Back To Bed

It is a given with ALS that everything tires you out; it's just a function of the illness that you do not have the strength or endurance you once had. Even something as simple as dealing with other people can be tiring, let alone the stress of the renovations currently going on around me. This morning is a great example.

Today the tile installer is coming to work on my bathroom and the building inspector is coming to sign off on the framing and general construction. Last night I was exhausted from the busy day here, with contractors coming and going, Jim working, me doing errands and picking up supplies. Then, at the end of the day, I cooked dinner. All of this put me in exhaustion mode; I was in bed by about 9:00 PM and asleep shortly thereafter.

This morning I woke up at 7:00 AM, unable to return to sleep thanks to the dual effects of going to bed early and thinking about the various people coming today. I finally gave up at 8:00 AM even though the earliest visitor was not to arrive until 9:30 AM, a few minutes from now. I just could not get back to sleep; I lay abed rolling things over and over in my mind, a useless state. So I got up early.

I have not had a shower in my apartment for over a month now, the old one having been ripped out in order to renovate for the new wheelchair shower. In the interim I have been making use of my skills learned while sailing, the skills associated with bucket bathing and washing, as well as making use of hotel rooms or the local YMCA. This does mean, however, that I don't have the luxury of a morning shower, unless I am in a hotel. So this morning, I did not get up to enjoy a hot shower; I just got up, washed, and got dressed.

Now I sit and wait, anticipating the arrival of sub-trades and the inspector. I get anxious, wondering if they will be on time, wondering if they will get their work done today, worrying that the inspector will find something wrong, something that puts us further back in the process. It's the same worry I had in bed, but at least now I have a coffee in hand and a keyboard in front of me.

All of this is stress. Stress makes me tired. I want to go back to bed now.

Singing

It's crazy busy here this morning. The plumber is in doing so quick fix up work so we can put in a toilet. The tile crew is dropping off tile and grout so the flooring can start tomorrow or Monday. There is a framer coming to repair damage done by the electrician. Jim is going to be working on framing in the shower today. Rosa is coming this afternoon to clean up. That's a lot of coming and going.

Fortunately for me I have Jim. He will handle most of the interactions today. While I have to let people in and out, make decisions and answer questions, Jim will direct most of the work, the hardest part of which will most likely be keeping me out of the way. He is already in with the plumber, working hard on getting the toilet mounted. I haven't had a toilet for a week, so this is a watershed day.

Last night Jim and I went out to karaoke. This is one of his favourite activities; he loves to sing. The love of music and singing runs in our family. My older brother still plays bagpipes, something I did as a teenager along with him. He kept at it while I moved on to other things, like playing the guitar. I love to sing too, something I do often these days, even though my loss of lung function makes it hard for me to sing with the power and duration I used to have; I can't seem to finish a whole song. Peter sings in a chorus and barbershop, and my brother Matthew has a great voice too.

Even though I did not sing karaoke last night, at least not on stage and certainly not a full song, I sang along with many of the other singers, including Jim, enjoying the moment as I could and taking some pleasure in reaching the odd high note. I would get about halfway through a song, and then rest. Jim asked my why I didn't go on stage and sing, and I used a quote he had given to me earlier that evening. We were talking about his life partner, Eric, who died a number of years ago. When Eric was very sick, they talked about death, something the gay community had seen plenty of in the AIDS years. They talked about Eric's increasing infirmity and inability. Eric said to Jim, "When you can no longer climb the mountain, you can get the same excitement by looking at it."

Remembering what I could do, enjoying what I can do, seeing the beauty and wonder in the mountain without climbing it, that's what I was doing last night. I may not sing on stage, but I can still sing along. When I can no longer sing at all, I will sing in my heart.

It's A Dog Fight

"What counts is not necessarily the size of the dog in the fight; it's the size of the fight in the dog." Dwight D. Eisenhower.

As my body weakens, I feel like I am getting smaller, as if I was part of an ever shrinking universe. I can, almost daily, see things become more difficult, see things retreat from me. Distances become farther, reaches become higher, weights become heavier; I am becoming the small dog in a big fight. The dog I face, this disease set before me, becomes larger and more vicious each and every day.

I am tired so much of the time these days. The dogfight starts when I get out of bed, the beast that is this disease snapping and gnarling at my heels from the moment my feet touch the floor. It pursues me as I struggle to dress, it snaps at my arms as they work to push myself into my wheelchair, it growls in front of me as I push my way across the carpeted floor of my apartment.

Even the simple act of making coffee has become part of the dogfight. I must lift up to reach the coffee and the coffeemaker. Adding water means lifting, reaching, holding, carrying; all these things are part of the daily effort to live as normal a life as I can. The best thing about my morning is after I make my coffee, when I can sit in my wheelchair and type. Then, for a few minutes, the dog is at bay.

It seems like everything exhausts me these days, every bit of stress is too much, every decision too hard to make. Yet even with this, I keep fighting, keep biting back, snarling back, growling back at the cursed creature that will be my doom. This is not a choice I make, at least not yet. Exhaustion is not enough to make me give up; it is just a part of the fight.

I am not ready to stop fighting yet. My body and my world may be getting smaller but my spirit continues to be large. I know this is a fight I cannot win; death is a beast that overtakes us all at some point. Mine will come, one day the big dog will get me; just not today. For today, I will win this fight. For today, I will be the dog with more fight in me. For today, I will live.

Wheelchair Access

The other day I wrote about my trip, or rather my failed trip, down to Waterton Lakes National Park. At the same time as I wrote the blog, some of my friends reached out through social media, most notably Facebook and Twitter, to share my experience directly with the management of the lodge. It is a credit to Waymarker Hospitality, and to Toby Farrell, Vice President of Marketing, Sales & Technology, that they took my issue seriously, offered me a compensatory stay at the Waterton Lakes Lodge, and made specific commitments to improving their staff awareness and accessibility.

That entry also generated other questions about how able bodied people could help those of us in wheelchairs. It was true for me, and true of all of us, that until you get to live your life in a wheelchair, you don't know or understand the challenges I, and others like me, face on a daily basis. It is really impossible to "get it" until you are in this place, not so much walking a mile in my shoes as rolling a mile in my chair, or more realistically, trying to find a usable bathroom in my chair.

There are a couple of really simple things everyone can do to raise awareness and increase access for folks in wheelchairs. The first, really simple thing has to do with your own daily activities. Whenever you go into a store, a restaurant, a pub or any public place, imagine yourself in a wheelchair and ask yourself if the location is accessible. For example, are there steps to get in? Would a ramp be possible? Are there low tables as well as high tables? Is there a wheelchair button on the front door? Do the doors allow direct access or is there a turn in the vestibule?

The next simple thing is checking out the washrooms, in particular looking to see if they even have a wheelchair stall or wheelchair accessible toilet. Look for things like a stall door that opens outwards, or if it opens inwards, check to see if the inward opening blocks access to the toilet for someone in a wheelchair. Are the sinks accessible? Can a wheelchair roll under them? Is the paper towel dispenser set low enough that someone in a chair can reach it?

Then comes the hard part. If you notice something that makes wheelchair access difficult, ask for the manager. Tell him or her that you like their location and that you would love to bring a friend next time, except that your friend is in a wheelchair. Educate the manager about wheelchair challenges, and say how unfortunate it is that you won't be able to come back with your friend.

Let them know that wheelchair access isn't just about the person in the chair. It's about everyone with that person, the friends and groups who can't spend their money because of the lack of wheelchair access. Let them know that this is more than a social concern, it is a business concern. Then let them know you would be pleased to come back when there is wheelchair access, but until then, you will likely have to go elsewhere.

That's how you can help.

Failure To Breathe

Another of the PALS in know online passed away yesterday. It was sudden, very sudden. The PALS was online in the morning, chatting and posting on Facebook, then, gone. The next day we got a post that death had come from a "breathing failure".

