I think my life these days is a country and western song, or at least the lyrics to a good part of one. My arms are getting thinner, my legs are getting thinner, but my belly is getting fatter. All I need is a dog, a divorce and a pick-up truck.
Wait! I have all of those too. My ex-wife got the dog in the divorce, but at least I got to keep my pick-up truck! So here it goes. let me know what you think. If you have another verse to add, please do. Just don't forget the chorus.
My arms are gettin' skinny, my legs is that way too.
But my belly's gettin' fatter every day.
At least I kept my pick-up truck, when gettin' my divorce,
But my ex-wife took my good ole dog away.
If it weren't fer that I'm dyin', I tell you I'd be lyin',
If I didn't say my life is such a bore.
The secret that I'm keepin', is only when I'm sleepin',
My biggest fun I get in bed's a snore.
My arms are gettin' skinny, my legs is that way too.
But my belly's gettin' fatter every day.
At least I kept my pick-up truck ,when gettin' my divorce,
But my ex-wife took my good ole dog away.
My legs is done from walkin', but my mouth is still a-talkin',
At least that's one thing went my way.
The trouble is my mind, it just ain't to inclined,
To think about the words I'm gonna say.
My arms are gettin' skinny, my legs is that way too.
But my belly's gettin' fatter every day.
At least I kept my pick-up truck ,when gettin' my divorce,
But my ex-wife took my good ole dog away.
One day I'll soon be dead, my story fully read.
My book of life a-sittin' on some shelf.
But when I git to heaven, I'll stand six foot eleven,
And I'll dance around just like a Christmas elf.
Oh.........
My arms are gettin' skinny, my legs is that way too.
But my belly's gettin' fatter every day.
At least I kept my pick-up truck ,when gettin' my divorce,
But my ex-wife took my good ole dog away.
I can already here the dueling banjos and see the toothless tub thumper. Please God, forgive me.
Thursday, 31 December 2015
Wednesday, 30 December 2015
Losses
My shoulder muscles hurt today, both the left and right. They hurt from the work of adjusting my body in bed, picking up my legs in the shower, transferring, all of it. As usual. my left side is the worst, almost bad enough to cause me to reach for the Tylenol. I probably will fairly soon; it makes no sense to stay in pain in some silly belief that I am saving my body by not taking all kinds of drugs. My body is getting well on to useless. Preserving and protecting it makes little or no sense at all. In fact, I'm going to stop for a minute and go get some Tylenol right now.
Pain management is a big deal with this disease, something you don't find out about until you are well into it. I have a variety of pain medications, at all levels of toxicity, which I can use depending on the intensity of pain, type of pain, and duration of pain. Most of the time, it's just Tylenol. If things amp up, I've got some Tylenol 3 with Codeine. For targeted intramuscular pain relief, I've got Naproxin. When things get really serious, I've got some Oxycontin on standby.
Perhaps the best pain relief I've ever felt has been hospital administered intravenous morphine. That stuff gives you a really good ride. It's a shame that some people are allergic to it; it really works. I can also see how some people get addicted to it. Morphine does a lot more than take away pain; it takes away how you feel and puts you someplace else altogether.
The only kind of pain I don't have pills for is the emotional pain that goes with the constant loss associated with ALS. I have been in virtually continuous mourning since I was diagnosed, diminished by each day with this disease. It's hard to explain. Imagine have dozens of pets, each of whom was important, integral to your life. Now imagine that each week one of those creatures you love, one of those parts of you, dies. You just get over one when another leaves you, leaves you lessened, leaves you in pain, leaves you in mourning. That might be an inkling of what it feels like for me, as each day or week I notice another loss, another pain.
My doctors, and most who care for me, suggest I drink to much. Alcohol is a pain killer. It's not as good as morphine, but it takes me away from my pain, takes me someplace else. I am self-medicating. It's not the best approach, but it is an approach. I am coping as best I can, with the losses, with the physical pain, and with the emotional pain. I hurt way too much, way too often, in places the pills can't reach. In the end, there is no pain relief. I always sober up. The pills always wear off. There is always a new pain, a new loss. That's the way this disease works.
Pain management is a big deal with this disease, something you don't find out about until you are well into it. I have a variety of pain medications, at all levels of toxicity, which I can use depending on the intensity of pain, type of pain, and duration of pain. Most of the time, it's just Tylenol. If things amp up, I've got some Tylenol 3 with Codeine. For targeted intramuscular pain relief, I've got Naproxin. When things get really serious, I've got some Oxycontin on standby.
Perhaps the best pain relief I've ever felt has been hospital administered intravenous morphine. That stuff gives you a really good ride. It's a shame that some people are allergic to it; it really works. I can also see how some people get addicted to it. Morphine does a lot more than take away pain; it takes away how you feel and puts you someplace else altogether.
The only kind of pain I don't have pills for is the emotional pain that goes with the constant loss associated with ALS. I have been in virtually continuous mourning since I was diagnosed, diminished by each day with this disease. It's hard to explain. Imagine have dozens of pets, each of whom was important, integral to your life. Now imagine that each week one of those creatures you love, one of those parts of you, dies. You just get over one when another leaves you, leaves you lessened, leaves you in pain, leaves you in mourning. That might be an inkling of what it feels like for me, as each day or week I notice another loss, another pain.
My doctors, and most who care for me, suggest I drink to much. Alcohol is a pain killer. It's not as good as morphine, but it takes me away from my pain, takes me someplace else. I am self-medicating. It's not the best approach, but it is an approach. I am coping as best I can, with the losses, with the physical pain, and with the emotional pain. I hurt way too much, way too often, in places the pills can't reach. In the end, there is no pain relief. I always sober up. The pills always wear off. There is always a new pain, a new loss. That's the way this disease works.
Tuesday, 29 December 2015
Another Pooping Tale
When I was a young man, just starting out in my career, I worked with another young fellow, a fellow who seemed completely enamoured with his bodily functions. He could describe, in some detail and with some alarmingly accurate descriptiveness, the process of evacuating his bowels, the state of the results therefrom, and the feelings of his colon thereafter. He freaked me out. While his story is one of the odd events in my life, I share it now only as a warning. The next few paragraphs will be about going poo.
I try very hard to be regular; I want to use the toilet when I get out of bed. This is simply an exercise in reducing the effort it takes for me to live my day. When I get up, I am in my underwear, underwear which need to be changed. When I go to the toilet, I remove said undergarments, and, using them as a cover for my wheelchair, go back onto my bed once I am finished with whatever needs to be done in the bathroom. Then I dress in clean clothes suitable for the day. Sometimes I even put on pants.
Were I not to do this, I would be compelled to get dressed at least twice in a day, an activity which, at its simplest, can be exhausting for me. I have not yet devolved to wearing a kilt and going commando. I'm not there yet. I know some who are. I am not one of them. Getting dressed, however, takes a bit of work for me. If you've ever seen even a part of this process, you know the wiggle for underwear, the combativeness of compression socks, the pluck required to put on pants. The only thing easy about getting dressed is sliding on a shirt. The whole process just wears me out.
Unfortunately this morning, the whole process was blocked, so to speak. I went to the toilet where I discovered that my body and gravity simply were not enough to complete the process. A very dry stool decided to take up residence just above the local sphincter, refusing all efforts to evict it. I spent a half an hour, working as best I could, waiting for the downward push of weakened muscles to combine with the downward pull of the earth. I failed. I did several other things which I simply am not willing to describe, all to convince my anal sphincter to let its contents go. I failed again, and again.
Ultimately I surrendered. I went to get off the toilet. At that point the little bastard decided to trick me, moving ever so slightly, peeking its head out like a borrowing owl from a prairie hole. I went back and the bastard retreated inward. I gave up once again, knowing full well that there was just enough of that little shit poking out to stain anything I sat on. I cleaned, and cleaned, and cleaned again. Then, taking my life in my hands, I transferred to my wheelchair and went to get dressed.
Now that I am up, I am certain I will have to use the toilet once again. This will mean getting on the toilet, wiggling my jeans down, wiggling my underwear off, and positioning myself. All the while that cruel resident of my lower colon will be waiting for me, waiting for that moment when I am least prepared, waiting to explode outward, making as much mess as possible. And that will require a complete change of clothing afterwards.
Some days my life is shitty. Some days it really sucks to be me. Some days I wish I could just take a simple stop, drop and go. Alas, not today.
I try very hard to be regular; I want to use the toilet when I get out of bed. This is simply an exercise in reducing the effort it takes for me to live my day. When I get up, I am in my underwear, underwear which need to be changed. When I go to the toilet, I remove said undergarments, and, using them as a cover for my wheelchair, go back onto my bed once I am finished with whatever needs to be done in the bathroom. Then I dress in clean clothes suitable for the day. Sometimes I even put on pants.
Were I not to do this, I would be compelled to get dressed at least twice in a day, an activity which, at its simplest, can be exhausting for me. I have not yet devolved to wearing a kilt and going commando. I'm not there yet. I know some who are. I am not one of them. Getting dressed, however, takes a bit of work for me. If you've ever seen even a part of this process, you know the wiggle for underwear, the combativeness of compression socks, the pluck required to put on pants. The only thing easy about getting dressed is sliding on a shirt. The whole process just wears me out.
Unfortunately this morning, the whole process was blocked, so to speak. I went to the toilet where I discovered that my body and gravity simply were not enough to complete the process. A very dry stool decided to take up residence just above the local sphincter, refusing all efforts to evict it. I spent a half an hour, working as best I could, waiting for the downward push of weakened muscles to combine with the downward pull of the earth. I failed. I did several other things which I simply am not willing to describe, all to convince my anal sphincter to let its contents go. I failed again, and again.
Ultimately I surrendered. I went to get off the toilet. At that point the little bastard decided to trick me, moving ever so slightly, peeking its head out like a borrowing owl from a prairie hole. I went back and the bastard retreated inward. I gave up once again, knowing full well that there was just enough of that little shit poking out to stain anything I sat on. I cleaned, and cleaned, and cleaned again. Then, taking my life in my hands, I transferred to my wheelchair and went to get dressed.
Now that I am up, I am certain I will have to use the toilet once again. This will mean getting on the toilet, wiggling my jeans down, wiggling my underwear off, and positioning myself. All the while that cruel resident of my lower colon will be waiting for me, waiting for that moment when I am least prepared, waiting to explode outward, making as much mess as possible. And that will require a complete change of clothing afterwards.
Some days my life is shitty. Some days it really sucks to be me. Some days I wish I could just take a simple stop, drop and go. Alas, not today.
Monday, 28 December 2015
Blog Spam
I get a lot of SPAM comments in my blog, virtually all of them attempting to sell me some sort of miracle, magical cure for ALS. You don't need to read much of them to quickly realize they are written by someone who's English is beyond just bad, someone who has stolen an email for AIDS or some other tragic illness and simply reworded it for ALS. Some of them are for specific products, like mattresses or shoes or compression socks. Some of them just start out strange, and get worse from there. I thought it might be fun to share some of them. Here is on that came in the other day, one of the strange love potion type spam posts
"After being in relationship with Wilson for seven years,he broke up with me, I did everything possible to bring him back but all was in vain, I wanted him back so much because of the love I have for him, I begged him with everything, I made promises but he refused. I explained my problem to someone online and she suggested that I should contact a spell caster that could help me cast a spell to bring him back but I am the type that don't believed in spell, I had no choice than to try it, I meant a spell caster called Dr Zuma zuk and I email him, and he told me there was no problem that everything will be okay before three days, that my ex will return to me before three days, he cast the spell and surprisingly in the second day, it was around 4pm. My ex called me, I was so surprised, I answered the call and all he said was that he was so sorry for everything that happened, that he wanted me to return to him, that he loves me so much. I was so happy and went to him, that was how we"
I get a lot of these spell caster type SPAM comments. Most of them have the decency to at least attempt to reference ALS in their content. This guy didn't even try. I am sure the good Dr. Zuma zuk is a powerful spell caster. I'm just not so sure I want Wilson to come back to me. After all, Wilson was a volley ball, right?
Then I get the ones which are, at best, poorly edited cut and past jobs from AIDS emails, like this one.
"I am Happy to Thank the dr. Momodu for his good work I really believe ALS have cure I was ALS positive over since 1year plus before I come across a comment dr.Momodu that he have cure to any disease and virus but when I saw it i have it in mind that he can’t cure ALS I just decided to give a try I contact him that night lucky to me he said yes but I don’t believe him I think it was a scam or some thing like that but I still hold on to see the work of dr.Momodu if he is saying the true he ask for different things and some question about me I give him all the detail he needed and I wait to see his reply to my problem after all the things is done he ask me to go for check up I went for HIV test I cant believe I was negative the medicine doctor was surprise and doctor even ask for dr Momodu email which i give to him, he is help people that contact him also he can still help you on your cure thanks dr.Momodu for helping me for the cure at this young age if you need help contact him now"
Note that the proponent for Dr. Momodu completely failed to remove the reference to HIV tests. I wonder if someone has told this poor fellow that HIV testing has nothing to do with ALS. I love the part where the writer references the "medicine doctor". I'm thinking this is as opposed to the witch doctor, which I suspect Dr. Momodu is one of, as are his compatriots in other SPAM posts, Dr. Akhere, Dr. Iguega, and Dr. Agbegbu. I am sure there are many more of them too.
The next sample is very cool, as long as you are a Dan Brown fan; that's Dan Brown, the author of the novels The Lost Symbol, The Da Vinci Code, Angels & Demons, Deception Point, and Inferno. Here you go, and promise me you won't laugh until you've finished it.
"WELCOME TO THE GREAT BROTHERHOOD ILLUMINATI KINGDOM, WHERE YOU FOUND ALL KINDS OF HAPPINESS BLESSING JOY IN LIFE.Are you a business man, politician, artist,worker, student and you want to become rich,wealthy and famous to make your wishes come true in life. You can achieve your dreams, Powerful and famous in the whole world, Join the great brotherhood Illuminati online today and get the sum of 500,000 dollar with a free home any where you choose to live in the world and also get 200,000 dollar monthly as salary. But all these will be given to you after seeing your interest, seriousness and willingness. Email: 666wealthandriches@gmail.com If you are interested, kindly fill the following information given below" Full name: Country: State of origin: Occupation: Date of birth: Sex: Address: Tel no: Email address: Note that you are to attach a passport of your image, tell us little about yourself and your purpose of wanting to become a member of the GREAT BROTHERHOOD ILLUMINATI..."
There is just nothing I can say about this, except perhaps to question why they need a "passport of my image". What the hell is that? Oh, and all the other personal stuff too. For God's sake, they are the "GREAT BROTHERHOOD ILLUMINATI KINGDOM". Aren't they supposed to know this stuff already?
My favourite has to be the following SPAM post. I class it under the "What The Hell" category. I get these on a regular basis. I'll let you figure out why I go "what the hell" when I get one.
"Nice Blog and article. Thanks for sharing.. Baca Artikel Menarik Kami Obat Pembesar Penis – Produk vimax adalah salah satu obat pembesar alat vital yang sangat manjur untuk menambah panjang ukuran penis dan memperbesar ukuran penis. Para pria harus menggunakan obat memperbesar penis ini untuk meningkatkan gairah seks. Vimax asli merupakan salah satu produk yang sang terkenal hingga kini masih banyak orang yang menggunakan pembesar penis ini untuk meningkatkan kejantanan pria. Manfaat vimax izon selain berfungsi untuk meningkatkan gairah seksual dan juga untuk memperpanjang ukuran penis, vimax canada ini juga akan menambah daya tahan tubuh serta memperpanjang durasi hubungan intim. Obat pembesar penis vimax pills ini juga di rekomendasi oleh ahli kesehatan untuk menambah gairah hubungan pasutri. Karena web ini merupakan web sebagai Review saja jadi utk pemesanan vimax asli canada. buka aja di website: http://3tmrilondon.org/ Mau Artikel Lebih Menarik Lagi Baca : Cara membesarkan penis "
The only part I can figure out is the Vimax penis pills. I'm pretty sure this comment has nothing to do with ALS, or my blog. I'm guessing the English part at the beginning is pro forma, just a sincere and pleasant introduction prior to the sales job that follows.
It's all in a day's work, filtering out and removing this kind of nonsense from my blog comments. I've done the best I can to keep them from proliferating. I do the best I can to stop from spreading this disease, not ALS, the disease of SPAM. And I get a good laugh now and again, just reviewing the stupidity, idiocy, and ignorance of them all. On the other hand, I have to ask myself if these posts ever work. After all, P.T. Barnum was only half-right. There is a sucker born, not every minute, but seemingly every second.
"After being in relationship with Wilson for seven years,he broke up with me, I did everything possible to bring him back but all was in vain, I wanted him back so much because of the love I have for him, I begged him with everything, I made promises but he refused. I explained my problem to someone online and she suggested that I should contact a spell caster that could help me cast a spell to bring him back but I am the type that don't believed in spell, I had no choice than to try it, I meant a spell caster called Dr Zuma zuk and I email him, and he told me there was no problem that everything will be okay before three days, that my ex will return to me before three days, he cast the spell and surprisingly in the second day, it was around 4pm. My ex called me, I was so surprised, I answered the call and all he said was that he was so sorry for everything that happened, that he wanted me to return to him, that he loves me so much. I was so happy and went to him, that was how we"
I get a lot of these spell caster type SPAM comments. Most of them have the decency to at least attempt to reference ALS in their content. This guy didn't even try. I am sure the good Dr. Zuma zuk is a powerful spell caster. I'm just not so sure I want Wilson to come back to me. After all, Wilson was a volley ball, right?
