I was recently reading a book called How to Live a Good Life by Jonathan Fields (which I highly recommend). In one of the chapters, he asks the question:
About six months ago, I made the decision to “retire” from my career as a full time nanny at the ripe old age of 27. I didn’t make that decision because it was time to move on, or because I was just so over being a nanny - quite the opposite in fact. I retired because my body could no longer keep up with the kids I cared for. I retired because Marfan syndrome wasn’t going to let me do the work I loved any longer.
As an individual with Marfan syndrome, you've most likely had that awkward encounter with a coworker, classmate, friend, or even family member where you have to explain your condition. Sometimes, even after you've disclosed the information, they just seem to forget that you've actually got a condition that can affect nearly every aspect of your life.
From a very young age, I understood that I was not like other kids. I knew that I had eyes that didn’t see very well, and lungs that didn’t breathe very well. I knew I was tall and skinny, and that I was not able to participate in physical education like the rest of the kids. I knew there was something wrong with my heart, and that’s why I couldn’t play too hard or be on the volleyball team. I knew I had Marfan syndrome, and I knew that it made me different. Despite all that, I managed to live a normal life.