It’s taken me over 20 years to accept and say out loud that “I have muscular dystrophy.” The progression of my disease was so slow, and I would become acclimated to my modified way of walking, talking and moving my arms, so I would often forget I even had MD. Until I began having significant difficulty walking, I equated my experience living with this disease to living with a large, gnarly, prominent scar – it’s there, sometimes it might be uncomfortable, but you’d probably forget about it until you saw it in a mirror or got the “I wonder how he got that” stare from strangers. Because my disability was insignificant to me, I was never very comfortable talking about it. Having “that” conversation made it more of a reality, and I was perfectly happy living in my fantasyland of denial. Transitioning into a wheelchair, however, has forced me to accept my reality and become more comfortable with engaging in conversations about my health. I’m learning to accept and be comfortable in my new normal, but it’s definitely been a bumpy ride getting here (for me… and for everyone around me).
I’ve learned over the years that people never really outgrow the innate sense of curiosity they have as children (that same curiosity that embarrasses parents when their kids stare and point at someone who looks different and then yell “Mom, what’s wrong with that person?” loud enough for everyone in the grocery store check-out line to hear). As much as I tried to live in Denial Land, my facial weakness and inability to smile always invited inquisitive stares or comments from strangers that quickly brought me back to reality. I remember once shopping in a Miami mall in high school when a sales associate approached me first to offer assistance, until she asked, “What happened to you?” I responded that I had muscular dystrophy before she continued, “Oh, how is that different from multiple sclerosis?” My response was short and along the lines of, “I don’t know. I don’t have multiple sclerosis.” Maybe it was the look as though my eyes were going to shoot lasers at her head, but she finally realized I was not there to offer a neuroscience lesson and she walked away, leaving me in tears and back to my reality in the midst of the Macy’s Juniors department.
Once I learned not to fault people for being curious, I wanted to satisfy their curiosity and become more comfortable with opening up about my disability; after all, it wasn’t going anywhere any time soon, so there was no point in fighting it. A mentor in graduate school helped me meet my new goal by challenging me to talk about my disability with a certain number of strangers in one week. We discussed how initiating that conversation can help break the ice and help strangers get to know me easier. My husband encouraged me to take on this challenge and decided to take part in it as well. But determining just how to initiate the conversation was the real challenge. If I wasn’t going to walk around with a nametag that says, “Hello my name is… Meredith and I have muscular dystrophy,” then when was the right time to bring it up? Somehow we determined the right time was at about 1:30 am at a hotel lobby after party following a friend’s wedding. With help from “liquid courage,” we marched outside to our fellow after-party-goers who were puffing on their cigarettes with one hand while sipping the remaining Bud Lights with another, when my husband announced, “Just in case anyone was curious, we want everyone to know that my wife has muscular dystrophy.” The Band-Aid came off and it was all downhill from there.
Seven years later, I’ve not quite mastered conversations about my health, but I know that practice makes perfect. At a recent visit to the park with my six-year-old twin cousins, who affectionately refer to me as their aunt, I expected that I might have that conversation since it was my first time sporting my scooter around the twins. (Side note: My twin cousins are not your average six-year-olds; I’m fairly certain they are going to be brain surgeons or run the country someday.) The questions sure came up as we left the playground and headed towards my car.
“Hey, that’s cool!” said one of the twins, referring to my scooter as the other snacked on seaweed chips and dried edamame (I am not making that up). I was comfortable discussing with the twins how I can still walk short distances such as within my house, for now, but if I go to a big place like a park then I need my scooter to help me walk. That’s when one of the twins asked the million dollar question…”Aunt Meredith, why can’t you walk?” I considered this question would likely come up, and I rehearsed what my answer would be, but for a moment I forgot the caliber of six-year-olds I was dealing with as I responded, “Can you fly? Well, just as you don’t have the ability to fly, I don’t have the ability to walk.” I knew immediately by looking at her face that my response was not going to satisfy her curiosity. I definitely underestimated the twins’ intellect, and perhaps I can use more practice.
As my six-year-old cousin begrudgingly accepted my weak answer and we continued to my car, which was parked in a handicapped spot, she continued, “Aunt Meredith, you are very lucky that you were able to park in a handicapped spot. There are always so few handicapped spots and people sometimes use them who really aren’t supposed to, so then people like you who really need them can’t use them.” At this rate, my cousins will be ready for that neuroscience lesson by age seven, and I’ll be ready to teach it.