Tuesday, 23 January 2018

No Blog, Sort Of

Today is not a good day for a blog post. I really have nothing to say.

Monday, 22 January 2018

Giving Time And Ability

It's 1:00 PM. I'm up. I'm dressed. I've already gotten several small chores done thanks to the help of Kathy, my Monday and Tuesday morning HCA. It would normally be a Range of Motion exercise morning but I asked Kathy if she would be willing to help me with a few things around the apartment which were bugging my, and which also were getting in the way of me doing more for myself.

There are so many areas where this is true, where I can do a part of something, but only if someone else helps me with another part. I can still make a lovely meal, but it works so much better when someone helps me, especially with the side dishes. Want a great lamb roast? Help me with the potatoes. Want Salmon in Hollandiase? Give me a hand with the sauce and asparagus. There are all kinds of cooking example, but there are life examples too. I can tidy the living room, except I can't move the couch anymore, not even with my wheelchair. I can do laundry, but it sure goes easier when there is someone to help with the back and forth. I can even fold laundry, except for the large sheets and towels.

There are a lot of exceptions to the things I can do, more and more coming each day. I've recently discovered I am not strong enough to use the corker to cork my wine. I can still do labels, and even some of the other manual tasks. I can prepare bottles, even so far as to spritzing them with disinfectant. Filling them? I don't think so, not anymore. Maybe though, if I got out of my wheelchair and onto the floor.

These exceptions follow me into shopping, where I can get "almost" everything off the shelves. I need help with things too high up, or behind heavy freezer doors. In most stores there are aisles too thin for a wheelchair. I have to ask for help if there is something there I need.

These obstacles and exceptions are a simply reality of my life. There is little to be done about them. It's just the way it is. I have to live with them, should I choose to live at all. They upset me. It makes a great deal of difference when someone, without question or judgement, helps me so that I can get on with my life, such as it is. That's the biggest thing you can do for someone with ALS or something similar. Give them a bit of your time, where you help with whatever it is they need, without judgement or interference. What you are doing is giving me back something I've lost, my ability to complete a task.

Sunday, 21 January 2018

Sometimes The Anger Gets Out

I've been struggling with my emotions the last few day, fighting off the sadness and sorrow, only to have to deal with the deep underlying anger and bitterness that lives within my inner darkness. Of course these emotions can only live if I feed them, and can only rise to the surface if I allow it. Yet they are there, unfed as much as I can, a seething pot, boiling in my emotional depths.

Personally I think I have done a pretty good job at living with ALS. I've managed to accept the constant changes, although not with some complaining now and again. I think I have reason to complain, but it doesn't really help that much. Notwithstanding all that, I am mostly a happy and cheerful person, ready for a challenge, excited to be with others. While that cheeriness is a front sometimes, I really am a mostly happy, upbeat person.

Unfortunately there are times when the anger comes out, sneaking out like the steam burst from an over-boiling pot. I would like to say I can control it, but I cannot. I am just not strong enough sometimes to keep the anger at bay. In these moments I can say things, do things, which I will ultimately regret. I do not excuse myself; ALS doesn't give me the right to be an asshole. All I can do is apologize when it happens.

Right now I can feel the emotional cloud lifting. My friend Andrea came over for a visit. We talked, each of us, about how things are going in our lives. I got to explain, or more correctly, to express how these negative emotions get to me sometimes, rising to the surface, taking all my emotional goodwill and replacing it with ill will. These moments pass. I can put the anger and bitterness back on the shelf, leaving it there for as long as I can.

The sadness and sorrow never really go away, no matter how happy I might seem. These are the real emotions I battle moment by moment. This duo of darkness can be held at bay, and often are so, by the love, care, and emotional support of others. To be touched by a human hand, to be held in a human heart, this clears the darkness, letting the joy of living return, letting me be happy again.

Saturday, 20 January 2018

So Canadian

Why am I crying? Or rather, why was I crying? The tears are gone. All that remains is the small residue at the corners of my eyes awaiting a tissue to wipe it away.

I cried because of something I read, a story about the passing of another pALS. Of course I could read these daily if I wanted. Just in Canada alone there are roughly 3,000 pALS and a third of them die each year. There are constant reminders in the ALS groups on Facebook that this is indeed a terminal disease. It was in on of these I found the story that made me cry.

