Saturday, 31 December 2016

The Last Day Of 2016

It is the last day of our calendar year, that artificial construct introduced by Pope Gregory XIII as a way to correct the Julian calendar, itself implemented by Julius Caesar 45 years before the birth of Christ. Man is the only creature on earth to measure time, the only creature to know the days of his life by count. I wonder if this is when we left the Garden of Eden, if this was our knowledge, the knowledge of time, that our days are limited, that we in fact are mortal?

Yet we need this time, this calendar. It marks the days when the sun will return from winter. It marks the best days for planting, the best days for reaping. It marks the ways when the sheep should be shorn, when the cattle will calve, and most importantly, when the Gods must be worshipped. We live in such a busy world. Coordination and planning are such a part of our life. Time is the new God. Time is what we all worship now.

I have used this year well. In this year I have written 364 blog posts, including this one. The missing post was due to hospitalization, also the cause of one very brief entry. This blog has seen 24,000 users, an average of 2,000 a month, or 65 individual visits each day. Some are returns, some are one time visitors, and many are people who follow my life each day. For all of them, I am grateful.

The vast majority of these readers are from the US and Canada, representing 88% of my readers. These are followed by Great Britain, Australia, and Sweden, and a great many other countries. I know who some of you are. You are my family, my friends, the people who want to know how I am doing. For others, this blog has become a learning post, a place to understand ALS, and unintentionally a place to be inspired.

In terms of cities, Calgary is the biggest, representing a full 10% of my readers, followed by Vancouver, Burnaby and the Lower Mainland including Abbotsford, making up another 10%. The next largest cities are New York, Chicago, Ottawa, and Kelowna. Again, I know who some of you are, some of you are strangers to me. I appreciate you all.

I've also done four video blogs this year, one of which was from my hospital bed. Thanks to input from friends and readers, I've made a YouTube channel for my video blogs, a new experience for me. I want to keep this up, to keep doing video and other different things. I love the written word, yet there is a place for other ideas. Then there is my new cooking blog. I've only made a couple of posts there. I'm not sure I have the discipline or content for this. We'll see.

The one thing I missed this year was Road Tripping Richard. My lack of road tripping this year was primarily driven by finances. I did get away, thanks to Katherine, for a quick trip to Cuba in January. There was also my camping trip at my brother Jim's place, along with the trip to Saskatoon thanks to David. Oh, and a trip to Vancouver while Katherine was in Hong Kong. I miss travel. This year will be different. I'm going to get back on the road again.

If this is a look at my year in review, then my physical review must be here. In short, I continue to worsen. This year saw the loss of my core muscles, the continuing loss of my arms, and the overall losses from ALS. I would rather not think about them. My preference would be to focus on what I did this year, the people who made a difference to me this year, and how well I lived with ALS.

Friday, 30 December 2016

No More Incontinence

I've been home since Monday. That day to this, I have not had a single problem with incontinence. No random peeing. No dribbles or leaks. No night time surprises. This morning when I went to the toilet and went pee; I was surprised at how strong my bladder was, how well it was working. This is more than just a result of getting past a cold. I am now convinced that something was happening with my bladder well before I caught the cold. All the cold did was pick up and run with the weakness already within me.

It makes me wonder if I had a low grade bladder infection for some period of time. This is the same thing that happened with the Urinary Tract Infection I had last August. I had been battling a low grade infection when something triggered it and the infection took off. This time, if my suspicion is correct, I had been battling a low grade bladder infection when the weakness from the cold made my bladder control muscles sufficiently weak as to cause incontinence. There was no strong infection for the doctors to see in my bloodstream, but I can only imagine that two days on powerful IV antibiotics may have cleared up any doubt.

Finding success in not peeing my pants; it's another of the weird measurements in life I have these days thanks to ALS. It's also the way one thing hides another. Did the cold trigger something in my bladder? Did the problems with my bladder begin well before the cold, only to be masked as the expected issues of aging and ALS? I never really know what is what. There is rarely a clear connection of cause and effect for things that happen to me these days.

My breathing is a great example. I have been having trouble lately with breathing. It's not that I cannot breathe, nor is it that I cannot get enough air. It's that my ability to pull in air is weakened; not enough to need a Bi-Pap yet, just enough that I have to stop and rest on a regular basis. On Wednesday evening, Katherine and I went for dinner. I became exhausted and was having a hard time regaining my strength.

Was this from the cold, or is this a new normal for ALS? I don't know. All I know for sure is that right now I can't generate a good, lung hacking cough. I have a wheeze, a weak cough. I can't quite clear my lungs of phlegm. The phlegm is from the cold. The lack of core muscle strength makes things worse. So once again I am compelled to deal with the fact that I don't know which is which.

In the end it doesn't really matter. This time a simple cold put me in hospital; weakened, febrile, mildly incoherent, clearly incontinent. Now that I am out, I am continent once again. That's all I got. No real reasons I can elucidate, no clear answers to be given. Now all I have to do is wait for whatever strength I might get back.

Thursday, 29 December 2016

Up, And Dressed, And Out Of Bed

I'm up, dressed, and out of bed. For today, this is a major triumph for me, a victory against the evil Axis of losses ALS and this stupifying cold. The weakness I feel today is profound, going beyond anything I can easily describe. It is as if everything within every muscle within me has been slashed in half for some sort of bizarre seasonal sale. Things work, but nothing works well.

Yesterday I wanted to take Katherine out to dinner and a movie. Before I went in hospital she mentioned wanting to see the new Star Wars movie, the Rogue One spin off. I wanted to see it too, so I suggested we go for sushi, and then go to the movie. We left here before 5:00 PM, allowing plenty of time for transfers, for dinner, and then for the movie. The first hint of difficulty arose when we went to get me into the truck.

Usually Katherine gives me a boost. I help out with what muscle strength I have, and between the two of us I end up out of my wheelchair and onto my transfer seat. Yesterday it took three tries just to get one edge of one butt cheek onto the seat. From there I tried to slide, but the pants I was wearing too a glue-like adherence to the seat, their coefficient of friction nearing infinity. Both of us pushed, and pulled, and hauled, eventually moving me into a position where I could get what minimal lift I have left in my arms to move me sideways enough for functionality.

Once we got me into the truck, the rest moved along normally. We went off to our restaurant choice, a sushi grill near the theater we were attending. Getting out was oddly awkward, in part because of the snow, in part because these damned pants wouldn't slide well. It looks like I need a small slider board for the truck now, even when I have help.

We ate dinner and were just finishing up when this massive wave of exhaustion hit me. I was having trouble moving. I was having trouble breathing. I just couldn't seem to build any strength for anything. I already knew that getting into the truck would be trouble. Katherine took one look at me and said "We go home now." There was no argument from me,

We went out to get me in the truck, but the angle of the truck thanks to snow under the front wheels, along with my weakness, meant Katherine could not lift me onto my seat. Fortunately there was a fellow nearby with sufficient strength and height for a full boost, so I did make the lift. All other things went normally, and we went home.

