Rhythm (and blues)
Today is International Epilepsy Day so I thought I'd tell my story of something that happened 33 days ago. It's a story still in search of an ending but if it helps people build an understanding of what epilepsy can be like then it will have done its job.
It was Wednesday 8 January and I was in Caffé Nero doing some emails; a normal day and I felt fine. The next thing I knew, it was Thursday and my wife Barbara was leaning over me, saying that I'd had some seizures. I was in intensive care with tubes everywhere, scared stiff I was about to die and asking if we could get a helicopter to fly my parents down so that I could hold them. Sounds odd now but it was a very real feeling at the time.
Apparently, I'd had an episode of convulsive status epilepticus (SE), a medical emergency that can lead to permanent brain damage or worse. In essence, SE is when a seizure becomes self-sustaining and puts your brain and heart under severe stress. In my case, I'd had three tonic-clonic seizures (the archetypal convulsive seizures that used to be called grand mal) separated by partial seizures (formerly petit mal), with the whole thing lasting for over an hour. Before this episode, my seizures had followed the 'standard' of one seizure lasting about two minutes.
I get no warnings of them and never have any knowledge afterwards of what’s happened but that usually doesn’t matter - I’m out for the shortest period of time and it’s time I don’t mind not knowing about. But this one was different and so I’ve tried to construct a picture of what happened. It’s been a bit like doing a jigsaw puzzle except that when you start off you don’t empty all the pieces on the table, you have to find them first and only then can you try to put them together. So that’s been my project for the last few weeks. I‘ve been humbled by what I learned.
Eve, a regular in the cafe, saw me stand upright and then fall. “Made such a noise. Everybody heard it. I didn’t really know what to do so I just sat there, holding your hand and speaking to you just in case you could hear anything. I think I was talking rubbish, but I wanted you to know I was there for you”. Lisa, a trained first aider who works in a candle shop down the road and had just popped in for a quick coffee, stepped forward to help, protected my head, got somebody else to time the seizure duration and found another person who knew how to access my iPhone Medical ID information and thus see what medication I was on and call Barbara. The cafe manageress called 999 immediately, ensuring that the Paramedics got there quickly. They struggled to get things under control and so, while she emptied the cafe of other people, they called two extra crews. After the best part of an hour I was stable enough to be shifted to the ambulance (where I had another seizure) and then on to hospital. I had a CT scan there but my breathing deteriorated so they put me on a ventilator. Somewhere down the line I was sedated too. I know all of this because the ICU lead consultant took the time to review the paramedics notes along with her own and then emailed me the information. Like I said, everybody has been amazing.
They brought me around on Thursday morning (on the second attempt - when Barbara arrived - having aborted the first because I tried to rip out the tubes (apparently that’s not uncommon) - and moved me to the High Dependency Unit at about 5pm. I was discharged from there late on Friday and arrived back home exhausted, confused, sad and scared - and 6kg lighter. I slept, off and on, for several days, interrupted only by hugs from the family and well wishes from friends. I've never felt so sad and I've never felt so in need of hugs. And I couldn't be more grateful for all the love they gave me. Since then so many people - other family members, friends and work colleagues - have been amazing. Chatty emails, phone calls, house visits, practical offers of help - nothing has been too much. And the circle of professional help is outstanding - from the paramedics (whose names sadly I don’t know), to Claire the critical care lead at the hospital, Rebecca the neurologist, Zoe the counsellor, my GP, and the HR team at work too. One person who’s been particularly helpful - somebody I’d never heard of just three weeks ago - is a lady called Torie Robinson, an epilepsy sufferer herself who’s committed to raising awareness of the condition. Torie called me and chatted for 50 minutes to help me prepare for my session with the neurologist, explaining what I needed to find out first if I was to maximise its value. In effect, she guided me through the game of blind jigsaw. So, you can see that I really am blessed.
My journey with epilepsy began in 1982. I was an undergraduate at Oxford Poly when one day I woke up on the floor near my bedroom door. The guy in the room next to me was the son of a doctor and a few days later he suggested I might want to see somebody. After several weeks of investigations, a letter arrived from Professor Matthews, the consultant at Oxford's John Radcliffe Infirmary: "As suspected, the tests confirm that you have epilepsy and will need to take medication, probably for the rest of your life". They knew how to break news gently back then... So, no driving for three years (those rules have changed now), no rugby and no swimming. It took a few years for them to get my medication right but once they did, things went well. In fact, by 2017 I'd gone 20 years without a seizure. As long as I took my medication I could do anything I wanted.
But in August 2017 I had what's known as a breakthrough seizure while driving my car. Fortunately, nobody else was involved and I only sustained a couple of cracked ribs but it was devastating to be reminded so abruptly that living life as a controlled epileptic means there are no guarantees. However, I made it through a year of not driving - walking 5.4 million steps covering 4,500 kilometres - and thought I'd never look back.
And then this.
Physically, I have recovered really well - although it will take some time for my stamina levels to get back to where they were, plus I have to wait three months before I'm allowed to walk in the woods by myself, and it will be a year before I can reapply for my driving licence - but the bigger challenge is my mental health. I know the things I have to manage - reduce my anxiety and stress levels, get more sleep, drink less and never ever forget to take my medication - but even then there are no guarantees. It could happen at any time, including when I'm alone. Right now, today, I don't know how to handle that thought but in time I hope I will find my new comfort zone. What I know for sure, though, is that not only do I have many special people in my circle of friends, there are many, many special other people out there - people I’ve never met - who won’t hesitate to help. And above all else, I know how wonderful my family is.
Disability comes in all shapes and sizes, sometimes visible, sometimes not. The important thing is to talk about it, to share our experiences and to be there for others. If anybody is reading this with a personal interest then feel free to get in touch (tom@ministract.com) and I’ll do my best to help and to point you in the right direction. There are some wonderful resources out there and nobody needs to endure epilepsy alone. We can get rhythm back into our lives, without the blues.
See here for a simple guide to epilepsy first aid. Great sources of help and info in the UK include Epilepsy Society, Epilepsy Action and Epilepsy Sparks
The pictures are rhythmic shots from a trip to Marseille almost four years ago and were taken with an Olympus OM-D E-M1 and either the 12-40mm f2.8 lens or the 40-150mm f2.8 lens. If you click on any of the thumbnails you'll be taken to a scrollable lightbox view.
