Ken Kunken’s Heartfelt Memoir – I Dream of Things That Never Were
In 1970, Ken Kunken was a junior at Cornell University majoring in engineering. As a member of Cornell’s lightweight football team, players weighing 154 pounds or less, Ken had missed the first two games, once because of the Jewish holiday, Yom Kippur, a second time because of the death of his paternal grandfather. In the third game against Army, he was involved in a total of seven plays. On October 31, the fourth of the season’s six games, the university had shut down for “Citizenship Recess,” when students could go home to campaign for candidates in the upcoming mid-term elections. The campus was nearly deserted, and had it not been for Cornell meeting Columbia on home turf, Ken would have gone home to Long Island. Instead, he was on the field, and during his fifth play, he hit head first a Columbia player who was carrying the ball. He felt an electric shock shoot through his body and although the Columbia player slowly got up, Ken couldn’t move. He had severed his spinal cord and was paralyzed from the shoulders down.
Ken Kunken’s memoir, I Dream of Things That Never Were, nearly 450 pages long, is a detailed account of not only surviving but triumphing over a devastating injury. What elevates this memoir is Ken’s insight and honesty as he tells his story. While it’s about what it’s like to live life in a wheelchair before the Americans with Disabilities Act was passed, Ken also focuses on all the people who came in and out of his life – some for better, some for worse. He knows that he was fortunate to have a supportive family, but he doesn’t shy away from criticizing some of the medical care he received, including at one of the country’s most celebrated rehabilitation centers.
After his injury, Ken was told that the only job he could hope to hold would be selling magazine subscriptions over the phone. Ken, however, was determined to return to Cornell to finish his Bachelor of Science Degree in Engineering and then went on to complete a Master of Arts Degree in Education. After he earned a Master of Education Degree in Psychology from Columbia University, he worked as a vocation/rehabilitation counselor for people with disabilities at Abilities, Inc. in Albertson, New York. Drawn to the law, Ken earned a Juris Doctor Degree from Hofstra University’s School of Law and then went to work as an assistant district attorney in Nassau County where he eventually became a deputy bureau chief of the County Court Trial Bureau.
Anna and Ken
But I Dream of Things That Never Were is also a love story between Ken and Anna, a business woman who came to the U.S. from Poland to improve her English. Working as Ken’s aide while also attending school, she and Ken grew close, fell in love, and married (although not without some bumps in the road). Ken might have thought his life was complete, but Anna wanted children. Enduring the physical demands of IVF, which required Ken to have surgery, and Anna to go through hormone cycle treatment, they achieved what many thought would be impossible – a pregnancy. Since they wanted to have more than one child, they hoped for twins. Instead they got triplets. This past fall, their three sons, Joseph, James, and Timothy, left for three different colleges. In some ways, the Kunkens are a typical American family, except that Ken has spent most of his life in a wheel chair. As he makes clear in his memoir, he wasn’t going to let physical limitations stop him.
Ken actually began writing this book while he was still in the hospital. “Twenty-four weeks to the day I got hurt,” he said, during a phone interview which also included Anna. “I was talking to a family friend who thought that if I put some of my thoughts into a book it might help me deal with the depression. He also thought that the rehabilitation that I was going through was so unusual that it would be very informative. I started on the book by dictating to him and then I started to write some of it on my own, typing very slowly on an IBM selective typewriter.”
Ken credits Anna with helping him to put his feelings into words. “I keep a lot of things to myself and don’t share them with a lot of people, and Anna felt that for the book to have the impact that we were really hoping it would get, I needed to open up and share more of my feelings,” he said. “To really be meaningful, I shouldn’t gloss over anything, but really let people know what it was like. In books about people who have suffered serious injuries or about obstacles that they had to overcome, I didn’t see a lot of detail about events that occurred shortly after they faced certain challenges or injuries. I thought it was important to go into as much detail as I could.”
The Kunken family: Ken, in front. From left to right: Timothy, Anna, Joseph, and James
Once Ken became a father, finishing the book became even more important. “I thought it would be a nice thing to have in detail what my life was about so that I could share it with my sons someday when they were old enough to be able to appreciate a little more about, not just my life, but how much the family had been with me every step of the way,” he said.
