As a child of 13 I suddenly found myself in the Calgary Children’s Hospital strapped into a Stryker frame—one of those sandwich contraptions that precluded any movement, flipping me over every 2 hours. It seemed impossible to me that only hours ago I had been at a gymnastics practice. After spinal surgery and then 6 weeks of immobility, I advanced to a body cast and then to a body brace.
An interesting note was not the offense of being in the Stryker frame but rather that I had gone from budding competitive gymnast in my mind’s eye to a disabled kid in the eyes of my care providers. I suppose at face value I should have been able to understand that I didn’t look like much of an athlete hanging in mid air unable to move. I recall feeling misunderstood and devalued.
During my stay in hospital an outbreak of the measles legislated that all patients were quarantined; thus my social spheres were limited to those of us on the ward. I recognized that my experience of pre-injury identity was shared with the other patients—many much worse off than I was.
Fast forward to 1979 when, as a newly graduated occupational therapist, I chose to relocate to the sunny Okanagan. I committed to the only available job at the local mental health center, not because I had a burning desire to work with the psychiatric population but because I could pursue a certain lifestyle.
As my life journey continued to unfold, this was exactly where I should have been; with a love for neurology, I was excited to work with early brain-injured survivors who were placed in the mental health boarding home program. A young brain-injured client who shared many of the same passions as I, including gymnastics, was admitted to a group home with a severe brain injury and was living with schizophrenic roommates. In a wheelchair, aphasic, and unable to speak, she began to mimic schizophrenic behavior. Watching this young lady struggle caused me to revisit those old 13-year-old feelings of being misunderstood and devalued. I was quite certain that she did not see herself as she presented, but rather as she was before this life-altering injury.
I reasoned that if a client with a traumatic brain injury could learn what she was being exposed to, then it appeared that learning was indeed taking place, I surmised “Shouldn’t the clients be at home where things are familiar and they can relearn what they used to do?”
With the energy that only youth avails, I was a woman on a mission to advocate and secure funding for the brain-injured clients in my group homes to return home with support and supervision. The results were astounding. I began to document what scenarios were successful and which were more challenging. Sensory overload in many variations was frequently the culprit when there were suboptimal outcomes. If I could better understand how the brain was processing information up to the point of sensory overload, I could rewind the events so that, in the future, these hot spots could be avoided.
After years of careful observation I created a template that resulted in an in-house training program for my clinical staff that you will see unfold in the following pages.
The success of this approach was astounding; as a result referrals came in from Western to Eastern Canada and from as far away as France.
Clients with Glasgow coma scores of 6 to 8 were getting married, having children, and becoming gainfully employed. Clients with Glasgow coma scores of 5 or less were returning home, enjoying the community, and, on occasion, getting married. I also witnessed that returning brain-injured persons home came at a cost to the family members, often resulting in health problems or relationship breakdown. I understood that if I could successfully advocate for service provision to the family as well as the client that the overall outcome and relationship breakdown could be averted.
It was an interesting process to advocate and find ways to educate funders to see the wisdom in approving funds to be spent on the family as well as the injured family member, thus protecting the family unit.
The purpose of this book is to share my 26 years of clinical experience with the traumatically brain injured; my hope is that more specialized training will be delivered at an educational level to any student who will eventually work with brain-injured survivors. I hope that this model will contribute to this need. Once understood, this method is simple and easy to carry out at little cost other than manpower. It is not bound by politics, religion, economics, or culture. It has been rewarding to review worldwide research, which generally culminates in a conclusion that standards of care and practice need to be established for more and improved universal standard service delivery for the traumatically brain injured. I would like this text to contribute to this discussion.
I hope this book will serve to provide structure to the varying levels of the recovery process and to inspire hope just as those very clients inspired me.