The exhaustion from yesterday follows me today. I found myself barely able to dress. I am supposed to go across the street for new medications but I lack the energy. I also wanted to get Katherine's Christmas gift, something I was unable to do before going into the hospital. That, too, is beyond me.

It seems the additional weakness generated by this cold, along with the normal weakness of ALS, is really putting a stop to my life's activities. I am glad I am up now. What to do, I don't know. But I am up, and dressed, and out of bed. For now.

Wednesday, 28 December 2016

Cold Effects

I woke up this morning without a fever. I woke up this morning without a headache. I woke up this morning without the additional weakness which has plagued me through my recent ordeal. I woke up this morning with only minor congestion. In other words, I woke up this morning and I did not have a full-on cold, only a few lingering after-effects.

This has been a scary week for me. It's scary to think that something so run-of-the-mill as a common cold could spiral off into something which puts me in hospital with a very real fear as to whether or not I would come out again. Of course the fear was based not just on my symptoms, but on knowing what respiratory challenges can mean to me at this point in my ALS journey. It's not enough to kill me on my own; it's just enough when combined with other things to make me very, very ill.

While the first few days of this cold were difficult, in the end it was the fever that sent me to hospital. The admission report tells the story of someone who is potentially in serious shape, not life threatening by any means, but serious. Once all the tests were done, once my fever had broken and the hallucinations had stopped, it turns out that all I had was a common cold. The fever was most likely a result of bladder retention. The incontinence of the prior days was also most likely a reflection of that same bladder retention, compounded by the muscle weakness from the cold. I was too sick to control my bladder, long and short of it.

I am by no means finished with this cold. It will take me days, if not weeks, to recover from the weakness, if I ever recover at all. With ALS, once you lose something you never get it back. I did not lose muscle strength. What muscles I had were confounded by the rhinovirus, the cold. But still, something of what I lost in the fever will be lost to me forever. It is the nature of this illness.

The continuing recovery of this cold will be the final ridding of the sniffles, the clearing of the last bit of fluid from my lungs, the recovery of my clear senses, unmuddled by the viral cloud within my head. It's gonna take a while, a time for me to rest and recover. But I will. I always do. Weebles wobble but they don't fall down.

Tuesday, 27 December 2016

Carrie Fisher

I was going to write about the nonsense I went through coming home last night, but the death of Carrie Fisher has kind of swept that from me. Hers is the passing of a generation-spanning icon. She most certainly was an icon of my generation, but also that of my children. Just recently my daughter sent me a video of her daughter singing the Star Wars song. Carrie Fisher was more than just one role, just one character, yet Princess Leia will be with all of us for a long time.

The first Star Wars movie came out in 1977. I remember driving to Seattle from Abbotsford, with my girlfriend, the woman who would become my wife, and another friend. We wanted to see the movie at the Cinerama in Seattle, because it had the curved screen and a sound system that would show the film in all its glory. I still remember standing in line, waiting to get tickets, this beautiful young woman next to me, and seeing Princess Leia on a poster. I looked at the poster. I looked at Carla. Then I thought to myself, "Carla's prettier than her". I was young and in love, but it was still true.

The special effects in the movie were stunning, but very little matched the looks of Carrie Fisher. Her hairdo became both a target for mockery and iconic in its own right. Her character was an angry one, seeing all she knew destroyed by the evil Darth Vader, who, unknown to her, was actually her own father. Twist on twist, story within story, she play well for action, beauty, and laughter.

We were young then. There was hope for a better world, a world where space was simply the great outdoors, and planets were mere stopping places. Now we have all aged. Time has taught us its cruel lessons. Our icons, the icons of this mortal time and place, are passing. Musical icons, theatrical icons, greats of literature and discourse; they must all leave us. Carrie Fisher was young then, and still young now, only 60, even younger than I. The image of her as a beautiful 22 year old girl will be with us on film forever. Unfortunately the beauty of her person is mortal. She has left us.

More than any other loss in culture this year, hers affects me most. She was younger than me. She was witty, intelligent, self-reliant. She bore the challenge of the years with grace and charm. She was my princess, the princess of my generation.

Monday, 26 December 2016

Boxing Day In Hospital Too

It's Boxing Day and I am still in hospital. I was hoping to get out today, and it is still possible. The biggest impediment seems to be the hospital's inability to figure out how to get me home without calling for an ambulance transfer. They just seem unable to deal with something as non-conventional as an ambulance taking someone home instead of bringing them in. They'll figure it out.

Regardless, this is Monday and that means video. Here is the video.

Sunday, 25 December 2016

Merry Christmas

I'm sitting here in my hospital bed, the sky darkening after a long and beautiful Christmas day. I am in good spirits, having spent the last couple of hours visiting with my friend David, chatting away about how to setup gmail accounts and how we are going to approach our intentionally unplanned road trip in February. I am getting better. I am feeling better.

Hospital on Christmas Day is a fairly quiet place. Not so many staff in the hallways, not so many calls on the intercoms. Certainly meals came and went, yet there were fewer of them being delivered, and if I am any example, even fewer being eaten. David did me another solid, delivering unto me a Christmas gift of a Teenburger.

Katherine was here earlier in the day. She had things to do and places to go, yet still took the time to come and see me. She brought me an orange, peeled and ready. It's the giving kind of thing she does, the kind of thing which makes her such a special person. I wish our visit had been less rushed. Unfortunately she arrived at about the same time as did my first need for the toilet in four days.

My hospital room is an older one, used to isolate patients like me, where diagnosis is inconclusive and potential contagion is problematic. The bathroom is minute and it took a couple of Nurse's Aides to get me out of bed, onto the commode chair, into the cramped washroom, and out again. The commode chair, looking like it came over from Europe via steamer in the 1920's, had to be pushed into place, where I could be left in relative peace to follow the call of nature. The real difficulty was in cleaning myself afterwards. With the size of the commode chair and the cramped quarters of the bathroom, I could not clean myself. This service was provided by the Nurse's Aides.

Rather than going into details about being left naked in a commode chair with the room doorway wide open, or the impact on my colon of someone wiping my ass with a warm cloth, let's just say that the return to my bed was not without incident.

These are the things I will leave behind, the events of the hospital. What I won't leave behind are the memories of visits, from Katherine, from David, from Tonny. I won't leave behind the feelings of being loved, cared for, wanted. I won't leave behind the memory that Christmas Day in the hospital wasn't bad at all. In fact it was quite the reverse. It's been a wonderful day, a terrific Christmas. And tomorrow, if all goes well tonight, they will send me home. If not, I can handle that. After all, with a little help from my friends, I've gotten this far.

