The Joys of Shabbos

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Henny Kupferstein as a bride, fasting and praying before the ceremony, Feb 18, 1997

Imagine if this book was an inspirational book, full of sacred references. The commentaries would guide you to a holy place. You would credit their wisdom for the feelings you experience each weekend. What if this book is a cynical anthology of anecdotes. How I was possessed by the shabbos demons. How I was released and liberated to be the queen herself. Perhaps a collection of miles which I have trekked in my journey to come face to face with shabbos herself. I had some things to tell her. You didn’t know this would be a parody on The Joy of Sex classic, or the Kosher Sex handbook by Rabbi Shmuley Boteach. Yeah, nobody told me either.

When I finally confronted the shabbos queen, she was anguished. She expressed rage as though a betrayal of a fellow sister was the worst kind. Maybe like cheating with the neighbor’s spouse in the garage. Worse than calling God by His name. I tossed and shook, like a rabid dog frothing at the final frontier of razor sharp teeth. I was armed and loaded, ready to shoot her down. 

I shot in the dark, and saw the explosion of light around my shot. The halo made me remember the days when I first lit the shabbos candles as a newly minted married woman. I had just turned 19, and I told myself these were magical flames. I would light them so earnestly, each Friday night at sundown. I convinced myself that the kindling of the candle releases my prayer to god. The blessings were personal, written just for the married woman who lights the shabbos candles. It felt so intimate, so private that I bashedly covered my eyes in emotional prayer. 

Henny Kornbluh, a chassidic bride fasting and praying before the ceremony

Henny Kornbluh, a chassidic bride fasting and praying before the ceremony.

Nobody ever told me that the tradition was from medieval times, when couples fought over saving their candles for one meal a week. When candle fat was so scarce, that weeknight meals were pure misery. After a week of hard work in the market, at the silversmith, the cobbler and the butcher, everybody wants some comforting time with the loved ones. Without a candle or a hearty meal, it was merely an extension to the week. 

Friday night was the special time. It was a time for ambience, predetermined meals to express lavishness, and a time for hot food without the hassle of preparing it fresh. They never told me that enjoyment was derived from everyone eating together, instead of a spouse slaving in the kitchen. They never warned me that he would be expected to be served as a king, while he sat on his shabbos throne beating his fist on the mahogany table covered in a $1,200 Wall of China white cotton tablecloth.

To avoid infringing on the labor prohibitions, extra precautionary provisions were added. Everyone was encouraged to bathe specifically in time for candle lighting. The nicest clothes were donned for the evening. Cooked food was kept on a low fire to keep it heated until after the evening prayers were completed. If you had any pure white articles of clothing, you were encouraged to visibly don it. Women began to wear a frilly white apron reserved for the weekend. Those who wore kerchiefs reserved the white silky ones for shabbos. 

Nobody told me that he was waiting for the shabbos ambience to get into the mood. And by mood, I mean me. They didn’t warn me that his extretions would smell like a bleach spill on Friday night, but a sardine factory by Saturday afternoon. They didn’t tell me I’d be dribbling his stewing eggs in uncontrolled flows, making me feel as though a jellyfish crawled out of me every time I stood up or shifted my weight on the couch. I didn’t realize that most hygiene rituals would be prohibited, leaving me with an unrelenting compulsion to alter my body smell and disposition. I fantasized about the day when I would use a baby wipe, and clean up. I was delighted with the wicked thought that one day, I would accidentally open the hot water faucet in the bathroom sink. Anyone hearing from outside the door wouldn’t be able to ever know my secret. The anonymity of this dreadful sin had me tickled. I planned these elaborate ideas which empowered me, and helped me see my present through the future’s liberation. 

I also smelled of his body odor. It was a mixture of Marlboro, minty breath freshener, germy teeth plaque mixed with old cheese, and aqua net hairspray on his beard. I was dumb, dumb, dumb, when I surprised him with cologne for his 30th birthday. He doused himself so extensively that weekend, that I smelled of him, his deposits, and his cologne. The horror of this sensory violation can only be described as the dollar store lavender bathroom spray mixed with the smell of a giant poo. I thought of myself as a walking port-a-potty. I felt like the blue water, a vessel accepting everything and turning all of it into a mysterious disappearing reality. I was always shit sprayed on the walls, with pee splatter for extra embellishment. 

