In Spite of Challenges, I Choose to Be Happy and Live a Full Life

Despite a difficult illness, Elchonon Hellinger refuses to be a victim or take it easy. Instead, he forges a way forward, rejoicing those around him with his sense of humor and expertise in fine wines providing many with top selections to enhance their special occasions.

By Elchonon Hellinger – as told to Devorie KreimanAmi Magazine

The first time I tasted wine was at the Lubavitcher Rebbes’s farbrengengathering. I was three years old. My father gave me a cup with a dot of wine and said, “Hold it up. When you see the Rebbe nodding at you, say l’chayim and drink it.” The wine was sticky and too sweet.

I was born in 1985, a healthy baby, the second child in a family of ten children ka”h. When I was a toddler, my parents noticed that I wasn’t responding well to sounds. The doctor tested my hearing and discovered that I could only hear from one ear because I had a vestibular schwannoma—a tumor on the vestibular nerve that affects balance and on the auditory nerve, also known as the cochlear nerve, which affects hearing.

I was three years old when I had my first of what would be 36 surgeries…

My parents made the rounds from doctor to doctor. One problem would be corrected and another would rear up. When I was four years old, I was diagnosed with neurofibromatosis type two, NF2, a rare autosomal dominant disorder. NF2 is characterized by the development of multiple tumors, usually benign, in the nervous system including the brain, spinal cord, and nerves.

And so began the long journey.

To date, I’ve had hundreds of tumors in my body. I get four sets of MRIs every year to monitor my tumors. The doctors don’t remove every tumor. Only the ones that interfere with my bodily functions. If they’re able to…

When I was five years old, my parents brought me to The House Institute in Los Angeles, a world-famous center for ear and neurological disorders, to remove a tumor in my ear. The surgeon cut into my facial and auditory nerves. He also cut the vestibular nerve on the right side of my face—which affected my ability to keep my balance.

A year later, doctors removed a tumor from the bottom of my spine—which damaged my right leg. The muscles didn’t develop well, and, to this day, one leg is shorter than the other, and I wear a brace to support it. I had a hard time riding a bike, but I was determined to do what the other kids were doing. And, sometimes, I did it better than they did.

In 1990, our family moved to Florida. I was an outgoing kid and had a lot of friends. I found learning easy and was skipped from Third Grade to Fifth Grade. The yeshiva I went to had secular studies in the afternoon, but I only attended in the mornings. I walked home every day with another boy and learned limudei kodesh with a tutor.  When I was eight years old, I finished Masechta Makkos with Rashi and Tosfos.

At recess, I had a hard time keeping up when the other boys ran and played—because my foot dragged. My friends were used to me, and I felt like I belonged. Until I turned seven, and went to camp for the first time with a different set of boys. The lions den. That’s when I understood that others might reject me because of my deformities—without bothering to get to know me.

At one point, my family struggled with parnassah. I have a painful memory of being called out of class in elementary school and sitting in the lobby waiting for my parents to pick me up. I was told by the school staff that I was being sent home because my parents had fallen behind in their tuition payments. I stayed home for a few weeks. And I never went back to that school. It happened a long time ago, but, as an adult, I still think about it sometimes. I understand that the yeshiva was under extreme pressure to manage their finances and keep their doors open, but I can’t help wondering if making an innocent child sit out in shame was their only option.

My father decided to open his own school— a small cheder inside the Kerestirer Shtibel. I learned limudei kodesh in Yiddish all day. Our cheder was set up as a co-op. We had six students. The fathers took turns teaching, and the mothers watched us during recess. I thrived in that heimish environment and remained in the cheder until I entered high school.

A few Holocaust survivors davened in the Kerestirer Shtibel. One man, whom we called “the kavana man,” davened for hours—his tallis wet and his hands stretched out. I found out that he’d been in the the gas chambers with the doors closed, fate sealed, and he’d said, “Hashem, if You take me out of here, I will daven all of my life.” At the last minute, a German officer came up to the gas chambers and said, “I need workers.” This man was pulled out. To live. To daven.

I met many choshover Rebbes who came to our little shtiebel during the winters of my childhood. Among them, the Kerestirer Rebbe, the Satmar Rebbe, and the Bobover Rebbe—who traveled with a small sefer Torah. I watched how slowly the Bobover Rebbe davened Shemoneh Esreh. Once, he farherred me on mishnayis, and afterwards he bentched me.

One day, during recess, I went into the shtiebel to get a cup of water. I saw a chassidishe man sitting on a small bench by the mizrach wall. His face was red and streaked with tears. He looked like he was in another world. I asked, “Who is he?” They told me that he’s the Kalover Rebbe and that he’d been tortured in the Holocaust.

