Dreaming

There is a song by Simon and Garfunkel that starts with the line "Last night I had the strangest dream". The song goes on to present a dream of a world where "all agreed to put an end to war". It's an impossible dream, as most dreams are.

Last night I had the strangest dream. In the dream I was back at my old home with my ex-wife. My granddaughter had taken a red felt pen and drawn lines all over the coffee table and my laptop computer. I chastised her, then my ex-wife chastised me for chastising the baby, then we got into a fight. It sounds all too familiar except this time she ran away crying. She never did that in real life.

Scene two of the dream was equally odd. We were riding on a motor scooter going to see my brother, the one who lives in Louisiana. Oddly enough somehow Louisiana became Lansdowne Park and instead of being in Richmond where it belonged it was in the farthest upward reaches of North Vancouver. We crossed a giant bridge over a giant valley on a long, empty highway upwards.

We drove up this roadway to a golf course at which point we got off the motor scooter and began to look at the Map application on my cell phone. We were lost. People gathered around to help look and then suddenly they were all gone. At that point we went to get on the scooter to go to my brother's place when I decided I was tired and wanted to go home, only it was an hour and a half away. That part of the geographical displacement of the dream still worked, sort of!

It was a vivid dream, an unusual dream. It went on a bit more but with nothing that seemed odd. Then again, nothing in a dream seems odd when you are dreaming it. People often try to interpret their dreams, to gain insightful meaning from them. I try not to do that. I try to enjoy the story rather than search for the meaning. After all, it's just a dream.

But in my dream, I could still walk. In my dream, me legs worked. In my dream, I did not have ALS.

Life Lessons

I've learned a few things in life, some useful and some not so, some practical, some not so. I will not leave behind much of a legacy. It will take all my financial resources to survive the coming years, the remainder of my lifetime. So perhaps the only true legacy I leave is the thoughts and ideas that tumble out in this writing. There are, perhaps, too many for one blog entry, so here are a few. I leave these mostly to my children. If they have not learned these life lessons yet, I hope they do, and I hope they can put them into action in their own lives.

Life isn't fair, but it's still good. My particular situation is perhaps the best example of this. ALS is a terribly unfair disease; I am angry about the unfairness. There is no hope of a cure and it marches relentlessly to life's inevitable conclusion. That doesn't mean my life is bad. In fact, other than this small medical issue, my life is pretty good. I have a great community of friends, terrific family, an interesting and compelling career, and and active lifestyle. I don't have much money yet I seem to have all I need. All in all, my life is pretty good. I just have to remember that when I am angry, depressed or tired.

When in doubt, just take the next small step. This is a truism for me both physically and psychologically. It seems impossible for me to stop; I just keep on keeping on. When things are so big that I cannot go on, I break them down into smaller bits and then I do the first bit first. After that, I do the next. Eventually I end up somewhere; sometimes it isn't where I thought I was going, other times it is exactly where I want to end up. It all starts with the next little thing to be done. So I figure out what it is, and I do it.

Life is too short to wait for tomorrow; enjoy it today. I have really learned about this lately. The stark reality of my situation strikes home on a daily basis. Yet I always seem to find time to have some fun. I love a good party, a room full of friends, good food and great humour. This is how I enjoy life; I thrive in a crowd. Not everyone does; each of us needs to do the things that bring us joy. This is what it means to enjoy life. My greatest pain arises when I lose that humour, that ability to see the joy in things. My life is not the only one that is too short. I'm just focused on mine right now.

Don't compare your life to others. I really struggle with this some days, especially lately. I need to remember that none of us can truly comprehend the life of another person. Each of us experiences life differently. We have differing joys, differing pain, differing priorities, differing perceptions. My life is made no easier by comparing with someone's harder life, nor is it made harder when compared with an easier life. It is what it is, no more, no less. Any comparison is ultimately pointless. So why bother?

Get rid of anything that isn't useful. Clutter weighs you down emotionally and physically. I believe that less is better, in almost everything except love. But then again, love is not clutter. Stuff, junk, things that distract you from the important things in your life; this is clutter. Things will not make your life better. Mostly they just get in the way. Travel light. Live a life unburdened by the unnecessary.

People and emotions clutter your life just as much as things. Some people just make life more confusing. Their own issues, their emotional needs, demands, and challenges create an emotional clutter that crowds out the good things in life. You need to clear out the emotional closets of your life just as much as the physical ones. Just as you would get rid of physical clutter that diminishes your life, be sure you get rid of the emotional clutter. Live a simpler, kinder, gentler life. If your emotional life feels crowded, get rid of the clutter.

ALS Is An Expensive Disease

The "average" ALS patient in Canada incurs costs of somewhere between $100,000 and $150,000 over the course of their disease in order to sustain life. I say "incur" because groups like ALS Societies and medical insurance cover many of these costs. I don't have Long Term Disability or Extended Medical Insurance; I am very grateful for the ALS Society of Alberta (http://www.alsab.ca/). Without them my costs already would have been staggering and I am only in the earlier part of this journey. Let me walk you through a few of these costs.

