The doctors say that stress has a big impact on disease progression with ALS. The problem is that with life in general there is stress. You can do whatever you like to reduce the stress in your life but there is a base level that never goes away, both positive and negative. No matter what you do or how you do it, there will be stress events in your life. The last 24 hours are a good example of that in my life.
Yesterday morning I went to get my mail. My disability pension cheque was in the mailbox, looking all official and demanding that it be opened. So open it I did. That's when I found that 50% of my cheque had once again been deducted to meet my ex-wife's Maintenance Enforcement Order, notwithstanding the fact that our divorce agreement waives all these payments.
She implemented the order last December after finding out that I had ALS and could no longer pay her the monthly spousal support due under our initial agreement the previous July. When we settled in September, all the "missed" payments were waived and the order was to be lifted. So I contacted my lawyer who contacted the agency enforcing the order. They had just that day received their copy of our settlement agreement and have since lifted the claim against my disability cheques. However I will have to get the money back on my own. Stress.
Once I had that in hand, I moved on to my meeting with my realtor. We met to put together the offer to purchase the apartment in which I am living. This means I will be a home owner with a mortgage once again. This is an exciting prospect yet still it brings its own stress. I have to get the mortgage in place, I need to look after the legal transfer of the property, the Strata minutes need review, the renovations need engineering approval. There's a lot to do, and that lot generates its own stress.
Then I started a new project for a client in Ontario. It is an exciting project with lots of opportunity. The wonderful thing about this project is that I can do it from home and at my own pace. I will be working remotely, working from my Phoang chair! While this is a good change for me, a change that will stimulate me and keep me mentally active, once again there is a stress involved.
Then came this morning. I got a phone call from Ray, my step-father. My Mom was taken into hospital last night with chest pains. They have her there now. Fortunately I am headed for the coast on Saturday so I will see her in a couple of days. But there it is, stress. It's just a part of being alive. Hey! I'm still alive!
Thursday, 31 October 2013
Wednesday, 30 October 2013
Winston
I had a slow start this morning, perhaps because I was out last night and then couldn't get to sleep once I went to bed. Nonetheless slow starts are the rule for me, not the exception. There was one thing I noticed last night, that my arms were tired, more tired than usual. I am suspicious of this; actually I am suspicious of pretty much everything that goes on with my body these days. It's hard to tell if I am just tired because I am tired, or tired because I have ALS, or tired because ALS has decided to attack another area on my body.
It's important that I maintain some kind of balance in all this, some kind of philosophical approach that allows me to see past these little things and look at the overall picture. The challenge, of course, is that this is a disease of small increments, of slow or at least moderately slow change. The incremental losses add up but they do it at a pace where it is easy to confuse ALS with the simple effects of living and aging. I find myself continually asking which it is, aging or ALS? That's where balance and philosophical approach helps; in the long run it doesn't really matter. I can do nothing about either.
I used the term "slow start" when describing my morning. My slow starts actually start the night before. Last night is a great example. I was out at my weekly Trivia event. Last night it seemed to run a bit long and I was very tired by the end. I was not the only person feeling that tiredness; others commented on it well before I did, so I know that wasn't just me, nor was it my illness. Lots of us were tired; it's just life.
It was almost 11:00 PM by the time I got home. I did a bit of work on my computer then went to bed. Unable to sleep I turned to my constant bedtime companion these days, Winston Churchill. I am in the midst of book four of his four part series, "The History of the English Speaking Peoples". The first book was an interesting exposition on the early history of England. The second and third books should have been titled "How Winston Churchill's Family Saved the English Speaking Peoples". The fourth volume is a rather complex dissertation on the colonies, mostly the USA. Given that dear Winnie's mother was an American, I guess this makes sense.
It was about 1:00 AM before Winston did his duty and drove me to slumber. Yet at 7:30 AM I awoke, forced by nature to do what I must. I went back to sleep and suddenly it was 8:30 AM. I was still tired and dozed off again, finally waking for the day at 9:45 AM. Since then I have been busy with ablutions, dressing, phone calls and emails and now, finally, writing my blog.
All of this takes time and energy. So I am, once again, tired. That's just the way it goes. I think I will have to go to be early tonight. Perhaps Winston will work better.
It's important that I maintain some kind of balance in all this, some kind of philosophical approach that allows me to see past these little things and look at the overall picture. The challenge, of course, is that this is a disease of small increments, of slow or at least moderately slow change. The incremental losses add up but they do it at a pace where it is easy to confuse ALS with the simple effects of living and aging. I find myself continually asking which it is, aging or ALS? That's where balance and philosophical approach helps; in the long run it doesn't really matter. I can do nothing about either.
I used the term "slow start" when describing my morning. My slow starts actually start the night before. Last night is a great example. I was out at my weekly Trivia event. Last night it seemed to run a bit long and I was very tired by the end. I was not the only person feeling that tiredness; others commented on it well before I did, so I know that wasn't just me, nor was it my illness. Lots of us were tired; it's just life.
It was almost 11:00 PM by the time I got home. I did a bit of work on my computer then went to bed. Unable to sleep I turned to my constant bedtime companion these days, Winston Churchill. I am in the midst of book four of his four part series, "The History of the English Speaking Peoples". The first book was an interesting exposition on the early history of England. The second and third books should have been titled "How Winston Churchill's Family Saved the English Speaking Peoples". The fourth volume is a rather complex dissertation on the colonies, mostly the USA. Given that dear Winnie's mother was an American, I guess this makes sense.
It was about 1:00 AM before Winston did his duty and drove me to slumber. Yet at 7:30 AM I awoke, forced by nature to do what I must. I went back to sleep and suddenly it was 8:30 AM. I was still tired and dozed off again, finally waking for the day at 9:45 AM. Since then I have been busy with ablutions, dressing, phone calls and emails and now, finally, writing my blog.
All of this takes time and energy. So I am, once again, tired. That's just the way it goes. I think I will have to go to be early tonight. Perhaps Winston will work better.
Tuesday, 29 October 2013
Anger
Back in the spring, back before I tried sailing and failed, back before I went across country and returned only to discover that I had a blood clot in my left leg and road trips were now curtailed, back before the warmth of the summer and the return of winter, I wrote a blog entry about being angry. As I wrote it, I re-read it several times. It was raw, the anger visceral and real. It was harsh even to my ears, so accustomed to the harshness of my inner dialog when it comes to thinking about where my life has brought me.
The words were knife sharp, difficult, so difficult that I decided not to post it, but to save it for some future day when perhaps I would feel that anger in such a way as to be comfortable with making it public. I wanted to save the thoughts yet not expose them, to have this entry in reserve, perhaps for a day when this disease stole another thing from me.
But a funny thing has happened since then, an expected turn of events. Even though I have faced, and continue to face, losses and set backs; even though I have gone through pain and difficulty and the daily torture of this disease, I have not yet felt that anger come back to me. Even though I am certainly frustrated and struck deeply with a melancholic sense of what I no longer have or can do, I no longer feel that deep raging anger.
It's not that I have no reason for anger. After all, I can no longer get up out of my wheelchair without a lift bar; my legs have lost all their lifting strength. At times, even though I am told my upper body is normal, my arms lack the strength to pull me upwards unless everything is in the right place. My standing is machine dependent, it makes me angry when I try and fail. I know that this will progress into complete disability as time marches on. I can lay claim to anger.
It could have happened this morning. I was trying to stand up after using the toilet, trying to adjust my underwear the way normal men do, trying to do what I know will soon certainly become completely impossible. I failed. Yet when I failed I did not feel angry, I did not rage at the loss or scream at the unfairness. I simply did not have those feelings in me. It's just another day; it's just another thing.
I do not doubt that there will be days when that anger returns. But I have decided to delete that angry post, that raging blog entry. The anger is no longer in me. In the same way, and perhaps for the same reasons, defeat is neither in me as well. When this disease started, I could feel the anger and defeat as real as the floor below me when I fell, as real as the pain in my arms from lifting my now ever increasing bulk. When this disease started, I was just damned good and mad.
Now, not so much. Perhaps the anger will return, perhaps not. But for today, just for today, I am going to enjoy not feeling angry. It's a calm feeling, a good feeling.
The words were knife sharp, difficult, so difficult that I decided not to post it, but to save it for some future day when perhaps I would feel that anger in such a way as to be comfortable with making it public. I wanted to save the thoughts yet not expose them, to have this entry in reserve, perhaps for a day when this disease stole another thing from me.
But a funny thing has happened since then, an expected turn of events. Even though I have faced, and continue to face, losses and set backs; even though I have gone through pain and difficulty and the daily torture of this disease, I have not yet felt that anger come back to me. Even though I am certainly frustrated and struck deeply with a melancholic sense of what I no longer have or can do, I no longer feel that deep raging anger.
It's not that I have no reason for anger. After all, I can no longer get up out of my wheelchair without a lift bar; my legs have lost all their lifting strength. At times, even though I am told my upper body is normal, my arms lack the strength to pull me upwards unless everything is in the right place. My standing is machine dependent, it makes me angry when I try and fail. I know that this will progress into complete disability as time marches on. I can lay claim to anger.
It could have happened this morning. I was trying to stand up after using the toilet, trying to adjust my underwear the way normal men do, trying to do what I know will soon certainly become completely impossible. I failed. Yet when I failed I did not feel angry, I did not rage at the loss or scream at the unfairness. I simply did not have those feelings in me. It's just another day; it's just another thing.
I do not doubt that there will be days when that anger returns. But I have decided to delete that angry post, that raging blog entry. The anger is no longer in me. In the same way, and perhaps for the same reasons, defeat is neither in me as well. When this disease started, I could feel the anger and defeat as real as the floor below me when I fell, as real as the pain in my arms from lifting my now ever increasing bulk. When this disease started, I was just damned good and mad.
Now, not so much. Perhaps the anger will return, perhaps not. But for today, just for today, I am going to enjoy not feeling angry. It's a calm feeling, a good feeling.
Monday, 28 October 2013
Almost Normal
The subject of PALS and sex has come up again in one of the Facebook ALS groups. This is a steady topic with regular questions and comments. Perhaps the fact that it comes up so consistently is a testament to the desire of PALS to live as much of a normal life as possible. Perhaps we are just like everyone else, normal, in other words. However even though ALS does not impact sexual function, many PALS express frustration over the difficulties and challenges of maintaining a vibrant and active sex life while in the throws of this disease.
There has been very little research into the impact of ALS on sex and relationships. First of all, it's a small research cohort. Secondly, doctors are more interested in researching the etiology and physical impact of ALS, not the impact on our social and sexual interactions. In other words, just as we want a cure first and foremost, so does the medical community. Nonetheless there have been a couple of interesting studies in this area.
In a 2004 study, researchers asked 91 PALS to participate in a questionnaire study on ALS and sex. The first thing of note is that of the 91 people asked to participate, only 62 did! It just goes to show you that this is a touchy subject no matter what group you approach. In this particular study the average age was 56 with a range from 48 to 80, so it should come as no surprise that the largest single contributor to sexual dysfunction within the study group was "decreased libido". Welcome to middle age. The study also found that sexual satisfaction and participation decreased as age increased. In other words, PALS are just like everyone else.
On the other hand there are more challenges for PALS when it comes to sex. For most PALS the study found that sex was directly impacted by the general weakness from ALS as well as by physical interventions like breathing tubes and feeding tubes. Body image and the havoc wreaked by this illness also had a substantial impact, generally increasing the sexual passivity of those in the study. On a bright note, six PALS in the study were ventilated and five of them reported that they had sex at least once a month, so there is life after ventilation!
I think the most important conclusion from the study, and one that I hear about from lots of PALS online, is that "sexuality is important in ALS. The prevalence of high sexual interest, and the level of sexual satisfaction ... and sexual activity is high despite physical limitations."
Your sex life starts in your brain. PALS have that part up until the very last moment of their lives. This study simply shows that we are like everyone else, with a couple of additional challenges. We are embarrassed about our bodies, we are anxious about our performance and capacity, we have the same libido and desire as anyone else our age. In other words, we are almost normal.
There has been very little research into the impact of ALS on sex and relationships. First of all, it's a small research cohort. Secondly, doctors are more interested in researching the etiology and physical impact of ALS, not the impact on our social and sexual interactions. In other words, just as we want a cure first and foremost, so does the medical community. Nonetheless there have been a couple of interesting studies in this area.
In a 2004 study, researchers asked 91 PALS to participate in a questionnaire study on ALS and sex. The first thing of note is that of the 91 people asked to participate, only 62 did! It just goes to show you that this is a touchy subject no matter what group you approach. In this particular study the average age was 56 with a range from 48 to 80, so it should come as no surprise that the largest single contributor to sexual dysfunction within the study group was "decreased libido". Welcome to middle age. The study also found that sexual satisfaction and participation decreased as age increased. In other words, PALS are just like everyone else.
On the other hand there are more challenges for PALS when it comes to sex. For most PALS the study found that sex was directly impacted by the general weakness from ALS as well as by physical interventions like breathing tubes and feeding tubes. Body image and the havoc wreaked by this illness also had a substantial impact, generally increasing the sexual passivity of those in the study. On a bright note, six PALS in the study were ventilated and five of them reported that they had sex at least once a month, so there is life after ventilation!
I think the most important conclusion from the study, and one that I hear about from lots of PALS online, is that "sexuality is important in ALS. The prevalence of high sexual interest, and the level of sexual satisfaction ... and sexual activity is high despite physical limitations."
Your sex life starts in your brain. PALS have that part up until the very last moment of their lives. This study simply shows that we are like everyone else, with a couple of additional challenges. We are embarrassed about our bodies, we are anxious about our performance and capacity, we have the same libido and desire as anyone else our age. In other words, we are almost normal.
Sunday, 27 October 2013
Thinking And Learning.
I may have to change my road trip driving habits. Yesterday we drove from Calgary to Saskatoon, about a seven hour run. After the day of driving my legs, especially the upper right leg, simply ached in pain from being in the truck all day. In addition my right shoulder was hurting again this morning. I think this is a result of the general loss of muscle in my legs, making it difficult to hold them in place while I drive, along with the persistent use and positioning of my left arm.