I went to every tisch. I thought about what these tzaddikim had gone through during the war. I heard them singing, Gam ki Eilich b’gei Tzalmaves. These encounters made a lasting impression on me and gave me strength to endure my medical challenges.

As I got older, more tumors grew. One, on my right cheek, was very large and I had to have surgery to remove it. Another tumor grew in my ear and left me hearing impaired.

When I was 11 years old, I had tumors wrapped around my spinal cord. The surgeon told me, “It will be a serious surgery. I don’t know if I can remove all of it.” I was a spunky kid. I said, “If you can’t, then how about sending me to the doctor who taught you?” I was actually onto something. He sent us to Beth Israel Hospital, to Dr. Fred Epstien, the world-famous pediatric neurosurgeon credited with the development of pioneering neurosurgical techniques.

Dr. Epstien was a real mentch who related well to children. He told me, “I can take the tumor out, but there’s a 5% chance that you’ll be paralyzed afterwards.”

I was hospitalized for ten days after that surgery. During my recovery, Uncle Moishy was in the hospital visiting another patient, and he stopped by my room as well.

The surgery was successful, Boruch Hashem, but I lost my coordinated movement in my right hand and became a leftie. Since then, I do everything with my left hand except for writing; my brain refuses to write with my left hand.

Dr. Epstien’s office housed a small baseball museum with baseballs signed by famous players such as Mickey Mantle and Babe Ruth, and he welcomed his patients to stop by whenever they wanted to. For a preteen boy, this was exciting stuff!

 One of Dr. Epstien quotes is, “The question, ‘Why do children suffer?’ has no answer, unless it’s simply, ‘To break our hearts.’ Once our hearts get broken, they never fully heal. They always ache. But perhaps a broken heart is a more loving instrument. Perhaps only after our hearts have cracked wide open, have finally and totally unclenched, can we truly know love without boundaries.”

I live with pain. That’s a given. But I made a decision, many years ago, that it’s not worth focusing on the hardship. For example, when I speak about Dr. Epstien, instead of bringing up the harrowing surgery and recovery, I’d rather speak about the baseballs he kept in his office.

I traveled to New York for high school. I went from learning in a class of six students to a class of 32. I was lost and lonely. The cold weather was also a shock. I felt tired on many days and, for the first time in my life, I had trouble keeping up with my studies. Still, I felt Hashem guiding me. Once, on Friday, when I went to Washington Square Park in Manhattan to put on tefillin on Jews, I met Matt, a secular student at NYU. I put tefillin on Matt and invited him to the pre-Purim dancing at our yeshiva on Thursday night. He came. I invited him for Shabbos. We talked, and I invited him again. Long story short… Matt is now the bearded and black-hatted director of Torah Ohr in North Miami Beach.

I was an enterprising teenager. I sold seforim on eBay and took a job managing J-2 Pizza in Boro Park.

I was passionate about helping the Yidden in Eretz Yisroel. I set up a table outside a store and collected a few thousand shekalim to send to organizations such as a group that trains dogs to protect outposts in Yehudah and Shomron. They use Belgian malinois and labradors. I like animals and was fascinated by the work this organization does.

The Lubavitcher Rebbe spoke often about the importance of shelimus ha-aretz. After the Oslo accords were signed, my father sent me and my siblings out to distribute stickers that read: The land of Israel, G-d’s gift for the Jews.” He was very outspoken, and he taught us to be.

I had ringing in my ears so my father arranged for me to see an ENT in Queens. The ENT was so busy that his patients waited in his packed office for many hours—often late into the night. He examined me at 2:00 am, checked my tumors, and told me that they were growing inside the nerves and stretching the nerve fibers so they were unable to function. I’d been deaf in my right ear since I was a baby, but this was my left ear…  The doctor was unable to remove the tumor without damaging the nerve fibers. He put me on prednisone, a steroid that left me hungry all the time. My weight ballooned.

When I was 17, I went to Israel and volunteered at the kennel in K’far Tapuach where the dogs are trained to be protectors. I took the dogs for walks and helped take care of them.

I stayed in Israel for five years and started a business selling computers and computer accessories online. I worked from Israel, but the products I sold were drop-shipped in the US.

In Israel, I was introduced to fine wines. I visited wineries in Yehuda and Shomron. The production of wine, particularly in Israel, brought to life the words of the Navi, Yirmiyahu, “Od titee keramim beharei Shomron.” You will, yet again, plant vineyards in the hills of Shomron.

