Growing Into My Epilepsy

Like thousands of other New Zealanders, I developed epilepsy in my mid-teens. Like thousands of others who had the same occurrence, it was received by me, my parents and those few people who were told of it, as a shocking disaster. I was shy, embarrassed and reacted by ignoring the epilepsy as much as possible. I was fortunate in having loving, supportive parents; but they joined in with this strategy of not talking about epilepsy.

My epilepsy is severe in nature; it manifests itself as grand mal seizures that occur without warning, and it seemed with no specific risk factor triggering them. I was grateful that the seizures occurred either at night or early morning. This allowed me to keep my condition largely unknown to others.

I responded well to medication, and my seizures were reasonably controlled, occurring only every few weeks.

Adventure, exploration and mountain climbing were the ambitions that filled my teenage brain. My father had been a genuine explorer, traversing areas that were still blanks on maps, and in the Amazon even into areas not occupied by indigenous people. I wanted to be a mountain climber of high ice faces and, for a job, I wanted to own a high country sheep station. Epilepsy did not fit into this plan, nor with my self-image, so I simply pushed it to the back of my mind.

A hut on a tramp into the Harper River; as a teenager I built a self-image of being independent and an outdoorsman. In truth I was dependant on my medication.

Somewhat surprisingly, my “ignore it” strategy seemed to work. I lived in Christchurch and took part in as many sports involving the outdoors that I could fit into my time, from rock climbing, long and complex tramps into the mountains, middle distance running, orienteering, even to dinghy sailing. As my seizures occurred in the security of my home, only one or two friends knew of my epilepsy. When people used the phrase “he’s having a fit” to describe another person’s over-reaction to an event, I felt a deep inner dread.

After ending school, I went to Europe and on my own tramped into rugged and remote areas. I climbed many of the more modest peaks in the Alps.

And what of my epilepsy? Well, I would have my seizures conveniently away from the action of the day, privately in my tent, perched on a high plateau in the heather. Next morning I would feel exhausted from the seizures, but push myself to rise and boil the billy ignoring even my sense of shame.

It is hard to know now what my parents thought of my mountain trips. I suspect my father considered it important to allow me to follow my passions; in any case so long as I took my medication nothing more could be done. He was certainly not going to stop me from enjoying the natural wonders of the Earth.

Overseas I had enjoyed working on farms to pay my way, but I realised the ambition of owning my own high country station was a fantasy. Even the farm ballot system for settlement of new farmers onto marginal lands was being phased out. I almost enrolled to study geology, but became excited by the idea of being a litigation lawyer. Being a law student allowed me plenty of time in the mountains, and following graduation in law I undertook a Master of Science degree, mainly because prolonging student life would enable me to go on playing in the mountains. As often as possible, this play was on my own, so that my mornings and evenings remained private.

Mornings and evenings were not as private as I grew older and I wanted to share those times with girlfriends. I turned over and over in my mind when I would have to tell a girl that I had epilepsy. To me, this meant I would then be a different person to them; an epileptic who had fits. The problem was worse the greater was my fondness for a girl. This led me to sometimes walk away from the issue altogether, leaving a mystified girl in my wake. I had a similar problem with respect to flatmates. The fact that no girl or flatmate ever disappeared over the horizon when I told them (or they discovered for themselves), did not register with me that others might not view my epilepsy as I assumed.

Anke, a German tourist I met deep in the remote Kahurangi area. Within a week we had a strong friendship, but I moved on, as I didn’t want to tell her I was an epileptic.

All this time I felt I was building within me a bigger and bigger lie. I was not the rugged Canterbury outdoorsman, or a potential leader and innovator; I was a vulnerable epileptic. My “ignore it” strategy did not remove the existence of my epilepsy. I judged myself as living a fundamental dishonesty as I was not the person that I portrayed to others. It was an unusual dishonesty though, as I had no conscious experience of my seizures; they occurred without warning, and on recovering, I knew nothing of them. I could only assume I’d had a seizure. I haven’t even seen what a grand mal seizure looks like. This lack of active awareness of my epilepsy made it easier for me not to acknowledge it.

Then began my career in Wellington, working at The Treasury, later practising law, before returning to the public sector and eventually becoming a consultant and, in that role, being appointed the Chief Crown Negotiator for Treaty Settlements. During the bulk of this time, I maintained my “ignore it” strategy, which on the whole worked for me.

Occasionally, but fortunately quite rarely, I would have a seizure during inconvenient hours. Those I worked closely with came to know of my epilepsy. A few of my staff evolved into also being my “protectors” and dealt with these embarrassing occurrences. They could not, of course, protect me from my ongoing fear of being discovered by having a seizure at the wrong time and place. I tried not to think of this.