Then I get the ones which are, at best, poorly edited cut and past jobs from AIDS emails, like this one.
"I am Happy to Thank the dr. Momodu for his good work I really believe ALS have cure I was ALS positive over since 1year plus before I come across a comment dr.Momodu that he have cure to any disease and virus but when I saw it i have it in mind that he can’t cure ALS I just decided to give a try I contact him that night lucky to me he said yes but I don’t believe him I think it was a scam or some thing like that but I still hold on to see the work of dr.Momodu if he is saying the true he ask for different things and some question about me I give him all the detail he needed and I wait to see his reply to my problem after all the things is done he ask me to go for check up I went for HIV test I cant believe I was negative the medicine doctor was surprise and doctor even ask for dr Momodu email which i give to him, he is help people that contact him also he can still help you on your cure thanks dr.Momodu for helping me for the cure at this young age if you need help contact him now"
Note that the proponent for Dr. Momodu completely failed to remove the reference to HIV tests. I wonder if someone has told this poor fellow that HIV testing has nothing to do with ALS. I love the part where the writer references the "medicine doctor". I'm thinking this is as opposed to the witch doctor, which I suspect Dr. Momodu is one of, as are his compatriots in other SPAM posts, Dr. Akhere, Dr. Iguega, and Dr. Agbegbu. I am sure there are many more of them too.
The next sample is very cool, as long as you are a Dan Brown fan; that's Dan Brown, the author of the novels The Lost Symbol, The Da Vinci Code, Angels & Demons, Deception Point, and Inferno. Here you go, and promise me you won't laugh until you've finished it.
"WELCOME TO THE GREAT BROTHERHOOD ILLUMINATI KINGDOM, WHERE YOU FOUND ALL KINDS OF HAPPINESS BLESSING JOY IN LIFE.Are you a business man, politician, artist,worker, student and you want to become rich,wealthy and famous to make your wishes come true in life. You can achieve your dreams, Powerful and famous in the whole world, Join the great brotherhood Illuminati online today and get the sum of 500,000 dollar with a free home any where you choose to live in the world and also get 200,000 dollar monthly as salary. But all these will be given to you after seeing your interest, seriousness and willingness. Email: 666wealthandriches@gmail.com If you are interested, kindly fill the following information given below" Full name: Country: State of origin: Occupation: Date of birth: Sex: Address: Tel no: Email address: Note that you are to attach a passport of your image, tell us little about yourself and your purpose of wanting to become a member of the GREAT BROTHERHOOD ILLUMINATI..."
There is just nothing I can say about this, except perhaps to question why they need a "passport of my image". What the hell is that? Oh, and all the other personal stuff too. For God's sake, they are the "GREAT BROTHERHOOD ILLUMINATI KINGDOM". Aren't they supposed to know this stuff already?
My favourite has to be the following SPAM post. I class it under the "What The Hell" category. I get these on a regular basis. I'll let you figure out why I go "what the hell" when I get one.
"Nice Blog and article. Thanks for sharing.. Baca Artikel Menarik Kami Obat Pembesar Penis – Produk vimax adalah salah satu obat pembesar alat vital yang sangat manjur untuk menambah panjang ukuran penis dan memperbesar ukuran penis. Para pria harus menggunakan obat memperbesar penis ini untuk meningkatkan gairah seks. Vimax asli merupakan salah satu produk yang sang terkenal hingga kini masih banyak orang yang menggunakan pembesar penis ini untuk meningkatkan kejantanan pria. Manfaat vimax izon selain berfungsi untuk meningkatkan gairah seksual dan juga untuk memperpanjang ukuran penis, vimax canada ini juga akan menambah daya tahan tubuh serta memperpanjang durasi hubungan intim. Obat pembesar penis vimax pills ini juga di rekomendasi oleh ahli kesehatan untuk menambah gairah hubungan pasutri. Karena web ini merupakan web sebagai Review saja jadi utk pemesanan vimax asli canada. buka aja di website: http://3tmrilondon.org/ Mau Artikel Lebih Menarik Lagi Baca : Cara membesarkan penis "
The only part I can figure out is the Vimax penis pills. I'm pretty sure this comment has nothing to do with ALS, or my blog. I'm guessing the English part at the beginning is pro forma, just a sincere and pleasant introduction prior to the sales job that follows.
It's all in a day's work, filtering out and removing this kind of nonsense from my blog comments. I've done the best I can to keep them from proliferating. I do the best I can to stop from spreading this disease, not ALS, the disease of SPAM. And I get a good laugh now and again, just reviewing the stupidity, idiocy, and ignorance of them all. On the other hand, I have to ask myself if these posts ever work. After all, P.T. Barnum was only half-right. There is a sucker born, not every minute, but seemingly every second.
Sunday, 27 December 2015
Why Am I Here?
Why am I here? It's the kind of question any reasonably intelligent, reasonably introspective, sentient being asks. What is my purpose? How did I come to be here? If you think, you pretty quickly come to realize that there are no good answers for these questions. That's why we invented religion, the faith in things unknown, things unseen. We desperately needed a reason to be here, so we invented one. As to purpose, I truly believe that we create our own purpose once we arrive in this life, simply so we can have an answer to these troubling questions.
For me, the questions are slightly different. It is a constant question in my mind. Why am I still here? Why am I not dead already? Why is my progression like this? It's an ironic twist of words, when progression really means regression. Why am I progressing to death at this pace? Why do others go faster, or slower? With ALS, even the mighty powers of science are stumped by these questions.
The whole purpose thing for me is highly problematic as well. I am simply here consuming resources, resources which could be much more helpful for others, resources which could make a real difference in the life of someone less well off. I am compelled to consider what I return to my society in return for these resources. What can I give back? Why is it worth investing in this clearly lost cause, when there are so many others who need so much? I have no purpose that I can see.
In an older world, a crueler world, a more facist world, I would no longer be here. I would have died either through lack of care, or direct intervention by the world around me. I might have been part of the Hitlerian solution to rid society of those who are simply a burden. I might have been in a social construct where I simply crawled off into the wilderness, or slid aboard an ice floe drifting out to sea, there to die without ceremony, without infringement on a fragile society.
I don't know why I am still here. Nobody knows. I don't know why other pALS who have gotten sick after me have died already. Nobody knows. I don't know what is keeping me here, what pulls out a longer thread of life from the weave of humanity. I think about it, a lot. I just don't know. I don't have any good answers. I'm just waiting to see how it all turns out. That's enough purpose for now.
For me, the questions are slightly different. It is a constant question in my mind. Why am I still here? Why am I not dead already? Why is my progression like this? It's an ironic twist of words, when progression really means regression. Why am I progressing to death at this pace? Why do others go faster, or slower? With ALS, even the mighty powers of science are stumped by these questions.
The whole purpose thing for me is highly problematic as well. I am simply here consuming resources, resources which could be much more helpful for others, resources which could make a real difference in the life of someone less well off. I am compelled to consider what I return to my society in return for these resources. What can I give back? Why is it worth investing in this clearly lost cause, when there are so many others who need so much? I have no purpose that I can see.
In an older world, a crueler world, a more facist world, I would no longer be here. I would have died either through lack of care, or direct intervention by the world around me. I might have been part of the Hitlerian solution to rid society of those who are simply a burden. I might have been in a social construct where I simply crawled off into the wilderness, or slid aboard an ice floe drifting out to sea, there to die without ceremony, without infringement on a fragile society.
I don't know why I am still here. Nobody knows. I don't know why other pALS who have gotten sick after me have died already. Nobody knows. I don't know what is keeping me here, what pulls out a longer thread of life from the weave of humanity. I think about it, a lot. I just don't know. I don't have any good answers. I'm just waiting to see how it all turns out. That's enough purpose for now.
Saturday, 26 December 2015
A Stairway To Kindness
Kindness is the most amazing thing. Katherine does a thousand little acts of kindness for me every day, things which are simple and easy, all focused on how I feel or how I am doing. With those acts of kindness she makes me feel loved and appreciated. It's not just acts of kindness, it's also words of kindness, even looking at me kindly. I can sense it all. Katherine says she is kind to everyone, and that is true; her kindness to me feels special, different. I know for a fact that she does kind things for me, to me, which she will never do for anyone else.
There hasn't been a lot of kindness in my life. My father was a poor role model in this sense; he had a hard time with kindness. Perhaps he just didn't know what it was. Even the humour in his home was essentially unkind, that humour where others were the target and your job was to get your shot in. My ex-wife was good to me, at times, but rarely kind to me. There is a difference. Being good to someone need not be an expression of love; being kind to someone requires that there is love in your heart.
One story from my marriage tells this tale so much better than anything else. Back in 2011, ALS had started within me, although nobody knew it. All we knew is that I had been tripping lately, that I was weak in my left leg, that I felt "wobbly". I sat down heavily, so much so that my ex-wife criticized it, say that I was going to break the couch if I kept sitting down that way. She didn't know I had ALS; she did know that I was worried about tripping, and felt weak in my legs. She knew it because she had seen it, and because I had told her. She dismissed it as me being overweight and lazy.
I was downstairs in our basement one day, getting something from some box or other. By this time I had lost my office downstairs completely. My ex-wife had decided that our 21 year old son needed that space more than I did. As I came back up the stairs, I was forced to step over and around several stacks of children's books which she was storing on the steps. She had collected well over 10,000 children's books by this time, taking up more than a third of our home for storage. She was constantly sorting them, taking pictures of them, posting them online for sale. She called it her retirement plan.
After weaving my way through the stacks to the top of the stairs, I asked her if she would mind keeping the books off the steps, as I was afraid I might trip over them. Her response was "No. You can walk around them just fine." This unkindness was not at all uncommon; in fact it was the norm rather than the exception. I can still feel the pain and humiliation of it all.
I see the opposite these days. When Katherine walks by the bed, she stops to make sure my feet are covered, that I am tucked in, that I have water beside me. She knows I can get out of bed; some days she pushes me just to get me there. On the other hand, she also knows that I often forget my cup of water, that I consistently am unable to pull the bedclothes over my feet, that my arms are no longer strong enough to pull the blankets with ease. She does these things, not because she has to, but because she loves me, because she is kind to me.
There are so many other things she does out of kindness for me, things she says out of kindness. She reminds me that I am still alive, still a man, still capable. She speaks to me with respect and honour, even when I don't deserve it. She forgives my failings, never reminding me of how flawed I am, never bringing up past errors to keep me in my place.
Katherine is good to me, no doubt. She is also kind to me, something I need in full measure these days. I have learned more about kindness from her in the last year than I have ever known before. I am learning to be kinder myself. She is helping me be a better man. That's real love.
There hasn't been a lot of kindness in my life. My father was a poor role model in this sense; he had a hard time with kindness. Perhaps he just didn't know what it was. Even the humour in his home was essentially unkind, that humour where others were the target and your job was to get your shot in. My ex-wife was good to me, at times, but rarely kind to me. There is a difference. Being good to someone need not be an expression of love; being kind to someone requires that there is love in your heart.
One story from my marriage tells this tale so much better than anything else. Back in 2011, ALS had started within me, although nobody knew it. All we knew is that I had been tripping lately, that I was weak in my left leg, that I felt "wobbly". I sat down heavily, so much so that my ex-wife criticized it, say that I was going to break the couch if I kept sitting down that way. She didn't know I had ALS; she did know that I was worried about tripping, and felt weak in my legs. She knew it because she had seen it, and because I had told her. She dismissed it as me being overweight and lazy.
I was downstairs in our basement one day, getting something from some box or other. By this time I had lost my office downstairs completely. My ex-wife had decided that our 21 year old son needed that space more than I did. As I came back up the stairs, I was forced to step over and around several stacks of children's books which she was storing on the steps. She had collected well over 10,000 children's books by this time, taking up more than a third of our home for storage. She was constantly sorting them, taking pictures of them, posting them online for sale. She called it her retirement plan.
After weaving my way through the stacks to the top of the stairs, I asked her if she would mind keeping the books off the steps, as I was afraid I might trip over them. Her response was "No. You can walk around them just fine." This unkindness was not at all uncommon; in fact it was the norm rather than the exception. I can still feel the pain and humiliation of it all.
I see the opposite these days. When Katherine walks by the bed, she stops to make sure my feet are covered, that I am tucked in, that I have water beside me. She knows I can get out of bed; some days she pushes me just to get me there. On the other hand, she also knows that I often forget my cup of water, that I consistently am unable to pull the bedclothes over my feet, that my arms are no longer strong enough to pull the blankets with ease. She does these things, not because she has to, but because she loves me, because she is kind to me.
There are so many other things she does out of kindness for me, things she says out of kindness. She reminds me that I am still alive, still a man, still capable. She speaks to me with respect and honour, even when I don't deserve it. She forgives my failings, never reminding me of how flawed I am, never bringing up past errors to keep me in my place.
Katherine is good to me, no doubt. She is also kind to me, something I need in full measure these days. I have learned more about kindness from her in the last year than I have ever known before. I am learning to be kinder myself. She is helping me be a better man. That's real love.
Friday, 25 December 2015
My Christmas Miracle
Christmas; the day when Christians worldwide celebrate the birth of Christ. This tradition is so ingrained in western culture, and spread by missionaries across the globe, that a great many who celebrate this day do it in the spirit of tradition rather than faith and belief. It matters little. It is a day when we celebrate joy, peace, loving and giving. The only tragedy is that we take but this one day to focus on these virtues, things we could focus on a great deal more.
Christmas is the season of miracles, so the Christian community says. That may be, although I did not get my Christmas wish, my Christmas miracle, a cure for ALS. Then again, some would contend that my personal miracle is being here. A great many pALS have left us this year, the miracle of a cure coming to late for them, as it likely will for me. It's the strangeness of this illness, that for some it comes quickly while for others it takes many years to do its work. So my miracle, should I choose to claim is, is the miracle of life, of still being here.
There is the miracle of science and technology, the many miracles of science and technology, borne out of the diligence and work of doctors, researchers, chemists, metallurgists, engineers and so many others. These men and women, in the course of their labours both paid and unpaid, mean I get things like medications to keep my heart and lungs healthy, free from blood clots or arterial plaque or the dreaded heart attack. They bring me the miracles of a modern wheelchair, a shower that works for someone as handicapped as I, hand controls for my truck, lift systems to move my dead bulk around.
I gain greatly from the miracles of a modern health care state. Those who live impoverished lives in third world nations would certainly think it so, that someone I don't know, someone who I don't pay, comes in to help me, to care for me, at least three times a week, and more as I need it. This certainly does not replace the care and love of family; instead it gives them an opportunity to be with me without having to worry about me. There is a miracle in this national generosity
Others might contend that Katherine is my miracle; they might be right. She has come into my life when I most needed her, putting aside her own life to make mine better. In her there is the miracle of love. As the line goes in "Miracle of Miracles", the tailor's song from the musical Fiddler On The Roof, "But of all God's miracles large and small,, The most miraculous one of all, Is the one I thought could never be: God has given you to me."
Love in my life, caring and giving; this is my miracle. Everything else is just circumstance.
Christmas is the season of miracles, so the Christian community says. That may be, although I did not get my Christmas wish, my Christmas miracle, a cure for ALS. Then again, some would contend that my personal miracle is being here. A great many pALS have left us this year, the miracle of a cure coming to late for them, as it likely will for me. It's the strangeness of this illness, that for some it comes quickly while for others it takes many years to do its work. So my miracle, should I choose to claim is, is the miracle of life, of still being here.
There is the miracle of science and technology, the many miracles of science and technology, borne out of the diligence and work of doctors, researchers, chemists, metallurgists, engineers and so many others. These men and women, in the course of their labours both paid and unpaid, mean I get things like medications to keep my heart and lungs healthy, free from blood clots or arterial plaque or the dreaded heart attack. They bring me the miracles of a modern wheelchair, a shower that works for someone as handicapped as I, hand controls for my truck, lift systems to move my dead bulk around.
I gain greatly from the miracles of a modern health care state. Those who live impoverished lives in third world nations would certainly think it so, that someone I don't know, someone who I don't pay, comes in to help me, to care for me, at least three times a week, and more as I need it. This certainly does not replace the care and love of family; instead it gives them an opportunity to be with me without having to worry about me. There is a miracle in this national generosity
Others might contend that Katherine is my miracle; they might be right. She has come into my life when I most needed her, putting aside her own life to make mine better. In her there is the miracle of love. As the line goes in "Miracle of Miracles", the tailor's song from the musical Fiddler On The Roof, "But of all God's miracles large and small,, The most miraculous one of all, Is the one I thought could never be: God has given you to me."
Love in my life, caring and giving; this is my miracle. Everything else is just circumstance.
Thursday, 24 December 2015
Snow On Christmas Eve
I'm sitting here with my cappuccino, watching the evening gloom settle in across the snow scattered horizon. It's cold here today, snowing off and on since late last night. I response, I had the perfect kind of morning, one which lasted until 3:00 PM this afternoon. I rested in bed, doing little, enjoying the view from my bedroom window.
I awoke this morning at about 11:00 AM, casting my glance to the snowfall outside. The trees are crusted with wintery icing, the sounds from the road below muffled by the new fallen snow. Katherine encouraged me to get up, to which I replied "eventually". She said she had made my coffee, by which she meant breakfast. She makes me breakfast in bed regularly, then sits with me as I eat, using a tray to hold both of our meals and coffee. This one was special; in addition to my usual feast of sliced cheese and meat, along with a segmented half-orange and some raisins, she had made a fried egg, and fried the meat slices too. It was delicious. We ate, we talked. Mostly I talked, mostly about how I missed my children, especially at Christmas.
