Living Through the Sting of Disability
By Richard Holicky | New Mobility Magazine
Does the sting of injury or disability — that twinge of anger, regret or self-pity over what’s been lost — ever go away? A conversation with a friend left me pondering that very question. I realized only a fool would declare himself sting-free, though for me, after 30 years it’s rarely more than a twinge. But I wondered how others felt and whether there are things we can do to help the sting out the door. Most of us weather the initial storms following injury, but do we ever truly get over all we’ve lost? Is that even possible? And if it is, how long can we expect to wait for that healing to happen? What helps ease the sting and/or speed the process along? I spoke with other wheelchair users to see what they think and to learn from their experiences.
Face it Head On
“I don’t think the pain ever really goes away. It may not take up as much real estate, and it may decrease, but go away? Not really,” says Minna Hong, 55. Twenty years ago she was injured at T12-L1 in an automobile accident that also took the life of her husband, the father of her two young children.
The sting still revisits her in small ways almost every morning and can return big-time with something major, like a broken hip. She suggests people manage the sting, so as not to be managed by it. Hong credits taking a full-time job 18 months after her accident as being very beneficial.
“Work gave me structure, purpose, meaning, a more positive identity,” she says. The nature of her job as the SCI peer support coordinator at Shepherd Center — daily interaction with inpatients and wheelchair users in the community — was especially helpful, as it provided a constant reminder of how far she had come. “I couldn’t just dwell on the injury or compare myself to what others were doing. That can make your world very small. You must participate.”
Therapy was also beneficial, says Hong, noting, “If my arm was bleeding badly, I’d go to a hospital; if my heart’s hurting, I’ll see a therapist.” Hong says it required work getting used to this new life, this new skin. It took work to rebuild self-esteem, to be her true self and recognize that everyone has value and worth as they are. Now retired, she left “the nest of Shepherd center with all the lessons I have learned and applied them elsewhere.”
Hong says facing the sting head on is key. “Rather than denying it, I’ve learned that it’s important to acknowledge that this sucks. I’m gentler with myself regarding my ‘predicaments’ and have developed the grace to be gentle with myself asking for help or taking short cuts rather than dwelling on it or comparing myself to what my friends are doing.”
Words of Wisdom: “How you live is important. Be your true self. Participate and be in the community.”
It Never Goes Away
“Maybe the sting of being disabled goes away for some people, but not for me,” says Hank Stampler. “It’s just always there. For me, the sting of becoming disabled is different than the sting of being disabled.” Stampler, 44, who became a wheelchair user following a spinal infection 14 years ago, sees himself as a work in progress. “Bad days can bring the sting back to me, but I’m learning that’s when I need to reengage, get out and do something.”
Prior to the infection, Stampler was a chemist working in a lab. Mixing chemicals with quad hands wasn’t practical, so he became a stay-at-home parent to his two young children. He muses moving past the sting “probably means getting back into life, staying busy with activities not related to disability, finding some way of insulating disability so it’s not interfering with what I want to do.
“I think to drown out the sting you have to get so occupied with life that you’re too busy to think about it,” he says. He’s quick to add that he’s not there yet and still struggles at times.
After a few years of learning to be more independent, he found he had too much time on his hands. “Disability creates so much time to fill. I was parenting two young children, but kids grow up and leave. I didn’t plan for that.”
Getting involved with adaptive sports, working out and volunteering with his local rehab center’s peer mentor program helped him feel more positive. Connecting with other wheelchair users who saw disability as a new life, he began to see what he needed to do to get where he wanted to be.
“I let too much time pass raising my kids before volunteering, and not enough time thinking about what I wanted to do afterwards,” he says. “I’m definitely more engaged in life since I began working out. I’ve also found volunteering is a good way to fill time and build up some self-esteem. If people asked me for advice, I’d tell them to get back to work as quickly as possible or find some meaningful activity.
Work is an issue for me because the skills I have [in the lab] are not transferable.”
Stampler also emphasizes the importance of a strong support group. “Being surrounded by positive people also helps. Solid relationships are so important, and they and need to be nourished.”
Words of Wisdom: “It’s important to say yes to opportunities. When we say no to them, fewer come our way.”
The Value of Letting Go
The greatest gift Regan Linton ever gave herself was learning to let go of her pre-injury self.
“Our trauma is with us every day, and the sting is part of that trauma,” says Regan Linton. A NEW MOBILITY contributor and the artistic director of Phamaly Theatre Company in Denver, Colorado, Linton joined the SCI club in 2002, the result of an accident that made her a T4 paraplegic. “The injury will always color our reality. Disability’s a cyclical experience, popping up in different situations … it’s like losing a loved one, but in some ways it’s even worse. With the injury, we’re facing ourselves and our vulnerability every day, and every challenge we deal with reminds us of all that’s lost and changed.”
Linton was injured while in college and needed time to figure out her way forward. “My biggest mistake was trying to hold on to what I’d lost, trying to be what I was. The greatest gift I gave myself — what allowed me to move forward — was letting go. I needed to feel the pain, to just say ‘fuck it!’ and start baby stepping, doing a complete overhaul of who I was.”
