Saturday, 28 February 2015

My Truck

I spent most of my day today helping a friend move. Of course I don't do much of the work; my primary contribution is as the owner of a truck. In this particular situation I could not take stuff out or bring stuff in. I just waited for the other helpers to load my truck. Then I drove to the drop off destination and waited for them to unpack.

My contributions to our group activities have begun to lessen as time has gone by. I've become less and less capable with respect to almost any major physical exertion. I can't pick up heavy boxes, or even fairly light ones, thanks to the combination of increasing general weakness and having to lift from a sitting position. These days I offer my expertise in directing others, something I have always been more than a little willing to do, and my expertise in driving my truck.

There are other areas where I am still a full contributor, or as full as I can be. I'm still part of the trivia discussion, still part of our group chatter, still part of the lives of those who are around me. It's just the physical part that is becoming increasingly difficult to do. I count myself fortunate that they don't discount me or leave me out because of this. I am still a part of a dynamic, interesting group of people.

Tomorrow I am headed to another friend's for dinner. She and her husband bought my old stove, using my truck to haul it away. It is another way I can help, simply by allowing others to share in the assets I have available. In one of the oddities that is life, I will have a dinner prepared on my old stove. I just like the way some of these things come round again. And I love having my truck.

Friday, 27 February 2015

The Last Thursday Night Out For A While

Tuesdays and Thursdays are my nights out. They are the cornerstones of my week, the regularity in my social life that makes a lot of things worth doing. On Tuesdays I go to Trivia with a group of friends who have known me for years. On Thursdays I go to Name That Tune with a group of younger friends, most of whom have absolutely no idea that I could once walk, climb, run, or even stand up.

These nights are important. I am a social creature; without this regular social interaction my life would become a pale imitation of itself. I need to be out there, to be out with people. As Katherine said to me the other day, if I don't go, I will die. Perhaps it is not that dramatic, but these nights are a part of my life blood, a part of me that I just cannot let go.

Except now I must. Last night was a watershed night. It was the last of my social nights before I become trapped by the removal of the elevator from my apartment building. Last night was my last night of freedom before I am forced into the prison of my own home, house arrest based on lack of an elevator. I can live here quite handily without going out. Grocery stores will deliver, so will the Safeway Pharmacy. Friend will come to visit, making sure I am not in solitary confinement at home. Katherine will be here. Yet, even with all of this, the inability to go out when I want to will no doubt be highly destructive to my spirit.

Of course my solution is the road trip. Still, this is not a trip I take willingly. This is not a trip I planned on. It is a grudge purchase, something I have to do. While I will make it a great trip, finding something good in the situation, turning difficulty into success, it is still a trip I am compelled to do. It is either the road trip or something else. In all cases, the worst case scenario would be to stay at home, trapped in my apartment for two months, a prisoner to the situation.

I will get value for the money I spend on this trip, no doubt. With the help from others, through direct support as well as through my GoFundMe campaign, this trip will be more than just possible. It will be enjoyable. I will have another adventure. I am just struggling a small bit with the loss of my Tuesday and Thursday life.

Thursday, 26 February 2015

Road Trip Plan

I am starting to get excited about my road trip. My GoFundMe campaign has raised almost $3,000 from 30 donors, which covers about a third of my costs. I am going to run my credit card up even further so that I can cover whatever I cannot raise. It is an amazing experience for me, to get this kind of help from so many people.

I am confident enough in making this trip that I have already put together a travel plan. I have "the spreadsheet" that I have built up over the years and that now seems to have a reputation all its own. This spreadsheet started as a sail planning tool where I could set up destination ports, run times, layovers for tide and current changes, all kinds of things which might impact a sailing trip. It was no great matter to change it to a road trip planning tool.

The spreadsheet includes times for departure, drive times, allowance for stops, arrival times, and such. It even includes a budget section for food, hotel, and miscellany. This is how I get to have a budget plan so quickly. I even break it down to average cost per day!

The reality is, however, that once I get in the truck and head down the road, whimsy takes over. The plan doesn't exactly go out the window; it just gets relegated to what it really is; a plan. I have always said that a plan is a guide, not a prison. You make a plan to tell you how to get to where you want to go. Once you are underway, other things come into play, things like snow on the roads, an interesting side trip, traffic, you name it. The plan is the start of things, but never the finish.

That's what will happen starting March 8th. I will get in the truck and start out on the road, with a plan. I will drive to where the plan says I should drive, or perhaps not. I will try to stay on the budget for food and hotel, or perhaps not. What I will really do is enjoy what I can enjoy for as long as I can enjoy it. That seems to be the best plan.

Wednesday, 25 February 2015

A Little Nuisance

It's the small changes in my life that impact me more than the big ones. The big ones can have a dramatic, immediate, or near immediate impact. But the small ones drag on and on, seemingly endless in their instances, each different, each new, none so big as to be impossible yet all significant enough to make my life a challenge.

Fingernails, for example. I try to cut my fingernails fairly often. I keep them short. In the cold Alberta winter, they tend to become brittle, cracking and splitting if I let them get too long. I've been meaning to clip my nails for a few days now, noting that at least three of my fingernails have split in the last couple of days, leaving jagged edges to snag on socks and sheets. Then, this morning, when I was getting out of my shower, my hand slipped and I scratched my legs with those broken nails.

The scratches, especially one of them, were deep, cutting into me and drawing blood. Of course since I take anti-clotting medication, it took about an hour for the bleeding to stop completely. There was blood on my hands, on my legs, on the cloth I used to stem the flow. All I could do was sit, cold and naked from the waist down, waiting for the bleeding to stop before I could finally get dressed.

That's what I mean by one of the endless minor things. You don't think of broken nails as a big problem; at least I don't. They are a fact of life. On the other hand, a broken nail can scratch pretty good, and I can bleed for a fair while. So what is small becomes impactful, if not large. And shortly after this one ends, there will be another. It's just the way it is.

I have to have an approach to these kinds of inconveniences, reminding myself that this is just the new normal for me, that I have to think of the obscura as well as the ordinary, that what might be small might also be a real nuisance, like a mosquito in your bedroom in the summer. It's all a part of living, whether you have ALS or not. It's just a bit more complicated for me.

Tuesday, 24 February 2015

Friends and Lovers

I'm quickly getting used to the constancy of having Katherine in my life. She is happily sitting next to me, enjoying some more of the Greek Salad we prepared together for our dinner last night. We just got my laundry going. Next we will spend a couple of hours just enjoying each other's company, waiting for the wash and dry cycles to complete. She will spend her evening at home, in her own home, while I will head out to my regular Tuesday Trivia night.

She is well used to my needs with respect to ALS, well experienced with the failings of my body, the damage to my spirit. More than once I have been reminded in her kindness that I have not lost all of that which makes me a man. She is tender with those parts of me which are damaged, yet demands that I do what I can for myself even when I don't want to do it. She puts lotion on my ruptured feet and powder on my rashed skin, all the while demanding that I do my laundry and help with the dishes.

Last night was a great example of how all of this can, and does, work for both of us. We hosted some friends for dinner. We  prepared dinner together, we prepared dessert together, each of us doing what we could and ensuring the other could help. I sliced vegetables for the Greek Salad while she peeled, cored and sliced apples for our Apple Crisp dessert.  She got the dishes out of the cupboard while I set the table. She readied the stove while I prepared the lamb for roasting. In other words, we worked together, her knowing what I could do yet ensuring I did what I should.

