Why would anyone want to celebrate the anniversary of their becoming paralyzed? There may be as many reasons as there are causes of spinal cord injury, but surprisingly, a large percentage of people with SCI do find ways to celebrate, or at least observe, remember and reflect. A recent brief NM newsletter survey yielded some interesting results. Out of 94 readers who responded, 65 percent said that marking their SCI anniversary has become a regular event. Ages of survey participants ranged from 23 to 80, and number of years since onset of paralysis ranged from one to 66. Most importantly, a majority of those who said they marked their SCI anniversary regularly also said it has been helpful to them.
But why? What accounts for such a significant number of SCI survivors’ positive attitudes about a life-changing event that began as a catastrophe? A team of researchers from the psychology department at the University of North Carolina, Chapel Hill, has put forth a theory known as Posttraumatic Growth, which explains such counterintuitive behavior. The simplified version is that facing trauma and surviving personal catastrophe can provide us with opportunities to appreciate life and be grateful for what we have, even if it takes years of struggle, frustration, and periods of depression. In fact, the greater the struggle, the more fulfilling the ultimate reward can be.
Our survey disclosed a number of ways of observing SCI anniversaries, from all-out parties to recounting memories with close friends and family, or simply by remembering and reflecting when alone. One thing links all of the stories: The SCI experience cannot be separated from the date it happened. No one ever forgets that day.
Here are 10 stories of SCI survivors, each with a unique perspective, that provide real-life glimpses into just how people recover and grow following a spinal cord injury.
Fell from a balcony
15 years ago:
“I get my own holiday, it’s awesome.”
“The day before my senior year at college I was climbing on an apartment balcony, lost my grip, fell backwards, and landed on my head.” After rehab at Craig Hospital in Denver, she moved to a small group home in Los Angeles. “As a C4-7 quad, I wanted to be independent but was only there for 45 days. I was not good at having caregivers tell me what to do, and there were weird dietary rules. This was not independence.”
So she moved back to her childhood home in San Luis Obispo, California, but ran up against the cultural roadblock that often awaits newbies with SCI: “Others couldn’t see I was the same person. My mom wanted me to stay home so she could take care of me, but I wanted to go back to school. I wanted to do more. Prior to my injury I had lived in Chicago and worked at Bloomingdale’s. I didn’t want to get stuck in a small town. I wanted to prove to myself and others that I could do this, I could handle my future as a quad.” She went back to college and eventually earned her master’s degree in public health at the University of North Carolina, Chapel Hill.
“I’m really glad that in that first year I had the drive to move forward,” she says, “because you can get stuck being too comfortable. It’s part of being an adult, someone who goes and takes chances.”
Currently she is in between jobs, living in Portland, networking, volunteering, writing a newsletter and running a Facebook page for Oregon Public Health Association. She also enjoys the time she spends with friends, especially on her special day: “On my anniversary I’ve always gone out with friends, celebrating being alive, feeling grateful and appreciative. Life is short, and it’s my day. I’ve worn a tiara or two on that night. On the first one I wore a feathered boa. The main thing is to enjoy life.”
But what about when life throws you a curve?
“Even when things aren’t exactly what I want, I use the anniversary to look back and take stock and go forward.” It’s the day she gets to feel proud of herself, she says. “I’m stronger now, my confidence better, my friendships deeper.”
Football injury 11 years ago:
“At the time of my injury, it had always been a dream of mine to play in the NFL. Now I try to look on the bright side.”
Anniversary date: April 14
Tyson Gentry was injured on Good Friday in 2006 when a teammate tackled him during an Ohio State University spring football practice, becoming an instant C4-5 quad at 20. Besides having to give up his NFL dream, he worried about his ability to be a husband and father. “I had always looked forward to getting married and starting a family, but if I was going to be in a chair the rest of my life, what kind of woman would want me?”
In his senior year, 2009, he ended up sitting next to a girl who was late the first day and had to sit in the back at the wheelchair accessible desk. “We hit it off right away. Megan was so comfortable around me, I was amazed at how easy it was to be around her and not be worried about everything that came with being in a wheelchair. We started dating, were engaged a couple years later and married two years after that.”
Next came the dream of having a family. “I was really worried if my sperm would be healthy enough to conceive. On top of that, if we would have to do in vitro, it would be really expensive and complicated.” Fortunately, his sperm passed muster and Megan got pregnant after insemination.
Gentry is quick to credit their good fortune to a higher power: “The fact that Adam was born on Easter Sunday says it all. I feel like he was a gift from God.” Out of gratefulness, in 2014 Tyson and Megan created the New Perspective Foundation to provide financial support for travel expenses for families and friends of newly injured SCI survivors.
