Monday, July 11, 2016

How Life With Marfan Syndrome Has Shaped Me As a Person


My biological mother had it, and passed it on to me. I passed it on to at least one of my sons. We have Marfan Syndrome, a connective tissue disorder that can affect every major system in the body. I personally am legally blind (below the limit to drive), injure myself often, and have a lot of joint pain. As far as Marfan's goes, this is mild.

As a kid, I was bitter about it. Why me, you know? I couldn't take gym like all of the other kids. I couldn't play sports. I had to have these embarrassingly large textbooks that I got made fun of for. I hated it, and I was angry that there isn't a cure. I'll always be this way, and coming to terms with that at a young age was painful. No one wants to be limited.

I can't put my finger on the exact moment the transformation began. Marfan's slowly morphed from my enemy to a part of my identity. I stopped trying to hide my limitations and started educating people about it. Marfan Syndrome has affected every aspect of my life. Rather than hating it, I've come to accept it as a part of who I am.

I learned compassion through being treated differently.

I learned to give people the benefit of the doubt by being accused of faking my difficulties and my pain.

I learned strength through coping with my pain.

I learned about consequences and self-control from injuring myself when I pushed too hard.

I learned independence through people believing I was less capable or worthy because of my limitations.

I learned to be creative in overcoming my limitations.

I wouldn't be the person that I am today if it weren't for this disease. I never thought it would be possible, but I'm grateful for this thing that has taken so much away from me because it has given me more than I ever imagined.