No Colon Still Rollin'
Your childhood may have memories you'll remember forever, like that one time at camp Jake lost his trunks jumping off the dock. Mine's the same, except that one time at camp is replaced with that one time in kindergarten my class had a scavenger hunt for the tube from Patrick's stomach!
It was through experiences like this that I became aware that although I think I'm "normal", my normal isn't everyone else's normal. But isn't that true for everyone?
Growing up I had g-tubes, j-tubes, ports, hickmanns, ostomys and a bunch of other things that I can't possibly remember. Now, I "only" have a g-tube (a tube that goes into the stomach) a jajunostomy and a Hickman central Venous line. So objectively I'm doing better, although I'll never be "cured".
My life has had its ups and downs. On one hand I got some sweet perks from being sick; spoiled was my middle name. But on the other hand, spending weeks in hospital, and never knowing when the next admission may come isn't an easy mind state to be in at any age.
New challenges always arise. When I was young my problems were from things like obstructions. You try to tell a 10 year old not to eat the piles of pineapple in the buffet at Mandarin. Even when my gut was backed up in a bathroom in the middle of Pennsylvania, I still thought it was worth it.
Now that I'm older, I know to avoid those types things, but I still have my ups and downs. As I write this I'm on antibiotics for a blood infection from a bacteria that got into my Hickman IV. This bacteria is nasty enough to break down crude oil... Throw me in the Gulf of Mexico and I'll clean that up pronto.
I haven't experienced life without illness, so everything I have done and experienced has been through the eyes of Hirschsprung's disease. As much as this may make some people go "Aww, you poor thing" I am thankful for the challenges I've faced, and looking back I wouldn't change those experiences.
It takes a special type of humour to see the hilarity of shitting into an bag everyday. Or to name the IV line that just got infected so that you can yell "fuck you Kevin" as you're being sedated. That humour is my key to being positive and seeing the silver lining to life. Life will always have its challenges, but seeing the good side of life and rolling with the punches will get you through anything.
I may have no colon, but I'm still rollin'.