My Funeral

I've been thinking about my funeral lately. It's not a morbid kind of thing; it's the kind of planning that we should all do, the forethought required to make it easier for those left behind to deal with my remains. In some ways, it is kind of fun, as odd as that sounds. I think about what I would like done with my ashes, where I would like them spread; it reminds me of of the many places I have enjoyed so much over the years. Then there is the whole party things; I smile just thinking about it.

There are actually two options I have in mind for my final departure. The first is the Viking funeral option. I think it would be so cool to go out Valkyrie style, my body set into the frame of a small boat and pushed off shore, fire arrows shooting into the sail and hull, the flames from the tar soaked timbers rising black into the sky against the setting sun.

I envision this happening somewhere deep in the Broughton Archipelago, perhaps near Village Island or somewhere up Knight Inlet. Another alternative would be somewhere in Checleset Bay, off the west coast of Vancouver Island, or even somewhere in Desolation Sound, perhaps just off of East Redondo Island. Once the flames had finished with the wooden hull and my body, I would hope it all simply sinks under the weight of the various attached personal articles, like my weapons and shield. All I need to do is buy a shield.

The final step would be a party somewhere. Since I am dying with no money left, it will have to be a self-purchase bar. I apologize for this; it is what it is. Nonetheless I would hope that people would gather together somewhere, perhaps at a local pub or even possibly a rented hall, and spend some time telling nice lies about me, making me seem a much better person that I really was.

Since option one is highly unlikely thanks to cost and the Coast Guard having this thing about flaming boats on the pristine waters off the coast of BC, my second option is much more realistic. I would like a very simple cremation using the cheapest possible cardboard box as my casket. After all, it's going up in flames. You can do a "visitation" if you want but I am not in favour of them. I've seen dead people; they don't look as good as they do when they are alive. If you want a visit, do it while I am still here.

Once I am cremated, don't use some fancy expensive urn for my ashes. A cardboard box will do. After all, it's just ashes; I will be long gone by then. Take the ashes, safely secured in the box, and find a place to have a big party. Since I will be dead broke, you can ask for donations to cover the hall and people can buy their own liquor. However please make sure all of the wine left in my wine cellar is used at the party.

I don't really care about the location for the party, but I like the idea of seeing if the Cat 'N Fiddle pub will do a private function for it. After all, it used to be a mortuary. It's fitting. This would be an open party for all who wish to attend. Once again, people should feel free to tell stories that make me seem much nicer than I really am.

After the party, take my ashes to the coast. If you want, do another thing there for the folks in BC, perhaps in Abbotsford somewhere. Once again, don't spend a lot of money. I'm dead and cannot cover the costs. However, along the drive from Calgary to Vancouver, stop in a few mountain glades or beside a beautiful lake, and sprinkle a bit of me there. I love the mountains, the hunting, the fishing. When you finally get to the coast, ask one of my friends with a boat to take my ashes to sea. Once again the Broughton's or Desolation Sound spring to mind.

There is one last thing that really is important to me. When I die, soon after I die, please have a gathering of "the gang" along with my kids, my brothers, and Mom and Ray, here in my apartment. Drink the last of the liquor, except for the wine that might be needed for my funeral, eat the last of the food. Empty the fridge and pantry. Pretend that I am there with you; I will be. There are things here that belong to the gang, things they have left in my care. There are things here that some of them should have; I am sure you will figure it out. After all, these few things around me are really all I can leave behind.

African Princess

I had a bit of trouble getting my pants on today; nothing serious, nothing unexpected, nothing dramatic. It was just that incremental, small bit of extra effort that I needed today as compared to a couple of days ago. I didn't put pants on yesterday, so perhaps that is why I didn't notice it yesterday.

Today one of my regular home care workers, one of the good ones, the 27 year old African princess from Addis Ababa, was coming to do exercises. She is a beautiful young lady with caramel skin and perfect teeth, long curly hair and an exquisite figure. She is Muslim, but not conservative; she laughs and smiles at almost everything, despite working many long, hard hours to send money to her family in Toronto and in Kenya. Her husband is back in Nairobi, awaiting clearance to immigrate to Canada and join her.