There are lots of breathing related issues for PALS; most of us ultimately die from breathing related issues. These issues include things like laryngospasm, an uncontrolled/involuntary muscular contraction (spasm) of the laryngeal cords; diaphragm spasm or failure, where your diaphragm and chest wall muscles simply no longer have the strength to expand your lungs; or, choking on phlegm or choking on food. Any one of these can bring a very sudden death, an unexpected death. All of them are ALS related.

I have had minor versions of all of these, and one incident which I would call significant. I've awoken in the middle of the night with throat spasms. Fortunately I was able to calm myself, and once calm the muscles in my throat once again began to function normally. Had I panicked the spasms would have likely gotten worse, impacting my breathing to the point where I would have passed out. Once out, my body would have relaxed and I would have begun breathing normally again. At least that's the theory; with ALS it doesn't always work that way.

The loss of diaphragm seems to be a ways off for me. Right now my breathing capacity seems to be holding fairly steady at around 85% of normal. It has been that way for several months, after an initial decline when all of this started. If I follow the "normal" pattern for people with my kind of ALS, my diaphragm will likely be the last thing to go, and loss of breathing ability is what will end my life. With any luck I will simply go to sleep one night and, while sleeping, stop breathing.

It's the choking thing that really scares me. This is the kind of things that can happen suddenly. It can happen and you can be completely aware of what is happening. I know; it happened to me the other day. I was on my way home from doing some errands and thought I would treat myself to an A&W Mozza Burger. I know they are bad for me, but at this point I don't think they will be the cause of my demise, or at least I didn't think so at that moment.

I bit into the burger and started to chew. Suddenly a piece went down the wrong way. This happens to me more and more as time goes by; I have to be careful when I eat these days. The piece that went down the wrong way lodged in my windpipe in just the right spot, and was just the right size so that I couldn't breath. I started coughing madly, as strongly as I could, but it just wouldn't budge. After a few moments, minutes that seemed eternal, minutes where I could feel myself getting light headed, where I could feel the panic setting in, that piece budged and moved its way up. More coughing, more movement, more air.

Panic subsided. I could breath and eat again. I took a few minutes to recover, then I finished my food. My throat was rough for about an hour and I was once again reminded of how quickly this disease could finish me if it wanted. If my diaphragm and lungs were not strong enough to push out that piece of burger, I would have been done right there, suddenly and without warning. That's how it happens.

Eight Hours Stolen

Sometimes you plan, ask the questions, do everything right, and things still work out wrong. Sometimes you do all you can to make sure that all you need is in place, and then, at that critical moment, you find something is missing. I find this happens most often when dealing with people who really don't understand the requirements you need. For me, these days, this most often happens around wheelchair access. Yesterday was a good example.

It's been a bit chaotic around my apartment lately, with renovations going on. I haven't had a shower in place for a couple of weeks now and even the toilet was removed last Tuesday. Given the turmoil, I had thought it would be a good weekend to get away for a night. My plan was to go to Waterton Lakes National Park, a jewel set in the southwest corner of Alberta, deep in the foothills, right up next to the steeply rising slopes of the Rockies eastern edge.

In preparation I called the Waterton Lakes Lodge, asking if they had a wheelchair accessible room, one with a roll in shower and proper access for someone in a wheelchair. The nice young lady at the lodge said she wasn't sure, so she would go ask the manager and call me back. I was surprised once again that the person at the front desk had no idea about the facilities at the hotel, but then again, this happens a lot. Most people would be surprised to know that many front desk staff in hotels rarely, if ever, actually go into the rooms they are renting out. Nonetheless, the young lady checked and did call back. Sure enough they had a wheelchair accessible room, one with a roll in shower, and it was available for the night. I reserved it.

The drive from Calgary to Waterton is about three and a half hours. I took about four hours, detouring to go the longer way, through Cardston and Leavitt, two smaller towns in southern Alberta. I stopped along the way for a snack, and generally enjoyed the drive through the rolling prairie countryside. As I got closer to Waterton the snow became deeper and the mountain version of winter began to make its presence known.

Arriving in Waterton, I took a few minutes to drive around the village. Most of the cabins and homes are shut down for the winter, as are most of the smaller inns and motels. Only two lodges remain open for the winter, the Waterton Lakes Lodge being one of them. The rest of the town is snuggled deep in snow, icicles hanging from eaves, walkways drifted deep in white. The roads are narrowly ploughed, the park completely abandoned to winter, awaiting the warmth of spring to clear the benches and campgrounds. It was as picturesque as you can imagine, with apple cheeked children playing in the snow and couples walking the deeply set pathways hand in hand, kicking up the lumps of white cloud as they passed by.

I pulled into the lodge parking lot, parked as close to the door as possible and got out. The lot was covered in snow but it was packed hard enough that, with a bit of effort, I could move across the snow by popping my front wheels up and forcing the chair forward. I made it to the door, hit the wheelchair access button to open them, and rolled into the lobby. There an inviting fire, warm stone hearth, and pleasant staff awaited me.

It was at this moment when I got my first hint of trouble. I said to the gentleman at the front desk "I hope you don't mind; I parked pretty close to the door." His response marked the moment. "No problem", he said "you will be moving it in a minute when you drive to your building." This was the moment when I realized that my accommodations were not within the lodge building, but in a separate "cabin" nearby. My first response was to think about how I was going to get from my room to the lounge in the lodge main building. I said to the clerk, "I guess I will be driving to and from the lounge."

At that point he looked at me and I could see the wheels start to turn. He had begun to think about how I was going to get to and fro at the lodge with a foot of snow on all the pathways. He said something about getting someone from housekeeping to help me, but then thought about it some more. He called the manager. When the manager arrived he looked at me, looked at my wheelchair, looked at the snow, looked back at me and simply shook his head. He said "There is no way you can get into the building with all this snow."

I asked him about clearing the snow. He said their snow clearing bobcat was out of service until Monday, and heavy snows were expected overnight. In addition the parking lot for the handicapped building was covered in snow and there was a steep slope up to the door of the building, also covered in deep snow. Apparently their handicapped access is only available in the summer.

I asked him why the girl would book me into a room when there was no access. He tried to defend her actions, saying she must have thought I had an attendant or was confused about what I meant by wheelchair access, to which I responded by saying that I had been very clear. Basically he tried saying it was my fault. He was right, in part. I have learned never to believe hotel staff when asking about wheelchair access. They almost always get it wrong. You have to ask them the most basic, simple questions. Often they answer without actually knowing the reality; they just assume.

At this point I had two choices; I could drive up to Pincher Creek and stay at the roadside Ramada, a hotel with no other services, although there was a Boston Pizza on the next block; or I could just drive home the three and a half hours to Calgary. I drove home, defeated by stupidity, feeling like another battle had been lost with eight hours taken out of my life for no return.

Running Away

The tired arm saga continues, as it will for many months to come. That I would write about it two days in a row simply demonstrates that this is now the forefront issue in my progression. There is a fair bit of muscular pain in my left bicep. It is now extending down into my lower arm and my right bicep is hurting too. What I think is happening here is that my left arm is weakening and I am working it harder to make up for the muscle loss. That means my right arm is working harder too and even though it remains fairly strong, that extra work has an impact.

I also found myself absolutely exhausted yesterday. After a short bout of shopping for bathroom safety rails, or as I call them, "Oh Shit Bars", I came home at around 5:00 PM and managed to sit on the couch to watch a bit of TV. It felt good to get out of my wheelchair and feel like I was sitting like a normal person, or as much like normal as I can with my legs just lying there. Still, I must have been comfortable enough; I dozed on and off until finally waking at about midnight, whereupon I went to bed. I slept until nearly 10:00 AM this morning and even after that I lay in bed reading until nearly 11:00 AM.

