Rebecca’s Story
Looking back I remember it was 1996 and I was in grade 6. I had always been a happy, fun loving and creative little girl. Life seemed pretty normal. I was an only child and lived on our family farm. I spent my days either outside with animals and horses or inside with books and art. At the age of 11, I started to seem a little more spacey than normal. My parents would catch me drifting off and I would have no recollection of what we had been talking about. I remember being frustrated at being asked why I wasn’t paying attention and one day as my mom was watching she noticed my eyes seemed to move up and off to the side. This was the first I remember my parents wondering if there wasn’t something more going on than just a young girl prone to daydreaming, with a short attention span. We had a book in the house that explained a lot of disorders and the symptoms that went along with them. I remember my mom flipping through it and finding Epilepsy. She read off the description and my parents were fairly certain that I should see a doctor to find out if this could be what was happening to me. The main thing that sticks out in my mind is the word seizure and how scared that word made me feel. I ran off to the bathroom, closed myself inside and just cried. My parents contacted my doctor and after some tests, EEG’s, MRI’s etc. sure enough, I was diagnosed with Epilepsy. At the time, I was having Petit Mal Seizures only (referred to as Absence Seizures today). My doctor suggested we not put me on any medication as I was young and may grow out of it. He told my parents that the side effects the medication could be as detrimental as the condition itself, so we would monitor my seizures and hope that they stopped in a year or so. I continued to have “absence” seizures daily. On a good day maybe 5-10 and a bad day as many as 40. At such a young age and not quite being able to grasp what this diagnosis really was or what was happening to me, I became ashamed and self conscious. We visited with my teacher and described the situation but at the time, seizure awareness was not pushed for in schools like it is today and so it was decided (mainly by me) that this would be my secret. Only my parents, teacher and best friend knew about my condition and she became fiercely protective of me and other children reacting to my “spacey” moments. I developed a code word for times when I had a seizure. If I knew it had happened or my parents noticed one, we would use that word to point it out. By grade 8, I had only included one other person in my secret, a boy who joined our school shortly after my diagnosis. He is now my husband. It became apparent to me that life from here on out would be a bit different for me. I was no longer free to run around as careless as before and what followed was a feeling of being smothered. I had to check in with everyone all the time and little things like bike rides and showers became a major safety concern. There was always something someone was worrying about.
It was 1998, the summer of grade 8. I had a busy summer that year with lots of travelling and a vacation to Europe with my aunt and grandparents. My aunt and I were scheduled to stay for only a week and my grandparents were staying for 2. The morning of our return flight I was in the bathroom getting ready to leave for the airport and the next thing I knew I was on my cousin’s couch with paramedics around and my aunt apologizing that she had to go, the plane would be leaving and with work she didn’t have the option to stay. My parents were on the phone and I had a short and confusing conversation with them in which I mainly noticed their panic. Someone reassured me that my grandparents would be here as soon as they could. They were a couple hours away at another cousins. The memory is very hazy, as are most of my memories these days. The next image I have in my mind is being in a Belgian hospital and my grandma sleeping in the corner of the room. I know I was there for a few days as they used an IV to administer an anti-convulsant and then wean me onto a medication for me to take home. It was a very strange experience as most of the nurses and doctors didn’t speak good English and it was hard for me to comprehend what was really going on. I just knew my head hurt like nothing I have ever experienced before. We had a hard time getting me home and my parents were back in Canada worried out of their minds. I ended up staying an extra 2 weeks and my grandfather had to take a separate flight home. I don’t believe anyone was ever reimbursed for the missed flight.
Once back in Canada, we wanted local doctors to follow up and see where we went from here. I started seeing a neurologist in Windsor at that time. This also coincided with the start of high school. This was a difficult time for me. I suffered anxiety and depression, partially due to my new situation and partially to medication. The only times that I really felt like me were in English and Art classes. I was lost in a sea of confusion, confusion after seizures, confusion about seizures and confusion about my future and who I was.
With all these new emotions I searched for an outlet to express myself and fell into my art and poetry. With Valproic Acid, my seizures stayed under control for the following 2 years. This did not however make me feel any less of a “freak”. The medication caused many side effects, some of which were depression and weight gain.
As a teenager, this destroyed my self confidence and the following years were very dark. I was however able to get my G1 and looked forward to the freedom of driving and being somewhat independant. Unfortunately, that would never come to fruition. The week before New Years Eve in 2001 I was looking at my medications and realized that I had missed a whole day’s worth of pills!! Wow, I thought! I haven’t had a seizure in so long! I must have grown out of it! I was so excited that I decided to stop my meds and not tell anyone so I could surprise them with the fact that I was now “cured”. One week later on New Years Eve, I went into a Grand Mal and then another. I remember the ambulance and I remember that my parents had been concerned because I had been eating an apple and they were worried I would choke on it during my seizure. I woke up in the hospital confused as usual, and very disappointed that I was in fact not “cured”. I spent the night in the Emerge and vaguely remember the sounds of the nurses celebrating at midnight.
