Interview with Mark Miller
Life and Acquired Brain Injury.
Life was pretty good in the years prior to my stroke and acquired brain injury (ABI). I had a loving family, was married, and had a career as a Sales Executive for Telecom in BC. For my honeymoon we went to Guatemala. My partner was a Dentist and we spent our time there providing dental care to Guatemalans and I supported her as a Dental Assistant. Then nine years later, I suddenly found myself single again and unemployed as I was laid off from my job. Being the kind of person who likes to be outdoors and giving back to the community, I decided to take a posting with a NGO to work in concert with the United Nations and went to Tanzania to help build wells for the Masai tribes in Africa. During my time there I contracted Malaria and Typhoid at the same time. I became dehydrated and subsequently developed a blood clot, which is not normally associated with these diseases, and ended up having a stroke.
During my stroke I experienced all of the symptoms and outcomes associated with this crisis. These are described in the acronym FAST. I experienced face drooping (F), my arm dropped and lost its function (A), my speech suddenly became affected (S) and I needed to get to the hospital as quickly as possible as timing is important for treatment (T). Unfortunately, being in Africa assisting the Masai tribe meant there were no ambulances or hospitals close to me. As a result, it took upwards of 36 hours in a regular vehicle to get me to a hospital. I spent three weeks in a Tanzanian hospital and could not be flown out because of the swelling in my brain caused by the stroke. By brother quit his job and flew to Tanzania immediately to help me recover. The hospital in Tanzania was adequate and was run by the Aga Khan Health Service in Dar Es Salaam. It is a not-for-profit health service in that country. They provided good care and kept me alive with the appropriate supportive measures. I had some physiotherapy and rehabilitation while I was there.
Through a family connection in the United Kingdom, I was flown out of Tanzania a month after my stroke on a first class commercial flight thanks to air mile points from my Uncle. Once I landed in the United Kingdom, I was then transferred to a commercial flight back to Canada and was flown first class back to Vancouver (thanks to my family member using their ‘points’). When I landed in Canada, Pacific Western Airlines were very generous and flew me free from Vancouver home to Victoria. This kindness and generosity that was given to me was just the beginning of my journey to recovery. My story was an international one and I was on the Canadian news, in the newspapers and even people at the Border knew who I was.
The Kindness of Family, Friends and Strangers.
While I was in Africa and recovering from my stroke, unbeknown to me, many friends and people in Canada were organized by my friend Lisa for a fundraiser. They raised about $30,000.00 to assist me with my rehabilitation and care requirements on my return. Organizations like Trail Appliances, who did not know me, would give money to this fundraiser. The community was phenomenal and it reminded me that love can come out of a crisis. The money was used to pay for my physiotherapy, rent and other expenses as I was not able to return to work. My mom is also a ‘Grizzly Mom’ (defends her cubs), and advocated for me with three different Physiatrists in Victoria to accept me in to a rehabilitation hospital. Within a week of my arrival, I was in Victoria General Hospital on the 5North ward which was for stroke patients. After two months of amazing care and rehabilitation, I was able to walk around the unit on 5North and was able to walk out a short distance without a Wheelchair.
My sister was living in Australia and she came to Victoria to care for me after I was discharged from the hospital. It was important to me to try and live independently and not move back to my parent’s home. I was 46 years old at the time and my sister stayed with me for four months in my apartment and helped me to become more physically capable. I still had problems registering things I could see on my left side (as my stroke was in the right-hand side of my brain). My left hand was still paralyzed but my left leg was getting stronger. She assisted me with my exercises, walking and other things along with the outpatient therapy I was also receiving.
Living Independently and Ongoing Recovery
After my sister left, I was able to live independently, supported financially by the Canada Pension Plan Disability Program, Government support, and more recently some BC COVID Grants. It has taken a lot of time to recover further and after 10 years I am still disabled and unemployed. I had to relearn to do things that many people take for granted. For example, just the ability to talk on the phone or do a few things at the same time was like running a marathon. I would get very frustrated and get angry as it was difficult to manage emotions after the stroke. I had to learn to celebrate small gains that many people would find insignificant. For example, having a bath for the first time felt like climbing Mount Kilimanjaro. Many years after my stroke I was able to feel a fly land on my arm. It was the first time I felt something on my arm that was that delicate. I was so excited as it demonstrated I was still recovering.
I was able get a certification as a Community Support Worker with the Cridge Centre in Victoria. Following which, I got some contract work with them to assist individuals with brain injury to find employment. However, once COVID hit I was not able to continue with that work so I was only there for four months. However, over the past 12 years since having my stroke I have tried to continue with my own values around giving back to the community. I mentor people that have acquired a brain injury as well as those who have had a stroke. I remember my own experience, when a young woman came in to talk to me about my stroke, which led to me experiencing a lot of optimism about my recovery. So, I have been volunteering with the Heart and Stroke Foundation and facilitate the Living Well After Stroke program. It is important that both the survivor and their partner caregiver get support. The program has a lot of suggestions for physical exercise, cognitive work, nutrition and other ideas for recovery.
I am also thankful to the many programs and individuals that supported me in my recovery as I would not be where I am today without their marvellous support. I have noted some of these organisations below.