After breakfast Katherine once again asked if I was going to get up. I said I wanted to lay in bed for a while, perhaps for a long while. She approved, wandering off to do whatever it is she does around my small apartment when I am in bed and she is up and about. I didn't lay down. Instead I adjusted my pillows so I could sit up, play with my phone, look out the window at the falling snow, while still napping here and there a bit.
After a couple of hours Katherine came back, snuggling into bed beside me. We talked some more about life, the changes of the last year, travel, the future. We hugged and held each other as we pondered once more the snow outside the window. At some point things got active, followed once again by more time cuddling, hugging, talking about stuff, our stuff.
Then, just before 3:00 PM, the spell was broken, both by time and by an observation from Katherine. She noted that my breathing was faster than hers, more shallow. She has been noticing this for a while, and commented that earlier this year she and I breathed at the same rate, but now I breathe faster than she does. I explained that part of this was due to physical activity, and part of it was due to my failing core muscles. I've been working harder these days to get a good breath, to get the air I need. With shallower breathing, I must breath more often.
The morning was gone. I had been replaced suddenly by late afternoon, the skies becoming darker in these short winter days, the snow blocking out the distant view. So I got up, made us a cappuccino, and here I am, ready to start my day. Even at 4:00 PM. Tonight we are dropping Kate off at the airport; she is going to visit her Mom for Christmas. Katherine and I will go looking at Christmas lights. In the evening, we will unwrap a present, at her insistence. My short day will end at around midnight, when I will crawl into bed, the glow from the streetlamps outside illuminating the ever present snow, both falling and on the ground.
I awoke this morning at about 11:00 AM, casting my glance to the snowfall outside. The trees are crusted with wintery icing, the sounds from the road below muffled by the new fallen snow. Katherine encouraged me to get up, to which I replied "eventually". She said she had made my coffee, by which she meant breakfast. She makes me breakfast in bed regularly, then sits with me as I eat, using a tray to hold both of our meals and coffee. This one was special; in addition to my usual feast of sliced cheese and meat, along with a segmented half-orange and some raisins, she had made a fried egg, and fried the meat slices too. It was delicious. We ate, we talked. Mostly I talked, mostly about how I missed my children, especially at Christmas.
After breakfast Katherine once again asked if I was going to get up. I said I wanted to lay in bed for a while, perhaps for a long while. She approved, wandering off to do whatever it is she does around my small apartment when I am in bed and she is up and about. I didn't lay down. Instead I adjusted my pillows so I could sit up, play with my phone, look out the window at the falling snow, while still napping here and there a bit.
After a couple of hours Katherine came back, snuggling into bed beside me. We talked some more about life, the changes of the last year, travel, the future. We hugged and held each other as we pondered once more the snow outside the window. At some point things got active, followed once again by more time cuddling, hugging, talking about stuff, our stuff.
Then, just before 3:00 PM, the spell was broken, both by time and by an observation from Katherine. She noted that my breathing was faster than hers, more shallow. She has been noticing this for a while, and commented that earlier this year she and I breathed at the same rate, but now I breathe faster than she does. I explained that part of this was due to physical activity, and part of it was due to my failing core muscles. I've been working harder these days to get a good breath, to get the air I need. With shallower breathing, I must breath more often.
The morning was gone. I had been replaced suddenly by late afternoon, the skies becoming darker in these short winter days, the snow blocking out the distant view. So I got up, made us a cappuccino, and here I am, ready to start my day. Even at 4:00 PM. Tonight we are dropping Kate off at the airport; she is going to visit her Mom for Christmas. Katherine and I will go looking at Christmas lights. In the evening, we will unwrap a present, at her insistence. My short day will end at around midnight, when I will crawl into bed, the glow from the streetlamps outside illuminating the ever present snow, both falling and on the ground.
Wednesday, 23 December 2015
Another Strange Dream
I had one of those very strange dreams last night, the kind of dream where odd things happen, where the players in the dream are from your life, where activities take place which make no sense. My ex-wife was in the dream, along with one of my children, still very young. A man and wife I knew from Abbotsford, people I had never met, even John Wayne made an appearance. It was all very strange.
One thing was not all that strange. In the dream, I was in the wheelchair. It wasn't a full time commitment; I didn't need the wheelchair for a part of the dream, especially the part where John Wayne was leading an air bombing campaign of the nearby aboriginal community. Yet towards the end of the dream, after the bombing was compete, I felt panic in the dream, a panic to find my wheelchair. It's been long enough that even in my dreams I now need the chair; I am a master in the chair, strong and powerful, but I needed the chair.
Another odd thing in this dream was that I could not identify where I lived. I didn't live in Abbotsford. I didn't live in Vancouver, or Port Coquitlam; Calgary didn't even occur to me in the dream. I didn't live anywhere which I could remember. This feeling of not knowing where I lived was so strong that when I woke, I needed to remind myself of where I was, where I lived. I had to shake off this very real feeling that I had another apartment in some other city somewhere, and the rent was due.
Some of the parts of this dream make sense. I am still dealing with anger at my ex-wife; I am still very frustrated that she has such easy access to our grandchildren while I do not. On the other hand I must constantly remind myself that I am the one who moved to Calgary, that I am the one who chose to stay here once diagnosed. I was in the middle of the divorce at that time and it just seemed wiser to keep that distance between myself and my ex-wife, plus I had such a great support network here. ALS kept me here too.
Perhaps the whole question of where I truly live is part of that Calgary issue from the dream. My heart is constantly in both places, here with Katherine, my daughter Kate, and so many friends and caregivers, or there, in BC, with my other children, with my Mom, with my brothers who live there, with my life long friends. I love my life here in Calgary; it saddens me deeply that I cannot see my other children and my grandchildren more often.
Or perhaps, just perhaps, it's simply another one of those really strange, inexplicable dreams which we all have now and again. Maybe it was the beer last night; maybe it was the snacks before bed, maybe it was something in the water. Who knows?
One thing was not all that strange. In the dream, I was in the wheelchair. It wasn't a full time commitment; I didn't need the wheelchair for a part of the dream, especially the part where John Wayne was leading an air bombing campaign of the nearby aboriginal community. Yet towards the end of the dream, after the bombing was compete, I felt panic in the dream, a panic to find my wheelchair. It's been long enough that even in my dreams I now need the chair; I am a master in the chair, strong and powerful, but I needed the chair.
Another odd thing in this dream was that I could not identify where I lived. I didn't live in Abbotsford. I didn't live in Vancouver, or Port Coquitlam; Calgary didn't even occur to me in the dream. I didn't live anywhere which I could remember. This feeling of not knowing where I lived was so strong that when I woke, I needed to remind myself of where I was, where I lived. I had to shake off this very real feeling that I had another apartment in some other city somewhere, and the rent was due.
Some of the parts of this dream make sense. I am still dealing with anger at my ex-wife; I am still very frustrated that she has such easy access to our grandchildren while I do not. On the other hand I must constantly remind myself that I am the one who moved to Calgary, that I am the one who chose to stay here once diagnosed. I was in the middle of the divorce at that time and it just seemed wiser to keep that distance between myself and my ex-wife, plus I had such a great support network here. ALS kept me here too.
Perhaps the whole question of where I truly live is part of that Calgary issue from the dream. My heart is constantly in both places, here with Katherine, my daughter Kate, and so many friends and caregivers, or there, in BC, with my other children, with my Mom, with my brothers who live there, with my life long friends. I love my life here in Calgary; it saddens me deeply that I cannot see my other children and my grandchildren more often.
Or perhaps, just perhaps, it's simply another one of those really strange, inexplicable dreams which we all have now and again. Maybe it was the beer last night; maybe it was the snacks before bed, maybe it was something in the water. Who knows?
Tuesday, 22 December 2015
Anger Is Pointless
It would seem that, even though I am on the Alberta Assured Income for the Severely Handicapped program, my income is not really assured. Notwithstanding the application and approval based on my CPP payment, the AISH program is required to look at my CPP authorized amount. That amount is $1,180. My ex-wife filed for, and receives $138 off my cheque as a CPP equalization; she is legally entitled to this money. It's hers, notwithstanding that she works, lives in a $400,000 home with no mortgage, and rents out the basement to our daughter.
The AISH representative originally looked at how much I received, not my entitlement. That didn't work out, so my ex-wife still gets her $138 a month, and my AISH payment drops by that same amount. No matter what I do, I will be paying the price of a bad marriage for the rest of my life. Hell hath no fury...
I could get angry about this. I guess I am angry at some level. There is a definite unfairness in all this, that she would be earning more, living better, taking money from me, while I am compelled to beg from family and friends to make ends meet. I have to remind myself that she has her side of the story, and that she is legally entitled to a portion of my CPP no matter what I have to say about it. I should have negotiated better in the divorce. Clearly she had a better lawyer, or a least a meaner lawyer.
Anger is such a wasted emotion. The only person you hurt with anger is yourself. My ex-wife not only doesn't care, but probably doesn't even know about my anger. Certainly she has no concern for my well-being. I get that. I left her. We went through a divorce. She is simply making the most of what she can get. I might as well not even exist but for that $138 a month. To her, I am still all about the money I provide.
Ah, so there is some anger. I'm going to work hard to put that aside, to focus instead on all I have here in my life. I'm going to focus on Katherine, on Katie and my other children, on my friends, on my quality of living, on the amazing support systems which are in place here for me. Those are worth a lot more than a measly $138 a month.
The AISH representative originally looked at how much I received, not my entitlement. That didn't work out, so my ex-wife still gets her $138 a month, and my AISH payment drops by that same amount. No matter what I do, I will be paying the price of a bad marriage for the rest of my life. Hell hath no fury...
I could get angry about this. I guess I am angry at some level. There is a definite unfairness in all this, that she would be earning more, living better, taking money from me, while I am compelled to beg from family and friends to make ends meet. I have to remind myself that she has her side of the story, and that she is legally entitled to a portion of my CPP no matter what I have to say about it. I should have negotiated better in the divorce. Clearly she had a better lawyer, or a least a meaner lawyer.
Anger is such a wasted emotion. The only person you hurt with anger is yourself. My ex-wife not only doesn't care, but probably doesn't even know about my anger. Certainly she has no concern for my well-being. I get that. I left her. We went through a divorce. She is simply making the most of what she can get. I might as well not even exist but for that $138 a month. To her, I am still all about the money I provide.
Ah, so there is some anger. I'm going to work hard to put that aside, to focus instead on all I have here in my life. I'm going to focus on Katherine, on Katie and my other children, on my friends, on my quality of living, on the amazing support systems which are in place here for me. Those are worth a lot more than a measly $138 a month.
Monday, 21 December 2015
The Nature Of The Beast
The water has been turned off in my apartment building this morning. There was no warning, so I must conclude it is some sort of emergency. We've had this happen before, where plumbing breaks unexpectedly or someone foolishly leaves a window open during the cold weather. Common sense isn't very common; people do dumb things. It can't be helped.
My problem is that I haven't had a shower since Friday, and I had a very busy weekend. I smell, badly. I am in desperate need of a shower, but could not have one this morning even though my HCA was here and willing to help. I might be able to have one later today. I will ask Katherine to help me.
The other problem is that I couldn't use the toilet, or rather, if I did, I couldn't flush it. At least I think that's the case. It's kind of a Hobson's choice. If there is water in the tank, I cannot tell. I'm not up to lifting the lid off to look. If I flush it to see if there is water, then there will be no water to flush it again. If I use it and there is no water, then I have a smelly toilet until the water comes back on again. I'm just going to wait. I can do that.
Thank goodness, and thank Katherine, that there is water in the water jug, and in the Keurig. I know that the Keurig coffee making systems is not environmentally friendly. There are a lot of those plastic pods going into the landfill. The machines themselves cannot be recycled, and they are designed to last only a couple of years. Mine is starting to leak now and again.
The thing is that the Keurig system allows me to make a cup of coffee for myself. I doubt that I could do that consistently with my other methods, the French Press or the Espresso machine. I make espresso every once in a while, but it takes a tremendous effort. Grinding the coffee, working the steamer and the espresso, cleaning everything up afterwards; that's just too much effort for my morning coffee. The French Press is slightly easier, but it still involves grinding the coffee, using the kettle on the stove, and actually pressing the coffee. These are no longer easy tasks for me.
My life is filled with these kinds of choices, choices between what I would like to do and what I have to do to keep going. Convenience has become necessity. I am consistently compelled to choose the path of least effort, regardless of other outcomes. It is the nature of the beast.
My problem is that I haven't had a shower since Friday, and I had a very busy weekend. I smell, badly. I am in desperate need of a shower, but could not have one this morning even though my HCA was here and willing to help. I might be able to have one later today. I will ask Katherine to help me.
The other problem is that I couldn't use the toilet, or rather, if I did, I couldn't flush it. At least I think that's the case. It's kind of a Hobson's choice. If there is water in the tank, I cannot tell. I'm not up to lifting the lid off to look. If I flush it to see if there is water, then there will be no water to flush it again. If I use it and there is no water, then I have a smelly toilet until the water comes back on again. I'm just going to wait. I can do that.
Thank goodness, and thank Katherine, that there is water in the water jug, and in the Keurig. I know that the Keurig coffee making systems is not environmentally friendly. There are a lot of those plastic pods going into the landfill. The machines themselves cannot be recycled, and they are designed to last only a couple of years. Mine is starting to leak now and again.
The thing is that the Keurig system allows me to make a cup of coffee for myself. I doubt that I could do that consistently with my other methods, the French Press or the Espresso machine. I make espresso every once in a while, but it takes a tremendous effort. Grinding the coffee, working the steamer and the espresso, cleaning everything up afterwards; that's just too much effort for my morning coffee. The French Press is slightly easier, but it still involves grinding the coffee, using the kettle on the stove, and actually pressing the coffee. These are no longer easy tasks for me.
My life is filled with these kinds of choices, choices between what I would like to do and what I have to do to keep going. Convenience has become necessity. I am consistently compelled to choose the path of least effort, regardless of other outcomes. It is the nature of the beast.
Sunday, 20 December 2015
The Old Engine That Can't
I have regular moments when I say to myself "I just can't do this anymore" or "I don't want to do this anymore" or "Why the hell am I doing this". What happens almost immediately after that self concession, is me just getting on with it. I am not particularly brave, and certainly not inspirational. All I am is too stubborn, or perhaps too persistent, to let a little thing like ALS get in the way of having a good time.
These days, however, even a good time takes an awful lot out of me. Last night I found our party very difficult. I loved having my friends here. I loved all the food and drink. I loved the gift exchange. I loved the drama, the humour, the kindle of new and old relationships. I also had to take a time out about half way through where I could go and have a bit of a crying time. I was so physically defeated by the end of it all. I had to just sit for a while, then go to bed. I'm still feeling it today. I almost wish I could claim it as a hangover, but I just didn't, couldn't, drink that much wine.
It's really hard to explain to people the dichotomy of this disease. My body is dying, but not my brain. My pleasure senses are still there; it's my body, my energy level which can't keep up. My psyche doesn't want less, doesn't want to reduce my living engagement. My body does. Eventually the wearing of body becomes the wearing of spirit, but never the wearing of mind.
These days it's my spirit which is becoming exhausted as well, my will to keep going. My desire to stop is no longer theoretical, a whine in the morning against the pains of the day. I spend most of my time now fighting what is killing me. It's not the loss of body. It's the loss of willingness to keep going. I'm losing the desire to just get on with it, the persistence that tells me to quite whining and get going.
I'll be here a while yet, probably longer than I expect, likely shorter than others expect. I know I will leave too soon for those around me, but truth be told, it will be soon enough for me. Like the old locomotive slowly grinding to a drawn out halt on rusty train tracks, I am running out of steam. The fight is going out of me. I can feel it disappearing like the Calgary snows in a chinook, melting away.
I want people to understand that this is not a wish to die; I desperately want to live. Nor is this a desire to give up; I'm still pretty stubborn that way. When you see me, don't try to talk me out of how I feel; you can't. Don't try to tell me how lucky I am to be here still; I don't want to be. Don't try to find all the positives in my life; I know they are there. Just understand that this old engine that could is rapidly reaching the stage where it can't. And I know it.
These days, however, even a good time takes an awful lot out of me. Last night I found our party very difficult. I loved having my friends here. I loved all the food and drink. I loved the gift exchange. I loved the drama, the humour, the kindle of new and old relationships. I also had to take a time out about half way through where I could go and have a bit of a crying time. I was so physically defeated by the end of it all. I had to just sit for a while, then go to bed. I'm still feeling it today. I almost wish I could claim it as a hangover, but I just didn't, couldn't, drink that much wine.
It's really hard to explain to people the dichotomy of this disease. My body is dying, but not my brain. My pleasure senses are still there; it's my body, my energy level which can't keep up. My psyche doesn't want less, doesn't want to reduce my living engagement. My body does. Eventually the wearing of body becomes the wearing of spirit, but never the wearing of mind.
These days it's my spirit which is becoming exhausted as well, my will to keep going. My desire to stop is no longer theoretical, a whine in the morning against the pains of the day. I spend most of my time now fighting what is killing me. It's not the loss of body. It's the loss of willingness to keep going. I'm losing the desire to just get on with it, the persistence that tells me to quite whining and get going.
I'll be here a while yet, probably longer than I expect, likely shorter than others expect. I know I will leave too soon for those around me, but truth be told, it will be soon enough for me. Like the old locomotive slowly grinding to a drawn out halt on rusty train tracks, I am running out of steam. The fight is going out of me. I can feel it disappearing like the Calgary snows in a chinook, melting away.
