In roughly a half hour, I shall go back in time. Not go back as in time travel. Go back as in revert to my manual wheelchair. The wheelchair mechanics will be picking mine up in order to take it into the shop and do repairs. While my power wheelchair is gone, I will be using my manual chair, something I have not done in quite some time, sufficiently far in the past that I am no longer sure I have the strength to move it.
Fortunately my friend, Anne, will be coming over this afternoon and evening to keep me company. This means if I discover I cannot move myself about, as I expect will be the case, then, at a minimum, Anne will be here to push me around inside my apartment. No worries; I am used to being pushed around these days. Getting pushed around used to be normal until I got the power chair.
The plan is for my wheelchair to be away from me for exactly 24 hours, getting picked up at 3:00 PM today and returned at 3:00 PM tomorrow. It's a good plan, as I have nothing on the agenda for this evening or for tomorrow morning. In fact I could just go to bed and stay there for the next 24 hours. After all, I will already be sleeping for half of that time.
Still, all in all, it seem appropriate that I should at least stay up this evening. Tomorrow morning will be a busy day, with a shower and exercises in my schedule. On my busy mornings I am often not finally ready to get into my wheelchair until about 1:00 PM. If I just stay in bed tomorrow morning, it will simply mean I get a two hour nap, something I can always enjoy.
I'll try staying up this afternoon and evening. If it becomes tiring or difficult, I will ask Anne to help me get onto my bed. If tomorrow goes as normal, I will also stay on my bed. At least I have a plan; let's see what actually happens.
Thursday, 31 May 2018
Wednesday, 30 May 2018
Such A Production (Language Warning)
"I hate this fucking disease!"
You might think that comment is a matter of common standing, a constancy of expression, a Rock of Gibralter clearly seen and stated. Well, it is. On top of that it is exactly what I said to my HCA, Kabira, just a few minutes ago. I was angry. I lacked the strength to plug in the adapter for my laptop,.
The laptop adapter was unplugged as I had to remove it, along with all the other detritus, from my table, in order to lay out the pretty new springtime tablecloth I picked up yesterday while shopping. Plugs, another thing I lack the ability to do, another thing done for me by my HCA, Kabira.
This is not the whole of it. My first struggle was even finding one in the stack of pretty tablecloths over at HomeSense. The issue was not selection. It was the strength and reach required to sort through the massive selection to find what I wanted, the energy needed to move dozens of tablecloths to get to just that one, the right one. It wore out my arms.
Fortunately getting it to the cashier was a simple task, first with me keeping the wheelchair in the elevated position, then resting my arms by slowly browsing my way to the checkout, then dropping my purchase from an elevated position rather than trying to lift it up from a lowered position. Only after checking out and paying did I finally return my chair to its fully closed and locked position.
After getting my pretty new tablecloth home, I left it on the table for the night. Then this morning I asked Samhar, my morning HCA, to turn my kitchen table 180 degrees, so I could hide the massive gouges from my wheelchair. She did. After she left, and after a much needed nap of 3 hours, I started the slow exercise of clearing the table, including removing my laptop.
Then Kabira came. She had the new tablecloth out and on the table in a snap, however not without reminding me that this was not in the care plan. So far the only things back on the table are my water jug, my drinking mug, my laptop, and my extension keyboard. Oh, and that stupid adapter, or at least the cable from the outlet to computer.
I really do hate this fucking disease. Such a production for something so simple.
You might think that comment is a matter of common standing, a constancy of expression, a Rock of Gibralter clearly seen and stated. Well, it is. On top of that it is exactly what I said to my HCA, Kabira, just a few minutes ago. I was angry. I lacked the strength to plug in the adapter for my laptop,.
The laptop adapter was unplugged as I had to remove it, along with all the other detritus, from my table, in order to lay out the pretty new springtime tablecloth I picked up yesterday while shopping. Plugs, another thing I lack the ability to do, another thing done for me by my HCA, Kabira.
This is not the whole of it. My first struggle was even finding one in the stack of pretty tablecloths over at HomeSense. The issue was not selection. It was the strength and reach required to sort through the massive selection to find what I wanted, the energy needed to move dozens of tablecloths to get to just that one, the right one. It wore out my arms.
Fortunately getting it to the cashier was a simple task, first with me keeping the wheelchair in the elevated position, then resting my arms by slowly browsing my way to the checkout, then dropping my purchase from an elevated position rather than trying to lift it up from a lowered position. Only after checking out and paying did I finally return my chair to its fully closed and locked position.
After getting my pretty new tablecloth home, I left it on the table for the night. Then this morning I asked Samhar, my morning HCA, to turn my kitchen table 180 degrees, so I could hide the massive gouges from my wheelchair. She did. After she left, and after a much needed nap of 3 hours, I started the slow exercise of clearing the table, including removing my laptop.
Then Kabira came. She had the new tablecloth out and on the table in a snap, however not without reminding me that this was not in the care plan. So far the only things back on the table are my water jug, my drinking mug, my laptop, and my extension keyboard. Oh, and that stupid adapter, or at least the cable from the outlet to computer.
I really do hate this fucking disease. Such a production for something so simple.
Tuesday, 29 May 2018
Back To Sleep
I'm not going to write much today. I feel a lot like sleeping today, which is about all I have done other than eat a half sandwich and drink a half cup of coffee. When getting me up this morning, Kathy, my HCA, suggested I just go back to bed, wearing my clothes so I could get up if I eventually felt like it. I pointed out that I can sleep in my power wheelchair, so that's what I have been doing.
The tiredness has a few places of origin. There's plain ALS tired. There's the lingering effects of the sleeping pill I took last night. There's the exhaustion caused by the continuing pain in my left arm and shoulder. And there is depression making me just want to sleep. So I am giving in to it all.
I'll try to stay up for a bit now, but not for long. I'm already feeling the drowse coming on. Back to sleep.
The tiredness has a few places of origin. There's plain ALS tired. There's the lingering effects of the sleeping pill I took last night. There's the exhaustion caused by the continuing pain in my left arm and shoulder. And there is depression making me just want to sleep. So I am giving in to it all.
I'll try to stay up for a bit now, but not for long. I'm already feeling the drowse coming on. Back to sleep.
Monday, 28 May 2018
I Need A Live In, Soon
Last Friday, in my frustrated and continuing effort to find a live in HCA, I took to emailing as many of the training colleges as possible in Alberta, asknig the HCA training coordinators if they might help me in my search. Of the 12 or so emails I sent out, I recieved one response saying they would put my email on their Job Board, a call from an agency associated with one of the training schools looking to see if I needed assistance from an agency, like what I get now from CBI, and one lengthy, interesting phone call from an actual HCA Training Program coordinator who was very helpful.
That's it. So far 1 email and 2 phone responses for 12 directed emails.
There are a couple of conclusions I could draw from this. First, perhaps it's a bit too early to expect a response. After all, program coordinators are busy people. They have a great many things to do in their day, including delivering training classes. I should be more patient, waiting a few days before taking this thought any further. This is my default stance.
The next thought I had was that there is so much demand for HCA's of all stripes; live-in, live-out, hospitals, agencies, part-time, full-time. Placing students in locations preferable to a live-in situation may be at the top of their list. My offering might not even be accepted by any of their students. That would explain the number of training institutions and companies offering HCA programs.
The third, and perhaps most distressing possibiity is that people don't want to do the live-in part at all, so those delivering training to the new HCA's just don't pass it on. I am assured there are people out there who want the live-in situation; I'm just not finding them. It concerns me. If the pool of candidates is so small, I may not have a lot of choice come the end of the day.
I really want to get this done with. The search is tiring, on David, Anne and myself. I need a live-in. Soon.
That's it. So far 1 email and 2 phone responses for 12 directed emails.
There are a couple of conclusions I could draw from this. First, perhaps it's a bit too early to expect a response. After all, program coordinators are busy people. They have a great many things to do in their day, including delivering training classes. I should be more patient, waiting a few days before taking this thought any further. This is my default stance.
The next thought I had was that there is so much demand for HCA's of all stripes; live-in, live-out, hospitals, agencies, part-time, full-time. Placing students in locations preferable to a live-in situation may be at the top of their list. My offering might not even be accepted by any of their students. That would explain the number of training institutions and companies offering HCA programs.
The third, and perhaps most distressing possibiity is that people don't want to do the live-in part at all, so those delivering training to the new HCA's just don't pass it on. I am assured there are people out there who want the live-in situation; I'm just not finding them. It concerns me. If the pool of candidates is so small, I may not have a lot of choice come the end of the day.
I really want to get this done with. The search is tiring, on David, Anne and myself. I need a live-in. Soon.
Sunday, 27 May 2018
The Price Of Bowling
It is one of my common aphorisms; "There is a price for everything, and everything has its price." This has never been intended as a economic observation, nor a cynical view of life. It's a observation which sits right up there with "If it ain't broke, don't fix it", although that is an aphorism I cannot support, especially beyond the narrow construct of mechanical things. No, my aphorism is much closer to life's realities.
The price of a long walk is, or can be, sore legs. The price of sky-jumping is, or can be, those moments of terror. The price of bowling, at least for me, is completely dead shoulder muscles the following day. This is a price I will happily pay, again and again, for as long as I can. I went bowling yesterday, something I had grave doubts about, especially when it came to picking up and tossing a bowling ball about, never mind my poor skill even prior to ALS.
David, his friend Tracey, and I all went to "Let's Bowl" here in Calgary. First of all, this place is terrific, fully accessible for people in wheelchairs to enjoy bowling, a bar, a snack, and a terrific time with friends. The front doors, although a bit of a tight fit, are push-button operated. The internal floor is covered in that low knap industrial carpet, passable for manual wheelchairs and completely indifferent to a power chair. There are ramps up from the floor to the bowling lanes. It all worked for me, except I did not check out the washrooms.
But perhaps the greatest touch, the most useful invention of all, is the bowling ball ramps for people with limited arm strength or movement. In other words, me. This ramp is fascination, rather like a minature ski jump, only the bottom doesn't launch the ball upwards into the air, but on the flat and down the lane. The user aims the ramp. Someone places the bowling ball at the top. The user nudges the ball past the launch zone wherein it takes off down the ramp, then down the lane.
Now, you might think "how easy is this". Let me assure you, it is not as simple as point and shoot. There's a lot of physics involved, ranging from how you launch the ball to micro-adjustments in aim. Even the holes on the ball come into play, something you can adjust for using twist, power, and speed when you manually roll the ball. If you push the ball with fingers off center, it imparts a slight warp in the roll down the lane. If you have the holes too near the base in the ramp, the holes can be heard thumping their way down the lane, imparting directional change as they go.
I've suggested to David that we do a bowling Meet-Up where everyone has to use the ramp. Arranging this is the price David has to pay for letting me have this kind of fun. It was such a wonderful thing, to feel near normal again. I even won a line! Now all I have to do is take a day or two and let my shoulders recover.
The price of a long walk is, or can be, sore legs. The price of sky-jumping is, or can be, those moments of terror. The price of bowling, at least for me, is completely dead shoulder muscles the following day. This is a price I will happily pay, again and again, for as long as I can. I went bowling yesterday, something I had grave doubts about, especially when it came to picking up and tossing a bowling ball about, never mind my poor skill even prior to ALS.