Saturday, 24 December 2016

Hospital Daze

I'm finally feeling well enough to write. This bout with infection has been one of the toughest battles for me so far in my ALS journey. And it all starts with the common cold. As with all of these situations, there are more than one causative factors, and more than one problem outcomes. But the cold, that silly little cold, that's the rub, the root of it all.

If course I knew I was coming down with a cold on Monday night, the destructive virus settling into my lungs by Tuesday morning. The cough began in earnest. Weakness settled into me. I was lethargic, unwilling to commit to doing any of the many things I had planned for the day. It was at this point that I began to realize that my bladder had become spastic. If you are wearing a catheter, as I often do, you don't notice this so much. It was a fateful decision when I decided to take the catheter off for Tuesday night.

Tuesday night was a wet one. I went through multiple sets of underwear and every towel I own, all have which been twice laundered since then, thanks to Kate and Katherine. By the time I got going ton Wednesday morning I was beginning to feel with weakness which signifies something significant going on in my body. I still thought I could beat it, I still felt like I could fight this on off.

What I didn't know was that, in addition to the impact of the cold on my lungs, the resident bacteria we all have in our bladders sensed that my body was weak, so took this opportunity to rise up and multiply. Now I had a cold, and a bladder infection. This really took hold on Wednesday night. I had to call Home Care for emergency assistance in changing my wet clothes, again, and in getting onto my bed. I simply lacked the strength for even this simplest of tasks.

At 1:00 AM Thursday morning, tried sitting up in bed. I was sufficiently weak that I failed at this maneuver, ending up with one leg half way out of bed, stuck between getting up and falling down. I called 911. The came and rescued me, and even helped me change my wet clothing, again. By morning my temperature had reached 38.5C, high but not dangerously so. However my bladder spasticity and weakness were very severe. I called 911 again.

I've been here since Wednesday morning. The doctors want me to stick around until they can determine the cause of the bladder infection, the root cause. The are also talking about teaching me to self-catherize with an internal catheter, not a process I look forward to. It doesn't really matter though. This is not a longer term situation. I have ALS, That means, soon enough, that I won't be able to do any "self" care.

I'll wait for a couple of days while they do bladder scans and urine tests, while they observe me closely, but not all that closely. Then, once the medical team has a better handle on what to do, I'll take what they have to say, and go home to start living my life again.

Friday, 23 December 2016

In Hospital

I'm in hospital with multiple opportunistic infections, all arising my my getting a cold. I was too sick to write yesterday and do not feel up to writing yet today. I'll see how it goes later today.

Wednesday, 21 December 2016

A Nasty Cold

I'm struggling with a nasty cold today. Yesterday too. For most people, it would be a run-of-the-mill kind of cold; headache, cough, runny nose. For me, with my compromised immune system and weakened respiratory system, any cold is a nasty cold, any congestion is serious and dangerous. This cold was bad right up until a couple of hours ago, but seems to be breaking now. I'm really quite surprised at how quickly the corner turned. At 8:00 AM, I was thinking about going to the hospital. Now, three hours later, I'm planning my Open House for tomorrow.

I've always been a quick recovery; being sick usually meant a day or so down, then up and running again. This time the timing was pretty much the same, but the process was a whole lot scarier. Last night my chest felt like it had a cement block on it. I could breathe, but I had a truly unproductive cough and poor respiration. This morning I felt much the same, yet now that sense of pressure is gone. My cough is still pretty weak, but I'm doing better.

One of the tools which has helped me is my Lung Volume Recruitment bag. Essentially the LVR is an air bag with a breathing tube. I breath in, then pump the air bag to push more air into my lungs. This has the effect of giving me a lung full of air to expel in a cough. It works. I cough better. I push out phlegm better. There's less chance of pneumonia.

There is another thing which has made my life better over the last couple of days; Katherine. She came over yesterday when I was feeling bad, stayed with me all night to make sure I was okay, and is still here now, doing laundry and generally taking care of me. While we are no longer a couple, she is clearly dedicated to me, and I to her. I'm not sure what I would have done without her here. Most likely I would have ended up in hospital. It's impossible for me to properly express the level of gratitude I have for all she does for me.

Tuesday, 20 December 2016


I'm not feeling all that well today. I woke up last night at about 2:00 AM with a tickle in the back of my throat. I started coughing. I wasn't able to settle until about 6:00 AM. Even now I have a slight cough, along with the constant urge to clear my throat. I truly hope this is something mild and passing; I definitely don't want to get sick this week.

Colds and other respiratory infections scare the daylights out of me. It is not uncommon for PALS to come down with a slight cold, yet end up in hospital with pneumonia. This is because we have what doctors call an "unproductive cough". We cough, but we don't have enough expulsive power in that cough to push out moisture collecting in our bronchia and lungs. So instead of coughing out the phlegm, it builds up no matter how hard we try.

It might be useful to note here that respiratory insufficiency is how the vast majority of PALS die. More plainly put, we can't get enough air when we breathe in, and we can't expel enough CO2 when we breath out. We don't actually die from respiratory failure; our lungs work just fine. It's that our muscles which do the breathing for us fail to do what they are supposed to do.

Pneumonia is another common issue and cause of death for PALS. In the last couple of weeks, three PALS I know online have gone into hospital with pneumonia. Once again, it's because we can't cough out the liquid in our lungs. Of those three, one did not recover. After much difficulty, the other two survived to fight another day.

There are machines to help with these problems, things like cough assist machines which use rapid reversing airflow to simulate a cough, and Bi-PAP breathing machines to aid in delivering air during breathing and, equally importantly, forcing out CO2 from the lungs. Then there is the classic tracheotomy, where a machine completely replaces the breathing function altogether. It's mechanical intervention to extend life. I'm not sure if it makes it any better.

Last night, at 2:00 AM, when I started to cough, I thought to myself "Here we go." This slow slide will not be a single event until the big one. It will be series of uncomfortable, intermittent breathing issues, ranging from a weak cough to not getting enough air. This actually started a while ago, the whole running out of breath thing. This is just the first time I've had a cough to go with it.

Monday, 19 December 2016

Quiet And Calm

It's a quiet day, another "calm before the storm" kind of day. The party is over. My apartment is cleaned up. I have today and tomorrow to rest up, then the game is on again. Wednesday, Kate will come over the help bake cookies. Thursday is my Open House for my neighbours. Friday is a dinner for Katherine's friends. Saturday is Christamas Eve afternoon with Kate, Phil and his boys. Then comes Sunday, Christmas Day. On that day I will be home alone with my thoughts.

Since it's Monday today, here is a video blog. I've taken David's advice and put the video on YouTube with a link to it here in my blog. The only thing I don't like about this setup is that when the video is complete, YouTube shows other videos for you to watch. I don't mind that so much, but I don't get to say what those videos might be. So forgive me if YouTube shows you something you would rather not see. I promise; I didn't do it.

