(By Meghan Letourneau)
I am sitting up at the end of my bed in my small but quite comfortable apartment in Jeonju, South Korea. I stare at my wardrobe longingly. It’s already quite late. All I want to do is put my pajamas on and drift into a sound sleep. But what’s going on? Why can’t I just get up and grab the pajamas?
Suddenly, I hear the familiar sound of the code on my door being unlocked. Only Gaby in the apartment above knows that code. Sure enough, in she enters.
“Meghan,” she gasps, looking around at the toppled chair and my laptop on the floor, “What’s happened?!” I become suddenly aware of the searing pain in my right shoulder, the tears on my face and the screams coming from my mouth. “I don’t remember,” is the reply. I turn to face the source of the pain. My shoulder is hanging out of its socket, oh so casually.
“How come you’re here?” I ask, confused. “You just called me wailing, ” she responds. I have no recollection of the call.
Suddenly, as I come out of my state of confusion, it dawns on me about what just happened. All the signs were there: confusion, memory loss, the intense desire to simply go to bed and sleep, and the only explanation possible for the current state of my shoulder - I’d had another seizure.
With the help of a British co-worker next door, who knows a lot more Korean than both us, we are able to contact an ambulance and the next thing I know, I’m lying on a hospital bed, surrounded by five doctors and Gaby standing horrified at the end of the bed. They’ve wrapped blankets around my body on one side and another under my right armpit. “Relax,” is the only word I understand as the doctor standing by my limp shoulder counts down from three. A horrible yank and my shoulder is back in place. I’m sent home with a bill and a sling, ready to continue teaching English as normal the next day.
And life goes on.
Hi, my name is Meghan Letourneau. I’ve suffered from epilepsy – or rather, I’ve witnessed God’s amazing grace in a unique way – for the past 20 years. At the age of nine, I was diagnosed with absence seizures: a blank stare that would last for 2-5 seconds. I was treated with various medications that lowered the seizure length and frequency but never completely controlled them, as the doctors had hoped. I told them that I didn’t mind because they didn’t really affect my life too much; I did well in school and was otherwise healthy. The doctors told me that it was possible for these seizures to develop into bigger, more serious seizures. At the same time, I was reassured that most children grow out of their seizures by late adolescence. At one point during my teens, I was completely seizure-free for a whole year! The doctor said we could start lowering my dose of medication. I looked forward to the prospect of being able to get my driver’s license one day. However, the tables turned drastically almost the minute I started lowering the dosage; the seizures returned, and this time, I had the tonic-clonic seizures the doctors had forewarned about.
The first time it happened, I was with all of my extended family on my mother’s side. We were about to give thanks for the dinner ahead of us. My mother caught me as I fell unconscious. I was rushed to the hospital while my cousins cried, thinking I was dying. I “woke up” halfway to the hospital, asking for pizza.
Thus, it began the next stage in the medical quest to stop my seizures. At 18, I was transferred out as a patient at the Children’s Hospital in London, Ontario because you’re only a child for so long. Despite their specializations, there was still no real conclusion, and I continued to experiment with the different medications available.
By the grace and mercy of God, one of the best epilepsy clinics in the world was located just an hour from my doorstep at the University Hospital in London, Ontario. I was referred to go there, and I spent a week with EEG electrodes attached to my scalp, monitoring my brainwaves for signs of seizures.
The doctors concluded that I had focal (occurring in one part of the brain) tonic-clonic seizures and generalized (involving the whole brain) absence seizures. Brain surgery was not an option. There was the mention of Vagal Nerve Stimulation (VNS) surgery, a relatively new treatment where a battery is implanted just in front of the chest bone with a wire that connects to the vagal nerve situated in the neck between the jugular and carotid arteries. The battery would send an electric voltage to the brain through this nerve every five minutes for 30 seconds at a time. The purpose would be to regulate neuron flow in the brain and stop any seizure-causing traffic jams that might occur. That would really only help with the tonic-clonic seizures though. Also, the waiting list to have the surgery was around two years.
During university, I had an increasing amount of seizures. During one particular winter exam season, I underwent four plus tonic-clonic seizures in three weeks, while maintaining thirty to fifty absence seizures daily; although, it was really impossible to tell. They had become as common as breathing to me.
It took a turn for the worse that January 2012 when the side effect of the current medication I had been taking plunged me into a deep depression. I stopped my medicine cold-turkey. I wanted to commit suicide. I spent a day – my birthday – lying in a bed unresponsive to my parents and the rest of the world. Strangely, Philippians 1:21 ran repeatedly through my head: “To live is Christ.” My parents took me to the emergency unit at London University Hospital, where I was admitted for a week.