Six years into the marriage, I finally used my words to make him hurt as much as he hurt me. After about 14 minutes of humping a wall of dry ice, he walked himself back to his bed. I shouted after him, “don’t forget to flush!”. The purple circles on his cheeks spread to his ears, and he was steaming from his nostrils. Rather than his ear sirens going off with a shriek, he screamed through clenched teeth, “How can you even say such a thing?!!!”

Nobody told me that I could say such a thing. And that it would liberate me from the pits of my hell. That I would now have permission to cry, laugh, talk to myself, or anything, but he would still get his job done without disturbing my mind. Oh how wonderful those trips were. I would fly first-class to exotic islands with turquoise seas. The mineral baths and sauna were always so exciting. I saw them opening my pores, seeping into my skin, and nourishing me with hygiene and invisible endocrine stimulants. Those dreams took me so far, that I would ride the high from my travels for a day or two. Sometimes, I even needed a vacation from my vacation. Those vacations always had me squeaky clean, and my hygiene fantasies were very fulfilling.

I hated myself so much, that I couldn’t even bother taking off my expensive shabbos house robe for naps. After the shabbos morning meal, I would pass out from exhaustion. I often slept for 2-4 hours, and it was a major boost for the week. Something in me thought that going to bed in clothes would be a signal for how exhausted I am, and that I should be left alone. I was never warned that the image of a shabbos queen in traditional clothing would fulfill his Freudian appetite and the love for a matronly figure in his own bedroom. I stopped shaving my head the day after he put his hands under my turban, feeling my peach fuzz. I knew he thought about his mother in that moment, and I was determined to discontinue that fantasy. I will not be degraded into being thought of as sex idol for a practice that was designed to downgrade me to a disgusting beast like all the abused women. 

Prisoners were shaved in Auschwitz. I knew my hair would set me free. My dreams now had me walking down the main street with my hair blowing in the breeze. I saw the smooth thick waves bouncing on my shoulder, growing long way past my face to hide my double chin. It would be as long as I wanted, and I would no longer be forced by my mother to have short bangs. I knew I owned my hair now, and I used it to regain the power I needed to survive. 

I had no idea that he would like my hair. Now he started mocking my head coverings whenever he entered the bedroom. “Take off that corny thing on your head. It makes you look so ugly.” The children would barely be asleep, and I couldn’t have any of them walk in and see me without a headcovering. It never occurred to me that they would see way more disturbing things than a mother in a ponytail. 

Women who didn’t shave their heads made it very obvious. It was a status symbol, a sign that she was more “modern” than her neighbors with a naked skull. They usually pinned the hair up in the back. We saw the giant bump in her headwear. Over time, women with ponytails finally developed a new style of headcovering so they didn’t explode inside a turban. They began to wear snoods, and it was a very hot trend. This is because the snood is merely an oversized knitted hat with a tight band for the face. Women would put up the appearance that they are casually overworked, and the frumpy style was to have the snood accidentally show some hairline. Now those ladies were the real tramps. 

When my hair first started growing back, it was thick. It was almost 15 months with horrible migraines. The short pointy ends stood straight up and hit the turban like a tight squeeze to a mophead. The competition was fierce, and the turban always won. After 7 months, the hair finally began to bend to a side, and I was able to brush a side-part. It began to stay down for the first time. It felt so exciting to have this secret growing in the privacy of my own sleep. I finally grew my hair until I could gather into a ponytail close to two years later.

I worked myself up the status to have a conspicuous ponytail bump at the back of my wig. I personally hated those mushroom heads, and vowed to never be that woman. I wasn’t. I figured out a technique for tucking my hair up and held together with giant flat barrettes. The back of my wig was snug and revealing of my true head shape. Nobody would know unless they touched my wig in the back and felt clips behind the net. He hated those clips. He always asked me to take them down and shake my head back and forth. It made me dizzy and I felt like a cow shaking off her teats after a milking. 