My legs are at the point where they cannot hold together while sitting, In my wheelchair the bars for the footrests hold my legs in place. In my Phoang chair from Ikea, I use a pillow on either side of my legs to hold them in a position more comfortable and centered to my body than the splay they fall into while I am seated. However in the truck I use a belt to keep my legs from splaying outward, falling awkwardly into a position of discomfiture.
The challenge in the truck is that the belt is fundamentally uncomfortable; my legs want to spread apart and the belt pulls them together, while in my wheelchair and Phoang chair my legs are pushed together or held in place. The pulling on the sides of my legs and the pressure on the top from the belt causes pressure on the now dead muscles, along with pressure on what viable muscle tissue I still have in my legs. It's a very different kind of feeling than the inward push from pillows or from the footrest bars. This pressure is annoying in the short term and moderately painful in the long term.
It seems that the best way to deal with this is to stop every couple of hours and stretch out the muscles in my upper and lower legs. In addition I need to constantly re-adjust my legs while I am driving, a process that requires lifting them and shifting them using my pants as a tool for manipulation of the limbs contained therein. It's not dangerous or anything like that; it's just another thing to be done in order to keep me on the road.
I am not giving up yet, not by any stretch of the imagination. I don't have any issues with short term driving. It's only on these long road trip days that this will be an issue. It does, however, get more than a little frustrating to continually have to learn new ways to do old things. Skills and abilities that I once had are leaving me. To stay independent I am compelled to respond. On the plus side, it does keep me thinking and learning.
My legs are at the point where they cannot hold together while sitting, In my wheelchair the bars for the footrests hold my legs in place. In my Phoang chair from Ikea, I use a pillow on either side of my legs to hold them in a position more comfortable and centered to my body than the splay they fall into while I am seated. However in the truck I use a belt to keep my legs from splaying outward, falling awkwardly into a position of discomfiture.
The challenge in the truck is that the belt is fundamentally uncomfortable; my legs want to spread apart and the belt pulls them together, while in my wheelchair and Phoang chair my legs are pushed together or held in place. The pulling on the sides of my legs and the pressure on the top from the belt causes pressure on the now dead muscles, along with pressure on what viable muscle tissue I still have in my legs. It's a very different kind of feeling than the inward push from pillows or from the footrest bars. This pressure is annoying in the short term and moderately painful in the long term.
It seems that the best way to deal with this is to stop every couple of hours and stretch out the muscles in my upper and lower legs. In addition I need to constantly re-adjust my legs while I am driving, a process that requires lifting them and shifting them using my pants as a tool for manipulation of the limbs contained therein. It's not dangerous or anything like that; it's just another thing to be done in order to keep me on the road.
I am not giving up yet, not by any stretch of the imagination. I don't have any issues with short term driving. It's only on these long road trip days that this will be an issue. It does, however, get more than a little frustrating to continually have to learn new ways to do old things. Skills and abilities that I once had are leaving me. To stay independent I am compelled to respond. On the plus side, it does keep me thinking and learning.
Saturday, 26 October 2013
Ham-Fisted Driving
It's Saturday morning. The cool autumn sun is slung low in the sky, creeping its way southward day by day, straining to reach a warmth in which one can walk, or roll, with only a jacket or sweater. Soon it will snow, soon all the warmth will have drained from the sky, soon the outside air will drive us all into our heavy winter gear.
The weather forecast is calling for snow as a possibility tonight or tomorrow. The high for tomorrow could be as low as -5 degrees Celsius. It is the leading edge of winter, not quite yet fully formed. It is enough, enough to serve as a warning that the climate in which we live here on the great prairies and eastern foothills of the Rockies is moving into winter mode. I am, in fact, looking forward to this coming winter. The autumn, with all its changes, has always been a time I have enjoyed, a preparation for those days of cold when I could sit indoors and watch the cold weather beat about those who dare to engage in outdoor excursion.
I have decided to use this weekend for a two day road trip. Ricky and I are headed for Saskatoon today, not for any real reason although I want to see my friend Murray who lives there. It is a great drive, up through the farms to Drumheller, down into and then up out of the Red Deer River valley, wending further across the open prairie, past miles and miles of ranches, farms and open country. It will be a soothing drive, an easy drive with plenty to see and do along the way, as long as the weather cooperates.
Drumheller, with dinosaur bones and hoodoos, is always fun to explore. Ricky hasn't been there in quite a while so we will probably stop for a bit. The drive from Drumheller to Saskatoon is about five hours, so we should probably arrive sometime around dinner. We'll stay in a hotel overnight and then head home tomorrow.
Coming home tomorrow could be exciting. The snow will be here, or so they say. Fortunately I just put new tires on the truck, so I expect little or no trouble. The only challenge will be driving in winter weather with the hand controls. Last year I still had enough strength in my feet to drive with them. This winter I am doing it all by hand.
Driving with hand controls is difficult when it comes to things like feathering the brake or gas; hand controls are a bit "ham-fisted", a bit clumsy when it comes to the finer side of vehicle control. You tend to hig the brakes harder and accelerate more rapidly. I'll do it, I just have to take it easy and be a little bit more careful. I can do that, can't I?
The weather forecast is calling for snow as a possibility tonight or tomorrow. The high for tomorrow could be as low as -5 degrees Celsius. It is the leading edge of winter, not quite yet fully formed. It is enough, enough to serve as a warning that the climate in which we live here on the great prairies and eastern foothills of the Rockies is moving into winter mode. I am, in fact, looking forward to this coming winter. The autumn, with all its changes, has always been a time I have enjoyed, a preparation for those days of cold when I could sit indoors and watch the cold weather beat about those who dare to engage in outdoor excursion.
I have decided to use this weekend for a two day road trip. Ricky and I are headed for Saskatoon today, not for any real reason although I want to see my friend Murray who lives there. It is a great drive, up through the farms to Drumheller, down into and then up out of the Red Deer River valley, wending further across the open prairie, past miles and miles of ranches, farms and open country. It will be a soothing drive, an easy drive with plenty to see and do along the way, as long as the weather cooperates.
Drumheller, with dinosaur bones and hoodoos, is always fun to explore. Ricky hasn't been there in quite a while so we will probably stop for a bit. The drive from Drumheller to Saskatoon is about five hours, so we should probably arrive sometime around dinner. We'll stay in a hotel overnight and then head home tomorrow.
Coming home tomorrow could be exciting. The snow will be here, or so they say. Fortunately I just put new tires on the truck, so I expect little or no trouble. The only challenge will be driving in winter weather with the hand controls. Last year I still had enough strength in my feet to drive with them. This winter I am doing it all by hand.
Driving with hand controls is difficult when it comes to things like feathering the brake or gas; hand controls are a bit "ham-fisted", a bit clumsy when it comes to the finer side of vehicle control. You tend to hig the brakes harder and accelerate more rapidly. I'll do it, I just have to take it easy and be a little bit more careful. I can do that, can't I?
Friday, 25 October 2013
Growing Old
Most of my friends would likely describe me as vibrant and young at heart. Others might have different words for me but I won't go into that here, I would prefer to stick with the positive. I certainly have a busy social life, with lots to do and my group of friends includes people ranging in age from their mid 20's to their late 50's. I'm not actually the oldest in the group, but I am up there. Still, my life is active, I've been out every night this week since Sunday. I will likely be home tonight; Friday nights are always a bit slow for me. I'm not sure why, they just are.
Nonetheless, even with the sense of vibrancy and life that I have on most days, there are days when I start to feel old, old and tired. There are days, and sometimes just moments, when my years hit me and I feel their full weight. Sometimes it's just a passing feeling, a sense that I am in the final stages of my life. Other times it's a full long while where I feel this sense of being "past it", out of place in my time.
Last night is a good example. I like to go to "Name That Tune" on Thursday nights. It starts at 8:00 PM and usually runs until around 11:00 PM. Some nights we hang around afterwards for a while, talking, catching up. There are people I go with on a regular basis and besides simply having fun at the event, I like their company and companionship.
Last night was different. Last night most of the "regulars" didn't show up; there was just a couple of my regular friends, myself, and a whole table of people I didn't know. You might think this would not be a problem for me and for the bulk of the evening it wasn't. These were young folks, mostly in their late 20's and early 30's, much younger than most of my friends. I just happened that way; that's who showed up. Still, a couple of my friends were there; I wasn't flying solo.
As the evening wore on, one of my friends had to leave early and the other left our table to join another. He is also single, but only in his mid-30's, and this other table had "better prospects". So there I was, alone, knowing nobody in a table filled with people with whom I had very little in common and even less shared experience. Still, I like naming that tune and we did well in terms of the game. Socially however I was very disconnected with this group.
Then it happened. One of the young people made a very pointed comment about my age. She was trying to make a joke but failed miserably. She just made me, and pretty much everyone else, uncomfortable. I can admit my age and have no problem with it. On the other hand her failed attempt at humour really made me realize how out of place I was, and how much I missed being with my regular group of friends, the people I know and care about.
I am not a kid anymore. I am a late middle-aged man with very poor social prospects. I am growing old alone, something that almost every one of us fears. At that moment, with her thoughtless words, I felt it hit me, more strongly than I expected. At that moment, with her thoughtless words, I simply wanted to go home and give it all up. I felt old.
Nonetheless, even with the sense of vibrancy and life that I have on most days, there are days when I start to feel old, old and tired. There are days, and sometimes just moments, when my years hit me and I feel their full weight. Sometimes it's just a passing feeling, a sense that I am in the final stages of my life. Other times it's a full long while where I feel this sense of being "past it", out of place in my time.
Last night is a good example. I like to go to "Name That Tune" on Thursday nights. It starts at 8:00 PM and usually runs until around 11:00 PM. Some nights we hang around afterwards for a while, talking, catching up. There are people I go with on a regular basis and besides simply having fun at the event, I like their company and companionship.
Last night was different. Last night most of the "regulars" didn't show up; there was just a couple of my regular friends, myself, and a whole table of people I didn't know. You might think this would not be a problem for me and for the bulk of the evening it wasn't. These were young folks, mostly in their late 20's and early 30's, much younger than most of my friends. I just happened that way; that's who showed up. Still, a couple of my friends were there; I wasn't flying solo.
As the evening wore on, one of my friends had to leave early and the other left our table to join another. He is also single, but only in his mid-30's, and this other table had "better prospects". So there I was, alone, knowing nobody in a table filled with people with whom I had very little in common and even less shared experience. Still, I like naming that tune and we did well in terms of the game. Socially however I was very disconnected with this group.
Then it happened. One of the young people made a very pointed comment about my age. She was trying to make a joke but failed miserably. She just made me, and pretty much everyone else, uncomfortable. I can admit my age and have no problem with it. On the other hand her failed attempt at humour really made me realize how out of place I was, and how much I missed being with my regular group of friends, the people I know and care about.
I am not a kid anymore. I am a late middle-aged man with very poor social prospects. I am growing old alone, something that almost every one of us fears. At that moment, with her thoughtless words, I felt it hit me, more strongly than I expected. At that moment, with her thoughtless words, I simply wanted to go home and give it all up. I felt old.
Thursday, 24 October 2013
Best Before
I hear from a lot of other People with ALS, or PALS for short. There is a large and active online community of people struggling with this disease, fighting the effects on a daily basis, living their lives as best they can while beset with the challenge of loss of muscle control and viability. The one thing we all have in common, besides our illness, is that we can still type or interact with the keyboard through some other intervention. There are powerful and complex computer systems these days which can read eye movement or listen to speach and translate that into keystrokes. We can still communicate.
Unfortunately much of that communication is bad news in our situation. Many of the articles we read about ALS, many of the research reports and studies, and almost all of our health updates lean towards the negative. This is not a disease where you get good news all that often. The losses that I see in others I know will come to me. To hear from someone who was diagnosed two years before me gives me insight into what I must face in two more years.
Yet these same messages can also be messages of hope, messages describing a future that contains not death, but life. These are messages that tell of activity, vibrancy, emotional support and lives filled with love and care. These are messages of triumph, not of body but of spirit, triumph over the limitations that our lives have imposed on us, triumph over our failing state of health. These messages are of life in the face of certain deterioration unto death.
There are bad days with these messages, the loss of friends both online and in situ, other PALS who have succumbed to the inevitable outcome of ALS. There are bad days with these messages, reports of deterioration and loss, of failed care plans, of poor to nonexistent health care and support. These days, the ones with bad news, often seem to overwhelm all the other messages. They seem to be more pungent with the smell of misfortune and failure.
In all of this there is but one substantial truth. This year in Canada there will be approximately 250,000 deaths. As the inevitable outcome of life, death is a fact, a reality, in truth a necessity. For from all death springs new life, this cycle never ending. I and my fellow PALS are simply a small part of that equation, the few amongst the many, whose lives will end perhaps with more struggle, earlier than hoped, but will end nonetheless, as a part of this vast human equation. PALS are no different than anyone else; we just have a "best before" date. Still, I would like to get some good news now and again.
Unfortunately much of that communication is bad news in our situation. Many of the articles we read about ALS, many of the research reports and studies, and almost all of our health updates lean towards the negative. This is not a disease where you get good news all that often. The losses that I see in others I know will come to me. To hear from someone who was diagnosed two years before me gives me insight into what I must face in two more years.
Yet these same messages can also be messages of hope, messages describing a future that contains not death, but life. These are messages that tell of activity, vibrancy, emotional support and lives filled with love and care. These are messages of triumph, not of body but of spirit, triumph over the limitations that our lives have imposed on us, triumph over our failing state of health. These messages are of life in the face of certain deterioration unto death.
There are bad days with these messages, the loss of friends both online and in situ, other PALS who have succumbed to the inevitable outcome of ALS. There are bad days with these messages, reports of deterioration and loss, of failed care plans, of poor to nonexistent health care and support. These days, the ones with bad news, often seem to overwhelm all the other messages. They seem to be more pungent with the smell of misfortune and failure.