David, his friend Tracey, and I all went to "Let's Bowl" here in Calgary. First of all, this place is terrific, fully accessible for people in wheelchairs to enjoy bowling, a bar, a snack, and a terrific time with friends. The front doors, although a bit of a tight fit, are push-button operated. The internal floor is covered in that low knap industrial carpet, passable for manual wheelchairs and completely indifferent to a power chair. There are ramps up from the floor to the bowling lanes. It all worked for me, except I did not check out the washrooms.
But perhaps the greatest touch, the most useful invention of all, is the bowling ball ramps for people with limited arm strength or movement. In other words, me. This ramp is fascination, rather like a minature ski jump, only the bottom doesn't launch the ball upwards into the air, but on the flat and down the lane. The user aims the ramp. Someone places the bowling ball at the top. The user nudges the ball past the launch zone wherein it takes off down the ramp, then down the lane.
Now, you might think "how easy is this". Let me assure you, it is not as simple as point and shoot. There's a lot of physics involved, ranging from how you launch the ball to micro-adjustments in aim. Even the holes on the ball come into play, something you can adjust for using twist, power, and speed when you manually roll the ball. If you push the ball with fingers off center, it imparts a slight warp in the roll down the lane. If you have the holes too near the base in the ramp, the holes can be heard thumping their way down the lane, imparting directional change as they go.
I've suggested to David that we do a bowling Meet-Up where everyone has to use the ramp. Arranging this is the price David has to pay for letting me have this kind of fun. It was such a wonderful thing, to feel near normal again. I even won a line! Now all I have to do is take a day or two and let my shoulders recover.
Friday, 25 May 2018
Betty's Run; My Annual Plea For Support
I wonder if napping so much just makes me want to nap more. When I do nap, I rarely sleep well. Most of the time I am right on the edge of wakefulness. Sometimes, like yesterday, I can fall into a deep sleep. Others, like today, I wake from my nap feeling more tired than when I started. I lose whole days, like today, in the semi-sleep zone, accomplishing nothing.
Perhaps I can accomplish this. It's that time of year, the time when my bleating grows louder, my cry for donations more strident, not for me but for Betty's Run for ALS. This year it will be on June 10th. That's in just a couple of weeks plus a couple of days.
As usual, at what has truly become an annual event for me, my friends and I will walk, roll, or run to raise funds for both ALS Canada and the ALS Society of Alberta. Given all the Society does for me, especially with equipment loans and emotional support, I encourage my friends to donate. Unfortunately my needs grow and have grown so much in the last couple of years, it's hard for me to ask again and again.
Team Terrific. That's what I call our team. It's what I have called our team for the last six years. I'm not sure, but I think I was on the road for one of those years, but there have been enough others, more than I expected. I am now, by a wide margin, in that 10% group that lives past five years. Team Terrific. It says a lot about the people around me, the people helping me walk this walk, both on June 10th, and every other day of my life.
So here comes the pitch. Please consider sponsoring me, or Team Terrific in Betty's Run this year. Every donation counts, be it a few dollars, or a few hundred dollars. Just click on the link you wish to support.
I have to be honest here. I am a terrible fund raiser for ALS. Most years we barely make $1,000 in donations. Other teams generate 10 times that amount. Most of my friends say they would rather give the money to me, that they help me directly in so many ways. This is all true, so this pitch really goes to those of you who live afar, who are not able to help me on a day to day basis, who want to help cure ALS in whatever way you can.
Please support Betty's Run. Thank you.
Perhaps I can accomplish this. It's that time of year, the time when my bleating grows louder, my cry for donations more strident, not for me but for Betty's Run for ALS. This year it will be on June 10th. That's in just a couple of weeks plus a couple of days.
As usual, at what has truly become an annual event for me, my friends and I will walk, roll, or run to raise funds for both ALS Canada and the ALS Society of Alberta. Given all the Society does for me, especially with equipment loans and emotional support, I encourage my friends to donate. Unfortunately my needs grow and have grown so much in the last couple of years, it's hard for me to ask again and again.
Team Terrific. That's what I call our team. It's what I have called our team for the last six years. I'm not sure, but I think I was on the road for one of those years, but there have been enough others, more than I expected. I am now, by a wide margin, in that 10% group that lives past five years. Team Terrific. It says a lot about the people around me, the people helping me walk this walk, both on June 10th, and every other day of my life.
So here comes the pitch. Please consider sponsoring me, or Team Terrific in Betty's Run this year. Every donation counts, be it a few dollars, or a few hundred dollars. Just click on the link you wish to support.
I have to be honest here. I am a terrible fund raiser for ALS. Most years we barely make $1,000 in donations. Other teams generate 10 times that amount. Most of my friends say they would rather give the money to me, that they help me directly in so many ways. This is all true, so this pitch really goes to those of you who live afar, who are not able to help me on a day to day basis, who want to help cure ALS in whatever way you can.
Please support Betty's Run. Thank you.
Thursday, 24 May 2018
Sleep
I'm tired today, really exhausted. I've spent most of my day sleeping in my PWC. Thank goodness the headrest has been repaired. Otherwise there would be no resting, only work from keeping my head upright all the time. It's surprising how much my head rests these days. It's a sign of neck weakness.
Being tired like this also makes me a bit depressed. The four large Gin and Tonics probably haven't helped with that either. Alcohol, after all, is a classic depressant. Today, none. I just don't feel like it. I don't want to bother making it. I want to save the Gin for another day. I can switch back to wine if I really feel the need. I don't. I'm just reminding myself I still have choices.
The most important choice I have made today is to sleep. I'll go back to that.
Being tired like this also makes me a bit depressed. The four large Gin and Tonics probably haven't helped with that either. Alcohol, after all, is a classic depressant. Today, none. I just don't feel like it. I don't want to bother making it. I want to save the Gin for another day. I can switch back to wine if I really feel the need. I don't. I'm just reminding myself I still have choices.
The most important choice I have made today is to sleep. I'll go back to that.
Wednesday, 23 May 2018
Short Notes
Today, a potpourri of short notes...
- Don't feel like cooking. Don't feel like eating. Had a VERY LARGE bowl of Alpha-bits and Frosted Flakes for breakfast, at noon.
- I'm fat, very fat. All the statistics, all the doctors, all the ALS workers tell me this is a good thing. I hate it. I am disgusted with the immense belly I see in the mirror. I am so sad at what this disease has done to my body.
- My HCA's are re-learning how to water the plants on my deck. Some of the plants, especially the Alyssum, do not seem to have done well in the transfer. It also looks like a dandelion snuck into one of the plant pots. I am hoping time and water fixes the plants not doing so well. If not, remediation may be in order.
- These short bursts are turning into paragraphs. Not the intent.
- My left shoulder and arm are almost useless now. Move it once or twice and it gives up, drops to my side and won't lift up.
- I'm tired today. Napped all day so far.
- I broke the headrest on my PWC last night. Allen from ALS Society fixed it today but found out my seatback is badly bent on one side. More work needed.
- I had a dream last night. It was a fun dream. That is all.
Tuesday, 22 May 2018
The Garden Is In
The garden is in. David took me plant shopping yesterday. Then Elizabeth and Andrea came over to do all the planting, with David doing all the fetching. Then they all cleaned up as much as they could before exhaustion set in; mine, not theirs. Finally, Kathy, my HCA, swept up the last of the detritus from all the work, leaving me with a beautiful place to sit in the sun, doing whatever I might be yet able to do.
One might wonder why this is such a big deal to me, especially if you new me "before". Even for the first few years with ALS I didn't bother too much about my balcony. In fact, for the first few years it was almost a forlorn, unattended place. Yet last summer I spent $300 for planters, accessories, and plants. This year it was only $150 for plants, as I had all the planters and such. That's a lot of money for someone on limited resources.
Anne said it best the other day. Up until last year, I spent limited time on that balcony. My summers were for travel, first on my own, then with travel partners. Last year my limitations, both financially and personally, put an end to the summer travel. I am at home a lot more these days, spending a lot more time within the four walls of my apartment.
While my home has become increasingly a medical prison, it need not look sterile and plain. I'll find a way to cover that money. Like last year, people will help. I'll take it easy on rum and Scotch. Who knows what else might happen? Good things do. What the garden on my balcony means is that I get to sit in this infinitesimally small part of the universe, surrounded by beauty, fragrance, life. It's worth it. Thanks to all who helped.
One might wonder why this is such a big deal to me, especially if you new me "before". Even for the first few years with ALS I didn't bother too much about my balcony. In fact, for the first few years it was almost a forlorn, unattended place. Yet last summer I spent $300 for planters, accessories, and plants. This year it was only $150 for plants, as I had all the planters and such. That's a lot of money for someone on limited resources.
Anne said it best the other day. Up until last year, I spent limited time on that balcony. My summers were for travel, first on my own, then with travel partners. Last year my limitations, both financially and personally, put an end to the summer travel. I am at home a lot more these days, spending a lot more time within the four walls of my apartment.
While my home has become increasingly a medical prison, it need not look sterile and plain. I'll find a way to cover that money. Like last year, people will help. I'll take it easy on rum and Scotch. Who knows what else might happen? Good things do. What the garden on my balcony means is that I get to sit in this infinitesimally small part of the universe, surrounded by beauty, fragrance, life. It's worth it. Thanks to all who helped.
Sunday, 20 May 2018
A Terrific Long Weekend? It's Possible.
It's a wonderful feeling to have two good days in a row; two days without a catheter accident... so far, two days without a bowel issue, two days where I have had great food and company, two days where I have gotten out into the sun, two days where weakness has not damaged my day. The funny thing is that a catheter accident doesn't even feel like a big deal anymore, but those other things... they mattter. A great deal.
The sun is shining; I even got a bit of a sunburn. That's my imitation of a tan. Actually I am lucky that way. This mild burn, certainly not carcinogenic in any hurry, will turn into a bit of a tan and, with any luck, stay with my through the summer. It used to work that way on the boat, where the first burn of the season turned into a dark, protective layer. It doesn't mean I didn't use sunscreen; I surely did. It just means that I don't have to worry quite as much as others in my family.
Yesterday my friend Brad came over. He loves to cook as much as I do, so I let him loose in my kitchen where I had some pre-selected ingredients for a meat loaf; ground beef, Italian style sausage meat, mushrooms, various spices, and of course, onions, garlic and peppers. Brad worked his magic like few others can, giving me this fabulous meat loaf dinner, with mushroom gravy. Along with it we had my own homemade Greek Salad, and some Potato Salad from Costco that we both really like.
This afternoon, Anne will be here to help me with wine chores. All three of the wine kits I have on the go need some work today. I have one which will need bottling next weekend, so I will need to ask for help with that. Anne does so much with wine. All I can do is repay her with a nice dinner. We will have leftover meatloaf.
You see, good days. Two in a row. Tomorrow could quite possibly be three. I want to do some stuff with my planters. I have asked a friend to come help. If that works out, it will have been a terrific long weekend.
The sun is shining; I even got a bit of a sunburn. That's my imitation of a tan. Actually I am lucky that way. This mild burn, certainly not carcinogenic in any hurry, will turn into a bit of a tan and, with any luck, stay with my through the summer. It used to work that way on the boat, where the first burn of the season turned into a dark, protective layer. It doesn't mean I didn't use sunscreen; I surely did. It just means that I don't have to worry quite as much as others in my family.
