I was a rockstar in my freshman year of high school. I knew my teachers well, I made excellent grades, performed in the spring musical that went on to win several awards, and was even nominated for my school’s pride award. My friends were stable and loyal and together we were positive influences on each other and were bound to grow into amazing people.
In autumn of my sophomore year, I got sick. I thought it was some minor thing, that I’d miss a day, two max. But it was three. And four. And five. And I kept counting day after day of pain I couldn’t explain and exhaustion like I’d never felt it before, dizziness and fatigue off of my scale. Wednesday of the second week, I took my first trip to the doctor’s office, where I was tested for the basics, and told it was just GI difficulty and told to drink water. The pain did not stop. The next Monday, we went back to the doctor, I was tested again, and shown positive for Mononucleosis. I wanted to laugh. The Kissing Disease? I got Mono and it did this to me? I was sure she must have been kidding, until I went home that night to do some reading.
Mononucleosis, blood infection, virus. Herpes Family, Human Herpes Virus 4 (HHV4) also known as Glandular Fever, or Epstein-Barr Virus. Some link-following revealed that HHV4 has been known to trigger secondary or primary-dormant conditions in its host.
But I went to school on Wednesday. I had a test. My principal greeted me in the hallway before first period, and told me that whenever I was ready, I could go check in to the nurse’s station, and stay there all day. I said hello to all of my teachers and explained what was going on, and in third period, I was whiped out and needed a rest. I was done with my classwork, so it was time to take up the Principal on his offer. Only, he hadn’t been in contact with the nurses, he was just waiting for them to call when I was there. But when I was there, he was in a meeting. So they took my temperature, normal. My Blood Oxygenation, good enough. My blood pressure, fine. I was sweating through my clothes, crying, dizzy, and they said these things to me, in this order:
This is a place of safety and privacy, and you are disrupting the privacy of students who have come here to rest.
This is a public place, and you are embarrassing yourself. You need to go to the bathroom to calm down.
If you were sick, we’d be able to tell. You’re fine, you’re just sweaty and having a tantrum.
We don’t send people home for stomach aches.
If you were really sick, you’d be at home.
No, we won’t call Mr. Garcia, he’s in a meeting. We aren’t going to disturb him just so you can ditch your last period (theater, my favorite class.)
They sent me back to third period. There, I was met by friends and a substitute teacher who offered me the ice from her empty lunch cup to press against my neck. I laid on the floor with a girl who was having a cataract surgery soon. She held my hand, and told me it would be okay. I managed to stop crying, and went to theater. I stayed all day, and never went back.
The next Friday, I was in the ER, and was not planning on returning to school. In late October, I hadn’t had any real communication with my campus in weeks, and my counselor called to set us up for a Section 504 plan. They said it would help me get my work, they said I wouldn’t be marked absent for every day, they said I’d have permission to access campus resources whenever I needed them but wasn’t required to be on-campus as my peers were.
This was all a lie, of course, whether a deliberate one or not. A Section 504 plan will not alleviate the stress and struggle on its own. “What you really need is Homebound,” and “It sounds like you should be in SpEd,” and “Sorry, we would never say you didn’t have to come to school to do your work, there’s actually a law against that…” Filled the air and choked my mother and me. We didn’t know what to do, and the only people who knew anything about the system that we needed help through were legally obligated to enforce and encourage standard attendance and classroom process. There would be no accommodation made to allow me to work in the best way for me, on my own, without having to follow the schedule of anyone from any campus.
And yet, there I was at the end of the school year, in a Homebound arrangement. For four hours a week, the school’s AVID teacher came to the house to give me assignments and take back whatever I had completed. Here’s the catch: I was doing the same work in the same timeframe as my classmates, minus any and all classroom instruction, and if w did my hours on Monday and Tuesday, a project was assigned on Wednesday that would be due the next Monday, I was guaranteed to be turning it in late, and falling behind the class, that I was expected to rejoin when I “healed.”
Except I didn’t heal.
December: I see a GI Specialist who encourages us to enroll in a program called CAPP at Dell Children’s.
February: CAPP begins with weekly appointments of Talk Therapy in the GI clinic, and I begin Physical Therapy at the Outpatient Rehab Center of Dell Children’s.
March: My Physical Therapist notices some irregularities in my joints and muscles, and thinks I may have a pair of disabilities called Dysautonomia and Ehlers-Danlos Syndrome.
April: I am diagnosed with Dysautonomia by a cardiologist. The EDS is proven to be genetic-hereditary.
May: The counselors at school think that because I’m diagnosed that that means I’ll be coming back to school. In what world does finding out I’m disabled equate to coming back to school?
Some of my teachers worked with me. I got my English and History credits, but not Algebra or Chemistry. I moved up in Theater and Newspaper, but my Creative Writing teacher withheld my grades until it was “too late,” and my Spanish teacher did the exact opposite of help, which was drop a manilla folder of all of the work of the year on my desk on the Wednesday before the Friday cut-off for grades and work submission. That summer I got a job and immersed myself in the PT of hard work in a camp kitchen, and only missed two days out of eight weeks.
When school started again, I was more excited than I could have said. I had missed a whole year of my life, I was disabled and in ongoing pain that had become the norm, but I wanted nothing more than to get back into the swing of things. It didn’t work. Three weeks in, I was out. And everyone who knew me was shaking their head, saying “How can you work all summer in a hot kitchen for more than ten hours a day, but you can’t sit in a desk and listen for ninety minutes at a time?”
Let’s explain this.
Summer: Small group in a small space, tasks are the same every day, I can pause when and where I need to, I know everyone around me is watching out for me, the environment is stable and the work is easy, except for loading the dishwasher. Anxiety is minimal, depression is avoidable, nothing has significant weight or importance, as all things are short-term. I have time to look out for symptoms and signs that I may be about to have an episode.
School: Large groups that change multiple times a day, before and after a mad frenzy of a passing period in which a few thousand kids flood narrow hallways and make so much noise I can’t hear myself breathe. The tasks are different every hour, every day, and have a long-term importance beyond “lunch.” Most of the people around me “don’t believe” in my disabilities, and therefore are not looking out for signs I may not be aware of that I’m about to have an episode. I have several superiors who all think they were “right all along” about me being able to come back to school. Anxiety is through the roof. Depression is in the air. I have no time or energy to give to myself to watch out for warnings.
In the late fall and early winter, I began an Education Accessibility project called Camp Oak Hallows, and determined my Girl Scout Gold Award project, How To Teach a Spoonie. I knew what I had to do, and I wasn’t just doing it for me, I was doing it for every kid I shared that crowded campus with under the eyes of unempathetic administration, and teachers who would care, if they were paid enough or had the time. Public school had a whole new meaning to me, and it was bitter on my tongue to think that the system I was raised in, excelled in, thrived in, was suddenly unsafe, unforgiving, out of my reach.
I’m sitting here today, a future innovator of American Education.
Dear Future Presidents, I’m VL Gaffney, and I want to be your Secretary of Education.