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| Noah Smith, graduating from the University of Oregon; the only graduate in his class in a wheelchair. | |
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RECENTLY MY OLDEST
son, Noah, graduated from the University of Oregon. He wore the
traditional cap with tassel as a concession to his mother’s
prodding. The gown, however, bothered him. Where the hell did the long
flowing folds belong? He opted to go without, etiquette be damned. In
its place he put on a bright pink shirt with striped tie. If you are
going to draw attention, you may as well shine. As he proceeded forward
amidst the other students draped in black, he glowed like an orchid in
a bed of coal.
When the Provost announced Noah’s name, a loud cheer interrupted
the decorum. The ovation celebrated an effort occurring parallel to the
academics. These were his fans. They rightfully claimed a moment of
brazen discourteousness. My resistance to the incessant urge for a feel
good moment, about a story that has never felt very good, wavered. I
allowed myself a smile.
The school’s president, Dave Frohnmayer, paused momentarily for
order, then shook Noah’s hand. He got the diploma. But my wife,
his brother, and I — and his fans — all graduated with him.
Noah received a BA in Spanish, summa cum laude. He would have preferred
that moment to be remarkable for other reasons, but of the 1000-plus
graduates, he was the only one in a wheelchair.
EACH YEAR THERE are 11,000 spinal cord injuries in the United States. Of those 11,000, more than 58 percent, or approximately 6,400, are between the ages of 16 and 30.
Most of them — 78 percent of those, or roughly 5,000 — are men.
The number of people who are alive in June 2006 with a spinal cord
injury (SCI) is estimated to be 253,000. Those numbers will grow in
succeeding years as the causes of death due to complications are
delayed.
Currently, spinal injured men and women approaching middle age are the
first generation of SCI individuals to live relatively long lives. The
reasons are diverse but generally speaking, improved medical practices
mitigate the problems associated with urological management,
respiratory ailments, and skin care. Today’s younger generation
who are experiencing spinal injuries may look forward to 30, 40, even
50 or more years of life with paralysis. Many of these would exclaim, tongue in cheek, “Whoopee!” And yet — it beats the alternative.
Only 52 percent of all SCI individuals are covered by private health
insurance at the time of injury. That percentage is much lower among
the 16 to 30 year old age group to which Noah belongs. The first year
expenses for low level quadriplegia, such as my son’s, average
$478,000. Subsequent years are approximately $54,400.
His life expectancy with such an injury is 40.6 years, or about
18 years less than that of others his age that do not have an SCI. If
you do the lifetime math the costs related to his injury come to $2.2
million, plus the first year’s cost, give or take a few hundred
grand.
These estimates do not factor in the likelihood of increased longevity
anticipated by today’s generation. Nor do they include indirect
costs such as losses in wages, fringe benefits and productivity.
According to the University of Alabama injury information network,
“These average about $60,000 per year in March 2006 dollars, but
vary substantially based on education, severity of injury, and
pre-injury employment history”.
The costs are staggering and this burden is borne primarily by Medicaid
and Medicare. If you dare to proceed with the math, you soon reach 12
digit numbers over the course of my son’s life for he and his
peers in the exclusive club of the spinal cord injured. The final
figure is somewhere in the neighborhood of what four years of an
ill-conceived war costs, just for palliative care.
In spite of these numbers, SCI is Pluto in the solar system of
healthcare maladies. Disrespected and devalued, its orphaned
inhabitants must sometimes beg for attention from entitlement programs.
However, if you include costs associated with other neuro-degenerative
conditions that lead to paralysis, such as multiple sclerosis,
Parkinson’s, and cerebral palsy; the numbers grow to astronomical
size.
Suddenly the billions ascend to trillions and our eyes glaze over.
Ironically, this may explain why social imperatives for restorative
therapies languish: we can’t comprehend we pay for this one
dollar at a time. Yet, our society moans about entitlements as if there
were no alternatives. Clearly, the impetus for curative solutions makes
sense in practical terms as well as for compassionate reasons.
