We are here today to share our experiences with epilepsy. We are all on our own journey that is in part influenced by how epilepsy has affected us. My first seizure experience was when I was about 5 years old, my dad was walking us back from school, our home was 100 feet away. Suddenly my dad was on the floor having a seizure. Early on, I had to be caregiver for my dad, as I got older my duties increased. My dad had many seizures but I am happy to say he hasn’t had another tonic-clonic seizure for over 5 years.
I remember wanting to grow up to find the cure of epilepsy, but nursing seemed easier…lol. As a teen I would pass out a lot with no answers and on top of that was diagnosed with Hashimoto’s hypothyroid (slows down my metabolism, always feel cold, depression, hard to loose weight.)
Looking back, I did have anxiety. I graduated nursing in 2011, while still providing first aid for my dad- seeing him loose jobs, with not getting proper financial help.
My first seizure (clonic – tonic) was in 2016/2017, then several more, while I worked multiple jobs as a RN. Then I had a seizure the day after my brothers’ wedding, I had a lot of stress as a full time manager at the hospital, covid, and teaching. My triggers are lack of sleep, stress and anxiety.
Living with epilepsy is so scary, I have anxious thoughts that turn to panic attacks, fear of having another seizure, not wanting to be alone, losing my drivers license, losing independence, my nursing career, would I ever find a partner who would love me with all I carried, would I ever have kids and keep them safe. As an RN, where do I fit with Epilepsy, who would want to hire me and give me accommodations.
In 2018 my brother had his first seizure, then when he got covid, then on the dance floor of his wedding this April. My baby brother, I love him so much but I know he is going to be taken care of by his wife which gives me peace.
My poor mom, my strong, courageous mom. My mom, now working almost 30 years in the same job, has supported us and I am truly thankful.
A few years ago my dad was able to get a doctor to help him with the right medications and when cannabis became legal, my dad tried it, and he has been seizure free since then!
It took me about 3 months to recover from my last seizure. But my husband supports me so patiently, lovingly, rationally. My family supports me, and my job supports me. Since this last seizure I have been able to switch medications without panic attacks, cannabis, get on temporary sleeping pills and anxiety pills. I finally went on daily anxiety pills which has helped so much, I wish I would have started earlier!!
My coping mechanisms are: prayer, my husband, painting, spending time with my dog, church, family, friends, nature, walking, crocheting, knitting, therapy, support group zoom meetings, medications, learning to rest and not have to be hustling every day.
I know everyone has a different experience, but just know you can talk to someone and you will get some help. I’m learning to take it slower, learning to depend on others and enjoy the peaceful times and when the storm gets rough I try to ride the waves.
But it is important to know, that no matter where we started with this journey, the other part is how we grow from this.
We had a very informative meeting provided by ESWO with my whole family so we are all on the same page when it comes to living with Epilepsy. From there I have been able to go to support meetings and connected with a peer-to-peer support.
The more I speak to people about living with Epilepsy, the more common I find it is, which is why, as Windsorites, we need to support events like Seize the Day – to ensure ESWO can continue to help families living with epilepsy…just like mine.
Hi everyone! My name is Cooper Sanchez-Skellett. I’m a twenty-two-year-old student at the University of Western Ontario. When I was fifteen years old, I was diagnosed with epilepsy. It was a life-changing ordeal, but thanks to the love and support of my family and friends I was able to adapt and live with my condition. I was lucky to have a great support system, but I was also able to utilize services from ESWO to help me understand and support others with epilepsy.
Great people work for Epilepsy Southwestern Ontario, and I have been lucky to learn and work with these individuals. From their informative lectures and presentations on epilepsy to the amazing Summer Kids Camp for children with epilepsy, ESWO does amazing work for people living with epilepsy. Over the summer, I volunteered for the ESWO Kids Camp, and it was a tremendous experience. There are amazing people who dedicate their time and hard work to help people like myself, understand that I am not alone in my journey with epilepsy.
I would like to thank Epilepsy Southwestern Ontario for all their hard work organizing the Seize The Day walk. I appreciate them allowing me to speak here today. Lastly, thank you to everyone who came out today, it truly means a lot to see all the supporters of this cause. Thanks so much!