The Cat 'N Fiddle Pub here in Calgary is hosting a fund-raising auction tonight, the beneficiary of which is the Rosedale Hospice. I am looking forward to being there, to supporting this event and ulitmately the Rosedale Hospice. We are surrounded by pleas for giving and charity on an almost constant basis. Big Pink is everywhere. The Ice Bucket Challenge was a monster this year. Small societies and charities are forever seeking donations. So why this?
There are a couple of things I really like about this kind of event. First and foremost, I like that the funds are going to a hospice society. This has a very practical impact on me personally; it is almost certain that I will end up in some sort of care at some point, most likely a hospice, assuming I choose to hang around that long. If I leave early, then I will still be at home. Nonetheless many PALS end up in this sort of care.
It's not just PALS who end up in hospice. My friend John, when dying from leukemia, spent his last days in a hospice. Many cancer patients end up there. It is a setting uniquely designed to provide the right kind of care and comfort as we end our days. These facilities become particularly important where the level of care requires heavy medication or special services. Were it not for the hospice, these people would face their end of days in a sterile hospital room, a place where the noise and bustle of clinical care intrudes on the time and space needed for dying. My Dad died in a hospital; I wish it had been hospice care. It would have been better.
Then there is they whole nature of this kind of event. Instead of simply giving money, something we are all encouraged to do, I get to go to an auction, bid on stuff I want, and know that every penny of what I spend will be given to the hospice. The pub will sell beer and food, something that always works for me, but the items up for auction, all $40,000 worth, have been donated. It is a great blend of charity, fun, and just a bit of self-interest. It's all easier to do.
Finally there is the social aspect of this kind of event. I have been to any number of charity events. As an extrovert, I inevitably prefer those which allow for social interaction, those which offer an opportunity to be active with other people. The Cat 'N Fiddle is one of my favourite hangouts; I go there at least a couple of times a week. I know the staff and many of the other "regulars". I like it there, often staying well past "closing time". In fact I will probably do that tonight. It's going to be fun; I want the fun to go on as long as possible.
Friday, 14 November 2014
Thursday, 13 November 2014
Couch Potato
Yesterday was a very quiet day. I got out of bed at noon. Home care came for my exercises at 1:00 PM and left at 2:00 PM. I wrote and surfed on the internet until about 4:00. Then I did something unusual; I transferred from my wheelchair to my nice leather couch, the couch I sit on so rarely but would like to sit on a lot more. I took a nap until about 8:00 PM, then watched TV until about midnight.
Then I began the process of getting off the couch, back into my wheelchair. Normal people don't think much about getting off the couch, unless they are extreme couch potatoes. Normal people just stand up. I, on the other hand, have a whole process I have to go through, rather like a mini-project. I need to consider the method of approach, the tools needed, the risks involved and what to do if something goes wrong.
For example, I need to have a plan for recovery should I slip in the process, winding up in a lump on the floor. It happens, not just to me but to others in wheelchairs too. One of my PALS once told me the story of falling while transferring, then laying on the floor all night until help came. Since I live alone, I need a better plan; I have one. If I slip to the floor, the first thing I will do is unlock the wheels on my wheelchair so I can push it in front of me. Once positioned, I will slide along the floor, pushing my wheelchair until I get to the sling lift in my bedroom. Once there, I will reach up and turn on the lift, lower it down, strap myself in including using the leg straps since I will be both exhausted from the effort thus far and since the lift will be a high one. Then, once levitated, I will pull myself over to where I have previously positioned and locked my wheelchair, and finally lower myself in. You see, I have a plan for that risk. It's not simple, but it's a plan.
But what about if I fall and hurt myself, perhaps twisting a knee as I have done in the past? In that case I will need my cell phone to call 9-1-1. The front door of my apartment is unlocked, so they won't have to break it open. I keep it that way while I am awake just in case something like this should happen to me. In this situation, I make sure my cell phone is near at hand, close enough that I can grab it even from an injury position on the floor but in a place where I won't knock it to the floor during the gyrations of transfer. That risk is managed; not well, but managed.
