Death, Life, And The In Between

My friend Dianne's Dad passed away yesterday. She and Chris are here this week, in anticipation of this happening. Today is their day of dealing with estate, lawyers, funeral arrangements and all of the little things that go with the legal side of dying. It reminds me of the line, "I you like someone, remember them in your will. If you dislike someone, make them the executor."

Of course the passing of Dianne's Dad has triggered a lot of thought in my when it comes to my own demise. I want things kept very simple. Peter, my brother, as executor of my estate, has the full power to do whatever he thinks best. I trust him. Since there will be little or no money left, a funeral, especially an expensive funeral, is out of the question. That is in line with my wishes, so it's a good thing. What I really want is for my friends and family to gather at my apartment, drink all my wine and liquor, empty out my freezer, fridge, and pantry, and throw a hell of a party. My children should have first choice of any of my possessions, although there is not much.

I find it interesting how varying people react to death. As you would expect, family members go through the greiving process. Then again there are situations like mine, where greiving is almost an ongoing process. For others, there are two questions they ask almost without fail. "How did he die?" "How old was he?"

The "How did he die?" question is more of curiousity than any need to do some sort of emotional autopsy. The more interesting thing is the need for people to know how old someone was when they died. It's important. It helps us put a death in perspective. If someone dies at 91, that makes sense to us. We all want to live that long. When someone makes it that far, it encourage us, reminds us that we have that chance too.

Then there are those who die "young", giving us pause to wonder about our own longevity. This is such a relative term. There are very active people who die in their 70's, and that seems young, especially when life expectancy in Canada is 82. I will likely die at age 62 or, if things go very well next year, 63. In today's world, that is young, young enough that I won't make it to pensionable age. It is these deaths, the abnormal ones, the ones which fall outside of our expectations which give us pause, causing us to remember that life is fragile, that life can be lost at any time.

Death comes to all of us. Our lives are limited. It is the way of things, be it early or late. The best any of us can do is hope for a peaceful, painless passing after a long and productive life. Yet we have no control over this. Fate is inexorable. It weaves a path for us, and then we die. This is life.

I Feel Good

I feel good this morning. I won't go as far as to say I feel better. My tummy, while getting better, is still sensitive.My bowels still feel moderately explosive.  My left leg was particularly stiff this morning. And I still have good old ALS to make my day. Yet with all of that, I'm doing all right.

Part of this is that Chris and Dianne are visiting me. Having such good house guests, and a friend who has known me forever, certainly makes life lighter. And of course Monday is sandwich day and Kathy did well in making them for me. I got a good night's sleep without taking a cookie or sleeping pill. I managed to go all night without soiling myself or my bed.

One of the great things about Monday sandwiches is that Kathy uses a lot of meat and cheese in them. It means my Monday's start with a real protien boost. Home Care has a limitation on food preparation. They are supposed to make a light breakfast, meaning toast or cereal, perhaps a coffee. There is such a low nutritional value in that kind of breakfast that I might as well just stick with coffee alone. Yet that lack of substance along with the absence of protein leaves me without energy, sluggish, unable to build enthusiasm for anything.

These days, as I contend constantly with the exhaustion of ALS, having moments like this, where I feel good, thanks to food, company and good care, are the simple high points of my day, and week. This disease is unremitting. So feeling good is a wonderful thing, not just a break from the strain of living with ALS. It's like a ray of warm sunshine on a chilly day here in Calgary. It happens often enough, yet it seems so special in that moment when it does happen.

Life is getting increasingly difficult for me. But with the care, compassion and help I get from Home Care, from friends, from family, all of it makes a difficul situation so much more livable. And I feel good.

There Is No Fairness

I hate this being sick while being sick. I am still struggling with a sore belly, although it is getting incrementally better with each passing day. Last nigh, as my Home Care Aide put me to bed, things came to a kind of head, with my rear end releasing all the pains of the days rather suddenly. Alas, there was not enough time to get me back into the sling. In fact even the attempt sped things along, making a difficult situation even messier. In the end, if you willf forgive the pun, she just cleaned me up.

Today I am still dealing with lower end discomfort. I am feeling better, just not good. I suspect a few more days and whatever it is attacking me from within will have passed, leaving me once again to deal with the simple challenges of ALS. But you never know. My body is slowly failing me. I have no idea what will happen next.

One of the most frustrating things with ALS is the way it imitates and hides other things. Weakness from a stomach ailment could just as well be weakness from ALS. Lack of appetite from some other illness could just as easily be lack of appetite from ALS.. Exhaustion from battling some infection or other merely blends into the perpetual exhaustion of ALS.

I would like to say it's not fair, except that there is no "fair". Fair is a human emotional construct. The human body, daily existence, life in general, these things know nothing of fairness. Life just fulfills its random function, carrying on in spite of how you think it should be. I think there's a lot of unhappiness where people expect life to be the way they want it without realizing that it won't conform to their wants or need for fairness.

I could be very unhappy with this perception of unfairness. I could wail and complain about how my life has been wrecked or how my body has failed me. There is no point. What I do instead is accept that this is how I will be today. Tomorrow will be different. Nobody knows how; all that is random.

For now, however, I would be very happy if my tummy would get better and my energy level would build up a bit. We'll have to see. There are no guarantees.

More Tummy Troubles

I have been fighting tummy trouble for what seems like a few weeks. It may be shorter, as somewhere in the process I got that bladder infection and ended up in hospital for five days. Nonetheless, I was having digestive problems before, and I am having them once again. My tummy hurts.

Last night, after I went to bed, it got really bad, to the point of me having to vomit. I tried, I really tried. Unfortunately my bodily resistance to heaving out my innards would not allow the process to complete. So I just lay there, by belly hurting, feeling like I was going to puke. This has continued on to this morning. My tummy still hurts. I still have this vague, background feeling of need to throw up whatever contents lie within me. Worse, I was constipated this morning too.

In other words, I feel shitty. Oh so shitty.

Having to vomit last night was interesting from a muscle force perspective. Those involuntary muscles within me, and even the voluntary muscles which are nearly dead, can still constrict with a powerful force. The distress from the heaves was substantial, leaving me sweating and exhausted, awaiting the next bout. For muscles which can no longer hold me up straight, they do a hell of a job producing the power for projectile vomiting.

Yet even so, they failed. I have been unable to empty the contents of my stomach, either one way or the other. So here I sit, feeling sick to my stomach and completely uncomfortable. I tried eating a bit of bread this morning, tried drinking some water, even a bit of coffee. The end result was that the desire to puke returned full force, even though the actions did not merit the feelings.

I am not sure how long this will last. Being sick while having ALS is even more of a challenge than you might think. Even the quick trips to the toilet are too much, let alone the increased tiredness and exhaustion. It's been going on for a while. I hope it ends soon.

Rest It All

My arms are feeling particularly weak today. I found myself nearly unable to wash my hair in the shower, struggling to lift my arms and hands up above my head. Right now, as I type, I am resting my arms on the armrests of my wheelchair, unwilling to make the non-trivial effort to lift them onto the table, or anywhere else for that matter.

