My story doesn’t start with epilepsy. It starts with a brain tumour. I was diagnosed in August 2020 with a brain tumour located in my pineal gland. This location is particularly tricky because
it is in the centre of the brain but, a week later, I had undergone surgery. I was operated on through the back of my head for eleven hours and eventually, most of the calcified tumour had been removed with only a small portion remaining. When I woke up from surgery, I was asked if I could tell the doctor how many fingers he was holding up. I let him know that I couldn’t because my eyes were closed. He replied that my eyes were open and to tell him how many fingers he was showing me. I felt confused as I kept opening and closing my eyes but it looked the same. I realized that my eyesight was gone. After four days of being unable to see, I was told that I had experienced a stroke during surgery in my occipital lobe which is the part of the brain that manages the eyes.

I also wasn’t given an answer as to whether I was going to regain my eyesight or not.

As the weeks passed, I slowly regained some of my visual field but I would also experience flashing neon lights in the left periphery of both eyes. This went unexplained until many months
later when I was told it was migraine auras. Eleven months after surgery, I had regained a good portion of my eyesight which was a really positive outcome. I was still experiencing these migraines almost daily but they had changed from neon lights to sparkling and twinkling flashes. In July 2021, I was sitting at my desk in the office where I worked and I started experiencing one of these migraine auras. This one was different though. It lasted much longer, and eventually my visual field was almost fully obstructed. I suddenly had racing thoughts that I couldn’t quite grasp and a sudden heat rushed through me. I felt nauseous and started panicking. The next thing I remember was waking up on the floor with paramedics around me. I was confused and very disoriented. This was my first tonic-clonic, or grand-mal, seizure. After meeting with doctors, it was discovered that I had epilepsy stemming from the scar tissue where I had the stroke during my brain surgery. And the migraine auras were in fact focal seizures causing a visual disturbance when they occurred in my occipital lobe. The grand mal seizure was caused by the irregular brain activity in my occipital lobe travelling to the rest of the brain.

Receiving this diagnosis was very difficult. It had been tough being diagnosed with a brain tumour, having a stroke and then losing my eyesight which left me with permanent blind spots. After I was diagnosed with epilepsy, I wasn’t allowed to drive anymore (I had just gotten my driver’s license back because I was no longer legally blind), I couldn’t swim alone, I was even scared to walk on a busy street for fear of having another seizure and getting hurt. Then began my years’ long trial of medications to find the perfect mix of eliminating the seizures while having the least amount of side effects. I also decided to take part in a two week hospital stay to monitor my seizures through an EEG and this confirmed that the focal seizures were in fact epileptic activity.

It has been almost three years since I had my first tonic-clonic Seizure. I still think about it all the time and I can feel the physical reaction in my body as I experienced each step of the seizure progress. I have had several tonic-clonic seizures and many focal seizures since. It is always the same progression so I know what is coming as it is happening. This is lucky as I can prepare myself but at the same time, it can be extremely scary knowing what I am about to go through and to have to experience this another time.

My experience with epilepsy and my visual impairment has been extremely eye opening (no pun intended) to the reality of living with a disability. The fear that this could reoccur at any moment is a heavy burden to carry around. But it has also given me a different perspective. I am now moving forward with my life living with a disability, something I have never experienced before. An invisible disability for the most part. I have had to learn to navigate this new reality and the hardships that come along with it. I will always have to take medications twice a day, I’m not sure if I will be able to drive again and I have to make sure to pace myself in everything that I do in order to not get too stressed or tired which can trigger a seizure.

Today, I am trying to move forward with this diagnosis in as positive a way that I can. There are really hard days where I feel so tired from the medication that I can barely keep my eyes open
and where I dwell on the memories of experiencing seizures. But there are also days where I feel strong and proud of myself for the courage and perspective I have gained in going through a
traumatic life event. Undergoing brain surgery with a lasting life-changing outcome has had a fair share of negative impact on my life but I am trying to create positivity by sharing my story and my experience so others don’t feel alone in their journey. This process has been long, both physically and emotionally exhausting, but has allowed me to gain so much knowledge at the same time.

I have learned to be patient with myself as some days I feel stuck and unable to get anything done. There is a feeling of loss and grief when you get this diagnosis. Epilepsy will always be present and this changes everything. I like to remind myself of that when I am being judgemental of myself in periods of low productivity or when I need a lot of rest. I have had to learn to make peace with my pace as some days are more difficult than others. I am still working on this mindset but as time moves on, I feel as though I am taking steps in the right direction.

The Canadian Epilepsy Alliance/ Alliance Canadienne del’Epilepssie is a Canada-wide network of organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families. We achieve this through the provision of support services, information, education, and public awareness.

 

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