There is a reason people in stable, committed relationships do better than those who are not, whether it be in life or with ALS. It's simple. If you care, you can be cared for. If you work together, you can be helpful and helped. If life is good, it's worth hanging around a while longer. I am lucky, both to have Katherine, and to have so many other people in my life, people like Cheryl, Dion, Mike, Brad, Tonny, David, Anisa, Dan and so many others, along with my lifelong friends like two Chris'. If you have to have a shitty disease, this is the way to do it.

Monday, 23 February 2015

Paying For Life

My friend Mike once said to me that he thought my meltdown days were closely linked to an event that drove home the reality of ALS. He is right again. Having recovered from a terribly emotional Saturday and Sunday, I look back and realize that my new stove came on Friday, the one with front knobs so I don't burn myself while cooking, and my new commode chair came on Friday as well.

The commode chair is the most hated of the many arrivals due to ALS. Most of the others offered some increase in both my quality of life and in my personal dignity, even if I didn't see it at the time. The dreaded commode chair is just the opposite. It is intended for me to shower in, when I can no longer sit in my shower on my own. It is a forward looking emplacement, one that will be needed as time goes by.

It's an ugly sucker, big and hospital looking, not the least shy about its brutal grey paint and the shit bucket that sits beneath the hole in the middle. It's a piece of clinical equipment, completely out of place in a home as warm and friendly as mine. It's just plain nasty, the worst possible reminder of the time to come when I will no longer be able to sit on the toilet, transfer to the shower bench, or even make it from my bedroom to my bathroom unaided. It's undignified; I hate it.

That most likely has a lot to do with how I was feeling this weekend, the anger hidden shallow within me. The confrontation of it, the cruelty of having to deal with another piece of gear focused on my ever increasing inability, on my continual debilitation. I was angry on Saturday, even worse on Saturday night, and totally distraught by Sunday morning. It was another reminder of how much I hate my life with this disease, how much I hate ALS in my life.

Even the new stove reminds me of my limitations, the continual failure of my body. I have to have it; I don't want it. It's not a nice addition to my home, it's a requirement so I can live with ALS, another bloody expense that I didn't want to take on. It's like my coming road trip. I am going because I cannot stay. I want to enjoy it, to find pleasure in a bad circumstance. But it will cost, and I am running out of ability to pay, not just in money, but in emotion too.

Sunday, 22 February 2015

That's Today

There are bad days with ALS, often triggered by something on my part, but bad nonetheless. This is  one of them. I was up late last night, drank too much, upset a friend and spent the last part of the evening in tears. This morning the tears continued, on top of a bad time with shaking, thanks to clonus and spasms. As I lay in bed this morning, I could see the muscles twitching under the now loose skin on my arms.

Something is going on in my throat too. It feels like the roof of my mouth, way in the back, is oversized, making swallowing difficult, whether it be liquids or solids. It doesn't matter all that much; I don't really feel like eating today. With any luck I will be better by tomorrow. Mostly, though, it is the emotional stuff that makes for a really bad day.

I can get used to the physical stuff. I can manage the shaking, the weakness, the exhaustion. The feelings of anxiety, hopelessnes, anger, frustration; they all combine, climbing one on top of the other to make a mountain out of my emotional distress. It is the emotional part of this disease that is the real problem. I work hard to keep it inside, to keep the negatives from dominating my life. The problem is that those negatives are still there, just buried within. At some point I need to get them out, to let them loose, to rid myself of them.

My emotional breakdowns are not pretty. Nor are they common, although they are becoming more common. Take them on to a general sense of loss of control over my life, and the scene can get ugly. What's even worse is that I am not good at releasing, not without some self-medicating liquid courage to help me release the beast within. I hate it all. That's today.

Saturday, 21 February 2015

Go Fund Me

Looking out my window, admiring my tree with its crystal coating of new snow, lumped into mini-glaciers on top of the ever present pine needles, hearing the traffic swish by on the street below, all this and more reminded me of how comfortable I have become here in my home. I see it there, my tree, steady, bristling in the light wind, backed by the endless blue of a clear Alberta sky, the hallmark of my life, resident along with me here at home. Yet I am about to lose my home, and my tree, for at least six weeks or more to the renovations of the building's elevator.

I have, in the main, decided the best way to deal with the elevator issue is to avoid it altogether, although we are going to see if we can try one of the "stairwalker" devices that would enable almost anyone to take me up and down the required six flights of stairs. I say "we" because the device would be on loan from the ALS Society of Alberta. My hesitation, even with this device at hand, revolves more around that this device, along with so many others in my life, requires a separate operator. I would have to have someone with me pretty much all the time. So much for independent living.

Given the choice of staying, essentially a prisoner in my apartment without the aid of an accomplice, or going, with the attendant costs of spending six or more weeks on the road, it looks like not being here is kind of the best option. It's the cost part that gets to me. Over the last year I have increasingly depended on my Visa card to fund the many necessary, and some of the very unnecessary, expenditures in my life. I am near my limit with Visa, both psychologically and financially. There is more room; it's just that approaching that limit worries me for some reason. I know I shouldn't fear maxing it out, yet I do.

The cost of a six week road trip is about $9,500. If I have a companion with me, that will lower the cost to almost $5,000. Staying with family and friends might reduce that a bit, but like fish, guests become problematic if they lay around for more than a couple of days. Then again, the elevator may take longer to replace than originally planned; I may end up away for 8 or even 10 weeks. That's going to take some cash; my credit cards will be limited out by then.

Also, since this will likely be my last major road trip, or even if it isn't, I would like to see places I haven't been before. I want to drive down to the Florida Keys, a bit of a dream destination for me. I want to drive along the Gulf Coast from New Orleans to Pensacola, then down the Florida coast and across the Everglades. Much of it would be new territory for me, a good thing in my mind.

One suggestion was that I do a "Go Fund Me" campaign. I've decided to give it a try. After all, what's the worst thing that might happen? People might not donate? I might have to run my credit card up to its limit? Or even worse, I might end up staying here in my comfortable little home, looking out at my tree.

Friday, 20 February 2015

Should I Talk About Sex?

I want to talk about sex. The challenge is that I am not sure what to say, how to say it, what to talk about, what to leave alone, what to share, what to keep private. The reality is that sex is an important part of my life. I know this may seem creepy for my kids, maybe even for my Mom. I know that this topic is awkward for some of those who are close to me, perhaps even moreso for those who interact with me on a daily basis. Sex is taboo, especially when it comes to those of us with challenges in this arena. Add a terminal illness and you have an impossible recipe for non-disclosure. Nobody wants to hear about sex from a terminally ill 59 year old in a wheelchair.

Yet I know this is an important topic. I know there are lots of people out there struggling with the same things I struggle with. How do you maintain your sexuality when you lose so much of yourself with this disease, or any other disease like this? How do you do what you want to do when your body completely fails in its assigned tasks? How can you be sexual with the same person who helps you bathe, or shower, or get in and out of bed, or dress? How can you feel intimate with the person who, just a few minutes ago, had to clean your penis or vagina because you can't do it on your own?