Then there are the tools I need. I try to use my transfer board for some of these riskier transfers. Last night, however, I had left it in the bedroom from another transfer. So this time it was a careful placement of my wheelchair, removal of the ottoman from the work space, and a lifting transfer from the couch to the edge of the chair. Then I wrestled myself upwards enough so I could grab the wheels and finish lifting myself into place, pushing my body upwards into a sitting position.
I made the transfer successfully. It's a lot of effort just to get off the couch.
Then I began the process of getting off the couch, back into my wheelchair. Normal people don't think much about getting off the couch, unless they are extreme couch potatoes. Normal people just stand up. I, on the other hand, have a whole process I have to go through, rather like a mini-project. I need to consider the method of approach, the tools needed, the risks involved and what to do if something goes wrong.
For example, I need to have a plan for recovery should I slip in the process, winding up in a lump on the floor. It happens, not just to me but to others in wheelchairs too. One of my PALS once told me the story of falling while transferring, then laying on the floor all night until help came. Since I live alone, I need a better plan; I have one. If I slip to the floor, the first thing I will do is unlock the wheels on my wheelchair so I can push it in front of me. Once positioned, I will slide along the floor, pushing my wheelchair until I get to the sling lift in my bedroom. Once there, I will reach up and turn on the lift, lower it down, strap myself in including using the leg straps since I will be both exhausted from the effort thus far and since the lift will be a high one. Then, once levitated, I will pull myself over to where I have previously positioned and locked my wheelchair, and finally lower myself in. You see, I have a plan for that risk. It's not simple, but it's a plan.
But what about if I fall and hurt myself, perhaps twisting a knee as I have done in the past? In that case I will need my cell phone to call 9-1-1. The front door of my apartment is unlocked, so they won't have to break it open. I keep it that way while I am awake just in case something like this should happen to me. In this situation, I make sure my cell phone is near at hand, close enough that I can grab it even from an injury position on the floor but in a place where I won't knock it to the floor during the gyrations of transfer. That risk is managed; not well, but managed.
Then there are the tools I need. I try to use my transfer board for some of these riskier transfers. Last night, however, I had left it in the bedroom from another transfer. So this time it was a careful placement of my wheelchair, removal of the ottoman from the work space, and a lifting transfer from the couch to the edge of the chair. Then I wrestled myself upwards enough so I could grab the wheels and finish lifting myself into place, pushing my body upwards into a sitting position.
I made the transfer successfully. It's a lot of effort just to get off the couch.
Wednesday, 12 November 2014
It's Wearing Me Out
I hurt today; not the cruel kind of pain that stabs deeply, it's the general shallow ache and soreness that is so much a part of my everyday life. Only today it is broader in scope, deeper in nature. It starts in my fingertips, moves through my hands, into my wrists, up my arms and into my shoulders. My neck hurts. I am tired, worn out already and it is only the start of my day.
Sometimes it's hard to tell if the aches that I feel are ALS or age related arthritis. After all, I am nearly 60 years old, a time when a great many people suffer from general aches and pains. Perhaps some of it is just plain getting older. The pain in my fingers and maybe my wrists certainly reminds me of the arthritic pain I have felt in the past. On the other hand the pain in my arms and neck is muscular, not joint pain. I can tell; it's different, the kind of pain that has only started since ALS decided it wanted my upper body.
Part of the pain is simple muscle usage. I use my arms so much now; there is nothing I do that doesn't require me to put them into action. The problem is, of course, that there is no gain to go with this pain. No amount of exercise will build muscle where neurons are failing to send the proper messages. The workout has no upside; I just get to hurt from it.