In all of this there is but one substantial truth. This year in Canada there will be approximately 250,000 deaths. As the inevitable outcome of life, death is a fact, a reality, in truth a necessity. For from all death springs new life, this cycle never ending. I and my fellow PALS are simply a small part of that equation, the few amongst the many, whose lives will end perhaps with more struggle, earlier than hoped, but will end nonetheless, as a part of this vast human equation. PALS are no different than anyone else; we just have a "best before" date. Still, I would like to get some good news now and again.
Wednesday, 23 October 2013
Vertical Exercise
It's a dull morning this morning, grey and gloomy, a low sheath of flat cloud covering the sky to the the horizon. Outside the cars go by, sound dampened by the moisture latent in the air, no wind to lift the leaves or brush the branches on the fir tree outside of my window, the black of the blacktop in the parking lot appearing all the denser and richer from the wetness settling on it. There is no rain, not yet, but there is the promise of rain, the threat of precipitation, not yet snow for the air is still to warm for that, but chilling enough to make one grateful for an overcoat.
Winter will be here soon. We are now one month away from the first anniversary of my diagnosis, one month away from that fateful day when my world changed so forcefully, one month away from my new birthday, for that was the day that the end of my life was born. From that day, into the chilly gloom of winter, I went forth knowing not only that I had a terrible, terminal illness, but knowing that there was nothing to be done, no hope of treatment, no chance of cure. It's coming soon, that day.
This morning has been a tough morning. I suspect I will have a few of these as I approach my fateful anniversary. I've had to rise vertical three separate times this morning, twice while dressing and once to retrieve coffee from the upper cupboard. Why is coffee in the upper cupboard? Because that's where it goes. I am not without my own small obsessions.
Rising up, in the vain imitation of standing, takes a fair bit of work and effort. First of all there are the pre-attempts, where I position myself to try but realize in the process that I am either not going to make it up or I will, worse yet, fall down in the attempt. For each vertical effort I have at least three preliminary attempts, not to mention the positioning of myself and my wheelchair along with the adjusting of the wheel locks and footrests.
Once I am relatively certain of success, I go for it, upwards and rising, grasping counters and handholds along the way to continue the vertical impulsion of my upper body, my legs simply rising along for the ride until there is enough verticality to lock my knees into place. Once up, I must continually retain a hand hold for balance, for without it the downward plummet begins within a few seconds of apogee.
Going down is easy. I just slump back into my chair. But getting up and saying up require true effort; it is a very tiring process. I only have a couple of those ups and downs in me, and then I must rest. After exercise comes exhaustion, just like everyone else. Only my exercise, my verticalling adventure, is what most of you take for granted.
Winter will be here soon. We are now one month away from the first anniversary of my diagnosis, one month away from that fateful day when my world changed so forcefully, one month away from my new birthday, for that was the day that the end of my life was born. From that day, into the chilly gloom of winter, I went forth knowing not only that I had a terrible, terminal illness, but knowing that there was nothing to be done, no hope of treatment, no chance of cure. It's coming soon, that day.
This morning has been a tough morning. I suspect I will have a few of these as I approach my fateful anniversary. I've had to rise vertical three separate times this morning, twice while dressing and once to retrieve coffee from the upper cupboard. Why is coffee in the upper cupboard? Because that's where it goes. I am not without my own small obsessions.
Rising up, in the vain imitation of standing, takes a fair bit of work and effort. First of all there are the pre-attempts, where I position myself to try but realize in the process that I am either not going to make it up or I will, worse yet, fall down in the attempt. For each vertical effort I have at least three preliminary attempts, not to mention the positioning of myself and my wheelchair along with the adjusting of the wheel locks and footrests.
Once I am relatively certain of success, I go for it, upwards and rising, grasping counters and handholds along the way to continue the vertical impulsion of my upper body, my legs simply rising along for the ride until there is enough verticality to lock my knees into place. Once up, I must continually retain a hand hold for balance, for without it the downward plummet begins within a few seconds of apogee.
Going down is easy. I just slump back into my chair. But getting up and saying up require true effort; it is a very tiring process. I only have a couple of those ups and downs in me, and then I must rest. After exercise comes exhaustion, just like everyone else. Only my exercise, my verticalling adventure, is what most of you take for granted.
Tuesday, 22 October 2013
Vehicle Restrictions
Yesterday was a wonderful day, a terrific drive up into the mountains, past rushing rivers flush with the last of the summer melt, showing that early autumn edge of frost in the shade and even the odd bit of fresh snow on some of the deeper meadows. The woods these days are wonderful, a riot of colour and rich in life, all preparing for the long months of ice and snow that lay ahead. The trees drape themselves in a mix of gold, yellow and red, with many already shorn of leafy colour, wind blown in the high cracks and crevices that are endemic to these Rocky Mountains.
The drive was not without event, in fact it started with a learning moment for me. My friend Mike, the man who was kind enough to think of me, wanting to do this drive yet not wanting to do it alone, has one of those ubiquitous small SUV's that seem to be the rage on the roads these days, a Hyundia Tucson. This particular vehicle has a higher ground clearance than a regular sedan, making it useful as you venture into the back roads and construction sites that are so often a part of Mike's work as a geotechnical engineer.
Unfortunately this higher ground clearance also means the passenger seat is higher than that of a normal sedan, just high enough that I could not do a side transfer from my wheelchair into the awaiting receptacle. The seat was just high enough, and set into the vehicle just far enough, that I would have to stand, rotate and fall into it, something I have done in similar vehicles in the past.
The problem is that "in the past" part. It is a function of the continuing slide with the use of my legs that what I could do a few weeks ago I can no longer do today. Standing is already challenging enough, yet with the help of the car door, and with the help of Mike, I managed to stand. Yes, there I was, vertical and ready to rotate and slide into the seat.
Yet this I could not do. While I can get vertical, I can no longer lift my feet enough to get them into position for the fall backwards into the seat. Nor could I rotate while all of my weight rested on both of those immobilized pods at the ends of my legs. In other words, I could get up but I could not get down. At that instant, I realized that the decline had gotten sufficient that I would have difficulty with almost any car.
I will have to come up with some sort of transfer board to get into a passenger seat from here on. In addition it will have to be a car which is roughly the same level as my wheelchair. I am sure there is something out there for this, something that will let me ride as a passenger, something that will let me continue to have the amazing road days like yesterday. In the meantime, as with yesterday, I will have to depend on my truck with its modifications whenever considering any outing. I can get into my truck; I did it yesterday and we had a fabulous drive.
The drive was not without event, in fact it started with a learning moment for me. My friend Mike, the man who was kind enough to think of me, wanting to do this drive yet not wanting to do it alone, has one of those ubiquitous small SUV's that seem to be the rage on the roads these days, a Hyundia Tucson. This particular vehicle has a higher ground clearance than a regular sedan, making it useful as you venture into the back roads and construction sites that are so often a part of Mike's work as a geotechnical engineer.
Unfortunately this higher ground clearance also means the passenger seat is higher than that of a normal sedan, just high enough that I could not do a side transfer from my wheelchair into the awaiting receptacle. The seat was just high enough, and set into the vehicle just far enough, that I would have to stand, rotate and fall into it, something I have done in similar vehicles in the past.
The problem is that "in the past" part. It is a function of the continuing slide with the use of my legs that what I could do a few weeks ago I can no longer do today. Standing is already challenging enough, yet with the help of the car door, and with the help of Mike, I managed to stand. Yes, there I was, vertical and ready to rotate and slide into the seat.
Yet this I could not do. While I can get vertical, I can no longer lift my feet enough to get them into position for the fall backwards into the seat. Nor could I rotate while all of my weight rested on both of those immobilized pods at the ends of my legs. In other words, I could get up but I could not get down. At that instant, I realized that the decline had gotten sufficient that I would have difficulty with almost any car.
I will have to come up with some sort of transfer board to get into a passenger seat from here on. In addition it will have to be a car which is roughly the same level as my wheelchair. I am sure there is something out there for this, something that will let me ride as a passenger, something that will let me continue to have the amazing road days like yesterday. In the meantime, as with yesterday, I will have to depend on my truck with its modifications whenever considering any outing. I can get into my truck; I did it yesterday and we had a fabulous drive.
Monday, 21 October 2013
Tourist On A Road Trip
Road trip day!
Yesterday evening while spending a couple of hours with John Cleese and 1,500 of his closest friends, my friend Mike asked me what I was doing today, this being Monday and all. I replied "nothing really", knowing full well that a complete basket of laundry was standing in the corner of my bedroom pleading for attention, yearning to be cleaned. Yet I said "Nothing".
So he asked if I wanted to go for a drive to Radium with him this morning, as he was headed there for work and knew I wanted to get out for a bit of a drive, to go up into the mountains. The drive from Calgary to Radium is about three hours through some of the most rugged and beautiful of the Rocky Mountains, up the Bow River Valley, past Banff and Lake Louise, through the Kootenay River gap. Radium itself is simply a small village with the most incredible hot springs, a couple of motels and some pretty amazing scenery.
"Laundry be damned", I though to myself, "this is a day to get into the mountains." I love the mountains. I love the sea too, and the prairie. In fact I love being outdoors, or at least seeing the outdoors, from pretty much every angle in this amazing country in which I get to live. This is a land of sweeping vistas and diametric differences, glued together by a common desire of its people to not get in each other's way, to respect the space and distance that we all need to get along.
Today I will be a passenger, riding along with Mike. There will be no requirement for me to watch traffic or be ready for rock falls or ice or snow, or even the odd grizzly bear or elk or moose or deer. Today I get to sit back and watch the scenery go by, to contemplate this land, rich in flora and fauna, a wealth of life clinging to the sides of these massive mountains. Today I get to be tourist, on a road trip.
Yesterday evening while spending a couple of hours with John Cleese and 1,500 of his closest friends, my friend Mike asked me what I was doing today, this being Monday and all. I replied "nothing really", knowing full well that a complete basket of laundry was standing in the corner of my bedroom pleading for attention, yearning to be cleaned. Yet I said "Nothing".
So he asked if I wanted to go for a drive to Radium with him this morning, as he was headed there for work and knew I wanted to get out for a bit of a drive, to go up into the mountains. The drive from Calgary to Radium is about three hours through some of the most rugged and beautiful of the Rocky Mountains, up the Bow River Valley, past Banff and Lake Louise, through the Kootenay River gap. Radium itself is simply a small village with the most incredible hot springs, a couple of motels and some pretty amazing scenery.
"Laundry be damned", I though to myself, "this is a day to get into the mountains." I love the mountains. I love the sea too, and the prairie. In fact I love being outdoors, or at least seeing the outdoors, from pretty much every angle in this amazing country in which I get to live. This is a land of sweeping vistas and diametric differences, glued together by a common desire of its people to not get in each other's way, to respect the space and distance that we all need to get along.
Today I will be a passenger, riding along with Mike. There will be no requirement for me to watch traffic or be ready for rock falls or ice or snow, or even the odd grizzly bear or elk or moose or deer. Today I get to sit back and watch the scenery go by, to contemplate this land, rich in flora and fauna, a wealth of life clinging to the sides of these massive mountains. Today I get to be tourist, on a road trip.
Sunday, 20 October 2013
Money And Fear
I awoke at 5:30 AM this morning in an absolute panic, deep in a pit of anxiety so real and permeative that I was unable to put it aside in order to return to sleep. The panic rose within me, upwards like vomit from a turbulent stomach, pushing me further and further into fear and wakefulness.
Money was the problem onto which this nameless creature fastened itself. My financial situation is not dire but it is not good, and all it takes is a little creative fear to turn mundane into murder, ordinary into overwhelming. Money is something I worry about these days, both for good reason and needlessly. In the small hours of this morning, needlessly won out and I simply lie there, drenched in the "what ifs" and "should haves" that make these moments all the more disturbing.
The truth is that my financial situation could be seen as anywhere from dire to magical, from disaster to excellent, depending on one simple variable. How long will I live? In a weird sort of way it is the very same question that almost all of us face, the question of outliving our money. Some of us have had a better kick at this cat, with lives focused on both partners making enough to live in current comfort and future comfort. Some of us have had decent long term outcomes in our financial plans. Others have not. I think I sit somewhere in the middle.
It is the uncertainty that is the worst factor. If I could know with some degree of certainty what my prognosis is then I could make a reasonable plan. It is true that none of us knows the number of our days. The challenge for me is that the uncertainty is amplified, driven by a fear made manifest in the unpredictability of ALS. There are days when I think I will live for many years; there are days when I think I will not. There are days when I feel I could go on for decades; there are days when next year seems unlikely. That is the terrible thing for me; I feel like I cannot make a plan.
I can choose to live as if I am going to live as long as anyone else, to live as if I will see my late golden years, to live as if there are plenty of tomorrows. Yet in doing so I must by the very nature of finance, limit my life now. In so doing, if I have only a few years then I will have wasted my opportunities for living my remaining life fully. I can choose to live as if time is short, but if I live long then my final years will be impecuneous. Of course my final years will, in all likelihood, be a time of dependency regardless. Yet still I don`t want to be a captive of poverty.
The only way for me to deal with this with any form of rationality is to live in the moment, make plans for the future but live for today. I think the only way for me to look at my future is somewhere around a five year horizon. That`s probably as good as it gets.
Money was the problem onto which this nameless creature fastened itself. My financial situation is not dire but it is not good, and all it takes is a little creative fear to turn mundane into murder, ordinary into overwhelming. Money is something I worry about these days, both for good reason and needlessly. In the small hours of this morning, needlessly won out and I simply lie there, drenched in the "what ifs" and "should haves" that make these moments all the more disturbing.
The truth is that my financial situation could be seen as anywhere from dire to magical, from disaster to excellent, depending on one simple variable. How long will I live? In a weird sort of way it is the very same question that almost all of us face, the question of outliving our money. Some of us have had a better kick at this cat, with lives focused on both partners making enough to live in current comfort and future comfort. Some of us have had decent long term outcomes in our financial plans. Others have not. I think I sit somewhere in the middle.