At the same time, she found strength in her own character traits. “My sense of humor, cussing and fearlessness helped me the most,” she says.
Linton surrounded herself with people who could relate to not fitting the “normal” mold and who would openly and honestly share feelings. “It took at least three years before I began making new memories,” she says. “I learned that the sting definitely decreases and it doesn’t have to define my life. It’s just one aspect of who I am.”
Instead of fighting the sting, Linton worked to make meaning and find purpose from it. “A life of joy, love, humor, awesome experiences and extraordinary things is still totally possible,” she says. “I’m never going to thank the universe for this, but I love my life, despite the occasional shitty day. It reminds me not to take the good days for granted.”
Words of Wisdom: “Do what they teach you in rehab! That will prevent a lot of the doldrums from coming back. … Mostly, just keep laughing and moving!”
Strength in Others
“The sting lessens with time, but never really disappears,” says Roanne Kuenzler. Now 64, Kuenzler has lived with a T12 injury for 41 years. Following a long career spanning many jobs in the legal and sports worlds, she retired in 2005 and splits her time between Denver and Arizona.
Family helps lessen “the sting” for Roanne Kuenzler.
What has she learned? “When I was injured, I knew I had a choice of either accepting and adapting to this, or fighting reality. I thought it was easier to just adapt and move on. My goal was to get back as close as possible to the life I had before injury.”
Kuenzler relied on the people around her. “Family and work helped immensely, as did attitude,” she says. “I learned that I was much stronger than I thought, to focus on possibilities rather than losses, and to find something to care about and look forward to.”
She also found satisfaction in adaptive sports. She was on the U.S. Disabled Ski Team in 1984 and 1986, took part in numerous marathons, including Boston, and played wheelchair tennis. But she tore her rotator cuff in 2004 and retired on disability in 2005.
As important as it is to nurture your passions, life has shown Kuenzler that sometimes enough is enough. “I try to cut myself some slack and do what has to be done but leave until tomorrow what can wait and rest when I need it,” she says. “I find this is more important the older I get.”
Words of Wisdom: “Establish and maintain relationships, especially with little kids or animals. They’re like mirrors, they reflect back to you what they see from you.”
Keep It In Perspective
“Even though I went through the normal grief cycle, I doubt the sting ever really goes away, because the disability is just always there,” says Jason Regier, a C5-6 quad. Between serving as the head coach of Denver’s wheelchair rugby team and his work as a professional speaker and consultant, the 44-year-old, three-time Paralympian medal winner has come a long way since he was injured 22 years ago.
“My first year was monumental. I didn’t know what I didn’t know,” he says. “The next few years gave me some glimmers of good — mastering a task, a good talk with a friend. By five years, the disability was my new normal. I think we’re always trying to figure out who we are.”
His early struggles coping with the sting included a bit of denial and acting. “I might have talked a good game, telling friends, family and myself that things were good and I was making progress, but I realized I was depressed and my situation sucked.” His saving grace was curiosity: “Despite my situation, it was still an amazing world to live in, and I knew I’d be foolish not to be part of it.
Rugby expanded Jason Regier’s world.
“I was fortunate to have so many positives in my life. My family was very supportive and I lived in Denver, where I did my rehab. I had lots of friends here. I had things to hold onto.”
Following injury, rugby became his focus. “Rugby really expanded my world. I got to travel internationally and gain a broader perspective. I recognized how privileged I was as a white male in this country. I realized my situation wasn’t terrible and that work was possible. Without that something,” he says, “the injury can eat at you.”
Seeing the world while traveling for rugby also had a profound impact. “Travel opened my eyes to racism and places where people with disabilities aren’t even fourth-class citizens. Disability is always humbling, but I realized I was better off in a chair than most nondisabled people in the world. It all helped me focus on the positives.”
He knows his persistence has helped him come a long way, but the sting still creeps in. “Back in rehab even small steps like brushing my teeth could provide some forward traction. Now bad days seem to happen when I’m alone, dealing with the same stuff over and over. That’s when I have to get something positive going to not get too far down.”’
Words of Wisdom: “Things aren’t good or bad. They might be opportunities. Early on, explain to family and friends how you feel, don’t make them guess.”
Researchers and doctors have a more official name for keeping the sting at bay — they call it post-traumatic growth. Theories hold that 30-70 percent of people experiencing trauma find ways to create positive experiences after trauma. How? By paying attention to five key areas: relating to others, embracing new possibilities, personal strength, spiritual change and appreciation for life.
What’s apparent from the people we spoke with is that the only way past disability is through it. Their stories reveal the way to beat the sting of disability is to feel the pain, get past the denial, accept, adapt to and embrace this new life with the same or greater gusto than before. Everyone in this group is adapting, finding new things to focus on and saying yes to opportunities. It hasn’t been easy for any of them. It’s clear the sting is hard, if not impossible, to shake. But by taking chances, having adventures and above all getting involved with people and with life, it can be tamed.
To paraphrase the words of wisdom shared by this impressive group: Be in the world. Be part of the community, be with people, understand and appreciate what you have, be brave, take chances and live life as a verb — by doing!