Living with pulmonary hypertension sort of feels like living in an unstable house on a hill near water. Some days you feel like you are just waiting for the rain to come and wash your house away. When I was diagnosed I told that it was all downhill from here. While that hasn't exactly been true for me, it is really distressing living with something that is never supposed to get better. It is even harder when doctors remind you that things are only supposed to get worse.
I try to stay optimistic. I think about all the wonderful people who I have interviewed for my old blog and remember that sometimes the human body is amazing. I've talked to people who had 24 hours to live over 20 years ago. Sometimes the rules don't apply to certain people, for whatever reason. I try to remind myself, that just like any disease, PH affects everyone so differently. Statistics aren't about individuals.
For some of us it takes time, but you befriend wonderful people who understand what you are going through. Sometimes you are lucky enough to befriend people who excite you with the way they navigate through their hardships. Sometimes these fantastic people pass away, far before their time. It is unfair. Your heart hurts for them and their family. All those unanswered dreams left floating in the void because some shitty disease decided to take away another person.
It is always sad when you lose someone. It feels even worse when that person is young, and in self-interested ways, it reminds you that your house is built on an unstable foundation. Suddenly the seriousness of your disease kicks back in. The fear. The anger. The uncertainty. Everything all at once.
When I was first diagnosed with PH there were a lot of TV marathons in my future. This is partly because I had gone somewhat mute to avoid crying or screaming all day. It was also in half because I was diagnosed during the holidays, meaning MTV Canada's lineup was stacked! I got sucked into a World of Jenks marathon with my mom. One episode introduced a young adult named Kaylin Andres who had aspirations of becoming a fashion designer. A few segments in we learned that she had battled cancer several times, and that there were concerns about the disease returning. My mom asked if we should change the channel. I said no.
I was quickly drawn to her on The World of Jenks. At the time I was in my mid-20's. It was hard finding someone else who was a young adult that understood how it felt to be told that you have a fatal disease. I got to connect with her on social media after my diagnosis and got to know her a bit better (years after her episode had aired.) She had already had cancer cut, killed and poisoned out of her several times since that episode had first played.
We often spoke about how living in a sort of limbo was the worst part of living with a diagnosis like ours. Although we were living with two different diseases, there is a bond shared between people who understand how the concept of time changes once you are told that something is fatal. We shared how we were afraid to make goals, to dream, to make certain plans. Our lives in constant limbo, waiting for that piano to drop out of the sky. Someone might ask you an innocent question about where you see yourself in a few years...and its hard. The first place my mind wonders is "will I still be alive? Will I still be as functional as I am now?" This isn't something people in their 20's should have to fear, but sadly, it is. We're constantly reminded of our rickety floorboards and our flimsy foundations. Always waiting for that wave to wash it all away.
Although I never got to meet Kaylin, I learned a lot by observing her. I've also noticed that a lot of these characters overlap with some of the amazing people that I have spoken to with PH.
One of the biggest markers that I've noticed is how people have the ability to become a great adapter after their diagnosis. While it be hard not to miss your old life, abilities, body, health, future etc I've seen so many people adapt to their current situation. I know someone with PH who had to leave a teaching a career that she loved because it was too risky to be exposed to so many germs constantly. She grieved that loss the best she could, but she also adapted. She started her own business, and learned more about topics that interested her and could help her health.
Kaylin pursued a career as an artist after working in fashion. She was able to use art as an outlet, but also as a way to connect to other people. To connect with other people like her, and like me. When her cancer came back for the last time she was told that "this was really it." Her response? She still traveled and even had an opening reception with a collection of her works. Her pieces haunted me because without words because I just "got it." In one of her last blogs she seemed mostly pissed off that she had more to create, and that cancer was going to rob her of that.
Fatal diseases become the great thief. They remind us of how hard it is to dream, have goals, and even make plans. When we lose someone special, especially someone from the same illness community as you, it makes those grievances so much worse. I ask myself why a woman in her early 20's passed away from PH? Why couldn't the world grant her that football trip she was so excited for? Why? I feel a sense of anger, bitterness, sadness, fear and maybe even guilt. When someone passes away from the disease you have it reminds you once more of the reality of it all. You're reminded its incurable and fatal. You are reminded that wonderful, beautiful, bright and loving young people are taken away because of it. My foundation is unnerved.
I look at the wonderful people who have passed on and I am reminded of the lotus flower. Even though its roots are in muddy water, the lotus flower always rises above the mud to the water- perfectly clean and aromatic. I can't help but see a parallel between the lessons I've learned through these people, and the way I try to live my life while facing something so scary.
Maybe the mud is our diagnosis- maybe by adapting, or by finding ways to live in harmony our illness, we float to the top. While my foundations may feel like termites are munching away, I picture my perfect lotus, floating away from the mud in which in grew.