Part of my emotional challenges these days are the feelings I have when asking for financial assistance from family and friends. My first feeling is embarrassment, or perhaps shame; that I should have to ask at all means that I have failed somewhere along the line in my financial planning. The next feeling is fear; I am afraid if I ask they might say no. There I would be, still without help, but now with the feelings of failure doubled. After I get up the courage to ask, I feel humbled by the whole process, brought low by my own hand.
The feeling which gets me most of all, however, is the sense inside that I must justify my spending if I plan on asking for help, that I must prove to whomever I ask that I am not spending frivolously, wasting their precious gift to me on unimportant things. The really bizarre part is that I feel like I owe an explanation of my past spending, perhaps my whole life of spending, just so they know that I didn't get here out of foolish behaviour, that I got here in spite of what looked like a pretty good financial plan for my life.
My brother Peter says this feeling is nonsense, that just because someone helps me financially does not mean I owe them a debt of responsibility or a report on how I spent their money. My brother Adam recently said that he wouldn't ask me to justify myself, but it would help him be less concerned about me if he knew I had a long term plan for my finances.
Both of these comments have helped me a great deal in dealing with this sense of shame and guilt in needing help at this time of my life. Peter reminds me that gifts should be freely given and freely accepted, without restraint, no strings attached. Adam reminds me that if I don't have some sort of plan, people will get tired of being asked, seeing no direction or thought.
I once had a very good financial plan. It was predicated on my working until 65, and perhaps part time thereafter, maybe even for another 10 years. It included a plan for a home, savings for retirement, the strategic purchase of a few "big boy" toys, and most of all a plan for my sailboat. My plan called for me to work 8 or 9 months a year, then take summers off, along with a few strategic weeks in the fall for hunting and fishing. I had it all mapped out.
Then I got ALS. It changed all my plans. It made every investment decision moot. It made mincemeat of my boat and any other toys. It made working an impossibility. That's what ALS does; it destroys all your plans, for money, for life. Please forgive me for not planning for ALS. Please forgive me if you disagree with some of my financial decisions along the way. The truth is that I am now making it up as I go along.
In some ways, the only thing I have misjudged is how long I will live. It's another cruel twist of ALS, that what you think will happen is not what actually happens. Like the rest of humanity, you don't know how long you will live. You just know it won't be as long as you would like, and longer than you can afford. And that is hard to plan for.
Monday, 7 September 2015
Sunday, 6 September 2015
I Can Be Thankful
There is an interesting thing which happens to me almost every day, usually within an hour or so of getting up, sometimes, on a particularly bad morning, later in the day after I'm up and about. It's a moment of gratitude, a feeling of good fortune, happiness which creeps into me in spite of the tremendous difficulties I face, not just first thing in the day, but throughout my day. Usually it's a couple of things which drive me to thankfulness. This morning I began to think more about it. I have a lot to be thankful for.
Even in my first moments of waking, I can be thankful for the ability I have to live in my own apartment. This sense of home and belonging is the most powerful thing in life which keeps me going, followed closely by my truck, another thing I am thankful for on a persistent basis. As I roll over in my struggle to awaken, I can be thankful that my bed, bedroom, and my whole apartment has the tools and accouterments which allow me to remain mobile, things like my M-Rail, my sling, the grab bars in my bathroom, and even the simple transfer board, a mere piece of wood, which aids in my motion from bed to wheelchair. I am thankful for the ALS Society of Alberta which provides me with so many of these tools.
As I sit and look at my feet, almost always in good shape thanks to a night in bed, I can be thankful for my compression socks, acting as they do to keep the swelling down, to keep the iridescent purple from blotching its way across my feet. I am thankful for government funding by AADL which means I only pay 25% of the cost of these socks. I can also be thankful for the quilt made by my Mom and friends covering me, keeping me warm all the while reminding me of my life at sea. I can be thankful that friends have helped me setup my room so I can get at my clothes, especially my socks, underwear and shirts, without having to get out of my bed.
When I go to the washroom, I can be thankful for the laminate flooring, so much easier than the carpet which once rested underfoot. I can be thankful for the wide doorways and large bathroom which my brother Jim, along with my friend Mike and many others, built for me to make sure I could live independently for as long as possible. I can be thankful that I had the financial resources to pay for these modifications, albeit most of it ended up on Visa. I am thankful I had a high limit on my Visa.
As I dress, I can be thankful that I can still wear regular clothing, still dress myself, still choose what I want to wear when I want to wear it. As I roll into my kitchen, I can be thankful for my stove with front control knobs, also paid for with Visa. I can be thankful for the coffee maker my Mom gave me, especially now as the energy to use my cappuccino machine leaves me. I am thankful for her gifts to me, and the gifts of so many others.
