And so it begins. Late last year I came into a bit of money. It has kept me going, and traveling, for the last year. It will soon run out. I will, once again, have outlived my financial plan. I'm getting closer, though. This time I am within months of terminus. Last time I was out by years. It's not that I am any better at planning or scheduling out any money I might have. I just so happens to have worked out this way.
I'll be out of money, at least "extra" money by the end of this month, perhaps by mid-November. If I work diligently, I might be able to get to my diagnosis anniversary of November 22nd. With that anniversary I will have officially live a full two years past my initial prognosis, and longer than 80% to 90% of my cohort. That means as much as 90% of the people diagnosed on or about the same time as me will have died, or will have resorted to feeding tubes and breathing devices.
I just seem to keep plugging on. I try every outrageous thing I can, yet nothing so far seems to want to kill me any earlier. The every increasing weakness over my whole body is a certain harbinger, a raven on my lamp post, crying darkly into that bleak night which is, or may not be, waiting for me. That's why I am measuring in months these days. I wonder if I should switch over to weeks yet. Who knows? Most certainly not me.
All I know for sure is that I am going to keep going, as long as I can keep going. My decision to stop will be based on any number of factors, finance being only one of them. It's a big one, that's for sure. I continue to hear from other pALS who have been bankrupted or financially ruined by this disease, even here in Canada where we have such good health care support and the various ALS Societies across the country. Everything I do in my life costs just a bit more, takes just a bit more out of me than it would without ALS. I am unable to sustain employment thanks to my weakened condition.
Even my writing fails to pay; I write this blog for myself as much as anything, as a progression tracker and life witness. I've written the odd thing now and again, yet consistently fail to find publishers. The truth is that there are so many people out there who are writers, good and bad, all looking for someone to publish and pay them. I can't handle the competition. I'm just not up for it.
So, once again I am back to scramblng to make ends meet. Once again I will be buying the cheap wine kits, and skipping out on Scotch altogether. Once again I will eat through the food in my freezer, carefully ensuring I get the most out of it, until such time as I may or may not go shopping again. There are resources out there, like the food bank and such. Once again I will use them.
Only this time it won't be for so long, I promise. Please donate. The button is up on the right.
Hi Richard. I have been following you for a year now. My dad had ALS... I would like to donate. Where should I send money?
ReplyDeleteHi Maryana
DeleteYou can click the "Donate" button at the top right of my blog, or you can email a donation directly to me at rmcbride@mcgi.ca.
Thank you very much.
Wouldn't insurance cover living in a facility? Or would you rather die than move to one at this point?
ReplyDeleteI would rather die than move to a facility, where I will die anyways.
ReplyDelete