Actor, director, teacher, and caregiver advocate Donna Thomson is also the author of the book, The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving, about life after her son born with cerebral palsy. Her blog (The Caregivers’ Living Room) examines how social innovation can help families thrive, even in the most challenging of circumstances. Today, Donna continues her advocacy by consulting to hospitals and research projects, representing the interests of patients and families like her own. A new book, The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver, is co-written with Dr. Zachary White (The Unprepared Caregiver).
Donna: I have multiple identities, for sure. One is as a theater professional, because I was an actor and a director before I was a caregiver. I realized I also wanted to do social justice work, so I completed a bachelors in education, and became a teacher. Later, I did a postgraduate degree in theater in education. And I did community work in teaching and using theater as a teaching tool about health issues such as HIV. It was clear to me that I could use theater as a social justice tool, so that became quite a passion of mine.
Then in 1988, when my son Nicholas was born, I also became a mom. He was born with cerebral palsy, so for 23 years we provided complex care for him at home in a home ICU setting. I was his primary caregiver. I remember thinking: if Nicholas dies, I won’t know who I am. Despite my background, and all these other things that mattered to me, my whole identity, once he arrived, was as his mother.
I’ve also been the wife of a diplomat – a role that’s a little like being a military spouse. That is a role unto itself that was sometimes at odds with my role as a disability mom. And my caring life was completely separate from my role as a diplomatic wife. It wasn’t an uncommon occurrence for my husband and I to be hosting 30 people for dinner while Nicholas was upstairs with a nurse. For many years, I didn’t intertwine the two realities. The people downstairs didn’t know about Nicholas’s extensive needs, and Nicholas didn’t know about the people downstairs. In a lot of ways, it felt like I was living a double life. And I remember thinking that I could never explain these dual realities to anyone.
Later, I became a caregiver for my mum. And now I’m a bereaved daughter. These are all different principal identities in my life. But even so, they coexist. For me, they’ve overlapped without touching. But they’re all me, even so.
No, he’s 30 now and since the age of 23, he has been living in a nearby care home. Of course, we still care for him a lot. But it’s not the same as having him at home and coordinating all of his care. That’s a full time job that I no longer do. So now he’s in long term care, with 24-hour, 1-to-1, awake nursing care. Which is crazy to think about … that’s what my husband and I were delivering to him every day, for 23 years. When other caregivers say “I’m tired”, I deeply understand.
I shared the responsibility of caring for my mother with my sister. She took care of the daily goings-on because she lived in the same city as my mom. But I would come and spend, say, a week at a time with my mom. It became fairly intensive for the last 10 years of her life. Previous to that, it was always just looking after her. But between the ages of 86 to 96, she had become very distressed. She was not happy about being dependent, and she acted out a great deal. She was a hard person to care for in many ways, but on good days, she was very funny and full of life and rebellion. Despite that, and despite what I had going on at home, I did everything I could to keep her happy and comfortable during those years. I owed it to her in much the same way I owed and continue to owe it to my son. I think as caregivers, we all do our best.
I’ve gained many advocacy skills as a result of my husband’s job. He was a senior government official who worked very long hours and travelled a lot. Our family was posted to the UK twice which worked well for Nick’s needs. He was head of Global Security for Canada and then became the Canadian ambassador to the UK (known as the High Commissioner). He was in the diplomatic service for 38 years, and I learned about strategic advocacy from talking to him about how to build consensus. For instance, How do you influence large, immovable institutions to do your will, to change, to accommodate your needs? He and I worked together to advocate for funding packages for Nicholas when we went on postings Whenever we talked about his challenges in government, I wondered: How could I make Nicholas’s life better? How could I use our circumstances to heighten the chances of a better life for our family?
For example, we were posted in England between 1992 and 1996, and in 1994 I was able to get Nicholas into our neighborhood school in London with the level of support that he needed. It was a little state school; it wasn’t a private school or anything, and it worked out really well for him. Then we came back to Canada, where they said that he needed to be in a special school. But I wanted him in the mainstream. He’d done fine in London, after all. So I went and had a meeting with the school board. I showed them a video that we’d taken of Nicholas when in England, doing wonderfully in the classroom. I basically said that we wanted him to be included in a mainstream reality, that we were owed that by law. And it worked. I don’t think I would have been able to get that necessarily, if I hadn’t really been using my strategic knowledge of how to sort of … use countries against each other. [Laughs.]
The theater and education work I’ve done really honed my interest in storytelling, as a writer and activist, because I use my writing as an activism tool. I really rely on the personal narrative as the main quill in my quiver, if you will. And I think a lot of that belief in the narrative form comes from just being so curious about people, and about people’s deeply personal experiences. I’m so curious about that, and caregiving is one of the most dramatic events in life that pushes forward our narratives. I’ve found that the stories of caretaking are so often secret, or not discussed. I think they deserve to be out there in the open.
When you run into problems, see them as an opportunity. Use a closed door as an advantage to open another. And then build a coalition of people who care … of friends and family who can each contribute something to a creative solution. I believe that caring is best done as a team. I think that seeing the refusals of others, the things that people don’t want to give you, as personal ammunition is a tool not many use, but should. Don’t let anyone close the door on you without knowing that there will be another door opening someplace else … someplace better, very soon.
Interviewed: 23 October 2018, by Rajiv Mehta; edited by Julia Rubano
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