I want people to understand that this is not a wish to die; I desperately want to live. Nor is this a desire to give up; I'm still pretty stubborn that way. When you see me, don't try to talk me out of how I feel; you can't. Don't try to tell me how lucky I am to be here still; I don't want to be. Don't try to find all the positives in my life; I know they are there. Just understand that this old engine that could is rapidly reaching the stage where it can't. And I know it.
Saturday, 19 December 2015
Christmas Party
It's the day of my annual Christmas Party today. Actually I should say "our" Christmas Party. My group of friends and I have been doing this ever since I came to Calgary almost six years ago. These days I don't do as much as I used to. Now Brad and others take over in the kitchen and I get shunted to the side. I don't mind; I wear out pretty easy now.
I've had to work hard to keep the guest list down this year. Our little group has changed over the years, with many of us having spouses or significant others now. What used to be a big party with a dozen people has morphed into a crowd of at least 24. There are so many people I would like to invite, old friends and new. Yet I cannot, simply because there is no room in the inn.
Oddly enough, I feel very sad today. I am not sure if this is a realization moment, a moment when I know that I will not likely do this again. Next year is shrouded in mist, not just for me but for all of us. The only difference is that the mist is a bit thinner in my case. I can see through, and I don't like the view for next Christmas. That makes me sad. It makes me sad that I can no longer entertain as I once did, that I have to give up so much of what I enjoyed in preparing for this party. There are so many things in my life like this these days, moments when I wonder if I will do it ever again.
It's not that I do nothing. I've been busy for days, shopping, wrapping gifts, making cookies. I started with wine well over a month ago, and it is barely ready today. It's a fast variety, so it should be reasonable. Even today I will be busy. I have to make stuffing for the turkey, then put it in the oven within the next hour. Then there are more gifts to wrap, more small tasks to be done.
Once Brad arrives, I will turn over the kitchen to him. Once other helpers arrive, they can do things like getting the wine out and getting the tables ready. There will be enough food and gifts that we will need at least two tables. I will get the mulling spices ready for the wine, but someone else will have to draw it out of the carboys.
There is so much to do, so much that I cannot and will not do. Maybe that is why I am sad. Maybe it's because Katherine won't be here tonight; she has a conflicting event at her church which she is committed to. I don't know I feel this way. As Katherine says, I will be happy when my friends come. She's right.
I've had to work hard to keep the guest list down this year. Our little group has changed over the years, with many of us having spouses or significant others now. What used to be a big party with a dozen people has morphed into a crowd of at least 24. There are so many people I would like to invite, old friends and new. Yet I cannot, simply because there is no room in the inn.
Oddly enough, I feel very sad today. I am not sure if this is a realization moment, a moment when I know that I will not likely do this again. Next year is shrouded in mist, not just for me but for all of us. The only difference is that the mist is a bit thinner in my case. I can see through, and I don't like the view for next Christmas. That makes me sad. It makes me sad that I can no longer entertain as I once did, that I have to give up so much of what I enjoyed in preparing for this party. There are so many things in my life like this these days, moments when I wonder if I will do it ever again.
It's not that I do nothing. I've been busy for days, shopping, wrapping gifts, making cookies. I started with wine well over a month ago, and it is barely ready today. It's a fast variety, so it should be reasonable. Even today I will be busy. I have to make stuffing for the turkey, then put it in the oven within the next hour. Then there are more gifts to wrap, more small tasks to be done.
Once Brad arrives, I will turn over the kitchen to him. Once other helpers arrive, they can do things like getting the wine out and getting the tables ready. There will be enough food and gifts that we will need at least two tables. I will get the mulling spices ready for the wine, but someone else will have to draw it out of the carboys.
There is so much to do, so much that I cannot and will not do. Maybe that is why I am sad. Maybe it's because Katherine won't be here tonight; she has a conflicting event at her church which she is committed to. I don't know I feel this way. As Katherine says, I will be happy when my friends come. She's right.
Friday, 18 December 2015
Pain In My Upper Arm
This disease is a real pain in the ass. It's also a pain in the arm, in the shoulder, in the hands, in the legs, and pretty much in every muscle as it loses its ability to hold, clench, grip or flex. This morning, while having Home Care in to do my exercises, I made the rather foolish decision to try to hold up my leg. In the course of this unwise activity, I pulled a muscle in my upper arm, most likely the upper part of my tricep, just down from where it attaches to the shoulder joint.
This muscle on my left arm hurts a lot these days, constantly feeling as if I have pulled it too hard or done some sort of damage to the tendon. The pain can go from mild, treated easily with Tylenol, to fairly severe, where no amount of analgesic seems to work. I try to stay away from opiod pain killers, but on occasion I need them, especially for this muscle pain.
Today it's not bad, a simple pull from trying to hold my leg in position while the Home Care Aide moved my other leg down to the bed from an exercise lift. I have no ability to use these muscles in my legs, so the HCA has to do it all. Sometimes there are two many limbs in play, forcing me to get involved more actively. I use my arms as best I can to hold a bent knee steady. Unfortunately that work is becoming increasingly difficult, putting more and more load on the ever failing muscles in my upper arms.
It was like this with my legs at times. They would hurt something fierce from the effort of doing that which I could once do easily. I know I was, and still am, overworking what remaining muscle is in place. There is no way around it. If you want to move, you have to do what you can to move. Once you stop, you'll never move again. If it hurts, too bad. I take a pain killer. That's the way it works.
Today I am not going to bother with the Tylenol. I know my arm will hurt all day. It hurts as I type. It will hurt as I wheel about my apartment. It will hurt as I drive to the grocery store. I will hurt as I make dinner tonight. It won't be bad enough to stop me, just annoying as hell all day. That too, is the way it works. Don't tell me ALS is painless. I'll show you better.
This muscle on my left arm hurts a lot these days, constantly feeling as if I have pulled it too hard or done some sort of damage to the tendon. The pain can go from mild, treated easily with Tylenol, to fairly severe, where no amount of analgesic seems to work. I try to stay away from opiod pain killers, but on occasion I need them, especially for this muscle pain.
Today it's not bad, a simple pull from trying to hold my leg in position while the Home Care Aide moved my other leg down to the bed from an exercise lift. I have no ability to use these muscles in my legs, so the HCA has to do it all. Sometimes there are two many limbs in play, forcing me to get involved more actively. I use my arms as best I can to hold a bent knee steady. Unfortunately that work is becoming increasingly difficult, putting more and more load on the ever failing muscles in my upper arms.
It was like this with my legs at times. They would hurt something fierce from the effort of doing that which I could once do easily. I know I was, and still am, overworking what remaining muscle is in place. There is no way around it. If you want to move, you have to do what you can to move. Once you stop, you'll never move again. If it hurts, too bad. I take a pain killer. That's the way it works.
Today I am not going to bother with the Tylenol. I know my arm will hurt all day. It hurts as I type. It will hurt as I wheel about my apartment. It will hurt as I drive to the grocery store. I will hurt as I make dinner tonight. It won't be bad enough to stop me, just annoying as hell all day. That too, is the way it works. Don't tell me ALS is painless. I'll show you better.
Thursday, 17 December 2015
A Simple Adjustment
Who'd a thunk it? I mean, I had no idea. It seems that the back of my wheelchair, the high, rigid back with support sides on it, can be turned upside down, making it a low-back instead of a high back. This very cool bit of technology design is extremely important for me. I just never realized it was so easy to do.
I recently got this rigid back for my wheelchair. It provides solid support for my failing back muscles as well as sideways support for my weakened core muscles. It makes me sit more firmly in my chair, reducing the strain on my back while ensuring I don't wobble unsteadily when moving about. The problem was that the back on the chair itself was too high.
The high back meant I could not lean backwards on a down-slope, or adjust into a sloped position when I wanted to go pee into my jug. The down-slope problem was dramatic; I literally toppled forward if I went down too steep a slope. If there was a bump or broken surface at the bottom of the slope, I would come to a sudden stop with the potential to throw me completely forward and out of my chair. Ask me how I know; I dare you.
The workaround for the last few weeks has been for me to take slopes either sideways or backwards, both of which created additional new problems for me. So I contacted Medichair, my supplier, asking if I could come in to get the back replaced. Jim, the salesperson, said he would come to my apartment but I was pretty sure we would be doing wholesale replacement of parts, so I insisted on coming in to the store.
I should have listened to Jim. About 15 minutes after arriving, he had simply reversed the chair back, something I could have easily done myself at home. He did have to adjust the seat clamps and make some final adjustments to the seat angle for balance, so there was something he could do, something he could have done on his way home from work. He drives right past my apartment.
It surprises me on occasion, just how much thought and engineering is put into the creation of some of these devices to make my life livable. I can understand why they are so expensive. It takes a lot to make them, while not a lot of people need them. I've ended up with a lower back chair which still provides sideways support, a chair which is safer on slopes, a chair in which I can slouch if I want. All it took was simple adjustment. I wish the rest of my life could be like that.
I recently got this rigid back for my wheelchair. It provides solid support for my failing back muscles as well as sideways support for my weakened core muscles. It makes me sit more firmly in my chair, reducing the strain on my back while ensuring I don't wobble unsteadily when moving about. The problem was that the back on the chair itself was too high.
The high back meant I could not lean backwards on a down-slope, or adjust into a sloped position when I wanted to go pee into my jug. The down-slope problem was dramatic; I literally toppled forward if I went down too steep a slope. If there was a bump or broken surface at the bottom of the slope, I would come to a sudden stop with the potential to throw me completely forward and out of my chair. Ask me how I know; I dare you.
The workaround for the last few weeks has been for me to take slopes either sideways or backwards, both of which created additional new problems for me. So I contacted Medichair, my supplier, asking if I could come in to get the back replaced. Jim, the salesperson, said he would come to my apartment but I was pretty sure we would be doing wholesale replacement of parts, so I insisted on coming in to the store.
I should have listened to Jim. About 15 minutes after arriving, he had simply reversed the chair back, something I could have easily done myself at home. He did have to adjust the seat clamps and make some final adjustments to the seat angle for balance, so there was something he could do, something he could have done on his way home from work. He drives right past my apartment.
It surprises me on occasion, just how much thought and engineering is put into the creation of some of these devices to make my life livable. I can understand why they are so expensive. It takes a lot to make them, while not a lot of people need them. I've ended up with a lower back chair which still provides sideways support, a chair which is safer on slopes, a chair in which I can slouch if I want. All it took was simple adjustment. I wish the rest of my life could be like that.
Wednesday, 16 December 2015
I Need Help
I've been doing a bit of Christmas baking lately. It's the usual suspects; Shortbread Cookies, Sugar Cookies, Mince Tarts. I have the ingredients for Rum Balls but haven't made them yet. I have other ingredients for future possibilities, as yet undetermined. They sit in the Safeway basket on my table, awaiting my decision on what to make and when to make it.
I do all my baking by hand; I don't own a blender of any sort. If the dough needs to be worked, I work it by hand. When ingredients need to be blended, I get a mixing spoon and I mix. The only small appliance I have for baking is a small hand blender, the kind that has interchangeable ends. I use it primarily for whipping cream. That's a job just too difficult for hand work.
All of this hand blending and dough working is difficult for my hands and arms. I can get things started, but usually after a few minutes I weaken to the point where I cannot go further. If I am by myself, I simply put the bowl down and leave it for 10 or 15 minutes. Then, once I have regained the strength in my arms, I start again. Fortunately Katherine is with me most of the time, and she becomes my extra set of arms.
Last night was a great example of this. I wanted to make Shortbread dough so that my daughter, Kate, and her friend Margaret, can make Shortbread Cookies when they come for dinner tonight. It's a lot of work to cut in the butter, especially when it is a bit hard, still cool from the fridge. I got things started with my pastry cutter, but after a few minutes I had to stop. Katherine stepped in and finished making the dough, doing a great job of blending and folding. Between the two of us, we had that dough punched into shape in no time.
I can still bake. I can still cook. I can still mix and blend. It's just a bit more difficult these days. I tire easily. I need help. Would I do it without Katherine? I don't know. Maybe. But it would sure be a lot tougher. Help is a wonderful thing.
I do all my baking by hand; I don't own a blender of any sort. If the dough needs to be worked, I work it by hand. When ingredients need to be blended, I get a mixing spoon and I mix. The only small appliance I have for baking is a small hand blender, the kind that has interchangeable ends. I use it primarily for whipping cream. That's a job just too difficult for hand work.
All of this hand blending and dough working is difficult for my hands and arms. I can get things started, but usually after a few minutes I weaken to the point where I cannot go further. If I am by myself, I simply put the bowl down and leave it for 10 or 15 minutes. Then, once I have regained the strength in my arms, I start again. Fortunately Katherine is with me most of the time, and she becomes my extra set of arms.
Last night was a great example of this. I wanted to make Shortbread dough so that my daughter, Kate, and her friend Margaret, can make Shortbread Cookies when they come for dinner tonight. It's a lot of work to cut in the butter, especially when it is a bit hard, still cool from the fridge. I got things started with my pastry cutter, but after a few minutes I had to stop. Katherine stepped in and finished making the dough, doing a great job of blending and folding. Between the two of us, we had that dough punched into shape in no time.
I can still bake. I can still cook. I can still mix and blend. It's just a bit more difficult these days. I tire easily. I need help. Would I do it without Katherine? I don't know. Maybe. But it would sure be a lot tougher. Help is a wonderful thing.
Tuesday, 15 December 2015
Bleeding Toes McBride
I'm laying on my bed, sort of half sitting up, my shoulders slumped against the headboard. The purpose in this position is to keep my foot elevated, in order to give my toe a chance to stop bleeding. Cutting my toenails is an adventure, one almost certainly to end up in a failed clip at some point, snipping a piece of skin, producing blood. It\s not just when I do this myself. So far at least two of my care workers have snipped me. Katherine had that pleasure today.
It happens for two reasons. First of all, my toes don't hold position at all when someone goes to clip a toenail. They move, ever so slightly, from the simple pressure of gravity, or perhaps from a shake within my upper body. Regardless, my toes fail to present a steady platform for snippage. Secondly, my toenails themselves are curved, especially on my left foot. This happens because my toes themselves are forever curled over these days, like the claws on a bird's foot, unable to straighten without muscle effort, something I don't have. So determining the end of the nail underneath that curve can be nearly impossible.
I've clipped myself more than once when doing them myself, so I know how difficult it is. I hold no ill will towards anyone else trying to accomplish this task, failing to make a clean getaway. It's just one of those things that happens now and again. The problem is the bleeding.
My feet are almost constantly swollen, engorged with blood pooling in them, thanks to gravity and the failed muscles in my upper legs, the muscles which would normally push the blood back up. The blood elevator in my legs only goes down; it don't come back up. So there is this extra blood pressing into my toes. Not only does it make them swollen and purple, it adds volume to a bleeder. On top of that, I take an anti-coagulant to ensure blood clots don't form in my upper leg; I want to avoid another DVT. This means when I get a cut, it takes a while to stop bleeding.
Put together extra blood pressure, more blood volume, and slow coagulation; it explains my my toes bleed so heartily. The best way to stop this is to keep my toes elevated for a while, taking the blood volume and pressure away. That way what limited coagulation power I have can do its job. End result? I get to sit in bed for another hour. It's not all bad.
Monday, 14 December 2015
Another Zopiclone Morning
I'm barely functioning right now. The effort involved in typing, the thought involved in creating these words, they seem beyond me right now, as if happening in a dream somewhere outside my consciousness. Ten hours ago, I took a Zopiclone; I was tired, exhausted really, but I couldn't get my mind to shut down, to rest. So I took the pill. It's still affecting me, still making my eyelids heavy, still disconnecting my thoughts from my body.
I had trouble last night sleeping because I started to worry about how I will pay for groceries and such in January.I get about $1,550 from AISH and CPP-D. That is now the sum and total of my income. On the other side of the ledger, my mortgage is $475 every two weeks. My condo fees are $416 a month. My taxes are $125 a month. That's roughly $1.500 a month. That leaves me $50 to cover utilities, groceries, gas, food, etc, etc, etc,
At a minimum I run about $500 short each month. Katherine helps. She buys most of my groceries these days. That takes care of eating. However without electricity, cooking becomes a major challenge Then there's the cost of fuel, maintenance, insurance and registration for my truck. That's another thing which will have to go soon enough. Then there are sill things like entertainment, clothing, wheelchair repairs, and whatever else have you. Maybe it's more than $500 a month.
I've asked my kids to help; I am sure they will where they can. On the other hand, there is only so much they can do. In the end, I simply didn't die on time. I'm supposed to be happy about this, but it keeps me awake at night. Hence the Zopiclone. Hence my dozy writing.
I think I'm gonna go take a nap.
I had trouble last night sleeping because I started to worry about how I will pay for groceries and such in January.I get about $1,550 from AISH and CPP-D. That is now the sum and total of my income. On the other side of the ledger, my mortgage is $475 every two weeks. My condo fees are $416 a month. My taxes are $125 a month. That's roughly $1.500 a month. That leaves me $50 to cover utilities, groceries, gas, food, etc, etc, etc,
At a minimum I run about $500 short each month. Katherine helps. She buys most of my groceries these days. That takes care of eating. However without electricity, cooking becomes a major challenge Then there's the cost of fuel, maintenance, insurance and registration for my truck. That's another thing which will have to go soon enough. Then there are sill things like entertainment, clothing, wheelchair repairs, and whatever else have you. Maybe it's more than $500 a month.
I've asked my kids to help; I am sure they will where they can. On the other hand, there is only so much they can do. In the end, I simply didn't die on time. I'm supposed to be happy about this, but it keeps me awake at night. Hence the Zopiclone. Hence my dozy writing.
