kumiko cappoeira baby varkala india : muggy 2004 : dancing cappoeira at sunset under the hang of stony cliffs; kumiko with the perfect dimple in the low of her perfect back strikes high; 50-rupee thalis from mama k, blood red beitrut chutney, mango banana curry, coconut and mint dips, husked brown rice, crispy hot papadams, spicy onion, salty beans ... and more ... a feast for many sitting hunched in mama k's low-slung lounge, palm leaf plates and dripping candles adorn a shaky table, every night sitting satisfied on her sand-bitten stoop, all of us breathing slowly and one of us singing long and lonely into the dark hot night ...
I know this next bit is long but it is such a beautifully related story from someone I know and care about - EM. EM is in her 20s. She is the younger sister of a good friend of mine.
If you met her you’d be impressed by her wit, her intelligence and great conversation stemming from an acute awareness of the world around her, linked to strong views on lots of things.
What would amaze you though is that if you left the room and came back a few moments later, EM probably wouldn’t recognise you as someone she’s just been chatting to. EM developed a brain tumour in her teens, and this is the incredible story of her learning to live with the consequences ... a transcript taken from a radio interview with the ABC.
EM: My friend Jess, is the only person I know who doesn’t complain about having a bad memory. She’s a phenomenon, but I think it was inherited. Me? I’ve the memory of a fish. Jess knows more about my life than I do. She even seems quite envious, and tells me, ‘Em, you know what’s so great about your memory? Firstly, you make a new friend every day; secondly you can hide your own Easter eggs; and thirdly, you make a new friend every day.’
I first knew something was seriously wrong in 1997 when I was in Year 12 at school. I was lying in bed when I was suddenly overcome with an intense sensation of déjà vu, followed by a rush of foreboding and then indescribable fear. Then there was a feeling that I was going to die, which progressed into a horrible guilt of even existing. It was such an intense feeling of madness that I didn’t tell anyone what was happening. These feelings continued and they became more frequent, and I found myself sleeping a lot to try and escape them. Then they followed me into my sleep.
Each feeling held the full emotional assault of the first one. Looking back, I can identify other symptoms at that time. My friends would sometimes wave their hands in front of my face and complain of my freakish staring. I would fall asleep with my eyes still open. I studied Japanese for my HSC and throughout the year it became more and more difficult to learn to recognise and draw the intricate kanji characters.
This was because my visual memory was deteriorating. I found myself unable to retain information for long periods, and had to cram for my HSC exams.
In 1998 when I started university, things got worse. The feelings increased to six a day and two in my sleep. I began to suddenly wake up at places. I came to in the middle of Sydney University one day, and didn’t know how I got there or why I was there. I awoke at the podium in the lecture theatre, only to realise I was in the middle of delivering a speech in Japanese. I began cocking my head when taking orders at the bar I worked at part-time to move the customer out of giant black spots in front of my eyes. I was convinced I was mad, and went to see a GP who diagnosed panic attacks.
She prescribed deep breathing, rescue remedy and cognitive behavioural therapy which of course did nothing.
In 1999 six months into my second year of uni, I woke up next to my bed, my hair matted with blood and with ambulancemen standing over me. They took me to hospital. The doctor suspected I’d had a fit, and I was given an EEG. The results confirmed I was epileptic and I then had to have an MRI.
The next day I was called into St Vincent’s with my family and told that they had found a golf-ball sized epidermoid cyst in my right temporal lobe, that it was benign and operable but a large tumour. It was a horrible shock, but there was also a certain relief because finally I was being heard and the gravity of my misery was being acknowledged as something serious rather than a personal incapability to manage stress.
Over the next few years my wonderful neurosurgeon and I were to get to know each other very well. The night before my first operation, my family came into the hospital with me and sat around my bed. My macabre sister, Nina, was hiding something behind her back and looking terribly pleased with herself. She announced she’d made me a present and pulled out a life-sized papier-mâché head on which she’d painted two eyes, a nose and a big smile. She then pulled out a large steak knife and told me I had to carve through the top of it to get to the chocolates inside. Such a charmer!
The night had a very sombre ‘Last Supper’ feel to it, and when it was time for them to leave, my sister left me with a tape she’d compiled to listen to in my Walkman, something akin to ‘Nina’s Greatest Funeral Hits’ with a lot of Radiohead and Jeff Buckley.
I was so scared, and spent the night thinking of every possible horrible outcome, of becoming severely mentally retarded and not having the intelligence to even know it.
The surgery went for eight hours; it was complicated by tentacles wrapped around the optic nerve and extending into the choroidal fissure which is the groove on the surface of the optic stalk. The neurosurgeon couldn’t remove the whole tumour and scheduled another operation in six months time. This was devastating, however I considered myself lucky that I didn’t think it was 1963 like the guy in the bed next to me.
