But My Brain had Other Ideas
by Deb Brandon
Audio excerpt at the end of the page, following text excerpt
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.