As I write this, my vest is making my fingertips shake even more than the albuterol running through my neb. However, why am I really shaking? Is it the treatment I’m currently doing or did it start long before the treatment could be to blame?
Today marks a new chapter in my new “adult” life. Today I have to walk into children’s hospital as a nineteen year old and say goodbye to the pulmonologist I’ve had since the ripe age of three. Doctor Wheeler has been around for longer than I can even remember, seeing me at my best as well as my worst. As a child he would do anything to cheer me up when I wasn’t feeling well even if that meant bringing toys to my hospital room at 7 pm, sitting with me to listen to my whine and cry, putting hospital gowns on my stuffed animals, you name it. He was also there to educate me on my disease and answer all my scared questions as I got older. Not to mention comfort my parents when they would be beside themselves over hearing upsetting news, as well as to educate them.
At nineteen what am I legally old enough to do? Go to certain casinos, and buy scratch offs. I can’t drink, I couldn’t buy a pack of cigarettes if I chose to, I can’t gamble most places, I can’t even rent a car. Yet, I’m legally still an adult? I should be able to go to doctors appointments alone, be alone in the hospital, not to mention know what I want to do with my life, figure out how to not over work my body while still trying to afford the price of living, and now go into the adult medical world? It’s bullshit.
For anyone else in the same boat as me, here is my confession. I still cry when I’m scared and sick. I still want my mom to be there when I have to have a procedure or even just go to a doctor’s appointment. I still have no idea what I’m doing trying to navigate this whole not working too much and being able to afford to live. I still want to call my parents when I feel like a doctor isn’t listening to me. I’m so sick of the medical world treating me like a child yet telling me to grow up and act like an adult. I have no idea how to make time for work, school, treatments, rest, and still, enjoy my life. Still make time for friends or even just to relax by myself. I still sit alone in tears because navigating this grey area of an age where I’m expected to act like an adult but treated like a child. I sit in tears because I’m nineteen and somehow feel forty and fourteen at the same time. I sit in tears because I wanted so badly to have the young adult life my friends get away in another state at college, not having to worry about being close to your team of doctors or parents if anything goes wrong. I sit in tears because I watch their social media where they are with friends constantly partying and having fun and just being a normal young adult. Not worrying about paying for their medicine or applying for disability. Having this illness and this disability is a lot more than being sick once in a while, and when you feel like your getting thrown to the wolves on your own you realize you had to skip a whole stage of life without being given a choice. Thanks for listening.