Human sexuality is such a complex question, becoming even more complex when you intermingle the challenges of illness. I hear from any number of men and women with ALS that their identity as a sexual being goes missing quickly, almost immediately as their lover turns into their caregiver. I hear from women who want sexual contact but can't get it thanks to the ravages of this illness. I hear from men who can still get an erection but can't move their body in the ways that intimacy desires, can't do what is so natural and simple for so many others.

We with ALS are not all elderly, or even approaching elderly. So many are so young, in their 20's and 30's and 40's. So many of us are at an age where sexual contact, sexual intercourse, sexual fulfillment is a critical part of our internal image. We are sexual creatures; ALS steals that from us, making us into creatures needing care instead of creatures needing physical passion. I remember one woman saying to me that what she really wanted was for her husband to have sex with her, but he wouldn't; he was afraid he would break her. Our bodies desire yet cannot deliver.

So what do I say? How graphic do I get? How much of this matters or is even of interest? Nobody really wants to know about my sex life, yet that very discussion might help many who struggle with the damning combination of wheelchairs, diminishing strength, loss of control. Plain and true, I just don't know what to say. But it matters. So someone tell me. I need to know if I should, or if this is the one topic that just shouldn't make it into my blog. Tell me!

Thursday, 19 February 2015

No Elevator For Two Or Three Months

Shit just got real. I know it's a crude expression; nothing more fitting came to mind when I got the notification this morning. I knew it was coming; we've been talking about it for months here in our condominium building. The other two buildings have been through it; now it's our turn.

This morning I got the notification that the elevator in my building would be out of service for rebuild and replacement starting Monday, March 2nd, until further notice, mostly likely for two months, possibly for three. During that time I will have not way of getting up and down from the garage into my apartment, no way of leaving short of calling the fire department or asking someone to lift me down the stairs and back up again.

This means that from March 2 until May 1 or possibly even June 1, I will be home bound, apartment bound, without extraordinary measures to get me in and out. In other words, I will be a prisoner in my own home, trapped by the loss of the mechanical means I need to get out and about. It means no late lights, no Trivia Tuesdays, no Name That Tune Thursdays. It means depending on the kindness of others for the normal, everyday tasks like shopping or picking up medications. It means no spur of the moment drives into the mountains, no quick weekend getaways, no events, no activities, almost no social life.

There are a couple of options that I can see. One is to take off on an extended road trip or something like that, where I am away for a few weeks or more. That way at least half of this duration I will be out of town. It will be expensive and lonely; I will miss my friends and life here at home. Another option might be to see if I can find some temporary accommodations, at least for a month or so. That way I can be here in Calgary; I just need to find a suitable place. Or I could just stay home, toughing it out, doing the best I can, calling the fire department or other helpers when I need to go out, adjusting my schedule and lifestyle to match.

All in all, it's a problem, just another of the many problems in life made all the more difficult by ALS and the wheelchair. It's not the first problem in my life lately, nor will it be the last. It's just a bigger one than most. No matter what I do, no matter how I do it, March through June will be challenging and expensive, at a time when I really do not need the extra stress. I'm not sure what I will do; I'll just do what I have to do.

Wednesday, 18 February 2015

Another Interview, Sadder And Wiser

I did another interview this morning, this time with Global News Calgary. The interviewer remembered me from their interview here in my home last summer during the Ice Bucket Challenge. Her first comment was that I was looking good. Then I explained to her that this was how ALS worked. I might look good, but the disease is still progressing, still taking me away one bit at a time.

This interview was actually a three person setup, the media interviewing myself, Dr. Lawrence Korngut, one of the country's leading ALS researchers, and Karen Caughey, the Communications Director from the ALS Society of Alberta. The subject was the impact of the ice bucket money on ALS treatment and research. My part was to give a patient perspective on what this money and research means to patients.

I did my bit, told my story. When asked about how this research impacted me, of course I said it gives hope in a hopeless situation. I talked about the emptiness and anger that resound after being told you have a terrible illness and there is nothing anyone can do to help you. I talked about the positive possibilities of perhaps having my progression slow down or even, maybe, stop.

At the end of it all, I was exhausted, sadness and depression creeping over me. I've noticed this feeling in the last couple of interviews I've done; the one for Right To Die legislation and this most recent interview. These interviews leave me feeling the challenge of ALS more than those I've done before, those focused on the Ice Bucket Challenge and interviews around funding cuts by Alberta Health.

I think I know why these last couple of interviews have had this effect on me. In my prior interviews, I was talking about living with ALS, how government services helped me live, how the Ice Bucket Challenge would raise money to help me live better and possibly longer. The two most recent interviews, however, focused more on how I was dying from ALS. This was not intentional in today's interview; it's just that the interviewer had some sense of the loss over time and the questions revolved around hope, something I have learned to mistrust with ALS. The interview the other day, the one about Right To Die, was clearly around how I planned to die, not how I planned to live.

These thoughts, these reminders of the ultimate outcome of  ALS, are tough to deal with. They are lead weight on my spirit. What I have learned to do is take them out, look at them, and then put them away again. There is no need to dwell on the inevitability of death. Even with treatments, hope is only faint, the possibility just barely there. What I have to do for the rest of my day is start looking at how good my life is, how much I have lived, and how well I can live, at least until I die.

Tuesday, 17 February 2015

Tempus Fugit

Tempus fugit. It is mid-February. There are appointments in my calendar that run well into March, plans with friends, dinner parties, social events, meetings with medical professionals. Just a few days ago it was Christmas; Valentine's Day has now passed, Easter looms. The long weekend markers of my schedule which used to mean so much for me are now just incidental. The real measure of time for me is which month I am in.

Time has become one of the quintessential focal points for my life. As it passes, I decline. As it passes, I continue to live, with ALS. Each day is another important date, another date where I get to keep going, keep striving for something resembling the new normal that is my life. Each day gives me another opportunity to find something worth living for, no matter how small.

I am now well into my third year post-diagnosis. I've done much better than the neurologists expected, much better than I planned. I face the almost egregious insult of living too long as my assets slowly get eaten away. Here I am, regardless of time's passage, still typing, still driving, still cooking, still laughing, still loving.

Spring will be here in another month. Winter will end, at least on the calender. Here in the Great White North, winter will live on in expression if not in name. Yet the vernal equinox will arrive and day will be longer than night once again. As spring wends on, the snow will disappear and warm days will become the fixture once again, leading us into the peripatetic summer that can still throw cold weather at us.

As I look down the calendar pathway, I see things out there, three and four months away. I see summer events, summer parties, spring road trips. My daughter is expecting a new child in June. My sixtieth birthday is on July 21st. There are things to plan for, places to go. It is this expectation of tomorrow which makes me keep striving to live today. Soon enough ALS will take so much of me that all of this will be impossible. That time is coming; tempus fugit. That's why I need to live for today.

Monday, 16 February 2015

Getting Into My Truck

I've often said that ALS is a sneaky, insidious disease, creepingly slow enough that the tiny, incremental changes it brings are almost unnoticed until something significant happens. It was that way for me, with the ever increasing weakness in my legs, even while I could still walk, finally getting to me, forcing me into a wheelchair two years ago. That incremental loss in my legs continued until most of my leg muscles were completely dead. There are still a couple of working muscles; they two are still subject to the creeping incrementalism of ALS.

