Epilepsy and Feelings…

The best things in life are free? Rubbish. The best things in life can be bought pretty cheaply in Aldi, or Waitrose if you’re feeling extravagant….Are the best feelings in life free? Or, are we just free to feel..?

It’s been a pretty crappy week. I’m not entirely sure why, but I wound myself up into a right frenzy over the latest EEG. Lost it completely at work, never a good thing, and basically just got myself tied up in knots over something I can’t control. Those feelings of frustration and helplessness were certainly free, in monetary terms anyway. I had to stay awake for 24 hours without caffeine. Why is it that when you want to sleep you can’t and when you need to stay awake you could sleep on a chicken’s lip?? I’m grateful for a text conversation with a great friend at 3am, who was awake feeding her young baby. And to another great friend who was on holiday and in a different time zone…I cleaned to help me stay awake. My place is gleaming. Or, at least it was…

The morning came slowly and I made my way to the hospital. I was wondering who was going to bear the brunt of my fatigue. Kirsty with no sleep is not pleasant. Kirsty with no sleep or caffeine is a pure bitch from hell. As it turned out, I couldn’t be bothered to even get irritated. I’m very familiar with the Dept. Of Clinical Neurosciences. The room where they perform the EEGs is basically right opposite the psych. ward. I know this because I’ve been on this ward. This is one of the wards that I tried to make a bid for freedom from. I’ve banged on those ward doors and I’ve yelled at nurses, doctors, paramedics, anyone there really. So, they decide to perform a sleep-deprived EEG in a small, shabby room just over the corridor. The room is right under a bathroom, right next door to an office and, at the moment anyway, overlooking a building site. So, I’m lying on the bed with the electrodes in place. The physiologist closes the curtains, switches off the lights and asks me to try to sleep. Someone pees upstairs. Thankfully they flush, but not sure they washed their hands…, the office next door is busy with people going in and out, door slamming each time. The builders are having a not-so-polite conversation with each other as to whether it was time for a break. I want to laugh. Really? Sleep? Someone, presumably on the psych. ward, starts screaming out that they’re trying to kill him. I find this a bit upsetting. The distress in his voice was as clear as a bell to me. I wanted to get up and go to him. But, I lay where I was and tried to tune out the ambience.

The sound of that man’s cries have stayed with me. I don’t know why he was in that ward, I don’t know whether he was young or old. I don’t know whether he is still in hospital or whether his visit was as brief as mine often are. I can’t help but wonder if he was there as a result of a fit.

Lets do some deep breathing exercises to help you drift off says the physiologist. Really? You think deep breathing is going to drown out the noise? I want to laugh again. I follow instructions though and breathe deeply. I’m still fully aware of my surroundings, but I’m definitely exhibiting some of the ticks and jerks I have when I’m super-tired and trying to sleep. I can’t relax. The curtains open and I think to myself that she’s given up and the scan will have to be rescheduled. To my surprise, she announces that it’s over and that they did manage to record me sleeping. I will admit to being completely surprised by that. So, equipment removed from my head and chest, glue still in place, and I’m dispatched home. I sleep for a couple of hours and scared that if I sleep too long, I won’t sleep through the night I get up. I shouldn’t have bothered. I couldn’t sleep at all. Over-tired I guess.

After one particular episode, I woke to find myself secured to a bed in what turned out to be a psych ward. Tubes were in one arm and the other was so badly bruised it was barely recognisable. I had been in a very distressed state when I’d arrived at the hospital about 24 hours before. I had to be physically restrained by multiple medics such was my distress. I was fighting hard not to be there (probably because I didn’t want to have to wear a modesty gown). The fits were not stopping and I was injected with a drug that I react badly to and things declined. I was also bleeding from a gash on my chin which had happened during the initial seizure. Eventually they managed to control the fits and administer a sedative. When I came to, I hurt everywhere. The headache was just terrible. That dull, deep, stab of pain. My body was racked with aches and bruises. There were long, black stitches trailing from my chin. I was told what I’d done and felt pangs of guilt over it. I had no recollection whatsoever. This made me upset all over again. I hate the thought of others suffering for my epilepsy, especially those that are trying to help me. Tears flowed out of me for most of that day and for many subsequent days as I try to come to terms with who I am.

Feelings. We all have them. Some of us hide our feelings, some of us don’t. Some of us fight our feelings, some of us don’t. Some of us try to pretend we’re not feeling what’s beating in our heart and some of us proudly project the feelings in our soul, no matter what they may be. A lot of us hide certain feelings and increase the intensity of others deliberately in order to compensate. We may pretend we don’t feel a certain emotion or we may try to suppress some feelings, but we can’t hide from ourselves forever. At some point, sooner or later, the truth will out.

