Living with multiple sclerosis (MS) — a chronic, progressive, and often disabling disease of the central nervous system — can be full of “lasts.”
I vividly remember the last time I ran, for example.
It was just days before I was diagnosed. It was snowing, and I ran down a powdery slope through a wooded park and fell into a fresh drift with the joy of a child. I was out of breath, I was cold, and I was alive.
Four days later I was lying in an MRI machine on my way to learning of my lifelong fate.
I remember my last day of full-time work at a job I loved, my last water ski, and the last time I cooked a Thanksgiving dinner (a 13-course, 12-hour affair).
And then there are the lasts that I don’t remember. Not that I don’t remember the activities in general, but rather I don’t remember when I stopped doing them.
Some things in a life with MS are stolen from us in grand form, while others simply slip away from us without our even knowing it.
And then there are the things we decide to stop doing ourselves. This week I did something for the last time, knowing (about halfway through) that it was the last.
When I Knew This Was My Last DIY Project
I’ve always enjoyed painting a room, from choosing the colors and preparing the space properly to the actual laying on and laying off of the primers and color coats, and the joy of seeing the room transformed from its former self.
I also, in the past 16 years or so, have enjoyed seeing my dogs watch me paint. What must they think of their master that he can change the color of their world with the wave of his hand?
This time, it was a small en suite bathroom that needed attention. We’d had new shower doors installed and had someone patch the plaster for us, and adding the final touches has been a job on the long finger for too long.
I knew what I wanted to do in there: the color for the walls, a few coats of varnish on the floor, perhaps a couple of new fixtures to round out the look. Three, maybe four days’ work — tops.
My thinking was that because it was a small room, there wouldn’t be too much work involved, and I could handle it myself.
Did I mention that I wasn’t even finished with it before I decided that it was my last?
The Result Is Just Not Worth the Personal Price I’m Paying
The intricacies of masking around objects not to be painted is a chore, but it makes the painting part so much easier and faster.
In a bathroom with a sink, lights, shower, window, toilet, radiator, door, and baseboards, even a single color of paint made for enough intricacies to become tedious. Folding myself into corners to paint behind the porcelain fixtures, stretching over or under the shower enclosure to get to the far spots, and trying to see where I had clear-varnished the floor with multiple lights made for a frustrating and exhausting job.
We’re very happy with the end result, and it’s just in time for visitors to arrive next week. But that result came at a higher price this time than it has in the past. The stress of getting it right while coping with all the MS “stuff” that has accumulated in the past decades was just not worth the price I’m paying now.
Absorbing the Sting of Another Activity Lost to MS
I remember my last time running because of the joy of the moment as well as because of the pain of it being my last.
Giving up the paintbrush will sting a bit — you know, self-sufficiency, satisfaction of a job well-done, saving a few bucks — but that I’m making the decision that it’s my last time puts the power in my hands rather than MS’s.
Yes, I’m not going to do any more jobs like that because of multiple sclerosis. But it’s me saying that I’m done after this one. I’m not left wanting to do it again but realizing I am without the ability.
Semantics? You bet it is. That’s one of my coping mechanisms.
Everyone has theirs, and throwing in the towel before being knocked out, that’s mine.
Wishing you and your family the best of health.