I think I'm gonna go take a nap.
Sunday, 13 December 2015
Pharming
I've been reading an article about "pharming". The terms used to refer to farmers using antibiotics or other medications when rearing animals. The term has change; now it refers to a process where we produce an animal which contains medicinal values which humans can consume. For example, one company has a herd of genetically modified goats which produce milk which contains the human protein antithrombin. Antithrombin helps prevent blood clots that could lead to a stroke or heart attack, something of clear and present interest to me and a great many other people.
This is an amazing bit of science, rife with an equally large pool of ethical questions. Should we even be doing this? This is not a "natural" breeding program where we genetically select by mating animals which have qualities we desire. Breeding programs, a slower, more understandable form of genetic modification, have been going on for as long as man has domesticated animals. Transgenic animals are ones produced in pharming, where a gene from one species, in the goat case a human gene, is introduced into another species, the goat.
The gene selection is very specific. Thousands of examples have proven that we won't get a satyr out of this program. There will be no goats with human features or intelligence. This gene selection does one thing, and one thing alone. It makes the goats produce antithrombin in their milk. That's it. No Franken-goat.
So what's the big deal? Antithrombin is typically produced from human plasma, from blood donations. It's an expensive and difficult process, meaning medications with antithrombin which could save a great many lives, are costly and in short supply. However each genetically modified goat can produce a kilogram of antithrombin each year; it takes 50,000 people to donate that same amount. And the goats don't seem to notice anything at all. They just produce milk, like they always have.
Science is doing, and learning, amazing things. I am certain they will one day come up with a cure for ALS. I would mind if it was in goat's milk, or chicken's eggs, or even in brussel sprouts. I'd take the cure, any day. And I would thank the goat profusely.
This is an amazing bit of science, rife with an equally large pool of ethical questions. Should we even be doing this? This is not a "natural" breeding program where we genetically select by mating animals which have qualities we desire. Breeding programs, a slower, more understandable form of genetic modification, have been going on for as long as man has domesticated animals. Transgenic animals are ones produced in pharming, where a gene from one species, in the goat case a human gene, is introduced into another species, the goat.
The gene selection is very specific. Thousands of examples have proven that we won't get a satyr out of this program. There will be no goats with human features or intelligence. This gene selection does one thing, and one thing alone. It makes the goats produce antithrombin in their milk. That's it. No Franken-goat.
So what's the big deal? Antithrombin is typically produced from human plasma, from blood donations. It's an expensive and difficult process, meaning medications with antithrombin which could save a great many lives, are costly and in short supply. However each genetically modified goat can produce a kilogram of antithrombin each year; it takes 50,000 people to donate that same amount. And the goats don't seem to notice anything at all. They just produce milk, like they always have.
Science is doing, and learning, amazing things. I am certain they will one day come up with a cure for ALS. I would mind if it was in goat's milk, or chicken's eggs, or even in brussel sprouts. I'd take the cure, any day. And I would thank the goat profusely.
Saturday, 12 December 2015
I'm Still Sleepy
I had to get out of bed quickly today. It was one of those mornings when the strongest calling I felt was the calling to go to the toilet. Urgency was high, but not dramatic. So I got up, took my pills, went into the bathroom, washed my jug, and used the toilet. Nothing bad happened, other than a couple of stains on my bed sheet. It's okay, they sheets needed changing anyway.
The whole point of this is that I got up quickly. I used to do that all the time, jump up out of bed and launch myself into my day. Now I need time, time to build up my energy, time to gain focus on my muscles, time to adjust and move. Jumping out of bed is something Katherine does; for me, it's more like climbing up out of a pit. My M-rail is my ladder. My arms lift my bulk upwards. My legs are weights holding me down. I did this quickly today; that is sarcasm. I did this without build up time today.
The impact of this "sudden" getting up is that I remain sleepy even though I slept for more than 10 hours last night. I am yawning, rubbing my eyes, holding out against drooping eyelids, even though I've been up for a couple of hours now, or perhaps because of it. I have not yet fully awakened, even though I am going through the motions of wakefulness. I'm stumbling, metaphorically, through my day's start. I won't say morning; it's long past that.
I've managed to make myself a second cup of coffee; Katherine made the first one for me. I've had some water to drink, hydrating a tired and worn set of eyes. I've eaten some breakfast, although the energy has yet to enliven my system. What I really feel like doing is going back to bed for a "do over", resting perhaps for another hour or two, or three, then doing the whole getting up routine again, only this time more slowly.
Nothing is easy; nothing is fast. Even I have to remember that. When I push too hard, I inevitably pay the price.
The whole point of this is that I got up quickly. I used to do that all the time, jump up out of bed and launch myself into my day. Now I need time, time to build up my energy, time to gain focus on my muscles, time to adjust and move. Jumping out of bed is something Katherine does; for me, it's more like climbing up out of a pit. My M-rail is my ladder. My arms lift my bulk upwards. My legs are weights holding me down. I did this quickly today; that is sarcasm. I did this without build up time today.
The impact of this "sudden" getting up is that I remain sleepy even though I slept for more than 10 hours last night. I am yawning, rubbing my eyes, holding out against drooping eyelids, even though I've been up for a couple of hours now, or perhaps because of it. I have not yet fully awakened, even though I am going through the motions of wakefulness. I'm stumbling, metaphorically, through my day's start. I won't say morning; it's long past that.
I've managed to make myself a second cup of coffee; Katherine made the first one for me. I've had some water to drink, hydrating a tired and worn set of eyes. I've eaten some breakfast, although the energy has yet to enliven my system. What I really feel like doing is going back to bed for a "do over", resting perhaps for another hour or two, or three, then doing the whole getting up routine again, only this time more slowly.
Nothing is easy; nothing is fast. Even I have to remember that. When I push too hard, I inevitably pay the price.
Friday, 11 December 2015
I'm Fat; Grossly Obese, Morbidly Flabby, A Blubber Balloon.
I'm fat. I'm really fat. At 257 pounds, I weigh more than I ever have in my life. I'm more than 100 pounds heavier than I was the day I got married all those years ago. Since getting diagnosed with ALS, I've gained 40 pounds. In the last year I've gained 17 pounds. I'm not just a bit fat. I'm grossly obese, a lump of gelatinous dead weight sitting in a wheelchair. My body looks disgusting; my shape is lumpy round. I hate this.
It's not just that I am fat. It's that all of this extra weight is around my belly and chest. I've had to buy new pants with a bigger waistline. For the first time in my life, I have boob fat under my arms. I look terrible. Yet my arms and legs are getting skinnier every day. I'm like the Stay Puff marshmallow man, only with twigs for my limbs instead of a layer of well distributed subcutaneous flab. I hate this.
It's all come to a bit of a head this morning. My HCA was helping dry me off after my shower. While I was sitting there, naked on the edge of the bed, I looked at myself in the mirror and saw the horror of my own body. I commented to her about how fat I was getting. She, wisely, said little. Then, not 15 minutes later, one of the HCA Supervisors came my apartment to discuss a problem; a couple of the HCA's had complained that my legs were too heavy to life. MY LEGS! Dammit, I'm losing mass in my legs. Alas, Katherine also says my legs are heavy. With my weakened arms, they seem pretty heavy to me too.
So here I am, sitting in my wheelchair, appalled at my shape and condition, with almost no ability to change it. I can reduce my food intake, reduce my alcohol intake. These things will certainly help me reduce my body size. On the other hand, reducing my food intake is almost certain to have an impact on the progression of ALS, and not a good one. There is a lot of research supporting this. Reducing my alcohol intake is certainly a good thing for my body, but not much fun for my life. I like wine.
This is what ALS has done to me. It has made my body a mess, my life a mess. I'm going to die from this illness. All I want to do is be happy until I die. Instead, I get to be this fat, ugly, blubber filled balloon with no mobility, no activity, no ability to get out there and be alive. I hate this fucking disease!
It's not just that I am fat. It's that all of this extra weight is around my belly and chest. I've had to buy new pants with a bigger waistline. For the first time in my life, I have boob fat under my arms. I look terrible. Yet my arms and legs are getting skinnier every day. I'm like the Stay Puff marshmallow man, only with twigs for my limbs instead of a layer of well distributed subcutaneous flab. I hate this.
It's all come to a bit of a head this morning. My HCA was helping dry me off after my shower. While I was sitting there, naked on the edge of the bed, I looked at myself in the mirror and saw the horror of my own body. I commented to her about how fat I was getting. She, wisely, said little. Then, not 15 minutes later, one of the HCA Supervisors came my apartment to discuss a problem; a couple of the HCA's had complained that my legs were too heavy to life. MY LEGS! Dammit, I'm losing mass in my legs. Alas, Katherine also says my legs are heavy. With my weakened arms, they seem pretty heavy to me too.
So here I am, sitting in my wheelchair, appalled at my shape and condition, with almost no ability to change it. I can reduce my food intake, reduce my alcohol intake. These things will certainly help me reduce my body size. On the other hand, reducing my food intake is almost certain to have an impact on the progression of ALS, and not a good one. There is a lot of research supporting this. Reducing my alcohol intake is certainly a good thing for my body, but not much fun for my life. I like wine.
This is what ALS has done to me. It has made my body a mess, my life a mess. I'm going to die from this illness. All I want to do is be happy until I die. Instead, I get to be this fat, ugly, blubber filled balloon with no mobility, no activity, no ability to get out there and be alive. I hate this fucking disease!
Thursday, 10 December 2015
Depression and Suicide
I've been thinking more about my visit to the ALS clinic yesterday. One of the sessions was with the clinic's Social Worker. It was more of a counseling session this time rather than any discussions about finances, AISH, or other social services. The bulk of discussion focused on depression and suicidal thinking.
It should come as no surprise that I struggle with depression. I'm terminally ill with a devastating disease; that would depress the hell out of almost anyone. It's no surprise that I think about suicide; I'm going to have to deal with the end of my own life fairly soon, at least that's how it looks. I will need something in place. Thinking about is just what happens.
I don't think of it as suicide. I think of it as end of life planning. Yes, I will likely have to take some sort of action to end my life, unless something happens which takes that action for me. However this is not the act of some angst ridden twenty-something, nor the action of someone struggling desperately with clinical depression or schizophrenic voices. This is the logical action of a person dealing with a perpetually declining physical disablement.
I regularly wake up, or have moments in the day, or go to bed asking myself why the hell I am still fighting this disease, why on earth I want to keep going. Yet I do keep going. It depresses me sometimes, plenty of times, when I contemplate what I have to do to keep going, what will happen if I keep going. Yet I keep going. I think about how much easier it would be if I just finished it all. Yet I keep going.
There is a lot of difference between thinking about suicide and actually doing it. There is a lot of difference between being depressed and clinical depression. There is a lot of difference between wishing I would die in my sleep and actually taking action to cause my death in my sleep. The simple fact of the matter is that I am ready to go, willing to go, but not wanting to go.
I'll be here for a while yet.
It should come as no surprise that I struggle with depression. I'm terminally ill with a devastating disease; that would depress the hell out of almost anyone. It's no surprise that I think about suicide; I'm going to have to deal with the end of my own life fairly soon, at least that's how it looks. I will need something in place. Thinking about is just what happens.
I don't think of it as suicide. I think of it as end of life planning. Yes, I will likely have to take some sort of action to end my life, unless something happens which takes that action for me. However this is not the act of some angst ridden twenty-something, nor the action of someone struggling desperately with clinical depression or schizophrenic voices. This is the logical action of a person dealing with a perpetually declining physical disablement.
I regularly wake up, or have moments in the day, or go to bed asking myself why the hell I am still fighting this disease, why on earth I want to keep going. Yet I do keep going. It depresses me sometimes, plenty of times, when I contemplate what I have to do to keep going, what will happen if I keep going. Yet I keep going. I think about how much easier it would be if I just finished it all. Yet I keep going.
There is a lot of difference between thinking about suicide and actually doing it. There is a lot of difference between being depressed and clinical depression. There is a lot of difference between wishing I would die in my sleep and actually taking action to cause my death in my sleep. The simple fact of the matter is that I am ready to go, willing to go, but not wanting to go.
I'll be here for a while yet.
Wednesday, 9 December 2015
Steady As She Goes
I'm exhausted. I could go to bed right now and sleep until tomorrow. And it's only 5:00 PM. I may be tired thanks to only sleeping 10 hours last night. More likely it's because I spent most of my day at the ALS clinic, getting measured, charted, weighed and test again. Four hours in the clinic is enough to exhaust anyone. Katherine says I am tired because I am "boring"; I think she means I am bored, but there is enough uncertainty within me to forestall the question.
An ALS clinic visit is much the same each time. I get my breathing tested; this time my lung volume capacity is down by 5% to 80%. This is the first major shift since diagnosis. My diaphragm performance is also down although it, along with my lung volume is still well in the normal range. Like everything else about me, I started strong so it takes a long time to get me to the weak range.
My upper body muscles, on the other hand, are showing definite signs of weakening. While still measured as a mild loss with a slow progression, the weakness is clearly there, especially in my shoulders and upper arms. The neurologist talks a good game but there is nothing which can hide the physical reality. Nonetheless, I'm still fairly strong, at least when compared to "normal". Even after becoming weaker, I am stronger than most.
The really odd part is where I am strong versus weak. ALS is going after my shoulders and upper arms first. For most, it attacks the fingers and hands first. There is a greater density of neurons there, so you would expect more failure there. On the other hand, pun intended, if you look at the shoulder muscles, there are fewer neurons to attack. In most patients, ALS goes for the big cluster first. In me, it's moving up, steadily, from my legs to my middle body to my shoulders. Eventually it will make its way to my hands, hopefully not in any great hurry.
That's one of the worst problems with ALS, it's individuality. It attacks each of us differently. The ALS experience is almost entirely subjective once you get past the major element, the loss of motor neurons. The where of it, the how of it, the why of it all change from person to person. That's why I've agreed to be part of a research study using cognitive testing and an MRI. They want to know how my ALS is working. They can compare that with others, and with me as I progress. It's won't provide a cure, but it will help with understanding. Then, perhaps one day...
An ALS clinic visit is much the same each time. I get my breathing tested; this time my lung volume capacity is down by 5% to 80%. This is the first major shift since diagnosis. My diaphragm performance is also down although it, along with my lung volume is still well in the normal range. Like everything else about me, I started strong so it takes a long time to get me to the weak range.
My upper body muscles, on the other hand, are showing definite signs of weakening. While still measured as a mild loss with a slow progression, the weakness is clearly there, especially in my shoulders and upper arms. The neurologist talks a good game but there is nothing which can hide the physical reality. Nonetheless, I'm still fairly strong, at least when compared to "normal". Even after becoming weaker, I am stronger than most.
The really odd part is where I am strong versus weak. ALS is going after my shoulders and upper arms first. For most, it attacks the fingers and hands first. There is a greater density of neurons there, so you would expect more failure there. On the other hand, pun intended, if you look at the shoulder muscles, there are fewer neurons to attack. In most patients, ALS goes for the big cluster first. In me, it's moving up, steadily, from my legs to my middle body to my shoulders. Eventually it will make its way to my hands, hopefully not in any great hurry.
That's one of the worst problems with ALS, it's individuality. It attacks each of us differently. The ALS experience is almost entirely subjective once you get past the major element, the loss of motor neurons. The where of it, the how of it, the why of it all change from person to person. That's why I've agreed to be part of a research study using cognitive testing and an MRI. They want to know how my ALS is working. They can compare that with others, and with me as I progress. It's won't provide a cure, but it will help with understanding. Then, perhaps one day...
Tuesday, 8 December 2015
I'm Tired Of ALS
I awoke this morning after 12 full hours of restful sleep. It was a normal kind of morning. I awoke with sore muscles, my hands shaking like mad, and the mere effort of sitting up made me tired enough that I wanted to go back to bed, to sleep once again. Yet I persevered, got out of bed, got myself a coffee. Here I am, ready to share my story once again.
The trouble is that it's the same old story, only worse. Nothing ever changes with this story. Every morning I get up shaking, weak, sore and tired. Every morning I force myself to get going, to get out of bed, to get mobile. Every morning I come to this keyboard to share the story of my life. It's getting boring. I need something new to happen, something that has nothing to do with ALS.
There's the rub. Everything in my life is touched by ALS. My eating patterns, my sleeping patterns, my activity patterns, even my bathroom patterns. There is nothing in my life free from this. The only true variation is that I get worse and worse every day; not a lot, sometimes not even enough for me to notice. But it's happening. I can feel it. I can sense it. I know it.
It's even more noticeable if you look at it in the broader scale. Three years ago I slept a normal night for most, somewhere between 7 and 8 hours a night. Two years ago it was 10 hours. A year ago it was 12 hours. Now I sleep for as much as 14 hours a night, sometimes more, sometimes less. My up time has completely reversed from normal life. Three years ago I could walk. Two years ago I could dance in my wheelchair. A year ago I was able to push myself up the driveway from my apartment. These days, the hallway is a long effort.
Feeling tired all the time is the worst. I never get away from it. I never get a chance to feel refreshed and empowered for the day. I shake more when I am tired. My eyes don't focus as well when I am tired. I don't feel like eating or drinking when I am tired. I'm tired of feeling tired. This sucks.
The trouble is that it's the same old story, only worse. Nothing ever changes with this story. Every morning I get up shaking, weak, sore and tired. Every morning I force myself to get going, to get out of bed, to get mobile. Every morning I come to this keyboard to share the story of my life. It's getting boring. I need something new to happen, something that has nothing to do with ALS.