Today Gentry sees his own injury in a positive light. “I wouldn’t have met Megan if I hadn’t been injured. I consider her and my son the biggest blessings in my life.” Now they are trying for number two.
It’s easy to see why his SCI anniversary has always been an important day for him, and he has a favorite: “Megan, her friend Cassie, my mom, father-in-law and mother-in-law surprised me with a ninth anniversary cake,” he says, “complete with wheelchair symbols. Good things can come out of bad situations.”
Gunshot wound 5 years ago:
“The day he shot me turned out to be the day I was saved from him.”
Anniversary date: July 3
“About four years into our relationship my boyfriend started using meth and things got really violent. There were many breakups and finally I said I’m done.” He started stalking her and one day saw her driving. “He clipped the rear end of my car, pulled over, and came up to my window. I stomped on the gas and he shot me. I was instantly paralyzed, so my car coasted downhill, I lost consciousness and drove through a house.”
He followed her, pulled her out of the car, and tried to make her stand up. “He said he was sorry, why did I make him do this? When the cops came, he lied and said he was with me in the car and someone came up and tried to rob me.”
When she was intubated, with her lungs collapsed, he showed up at the hospital again, where the cops arrested him on outstanding warrants for knocking her teeth out the year before. Unable to talk, she was able to write the first letter of his name when questioned, and the cops made the connection instantly.
“It was so bizarre. The moment I woke up in the hospital, I knew I was free of him, and I was OK with it” [what happened]. “Don’t get me wrong, I do get down and I’m in a wheelchair and all [C7-8 SCI], but I have grown so much. My relationships with friends and family have gotten better now that he’s not around, and I have come to know that I’m a strong person. And if this can’t hold me back, nothing will.”
In the hospital the chaplain had read her the last rites. “Now I call the anniversary of my injury my re-birth day. I got a second chance. The day he shot me turned out to be the day I was saved from him.”
She’s now a full-time community college student working on her associate’s degree, hoping to help others who find themselves trapped in abusive relationships.
Run over by a car when on his motorcycle four years ago:
“They told my wife I might not make it, to prepare herself for the worst.”
Anniversary date: July 11
On the very first anniversary of the motorcycle accident where he sustained his SCI, John Casey threw a party to remember: “We invited the entire family and friends, about 100 people, and celebrated “The First Year Survival Anniversary Party.”
Most SCIs result from traumatic vehicle crashes. What was so momentous about his?
“I was home, on my motorcycle, going to ride to a car show, just a short trip. My 3-year-old daughter came out to see me and gave me a hug and a kiss. The last thing I remember is seeing her in that new, pretty dress.”
On the ride to the car show an oncoming car turned in front of him and ran right over him, paralyzing him at the T11 level. He lay unconscious in the hospital with 20 broken ribs, both lungs punctured and a traumatic brain injury. On his 11th comatose day he went into cardiac arrest. In a last ditch effort, doctors induced hypothermia in what is known as the arctic sun treatment. They redirected his blood flow in an effort to save his brain function, organs, and his life — and they told his wife that even if he made it, his brain function was in doubt.
“When I woke up 40 days after being run over, my daughter’s photo was on the wall. She was wearing the same dress she wore that day. I knew I had so much to live for, for my beautiful wife, Christina, and our wonderful twins, Marlena and Johnny. Now I celebrate life every July 11. I am a very fortunate person.’”
Casey’s gratefulness can be seen in what he has accomplished in just four years. He joined a small local support group, became chairman of the board and spearheaded a fundraising campaign that raised over $100,000 last year. It is now the Rochester Spinal Association, a United Spinal chapter. He retired from his position as a successful construction executive and devotes his time and resources to the chapter.
“I was a workaholic in my previous life. I would still probably be a workaholic. But my injury has forced me to enjoy my life. And I am loving it.”
Surgery went bad just one year ago:
“It’s always in the back of my head that this is too difficult. But I do see signs of improvement.”
Anniversary date: June 13
Alex Aitken was looking forward to retiring last year when she underwent spinal fusion surgery to relieve pain from scoliosis. All seemed much improved when she was discharged. But two weeks later her osteoporotic T2 vertebra instantly fractured and her legs went out from under her.
Back to the hospital for repairs. But her spinal cord had been damaged and she was going downhill. She developed a UTI, then things went from bad to worse. “I got paranoid, lost my mind, started hallucinating and had no idea what was going on,” she says. Her insurance would only cover uninterrupted circumstances, so they cut her rehab short and she ended up in a nursing home for six weeks.
Once home, she ran into a common problem that often faces people with new SCIs — difficulty getting around. “I couldn’t even get out of the house on my own,” she says. She has to hire personal care attendants out of her own pocket. What bothers her most is the tremendous letdown she has experienced from looking forward to a leisurely retirement to dealing with paralysis every day.
