Pretty wheelchair girl

It’s weird to call this “my story” because I’m still in the process of writing my story. Like, I’m only 37… I have a lot of story left to experience and subsequently write about. But when people look at me it’s pretty obvious that I have a story to tell. I have a VERY visible disability that sets me apart from your average, every day lady. I wrote a vignette for my friend Sandy several years ago about the onset of my spinal cord injury, which was added to a book he authored, about the anthropological perspective of patient’s experience with transverse myelitis. But that is the only I thing I’ve ever written about it… so I’m going to go there again.

I feel like I need to paint a little background first:
In late spring of 2005 I was a 21-year-old hairdresser with almost 1-year-old, identical twin baby boys. Me and my boyfriend Scott had been together for four years and had just broken up for several months, then got back together… for the third or fourth time. My entire identity was wrapped up in this boy. So much of my brain space was consumed with getting his attention. Does he think I’m pretty? Does he really love me? Does he want to marry me? Does he think I’m smart? I didn’t realize at the time how wildly self-conscious I was. I hated myself and I so badly needed to be shown my worth. It’s such a difficult space to be in when you’re also lacking self-awareness. Probably starting in middle school, I used to cry into my pillow at night and just beg for the pain to go away. I would get so sad and so miserable and so self-loathing. I hated being me and I just wanted to be someone else… someone better. It was like, I needed someone to tell me that I’m worthy, because my own thoughts of myself made me feel powerless and just wholly unworthy.

It probably didn’t help at all, and is worth mentioning, that I did not have a great relationship with my father or my stepfather, who were both very critical of me… Especially in my appearance. Instead of being built up and encouraged, I was regularly criticized. The first time I was told I looked like a slut, I was 13. My mom was only married to my stepfather for 4 1/2 years, but it was at a crucial time in my development (12-16 years old), and he also had two sons. I already had two brothers. So, for a time I was raised with four teenage boys whose primary male mentor had no qualms with calling a 13-year-old a slut for wearing black lipstick (I was super into Marilyn Manson). My dad never called me a slut, but starting around age 12 he would make negative comments about my yellow teeth, my oily skin, my weight, my boobs and my hair. Needless to say… when I got in my first relationship at 17, I had a maladaptive relationship with men.

Scott and I have known each other since kindergarten. We were born 10 days apart in the same small town, at the same small hospital. He was the weird, quiet chubby kid and the only reason I really knew who he was was because of my childhood best friend Natalie. She was boy crazy and he was her first boyfriend in kindergarten. So naturally, he was at all of her elementary school birthday parties. When my mom married my stepdad, we moved to a new city, so when they divorced we moved back. Suddenly, halfway through sophomore year, I was the new girl at a high school with kids I hadn’t seen since fifth grade. Scott was in my English class. We started dating at the end of junior year.

He was my first love. And I was so fucking head over heels for him. I just thought he was the coolest, smartest, most interesting and deep person. He was even more broken than me and I was hell-bent on fixing him. There was something so deeply reinforcing and validating with every interaction we had… Good or bad. We were so toxic.

We were 19 when we moved in together. We got a cute apartment with our friends, and wouldn’t you know it … It was a total shit show. We fought all the time. My entire existence was contingent on the status of my relationship. If we were good, I was OK. We were rarely good. I was 19, and I liked to party and hang out with my friends. He didn’t like any of my friends and held some pretty weird double standards when it came to partying. It was a constant struggle. Then I got pregnant.

As if it wasn’t already just fucking blazingly obvious that we weren’t right for each other, I’m four months pregnant and started to get more pushy about marriage, and he started to get more anxious about being a 20-year-old guy with kids on the way and a potential marriage. He was a virgin when we got together. I was not, and this was always a problem for him. He told me he wanted to experience sleeping with other people, which shattered my world into a million pieces. Why wasn’t I enough? What was wrong with ME? We broke up for the first time and I moved back in with my mom.

