Everyone has a story to tell. The experiences of living with epilepsy can be so unique (e.g. the type of seizure, seizure triggers) yet so common (e.g. the journey to accepting a diagnosis, struggling with stigma).
Share Your Story features first-hand accounts from people with epilepsy and their loved ones. Throughout this series, we’ll see many of the unique and common ways people struggle and thrive with epilepsy.
Submissions are taken on an individual basis and can be published anonymously or with attributed authorship, depending on the author’s wishes. Submissions may be edited for clarity, grammar, etc.
Expand Lillian's Story SectionLillian's Story
What it Feels Like to Have a Seizure – by Lillian
Hello my name is Lillian and I have seizures. So, you kids who have the same problem, you are not alone. The seizures that I have are different types. Some are epileptic, some are not and some are not even seizures and they just felt like seizures. When I roar and smash – that’s not a seizure. Some of my seizures are triggered by being scared, well usually. Well, my seizures are going to go away, I hope. But the good thing is you can still have fun in many ways and the most important thing to know is that your family will always love you and that’s my story and it’s true.
Epilepsy South Eastern Ontario helped me by giving me some books about epilepsy and they came to my classroom and explained about seizures. I felt safer because the kids in my class and teachers knew what seizures were like and what to do.
Expand Joanna's Story SectionJoanna's Story
I was diagnosed with epilepsy in February of 2009, after two years of undefined episodes, which I now understand were a type of seizure, and two tonic clonic seizures. When I first received the diagnosis, I had difficulty understanding what had happened, what this meant, and what it would change about myself. This is because epilepsy is a condition that is not discussed by many.
I have been told by many over the years that I am ͞epileptic͟, or that the first thing they think about me is my diagnosis. Because of this, it took many years to become comfortable with sharing my diagnosis with others, out of fear of judgement or rejection. I now appreciate the fact that I do have epilepsy and that it has helped to shape my own identity; but I also know that one does not have to be defined solely by their condition.
Over the past 6 years, I made the decision to try a combination of medications, and eventually neurosurgeries. One thing I learned over this process was a need to care for myself and put my health as a priority.
Being involved in the Grade 5 “Thinking About Epilepsy” program, as well as acting as a peer mentor through the Epilepsy South Eastern Ontario has been a privilege. It is wonderful to be surrounded by those who understand and share an interest in seizures and seizure disorders, as well as sharing information with those around us.
When volunteering with the presentations that are conducted in Grade 5 classrooms, it has been delightful to see so many children opening their eyes to something that, in my opinion, everyone should know. It is valuable to be discussing the stigmas and misunderstandings that still exist about epilepsy.
It is so important to get the word out about this agency, as it will help to raise awareness not only about epilepsy, but also about the support and services they offer. The resources offered allow those in the community who have friends or family who have been diagnosed – or who have been personally affected – to learn more, meet those who have similar experiences, and much more. I wish I had known about the support and services that Epilepsy South Eastern Ontario offered throughout my journey with epilepsy, from diagnosis to surgery. Even though I had a great support system of friends and family, I know that having a connection with the organization would have made the transition easier. That is why it is so important to spread the word about epilepsy and Epilepsy South Eastern Ontario; otherwise, those who could benefit most from their services may not receive them.
Epilepsy does not define who I am, but after many medications and three surgeries, it has helped to shape the ways in which I interact with the world. I love the opportunity of being able to spread the word and support people around me.
Expand Pat's Story SectionPat's Story
Growing Up with Epilepsy
When I was three months old, I developed a very high fever, and the nurses of the Ramestein Germany Army Base, put me in an ice bath, instead of luke warm water. It is said that the shock to the brain caused the seizures, because it lowered my threshold. At 1 year of age I again had a generalized seizure, meaning it affected the entire brain, and lasted for a long period of time. The medical professionals diagnosed me as having “Status Epilepticus”, in which the brain is under constant electrical activity for more than 30 minutes. This condition can cause the patient to have airway circulation and respiratory problems later in life. Some patients are lucky enough to outgrow epilepsy, but for others it can be a lifelong challenge I was having an average of up to 15 seizures per week lasting an average of 3 – 5 minutes.
