Michal’s Story: Lost and Found

(1/7) “In My Head”

I was blessed throughout my entire life to lead a relatively normal life with no real drama. While certain things took their time, other things happened rather quickly. But I was happy and life was definitely good. I felt physically invincibile, and I was always able to perform.

Professionally, I was always in the the public eye and I loved being in front of an audience. Whether it was teaching my seminary students at Midreshet Moriah, guiding multiple groups weekly at Yad Vashem, leading groups in Poland a few times a year, and working in Camp HASC every summer; that’s where I felt most comfortable. My professional life, thank God, was full of opportunities, and it felt like I was pushing myself professionally and moving fast.  

My husband was at the final stages of completing his doctorate, my daughter was a happy three-year-old.  My life felt settled. Not that everything was perfect, because it never is, and I had my share of personal roller coasters, but at this point, everything felt like it was on track.

In May 2012, I was guiding a group of Israeli soldiers through Yad Vashem. I was standing in the room dedicated to the Warsaw Ghetto, something which I could talk about in my sleep, and all of a sudden everything in front of me turned into a green blob. The colors of their uniforms just took over, and everything was green. I grabbed hold to the railing on the wall and just continued talking from memory, while my focus was completely gone.

The next week it happened again. I was teaching in class, and all of a sudden all my students morphed into one mass, and I felt as if I was going to faint. I didn’t faint, but that helpless feeling was terrifying.

This was the begining of me realizing that something could be happening to me.

It got progressively worse over the summer. I was in Camp HASC and I just could not eat in the dining room. The dining room in which I had eaten every summer was suddenly too loud. The plates on the tables, the silverware clinking, the squeaking of the wheelchairs. Everything bothered me. I felt overstimulated and it made my brain feel weird, whatever that means. I had gone to the infirmary a few times, but I didn’t have very many concrete symptoms, so it was hard for anyone to really help me. I felt lightheaded. Constantly lightheaded. Like I was going to faint or lose my balance. But I never did, and I had no idea what was wrong with me.

When I got back to seminary in the fall and started the new year, I was so excited to start teaching again. I was thrilled to be reunited with our shana bet girls, and to meet the new shana aleph (incoming) students. But immediately I knew that something wasn’t working. There was a disconnect between how I was feeling and what I wanted. Physically I felt like my brain wasn’t connecting to my soul. My soul wanted to teach, so badly. It yearned to teach, but my brain felt like it was just getting stopped from doing the work.

Around the chagim I went back to the doctor, and then another, and then another. I was looking for someone who would throw me an anchor, and have some sort of suggestion, and of course, care. They dismissed my symptoms. They suggested perhaps I was just dehydrated. Maybe I needed more rest. I tried to explain that it felt like my brain was going to explode. They all told me it was just headaches or stress, and that I would be fine. No one took me seriously.

I was at the end of my rope. I could see that it was getting worse and worse. I just could barely teach anymore. It was so painful, because I loved to teach and I had no idea what was happening to me, and if I could continue like this.

One night I was teaching and I stood up underneath a light bulb that was hanging particularly low, and I saw stars. I was terrified because I knew something was happening but it felt like my brain was broken. There really no other way to describe it.  I excused myself, ran outside to the parking lot, sat down on the concrete with my head in my knees and had my first panic attack. I was breathing in a way that I had never before. I actually thought I was having a heart attack.

Up until this point I had been doubting myself. Maybe was I making it all up in my head?

It was that night that I realized that something was really wrong. I came home feeling, ‘I almost died tonight.’”

(2/7) “Dismissed”

“That moment was when I decided that I needed to do anything I could to be taken seriously. That I was not going to allow dismissive attitudes of doctors to determine my future. I am not a passive person, but when you hear that ‘it is all in your head’ enough times, you start to doubt yourself. For so long I had thought, ‘Maybe I am making this a much bigger problem then it actually is?’ But that night, the doubt left me and I was terrified that my whole life would stop in its tracks.

