Wednesday, 20 September 2017

Tuesday's Excuse

I stayed in bed yesterday. I didn't even get up to write. Tuesdays in bed; it seems to be a consistent theme, or at least it's becoming a consistent theme for me. The weekends tell the tale. On Friday night I often have somone over, staying up late, hanging out. On Saturday it's fairly common for me to have some sort of event, either wine bottling, or wine making, or a potluck of some sort. Sometimes, rarely these days, I will go out on Saturday. Generally, though, Saturday night involves lots of wine and staying up late.

Sunday is my first day of rest. I will often take a long time to get out of bed on Sunday, the only reason for actual getting up involves some Protestant guilt about having a messy home or laundry that needs doing. I have learned that both can wait, notwithstanding my Grandmother's admonitions in my head. So often Sundays are either a late arrisal, or no arrisal at all.

Then comes Monday, probably my favourite day of the week thans to my HCA Kathy. She comes in and immediatly encourages me to sleep for another hour while she cleans. Then she makes sandwiches for me; by the time we are done it's no longer breakfast. It's well after 1:00 PM most days. So I've slept in a bit, I have food I like, and Kathy has me exercised and dressed. I usually get up.

Tuesday, however, is a different story. Kathy certainly comes in and does her stuff. Yet I know there are no exercises, no intent for me to shower, no sandwiches waiting. Now, to be sure, all the food Kathy makes for me is real food, good food. If hunger were a motivation, I would most certainly get up and eat. It is not; I don't feel hungry all that much most days. I do every once I an while, but mostly I eat because I know it's time to eat, and because someone has made something for me to eat.

So here I am, yesterday morning. Kathy walks in, takes one look at me, and says "You want to sleep, don't you?" I mumbled in the affirmative. She emptied my pee jugs, covered up my feet, and said she was off to make something for me to eat. If I wanted it, I would have to get up.

I didn't want it. I stayed in bed. All day. All night too. And now, finally, I am up. I've eaten. I'm having coffee. I ate breakfast cereal today. I guess that's it. I can go back to bed now.

Monday, 18 September 2017

Does It Matter Which Way You Put On Sweatpants?

Does it really matter which way you put on pants, particularly sweatpants. I know that anything with a zipper has a front and back that matter. I suspect that tight fitting things like leggings have a true front and back, especially if you are a woman with a curvy back end. You don't want all that backside fabric hanging off your front.

Then there are the more causual clothes; jogging pants, sweat pants, lounge pants, things which generally resemble pajamas. These pants seem to have no real differential in thier cut from front to rear other than any pocket slots not running parallel to the seams. This is a good thing for me, since putting on pants is such a challenge these days.

This morning Kathy, my HCA, dressed me, putting on some nice lounge pants and a nice pair of underwear. I was set for the day, except for about an hour later when I went to go pee and made a real mess of it. So I had to change. I reached down deep for the bottom drawer of my dresser and pulled out another pair of casual, lounge type pants. I grabbed another pair of underwear from the top drawer of my dresser. Then the real work began.

I used the sling to transfer onto the bed. Laying down is the only way I can dress myself these days without falling over. From that laying position I yarded and pulled, twisted and turned, grunted and rested, until I finally managed to get pant legs off of my legs. I bundled up the damp clothing and weakly threw it towards the clothes hamper. Next, putting pants on.

The way I do this is to lay the pants out over my legs, then put in one leg. I pull it all the way up, as high as I can go. It takes a lot of effort and time just to get one leg done. Then, I roll over, such as I can, and repeat the lengthy and tiring for the opposite leg. That's when I noticed it this morning, that stupid label that's supposed to be at the back of my pants. There it was, front and center. My pants were on backwards.

At that moment, I had two choices. I could take my pants off and start all over again, or I could just leave them the way they were, backwards. Hence the question. Does it really matter which way I wear these pants, frontwards or backwards? I can tell you this, from a wheelchair it makes no difference whatsoever. I could wear them backwards all day long and nobody would notice. If I was walking, it might make a difference. Then again, if I was walking, I wouldn't be so upset about redressing myself with pants on frontwards.

It's a heck of a lot of work, putting on pants. Today I wore mine backwards. I guess that answers the question.

