Have you ever watched that episode of The Simpson's called Bart of Darkness? You know, the one where Bart breaks his leg and becomes all "isolated and weird?" In a strange way, that kind of describes my life after diagnosis. While I don't spy on my neighbors like Bart does in the episode, I have become isolated and weird because I can't partake in many of the milestones my friends are currently enjoying. Maybe I will get there someday, maybe I won't. Sometimes it is easier to keep to myself than to try and throw myself into a world it sometimes feel like I don't belong in anymore. In the episode Bart of Darkness, Bart breaks his leg during the summer after Homer builds a pool. All of his friends want to swim (which he obviously cannot do,) so he stuck in his room all day by himself. In a strange cathartic way, I find myself relating my life to a small theme in this episode.
One of the first things I found out was that this disease (that I had never, ever heard of before,) is both incurable and fatal. The second blow I learned was if you are female with PH you cannot get pregnant because of the high mortality rate associated with PH (for both the mother and child.)
For these reasons and more, I sometimes find it extremely challenging to relate with my peers. I am now in my later 20's. I am at an age where it seems like nearly everyone on my Facebook is starting a new chapter in their life. While I am very happy that my friends get to experience these exciting things, it is one of the most difficult pills to swallow. Even harder than the 40 mg of boner pills I swallow each morning to slow down the process of my body betraying me. Unless you are in a similar situation, you can only imagine how hard it is to hear about engagements, weddings, pregnancy, babies, moving into a new place, starting a new job, going on vacation, being able to go on a hike through the woods or the thing I miss most of all- going to a concert.
Even though it sometimes feels like my life stopped when I was diagnosed, I realize the world must keep spinning. However, it can be hard to think about or hear about all the things I miss doing, or hearing about the things I used to plan on doing. I haven't been able to face any my friends or family who recently had a baby because I have no idea how I would react. Sometimes I see a baby or toddler at the mall or at a restaurant and I tear up, or feel this pit in my stomach. I wouldn't want to cry while meeting their baby- that wouldn't be fun for anyone.
I resigned from my job in June, which was a very difficult decision to make. It was my first good job. Just before diagnosis it felt like I was finally growing up. I could see myself doing more within the company. I was saving to move out. I was talking about getting married. I hope to one day do these things, or some of these things, but I don't know what will happen. I hate the idea that at 27 I could possibility be retired, may never get that dream job, move out, get married, have kids, or being healthy enough to walk up a hill ever again.
Sometimes my friends complain that they feel they are too old to accomplish certain things- like relationships or jobs. If you think you would be too young to die, please know that you are not too old to accomplish your goals or find love. If you are not married at 30 it doesn't mean it won't happen- it just hasn't happened yet. The same advice goes for myself. Maybe one day I can have some expected milestones that have now become a sought after luxury.
One of the biggest blows I learned about a PH diagnosis is that some of us with PH are disabled, or will become disabled. Unfortunately, I am disabled and it happened rather quickly. This disability also challenges what society believes they know about physical limitations. The visual cue in society for to recognize disabilities is a wheel chair. The special parking pass that I have allows me to use a spot designated for people with special needs. This VIP parking pass (or as my dad calls it, my princess parking) has a picture of a stick figure in a wheel chair, which doesn't represent my disability. On more than one occasion people have "judged me with their eyes" (especially since I stopped using oxygen...against my doctor's orders.) The difference between me and that stick figure in a wheelchair is that my heart and lungs are failing. This image should be thought of as an umbrella term, not a definition for people with physical limitations and special needs. My parents like to say they don't see me as being disabled. The problem is virtually no one else does either. While having a positive spirit is important while facing any illness- it doesn't make it any easier to go up a flight a stairs. I may still have my legs, but my body would be useless without a working heart and lungs.
For all of these reasons, I have become weird and isolated. Sometimes I have to pretend that my life before all of this never happened. It hurts too much to think about how it felt like I had the whole world in front of me. Now I am not really sure where my future lies. I know no one really knows what the future holds, but it is different once you have had a handful of doctors play psychic with you. Each one trying to guess how many years you have left, when you will get worse, and so on and so forth.
This summer I have tried harder to get out there, and try to get whatever parts of my life back that I can. Last summer I stayed in everyday, avoiding my friends and family because I wasn't sure what I could even talk about. This year I have found lots to do. I went swimming (okay, I stood in a pool) which is something I never would have dreamed of doing last summer. While I can't really go to parties anymore, my boyfriend's close friends have regular game nights. I might not be able to stay very late, or eat their yummy snacks, but board games are something I can still do! It is a great distraction and it gives everyone something to talk about. I have met close friends and family for coffee and have learned that it is okay to talk about my PH and even complain about it to them, the same way they discuss challenging things in their life. I have even stayed over night in a hotel with my boyfriend for a mini vacation. Before we used to travel a little further, and stay a little longer, but again, I did something I didn't think I could do last year. In some ways I held myself back hoping that I would do all of these things "once I get better." This might be as good as I get (technically with this disease you're not supposed to get "better," but the premise of this blog is to challenge that idea.) I decided I cannot wait for something that may never happen to start trying to live my life again.
Sometimes life takes you places you didn't plan on going, but it is up to you to keep doing what you can in those situations. When life gives you lemons, use the lemon juice in a warm detox water in the morning or whatever.