Noah became a member of this statistical profile, and an item on the
outgo side of your tax ledger, in December 2002. A wayward wheel on a
highway, another’s carelessness, a bit of bad luck and suddenly
he joins a notable database. He was 22 at the time, which means
actuarial probability gets him to his 63rd birthday. Should he decease
before or after that he will be less or more than average.
These numbers are disturbing to a parent but, of course, we do not see
our son as an abstract bit of data. Certainly we would not relegate him
to being average in any way. He is flesh and blood, our first born, and
we place enormous value on his life. Still, the realist in me must
acknowledge that unless things change, the odds are, complications of
his injury will snag him somewhere along the line earlier than we would
like.
WHEELCHAIRS, SO AGILE on smooth surfaces, are awkward on grass.
Noah’s little brother Ike, all 6’5” of him, helped
negotiate the uneven terrain of the outdoor venue. They are both former
ski racers. Together they slalomed through the horde of graduates and
family clogging the narrow aisles.
They learned to ski and race on the slopes of Mt. Hood where I
volunteered with the National Ski Patrol. From that activity we
received a family pass at Cooper Spur Ski Area. For several years we
made “first tracks” and then cleared the slopes at
day’s end. They became wonderful skiers.
Their skill and daring developed under the tutelage of local legendary
ski coaches, Bill Cimock and Victor “The Inflictor” Roy.
Noah, a member of the 1996 Oregon State High School Championship ski
team, is not skiing these days. Ike, who showed promise as a Junior
Olympic competitor, stopped racing to pursue his passion for freestyle.
He now prefers to jump off cliffs. He also made an imposing bodyguard amid the throng at the summer commencement.
My wife and I and other family members sat in the front row for the
convocation. So it has been since Noah’s injury in late 2002. I,
the inveterate chronicler and she, the logistical virtuoso, have placed
ourselves as close as possible to the action.
Occasionally, the proximity exceeded boundaries long left behind. There
are few reversals in life more dispiriting than assisting an adult son
or daughter with the mechanics of a neurogenic bowel and bladder.
Parenting, of course, is an imperfect pastime to begin with. Just when
you begin to know what you are doing, the kids flee the nest. In an
attempt to pre-empt this exodus, I’d told my two sons when they
were growing up, “Life is an adventure. It’s ok to get
lost.” I’d hoped my little bromide would alert them to the
erratic journey ahead. For me, it was a way to let go and prepare to
set them free in life’s choppy waters.
My counsel was that you could find design in the unpredictable. I
assured them that straying off course was the norm. This variant on
“real men don’t ask for directions,” would soon be
tested when Noah met with misfortune. In truth, I knew little about
letting go but I was about to get educated.
His transition from intrepid wanderer to quadriplegic was
instantaneous. The paralysis slammed into our world like a meteorite,
knocking us off our axis. My parental homily about adventure seemed
naïve. I denied, I got mad, and I bargained with the devil. I went
through all the other stages of grief. But it did no good. Rather than
letting go, I was holding on — tightly.
The ensuing chaos assaulted my wife and me. Our placid lifestyle was
upended. We should have been toying with the routines of empty nesting:
re-painting the children’s rooms and storing mementos. Instead,
our home transformed as doorways widened and ramps appeared to
accommodate the injured son returning to live with us.
The ignorance is the worst. How little you know. Decisions must be made
before you can comprehend the questions. An irrational hope lingers
even as panic threatens. You either swim against the current of your
distress, or you are swept away.
We crammed ourselves on physiology and anatomy. We learned the foreign
languages of disability rights and neuroscience. We became students of advocacy. Education would not cure our son. But our vigilance to become informed gave us a respite from the bedlam.
The healing is a stew of adaptation and bodily repair seasoned with
plenty of resignation. It is unique for each person and family with a
spinal injury. Universally, however, it is ugly. You curse social
services, medical practitioners, politicians, and your loved ones. You
experience a cornucopia of incontinence, pain, and shattered dreams.
The negatives rule for a long, long while.
