Saturday, August 27, 2016

Caged Animal: Part 1

For this post, I’m going to do something that is completely out of character for me. I’m going to tell you how I REALLY feel instead of how I want to feel. It’s never easy for me to disclose what’s really going on with my health; I’d much rather paint a pretty picture and leave it at that. I don’t want to be judged for having bad days. I’m supposed to be a superhero, and superheroes don’t have bad days, do they? But, I want to be honest this time. I don’t want to hide behind another pretty picture. I don’t want to be a superhero if it means I can’t be honest.

A caged animal. That’s literally what you begin to feel like when you have to live your life within such tight boundaries. I mean, I guess it’s OK in the beginning, when you’re still oblivious.
I was tested for food allergies way back in elementary school. After the test results confirmed an allergy to dairy, I immediately stopped eating dairy. I remember having sushi for lunch sometimes and all the other kids were like, “EEEEWWWW. What IS that????” Yeah, I was that weird kid who ate something unusual for lunch. BIG DEAL!!!! It bothered me a bit, but I didn’t have the capacity to consider having to be that “weird kid” all the way into adulthoodDespite our efforts, eliminating dairy from my diet wasn’t enough. It didn’t stop me from throwing up ALL of the time. In restaurants, out in the parking lots of restaurants, in public bathrooms, malls, shopping centers, in our friends’ cars, friends’ houses, family outings, anywhere in our house all night long…EVERYWHERE. Of course, this was in addition to chronic pink eye, chronic strep throat, endless trips to the school nurse, bizarre rashes, chronic stomach aches, the mumps, tons of absences, cyclic vomiting… The whole nine yards. There were even times when my family and I would get into our car to go out and once we reached the intersection at the end of our neighborhood, I would tell my mom to turn around because I was going to be sick. BUT, I was too young to see the big picture. My world was still so tiny. I only saw what was two feet in front of me. Then came middle school. More broken bones. More chronic stomach aches. A wicked case of pneumonia. A cough so serious that I was forced to get help from a speech therapist. I needed someone to help me stop coughing because the principal was angry about my disruptive coughing. Double ear infection. Sprained ankle. RSD diagnosis. Tick bite (that would not be acknowledged or addressed for another 10 years). Pain. Lots and lots and lots and lots and lots and lots of pain. Humiliation. Misunderstandings. Frustration. Sadness. Anxiety. Confusion. Disbelief. Dropping out of the eighth grade due to the unbearable amount of pain I was in, plus the fact that it was hard for me to even walk. Homeschooling. No friends. Moving to Philly. A month spent at Children’s Hospital of Philadelphia in an inhumanely rigorous and intense physical therapy program (in an effort to squash my relentless RSD that was spreading throughout my body like wildfire). I remember my very first day. I was answering basic questions from some gentleman, and I remember telling him that I was so excited/happy to be there because it meant I could get better. The guy gave me a strange look and said, “It MUST be your first day.” I thought, why would he say that? What’s so wrong with me feeling happy about being here…? There were times during the program that I wanted to die. The pain was so intense that I couldn’t stand being alive. RSD is pain, so basically I worked out whilst in excruciating pain. I would tell my PT I was having my period so that I could get off the treadmill, but what I really did was run to the bathroom and call my mom. I lied on the floor of the bathroom and called her, telling her to get me the hell out of the program. And my PT would come to the bathroom, pull me out, and put me back on the treadmill. When I would come home in the evenings to our little row house in downtown Philly, my mom would have to basically carry me up the stairs because I was in too much pain to put one foot in front of the other. Every day was filled with EIGHT long, never-ending hours of hardcore, hellish, militant-like physical and occupational therapy. Every night ended in tears. Every morning began with tears and dread. Kids at my middle school thought I was dead. Food limitations? HA! Those were the least of my worries at the time. I was too worried about losing my ability to walk since the RSD had spread from one ankle to the other, as well as up my legs to the rest of my body. The pain was debilitatingI’d say it was almost paralyzing. It was like I was spending my life in a torture chamber, and there was no way out. 
*To be continued* 
Love and healing light,