By Beth Mellow
Hospitals are populated with the ailing, those on the brink of permanent disability or even death. You can find relatives whispering to each other in waiting rooms, wondering if their loved ones will recover and lead fulfilling lives. Whether it’s cancer eating away at healthy cells or an oppressive depression wearing away at the soul, it’s easy for patients and their families to want to throw their hands up and give up the fight.
Below are the remarkable stories of individuals who either live with or were treated for seemingly insurmountable diseases on Manhattan’s Upper East Side. While some made miraculous recoveries, others have managed to live well despite their illnesses. They took on their toughest moments with grace to prove to friends, families and doctors that it’s worth it to fight and have hope.
It’s rare that lightning strikes twice, but that’s exactly what happened to cancer survivor Bob Dwyer. An Upper East Side resident and successful litigator, Dwyer was only 44 years old when he was diagnosed with chronic lymphocytic leukemia (CLL).
“My biggest concern after I was diagnosed in 1992 was making sure that I could continue to work at a high level,” said Dwyer. “At the time, I was prosecuting claims from the first Gulf War and flying between Kuwait, Geneva and New York.”
CLL, a disease that affects white blood cells and can cause bone marrow to fail, is usually diagnosed in adults over the age of 70. Dwyer’s doctor discovered the disease during a routine physical exam. Though he has lived with it for 20 years, it has not progressed to the point where he has needed treatment.
With his CLL kept at bay, Dwyer was optimistic that he was in the clear—that is, until a fateful day in 2005, when he found a bump on his neck. A biopsy confirmed that he had two lymph nodes with squamous cell carcinoma. In other words, he had just received the second cancer diagnosis of his life.
Dwyer viewed the situation from a practical perspective, looking at his cancer as a challenge to overcome.
“I’m in the business of solving problems. Being a trial lawyer, I knew it was a priority for me to maintain a normal appearance, a normal voice, and keep working,” he said.
The cancerous lymph nodes were removed by Dr. Erich Voigt at New York Presbyterian/Weill Cornell, followed by chemotherapy and radiation treatment at Memorial Sloane-Kettering Cancer Center. Dwyer’s radiation oncologist, Dr. Nancy Lee, explained that his case was not easy.
“It’s pretty rare and could be a challenge to treat. Bob had about a 50 percent survival rate,” Lee said.
Dwyer took only nine days off from work post-surgery and returned to his job while receiving radiation and chemotherapy. Side effects from the radiation eventually made it necessary for him to have a feeding tube. Still, he managed to go into the office every morning.
“I was strongly motivated to fight for my kids and my wife,” Dwyer said. “My wife was a big support for me. She had Hodgkin’s in college, so she understands what it means to be sick and undergo treatment.”
Surgery, chemotherapy and radiation, proved to be successful. Dwyer, now 64, continues to practice law, enjoy his family, play tennis and golf and even jog. Looking at him today, it would be difficult to believe this vibrant man is a cancer survivor, but he is the first to admit that his illness has impacted him.
“I think it provided me with a perspective of what’s important and what’s not.It made me a calmer person,” he said.
It’s still dark on the mornings when Richard Bernstein heads out for his 4 a.m. training runs. Bernstein, who has completed 17 marathons and is an Iron Man, is totally at ease with running—and doing everything else, for that matter—in darkness. Bernstein, a successful lawyer, professor, human rights advocate and triathlete, is blind.
Born with retinis pigmentosa, a disease that causes severe vision impairment and blindness, Bernstein has managed to view his blindness as a blessing and accomplish miraculous feats despite it.
“An easy life isn’t always a good life. Successfully facing up to difficult challenges can help you feel fulfilled,” he said.
Splitting his time between Detroit, where he heads up the public service division of his family’s law practice, and the Upper East Side, Bernstein has overcome many obstacles to realize his dream of becoming a lawyer. Being blind and unable to read or write, he depended on pure memorization throughout his schooling. At Northwestern Law School, a helper read through dense legal texts he had to memorize before reciting back essays for transcription. The bar exam, which had to be conducted orally, took him eight days to complete.
Bernstein admits that the work was so overwhelming that he wondered if he would ever finish law school.
“I prayed to God and said, ‘If you give me the opportunity to graduate, I will dedicate my life to representing people with special needs,’” he said. After receiving his degree, that is exactly what he did.
