Living a 'Spirited" life - Spirit-U-ality, people's stories, rehabilitation-hope

What happened to Christina and Rehab in BC?

She was a beautiful young woman, her golden hair – thick and shinny, framed her sweet innocent face, one that was a breath of fresh air in my stale hospital room. I met Christina at GF Strong, the largest Rehabilitation Hospital in western Canada, and one which I spent 8 months at back in 2004. My own daughters and Christina were similar in age and she would often spend time with us out & about, or in my room as her family didn’t come around much, if at all.

I loved her youthful spirit and determination, she was so motivated and passionate to help make her situation be anything other than a life sentence of paralysis with no hope of recovery – at eighteen years old. Although the car accident that broke her neck and rendered her a quadriplegic was tragic, nothing to me was more tragic than Christina’s pointless death last November from self-starvation due to frustration and complete hopelessness at the lack of rehabilitation and support here in British Columbia.

Christina’s story is not unique. The incidence of depression, poor health, addiction and suicide run high among many faced with a tragic life circumstance like paralysis, especially in youth or those less advantaged financially and without family. According to the Canadian Paraplegic Association, about 900 Canadians suffer from spinal-cord injuries every year, and that number is generally skewed toward the younger population for the obvious reasons – car accidents and extreme sports, none of which, are on the decline.

“My legs were weak when I started,” Christina Clippingdale told the Georgia Straight in an article, (By Carlito Pablo, February 7, 2008) . “After the six months were over, my muscles were stronger. My muscle bulk increased. My bone density increased a third. My self-esteem was a lot better.” After the research was completed, she asked staff at G. F. Strong if she could continue using the bike. She was allowed to do so, and she maintained a routine of going to the hospital last year. Then, she was informed that she could no longer use the device.Clippingdale was then 21, and all she wanted to do is keep her broken body as healthy as she could.

That article was published in 2008, the same year the much awaited and anticipated ICORD and Rick Hansen/Blusson Spinal Cord Center opened. Christina’s hopes as were many, were resting on that center.I too, had great hopes for what was being touted and campaigned as The World’s leading center for spinal cord discoveries: CORD -Collaboration,Innovation, Repair on Discoveries, which was originally founded in 1995 by Dr. John Steeves with the support of Rick Hansen Foundation and then UBC president Dr. David Strangway. I was a patient at GF Strong when like Cristina, I had herd wind of a new ‘spine center’ being developed, that was in 2004.

Many of us with the brutal prognosis of quadriplegia, were eager and diligent at sourcing out the latest and most promising options and discoveries available anywhere for paralysis and were, of course thrilled to find out a center would be built here in our city. What kind of “center” it would be wasn’t exactly clear and, as in most cases of things taking form, this manifestation involved many interest groups and a lot of funding.

It began to stir up questions within the recipient community, as well as a ‘quiet’ undercurrent amongst the professionals that could be palpated in the air, at the only existing Rehab facility in Western Canada, G.F. Strong.What would happen to G.F Strong and rehab services, was the question already raising eyebrows, many of which we witnessed whilst patients as our rehab and available support services and therapies were being cut more and more by the newly elected government, right before our eyes.

G.F Strong was at one time a world leader in rehabilitation services and supports. It’s original purpose and mission was lofty and ahead of its time, and had respect and distinction for providing the most successful and thorough rehabilitation program for young vets. Following World War ll, there was a large influx of soldiers returning to Canada with permanent disabilities, and there was no facility located in British Columbia/Western Canada to accommodate their needs.

Dr. George Frederick Strong was a driven advocate for the building of a rehabilitation center in BC after his daughter sustained a spinal cord injury. Dr. Strong joined with the Western Division of the Paraplegic Association to realize his dream, and opened ‘GF’ in 1949. With a definitive mandate to rehabilitate and restore as much “quality of life” as possible to each individual, they developed ‘boot camp rehab’, “A (sought after) program which encourages patient’s to realize their abilities and set goals towards rehabilitation.”(Wikepedia)

That was then. By 2006 rehabilitation services in the spine program had dropped back from a full infrastructure with all support services available, to one third of what was offered to me in 2004, and I was in the second wave of cut-backs. At that time, stem cell research and excitement were gaining huge momentum, and paralysis due to spinal cord injury was one of the last on the bucket list as ‘medically unsolvable’ and high on the list of potential benefactors for “the stem cell cure”. It seemed the trend of the medical system and their fund sources had shifted from how to “restore & rehabilitate as much function and quality of life as possible”, to let’s find the cure.