I told my parents, “If God can heal me, then what is the point of taking medicine? He’s in control anyways.” My mom wisely replied, “Yes, and he has provided these medicines to help you.” My doctor gave me a strict lecture about the dangers of SUDEP – Sudden Unexpected Death in Epilepsy Patients. Not taking my medications properly could contribute to that.
An unexpected blessing happened that week. I was greeted by Dr. MacDougall, a neurosurgeon, who announced to me that the same week I had arrived, the hospital had received extra funding for the VNS surgeries. It would still be a wait, but not near as long. This was my consult. I was sent back to the epilepsy clinic for another few days and told to be ready for the VNS surgery within a moment’s notice.
Amazingly, I received a call only a short month late and received the surgery that February. It didn’t take away the tonic-clonic seizures, but it lowered their rate significantly. Also, I was able to recuperate much more quickly. Before, when I had the seizures, I would be “out of it” for around a week, too tired to do anything. Many of my final exams in university were postponed/canceled for that reason. Now, with the tonic-clonic seizures, I can receive one, and continue on with the day basically as normal, but a little tired.
I slowed down the pace of university by taking fewer courses and tacking on an extra year. I give glory to God that I was able to complete my last university semester with straight A’s and not a single tonic-clonic seizure during the exam weeks (as had previously been the trend). It was a tremendous moment for me. A month after my graduation, I went to live and work, teaching ESL, in South Korea for two years (2013-2015).
In the epilepsy world, the ketogenic diet has been used for the past hundred years to reverse seizures in children. They have only begun looking at variations and research for adults with epilepsy. In November 2018, I was referred to the Krembil Health Neuroscience Centre’s adult epilepsy diet clinic to begin what’s known as the “Modified Atkins Diet”. I could eat twenty grams of carbs (sugar, fruits, grains, breads) per day. I was to eat a very high amount of fat. I was given a neurologist and dietician.
As I write this, I’m in a sling, recovering from anterior shoulder stabilization surgery that I needed as a result from that shoulder-dislocating seizure I had in Korea. The shoulder kept popping out unexpectedly. I’m still testing out the MAD diet, but the seizures continue daily. In the past few years, it would seem I’ve also developed “myoclonic jerks” – another kind of seizure, that for me, manifests itself by having my arms or legs quickly jerk randomly. It has an uncanny ability to happen when I’m holding a cup of tea or water in the early mornings. My computer has been ruined due to a myoclonic jerk coffee spill all over it. My last two tonic-clonic seizures both took place when my fiancé came to visit. The most recent one was in November 2018, the day after Carlos came and proposed to me. We spent that day in the hospital together, as I had fallen flat on my face, almost breaking my nose. “Too much excitement,” concluded my mother.
As I retrace my steps throughout my illness, I look back, and I see that there are so many things I can be thankful for. Out of my entire two years in Korea, I only had that one big seizure, and Gaby was a God-send for me. I came home and secured a job teaching ESL online to Chinese children and as well as at Lambton College. I live a ten-minute walk from the college, and as someone without a license, these jobs are ideal for me. I spent three and a half months traveling around Mexico alone in the summer of 2017. My shoulder popped out once during that time when we were an hour away from the nearest hospital, but thankfully, it popped right back in all by itself a few seconds later. I met my fiancé in Mexico, who just happens to be studying medicine – a convenient career for a medically unstable partner like me. I look forward to moving to be there with him soon.
During my times in the hospital, I was given a purple (the color of epilepsy) quilt handmade by some of the sisters from the Sarnia Gospel Hall and commissioned by the late Ann Kember. It was so touching. I also clearly remember being struck with the amount of love that my parents had for me. Of course, I knew they loved me, but God had used this moment to unlock part of their deep love for me in a way that resonated more loudly with me than ever before. Another one of the many blessings from my Father.
There is nothing quite like the love of true Christians towards other Christians. It’s something I experienced strongly in Korea, and I am witnessing it a lot on my epilepsy journey as well. I’ve seen Christ’s love come “out of the woodwork” during the hard times. There’s always someone ready to support me in whichever way possible, whether through food, rides, prayer or just a small word of encouragement, I am never in short supply of Christian love.
One morning, I woke up very early to make cinnamon rolls for my students at the college. It was their last class, and I wanted to do something special. I had just started baking, but I woke up on the hard tile floor of the kitchen wondering why in the world I would ever want to nap there. Another seizure. I had to wake up my grandmother to help me finish making the rolls because I would read the instruction and would forget what it was two seconds later. I physically was not able to process at that moment. I burst into tears, crying out to God, and then asked Grandma through the tears as the scary realization hit me: “Why should I ask God for these seizures to go away, when every time I have one, it brings me closer to Him? Which is more important: my physical health or my spiritual health?” It is still a strange dilemma in my life. Whenever I choose to question God, “He [says] to me, 'My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me” (2 Corinthians 12:9, ESV). His grace is sufficient for me.