Imagine if after you acquired your disability you saw someone walking around who looked exactly like you “used” to look. We spoke with identical twins — one of whom has a disability — to learn not only how twins’ lives are inextricably intertwined, but also how their shared reality changes dramatically when disability occurs.
At the end of a long Memorial Day weekend in 1994, camping with her extended family and friends, Kathi Nordgaard was talking with her daughter in their tent when she heard “the loudest sound in the world,” a cracking — like a gunshot — reverberating throughout the woods. Her brother, Kevin Winkels, screamed, “Tree!” Kathi tore through the South Dakota campground, running to the picnic area to find her father, Stan, gagging and yelling incoherently, and her identical-twin sister, 31-year-old Kari Krumweide, lying on the ground, gasping for air. Several people in their party were scrambling to brace a huge tree that had snapped at its base, fallen and hit Kari and Stan, nearly killing them both.
At the hospital, Kari, in pain, watched as her baby — 18-month-old Tate (“Tater”) — ran to her look-alike sister for comfort, while Kathi begged doctors to give her sister something for pain. Their father lay unconscious in the next room. Kathi didn’t know it then, but as the leader of the pair — always feeling she had to watch over and protect Kari — she would soon witness her best friend lead the way through the uncertainties of living with a disability.
Just before the tree fell, Kari had been sitting at a picnic table holding Tater. Twenty minutes earlier she had been feeding several of the families’ 16 kids. Her father sat next to her, washing breakfast dishes. When her brother yelled, Kari couldn’t move fast enough. When the 16-inch-diameter tree struck both her father and her, Tater popped out of her arms. The tree collapsed Kari’s lung, broke six ribs off at the sternum and crushed her vertebrae, resulting in a T10 injury. Her father lay unconscious for several days with crushed vertebrae in his neck and back, which eventually healed.
“My sister and I had just taken what would be our last walk together,” says Kari. “Then she asked me to walk with her to the tent. I said I was too tired and sat down with my baby to talk to my dad. Talk about fate and why things happen.”
“I was going to have her come with me to my tent,” says Kathi, “but then I remember thinking, ‘I wish she would just sit down, she never sits down!’ Isn’t that terrible? I just wished she’d just sit down, then look what happened! For a long time I felt like it was my fault.”
Kari knew immediately that she was paralyzed when she couldn’t get up to give her father CPR. But the real devastation came in the hospital as she lay in bed and watched as Tater ran to Kathi, calling her “Mommy,” begging for comfort. That she couldn’t accept.
“Kathi’s baby and my Tater were nine months apart, but they looked identical,” says Kari. “She’d stand there holding one on each hip. But my baby would want to go to her and not me. It got so bad that when my kids came to visit me, Kathi couldn’t come into the room.”
“It was so sad, so hard,” Kathi says. “I’ll never forget the feeling. Tater was so scared of the doctors, the nurses, the hospital bed, the whole works, and he wanted to latch onto me. He just clung to me and I’ll never forget that because Kari wanted him, and he was kicking and screaming. I started bawling. I don’t even want to go back there.”
The guilt and denial became so strong that Kathi began to hide her legs from her sister.
“Shaving, walking, whatever, I didn’t want her to see my legs,” Kathi says. “I wanted it to be comfortable for her. Whenever I walked, I wanted to be behind her to hide my legs.”
Kathi’s denial lasted a few years, as it did with some other family members — they thought Kari would get better and walk again. “My whole reaction was: We’re going to figure it out, you’re going to be OK, we’ll talk to every doctor in the country, we’ll get on the Internet, and you will walk again,” Kathi says. “Boy, were we in denial. We were checking into things for years. We did all this stuff, but the doctors kept telling us no. It was the hardest thing in my life to accept.
“Then, after a couple years, I felt like it was always, ‘Kari, Kari, go help her.’ You get to the point of ‘Get it yourself, do it yourself,’” Kathi admits. “Then I got to: What about what we went through, it’s not just you, it didn’t just happen to you, look at the rest of us … we had a lot of heart-to-hearts.”
