President’s Day weekend was supposed to be monumental. I intended to write a feel-good column about coming full circle. It was my first time skiing post-transplant in the mountains around Lake Tahoe.
Nineteen years ago, my family planned to go to our good friends’ cabin in Tahoe. That changed when, after a second opinion and months of unanswered questions, a cardiologist diagnosed my pulmonary hypertension (PH) at long last. My parents entered a nightmare and another family went to Tahoe in our place. Year after year, our friends vacationed together in Tahoe while my family stayed at sea level.
Fast-forward to this February: My boyfriend drove me past the 5,000-foot elevation sign. We were headed toward Lake Tahoe to meet my parents and the same family friends at their cabin. I took a photo of the sign but it didn’t make me quite as emotional as the first four times I passed that threshold with healthy lungs.
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Wait times were minimal. It was a beautiful day with low temperatures but blue skies, slopes sparkling with fresh powder — perfect conditions. The first time I tried to clip into my skis, I wound up sitting in the snow, crying. I complained and pouted.
Basically, I threw a fit right outside the lodge, my boyfriend trying to encourage me as I insisted skiing was a terrible idea. I was suffering from heavy clothes, unwieldy skis, cold hands, and boots that hurt my feet. Crying swelled to sobbing as I realized how many years I spent feeling like I had missed out because my condition prevented me from going skiing in California. The story I had been telling myself was just that — a story.
It turns out I don’t really like skiing. We took a lesson and that was fine, but riding a bike exhilarates me more. The steeper slopes terrified me. My muscled tensed and I panicked. I got stuck in deep powder more than once, and I wasn’t truly enjoying myself until I sipped coffee back in the lodge.
Worse still, I did enjoy skiing as a kid. I believe now it was partly because I had PH. My parents planned trips to the Catskill Mountains to coincide with appointments at NewYork-Presbyterian Hospital and Columbia University Irving Medical Center. Yes, we traveled from California to New York multiple times a year to see my PH specialist. Have I said enough about how wonderful my parents are?
Windham Mountain in the Catskills tops out at 3,100 feet, a safe elevation for me. Windham Mountain Resort partners with Adaptive Sports Foundation to offer private lessons to people with cognitive or physical disabilities. I got to ski all day long with a volunteer instructor or two — and sometimes three (I was a cute kid) — for a fraction of the price of a group lesson. I don’t think I ever carried my own skis before this year.
Why did I spend 19 years of my life believing my illness compromised my childhood? Why was I jealous of my younger sister who got to go on ski trips without me? Why didn’t anyone tell me to shut up and check my privilege? Maybe they did.
Painful ski boots aside, I enjoyed the weekend immensely. Some of my favorite parts included completing a jigsaw puzzle and playing a seven-letter word in Scrabble. Those are activities I did when I had PH. I have been adamant that I excelled at puzzles and board games as a child because I couldn’t do “normal kid things.” Now I find myself choosing the same activities, even though my options are less limited.
The gift of physical transformation and health in my 20s cultivates new perspective. Though identifying my core beliefs as stories evokes sorrow, anger, and confusion for me, it’s a process I feel lucky to experience. I’ve written about it before and I’m excited to share more of it with you in the future.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.