chronic pain/fibromyalgia · jews of color · Jews/Jewish/Judaism/Orthodox Judaism

To Those Who Judge Unfavorably…I am NOT a Piñata!

This Rosh Hashanah, I was accused of un-Rebbetzin-like behavior by a stranger who didn’t even know me, who didn’t even talk to me, at a local minyan I attended. I don’t know this person. I don’t know this person’s name or anything about him or her other than the casually uttered harsh words this person said to my family members who passed it on to my husband and no one wanted to share them with me because they knew how hurtful they would be.

This is not the first time this has happened to me in my six years of battling chronic illness, each year different than the next. Once, a congregant (never a rabbi) asked me to leave services or stand outside alone because my stretching was embarrassing. This congregant cornered me in the lobby aggressively and while I cried screamed at me as I crouched smaller and smaller. Yes, as a disabled person with both visible and invisible disabilities, I have more than once (including by this person who accused me of un-Rebbetzin-like behavior) been asked to LEAVE or MOVE or HIDE somewhere where I would not be seen or heard or be able to participate in my own way with the congregation. Another year, another congregant verbally abused me as I stretched in my seat making the smallest of movements ensuring I did not violate her personal space nor was I disruptive. I even explained my disability. The rabbi who knew of my condition pulled her aside later as did other congregants because everyone but her could tell I was in abominable pain. Both times, these situations happened during the High Holidays, the most holiest time of the Jewish year. That is what hurts the most, perhaps.

This is the time of year when we should be ready to welcome every Jew at our door, no matter their skin color, their manner of dress, their background or affiliation, to pray with us. With no judgment. The most important judgment at this time of year is, as always, G-d’s and G-d’s alone who knows all and sees all. And yet, already Sukkot is upon us and I have received letters, Tweets and emails around the world from Jews who were turned away from services, who were accosted like strangers, who were interrogated because of their sex, skin color, manner of dress, background and affiliation at High Holiday Services. I have had these experiences myself but I thought this year was different. This year I wouldn’t be pulled aside or turned away from High Holiday services just based on my looks. They wouldn’t look at me with a question in their eyes when I uttered my name.

I was so happy this year that I could walk to services. I meant to attend Aish but I ended up at a small, local minyan where I felt my disability would be less problematic if not totally unnoticeable. Our local minyan was held in a lovely back house that is used as a school room for home schoolers during the week but I could not sit inside, instead had to sit in an uncomfortable wooden chair on the deck, because there was pet dander in the back house (yes, despite removing the pet, it still stays for over six months once a pet is removed) and sitting inside would risk putting me in the hospital for asthma. Still, I happily, though uncomfortably, sat on the deck with the children and tried to be as inconspicuous as possible.

STILL, I was so happy that I could walk uphill for twenty minutes even though at times, it felt like I was walking twenty miles, without suffering severe consequences much later. I was happy and I felt successful and proud of myself. I was so happy not to have spent Rosh Hashanah in bed or the hospital, alone and cut off from my people because of circumstances out of my control. Now, I could move onto to Yom Kippur, the day I have almost always spent in bed since becoming ill because fasting wears down my disabilites like nothing else, and also have hope that I could make an appearance then, too.

Last year, I needed a cane to help me walk. Few saw it because I hid it. Often, I went without it from shame or to spare others shame. I still am not allowed to walk up and down the simplest flight of stairs. My joint condition will forever prevent that. When I do use stairs, there are instant consequences. Earlier this year, I spent every week in physical therapy to make my hips and knees and legs cooperate with each other so I could walk properly without extreme pain. I spent every week at acupuncture and at expensive facial TMJ/migraine therapy with one of the best massage therapists and dentists in the world so I could smile and chew and talk on the phone and hopefully, someday cover my hair again!

Last year, I went to Rosh Hashana services but I felt so sick I wanted to climb out of my body because the pain was so, so fierce. I was actually supposed to be in the hospital that day but I told the doctor I refused to start the Jewish new year that way even if it put me in harm’s way. Even if an ambulance had to take me from services. I am nothing if not stubborn sometimes. No, I would go to services. By that Yom Kippur, I was bedridden but I was glad of my achievement on Rosh Hashanah even if I had to stretch, fidget and move constantly, which keeps the blood flowing and joints moving to keep most of the pain at bay. No one spoke to me or wished me a good yontiff or asked me if I was okay though I obviously wasn’t. Mostly, they gawked and stared and whispered about the young strange girl all the way in the back even as they saw me the trouble I had getting from my seat to the bathroom and back or grabbing a drink or just trying to stand up after a long time sitting down, which makes my joints lock up and stiffen.

So I would like to respond to the accusation here about un-Rebbetzin-like behavior. Most of my friends are Rebbetzins or rabbi’s wives as others would rather be called. We heartily and selflessly support our rabbi husbands, usually behind the scenes without pay, without appreciation, without thanks. But we do what we do because we love G-d and Judaism, we love their husbands and we love the Jewish people no matter how many times and how many stories we have of being accused and accosted by congregants who had certain expectations we they did not meet as rabbi’s wives or that felt our dear children didn’t meet the expectations as the rabbi’s children. Too often, people forget that while the rabbi signed up for this, his wife and children did not and even when we did, people forget that the rabbi and his family are people with feelings who make mistakes like anyone. We are people, not piñatas and sticks and stones DO break our bones.

So, here is my response as a rabbi’s wife but especially as someone who struggles with an invisible, sometimes painfully visible, chronic incurable illness:

Just so you know…. Praying is extremely painful for me physically but also emotionally because it has always been my primary way of connecting with G-d and still is. But now, there are so many simple things people take for granted when they attend services that I cannot do without severe consequences.

