The Proper Thing Or The Right Thing?

I feel guilty, like I have failed, like I have done a bad thing. It's a feeling of self-judgement with which I have spent most of my life. I have always felt like a disappointment, not living up to the expectations of others. I don't feel worthy.

That underlying feeling is why I think so many of you are judging me for my failure to manage my finances in a more effective manner. There are so many things I think others will judge me on. Perhaps if I hadn't spent so much on travel, perhaps if I had gotten rid of my truck a long time ago, perhaps if I didn't go out to the bar with friends; these are all the second guessings I put myself through on your behalf, regardless of those near me telling me it's my life to live.

Here is the reality. I struggle, continuously, with "doing the proper thing". Even with that feeling, however, I constantly make the choice to "do the right thing for me". I have this "self" focus for one, and only one, reason. I have ALS and it is killing me. I am going to die, soon, from the terror and ravages of a disease with no treatment and no cure.

Each and every decision I make starts with the assumption that I will never get a second chance to live the life I have today. Each and every decision is coloured, tainted by the knowledge that tomorrow I will not be able to do what I can do today. So if I choose to do something later, I am taking a pretty good chance on not being able to do it at all. I am, by the very nature of this disease, compelled to make choices for today, like the grasshopper, and not for tomorrow, like the ant.

I don't always make the best decisions. What I try to  do is make the decision to live for today, to live with ALS instead of dying with it. I choose life, however bad that decision may be from a financial perspective.

I Am Officially Out Of Money

It's happened. I knew it would happen but I was hoping it would happen in July. Unfortunately I was out by a month. My deposit came in from my RRSP today. It was half of what I expected, and it was clearly the last withdrawal, the end of my money. As of this moment I am officially, completely, thoroughly and totally... broke.

I had planned for my RRSP to last until the end of July. However the crunch in the stock market took care of that. It doesn't really make a lot of difference; it was only a matter of time. Declining income, the loss of my apartment, the increasing damage from ALS; I think my time is getting close to being over. It is perhaps poetic that this should happen as I finally get ready to move back into my home.

Of course my truck will be the first thing to go. I can't make that payment anymore. That should happen sometime over the next month or so. I was wondering what would happen first, Would I lose my ability to drive, or my truck? It looks like the truck wins. After that, who knows? Certainly Visa and Mastercard are going to be unhappy. They are next in line.

I am going to have to figure out what to do about my mortgage. I can probably get away with things for another month or so, but by my birthday in July I will roll into arrears on my mortgage. It will take them a while to evict me, and it will make for fairly bad press, but that is what is likely to happen.

My simple hope is that I will not live that long. That was the original plan, that I would die shortly after my money ran out. Unfortunately it looks like I will outlive my finances. I don't know that it's a bad thing; it's just the final insult from this shitty situation. It could be worse. I'm just not sure how.

A Tired Day

I didn't write this morning; I'm doing it this afternoon instead. There is no rule which says I must write in the mornings. It's just a habit I have gotten into, a single discipline in a fairly undisciplined life. To be honest, I was too tired to get up this morning, not so much from ALS as from the late night with the boys. I got home as the sun was coming up.

It's been said that I push myself too much, stay up too late, burn too much energy. The are those, my Mom and Katherine included, who would like me to go to bed earlier, to take it easier, to rest more. I suppose it is true. I am working very hard these days to squeeze every little bit of life out of what life I have left. I want to end each day exhausted, having done enough to make even those who are healthy feel tired. I want to take each hour and live every minute in it.

This means some nights I will stay out later than I should, I will do more than is good for me. I will feel the exhaustion in the morning, almost unable to get moving. That was this morning. We had things to do today, a picnic in Kananaskis being foremost. We were going with my friend Mike, so we had a timeline. But a late night last night kept me wanting to sleep.

Unfortunately it was more than just overdoing it last night. This morning my left shoulder was in a great deal of pain, my left arm was particularly weak, my left hand was aching, and my fingers were still tingling. So I lazed and lazied about until the absolute last minute, dressing only once Katherine arrived with the supplies, finishing just as Mike arrived.

It will be an early night tonight. Tomorrow will be a rest day. Then I will get busy all over again.

Paresthesia - We Don't All Get It

My fingers are tingling. It never stops. It started with them just "falling asleep". Now it's there almost all the time. It's called "Paresthesia". It's not listed as a common symptom of ALS; in fact many suggest it is not a symptom of ALS at all but of something else. I'm not so sure. I've got it, it's happening. It happened in my legs too, as they began to fail substantially.

That's part of this disease. So much of it is related to other things. You are always suspicious of symptoms; they might be from ALS, and likely are, but they also might be from something else. With my weakening body, all kinds of opportunistic illness can take root, from the DVT in my legs to infections to side effects from medications. I get it all.

The reason I am fairly sure this bout of paresthesia is ALS related is because it's not my first go round. I had it really bad in my legs before I went into the wheelchair. I still get it in my feet on a regular basis. So we can add another item to my list of lifestyle annoyances.

Paresthesia doesn't hurt, per se. It's more of an irritation. As my sensory nerves get a form of cross-talk from my motor nerves, they get more information than they can handle. That data overload shows up as tingling. The tingling is a light sensation, like very gentle pins and needles. It's happening right now, as I type. It's not what I would call pain, except for being a pain in the ass.

I can still feel everything else, plus I get to feel the tingling. The paresthesia is relatively transient; it will go away at some point, especially if I focus on it. In fact, right now, as I type and think about my finger tips, the feeling goes away for a moment or two. It will come back, most likely when I am not thinking about it. That's just the way this stuff works; when I focus my body will do its best to behave, when I don't focus, the ALS takes over.

Choosing The Battle

"Pick your battles." "Ask if this is the hill you want to die on." There are so many adages about making the decision when to fight, be that a physical fight or a psychological fight or an emotional fight. What ever it is, you have to choose your battles wisely; you may not get another chance, or taking this chance may take too much out of you.

But what if your battle is the simple act of going to the toilet? You don't get to pick that one. What if getting dressed is one of the toughest fights of your morning, only to be reversed in the evening, not with any less difficulty? There days when not dressing just seems to make a lot more sense. Unfortunately it's hard to have company over when you are in your boxer shorts.

What if you struggle, even with the emotional impact of getting up, questioning your value, the value of your life, the value of that which you are getting up to do? This is not depression. This is enforcement of the adage. Pick your battles. When almost everything is a battle the process gets a lot more complicated. When everything drains you, everything becomes a fight.

People look at me and wonder at how energetic I am in the face of this disease. What they don't see is the 10 to 12 hours a day I spend in bed. They don't understand that I am choosing to fight this battle on my own terms, and those terms include looking, or acting, or being, energetic when I am up, and exhausted when I am down. That's all it is, an act. I look like I am energetic because that is all you get to see.

Those who are with me on a daily, and nightly, basis; they see the tiredness. Those who see me sleep and are forced to watch me wake up and dress; they see the battle. While the rest of the world sees me while I am up, while I am positive, while I look like I have energy, it is those who see me when I choose not to battle who understand the real impact of ALS on me. Those people see the fight.

Homecoming Blues

Yesterday was a tough day, at least for most of it. The morning wasn't too bad; I got up early, excited to be headed home. I figured that even if the elevator wasn't done, it should be sometime this week. I was ready for that. I was also expecting to get the parts for me wheelchair so it could be fixed. And finally, I would be home for a Trivia night. None of those things has worked out quite how I expected.

