April 12, 2010
I am sick and getting sicker. I have known this day was coming for most of my adult life. I can no longer move my fingers enough to put on a pair of gloves. I can no longer slide smoothly into the front passenger seat of a car, instead having to grab my pant leg in my fist and drag the deadened limb into the vehicle.
The inevitability of physical decline is a sad fact of life. There is nothing anybody can do about it but endure the ride. In fact, for anyone with a beating heart, the train already has left the station. Yet for those of us with chronic conditions, that physical decline can become overwhelming. Despite all the advances of modern medicine, these illnesses are incurable, and the script has not yet been written.
And so we learn to live with ambiguity. The ride is a descent of various angles and turns. My rate of decline most certainly will not match my neighbor’s. The speed varies. But we do not get better. That is a fact.
My slide down seems to be picking up speed. I am trying to figure out how to deal with that. I cannot change it. The trick is to cope with it better and move on.
We can live in that dream world called denial. I have spent my fair share of time there. Denial is the land of how we would like life to be. Illness that cannot be controlled does not fit in there. There are no Faustian bargains that allow us to negotiate our way out of trouble.
Back in the real world, we have a big job in front of us. This sickly state is no place to spend a vacation. But here I am. I am losing my vision, bit by bit in steady erosion. What I once saw with clarity is washed out now, faded into a bleak nothingness. Still, I peer into the future.
I have written about declining eyesight before. The first time I used the word “terrified” in a column was on this very subject. There is no fear like the specter of sightlessness. It won’t get that far, my doctors assure me. I’m not convinced they know what they are talking about.
Optic neuritis has attacked my optic nerves like soldiers in a war zone. When my doctors are done reassuring me, they admit they are perplexed. Should I fold my tent and just slink away? I do not think so.
There is a place for personal courage in this process. All of us must define faith for ourselves. Whatever form it takes, we must learn to trust and allow ourselves hope. I have faith in myself and my ability to push away fear and keep going. I have been doing just that in the decades since I was diagnosed with multiple sclerosis.
Who I am, my true identity, rests in my head. My mind is central command, and I see clearly. I am not going to give up now.
I am going to be strong and quit whining, live a great life, and there is more to come. I feel good about myself. I am living my life with grace and dignity.
I am going to keep teaching my college-aged kids to live well, to take on whatever challenges or setbacks come their way. I want them to be able to find satisfaction in an imperfect life.
Life is imperfect, as my disease keeps reminding me. Things do not go our way all the time. Gotcha. Life is not fair. Okay. Got that, too. Life can be sad. Right. I am beginning to see a pattern here. Let the mythical white flag rest forever in the closet, may my powder stay dry, and, please, let the fight continue.