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By Susan S. Sullivan, Special To The Bulletin
REX—David Jayne lives a “high tech” life. He spends
the entire day in front of a computer that is installed between the arms of his
wheelchair. He has air and nourishment pumped into his body. He speaks through
a voice simulator and moves his battery-powered wheelchair around with slight
movements of a finger or leg.
Jayne was diagnosed with Lou Gehrig’s disease, or amyotrophic
lateral sclerosis, 12 years ago. He was 27 years old. The diagnosis came around
the time of David and his wife, Melissa’s, first wedding anniversary and
the confirmation that their dream of parenthood was to be realized.
“My emotions reached the highest highs and the lowest
lows,” he recalled. “I had thoughts of great anticipation of our
first child and deep, cavernous fears for my health.”
When Hannah was born, Jayne was only experiencing weakness in his
left arm. By the time son Hunter was born 18 months later, Jayne was wearing
leg braces. His arms were too weak to bathe, dress, feed or diaper the
children. Losing the ability to speak, and waiting two years for an expensive
computer system to restore communications with the family, was an especially
devastating time.
Despite the obstacles, Jayne is a self-described
“hard-headed” fighter, struggling daily with a devastating disease
that has meant the end of life as he once knew it and which will one day end
his life on earth. Jayne is fully functional mentally, though he can no longer
breathe, chew, swallow, talk, walk or even scratch his nose.
Given three to five years to live at the time of his diagnosis,
Jayne recalls this time as “the beginning of a journey, a journey of many
changes and challenges.”
“ALS ravages much more than the body, it tries to destroy
families, marriages, friendships, dreams, one’s sanity, finances and even
the will to live,” he said.
Jayne has found ways to circumvent some of the effects of ALS as
the disease progresses. He has opted for a feeding tube and a ventilator,
traumatic decisions that have prolonged his life while increasing his
dependency on others, options most people with ALS can’t or don’t
choose.
“The vent (ventilator) was the change I feared most of
all,” he said. “I suppose it was a combination of losing independence
and the stigma of a vent. Society is so quick to write off the terminally ill
... So little is written about the celebration of life. I was so shocked and
amazed at how the vent improved the quality of my life. I know I would not be
here today without the vent, but it has far exceeded my expectations. It would
have been reassuring to read other positive vent experiences.”
Still, Jayne said, the ventilator decision was very complex, with
both rational and emotional components.
“On a rational level, I knew my mind would remain lucid,
therefore viable life exists,” he said. “I knew I still had much to
offer my children and others. I have experiences to share and new ones to make.
Emotional thoughts I considered included being trapped inside a useless body,
also becoming more of a burden to my family. As a Christian, I know God loves
me and gave me life. I also know he gave me a will to do as I choose with this
life.”
“I choose to live life for the experiences, the good with the
bad,” Jayne said. “I pray for the strength not to regret the past, or
fret the future, but to rejoice and live in the present.”
Two years later, the decision to use a ventilator holds no regrets
for Jayne.
“Life on the ventilator has given me a second chance at
living,” Jayne continued, “an opportunity to help and encourage
others. I have had the chance to help a gentleman in Panama acquire a computer,
a wonderful lady in Washington access her computer, and encourage a friend in
California to accept his situation and live life. Maybe this would have all
taken place without me, but it has made my life very rich and worthwhile.”
The richness is present in his wry smile and his sense of humor,
which remains intact. He communicates by using finger movements to select each
letter of words he spells into his computer. The words are then
“spoken” by a voice-simulation program. Jayne has been known to
change the voice option, to produce a “stranger’s” voice, to
startling effect on unsuspecting listeners.
Though the 6’3”-tall sportsman has had to give up the
salmon-fishing trips to Alaska and the design and creation of flies for
fly-fishing, he still hunts deer and turkey with a specially rigged crossbow.
Turkeys are invited within arrow range of a camouflaged blind by a convincing
turkey call installed on Jayne’s computer.
An archery target, well ventilated, perches on the end of
Jayne’s driveway. He still enjoys spending time outdoors.
“My favorite place to be is in the woods,” he said.
“If I can’t be in the woods, my driveway will do. I feel the warm
breeze on my face, the June bugs singing and the distant call of a blue jay.
That should clear anyone’s head if they take the time to listen and enjoy.
Unfortunately I have to spend too much time in bed. As Morrie Schwartz says in
(the book) “Tuesdays with Morrie,” ‘Bed is dead.’”
