In which personal stories are shared, describing life with epilepsy, recognizing, experiencing and overcoming challenges.
A successful operation changed my life forever.
I had a difficult birth which caused me to have epilepsy. July 1987 was when my life took a turn for the better. I was working at IPSCO from August 1977 to July 1987 when my epilepsy seizures became worse than when I started at IPSCO. In July 1987 I was working at IPSCO Steel Stores when I was put on long-term disability. I tried several new medications but nothing would control my complex partial epilepsy seizures after nine months of trying different medications. My neurologist, Dr. F. Veloso told me I had exhausted all the medications that could control my seizures.
As a last resort, I was sent to Royal University Hospital in Saskatoon to talk to Dr. M. B. M. Sundaram, a neurologist that Dr. Veloso referred me to in April 1988. In April my family and I talked to the neurologist to see if I was a candidate for surgery. In June 1988, I went back to Royal University Hospital for about a week where they weaned me off medications and watched to see what type of seizure I was having and what I was saying. The information was gathered in about four days. I was put back on my medications and went home after a week. My neurologist said in my case Dilantin and Tegretol were attacking each other inside of me.
It would be the equivalent of not taking either medication at all. I discontinued the Tegretol and kept on taking Primidone and Dilantin. In August 1988 I went back up to Royal University Hospital and had a “wada” test. It is a dye that is injected into the groin and travels up to the brain and highlights the troubled area. The scar tissue which was causing the seizure was in the right temporal lobe. The speech box is 99.9% of the time located in the left temporal lobe. I would be unconscious through an epilepsy operation. I was told the scar tissue was in a good place to be taken out. I was told that there was an 85% chance of being seizure-free. Dr. Robert Griebel was the neurosurgeon who performed the surgery on November 28, 1988. I went back to work in May 1989. I retired after 40 years on August 31, 2017, working at EVRAZ, formerly IPSCO. I also obtained my driver's license.
I celebrated thirty-one years of being seizure-free November 28, 2019. - Dale Oram
At the age of six months, I developed a high fever and was taken to the same local hospital . I became hospitalized, supervised by staff, especially the head nurse who made sure I was well looked after. After four days in the hospital, my fever broke, and I was better. It was not long after, I was diagnosed with frontal temporal lobe epilepsy, complex partial seizures. My fever caused the condition.
I had to start taking anticonvulsants to control my epilepsy. As a young child, I did not pay attention to the detail as much as my parents had to ensure my health was looked after. I recall Phenobarbital as being one of the first medications I was on.
In public school, Grade 4, math and spelling were my top subjects. Every time we had a spelling test and all words were spelt correctly, you would receive a gold star by your name on a chart taped to the wall. I was top notch. I recall one spelling test where I was fine at the beginning of the test. During the test, I had a seizure, my writing got messier, bigger, and words possibly spelt wrong or missed. I was sad that I did not get the gold star beside my name, the first one I missed in Grade 4. My teacher asked my mother what the problem was, she explained it was epilepsy.
I was held back from swimming lessons. I got to play in the Wading Pool. While in the pool I had a seizure. My mother carried me out of the water, mom was soaked. Dad owned land with a dam. Older farm boys, neighbors of ours, always wanted to go swimming there. We could tag along if supervised. I took a tire tube to float on. The tube flipped in the water, my feet landed below with water above my head. I walked out and could see my shadow through the water, okay though.
In junior high and especially High School in the next town, other students learned about my condition and some commented to me, “When are you going to have a Fit next”? I felt alone, no friends. I became involved in softball, curled and entered local 4-H. In my first 4-H class I sewed an apron; I entered and displayed it at the fair in the local city. When I went to view the apron, it had a red ribbon attached. I won first place amongst other communities in that level !
Saskatchewan Government Insurance orders are not to obtain a license if you have epilepsy seizures. Though living on a farm I did learn quickly. I still had seizures monthly.
Due to teasing in school, including Grade 12 (where I ended up short one Credit), I decided not to go through the Graduation process. My parents backed my choice. I still received graduation gifts from relatives and neighbors for completing Grade 12. The gift I received from my parents would be the same as what I would receive if I went through the Graduation process.
By this time I changed my medications to Mysoline and Dilantin. My family convinced me I could work. Seeing others with other medical problems worse off than me, gave me more self-esteem. I took classes and received a Wood River Home Care pin. I worked various jobs for nine years assisting those with other conditions; elderly, ALS, MS, Polio, Rheumatoid Arthritis and paralysis patients, etc. These jobs were limited as their health conditions became worse and clients had to be moved. (Ironically one of these clients was the parent of the Head Nurse who watched over me when I had the high fever at 6 months old. Another patient was the mother of the lady who instructed my Home Care course).