There's the rub. Everything in my life is touched by ALS. My eating patterns, my sleeping patterns, my activity patterns, even my bathroom patterns. There is nothing in my life free from this. The only true variation is that I get worse and worse every day; not a lot, sometimes not even enough for me to notice. But it's happening. I can feel it. I can sense it. I know it.
It's even more noticeable if you look at it in the broader scale. Three years ago I slept a normal night for most, somewhere between 7 and 8 hours a night. Two years ago it was 10 hours. A year ago it was 12 hours. Now I sleep for as much as 14 hours a night, sometimes more, sometimes less. My up time has completely reversed from normal life. Three years ago I could walk. Two years ago I could dance in my wheelchair. A year ago I was able to push myself up the driveway from my apartment. These days, the hallway is a long effort.
Feeling tired all the time is the worst. I never get away from it. I never get a chance to feel refreshed and empowered for the day. I shake more when I am tired. My eyes don't focus as well when I am tired. I don't feel like eating or drinking when I am tired. I'm tired of feeling tired. This sucks.
Monday, 7 December 2015
Christmas Baking Day
It's Christmas baking day today. Actually the preparations started a few days ago, with a shopping trip, of course. Then, last night, Katherine helped me make a batch of Shortbread Cookies using my Grandmother's recipe. We also made a batch of pastry dough for the mince tarts and butter tarts planned for today. So now my kitchen is in full swing for a baking day.
My friends Emily and Joanna will come over today. Katherine is out picking up a few things and doing some other errands; she will be here shortly. Then the group of us will start baking up a storm. I think I would like to start with the mince tarts and butter tarts. Then we can move on to some gluten free cookies for Joanna. After that I think we might make gingerbread cookies and Christmas sugar cookies. I have the ingredients, and plenty of icing sugar.
I love this kind of thing, a group effort to create something. I love starting with ingredients that finish by giving you wonderful food, or wonderful wine. I love to create. The kitchen seems a natural outlet for all this. I get to take stuff and make stuff, whether it's a cake, a batch of cookies, or a five course dinner. It all comes from fresh ingredients and my own hands.
The problem is, of course, that I am losing my strength in those hands. Last night Katherine had to cut in the pastry dough and mix the shortbread dough. I could start them. I could help a bit here and there. I just wasn't strong enough to do the full show. I could blend and mix for a bit, then my arms and hands would be too tired to continue.
Thankfully, Katherine was there to help last night. Joanna and Emily will be here to help today. Between the four of us, we should get a great batch of goodies for the season. I suspect I will have to make more as the month goes on. I don't mind. It's fun, as long as someone can help me with the mixing.
My friends Emily and Joanna will come over today. Katherine is out picking up a few things and doing some other errands; she will be here shortly. Then the group of us will start baking up a storm. I think I would like to start with the mince tarts and butter tarts. Then we can move on to some gluten free cookies for Joanna. After that I think we might make gingerbread cookies and Christmas sugar cookies. I have the ingredients, and plenty of icing sugar.
I love this kind of thing, a group effort to create something. I love starting with ingredients that finish by giving you wonderful food, or wonderful wine. I love to create. The kitchen seems a natural outlet for all this. I get to take stuff and make stuff, whether it's a cake, a batch of cookies, or a five course dinner. It all comes from fresh ingredients and my own hands.
The problem is, of course, that I am losing my strength in those hands. Last night Katherine had to cut in the pastry dough and mix the shortbread dough. I could start them. I could help a bit here and there. I just wasn't strong enough to do the full show. I could blend and mix for a bit, then my arms and hands would be too tired to continue.
Thankfully, Katherine was there to help last night. Joanna and Emily will be here to help today. Between the four of us, we should get a great batch of goodies for the season. I suspect I will have to make more as the month goes on. I don't mind. It's fun, as long as someone can help me with the mixing.
Sunday, 6 December 2015
Stupid Is As Stupid Does
The other day I wrote a blog post in support of Mauril Bélanger, the Ottawa-Vanier MP, a Canadian parliamentarian who, at the peak of his career, has been diagnosed with Bulbar ALS. This form of ALS is one of the toughest; it move faster than other forms, usually stealing your voice first. In addition, I posted a Tweet of support and care.
Following my Tweet, I was included in a thread from another person in the Twitterverse offering advice to Mr. Bélanger. Her first tweet was that he should engage in strong exercise, something which is a definite "NO" for people with ALS. Strong exercise simply exhausts the body and accelerates the symptoms. I corrected her, to which she replied "I think you can exercise your way out of any disease." I referred her again to the facts, to which she further replied "I do not know the disease specifics...". She continued with additional bad advice, blithely unaware of the damage she could cause if anyone was fool enough to believe her.
I wondered what kind of person would give bad medical advice to a terminally ill person without even knowing about the disease, so I read her profile on Twitter. She describes herself as a "Slide whistler, strummer & la la la, drummer & acro belly jiggler/wiggler, flipper, fiddler & hoofer, tangler, verb conjugator, bikini kickboxer, teacher". Nowhere in this description do I see anything with any sort of medical credential. She does little credit to her claim as a teacher.
This is one of the worst things about ALS. It happens with other diseases too. People with no idea what they are talking about, no education, no facts, no knowledge... these people come along propounding their view without consideration for the person on the other end. Their panacea is the worst kind of snake oil sales. I won't name this person in my blog; to do so would simply justify her existence.
If you don't really know about ALS, or some other topic on which you have an opinion, you have two choices. You can stay quiet, listening to those who know, learning what you can. Your other choice is to say something stupid. Of course, it is the way of human nature, particularly those who know the least, to comment on things of which they know nothing.
If you really wish to support someone where you have little knowledge, here is my advice; admit that you know little, then offer your love, care and compassion. There is not a one of us who doesn't know about love, care and compassion. There is nobody with an illness who doesn't need to hear that you love them, care about them, and are concerned for their welfare.
Following my Tweet, I was included in a thread from another person in the Twitterverse offering advice to Mr. Bélanger. Her first tweet was that he should engage in strong exercise, something which is a definite "NO" for people with ALS. Strong exercise simply exhausts the body and accelerates the symptoms. I corrected her, to which she replied "I think you can exercise your way out of any disease." I referred her again to the facts, to which she further replied "I do not know the disease specifics...". She continued with additional bad advice, blithely unaware of the damage she could cause if anyone was fool enough to believe her.
I wondered what kind of person would give bad medical advice to a terminally ill person without even knowing about the disease, so I read her profile on Twitter. She describes herself as a "Slide whistler, strummer & la la la, drummer & acro belly jiggler/wiggler, flipper, fiddler & hoofer, tangler, verb conjugator, bikini kickboxer, teacher". Nowhere in this description do I see anything with any sort of medical credential. She does little credit to her claim as a teacher.
This is one of the worst things about ALS. It happens with other diseases too. People with no idea what they are talking about, no education, no facts, no knowledge... these people come along propounding their view without consideration for the person on the other end. Their panacea is the worst kind of snake oil sales. I won't name this person in my blog; to do so would simply justify her existence.
If you don't really know about ALS, or some other topic on which you have an opinion, you have two choices. You can stay quiet, listening to those who know, learning what you can. Your other choice is to say something stupid. Of course, it is the way of human nature, particularly those who know the least, to comment on things of which they know nothing.
If you really wish to support someone where you have little knowledge, here is my advice; admit that you know little, then offer your love, care and compassion. There is not a one of us who doesn't know about love, care and compassion. There is nobody with an illness who doesn't need to hear that you love them, care about them, and are concerned for their welfare.
Saturday, 5 December 2015
No Tears Today
I'm not sure what's worse, the physical weight of this disease or the emotional weight. While my body is wasting, it's only my body that suffers. The emotions, on the other hand, are felt far and wide, by those close to me and by those distant in both relationship and space. I can handle my own emotions most of the time; it's the emotions of others, those I love, like Katherine, which are hard for me.
There has been a substantial decline in my torso and arms over the last few months. It seems to have started when I came down with a Urinary Tract Infection which put me in hospital. Last night, while laying in bed talking, the subject of my inability within this context became part of the discussion. Katherine said "You're tired. Go to sleep." I replied, "I'm going to be tired for the rest of my life. I need you to help me here, to take more initiative in helping me deal with this."
Katherine started to cry. The tears were not that I had asked her to do more; she is constantly doing more in every way. The tears were for the realization that my condition had worsened, and is worsening. Her tears were for the inevitable. It will be hard enough for her to be with me as I go through this time of progression. It will be even harder when I hit the sudden stop at the bottom.
There are others who face this dilemma, facing the reality of loss in the here and now, the inevitability of where this loss takes me next. Oddly enough, I am mostly okay with this. It's the emotions which this reality creates in those I love that bothers me the most. I hate to see Katherine cry. I hate to hear the distress in my Mom's voice, the resignation in the voices of my family.
This morning I asked Katherine to think of all the good things which would happen today, all of the nice things which were going on in our lives. She is having a fellowship time with a baptismal candidate from her church. I am going to meet Kate's boyfriend and his three sons. I get to cook them dinner; BBQ Ribs and Beans, sausages, Spanish Rice, and Bean Salad. We both have time this evening to spend with others, knowing that we will have tomorrow.
While there is plenty of sadness in my situation to go around, we need to remember that there are plenty of joyful moments in this day, in every day. There will be a time for tears; it is not today.
There has been a substantial decline in my torso and arms over the last few months. It seems to have started when I came down with a Urinary Tract Infection which put me in hospital. Last night, while laying in bed talking, the subject of my inability within this context became part of the discussion. Katherine said "You're tired. Go to sleep." I replied, "I'm going to be tired for the rest of my life. I need you to help me here, to take more initiative in helping me deal with this."
Katherine started to cry. The tears were not that I had asked her to do more; she is constantly doing more in every way. The tears were for the realization that my condition had worsened, and is worsening. Her tears were for the inevitable. It will be hard enough for her to be with me as I go through this time of progression. It will be even harder when I hit the sudden stop at the bottom.
There are others who face this dilemma, facing the reality of loss in the here and now, the inevitability of where this loss takes me next. Oddly enough, I am mostly okay with this. It's the emotions which this reality creates in those I love that bothers me the most. I hate to see Katherine cry. I hate to hear the distress in my Mom's voice, the resignation in the voices of my family.
This morning I asked Katherine to think of all the good things which would happen today, all of the nice things which were going on in our lives. She is having a fellowship time with a baptismal candidate from her church. I am going to meet Kate's boyfriend and his three sons. I get to cook them dinner; BBQ Ribs and Beans, sausages, Spanish Rice, and Bean Salad. We both have time this evening to spend with others, knowing that we will have tomorrow.
While there is plenty of sadness in my situation to go around, we need to remember that there are plenty of joyful moments in this day, in every day. There will be a time for tears; it is not today.
Friday, 4 December 2015
Not An Open Letter To Mauril Bélanger
I would like to write an open letter to Mauril Bélanger, the Ottawa-Vanier MP and candidate for Speaker of the House, who was recently diagnosed with ALS. I would like to tell him what to expect and what he can do, both as an individual and as a public figure, in dealing with this horrible disease. I would like to offer him guidance and comfort, words of wisdom and counsel. I would like to tell him how to deal with his illness, his family, his life with ALS. I can do none of those things.
ALS is a horrible disease. One of the worst horrors of this illness is its unpredictability, the randomness of it all, the way it strikes one person one way, and another person a different way. For Mauril, this scourge has started with his speech. There is an awful irony in a politician first losing his ability to speak. Bulbar ALS, the kind he seems to have, typically moves faster, takes more at a time. His path will be difficult.
Mr. Bélanger is a month older than I am, right in the typical age range for this illness. He is at the peak of his career, also typical for people who get ALS. He is an active, outgoing man; a man with a family, children, grandchildren. He will need all of his strength, all of his family's strength, all of his community's strength as he deals with his diagnosis, and his disease. As an MP with 20 years in the house, he is entitled to, and will receive plenty of financial support, plenty of physical support. It's the emotional support which will be most important, for him, for his family, for his community.
There are only two pieces of advice I would give to Mauril Bélanger. The first would be a repeat of the advice my neurologist gave to me; if there is anything you want to do, do it sooner rather than later.
The second piece would be my own, albeit derived from something my brother Peter once said; you're going to live until you die, make sure that you live before you die. Take every opportunity to tell someone you love them. Grasp every chance you have to live your life. Find the joy, humour and happiness where ever you can. Live, with ALS.
ALS is a horrible disease. One of the worst horrors of this illness is its unpredictability, the randomness of it all, the way it strikes one person one way, and another person a different way. For Mauril, this scourge has started with his speech. There is an awful irony in a politician first losing his ability to speak. Bulbar ALS, the kind he seems to have, typically moves faster, takes more at a time. His path will be difficult.
Mr. Bélanger is a month older than I am, right in the typical age range for this illness. He is at the peak of his career, also typical for people who get ALS. He is an active, outgoing man; a man with a family, children, grandchildren. He will need all of his strength, all of his family's strength, all of his community's strength as he deals with his diagnosis, and his disease. As an MP with 20 years in the house, he is entitled to, and will receive plenty of financial support, plenty of physical support. It's the emotional support which will be most important, for him, for his family, for his community.
There are only two pieces of advice I would give to Mauril Bélanger. The first would be a repeat of the advice my neurologist gave to me; if there is anything you want to do, do it sooner rather than later.
The second piece would be my own, albeit derived from something my brother Peter once said; you're going to live until you die, make sure that you live before you die. Take every opportunity to tell someone you love them. Grasp every chance you have to live your life. Find the joy, humour and happiness where ever you can. Live, with ALS.
Thursday, 3 December 2015
I'm Waiting
Every once in a while I get a morning where I get to forget about having ALS. This morning was like that. Katherine and I slept in until noon, or at least mostly slept in. We lay there for a while just holding each other, forgetting about time passing, forgetting about the world outside. We didn't say much; there wasn't much to say. Then, suddenly, it was over, that moment of peace, and the day began.
Shortly after noon Katherine announced that it was time to get up. As she often does, she fairly leapt out of bed, throwing herself into action. She told me once again to get up, then marched into the kitchen to get us coffee and breakfast. I tried to roll over, failed, and tried again. Then, ever so slowly, I managed to pull myself vertical as she arrived with coffee and breakfast. She sat in my wheelchair while I sat on the edge of the bed. We ate, and talked, then ate some more, and talked some more. Soon an hour had passed.
Our topics this morning ranged widely; the impact of money on life choices, career choices. We talked about our personalities, life approaches, and of course, ALS. We talked about my progession; it seems to have escalated since my UTI last summer. We talked about fast progression versus slow progression. There are plenty of times when I wish this disease would just get going and finish me off, so I could be done with it. Then there are the many, many other times when I am grateful for slow progression, for having the time to travel, to see friends and family, to do things "one last time".
Katherine made the most cogent comment of all. She said "You are waiting. You know what is coming and you are waiting." That's probably the worst part of this illness. I am waiting for the inevitable. When progression is slow, the wait, the dread, is longer. When progression is fast, I don't have time to worry about waiting. I don't have time for much of anything. I am waiting. Fortunately mornings like this, and Katherine, make that wait bearable.
Shortly after noon Katherine announced that it was time to get up. As she often does, she fairly leapt out of bed, throwing herself into action. She told me once again to get up, then marched into the kitchen to get us coffee and breakfast. I tried to roll over, failed, and tried again. Then, ever so slowly, I managed to pull myself vertical as she arrived with coffee and breakfast. She sat in my wheelchair while I sat on the edge of the bed. We ate, and talked, then ate some more, and talked some more. Soon an hour had passed.
Our topics this morning ranged widely; the impact of money on life choices, career choices. We talked about our personalities, life approaches, and of course, ALS. We talked about my progession; it seems to have escalated since my UTI last summer. We talked about fast progression versus slow progression. There are plenty of times when I wish this disease would just get going and finish me off, so I could be done with it. Then there are the many, many other times when I am grateful for slow progression, for having the time to travel, to see friends and family, to do things "one last time".
Katherine made the most cogent comment of all. She said "You are waiting. You know what is coming and you are waiting." That's probably the worst part of this illness. I am waiting for the inevitable. When progression is slow, the wait, the dread, is longer. When progression is fast, I don't have time to worry about waiting. I don't have time for much of anything. I am waiting. Fortunately mornings like this, and Katherine, make that wait bearable.
Wednesday, 2 December 2015
I Can't Pick Up My Left Leg
"Pick up your feet!" I can still hear my Dad saying that to me. I can remember as a kid, walking along with him, my spirit downbeat because we were headed out to participate in some chore I wanted no part of, my feet shuffling along, kicking at stones. If I was really slowing him down, it would be "Pick up your feet, God dammit!" The irony is now I cannot pick up my feet at all. I can't walk.
The irony extends even further. I seem to have lost enough strength in my left arm that I can no longer pick up my left leg, at least not consistently. The last few times I have tried, especially while seated in my wheelchair, I have been unable to complete the task. My arm just couldn't pick up my left foot. In other words, I can't pick up my feet. Sorry, Dad.
As noted, this new challenge occurs pretty much exclusively when I am in my wheelchair. When I am sitting on the bed, I can use my body and the edge of the bed to slide my legs half the way up. When I am on the couch, the lift is less of a distance. My wheelchair seems to be the perfect combination of height and limited sideways shift to require that I do the full lift with my arms, using whatever strength I have.
This is highly problematic for putting on shoes, or socks. This is highly problematic for positioning my feet after I transfer from the toilet, a bed, or anything else for that matter, when I end up in my wheelchair with my feet on the floor instead of on the foot pads. It makes sense that it would happen to my left arm first; it is the weaker side, the side where ALS seems to hit first.