The exhaustion is a part of the disease. It is compounded, however by the stress associated with the renovations going on around me. This harkens back to when I was in the middle of my divorce and my stress level was very high. During that time I experienced a rapid decline in my legs and my exhaustion levels were extreme, along with my emotional stress levels. Correlation does not mean causality, it's just interesting to see.

Of course there is a temporary solution to the stress; get out of town for a day or two. This weekend would be a perfect time to make a quick escape, to drive somewhere for a few hours, find a nice place to settle, sit in a quiet lounge and relax for a few hours. Then, after a night in a hotel with a shower and toilet, something lacking in my apartment these days, I could come back Sunday afternoon and get ready for the Monday morning onslaught.

Running away, at least for a bit, is not always a bad thing.

Tired Arms; Less Dancing

I am a bit late writing today, courtesy of the Canada/USA Olympic Hockey Semi-Final. It was a thrilling game with a terrific outcome, at least for Canada. It was also a good way to start the morning, simply relaxing and enjoying the game. It is an activity that does not tire me as much as others.

Of late I find my arms, and particularly my left arm, tiring more easily and hurting. I suspect this is a result of the start of de-nervation and muscle atrophy in my arms. My left arm is now measurably weaker than even a few weeks ago. This decline is predictable even though we had all hoped it would be a while before it began. Yet here it is, and this is how it will go, until my arms are so weak I cannot use them at all.

The loss of my arms will have substantial and far reaching effects on my life. As the weeks go by from here it will become increasingly difficult for me to do things like driving and cooking. I will still do what I can for as long as I can; this process could take upwards of a year to get to the point where my arms have failed completely. Nobody really knows what might happen along the way, although it looks fairly clear.

Already the loss of my arms is having an impact. One of the things I have enjoyed, even in the wheelchair, is dancing. When I go the Name That Tune or when I go out to social events, I have a great time getting my wheelchair rocking and rolling, moving about and even doing the odd slow dance, with my arms as the driving force for motion and mobility. This is now becoming a problem. The tiredness in my arms makes it harder to move my body, and my legs, oddly enough, develop a kind of pain in them that I can only assume is nerve based, a result of the nerves trying to fire into the dead and disconnected muscles. All in all, I tire very quickly and simply cannot continue.

I'm not done yet; I'll keep going as long as I can. It will just be fewer dances, slower dancing. I can still enjoy the music and fun. All I have to do is learn to enjoy it more from the sidelines than in the middle of the action. I can do that.

Long Term Disability

It's going to be busy around here today. The electricians were in yesterday to do some work in my bathroom. They have to come back today to finish. The plumber was supposed to be in yesterday too, but he was delayed at another job so he will be coming in today instead. Jim will be working with the plumber during the day to get the trench drain in place. Once all that is done, and the rest of the plumbing is roughed in, we can repair the damaged gyproc on the common wall with the next apartment and then call for inspection.

Things are moving along slowly, but consistently, with my bathroom renovations. I am hoping that my shower will be in soon; I am getting tired of washing while sitting on the toilet; while the plumbing is being changed I don't even have that. It will be true luxury when the dual shower heads are in and the shower is working. It will be so nice to have a proper handicapped toilet and wheelchair accessible bathroom sink.

This is an expensive disease, something I have talked about in the past. Between wheelchair costs, truck modifications, apartment renovations and general costs, I am probably into it for somewhere in the realm of $50,000 by now. On top of that, consider my lost income due to my inability to work, and you are looking at somewhere in the are of $150,000 that ALS has taken from me so far. And it will keep on taking. I'm probably not going to live long enough to get to renovating my kitchen, and I can't afford it regardless. I will soon need a different bed, or box spring to be exact, and there will be more costs including things like medications, compression socks, and lots of smaller things. Oh, and there is always Rosa; I need housekeeping support, something else that comes as a result of ALS.

I am considering setting up a GoFundMe.com campaign to solicit donations to help me with these costs. However I feel very awkward about this. We were brought up to be self-sufficient, to look after ourselves. We were taught that to accept charity was to be in someone's debt, a poor position to be in. Welfare and "the dole" were for those who failed to plan for their life. There is a level of embarrassment to be brought so low by something I completely failed to plan for. Maybe I should have stayed at a steady job with group insurance and long term disability benefits. It's too late now, so there is no point in looking back.

Words

We all have parts of us that we would like to change. We have a lifetime, some of us, in which to change them. And yet, even with that lifetime, so many of us, me included, are saddled with those things within us that we simply seem unable to change. It is as if our genes are programmed around a behaviour pattern, and no amount of nurture, self-talk, interpersonal coaching, relationship training or whatever we do can change those things.

I know for myself it is my willingness to say whatever is on my mind at the moment it occurs to me. I can remember being hurt as a child when my Dad would yell at me "Why don't you think before you talk?" Of course it is ironic to think that it was him I was emulating most of the time. Yet it still happens, I open my mouth and words plop out without any thought on my part as to how those words might hurt others. I did it to Jim just the other day; fortunately he and I worked things out, but it was another reminder.

It's not that I don't know the power of words; if anybody knows about words, it is I. Words are my tool in life, my stock in trade, the way I manage and manipulate the world around me. I have always been this way, always had the skill of telling a good story, framing ideas and concepts to shape my needs using words. In battle, they are my weapons, like the guns and grenades of the soldier. I can use words to slice thinly or cut thickly, to clear and cloud, to uphold or tear down.

Yet I am oftimes clumsy with this tool, unaware of the power of what I say, unaware of how much people imbue into what I see as a simple offhand remark or light-hearted humour. I am not highly self-aware sometimes. I regularly say things without even knowing what I am saying or how it will affect others. So while words may be my tools, I have yet to hone a craft so fine as some, yet to learn that these weapons are dangerous without proper handling.

Perhaps this is why I have never become a great politician or business leader. I have my tools but am not skilled enough to know when to use them and when to stop. No matter, this is as far as words will get me. Soon I will lose the power of speech, soon I will lose the ability to use a keyboard, soon I will become mute; no more words will come from me. Then what?

No Panic Attack This Morning

A week or so back I was having trouble with being too cold, shivering while in bed. Last night it was just the opposite; I sweat so much I left stains on the sheets so bad that it is time to change the bed again. This is getting to be a nuisance. I didn't sleep much last night either, a combination of worry over apartment renovations and general insomnia. To top it all of, I woke up early and simply could not get back sleep.

At least the dreaded anxiety attacks seem to be over. While I was at the ALS clinic the other day, a routine event so common now that it doesn't really even deserve a blog entry, I talked to the neurologist about my depressive episode and my panic attacks in the mornings. He suggested we look at a mild anti-depressant. I was reluctant at first, having dealt with Prozac a decade ago, a medication that left me feeling like I was only half-way there. The only thing Prozac really did was make it easier for my ex-wife to manage me.

Then we went on to talk about Pseudo-Bulbar Affect, a problem which seems to be getting worse for me. I come to tears for things all out of proportion to their importance. It is beginning to make me uncomfortable in public, lest an episode happen at a completely inappropriate time. There is a reason the refer to it as Inappropriate Emotional Expressive Disorder these days, rather than just PBA.

When I described what was going on, the neurologist pointed out that a milder dose of the same anti-depressant would help with the PBA, so I agreed to start taking it. It is interesting that in as soon as a few days I can see the difference. The doctor said it would take a few days to cut in, but I was expecting something more along the lines of a week or so. I don't know if this is simply a placebo effect or if the new drug is helping that quickly; I don't care. I was on the rise anyway, this is just a plus.

I woke up this morning after a rugged night, a night thinking about renovations and changes and all kinds of other things, a night spent worrying for no reason about things that need not worry me. This is not a new behaviour. The new behaviour was waking, expecting the anxiety and panic attack, and not getting it. This is a much better way to start the day.

Freedom

It was another slow day yesterday, the only highlights being phone calls from Kate and my Mom, and a Skype session with my daughter Meaghan and her daughter Charlotte. Technology is a wonderful thing, allowing us to be in contact with family and friends despite the distances between us.

