We Are Here To Learn: Interview with Leonard Regan
My acquired brain injury
I sustained my brain injury in April 1974, when I was 21. I was young, having a good time with friends, enjoying some drinks as we did at that time. At that time, drinking and driving was not illegal and was fairly common. As well, seatbelts were not mandated. Fortunately for everyone, times have changed!
I was living in Cowichan and had come to Victoria on a Friday night. My buddy’s girlfriend needed to get back home and it was late so we all piled into the truck to drive back home. I was in the middle of the seat. Unfortunately, on the way back, somewhere on the Malahat, my friend lost control of the vehicle and we had an accident. The truck rolled four times. The truck had a gear shift on the steering column but there was no ball on the end of it. So, it was essentially a piece of metal about a foot and 1/2 long. So when the truck rolled this gearshift piece of metal pierced my cheek, through my jaw, through the middle of my skull, through the sinus, the temporal lobe and lodged in the parietal lobe of my brain and almost popped out the other side. The chip fracture from my jaw was lodged by the tip of the gearshift in the right side of my skull. My brother told me that the neurosurgeon sent him to find the gearshift from the wrecked truck. I still have it. The gearshift still had a core sample & bone fragment and Dr. Cameron then confirmed that there was a chip fracture from the jaw bone lodged in the right side of my skull.
I spent a long time in the hospital, close to a year, I think. I couldn’t walk or talk very well initially and I underwent many neurosurgeries. They kept me in a wheelchair and strapped me into bed to prevent me from accidentally trying to get up. I remember a piece of my skull was removed and put in the fridge for several months while they sealed and cauterized all the small veins in my head that were bleeding. They drained fluid out of my head several times a day to prevent the swelling, otherwise, it would have compressed my brain and and perhaps been lethal. Some of my injuries included hemiparesis, a tremor, foot drop and a partial paralysis on the right side of my face caused by a sixth cranial nerve palsy. Now, some 45 years later, my remaining symptoms include a loss of nerve sensation on the right side of my face, clipped carotid artery, residual, intermittent nerve pain in my face, and prosopagnosia. Prosopagnosia is the inability to recognize faces. It has come to the attention of the public these days, during the pandemic, and the regular wearing of a face mask. And I think to myself, welcome to my world! When I tell people I don’t recognize faces, I sometimes get a response from others that they too have difficulty with that because of the masks. But I can assure you it’s not the same. I have had more than one incident of not recognizing my children, my wife, my friends, myself in photographs and my colleagues. It is by far the most debilitating of my injuries.
On the upside of my journey of recovery, I got to participate in several clinical studies of my condition called prosopagnosia. I had the opportunity to travel, meet others with a similar diagnosis, and participate in research that helped identify where facial recognition occurs in the brain. I found them very interesting and learned a lot about myself. Hopefully I have contributed to the field of brain science.
Some links to the studies and researchers that worked with me are noted below;
One of the lasting deficits from the injury is my inability to recognise faces. This is called prosopagnosia.
I did not receive any specific rehabilitation for my injuries other than the medical care I mentioned above. When I was ready to be released, I moved in with my sister for almost a year. I had to use a wheelchair initially but later got by with a cane. I had very poor balance, ataxia, a little frustration tolerance, constant headaches and nerve pain, I was taking a large daily dose of painkillers. I had some left-sided weakness and foot drop. But by far one of the most debilitating effects was my loss of self. I was no longer the same person I had been prior to my accident. I had significant anger management issues and would be triggered quite easily into a rage where I would roar and sometimes smash things or people. At other times, I could be watching a commercial and then break down in uncontrollable tears. My speech was slow, I slurred a lot, could not think clearly and would fixate on things. My sister described this time as being the worst of both worlds. I was grouchy like an old man and silly like a three-year-old child. I am very grateful to her and her family for caring for me and putting up with me at this difficult time. I’m sure I wasn’t an easy person to be around.
My early Days of Recovery
I lived with my sister in her basement for a couple of years approximately.
