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But My Brain had Other Ideas

I woke up in a huge, well lit parking garage; the lights were too bright, too harsh. Beside every bed was a cement pillar sporting a number. Each patient bristled with tubes and wires, surrounded by alien machines and contraptions, blinking lights, tubes going in, tubes coming out, flashing screens. Nurses and doctors bustled around doing inexplicable things.

I was petrified, tears streaming down my cheeks.

The recovery room nurses kept checking on me. “Are you all right? What’s wrong?”

I couldn't answer.

I had no frame of reference, nothing to give me direction.

****

I have cavernous angiomas, clusters of malformed blood vessels in my brain. Two of them had bled, wreaking havoc on my brain and my life.

Seizures, excruciating headaches, loss of balance, and more seizures. I was rushed into the ER almost weekly. My life became MRIs, CT scans, EEGs, medical appointments, rehab. My entire existence revolved around the bloody brain.

Surviving from day to day drained my resources. I had nothing left to give to my kids. My marriage was a shambles. I alternated between numbing fear and utter despair.

This was no kind of life. The doctors' wait-and-see strategy was not acceptable. There had to be a better solution out there. I crawled out of hiding and searched for answers—and discovered that the only effective treatment for cavernous angiomas was surgery.

Brain surgery versus living a nightmare.

Removing the two bleeders sent me down a path to reclaim my life, a path I wish on no one, yet do not regret.

A few hours after the first surgery, I experienced a grand mal seizure. Saliva still oozing down my chin, my one concern was whether the second surgery was still a go.

A day later, they drilled a second hole into my skull.

I woke from the second surgery in a world of pain, chaos, and confusion.

I was incapable of processing input from my surroundings. I felt as if I didn't fit inside my body. Indescribable headaches erupted without warning and became my universe, my eternity. My speech was slurred, my vision blurry, my hearing muffled. I had double vision. I suffered from severe vertigo and had terrible balance. I couldn't walk. I couldn’t read.

But by the end of a week in inpatient rehab, I was walking—as my grand finale with my physical therapist, I danced the grapevine, though my therapist had to catch me when I came to a lurching stop. I worked on my damaged navigational skills and my vision. I relearned to read.

I was ready: to reclaim my role as a mother, to regain my place at work and in the world. I knew: it was time to go home.

But my brain had other ideas.

Cover image for "But My Brain Had Other Ideas"

ISBN-13: 9781631522468
paperback | 220 pages

audiobook ASIN: B07LCVHVZ4

ebook ASIN: B074118HTX

Also available as an audiobook

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Listen to a sample from the audiobook

Read by Helen Lloyd

Voice Arts Awards Nominee seal

SOVAS Nominee Helen Lloyd, Voice Arts Awards, Audiobook Narration – Biography, Best Voiceover, 2019

More of what people are saying about But My Brain Had Other Ideas:

Told in poetic and exacting language, Brandon's intimate account of life with a damaged brain is equal parts hypnotizing, harrowing, and inspiring.

Disability does not discriminate, it can be joined in the blink of an eye or in this case a rupture in the brain. But My Brain Had Other Ideas is a mind boggling roller coaster reality ride of personal trauma, disability and society’s mind numbing response.

Deb Brandon documents her journey with cerebral cavernous angioma, a disease of brain blood vessels, with ferocious honesty. Her tale offers a glimpse into an often confusing and frightening world in which reality can be upended from one day to the next, a world that requires reaching down to the depths of resilience to stay afloat. Deb's struggles and triumphs will resonate with anyone who suffers from invisible illness and those who love them.

Deb Brandon is analytical, precise, and detail oriented. But her prose reveals "another side of her brain": authentic, poetic, and romantic. I was singularly captured by Deb's storytelling. Beyond my perspective as a surgeon and expert on cavernous angiomas, I could not resist hiking along with her in the wilderness, watching Deb draw from nature the strength to adjust, and readjust. As a professor, I wanted to be with her, as she balanced her challenges with the desire to teach and continue to contribute at the highest level. But My Brain Had Other Ideas is a lively portrait of the personal toll of brain disease.