A Call From Revenue Canada

I would like to thank Revenue Canada for calling and waking me up today. While I didn't enjoy the nature of our conversation, the nice young man from Summerside, PEI was quite polite and very understanding. He seem rather upset that I would take income from my company and yet not file my corporate taxes. I explained my reality and he listened, finishing the call by saying he "needed to do some more work on the file" and that he would call me back in a couple of days. I suspect they are going to do something to get their money; I just don't care all that much.

It was just after 11:00 AM when he called. I was still dozing, half asleep, not yet ready to face the day. It had been a long night of sleep and still the exhaustion of ALS had not left me. I went to bed yesterday at 4:00 PM thinking I would nap for an hour then go to my weekly Trivia night. I awoke just before 6:00 PM and realized there was no way I could get up and go. It just wasn't in me. So I let Mike know that I wasn't going to be there and went back to sleep.

All told, I've slept about 17 hours. You would think I would be ready to go after all that sleep. Unfortunately that is not the case. My hands are shaking terribly this morning, so much so that I can barely type. I'm like a human vibrator right now. My arms are weak as usual. I don't feel like eating but I will force myself to have some leftover Greek Salad in a bit. This is the new normal for me, slow to rise, slow to engage, slow to action.

The whole Revenue Canada thing is ironic. They say the only two certainties are death and taxes. I am dealing with both of them. Oddly enough, since death is a certainty for me in real terms, I'm not all that worried about it. And since ALS is doing its best to bankrupt me, I'm not all that worried about Revenue Canada. They can get in line. I know they will position themselves first in line, but I'll be dead before the line starts to move.

Money, that's all it is. My Mom used to say that the Golden Rule was "He who has the gold makes the rules." I don't really think so. All the money in the world will not save me from the outcome of ALS. Money is good to have, and bad to have. It's best when spread around and shared, like a nice bit of jam on toast. Perhaps that is what I will have now, for breakfast, at 1:00 PM.

Helping Others

I am up early this morning, at least early for me, in order to take a friend to a doctor's appointment. She slipped on the ice the other day and broke her wrist. The cast makes it almost impossible for her to drive, and certainly dangerous. So I volunteered to be the driver this morning. I have to leave in a few minutes.

This whole situation proves to me once again that I am not really disabled, but rather enabled in some ways and not in others. I can drive, she can't. I can cook, others can't. I have abilities that others do not, and others have abilities that I do not. So perhaps helping my friend is really a way of helping myself.

The whole "getting into the truck" routine is becoming more challenging. I can still transfer myself from my chair to the lift seat, although slopes or snow or almost anything in the way truly stretches my ability. Driving itself is relatively easy. It takes only the coarsest of muscle movements to make the truck point in the right direction, courtesy of power steering. Using the manual controls is still possible although I do shake a bit when holding the brake on for more than a minute or two. In those situations, I just put the truck in "PARK" for a moment or two, then I am fine.

I can still do long distances when I drive. On the way back from my ill-fated trip recently, I drove for several hours non-stop, including going through customs. I am thankful for cruise control when I high the highway, but often enough I forget to use it and find an hour has passed with me holding the acceleration bar in position. It's not all that difficult.

These are the things I can still do. These are the things that are still possible. Yet things requiring exertion, things requiring endurance, they are becoming too much. If I have to lift something heavy, I cannot. If I have to wheel up a steep ramp, I need help. I try to keep myself to the things I can do; I am not always successful, sometimes I need help. Sometimes I ask for a volunteer. That's why it's so nice to have that shoe on someone else's foot for a bit. It's nice to have someone ask me to help.

Warm Days

I didn't want to get out of bed today. That's not entirely unusual, nor is it particularly a negative thing. Given the demand for sleep that ALS puts on my body, I can always sleep just a bit more. Given the amount of work that it takes to get up and dressed, avoiding it is an energy saving idea. Given the absence of any particular demand on my schedule, staying in bed just makes sense. Let's face it, if the rest of the world could avoid getting out of bed on Monday morning, what percentage would do just that?