The elevator will take at least another three weeks. It seems that one of the core parts, the piston that lifts the elevator up and down, was the wrong size. Nobody measured it until they went to put it in. These parts are manufactured as needed, so the elevator company had to order a new one. It will not be in until this week at the earliest. After that they need to install it, finish the job, and get the elevator inspected. It all takes time.

Then there is the wheelchair fiasco. There are two small clips on my wheelchair which are broken. These clips hold the frame in place when the chair is folded up, and ensure the seat rails hit their holders when the chair is folded down. They are small, simply parts which have to be ordered from the manufacturer. When I left town, the service department at Medichair took pictures of the frame so they could order the clips. The manufacturer needed some additional pictures and information. Nobody thought to call me to ask for more pictures or information. It just waited until I got back.

There there is my Tuesday trivia night. The Unicorn Pub in downtown Calgary, a landmark in the city center, has lost its lease. This means Tuesday night trivia has had to relocate. The owner of the Unicorn is also the owner of the Libertine and the Below Deck Tavern. The venue at the Libertine is upstairs, with no elevator. The venue at the Below Deck Tavern is downstairs, with no elevator. In both cases, I am excluded. This will be a major blow to me. I will miss what over the last five years has been one of the regular highlights of my week. I will miss my friends. They will forget me; that's what I am afraid of. This is the biggest blow of all from yesterday.

Thanks to help from Katherine I am put up in the Holiday Inn Express for a week. Here I am almost home, at least home in Calgary. Here I can get in and out, do errands, go shopping. I am settled and she is with me; that makes a giant difference. After this week I will re-evaluate my location, perhaps spending the last two weeks in my apartment sans elevator. After all, I don't have Tuesday's with the gang anymore, and Katherine can walk up the stairs.

Two Road Trip Things That Really Piss Me Off

I've done a fair bit of road tripping over the years. It's only in the last couple of years, while in a wheelchair, that I have developed a real sense of distress over some of the things handicapped travelers face. I think what upsets me the most is that it would take so little to fix some of them, yet they remain a challenge.

The number one piss off for solo road tripping with a wheelchair is self service gas. If ever a facility or service was designed to be difficult for someone in a wheelchair, or someone with any sort of mobility challenge, this is it. These suckers are made for misery. First of all, there is the simple challenge of getting in and out of the truck at a self-serve pump. It's not that I can't; it's how difficult it is. I have to get close enough to the pump so you can fill up, but far enough away to ensure I can unload my chair out of the driver's side, a truly non-trivial task.

One of the best ways to deal with this is to go to a full service gas station. Sure, you pay more. That's another cost of ALS. However, finding a full service gas station is the real challenge. There are many cities in Canada where there are absolutely zero options for service. It's self-service or nothing. Even in the USA, with its vaunted ADA requirements, it can be a challenge. My favourite are the gas stations where they say "Press Button for Handicapped Service", but to press the button you have to get out of your vehicle.

I personally believe that every gas station, everywhere, should be a split service, where I can get full service for a slightly higher charge, and where able bodied people can get self services at the regular price. Sure, it's discrimination, but at least I could get gas.

The number two piss off is hotels and hotel staff who don't understand what "handicapped" really means or who have no idea what their handicapped rooms look like. A great many front desk staff in hotels never actually go into the rooms, especially the handicapped rooms, to see what the look like. You would not believe the number of times I have had a front desk person say to me "Wait a minute while I go look" when asked if their handicapped room has a roll in shower.

Then there are those properties with modified rooms which claim they are wheelchair accessible. It's just plain stupid what some hotels call a wheelchair room. The interesting thing is that it has almost nothing to do with the cost of the hotel; I have seen this kind of idiocy at both high priced and low priced properties. One of the best places, and the most consistent place, has been the Super8 Motel chain. They seem to do better than anyone else so far. The real delineator is the age of the property; new properties tend to have better wheelchair access, sometimes even ADA right.

The final challenge along the hotel issue is location. Here in Canada there is no standard for wheelchair access, nor any sort of requirement. Many hotels have little or nothing to offer. At least the USA has the ADA, a way to enforce non-discriminatory access for wheelchair travelers.

There are a lot of other small piss offs, but these are the big two. It would take a book to list all the minor ones. I know, I shouldn't complain. At least I am out here. But you try traveling in a wheelchair. Trust me, you'll complain pretty quickly.

I've Learned A Few Things About Road Tripping

I've learned a few things on my recent road trips, things which I probably should have known already, or things with a probably new already which have crystalized in my mind, become more real on these last couple of trips.

First and foremost, I've learned that I can still do it, still get myself up, out, and about, still make the drive, still handle the day. There is no doubt in my mind that I am losing this ability, losing it quicker than I would liike, but for this moment, here and now, I can still look after myself on the road.

Second, I have learned that it's really not worth saving a few dollars to stay in a place unsuited to my needs. This falls under that category of hidden expenses of ALS, the hidden costs of traveling in a wheelchair. I need a decent hotel room, not just for the wheelchair amenities like a roll-in shower or bars beside the toiler, or, for that matter, a higher toilet suited for handicapped access. It's just as important psychologically that I have a decent place. The truth is that I will need help on occasion. Low budget motels cannot, do not, offer that kind of help. So I pay the price and get a hotel or motel that works, that has support staff, that offers me help when I need it.

Third, I've learned that traveling alone doesn't mean being lonely, although I get that way sometimes. Almost everywhere I go I meet people. Sure, I was like this before the wheelchair, before ALS. These days, however, I find more and more that people are willing to open up, willing to be friendly, willing to be helpful. In large measure, people are kind and good, something I have re-learned and confirmed on this trip.

Fourth, although probably more important than three, I've learned the importance of having my gear, things like my M-rail, my shower seat, a laundry basket, and so on. It's a lot more than a suitcase these days. I need these things, especially when I am staying in a location for more than one night. These tools make my life easier, they make it work. They extend my limited strength. I need them.

Finally, speaking of one night stands, I have learned that doing too many in a row is a bad thing. I need to rest every couple of days. So my standard now, and moving forward, is, and will be, two days of travel, one day of rest. This means I spend every third or fourth day doing nothing, an ideal scenario for road tripping, especially with ALS.

I've learned lots more too, things about myself, things about traveling with Katherine and those others who have taken the risk of a trip with me, to many things to list in a blog. Perhaps the best thing I have learned which is not listed here, is that I continue to learn. There will be other trips, other travels, other passages. I will learn from them too.

Since I Am Awake

I woke up this morning, sort of. It was a little after noon, so the adjective use of morning is, in fact, incorrect. I woke up today; yeah, that's it. I woke up today, sleepy as usual in spite of a full nights sleep. As is my wont, I lay in bed for about an hour, giving my diminished musculature an opportunity to slowly catch up with my mind, itself slowly grinding its way up from the pit of sleep to some sense of wakefulness.

I woke up today. After a decent period of supine preparation, I arose, fully intending to wheel into the bathroom, use the toilet, then have a shower. I got started. I swung my lifeless legs over the edge of the bed, using my arms as a personal crane, lifting and pulling them into a wheelchair transfer-ready position. I transferred, an increasingly delicate operation these days, with the assistance of my M-rail, so wisely brought along for this trip. Then I looked at my computer.