Sunday, 17 September 2017

From A Real Person

I have no plans for today, or rather my plan is to do nothing today. I'm not totally sure if this will be the case; with not plans today, anything could happen. It certainly wouldn't hurt me to get out in my PWC for a bit, except that will wear me out for the day. On the other hand, so what? I have no plans, not even that afore mentioned plan to do nothing.

As it becomes increasingling difficult to lift and function, I become increasingly willing to allow myself to sit all day, write in my blog, read and post on Facebook, or watch something on Netflix. Note that all of these are not just passive things, but none of them have any form of direct human interaction. Sure we can chat on Facebook, but you are a thousand miles from me. If you are near me, then come visit. I need the human interaction.

Nevertheless, as weakness grows my world continues to shrink. I can still get in and out of my power wheelchair thanks to my sling. The challenge is handling whatever else comes along. It's even getting tiring to hold the joystick in one place while wheeling along. Grocery bags can be slung on the chair. Odds and ends can be put in the backpack, now permanently resident on my PWC. There there is the issue of the dreaded condom catheters. The task of putting the catheter on, without any other tasks, is enough to wear me down for an hour or two.

I like being online. My fingers still work, mostly. My arms rest on my wheelchair arms, my wrists holding them up by resting on my laptop. I like the numbers and variety of people I meed online. It fills this empty gap when I sit home alone, wishing my world was not getting smaller, wishing someone would come visit me. Being online provides me with input and interaction.

Being onliine is especially valued given the amount of time I spend alone, in solitude. While I have plenty of people around me, there still seem to be many times when I find myself alone, wishing someone was here, wishing someone would come share this time and space I have. Sure, I have online friends. But nothing beats a real hug, a real cuddle, from a real peson.

Saturday, 16 September 2017

Brownies For Sleeping

I'm starting to get this medical marijuana thing. There are so many varied effects of cannabis. I can understand why the medical community, or at least some of them, have an issue with medical marijuana. You can't just stay "take this pill and this will happen". It's more like going down the rabbit hole and finding a bottle that says "Drink Me". You don't know for sure what will happen, but you are pretty sure it's going to be good.

Sleep is a good example. Eating a brownie two hours before bed, one that packs a real punch, almost guarantees a solid night of sleep. It doesn't mean it's easier getting to sleep, although it often is, especially if the brownie is really good. What it means is that once I am asleep, I stay that way. It's similar to the Zopiclone but without the vivid, weird dreams. So taking a strong brownie means no sleeping pills. You can see that but the unused sleeping pills on my dresser.

Another well known effect of marijuana is appetite. I have to say that doesn't work for me the way one might expect. In the early effect stages, perhaps an hour or so after ingesting, I acutally feel nauseous. I don't want to eat. When that wears off, as much as it does, I don't get hungry again. What happens is that I can eat, endlessly. I don't think about eating, but when food appears I am ready for it.

Then there is the downside, the constant feeling of being on the edge of being high, a feeling that lasts as much as 48 hours. I have this sense of ease about me, where I see things but don't react to them, where my hearing in my working ear seems enhanced, where I am sleepy but not tired. On the other hand, it's also where my brain feels only marginally connected to my body. Well, perhaps this isn't a downside. Perhaps this is how it is supposed to work.

I will keep eating the brownies at night. I'm not so sure about the recommended cookie during the day. Being high makes it a challenge to be a good host, unless your guests are high too. At night time, however, getting that deep, relaxed sleep is worth being a little buzzed the next morning. So now, thanks to ALS, I am a drunken, pot-smoking, spaced out something or other. I can take it.

Friday, 15 September 2017

Rescue Me

I had to be rescued today.

I thought I had everything under control. I was safe in bed, wanting to get up. All I had to do was slide the sling over to my bed, shimmy it underneath myself, and lift myself up. Unfortunately, as I twisted to get the sling, my leg fell out of bed, my left leg. As it slid off the bed, bouncing over the bedframe, it lodged my foot under the wheel of my wheelchair. That left me unable to sit up or shimmy over the sling in any way at all.

My foot was only lightly jammed. For any normal person, it would have been no problem at all to lift their leg up and out. Only my legs don't lift anymore. They haven't for a long time. Up until recently I could lift my legs up, individually, with my arms. So even without leg power, a short time ago I simply would have grabbed my leg and lifted it. Alas, now that my arms are in full and rapid decline, I can't even do that anymore.