On a minute by minute basis, one feature of my epilepsy was always with me. This was that either the condition itself or the very high doses of medication I was on, meant I had an appalling memory. Most ‘phone calls, and meeting people in the street each day, were difficult, as I would not have a clue who they were. I worked up strategies to hide my ignorance that enabled them to continue to talk on until I had enough pointers to work out who they were, or at least who they worked for. But often we parted after a friendly conversation without me ever knowing who they were.

Ignoring and not being open about my epilepsy — hoping seizures wouldn’t happen (Ross on left).

As a negotiator, networking with people is a fundamental skill and essential activity. But my memory is so poor, I can’t recall books, films or overseas holidays I’ve been on, even a few weeks later. I sometimes think I’d love to climb a certain mountain, only to find in an old note book that I have already climbed it. I was recently surprised to learn I have holidayed in Samoa. But my strategy of “ignore it” made me master of covering up my memory loss and I practised deception of this kind in many situations. None-the-less, I proved effective and able in my work.

The strategy finally failed when my epilepsy took a turn for the worse during a process of transition onto new medication. I had eight grand mal seizures within twelve hours in a life threatening experience. On discharge from hospital, I threw myself back into my work, but I was no longer having seizures at my “convenient” times. I was negotiating a very complex set of inter-twined claims, and I learnt that the lead negotiator on the other side of the table also had epilepsy. In what is now seen by me as an amusing episode, I’m told he suddenly fell to the ground with a grand mal seizure and a few moments later, across the table from him, I did the same.

My health eventually had to be faced up to, as I could no longer represent the Crown in negotiations with the ongoing threat of seizures. I needed time-out to stabilise my body. With no income for the foreseeable future and a mortgage, it became necessary to move the family from our home. I assume matters must have been pretty grim as I could not work for over 5 months, but I recall little of this time. That period passed as my medication became more successful.

During this time, my attitude to my epilepsy changed, thanks in large measure to discussions with those close to me. An acceptance of two matters were key to this change occurring; first, that it is unfair on those around me to expose them to the shock of a sudden seizure, without the knowledge of what it was and what to do, and second, that epilepsy was not a matter to be ashamed of, it was within me, possibly part of my DNA. It did not arise from anything I had done — it was perhaps more a matter of chance that epilepsy had come to me. For these reasons, I decided I should accept it as part of me, and I was confident that those I worked with would not judge me solely on my medical condition.

Once I was working again, and very tentatively at first, I told my team about my epilepsy, what would happen and what they should do if I had a seizure. I did this in a very low key, conversational way. Those I told chatted back to me about it and asked questions. It was remarkably easy to “come out” and this took away so much dread that one day they would find out about me. Gradually, I told people in an increasingly expanding circle. A few times when explaining to someone of my epilepsy they would very sheepishly reply that they too had the condition. Then we would engage in a bizarre banter as to who could claim to have the more severe seizures. Now I sometimes just casually drop the fact of my epilepsy into a conversation because it is vaguely relevant and interesting. I can even excuse my lack of recognition of people, if I can’t work out who they are. This openness does not impact on being able to successfully carry out my professional duties.

By now, in my early fifties, I had been feeding my adventure spirit for some years by climbing prodigious mountains from an armchair, reading books. As a father I felt that I must not go into the mountains on real trips; that would be irresponsible. I hated my epilepsy for this constraint.

I think my family wondered why I did not want to tramp like in the past or to learn to ski as they were. But I could not tell them of my fear that my luck with ignoring my epilepsy in the mountains had been stretched too far already. As I looked back on my earlier adventures, I now knew it had been foolish, rather than manly, to undertake my often solo trips amongst the fast flowing Canterbury rivers, crumbling rock ridges and icy snow traverses — often in deteriorating weather. But I didn’t want to come face to face with a new “sensible approach” to the backcountry by taking a safe path along its edges. I took my children to my favourite places, such as Arthur’s Pass, but put aside real adventure for my other love of creating and building gardens, for a time on our small holding, and later at home. I remained fit and strong.

Vegetable gardening is a love of mine; I also saw it as a safe and responsible outdoor activity for a father — but in the garden my thoughts were often in the mountains.

Eventually, in frustration I took on a duplicitous role of being more open about my epilepsy professionally, but deciding to reignite my “ignore it” strategy in a less dangerous sport environment; that of road running. I had learnt from experience that physical exhaustion was a trigger for seizures, yet I decided I wanted to run a half marathon. That task was achieved easily, and then a few months later I ran my first marathon. That too was achieved, but this time for a few days following the race I had a series of minor seizures.

