The Doctor and the Scarecrow
By John Britton, MD
My head was planted in spilled milk, cereal and vomitus on a table in the Fairfax Hospital physician’s dining room. I had fainted without any warning, no dizziness or nausea or other prodroma.
I woke up almost as quickly as I had fainted. I had a wheelchair under me driven by Sam Lee, one of my anesthesia partners, at formula1 speed to the emergency room.
In the ER I was perfectly oriented. I had no fever and told the doc that I was feeling perfectly fine before I fainted. The EKG was normal. I was discharged and drove myself home.
I would never come to work as a pediatric anesthesiologist ever again.
I was anxious to get home because I had to pack for a trip to Vermont to take my mother to see her oncologist at Dartmouth. The next day I flew from Bethesda, MD to Manchester, NH, got a rental car and started driving to little Barnard, VT. I was energized to get going. My mother was scared. Her mouth cancer had recurred after three major surgeries.
I felt fine on the flight, but along the drive I started to get dizzy. I got off I-89 and drove through Sutton, NH. I weaved my way through town and finally found a secluded strip mall to take a nap. I thought I was just tired, which was kind of normal as I had long workdays and nights on call.
A young cop rapped on my window. “We got a call that you were swerving all over the road.” The breathalyzer was negative, and I could walk in a straight line. His supervisor swore that I was on narcotics but the blood test at the New London hospital was negative. The cop took my last $20 from my wallet for “bail”.
My rental car was taken. I got on a dark bus to White River, VT. Erin, one of my colleagues, said that I called her from the bus and told her that the cops had taken my car. I have no recollection of the call.
The next morning a volunteer from the community drove my mother and me to Dartmouth for her oncology appointment. I wandered around the waiting area and atrium of the hospital in a fog.
The next day I started to hallucinate at my mother’s house. The ambulance took me to Gifford Hospital in Randolph. The CT scan showed a whiteout of my right brain, and the spinal fluid was full of lymphocytes. I had a virus in my brain.
In the ICU at Dartmouth Medical Center, I started to seize and breathe in kind of a death spiral way. My family was told that I may not survive and if I did my brain was badly impaired, anyone’s guess how I would function.
I don’t remember how I found out that I had a Herpes Simplex 1 encephalitis, a rare infection. I was given IV acyclovir and anti-seizure meds. I had a curious clinical response: interesting case, no emotion. I grew up in Vermont in a family where feelings were stuffed. To add to this was my medical training: dispassion to step away from emotions.
To be closer to home in Bethesda, MD, I was transferred to Johns Hopkins in Baltimore. This was the beginning of a long brain rehabilitation, fraught with cognitive function and memory loss. I had a psychopomp experience (a Greek word for a figure that beckons you to a different world), a vision of a jester beckoning me to another world, death. I could not recognize faces, had difficulty walking and my short-term memory was gone.
My transport orderly decorated my new cane for trips down the hallway. I had daily visits from colleagues who dealt with metro Washington to come see me. My neurology floor nurse sat with me most dinner times. All these people were so compassionate.
Before returning home, I stayed at The Hebrew Home of Greater Washington nursing facility for a month. Most nights there was noise everywhere. At 61, I was the youngest patient by far, people walking around in a daze being ordered around by foreign speaking nurses.
I became part of the Brain Recovery program at the National Rehabilitation Hospital in downtown DC. Patrick from a medical taxi service drove me there daily for three months. I was with a group of 10 people who were scarecrows looking for a brain.
I realized how lucky I was to have a stable family and finances. The despair of my fellow patients was so sad, some with no family, some with no money, some with difficulty communicating, some with severe mobility issues and some with a combination of difficulties.
The milestones for recovery from a right-brain injury are different than a left-brain injury. The left is where speech and memory originate. The improvements in left function can easily be checked off. The right has less defined functions. Classically it is the creative hemisphere. As my neurologist told me: we really don’t know much about the right brain because all the research money goes to left brain discovery. The former director of the brain bank at the National Institutes of Health, someone who has cataloged thousands of human brains, told me that he had never seen or heard about a patient who had had a Herpes encephalitis that manifested as a right brain injury.
Half of my right brain was gone, and doctors were baffled. I was a unicorn, a scarecrow without a brain. I was on my own.
I became obsessed with neuroscience, specifically the difference between the left and right brain. I read thousands of pages regarding brain anatomy and function, neuropsychology and religion. I learned that our brain has two hemispheres that function differently even though there is connection between the two. We are born with 80 billion neurons (brain cells) that cannot regenerate. The work around is the 20 trillion connections (circuits) that can be “rewired” to compensate for destroyed neurons.
My right limbic area deep in the interior was destroyed, a rare area to be injured. The limbic area regulates emotion, does facial recognition, initiates artistic endeavors, appreciates music and is where humor is initiated. I asked some of the world’s experts in neurology about a program to compensate for my right brain injury. They had no answer. They had no experience with my type of injury.
After Hopkins and the nursing home I was alone at home most days. My wife who had a busy surgical practice was gone every day. I had no job and no purpose. My left brain kept asking: why aren't you working, why can't you focus, and why aren't you accomplishing more? I lost my driver’s license. I got to practice French with my West African Uber drivers. I had to constantly keep track of disability applications, medications and appointments. I was mentally fatigued because the virus had caused a profound inflammation in my brain. How was I going to get through the day?
My speech therapist told me that right brain injuries are more difficult to rehabilitate because the left takes over with all of its anxious delusions. When the left brain becomes the master, thoughts are not reality tested by the right brain. There is catastrophic thinking, unregulated, which stokes the fire of anxiety. My days were filled with phone calls and filling out forms, disability insurance, health insurance and Uber. The anxiety was overwhelming. I sometimes would kneel and rest my head on the floor to release the tension in my eyes. The word “should” was used all the time by well-meaning people: you should do this, read this, call this person or watch this program. I hate the word should.
I had never felt so helpless.
The anti-seizure medication, Keppra, made my depression worse. It took months to find an alternative medication, lamotrigine. With antidepressant medication and the meditation method Body Centered Inquiry (Focusing), developed at the University of Chicago and taught by renowned instructor Jonathan Foust, you can explore your body's felt sense to better understand your experiences. The instructor offers prompts to look at what and where you are having a certain feeling. It evoked vivid imagery of tranquil and aesthetically pleasing locations. I had peace that I had not experienced in years. I felt that my right brain was now awake. Deep meditation studies using functional MRIs explained this. My mind became clearer. I could sleep. My anxiety and depression lifted.
Despite these improvements, I can no longer practice medicine because of a profound brain fog that is only partially propped up with Ritalin and Modafinil, potent brain stimulants. I have a new life, one that I never would have ever imagined, with communities of people I had never known before. The journey has taken me to incredible places of suffering and joy. I now feel whole, a place of equanimity, a place of wisdom and love.
I am no longer a scarecrow on the Yellow Brick Road. I am mindfully present wherever I am.
About the Author
John Britton, MD is 71 years old and grew up in Vermont. He has two children and two grandchildren. John went to the University of Vermont Medical School, eventually becoming a pediatric anesthesiologist which he practiced for 30 years. He currently lives in Bethesda, MD.