The whole family is close-knit and athletic, and they did everything together: bowling, camping, volleyball, dancing. The twins describe their siblings as their best friends. They have one brother, Kevin, 13 months older, and two sisters, Kristy and Kelly Marie, who are four and 12 years younger, respectively. Kathi says at the time of the accident, her family was planning a 100th birthday party for their grandfather, who died in his sleep the evening he was told of his son-in-law’s and granddaughter’s injuries. The girls’ mother, Jan, had to bury her father as her husband and daughter fought for their lives — Kathi said she couldn’t attend the funeral and stayed by her sister’s side. She says Kari’s SCI affected everything the family did together and bluntly describes the grief they experienced: “We all had feelings, all the stuff we sacrificed and went through,” she says. “I kind of went through the feeling of ‘You owe me.’ Then it became OK, we’ll get through this, but it took a couple of years.”
Because they are so aware of one another, Kari knew the attention she got made Kathi jealous, yet tried to protect her from it: “It would bother me, and I’d try to bring her into the conversation or situation, ‘What about Kathi?’ All of our family but Kathi and Kelly Marie live in Watertown. If we’d be doing something, I’d be like ‘I wonder where Kathi is?’ I tried to help her get over that whole jealousy thing. I think it’s gotten better over the years. It was prevalent at first, it was new to our environment.”
While Kari recuperated in the hospital for six weeks, Kathi tended their six children, all under eight at the time: Kari’s four boys — Adam, Jace, Brady and Tate; and Kathi’s two children, Travis and Riley.
“My husband and mom and dad helped a lot, but my twin was there with me throughout the first two weeks,” Kari says. “When I went to Colorado [Craig Hospital] for rehab, everyone took turns to come see me. I was told I’d be there for two to four months, but I got done in six weeks. The driving force was my kids.”
At Craig Hospital the family rented a nearby hotel room where Kathi spent a portion of the summer to be with Kari.
When Kathi first walked into the rehab facility, she was incredulous. It had steps and what she calls a “get it yourself” attitude — one that she now realizes begets positive results. Her protective nature took over. She remembers weeks in the bathroom with her twin bawling and crying, trying to learn how to cath herself. “When I was in rehab, Kathi became all involved with it and was right in there with me. We were inseparable,” Kari says. “She even borrowed a wheelchair and learned how to use it along with me.”
“We worked together,” Kathi says. “I went on a Hobie Cat with her, we played street hockey in wheelchairs, we learned how to jump curbs. We learned how to transfer.” To this day Kathi doesn’t understand why she felt compelled to do everything that her twin sister did, but Kari says that Kathi’s support was the main reason she recovered and got through rehab as quickly as she did, and without much depression.
“She was always there. Kathi helped me keep it normal. She would always ask for an extra chair, just to see what it was all like for me. It was awesome. But the big part of my rehab wasn’t in Colorado, it was back home in my own setting. It’s like, you were somebody and you came back as Miss Wheelchair Person.”
Think and Act as One
The sisters talk about going off to college as their first “divorce,” their marriages as their second divorce, and the SCI as a glitch in their lives. After cheerleading together in high school, Kathi went off to a four-year college and Kari went to a local two-year college. When the twins started dating their last boyfriends, the four did so much together that the two men, Jerry Krumweide and Kelly Nordgaard, became best friends and roommates before marrying the twins.
The twins talk about their similarities and offer the usual “twindom” stories: unknowingly buying the same birthday cards for each other, finding out they’ve prepared the same meals for dinner or meeting wearing the same clothes. As with most identical twins, they tricked people in their younger days, and also after Kari’s SCI: “I went to visit a basketball game for Kathi’s son,” Kari says. “I rolled in with her but she was behind me and one of the kids said to my godson, ‘What happened to your mom!?’ Or once at church, a mom told me that her little girl saw Kathi and said ‘Mom, it’s a miracle!’”
Because the twins look so similar, Kari sometimes still feels pangs when she sees Kathi walking around or out on the dance floor.