I am thankful for so much, for Katherine, for family, for friends, for the emotional and financial assistance without which I would have left this life long ago. I am thankful for my ability to move about, knowing full well that there will come a time when that will not be true. And when that happens, I will be thankful for those who help me move about, their kindness and compassion contributing once again to my will to live.
There is only one thing in my life I am not thankful for. I can leave that alone for now. There's enough good stuff that I can pretty much forget the bad stuff. And when I can't, I can be thankful for the friends and family who listen, who care, who are there for me.
Saturday, 5 September 2015
Making Martinis
When ALS was destroying my legs, my ability to walk, I noticed a pattern in the way it went about its business. I would be fine, stable for a long time, then, over the space of a few days or a week, I would experience a substantial change in my legs. I used to refer to them as "bad leg days". There was no consistency in the pattern, no minimum or maximum duration of the stable period, no measure of rapidity for the decline. It was just a sort of ebb and flow thing, where I was good for a while, usually a long while, then I was bad for a short period of time, then I was stable again with a new, lower level of normal.
This is happening in my arms now, right now. I am going through a period of rapid decline in my arm strength. They were going slowly for a long time. Now, in the last couple of weeks, I have noticed some fairly dramatic changes. I don't know how long this period of decline will last, or where things will stabilize. I just know that I am sliding right now, sliding downward in arm strength.
The obvious elements of this slide are my increasing inability to pick things up. Yesterday I went to pick up a bottle of gin. We had company over and I was making martinis. I thought to myself, as I picked up the bottle, "Gee, this thing is heavy." It's a thought which I never would have had in the past. I noticed when I made lasagna the other day that it was becoming increasingly difficult to lift up the full lasagna pan.
It kind of topped off yesterday when one of my young friends came to borrow my camping cot. I can barely pick it up anymore. Yet she, tiny little slip of a girl that she is, just grabbed it and hoisted it around like it was nothing. She said it was heavy, but it sure didn't look like it when she picked it up.
This slide will stop somewhere. I will stabilize for a while someday. Then, thanks to the joy of this disease, I will go through this process once again, losing and seeing the loss. On the other hand, I'm still here. And what the hell, someone else can carry the gin; I can still make the martinis, for now.
This is happening in my arms now, right now. I am going through a period of rapid decline in my arm strength. They were going slowly for a long time. Now, in the last couple of weeks, I have noticed some fairly dramatic changes. I don't know how long this period of decline will last, or where things will stabilize. I just know that I am sliding right now, sliding downward in arm strength.
The obvious elements of this slide are my increasing inability to pick things up. Yesterday I went to pick up a bottle of gin. We had company over and I was making martinis. I thought to myself, as I picked up the bottle, "Gee, this thing is heavy." It's a thought which I never would have had in the past. I noticed when I made lasagna the other day that it was becoming increasingly difficult to lift up the full lasagna pan.
It kind of topped off yesterday when one of my young friends came to borrow my camping cot. I can barely pick it up anymore. Yet she, tiny little slip of a girl that she is, just grabbed it and hoisted it around like it was nothing. She said it was heavy, but it sure didn't look like it when she picked it up.
This slide will stop somewhere. I will stabilize for a while someday. Then, thanks to the joy of this disease, I will go through this process once again, losing and seeing the loss. On the other hand, I'm still here. And what the hell, someone else can carry the gin; I can still make the martinis, for now.
Friday, 4 September 2015
It's Different In Other Countries
I have a swollen throat this morning. It's inside my throat, probably a swollen gland near the Eustachian tube beneath my right ear. The left side was bothering my last night, now it's the right side. I'm worried that the infection which hospitalized me recently may be making a repeat performance. My brother Adam tells me that after his recent trip here he ended up with bronchitis when he got home.
As Adam noted, as we age it takes us longer to get over these kinds of things. Add to that the generalized weakness from ALS and you have perfect recipe for long, slow recovery from almost any illness. Once again I have come to realize that ALS does not give me a free pass on the rest of life. The aches and pains of aging, the general joint trouble from a body well used over the years, life's illnesses and opportunistic infections; I am just as prone to these as any other person of my vintage.
On the other hand, I continue to be grateful for the care that I get, both from the medical system here in Canada, and from my family and friends. This morning the Home Care worker came and helped me with my shower, then did my Range of Motion exercises. As she was stretching my body, ensuring that my limbs were limber, she talked about her life in India as a young woman. She was a nurse back home, a somewhat different role than nurses here in Canada.
Her most powerful observation was that there was nobody, nor any system, to help care for aging or sick family members in India. It was up to children to care for their parents, brothers to care for sisters, wives to care for husbands, all unaided by the kinds of care systems we take for granted here in Canada. She talked for a while about how our system in Canada was so much better than that in India, especially for those who come from a poor background.
