On finishing 21 years of living with MS.
At Summer solstice I’m reminded that this was around the time of year when I was first diagnosed with multiple sclerosis in 1997.
I’m ‘celebrating’ 21 years of life with this disease.
That season was indeed a freaky time for me without question. I was on tour with a music group on the East Coast and we were billeting in different homes each night when my first symptoms appeared. My whole side went numb. I couldn’t tell where my leg was up against the sheet while I was in a strange bed in a strange house.
I was scared shitless, as they say.
It took another six months of testing before I was finally officially diagnosed. But it seemed pretty obvious that the inevitable words “you have a MS” were going to be said.
I wont regurgitate all of the highs and lows that I have had since that time. But I will say this, especially to those out there who have been diagnosed with something similar, that this has been far from a death sentence.
Besides all the cool things I’ve been able to do since then, it has also changed the way I look at the world, at life, at family, at friends, at church, at work, at death, at gratitude, at community, at God…
All for the better; I hope.
I’m not saying it’s easy! It’s far from it. I’m living in an apartment on the west side of Toronto and haven’t slept in my home since January. I’m in a power wheelchair which I hate but I love. I’ve had to retire from work because my health doesn’t allow me to do the things I needed and wanted to do. I depend on personal support workers to help me get up from, and then back to bed. Things I once took for granted like taking a shower and using the bathroom are all much more complicated these days.
So this indeed is a new season of life for me and for my family. I don’t know what it’s going to look like yet, but if it’s anything like the last 21 years, it will be full of adventure.
And amidst it all, I do indeed feel blessed.
Got that I remain grateful.