“The first time our group went to our local bar, everybody was getting used to my being in a chair,” Kari says. “It got time where everyone got up to dance. Anybody could dance, but if Kathi got out to dance, it killed me. When she danced, that was me up there, that’s what I used to look like. That’s me … and I’m not doing it! “I felt a sad sense of loss and jealousy. I wasn’t jealous of her but of what I wanted to do and now can’t. Sometimes it still kills me.”
Now, though, Kari dances in her chair. For slow dances her husband sits on her lap facing her. Once in a while, the whole group of family and friends do what they call “the chair dance.” Everyone takes a sitting chair out to the dance floor to dance with Kari.
At the beach, Kathi rearranges pieces of wood so Kari can get her chair down to shore, or they’ll drive as close as possible for access to other hard-to-get areas. Kari says more than once she’s hopped into the driver seat and her sister has hopped into the passenger seat, forgetting to put the wheelchair in the trunk.
“Everything’s just a little bit different than it used to be,” Kathi says. “It’s been so long, but everything is back to normal.”
“Her injury actually ended up being a plus,” Kathi says. “Kari started hearing about all these opportunities and became a spokeswoman for a bladder-control product. We went on business trips together and had the best times ever. It was so nice to see her having fun, being out in the business world and doing her thing after she had all this stuff happen to her. She’s a wonderful spokeswoman. She was in her realm and this is where she needed to be.”
Kari gives a yearly talk at the school where Kathi teaches. At one speech to an auditorium full of students, the twins came out on stage in wheelchairs, shooting baskets, and did a shtick telling each other to stand up. It broke the ice for the kids to learn about people who use wheelchairs, and acceptance.
“I tell them how life is about choice,” says Kari, who now works part time as a bank teller. “The only thing you have in this world is your choice. You can choose to live, you can choose to die or you can choose to lie in bed all day. You can choose to be angry, happy or sad. I’ve learned along the way that the only true control you have is how you choose to act,” she adds. “I tell the school kids that having a disability is like playing a game of cards. You have no choice in what cards are being dealt, but you do have choice in how you’re going to play them.”
Twins: Under a Microscope
“Identical twins provide us with a natural experiment or comparison. You have the same genes — identical people — yet something can happen to one and not the other. You can look at the health and psychological effects by comparing one to the other.”
– Nancy L. Segal, Ph.D., author, professor of developmental psychology and director of the Twin Studies Center at California State University, Fullerton, Calif.
In 1994, New Mobility announced a physiological study on identical twins — one with a spinal cord injury — that researcher Dr. William A. Bauman, director of the Spinal Cord Damage Research Center with the VA Medical Center, Bronx, was to conduct. Soon after, Bauman received a phone call from Kari Krumweide (see page 34), who had an SCI. She and her sister, Kathi, were raised as fraternal twins because of a medical mix-up. She told Bauman they always felt they were identical twins and asked his opinion.
Bauman suspected Kari and Kathi were identicals, and a blood test proved him correct. He paid for their trip to his center for participation in his study. Studying identical twins — clones — allows for a perfect control study. “You have the ability to say: What would my body composition, metabolism or exercise tolerance be if I were not spinal-cord injured?” Bauman explains. “We can come up with more precise answers. We were the first research group to clearly show that bone mass decreases with increasing duration of injury.”
Along with Kari and Kathi, Bauman studied 15 other sets of identical twins. Though he studied them for physiological changes, he observed that when and how someone became disabled or injured dramatically altered the twin relationship.
“I had one pair where the twin was injured between 1 and 2 years of age,” he says. “The nondisabled sister had to grow up with less parental attention and the stigma of having a sister that was spinal-cord injured. She was very angry, so much so that when I dropped them off at the airport, the nondisabled twin wouldn’t even pick up her sister’s bag. It was eye-opening.”
This suggests that twins who become injured at a young age may grow up in antagonistic relationships with their twins. In other cases, nondisabled twins may feel overwhelmingly guilty and shun their disabled twins — or, conversely — become willing to do anything for them.