I learned how to take the bus by myself without freaking out or having any incidents although there were a few in the beginning. I was trying to find out if my brain still worked, and although I had never finished high school, I realized I could enrol in college as a mature student because I had been out of school for more than five years at that time. I also thought it was a safe place to hide out, where not too many people would bug me, plus I could get student loans to bring me some money that was better than welfare. I was curious as to whether my brain still worked, and whether I could remember things, or learn new things. I enrolled in some courses at Langara College in Vancouver and decided to take courses that did not matter to anyone if I passed or failed, but that I was interested in. I enrolled in courses like art history, sculpture and philosophy. What was transformational for me was the Philosophy 100 course. It covered many of the issues everyone struggles with such as identity, truth, honour, integrity, and the meaning of life. Socrates, Plato, and the like, were down to earth in their discussions about the issues that confront all human beings in understanding the universe, society, and our place in it, and are still relevant to this day. Philosophy is often thought about as being esoteric elitism indulged in by those with money and too much time. In ancient days life was not like that and none of the great philosophers graduated from high school. Unlike many of the modern philosophers they were not interested in going around in circles chasing their tails with unanswerable arguments.
I could not read very fast and had to wear an eye patch on my right eye as It did not work. I would read out loud as this was my form of speech therapy. People avoided me at the college as I was intimidating at six foot four inches tall, and was wearing an eye patch. I was clumsy, inappropriate, and did not recognize people from one minute to the next. I had a few rage incidents, and was often angry and had a brooding kind of disposition. I still needed my cane to walk and to hit things with. One time I was in a grocery store and someone asked me if I was going to a Hallowe’en party because of my eye patch. I accidentally flew in to a rage and assaulted him and destroyed the store. I could not understand these rage attacks but they have lessened over time.
I also had a girl friend at the time of the injury and we still stayed connected after my accident but that eventually faded away. Three or four years after the accident the ICBC case was settled and I was finally able to move out on my own. I hooked up with a woman at that time and we moved to Montreal. She had several issues of her own, but was in recovery and was able to get her children back. And over time, some of the issues associated with my acquired brain injury (rage attacks, inappropriate behaviours, arrests, talking, memory, and mood-swings) lessened and things started to improve and I was able to develop a small social circle mostly through my partner’s connections.
After a few years I decided to end that relationship and go travelling. I ended up going to South America and spent a year on my own travelling through different countries. At least no one expected me to be able to recognize them which was quite a relief. I had a good trip and then returned to Canada. At this point I started to reflect on my life. I had been reborn so to speak after my accident, travelled, been robbed by policed in Colombia, learned some Spanish, was financially secure and had been frugal with how I spent my money. I was finding my self-confidence again. I found it hard to connect with old friends and tried going back to old jobs like tree planting that some of my friends were still doing, but was not able to physically or mentally do them anymore. So, I decided to do a cross Canada tour by train and ended up in St. John’s Newfoundland and stayed there for 6 years.
I arrived in Newfoundland just shortly after they had discovered oil offshore. There was a bit of an oil boom. I bought a couple of cheap houses and thought I would dabble in real estate and become a landlord. Houses were cheap then. I bought one for 18000 dollars and another for 35000 dollars. This, however, didn’t work out too well. But I got married and we had a daughter so that part was good. I had invested most of my money at that point and had to try and find a real job. Having not worked for over a decade, I had a pretty pitiful resume. I got odd jobs and ended up mostly doing demolition which I found somewhat therapeutic. At that time I opened a small store selling antique house parts etc. that I got from my demolition job. I was also improving my carpentry skills as I had to fix some of the broken down houses I had purchased. I had always been interested in alternative communities, such as communes and cooperatives. At one point I started pushing the idea that a workers’ cooperative would be advantageous to me and my fellow under-employed struggling labourers. I hatched and promoted the idea based on a tree planting cooperative that some friends of mine had formed. I was founding president of Atlantic Employees Cooperative, the first Workers Cooperative in Newfoundland. The Cooperative operated like a Union of contractors, and would take a small percentage of earnings and do the book keeping. We were democratically elected members of the cooperative to the various positions as needed. This structure essentially made them an employee of the cooperative which enabled them to collect unemployment insurance during the winter months when the work dried up. We had 45 or so members at our peak when I was president. Atlantic Employees Cooperative continued on for approximately 10 years after I had moved on.
I knew I had made a significant recovery with my acquired brain injury at this point in my life as I had successfully promoted, birthed, and managed the Atlantic Employees Cooperative for several years and the membership continued to vote me in as President which was a great show of confidence in my abilities. At one point, I moved on from St. John’s and opened a bakery with my then wife around Baie Verte, Newfoundland.
I learned to manage my inability to recognise faces by paying attention to other cues to remind me about who I was talking with. Their voice, their place, and their relationship to me were important cues. I am better at remembering furniture, clothing, location, than recognizing peoples faces. These various cues help me to remember the people I have to interact with.