There are the big losses, the ones you can see. Then there are the little, daily losses which you can only see if you are really paying attention, and even then only at key increments, at highlighted crossover points where a final, small loss has that big impact. Getting in and out of my truck is kind of like this.

A couple of years ago, when I first had the lift system put in my truck, in noted that the lift itself was a couple of inches higher than my wheelchair seat. No matter, I said to myself, I can still lift myself in, pivoting myself up and over to the seat. That, of course, was only true for that instant. Immediately after that moment, creeping incrementalism took over. My losses were not immediately visible; they happened slowly.

In some ways I thought I had little to worry about. My prognosis was such that I expected to lose the ability to drive in about a year. Now, two years late, I am still driving, long distances at that. What the incrementalism of ALS has done, however, is make in increasingly difficult to transfer from my chair to the lift seat. In the beginning, it was a simple lift and pivot. These days the pivot is gone completely and it's the lift that counts. Getting in and out of the truck can be very difficult where the lift is at an angle or when my wheelchair is not completely lined up.

Now, when getting into the truck, I get as close as I can to the lift seat, lifting myself such that one ass cheek gets to the lift. Then I pull myself further onto the seat using the truck seat and steering wheel as pull points. Since I use the truck daily, I've saw this coming a long way off; it's been one cheek on for a while now, making that precarious pull once that cheek is positioned.

Today I parked in the handicapped spot at a local grocery store. I got out of the truck with no issues. It was when I returned to the truck that I noticed the parking spot was lower in the middle than it was in the front and back. This meant my lift was now about 3 inches instead of the normal 2 inches. One inch might not seem like much, but when it's at my lift point it can mean getting in the truck or not getting in the truck.

It took me a couple of tries to get enough lift so that the edge of my right ass cheek was precariously perched on the outer edge of the lift seat. I threw my hands into position for the pull, having failed at the first attempt. On this second attempt I managed to get enough purchase to drag my sorry ass into the lift seat, exhaustedly getting into place so that I could get up into the truck.

One inch; that's all it took. Were it another half inch I probably would not have made it at all. That is the incrementalism of ALS at work.

Sunday, 15 February 2015

Happy Trails

I am, I suspect, one of the happiest travelers you will ever meet. While there are experiences on the road that get to me, by and large I am happy when on the road. I am happy in a decent, modestly priced hotel, happy in an expensive hotel. I am happy on a plane, on a train, in a bus, in a car. While I was driving home this evening I thought to myself that I would be happier if we had gone for longer, yet when I got home I was happy to be home.

I suspect the truth is that I am just happy, mostly. The few experiences which make me unhappy are when hotels misrepresent handicapped rooms, when expensive food or wine tastes like crap, and when I am compelled to sleep somewhere that feels unclean or uncomfortable. My Dad, when we would travel, constantly wanted to stay in the lowest prices, ugliest joints he could find. Nothing made him happier than a motel at $29 a night; that experience made me unhappy which might explain why I rarely did motel stops with him.

Today was a happy drive. The exhaustion of yesterday past, I arose early this morning, at least for me. I was up at 10:00 AM and, with help from Katherine, dressed by 10:30 AM. Check-out was at 11:00 AM, a challenging situation for me under most circumstances. Today we couldn't even get a late check-out; the hotel was fully booked and they were behind schedule for room preparation. No matter, we managed to get out of the room by 10:35 AM, a minor miracle if you know what it is like to travel with me.

Our stay included the Sunday Brunch Buffet, so we ate plenty and had a couple of cups of coffee, all the while sitting by the giant windows in the restaurant, admiring the trees and the hot pools, watching people come by in their hotel robes on their way to or from a good soaking. Everybody seemed to be in a good mood, with children laughing both in the restaurant and outside on the pathway. The food was simple, good, easy fare; we enjoyed our time.

The drive home was more of a wander than anything else. We meandered up to Kimberley, a small ski town in the Purcell Mountains of southeast BC. Once a thriving mining town, home to the largest lead-zinc mine in the world, it is now primarily a ski resort. It is, in many places, an interesting mish-mash of alpine chic showing its mining roots. From there we headed back to the Crow's Nest Highway, headed east, bypassing Cranbrook altogether.

We stopped for coffee in Fernie, then for pictures of the world's largest truck in Sparwood, then again to take a look at the Frank Slide from the interpretation centre. It was Katherine's first time taking a good look at this, one of Canada's deadliest rock slides ever. Once done, we headed up the Cowboy Trail, also known as Alberta Highway 22, back to Calgary.

It was a good day, a happy day; a happy day to travel and a happy day to be home.

Saturday, 14 February 2015

Beauty And Exhaustion

There are times, moments really, when exhaustion simply flows over me, wiping away everything within me, stealing from me the ability to enjoy all that surrounds me, making the most beautiful of places simply uninteresting. The happened to me just about 15 minutes ago, in the midst of a day of exploration around some of the most beautiful landscape you can image. Now, even the act of typing seems inordinately difficult, my fingers stumbling over the keys, making a rough, correction filled attempt to scribe. Even the heels of my hands are tired, dragging across the base of my tablet.

The saddest part of this exhaustion is how it detracts for my setting. Here I am at Fairmont Hot Springs Lodge, a lovely hotel set amongst the pines and firs, perched beside one of Canada's largest mineral hot springs. The steam from those springs rises outside my window, drifting up into the tree branches, creating an almost mystical scene, something out of a fairy tale. It's warm outside, yet I am too tired to want to explore the hotel grounds, even with Katherine's willing help.

I slept well last night, not rising until noon. The lodge has been kind enough to change our breakfast coupons to lunch coupons once I explained my sleep and rest needs. Our wood paneled room overlooking the hot pools is near the elevator with easy access to the ski lodge type lounge and the full service restaurant. This morning we had lunch in the lounge, taking time to eat, enjoy the food, and soak in the feature wood and brick ambiance around us.

Perhaps it was our exploration in the truck. We drove up to Radium, ostensibly to check out their winter festival. In reality it was a drive to see what we could see, including the herd of Big Horn Sheep wandering their way through the middle of town, completely acclimatized to sharing their range with their human co-habitants. The sheep crossed the highway at the four way stop in the middle of town, waiting for traffic to come to a stop, as a good pedestrian should do. They, and the other locals, share the sidewalks and roads without concern or care that they are so different.

After Radium, we explored the small, alpine looking town of Invermere, its shops lining close to small sidewalks and narrow roads, both jammed with people enjoying a warm winter day here in the East Kootenays. We headed back to the hotel where Katherine needed quick access to our room. I waited a few minutes in the truck, and that's when the exhaustion hit. Instead of another two hours of exploring, we decided an afternoon rest was in order, at least for me.

I have enough energy to write, but not much more. After these few lines I am going to lay myself down and have a nap. I seem to do a fair bit of that these days, even in this most beautiful setting.

Friday, 13 February 2015

Road Trip Day

It's a road trip day, the best possible kind of day there can be. I feel free when I am driving, as if ALS didn't exist at all. Nobody can see that I need a wheelchair; all they see is a bloody big Ford F-150 with a man sitting behind the wheel, a big smile on his face. The road itself offers freedom, with nothing behind me and adventure on the horizon. I must confess that on a great many nights, on my way home from the pub I hit 16th Avenue here in Calgary headed west, the road which is also Canada's Highway 1, and think to myself "Maybe I should just keep heading west. By tomorrow I could be on the coast."