But running had rekindled my desire for adventure. I wanted to undertake the Coast to Coast race. This is a 243km race over two days across the South Island, crossing the main divide of the Southern Alps, and involving road cycling, mountain running and kayaking. I had never done any road cycle racing or kayaking before — in fact, I couldn’t even swim properly.

I brooded over the issues involved. From decades of living with my epilepsy I knew two key triggers for my seizures were low blood sugar levels and physical exhaustion. I realised that these are matters that endurance athletes encounter and have to manage regardless of whether they have epilepsy or not. I read books on these matters. To keep blood sugar levels up you merely need to eat appropriate food regularly in small amounts. I learnt how to eat while running and leaping up steep rocky hills and while cycling. I made my watch beep at 15 minute intervals which was an instruction to eat a mouthful. As to the seizure risk of physical exhaustion; I simply trained hard, always without fail during one of Wellington’s worst recorded winters and springs. I reasoned that I could push out the bounds of what I found physically exhausting by building up my fitness more and more. Kayaking was the biggest danger, as I was slow to acquire the skills and I took many tumbles in the rapids of the Rangitikei River. But with my nutrition and fitness strategies as well as my life jacket and improved swimming skills, I thought the risk reasonable. Of course, I told my fellow kayakers of my epilepsy.

My training for high fitness and greater overall body strength went well and, in particular, my running of Wellington’s steep, rough hill tracks was delivering good results. I increased my training week by week and suffered no grand mal seizures, and overall my epilepsy was in a noticeably better than normal state of control. I’m told that over all those months of training I had only minor seizures a couple of times after a big training session. I reasoned that in carrying out my strategy of pushing out the boundaries of my triggers for seizures, it was no more than a minor push-back if I went a little too far one week.

A crunch came one evening when my former wife (a GP) and my sons sat me down and spoke of their concern for my safety in undertaking the Coast to Coast race. It was a very stressful situation for me. I have responsibilities as a father and great love for my family. They were anxious to ensure I did not take on the predictable and dangerous risks that are inherent in the race. I explained the well organised safety features of the race, including my declaration to the officials of my epilepsy, which would require me to wear a bright pink band during the race to tell all of my medical condition. I spoke of my seizure “trigger management” strategy. But I needed to do this race. The eventual agreement was that my former wife would join my support crew and at the transition points between race stages she would assess my physical state. It was a sobering experience, but I was convinced I was not being selfish, and that the risks were being well managed.

My biggest concern about the race was that a seizure would occur during one of the three road cycle stages, resulting in me crashing off the road. My dread was that while crashing I would also bring down other riders, ending their race. I did not want to know myself as a person who, due to my epilepsy, had been the cause of bringing a year of rigorous training of other fellow athletes to a futile end. The final stage of the race is a 70km cycle, when my body would be most vulnerable to my seizure triggers. At night, in bed, I assessed again and again if I was fit enough not to be a danger to others; in response I selected cycle training circuits that were dominated by hills and rode them more frequently. (Ironically, I later realised that this was not ideal race training for there are few hills on the cycle stages, and I therefore lacked speed compared with others — except on the infrequent hills).

The race was a wonderful, fun, adventure filled event. The 38km mountain run up a rugged boulder river and over an alpine pass was real kiwi living. The 67km kayak through the Waimakariri Gorge with its soaring rock cliffs on either side of the white water was breath-taking in its beauty — this was absorbed even as I struggled to remain upright in my kayak. I finished the race and next day felt little tiredness. Another day later, back in Wellington, I was in my pinstriped suit and transformed into a negotiator. I suffered no post-race seizures.

Identify your triggers for seizures, manage them, and the World opens up.

I run my life now in a way which acknowledges and embraces my epilepsy. Occasionally it rears its ugly side; indeed as I write this I am recovering from a stint in hospital resulting from my body suddenly reacting to the medication which I’ve been on for years. I had a severe toxic reaction to it for no apparent reason. I know there is increased risk ahead for me as I stabilise into a new medication regime. But I have the tools to manage that.

For those fellow epileptics out there, my slowly learnt knowledge of how to live with epilepsy is simple. Be open with people about your condition; try to learn what are factors that appear to trigger your seizures, then focus on management of them. Maintain a whole of body physical fitness. Remove stress and negative emotional baggage of shame, embarrassment or anger by acknowledging that epilepsy is just one of many features of you as a person. There may even be some positive elements arising from that feature, such as a greater persistence or willingness to take advantage of opportunities that come your way.

Epilepsy doesn’t define who you are. It means that when you take on a challenge, big or small, you need to manage your epilepsy with well-developed strategies and with prudence. To succeed with your challenge, having actively embraced your epilepsy, gives you an increased sense of achievement and happiness with yourself.