Now the first question some might ask is where HomeCare was in all of this. Well, Home Care Aides were both the assistants in authoring this misfortune, and the angels coming to the rescue. Early this morning, ahead of schedule, Edith arrived. She is not my favourite HCA, but that doesn't really matter. What matters is she was early and immediately told me she was in a hurry. I knew what that meant. No exercises for sure. Rushed shower time. Rushed dressing time. No breakfast. That's just the way it is with Edith; she is on-call for coverage, on salary with CBI HomeCare, and always overbooked.

When Edith arrived, I looked at my clock. It said 9:15 AM. That may not seem early to you, but for me it is barely past sunrise as far as I am concerned. I considered what was happening and told Edith I would stay in bed. What I forgot to ask is for her to get me dressed enough that I could get up on my own, and to position the sling underneath me so I would be able to get up easily. I was not fully functional; I was not yet awake enough to contemplate future needs.

This whole gettting up and dressed is something I can no longer do on my own. So when I want to sleep in, or sleep longer, or just stay in bed for the day, I still get up to go to the bathroom, take my pills, and get dressed. Then I get back into bed, on the sling, and while away my hours. What that means is when I finally do want to get up, if at all, I just have to sling myself into my manual wheelchair, something I can still do on my own.

This morning that whole process fell apart. I found myself in bed, waking up at around 2:00 PM, with no clothes on and no sling. So, I tried to get up. That's how my day began. Needing rescue.

Thursday, 14 September 2017

Laundry And Pictures

I didn't write yesterday. I slept instead, something that is happening more and more.

My hall must be getting longer. I am exhausted from rolling down to the laundry room and back. My laundry is getting heavier too. I notice how hard it is to pick up each piece and put it in the washing machine. This difficulty makes me reluctant to do laundry. When I leave it for a few days, instead of one or two loads, I have four. That takes even more out of me. No matter what I do, my laundry days are coming to an end.

Today, fortunately, Jade is here helping with the work. Still, I have my part to do. Having someone here doesn't mean I can offload all my chores, although if it were up to Jade, I would certainly be sitting and doing nothing, just resting. Travis too. He's in the kitchen cooking up a storm. He got the ham out of the freezer last night in preparation for dinner tonight. We have already discussed preparation approaches. I think I might just leave this up to him. Once again, having help is wonderful. Once again I have to convince myself to accept it, or ask for it.

Travis and Jade are also helping me with my picture frames. I've had these frames sitting for quite some time, waiting for me to have the energy and enthusiasm to put pictures in them, to hang them on the wall. Travis got busy and hung the frames. They look odd with the stock pictures, so I am near compelled to choose pictures, setting up pictures of my children, grandchildren, and my own life. Once again, having someone here to help made it worth doing, and easier to get done.

Now I get to rest for a bit. The first loads of laundry are in the machines. The pictures of my grandchildren are in the frame and on the wall. The pictures of my life are set up, with the frame waiting to be hung on the wall once Travis is finished making breakfast. The only remaining challenge is the frame with pictures of my children. Carla refuses to give me any, so I am having to make do with what I have. No matter, I have enough to remind me of what a great time I've had as a Dad, and how much I love my kids. That's all that really matters.

Tuesday, 12 September 2017

Swinging In The Sling

I am up and out of bed. It only took me an hour. It's not that Home Care didn't come. Kathy was here, earlier. I just didn't want to get out of bed. So instead she put socks and underwear on me, positioned the sling so I could get out of bed, and let me sleep. I slept another couple of hours, then started the labourious process of getting myself up.

First comes the sling. This is getting increasingly difficult for me, especially when it comes to the part of the sling which goes between my legs. I can barely reach down to get the straps now that it takes so much for me to sit up. Instead I now use the grabby stick to grab at the unseen, occasionally surprising myself with where the grabby part of that stick ends up. Usually, after a couple of random grabs, I get a strap. Fortunately the straps are typically close together, so once I have one, I have the other.

Now I am ready to attach the sling to the lift. Remember that as I do all of this, I remain flat on my back, at best flopping over from sit to side by grabbing the M-rails I now have on both sides of my bed. There is no sitting up, although I can slant a little upwards on my elbow with some extreme effort. Nonetheless, the lift itself comes right down onto my belly, so attaching the straps is fairly simple, except that I have to hold my now weakened arms up in the air to do the attachment. Yet, I do it.