Technology, and particularly the Internet in the last couple of decades, has done much to allow people like me to live independently for longer, to be free in our own homes to live our lives as fully as possible without the chains of disease trapping us completely. Even as I move into end stage, advances in technology will allow me to live longer, and hopefully better, than ever before.

The challenge I face is whether or not to use all these technologies, to ask myself if life in any form is worth it, if technology will simply prolong my life's duration without improving its quality. It is the age old question, just because we can do something does that mean we must? At a minimum I am free to make these choices. While I am steadily losing my independence, I will maintain my freedom for some time to come, my freedom to make the choices that will decide how, and how long, I live.

Freedom; the ability to make the choices in life, to define my future for myself. Technology can help with independence yet I do not believe it helps, ultimately, in attaining and maintaining my freedom. Sure, we have seen technology, and in particular the Internet once again, help nations gain political freedom and groups gain social equality yet I would argue that personal freedom, ultimately, is gained through the toil and struggle of those who would accept, and demand, the rights and responsibilities that go with that freedom.

Freedom means responsibility, the responsibility to make the hard choices, the responsibility to speak up for what you believe, the responsibility to stand against those who would take away my right to make the choices in my own life. One day, not today, not tomorrow, but one day, I will have to make the ultimate choice, the choice to live or die. I want to be free to make that choice; I accept the responsibility of its outcome. Once life has ended, I will then be truly free.

If A Tree Falls

I spent about 40 minutes on the phone with my daughter, Kate, this morning. Talking to her is uplifting for me; she is smart, insightful, kind and generous. Her life's experiences have taught her a lot and she is choosing to take the good lessons and do something with them. I don't think there is much more you can ask for as a parent; to have strong, self-sufficient, hard-working, honest and caring children. I got that.

We talked for a bit about something which has been on my mind of late, something that has troubled me since my symptoms started to become more invisible, hidden by my wheelchair and my life alone. These changes in my body are largely unseen, failed leg muscles hidden by clothing, exhaustion masked by late mornings and early evenings, failing fingers excused away as simple clumsiness. The struggle of getting in and out of bed goes unseen, as this intimate part of my life is mostly lived alone.

When I need to go pee in a jug, I hide away in my room; nobody really knows for real what this is like. They say, "Why not just use the toilet?" What they don't see is the struggle and work needed to transfer out of my wheelchair, the precious time and energy consumed in this process. When I go out, I use my energy to appear vibrant, full of life. When I am in social settings, mostly I just look like a regular guy, only in a wheelchair. If you didn't know better, you would wonder why I am in the chair at all.

It's like the old philosophical saying "If a tree falls in the forest and nobody is there to hear, does it make a sound?" Katie's version is funnier; "If a man makes a mistake in the forest and his wife is not there to tell him, is he still wrong?" The truth is that I am, in most cases, the only one to truly witness this process, the only one in the real firing line. It must be very difficult for those around me to understand some of this, especially when so much of it is like the man behind the curtain, with me, through action, mood and behaviour, telling them to ignore it.

I try very hard to tell it like it is, to be open about what ALS is doing to my body and my life. Even with that, with my frank expressions of what is happening, I often feel alone in this process, in the forest with nobody to hear the sound, or perhaps with nobody to tell me I am wrong.

A Lazy Saturday Morning

It's quiet. Beyond the gentle, low hum of the freezer now ensconced in my dining room, there is no noise. The street in front of my building is quiet. Jim is not here; the TV is off. There is no noise of bustle or activity. Even the wind is still; my tree stands motionless, not even the birds moving about in the branches. It is as if there was no sound anywhere, as if all the world was voiceless, or perhaps as if I am near deaf. It is a restful place, a calm place, a gentle place.

I like mornings like this. I am getting to enjoy them more and more. There was a time in my life when mornings were active, bustling times, where children were getting dressed to head off to school, where work of my own beckoned, either from my home office downstairs or my work office in some far off building where the world of business seemed to never end. There was a time in my life when morning meant new things to do, new places to go, new people to meet. And sometimes the morning was simply a reminder that, as the sun rose in the east, I had worked all night and forgotten to sleep. Now, peace rules the morning, at least most days.

I need sleep these days, not less than about 10 hours a night. On top of that it is not uncommon for my to nap an hour or so in a day. My body is at war with itself, the forces of life trying desperately to slow the destruction of motor neurons, working to build new nerve pathways, trying valiantly in a losing cause to keep what muscles I yet have working, pliant, supple and strong. The forces of death are simply working inexorably, working to kill motor neurons, working to stop my nerves from communicating with my muscles, like dwarfs below the deep, dark earth, tunneling relentlessly, stealing my life, the gold of my existence.

It becomes clearer each day, as a new weakness sets in. I drop things because my fingers are losing grip. My arms tire when I lift them, not the tired of muscle exhaustion, it is the tiredness of neurons screaming across the gap of contact to dying muscles on the other side; not visible exhaustion from work, but invisible exhaustion from the hidden efforts at the root of making those muscles work.

Not all of this is bad. Not all of this is sad. It is simply life working as it does, quietly, softly, slowly taking its time with me. It is a lazy Saturday morning writ large.

Life, Pain, and the Whole Damn Thing

It's not just me; yesterday's busyness left my brother Jim in a state of pain and stiffness unlike any I have ever seen in him. Oftimes to look at him, you would think him 20 years younger than he really is. On one occasion, some years ago, he was mistaken for Kate's brother, not my brother. He is physically fit, strong and durable. Yet even he gets worn down through the effort of rebuilding my bathroom.

Fortunately my friend Mike is coming over to help Jim today. I dread to think what it might be like if Jim had to work through all his stiffness to accomplish what needs to be done today without someone capable to help him. I am continually grateful to those around me who are helping to make this part of my life as livable as possible. When they talk about prognosis at the ALS clinic, the loss of muscle and limb has almost no effect in terms of quality of life. People adjust to these physical changes. What truly impacts quality of life is the emotional fabric that supports the patient. In my case my brothers, my Mom, my friends and my kids all make up that fabric, something that, on more days than you can imagine, keeps me wanting to live.

Reasons to live are reasons to get up in the morning, reasons to choose life over death. I have reasons to live although in the depths of my depression I would argue otherwise. I have people about me, people who reach out to me daily, sometimes several times in a day, people who care and want to see me live my last months with a sense of dignity and joy. These people, the ones beside me on this journey, are my most powerful reasons to live. There is a reason we use the expression "near and dear"; I have a community close to me and I am a part of it.

Still, I wish I was closer to my children. My two oldest daughters dropped their respective daughters off at my Mom's place yesterday. I would have loved to have been there, to hear the sounds of children laughing, to see them hug each other at the end of their day, to watch them doing something as simple as watching TV. This is the toughest choice I have to make at this time of my life; to leave my incredibly strong support community here in Calgary and attempt to rebuild it in Vancouver so that I can be near my children and grandchildren, or to stay here in Calgary, where I have this strong support network, and miss my children as much as I do.

Life is not easy; sometimes not on the body, sometimes not on the spirit, sometimes not on either. Life constantly presents us with these kinds of choices; to stay with one pain or move on into a different one. Life makes us work to keep it. It's not easy, but it is, at least for me right now, better than the alternative. That's why I don't take the pills; you know the ones I am talking about.

A Good Kind Of Busy

It's a late post today, reflective of the kind of day I have been having. It's been busy with multiple things going on at the same time. I woke late this morning, tired after a rough day yesterday. The Home Care Case Manager called almost as soon as I had gotten up and we arranged for her to come early; the original plan had been for her to come at 1:00 PM, a time which would have severely impacted Jim's ability to get stuff done today. Then, after she was done with me, Jim had things for me to do; I actually got to help today.

