1

Epilepsy and Travel…

I’m writing this sat on a park bench, bathed in beautiful sunshine in Kraków, Poland. I am alone, I am epileptic and I am unafraid.

I’m looking out over a flat playground where only the birds are laughing. It’s a delightful sound. Soon it will be replaced by kids, but now I’m content to listen to the sounds of nature. Content and hopeful, I’m reminded again of how lucky I am. Of just how many of these moments I’ve experienced in my life. Having epilepsy has in no way diminished my life. I simply won’t let it. Yes, it gets me down sometimes, yes I feel afraid sometimes, yes I feel depressed sometimes. None of that is unique to having epilepsy.

The day after I landed in Kraków, I headed into the Tatra mountains which form the natural border between Poland and Slovakia. My intention was to stay in Slovakia for a couple of days before returning to Kraków. The weather was terrible. Wet, foggy, stormy and the stunning vistas I was hoping for were there, but hidden from view, so I returned to Kraków the same day. However, I was still able to ride the funicular up to the top of Gubałówka mountain which lies above the small town of Zakopane on the Polish side of the border. Drinking grzane piwo and buying tourist tat. Grzane piwo is a mulled beer that’s served hot, in the same way as mulled wine. I’ve never seen it anywhere else, but it’s popular here. Having epilepsy does not stop me from trying new things, seeing new places and experiencing wonder.

I’ve talked about ‘moments’ before. The vast majority of mine have happened while I’ve been travelling. It saddens me that sometimes a diagnosis of epilepsy is not accompanied by a strong reinforcement that it is not the end of the world. It is not a case of ‘abandon all hope ye who enter here’. Epilepsy becomes part of your life, in much the same way as any chronic condition does. Epilepsy does not remove free will. Epilepsy is not the end, merely the beginning of a new chapter and the chance to discover a strength within that some others never find, because they don’t have to. I’ve used my epilepsy to motivate me. I’ve taken those wayward electrical charges and plugged them into my soul. They light up the areas in my soul that crave wonder, that crave travel, that crave moments. Yes, sometimes the lights go out and I feel the darkness, the fear, the terrible crushing feeling around my heart. But, when the lights begin to come on and I can see more clearly, then life comes into focus again.

One of my favourite travel moments, if it’s at all possible really to rate moments, was when I did a tandem skydive over Lake Taupo in New Zealand. Me, my boyfriend and my bf’s brother all suited up, in a small plane, 12,000 ft in the air, each of us strapped to an instructor. My turn. Sat on the instructors lap, legs dangling outside the plane. Just rock forward he said. The adrenalin rush at that split second as we left the plane and entered that point of no return was nothing short of euphoric. Fear was replaced by freedom. Complete freedom from everything. Nothing mattered. Why would it. I laughed, giggled and waved at the guy videoing the jump. Happiness, freedom, adrenalin, euphoria rushed through every single fibre in my being. I felt truly alive. Cobwebs were being ripped from my mind as I fell through space. Time didn’t matter. Why would it. Epilepsy didn’t matter. Why would it. It was just me, being. When we landed, I was jumping up and down, I felt free and I didn’t want that feeling to end. I wanted to fly again. The feeling is addictive. I think I’ve been trying to recapture those brief moments of pure, unadulterated joy ever since. Free as a bird. I think that jump enabled me to feel what it’s like to live in the moment. The past doesn’t matter, it’s done. The future doesn’t matter, it will take care of itself. All that truly matters is the moment, the present.

I’ve never experienced a seizure while I’ve been on a trip. I wonder if that’s because I don’t feel stress travelling, only curiosity and wonder. I’m glad that I was encouraged to believe that epilepsy could be part of my life without it taking over my life. I’m grateful for the people I have in my life who support me and who provide the network that catches me when I fall.

4

Epilepsy and Fear…

I don’t feel good. I’m nervous and scared with no real reason. The slightest bit of negativity that enters my life sends me into a spiral of self-doubt, self-hatred, loneliness and depression. It feels like the world hates me and I cry for virtually no reason. It sucks. I know the EEG next week is weighing heavily on my mind and I suspect that’s where it begins. Where it will end, I have no idea. This is what epilepsy does to me sometimes.