Now that I am in the sling, the lift process is fairly easy. I push a button. I go up. I push a different button. I go down. The difficult part is the sideways motion needed to move myself from bed to chair. On a regular basis the lift in the sling will leave me in a place where my arms have nothing to grab, no way to propel myself sideways. The solution to this is to lower myself to where my arms can touch my bed, to where I can grab a sheet to pull myself. The only issue is that this lower position often involves my rear in light contact with the bed as well, creating drag as I drag myself into place.

Having done all of the above, I find myself in mid-air next to my bed. Now I begin groping for the appropriate chair, hoping that it's in a position for an easy grab. Sometimes it is, sometimes it isn't. This morning, for example, my wheelchair had rolled just out of my reach. In order to get it, I had to lower myself to the floor, fall over towards the chair, pull it to a point where I had a hand hold, then lift myself up with the sling again to where I could get into the chair.

In some ways its kind of fun, flying back and forth across my room in the sling, held aloft by the lift. I feel like Baron Harkonnen of Dune, with his insane ceiling traversing sling designed to hold his massive bulk, able to pull heart plugs out of those who had fallen out of favour. You see, even though this process can be tedious and difficult, I can still have fun in my mind.

Of course, that's the deal with ALS, isn't it? My mind is sharp, my imagination fully functioning, my awareness of both irony and joy complete. The kids see my sling and lift as a fun ride. Once I am in it, I try to do that too. Then, alas, I must return once again to my reality, into my wheelchair, slung no more. Or maybe not. Maybe one day I should do what the kids do, and sit in my sling, swinging away, for an hour, maybe two, forgetting that my reality awaits on wheels below. Maybe, just maybe.

Monday, 11 September 2017

I Need A New GP

I've been having some issues with my Family Doctor across the street. I've already written about these issues. Lately I have been casting about, looking for another doctor, although I have taken no action in that direction. I was hoping things might settle down and I might work things out with my current doctor. Changing horses in mid-race is never a good idea. Right now, as I move towards needing a doctor to provide MAID sometime in the not too distant future, stability in my health care situation is important.

Unfortunately, stability will not be. I called my doctor's office this morning to make an appointment. I was politely informed that my current doctor has declined to offer me any further appointments or any further care. The requirements for a person with ALS are more than he feels he is able to provide from within the confines of an outpatient situation. In other words, working with me is too much work.

I get it. Prescription renewals over the phone generate little to no revenue. Visits with me can be more complicated thanks to wheelchair access, special medical needs, and now the added weight of MAID. For some doctors, it's just too much work for too little money. He has an expensive office and undoubtedly lots of bills. Having me as a patient simply did not add positively to his business mix.

It's kind of okay in some ways. It certainly forces my hand in terms of gettting a new doctor. The ALS clinic wants me to have some form of GP coverage, to handle non-neurological issues like bladder infections and blood pressure medications. Of course I would not need help with any of this stuff were in not for ALS. The bladder infections are from my catheter. My catheter is because my legs don't work. My legs don't work because of ALS. My various heart medications would be easy to refill were it not for my lack of mobility, that lack thanks to ALS.

Most of the challenges in my life these days relate to dealing with ALS. My emotional challenges, my physical challenges, all of these are made much worse, much less manageable thanks to ALS. Let's hope my next doctor realizes it in a kinder way than my last. Now, off to find another GP.

Sunday, 10 September 2017

A Potluck Funeral

I'm going to meet someone for coffee, someone I met online. This is a scary business, meeting new people at this stage in my progression. I have to ask myself why I am doing this, why I am even bothering to meet people. Here I am one day making end of life plans, and then the next day making plans for a date. What I think it shows is that planning for things to come doesn't mean life today has to end. After all, I'm still alive today. I want one more kick a the cat, one more chance at seduction.

This whole end of life planning has been going on for a while with me. Part of it has been the disposal process, getting rid of things I neither want nor need, things that are taking up space in my home without adding value to my life. It makes sense to lighten the load so that when the time comes, there's a lot less for my brother Peter to deal with. Why should he had to get rid of my extra, unneeded furniture when there are those around me who can make good use of it? Why should he have to throw away all my clothes when there are those around me who would like some of it, and in the end there is a GoodWill bin across the street at the mall.