During my school years I had a very difficult social life, I was nervous to hang around with other people for fear of me having a seizure. Kids were always making fun of me, and calling me “SPAZ” because of the way that I acted during a seizure. I never really had one good friend, who I would hang out with. On August 16, 1984, I was a patient at C.H.E.O, I had my entire head shaven and was then wheeled into the operating room under the care of Dr. Ivan and his surgical team. My head was turned on a right angle, and the left side of my head was completely covered in iodine, and a question mark shaped incision was made. I had a left temporal lobectomy, and I then went 18 months seizure free. It was believed that the surgery had been a success. There were many school activities, which I could never take part in. I started changing for the worst in the academic areas, and because of this my grades began to fall. Memory, balance, shivers in the sides of my head and depression are the four side effects that bother me the most to this day.
While growing up, I was a nervous child that the seizures may happen at any time. At the age of 11, I was found to have difficulty with spacial reasoning, as well as moderate sensory impairment. My parents noticed that I was not performing as well in school since the previous year. In my younger years, I was having an average of 15 – 20 seizures per month and each was lasting about 5 minutes in length.
I could never take part in gym class, in fears of me falling and hitting my head, so what the teachers did was they had me take photos of activities for the school yearbook, so I could still earn credits in physical education.
During my high school years, I was getting very poor grades, mostly due to the fact that epilepsy plays a major role in memory and cognitive thinking areas of the brain. Because of that, I had to do my classes at a lower level than that of most of my other classmates. I was having problems remembering things from one minute to the next and was also having a very hard time understanding the work. While I was going through school, I was not able to take part in many school activities for fear of me hitting my head. In order for me to obtain my physical education credit, I took pictures for the school newspaper.
Well, it is now 1987 and all is going much better, I am now seizure free and everyone thought that my problems were over, only to be proven wrong.
When Mom first started getting ill, it was noticed by others that my attitude was taking a change for the worse. I again started to feel the auras of a seizure yet nothing was becoming of them. In 1987, Mom was admitted to the Ottawa Civic Hospital for breast cancer. When Mom passed away in 1988, I had a seizure at her wake, as well as the funeral
The following year, I again started having seizures on a regular basis, and on August 27, 1990, I again was admitted to hospital for surgery, this time it was the Montreal Neurological Hospital.
I have been diagnosed with Major Neurocognitive disorders, which is better known as dementia, and the early signs of Alzheimer’s. Some problems that many people endure are managing medications, and bill paying as well as remembering medical appointments. (Grohol, 2014) As a person gets older, the younger people look upon them as the leaders, and expect them to perform better than the younger people. But this is not always the case, as many of the older people age they lose much of their brain power, and they have to rely on the younger people for help.
I have had, and still do have, many steep hills to climb and quite often I’ll get half way up, then slide back down. Another big effect this has had on me is I am a single man and I am nervous and afraid of rejection when approaching women. As well epilepsy greatly affects your memory, and many patients claim to have a poor quality of life. Living with epilepsy is like having a wild storm in your life and you dock your ship and don’t want to venture too far out to sea, now with any luck, the storms of my life have subsided.
With that being said, I have now want to jump back into the ring, and give life a TKO.
Expand Michelle's Story SectionMichelle's Story
Fifteen years ago at the age of 14, I began having focal (simple and complex partial) seizures. At the time, I didn’t know that they were seizures; they were just strange, out-of-my-body experiences that had to do with words. Approximately eight years later, I started having tonic-clonic seizures – those are the “grand-mal” type that everyone thinks of when they hear the word seizure. It wasn’t until then that we knew that I was having different types of seizures all along.
