This Post is Brought to You by The Letter E

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 21^st 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.

Comments

[Johnboy]

Wow, that is a unique combination, Caro. I have even more respect for you knowing that you have both conditions and are doing what you are doing.

For me, there is no sigma regarding your epilspy, and I think it is really great that you can be and are a dentist.

Bravo!

[Shannon Lewis]

My uncles, who are identical twins, have epilepsy. They have completely normal, highly functioning lives. They take medication, so I've never witnessed a seizure and I'm not sure if my cousins (their children) have either.

You have a very centered take on it all. You'll make a great dentist :E (that's a smiley face with teeth).

[Caro]

Thank you both. Your positive comments mean a lot to me.

[Sandra Miller]

Caro,

Amazing.

Your ability to face such incredible adversity with so much strength and determination is truly inspirational.

Thank you so much for sharing your story.

[art-sweet]

Wow Caro,

I am amazed even more than ever by your determination, your self-confidence, and your eloquence.

Thanks for sharing this with us.

[art-sweet]

p.s. I wish you could be MY dentist!

[Scott K. Johnson]

Bravo Caro!!

Like Sandra said, very inspirational.

[Caro]

Thank you all.