At this point, I decided to move to Regina. I could not drive and all amenities were there. I still had complex partial seizures but did not let them get in my way wanting to work. My seizures usually occurred around a monthly cycle for women. I applied to attend and took Micro Computer Business Applications. I completed CompuCollege course and Graduated. I later contacted the Saskatchewan Department of Education and studied a science to receive a credit to finalize my Grade 12. Last but not least, I took it upon myself to sign up at the YWCA and took Adult Swimming, passing the class. Missions were accomplished. I felt proud. Now I needed employment, my sister convinced me I was capable.
I was advised an Epilepsy Organization existed in Regina. I contacted them and found out they held support group meetings monthly; I thought to attend and listen in. At the first support meeting I attended, I listened and met others with epilepsy. Seizures did occur at the meeting. Before I walked home, the Executive Director asked me, “Are you coming back?” I responded, “I don’t know”. During a seizure, I would gape, pick at my clothes, or lip smack. I did not lose consciousness or fall; I could see everyone but not speak properly. A lady stopped me walking on the street when she saw something was wrong. She tried to assist me. I could feel myself holding back from hitting her during my seizure. Another time, I was about to cross a busy street. Just as the light turned green to walk, I was going into a seizure. My conscience told me not to walk. I stayed on the same corner until I was okay.
I went to Canada Manpower looking for work. Nothing suited my degree. A couple of weeks down the road, Canada Manpower contacted a Lawyer looking for an office clerk. I was called for an interview, it lasted two hours. A day later I had a full-time job. The lawyer was not concerned about me having epilepsy at work. He had a good understanding of the condition. My job lasted only nine months as the lawyer moved to another city. After losing employment with the lawyer, he and his wife still maintain a friendship with me to this day. They have also become important contacts, helping Epilepsy Regina before it closed and now assisting Saskatchewan Epilepsy Inc. as Board Members.
I continued to attend Epilepsy Regina support group meetings. Word of Operations for epilepsy was emerging. An Operation was not suggested to me. I would be tired after a seizure, a side effect from a medication. I was lucky and obtained a six-month term job with full-time hours.
By this time I met a member who was going to travel to Saskatoon for an epilepsy operation. We became close. It can be a scary thought but members from the organization were travelling to cities and obtaining successful operations. Doctors are recommending operations to this day.
After my six-month job ended I would hang out around the Epilepsy Regina office for coffee. I started to help with running bingos. I worked for Epilepsy Regina, under a government grant given to charities to assist with operating costs. The grant would not last forever.
Members with epilepsy would come and go to the office. You would hear happenings. Some members found full-time jobs. One member boiled a poked egg and had a seizure. She put the boiled egg in the fridge with a Band-Aid on it. She later had a seizure while showering and passed away. Another member was approximately 250 pounds, who had grand mal seizures. While standing in the hallway he had a seizure, I was behind him. I tried to hold on to him and help him slide down the wall easily to the floor. A university student had to hand in a prepared Thesis. The night before it was due, the student had a seizure then could not find her Thesis after. She re-wrote her Thesis to hand in the next day. The original Thesis was later found in the deep freeze at home.
A local job fair was being held for people with disabilities. Various businesses had information tables. There was one table in particular; they said their company was having informational interviews. I signed my name and was told I would be called. The phone never rang. I walked to the company to see if the informational interview could be held. An appointment was made and an interview held. The Staffing and Selection representative found out she knew a person from my high school, who she could reach out to and ask about me. In less than a week while working bingo I received a phone call from the Staffing and Selection representative, “Will you take up a three-week job?” I said yes. I told the company ahead of work I had epilepsy and explained my seizures. I had auras, enough time to secure myself from danger before a complex partial would occur.
In 2004 Epilepsy Regina had to close its doors. The founder had passed away also. Members were sad to see it close. I was one of a few Co-Founders who helped start Saskatchewan Epilepsy Inc. in 2005, with more services and a strong board. All on a volunteer basis, people emerged wanting to help. Especially those who have had successful epilepsy treatments.
During an airplane ride, was in the middle seat. I got up, did a 180-degree turn to put my jacket on. I missed the first sleeve, going into a seizure. Next thing I knew I was sitting down not knowing what happened. My partner to my right told me he grabbed the sleeve of the jacket; I reacted by punching him three times in the jaw. I was told ten times to believe it. It is like turning the television off for half a minute not knowing what occurred.
