Everyone has a journey. It’s an inevitable part of life. Some have different paths to take and obstacles to face along the way. Mine? Mine is called epilepsy.
Because of the amazing doctors and team at London Health Sciences Centre (LHSC) who believed they could find another path for me, I can now look ahead to a better day, a better year, a better future.
My story is one of sadness and uncertainty, happiness mixed with anxiety and, in the end—hope. The Epilepsy Monitoring Unit (EMU) at this hospital, along with the countless hours, discussions and decisions made by a vast team of medical staff, is the reason I can include that last word in that sentence: hope.
I was 19, had just graduated from high school and had moved away from home for the first time. It was my first week at university—a time meant for celebrating, having fun and feeling the excitement of starting something new. Instead, my first week of university turned into the complete opposite. There wasn’t a course to prepare me for this—no rewrites, no redos. It was a full sink-or-swim type of class, one I unknowingly signed up for.
I was with a friend the day I had a seizure for the first time and everything changed. Life is full of firsts, no matter who you are. But at some point, we all must take that first step on our journey, right? My step quickly led to a diagnosis of epilepsy—something I would have to battle for the rest of my life. But in every battle, there is usually only one final warrior.
I never imagined that more than 25 years after hearing the word “epilepsy,” I would be where I am today. If I were to talk about every hurdle, appointment, test, setback, change and question along the way, this wouldn’t just be a short story—it would be a novel. And every novel has that one chapter that makes the entire book worth reading. I’m so glad that chapter for me included LHSC.
I had been in the EMU about 23 years ago, where I stayed for two weeks, hooked up to an EEG machine the entire time, lying in a bed for 24 hours a day, seen by diligent and committed neurologists, doctors, specialists, resident medical students and nurses—all working to get answers. At the time, medical technology for managing epilepsy wasn’t as advanced as it is today. The primary options were medication or brain surgery. Unfortunately, doctors determined that I was not a candidate for surgery due to the location of my seizures. I left with a new medication, hoping it would help me manage my seizures and allow me to live without so many barriers.
For many years, those pills worked—until about 11 years ago, when they suddenly stopped. In my city, I bounced from doctor to doctor, trying different medications and undergoing countless tests. After a year of frustration, I was finally referred to a young neurologist who became my gateway to a better life.
As fate would have it, by complete chance—and a lot of luck—I got a neurologist who had also trained at LHSC. He believed my best option was to return to the EMU since the medical technology has advanced over the past two decades. The right team for me was there.
When I arrived at LHSC for my consultation, I heard the words I had hoped for: “You’re a candidate for our epilepsy program. We’ll call you when we have a bed available and we’ll figure out what’s going on with your epilepsy. We’re going to try and help you.” I still remember that last sentence to this day: “We’re going to try and help you.”
After another two weeks in the EMU—undergoing many of the same tests I had 23 years ago—doctors determined that my seizures were now occurring in multiple areas of my brain, causing complications and different seizure types. I was given three options: change my medication, undergo vagus nerve stimulation (VNS) surgery to help regulate my brain activity or return for more intense testing that could lead to me being approved for brain surgery. The choice was mine.
In the end, I chose a new medication along with VNS surgery.
My neurosurgeon, Dr. Keith MacDougall, and his team took on the task of my VNS surgery and I can’t thank them enough. He is committed to his profession, determined to offer his patients a better life and has a sense of humour I appreciate. All the qualities I wanted in a neurosurgeon, I found in Dr. MacDougall.
My journey to managing my seizures has improved thanks to the new medication and the VNS procedure this hospital offers. It was a turning point that led to hope.
My epilepsy and VNS are a work in progress—like many things in life. Every day, this device helps manage my epilepsy, improving my quality of life. Medical advancements don’t happen overnight. Progress takes time, funding, innovation and the dedication of those in medicine and research.
This hospital has helped me get to a point in my journey where I’m starting to feel better each day. I know new ideas are on the horizon in the world of epilepsy and LHSC will certainly be on the frontline of making them come to fruition.
I will never not have epilepsy. It has been woven into the fabric of my life since I was 19 and will remain with me until the end. But while I am on this journey, LHSC, the EMU, the doctors, the neurologists, my neurosurgeon and everyone involved have made it easier.
With grace, grit and an immense amount of gratitude, I can now say I’m on the road to better days ahead. I was pulled into a new chapter that day, many years ago, when I first heard that inevitable diagnosis. Many chapters have come and gone, but I finally got to read the best chapter of my book—and, man, was it a good read!
Thank you, LHSC and to all the amazing staff, for cheering me on as I fought this battle. I went in a rookie and came out a warrior.
With gratitude,
Lisa Stanley