I love nature and the smell of plants. Have you ever paid attention to the smell of… say… eucalyptus? And I loved the agricultural aspects of winemaking. The fruits. The smells. The exploration. I started to become a wine “meivin.”

It was an exciting time in my life. On the sixth day of Sukkos, when the usphizin is Yosef , I joined a group pf Breslover chassidim on a trip to kever Yosef in Shechem. We rode laying flat on the back of a bulletproof pickup truck with the cover pulled over us—because the back of the truck wasn’t bulletproof. We davened Shacharis at the kever of Yosef. Reb Mordechai Eliyahu was in our minyan. During Hallel, he lent me his lulav and esrog.

My tumors grew back, and I became completely deaf. Twice, when I was in Tapuach, I was nearly shot by soldiers because they gave me orders and I didn’t hear them.

In the days leading up to the disastrous forced evacuation of Gush Katif in 2005, my friends and I did everything in our power to prevent the disengagement. We protested. We begged, “Don’t give away our land.” We blocked roads. There were calls for a national referendum and we believed the nation would see the danger and the disengagement would be called off.

There was a hotel, Malon Dakalim in Gush Katif that had been abandoned because of the intifada, and gutted. A group of us—about 50 men, women, and children— moved in. We helped bring supplies to the people of Gush Katif. I had many friends there. I became close with Boruch Marzel and his kids. My downstairs neighbor was Itamar ben Gvir and his wife. Rabbi Danny Cohen from Hebron joined us for a while.

 Malon Dakalim was on the beach and had a gorgeous view. I collected seashells and sand and took a lot of photos. Laying claim. This land is ours! The hotel had no power and no hot water. We got by. We set up a communal kitchen and hooked up to the street lights at night for power to run fans in the summer heat. I was even able to use a modem and keep my business going.

A family from Brooklyn whom I knew donated a sefer Torah to a community in Gush Katif. I heard that Dov Hikind was going on a chizzuk trip to Gush Katif, and I asked him to bring it with him from the US. He did. Today, that Torah is in the Mitteler Rebbe’s (Chabad) shul in Hebron.

I stayed in Gush Katif for six months. One night, some of the guys played a game of basketball. Someone suggested a second game, but a few of the guys said they were tired so they all ended up going inside. Twenty minutes later, a rocket from another area of Gaza landed in the basketball court.

We hoped we’d be able to stand our ground in Malon Dakalim, but right before the expulsion, the government sent 2,000 anti-riot police officers to remove us. They confused me with someone else—for whom they had an arrest warrant. I tried to tell them who I was, but they didn’t believe me. I kept repeating, “Ani cheresh. Ani lo shomea.” A friend of mine went to my apartment in Jerusalem and faxed a copy of my passport to the police, and after a few hours they released me. In the chaos, I lost my duffel bag with all my stuff.

I wasn’t allowed back into Gush Katif, so I hid on a bus among a group of tourists and entered that way. I was frustrated by the situation. Even before the disengagement, missiles were hitting S’derot. I remember people warning, “We can’t leave the Philadelphi Corridor. Israel must hold onto it for security.”

On Tisha B’Av, 2005, we were in Gush Katif with our doors locked against the soldiers. We managed to hold them off for 16 hours. Until they forced us out. We left holding our Sefer Torah. We went back to Jerusalem. The next week, we tried to make our way back on foot. We walked for hours, from Yitzhar to Chomesh—more than 30 kilometers. I was fatigued and sick. We ran into a group of soldiers. They gave us some tablets and said, “Listen. You’re not going to make it. We don’t want to chase you.”

We turned back.

Something broke in me, in all of Am Yisroel, that summer. I was 20 years old. I’d fought hard. It was a crushing disappointment.

And my health was failing. I had a series of six surgeries on my face to remove tumors. My facial nerves were pushed down during surgery, and, as a result, my cheek drooped.The doctors pulled a nerve from my leg and tried to correct the droop. It didn’t work. I was conscious of how I looked and wanted it corrected. They tried a graft. My body rejected it. Finally, a surgeon did a corrective surgery to hold my check in place. The hardest part is that the tumors that were removed grew back again.

In 2006, when I was 21 years old, my doctor recommended an auditory brainstem implant, ABI, to restore hearing in one ear. I couldn’t have a cochlear implant because the tumor had destroyed my cochlear.  The next option, ABI, is more invasive. It bypasses the cochlear nerve— the bridge between the inner ear and the brain through which sound travels—and stimulates the brainstem directly.

Before the surgery, the neurosurgeon and the audiologist checked to make sure I understood the odds.  “There’s a 10% chance that it won’t work.”

I said, “When I’m in shul on Rosh Hashana I want to hear tekias shofar. Let’s do this.”