I know why today is a bad arm day. Yesterday I was very busy. I started a new batch of wine, something which requires handling wine concentrate, squeezing skins and seeds into a cheesecloth then putting it in the wine, stirring, pushing the primary fermenter under the shelves where it lives while fermenting. All of this wore out my arms, along with the normal challenges of ALS. In addition to the wine, I did part of my laundry yesterday. I say "part" because my HCA, Sam, got it started for me, even getting it into the dryer. However I had to finish it, checking on it a couple of times, unloading the dryer, hauling it down the hallway into my apartment.

All of the things I did yesterday impacted my arms. Given that it can take days for me to recover from a high level of exertion, it's no surprise that my arms remain exhausted today. The weakness extends from my very fingertips as I write, all the way up into my shoulder muscles. I can even feel the weakness in the muscle remnants of my core body, and even into my thighs, muscles long ago dead.

I suppose the most distressing part of this weakness is its visibility. I can see the atrophy in my arms. I can see the loose skin where muscles used to stretch. I feel the weakness as I try to pick up even something as light as a cup of coffee. I don't know how much longer this is going to go on. It saddens me to watch it, to see myself slide like this.

Today should be a take it easy day for me, except that I have laundry to fold and fruit to slice. I should check the mail too, something I haven't done since Monday. Or maybe not. I can ask someone else to check my mail. I can leave the folding until tomorrow, when someone from Home Care will fold it Really, what I need to do is rest; arms, body, mind, all of it.

Stubborn

There is a stubbornness wirhin me. Not an unwillingness to accept reality, but instead an unwillingness to accept the permanence of a situation where change is possible. Consider my wheelchair situation. I have made the decision to use the PWC as my principal wheelchair. This, however, does not mean I am compelled to use it all the time. Today is a good example.

It's an at home day today; I have no plans to go anywhere or do anything. Of course there are a million little things around the apartment I want to do, some of them within my capacity, others not so much. I want to go through my cupboards and tidy them up, organizing things as needed. That, however, is a bridge too far. On the other hand I plan on starting a new batch of wine today. My Home Care Aide, Sam, put the wine kit on my shower bench. I can do the rest of it from there. I'm going to fight hard to keep doing the things I can, like starting a wine kit, all the while recognizing that some things are just beyond my abilities these days.

Last night was another good example of my resistance to change, my unwillingness to give in to what some might percieve as an essential reality. For the first time ever, Home Care came to put me to bed at night. Olga arrived here at 9:00 PM. By 9:30 I was tucked in and ready for sleep. Except sleep did not come quickly. Like a small child, you might be able to put me to bed, but you can't force me to sleep. Eventually I did, and I slept well, especially with the blankets finally covering my toes, something I have been unable to achieve in a very long time.

I resisted Evening Care for the longest time. I like to stay up late. I like to have a few drinks. I like to have company over. So how could I possibly have someone come and put me to bed so early in the evening. The answer is simple. Resist for as long as possible, and when it is no longer possible, resist some more. When you finally cave in, make the concession partial at best.

The deal is that they come in and take off my compression socks, a real task for me. Then they change me out of day clothes and into evening clothes, sleeping clothes. They prepare the bed for me and make sure I have taken my evning pills. From there, it's up to me. I can stay up, on my own. I can stay up, with company. Or I can just go to bed, like I did last night. That's the resistance part. I do what I want; they help me.

So yes, I guess I can be stubborn. I try to think of it as determined. Determined to live my own life as long as possible. Determined to take care of myself as long as possible. Determined to keep going. Determined to live.

Why?

Why?

It is the single, arguably most powerful, question in the human vocabulary. It is a single word, resting perpetually on the fringe of my mind's eye, ready to leap into action, ready without prompting to spring from merely a word to a powerful quest for answers, often answers we are unable to achieve.

Why?

There are so many things I do not know or understand. I want to know why. Why did I get ALS? Better yet, why does a beautiful, young, otherwise healthy 23 year old get ALS and die within a matter of months, while I live on? Why does a 19 year old boy here in Calgary, or an 8 year old boy in Los Angeles, get ALS, progressing to the point where they depend on breathing apparatus and feeding tubes, while I chow down on a steak for dinner?

Of course there is the more existential question of why. Why am I here at all? Other than mere biology, my sense of humanity says there must be a reason. Yet there is none that I can as yet uncover. Why am I me, this person and personality? Surely we should, by now, be able to uncover that balance of nature and nuture which forms each of us, and yet we can not. We don't know why.

There are so many things that leave us grasping in the ether, that ethereal space of our conciousness, between awareness and blackness. Why do flowers grow up while roots grow down? How do they know what to do? Why do we strive, competing for love and affection when the battlefield of human relations is strewn with the casualties of our emotional war? Why do we keep going, why do I keep going, when all logic and reason tell me there is no point to it all? I don't know; I just do.

It's easy to see why humankind has turned, and still turns, to dieties of all sorts to explain the things we don't understand, to answer the unaswerable why. We, as a species, constantly seek answers and explanations. We are animals of cause and effect, curious always. We are forever allowing that word to come out from the shadows, to dominate the light of our thoughts, driving us to exploration, experimentation, examination. We all want to know why.

For myself, I have reached a place where I am comfortable, mostly, with the simple idea that I don't know why, that I will likely be unable to ever answer that ponderousity, that elephant in the living room. I don't know why, and I am okay with that. I just am. It just is. Maybe one day we will know why, but for me, for now, for today, I can live without an immediate answer.

Peace, internal and steady, comes from acceptance that you may not know why, that it doesn't really matter if you do or don't. Let your curiousity drive you to search for answers. Let your heart be still when you realize you may not find one. Push to learn, to constantly find out why. And when you are done, live in the grace that you have learned what you can, and accepted that you cannot know it all.

Evening Care

Well, it's happened. I knew it would happen. It had to happen. It's just a part of losing control over the muscles of my body. As of Monday, Home Care will be in at 9:30 PM each night to put me to bed. That means taking off my compression socks, removing catheters or diapers, getting me out of whatever pants I might be wearing, putting me into evening wear of some sort, and putting me into bed.

That last bit, putting me into bed, is optional. Certainly I don't want to go to bed in the middle of a party. Some nights, if I am out, I won't even be home by 9:30 PM, so those nights I will havre to ask someone else to help with my socks, or I will have to sleep with them on. Regardless, I am at a place where both dressing and undressing have become problematic. Such is life with ALS.

My hope is that this new level of support does not predicate a new limitation on my life. It is my hope that evening care will be focused on getting me ready for bed, or at least out of my daily vestments and into evening wear. This can happen no matter who is visiting. When I am home alone, my hope is that this change in care will provide the impetus for me to go to bed earlier, to get more sleep. It seems that 12 hours is not enough these days. I am tipping over to where I sleep more than I am awake.

The next step? I don't know after this. When the time comes where I can no longer use my arms or hands at all, that will be bad. That will mark the final end of my independence. Once I can no longer eat or drink on my own, that will mean a level of care which cannot be provided in my home. I am not looking forward to that day. I wasn't looking forward to this one either. There is, and was, nothing I can do to stop these changes. My job is to decide what to do once they arrive. For this one, I will take it as helpful. I'll let you know how it goes starting next Monday.