The doctor came to my bedside after some blood work and asked if I had anything I would like to tell them. I said no. At this point I was scared of being found out. He proceeded to say “Well Rebecca, you have no anticonvulsants in your blood stream. Would you know how this happened?” I cried. Then I got in trouble. Although the lecture would be nothing compared to the fact that my seizures would never again be controlled.
My Tonic Clonic seizures are severe and I take days to recover. I have no real warning they are coming and they are quiet violent. Following the seizure the post ictal state lasts quite a while for me and I tend to not trust anyone and run off scared if I can. I spent the next decade seeing a Neurologist in London at University Hospital. We tried meds and more meds and when they didn’t work, we tried even more and different combinations. My seizures still came and so did the side effects. Weight gain, depression, hostility, anxiety, skin issues, memory loss, cognitive impairment, allergic reactions, weight loss, tremors, fatigue, headaches, migraines, eyesight impairment and many more.
Over the years the numbers of seizures fluctuated but ultimately in my early twenties I came to a time when Tonic Clonic seizures became a bi-weekly occurrence. This led to weekly clusters of them by my mid twenties.
The increase in seizure activity was likely, in part, due to fertility treatments that I was undergoing in hopes that my husband and I could start a family. After the number of seizures became too dangerous to risk and I had suffered 2 miscarriages, we decided that having children would be too dangerous for me and we would redesign our vision of what family would be for us. This is still something we struggle with today. Especially, as I watch the growing families of those around us. I have learned to be ok with the fact that this will never be “us” but it is one more thing that my Epilepsy took from me. At this point my neurologist decided we needed to try something new. I was admitted to the Epilepsy Unit at University Hospital for 7 days. They tracked my Absence Seizures daily and nightly and on day 5 recorded a Tonic Clonic seizure. This provided my doctor with enough information to show that I had 2 lesions in my brain that, working together, were the cause of my Epilepsy. Because of the risk vs reward factor, surgery was not an option. They then asked me if I had ever heard of a Vagal Nerve Stimulator. I had not. They proceeded to explain what it was and how it worked. Also admitting that they didn’t really know why it worked, but that when it did, it seemed to really help those who could not obtain seizure control through medications alone. I was convinced this was the answer for me so we booked surgery for my implant.
I went to the hospital for a day surgery in 2012 where they inserted my implant and provided me with the information and follow up appointments to move forward. I would still be taking my regular medications with no change but this would be added to my treatment plan. The surgery went well and healing was easy. It was a weird sensation to have this device in my chest and every 5 mins my voice would turn hoarse for about 30 seconds. We gave it some time to settle in and see how I made out with it. As far as seizure control it didn’t really seem to help. However, it made a world of difference to my quality of life and it took my recovery time from 72 hrs to 12-14hrs. I still have this implant today although after some years the beneficial effects started to wear off and today, I am not sure if it really does much for me anymore. Still the idea of being without it scares me in case it is helping me in ways I don’t notice.
I was now in my late 20’s and I was starting to notice changes in myself. Things that had been there but just a bit annoying before now seemed to suddenly become chronic. Mainly my memory. It was as though years of my life had been erased. My current neurologist recently explained to me that the uncontrolled seizures, he referred to as Refractory Epilepsy, had been damaging my hippocampus over the years. The Hippocampus is the part of the brain that stores your memories. This was the beginning of me noticing the effects caused by the many seizures I have lived through. I am still trying to figure out how to come to terms with this and have many days where I don’t remember a conversation from the morning in the evening. I apologize to all of those people that I unintentionally forget your names minutes after meeting you again and again. There is also another unusual memory effect in which I have memories that never happened. Things I can see in my minds eye and remember as clear as any other memory that never actually happened to me. For example I believed whole heartedly that I had been to an Elton John concert. My mom and husband had to convince me that this was not in fact true. I still argued the fact that it had to be true because I remember it. Although now I have come to accept these fabricated memories as a part of me and enjoy having a good laugh about them from time to time.
In 2015 my husband and I were living back on the family farm in the old farmhouse. I was at the top of the very steep and narrow staircase when a Tonic Clonic seizure began. I am lucky enough that my husband was close by to hear the sound I make when the air is expelled at the start of my seizures. I had always been told this sounds like “something out of a horror movie”. Unknown to me at this time, I would eventually hear this sound myself, although it would not be from me. The scare of what could have happened if Nick had not been nearby to hop the rail and grab me was enough to have us looking for a new home with only one floor. A couple months later we would move to town and into the home where we still live in today. At the time we did not know how much this change would benefit us in the years to come.
December 2015 would bring a whole new chapter to my life. On Dec 8th I awoke at 2 am to find my husband stumbling around the house and muttering, not making much sense at all as he searched through the medicine cabinet looking for aspirin. The man that I had always seen as somewhat stubborn, who never admitted he needed any help was trying to get the words out that he needed to go to the hospital for the first time I can remember. I called for my father who lived around the corner because I knew I needed to get him to the emergency room and FAST! As we waited for him to arrive it became evident to me that the only way to keep Nick from falling was to hold his arm and walk with him down the street in zig zag patterns, talking softly. Still making no sense I had no idea what could be happening to my husband! We were only 30, could this really be a heart attack?!
