Musings of a Marfan Mom

Marfan Through a Husband's Eyes

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Today is the last installment of a three-part series: Marfan Through the Eyes of the “Unaffected.” You’ve read my story, but what about how Marfan has affected those around me?

Over New Years Mark, the baby, and I met one of my college girlfriends and her fiancée for lunch. This friend has chronic pain, worse than mine, and at one point during the meal gestured to her fiancée and remarked “Yah, I don’t even know why he’s marrying me!” Her fiancée pointed at Mark and said, “Well, he married her!”

And that got me thinking…why did Mark marry me? [I mean, besides love and all that jazz.] How did he/does he view Marfan that makes him want to stay, when it’s made other guys run away? And from there, I wondered about the effects on my other family members growing up. Aside from the medical bills (OH, those bills!), we never really discussed the impact my illness had on them.

You’ve heard from my mother and my brother. So, today I bring you my fantastic husband, Mark.

Mark and I met over 6 years ago, in college marching band, and were dating within 3 months. He was the very cutest trumpet player and leader of the band cheers. These days he’s an analog integrated circuit design engineer. In his spare time he enjoys building blocks with Menininho, experimenting in the kitchen, and playing Starcraft and TES4 Oblivion.
I always dated tall girls.

I mean, I was the shortest student my age all throughout elementary school, and the situation did not improve much in the following years. Pretty much everyone looked ‘tall’ to me. Nonetheless, I always dated tall girls.

Therefore, pictures of Maya and I 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.

Homecoming 2005

I 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. then going into greater detail, and reading up on resources from Johns Hopkins, The Mayo Clinic, and papers and publications by Hal Dietz. 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 was recorded by her Holter Monitor. Maya was engaged in an extended effort to convince her doctors that these arrhythmic episodes were something worth looking at, rather than just an example of running-up-the-stairs-too-fast; so even as I helped Maya recover, we hurried to a phone to send the results to the hospital computer. The on-call, however, gave us a surprise, saying that there was “something unusual” and told us to report right away to the Cleveland Clinic Emergency Room. Though nothing came out of the late-night-became-morning visit and we never quite learned what “something unusual” meant, the following 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.
“Conference” was a term I had heard used with reverence by Maya ever since I first learned of Marfan syndrome. Supposedly, it was a veritable Mecca in more ways than one for the Marfs… “Someday, you’ll get to see it, Mark”. Years later, I was taken along to meet the Marfamily at the annual National Marfan Foundation Conference which was held, that year, in Boston. Unbeknownst to me, the great Marfamiliy honors marital affinity–I was now married into this family as much as any “in-law”. I was certainly an outsider to this network of camaraderie stronger than that forged between my lab-mates in the trenches of 6 AM graduate school meetings, but invited nonetheless. They danced, discussed, met, and mingled, and I saw Maya naturally slide into her role as leader, older sister, and sometimes even mother of the hundred-odd middle- to high-school aged kids gathered in the teen program.

But Marfan syndrome exists outside of the momentous occasions, as well.

Marfan syndrome’s activity restrictions have, over time, extended to the both of us in one way or another. We obviously do not hike winding trails and climb gorges like I did when I was younger, nor will long walks on the beach ever be a part of our repertoire. The opposite is true in other ways: As Maya has a limited ability to stand for long periods of time, I am on my feet from the moment I get home from work until well after the baby is asleep in bed.

Most unusual–to me, at least–is that Marfan syndrome seems to produce anger. I attended a support group for “unaffected spouses”, as they called us, at the Boston NMF Conference. The opinion there was fairly universal that the pain, limitations, and uncertainty of Marfan syndrome engendered a vague, undirected anger that seemed to creep into relationships. But, as has been mentioned by Maya’s mother and brother both, Maya began long ago and continues to take this anger and drive it, bit by bit, into her unending activism and defense of those persons and causes she takes under her wing.

We have had our share of scares from doctors, both from medical speculation (“I think she might not have Marfan Syndrome, but rather …. “), or right out misdiagnoses (“I think it’s a dissection! … oop. No it isn’t. Again.”), but they are events that we address as they come and pass as they go, rather than living in fear of them. When Maya’s geneticist speculated that she may have the life-threatening Vascular type of Ehlers-Danlos syndrome, I saw no reason why that should change the nature of our relationship. Maya and I approached the information with a similar stoicism, yet we still met the negative test results with a doubled sigh of relief.

