My Journey of Epilepsy
July 2006, age 33, I woke up after having multiple sensations of what I had been describing as “heated nausea” for several months. I kept thinking I must have acid reflux. I had recently divorced from my husband, and my 3 year old daughter and I were living with my parents. My first grand mal seizure came one morning when I began walking down the hall to tell my Mom I did not feel well and was not going to work that day as I’d had heated nausea spells all night; my eyes began to blink one at a time on their own. That was the last thing I remembered until I came back into consciousness and my neighbor was praying over me. At that time, neither my neighbor nor my Mom had ever seen a seizure before and my Mom was terrified that she had just witnessed me die. I’d had an extremely difficult, life threatening pregnancy and delivery of my little girl, so she did not know what was happening to me. God must have sent angels down that morning to hold my daughter’s ears, because she never woke up with all the excitement going on and paramedics in our home.
The first neurologist I saw was a very nice man. He ran several tests, but could never catch any seizure activity. He placed me on some kind of seizure medicine that I would increase over time. Unfortunately at this point, I can’t even begin to remember how many different medications I have tried, or the side effects that each one has had. Some have done okay for a while and then kind of “wear off”, and some instantly give me bad side effects. I did well for a while and was even able to drive again until 2008. After a while, that doctor became either worried or tired and referred me on to a well- known research hospital in hopes that they could find something he couldn’t.
I was very hopeful that I would receive answers – and a cure – from the hospital experience, but it certainly did not go as expected. Nor did anyone prepare me for my release home and what would happen next. The most positive part of the stay was that they were able to track some seizure activity located on the right side of the brain. It was in the right temporal lobe. They were not sure why or how but thank the good Lord it was NOT a tumor. Unfortunately, the immense stress of everything that I went through at the hospital caused me to begin having something called “pseudo” seizures. Once I returned home, I continued with the “pseudo seizures” (the word pseudo made me feel as though people thought I was faking them – more stress!); I went from having occasional seizures, to multiple seizures every day. We immediately called my physician and were not prepared for the cold, uncaring, and lack of counsel we received. I was flatly told to see a psychiatrist. Of course this made no sense to me or my family, as these had not occurred until I was hospitalized for testing. We had NO idea what he was talking about, and got very little help from that neurologist after that. In all honesty, I felt completely abandoned by my doctor. The “pseudo seizures” were incredible, as I was having 15-20 of those as day. I could barely function. This terrified my family, especially my little girl. My hospitalization was the beginning of an out-of-control, downward spiral which continues today.
Dr. Number 3 was a well- known doctor in Rome, and was very helpful for a while. He identified the “pseudo-seizures” as conversion disorder and explained that many people that have epilepsy have them as well. But as a social worker, my pride was having a very hard time trying to accept the fact that I needed a psychiatrist. How could I simply not handle my own problems, when I help other people with theirs? Basically, it was explained to me that it was my brain’s way of dealing with the stress of the seizures. Once you have so many epileptic seizures, your brain learns that “pattern of behavior”. It is an unconscious thing that happens. But I still felt extremely guilty for it occurring. At this point, I was in a very bad place, and I was also on a medication that many people have been known not to handle well at all. I was one of them.
Depression really started to kick in and my emotions were all over the place. I had already missed a lot of work due to the seizures, and doctor appointments. The medicine made me feel bad all the time, and I just felt like I was in a dark hole. Each physician told me that it was very possible that they could get it under control and I would never have another one, so I believed each and every one of them! And then… I would have another. So, this doctor began a pattern of running late for every appointment even though my Dad drove us one and a half hours to see him. He also began to cut his sessions short. So, we decided it was time, once again, to change doctors. I think after a while, that if the doctor begins to feel defeated he wants you to move on…that’s my opinion, anyway.
I am now on Dr. Number 4. I have been with him for almost two years. He seems to be the most attentive that I have had so far. But bigger challenges have gotten in the way between treatments from 2006-2014, so he can only do so much. I no longer have insurance, and am a self-pay patient.
