The Long Way Around

The literal definition of hydrocephalus, the disease Gelman suffers from, is “water on the brain,” caused either because of an overproduction of cerebral spinal fluid that causes leakage or the brain membrane’s inability to absorb the fluid. (When he was in sixth grade he did a science fair project on hydrocephalus.)

The condition tends to show up at birth, due to a prenatal or birthing defect, or up to the age of five following a head injury, though it can be diagnosed at any point in a person’s life. Elderly people with hydrocephalus are frequently misdiagnosed with Parkinson’s or Alzheimer’s since some of the symptoms overlap.

A shunt in the brain, which drains the cerebral fluid to a point beyond the brain and spinal cord, where it is excreted into the abdomen instead of being reabsorbed back into the veins, is the only treatment. The shunt used today, called the Wade-Dahl-Till valve, was developed in 1962 by hydraulic engineer Stanley Wade, author Roald Dahl, and neurosurgeon Kenneth Till. Dahl, who authored the children’s classic Charlie and the Chocolate Factory, had a son, Theo, who was diagnosed with hydrocephalus after being struck by a taxicab.

“Look who invented it — a hydraulic engineer and the author of Charlie and the Chocolate Factory,” Gelman says. “Dahl was a virulent anti-Semite, by the way. But do you know how much hakaras hatov I have to him?”

Gelman had a shunt inserted on the day of his birth to drain the excess fluid in his brain, though he continues to need emergency surgeries at least once a year. With half of shunts failing within two years, frequent emergency operations are necessary to fix them. Hydrocephalus usually means a lifetime of brain surgeries, and the Hydrocephalus Association says that “dozens of brain surgeries are common and 100 or more is not unheard of.”

It’s now almost a year since Gelman’s last brain surgery. He’s had 36 in his lifetime, the first being the day he was born.

Given hydrocephalus’s rare designation, biomedical companies pour money into research for a cure, rather than investing effort on improving on the existing solution. The shunt hasn’t been updated in 60 years. For more common illnesses, companies focus on updating the device that treats it, at the expense of a real cure. The pacemaker, for example, has advanced greatly over the years.

There have been moves to remove hydrocephalus’s rare disease designation so the federal government will kick in with research grants to improve the shunt therapy. But the hydrocephalus community would prefer the rare label stay so that the goal should be an actual cure, not just a better interim solution.

“I would love a real cure for my disease,” Gelman said. “What I have now is just a Band-Aid. It would be amazing if they’d invent a pill that I could pop and no more shunt, no more surgeries.”

Still, Gelman manages to derive chizuk from his shunt. “The shunt drains the fluids the long way around,” he says. “When things in life don’t go the way I like it, I take solace that maybe this is how the Ribbono shel Olam wants it, to go the long way.”

Giving Back

Gelman’s condition meant that he spent a significant amount of time in hospitals. His childhood fascination with the angels in white led him to promise that when he grew older, he, too, would dedicate his life to others.

“I spent so much time in and out of hospitals that I got to see the selfless work of doctors and nurses,” Gelman says, “and I wanted to give back to the medical community.”

While learning in Eretz Yisrael as a bochur, in the Mir, he became an emergency medical technician at the local Hatzalah. He did the same when he returned to the United States.

When he started shidduchim, he was prepared for a rough time. The Gelmans were determined to be open about Yehuda’s condition, including the fact that he has a moderately noticeable limp. But when it’s meant to be, it’s meant to be. Tzipora Elefant from St. Louis had a friend whose husband knew Yehuda, and it wasn’t long before Tzipora and Yehuda got engaged. The couple has five healthy children today, the oldest aged 13.

After getting married, Gelman set out to tackle his longtime dream. He enrolled in nursing school, prepared to confront the double challenges caused by his condition. But scholastics were never his strong point, and his cerebral palsy meant that he has a hard time holding a pen.

In order to compensate for his low marks, he needed to excel on his finals. “I studied my head off,” he says, “but on the day of the exam I woke up with such a headache that I told the proctor that I can’t take the exam, I have this massive headache.”

The proctor, assuming the headache was anxiety induced, advised him to take a drink and walk around the block. But the headache’s real cause was the fluid buildup on his brain. Days later he was hospitalized for emergency surgery and discovered that his shunt had broken at least a week before.

The school allowed him to retake the test, but the day before his makeup exam, he needed another emergency surgery. When he finally took the test a month later, he failed.

Loath to give up his dream of helping others facing medical challenges, Gelman decided to volunteer for the Hydrocephalus Association, an organization dedicated to finding a cure for the condition and helping patients enjoy improved quality of life. He opened his own organization in 2018.