I went into the medical clinic that I had been to in the previous months, each time trying out a different doctor. And this time I waited for the only doctor left in the practice that hadn’t dismissed me already. She was the director of the clinic. The head physician- a name that everyone throws around as the person who ‘you must see.’ But I never made an appointment to see her because her waitlist is so long. So I waited till the last patient left the office and stormed in, uninvited. I sat down, broke down, and said to her, ‘There is something terribly wrong with me. I have seen every one of your doctors, and every one has sent me away, but I know that something is not OK, and nobody believes me and I’m starting to feel as if my life is a time bomb.’ Her disappointing response was that she recommended that I see a psychiatrist, because this was clearly a mental health issue, and sent me on my way. She thought I was having some sort of a mental breakdown.

In my head, I thought that since she dismissed me, that was it. Her level of authority must have meant that I was wrong, and I was making it all up. All the self-blame, self-victimization was flooding back. I walked home thinking I must actually be going insane.

Then she did the one thing that I think saved my life.

She called me back to apologize.

After I left her office, she was concerned for my well-being, and she went to the psychiatrist in her practice to discuss my case. This second doctor told her that my emotional and health history did not fit the symptoms that she was describing. It could very well that something was wrong with me medically.

She called to apologize for dismissing me. She asked me to come in the next day to talk.

When I came in, she gave me a whole list of tests to take; an MRI, a CT Scan, an ultrasound of the neck and more. Finally a moment of humanity. Someone out there was listening. She cared. She was engaging in creative thinking to help me.

I took a step back from my teaching and I spent several months doing testing, all over Israel.

In the meantime, I had a neurologist appointment that I had scheduled a while back and waited several months for. I went on October 29, 2012.

A day I will never forget.”

(3/7)“What Never Came Back”

“I went into the neurologist’s office mostly anticipating a dismissive doctors appointment like all the previous ones. But after speaking to me for and listening to my symptoms she looked me straight in the eye and said, ‘I think you have epilepsy.’

Although I heard her words, I could not really accept what she was saying. This was the opposite of everything that had happened until now. Until now, I was dismissed and here someone was instantly offering me a diagnosis that terrified me. I didn’t know which one felt worse.

I responded to her rather calmly, ‘I don’t have epilepsy, and this was a bad idea for me to come to see you.’ I stood up and she handed me a referral for a test she wanted me to take and her business card. As I was leaving she said, ‘Just do it. And send me the results.’ I flipped over the card, and I discovered she was one of the premiere epileptic specialists in Israel.

So, I went to get the EEG that she recommended.  

One night about two weeks later I came home from work to a letter in my mailbox, from the hospital. The envelope held the results of the EEG test. The letter read, ‘Your brain is not functioning normally. Bring these results to your doctor.’

I was so taken aback I didn’t know what to think. ‘What on earth does this mean? What could it mean? Am I dying? Do I have a tumor? Do I have cancer?’

I took a leave of absence from work. I had no idea what was going on, but I knew that I would need everything else in my life to stop, in order to take care of it.

I had my follow up appointment with the neurologist ten days later, on December 10, 2012.

In my psychotherapy years later, I always go back to this day as the moment where everything went wrong. The worst day of my life.

My doctor looked at the results. My brain was having short abstentee seizures. The lightheadedness I had been feeling for the past year, the undefined and vague feelings of ‘my brain hurts’ were in fact, very mild and slight seizures. The kind that you don’t black out from, but the kind that cause a quick electric short in your brain. And in as clear terms as she could say, she explained. ‘You have adult epilepsy, which is extremely rare to develop at your age.’

And then the speech came. ‘Your life will have to change forever. You will not be able to drive. You can’t go back work. You shouldn’t be back in a classroom setting. You can’t go on a plane. You body will not be able to sustain pregnancies.’

‘Because your brain is susceptible to seizures, any kind of slight pressure or anxious situation thing can trigger a grand mal seizure.’