Of course some level of sanity cuts in after the thought and I sadly head home, home to my bed, home to my cozy apartment, home for another night's sleep. Perhaps one day I will keep going. For today I have the joy of heading out on the road in a few minutes, headed for Fairmont Hot Springs, high in the Rocky Mountains. I am not going alone this time; Katherine is coming too.

The road itself is a combination of the familiar and the not so familiar. None of it is new; I have tramped and traveled almost every highway in BC, as well as most roads across Canada. Today we will head out the well known path to Banff and towards Lake Louise. About 45 minutes past Banff, we will head up into the high mountains, winding ever upwards until the mountain peaks appear near at hand, crossing the top in snow burdened alpine meadows.

From the summit we will snake our way down the highway, slither through the narrow pass carved in the rock, then on into Radium. From there we will head down the Columbia/East Kootenay Valley, south to our final destination, an old lodge with beautiful hot springs and terrific skiing. Since I don't ski, this will be a weekend of rest and relaxation, admiring the incredible scenery that makes BC famous.

I've been in discussions with the manager of the Fairmont Hots Springs Lodge. Their only truly accessible room, the one with a wheelchair shower, has no view at all; it looks into a brick wall. So we have decided to take a "regular" room, one with a standard bathroom. The manager took the time and effort to get a wheelchair and make sure it fits in the room itself, and into the bathroom. He also made sure that I could get around and warned me of difficult areas I might encounter.

I don't demand that hotels make special accommodations for me. What I demand is honesty. The manager understands that people will work with him if he works with them. He has tried very hard to make sure Katherine and I have a great weekend. I am going to do the same. I expect it will be a great day today. After all, it's a road trip day.

Thursday, 12 February 2015

My Children

Last night, or rather yesterday afternoon, I had guests over, Katherine's sister and brother-in-law. Ostensibly they were here to see how I make wine. I suspect they were somewhat surprised when I had them in there doing the making for me. I love it when I can co-opt help from those with no experience. The experience itself makes for a lot of fun.

After starting the wine on its first ferment, setting it up so the happy little yeast cells can eat sugar and poop out alcohol, we sat around the table testing previously made wines and eating snacks. In the midst of all of this, my daughter, Kate, arrived. She stepped right in, making terrific conversation, creating laughter, having fun. I was immensely proud of her, thinking to myself what a great skill she had, to walk into a room full of strangers so much older than her, gain their confidence so quickly, and make them feel so much at ease.

I am proud of all my children. You might think, "Of course, you should be proud of your children." I am not proud of them because they are my children, nor do I think they are wonderful because they sprung from my loins. I am proud of my children because of who they are, simply because I see them to be wonderful human beings, the kind of people that I am proud to say are my children. I think my children are the kind of people this world needs to see more of, the kind of people that I would be proud to have in my life, were I to have to opportunity to live longer.

This is not to say I believe my children are perfect; far from it. They suffer from the same foibles of humanity as to the rest of us. They are young, in their 20's and early 30's. They see the world through their lens of inexperience, through the filter of belief in their own "rightness". It is only the young who can live with such certainty in what they think and do. As we age and grow in experience, and ultimately, wisdom, we begin to see far more in things, many more shades of grey where once we saw black and white. I love them for their humanity, that they know they are a part of a larger world, that they can make a difference.

What makes me proud of my children is their compassion; I see it in each of them. What makes me proud of my children is their wit; they all have a fair bit of that. What makes me proud of my children is their ambition; some days it may not be completely evident but I know its there and I see it on a regular basis. What makes me proud of my children is their dedication to family, especially those who now have children of their own.

I once said to a friend that I will leave so little behind when I die. There will be no great works of art, no powerful acts of politics, no impact on history. My friend said back to me, "You have a great legacy; your children, your blog, the people you have touched." My children are my legacy, my great work of history and change. They, each of them, are a wonder to me and I am proud to know them.

Wednesday, 11 February 2015

Broken And Happy

I am a deeply flawed man, broken, damaged like poorly made crystal, filled with imperfections. I know this is true; not only do I not mind admitting this truth, I cherish it. It is these very flaws which define my humanity, which make me a person, different from others who are damaged and flawed in their own way.

There are those of you who will laugh at that first paragraph. The words "no kidding" will spring to mind immediately. There are plenty out there who have had that moment after I say something particularly out of place where you ask yourself, sometimes out loud, "Did you just say what I thought you said? How can you say that?" There are any number of you who have shaken your heads as you read what I write, asking where these words come from. I admit it, I say stuff, sometimes stupid stuff, notwithstanding my recent exhortation for others not to do the same.

I am broken in other ways. My own Mom once described me as the most needy of her children. It's true; I am emotionally needy, very needy. I interrupt people when they talk, a habit I have spent years trying to correct yet seem to have been unable to do so. I eat poorly. I don't drink enough water. I speed when I drive. I drink to much. I make bad decisions. And God forbid you should expect me to keep something about my own life private or secret, although I do seem to be able to protect the sincere confidences of others. Nonetheless, the list and litany goes on and on and on and on. I am damaged goods.

The odd thing in all of this is my lack of shame around it. I think shame itself is one of the greatest shames of humanity. Shame burdens us, forcing to keep secrets within ourselves, forcing us to carry our baggage in loneliness, without the helping hands of those around us who care. I don't believe in secrets. When someone says to me that I shouldn't talk about this or that, it makes me wonder what they are afraid of, what shame is triggered. When someone says "that's not an appropriate topic of conversation", I wonder what internal thoughts and secrets are at play. I also wonder by what authority they get to tell me what is appropriate or not.

I've seen too much damage done by the admonitions of others as to what should be kept in the dark and what should see the light of day, to many lives broken by things kept hidden. As far as I am concerned, there is nothing so terrible that it cannot be shared, no burden so great that you cannot have help with it. There is nothing to be ashamed about, nothing to fear. There is nothing which I have done in my life that is so terrible that I dread it coming out into the light.

This makes me free, completely unafraid. Sure, I may say dumb stuff. On occasion I may hurt people unintentionally, but never with intent. Sure, I may be embarrassed by the words that come out of my mouth. But I am able to love and forgive myself, and others too. I know that the cracks are what lets the light in, that the flaws are what make me human, that beauty lies even in flawed crystal. I know I am broken; I am happy.

Tuesday, 10 February 2015

A Weird, Restless Night

Last night was a bad one, one of the worst in a long time. It started with my inability to sleep, something which happens often enough. While lying there in bed, wishing for sleep to come, I began to think about my decision of purchase a new stove yesterday. I struggle with spending that kind of money on something for which I already have what might seem to be a workable solution.

The problem, of course, is that my current stove is rapidly becoming a health hazard for me, a danger when I cook, something I hope to do for some time to come. Reaching across the stove to twist a knob, especially as my arms weaken, is fraught with the risk of burning myself or scalding myself. I have plenty of self-justification for this new stove, let alone the amount of encouragement and support from those around me on this one.

