It became difficult to envision many milestones in my life after I was diagnosed with pulmonary hypertension (PH). Getting married, having a career, moving out, and having children all felt just out of my reach. Truthfully, I can still feel those things at the tips of my fingers, gently teasing me as they remain a bit beyond my grasp.
Another thing I couldn’t picture for myself after diagnosis? A “good day.” I truly felt as if the best day of my life must have happened – and I missed it. Especially because I will probably miss out on so many milestones I expected from life.
As someone who has struggled with depression and anxiety most of my life, the gray filter over my landscape felt much darker and difficult to look through. Did I really have anything else in life to look forward to? Most of the people I know refer to their marriages or having children as the best day of their lives. I wondered, what would be the best day of my life? Did it already happen? Would I ever be able to have a really good day ever again?
I am not sure what the best day of my life will be, but I have had some truly wonderful days since my diagnosis. It may have taken a while, but better days happened, and they were far better than I could have imagined. The magic from these momentous occasions is also due, in part, to my new outlook on life.
A lot changes after diagnosis, including your perspective.
I was diagnosed with PH a few days before Christmas and had my right-heart cath on Christmas Eve, so the holidays can be an extremely confusing time for me. I find myself stuck between trying to find holiday cheer, playing She & Him Christmas albums while wrapping presents, and sobbing while watching Season 2 of “Skins UK” when Sid breaks down as Crystal Castles plays “Alice Practice.”
This year, I decided to dig a little deeper and try a little harder. I had the urge to celebrate, but I wasn’t really sure exactly what I was celebrating. I just knew that I didn’t want to focus on everything that I have lost since my diagnosis. So I called a hotel in Niagara Falls and asked for their nicest room, which was booked, but the second nicest room ended up being pretty great. The hotel asked if my boyfriend and I were staying for a special occasion, and I replied, “Yes!”
My boyfriend Spencer and I ended up having a really wonderful trip together. Traveling during the holidays always feels magical to me because of the snow and the special decorations placed in hotel lobbies.
We spent the evening enjoying our giant room dressed in our jammies while eating room service in bed and watching a marathon of “Guy’s Grocery Games.” It led us down a Google rabbit hole of googling Guy Fieri and reading hilarious reviews on Yelp for his restaurants. Part of me wondered if I would have been able to enjoy something so simple before “all of this” happened. This lasted for hours, falling deeper and deeper down the Google rabbit hole. We eventually fell asleep with sore stomachs and cheeks from laughing so hard.
I woke up in the middle of the night, and I instantly knew why. My oxygen tank had run out of oxygen due to a defect. As much as I tried to spend my little trip living in the moment, there was no denying that I am sick. Here was a reminder that my life is different; I’m sick, it is serious, and my life may never be the same. Tears rolled down my face as I rolled over in the bed, rolling away from facing my faulty oxygen tank.
Spencer had left the giant two-story curtains drawn open because of the gorgeous view we had from our room. I watched the city lights and mist from the falls over Spencer’s shoulders – making a mountainous landscape. Despite my crushing anxiety, I felt a sense of peace after remembering how loved I am to have someone stick by me through all of these unwanted health changes.
Life is different, and of course, PH is terrible to live with. But in that moment, I still found a reason to feel happy. It was then that I realized my perspective had changed, too.
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.