The next big step in the death planning process is to identify a funeral home and pre-pay for my cremation. I don't have the money for a fancy funeral, nor does it seem a good use of money in my mind. Better to take that money, rent a hall and throw a giant party with the wine and food I leave behind. After all, I plan on dying with a full fridge, a full pantry, a full freezer, a full liquor cabinet, and a full wine rack. It will be interesting to see how successful I am in that plan.

Over the next few days I will contact several funeral homes. Of course they will all want me to come in, so they can try to upsell me to the best casket on the floor. It will likely change their approach when I tell them I have ALS and have spent all my money trying to live, rather than worrying about what happens after I die. Still, there are costs associated with dying. Better to have a plan for them in advance.

After that comes the fun part, arranging my post-mortem party. Since I don't know for sure when I am going to die, notwithstanding having MAID plans, I can't do too much on that front. For that, I will depend on Peter. I'm pretty sure he knows how to throw a party, especially with all the food and drink supplied. Anything missing can be brought by others. Imaging that. A Potluck funeral.

Saturday, 9 September 2017


I have been thinking for a couple of days as to whether or not I should write this post. What I am about to say will create some consternation for some, upset others, and find complete understanding and agreement with some of you. In the end, this is my story, and this part of it is an important turning point.

I contacted the Alberta Health Services Medical Assistance In Dying program on Thursday. I let them know who I was, where I was, and that I would like to talk to them. Before I go any further, there is a process here, and you can't simply call them up and say "I want to die." Here are the criterion for MAID, just to start the proces rolling.

241.2 (1) A person may receive medical assistance in dying only if they meet all of the following criteria:
a) they are eligible — or, but for any applicable minimum period of residence or waiting
period, would be eligible — for health services funded by a government in Canada;
b) they are at least 18 years of age and capable of making decisions with respect to their
c) they have a grievous and irremediable medical condition;
d) they have made a voluntary request for medical assistance in dying that, in particular, was
not made as a result of external pressure; and
e) they give informed consent to receive medical assistance in dying after having been
informed of the means that are available to relieve their suffering, including palliative care.

(2) A person has a grievous and irremediable medical condition only if they meet all of the following
a) they have a serious and incurable illness, disease or disability;
b) they are in an advanced state of irreversible decline in capability;
c) that illness, disease or disability or that state of decline causes them enduring physical or
psychological suffering that is intolerable to them and that cannot be relieved under
conditions that they consider acceptable; and
d) their natural death has become reasonably foreseeable, taking into account all of their
medical circumstances, without a prognosis necessarily having been made as to the specific
length of time that they have remaining.

In short, I most certainly qualify, even in my current state, let alone when the time comes. Even that doesn't mean I can just ask for the big pill. I have to go through two separate assessments, with two separate physicians. Then, even after all that, a third physician will talk me through the process to confirm that this is what I really want. It's not easy to die with medical help; a well planned suicide is actually easier. I'm just afraid of screwing it up.

Simple starting this process does not mean I want to finish it any time soon. The assessment will leave me in a place where I have up to a year to act on it. With that out of the way, it will be one less hurdle when the time comes. I want to make this easier for myself, not more difficult. I am in no hurry, but when that day dawns, I don't want to start a lengthy process right then. I want the process out of the way so I can get on with it.

There will be some of you who will tell me it is a sin to take my own life. I'm not. ALS took my life a long time ago. I've already outlived most pALS in my cohort. I do not want to live on machines, at least not the way I feel today. I don't know if that will change, but this process allows me to change my mind right up to the last minute.

There will be some who question my timing, as if any time was too soon, and certainly this time is too soon. All I can say is you do not live the life I life. You do not suffer as I suffer, or feel the pain I feel. This is a planning step, not an action step. I'm getting ready to die, just as most of you will do at some point in your life.

If you are one of those who feels that life is sacred, I would disagree. If life was so sacred, why does God allow so many people to die in such horrible ways? There is nothing sacred about disease, disaster, dementia, and so many other ways to die. Death is not dignified, let alone sacred. Furthermore, I am not ending my own life. ALS is doing that for me, has already done that for me. I am just doing what doctors do for a great many of their patients. When the time comes, I will simply expedite matters. Nothing, nothing at all, will stop my slow, creeping death. All I want, when the time comes, is to expedite what God has done to me already.

