This year a friend of mine whose husband has MS was so kind as to organize a team for the local MS Walk. These walks are sponsored by the National Multiple Sclerosis Society and benefit their programs and services. Our team was called “Muslim Support” and we had nifty matching t-shirts with our team name on the back. We made shirts for our kids as well, saying “I (heart) Someone With MS.” There were three paths: 1, 3, and 5 miles each. Needless to say, the MSers and their families in our team took the 1 mile path. The others were feeling adventurous and so took the 3 mile.
I realized afterwards that having MS is somewhat like being on that walk. You start off the day at the starting line with everyone else, but you plod through your day slowly and deliberately while everyone else goes by as if they are going twice the speed.
Then, when you both reach the finish line (we all did close together in our case), you realize that they have done three times as much as you did, but in the same amount of time.
While you go off to recoup, the rest go off rushing throughout their day through numerous other tasks, while you struggle to regain strength from the first task.
This is your brain on MS. This is your body on MS.
The more and more a person progresses through the years with the disease, no matter what fancy medications they are on, the result is that this dichotomy between “normal” and “MS” only becomes more and more pronounced.
It is part of my lack of acceptance of this fundamental truth of MS that leads me into trouble sometimes. I don’t want to accept that I can’t do fifty million things in one day, so I say “damn to hell with the MS, I’m gonna do it!” and the MS just says, “screw you,” and raises its head in vengeance. My husband said one time when I fell into an MS slump–“You knew this was coming,” and I did.
That’s why the job of the caretaker is so hard because they see us struggle with the acceptance of our limitations, with the acceptance of dependency on medications, with the acceptance of dependency on rest and people’s help. And the most they can do is advise and support–only we can wrestle ourselves into accepting the realities of what is happening to our bodies.
Us MSers on the walk were fortunate enough to have our beloved spouses with us, and our children and families, plodding along beside us, and walking side-by-side with us as we crossed the finish line. And they alone know the true triumph of being able to do that feat of walking so far–something that normal people would take for granted. So we can only hope that as we plod along and our steps get slower and slower, that we’ll have those beloved caretakers by our side, matching their steps to ours, hoping that they don’t mind taking it slow, and hoping they get the reward for sharing our struggle.
(btw, I’ll be back to the top 10 Tarbiyah Mistakes notes soon!)