On October 6, 2018, I stepped out the front door of my Red Hook, Brooklyn apartment on my way to a local movie theater. I turned my head to look at my mailbox and suddenly felt the world spinning out of control. I lost the use of my arms and legs as I spun in a dizzy circle. Luckily, two neighbors rushed to my aid and caught me, preventing me from hitting the sidewalk.
I went back inside shaken and alarmed. I hadn’t been feeling like myself for about a year, experiencing more migraines than usual, odd sensations of imbalance, pressure in my ear, and recently suffering unusual fatigue—”peakedness” as my mother used to call it. But this was something else.
My doctor had been unable to find anything wrong but now ordered an MRI at week’s end. After what seemed like a long time in the tube resonating with loud clicking noises, I waited for the results in the waiting room. Over the phone the technician told me that the scan revealed a brain tumor. I later learned that an “ependymoma” had wrapped itself around my brain stem. I needed to go the hospital immediately and an ambulance had been called. On my way to New York Presbyterian Hospital I called my partner Steven and my sister Moira. “It seems I have a brain tumor,” I said. “Can you let our family know?.”
The 8-hour surgery took place on October 16 under the experienced hands of neurosurgeon Dr. Theodore Schwartz, an expert in this relatively rare tumor. “We got 99% of it,” Dr. Schwartz told me in the recovery room. I was relieved. But my road to recovery was just beginning.
In the days and weeks after surgery, I was unable to walk, see properly, read or type an email, or eat. I suffered bizarre visual hallucinations and slept more than I was awake. The tumor was gone but the surgery had done a number on the rest of my brain.
After two weeks in the neuro-intensive care unit of New York Presbyterian, my brother Philip who is the CEO of the Kessler Rehabilitation Hospital in Saddle Brook, NJ. arranged for my transfer to his hospital. Ahead lay weeks of “rehab” at Kessler followed by a 6 week course of proton beam radiation therapy, and a year of rehab at the Rusk Institute in Manhattan.
Lying in my bed at Kessler one night I realized that I still had my voice. I clicked “voice memos” on my phone and began to speak. I recorded the “audio postcards” as a way of communicating with friends and family and thanking them for their support. Over two and half years they became a real-time record of my thoughts and emotions on the journey to recovery.
Last winter, almost one year into the Covid-19 pandemic, I started looking in the mirror and drawing what I felt and saw. The self-portraits complement the audio postcards. Now, having just gone back to Rusk to continue work on residual neurological dizziness, the work of recovery seems to stretch into the future.
The title comes from this poem by Emily Dickinson, written out in long
hand by my father, after he suffered a massive stroke at age 53. He copied this at some point in his 18 years of courageous adaptation to paralysis and brain damage.
The Brain, within its Groove
Runs evenly—and true—
But let a Splinter swerve—
‘Twere easier for You—
To put the water back—
When Floods have slit the Hills—
* he changed Dickinson”s “a Current” to “the water”