If you ask about God's plan for my life, I ask you this in return. What if God's plan for my life is to leave it in as dignified a manner as possible using MAID? Perhaps God wants me to show others that life is for the living, that dying is a process which need not be long, drawn-out, and ugly. Perhaps God wants me to pave the way. And in truth, if Heaven is such a wonderful place, why delay?

In the end, the key here is to remember that this is preparation. People who prepare for their own funeral are lauded. Mortuaries run TV commercials encouraging preparation. That's what I am doing, preparing. How it works out is in the future. That is yet to come.

Friday, 8 September 2017

It's The Drugs, Man

I ate breakfast today, poached eggs on toast with a bit of cheese and tomato along with a pan-fried chicken leg nicely spiced. It was a good breakfast, and it was the first time I've felt really hungry in a few days, the first time I've actually felt like eating, seeing it as a pleasure rather than as a requirement.

You see, I've been battling this low grade bladder infection for a few days know. Yesterday it started to heat up, the night before being one where I was up every hour to go pee, plus I soiled another pair of pants by peeing in my sleep. This excessive urination is a sure sign of a mild bladder infection. Along with excess urination, I was tired, more than normally tired, even after a full day in bed. Then, yesterday afternoon, I started to develop a fever. This one was going to be a problem.

I'm very good at diagnosing these bladder infections myself; I've had enough of them. Quite possibly it could be one of these nasty bugs that takes me out in the end. For now, I have something called "Monurol". It's actually fosfomycin tromethamine, a synthetic, broad spectrum, bactericidal antibiotic. I mix a pouch of this stuff up, which they have kindly flavoured orange, and drink it down in a half cup of water. Then, in a matter of hours, it starts killing off the nasty bugs.

Last night I slept well. I was not up every hour to go pee. I did not soil the bed or myself. This morning I woke up actually feeling like I might get out of bed. I wanted breakfast. I am still hungry after a very good breakfast. I will likely eat more of that fried chicken today. So, I would say the Monurol did its job.

Now, if only the rest of my medications worked as rapidly and as well. Maybe my body would start to get better. I know. I'm only dreaming. It's the drugs, man.

Thursday, 7 September 2017

I Can Still Breathe

I slept yesterday, all day. I got up in the morning to go to the bathroom. I took my pills. My HCA dressed me. Then I went back into bed and stayed there until just a few minutes ago. Yet here I am, still sleepy. It seems that sleep is my greatest need these days. I didn't eat yesterday, and didn't mind it. I didn't have anything to drink yesterday, yet I still peed about 2 litres. I did no exercises, no movements, nothing. So why am I tired right now?

Maybe I am fighting an infection. Maybe this is just ALS having its way with me. I can't tell. Nobody can tell for sure. I can get tested for an infection but often the tests don't pick up the minor infections that can make me feel like this. It has to get serious enough to where I have a fever before it really shows up in blood and urine tests. Then again, the weakness that I feel is another part of the disease, so maybe that's it.

The problem here is the minor nature of change with ALS. This can happen, then sort of settle down, then happen a bit more, and so on and so on, until a significant event happens to prove the process. For example, I noticed yesterday that my arm seemed heavy, that lifting a pillow across the bed was very difficult. I've noticed the creeping weakness in my arms for a while, a couple of years really, and now it is truly noticeable.

So when I say I notice that I am having jaw issues, this is not a simple perception. I noticed on Monday that I had trouble opening my mouth wide enough to eat a sandwich. It was not a particularly large sandwich. My jaw just isn't as strong as it used to be. Lots of people might dismiss this, saying I always bite off too much, or maybe I was just tired, or that happens to all of us once in a while. What doesn't happen to all of us is the daily incrementalism of ALS. Soon my mouth won't open wide enough for food, my arms won't be strong enough to life themselves let alone a fork full of food or a pillow. Soon I will lose the ability to drink a sip of water.

Until then, I will eat what I can, drink what I can, and hope this exhaustion passes at some point today. That's as good as it gets. At least I can still breathe.

Tuesday, 5 September 2017

Alfred Hitchcock

Terror is often accompanied by suspense in the unfolding of a thrilling narrative - or, to put it another way, a story which gives the reader a feeling of terror necessarily contains a certain measure of suspense. Alfred Hitchcock

Alfred Hitchcock knew how to scare people. The famous movie and TV director knew what it took to get people sufficiently engaged in a story, how to twist that engagement into fear and even terror at times. He admitted himself that this was forte, telling Newsweek back in 1956, "If I made Cinderella, the audience would immediately be looking for a body in the coach."