Costco Run

I just got back from a Costco run. I wanted a few things which I like to get there, things like Parmesan Cheese Petals, kitchen garbage bags, and some Baby Belle Cheeses. I can get some of these things at Safeway, but the price and size is better at Costco. I seem to go through a lot of Parmesan Cheese. I like to take advantage of a Costco run to look for a few special things too, things I rwally enjoy but are far to pricey in other stores. For example, I love lamb, either rack of lamb or roast lamb. Costco consistently has lamb at excellent prices. Were I to have to purchase it at Safeway or Coop, the price would be almost 50%, and it would be right off of my shopping list.

Doing a Costco run is not all that hard these days, even without my truck. In fact in some ways it is much easier than with the truck. I make the trip by bus, in my power wheelchair. For some reason the bus drivers consistently wave me off when I try to pay my bus fare. I don't know why, but they do. Staging in the chair and going by bus means I have no transfers to make, and I don't have to wheel myself about the store. Given that I have decided to stay in my PWC as my primary chair, I am ready to go without a lot of thought.

The bus leaves from the front of my condo, either directly out my front door or from the stop directly across the street. So I can time my departure to allow for minimum wait. The bus ride requires one transfer at the Dalhousie C-Train station. What's really nice is that in the warm weather it's close enough I can skip that bus and just take my PWC all the way to the station, a ride that take about a half hour. Most nice days it is one of the best ways to get myself outside.

Comimg home is almost the same story. If I manage to keep my shopping to what is on my list, it's usually not a lot. However, like my rides there and back, that bus has already left the station. I almost always end up with more than planned. It's the same with virtually all my grocery shopping. Today the extras include Olives for Greek Salads, a tub of Potato Salad, and some Chocolate Covered Almonds. Still, it's a small amount which can easily fit on a box on my lap, so I just take the bus home, the reverse of my trip there.

On the other hand there are days when I just need stuff that comes in large packages, paper products for example. I don't like to run out of paper towels or toilet paper. Yes, I know. If I run out, Safeway is just across the street. I just like having lots on hand, and Costco is the place when you feel like that. So when size happens, that's when I take full advantage of the Access Calgary Extra service, where I can call a cab but pay the prices of bus fair. Usually, after tip, my part of the fair comes to about $6.00. Yet I make few runs like that. Mostly it's smaller stuff.

There are times when a friend will take me. That means making the transfers into the truck if I want to use it, or a transfer into someone else's car. It means wheeling myself around. But it also means I can make those larger purchases without even needing a cab. Sometimes its worth it.

My reward for all this work? I Costco HotDog and an Iced Tea. That's probably the most important reason for me to do a Costco run, the real payoff.

I Wish I Was Better

When you live with ALS, there are watershed days, those seminal days where you realize something significant has changed in your life and abilities. When I could no longer stand on my own and had to commit to a wheelchair, that was one of those days. When I no longer had the energy or focus to work at my job, that was one of those days. There have been many others; they are coming thick and fast now.

Today is another one, one of many recently. Over the last few months I have seen my ability to drive wither away. I have lost the strength needed to put things up on shelves or down on the floor. I can no longer lift a wine kit or carboy. Many of these are just passages; some stand out as significant, like today. This is the day when, on balance, I start to use my power wheelchair more than my manual wheelchair, even here in my apartment.

This morning, I asked Olga to help me get directly into the PWC. I meant one less transfer, sling and all. I don't know if I will even use my manual chair today. Of late I have been finding it much simpler to stay in the power chair, rather than transfer to the manual chair. It handles the lumps and bumps here at home jsut fine. If I want to dash across the street to the mall, I am already in the chair. It goes over the carpet in the spare bedroom as it it wasn't there. It's just easier for me.

It is a principal theme for me these days, minimizing the effort in all things, even though doing a task the easy way may not be the way I want it done. I have to focus on getting the most out of my day. Not pushing myself around my apartment is one step, another of many, in that process. It just makes sense, even if it is concession to another loss, theft of another ability by ALS.

I don't feel all bad about this change, this watershed moment, this new reality. My PWC is a powerful tool, lent to me by the ALS Society of Alberta. Without it, I would be condemned to stay in my apartment all the time, never venturing out of doos, never doing my own shopping.Without it there would be no Costco run, no dashing up to Walmart or Coop, no heading out on my own via C-Train. The change to the PWC is both a win and a loss, a plus side change for conserving my energy, a minus side change as I recognize another crucial failure of my arm muscles.

I appreciate the Society. They have been good to me. I appreciate the freedom of my PWC. I appreciate the way it makes my life easier. I just wish I didn\t have ALS, didn't have to go through this change. I just wish I was better.

MAID Form Completed

I am home, and once agan I am back into the busy social life. I love my life, my friends, the things I can still do. I am tremendously grateful for thier generosity and the generosity of so many who have donated to my blog, and who have supported me for so long. It's at this moment I realize how long it has really been, with 1,768 blog posts.

It's been getting increasingly difficult for me, of late, to be consistent with writing blog posts. Part of it has been exhaustion, part has been ill health, part has been those down moments or days when I just have nothing good to say, about life or living. And as Mrs. Rabbit, think Bambi, not Jessica, said to Thumper, "If you can't say something nice, don't say anything at all." Some days are best left unsaid.

David did a terrific job in the blog updates he posted for me. He, along with a few others, has seen me through this from the beginning. In fact today he and Liz were here with me to sign the MAID papers, my application for Medical Assistance In Dying. We've taken to referring to it as my death warrant. The document is signed and I will deliver it to the appropriate health care professional sometime in the next few days. Then the process really gets rolling.

It was interesting to watch us today. Tonny was here making breakfast while Liz, DAvid, and I quibbled about how we should fill in the form. whether to use full names or our conversational names, what dates to use, where to sign. As with all things government, it's a long form, a full three pages, with plenty of places for initials and signatures.

Our chatter was not morose. Humour abounds within our group. We laughed about the fuss we were making, about referring to it as a death warrant, about what other information I should leave accessible and for whom. Liz has this deadpan delivery with some of her lines that I am never sure if she is trying to make a joke or if things just come out that way. She certainly makes me, and others, laugh. David, as many of you have read, has is own sense of humour, bitingly funny and often obscure. Tonny finds humour in so much, just as the rest of us do. We did the paperwork, ate our lunch, did some winemaking chores. It's a normal day here on the farm.

I don't think this kind of decision is a sad on. Something is going to take me, be it respiratory failure, choking on my own phlegm, or a good, old fashioned stroke. This document is simply a gateway to manage my life if other things don't beat me to it. My "death warrant" as signed, sealed, and delivered nearly five years ago, in a cold, sterile hospital room, when Liz, David, and I heard those three dreaded letters uttered by the neurologist. ALS is my death warrant; everything else is either alternative or paperwork.

I Can Make It

I'm home.

It's a relief to be home. Illness aside, I think I lost weight in the hospital thanks to the very poor quality of the food. We like to complain about institutional food, but think about the challenge these purveyors of basic calories must face. Every meal must meet minimum health guidelines, calorie guidelines, sugar content limitations, and variety over a week or two.