My thought process is broken at the moment. I can’t focus and I feel anxious. One thought enters my mind, it could be anything from the mundane to the meaning of life, but it pingpongs in my head. It feels like I’m chasing the thought around my mind and I just never know where the thought is going and if I can catch it. It fades and is replaced by another thought, but again I can’t keep it in my head in one place. Anxiety. The feeling of loss of control. I get upset and fearful. The more upset and fearful I become the faster the thoughts bounce around and the less clear and focussed they become. Work becomes harder because I struggle to stick to a process or plan I’ve made for myself. Tasks requested by others aren’t so much of an issue because they come encapsulated with a start point, an end point and usually a pretty standard process in between. Muscle memory, if you like, takes over and I can perform.

I’m questioning my life. Not life itself, but my life. What I’ve done, what I’ve not done and how much of an impact fear has had on it. I’ve touched on this before. I don’t know how much having epilepsy has impacted my fear. I can’t always separate the two, yet sometimes it feels like they’re miles apart. What I do know is that fear begets anxiousness, anxiousness begets stress, stress begets sleep disturbance, sleep disturbance coupled with stress begets seizures, seizures beget fear. My circle of life. Fear and epilepsy are inextricably linked for me, but neither is wholly responsible for the other.

Having thoughts constantly bouncing around in my head is draining. These are not the creative thoughts that some people draw on to create the exceptional. I sometimes have those types of thoughts too, but they are easily distinguished from the ones going on now. The creative thoughts transform into the light, the bright, the uplifting, the humorous. These thoughts I can’t catch and they’re taking me over to the dark side of depression. I know it’s coming, it’s here already. It lies latent in me always and it’s me that gives it life. Depression is different for everybody too. Im a functioning depressive if you like. I’m the one with the smile and the laughter and the dead, numb feeling inside. I’m sure my eyes probably tell a different story, but I don’t know. I can’t meet my own eyes in the mirror when I’m depressed.

I bury my pain. I find it hard to articulate and I find it hard to talk about it. I think, by now, those of you who read this regularly, know I suffer with depression. I don’t find it hard to admit that I suffer with depression (any more), but I do struggle to use words to describe the feelings and the reasons under-pinning it. I don’t understand the feelings. I’ve talked to counsellors, doctors etc, but I find that whole process equally terrifying. It’s the feeling that I’m being be judged. That the way I recall incidents and feelings is incorrect and somehow untruthful. The feeling that someone is looking at me with pity. I feel sorry enough for myself without someone else adding in their pity to the mix. The biggest part of depression for me is the feeling of loneliness.

Loneliness is a huge subject for me. I’m happy in my own company, yet I sometimes struggle to be alone. And the times when I really need people around me are the times when I shut my friends out, refuse to socialise, cancel at the last minute and generally let people down. The guilt I feel about that is immense and yet I can’t seem to stop it. I guess it seems like I don’t care, like I’m being selfish and am way too wrapped up in myself to give a passing thought to what someone else may be going through. No-one has ever said those things to me, but I convince myself that’s what they’re thinking and I can hate myself even more because now I’ve given myself a tangible reason for self-hatred regardless of how tenuous that thought process is. Loneliness is awful. Scary. Locked in your own mind, with only the pingponging thoughts for company. It’s a dark place. Some don’t understand the loneliness, they think all you need to do is be in the company of others, but it doesn’t work like that for me.

My brain is my jailer and my refuge. It causes me to experience physical pain through the fits and it lets me through the door of darkness into the recesses of my mind where I’m running but never arriving. My brain takes me on a journey everyday. The mundane and the magnificent. The ordinary and the extraordinary. It tenderly nurtures my hopes and dreams and at the same time feeds my fears. My brain, my mind, my soul . All one. I can retreat into myself any time and frequently do. I can hide in myself and surround myself with the beauty, love and the knowledge that I so desperately want. I don’t talk about my dreams or my hopes. I’m scared that makes them less attainable. One belittling or sarcastic comment will send me scuttling to hide in the dark where my secrets are my own and my dreams can’t be scorned.

