Tuesday, 25 October 2016

Reality Bites

I was reading in one of the ALS Facebook groups this morning as I lay in bed building the energy to get up. There was a post from a woman whose husband had been diagnosed just 10 months ago, going from walking to complete paralysis in that time. He is near death and she wants to know why he got this kind of ALS, and how other people have lived longer. There were no answers, at least none which could help her.

As I read her plaintive post, I found myself thinking he was one of the lucky ones. He got this dreaded disease and it has taken him in less than a year. No need for expensive wheelchairs; that's not enough time to even order one. No need for expensive house renovations; I suspect he went onto a commode fairly quickly after losing his legs. No need to pay the cost of living; he was going to die soon. I would happily have traded him places.

The long duration is a curse, both physically and financially. For each of you who says I should be happy to be alive, try living my life these days. Yesterday, for example, I posted about having $8.76 in my bank account. A friend almost immediately emailed me $100, yet I did not take that money and go out. I did not spend it on doing something fun. I have to save that money so I can pay my bills in November; I've already spent my October budget.

To help make it clearer, I've inserted a spreadsheet with my various budget options below.

What all of these numbers really mean is that last year, before my expiry date, I was doing okay, living off of my savings, having a good time, fully prepared to die on schedule. When that didn't happen, I panicked, asking my brother for money. He helped, but also reminded me that I had to solve this problem. He has helped since too, helping me get past those months with three mortgage payments.

So I talked to my condo board chair about not paying my condo fees. She said "Don't worry about it. We will ignore it as long as we can." Once again, both of us thought that it might not be all that long. So I lived each month with a shortfall of almost nothing to about $250. Help from family, friends, and the generous people who click donate on my blog meant I could get by. I wouldn't have a ton of money, but as I get increasingly ill, I don't need a ton of money. I could, however, afford the odd luxury, like a wine kit, or treat, like going to Murray's wedding.

However things at my condo building have changed. There are two other people not paying their fees. In order to go after them, the board also has to go after me. They are already in the process of registering an "attachment", a lien which will allow them to get their money. This attachment will be reported to my mortgage holder, ScotiaBank, who then have the option to use it as cause to foreclose. I keep hoping I will die before all of this happens, but to forestall the foreclosure, I have started making my condo fee payments again.

These days I must live on a skinny budget as well as paying my condo fees. It means that each and every month I will be $425 short. On months with a third mortgage payment, I will be $900 short. 

I know I have to ask for help with this. It is humiliating, embarrassing, frightening. I will never be sure what the next month looks like, nor the one after that. This is no different a situation than many others face, only I face it while dealing with ALS, that's all. I'm angry, angry that I have lived too long, that I'm beating my prognosis. I truly wish I had died on schedule. It would take away so much of this stress. Yet I am still hoping, still begging.

When the initial discussions began around Medical Assistance In Dying, as they now call it here in Alberta, there was a brief discussion on how poverty might impact access to assisted death, or willingness to choose assisted death. That is where I am right now. It would be easier to die, easier to end my struggle, than it is to deal with this stress. Last night I took out the pills and counted them, wondering how many it would take. I probably have enough, but I didn't take them. After all, thanks to the kindness of others, I have enough money for November. That will take me to fours years post diagnosis.

I always knew the end of my life would be shitty. It's ALS, after all. It is progressing in me, daily. It is moving faster than it has in a while. I'm done from the chest down, with the exception, oddly enough, of my diaphragm. I can still breath, although I am running out of breath more often. I can still eat, drink and make merry, unless it includes walking or standing or even sitting up straight. I still have some "quality of life".

But last night, sober as a judge, I sat there and wondered, pills beside me, counted out. I wondered if all this is really worth it, knowing how it was going to end no matter. I hate having ALS. I hate being broke. I hate not having the strength or energy to earn a living. I hate feeling like I have failed, at life, financially, as a parent, at everything. Shorter would have been a lot better. With any luck it won't matter soon enough. Until then, I am forced to ask for charity. What kind of man have I become?

1 comment:

  1. I've been following your blog since your diagnosis. My husband was diagnosed the same time you were. I lost him within 15 months of that. Maybe you, or someone close to you, could start a GO FUND ME page on Facebook. They get "shared" over and over and are very very effective in raising money very quickly. Just a thought.