Yesterday my friend Brad came over. He loves to cook as much as I do, so I let him loose in my kitchen where I had some pre-selected ingredients for a meat loaf; ground beef, Italian style sausage meat, mushrooms, various spices, and of course, onions, garlic and peppers. Brad worked his magic like few others can, giving me this fabulous meat loaf dinner, with mushroom gravy. Along with it we had my own homemade Greek Salad, and some Potato Salad from Costco that we both really like.
This afternoon, Anne will be here to help me with wine chores. All three of the wine kits I have on the go need some work today. I have one which will need bottling next weekend, so I will need to ask for help with that. Anne does so much with wine. All I can do is repay her with a nice dinner. We will have leftover meatloaf.
You see, good days. Two in a row. Tomorrow could quite possibly be three. I want to do some stuff with my planters. I have asked a friend to come help. If that works out, it will have been a terrific long weekend.
Saturday, 19 May 2018
Failing To Feed Myself
I managed to eat my breakfast today. It did not go so well with my dinner last night, where my arms failed me completely, leaving me unable to pick up a spoon, unable to lift the mac and cheese from the bowl to my mouth, unable to feed myself. In the final analysis, my HCA had to feed me my dinner. This situation becomes increasingly frustrating when you consider that I was the one who had prepared that dinner. So I can cook, but not eat; or eat, but not cook.
In fact yesterday almost seems like two separate days. I got up when my HCA, Yvonne, arrived. She is perpetually late, so my rising time was 11:05, rather than the normal 10:30 AM. I don't like the lateness most days, as it takes from me what is a very limited amount of time in my days. Nonetheless, perhaps I should be grateful she arrived at all. I've had that happen too.
So she arrived, got me up, showered me, dressed me, and did my exercises, after which I was thoroughly exhasuted. I dozed in my wheelchair until late in the afternoon, when my afternoon HCA arrived, fixed a disconnected catheter tube and changed my wet clothing. Shortly aftwards, Dion came for a visit, an excellent visit which roused me enough in spirit to convince me I once again had energy. It was a trick.
After Dion left I want shopping, all the way over to Brentwood. I wanted to pick up some beer at the liquor store as I have none on hand to offer guests, especially those who don't like wine. I know, there are some people like that. So off I went, rolling over to Brentwood, shopping at the liquor store and for a couple of things at Co-op. Nothing big, Nothing urgent. Unfortunately I took a lot longer browsing than thought. By the time I got home to start dinner, it was already 9:00 PM. My HCA, Kabira, called shortly after that, saying she would arrive on time, at 9:30 PM, to put me to bed.
I had not eaten that day, not a bite. When my HCA was to make breakfast, I did not have the energy for it, nor even for a cup of coffee. Then again, she had but 10 minutes remaining in the schedule, so any sort of cooked breakfast was out of the question. I had no cereal, one of the things I eventually purchased later in the day. Yet here I was with just a few moments to make and eat dinner. So I grabbed a box of KD, mac and cheese at its finest. Even though this is advertised as dinner in less than 10 minutes, it took me almost 30 minutes thanks to ALS. I pushed hard to get it done, while at the same time loading groceries into the fridge and cleaning up the kitchen counter.
Kabira arrived at the same time as my KD was ready. She said not to worry, that I should eat. She headed into the bedroom to get my bed ready, to prepare the catheter supplies, to do what she does before slinging me into place. I tried to eat.
Tried. That's the word. I tried to lift up the spoon. I could not. My right arm failed completely. My left arm had failed about a half hour earlier. Neither arm was strong enough to lift the spoonful of macaroni and cheese. I could't even get it past the edge of the bowl. I felt ashamed, terrified, shocked, afraid. This is the next big thing to go. Soon, feeding myself will be a thing of the past. Someone else will have to feed me. The ironic part is that I had the strength and ability to cook the dinner, but not to eat it.
Even today I found myself needing both hands to lift my fork at breakfast. So what next? When I have dinner with friends, will one of them have to feed me? Will I be completely unable to feed myself in a few weeks or months? What I am going to do, other than cry? This might be the turning point, or the end point. It is something I have to live with, and think about every time I try to eat something. Yes, try. That is the word. Yoda was wrong.
In fact yesterday almost seems like two separate days. I got up when my HCA, Yvonne, arrived. She is perpetually late, so my rising time was 11:05, rather than the normal 10:30 AM. I don't like the lateness most days, as it takes from me what is a very limited amount of time in my days. Nonetheless, perhaps I should be grateful she arrived at all. I've had that happen too.
So she arrived, got me up, showered me, dressed me, and did my exercises, after which I was thoroughly exhasuted. I dozed in my wheelchair until late in the afternoon, when my afternoon HCA arrived, fixed a disconnected catheter tube and changed my wet clothing. Shortly aftwards, Dion came for a visit, an excellent visit which roused me enough in spirit to convince me I once again had energy. It was a trick.
After Dion left I want shopping, all the way over to Brentwood. I wanted to pick up some beer at the liquor store as I have none on hand to offer guests, especially those who don't like wine. I know, there are some people like that. So off I went, rolling over to Brentwood, shopping at the liquor store and for a couple of things at Co-op. Nothing big, Nothing urgent. Unfortunately I took a lot longer browsing than thought. By the time I got home to start dinner, it was already 9:00 PM. My HCA, Kabira, called shortly after that, saying she would arrive on time, at 9:30 PM, to put me to bed.
I had not eaten that day, not a bite. When my HCA was to make breakfast, I did not have the energy for it, nor even for a cup of coffee. Then again, she had but 10 minutes remaining in the schedule, so any sort of cooked breakfast was out of the question. I had no cereal, one of the things I eventually purchased later in the day. Yet here I was with just a few moments to make and eat dinner. So I grabbed a box of KD, mac and cheese at its finest. Even though this is advertised as dinner in less than 10 minutes, it took me almost 30 minutes thanks to ALS. I pushed hard to get it done, while at the same time loading groceries into the fridge and cleaning up the kitchen counter.
Kabira arrived at the same time as my KD was ready. She said not to worry, that I should eat. She headed into the bedroom to get my bed ready, to prepare the catheter supplies, to do what she does before slinging me into place. I tried to eat.
Tried. That's the word. I tried to lift up the spoon. I could not. My right arm failed completely. My left arm had failed about a half hour earlier. Neither arm was strong enough to lift the spoonful of macaroni and cheese. I could't even get it past the edge of the bowl. I felt ashamed, terrified, shocked, afraid. This is the next big thing to go. Soon, feeding myself will be a thing of the past. Someone else will have to feed me. The ironic part is that I had the strength and ability to cook the dinner, but not to eat it.
Even today I found myself needing both hands to lift my fork at breakfast. So what next? When I have dinner with friends, will one of them have to feed me? Will I be completely unable to feed myself in a few weeks or months? What I am going to do, other than cry? This might be the turning point, or the end point. It is something I have to live with, and think about every time I try to eat something. Yes, try. That is the word. Yoda was wrong.
Thursday, 17 May 2018
Bad Arm Day Revisited
As is usual with ALS, things are changing. I am going to have to redefine what a "bad arm day" is. Six months ago, a bad arm day meant pain in my arms, the inability to pick up a wine kit, difficulty reaching the second shelf in my cupboards. Today I am having a bad arm day, only now it means difficulty feeding myself, the inability to lift my arms away from my sides, and, as always, pain.
Brunch today was pancakes, the thin crepe style that I like with whipped cream and fresh fruit. Fresh fruit was absent today; I didn't pick any up at Safeway the other day. Instead, today I had whipped cream with plum jam and apricot and red pepper jelly. It was a tasty combination, at least that portion which I could lift to my mouth.
My arms were able to lift the fork only about halfway up my chest. I completed the task by leaning over towards the fork, then using my left hand to push the fork, which was held in my stronger right arm. This work for a bit, but then both arms became too tired to do anything at all.
So I switched approaches. First, I slid the plate onto a tray I had place on my lap. Then I leaned back in my wheelchair so the angle of approach from plate to mouth was substantially lessened. That way I could more slide my arm sideways rather than lift it up. I managed to complete the task of feeding myself in this manner.
This is what a bad arm day looks like now; potential inability to feed myself without using alternate methods. When I said I would let things end naturally once I could no longer eat, this was not what I had in mind. I can still eat, happily and handily. I just can't get the food to my mouth consistently.
I just have to hope things get better as the day goes on. After all, I want my wine this evening.
Brunch today was pancakes, the thin crepe style that I like with whipped cream and fresh fruit. Fresh fruit was absent today; I didn't pick any up at Safeway the other day. Instead, today I had whipped cream with plum jam and apricot and red pepper jelly. It was a tasty combination, at least that portion which I could lift to my mouth.
My arms were able to lift the fork only about halfway up my chest. I completed the task by leaning over towards the fork, then using my left hand to push the fork, which was held in my stronger right arm. This work for a bit, but then both arms became too tired to do anything at all.
So I switched approaches. First, I slid the plate onto a tray I had place on my lap. Then I leaned back in my wheelchair so the angle of approach from plate to mouth was substantially lessened. That way I could more slide my arm sideways rather than lift it up. I managed to complete the task of feeding myself in this manner.
This is what a bad arm day looks like now; potential inability to feed myself without using alternate methods. When I said I would let things end naturally once I could no longer eat, this was not what I had in mind. I can still eat, happily and handily. I just can't get the food to my mouth consistently.
I just have to hope things get better as the day goes on. After all, I want my wine this evening.
Wednesday, 16 May 2018
Fear Of The Future
I was reading an article in The Washington Post online about O.J. Brigance, the once famous NFL player now struggling with ALS. Actually he's been struggling with it for 11 years, an unexpected life span with such a voracious illness. The article made much of his 11 year survival. Yet if you look at his picture you will see that he has both a feeding tube as well as a breathing apparatus. With this kind of technology, along with his tremendous support network, that longevity is not necessarily surprising. Consider Stephen Hawking.
This is one of the difficult questions I face. I love life. I love being alive. Beyond ALS, I am surprisingly happy in my life, busy, active. I have people in and out almost daily. My HCA's are, for the most part, tremendously positive and supporting of me. Life is good.
Then there comes the living challenge of ALS. I am losing my arm strength. Soon I will not be able to feed myself; I will need someone to feed me. After that I will lose my ability to chew my own food; I will need a feeding tube to stay alive. Finally my diaphragm will fail; I will need an external breathing device along with having to have a tracheostomy.
I have always said that I do not want a life on machinery. Yet that is where I am already, the machine in question being my Power Wheelchair, or the slings and lifts I use daily. Perhaps I should say I don't want a life with invasive support procedures, like a feeding tube. I have always been a carnal person, loving the physical pleasures in my life, the taste of a great meal, the aroma of a fine wine, the warmth of a hand held in mine. These are the things I am now losing, or faced with losing.
So as the fateful day approaches, that day when I can no longer eat or drink, unable to enjoy the taste, the smell, the sensation, is that enough to make me want to leave this life? I have always been confident that my answer would be yes. I want to die "natually" rather than live "articially". These days my certainty is waning. I no longer know what the answer will be when that day comes. For now, all I can do is enjoy what is still in my life, without worrying about the future. That's as good as it gets.
This is one of the difficult questions I face. I love life. I love being alive. Beyond ALS, I am surprisingly happy in my life, busy, active. I have people in and out almost daily. My HCA's are, for the most part, tremendously positive and supporting of me. Life is good.