Yet there I lay, castigating myself for spending on something when I already have something that works. As I pushed myself up into anxiety, I began to beat myself up on all of my financial decisions, winding myself in to a complete panic of self-condemnation, twisting the small into the gigantic as I went along. I told myself I was stupid to get into a position where I owed so much on my Visa, stupid to buy things I didn't really need. My mind demanded to know how I was going to solve this problem, how I was going to fix this. Oddly enough, I did not once condemn myself for my decision to go into debt in order to travel.

I managed to calm myself down after a while, reminding myself that the $20,000 I owe to Visa is a fraction of what others owe, reminding myself of what Winston Churchill once famously said, that "if you owe the bank 10 pounds and cannot pay, you have a problem. If you owe the bank 10 million pounds and cannot pay, the bank has a problem." In my unique situation, the level of my Visa bill is only a problem if I feel compelled to pay it back. These days I am doing just that, but there will come a time when I will not be able to pay. Then it will be someone else's problem, not mine. As my accountant said when we talked about finances last year, "What? Are you worried about your credit rating?" Given the myriad of other issues I face, debt should be my least concern. Not burning myself on the stove seems a bit more important to me.

Once I finally found slumber, my sleep was filled with dreams bordering on nightmares. In one, I was with a child, my child, in some sort of underground subway and boat terminal. Somehow, in one area under construction, my child's hands were cut off and fell in the mud. I took my child and his hands into the washroom, washing his arms and then, separately, his hands, after which I took him for medical care. Afterwards he was playing, both hands working just fine.

Another set of dreams involved housing, a common theme in my sleep life. One dream had me living with my ex-wife and her family in a tiny house, crowded to the hilt with people and junk, all the while sitting next to a gigantic, empty barn. I was, throughout that dream, subjected to insults and humiliations from my in-laws. The next part included a massive apartment in a hotel complex, complete luxury and an amazing view of mountains and sea. The next was a simple bed in a field around which my grandchildren played, that field, however, being right beside the tiny house infested with my in-laws. And these dreams were the first where I needed a cane and wheelchair.

It was a weird night. It was a restless night. It was the kind of night I hope not to repeat any time soon.

Monday, 9 February 2015

Good Things Can Come From Having ALS

It's easy to complain about ALS. Let's face it, nothing could be easier; it's a nasty disease which has stolen my ability to walk, my financial security, my career, you pick it. On top of all of that, this disease seems intent on ending my life long before normal, whatever that might have been. On the other hand, I don't often realize the good things that have happened to my life because of ALS. They are there, those good things, if I want to look for them.

Take for example the friends in my life. While I was certainly close to them before ALS, the advent of this illness has drawn me much closer to them, closer than I likely would have been without ALS. On top of that, this disease has brought people into my life whom I never would have met without the impact of the illness, people like Cheryl and Katherine, and many others.

By the way, I have to correct the spelling of Katherine's name. I have two different spellings, and I was using the wrong one. This means both my daughter and the woman in my life have the same name. This ought to be fun at some point.

Segue aside, there are other positive things which have changed in my life over the last couple of years, not the least of which is the travel I have done. I doubt I would have had the time to travel this much were it not for ALS. The enforced retirement has meant that time is available like never before. The reality is that, were I healthy, I would likely still be working, and working a lot, to cover the costs of an expensive divorce and my fairly generous lifestyle. In fact it is likely that I would be working well into my 60's, not simply for financial reasons but also because I wouldn't know what else to do.

Oddly enough, while I miss my boat desperately, another loss to ALS, this change has made me look at other kinds of travel and vacation. I've driven all over the country and much of the US thanks to no longer being able to spend summers, and winters, on my boat. I've traveled internationally, thanks to being free from the call of the sea. While it's a bit of a stretch, there are positive things to come out of losing my boat.

Finally there is the "what if" factor. How much of my life lately has happened because I have had this big change, this giant opening of both my mind and spirit? What might have happened had I not had ALS, and all the excellent health care I have had? The "what if" game can play out both positively and negatively.

In the end, the biggest single positive outcome from having ALS is what I have learned about myself, my abilities, my capabilities. I've learned that I am a lot stronger than I think. This blog and my TV interviews have demonstrated to me that I can be both well written and well spoken, that those skills I've learned in my career can be brought to bear in the cause of treatment and a cure. To put my voice and mind to some calling higher than myself, that's not such a bad thing.

Sunday, 8 February 2015

Contrasts And Comparisons

I have to remind myself periodically that it's all about perspective. My quality of life depends largely on how I view my life. I live in a society and community that supports me, offers me immense benefits, allows me to live as full a life as possible. For a great many people be they here at home or far away, my life would seem wonderful, even with ALS.

Two events today give a great example of this. My daughter Kate came to visit me this morning, or rather for lunch. Afterwards I picked up Catherine and we went to Home Depot and then to Rona to get a garage door opener to replace the one I accidentally tossed in the garbage the other day while trying to shove a box out the front window of my truck. While we were at Home Depot, I took a moment to look at the kitchen ranges, looking for one with knobs on the front.

I want a stove with knobs on the front. I've wanted one ever since I went into the wheelchair. To reach the knobs on my existing range, I have to reach across the stove, often across hot burners with pots in the way. The are expensive, much more expensive than the basic stove I have today. I am not sure how I am going to pay for it, nor if I can actually afford it at all. It's going to cost somewhere between $1,500 and $2,000. On the other hand, the front knob stove will allow me to cook for longer, to be independent for longer.

After shopping a bit and eventually finding the garage door opener, Catherine and I went to a vigil for the 43 students murdered in Mexico recently. This was no dirge, nor in any way funereal in nature. It was a lively event in a loca Mexican cantina, Destino. Amnesty International sponsored the event. Voices of Mexicans living in Canada and other concerned Canadian's were raised to speak out in protest against not only this killing, but the regime of corruption which plagues Mexico these days.

It struck me, as I drove home, that here were not just 43, but thousands of people in a nation where masses of Canadians visit daily, being murdered in drug wars and at the hands of corrupt police and politicians. And here was I, safe in Canada, worried about the placement of knobs on a stove. I wonder how many of those in thrall to the drug lords and corruption of Mexico would rather be in my place, even with ALS. In many cases, I have a better life expectancy, and in almost all cases, a better life than they.

This doesn't mean I don't want my new stove: I do. Nor does it mean that I won't shop for it some more: I will. What it does mean is that I, along with the rest of us, should never forget our privileged lives, be they long or short. It means that we, all of us, should speak out against corruption and cruelty no matter where it happens. I was reminded today that I am part of a world community, one that suffers at the hands of evil. As a part of that community, I bear a responsibility to speak out, to stand up for those who cannot stand up for themselves. I can still shop for a stove while doing that.

Saturday, 7 February 2015

Life, Death, And The Whole Damned Thing

It's an empty kind of morning this morning. It's not that things aren't happening; they are. A caregiver is here this morning; we've done my stretches and she is cleaning my apartment right now. I've had a couple of calls already. Plus I have ribs in the slow cooker for the wine making party tonight. I say it is empty because I am almost neutral in how I feel emotionally and physically. I don't feel bad, I don't feel good. I feel... bland.

