Rising Above Epilepsy: My Journey from Darkness to Hope - Part 1
My health isn’t something I frequently speak about on these platforms.
Not because it is something I am ashamed of, but rather a case of I want to make sure my health doesn't define me.
I have always had the opinion that we are more than our circumstances. At the age of 11 I experienced my first seizure. My family and I were on our way home from an agricultural show when I lost control of my body and began convulsing in the back of the car. At the time I didn't know exactly what was happening but my father had witnessed a seizure before, recognised what was going on.
From here I started to see a consultant in Crumlin Hospital and began my journey of trying to figure out firstly, what was going on and secondly, how to get back to the old me.
Within a matter of months, I had tried every available antiepileptic drug, none of which could control my seizures. As my epilepsy was non-responsive to medication this led to the snowball effect whereby at the age of 13 I was experiencing up to 40 grand mall or tonic-clonic seizures every day.
I had gone from a perfectly healthy 11-year-old to now being 13 and merely existing through a daily life of being relocated from the couch to the bed as my brain was caught in a loop of seizure activity that couldn't be controlled by my doctors at the time.
One evening I ended up in Kilkenny Hospital with an injury after falling down the stairs. That night my parents encountered a nurse in A&E that was familiar with my case and recommended I visit a specific epilepsy consultant located in James's hospital.
Within a matter of weeks, the appointment was set up and I visited doctor Colin Doherty. As I was entering his office a seizure began and he was able to witness firsthand the symptoms I was dealing with.
The doctor then pulled up my scans on the computer in front of him and just like that he was able to point out the mass in my brain that had been missed by previous doctors. In that moment my life moved from a spiral of darkness to a place of hope and optimism that there may in fact be an answer and an opportunity to regain my life and move back from existing to living once again.
Things proceeded pretty rapidly from here as the doctors could see the state of illness I was enduring. I proceeded to meet neurosurgeon Dr. Donnocha O'Brien who would be the one to undertake the surgery and remove the mass from my right frontal lobe.
I remember the night before surgery being so afraid, so scared that I might not wake up. So scared of the risks I was about to take but with the help of my mum I found the courage to undergo surgery and I am so glad I did as it changed my life in ways I never knew possible.
Although I did not gain complete seizure freedom from surgery I gained my life back.
Suddenly I could do things I couldn't before. I could shower on my own. I could go to the garden without somebody watching me. I could sleep in my bed in my own room. I regained my privacy. I regained my independence.
The seizures I was experiencing after surgery were nothing compared to what I had previously endured. I was now experiencing drop attacks, absent seizures, and nocturnal seizures during my sleep.
I understand this may seem like a lot to others, but in comparison to what I was experiencing before, this was a life I was more than happy to live.
I began to find myself again, return to school, rebuild friendships, and explore the world.
From the time of my first surgery, I continued treatment with my consultant in James's hospital.
We continued to explore new antiepileptic drugs and search for options that would improve my life further. After many years of trying different drugs and different treatments, it was clear that my epilepsy was unresponsive to medication. This is when I made the decision to come off medication and live my life with the hand I had been dealt and make the most of it in every way possible.
I began to curate a life I loved. I chose to focus on the positives and enjoy each day that was given to me.
In my next blog post, I will be explaining what that life looked like and how I learned to live with epilepsy. How I maintained a life I could not wait to wake up to each morning and how I refused to let my health determine my lifestyle.
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