Over the years I was and still am to this day seeing the same Neurologist. By now I have changed to three other anticonvulsant medications to control my seizures. Every epilepsy case has to be diagnosed and treated in its own manner. I am not tired but more alert on my current medications, happier.
I have had a few seizures that made me trip while curling, or stumble on a sidewalk hitting my head. Once the skin broke open and I had to have stitches in the hospital. My head was wrapped up like a Band-Aid, around the top of the head and below the chin. After two days I was out of the hospital.
After leaving high school forty years ago, I received a much-unexpected letter from a student in my high school class for teasing me at school. It was an apology, apology gracefully accepted. Those years were behind me.
I had worked at the same company to this day, 29 years. During those years I obtained my Certificate in Business Administration from the University of Regina, graduating in 2004. I have fought to maintain my job showing determination and willingness to work. Employment Equity must be 5% of the workforce now. It is said that those with a disability tend to work harder and have less sick days to prove they are capable of working.
I am now retired and enjoying it. Quote is “you are a person, with epilepsy second.” Epilepsy doesn't have to stop you from enjoying your life and wishing to find success. You can succeed in many areas by believing in yourself. Support is out there.
- Darlene Achter
Why the "HUSH HUSH"?
At one time, some of us were never sure what, or if, we should tell people about our epilepsy. When growing up, I was told that ‘we don’t need to tell people that we have epilepsy’ (a fear of the unknown). This made it difficult if friends asked why I took the pills that I took. And if they did ask what epilepsy was, I didn’t know how to answer, as it was something we never talked about. I didn’t have a clue what the pills and epilepsy were all about. I often heard things about people having arthritis or diabetes, but epilepsy was one of those things you just didn’t talk about.
Here are a couple of things that I experienced as I was beginning to realize that it actually felt better if I wasn’t afraid to talk about it.
I spent my childhood not talking about epilepsy, as it was something that I was told that I was not to discuss with other people. The few people that knew I had epilepsy would never ask any questions about it.
When I had a couple of seizures at work, some people would question what happened, but when told that it was epilepsy, the conversation was dropped. Until one day, Marjorie, one of my co-workers began asking me about it in the lunchroom. Her daughter, Leigha, had had a couple of seizures and Marjorie was asking for any information that she could get. I guess that she felt that I would be the logical person to ask. I was surprised and a little shocked at first that anyone would ask, but found that I was more than happy to answer any questions that Marjorie had and told her about the feelings that came with the seizures. After the conversation, I walked away feeling better, just because I had found someone whom I could talk to without making them feel uncomfortable. However, Marjorie approached me later that day to apologize. She said that the other ladies in the lunchroom told her that if someone has epilepsy, they should not be asked about it. They were sure that Marjorie had been rude asking questions and had embarrassed me. When I heard this, I was shocked. I knew that it felt better to have someone that would listen to me and give me support. In fact, it was a breath of fresh air and a relief to know that I didn’t lose friends when I told them I had epilepsy. Marjorie and her daughter, Leigha, became two very good friends of mine!
I was 46 years old. I had had epilepsy for as long as my mind could reach back, and had taken more kinds of medications than I could remember.
It had reached the point where my neurologist felt that there were no other medications that he could prescribe and that surgery was the only thing that might help. After much worry and fretting and debating with myself about the idea, and what MIGHT happen if I had surgery, I decided to go ahead with it. I was sooo happy when I came out of it with my memory intact!
Just one month later I went to a family reunion, where I seemed to be the star of the show because of the success of my surgery. But I had promised myself that there was one cousin in particular whom I needed to speak to. He too has epilepsy. I could remember that as children we had never been encouraged to talk about the ‘problem’, but this time I wanted to ask Dennis if he still had epilepsy and if it was under control. The surprise came when HE approached ME and said ‘I WANT TO TALK TO YOU, TOO!’ I quickly replied ‘WELL, I WANT TO TALK TO YOU, TOO!!’. That evening we had a long conversation about things that had happened in the past. Even other cousins sat in on the conversation and listened.
But I had one thing up my sleeve to surprise Dennis. I keep family records and genealogical facts and at every reunion have a ‘Family Facts Quiz’. This time, one of my questions for the group was ‘How many people in this family have epilepsy?’ I was surprised to hear a lot of voices calling back ‘one’ and ‘Just you, Paula’. It shocked a lot of people when I answered that Dennis also has epilepsy. But looking at Dennis, I could see a strange look on his face and wondered if I had made a mistake by putting in this question ... letting others know about his ‘secret’. Once done with the quiz, I immediately sat down with him to ask if I shouldn’t have mentioned that he too had epilepsy. Close to tears, Dennis said ‘No, of course not! Wrong!! It feels so good to know that we don’t have to hide it from anyone’.