Another part of the pain is "nerve" related pain. My nerves are working overtime, frantically trying to maintain current connections and even build new ones to replace failed connections. All of that work takes energy, leaving my arms, and the rest of me, exhausted even when I am not tired. My general loss of muscle tone adds to that tiredness, that inability to push myself just a bit further.
A couple of people have said lately that I am "looking good". Appearances are deceiving with ALS. They can't see inside my arms, or under my clothing. They can't see the weakening muscles, the cottage cheese surface of my skin where atrophy is actively taking place. They can't see the exhaustion, the pain. All they see is the cheerful man who isn't letting all of this nonsense stop him from living. Only it's getting harder and harder to be cheerful, especially on mornings like this.
I hurt today. I hurt yesterday. I will probably hurt tomorrow. That's just another fact of my life with ALS. It's not bad pain, it's just another thing wearing me out.
Sometimes it's hard to tell if the aches that I feel are ALS or age related arthritis. After all, I am nearly 60 years old, a time when a great many people suffer from general aches and pains. Perhaps some of it is just plain getting older. The pain in my fingers and maybe my wrists certainly reminds me of the arthritic pain I have felt in the past. On the other hand the pain in my arms and neck is muscular, not joint pain. I can tell; it's different, the kind of pain that has only started since ALS decided it wanted my upper body.
Part of the pain is simple muscle usage. I use my arms so much now; there is nothing I do that doesn't require me to put them into action. The problem is, of course, that there is no gain to go with this pain. No amount of exercise will build muscle where neurons are failing to send the proper messages. The workout has no upside; I just get to hurt from it.
Another part of the pain is "nerve" related pain. My nerves are working overtime, frantically trying to maintain current connections and even build new ones to replace failed connections. All of that work takes energy, leaving my arms, and the rest of me, exhausted even when I am not tired. My general loss of muscle tone adds to that tiredness, that inability to push myself just a bit further.
A couple of people have said lately that I am "looking good". Appearances are deceiving with ALS. They can't see inside my arms, or under my clothing. They can't see the weakening muscles, the cottage cheese surface of my skin where atrophy is actively taking place. They can't see the exhaustion, the pain. All they see is the cheerful man who isn't letting all of this nonsense stop him from living. Only it's getting harder and harder to be cheerful, especially on mornings like this.
I hurt today. I hurt yesterday. I will probably hurt tomorrow. That's just another fact of my life with ALS. It's not bad pain, it's just another thing wearing me out.
Tuesday, 11 November 2014
Is Peace Possible?
Today is Remembrance Day, or as it was called when I was a youngster, Armistice Day. While the name was changed in 1931 here in Canada from Armistice Day to Remembrance Day, there were a great many men around in my childhood who still remembered that day when the First World War, or as the now ironic propaganda said "The War To End All Wars", came to an end. Today I remember.
I remember my Grandfathers, maternal and paternal, and my Great-Grandfather though I never met him. I remember my uncles who fought in World War II. I remember my Dad, who fought in Korea. I think of my brothers, both of whom served in the Canadian Navy, and my nephew who served with the US military in Iraq. We are a family studded with military medals and service, yet none of the above died in action; we seem to be a lucky lot. Some served in war, some served in peace. They all served.
While I remember those who served in the military, I also think of those who have served and died in the cause of peace, in the advancement of freedom. I think of those innocents whose lives were taken, are still being taken, by those who would use force to advance their political, social, religious, or geographic desires. We talk about those who died fighting, willingly giving up their lives in advancement of their nation's desires. Yet we talk little of all those who died without even knowing the causes or reasons, all those still dying. We need to remember both the willing participants and the innocent victims. War takes them all.
Somewhere in the world today, people will be killed in armed attacks. Innocent civilians will die in bombing raids. Children will be killed in gunfire randomly shot from behind a barricade. Mothers will see their young dead around them. The young will see their lifeless parents beside them. This has been true in all wars; it is still true today. As a nation we are once again at war.
