Around the first of April of this year, I began using a wheelchair when I leave the apartment. This was an inevitability that I resisted, fought off for as long as I could. Admitting that I need a wheelchair struck me as “the last straw,” akin to simply giving up, accepting the fact that the virus is winning. Worse, I have become more of a burden to my fiancé Rick than a companion.
However, between the debilitating pain in my back—from severe osteoporosis, three herniated discs, four compression fractures, and a mysterious inflammation that won’t go away; the loss of muscle mass in my legs; and asthma and COPD—I have no choice. Use the wheelchair or spend the rest of my life hermetically sealed in our apartment.
The wheelchair also represents a 180-degree turn in my relationship with other long-term HIV survivors and other friends. Like most of us, I have made myself available to friends in need since the early 1980s. That’s nothing special or unique about me—every long-term survivor I know has dedicated innumerable hours to helping others, and continues to do so. And so it’s quite a shift for me, from being one of the go-to guys that many people have relied upon for help, to being the one who needs the help. I have always feared becoming dependent upon other people. And although Rick and my survivor friends here have been truly angelic about helping me—and assuring me that it’s not burdensome—it still causes me great pain to have to ask for help.
If I’ve learned nothing else during the 29 years since I was diagnosed with HIV, I’ve learned that getting from day to day often entails a major effort to get used to the “new normal” and making the best of it—taking meds every day for ever; quarterly blood draws and evaluation; battling opportunistic infections and ailments; etc. So as I acclimate to this “new normal” in a wheelchair, here’s what I’ve learned to make the best of from the view down here.
The first thing I noticed is that our sidewalks here in San Francisco are barely passable. Many sections of the sidewalks have buckled (from tree roots and earthquakes), leaving a gap as big as a half-inch or more. Bumping over those gaps in the sidewalks can, and often does, jar us wheelchair users like a sledgehammer to the base of the spine.
On a much more pleasant note, however, flowers are at nose level down here. One of the things I’ve always loved about San Francisco is the abundance of naturally blooming flowers during every season, even the “dead of winter.” Flowers that I might have overlooked—literally, looked over—from a standing viewpoint now grab my nose’s grateful attention. Often, as Rick is pushing me around town, I can reach out and brush my hand through the flowers, enjoying their fragrance from much closer than when I walked.
People are much friendlier toward us wheelchair users than toward other pedestrians. In this city where people seem to be afraid to make eye contact, or smile, or utter a nonchalant greeting to passersby, the wheelchair seems to draw people’s “better angels” out of them—they smile at me, make eye contact, say “Hi” or “How are you doing?” I like to think that maybe it’s their way of brightening the day for someone in worse shape than they. In any case, their smiles and greetings and offers of help are most welcome.
So the view from down here isn’t quite as bleak as I had feared all those years. Just as I and tens of thousands of long-term HIV survivors have done since the day of our diagnoses, I will acclimate to this “new normal.” I will touch and smell the flowers along the way, I will smile and wave at puzzled babies, I will thank strangers for their offers of help. I will roll along with the bumps and not complain.
This story is part of an ongoing series from the Diverse Elders Coalition, exploring different segments of the senior population.
Hank Trout is an Editor-at-Large for A&U: America’s AIDS Magazine and writes “For the Long Run,” a bi-monthly column addressing the struggles and triumphs of being a long-term (29-year) survivor of HIV/AIDS. He has lived in San Francisco for 38 years.
