As wheelchair users, many of us go through a period of feeling isolated from family, friends, and society. While we can’t always change the way the public views us, we can change the way we respond to negative influences and find peace within ourselves.
Turning to alcohol and drugs was Kenneth Ryno’s denial of choice. When he was 18, Ryno, from Kunkletown, Pa., hopped on a motorcycle after partying and woke up 20 days later as a C6-7 quad. He was told he’d never be able to care for himself, never work, would never father a child and would probably spend the rest of his life in a nursing home. To mask his bitterness, anger, and the blame he felt for ruining his own life, he turned to drinking.
“You can bury all of your feelings with alcohol and substance abuse until someone pisses you off. Then all of those feelings come out,” he says. “I’m a devout Catholic, was an altar boy and have a very strong faith in God, but I was really mad at him — how could he do this to me? In 1991 my daughter was born and I gave up alcohol and drugs. I realized that it was God who kept me here and saved my life … it was the alcohol that put me in the chair.”
He realized his responsibilities to his daughter meant more than trying to hide his anger.
“After I sobered up and got in touch with my inner self, I accepted myself for what I was, paralyzed and in a wheelchair,” Ryno says. “That’s when my life started changing, when I realized I’m going to be doing this for the rest of my life.”
Ryno realized how much energy he was wasting on anger and turned it into positive energy and began to achieve goals he set for himself.
“I’ve worked for almost 20 of my 29 years of being paralyzed. My daughter is now 17 and has never seen her daddy with a drink in his hand.”
Ryno recently married “the most wonderful woman in the world” and graduated with high honors as a medical office assistant. He chooses to live every day to the fullest.
“Some days are great, some days are not so great, and there are some people that can make you feel bad because you can’t do the things you want to do, like when they park in front of a curb cut and it’s your only way up to an entrance,” he says. “That can make me want to stay home. Now, instead of alienating myself from the world, I try to use my experience to open up the world and let people know how their stupidity stops us from doing what we want.
“Every day is a present,” he says. “Every day I wake up and have a new present to open — this is what I live for. Gratitude is attitude and this makes me a much better person — to be more understanding of each day and what it brings.”
An Enlightening Testimony
After 17 years as a registered nurse, Berta Dickerson, of Paducah, Ky., thought she could enlighten those in the medical field after she sustained a C4 SCI in 1991. But she has found it’s more rewarding to share her story with everyone, not just health care professionals.
Experience as a nurse taught Dickerson the “medical way” to relate to people with disabilities, but not how to be compassionate. “Taking care of people’s physical needs was routine,” Dickerson says. “But no book or mentor trained me to deal with the effects of permanent disability. What could I do? I certainly couldn’t heal them, so I did nothing.”
Three months after her accident, her neurosurgeon told her husband, Earl, that Dickerson would be a bedridden vegetable, and that he was too young to be saddled with an invalid wife — he could let her die comfortably. Instead, Earl transferred his wife to Shepherd Center in Atlanta. There she was taken on “outings” where she says people were used to seeing “our kind.”
“But back home, life was different,” she says. “One of my first visitors came while my husband was feeding me lunch and she asked him, ‘Oh, can I feed her?’ Strangers petted me and I was called ‘poor thing’ — but I myself was ignored.”
Dickerson got through her anger and depression by teaching Sunday school. Then she started writing letters to local hospitals and community college nursing programs, offering to speak at classes about SCI and disability. Nobody responded.
“I still see nurses whom I worked with or who had taken care of me,” she says. “They are always amazed at how well I’m doing but never interested in what I have to share.”
A Navy veteran, Dickerson gets her physicals through the VA. “Last week was the first time I got a physician who didn’t ask me to stand up, didn’t ask me to squeeze his hand,” she says. “When we finished, he thanked me for enlightening him.”
When she’s out and about, Dickerson likes to break the ice with curious kids or people by introducing herself. Knowing how much they enjoy technology and machines, she likes to show children how her wheelchair and lift work; when she meets new people, she hands them a copy of her “testimony,” which includes the story of her accident and rehabilitation. At physical therapy, Dickerson encourages her therapists to let the intern students work with her — on their own.
“I want people to be comfortable around persons with disabilities,” Dickerson says. “I want everyone to know that we have a life, and that we are productive.”
The Force Be With You
Michael P. Murphy, 42, from Oconomowoc, Wis., tends to spend a good part of his days at home. Born with spinal muscular atrophy, Murphy has never walked and has used a ventilator since he was 7.
Growing up, Murphy was tutored in his home, and became a “regular fixture in the neighborhood to whom nobody paid extra attention.” He was discouraged from studying military history in college by the “experts,” being told it wasn’t a practical field for someone in his condition. Colleges in the 1980s were leery of accepting a student on a ventilator, so instead Murphy skipped school, eventually authored three novels and became a freelance writer and a sci-fi aficionado.
