Dear 15-year-old me,
You are sitting in the neurosurgeon’s office’s waiting room. You’re annoyed, yet scared out of your mind at the same time. You have always known you have hydrocephalus, but have you ever really known what that meant? Probably not. You just knew you had a shunt in your head and knew it kept you alive, but you had no idea what life was like on the other side; you had absolutely no clue that every other person with hydrocephalus’s life wasn’t any different than yours.
Boy, were you wrong. You have no idea where to turn. You have no idea what’s in front of you, and you’re terrified to learn what it is. You have so many unanswered questions in your head, and you want to know the answers, but at the same time you don’t. You will be asked many questions throughout the next few years, and I hate to break it to you, but none of them have very uplifting answers. But you will stand despite all the hardship you face.
Because living will become your only goal, and you will learn the true meaning of the word. You will realize that it doesn’t simply mean breathing, that it doesn’t simply mean the monotonous day-to-day everyone complains about. Over the next 15 years, you will spend more days in the hospital than at home. You will have to relearn things you never thought about, such as talking, walking, and writing your name. But you will wear every hardship you encounter as a chain of diamonds. You will just add to them with each experience you encounter. Every scar another story.
This may sound strange, but relish in the horrible times. Because it’s during these horrible things that happen to you that you will be forced to see how good you had it. You will miss out on a lot, but don’t worry, you will make up for it. The toll that the next 15 years will take on your entire family is immeasurable. Whenever your mom says, “Yeah, but you were sick,” as almost an excuse, again and again, in measuring how sick you were before, you will wonder, “Will I ever not be sick?”
You’ve stepped into unknown territory. Territory with fire around it but a pot of gold in the center, and you will spend the rest of your life chasing that pot of gold while trying not to be burned in the process. Yes, the fire leaves its scars, but somehow you learn to live with the pain that it brings to your life. You will learn how to hide the pain from nearly everybody.
But in the midst of the fire around you, you lose yourself, find yourself again, recreate yourself, and learn some pretty amazing lessons in the meantime. You will do things you never would have done had you not gotten sick, such as having a toy drive for the child life department at your hospital because you want other kids to feel that joy you felt during the Christmas 2005 when you opened your eyes in the morning and there were presents all over your bed. You were always curious about how celebrities felt, and you will get a tiny taste of this yourself when your thank you party for the nurses is heard about by the University of Chicago press and your story is featured in their paper.
However, even the good things in life come with a cost. Your hard times will continue to be a bit of a precursor to everything you do in life. People will always say, “Oh if I was sick…” and “Oh my gosh, I can’t believe how she does it.” All while you’re just wanting to be treated like a normal young adult.
You help people in your own small way, and the words of hundreds of friends help you even more. I know carrying the burden of chronic pain, as well as the uncertainty of your illness, seems impossible at times, but if you look to the people who are around you, you will gain strength from them, and you will realize you have to keep going. You have to keep doing what Dr. C said — staying alive so that technology can catch up to you.
Just remember, don’t take life too seriously. Slow down. That’s what your illness forced you to do, remember? It caused you to look at your life like it could be taken away at any point. You just celebrated your 30th birthday three days ago, something that 13 years ago, Dr. C was unsure if you would ever see. And yes, you’ve made the most of every additional day you have gotten. But just do me a favor. Don’t stop.