The way he famously built terror and fear into his movies was to build suspension, tension between a known, terrible outcome and the time left to prevent it. He knew that the ticking of the time bomb, the knowledge of where the knife was hidden, or the man behind the door were all more frightening if you could build suspense and fear.

What was not frightening, after the initial event and certainly not over time, was the even itself. The bomb goes boom. The knife slashes. The killer pounces. All of those things happen quickly, and only once. However the clock, the knife, the killer, all these things held as a threat, as a future possibility, as an intended outcome, all build fear and suspense until the climax. He himself once said, "There is no terror in the bang, only in the anticipation of it."

I am, more and more these days, anticipating the end of my life. There is no terror in death, only in the anticipation of it. I am not afraid of being dead. It's the slow, agonizing process taking bits and bits more each day that is truly frightening. It's inside my head now, constantly, that one of these days the losses will reach a point where I simply cannot survive them. The question that drives the terror is "How long?" and, perhaps more importantly, "What will I go through to get there?"

This is not just fear. Living like this is its own horror film, it's own suspense, it's own kind of terror. I'm feeling like my life is directed by Alfred Hitchcock, that he is making each downward change in my body a kind of link in the chain, a link inevitably leading to death. I am not sure what is worse, the destination or the journey. Personally, I don't like this movie. I'd like to leave the theatre but I can't. I am the star of the show.

Monday, 4 September 2017


Peter is gone. Kathy, my HCA, is finished and gone. It sure is quiet around here when everyone is gone, except me. I'm not sure I like that quiet. I like the sound of people around me. I like the feel of others sharing my space and home. It feels safe, like a comforter wrapped round me on a cold day. It feels warm, even though the temperature is unchanged in any way. I like having someone near me.

Of course the downside to all this extroversion and requirement for people is that my life doesn't work that way these days. I am alone most of the time. Sure, there are frequently guests in my home. Sure, I have Home Care every morning. It's the gaps in between, and there are many of them, where the quiet solitude becomes truly apparent.

I admit there are days when I like this, when I need a rest from the commotion of day to day livng. Today is not one of those days. Fortunately Todd and Jessica will be here shortly, helping me fix my Kuerig problem. They are bring theirs over and swapping it with mine. Todd thinks he can fix it. That would be good. What's better is that they will come and visit. They will spend time with me. They will help with things around my apartment. It will be noisy again.

They will leave after they are done. The quietude will once again descend.  I will be alone. Again. I can live with this, on occasion even enjoy it. In the end, however, I like people. I like having them here. Especially when there is a close bond, like my bond with Peter, like my bond with my good friends. After they leave, I will probably sleep. That's what life is like now.

It's getting more difficult for me these days, tougher to keep going, more challenging to get out of bed and stay up for the day. I am getting more difficult, too. I have less strength, less energy, less will to do things. I have a shorter string, an earlier snapping point, a greater emotional response to things which truly mean nothing. It's all of apiece, this disease, this need for help, this want of companionship. I wish it wasn't this way. But it is.

Sunday, 3 September 2017

Nightmare Nap

Zopliclone makes for nightmares. It's one of the known effects of the drug. It can also cause an intense, deep sleep, so dense that you don't wake up even for the most common of things, like going pee. This all becomes more powerful when your body is tired while your mind is not ready to sleep yet, like last night.

I went to be at around 9:30 PM, and couldn't sleep. I was exhausted from drink and lack of sleep on Friday night. Yet there was no rest for the wicked. So I tooke the pill. It took about an hour to cut in. From then on I knew of nothing, no dreams, no nightmares, nothing, until about 10:45 AM on Saturday morning.

Fortunatel Home Care was a bit late, so I was awake when Edith got here. I was also wet. I had slept right through going pee at some point in the night. Fortunately I take precautions for this. The damage was limited; a wet towel and a little dampness on my sheets. I can always wash the sheets and towels, so no worries.

Edith arrived, got me up, toileted, and dressed. Peter made breakfast. I enjoyed. But by 2:00 PM I was tired again. So off I went for a nap. This is when the nightmares came in. They were both very frightening, involving life and death, mostly my death. There is kind of a theme in all my dreams and nightmares these days, a theme where I am at risk of dying. Sometimes I wake up just as death arrives.

