In November 1999, as a 19 year old who’d just begun my
second year of dental school, I woke up in the Accident and Emergency
Department of St Thomas’ Hospital with the mother of all headaches. All I think
I know for certain is that had I rolled over and pulled the duvet over my head
that morning, as I desperately wanted to do, I probably wouldn’t be writing
this now. In fact, none of the last six and a half years would have happened
for me, because by the time anyone had found me in my bed, I’d probably already
have been dead. Claimed by meningitis.
There are details that don’t matter much now. Like how they
struggled with a lumbar puncture because I have “unusual spinal anatomy” and by
the time they drew fluid I’d already been being pumped with antibiotics for 20
hours. The fact that, because I perked up, and they were short of beds, they
sent me home before they had confirmed the diagnosis. The fact that if I hadn’t
been taken almost straight back to (a different) hospital, and fought hard to
hang on, I also wouldn’t be writing this now.
There are details that have a small amount of relevance now.
Like how the number of antibiotics they used led to C. Difficile, and my
lower GI tract all but stopped working. I got reminders of the damage done for
some time, but they are rare now.
Then there are the things that really matter, matter to this
day and likely will matter always.
After I’d fought off the infection that threatened my life,
I thought I’d won. I didn’t know straight away that I’d come out the other side
irrevocably changed.
A change defined by the letter E.
E for Epilepsy.
You see, for me, seizures aren’t all about the blood sugar
level. They are there as a threat, albeit a small one, creeping behind me every
day no matter how high or low I am, ready to pounce if I forget a dose of
medication or fail to get enough sleep. They stop me from being able to drive a
car, and they cause no end of narrow-minded prejudice. Like diabetes, epilepsy
does not define me, but it is, and always will be, a part of me.
I know what you are thinking.
You’re thinking: how can someone with epilepsy be a dentist?
If you think for even a moment that I haven’t asked myself
that question a thousand times, then you’ve another think coming. And if you
didn’t think it yourself, maybe you should have. It is a valid question. But
let me explain.
First and foremost: My epilepsy is under control. I have
occasional seizures in my sleep – which is why I’m still barred from driving a
car, but I have ben assessed and passed as fit to work as a dentist.
Secondly, let me clarify that not all seizures involve
people dropping to the floor without warning and thrashing around, as often
portrayed in the media. Some of my seizures finish up that way, but not all,
and most of those that have were preceded by an aura. Most seizures are actually far scarier for me, forcing me into a
kind of personal hell of distorted sound and skewed sensation, but having
little impact on people around me.
Had things worked out differently, I’d probably never actually
have become a dentist. If I’d developed epilepsy a couple of years earlier, for
example. However, although I had meningitis at the beginning of my second year
of dental school, I only had a couple of seizures that year, which were
attributed to my brain healing itself. It wasn’t until I was well into my third
year of study that they really started, and I finally got a formal diagnosis of
epilepsy shortly after my 21st birthday. The fact that I was so far
through, and convinced by supportive friends, family, tutors and neurologist, I
made the decision to go for it.
I took a year out of clinical dentistry to study for a basic
science degree in pharmacology and biomaterials, and committed to getting the
seizures under control. Unfortunately epilepsy is not like diabetes. There is
actually very little that you can do to positively influence the outcome. You
can take the meds as prescribed, and identify and avoid triggers, such as
alcohol, stress and lack of sleep, but otherwise you are at the mercy of your
condition. Of course, this also has benefits. Now that my seizures are under
control, I need pay very little attention to epilepsy, something that will
never be true for diabetes.
That is not to say that it is, or was easy. I was
unfortunate enough to develop encephalitis during my ‘year out’ which has many
similarities to meningitis, and can causes your brain to swell until it crushes
itself inside your skull. I found myself fighting all over again, and this time
was left with peripheral nerve damage, caused either by the infection itself or
the bungled attempts at a lumbar puncture, that meant I needed to work hard at
remembering how to put one foot in front of the other and walk.
And worse than that were the prejudices and stereotypes
perpetuated by narrow-minded people, which have continually both astonished and
appalled me. Whilst I have no doubt that it was the countless supportive people
who really got me through, it was equally the many cruel, thoughtless people
who nearly finished me off. People who told me that I wasn’t fit to live a
normal life, never mind be a dentist, people who laughed at my seizures or said
they were exaggerated… the memories still hurt. Sadly epilepsy still carries a
great stigma, and is nowhere near as well accepted as diabetes usually is. Ignorance
is probably a major driving force.
Epilepsy also threatened to destroy me emotionally in way
that diabetes never did. Perhaps because I don’t remember a time before
diabetes, but epilepsy was something completely new and life altering that I
had to adapt to. Perhaps because I had diabetes under control before I got to
wanting to do things that out-of-control diabetes could interfere with, but
epilepsy came along and took away my driving license and threatened to take
away my career plans. Perhaps because, like the stories that emerge from
acquaintances on discovering you have diabetes, about relatives and friends who
have lost limbs and gone blind, there are stories about epilepsy – of people
being locked up in institutions, of people unable to live alone and function
normally. And those stories were much harder to brush off when my own epilepsy
hadn’t yet approached ‘controlled’.
Epilepsy will, as I said at the beginning, always affect me.
Even if I never have another seizure, I am unlikely to be able to stop taking
medication. Even if I never have another seizure, I will still in certain
circumstances, be stigmatized by having had epilepsy. That is what lay behind
the Open Letter I published last week. That was railing against somebody’s
prejudice based on information they obtained from an unidentified source from
the time before my seizures were controlled.
Given the choice between epilepsy and diabetes? I’d find it
very difficult. Each has given and taken away different things. Epilepsy has a
greater stigma, but for me, is much easier to control. Diabetes… well, if
you’re reading this, chances are you know the challenges that poses. The two
things together are a unique, and just occasionally explosive, mix, but at the
end of the day they make me what I am.
It begins with optimism that it won’t be that long. After
all if they wouldn’t see you when you were ten minutes late, they probably
never run later than that themselves. The hands on the clock slowly turn round.
You have to verify with your watch: yes, you really have only been here five
minutes. Ten minutes come and go, and finally fifteen.
The ez-wrap is a piece of plastic that slots on the back of the IR1200, creating a channel between it and the pump. You then wrap the excess tubing around the ez-wrap, sitting in the channel, tuck the pump in your pocket and go. No embarrassing hanging tubes, or sudden door-knob snags.