World-renowned Paralympic wheelchair racer and identical twin Scot Hollonbeck, injured at T11 at age 15, agrees with this observation. “Anyone under the age of 25 just doesn’t have the ability to process it [the injury],” he explains. “They’re not mature enough to accept that life has no guarantees. They don’t have the skill sets to understand or manage the feelings that coincide with a traumatic event. With age, we develop better communication skills, better coping skills, better conflict resolution skills.”
Brothers in Arms Born in the small, rural town of Balstrop, La., Terry Winkler, now 53, quit school when he was 15 and began working odd jobs. At 18 he was working the offshore oil fields of southern Louisiana. One night after work, while Winkler was handling a friend’s .22 Lugar pistol, the gun accidentally went off and the bullet severed his spine.
During Winkler’s hospital stay, his identical-twin brother, Kerry, who quit high school a few months before graduating, tried desperately to bring himself to visit his twin. But at 18, he could not bear the pain of seeing his best friend sick in bed. Within a year, the brothers gradually separated and for 30 years saw each other only a few times a year at their parent’s house. Even now Kerry’s guilt is so strong that he gets choked up when trying to describe his feelings: “I have a lot of regret about that period. Terry was in and out of the hospital a lot at an age when you should be runnin’ and goin’ and buckin’ and snortin’ and kickin’ your heels and doing anything you can get away with. But I could hardly go by there and see him, I couldn’t stand it. I was mad at him being that way and mad about it even happening to him,” he adds. “It’s really hard to try to put it into words right now … I feel like I’m going to cry about it.”
While Terry recuperated, Kerry says nobody comforted him or explained what was going on and what would happen to his twin: “I do not remember anybody coming to comfort me or talk to me about it. … Nobody.”
Kerry moved to Florida and became a successful mechanical contractor. Terry, while learning to live with his disability, became curious about medicine and fascinated with Reader’s Digest anatomy articles. After getting his GED, Terry went on to college, then to Harvard, then to medical school. Now he’s a doctor of physical medicine with a practice in Springfield, Mo.
The brothers describe being close to one another as kids — best friends who played together every day. When they started kindergarten, they spoke a gibberish that nobody could understand, but they understood perfectly. The brothers — 99.99 percent identical — have each been married three times; their third wives are both named Janice. Now they love restoring antique pickup trucks: Terry does the bodywork; Kerry fine-tunes the engines.
They agree that the accident caused a break-up in their relationship but neither can explain why it happened. “It was a very painful time,” Terry says. “I remember many times crying.”
“There were a lot of times I knew something was wrong,” Kerry says. “I’d be hurting in my kidneys and I’d call to find out and they’d say Terry’s in the hospital again, he’s in bad shape.”
When Terry was in third grade, an ear infection caused deafness in his right middle ear. About five years ago, Kerry developed a problem and lost hearing in his right middle ear as well.
Terry says that though he felt abandoned by his brother after the accident, he knows there was no forethought or intent on Kerry’s part: “But why go there? I’m just grateful we’re back together.”
“I’d trade it 100 times if I could,” Kerry says. “I just hated to see him so bad, but I couldn’t be there for him.”
I Will Carry You
Unlike twins who experience disability at a young age, when disability occurs at a later stage, those we spoke with say they were drawn closer to their twin. The nondisabled twin wishes they were the one injured or diagnosed; the twin with the disability claims they couldn’t have survived without the other. Hollonbeck explains this as the “take the bullet” phenomenon.
“Each thinks the other twin wouldn’t be able to handle it,” Hollonbeck says. “Both want to take the bullet for the other guy. But it’s one thing to say I’ll pick the kids up from school. It’s another to say I’ll take a 50-year disability. Nondisabled twins want to take that burden.”
In August 1990, Holly Koester was injured at the T7 level when her SUV flipped over on a temporary road on an Army base in Alabama, where she was stationed. Her mother and sister KC, three years younger, flew down to the hospital. It took some time before Holly’s twin, Joy, arrived from Fort Campbell, Ky.
Holly, the leader of the pair, joined the Army in college and convinced her twin to follow. KC joined the Marines, then one of two brothers joined the Navy. “We tried to talk our other brother into joining the Air Force so we’d have all four services covered, but he wouldn’t,” laughs Holly.
