S’mores. Sleeping bags in pup tents. Fireside stories and songs. Brave souls going “polar bear” swimming in a freezing lake at dawn. These are the memories I have of going to camp. But the camp I recently attended was different. At this camp, I was surrounded by survivors: stroke and spinal cord injury survivors. The July 2005 Stroke Camp at Chapel Rock Church Conference Center in Prescott, AZ allowed stroke survivors and their caregivers, as well as spinal cord injury survivors, a weekend of rest, relaxation…and play time. Kay Wing, owner and founder of Swan Rehab, which specializes in stroke and brain injury rehabilitation, wanted to host a camp that was “No work, just fun.”
“I teach a week long class at NAU every year for the Physical Therapy students,” says Kay. “We have stroke survivor volunteers for the students to treat. The patients are there all day long, and rotate between various therapeutic activities. Everyone has such a good time that it’s like camp. It made me realize how hopeless a permanent disability can seem to both the survivor and the caregiver. Just the week of this class gave people new hope, a change of scenery, and the caregivers a rest from the constant responsibility. I thought this type of hope needed to be available to a wider community of stroke survivors and their caregivers. Only, I wanted it to be just a fun camp.”
Jim Koeneman, President of Kinetic Muscles and co-sponsor of the event, agrees. “Through Kay Wing and our customers, we became aware of the tremendous need that stroke survivors and their caregivers have for recreational opportunities.” Spinal cord injury survivors were included for the first time after a serendipitous encounter with Amy Rocker, Community Relations Director for the Arizona Spinal Cord Injury Association. The woodsy, rustic atmosphere and hotel-like accommodations offered Camp attendees a multitude of activities to choose from: nature walk, arts and crafts, bingo, yoga, a lecture on fishing, indoor volleyball, and a massage or acupuncture. The group attended a mixer and learned about meteorites from guest speaker John Salza on Friday night; and was allowed to sit in during the Phoenix Boys Choir music rehearsal Saturday morning.
It was here, at this special camp, where I learned what it meant to be a survivor:
1) Change is gonna come. Some of the simplest daily activities we take for granted are the first things a stroke and spinal cord survivor have to re-learn. Not only is the survivor affected, but loved ones are, too. For the first year after his wife, Susan, got home from the hospital, Jack Fuhrer’s daily routine was simply to ‘get through the day’ and observe her daily therapy sessions. “Tending to Susan’s basic needs was hard physical work because she was so profoundly paralyzed,” he states. Chang Bae and his wife, Kim, who were invited to the camp through the American Heart Association, still cope with difficulties like not being able to communicate well and rapidly. And the physical impairment prohibits certain activities that they’re trying hard to get back. Ron and Nancy Wheelen’s 14-year-old daughter is handling the new routine, but is frustrated and tends to be short-tempered at times.
2) It really does pay to have insurance. Insurance companies have gotten a bad rap for years. So much so that a couple of movies have been made to drive the point home that they have a habit of leaving their members twisting in the wind. Like a coin, there’s going to be two sides with insurance companies: the bad and the good. Jack Fuhrer feels he and Susan are among the fortunate few who have had good, hassle-free insurance coverage for a several million dollar illness. They were assigned a “supportive and helpful” case manager courtesy of Cigna. And an uninsured friends’ tragedy a few years earlier caused him to buy long term care insurance. Consequently, there are still a lot of deductibles. Ron Wheelen, whose wife, Nancy, suffered a stroke in a hospital in June 2004, states that “overall, there was $3,000 to $4,000 not covered by insurance. The hospital visit was $500 out of pocket.” Although he didn’t have to pay it, Ron said that the helicopter ride from one hospital to another was almost $12,000. Taxi, please.
3) Remember when?… Family members birthdays. The day my boyfriend popped the question. The day I got married. These are the special occasions I’m going to remember for the rest of my life. For a stroke and spinal cord injury survivor, the day their life changed forever is something they’re not bound to forget. Kim Bae, February 5, 1999; Susan Fuhrer, Sunday June 23, 2002, 9:15 a.m.; Kenny Baker, August 13, 1999; Terrible Tom O’Brien (who’s not terrible at all, but a shameless flirt), Monday May 27, 1996-Memorial Day; Susan Wheelen, June 2, 2004, 6:30 p.m.