Sunday, 18 December 2016

Another Great Christmas Party

I am in recovery, recovery from last night's party. It went so well, better than I could have hoped, yet I spent all of the evening ensconced on my couch, wheelchair put well away from me. Perhaps that is why it went so well; I got out of the way and let things happen. My friends got busy and made things happen. I admitted my emotional and physical limitations. My friends provided me with so much emotional and physical support. It all worked out the way it should.

Whenever I have one of these parties, especially the large parties with over 20 people, I worry about three things. I worry that people will not show up. I worry that there won't be enough food. I worry that people won't have a good time. All of this is irrational on my part. I've never had a party where lots of people didn't show up. There's always one or two who can't make it for whatever reason, just as there are people who I thought wouldn't make it but do. People come. That's what matters.

The whole "not enough food" thing is equally irrational. I forever make too much food on my own. Inevitably people show up with delicious side dishes and treats. The tables are always overflowing with salads, main course dishes, pastries, desserts, pies, and every other thing you can imagine. Leftovers crowd my fridge the day after; I don't have to cook for at least a week if I don't want to. There is always lots of food, yet I always feel I should have made one more salad, one more vegetable plate, one more dessert dish. That's just the way I am.

As to having fun, I have never seen a livelier, more engaging group of people. When we get together, it's so much fun it's silly. When we get together in a large group, there are small parties within the party, people having side or central conversations, people engaged with each other, laughing, enjoying the food, the wine, the company. Of course we have fun. That's how all of this started.

So I find myself today really uplifted by it all, at the same time as I am physically beaten down by it all. I am exhausted. I will be in recovery for a few days. I've noticed the changes year after year as my weakness grows, as ALS takes over more and more of me. This year was the first time I actually let it all go, gave up and submitted. It worked out so well I might try it again, if there is an "again". I hope so. I also know where I am and where I am going. I'm in no hurry to get there; I want more parties like last night.

Saturday, 17 December 2016

Morning Routine

I have a routine each morning, a routine that stays in place no matter where I am, whether or not I have home care, no matter what else is happening. This routine is critical to me. It ensures that I accomplish all I need to accomplish each morning. Without the routine I forget things, like taking my pills or brushing my teeth or putting on pants. So I stick with my morning routine.

I wake up. I lie in bed for about a half hour building the energy and courage to face the day. I transfer to my commode chair, a source of problems I will later divulge. I take my pills. I go into the bathroom carrying whatever jug or urine container I used from the night before. I clean and sanitize said container. If it is a jug, I leave the sanitizing solution in it and put it aside. If it is a bag, I drain it and hang it in the shower to dry. Also, while the water is running and after the container is clean, I will brush my teeth. I'm in front of the sink anyways. After all that, I go to the toilet. Once complete there, I wash my hands thoroughly and head into my room to get dressed.

There are, however, challenges to this routine as my core muscles fail me. The commode chair is basically a toilet seat one wheels, one which spreads your butt cheeks the moment you sit on it. Now think of what your bowels say to you once you are seated with your butt cheeks spread. Yes, that. Over the last year or so I have been able to manage that urgency, keeping my bathroom routine in place, ensuring I get things done. However as my core muscle weaken, maintaining that clench and clutch is becoming increasingly difficult, especially when something within me needs to depart urgently.

This morning was one of those mornings. I was following my routine. I was sitting in my commode chair. I was cleaning my container. Then I lost focus. Do you know that feeling you get when you know something uncomfortable is going to happen knowing for a certainty there is nothing you can do about it? I had that feeling. It happened.

I rapidly broke my routine and rolled over to the toilet. If this had been a minor, controllable event, I might have finished brushing my teeth. Not this time. My innards were expelling with the force of liquid rocket fuel. My muscles could not contract enough to hold back the flow. So I just rolled over the toilet and wondered what to do next. You see, I was still wearing my underwear.

This time, and there have been other times, I just said to hell with it. I did not want to smear the contents of my underwear all over me as I dragged them off. So I just got my small pair of scissors from the bathroom shelf beside me, and I cut my underwear off, mostly. Remember, in all of this I am still sitting, still unable to lift my butt cheeks up enough to clear the area. So I pushed what I could of them beneath me, and turned on the bidet spray. I cleaned myself, ragged remnants and all. It wasn't pretty. It wasn't perfect. Hell, it wasn't even all that clean. So I went into the shower afterwards and cleaned myself thoroughly.

You know, sometimes a pair of underwear are just not worth it. Sometimes you just have to give it all up and let it all go. Sometimes cutting away the damage is the best way to resolve a difficult situation. But after it all, I still forgot to brush my teeth. Dammit! Morning routine!

Friday, 16 December 2016

Weekend Anxiety

It's going to be one of those days. I feel really weak today, sufficiently weak that I needed help getting dressed. I get days like these. It would be nice if I could ascribe these days to something, perhaps lack of sleep, or the rum and eggnog, or doing too much yesterday. I can't. That's the thing, these days just come along every once in a while. Unfortunately they are often precursors to a change, and not in a good way.

Then there are the other things that are going to make this a difficult day. My truck is in the shop; I'm going to call them in a minute to see if they have figured out what is causing the battery to drain. Since I have no transport, this is, of course, the day I realize I am almost out of catheter supplies. I can call the pharmacy and they will deliver the supplied, but there are a few other things I need and have to pay for, like a new grabby stick and some additional catheter straps, so I wanted to go into the shop.

There's also this internal screaming going on inside my head, telling me I have to get ready for my Christmas party tomorrow. Of course I don't. It's a Christmas Potluck. Kay and Walter are bringing the turkey. I already have a Bean Salad at the ready, plus Cole Slaw fixings in the fridge. I have nothing to worry about, except worry itself. My inner anxiety is showing. I have to make more food.

Last night I made some Mince Tarts. I cheat with these things. I buy the Mince Meat at Safeway, then add a couple of shots of Spice Rum into the mix. The hardest part for me is rolling out the dough, especially with a broken rolling pin. So that's another thing I want to do today, go to Home Outfitters to get a pastry mat and rolling pin. Both of mine have been damaged over the last few days.

So, in summary; I don't have my truck, I'm worried about the repair costs, I'm feeling very weak and worried about decline, I am anxious about my party tomorrow, I want to do some baking and need equipment, and I have a bottle of Spiced Rum sitting in front of me, along with Egg Nog in the fridge. I'm pretty sure things will work out all right, even if I pee in my pants every now and again this weekend.

Thursday, 15 December 2016

More Truck Trouble, Again

I have to go out in a few minutes. I am picking up my friend Emma and driving her around so she can do some errands. Emma has a brain injury and, while recovering strongly in so many ways, has trouble with peripheral vision and cannot get a driver's license. I understand her frustration. I am more than just a little happy to be able to help her.

