When I met my husband, my life was on a general upswing. I was poor but happy. I had great friends. I’d just made the decision of a lifetime: to convert to Orthodox Judaism. I was making new friends for my new life. I was exploring uncharted territory. I was on a self-imposed man-fast. Because who needs men when you have G-d? (Did I mention when I was younger I flirted with the idea of becoming a nun and was nicknamed…”Mother Theresa?)
I didn’t love him instantly. It wasn’t love at first sight. In fact, when I met him I called him a “sedative” (he was so…relaxed) and at the same time wondered if he had anger management issues because he was so enraged, scowling out a window because other men were trying to monopolize my time at the party where we met. But he grew on me. Once I stopped seeing him as a baby (he was only 23! I was the great mature 25!), it was like getting hit by a freight train. How do you know someone is the one? You just know.
The weekend I first met his parents was surreal. I’d never been to LA. I’d never met anyone’s parents and actually liked them. And there I was talking to them like I’d known them forever in surroundings that no welfare child could dream up. Or maybe it was surreal because of the vicodin? That weekend I took off from work because I had so much pain in my face and needed to take narcotics until the dentist could figure out what was wrong. He was hinting that there could be something neurological but I wasn’t hearing it, I mean, I was in love!
Too quickly, we had to come down from our life in the clouds, off that elation you get when you’ve just falling in love and don’t need food, sleep or any other social interaction with people that aren’t the one. After many painful doctor visits all over the city, I was diagnosed with fibromyalgia. I was told by one doctor that I was lucky: “At least you don’t have a brain tumor.” But I was shaking with sobs as I told my family (my husband and my two sisters). I was glad to finally know where the pain was coming from but horrified that it was something incurable, lifelong and so physically, mentally and emotionally painful, so draining.
If you need help, I am your go-to girl. When I was younger, I was forced to help my sisters…sometimes at knife-point or under threat of further bodily harm. By the time I was an adult, it was just something I did, no questions asked. I would do anything for my sisters, make any sacrifice. And because of the example of some amazing friends, I became that kind of friend, too. Anyone I allowed in my inner circle was like my sister, even the boy friends.
For a long time, my sister and my husband only had each other to turn to about my health woes. No one could turn to me. I went from being “a rock” to sobbing in the classroom. There I was begging my students to be quiet because the noise they created while chattering felt like punches wailing at my body. I couldn’t write my name without excrutiating pain. I couldn’t imagine the rest of my life. And I didn’t know why my future husband didn’t run away. After all, he hadn’t signed up for this.
My husband and my sister are two of the strongest people I know. They balance each other out well. If I try to do more than I’m capable of doing because of my disability, my husband tells me not to worry, someday I will be able to do it again or I will figure out how to do it differently, while my sister takes care of it, whatever it is, again, no questions asked. My support group of two has been invaluable as I worked myself up from hell, the utter depths of despair, to a place where I could look forward to tomorrow because I knew that on the days I couldn’t love myself, I was surrounded by love so enveloping that it permeated through the pain.
My husband and my sister are heroes. No one really gets to see it. Everyone calls me the hero, the hero who kidnapped her sister, who fought for custody for three years, the hero that struggles with the burden of disability and learning to ask for more help that she ever could have imagined needing. But even though they’re silent, though they never complain, though they rarely let me see them cry or become disheartened by the twists of turns of my life, I know that everything has taken a toll on them. They are bonded together by the times they helped me button and unbotton my clothes because I lacked the dexterity.
When I wanted to quit teaching in the middle of the second semester of my last year of teaching, my students begged me to stay. Even though I had to wear ear plugs, even though I was so drugged, I sprained my ankle while teaching. Even though they had to “air hug” me from afar because my skin felt like it was on fire, my students assured me that I was their favorite teacher, the only one they could count on. They took up a collection to help pay for my medical bills. They told me that they prayed for my good health. They cried with me.
My husband, who cuts my food into tiny pieces without asking, told me once that this fibromyalgia thing was more than just about me. It was about how I would affect people because of it or in spite of it. Like my husband, my students learned to give of themselves more than they ever could have imagined giving. Where my coworkers failed to offer support, my students, children who were just becoming adults, walked me to class, checked up on me between classes, offered to help grade papers, carried my books and papers and listened and shared their pain. And I know, I wouldn’t be here right now if not for them.
I have seen all unimaginable levels of ugliness in human beings. There are stories I don’t tell my friends because it is easier to shelter people. If G-d didn’t mean for them to see such horrors, why should I be the one to tell them that they are out there and that they’re closer than they can see? But it is these sheltered people and those survivors out there who surprise me. If you let people, if you believe in them, they will never cease to amaze you and fill you with awe.
Now it’s back to bed. Fibromyalgia and jetlag don’t mix.
Memoirs of a Jewminicana 