It was the usual story. A man in his early 60's who struggled with the disease for a few years, then passed from a respiratory infection. It sounded all too familiar, with the bits about loving family, children and grandchildren who will miss him. Then it got to the part where his wife, the author of the post, talked about how she would miss him, and how difficult it had been to care for him in the last few years.

She talked about how she had turned from wife to nurse, and how distressed she was that in his last days she had to take him to hospital, even though he did not want to go. At the end, he was as emphatic as he could be, what with his inability to speak clearly or loudly, that he did not want to be intubated or given oxygen. It was her last gift to him, to let him die. Then she spoke of relief.

Then I cried. I did not cry for her or him. I am far too selfish for that. I cried for myself, imagining what might happen to me in those days, wondering who would care for me when that time came. I thought a lot about being alone in those moments, having to make my voice heard to someone who really didn't care about me, a nurse in a hurry, pressured to get to other patients. This is why I want to die at home, alone as I will likely be, as I want to be.

I don't know who will be there when it all comes crashing down. I doubt that there will be anyone writing heartfelt posts in the ALS group; none of my family or friends has joined those groups so they won't be able to post. I sometimes wonder if there will be any heartfelt feelings at all when I pass. Have I worn them all out in the voyage? Will they be so relieved that it is over they have nothing left to say?

This is a difficult disease in so many ways. One of the worst is knowing what is coming, at the same time as not knowing what is coming. I know I am terminal. I know I will die. I can even describe, with some degree of accuracy, what I will go through before I get there. What I don't know is the damage I am doing along the way. I can guess, but most of us keep those kinds of things in our hearts, not on our sleeves.

I know I have hurt people. I'm sorry, more than you can know. I know I have become dependent on people. I wish it were not so, but there is so little I can do other than get through this. I know that there are people who care about me, so many. Yet even so, I know that caring is difficult with someone taking the slow train to its last station, someone as demanding and difficult as I am. I wish it were faster, more deterministic. At least that way people around me could have some true sense of an end coming, a chance for rest and relief. At least that's how I feel.

I want people to say nice things about me after I am dead. Even more, I want people to feel those things while I am still here, to feel the burden lifted. Once I die, it won't matter to me. But it will always matter to those who love me. I am sorry I must die. I am even more sorry that the end of my life is such a drawn out process, such a difficult time. I'm just sorry. So Canadian of me.

Friday, 19 January 2018

To Make Wine, Or Not To Make Wine

"To be, or not to be; that is the question." William Shakespeare, Hamlet, Act III, Scene 1

I doubt that I shall ever write such prose, so powerful and poignant in so few words, to contemplate the existential, to wonder at suicide as I do daily now, in so few words. That is the art of versification writ with a fine point. It poses such a fundamental question, especially for those in a situation like mine, one becoming ever more significant as my arms weaken and my breathing retreats.

Yet not all my life is based on the existential. Whether I live or die is perhaps the least of question I ask myself on a daily basis. There are other, much more base questions which I am compelled to face. To make wine, or not to make wine? That is the question for me right now. Yet that question in and of itself compels the very same existential thinking as that which faced Prince Hamlet.

Will I live long enough to enjoy the wine I make today? This process is actually a commitment to living or dying. It takes about 3 months to make a wine kit, including bottling and the most basic of waiting times. If I start a kit, I am committing myself to existence for at least long enough to enjoy a sip or two. If I decide not to make wine, have I already asked and answered the question about my duration? Is making wine a reason to live longer? Maybe, in part.

Can I still enjoy the process sufficiently to continue with it? While I most certainly enjoy the socialization associated with making wine, it becomes increasingly difficult for me to actually take part in the process. These days I mostly watch from the sidelines, issuing the odd "bon mot" as others undertake the making of the wine. What do I enjoy more, the social aspect or the physical aspect? Clearly the social wins, yet I am rapidly receding from even that part of my life. It takes a lot out of me. By saying no, am I givng up? So yes or no also posits the existential.

Of course there is always the non-existential question. Should I really be spending money on wine when I can't make it from month to month without support from family and friends? Let's face it; I live only thanks to the charity of family and friends. In fact the financial is an existential question, since struggling with a lack of financial capability adds immensely to my emotional struggle, leading further to ask questions about the value of living. Thus, once again, I am compelled to ask the existential. To spend on wine, or to not spend on wine?