Unfortunately my truck has been problematic these days. The battery keeps dying, even though it is a brand new battery. Unlike me, you can just recharge the truck battery. My battery just keeps on dying and dying and dying, an Energizer bunny in reverse. The trouble all started with the camping trip to Jim's place outside of Edmonton when I inadvertently left the lift seat engaged overnight.

So I have finally decided to bite the bullet and pay the $175 for the analysis of what the heck is causing my truck battery to die. This is not your normal cold weather death; my truck is parked indoors. Nor is it because I don't drive often enough, although that is a factor. In the past I was driving every other day or so. Now getting into and out of the truck is increasingly problematic, so I only drive once or twice a week at best. That means the truck sits for three or four days, sometimes even 10 days without being run.

Even at 10 days, the battery should be okay. Modern vehicles all have computers in them, computers that run all the time. This will wear any uncharged battery down completely over two or three weeks. My run time gap is nothing like that, so the battery should be fine. So something from that fateful weekend at Jim's is broken, something in the truck's electrical system is draining the battery. My greatest fear is that it will be something with my lift system. I sure hope not. That is the only thing that makes the truck useful to me.

Wednesday, 14 December 2016

Another Broken Glass

People wonder sometimes why I am so picky about where dishes go in my cupboards. Be they Home Care Aides or friends helping clean up, the placement of dishes in the cupboards makes perfect sense to me, but little sense to anyone else. That's because my dishes are placed in such a way that I can reach the ones I need the, most easily.

For example, I have a small metal stand on my counter. Beneath I have four coffee cups, the ones I use day in and day out. They are easy for me to reach. On the top part of that little shelf, I keep stuff for making espresso, along with one tall glass and one short glass. If I want a cappuccino, all the tools are right there. If I want a glass of Scotch, the glass is near at hand. If I want a tall Rum and Coke, the glass is near at hand.

If I want anything more than these basics, it is most likely because I have company, people who can reach into shelves. So coffee cups, tall glasses, short glasses and such are all kept on the second shelf of my corner cabinet, where reaching them is awkward for me without the aid of a grabby stick. The first shelf is reserved for wine glasses and cappuccino cups. I have lots of wine glasses but only four of the bowl type cappuccino cups, and they are all within easy grabby stick reach.

The same with plates. The plates I use most are on the first shelf of the cupboard. The bowls and matching coffee cups are on the second shelf. I rarely use them for myself. If there is company, they can help get dishes. That pattern, ease of access and probability of use drives all my cupboard placements. If I don't use it often, it goes up. If I use it often, it stays down.

With pots and things in the lower cupboards, it's not such a big deal. I want to avoid using the lower shelves if I can. Fortunately all of my lower shelves slide out, making getting at things a lot easier. The only exception is the Lazy Susan in my corner cupboard. Once again I try to keep oft used things like salad and mixing bowls on the top shelf. Roasters, the slow cooker and rice cooker, and my stock pot all go on the bottom. I can get them if I need them, which is not all that often.

There is a price to all of this, and today I paid that price. My new Home Care Aide, not understanding the placement of things, put my Scotch glass on the second shelf with all the other drinking glasses. She put my wine glasses up there too. Then she put my daily coffee cups on the first shelf. I was not there to micro-manage things, so they ended up in the wrong spots.

When I came into the kitchen to resolve this state of disarray, I got the coffee cups without issue. They were, after all, one the first shelf and easy to get with the grabby stick. On the other hand my Scotch glass was on the second shelf. I grabbed it with the stick, lifted it from the shelf, and promptly dropped it. The glass shattered when it hit the counter, spewing small shards of glass all over my kitchen.

I did my best to clean it up. I got the other glasses organized without disaster. But now I am short another glass, and a Scotch glass at that. Now I have to buy more Scotch glasses. So aside from the physical and emotional effort of arranging my glassware and breaking it, there is an actual real dollar cost here. So don't give me shit if I micro-manage. You probably don't get it. You probably don't know all the reasons. And I'm tired of constantly having to explain myself all the time.

Tuesday, 13 December 2016

Energy Transfer

Like most people, I worry about a decent energy transfer program. Only mine is not about fossil fuels. I need an energy transfer program to transfer energy from my good days over to my bad days, days like today when I feel exhausted and shaky.

It is inevitable for me that a good day will be followed by a bad day. Lately I am having longer bad day periods between the good days. It's important to recognize that these are not emotionally or psychologically bad days; they are days where my energy level is low, where I have trouble getting started with my day and even more trouble keeping it going.

The usual pattern is that I have a good energy day, a day where I slept well the night before, a day where I feel physically capable. Then, the next day, as in today, I have a tough time waking up, a tough time getting going, and feel all day as if I could just go back to bed. These low energy days will continue, usually for a couple of days, before I build up the energy once again to have a good day.

I've tried various things to see if I can modify this pattern. I've tried going to bed early on a good day, but I find I cannot sleep and need a Zopiclone, which some days doesn't work at all. I've tried cutting back on energy consuming activities like going to Trivia or shopping. That doesn't do much except cause me to miss out on things important to my life. The energy doesn't carry over.

What I do find is that when my Home Care Aides come and get me up, I can get more done. It seems as if having the option to sleep causes me to sleep more, even though I have plenty of low energy days on HCA days. The ideal combination is like yesterday, where I get a bit of extra sleep, where I have a high energy day, and where the HCA helps kickstart if for me. I look forward to those kinds of days. Those are the days where I get things done.

Monday, 12 December 2016

A Video About Being Happy

It's funny how the little things can make for such a nice day; an extra hour of sleep, a night without peeing on myself, a clean kitchen, a kind word from a friend. So many things, none of them particularly giant in an of themselves, add together to give me a good feeling about today, a good feeling about being alive.

I thought I would try another video blog, another way to tell this story, the story of my life. I know that some of you will have trouble with the codec, that some platforms won't play an MP4 from Windows without an installed interpreter. I'm not sure what to do about that. Please forgive me if you cannot view the video. I promise to go back to writing tomorrow. After all, I love the written word so much more.

Sunday, 11 December 2016

A Time For Leaving

It's quiet in here, in my little apartment. Chris has gone; he left this morning at 8:30 AM, but not without me getting out of bed to have a cup of coffee and see him off. I stunned myself with that exertion. Immediately upon his departure I went back to bed, staying there until 2:00 PM. It doesn't matter though. Without him here, my place has gone quiet, not that he was noisy at all.

I can actually feel the presence of others in my home, know that they are there by the micro-sounds we all make, the tiny clink as they get a cup for coffee, the air that whooshes out of the cushion when they sit down on the couch, the squeak in the laminate as they walk from bedroom to kitchen. It is those sounds, the quiet sounds of activity and life which make a hollow apartment into a home.

