'It very much feels like my body has betrayed me': Grappling with the gradual symptoms of disability

By 2014, Bronwyn Berg's life had gone through some major changes. Her children had grown up and left home, her divorce was finalized, and she had moved from Calgary, Alta., to Kelowna, B.C., to start over.

"I felt like I was a passenger in someone else's life, and suddenly I found myself in the driver's seat, which was both scary and freeing at the same time," said Berg. 

Now in her 40s, Berg had enrolled in a university creative writing program. She felt like she was in a really good place. And then one night in early 2015, she was hanging out at home with some friends when all that came to a sudden stop.

'I really knew something was off'

Berg has no memory of what happened during what she calls a "freak hugging accident." When her guests were leaving, one of them picked her up for a hug and she pushed herself back to avoid it. Berg fell backwards and hit her head on the tile floor. 

At first, Berg was told that she'd had a concussion and would be fine. 

"About four months after the accident I woke up and I really knew something was off. And I've never walked again."

Following the brain injury, Berg has slowly lost control of her body. She has spastic involuntary body movements, and recently began to have seizures. Doctors have not been able to provide a diagnosis. 

"It very much feels like my body has betrayed me," said Berg. "I think anything that's temporary can be endured. You know you're pregnant for nine months; you know your cold's gonna be over in a week. I felt that way about my recovery. That I'm going to get better, and I just have to wait." 

But about a year later, once the doctors started to say they didn't think she would recover, Berg began grieving.

"I don't even have control of my imagined future. We're all in some ways temporarily able-bodied, because if we live long enough we're all going to be disabled at some point. I think I had to kind of let go of even the idea of control. I don't have it." 

Old coping mechanisms don't work anymore 

Berg realized her usual drive to persevere and work hard during difficult times was not going to work. The doctors told her she needed to rest. 

Her condition is gradual, and she is always developing new symptoms, so she feels her future is unclear.

"There's a lot of grieving and a lot of adjusting. So I can't quite get used to where my body's at because it changes so often."

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Berg said her expectations of life have lowered a lot. While her friends on Facebook are posting photos about their vacations, Berg is happy to simply get out of bed and make it into her chair.

The last specialist Berg saw told her that people like her often become bedridden and need to stay as active as possible.  

"That's probably how I got involved with activism. There were so few things that I could attend, that I felt very frantic that I was running out of time."

Berg noticed that many of the events she wanted to go to were inaccessible. Demanding accessibility helped her gain back some of her personality, she said, something Berg feels many people with brain injuries often lose. Activism has become one of her new coping mechanisms. 

Surrendering control

Berg said one of the hardest parts about her disability has been not being able to find self-esteem in accomplishments.

"I felt like I needed to — especially after my divorce — prove my existence mattered, by going back to school and by really accomplishing something. And all of a sudden I thought, how am I going to improve my existence matters now?"

Over time, Berg said she now doesn't feel like she is competing with others or have the same envy as people as she used to. It also means her interests are different than other people's. 

"You talk to disabled people, and we never ask each other what we do for a living. Because almost all of us have had to give up our careers." 

Berg has managed to build a new life. It's just a different one. 

"In some ways I think I just move through the world differently. And if people would just let me in … I feel very much like the world has cut me off."

Berg describes this feeling as "wandering through this world of doors, without any door knobs." Her partner is a double amputee with diabetes. Berg said she can relate well to him in feeling isolated. 

"But he knows other amputees and other diabetics and he can go to the doctor and get the help he needs. They know what's wrong with him. So for me, without knowing what's wrong with me, it is very isolating."

Despite this, Berg said she wouldn't want her former level of mobility back if she could. Life with mobility is something she's fully adjusted to. 

"I want to not have seizures. I want my movements to be under control. But as for mobility, I don't know if I could live in an able-bodied world again.

This story appears in the Out in the Open episode "Letting Go"