My hope is that one day we will celebrate Remembrance Day as the day we remember what war does to us, both as a people and as a planet. My hope is that one day the idea of using military force to solve a political, social or religious issue will be antithetical to human nature. My hope is that one day all mankind will rise above its own petty greed and selfishness to see that there is a peaceful solution to all things where people are willing to work towards it.
I won't see this in my lifetime. Perhaps it will never happen. We, as a species, are particularly good at killing, and procreating. We will have a constant supply of young men and women who will believe the propaganda, who will listen to the zealots. I wonder if peace is actually possible.
I remember my Grandfathers, maternal and paternal, and my Great-Grandfather though I never met him. I remember my uncles who fought in World War II. I remember my Dad, who fought in Korea. I think of my brothers, both of whom served in the Canadian Navy, and my nephew who served with the US military in Iraq. We are a family studded with military medals and service, yet none of the above died in action; we seem to be a lucky lot. Some served in war, some served in peace. They all served.
While I remember those who served in the military, I also think of those who have served and died in the cause of peace, in the advancement of freedom. I think of those innocents whose lives were taken, are still being taken, by those who would use force to advance their political, social, religious, or geographic desires. We talk about those who died fighting, willingly giving up their lives in advancement of their nation's desires. Yet we talk little of all those who died without even knowing the causes or reasons, all those still dying. We need to remember both the willing participants and the innocent victims. War takes them all.
Somewhere in the world today, people will be killed in armed attacks. Innocent civilians will die in bombing raids. Children will be killed in gunfire randomly shot from behind a barricade. Mothers will see their young dead around them. The young will see their lifeless parents beside them. This has been true in all wars; it is still true today. As a nation we are once again at war.
My hope is that one day we will celebrate Remembrance Day as the day we remember what war does to us, both as a people and as a planet. My hope is that one day the idea of using military force to solve a political, social or religious issue will be antithetical to human nature. My hope is that one day all mankind will rise above its own petty greed and selfishness to see that there is a peaceful solution to all things where people are willing to work towards it.
I won't see this in my lifetime. Perhaps it will never happen. We, as a species, are particularly good at killing, and procreating. We will have a constant supply of young men and women who will believe the propaganda, who will listen to the zealots. I wonder if peace is actually possible.
Monday, 10 November 2014
A Beautiful Woman
About 90 minutes ago a beautiful young woman walked into my apartment. Carmel coloured skin, slender and lithe, only 27 years old, she laughed as she talked to me, encouraging me to get into my bed. There she adjusted my legs and hips, then climbed in, settling herself beside me, focused on what was to come. Her soft hands, her gentle smile, her dark lips and deep brown eyes, all there and waiting for me.
She moistened her lips, spread her knees to steady herself, and grabbed my legs, taking full measure in the effort that is a part of my routine every Monday, Wednesday, and Friday. She exercised my calves, my thighs, my hips and even my arms. She massaged the cold out of my toes and gently held my knees as she raised and lowered my legs. In the end, she left me exhausted, unable to move, ready for sleep. She is good at her work, wearing me out quickly, working me out completely.
It all sounds good, but she is the home care worker who arrives every Monday, a lovely young woman from East Africa. She is all business, focused on the serious work of keeping me as mobile and flexible as possible for as long as possible. Her attentions cause me to ache and groan, as unattended muscles are reminded that, even if there are no signals from my brain telling them to do so, they must yet move. She chatters at me as she works, keeping things light and keeping me moving.
I often think of the comment of another PALS, a fellow now dead, who was fully consumed by ALS. He needed help with almost every aspect of his life, including bathing, dressing and moving about. He once complained that "dozens of women have seen my junk, and not an 'Oh wow' between them." I sometimes wonder what these women think about as they care for my body. I know the thoughts that run through my mind primarily revolve around the pain and ache that even dead muscles can cause. Sometimes I just let my mind go blank, so I can escape the counterfeited intimacy; I leave and go elsewhere, waiting for the job to be done.