I was employed as a school social worker in a small, rural county for over 11 years and I loved my job. The initial superintendent I was working under when my seizures first began was very accommodating, but then became very strict and insisted that I go home NO MATTER how big or small the seizure was. He took that decision away from me. He had stated more than once that I was a liability and a disruption to everyone else. So this began making an already difficult situation even more challenging. Obviously, my absences increased with this new rule, but I did make sure I had a Family Medical Leave Act form signed by my neurologist so that he could support why I would be having absences. I thought this meant my job would be protected from my medical condition. I was wrong.
After this Superintendent completed his duty, a new one came on board; I was very hopeful that he would be more accommodating, but things became 100 times worse. My co-worker that I thought was a “close friend” for several years, corroborated with him to get rid of me. She had become very cold towards me and stayed that way for months. I tried to talk to her about it to no avail. I became suspicious that they were looking at terminating me around the spring of 2012 when I found my secretary in a meeting with the Superintendent and their attorney. When I questioned her and she responded, “I can’t tell you”, I knew my job was in jeopardy. It is almost as though everyone had unanimously decided, “Okay, we are sick of you….get out.” I contacted an employment attorney in February, but he could not get everyone to meet with us until April. They did not want to cooperate with any accommodations, and so the retaliation attacks began. I had opened Pandora’s box. I do not think the Superintendent was expecting to see me fight him for my job, but I had worked too hard to get it. I just wanted to be able to keep my job, but they were going to make sure I hated every minute of it.
I did get a contract for the next school year, but I was also placed on a “Professional Action Plan”, which had unrealistic and ridiculous expectations of things I was to do. It became obvious they intended to set me up to fail. I was required to meet with my supervisor regularly to measure my compliance with the plan. My supervisor was the Assistant Superintendent. He had never been a School Social Worker in his career.
By September, I was getting written up almost once a week, for absurd and often times false accusations. I had NEVER been written up in my career…EVER! I was never given a fair opportunity to discuss or defend whatever violation they had dreamed up. The write-ups were automatic, based only on what someone had told them I had done wrong. At first it bothered me, but then it almost became a joke between myself and my family because we knew they were building a case to fire me in retaliation of my efforts to stop the workplace discrimination. Because I could not drive, my parents provided me with transportation to and from the job. When I would get in the car at the end of my day, my dad would ask me “How many write-ups did you get today?” They went as far as to write me up after falsely accusing my dad of using an inappropriate hand gesture towards a county employee while waiting for me in the parking lot. He never did such a thing, and in fact, was reading his bible. He was trying to help me keep my job, not put my job in jeopardy.
Eventually the Superintendent won with his retaliating write-ups and impossible expectations, and I was forced to resign on January 18, 2013. The last year of my job was a very difficult time in my life and I now suffer from PTSD as a result of it. I am still trying to heal from all of the damage caused.
Although I reached out to the EEOC for protection long before I lost my job, I did not get a finding until very recently, now 2 years later. They did not find it was discrimination because they said the evidence I presented was too old even though they were given the charge letter in August 2011, along with a very thick stack of evidence. The evidence presented included a thick chart where my secretary had been instructed to keep a log of my seizures without my knowledge or consent. I was appalled to learn that they had even documented seizures that had occurred on my personal time, such as when I was being seen at an urgent care facility for a migraine. Another county employee had been there at that same time, and went back to my job and reported a seizure that occurred while I was in the waiting room.
Though I did not win that fight, and there will not be a Lifetime movie made after me….it was important for me to hold on until they let me go, because I had to teach my daughter that if it is important to you, do not let go of it; and, do not let people take away from you what you have worked so hard for without a fight.
I lost my job. My daughter and I lost our home. Our sweet Yorkie puppy was killed by a car on the day we moved out of our home, right in front of my father’s eyes, by a driver who sped up when he saw her, then did not stop after he ran her over. My daughter had to change schools, and leave behind the friends she had known since pre-school. My family lost faith in the system, and in most people. We learned that the laws to protect employees from discrimination and retaliation are not upheld, therefore are not worth the paper they are written on. I lost my insurance. My daughter receives very little child support. How in the world could I pay for my medicines every month that are in the range of $2500? It just felt like nobody gave a damn anymore. These were some of our darkest days.
