I had my whole life planned out. I was twenty-five. For once in my life, I wasn't worried, wasn't looking over my shoulder or waiting for the shoe to drop. But then it did.
I was teaching 11th grade English in a NYC public school. I was a blur: a cloud of big, curly hair walking fast, talking fast, swigging Pepsi, underpaid, under slept, overworked and over stimulated. I was thin from walking several miles a day, and brown from a summer jetting from New York to the Caribbean to Florida. I had found my calling in my students; I was on a mission to mold their minds and change their lives for the better.
As a senior in college, I took on full custody of my younger sister"Slow down," an exasperated student would insist as I read rapid-fire in class, never enunciating, words always jammed together, faster, no commas, periods or pauses.
"Slow down," a colleague would yell as I rushed to punch in my time card seconds before the bell for first period.
But I was charging like a moving train, rocketing forward, rollercoasting through life. I was propelled forward by finally feeling at peace with the world and my place in it.
It hadn't always been like that. As a senior in college, I took on full custody of my younger sister for the next four years. Having to quickly come to terms with being a single parent, I floundered. I welled up with all the rage I felt towards my negligent parents and it poisoned my entire world. I spent my early adulthood irradiated with a fiery anger, on a destructive rampage, until the anger finally burnt itself out like a candle sensing a change in the wind.
When I finally packed my sister off to college, I decided it was time to take care of myself… physically, emotionally and especially, spiritually. So I decided to convert to Judaism. My faith in G‑d had been renewed by the realization that I had survived. Survived my abusive childhood and lived to tell about it. I would devote the rest of my life to thanking G‑d.
"Men and women don't touch," my best friend told me as we drove to a local Judaica store. He was fresh from yeshiva in Israel, an atheist turned baal teshuva, and schooling me in the ways of Orthodox Judaism.
"What's so special about a hug?! Seriously? I don't think I can handle that. I touch everyone. I mean, I even hug strangers!" I offered back incredulously.
"I know. Obviously, close relatives of the opposite sex touch each other. But touch becomes a sacred thing in Judaism. We make ourselves more sensitive to it by preserving and ensuring its deeper meaning. When a husband and wife touch, it becomes a holy act, transformed from just physical into an ultimate display of G‑d's love in the world," my friend responded patiently.
"Oh."
Well, it sounded beautiful... in theory. But there was just no way I was cutting my male students from their routine daily hugs. And how could I stop hugging my male friends? It would seem rude to them and nuts to me. I was Hispanic, after all, born of a culture of touchy-feely people.
I shook my head, telling myself that G‑d was going to get a lot of things from me, but being "shomer negiah," forgoing touching members of the opposite sex, wasn't one of them.
Then a toothache turned into neck pain. The neck pain shot up and down my arms. The pain wormed its way down my spine into nerves in my upper and lower back before careening downward to my butt and electrifying my legs and toes.
"It's not that bad," the Russian doctor said briskly as he paged through my chart. "At least, it's not a brain tumor."
After months of tests, it was fibromyalgia. Fibromyalgia is a chronic condition characterized by pain—in the muscles, the nerves, the joints—that affects the whole body. It is incurable, debilitating and of unknown origins. People with fibromyalgia have an abnormal sensitivity to touch in at least eleven out of eighteen trigger points all over the body. All eighteen trigger points on my body were active.
The nerves in my face sometimes made it painful to open my mouth or chew. So I murmured. When my joints ached, every head-to-toe movement became methodical as I walked and winced under my breath. Sometimes parts of my body would "wake up" and feel as if they'd been broken in several places. And rainy days sent my body into shutdown mode. I felt as if my body was powering down. First, the pain shot across my body, then my brain fogged up and everything slowed down. My movements became limited. My hip joint cracked and locked. And then one entire side of the body would go on "red alert"—the pain coursing from trigger points in the head and neck to points in the legs—before, finally, with all the nerves in my body overreacting, the other half of my body would be assaulted by a crescendo of pain.
"No! Please, don't touch me! No!" I started sobbing when a student approached me with open arms.
When I told my students about my diagnosis, some seemed relieved but others cried openly.
"What does this mean? Can they do anything for it? Will you get better?" asked Reggie, one of my favorite students, as he struggled to understand my mysterious condition. "Will you still be our teacher?"
"I don't know," I whispered. I slumped in a stool, grading papers with happy face stickers because it hurt to write, and wearing headphones because the noise of the classroom sent painful shivers through my body.
"Miss, can we hug you?" Reggie asked trembling, pushing his dreadlocks back from his face.
"But I can't be touched," I responded tearfully.
"Air hug, Miss! See?" Cordell, a shorter, more slight African-American student, said opening his arms in the air and then hugging them closely against his chest. "Air hug."
The other students nodded in agreement before each giving me an "air hug."
I had become "shomer negiah" with everyone. No one could touch me. Even the briefest impression of a scarf against my neck caused pain to course through nerves in my body.
Fibromyalgia made me obsessed with touch in a way that Judaism hadn't. I had to be careful walking through crowds so that other people's bodies wouldn't come in contact with mine. I would force myself to watch others touching: couples holding hands, mothers bending down to pick up their children, friends greeting each other with kisses on the cheek. In movies, I couldn't sway my eyes from even the most inconspicuous moments when one actor would grasp another's shoulder or forearm to emphasize a conversational point or to show affection.
And it was only then that I understood my best friend who had arrived from Israel only to "spurn" my hugs. He hadn't had to suffer from fibromyalgia to understand that touch was a dear gift. He had been fully aware, totally conscious of his body in a way that I hadn't. He had known the affect and the comfort that a simple hug could deliver, much more deeply than I had, I who had hugged everyone indiscriminately.
Three years later, I am learning to live with my diagnosis. When my friend Nataly frequently invites me for Shabbat meals, she often asks me to bring "nothing." She watches me like a hawk to make sure I'm not "overdoing it," something that all too often causes a "fibro flare-up."
"It's not that I don't like your cooking," she assures me on the phone. "I just want you to relax. Let me take care of everything."
My sister agrees with Nataly, "If you have the energy and you're feeling well, you should be doing something other than crippling yourself by cutting up fruit for a salad."
When my husband and I knock on the door, we hear Nataly's husband, Akiva yell, "The door's open." We laugh. But then we fiddle with the knob again only to find the door is still locked. Suddenly, it bursts open and Nataly is standing in the doorframe wearing one of her best Shabbat outfits. Overwhelmed by sudden emotion, I hug her.
"Whoa, hey," she says, noticeably startled but smiling.
I smile broadly, knowing that without words, I have transmitted exactly how happy I am to see her and just how much she has meant to me during these difficult years.
Touch became special, so heartrending and precious, when I could touch and be touched by so few. The moments when the pain was lessened or when I clenched my teeth to accept a hug, despite the pain, never passed without notice. Just as Judaism had taught me to pray before and after every morsel of food I ate, my body and mind seemed to stop and brace themselves to offer a silent prayer before and after every single time someone touched me.
These days, most of the people in my life have been trained to ask before they touch me. Even my husband asks for permission before bestowing a kiss or a hug. There are good days when he envelopes me in a hug that radiates warmth, not pain, all over my body before nestling in my toes. And there are bad days when he has forgotten to ask and I've yelped in response to a simple caress.
On those days when even my ears hurt, he asks me where it hurts.
"Everywhere!" I groan pitifully.
I break into a smile and I grant him permission to touch the very tip of my nose. And we are appreciative for such a little gift. Because we both know that there are no simple caresses.
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