I recently participated on a panel about aging with disability. Because I’ve been a C-5/6 quad for 34 years, the panel organizers figured I might have some valuable advice for newly-injured SCI patients and their still-distraught families. When were were asked to introduce ourselves, I jokingly referred to recent, unexpected health setbacks by saying “Hi! I’m Jeff, and I’ll be your worst-case scenario for the evening.”
I didn’t want to frighten those who were still coping with the fear and confusion that accompanies a new injury, but I also wanted to be honest about living with SCI. So I prefaced my comments with one of the most fundamental truths about paralysis:
Mother Nature Wants To Kill You.
It’s irrefutable: For those who’ve been paralyzed by spinal cord injuries or other disabling conditions, nature puts us at a distinct disadvantage. Just take a look at what happened in Louisiana after Hurricane Katrina: The elderly and disabled immediately faced serious threats to their survival. Things are hard enough under the best conditions, and all it takes is one natural disaster (or a man-made act of terrorism) to kick us to the bottom of the food chain.
It starts with bacteria. In the same way that microscopic organisms killed the Martian invaders in “The War of the Worlds,” harmful bugs are always lurking in our broken, compromised bodies, waiting for a chance to multiply. Before the advent of antibiotics, paralysis was a death sentence. Now, we can almost always win the battle against life-threatening infections. But nature adapts , and it’s unlikely that we’ll ever win the war.
Too gloomy for you? Then consider this: As long as we can continue to win our daily battles with Mother Nature, we can maximize our potential and lead happy, productive lives full of satisfaction and achievement. But if we want to stop Mother Nature from killing us, we have to take full responsibility for optimizing our health. It’s no different for the able-bodied, but comparatively speaking their defense mechanisms are far more robust. We can’t be so casual: From the day we’re injured to the day that Mother Nature finally wins, we are all the custodians of our own hard-won survival.
If you’re a newly-injured quad or para, it’s easy to adopt a carefree attitude toward health and longevity, but the penalties for doing so are way too high. I’m not suggesting that all quads and paras should lead risk-free lives: If you want to join the demolition derby of quad rugby or climb Everest in a wheelchair, then by all means go or it. But for all paras and quads, the simple act of survival requires diligent discipline. If you can’t rise to the challenge and accept that responsibility, don’t expect any sympathy when Mother Nature takes you down.
I’ll never forget what happened to a guy I rehabbed with back in 1979/80: He was a T-5 para, so already I didn’t have any sympathy for him (such is the nature of quad/para relations!), but I was totally appalled by what happened a few years later. This guy broke his right arm by aggressively abusing it – a nasty, compound elbow fracture. While he still had a plaster cast on his arm, he continued to push his wheelchair with a complete lack of caution. The fracture couldn’t heal, and he developed an infection that spread like wildfire. He was inevitably hospitalized, and when I visited him shortly before he had reconstructive surgery, his hospital room smelled like rotten eggs and death. His ruined elbow was the size of a football, and it would never function properly again. Today, decades later, he still wears a large, medieval-looking brace on his elbow, the legacy of neglect and reckless disregard for his health.
Another thing I’ll never forget is a scene from the superb National Geographic documentary “The Last Lions.” (Created by the husband-and-wife team of Derek and Beverly Joubert, it is now available on DVD and Blu-ray.)Shot in Botswana over six years and culled from hundreds of hours of high-def video, this exceptional film follows the elegant, recently widowed lioness Ma di Tau (“Mother of Lions”) as she raises three cubs in a harsh environment full of potential predators. One of the cubs is attacked by a crocodile, and although it briefly manages to escape, its back is broken and its hind legs are paralyzed. Faced with a “Sophie’s Choice” to rescue the injured cub or abandon it and save her other children, Ma di Tau instinctively does what nature has programmed her to do: She gazes (sadly?) at her helpless cub as the crocodile approaches, then slowly turns and walks away. A moment later, the injured cub is devoured.
As edited, it’s one of the most heartbreaking scenes in the history of wildlife cinematography. As I watched it I started sobbing uncontrollably, not just because I love big cats but because the parallels were obvious: That injured cub was me. And you. And anyone else who’s been paralyzed by illness or injury. In the wild, we’re all equally doomed. Mother Nature wins. Take away our wheelchairs, our antibiotics and rehab clinics and we’ll all be dead in a week or two.
