A few years ago, my husband Mark & I went to lunch with friends of ours. The wife, like me, had a genetic disorder. We got into the conversation of why our husbands married us, when they could be with someone who had a more perfect, always-working body. I wondered how did/does Mark view Marfan that makes him want to stay, when it’s made other guys run away? So, I asked him. I thought his answer was worth sharing, so I asked him to write a post about it. This is his story.
I always dated tall girls.
I was the shortest student my age throughout all of elementary school, and the situation did not improve much in the following years, so pretty much everyone looked ‘tall’ to me. Nonetheless, I always dated the tall girls.
I guess that’s why, to me, pictures of Maya and me from some of our early dates, when she would show up in high heels and stand — literally — head and shoulders above me, really do not seem all that unusual.
I actually don’t remember when she first mentioned “Marfan syndrome” (or, as I incorrectly called it for at least a year, “Marfan’s”), as it was never a game changer for me, just another data point. I certainly did my research, starting from Wikipedia and then digging deeper wherever I could. I wanted to be able to join dialogues between her and her doctors on an educated level, to be able to logically take and argue her side when a doctor brushed off an event, and to understand the many choices she made about her health.
We hadn’t been dating too long (well… 2.5 years?) when our first emergency room trip together occurred. While dancing at our university’s winter formal in downtown Cleveland, Maya began to experience a rapid and arrhythmic heartbeat, which led to us spending the rest of the party at a nearby hospital. Though nothing came out of the late-night-into-the-morning stay, the five hours waiting, talking, and playing card games in a room at the ER turned out to be one of our most memorable and most enjoyable dates.
Since then, the hospital stays and doctors visits have come and gone. And we have had plenty of memorable dates outside of the hospital, as well. Our life is jobs and kids and families and chores, like the lives of so many others, just seasoned with a dash of medical activism and a sprinkling of Marfan friends (our “Marfamily”).
We recently saw our oldest son start preschool, and our younger son – who also has Marfan syndrome – is following closely in his older brother’s footsteps. Children with special needs can pose an enormous set of challenges for a family, but seeing Marfan play out in both mother and son has strengthened our family bonds as they share doctors, hyper-mobile dances, and the difficulty of finding clothes that fit.
We have had our share of scares, from medical speculation (“I think Maya may not have Marfan syndrome, but rather …. “), to truly serious issues (we keep an emergency room bag packed), to outright misdiagnoses (“I think it’s a dissection! … Oops! No it isn’t. Again.”). But we address these events as they come, rather than living in fear of them. Before we were married, we were handed some particularly frightening – though ultimately incorrect – medical news. Our resolution at that early stage to stand side by side and handle such situations day by day set a firm foundation that has not weakened over the years.
Marfan syndrome does make every day harder than it may have been, but it is a part of who Maya is, through and through. And now, it is a part of me, too.
And I wouldn’t trade it for the world.