He was told that Shabbos was his special time with his queen. Me me me, all about his ego and his power. With every flick of a match, I silently put myself into the flaming hole of my weekend. The smell of the sulfur was a sign of my consenting acquiescence. I got sucked into the vacuum of the wick catching the flame, and I melted into the halo over the candles. I remained dazed and frozen until the thaw of the havdala candle, signaling the end of the shabbos. The havdala candle was kept in the freezer to prevent rapid dripping during the havdala ritual. How I love putting the smelling candle with a freshly burnt wick into the inviting freezer. I imagine crawling into it together with the candle, having a dark cold, silent and insulated cocoon to defrost my rage. I preferred to die from lack of oxygen, than use my oxygen to kindle him. I needed a way out. I wanted my loins back. They never asked me before they made the rules. “Oh, the shabbos queen has arrived,” he said as I lit the candles for the last time with him breathing down my neck. I was 31.

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From Budapest to Auschwitz to Chassidic Valentines in Brooklyn- Tribute to my Maternal Grandmother Ima Bubbe

From Budapest to Auschwitz to Chassidic Valentines in Brooklyn – Tribute to my Maternal Grandmother Ima Bubbe

February 1926 – December 2018 #RIP 

Transcript:

My maternal grandmother, fondly referred to as Ima Bubbe, was born in Hungary before WWII. Although her birthday was February 10, we enjoyed humoring her with birthday presents on Valentine’s Day. Growing up in NYC, my family did not celebrate American legal or secular holidays. Valentine’s Day was a mere convenience, where we were able to find nice red and pink items on sale the day after. For many years, we all pranked my grandmother with new red underwear, because they were on sale, and hilarious to all of us. She always giggled heartily, but appreciated the 8-pack! 

Ima was a survivor. She outlived three husbands (Weiss, Oberlander, then Moskowitz). She spent most of her life walking on 3 bullets embedded in her feet at Auschwitz. She hobbled and wore special shoes on a large wedge. It looked like toddler booties with a wide front. She resisted a cane, and resisted a wheelchair. She always put a smile on first, and never allowed anyone to see her without her dentures, or without her wig. Lipstick and clip-on earrings were her friend. She smelled of Bengay and goulash, with a hint of Dollar-Store musk perfume, which made me cough.

Ima and I had a special relationship. I was the obnoxious relentless trouble maker, but also a wiseass. I learned quickly all matters that were of interest to me. Languages being one of them, I was the only grandchild to learn Hungarian by listening. How I made her laugh with my Hungarian wisecracks! The song  סְאָל אָ קָאקָאש מַאר as well as Mókuska, Mókuska, a children’s song about a squirrel, were my specialties. My mother, her siblings, and all the grandchildren, had a very specific job around Ima. We were required to help her by massaging her feet, knees, and shoulders. I was the only grandchild that she preferred, and called me גאלדענע הענטעלאך, העניקא פּעניקא! “goldene hentelech, Hennyka Pennyka,” translated to “Golden Hands, Henny Penny.” To date, my hands betray me due to dyspraxia, a neurological motor movement disorder. But my intuition and empathy allows me to provide comfort in ways that surpass the person’s capacity to indicate or request it. My grandmother recognized my gifts for energetic intuiting. She appreciated my wit, and humor. She liked my spunk and creativity, and she loved my style.

When she was dying in the hospital last year, my family forbade me from visiting. I was in New York at the time, and they threatened me in all kinds of ways. I begged to be on speaker phone, at minimum, just to sing for her in Hungarian one last time. The response was mainly, “no, it’s going to kill her!” She died the next day, almost 93 years old. I cannot forgive that she took my family’s position about my divorce, after herself having suffered a lifetime of abuse and oppression, and denied me 10 years of family time. 

I can work on forgiveness if there is more communication about her story. But I have been withheld all of her life details that my family did not want us to know, such as the secular lifestyle that she had in the first 10 years after WWII living in Hungary with her husband Imre Weiss. Even the circumstance of his sudden death, rendering my grandmother a widow with 3 children under the age of 6, was a family ‘mystery’ and blamed on “sick from the war”. She simply never shared photos of him. I found some of those photographs. There were no wigs, beards, yarmulkes, etc. My grandmother looked sexy, happy, and encouraged by how her life was rebuilding after the holocaust. 

