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Epilepsy and my Tongue…

I feel sorry for my tongue. It’s had a tough life. About a month ago, I once again attempted to bite it off during a seizure. Unfortunately, it was how I knew that I’d had another episode.

It was Monday morning and I knew I didn’t feel well. I was disjointed. I thought I was probably just tired because I hadn’t slept well at all. I kept telling myself that, but I knew it was much more. Coffee will fix it. My go-to thought. Coffee will fix anything (nb. It doesn’t). I decided to work from home. I sat at the table, opened up the laptop, logged on to the networks and emailed my boss explaining I was working from home as I didn’t feel too great. I swallowed down the fear. After all, I’m only tired!

About lunchtime, I got an email from my boss asking if I was working from home today because no-one had heard from me?! Weird, I thought as I emailed back explaining I’d already let him know I was working from home. I started to register that my mouth was sore and my back felt tender and stiff. Hmm. Weird. I went to the bathroom and saw the bruising first. Slight swelling around my eye. I opened my mouth and my mangled tongue appeared in the mirror. Swollen, bitten and residual blood on my teeth. I lifted my shirt and turned my back to the mirror. Yep, there was the imprint of the wooden chair, in bruises, on my back. I called my parents and told them I had a fit. I was a bit bruised and battered and my tongue hurt a lot, but I was fine. I went back to the laptop to email my boss and explain what had happened. It was then that I realised it wasn’t Monday anymore. It was Tuesday lunchtime and I’d lost 24 hours. Again.

The following Friday saw me in hospital with excruciating back pain. To cut a long story short, I suffered whiplash-like injuries when I had the fit sitting on the hard chair. I didn’t rest enough, I pushed myself too hard, too fast in an attempt to get back to “normal”. Result – hospital, drugs, physio, depression, pain, anger, anxiety, broken specs, chipped teeth and a bloody sore tongue.

It was my parents 50th wedding anniversary, a couple of months ago. 50 years. For the first time in about 9 years the remaining members of our immediate family were in one room together. Missing only one cousin and her son. We had a lot of fun. I think although our average age must have been in the 40s, I think we made the most noise in a place where a wedding reception was being held and a karate meet was going on! Raucous. Hilarious. Memorable and full of laughter and great memories.

My niece was there for a few hours. Thankfully her seizure has been a single event to date and after multiple tests including an mri, there is no apparent, sinister underlying cause. She was on fine form at the celebration. A real little actress in the making and after an initial show of shyness, she took centre stage and loved the attention she was getting, as the only child in attendance! We all got educated on the proper names for, I think, every dinosaur that ever walked the earth! There was one called Bob, another called Kyle and seemingly Alasdair was a very popular prehistoric creature. And so the stories went on…..The thought processes behind a child’s imagination never fail to amaze me. The way they view their little world and their place in it, is special. It’s a real shame that many of us lose that as we get older.

Her biggest problem in life is making sure that everyone yells “mascarpone cheese” when photos are being taken. It never fails to make all of those present, part of the party or not, smile & the photos that are achieved are reflective of that.

I hope she never loses that way of looking at life, but I know she will. We all do. Life has a habit of getting in the way of life. Responsibilities and commitments take the place of riotous and care-free laughter. I envy those that grow up and are able to retain a luminous way of viewing life. I often wonder how I can get it back.

I’m contemplating my jigsaw. There are a couple of pieces that I’m turning over in my hand at the moment. Polar opposites in potential outcomes and both equally appealing to me. I can’t seem to find the part of the jigsaw they’re meant to fit into. Perhaps it’s not the right time or perhaps these aren’t my pieces. I think I’ll hold onto them just now and see if it becomes apparent what the next step is.

Perhaps it’s time for something radical. Perhaps these pieces have gravitated to me because they’re the catalyst for something to happen. I wonder if it’s possible to ponder for too long? I know the answer to that, of course I do. Hesitate too long and the moment passes. And, it often is just one moment.

If I was the same age as my niece -4-, I don’t think I would be hesitating. She would chase what she sees as the most sparkly and princess-like and she would not think twice about whether that’s a superficial choice. She lives in the moment. She doesn’t actually know how to live any other way.

But, I’m not 4; I’m 44. My world doesn’t have the sparkles and fairy dust anymore. In fairness, I was always more of a tomboy than a princess, but the concept is the same. Why do we let ourselves lose the magic? Do we have a choice? At what point do responsibilities, practicalities and desires take over? When does it become more important to have things than to experience things? And more pertinent, how do we reverse it when we figure out that life isn’t working the way it should?

My tongue has healed. The bruises have faded. My glasses can be replaced (unfortunately, beyond repair). My back is still in spasm, but apparently the combination of drugs, time and physio will fix it. My epileptic brain is in turmoil. The darkness is back, not surprisingly. The questions are tumbling around my mind as if on super-spin and the answers are elusive.

I’m in that place. Again.