I have been seizure-free since 2006 and always look forward to more reunions and connecting again with Dennis. Long talks are awesome!
Thanks, Dennis and also a special thanks to Dale and Darlene, the people who were the ones who got Saskatchewan Epilepsy Inc. on its feet and were there for me when I needed someone to talk to.
- Paula Boyczuk-Green
My journey with Epilepsy.
Although I didn’t know until I reached my 20s, my journey with epilepsy began when I was 18 months old. I had an extreme fever that caused a seizure, and since I was still so young, it damaged a portion of my developing brain. When I was that young, we didn’t see any signs that it had any long-term effects, and I grew up not even knowing that such a strange thing had ever happened. The feelings I was used to when I was growing up were normal for me, so I assumed everyone felt the way I did.
I would have occasional moments of panic and feel like my body was frozen but it would go away quickly, I thought that was what deja vu meant! Since I come from a family with a history of Ehlers Danlos Syndrome, I would sometimes have dislocations, sometimes fall and shake, so that also made my small seizures easy to miss. As far as my small town knew, I was just an awkward, uncoordinated tomboy who dislocated things and really liked singing.
When I graduated from my small town I went on to study music at Brandon University. While there, I enjoyed taking on projects of non-profit organizing, so I redirected my goals and was accepted to the Odette School of Business at the University of Windsor. I cheerfully settled in to work on my MBA while focusing on non-profit administration.
I had just finished a third of my classes, and started a work placement program, when I had a grand mal at my new job. Within a month I had another one, and was quickly sent to specialists who finally diagnosed my epilepsy. We spent 2 years trying different combinations of medications, but nothing seemed to manage my seizure types, so I was sent to London Health Sciences Centre for testing to see if a surgery might be a better option.
In Ontario, the telemetry experience was incredible. For the first time, I met other people who were as confused with their bodies as I was. They had memories like mine, and we could laugh about how seizures had put us in strange situations before, or cry about what scared us. That experience quickly showed me how important it would be for me to find a community like Saskatchewan Epilepsy Inc., so that I would have folks to find commonality with.
I also received good news from the Doctors. Since they could see all the seizures were occurring in one section of the brain tissue, they recommended a left temporal lobectomy. That kidney bean-shaped section of my brain had not fully grown, so having a brain surgery focused on that area could really help. It was a hard decision to make, we had to discuss potential side-effects like memory and vocabulary loss, but in the end, the support of my family made me certain that I was ready to take that risk and try it.
It took about a year and a half for me to fully heal. I had to work on speech therapy and building up my vocabulary, so I came home to Saskatchewan and settled in to work on speech therapy with Wascana Rehab’s day programming. I played a lot of scrabble, worked on things I enjoyed, and gradually started reading again. Even today, if I am tired or stressed I tend to forget a lot of words, so my friends and I play a lot of charades games. Two years later, I was able to move into a mid-management job, focused on project management as a career facilitator. While working there, it really opened my eyes to notice a lot of the invisible barriers that could hold people with health conditions and disabilities back from job opportunities that they are truly skilled for. Even though I moved on from that job long ago, it has opened my eyes to ways that traditional accessibility strategies may not be working, for unexpected reasons. I am grateful for that lesson, it has motivated me to work even harder on breaking down non-visible barriers for other folks in my community.
Unfortunately, my seizures did return after I had five years of very good health. Still, the long-term benefits that the surgery has given me have made the whole process totally worth it. Thus far, it appears that I will not be able to have a second surgery, but research is always expanding, so who knows where I will go from here. Now, I simply do not drive, I take medications to manage my condition, and I continue paying attention and consulting with my neurologist. Several times now I have had to switch medications because a drug will sometimes lose its effectiveness, which is another reason why I like to stay involved with Saskatchewan Epilepsy Inc.; conversations with our members help me keep up to date on new meds and research options, and it keeps me in contact with friends who are looking for solutions similar to my own.
My journey has opened my eyes to the far-reaching and troubling challenges that disabled folks face every day. Currently, one in five Canadians have a disability, and as our population ages, those numbers will increase. At the same time, I have come to realize that my health condition has taught me the most important lessons I have learned in my life. I have started finding ways to support health-focused projects, as a Patient and Family Advisor with Saskatchewan Health Authority, developing an epilepsy testing unit for Saskatchewan. I am proud of my identity as a disabled entrepreneur and community organizer, and I will always be a passionate advocate for our community.
- Carla Harris