How did you find out your partner Claire had epilepsy? What was your immediate reaction to the news?
Claire’s Family:
When Claire was seven years old, she experienced her first seizure while washing mud off her wellington boots after a family walk. Her parents and older sisters were shocked and deeply concerned. Claire was taken to hospital and subsequently diagnosed with epilepsy.
Myself:
Claire told me about her epilepsy on the day we met, addressing it matter-of-factly. She said, "If I have a seizure, it's because I have epilepsy. Don't worry—just put me in the recovery position, and please don't call an ambulance."
Our first date a few days later was at an Italian restaurant. During lunch, Claire had an absence seizure. It wasn’t dramatic—after a minute or two, she seemed to come back to herself, excused herself to go to the ladies’ room, and left. When she didn’t return, I went to check and found her walking away from the restaurant, unresponsive. I caught up with her and encouraged her to return to our table, though she didn’t seem to recognise me. About 20 minutes later, she fully came back to herself and explained she experienced postictal automatism, a state similar to sleepwalking after a seizure. This was my first encounter with her condition.
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Could you tell us about the impact epilepsy had on both Claire and your family during her lifetime?
The main impact to us was our constant worry about Claire’s safety, especially when she was alone. She was determined to maintain her independence and refused to let epilepsy hold her back, even from potentially risky activities like swimming, cycling, and diving.
As a teenager, she took up diving and, on one occasion, she had a seizure while on the edge of the 10-metre platform. Despite incidents like this, she wouldn’t have accepted being ‘wrapped in cotton wool’.
There were times when her postictal automatism led to precarious situations:
When Claire had seizures in public, bystanders would often call an ambulance despite her wearing a lanyard asking them not to unless she was injured. Claire saw these incidents as inconveniences and a waste of emergency services’ time.
Despite these challenges, Claire refused to let epilepsy define her. She took on remarkable challenges: hiking mountains in New Zealand and climbing dunes in the Canary Islands. At the Hoover Dam in the USA, she fell over and banged her head before I could catch her, resulting in a trip to hospital.
The side effects of some medicines often proved harder for Claire to manage than her epilepsy itself, though her quality of life improved significantly when she was prescribed Keppra in 2001. That said, there were times when Claire’s epilepsy or medications brought on periods of depression.
Claire very sadly passed away during her sleep due to a seizure in December 2023. Are there any memories or details you’d like to add?
Claire worked full-time as a civil servant for most of her adult life. She retired at age 60, a few weeks before she died.
In 2010, we had a six-week holiday in New Zealand. These are just some of the activities Claire and I participated in:
The reason I list the above experiences is to show how Claire refused to let epilepsy stop her from doing things.
Claire loved to dance and went to dance classes into her fifties. She also loved music and we went to very many concerts of all types of music. Claire’s favourite band was Queen and her favourite solo artist was Bruce Springsteen. The last concert we went to was only ten days before she passed away – an Abba tribute act called Bjorn Again.
Claire’s favourite colour was purple and her favourite film was The Nightmare Before Christmas. In October 2023 we went to the Royal Albert Hall to see Danny Elfman perform songs from the film with a full orchestra. This may have been Claire’s favourite concert ever.
When I asked Claire what she would like for her 50th birthday, her answer was “skydiving”. So I booked her a tandem skydive and we drove to an airfield in the Midlands. Claire went up in the plane and came down strapped to an instructor. She loved it and had not a moment’s hesitation.
Why did you choose to support the Epilepsy Research Institute with a memorial fund?
Alongside her Will, Claire left a ‘letter of wishes’, explaining why she felt research into epilepsy is so important. She requested that people make donations to the Epilepsy Research Institute – her memorial fund was a way to honour this wish.
During her life, did Claire discuss her wishes to leave a legacy to research?
Claire mentioned this to others while having her Will drawn up in 2016, although she did not discuss it with me. However, I found a page of handwritten notes explaining her decision and that she wanted to support research rather than other epilepsy charities she had contributed to throughout her life.
You’ve also pledged to leave a legacy to the Epilepsy Research Institute. Why is this important to you, and what would you say to others considering doing the same?
I made this pledge because:
To anyone considering leaving a legacy, I would say: research has the power to transform lives, and your support can make that possible.
For more information on leaving a gift in your Will to the Epilepsy Research Institute, download our guide or contact Jo at [email protected].
