As disheartening as it is to suffer with this disease, because of my struggles I’ve grown emotionally, and I’d rather not go back to the person I used to be. I’m better than that. I’m more empathetic and thoughtful. I’m tougher than I ever was. I like this version of me more than the old one. So, if I were to become nostalgic, it would be along the lines of, “I just want my old body back.”
But I don’t say either of those things, because I spend almost no time thinking about what used to be or what could have been. That type of sentimentality only undermines my happiness. I expect that most folks who find themselves longing for their healthy days understand that it’s not time well spent, but they can’t stop themselves. I’m lucky. Because of DNA or the example my mother set for me, or some of both, I’m disinclined to go to a place of regret or mourning.
I’m not without angst, though. When I imagine a better life, I think, “I just want my disease progression to stop.” I know I can handle this, but despite my best efforts to stay grounded, I sometimes agonize about what is yet to come.
Other than these occasional lapses, I spend most of my time in the moment, as the Buddhists like to say. Here, I am neither saddened by what could have been nor frightened by what might yet be. Give this a try, and you may find a measure of contentment. I have.
For Joe
Posts
Love your strength.
ReplyDeletethank you!
DeleteHi Mitch,
DeleteI have been following your blog for some time now with great interest. I also have PPMS, diagnosed about three years ago, although the first symptoms were noticed in 2009.
It all started with weakness in right leg and has steadily progressed - foot drop - knee flex died - right arm weak- right hand etc. I had to leave my job two years ago and will be turning 40 soon. Like you, I have in some ways accepted the disease, but fearful of what is to come, even though progression is very gradual but steady.
I can still walk with the aid of a splint about 100m on flat ground and have little to no strength of grip in my right hand. I was considering getting an exercise bike so my right leg will get some normal movement as it's
poker straight when I walk.
I'm still adjusting to been unemployed/unemployable, and find it difficult to be a productive person at any level.
Hope I didn't bore you too much with what you already know !
Irish lad Ray
Ray, thanks for your comment. It's nice to hear from people who are in a similar boat as me. Best of luck to you.
DeleteHey Mitch,
ReplyDeleteBeing able to not think about "what used to be or what might have been" is not a trick I have mastered. Oh, I try to think only about the here and now and "it is what it is" but the what ifs thoughts creep in.
I often think I wish I had my old body back, but since I'm a member of "that club" which by the way doesn't require any dues, �� I really look forward to a perfect body in a perfect world someday. That's what gives me hope and contentment.
In the mean time I'm enjoying the living "sh*t" out of my grandkids and making the best of it.
Thanks for your posts. It's great to hear how others in the same boat get by.
Dee/OH