John E. Smith, a husband, father, writer, and area postmaster
is from Hood River, Oregon. Smith writes commentary on disability
issues and scientific research relating to paralysis. He also advocates
for the spinal cord injured community and, by extension, for those
living with any neuro-degenerative condition. Smith blogs about his
book-in-progress here.
Photo Credits: John E. Smith, Joey Gottlieb, Scott Conerly, Nikki
Guerra and the incomparable Scott Pruett on the Think Pink pics
MY BOYS TOOK
unique paths on their way to finding themselves by getting lost. Noah
opted to postpone college following high school. Instead, he spent
eight months in Africa. First, he visited family in Kenya and then
participated in a community service program in South Africa. He
returned to the states and enrolled at the U of O to pursue studies in
Theatre and Spanish. He spent the summer prior to 9/11 in Mexico in a
language immersion program. He was all set to study in Chile for his
junior year. I anticipated being there with him if even only through
his letters. Then, to put it succinctly, something happened.
Ike’s interests are less cerebral but equally
adventurous. He dropped out of college after two terms of idle beer
drinking. My wife and I fussed over his indifference to education.
Following an indecisive several months at home, he headed to Mammoth
Lakes, California. There, he apprenticed as a “park
builder” at America’s primo freestyle ski area, Mammoth
Mountain. Park builders construct the half pipes, place rails for
freestyle tricks, and build ramps and landing areas for the acrobatics
of skiers and snow boarders. I might fluff this up a little more, but
essentially, he is a ski bum. I say that with great affection and
respect. For how can I admonish him for a footloose lifestyle when,
secretly, I am jealous? He was enjoying his second year at Mammoth when
he got “the call.”
The police report says 1:16 in the afternoon. Noah was returning to
school following Thanksgiving. He was on the Delta Highway in Eugene,
the 105. Witnesses state that a wheel came loose from a truck heading
in the opposite direction to Noah. It struck the median barrier between
lanes and launched into the air. The wheel crashed into Noah’s
small pickup precisely above his head. Given the speed of these
opposing forces, the cab collapsed and broke his neck.
Noah’s truck rolled to a stop without a secondary collision. That
fortuitous occurrence probably saved his life. Several subsequent
events completed the bad luck, good luck scenario. A police cruiser was
on the scene immediately. An out-of-service ambulance responded within
minutes. Traction was applied to his neck by an EMT while the
“jaws of life” cut away the demolished roof. He had surgery
within three hours to relieve the compression on his spinal cord. The
other driver was uninsured.
NOAH HAS NO RECOLLECTION of the drama. It is an entirely lost
day. Of course, he got whacked on the head pretty hard. Perhaps he
should be dead given the circumstances. There were moments in the weeks
afterward when he wished death had come to pass. But he didn’t
die and he is now glad that is so.
A chipped tooth, a small puncture wound on the back of his left hand,
and a burst fracture of the C7 vertebrae in his neck; these were the
extent of his injuries. The wound healed, our dentist fixed the tooth,
but the bone fragments compressing his spinal cord were not so
straightforward. Though the pieces were removed and the spinal cord
decompressed, paralysis from the nipples down resulted, nonetheless.
Noah spent 11 days on the trauma ward at Sacred Heart Hospital adjacent
to the University campus. Then he transferred to the Rehabilitation
Institute of Oregon (RIO) at Good Samaritan Hospital in Portland, OR.
After nine weeks, he was released to our tentative care.
We are blue collar Oregonians. We layer ourselves in fleece, put studs
in our tires, and have an inflated “kids in college”
mortgage. Professional caregivers were never an option for our family.
We did it ourselves because we had to. Ike, who had spent so much of
his growing up emulating Noah, was asked early on to help his brother
with the most basic of needs related to acute SCI. He never hesitated.
Care giving introduces one to the physical and spiritual details of a
broken neck. It is Groundhog Day hospice - the patient does not die, he
or she just continues to endure the stasis that is paralysis, assisted
by personal care attendants. The routines and procedures of today are
repeated tomorrow and the next day and the next. Peer into the
kaleidoscope of paralysis and you view anger, boredom, immodesty,
heartache, and mercy twirling together in garish symmetry.