I woke up today. My computer grabbed me in its gravitational pull, my fattened bulk drawn closer and closer to the black hole resting on the desk across the room; the urge to write like a magnet, the computer like a giant steel block of attraction. I gave off all hope of resistance, rolling to the desk, moving the desk in front of the window so I could write with a view. I made coffee; it sits beside me, lubricant for my thoughts and feelings to move from mind to keystroke.

I woke up today. My hotel room overlooks the Spokane River, less river-like and more lake-like at this particular bend. It is not so much flowing, as puddling, beautiful and smooth, a giant pool of crystal clear mountain water. The boats barely move at the weakened tug of the water's hidden pull. Sparkling in the sun, both water and boats reflect the beauty of the surrounding hillsides, set thin with pine, rising slowly to soft, low, peaks, small points at the top home to antennae for who knows what, their easy slopes perfect for the massive homes of those who can afford this idyllic lifestyle.

I woke up today. I am not sure if that is good or bad; some days it's hard to know. I am awake. I have written. I am sipping my coffee wondering what next. Perhaps that shower. Then, perhaps I will dress, go out, explore Coeur D'Alene. Barbara Walters once called this place "a little slice of heaven". I should go find out, since I am awake.

I'm Not Motivated To Move

The desert is gone, behind me, back there about 200 miles. There is no more sun outside. It's a dull and dreary day outside, grey and raining, clouded skies. That's the way I feel inside too, dull, grey, cloudy. My motivation level is low; I don't really want to get moving. All I really want to do is sit here, surf the web, watch TV, rest.

This will not be my day today. I have a room booked in Couer D'Alene, about 6 1/2 hours north of here. There's pretty much nothing but mountain wilderness between me and my next bed. I've prepaid the rooms, so I want to get there. It doesn't really matter if I get there at 7:00 PM or 10:00 PM, so I don't have to push myself while driving.

What I really have to do is get going, get motivated to make the voyage. What I really have to do is get dressed, take my pills, pack, load my gear, get in the truck and start driving. My first stop, just across the street, will be to fuel up. I want to do it here in Oregon; this is a full service state, no self serve here. It means I don't have to search for someone to put gas in the truck for me.

Next, perhaps McDonald's for a breakfast sandwich and coffee, that is if they are still serving breakfast. I suspect they aren't; breakfast seems to end at about 10:30 AM everywhere I go. I must be one of a very few people who actually sleeps until 10:00 AM. So if not that, then just a coffee. Fortunately I have some peeled oranges, Baby Bell cheeses, and other snacks. I can just go, without worrying about eating.

In all of this, there is still no motivation. I am not doing this because I want to; I am doing it because I feel like I have to. I could, if I really wanted, just stay here. All it would cost is a night's hotel booking. I need to stop thinking like that. I need to keep myself moving. To stop, to give up, is to die.

I Would Want One More Normal, Ordinary, Regular Day

A few weeks ago the editor of the MDA/ALS Online Magazine asked me if I would be willing to write a blog entry that would tie in with ALS Awareness Month in the USA, the month of May. I said yes, and then was asked to answer this question.

Complete this sentence: If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more _______________________. 

It is such a difficult question to answer. ALS has taken so much from me, stolen so many "one more times." The loss of my legs, the weakening of my arms, the loss of my career, the loss of my financial well-being; all the losses of ALS, and those which are coming, make it almost impossible to choose just one thing. Then I realized that the thing I wanted most of all was one more regular, ordinary day.

I want a day where I wake up refreshed instead of exhausted before I lift my head from the pillow, tired before my day even begins. I want a day where I just swing my legs over the edge of my bed and stand up, without an M-rail, without transferring to a wheelchair, without being afraid that I might fall in the process. I want a day where I can walk to the bathroom, stand up to go pee, shower vertically instead of sitting down. I want a day where I can dress easily, upright, instead of sitting on the bed fighting with compression socks and pants.

I want a day where I can go into my kitchen and actually see what I am cooking on the stove top, where I can reach the things on the second shelf, or even higher. I want a day where I can get the milk out of the fridge without fear of dropping it, without hands that shake so much it spills as I pour. I want a day where I can unload and load my dishwasher. I want a day where I can sweep the floor.

I want a day where I can take my grandchildren to the park, to play with them, to throw a ball or chase them in a game of tag, maybe even take them fishing. I want a day where I can pick them up, hug and hold them, carry them when they are tired, where I push their buggy instead of them pushing my wheelchair.

I want a day where I can go to work, contribute, make a difference in my career. I want a day where I can go into a meeting room and not have to adjust chairs to make space for my wheelchair, or go out for lunch and not have to worry if the restaurant has steps or high tables. I want a day where I can pick up a coffee and not worry that it might spill all over me as I drink it.

I want a day where I can go home and not worry if the elevator is working, where I can take out my own garbage, where I can walk across the street for groceries. I want a day where I can go to the market without worrying if the electric shopping cart is in use. I want a day where I can cook dinner and not worry about burning myself as I reach across my stove.

I want a day where I can undress for bed without having to sit down, where I can simply go to sleep without having to arrange pills and pillows so I can reach them at night. I want a day where I can make love. I want a day where I can close my eye and my last thoughts are not about how terrible this disease is, about what it has stolen from my life. I want a day where my last wish was that I will wake up tomorrow, not the reverse.

If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more normal, ordinary, regular day.

I Lie Sometimes

I lie to myself. Self-deception is a skill I honed to a fine art during the three decades of my marriage. After all, you can't tell yourself everything is fine unless you can blind yourself to your realities. It seems odd that I am so good at deceiving myself yet have perpetually failed so miserably at deceiving others. It seems I am the only one I can lie to... almost. I lie every time someone asks me how I am doing. I say "Fine"; then again, that's all they want to hear.

It's funny, the things you take away from life. Road trips are a great example. The Great Elevator Escape has taught me a lot about myself, a lot about how I handle relationships, a lot about how I deal with adversity, and an awful lot about how I lie to myself, and in turn to others around me.

This skill probably arose from road tripping in the past. My ex-wife was tough to deal with around money. When we would go on a road trip, she would demand a detailed budget before she would set one foot outside the front door. I would have to set daily amounts for food, hotel, gas, extras; that's the origin of my infamous spreadsheet. She wanted it all as a certainty before she would consent.

Once I presented the budget to her, she would pick it apart, attacking my assumptions and demanding that we do it for less. This compulsion of hers once lead us to stay at a smoke filled, flea bitten, drug hotel in Portland, OR, simply because she had a coupon for 50% off. She didn't realize that hotels use a monstrous rack rate just so they CAN offer 50% off. The hotel could have been a set for a horror movie, or a National Lampoon vacation movie, one or the other. We stayed because she insisted, never realizing what she had put us into.

So I started to lie on the budget, believing that I could do it, make it work. This most commonly fell into the areas of food and hotels. I suppose I really started a lot of those road fights by telling her we could get a hotel for one price when I knew it would be a higher price. On the other hand, if I had told her the real cost, we would never have had any of the adventures we had as a family. Every vacation would have been at home, saving the money. For what, I never knew.

On this trip, I did the first budget with Katherine and she said "sure" immediately. I didn't trust it. I waited for the first three weeks for the other shoe to drop, for her to say something critical about my budget. She did, but never in an unkind or critical way. She observed that I had budgeted too low for hotels, but never said we had to stay in an uncomfortable flea bag because that was the number in the budget. At the end she said, "You were pretty close. Just the hotels. It's not bad."

