A Letter to the Illness That Took Away the Old Me


Well, actually, I don’t know what to call you. I could call you “gastroparesis,” but that’s just your first name. I’m still trying to find out what your last name is and how many middle names you have. My digestive system wasn’t enough for you, so you’ve taken up residence in other parts of my body as well. You don’t have an official name yet.

RCH TPN But name or no name, the struggle is the same. You make every day a challenge, and you make being alive more complicated than it should be. I can’t eat because of you, so I eat through a tube in my abdomen and a central line in my bloodstream. I take medications to help my body do the things it’s lost the ability to do on its own since you showed up.

There are so many things I hate about you. I hate that you make me doubt myself and doubt my instincts. I hate that nothing in my life can be spontaneous. I hate that I can’t just have fun without paying you for it. And I hate that no matter how hard I try, no matter how carefully I track you and no matter how conscientious I am, you still surprise me, exhaust me and leave me confused on a daily basis. Thanks to you I had to give up a job I loved. Thanks to you I had to drop out of university. Thanks to you I spend more time with my doctors than I do with my friends. And thanks to you I watch those friends move on without me and achieve the same goals I’ve had to set aside.

But thanks to you, I’ve made some new friends. I’ve met so many wonderful people. Doctors and nurses, yes, but also fellow patients and kindred spirits. I’ve learned that shared experiences can bring people together in a way that overcomes the geographical barriers keeping them apart. I’ve been lucky enough to find my tribe. They’ve given me unconditional support, and I’ve learned how to offer that support in return.

I kind of hate what you’ve done to my family. I hate the stress, the worry and the helplessness they feel. You haven’t just taken away my freedom; you’ve taken away some of theirs, too. But on the other hand, what you’ve done to my family is kind of beautiful. You’ve strengthened our connections, and you’ve given us a lot of opportunities to be there for each other when we’re most vulnerable, which is also when we’re most honest, when the knots are tied the tightest. Throughout the past five years, I’ve never felt more discouraged, frustrated, tired and lost, but I’ve also never felt more loved. I know that’s because of you.

You’ve caused me a lot of hurt. I grieve my old, normal all the time. I grieve the me who was always on the go, who thrived at school, who was involved in everything and actively trying to make a difference. She was motivated, hardworking and full of energy. She was smart, and she was going places. I liked her.

My new normal is different. The new me is quieter but wiser. More tired but more patient. The new me is better at giving others the benefit of the doubt and has a better awareness of the fact that everyone is going through something. She’s slower to judge and quicker to empathize. She knows how to ask for help, and she keeps going no matter what.

And you know what? I like her, too. I miss the old me, and that hurts, but I like the new me, and that heals.

So how can that be? It doesn’t make sense that you can hurt me and help me, that I can hate you and appreciate you. There are more challenges in my life now, but there is also more joy. You’ve taken a lot from me, but you’ve made me more grateful. How is that possible?

It’s possible because of what you’ve shown me: that there are two sides to every story. There are triumphs in every hardship and successes in every failure. There is good in everyone and everything, just as there is bad, too.

The thing is — I get to choose what I see. And if I look for the good, I know I will find it.

You taught me that.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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