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.
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Part 2 of this special guest article, “An Oregon Tale”, can be found here 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