Wednesday, January 18, 2012

And the Oscar goes to...

Drilled down, pared back, bare necessities, whittled away, stripped to the bone, narrow world view, tunnel vision: phrases like these pop into my head while thinking about the blog post for this week. My world consists of 20 plus hours a day in a hospital bed, 1–3 hours in my wheelchair, and little else.
I am at the tough phase post major MS exacerbation where the dramatic drop in function, the hospital stay, the Solmedrol and its affects are over. I am left to suss out what I have regained, what seems to be permanently gone, and what kind of life I can make with what remains.
This week brought the added blow of a dreaded lung infection and congestion. An ad is running on TV right now that shows sufferers of a certain condition with an elephant sitting on their chests; that is how my chest feels. Neurologists and the relentlessly chipper among the MS community will argue that MS won't kill you and they're right in a sort of pollyanna, rose colored glasses way. It is the infections that creep in to affected body parts like lungs and bladders/kidneys that have a way of cashing in ones ticket. {I digress into my ongoing irritation/envy/jealousy of MS as presented by the national society, "I bike/jog/juggle/climb mountains and have MS, see how great life can be" Where are the wheelchairs, National MS Society?"}
I started this exacerbation so far down that I should probably be rejoicing at how much I have regained. To those looking at and commenting about me, it seems that rejoicing is in order. I hear their words and know I should be grateful that I have as much function back as I do…but all I seem to see is what is missing. My right leg and arm are no longer trustworthy, they are at least 30 to 40 percent weaker than before and my leg can no longer bear any weight. For so long, 12 years, my right side has stayed strong and been the lynch pin that kept me moving independently in my world. Now it is flawed, if not broken. The biggest change seems to be in my pelvis and torso in that I can't seem to sit up without folding up like Jabba the Hut or a too tall pile of wet laundry. I can no longer transfer or sit up by myself and my world is so much much smaller.
In that small world I am almost completely dependent and, to put it crudely, it sucks. Every dropped pencil, cube of ice, clean shirt, color of sock, bite of food, change in temperature, and countless other minutiae of living requires negotiating with another human being. Then, the indignity of personal care: someone washes my hair; too many people ask about and keep track of my bowel habits; nurses, PT and OTs, caregivers, friends, and family come and go. Yet, I stay here the unwilling star attraction of the Janine Show.
I put on my relentlessly chipper, jokey, smiling persona. I try to not be picky about what color my socks are or if my hair is greasy or how much butter I want on my toast. The desire to have control over the details of my days is snuffed out by the fear of being alone. Once something drops to the floor I cannot reach it. If there was a fire, I couldn't escape. If I reach just a little too far and fall out of bed, well that would be a disaster. 
Nighttime is the hardest. My hubbie has to sleep, his working keeps us afloat. I don't sleep well from nerve pain. I swear time moves slower at 2am than at any other hour of the day. Often, I turn on my favorite worship music and have a long talk with God. In short, one thing that keeps me going right now is the movie that plays in my head of me whole and healthy, dancing at the gates of heaven. I've told Him I want cymbals, bells on my toes, veils-the works, "take these shackles off my feet, so I can dance." This is the movie I really can't wait to be an extra in some day.


Kim @ Stuff could... said...

I feel for you having to stay in the hospital...I had those nightmare days of rest in the hospital with steroids, way back in time...Sorry for the lung infection. Yes MS can kill you (complications of it)

dee said...

I'd like to be put on the list of people who want to dance with you! Come heaven sister!

Have Myelin? said...

I don't know where I've been... I'm sorry I haven't been here.

Time does, oh it does...move slower at night. Especially between 2am and 6am. I watch the clock in this tiny apartment, knowing if I get up Alex and the dog gets up. Sigh.

I have a lot to catch up, with this blog of yours....