Know the Signs, Fight for Victory

Why I’m Grateful for Marfan Syndrome

I was recently reading a book called How to Live a Good Life by Jonathan Fields (which I highly recommend). In one of the chapters, he asks the question:

“What’s the one thing you’re most grateful for?”

Because I’m grateful for a lot of things in my life (my husband, my family, my pets, my career, etc.), I took a minute to pinpoint the one thing that I was most grateful for. Husband? No (sorry, babe). Career? No. Pets? No. That little voice in the back of my head had immediately perked up when I read the question, shouting one little phrase over and over. My brain came up with one resounding answer: Marfan syndrome.

Trust me, I was just as blown away as you probably are. Who in the world would be genuinely grateful for a condition that, to be blunt, sucks a lot? But there’s one thing that Marfan syndrome has done that I will be eternally grateful for; it has made me who I am.

While Marfan syndrome doesn’t define me as a person (I don’t say “I am Marfan syndrome!” after all), it has been a major component in finding out who I really am. Maybe you feel the same way. Maybe you think I’m crazy. Maybe you don’t see Marfan syndrome as a total burden, but you have yet to approach it from a standpoint of gratitude.

Whatever your reaction is, let me explain myself.

Marfan syndrome has given me:

1. Perspective

Because Marfan syndrome is never a field of roses, I’ve learned a lot about what’s really important. Life can be really, really tough. Anyone who has Marfan syndrome knows that there are days where it’s really hard to simply keep your chin up.

But, as counterintuitive as it may sound, Marfan has also given me the perspective to know what’s worth my time, my energy, and my love. While I still struggle with daily roadblocks, I know that “the big picture” is more important. Thanks to Marfan, I truly know that life is just too short.

Does that work issue really matter in the grand scheme of things? Is that fight with a friend really worth the increased blood pressure? The things that are really important become much easier to see in the light of Marfan syndrome, and for that I am thankful.

2. Respect

If you’ve ever lost someone to Marfan, or you’ve had your own health struggles, you naturally begin to respect the time you have, and you enjoy those “good days” a little more than other people. I wake up some days and I am beyond happy that my back doesn’t hurt, that I can breathe a little deeper than usual, or that my heart seems to be beating at a normal pace.

I look forward to the “good days” and I intuitively know when I’m in the presence of one. When I get one, I live it up. I hope you do, too.

3. Strength

All of us have been through things that most other people can’t relate to. Whether it’s waking up with severe spinal pain, struggling with your eyesight, or even going through open heart surgery – many of us have been through the wringer. Some of us struggle daily with the complications of Marfan, some of us have lost loved ones to this condition.

And what do we do? We keep on keepin’ on. We face down all those struggles and all that fear and we try to make the best of what we’ve been given. Marfan syndrome, whether we like it or not, has given us the key to our own strength; we’re all stronger than we ever knew we could be.

4. Growth

I know that I am not the same person I would be if I was 100% healthy. While I sometimes wish I could meet that “healthy me,” I also know I’m a better person for my struggles. And so are you.

Because of Marfan, we are more compassionate to the plight of others. We know that what you see isn’t always what you get. We know that not every tall person wants to (or can) play basketball. We all know how hard it is to find people who just “get it.” And we know what it’s like to forfeit something you want in the name of what you need.

All of those experiences help us grow, help us become the best version of ourselves. Sure, I wish there was an easier way to become me, but hey. Them’s the breaks.

5. Community

The thing that I feel I owe most to Marfan syndrome is the people. Marfan syndrome comes with thousands of other people who know what I’m going through, who have been through it, or who are just discovering it all. I’ve connected with people who are amazing and strong, and I’m constantly blown away by how much support there is.

I am also grateful for the people who are present in my daily life, who understand what I’m going through, and who never utter the words: “Cardio is good for you.” Thanks to Marfan, I’ve been able to find my “tribe,” the people who will support me through my struggles and make me forget about them when we are together.

Marfan Still Sucks, Though

All of this is not to say that Marfan syndrome is a walk in the park, nor am I trying to belittle the pain and difficulties many of us experience. What I am trying to say is that Marfan syndrome is a major part of our lives, whether we like it or not (most days not).

We can choose to look at Marfan syndrome as a burden, one that makes our life a struggle – or we can look at it as a blessing in disguise. We can see all the amazing things we have that other people don’t: strength, humor, community, perspective. Height (ha!).

Gratitude for my condition doesn’t mean there aren’t days where I say, “Well this really sucks.” I do. Quite frequently, in fact. That’s why my response blew me away, but the more I thought about it, the more it made sense.

I’m grateful for Marfan syndrome because it is a cornerstone of who I am, and I’m happy with the person I’ve become. Are you?

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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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