I’d had a rough ride through childhood and had spent it going in and out of hospitals due to gastroparesis, an inability to maintain a normal heart rate and rhythm, blood pressure issues, frequent passing out, hypovolemic shock, frequent infections, and dehydration. For much of my childhood, I’d been dependent on an NJ tube for feedings. I’d been followed by an adolescent medicine doctor, a gastroenterologist, a cardiologist, a psychiatrist, a therapist, an infectious disease doctor, and a nephrologist (kidney doctor). It was a couple of days before my one-month follow-up with Dr. Green, the nephrologist, but on July 2nd I was celebrating my nineteenth birthday and I was also celebrating my graduation from high school and the end of my first year at Holyoke Community College. My family and I were too busy to worry about how disabled I was, we were celebrating two major milestones in my life on one partied-up day.
I had been getting my last few high school credits by taking creative writing, intro to psych, intro to sociology, biology, child psychology, and calculus. I had taken the CLEP tests for English 101 and 102 so that I didn’t actually have to take those two classes. By taking the CLEP tests I proved I already knew all the content in those two courses and automatically got the six credits for them. More importantly, by taking the CLEP tests I got automatic entry into the more advanced and more fun, creative writing class, without needing to sit through English 101 and 102.
The courses that I had took, I loved. They left me sitting at the edge of my seat, ears tuned into only the professors, pen scratching away taking copious notes, with all thoughts of childhood bullying left behind.
However, it was much harder to catch up with college classes than had been the case with homeschooling. I missed classes due to hospital stays and squeezing doctors’ appointments around classes and studying was a nightmare.
The summer I turned eighteen and was trying to figure out how to sign up for college my mom reached out to the board of education to see what the steps would be in getting me my high school diploma.
The board of education and the state had suggested to my mom that I get hooked up with an agency in Massachusetts (the state we lived in) called MassRehab. It was an organization to help people with disabilities achieve meaningful careers. Despite the fact that I knew I had gastroparesis, PTSD, and a developmental age of eleven, that was the first time I thought of myself as disabled.
The organization met with me several weeks after my eighteenth birthday. We had explained to them that I was still technically in high school, but wanted to finish up my credits in community college. They went over the high school transcripts my mom had made up of everything my parents and tutors had taught me and immediately agreed that they would be able to meet with me and see what they could do to help me out.
MassRehab hooked me up with a counselor, Susan, who told my mom what paperwork to bring with us to our upcoming appointment and what to mail ahead. I let my mom be my safety net, knowing in the back of my mind that some good guys might be speared in the process. Still, I figured no medical issues were being discussed, and my mom was beyond helpful in figuring out the best situations for my education. As far as educators went, both my parents were on the highest, most skilled tier, that there exists with PhDs and Masters degrees. So, I snuggled into my safety net and let my mom take the reigns.
At the appointment with MassRehab Susan had all of the information that my mom had supplied in a big thick file in front of her. She kept repeating how smart I was and how impressed she was with me.
“However, I think one of the first things you’ll need to do, to get the most help from our agency, and the most monetary compensation for your education and job training, is to get on social security income (SSI) and MassHealth (Medicaid). You should have no trouble getting on SSI. With all of your medical and psychiatric needs, I’ll eat my file cabinet if you don’t get it on your first try!”
I didn’t know much about SSI or MassHealth, but it did bother me a little that she thought I would get on it so easily. I did know social security was for people who were either too old or too disabled to work and I knew I certainly wasn’t too old and didn’t feel too good about falling so easily into a category of people who were too disabled to work.
Plus, she had mentioned psychiatric issues, and my skin had tingled in a familiar dance. Somehow, I knew my mom had been at it again. Yes, I knew I did have psychiatric issues, I had an anxiety disorder and I had major depression, but I didn’t want my dirty laundry aired all over the place. My psychiatric symptoms embarrassed me, but they had no effect on my medical conditions. The problem was, once you got diagnosed with a psychiatric condition a lot of medical personnel automatically assumed that you could have no medical issues whatsoever, everything had to be caused by the mental health issues. It’s almost like they assume somehow mental illness makes you immune to physical illness.
