Today on Brainline: The Weight of Loss After Brain Injury

Last week Brainline published my newest article. The loss is still raw, still fresh, still painful, but writing about my dad in this piece brought a small measure of comfort.

Acceptance has been slow to come.

"Dad, this one's for you..."

~David

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The Weight of Loss After Brain Injury

Time seems to pass faster every year. It feels like just yesterday that I first presented at a brain injury conference. It was 2013, and I was asked to offer the keynote address at the Brain Injury Association of Maine’s annual conference. No one was more surprised than me to receive the invitation.

It was my first time standing at a podium at a brain injury conference. And it wouldn’t be my last. Front and center, sat my mom and dad. Alongside them, my wife, Sarah. In the spirit of transparent disclosure, I was terrified, but not for the reasons you might think. My biggest fear was not public speaking, it was the heft of my responsibility as an up-and-coming advocate tasked with sharing my truths about life after a brain injury.

In my first book, Metamorphosis, Surviving Brain Injury, in the chapter appropriately titled, “I Lied,” I wrote openly about lying to those closest to me about how I was really doing. As I shared in my book, my intent was not to deceive. Rather, it was a desire not to worry those close to me. It was an act of protection — for all of us.

There I stood, wearing my best suit, my hands shaking, a tremble in my voice, speaking openly and with painful candor about the realities of life as a newly minted member of the brain injury community. I spoke of my new physical challenges, the vertigo that often stole my ability to walk a straight line. I spoke of my mental challenges, of people who had walked out of my life, of my loss of income and the financial hardships we suffered. And while Sarah knew all of it, it was news to my mom and dad.

An hour later, I was done, my life bared in front of those I was trying to protect. At the time, I was about two years out from my injury. The applause erupted and those in attendance all stood. I remember looking down at my mom and dad in the audience, who were certainly unsure of what to make of it all.

My relationship with my parents changed after that. There was a subtle, but perceptible shift. My mom would ask me how I was. But in her voice, they were not just words, not just a question people often ask without expecting anything other than “fine” or “great.” But my mother was asking how I really was. For the next five years, my parents were a huge part of my personal cheering squad. As I continued to present at conferences, they offered their love and support. My personality, like so many others, changed after my injury. They came to love and accept the new version of me.

Five years after that day in Maine, my mom sustained an acquired brain injury in the form of a stroke. A year later, she died. A couple of weeks ago, my dad joined my mom. He was 90. This past weekend, we held a memorial service for my dad. The loss is still painful, the grief raw. I reach for my phone to call him, only to realize that he’s gone. Then I do it again.

The brain fog and forgetfulness have been off the charts. But this time, I am not going to blame it on brain injury; I am experiencing grief just like any other human being.

I had the wonderful gift of being able to eulogize my dad at his service. Held in a small church in a very typical New England town, the pews were full. There were cherished friends, members of the local community, countless family members, children, grandchildren, and great-grandchildren.

But also — there to support Sarah and me — were other members of the brain injury community. These are kind, wonderful souls who would not have been part of our lives had it not been for my injury. How can I not be awash in gratitude?

I’m going to miss my dad so much. He was truly a one-of-a-kind person. But I am also grateful that he was there to see the person that I have become. Like he said the last time he saw me, he was proud of me.

And my final words to him, spoken just a day before he passed… “I love you, Dad.”

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