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I Can't Just 'Choose Joy' in Life With EDS. But Here's What I Can Choose.

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I’m not the same person I was when I started this.

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My outlook on life has been flipped on its head.

Step by step, I’ve been seeing more of, well… myself again. That old me — the quirky, inquisitive student I used to know who had a deep longing to constantly be learning, constantly growing. That girl who loved being thrown out of her comfort zone, learning new cultures and languages, and chasing after the next challenge. The girl who enjoyed life, even when life sucked.

I thought that girl had died.

But like a ghost, she keeps haunting me.

I’ve been catching glimpses of  the old me. It might not seem like something worth mentioning for most, but two nights ago I stayed up late reading a novel. It meant the world to me. My eyes watered when I realized that late night reading wasn’t something I’d done in at least six months — more likely, in a year. Between mind-numbing brain frog, the business of life, depression, and chronic pain, very little energy remains for me to do something just for the fun of it.

That old part of me isn’t dead. It’s just buried.


It still finds ways to express my old passions, my old dreams, and desires, but I doubt I’ll ever be the same.


That old me wasn’t as picturesque as a cursory glance at my memories would lead me to believe. I romanticize too much. There was so much broken in me. So much immaturity and anger and grief. At the same time, as contradictory as it sounds, I was also more innocent then.

The last couple of years, I’ve grown up tremendously, but I’ve also been very bitter. So much has happened that is out of my control. If I’m going to be real here, it’s been easier to be angry at my reality than it is to understand and accept it. It stings a little to write that, but it’s true.

It’s easier to be furious about the injustice of it all than it is to rest in the moment and just be. It’s easier to hate myself and others than it is to recognize the flaws and  wrongdoing and yet still decide to keep living. It’s easier to sink down with the weight of the world and never get back up than it is to acknowledge the very real pain and slowly begin the path to healing.

There are down times. I’ll be the first to admit it. There are times where I get it — you really, actually cannot get up no matter how hard you try. Life has got you pinned. There’s nothing you can do. I get that. I really do.

So what are you going to do? If you’re crushed, if you’re beaten down, if you’re broken… what are you going to choose? What can you choose?

I’ve always seen those cliche posters who read in bubbly letters, “Choose joy!” or “Be happy!” or “Smile!” The sight of them used to make me want to flip a table or throw a book.

Are you kidding me? I’d think (and sometimes rant to my long-suffering mother), Don’t they know that there are some things in life you can’t control? I didn’t choose this. I can’t change this. They act like I can wave a magic wand and poof all my problems will go away if I just think positively do some yoga, and plaster a smile on my tired face.

For a couple years now, if someone even made the suggestion that I was somehow able to “choose joy,” I got very defensive. I shut down. Because many times doctors have used phrases like those to say, “You’re fine. Stop overreacting. Go drink some water. Smile more. Socialize. You’ll be cured.” Now, that is one prescription I would kill for — if it actually worked!

I can’t change the past. I can’t change the fact those doctors treated me like dirt. I can’t change the sleepless nights or the worry in my family’s eyes. I can’t change the years of suffering it took for me to be taken seriously. I can’t change the opinion of people who, from the moment I meet them, decided to be prejudiced against me. I can’t change my health. I can’t stop the pain that often leaves me in tears.

Here’s what I can do: I can choose to manage my health in such a way that the old me — what I love to do — gets out more often. Maybe not in the way I wish I could, but in the way I can. It’s the little things, really, that pain makes me miss out on the most — like laughter with friends, family time, or enjoying the outdoors. Those are also the things that I’ve been learning to do just a little bit more of. Not pushing myself to the point of collapse. Heck no. I’m just learning to fill my time with what fills me, because it’s plain crazy to keep doing things I don’t have to that only sap my strength.

So, to clarify, when I’m talking about what we can choose, I don’t mean it like an ignorant doctor might. I don’t mean to tell you what to do or act like I know better, because I don’t. I’m just passing along what I learn as I learn it. What I mean is like this:

You already have such a heavy burden to carry. Don’t make it heavier by piling on things you can’t possibly control, because you were never meant to have the weight of the world on your shoulders. And I know there are times when you just break down crying, because it’s too much and then some. That’s alright. That comes with the territory. We’re all scared out of our minds sometimes.What I’m saying is: when it’s time and when you’re feeling up to it, what’s a one small, stress-free thing that you can do that fills you up on the inside? Whatever it is, enjoy it.

Getty photo by Olena Kaidash

Originally published: September 9, 2018
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