“ The thing is, when you say you are ill and then you come to class, you do just fine in class.”
“Yeah, well, just because I can perform under insane conditions doesn’t mean I should.”
I’m in grad school when I have this conversation about my medical condition. My medical condition that I had my entire life, that I had while an undergraduate at Stanford. I followed proper protocol, got my quarterly accommodation papers, informed all my professors, communicated if I was ill. I did everything a good sick person should do, and I did it all while doing my work at an extraordinarily high level.
It’s true, if you need someone to show up for a day and dazzle an audience with magic tricks while simultaneously fighting the power structure, I’m your girl. What you don’t see is the two weeks of agony that follow, and the weekend before when I sleep to prepare. You don’t see all the pills I take to maintain. You just see my performance.
It’s a little later now and I find out I’m on some kind of secret list. If I miss class, my professors have to report it immediately. The ones who like me, confess this to me, promise to let me sit in the back with my head down on my bad days. While my classmates skip Special Needs class and turn in papers late, I’m struggling to teach twice as many classes and get my things in on time. I have been put on notice and I have no room for error. I know because the dean of the school of education tells me so. I know by now that they are looking for an excuse to drag me back in. I start going in once a week to Vaden to get toradol shots. I tell no one.
I became so sick in November of that year that I passed out. It happened the same week one of my best projects is being implemented in a classroom. I think about dropping out, but quitting was a beatable offense in my house and I love the kids.
God, I fucking loved my kids. I taught them and then threw up in between each class. No one sees it. I had learned in previous years to hide the signs of my illness or risk making my peers extremely uncomfortable. My friends are frustrated. Why don’t they see me anymore?
I didn’t plan to live this long on this planet, so I had no game plan. I just figured I’d do what good I could with the time left. Do it well. Balls to the wall or not at all. I’m hardcore. All that shit.
Did I mention that my earliest memory involves get smacked on the head for not working fast enough? Did I mention that I’m working too slowly in that memory because I’m already getting headaches? I leave traditional high school my sophomore year, after I’m hospitalized and I finally stop performing. My grades dropped.
My mom didn’t want to help me, she was of the opinion that I should just power through because I could. I forge documents and enroll myself in school. On the day I’m set to transfer out my English teacher asks how I’m going to go to college if I can’t handle “being in a normal school.” In three years, I’ll come back with a Stanford acceptance letter and say watch me.
I’ll be right too, because I’m going to kill it at Stanford. I graduate with a high GPA, and an even higher one in my major. I’ve been part of starting a movement. I’ve put on public performances and I’m one hell of a researcher. I did it all sick. But you didn’t see me take the Vicodin at 7 in the morning on graduation day so I could make it through the proceedings. And you didn’t see the two weeks I slept afterwards.
I used to stay during the breaks they let me, at Stanford. The dining halls were empty and Stanford was blissfully quiet. I could sleep in the dorms for a week before my next quarter. When I went home, I crashed on the couch for most of winter break, trying to sleep it off.
Some of my students knew. Kids are perceptive like that, plus they love me back. That’s why I love my students. They know how to love people back and how to accept them for who they are. I tell my kids with anxiety, that they can always walk out of the room if they need to. I understand, I’ve been there. And that girl with the migraine? Turn your paper in later. And my kid who tries to kill himself in January?
I’m going to get myself in a lot of trouble for that kid when I don’t input his grades because I don’t want him to feel like he’s digging out of a hole. We make up alternative assignments, have been communicating about this for months. He’s an AP student, and has been a great kid all year. The last day I work, my boss calls to tell me he’s concerned that this kid is passing only my class, why am I not failing him like everything else? I stay 3 hours to show him my work, my grading, to explain bell curves and accommodation letters and how a kid can be high performing and very sick and very in need of our help.
The next morning, I wake up and don’t walk again for 4 months. Teaching career over. I fell on my sword and I promise you that I smiled while I did it. My doctors are happy; they finally have an excuse to put me out of my misery. I’m done. I know I’m done. I’ve known I was done in September when my specialist told me he had no idea how I got anything done but that he wasn’t going to tell someone like me that they can’t work.
“Are you in a supportive environment?”
I don’t know, so I lie. He sends me off concerned, sends me back to my doctors who will brace first my ankle, then my knee, then my wrist and then and then and then.
The difference between the high school I succeeded at and the one I didn’t is that the independent study program was supportive. The difference between Stanford grad and Stanford undergrad was that my undergrad professors were supportive. They believed me, they accommodated me, and yes, they were inspired by my tenacity in the face of illness and suffering. They knew I was smart, and they knew I was honest.
And I still can’t help but feeling like so much of that had to do with class. Because that student who tried to kill himself? He hadn’t missed anymore days than that stoner, upper class, white boy no one has asked about. And my friends in carpool? They seemed to miss class and get extensions in graduate school. And that Asian woman next to me in Palo Alto medical center, whose father directly asks for anxiety medication because of “some family problems” as she wails, did not get shipped out to an ER with a severe stomach problem and the words, “pyscho-somatic” in the file.
And now? Now I can dance again, I could probably run (but I shouldn’t), I do yoga. I feel better than I have EVER. Considering that last year I sustained a major concussion and couldn’t walk for long stretches after I injured myself twice and that I was coming back from a wheelchair, that’s FUCKING MIRACULOUS. Ehlers Danlos patients are supposed to take an injury like the ones I sustained teaching (I had three total, one of which was a result of a student), and be done. It’s a downward slide. Protect yourself against injuries at all cost, because once it happens you are done. You know what the difference between then and now is? I have support. I have love and resources. I’m not in this struggle by myself trying to prove to everyone that I am both sick and capable. Now imagine what I could have done if I had a better upbringing and was living in a supportive environment the whole time.
Think about that the next time you judge the people around you.
Now, if you’ll excuse me, I’m going to go figure out a way to make it through life while running a marathon and not a sprint because I have a lot of years ahead of me to torment people with my glory.