SATURDAY STORY - DECEMBER 11, 2023 - EPILESPY STORY

 SATURDAY, NOVEMBER 11, 2023 - STORY

On Saturdays, I write fiction. It isn’t perfect - but I like trying.  

*****

All of a sudden, our conversation ended. Danni stared at me - but wasn’t seeing me. Her eyelids were going up and down - not like winking. 

I had known Danni for two months. She is a beautiful, wonderful woman. When I first met her, she told me about her epilepsy. I knew nothing about this disease.

In about two minutes, she was back - dazed and confused.

She apologized to me (like she did every time she had such an epilepsy fit). She said, “I’m sorry, Steve, I lost it again.”

*****

I’m thirty-five and a computer analyst and programmer at Skyward Aviation. I didn’t date much in high school and college. I’m friendly enough and get along with people. I just couldn’t find the “right girl” for me. I didn’t want just any girl, but someone who would be my lifelong partner, somebody I could love. I also wanted a Jewish girl to fit my Jewish faith. 

I grabbed Danni’s hand and squeezed it. She looked at me with those bright blue eyes. Yes, I was hooked. I didn’t care about the fits and problems; we would make it. My heart skipped a beat as we just sat there - growing in our love and acceptance of each other.

In some respects, I’m not sure who was the more usual - the sweet girl next to me, who had epilepsy - or the introverted computer nerd who spent his evenings writing computer games and who hadn’t dated much.  

Danni didn’t drive. There was a slight chance that she could have a fit while driving and blackout and have an accident. It was great that our North Haven, Connecticut, community had great Uber drivers. She Ubered to her job as an accountant for Yale-New Haven Health Services in New Haven. Like me, she had waited for “Mr. Right” to come into her life. She had gone to college at The University of Connecticut and was from a tight Jewish family in Hartford, Connecticut.  

I met her at the JCC, the Jewish Community Center in New Haven. We have different Jewish backgrounds. My family attended Temple Beth Sholom in Hamden, a conservative community, and she attended Congregation Mishkan Israel, a reformed community in Hamden.  

If anything, our different Jewish backgrounds were more problematic to reconcile than the fact that Danni had epilepsy and I was a hopeful computer nerd.  

*****

Danni had medications that helped. She was to evaluate every time she had a seizure - the duration, severity, and what parts of the body were impacted. (On nights and weekends, I was the scribe for Danni’s seizures).  

Fortunately, there weren’t many seizures - maybe one or two a week and generally not very severe.  

*****

Four years later:

We did marry, and we have an adorable two-year-old daughter, Sydney. 

Sydney seems to be an ordinary child, but we are closely monitoring the situation as it concerns epilepsy. Danni made it through the pregnancy with very few seizures and then only mild.

*****

But, last week, Danni was helping Sydney in the bathtub and had a seizure that lasted about three minutes. I was in our small office writing my computer applications. The bathroom is down the hall from the office. I absentmindedly heard Sydney splashing and playing with her bath toys. Danni was singing nursery rhymes to Sydney, and then the singing stopped. Sydney started yelling, and I rushed into the bathroom. Danni was on the floor, unconscious. Sydney sensed something was wrong - like why was Mommy on the floor and not singing or playing with me?  

I first helped Sydney out of the tub and put on her Big Bird towel (her favorite). I told her to play with her toys. I pulled Danni into a seated position with her back on the bathroom wall. It was ten minutes until she came too. I sat next to her, holding her hand and saying encouraging things to her.  

Her eyes opened, and she was disoriented. Then she was wide awake and yelled, “WHERE IS SYDNEY?” 

I calmed her down. “Sydney is fine. She’s playing with her toys. Now, let’s get you to the sofa and relax.”

Getting Danni off the floor and to our sofa took some coaxing. Then I brought some of Sydney’s toys and Sydney to the living room to play near Danni. I made Danni a herbal tea and got her a few sugar-free, gluten-free cookies (her favorite).    