It is because day to day life does not get to be put aside that we are able to continue; to get engaged in Washington DC, get married in Columbus, have a son, and begin to raise him in California.

Marfan syndrome makes every day harder than it could 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.

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15 Comments

  1. That was so well written! And you two look wonderful together at your wedding!

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  2. Is everyone in your family a talented writer?! Sure seems that way. This is beautiful.

    Here’s a question (maybe for a future post?) raised by your husband’s writing about the physical activities you are not able to do: How do you address physical fitness with limited stamina and ability to hike/walk long distances, etc.? As you know, I have a connective tissue disorder similar in some ways to Marfan and many of the same limitations, and this is something I struggle with. I know exercise is important for long-term health, but in the short term, I am limited in what I can do and also don’t want to use limited energy and stamina on exercise when I need it for taking care of kids and the house. Wondering how you deal with that.

    Sounds like you and your husband are both very lucky people.

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    marfmom Reply:

    Thank you! I am actually going to be talking about exercise next Monday :-)

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  3. Wow, I am so thrilled to have found your blog through a comment you left on my daughter’s…as she awaits a diagnosis for her baby. I am so glad you did this series, it has been encouraging to hear from your family members and your brother’s made me laugh out loud.

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  4. Beautiful :)

    Maya, what would you say it was about how you where raised that helped you to be so posative and keep moving forward in the face of so many difficulties intead of the alternative?
    I hope my son grows up to be alot like you Maya, you are amazing!

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    marfmom Reply:

    Aww thank you Larie :-) I think my parents’ attitude was a big factor, but Sandy was probably the biggest. She, and the other teens and Marfs I met later on, were great examples to me. I think being involved in the Marfan community is so helpful in keeping a positive attitude b/c of how we lift each other up.

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  5. Nice job, Mark. I’m sure Maya will treasure the loving sentiment throughout the essay.

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  6. Another great post! This one gave me tears in my eyes! I don’t have to tell you, Maya, that you are married to a wonderful man. I pray that Aaron (and Josh!) will meet a wonderful girl one day that really understands the meaning of “in sickness and in health” and knows how to take the bad with the good. In explaining Marfan to Aaron’s teachers, our neighbors, family, etc., I am always careful to point out that it is just a part of him — not all of him.

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  7. Maya,
    I really enjoyed this series. What a great insight to what life with a family member living with Marfan is like. Each and every post was touching, especially your husband’s. Is obvious that your mother, brother and husband love you so very much. Your positive outlook, dedication to others living with Marfan and hunger to learn more about the disease, is so inspiring. :)

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  8. Wow! Sounds like you two have an amazing relationship. :)

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  9. Thank you so much for sharing. I enjoyed reading it! You too are so cute together.

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  10. Maya
    My name is Estelle and I live in South Africa. I all so have marfan. I have a 12 year old boy who have all the signs of Marfan. I know exactly what you and your family is going through. I had both my lenses transplanted because of lens dislocation. I have a mechanical valve in my heart and a part of my aorta has been transplanted. I am on a lot of medication but I’m alive. March 2009 I had my first heart attack. Funny I was all so on the dance floor…. What is this about us and dance floors. I did not allow Marfan to rule my world. 25 ginies later I found one that was willing to take the risk with me to have my child. I only have the one child and he is my everything.
    Maya my advice to you. There is a lot that they can do these days for us. Don’t except only one opinion from doctors and live your life to the fullest.

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  11. Wow, great posts lately, Maya! This one was especially interesting to me because I knew you guys for quite a while before I had a clue that you had Marfan Syndrome.

    You just seem like such a natural fit for each other, with each of you so comfortable in your own skin. I don’t even think I noticed much of a height difference until I took a photo for the ward directory. :)

    This post was really well-written, so props to your hubby. The money quote for me was:
    “It was never a game changer for me, just another data point” .

    It’s a wonderful thing to be completely accepted and loved by someone.

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  12. I truly hope my daughter will someday find a soul mate that loves her just as much as your hubby loves you. :0)

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  13. What a wonderful blog entry. As a long-time Marf patient, I never really thought about what it was like for partners, unaffected parents and siblings. It was wonderful to hear from your loved ones about how they cope.

    You have a truly lovely blog. One that is inspirational to us often issolated Marfs. Keep letting us know how you’re doing.

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