“Growing up, my mom called us ‘the twins’ until doctors told her not to, then she called us ‘the girls,’” Holly says. “When she had KC, we became the girls and KC. After our two brothers were born, we became the girls, the boys and KC.”
Joy says the first time she was separated from her twin was in college: They lived on the same campus in the same dorm, but Joy was on one end, Holly on the other. She says many times they’d meet downstairs wearing the same outfit. They were together so much their roommates became best friends. The sisters were athletic and very competitive with each other, but the minute a third person got involved, the twins sided against them.
“I could beat Holly, but nobody else could,” Joy says. “She could beat me, but nobody else could.”
In the military in Germany, Holly and Joy were stationed across the street from each other. They are so similar in appearance that their soldiers would salute and ask: ‘Are you my lieutenant?’
“I had a platoon sergeant who, before he knew that I had a twin stationed nearby, said to me, ‘Sometimes you are so friendly and sometimes you act like you don’t even know me,’” laughs Joy.
Surrogate Twin Steps In
The twins received marching orders to Desert Shield just prior to Holly’s accident, so it took a while for Joy to finally get permission to see her sister in the hospital. When she walked into the intensive care hospital room at the Cleveland VA, she was devastated.
“She is my best friend and has always taken care of me,” Joy says. “They would only let us spend a couple minutes with her every couple hours. I’d take a warm wet rag and wash her face off, tell her that everything was going to be OK. But we didn’t know what life was going to be after that. It changed everything, our outlook, our priorities.”
When Joy was deployed to Iraq for Desert Storm, Holly described lying in bed wishing her sister was with her — not for herself, but because she knew Joy was in danger. The twins’ mom and KC moved into a rented apartment near the hospital. The girls’ father stayed home and never visited his daughter in the hospital.
“My father never recovered from the accident emotionally,” KC says. “When we found out about it, he immediately said it was his fault because he had convinced Holly to buy a Mustang convertible. We thought Holly flew out of the convertible. When he found out it was her Bronco, he blamed himself for telling her to keep her SUV. He was determined to make it his fault.”
The once-healthy man was the backbone of the family, but his health deteriorated. Younger sister KC stepped in and moved the family from their hometown of Buffalo, N.Y., to be with Holly in Cleveland, Ohio.
“My younger sister and I became close while Joy was over in Desert Storm,” Holly says. “I think Joy became a little jealous or hurt because she couldn’t be as close as before.”
Holly expected to make the military a career. Now she “lives” her career by encouraging her sister to move up in rank. When Joy’s platoon got called up for Operation Enduring Freedom, she asked Holly to stand in line with her as she loaded her soldiers onto the plane to fly them to Iraq.
“The soldiers go through a line of the whole staff. You shake their hands and wish them well,” Holly says. “I was wearing my Army sweat jacket and was in my wheelchair. They knew I was prior military, but my sister let me wish them well with her.”
The first time Joy saw her twin in a wheelchair was at the National Veterans Wheelchair Games in 1991. Holly says that first game changed everyone’s point of view: “No longer was it ‘poor Holly, she’s not going to be able to do sports,’” she says.
“It was really hard to watch her struggle and do it, but when she finished, it was such a sense of accomplishment,” Joy says. “But watching her go through it was tearing my heart up.
“When she’s hurting, I can tell that I need to give her a call because something may not be right,” Joy says. “I have no idea why, I just feel it … she has the same feeling and knows when to call me.”
Now Holly volunteers with the Paralyzed Veterans of America as sports director and is on the board for the Buckeye chapter. She receives a pension from the VA and works as a substitute schoolteacher — “just for fun money, so I can race.”
Holly lives 3 miles from KC’s accounting office and brings her “surrogate twin” dinner during tax season. Joy lives in Indiana and is in the reserves. Living in different states, the twins only see each other during holidays, special events or when Holly goes through Indiana for a race. They call each other once a week. “Just knowing my sister is still with me is the main thing,” Holly says. “I can’t think about my life without Joy.”
