Transforming Fear Into Hope

Today is my second birthday. Not really, but sort of.  

Two years ago, I had brain surgery. I have epilepsy. Things were not looking good.  

My neurologist, at the time, invited me to meet with him. “I have difficult news,” he said, “Your current situation is incompatible with sustaining life.”  

He paused, and I paused, attempting to wrap my mind around his words.

“Do you mean that I am going to die?”

“Given the number of seizures you are having, the severity, the increasing frequency of the seizures . . . you are statistically at high odds of experiencing SUDEP (Sudden Unexpected Death in Epilepsy Syndrome).”

“Which means?”  

“That it is becoming increasingly likely that you will have a seizure so severe that you will die. I recommend that you consider brain surgery. We can have some tests done to see if you are candidate.”

In retrospect, it was all rather casual, as if I might be a candidate for the best smile in the school year book.  

“So, Dr. . . , you are telling me that my choices are either dying or having brain surgery?”

“Yes. If you are fortunate, you might simply continue to have seizures once a month.”

I walked out of his office and went looking for a new neurologist. I was a Nia and yoga teacher, I had a strong body, a lively mind and a determined spirit. I was a minister, a mom, a community leader. The diagnosis was inconvenient and, in my mind, incompatible for sustaining my practice of dancing through life.  

The seizures got worse. I found a new neurologist and received opinions and second opinions about brain surgery. The scans and tests of my brain indicated my seizures were originating in my left temporal lobe which is responsible for, among other things, language, memory and relationship with numbers. They could see from my scans that I had some kind of lesion, but the nature of it was unclear.  

As a person considered to be highly functional, the medical team I finally selected, decided to do a new type of epilepsy surgery. Rather than removing all of the seizure active areas in my brain, referred to as a whole lot of real estate, the brain surgeon worked closely with the neurologist and the scanning team to take out a minimal amount of my brain, and to enter this deep center of the brain as minimally invasive as they were able to devise.

Surgery for Temporal Lobe Epilepsy generally leaves the patient with limited memory, compromises speech and overall intellect. My amazing team of doctors left me with a brain, when tested after surgery, worked well enough that I did not qualify for any form of rehabilitation.  My brain may have been beyond minimum standards, but I could not count consistently, I did not understand dates, and I could not read a clock. My speech was slow and limited. I lived in a sort of timeless now moment, which sounds beautiful, but is also very difficult as a lifestyle when living in community!  

I had no idea what to do to rehab my new designer brain. No one had ever had a surgery exactly like mine and no one else had much of an idea of how I could rehab my brain either. I decided I would use the tool I knew best, which had helped me through a difficult time in life prior to the surgery – Nia. In the Neurological Ward of the Massachusetts General Hospital, I started tapping beat and count on my hospital bed. I asked for a pen and started drawing bars, which helped me learn to count to 8. Once I could use my 4 color pen, I attempted to focus enough, using RAW, to think about how to click the pen and create 4 colors of bars. I danced my fingers to music so that I could start over again, beginning in what felt like embryonic, working toward creeping, crawling and perhaps even standing and walking.

Acknowledging my embryonic state, owning it as I tapped beat and count, as I drew crazy bars and giggled at fractions (I’ve always been challenged by fractions), I recognized something. I was laughing. I was sensing joy. As I felt more deeply, moving through non-acceptance and disbelief into joy, I recognized joy was threaded with new hope. Hope that, beyond the fear and all that I could not do, there was that which Nia had already taught me how to do . . . dance through life.

This is the 2nd blog of Kristine's Brain Journey. Click here to read the 1st!

Kristine Zakarison is a Nia Black Belt, a certified yoga instructor, as well as an ordained minister. She is the mother of two children, wife, and the owner of Aloft Studios in Pullman, WA. She shares her thoughts and practice at and After living in Boston for many years, she returned back to eastern Washington, where her family still has a farm. She loves living close to the soil as she dances through life.