Ken’s extended family played an important role in his life right from the beginning. Ken’s mother, Judith, contracted polio and died when Ken was only 27 days old. “Shortly after my mother’s death, we went to live with my father’s parents,” Ken said. Although Ken’s father was still involved in raising Ken and his older brother, Steve, his grandparents became surrogate parents. Ken’s maternal grandparents also were present, coming to see their grandchildren virtually every day. “It was like having two sets of parent figures,” Ken said. “They were so active, not only in my bringing up, but in teaching me the importance of family and family values and just the importance of helping people. And that extended to aunts, uncles, cousins, I mean everybody worked together to help each other. And I grew up being very close to my grandparents, aunts, uncles, cousins and, of course, my brother and sister.” (Ken’s father eventually remarried and while that marriage was not a happy one, it did produce Ken’s sister, Meryl.)
In an early chapter in the book, Ken talks candidly about his relationship with his father, Leonard. Becoming a widower at a young age, then living through a difficult marriage for ten years, took a toll on Ken’s father. When Leonard married for a third time, his wife, Betty, “never expected to contend with problems associated with her husband’s children,” Ken writes. Leonard rarely intervened when Ken complained about his hospital care in Nassau County. “I believe it was Betty who pressured my father into what seemed like harsh treatment,” Ken writes. While Ken was hoping to move from the hospital to Rusk Rehabilitation, he heard rumors that his next move might be to a nursing home.
Thankfully, others stepped up. “Although there were many relatives that pitched in to help, the two most important persons in Ken’s rehabilitation in those years were my mother, Lorraine Danis, and Ken’s nurse and soon to become an indispensable dear and devoted family friend, Barbara Crook,” said Ken’s cousin, Jill Danis. (A chapter in the book is titled, “To Barbara, with Love.”) And before the plan to move Ken to a nursing home could take hold, Lorraine, supported by her husband and family, had Ken moved to their home. “My mother and father said, `Over my Dead Body.’ And they meant it,” Jill said.
In essence, Ken’s book is an extension of what began while he was still recovering – being a spokesperson for people with disabilities. Following his injury, because of the enormous expenses involved in his care, friends set up two funds to help – the Ken Kunken Fund launched by his coach at Cornell, and another set up by the Oceanside community near his hometown on Long Island. “As a result of those two funds it was important to get some publicity about me and what I was going through and to encourage people to contribute,” he said, adding that it was often challenging to share stories about himself and remain positive. “But I also knew that people meant well and by sharing my story I could draw more attention to the need for better health care and support when you have an injury such as mine. I felt that I could play a positive role for families who had relatives going through it or people who were going through it themselves.”
The letter and paperweight from Senator Ted Kennedy (Photo by Anna Kunken)
On April 13, 1971, New York Newsday wrote an editorial, “The Kunken Case,” which described Ken’s accident and how much his care was costing. One of Senator Ted Kennedy’s aides saw the editorial and came to the Rusk Rehabilitation Center where Ken was being treated. Ken was told that Senator Kennedy would be at Hofstra University conducting hearings on health care and asked if Ken would come. Even though Ken spent a miserable night before the hearing, he and his father, who had worked in the insurance industry for more than 25 years, attended. Ken’s father, who spoke “without notes and with a lot of passion,” gave the testimony the senators needed to hear about the overwhelming cost of care for someone with a catastrophic injury. Ken, who was unprepared to speak, nonetheless followed, giving a face to the issue. “Then Senator Kennedy got up and walked over to me,” Ken writes in his book. “He lifted my hand up in his and held it. I was later told there was a tear in his eye.” A week after the hearing, Ken received a letter from Senator Kennedy and a paperweight engraved with a quote from the senator’s brother, Robert F. Kennedy. Part of that quote, “I dream of things that never were,” became the title of Ken’s book.