Ike’s blithe spirit ventured into this crucible. He brought
skills to bear I lacked or had lost under duress. I was the crestfallen
father, coping poorly. For him, this was like another daunting slope.
You tighten your bindings, snap on your goggles, and head down. All any
of us could do was to make Noah feel valued, but Ike did it best. In
return, Noah refused to give up on seeing what he could make of this
mess.
He progressed over the first 16 months from near total dependence to a
quad capable of living independently. He drives, manages his personal
hygiene, and, in a slow-motion way, rolls onward with his life.
In the last four years, I’ve met many families wandering on their
own troublesome journeys through the landscape of SCI. Everyone expects
parents will nurture their children in such circumstances. But when
siblings or friends provide extraordinary support, the love aspires to
sacrament.
Noah’s accident gave our family an opportunity to experience
stewardship and service. We saw aspects of each other that would
otherwise be unknown. None of us wanted this and yet, well - there ya
go.
NOAH’S DEGREE is neither an end nor a beginning.
Remarkable? Perhaps from the perspective of low expectations that
characterize disability clichés, but a college degree is
something less than a fairy tale come true. Noah continues to subsist
in the bubble world of fundraisers and welfare. At best, his BA is a
handhold on a precipice with the Disability Gulag waiting, should he
lose his grip.
Some try to pin the badge of inspiration on us. Fine. Thanks for the
compliment. However, I remain suspicious of the “courage in the
face of adversity” label. It is a distraction. I don’t
doubt the sincerity or the gut reaction of others. But I am wary of the
condescension.
For not only do the disabled misfit physically, they are also square
pegs in the round holes of our emotions. In an attempt to tidy up our
confused feelings, we place them on a pedestal. This is a mistake.
By tossing them the bone of admiration we assert a bias; the equivalent
of telling a woman athlete she is pretty good, for a girl.
Ike, better than any of us, gets it. He knows, intuitively, that high
among what his brother misses most is exploration and risk-taking.
Accordingly, he insures that his own youthful bravado sometimes
includes Noah. They can’t jump off cliffs together, but there are
still escapades.
Last summer, they traversed the Columbia River in a two person kayak
and toured the coves along the Washington shore. I thrilled at the
reckless spontaneity of their caper. The accompanying anxiety reminded
me that fragility is a state of mind. I’m not certain what Ike
thinks about when he is flying upside down above the ice and snow. The
parent in me hopes it is his landing. Yet I would not be surprised if
it were something along the lines of, “Next time; higher!”
I salute the self-confidence that allows him to occasionally soar above
reason. All the caution in the world would not have spared Noah from
the coincidence that changed his life irrevocably. So, yes, I am proud
of their pluck, even when it’s escorted by an element of danger.
Ike now plies his trade at Mt. Hood Meadows, closer to home. Whenever
possible, he is skiing and stealing scenes in the underground videos so
popular to the fringe world of freestyle.
Noah intends to seek his kicks at a yet to be determined law school,
preferably far away from our hovering. His need for assistance and the
desire for independence are linked until science paves the hostile
topography of spinal cord injuries. His self-reliance still comes with
an asterisk — but he yearns for the privacy of a personal quest.
Sure, I would choose another course than the one we are on.
Quadriplegia does not end with a handshake and a diploma. Long after
the applause, the fund-raisers, the sympathy and empathy, the paralysis
remains. But I would not choose another son and this is his course.
• • •
"An Oregon Tale", appeared on New West Columbia Gorge.
• • •
John E. Smith, a husband, father, writer, and area postmaster
is from Hood River, Oregon. Smith writes commentary on disability
issues and scientific research relating to paralysis. He also advocates
for the spinal cord injured community and, by extension, for those
living with any neuro-degenerative condition. Smith blogs about his
book-in-progress here.
Photo Credits: John E. Smith, Joey Gottlieb, Scott Conerly, Nikki
Guerra and the incomparable Scott Pruett on the Think Pink pics.