Sydney went to Danni and hugged her Mom, knowing Mommy needed some love.

*****

A year ago.

Danni’s seizures had generally been mild but with a few severe epilepsy fits. 

One afternoon at the Yale-New Haven Hospital administrative office, a visitor came to her office as Danni was auditing medicare claims.

“Danni Greenburg? Hi, I’m Dr. Richard Schwarz. Can I talk to you?”

Danni was suspicious. Had she screwed up on some difficulty insurance issue?

Dr. Schwarz sat next to her and smiled. “Danni, I’m not here to talk about insurance, accounting, or auditing - so just relax.”

Dannie managed a smile. “Okay, Dr. Schwarz, what do you want to discuss?”

Dr. Schwarz started, “You know we do all kinds of research here at Yale-New Haven. Not to brag, but I’ve been nominated for the Nobel Prize in Medicine twice.” He stopped, smiled, and laughed, “And didn’t get it either time.”

 

“My research is in neurosurgery, microsurgery, minimum invasive surgery. We interact with researchers around the globe. One of my focal areas is epilepsy. We have research subjects from around the country that come here - or to our fellow researchers at the Cleveland Clinic. A week ago, somebody mentioned that one of our top accountants had epilepsy - meaning you. Would you like to be part of a research program that could elevate your epilepsy?”

Danni didn’t quite know what to say. “But, Dr. Schwarz, I’m a mother of two children, Sydney, four years old, and Nathan, six months old. I’m unsure how this would be for me and my family.”

Dr. Schwarz answered, “You would still be on the payroll as a research subject. Maybe twice a month, we’d want to monitor your epilepsy - just a couple of hours. It would not affect your family or your job unless we (including you and your family) determine that some minimal surgery can help your situation.”

“Can I call your home in the next couple of days and meet your husband, children, and even your parents and discuss what this study might entail?” 

Danni didn’t know what to say. Epilepsy had been part of her life since she was five years old. Why she didn’t like having seizures it was part of her. It was even a good excuse sometimes - like when she was asked to be a room mother for Sydney’s preschool, Danni said, “I’m sorry - but I have epilepsy.” 

Danni said, “Yes”.  

Dr. Schwarz suggested next Tuesday night. Danni said she would check with me but that it probably would work.

*****

On Tuesday night, Danni, her parents, my parents, Dr. Schwarz, and I met at our house in North Haven. (Danni’s mother joyfully volunteered to help with Sydney and Nathan).  

Dr. Schwarz had his computer and a PowerPoint Presentation. It showed a normal brain and Danni’s brain (Danni had given Yale-New Haven access to her files). He showed some other brains - before and after the microsurgery and described the control of seizures before and after.  

He discussed the research aspect of the study. He said, “Cancer is the number one health research area with the most funding. Alzheimer’s is second in terms of study. Epilepsy is about number twelve in research funding and projects.” He showed publications he and his colleagues were doing on epilepsy, how advanced the projects were, and the success factors.

He discussed the implications of the surgery. It was minimally invasive - with precision laser technologies.  

Yes, there were possible side effects and pitfalls. 

At the end of the evening, Danni and I agreed to let her be part of the research study, with both sets of parents also agreeing. 

Over the next six months, Danni had at least one MRI of her brain, pinpointing locations of seizures. 

She underwent the surgery on a Tuesday last January. Since then, she has not had any seizures or episodes.

****

Epilogue

Danni can now drive. We went to upstate New Hampshire to see the fall colors, and she moved half the trip (with permission and encouragement from Dr. Schwarz). I am incredibly pleased that Danni can have an everyday life with our children and with me as her husband.

**********

Today’s story is based on an actual situation. Steve and Danni are friends and are married. Danni does have epilepsy.  

Research does exist in all kinds of medical areas - and epilepsy is one of those areas of research. (And, although in a different medical department at Yale-New Haven, a friend (with a team) had been nominated for the Nobel Prize in Medicine.