Cane = $40. This is how it all started. I was having trouble walking, so I got myself a cane. Canes are not all that expensive. Everyone can buy one. This is the nasty way this disease works; it starts cheap and small. Then it ups the ante.

Bathtub Bench = $80. You can get an inexpensive tub seat for about $40. It would be useful for occasional use, such as when I come to visit you. My brother Adam did that and I am grateful. For a seat that can take the stress of daily use, you are looking at around $60 and up. If you want a transfer seat so you can get from a wheelchair to the tub, that costs $100 or more. Thankfully the ALS Society of Alberta provided me with a seat with transfer bench. Still, I bought my own seat to use when I am on road trips. It's smaller, but still costs a fair bit.

Walker = $600. That's right, a decent walker can cost upwards of $600. I am a big guy, a tall guy. A small frame lightweight walker wouldn't last a week for me. So I need a heavy framed walker that can take my weight and survive the pounding. Mine was supplied by the ALS Society of Alberta.

Wheelchair = $5,000. This is where it starts to step up. My basic loaner wheelchair only costs around $3,000; it's an entry level model. The one I want will cost $5,000. The ALS Society has this basic chair and has given it to me for the duration; they will get it back when I die. With my own chair, I would like to see it donated to the ALS Society of Alberta so the next person who gets this pernicious disease will have a good chair.

Truck Modifications = $8,800. And I went low budget! Instead of the fully extendable seat I went with the basic platform. Instead of the in-bed wheelchair lifter, I went with a simple back seat wheelchair crane. I got a basic hand powered control set. Just so you know, a wheelchair accessible mini-van costs around $65,000; you can usually get a well-used one for somewhere around $30,000. The high-end lifter seat costs about $9.500 and an in-bed wheelchair crane and canopy lifter system will run you as high as $25,000.

Power Wheelchair = $24,000. Didn't see that one coming, did you? Neither did I. These power wheelchairs are heavy, battery powered monstrosities that cost an incredible amount of money to build and maintain. They are like a car and just about as expensive; they need regular servicing and maintenance. It all costs money, in my case provided by the ALS Society of Alberta.

So far I have spent somewhere in the realm of $15,000 to keep going and I am just starting. The ALS Society of Alberta has provided twice that in hardware. I haven't yet looked at the cost of a hospital bed, slings, lift systems, breathing devices, feeding tubes and special food - all of that awaits me, if I get that far.

I can easily see where that $100,000 to $150,000 goes.

Ask Me. I Dare You!

I live a public life, an open life. I am not a keeper of secrets, a hoarder of "personal" stuff. For me the lines between my public self and my private self are non-distinct, blurry. I have a few areas where I am careful when I blog, but not many. Where I am careful it is out of consideration for others, not myself.

This seems unique. Most people are surprised about how open I am when I write. That openness permeates my life. My life is so simple and uncomplicated that there is nothing to hide. I have nothing that shames me and I see most of my errors as simple, human foibles. There are only a few truly private things, those things we do alone. Yet even those things are not so unique that they must be hidden, undiscussed. Why hide those things that everyone must have in their life? Why secret away those "personal" shames that we all have?

When I was growing up there were constant secrets. Grownups talked about things in hushed tones so we didn't hear. Adults snuck around, avoiding capture, so they could do their secret deeds whatever they were. We were sent from the room as conversations became "not for children". I don't want that. If adults behave in ways that children cannot see or hear, then they need to change their behaviour and conversation.

I want to live my life in a way that the light can shine into all corners. I want to live my life so that my mistakes don't horrify, and when I make them the shame of error is small. If it isn't small, then I want others to know that I am human and I make mistakes, and that some of them are bad. My good judgement and my poor judgement should be visible, open to question. If I cannot answer, then I have something to learn.

Certainly there are things I don't like to talk about. Some of the more graphic details around my health challenges are perhaps more than some of you would like to read. I don't need to go into detail with respect to my biological functions and ablutions each morning; we all know what that looks like. The only difference for me is the difficulty with which I address things like getting onto and off of the toilet, the challenge of cleaning my rear end while seated on a shower seat unable to rise, or other choice elements we can leave undescribed.

Being open is easy for me. I have nothing to hide. There are no secrets in my life. If you want to know, simply ask. In some cases I will tell you before you even ask. Someone with secrets has something to hide. Secrets are about shame and power. I am powerless and I am unashamed. Where I have power or am ashamed, I make no secret of it.

Go ahead, ask me!

Truck Mods

It's snowing outside, fast thin flakes flying by the window blanketing the sky like a fog. My view is obscured, blocked by a blanket of white, obliterating all hope of seeing the sun or the sky or the park in the distance. The tree outside my window has a growing sugar dusted icing, standing still and brave against the weather, solid and stolid, waiting patiently for this last blast of winter to wind itself out.

I would like to suggest that I am trapped by this weather. I am not. I can get in my truck and go anywhere I want. The roads may be bad but they are certainly not impassable. My truck now has hand controls, a seat lift and a wheelchair crane. It's all very high tech, yet very low tech at the same time.