It’s hard to be friends with a person who suffers with such chronic self-doubt. It’s hard not to feel slighted. I understand that because of the people in my life who sufferer to a lesser or greater extent with feelings of depression. It’s often impossible to say the right thing because there is no right thing to say. It is what it is. Everyone has their own coping mechanisms, and some are still struggling to find theirs. I don’t take it personally when a friend I know is suffering retreats from me, I try to make sure they know I will still be here when they come out the other side. I hope my friends understand that part of me and aren’t harbouring some deep resentment because of the way I sometimes am. They couldn’t make me feel worse than the way I already do because of the weight of guilt pressing on my chest.

I had a skiing accident when I was 15. I didn’t feel fear at that time. The world was my oyster and I enjoyed it. That school trip to the Alps was a turning point for me in so many ways. The ski instructor said I shouldn’t have survived. I got back up and carried on though, oblivious to the switch that had just been flicked in my brain. There were a couple of bruises and a few aches, but in all honesty the whole group probably had that! The epilepsy gene was triggered though and the seeds of fear and self-doubt were unknowingly planted in the fertile mind of a teenage girl.

The dark is beckoning me. My anxiety is feeding the blackness. Feeding it makes it grow and that makes me more anxious. I picture the dark as being a super-shiny, viscous liquid that has a shape like a box, but has tendrils snaking from it that wind their way towards me, reaching out ready to pull me closer to that onyx box of blackness. The deeper the fear, the darker the box. Yet, there’s still glimmers of light. I’m going away for a few days next week and I know that the peace I find when I’m away is glorious. It’s a chance to hit the reset button hard, a chance to just be. A time when I really do enjoy the solitude.

Why can’t I feel that peace here, in my day-to-day life? Why do I do it to myself? Why don’t I just snap out of it? Why can’t I just snap out of it? I don’t know. If I did know, believe me I’d click my fingers and be free! It doesn’t work like that though. If you know someone who is suffering, please don’t ask them that question. They don’t know either. They wish they could. Just let them know you care and that you’ll be there whenever.

0

Epilepsy and DIY…

Not long after I bought my flat, my Dad and the dog came round to help me do some bits and pieces of DIY. I asked my Dad to remove a door to a cupboard so I could have open shelves instead, make the room look bigger I thought. So, Dad is there, saw in hand, in order to cut said door down into smaller pieces, and I have a fit. I have no recollection of this at all. Imagine the scene. My Dad has a wood saw in one hand, a hardwood door balanced using the other hand, the dog is going crazy circling me and I’m having a fit on the sanded, hardwood floor. What would you do? Well approaching me with a saw in your hand while my protective Boxer is in guard mode is not the best idea, but you have to remember that Dad was winging it somewhat. Putting the saw down didn’t appease my dog. He flatly refused to let my Dad anywhere near me. This dog held my deepest fears and hopes. He guarded me with the same ferocity as he guarded my secrets. Once I’d finished seizing, my dog calmed down and allowed my dad to move me to the sofa. My dog was in protect mode, not attack mode. No need to go to hospital, I wasn’t badly hurt and I came round pretty quickly. Anyway, the paramedics have enough issues with me, not sure how they would have coped with Rusty!

It turned out Rusty had been very watchful of me that day. I don’t remember, but he had stuck close to me and was obviously extremely protective of me while I was unable to look after myself. Animals are far more tuned into their surroundings than we, as humans, are. Rusty knew something wasn’t right and he stuck close. Having said that, my cats? Not interested…

My Dad hates the thought of me using a stepladder. He worries incase I have a fit while I’m on them. I’ve not looked into the statistics, but I suspect I’ve got more chance of just falling off the ladder than I do of having a seizure on one, but he worries none-the-less. I’ve wasted a lot of my time being fearful. Afraid of the day I never saw, as it was put to me. I honestly don’t know how much of that fear can be attributed to my having epilepsy though and how much isn’t. People close to me worry about me being alone in case I have an episode. I don’t. People close to me worry about me hurting myself badly during an episode. I don’t. I am afraid of very little of the physical side of epilepsy, as I’ve said before I’m more scared of the affect each episode has on my emotional state. Yet, my emotional fears aren’t restricted to epilepsy. They’re much more wide-ranging than that….I guess I’ll get to that. I think my emotional state is heightened after an episode and actually probably for a few days before, but I don’t think that having epilepsy is the main reason why I sometimes struggle with my emotions. I guess what I’m trying to say is that I think I would probably tend to the dark-side anyway, regardless of whether I suffer from epilepsy or not.

