True Love: My Marfan Tale


It is universally agreed that everyone must have at least four dates by the age of 16. It is also universally agreed that I was too tall to have dates. At 16, Marfan syndrome made me a foot taller than all the other girls. I was underweight, flat-chested, and had a personality so strong it attracted all the cool guys to be my best friends. I was definitely cool and definitely dateless.

Other than dates, my height attracted everything else. People gawked. Strangers asked how tall I was. Older folks insisted I must consider volleyball or modeling. Young men with nothing better to do yelled at me on streets. Children followed me chanting: “As tall as a shit poking stick.” It was strange how several extra inches of height could grab so much attention. I learned two things very early: 1) I was different, and 2) People had low tolerance for differences.

My Marfan height guarded me for another couple of years, and then my romantic life finally started. The dating business was extra hard with Marfan. My first boyfriend thought I had a terrible infection that ate all the way into my genes and shrugged with disbelief. We broke up. My second boyfriend was nice and we got so far as meeting his parents. They weren’t very interested in the idea of having a sick person joining the family and passing the sick gene to their grandchildren. We broke up. The third guy believed with unlimited confidence that he must be the most miserable person in the world and no one was allowed to compete with him on that, not even someone with a life-threatening condition. We broke up. The fourth guy learned what I went through, then said he could not handle it. We did not have a second date.

My true love showed up one day in the shape of a quiet, green-eyed American. After three weeks of dating, I broke the news to him that I have Marfan. He Googled it and carried on dating me. A year later, he proposed. A month before our first anniversary, the lens in my right eye decided to move further north. The eye went almost blind. I went to my regular eye clinic only to learn my ophthalmologist had vanished. No one knew where he was or what to do with my eye. Well, time to look for a new doctor! Google led us to a Marfan specialist in a town two hours away, who then became my surgeon. He cut my eye open, vacuumed out the old lens and some of the vitreous gel, and stitched a new lens in place. A week after the surgery, with a swollen, deep red eye that hurt and only wanted to close shut, I put on a nice dress and went to sit at a candle-lit dinner on our kitchen table. It was our first anniversary.

Until that point, I only had a fuzzy idea Marfan would be an uninvited guest in our life. Its presence was now HD uncut. Surprise surgery. Unexpected search for new doctor. Countless trips to and from the out-of-town eye clinic, which means we both have to juggle with our schedules and find a time to get off work. Sudden pain at 3 a.m. Panicked calls, panicked trips to the hospital. When we got out, I clutched my husband’s arm and walked down the dark and quiet hallway of the emergency clinic. It was barely 6 a.m. Why did he have to go through all this?

Love is a choice. Magical though it is, we make the decision to nourish our love or let it die. We resent when someone chooses to leave us and question when someone chooses to love us, but hey, it has little to do with us. To leave or to stay is their choice.

But we humans like to stomp on others’ choices. Take babies as an example. It is mandatory that a new bride must be asked, immediately and repeatedly, when she will have babies. Family and friends shower her with baby wishes when she is still in her wedding gown. Three hours later, babies become the official conversation starter. Another few days and babies invade all phone calls and messages. There is a code system for baby-specific talks. “Anything new?” means “Are you pregnant yet?”; “What’s your plan?” equals “It has been too long and you really should have a baby already.” If people could conjure babies out of thin air and stuff them in her uterus, they might very well do so. What about her choice as to when she is ready or how she feels about having babies? Bah, choice shmoice.

It’s strange how quickly we humans change our minds, too. As soon as the woman announces she has a life-threatening genetic condition, that she might have a massive aorta rupture during pregnancy or labor and die from it, and that her children – every and all of them, the very babies everyone has been nagging her to bear – would also have a 50-percent risk of carrying this condition, the questions invert. “Why are you having a baby?” “Why put yourself through that kind of risk?” “Why are you risking the health of your baby?” “Do you really want your baby to go through all the terrible things you have gone through?”

I won’t answer these questions, because 1) A woman with Marfan and children has nicely answered them in her blog, and 2) I’m a jerk. Thank you so much for asking me these questions regarding my own reproduction which has absolutely nothing to do with you! I would never have thought of them myself! Of course I didn’t know I might die or my baby might have Marfan! And I certainly did not think about my baby’s future with Marfan either! Thanks so much for telling me!

If you truly love someone, let them choose. Remember the time when it was just the two of you and no disorder hovering around barging in? Yeah, it turns out they are still that same person you liked for their quirkiness and their impromptu “Let’s go dancing right now!” They are still right there — you just have to look past the genetic condition that seems to put its labels all over their life. They don’t have a choice on what genes they were born with, but with everything else, they do. Didn’t they choose to live their life this way and it happened to run into yours? Que sera, sera. Life is full of uncertainty, the only thing we have a good grip on is our choices. Love is a choice. Will you choose to love?

This post originally appeared on Medium.

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