For this segment of my trip, and for the first time I can remember, I did a road trip budget with real numbers for hotels and food. Not that it matters. A budget is a guideline, not a prison. It is a way of planning, not an iron bar on spending. I've known this for a long time; I was just never able to convince my ex-wife of it. So I lied. It feels a lot better to not have to bother with that pretense any more.

Hope Lives In Tomorrow

I am up, awake and out of bed, slowly struggling to get myself together. It's a noon checkout at the hotel here in San Francisco, a blessing which allows me to move more slowly, get a bit more rest, take it easy for a bit of extra time. I've just made myself a cup of coffee. I will write for a bit. Then shower and dress. Finally, packing and I am on the road to Sacramento.

My hotel room is on the second floor; the hotel is only four stories high. I think there are building codes which restrict building height in this part of town. There are no tall buildings nearby. My room looks out over the street where the usual traffic and tourist action takes place. It is a never ending variety show of Segway tours, bicycle tours, walking tours. 

Then there are the locals; in this part of town they range from people making their way to and from work, catching the bus, driving by, to the homeless person setting himself up on the porch of the room below me; the first floor rooms on this end of the building have direct street access. The security folks came and hustled the homeless man away; he crossed the street and fell asleep on the sidewalk. This morning he has gone, most likely moved off in search of a meal or a drink.

The sky is a low, dull grey, covered in clouds which could easily become a heavy fog but for the sake of a few hundred feet of airspace. The sunshine is heavily filtered, blocked into a somber grey. Into all of this I need to gather myself, to take my feelings and emotions, my stress and my fear, and get on the road again. 

I am doing that. I always seem to do that. It's not that I don't want to give up; I can't. I know of no other way to be. I always get up; I keep on going. No matter how I feel, no matter how distressed, or elated for that matter, the only direction I know of is forward. What's behind is behind; the future lies in front of me. The only place I can really live is in the here and now. The only place which offers hope is tomorrow.

I Wanted To Cry

I had a crying moment yesterday, only I couldn't. It happens to me every once in a while, that I will feel like crying yet the tears will not come. Were I to have had a few drinks, or perhaps more than a few, I might have been able to cry, might have been able to get that whole emotion out there. I have trouble with this when I am constrained by sobriety. I want to cry, but I can't.

This feeling doesn't just magically arrive. It's usually something that triggers it, often a major change in my life, perhaps a new piece of equipment or some confrontation with my limitations. When I keep it contained, it passes, slowly. When I can get it out, it passes, slowly. No matter what my condition, the emotional distress takes its own sweet time in leaving me.

Yesterday's sadness, it's moment of near tears, was triggered by something almost silly in its nature. I was working away at my computer, doing the photo blog that I have for road tripping. I wanted to reference something in my wallet, so I reached for my pouch, the one which now replaces my pockets, those being made difficult for me by the wheelchair. My pouch was sitting on my computer bag, on the chair beside me. So I reached over and grabbed it.

As I pulled it upwards and towards me, I thought to myself "Gee, it's heavy." I looked to see if it was snagged on something; no, it was free and clear. I looked to see if I had put something heavy inside it and forgotten; no, it was just the usual stuff. And I don't have that much money in it, so that certainly wasn't it.

Then it hit me. My pouch wasn't getting heavier; my arms are getting weaker. I took a moment to let that sink in. Then I thought about other things lately which have been getting "heavier"; my suitcase, my computer bag, the laundry hamper, the jug of water in the truck, even my phone seems to be heavier, especially after a few minutes into a call.

And then I wanted to cry. I couldn't; it wasn't there. But I wanted to, I really wanted to.

I Hate This Disease, Again, And Again, And Again, And Again

I hate this disease.

It is enough to draw me to the keyboard in the middle of the night. It is enough to awaken me from sleep, to draw me from drunken exhaustion, enough to drag me out of beaten, rugged, sleep. It is enough to force me to ask the damning question. How can this be?

I spent this evening with a wonderful family, with an amazing, vibrant child; with a loving, charming, intelligent husband, with a compassionate, caring wife. I spent this evening with a family, whose youngest member talked about the limitations of Mommy, how she could not stand, how her arms were weak. I spent this evening with a husband, with a father, who bravely and honestly faced a future so limited with the woman he loved. I spent this evening with a family ravaged by ALS.

It just doesn't seem right. How is it that someone so young could be forced to contend with the realities of this illness? I don't mean the daughter; she, on her own, faces this reality without any sense of anything which might be different. I mean the young mother, the beautiful woman who is and once was. How is it that she, of all, in that most unfair of most things, must face the relentless onslaught of this cruel and unusual punishment? I mean the loving husband, so perfect in his care, so unending in his compassion, facing the harsh certainty that the woman he loved, the mother of his child, will leave her all too soon.

This is the true cruelty of ALS. It takes us all too soon. It forces us, each and every one, to stare in the face of death. It demands, even from a small child, that we acknowledge the incremental failure of our physical self. ALS is cruelty incarnate, a bully that knows nothing other than unkindness.

I hate this fucking disease, I hate how it takes. I hate how it steals. I hate how it demands, destroys, diminishes, debilitates. I hate that it take such beauty, such love, such incredible wonder, and then trashes it on the ground like so much waste, as if it were nothing more than a garbage bag from a fast food joint, nothing more than detritus, nothing more than litter at the roadside.

I met wonderful today. I met amazing today. I met so much today, so much that will be gone, taken with this fucking, awful, nasty, terrible, horrible, vicious, ugly, cruel disease. I met a wonder and she will be taken from us, taken by ALS.

There has to be an answer. There must be an answer. It's got to be out there. Please God, tell me there is, or will be, a cure of ALS; not for me, but for the child that faces her Mommy and says "She can't walk; she can't stand; she needs help when she eats." Please tell me there is something for that little girl. We need a cure for this God damned, terrible, fucking awful disease. Please.

Oops, I Made Another Mistake

I make mistakes; we all make mistakes. Sometimes mine have a consequence somewhat larger than others, thanks to my life in a wheelchair. Yesterday was a great example, not only of the impact of a decision gone wrong, but also of how, when needed, I can still dig deep into my inner well of reserve energy, and get the job done.

Yesterday I left Lincoln City with no real plan for the end of the day. I thought I might dawdle my way down the Oregon coast, stopping here and there to enjoy the scenery. My intent was to get to either Crescent City or even Eureka, stopping there for the night. I left the hotel late, at about 11:30 AM, and then spent about a half hour getting myself some coffee and a breakfast sandwich. I finally, really, headed south at about noon.

There were plenty of stops, plenty of pictures. I had, so I thought, plenty of time. As I made my way down the coast, it became more and more evident that I would arrive in Crescent City sometime around 6:00 PM. When I rolled into town, I called a few local motels and hotels to get a wheelchair room.

It was in these phone calls that I was reminded of a road lesson I had forgotten. Friday is a busy day for all motels and hotels, especially in tourist areas. Senior citizens make up a large part of the touring population. Senior citizens book handicapped rooms more often than most other people. Senior citizens tend to stop earlier in the day, often before dinner. In short, here was not a wheelchair accessible room to be had in Crescent City.

Eureka is about 90 minutes from Crescent City. If I just hit the road I would make it there by about 8:300 PM.  So I took my cue from Marilyn Monroe, who once famously said "It's amazing how often 'ah, what the hell' is the right answer", or something like that. I hit the road again, headed south into the darkening evening.