I’m going for another EEG next week. They don’t hurt, basically just have a bunch of electrodes glued to your head and answer a series of questions or perform basic functions while the electrodes measure the levels of activity going on in the brain. When I first would have these tests, I used to be terrified to answer the questions incorrectly. I was scared the readings would get all messed up and as a consequence I’d end up being declared mentally unfit and be sectioned. At the time I thought that it would mean I would end up an asylum of some description. Scared of the consequences of being forced to look like a sci-fi version of Medusa and being so nervous that I’d maybe close my eyes at the wrong time or blink at the wrong time and be forever labelled as “mental”. I know that isn’t the case now, but I still get very upset by them. It’s not the process of the EEG that makes me upset. I think it’s more what they represent. They usually signal the beginning of an intense battle in the war I wage with medication. The war is a continuous one, the battles are often long and protracted, violent and bloody. I can already feel the tension building in me because I know my brain will be scanned next week. It’s already becoming a battle to remain calm and outwardly normal. This type of fear is irrational apparently. I’m already getting the tight sensation in my chest when I think about it and I know that tears are never far behind.

I’ve been thinking about how my life might be if I didn’t suffer with epilepsy. I don’t drive because I’m hard to control with medication, so I can say that I would probably have a wee car and not have to put up with being reliant on public transport, peasant wagons or the goodwill of others. There’s a good chance I wouldn’t have to go for medical check-ups as often. I might have got my PADI certification. I’ve mentioned before that I have a love for sharks. For as long as I’ve been fascinated by them, I’ve wanted to enter their liquid world and see them up close. I’ll admit for the longest time, I believed that I wouldn’t be able to do this, as my epilepsy prevented me from deep-sea diving. Not so. I was able to do a cage dive with Great Whites in Shark Alley off the coast at Gansbaai, South Africa. I watched as a 4m Great White glided past me a mere metre away. I looked into those menacing black eyes and saw nothing but beauty. On the boat, I watched as lean, grey, majestic shark broke the surface of the water to lunge for fish. A dream come true, an experience I will never forget and most definitely one of those many moments I’ve experienced.

I’m still going to climb ladders, I’m still going to be fascinated by sharks, I’m still going to live life.

0

Epilepsy and Moments..

I sometimes forget to stop and smell the roses. This is not just because I have epilepsy, it’s something that the vast majority of us adults do. There’s nothing wrong with my olfactory system, my misfiring brain got that part right, but I have a tendency to leave my achievements unacknowledged and to forget the times that I did get up, get out and do something wonderful. I don’t think it’s so hard for most children to do. Every time they step outside the door a child can feel exhilaration. At least they would if they’d been encouraged to go out and play rather than be praised for their ability to use a smartphone!

I’ve had a lot of wonderful moments in my life. I know I should choose to remember them rather than dwell on something that is past and over. I’ve talked a fair bit about choice, so maybe it’s time to start practising what I preach! I chose to not let epilepsy stop me from doing anything. In some ways I’ve channelled the frustration at having epilepsy into an energy that’s caused me to get up,dress up and show up, as the saying goes. A bit like sticking two fingers up at epilepsy and saying “I can and I will. So there!”

Friends of mine got married last weekend. It was a small, intimate, beautiful occasion with the bride wearing flowers and ribbons in her hair. Most of the guests had travelled from overseas to be a part of their day. That’s how much they’re loved. I was included in that and count it as a time that I got up, got out and was part of something wonderful.

So, I resigned my job, packed a 75litre rucksack including wedding outfits for 2 different weddings in 2 different hemispheres and only 1 week apart, I took a pile of anti-convulsants, a letter explaining why I was carrying so many drugs and I went travelling with my boyfriend. We swam in the topaz blue waters of the South Pacific, we skydived over Lake Taupo, we kissed in the middle of a tropical downpour, we trekked across a treacherous ridge through a tropical jungle (I whinged a lot of the way until we got to the beautiful waterfalls at the end), we skied in Christchurch, we stood in a forest of Kauri trees on one continent and drove through the trunk of a redwood tree on another. We watched the sun rise over Lake Matheson and the sun set over the beach and surf of a South Pacific paradise.We touched a glacier and watched the All Blacks do the haka on home turf. We did the foxtrot at one wedding in Cambridge, New Zealand and the following weekend we swing-danced at a wedding in a vineyard in Northern California. We gambled in Las Vegas and flew over the Grand Canyon in a Cessna during a lightening storm. We toured the Hoover Dam and we marvelled at the colour of the blue of Lake Mead. Just a few of the wonderful moments I’ve had in my life. Moments, experiences I would never have had if I hadn’t chosen to accept epilepsy as part of my life, not for it to be my life. I’ve had many more wonderful experiences…but I guess I’ll get to them.