The Case Manager arrived at almost 11:00 AM on the dot; I hadn't even had my morning coffee yet. I am glad she did; that way we could have our conversations while Jim was getting ready for his day. It was a long meeting, filled with all kinds of questions about how I am living, who is helping me, what I am currently capable of doing for myself, what health and physical challenges I am facing, and how I am feeling psychologically. The whole interview is a bit scary, kind of daunting actually.

One of the challenges I face with having Home Care in is that it recognizes another milestone in my life, another intervention based on my ever increasing inability to care for myself. It is the next measurable step down the pathway to dependence and complete limitation. I fight this fiercely yet still I must admit to the reality of my condition. In this situation, maximizing my expressions of independence and minimizing my need for help actually works against me. I am forced to tell it like it is.

The one part of the process that truly concerns me is that the Home Care assessment is done only once a year. This is fine where you have fairly stable or slow moving conditions. With ALS, there is this odd combination of progression where it might be slow at one point and fast at another, but over time there is a consistent march to the end of the line. The train is coming and I am tied to the tracks; it may change pace but it will never change destination.

The Case Manager assured me she has worked with ALS patients and they will do a consistent re-assessment as my condition progresses or if there are major changes. That's another problem; ALS is a disease of incrementalism, nibbling away at my health and well being. Yet this is the system and I must work within it, or pay the price of working without it.

Anyway, once the trial of assessment ended, I jumped into action with Jim and we have being going gangbusters since then. It's been a busy day, a good kind of busy.

It's Better To Feel Happy

I woke this morning feeling good, not feeling the panic and anxiety that has accompanied my waking moments for so many days now. I've spent what seems like months deep in a depression, although it certainly cannot be that long. I've struggled with it, feeling myself slide deeper and deeper into the mire that is that place of dark emotion. I hit bottom sometime in the last couple of weeks; I know this just by looking at what I've written.

It must have been hard for some of you to follow that journey, to glimpse into the dark places where my spirit crept, to know of the hidden anguish that came along for this ride. Yet it must also be enheartening to see that this depth is not a permanent residence, but a passing tide. For me the last couple of weeks have been a climb out, my emotions grasping at handholds and helpers, snatching bits of ground as I climbed upwards, sliding back down into the mud of emotions as I let go along the way.

Today I can see light. Today I can see a better day. I awoke this morning, for the first time in many weeks, looking forward to my day, without a thought about my ALS. Even as I muscled myself about the bed, it was not ALS I was thinking of; it was getting out of bed. It was not death that haunted me; it was a positive feeling about living and being alive. While the normal challenges of toilet and dressing were with me, they were not onerous; they were just a part of my morning.

When I was out with my friends at Trivia last night, I told them I was "sick and tired of feeling depressed". While the general consensus is that I have a good reason to be depressed, were it not for the support and care of those around me I might have stayed there. Having bad things happen is not what drives depression; for me it is the loss and lack of hope, and the fear of how this will all end.

I know how this will end. Along the way it might get scary but I have a wonderful support network, both here and out on the coast. I have great friends, some I have known for a few years and some I have known for nearly a lifetime. I have a family that loves me, children that love me, a life to live and look forward too. While this may be a tough trip over the next year or so, I want to be happy while I am here. It's just better that way. I appreciate what I have been given in life, and that makes all the difference.

I Can Still Wipe My Own Ass

I had to throw away a piece of soiled clothing this morning; well, I didn't actually have to throw it away, I chose to throw it away. Sometimes things are just not worth what you have to go through to save them, be it clothing or relationships or other things we think we own but actually own us.

Given the challenge of getting out of bed, getting into my wheelchair, making the wheelchair dash to the toilet, transferring from the chair, and finally getting my underwear off, it should come as no surprise that on occasion, despite Olympian efforts on my part, it is a race that I do not win. Sometimes you get the bear, sometimes the bear gets you. This morning it was a near run thing, not quite a tie, but clearly not a losing effort. This morning, after reviewing the damage, I just said "to hell with it" and decided to start fresh.

This is not a particularly bad thing; I have friends with perfectly good legs who have told me this thing has happened to them too, that a sudden onrush of physical need found them half way to the promised land. The only issue I have is the greater likelihood of this dance, such as it is, happening to me because of my dead legs and weakening arms. Yet even with this, it will not be the ultimate unfairness; there is more to come. I know this is true.

In the seminal book about this disease, "Tuesdays With Morrie", a book recommended by my friend Bobbi and given to me by my friend Anna, the protagonist, Morrie, talks with the writer, Mitch, about the challenges of ALS. He concludes by saying "This disease doesn't have me as long as I can still wipe my own ass." As the book progresses, and the disease progresses, this becomes a marker of progression. As Morrie's disease takes him to its irretrievable conclusion, as the last days approach, he says to Mitch, "It got me; I can't wipe my own ass."

This will come to me. One day I will look back on this most basic of cleaning activity with wishful longing; the risk of soiled clothing will be utterly unimportant. One day the race to the throne will simply be one of those memories, a thing of the past. One day I won't be able to wipe my own ass.

Handicapped Parking Spots

It's Monday, the end of the weekend, except that I don't work anymore, at least not on a regular basis, so there are no weekends for me. On the other hand, many of my social engagement revolve around the weekend because virtually all of my friends are still gainfully employed. So it should come as no surprise that I was out and about this weekend, off to tea with friends on Saturday then dinner at home with friends on Saturday night, followed by a lazy afternoon in the pub with friends on Sunday and dinner at The Keg on Sunday night. I love to be busy, and social.

It was, however, a tough parking weekend. Almost every place I went, I had troubles with handicapped parking. Some were simple, some were complex, and some were just plain stupid. The first was on Saturday. I went for tea to a Tea Shoppe in a local mall, one with complete outdoor parking. There are a few designated spots, located near ramps to allow access to the sidewalks. They are not well located, nor are there all that many. The parking is not all that well laid out in terms of wheelchair access, but it is sort of workable; this is a common situation with wheelchair parking.

I managed to find a wheelchair parking spot, near a ramp, without a ton of snow covering the pathway or roadway. However there was another car parked beside it, halfway into the handicapped spot. I know it was halfway because I pay attention to the handicapped parking stall marking lines. This person, apparently, did not. I imagine his or her excuse would be that the snow was covering the parking lines. I am sure the other person knew what he or she was doing; the mirror on the car was folded in to allow for a narrow gap between the two vehicles.Actually it's just an excuse for lazy, self-centeredness. It meant I had to take several careful passes to get into the parking spot with enough room to get my wheelchair out. I did it, just another thing added to the difficulties in an already difficult life.

The next two incidents both happened at the same place, in the designated street-side handicapped parking spot on Kensington Avenue here in Calgary. The handicapped parking spot is clearly marked, designated with the required blue sign. My friend who I was meeting there had texted me that there was a spot, and it was empty. When I arrived I found two separate vehicles parked in the handicapped location, neither with a handicapped tag.

I drove around the block several times looking for a spot, hoping to find something that would give me room to get out of the truck. Fortunately just as I was about to give up and go home, someone pulled out from a standard streetside parking spot and I was able to get into it. Since my door opens into traffic in this scenario, it was not without risk. I managed.

As my friends were helping me into the pub, a location with two steps, high tables and no wheelchair washroom I might add, one of the drivers returned to her car. I yelled across the street, telling her she was parking in a handicapped spot. She yelled back saying the city should mark them better. I yelled back pointing out the big blue sign right in front of her. Then her two friends got in the act, yelling out that I was an asshole. So I responded by yelling that only an asshole parks in a handicapped spot without a tag.

I don't think the yelling did much good, but I felt better. More importantly I hope the confrontation springs to the front of her mind when she goes to park in a handicapped spot next time. If not, perhaps the ticket will help her remember; I'm going to call the city parking enforcement authority today and report her.

