It’s summer, and it’s usually where I’m doing relatively well, as well as I could be doing for my condition anyway (COPD). I have a part-time job that is manageable, and it’s as normal to normal as it can be – I have a set schedule of waking up around 8:20am everyday and coming home by 4pm to rest, eat dinner, prep, rest, repeat. Even the pill popping at night has become a pretty standard routine that doesn’t bother me much. I stay busy physically and mentally, but then comes the visits to Upenn every month or so for fv1 testing, and sometimes it’s okay, some other days it’s less okay. The past week, I’d been trying to obtain a note from my lung transplant team verifying the medical needs of staying with the same psychotherapist who treats me with anxiety and follows me on my chronic illness journey; we hope to get a single case agreement with the new insurance company.
Sometimes I get a bit of a panic wondering what it would be like with me surviving an illness that limits me in so many ways, financially, physically, etc. The only thing I can control is my emotions and mentality, so that’s what I’ve been trained to focus on. What if my parents weren’t there for me to depend on? Nobody else would care. My nurse practitioner wrote me a medical note that I could give to the insurance company, and in it it describes me as a very young patient with severe lung disease and one with a “terminal illness.” It was so weird to read that part. She had warned me she would use some scary words to make her point across. But what freaked me out later was the realization that she wouldn’t use it to straight up lie– it was at least true and relevant to me even if I felt like I was managing my day-to-days okay. I am someone they all are monitoring to see when, not if, my progression starts to decline. But again, I can’t focus on these thoughts because they don’t contribute positively in any shape or form.
For me to be questioned at work when I park in the handicap spot by a co-worker, these things feel so ridiculously unfair. Yes, I don’t look sick enough. But yes, in fact, I do not have a mild disease, but a severe one. I am just young and able to fool people in the short term run.
To end on a good note though, this woman I’d been following who is just a bit older than me with cystic fibrosis (fighting2breathe) was severely ill, on the hospital bed for months in California. And she received her second lung transplant and looks like she is on the way to recovering. I am so happy and relieved, and hope that for all her suffering and strength, she is able to have the life she wants, with her husband and future kids like she hopes to have. That’s her biggest wish, and yet most people around me take those for granted.
I don’t pray to be successful or have anything given to me: I want the opportunities to be able to become successful on my terms, and the drive and determination to get there regardless.