Paralympic athlete Scot Hollonbeck, left, raced — and beat — his nondisabled twin, Sean, at the Shepherd Center Peachtree 10K.
Holly and Joy both joined the military while in college.
Brothers and Husbands
Last fall at the Muscular Dystrophy Association Awareness conference in Minneapolis, Jerry Bolser was walking with a cane — a more deliberate gait than that of his twin, Jay. On the way to their cars, they stopped and hugged for a long time.
Disability is new to them and their family: During the past four years, their father was diagnosed with Alzheimer’s and moved into an assisted living home, and Jerry began having slowed speech and problems swallowing. He’d begun to lose his balance and fall a lot. Now he has a pending diagnosis of primary lateral sclerosis.
PLS is a neurodegenerative disorder that is more rare than but similar to ALS — Lou Gehrig’s disease. There is no direct evidence of a specific gene or single environmental factor that causes the majority of PLS cases. In rare cases like Jerry’s, it can be caused by a specific gene mutation. PLS progressively causes muscle stiffness and weakness, but not as severe as ALS. “I first noticed in 2002 that my speech was slowing when I was reading to my kids,” Jerry says. “I was slow to seek medical answers because I didn’t know what to expect and was a little scared.”
Three’s Company …
While growing up, the twins took long bike trips, scuba dived, sailed, skied and played sports together. As a family, they were part of a camper trailer club where Jerry met his wife, Lisa, and her family. She was 7 when the twins started hanging with her older brother; when she was 16, she and Jerry fell in love. They married seven years later and now have two sons — Aaron, 15, Colin, 12 — and a daughter, Lauren, 9.
“It has always been Jerry, Lisa and Jay,” says Jay. “I’ve got a relationship with Jerry that a lot of married couples would be jealous about. In fact, my ex-wife had problems with it. She was threatened that my brother and his wife and I were so close.”
“The four of us were really close,” Lisa says. “Then one night I got this call and Jay’s wife was reaming me from one end to the other, blaming me for being the third person. I think she thought Jay and I were having an affair.” At the time, Lisa had been calling Jay to keep him informed of Jerry’s progressive symptoms, which worried the couple.
Since then, Lisa has seen the brothers grow closer, with Jay becoming more aware of Jerry’s disability. When she saw that Jerry was starting to isolate himself, she asked Jay to step in. Now the twins, who have an older brother and sister, are finding new ways to spend time together: shopping for camping gear, upgrading Jerry’s house for accessibility or spending weekends at their brother’s cabin.
“I’ve always been the protective one,” Jay says. “I was with Jerry when he used his wheelchair the first time, for shopping. I felt even more protective than usual and became aware of how he becomes invisible to people. But seeing his mobility and his comfort makes it easier for me.”
Both Jay and Lisa worry about Jerry’s depression and anger and how the kids are experiencing the changes in their father. At Christmas, Jerry and his oldest son had a blowout that is unresolved. His son didn’t want Jerry to chaperone at a party, worried that Jerry might fall on the hardwood floors.
“They went around and around. I know my son is embarrassed but mostly worried about his dad,” Lisa says. “I’d never seen that much rage in Jerry before.”
The twins have always been best friends, always there for each other. “I’m unsure how much closer we could get,” says Jay. “I want to help him in any way I can to enjoy and do whatever we can that’s fun.” Jay plans on having Jerry’s kids over for more weekend visits.
“Jay has said he wishes it was him who got this,” Jerry says. “I say, ‘No, you don’t want this.’”
“It’s totally unfair, I don’t have a family, I don’t have three kids,” Jay says.
The twins’ tight bond is different than Jerry has with his spouse. “Jay and I have been together since day one,” Jerry says. “He’s willing to help, but it’s my wife who has pulled me through the tough times. I’m with her more. She’s the one who’s seen me frustrated at the lack of balance and whatnot.”
But Jay empathizes with Lisa, noting her struggle with Jerry’s symptoms and his depression: “She’s losing part of her partner. We all are. But she lives with it day to day. I don’t. I suppose this whole life in general is a stop/start: one step forward, two steps back — and it just keeps going on.”