With little help from doctors, I mapped my recovery from brain surgery

I stood in the open doorway to my house, swaying slightly, hesitant to enter what had become uncharted territory. It was my first day back home from having brain surgeries. Two had been planned to remove cavernous angiomas, tangles of fragile blood vessels in my brain that had bled. The third was a surprise, needed when I sprang a leak of cerebral spinal fluid.

I’d been diagnosed after months of worsening symptoms, including problems with balance and vertigo, weird changes in hearing, losing and regaining my sense of taste, and strange seizure-like episodes during which my eyes closed and my body became unresponsive but I was fully conscious, aware of what was happening around me. The symptoms were tracked to brain bleeds.

My doctors initially recommended a wait-and-see approach. They thought the odds of more bleeds were remote, despite the fact that cavernous angiomas were scattered throughout my brain. When my “bloody brain” proved them wrong — two of the larger angiomas bled — my symptoms escalated and my quality of life plummeted. I opted for brain surgery.

Surgery, then recovery, then I’d get my old life back; that’s the road I thought I was on.

I’d spent a week doing rehabilitation at the hospital’s rehab center between my second and third surgeries. While there, my physical therapist told me to continue working on my gait when I went home. My occupational therapist reminded me to contact a neuropsychologist and a neuro-ophthalmologist. My hospital discharge instructions included a note to arrange a follow-up appointment with my neurologist.

And now I was home, standing alone in the doorway. There was no map for this recovery, no compass to point the way. I had no advocate, no guide to ensure that I received necessary treatments.

How was I supposed to find my way? How was I supposed to heal? Would I ever be able to return to my work as a college math professor? Could I be a good mom again? Or would I be lost, a perpetual victim to my symptoms, forever struggling with dizziness, balance, short-term memory, sensory overload, emotional meltdowns — and even with thinking itself?

I’m not sure how I figured out to go to my family doctor to remove my stitches, or what triggered the realization that I needed the help of a psychotherapist for the depression that was descending on me.

Most of my doctors weren’t as helpful as I had hoped they’d be. I asked my neurologist for guidance, but other than giving me names for good neuropsychologists and neuro-ophthalmologists, he had nothing to offer. When I asked him about outpatient rehab, he told me I had enough on my plate. I didn’t have the wherewithal to revisit the subject at later appointments, and he never brought the subject up again.

No one told me about vision therapy to strengthen the muscles in my left eye, or speech therapy to help with my difficulties enunciating.

My neuropsychologist tried to steer me in the right direction with the recommendation that I play video games, such as Brain Age and Lumosity, to improve my cognitive function. He also suggested compensation techniques such as using a GPS so I wouldn’t have to follow complex directions, and finding a better way to organize and keep reminders, like taking copious notes in a memory pad or a voice recorder, instead of relying on the sticky notes that coated every available surface of my home. When he learned of my difficulties processing high volumes of sensory input — for example, when the noise and chaos in a crowded restaurant overwhelmed me to the point where my brain shut down until it could catch up with all the data pouring in — he said to avoid problematic situations and use earplugs when I couldn’t.

How to implement these accommodations was left totally up to me, and I, a patient with no professional training in medicine, was in charge.

For the most part, I created my own map. I bumbled along, making mistakes, but none that caused long-lasting damage. My stubbornness served me well.

I set up a daily rehab regime and I pushed myself, hard. Each day I made at least 10 attempts to conquer the Simon game and played at least three video games. I worked to regain my mathematical skills, struggling through examples and problems in a college algebra textbook and then in the calculus book I had used when teaching at Carnegie Mellon University.

It was determination, plus help and advice from friends and family, that really got me through. And the dragon boat.

Before the bleeds, I had been an avid dragon boater with the Steel City Dragons. I met with teammates on a regular basis to practice. My team traveled throughout our region and occasionally farther afield to compete. I’d always felt a fierce joy in paddling. I’d already missed one season; I wasn’t going to let my health woes get in the way of another one.

To prepare for the upcoming season, I exercised every morning, alternating days on a stationary bike and a rowing machine. By late spring, I was able to join my teammates at our annual kickoff event, dragon boat camp. I wasn’t back to my old self (I was only beginning to understand that I never would be), but I was back to dragon boating and paddling with that same fierce joy. During festivals and races, a friend stayed by my side to help me escape situations that overloaded my circuitry with sensory data. With her guidance, I learned another important lesson: to ask for help, first from friends, then strangers, and finally from my teenaged children.

Having been extremely independent before my brain bleeds and surgeries, I knew little of asking for help. But now, I had no choice; I couldn’t manage on my own.

So I mentioned to a friend that I had trouble choosing which bills to use to pay for groceries. She suggested that I use a credit card. When I admitted I couldn’t read the way I used to, she pressed me to buy an e-reader to recover my status as a bookworm. Both solutions worked like a charm.

After arriving home from the hospital, I felt very much alone in my struggles. But as I began to heal, my community grew around me, providing me with much needed emotional support and teaching me another important lesson: I was not alone.

I’m still surprised by how little guidance I got from my doctors about what to expect while recovering from a traumatic medical event and three brain surgeries, and how to structure that recovery. Fortunately, I discovered my true North Star — a combination of my stubbornness and perseverance and my caring community.

A lot of my life’s territory remains uncharted. Always “there be dragons” and always there will be friends to help. We each create our maps as we travel the landscapes of our daily world, changing, adjusting, adapting with each step, with each discovery. That’s hard, but not hopeless.

Deb Brandon, Ph.D., is a mother, dragon boater, professor in the Department of Mathematical Sciences at Carnegie Mellon University, and author of “But My Brain Had Other Ideas: A Memoir of Recovery from Brain Injury” (She Writes Press, October 2017).