So here it is late in the afternoon and I am having my "morning" coffee. I need to rush over to Safeway and pick up the ingredients for a Greek Salad to go with the Lamb Chops I am preparing for dinner tonight. Mike and Cheryl are coming over to discuss strategies to let me live in my home once I run out of money. There are a few good ideas on the table and I know I can trust them to help me make a good decision.

The reality is, of course, that there is no good outcome from this. So for me, in the moment, for today, I am going to focus on the good things I have in my life. I have wonderful people around me. I can still eat, still shop, still cook, still look after myself, mostly. The emotional setbacks of the last few days will pass and I will move forward. It is in my nature to forgive and move past stuff. It's just a part of who I am, whether I like it or not.

It is a beautiful day outside. The Chinook winds have brought warm weather, the snow is melting, the sky is a beautiful powder blue drifting into soft white on the distant horizon. The air is now calm; the branches on my tree, clear of snow, are still. Not even the junkos and magpies are out right now. I suspect that they too are basking in the warmth of what should be a winter day.

It will cool off tonight; it's begun already. The temperature is off a couple of degrees from its midday high. The middle of the night will bring back the cold, just enough of it to freeze the melt of the day into black ice on the local roads. It is the way of life here in Calgary; the gift of warmth in the day brings the danger of ice in the night. Life is kind of like that too; you have to enjoy the gifts of the day for the shadows of night bring sorrow. I like the warm days a lot better.

Support

I almost forgot to write today; it's been a bit of a ramble recovering from yesterday. Fortunately a couple of my friends have dropped by today to make sure I was okay. Once again I find myself surrounded by support here at home in Calgary.

The question I am facing now is what to do. I had my schedule arranged. I had my plans made. I had things setup for me to be out of town for a couple of weeks. Now I find myself in town, not quite knowing what to do with myself. Of course I can step back into my regular routine but I am a bit embarrassed. I was so excited about heading south. I told everyone, with some glee on my part, that I was going away. Now I will show up, never having been farther than Butte, Montana, facing a bunch of questions about what happened.

Right now I am having a fairly serious crisis of confidence in my biological family, my siblings and even my Mom. I'm still stunned by what happened on the road, and the effective non-response from the other brothers. All it does is confirm that the people I count on are the people I should count on, those who are around me on an ongoing basis.

What I do find interesting is the level of unconditional support I am getting from those around me. There has not been a moment of judgement or suggestion that I am making too much out of this. While those things might be true, and I might be making too much out of this, I am still struck by the loyalty and care of my friends.

My children have also reached out to me in this, phoning me and touching base. It was so good to hear from them in this time of distress, so good to hear them say they loved me or to let me know in other ways that they too are distressed about what is happening. I am proud of them. If I have any message for them, it is that they need to care for each other, be kind to each other, be supportive of each other. I want them to be a family, the family that stands up for itself, regardless of time, distance or circumstance. That would make me the most proud of them, to know they are there for each other.

Family

It's been a long day, a tiring day, an educational day. First of all, let me say that my road trip to Palm Springs is definitely not happening. It is a shattered as a wine glass dropped on a ballroom floor. It is a broken dream, never more to be awakened, an incomplete passage from a sonata unfinished. I ain't going south; that's that.

Right now I am sitting, safe and protected, at my own table in my apartment, aided and supported by those who care about me, ensured of comfort and compassion by the people who make a difference in my life on a daily basis. In other words, my family, those who love me and are a part of my life, stepped up and helped me when my travel plans fell to pieces.

It all started this morning, early, far too early for me. It all started when my brother Jim simply insisted that I meed his schedule, meet his demands for time and timing. What he didn't understand is that ALS has a mind of its own, that my body simply cannot understand demands for performance. I just cannot get up and go, instantly, or even close to instantly. My body demands its own schedule, its own timing, its own plan for get up and go. When Jim came face to face with ALS, he said "I don't want to do this. Can we go home now?" I said "Yes".

I am continually surprised by those who call themselves my family, but their inability to see on a daily basis what this disease does to me. Those who are with me on a regular basis, those who see me from day to day, from week to week, have seen the loss of ability, the struggle with normalcy. Those who share my life on a regular basis see the exhaustion, the slide into incapability, the diminishment. They understand, they care, they know what it is to see me fall from the heights of what I was into the depths of what I am.