It was when I arrived in Eureka that I discovered it was graduation weekend, not just for Humbolt University, bur for the College of the Redwoods as well. There was no room, at least no wheelchair room, in any of the inns in that dear town. The closest I could get was a Motel6 smoking room for $112, or a Super8 standard room for $180. The rest were upwards of $300, and none had handicapped access.

Ukiah was the nearest place of any consequence down the road. It was also about 4 hours away. Once again I invoked the spirit of Marilyn. Once again I hit the road. It was on this section of the drive that I sucked it up, and got the drive done. I arrived in Ukiah and got a room at the Quality Inn for $80, a perfect room with a roll in shower and all the bars in the right places. I warned them ahead that it would be a late checkout, and here I am.

I made a mistake, I should have booked ahead. I will probably do it again; it's in my nature to say "ah, what the hell". However I did book my room in San Francisco already.

Poly Bear

I've been staying in Lincoln City, Oregon in the Surftides Motel. It's an older property but it has been well maintained. The motel is right on the beach; you can take the elevator down the the second floor and walk down the ramp, or roll down the ramp as I did, to the upper part of the beach. There is a lower part down to the sand; unfortunately sand and wheelchairs don't go well together, even with my free wheel. I've tried.

Another hotel in this area is The Inn At Spanish Head. I've stayed there too, about 20 odd years ago. I remember that trip, that hotel, very well thanks to three separate events; one bad, one good, and one memorable.

Back in those days we traveled a lot in our mini-van. On this particular trip we were making our way up the coast, staying at motels as we went. The whole process of selecting a motel each night caused major stress between my then wife and I. My ex-wife was, and still is, all about the cost of something, all about the money. As one wise person said to me, "She knows the cost of everything and the value of nothing." Getting a motel was a nightmare; they all cost too much or were wrong for other reasons. No choice was the right choice for my ex-wife.

We had been through this fight in the prior several days; by the time we got to Lincoln City I had had enough. I simply chose a place I liked and we stayed there, notwithstanding the verbal slicing I got for my decision. The hotel was The Inn At Spanish Head, or as my kids called it, the upside down hotel. The lobby was on the top floor and you went down in the elevator to your room, and ultimately to the beach below. It was a real fight to get it; I paid an emotional price. I remember that.

Then a good thing happened. The kids absolutely loved the hotel. They loved that it was upside down. They loved that they could take the elevator down to the beach. They loved that they could go on their own while Mom and Dad watched from the balcony above. The kids had an absolutely terrific time and, after a suitable period of anger, so did my ex-wife. We had a great stay, although somewhat tarnished by the squabble over money.

When we headed home, a day or so later, we were about four hours away from Lincoln City when Meaghan, our second daughter, realized she had left her Gundt Poly Bear behind in the room. This was a disaster, a crisis of the first order, until I told her that I would simply call the hotel and have them Fed-Ex Poly home to us. We drove the 8 hours home, something I could do easily in those days, and then called the hotel.

The Inn At Spanish Head handled it well. They took my Fed-Ex account number, packaged Poly into the smallest possible container, and shipped him home. It cost me more for the Fed-Ex than it would have to buy a new Poly Bear. But I knew the value of Poly to Meaghan. She was so happy when that package arrived and she had her beloved bear once again. It was worth it.

I Just Can't Catch A Break

ALS does not take a vacation. Nor do any of the other illnesses known to mankind where we cannot treat or eliminate the symptoms. We can't even cure the common cold, although there are medications out there to reduce the symptoms so it has a lesser impact on our life. ALS, Alzheimer's, MS, Parkinson's; the list goes on and on, diseases from which there is no respite, for which there is little or no treatment. It's interesting to note that most of these are neurological diseases.

While I may be here in a beautiful location, enjoying the sights and sounds of the seaside, ALS continues to steal from me, continues to abscond with my abilities, my strength, my energy. Here, in this place of ultimate relaxation, I continue to fight to accomplish the simplest of tasks; getting dressed, getting into my wheelchair, moving about in a carpeted hotel room. No matter where I am, I am there and ALS is with me.

It's not that I have noticed a great change of late. I most certainly am aware of the trends in my body, my weakening arms, the loss of fine motor control in my hands, and now in my lips and cheek. The socially correct answer to people asking how I am is "fine", but I am most certainly not "fine". I am worse today than I was yesterday, and I will be worse tomorrow than I am today.

Sometimes it is the smallest things that really drive home this point. Right now I am in a hotel with a high bed. It is a real struggle to get on and off. When I dress, I need to get on the bed, so I like to dress before I get up in the morning, in this situation. I can work my pants back on while on the toilet, mostly, so I get dressed then go use the bathroom. Except this morning I grabbed a new pair of boxers I bought the other day, only to realize they were the wrong size. So I had to get another pair from my suitcase, the suitcase on the other side of the room. Which meant getting out of bed, getting new shorts, getting back on the bed, and finally getting dressed.

I've decided to revert back to my standard routine, the one I followed yesterday, where I go to the bathroom first, then get back onto the bed to dress. I am not in a hurry. I did the bathroom part, but not the getting dressed part. That high bed is real work for me, and I am in no hurry to expend that energy. ALS does not take a vacation; I just can't seem to catch a break.

On The Beach

I am finding it hard to develop any enthusiasm for writing today; I'm finding hard to develop any enthusiasm to do anything at all. I'm sitting in my hotel room, on the beach. I haven't even started to get dressed yet. I'm listening to the endless background noise of the persistent, pounding surf, the white foam of the waves forming far offshore, pushing and pulsing inward, relentlessly, endlessly. It's so much easier to sit here, hypnotized by the sound and motion of the surf.

This is a relax day. There is every possibility that I may not leave my room at all today, every possibility that I may spend the day here, order room service, and sit on my balcony. I get to have these days now and again, both on the road and at home. They are essential; recovery days where nothing is asked or needed from me, where there is no plan or destination. I need these kinds of days.

In reality I have no doubt that I will get bored at some point. Sooner or later I will get chilly, or have to go the the bathroom. I can use the shower here; at some point I will want to. Still, it's nice to sit here and think I don't have to do anything if I don't want to do it.

Yesterday was a long day; it started kind of late. I got so frustrated and upset with the conditions at the Motel6 in Tumwater that I left. After complaining to the manager, she refunded my pre-paid stay and I checked out at around 12:30 PM. I went over to Olympia, took a few pictures of the Capitol buildings, and then headed for the ocean. The drive time was supposed to be about 5 hours, or a bit less. I decided to take my time, stop to take pictures, have a nap on the beach, and dawdle just about everywhere along the way. I finally got to my hotel here in Lincoln City at around 8:00 PM.

Yesterday was a long day, a push day, a road day. Today is a relax day. Tomorrow I will explore the area. That is, unless I want another day on the beach.

I Will NEVER Go To Motel6 Again

Tumwater, Washington. It's a wet, rainy, cold nowhere, just about five miles south of Olympia, Washington. The day is as dreary as can be, with rain falling and the skies hung with a grey cloud veil, blocking out any sense that the sun shone here once, or might shine once again. My mood is easily reflected in the puddles that surround my truck. I know when I get outside I will be made damp by the unforgiving precipitation.

My mood is not only driven by the weather. I am in a dump, a Motel6 which, by any other reckoning could not be called anything other than a dump. The room smells bad, the floors are old and sticky, the bathroom sink has a large cigarette stain and a corresponding chunk missing where someone tried to chip the stain away. You get what you pay for; in this case, not much of both. This is what I get for staying in a place which advertises itself as having the "lowest rates of any national chain". It's a fight for the bottom where quality is the first, and worst, casualty.