Then there comes the living challenge of ALS. I am losing my arm strength. Soon I will not be able to feed myself; I will need someone to feed me. After that I will lose my ability to chew my own food; I will need a feeding tube to stay alive. Finally my diaphragm will fail; I will need an external breathing device along with having to have a tracheostomy.
I have always said that I do not want a life on machinery. Yet that is where I am already, the machine in question being my Power Wheelchair, or the slings and lifts I use daily. Perhaps I should say I don't want a life with invasive support procedures, like a feeding tube. I have always been a carnal person, loving the physical pleasures in my life, the taste of a great meal, the aroma of a fine wine, the warmth of a hand held in mine. These are the things I am now losing, or faced with losing.
So as the fateful day approaches, that day when I can no longer eat or drink, unable to enjoy the taste, the smell, the sensation, is that enough to make me want to leave this life? I have always been confident that my answer would be yes. I want to die "natually" rather than live "articially". These days my certainty is waning. I no longer know what the answer will be when that day comes. For now, all I can do is enjoy what is still in my life, without worrying about the future. That's as good as it gets.
Tuesday, 15 May 2018
DQ Boost
I am weak today, especially in my arms. This is, of course, the price I pay for being so active yesterday. It wasn't just the run to Staples and Costco, nor the evening run to Safeway for milk and eggs. Nor would I lay it at the foot of the sleeping pill I took last night. It is all of these things combined, plus the normal affects of ALS which do me in today.
This does not mean I will do nothing today. What it does mean is that I will be tired all day, ready for an early bedtime tonight. It means I will have to push myself so I don't just sit in my chair and nap all day. It also means any tasks I manage to perform will be limited in nature and slower in delivery. It's just what happens.
ALS is a disease of attrition, both in the global sense and in the personal sense. This disease persistently wears down its victims, grinding them until all that is left is their mind, something ALS touches in most cases, yet touches in limited and unknown ways. Then here is the personal attrition, where the disease destroys your individual muscles, causing loss and pain in small steps each and every day, once again wearing you away until you have nothing but your thoughts.
Today I'm tired; in my arms, in my legs, in my core, in my neck. Today I am tired; sleepy, barely able to keep my eyes open, hoping for a nap right now, and another after I get back from meeting a friend at the mall. I plan, however, on using a Peanut Buster Parfait from Dairy Queen to give me a boost, to keep me going, at least for an hour or two.
This does not mean I will do nothing today. What it does mean is that I will be tired all day, ready for an early bedtime tonight. It means I will have to push myself so I don't just sit in my chair and nap all day. It also means any tasks I manage to perform will be limited in nature and slower in delivery. It's just what happens.
ALS is a disease of attrition, both in the global sense and in the personal sense. This disease persistently wears down its victims, grinding them until all that is left is their mind, something ALS touches in most cases, yet touches in limited and unknown ways. Then here is the personal attrition, where the disease destroys your individual muscles, causing loss and pain in small steps each and every day, once again wearing you away until you have nothing but your thoughts.
Today I'm tired; in my arms, in my legs, in my core, in my neck. Today I am tired; sleepy, barely able to keep my eyes open, hoping for a nap right now, and another after I get back from meeting a friend at the mall. I plan, however, on using a Peanut Buster Parfait from Dairy Queen to give me a boost, to keep me going, at least for an hour or two.
Monday, 14 May 2018
Hanging On
Six months ago I made the decision to end my life. The target date was to be March 15, or some date around there. You see, you can't actually pick a date, per se. You have to arrange an appointment, preferably a couple of weeks away from your target date. Nonetheless, I had an approximate target date. I got the MAID papers ready, asking two of my close friends, Elizabeth and David, to sign them. They were in the room with me when I was diagnosed; I thought it poetic that they should sign the papers which would lead to my exit.
November and December were harsh months. It wasn't just the winter which closed in on me. It was the loss of freedom, that I could no longer get in my truck to go somewhere. It was the increasing pain in my left shoulder, in my arms, in my neck. It was the realization that both the pain and the weakness were getting worse, at a substantial pace. I could see it coming, complete loss of my arms. It was a place I didn't want to go.
Then March came. I did not book the final appointment. I canceled my departure, chickening out of it all, fearful of facing death. While I was, and still am, declining daily, I just could not bring myself to book the date for my last breath. I just couldn't do it.
Now, a couple of months later, my arms have gotten much worse. I am beginning to struggle with feeding myself. I cannot pick up a towel from the floor, nor my water jug on the table. Getting something out of the fridge, regardless of weight, is tremendously difficut. Making meals is getting to be a truly non-trivial task.
Yet I feel completely different today than I did last November. Yes, winter has passed; it does make a difference. However I know have the van, with David making sure I get out at least once a week, sometimes more. Others are helping too. We are also working hard at getting me a live-in, someone who can help with both the simple and complex tasks I can no longer do. My financial situation, while still precarious, is good for a while, something which challenges a great many other PALS.
The only things missing are the things which have long been missing. I am still alone, lacking a partner or lover, someone to be with both emotionally and physcially, an important thing for me. I'm still getting worse; that never changes with ALS. Yet I have so much, so much in my life. In the darker days, it's an easy thing to forget.
I will have to leave, sooner or later. When my arms fail completely, that will be a big pressure point. But until that day comes, I am going to hang on for all I am worth, fighting daily to live my life, to live with ALS. I'm not yet ready to let go.
November and December were harsh months. It wasn't just the winter which closed in on me. It was the loss of freedom, that I could no longer get in my truck to go somewhere. It was the increasing pain in my left shoulder, in my arms, in my neck. It was the realization that both the pain and the weakness were getting worse, at a substantial pace. I could see it coming, complete loss of my arms. It was a place I didn't want to go.
Then March came. I did not book the final appointment. I canceled my departure, chickening out of it all, fearful of facing death. While I was, and still am, declining daily, I just could not bring myself to book the date for my last breath. I just couldn't do it.
Now, a couple of months later, my arms have gotten much worse. I am beginning to struggle with feeding myself. I cannot pick up a towel from the floor, nor my water jug on the table. Getting something out of the fridge, regardless of weight, is tremendously difficut. Making meals is getting to be a truly non-trivial task.
Yet I feel completely different today than I did last November. Yes, winter has passed; it does make a difference. However I know have the van, with David making sure I get out at least once a week, sometimes more. Others are helping too. We are also working hard at getting me a live-in, someone who can help with both the simple and complex tasks I can no longer do. My financial situation, while still precarious, is good for a while, something which challenges a great many other PALS.
The only things missing are the things which have long been missing. I am still alone, lacking a partner or lover, someone to be with both emotionally and physcially, an important thing for me. I'm still getting worse; that never changes with ALS. Yet I have so much, so much in my life. In the darker days, it's an easy thing to forget.
I will have to leave, sooner or later. When my arms fail completely, that will be a big pressure point. But until that day comes, I am going to hang on for all I am worth, fighting daily to live my life, to live with ALS. I'm not yet ready to let go.
Sunday, 13 May 2018
Bad Arm Day
I'm paying today for working hard yesterday. My arms are very weak, especially my right arm, the one I use the most. Thankfully, typing allows me to rest my wrists on the table, using only my hands, shaky as they may be. It happens a lot these days, that I tire out my arms and they stop working.
It happened yesterday after I did some grocery shopping. I was holding onto the groceries, including a five pound bag of potatoes, with my left hand, while the bags rested on my lap. I had forgotten the basket David gave to me for just this purpose. By the time I got home, my left arm was so tired that it simply dropped to my side when released from its task, and I could not lift it at all. It just hung there, dead as my legs. Fortunately after a rest of a few minutes, it came back to life; I was able to use it again, but only for light work.
My arms are failing faster than I had hoped, more than I had hoped. At this rate I will be armless in a few months, maybe sooner. I sure hope not; I want to be around for Christmas. This whole arm thing is one of those lines in the sand. Without arms I cannot feed myself. I don't want a feeding tube, so I either have to crumble on that line, or I stop eating, allowing the inevitable to take place, perhaps even helping it along.
We'll have to wait and see.
It happened yesterday after I did some grocery shopping. I was holding onto the groceries, including a five pound bag of potatoes, with my left hand, while the bags rested on my lap. I had forgotten the basket David gave to me for just this purpose. By the time I got home, my left arm was so tired that it simply dropped to my side when released from its task, and I could not lift it at all. It just hung there, dead as my legs. Fortunately after a rest of a few minutes, it came back to life; I was able to use it again, but only for light work.
My arms are failing faster than I had hoped, more than I had hoped. At this rate I will be armless in a few months, maybe sooner. I sure hope not; I want to be around for Christmas. This whole arm thing is one of those lines in the sand. Without arms I cannot feed myself. I don't want a feeding tube, so I either have to crumble on that line, or I stop eating, allowing the inevitable to take place, perhaps even helping it along.
We'll have to wait and see.
Saturday, 12 May 2018
Lamb Shanks For Dinner
Notwithstanding the several non-trival obstacles, in spite of weakness and rapid exhaustion, I drove myself today to flour-coat and spice four lamb shanks. I browned them in olive oil in my large frying pan, then put them into the slow cooker atop a cup of Cabernet Sauvignon with three Bay leaves afloat on the surface. This is the first step in the day long process of preparing my Slow Cooker Lamb Shanks.
The lamb shanks are supposed to cook for 8 hours. Home Care arrived late, but I bustled her off as quickly as I cook, forgoing breakfast to get this work done. The most difficult parts were all of it; getting out the pan to flour-coat and spice the shanks, getting the spices out of the cupboard, picking up all the spices which fell out of the spice tray when I dropped it, getting the shanks from the packaging into the spicing tray then into the frying pan, getting them out of the frying pan into the slow cooker. Oh, then there are the merely not so easy parts, like opening the bottle of wine and tidying up the mess, mostly.
There is a second step to all this. The lambshanks will be flavourful enough on their own. However I like to saute some onion, garlic, peppers, and, oddly enough, carrots in the remnants of the browning pan, then add some more red wine, or sometimes chicken stock, then reduce it down, finally adding it to the slow cooker. I plan on doing this part after I have a break, take about an hour to relax and recover.
In order to prepare any kind of a meal these days, I am compelled to do it in stages, carefully. If there is anything I can do the night before, I usually do my best. In fact I have decided that the next time I do lamb shanks, I will prepare everything the night before, putting the shanks in the slow cooker with the wine and bay leaf, preparing the vegetables in stock, then adding them when I plug in the slow cooker. That way things get doing almost an hour sooner, an important consideration when something calls for 8 hours in the slow cooker.
So now I rest, drinking my coffee, writing this post, waiting for David to show up with an Egg McMuffin for me. After that, part two. I think I will use chicken stock this time instead of wine. There's plenty in the slow cooker already.
The lamb shanks are supposed to cook for 8 hours. Home Care arrived late, but I bustled her off as quickly as I cook, forgoing breakfast to get this work done. The most difficult parts were all of it; getting out the pan to flour-coat and spice the shanks, getting the spices out of the cupboard, picking up all the spices which fell out of the spice tray when I dropped it, getting the shanks from the packaging into the spicing tray then into the frying pan, getting them out of the frying pan into the slow cooker. Oh, then there are the merely not so easy parts, like opening the bottle of wine and tidying up the mess, mostly.
There is a second step to all this. The lambshanks will be flavourful enough on their own. However I like to saute some onion, garlic, peppers, and, oddly enough, carrots in the remnants of the browning pan, then add some more red wine, or sometimes chicken stock, then reduce it down, finally adding it to the slow cooker. I plan on doing this part after I have a break, take about an hour to relax and recover.
