It happened so fast it stunned me. At the age of 67, after one week in a hospital, I found myself in a nursing home. Maybe I shouldn't have been surprised. We think nursing homes are just for old people, but that's not always true. Nursing homes also exist for people like me. Most people in nursing homes are old, but it isn't age that gets them there. It's disabilities, the kind that make us unable to get in and out of bed or get dressed or go to the bathroom on our own.
In 1968 I was in a helicopter that crashed while I was filming a movie near Aspen, Colorado. My lower body was paralyzed, and I started using my arms and shoulders as others use their legs and hips. Now, my bones are eroded by abuse and arthritis, and muscles and tendons are long gone. For 35 years it's been slow-motion demolition. Performing everyday tasks has become so painful, my functioning so balky, that I'm ready to try a partial shoulder replacement, the only remedy medicine offers. Recovery will certainly take many months. That certainty causes real fear. So equally does the uncertainty. No one can predict how long I'll lose my physical independence. But I've done my homework and made my decision.
One September morning I wake up very early and hoist myself out of bed on a ceiling-mounted lift. I ride the lift to the bathroom and deal with my bags of waste, liquid and solid. Then I shower, put on jeans and a T-shirt. This is my morning routine, for years the same; what's different is how hard it is to do with ruined shoulders. In my power wheelchair, I roll out of the now empty house and into my lift-equipped van. I turn to the front, snap my chair into the driver's space, take up the hand controls, and I'm off to the hospital. It's 4:30 a.m.
An hour out of recovery, I wake up in a tiny hospital room. An opaque curtain separates me from my roommate, Joel, also a paraplegic. When not in the hospital, he lives in a nursing home. Fourteen years after his injury, he's forgotten how to live in the world. We never see each other face-to-face but become buddies in a way, troubled souls living four feet apart for an entire week.
I pulled every string to avoid going to a nursing home after surgery. I wanted to go to a rehabilitation facility. But eventually we all get to a point where our strings aren't enough. Most people with longtime disabilities are terrified of nursing homes. Many of the young disabled arrive on one-way tickets and spend years or decades attempting to make beginnings amid people occupied with endings. Nursing homes are environments of isolation and disempowerment. They dictate when to get up, when to go to bed, when and what to eat, when to take showers and who will help, and when and if to leave.
The disability-rights movement resists. "Our homes," we chant, "not nursing homes." But living with a disability at home takes nerve, know-how, and resources: resources the movement is trying to build but that aren't yet adequate for most. But too many of us languish in nursing homes until the desire to live in the outside world evaporates. We become lifers, sometimes unable even to get out of bed. It's not going to happen to me, I tell myself. I'm too well informed. Too proactive.
I am discharged from the hospital. My daughter drives me in my van to a small town only a few miles from my home in Golden, Colorado. I am delivered to a low brick building tucked away from the highway. No sign announces its name or purpose.
On entering, I am met by a wall of fetid air. So many colostomies have passed this way, and here I am, bearing another. I wheel down the hall, and there's a new assault, an olfactory Doppler effect, as I pass each door. So it's true what they say, I think. Nursing homes stink. The next morning I smell nothing. Have I so quickly surrendered my senses, or is the smell really gone? On my own in my power chair, I roll outdoors. Immediately I'm overcome by the extravagance of color and warmth. I haven't realized how thoroughly my senses and my freedom have been deprived, have forgotten what fresh air and sunshine can do to a vulnerable mind. I'm embarrassed, but for two days I weep.
My room in the nursing home is small, but it does have a window, and it's private. This is extraordinarily lucky. Most of the rooms, just as tiny as mine, are double occupancy because that's what Medicare covers. But before I signed on with this facility, the management agreed to provide a dedicated phone line for my computer. Now it seems giving me a room with two phone connections and no roommate is the easiest way to get me online.
After some experimentation I conclude the new speech-recognition software doesn't work as well for me as one-handed keyboarding. It's clumsy, torture at first, but it links me to the world beyond this place. I can do some writing.
I'm an accidentally embedded journalist with a different kind of war to report.
A no-holds-barred report from inside a nursing home
The rehabilitation wing, where I am, is nominally separate from the long-term nursing wings, where the permanent residents are, and the secured unit, where many of the Alzheimer's patients reside. But the borders leak. Almost every day some confused stranger wanders into my room...