Before, After & NOW: Life With Epilepsy

Author: Tali Wohlgelernter

I think every person has the ability to look at their life as a series of “befores” and “afters”. In most cases, the befores and afters are moments to be commemorated or even celebrated, but once in a while those moments can be so life changing that it is hard to imagine what life was like “before” and it’s hard to imagine that there will ever be an “after”. 

Until about 2 years ago, I would have said my befores and afters were pretty standard, important milestones which were marked and acknowledged, but nothing unexpected or shocking. Before college, after my wedding, before having a child, after moving to Israel.  That is, until Friday night, September 14, 2018. That night will forever be the night of the most defining before and after moment of my life.

Before that night, Friday night davening (prayers) was my favorite part of the week. Before that night I thought my purpose in New Brunswick was to be the OU-JLIC educator at Rutgers University.  Before that night my biggest worry when taking my kids out was “do they match”. Before that night my four daughters were healthy. 

All that was before my seven month old baby, Sarena, had a seizure that began her journey with epilepsy, and led us to a diagnosis of Dravet Syndrome, a rare form of epilepsy caused by a genetic mutation. It was only after her seizures began that I was able to look back and see with clarity why certain things happened the way they did. Before her seizure, it always seemed odd to me that my husband and I chose to pursue an opportunity and leave Israel to work with Jewish students on campus at Rutgers University. We had finally gotten used to living in Israel, gotten used to the weird way the toilets flush and the funny taste of the water. Both sets of grandparents just moved to Israel, all our family was there. We were living the dream! Why on earth would we uproot our lives and start something new? 

Shortly after arriving at our house in New Brunswick I remember thinking to myself “what in the world did I get myself into?” A year later, after Sarena had her first seizure, and we realized we were within 1 mile of a fantastic children’s hospital,  there is one thing that became very obvious. God truly put us in the right place at the right time.  Now, I know Israel has a pretty thriving medical system, but I have no doubt that our journey to diagnose Sarena and come up with a treatment plan went as quickly and smoothly as it did because we had access to the doctors and medical professionals at the hospital down the street from our house.

The night of Sarena’s first seizure will always be representative of the time  before I knew anything about seizures or epilepsy. Before that first seizure, I was spending that Friday night as I had done for so many weeks before. Seven month old Sarena was laying on a blanket on the floor of my office, I was speaking with some students and entertaining my three other daughters while prayers were held in the next room. Everything about that moment was unremarkable. Until I noticed that Sarena’s eyes began to look like they were rolling up and down, and would not stop. I  told my oldest daughter, who was nine years old at the time, to go into the shul (synagogue) and calmly get her father. While I was waiting for him to come out I saw that Sarenas arm was jerking up and down and I knew something was not right. I had never seen a seizure in person before, and this was definitely not what I expected one to look like, but somehow I still had a feeling that’s what was going on. When my husband came out and saw her, he agreed and we decided to take her to the hospital, even though she already seemed to be returning to her baseline. After confirming that one of the students we were close with would stay with our other girls, we began to make our way to the hospital. Since Sarena seemed fine, we decided it would be quicker to make the five minute walk to the hospital instead of waiting for an ambulance.  It turns out, that was the longest five minute walk of my life. As we were walking, even though Sarena looked fine, I felt in my gut that something was wrong. I just kept repeating over and over “oh my gosh, somethings wrong, something isn’t right. I know something is wrong”. When we walked into the Emergency Room I was worried they would think I was crazy or would not believe me,  because Sarena looked perfect.  After explaining what we saw, they immediately brought us back and began examining her, and ultimately decided to admit her for observation. They told us that because they suspected that Sarena did, in fact, have a seizure, they wanted her to have an EEG, a test that would examine the electrical activity in her brain to check for abnormalities. 

Sarena was attached to the EEG for 2 days and had an MRI done to check the physical structure of her brain. During that time her behavior was totally normal and I really hoped this was just a scary bump in the road. I really thought maybe we could move on to “after the time Sarena had a seizure”. 

After 48 hours being hooked up to the EEG, the on call neurologist came in to talk to us. She explained that the MRI looked normal thank God, but that Sarena’s EEG showed abnormal activity, which could indicate some form of seizure disorder. She told us that Sarena would need to take anti seizure medication every day, but that we could go home. We left the hospital dazed, confused, and blissfully naive. I knew nothing about seizures, epilepsy, or what could be the cause of it, but I sort of hoped the medicine would keep the seizures away and life could go back to normal. 

Life did not, in fact, go back to normal. Two weeks after Sarena’s first seizure, 40 minutes before candle lighting for the Jewish holiday of Sukkot, at the height of the pre-holiday rush, Sarena started to have another seizure. I was so excited to get her dressed in her new outfit, matching with her three big sisters of course, when suddenly her entire little baby body started shaking. This time, there was no denying it, she was having a seizure. I laid her down on the bed and hoped that, like the first time, this seizure would stop on its own. We called 911 anyway, just to be safe. While we waited for the ambulance to show up, we watched as the seizure kept going. And going. And going. When the paramedics arrived, Sarena was still actively seizing. They tried to stop the seizure before transferring her to the ambulance, but after several attempts with no success, they made the decision to put her in the ambulance and take her to the hospital. We left the house with the smell of holiday food in the air, our sukkah ready for over twenty guests, and my sister and brother in law in charge of it all. 