Getting dressed is a requirement for these exercises. It made me think about what is coming down the line. I began to ponder how I will dress myself when my arms weaken sufficiently that I cannot lift my legs up to put on pants and underwear. What will happen when I cannot roll enough from side to side to inch my clothing past my rear end? How am I going to get my underwear over my feet and up?

These are not thoughts in panic. These are thoughts in planning. If I think about these things well in advance, I will have a strategy in hand and the tools in place to help myself, to maintain my independence just a bit longer. One day, of course, it will all come crashing down. One day I will need help with these most intimate of tasks. This is the kind of thing I have to think about.

Simple acceptance does not come easy. I cannot just say to myself "Oh well; that's how it goes." I may be able to say that to others, to voice that thought calmly in public. Inside, however, there is a much different dialog going on. Inside this dying body is a mind rebelling at each new limitation and failing. In order to manage this process, I need to plan for ways of accepting as well as fighting the changes in my body.

I already have a foot strap, but once my arms are sufficiently weak that I cannot pick up my legs, the strap won't do much good. I have the lift system by my bed; that may be of some use. I may have to learn how to get dressed while fully prone, using the bed to hold my legs and somehow making whatever is left in my arms do the work of pushing and pulling as much as possible.

Or, I may just have to accept the fact that I will have reached the point of complete care. I hope they assign the African princess to look after me. I like her.

A Shaky Start To My Day

I'm shaking pretty badly today. It's not a violent kind of shaking; it's a subtle shaking reflecting the weakness of my body in general. I am no longer strong. I am no longer capable of throwing off a really busy day and moving into the next one. A busy day for me means I need a day of rest afterwards. Yesterday was a very busy day, and I stayed up late.

It has been a motto for me that "If you can't do the time, don't do the crime." In a non-criminal perspective, it means that if I am not willing to suffer the consequences of my actions, then don't do it. The problem I have these days is that I am not entirely certain what any given set of consequences might be. A late night might simply mean sleeping in the next day. A busy day might simply mean going to bed early or sleeping longer. On the other hand, there are days, like today, where the consequence is far greater than I expected.

Of course the truth is that I had a bit of wine last night, perhaps a bit too much. My past experience with this has always been to get up and face the day, rise above my body's limitations and push myself through. I can still do this some days, even with ALS. On the other hand, some days I cannot. This is one of those days.

Part of the problem might be that I have nothing on my agenda for today, nothing planned, no responsibilities. That means I can sort of "give up" on making myself go. Since there are no imperatives in my day, I can sleep until late in the afternoon, eat when I get up, give my body a chance to feel bad. I find I do much better when I have things to do. When there is no plan, I do nothing; that's not really a good way to live.

Tomorrow will be better. Tomorrow I will have recovered from yesterday. Tomorrow I have things to do, things on my agenda, things planned. That will help me get up and go. I don't know what it will do about the shaking, but I won't have a lot of time to think about it. I can focus on what I have to do, not how I feel.

Thanksgiving

I am hosting a party today, something I love to do. I come alive when company comes over, when I am surrounding by laughter and talking, but the smells and sights and sounds in the kitchen. Today is a combination Thanksgiving dinner, a holiday which comes one month earlier here in Canada than it does in the USA, leading to untold confusion for my friends below the border, and a wine bottling party. One activity neither precludes nor includes the other; it was just convenient to do them both on the same day.

Preparing for a party has become a much bigger challenge for me than in years past. Almost everything is more difficult; some things have become impossible altogether. Still, this morning I made turkey stuffing, stuffed the bird and got it going in the oven. Since then I've gotten out wine bottles and started cleaning them in preparation for tonight.

Thankfully, a few of my friends are coming over early to help with the rest of the food preparation. Brad will be here in a few minutes and Karin is coming over later on. Brad will help with the wine bottles and then with the cooking. Karin will pitch in once she gets here. With their help, I will be ready. Of course I am not supplying all the food. Everyone else who attends will be bringing something as well. That's one of the great things about my friends; they all show up with a willingness to help, a willingness to contribute, and a big appetite. I love it!