If feelings are free, then we are free to treat them in any way we wish. We have the freedom to choose how we react to a feeling, emotion, situation. Our own reactions are the only ones we control. My Gran used to say “better out than in”. She was using it in terms of, well let’s say digestive ailments, but it can be applied to so many other situations. Choosing not to suppress a feeling doesn’t mean you have to broadcast it to the world. No, simply acknowledge it, talk about it if you wish, just don’t deny yourself the power that comes with the freedom to feel.


Epilepsy and Hope…

Two months ago, one of my inner-circle was in a job, in her own flat, surrounded by friends who love her and living her life. Fast-forward to today. She’s out of work, she’s rented out her flat, she’s still surrounded by friends and family who love her and she’s about to embark on the next chapter of her life. She’s bought the ticket and she’s taking herself off travelling for the next year. She’s terrified and excited. She’s going to have the best time of her life. She will see friends she hasn’t seen in a long time and she will experience things that most will never. She’s brave, she’s hopeful and she’s pressed the f*ck-it button and she’s doing it. Personally, I’m absolutely delighted for her. I absolutely believe it really will be the best thing she ever does. The door to her office closed behind her but the hundreds of doors to a thousand different paths, experiences and people have just swung open, ready to accept her and her backpack.

I hope she experiences the phenomenal, she deserves to. I hope she reinvigorates the friendships with those she hasn’t seen in too long. I hope she takes all that she is and shares it with the world. The world will then be a richer place. The actions of this lady, give me hope.

Hope. A four-letter word. It’s an amazing feeling to experience. But, sometimes hope just isn’t enough. Sometimes, hope falls just a tad short. Hope is a good thing. But hope needs a helping hand, it’s not enough on its own. Hope needs action to become reality. Hope needs what my friend is doing. Hope needs that bravery and the willingness to try, to make an effort. That which you hope for can be that which you live (another four-letter word) but not without effort.

The actions of others gives me hope for a great deal of things, from the mundane to the sublime. But hope without action is destined to remain forever a wish. Aspects of our life are sometimes outwith our control, having epilepsy, having cancer, being hit by a drunk-driver for example. We can hope that these things don’t happen to us, but there is little we can do to prevent it. Hope, I think, in this case is directed at the actions of others. I’m not a scientist, but the actions of scientists to find a cure for the currently incurable, gives me incredible hope. I hope that the action of a drunken person handing their keys to a sober friend means one less devastating accident.

Having epilepsy gives me cause to live on hope. I hope that I don’t have a seizure today, I can’t fully control it, but I have done all I can in terms of taking the advice of doctors. I hope that if I should have a seizure, I don’t hurt myself badly or anyone else at all! I hope I can find it in me to live today as well as I can. I hope I don’t give myself up completely to epilepsy, depression, wine or chocolate. I hope I can find the courage to take action to turn my hopes into a reality. I hope I can find it in me to press as many of the f*ck-it buttons between me and my dreams as I can. I hope I can give hope to those who are struggling. I hope that I can be the friend, the relation, the partner that I want to be. I hope I am the friend, the relation, the partner that I think I am. I hope I can find meaning in having epilepsy, I hope I can continue to live alongside it and I hope that I can help find a route through it and share that with others.

We are on this earth for a nanosecond. 80 human years if we’re lucky, that equates to the blink of the eyelid of time. Some of us will be able to achieve greatness that’s recognised by millions in our lifetime and by millions more after we’re gone. Others of us will be the action that allows the greatness of others to become more than hope. The people who find the cure for cancer are driven by the cancer-sufferers’ hope to find the solution. The names of those people will be written down and celebrated for decades to come. The names of the hopeful will be forgotten by all except those who love them or were touched by their hope, but without them there could be no cure. The life of the celebrated is worth no more than the life of the hopeful.

We are all here on earth for such a short time, that it makes no sense not to be hopeful. So live with hope in your heart, action on your mind and be happy. Life’s too short and fragile.


Epilepsy and Bears…

I hate that I can’t remember the period immediately preceding and immediately after an episode. I hate that my memory has gradually become worse. I hate that often people don’t believe me when I say my memory is terrible. I love that I can remember my moments. Although I guess I don’t really know what I’ve forgotten!

The first time I got really upset about my memory was after the second time I had a fit in my current workplace. I forgot the birthday of my oldest and one of my dearest friends. It was the first time I truly linked my memory loss to having epilepsy. I was devastated that I forgot her birthday. She was completely un-phased by it. It caused me to go through a period of trying to think about what I might have forgotten about, without knowing what it was that I thought I might have not remembered. I was driving myself towards madness.

On the whole, people are kind. My inner-circle don’t chide my lack of remembrance of that which is important to them. Some of my friends may mutter that I’m just looking for an excuse, but I don’t think they believe it to be deliberate, they’re just feeling slighted and I can understand that. There are those who truly can not comprehend that I can’t remember a conversation that took place a few days ago, but that I can remember moments that I had decades ago.