All disabled people survive through the artificial means of modern technology. To which I say, so what? There are plenty of viable life-choices within our limited options. If you can’t focus your passion within those limited post-injury options, you’re not trying hard enough. If you dwell on the negative and neglect your health, a miserable life is virtually guaranteed. It’s also guaranteed that life will throw you curveballs (as happened to me), and you’ll have to meet those challenges as they occur. And if you want to keep Mother Nature from killing you prematurely, stand up to that bitch and keep yourself healthy.
Born and based in Seattle, freelance writer Jeff Shannon was injured on the island of Maui in 1979 (C-5/6 quadriplegia) two weeks after graduating from high school. While participating in pioneering research involving functional electrical stimulation of paralyzed muscles (FES), he studied film history, theory and criticism at Wright State University in Dayton, Ohio. Back home in Seattle, he was a prolific film reviewer and entertainment reporter for the Seattle Post-Intelligencer (1985-92) and provided freelance film reviews for The Seattle Times since 1992. He was the assistant editor of Microsoft’s “Cinemania” CD-ROM and website movie encyclopedia (1992-98), and was the original DVD section editor in the Home Video department of Amazon.com (1998-2001). In addition to writing occasional articles for New Mobility magazine, Jeff served two three-year terms on the Washington State Governor’s Committee on Disability Issues and Employment (2005-11) and recently contributed video-on-demand reviews for the late Roger Ebert’s website (2011-13). Most recently living in the Seattle suburb of Lynnwood, Jeff’s interests included reading (mostly non-fiction), music of all kinds (mostly rock, prog-rock, vintage jazz and ambient), science fiction (literature and film), photography, history, dinner with friends, disability advocacy, and watching copious amounts of (mostly) high-quality movies and TV shows. When pressed, he would agree that HBO’s The Wire is probably the greatest
How did you react to Jeff’s post? Please share your thoughts below.
Hello Jeff I briefly read through you article and I find it touching and inspirational. I’m a quad c 5-7 and I’m really glad I took the time to read this. I THINK YOUR GREAT !!!!!!
Terrific piece. Jeff sounds like he’s in the big, wide world and would enjoy sharing movie views every bit as much as sharing his personal motivation. I look forward to reading more.
I assume it’s OK to forward your site and spread the word?
Belated thanks for the kind words, Jane! And yes, by all means, share these blog posts as widely as you wish. The more readers the better!
Your record of achievements has set a pretty high standard for the rest of us quads to ‘aspire to.’ Great blog, and I look forward to reading your future ‘revelations.’
We wanted to share some of the comments that were sent to us directly:
Wow… very good writer. I often read the first couple sentences of a blog post, then it’s on to something else. Not with this blog. Nice addition to your web site. –Jim
Not only is Jeff Shannon an amazing person, but he is also an excellent writer. Thank you for sharing this with me. –Harriet
Jeff’s blog posting was absolutely wonderful! I am not kidding when I say that his article was one of the most insightful, raw, real, heart-wrenching, but ultimately inspiring things that I have ever read. I can’t stop thinking about his article, it was so powerful, and I think it’s wonderful to include his insight in the future. I think he is a great addition to FacingDisability.com, and I look forward to reading more. Please pass my message along to him. –Brian
Another comment sent to us directly:
Thanks for sending Jeff’s first column for Facing Disability.
I was shocked by Jeff’s honesty. It’s so rare to read truth, without sensationalism, without pop psycho-babble, without candy coating. Jeff seems committed to sharing his actual experiences with his fellow travelers in the most candid and heartfelt and useful way. Thank you for bringing him to people who need to hear his voice.
Wow! Each of your posts resonates with me, but this one the most!
Sensational writing and observation.
I’m in an all out war with Mother Nature. Score: she’s 2. I’m 0. Stopped me in my tracks, she did. Infections, GI changes, brittle bones, and skin breakdown from loss of collagen for starters. Unfortunately, as a quad, the tiniest of owies can lead to a fatal situation.
A lot of “if I would have known back then” moments has motivated me to get the word out to newly injured SCIs about good practices to follow. Hopefully, my web site http://www.adaptEvolve.com will be live by week’s end with advice along with solutions and suggested products to help even out the playing field in the quest for independence.
This site and your blog posts, Jeff, are so valuable. I hope you’ll allow me to link back with you because I want everybody to read this blog post about Mother Nature and the lions.