It is an odd part of ALS, to need someone, a stranger in most cases, to come and care for you in the most intimate of ways. It is the kind of thing where you need someone with no emotional connection, no intent to move from ersatz to reality, someone who can focus on the business at hand without connection to the emotions involved. I need to be stretched; she is the person who stretches me. That is all.
She moistened her lips, spread her knees to steady herself, and grabbed my legs, taking full measure in the effort that is a part of my routine every Monday, Wednesday, and Friday. She exercised my calves, my thighs, my hips and even my arms. She massaged the cold out of my toes and gently held my knees as she raised and lowered my legs. In the end, she left me exhausted, unable to move, ready for sleep. She is good at her work, wearing me out quickly, working me out completely.
It all sounds good, but she is the home care worker who arrives every Monday, a lovely young woman from East Africa. She is all business, focused on the serious work of keeping me as mobile and flexible as possible for as long as possible. Her attentions cause me to ache and groan, as unattended muscles are reminded that, even if there are no signals from my brain telling them to do so, they must yet move. She chatters at me as she works, keeping things light and keeping me moving.
I often think of the comment of another PALS, a fellow now dead, who was fully consumed by ALS. He needed help with almost every aspect of his life, including bathing, dressing and moving about. He once complained that "dozens of women have seen my junk, and not an 'Oh wow' between them." I sometimes wonder what these women think about as they care for my body. I know the thoughts that run through my mind primarily revolve around the pain and ache that even dead muscles can cause. Sometimes I just let my mind go blank, so I can escape the counterfeited intimacy; I leave and go elsewhere, waiting for the job to be done.
It is an odd part of ALS, to need someone, a stranger in most cases, to come and care for you in the most intimate of ways. It is the kind of thing where you need someone with no emotional connection, no intent to move from ersatz to reality, someone who can focus on the business at hand without connection to the emotions involved. I need to be stretched; she is the person who stretches me. That is all.
Sunday, 9 November 2014
Intuition
I have pretty good intuition, except for a couple of fairly glaring blind spots. I've learned to trust that inner voice that speaks to me about things like what the weather might do, or where the deer might be hiding, or what the fish might find interesting to eat. I'm a pretty good judge of what people might do in a given situation and how they might react. Oddly enough, I even have that kind of intuition around technology; I just know what to do at times without actually being able to explain why I know it.
There is a term for this; it's called "conscious unconscious competency". It means knowing that you know something without actually having to think about why you know it, or without having to go through a complex thought process to respond. You just do, and you trust your instincts, if that's what they are.
Yesterday is a great example of this. I awoke in the morning looking out the window from my Mom's bedroom, wondering at the leaves on the trees and the clouds in the sky. I noticed that the clouds were moving east. I also noticed that they were the kinds of clouds that precurse a change in weather, most likely to be rain on the coast of BC.
Then I rolled over and thought about getting dressed, about whether or not I should go home on Saturday or Sunday, or even if I should stay another week. After all, just a couple of phone calls and emails would free me up until the following weekend, even longer if I wanted. Yet something in me said "go home today." I went to see my Mom in hospital where she is recovering nicely from her hip injury; she will go home soon enough as well. Then I hit the road, with one stop to see an old friend in Abbotsford.
Once I got underway I thought about stopping in the hunting camp to see how the day went. I decided against it, pushing on through the evening. I arrived at the half way point, thinking I should stop for the night, but the hockey game had just started on the radio so I kept on driving. Further down the road I thought I should probably stop for the night, watch the hockey game at a local pub, and rest until the next day; but then the Kings scored a couple of quick goals and I thought to myself, "Do I really want to pay for a hotel and buy beer in a pub just to watch the Canucks lose?" I rolled on into the night.
