Know the Signs, Fight for Victory

When it Feels Like Marfan is Winning

About six months ago, I made the decision to “retire” from my career as a full time nanny at the ripe old age of 27. I didn’t make that decision because it was time to move on, or because I was just so over being a nanny – quite the opposite in fact. I retired because my body could no longer keep up with the kids I cared for. I retired because Marfan syndrome wasn’t going to let me do the work I loved any longer.

Admitting Defeat

The day I had to tell my “nanny family” that I had to leave was quite honestly one of the worst days of my life. Not only was I letting them down, not only was I leaving kiddos that I really cared for, but I also felt like I had let Marfan win. Being a nanny was part of my identity, and I was proud to call myself a career nanny whenever someone asked. I knew how to sleep train an infant, how to perform CPR, how to teach a kid to read, and I could run a household like a boss. I also loved “my” kiddos more than anything.

But what I couldn’t do anymore was run up and down stairs, lift toddlers, walk around the zoo, push a stroller. I was pushing myself physically every day, and I had the aches and pains to prove it. More and more, the kids would ask me to play with them and I would have to explain that I couldn’t. That didn’t feel good; it felt like defeat.

Changing Perspective

When it became pretty obvious that I wasn’t doing my job as well as I used to, and when the kids stopped asking me to run with them because they knew I would say no, I decided it was time. Time to move on, time to change, and time to deal.

I spent a good few weeks being pretty ticked off at my body, and feeling sorry for myself. “This sucks,” “This isn’t fair,” “Why can’t I just be normal?” As a Mighty Marf yourself, you’ve probably had the same sentiments. But this was the first time in my life I felt truly held back by my condition. Sure, there are inconveniences like not being able to hike a trail or help my husband lift furniture, and the general fun that comes with going to the cardiologist. But this was my identity, and Marfan was changing it. So I had a choice: Let Marfan win (as I saw it), or change the game.

For me, the process of deciding that I was going to win started with simply letting myself wallow for a minute. Yes, this totally sucks. Yes, this is totally unfair. I might have even shed a little tear and been ticked off for a bit. But then I dusted myself off and I decided to move forward. For you, this “moment” of wallowing could be a few hours or even a few days. As long as you decide to take back the reins and control your outlook on the game, you can win, too.

New Rules

Another part of changing the script (for me, at least) came from deciding to put my energy into something positive, something that I can do, and that Marfan can’t touch. Having Marfan is all about working around limitations. Instead of nannying, what could I do? What could I contribute? I was lucky enough to find writing, but maybe for you it’s making music, building something, reading, learning something new, cooking… There is always something out there that we can do, and there are ways to fight that voice in your head that says, “You can’t do anything. Marfan wins again.”

I also found that changing how I saw this event drastically affected how I talked to myself. Instead of thinking, “I can’t nanny anymore, this sucks,” I thought instead, “It’s time for a new adventure, and I’m going to find it.” While anyone who knows me will tell you that I’m the last person to come to for cheesy positivity mantras, this actually worked. I changed the story I was telling myself, and it changed my outlook.

If you’re stuck in this rut right now, and you can’t think of what your own next adventure is going to be, that’s OK. Sometimes, it’s enough to just brush the dirt off your pants and stand back up. Sometimes, you just get lucky. Sometimes, you have to search for that next great thing. But it always comes along, that I promise you. Keep an eye out for things you want to try that you know won’t affect your condition. Listen to your thoughts, and pay attention to what you’re attracted to. The “You can’t’s” and “You shouldn’t’s” will naturally pile up, but continue to look.

Don’t be afraid to explore. You might have Marfan syndrome, but you might also be the future Top Chef or the world’s fastest reader. Maybe you’ll go back to school and become a historian or maybe you’ll start painting – who knows. But there are battles that Marfan doesn’t have to win, and the biggest battle is your attitude and your approach to life. We may have been dealt a junk hand, we may be struggling with certain aspects of our lives, but we’re never losing. We’re alive, we’re here, and there’s always, always, always something you can do.

Win the War

Maybe you’ve had a similar “retirement” event in your life, or maybe you’ve had to undergo surgery lately. Maybe you’re dealing with limitations in school or your personal life that frustrate you beyond all comprehension. Maybe you’re just plain ticked off that you have this condition. I get it. We all get it. But the beauty of having a condition like this is that you can choose how you see things (retinal detachment and cataracts aside). Marfan doesn’t get to win if you decide it doesn’t.

I know this “major life change” has altered who I am as a person, and it’s made me grow. We are all tested every day by this condition, but it’s how we choose to respond to those challenges that matters. Instead of saying, “Marfan wins again,” maybe try saying, “I’m going to let you have this one, Marfan, because I’ve got better things coming my way.”

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Latasha Doyle lives outside of Denver with her husband and senior pets. She owns her own copywriting agency, where she gets to work from home and doesn’t have to see anyone. When she’s not writing or playing with her pets, she enjoys reading, visiting her friends’ babies, and talking about ableism on the internet. She also just happens to have Marfan syndrome.

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