Taste is a whole other problem. When you are preparing food for a couple thousand people in a cosmopolitan city like Calgary, you have tastebuds which range from bland and mild, to spicy hot Asian or South Asian cuisine. It makes sense that these commercial kitchen creations swerve towards bland. It's safer. You can always spice up, but you can never spice down. So it's rapid slide to the bottom of the savory pile.

Here at home I make my own food, the way I want. The trouble is that on a day like today, I don't really feel like cooking. Fortunately I have a large set of pre-made meals in the freezer. Today feels like soup, or pasta sauce, or maybe even leftover turkey and gravy. All of this, though, means some level of food preparation, and that's precisely what I don't feel like doing right now.

I have to go to Best Buy, to find out how much it will cost to fix my laptop, or if it will just have to be replaced. Either way I have a very limited budget. It's going to be a squeeze. Perhaps selling my truck sooner rather than later is a good idea. I can use the money. On the other hand I just got my GST rebate cheque and my Carbon Offset Rebate cheque. Along with the generosity from blog readers, I can probably works this out either way. I'm just going to have to be creative, run close to the edge.

This is not new to me. It's almost five years since I've had any income. Three of those were covered by my own savings. Another was covered thanks to good circumstance. The one year remaining was made possible by blog and other donations. I'm back to that again. It's a kind of weird, sad reality. I keep on living, even though it is a real struggle. And the longer I live, the more financial help I will need.

So for now, I'll go and find out about my laptop. Then, if I can still afford it, I might have sushi. If I can't afford it, there's lots of food here at home. I can make it.

Friends.

Hi, folks, it's David again!
Richard should be home tomorrow (Friday), but without a working laptop (we'll work on it), asked me to post again for him today.

His thoughts for today: how have others been affected by this disease?  Not other pALS, but those around the pALS - family, friends, colleagues, and even anonymous viewers of blogs & such?

Always happy to help (and having so rare the occasion to do more than just snipe at him jokingly with Facebook quips), I took on this challenge.
I said I'd take this matter seriously today, and write as myself, giving my own point of view on how ALS has affected me.
A couple of hours later, I'm not happy with that approach, so I've changed direction a bit.  Prepared to write about this next time (if there is one).  But for now...


It's funny how people fall into your lives, how they 'fit in' with you (or not), and how they become friends, or more, and what that can do to you & your life.
I organize a social club in Calgary, and was arranging for our group to gather at a weekly pub trivia night.  Week to week, different people came & went, as it was a casual, random, but regular gathering.
One day, in walks Richard - and, being himself, sort of took over the spotlight, as he tends to do.
Over several weeks, a 'core group' of people formed, partly around the trivia, but very much around Richard.
As he was in town doing project management work, coming & going to various glamourous world destinations... and Vancouver...  his social sense made his apartment the central gathering place outside of Tuesday nights downtown.
And to most of us, he became a friend.

He had been a friend for a couple of years when he received the ALS diagnosis.

I think the fact that Elizabeth & I were there in the hospital room visiting with him at the time, solidified that friendship in a way transcending the typical 'just-hanging-out' type of friends.

Some of 'the group' took unkindly to the ALS; mostly the younger folks who were now looking at a peer (if not in age or life experience, then at least in trivia interest) facing the road to the end.  Unable to handle the emotional roller-coaster that they'd normally expect to ride in another 40 or so years, they drifted away.  Friends still, but at a distance.

Soon after the diagnosis and the 'weekend of crying' (go back to posts in November 2012 for more), symptoms of the disease & the attitude about it, started becoming obvious - minor clumsiness at times; discussions about how long he had to live (initially in jest but with that pinch of reality); the chair was the kicker for me.

The chair.

The goddamned chair.

I hate that chair.

I hate seeing Richard in that chair.

I hate PUSHING Richard in that chair.

Why do "I" have to do the work if we're out & doing something together?

I hate ALS.

I hate everything about it.

I hate that a friend of mine is going to die.

I hate that a friend of mine simply won't BE HERE any more.

I hate that, now & then, I get a call asking for a favour.

I hate that I'm a 40-minute drive away, and a favour... any favour... likely means a couple of hours out of my day.

I hate that there are more favours these days than there used to be.

I hate that, when we've travelled together, I've had to manage most of the luggage.

I hate that, when we've travelled together recently, I've racked up double or triple my average FitBit points because I'm working so physically hard doing work for two.

I hate that, when we've travelled together recently, I've been half nursemaid, half chauffeur.  Where's my time off?

I hate that, when I'm working so hard pushing him around, carrying bags, running back & forth, and so on, I find I'm working just as emotionally hard keeping it together.

I hate when I think to myself, "Why am I doing this?  This is vacation time for me!  Why am I offering my leisure time to do this?  What do I get out of it?"

And then I think to myself: "Because he's a good friend, and he doesn't deserve this shit.  Nobody does."

You don't get 'time off' from friends.  If you did, they wouldn't really be friends.

A friend is there when needed.  A friend does what's needed.  A friend doesn't care what's needed.

I think to myself: "So much of what I've experienced in life the past few years, would never have happened without him.  Good times, good food, travel, laughter, more (not to mention having buckets of ice water dumped on me on several occasions).  He has changed my life, and for the better."

That's why I do this.  That's what I get out of it.

I take a deep breath, close my eyes, count to ten, and go back to whatever work I'm doing to help him enjoy himself.  When he's enjoying himself, I'm enjoying myself.

And that's what friends do.

One of those days... one more of those g*d-d&mn#d days...

How do I start today?

How about...  this ain't even me!

Someone sat on my laptop here in the hospital; it might be toast, so I've asked David to write the blog for me.  I fear for my reputation once he gets the password to the account, but we shall hope for the best.   So without further ado... h-e-e-e-e-e-e-r-r-r-r-r-e's David!!


Good evening, ladies and germs...

Richard gave me the lowdown on the story today, so I'll do my best to replicate his writing style for your reading pleasure.  I'm not sure this makes me a Guest Writer or a Ghost Writer.  With Halloween so close, I'm going with Ghost Writer.  Boo!


It's been one of those days.

I arrived here at the Foothills Hospital Monday night after some unwelcome stomach issues that didn't appear to be related to my dinner, so 911 on the speed dial was selected.  I should get a frequent-flier discount from the Ambulance Service.

Tests, checks, probes (some welcome, some not-so-much), and it's a complex infection of some kind, primarily a bladder issue, again.  Like you've not heard enough about my pee.

Tummy troubles as well - they are simply not fun, whether well, sick, ALS or not.  Yay, me...

Then someone sits on the laptop I've somehow left on a chair.  Unlikely the warranty will cover butt-crunching, so I may have to go for another one soon.  Is there a limit on creating GoFundMe pages?

But I've finally been released from General Population to a slightly more private cel... urm, room, so I have that going for me.  **Attention single ladies who might feel like snuggling: the door doesn't close, but I do have a curtain!**

Feeling somewhat better today, but still have a fever & nausea, shaking badly, and getting more sleep than usual.  Sometimes the body just needs rest, and sometimes it kicks your teeth in to get it.