I hurt again today. My arms hurt. My fingers hurt. My legs hurt. My throat hurts. But none of that really matters, and the pain is mild compared to what I have been through in the past. What really matters is that I don't feel this pain alone. I don't carry this load by myself. I don't know what the future holds, but regardless of how I might feel, I am grateful for the present.
As Adam noted, as we age it takes us longer to get over these kinds of things. Add to that the generalized weakness from ALS and you have perfect recipe for long, slow recovery from almost any illness. Once again I have come to realize that ALS does not give me a free pass on the rest of life. The aches and pains of aging, the general joint trouble from a body well used over the years, life's illnesses and opportunistic infections; I am just as prone to these as any other person of my vintage.
On the other hand, I continue to be grateful for the care that I get, both from the medical system here in Canada, and from my family and friends. This morning the Home Care worker came and helped me with my shower, then did my Range of Motion exercises. As she was stretching my body, ensuring that my limbs were limber, she talked about her life in India as a young woman. She was a nurse back home, a somewhat different role than nurses here in Canada.
Her most powerful observation was that there was nobody, nor any system, to help care for aging or sick family members in India. It was up to children to care for their parents, brothers to care for sisters, wives to care for husbands, all unaided by the kinds of care systems we take for granted here in Canada. She talked for a while about how our system in Canada was so much better than that in India, especially for those who come from a poor background.
I hurt again today. My arms hurt. My fingers hurt. My legs hurt. My throat hurts. But none of that really matters, and the pain is mild compared to what I have been through in the past. What really matters is that I don't feel this pain alone. I don't carry this load by myself. I don't know what the future holds, but regardless of how I might feel, I am grateful for the present.
Thursday, 3 September 2015
IBC One Year Later
This weekend is the unofficial end of summer in Canada; it's arrived a few days early here in Calgary. This morning's sunshine has been replaced by a rapid plummet in temperature, grey clouds, rain, lightening, and thunder near enough to rattle the windows of my apartment. August is gone.
Last year was the August of the Ice Bucket Challenge, that organic, viral sensation which swept the globe, raising millions for ALS research, raising awareness of this illness, and, along the way, raising the ire of the naysayers, those who would rationalize away something as emotional, and fun, as the Ice Bucket Challenge. Those inside the ALS community tried to replicate it again this year, with a slogan of "Every August Until A Cure". It didn't have the same affect; it's hard to replicated that one of a kind contagion.
This is not to say that the Ice Bucket Challenge failed; quite the reverse. The money raised has already lead to important breakthroughs in research, extensive new drug trials, and a massive increase in awareness around ALS. Perhaps one of the most significant advances has been the increasing understanding of the role of the protein TDP-43 within the context of how it allows damaged neurons to repair themselves, a part of the broken process which underlies not only ALS but many other neurological illnesses.
It has long been understood that TDP-43 had something to do with failed neurons. There are studies going back nearly a decade which discuss its potential importance. The problem has been money; there wasn't enough to fund ongoing, focused research in this area. Then the Ice Bucket Challenge came along. Prosaically, a year after that money was raised, we have a major advance in understanding the relationship of TDP-43 to neuron repair, an advance which may lead to treatments not just for ALS, but for Alzheimer's, MS, and a host of other neurological disorders.
This doesn't mean something will happen right away. There will be no magic cure tomorrow. Right now, fixing the TDP-43 protein only works in mice, and what works in mice often doesn't work in people. What it does means is that there is now enough money in the pot to advance this research, something which was missing in the past. It may not be on time for me, but one day ALS and all kinds of neurological diseases will be not just treatable, but curable. That's worth a bucket of ice over my head.
Last year was the August of the Ice Bucket Challenge, that organic, viral sensation which swept the globe, raising millions for ALS research, raising awareness of this illness, and, along the way, raising the ire of the naysayers, those who would rationalize away something as emotional, and fun, as the Ice Bucket Challenge. Those inside the ALS community tried to replicate it again this year, with a slogan of "Every August Until A Cure". It didn't have the same affect; it's hard to replicated that one of a kind contagion.
This is not to say that the Ice Bucket Challenge failed; quite the reverse. The money raised has already lead to important breakthroughs in research, extensive new drug trials, and a massive increase in awareness around ALS. Perhaps one of the most significant advances has been the increasing understanding of the role of the protein TDP-43 within the context of how it allows damaged neurons to repair themselves, a part of the broken process which underlies not only ALS but many other neurological illnesses.
It has long been understood that TDP-43 had something to do with failed neurons. There are studies going back nearly a decade which discuss its potential importance. The problem has been money; there wasn't enough to fund ongoing, focused research in this area. Then the Ice Bucket Challenge came along. Prosaically, a year after that money was raised, we have a major advance in understanding the relationship of TDP-43 to neuron repair, an advance which may lead to treatments not just for ALS, but for Alzheimer's, MS, and a host of other neurological disorders.