In order to prepare any kind of a meal these days, I am compelled to do it in stages, carefully. If there is anything I can do the night before, I usually do my best. In fact I have decided that the next time I do lamb shanks, I will prepare everything the night before, putting the shanks in the slow cooker with the wine and bay leaf, preparing the vegetables in stock, then adding them when I plug in the slow cooker. That way things get doing almost an hour sooner, an important consideration when something calls for 8 hours in the slow cooker.
So now I rest, drinking my coffee, writing this post, waiting for David to show up with an Egg McMuffin for me. After that, part two. I think I will use chicken stock this time instead of wine. There's plenty in the slow cooker already.
Friday, 11 May 2018
Silva Bay
It's breezy here today, brisk is the best word. The high today will only be 15C, with a wind blowing at about 18 km/hr. For sailors, that's just about 10 knots, a 3 on the Beaufort scale, a gentle breeze. Those of us who have spent any amount of time under sail feel with wind differently. It doesn't just blow; it has direction, force, gusts, variability. It's a living part of the ocean, a spirit formed by the action of land, sea, and heat, or cold.
I remember the first time I truly felt the wind, the first time I adventured under sail, crossing the Straits of Georgia, now called the Salish Sea, a name change more polically correct. My Dad had given me his Reinell 26' sailboat, a craft less worthy of the term "sail" that I wished, yet more worthy than the skiff I had at home. It's design intent was to be a weekend camper on the water, a party boat, a family boat, rather than a sleek sailer. Nonetheless, it was mine; more like ours, as my children were the ever present crew, some enjoying the process more than others. Children are like that, like the wind, variable with their own personality.
I gathered my crew together, children of elementary school age, and we went down to the sea in our ship. Actually we sat in the marina for a while first, getting things organized. I had charted a course that would take us out of Howe Sound, across the straits, into Silva Bay. Charted is a bit of a joke; I had plotted a course on a BC Parks map which showed the straits in appropriate scale as well as having the unusual feature of a compass rose on what was essentially a road map, doing this work at home well before our adventure, making the rookie mistake of actually drawing lines on the map.
My pre-work meant we were pretty much ready to go once our gear was stowed. We headed out with the wind just of the nose the boat. That Reinell couldn't tack worth a tinker's damn, so we powered up the outboard hanging off the stern. We spent a lot of time like that, motoring in our sailboat, a craft which failed completely at sailing windward and was more likely to wear away than tack across. Still, we had a great time on that boat, poking our nose into coves and bays all round the Gulf Islands, building our experience for the time when I would have a "real" sailboat.
Besides laughing children, sparkling water, and pleasant breezes, there are two things I remember msot of all from that maiden voyage. First, the idea of "line of sight" navigation was pointless. I had no idea of where we were really headed beyond the path which I had charted. This didn't bother me all that much; the Straits of Georgia are completely bounded by land, most within less than 10 miles. I could see, in general, where I was going. It was just the final piloting which was problematic.
The second thing which truly struck me was how much Silva Bay reminded me of some fantasy place, perhaps in Polynesia or something like that, a hidden hurricane hole, safe from the worst of weather, fabulous on a sunny day, luxurious on a summer' eve. In the ultimate of grace, Silva Bay had a pub and restaurant up the steep foreshore edge. After climbing the hill, we could sit on the balcony and oversee all which came and went from this perfect little anchorage.
I think that was the day I truly fell in love with life on small boat, kids and all.
I remember the first time I truly felt the wind, the first time I adventured under sail, crossing the Straits of Georgia, now called the Salish Sea, a name change more polically correct. My Dad had given me his Reinell 26' sailboat, a craft less worthy of the term "sail" that I wished, yet more worthy than the skiff I had at home. It's design intent was to be a weekend camper on the water, a party boat, a family boat, rather than a sleek sailer. Nonetheless, it was mine; more like ours, as my children were the ever present crew, some enjoying the process more than others. Children are like that, like the wind, variable with their own personality.
I gathered my crew together, children of elementary school age, and we went down to the sea in our ship. Actually we sat in the marina for a while first, getting things organized. I had charted a course that would take us out of Howe Sound, across the straits, into Silva Bay. Charted is a bit of a joke; I had plotted a course on a BC Parks map which showed the straits in appropriate scale as well as having the unusual feature of a compass rose on what was essentially a road map, doing this work at home well before our adventure, making the rookie mistake of actually drawing lines on the map.
My pre-work meant we were pretty much ready to go once our gear was stowed. We headed out with the wind just of the nose the boat. That Reinell couldn't tack worth a tinker's damn, so we powered up the outboard hanging off the stern. We spent a lot of time like that, motoring in our sailboat, a craft which failed completely at sailing windward and was more likely to wear away than tack across. Still, we had a great time on that boat, poking our nose into coves and bays all round the Gulf Islands, building our experience for the time when I would have a "real" sailboat.
Besides laughing children, sparkling water, and pleasant breezes, there are two things I remember msot of all from that maiden voyage. First, the idea of "line of sight" navigation was pointless. I had no idea of where we were really headed beyond the path which I had charted. This didn't bother me all that much; the Straits of Georgia are completely bounded by land, most within less than 10 miles. I could see, in general, where I was going. It was just the final piloting which was problematic.
The second thing which truly struck me was how much Silva Bay reminded me of some fantasy place, perhaps in Polynesia or something like that, a hidden hurricane hole, safe from the worst of weather, fabulous on a sunny day, luxurious on a summer' eve. In the ultimate of grace, Silva Bay had a pub and restaurant up the steep foreshore edge. After climbing the hill, we could sit on the balcony and oversee all which came and went from this perfect little anchorage.
I think that was the day I truly fell in love with life on small boat, kids and all.
Thursday, 10 May 2018
Bluetooth
There are lots of big changes and events that go with having ALS, lots of which you can pinpoint as having happened at a point in time or a specific place. I can still remember, in an almost complete movie-like internal visual, the moment, time and place where I fell the last time before I went into the ER to find out what was going on with my body. I can't visualize it exactly, but I know when I decided it was no longer safe for me to drive. There are plenty of things like that.
While the big events get to me in a powerful, deep emotional sense, they don't happen every day. Thank goodness for that. There are enough of them; I don't need them daily. What does happen daily are the million little things, the knife with a thousand cuts, that I once took for granted and now can no longer do, acts that were once simple which I can no longer perform.
This morning I rolled into my kitchen, at last to spy the cork hotpads I had been madly looking for over the last few days. They were in the corner on my kitchen counter. I wanted to just grab them and put them away, but I couldn't reach them. Fortunately Sam, my HCA, was there. She reached them for me so I could roll over to the dining room cabinet and put them away where they belonged. A simple task, an almost daily kind of chore, yet one I could not do.
There's also the challenge with my Panko Bread Crumbs. Helpful Health Care Aides have kindly put the bags of crumbs away, up on the highest shelf in my corner cabinet, well out of my reach. It's not a big deal; I only use them once in a while, especially for pork roasts or fried chicken or casseroles. I have had to ask a neighbour on more than one occasion to get them down for me. I would prefer to have them in one of my cannisters on the counter, but I need the cannister too. It is also up on the highest shelf of a cupboard, sitting empty, waiting for me to use it. Yet I cannot reach it. So I just look, longingly, at a minor chore that would take most people a moment, a chore that will frustrate me until I get help, yet is so small I usually forget to ask.
These are the things which drive me crazy, the little things I don't think about until the moment of need, the small tasks which used to be so easy. My friend David in Texas sent me four Bluetooth control outlet adapters, specifically so I could control certain devices now out of reach. Someone will have to set them up for me, but after that I can work them with my phone, perhaps even my computer. I wish I had a Bluetooth device for those other little chores. That way I wouldn't get so upset when I remember those things while nobody is here to help.
While the big events get to me in a powerful, deep emotional sense, they don't happen every day. Thank goodness for that. There are enough of them; I don't need them daily. What does happen daily are the million little things, the knife with a thousand cuts, that I once took for granted and now can no longer do, acts that were once simple which I can no longer perform.
This morning I rolled into my kitchen, at last to spy the cork hotpads I had been madly looking for over the last few days. They were in the corner on my kitchen counter. I wanted to just grab them and put them away, but I couldn't reach them. Fortunately Sam, my HCA, was there. She reached them for me so I could roll over to the dining room cabinet and put them away where they belonged. A simple task, an almost daily kind of chore, yet one I could not do.
There's also the challenge with my Panko Bread Crumbs. Helpful Health Care Aides have kindly put the bags of crumbs away, up on the highest shelf in my corner cabinet, well out of my reach. It's not a big deal; I only use them once in a while, especially for pork roasts or fried chicken or casseroles. I have had to ask a neighbour on more than one occasion to get them down for me. I would prefer to have them in one of my cannisters on the counter, but I need the cannister too. It is also up on the highest shelf of a cupboard, sitting empty, waiting for me to use it. Yet I cannot reach it. So I just look, longingly, at a minor chore that would take most people a moment, a chore that will frustrate me until I get help, yet is so small I usually forget to ask.
These are the things which drive me crazy, the little things I don't think about until the moment of need, the small tasks which used to be so easy. My friend David in Texas sent me four Bluetooth control outlet adapters, specifically so I could control certain devices now out of reach. Someone will have to set them up for me, but after that I can work them with my phone, perhaps even my computer. I wish I had a Bluetooth device for those other little chores. That way I wouldn't get so upset when I remember those things while nobody is here to help.
Wednesday, 9 May 2018
Dry
I've been out all day. David and I took the van to do a bunch of errands, to have some fun. Our day started at Accessable Vehicle Solutions to see if there was any interest in my pickup truck. Not much; the dealer said we would be better to sell it just as a truck, not an accessible vehicle. So we will, starting tomorrow. Then we dropped a portable ramp off at the ALS Society of Alberta. I had been borrowing it for use with the truck; now I no longer need it.
We went up to Balzac to explore the "New Horizons Mall". It is intended as an Asian style mall filled with independent merchants, no chain stores, no anchor tenants, nor preponderance of ladies fashion outlets. We'll see about that last one. This new mall is right across the street from Ironmills Mall, the one with Bass Pro and about a thousand ladies fashion outlets. It also has a couple of decent restaurants. We skipped the good food, deciding instead on Boston Pizza. After dinner we headed to Walmart where we picked up a hair dryer for me, plus a few more shirts. I am too large these days for my XL shirts, thus I am replacing them with XXL. It's only because of my belly.
You might have noticed that I made mention of a hair dryer. Why would I, almost bald, dedicated to the shaved head look these days, need a hair dryer? Well, not to dry my hair. The part of me we need to dry these days is my penis and general groin area. I am developing some nasty skin damage down there, damage which could get serious. So we want to make sure it gets well dried.
Part of the problem is that one of my caregivers pinched my penis while putting on my condom catheter, leaving a small cut in the skin. This is a very moist area, so that cut developed very quickly into a small, flaming red sore. That same area is also where something like a diaper rash is developing, most likely due in part to that original cut, compounded by the amount of moisture I generate down there. Hence the blow dryer.
I feel like "Tim the tool man Taylor" on that show Home Improvement; "more power". Perhaps an industrial carpet dryer from Home Depot would do the job. I need to be dry. I need to be clean. I need caregivers who won't pinch my penis.
