Parkinson's is so greedy. It takes everything.
It is taking my ability to sing, changing my voice. It has made getting dressed 10 times longer and much more tedious, especially on days that I can't tie my own shoes. It has been working hard to destroy relationships, depleted all resources, including any financial stability or care I might have afforded, and no one wants to become a burden.
It keeps me up all night, chipping away at different parts of a body I am identifying with less and less. It feels better sometimes to just leave my body, because these legs that used to leap over hurdles and do splits in the air and carry me swiftly into the arms of a my love, now carry chronic pain and constant loss.
Everyone leaves. Almost everyone. The ongoing loss of function is too much for most acquaintances, and they care, but really don't want to know. Some friends of friends think they know me and stick around, just to watch the final crash.
We all know what's ahead. I do not want to die like my grandmother died. I refuse to die in the same space my father died, with his children begging an empty-eyed nurse for morphine, and a cool rag for tears. His tears, or ours?
You spend your life in service to others, and die with nothing… Not even mercy.
Is death what everyone's so afraid of? I'm more concerned that I will survive and drag this out, languishing in a bed with tubes piercing tender and raw skin, unable to move or speak.
Lest we forget this is the same disease that took the life of the greatest fighter that ever lived. You may not like the cliché of surviving PD as "a fight", but that's what it has become, and I'll never rope-a-dope as long as he could.*
Parkinson's has destroyed all plans, stolen my joy, and left me with constant agonies which would bring my critics to their knees, but you won't see me bowing to it.
You might see me cry though, because it also affects people around me and I hurt more knowing they have to suffer with me. If my presence becomes a burden, that would be the worst thing that could ever happen.
Lately Parkinson's has begun taking the one thing I could always count on that connected me to others and brought me infinite joy. I am a dancer, but Parkinson’s stabs at my legs and curls my feet. It tethers my left arm and yanks my neck forward. During times when these medications finally work, you bet I'm going to dance like a banshee...all day and into that darkest night.
My other option is to have my head cut open and my substantia nigra stimulated by electricity. Frankenstein will have nothing on me.
Bracing for impact, in every moment. What will it take next, and how much time do I have left before my body becomes a cage? There is no escape and scant relief, but there is one thing that keeps me in fighting shape, and very much alive.
It is love. Your love. Infinite love. All this love.... oh, and I have a lot of work to do before I go.
For now, I'm just going to walk the dog slowly up the hill and give thanks for another day.