Dear 15-year-old self,
I know the past few years have been hard, and I know that 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 cut out more time because of lunch. You lost so much weight during those years, and you’re still working on getting it back but now 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.
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, but the answer is farther from 2 weeks and closer to 2 months. When you get sick now it’s no longer as big a deal, 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, 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 over coming 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 got.
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, 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 handled with at least the same amount of crazy, if not more, then you did. One friend said it was valid to hit the nurse for playing with your vent settings, it wasn’t but they understood reasoning. Another friend said that not only was your panic attack in the sleep lab valid, he had one to and he walked out and said that he wished that he did what you did, which was freak out for 10 minutes in the dark then fall asleep again.
I know that life sucks right now, you want to be like everyone else and you can’t. Just know that you are so much more then 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 then 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 behave 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. Maybe rethink the heels for that event, I know the reasoning but you get stuck trying for down the steps because of those shoes and the gown was huge, it took a minute and a half before someone came to help you down.
I know that 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 VP of the History Undergraduate Student Association, 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 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 what’s wrong and not your mother, they will tell you what’s happening and you will be acknowledged as a person. An ER doctor will acknowledge your struggle in just a year and you will feel better. Right now your still the girl who tried to hide behind water fountains, 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 then 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.
My Locker Room Epiphany
How Finding Nemo Gave Me Hope.
The House that Built Me.
A Curse for This Town; What a Beautiful Town
Words to Places; Scents to Memories
Move Around - Around - Around - Around
Why I hate going to public pools and the beach.
Spring and Such