The bathroom is the biggest part of this lunacy called an accessible room. First, and most dangerously, there are no safety bars at the toilet. This means I make a freehand transfer to and from my wheelchair. I can do it; it's risky, and hard work. The best part of the idiocy which is this room is the shower seat. It is set at the far end of the shower, a full five feet away from the shower controls. Even if I could reach the controls from the seat, the spray from the shower head would not make the distance. I would get wetter going from my room to my truck. There are other things too; these two are enough to get the idea.

There is one good thing. I will be leaving in the morning, leaving terrible Tumwater forever behind me, leaving the Motel6, the chain at the bottom, forever. I have decided I will NEVER stay in a Motel6 again, unless forced to by circumstance. Although I wonder if I might have done better to sleep in my truck.

Behind The Wheel Again Today

I'm going to hit the road again today. It's not that staying at my Mom's isn't good; it's very good. But the combination of needing a hotel for a shower, having to drive out to Abbotsford to see my accountant, and the general good feeling I get when driving, all makes me want to get behind the wheel once again. It's where I find freedom and some measure of peace.

It's going to be bad when I lose the ability to drive. At least, I think it's going to be bad. Every time ALS takes something away from me, I think of different ways to live, different was to accomplish old tasks, different ways to remain independent. I suspect it will be the same when I become trapped in a power wheelchair, unable to drive or walk, perhaps unable to lift or carry. I will find other ways to do things, other ways to feel that feeling, the feeling of freedom and independence.

Today my plan is, as noted, to drive out to Abbotsford. From there I will head across the border into the US. In many ways, it doesn't really matter where I go. I've been both north and south, east and west from here. I've already been on these roads, seen much of what there is to see. My plan, this time, is to be more like the tourist I was on the way to Vancouver. For example, I plan on spending at least two days in almost every location. Olympia, Washington is my first target.

Perhaps this is why I like to travel; it allows me to have goals, targets in an directionless life. That's also what the problem is with being stuck in my apartment. I have no target, no goal, no place to go or place to be. I am goal oriented; I need to be moving towards something, or perhaps away from something, in order to feel alive, to be motivated. My ultimate goal on this trip is San Francisco, to see a friend. Then, with any luck, homeward bound.

Of course the reason for this road trip, and my last, remains the same. My elevator is still not working. I'm hoping for month end. Regardless, that will be when I return home. I am running out of time, out of money, out of energy. Eventually I have to stop. Not yet; I am still in motion. Just eventually. Everything comes to an end.

Mother's Day

It's Mother's Day, a day where we honour our Moms. What's interesting is that Mother's Day did not start out as an honouring of motherhood, but as an association of Mothers protesting against the senseless ravages wrought in the Civil War in the United States. It was only after the hawkers of cards and peddlers of flowers got ahold of it that it became this commercial splurge, that it became its current self.

We talk about the abnormality of children dying before their parents. This is a thought which has only really occurred to those of us who were born after 1900. Prior to that, the death of a child was so common that names were not given until some time after a child was born, just in case. It was not at all uncommon for many children to die before thier parents, regardless of station in life. Queen Anne of England had 16 children, all but one of whom died in infancy. Her only surviving son, William, Duke of Gloucester, lived to 11 years of age then died of smallpox.

Much of the push behind larger families was to have surviving children, an ethos which continues in most third world countries. Even for my Mom, having children in the middle of the last century, five children was not considered a truly large family. On the other hand, having five boys in six years was considered just a bit unusual. The era of small families is a new one.

Even though I abhor the commercialization of this day to honour the sacrifices of motherhood, I too have succumbed, purchasing a small orchid for my Mom. I think the greater gift I can give to her is to be with her today, to give her the only gift I truly have remaining... time. It is likely that I will be the first of her sons to die, the first to leave a gap in her life unfilled by other children. It's not unnatural; it's just unhappy. For now, I will fill that gap as best I can by simply being here. It's not much; it's all I have.

Tongue Cramps

I had a great day yesterday, wandering down memory lane. Unfortunately I had a tough night last night. As odd as it sounds, I was getting muscle cramps in my tongue. They hurt like hell. Add that to my loss of fine motor control over the left side of my mouth, whereupon I find myself biting the inside of my left cheek while I sleep, and this kind of stuff makes for a rough sleep.

This whole bulbar thing, the loss of muscle control over my mouth and throat, has been coming on for some time. I noticed the first indications almost two years ago, with a slight lost of control over the formation of certain words. About a year ago, I began to notice the "throat clearing", which, in ALS, suggests a loss of muscle control with the swallowing and throat muscles. I started "choking" on food more often. My daughter told me to be more careful when I eat.

At that time, I also noticed a more of a challenge with word formation. It wasn't much. In fact my daughter dismissed it saying "Dad, you've always had that problem, and that whole dramatic pause thing." That's a part of the problem with ALS. That whole "dramatic pause" thing, the word formation issue, could easily be seen as a normal part of speech. I just noticed a subtle difference in the way it happened.

Then I began to slur just the tiniest bit. I cover it up well; my diction has always been excellent. Once again, I am starting at a higher level of muscle control, so the loss looks like "normal" speech. It's not. Some letter combinations were harder than others, some words less likely to come out on the first attempt. I also noticed that the left side of my mouth constantly felt like it was "sloping", as if I had had a stroke. It's not really visible; it just feels that way. You can't see it; I can feel it.

Finally, of late, the truly obvious stuff is coming along. You can see when I chew on my cheek or bite my tongue while eating. It's visible. You will probably begin to notice that I am not as clear in my speech as I once was. It's visible. You might even notice me grimace in pain as the muscles in my tongue cramp up. It's visible.

I slowly losing my speech. It will happen. One day I will be unintelligible, slurring my words, struggling with word formation. It will happen slowly, the changes almost invisible, except to me. Then one day you will ask me to repeat myself; you will not have understood what I was saying. Then, one day further along, you will begin to interpret what I say, seeking the words in the midst of the slurring. Then, one day, I will just stop talking altogether. Make your jokes now; it will be far too painful then.

Grandpa Day

Yesterday was a "Grandpa Day". I get them very rarely; most times when I see my grandchildren there are parents and family all round. It isn't often that I can devote a whole day to spending it with just the children and their Mom or Dad. Not two parents, mind you; just one, where I get to be the other parent, or grandparent as it were. Yesterday Mary, Rose, Quinn and I spent most of the day, or at least my version of a day, together.

I picked them up at home at around noon. From their place we drove up Vancouver Island for a couple of hours to a place called Coombs. It's a small village with an old general store, famous for one thing only; there are goats on the roof of the store. Many years ago the owners let the goats graze on the moss and grass that grew on the cedar shaked roof. The store became an attraction; people though goats on the roof was interesting. It grew from there into a larger store, an ice cream stand, other shops, then a whole other bunch of shops next door. The goats remain the attraction; everything else goes along for the ride, although I think much of it has a life of its own now.

The goats didn't show yesterday; they were taking a break. Ultimately we found them in their pen in the back yard. In the interim we shopped, had ice cream, played and chatted. Mary is great with the kids; I had very little "parenting" to do and spent much of my time wondering and watching. Rose is a terrific little girl, kind and helpful. There were a number of times yesterday when she helped push my wheelchair, and I mean really helped, as I headed up slopes or just looked tired. She's strong. On top of helping me, she is attentive to Quinn when he needs it, and listens to her Mom when asked to behave or do something. I'm not saying she's perfect, but she's a great little kid.