This is not the end of life as I know it. It is just another change. There are work-arounds for this. I can use a "foot strap", a strap that I put at the bottom of my foot, allowing both arms to be part of the lifting process. I can ask for help; Katherine and my Home Care Aides are already on this. Or I can just go without shoes. After all, I'm in a wheelchair. My feet don't touch ground all that often.
The irony extends even further. I seem to have lost enough strength in my left arm that I can no longer pick up my left leg, at least not consistently. The last few times I have tried, especially while seated in my wheelchair, I have been unable to complete the task. My arm just couldn't pick up my left foot. In other words, I can't pick up my feet. Sorry, Dad.
As noted, this new challenge occurs pretty much exclusively when I am in my wheelchair. When I am sitting on the bed, I can use my body and the edge of the bed to slide my legs half the way up. When I am on the couch, the lift is less of a distance. My wheelchair seems to be the perfect combination of height and limited sideways shift to require that I do the full lift with my arms, using whatever strength I have.
This is highly problematic for putting on shoes, or socks. This is highly problematic for positioning my feet after I transfer from the toilet, a bed, or anything else for that matter, when I end up in my wheelchair with my feet on the floor instead of on the foot pads. It makes sense that it would happen to my left arm first; it is the weaker side, the side where ALS seems to hit first.
This is not the end of life as I know it. It is just another change. There are work-arounds for this. I can use a "foot strap", a strap that I put at the bottom of my foot, allowing both arms to be part of the lifting process. I can ask for help; Katherine and my Home Care Aides are already on this. Or I can just go without shoes. After all, I'm in a wheelchair. My feet don't touch ground all that often.
Tuesday, 1 December 2015
Waking Up Is Hard To Do
This morning was fairly typical. I woke up first at around 10:00 AM. I rolled over to look at the clock, the effort of which caused me to need some rest. I closed my eyes for a minute and it was 11:30 AM. I was still exhausted; that's how I start every day. My arms ache, my legs are dead, sitting up takes all the energy I have for a morning. Getting dressed leaves me breathless and done.
In the midst of this I thought of Neil Sedaka and his 1962 hit, "Breaking Up Is Hard To Do". So I did this, sung to that famous tune. Please forgive me. Punctuate as you wish. I can come up with additional verses if needed.
"Waking Up Is Hard To Do"
Do do do
Down dooby doo down down
Comma, comma, down dooby doo down down
Comma, comma, down dooby doo down down
Waking up is hard to do.
Don't take my legs away from me
Don't you leave my arms in misery
I'm exhausted and I am blue
Cause waking up is hard to do
Remember when my legs could stay upright
And my arms could hold a pillow tight
Think of all that they've been through
Now waking up is hard to do
They say that waking up is hard to do
Now I know
I know that it's true
Don't say that this is the end
Instead of waking up I really want to go to sleep again
I beg of you don't say goodbye
Can't we give my legs another try?
Come on, arms, let's start anew
Cause waking up is hard to do
(They say that waking up is hard to do)
Now I know
I know that it's true
(Don't say that this is the end)
Instead of waking up I really want to go to sleep again
I beg of you don't say goodbye
My body really doesn't want to die
Come on, breathe and I'll get through
Cause waking up is hard to do
(Down dooby doo down down)
Comma, comma, down dooby doo down down
Comma, comma, down dooby doo down down
Comma, comma, down dooby doo down down
Comma, comma, down dooby doo down
In the midst of this I thought of Neil Sedaka and his 1962 hit, "Breaking Up Is Hard To Do". So I did this, sung to that famous tune. Please forgive me. Punctuate as you wish. I can come up with additional verses if needed.
"Waking Up Is Hard To Do"
Do do do
Down dooby doo down down
Comma, comma, down dooby doo down down
Comma, comma, down dooby doo down down
Waking up is hard to do.
Don't take my legs away from me
Don't you leave my arms in misery
I'm exhausted and I am blue
Cause waking up is hard to do
Remember when my legs could stay upright
And my arms could hold a pillow tight
Think of all that they've been through
Now waking up is hard to do
They say that waking up is hard to do
Now I know
I know that it's true
Don't say that this is the end
Instead of waking up I really want to go to sleep again
I beg of you don't say goodbye
Can't we give my legs another try?
Come on, arms, let's start anew
Cause waking up is hard to do
(They say that waking up is hard to do)
Now I know
I know that it's true
(Don't say that this is the end)
Instead of waking up I really want to go to sleep again
I beg of you don't say goodbye
My body really doesn't want to die
Come on, breathe and I'll get through
Cause waking up is hard to do
(Down dooby doo down down)
Comma, comma, down dooby doo down down
Comma, comma, down dooby doo down down
Comma, comma, down dooby doo down down
Comma, comma, down dooby doo down
Monday, 30 November 2015
I'm Losing My Arms
For some months now my left arm has been aching, a steady kind of pain from muscles overworked. It's consistent, it's persistent. Every morning I wake up and the muscles in my biceps and upper arm hurt, sometimes bad enough that Tylenol is my first meal of the day. These muscles hurt because they are getting weaker while I still demand full utility of them. I'm working them too hard.
Up until now my right arm has been spared this annoyance. It might hurt now and again, particularly after a very busy day. I thought this was the case a couple of days ago, when I woke up to discover the same pain, only at a lower level, in my right bicep. Then I woke up yesterday with the same pain, and today with the same pain. It seems a corner has been turned, once again. It seems that both of my arms are now weak enough that they hurt from simple daily usage. I'm getting weaker.
This is no surprise. My arms started showing initial signs of difficulty a couple of years ago. The progression was very slow at first, almost imperceptible. I was really the only one who could see it. When I talked to the neurologist about it, he said he couldn't measure it, but if I felt it, it was probably happening. He also said that my arms would likely go the same way my legs did, with the left side going faster than the right, then both sides, slowly at first then rapidly as I got further into the progression. So far the neurologist has been correct.
These days my arms are barely strong enough to lift my body weight. It's 250 pounds, not insubstantial, but a lift from my wheelchair to transfer into the truck, or onto the toilet, or into bed, has always been possible. My arms, especially my left arm, are approaching the point where that won't work anymore; I won't be able to make the transfer.
Oddly enough in all of this, it is my upper arms losing strength the fastest. My lower arms seem to be doing okay, although it's really hard to tell since they work as a team. My hands still seem fairly strong, except on really bad days. I can still feed myself, open a twist top bottle of beer, fold laundry. Sure, I get tired. That's just ALS. But I am definitely losing my upper body strength fairly quickly these days. It's what happens.
Up until now my right arm has been spared this annoyance. It might hurt now and again, particularly after a very busy day. I thought this was the case a couple of days ago, when I woke up to discover the same pain, only at a lower level, in my right bicep. Then I woke up yesterday with the same pain, and today with the same pain. It seems a corner has been turned, once again. It seems that both of my arms are now weak enough that they hurt from simple daily usage. I'm getting weaker.
This is no surprise. My arms started showing initial signs of difficulty a couple of years ago. The progression was very slow at first, almost imperceptible. I was really the only one who could see it. When I talked to the neurologist about it, he said he couldn't measure it, but if I felt it, it was probably happening. He also said that my arms would likely go the same way my legs did, with the left side going faster than the right, then both sides, slowly at first then rapidly as I got further into the progression. So far the neurologist has been correct.
These days my arms are barely strong enough to lift my body weight. It's 250 pounds, not insubstantial, but a lift from my wheelchair to transfer into the truck, or onto the toilet, or into bed, has always been possible. My arms, especially my left arm, are approaching the point where that won't work anymore; I won't be able to make the transfer.
Oddly enough in all of this, it is my upper arms losing strength the fastest. My lower arms seem to be doing okay, although it's really hard to tell since they work as a team. My hands still seem fairly strong, except on really bad days. I can still feed myself, open a twist top bottle of beer, fold laundry. Sure, I get tired. That's just ALS. But I am definitely losing my upper body strength fairly quickly these days. It's what happens.
Sunday, 29 November 2015
Days Like This
It's Grey Cup day today; the game is in Winnipeg, played by the Edmonton Eskimos and the Ottawa Red-Blacks. It's a Canadian Football Championship! It's also the most Canadian reason you can get for a party. One event, one Sunday afternoon late in November, every year. East meets West.
For the last three years, we've celebrated this day at Wavehill, the 5,000 SF cabin in the foothills of the Rockies which we rented for the weekend. We would arrive mostly on Friday night, and stay mostly until Monday morning. Usually the Monday morning crowd was a bit light. Most stayed for the Grey Cup and went home afterwards.
The financial makeup of our little group of friends has changed. I am no longer working, so cannot underwrite the affair. Mike is away and cannot come; his new job has taken him to Kamloops. There is a general downturn in the Calgary economy. Some have lost their jobs, others are worried, counting their pennies. So this year the Grey Cup party is here at my apartment.
Dan will arrive soon to start his slow baked ribs; Anisa will be with him to help. Kate will arrive at around 3:00 PM, as will many others. We will gather together, cook, eat, drink wine and generally have a good time. The game starts at 4:00 PM, theoretically, more likely at 4:30 PM after all the pre-game nonsense. We'll watch, we'll eat some more, we'll watch the second half, we'll drink some more. Then, after the game, we will continue our four year tradition, watching the Princess Bride together. Some will stay, some will go. It will be a good time.
Days like this are important to me, even crucial to my well being. They take me away from the struggle of ALS, from the pain in my arms, legs, back and neck. A day like today helps me focus on my friends, on enjoying their laughter, on sharing my life with them. A day like today is a break from the work, the effort of living. It will be social, like I am. We will do what all social groups do when they gather. We will eat, we will drink, we will talk, we will make merry. That's what takes my mind off of life in general.
For the last three years, we've celebrated this day at Wavehill, the 5,000 SF cabin in the foothills of the Rockies which we rented for the weekend. We would arrive mostly on Friday night, and stay mostly until Monday morning. Usually the Monday morning crowd was a bit light. Most stayed for the Grey Cup and went home afterwards.
The financial makeup of our little group of friends has changed. I am no longer working, so cannot underwrite the affair. Mike is away and cannot come; his new job has taken him to Kamloops. There is a general downturn in the Calgary economy. Some have lost their jobs, others are worried, counting their pennies. So this year the Grey Cup party is here at my apartment.
Dan will arrive soon to start his slow baked ribs; Anisa will be with him to help. Kate will arrive at around 3:00 PM, as will many others. We will gather together, cook, eat, drink wine and generally have a good time. The game starts at 4:00 PM, theoretically, more likely at 4:30 PM after all the pre-game nonsense. We'll watch, we'll eat some more, we'll watch the second half, we'll drink some more. Then, after the game, we will continue our four year tradition, watching the Princess Bride together. Some will stay, some will go. It will be a good time.
Days like this are important to me, even crucial to my well being. They take me away from the struggle of ALS, from the pain in my arms, legs, back and neck. A day like today helps me focus on my friends, on enjoying their laughter, on sharing my life with them. A day like today is a break from the work, the effort of living. It will be social, like I am. We will do what all social groups do when they gather. We will eat, we will drink, we will talk, we will make merry. That's what takes my mind off of life in general.
Saturday, 28 November 2015
Writing for Dollars
I didn't shoot a deer yesterday. It doesn't matter; I had a terrific day out in the woods and fields, exploring, looking for game. We saw lots after sunset, but none where we were hunting. This is good for the deer, although it means I don't have a freezer full of venison. It would have help, having a freezer full of meat.
I'm on AISH now, the Alberta Assured Income for the Severely Handicapped. The name of this supplemental income is enough to let you know how I am doing. I am severely handicapped, and getting worse. It's kind of depressing, to have used all of my own money, run up my credit cards, and now to have to depend on the government for even more money and support. On the other hand, nobody plans for ALS; nobody plans for living longer than a reasonable prognosis; nobody plans for the expenses of this illness.
This morning Katherine and I were discussing how I might make a bit of extra money. AISH allows me to make up to $800 a month in income without impacting my benefits. Of course if I could work, I would be doing so already. My energy level precludes normal employment. My body precludes anything even vaguely physical. These days I can hardly get into my truck, so UBER is probably a bad idea. Katherine thinks I should see if I can make some money with my writing.
Over the years, I've written a number of commercial pieces; magazine articles, speeches, presentations, that sort of thing. I've never made a real push of it; it was just another part of my work. My blog, my poems, my other articles have all been written for myself, a kind of release from the stress of my life. I've never seen them as publishable articles.
The truth is that right now I lack the motivation to pursue this, and the confidence to feel that it could be in anyway successful. I just don't see why people would be interested in what I have to say. I don't know why people would want to pay to see what I write. Some of them do, sometimes. Those instances are few and far between. I just don't see how I could make a consistent income from it, or even an intermittent one. In this area, I don't believe in myself. I don't need the rejection. Silly, I know. But true nonetheless.
I'm on AISH now, the Alberta Assured Income for the Severely Handicapped. The name of this supplemental income is enough to let you know how I am doing. I am severely handicapped, and getting worse. It's kind of depressing, to have used all of my own money, run up my credit cards, and now to have to depend on the government for even more money and support. On the other hand, nobody plans for ALS; nobody plans for living longer than a reasonable prognosis; nobody plans for the expenses of this illness.
This morning Katherine and I were discussing how I might make a bit of extra money. AISH allows me to make up to $800 a month in income without impacting my benefits. Of course if I could work, I would be doing so already. My energy level precludes normal employment. My body precludes anything even vaguely physical. These days I can hardly get into my truck, so UBER is probably a bad idea. Katherine thinks I should see if I can make some money with my writing.
Over the years, I've written a number of commercial pieces; magazine articles, speeches, presentations, that sort of thing. I've never made a real push of it; it was just another part of my work. My blog, my poems, my other articles have all been written for myself, a kind of release from the stress of my life. I've never seen them as publishable articles.
The truth is that right now I lack the motivation to pursue this, and the confidence to feel that it could be in anyway successful. I just don't see why people would be interested in what I have to say. I don't know why people would want to pay to see what I write. Some of them do, sometimes. Those instances are few and far between. I just don't see how I could make a consistent income from it, or even an intermittent one. In this area, I don't believe in myself. I don't need the rejection. Silly, I know. But true nonetheless.
Friday, 27 November 2015
Going Hunting
I'm excited. Things are moving quickly this morning. I am heading out hunting in a few minutes, heading out in my truck with my gear and guns, heading up into rural Alberta, along the rolling foothills of the Rockies, where the forests begin and the plains end. There I hope to find a willing white-tail deer who will present himself as a sacrifice to my need to once again feel like I can fend for myself, take care of myself in the bush, feed my family with the gain from my efforts.
The plan is for me to head up to my buddy Thor's place in Caroline. He will be my legs and heavy lifting for the day; he knows what he is getting into. From his place, we will head off into a local ranch where the landowner has given us permission to hunt. This is no flatland exploration; I'll definitely need the 4X4 in my truck today. We'll wander about the countryside on whatever roads there are; we'll make a few if needed. We'll see what we can find; we'll shoot it if we can.
This will probably be the last time in my life I get to do this, the last time I can go hunting. This year's hunting season ends on Monday. Next year is too far away for me to see, but my suspicions are that I will not be in good shape for any sort of expedition like this, if I am here at all. This makes today all the more special, all the more meaningful.
There are a lot of "last time" events with ALS. Most of them have crept up on me, taking me not by surprise so much as unawares. I knew it was happening. I just didn't know that this was it. I had a suspicion, yet I would keep trying, keep going until I had completely exhausted the possibilities. Today is a clear and certain break. The laws around hunting are very clear. Unless I get out somehow on Monday, this will be it, the very last time.
Oddly enough I don't feel bad about this. In fact I am excited, excited about getting out into the woods and fields, excited about getting my guns and gear ready, excited about the drive up there. There is no sadness in this, at least not yet. For today, I am going hunting. That is enough excitement to keep me going. It's gonna be a fun day.
The plan is for me to head up to my buddy Thor's place in Caroline. He will be my legs and heavy lifting for the day; he knows what he is getting into. From his place, we will head off into a local ranch where the landowner has given us permission to hunt. This is no flatland exploration; I'll definitely need the 4X4 in my truck today. We'll wander about the countryside on whatever roads there are; we'll make a few if needed. We'll see what we can find; we'll shoot it if we can.
This will probably be the last time in my life I get to do this, the last time I can go hunting. This year's hunting season ends on Monday. Next year is too far away for me to see, but my suspicions are that I will not be in good shape for any sort of expedition like this, if I am here at all. This makes today all the more special, all the more meaningful.
There are a lot of "last time" events with ALS. Most of them have crept up on me, taking me not by surprise so much as unawares. I knew it was happening. I just didn't know that this was it. I had a suspicion, yet I would keep trying, keep going until I had completely exhausted the possibilities. Today is a clear and certain break. The laws around hunting are very clear. Unless I get out somehow on Monday, this will be it, the very last time.
Oddly enough I don't feel bad about this. In fact I am excited, excited about getting out into the woods and fields, excited about getting my guns and gear ready, excited about the drive up there. There is no sadness in this, at least not yet. For today, I am going hunting. That is enough excitement to keep me going. It's gonna be a fun day.
Thursday, 26 November 2015
She Makes Me Smile
Katherine makes me laugh... a lot, often. She makes me smile with her gestures, her walk, her body language, her motion. She says things that just make me laugh. Then there are the the things she does, the little personal oddities which make her a true character. She is just a fun person.