Still, all of this is frustrating, aggravating, upsetting; feelings and energy I don't need to waste on selfish, stupid, ignorant people who think that handicapped parking is simply a luxury for a few people. Try giving up your legs, try losing your mobility, try getting around with a disability that stops you in your tracks; then you will see why those spots are there.

Shame

There are times when I wake in the morning thinking of my past, of things I have done or said, and I shake with embarrassment at some of them, I shiver with shame as I think about the words and deeds that have fallen from me. My self-esteem is weak; my self-condemnations is strong, well fed by a lifetime of others using my need for validation for their own purposes.

I will not go on to list my personal walk of shame here; many who know me well will know what some of these are, others are so dark and distant that I can only hope they stay forever hidden. Let me make one thing perfectly clear, none of the things where I feel shame are even remotely shameful. Almost every one of them can be ascribed to inexperience, frustration, youth or any number of things; none of them is, or was, "bad", at least not on my part.

Yet I feel these feelings within me. I think a lot of this arises from my childhood. I remember very little of my life from before my parents separated, perhaps a snippet triggered by a story someone else tells. It was, for me, as if life began at around age 8, in 1963, when we moved from Victoria to Vancouver. I remember the ferry ride, my Mother getting a state room for us to hide in, lest my Dad showed up on the ferry to do something bad. I remember the feeling of fear, mixed with the excitement of having my own room on the ferry. For years after I would look at those rooms, I still do today, and think about them, wondering why that memory stands out. Why did I feel shame in having to hide?

Part of it may be the secret. Secrets are a powerful thing. For the childhood that arose from 1963 onward, secrets were a constant part of life. There were secrets that my Dad said we could not tell my Mom, like when we went on bootlegging runs with him. There were secrets that we could not tell others, like when my Dad hid us in the back of his unlit BC Hydro company truck, transporting us into the city to see family and friends. We had a lot of secrets around us, and those secrets caused a layer of shame for me.

My father used shame as a management tool. He would purposely shame us to put us in our place, to ensure we knew he was the boss. He belittled our physical stature and our education efforts, ensuring we all knew he was bigger than us, more powerful, stronger, smarter. Only when we did what he wanted were we free from his reprobation; rarely, if ever, did we receiver his approbation. When we did, it was conditional, almost always with some sort of secret attachment.

I went from my father to a church, trading the shame of one parenthood for the shame of another. Much like my ultimately powerless father, the only power religion has is shame, the belittling power of covenant, constraint and control. Those who would dominate us or control us use the church, whatever it may be, as a tool to lay down their own framework on others and then use holy edicts as a way to shame us into behaving as they would have us behave. God, and life, make us who we are. Here there is no shame.

Even to this day, I struggle with embarrassment. I cannot watch humor where humiliation is the root. I have had to learn that my own forgiveness starts within me and that shame is a tool used by others over me. My own shame is simply those inner voices telling me that I failed to live up to the measurement of my Dad, or my Mom, or my ex-wife, or someone else. My shame is my embarrassment, my failure at perfection, that swing and miss where I crave external validation. Oddly enough, I really have nothing to be ashamed of. So what's the deal with that?

Best Pet

I am empty, like the water pitcher sitting on the counter behind me, void of anything useful to write. While this blog has become a compulsion, or almost a compulsion, it is a hard task-master, sitting here empty, as empty as I, awaiting something to come from my fingertips.

In moments like these, I reach for a card, one of the 52 cards which Kate gave me for Christmas in 2012. On each card, some decorated, some not, Kate has asked me a question or proposed a blog topic. I've used a great many of these cards, precious gifts that they have been, to answer her questions, some obliquely and some directly. I am comforted in knowing that at least once a week I have had a topic given to me, although some arrived finding me unable to answer their call.

The box is dwindling; I have not used them all. I used them unwisely at first, reading them and not necessarily writing about them, hoarding them in bundles until I had too many, discarding them because I simply did not know how important they would become to me, not just for their content, but for their intent. I regret that. I now know that each of them was a light, a beacon of hope for me. I wish I had each and every one of them back, so I could re-read them, so I could write about what she asked, so I could savour the feel of crisp card stock, admire the small decorations, enjoy the patterns on the outside and messages on the inside.

Today Kate asks me to write about the "best pet I ever had". I've had a few pets over time, or lived in households with family pets. As a kid, back on the "farm", such as it was, back in Stave Falls, we had cats, both feral and household, we had farm animals, including the requisite cows and horses and ducks and chickens and pigs, and we had Sheba, our faithful Collie-Shepherd cross. Yet none of these was my pet. The horse was ostensibly mine, at least it was my responsibility to break and train the horse. It was my first real animal, yet it was not what I would call a pet.

I wandered about for the couple of years between leaving home and returning to go back to college; I ended up living with my Dad in the fall of 1974 and heading off to Abbotsford and Chilliwack for night school classes in January, 1975. We had no pets at that time. In fact my next animal responsibility was both a dog and a cat I acquired while living in a mobile home on Clayburn Road in Abbotsford in 1976. It was a short engagement with the cat disappearing one day and the dog going to a home up the road, as far as I can recall.

Between then and recently there were guinea pigs, a few birds and one notorious cat who ended up in the home of a friend fairly shortly after it used my body as a climbing post, scratching me from head to foot in my kitchen one day. After that, there was a pet void for almost 20 years; children with allergies precluded pets with hair.

Then, a few years back, we got Sophie, a Schnauzer-Poodle cross, referred to as a Schnoodle. I will confess that we spoiled Sophie pretty much from the moment she came to us as a puppy. She was in charge and there was no doubt about it. Neither my wife nor I could make the commitment to taking Sophie to obedience training; she felt I should do it and I felt she should do it. Neither of us really wanted to do it; perhaps we liked having Sophie in charge. Sadly, on the day of my daughter's wedding, Sophie, every the greedy eater, got into something, perhaps grapes, that caused her kidneys to shut down. She died a few days later.

After Sophie came Remy, a dog Meaghan and I picked up after she spotted an advertisement online. Another Schnoodle, or at ostensibly so, he lived with a family in Burnaby and they had just had a baby. The dog and the baby were problematic, so we took Remy and he came to live with us in the fall of 2009. He is, or was, in my case, a great dog.

The previous family had taken the time and care to train him properly, something that would likely never have happened had we raised him from puppyhood. He was always happy to see me, and recently when I got to see him on a return visit to Abbotsford, he was still happy to see me. He was obedient, but not to a fault, still able to create enough mischief to give himself a personality. He barks too much, leaps up too much, has trouble sitting still at times, and was almost always the happiest one in the house during those last years of my marriage. Whether by time or personality, he stands out as my "best pet".

A New Measure For Success

It's one of those kinds of mornings this morning, the kind where you feel like doing nothing at all, where laying in bed until noon seems like a reasonable thing to do with your day, where plans and things to do seem to fall away like shedding skin, dropping off and leaving nothing but lethargy behind. It's that kind of morning where the warmth of the blankets and comfort of a pillow defeat even the urgency of the bathroom, or in my case the jug. At least I get to go pee without actually getting out of bed, simply rising, sliding my legs over the edge, grabbing the dreaded container and letting nature take its course, then, after a quick hand wipe, sliding back into the warm void I left just a moment ago. I am thankful for hand wipes.

I was out late last night, getting to be at around 1:00 AM. Given my need for at least 10 or more hours of sleep each night, it is no surprise that wakefulness did not arrive until nearly 11:00 AM and getting up waited until near noon. Even with that I am still tired; I've already considered returning to bed for another hour or two of shut eye. I am finding this to be consistent. If I want to get up at 7:00 AM, I need to go to bed by 9:00 PM. If I want to be up in the mid-morning, my normal 11:00 PM will do. Late nights make for very late mornings. Short nights can happen; they make for a very worn out Richard.