While many people with disabilities still struggle with meeting their medical and care expenses, the Americans with Disabilities Act has made some things a little easier. Unfortunately, the ADA was still nearly 20 years from being passed into law when Ken arrived back at Cornell. Ken needed to employ an aide to help with his physical needs and to wheel him around campus. “I chose to go back to Cornell without thinking about all the architectural barriers I would find,” Ken said. “There was not one ramp or curb cut on the entire campus. And because the campus was on a very hilly terrain, virtually every building had steps in front of it. By the time I would get to class, I would spend so much time worrying about getting back and forth, up and down the steps, that it was difficult to pay attention to what the professors were lecturing about.”
Unlike Cornell, Hofstra, where Ken earned his law degree, was ahead of its time. “Hofstra was a school that was well set up and they were not far from where I lived,” Ken said. “Part of that was because of Dr. Henry Viscardi, Jr., who the Viscardi Center was named after.” Dr. Viscardi, who wore prosthetic legs himself, fought for the equality and employment of disabled people in the workforce. He founded Abilities, Inc., where Ken later worked, and was also an advisor to many presidents.
On the Cornell campus with Dave, May 10, 1972 (Photo Credit: © Roger Archibald)
Obstacles existed, not only at Cornell, but at many other places Ken wanted to visit. The summer after his first year at Hofstra, he went with a group of friends to Williamstown, Massachusetts, to see Whose Life Is It Anyway? The play, set in a hospital room, is about a man who is paralyzed from the neck down after an automobile accident and wants to die. “It was so strange sitting in the audience and watching this play about an individual who had an injury similar to mine, where he’s hurt between the fourth and fifth cervical in the neck, and his name was Ken!” he recalled. “It was like seeing my life unfold before a group of strangers.”
What was most disconcerting is that because Ken was in a wheelchair, he had trouble getting into the theater. “They made a play about someone with physical limitations who needs to use a wheelchair and they made it almost impossible for someone in a wheelchair to get in to see it,” he said. “So there were so many emotions I had going through my mind at the time. And part of it was maybe I needed to share more about my life and my story to let more people into my world so they would know not only what I was going through but what others were going through and in the long run, maybe that could be beneficial.”
After the play, Ken had the chance to meet Richard Dreyfuss, the actor who played Ken. In his book he writes: “I could see that when I told Dreyfuss I got hurt playing football, it really moved him. Just imagine how he felt when I told him my name was Ken, that I had broken the fourth cervical in my neck, and that I actually experienced so many of the things he portrayed in the play. Suddenly, his character became a real person to him.”
While Ken’s family and friends were always ready to help, he needed full-time aides. As described by Ken in the book, some of the aides got high marks, others just needed the money. One, in fact, stole from Ken. In 1999, while Ken was working in the district attorney’s office, he was looking for a new aide. He placed an ad in the Polish Daily News, a source he had used before with positive results. Anna was among the women who responded. One of Ken’s first questions was how tall she was, since anyone under five feet, seven inches would have trouble lifting him from the bed to the wheelchair. Anna said she was 184 cm, which Ken quickly calculated to be six foot one.
“I came here to immerse myself in English, because it was very difficult for me to learn English back in my country in the 90s,” Anna explained during the interview. Working in marketing and management, Anna said without English she would not be able to advance in her career. “For me just coming to the United States, specifically to New York, it was a revelation,” Anna said. “In my country, you’re Catholic and you have the same points of view. Here I’m meeting people from all different places. New York is really unusual in the U.S. There are so many nations, cultures, and cuisines together in one place.” Anna initially planned to stay in New York for only six months. “But then I knew it was better for me to stay longer,” she said. “I was in school here on a student visa, but then I also wanted to talk to someone in proper English. It turned out to be Ken.”
Anna and Ken on their wedding day, June 14, 2003
“Soon after I was injured,” Ken writes in his book, “I had decided that as long as I needed to use a wheelchair I would never get married.” But after getting to know Anna, he began to envision a future with her. They married on June 14, 2003.
When Anna first raised the idea of having children, Ken wondered if his condition would make that goal impossible. “Twenty years ago, you really didn’t know much about the specifics, that someone with a spinal cord injury could still father a child,” said Ken. “That was a miracle of science.” Anna added: “We were just lucky. We hit the jackpot.”
