In a word, embracing my disability has been a journey, but I’m finally at a place of acceptance and self-love.
People with disabilities are subject to discrimination, both subtle and direct. There may be stares or comment from strangers about having a deformity or needing an assistive device. For the millions of us who also have less visible disabilities like a difficult-to-manage chronic condition or vision impairment, we get labeled slow or joked at by friends as well as strangers.
My entire life I wanted to hide or just pretend like nothing was working. I feared judgment. I feared no one would love me and social situations were challenging even as a child. The flow of life was kept going by hiding behind the school, sports, and artistic success. Mostly the obsessive ideas about what it means to be normal overtook my mind. It also made it easier to accept the fact that I was handicapped.
The first major life blow after living with type 1 diabetes diagnosis as a child and young adult came at age 20. Diabetes coupled with an eating disorder led to serious diabetic eye disease. Forty eye surgeries later I was declared legally blind. After losing full vision in my left eye, I remember thinking, “Well, I can still drive so I will just keep going.”
Then there was the loss of peripheral vision in the right eye and with it the loss of the ability to drive a car. At age 21, living in Los Angeles, California, hanging up the car keys was emotionally devastating.
To avoid facing the reality that I now had multiple disabilities, I attended support group meetings. In one sense, the ability to keep moving coupled with the overachieving need to prove myself as a regular person, provided an emotional buffer. Without a car, getting to Los Angeles was challenging, but I got creative and managed to get myself where I needed to go, sort of. There was, however, a lot I was no longer able to do as a result of the vision loss. The isolation and sadness eventually took over and with it came a return to the more user-friendly NYC.
There was never an admittance to the pain and pure rage of having to bury my dream to dance professionally. There was never an admittance of feeling limited or disabled. My ego was crushed and I refused to accept the truth. In 2009, the unthinkable happened once more. It’s a well-known story. I lost substantial mobility in my right leg after being hit by a New York City bus. The details are the subject of their own story, book, and documentary film.
Again, unable to even attend a dancing class or stroll down the street, I did everything it took to get off the assistance devices and feel ‘normal.’ I buried my rage deep down fearing it would overtake my life.
Now visually deformed and with a significant limp, hiding this disability became a bigger challenge. I reverted to the prior means of coping. I needed to produce and prove to the world there was simply nothing wrong. There was little talk of the physical and emotional pain, intense social anxiety, and rage. Again, what kept life going were the projects, all born out of the disability I refused to fully acknowledge. The goal was to seem as normal as possible.
Yes, the need to build a new life was positive on many levels. But we know nothing is all good or bad. On a fundamental level, the fire to produce such big projects was righteous anger and the need to say look at me for what I can do. It was also a deep need to feel full and healthy, not disabled. Rather than accepting my newfound physical constraints, I just kept going.
At some point, this momentum was no longer maintainable. After over a decade of walking unaided and trying to move through the world my body simply started to give out. As the joints deteriorated it became obvious there was a major need for a lifestyle change. The recent news that I would need to be back on a walker to help save my joints was, as you can imagine, a huge emotional blow.
The immediate reaction was not good. My ego grabbed hold once more, asking, “How in the hell will I look normal with a walker?” People will believe I’m crippled now.” Suddenly there was no hiding. There was no convincing me I would keep going as I had. All classes booked to teach for the summer had to be canceled. I wasn’t sure I would even be able to walk more than a few blocks.
It was a lot for a girl to wrap her head around. I knew what was coming but once the news was officially delivered, I felt, yet again, like my body and my life had betrayed me. And so how many times do we find ourselves at these major crossroads? That is between the actual truth and the stories we tell ourselves.
Having spent most of the past year battling severe depression while managing pain and trying to get down to the bottom of both the physical pain and the root of the issues, here I was. I had answers. It was not what I wanted to hear and there was no other option.
After receiving the walker, something strange and new occurred. For the first time in my life as a disabled person, I didn’t have to hide, ignore, or work around my physical problems. After literally hating the word “disability” for decades, the journey brought about a feeling of acceptance like never before. Maybe it’s because of getting older, or maybe it’s because I’ve come to accept this as the full truth of the situation.
This dancer girl, whose life has been both physically and figuratively about moving, needs to stop running from the truth or trying to outsmart it. I am openly telling myself and everyone else that I have a disability. It’s not everything I am, but it’s a significant part of my daily life.
My new walker is named Lucy. When I need her, I know I can count on Lucy to be there. Yes, I am still standing and intent on a joyous and fulfilling life, as a person with seen and unseen disabilities. And so it is….