A doctor tried to explain my memory-loss in simple terms. He said there is only so much space in the brain. He said that when the brain is becoming over-loaded, it tries to make more room. One of the first thing the brain shuts off is memory and more specifically the short-term memory. He said, sometimes it gets shoved into a holding area and it will, eventually, come back into play and that sometimes it doesn’t. It used to be, for me, that my memory would come back. Then it become that chunks came back, then fragments and now, it seems to me, that very little comes back. Maybe it’s because I’m turning too much of my brain over to worry. The older I’m getting, instead of gaining more acceptance of that which I can not change, I’m harbouring more worry and resentment. And that, takes up brain-space.

So, in order to try to combat this loss of memory, I try to write everything down. Well as much as possible anyway. Birthdays, for example, are logged in a calendar, even those of the people nearest and dearest to me. But, best will in the world, I can’t write everything down. Apart from anything else, I don’t know what conversation or snippet of detail I’m going to be asked to recall in a few weeks/months time. So short of recording everything I do and say, it’s inevitable that I’ll forget things. Do I forget everything that’s happened in the short term? No, absolutely not. But it is harder for me for a few weeks or months following a seizure. That’s when my brain is at capacity, apparently, and memory is shelved. It would seem though, that some of those memories are on the high shelves and are destined to remain there.

When someone starts a conversation with “do you remember that time…”, or words to that effect, I go into panic mode. If I have some memory of the event being recalled, then I panic that I’m not remembering it correctly and if I don’t remember it, then I panic that I’ll hurt the feelings of the person I’m talking with. Either way, I panic. It’s as if I’m damned if I do remember and I’m damned if I don’t! If I say no, I don’t remember, I feel horrendous inside. I feel like I’ve belittled the memories of the other person. Like, it was important to them but not important to me. Just a terrible feeling of guilt, anger, worry that my memory is getting worse and anguish at the pain I may or may not have caused.

Yet, for my moments or episodes from my childhood or my fears, I remember them in glorious technicolour. I can replicate the feelings, the sounds, the smells, the people associated with them. I can invoke those memories to the point of believing its a current affair.

A few years ago, I was camping in the forests of Northern California with friends. We had taken the ski-boat, the tents, the BigAss grill, the wakeboards and the dogs to Bullards Bar and were spending the week camping, boarding, drinking, laughing, eating and generally enjoying being with each other and having fun in the sun and in the water. It was something we did every summer for a good few years, before life got in the way. Those were the days before bear-lockers were introduced at the campsite and being in the forests, there were plenty of bears and other assorted wildlife to keep the campers company. Every year I’d camped there, bears would come through the site we were at, often we didn’t see them, but heard them.

Anyway, so, we were following our usual ritual of getting out on the water early and coming back to the camp early afternoon. This one day, it was hot and sultry and very quiet. The other camp areas were deserted as their occupants were still hiking or frolicking on the water. The air was heavy and the scent of foliage hung all around. The two guys in our group took the boat to get more fuel. My friend took the dogs into one of the tents for a nap and I sat at a picnic table playing solitaire. Everything was still. A couple of birds attempted to sing, but the atmosphere made them sleepy and the sounds trailed off. Something pricked at my consciousness. I turned my head slowly to the left and then did the classic double take. A bear had emerged from the trees with two cubs and was approximately 6 feet from my seated position. The two cubs shot up two trees and the momma stood her ground. I felt remarkably calm, and something, instinct, told me that I had to look at her, but not stare, so she knew that I knew she was there. I knew that bears roamed and foraged in this area, but I didn’t know what I was supposed to do. I called for my friend. I called for her to stay in the tent, but there was a bear and her two cubs eyeing me up and what should I do? She told me to back away slowly, I tried but couldn’t get my legs out from under the picnic table. I could hear my blood in my ears. I could feel the adrenalin coursing through my body and I knew that remaining calm was the only way I was going to get out of this. My friend is still in the tent, and I eventually extracted myself from the bench and started to back up. Straight into a tree. My friend softly called me to start making a noise. So, I started a conversation with the bear about the weather. How hot it was and how we both knew the other was there and that wouldn’t it be great if there was a bit more of a breeze to cool the air….yep, I was chatting to a bear that, on all fours, was about the height of my chest. I’m surprised I didn’t offer her a cup of tea! Well, she obviously decided that I was a complete lunatic, but not a threat, she called her cubs and she ambled away down a previously unseen trail.

My friend came out of the tent with the dogs leashed. And in an incredulous tone that I could never replicate said “did you really just chat to a bear about the weather??” At that point the men-folk reappeared with the truck and the boat. One of my friends is a park-ranger, he was amazed the bear didn’t charge me. He said the danger of a bear charging is increased enormously when cubs are present because of the mother’s desire to protect them. I was very very lucky. More friends joined us at the campsite that evening. The event was retold and I earned my Californian nickname – the bear-whisperer.

I had more than my fair share of jack and coke that night.