MAID and people living with a disability: Lynne’s story

Through a series of blog posts, we are examining each issue of the Parliamentary Review of MAID to inform and motivate Canadians to advocate for expanding the law. In this blog post, Lynne shares her honest and candid story about living with a brain injury and silent disability for the past 20 years. She sheds light on the struggles that people living with disabilities come up against every day in Canada and how she has navigated the world with her injuries since the accident. Lynne supports medical assistance in dying and maintains that people with disabilities must have the same access and autonomy to explore MAID if they wish. This is Lynne’s story.

On August 11, 1991, my life changed forever. I had just finished my degree in Education and was in the midst of finishing my last paper for my Honours degree in History. On my drive home, I was hit head-on by an oncoming vehicle that crossed the yellow line. I spent four months in Kingston General Hospital for treatment and rehab. The best time for healing from a head trauma is directly after, so it was necessary for me to stay with my family for a year. I could not grasp what was happening to me. I was more worried about the healing and rehab of my physical injuries to even take in all the talk about me having a Closed Traumatic Brain Injury. What was that anyway?

I wanted to be normal, myself. I felt like the old Lynne was dead and a new one, who looks just like her, took her place. I was now a brain injured individual with physical injuries and I wanted to distance myself from that person, so I spent many years in denial, drinking and hanging out with friends. That was not the most auspicious recipe for recovery.

August was to be my last summer, the summer before I started my career teaching full-time. My friend that I went to teacher’s college with just retired a couple of years ago. It is like I just finished school and woke up and my career was over. I missed the whole thing.

“Aren’t you lucky that you don’t have to go to work?” Every time I heard that, I wanted to scream and lash out, I just wanted to be Lynne again.

I was lucky enough to have a family that was there for the whole process from accident to lawsuit settlement, exactly 5 1/2 years, but even they do not comprehend the extent of my cognitive damage. I am high functioning, and my physical injuries are not evident, so I am able to fool people glibly into thinking that I am normal. It is once you get to know me, and spend time with me, that the deficiencies and abnormalities are evident.

Mine is a silent disability, one that is not directly visible to the naked eye like a cast or a wheelchair, so often people think I am lying about being disabled. I don’t know how many times I have told people that I would not say that I have a brain injury without actually having one. Once I mention that I have a brain injury, I can see the change in the way people see me. They deny the assertion, but I can see them mentally preparing to only partially believe what I have to say because of my disability. “What would she know?” whispering that she has brain damage.

I met my former husband at a party that I went to with friends – there a lot of people and a lot of booze – again, a recipe for disaster in the recovery game. We got married and I spent much of my married life trying to deny my brain injury and its effects on me. I was embarrassed and ashamed of being stupid, though I am told my intelligence was not affected, just my ability to access and use it.

It was much simpler for me to deny, deny, deny and make believe. It is not easy to live with me. My eccentricities, deficiencies and fatigue are not a recipe for a romantic partnership. A divorce, and two boyfriends later, I decided my brain injury and I are not conducive to long term, romantic relationships. My husband of 10 years left me; I believe he could not cope with the real brain damaged person under the surface. Although I was assured many times that my brain injury would never be a problem for us – not until it was. I had a couple of live-in relationships since my divorce, but they ended in tears as well for much the same reasons.

I have been on my own for almost 10 years, and it has been hard. I have been sober for 12 years now, as I am a recovering alcoholic. I could not handle the sense of failure and hopelessness that had become my life, so I turned to alcohol for solace. I finally had to sell my beloved house, after my last dog passed away, because of financial difficulties. Persons with disabilities are and have been living below the poverty level for years.

Accessing support is very difficult. There is so much red tape and almost no one fits into the strict criteria determined by specialists or politicians who advise the government in power. Consequently, to be determined able to receive support, whether it be medical or psychological, is next to impossible. Mental health and addiction relief is promised to be there for everyone; however, the waiting list is two years long or, you do not qualify. Some agencies don’t see brain injury as a mental health problem, therefore some of us have to beg and plead. We still find ourselves requiring assistance medically, psychologically and financially, all the while having limited places to reside.

I am supported by Community Brain Injury Services, which through Providence Care provides satellite support for those of us in my area in Ontario. An Acquired Brain Injury Rehabilitation Counsellor comes to my home once a week, and she assists me with planning and organization; executive functions that had been damaged in my accident. This support allows me to live independently. We are also fortunate enough to have access to a Neuropsychologist once a month. But, with cutbacks in all areas of our lives, the support they are able to provide is limited.

Now I live a very boring, quiet life. I am on the board of the Brain Injury Association in my area, which is a non-profit agency that supports brain injured persons, such as myself. Brain injury can take many forms from a car accident, stroke, tumour, drug-use or birth defects. We do our best to offer programs and support to anyone with a brain injury, from any cause. I have been attending fitness classes when I am able, and I am learning to knit. Trying new creative projects and learning new skills are helpful for my rehabilitation. I go to the Buddhist Centre nearby where I have learned the benefits of meditation and peace. Scientific studies have shown that mindfulness and meditation are helpful for concentration and focus, which are areas most brain injured persons struggle with. I love to read but wish that I was more technologically competent. I am left out of the virtual world. I see all the wonderful things technology can do and what it can assist us with, but unfortunately, I am not savvy enough to educate myself. Technological knowledge is one thing but the other is the expense of the equipment makes it impossible for the disadvantaged to take part in today’s world.

Our local Brain Injury Association is not funded, so we find ourselves constantly having to fundraise in order to keep the doors open. Many of our programs and facilitators have had to be cancelled due to lack of funds. At this time most of the funding seems to go to children or youth. We do not have the number of young people in our association to be accepted under strict funding guidelines. Fundraising is difficult because the general population is not really aware of brain injuries and the hardships faced by brain injury survivors, or other disabled persons. In fact, I believe that the general public has no idea how this country treats peoples with disabilities. There is a headline on the news, then it is on to the next headline with the former issue forgotten and never resolved.

I am luckier than most of my contemporaries, as I have an amazing medical and psychological team and have some financial assistance that others do not. Yet, I still find trying to live a struggle financially.

The life I had planned for myself was taken away from me, and now I am playing the hand that I was dealt. I have made many mistakes and have many regrets, but the way in which I choose to die is my own personal right.

I was given a second chance at life. But if the time comes, when I am no longer able to live in comfort and free of suffering, then it is my choice how my life is to end. I have had more than my share of pain and suffering, even now, without the trials of the terminally ill.

It would be wonderful if the lives of disabled or disadvantaged persons in Canada were able to be improved, while they are alive, but at the end of their lives there remains only their own private wishes. We, the disabled, are no different than anyone else, insomuch as we do not want to spend our last moments on this earth suffering.

I feel I have more than paid my life’s share of dues, and I would like to go to the hereafter in peace and comfort, not in pain. The life I had planned was taken away from me, so I plan on ending this one when my quality of life has deteriorated beyond what I can stand.

My life, my choice. 

Learn more about the Parliamentary Review and MAID and the protection of people living with disabilities here