I’m at work where there is a serious lack of students to tutor. The one regular is a blind girl who needs things read aloud or typed for her and various other things my disability prevents me from doing. We joke about what two little disabled girls like us are doing in a place like this. I work part-time as a writing tutor in a tutoring center at a local university. She’s a full-time student here.
Speaking of that disability, ever since being diagnosed with fibromyalgia, I’ve had to change my life in a number of ways. I’ve had to stop being an overachiever who abuses her body. When I was teaching full-time, my MO was to work for until my body gave up. I spent Sundays, evenings, any minute I had to spare, really, planning, grading, typing, printing, decorating, and innovating. I never stopped. I was a machine. I would crawl out of four-hour sleep spurts; swig a Pepsi in the morning and go. My students came to class because my class was rarely boring, my anecdotes were totally off-kilter and well, I told them and showed them that I loved them and cared. I kicked their little butts into shape.
Now, nearly two years after leaving teaching, I have to do LESS and do things in little spurts when I do have energy. Instead of Pepsi, I swig down medications with all the side effects they bring. But now my body can give up after an hour or 10 minutes or 5 and when it gives up, it’s like having a full system crash. Body aches and pains. The nerves along my body feel like they’re on fire, having people touch me is torture. And THEN my immune system hits a lower level. I might need to sleep 15-hour stretches. I might be “sick” for days before “my system” stabilizes. It’s all about finding a balance and any imbalance causes physical and mental wars to break out. And most days, there is an imbalance.
Like depression, people don’t talk about being physically ill. They get a cold. They get better. They take care of themselves or someone takes care of them. They get over it. But I’m always some kind of sick. In fact, I’m starting to think that it’s my new full-time job.
When I stopped teaching and went on disability after my second year of teaching, I told people that I was taking a break. My husband still told people that I was a “teacher.” And that would lead to all sorts of confusion. But that’s how he really saw me, I was a teacher. That’s how I saw myself.
When the disability ended, I didn’t go back to teaching. Instead, I helped plan my big fat Jewish Dominican wedding. No one really asked what I was doing and I think people assumed I was either teaching or that the little stint being sick just got better or manageable. But it hadn’t. The stresses of the wedding and the stresses at the wedding caused my body’s equilibrium to go haywire. I got a cold the weekend before my wedding. My immune system completely crashed. My body went into massive pain overdrive and I started crying hysterically when my friend came to hug me at the big dinner table set up in the middle of the wedding hall. Ouch.
So, now I tell people that I’m a writing tutor and some of them don’t know how I got to being a tutor from teaching full-time. In fact, they don’t really understand how a 27-year-old isn’t working full-time, especially since they can’t SEE my disability. So for a while, I threw myself into a certificate to become a Fitness Instructor. I figured if my body responded to exercise well then I should pursue that. Forget my useless Education Master’s, I needed to move on. But I couldn’t work part-time, stay healthy and do all the work for the certificate. That’s when I considered getting a t-shirt that said: “FITNESS INSTRUCTOR SCHOOL DROPOUT.” That way, I didn’t have to answer any questions.
Now, people think I’m a writer. Because a little Jewish publisher is waving a contract in front of me and like a little bull, I’m charging towards it. Mostly, charging. I’m terrified of failing. Terrified of contracts, for that matter. I’m terrified that people will think that I’m not a part-time tutor and a full-time out-patient. They’ll think I’m a writer. That I spend hours (or can spend hours) churning away at pages of Oprah’s next book club choice or win the Nobel prize in Literature.
When I watch how hard my husband works towards his career as a rabbi and see friends buzz around me as they take Master’s classes at night, plan out their life goals, I find myself distressed. I feel like I’m stuck and I’m watching them go forward.
I have no plan. Nope, no color-coded career plan. (Because you know, back in the day, mine would have been color-coded like everything else.) No life plan. I find that when I make plans, they’re too large to fit into my new little life. They don’t make sense.
So, I guess I’m a full-time out-patient? And having fibromyalgia means more than changing my BIG life to cope with it, it means changing the way I think about the future, the past and the present. It means my life doesn’t fit into the little boxes people put in front of me:
Are you pregnant? Are you trying to get pregnant? (And therefore, on bedrest?)
Are you a stay-at-home mom? (Because, otherwise, why don’t you have a job?)
Are you still in school? (Why else would you be working part-time if you already have a Master’s and don’t have kids?)
Are you switching careers?
No, I guess I’m trying to get better full-time. I’m recovering from the diagnosis of a chronic illness. And recovering means learning how to live with it and the new me. No easy feat when pain levels are at a 10 out of 10, I need to be at work in 15 minutes and I have three doctors appointments scheduled for the week and five and a half hours at the gym to put in. And yea, maybe, on the side of all that, I’ll write a book, become a super Rebbetzin, a conversion guru, a buff gym rat and well, whoever I was meant to be.