My entire life and all my future dreams were gone in one instant. Having more children, all my work, going to Camp HASC, going to Poland, even just teaching in a classroom: all of it gone.

At that moment, the train of my life derailed onto a different track.”

(4/7) “The River”

“A voice came out of my throat that I didn’t recognize. It wasn’t even a voice. It was a wail, from a pain inside of me that threatened to rip me to pieces.

The doctor rattled off things that I would have to worry about. I would not be allowed to cook without someone in the home with me in case I had a seizure while the stove was on. I couldn’t give my daughter a bath by myself, in case I blacked out while she was in the bathtub. I would not be able to go to the grocery store when it was busy. All my independence, all my roles, all my hopes, everything I was…was gone.

I did not recognize the woman that walked out of that office that day. I think I just died within myself. How do I redefine myself, as someone who has lived a life of accomplishments up until this point, and then nothing further?

The doctor told me, ‘You cannot bring anything into your life that has any amount of stress. Nothing.’

I thought my life was over.

That day I went home and got into bed. I did not emerge for three weeks. I had nothing to say to anyone.

Several weeks later, my three-year-old daughter came home from gan one day and came into my room. She asked, ‘Are you going to throw me into the river?’

I had no idea what she was talking about.

She said, ‘I learned in gan about Moshe Rabbenu’s Ima, who couldn’t take care of him. So she put him in the river. My Ima can’t take care of me, so are you going to put me into the river?’

This was a punch in the stomach that I couldn’t take.

Seeing how my daughter saw me made me realize that no matter what, I had to keep trying. I needed help. I got up and called a therapist. I had lost everything for the future, but I had to hold on to what I had.

I had to at least be a parent.”

(5/7) “We Are All Human”

“Everything got more intense and difficult after that. I was taking heavy -duty neurological medication. I was deep in depression, and the medicine was making me sick. I even developed a serious allergy to it. It was the wrong medicine and I needed to get my blood levels checked every few days.

I began seeing a therapist who specialized in ‘capable people who are given a medical diagnosis that changes the course of their life.’ I struggled through therapy and things were getting worse. I don’t think at that time I was open enough to therapy and how long the process could take, and I just felt frustrated. My symptoms were getting worse, too.

I couldn’t go food shopping because the lights of the supermarket made me feel like I was going to faint. I would time my shopping trips to when there was no one in the market because I couldn’t wait in line. It made me feel like I was going to faint. I started taking anti-anxiety pills, and I had never been an anxious person. I was nervous that everything was going to make me have a grand mal seizure.

I had been an unstoppable train, and then it all crashed.

I couldn’t face myself. I couldn’t face anyone.

I couldn’t understand why the medication wasn’t working to make my brain better.

The doctors did more testing, to try and figure out why the medicine wasn’t working. First I tested positive for autoimmune disease. They told me maybe I had Lupus. Then they changed their mind.

In February, they told me that I needed a video EEG of my brain. I would have to stay in the hospital for a week, while they monitored my brain 24/7 to figure out what was going wrong. The next appointment available for a Video EEG for a week was in November.

Things continued to deteriorate, I was no longer functioning. I was pretty sure that with continuing this medication and the seizures getting worse, I might actually be dead by November. I begged my doctor to intervene on my behalf. She told me there was nothing they could do.

So for the second time in this journey, I waited outside the office of a doctor until she was finished with her patients and I went in, uninvited. This time it was my neurologist. I was determined to get that Video EEG appointment moved up, no matter what. So I spoke. I yelled. I banged on her table. I cried. I begged. I pleaded. I fought with every fiber of my being for her to intervene on my behalf and try and get the appointment moved up because I knew I wouldn’t make it till November.  And then I walked out of her office.

Three days later I got a call, that suddenly there was a bed opening on March 6th for me to get the Video EEG. Turns out, despite her not responding to me then, my neurologist had actually advocated for me after my visit to her office.  