Appreciate if you can stand and hold a book at the same time. Appreciate if you can hold one in your hands and sit. Appreciate if you can look down at the book without your neck and back screaming from agony. Appreciate if you can murmur the words painlessly without incredible facial pain and migraines. Appreciate that you can survive a whole service without needing to sleep for hours the next day. Appreciate being able to say all the prayers every time or having the choice not to do so. Appreciate being able to wear a kippah or a wig or any kind of headcovering while you do this without the nerves dancing across your skull as if they are on fire. Appreciate if you can do all this without excruciating pain crawling all across your body and breaking your mind, your concentration over and over again until you must either stop or risk openly sobbing. Appreciate if you can all this without severe pain threatening to break your spirit.

Appreciate that you can do all this simultaneously AND still find time to gossip, to speak lashon hara, about the visibly or invisibly disabled person next to you who does not appreciate that you can do all of the above and STILL gossip about them.

I am good with G-d. As I told Patrick Aleph when he interviewed me for the G-d project, G-d has always been my best friend and sadly, only parent. Sometimes, the only place I could turn to in the roughest times was G-d. Sadly, the Jewish community too often still makes this the case when they feel I should hide my disability or not be present at all. When they feel my husband can’t do his job because his wife is disabled or that I do not support him in so many ways despite my disability. When they tell my husband, “I couldn’t be married to someone like that. G-d!” When they remind me, I am SO lucky anyone married me.

But I am also good with my rabbis also and my close friends and family and my husband who I have already talked to extensively about how my disability affects my communal and public Jewish life. The blessed rabbis have said that if ALL I can do is come to shul and sit there in silence when I can’t pray from the pain, then I should do so. If all I can do is can come to shul and sit there and alternately reading the siddur, a book or the bulletin when I can’t concentrate from the pain and I develop “fibro fog” or pain-induced ADD, so be it. If I find myself listlessly turning the pages in the siddur, unable to find my way because of the pain, I’m allowed to sit there quietly doing something else that disrupts no one else.

If I can come to shul when I can’t stand properly, barely walk, talk and listen to others daven while they casually, thoughtlessly murmur half-hearted prayers in-between judging stares, glances, glares thrown at me unfairly because of all the things they don’t know about me and why I cannot do what they can physically do so easily without a second thought. Oh, how we envy the way you so gracefully walk and stand for the Amidah while the rest of us, the sick and the elderly, have no choice but to sit down. But if we’re sick and young, we have to sit down while being stared and being maligned verbally by people who call themselves friends, family or fellow G-d-fearing Jews who cannot accept that there are many of us worldwide, Jewish and not, who are young and sick. And whether we look sick or not that day, we don’t have to hide because you’re not strong enough to look at us or to beat back your yetzer hara.

I prayed as much as kavannah as I could pray this Rosh Hashanah after my sluggish, difficult uphill walk and when I could do no more without aggravating my pain so much that I would not be able to walk home, I “read” a book to help me refocus away from the pain (distraction therapy) even if it meant that I was reading and rereading the same funny page over again while the pain washed over me in full force and tears came to my eyes. Even if it meant gritting my teeth when people talked to me because my whole face hurt and I had withdrawn to the side because I couldn’t do or take much more. Even if it meant that I had to sit there and defend my Judaism to people who interrogated me about my “curious” background while I tried to cope with the pain. Even if it meant that I didn’t have the strength to get up and walk away when the children made loud painful, banging and yelling noises that thankfully, I had prepared for by packing my earplugs and a book to help with the pain. Especially since I knew I had nowhere else to go but sit with the women and children out on a deck,  the same place where I had davened quietly, NOT inside the house or even the building where the minyan was held because of my animal allergies.

All I could think about was that I could hear, whether standing or sitting up, the beautiful melody of the shofar along with my fellow Jews this year and that made me luckier than a lot of friends I know. And I hoped that somewhere in heaven, my Sephardic maternal great-great-grandmother who left her Jewish life in Turkey for reasons unknown is proud of her great-great-granddaughter who has brought Jewish life back into our family.

So, why did you have the time to think about me and utter harsh words and judge me unfavorably without knowing any of this? I didn’t have time to think about you.

Health Update:

I am working hard to get better. I know I still owe you a post about The Conversation 2011 Jewish Week funded conference I attended with 50+ other beautiful Jewish people in Baltimore last month. I am always stunned that as a former Catholic, the community has accepted my voice as a Jew of color, as a convert, as a Jew with disabilties and a still freshly minted Rebbetzin-in-training. It is always great to represent these minorities within the minority even as I always explain that our situations are not all the same despite what connects us.

I am much, much better than where I was a year ago though still even heavier (but not pregnant!) and I hope to be even better a year from now. This year, I hope to participate even more in my wonderful new Los Angeles Jewish community as my husband teaches anywhere and everywhere around the community. I appreciate all your prayers and wonderful emails. I appreciate the way you share your intimate thoughts and lives with me via email and allow me to help you Jewishly by answering your questions and connecting you to other Jews in the community who would love to welcome you no matter where you are Jewishly.

NOTE: As I reiterate numerous times whenever I post about my health, please, PLEASE subvert any desire to respond to this post with a suggestion of “things I should try” for my health. I will ignore and delete any such comments whether they are posted here or emailed to me directly. If you are confused as to why, click on the “chronic pain/fibromyalgia” tag and read ALL of the previous posts. I get many of these kinds of emails from both fans, friends and family but believe me, I am under some of the best care available and I have heard all of your suggestions numerous times before to the point of exhaustion and irritation. My Los Angeles doctors are spectacular people on the cutting edge of treatment for my conditions and I only discuss my treatment with them and my husband.

Now, I have to finish cooking and hanging our male and female piñata in our sukkah!

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