We went up to Balzac to explore the "New Horizons Mall". It is intended as an Asian style mall filled with independent merchants, no chain stores, no anchor tenants, nor preponderance of ladies fashion outlets. We'll see about that last one. This new mall is right across the street from Ironmills Mall, the one with Bass Pro and about a thousand ladies fashion outlets. It also has a couple of decent restaurants. We skipped the good food, deciding instead on Boston Pizza. After dinner we headed to Walmart where we picked up a hair dryer for me, plus a few more shirts. I am too large these days for my XL shirts, thus I am replacing them with XXL. It's only because of my belly.
You might have noticed that I made mention of a hair dryer. Why would I, almost bald, dedicated to the shaved head look these days, need a hair dryer? Well, not to dry my hair. The part of me we need to dry these days is my penis and general groin area. I am developing some nasty skin damage down there, damage which could get serious. So we want to make sure it gets well dried.
Part of the problem is that one of my caregivers pinched my penis while putting on my condom catheter, leaving a small cut in the skin. This is a very moist area, so that cut developed very quickly into a small, flaming red sore. That same area is also where something like a diaper rash is developing, most likely due in part to that original cut, compounded by the amount of moisture I generate down there. Hence the blow dryer.
I feel like "Tim the tool man Taylor" on that show Home Improvement; "more power". Perhaps an industrial carpet dryer from Home Depot would do the job. I need to be dry. I need to be clean. I need caregivers who won't pinch my penis.
Tuesday, 8 May 2018
All Night Pain
Pain. For a painless disease, ALS certainly has a lot of aches and pains.Pain from cramps General muscle pain. pain from pulled muscles and torn ligaments due to muscle overuse; there's lots to go round. If you've experienced this dull, full body, aching pain as many PALS do. then you know how debilitating it can be. I had a bout with it last night. It was one of the toughest nights I have ever had to endure, the pain bringing me to tears more than once, the T-3's with Codiene seeming to have little or no effect.
After about 2 hours of incredible discomfort, tossing from side to back then back to side, hoping against all hope that the pain would lessen, I finally decided to take action. My first step was the AHS Night Nurse to ask it they could administer morphine. They can't. The next step was to call 911. I konw the EMT's can do morphine. The problem is they would have to take me to hospital. I would likely not even be checked in, rather left to the treatment of the ER doctors, then released in the middle of the night with no sleep and no way to get home. So, I didn't call 911.
Instead of dialing those numbers, I grabbed my Zopiclone. I has taken one at 11:00 PM. It was now midnight. I knew that a deep sleep would quiet most of he aching in my body, allowing me to sleep through much of the pain. So I took the additional half Zopiclone pill at 12:08 AM. That's the last thing I remember. I guress it worked.
I know the Zopiclone has left me drowsy. I feel a great desire to sit in my PWC and sleep. In fact I just fell asleep with a full cup of coffee in my hand. Fortunately it spilled sideways, off the chair, mostly missing me, dampening only a small portion of my shirt. I will not have to call for help getting changed.
This exhaustion If have been feeling lately does not respond to coffee, is that, with a little chemical assistance, will defeat ALS pain, and distracts me, dissuades me from doing so much. I'm tired now. I need a nap. This sucks.
After about 2 hours of incredible discomfort, tossing from side to back then back to side, hoping against all hope that the pain would lessen, I finally decided to take action. My first step was the AHS Night Nurse to ask it they could administer morphine. They can't. The next step was to call 911. I konw the EMT's can do morphine. The problem is they would have to take me to hospital. I would likely not even be checked in, rather left to the treatment of the ER doctors, then released in the middle of the night with no sleep and no way to get home. So, I didn't call 911.
Instead of dialing those numbers, I grabbed my Zopiclone. I has taken one at 11:00 PM. It was now midnight. I knew that a deep sleep would quiet most of he aching in my body, allowing me to sleep through much of the pain. So I took the additional half Zopiclone pill at 12:08 AM. That's the last thing I remember. I guress it worked.
I know the Zopiclone has left me drowsy. I feel a great desire to sit in my PWC and sleep. In fact I just fell asleep with a full cup of coffee in my hand. Fortunately it spilled sideways, off the chair, mostly missing me, dampening only a small portion of my shirt. I will not have to call for help getting changed.
This exhaustion If have been feeling lately does not respond to coffee, is that, with a little chemical assistance, will defeat ALS pain, and distracts me, dissuades me from doing so much. I'm tired now. I need a nap. This sucks.
Monday, 7 May 2018
Laying Blame
It's been difficult for me to get up the energy to write today. I've been tired, more than normal ALS tired, over the last few days. I've slept heavily for long hours, some in bed, some in my chair. I've made limited moves to activity, the greatest being my move to go with David to Canmore on Saturday. There was the movie yesterday with Tonny too.
Someone once said I couldn't blame everything on ALS. Of course I can. I can do anything I want. It doesn't make it true though. On the other hand, statistically more of what ails me these days is ALS related than anything else, even my exhaustion. It just takes more out of me to do any single thing. I am finding that one afternoon of activity can require two or three days for recovery. It just takes longer. Nothing is easy. Nothing is fast.
I'm hoping to feel better tomorrow. I want to get out for a bit, perhaps to get those shirts I am searching for, perhaps to get something to go with the ham I am making for dinner. I have guests coming over, so if I can get that ham into the oven, they can surely take it out. I have to make plans like that these days, since my picking up strength has diminished so much over the last weeks and months.
It all wears on me, taking its toll. I've started looking for a decent electric toothbrush, something I have never owned in my life. My arms get too weary from brushing my teeth. I'm looking for an electric corkscrew. My arms are getting too weak to pull the cork from a wine bottle. I need more these days to make my life work such that I am not exhausted from ALS all the time. You might think an electric toothbrush is a nice thing to have; I don't. I don't. You might think an electric corkscrew is a cool little gadget; I don't. I blame it on ALS. I get to do that.
Someone once said I couldn't blame everything on ALS. Of course I can. I can do anything I want. It doesn't make it true though. On the other hand, statistically more of what ails me these days is ALS related than anything else, even my exhaustion. It just takes more out of me to do any single thing. I am finding that one afternoon of activity can require two or three days for recovery. It just takes longer. Nothing is easy. Nothing is fast.
I'm hoping to feel better tomorrow. I want to get out for a bit, perhaps to get those shirts I am searching for, perhaps to get something to go with the ham I am making for dinner. I have guests coming over, so if I can get that ham into the oven, they can surely take it out. I have to make plans like that these days, since my picking up strength has diminished so much over the last weeks and months.
It all wears on me, taking its toll. I've started looking for a decent electric toothbrush, something I have never owned in my life. My arms get too weary from brushing my teeth. I'm looking for an electric corkscrew. My arms are getting too weak to pull the cork from a wine bottle. I need more these days to make my life work such that I am not exhausted from ALS all the time. You might think an electric toothbrush is a nice thing to have; I don't. I don't. You might think an electric corkscrew is a cool little gadget; I don't. I blame it on ALS. I get to do that.
Sunday, 6 May 2018
Other Destinations
My past is, if not chequered, at least is varied. I started out my working career as a stockbroker. I also did options and commodities trading over the 8 years at that job. Then I hired a man I saw as a bit of a father figure. He convinced me into doing some stock trades which were questionable. I willingly did them, as it made money and I needed money. The market was down. We had to sell our home. I could barely make the rent, and Carla was a young Mom with three small children.
Those are all excuses, however. I don't know if I could have withstood the man's blandishments even if the market was good and I was making money. I did the trades. I authorised his trades, at least until the Vancouver Stock Exchange and BC Securities commission noticed the trading pattern as a kind of pump and dump. Both he and I got hauled in. He was fired; he was the principal behind the trades. I was given a three month suspension. So there I was, no job at all, unable to earn money, with mounting bills.
In the first few weeks, I took some time to look at myself. The man who permitted those trades, the man who put money before honour, that was not the man I wanted to be. I decided at that point it would never happen again in my life. Nothing was worth my good name. Nothing was worth going to jail over, missing my kids and family over. Instead I assessed my skills and decided I would get into sales training, preferably retail sales training, where I knew what I was doing and was clearly good at it.
So I started my own training practice. Things were slow, but with the help of friends and my Unemployment Insurance check, I got it off the ground. Then, about six months into things, I got a call from a fellow I knew in New York. Would I be interested in developing sales and product training for financial service firms? Sure I would. So off I went to NYC, starting off the next interesting leg of my career.
I ended up doing sales, management, and most ironically, ethics training for Wall Street firms and major banks. My work pattern was simple enough. I would get a contract to develop something. I would go to the firm's head office and various branches to see how they viewed the training objective. Then I would go home, think about it, and develop a training program for them, including printing masters of any training aids, printed material, slides as needed, sales tools, and any other paraphernalia they had asked for. I did printed training, video programs, conferences, all kinds of things.
My development method was simple for me, yet immensely frustrating for Chris Smith, my associate for a number of years. I would sit, doodling, doing little. Since he was in part dependent on my output, it meant he would sit too. Sometimes the most important thing he did with me was to toss a football around, so I could talk through something out loud, while he caught the ball and responded to ideas. Then, in a great many cases, the whole program would be ejected out of me, near fully formed, onto the keyboard and mouse, out of the printer. I would often start in the afternoon of a given day, barely notice the departure of Chris, then work all night. He would come in the next morning to find the work essentially complete, leaving him to edit and touch up as needed.
For a while, just doing this was enough. Then I got both bored with it, and curious about the new technologies emerging all around me. This process had actually begun in the mid-eighties, with a corporate implementation of a new kind of communications network, followed by my own interest in networks. This was all before the implementation of the World Wide Web standard, that which most people dub the Internet, not knowing that the Internet itself has been around since the late 1950's. But that's another story.
As my interested in technology grew along with my boredom with developing training, my focus naturally shifted. My training business faltered, and I began doing more technology consulting. This culminated in a complete shift, first of all as a Director of Technology Programs for a small training institute, then as a Deployment Manager for a small software development firm, and finally as the IT Manager for a company called Ernex, the points program manager for a number of small firms, and one really big one, the Royal Bank.
I lasted there for about three years. Then, at age 50, I started working with my brother Peter as a Project Management Trainer and Consultant. This involved delivering training programs as well as developing specialised PM training for a number of clients, including Microsoft Europe. It was a great gig, one which ultimately lead me here to Calgary, doing Project Management on contract for the Calgary Board of Education while doing the training gig on the side.
And then came ALS. All of it stopped.
Except for one thing. The constant in virtually all my work has been travel. As a broker, I didn't travel much; once or twice to Toronto and on the occasional sales junket. As a trainer for Wall Street, I travelled extensively, often as much as one or two weeks a month. While working in my IT management roles, there were still the occasional bits of travel, but not as much as I would have liked. However the need for travel blossomed, even exploded, while working with my brother, Peter. His sponsorship took me to the UK, much of Europe, the Middle East, South Africa, and all over North America.
After ALS, I have continued to travel as much as I can. I've been all around the US, across Canada twice in my truck, and done several road trips with David. Cuba, Mexico, and Hawaii have all made the list. It's become much more difficult in the last year or so. Now I have to have a Care Aide with me if I even want to go overnight somewhere.
