Epilepsy and Eccedentesiasts…

So, on Wednesday night my brother found my 4-year old niece, limp and unresponsive, in her bed. How utterly terrifying. He put her in the recovery position and they waited for an ambulance. He didn’t witness her having a seizure but she did have a prolonged episode where she had small twitches down her left side. I can’t imagine what must have been going through his mind. Today is Sunday and she is still in hospital. She has had CT scans and a heart trace and has been monitored carefully. She isn’t getting medication anymore and hopefully she will be allowed home today. Yesterday, she got a couple of hours out of the hospital, but unfortunately she was required to go back just for further observation. My brother described it as being like an open prison. This has been my niece’s first, and hopefully last, apparent seizure. As is right, her tests came back clear and she isn’t being diagnosed with epilepsy. Phew. But she is being sent for an MRI and her parents are meeting with a seizure nurse so they can know exactly what to do if it should happen again and they’re being given meds for her should she have a seizure and it lasts for longer than 5 minutes. The hospital has done everything they can, and more than I would have expected, to arm her parents with knowledge. My niece has been a trooper throughout the whole episode and taken all the needles and medication without complaint and recovered very quickly from the initial episode. What a little star. 

A frightening time for the family. The whole family. 

If you’ve been reading this blog for a while, you will know that there is a genetic link to epilepsy within the family. I have it (doh, obviously) and there are at least 2 other instances of it within the family tree that I’m aware of. My cousin had a seizure at 15 which proved to be a one-off and, currently, I’m the only family member that has a diagnosis of epilepsy, thankfully. I would wish it on no-one. 

It’s entirely likely that my niece’s episode was a one-off. I hope her parents treat it as such and don’t wrap her up in an extra layer of cottonwool on the off chance that it may happen again. Like Canut could not hold back the tide, no-one can prevent epilepsy from occurring. The trick is to try to live a life as close to normal as is possible within the confines of your own individual diagnosis. And if you haven’t had the diagnosis then don’t live as if you have or indeed as if you might. There is ultimately no point.

I’ve been a little quiet in this blog for a while now. I’ve been busy touring the darker recesses of my mind and I didn’t want to write about it. It felt too inky black. But my niece’s episode has brought me to the pad once again. Epilepsy comes with its challenges. So does depression and it’s depression that has been routing around in my wiring for the past couple of months. The trigger of this particular depression, I’m not 100% sure of, I often don’t know at all. It comes in waves for me and this current episode is rough waters and giant waves. I haven’t been able to get on a train or go on a plane since my last seizure in June last year. I’ve been going to Poland a couple of times a year for the past few years, by myself, very happily. But not since I came to in a pool of vomit last year. Much as I usually try not to dwell on my episodes, I don’t usually see the point, I’ve been in a depression for pretty much the entire time since it happened. I’m scared to travel. I’m scared to travel on my own. I’ve missed a retirement party, I’ve missed holidays, I’ve even booked flights and train tickets thinking I’d get over myself and my desire to go away would kick in, but no. It’s not so bad if I’m travelling with someone. It feels different, but by myself? Not a chance. 

What do I do? I’m struggling to make people understand my terror. I’m struggling to understand it myself. Am I reverting to a time when I was scared of everything except my own four walls? I don’t know. Depression is one thing, but the fear of being on a bus, train, plane by myself and having another episode is consuming me. The thought of never again wandering the streets of Krakow myself is paralysing me rather than shaking me out of my fear. The thought of being alone is just too much for me to process. I don’t know why. 

One friend has been trying to get me to go visit her in Ireland. I want to, I truly do, but I’m terrified of travelling there alone. I’ve booked flights in the hope I would man-up as it were, but no, I can’t do it. Another friend wants me to spend time with her in London. Same country, yep, but the thought of the train journey is too overwhelming. All I can do is hope they understand. I don’t know if they do. I pray they don’t think I’m making excuses. I haven’t seen my oldest friend in almost a year because of this ridiculous fear. She is a 2-hour train ride away. 2-hours. It seems like 2-months to me at the moment. 

I have to admit that I’m struggling at the moment. I haven’t wandered in this level of darkness for this length of time in an age. Yes, I have tried to talk to someone about this. I can’t articulate it. When I give a voice to my fear, it sounds ludicrous even to me, but I can’t contain it. I can’t tighten the leash and bring it back under control. I’m becoming the recluse again. The tears come before the words and I find myself lost and unable to adequately describe what’s going on internally without it bordering on the ridiculous. 

At work, the smile is plastered on and like the eccedentesiast that I am, the fear is pushed back to behind that smile and my loudness tries to drown out the chattering of the fear and depression within. 

Haunted by my own spirit. My strength is waning and I know this depression is getting deeper. 

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