“The only thing that got kind of tiresome was when people would come up to me in public, grab my hands or pat me on the head, and talk to me like I was 2 years old, usually spewing religious bullshit about how my condition was a ‘gift from the angels’ or some damn thing,” Murphy says. “I still get the ‘little angel’ routine, but at least now with a beard, mustache and a receding hairline, they don’t refer to me as ‘she’ anymore.”
Murphy has a vivid imagination, especially in his writing, and when asked how he handles ignorance regarding his disability, he says, “I just let it bounce off my shields and move on. Anything else is a waste of energy. I’ve never understood the whole ‘inspirational’ thing. People with disabilities going about their lives doesn’t strike me as especially moving. It’s just reality.”
We all have our comfort zones, places where we can move with ease without fear. For some it’s a favorite coffee shop or café where everyone has a familiar face. For Murphy it’s the world of sci-fi.
“Science fiction is my refuge,” he says. “Whenever life gets heavy or just plain boring, all I have to do is open a book or pop in a DVD and go to worlds that value intellect and differences over muscles. I’m no longer able to attend sci-fi conventions, but those weekends were some of the happiest days of my life — because among the nondisabled, we were all equals of the mind.”
Go Away, Mr. Pickle
Judy Finelli overcame feeling alienated by visualizing her depression as a character she could control. After being diagnosed with MS, Finelli, of San Francisco, became depressed from the effects of the disease and from the alienation she felt while out in public.
For 11 years, unable to walk and living in an upstairs apartment, Finelli became isolated. Her husband withdrew into his anger and fear, and her 7-year-old daughter began to spend more time with dad while he chauffeured her to friend’s homes. Feeling trapped and unable to sleep, Finelli fantasized about committing suicide — to “abandon” her no longer perfect body.
The first time Finelli went out in public with her wheelchair was when she and some friends took her daughter to Disneyland. She was shocked at the difference a wheelchair made: She felt she had become invisible, as people would continually bump into her chair without apologizing.
“After, I just wheeled around the apartment, did laundry, went out on the back porch and generally felt sorry for myself,” Finelli says. “Finally, I arrived at the reluctant conclusion that I must find a way to live in this body.”
A healer with whom Finelli was working helped her create a character to visualize her depression and overcome it.
“My character was small, green and shaped like a pickle,” she explains. “I saw this creature as the guiding force behind my suicidal impulses, and little by little, I began to become friendly with him. We would talk. He became less scary, smaller.”
In Finelli’s imagination, as she confronted her depression, Mr. Pickle, once fierce and strong, became sad and ridiculous.
“Eventually he disappeared and I haven’t seen him in years,” she says. “Soon enough, not being able to walk ceased to be a reason to stop living. I grew tired of obsessing about my condition and I now know I am not alone, that there are many people in the world who share my experience and pain.”
For construction contractor, ex-runner and ex-workaholic Joe Monteforte, keeping positive — while sometimes a daily struggle — is now what keeps him strong. You could say he re-learned perseverance from his wife, Linda.
“My strength is my wife. She is so strong, she stays positive and makes sure that if I’m having a down day, I know all the good things in life to look forward to,” says Monteforte. “I watched my son graduate from high school this year, got him off to college, and all our other boys are doing well. There’s so much more to life than material things. They don’t mean anything.”
Monteforte, from New Milford, Pa., was injured at the T10 level in March 2007 when a roller rink he was demolishing collapsed on top of him. The ladder on which he was standing held up part of the roof and saved his life. Now he looks back at his workaholic days before his injury and realizes he didn’t take much time for his family. The Montefortes have four sons, ages 18 to 27. They lost one son, Patrick, 15, who drowned in a snowmobile accident.
“My wife was a wreck when we lost our son, but she kept a positive attitude with strong faith, and through all of it she still took care of the family,” he says. “I’m so thankful to have her in my life. After seeing what she went through and now what I’m putting her through … I really believe it’s harder on the family than it is on us [who are injured or disabled].”
Monteforte is building a new home that will be accessible for him but also for his wife, who is nondisabled. He hasn’t gone back to work full-time yet.
“But I do get out a lot. Wherever my wife goes, she likes to take me — even shopping — it feels good to get out,” he says. “I don’t see a lot of people in wheelchairs where we go. And people will always look at you with pity or sorrow. You just have to go with the flow. I’m going to fall once in a while or have accidents, it’s going to be a part of life and I have to keep accepting it. I keep telling myself, it’s OK, and it gets better and better.”
When Monteforte gets in his “poor me” mode, his wife just needs to say, “Oh, poor me again!” and they start laughing; he knows he can’t dwell on the negatives.
“We’re alive and we’re together. I love her and she loves me,” he says. “Everything around us is immaterial, and as long as we have each other, we can make it through each day. If I have a bad day, she’s my strength, and if she has a bad day, I’m her strength.”
Monteforte describes how his friends have accepted his disability: He tells them to be more humble, to relax and enjoy their families more.
“They think twice about the things they do now,” he says. “We have a positive impact on other people, and it makes you feel good when you see somebody take in what happened to you and turn their lives around.”