It is the uncertainty that is the worst factor. If I could know with some degree of certainty what my prognosis is then I could make a reasonable plan. It is true that none of us knows the number of our days. The challenge for me is that the uncertainty is amplified, driven by a fear made manifest in the unpredictability of ALS. There are days when I think I will live for many years; there are days when I think I will not. There are days when I feel I could go on for decades; there are days when next year seems unlikely. That is the terrible thing for me; I feel like I cannot make a plan.
I can choose to live as if I am going to live as long as anyone else, to live as if I will see my late golden years, to live as if there are plenty of tomorrows. Yet in doing so I must by the very nature of finance, limit my life now. In so doing, if I have only a few years then I will have wasted my opportunities for living my remaining life fully. I can choose to live as if time is short, but if I live long then my final years will be impecuneous. Of course my final years will, in all likelihood, be a time of dependency regardless. Yet still I don`t want to be a captive of poverty.
The only way for me to deal with this with any form of rationality is to live in the moment, make plans for the future but live for today. I think the only way for me to look at my future is somewhere around a five year horizon. That`s probably as good as it gets.
Saturday, 19 October 2013
A Long Process
I'm looking for a place to live. My current apartment is rented; I rented it before I was diagnosed. I love it here; it's close to shopping, close to downtown, close to the highway headed west, and easy to go to via transit. My apartment is a reasonable size, not too small nor too large, and my main window, really the balcony sliding door, faces northeast enough to get a good dose of the morning sun. I'm up on the third floor so I can see over the top of the mall across the street, enough to really enjoy the winter sunrise.
Yet seek a new home I must, for this abode has very limited bathroom access for my wheelchair. In order to get into the bathroom I must take the feet off of my wheelchair. Even then the casters on the front scrape the doorframe and the wheels on the back scape the door on the way through. This apartment also has carpet throughout, making wheeling about a challenge on occasion.
When I rented this place my landlord said "This is not a wheelchair apartment." I said "No worries, I am not planning on being in a wheelchair." Back then I didn't know I had ALS; I thought it was some sort of back injury or spinal cord injury. Then came reality.
My reality these days means I am looking for another apartment, one that either has wheelchair access or can be easily modified to ensure proper wheelchair access to bathroom, bedroom and kitchen. Yesterday my real estate agent sent me a listing, well-priced, where the apartment was on the main floor, the bedroom and kitchen were a good size, and the floors were already laminate. We wanted to see if we could modify the bathroom.
On arriving, we found that there was absolutely no wheelchair access from the street. "No worries", I said to the agent, "we can go in through the garage." Then I got to the garage and found that the entry door was 5' 9" high; my truck is 6' 2". I simply turned around and went home. We just didn't bother.
These are the challenges I face. It is not as simply as finding a place I want to live. There are all kinds of other considerations. This is going to be a longer process than I first expected.
Yet seek a new home I must, for this abode has very limited bathroom access for my wheelchair. In order to get into the bathroom I must take the feet off of my wheelchair. Even then the casters on the front scrape the doorframe and the wheels on the back scape the door on the way through. This apartment also has carpet throughout, making wheeling about a challenge on occasion.
When I rented this place my landlord said "This is not a wheelchair apartment." I said "No worries, I am not planning on being in a wheelchair." Back then I didn't know I had ALS; I thought it was some sort of back injury or spinal cord injury. Then came reality.
My reality these days means I am looking for another apartment, one that either has wheelchair access or can be easily modified to ensure proper wheelchair access to bathroom, bedroom and kitchen. Yesterday my real estate agent sent me a listing, well-priced, where the apartment was on the main floor, the bedroom and kitchen were a good size, and the floors were already laminate. We wanted to see if we could modify the bathroom.
On arriving, we found that there was absolutely no wheelchair access from the street. "No worries", I said to the agent, "we can go in through the garage." Then I got to the garage and found that the entry door was 5' 9" high; my truck is 6' 2". I simply turned around and went home. We just didn't bother.
These are the challenges I face. It is not as simply as finding a place I want to live. There are all kinds of other considerations. This is going to be a longer process than I first expected.
Friday, 18 October 2013
Ghosts In The Basement
It's Friday morning. The sun is shining and the sky is clear. Ricky has gone off to work and Rosa is here cleaning. I have my coffee and am in my chair, but soon I will be off to the vampire station to get blood drawn and tested for my PT/INR levels. It is a routine morning, very near a normal morning.
I went out last night as I do most Thursday nights, to play "Name That Tune" at a local pub. I enjoy getting out, being social, hanging with friends. I enjoy the music and dancing, yes, dancing in a wheelchair. I get to laugh and talk with people, to be active and alive. It was very near a normal Thursday evening.
On my way out of the pub the owner approached me and asked if I was the guy bitching about the handicapped parking spot. He was about 6 foot 3 inches tall, a giant from down in my wheelchair. So I looked at him and said "Yes. Come with me and I will show you why!" He followed. We went out to the parking area where my truck was parked and he started to say he really didn't like listening to people bitch about things. So I said "Just let me show you."
We talked for a moment about some of the logistics related to the challenge of even having handicapped parking. The pub is very old for Calgary, over 50 years old; it is "grandfathered" from handicapped access requirements. The building itself used to be a mortuary and there are stories about ghosts in the basement. I don't know that spending eternity in a pub is such a bad thing, unless you really want quiet nights. But if you are a ghost, do night and day matter than much, especially in a basement?
Anyway, after some chat about logistics he says "I don't see any problems with this spot." So I showed him my rather large truck and he said "Get a smaller car!" Obviously I was having none of that, so once again I said "Let me show you what it takes for me to get into and out of your parking spot."
I proceeded to show him the challenges of getting my wheelchair in and out of my truck. I showed him how I transferred onto the lift system and began to show him the wheelchair crane. Then he got excited. As with all men, we are just boys when it comes to trucks and cranes and lifts and such. It's mechanical; it's exciting. Suddenly he was onside, suddenly he saw my reality, and it was fun! It was also challenging in a small space and he saw that too.
In the end we agreed that it was an important thing to fix. He, faced with the costs and time needed to mount a sign on a metal post filled with cement, along with the hassle of getting a sign painted on the ground, assured me I had been "heard". He also said he would do it when he could, meaning in his own time and not mine.
I have two choices here. I can go to the pub each Thursday night and struggle with the parking, or I can stop going until he puts a proper handicapped spot in place. If I stop going, I stop acting as a reminder. If I keep going, maybe he will become irritated enough to make the change. I think I'll keep going.
I went out last night as I do most Thursday nights, to play "Name That Tune" at a local pub. I enjoy getting out, being social, hanging with friends. I enjoy the music and dancing, yes, dancing in a wheelchair. I get to laugh and talk with people, to be active and alive. It was very near a normal Thursday evening.
On my way out of the pub the owner approached me and asked if I was the guy bitching about the handicapped parking spot. He was about 6 foot 3 inches tall, a giant from down in my wheelchair. So I looked at him and said "Yes. Come with me and I will show you why!" He followed. We went out to the parking area where my truck was parked and he started to say he really didn't like listening to people bitch about things. So I said "Just let me show you."
We talked for a moment about some of the logistics related to the challenge of even having handicapped parking. The pub is very old for Calgary, over 50 years old; it is "grandfathered" from handicapped access requirements. The building itself used to be a mortuary and there are stories about ghosts in the basement. I don't know that spending eternity in a pub is such a bad thing, unless you really want quiet nights. But if you are a ghost, do night and day matter than much, especially in a basement?
Anyway, after some chat about logistics he says "I don't see any problems with this spot." So I showed him my rather large truck and he said "Get a smaller car!" Obviously I was having none of that, so once again I said "Let me show you what it takes for me to get into and out of your parking spot."
I proceeded to show him the challenges of getting my wheelchair in and out of my truck. I showed him how I transferred onto the lift system and began to show him the wheelchair crane. Then he got excited. As with all men, we are just boys when it comes to trucks and cranes and lifts and such. It's mechanical; it's exciting. Suddenly he was onside, suddenly he saw my reality, and it was fun! It was also challenging in a small space and he saw that too.
In the end we agreed that it was an important thing to fix. He, faced with the costs and time needed to mount a sign on a metal post filled with cement, along with the hassle of getting a sign painted on the ground, assured me I had been "heard". He also said he would do it when he could, meaning in his own time and not mine.
I have two choices here. I can go to the pub each Thursday night and struggle with the parking, or I can stop going until he puts a proper handicapped spot in place. If I stop going, I stop acting as a reminder. If I keep going, maybe he will become irritated enough to make the change. I think I'll keep going.
Thursday, 17 October 2013
Putting On Pants
When I visited the ALS Clinic recently one of the neurologists was checking out my muscle tone. After rating my upper body at 100% normal, a measurement I am willing to accept even though I know I have lost some upper body muscle and strength, primarily due to inactivity and being trapped in this chair, the neurologist went on to test my legs. My assessment? "My legs are dead." After checking them I asked what he thought and he sad "Well, it's what you were looking for, isn't it?"
I've thought about that statement a lot these last few weeks. There is no doubt that legs which were once as strong as tree trunks and arms that were lithe as pythons have diminished. There is no doubt that legs that were once capable of climbing masts and mountains, legs that could heave massive loads and pull heavy weights, are now useless. But dead?
To quote Miracle Max, my legs are "only MOSTLY dead. There's a big difference between mostly dead and all dead. Mostly dead is slightly alive." I can still wiggle my toes and with the right assistance and bracing I can still rise to a full stand. I can still adjust my legs in bed to some small degree and even though my toes are no longer strong enough to kick off overheating covers, I can still gain a bit of ground by hauling them up manually and using gravity to my benefit when readjusting.
Nonetheless, my legs are still mostly dead. When adjusting them while sleeping or sitting, I use my arms to hoist them into position, pushing and pulling and squaring them away as needed. While I am in my wheelchair, I use the leg braces to hold them in place so they don't flop sideways. I use a belt while driving to keep them together so my hips don't become uncomfortable, as there is no muscle to move them even from side to side.
I can see where this is heading too. Now, when I stand to pull up my pants in the mornings, I can no longer retain that standing position without holding on to something. I pull myself vertical using a combination of my wheelchair and the M-rail on my bed, bracing myself on the dresser top once I get there. Once up, I am wobbly, very unsteady. Pulling up my pants is challenging; I only have one hand to work with and pants cannot defy gravity just as I cannot.
Through this whole "standing" process, I slowly slump, my legs being unable to provide sufficient muscle even for the lightest of balancing activities. Yet here I am, still standing. With a fair bit of concentration I can let go of the M-rail and "free stand" for a couple of moments, usually just barely long enough to finalize the positioning of my pant tops and do up the button and zipper. Sometimes I don't make it and am compelled to do this job from a sitting position.
Even with all this, I notice, week after week, the slight declines, the ever decreasing ability. For example I no longer stand to put on my underwear; I do it while seated now. This is because I cannot bend over to pick them up, and of course there is absolutely no leg lifting for me at all. Eventually I will lose all ability to stand. Then I will just learn to do things differently, and keep going. Then perhaps I will say "completely dead".
I've thought about that statement a lot these last few weeks. There is no doubt that legs which were once as strong as tree trunks and arms that were lithe as pythons have diminished. There is no doubt that legs that were once capable of climbing masts and mountains, legs that could heave massive loads and pull heavy weights, are now useless. But dead?
To quote Miracle Max, my legs are "only MOSTLY dead. There's a big difference between mostly dead and all dead. Mostly dead is slightly alive." I can still wiggle my toes and with the right assistance and bracing I can still rise to a full stand. I can still adjust my legs in bed to some small degree and even though my toes are no longer strong enough to kick off overheating covers, I can still gain a bit of ground by hauling them up manually and using gravity to my benefit when readjusting.
Nonetheless, my legs are still mostly dead. When adjusting them while sleeping or sitting, I use my arms to hoist them into position, pushing and pulling and squaring them away as needed. While I am in my wheelchair, I use the leg braces to hold them in place so they don't flop sideways. I use a belt while driving to keep them together so my hips don't become uncomfortable, as there is no muscle to move them even from side to side.
I can see where this is heading too. Now, when I stand to pull up my pants in the mornings, I can no longer retain that standing position without holding on to something. I pull myself vertical using a combination of my wheelchair and the M-rail on my bed, bracing myself on the dresser top once I get there. Once up, I am wobbly, very unsteady. Pulling up my pants is challenging; I only have one hand to work with and pants cannot defy gravity just as I cannot.
Through this whole "standing" process, I slowly slump, my legs being unable to provide sufficient muscle even for the lightest of balancing activities. Yet here I am, still standing. With a fair bit of concentration I can let go of the M-rail and "free stand" for a couple of moments, usually just barely long enough to finalize the positioning of my pant tops and do up the button and zipper. Sometimes I don't make it and am compelled to do this job from a sitting position.
Even with all this, I notice, week after week, the slight declines, the ever decreasing ability. For example I no longer stand to put on my underwear; I do it while seated now. This is because I cannot bend over to pick them up, and of course there is absolutely no leg lifting for me at all. Eventually I will lose all ability to stand. Then I will just learn to do things differently, and keep going. Then perhaps I will say "completely dead".
Wednesday, 16 October 2013
Choices
It is possible to have a rich and full life even when faced with the terminality of something like ALS. It is possible to find meaning in days where there could be little but emptiness. It is possible to find focus when there is nothing on the horizon on which to focus. I know this is true.
Even armed with the knowledge the battle of keeping myself in reasonable spirits in the face of this pernicious illness is just plain hard. It is fought through toughness of spirit and toughness of mind. It is fought, again and again, in small battles with small victories, knowing full well that the ultimate battle will be lost to me. Nobody lives forever, this is the truth of life for me and for everyone else. I just have a different path to that last battle.