He also enjoys spending time with his kids (he and his wife
separated earlier this year) and attending their school events and other
activities. Jayne keeps in touch with nearly 20 people a day by e-mail and is
an active member of St. James Parish in McDonough. He is also an avid fan of
the Georgia Bulldogs and the Atlanta Braves.
A few years ago, Jayne started a list server to provide people
with instant answers to questions about ALS and to point them to resources for
dealing with the illness. The list server now has 400 members worldwide, all of
whom can share on-line companionship and support. The list server is currently
managed by a friend of Jayne’s.
Amazingly, Jayne has discovered an ability he never knew he had
before the disease—a gift for drawing with the use of his computer. Though
he admits patience is not one of his virtues, he has produced dozens of
detailed drawings, some of which have been used on greeting cards and
announcements for friends and family members.
He’s also working on a children’s book about a family
dealing with a relative who has a disability. Jayne has titled the book
“Purple Braces,” after a comment his daughter once made about wanting
braces like Daddy’s when she grew up.
All of these people and projects give meaning to Jayne’s
life. He sees it as part of a divine gift.
“God is the only reason I am still here,” Jayne said.
“I have faced death too many times. Not long after I was diagnosed, I
turned my problems over to the Lord. I have and still question what is my
purpose. He hasn’t answered yet, laughing. I find myself thanking him for
simple things I fear I would take for granted.”
“I am thankful for feeling the warm sun on my face, for the
giggles of my children, for the changing of the seasons,” he said.
“Most days I’m thankful for a new day, actually every day if I think
about it. I am thankful I’ve seen my children grow and hope I stick around
to see them become adults. I am thankful for the physical abilities I have
remaining, that I can drive my wheelchair and type to communicate. I love life
and the experiences it has to offer.”
Jayne’s best friend, Suzie Cowan, who e-mails him regularly
from Memphis, Tenn., sees Jayne as an important gift in her life.
“I think God put David in my life to point out the important
things in life,” she said. “To show the importance of having people
that believe in you and how that can help someone in their life. I look at life
differently now. If David can continue to fight for his life with all possible
curves thrown in his path, then all of us should be able to handle the small
problems we encounter in our lives. I know David will be a source of
inspiration to me for the rest of my life and I will always look to his example
of faith, courage and perseverance.”
Cowan said Jayne’s biggest struggles involve asking for help
and asking for companionship. He wants to live, but doesn’t want to be a
burden, she said, struggling to preserve some forms of independence in a body
that requires dependence on others.
With the help of his caregiver, Rose Delisser, his parents, Bill
and Georgia Jayne, and more than 60 members of a “circle of
caregivers,” many of them parishioners at St. James, Jayne is living a
meaningful life.
“He has a need for companionship and a need for practical
help,” said Msgr. Henry Gracz, pastor of St. James, who has visited Jayne
both at home and in the hospital.
“The most expressive part of David right now is his
eyes,” Msgr. Gracz said. “I think of the classic phrase, ‘the
eyes are the windows to the soul.’ I was visiting him in the hospital when
some of our teens dropped by and his eyes just lit up when he saw them.”
Since spring, the Life Teen group at St. James, guided by adults
such as Jed and Debbie Weiher and Mark Sullivan, spend the third Saturday of
each month helping Jayne with practical chores. This work has included washing
the specially equipped van, mowing the grass, planting flowers, trimming hedges
and bathing Jayne’s dogs.
“David got up in front of everyone at the church and said he
needed help,” Debbie Weiher recalled. “My husband and I went to the
first ‘circle’ meeting. We got to know David as a real person. He has
a wonderful sense of humor and a wonderful mind.”
Weiher said a talk Jayne gave at graduation in the early summer
has changed her entire perspective, leading to a decision to quit her job,
start a home business and rethink her parish and family priorities.
“I am so much more at peace now,” she said. “He
opened my eyes to the fact that there are worse things than not having more
money. He’s a very special person.”
Recent hospitalizations, along with the need for round-the-clock
skilled care, have contributed to a significant financial burden for Jayne.
Friends of Jayne recently set up a trust fund to help with those costs.
Contributions can be directed to “The David Jayne Trust” c/o Debbie
Bartolomei, 140 Norwick Way, Alpharetta, GA 30022. Call (770) 552-7447 for
information. |
