To the Woman on the Train Staring at Me and My EEG Monitor

I don’t know whether you’d ever seen an EEG monitor before, but it seemed like you hadn’t so let me explain. Simply, an EEG is like an ECG but for your brain instead of your heart. It records the electrical activity in your brain, so that things like epilepsy can be diagnosed or ruled out.

There’s lots of different types of EEG, and I’ve had pretty much all of them, but the one you saw me wearing is called an Ambulatory EEG. It means you can walk around with it on. The recorder fits into a specially designed bag and you can carry on with your life without too much disturbance. This means that the doctors can see what your brain does day to day without you being in a hospital setting or doing it in a short time frame.

 

The wires are stuck onto your scalp with a horrible paste like glue that is hell to get out of your hair afterwards. While the machine is attached, you can’t get it wet or let any of the wires come off. You’re also required to write down your activities in a diary, change the batteries when necessary and push a button to mark when and if you have an “episode,” writing about it afterwards.

I was on the train with my family after watching my sister perform in a showcase at her school in the city. She’s just completing her first year there after winning a scholarship to study dance until she’s completed her GCSEs. I wasn’t going to miss that show for the world. My sister’s following her dreams and getting industry training early on in her career, something my illnesses prevented me from doing.

I wanted to tread the boards but realistically, because of my health, it’s hard for me to commit to amateur dramatics, let alone a professional casting. So, I pay as much interest as possible to my sister’s dancing and support her to no end. The only thing that would have stopped me from being at that show would be if I was stuck in the hospital.

So, on my third day of EEG recording, I was brave. Instead of hiding in the house, I put on some nicer clothes, tidied my hair as much as I could without dislodging the wires and dug out my free disabled train pass. I ignored the stares and the people turning around to walk the other way. I smiled at the inquisitive kids and I went to my sister’s performance with the rest of my family. It was an amazing performance by the way. My sister danced her own choreography to her friend’s original song and brought a tear to many an eye. The passion that her and her classmates have for their trade is just unbelievable.

We were making our way home, discussing the ins and outs of the show and getting all the backstage gossip from my little sis. I’ve had a few strange looks on our carriage but it’s getting late and there’s not really that many people on the train. An announcement plays that we’ll soon be arriving at our station. Carefully, so as not to fall or get tangled in my wires, I stand and make my way to the doors to join my family.

You’re there. You just…stare. Then that stare turns into a dirty look. At this point my sister cannot contain herself. She makes a rather loud comment to me, although I’m pretty sure the rest of the carriage and the next one heard it. “You wouldn’t stare and throw dirty looks at a person in a wheelchair, so why would you to somebody with wires and medical equipment all over their head? Some people are just unbelievable.” And it’s true. Suddenly, you don’t know where to look. The doors had hardly opened and you were out of them, scurrying away.

I made an effort that day; I conquered my fears and just did it. And I’m glad I did. How many people do you see around wearing EEG monitors?You don’t, right? That’s because people hide away, because of people like you. Because they don’t want the attention, because they hate having to wear it enough already, without other people staring at them.

But I made a stand. I didn’t just go out in my monitor, I travelled on a train, into the middle of the city; I walked from the station to my sister’s school; I drank an iced mocha and enjoyed a sweet treat in a central café; I watched a show; I waited at stage door; I ran for the train. I did everything a normal person would do. Because, regardless of my medical issues, that’s all I am, a normal person. I’m just the same as you or the man next to you. And I deserve to be treated just the same.

I’m not angry with you – my sister may be, but not me. I pity you. I want to educate you so that more people like me can venture out in medical equipment and feel as normal as possible without the stares and funny looks. That’s why I’m writing you this letter.

So, please, next time, leave the staring to curious children. And of course, feel free to get in touch with me. I’d quite happily chat to anybody who would like to ask questions. My virtual door is always open to all. I hope next time you’ll be able to stand next to me or my friends with dignity and a smile. Because I know I would if it was the other way around. We’re all human; treat us like it.

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Thinkstock photo via kasto80.