At about 11:00 PM I drove into Golden. The game was over, a predictable, ugly loss by the Canucks. I looked at hotels as I drove through town and thought to myself, I can be home by 2:00 AM. So on I went into the night. Then the weather caught up with me. As I had crossed Rogers Pass a couple of hours earlier, there had been some light snow and rain. As I headed up into Kicking Horse Pass, the snow get heavier and wetter. The road got slick, even dangerous. Through Banff it eased off a bit and I thought I had gotten lucky, that the worst was in BC.
Then the ice came, or rather that nasty mix of snow, fog and freezing rain that happens early in an Alberta winter. By the time my truck was in my garage at home, it was coated with a glistening ice cover, a cover quickly melting in the heat of the parking lot. This morning I awoke to snow; the sky is white and the roads are a mess. Winter has arrived here in Alberta.
The connection is interesting. Somehow beneath all my surface thoughts, I knew that those light, fluffy clouds heading east from Vancouver would mean snow in the high country. Somehow I knew that the cold of Alberta would meet that moisture soon enough, making the roads dangerous and the drive tedious. Somehow I just knew; go home today, keep driving, don't wait for tomorrow.
Of course it might have been just luck. It might have been my habit to drive all the way back to Calgary in a day. It might have been any number of things. But it happens to me a lot this way, where I just managed to see things coming, at least some things. Sometimes I get blindsided, but not all that often.
There is a term for this; it's called "conscious unconscious competency". It means knowing that you know something without actually having to think about why you know it, or without having to go through a complex thought process to respond. You just do, and you trust your instincts, if that's what they are.
Yesterday is a great example of this. I awoke in the morning looking out the window from my Mom's bedroom, wondering at the leaves on the trees and the clouds in the sky. I noticed that the clouds were moving east. I also noticed that they were the kinds of clouds that precurse a change in weather, most likely to be rain on the coast of BC.
Then I rolled over and thought about getting dressed, about whether or not I should go home on Saturday or Sunday, or even if I should stay another week. After all, just a couple of phone calls and emails would free me up until the following weekend, even longer if I wanted. Yet something in me said "go home today." I went to see my Mom in hospital where she is recovering nicely from her hip injury; she will go home soon enough as well. Then I hit the road, with one stop to see an old friend in Abbotsford.
Once I got underway I thought about stopping in the hunting camp to see how the day went. I decided against it, pushing on through the evening. I arrived at the half way point, thinking I should stop for the night, but the hockey game had just started on the radio so I kept on driving. Further down the road I thought I should probably stop for the night, watch the hockey game at a local pub, and rest until the next day; but then the Kings scored a couple of quick goals and I thought to myself, "Do I really want to pay for a hotel and buy beer in a pub just to watch the Canucks lose?" I rolled on into the night.
At about 11:00 PM I drove into Golden. The game was over, a predictable, ugly loss by the Canucks. I looked at hotels as I drove through town and thought to myself, I can be home by 2:00 AM. So on I went into the night. Then the weather caught up with me. As I had crossed Rogers Pass a couple of hours earlier, there had been some light snow and rain. As I headed up into Kicking Horse Pass, the snow get heavier and wetter. The road got slick, even dangerous. Through Banff it eased off a bit and I thought I had gotten lucky, that the worst was in BC.
Then the ice came, or rather that nasty mix of snow, fog and freezing rain that happens early in an Alberta winter. By the time my truck was in my garage at home, it was coated with a glistening ice cover, a cover quickly melting in the heat of the parking lot. This morning I awoke to snow; the sky is white and the roads are a mess. Winter has arrived here in Alberta.
The connection is interesting. Somehow beneath all my surface thoughts, I knew that those light, fluffy clouds heading east from Vancouver would mean snow in the high country. Somehow I knew that the cold of Alberta would meet that moisture soon enough, making the roads dangerous and the drive tedious. Somehow I just knew; go home today, keep driving, don't wait for tomorrow.
