November 15, 2009


Quicksand arises when there is flowing groundwater passing through a sandy pit that keeps the sand from compacting. When you hear this, it takes away the mystery of the whole terrorizing quicksand of the movies - the stuff that lies, unremarked, for years, until the bad guy passes by and is consumed. Often it's just the extra that gets sucked in, the infamous "black guy" in Star Trek that accompanies the bigger stars on a planet explore, only to die gruesomely.
Lately, I've been feeling that quicksand-y feeling. It's all part of figuring out what I should be within the framework of my illness and limitations. I no longer have a job, or the mental stamina to think about that job anymore. My children have grown up and they rarely need me now, I'm divorced, I live alone save for a feisty parrotlet named Dora. I write, but I don't know that I write well, or that I have anything meaningful to say.
I purposely moved to this city to force myself to deal with the anomie, to face it head on instead of hiding it behind old friends and things. I wanted to wend my way, find firm ground under my feet.
It's not easy. I find toeholds - good friends that support me, family who care for me, a sweet man who loves me, but the toeholds are still slippery, and I don't fully trust them. I need to find a place to put my foot flat down, to find myself again, to find a purpose for my life, so I don't feel as if I am just using up oxygen and resources (primarily chocolate, but never mind) with no output.
Is it enough to just live and be thankful for that? Is it enough to read and appreciate, and see and appreciate, and move and be thankful? I think we have a responsibility to do more than this.
I try, in my little ways. I try to be cheerful, to bring smiles everywhere I go. I offer little helps. I want to offer bigger helps, but resist because I am no longer a dependable worker. My skill set is rapidly deteriorating, my new skills are slowly developing. And gently, inside me, my MS is slowly dripping to take away the sand from below my feet.
How do disabled people find the will to go on? How do they continue, when they know they are no longer contributors to the sand pit of life? Do they rest on their laurels, as I have been counseled to do? Do they find ways to remain contributors, despite their increasing loss of ability? When do they decide to stop fighting the quicksand, and let go? (which, by the way is supposed to be the best way to stop sinking, so perhaps the Buddhists have it right after all)
I'm learning to stop kicking, but it's hard. I've always been a kicker. I've lived my life as an advocate, a change agent, a promoter of others. This giving in to a disease that cannot be seen and that changes day by day is so hard.
So while I'm trapped, I'm thinking. I don't want to be an "extra" in this world. I still want to contribute. Now to find the direction. And then to wriggle slowly, carefully, over to the dry sand.

November 4, 2009

Some days you're the tire, some days you're the road

I am so sorry to whine, but for the last month or more, I've felt just like the poor mouse in this picture, shaken back and forth by my MSCat. It just won't let me go, and plays with me and tosses me between its paws and chases me when I think I've got away for a bit.

I can hear it purring with the enjoyment it's having with me.

Last night, in amongst my leg hiccups (back in full glory, darn it), I felt something new - the teeth of the MS, as it bit on my leg. The touch of the sheet was agony. Liquid fire burned up and down my right leg, causing me to gasp out loud. All of my nerves were agitated, so that the touch of a hand was an acute irritant. Even the gentle, caring touch of a dear friend.

Sometimes, I can pull it together for short periods and seem almost fine. I can laugh, chat along with the rest of them, go to events, make love, eat foods that require chewing.

But EVERY TIME, I have to pay for it. EVERY f*^&^%*ng time. After every fun day, I have days of exhaustion and pain. After every laugh, I have a moment of sorrow.
It's almost enough to make a gal give up and decide just to sit about and watch reality TV, especially on days like today when my brain is fine but the rest of me, from my throat on down, wants to pack up and go to Bermuda - and you know what? I'd send it, if I could. Even for five minutes.

Unfortunately they are connected, my mind and body. And the final laugh is that my mind is what is wrecking my body, as it degrades. It's all so ironic, for the gal who spent a lifetime working on her mind...

On the good side, whatever wrecks things in my brains also makes me appreciate the wrecking, like the mouse admiring the artistry of the cat as it tosses her up and down, catches her by the tail, whips her about in glee. We are marvelous things, hunters and hunted.

So for today, I'll watch and admire the killing dance. Tomorrow, I'll try to escape again. After all, the cat expects it.