Along that path, through the days of living and dying, I get to choose. I can choose the way I see life, and death. I get to choose my approach to living that life. I get to choose to be happy, or miserable. I get to choose what path to take. That ability to choose, that ability to decide, this is the most empowering of all things. The ability to say "I will" or I won't" is the single greatest element in making me strong.
I did not choose this disease; it has chosen me. I did not choose to lose my legs, I am not choosing to lose my diaphragm. When my arms and hands fail me, it will not be my choice. What I can choose is how I live with it, how I work with it, how I manage my limitations and challenges in the face of this impediment. I can, at least figuratively, climb this mountain in any way I choose.
My choice lies in how I respond, in how I approach these changes. Win, lose or draw, these changes will come. They are inevitable, unstoppable. But it is not my body that decides how I live, it is my mind. I will live as I choose, and choose how I live.
Even armed with the knowledge the battle of keeping myself in reasonable spirits in the face of this pernicious illness is just plain hard. It is fought through toughness of spirit and toughness of mind. It is fought, again and again, in small battles with small victories, knowing full well that the ultimate battle will be lost to me. Nobody lives forever, this is the truth of life for me and for everyone else. I just have a different path to that last battle.
Along that path, through the days of living and dying, I get to choose. I can choose the way I see life, and death. I get to choose my approach to living that life. I get to choose to be happy, or miserable. I get to choose what path to take. That ability to choose, that ability to decide, this is the most empowering of all things. The ability to say "I will" or I won't" is the single greatest element in making me strong.
I did not choose this disease; it has chosen me. I did not choose to lose my legs, I am not choosing to lose my diaphragm. When my arms and hands fail me, it will not be my choice. What I can choose is how I live with it, how I work with it, how I manage my limitations and challenges in the face of this impediment. I can, at least figuratively, climb this mountain in any way I choose.
My choice lies in how I respond, in how I approach these changes. Win, lose or draw, these changes will come. They are inevitable, unstoppable. But it is not my body that decides how I live, it is my mind. I will live as I choose, and choose how I live.
Tuesday, 15 October 2013
Paradise
It's another beautiful morning here in Calgary, the blue sky running without interruption to a horizon gently settled in an almost invisible soft white, the air still and cool, the sun blazing in through my living room window at the perfect angle, oblique and filtered by the curtains just enough to shade my view yet broad and clear enough to light every corner, the warmth already making it just uncomfortable enough for me to think of opening the sliding patio door, even though the temperature outside is hovering around the freezing mark.
I remember being in Hawaii shortly after I got married. The girl who was my wife was, even then, an enthusiastic shopper. She was not a buyer, just a shopper. She could spend hours in a store and yet come away having spent nothing more than time. We were in Waikiki, standing on a sidewalk, exploring the local shops when a downpour fell, a burst of rain thunderous and biblical, flooding the streets, overwhelming the drains, running up onto the sidewalks pushing the refuse of the gutters along with it. It was a juxtaposition, this clear and warm water from the skies and this dirty dampness at our feet.
By way of escape we dashed into a small souvenir shop, a T-shirt shop, one of the ubiquitous small shops that forever line the streets of that tourist mecca, offering useless trinkets and shirts guaranteed to last no longer than a week past the last day of your vacation. That's when I saw it, the t-shirt with the ultimate reminder of life, whether here or there, and the way we must all face our realities. The slogan on the t-shirt said "Just another shitty day in paradise".
It kind of feels like that this morning. While it is certainly not Hawaii, this place is not without its beauty and charm. Proximity to the mountains helps, as does proximity to the great plains and foothills. The forest lands are beautiful in their colours and the crisp air comes and goes at night, leaving the days to wallow in the warmth of the autumn sun. Up against the soaring peaks there are wild beasts safely tucked away in the woods, all carefully fenced off to keep them in their space and we in ours. It will be warm today but not too warm, sunny and clear skies, light breeze and gentle air.
In all of this, I sit. No plan, no intent, no goal, no action required. I sit, waiting for the next thing to happen, waiting for the next show to start, waiting for the next errand to run. I sit, readying myself for the excursion across the street to get my blood tested yet again. I sit, because I cannot stand. I sit, because there is nothing to move me. I sit, living another shitty day in paradise.
I remember being in Hawaii shortly after I got married. The girl who was my wife was, even then, an enthusiastic shopper. She was not a buyer, just a shopper. She could spend hours in a store and yet come away having spent nothing more than time. We were in Waikiki, standing on a sidewalk, exploring the local shops when a downpour fell, a burst of rain thunderous and biblical, flooding the streets, overwhelming the drains, running up onto the sidewalks pushing the refuse of the gutters along with it. It was a juxtaposition, this clear and warm water from the skies and this dirty dampness at our feet.
By way of escape we dashed into a small souvenir shop, a T-shirt shop, one of the ubiquitous small shops that forever line the streets of that tourist mecca, offering useless trinkets and shirts guaranteed to last no longer than a week past the last day of your vacation. That's when I saw it, the t-shirt with the ultimate reminder of life, whether here or there, and the way we must all face our realities. The slogan on the t-shirt said "Just another shitty day in paradise".
It kind of feels like that this morning. While it is certainly not Hawaii, this place is not without its beauty and charm. Proximity to the mountains helps, as does proximity to the great plains and foothills. The forest lands are beautiful in their colours and the crisp air comes and goes at night, leaving the days to wallow in the warmth of the autumn sun. Up against the soaring peaks there are wild beasts safely tucked away in the woods, all carefully fenced off to keep them in their space and we in ours. It will be warm today but not too warm, sunny and clear skies, light breeze and gentle air.
In all of this, I sit. No plan, no intent, no goal, no action required. I sit, waiting for the next thing to happen, waiting for the next show to start, waiting for the next errand to run. I sit, readying myself for the excursion across the street to get my blood tested yet again. I sit, because I cannot stand. I sit, because there is nothing to move me. I sit, living another shitty day in paradise.
Monday, 14 October 2013
Anthropomorphization
One of the most irritating things about this disease is its contrariness. Whatever I want to do, it seems to want to stop me from doing it. Whenever I seem to be ready to go, it seems to do whatever it can to stop me. I know I am anthropomorphizing my illness; that is not my intent. It's just that it seems there is no other way to effectively express the kinds of things that happen.
Take saliva, for instance; at least, take mine please, I have too much. But not always, and not when I need it. Last night I had one of those night, those nights when lots of things just happen the wrong way; it was a generally wet night, indoors. Saliva was a part of it, with me drooling in the middle of the night, awaking to find myself in a spit swamp on my pillow. My cheek was wet, my pillow was wet, my sheet was wet; it was just plain yucky.
Now, this morning, I awake and it seems this saliva source has decided to completely dry up. I was making coffee and thought I might liberate a nice small piece of turkey breast from the platter in the fridge; I noticed it while retrieving milk for my coffee. So I fisted on to a piece and took a bite. Do you think I could generate even the smallest amount of saliva to moisten this morsel?
My mouth was a veritable Sahara, completely dry, so dry that on taking a small breath between chews a tiny portion of turkey floated upward and inward on the Mistral of my breath and found it's way into my windpipe, something that now happens on a periodic basis and something for which I must take cautions. I used coffee to moisten my mouth and throat, managing to hack up that mote of meat with the liquid lubricant.
There are other things that are perverse. For example, cramps. My ability to generate voluntary and useful movement in my legs and feet is almost completely gone. Yet how is it, with all this muscle atrophy, that I seem to be able to generate tremendous cramps in my legs and feet, especially my left foot? How is it that I cannot tap to a tune or walk a step, yet these muscles have the power to create intense pain by their involuntary movement?
This is the contrariness of which I speak, the ability of this disease to generate symptoms that immerse me in frustration, giving me things I don't want when I don't want them, and taking what I want when I want it most of all. This is the madness that drives me to anthropomorphize.
Take saliva, for instance; at least, take mine please, I have too much. But not always, and not when I need it. Last night I had one of those night, those nights when lots of things just happen the wrong way; it was a generally wet night, indoors. Saliva was a part of it, with me drooling in the middle of the night, awaking to find myself in a spit swamp on my pillow. My cheek was wet, my pillow was wet, my sheet was wet; it was just plain yucky.
Now, this morning, I awake and it seems this saliva source has decided to completely dry up. I was making coffee and thought I might liberate a nice small piece of turkey breast from the platter in the fridge; I noticed it while retrieving milk for my coffee. So I fisted on to a piece and took a bite. Do you think I could generate even the smallest amount of saliva to moisten this morsel?
My mouth was a veritable Sahara, completely dry, so dry that on taking a small breath between chews a tiny portion of turkey floated upward and inward on the Mistral of my breath and found it's way into my windpipe, something that now happens on a periodic basis and something for which I must take cautions. I used coffee to moisten my mouth and throat, managing to hack up that mote of meat with the liquid lubricant.
There are other things that are perverse. For example, cramps. My ability to generate voluntary and useful movement in my legs and feet is almost completely gone. Yet how is it, with all this muscle atrophy, that I seem to be able to generate tremendous cramps in my legs and feet, especially my left foot? How is it that I cannot tap to a tune or walk a step, yet these muscles have the power to create intense pain by their involuntary movement?
This is the contrariness of which I speak, the ability of this disease to generate symptoms that immerse me in frustration, giving me things I don't want when I don't want them, and taking what I want when I want it most of all. This is the madness that drives me to anthropomorphize.
Sunday, 13 October 2013
Living Alone
I am frustrated. My son, Ricky, is living with me and while this may seem like a good thing to those of you focused on fear and inability, for those of us focused on living a full and complete life, this is, at times more often than not, problematic.
Ricky is 23, just. He was unemployed up until the other day when he started working at Toys 'R Us across the street. He spends the majority of his time in his room, online, playing DoTA. For those less literate with respect to online gaming, it is a multi-player online battle arena game where players play in teams, working to destroy the opposing teams "Ancient", a building that must be destroyed to win the game. Each team has multiple members and since this game is played online, it hosts players from all over the world.
Through this game Ricky has built up a substantial online social community. He meets some of them in person periodically; in fact when we were in the US last April, we had to make a stop in Los Angeles so he could spend a day with his friends there, the friends he had met through DoTA. However since the game is global, there is almost always a game going on, one where he can join his online community and escape from his local, temporal interactions.
He gets really involved in these games, spending hours in front of the screen. This has the rather deleterious effect of leading him to "forget" all kinds of responsibilities here at home. He "forgets" to do the dishes, he does half the dishes in a hurry so he can get back to his game, he "forgets" to clean up or tidy, he "forgets" if I have asked him to help with an errand or help with some task beyond my ability. Add this to his well-trained passive aggressive nature, a talent set he has learned from his parents, and you have the perfect base for inaction when inaction means he can escape reality. He gets insulted and angry when I ask him to leave his online fantasy and subject himself to our much more humbling reality.
Now that he is earning money, I am asking him to pay for his share of the living costs. I have asked that he pay $800 a month. This would include rent, internet and utilities, use of my truck periodically, all the food he eats and all the liquor he drinks. He is outraged that I would ask for so much, feeling that since his is making so little he should pay only a little. Somehow the world must still bend to meet his needs, not the other way round. Of course his model for this was our family home; somehow I always managed to bend the world to meet his mother's needs and my family's needs. He has seen nothing else.
His counterpoint to my insistence that he pay to live is to say that he is moving back to BC in December, and that he will need more money on hand if he is going to move. I am encouraging him to take control of his own life. It this is what he wants, then he should do it. However, still childish in his view, he somehow thinks that I should continue to fund his existence and activities. I am sure life will disabuse him of this notion. After all, he has already lived on his one for a short while. I am sure he can make it on is own.
I am equally sure I can make it on my own. Perhaps living alone is the best thing for me these days.
Ricky is 23, just. He was unemployed up until the other day when he started working at Toys 'R Us across the street. He spends the majority of his time in his room, online, playing DoTA. For those less literate with respect to online gaming, it is a multi-player online battle arena game where players play in teams, working to destroy the opposing teams "Ancient", a building that must be destroyed to win the game. Each team has multiple members and since this game is played online, it hosts players from all over the world.
Through this game Ricky has built up a substantial online social community. He meets some of them in person periodically; in fact when we were in the US last April, we had to make a stop in Los Angeles so he could spend a day with his friends there, the friends he had met through DoTA. However since the game is global, there is almost always a game going on, one where he can join his online community and escape from his local, temporal interactions.
He gets really involved in these games, spending hours in front of the screen. This has the rather deleterious effect of leading him to "forget" all kinds of responsibilities here at home. He "forgets" to do the dishes, he does half the dishes in a hurry so he can get back to his game, he "forgets" to clean up or tidy, he "forgets" if I have asked him to help with an errand or help with some task beyond my ability. Add this to his well-trained passive aggressive nature, a talent set he has learned from his parents, and you have the perfect base for inaction when inaction means he can escape reality. He gets insulted and angry when I ask him to leave his online fantasy and subject himself to our much more humbling reality.
Now that he is earning money, I am asking him to pay for his share of the living costs. I have asked that he pay $800 a month. This would include rent, internet and utilities, use of my truck periodically, all the food he eats and all the liquor he drinks. He is outraged that I would ask for so much, feeling that since his is making so little he should pay only a little. Somehow the world must still bend to meet his needs, not the other way round. Of course his model for this was our family home; somehow I always managed to bend the world to meet his mother's needs and my family's needs. He has seen nothing else.
His counterpoint to my insistence that he pay to live is to say that he is moving back to BC in December, and that he will need more money on hand if he is going to move. I am encouraging him to take control of his own life. It this is what he wants, then he should do it. However, still childish in his view, he somehow thinks that I should continue to fund his existence and activities. I am sure life will disabuse him of this notion. After all, he has already lived on his one for a short while. I am sure he can make it on is own.
I am equally sure I can make it on my own. Perhaps living alone is the best thing for me these days.
Saturday, 12 October 2013
Perspective
Katie strikes again. She has asked in one of her notes, "How has your perspective changed?" It's a big question given that I have now had nearly six decades of life in which to contemplate the view from my lowly perch. You see, perspective is all about your mental view or outlook, the way you see life and the world about you. Perspective is that which colours all, that which focuses and filters your vision and view.
