I was 26 years old when my doctor delivered some of the most profound and difficult words to me. “Well, if you really want to walk, we can probably make it happen. We would have to amputate your left leg above the knee and replace it with a prosthetic. We would conduct a knee replacement on your right leg, but because you’ve already had so many surgeries on your legs, after about ten years, it would likely turn purple, and then black as the leg lost blood flow and died. We’d have to amputate that leg eventually too. I don’t really like to do amputations. They are quite gruesome, but if it’s what you really want, I’ll do it.”
There aren’t enough words to describe the true gravity of having to make a decision like this. I drove home that afternoon with a vision of my leg detached from body, laying cold and bloody on a surgical table, waiting for someone to come and discard it. There I sat with what was, for all intents and purposes, a completely non-functional leg, and yet, I couldn’t bear the thought of losing it. It was a part of me. It defined me. It shaped me. I had spent my entire life using a wheelchair. I knew how it worked and seemed to be getting through quite well. There was no guarantee that I would be able to use a prosthetic and eliminate my wheelchair. And at the end of the day, I was still the same person. The genetics were in me; the disability would be there, with or without legs. I decided to keep my legs, imperfect as they might be.
It’s been 12 years since I made that decision, and until a few days ago, I never once doubted myself. Never once regretted my decision to keep my legs. But this past Sunday, as I walked through an urban park on the outskirts of Atlanta, the sun setting quickly, and me left in the near dark of the woods, sobbing uncontrollably, full of anger, I wondered if I made the wrong decision. For the first time in my life, I couldn’t help but think I would be treated differently if my medical device with a pair of prosthetics instead of a pair of wheels.
An hour earlier, I was staring at my computer screen, trying to convince three strangers from the other side of the world that I was indeed capable of going on their excursion in November. I had been planning this trip with my family for over two years, COVID pushing it back over and over. I had invested thousands of dollars. And there I was, telling three strangers about the most painful part of my life, explaining to them everything about my disability, trying not to cry over a Zoom call. I didn’t have a single doubt – not one – about my abilities, and yet, because of the four wheels that help me through life, I had to ‘convince’ this group that I was capable. The call ended with “Well, we will let you know in the next two days if you are able to join us.”
I slammed my computer shut, the tears falling onto my laptop. I stormed out of my apartment, and drove for 30 minutes to get outside of the city. It was so unfair. So painful, to be told what I can and cannot do, by strangers who didn’t have a clue what ‘disability’ really means. As I walked through the park, no one around and the trees surrounding me, I sobbed. I ugly cried, just cried and cried. I hugged myself as I thought about how I wanted to move forward with this. I thought about what my mother would do, the person who has done so much fighting for me, and it hit me. “My momma gave me strength.”
I knew there was nothing left for me to do but wait. The decision was in their hands. It would be up to this group of strangers to determine if my family and I would be able to go to Antarctica. I decided that no matter what happened, I would be strong.
I called my family when I got home, knowing that this would be disappointing for them too. Like me, they had been waiting for over two years to go on this trip and the sudden activation of a contingency plan took us all my shock. I hated that, because of my wheelchair, they might also have to forego a dream. The situation was loaded with emotion, although my family always takes these things in stride. This isn’t our first rodeo and it won’t be our last…
And so I waited, wondering what their ‘internal’ conversations consisted of, hoping that maybe, just maybe, one of the people on the call could see past a wheelchair. Like clockwork, I received an email two days later with half a dozen stipulations about my being on the ship, but an ultimate ‘yes’ to allowing me to join. In addition, I was asked to provide a few videos of my kayaking and travel adventures (something I had offered during our call in hopes it would prove my capabilities).
I spent the day putting together a three-minute slideshow of a few of my travel adventures. I had made the decision to be strong through this, and with that, I was going into the entire trip with a positive attitude. I wanted to put this initial and unfortunate encounter behind me. As I pulled together so many photos from around the world, I started to see something that I was missing all along. All over the world, in the more than 100 countries that I’ve been to already, there are people who don’t care about my wheelchair. There are people in the biggest cities in the world and the most remote corners of the planet who have been able to see me – not me with my disability, but me.
My life has changed because of them. I am a different person because of the people all over who have taught me what knowing someone means, of what seeing someone means. As I was pulling together my snapshots from around the world, I realized that while a handful of people in this world aren’t able to get past the ‘oh so scary wheelchair,’ there are more that are blind to it. These people – the ones who have learned to see a person – have set the bar high. I am so lucky to have crossed paths with each of them; they have changed my life.
It was a brief moment where I wished I had chopped off my legs. I wouldn’t have had to pour out my painful past to a group of strangers that I paid thousands of dollars to. I wouldn’t have had to pull together so many amazing stories from my life. I wouldn’t have been reminded of how amazing people really are.
As I was walking through the park a few days ago, I thought about what my life would be like with prosthetics. I could easily cover them up, no one knowing what was under my jeans. How would I be treated differently? How would the world perceive me? At my core, in my blood and my soul, the disability would be the exact same. Yet, to the rest of the world, I would be upright, and I have to question if that would move me up just a few notches on the totem pole of life, increasing my overall value as a human in our society.
The labels we give to people, and we all do it, are so impactful. I am disabled. Tony is Latino. Our concierge is black. My mother is a woman. If we started to look at people, the core of who a person is, and envision them in a different body, would we treat them differently? I can’t help but wonder what my parallel life with prosthetics looks like. But I am damn proud of the life I’ve created with my wheelchair. My mother gave me strength, and because of that strength, she gave me an incredible life.
I’ve been off the radar for a few weeks spending some time with my loved ones while my passport is out for renewal. I’ll be back on the road in a few weeks with more stories to share about my journey.
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