Five years ago, my life drastically changed. Five years ago, I almost died.
I didn’t die. I lived, but I was transformed.
I’ve talked about this before, how I was sick for a long time but didn’t realize it, not really. I had issues with my guts but I thought that everyone did. The times it got really bad, when I thought I was going to die and almost wished that I would to make the pain stop? I was so used to having those episodes minimized and dismissed that I’d started to do it, too. When my bowel perforated, I thought it was just another day of painful gut issues, and that I could ride it out like I did all those other times.
Like I should never have had to do all those other times.
Needless to say, I wasn’t able to just ride it out.
Five years out from that day, I’ve had three hospital stays, two surgeries and a correction/clean-up, months where I had to see my surgeon every day to deal with a slow-healing surgical site and infections…so many infections, actually. My healing takes forever. My skin, teeth, weight and stamina have all been affected. I’ve had to give up foods that I love and are considered healthy, because I can’t digest them. I’ve struggled with nutrition, exercise, and mental health.
Still, I’m alive. I’m so grateful to be alive.
Crohn’s is a complicated disease. There are hereditary, environmental, and mental aspects that can mesh together with whatever underlying reason that people get the disease. Some people have the potential to develop it and never do. Others are “lucky” like me and have things like trauma and stress that weaken resistance to it, and add to the overall symptoms. It’s unsure but we think there’s a hereditary aspect to my case as well, because people in my family didn’t talk about these things but there are signs.
…No one told me I’d have to be good at research when I got my diagnosis, but thank goodness it’s something I’m good at, because it’s given me clues towards the path I should follow. Doctors only do so much, and a lot of the time they’re just throwing things at the wall to see what sticks. I’ve had to investigate diet, what various symptoms mean and how to handle them at home, potential treatments, how to live with this disease in a way that allows me to mostly function…
I didn’t need more proof that I’m strong, but I have been given it in abundance. I learned how to clean my own wounds, and how to dress a large open wound with a wound vac, something that is right out of a body horror story, let me tell you. I got over my fear of giving myself shots, which is huge. I’ve handled scary operations and tests and more pain than many people will have in a lifetime. [not nearly as much as some people, of course!] I’ve gotten a crash course on advocating for myself, both with doctors and against insurance companies, who love to deny needed meds because Crohn’s treatments are expensive.
I value every moment that I’m here.
Even when I’m stuck in the bathroom and miserable, I’d rather be there than the alternative. The pain and frustration come and go, but the joy of getting another day is one that puts it all in perspective.
There’s a moment that stands out to me. I was in my room, about 5 days or so after my first surgery. I had graduated to sitting up in the reclining chair, so I could look out the window. It was a mostly nothing view, just the rooftop and surrounding buildings, but I could see trees in the distance, and there was the sky. I watched the colors change as the day progressed and when we hit the golden hour and everything was bathed in pink and yellow light, I cried at the beauty of it all, and that I was allowed to see another day like that one.
Now I try to mark every golden moment like that. That’s why I’m still here. I want all the golden hours I possibly can get.
