The thing*(if there is really a *thing) about living with a rare progressive disease is that most people don’t understand what’s wrong with you, and why you can’t meet them for lunch, like you planned to the week before. You tell them what’s “wrong” (in my case what by body informs me what is not possible today) but they will never truly understand, unless by some strange cosmic fluke of serendipity they live with the same issues.
I feel badly that I can’t go places or do things I could have done the week before, but today, I have to live in the today, the here and now, and respect the limitations that the interloper who dictates my movement and functionality will allow today.
If I attempt to ignore what the disease dictates, it is I who will pay the price. I am not my disease, but my disease is a part of the package of who I am. You will never see the pain on my face or feel the agony that I live with unless you live with it as I do, or you happen to be brave and strong enough to be my life partner.
So, when I let you know I can’t be there, or join you for whatever activity, please respect that no one feels worse about bowing out than I do. It is a fact of my life, and my life is all about quality at this point. If you’re truly interested and strong enough to see my pain, then I will be able to call you a friend.
~Crip Out~
Dear Abled* Folks 