With that, I was officially diagnosed as a person with epilepsy and began taking medication. Things went very well until three years ago when I became non-responsive to the prescription medication. I tried dozens of different types and none of them seemed to be absorbed. My seizures became more and more frequent; almost daily. I ended up having to leave work, losing my driver’s license, feeling like a full-time supported individual with no independence, and constantly exhausted and defeated. I no longer felt like myself with a major change in my personality. Though many things felt negative and upsetting, there were certainly positive sides to this. I found that this was something to research and to work on with extreme passion and to talk about with others in similar situations. I am glad to openly share my experiences in order to help others and to take away stigma related to epilepsy.
Given all of my experiences, medical history, and doctor findings, I ended up having surgery in December 2015. A neurosurgical team removed my brains dominant temporal lobe and hippocampus where most of my seizures tend to begin and I have not had any since then.
Through my entire experiences from time of diagnosis to surgery to today, Epilepsy South Eastern Ontario has been a tremendous help. They’ve been there to teach me things like the “non-doctor” terms; They’ve been in their office and in the hospital neurology clinic to meet for any help; They’ve responded quickly to social media; and they’ve made wonderful work and school presentations to explain epilepsy to those not familiar.
Being a person who actually benefits first hand from the funds raised for Epilepsy South Eastern Ontario, I can’t say enough just how amazing this organization is and how well the funds can help. I’m not sure how I would have dealt if I didn’t have the support that I did.
Expand Anonymous Story SectionAnonymous Story
One day I moved to Kingston in hopes for a job. Instead I ran into a lot of complications due to my epilepsy that I have had since I was born as a result of a birth defect. Throughout my life, I have had a difficult time obtaining services in the community where I lived.
When I finally moved to Kingston, I tried to find assistance from Epilepsy Ontario but found out they are not in Kingston. I did
some research and found Epilepsy Southeastern Ontario who has a very kind and helpful lady that works there. She has been a life saver for me through connecting me with the community at monthly epilepsy groups, agencies such as emergency food banks, and even Epileptologists at the hospital. She even keeps me from going crazy sometimes because she always seems to know just what to do or say to get me back on track.
I don’t really want to brag here but Epilepsy Southeastern Ontario has been like a life line for me ever since I came to Kingston. While most support companies have turned their backs to me, they have done more for me than most that have been paid twice as much as what they get paid here. I would strongly recommend that anyone moving to Kingston gets connected with Epilepsy Southeastern Ontario even if it’s just to hear them out.
Expand Gray's Story SectionGray's Story
Gray was born at 31 weeks gestation. She spent a month and half in the NICU at KGH, followed by 1 week on the pediatric unit. While in the NICU, Gray developed a condition called Necrotizing Enterocolitis which put her at high risk for Sepsis. After 14 days of no food, PICC lines, TPN, IV Fluids, X-rays and ultrasounds Gray seemed to be doing much better. We had finally discovered that the culprit of the NEC was a major allergy to Dairy Protein and Soy. Once Gray got home on special formula, we had a fantastic few months of thriving and hitting milestones.
Fast forward to 8 months old and we started to notice that Gray seemed to be “daydreaming” several times a day. We didn’t think much of it and brushed it off as typical baby behaviour. We started to get more concerned when we noticed that she was not easily brought out of these 30 second stares. Heading in to a doctors appointment at 10 months I had woken her up in the car seat and Gray started to roll her eyes and shake. Very much concerned our doctor sent her get an EEG which to our surprise showed that she was having several seizures within a 20-minute span. Many unnoticeable to the naked eye.
Gray has just recently got the official diagnosis of Focal Cortical Dysplasia. She is now on two high doses of medications but has at least 2 seizures a day still.
As we await the next steps in her treatment, we want to focus on raising awareness to those who are unfamiliar with Epilepsy. Being an advocate for those that don’t have a voice. Knowledge is power!
Gray is now currently 16 months old and is a happy happy baby! She has been a warrior since day one of her life and I look forward to seeing the mountains she will climb in life. With her family by her side, anything is possible!
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