So, it's been one of those days.

I am hopeful of a return to home on Friday, but we shall see...

A Cure Is What Really Matters

It's frustrating how a day of activity can wear me out so much. I didn't do a lot yesterday; coffee at the mall, a quick run up to Walmart. Yet even that low grade activity left me tired last night, and still tired this morning. I am beginning to feel like my best activity these days is simply staying in bed, sleeping. There is no doubt I can sleep a day away, perhaps even a couple of days.

I am up now, in my PWC, waiting for the wheelchair repair person to do the maintenance on my manual chair. The brakes need work. The tires need replacing as do the casters, those small wheels up front. This is something which has to be done every year, at a cost of around $300 or so. It's always amazed me that my annual wheelchair maintenance costs every bit as much as service on my truck. Then again, I don't replace the wheels on my truck every year.

AISH pays for this maintenance, one of the many services and benefits provided by the Alberta Health Services system. Without this kind of socialized health care support I would be in truly dire straits. On top of this kind of thing, AHS covers my prescriptions, glasses, dental care and a great many other things. Almost all I need is covered. It doesn't mean I get away scot free. There are still plenty of things I need which are not "medical" in nature.

It's not just the wheelchair this morning. Home Care, another funded service, was in this morning and will be in every morning until I die. This week we are going to look at adding evening visits too. This week I have also been fighting some sort of infection, eventually showing up as a bladder infection. So rather than rush to the hospital, or see a doctor unnecessarily, I took the prescription medication provided to me "just in case". In a non-profit system, doctors can treat patients without making them come in for every little thing. I didn't need the doctor; I just needed the medication.

Of course non of this will cure ALS, or even slow it down. I am progressing more rapidly these days than I have in the past. While it is good to have health care, I would rather have a cure. That would be the ultimate positive outcome. I don't see it happening for me, but our health care system helps many people stay alive longer, and one day there will be a cure. That matters.

Another Reality Check

I have arrived at a couple of difficult decision for my life, aside from the big one which has already been made. No, these decisions have more to do with how I live my life day to day, not how it will end. I have decided that I will scale back my social activities, giving up going out as much, spending more time at home, likely by myself. I have also decided to give up completely on the idea of dating or any kind of intimate relationship.

With respect to social activities outside my apartment, the biggest issue is exhaustion, followed shortly thereafter by mobility and access. I think the defining issue for any social event these days will be whether or not I can get there in my power wheelchair. This means not only to the location, but into and around the location as well.

Doing things in my manual chair outside of my home has become too tiring. This is especially true now that I am no longer driving. While I can use a heavily subsidized cab system to get to and from events, there is still the issue of the large amount of energy spent wheeling myself about while out somewhere. It's just too much. So, unless there is true access for my power wheelchair, I am going to stay away.

Of course my social life has been naturally on the decline for some time. I go out far less than I used to. I no longer go to trivia nights, something which used to be at the core of my social activities. There are a limited number of venues these days, and few of them are truly accessible. I might start going back to the Cat n Fiddle, but even that will be challenging with winter coming on. Other things, like going to parties or social events has pretty much fallen away of its own accord. I just can't do it anymore.

Then there is my "love life". It's pretty much done with. Let's face it, nobody wants to start a relationship with someone having such a short life expectancy, or whose life is so constrained by illness. Even I wouldn't do it, so how can I expect anyone else to do it? No, it's a reality. I will be alone from here on out in that respect. It doesn't mean I am completely alone. I have friends and family all round. I am going to focus on that for what remains of my life.

Days alone are tough. Mostly what I want to do when I am home alone is go to sleep. I'm not gettng out much. I don't have a lot to do here at home. So sleeping as much as I want seems to work for me. That means getting up later, writing my blog in the afternoons or evenings, and not really making meals as often. All of these are already a part of my reality, so it's not a real change. It's more of a full realization of what has happened to me, to my life. It's sad. It's upsetting. It's depressing. It's also the reality for me, living with ALS.

Another Bad Night

I am up at a normal hour, or at least normal for me. There is no reason for me to get up early in the morning. I don't have to go to work or be somewhere. So my morning doesn't usually start until about 10:30 AM when Home Care gets here. Today it started even earlier; Olga arrived at 10:09 AM, 20 minutes early. It didn't matter much. I was awake already.

Last night was tough, another one of those challenging evenings where my body simply refuses to behave. First of all, I have been having Gastro-Intestinal problems intermittently for about a week now. One day I will be fine. The next day I will be struggling with toileting, making a mess, cleaning it up. Last night I went through two sets of bed linens and ended up calling EMS at around 2:00 AM to come and help me.

I was a mess. I made a mess. There was mess everywhere, and this was the second time round. It was bad enough, then, while I was hanging in my sling, ass dripping and flailing in the wind, the EMS folks sent two female EMT's. If my embarrasment wasn't complete, this did it. I just gave up and let them help me get cleaned up and back into bed.

Today I have to deal with the aftermath, a couple of loads of laundry. My HCA did some of the cleaning in the bathroom. She was not here long enough to do laundry. The EMT's had helped with the clean up as well. It's all down to the laundry now. Nothing left but the crying.

This kind of problem is something most people get on occasion. For me the challenge is more significant. I can't just get up and run to the bathroom. The sling usually accelerates events in the most unhelpful manner. So no matter what, the outcome is fraught. Today I have taken the precaution of wearing a diaper. It's just another fact of my life with ALS. It's something I have to live with. That, and the ever increasing weakness in my arms, aggravated by the energy consumed by this issue and the effort it takes to get through it.

Aftermath

It's been a rough couple of days for me, and it's another late night blog posting. I don't have much to say, except that falling out of my wheelchair yesterday left me in bad shape this morning. Every muscle that worked, hurt. My head hurt. I was beat.

So I stayed in bed. I am only up now because of toilet demands and a bit of humger. In a few minutes I will be back in bed again. Tomorrow should be better. I hope so.

Tomorrow Is Another Day

It's 10:00 PM. I am finally getting to writing in my blog. Of course, as with so many things, I have a reason, or at least an excuse. First of all, I didn't wake up until aroun 2:00 PM, at which time I promptly went back to sleep until around 4:00 PM. I dawdled for a bit, just to get used to the idea of being awake. Then at around 5:00 PM, things started getting... interesting.

First of all, I texted my friend Anne to see if she was coming for dinner today. She replied at 5:11 PM, whereupon I confirmed her attendance at 6:00 PM for dinner, telling her that I would get up shortly. About 4 minutes later I got up, using my sling, having had placed it under during the HCA's morning visit. I slung over to the commode chair. I was getting up for the first time today, and that means other things happen. I carefully placed myself over the commode chair, then lowered myself down.

When I the chair I was a bit off centered, both front and back and sideways. I adjusted while still in the sling, meaning I was supported, unable to fall. Once settled, I removed the front sling straps from their hook. It was then that I felt a bit awkwardly seated. I wanted to move backwards a bit, so I leaned forward ever so slightly, using my commode chair handrail as a grip. Alas, it was a grip to weak. I fell.

