Chris, Chris, Richard and Peter; CCRaP Meeting

I'm going to try to write. I just said that to Chris as he handed me some of his home made fruitcake, a treat I love to receive from him each year. The other Chris is sitting beside me, chatting on and off about this and that, while Peter sits in the living room watching golf on TV. These men provide me with real intellectual distraction, so it's hard to get my mind off of what's happening around me and into writing my blog.

This is no complaint. In fact it is one of the greatest gifts I can be given these days, the gift of time. Having them here, all in a group, is a call back to our past days of winter sailing, time on board in chill weather, time in small pubs at local ports, late nights of chatter on board ship. Having them here is a memory writ live in time, a recall of better days. Or perhaps these are the better days. Either way, I like having them here.

No, I don't like having them here. I love having them here. Would that I could spend the rest of my days surrounded constantly by such loving and giving men. Would that there were someone with me, someone rounding off the rough edges of so many days and nights. This is what is truly the toughest part of my life these days, that I spend so much time without them, without anyone really. I run this race solo so often. Now, to have companions, this is what I need most.

I will confess to being tired. Yes, I stayed up late. Yes, I drank too much Scotch. Yes, I am going to do it again tonight. That's what we do in these days together. This is our time, a time I will not easily let go. Unfortunately it is a time which will easily let go of me. They must return to their lives, go back to BC, go home to their own families. I have my life here, and I am so grateful when they come to be a part of it, especially now that it is becoming increasingly difficult for me to go see them.

Schmozzle

This morning has been a bit of a schmozz, you know, a schmozzle, a chaos and confusion to start my day. It begins with a phone call at 9:00 AM from the AHS Wound Care Nurse telling me she would be here between 11:30 AM and 12:30 AM. Then, 10:00 AM while I am half asleep, I get another call telling me that my HCA for today just called in sick, a half hour before she is scheduled to be at my place. They were trying to find a replacement. The earliest someone would be here would be 11:00 AM. A collision was on its way.

I got myself up at 10:45 AM, fervently hoping for someone to show up at 11:00 AM to help me with my shower, personal care, and exercises. I knew better. I still hoped. Rather than simply take this as it happened, I decided to take matters into my own hands. I got onto my commode chair, did the required pre- and post-shower set of towels, clothing, pills and such. Then I went and did my morning routine as if the HCA was there. It was a bit more difficult; some things are easier when you have help. Nonetheless, I had my shower.

Drying off, particularly in my hard to reach areas, is never easy. This is where the HCA helps. Today, however, my only viable option was to lay on my bed and air dry. I was doing just that when the AHS Wound Care Nurse rang to get into my building. I quickly put on a pair of underwear, or at least as quickly as is possible for me these days. I slapped on a shirt and was just in the process of buttoning it when the nurse walked in the door.

I explained the situation, including my lack of pants. She seemed unconcerned, going about her business with the cuts on my feet. After about 30 minutes, she was done, and just as she was done my front door called again. It was an HCA coming to help me with my shower, the one I had an hour ago. The nurse gathered her stuff up and left.

No sooner than the nurse was gone, the HCA came in. She was completely new to me. This meant she could not do my exercises without a supervisor, and heaven only knew how long that would take. The supervisor thought I was getting a shower and personal care first. So I had her call the supervisor to let her know that I had done with my shower. I decided at that instant to skip exercises too; I just did not feel like being a training exercise for a new HCA once again. I just didn't want to do it.

The HCA asked what she could do. I asked if she would tidy the kitchen, take out the garbage and recycling, and make my bed. Her idea of tidying the kitchen did not include emptying the dishwasher despite my specific request that she do so. The routine here was new for her; I get it. She did take out the garbage and recycling, although she did not replace the recycling bag, That's another task for me.

There is, however, a powerful redeeming and rejoicing point for my day, now that the schmozz of the morning is done. In a couple of hours, they will start arriving. My brother Peter and my two best friends, both Englishmen named Chris, are coming to spend the weekend with me. I will head to the airport to pick up Chris Smith at about 3:30 PM. Then Chris will go get the other Chris and Peter at about 8:30 PM. Then all of us will spend a terrific weekend together; talking, drinking, laughing, telling stories, reminding ourselves that life is still a lot of fun.

I'll take a schmozzle morning for this kind of afternoon, evening, and weekend. For the next hour or two I will get food ready. Then it will be time to get in the truck and start having fun.

