The Mantra That Helped Me Get Through Becoming Disabled
Like many people, I have a mantra that helps me wade through times of stress and uncertainty. Like most mantras, it is a simple phrase with a layered meaning. My mantra “Survive and Thrive” has three such layers, each more complex than the last.
It is, of course, about survival. It’s about surviving in spite of the odds, pulling through and skirting death in the face of overwhelming obstacles, adapting and learning to navigate in a new body or a new way to live. When we think about survival, we recall news stories of rescues and natural disasters, movies where the protagonist lives despite tremendous injury or the human race carrying on after the planet becomes hostile. But there are other stories about the quiet personal struggle to survive. These stories are playing out in hospital beds and psych wards and rehab facilities all over the world. When you have stared Death in the eye and lived to tell the tale, survival becomes a very tangible but sometimes elusive concept.
But it’s not just about surviving; it’s about thriving. I don’t want to survive if I don’t thrive. A decade ago, I contracted a near-fatal illness that put me in a coma for six weeks, bed-confined in a hospital for 18 months, and rehab for two-and-a half years. It was the most excruciating, terrifying, confusing time in my life, and for most of it, I wanted to die. Life can be a beautiful, fulfilling, exciting experience. But it can also be a depressing, painful, frightening experience. When I feel this way, survival doesn’t seem so attractive anymore. Who wants to survive only to live a hell on earth? This is why thriving is just as important as surviving. It’s not enough just to survive. I need to thrive, and the more I do, the stronger my will to survive.
The last layer of meaning to this mantra is a personal, defiant kind of “f**k you” to the universe. After eight months of lying in a hospital bed, barely able to move, with a tracheostomy and feeding tube, wearing diapers and unable to bathe myself, I was horribly depressed, angry and desperate. I attempted suicide in an effort to end my nightmare. When I went into rehab, I cried in the mornings when I woke to find myself still alive and in terrible pain. I prayed something or someone would kill me, and I fantasized, even dreamed about how it might happen. Yet I still worked hard every day and went to bed exhausted, because what else could I do?
It was either get on with the business of dying or get on the business of living. I figured, if the universe wasn’t going to let me just die, if the universe was going to force me to survive, then I was going to be the one to decide how I would live. And it wasn’t gonna be languishing in some long-term care facility, helpless and forgotten.
So I worked. Every. Single. Day. And I still work. The work is not nearly as hard anymore, or as painful. In fact, it’s just a matter of course for me now. But my life? It’s good! It’s not perfect, but life was far from perfect when I was able-bodied. In fact, I’m happier now! So I haven’t just survived, I’ve thrived, and I hope all of you can do the same.
Actor, writer, aspiring director, and Netflix binger. In 2009, I developed a rare neurological autoimmune illness called Bickerstaff Brainstem Encephalitis (a variant of GBS) from a series of vaccines. As a result, I live with disability and chronic pain, and use a power wheelchair. I became acutely aware of how differently I was treated by society compared to when I was non-disabled, and felt compelled to share my experiences. I write stories about my life as a person with a disability as a way of processing my experiences, and in the hope that others who share similar experiences feel validated, supported, and a little less alone. I am a member of the Realwheels Acting Academy in Vancouver, BC, run a Facebook page called 'A Day in the Life of a PWD', and create comics about the giggles and gripes about living with disability.
jenniferburgmann