On March 6th, 2013 I checked into the hospital and got my head wired up for the week. I lay in the hospital bed, staring at my own brain waves which were being monitored on the computer screen at the edge of my bed. I was allowed to disconnect from the wires for ten minutes at a time, in order to go to the bathroom.  No electricity was allowed in the room. I couldn’t charge any devices, so I saved the phone for when I needed it. Most of the time I just stared at the brain waves, wondering what they were hiding.

It was really difficult for me, when every morning the doctors would do rounds, and discuss my condition in front of me. I felt invisible. ‘Michal is a young mother, with all these symptoms. Can anyone tell me what she has?’ And then I sat there as the doctors rattled off their best guesses about what could be wrong with me. Hearing the possibilities put all these scary ideas in my head about what could be wrong and frightened me even further.

After eight days, I hadn’t showered, eaten properly, or slept. I barely felt human. I wanted to so badly to just get home. Before they were going to release me, my neurologist came to see me together with one of the psychologists at the hospital. They hinted to me that while my scans show absentee seizures, they weren’t epileptic. Through conversation which I could barely follow considering the state I was in, they got me to sign a paper absolving the doctor from any responsibility related to my condition. I would have signed anything at that point under those conditions.

After I signed, they retracted the diagnosis of epilepsy in the paperwork.

I was too sick, too frightened, too confused to understand what was going on. In my gut I knew that something was not right.

My neurologist never explicitly told me that she knew had been wrong.

I never heard from her again.

Thinking about her later in life, I have very mixed emotions. Anger at the quick (mis)diagnosis and the toll it took on my life, and yet also gratitude that she was the first doctor in this journey to take me seriously upon meeting me and didn’t dismiss me. I am eternally indebted to whatever intervention she did on my behalf. That was real kindness and showed that she cared.

I am left with the awareness that humans make mistakes. Even good-intentioned ones. Still, I wrestle with the residual consequences that the misdiagnosis wrought on my life. It bothers me that she couldn’t face me with the mistake and figure out what the next step would be.  

Understandably, I still have mixed feelings. Resentment, gratitude, anger, relief, and confusion.

I have accepted all those feelings can be true at the same time.”

(6/7) “Rare”

“After chasing down the neurologist who misdiagnosed me with no luck, I was confused. My scans were clear. I did not have epilepsy. But now I had nothing. I was so scared and we were back to square one.   

My internist, the director of the medical center who had been overseeing my case from afar (ever since the night I stormed into her office), still believed there was something wrong. We had scans from previous tests proving I was having seizures. There was nothing really to do at this point anymore, so I just sat at home living in the definition of no-man’s land.

About a month or so later she called me up and said, ‘I know you are going to think that I am crazy, but I’ve been doing a lot of research on the symptoms you have, and I want you to take a test for Celiac disease.’ Celiac? The condition where people have stomach aches? That was the first time I had heard that word the whole year.

My stomach was fine. I never experienced unusual stomach pains. What she was saying to me didn’t make any sense. She had read an article in a medical journal and was suggesting it as a possibility to explore.  This doctor didn’t owe me anything. She just was a caring woman and a good doctor who wanted to help me. So I indulged her. I went for the blood test.

I got the results for my blood tests online. My numbers were through the roof.

They were so high that my internist got me an appointment with one of the top gastroenterologists in the city that week. The doctor said to me when we met, ‘You must have terrible stomach pains.’ I did not. He said, ‘No one who has numbers this high does not have excruciating stomach pains unless it was not you who took this test. I am going to do your endoscopy myself.’

Because my numbers were so high and my case unusual, I didn’t have to endure the long wait till I would be scheduled for an endoscopy. It was scheduled for the following week.

I went to the hospital for the day and they did the endoscopy. Three weeks letter I once again got a letter in my mailbox from the hospital, only this time it read, ‘You are diagnosed with Stage 3.5 (out of 4) Celiac Disease.’

The gastroenterologist told me that my intestines were crushed. He couldn’t understand how my symptoms manifested neurologically. I have gluten-induced absentee seizures. A condition that could be under control if I went on a completely gluten-free diet. I was a rarity.