Still, if I could travel more, I would. Alas I have neither the funds nor the Aide, so until at least one of those problems is solved, I am stuck with day trips, in need of help for even the simplest of voyage. I am ever grateful that David and others will take me in the van. Even a short trip is better than sitting at home, looking out my window. Even the smallest of rides can turn into an adventure in my mind as I remember places I have been, things I have seen, people I have travelled with.
Life is a journey, not a destination.To say you have arrived is to miss completely the other destinations open to you. I want to see those other destinations.
Those are all excuses, however. I don't know if I could have withstood the man's blandishments even if the market was good and I was making money. I did the trades. I authorised his trades, at least until the Vancouver Stock Exchange and BC Securities commission noticed the trading pattern as a kind of pump and dump. Both he and I got hauled in. He was fired; he was the principal behind the trades. I was given a three month suspension. So there I was, no job at all, unable to earn money, with mounting bills.
In the first few weeks, I took some time to look at myself. The man who permitted those trades, the man who put money before honour, that was not the man I wanted to be. I decided at that point it would never happen again in my life. Nothing was worth my good name. Nothing was worth going to jail over, missing my kids and family over. Instead I assessed my skills and decided I would get into sales training, preferably retail sales training, where I knew what I was doing and was clearly good at it.
So I started my own training practice. Things were slow, but with the help of friends and my Unemployment Insurance check, I got it off the ground. Then, about six months into things, I got a call from a fellow I knew in New York. Would I be interested in developing sales and product training for financial service firms? Sure I would. So off I went to NYC, starting off the next interesting leg of my career.
I ended up doing sales, management, and most ironically, ethics training for Wall Street firms and major banks. My work pattern was simple enough. I would get a contract to develop something. I would go to the firm's head office and various branches to see how they viewed the training objective. Then I would go home, think about it, and develop a training program for them, including printing masters of any training aids, printed material, slides as needed, sales tools, and any other paraphernalia they had asked for. I did printed training, video programs, conferences, all kinds of things.
My development method was simple for me, yet immensely frustrating for Chris Smith, my associate for a number of years. I would sit, doodling, doing little. Since he was in part dependent on my output, it meant he would sit too. Sometimes the most important thing he did with me was to toss a football around, so I could talk through something out loud, while he caught the ball and responded to ideas. Then, in a great many cases, the whole program would be ejected out of me, near fully formed, onto the keyboard and mouse, out of the printer. I would often start in the afternoon of a given day, barely notice the departure of Chris, then work all night. He would come in the next morning to find the work essentially complete, leaving him to edit and touch up as needed.
For a while, just doing this was enough. Then I got both bored with it, and curious about the new technologies emerging all around me. This process had actually begun in the mid-eighties, with a corporate implementation of a new kind of communications network, followed by my own interest in networks. This was all before the implementation of the World Wide Web standard, that which most people dub the Internet, not knowing that the Internet itself has been around since the late 1950's. But that's another story.
As my interested in technology grew along with my boredom with developing training, my focus naturally shifted. My training business faltered, and I began doing more technology consulting. This culminated in a complete shift, first of all as a Director of Technology Programs for a small training institute, then as a Deployment Manager for a small software development firm, and finally as the IT Manager for a company called Ernex, the points program manager for a number of small firms, and one really big one, the Royal Bank.
I lasted there for about three years. Then, at age 50, I started working with my brother Peter as a Project Management Trainer and Consultant. This involved delivering training programs as well as developing specialised PM training for a number of clients, including Microsoft Europe. It was a great gig, one which ultimately lead me here to Calgary, doing Project Management on contract for the Calgary Board of Education while doing the training gig on the side.
And then came ALS. All of it stopped.
Except for one thing. The constant in virtually all my work has been travel. As a broker, I didn't travel much; once or twice to Toronto and on the occasional sales junket. As a trainer for Wall Street, I travelled extensively, often as much as one or two weeks a month. While working in my IT management roles, there were still the occasional bits of travel, but not as much as I would have liked. However the need for travel blossomed, even exploded, while working with my brother, Peter. His sponsorship took me to the UK, much of Europe, the Middle East, South Africa, and all over North America.
After ALS, I have continued to travel as much as I can. I've been all around the US, across Canada twice in my truck, and done several road trips with David. Cuba, Mexico, and Hawaii have all made the list. It's become much more difficult in the last year or so. Now I have to have a Care Aide with me if I even want to go overnight somewhere.
Still, if I could travel more, I would. Alas I have neither the funds nor the Aide, so until at least one of those problems is solved, I am stuck with day trips, in need of help for even the simplest of voyage. I am ever grateful that David and others will take me in the van. Even a short trip is better than sitting at home, looking out my window. Even the smallest of rides can turn into an adventure in my mind as I remember places I have been, things I have seen, people I have travelled with.
Life is a journey, not a destination.To say you have arrived is to miss completely the other destinations open to you. I want to see those other destinations.
Saturday, 5 May 2018
Ramblin' On
My shoulder still hurts. It's nowhere near as bad as it was before the cortisone shot, yet there is this near constant dull aching pain. It's bad enough that I continue to take the T3 painkillers. It still creeps up my neck to the base of my head, although it seems to be gone almost completely in my arm itself. It's only in the core of the joint where this ache resides.
Is this normal, this continuing pain after a cortisone shot? I wonder how much of this slow effect is related to having ALS. All? Some? None? Others who have this treatment talk about miraculous effects, where their pain is gone almost immediately. I know that some of that immediate effect is the freezing used to numb the joint while the doctor injects the cortisone. He himself told me I would have no pain in that shoulder, then the freezing would wear off leaving me with some possible pain, but witnin a few days I should be fine.
The injection was Monday. It's now Saturday. On Monday I am going to see my Family Doctor. Perhaps by then the injection will be working as expected, so we will have nothing to discuss but my ongoing battle with infection. I think I might be developing a resistance to the anti-biotic I am taking right now. Even after another five days on it, there are still signs of infection in my urine. It's not bad; in a healthy person the sediment I produce irregularly would be waved off as nothing, as long as my urine wasn't cloudy. In my situation, that sediment seems to be a precursor.
Of course it would help if I drank more water. Today I'm at a half litre of water and a pint of beer. I didn't even finish my coffee this morning, so that doesn't count at all. I'll drink another half litre before my night HCA, Kabira, arrives to put me to bed. It will be better, but not good enough. I wonder if the water will impact the pain?
Is this normal, this continuing pain after a cortisone shot? I wonder how much of this slow effect is related to having ALS. All? Some? None? Others who have this treatment talk about miraculous effects, where their pain is gone almost immediately. I know that some of that immediate effect is the freezing used to numb the joint while the doctor injects the cortisone. He himself told me I would have no pain in that shoulder, then the freezing would wear off leaving me with some possible pain, but witnin a few days I should be fine.
The injection was Monday. It's now Saturday. On Monday I am going to see my Family Doctor. Perhaps by then the injection will be working as expected, so we will have nothing to discuss but my ongoing battle with infection. I think I might be developing a resistance to the anti-biotic I am taking right now. Even after another five days on it, there are still signs of infection in my urine. It's not bad; in a healthy person the sediment I produce irregularly would be waved off as nothing, as long as my urine wasn't cloudy. In my situation, that sediment seems to be a precursor.
Of course it would help if I drank more water. Today I'm at a half litre of water and a pint of beer. I didn't even finish my coffee this morning, so that doesn't count at all. I'll drink another half litre before my night HCA, Kabira, arrives to put me to bed. It will be better, but not good enough. I wonder if the water will impact the pain?
Friday, 4 May 2018
More From Yesterday
I wrote this yesterday in response to a comment about yesterday's blog post. Yesterday's post has a lot of frustration behind it, frustration that mostly I deal with. Sometimes it gets to be too much, so it squirts out sideways. I am so tired of living with ALS, yet I cannot bring myself to end my life. So here I am, once again frustrated.
Most of the upset and anger is around organization. When I ask for things to be done a specific way, I generally have a good reason, although it may be below the conciousness of active discussion; I probably feel it more than know it. If it seems like I am micro-managing, what I am really doing is trying to keep the pain and exhaustion, the frustration, out of my life. Sometimes what seems to others to be me micro-managing is really me trying to have at least a modicum of control over my own life. I've lost it almost everywhere else. Micro-managing is not what I am doing; what I am doing is trying to have impact in my own life, and trying to keep my distress to a minimum.
There are a lot of things where it doesn't matter that much to me how it is done, a lot of things where I don't give a rat's ass as to the result. These fall into two categories; things I have never really worried about, and things where I have lost so much ability that any concern on my part is irrelevant. Then there are the things that matter, either for emotional reasons, or for physical reasons. They are mostly fairly self-evident; the organizational stuff, and the things which make up a part of my personal identity.
Take for example how my laundry is folded. I used to have a way, a method of folding. Then Katherine came along and she started doing it differently. That was fine with me. Then my HCA's added their own twist to the process; no worries. These days I can hardly fold laundry myself. The only thing I worry about is how my pericare towels are folded, and that's only because they have to hang on my M-rail, so I want them folded lengthwise first. I just don't care that much about laundry folding, and I never have.
Next, take the example of how my wine bottles are stored. I like them stored a certain way, so much so that if I see them stored differently, I will re-arrange them to put them in order, a truly non-trivial task for me. Some people think this is just me being fussy, even silly. Some ignore me altogether, just putting them in a box without regard to sorting order. It's not just one person; there are many who think I am micro-managing the bottles. In some ways this might be true, especially for them.
They just see a bottle as a bottle. I, on the other hand, see the bottle as part of the complete presentation of the wine. I want my bottles consistent for a given batch of wine. I want the labels straight. I want the caps consistent. This really matters to me; it really, really matters. So I sort the bottles with their own types. That way I know how many empties I have of a given type, so that when I bottle, I know what I need, what I have to buy. I also know if I am going to have to suck it up and accept that some won't match.
Now take something like how the dishwasher is loaded. I don't care. I used to care, but now I neither load nor unload the dishwasher. What's interesting to me is how much some other people care about it. I fully understand why they care. They want the dishes clean, something I neither have to worry about nor resolve. If I get a dirty dish, I just put it in the sink. I don't have to wash it, or put it back in the dishwasher. I can't. I have lost so much ability in this regard that my thoughts and needs are no longer relevant.
Finally there are those really difficult situations, the sometimes yes and sometimes no situations. I care about how my food is prepared, but not so much that I am completely unmovable on the subject. It matters to me, yet I can, in most cases, put that aside, be grateful that someone is cooking dinner for me. Sometimes a joke doesn't bother me while other times it can cut right to the bone. I blame this all on my variable and volatile emotional state.
This is all part of living with ALS, not just for me but for those around me. I regret it. I have limited ability to manage it. I have to live with it. No choice.
Most of the upset and anger is around organization. When I ask for things to be done a specific way, I generally have a good reason, although it may be below the conciousness of active discussion; I probably feel it more than know it. If it seems like I am micro-managing, what I am really doing is trying to keep the pain and exhaustion, the frustration, out of my life. Sometimes what seems to others to be me micro-managing is really me trying to have at least a modicum of control over my own life. I've lost it almost everywhere else. Micro-managing is not what I am doing; what I am doing is trying to have impact in my own life, and trying to keep my distress to a minimum.
There are a lot of things where it doesn't matter that much to me how it is done, a lot of things where I don't give a rat's ass as to the result. These fall into two categories; things I have never really worried about, and things where I have lost so much ability that any concern on my part is irrelevant. Then there are the things that matter, either for emotional reasons, or for physical reasons. They are mostly fairly self-evident; the organizational stuff, and the things which make up a part of my personal identity.
