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To 15-Year-Old Me, Who Didn't Think Anyone Saw Her Fight for Her Health

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Dear 15-year-old self,

I know the past few years have been hard, and I know for a while they are going to get harder. You’ll spend your days locked in either your room or a bathroom stall because you don’t want them to see you cry. You’ll struggle with depression and accepting you for who you really are. You’ll curse at God and ask, “What did I do to deserve this? Why am I being punished?” The answer is nothing. You did nothing wrong. You’ll go through hell, but then it will get better.

You locked yourself in a bathroom stall because you use a G-tube to eat and you were once told by an adult that the G-tube was disgusting and that you should eat in the bathroom out of sight. Then, you stopped eating. You felt that you were left out enough because of your health problems so you weren’t going to be left out more because of lunch. You lost so much weight during those years and you’re still working on getting it back, but your friends get mad when you tell the story of an ignorant man at the zoo and they don’t care when you set up your feeds in the restaurant on campus. You’ll ask every time but they will never care.

high school graduate at podium with aware
Mariah holding her award at graduation.

You walk those familiar high school halls, you see them all with their big plans for the football game or the guy who asked them out and all you can think is, “How long do I have this time?” I’m sorry but that question never goes away. When you get sick now it’s no longer as big a deal, and you will no longer have to deal with uncooperative teachers since in university the law is on your side. It is the law that they have to accommodate you now. I know you think no one sees your fight or sees the effort and hell you go through just to get out of the house in the morning, but by the end, they will all see it. You will stand at your high school graduation and be given an award for going through the hell you did and overcoming what you had to overcome to get there. When you were handed the award, everyone graduating that day stood and cheered. They saw the struggle at the end and they acknowledged it and acknowledged that you are awesome for getting where you are.

You feel like no one understands what you’re going through, and you’re right. The people you’re surrounding yourself with now don’t get it. They mean well; they just haven’t lived through what you did. You aren’t alone now. You have a whole community who shares your pain and shares your story. You have a community to turn to when you have a bad hospital experience, or your ventilator is being weird and alarmed all night and you think it was sort of funny. Not only will they get it, they understand.

People now tell you that the way you handle different experiences is completely valid and that they would have handled them in a similar way. One friend said not only was your panic attack in the sleep lab valid, he had one too and he walked out and said he wished he did what you did, which was freak out for 10 minutes in the dark, then fall asleep again.

I know life sucks right now. You want to be like everyone else and you can’t. Just know that you are so much more than your disability and illness. Your fabulous brain will finally get to shine at school — just give it a year or so. You will change the perspective of disabilities forever for your loveable band director. He ran into your dad six months ago and said: “I owe her, she changed my thinking about disabilities forever. A boy in a wheelchair wanted to go on the band trip and I said sure. I wouldn’t have agreed if wasn’t for her.” Adore him, he cares and wants to help, and he knows more than you think. You will have a long discussion about the spaceship (the pulmonary function machine) and you agree that wind instruments do wonders for damaged lungs. He will get cancer and when he beats it he says to you: “I now know why you freak out every time you get within three blocks of the hospital.” He apologized on behalf of the entire faculty on your graduation day for not making life a little easier for you and for not thinking about the steps for the stage.

I know for now you’re the weird girl with the medical problems and the physical disability, but you won’t be forever. Now you are the vice president of the History Undergraduate Student Association and you are volunteering at the Ronald McDonald House. You’re a fearless advocate for those with disabilities, and you aren’t as afraid of the hospital now. People listen to you there. They respect you. You no longer cower, but you stand up and demand what you need, even if that is for your dad to come over and guard your vent with his life because you don’t trust the nurses. In a year, they will ask you and not your mother what’s wrong. They will tell you what’s happening and you will be acknowledged as a person. An emergency room doctor will acknowledge your struggle in just a year and you will feel better. Right now you’re still the girl who tried to hide behind water fountains, but you won’t be that girl forever.

Never doubt yourself, girl. You’re worthy of love and life. You are not making anyone’s life harder. There’s more to life than high school. By the time you’re 21 your friends will understand what it means when you’re sick and will never question it again. You will help a mom come to terms with her son needing a trach and being like you. Life won’t be like this forever. It’ll get better, and you didn’t do anything to deserve the hell you went through. That hell made you who you are, so embrace it. Just don’t let it drag you down.

You are loved, you are wanted, you are needed. Never forget that.

Yours truly,

Your future self

The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences. Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 24, 2016
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