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? 

“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)