Some people have suggested to me that I’m being irresponsible doing some of these activities. That I’m putting myself and others in unnecessary danger. The choice (there’s that word again) to do something, anything is mine. Where others are involved, such as with the skydiving, then I ensure they know about my condition and they can make an informed decision as to whether that’s something they want to take a chance on. I’ve taken responsibility for my life, my actions. I don’t not cross roads in case I have a fit on the white line, I don’t not leave the house in case I have a fit al fresco. Why should I place limits on my life, because of something that may not happen? Once again, I recognise that some sufferers have it considerably worse than me, and that what I choose to do would be an inappropriate action for them.

Around 12 years ago, I was asked to be a bridesmaid to a very close friend. A friend who’d visited me in hospital and helped put me back together on more than one occasion. I was there when she chose her wedding dress and I was thrilled with the emerald green she went on to choose for her bridesmaids colour. I had a seizure the day before her hen weekend was to start. If the weekend had been in Edinburgh I would have been able to go for a part of it, but it wasn’t it was hours away in another city. I explained to her that I couldn’t go. I felt that it would be too much for me and I didn’t want her worrying about me the whole time she was meant to be partying as I knew she would. She seemed fine, disappointed but fine. A couple of weeks later, the week before the wedding she came to see me and said she didn’t want me to be her bridesmaid anymore. She didn’t want me to have a fit at her wedding. I accepted her decision with as much grace as I could muster, hugged her and said I understood. I didn’t. Apparently it was still ok for me to go to the wedding as a guest but just not as part of the bridal party. Obviously a guest being taken ill at her wedding was more acceptable. That makes me sound bitter and I’ve tried hard not to be, but I didn’t understand why my closest friend, who’d stood by me and my condition for many years could cut me out so brutally. That’s how I saw it. I guess she saw it as me letting her down at her pre-wedding drunken weekend. I didn’t go to her wedding. We didn’t see each other after that for a few years. I tried to get back into contact with her, but it was clear our friendship was over. I wonder if I was wrong not to go to her hen weekend. Probably? Possibly? I really don’t know, I felt I was doing the right thing because I was scared my sheer exhaustion and hence lack of enthusiasm to go clubbing and drink to the wee small hours would ruin her weekend. I have lost friends through having epilepsy but none have left such a hole as she did.

I’m glad to say I’ve been accepted at more weddings than I’ve been rejected from.

One day when she’s old enough to understand, I’d like to sit down with my friend’s little girl, S, and talk with her about all the ways she can live a wonderful life despite her “shakies”. Encourage her to live out her dreams and be inspired by the wonders of life around her. I’d actually like to sit down with my non-epileptic god-children, my niece and a whole host of other people, young and older alike, and have the same conversation! It’s ok to feel the fear that comes with having epilepsy. It’s not ok to feel controlled by that fear. And that’s not just true for epilepsy sufferers.

Turning my life into a mere existence because I have epilepsy is not a viable option. I have too long left to live just to exist. Vitality, vigour, energy, joy, wonder. Life.

0

Epilepsy and Firsts…

So, it was Mr Marshall’s English Literature class and I was 15 yrs old. It was the first day that I did my paper-round. It was first day I had a seizure. The first day of the longest battle of my life. The first day of the rest of my life.

My only memory of that inaugural day of my life, is being in the ambulance chair, being wheeled backwards into the ambulance and seeing a sea of faces at the window of the assembly hall. All clamouring to see who is being taken away in an ambulance. That’s all I can actually remember of that day. Apparently, I stood up in the middle of the class, made strange moaning sounds and fell to the floor to begin the battle that rages in my brain every single day. Other teachers were called, the ambulance was called, my mother was called and my 17yr old brother was presented with my shoes, schoolbag and the news I’d been rushed to hospital. At that stage in our status of being siblings, we weren’t close. We were both teens and I didn’t realise how much I adored my big brother until he left for university a year or two later. That’s by-the-by, knowing him as I do, I can only imagine how scared and upset he must have been that day. People, other than me, being in possession of my shoes and bag has become a recurring theme in my life.