I am still struggling with shivering. Yesterday, in spite of being busy and in a well heated apartment, I started shivering in the mid-afternoon. I put on a sweater, something I thinking about doing right now. Last night, in the middle of the night, I awoke to that feeling, the subtle onset of a full blown shiver, the goosebumps on my arms and legs, the slight shiver in my torso. I also had to go pee. I managed both events to a safe outcome this time, donning one of those quilted undershirts I like to wear, and taking a pee break before the full blown shiver came one. I did well, having only the slightest of shaking once I was back under the covers and warm. Then, as the full warmth from the shirt spread over me, I settled and was able to get back to sleep.

Success is a funny thing. Here I am feeling like I successfully managed my night. In reality I would have managed better if I had started the night in a night-shirt, something I have never worn. I would have done better if I had started the night in pajamas, something I don't own and haven't owned for many years. My nights are spent in boxer shorts and nothing else, at least until lately. Yet here I am declaiming success for the simple act of putting on a shirt and not wetting my own bed.

ALS does funny things to you; this is one of them. Success is now doing what most would consider normal. I have a different normal now. I slept well, warm and dry. This has become my new measure of success.

Dealing With Feelings

It's funny how your emotions can turn around, not on a dime, not in some manic swing, but for the better, with only a little help from your friends. Yesterday I was feeling the frustration of all this, the passage of time with only small advances in my renovation project, the passage of time with the continuing loss of my life and freedom, the passage of time separated from my children and grandchildren. Yesterday I was still feeling the depression and distress from earlier days.

The day itself went like most other days. Jim did a bunch of work on the doorway to my bedroom. In fact the principal construction associated with the bathroom and hallway is pretty much done. He doesn't think he will do the hall closet; he's not sure he has the time and he feels I don't need it, so it can be left the way it is. As frustrating as this is for me, my only other choice is to hire a framer to do the work. Doing that seems almost disrespectful to Jim, as if I was betraying all that he has given me lately. So I have to deal with that feeling.

Another contractor came in to look at the bathroom work. He brought his plumber with him and they spent a good deal of time looking at the options that would give me the bathroom I want. They listened and shared their own ideas, then talked alone for a bit. The contractor emailed references to me and I will be calling them this afternoon. He says he will give me a price on Friday. It's another delay. So I have to deal with that feeling.

Jim finished the day with the framing for the bathroom door. He was unable to hang the door in the wall; he ran out of time. He did, however, have it to the place where a couple of buddies of mine could come over and hang the door for me. So Mike, Tonny and Dion all showed up and we tried to hang the door. Unfortunately the pre-hung frame had a warp in the top and no matter how we tried the door would not hang straight. So instead we had a pizza, ate some chicken wings, and drank a couple of beers.

Spending time with the guys, yakking about nothing in general, the four of us trying to hang a warped door; it all made for a pretty good evening. I was left with the feeling that I had a life and I could enjoy it even with the frustrations therein. That's the kind of feeling I like to deal with.

I Need A Vacation

I had another bad night last night; I'm finding I have more bad nights than good ones, more nights where I wish it was just all over, that this stupid disease would simply be done with me. It was one of those nights where the frustration of how I am forced to live, the distress of a failing body, bends around me like steel bars, holding me prisoner in what remains of my life.

My problems with last night started during the day, dealing with the renovations, what can be done and what cannot be done, what Jim will do for me and what he won't do. Jim works for free and any complaining would seem ungrateful. Yet his work style and work speed are difficult for me. He is a night person, staying out until well past midnight and not getting out of bed until 11:00 AM in the morning. He is difficult to get along with for the first hour; he needs to sit and have his coffee while he slowly gets his body up to speed.

I, on the other hand, even in my tired state, am usually awake by 9:00 AM although there are plenty of days when 10:00 AM still sees me resting in bed. Getting up earlier than Jim gives me time to sort my thoughts, write my blog and have a coffee. So by the time he is up, I am usually well into my day, or at least a bit into my day.

Jim's work speed is good; when he does something he doesn't waste a lot of time. His work day, on the other hand, is short. Usually Jim starts at around noon and calls it quits at 4:00 PM. He has been very clear that I am not to bug him or get in his way; I can't help anyways. Apparently everyone in the world thinks I am a micro-manager except me. As he is quick to point out, he can always go home and I will have to hire someone to finish the work.

I, on the other hand, tend to want to work much longer than that, seeing the things undone and frustrated by my inability to do them. So by the time he is done with his day, I am exhausted and frustrated through no fault of his, but rather through my own limitations. I know it would go so much faster with another pair of hands, but any offer I can give is simply in his way by virtue of this damnable wheelchair. I am at the mercy of others, unable to care for myself.

On top of all of this frustration, I am working with other contractors to try to get a bathroom I want. It's expensive, more expensive than you can imagine for a simple bathroom. The reason for the expense is simple; because I live in a multi-unit building, not a detached home, everything has to be done by certified professionals and with permits, and the resultant inspections, from the city. Trust me, the city is fussy on this stuff, so it takes longer to even get things moving, let alone get things done. One estimate came in yesterday with a minimum of six weeks work time and almost $15,000. He recommended I get a second mortgage to pay for the work.

After all of this, a process as exhausting as you can imagine for me, I went out to trivia. It was one of those nights were the game was slow, the room was crowded and I was just worn out. I had to go to the bathroom halfway through, necessitating a lift up the steps and out of the trivia room. Then I had to ask the staff for a container because I forgot my jug and their handicapped toilet is not wheelchair accessible. After that I was just so tired I wanted to give up. So I went home.

I am meeting with another contractor this morning, one who I hope will work on a more timely schedule and with a more reasonable budget. I suspect I am dreaming about this. After all, I live in Calgary. We had a flood last year and most contractors are still going gangbusters on that work. My problem is not their problem; it's how they make money, a lot of it.

Mostly I am just tired of all this. I need a vacation.

My Mind Is Still Working

I miss the warmth of a woman's touch, that kind little whisper in my ear that, regardless of content, says "I love you." I miss the small gestures, when she gets me a coffee or brings me a snack, when she laughs at my bad  jokes or when she finds a small treasure, a gift that becomes mine and mine alone. I miss having that reason to get up in the morning, that reason to share a space, that reason to love, and to live.

There are wonderful life partners out there, women who can take an awful day, a bad day, and with a moment of care turn it into a great day. There are women out there who can lift up a spirit, embolden, encourage, support, encourage; I know they are out there, I've met them. Unfortunately I don't have one of those wonderful creatures in my life of late; I am still, sadly, single.

We all want the perfect partner in our lives, even those of us with ALS. I talk to a great many PALS, both single and in relationships, straight and gay. There are a few lessons I have learned from these conversations. First, and absolutely foremost, PALS in loving relationships live longer. It's just true that those of us who feel loved and cared for do better with this disease. It's not surprising that troubled relationships crash on the racecourse of ALS, obliterating everything that carried the relationship beforehand. This disease is deadly to every part of life and any part that is weak simply crumbles before those three letters. It's the "loving relationship" that counts.

Second, single PALS still want the right person in their life, the perfect person, in the same way everyone else does. Just because we have ALS doesn't mean our dreams and hopes should change. Just because our future is uncertain and our bodies are broken doesn't mean we should take a lesser stance on our worthiness. On the other hand nobody is more aware than I am that my body is far from perfect, that I am damaged by this disease. Someone said to me recently, "Perhaps you should lower your standards." Well, perhaps. But then I would probably be in one of those troubled relationships, and ALS will destroy that. So why set myself up for failure? No, I think I will hold out for the right relationship, short or long. In the meantime though, I wouldn't mind a big of a fling.

You see, that's the other thing I hear consistently from PALS; no matter what condition your body is in, your mind is still active and sex is still important. It's frustrating for both PALS and their lovers to have this body fail. It's even more frustrating when those who were once your source of passion become your source of care. More than once I have heard how caregiving takes over everything and physical passion flees as the need for care takes over. I had one woman say to me "He is afraid to make love to me; I think he is afraid he might break me." Yet the need, the want, the passion, is all still there. You don't even want to know what some of the men have to say about what they want, but want they do.