It's not just my friends that I am thankful for today. I have so much to be thankful for, so many people around me that make my life worth living, that keep me wanting to go on. I am thankful for my parents. for my Mom and Step-Dad Ray; and I am thankful for my Dad who passed away in 2010. I am thankful for my brothers, Adam, Peter, Jim and Matthew, and my step-brother Michael. I am thankful for my step-sisters Laura, Erin who passed away the same week I was diagnosed, Susan, Rebecca, and Lisa, and for my half-sister Sarah. I have a complicated family, and I am grateful for the impact they have all had on my life.

I am thankful for my children, the most blessed outcome from my marriage. I love each and every one of them, just as they are, where they are, and for who they are. Mary, Meaghan, Kate and Rick are the most important things in my life. I am grateful for each moment I hear their voices, read their emails, see their posts online. I am thankful for my grandchildren, Charlotte, Rose and little Quinn.

You see, I have a lot to be thankful and grateful for. It would be so easy to become bitter in my situation, to see only the bleak future that awaits me, forgetting about all that is around me today. I am thankful that I am not built that way, that I can remember how much good there is around me, to treasure all that life has to offer. I live a life of thanksgiving, and I thank you all.

Terrible Home Care

I've settled down enough that I can write about this. For all the strength and presence I have enjoyed over the years, these days I can get pretty rattled fairly easily. I don't know if my abilities have changed or if my fear has increased, but I find myself easily upset at times, especially when it comes to the Home Care people I have to let into my home now and again. Some of them are incredibly good; others are completely incompetent. Sometimes the whole agency, a company called CBI Home Health here in Calgary, seems out of touch with what they are supposed to be providing.

Today was a bad experience. My regular care worker is on vacation, visiting family in Toronto. She is very good at her work and I enjoy having her in my home. I know she cares about me; she is very kind to me and very encouraging. She even went so far as to text me yesterday to see how my clinic visit went on Wednesday. I like her.

While she is away they are sending another person to work with me. They are supposed to send competent, trained people who understand the nature of my exercises. If the person has not been trained, they are to send a supervisor to walk through the exercises with me. This systems has been hit and miss in the past; today it wasn't simply a miss, it was a giant miss.

The person sent by CBI Home Health had been here before. She is a new immigrant who barely speaks English. She is in her mid-fifties, heavy and difficult to communicate with. I don't care so much about all that; what I really care about is that she has no idea how to do my exercises and she is unable to read and interpret the Care Plan. She simply cannot do the job. This was the second time they sent her as a fill-in, with no regard to ability or capability, and no supervisor to boot. I told them last time not to send her, yet they sent her once again, completely unsupported and unable to care for me.

I told the care worker that she couldn't do the work and asked her if she could leave. Then came the upsetting part. This particular care worker does not understand how to use a cell phone; they have to check in and check out with my phone to confirm arrival and departure. This way the agency can confirm that they are, in fact, in my home when they say they are. It is a management and control system and I understand its purpose. However, since she cannot figure out how to use a basic cell phone, she made several tries, handing the phone back to me each time saying "Doesn't work."

I finally got frustrated to the point where I said "Tell me the number and I will dial it." She replied "I don't know number, only to dial it." This went back and forth several times and would have been comical had her tension not risen with each attempt. Finally I said, "I will just call the dispatch desk."

Then she got very agitated and said "No. They don't know this number." I am not sure what the hell she meant, but she refused to leave and refused to let me call the agency. I finally called regardless of what she said. Shen then refused to talk to her dispatch desk, saying she had to call this other number. I told the dispatch desk she wouldn't talk to them. Then the desk called the home care worker on her own cell phone; apparently she knows how to work that one. They told her to leave. She left.