Quinn is only a year old, but already you can see his personality, full of laughter, smiles and mischief. While he had the fussy time that all babies have, even his cry is soft; none of that shrieking which drives so many of us crazy. The rest of the time he smiles and laughs. Really, he does. Every time I would look at him he had a smile on his face and laughter in his eyes. I'm not saying he's perfect, but he's a great little kid.

The most wonderful thing about yesterday was just spending time with Mary and the kids together. I got to watch them, got to see the next generation. I won't likely see them go off to school, or graduate, or marry, or have kids of their own. I can imagine it, see it in my mind's eye, and that will have to do. I can see who they are, and wish for all that they can be. That's enough. A day with all of them was the best day possible, a memory day.

Changes Over Time

Sometimes all it takes is a bit of time between visits to a given location to realize that ALS has progressed. You get to see what you could do last time, versus what you can do this time. If the span of time is sufficient, the changes will be just enough to make you go "oh crap", but, with any luck, not enough to stop you in your tracks.

Right now I am in Victoria, at the Harbour Towers Hotel, in Room 415. This is the third, or perhaps fourth, time I have stayed in this room; once on a road trip with Mike, once on a solo visit to see Mary, Albert and the kids, once on a road trip with David, and now again on a solo visit to see Mary and family. The last time I was here was in August of last year, the 28th to be exact. David and I shared this room, and Dion crashed in with us for a night.

Last year I was just fine in the room. I didn't need the M-rail. The carpet on the floors was relatively easy, the shower was just fine. This year the story is a bit different. When I first got into the room, I looked at the bed and thought to myself "No problem." After all, I did it just last August. Then, when it came time to get into bed, I was faced with the sobering reality that I could not make the lift. I ended up calling one of the hotel staff to ask if he could get my M-rail. Once the rail was in place, I made it into bed, with only some slight problems.

Then there is the roll in shower. It's a small shower, about 3 foot square, with a seat, a wand, and a shower head. The control switch for the wand/shower head is up on the shower head itself. Fortunately I can still reach it. On the other hand the positioning in this small shower area along with t the transfer to the bench represented a significant challenge today. I did it; I don't want to do it again.

These changes, along with a couple of others, demonstrate clearly to me that, in spite of "looking great", my ALS is progressing. I am getting weaker. Things are becoming more difficult. That's just the way it is. I'm not angry about it. These changes are expected; ALS is a progressive disease. All I need to do is be sure I have the tools and help in order to keep going. I can do that.

Off To Victoria

I'm sitting in the food service area at the Tsawwassen BC Ferries terminal, waiting for the 3:00 PM ferry. There are people wandering around, sitting at tables, having coffee, chattering. The couple at the table next to me has a newborn baby, perhaps a week or two old. They are Chinese; their baby has an absolutely full mat of thick black hair. At the table next to the, a group of young students are playing cards, chattering away in a language I don't understand, most probably Chinese given their ethnic makeup and the sounds they are making. Across from me, a young man is studying on his computer; he's told me he is taking Forestry Science at UBC.

I hadn't planned on being here today. This was supposed to happen tomorrow. My plan had been to take it easy for a day in Vancouver, visit with my Mom and Ray, rest up for the next jaunt. Unfortunately my daughter, Mary, has some conflicts in her schedule, so I made the decision to head over today instead. With only a few minutes warning, I grabbed my suitcase and computer bag, headed for the truck, and drove to the ferry terminal.

It's one of the really great things about my life on the road. No plan is sacrosanct; things can change. I don't have to be anywhere at any given time. I don't want to get home before the elevator is done. I don't want to stay away from home any more than I have to, not one day too long. So, while I have a road trip plan, with the concomitant spreadsheet, I've decided not to pay too much attention to it. I've decided, instead, to go with the flow, take it as it comes, and enjoy the voyage just as much as I enjoy the destinations.

It's kind of like that with my ALS too. The further down this road I go, them more I come to realize that the voyage is still important in spite of the distractions along the way. Change happens; it is the only constant. No plan works, at least not past the moment. Just as the wind brings the weather, the weather brings the wind. All I have to do is catch some in my sails, travel where it takes me, and enjoy both the ride and the destination, whatever it may be.

I come more and more to realize how fortunate I am; I am a lucky man. I have a good life, a wonderful life. It is not free from distractions, nor is it particularly easy. It is rewarding, fulfilling, exciting, interesting. Yes, it will end, perhaps sooner than I would like. But who among us knows the number of his days? I'm working hard to keep going. My reward is that I get to keep going, to live. That's my only real plan.

Hillcrest Inn

Have you ever gotten so comfortable, so at ease in a hotel that you really didn't want to leave? Of course you have; most of us have. The last place that had this effect on me was the Villa Campestri, the jewel outside of Florence which Cheryl found for us last year. This time, it's the Hillcrest Inn here in Revelstoke. I like it here; I want to stay.

Yesterday was an exploration up the Columbia valley, or more aptly, the Columbia canyon, the walls of the mountains rising so steeply that it's possible to have two major hydro-electric stations within 100 miles of each other, that whole 100 miles being consumed by Lake Revelstoke, the hold back behind the Revelstoke Dam. I drove the lakeside, all the way to the Mica Dam, checking out the terrain and the wildlife. The terrain, with its sharply rising rock faces and thousand little waterfalls, was enchanting. The wildlife consisted of one moose and one deer.

Today the skies have turned cloudy, the quilt of ready moisture hanging against the mountain peaks, trying to decided if it will be rain or snow. Even with the spring warmth here in the valley, new snow on the upper mountain slopes would not be a surprise. A few flakes might even make it down here, down in the valley. The first of the rain arrived last night in a torrent worthy of Biblical comparison. It passed quickly however, with the mist hanging round for today. All the world is wet.

In spite of my overwhelming desire to sit here, stare at the mountains, drink coffee, or beer, or wine depending on the time of day and the company at hand, I must off to Vancouver go. I have learned a couple of things from this sojourn here, however. First of all, I wish I had come to this hotel so many years ago, and kept coming regardless of cost. This is a treasure for me; I will be back.

The reason it is a treasure is more than location, although that would have been good enough in years gone by to convince me to return. No, it's more than that, more than the incredibly kind and friendly staff and management, more than the ample supply of local beers on tap. This hotel is accessible, almost completely accessible. In only one or perhaps two areas did it not truly meet my needs as a wheelchair traveler. Norm, the GM here, assures me they are working on fixing these minor failings in the next renovations.

There are automatic doors at the front, a low counter for the front desk should I need it, a ramp to the lounge and sitting area, level entries to the bar and restaurant. My room, though on the small side, had a gigantic bathroom, bars for the toilet, a lowered sink and counter, and plenty of towels. The only drawback was the bathtub, a situation Norm assures me will be resolved with the renovations currently underway.

Most of all, it's the setting, the calm beauty of the mountains outside the window where I sit, the smell of the fresh air, the sound of birds and all nature combined, the feeling that time is easy, that there is plenty of space to relax, that I don't have to hurry. That's what I really like here.

To Mica Dam, I Hope

The pain in my shoulder is back. It is now a certainty that this pain is driving related. I don't know how or why it happens, but a day of road tripping is enough to cause it to flare up something fierce. I've already taken a couple Tylenol and I expect more will be needed later in the day. It looks like this situation will remain, a kind of constant companion when I take road trips. It's just another thing in my life.