From fighting the city of Detroit to equip all public transportation with wheelchair access to collaborating with the Israeli Defense Forces to find ways for disabled people to serve, Bernstein works to improve the lives of those who most need his help. Court cases can be grueling because he has to memorize the case law, as well as 20 to 30 other cases that may be referenced during a trial. Teaching law at the University of Michigan also adds to his workload.
Bernstein began running six years ago with Achilles International, an organization that specializes in helping disabled individuals become runners. A coach from the club runs with Bernstein and guides him with verbal cues.
“Running, for someone who is blind, is the greatest thing. I never had a chance to participate in athletic competition as a blind kid. In school, the athletes were looked up to—I was stuck on the sidelines. That affected my self-esteem.”
Now in his thirties, he is a world away from the young boy he once was. Bernstein is grateful for everything he has achieved and even believes his blindness has brought a lot of great things into his life.
“When you’re blind, you are always looking for a sense of connection,” he said. “You can’t survive on your own—you have to connect with people who can assist you. That’s the gift of blindness.”
Alison, Nicole and Krista Fourounjian
Like all siblings, the Fourounjian sisters have a lot in common. The pretty young women look alike, share the same laugh and are passionate about giving back to the community. Yet, unlike other siblings, Alison, 26, Nicole, 23, and Krista, 20, share a potentially deadly disease called familial adenomatous polypsis (FAP).
FAP is an inherited condition in which numerous polyps form primarily in the large intestine but can also form along the digestive tract. Left untreated, the disease will progress into colon cancer. Treatment requires removal of the large intestine and a careful watch for polyps throughout the patient’s lifetime.
Alison initially exhibited signs of the disease, including rectal bleeding, when she was 12. After multiple tests, she was diagnosed with FAP and at the young age of 15 made the decision to have her colon and rectum removed.
She explained, “I knew I was going to have to have it removed sooner or later, and I felt it would have been more frustrating to wait and wonder if the disease had progressed.”
Nicole, who was diagnosed with the disease only a few years after Alison, decided to have her colon removed at 15.
“We didn’t want to live in fear of cancer,” she said.
Krista had the operation as a high school sophomore as well.
The sisters had their surgeries and continue to be treated at Jay Monahan Center for Gastrointestinal Health at New York Presbyterian/Weill Cornell Medical Center on the Upper East Side. In addition to the removal of the diseased part of the intestine, surgeons also created what is referred to as a “j-pouch,” which serves as an alternative route for channeling bodily waste.
Post-surgery recuperation is extensive and all three sisters missed most of their sophomore year of high school. Until they recovered, the tight-knit New Jersey community where they reside, Parsippany, rallied around them. Friends from the family’s church were supportive and the girls’ classmates visited often.
“All of our friends would come over after school and make us cards. We were pretty fortunate,” Krista said.
Today, the young women live normal and highly productive lives: Alison is an accountant who will be wed in the fall, Nicole is a math teacher and Krista is studying hospital administration at James Madison University in Virginia. They volunteer for Ronald McDonald House of New York, which was a second home for them while they underwent treatment.
Although it could have been devastating to a family to be hit with such a ravaging disease, Krista claimed, “We never felt sorry for ourselves.”
Sara added, “Each diagnosis was emotional at first, but then I knew I had to get into gear.”
Alison, who experienced a complication with her j-pouch as a senior in college that required additional surgery, chuckled, “I even went to the bar with my ostomy bag. It’s really what you make of it.”
Richard Shane was 22, a former semi-professional baseball player beginning a promising career in advertising, when he was hit with his first epileptic seizure.
“It came out of nowhere. I was on the phone with my father and somehow lost awareness for about a minute or so,” said Shane.
At first, the Upper East Sider’s seizures were mild, causing him to lose awareness, but eventually he progressed to grand mal seizures, which involves loss of consciousness, muscle contractions and convulsions. His seizures initially took place every three weeks, but had increased to 30 per month by 2004.
“There was this one time when I was out with friends at Amsterdam’s, a bar on the Upper West Side. I was just sitting, having a good time when a seizure hit me. I ended up leaving the place on a stretcher,” Shane said.