My own sounds do that too, although not in the same way. I can hear the keys on my computer softly clicking as I write this blog, the creak in my wheelchair frame whenever I try to shift position. I can smell the coffee, see the shadows, hear the million small sounds of life alone. Yet even with all of this, my apartment feels so empty when someone leaves me after a visit. I have to get used to once again being alone in this space, this container holding the cargo of my life.

Of course this sense of aloneness, of solitude, will disappear quickly today, gone in a moment, just as Chris was here and gone but for two nights and a day. It will go because I will go, out to the mall for groceries and medications. It will go because Kate will come for dinner. If I am alone, it's rarely for long, and mostly at night.

I like having people around me. I live through the lives of others, as if I was some sort of vampire, my sustenance only found by drawing on the energy and life of others. I am an extrovert, well out the scale. I was thrilled when Chris came, thrilled with the time he spent with me, and sad when he had to leave. This is life, written large and written small. We come into one another's lives, we enjoy that which we can in this time together, and we leave, either willingly or not.

What is happening to me is predictable. As I said to Chris, "Don't wait too long for the next one; I won't have many more of these." I was talking about weekends where I would be alive, functional, capable of having guests. At some point I will leave, either willingly or not. We all do.

Saturday, 10 December 2016


If I am being open and honest about my life, then I have to admit that today I have a hangover. This is a rare and unusual experience for me. I simply cannot remember the last time I woke up feeling this way, with a headache, with a mouth that feels like it is full of cotton, with my body feeling like it is rejecting me. I am channeling my Dad with that last statement; he responded to his many hangovers with that statement.

Of course the cause of this is alcohol, in the form of a wonderful bottle of Scotch. Yesterday my friend Chris Gordon arrived from Vancouver and took me shopping at my favourite liquor store. Actually he didn't take me in; I stayed in the truck. He knows well what I like, and he bought it for me. I, being the greedy, uncontrolled person that I am, drank half of the bottle last night. Happily enough, Chris helped with the other half.

Unfortunately his flight arrived late, so we got a late start to our evening of story telling, Scotch drinking, and general hijinks. Fortunately I neither burst a catheter nor spilled a drop. So here I am, shaking, not knowing if it's the hangover or if it's ALS. I know I shake pretty good when I don't have a hangover, so the shaking I will ascribe as normal. The rest of me is in rebellion internally.

Even this is a good thing. I am still here. I can still tie one on. I can still sleep one off. I am still functioning today. This hangover is a reminder that I have not lost everything in my life. I know it's hard to think of a hangover as a good thing, but it seems to me that I can still do it, and that is a good thing. Whether or not I should do it is a subject of some debate. I leave that to the morality of others. For me, I am up and about, feeling like shit dragged over a log, unable to get my head to stop pounding, desperately needing another cup of coffee. Ain't it grand!

Friday, 9 December 2016

Trouble Breathing

I wish, just once in a while, good news could stand on its own, and just be good news alone for a while. Unfortunately with ALS, this is virtually impossible. While I had good news yesterday, it was tempered with the realization that I am entering a new phase of my illness, and have been slowly entering this phase for a couple of months. Remember, with ALS, nothing is easy, nothing is fast. It's all slow and difficult.

Breathing is the issue slowly arising in my life. It's not that I can't breath; it's that I run out of breath so much more quickly than I have in the past. It used to be that I ran out of breath with heavy activity, things like dressing, or taking a shower, or moving things about. Then I started to run out of breath with simple activities like rolling my wheelchair over carpet, or preparing a meal. It's getting worse.

These days I find myself running out of breath for no reason at all, or for what seems like no reason at all. For example, if I am in a conversation on the phone, I tend to run out of breath. For that matter, any conversation can cause me to exhaust myself, cause me to run out of breath. Sometimes I run out of breath just sitting here doing nothing. It's not that I cannot breath; it's that the results of breathing don't seem to be meeting the requirement.

This transition is a signal. It's hard to stay alive when you are having trouble breathing. Right now it's not an all the time thing. A while ago it was a once in a while thing. Now it's a more often than not thing. When it becomes an all the time thing, that will be a marking point, a place where I am compelled to decide. For now, it's annoying. I can manage it by managing my exertion, be it emotional or physical. I can control it by not engaging in significant effort, either in activity or in speaking. Eventually though, it won't matter. Eventually, sooner rather than later, I will stop breathing.

Thursday, 8 December 2016

My Last Financial Asset

This is probably the latest blog entry I have written in a very long time. The reason is very simple; I've been busy and on the go since first getting up today. The busy and on the go has all been about making banking arrangements. I am changing where I bank as well as setting up a US funds deposit account.

I've had the same email address for 26 years, since 1990 or perhaps 1991, I can't remember for sure. It's been a very long time. I doubt there are many others who can say that they have had their internet address remain the same for as long. The reason for this is simple. I own the "RAMA.COM" domain. When you have an email address, the first part is your name, or identifier. The part after the "@" sign is the domain. Most of you have an address with Google or Microsoft or something like that. Their domain hosts your email account. I, one the other hand, have hosted my own email domain for all these many years. Until now.

My last remaining financial asset was RAMA.COM, the domain name. A few weeks ago one of my blog readers contacted me and offered to buy the domain from me. I declined. My feeling was that the domain name was only worth a couple of thousand dollars at best. I wanted to leave it for my son, as a reminder that I once was here. Then the contact made an offer a bit higher that what I expected.

At that point I decided to do my research. Ultimately I ended up listing the domain name with a domain broker, a fellow in Germany with a company called SEDO, who would auction off the domain name to the highest bidder. That auction completed this morning, and I found myself in the position of needing a US funds account for the transfer from Europe. I have decided to keep at least half the money in US dollars, a kind of travel fund for going south. The other half will be used to supplement my income over the next year or so.

I am not sure how long I will live. It may be a year, or two. I don't think it will be much longer. The pleasant thing is that this domain name sale will relieve me of some financial pressure during this time, adding enough to my bank balance that I will no longer be constantly short of money. The downside, and there is always a downside, is that I cannot leave this memento to my son, nor will I have my email address any longer.

This was my last financial asset. It has now been converted to cash so I can live. I'm not happy about that, but I am very happy to have the money.

Wednesday, 7 December 2016

Freezing, Below Freezing

I'm going across the street to the mall today, using my power wheelchair. That may not seem like much of an adventure, until you realize that the city of Calgary is in the midst of a cold snap. Only it's not so snappy. The icy freeze of the cold north rolled down onto our fair city on Sunday, with temperatures plummeting from +10C to -25C in just a couple of days. Unfortunately this weather front has settled upon us; it looks like it will be here for a week or two.