Gelman named his organization — a patient advocacy support system for people suffering from rare diseases — Highway of Hope. The name has an interesting story behind it.

Gelman was in Washington for Rare Diseases Week, a week when the rare-disease community gathers on Capitol Hill to try to effect legislative change that can help patients. The road he needed was closed, so he followed the GPS’s instructions down the unfamiliar John F. Kennedy Memorial Highway in Virginia. He was alone on the unlit road, which he thought was odd, when suddenly, the GPS abruptly shut down.

Somewhat frightened, Gelman continued driving for several miles until he spotted a vehicle in the distance and followed it. In a few minutes he was off the highway and his devices began working normally again. He later found out that he had passed CIA headquarters in Langley, Virginia. The spy agency would routinely turn off all networking in the area to test a system of theirs, which explained why his vehicle mysteriously had gone dark.

Gelman sees in this incident a metaphor for patients with rare diseases. His regular route for getting home wasn’t an option, and he was alone on the highway, with his navigating system down. But following a car he’d never seen before, however, he knew there was a fellow traveler on the unfamiliar road. Patients who suffer from diseases their doctors may never have come across may feel alone, but can find strength in their fellow travelers. His organization aims to provide patients with a highway of hope.

Back on Their Feet

Gelman credits his innate empathy and desire to help others to the home he grew up in. He says the attitude in his childhood home was one of “We are going to look for the next opportunity to help.”

“I’m forever grateful for having that mindset,” Gelman says.

While other patient advocacy groups focus on helping patients deal with the medical bureaucracy, Highway of Hope emphasizes the life and wellbeing of the patient and his family. Gelman compares the phenomenon to two Henrys in American history, Henry Berg, founder of the American Society for the Prevention of Cruelty to Animals, and Henry Ford, who invented the tractor.

“Who did more for horses?” he asks rhetorically. “The other organizations look at the medical side of the patient,” Gelman continues, “while at Highway of Hope, we look at the whole patient and know that there is more to the patient than his medical condition. There is his quality of life, his job, his ability to interact with society. When they have this, that gives them a will to fight, despite their condition.”

He mentions two people who contacted him, both of whom lost a leg to cancer. One person had a job as a street sweeper. He liked his job and wanted to maintain it, and his employer had promised that if he got fitted with a prosthetic leg and did the necessary therapy, he would hire him back. That gave the patient the motivation to go through the process.

The other person had been working at a desk job and had no incentive to learn how to adapt to his new circumstances.

“His prosthetic is collecting dust under his bed,” Gelman said. “But when I speak to the first person, he is for all intents and purposes a regular person. He can do his own shopping and housework.”

Gelman tries to find creative solutions for medically challenged people and their families. For example, when a child is disabled, he says, the parents usually outfit the family vehicle to accommodate him, and often one parent stays home to care for their child. That means that the family turns into a one-income household, with a wheelchair accessible car that sits in the driveway most of the time.

Gelman might encourage the mother to become an Uber driver for disabled children, generating more income for the family and getting another vehicle for the disabled on the street.

He currently has three staff members and approximately 2,500 volunteers for his organization and averages 31 new calls a day from across the nation, with up to 20 new patients joining every day. All the volunteers are themselves rare disease patients or parents of patients, and he matches each caller with a volunteer who belongs to their community. Gelman himself handles frum patients.

He encourages those diagnosed with a rare disease to join support groups and see a psychologist, as he himself did as a preteen. “That was the greatest thing for me,” he says. “I’m still proud of it.”

Making It Work

Highway of Hope works with vendors to give patients the tools they need to lead a regular life, from designer clothes that fit their unique needs to video games that can be maneuvered without fingers.

“People in the real estate industry go to real estate conferences, mortgage conferences and tech shows,” Gelman says. “I go to every conference I can, even if it has nothing to do with rare diseases. I went to a real estate conference, because when builders realize that you need a ramp, it makes things so much easier. I go to fashion shows because they now realize that they have to design clothes for people who need the extra snap or the extra material.”

He was at a technology conference several years ago to encourage video game makers to add a gaming console for children who have no control over their fingers. He was told that there was no need for it.

He came away disappointed, and shared this with a father at a disabilities conference. He was puzzled when the man, who was an Indian-born American and obviously some kind of tech whiz, said he would “put my team on it.” He didn’t even know who the man was. But within months, he heard that the man’s team had produced a prototype for a gaming device that didn’t require fingers.

