Piece By Piece
This post was originally written in 2013 and is moved here from my old blog. The moving process begins albeit ever so slowly.
“To be bitter is to attribute intent and personality to the formless, infinite, unchanging and unchangeable void. We drift on a chartless, resistless sea. Let us sing when we can, and forget the rest..”
― H.P. Lovecraft
I cried today because I threw away a covered tin that was originally filled with little wrapped sweets. I used to have dozens of tins of varied sizes and colors. You know the ones I mean, the kind that those Danish Butter Cookies that people who want to give you a gift but don’t know you very well or know what you like tend to give at Christmas. You save them to give away your own homemade baked goods during the holidays. Holding up the Cadbury’s Heroes Tin, I looked at John and asked, “Do you think I should just throw this away? I mean, I guess with these hands I’m never going to make Christmas cookies by the dozens again, am I?” He said, “Oh throw the damned thing away. Throw them all away. Who cares? We’ll buy cookies.” So I threw the tin in all of it’s shiny gaudy purple Cadbury’s Heroes glory into the kitchen trash can. And then I cried a little.
It’s hard to explain to regular people why I cried. I cried because throwing away that stupid tin I dragged all the way back from England wasn’t about the tin. It wasn’t even about the cookies. I cried because every so often some really little thing like throwing away the tin sneaks up and slaps me in the face, reminding me that I have a handicap. Most of the time, I’m pretty unaware of it. Well no, let me rephrase that…most of the time I refuse to acknowledge, even to myself, that I have anything wrong with me.
I can’t do up buttons or zippers. When I want to go to the bathroom, I have to ask someone to do the zippering and buttoning for me. People say, “Why don’t you wear pants with elastic waistbands?” I can’t write anymore. I am down to typing with two fingers. People say, “why don’t you just make an X on your checks?” “Why don’t you get Dragon Speak for the computer?” There are so many small motor things I can no longer do. The list is huge. Just imagine going through your day wearing mittens. And then, just imagine, if you’ve been right-handed for almost fifty years, having to retrain your brain to recognize that you are now left-handed and to send all messages to what used to be “the wrong hand.”
What I have learned is this. I won’t wear elastic waist pants because that’s not a style choice I’d make if I didn’t have these hands. I won’t make an X instead of struggling to sign my name because I used to have beautiful writing. And, for Chrissakes, I used to teach cursive handwriting, beautiful, perfect Zaner-Bloser penmanship. I’m not ready to make only one letter of the alphabet to represent Me, Dana. I’m more than that. I am unique; and, by the way, so are YOU. We’re more than any X can signify. I won’t use Dragon Speak on this computer until there is absolutely no other way for me to have written communication, no other way for me to stay in touch via email or to mess around on Facebook or do this sometimes neglected but always loved little blog of mine.
I guess the bottom line is this…I will persevere until I just can’t. I’ve learned humility since that diagnosis of Multifocal Motor Neuropathy fourteen years ago. As the disease has slowly progressed, I’ve learned to ask for help. Learning that was such a huge huge psychological obstacle for me to overcome. Asking for help goes against my stubborn, independent nature. But, I did learn to ask for help and in doing so I learned how very wonderful my fellow humans are, how pleased people are to be asked, how good it makes others feel to help someone in need. I guess one day, I’ll wear those ugly old lady stretch pants. And, one day I’ll do Dagon Speak, but you won’t know it. That’s part of the beauty of cyberspace, we’re all perfect here. Look at Stephen Hawking and his exquisite mind. He’s a superstar in pixels.
Until any of those days come though, I am remaining stubborn and hard-headed. I believe that every time I give something up because I have a handicap, because whatever it is frustrating me, because it’s too hard or because I have to find a new way of doing it or because I have to ask for help, every time I hesitate or give up doing it, I am giving up a piece of me, a piece of myself and what I like and what I do and what I want to do for others that gives both them and me pleasure. Pretty soon, I am afraid that if I do the giving up often enough, sliver by sliver, piece by piece, there won’t be any of me left. I’ll dissolve into nothingness and disappear. I don’t want that to happen.
All that being said, the final thing I wish to say is that none of you are getting Christmas cookies from me this year…deal with it.
“Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too.”
- Lawrence Bixby
Last updated March 29, 2020