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.
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“An Oregon Tale”, appeared on New West Columbia Gorge.
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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.
By John E. Smith, Guest Writer, 3-28-07