Posts Tagged ‘survivor’

Giving Thanks

November 20, 2012

It’s been nearly 3 months since my last blog post. That’s what attending to the details of our annual Working 2 Walk Symposium will do. While I love the knowledge, the energy, and the connections generated by the conference, it’s nice to have the chance to drop back to a slower pace and take time for reflection.

Our family shares in a very special Thanksgiving tradition. When we first moved to the beautiful Hood River Valley at the base of Mt. Hood in Oregon, we quickly made friends with our neighbors on the Dee Highway. We celebrated our first Thanksgiving together in 1979. A core group of 5 families began to generate offspring, some moved away from the Dee Highway, but as the families grew and dispersed, the shared Thanksgiving dinner continued.

Mt. Hood towers over the Hood River Valley

This holiday is more revered by our family than the Christmas/Hanukkah period. We look forward to spending the day with our dearest friends who we have known for most of our lives. We have supported each other through life’s travails of death, divorce, and catastrophic injury. This year’s celebration is one of milestones:

  • It was on Thanksgiving weekend 10 years ago that a flying wheel landed on top of my son’s pickup, and changed his and our lives forever. The day after his accident, two of the Dee Highway women drove 200 miles to be at our side in the hospital. Not coincidentally, they were also the midwives who delivered him at birth. Our friends provided the foundation of a support system that helped Noah navigate his way to a successful career as an attorney working for the EPA in San Francisco.
  • After 31 consecutive years of organizing this annual get-together, the “matriarchs” decided it was time to pass on the responsibility. Last year’s event was led by the “patriarchs” (dads), and this year for the first time the 2nd generation takes over. Our son Isaac and his wife will host a gathering of 30, achieving a milestone that ensures our wonderful tradition will continue for years to come.

I write this story to remind myself of what we have to be thankful for, and also what a world of difference a support system makes when one suffers a spinal cord injury. It is often the determining factor in whether a survivor adjusts well to post-SCI life. Unfortunately, the strength of one’s support system is often left to chance.

At Working 2 Walk I met people who had traveled to the conference from great distances. Those with high-level quadriplegic injuries were accompanied by family members and/or dedicated assistants. As I said in my opening remarks, they were the lucky ones. For every SCI survivor who attended, there are thousands more who would never have the opportunity because they lack such a support system.

I am thankful for our lifelong friends and family who anchored my son’s support system. I am thankful for his self-determination that worked in tandem with his supporters to bring him where he is today. And I am thankful for the opportunity to work with members of the SCI community, who practice persistence, self-discipline, courage, and grace on a daily basis.

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Home for the Holidays

December 28, 2011

On December 1, 2002, my son suffered a C6/7 spinal cord injury when a wheel came off an oncoming truck and landed on top of his pickup.  9 years later, having graduated from law school and secured a full-time job, he came home to celebrate the holidays with his family.  Together we reflected on the remarkable journey he had taken to work his way back to physical, emotional, and financial independence.

If there is such a thing as being lucky in the wake of a spinal cord injury, it applies to my son.  Had his neck broken just a few millimeters higher, he would not have the use of his hands or arms.  He used every ounce of his energy and determination to achieve his goal of independence, but still could not have made it without the extraordinary support of his family, friends, community, and numerous strangers.  Such good fortune does not fall to many who are stricken with SCI.

While we celebrate and take pride in his accomplishments, we know that he represents the minority of those living with SCI.  According to the National SCI Statistical Center, at 20 years post-injury, only 35% of persons with a spinal cord injury are employed.  This statistic is not just a function of injury level; the employment rate for people with paraplegia is only slightly higher than for those with tetraplegia.  There are numerous social, psychological, and economic barriers that conspire to keep persons with SCI out of the work force.

The unemployment rate is but one of many “invisible” secondary complications of spinal cord injury.  While the media is full of “inspiring” stories about people living with SCI, much less is said about what goes on behind the scenes.  No one wants to start a pity party, but if we’re going to achieve “cure consciousness”, we need to speak the truth about:

  • the loss of bowel, bladder & sexual function;
  • psychological trauma & suicide;
  • loss of time, productivity, and often independence;
  • a host of other issues that accompany spinal cord injury.

For every heartwarming story in the media, there are hundreds more untold about people and the daily realities of SCI that no one ever sees.  The public is often led to believe that one can achieve recovery through hard work and determination alone; if this were true, the majority of survivors would be up and walking around.

I am extremely proud of what my son has accomplished since his injury, and at the same time appreciate that it was made possible by some good fortune and a remarkable support system that augmented his efforts.  I also know that he would readily embrace the opportunity for regenerative therapies that could give him back a healthy body.

Earthquakes & Wheelchairs

March 16, 2011

It took me a bit longer than planned to get back to this blog. . . . meanwhile we have seen the catastrophic earthquake and tsunami strike Japan and dominate the news.  My first reaction to the disaster was “What about the people in wheelchairs?”.  It’s always my first thought now when stories break of this nature.

How do you get to higher ground in a matter of minutes?  Only if you’re lucky enough to have someone to carry you.

How do you crawl your way out of a pile of rubble if you’re paralyzed?

If you survive, how do you push your wheelchair through the chaos?

How do you get the medications and equipment that your life may depend on?

Human need is enormous after a calamity like the one in Japan.  For many of the wheelchair users that I know, one of their greatest fears is to be caught in such a natural disaster.  To all those in Japan who may be facing the challenges of survival in a wheelchair, know that we are thinking of you . . .

Marilyn

It’s a Thin Line

February 6, 2011

between explaining the facts about daily life with a spinal cord injury, and evoking self-pity.  Word choice, attitude, and presentation can make all the difference.

As advocates for a cure, we want to speak from a position of strength.  This means we arm ourselves not only with knowledge but with an understanding of the power of specific words.  Let me cite a couple of examples.

If you have a spinal cord injury or are a family member, do you see yourself as a “victim” or as a “survivor”?  At U2FP we made a mistake early on by saying that we represented “victims”; we were gently corrected by several observers who pointed out that “survivors” has a much more positive connotation.  A quick dictionary check shows that “survivor” means “somebody with great powers of endurance” or “somebody who overcomes a traumatic experience”.  A “victim”, on the other hand, is defined as a “helpless person”.  The word associations speak volumes.

Another more subtle but equally important distinction comes when we use the words “handicapped” or “disabled” instead of “accessible”.  These terms are used to describe everything from a parking spot to a hotel room to event seating.   Think about it.  The words “handicapped” and “disabled” put a label (with negative implications) on the user, whereas “accessible” characterizes the service provided by a vendor, who assumes the burden of responsibility.

When you call to book hotel accommodations, you can ask for either a “handicapped” (my problem), or “accessible” (your problem) room.  Personally I would like to see the term “handicapped” eliminated from our community’s vocabulary.  The word diminishes us.

In my previous post I talked about keeping an “Elevator Speech” in your hip pocket as an advocacy tool.  Equally important is your own personal cultivation of language that speaks positively and forcefully about your situation.


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