I wish I could get someone, anyone to understand my situation. Especially those close to me. They don't ever understand, I'm just met with those sympathetic gazes and head nods while someone holds my hand or pats my hair.
They don't see anything else tho. How could they? How do you see someones body on fire? How do you see the immense pain someone goes through when they can barely hold themselves up. "Just another step for a stepper baby" hard to take steps when you can't even find it in you to get out of bed. Stuck scared. Scared that you had an accident in bed but it's just sweat. Scared to shower with the door closed all the way because what if you fall just right and hit your head again? Scared to admit that you're starving after not eating for an extended period of time because you can't hold down even water. How embarrassed you feel when you can't even go to the movies with your girlfriend on her birthday because what if the movie is "too flashy". The hopeless feeling of knowing that no amount of medication, no amount of brain surgeries, no amount of crying, begging or pleading will ever make it go away.
How do you describe to those you love that youd rather scream your lungs out and cry until your eyes bleed than feel like anymore of an outcast amongst loved ones?
"You're special" "you're just different" "you wouldn't be dealt cards you couldn't handle"
Try living everyday being treated like an invalid. Constantly being reminded of things you can't ever do. Normal things that will never, ever be part of your life.
Try living for 11 years knowing you can never fully enjoy your favorite holiday again.
11 years of feeling like you will never ever get to truly experience life because you're "different"
11 years with 2 neurological disorders that have no known cure, hell the most brilliant minds of our time couldn't even tell you what causes it. Only that you have it
11 years of my young adolescent life wasted.
4 years of University I will never be able to complete because there were days I couldn't even crawl to class, no matter how bad I wanted too.
11 years with one disorder.
22 years and 5 months with a congenital neurological condition you didn't even have a choice in.
22 years 5 months I will never get back.
11 years of being made fun of, ridiculed, bullied and patronized. Over something that you wouldn't have chosen if you could.
August 1996. The first of many many many trials and tribullations you never signed up for.
November 2010. Another tormenting nightmare as you sit in the ICU unit and silently cry as you realize that you aren't normal. You will never be normal. You were just 15. A freshman in high school. You knew nothing of the world. You didn't know yet that this would still be keeping you up at all hours at 23 and for the rest of your life.
Don't you dare patronize me and belittle me by saying "it could be worse"
Try being old enough to sign your own surgical release papers. Release papers freeing any doctors, hospitals, annestiticians, from any repercussions of a surgery gone bad.
Imagine reading about how if this team of people you've never met, have no reason to trust, makes one wrong move. Any little slip up at all and you're reading about how you're going to die on that operating table.
In the cold, unforgiving room that became your own personal purgatory after so many years. Repeatadly.
Only this time it's different. This time your family isn't there. Your friends? They are waiting in the waiting room comforting your husband. Noones comforting you.
The closest thing you get is the doctors voice telling you to count back from 100 and take slow deep breaths. In 23 years, you never even made it down to 97.
