Reflecting on "What-if" About Being Disabled, But Just for a Second

A somewhat common conversation occurs in the disability community, and it starts with the following question: if you could take a magical pill that would no longer make you disabled, would you take it? How someone answers is dependent mainly on how they feel about being disabled. Factors like where they are in their life's journey and other personal circumstances can impact their response. After all, everyone has their own process, and their own lived experiences. The hope is that the conversation can evolve with active listening and understanding rather than judgment.

As for myself, I have always answered the "pill" question with a pretty solid "no, I wouldn't take the "magic pill." Mostly because I believe that my disabled life experience is rooted in my identity. In short, so much of who I am and how I view the world, and my place in it, is inextricably connected to my disabled life experience. One that I have great pride in, by the way.

But even though I wouldn't take the magic-no-more-disabled-pill, it doesn't mean I haven't grappled with a different, perhaps just as complex "what-if" scenario. And actually, it's not so "what-if" as in impossible, or even improbable. Let me explain.

I was born in 1976 with a very rare muscle condition that caused my muscles to atrophy. Between the ages of four to five, when my body's skeletal system was kicking into a faster growth pace, my spine was like, "oh, no, not so fast, young lady." It started to curve dramatically, spiral actually, causing a double-curved Scoliosis. And while the muscle condition did not progress as I got older, there were artifacts of it that damaged some of my muscle tissues. The muscles that run alongside my spine were affected the worst.

When I was undergoing treatment for my Scoliosis, the common interventions were bracing and surgery, if necessary. For most kids bracing was enough. The external pressures of the brace would help support a child's spine and then correct it to be straighter as the child grew. Doctors tried bracing with me. The brace mocked the attempt. So from the age of five to 13, while other kids went off to summer camp, I went to Children's Orthopedic Hospital in Seattle, Wash., to get my annual spine tune-up.

Of course, I am thankful the surgeries worked. I'm here writing this post, after all. Doctors got the best correction they could and then fused the vertebrae in my spine. My spine is still very twisted, and I have a visible hump where my rib cage is torqued out of place, but thankfully, I don't live with any back pain or nerve damage. I know many people who live with Scoliosis in adulthood who have nearly invisible curves but debilitating back pain.

You rarely see people with my kind of Scoliosis anymore, however. The medical advancements and technology to do complex surgeries on babies, toddlers, and young children simply did not exist when I was young. Additionally, the exact and reliable neurological testing and observation while in surgery did not exist. When doctors were operating on me, all they could do was trust their own eyes and the principles of basic human anatomy. As such, paralysis was always a huge concern. The FIRST question I ALWAYS got asked when I woke up from anesthesia was, "Jody, can you wiggle your toes for me?"

So while I don't ask myself if I could take a magic pill, what I do wonder sometimes is, "what if I had been born just twenty years later?" Knowing that more kids won't go through what I went through makes me feel good, but it also makes me feel somewhat isolated. I only know one other woman my age who has a type of Scoliosis similar to mine.

It was hard not to have many role models with my disability to look to for hope or encouragement when I was growing up. There was one woman, however, and her name was Fran. She was a receptionist who worked at the rehab center I did aquatic therapy at when I was in the second grade. Yes! I remember her all these years later because she gave me hope. Even though I don't think I could fully understand my feelings about her, at the most basic level, I said to myself, "Fran is like me. Fran is okay. So I am going to be okay, too."

My ponderings of birth timing don't happen that often. But when they do, sometimes I let them linger for just a moment or two. I think it is healthy not to suppress feelings of the heart, even when they collide with knowings in your head.

I know that I was given the best opportunities by so many people, my family, friends, doctors, teachers, mentors, and more, to live my best life. I've done my best not to squander those opportunities, working to create a life I feel accomplished in, proud of, and at the end of the day, happy.

I also know that my Scoliosis has given me many gifts. It has made me stronger to deal with adversity. I have a deeper level of empathy as well as a discipline for patience. Lastly, I have a greater sense of self-love because of my "different" lived experiences. I learned to love myself at times when no one dared to try.

I have a favorite quote: "Every difference makes a difference." A million tiny details brought me to this day—actions and choices, both in my control and completely out of my control. There is no telling what my life would be if I had been born in 1996 versus 1976, and they had the ability to correct my Scoliosis completely.

I choose not to focus on what I will never know. I choose instead to live in the space of gratitude and acceptance. I'm a work in progress 45 years strong. I am thankful for all my lived experiences, including being old enough to remember what it was like to read a paper map, dial a rotary telephone, and program a VCR.