“We continue to find love, hope and happiness in spite of our challenges and have refused to allow the limitations with which we live stop us from doing what we want to do.” — Cheryl Tsieprati, married to Ismail, who has Lou Gehrig’s disease, on life as a couple
With March recognized as National Developmental Disabilities Awareness Month, it’s a good time to reflect on couples with disabilities who have an unconditional love that comes from the same emotions, needs and desires for romance and companionship as couples without disabilities.
“Their romantic and personal relationships are just as varied as those of individuals without disabilities, and their relationship struggles reflect the same multitude of personalities, needs and aspirations that we see among couples without disabilities,” said Lori Anderson, president and Chief Executive Officer of United Cerebral Palsy of Los Angeles, Ventura and Santa Barbara Counties (UCPLA).
This is true for Simi Valley couple Ismail and Cheryl Tsieprati, who celebrated their 48th wedding anniversary in 2018. Ismail, now 83, started experiencing his first symptoms of muscle pain and weakness in the 1960s, before he and Cheryl met.
“In the late 1960s, a doctor prescribed a neck collar for pain and weakness in my neck,” remembered Ismail, who began experiencing weakness in his right arm in 1976 and, by 1980, “I was unable to hold my infant niece in my arms when posing for a family photo.”
Seventeen years after he and Cheryl were married, Ismail was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. When he was first diagnosed, he was told that the average length of survival for people with this disease is two to five years. The disease attacks nerve cells in the brain and spinal cord, and those afflicted lose their ability to move, speak and swallow, and eventually the ability to breathe, while all five senses continue to function normally.
Ismail was working as a film and video editor, producer, director and writer at the time of his diagnosis. And when he lost the ability to move on his own, he continued to write, authoring a book, One Blink at a Time, with help from Cheryl. Ismail wrote the book one letter at a time, one word at a time, one sentence at a time, by blinking his eyes toward individual letters on an alphabet chart that Cheryl designed.
In a recent interview, when asked what has kept his marriage to Cheryl so strong for so long, Ismail wrote: “I love my wife and enjoy being with her. She is my best friend and collaborator. I want to continue to be with her as long as I can.”
“We are one another’s rock”
The Tsieprati couple has kept their bond strong for the past 48 years “because we have as much respect and affection for one another as we did the day we were married,” said Cheryl, 72.
Despite his illness, the pain he suffers every day and his physical limitations, Ismail continues to enjoy life and be upbeat, good-natured and loving, his wife said, further emphasizing, “We are one another’s rock.”
When Ismail was first diagnosed, Cheryl feared his condition was “hopeless” and that he would die young. Still, “We made a pact to fight this battle together, do whatever we could to beat the odds and keep Ismail alive and happy for as long as we could,” she said. Decades later, “We continue to find love, hope and happiness in spite of our challenges and have refused to allow the limitations with which we live stop us from doing what we want to do.”
Many people think that all couples who deal with disabilities have a difficult, unhappy life, “and they often pity them,” Cheryl said. In reality, she said, couples dealing with such challenges are much like other couples, who have their own unique set of obstacles, adding that “love, devotion and perseverance give couples the tools they need to maintain a strong, happy relationship and full, successful life.”
“The common denominator”
In the presentations Cheryl gives to groups and organizations, she talks about how everyone faces adversity, and that a person’s reaction to those adversities can shape the future of his or her life. The title of her presentation is “Dancing in the Rain,” based on a quote by Vivian Green: “Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain.”
“I share Ismail’s and my personal story and how, despite the challenges with which we live, Ismail and I continue to enjoy life and one another,” she said.
While the general public might not see couples with disabilities out and about, many people with disabilities are involved in loving relationships and enjoy being out and about together, Cheryl noted. For instance, she and Ismail became friends with a man with ALS and his wife and one of his caregivers whom Cheryl initially met in a local coffee shop.
“Despite his being in a wheelchair and on a ventilator, the three of them visited the coffee shop often and enjoyed going to many other places together,” Cheryl said.
The Tsiepratis have also become friends with another man and his wife who attended a fundraiser Ismail and Cheryl gave at a local restaurant for the ALS Association a few years ago.