Take for example how my laundry is folded. I used to have a way, a method of folding. Then Katherine came along and she started doing it differently. That was fine with me. Then my HCA's added their own twist to the process; no worries. These days I can hardly fold laundry myself. The only thing I worry about is how my pericare towels are folded, and that's only because they have to hang on my M-rail, so I want them folded lengthwise first. I just don't care that much about laundry folding, and I never have.
Next, take the example of how my wine bottles are stored. I like them stored a certain way, so much so that if I see them stored differently, I will re-arrange them to put them in order, a truly non-trivial task for me. Some people think this is just me being fussy, even silly. Some ignore me altogether, just putting them in a box without regard to sorting order. It's not just one person; there are many who think I am micro-managing the bottles. In some ways this might be true, especially for them.
They just see a bottle as a bottle. I, on the other hand, see the bottle as part of the complete presentation of the wine. I want my bottles consistent for a given batch of wine. I want the labels straight. I want the caps consistent. This really matters to me; it really, really matters. So I sort the bottles with their own types. That way I know how many empties I have of a given type, so that when I bottle, I know what I need, what I have to buy. I also know if I am going to have to suck it up and accept that some won't match.
Now take something like how the dishwasher is loaded. I don't care. I used to care, but now I neither load nor unload the dishwasher. What's interesting to me is how much some other people care about it. I fully understand why they care. They want the dishes clean, something I neither have to worry about nor resolve. If I get a dirty dish, I just put it in the sink. I don't have to wash it, or put it back in the dishwasher. I can't. I have lost so much ability in this regard that my thoughts and needs are no longer relevant.
Finally there are those really difficult situations, the sometimes yes and sometimes no situations. I care about how my food is prepared, but not so much that I am completely unmovable on the subject. It matters to me, yet I can, in most cases, put that aside, be grateful that someone is cooking dinner for me. Sometimes a joke doesn't bother me while other times it can cut right to the bone. I blame this all on my variable and volatile emotional state.
This is all part of living with ALS, not just for me but for those around me. I regret it. I have limited ability to manage it. I have to live with it. No choice.
Thursday, 3 May 2018
It's More Than You Think
To say that ALS has changed me would be both trite and seemingly self-evident. Clearly it has changed me. What most people don't see, or seemingly understand, is that it has changed me in ways that are not merely physical. It has changed me in ways besides putting me into a wheelchair, stealing my muscles, ladening me with constant exhaustion. In fact it is those evident changes which drive some of the not-so-evident changes.
For starters, I am a lot more sensitive to a certain group of comments or humour. For example, I don't really worry much about death or dying jokes, even ones focused on ALS and how impacts me. Everybody is going to die; most of these jokes could be applied to any number of people, and ultimately to all of us. On the other hand, comments about my need to "micro-manage", particularly with respect to processes in my kitchen, hit me very hard, be they true or not.
The reality is that I have lost a great deal thanks to ALS. One of the most distressing areas of loss for me is my ability in the kitchen. Not only am I less able to craft meals as I once was, I am also near completely unable to create new dishes, or experiment with new tastes and textures in food. This is plain and simply because I am physically unable to do the tasks or withstand the spices or flavours. I just can't do it. My reality has changed. So has my emotional response to that reality; remember, my body has changed, my mind is playing constant catch-up. Any commentary in this area is deeply unfunny to me, as it mocks a loss which is mine, and mine alone.
I have to decide, as do those who are in my kitchen, if people are there to do their own thing, prepare food on their own, or if they are there as substitutes for my hands and arms. If you are there to do something on your own, it had best not reflect something I like to make. It had best be a creation new to my kitchen, or at least new to me, such that my wants and needs don't apply. On the other hand, if you are in my kitchen making something in my stead, it means you are working as my hands and arms, doing my work for me because I can't do it.
That means doing it the way I want it done, so I can at least claim credit for being the creator. At a minimum, it might mean a cooperation; at worst there is no doubt that I will "micro-manage". It means chopping things the way I want them chopped, spicing things the way I want them spiced, serving things the way I want them served. If you want to call that micro-management, so be it. You clearly don't understand what is happening. If you threaten me with "if you don't like the way I do it, do it yourself", then you are just being unnecessarily cruel. The only reason I ask for help is because I can't do it, because ALS has ripped away this ability, once a core part of my daily life.
In this regard, my strength of personal self has changed. I feel deeply vulnerable in my disability, distastefully at the mercy of those who have lost nothing like what I have lost. Some say I just have to get used to it, yet they have never been in this place, where each day is a get-used-to-it kind of thing. They have never had their ability near violently ripped away. If you mock me, if you "tease" me, if you scold me, then you really don't understand what it is like to be here, to feel this kind of helplessness, to be at the mercy of ALS and change.
If you want to be kind to me, truly kind; if you want be be a friend to me, a true friend; if you want to be helpful to me, truly helpful; start by thinking about what it must be like to have been forced to change so profoundly, both in body and mind. Think about losing your physical ability, yet all the while your mind is functioning fully, demanding that your body perform, anxiety riddled because you can't, hating it constantly.
Each day, each and every day, I have a moment; a moment where I say to myself "why the hell do I bother". Each day, each and every day, I have a moment; a moment where I just want it all to stop, where death seems reasonable right now. I beg of you, please don't be the one who brings that into my day. This is the greatest cut of all, the most powerful betrayal, failing to understand how dramatically my feelings have changed along with my body. ALS is destroying more than my muscles.
For starters, I am a lot more sensitive to a certain group of comments or humour. For example, I don't really worry much about death or dying jokes, even ones focused on ALS and how impacts me. Everybody is going to die; most of these jokes could be applied to any number of people, and ultimately to all of us. On the other hand, comments about my need to "micro-manage", particularly with respect to processes in my kitchen, hit me very hard, be they true or not.
The reality is that I have lost a great deal thanks to ALS. One of the most distressing areas of loss for me is my ability in the kitchen. Not only am I less able to craft meals as I once was, I am also near completely unable to create new dishes, or experiment with new tastes and textures in food. This is plain and simply because I am physically unable to do the tasks or withstand the spices or flavours. I just can't do it. My reality has changed. So has my emotional response to that reality; remember, my body has changed, my mind is playing constant catch-up. Any commentary in this area is deeply unfunny to me, as it mocks a loss which is mine, and mine alone.
I have to decide, as do those who are in my kitchen, if people are there to do their own thing, prepare food on their own, or if they are there as substitutes for my hands and arms. If you are there to do something on your own, it had best not reflect something I like to make. It had best be a creation new to my kitchen, or at least new to me, such that my wants and needs don't apply. On the other hand, if you are in my kitchen making something in my stead, it means you are working as my hands and arms, doing my work for me because I can't do it.
That means doing it the way I want it done, so I can at least claim credit for being the creator. At a minimum, it might mean a cooperation; at worst there is no doubt that I will "micro-manage". It means chopping things the way I want them chopped, spicing things the way I want them spiced, serving things the way I want them served. If you want to call that micro-management, so be it. You clearly don't understand what is happening. If you threaten me with "if you don't like the way I do it, do it yourself", then you are just being unnecessarily cruel. The only reason I ask for help is because I can't do it, because ALS has ripped away this ability, once a core part of my daily life.
In this regard, my strength of personal self has changed. I feel deeply vulnerable in my disability, distastefully at the mercy of those who have lost nothing like what I have lost. Some say I just have to get used to it, yet they have never been in this place, where each day is a get-used-to-it kind of thing. They have never had their ability near violently ripped away. If you mock me, if you "tease" me, if you scold me, then you really don't understand what it is like to be here, to feel this kind of helplessness, to be at the mercy of ALS and change.
If you want to be kind to me, truly kind; if you want be be a friend to me, a true friend; if you want to be helpful to me, truly helpful; start by thinking about what it must be like to have been forced to change so profoundly, both in body and mind. Think about losing your physical ability, yet all the while your mind is functioning fully, demanding that your body perform, anxiety riddled because you can't, hating it constantly.
Each day, each and every day, I have a moment; a moment where I say to myself "why the hell do I bother". Each day, each and every day, I have a moment; a moment where I just want it all to stop, where death seems reasonable right now. I beg of you, please don't be the one who brings that into my day. This is the greatest cut of all, the most powerful betrayal, failing to understand how dramatically my feelings have changed along with my body. ALS is destroying more than my muscles.
Wednesday, 2 May 2018
Tuesday, 1 May 2018
Remembering Grandpa
Orson, my grandson, has returned to take up the mantle of shark once again. After a couple of days with his other grandparents, he and family are here for another day and a half, leaving for the coast on Thursday morning well before I am awake. While Charlotte plays quietly in the bedroom with her Lego, Orson is wearing the shark hat. He's very cute, as only a 2 1/2 year old can be.
Oddly enough both of the children are playing quietly. Meaghan and Lewis are getting a rest. I remember those years of having young children, always on the go, stressed, tired most of the time. Carla, my ex-wife, did most of the heavy lifting with the kids and home. I was working, often away on business trips, trying to make enough to keep us going.
As I look at my grandchildren, I wonder what they will remember of me. Certainly Charlotte, the oldest of all of them at seven, will remember me as an individual. I am also certain that her Mom, my daughter Meaghan, will stoke that memory, as she will for my grandson Orson as well. Their memories will be sustained by a few photos here and there.
The thing is, they will never remember me without ALS. They have no knowledge of me as a strong man, someone who could sail a boat or drive a truck or climb a hillside or even take them to the park and play. I remember my Grandfather. I remember his laughter, his solid nature. Yet I have almost no memory of my Dad's Dad, my paternal greandfather. He is but a dark vision on the distant horizon of my youngest days.
It doesn't really matter what they remember, as long as they remember it with happy feelings, as long as those memories include smiles, laughter, adventure, fun. Wheelchair or not, what I really want is for them to remember that I loved them, that I cared about them, that they mattered to me. Everything else is just the wrapping paper torn off of a Christmas gift, tossed to the side to get at the real treasure inside. I want them to remember that, the treasure.
Oddly enough both of the children are playing quietly. Meaghan and Lewis are getting a rest. I remember those years of having young children, always on the go, stressed, tired most of the time. Carla, my ex-wife, did most of the heavy lifting with the kids and home. I was working, often away on business trips, trying to make enough to keep us going.
As I look at my grandchildren, I wonder what they will remember of me. Certainly Charlotte, the oldest of all of them at seven, will remember me as an individual. I am also certain that her Mom, my daughter Meaghan, will stoke that memory, as she will for my grandson Orson as well. Their memories will be sustained by a few photos here and there.
The thing is, they will never remember me without ALS. They have no knowledge of me as a strong man, someone who could sail a boat or drive a truck or climb a hillside or even take them to the park and play. I remember my Grandfather. I remember his laughter, his solid nature. Yet I have almost no memory of my Dad's Dad, my paternal greandfather. He is but a dark vision on the distant horizon of my youngest days.
It doesn't really matter what they remember, as long as they remember it with happy feelings, as long as those memories include smiles, laughter, adventure, fun. Wheelchair or not, what I really want is for them to remember that I loved them, that I cared about them, that they mattered to me. Everything else is just the wrapping paper torn off of a Christmas gift, tossed to the side to get at the real treasure inside. I want them to remember that, the treasure.
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