I’d also had a lot of trauma in my life that had caused PTSD
The worst part of the PTSD was not from the physical or sexual abuse, it was from the psych unit I had been on at age ten. I had been repeatedly vomiting from the gastroparesis itself and the bowel obstruction that I had developed that hadn’t been caught for days and days. Every time I had an episode of vomiting, I had privileges and ‘points’ and ‘levels’ taken away, and was chastised for purging and sent to my room as if I could control it.
Also, sometimes when I threw up, the tube would get thrown up and it would come curling up and out my mouth and they would tell me I was at risk for choking on tube feed and dying. they would then decide to put me on suicide precautions, take away my shoelaces, make me wear a hospital gown, take away all my toys, make me sleep in the Quiet Room (seclusion room), and not be allowed to be more than an arm’s length away from staff.
Other times I threw up the whole tube and I would be told I pulled it out and they would tell me they had seen me do it, even though I knew I had just thrown it up. No one would believe me when I explained the truth, they would just listen to the nurses and aides who swore up and down that they’d seen me yank it out.
The psych unit had also given me PTSD symptoms when they told me that I wasn’t in pain and that if I kept lying about being in pain no one would ever believe me. I was told this the day before I was found to have 2.5 inches of necrotic dead bowel in my belly and had to be rushed into emergency surgery.
All of my doctors, even the good ones who knew I had severe medical issues also knew I had psychiatric disorders.
I did have anxiety, depression, and Complex PTSD, but according to my parents, that was the extent of my health issues. At least my good doctors understood that I had irrefutable test results showing that I also had gastroparesis and some form of dysautonomia whatever that was.
Susan explained to my mom and me that we would need to get doctor’s notes and hospital notes from the present dating all the way back ten years prior, from everywhere I’d been, as well as getting all my school records. She said that they may request more information once we gave them the initial reports or they may ask for me to be evaluated by someone from their department. She also said that there was a chance I’d get denied and that we’d have to appeal or get a lawyer, but she thought that was, “highly unlikely given “how severely disabled you are.”
Once again that statement made me squirm. As I said before, I knew I was sick. I knew I had to miss a lot of school for being sick. I knew I was in the hospital a lot. I knew I had a lot of doctors. I knew I had extra medical gadgets. I knew I’d been homeschooled because I’d been too sick to go to school, but I’d never actually applied the term disabled to myself.
Something about the term “disabled” seemed so permanent. I’d always thought in a few more years I’d get better. My parents had always reinforced that view, yet here I was, eight years later, on the cusp of adulthood, sicker than ever and being told I was so disabled that I’d get accepted for SSI and state Medicaid on the first try with no lawyer.
Later on, in life, my parents would tell me that the only reason I didn’t get SSI and Medicaid sooner (before I was eighteen), was because my parent’s income had made me ineligible. Their combined income of over six figures was way too much for me to qualify for SSI while being their dependent.
Sure enough, just as Susan had suggested, I was approved immediately for SSI and Medicaid. I wasn’t sure if that was something one celebrates or frowns on, but I liked the idea of getting some spending money each month, although a good portion of it went to my dad as my rep-payee. He took it to take care of me and pay for my medical bills and clothes and the small amounts of food and drink that I could actually take in by mouth.
Once I had gotten on the necessary programs MassRehab had explained how they would help me come up with a career goal and then ways to meet my goal.
After that, I enrolled in Holyoke Community College for my last year of high school with the goal of a career in nursing and getting a liberal arts degree from HCC (Holyoke Community College) before transferring to a four-year college to complete my BSN in nursing. MassRehab was paying for all of my nine credits a semester at that point, as well as all of my books, and they had helped me get hooked up with a woman named Erin in the office for students who were disabled.
The office for disabled students wrote letters to each of my professors that I needed to be able to sip on protein drinks and/or have small snacks in class due to a specialized medical diet I’m on when I don’t have an NJ tube in. They also wrote that I need to be excused for extra bathroom breaks and have to have a designated note-taker in class for when I have to miss class due to hospitalizations.
It had been a struggle to set everything up for me, but now on July 2nd, the celebrations were hearty.