 By the time we got to the hospital she had been seizing for over 40 minutes. We were rushed straight to a trauma room. It is a memory that is simultaneously the most clear in my mind, and also so surreal it seems covered in a fog. Suddenly my little 7 month old baby was surrounded by countless nurses and doctors, with the most senior doctor standing at the foot of her bed overseeing everything and giving out orders. “Ok, team, lets stop this seizure”. 

When the doctors were finally able to stop her seizure she had been seizing for over an hour and a half.  The doctors explained that she required very high doses of medication to stop the seizure, and  that the medications could also affect her ability to breathe. In order to make sure she did not stop breathing, they needed to intubate her. The next few days are really just a blur. Looking at Sarena in a hospital bed, with a tube down her throat, it was impossible not to feel helpless. There was nothing I could do to make her better or to change her situation. The only thing I could think to do was to call my parents who were in Israel. Within 24 hours my mother and father walked into the hospital in New Jersey. Knowing that I had my parents there to support me gave me the strength I needed to be there for Sarena.

 The months which followed were filled with countless seizures, hospitalizations, and doctors appointments. Before Sarena started having seizures and was diagnosed the word seizure was a scary unknown, and after, it became a new reality in which seizures happened every day. Hearing the words “Sarena is having a seizure” became as common as saying good morning and good night. We were no longer in a state of if she would have another seizure, it was just a matter of when. 

The road to her official diagnosis does not have a clear beginning or end. Very early on in the process the neurologists mentioned that she may be having seizures as a result of a genetic mutation, but were very vague as to what that could mean. Test after test led us closer to a diagnosis, closer to another after. Before we sat down with the doctors to hear her diagnosis, I thought we were ready to hear it, after they told us I realized I don’t think I will ever be ready. 

After that appointment, google became my best friend and my worst enemy. I spent hours looking up all things epilepsy and Dravet Syndrome, but that was pretty depressing, not particularly productive. I also spent a lot of hours curled up in a ball, crying, which was also not particularly productive. Looking back at those first few months of constant seizures and constant fear, I really feel like they happened to someone else. It is hard to believe that I was the person who had to leave a work meeting because my baby was having a seizure. Was it really me that had to run out of the airport right before my flight was boarding because I got a call that Sarena was on her way to the hospital? How is it possible that it was MY 9 year old stroking her baby sister’s head while she had a seizure in her lap? It seems impossible that I had to decide between going in an ambulance with Sarena or leaving my seven year old and three year old home alone. Every time Sarena has a seizure, I see myself become someone I never thought I could be. I find strength within myself that I never wanted to need. It is in those moments that I realize that the person I was before her diagnosis has helped me face the person I need to be after. 

There are days when I find myself unable to face the reality of the situation, unwilling to accept that this is really happening. Those are the days that have me using my two favorite words. I. Can’t. I can’t make dinner or do homework or read books. I can’t deal with more doctors appointments or therapy sessions. I can’t be the mother Sarena needs me to be and be the mother her three older sisters deserve. I can’t face the fear of what Sarena’s diagnosis could mean. I wish I could say that I found a way to get over those hard days. A special trick to snap me out of the darkest moments. In truth, the only thing I have found is that sometimes those moments are necessary, sometimes it is ok not to be ok.

 I have also learned that it is possible to feel multiple emotions at the same time. While fear is a constant, right at the top, joy follows as a close second. I do not think I will ever again have a moment that does not include fear of what is going to happen to Sarena next. At the same time, every moment with her and her sister fills me with so much happiness, it brings me to tears. The joy does not take away the fear, but the fear also does not take away from the joy. There are times that these conflicting emotions make me feel like I am a fraud. How can I enjoy anything in life when I have this heavy, very real, fear pulling at me. How dare I give value to anything other than Sarena’s diagnosis? 

It took me a long time, and I am still working on it, but once I learned that we are capable of living with conflicting emotions, it became much easier to deal with the hardest ones. Just because I am upset about her diagnosis does not mean  I am not thankful for the incredible doctors who are taking care of her. Just because I was disappointed I had to miss the holiday of Purim to be in the ICU with Sarena last year does not mean I am not looking forward to planning a more amazing one for this year. Just because I am angry that she has Dravet Syndrome does not mean I do not appreciate that out of all the rare types of epilepsy she could have, she got the one that is highly researched. Just because there is not a cure right now, does not make me think there will not be one in Sarena’s lifetime. As hard as it is, these contradictions are what help me deal with the day to day. If I am able to face what is right in front of me, right now, and not worry about how I will feel in an hour, how will Sarena be in an hour, I am able to make the current moment much more meaningful. 

Until recently, I thought my life was only about all of the befores and afters. I was constantly looking back, trying to relive the past, or sometimes erase it. Sarena was such an easy newborn, what if I missed something early on? If I had not taken Sarena out in the heat, would she not have had that seizure? When I was not looking back I was trying to look ahead to what will be next. When will Sarena’s next seizure be? Will there ever be a cure? How will our family survive this? What I have realized is that instead of looking back, or looking forward, I can look at right now. Right now I am back in Israel, surrounded by my family and friends, with an incredible medical team caring for Sarena. Now I see that in life, it’s not about “the befores” and “the afters”, rather it’s about  “the now”. 

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