Imagine the frustration of being trapped alone inside a body. Sex begins in the brain and nobody else can get in there with you. As a woman I met online once said to me in one of the many frank discussions we have had about this, a woman whose onset was in her hands and arms, "Imagine having a working libido, having the urge, being horny, being alone, and having hands that don't work. There is nothing more frustrating."

You see, even with ALS we are real people, people who want and seek a life and love, both physical and emotional. If there is anything I could say to my future lover, it would be "Don't forget that somewhere in there my mind, in all its glory, is still working".

I Think I Might Be Depressed

It's cold outside today, that grey of cold gun metal, harsh cold that seems to steal life in its passing, crushing the hopes of those seeking the warmth of spring. There is a thin, brisk wind blowing by, shaking the branches of my tree, just enough to make it appear shivering yet not enough to dislodged the chunks of icy snow gripping the needles and branches. It is the kind of day where wakening seems a bad idea.

Waken I did, to what is now becoming an almost daily ritual, a morning panic attack. These are momentary anxiety events, falling on me as I wake and consider my situation, as I think about the things I did and said the day before, seeing myself harshly and judging myself unfairly for who and what I am. It is within these small moments in the morning where my thoughts flood with the utter failure of my life, its pointlessness, its emptiness. Fear and doubt are my daily waking companions for those moments; it is an act of will that I dismiss them as the ragings of an unmanaged and ill-prepared mind, fighting past them to start my day.

Self-condemnation is deep within me, taught to me early and used by others to manage me. I can still remember my Dad saying to me, as I was chattering away, perhaps around 12 years old, "learn to think before you talk", implying somehow that my words and ideas were thoughtless. I remember the scorn of his judgement, how he would call me "stupid" and his readiness to dismiss me. And I get angry at myself when I realize I have done this to my own son.

Words have always had power over me. I spent a great many years with my ex-wife taking my words and inverting or perverting them for use as weapons in future arguments. I must not be much of a man if I am so easily driven to paroxisms of self-flagellation over mere words, so self-judgemental that even the lightest of judgements from others could drive me to the darkest of self-loathing.

For all my outward strength, I forever fight this inward battle. I am getting tired of it, tired of this eternal internal winter, the feeling that no matter how I feel outside I will never feel warmth inside, that I can never truly love myself, that I am unworthy of love. I am tired of it, the sense that there is something so horribly, innately wrong with me that I have been afflicted with this disease as some sort of punishment simply because of who I am. I am tired of waking each day only to have to convince myself that I am worthy, that I have value, that I can be loved.

It's A Great Party

It's Super Bowl Sunday today and a group of my friends have decided that my place is the best place for a Super Bowl party. Of course what they really decided is that none of their places would be accessible to me, and mine is the most accessible to all. What's really good about that is the realization that location determines attendance for me, something they have all had to think about of late. We've tried other places and will continue to go to other places, but my place works so darn well for me that it is now the default.

It's going to be a busy day. I've been in the kitchen since 10:00 AM already and there's already been people by with supplies. Soon more will arrive and the food preparation will begin in earnest, as will the cleaning and organizing. They all pitch in and we all have a good time. There will be far too much food, plenty of beer, wines of many types and it is highly likely there will be multiple Chocolate Martinis prepared. All in all it should be a good party.

It's important for me to live, to have a life while I can. Yesterday I was at the ALS Support Group. The topic of discussion was "Advance Care Planning" and "Goals of Care". Those titles are simply euphemisms for "How Hard Should The Doctors Try To Keep Me Alive?" We talked about things like the level of medical intervention as I approach my end of life. The topic of relevance and age came up. It's the kind of thing we all need to think about, that level of intervention which is appropriate should our bodies fail us and should medical or mechanical devices be used to keep us alive. We talked about quality of life and reasons to live. In the end all of this is a very personal decision.

Then this morning I heard about the death of the actor/director Phillip Seymour Hoffman. He was only 46 years old. They say he died of a drug overdose. It seems so much of the creative community struggles with drug addition. I wonder if he had an "end of life" plan in place? In his case there wasn't much need; he simply died, and probably fairly quickly. He most likely has a will in place, but maybe not. Regardless, there is no decision needed around medical intervention.

I think more of us need to think about what we want to have happen when we are near death. I know for me the answer is simple. At this point I have decided to let nature take its course; I have a "DNR" and have already handed this over to my brother, Peter. I simply want to die when it is time. I am not afraid of this. In fact my greater fear is that modern drugs and machines will keep my disabled body going, while I live inside that shell, trapped and alone. My decision is made; make sure I am comfortable, make sure I am not in pain, and let me die with whatever dignity I have left.

Of course I may change my mind on this, particularly as the last days approach. After all, it's a great party and nobody wants to be the first to leave.

I Made My Bed

Last night was better than the night before. Yesterday I awoke on a bed with no sheets, having stripped them in the middle of the night. I got up thinking about how I was going to make my bed, a non-trivial task when you consider that my wheelchair only gets to one side. I decided I would do it later. So, after sleeping in enough to deal with that night, I got up and went about my day.

My place is a bit of a mess right now with missing doors, exposed walls, holes in the ceiling and dust all over. There was a bunch of junk to go to the dump. My friends Mike and Dion came over and they helped me load the truck and take the renovation waste off to the dump. When I say "helped me", I really mean they loaded the truck and then unloaded it at the dump. My contribution was to drive the truck and buy the Timmies.

I did not ask the guys to help me make my bed; that's just not a guy thing to ask for. I know that sounds odd, but then again I am a bit odd in many ways. I would be more than ready to ask a woman to help me make my bed, or my son even, but not one of my male friends. It's just the way I am. So instead we sat and had coffee and talked about life.

After Mike and Dion left, I watched a pathetic Canucks team lose yet another hockey game to a team they should have easily beaten. Still the bed went unmade. Clearly I was hoping for a magical bed fairy to come and do it for me, or at least one of the women in our group. But no, it was me and me alone at the end of the day. I called it a night and before I could climb into it, I was compelled by simple circumstance to set about making the bed.

Making the bed from a wheelchair and without functioning legs is an interesting challenge. First I had to strip the quilts; no big deal except they are big and get in the way. So I pushed them off to the side as best I could. Then I climbed on the bed and yarded myself along with a fitted sheet over to the far, upper corner of the mattress. Once there I lifted the corner as best I could and tucked in. After the first corner, I slid to the other top corner and, as best I could, repeated the tucking in. Then, once more unto the breach, I slid to the lower far corner and managed to tuck that in, all the while still sitting on the bed. Finally, I got back into my wheelchair and tucked the last corner. Once that was done, I rolled to the other bottom corner to pull out wrinkles as best I could; not hospital or military quality, but good enough for me.

Next came the top sheet. Being wise in the ways of sheet folds, I placed it so that I could unfold it roughly into the shape desired, starting at the upper near corner. I made sure to leave the fold-back part at the top so I could fold it over the quilt edge when done. Then I unfolded as best I could. This time the process was almost reversed, starting at the near top then moving to the near bottom and finally to the far bottom, all while seated in my chair. The only part I had to climb abed to do was the far upper corner. I transferred my massive bulk onto the bed and did what I had to do to get that last corner in place.

Next came the quilts, first the big one and then the small one, my sailing themed quilt from my Mom's quilting group. I must confess to a certain degree of disregard for propriety in this effort. I simply flung them as best and square as I could, knowing full well that I would destroy any sense of square and neat the minute I got under them. It was kind of a throw-and-go effort, with me doing some neatness from the foot of the bed as best I could. In the end, it wasn't a bad effort. My bed was made about as neatly as that of your average 20 year old. So I climbed in and made it all messy again.

I slept well, except for the tummy ache at 3:00 AM. That was probably the second helping of Chicken Korma reminding me that I really don't need to eat everything I cook.