Still Learning My Limitations & Everyday Challenges

There’s so much that I want to write, but I’m afraid that certain topics might chase people away. Ultimately, I decided that sharing my thoughts is more important, and might help more people, then staying quiet and not offending anyone.

I am glad that the disease I have is unique. I am glad that the disease I have is not well understood or documented, so that there is a lot of opportunity for my curious mind to learn and dig. I am glad that my diagnosis is not something like” cancer” or “tumor” when people think they understand what you’re going through. The truth is, some days I don’t understand what I’m going through so I definitely don’t expect you to understand either.

I am a rule follower. Maybe that makes me boring, but it is also a reflection of my greater good mindset. But one thing I have never been good at, is being told that I can’t do something! It’s why I played boy soccer. It’s why I founded the Youth Peace Council at Manheim Central, and why I recolonized tri-Sigma at Gettysburg College. If it was easy, if we were just going along doing what everyone else does, where would be the challenge in that?

I am frustrated. I am frustrated that every day I discover something new that I can no longer do effortlessly. It’s frustrating that I spend so much time and mental labor trying to problem solve to do the simplest of tasks. I am astonished at how underrepresented the needs of people who require supplemental oxygen are in our society. That insurance does not cover oxygen options that allow people to leave their homes comfortably, is mind-boggling to me. Once you get a diagnosis of a condition that requires oxygen, are you also being relegated to your home for the rest of your life?

I, for one, plan on living as much life as I can while I am able to get out of my house. Don’t get me wrong, there are still days where just standing is exhausting. But looking forward to things has always been breathless anticipation for me. Researching travel destinations, the history of locales, and the cultures of new places is immensely fulfilling to me.

I know that technology can only provide so much oxygen in a portable manner, so there will come a time when I am no longer able to get out of my house for any length of time or with anything resembling dexterity. Until then, I intend to make the most of every day and every moment. I vow to cherish them all, and I vow to share them with you. My beautiful sunflowers.