When I woke up from that surgery, I couldn’t see straight because of all the medications. My mother called a man from Chai Lifeline to put tefillin on with me. I was completely deaf because the device wasn’t turned on until three months post-op. The hospital staff put a board in front of my face for communication.

After a few days, I was released from the hospital. The auditory implant was attached to a pouch on my body, connected by a cable to my ear, and held in place by a sticker on my head. It was expensive—because insurance didn’t cover many of the needed accessories. I had to stock up on small batteries. The good news is that over the years they’ve upgraded hearing devices. Now, mine is smaller and the entire device sits neatly top of my ear, and it’s  powered by rechargeable batteries.

Three months after my auditory device was implanted, I went back to the doctor to have it turned on. At first, I heard a lot of static, like the sound of a radio when it’s tuned to a nonworking channel.

It was miraculous to hear again. And, sometimes, it was difficult. I’d gotten used to silence. The world can be very noisy. At times, I was tempted to withdraw, to turn it off and type my communications or spell them out as I’d been doing when I was deaf. My friends wouldn’t allow me to do that. They insisted, “We won’t sign or type. If you want to have a conversation, turn on your hearing device.” I had no choice. I got used to it. Now, I can make a phone call and listen to music. I don’t even tell people who don’t know me that I’m hearing impaired.

When they removed the tumor on my auditory nerve, the doctors cut the vestibular nerve on my left side. Without vestibular nerves, my balance is off. I have a hard time using escalators. I can run down a flight of stairs when there’s a railing—and often I won’t even hold onto the railing—but without it, going down stairs is terrifying. When I’m on an airplane, I can’t adjust my body when the pilot makes a turn or flies through turbulence. I’m scared to fly, but I do it anyway. Often. Because it’s necessary for my work.

Fun fact: I’m one of the few people in the world who can ride a bike without vestibular nerves. I’ve participated in some research studies related to NF2, and was part of a NASA-funded study on vestibular nerves. I sat in a chair that moved in all directions—up, down, right, left, forward, and backwards—and, with each movement I pressed a button to let the researchers know what direction I was moving in. The study compared people with and without vestibular nerves to try to understand what causes the loss of perception

When I was very young, my parents taught me that going through a painful experience can open a person to asking: What good new thing might happen?

For years, I dreamed of bringing the wines of Eretz Yisroel to the US to  support the wine industry there—especially in Yehudah and Shomron. When I was in Los Angeles for a tuneup at the House Institute, I spent Shabbos with a friend, and he told me about a local wine tasting. I went to the tasting, and I loved the wine. And the experience. I realized I wanted to know more and do more with wine, so I started a new business distributing wines.

I moved to Florida. In the world of wine, it was an untapped market and I became the biggest seller of kosher wine in South Florida. I keep a stock of more than 500 labels in an insulated temperature controlled warehouse and sell directly to customers, mostly by word of mouth. I sell wine through my website as well. I’ve been told that I built the wine culture in South Florida.

In the really busy times, I hire support staff, but a lot of the time, it’s just me running the business on my own. Actually, it’s more than a business. It’s a way to make a difference. People text me, often,  asking for a bottle of a particular wine, or for advice. I don’t have any formal training and yet I know my wines well enough to give advice with confidence.

Sometimes people want to mark an important occasion and will splurge on expensive wine from a boutique winery. Other times, they’ll say something like, “Please recommend a nice mevushal for $15.” I’m happy to guide them at every level, to make sure they’re getting what they really want. I also provide wine for simchas. Often, I tell my customers that they need less than they think they need. I encourage them to consider quality price ratio, QPR— to measure the return on their investment by what they would appreciate. I help them understand their palate and keep track of what people tried and what they liked, so when they call again, I know where to start.

I run wine-tasting events and founded a Rosh Chodesh club—every member brings a bottle of wine to our get-togethers where we share divrei Torah. I host events for wineries and run wine dinners because I’m skilled at pairing wine with food.

It’s joyous work. 

Warren Buffet said, “Take the job that you would take if you didn’t need the job.” I love the wine business. It’s great to wake up every morning and embrace the day.

I also enjoy coffee—so my days are a cross from coffee to wine, from the hours when it’s okay to drink one and when it’s time to stop and switch to the other. Because we all need simchas hachayim. Even when life is difficult. And it is. A lot of the time…

In 2015, when I was 30 years old, I developed Band Keratopathy, a corneal disease that causes calcium deposits to build up in the cornea. My right eye was atrophied, and I was in a lot of pain. I’d been wearing prescription sunglasses all day because the light was too strong for me. I’d had surgery on my eye, but the problem returned and the doctor recommended that we remove my eye. I’d never been able to see from my right eye, so it didn’t change my vision. They did an enucleation which is a removal of the eye, and a coral implant using porous material derived from reef-building coral and they implanted a prosthetic eye. 