Today, I reflect on the positive memories. The times that she shared freely with me how she whipped out all her magical Hungarian dishes. I am the grandchild who holds those magical memories and skillsets directly passed onto me with love. I am the grandchild that cries softly when an 8-pk of red panties are on sale today in the store. I am the woman who has her stamina, her humor, and her creativity. Together with my pragmatic/logical, non-love paternal lineage, I have become an unbreakable warrior, inoculated against trauma. There is nothing left that will break me or scare me into irrational coping. How wonderful that I can see my face in my grandmother’s, and remember that I have so much left to aspire to. RIP Ima Bubbe, on your 94th birthday.

Why I created #whinywednesday for my FaceBook followers

On Wednesday, August 21, 2019, I posted an invitation asking my FaceBook followers to post their crankiest issue of the day. The teaser introduced #whinywednesday hashtag was accompanied by a photograph of myself in a hospital setting. I replied to every comment, with a sarcastic twinge and dorky emojis and animated gifs to complete the mockery of the absurdity.

It’s #whinywednesday. Post your complaints below. I’m serious. I love being distracted 😀

Humor and sarcasm has always been my default perspective on life’s complexities. I live with genetic comorbidities known to cause complications in autistic people. As I started a new treatment this year, I found myself in the infusion clinic, surrounded by people receiving chemotherapy. The energy in the space was threatening the sanctity of my positive thoughts.

I fought back by posting a picture of my IV arm, and a goofy grin. The teaser offered an opportunity for anyone to make a laughing stock of life’s complexities, by reframing them as trivialities. The original premise was to showcase my attitude during a challenging moment, while inviting the observer to join me in silly play. I was not prepared for the awakening I experienced when reading about people’s daily grind.

Hey hey hey, it’s #whinywednesday today. So please share, what’s the crankiest ☔️ thing that happened to you today? For me, my mint plant 🥦 decided it no longer wants to live outside, so now I have green stuff in my kitchen. Okay, your turn 😀

One person shared that he just completed his oral defense for his dissertation proposal. When he got home to celebrate, he found that his brother had drank all of the scotch that he was saving for 20 years for this occasion. Others spoke about their hassle with paying their taxes, the struggle to buy printer ink at the Best-Buy, and the muscle pain of finishing physical therapy only to be followed by a gym workout.

Overall, this experiment is helping me be a better person to myself, and a more compassionate member of a community of support. Our shared interests seem to be aligned toward acceptance of autistic people, and a world that works together to create a safer space for people who are made to feel that their existence is a threat to the species. One week later, the commentators have thanked me for creating this space for safe whining. But have I created this, or have they made it what it has become? 

Popula FaceBook Posts, clickable directory

OMG I can’t believe I just read that about Henny Kupferstein

Summary of popular FaceBook post at http://www.facebook.com/HennyKupferstein

 

“Congratulations, you have a disease! Or an explanation for what is going on, and meeting published peer-reviewed diagnostic criteria for a mast cell activation syndrome.” I never thought I’d hear these words. Today is the day that my #MCAD was formally diagnosed by Dr. Lawrence Afrin, hematologist and #MCAS expert in New York.

“Congratulations, you have a disease! Or an explanation for what is going, and meeting published peer-reviewed diagnostic criteria for a mast cell activation syndrome.” I never thought …

 

HENNYK.COM
“Congratulations, you have a disease! Or an explanation for what is going, and meeting published peer-reviewed diagnostic criteria for a mast cell activation syndrome.” I never thought …
“Congratulations, you have a disease! Or an explanation for what is going, and meeting published peer-reviewed diagnostic criteria for a mast cell activation syndrome.” I never thought …

“Congratulations, you have a disease!” MCAD Diagnosis today

“Congratulations, you have a disease! Or an explanation for what is going on, and meeting published peer-reviewed diagnostic criteria for a mast cell activation syndrome.” I never thought I’d hear these words. Today is the day that my MCAD was formally diagnosed by Dr. Lawrence Afrin, hematologist and MCAS expert in New York.

