Sunday 18 May 2014

Day 1: The Hope Factory

Firstly, I should tell you that I'm writing a blog a day for the whole of UK National Epilepsy Week, which by the way... Starts today!

I woke up this morning, to my music which was playing through the night as it usually does and what will I'm told be one of the sunniest days of the year. It's a good start to National Epilepsy Week in my view and to be quite honest, the sun always makes me feel bright myself and hopeful.

The theme of National Epilepsy Week this year is about diagnoses. While I know the stats and how lucky I was to have had my surgery, I still believe that after a diagnoses, people with the condition should never give up hope of having their seizures controlled or cured altogether.

I think one of the lowest points of my life, was when I had the breakthrough seizure while working in Glasgow as a Police Constable. I had everything planned out, I was almost 19, I had a 30 year career and a great pension to look forward to, financial security, a car and independence and for a teenager, a huge salary and clump of money from the pay I wasn't really using while at the fully catered and residential Scottish Police College.
I had it made.
But life has a pretty good way of throwing a spanner in the works of your plans. One night in Glasgow out with friends, I had the breakthrough seizure. It didn't take a lot to be re-diagnosed with epilepsy again, so I guess I've had 2 diagnoses.

But here's the thing, they weren't life sentences.

What my epilepsy was like before the age of 14, was well, pretty horrific I won't lie. But I went to a place where I was given hope, The Sick Children's Hospital in Edinburgh. Having my Neurosurgery, which I technically had twice... one work up operation, where electrode rods were implanted in my brain for a week or two so that the doctors could very specifically isolate where my epilepsy was coming from, then the second to remove the scar that was causing it. No matter how many side effects I experienced from medications, I never really felt like my epilepsy would be as even as close to as frequent and serious as it was, since it was diagnosed when I was 9. I never understood why really, maybe blind hope of a kid who had a childish optimism, or maybe it was an odd intuition, but whenever I was in Ward 7, I always felt like I was going to be cured.

The second time I was diagnosed, after I got over the disappointment of loosing my career, I began to get focused on controlling what was left of my epilepsy with medication. The funny thing about what happened, was that I still remember standing to attention during my passing out parade at the Police College and thinking, hmm... it's a shame I never got to go to university. As it turned out, I went to one of the best universities in the country, where after getting such enjoyment from playing hockey while in the police, I went on to study Sport at Durham.
Although I had some major hiccups along the way, the number of medications that were around for me to try were huge, so I never really lost my optimism about controlling my few grand-mal tonic-clonic seizures. Eventually I went to the National Hospital for Neurology and Neurosurgery at Queens Square in London. It was a revelation and they sent me to the NSE's epilepsy hospital in Chalfont St. Peter. Not only did they diagnose my epilepsy properly, understand it better and put me on the medications, which so far, apart from the occasions I have forgotten to take them morning and night, (by the way, I'm not a good case study here... Take your medication!!) have meant I haven't had any seizures.

I mean how great is that? I owe a lot, to a really large number of people who looked after me. But the amazing thing is, the technology and understanding of Neurology and epilepsy in particular, is always moving on and getting better. Last year they found what looks like the beginnings of a gene therapy for curing epilepsy, calm down genes in the brain... Brilliant!

The fact we have some amazing hospitals in this country, although I know we're not perfect, means that we should never give up hope after a diagnoses of epilepsy. The Sick Kids' in Edinburgh changed my life. Even though I didn't end up as a career Constable, I got to do some truly amazing things, go to university, cycle across America, coach young kids sport... carry the Olympic Flame!
I wouldn't have gotten to do any of it without the hospital and all the staff in Ward 7, so once the building works are finished there, I'll be making a special delivery.

I'm so proud of owning an Olympic torch, it's one of the most incredible objects around I think. But it's currently residing in where I consider, is not it's rightful home, in my flat. I don't think it belongs here, because of what a small Neurology hospital ward did for me. I want the kids of Ward 7 to know that they shouldn't give up hope either, so I've agreed with the Sick Kids Friends Foundation, to hold it in trust in Ward 7, until my kids (if I have any!) decide they would like it.
I can't really do much to repay the impact Ward 7 had on my life, but I hope this goes a little way to paying some of it off a little and letting the kids there know that there's always hope as long as there's the science and the care around to feed it.

I'm very lucky indeed that I don't need to hope anymore. After developing it two and a half decades ago, I'm just living my life seizure free.

No comments:

Post a Comment