Tired, Replete But Tired

My hands are shaking a bit. So is my whole body. I'm not sure why. I had plenty of rest last night. I've just eaten a pear and some grapes for breakfast, and I am about to have my coffee. I have a hard time explaining this things. Perhaps today I will blame in on exhaustion, even though I slept for 13 hours last night.

The reason I am exhausted is that the last couple of days have been busy ones. On Tuesday, thanks to help from my friend Anne, I went grocery shopping. I got out of my apartment, into my truck, and went to the Co-op. Then Anne visited with me for a while. I got into the Hot Rum Toddy and perhaps stayed up a bit late. So I had a nap yesterday afternoon.

Before that nap, I got into my Power Wheelchair and motored across to Market Mall. My friend Bobbi encouraged me to come out for lunch. She had several things to do, but wanted lunch with me to be one of them. I went, I ate. and then I went to Safeway to pick up a few things which were not available at Co-op. When I got home, the nap hit before I could even put the groceries away. I slept in my power chair for about 2 hours.

After waking up at 7:00 PM, I put the groceries away, after which I went online to spend some time seeing what the rest of my world was up to. I like to read the news online, especially from first line news suppliers like CBC and BBC. Before I knew it, it was 10:00 PM and I was ready for bed again.

It was a good feeling when I went to bed. My fridge is full. My pantry is full. Even my liquor cabinet is full. I have all I need for my guests coming this weekend. I have all I need to feel like I can meet any food or beverage crisis possible. I feel safe, secure, protected in my castle from attack or siege.

Unfortunately the nap caught up with me last night. So I took a Zopiclone. I remember waking up at 3:00 AM to go pee. Then, nothing. Nothing until 2:00 PM today. I woke up, and the first thing I thought was how much I needed to go back to sleep. Those Zopiclones can really work sometimes. Regardless, I got up. But boy am I tired. It's an early night for me tonight.

Foot Care Day

Today is a busy day for my feet, in particular for my left foot. While this morning had its normal routine of shower and compression socks, since then the Wound Care Nurse was here to change the dressing on my left foot, and shortly the Foot Care Nurse. He will trim my toe nails, help attack the toe nail fungus which is now well established on my feet, and take a look at the skin quality on my feet, top and bottom, to see if there is anything we can do to make them less gross.

This means that three different health care professionals will be visiting me today, three different people focused on three different things for my body. The Home Care Aide focuses on my general health and well being, especially helping with my shower and Range of Motion exercises. The Wound Care Nurse is looking after the cuts on my feet from my fall last week. The Foot Care Nurse is looking after the general care of my feet and toenails.

Coordinating all these different care givers can be a challenge. For example, the Wound Nurse has to come after I have had my shower and exercises. There is no point in her coming while I am in the shower or being cared for by the HCA. After my exercises is a good time. Then the Foot Care Nurse has to come as well, except that the wound covering for my feet covers my toenails, so it would be best if the Foot Care Nurse was here at around the same time as the Wound Care Nurse. That doesn't happen, so my left foot is not getting a lot of general attention right now.

The dressing has been put on to leave the toenails free on my larger three toes, but the two small toes are completely covered and inaccessible. That means the Foot Care Nurse will have to either relieve the bandages slightly and put them back when he is done, or he will have to just ignore the smaller toes on my left foot for a few weeks.

All of this for a simple toenail trim and bandages on a cut. It's a complicated business when you get to this stage, where you need multiple specialists to take care of your failing body. I suppose it is better than being in hospital though. At least at home I get my own food, sleep in my own bed, change my own catheter, and don't need 24 hour nursing attention. It saves money for the health care system, and keeps me independent.

Defy The Odds, And Live With ALS

To live with ALS, to live with it and not give into it, requires a great deal of will power, self-determination, and, on a regular basis, defiance. I think of Lt. Dan in Forrest Gump, climbing the mast with half his legs, screaming at God into the face of the hurricane, defiant unto death with his situation. I also think of Forrest saying that Lt. Dan "made his peace with God" after that. There is a certain truth in all of this, that defiance against all odds can bring you peace, that living a self-determined life takes will power.

Today I am going to engage in an act of will power, of defiance. I am going shopping, with or without someone to help me. I am going to go downstairs and get in my truck. I am going to drive to the Co-op grocery store just a few minutes away. I will get out of my truck, into my wheelchair, on that snowy parking lot. I will go into that store, and go shopping.