But something inside her is beginning to fight back and good things are starting to happen. She went online, became a member of United Spinal and also found useful information on the Reeve Foundation website. She says her strength is coming back and she wants to find a way to access private rehab to make up for what her insurance wouldn’t provide. She thinks a power assist chair might help. A volunteer group came and built a ramp and deck onto her house. “I was astonished,” she says.
Now she is just one year post-injury. Did she celebrate her first anniversary?
“I invited a friend over to watch the same movie we were watching on the day my legs went out from under me. You’ll laugh when I tell you what it was,” she says … “an old Vincent Price horror movie called The Tingler. About a creature that lives in your spine and kills you.”
Now she is making a list of things that are getting better, and it’s growing, day by day.
Car accident 23 years ago:
“I make cupcakes on my anniversary and celebrate it as a new birthdate.”
Anniversary date: March 3
At 20, Elizabeth Shanks, from Niles, Ohio, was riding with a friend when the car in front of them braked suddenly. They skidded on black ice, her friend lost control and hit a telephone pole. Following emergency surgery for a T12 SCI and rehab, she was discharged to her home, where she lived with her mother and stepdad.
Always an outdoorsy girl, she found that wearing a back brace and sitting inside all day did not suit her. “It took a while to get a ramp built and I didn’t have a car or know how to drive with hand controls. The ambulette driver who drove me to outpatient rehab had to come inside and help me out.”
Over the next two years she took college classes and a secretarial program. Then she met Jack. “He came walking up wearing a cowboy hat, boots and a duster.” Not being shy (she rode a hot pink wheelchair), she asked him out. Twenty years later, they are still together, 16 years married.
At 30, she went off the pill, thinking it was time to start a family, but nothing happened. “I was starting to think I might not be able to have a baby.” Then — surprise! — she conceived when she was 37. All went well until her eighth month, when she got a UTI. Docs treated it but it returned and spread to her kidney. Then she became septic. “If I had known how much danger I was in, I would have been very worried.”
Doctors did a C-section and baby Justin entered the world after seven years of trying. On her next SCI anniversary following his birthday, she decided to go beyond her usual celebration routine of making cupcakes at home. “We went out to eat and I had my favorite seafood dinner,” she says.
Today, not only is she a wife, a mom, and an 18-year employee of Hillside Rehabilitation Hospital, she is still that country girl. “I drive an Arctic Cat four-wheeler, hunt deer, pheasant, turkey and duck, and ride horses for therapy.” She also likes to go handcycling with Justin. When March 3 rolls around, she’ll be busy in the kitchen making cupcakes. And maybe have a shot or two of Wild Turkey. “I’m lucky to be alive,” she says.
Roadside bomb in Iraq War nine years ago:
“Ever since I made my peace with the Lord, all is OK.”
Anniversary date: February 8
He doesn’t talk about it much, but Wes Hixon lost four of his Army buddies when the bomb went off that day and his spinal cord was injured at T2.
“Oh my gosh, I was brokenhearted, I tried to be positive, but inside I was dying,” he says. Like many others who experience trauma and near-death, he had to battle PTSD. “The problem was not so much drinking, I was just really depressed and sad, thinking about the future, wondering am I going to be like this when I’m 60.”
Then something happened four years after his discharge. “I couldn’t take the weight of the situation any more and was lying in bed. I started reading the Bible and it came alive in me. This feeling came over me and my heart started beating real fast. It was the first time I cried like that, and ever since that moment I’ve been brand new.”
That was five years ago, and although he still has complications from his SCI, he no longer worries about the future.
In late June, when we talked, he was in the hospital with an open wound on his sacrum. Doctors told him an MRI confirmed the wound had involved his bone. They would have to operate. “It isn’t flap surgery. There’re going to go in and clean the area and the bone. I’m getting fluids now. They’ll put me to sleep, but I’m not worried about it.”
His plans after he’s discharged from the hospital? “I’m going to get my permit and drive my truck around and hang out with my older brother.”
And when his anniversary day comes around next February 8, what will he do? “I’m not sure. A couple of years ago we released some balloons just outside my house” — in memory of his fallen brothers. “I’ll be keeping everyone in my prayers, paying my respects. Giving thanks for my life and praying for the guys that I love.”
Fell out of a window 20 years ago:
“A mentor of mine introduced me to the concept of ‘Break Your Neck Day,’ a re-birthing day.”
Anniversary date: October 18
Matt Barkley is looking forward to the 20th anniversary of his becoming a C6-7 quad. This year, October 18 will be a milestone, the halfway point, the day his nondisabled life and his life as a quad will be equal in length. It is an important milestone for SCI survivors.
“The big halfway point,” he says. “From that day forward, I will have spent more time in a wheelchair, a date I can’t ignore. At first the anniversary was depressing, a period of adjustment, accepting my disability and the thought that I would never be like I was before the injury.”
