Strength and Resilience: Sharing narratives from individuals living with epilepsy.
Author: Edwige Smague Based on a true story
A Journey of resilience: A story of hope
Facing stigma, it’s comforting to hold onto examples of those who prove that it’s possible to rise above the challenges of epilepsy and rebuild a life. Vicky shares her story and the strategies that have guided her toward resilience.
If there is one thing Vicky is sure of, it is that no one can be and has been. Forget what has been and keep focused on what is to come. The story of this 25-year-old woman, who punctuates her anecdotes with humour, can serve as a guide and a reminder.
Living with epilepsy means resetting everything, erasing the life you had before, and anchoring yourself in a new reality that you have to embrace. Find markers because running away from the painful truth you don't want would mean the end of everything. Vicky doesn’t live in a dream, though the seizures sometimes trick her into thinking otherwise.
Born in the south of France, Vicky's life is about to change on the eve of her final year at the high school. Without warning, an epileptic seizure disrupted her entry into year 13.
The doctor quickly diagnosed epilepsy, warning that the disease could become permanent if another seizure occurred. At seventeen, what else can a teenager think except that life is unfair and overwhelming? Epilepsy shattered her dreams and limited her options. Vicky was devastated and had no choice but to get back on her feet.
Although, for a while, she chose to remain there, devastated and unarmed, to have time to understand and review all the details that could have triggered this condition: a stress spike, or perhaps her brain exploded like a pressure cooker as a result of holding back her emotions? - Yet Vicky has no family history of epilepsy, has never suffered a trauma, and has never contracted any illness that could lead to epilepsy.
We must seek a rational explanation to make sense of this story or make things even more difficult. Vicky admits that at this point, she went through a phase of denial, pushing the limits of sleep by going out and even testing the euphoria of a few glasses of alcohol.
This chapter in her former life ends with a smile as she thanks her parents for supporting her and making her understand the risks she was exposing herself to. However, it took an emotional shock, a sentimental chaos culminating in a violent seizure, for Vicky to realise the danger.
After that, the seizures continued every month. Vicky knew she had to regain her body, reintegrate her mind and get on with her life. Deep introspection was necessary on the road to acceptance. However, it was only by adopting a healthy lifestyle that the worst crises finally disappeared.
A few years later, Vicky is in a committed relationship and naturally asks for a method of birth control that is compatible with her anti-epileptic treatment. Faced with conflicting advice, the health professionals pass the buck: ‘Ask your gynaecologist’, says the neurologist, while the gynaecologist argues that his expertise does not lie in the brains of his patients.
The various professionals involved in Vicky's care are pretty obviously not communicating with each other. The clueless young woman gets the answer on the package of oral contraceptives that the hormones in the pill are not compatible with the anti-epileptic treatment: ‘I could have read the instructions from the start’, blaming herself.
For many years, Vicky has been under the guidance of a leading neurologist, recognised by his peers as a figure in the field of epilepsy, but her life is finally about to change when he retires.
She meets a young neurologist who, as Vicky tells her story, opens her eyes widely, surprised or perhaps even dismayed by the harsh treatment she has been on from the start - Treatment is not suitable for a young woman, and even less so if you want to have children, it's much too strong-. The old treatment has been replaced by lighter molecules compatible with taking a birth control tablet.
From this transitional phase, Vicky remembers almost nothing. Sleeping twelve hours a day, it was those closest that would tell her about the lethargic state she was in.
As a result of this therapeutic adjustment, Vicky found it challenging to identify the appearance of a new phenomenon. In fact, it is possible that new types of seizures, which were previously controlled by the old treatment, are appearing.
These focal seizures, also known as partial seizures, are located in the language areas (Broca's or Wernicke's areas) and can alter consciousness and lead to unusual perceptions or behaviour. Vicky describes how, during a conversation, she sometimes heard words strangely or incomprehensibly, similar to a foreign language, even though she was perfectly conscious.
Other symptoms include buzzing in the ears (tinnitus) or unusual auditory perceptions such as distorted hearing, noises or deformed voices, which are common in focal seizures. There are also involuntary gestures, such as Vicky trying to turn on the television with a bottle of shampoo; these actions are called automatisms. These behaviours may seem logical to the person during the crisis but may be unsuitable. So it's a daydream. But you can't live in a dream; at most, you're watching a stage. But there's no show here, just a situation where you must anchor yourself. In response, Vicky set up a distraction strategy using a nearby glass of water. Even if water doesn't treat epilepsy or stop a focal seizure in progress, drinking (in small amounts) can refocus or divert attention from a seizure-onset sensation and prevent its escalation as long as the person perceives an ‘aura’ or warning signs.
However, Vicky explains that the underlying idea is to hide this out-of-control brain rebellion from others. Avoiding judgement and worried stares, Vicky insists on the mental prowess it takes to find the resources and the right moment to cut off in the middle of a conversation – Don't move, I'll be right back- and leave in an attempt to negotiate with this epilepsy.
While these episodes occur rarely, they are usually caused by a lack of sleep,’ says.
Despite finding stability with the support and reassurance of her family and her partner, Vicky describes the difficulties her new condition has caused in her circle of friends and colleagues right from the start. She points out that, beyond the condition of epilepsy, it is society's prejudices that weigh most heavily on her. Particularly in her circle of friends, Vicky sometimes met friends of friends who had been informed without her knowledge about things she couldn't do and which could spoil the party. Epilepsy pushed Vicky into the second row, especially as the rules of life were much stricter for her than for all her friends, for whom it was inconceivable not to drink alcohol or sleep early on a Saturday night. As on those evenings when, spontaneously, plans were made without Vicky being able to keep up with the rest of the group, there inevitably followed remarks that were as hurtful as they were guilt-inducing. Vicky, who readily admits that these experiences have given her values and made her more adaptable, confesses that what is most shocking happens professionally. She is affected by her experiences with employers who, if they had known, would never have extended a trial period, accusing her of not being very professional and of having to miss work because of her seizures.
These life experiences inspired Vicky to create an Instagram account for understanding epilepsy. Making progress in learning about the disease has helped her a great deal in mourning the loss of her previous life. Even though the account started as a personal blog, the messages of thanks and recognition have been pouring in - I feel so much less alone reading your posts @mlle.epilepsie, not yet strong enough to talk about my epilepsy either in comments or around me, but your little insta account gives me strength. Thank you ❤️.
Although it's impossible to forget this illness, due in part to the daily treatment, Vicky is mastering her unique and resilient path in life. Even if there were a before and an after, Vicky would no longer know what it was like to live without epilepsy, so much so that she had to deal with all the risk factors.
Vicky lets the crises pass her by without judging them, and even if all this has made specific dreams unattainable, such as one day becoming a nurse, she has come to accept over time this condition that she describes at her side but does not define her as an individual.
With great intelligence, Vicky examines the advances made in research, which is still far from having explored all the avenues, particularly in terms of understanding emotions and helping people to manage their balance, especially in terms of triggering emotions.
