For many, significant life events like childbirth or weddings are etched into memory forever. However, for individuals living with epilepsy, these cherished moments can vanish, leaving behind a void often misunderstood by the public. Amy-Jane Foster, who suffers from severe epilepsy, shared her profound experience of losing memories of her son’s early years, including the birth itself. Her story highlights a lesser-known but devastating impact of the condition, as she campaigns with Epilepsy Action to raise awareness about these ‘missing memories’.
The Elusive Early Years of Motherhood
Amy-Jane Foster, 45, from Fordingbridge, Hampshire, describes the first two years of her son Joe’s life as a complete blur. Joe, now 15, was born seven months into her pregnancy, a ‘miracle baby’ after two previous miscarriages. Despite the joy of his arrival, Amy-Jane has no recollection of the labour, discovering his gender, or the initial moments of holding and bonding with her newborn. “I can’t remember my labour, finding out if I’d had a son or daughter, that first kiss, cuddle and touch,” she stated. The absence of these foundational memories has led to feelings of guilt and inadequacy as a mother. “I have no recollection of giving him his first feed, changing a nappy, settling him,” Amy-Jane explained. “The first 24 months of his life are just a blur.”
Her epilepsy, which began with her first seizure at age 11, has necessitated strong medication and two brain surgeries. Severe tonic-clonic seizures, which can last up to three minutes, involve her body stiffening and jerking while she loses consciousness. The memory loss associated with her condition means she rarely feels like the primary caregiver. “Joe and I are very close but I sometimes feel I am his best friend, not his mum,” she admitted. “He tells me everything but I do feel cheated and hurt, as I feel I have not been the best mum I could be.”
Amy-Jane’s parents and sister provided crucial support in raising Joe during his early years, enabling her to manage her condition. While grateful for her son and her supportive family, she acknowledges the cruelty of epilepsy stealing such precious memories. She is now rarely left alone, unable to work, and lives with her parents.
A Wedding Day Lost to Epilepsy
Bob Sutcliffe, 55, from Witherslack, Cumbria, shares a similar struggle with memory loss due to epilepsy. He cannot recall any details of his wedding day in 2000 or his honeymoon in Mauritius. “There are moments in my life that I should be able to hold on to forever, but I can’t,” Bob said. The significant event of his wife Jan walking down the aisle, their vows, the ceremony, speeches, and reception are all absent from his memory.
His memories of these pivotal life events are pieced together through photographs and the recollections of others. “It feels like I’m piecing things together through AI,” he remarked, highlighting the disorienting nature of relying on external sources for personal history. Even his university graduation in 1993, with his parents present, exists only as a fact, not a lived memory.
Bob experienced his first seizure at age 36, diagnosed as juvenile myoclonic epilepsy. The condition, typically appearing in childhood, surfaced in his mid-30s, triggered by stress, tiredness, or overheating. While seizures initially occurred daily, they became less frequent over time. After years of searching, he found a specialist in 2010 who helped manage his condition with medication.
Life-Altering Decisions and Creative Contributions
The impact of epilepsy on Bob and Jan’s life extended to major decisions, including the choice not to have children. Bob expressed concern about the risk of having a seizure while caring for a baby, deeming it unfair to Jan. This mutual decision, though understood, remains a source of sadness for the couple.
Jan found holidays, particularly Christmas and summer breaks, challenging due to the absence of children. She longed to share the joys of the season and outdoor activities with her own family. Despite the challenges, Bob pursued his dream of becoming a primary school teacher after being told he might never work again. He has also channeled his artistic talents into creating greetings cards for Epilepsy Action. Furthermore, he founded The Creative Health Trust UK, which has raised over £1 million to support creative activities for terminally ill patients and their families in hospices.
Epilepsy Action’s Campaign for Understanding
Jon Eaton, director of communications and digital engagement for Epilepsy Action, emphasized the isolating nature of epilepsy. “Every year, we hear from thousands of people suddenly isolated by a condition that can rob them of consciousness at a moment’s notice,” he stated. “Alone, they struggle to regain control, while missing the key memories that make them who they are.”
Epilepsy Action aims to help individuals regain a sense of control and live well despite the condition. The charity encourages public support through understanding, compassion, and conversation with those affected by epilepsy. For individuals seeking support with diagnosis or any aspect of epilepsy, resources are available through Epilepsy Action’s website (epilepsy.org.uk) or their helpline at 0808 800 5050.
Conclusion: Bridging the Memory Gap
The experiences of Amy-Jane Foster and Bob Sutcliffe underscore the profound and often unseen consequences of epilepsy, particularly the devastating impact of memory loss. These personal accounts, shared as part of Epilepsy Action’s Missing Memories campaign, serve as a powerful reminder that epilepsy affects not just physical health but also the very fabric of personal history and identity. By fostering greater public awareness and offering unwavering support, communities can help bridge the gap left by these stolen memories, enabling individuals to live fuller, more connected lives.
