Self-Loving Above Surviving

"Odyssey" created for the Brain Injury Society of Toronto's Expressive Art Show theme, Odyssey.

Source: Shireen Anne Jeejeebhoy

“When I was eleven.”

With those words, I began my non-fiction book Brain Injury, Trauma, and Grief: How to Heal When You Are Alone. In an earlier post here, I wrote about visiting my grandfather in the cardiac care unit when I was 11 But another sight affected me, as well:

“I stood in the sliding glass doorway of my grandfather’s cardiac care unit room. He lay white and still surrounded by humming machines and tubes in the hushed room. My father had gotten special permission for me to visit him. Back then, hospitals allowed only those fourteen and older to visit patients. I was eleven.

My grandfather croaked, 'Hello.' We stood around him, and in that moment, I wanted to help him heal.

As we left, I saw through the glass walls and glass doors of another room, a young man lying in his bed alone, no visitors. I felt his loneliness and fear. I thought, Children have their parents and families to comfort them in their fear, but who do adults have? Adults need as much comforting as children. Why do we pretend otherwise?”

That moment of seeing that one lonely man imprinted me. How ironic that I, like too many people with brain injury, later joined him in his lonely suffering.

I began my self-help book on healing brain injury grief with that anecdote because too often we journey through healing our brain injury alone. Even if a person is lucky enough to have a committed, supportive social network, loneliness haunts us because brain injury is unlike any other — and most cannot comprehend its tragic tarantula-like effects.

In an instant, the way our body works changes. Our brain no longer functions the way it has our whole life. We lose talents and skills. Who we are dies; a stranger's eyes reflect back in the mirror. If doctors treat the concussion immediately with neurostimulation and/or neuromodulation, we may avoid the secondary cascade that occurs over many months after the initial injury.

Symptoms worsen, new ones appear, yet other symptoms seem to wane. Life becomes harder and harder:

“[In 2000] I entered the hellscape of brain injury. My closed head injury, aka concussion, caused many losses. But I think the most destructive one was the loss of innocence. Innocence in my trust and beliefs. I lost trust in loved ones to be there through hard years, to support and help me find treatments to heal my injured neurons. I lost trust in physicians, psychiatrists, and neurologists to learn and do all they can to help me achieve full recovery. I lost the belief that my life was worth saving. I stopped believing medicine would treat me the same under brain injury care as under all other medical specialties. Health care professionals treated my injury unhurriedly, as if I have nothing to offer society unlike everyone else. Most profoundly, losing my reading and being abandoned, something unimaginable before the brain injury, rocked me like I’d unwittingly stepped on a bomb and had no parachute to land on sturdy ground.”

Years later, I found the parachute of neurostimulation and neuromodulation. But I haven’t found my place in the world yet. Why am I surprised when the ostracizing attitude that’s plagued humanity for millennia hasn’t changed?

Government policies may look like we as a society include the chronically ill, disabled, elders, those with brain injury or mental illness, but the plaints of loneliness, non-inclusion, and obvious marginalization fill social media pages and private conversations.

So what do we do?

Mary-Frances O’Connor wrote in The Grieving Body, “Prioritizing our peace of mind could be considered our highest value….When I recognize that I am feeling great distress or difficulty, and because I have the desire to comfort any person who feels down like this, I can enact this compassion for myself.”

People call us brain injury “survivors.” But surviving connotes scrabbling for a crumb lodged in a tiny crack that others may steal or shove deeper away from our struggling fingers, a crumb that fuels us only for a few minutes while we seek another crumb. Surviving keeps our sight focused on the next crumb. Loving ourself lifts our face up to see our own value.

Valuing myself, I set myself up for success.

If success meant napping after breakfast to recover spent energy, then I napped. Does it matter if others mock the idea of stirring milk into cereal and eating it as exhausting? Others may demand we do something.

But their demand subsumes our self-compassion.

Their incomprehension and need to see an active body oppresses our success to regain energy; their “something” slows down or regresses our healing and exacerbates loneliness. The predictable failure at doing the “something” with unrecovered energy spreads like a miasma into feeling we’re a failure.

It swipes our value from life.

Traumatic Brain Injury Essential Reads

The Impact of Head Injury on Brain Health

Traumatic Brain Injuries in the Modern Age

But how can we love ourself when brain injury eradicates affect and emotions vanish or blaze into momentary anger?

Love encompasses more than feelings.

Love drives thoughts.

Love acts.

The primary act of self-love is self-care.

At least one person in the world is with you: you.

And if your faith encompasses God, there's another who loves and cares for you.

Self-care runs the gamut from eating yummy, nutritious food to doing what we love (not others’ ideas for us) to showing up to the fatiguing, tedious neurostimulation treatments whose neurophysiological healing rewards with more energy and improved brain function.

O’Connor opines that sharing grief is not a burden but a kindness. “Others come to understand that a struggle is normal after loss, and over time, they see that this struggle changes as we restore our lives.”

Sharing our brain injury odyssey, powered by self-care not by others’ mistaken ideas, does the same.

If only friends and family would gather around us, enfold us in their lives, listen to us, and learn. Then they, too, could experience the reward when we reach our full potential the self-love way.

Copyright ©2022 and 2025 Shireen Anne Jeejeebhoy