My perspective has changed dramatically over the years, perforce on the wings of tide and time, pushed by the natural ebb and flow of life, shaped by the stages through which all, or nearly all men go. My perspective is not fixed; it has been molded and formed, and will continue to be molded and formed, until my last breath. This is simply because one's position changes as one's life changes, one's view changes as time and circumstance demand.
This change has seen me through the foolishness of youth, when I thought I could shape the world to my ends, rough however they might be. This change has seen me through the enforced patience of parenthood and child-rearing. This change has seen me into my mid-life, where whole new vistas open up with the removal of the cloak of caring and protecting. This change continues as illness has forced new ways of living and doing upon me.
How has my perspective changed? It has gotten broader, more forgiving and more accepting. Now, with children behind me and my life in my own hands, I need not fear for my family framework. Yet, even as a parent wanting to create a stable, sheltered homelife, I was broad, forgiving and accepting. That part of me has simply matured to encompass far more than just my narrow family life.
As I have grown, I have come to be more willing to see that I can not only be incorrect, but correct as well. For so many years I worried that I was wrong, that worry used potently by my ex-wife as a tool to manage me. For so many years I was fully willing to accept that I was the least likely to be correct, and in so doing became the most vociferous advocate of my own correctness. My weakness expounded itself in my willingness to trump the possibility that other views might be valid and useful. Where my argument was weak, I shouted.
Now, thanks to the passage of time and ravages of living, I can see that being right or wrong is really not what matters. What matters is what we do. I still shout on occasion yet I am comfortable simply observing the cupidity and foolishness that tumbles about me in daily life. I am still me, still loud, still boisterous. Yet I have learned that sometimes it's not important to be right, especially when your internal strength suffices to uphold. Most importantly, I have learned, in so far as I can, to share both rightness and wrongness.
My perspective has changed. It is no longer about me and the world, me versus the world. It is about me in the world, me as a part of the world. It is about how my part must be played, and how I must play it. Perhaps that is the biggest change; my view starts from outside of myself these days. My inside is still here, still mine, still present; it's the point if view that is different. I am no longer inside looking out; I am outside looking in.
There is no perfection in this, no completeness, no smug complacency. I am still a failing, stumbling, struggling, unsure human, desperately seeking my place in this world. I just see if from a different point of view these days, as through a lens distant from myself, as if it were a picture in a frame. I can observe, both in my rightness and wrongness, both in my perfection and failure, both in my kindness and cruelty. I am not a dispassionate observer but simply one whose point of view has changed over time.
My perspective has changed dramatically over the years, perforce on the wings of tide and time, pushed by the natural ebb and flow of life, shaped by the stages through which all, or nearly all men go. My perspective is not fixed; it has been molded and formed, and will continue to be molded and formed, until my last breath. This is simply because one's position changes as one's life changes, one's view changes as time and circumstance demand.
This change has seen me through the foolishness of youth, when I thought I could shape the world to my ends, rough however they might be. This change has seen me through the enforced patience of parenthood and child-rearing. This change has seen me into my mid-life, where whole new vistas open up with the removal of the cloak of caring and protecting. This change continues as illness has forced new ways of living and doing upon me.
How has my perspective changed? It has gotten broader, more forgiving and more accepting. Now, with children behind me and my life in my own hands, I need not fear for my family framework. Yet, even as a parent wanting to create a stable, sheltered homelife, I was broad, forgiving and accepting. That part of me has simply matured to encompass far more than just my narrow family life.
As I have grown, I have come to be more willing to see that I can not only be incorrect, but correct as well. For so many years I worried that I was wrong, that worry used potently by my ex-wife as a tool to manage me. For so many years I was fully willing to accept that I was the least likely to be correct, and in so doing became the most vociferous advocate of my own correctness. My weakness expounded itself in my willingness to trump the possibility that other views might be valid and useful. Where my argument was weak, I shouted.
Now, thanks to the passage of time and ravages of living, I can see that being right or wrong is really not what matters. What matters is what we do. I still shout on occasion yet I am comfortable simply observing the cupidity and foolishness that tumbles about me in daily life. I am still me, still loud, still boisterous. Yet I have learned that sometimes it's not important to be right, especially when your internal strength suffices to uphold. Most importantly, I have learned, in so far as I can, to share both rightness and wrongness.
My perspective has changed. It is no longer about me and the world, me versus the world. It is about me in the world, me as a part of the world. It is about how my part must be played, and how I must play it. Perhaps that is the biggest change; my view starts from outside of myself these days. My inside is still here, still mine, still present; it's the point if view that is different. I am no longer inside looking out; I am outside looking in.
There is no perfection in this, no completeness, no smug complacency. I am still a failing, stumbling, struggling, unsure human, desperately seeking my place in this world. I just see if from a different point of view these days, as through a lens distant from myself, as if it were a picture in a frame. I can observe, both in my rightness and wrongness, both in my perfection and failure, both in my kindness and cruelty. I am not a dispassionate observer but simply one whose point of view has changed over time.
Friday, 11 October 2013
This Is A Day
I'm up fairly early this morning, at least, before 9:00 AM. Rosa will be here to do the Friday cleaning very shortly. Ricky is headed off to his first full day on the job today, across the street at Toys 'R Us. The sun is creeping up, having glared through the cloud gap running parallel along the horizon, making its way to the shelter of the grey skies above.
It's a good morning, a steady morning, a morning with small plans and regular routine. I have no blood tests today, no meetings nor medical appointments. I have no urgencies in my life, nothing that must be done. All I have is my day, my plan to go grocery shopping, and a hope for something interesting this evening.
That's not a bad thing; in fact I think it is a good thing. Days like these, days of gentle weather and warm air, days with an easy start and a long, placid pace; these are the days that are soft and kind. These are the days where you get to catch your breath, take a break, and consider all that there is in life made possible by the mere act of living it and letting it happen.
My life is a good life. It is filled with beauty and kindness, friends and family, adventure and fun. It is filled with mornings both good and bad, days where the rain falls and days where the sun shines. Into all of those days, I get to live and go forward, to find love and joy, to be with others and have them be with me. Onward ever I go, into days where I feel the strength and joy of living, even living alone, days where fear cannot find me.
Surely there are moments of sadness, moments when my future seems frustrated, moments when the things that I want seem tantalizingly just out of reach. Surely there are days where my spirit has been pummeled and my body feels beaten. Yes, surely there are those days. This is not one of them. This is a day where my spirit is compassionate and caring, where my morale is steady and my mood is at ease. This is a day where all that I have is mine to possess and all of my future is mine to make. This is a day, and I shall live it.
It's a good morning, a steady morning, a morning with small plans and regular routine. I have no blood tests today, no meetings nor medical appointments. I have no urgencies in my life, nothing that must be done. All I have is my day, my plan to go grocery shopping, and a hope for something interesting this evening.
That's not a bad thing; in fact I think it is a good thing. Days like these, days of gentle weather and warm air, days with an easy start and a long, placid pace; these are the days that are soft and kind. These are the days where you get to catch your breath, take a break, and consider all that there is in life made possible by the mere act of living it and letting it happen.
My life is a good life. It is filled with beauty and kindness, friends and family, adventure and fun. It is filled with mornings both good and bad, days where the rain falls and days where the sun shines. Into all of those days, I get to live and go forward, to find love and joy, to be with others and have them be with me. Onward ever I go, into days where I feel the strength and joy of living, even living alone, days where fear cannot find me.
Surely there are moments of sadness, moments when my future seems frustrated, moments when the things that I want seem tantalizingly just out of reach. Surely there are days where my spirit has been pummeled and my body feels beaten. Yes, surely there are those days. This is not one of them. This is a day where my spirit is compassionate and caring, where my morale is steady and my mood is at ease. This is a day where all that I have is mine to possess and all of my future is mine to make. This is a day, and I shall live it.
Thursday, 10 October 2013
Get Tested, Get Home
It's a dull, dreary morning here in Calgary, the sky an ashen grey outside my window, the streets dry but appearing damp, the sounds of the cars softened by the heavy air. Even the birds have abandoned my tree this morning, leaving only the rhythmic noise of traffic rolling by to provide a break for the solidness of silence. These are the sights and sounds of a quiet Thursday morning as I gaze upon another day.
It's a blood test day today. I need to be across the street at the blood lab where where once again I will play pincushion to the talented vampires that make their irregular extractions from my now well tracked arm. Yet there is a challenge today, an impediment to my usual ease of progress into my personal torture. My power wheelchair is broken and has been taken in for repairs.
Up until today, going across the street for blood work had actually consisted of two or three separate things. First there would be that which I must do, my required donation for scientific study and testing. That, having taken far too long and yet happening in such quick dispatch, would leave me free with my power wheelchair to head over to the Mall, where the delights of Starbucks and Cinnzeo await. There, with my pinhole poke duly bandaged, I would reward my efforts with something tasty and completely dietarily inappropriate.
Having consumed my coffee and cinnamon bun, in the case of Cinnzeo, or simply a Hazelnut Latte if Starbucks, I would turn my attention to the attractions of Market Mall, making my way through the wandering interior pathways to be inside entrance of Safeway, whereupon I would shop. Mostly I would get the small day-to-day things, a few fresh vegetables, some milk, perhaps a few staples if needed, and then roll over to pay and leave. On some occasions I might find myself at the flower counter, selecting a rose or carnation.
Today this ritual, this series of rewards for the infliction on my person, is at risk. Without my power chair the ramble across the street, through traffic, up and down sidewalk ramps, into and out of doors, becomes not just risky but tiring. While I can certainly do it, the pleasure becomes work and the sensory delight diminishes with the onslaught. Today, it is a task, not a treasure.
In fact today I will most likely use my truck and simply drive across the street. I know this seems wasteful, but I am the one pushing the wheelchair. The slope out of my garage is daunting enough. The risk of crossing the street with wanton drivers paying more attention to cell phones than pedestrians or wheelchairs, the potential for damage; it's a bit much. Yet having the truck will likely preclude the other activities. It's just a hassle. So today it will be simple. Get tested, get home; that's enough for now.
It's a blood test day today. I need to be across the street at the blood lab where where once again I will play pincushion to the talented vampires that make their irregular extractions from my now well tracked arm. Yet there is a challenge today, an impediment to my usual ease of progress into my personal torture. My power wheelchair is broken and has been taken in for repairs.
Up until today, going across the street for blood work had actually consisted of two or three separate things. First there would be that which I must do, my required donation for scientific study and testing. That, having taken far too long and yet happening in such quick dispatch, would leave me free with my power wheelchair to head over to the Mall, where the delights of Starbucks and Cinnzeo await. There, with my pinhole poke duly bandaged, I would reward my efforts with something tasty and completely dietarily inappropriate.
Having consumed my coffee and cinnamon bun, in the case of Cinnzeo, or simply a Hazelnut Latte if Starbucks, I would turn my attention to the attractions of Market Mall, making my way through the wandering interior pathways to be inside entrance of Safeway, whereupon I would shop. Mostly I would get the small day-to-day things, a few fresh vegetables, some milk, perhaps a few staples if needed, and then roll over to pay and leave. On some occasions I might find myself at the flower counter, selecting a rose or carnation.
Today this ritual, this series of rewards for the infliction on my person, is at risk. Without my power chair the ramble across the street, through traffic, up and down sidewalk ramps, into and out of doors, becomes not just risky but tiring. While I can certainly do it, the pleasure becomes work and the sensory delight diminishes with the onslaught. Today, it is a task, not a treasure.
In fact today I will most likely use my truck and simply drive across the street. I know this seems wasteful, but I am the one pushing the wheelchair. The slope out of my garage is daunting enough. The risk of crossing the street with wanton drivers paying more attention to cell phones than pedestrians or wheelchairs, the potential for damage; it's a bit much. Yet having the truck will likely preclude the other activities. It's just a hassle. So today it will be simple. Get tested, get home; that's enough for now.
Wednesday, 9 October 2013
Don't Give Up On My Behalf
I am sick and tired of the negative people, the ones who talk about what I cannot do today, or what I will not be able to do tomorrow. I'm sick and tired of those people who see my life through the lens of disability, future losses and death. I'm sick and tired of those people who would limit what I can do simply because they would not be able to do it in my place.
I am a fully capable, free and strong man with a future. That future is as long as it will be, and will be as full as I can make it. That future will have personal success, financial success, and, with any luck, relationship success. That future will be whatever time my life gives to me, be it long or short. In other words I am a living, breathing, functioning man with a future.
But you have ALS, you say! You're right; I have a diagnosis that clouds and potentially shortens my life. Now look next to you, on either side, as you sit for your coffee. At least one of those people will get diagnosed with cancer in their life, sooner or later. Now look at the other person, the one who won't get cancer. Ask yourself how he or she will die. We talk about living long lives but a friend of mine recently had a relative who died from cancer at age 71. That's not old in modern metrics, but it's only a decade short of the average life span.
What about my friend Juanita who died in February 2011 from pancreatic cancer? What predictor would you have for her death at 56? Yet who would have limited her life? Up until diagnosis, one would never of thought of her as sick or living with a threat over her life. Like her, I have a diagnosis. Like her, I will die. Unlike her I have the pleasure and pain of knowing for many years what my diagnosis is. Like her, I have no idea of what will ultimately end my life.
Don't limit my life simply because you are afraid for your own. Right now I will give you your diagnosis. You are most likely to die from either cancer or heart disease, but in the end something will get you, sooner than you want to go. If you are young, it may happen in the near term or long term. But with each passing day, illness and infirmity move from probable to likely.
Don't give up on my behalf. Just because you don't think you can handle what I can handle, just because you don't want to face what I face daily, just because you don't want to admit to your own infirmity or finality, that does not give you the right or freedom to say what my future looks like. My future is mine; bright, clear, and filled with possibility. Can you say the same? Can you say it with a diagnosis?