When he was injured at the age of 20 he didn’t want to have a career in anything having to do with disability (marketing was his dream), but he never got to do an internship. He eventually got involved in peer counseling and found that it wasn’t so bad. From there it seemed like a natural evolution to the independent living movement, where he began to enjoy the connections. He worked for the National Council on Independent Living in Washington, D.C. and as an ADA coordinator in Fairfax County, Virginia. But his journey to becoming a truly committed advocate wasn’t complete until he became involved with ADAPT.
As the anniversaries rolled by, sometimes he ignored them, other times he was just too busy to notice. Then one day John Hudson, a mentor of his, introduced him to the concept of calling his anniversary “Break Your Neck Day” — a day of acknowledging how his injury had laid bare a meaningful path for him, a kind of re-birthing. “John was a transportation advocate who took great pictures. The Washington Post did a story on him and ran a photo he had taken that illustrated the stupidity of the term ‘wheelchair bound.’ — he was tied up and bound to his chair.”
This month he and his wife will be celebrating a different milestone, five years of marriage, as well as exploring a new frontier: having children.
Separate vehicle accidents:
“Our anniversaries — they’re the days that made us who we are today.”
Anniversary dates: May 14 (hers) and May 27 (his).
Their email address says volumes: email@example.com. They were married on “Live with Regis and Kathie Lee” 23 years ago.
They met at Mary Free Bed Rehabilitation Hospital in Grand Rapids, Michigan, when she was 30 and he was 28. “I was back in rehab for a ‘tune-up’ and he was new to SCI. I was able to help him learn a few things.” After rehab, they went their separate ways, but their respective spouses, both of them, left them. Ken contacted a physical therapist and got a message to Shelly that he wanted her number. From then on they have been inseparable, but their path as married quads, while rewarding, has not been easy.
Ken had two children from his previous marriage, but they didn’t want to stop there. “We conceived Katherine (named after Kathie Lee) in 1997, but we got lots of flack,” says Shelly. “We even had family move out of state because they disapproved and thought they would have to take care of the baby. We got turned into Child Protective Services before we even got home from the hospital.” But the C5-6 quads, with help from a parenting class at Mary Free and an array of adaptive equipment, did all the parenting themselves. However, when Ken had dual shoulder surgery five years ago, they had to bring in part-time help.
Since 2007, Shelly has loved her role as president of the Ms. Wheelchair America pageant in 31 states. “It has given me purpose and fulfillment.” Both of them also do mentoring at Mary Free Bed.
Every year they celebrate their combined “Happy Quadaversary,” but this year was special. “It was my 30th,” says Shelly. “We got out my halo and showed it to the [now grownup] kids and went through old photos and really remembered what it was like, how we felt back then. These are things we thought our kids would know about, but they didn’t. To them, we’ve always been just mom and dad.”
“I like being part of something that is greater than myself.”
Anniversary date: June 19
I talked with Jose Hernandez just days after his latest anniversary, when he had posted this on Facebook along with a photo of the beach where he sustained his SCI: “22 years ago today I broke my neck at the beach — it’s been a long hard road but I have to keep pushing forward and make everyday better.”
Publically declaring his SCI anniversary like that was a first for Hernandez.
He was just 15 and full of adrenaline when he ran into the surf at Orchard Beach in the Bronx and dived in, instantly becoming a C5-6 quad in 1995. Following rehab at Mount Sinai Hospital, he returned home to live with this mother, brother and sister in a first-floor apartment with limited access.
By 18 he had gotten his high school diploma through a home study program. After moving into his own apartment and getting his associate’s degree from Bronx Community College in 2003, he went on to get a bachelor’s in computer science from St. John’s University.
About three years ago he became involved with the Balance Initiative Program through the New York State Department of Public Health. “It was supposed to be a one-year grant,” he says, “but it only lasted for six months. I was disseminating information to people in nursing homes and helping them get into community-based living. Luckily, the company I was working for saw my value as an employee, so they hired me when the grant ran out.”
This April he took a job with United Spinal Association, but it wasn’t his first contact with United Spinal. He participated in the first Roll on Capitol Hill six years ago. That event turned out to be a huge influence in his life, a milestone that marked his journey of personal growth.
“Up until that time, I didn’t really celebrate my anniversary. It was more like a mourning experience. But after passing the ‘halfway point’ [15 years disabled/15 years nondisabled], I embraced my identity in the disability community.”
Embracing his identity at ROCH turned out to be a profound emotional experience. “I teared up, feeling the value I had both as a person and as a representative for others.” The lesson he took away from that day seemed all the more important because of what he had to go through to learn it: “I like being part of something that is greater than myself.”