I also began the application for Social Security Disability after I was terminated, because at that point there wasn’t much left of me. I am still fighting for this, as I have been turned down twice because of my young age, and my education. My attorney states that my documentation looks good, but again she is concerned about my age and education. It does not matter that the multiple medications I am on have failed to control my seizures, have negatively impacted my ability to remember and focus, cause me to sleep most of hours in the day, and leave me feeling like a zombie. I suppose if I were older and had quit school rather than continue my education, I would have been on disability months, maybe even a year ago. I mentioned earlier it has felt that many doors have been shut in our face, and sometimes we wonder if anyone will ever do the right thing. In spite of all this worry, extreme stress and frustration, we continue to rock along and be thankful for what we have… and try to be patient as difficult as it is. We know that it could always be worse, and are grateful that it isn’t.
Epilepsy has drastically changed my life. Epilepsy has changed ALL of our lives, forever. You have probably noticed that I have used “We” more than “I” in this story. My family has been amazing, but unfortunately it has also taken its toll on them as well. There is a constant fear in all of us of, “when will the next one be?” Thoughts of SUDEP worry us. The danger of me getting hurt is a constant fear and source of anxiety. Both of my parents are almost 70 years old. And even my daughter knows when I get “the look” to begin yelling for help. Therefore, there is a lot of guilt on my part associated with that. We have to laugh as often as we possibly can because otherwise we would be crying ALL of the time. I know I am saying WE a lot in this, but this has truly been a WE experience. My family has gone through everything with me, the good, the bad, and the ugly. I truly do not know what I would do, or where I would be without them.
Epilepsy is not only a medical condition, it is a loss. It is a loss of how things used to be. It is a loss of independence. It tells YOU how you are going to do things, and then you watch the look on your daughter, your sister, and your parents’ faces change once it has hit you. But you have great days, and not so great days, and try not to take those for granted.
One of the first and most important steps that helped me begin to accept and deal with the fact that I had epilepsy was going to the National Epilepsy walk in Washington D.C. My sister is truly my very best friend, and she pushed me until she got me to do what she felt was in my best interest. It was an amazing and life changing experience. I can’t even remember the name of the lady speaking, or the year we went, but I can tell you she had red curly hair, and it was very cold and windy outside, and it was like she was speaking directly to me. She talked – no, she demanded – that those with epilepsy shall not feel ashamed, guilty, or scared. I remember feeling a single tear run down my face. How could someone else know how I felt?
The next gift came from more research by my sister. She is always trying to get me out of the house, as I have become quite the hermit. She came across an art therapy group sponsored by the Epilepsy Foundation of Georgia called Studio E. I declined to participate the first time she offered to take me. But the next time it came around, I decided to go. It was the best thing I could have ever done. The first few sessions, it was hard for me to really open up. I found myself either being shy or untrusting. I had just been through so much with work, I no longer knew how to trust anymore, and I was a complete bucket of nerves. But after a few sessions, this idea came to me for a painting and that was the one piece I worked on for the remaining session. I feel like it really helped me express what was going on inside me. And to hear the other group members express what was going on with them was just amazing. Studio E is a powerful program, and I am so grateful that it is provided! There is a desperate need for a similar program for children whose parents have epilepsy. There is support for children with epilepsy, but none for the kids who struggle with the stress of having an epileptic parent. My daughter suffers greatly because of my epilepsy, yet there are no resources that I can afford to help her. She really wishes there was art therapy for her too.
The most important thing that I would like for people to understand about epilepsy is that there is more than one type of seizure. I did not know that until I experienced it myself. Actually, it is my understanding that there over thirty, and doctors are still trying to learn about them more and more each day. How one person responds to a seizure may not look anything like how another person looks. During my journey, I have experienced a lot of judgment because my seizures have looked “different” than others. My epileptic seizures are very specific, but my pseudo or “stress seizures” can fluctuate. It also depends on what the person’s trigger for a seizure is.
Throughout the 8 years of my journey I have had many ups and downs, and it has definitely seemed like more downs than ups; but the constants that have remained in my life have been so much more precious. It is so true that you learn who your TRUE friends are when life gets you down. Well, I can tell you that I have a small handful that have really been there for me, and I consider them more like family than friends. I thank God for all of those that have stayed in my life, and not only stayed but stood up for me in those times. I am actually a truly blessed person and have so much to be thankful for.
Although the last 2 years have been a rough patch, we are all praying that things will work out sooner than later. We will also continue to be thankful for what we do have. As my precious daughter has said to me many times …”Never give up Mama”.