This might not seem all that defiant, yet it really is. The weather outside is frigid, -20C, around zero Fahrenheit. There is plenty of snow on the ground, perhaps 5 - 10 cm, aka 2 - 4 inches. That may not seem like much, but it will certainly challenge a wheelchair. It's becoming increasingly difficult for me to get into and out of my truck on my own. Yet I will face all these challenges, defy all these difficulties, and go do what I want to do.

I have a plan. I have an approach to minimize some of these risks. My biggest challenge, the thing I need to use all my willpower to face, is the fear. I do not have to be courageous; all I have to do is face my fears and do it anyways. That's what I am going to do. I will defy the storm. I will determine for myself what I will do, and I will do it. Then, when I am done, I will find a way to get home, to get these groceries unloaded and up to my apartment, and to rest. By then I'm gonna need it.

No Drama, Please

It's Monday, video blog day! I want to apologize right up front for the very poor sound quality of the first 30 seconds. I was off to the side so I could show the snow and cold outside my apartment. The long and short of that segment is that I have been trapped in my apartment for more than a week, unable to get out to do my shopping. I did get out with Katherine last Thursday, and I did get an ambulance ride to the hospital last Wednesday. but neither of those trips got me into a grocery store.

It's all very dramatic, my life these days. Weakness, short of breath, hospital visits, so much more. I just don't need any more drama in my life. So here is my video view, bad sound and all.

A Bad Night.

I sat on my bed this morning, putting on my compression socks. The right foot went on, no problem. The left foot, always the left, gave me some trouble. So I pulled extra hard at the folds in my compression sock to get it over the heel. That's when it happened. My fingers let go of the sock, snapping back at me. I managed to punch myself in the balls, and then, having lost my balance, I fell over backwards on my bed. My life is a Three Stooges skit.

Actually it was the perfect denouement for what had been a very rough night, a rough night starting about an hour before I went to bed. It was then that I saw some lovely pictures my daughter had posted on Facebook, pictures of my children and their children all gathered for a photo shoot to celebrate my ex-wife's 60th birthday. It broke my heart. Why was there no special gathering of children for my 60th birthday? I know why. It costs too much for them to come to Calgary.

There I was, looking at these beautiful pictures with happy children, grandchildren and ex-wife. It was then I started to ask myself why I was being punished and she was being rewarded. Had I done something so wrong, to leave her after so many years of unhappiness? Then it really started, the self-doubt, the self-recriminations. I began to look at my choices financially, personally, socially. I wonder if I've done the right thing, if I've made the right decisions.

That's part of the problem with living with ALS. I used to say there were no decisions in life which you could not fix if you made a mistake, except suicide. I still think this is true, but I have reached a point with ALS where fixing bad decisions is pretty much impossible. I simply don't have the time to change course, to correct. My days are numbered. Each day is becoming shorter, with less and less ability on my part to do much within these shortened days.

I spiraled down from there. I began to tear myself up inside, regretting what I have left behind, what I lost along the way, feeling anger that I got this deal, that it is such a terrible way to live and die. Even within this context I chastised myself for these feelings. I'm being self-indulgent, that with this disease I still have a pretty good life. I shouldn't complain. Self-pity is for losers. Here I am though, struggling with ever deepening sadness over what could have been, what I was supposed to have, what I should have done.

This is the saddest part of my existence, the eternal self-doubt, that perpetual feeling that other people would have made smarter decisions, that someone else would have made better choices. I can't shake the feeling that I am doing this wrong, that every day I wake up and make more mistakes, more bad decisions.

Of course at the root of all of this is my internal assumption, something that I cannot seem to shake, that I got ALS because of something, because of something I did. Intellectually I realize this is not true; emotionally I have to make some sort of causation. I feel like somehow I have done this to myself, or perhaps God has done this to me, as some sort of punishment for sin, some form of payback for bad choices.

I know this is silly. If there is a God, he or she doesn't work this way as far as I can see. Bad things happen to good people all the time. Good things happen to bad people all the time. There is no rhyme nor reason. I know there is no reason I got ALS and someone else didn't. I know this is just bad luck. Still, I cannot get rid of the feeling that somehow this is my fault, that somehow I am a failure, that this is happening to me just for that reason, that failure as a person. I just can't seem to let go of this self-condemnation.

I didn't sleep well last night. These thoughts haunted me, both in my waking and in my sleeping. My dreams simply amplified my waking thoughts. Morning came. The sadness had left me. So I decided to start my day by punching myself in the balls. After all, one good turn deserves another.