Of course it might have been just luck. It might have been my habit to drive all the way back to Calgary in a day. It might have been any number of things. But it happens to me a lot this way, where I just managed to see things coming, at least some things. Sometimes I get blindsided, but not all that often.
Saturday, 8 November 2014
What Makes Me Happy
I awoke this morning looking out the window of my Mom's bedroom. While I am visiting and she is in hospital, I am staying in her room. Outside the window there is a chestnut tree, it's leaves a mix of mottled yellow-green, gold, and the deep red brown that marks the end of the season. The branches are half-bare, quivering in the light breeze not strong enough to shake the dying leaves free to fall to the ground. Beyond the tree, through the screen of partially clad branches, the sky is a steel blue stretching to the horizon beyond the houses across the street. Light, bright, white clouds drift from the west, heralding another weather system here on the coast of BC, another pattern of rain and wind that will be snow in the high country, making the roads slick and wet for my drive back to Calgary.
When I see things like this, my mind is forced from reverie to wondering. I ask myself if this is the last time I will see this scene, the last time I will witness the colour march here in the fall. For so many things I am compelled to ask myself if there will be another time, if I will see this scene, if I will smell these smells and feel this way. It is a melancholy that forces itself into so many places in my life.
There is a consistency of advice around me these days. "Do what makes you happy." "Look after yourself first." "Do what you want to do." After a lifetime of doing what I think others need or want me to do, focusing on what I want is difficult. In truth, the thing I want to do, the thing that has for many years made me happy, is the first thing I truly lost to ALS - my ability to skipper my own boat to the tiny harbours and inlets that string along this crumpled coast. It is the ultimate cruelty of my experience with ALS, that the things I have loved to do are the things that are lost to me.
I have, of a sort, supplanted the boat with my truck. I like to be on the move. I like to see new places, or see old places again through new eyes. I like the moving panoply alongside the highway, the constantly changing cavalcade of trees and mountains and lakes, the characters of men and beast completing the show as I move along. I am inconstant, unable to stay in one place permanently or even the shortest of time, constantly seeking the next curve of the road, the next horizon line. I need to move; that makes me happy. I have itchy feet.
Of course soon ALS will steal that from me too. Soon I will lose my freedom to move, in my truck and eventually even in myself. This eventually is not long in coming; it's halfway here. I am already in the grips of battle with the thing that will ultimately win out, ending my wanderlust in hospital bound entrapment. When that happens, my only wanderings will be in my mind.
When I see things like this, my mind is forced from reverie to wondering. I ask myself if this is the last time I will see this scene, the last time I will witness the colour march here in the fall. For so many things I am compelled to ask myself if there will be another time, if I will see this scene, if I will smell these smells and feel this way. It is a melancholy that forces itself into so many places in my life.
There is a consistency of advice around me these days. "Do what makes you happy." "Look after yourself first." "Do what you want to do." After a lifetime of doing what I think others need or want me to do, focusing on what I want is difficult. In truth, the thing I want to do, the thing that has for many years made me happy, is the first thing I truly lost to ALS - my ability to skipper my own boat to the tiny harbours and inlets that string along this crumpled coast. It is the ultimate cruelty of my experience with ALS, that the things I have loved to do are the things that are lost to me.
I have, of a sort, supplanted the boat with my truck. I like to be on the move. I like to see new places, or see old places again through new eyes. I like the moving panoply alongside the highway, the constantly changing cavalcade of trees and mountains and lakes, the characters of men and beast completing the show as I move along. I am inconstant, unable to stay in one place permanently or even the shortest of time, constantly seeking the next curve of the road, the next horizon line. I need to move; that makes me happy. I have itchy feet.
Of course soon ALS will steal that from me too. Soon I will lose my freedom to move, in my truck and eventually even in myself. This eventually is not long in coming; it's halfway here. I am already in the grips of battle with the thing that will ultimately win out, ending my wanderlust in hospital bound entrapment. When that happens, my only wanderings will be in my mind.
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