Everything slows down for me in times like this. It all becomes slow, perpetually memorable, motion. It started out as a weak stuttered sloping forward, me grasping desparately to renew my grip on the handrail, only to realize that it was too late. The forward list was about to become a full pitchpole. My core and lower muscles, unable to move due to paralysis, did nothing but go along for the ride. On that ever faster journey, I realize, perhaps a millisecond before collision that my face was headed straight for the floor.

I paused for a moment to save the memory, strong into the firmament of my mind. Perhaps I even thought rather than reacted. Either way, my face turned right, its strongest side, and, by the way, best profile. I was not quite through the turn when my orbital bone, right where it meets the zygomatic arch, hit. My face squished downwards like an octopus head. I powered my left upper lip into the effort as well. There was a thud.

Then the room got really quite. Either that or my right ear went deaf for a few minutes, just to match the left. My face hurt, from lips to crown. There were no apparent injuries other than a fat lip getting steadily fatter on my upper left. My shoulders and arms hurt from their collective efforts, futile in the end, to soften the fall. I fell, and hit, hard. Not hard enough to break anything, other than my pride. Just hard enough to do a bit of facial bruising and fatten my upper left lip.

I lay there for about 10 minutes, sizing things up. My next thought was my phone, on the dresser above. I was down, solid. I would need help to get back up, help with sling, help with wheelchair positioning, help with emotions. So I put a towel underneath myself, sliding myself just far enough to reach my phone's power charger, a substanial effort consuming about 10 - 15 minutes. Fortunately my phone was plugged in. I pulled the cord. Down came the phone. Nothing broke. I called 911,

The ambulance crew arrived. On their arrival Excitement all round, this was their first time in attendance in my apartment. I doubt it will be the last. First they got me back into my sling from whence I transferred myself back into the commode chair. They took vital signs. You'll all be happy to know that my blood pressure is fine, my cranial bones are stable and attached, and that I don't have diabetes. Once all that was done, they ensured I got safely to the bathroom, even going so far as to help get my pants off. They left and I restarted my plan from an hour ago. No harm, no foul.

Except there was one, very real casuality of this calamity. Me. No, not me in the person sense; me in the metaperson sense. Not my pride so much, but my self-confidence. "I did this last month. Why can't I do it this month? How can I live like this? Why?" Of course there is no why. Things just are, or are not. I've got ALS. I am getting weaker by the day. I will die, soon, because of this disease. That's just the way it is.

I will recover. I always do, until that time I don't. I am going to bed shortly, well medicated. I will sleep soundly tonight. "After all, tomorrow is another day."

Over And Over And Over

Believe it or not, there are some things going on in my life with ALS that I don't share in the blog. I've been asked by some to limit my posts regarding bodily functions. Some things are just too personal for me to post here; my children read this blog. Some things are repetitive, happening all to often with ALS, like falling down or dropping things or exhaustion. You can only tell those stories so often. After a while, they become the background noise, like a political speech on TV while you eat lunch. The lunch is far more interesting, even if the political speech has a substantial long term impact.

So, all of the said....

The last few days have been really difficult for me. Not difficult because they were hard to do; difficult because they wrenched away my last bit of dignity. I've been having tummy troubles for a few days now. There have been accidents along the way. My tummy continues to rumble. It still hurts a bit. However I think the worst of it is over.

I have to be careful when I talk about "the worst of it". That really happened yesterday and last night. First of all, shitting myself is what happens at times like this. It's messy, dirty, stinky and nasty. Now add tummy troubles and diarrhea. When nature calls, I am not in a position to effectinvely respond in a timely manner. Last night, thanks to my tummy trouble, I soiled myself not once, but twice. By the way, did I mention that I had an ass like a shotgun, or perhaps the spray nozzle of a hose, during this time of great activity?

These events are nothing if not undignified. For me, it takes a long time and a lot of effort to deal with, including getting into my commode chair, removing offensive clothing, cleaning myself and my clothing afterwards. By the time I have dealt with an event like this, I am exhausted. I need to rest.

Yesterday it happened twice, within a couple of hours of each other. That wasn't even the worst event. On Tuesday morning I was laying on my bed as my HCA, Kathy, dressed me. The activity of dressing me stimulated things; I didn't even make it off the bed. That goodness Kathy was there to help clean me up. On the other hand, this was another one of many humbling things which make up my life these days. Over and over and over and over...

Winter Boots

I've written before about the extra, added costs which come along with having a substantial illness like ALS. There are all kinds of things you don't think about until you get there. Then you get upset, mad, angry, pissed, whatever. Why do I have to spend money on things I will need for such a short time?

It's winter boots this time. I used to have a full collection of footwear; sports shoes, hiking boots, winter boots, motorcycle boots, dress shoes, casual shoes, even slippers! Now not a one of those pieces of footwear fit me, thanks to the swelling from edema. Even if they did fit, I would not be able to put most of them on; my toes curl under as I slide any shoe on my foot. So, for what will likely be the last winter of my life, I am looking for new winter boots.

I have running shoes I can wear, but they aren't all that warm. I could put on heavy wollen socks, but then I can't put on shoes overtop. It bothers me even more that I can't just buy any old boot or shoe. I've never been that fussy about footwear. If it worked, I would wear it. Now, with paralyzed toes and swollen feet, I need to get winter boots that zip up the side and have a larger shoe size than I typically wear. Once again, clown shoes.

I've already done some online shopping but I won't purchase online. I need to try to see if what looks like it might work really does work. The boots I have been looking at range between $100 and $200. I'll probably only wear them a dozen times. I could go to the thrift store and see what they have; I might get lucky. In the end, however, it just bugs me that I need new winter boots.

Never mind boots. None of my winter shirts, the pullover knitted long sleeve underwear style shirts that I find so comfortable, fits me any more. My waistline is just too much for them. So now I have to look at shirts too. Even if I get cheap ones, they will cost about $20 each. So now it's boots and shirts. Last month it was pants of all kinds. Some would think it paradise, to have to shop so much. Me? I wish I didn't have ALS. None of this would be a problem.

Exhausted Insomnia Sufferer

On Saturday morning I woke up tired, willing to do nothing but sleep for a while. I dd not. Instead I got up and started preparing for my Thanksgiving Dinner. As it turned out, it was a small group when it comes to one my partities; there were only 8 of us. A typical party for me runs from 12 to 20 people. Perhaps it was good that it was small. I am running out of the energy needed for large events.

Even small events like Saturday night can leave me worn to a nub. Add a brownie on top to help me sleep, and I am gone, long gone. When I work up Sunday morning, I simply declined the opportunity to get out of bed. Sam, my HCA, dressed me partially as is now the routine for days like this. She emptied my jug and made sure I took my pills. Then she left.

I slept. I slept all of Saturday night after being tucked in by Jessica; I am sure the brownie helped. I slept all of Sunday, barely waking to pee as needed. I don't really remember much else except removing my underwear at some point. They were damp. I took a sleeping pill at 9:00 PM to make sure I would sleep through the night. I don't know if I needed it or not, but I did sleep through the night, finally waking at 10:15 AM this morning to buzz my HCA, Sam, into the building.