“He had been recently diagnosed with ALS at that time,” Cheryl recalled. “This couple is always out and about and recently took a cruise and a trip to New York. The common denominator in both of these couples is a strong, loving relationship and a determination to enjoy life as much as possible and do things together.”
Couples with varied abilities are like other couples
Although individuals with disabilities who choose to be in relationships do have unique challenges, these obstacles are often societal, rather than specific to the individuals themselves, Anderson said.
For instance, Anderson noted that many individuals with developmental disabilities experience relatively limited opportunities for employment, education and socializing — the avenues many people of any ability use to find romance or meet a significant other.
Individuals who live with intellectual or developmental disabilities must also deal with the issue of benefits when deciding whether to combine households with or marry a significant other, Anderson continued.
“Just like with gaining employment, pursuing personal independence — in this case, to have a long-term relationship — in this arena can cause changes to or decreases in benefits (SSI, SSDI, etc.) that present challenges to living an independent lifestyle,” she said.
As far as financial challenges are concerned for Cheryl and Ismail, they face many of the same financial challenges as other married couples. “We probably have some additional medical expenses such as medications and some medical supplies, but we are extremely fortunate that we do not have nearly as many challenges as some other couples faced with similar medical issues,” Cheryl said, adding “We have excellent medical insurance and we are in a special program that pays for Ismail’s nursing care.”
Anderson said that other than challenges mentioned above, “which are a result of a society that has not yet achieved full inclusion,” she emphasized that couples with varied abilities are like other couples: “They seek love and companionship, they fight and make up, they find ways to cope with incompatibilities in their aspirations and lifestyles, and they support and love each other.”
“We see this every day in UCPLA’s programs and services, and we hope this reality continues to become more visible so the obstacles that face individuals and couples with disabilities can be removed from the path to living a limitless life that includes love, romance, and fulfilling relationships,” Anderson said.
Born with cerebral palsy, Paul Nankivell spent 12 years writing his first book, Redefining Normal, and is now in the process of writing Redefining Romance, which is about people in wheelchairs seeking a romantic relationship.
The 55-year-old Simi Valley resident believes the biggest myth about people who use wheelchairs is that they are “asexual and don’t desire romantic relations.” Additionally, “I’ve encountered quite a few people who think that people in wheelchairs are unable to have children.”
While he cannot give a definitive answer about how common it is for people with disabilities to be involved in relationships, “based on my experiences, and reading about experiences from other wheelchair users, finding love is a lot harder for folks in wheelchairs than everybody else.”
He does believe that non-disabled people “have a very tough time finding ‘The One’ as it is,” however, “when you have to keep fighting people’s negative first impression about why you’re in a wheelchair, it can be difficult for potential romantic partners to see you as date-able.”
As far as resolving issues and obstacles, just like able-bodied people, “each person is unique and has to find their own solutions,” Nankivell said. And, when it comes to intimacy, “I know that quite a few physically challenged men — and some women — travel to legal ‘spas’ in Nevada. That’s the only option for many physically challenged people.”
The bottom line, he said, is that “each person is unique and has to find their own solutions.”
“People with physical challenges can’t get caught up in the cultural obsession of finding ‘the’ person who completes them,” Nankivell further emphasized, adding that “finding someone that you are compatible with is hard for anyone these days.”
“When you add a physical challenge on top of that, odds of finding companionship get significantly worse,” he said. “So . . . live your life and be happy and at peace in your own skin. And, if by chance a good person comes along someday, trust your instincts. Trust your heart. And, don’t fear the journey.”
Kim & Tom
Kim Hudson-Hershey has been active with UCPLA since age 4, when she started benefiting from the organization’s services.
“Her engagement with our organization has grown into being a volunteer, donor and advocate,” said Amy Simons, UCPLA’s Chief Development Officer. “Whether through social work, advocacy or connecting people to resources, she has devoted herself to promoting full inclusion. Now with her blog (Love On Wheels) she and her husband, Tom, are furthering an important conversation about relationships, love and success as a couple.”
Kim and Tom met at a party almost 25 years ago, dated for awhile, and went their separate ways. Tom then met someone else who he married in 2001, and when his wife passed away in 2015, he and Kim reconnected.