My daughter recently commented that everything in my blog was dramatic. I wonder about that. This post, for instance, seems to completely lack drama of any sort. On the other hand, there are a fair number of things that happen in my life which give me pause, make me wonder, cause me grief. I don't know that writing about them is dramatic, so much as it is an expression of the emotional impact so many things have on me. The more I struggle with my limitations, the greater the impact of almost every daily event is on me.

Yesterday, for example, was in fact a dramatic day for me, so much so that by the afternoon, when I picked up Catherine to go shopping for wine supplies, I was pretty much on the edge of tears. It wasn't the early start or rush to get dressed for a TV crew that had this dramatic impact on my emotions; it was the act of discussing death, my plans for my own death, which really had an impact on me. This is not an easy subject. I guess this post now has some drama in it.

The real fact for this morning is that the emotional effort of yesterday still has me kind of worn out. Some subjects just take it out of me. Discussing my illness and my plans for ending my own life are not what I would call easy topics. The talk is tiring. It left me emotionally, and even physically, off balance for the remainder of my day. I suspect that today is a counter-balance to that effort.

The headlines are still full of opinion on the Supreme Court of Canada decision to open the door to physician assisted suicide. There are all kinds of opinion, ranging from the fearful, slippery slope to the religious objection. In the end, none of them are sustainable when viewed from one simple reality. It is easy for someone else to bear my pain and suffering; they don't feel it. Put them in my place, let them feel what I feel, then ask them the same question.

Our religions, based as they are in ancient cultures and beliefs, have no framework for reconciling the power of medicine these days. They have no tools for seeing what modern science can do, nor do they have answers for modern medical ethical questions. If I were treated with the medical methods of our ancient forefathers, I would be dead already. There would be no question about taking my own life; that question would have been answered in the natural course of life in antiquity. My death would have been attributed to the will of God, my illness attributed to my sins. There was no method for understanding, or for treating, or for maintaining life.

All of this thinking, and feeling, and contemplating is making me tired. I am going to die. There is nothing dramatic about that statement; it is as normal a part of life as being born. Certainly it is an exciting transition but it is no more dramatic, in the scheme of our complete biosphere, than any other birth or death. Let's just leave it at that.

Friday, 6 February 2015

Living With Dignity

This morning the Supreme Court of Canada ruled that a law that makes it illegal for anyone to help people end their own lives should be amended to allow doctors to help in specific situations. It is a landscape change in those of us living with ALS. The court gave the legislature a year to come up with a legal framework where people with terminal illness will be able to choose the manner and timing of their death. I don't like to call this debate "dying with dignity"; there is nothing dignified in death. I prefer to call it "living with dignity", right up until that undignified moment when I die.

Shortly after the news hit the streets, at around 10:30 AM, I got a call from CTV News here in Calgary, asking me if I could do an interview about this ruling. Of course, ever the media hound, I said yes, asking them if we could do the interview at around 1:00 PM, giving me a bit more time to sleep. They arrived shortly before 1:00 and spent about an hour with me, asking me about ALS, my views on the ruling, and what impact it would have on me.

It was an interesting interview, one which I will want to see for myself. You never know how the media will cut and clip. CTV Calgary plans on putting a short version on during the 5:00 PM news, with a longer version on during the 6:00 PM news. I will try to watch both of them but I am not sure I will be home at 5:00 PM. Fortunately both will be online on the CTV website later this evening. The reporter, Shaun Frenette, is going to email a link to me.

This whole process is both exciting and exhausting. It's getting more and more difficult to do the things they want in an interview, stuff like background shots where I roll down the hall or into my bedroom. My arms hurt with all the rolling about, the lifting up and putting down of things, all so they can use a couple of seconds on the air. It's the nature of the media to have lots of footage and use only that which completes their narrative.

Of course there were the questions about death and dying, the standard questions about ALS, and the usual one where the observation was made that "I look great" so how could I want to die. It gets hard sometimes, to continually tell people that ALS is a disease where you look fine, in many cases right up until the end stage, until suddenly you need breathing assistance and feeding tubes and personal care. I'm not there, but it is coming, regardless of how I look.

I will watch the interviews tonight. Once again I will be reminded that I am somewhat of a poster child for ALS. I have it, it is taking my life away from me, yet here I am living to the fullest while I still can. The real message I want people to understand is that this disease will kill me; I can die in an undignified, harsh manner with tubes and nurses and doctors all round, or I can die with some semblance of peace and dignity, here at home. I simply want the ability to make that choice when the time comes.

Thursday, 5 February 2015

I Was Wrong... Again

Okay. I admit it. I was wrong. I should be getting used to being wrong with ALS. Every time I think I know something, this disease teaches me that I don't really know anything at all. Today I had a male care giver, the first time this has ever happened. I was very worried about it. I had all kinds of presuppositions about a male caregiver; that he would be rough, that he would be awkward, that he would be unkind, that he wouldn't do the home making part of the job. I was wrong on all counts.

It's not very often that you meet someone and you feel you can trust them almost at first glance. Mohammed walked in the door smiling, something which always helps; with the first words he spoke, I felt at ease. I had been steeling myself for someone who communicated poorly, handled me roughly, treated me with less than an ideal level of respect. What I got was just the opposite. He was gentle, kind, respectful and helpful from the moment he walked in the door. He didn't, not even for a moment, assume command and control. Instead he checked with me at every stage of the way, showing an intuitive knowledge of when I needed privacy and when I needed care.

I talked to my daughter last night about my fears with respect to having a male caregiver. While understanding of my concerns, her first comment was that perhaps I was concerned about the gender/power dynamic. It gave me pause to think; I asked her if she felt I behaved that way. Her comment was enlightening. She said "Dad, you have always treated men and women differently, even with your daughters and son." I asked her if she felt it had negatively impacted her life, to which, after a moment or two of thought, she said "Not really, but I've always noticed it." I wondered what she wasn't saying.

It's true that I am, deep inside, perhaps a sexist, perhaps even a bit misogynistic; maybe I am being to gentle with my self-opinion there. It's a part of my personality which I work very hard at keeping in line; it's one of those things I don't like about myself yet seem unable to rid myself of. I have always done my best to put those thoughts far behind me, to treat women with respect and fair consideration. Obviously I have been fooling myself; my basic instincts still show through.

Today was a learning moment. To find that having a male caregiver was as good as, and in some cases better than having a female caregiver was enlightening. Physical things, like his upper body strength, made exercises easier. He had no trouble with my preferences around having a clean floor. I doubt he would have argued for a moment had I remembered to ask him to take the garbage out. And he was easy for me to talk to. I wasn't expecting this.

It's never to late to learn something. Thanks to the things that ALS puts before me, I suspect I will keep learning things right up to the day it all ends.

Wednesday, 4 February 2015

Not A Bad Day

It's been a long day today, long enough that my morning blog is now an evening blog; a situation which seems to be ever increasing. My day started early, with waking up so that I could be at the ALS clinic by 12:30 PM. After the clinic, I went immediately downtown to pick up Kate so we could go to dinner and a movie. After the movie I dropped her off in the deep south of Calgary and made the trek back to my apartment in the northwest of the city. As the White Rabbit said "I'm late. I'm late."

