STROKE CAMP: REST, RELAXATION AND RENEWAL By Celise Downs
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.
STROKE FACTS:
~ 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
www.swanrehab.com.
Copyright 2005 Celise Downs
|