Right now the temperature outside is -19C. That's -2F, for those of you living in the only major nation in the world still using Fahrenheit, or one of the three other minor nations. The -19 Celcius isn't so bad until you factor in the wind chill. We are having a breezy few days this week, with the wind steadily at 9 km/h. That wind chill cools open skin even more, making the cold feel like its more along the lines of -28C.

It's cold. It's bloody cold. It's freezing cold. It's cold enough to make crossing the street in my power wheelchair a chilling, thrilling experience. Yet go I must. I have medications to pick up and letters to mail. Fortunately for me the biggest part will be getting across the street and parking lot. Market Mall has heating, and all the stores I want have entrances into the mall. All I have to do is make it to the closest entrance.

My biggest concern is the power wheelchair itself. I have never before taken it out into such cold temperatures. I don't know how the battery will be affected by the cold, nor how the operational gears will run in such cold temperatures. I don't want to get halfway there and have the thing freeze up. I could take my truck and park downstairs at the mall but that would mean having someone go with me, in which case I would just ask them to go instead of me.

I really don't want to go outside today.

Tuesday, 6 December 2016

Another Commode Chair

I've somehow managed to break yet another commode chair, in the same way as I broke the previous one. The bearing has slipped out of its pressure fit seat, leaving the axle free to extend and the wheel free to fall off. It did so while I was in the shower yesterday, or rather almost in the shower. As the wheelchair wheel slid off, the commode chair rested on the smaller inner wheels, so disaster did not befall me. The stress of the incident, however, convinced me that a shower was not necessary just right then.

The ALS Society of Alberta, in the person of Rob Lognon, my Client Coordinator, is delivering another commode chair to me today. This will be the third chair from the Society, or perhaps more likely the third wheel. The parts on these chairs are interchangeable. With the new wheel on the chair, I can retain the same chair, already adjusted to fit over my toilet seat such that my bidet spray works. This is important to me.

A fair bit of the equipment which makes my life functional comes from the ALS Society. My slings, the lift in my living room, my power chair, even the grabby stick I got on Saturday to replace the one I broke getting my cordless drill kit out of the cupboard last week. The ALS Society has provided me with temporary equipment, such as the hospital table I needed when I was ill last year, and longer term equipment such as the shower bench. Both of these items have been returned, there in the inventory for other PALS to use.

That's the great thing about the ALS Society. We all know I won't need this equipment for long, perhaps a couple or three years at best. We all know that others will come along who need it. This equipment is expensive. It consistently outlives the PALS using it. With the Society it gets handed along, sharing the expense amongst multiple recipients, saving me in the money from buying it, allowing me to spend more on meaningful things like food and wine.

My biggest concern these days is the financial viability of the ALS Society of Alberta. As with all these kinds of organizations, it runs on the knife's edge when it comes to money. You might the the Ice Bucket money was there, but all that money went directly into the research pool. Virtually none of it stay with the Society for local operations. So they are left with fundraising in a poor economy. It's a tough situation, yet still they provide me with equipment, advice, information, and, most importantly, hope. Hope for a cure, hope for a treatment, hope for quality of life.

Monday, 5 December 2016

No More Baby Powder

I'm tired. I just got up and already I am thinking I might go back to bed. Well, I didn't "just" get up. I got up a couple of hours ago, went to the bathroom, tried to have a shower, then did exercises, getting lessons on how to properly attach this stupid catheter. I did learn something important in the process, how to reduce the chances of disattachment such as happened on Saturday evening.

But first, that whole thing about trying to have a shower. I have a brand new commode chair. It would appear that the bolts holding the axle sleeve in place are a bit loose. This means the axle itself does not lock into place. This morning, while wheeling about to get into the shower, the right wheel, the one with the loose bolts, detached completely. Fortunately this new commode chair has small wheels on it as well so it can convert from self-propelled to a push chair. When the big wheel fell off, the small wheel was there to stop a calamity.

Nonetheless, I forwent the shower and opted for a hand wash of critical areas. During this process I discussed the condom catheter with my HCA. Kathy is an experienced woman, about my age, and has been doing Home Care for a decade or so. She's seen it all. As she washed and dried me, she talked about the way they were supposed to stick and options for making it stick on better. Then, as she went to apply creams, she skipped Baby Powder, telling me it would interfere with the glue that holds on the condom part.

That was my mistake on Saturday. After a thorough cleaning, I put Baby Powder on myself. It helps reduce the dampness and potential chafing. However that powder interfered with the glue, allowing my catheter to come loose right in the midst of dinner with David. Catheters don't come loose when they are idle; the explode off under pressure, as did mine. I uttered an expletive. David looked at the look on my face and laughed. He was amused. I was not amused.

Kathy stepped me through the proper method of attachment. She pointed out a couple of pitfalls and assured me I had the right size. She also explained that the green collar on the device was for protecting it before application, and could be disposed of. I did not need to wear that collar anyplace at all. She also suggested getting a blow dryer for my groin as a way of ensuring no moisture got into the glue that holds things in place.

So no more Baby Powder for me. I guess the expectation is that I will be dry anyways. And now I need to look for a blow dryer, but not one for my hair. Today I put on another of these monsters. Let's see how it goes.

Sunday, 4 December 2016

I Fell Off My Bed

I fell off my bed this morning. This was no soft slide sideways. This was a full on, force forward, body weight pitch to the front. Fortunately, thanks to an unusual conflation of circumstances, my manual wheelchair was in just the perfect position to block my fall, my head bouncing onto the armrest and my arms grabbing the wheel, luckily locked at the time, to hold myself into a seated jackknife position. Once steady, I slowly worked myself back into a vertical position with only a slight headache for a moment, and a pull on the soft tissue injury in my left shoulder, the one that just doesn't want to get better after the hotel tumble. One thing leads to another.

The reason for the fall is simple; Christmas. In order to get ready for Christmas decorations, I have moved my power wheelchair into my bedroom. It will come out once Christmas decorating is complete. Dion is coming over today to help with my Christmas lights. My hope is that Kate will come today and help me decorate my tree. Once that is done, the power wheelchair can go back into the living room.

With the power wheelchair in the bedroom, there is less room for my manual chair and my commode chair when I get up in the mornings. So what I have taken to doing is putting the manual chair beside my power chair, parked like cars in a lot, nose in towards my dresser. Then I can bring my commode chair close enough to transfer for morning needs. That is what I did this morning.

I got the commode chair, put the transfer board in place, then, using my left arm as a brace against the M-rail, I started to slide down the transfer board. Then my left arm buckled completely. My legs used to do that. Put under strain they would buckle. Now it's my arms. When my arm buckled, my hand came free of the M-rail. My head, hitting the armrest on my manual chair, gave me just enough pause for both hands to grab the manual wheelchair wheel. Fall arrested.

Now all I have to show for this effort is more soreness in my left shoulder. And a continuing mistrust of my own body. That's living with ALS.