You might think that taking the sleeping pills and eating the brownies is why I sleep so much. Alas I wish this were true; I could simply stop them. All the brownies and sleeping pills do is allow my body to do what it wants to do regardless. Sleep. What I find without them is that in spite of my constant sleepiness, I have trouble getting to sleep. Yes, someone with exhaustion also suffers from insomnia. Sleep issues are endemic within the ALS community. We simply don't sleep well, even though we are tired all the time.

So today, even though I feel like I could go back to sleep right now, I am going to go out, do some shopping, then come home to rack some wine that should have been racked yesterday. Oh, and I will eat turkey leftovers for dinner, and perhaps as a late night snack. Hell, I might even do some laundry today. It doesn't really matter. I am still tired as hell and will still have trouble getting to sleep tonight. That's how it works.

I'll Take A Nap

I awoke this morning completely unprepared to give up sleep in order to arrive at the land of the livng. I was so tired that I fell back to sleep after buzzing the HCA into my building. I slept right through her entry into my apartment, taking her shoes off, putting her slippers on, washing her hands. I just wanted to sleep.

But I have a dinner party today. I can't sleep. I have food to prepare, guests to welcome, things to tidy up. I have to peel potatoes and yams, chop peppers and onions, prepare Cole Slaw and Greek Salad. I have to get ready. All I want to do is sleep.

How bad is it? I fell asleep at the dining table as Sam was getting ready to leave. When Tonny came to make breakfast and help with the turkey, I fell asleep at the kitchen table. Tonny made a coffee for me. I drank it. Then, as you might expect, I had to go pee. So I rolled into the bathroom, hauled out the gear, grabbed a urinal, then fell asleep in my wheelchair while going pee, successfully soaking the crotch in my pants. Oh well, time for a change.

At least now the turkey is in the oven. I have learned a valuable lesson. My turkey roaster is good for turkeys up to about 15 pounds. A 22 pound turkey is too large for my roaster. So Tonny has gone off to Safeway for one of those tin foil roasters and a large roll of tin foil to cover the bird. He will be here in just a moment, and we will transfer the now roasting bird from an open tray to a proper roaster.

Of course "we" is a collective. Brad will do the work. Tonny will run the errands. I will drink coffee, or wine, sitting here fretting over all the things I can't do. I'll probably take a nap.

Not For Long This Time

And so it begins. Late last year I came into a bit of money. It has kept me going, and traveling, for the last year. It will soon run out. I will, once again, have outlived my financial plan. I'm getting closer, though. This time I am within months of terminus. Last time I was out by years. It's not that I am any better at planning or scheduling out any money I might have. I just so happens to have worked out this way.

I'll be out of money, at least "extra" money by the end of this month, perhaps by mid-November. If I work diligently, I might be able to get to my diagnosis anniversary of November 22nd. With that anniversary I will have officially live a full two years past my initial prognosis, and longer than 80% to 90% of my cohort. That means as much as 90% of the people diagnosed on or about the same time as me will have died, or will have resorted to feeding tubes and breathing devices.

I just seem to keep plugging on. I try every outrageous thing I can, yet nothing so far seems to want to kill me any earlier. The every increasing weakness over my whole body is a certain harbinger, a raven on my lamp post, crying darkly into that bleak night which is, or may not be, waiting for me. That's why I am measuring in months these days. I wonder if I should switch over to weeks yet. Who knows? Most certainly not me.

All I know for sure is that I am going to keep going, as long as I can keep going. My decision to stop will be based on any number of factors, finance being only one of them. It's a big one, that's for sure. I continue to hear from other pALS who have been bankrupted or financially ruined by this disease, even here in Canada where we have such good health care support and the various ALS Societies across the country. Everything I do in my life costs just a bit more, takes just a bit more out of me than it would without ALS. I am unable to sustain employment thanks to my weakened condition.

Even my writing fails to pay; I write this blog for myself as much as anything, as a progression tracker and life witness. I've written the odd thing now and again, yet consistently fail to find publishers. The truth is that there are so many people out there who are writers, good and bad, all looking for someone to publish and pay them. I can't handle the competition. I'm just not up for it.

So, once again I am back to scramblng to make ends meet. Once again I will be buying the cheap wine kits, and skipping out on Scotch altogether. Once again I will eat through the food in my freezer, carefully ensuring I get the most out of it, until such time as I may or may not go shopping again. There are resources out there, like the food bank and such. Once again I will use them.

Only this time it won't be for so long, I promise. Please donate. The button is up on the right.

Five Hours To Get Up

Well, it only took me five and a half hours to get out of bed, dressed, and into my wheelchair today. This is clearly not normal, however much of what caused this marathon waking up process is completely a part of my new normal. What happened today is that many small things added up to being big things.

First of all, I was tired this morning when Home Care arrived at 9:30 AM. She was early; another client really needed her at noon so I let her be here early on Thursdays. As it was, her early arrival had little to do with my being tired. Last night I put myself soundly to sleep with a cookie in the afternoon and a large brownie in preparation for bed. I collapsed into sleep at about 9:30 PM. I wanted 12 hours of sleep, yet when Sam arrived, I needed a few more.

I woke up, meaning to get up, at around 1:30 PM or so. Having planned for this, I had taken my pills when Sam was here, and had had her dress me part way. I was wearing socks and boxers. I had also asked her to position my sling underneath me while I stayed in bed. That way I could just attach the sling to the lift, getting my day off and running when I was ready.

I was ready.

The first thing I discovered when lifting myself in my sling is that it was off-center, lifting one leg high and dragging the other across my bed, banging down the side of the bed, becoming lodged underneath the bed rail. I pushed from there to get into my commode chair. Unfortunately, with this odd sling positioning, I was completely unable to get properly into my commode chair. So I turned around, planning to lay down again and reset my sling.

Sadly, as it happened, my stuck foot presented a real problem when I tried to lift it onto the bed. I could not; I am not strong enough these days to lift my leg out of any sort of jam or stricture. So there I was, unable to get into my commode chair, unable to get onto my bed in a laying down position. I thought I might try sitting up instead; it's only been a few months since the last time I sat up. What could possibly go wrong?

I swung back to get bed, lowered myself, and disconnected my leg straps from my sling.

What went wrong was my inability to sit up on my own. No sooner than I had rested myself into a sitting position on the edge of the bed than I flopped over backwards. Now I was unable to reach the leg straps of my sling, unable to sit up on my own, unable to roll over, unable to do almost anything. I was a whale, trapped on the beach, not in any real danger in the short term, not able to make a positional change.

By now it had been well over an hour since I first tried to get up. I wasn't sure what to do, so I lay there for an hour or so, intermittently trying to sit up, trying to reach my leg straps. It wouldn't have mattere all that much anyways. I could have the leg straps all I wanted. Not sitting up meant I couldn't get them under my legs, back up to the lift hooks. I tried, and tried. Then I rested, and rested. Then I tried some more. Then I rested some more.

By the time I was ready to give up, I decided to call for help, specifically from the Pat and Paul, the elderly couple who live a couple of doors down. Pat came up, bringing Paul as an observer. She handed my leg straps through my legs then attached them to my lift. They were still unbalanced, but now I had help to adjust myself and my commode chair. After a great deal of struggle, I finally managed to get squarely seated on the commode chair. It was 5:00 PM.

