A Different Normal

By Maya Brown-Zimmerman

Let me start off by saying, overall, I don’t mind having Marfan syndrome. I’ve had some great experiences as a result of being born with it and have met some of the most amazing people in the world who have become my second family. Marfan has made me who I am today and I really like who I am. If I had the chance to get rid of it, I would pass.

That said, some days, having a chronic illness really stinks. I think it’s totally acceptable to have a day of grief over that now and again. Today I’m indulging in a little (rarely played) game of “what if I didn’t have Marfan?”

If I didn’t have Marfan syndrome, I’d be a runner. I wouldn’t have my long legs, but my brother runs and he’s not all that tall, so I think it’d be doable. I’ve always admired runners, plus you don’t need to lift weights or do a million crunches to run. I wouldn’t run in the cold though. I’d either have a treadmill or use one at a gym. Some people might think running in place is boring, but I like both TV and music, so I think either of those would occupy me well enough while I worked out.

If I didn’t have Marfan syndrome, I’d have more children and I’d try to have water births, or at least go drug-free in the hospital.

If I didn’t have Marfan syndrome, then Baby J wouldn’t have Marfan either. That means I wouldn’t have an oxygen tank, cpap machine, or pulse oximeter in my bedroom. I wouldn’t have had to check J’s oxygen levels last week when he started screaming out of nowhere to make sure his lung hadn’t collapsed (which can happen spontaneously with Marfan). We’d also have a lot more time during the week to play because we wouldn’t have his therapy or specialist appointments.

If I didn’t have Marfan syndrome, I’d be a music therapist. It wouldn’t have mattered that music therapists are self-employed and therefore have to get private insurance because I wouldn’t have a pre-existing condition that makes getting private insurance impossible. So, I wouldn’t have had to make the decision to switch majors in college to something more Marfan friendly. It’s not that I didn’t enjoy my major and subsequent career path, mind you, but if Marfan hadn’t existed I probably wouldn’t have left music.

If you didn’t have Marfan (or insert whatever it is you might have), what might be different for you?

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and the Sensory Processing Disorders Blogger Network.