1. Two different organizations, ‘Recreation Integration Victoria’ and ‘Power To Be’ focus on getting people out and active and I was able to get out onto hiking trails, and kayak and canoe with adaptive paddles so I could paddle with one arm. I was also able to fish again through the invention of a great guy - John Pimlott of Fishing for All Nanaimo (see link below), go zip lining and even rock climbing thanks to the support of the people in this program. I joined the board but that organization is now winding down.
Me fishing: https://www.youtube.com/watch?v=0cUFnegJyo0
2. The Heart and Stroke Foundation.
3. Home care services that supported me in the earlier years of recovery before I became more self-reliant.
4. The Disabled Sailing Group – and I am going to join the Board of this organization.
5. The many Physical and Occupational Therapists and Social Workers who worked with me.
6. The Victoria Brain Injury Society and Leidi Fortner who is one of the amazing Case Workers at the Society and runs the Coping Strategies workshop. My Mom initially wanted me to go to the Victoria Brain Injury Society to access their support and resources but I resisted a lot as I did not see myself as having a brain injury. However, in hindsight, linking in to this society was one of the best things I did as I was able to develop good coping strategies and recognise that having a stroke is a brain injury.
7. Family and friends. All of them played a different role in my life and contributed to my healing. I was amazed by the kindness of old friends who checked in on me. Of course, my wonderful family has also been a wonderful support and I am very grateful to have them in my life.
Life Today and Giving Back
I now live independently in an apartment in Victoria and it is very gratifying to be able to do that at the age of 58. I am still recovering and have impairments on the left side of my body (hemiparesis). I recently achieved a personal objective, and was able to walk one kilometer by myself with my walking pole. Doctors have expressed their amazement about my ability to live independently. Some of my friends who I know from elementary school and am still in contact with say I am about 60% of what I was like before. This is a great thing as some stroke survivors do not return to the way they were before.
I have learned that you can do amazing things with one side of your body and an altered brain and have become a bit of an engineer. It took some time to get there though. In the early days of my recovery, if someone unknowingly handed me something on my left side, I would get very angry. However, I learned that they were complimenting me as they did not see my disability. But because of the difficulties of managing emotions at the time it was hard. I had to work through a range of challenging cognitive deficits as well as the physical ones. Just getting through these daily life challenges is rehabilitation and therapy in itself, and overcoming them gives you an incredible sense of accomplishment. When I was discharged from my outpatient rehabilitation program I was upset. However, I quickly learned that getting through every day was a therapy session in itself. So, I followed the guidelines given to me by my therapists and I recovered further.
The brain is an amazing thing and can recover a lot of its function. I use the example of a cabin and it’s outhouse to describe recovery. If you have a trail between a cabin and an outhouse you follow it all the time. But one day a tree falls across this trail and you can’t get to the outhouse! The tree falling is like suddenly having a stroke. You would learn to go around the tree and create a new trail to get to the outhouse. In terms of recovering from a stroke, your brain learns to create new trails to enable you to do things that you were able to do before (this is neuroplasticity in action).
I still have challenges and one of these is spasticity in the left arm and leg caused from the stroke. I have been receiving treatment for this. I was initially getting BOTOX injections to reduce the spasticity but have moved to a program where they use cryotherapy (ice) to reduce spasm. This involves injecting ice in to the leg to reduce spasm. It works very well and I go for this treatment every three months. They may start this program on my arm and I am prepared to participate in this program if it means it can help other people in the future.
In terms of my mobility, I am able to walk with a walking pole. I have a scooter which gives me a lot of freedom as I can travel for up to nine kilometers on one battery charge. So, I am able to get my grocery shopping done, and visit family and friends.
I give back to the community the best I can and participate in research programs that might benefit others in the future. I have participated in studies at the University of Victoria and through a program offered by Dr. Paul Zehr, I was able increase my walking distance mobility by 30% in two months from training on a treadmill and riding a stationary cycle. Through Dr. Zehr he linked me up with the previous CEO of the Heard and Stroke Foundation who then enabled me to start speaking with stroke survivors at that Foundation. I am also thankful to Dr Pierce and Dr. Courtney who helped me with my gait progression at the Queen Alexandra Centre for Children’s Health. I also participate in the neurology class at the West Coast College of Massage so students can learn about what it is like to have a stroke and how they can be part of the recovery process. I also participate in a peer support group through ZOOM at the moment due to COVID that is run by the Disability Resource Centre. It is a stroke and aneurysm support group that meets once a month.
When I think about the future, I have big aspirations. I would like to be an international speaker and mentor as I feel I have been put in to this position to help others. My mental attitude was a huge prop to help me get better. Through my observations I feel that people who were positive before their stroke are more likely to be positive in their recovery and those who were more pessimistic before their stroke remain pessimistic in their recovery. I am a happy person and if I can help people to be more optimistic in their recover that is a good thing. I am fortunate to have a loving and supportive family. Not all people have these mental and familial resources so I hope I can help them.
When my brother was caring for me in Tanzania, he asked me a question as to why I think this happened to me. I thought about it for a while and said, “ I guess I am meant to teach people”. Since my stroke I have tried become a teacher and mentor through the various organizations I have been able to work with. I want people to be optimistic about their recovery and to learn to be grateful for the small things they will experience in their recovery. I want them to recognise that there is amazing support in our community and health care system for survivors of stroke and acquired brain injury. There is also a lot of love in our community, and if I can show by example how to be happy and content with my new body and brain I can spread this love. Then I am happy.
Thank you for reading my story.