Welcome back to The Head and the Heart blog series. In my previous post, I wrote about the events leading up to the diagnosis of a benign tumor in the prefrontal lobe of my brain, and the resulting craniotomy in 2015. In this next installment, I’ll discuss the specifics of the damage and my initial experiences post-surgery when I begin to realize that the brain is a lot more complicated than I ever suspected.
Return to the Waking World
It was dark, probably very early in the morning. There were tubes in various parts of me, so I lay perfectly still to avoid further discomfort. I was painfully awake, so I occupied the first moments of consciousness by doing a quick mental assessment, making sure the important bits of my mind were still there: C major scale on bass (check!), date and current president (April 8, 2015, Obama, check!) and a brief skirmish into event-planning territory, mostly involving what I’d order for breakfast. Upon completing my diagnostics, I wondered if there were any perceptible changes in my personality – if I was still me. I honestly couldn’t tell, which seemed like a good thing.
I called my husband once I wrangled the phone from the side of the bed. His shock at hearing my voice so soon after surgery was priceless. I told him to come soon as Dr. Gilmer was making her rounds and I didn’t completely trust myself to understand everything she was going to say. Despite my preparations, however, she arrived shortly after I hung up with him.
I gave her a cheery “Good morning!” and her response was “Hooray! I kept your personality!” She said it jokingly, but I’ve since learned that the prefrontal lobe is where everything about a person is organized: emotions, impulses, behavior, etc., so her relief was understandable. I asked her some recovery-related questions and was sorry to hear I had to end my training for a half-marathon I was planning on running that November. All my other activities could be returned to within reasonable times.
Cognitive Functions Assessed
The day was spent mostly sleeping, visiting with close family, and getting appointments set up for aftercare. My cognitive skills were tested and I only had minor issues with memory. However, I still had trouble speaking. This was due to my slightly crushed Broca’s area, which is where thoughts become words and are put together to make a sentence. So while I could clearly conceptualize what I wanted to say, I was unable to say it out loud as the trajectory of my sentence became flimsy, its conclusion dissipating into foggy disorder. It was like trying to carry boxes while picking up more boxes on the floor, and dropping some while you’re doing that. You can imagine how frustrated I got trying to describe our Apprenticeship Program to my twin brother, then giving up after several maddening attempts.
This condition is called aphasia, a collective term to describe communication disorders resulting from brain trauma.
I was released two days later. The world outside was overwhelming, though I had only been in the hospital five days. There were new sounds and smells and unending sky. I kept my head down or my eyes closed, trying not to watch passing scenery. Once home, I carefully got out of the car and walked slowly into my house for the first time as a brain surgery survivor. I promptly crawled into bed and slept.
Reign of the Right Hippie Brain
The next morning, I had the oddest sensation that everything in my house felt crooked, and that I could “feel” all the objects in the room. I marveled at my new powers of perception, and wondered if this is what the mind of a superhero ninja was always like. Or perhaps it was a similar experience to that of Dr. Jill Bolte Taylor, neuroscientist, and author of “My Stroke of Insight,” the story of how she suffered a severe stroke at the age of 37. As she describes the morning of the stroke, she was able to observe that as her left hemisphere was hemorrhaging, her right hemisphere was slowly taking over and putting her in a state of euphoria and peace.
This helped explain my world that first week. The present was quite agreeable and I felt generally fantastic about the future and just about everything. My hippie right brain, filled with pure experience and no concept of time whatsoever, took control while my left brain took a well-deserved break. Reason and order were on temporary leave, and years of mental and emotional baggage were swept away. I had never felt so clear-headed and focused, and I secretly hoped that nothing would ever change.
Here is her TED talk as she relates the morning of the stroke.
I hadn’t looked at my head yet. Fearing the worst, I went to the bathroom mirror, removed the beanie my mother had knit for me and angled my head forward to get a full view. The six-inch raised scar started above my left ear, crossed the top of my head and ended above my right eye. There was about a ½ inch of perfectly shaved skin on either side and, to my numb horror, it gently pulsed with returning fluids. I quietly took a moment to once again understand what had happened to me, and felt the sting of approaching tears.
A Slow Re-entry
I was told no internet, no texting, and no watching TV. Visitors should be one person at a time and I also wasn’t allowed to read. If I watched television it could only be mentally unchallenging programs like “Judge Judy” or “American Idol.” My brain needed every opportunity to heal, and so watching the new season of “Game of Thrones” was probably unlikely.
I had hours to occupy myself. I decided to use the time to journal my experiences, since I wasn’t restricted from writing. I quickly filled pages with observations and notes:
April 12, 2015
Vague familiarity with house but not quite all there. Floor feels unlevel – didn’t notice before. When lying in bed, feel upside down. Slightly swollen above left eye but told that was normal. Mind seems quicker at times than before. Experienced brain tissue section flexing on left side of head earlier in bathroom in conjunction with a physical activity – freaky!
April 14, 2015
Woke up to ringing in left ear, like a thousand chandelier crystals being shaken. Cannot smell bacon or coffee from far away. Probably means areas of brain exist that are in charge of locating smells. Can’t taste sour or salty, but sweet is okay. Watched TV for first time and found myself over-analyzing Scooby Doo storyline. “Adventure Time” was recommended by two friends but found it super psychedelic and overwhelming to watch – too much movement and color, but strangely I could follow the stream-of-consciousness-inspired plot.
I was beginning to learn how complicated the brain is, and how delicate. Any damage to this panna cotta-like organ could result in an incomplete perception of reality and conscious experience.
We kept the house pretty quiet. My husband couldn’t watch television unless I was asleep. I could hear it even with the sound turned down and it made me anxious and irritable. CD recordings of ocean waves and rain calmed my mind, but I couldn’t tolerate any music yet, especially with lyrics. I wasn’t yet ready to emerge into the world, but I would eventually have to interact with people, drive, return to being Mission Control at Detroit Labs, and hopefully start playing music again. But for the moment I was content to eat, nap twice a day, write, and accept various visitors who wanted to see for themselves that I had survived my ordeal.
Next week, I’ll talk about how I learned to cope with the physical and emotional aspects of my injuries and how I methodically overcame my deficits with grace and humility, and a little outside help.