In March 2020, right at the start of a global pandemic, I had my first seizure. I had absence seizures all spring. It was very difficult as the NHS were understandably very busy dealing with the effects of COVID-19. My appointments kept being cancelled and took longer to be booked in for tests and for the results to come back. My GP kept chasing for the MRI scan and I was eventually given it privately in the August. Finally, I was diagnosed over the phone three months later.
It was a relief to finally have an official diagnosis after waiting for so long, suspended and unknowing. A label, if you will. However, once discharged I felt very alone. I had questions, but they went unanswered. My neurologists seemed to see me as a walking brain, rather than a human being.
Not being able to drive had a negative impact as I felt a loss of freedom. After my second seizure, it took months for my brain to restore itself and I just wasn’t retaining information. My memory problems meant I had to give up my work as a book editor. I worried that epilepsy was a lifetime diagnosis. Something that I would always have to endure, that I would always be reliant on medication for. I feared that it may get worse in the future or that my daughter may inherit it. It was only with the help of my friend with epilepsy, as well as charities such as Epilepsy Action, that I was able to learn more.
My husband David has been the most wonderful support I could ask for. He looked after me post-seizure, looked after our (then) two-year-old daughter whilst working full-time, as well as driving me everywhere. He witnessed it all and was so patient with me.
An epilepsy nurse also gave me the support that I needed. My questions were answered and a simple adjustment to my medication schedule meant that my memory restored itself and I was able to take up my job again. My nurse also changed my attitude towards epilepsy. Since then, I have rediscovered my love of theatre and have been cast as a lead role in a musical. There are a lot of lines to remember but I have no doubt that I can achieve it.
I feel mentally stronger than before and am taking chances that I would have been too fearful of before. And whilst the initial frustration was of feeling set adrift and alone, it just made me that much more determined to conquer it and get my life back. A life that I loved. A diagnosis is a chance to grow, to be tenacious, to rediscover what you want in life and what means the most to you.
I’m thankful of everything that I am and everything that I have. I feel more myself than I have done in years, even before my diagnosis. It took some time but I’m here now and happier than ever.”