Anna and Ken had siblings and so wanted to have more than one child. “I remember thinking, wouldn’t it be great if we had twins?” Ken said. “Wouldn’t it be great if Anna only had to go through this cycle once, and not twice?” During the sonogram, the doctor began to count the “sacks,” each one holding a potential baby. “I was hoping for two and then we see there are three,” said Ken. “It was incredible.”
Ken with the baby triplets
Since Anna’s was a high risk pregnancy, they waited until Anna made it through the first three months to tell the family. Anna delivered the babies via cesarean section on January 25, 2005. Because they were premature, they spent days in the NICU.
Ken taking the boys for a ride
Ken always knew that, because of his physical limitations, he would be a different kind of father, not being able to change diapers or feed the babies, and, later on, not tossing around a ball. But he found ways to connect with his sons, sitting them on his wheelchair, for example, for walks around the neighborhood. Because his injury happened on Halloween, he always found that holiday depressing. With the boys dressed in costumes, however, he celebrated rather than dreaded Halloween.
Ken celebrates Halloween with the triplets
Ken still watches New York Jets games, although he has conflicted feelings. “In my mind, football is a very violent sport and people playing it understand that it’s violent,” Ken said. “Not only are there a lot of head injuries, despite the fact you are wearing a helmet, but you are taking a lot of that impact in your neck, which is certainly not built to take an impact like that. Unfortunately for me, I was not aware how dangerous that was until I had my own injury.”
Yet, Ken remembers what he felt when going onto that field. “To me, I’m remembering the joy that I got from being involved in sports and how important it was for me to always be in good physical shape, because it was healthy and because it would allow me to participate in sports,” he said. “Part of it was being involved in a team sport, the camaraderie with your teammates, how you share a certain goal and work towards it. After playing for so many years, I felt I could still appreciate watching the game, but I certainly wouldn’t allow my boys to play football. They don’t even want to watch it. They wouldn’t think about playing it in any event. I recognize now, at least after I was hurt, how truly dangerous it is to participate in a sport like that. But there’s still something about the action and the camaraderie that I enjoy about it.”
James, Timothy, and Joseph (Photo by Jeanie Danis)
James, Joseph, and Timothy have stepped up to help their father promote his book, being interviewed on TV and for a podcast. “They turned 18 last year when the book came out, so it was the perfect time for them to do it,” Anna said. “I was always reluctant to put them out there in front of the cameras when they were much younger. This thing about `being famous for being famous,’ in society, it can mess up your head. But now I don’t think it’s going to happen to them because they are so grown up, responsible, and understand what is going on. They help Ken to promote the book in the right way. It’s perfect timing.”
“It’s absolutely incredible to see these boys,” said Ken. “How they’ve grown to be such wonderful young men who are so bright and so accomplished. The way they help others and the way they help me and each other. It’s like watching a never ending movie. You just marvel at it when you are watching it. We have been so fortunate with that. To really have them.”
Now retired, Ken is in demand as a motivational speaker. He’s aware that what he’s managed to accomplish sets the bar high. Speaking at one high school, a student said that Ken made it all seem so easy. “It certainly wasn’t easy and I received so much help from family and friends that helped me to accomplish so many things that I never would have been able to do without that help,” he said. “The message I want to get across is that there’s a lot that people can do that others don’t think they can do, and oftentimes it’s attitude and attitudinal barriers that keep people from accomplishing as much as they possibly could.” He added: “Now it’s common to hear the words diversity, equity, and inclusion. I think that goes a long way to include not only people who may be of a different race or religion or gender, but people with different physical attributes or mental attributes as well. There should be no discrimination with respect to people with disabilities when it comes to working at a job or being involved in recreational activities. Everyone should have the same opportunity.”
Top photo: Anna and Ken (Photo Credit: Grzeg and Gosia Blazejczyk, ProjektPortret.com)
All family photos, courtesy of Ken Kunken
I Dream of Things That Never Were, The Ken Kunken Story
Kenneth J. Kunken