I’m almost 40. I had my midlife crisis when I was 8 or 9 years old. I remember feeling so frustrated: Why do I have to deal with a body like this? There was a sense of dread, that if anything can go wrong in my body, it will… but I don’t see life that way anymore. Even with each subsequent tumor and surgery and the things that go wrong afterward, and the OT and PT that I have to endure to regain ease of movement, and the constant stretch and core work because of all the surgeries…  even with all that, I refuse to become bitter.

At times, the intensity of my medical situation overwhelms me and it feels like too much. I fall. I climb back up. My parents and siblings have so much love and patience. They can’t alleviate my suffering or remove my physical challenges, but they are in this with me, feeling my pain, nurturing my hope… They’ve also been on top of my care, working hard to ensure I have top-quality doctors. My bubby, who is Ka”h 99 years old, is my biggest fan. We go out to eat together. And my mother is my warrior. Always!

As a family, we’re stronger and better because of my NF2. I have more than 20 nieces and  nephews whom I spoil. I remember all their birthdays. And I surround myself with friends who are supportive, but who don’t hesitate to criticize me if necessary and to encourage me as needed.

Sometimes people suggest shidduchim for me, which I appreciate. The issue that I have is that their starting point in coming up with a match is that I have a problem and so does she. I get it. I have health problems that are not easily ignored. But why does that have to be the first—and sometimes the only— commonality?  I have problems and she has problems and thats the main reason we should date?

NF2 hasn’t stopped me from doing what I love. I’ve been to wineries all over Europe, Israel and the US, constantly searching for what’s new and for good deals. I have a great sense of humor. I enjoy color and art and have visited museums all over the world. And I’m a voracious reader. I’m grateful to be able to develop my interests, connect with others, and uplift people. I can’t think of anything I’ve wanted to accomplish and haven’t been able to because of my medical condition.

 There are support groups for people who have NF2. At one point in my life, I was very active in that community, but I found it depressing and I pulled out. Because of my complex medical needs, I’ve met many, many doctors. Some have become friends. When people have difficulty getting through to a doctor or when they need advice or referrals, I use my connections to help out. I also volunteer at Healing Hearts, an organization that provides support and hospitality to patients in South Florida.

Boruch Hashem, my health has stabilized. After every surgery, I can’t lift anything and the recovery tries my patience, but, with Hashem’s help, I heal. I’m completely independent. I live on my own and drive a car. I’m able to drive even though I only have vision in one eye because I’ve been seeing out of one eye all my life, and my car has safety features such as sensors for blind spot and lane changes.

Here I am, with my one working eye and ear. Like the Country Yossi song, It was a one eyed, one horned, flyinlukshin kugel eater…What a sight to see!  Part of my face droops and one foot drags behind when I walk. I’ve thought about corrective surgery for my face and my foot, but, at a certain point, I have to call it quits. It’s just a body. What am I going to do?

We become who we are by the choices we make.

Who am I? I am Elchonon. Yid. Loving son, brother, and uncle. Friend. Passionate activist. Wine expert. Intellectual. Business owner. In a body that grows tumors. With strong survival skills. I am Elchonon. And I choose to be happy.

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Discussion

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  1. Elchonon שיחי׳
    I have enjoyed the few quality talks that we have had. You are a kind, wise and funny man who makes others just feel relaxed.
    You were specifically helpful to me sharing your experiences and offering guidance for me regarding my acoustic neuroma that has left me deaf in my right ear.
    Thank you so much for sharing your inspirational self with all of us in this well written article.
    I heard that the Friediker Rebbe said, “There is an expression in the world, ‘שאל למי שניסע בדבר ויתן לך בחינם מה שקנה בדמים יקרים׳״
    “Ask a person who has been through the tests and he will give you for free that which he acquired with great ‘expense’”
    May Hashem bless you to continue in your עבודת הקודש mechayil el chayil mitoch harchavah bgashmiyus vruchniyus gam yachad non-stop until MOSHIACH NOW!
    I hope to have another conversation with you soon.

  2. As you are an inspired soul, certainly more than a body. I am grateful that you can tell your story out loud. You may recommend some joyous wines that I may share with family.

  3. Elchonon, thank you so much for sharing your fascinating story. Since I met you, you have been a huge inspiration to me. I cherish our friendship and our common passions. Yisrael Yehuda

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