All of a sudden it seemed I had an accurate diagnosis. If I followed the right diet and cut out what was making me sick, I would be ok.

I could feel alive again.

And for that, I have endless hakarat hatov to my incredibly dedicated and kind physician, who never gave up on me and as a result, saved my life.

That summer I went back to work at Camp HASC. Thank God I did, because they helped me with the transition to my new gluten-free diet. I literally didn’t know what gluten meant. Every day, the amazing kitchen staff prepared for me gluten-free meals so I could eat like everyone else. That time reinvigorated my life and helped my body heal. It helped my soul heal. I could be doing the work that I love.

I had hope I could be myself again.”

(7/7) “Moving Forward”

“It took me a very long time to get my life fully back on track. My confidence was shot. I just could not get over the fact that it felt like my whole life had been derailed by something fake. Something that wasn’t real. It wasn’t a malicious diagnosis, just an incorrect one. An incorrect one that had an emotional price tag that came along with it. I was never epileptic. Medical professionals told me I was, but it was never true. I took months of highly toxic neurological medication that could have made lasting impacts on my body, that I didn’t need. I just couldn’t let it go.

How could I be traumatized by something that was ‘never real’? That question has taken me years to work through. But with time, through a lot of prayer, and going through a six-week intensive EMDR therapy treatment, I began to learn how to hold on to what I discovered about myself throughout this journey and let go of the pain that had accompanied it for so long. And I had to learn how to draw strength from the past without getting stuck there. It wasn’t always easy. It still isn’t easy.

Yet, my time in illness changed me. I suddenly had more patience for things that I never had patience for before. I hope I am a better teacher now because I realize how much what we project onto people seeps into their understanding of themselves.

I am so careful now when I speak to my students, and I understand how a statement from an authority figure in your life can affect how we feel about ourselves, and the potential outcomes that are born from that. If you reassure your students that they can handle their life and their work, they are more likely to think that of themselves as well. If an authority figure tears them down, it will likely affect their belief in themselves. I have become a much more reassuring teacher.

I cut down my teaching hours in order to be home for my kids every single day, and be at home a couple mornings a week because this felt right for my family. I have not yet gone back to guiding at Yad Vashem, something I miss terribly. My professional life and vision of who I was have changed, and I am learning the new me through this adjustment.

I also feel that this has taught me how important it is to be one’s own medical advocate. You know your body best. And nobody, nobody, knows what’s in your soul but you. And if you think something is wrong, you have to fight for it.

Fast forward two years and my son was born on October 29, 2014, the two-year anniversary date of my first meeting with the neurologist. My third child’s due date was on December 10, 2018- six years to the date of the epilepsy diagnosis.

I don’t think these dates are an accident. They serve as a tikkun, an opportunity to change those days from bitterness to sweetness. From darkness to light. From utter despair to ultimate hope.

God is saying to me, ‘Those dates can move forward,’ and so now I respond, ‘So can I.’”

We don’t know what lies ahead. Everything in life as we get older and live more, feels more fragile. In the past, I took everything for granted, even though I never thought I was. Now I am so aware of the small blessings in my life.

We go through life with so many dreams for ourselves in so many different areas. And sometimes those dreams are shattered, or rather- redirected. And if we don’t learn to dream new dreams, and if we aren’t willing to wake up and leave behind certain dreams in order to move forward, we can become stuck. Emotionally, physically, and spiritually stuck.

Those unforgettable days when I was laying in a hospital bed watching my own brain waves felt strangely like I was watching my own funeral. It forced me to consider, what had been my greatest accomplishment? Being a teacher? A guide? A mother? All together? What were my new dreams? What was I most proud of and what did I regret? What do I want to do with my life and what kind of person do I really want to be?

Those thoughts both haunt and humble me. Paralyze me and empower me.

And six years later, I am still thinking about it. Actually, I hope I never stop thinking about it.”