The next thing was to get to the bathroom, then get back on the bed to redress. I managed to do that in about 40 minutes, except for putting on pants. I was expecting company. I needed pants. It's very difficult to pull on pants while laying down with the sling straps between my legs. It calls for some "adjusting", rolling from side to side, making sure the straps are not lost in the process.

I finally managed to get it all together by about 6:00 PM. I took the next 30 minutes or so to sling myself up, as balanced as possible this time, and get into my wheelchair. Now, after a suitable wait for resting and refreshment, I am up and about. And it's almost bed time again. Time for another large brownie, I think.

Frontal Failure

When you are trapped in a wheelchair or cannot get out of bed easily, having a hefty serving of chili is a bit risky. Having two hefty servings is down right dangerous. The risk goes up exponentially, not geometrically. I am a risk taker. There are outcomes from decisions like this. I should know better.

The biggest parts of the whole equation are the limitations put on me because I am paralyzed from the chest down. There is no ability to just hop up and use the toilet. These events must be planned to arrive at about the same time every day, when a Home Care Aide is here to help with potential problems. I don't know why I say potential problems; there are always problems, none of them potential so much as actual.

It's true with almost every aspect of personal care, that being paralyzed, being in a wheelchair, makes it more difficult, with the concomittant increase is mess and cleaning up. For the men who are reading this, who are not already dealing with it, here is a trial for you. Get a wooden kitchen chair. Wooden is important for potential clean up issues. Sit well back on that chair and, without moving your legs or buttocks, remove your pants and underwear. Too difficult? Then just try pulling out your junk while seated thusly. Once you are in position and ready for action, try peeing into a jug or container of some sort. Let me know how it goes.

For women this problem is substantially more complex. On the other hand, it can be much tidier. There is no junk to haul out, no stream of urine shooting skyward. But they have the added effort of transferring to a toilet or commode chair, something all pALS eventually lose the ability to do. Then what? For most women with ALS, once the ability to transfer leaves, they either need someone to aide with the transfer, or they end up with a supra-pubic catheter.

All in all, I would say the most humiliation from ALS enters into my life through these private activities. Alas, for me, they are not all that private. I need help in getting dressed, getting undressed, and cleaning up afterwards. It's true; I can no longer wipe my own ass, let alone wash and clean it after a disaster. And one of my big life objectives these days is to get through a day without peeing on myself. So far I have failed on all fronts today.

Hibernation

I'm tired today, so tired I can barely type. It's not a shortage of sleep; I've had plently lately. It's more likely related to the Zopiclone I took at midnight last night. Nonetheless, I can hardly keep my eyes open. I think for today that this is it. The snow is winning. I must hibernate.

Don't Be A Shut-In

As much as I hate to plagiarize the punch line from a TV show I don't even watch, "Winter is coming". That is most certainly true here in Calgary as we get our first heavy snow of the season. Winter comes early here, then goes away for a day or two, then comes back, then goes away, etc., etc., etc. Temperatures will start from freezing today, increasing each day, until Friday it will be summer like temperatures, then it will start to get cold again.

That's one of the amazing things about winter here. It can be bitterly cold one day, then the next day a Chinook blows in over the Rockies. The temperatute shoots up. Snow and ice melt. Then, a few days later, winter returns. Right now my tree is draped in heavy snow, the branchs drooping downwards, holding the thinly veiled threat of breaking under the weight. Tomorrow those same branches will lift once again, bringing back the birds that so brighten my day.

This return of cold affects me directly in a couple of ways. First, the snow, slush, and ice make it difficult for me to drive my wheelchair. I get stuck sometimes. I have to go out of my way other times to avoid getting stuck. So I have to wait for the Chinook to come, or for the city and residents, to clear various roads, sidewalks, and pathways. On the first day of the storm, with snow and cold all about, I am a confirmed shut-in these days. Second, I don't have all the best winter footwear. I should probably find some boots which zip up at the side; ones where I can put them on myself. I've had winter gear for a long time, but the boots of the past are too difficult for me now.

Regardless, this early blast of winter will not keep me trapped for long. I'm already looking out the window and thinking about whether or not to go to the mall. I have nothing to purchase, but I haven't been out for a few days. It's about time. If not today, then tomorrow. It will be warmer, and there won't be snow on the sidewalks. I decline to live my life as a shut-in.

The Power Of Human Touch

I lay in bed all day today, and much of this evening too, finally getting up at 8:30 PM to attempt to go to the bathroom. I've been constipated for a couple of days, something that happens to a great many pALS along with many others confined to a wheelchair or living with immobility in some way. I've always said "in order for your innards to move, your body must move too."

There are two principle reasons for my lassitude. First, the obvious. I am worn and tired after a very busy week, nights where I did not sleep well, days where I was on the go far more than normal. The second, less obvious reason, is that I had no reason to get up today. There was nobody visitng. I had no urgent tasks to do. So I did nothing.

The only human contact I had today was the rather perfunctory paid contact provided by my Home Care Aide. She was with me for a short time this morning as I took my pills and put on some basic clothing. Even so, her physical contact with me was very limited, minimal to say the least. It's important to note that Home Care provides for my physical care, not the care of my spirit or emotions. The come in, do their job, and leave, rarely making any contact beyond that minimum.

That human contact is essential for my well-being, for anybody's well-being. There is ample research to say that human touch is essential in our life. As per this article in Psychology Today, "Physical contact distinguishes humans from other animals. From a warm handshake or sympathetic hug to a congratulatory pat on the back, we have developed complex languages, cultures, and emotional expression through physical contact. But in a tech-saturated world, non-sexual human touch is in danger of becoming rare, if not obsolete. Despite the benefits of digital advancement, it is vital to preserve human touch in order for us truly to thrive."

One of the terrific things about having my young grandchildren about is that they have no qualms about touching me. During the week there were any number of hugs from Rose and Quinn. Rose was eager to be near me, most times. Quinn had this charming habit of running up and kissing my arm, then saying "I love you Grandpa." Those moments are immeasurable in their value, both now and in memory.

The sad reality I hear from many pALS, even those in loving, married relationships, is that they don't get touched enough. This is not sexual touch. This is the simplicity of a hug, a hand on the shoulder, or someone sitting in close contact. Even those married pALS tell me that their partners become care givers, and lose the touch of love that matters so much. One said to me "He is afraid to touch me. He is afraid he will break me." It is the sad reality of this isolating disease.

The reality is that human touch does so much for us, beyond the obvious feelings of love and affection. It improves our general well-being. It improves our overall immune system. It reduces our internal anger and agression. It reduces barriers to trust and overall communication. But most importantly, it makes us feel like we are alive, like we have a reason to live. Without human contact, we lose our humanity, and our will to live.

I often go for several days where nobody other than a Home Care Worker touches me in any way. Not a hug, not even a handshake. I feel it. I know it. So where there is nobody to get out of bed for, I just stay in bed. And I revere those who are not afraid to make that physical contact with me. It matters.