Every single one of my labs came back normal, both blood and urine. There were elevated von willebrand factor, which only speaks to inflammation in my system, which I already knew. Otherwise, nothing would’ve been able to get me the clinical diagnosis. And then, the motherload: My scope from 2015 was restained and the mast cells were more than 4 times the normal range for at least 2 tissue samples, which is the clinical requirement for a diagnosis. I want to add that after that scope, the GI declared histological remission for my crohn’s!

Pictured is the pathology report from the 2015 tissue samples, with Dr. Afrin’s words:

  • Tissue sample one is the second part of the duodenum of the small intestines. Originally ‘Normal’, Afrin staining: up to 52 mast cells per high power field. Upper limit of normal is 20 (results more than double). Two mast cells seen lacks neoplasia “nothing suggestive of mastocytosis” abnormal based on the numbers, but consistent with mast cell activation.
  • Tissue sample Two & Three, stomach and esophagus all normal. Didn’t even do the standing, but that’s okay. Because slide 4:
  • Four – terminal ileum, the farthest up that the colonoscope can reach in the small intestines where it joins the large intestines. Original normal. More than 4x upper limit for normal, and not a single sign of mastocytosis.
  • 6-7-8-9, did not do staining, but there are 2 biopsies that show substantial increases in mast cells “I’m looking for two pieces of evidence for the diagnosis”.

Congratulations, you have a disease!

What does this mean? Find an h1/h2 antihistamine protocol that works for you. If one drug triggers a flare, don’t give up. Ask your pharmacist to help you with formulations until you know which excipedent causes you to flare. on the bright side, prognosis is normal lifespan, except the quality of life can be chronically miserable until relief is obtained. As a final note, Dr. Afrin noted that 85% of MCAD patients do not have elevated tryptase levels, as that is only a marker for mastocytosis, a very rare variation of MCAD.

Facts:

  • Children with mastocytosis have a tenfold autism prevalence. That single study has not replicated yet in MCAD because no pediatricians are  aware of MCAS or recognize or diagnosis.
  • Nearly 80% of patients with Ehlers Danlos Syndrome (EDS) have an MCAS comorbidity.
  • 85% of MCAd patients do not have elevated tryptase levels, the only test allergist know to use today.
Link for sharing publicly for awareness:

An Unorthodox Life: Radio interview with NPR KQED, April 25, 2017

This 30-minute episode aired through KQED to NPR two years in a row. Three years later, people still write to me about smilier stories and sharing good wishes.

Direct link: An Unorthodox Life: Radio interview with NPR KQED, April 25, 2017 (click the red play button)

Transcript

An Unorthodox Life

LISTEN

33 min

 (Deborah Svoboda/KQED)

Henny Kupferstein grew up in the Belz sect of ultra-orthodox, Hasidic Jews in Borough Park, Brooklyn. From early childhood, she felt like a misfit. After getting married to a virtual stranger at age 18, Henny began secretly rebelling against the confines of her sect. When she was 34, a startling diagnosis would lead her on a dramatic path away from the Belz and everyone she knew, including her four children.

You can read about Henny’s work with autistic kids and her book, Perfect Pitch in the Key of Autismon her website.

Music for this episode was composed by Nicholas DePrey, Chris Colin, Seth Samuel, and Henny Kupferstein.

Henny Kupferstein, age 18, with her paternal grandparents on her engagement day.
Henny Kupferstein, age 18, with her paternal grandparents on the day of her engagement. (Henny Kupferstein/KQED)
Henny Kupferstein concealed by her veil on her wedding day.
Henny Kupferstein concealed by her veil on her wedding day. (Henny Kupferstein/KQED)
Henny and her husband on their wedding day.
Henny and her husband on their wedding day. (Henny Kupferstein/KQED)
Henny Kupferstein and her four children in front of the New York Aquarium seven years ago, on the last day that she saw them. Her children were 12, 10, 5 and 15 months at the time.
Henny Kupferstein and her four children in front of the New York Aquarium seven years ago, on the last day that she saw them. Her children were 12, 10, 5 and 15 months at the time. (Henny Kupferstein/KQED)
Henny Kupferstein holding a picture of her and her four children in front of the New York Aquarium on the last day she saw them. (Deborah Svoboda/KQED)