This morning was a great example. I was taking it easy, laying in bed, getting some extra rest when she walked through the door. For starters, she had walked the four blocks in -10 C temperatures rather than wait or ask for me to pick her up. She comes in the door, sees that I am still in bed, and says "Get up." It's an order, but not really. It's not even a demand. It's more of a strong suggestion. I said I was loving my extra rest to which she replied "It's time to get up."
She walked into the bedroom, tidying up, putting things away as she went. Then she said the truly magical words. "Get up. I make you coffee. That's what you want, right?" She hit the perfect note with her tone, a plea for me to get up and a reward for action on my part. Coffee doesn't just mean coffee. It means breakfast. I said I would get up and she disappeared into the kitchen.
When I did get up, I heard her rustling about in the living room. I knew what she was doing. She was re-folding the sheets I folded last night. My folding efforts, especially with the fitted sheets, were not up to her standards. I laughed when I saw her doing this. I knew when I folded them last night that she would redo them this morning. She laughed too. We both new how silly this was. We both know how important it is to her to have them folded "right".
Then, as I was getting dressed, she got busy in the kitchen, making coffee and preparing food. I noticed from the bedroom that she was doing something with the last ounce of rum I had left in a bottle in the kitchen. She wanted to dispose of the bottle, but had to do something with that remnant first. So, rather than waste it, she poured a bit into each coffee cup, added a bit of eggnog, and that was my morning coffee. Once again, she made me laugh. It's just her. She's funny.
I need laughter in my life. There are a lot of things which are not funny at all these days. There is the whole reason my sheets needed cleaning. That's not fun, or funny. There is my fast failing ability to get into my truck, to reach into my cupboards, to hold up a heavy glass. These things are not funny.
Yet Katherine, in the midst of all these sad things, always seems to make me smile. That's what I need.
This morning was a great example. I was taking it easy, laying in bed, getting some extra rest when she walked through the door. For starters, she had walked the four blocks in -10 C temperatures rather than wait or ask for me to pick her up. She comes in the door, sees that I am still in bed, and says "Get up." It's an order, but not really. It's not even a demand. It's more of a strong suggestion. I said I was loving my extra rest to which she replied "It's time to get up."
She walked into the bedroom, tidying up, putting things away as she went. Then she said the truly magical words. "Get up. I make you coffee. That's what you want, right?" She hit the perfect note with her tone, a plea for me to get up and a reward for action on my part. Coffee doesn't just mean coffee. It means breakfast. I said I would get up and she disappeared into the kitchen.
When I did get up, I heard her rustling about in the living room. I knew what she was doing. She was re-folding the sheets I folded last night. My folding efforts, especially with the fitted sheets, were not up to her standards. I laughed when I saw her doing this. I knew when I folded them last night that she would redo them this morning. She laughed too. We both new how silly this was. We both know how important it is to her to have them folded "right".
Then, as I was getting dressed, she got busy in the kitchen, making coffee and preparing food. I noticed from the bedroom that she was doing something with the last ounce of rum I had left in a bottle in the kitchen. She wanted to dispose of the bottle, but had to do something with that remnant first. So, rather than waste it, she poured a bit into each coffee cup, added a bit of eggnog, and that was my morning coffee. Once again, she made me laugh. It's just her. She's funny.
I need laughter in my life. There are a lot of things which are not funny at all these days. There is the whole reason my sheets needed cleaning. That's not fun, or funny. There is my fast failing ability to get into my truck, to reach into my cupboards, to hold up a heavy glass. These things are not funny.
Yet Katherine, in the midst of all these sad things, always seems to make me smile. That's what I need.
Wednesday, 25 November 2015
Pun Intended
It's not just having ALS that makes my life difficult. It's having ALS and being in a wheelchair. Of course the wheelchair thing happens to many, if not all, pALS. We all end up immobilized by this illness. Some of us, however, end up in the chair sooner than others. Such is the case for me. The whole wheelchair thing compounds what would otherwise be simple problems for most people.
These last few days, probably since last Friday when I was feeling so bad, I've been struggling with something going hyperactive in my lower stomach. The burble and grumble of gas has been profound. The explosive reaction when on the toilet, and sometimes when not on the toilet, has been loud enough to make one think an accident had occurred on the street below. Unfortunately this has been accompanied by the expected rather loose stools, my daily visit to the bathroom becoming a liquid mess at times.
For most people, this would simply be an inconvenience. You go to the bathroom and blast that gas out. You go again as called upon, relieving the pressure on your system. You wipe your own ass. For me, going to the bathroom is a major excursion, an wearing exercise in heavy lifting, hard pushing, cleaning and transfer. Wiping my own ass is becoming a challenge. So I use the bathroom as best I can in the morning; I try to avoid repeated visits.
Yesterday I had a really tough morning, so tough the Katherine had to clean my backside up afterwards. In addition to the typical tough toilet time, I had a great deal of difficulty finishing off and cleaning myself. My lower bowel seemed to think that it should continue with its efforts even though I was no longer on the toilet. I was, once again, a shitty mess. Katherine can only be considered saintly in her efforts to deal with both my body and my emotions.
Unfortunately I had had some similar problems the night before; gas sufficiently active that the bedsheets needed changing. Katherine pulled them off and put on clean sheets. Then, last night, again, the very same problem occurred again. This morning it was the Home Care Aide who changed the sheets. Two nights; two sets of sheets. This is why I have several sets of sheets. I have a lot of laundry to do.
All of this lower end stomach problem is a compound effect. I have trouble with toileting because I am in a wheelchair. Thanks to ALS, I have trouble purging my bowels because my core muscles are failing. I have trouble stopping the evacuation because those same muscles which cannot push fail to engage the completion process properly. I have trouble cleaning myself because sometimes I cannot reach in while seated, nor can I stand to clean. And, as the old saying goes, you can never trust a fart after you reach 50.
Some days are just a mess. Yesterday was. Today started that way. Let's hope that today, it all comes out okay in the end. Pun intended.
These last few days, probably since last Friday when I was feeling so bad, I've been struggling with something going hyperactive in my lower stomach. The burble and grumble of gas has been profound. The explosive reaction when on the toilet, and sometimes when not on the toilet, has been loud enough to make one think an accident had occurred on the street below. Unfortunately this has been accompanied by the expected rather loose stools, my daily visit to the bathroom becoming a liquid mess at times.
For most people, this would simply be an inconvenience. You go to the bathroom and blast that gas out. You go again as called upon, relieving the pressure on your system. You wipe your own ass. For me, going to the bathroom is a major excursion, an wearing exercise in heavy lifting, hard pushing, cleaning and transfer. Wiping my own ass is becoming a challenge. So I use the bathroom as best I can in the morning; I try to avoid repeated visits.
Yesterday I had a really tough morning, so tough the Katherine had to clean my backside up afterwards. In addition to the typical tough toilet time, I had a great deal of difficulty finishing off and cleaning myself. My lower bowel seemed to think that it should continue with its efforts even though I was no longer on the toilet. I was, once again, a shitty mess. Katherine can only be considered saintly in her efforts to deal with both my body and my emotions.
Unfortunately I had had some similar problems the night before; gas sufficiently active that the bedsheets needed changing. Katherine pulled them off and put on clean sheets. Then, last night, again, the very same problem occurred again. This morning it was the Home Care Aide who changed the sheets. Two nights; two sets of sheets. This is why I have several sets of sheets. I have a lot of laundry to do.
All of this lower end stomach problem is a compound effect. I have trouble with toileting because I am in a wheelchair. Thanks to ALS, I have trouble purging my bowels because my core muscles are failing. I have trouble stopping the evacuation because those same muscles which cannot push fail to engage the completion process properly. I have trouble cleaning myself because sometimes I cannot reach in while seated, nor can I stand to clean. And, as the old saying goes, you can never trust a fart after you reach 50.
Some days are just a mess. Yesterday was. Today started that way. Let's hope that today, it all comes out okay in the end. Pun intended.
Tuesday, 24 November 2015
Announcement Exhaustion
Way back when I was first diagnosed with ALS, I was very interested in all the research. I followed drug studies very closely, watching each development followed by each disappointment. I wanted to find something, anything, which could offer me even a smidgen of hope. As time went on, it became more and more difficult to face the constant disappointment, the constant reference to mouse models or future developments or potential treatments.
So I gave up. I don't bother with most of this stuff anymore. I don't read the research articles, the news stories, the Internet announcements, except in a few cases where the headline is well enough crafted to catch my attention. They are out there, in a constant stream since the Ice Bucket Challenge, as if the ALS movement has to justify its success with this wildly successful viral fundraising campaign. These announcements and articles are all geared towards showing success and value for money, showing how the IBC really has made a difference.
There is no doubt in my mind that the IBC did make a difference, that money which would never have been invested otherwise has been put to good use in funding research, medical studies, drug evaluations. I know this to be true. I also know that I still see the words "possible", "potential" and "future treatments" in almost every article and press release. It's frustrating, exhausting to see all this work with so little immediate impact.
Everything with this illness takes a very long time. It is such a complicated disease. My suspicion is that once ALS has been conquered there will be a great many neurological diseases dealt with in quick succession. After all, it's all about the neurons. I'm just getting tired of articles offering hope only to see it dashed in a veil of distant possibility.
I've decided I am not really going to pay attention until my doctor tells me one of these possibilities is now a reality, and I might get better because of it. Until then, I will let the medical professionals do the reading. After all, that's what they are supposed to do. I'm just the patient, nothing more.
So I gave up. I don't bother with most of this stuff anymore. I don't read the research articles, the news stories, the Internet announcements, except in a few cases where the headline is well enough crafted to catch my attention. They are out there, in a constant stream since the Ice Bucket Challenge, as if the ALS movement has to justify its success with this wildly successful viral fundraising campaign. These announcements and articles are all geared towards showing success and value for money, showing how the IBC really has made a difference.
There is no doubt in my mind that the IBC did make a difference, that money which would never have been invested otherwise has been put to good use in funding research, medical studies, drug evaluations. I know this to be true. I also know that I still see the words "possible", "potential" and "future treatments" in almost every article and press release. It's frustrating, exhausting to see all this work with so little immediate impact.
Everything with this illness takes a very long time. It is such a complicated disease. My suspicion is that once ALS has been conquered there will be a great many neurological diseases dealt with in quick succession. After all, it's all about the neurons. I'm just getting tired of articles offering hope only to see it dashed in a veil of distant possibility.
I've decided I am not really going to pay attention until my doctor tells me one of these possibilities is now a reality, and I might get better because of it. Until then, I will let the medical professionals do the reading. After all, that's what they are supposed to do. I'm just the patient, nothing more.
Monday, 23 November 2015
Ali Steventon - A Sudden Departure
What do you do when death becomes the norm, when you get used to seeing postings of people you know, some of whom you know personally, who died last night? Ali Steventon died last night. She had ALS. I met her online and we corresponded about ALS, also known as Motor Neuron Disease in her home of Adelaide, South Australia.
She passed away last night, yet I heard from her just a couple of days ago. This is how it often goes with ALS; you expect people will die, but they seem to go suddenly. It doesn't matter that they have been seriously ill for some time, a candidate for respiratory failure for many months. It still seems sudden. After all, I was just corresponding with her online a couple of days ago. There was no warning, no announcement of imminent demise, no shout out over the Internet. Like most of us with this disease, she just stopped breathing one night.
I'm in a strange sort of club. As one of my friends once said, it is "the kind of club people are dying to get out of." In life, nobody gets out alive. With ALS, that becomes all the more apparent. There is no graceful aging, no sunset of life. It's a curtain, a blackout curtain, that hovers above you for months then falls suddenly, closing the last act of your life before you have finished your soliloquy. Your life's monologue, your living dialogue, simply stops, seemingly without warning. This is the group I am in, these players on a stage where the play ends without warning, abruptly.
It will be like that for me to. Everyone will say "but he looked great." I will, nonetheless, depart suddenly, without warning, just as Ali did last night. When my time comes, there will be no advisory notice, no advance email prompting family and friends to rush to my bedside. I will simply go to sleep one night and fail to wake up the next morning.
For Ali, for me, for anyone with ALS, or for everyone in your life as far as death goes, don't wait for that last call, that last moment, that announcement that the curtain will fall. Be there before. Be here often. Listen to that last dialogue, even if it is not the last one. Those final words will be said in every life. Sometimes you get to hear them. Other times, like with Ali, like with me, you have to be ready for the sudden curtain fall.
She passed away last night, yet I heard from her just a couple of days ago. This is how it often goes with ALS; you expect people will die, but they seem to go suddenly. It doesn't matter that they have been seriously ill for some time, a candidate for respiratory failure for many months. It still seems sudden. After all, I was just corresponding with her online a couple of days ago. There was no warning, no announcement of imminent demise, no shout out over the Internet. Like most of us with this disease, she just stopped breathing one night.
I'm in a strange sort of club. As one of my friends once said, it is "the kind of club people are dying to get out of." In life, nobody gets out alive. With ALS, that becomes all the more apparent. There is no graceful aging, no sunset of life. It's a curtain, a blackout curtain, that hovers above you for months then falls suddenly, closing the last act of your life before you have finished your soliloquy. Your life's monologue, your living dialogue, simply stops, seemingly without warning. This is the group I am in, these players on a stage where the play ends without warning, abruptly.
It will be like that for me to. Everyone will say "but he looked great." I will, nonetheless, depart suddenly, without warning, just as Ali did last night. When my time comes, there will be no advisory notice, no advance email prompting family and friends to rush to my bedside. I will simply go to sleep one night and fail to wake up the next morning.
For Ali, for me, for anyone with ALS, or for everyone in your life as far as death goes, don't wait for that last call, that last moment, that announcement that the curtain will fall. Be there before. Be here often. Listen to that last dialogue, even if it is not the last one. Those final words will be said in every life. Sometimes you get to hear them. Other times, like with Ali, like with me, you have to be ready for the sudden curtain fall.
Sunday, 22 November 2015
Happy Anniversary To Me
Today is November 22nd. This is my ALS anniversary. Three years ago today I sat in a cold hospital room where a neurologist confirmed that I had an illness with no known cause, no viable treatments, and no cure, a disease where the outcome was always a debilitating, frustrating death, a disease which would steal my muscles, my strength, and ultimately my life. I can still remember that one piece of advice he gave me after confirming my diagnosis; "If there is anything you want to do, do it sooner rather than later."
Today it is three years from that day, three years from when I was given that awful news. Three years. Three years in which my body has changed dramatically, continually for the worse. Three years in which my life has changed dramatically, some changes for the better, most for the worse. Three years in which I was supposed to decline and ultimately die.
My life with ALS didn't start a simple three years ago. My first symptoms were almost two full years before diagnosis. At first I attributed things to getting older. The clumsiness, the easy exhaustion, the weakness; these were happening because I was in my mid-fifties. Or perhaps it was my weight; I was a lot heavier than I should be. Then I thought it was a back injury. I made every excuse I could until I was forced to seek medical attention. That's when I go the word, and an prognosis of 36 months or less.
That I am still here, still typing, still getting around, still breathing, is a testament to the vagaries of this illness, to my unwillingness to stop living life, to the failure of statistics when it comes to individual application. The average ALS patient dies within 36 months of diagnosis. Clearly I am not average. I've seen many in my cohort pass away already, many others who are much worse off than me. I've seen PALS diagnosed after me who died well before me. I'm still here; they are not.
Three years is a short amount of time to live and a long amount of time to die. I have more time to live yet. For that I am grateful. My body continues to die as I live; for this I am somewhat less than grateful. I planned for 36 months. I budgeted for 36 months. Now that I am here I am in no hurry to leave. At the same time I find only limited pleasure in remaining. Living with ALS is a tough ride.
I'm now in that next step in the scale. 80% of people with ALS are dead within five years. This does not mean I have two more years to go. It means there is an 80% likelihood that I will be dead 24 months from now. Personally I suspect it will be sooner than that. I'll be happy to see my 61st birthday this coming July. That's my next big anniversary.
Today it is three years from that day, three years from when I was given that awful news. Three years. Three years in which my body has changed dramatically, continually for the worse. Three years in which my life has changed dramatically, some changes for the better, most for the worse. Three years in which I was supposed to decline and ultimately die.
My life with ALS didn't start a simple three years ago. My first symptoms were almost two full years before diagnosis. At first I attributed things to getting older. The clumsiness, the easy exhaustion, the weakness; these were happening because I was in my mid-fifties. Or perhaps it was my weight; I was a lot heavier than I should be. Then I thought it was a back injury. I made every excuse I could until I was forced to seek medical attention. That's when I go the word, and an prognosis of 36 months or less.
That I am still here, still typing, still getting around, still breathing, is a testament to the vagaries of this illness, to my unwillingness to stop living life, to the failure of statistics when it comes to individual application. The average ALS patient dies within 36 months of diagnosis. Clearly I am not average. I've seen many in my cohort pass away already, many others who are much worse off than me. I've seen PALS diagnosed after me who died well before me. I'm still here; they are not.
Three years is a short amount of time to live and a long amount of time to die. I have more time to live yet. For that I am grateful. My body continues to die as I live; for this I am somewhat less than grateful. I planned for 36 months. I budgeted for 36 months. Now that I am here I am in no hurry to leave. At the same time I find only limited pleasure in remaining. Living with ALS is a tough ride.
I'm now in that next step in the scale. 80% of people with ALS are dead within five years. This does not mean I have two more years to go. It means there is an 80% likelihood that I will be dead 24 months from now. Personally I suspect it will be sooner than that. I'll be happy to see my 61st birthday this coming July. That's my next big anniversary.
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