The hand control is a very simple mechanism. You push down for gas and you push forward for brakes. The bars and rods and linkages all hook up to either the gas pedal or the brake pedal. It's a direct mechanical connection, responsive and easy to use. Even Ricky likes to drive with the hand controls. He says they're fun to use. I expect I will be driving for some time yet. This is a good thing.

The seat lift is impressive. It is basically a flat seat on a lifting post. There is a side bar on the seat to keep me safe as I make the transfer. That bar lifts out of the way so I can get on and off the seat easily. The gears and pulleys and cables all live inside the post. The motor is at the base. The seat itself does not go lower than the door frame. At some point this will become problematic as I will be unable to transfer myself up the few inches from the wheelchair to the seat itself. I will have to figure out how to resolve that when that time arrives.

The only real problem is the wheelchair crane. The way it lifts and swings in means it doesn't completely clear the seat base for the back seats. I have to help it a bit. Ricky and I are discussing removal of that seat frame or some other modification to improve the in/out transfer of the wheelchair. I have managed to do something to disable the outward swing pressure already so I have to take it back to the shop to figure out what I did wrong.

The whole shooting match is controlled by push buttons on a control wired into the master control unit that I keep in the front seat with me. So I roll up to the truck, flip down the seat, lift myself on, hook up the chair to the crane and lift in the chair, then use the controls to raise myself to seat level where I can easily transfer into the truck.

Then I grab them hand controls and away I go!

Not Much Of A Future

One of the biggest challenges for me these days is living a normal life. That includes a normal sex life. I am single. If I didn't have ALS I would be out meeting women and starting relationships and having fun. I think you know what I mean when I say "fun". Even being in a wheelchair is a handicap I can overcome; being handicapped is not necessarily a handicap in these matters.

On the other hand, having a terminal illness is definitely a problem. Most, if not all, women are looking for something beyond a short term relationship. Regardless of who they are or what their position in life, what pretty much every one of them wants is a man who can come in, sweep them off their feet, and carry them off on a white horse into the sunset. Okay, maybe not that much, but they are looking for something with some duration, a relationship with some legs.

I don't blame them for that. Isn't that what everyone wants? Most people are hard-wired to want to love and be loved. Most of us would like someone to spend our years with. In my case, it's only months. No matter how interesting, dynamic, brave or exciting I am; no matter what travel and adventures I can do, all that I can offer is what I can offer. It's a pretty poor hand in the poker game of life.

Some have said "there is someone out there for everyone". Bullshit. There isn't, or if there is she is somewhere off in Asia Minor herding goats, willing to accept almost anything to get into a country where she has a hope at a real life.

Let me share an experience with you. I met a woman recently. She is in a wheelchair too. She has MS and faces multiple challenges in her life. She lives in a care home. She is a writer and author. She has a son she depends on for help. She is divorced. She is interested in men and having a relationship. She is near my age. We started talking about care homes and facilities, something I will have to deal with soon. Over a few weeks the conversations expanded to include life, children, personal challenges and even sex.

So I asked her for a date. Her response? She said "I have thought of you that way but one things has prevented me from pursuing this. I don't want to get attached to a man who has been given not much of a future."

It sucks.

Aspirations

Katie strikes again! One of her weekly prompts was to write about my greatest aspirations, to write about what I most wanted to have in life, or to be in life. When I was a young man I most wanted money. I wanted to be rich enough that I would never have to listen to anyone else telling me what to do. Then I got married and had children. As I adjusted into these new roles, I slowly realized the most important thing in my life was to be a good father and a good husband, to be the family man, the provider, the source of all good things for my children and my wife.

Things didn't quite work out the way I expected. I don't want to say a lot about being a good husband; that just won't work out well. As to being a good father? I have learned a bit along the way but I still struggle at it.

There are lessons I wish I had done a better job at with my children. I wish I could have done better at showing them how to be kind, how to be considerate, how to be generous. I'm not saying they aren't those things. In fact I sometimes wonder where on earth they learned it so well. What I am saying is I wish I had done a better job at modeling these traits. The great irony is that now that I am learning so much about these things, I won't have long to be these things. I aspire to show these qualities in my life.

I wish I had done a better job at managing my anger. Anger in me has always been just below the surface. I have always been quick to anger. It has been a major stumbling block in my life, one that I have only recently begun to get a handle on. It has taken me many years to get to the point where anger is not my first response, and when I am really focused, it is not even my second response. I aspire to reach a calmer place in all things.

I wish I could have been more successful in keeping my marriage together, to have been the kind of man that my wife, or any wife, would have said "I am glad he is mine". I know it takes two for a marriage to work and I feel I did the best I could. I wasn't enough, and for that I am sad. I would have liked my kids to have seen what a good marriage looked like, the giving, the willingness to put someone else first, the desire to share a life, the understanding that a marriage has to work for both people or it doesn't work at all. I aspire to be a better husband, and a better man.