Here is the bald, simple reality. Even with the help of family and friends I am about $300 short this month. I can push this shortage on into February and March, ultimately breaking even in April, assuming no extraordinary expenses. There is no room in that budget for spending $130 on a wine kit and supplies. My "wine fund" is empty, having recently been raided for foolish things like food and soaker pads for my bed, a cost of my newfound incontinence. I've got $20 commited from a friend for the next wine making, but I asked her to keep it for now, knowing full well that if it went into the wine fund it would be taken out for something more important.

In the end, I ask myself the question. "To be, or not to be." As Prince Hamlet discovered, there are a great many parts in answer to that question. It hangs not on the edge of a single assumption. In my case, it should not be all about money, but it's a big part, large enough to overshadow other considerations. What is my quality of life? What are the things which make it better, or worse? How badly am I impacted by the things I can, or cannot do? Most importantly of all, is it really worth it, either wine or life?

Hamlet's answer is to contemplate what death will bring, not what life will bring. I would rather contemplate life, and make the wine. I've got $20. Now all I need is $110 and a self-commitment not to spend it on silly things like home insurance or groceries or medical supplies. I can do this.

Thursday, 18 January 2018

Another New Normal

There was blood coming out of my penis this morning. It happened after the in/out catheterization, so it's almost certain the HCA scratched either my urethra or bladder during the insertion process. To steal a comment from my brother when my Dad had a similar problem, "That's not normal, is it?"

No, it's not normal, at least not for normal people. But I am no longer normal in any sense of the word. No normal person has his or her bladder drained twice a day with a catheter. No normal person is on three different blood thinners and anticoagulants. No normal person lives his life with the kind of intrusive treatment I get on a daily basis.

Getting knicked by a catheter is normal, for those of use compelled to use them. Every now and then you are greeted by the sight of blood in your urine. What you learn to do is check it for colour and density. Bright, fresh blood is not so much a problem. Old, clotted blood means it's been there a while. That's a bad thing.

You know what else is not normal. Living in a wheelchair, having people come in twice a day to change you, to get you out of bed or put you back into bed, having someone put on your shoes or take off your pants, having to wear these God damned compression socks. Yet all of this is the new normal for me. Just like the blood coming out of my penis this morning.

I don't like this new normal.

Wednesday, 17 January 2018

I'm Not Really That Cheerful

I'm tired. My fingers hurt; arthritis or ALS, I'm not sure. My hands are weak, as are my arms. Typing is slowing down, my fine motor movements becoming increasingly difficult. The muscles in my right shoulder are in constant pain from muscle pulls as the few remaining work extra hard to accomplish what a collective of musculature once did for me. My neck is weakening, so my head feels extra heavy most of the time. I'm using the head rest on my wheelchair increasingly.

My HCA just left. I'm moving a bit slowly today, not responding as cheerfully or as quickly as usual. As she left, her comment was that I am usually such a cheerful person. I guess this is true, at least on the surface. Laugh and the world laughs with you. Cry and you cry alone. ALS is very much a "cry alone" kind of disease, so I constantly wear the mask of cheerfulness.

My reality is much darker, much more bleak. My predominant emotion these days is sadness, followed closely by immense frustration. Deep in the back of my emotional landscape is anger and bitterness, far enough back that most people don't see it, or feel it. But I do. I feel all of these things and more, all the while producing this false front of cheeriness and happiness in the face of tremendous destruction.

It's getting more difficult as I see more clearly my end of days. I count in days and weeks now, at best. While I want to live a long time, my reality is somewhat different. It's getting difficult to pick things up, such as a cup of water or coffee. I wear out easily when engaged in physical activity, so I don't get much done in a day. I'm now trapped in a wheelchair without a lift function, so everything above chest level is beyond me.

How do I feel? Not good. How do I keep going? I don't have much choice. Why do I seem so cheerful? What else should I do? Be grumpy, miserable? Should I let my frustrations spill out onto those around me? What I really should do is simply die. That would be the easiest solution. The problem is that I don't want to die. So the easy route is closed to me. I will take the more difficult road, living until I can live no longer, dealing with this devastated emotionaly landscape as well as I can.