The Mighty Logo

How I'm Learning to Trust My Wheels Like I Once Trusted My Legs

The most helpful emails in health
Browse our free newsletters

Isolation can be a very common problem for people with disabilities. Our lives changed forever the day we became disabled. Although I’ve been disabled for years, a turning point occurred when I had to start using a wheelchair 100 percent of the time about four years ago.

I have a progressive, degenerative neuromuscular condition called inclusion body myositis which primarily involves gradual deterioration of the muscles in my arms and legs. Four years ago, I had a bad fall that rendered me unconscious, and I ended up in the ER. After recuperating from my fall, my doctor asked me if I was ready for a wheelchair. He explained the dangers of breaking an important bone since my bones already showed signs of osteoporosis. When your muscle mass diminishes, so does your bone density. My legs were very weak, and I had to accept the fact that a power wheelchair was necessary.

From the moment I started using a wheelchair full-time, everything changed. Almost immediately, whatever social life I had vanished. Many old friends seemed to just fade away. I’m guessing people didn’t know how to react to the news of my wheelchair.

I began to notice that many people don’t quite know how to react to disabled people in general, and wheelchair people in particular. That happens a lot in my interactions with strangers in the street. I am aware that many people consider New Yorkers to be not particularly friendly, but that was never the case in my Manhattan neighborhood. While wandering around the streets or in the local shops, most people would at least acknowledge my presence with a smile and nod. Many would actually say “Hello.”

That friendly, personal demeanor seemed to immediately change when I started using a wheelchair. While “rolling around the ‘hood,” I suddenly felt invisible. The very same friendly faces I had seen on a daily basis for years seemed to avoid actually “seeing” me. Some looked away; others seemed to look through me as if I were a ghost. If there was a moment of eye contact, I would instinctively smile, but that seemed to have no effect. Some actually turned their heads in another direction. I eventually concluded that these people, my neighbors, may have a problem digesting the fact of disability, and react by mentally erasing me from their more comfortable and familiar reality.

I very rarely get out of my immediate neighborhood, but I always make a point to get out and about as often as possible — every day, if the weather cooperates. We are lucky enough to live close to one of my favorite places in New York, the magnificent museum called “the Cloisters.” The Cloisters Museum is an extension of New York’s Metropolitan Museum of Art and houses the Metropolitan Museum’s vast collection of European medieval paintings, sculpture and decorative arts. The buildings are actual medieval structures brought brick by brick from Europe. I never tire of going to the Cloisters, and just about any visit from friends and family can count on us visiting the place.

I know and love my own neighborhood very well, but recently decided it was time to spread my wings. I’ve become pretty adept at getting on and off city buses with my wheelchair and almost never run over any kids anymore. Maybe it was time to expand my world.

I decided to attend the LGBT Pride Parade this year. It had always been my favorite holiday. I went religiously from 1989 to 2005, when my mobility started to be compromised and I became scared of crowds. But the murderous anti-gay rampage in Orlando filled me with profound sadness, outrage, and then a feeling of helplessness. What could I do? I decided to get my crippled gay ass out of my “comfort zone” and march (roll) in the parade this year.

I had become pretty adept at getting around my immediate neighborhood, but getting downtown and being surrounded by thousands of people presented some unfamiliar challenges. But I was determined to do it. I bounced the idea off our dear neighborhood friend, Alex, and she asked if she could come with us. Alex provided support, encouragement and a dose of joyful anticipation that helped dampen any feelings of fear and anxiety.

We did some planning and we did it! New York City now has a fleet of wheelchair accessible taxicabs that charge the regular taxi meter fare. We booked the cab, the driver arrived on time and got us to the staging area of the parade.

We had decided to march with a disabled group of CUNY students (City University of New York,) but alas, we couldn’t find them. As fate, karma, and serendipity would have it, we ended up marching with a “Legalize Marijuana Now” group. It was wonderful and we managed to march the entire parade route from beginning to end. And it turned out that marching with a bunch of determined, devoted marijuana advocates had some delicious and aromatic fringe benefits as well.

We took the bus home, and although it seemed to take forever, it was great to see areas of the city I had not seen in years. When we got home, while basking in the triumph of the day, I was so happy and grateful for being able to take up the challenge of getting out and being a participant in life instead of a spectator.

I remember thinking, “What’s next?”

My husband Denis and I have a summer house in Cherry Grove, Fire Island. It’s a quaint, beautiful, hamlet of about 300 houses located on a barrier island 10 miles from the southern coast of Long Island. Historically, Cherry Grove, Fire Island is one of the most celebrated LGBT destinations in the world.

We’ve rented the beach house out on a seasonal basis for years now. I stopped going seven years ago, after a bad fall that resulted in 15 stitches on my chin and a very bruised ego. Since the fall, whenever my mind drifted to Fire Island memories, I found myself dwelling on the awkward feelings of shame, embarrassment and anxiety that accompanied falling in public. My feelings were a mixture of frustration and deep sadness that would land me in a state of deep depression.

Over the years, I retreated from the world outside of my immediate neighborhood and  concluded that I would never see Fire Island again. Getting downtown for a parade was one thing, but getting to Cherry Grove would be a little more challenging. Cherry Grove has no traffic because there are no cars. There are no cars because there are no roads. The community is only accessible by boat.

Actually getting to the boat entails a handful of challenges. First we need to book an accessible taxi to get to the commuter railroad station in midtown Manhattan. We have to arrange in advance for assistance in getting on and off the train in the motorized wheelchair — conductors have to set up a ramp/bridge to get from the platform onto the train. This trip would require two trains to get to our destination on Long Island. Once we arrive at the station on Long Island, we have to get to the ferry dock which is about a 20 minute roll in the wheelchair.

We did, in fact, get to Fire Island and had a wonderful time. I arrived at both the Gay Pride Parade and Cherry Grove armed with the conviction that I would be in a safe place. A place where I could relax and heal, surrounded by my people.

My recent adventures have affirmed my conviction that “home is where the heart is.” I didn’t abandon the safety and predictability of the concept of “home,” I merely expanded my home perimeter to include LGBT friendly places like the Pride Parade and the gay, summer paradise of Cherry Grove.

I now more fully understand that there’s still a world out there waiting for me. It’s time to trust my wheels, like I once trusted my legs.

This article originally appeared on Positive Lite.

Originally published: October 10, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home