Favourite food: Noodles. I can't get enough of noodles
Favourite activities: Swimming, reading, painting and hanging out with my cat, Madge
Favourite singer: Elliot Smith
Greatest Inspiration: People who live with epilepsy
On my wedding day back in 2013, I exchanged vows with my husband, Tom, which read that I would love him "broken, whole, however". He promised the same to me. We already knew, on speaking those words, that they would be put to the test many times over, as they had been over the previous 7 years.
That morning I had woken, excited but most of all relieved because the stressful few days leading up to our wedding had not caused Tom to have a seizure. Whilst many brides would worry about their hair or their mother-in-law, I had already taken out an insurance policy which meant that if Tom did have a seizure, we could reclaim some of the lost cost of the day.
As it happened, the day went phenomenally, and my worries went unfounded.
It has not always been that way. When I met Tom (in 6th form college), it was 2 years before I witnessed him have a seizure. He had entered into a good patch and so buoyed by the sense of security, we booked a round the world trip. Two weeks into the trip, all of that changed. I can still remember vividly my fear upon waking to Tom shaking violently and realising; right there in the middle of rural Thailand, that I didn’t have a clue what to do.
Since then Tom has endured many more seizures; both tonic-clonic and focal. The picture accompanying this article shows Tom and I dressed up to the nines for a work ball! 2 hours later Tom would go on to have 7 tonic-clonic seizures in a row, ending up in resus with his new tuxedo ruined and with me pacing the hospital in a ball gown. I will never forget the comments of the waiters at the venue where Toms seizures occurred; tutting and asking me to remove my husband from the bar area because he was putting other customers off their food.
As a wife and occasional carer of my husband with Epilepsy, the ignorance around the condition is something we both live with every day. Recently, a very close family member told Tom, with no hint of humour, that he had bought on his own epilepsy by staying up late as a teenager!
Tom is currently under investigation to see if he will make a good candidate for brain surgery - but you wouldn’t know it to look at him. It just goes to show that not all disabilities are visible! Tom is sparky, fiercely intelligent and never without a smile.
Self-Care & Mental Health
From my side, as someone affected already by anxiety and depression, I understood early on how important it would be for me to practice good self-care. On a bad day for Tom, I could not focus on anything at work and was constantly checking in on him. This not only built my anxiety to peak proportions but made Tom feel smothered and babied. So, I found myself a therapist, who I see weekly to this day, and I tell him every little fear and we worked through them together. Sometimes, you have to realise when you can’t do it alone! Asking for help is never a sign of weakness, in fact, it shows your strength.
My Mission & Conclusion
My Mission & Conclusion
My mission as Tom’s wife is to do my little bit to erase some of this confusion about the world’s most common neurological condition. I am an Accredited Volunteer with Epilepsy Action and actively encourage others touched by the condition to connect with me and share their thoughts and ideas.
Tom is always so thankful to me after he wakes from a seizure. He says that he doesn’t know anyone else who would ‘put up with this, or anyone else who would be his wife.’ I remind him of our vows and ask him: "If our positions were switched, would you look out for me?". I don't need to tell you his answer to my question by I think my favourite author, David Foster Wallace, summed it up pretty nicely when he said: “The really important kind of freedom involves attention, and awareness, and discipline, and effort, and being able truly to care about other people and to sacrifice for them, over and over, in myriad petty little unsexy ways, every day.”