This doesn't mean something will happen right away. There will be no magic cure tomorrow. Right now, fixing the TDP-43 protein only works in mice, and what works in mice often doesn't work in people. What it does means is that there is now enough money in the pot to advance this research, something which was missing in the past. It may not be on time for me, but one day ALS and all kinds of neurological diseases will be not just treatable, but curable. That's worth a bucket of ice over my head.
Wednesday, 2 September 2015
I Need To Relax
I'm up, dressed, and at the table. Home care has been and gone. I'm showered and stretched. Yet try as I might I cannot seem to find a good thing to say. I'm tired despite plenty of sleep last night, from around 1:00 AM to 10:30 AM, with the usual short wakenings along the way. My fingers hurt; I'm not sure if it's ALS or age related arthritis. All I know for sure is that I don't want to type.
My perfect solution to how I am feeling would be to go back to bed, to stay there for the day. Before I tumble that far, first I am going to have a cup of coffee, and perhaps something to eat. After that, we'll see. Except that I don't have the energy or enthusiasm to make the coffee or to make something to eat. I don't really see the point in it. I have plenty of stored fat on board. I can use it to keep me going.
I took my glasses off for a minute to rest my head in my hands. My arms began shaking, spasms from the weight of my head being held. I tried to shake it off, but it came back. I'm not sure what is happening today. Part of me wonders if this is still from the infection; maybe it's coming back. I hate this disease; it looks like so many different things that you can't trust your own body to tell you how it feels.
This will be a day of rest. I'm gonna sit on the couch and watch TV, maybe eat something, drink some water, some coffee too. I don't feel like having any wine or scotch; I'm just not up to it today. Nor do I really feel social. That takes energy, energy I don't have. I just need to relax.
My perfect solution to how I am feeling would be to go back to bed, to stay there for the day. Before I tumble that far, first I am going to have a cup of coffee, and perhaps something to eat. After that, we'll see. Except that I don't have the energy or enthusiasm to make the coffee or to make something to eat. I don't really see the point in it. I have plenty of stored fat on board. I can use it to keep me going.
I took my glasses off for a minute to rest my head in my hands. My arms began shaking, spasms from the weight of my head being held. I tried to shake it off, but it came back. I'm not sure what is happening today. Part of me wonders if this is still from the infection; maybe it's coming back. I hate this disease; it looks like so many different things that you can't trust your own body to tell you how it feels.
This will be a day of rest. I'm gonna sit on the couch and watch TV, maybe eat something, drink some water, some coffee too. I don't feel like having any wine or scotch; I'm just not up to it today. Nor do I really feel social. That takes energy, energy I don't have. I just need to relax.
Tuesday, 1 September 2015
From Good To Bad In One Day
One of the most annoying things about having ALS is its variability. Yesterday, I woke up feeling good. Today, I didn't wake up feeling bad so much as I woke up feeling blah. I felt weak, unable to lift myself, unwilling to go through the efforts required to sit up. I woke up at 9:30 AM, and managed to lay in bed doing nothing but dozing or checking Facebook until 2:30 PM. Then, finally, I got out of bed.
This is not to say that I go ready for my day. I took my medications, for sure. But this morning, I didn't bother to get dressed. I put on clean underwear, a habit which I am unlikely to change any time soon. Beyond that, I did not fight with compression socks. I did not wrestle with blue jeans. I did not haul a shirt over my head. I haven't yet gotten that far.
Of course, without compression socks my feet have turned a brilliant shade of purple. The swelling from edema is well underway. I've had some coffee and a couple of English Muffin sides with egg salad, so you could say I've had some lunch. But I don't feel in the least hungry; eating was automatic, not enjoyable.
I just feel crappy today; tired muscles, tired emotions, tired spirit. How is it that I can go from feeling good yesterday to feeling so crappy today? It's just the way of ALS.
This is not to say that I go ready for my day. I took my medications, for sure. But this morning, I didn't bother to get dressed. I put on clean underwear, a habit which I am unlikely to change any time soon. Beyond that, I did not fight with compression socks. I did not wrestle with blue jeans. I did not haul a shirt over my head. I haven't yet gotten that far.
Of course, without compression socks my feet have turned a brilliant shade of purple. The swelling from edema is well underway. I've had some coffee and a couple of English Muffin sides with egg salad, so you could say I've had some lunch. But I don't feel in the least hungry; eating was automatic, not enjoyable.
I just feel crappy today; tired muscles, tired emotions, tired spirit. How is it that I can go from feeling good yesterday to feeling so crappy today? It's just the way of ALS.
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