Tuesday, 8 October 2013
Kitchen Dirt
I don't understand my own mind some days. Sometimes I can think of nothing interesting to say or write; other days my mind is a whirl and swirl with thoughts and emotions and ideas. Some days the only thing I can do is stare out my window and hope for inspiration; other days it is all I can do to stop myself from going on endlessly.
Today, of all things, I find myself half way in the middle. There are a bunch of things about which I would love to write, angers to chew on and injustices to revolt against. Yet I feel no passion for this. Here I am with ideas and no focal point from which to launch them. Here I am with feelings and emotions yet with no urgency or desire to share them.
Perhaps I should just talk about cleaning the kitchen. This is one of the more challenging tasks in my life, one of the things that seems to find a way to forever elude me. It seems my kitchen is only truly clean when Rosa comes on Friday to do her best. Unfortunately often that is not enough. There are things she misses, things only I can see thanks to my advantaged viewpoint. There are spots on the floor under the cupboard overhang, little clumps of dust neath the edge of the fridge, stains on the lower cupboard doors at foot level, all only visible, it seems, to me at my lowered eye level.
The challenge for me in this arena is my inability. You might think that being down low here, seated in my rolling inspection station, it would be easy for me to reach down and wipe up the spots and stains that assault my marginally fastidious nature. Well, it's not. That's the challenge of having failed legs; not only can I not stand up, I also cannot bend down. To reach these low hanging smudges, I must somehow get down there. Yet in the act of getting low I may be brought low, falling out of my wheelchair.
What I need is someone to get down there and wipe where I show the way. I know, it's a lot to ask. I've tried asking Ricky only to suffer his rejection that the smudges even exist. Yet I see them; they are not a fantasy or creation of my need. They are there, leering at me, just out of my ability. I've asked Rosa yet she seems unable to see them either, or perhaps she is unable to reach them just as I am, only for different reasons that seem mysterious to me.
So dirty spots in my kitchen is what I must write about today. Of all the mundane things in life, this is the most mundane. Of all of the importances we face, this is the least. Yet here I am, helpless in their affront; here I am with a challenge that is just out of my reach, compelled once again to accept my inabilities and limitations. Humph.
Today, of all things, I find myself half way in the middle. There are a bunch of things about which I would love to write, angers to chew on and injustices to revolt against. Yet I feel no passion for this. Here I am with ideas and no focal point from which to launch them. Here I am with feelings and emotions yet with no urgency or desire to share them.
Perhaps I should just talk about cleaning the kitchen. This is one of the more challenging tasks in my life, one of the things that seems to find a way to forever elude me. It seems my kitchen is only truly clean when Rosa comes on Friday to do her best. Unfortunately often that is not enough. There are things she misses, things only I can see thanks to my advantaged viewpoint. There are spots on the floor under the cupboard overhang, little clumps of dust neath the edge of the fridge, stains on the lower cupboard doors at foot level, all only visible, it seems, to me at my lowered eye level.
The challenge for me in this arena is my inability. You might think that being down low here, seated in my rolling inspection station, it would be easy for me to reach down and wipe up the spots and stains that assault my marginally fastidious nature. Well, it's not. That's the challenge of having failed legs; not only can I not stand up, I also cannot bend down. To reach these low hanging smudges, I must somehow get down there. Yet in the act of getting low I may be brought low, falling out of my wheelchair.
What I need is someone to get down there and wipe where I show the way. I know, it's a lot to ask. I've tried asking Ricky only to suffer his rejection that the smudges even exist. Yet I see them; they are not a fantasy or creation of my need. They are there, leering at me, just out of my ability. I've asked Rosa yet she seems unable to see them either, or perhaps she is unable to reach them just as I am, only for different reasons that seem mysterious to me.
So dirty spots in my kitchen is what I must write about today. Of all the mundane things in life, this is the most mundane. Of all of the importances we face, this is the least. Yet here I am, helpless in their affront; here I am with a challenge that is just out of my reach, compelled once again to accept my inabilities and limitations. Humph.
Monday, 7 October 2013
Glasses
Yesterday I wrote about how we, as human beings, like panes of glass. Today I am writing about something far more pragmatic and far more prosaic; eyeglasses, another pain of glass.
This morning I went to get my blood drawn, once again, for what is now my thrice weekly PT/INR test. I was slow in getting up so I delayed blogging for the morning with a plan to write post facto. After the vampirical moment I headed downstairs, or rather down elevator, from the blood lab where I happened upon the local Optometrist's shop. There was a sign in the window declaring for all and sundry to see that they had "NEW LOWER PRICES" and further declaring that their prices were lower than Walmart! Such a deal, thought I.
So in I went, with my first goal in mind to get myself a new prescription. I entered into the testing room where a charming young lady put me through a bunch of tests ranging to from looking at a fuzzy cartoon to getting puffs of air blown onto my eyeball. I even got to play some sort of video game where vertical bars were randomly flashed in varying parts of my field of vision, and I was to click the clicker when I saw the bars. Bars appeared, I clicked, and all was well.
Having tested the mechanics of my eyes, the nurse shepherded me into the Optometrist's office. There, after some wiggling and weaving of my power wheelchair concluded by a successful transfer into "the chair", he went through the whole confirmation and testing process. You know the one... "which is better, 1 or 2.. 1 or 3... 1 of 4?"
Having concluded the whole process he declared that my eyes were in almost the same state as they were when I last had them tested more than three years ago, an event that took place through pure happenstance in Seoul, Korea, but that is another story. So, it would appear that while ALS is claiming my muscles, my vision is unimpaired. Actually he was surprised; he had expected a much higher level of deterioration over these years. Yet here I was, visually stable, so to speak. I paid the $120 examination fee.
Then he took me out to look at eyeglass frames. This is the point at which all pretense of stability failed me. I saw the price tags on these bits of plastic with their flimsy base metal hinges. You would think they were made of gold, and perhaps some of them were. I simply do not understand how a plastic frame with a small set of hinges can be priced at $400! The salesperson said that it was the designers and manufacturers that set the prices. I said "I'm in the wrong business."
So I left and went to look at other shops. Still the same issue; ridiculous prices for the most basic of frames. Sure, the prices included lenses. So what? The lenses cost all of $50 to produce; I know this from having purchased lenses only a few years back. So I am now on a mission to find reasonably priced eyeglass frames; it's another pain of glass.
This morning I went to get my blood drawn, once again, for what is now my thrice weekly PT/INR test. I was slow in getting up so I delayed blogging for the morning with a plan to write post facto. After the vampirical moment I headed downstairs, or rather down elevator, from the blood lab where I happened upon the local Optometrist's shop. There was a sign in the window declaring for all and sundry to see that they had "NEW LOWER PRICES" and further declaring that their prices were lower than Walmart! Such a deal, thought I.
So in I went, with my first goal in mind to get myself a new prescription. I entered into the testing room where a charming young lady put me through a bunch of tests ranging to from looking at a fuzzy cartoon to getting puffs of air blown onto my eyeball. I even got to play some sort of video game where vertical bars were randomly flashed in varying parts of my field of vision, and I was to click the clicker when I saw the bars. Bars appeared, I clicked, and all was well.
Having tested the mechanics of my eyes, the nurse shepherded me into the Optometrist's office. There, after some wiggling and weaving of my power wheelchair concluded by a successful transfer into "the chair", he went through the whole confirmation and testing process. You know the one... "which is better, 1 or 2.. 1 or 3... 1 of 4?"
Having concluded the whole process he declared that my eyes were in almost the same state as they were when I last had them tested more than three years ago, an event that took place through pure happenstance in Seoul, Korea, but that is another story. So, it would appear that while ALS is claiming my muscles, my vision is unimpaired. Actually he was surprised; he had expected a much higher level of deterioration over these years. Yet here I was, visually stable, so to speak. I paid the $120 examination fee.
Then he took me out to look at eyeglass frames. This is the point at which all pretense of stability failed me. I saw the price tags on these bits of plastic with their flimsy base metal hinges. You would think they were made of gold, and perhaps some of them were. I simply do not understand how a plastic frame with a small set of hinges can be priced at $400! The salesperson said that it was the designers and manufacturers that set the prices. I said "I'm in the wrong business."
So I left and went to look at other shops. Still the same issue; ridiculous prices for the most basic of frames. Sure, the prices included lenses. So what? The lenses cost all of $50 to produce; I know this from having purchased lenses only a few years back. So I am now on a mission to find reasonably priced eyeglass frames; it's another pain of glass.
Sunday, 6 October 2013
Panes Of Glass
The walking wounded; someone with me last night used that phrase to describe the mass of humanity, all of us damaged by the vicissitudes of life, damaged by the daily insults and slurs of merely living. We all feel the arrows and cuts of this battle of life, the beating that our own emotions hand to us. We do this to ourselves, mostly, through our own self-judgement and self-condemnation. We hold the knife and willfully push it inwards, seeing ourselves as not worthy of all the good things that life hands to us. We see ourselves darkly.
It starts early, very early in our life. As children, born into life, we arrive a clear pane of glass, unblemished, without marks. Then, as we move onward, life puts its fingers on us, smudging our clear pane, fuzzing up the picture, making life unclear. Life works on us, scratching our surface, sometimes digging deep and leaving scars on the glass. For most of us, we see through the glass dim, living in uncertainty. For some of us, the damage it too great; we break and remain broken.
As a parent, my goal has always been to scratch that glass as little as possible, to leave the least smudge, to give my children the best chance at clarity in their lives. I have always believed that the less we handle our children's lives, the more they learn to handle them on their own; the less we touch the glass, the more they can see through it. Even as an adult parent of adult children, I have tried, often unsuccessfully, to keep my smudging minimal.
Yet it is not only our children that we scratch as we move through life. We mar the surface of all we love, leaving our indelible prints on those who we contact lightly or strongly, the more intimate and personal the touch, the greater the impact on the glass surface of their lives. With our families we leave the greatest mark, yet we leave a film on the glass of all we touch, often without even knowing we have done so. Our very contact with friends and lovers means we colour and cloud their view, and they ours.
Life is complicated, messy, uncertain. We awaken each day unknowing of its end, uncertain of its path, and unwilling to let it go. We move through these panes of glass, touching them, smudging them, and at times leaving them shattered by our passing. This is our destiny, the path of our life; to do this is to be human, to exist. It's just the way it is.
It starts early, very early in our life. As children, born into life, we arrive a clear pane of glass, unblemished, without marks. Then, as we move onward, life puts its fingers on us, smudging our clear pane, fuzzing up the picture, making life unclear. Life works on us, scratching our surface, sometimes digging deep and leaving scars on the glass. For most of us, we see through the glass dim, living in uncertainty. For some of us, the damage it too great; we break and remain broken.
As a parent, my goal has always been to scratch that glass as little as possible, to leave the least smudge, to give my children the best chance at clarity in their lives. I have always believed that the less we handle our children's lives, the more they learn to handle them on their own; the less we touch the glass, the more they can see through it. Even as an adult parent of adult children, I have tried, often unsuccessfully, to keep my smudging minimal.
Yet it is not only our children that we scratch as we move through life. We mar the surface of all we love, leaving our indelible prints on those who we contact lightly or strongly, the more intimate and personal the touch, the greater the impact on the glass surface of their lives. With our families we leave the greatest mark, yet we leave a film on the glass of all we touch, often without even knowing we have done so. Our very contact with friends and lovers means we colour and cloud their view, and they ours.
Life is complicated, messy, uncertain. We awaken each day unknowing of its end, uncertain of its path, and unwilling to let it go. We move through these panes of glass, touching them, smudging them, and at times leaving them shattered by our passing. This is our destiny, the path of our life; to do this is to be human, to exist. It's just the way it is.
Saturday, 5 October 2013
Feel Your Feelings And Let Them Go
This is one of those "random thoughts" kinds of post, the kind where I ramble about the things in life that I have learned, the thin little lessons that have become part of my view. It is also a reminder to myself, so here goes the ramble.
Be careful what you wish for; you might just get it. It is often the things we most long for which become our undoing. I think of these things, things I wanted badly, things I would give almost anything to have. Therein lies the undoing. Everything has a price. Sometimes the price of those things you most covet is far too high yet you are blinded by your own desire, so much that you cannot see the true cost. So be careful; know the true cost.
Be grateful for that which comes to you. Never assume that you deserve what you win nor give yourself credit for the outcome of things. There are so many variables involved; you simply cannot control them all and any one of them could have changed things completely. So much of the time it is those small outside influences that drive the outcome. You may think you did something right, or wrong, and sometimes you will be right. But mostly things just come to you, and when they do, be grateful. And when they don't, be grateful for that too.
Mourn that which you lose. Each loss means something. I know people who say "Focus on what you have, not on what you have lost". I don't agree. If you don't mourn that which you have lost, it shows how little it meant to you when you had it. Mourning is important, as is mourning in proportion. Mourn greatly the losses that mean the most; mourn lightly the losses that mean the least. Trust yourself in this. Mourn well, and when the mourning is done, move on.
Feel your feelings and let them go. Let the gratitude and mourning be proportionate to the gain or loss. You deserve to have your feelings; they count. Feeling is as important as breathing. Feelings are real. Don't deny them. Once you have felt them in a manner proportionate to their source, release those feelings and move forward. It's all right to fall into an emotional hole; it's not all right to stay there.
I think about a lot of things. For now, I think this is good enough.
Be careful what you wish for; you might just get it. It is often the things we most long for which become our undoing. I think of these things, things I wanted badly, things I would give almost anything to have. Therein lies the undoing. Everything has a price. Sometimes the price of those things you most covet is far too high yet you are blinded by your own desire, so much that you cannot see the true cost. So be careful; know the true cost.
Be grateful for that which comes to you. Never assume that you deserve what you win nor give yourself credit for the outcome of things. There are so many variables involved; you simply cannot control them all and any one of them could have changed things completely. So much of the time it is those small outside influences that drive the outcome. You may think you did something right, or wrong, and sometimes you will be right. But mostly things just come to you, and when they do, be grateful. And when they don't, be grateful for that too.