When I did wake up, at about 4:30 PM, I came out to Peter having a great time watching "Big Trouble In Little China", an absolute classic, with Kurt Russell talking like John Wayne, and tons of Chinese stereotyping. The first thing he said to me was "You were having yourself quite the nightmare." Apparently I was calling out in my sleep.

Needless to say, the nap was not highly effective. I slept, such as it was. But I am still very tired. Tonight will be another early night. It takes so much these days to recover from exertion. It's a combination of age and ALS, plus perhaps the odd nightmare.

Saturday, 2 September 2017


So, my brother Peter is here this weekend. I know this because there is an empty bottle of 12 year old Bowmore Single Malt Scotch Whisky sitting in front of me. Oh, and also because I am in a very good mood today. I get that way when my brothers are around. I love having them visit.

I am very fortunate to have a tremendous group of people around me these days, brothers included. I have them, my friends, over to visit, to share meals, to share wine, all the time. But there is nothing quite like the history, the shared experiences, the shared misery of our younger years. I simply need to whisper about chickens and Peter shivers as I do. We can talk about life experiences, like travel or adventure, and know, understand, feel the same things in different ways.

It's true that I have had a terrific few years. Thanks to David, Cheryl, Katherine, Ricky, Mike, and so many others, I have had adventures galore. Most recently it was Ireland and Scotland. Before that it was down to my brother Adam's place. Last year it was road tripping with Katherine. And so on. But the best times are when my brothers come to visit me. I'm not sure what it is, but it makes me happy.

Even better, my brother Jim is on his way here today. He will stay the night; at least I hope he will. We'll talk, remember our childhood, think about where we came from, about where we are now. Perhaps Pete and Jim will go out to Karaoke. I will not. These days going out is too much of a hassle for me. I'll stay home, awaiting their return. I don't mind. I am happy that they get time together too.

Then, suddenly, it will be tomorrow. Today will have gone, leaving only the memory. This is how life works. You live. You experience. Time passes. you remember. In the end, that is all we have, today and memories.Not a bad deal when you think about it. Today is as good as we make it. Memories are that way too, as good as we make them.

Friday, 1 September 2017

I Am A Mutant

Okay, I've been writing a lot of dark stuff lately. So how about this instead?

I was thinking about myself. I know. How rare is that? I was thinking about what I am. I am a mutant. Or at least I have a mutant gene. That's the focus of much of the research in ALS. Gene therapy, stem cells, genetic regeneration; lots of it. So, if ALS has a genetic component, and I have the mutant gene that triggers ALS, then I must be a mutant.

Then I began thinking about other mutants, the whole X-Men thing. I got one of the useless mutations. I bet there are all kinds of nonX-Men with useless mutations. So what if I grow an extra set of teeth? Who cares if my lungs cystify and kill me? Oh, and what about ALS? What good is this as a mutation? Why couldn't I get a mutation like super strength, or the ability to levitate?

Anyways... Here I am thinking about the Marvel Universe and the X-Men. Then I think to myself, how sexist is this!! X-MEN! When one of the original five was female, and now all those mutants are out there who are female. Can they ever be X-MEN? No!! That is so sexist, so unfair!

What we need to do is rise up, as one body, and demand that Marvel change the name of that whole thing to something more genderly inclusive. Maybe something like X-People, or maybe even Mutant-X. Sure it's been used, but it could probably be purchased as intellectual property for a bargain basement price.

Oh, then we could go after them about their stupid diminutive naming for so many of their female characters! For example, in the origin story about X-Men, there were Angel, Beast, Cyclops, Iceman, and Marvel Girl. Really! The first four sound dangerous, sketchy, out there. Then we have this little girl tagging up the team. Jean Grey is really radical, so much more powerful that any of those animalistic men.

Super Girl! Where the heck is Superwoman? At best she is the anti-hero of Wonder Woman living in a parallel universe. At worst, one of many comic characters who assumed that title, mostly for nefarious purposes. You see, it's not just Marvel, it's DC too, doing it at their best, or second best as it may be.

It's time for feminism to strike at the heart of all 10 year old boys, or those who have the passions of 10 year old boys! It's time to equalize presentation of women as heroes. It's time to eliminate the de-humanized, terror stricken look normally portrayed by frightened women in the comics! It's time to stop using boobs as the main attraction of female characters!