It’s truly an evil disease, this MS of mine. I’ve been using these blog posts to keep everyone up-to-date on fund-raising efforts, the events to ‘give back’ for those who’ve contributed, but I haven’t really given a reaction beyond telling people how thankful I am, how oh-so-humbling this experience has been thus far, how I am elated at the incredible response I’ve received from friends, family, strangers–but I’ve failed to give my own personal, first-person point-of-view of precisely how I feel about all of it. So, indulge me; let me ‘exhale’ on all of it.
I’m scared. I’m scared. I’m scared.
To put it in the right ‘frame’, you need to know that my Father was diagnosed in 1985, a couple of years prior to my entry into the world. As a teenager, I watched my Father’s disease progress–his own personal ‘MS claw’ had a grip, though the speed at which his claw grasped him was entirely different. It was 10 years before we began having to pick him up off the bathroom/bedroom/living room floor and help him get back to his feet. It was 15 years before its talons began to break the skin and draw blood; that is to say, before he had completely lost his ability to walk. He now lives in long-term care, his MS claw never leaving him, its grip only ever tightening as we all look on, helpless, powerless, and impotent to do something, anything for him. This understandably really defined what my biggest fear was.
That, one day, it’d be ME being picked up off the bathroom/bedroom/living room floor. That, one day, it’d be me being grasped, clutched, left scarred and bleeding by my own MS claw. Then it happened. Biggest fear become reality. To my astonishment, the craziest thing happened: I dealt with it. And I continue to deal with it, as the claw tightens and loosens its grasp, I adjust. It never lets go. It has cut me several times. I can’t walk. I can’t type. I can’t contain my bladder’s contents. I have ‘difficulty’ with romantic intimacy (I will allow you, to quote the Immortal Bard, to “take it in what sense thou wilt”–use your imagination…).
But I deal. Everyday. I find it astounding how well a person can adjust to change–we all hate it, most of us, given the option, never would–but when you lay your cards out, drop the ones that serve no purpose, and focus on what matters and what’s important…and hope that you can pick up what you were missing for a good hand, the resiliency of the human spirit can take flight; if you’re as lucky as I am and are surrounded by courage, strength, and lots of good ol just plain awesome. I find it in my family. I find it in my friends. And they’re all pulling at the claw, trying to help release me from it’s seemingly herculean grasp. It’s why I’m still here. It’s why I still believe life is worth living, whether I’m running, walking, or rolling…
But I’m still scared.
I’m scared the $20k+ that my friends, family, et al helped me raise is all for naught.
I’m scared that I may find some relief from endovascular therapy only to watch and feel the squeeze of that claw as it does what it is programmed to do and just keep on squeezing, breaking my skin, drawing blood, leaving me scarred with no hope of recovery.
I figure since my biggest fear became my every waking second…it’s about time I found a new one, yeah?
One might say I’m being melodramatic. And perhaps I am. But despite how irrational it may seem and despite how easily you as an objective 3rd party may be able to poke holes in my fear-theories…it don’t take ’em away.
The claw’s still there.
Its grip is still getting tighter.
1 month to the day ’til the plane hits the tarmac in San Jose. Until then…1 day at a time.