Although he suffered from a severe form of temporal lobe epilepsy, Shane was able to lead a remarkably normal life. He lost his driver’s license, and while his job as an advertising account executive required him to travel to clients throughout the tristate area, he handled the situation by hiring car services or taking public transportation. He continued to date, travel and even ski every winter. He eventually launched Treasure Chest, a successful direct mail business servicing the travel industry.
“If you don’t make a big deal about it, other people won’t either. I would handle [epilepsy] with a shrug of the shoulders,” he said.
Never losing his will to win over the disease, Shane maintained his equanimity in the face of challenges. Epilepsy wreaked havoc on his short-term memory, so when he attended trade shows, he had to keep track of meetings by recording details into a dictaphone. It affected his personal life as well. “I had two very serious relationships and I have to admit that a factor in the break-up of each was the epilepsy,” he said.
After coping with the disease for more than two decades, Shane realized it was time to make one final play to save his life: brain surgery. He set up an appointment to see Dr. Orrin Devinsky, who specializes in treating epilepsy at NYU Langone Medical Center.
Placing his fate in the hands of brain surgeon Dr. Werner K. Doyle, also based at NYU, Shane underwent sophisticated surgery to remove the part of his brain causing the seizures. Devinsky explained that while Shane faced an 80 percent chance of being cured, taking measures as drastic as surgery can be hard for a patient.
“Richard faced a very difficult decision, as his life was in many ways successful, and brain surgery is always a frightening prospect to consider,” Devinsky said.
Shane’s leap of faith paid off, though. He has been seizure-free since the surgery eight years ago. The first thing he did once the seizures were gone? He got his driver’s license.
“Twenty-two years after I lost my driver’s license, I booked a flight to Nice, rented a car and drove around the French Riviera,” Shane laughed.
These days, in addition to enjoying the rediscovered freedom of driving, a successful business and spending time with family and friends, Shane contributes to FACES, a nonprofit organization focused on epilepsy research that is affiliated with NYU Langone Medical Center.
For Shane, it’s been a happy ending. He counts his blessings and feels fortunate for his experiences, “because I can help people with what I have been through.” Still, there are times when he reflects on the decades of struggle, admitting, “I’ve wondered who I would be if I had not had epilepsy.”
Like any other retiree enjoying her golden years, Susan Hansel takes delight in pleasures like the antics of her maltese, Sasha, or a cozy night catching up on programs in her DVR cue. A passive observer wouldn’t recognize this sixtysomething woman as the poster child for manic depression or electroconvulsive therapy (ECT). But she is.
At the age of 25, a year after giving birth to her daughter, Hansel experienced her first manic episode. Two years later, in 1970, she received six ECT treatments. She remained symptom-free for the next 20 years.
Then, in 1990, her life fell apart. Her mother was diagnosed with emphysema and she lost her job as an administrative assistant at E.F. Hutton. Divorced, it was her sole source of income. She plunged into a severe depression that was recalcitrant despite treatment with various types of medication.
“It felt like there was a black cloud hanging over me all the time,” Hansel said.
Four years later, Hansel coped with the heartbreaking losses of her mother and her brother, who took his own life.
In 2010, she was hospitalized for 10 days and was treated as an outpatient with cognitive behavioral therapy, a psychotherapeutic approach that addresses dysfunctional thoughts and emotions through a goal-oriented process. The treatment failed to cure her and Hansel was hospitalized for depression again. Finally, recalling how her symptoms had been alleviated 40 years prior, she sought out ECT treatment. That led her to the outpatient ECT program at Lenox Hill Hospital and Dr. Roberto Estrada, chief of ECT services.
While electroconvulsive therapy evokes images of Jack Nicholson in One Flew Over the Cuckoo’s Nest or the electrotherapy machines utilized in an effort to cure a multitude of illnesses in the 1800s, ECT today is considered a safe and efficient treatment for severe and drug-resistant depression. Hansel was anesthesized for each treatment and experienced no discomfort. After 20 treatments, she was symptom-free.
Estrada is cautiously optimistic about Hansel’s recovery.
“Although ECT remains the most effective treatment for depression, with an incredible success rate of 80 percent, it is a recurrent medical condition that will require treatment again at some point in her life,” Estrada said.
“It’s brought me back to being myself again, and I’m very grateful for the treatment. I don’t know where I would be without it.” Hansel said. However, she added, “I also don’t think I would be where I am today without my support system. I’m extremely close with my daughter and have a great family.”
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