“What Samsung and Sony couldn’t do, this man’s company did,” Gelman marveled. “And there’s more — the device is now mass produced. Because the man I met is the CEO of Microsoft, a man named Satya Nadella. He has a son with cerebral palsy. He is a father who is hurting. He wants his son to live a good life. He wasn’t looking at his son as a patient, but as a human being.”

Another minor but significant service Gelman offers is a playlist of Jewish music to measure time during an MRI exam.

“When I was a kid, one of the most frightening things for me was getting an MRI — you go into this tiny little tube and you hear the clacking of the machine, you feel like you’re in a different world,” he says. The hospital offers a choice of music radio stations to listen to during the 30 minutes or so the exam takes.

“I’ve since figured out,” he says, “that if you call the MRI place ahead of time with the prescription, then they can tell you the length of the picture and exam.” He created playlists of Jewish music based on how long the MRI is, allowing patients to know based on the song how far in they are and when the test will be over. “Knowing the time, more than anything,” he says, “helps deal with the anxiety.”

Permission to Share

Gelman has strong feelings about the broader community’s outlook on illness.

“The worst thing that Klal Yisrael has done is call cancer ‘yenne machlah,’” he says. “If cancer, which is so prevalent, can’t be mentioned, how can I talk about hydrocephalus? I have to bottle it up and never talk about it. I feel that if we demystify it then people will be much more willing to talk to a therapist. Why should people feel like they can’t talk about their disease?”

Gelman says he would like to see the rare disease community turned into a united faction. “We’re 32 million people, but we’re fractured,” he laments. “There’s a lack of understanding even among the physicians and clinicians. We do a lot of work just educating the physicians.”

The rarest case Gelman has encountered is a condition that doesn’t even have a name. KIF1A, known by its gene mutation, afflicts just 82 people in the United States. Children with the condition lose their eyesight and ability to speak, and generally have a maximum life expectancy of seven years. Research and treatments have extended that to nine years. He reassures these patients, noting that his own disease, hydrocephalus, once had a lifespan of three years.

Some diseases are so rare, there is only a single known instance of it. “I have 11 patients, all of them children, who are officially known as the only ones in the world with their conditions,” Gelman says.

Gelman mentions Luke, a secular Jew he met in Washington during Rare Disease Week. Just days before, Luke had received the devastating news that his four-year-old daughter had been diagnosed as the 19th child in the country with the KIF1A disease.

The group was going around the Senate office building and meeting with legislative aides. Luke was telling his story to Senator Charles Schumer’s aide when he got a call from his wife. She’d been carrying their daughter up the stairs outside their Manhattan apartment building in a carriage and had accidentally dropped her.

“I know I’m supposed to be asking for increased funding for rare diseases,” Luke told the Schumer aide, “but what I need right now is a ramp.” He lives in a rent-controlled complex that is on the historic buildings list. Even minor construction requires extensive paperwork and a permit process that can extend for years.

Hearing Luke make his pitch, Gelman’s heart melted. He and another person present promptly raised $800 from the group and built the ramp. The buildings department demolished it, claiming it was illegal. “We built it again,” Gelman said, “and again they demolished it. And we built it a third time. This is what I was saying, we focus on the person, not just his medical condition.”

Around to Tell the Tale

Gelman still encounters a lot of ignorance and indifference related to his condition. He recalls an incident from his days in nursing school that he still chuckles over. His teacher was saying that the average lifespan for those diagnosed with hydrocephalus was 17.

Gelman smiled.

“Mr. Gelman,” his teacher exclaimed sharply, “do you find something funny about death?”

“No,” he responded. “I find something funny about your statistic which was last true when Florence Nightingale was in nursing school.” Nightingale, the matriarch of modern nursing practices, died in 1910.

“Mr. Gelman, how dare you?!” the professor retorted. “I have been a professor for 30 years!”

“I know,” Gelman answered. “But I have hydrocephalus.”

The teacher insisted, though, on having the last word.

“Mr. Gelman,” she said, “do you thank G-d that you’re from the 30 percent?”

“Physicians,” Gelman tells me, “have a saying that they tell parents, ‘Don’t confuse your Google search with my eight years of school.’ I say, ‘Don’t confuse your eight years of school with my living with it.’”

Gelman reflects back to that time when he had wanted to make a difference by becoming a nurse.

“Instead of helping eight patients for three days a week,” he declared, “I went to helping thousands of patients seven days a week, in a way that I wouldn’t have thought possible.”

(Originally featured in Mishpacha, Issue 904)