Going through multiple hip surgeries, surgery for my endometriosis and long-term chronic pain opened my eyes to a world I had previously been blind to. A world that can easily go through their annual salary on medical bills, that navigate insurance issues frequently and most of the time feel underrepresented and unseen.
People who deal with chronic issues like a disability, pain, or illness are frequently not seen even as the numbers climb.
I was so very lucky to have the support system I did for both financial and emotional support. I have every certainty that I wouldn’t be alive today without it.
I vowed that I would be an advocate and speaker to bring awareness because together we are stronger. Since my hip reconstruction in 2018, I’ve been working with a pain advocate group to help prevent the government from taking opioids away from those who need them and I’ve recently felt the calling to start sharing others’ stories on my website.
I am pleased today to be sharing Jessica’s stories of her experience with CHILD Syndrome and to bring greater awareness to my readers on our lack of attention on amputee fitness. She is a beautiful soul with a message you need to hear!
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My name is Jessica Ping-Wild and I have CHILD Syndrome.
You’ve never heard of CHILD Syndrome? I’m not surprised. The rare disease only affects about 60 people worldwide with skin and limb deficiencies on only one side of the body.
Apparently, my case is quite mild. I have a shortened arm and leg on my left side and both shortened limbs are covered in red, swollen, and itchy skin.
Unfortunately, mild as it may be, the pain is anything but, leaving me often unable to wear my prosthetic for long periods of time. Instead, my primary method of transportation is either an electric or manual wheelchair depending on what the situation calls for.
Growing up, I wanted to be as much like the other kids around me as possible. So, instead of using my prosthetic or my wheelchair, I hopped around. Not to toot my own horn, but my balance was, and remains to be, impeccable. I would scurry around on my one foot all over the playground and was known for challenging my friends to hopping contests (I always won 😎).
As I entered the teenage stage of my life, playgrounds became a thing of the past, so I joined sports instead.
I tried out for volleyball in 7th grade and didn’t make the team. It was hardly surprising, but I was still devastated.
The next year, I auditioned for the cheerleading squad. Those results were much more exciting.
Though school run athletics were fun for a while, my true passion was competitive dance. I danced competitively with a local studio for about 6 years. Let me be very clear, I was not an all-star dancer, but for having one leg, I did pretty well and I can proudly say that I never once fell over during a performance.
High school came and went, and so did the days where my activity level was high enough where I could ignore my calorie consumption.
If you’ve ever gone to college, you know how stressful those first few months can be. In my case, I went to the University of Notre Dame. This is not a slam on my high school, but I was not prepared for the intensity of the classroom dynamic I was thrown into on my first day at university.
Almost instantly, I fell behind and my grades suffered. I went to tutoring, peer study groups, and spent hours working on assignments. School was expensive, so I worked an on-campus job during the evenings. Trying to juggle my academics, work, and extra-curriculars while navigating a brand new social life was stressful. By the time fall break came around, I was overwhelmed and exhausted. The first day I was back in my own bed at home, I slept for 17 hours straight.
When I returned to campus a week later, I got my academics somewhat under control, but I let my health fall to the wayside. The Freshman 15 is real, friends, but for me, it was closer to the Freshman 25.
I had no idea how to handle the extra weight I was now carrying all over my body. Stress-eating was obviously the culprit, but stopping that seemed next to impossible with my schedule the way it was.
My doctors had always warned me about gaining weight. According to them, even an extra 10 pounds could DRASTICALLY affect the pressure placed on my knee. It’s a well-known fact amongst my family and doctors that I will one day require knee surgery for the hopping I did around the playground as a child and on stages as a performer, but the hope was that it would be in my distant future.
The reality was, if I didn’t get my weight under control quickly, that knee surgery date would come sooner than any of us wanted. Think 30 instead of 45.
I expressed my concerns to my roommates and they told me I could start working out with them in the afternoons. Later that day, we all ventured to the gym together. I was in my electric wheelchair as I was planning on doing some floor exercises to start myself off slowly. Once we arrived, I realized a major problem.
The gym wasn’t accessible. I tried to park my chair outside under an awning and hop around inside, but the stairs were EVERYWHERE and I could already feel my knee starting to ache.
I left pretty quick, though I arguably did get a workout in.
My friends and I began using the small workout room inside our dorm instead. Inside, it had an elliptical, two treadmills, a few mats, and a few free weights.
I had no idea what to do.
Remember, dance was the only exercise I was used to. So, without someone feeding me instructions, I was lost.
I’d never even picked up a weight before and now I was supposed to start flinging it around? Yeah right.
I opted to put my prosthetic on and walk on the treadmill. It hurt terribly and I usually could only go a half-mile to a mile before I quit. Obviously, I wasn’t burning calories very quickly and I was still consuming the same amount of food. So, while I stopped gaining weight, I wasn’t losing any either.
One of my friends started following a workout regimen doctored by an online fitness guru. She invited me to join in, but from the first video, it was clear it was designed for people who had all of their appendages.
Summer eventually rolled around and I was getting desperate. I confided in my parents and together we decided I needed training and guidance from a professional. A week later, I was a member at a fancy gym that had offered personal training sessions in-house.
It was ridiculously expensive. My family doesn’t have a lot of money, but we have always taken health very seriously.
So, that was that. The 2016 Summer of Fitness began.
I actually really liked the trainer I was set up with and she was willing to learn with me. But, that was also the problem. She was learning as I was learning.
Her concoctions were definitely creative and most of them worked. I lost about 5 pounds that summer, which seemed small, but at least it was progress.
When I returned to school in the fall, though, I was back at square one. The new school gym didn’t have all of the contraptions my trainer had available to her. I focused on the few things I knew I could continue (rowing, cycling, etc), but ultimately, I felt defeated.
Most gyms are not designed with the disabled community in mind. Fitness is important for all bodies, no matter what their outside appearance may be. Like much of the world, accessibility is an afterthought and only becomes relevant when a disabled person actually comes knocking on the door.
The problem with this reactive mentality is that disabled people are the ones that truly lose in the end.
Many people in the fitness community claim to be body positive and inclusive of all shapes and sizes.
I am here to tell you, most aren’t. They may be well in tune with differing sizes, but they are completely clueless about different shapes.
My life has been one big adaptation. Sure, my creativity skills have benefited greatly from this fact over the years, but it is exhausting constantly trying to adapt and find a new way to do the same things as everyone else.
Fitness is already taxing on the body, especially when you’re out of shape and embarrassed. Adding in even just one more hurdle, specifically one as frustrating as inaccessibility, and it’s enough to make anyone believe the worst about themselves.
I am no guru, but over the last three years, I have managed to find my stride thanks to a handful of trainers and my own episodes of trial and error.
Body shape and functionality are vast, and I believe it’s time the fitness industry began recognizing that very real fact of life. Sometimes, it’s not about the GAINZ, sometimes it’s just purely about health and wellness, which is a right everyone deserves access to.
You can find Jessica at The Rolling Explorer and follow her on IG for lifestyle “with a disabled twist”. Every time I read her blog I find myself learning something new that increases my awareness of the world around me!
Up until now, I’ve never thought how difficult traditional gyms could be for amputees and how cost-prohibitive personal training might be for someone who would definitely benefit from that type of one-on-one training. I asked a lot of my personal trainer friends if any of them had gone over how to train an amputee and none of them had been given any guidance on that topic.
This makes me incredibly sad because fitness is something that should be available to everyone!
Please share this so her message can spread and be heard!
Have questions for Jessica? Let her know in the comments!