Feeling Different and Wanting to Tell My Story

The memory is impeccably clear in my mind, tied up tightly in the damp smell of chlorine. I’m sitting on a bench in a humid concrete room while my peers splash boisterously around in the pool. They in their swimsuits, me in the required gym uniform. They, “normal.” Me, “the other,” and feeling different.

I can’t imagine that many middle school kids in the Midwest look forward in February to changing into a swimsuit in a dank locker room, jumping into a pool for an hour, and then walking around school with wet hair for the rest of the day. As for me, I hated swimming in school more than anyone else ever has, for another reason.

The reason I had to sit out was my central line, which delivered my life-saving IV therapy. The line, and the pump attached to it, could never be submerged in water. This was explained in a doctor’s note every year, approved by the nurse, and passed on to my gruff gym teacher, who seemed to hate letting anyone off the hook for any reason.

Being unable to swim invited mixed opinions from my peers. For some, it simply set me apart as different — “the girl who can’t swim.” For others, it was a source of envy. “You’re so lucky you don’t have to get all wet!” Neither opinion made me feel particularly understood.

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Understanding my differences

For me, pulmonary hypertension (PH) has mostly been an invisible illness. In earlier years, I wore my pump in a backpack that all my peers knew not to touch. But by middle school, it was replaced with a smaller one, which I soon tucked away in my waistband with no one the wiser. Other than that, there were few obvious indicators that I was ill.

I was never shy about PH. I was always happy to answer questions and I never tried to hide it. But that doesn’t mean there wasn’t a gap — a space where people were free to make their own assumptions about me.

This made things like middle school gym class difficult. “Why is she sitting on the bench when we all have to swim?” “Why is she walking one lap rather than running the mile?” I felt like I was set apart, but unable to defend my otherness.

It’s difficult for kids, and even adults, to understand my differences. They saw my blue lips and placed them in a red box marked “Unknown! Different!” Of course, they didn’t know enough to realize my blue lips were caused by being short of breath.

Surviving my ‘otherness’

I’m proud to have survived a childhood with these experiences, and I’m grateful to have been surrounded by family and friends who explained my illness on my behalf.

I know each moment I spent feeling different shaped me into the person I am today. Those who are reading this and who have had the same experiences can likely relate to what I’m saying here. We are not just survivors of physical illness, but also of society’s aversion to people with illnesses.

I also know these experiences have made me even more vocal as an adult, and I’m grateful for that. I prefer to fill in the gaps myself. This is not to say that the assumptions made by others are always wrong or malicious, but I would rather be the author of my own narrative.

On many nights, I can be seen by passersby walking my dog around our neighborhood. We’ve only lived here for seven months, and I often wonder as someone passes me what they make of my tracheostomy and the oxygen tank on my back. I can imagine what some people might think when they see me. My mom jokes that nowadays, most people probably just assume I’m a COVID-19 long-hauler rather than a heart-lung transplant recipient.

I know it is inevitable when you see someone who looks different to have questions and to make assumptions. That’s why I invite people to ask me questions. Talking about it and explaining how I got here will always help me to feel not so much like that girl sitting on the bench while the rest of the world splashes away in a pool.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.