Afterwards I called CBI Home Health and told them how upsetting this experience was, and that I never, ever wanted that person in my home again. This is part of the risk of using a home care service. You let strangers into your home, hoping that all will be well. Usually it is; sometimes it is not.

Focal Length

I see the world through a different lens, a lens with a short focal length, the near term in sharp edged detail, the immediate in brilliant clarity. The further out I go, the blurrier it gets. You might say this is normal, that all of us see the world this way. The only difference for me is that further out is not all that far, that the distant future lies within the next year or so.

These changes, these events that have overtaken me, have caused me to ponder more on the daily aspects of living, on the things I do in the moment. I don't worry so much about the longer term effects of my decision. I don't worry so much about what might happen next year, or the year after. I spend more time looking at the next 90 days; that is my time horizon.

There are people out there who tell me I focus too much on the fact that I am terminally ill. After all, they say, everyone is going to die. I wonder, when one of my thirty-something friends says something like that, if they are distinguishing between the practical reality of near term demise or the long term theoretical end to a life well lived.

Other changes drive my focal point as well, changes in my body. Last night I had a dream. In the dream I was standing up, walking. Then, right in my dream, I appeared to myself in some sort of quasi-waking way and said "Don't be silly. You should be in a wheelchair." I think I am finally adjusting to the loss of my legs. What comes next I don't know. I just know that it takes time for the mind to adjust to the body's changing reality.

So the subconscious within me rebels at the loss of ability and the idea of imminent death. My daily life cannot be lived this way; it would be far too overwhelming. My mind still sees me as hale and hearty and strong and living. Inside my thoughts, I cannot escape the patterns that would be here, my body not in a battle with ALS. My mental focus has astigmatized, the refraction of my life before ALS blurring the view of my life today.

It is an odd thing, my mind working one way and my body working another, the two in constant conflict, struggling with my mental image versus reality. I have to keep checking to be sure I pay attention to the right one.

Clinic Dreams

It's clinic day today; the day where I make the long trek to the Calgary South Health Campus, pay the $13.50 for parking, go up to the ALS Outpatient Clinic on the fifth floor, and have them tell me pretty much what I already know. In fact they don't really tell me anything; they ask me things. After I tell them, they go "yep, seems like that to us too".

I am pretty sure I know the outcome of this visit already, and it won't start for another hour or so. They'll tell me my progression is slow but steady. They'll tell me that my arms are fulling involved and getting weaker. They'll tell me I need the new dosage of medication for PBA. They'll tell me they are not sure how long I have, but it is most likely within the 12 to 24 month range.

There is a game I play with myself on these days. Actually it is more of a dream, a hopeless dream, that I play inside my mind as I make my way to the hospital. I have this dream that one day, in the midst of one of these clinic visits, they will say "Gee, Mr. McBride, we were wrong. It seems you don't have ALS after all. You have blah, blah, blah that imitates the symptoms of ALS. It can be easily cured by getting rid of the blah, blah, blah in your system. The damage isn't permanent; you are going to get better."

This is, of course, a hopeless dream. It's just not going to happen. There are other, less hopeless dreams I can have, dreams that might possibly come true. I can dream that my progression will slow even more, almost to a stop. I can dream that there might be a treatment for ALS before I die. I can dream that there is a way to stop my hands and arms from shaking as they get weaker. I can dream of all these things, and there is always a distant hope. I suppose that is mostly what keeps me going in this hopeless situation.

There are those who will say "At least you didn't have Ebola". I would happily trade; at least half of Ebola patients survive the disease. There are those who say "You can't give up fighting". Sure I can; in fact one day I will give up fighting. It's just reality. There are those who say "You've got to think positively, have a positive mental attitude". In the face of this awful and insidious disease, I think I do a pretty good job of staying upbeat and lively. One day, of a certainty, all the PMA on the planet will not stop this disease and it will kill me. I just try not to think to much about that day.

I think of all of this stuff when I go to clinic. Mostly I try to find ways to deal with the everyday stuff that goes with ALS; medications for PBA, medications for DVT, medications for clonus and spasticity. All the rest of that stuff is just dreaming.