Maintaining my passions through a lifetime of health changes

When I was 5, my mom signed up my older sister for gymnastics. Watching from the side, I asked if I could join, too. But living with a central line and jumping on a trampoline seemed like a recipe for disaster.

Not much later, my sister switched to dance. This checked the right boxes for me, given my relatively new diagnosis of pulmonary hypertension (PH). It wasn’t a contact sport, and it wasn’t too strenuous. Before long, I was registered in classes as well. From then on, I was a dancer.

Many nights a week, for years, my mom would drive us to our local dance studio to attend classes. I learned jazz, lyrical, pointe, and more. It was a huge part of my social and extracurricular life. And while I was a very average recreational dancer, it was something I loved dearly.

Recommended Reading

June 16, 2023 Columns by Karen Schultz

Meeting each other on this ‘lung road’ to improved health

Early on in high school, dancing became harder for me. As my PH continued to progress, my breathing and endurance worsened. Slowly, I found it more and more difficult to get through class. By the next year, getting through even a single routine was daunting.

I dropped classes slowly, letting go of some of the more rigorous styles but holding on to my favorites, like ballet and pointe. During my junior year, about eight weeks before our big recital, and after one of the only fights I’ve ever had with my mother, I finally let go of dance completely.

This decision was really difficult. Not only did I have to give up an activity I loved, but I also knew I was losing those last years with some of my best friends — girls I had danced with my whole life. Unfortunately, the choice wasn’t mine to make. My body knew what it needed from me.

For the rest of the year, I visited the studio often, and I ended up assisting backstage during recital week. It was a small way to keep in touch with that part of myself that I had been asked to let go of.

To this day, I maintain a strong appreciation for dance. I watch dance competition shows, follow ballerinas on Instagram, and regularly consume dance content. I’ve seen several productions of “The Nutcracker,” and I love dance-dominant musicals. I think it’s an incredible art form, and I make an effort to still interact with it regularly.

Traveling by YouTube

Dance isn’t the only interest I’ve held on to despite my fluctuating health. I was fortunate to travel quite a bit growing up but was never able to go abroad. I always imagined that after my heart-lung transplant, this would be something I would be able to pursue. There are so many places in the world I would love to explore.

Now, because I’m reliant on multiple medical devices and continuous oxygen, the farthest I’ve been able to travel in the past five years is a five-hour car ride north. So I get my fill of travel via YouTube. Since being in the hospital in 2018, I’ve followed multiple travel accounts.

My favorite account is run by a couple named Kara and Nate, who have been traveling the world full time for years and documenting the journey along the way. Through them, I’ve seen so many remote and beautiful locations, some of which I never would have heard of otherwise. They’ve taken me on trains and planes, and most recently, a 36-day bike ride across the U.S.

This attitude is something that serves me well in times of illness. When I’m in the hospital or not feeling well, I often settle for consuming content related to what I wish I could be doing. Whether it’s watching artists on TikTok or researching new recipes, I’m able to keep my passions alive in my mind, even when my body has to take a rest.

Consuming experiences like this secondhand will never hold up to the real thing. But it’s a satisfying way to scratch the brain and round out my life in a way that feels a bit fuller than it would otherwise.

More than anything, it’s a reminder that we’re all living a different life, and we can all be storytellers for one another. My grief for losing my ability to enjoy these experiences is partially offset when I know someone is out there enjoying them. And I’m so glad when those curiosities find their way back to me and I get to hear all about them.

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.