My father arrived so quickly and we were at the local emergency in minutes where they sent us to a room and tried to calm Nick, asking him to breathe in and out. After many hours of waiting, a doctor finally came in and said Nick needed a CT and MRI as soon as possible. We were transferred to the neighboring town where they rushed him in and out of multiple tests and at this point the doctors advised me that Nick had likely had a stroke. At only 30! No way, my Nick had always been a strong and healthy man, this couldn’t be, and it wasn’t. After a night in the hospital a group of doctors came in to speak with us and apologized. They said their findings showed Nick had been experiencing intermittent seizures and they had found a very large Stage 3-4 Cancerous Brain Tumour located across 3 of his lobes deep in the right side of his brain. I thought they must have made a mistake. The world stopped!
Nick and I were quickly transferred to a Windsor hospital and to my immense relief, they allowed me to ride along during the transfer so I could get to Windsor with Nick, considering I wasn’t able to drive myself. Once in Windsor we met with a neurosurgeon who would be preforming a brain biopsy as soon as possible. Nick was still suffering from violent intermittent seizures and we remained in Windsor until he was able to walk enough to return home with the doctor’s approval, a total of 10 days.
When the results arrived in January, the findings came back Cancerous and Inoperable. The surgeon apologized but said he believed the surgery to be too risky and unfortunately there was nothing he could do but transfer us to the London Regional Cancer Center in hopes that the neuro-oncologist could find a way to prolong life.
Of course, with the numerous seizures Nick suffered daily his license was pulled and we were left stranded with our only means of transportation being friends, family and cabs. Our little town does not have public transport.
A treatment plan was put into place as an attempt at remission and Nick and I packed up and moved to London. We would spend the next months going through rounds of radiation and chemotherapy. After Nick completed his initial treatments, it was determined that it was not effective, and we were sent home back into palliative care with a schedule for regular MRI’s to monitor Tumour progression. We tried our best to settle into what was to be our new normal. Unfortunately, seizure activity increased in numbers and severity and Nick was placed in the Epilepsy unit.
Initially, Nick’s seizures where not like mine. He did not lose consciousness and they were very painful. The cries he let out during a seizure were difficult to hear and he clawed at himself in pain. It was very strange for me to suddenly be a caregiver to someone who suffered from seizures as well. As things got worse and he got to the point where he was averaging 18-22 very painful episodes a day, we reached out farther to find help. Eventually after 3 years of fighting for his life we found the doctor that would save him.
Over the next year Nick would undergo 2 craniotomies and have the tumour successfully removed by Dr. Petrecca at The Neuro at McGill University in Montreal. Today he is cancer free and at the end of March he will be seizure free for 6 months. After the surgeries, his seizure patterns changed and he began to experience Tonic Clonic and Absence seizures similar to mine. He would follow much the same path as I had over the years. With stays at the Epilepsy Unit in London and medication changes and adjustments as well as side effects from the anticonvulsants. It has been a surreal experience to be on both sides of the story of Epilepsy as someone with the condition and as a caregiver.
I managed to go through the 5 years we battled this disease with only a handful of my own Tonic Clonic seizures. The entire journey has changed us in so many ways but I was left struggling. Even as I watched Nick improve, I remained stuck. I spent a whole extra year just existing. Sitting there hour after hour, just thinking and drinking a lot of coffee. Slowly, over time, that thinking became creating, at least in my head. It took time, a lot of time, and I tried many things to get myself up and going but ultimately, I just continued to exist, not live. It wasn’t until I returned to my writing and art with a pencil and sketch book that things started to improve. It was only the beginning and before I knew it, I had taken over the kitchen with paints and canvas and art supplies!
I now have a bit of a following. I have sold many of my art pieces and sets of greeting cards both online and at local markets. I am now sitting in my studio, Little Introvert Expressions, that my loving and healthy husband built for me, partially hoping to regain some room in the kitchen I am sure. I am surrounded by my art. Pieces framed and Canvases hung on every open space that the walls have to spare. Shelves of art supplies, easels and my old roll top desk give the room its ambience. This is a fresh beginning. I have fought a good fight to get back and here I am now, not just existing but truly living. In the end, art helped bring me back!
I still have regular absence seizures but for the first time since I was 16, I have been over a year with no Tonic Clonic episodes. This March I decided I wanted to put a voice to my life with Epilepsy through my art and poetry and have since started my current project “Seizing Pieces” on living with Epilepsy. It may take many months to complete but I hope that in time I will be able to bring some awareness, not only to Epilepsy as a seizure disorder but to all the misconceptions and unknowns that surround the condition itself. I find it all too common that people say things like “well you haven’t had a seizure and you look good so you must be ok” or “you seem normal so why can’t you hold a job” and then there are those who think Epilepsy is only Epilepsy at the moment of a seizure. These people often treat you as if bringing it up just means you are looking for pity or making excuses. It is hard to put on a phony smile to appease an ignorant person’s hurtful remarks. So, I turn to my art and my words and I put all the pain I can’t express out loud onto the papers and canvas and I hope that someday, somewhere, my experiences will help make a difference for someone who is struggling to express what their own life with Epilepsy is doing to them.
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