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Writing Your Own Script & The Dignity Of Risk
Bob & Ellen Wilson, SDBIF
Members
Do
not fear death so much, but rather the inadequate life.
Bertolt Brecht
For Ellen Wilson the phone call
she received at 4:00 p.m. on Saturday, July 1, 1995, will always be a distinct
dividing line in her life. Before the phone call her husband, Bob, owned a yacht
brokerage in San Diego. Ellen had recently quit her job and begun training in a
physical therapy program at California State University. Bob’s business was
successful and he had recently started helping others by working as an inspector
for the Federal Emergency Management Agency (FEMA). Then came the phone call.
The phone call was from a
detective in New Orleans reporting that Bob had been brutally beaten. His
frontal lobe was caved in, the vision in his left eye was gone, the hearing in
his left ear was gone, and his hands and fingers were broken. Bob refused to die
despite multiple stab wounds and severe traumatic injury to every lobe of his
brain. The police asked Ellen to come identify him because his face was swollen
beyond recognition. She was able to identify Bob only by his feet. After six
hours in reconstructive surgery Bob began the journey to regain independence and
self-direction after brain injury. He spent one month in acute care in New
Orleans, four months hospital rehabilitation in New York, and seven months
outpatient rehabilitation in San Diego. Ellen would learn that the human spirit
is limitless and that each step of recovery requires risk. In the process they
would lose their business, their home and be forced to move in with Ellen’s
newly married daughter and her husband. The journey would not be easy.
Make
voyages! Attempt them! There’s nothing else!
Tennessee Williams
That first year they heard from a
formidable group of rehabilitation doctors and counselors that the majority of
Bob’s recovery had taken place. The message was clear, “Bob would forever be
limited.” He could not be expected to drive again, work again, or even be able
to plan and carry through on simple projects. Few professional voices said
otherwise. Harlan Alcorn, clinical psychologist, disagreed. He urged Bob and
Ellen to believe that the human spirit cannot be measured by a neurological
test. A person’s determination and perseverance can fuel hope and expectancy.
Dr. Alcorn helped them leave the door open so that their spirits could stay
intact.
All
growth is a leap in the dark, a spontaneous, unpremeditated act without the
benefit of experience. Henry Miller
Two critical philosophies guided
Bob and Ellen throughout recovery. The first, “write your own script,” and
the second, “the dignity of risk,” most accurately describes how they have
reshaped their lives.
Dr. Alcorn urged Ellen to allow
Bob to “write his own script.” He explained how important it is to treat the
“person” and not the “diagnosis.” He insisted that once focus is on the
diagnosis, the person is lost. It is far better to have expectancy, to encourage
the survivor to take a journey, rather than to say “you should be going to x,
y, x for the remainder of your life.” Better to say, “I don’t know the
destination”, leaving the door open to hope. According to Dr. Alcorn, “when
you kill hope, you kill effort, fulfilling the prophecy that was made.” Bob
and Ellen heard plenty of doom and gloom proclamations along the path from
emergency to rehabilitation. It was not easy to find open doors of hope amidst
all the “you’ll nevers” thrown at them by well-meaning medical personnel.
They decided that hope was the only way.
Dare
to be yourself. Andre Gide
Ellen watched Bob in a coma,
barely alive, unable to talk, gradually relearn how to speak, stand, walk, brush
his teeth and tie his shoes. He progressed through all the stages of
development, from infancy to toddler to teen, to finally, almost six years
later, to an adult with purpose participating in life. Somewhere along the way,
the phrase, “the dignity of risk”, popped out at Ellen from a textbook. She
felt a strong tendency from a caregiver’s perspective to be overly protective.
This is understandable since so much had been taken from Bob and since they both
felt so vulnerable. Yet each new step for Bob required her to step back in order
to allow him to take risks. Like a flash, she realized that Bob deserved to have
the dignity that risk brings. To live otherwise, simply isn’t living.
Risk! Risk anything!
Care no more for the opinions of others, for those voices. Do the hardest thing
on earth for you. Act yourself. Face the truth. Katherine Mansfield
Ellen knows that we all have a
basic need to direct our own life. As hard as it was to say “yes” each and
every time Bob wanted to stretch his limits, she said “yes.” She chose to
stand beside her husband and say to him, “go for it.” After Bob passed the
driver’s safety interview he declared he intended to fly to New York alone and
drive his truck home. The man who was told he would never read a map found his
way safely from New York to San Diego. The man who had his hands and fingers
crushed by an assailant using the claw end of a hammer is using that same tool
to remodel a fixer-upper for Ellen. In the first few months, Ellen questioned
why they took on such a project, but, as always, she is astounded by what Bob
can do. The more risk he takes, the fuller life he lives and the more he
progresses. Bob is making his own path, he is determining himself what his
limits are instead of other people dictating to him his capabilities. His hands
and fingers were crushed, not his spirit.
The
guy who takes a chance, who walks the line between the known and unknown, who is
unafraid of failure, will succeed. Gordon Parks
A
footnote: Bob and Ellen not only had to deal with recovery and the
emotions of loss, grief, depression and despair, they also had to fight FEMA, a
big bureaucracy. FEMA helps those who face natural disasters like floods and
earthquakes, but would not accept responsibility for Bob who was injured while
on assignment. When Bob and Ellen attempted to file suit against FEMA they had
trouble finding an attorney because of their unusual claim. Yet, they knew they
were right. Bob would not give up. As usual, his tenacity overcame the odds.
FEMA finally awarded the Wilsons a financial settlement.
Don’t
give up! Bob Wilson