In 2008 CORD then changed to ‘ICORD’, and according to their website this is what happened and what it was to become: “With the opening of the Blusson Spinal Cord Centre in November, 2008, many of ICORD’s multidisciplinary researchers are together under one roof where they can work closely together, and with people living with spinal cord injuries. This has accelerated the discovery, development, and validation of therapies and practices to promote full functional recovery and improved quality of life.”

Surely that would include rehabilitation “practices” and infrastructure, equipment and services that “promote full functional recovery and improved quality of life.”, what else would “development and validation of therapies” mean and how could we do that otherwise?

Recovery and rehabilitation from anything, we all know, is a process, in most cases slow and at times – painstakingly difficult. Therapy at best is also complex and generally expensive. The experience is a metaphor for life, nothing of true value comes easy. By definition the purpose of rehabilitation is to: “restore some or all of the patient’s physical, sensory, and mental capabilities that were lost due to injury, illness, or disease.”

“Rehabilitation includes assisting the patient to compensate for deficits that cannot be reversed medically. It is prescribed after many types of injury, illness, or disease, including amputations, arthritis, cancer, cardiac disease, neurological problems, orthopedic injuries, spinal cord injuries, stroke, and traumatic brain injuries. The Institute of Medicine has estimated that as many as 14% of all Americans may be disabled at any given time.” (Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, Seventh Edition. © 2003

The metaphor also is: We all need rehab. I’ve had to “rehab” from many ‘dis-ease’s’ like anorexia to natural occurrences like pregnancy, to unwanted misfortunes like concussion, bone breakage or love-forbid paralysis. Every one of us has to ‘recover’ from something. The real metaphor may be then: Don’t forget the basics in search of the golden egg or goal.

In the summer of 2009 I got a call from Christina, and honestly I didn’t know what to say to her as I listened, while through her tears and anger she told me she could no longer use ‘the bike’, the only light in her day that got her up and out. I tried to encourage her to get out and participate in research, something I had been involved with since the newly christened ICORD had opened, or come and learn from me in my living room or go to the local 50 year old pool the only local option publicly available for differently able as out patients, and yet I could hear the shift in her voice.

“What are they doing at ICORD? Christina demanded frustratingly. “Why do you bother with raising donations or doing research when none of it benefits us?” Good questions and truthfully ones I have been asking myself.”Without access to a functional-electrical-stimulation bike, Clippingdale is at a loss how to get exercise without the risk of injuring herself. “It’s very frustrating, and I find it very unfair,” she said.Bless her heart and may she be peaceful. Unfortunately due to depression and complications from not eating Christina Clippindale is no longer with us. She needed a SCI community rehab center. I felt like I failed this young woman, yet I could not offer her what she needed most.

For me as a massage therapist, yogi and extreme athlete, landing in these boots was one thing, what to do with what I got – based on my aforementioned perception and that of the prevailing breeze, is a whole other conundrum. I have chosen to let my body heal and to support that in the best way possible, that’s not easy with a condition like paralysis and NO professional guidance – but its working and I’m truly living science as my completely severed cord & paralyzed body defy the ‘norm’.

Without a doubt the reality and landscape for a person instantly and traumatically paralyzed has changed incredibly due to the above pioneer’s; not, for sure on all fronts, but nonetheless; and the world is a kinder place to land, in a wheelchair, than it was 10 and most certainly 20years ago. Things like the Federal Rehabilitation Act in 1973, to universal access, to public awareness and a variety of private & independent offerings, not to mention the advances in medicine and research efforts for paralysis. What hasn’t changed is the need for movement, rehabilitation and support services after discharge when the reality hits the fan.

I too, like sweet Cristina ( RIP) have taken the road less traveled in the community of ‘wheelies’, of seeking and noticing the physical and psychological benefits of movement, by getting rehab. I pay dearly for this and find like Christina did, a lot of frustration at why we in B.C., with two potentially top-notch facilities and many sources of private and government funding, have no active, state-of-the-art rehabilitation facility for ongoing treatment & side-by-side research of an ongoing, continually changing, scientifically important, debilitating, and socially expensive condition like paralysis.

After years of being touted as the best GF Strong in BC reduces services, ICORD touted as the place they would “innovate & collaborate” is a research lab, and if you want rehab in BC pay dearly and travel far.