Speaking of road trips, this one did not work out as planned yesterday. It doesn't mean it didn't work out well. The Meadows In The Sky Parkway is closed until June; too much snow in the high country. It's been an interesting winter here in Revelstoke, or so the locals tell me, with plenty of snow up on the mountains but almost no snow down here in the valley or on the lower slopes. There's still a lot out there, way up on the mountain peaks.

My options were open yesterday, so I took a short drive around Revelstoke, explored the surrounding countryside, even going up to the Revelstoke Dam. I explored the downtown of this evolving mountain town, drove down the riverside until the road ended, then wandered up the snowless lower slopes of Mount Revelstoke, the ski hill now closed for the season. Then I watched the Flames lose to the Anaheim Ducks for a second straight game. Oh, there was beer too, along with the excitement and smell of a young boy vomiting all over the floor. All in all, a fun night.

Today is a late start; I was in bed until 11:30 AM. I didn't have a bad night last night, nor a particularly difficult day yesterday. It's just one of those days, the days where nothing works quickly or easily, where arising is difficult, dressing is a challenge, and getting mobile seems the last thing I want to do. Nonetheless, I did it. I will soon take off on an exploratory drive up BC's highway 23, a minor highway split in the middle by Revelstoke. It starts down at Galena Bay, moves north to Mica, and, before the dam went in, used to come all the way round back down to Golden.

You can still make the whole of the Big Bend if you don't mind logging roads. In fact this stretch was actually part of Highway 1 before Rogers Pass opened up in 1962, although the portion from Mica Creek to Golden was a dirt road. Most of that part, the dirt part, is long gone. The rough roads cut by the BC Forestry Service and various logging companies are the only way through.

I hope to make it to Mica Dam today. I say hope because my arm and my body in general are tired and worn. If it gets to be too much, I'll turn around. I can come with friends and do it again in July, when I come back to see the Meadows In The Sky.

Meadows In The Sky

I'm at the Hillcrest Lodge, a hotel I have long wanted to visit, set high on the hillside overlooking the Columbia River valley at Revelstoke. This high mountain town, set at the junction of the Columbia and Illicillaweat Rivers began its life as a mining town, evolved into a rail yard town, and further evolved, becoming a winter and summer recreational tourist town.

I write this blog entry while sitting in the lounge, enjoying a fresh cup of coffee, looking out over the high peaks of the eastern Monashee Mountains. The hotel is on the east side of the river, set against the backdrop of the rugged Selkirk range. All of these are part of the Columbia Range of mountains, a sub-range of the Rockies, that great spine that divides North America, and particularly Alberta and BC.

This is a solo trip, of necessity. Katherine has to go back to work. I am once again a lone traveler on my voyage through the remaining days of my life. It seems I am destined thus, defined by my need to keep moving, either forced by circumstance, or driven by will. I miss her already, only one day out from Calgary. I miss her silly moods, her giant hugs and smiles, her willing helpfulness. I can travel alone; I know this. I don't like to travel alone; I know this too.

This road trip is different. For all of my life so far, Revelstoke has been a stop of necessity, either driven by failed or blocked roads, or demanded by exhaustion. Most times I grab a coffee at Timmies and push on through, making time and distance, headed for the coast. This time, however, I am stopping here for a couple of days, staying in a hotel I have long wanted to try out, exploring roads and sites that have intrigued me aplenty as I passed the road signs of their designated turn offs. I have never turned before; this road trip I will turn.

Today I plan on driving up the Meadows In The Sky Parkway. The name alone is enough to call me, to explore. It is a roadway up the steep slopes of Mount Revelstoke, winding through 16 switchbacks to make 26 kilometers along a road cut into the deep mountain forests, upwards 1000 meters in elevation to the alpine meadows above. That should be enough exploring for today.

I Lost My Legs This Morning

I forgot where my feet were this morning; I lost them for a bit. That sounds odd, but not as odd as ALS makes it. You see, what really happened is that I thought my legs and feet were in one position, then looked down and realized they weren't where I thought they were at all.

This kind of thing happens to me a fair bit, that I forget about my leg positioning. It's a function of being paralysed. When I lay down on my back, my legs are down there somewhere, usually in a slight V-shaped position beneath my waist. That's how they seem to naturally end up. I can look down at them, seeing my feet bent forward in toe drop that happens even when I am horizontal. I just can't move them.

Most of us move our limbs automatically, without active thought. Our reflexive reactions say "Legs! Go there!"; and away they go, without purposeful focus on our part. Not so with ALS; not so with paralysis. I look down at my legs and say move, but they stay where they are. I try to force the issue, yet there they remain, immobile. There is no automatic movement.

On the other hand, now and again my brain forgets that my legs no longer take instruction. My brain forgets that simply sending a thought no longer results in a concomitant action, that wishing it doesn't make it so. In my brain, my legs have moved. On the bed, they remain immobile. So I think my legs and feet are in one position, only to look down and realize they aren't where I think they should be. I lose them for a moment.

This morning's loss was momentary, as they all are. My brain thought my knees were bent. My brain thought my legs were crooked up a bit sideways, with my feet resting at an angle. My brain was wrong; it sent the instructions but they were not received. Instead, once I looked down for them, there they were, straight as ever, in a slightly V-shaped position, with my toes drooping as usual. That's how I found them.

May Is ALS Awareness Month In The USA

Hooray, hooray! It's the first of May. Outside screwing starts today!

I learned that rude bit of doggerel from my favourite aunt, many years ago when both of us were much younger. While the verse may be a bit naughty, the sentiment is one the mark. For most of us in Canada, May represents the unofficial end of winter. May, and the Stanley Cup playoffs. May is when picnics can take place without fear of snow, mostly. May is when canoeing and hiking in the woods can happen in above freezing temperatures, mostly. May is when the rain eases off and the sun starts to take hold of the ground around us, mostly. May is when the ice is off the lake and the boat goes back in the water, mostly. May is mostly a good month.

For me, May has come to mean something else altogether of late. It is ALS Awareness Month in the US, and June is ALS Awareness Month here in Canada. My life has changed dramatically because of ALS, a disease I had only a vague awareness of before it became my constant companion. I am aware of ALS every moment of every day of every month of the year. Yet, like myself, there are a great many people out there who have no idea what this disease is, or what it does. The are simply unaware, just as I was.

The idea of a whole month dedicated to ALS Awareness is a start. But we need more than that. The problem is, of course, that there are a great many other causes which need our attention, not just ALS, not just my particular disease. The only real defense I have in wanting even more awareness for ALS is that it is a "neuro" disease, a disease associated with nerve and brain cells. This class of illness, a group which includes things like Alzheimer, Parkinson's, MS, and a host of other lesser known candidates, is rapidly taking over as we battle back the tide of cancer and heart disease. Neuro diseases are rapidly becoming a forefront illness, a set of diseases which all share a common basis, and about which we know so little.

We will never defeat cancer or heart disease completely, or at least I don't think we will. We might in some science fiction future, but with our current technology and medications, cancer and heart disease are with us for a while to come. But we know a whole lot more about them than we do about neuro diseases. We study them a lot more. We invest in them a lot more.

I m not asking for equal time. We need to be practical about this. At the same time we need to understand that more and more of us will die from neurological disorders as we get better at treating cancer and heart disease. It's simply time for us to be more aware of things like ALS, not just for one month, but for the whole year.