I’ve never, ever asked anyone how they felt that day. Not my family, not my friends, not the dog. No-one. And I’ve only ever told the dog how I actually felt. Animals can sense epilepsy. Another dog proved that to me in my early twenties, I guess I’ll get to that. I got a fantastic Get Well Soon card signed by classmates and teachers. I still have it 27 years later. I sometimes look at it, but I don’t really know why I kept it. I’ve been very open about my epilepsy for much of my battle, but it’s only very recently that I’ve started being truly honest about it. With others and with myself.

My openness about having epilepsy began because it was a way that I could help reduce how much others worried about me. It was a way I could talk about having epilepsy but keep it practical. What to do, what not to do etc etc. It evolved into poking fun at myself and the condition. It was a way of body-swerving my feelings, my emotions and it helps soothe others. It also helps ensure that those around me are less likely to panic if I start to seize, because they know it’s not outwith the realms of normality for me. I’ve lived with the threat of having a seizure for 42 years, blissfully unaware of that fact for 15 of them. I’ve lived with the consequences of having epilepsy for 27 years. I have the physical scars, but as with most scars, the deepest ones are emotional. I hate having epilepsy.

I’d hand my brain back and ask for a refund if I could. I can’t. Firstly, because I wouldn’t know where to return it and secondly because it may be damaged, but it’s bloody good at other stuff. The fact remains, parts of my brain malfunction. I know the terror that comes with that. I feel the terror. I know the terror that comes with the knowledge that having epilepsy could one day kill me. I spend chunks of my life terrified of my brain. There are times I cry myself to sleep through the sheer frustration of having epilepsy and being under the influence of it. I can control many things in my life, but not my own brain. My brain controls my brain; how mind-blowing is that! My brain does this to me, it causes me so much physical pain and then compounds it by giving me the ability to feel emotional pain about it too! How is that fair?? Well, it’s not fair. Plain and simple.

So, it isn’t fair. But I still have choices. I can give over my life to fear, depression, anger, bitterness, terror, hatred, self-pity, self-hatred, helplessness, loneliness, frustration or I can acknowledge that having epilepsy causes me to experience all of those emotions, but that life is worth getting up each day and carrying on for. Giving up is the easier choice. I feel like doing just that on a regular basis. After my latest episode, I wanted to give up. I was so tired, not just physically, but mentally exhausted by the battle. I was ready to let epilepsy win the war. Other parts of my life were causing me stress. People were judging me on things they knew nothing about. That stress is one of the factors that put me in hospital that day, because my epileptic brain gets stressed out by stress! An apparently misplaced sense of loyalty prevents me from dealing with the cause of that stress, but I sense for the sake of my health that is going to have to change. Anyway, I digress. Sort of. Epilepsy was taking the upper-hand. The depression was deep, inky black and consuming me. Still I smiled and joked because that made others feel better and less afraid. I could feel my being, my inner-me, my soul if you like, dying. The will to keep going was seeping out of every pore in my skin. Then the doctors deemed me fit to go home (love the irony of the use of that 3-letter word in the medical world).

Physically I was improving. Emotionally I was dying. I went home. Closed the front door after my parents left. I’m alone. No-one to make me a cup of tea. Did that mean I wasn’t going to have a cup of tea? No, it meant I was going to get off the sofa, go into the kitchen and make one. I chose to make tea. I chose to have a shower and get into my pjs. I chose to watch crappy tv. I chose to eat chocolate. I chose to keep going. Yes, I felt scared, depressed, deflated, exhausted and downright pissed off that this was happening to me again. And maybe it was just sheer habit that caused me to keep going, I’m not 100% sure about that. I know I didn’t have some kind of glorious epiphany. But be it consciously or sub-consciously I lifted my chin and pointed it forward. I find myself here, now, writing this to help me and to help, hopefully, others see that there is a choice. There is always a choice.

Today is the first day of the rest of my life.