'My seizures were so unpredictable I spent a decade unable to lock a door. A shower or just making a cup of tea had become risks'
Diagnosed with epilepsy at just 14 years of age, Jenny McEntegart (33) has gone from 25 seizures a day to virtually none following vital brain surgery last June
For the first time in a decade my life can qualify as normal. If I wish to go shopping with a friend, I can. If I want a cup of tea, I simply make one - I don't need to wait for somebody to appear and help. At the cinema I do not have to be concerned that some parts may be dangerously loud, or to ensure I arrive long before others, so to safely secure a seat which would not be too far up the steps.
Gone are the days of having to plan everything in detail for every single thing I wanted to do. I can chat to strangers without having to race to make full medical disclosure before introductions are properly concluded.
I am no longer trying to control every area of my life as if it were precariously balancing on a cliff edge.
When people hear of epilepsy they are inclined to think of full body convulsions. However, seizures manifest in countless different forms.
In my own case the condition manifested with my arm jerking violently, so aggressively that I was forced to try and stabilise it by holding it with my other arm. But my efforts proved in vain. Initially, it would only last 30 seconds, but by the age of 32, a decade of seizures later, these episodes were lasting 15 minutes.
By that stage I was also experiencing falls which occurred without warning, resulting in numerous visits to the Emergency Department (ED).
I was diagnosed at 14 years of age. It was well controlled from then until I was 22. Thankfully, I managed to finish college without the condition interrupting my education. From then, however, it began to get progressively worse. The seizures became more intense and more frequent until I was experiencing on average 25 seizures per day.
While the physical manifestation of a seizure can be obvious, epilepsy is also an invisible illness. Seizures are just the tip of the iceberg, and it is difficult to comprehend exactly how imposing the condition can be.
Simple tasks and pleasures, such as riding a bike, swimming (at least without supervision), or cooking, are near impossible. My seizures were so unpredictable I spent a decade unable to lock a door. A shower or just making a cup of tea had all now become risks.
If going for dinner, I had to choose a restaurant that did not have a stairs; it had to have chairs with sides, so that if I blacked out at least I would not hit the floor. At the onset of what I called an 'aura', certain fabrics on my skin would aggravate the uncomfortable sensation further. So, I had to dress for seizures.
When going out anywhere the issue of parking available close to the door was always a concern. Walking on a main road was high risk; being audio-sensitive meant that a beep of a car could cause me to collapse. There were so many variables that I had no choice but to make my world very small. For years I have been unable to travel, unable to work in my adult life, to fully realise the potential and the hard work of having achieved a law degree. I was completely dependent on others.
When the option of surgery was inevitably mooted, it loomed like a monster rather than a saviour. I was petrified. To consent to have somebody interfere with our most precious and critical organ is not an easy thing to do. Finally I felt I had no choice and I went with the devil I did not know, as any other conceivable existence seemed more bearable that the one I was living.
The road to surgery would be a long one, a laborious process of various scans and tests, affording much time for contemplation and an emotional roller coaster as never before. I became obsessed. I Googled everything I could. I searched YouTube to watch a video of the actual surgery. Not a pretty sight. I joined countless forums and I made contact with others who had already had the operation. Only now can I see it for the futile exercise it was. Everybody is an expert of their own experience and no two are the same. There is no crash course in neurosurgery.
What the incessant researching did provide, however, and which I didn't recognise at the time, was a method of vocalising emotional concerns with somebody who has been in the same position.
To feel the same fear and have the same harsh reality presented to them. I was afraid my personality would change, that I wouldn't recognise people, or that after years of playing my beloved piano I would look at the instrument without any knowledge of what it was.
While my research was futile from a factual point, as a means of catharsis it was invaluable. By the time the morning of the surgery came round I was no longer nervous. I found myself able to fully trust the surgeon and his team. I also knew if I didn't do it I was committing myself to a life of mere existence.
I had my first craniotomy on May 31, 2018. This involved a grid being placed on the surface of my brain to pinpoint the exact location the seizure activity was originating from. I then spent a week in the epilepsy monitoring unit (EMU), a week I would not like to live through again. For 24 hours a day a camera records the ordeal, providing the medical team with as much information as possible.
My medication was reduced, sleep deprivation methods were implemented: any possible technique which can be used to provoke a seizure.
During these induced seizures I was required to talk the nurse through what I was experiencing, my sensations. As I could never talk during my seizures (not speaking somehow helped in mitigating the intensity of the seizure) it felt like a torture. Having somebody bombard you with questions while your body vibrates of its own volition is highly unpleasant. All the while the video is closely monitored, my descriptions read and comparisons made with what is shown on the EEG.
On June 7, 2018 was the day my life completely changed. During a five-hour operation the problem area of the brain was removed.
Whereas I was having 25 seizures per day (effectively meaning my days were not punctuated by seizures, but rather my seizures were occasionally and very briefly interrupted by a short period of solace), I am now practically seizure-free. In fact, what I refer to as a seizure now is a short four to five second trance on average once every two weeks, or provoked by tiredness. With anxiety and depression being more prevalent in people with epilepsy, the panic attacks, which were occurring in double figures daily, have also ceased.
I am now adjusting to a whole new reality. There are opportunities available that were never on my radar previously.
Having two dozen seizures per day does not provide much time for anything else. My life had revolved around the condition. My mind had always focused on different attempts at seizure prevention. I had spent all days seated for most of the day, and most days were spent in my bedroom. That way I could control any noises and could not be caught off guard. Unexpected noises would cause startle seizures, so it was easier to spend my time alone on/in bed. There was a mattress in the en suite as a safety precaution to try and reduce possible injury in the event of a seizure.
Looking back, it was a crazy existence. It is frightening what we can come to consider normal if it happens often enough.
My life now is immeasurably different. I am no longer as dependent on others. I am beginning to claim back the independence that had been stolen at age 22.
A decade later I can lock a door and feel comfortable, I can talk to strangers without the constant worry, I can go for dinner and not worry about types of chairs, stairs, and parking. I can cross a road without fear of collapsing.
It is as if I have just been released from prison. No more shackles, the triggers that used to haunt me daily are all gone.
This time last year I would avoid the unknown and unfamiliar at all costs. Nowadays, I seek it out.
Jenny McEntegart lives in Co Westmeath. For more information on the condition see epilepsy.org.uk
What is epilepsy?
Epilepsy is a condition described by Professor Norman Delanty, consultant neurologist as: "A tendency to have recurring seizures which originate in the brain."
Further elaborating that "a seizure is a brief and temporary malfunction of normal brain activity. Brief meaning in some cases it may only last for seconds, temporary meaning the brain activity returns to normal after the seizure."
The analogy of a computer crashing or electrical storm within the brain is often used. Neurons communicate with each other through electrochemical messages. When the normal pattern of these messages is interrupted it is akin to an electrical storm in the brain.