Waiting for Falling ShoesIn a couple of weeks, Marian and I once again will make our pilgrimage to Mayo Clinic for a substantial panel of blood tests, an increasingly uncomfortable test measuring my capacity to breathe, and a peek at the density of my bones. Doctors and nurses will poke me, measure me, and listen to what is going on inside me. They will ask myriad questions and offer few answers to what questions I can think to ask. I will offer my own list of observations; results of home testing — breathing exercises, blood pressure results, oxygen levels, and pulse counts; and observed changes on my skin, pain and stiffness in my joints, noises in my head and lungs, and side effects of medication changes. The usual stuff...
It's not as if I will wake up one morning and my left arm will be gone — nothing so drastic as all that — but I do wake up every morning with the singular task of determining what, if anything, may have gone wrong. This has been a fundamental change in my approach to life. I always considered those who were so focused on minute changes in their health and well-being to be hypochondriacs or worse, delusional.
Having grown up with bronchial asthma, hay fever, and peripheral neuropathy as constant companions, I considered myself a budding hypochondriac. Fortunately, a particularly pragmatic family doctor convinced me at age 15 or so, that if I thought I was a hypochondriac, I was not one — because they never admit to the problem.
"Reality continues to ruin my life." — Bill WattersonI've often referred to chronic Graft versus Host Disease (cGvHD) as "the gift that keeps on giving." For some, the T-cells settle down and accept the host as their new home. My brother's T-cells are stubborn and will, on occasion make their presence known. About a month ago they held a demonstration in my mouth and throat, involving blisters and raw, red flesh. It lasted about two weeks and was very uncomfortable. I managed without additional medications other than a few extra acetaminophen tabs, supplemented with decaffeinated teas and soft food.
Watching has become my job. I watch my skin constantly and Marian watches the places I cannot see. A new blemish or flaky patch must be examined. Age spots drive me crazy. I cough a lot and I have to watch the color of whatever I cough up. I'm on snot watch, because goobers can tell a tale. Yeah, I have to watch the other stuff, too.
I watch people constantly. I seldom go out in public in the cold months as there are too many sick people wandering about. Still there are times I must go out, like to the hospital to see a doctor or a billing clerk. I see many billing clerks.
I try not to touch anything without my gloves. If someone coughs or sneezes, I scamper away like a great, slow moving sloth/squirrel running for its life. I look for signs of illness — excess tissues, red noses, watering eyes, chain-sucking cough drops, etc. Kids are walking Petri dishes, and I give them a wide berth. Remember: I'm not paranoid...those germs are out to get me.
I love life and I enjoy talking or discussing with friends. However much of life I must keep at arm's length for fear of infection. In many ways, this experience has fundamentally changed me and my world view. I am becoming more like today's denizens of social media. Why they choose to communicate impersonally, electronically, through such limited media, I don't understand. Talking on the telephone feels so personal now, I can hardly believe it. While typing words onto a screen for many to read and agencies without faces to record and analyze seems almost natural. It feels almost as though everyone is watching, yet no one can see me. I am at once exposed and invisible, in your face and totally detached.
And then, reality continues to change my life.
Good evening and God bless,