“It was like meeting an old friend, and taking it further has been an incredible experience,” recalled Kim, 51, who was diagnosed with cerebral palsy and has a Master’s Degree in social work.
Tom, 56, who has an MBA and works for the entertainment industry, is “small statured” and uses canes and an electric scooter to get around. “I have a whole basket of different anomalies; mostly like deformity and muscle control,” he said, noting that it’s similar to cerebral palsy, “although it’s not actually CP,” adding his exact diagnosis was never determined.
Most people think that relationships between people with disabilities are “somehow different, inherently different, and they’re not that different,” Kim said. “There are some things you need to take into consideration, but every aspect of a good relationship between any two people is the same thing that we deal with — communication and shared values.”
Tom believes general compatibility begins with starting as friends, then you develop a romantic relationship, “not unlike anyone else.” He further emphasized that “we both have patience for one anther because we have patience for ourselves in terms of our ability to get along, to be spontaneous, and in terms of our propensity about mishaps around the house.”
This translates to empathy, Tom said, and “an understanding that it’s going to take me a little longer to get ready than an average able-bodied person.” In another example, “I can’t just jump in the car. We have to think ahead and think about logistics, that’s another layer.” Luckily, he said, “Kim and I both have patience . . . general self-awareness that we apply to the other person. It makes a big difference.”
As far as day-to-day outings that able-bodied couples might take for granted are concerned, Kim remembered a recent Saturday night when they went to a restaurant they hadn’t visited in a long time. The space was very small, so Kim had to call ahead of time to make sure the restaurant was still wheelchair accessible, “because we both use mobility devices; I use an electric wheelchair and crutches and so does Tom.” They also had to make sure the restaurant had enough room for both of their devices, “and in this case the restaurant did not.” So the couple adjusted by preparing ahead of time: Kim used her crutches, and Tom parked their car as close to the restaurant as possible so she didn’t have to trek too far.
“It just takes a little planning,” Tom said. “Not to say we don’t plunge into stuff sometimes, but we usually try to come up with the best option.”
“Don’t sweat the small stuff”
As far as conflict and resolution is concerned — in other words, arguments — Kim and Tom re-emphasized they started out as friends with a lot of similar goals and aspirations, so they already “get along really well,” Kim said. “We agreed there are some things we’re not going to agree upon, so we compromise.”
For instance, “Kim is very much a Democrat and I come from a more conservative take on things and we disagree on stuff,” Tom said. “I’m a liberal when it comes to social issues . . . but we’ll see each other’s points. We have some common ground between us; we can say we’re not going to come to a conclusion, but it’s not affecting our day-to-day. Other times, I’ll come to her side. So it’s a matter of communication and maturity.”
Above all, Kim believes, “don’t sweat the small stuff. Fundamentally, I respect who he is; he’s his own person, I’m my own person. We have a right to differ as long as we’re respectful to one another.”
Tom doesn’t believe they’re all that different from other couples who get along well. “We have the same ingredients — we’re just in different packages.”
“We disagree from time to time”
Just like other married couples, Ismail and Cheryl do have arguments.
“We both have strong personalities and opinions and, although we agree most of the time on most things, it is only normal that we disagree from time to time,” she said.
Many people would assume that Ismail is at a disadvantage in these arguments because he is unable to talk, she said, “but those people have never experienced the chill of Ismail’s angry teeth-grinding. He demands attention and respect by grinding his teeth loudly and persistently until he is allowed to finish saying his piece by blinking out every last word. Once we have each finished clearing the air and calmed down, we kiss and make up.”
Looking back on nearly five decades of marriage, Cheryl said, “if someone had told me . . . that I would be Ismail’s caregiver for 30 years, I would have felt completely overwhelmed, but because Ismail and I traveled this journey one step at a time and tackled our challenges one problem at a time, the days and then the years passed, and here we are.”
“Ismail and I have a strong sense of unconditional love, and I’m convinced that this has kept us going through the hardest times,” she added. “We find love, hope and happiness in spite of our challenges and continue to prosper and dream. We have both refused to allow the limitations with which we live stop us from doing what we want to do.”