I sent out an email a while back to those who subscribe to this blog and asked them for their questions. This is the first in a periodic series where I will do my best to answer these questions. If you have a question for me, please ask.
Question: If you could do one more thing – go someplace – what would you do? A trip to Europe? Disneyland? Ride a bike? Just curious… maybe just go around that block without falling out of that chair.
I've read this question at least a hundred times and it rattles around in my brain like a frozen pea bouncing across the kitchen floor. After the, 'do one more thing...' I add, 'before MS started chipping away bits and pieces of my body.'
My first thoughts are grandiose ones, such as walk the Great Wall of China, go scuba diving in the Galapagos, or river raft through the Grand Canyon. The kind of things that go on the list of what I'll do after I win the lottery. It isn't long before I move to more middle of the road things that I used to be able to do and find myself yearning for: dancing at the local folk festival; camping in the Ochoco mountains; planting a vegetable garden; or throwing a dinner party.
I imagine that most people have an extravagant 'bucket list' that is more likely to fill dreams than actually happen. And, through time, or age, or habit, everyone has let things slip from their lives that used to give them joy or pleasure.
When I drill down past the extravagant dreams and the middlin' regrets and losses, I am forced to face the real answer. If I could do one more thing, I would wash my hair. I would drive to the grocery store and buy our groceries. I would cut my own meat. I would...this is where I lose it. I've let go of grand schemes and mourn the loss of the things that used to fill my life, but it is the relentless eroding of every little thing that is too much for me to dwell on.
I no longer have the life I wanted. Now, I know people want to point out how wonderful and worthwhile is the life I have. This makes me so angry. I can't do the simplest things. Some days my fingers are so clumsy I can't open the paper around a straw. Most days my husband has to slap on my deodorant and close up my bra. And on and on until the 'cannots' crowd out the 'cans.'
I wonder what is next? Forks are a challenge and spoons seem to roll through my fingers and cutting food into bite size pieces is almost impossible. Am I up for facing the day when I need to be fed? Will I wear a bib with grace or rancor.
These past weeks I have wrestled with how to live life with MS. If from here to the end of my days is going to be filled with a steady erosion of every little bit of my life, can I handle it? I don't want to be miserable all of the time. I know that it isn't easy to be my husband,my son, or my friend. Being in my world takes work. I don't want be a project or a mission or a burden. And yet, to survive, I have to find a way to be all of those things.