Saturday, 3 December 2016

The Condom Conundrum

I've got a new excuse for tardiness in my life. "Sorry for being late. I had some trouble with my catheter." I tried it out for the first time yesterday, attaching it and setting it up with little difficulty. It works just fine. Of course it would work for me just fine; it's worked for millions of men before me. The manufacturer has had a long test cycle.

This morning, however, did not go so well.

To attach this piece of personal low technology to my body takes a bit of effort. First of all, there is the attachment of the condom catheter itself. As the name suggests, it fits over the penis like a condom. However the beast under attack is not all that cooperative. To use the medical term, it is flaccid. Like a child on the mall floor not wanting to cooperate, it simply plays the "I'll go limp" game and disrupts by default.

The design of the condom catheter is excellent, with a long, loose capture sleeve at the end of the portion which you must wrestle down a loose and floppy target. At first contact, the target retreats inwards, seeking the shelter of its natural resting place. So you kind of have to pull it out, long and skinny, and place the cap over your cap. Then you have to roll the condom portion down while attempt to retain some form of a grip over your pocket snake.

If you want to understand how this might be difficult, go try putting a regular condom over an non-erect penis. Sometimes it works perfectly. Other times it is a challenge. That is all I have to say about that.

The next step is attaching the tubing, a fairly simple process. The equipment is designed with the appropriate attachment ports and comes with the appropriate tubing. Once again the manufacturer has had many years to perfect this little tool for your tool. It all fits together well.

Finally you strap the bag at the end onto your lower leg. This might seem simple enough. It would be simple enough if I had control over my legs. To attach the bag with the included velcro straps, I have to lift my leg onto my bed. Unfortunately if I lift it to an angle and rest it on the bed, it slides off unless I can hold onto it. But I need two hands to attach the bag. If I lift my leg and lay it on the bed straight, turning my body sideways, I run the dual risk of falling sideways off the bed and of not being able to reach down to the lower strap, the one near my ankle.

What I finally did was both. I pulled my leg up in the angular position to strap on the lower part of the bag, trapping it in place with my M-rail. Then I stretched my leg out straight, once again using the M-rail as a brace and attached the upper strap. This, of course, all happened while switching my hands between doing the straps and balancing myself while sitting upright. It's a bit of a circus act.

All in all, this new device adds about 30 minutes to my dressing time, assuming I put it on first thing in the day. I can do it later in the day while sitting in my wheelchair; it takes about the same amount of time. This means my total waking and dressing time can now easily run into about 90 minutes if things go poorly, or be as short as 60 minutes if things go well. No wonder I am late today.

Now all I need to do is head out into the world and hope my bad job this morning doesn't result in wet pants later today. It's a risk. It's always a risk.

Friday, 2 December 2016

More Change

As I move further into this illness, as I get closer to the end of it all, I become more change resistant. I find myself not wanting anything different, anything new, or at least unexpected. It's fairly simple; there's a lot going on inside of me, a lot going on with my body. I don't need a lot going on outside of me, a lot going on in my life. I need stability and safety, not drama and change.

But I'm not necessarily right about this. While changes in my body are inevitable and inevitably bad, changes in my life don't have to be frightening. I just need time to get used to the idea.

My condom catheters arrived on Wednesday; that's right, Wednesday. I put them in the corner at the end of my dresser and left them there. I didn't touch them on Wednesday, nor on Thursday. I put the bag in the corner and continued to live with the mess of my daily life. We've seen this happen before, where a new thing is injected into my life and it takes a while for me to get up the courage to use it.

I finally tried, unsuccessfully, putting one of these things on last night. I failed miserably. You would think this would be a simple thing for me, but remember, this is not your typical prophylactic. It apparently takes some skill and practice to properly enclothe one's male member, aka penis, in one of these things. Today the bag remains in the corner; I will have to try again.

Then there was this morning, a new HCA arrived, with the supervisor. Michael, my regular HCA, has gone home to Nigeria for a couple of months, back to see his Mom and other family members. So in his stead, the agency and I have to train a new Home Care Aide. We don't have to teach her how to do her job in general; it's more about the specifics of caring for me.

This meant going through my whole routine this morning while explaining at each step of the way the reason and purpose for something. I find that if the HCA's know why they are doing something, they tend to be more diligent in doing it. It is another change, another day of finding dishes in the wrong place, another day of directing exercises.

It's probably the toughest thing to deal with these days, the instability of my life. There is very little consistency in things, while what I need most of all is that consistency. I need to feel safe, to feel cared for. I need to feel like I can trust my world to change as little as possible, while I know for a fact that my body is changing constantly. It's one of the things that I can hold on to.

Thursday, 1 December 2016

Cold And Snow

It's snowing today; not the real, icy kind of snow that will stay around, just another reminder from the Sky Gods that winter will soon be here in full force. The snow today is already disappearing. Too bad. I like the snow. I like the gentle covering it provides for the sharp edges of life, the sense of silence it gives to the world around me. I don't mind the cold so much. I must be a Northern spirit.

When I was a young teenager, nothing could have been further from this feeling. As a youngster, I hated the cold. It was a misery to me. I can still feel the chill of having to get up in the mornings, the house cold from the air outside, moisture from the snow and rain creeping into every part of me. Those mornings of chill misery started with having to go outside, further driving the icicles into me, so I could head into the dark, dank gloom of the basement where the ignominy called central heating lived in the devil's embodiment, a wood and coal furnace which perpetually resisted the process of being lit in the mornings, or, for that matter, of staying lit all evening.

That first heat of the day, getting the cold kindling and damp wood to burn, that was warmth. It was that same damp warmth which often flooded the kitchen and living room upstairs with wet smoke and the smell of half burned wood. Success with the hell-fire demon we called a furnace was achieved only with great battle and incredible patience.

I remember bringing wood in from the snow, in from the ice, wood encased in water frozen hard as a rock. I remember smashing at the woodpile, breaking logs loose from their winter binding, readying them to once again dampen the fire and drive more smoke upwards into our tiny house. While I was doing this task of misery, my siblings were enjoying a moment of warmth as my step-mother lit the oil stove in the kitchen. I was not the only one performing this task; my brothers will remember it as well. The odd thing is I don't really remember my Dad doing this, just us boys.

The cold of winter went from being miserable to enjoyable when I was able to see it from the warmth of the living room, from comfort looking through the front window out to the flakes settling slowly earthward. Once I had the option, not driven by the foul furnace necessity, I could sit, cuddled into a blanket, and see the beauty of it all. Then, slowly, I came, over time, to enjoy it both indoors and outdoors. The only thing, the thing which remains important right to this very moment, is having warmth as my settling point, to have a place pre-warmed, ready to take of the chill. And I don't have to light that God damned furnace anymore.