Waking up in the morning with a migraine, I automatically assumed it was from the one alcoholic drink I had the night before at a neuropsychology conference. However, as the day went on, I felt like my walking wasn’t coordinated and my vision just didn’t feel right, but I was in denial.
It wasn’t until the end of the day that I got concerned and realized I couldn’t see the presentation being projected on the screen. I don’t know why I didn’t go to the ER, but I didn’t. Instead, I saw my primary-care physician (whom I’ve been seeing for 30 years) the next day, and he explained that he suspected a possible stroke, multiple sclerosis, or myasthenia gravis. He told me to get an MRI right away.
I called to get an MRI, and the imaging place told me they could schedule me about 10 days out, but I knew I couldn’t wait that long. I’ve been in the medical field for about 20 years, so I used my contacts and got an appointment right away with Dr. Rucker, a neuro-ophthalmologist at NYU Langone, because I realized my blurred vision was actually double vision. She got me an MRI the same day I saw her.
My knowledge and experience as a cognitive neuroscientist did help, because the symptoms I was experiencing (double vision, poor balance, poor coordination) didn’t seem to me to be stroke symptoms.
Because of what I know about the vestibular system, I thought it had something to do with the peripheral vestibular nervous system, which affects vertigo and eye control—exactly what I was experiencing. I just wasn’t expecting the cause or the location of the damage.
Most causes of vertigo are temporary, affecting the vestibular apparatus, which is why I wasn’t too concerned at first. After I met with Rucker initially, it seemed to be a peripheral nervous system condition, Miller Fisher syndrome, based on a preliminary blood test. So, I accepted it, and we agreed that it would be a “working label” for what I was experiencing until more tests came back.
Rucker continued investigating, as the diagnosis remained unclear despite normal blood tests, MRIs, and an initial spinal tap. A second tap showed high protein levels in the cerebrospinal fluid, raising the possibility of Miller-Fisher syndrome. A sample was sent to the Mayo Clinic, where standard cancer biomarkers were negative, but an experimental one was abnormal. This led to further testing—including a CT scan, biopsy, and PET scan—which confirmed lymphoma as the immune-driven cause of the neurological symptoms.
On return from my 25-year wedding anniversary trip to Ambergris Caye, Belize, I was diagnosed with two types of non-Hodgkin lymphoma at the same time: a slow-growing cancer where abnormal B cells form clusters in the lymph nodes called Follicular lymphoma and diffuse large B-cell lymphoma (DLBCL). This is fast-growing, with larger abnormal B cells that spread more diffusely and require urgent treatment.
Around four weeks later, on July 31, 2019, I started treatment. Because my lymphoma might have spread to my brain, since I had some nerve-related symptoms, I needed special treatment.
First, I received a chemotherapy drug called methotrexate, injected directly into my spinal fluid through a procedure called a spinal tap. I had this done four times to make sure the medicine could reach my brain and spinal cord.
At the same time, I also had a strong chemotherapy treatment called R-CHOP, which is a mix of five different medicines. These medicines work together to kill cancer cells and help stop them from spreading. I received R-CHOP through an IV drip every three weeks and had six rounds in total.
For the double vision, I saw two occupational therapists who specialize in vision therapy. Vision therapy involves exercises and activities that improve the movement of the eyes.
I believe my expertise in neuroplasticity helped my vision and balance recovery, by seeking occupational and physical therapists to help treat the double vision and poor balance. The therapists provided exercises, which I viewed as building and strengthening neural pathways. I believe that doing those exercises with the therapists and on my own helped improve my eyes and balance.
I went into remission in December 2019 and started rituximab treatments in January 2020 to prevent the cancer from returning. When COVID-19 hit, I paused treatments after four sessions to rebuild my immune system and get vaccinated. I restarted the cancer drug nine months later and completed it by August 2022. To celebrate, I got scuba-certified and dove in the Red Sea in January 2023.
Almost a year later, I had a scare with daily migraines and worsening double vision, but tests showed no new cancer. Instead, it was paraneoplastic cerebellar syndrome, where antibodies attacked my brain. This led Rucker to publish the findings in the journal The Cerebellum that lymphoma led to disruption of the cerebellum causing double vision.
My own research has grown by understanding, connecting with, and having greater appreciation for the people who participate in my research studies and the students who assist me. Even though people with brain injuries join my research at least a year after their injury, I understand, now more than ever, how sudden changes impact their lives and their families.
I remember 2019, when I had time to get a will and put my affairs in order for my wife if I died. People with traumatic injuries often don’t get that opportunity. I recognize more than ever that each individual has a strength—whether it’s humor, storytelling, organizational skills, or a strong memory—and they can use these strengths to survive and persevere. They want family and friends’ support. They want to contribute to society through work or volunteering. They want to feel needed and not outcast.
I feel it is more crucial than ever that I help identify ways to improve cognitive recovery in people living with chronic cognitive deficits from TBI [traumatic brain injury], which is my area of expertise. But my legacy will be defined by the impact I have on the people I train, the people I love in my life, and the kindness I share.
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