When I arrived in St. Johns Newfoundland I got married and started a family. After 6 years we split and I moved back to the west coast. I became a clam digger on Savary Island and was able to buy a cabin from the work I was doing. My wife rejoined me, immediately became pregnant, and we moved to Victoria and had a second daughter. We could not stay on Savary Island as we had no running water, or electricity, and my oldest daughter was ready to start school.
Life in Victoria and My Service to the Community
I have lived in Victoria since 1989. When we moved to Victoria I decided to engage in further study and enrolled at Camosun College to become a Community Support Worker. While doing this study, I realized that I had a disability. Further, there were very little resources for people who had sustained an acquired brain injury. So, I joined the board of the Vancouver Island Brain Injury Society as it was called back them. I worked with Brian Burke and would lobby politicians for services for those who had acquired brain injury. During this time, we set up a very successful peer support group program which were organized more as philosophical inquiry groups. I was prone to community activism and joined many community organizations. I was a board member of the Action Committee for Persons with Disability and a member of the Board for the Disability Resources Centre where I was Chairperson for two years. I was also the Western Canada survivor representative for the Canadian Head Injury Coalition.
During that time, I was working as a Community Support Worker and spent eight years at Nigel House. Nigel House was part of the Vancouver Island Housing Association. After eight years of working at Nigel House I had good shifts, which gave me time to pursue other interests. As a result of my community advocacy in the brain injury community, I had been referred clients from some personal injury lawyers who would pay me well for supporting their clients. As a result of that I would get clients referred to me by ICBC for peer support, and assistance in housing and rehabilitative strategies. As a result of these referrals, I got to work with many doctors, occupational therapists, physiotherapists, Psychiatrists and others.
I was involved with the Pacific Coast Brain Injury conferences and established LW Rehabilitation Services. I did a lot of work with clients struggling with behaviour/anger management, paralysis, psychiatric, gender identity, depression, and philosophical challenges. I assisted clients also with housing, housing support and vocational & educational exploration/ integration. The support I was providing grew and I ended up working for myself and leaving Nigel house. I hired rehabilitation assistants like myself, giving preference to those who actually survived a brain injury. I incorporated the business a few years later as Kia Ora Rehab Services and took on a partner. A few years later we split, and I reformed the business as In Focus Rehabilitation Services which I sold to the March of Dimes in 2017. I have basically been retired since then.
Life Today and Lessons Learned
My brain injury changed my life. However, at this point in time I feel grateful and do not regret the path I was forced to take.
I am blessed to be in excellent mental and physical health for a man who is sixty-eight years old. I believe my functional capacity compares well to my non-injured peer group. I am in a happy place now and recognise that I have done better than many people who do not have a brain injury. I do, however, maintain an objective interest in my mental and physical health. I continue to stay abreast of breakthroughs in understanding of acquired brain injury. I try to challenge myself by learning something new on a regular basis. I exercise fairly regularly, and will return to swimming after COVID when I can.
I am now retired and a pensioner. I like to draw to improve my perception, enjoy cottage life when I can travel back to Quebec, and otherwise enjoy my life in my condominium here in Victoria. I am also sculpting and someday hope to sell something so as to validate my hobbies.
My relationships over the years have also blessed me with children and grandchildren and I have the comfort of a partner today. I am also grateful for the many people along my life journey that have helped me. When I started working as a Community Support Worker, lawyers like Lorne Sinclair, and Earl Shaw coached me on my writing and public speaking skills and I owe them a debt of gratitude.
A key factor in my recovery, which I hope is helpful for others to understand, is openness to new things. As the Greeks said, “we are here to learn”. And this has been key to my recovery. There is no need to reinvent the wheel. Observation has allowed me to reduce some of my problems to essential elements, analyze them and then look to see how other people in this world have solved them. This is where I drew inspiration from the Greek philosophers. I also learned to be a good listener, learn humility and let go of my ego, which made me a better person and more likeable to others. Learning to accept yourself and being comfortable with who you are is one key. Learning to be interested in other people, and accepting them for who they are is a second key. The third key is still a mystery… Hey that rhymes…
The landscape of acquired brain injury has also changed over the course of my life as a result of changes to how we use motorized vehicles. With the advent of seat belt laws, a greater awareness of how speed influences injury, and zero tolerance for drinking and driving, there are less acquired brain injuries from car accidents. Most acquired brain injuries today are from drug overdoses and they present very differently. This is a new challenge for those working with acquired brain injury.
Thank you for your interest in my story.