4) There’s no such thing as limitations. Just because someone walks with a limp, wears a brace on their leg, or gets around by wheelchair, doesn’t mean they’re completely helpless. Diana Partain is an occupational therapist whose methods of therapy include driving rehabilitation and expressive art. “You don’t have to give up your hobbies or your life after having a stroke,” she says. “You just have to find another way to do them.” And in the words of Terrible Tom O’Brien: “I have two eyes, two nostrils, two arms and two legs. If one doesn’t work, I still have the other one.” Amen.
5) Support, support…and did I mention, support? The dream of seeing my work published has been a goal of mine ever since I started writing in the seventh grade. I not only had to believe it for myself, but I needed to have someone else believe in me, too. Don Price broke his neck and sustained a spinal cord injury in a diving accident in 1982. He was 18-years-old. “It was a difficult adjustment,” he says. “I had great family and friend support, but the best help in adapting to my disability came through peer mentorship–meeting others who had a similar disability, and learning from them. Once I spent time with other quads, I realized that they were out in the community working, playing, dating, driving, traveling and having fun. So I knew I could, too. They supported me; we supported each other.”
6) Celebrate the victories. Sixteen stroke survivors and two spinal cord injury survivors attended the Stroke Camp this year. The most inspirational person I spoke to was the youngest of the group, and was neither one of those. 24-year-old Laurel Murray survived an encounter with a drunk driver. She was pronounced dead at the scene for ten minutes. The doctor’s told her she would never walk again. “What do they know,” she scoffs. The brain damage she suffered is comparable to that of a stroke, her speech is slow and meticulous, her gait is even slower, and she’s determined to do things without help. But she’s walking. So stick THAT in your stethoscope and smoke it, you overpriced, pessimistic doctor!
The best part of this camp was the boys. All of our meals were blessed by the angelic voices of the Phoenix Boys Choir. I still get chills thinking about those young boys, some as young as eight, opening their mouths and hearing this almost supernatural sound emerge. I think about 12-year-old Collin, a member of the choir, who was born with no arms (stumps) and no legs (stumps fitted with suction-cup type prosthetics). And yet he was still wholly accepted by his peers. Those boys will grow up and never look twice at someone with a physical disability because of Collin. Get’em while they’re young, that’s what I say.
I’ve been in the medical field for several years now, but only in the form of a desk job. As a medical biller, I sit at a computer all day and register members. I have no contact with the member and have never had much contact with the physically disabled. After spending a day and a half with these eighteen survivors, I am simultaneously humbled and inspired. My life, my daily complaints, seem so small compared to what they’ve suffered and what they still struggle to accomplish. For a moment in time, I was allowed a sneak peek into their world. We rested, we relaxed, we had fun. We have been renewed. I recently attended a camp. At this camp, I was surrounded by survivors.
~ On average, every 45 seconds someone in the United States has a stroke.
~ Stroke is our nation’s No. 3 killer and a leading cause of severe, long-term disability.
~ African-Americans, American Indians or Alaska Natives, and Mexican Americans have a higher than average risk of getting a stroke.
~ Recent studies indicate that the risk of stroke may be higher in women during pregnancy and the six weeks following childbirth.
~ Each year, about 700,000 people experience a new or recurrent stroke. About 500,000 are first attacks and 200,000 are recurrent attacks.
~ Each year, about 40,000 more women than men have a stroke.
~ African-Americans have almost twice the risk of first-ever stroke compared to Caucasians. The age-adjusted stroke incidence rates (per 100,000) for first-ever strokes are 167 for Caucasian males, 138 for Caucasian females, 323 for African-American males, and 260 for African-American females.
To see pictures from the July 2005 Stroke Camp, go to http://www.swanrehab.com.
Copyright 2005 Celise Downs
Celise is a Young Adult fiction author and owner of Gemini Mojo Press. She currently has two books out and is working on a teen series. Check out her Young Adult Fiction with a Twist at http://www.GeminiMojoPress.com
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