The clinic visit went pretty much as expected today, with the usual mix of good and bad news. The good news is that my progression remains slow and my breathing is still good, almost unchanged in the last year. The bad news is that I am still progressing, with measurable, though very small, losses in my arms and hands. The folks at the ALS clinic are going to help me with an application to the Alberta Income Supplement for the Handicapped, which will add about $400 to my monthly income. It's not an answer to all my problems but it is one of many things I will need to have in place soon.

Perhaps the most significant issue of the day was my possible involvement in a new drug study using a drug called Pimozide, a drug which is particularly effective at stabilizing neuromuscular function, meaning it can strengthen the connection where the motor neuron meets the muscle. It is hoped that this strengthening of the neuron connection will slow the progress of ALS. Unfortunately one of the possible side effects, one of the issues the study will have to deal with, is an increase in blood pressure and potential heart problems. Since I already have had to deal with athersclerosis, including a couple of minor heart attacks, angioplasty and seven stents in various arteries, along with the DVT in my left femoral vein, I am not a good candidate for this trial.

This is not all bad news, however. The money from the Ice Bucket Challenge is making its way through the research system. Projects with have languished thanks to lack of funding are now being funded. Studies with have been on hold for lack of money are now moving forward. There are some exciting new studies coming up and I am on the list. There is a study involving a herbal source medication which is starting in a couple of months; I am an ideal candidate for that one. The money we raised is already starting to make a big difference. There is more exciting research happening now than has happened in years.

So while my day was long, it was certainly worthwhile. On top of it all, I got to have dinner with Kate and we went to see The Imitation Game, the movie about Alan Turing. Not a bad day, not a bad day at all.

Tuesday, 3 February 2015

My Life As A Car

Another day has come and gone. Another young woman has let herself into my apartment, gotten me out of bed, helped me in the shower, gotten me back into bed, helped me dress, and stretched me. Another care worker has seen me "au naturel". Another woman I barely know has given my naked body a close order inspection. Once again, it was all business, taking care of me so I can continue to live something vaguely resembling a normal life.

Some days I feel like an old car, rumbling down this endless highway, bits and pieces falling off at each bump and jostle, sometimes a small nut or bolt, other times something major that everyone can see, yet on I go, the drive train still at least semi-functioning. Sometimes nothing falls off but some small thing, or not so small thing, breaks or stops working; one time it will be windshield wipers that fail to swish, another time it will be radio that won't turn on, or perhaps a glove box that nobody can get to close any more.

These broken parts and failing pieces are highly visible on occasion; a body piece falls off or the transmission fails. Other times the damage is only visible to those inside the car, those intimately involved with this ongoing voyage. Sometimes nothing happens at all; then I wonder what will happen, for surely as my car slowly breaks to pieces something will fail. Sometimes the inner parts which break are the ones I notice the most.

There is gas in the tank. The motor still runs. The steering works most of the time. The headlights are dimmed, yet functional although the turn signals failed long ago. And yes, the horn works. The question is not how far or how long I can go, but how I can keep going in such a state of disrepair. Yet onward I go, rumbling and grumbling along life's highway, trying hard to remain oblivious to that which I cannot change.

It's a good thing this carriage of mine doesn't go all that fast. The brakes gave up long ago. I am trapped in forward motion, unstopping. I will travel this highway until sufficient parts of me are broken that I can no longer travel. I will drive myself until the wheels fall off. I feel for my passengers, whoever they may choose to be, for this is an uncomfortable ride, never knowing if we will make the next turn, top the next hill, see the next horizon. At least I get to drive; they just get to watch.

Monday, 2 February 2015

It's Normal, Only Different

On Friday, home care came late, so late that I just told them to skip my shower. I planned on having one on my own on Saturday morning, so no worries. Unfortunately things did not work out that way. The shower frightens me, enough so that I will find reasons to avoid it. I need encouragement and help to get this part of my life in order.

So today, the new woman in my life, who shall, for the moment, remain anonymous, came over to assist me with my shower. I don't need help cleaning myself. What I really need is someone holding the wheelchair when I transfer out. The floor is wet and the chair slides, something that has disaster written all over it. She helped and I showered.

After my shower I went back into my bedroom and on to my bed so that I could get dressed. At that moment all the activity and exercise cut in, and I had to go pee. I announced my need and apologized, to which she asked "Why are you apologizing? Everyone has to go pee when they get up. It's a normal part of life." I retorted "Yes, but I have to pee into a jug!"

Her response was brilliant, a great reminder of perspective and how unhappiness is a willful state. She replied "So now that you have so much to be happy about, you have to find something to complain about. You complain about peeing into a jug. Why?" I have to confess that the comment put me in my place right away. She is absolutely right. So I pee into a jug. Who gives a rats ass? I can look at it as embarrassing and inconvenient, or as just a simple fact of my life, and in many ways far more convenient that those who have to wait for washroom availability.

It's all about perspective. I do the same things in life that everyone else does. I just do them differently. Everyone showers, or bathes. I do too. Everyone gets out of the shower on to a wet floor. I do too. The only real difference is I get into a wheelchair. Everyone dresses; I just do it a bit differently now. Everyone goes pee; I just have a different system than some.

My brother once said that suffering is a part of life, but that misery was optional. Peeing into a jug is nothing to get miserable about. Having someone see me when I pee may be awkward but it's nothing to be embarrassed about. It's just normal life, only different.

Sunday, 1 February 2015

You Just Never Know

A woman has come into my life. I thought that this part of my life was over, that something like this could never happen to me. I thought that no woman would ever want me in my damaged, terminal state. Yet here she is, fully aware of what is happening to my body, what is happening to my life. I am as shocked as anyone could be. She has known me for a while yet I had no idea she had this interest in me. She doesn't read my blog, doesn't see these thoughts, although I am pretty sure she knows that I think them.

Today was a scene of domesticity. She came over after lunch and we just finished watching the Superbowl. She chose to cheer for New England simply because I was cheering for Seattle. She knows very little about football and even less about American football. Yet she found great joy in backing the winning team in what was a close, tension filled game. I don't mind; it was fun to have someone cuddled up next to me on the couch as I watched the game, getting me a coffee or snacks so that I didn't have to make the transfer to and from my wheelchair.

Now she is busy in the kitchen cutting up the various ingredients for a Greek Salad. She is doing this so I can take the time to write. There is no quid pro quo in this, no expectation of return to her for doing this part of daily living. In fact there are a number of things she does that one would not expect in a "normal" situation, things like dealing with my jug, helping me with my coat and shoes, making sure my legs are moved and positioned as necessary.

She seems unfazed by the extra help and time I need. I will apologize for some limitation, for her having to fetch something for me. I will express concern about her being involved with someone with such poor prospects and so little money. She says to me "I knew all about this before I got into it." There is no expectation of return, no thought in her mind that I have something to offer. She seems quite comfortable with what is happening to me and how ALS will progress.

I am not sure how this will change my life or where it will take me. What I am sure about is that it is such a pleasant feeling to have someone in my life who understands what I am going through and seems perfectly willing to go through it with me. She laughs, finds humour in things I say or do, and doesn't seem to want to judge me for any ideas I have that are different from hers. She accepts me for whom I am, at least for now.

It's a strange thing, the way life works. I have no idea how long this will last, nor when it might end. All I know for sure is that I am going to live in the moment and enjoy it. It proves that you just never know, even though I thought I did.