We did this all throughout my pregnancy, and all throughout the next year after. I just couldn’t ever let him go. We’d been caught up in this awful cycle for like two years, but now we had nearly one-year-old twins and were living together, yet again, in our own apartment. The status of my mental health during this time was at an all time low. And, I had just had twins, so I was the fattest I’d ever been in my whole life. I felt so hideous. It was like I was 13 all over again and I hated myself and just wanted to be someone else. Crying in my pillow had become a regular occurrence again.

It was Friday, May 20th, 2005. The boys’ first birthday was the next day and we had a big party planned with all our family and friends. I got off work from the salon I worked at and came home to our apartment that I had just started staying at again that week, because we had just gone through our normal cycle of breaking up, then getting back together… And it was already falling apart again. I can’t even remember what we were fighting about now, but we were fighting. I was physically, mentally and spiritually exhausted. I had put the boys to bed, then put myself to bed and carried on with my usual routine of sobbing face down in my pillow.

This night was different though. I felt desperate. As I sobbed and cried, I squeezed my pillow and writhed in agony. Everything hurt so much and I just couldn’t take it anymore. I begged God to take the pain away. I begged and begged and pleaded “please make it stop hurting! Please take the pain away! Please please please…” I repeated it over and over again as I cried. I was so miserable, and it was all his fault. If he could just be what I needed then I would be fine. If he just loved me better, if he could just change and be the man I needed, everything would be OK and the pain would finally cease. Scott came to bed, which was a bit strange because he habitually slept on the couch at this point. He laid there and listened to me cry for a good long while, but eventually I peeled my wet face off of my pillow and grabbed his face with my hands. And I begged him ”please be what I need you to be. PLEASE be the man I need you to be?” He looked into my poor sad eyes, nodded his head and said “OK.” That was all I needed to hear. I wanted to believe it so badly. I thought if he could just see how much pain I was in, it had to make him change, right? I felt powerless and unworthy and unwanted… Shit, I didn’t even want to be me. After his one word retort to my plea, we went to sleep.

I woke up early the next morning in preparation for the birthday party. I was tired and achy, which was usual since I was overweight, and unhealthy and absolutely fucking miserable. I felt this dull ache in between my shoulder blades and was certain I had tweaked my back. After an hour or so the physical pain became unbearable so I started making phone calls to chiropractors to see if I could somehow get an emergency appointment on a Saturday morning. I was curled up in a little ball in my bathroom, sobbing again and vomiting profusely. My legs were having strange, uncontrollable muscle spasms making walking very difficult, and then my hands started to go numb. I called my mom, she convinced me to go to the hospital.

By the time she got to our apartment about 30 minutes later, I had to be mostly carried, arm in arm, to the car by Scott and my mom. He stayed behind. By the time we got to the hospital 20 minutes after that, my mom had to locate a wheelchair, drag me out of her car and wheel me into the emergency room.

I did not make it to my sons’ first birthday party that day. Within a few hours I was on a helicopter being emergency transported to a larger hospital three hours away.

I was diagnosed with idiopathic transverse myelitis. I contracted an auto immune disorder that basically ate my spinal cord for breakfast, on my sons’ birthday.

The REALLY sick, sad, twisted part of all this: I got what I wanted. I begged and pleaded for the pain to go away… And it literally did, in the form of my entire body going numb because I was now paralyzed from the neck down. I was 21 years old.

Scott and I broke up officially the day I got home from the hospital, three months later. In many ways, that break up was way more difficult than the loss of my functioning body. Like I said, my whole existence was wrapped up in this boy. He had been partying and sleeping with other people while I was nearly dying in the hospital. There was no going back. Plus, he wanted nothing to do with me and my new body… he could barely even look at me. Two months later he got together with the girl that became his wife that he is still married to… and that is a whole-ass other story.

All of this happened so long ago that remembering it sort of feels like it was someone else’s memories. Probably because that girl doesn’t exist anymore. That powerless, unworthy and hopeless girl is a distant fleeting memory… mostly.