My family is those who care for me, those who attend to me, those who support me both emotionally and financially. My family are those people who are there when I need them, answering the call, forgiving the emotions and frustrations and anger and tears. My family is those who are around me in this time of my life when I most need them. My family are those who love me, forgive me, support me. I have a family, not those connected by genetics, but those connected by care. For this, I am grateful.

In Butte

It's 9:45 PM. I am sitting in a small hotel room, at the Motel 6 alongside I-15 in Butte, Montana. It's a pretty decent wheelchair room except that, as in many wheelchair rooms, it only has one bed. Fortunately I am alone in the room; having only one bed doesn't matter all that much in this setting.

As to Butte, Montana, where I lay my head tonight, it's a mining town high in the mountains of Montana nestled deep into the Silver Bow Creek Valley, a natural bowl sitting atop the Rockies straddling the Continental Divide. It has a long and storied history as a mining town, starting as a camp, becoming a boom-town and settling in for the long haul thanks to rich deposits of gold, silver and copper. You can still see the mine-heads where urban areas and homes have been planted up close. At night they light up the head-works in red, the locals proud to acknowledge their history and economic basis.

My day started in Calgary, rousted out of bed early, for me that is, in order to be picked up by my brother, Jim. We are on our way to Palm Springs, California; it's a winter to summer road trip, out of the freezing, snowy weather of the great white north to the sunny, dry climate of desert southern California. Our plan is to make the drive in three days. To do this it will mean early starts and a long drive for three days, today being one of them.

Early is a relative thing. Jim has always been the night owl, usually staying out or at least up until 2:00 or 3:00 in the morning. In his normal routine he will sleep until about 11:00 AM, then groggily arise and slowly start his day. On the road he shifts his schedule, sometimes getting up as early as 9:00 AM and even 8:00 AM if needs be. He's not afraid of a long drive; nor am I. So this morning he left Edmonton at 9:00 AM to pick me up at noon. I was ready at noon but without having written, so here I am late at night, or relatively late, making my observations.

Jim finds himself in an odd position on this trip. He is the early bird, waking before I do and ready to go long before me. As we were getting into Butte, he asked what time I wanted to head out. I said 11:00 would be fine; I don't think he felt all that good about starting that late. So I am going to bed early tonight, early enough to get plenty of sleep and be up sometime around 10:00 AM. That means it's bedtime for me in a few minutes, an early rare bedtime for me.

Trust Issues

I have trust issues. There is no doubt about it. One of my friends described it as a wall I built up around myself, letting nobody in lest they hurt me in some way. I was raised by a man with trust issues and then married a woman with trust issues. All through my life my own trust issues have been supported and reinforced in my deepest personal relationships.

My Dad warned me warned me persistently, in word and deed, that people could not be trusted. When someone gave you something, it was because they expected something in return. When you gave someone something, you had to remember it so that you could call back the favour when you needed it. You see, with my Dad, there was no such thing as a gift; it was always a transaction with an expected return.

Then I married Carla, a woman who barely trusted me and eventually didn't trust me at all. Her trust issues were not related to fidelity; while we were together I did not fool around. There were no other women in my life expect my wife. Carla's trust issues with me were related to money and reliability. From her I learned I was bad with money and was not a reliable provider.

In both of these relationships, the trust lessons I learned were not only incorrect, they were down right perverse. As it turns out, I am very reliable and have provided for my family very well. As it turns out, I am very good with money and have managed to look after myself very well. As it turns out, I am very generous without expectation of return. I have successfully unlearned those false lessons. However the deeper trust issues, the ones where I have learned to fear, are not being resolved quite as quickly.

I still have that wall. I am still suspicious of gifts; my Dad taught me they all came with strings. I still doubt myself in my recent financial decisions; my ex-wife would be telling me I've wasted a lot of money on frivolous things like travel and wine and my truck. I still doubt myself around reliability; I am letting my children down once again by dying too soon and leaving them with nothing. Those voices are still inside my head.

So when something happens that seems good, I am doubtful of it. When someone comes into my life and is good to me, I wonder what they want. When people say they will help me, I don't believe them. I am just not going to have enough time to unlearn these lessons, to get these voices out of my head. At least I recognize them. That's a first step.