Disability Rights

Miriam in the hospital
in her typical hospital environment

February 7, 2003

Disability rights.

I’m absolutely for them. Infanticide of disabled babies. No way. Optional euthanasia based on disability. No, no, no.

But.

I can look at all these things with a perfectly legitimate perspective: I’m an incomplete quadriplegic. I use a power wheelchair. Other people help me to bathe and dress. I’m legally blind. Any number of gadgets, not inconsiderably a plain old magnifying glass, make print accessible to me. The computer I am typing on makes all print white on black and 18-point.

But I often feel just as isolated from the disabled community as I do from the able-bodied: neither of them understand what I certainly consider the major obstacle in my Quest for Life Quality: I’m living with (and dying from) a chronic, progressive, largely untreatable disease. I have often thought at various points in my decay, that if the disability was all I had to deal with, I could show Singer and Kevorkian and my next door neighbors, for that matter, how little it matters, with good equipment and good support (and good home attendant care) to be disabled.

But I can’t do it. Because of the disease, which, before it takes my life, is going to consume it, corner to corner, floor to ceiling.

Like most smart, middle class kids, I went to college. Even majored in something. Even graduated. For ten months afterward, I had a great job in my field of choice (journalism, which has notoriously few jobs, good or bad.) I started work in October. I went part time in August. I quit in April. Since then, almost six years ago, the longest period of time I have spent unhospitalized is three weeks (late 1999). My average home stint is eight to 15 days.

The disease took my ability to eat in 1998. I subsisted on predigested formula via jejunostomy tube for almost a year, when, starving to death, I started a form on intravenous nutrition, nicknamed TPN, that I receive 12 hours a day via permanent IV lines in large veins, “central” lines, called the brand name of the inventors, Groshong, Hickman, Broviac. Lots of people have these placed for cancer treatment, but few people have a lifelong dependence on them. They get infected. Wicked easy. The infection gets in your bloodstream. After a corrosive course of IV antibiotics, they must be replaced. Every placement is a surgical procedure. Tomorrow, I will receive my 17th line. They are traditionally in the chest, but my veins there long ago gave out. We’ve also exhausted my abdomen. Tomorrow’s line, please God, will be in my thigh. The interim line is tenuously in my right ankle, and I am looking forward to the surgery like Christmas.

The goddamned disease.

Further on the GI process, my gut has been replaced by an ileostomy. Like most people with CNS damage, I can’t pee, so I have a catheter surgically placed through my abdomen, just under my bellybutton, into my bladder. Simple fold and fit concept. Like lots of quads, if the catheter malfunctions, I sweat a lot and then wet my pants. Humiliating, but often goes along with spinal cord criphood.

The disease ate at my bone marrow, and I don’t make red blood cells. My supply is transfused (via central line) every 2-4 weeks.

It ate at my lungs, and I wear oxygen 24-7, five liters at night, two during the day. It ate at my brain just enough to trip up grand mal seizures, which are controlled with yet another substance I drip into my chastened Broviac catheter (medical people who ask to see my catheter site are wholly unprepared for me.) it eats and eats at my muscles. My head does not want to support itself, and my neck is abdicating responsibility. My hips and shoulders are wasted into dislocation, because there is nothing holding them in place anymore.

What comes next?

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