Mourn that which you lose. Each loss means something. I know people who say "Focus on what you have, not on what you have lost". I don't agree. If you don't mourn that which you have lost, it shows how little it meant to you when you had it. Mourning is important, as is mourning in proportion. Mourn greatly the losses that mean the most; mourn lightly the losses that mean the least. Trust yourself in this. Mourn well, and when the mourning is done, move on.
Feel your feelings and let them go. Let the gratitude and mourning be proportionate to the gain or loss. You deserve to have your feelings; they count. Feeling is as important as breathing. Feelings are real. Don't deny them. Once you have felt them in a manner proportionate to their source, release those feelings and move forward. It's all right to fall into an emotional hole; it's not all right to stay there.
I think about a lot of things. For now, I think this is good enough.
Friday, 4 October 2013
Sore and Tired
I hurt this morning. My arms are stiff and my legs are stiff, my muscles are responding slowly. I am tired. I stayed up past midnight last night and this morning I am paying the price for this exuberance. On Thursday evenings I like to go to "Name That Tune" and it usually goes until almost 11:00 PM. It may be getting to be too much for me. We'll have to wait and see.
It is a reality of having ALS that my world gets smaller on a persistent basis. Each and every day something goes, something happens, something changes. It may not seem like much, and certainly doesn't appear to be an issue if you look at it from a healthy point of view, but my point of view is somewhat different. When I notice that extra bit of difficulty in putting on a sock or pulling up my pants, it's not like that difficulty is passing. While it varies, once I see something I know it will be back soon, and when it comes back, it will be here to stay.
Mornings are always tough for me, so maybe this is just another morning. The soreness in my muscles might mean I am coming down with something. Perhaps I worked them too hard yesterday and staying up late only made things worse. All of these things seem plausible and reasonable, except that with me, once I get tired I stay tired. I don't recover all that quickly.
There are some things that help me, some things that make recovery easier. Nothing beats a good night's rest. Nothing is better than to get enough sleep so I can face the day. So this morning I still got up at 9:00 AM, even though I was still very tired.
Why? Because Rosa, my housekeeper, was coming in at 9:00 AM and I wanted to be up before she got here. Unlike Ricky, I cannot sleep through her visit. He seems to be able to sleep through anything, but then again Rosa makes my bed for me on Fridays and that is a real treat to me, something I don't have to do.
So as with all things, this part of my life is a trade off. It looks like I might have to take a nap this afternoon.
It is a reality of having ALS that my world gets smaller on a persistent basis. Each and every day something goes, something happens, something changes. It may not seem like much, and certainly doesn't appear to be an issue if you look at it from a healthy point of view, but my point of view is somewhat different. When I notice that extra bit of difficulty in putting on a sock or pulling up my pants, it's not like that difficulty is passing. While it varies, once I see something I know it will be back soon, and when it comes back, it will be here to stay.
Mornings are always tough for me, so maybe this is just another morning. The soreness in my muscles might mean I am coming down with something. Perhaps I worked them too hard yesterday and staying up late only made things worse. All of these things seem plausible and reasonable, except that with me, once I get tired I stay tired. I don't recover all that quickly.
There are some things that help me, some things that make recovery easier. Nothing beats a good night's rest. Nothing is better than to get enough sleep so I can face the day. So this morning I still got up at 9:00 AM, even though I was still very tired.
Why? Because Rosa, my housekeeper, was coming in at 9:00 AM and I wanted to be up before she got here. Unlike Ricky, I cannot sleep through her visit. He seems to be able to sleep through anything, but then again Rosa makes my bed for me on Fridays and that is a real treat to me, something I don't have to do.
So as with all things, this part of my life is a trade off. It looks like I might have to take a nap this afternoon.
Thursday, 3 October 2013
Sugar And Salt
Yesterday, when arriving at the blood clinic for my regular extraction, I saw one of them, one of those people, the "human food planets" as my son Ricky is wont to call them. There was a woman, all of 400 pounds or more, or 175 kg for those of us who are not multilingual. She was massive, humongous, immense, colossal, and just plain morbidly obese. I'm not talking about your regular, run-of-the-mill hefty; your ordinary, everyday human fat plant. This woman was outstanding in her size.
As she moved, you could see her wheeze and grunt with the massive effort required to shuffle her way along. As she moved, you could see the effort it took her to maintain her balance, as her voluminous top end fought with her equally massive bottom end for control over her centre of gravity. It was a moving tragedy in action; I felt sorry for her, sad that she had ended up this way.
It may have been a self-inflicted wound. There may be some medical condition. Who knows? What I do know, from going into the medical system on a regular basis, is that self-inflicted illness through obesity is clogging the arteries of our health care system. Every time someone stuffs that extra french fry into their maw, every time someone takes that extra sip from their HFCS drenched Slushie, every time someone gnaws away at that extra bit of cupcake, we all pay the price.
Our obesity epidemic is borne of wealth and the industrialization of food. Those who manufacture that which we consume orally have long learned that extra sweet and extra salt mean extra sales. They are not concerned for the well-being of any individual consumer; they know there will always be more. People reproduce, these days at an alarming rate. There will not be a shortage of markets for manufactured foods delivering manufactured illness.
As I watched her waddle and wheeze, I wondered what it was, how it happened. Then I caught a glance at myself in the mirrored window of the storefront and realized I wasn't exactly tiny myself. Yet I know from experience that if I stop eating, I lose weight. It's that simple. I can even refine it more than that. Now that I am immobilized, in a wheelchair, I don't get much exercise. So even with ALS, I can gain weight by eating manufactured, indigestible, sugar and salt laden foods.
For some time the ALS clinic has encouraged me to eat, to gain weight. There is a strong, very strong, correlation between being slightly or moderately, but not morbidly, obese and living longer with ALS. Nobody knows what it is; it just is one of the things they know. Nonetheless, would that I could walk once again, to be free and fit, to be strong and virile. I know this for sure. Even at her massive size and with all its attendant illness, I would trade her places. She, at least from the outside, has a problem that can be solved simply by a change in habits. Alas, mine cannot.
As she moved, you could see her wheeze and grunt with the massive effort required to shuffle her way along. As she moved, you could see the effort it took her to maintain her balance, as her voluminous top end fought with her equally massive bottom end for control over her centre of gravity. It was a moving tragedy in action; I felt sorry for her, sad that she had ended up this way.
It may have been a self-inflicted wound. There may be some medical condition. Who knows? What I do know, from going into the medical system on a regular basis, is that self-inflicted illness through obesity is clogging the arteries of our health care system. Every time someone stuffs that extra french fry into their maw, every time someone takes that extra sip from their HFCS drenched Slushie, every time someone gnaws away at that extra bit of cupcake, we all pay the price.
Our obesity epidemic is borne of wealth and the industrialization of food. Those who manufacture that which we consume orally have long learned that extra sweet and extra salt mean extra sales. They are not concerned for the well-being of any individual consumer; they know there will always be more. People reproduce, these days at an alarming rate. There will not be a shortage of markets for manufactured foods delivering manufactured illness.
As I watched her waddle and wheeze, I wondered what it was, how it happened. Then I caught a glance at myself in the mirrored window of the storefront and realized I wasn't exactly tiny myself. Yet I know from experience that if I stop eating, I lose weight. It's that simple. I can even refine it more than that. Now that I am immobilized, in a wheelchair, I don't get much exercise. So even with ALS, I can gain weight by eating manufactured, indigestible, sugar and salt laden foods.
For some time the ALS clinic has encouraged me to eat, to gain weight. There is a strong, very strong, correlation between being slightly or moderately, but not morbidly, obese and living longer with ALS. Nobody knows what it is; it just is one of the things they know. Nonetheless, would that I could walk once again, to be free and fit, to be strong and virile. I know this for sure. Even at her massive size and with all its attendant illness, I would trade her places. She, at least from the outside, has a problem that can be solved simply by a change in habits. Alas, mine cannot.
Wednesday, 2 October 2013
Making It Work
I have been spiraling downward for the last week, steadily slumping into a depressive state. It's this damn disease. Just when you think it's going to leave you alone for a while, just when you think it's done taking and destroying, at least for the moment, it comes along and takes some more, destroys some more, leaves more damage and human debris in its wake.
The blood clot thing threw me for a loop; it took me by surprise. I know that you can get blood clots even without ALS. My son-in-law, Lewis, has had his life threatened by the very same thing. This health challenge has affected his life and emotions in much the same way it is affecting mine. The drug protocol, the needles, the limitations to travel, the loss of freedom, all of this has thundered into me and fractured my now very weakened spirit. The damage to relationships and challenge to activity is daunting.
Yet even this shall pass away. That's what the poet says. It was a poem my Dad loved, one that we read at his funeral. All things must pass, not just my life but this moment of depression too. It is not in my nature to sit and wallow, at least not for more than a few days. I love self-pity as a treat but not as a steady diet. After a while the mud pit of misery is just too much; this emotional slop ad nauseum becomes simply a dark, unremitting hole out of which I must climb. So climb I do; climb I must.
Ultimately I am a man of action, the guy who makes stuff work. Ultimately I am not a depressed person, it is not in my nature; it is not who I am. What to do is more the question. In a great many cases the best thing to do is watch and wait; it's often not the easiest thing to do, but I can do it. To steal a quote from Desiderata and Pierre Trudeau, "to everything there is a season". These last few days have simply been my season of self-pity. Now I will see how things go and take it from there.
I can take it from here. I can handle this. If you don't believe then I will steal another quote from Pierre; "just watch me". I will figure this out too. I will come up with a solution. I will make this work. After all, that is really who I am.
The blood clot thing threw me for a loop; it took me by surprise. I know that you can get blood clots even without ALS. My son-in-law, Lewis, has had his life threatened by the very same thing. This health challenge has affected his life and emotions in much the same way it is affecting mine. The drug protocol, the needles, the limitations to travel, the loss of freedom, all of this has thundered into me and fractured my now very weakened spirit. The damage to relationships and challenge to activity is daunting.
Yet even this shall pass away. That's what the poet says. It was a poem my Dad loved, one that we read at his funeral. All things must pass, not just my life but this moment of depression too. It is not in my nature to sit and wallow, at least not for more than a few days. I love self-pity as a treat but not as a steady diet. After a while the mud pit of misery is just too much; this emotional slop ad nauseum becomes simply a dark, unremitting hole out of which I must climb. So climb I do; climb I must.
Ultimately I am a man of action, the guy who makes stuff work. Ultimately I am not a depressed person, it is not in my nature; it is not who I am. What to do is more the question. In a great many cases the best thing to do is watch and wait; it's often not the easiest thing to do, but I can do it. To steal a quote from Desiderata and Pierre Trudeau, "to everything there is a season". These last few days have simply been my season of self-pity. Now I will see how things go and take it from there.
I can take it from here. I can handle this. If you don't believe then I will steal another quote from Pierre; "just watch me". I will figure this out too. I will come up with a solution. I will make this work. After all, that is really who I am.
Tuesday, 1 October 2013
I Worry; It's What I Do
It all wears you out, dealing with the day to day stuff of life then dealing with the medical issues. It makes me tired, even at the start of my day. Now, mornings are never good for me; I am an afternoon kind of guy. But sleeping all day doesn't do it either. I take a while to wake up. So typically I am at my lowest point when I get out of bed.
This morning I lay in bed worrying. There is a lot to worry about in my days. I worry about my health. I worry about the blood tests and my PT/INR levels. I worry about my shoulder, the pain and the slow recovery. I worry about money, paying the rent and making ends meet. I am worried today because I am meeting the Realtor, or rather he is meeting me, here in my apartment. Shopping for a new home is not too much to worry about; I am more concerned about getting a mortgage. My brothers tell me that based on my historical income and down-payment I should be all right, but I worry that they might be incorrect in their assertions.
All of this worry, for no good reason, is foolish. I know this yet I cannot stop it. Like a dog with a bone, I must chew on it relentlessly. Then, just when I think I am done, I bury one bone and dig up another, so I can chew all over again. This worry is really a result of having too much time on my hands, having no real reason to get up in the mornings and no real focus for the clock cycles in my brain.
I had planned on going back to work this fall, part time, just enough to give me some sort of focus. I haven't gotten there yet, haven't made the effort to get some work. Part of me says no, part of me says yes. I worry about whether or not I can do anything, given the way my energy levels fluctuate. I worry that people won't want me, won't want my skills and abilities, won't want my knowledge and experience, all because of the limitations of ALS.
I suppose the bottom line is this; I am a worrier. It is what I am good at. I used to get paid for it; I used to be the designated worrier on the projects I managed. Now all that talent is going to waste. I worry about that too.
This morning I lay in bed worrying. There is a lot to worry about in my days. I worry about my health. I worry about the blood tests and my PT/INR levels. I worry about my shoulder, the pain and the slow recovery. I worry about money, paying the rent and making ends meet. I am worried today because I am meeting the Realtor, or rather he is meeting me, here in my apartment. Shopping for a new home is not too much to worry about; I am more concerned about getting a mortgage. My brothers tell me that based on my historical income and down-payment I should be all right, but I worry that they might be incorrect in their assertions.
All of this worry, for no good reason, is foolish. I know this yet I cannot stop it. Like a dog with a bone, I must chew on it relentlessly. Then, just when I think I am done, I bury one bone and dig up another, so I can chew all over again. This worry is really a result of having too much time on my hands, having no real reason to get up in the mornings and no real focus for the clock cycles in my brain.
I had planned on going back to work this fall, part time, just enough to give me some sort of focus. I haven't gotten there yet, haven't made the effort to get some work. Part of me says no, part of me says yes. I worry about whether or not I can do anything, given the way my energy levels fluctuate. I worry that people won't want me, won't want my skills and abilities, won't want my knowledge and experience, all because of the limitations of ALS.
I suppose the bottom line is this; I am a worrier. It is what I am good at. I used to get paid for it; I used to be the designated worrier on the projects I managed. Now all that talent is going to waste. I worry about that too.
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