I am particularly sensitive to feeling left out of activities with friends. This started when I was a young, sick kid. I walked at the very end of the group while a day camp counselor scolded me for not keeping pace. After my pulmonary hypertension (PH) diagnosis, doctors initiated continuous IV therapy and I could no longer swim in pools with my friends. At age 6, swimming was a big part of my world. It seemed like other kids hosted endless pool parties I either avoided or attended only to sit on the edge, dipping my feet into the water.
As I write this out, it occurs to me that I had a pretty charmed childhood of day camp attendance and pool parties. I guess this is why I write and go to therapy — to complain about all the unfair things that have happened, only to realize that many of the wonderful things that have happened to me also are unfair.
I’m not talking about the “sick kid perks” that often come up in disease support groups: “If I didn’t have PH, I wouldn’t have attended PH Conferences, so I wouldn’t have gone to Orlando, Florida … Doesn’t getting to go to Disney World just make all the sickness worth it?” Oh my goodness, I would trade all four of my trips to Disney World — including my Make-A-Wish trip — to have never heard about pulmonary hypertension.
No, I’m not talking about my Make-A-Wish trip or the vending machine chips my mom bought me after blood tests or the free metered parking that comes with my disabled placard.
It’s unfair that my relationship with my sister has strained under years of medical crises that separated our family between hospitals and friends’ houses. But it’s also unfair that our relationship has been strengthened by years of medical crises that make us acutely aware of our mortality and grateful to be alive today to create memories together.
It’s unfair that my family has been strained by the financial burden of my genetic condition since I was born and that they continue to worry about my insurance coverage and medical expenses. But it’s also unfair that my family has an extensive and generous social network who have contributed to frequent fundraisers to support my family and organizations dear to us. Our friends have come through for us again and again in ways that surprise and humble us. Totally unfair.
Life is not fair. It’s filled with heartbreak and very low lows. High points that aren’t a result of gratitude following deep valleys are the exception. I don’t often think, “Wow, that is just objectively a really awesome thing that I didn’t work for.” Even when I feel I get inexplicably lucky — for instance, when I survive a heart-lung transplant or a reputable source publishes my photographs or I meet a man who adores me in all the right ways — I know it didn’t come without effort and prior disappointment.
It takes a certain attitude to think, “Wow, I survived open-heart surgery,” instead of, “Holy (…), I just had my chest cut open. WHYYYYY?”
I’m not saying that I had that attitude at the time, or that I have it all the time now, but sometimes I do seriously sit in my car and thank the universe for a great parking spot. I smile because the first of two possible keys unlocked a door. I celebrate clean pajamas straight from the dryer. Sure, those may be crystal clear instances of good fortune. It’s a little harder to be 6 years old and thinking, “Wow, it’s so great that I can’t swim with my friends because I am going to grow up with empathy for other people who can’t do everything they want to be able to do, and when I am 25, I am going to have something to write about.” But we can start small, right?
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.
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