After the surgery, I returned to uni with a freshly shaven head and three of my friends shaved their heads in support. Having a shaved head was quite liberating, and I had a bit of fun with it. When checking my ID the bouncers would often stare suspiciously from the long-locked girl in the photo to the neo-Nazi with giant scar and track marks before them. I’d say, ‘You think this is bad? You should have seen the other guy!’ When my hair grew a bit, I fell into spiking it, which was strange, because it made me look a lot cooler than I actually am.
The crazy feelings persisted, and the evil presence in my head continued to let me know who was running the show. My sudden awakenings at strange places and attacks of amnesia increased. In these episodes, known as complex partial seizures, I’d suddenly become very forgetful and not know much about my life. I wouldn’t know whether I was still at school or university, or that I had a brain tumour at all.
Once, lying in bed, I jumped up and asked the guy lying next to me who he was and why he was in my bed. He was my boyfriend. It was horrible, and very difficult at the time. But when we broke up, it made it very easy to forget him.
These seizures could last 10 minutes or a couple of hours. During them, I’d ask the same questions over and over again, unable to retain the answers for more than a few seconds at a time. I was amnesic about my amnesia. When I came to, I wouldn’t know anything of what had passed. I relied on the people around me to tell me what I’d done, and sometimes they threw in embellishments.
The doctors began neuropsychological testing on me to isolate which parts of my memory were most affected. Each test took about three hours and involved copying diagrams, remembering stories, names and lists of words, completing complex block designs and recognising buildings and people’s faces.
The testing was exhausting, and every test showed a decline in my previous scores. Exactly the same test we used each session, and it was devastating to be presented with a block design that I knew was easy, and I’d quickly completed last time. I’d sit there stumped, and unable to do it.
Recognising faces has been my greatest problem. At one stage my own face became alien, and I’d stare at myself in the mirror, moving my arm to see if the reflection moved with it. I’d stand there and stare, and felt an utter disconnection to this reflection.
I find it hard to recognise anyone I met after 1997. It helps if there’s a defining feature such as a piercing, or glasses or facial hair. It’s difficult for me to remember a person’s face, even for 30 seconds. Working part-time in the pub doing my degree, I’ve learnt to remember the colour of a customer’s top so I know who to bring the drinks back to. There was one hairy moment in the bar when I was collecting glasses and had a tower of them up to my ear. A dirty grey old man I was passing suddenly grabbed the bottom of my pants and rubbed his hand up and down against me. Unable to stop him with my hands full of glasses, I shot him a horrified look which was really designed to study his burgundy T-shirt rather than intimidate him.
I walked away to offload my glasses before returning to that end of the bar. I stormed up to the man in the burgundy T-shirt and told him how disgusting he was, and that he would have to leave the bar immediately. These gentle, bewildered eyes looked up at me and the man silently raised his hand and pointed to the left. Two people down from him there was another grey-haired man in a burgundy T-shirt.
There have been other pickles. One night I met a great boy. We were introduced and we sat down and talked for most of the night. At one stage he excused himself to go to the bathroom. A few minutes later a guy came up and sat down at my table, which seemed very forward of him, and I put my hand out and introduced myself. He looked at me like I was absolutely mad and said he was the same guy, and that all he’d done was go to the bathroom. I realised that that wasn’t all he’d done: he’d taken his jumper off while he was in there.
I had another operation six months later. They were able to go in the same incision, and after 6 hours I was back in Intensive Care. They told me it had been successful but that I’d have to stay on medication for at least a year.
The brain surgery itself wasn’t terribly painful, it was the removal of the staples that really hurt. For each operation there were over 40 staples sealing the incision. They’d sit me down, hand me a disposal tray and set to work with pliers and no anaesthetic. It was excruciatingly painful.
The doctors believed that this surgery had worked. The tumour had been removed, but the scarring inside would mean that I still had temporal lobe epilepsy.
The feelings changed. They now became a slightly evil, uncomfortable presence. The presence would come and go as if to say, ‘Don’t get too comfortable; just reminding you who’s boss in this head.’ I got more complex partials during which my taste would change. I’d look down at my clothes, find them foreign and in bad taste, and ask whose they were, incredulous that I’d bought them. It was like hearing about another person. My mum laments shouting me a holiday to Melbourne that year. The only reason that I know I ever went to Melbourne is because I see myself smiling back at me in the photos.
I continued to do my media and communications degree, able to choose subjects that didn’t have exams. However, suddenly I was getting my essays back and wondering how I’d possibly written them. I didn’t know anything on the subject matter, much less the meaning of a lot of the words I’d used.
This was the beginning of a rapid decline. Soon I could only read short stories because I couldn’t remember what had happened previously in the story. I started going to see the same movies a couple of times. I caught myself out when I went to a film, then recommended it to a friend, who told me I’d seen it with her three weeks ago. I’d look through my diary and not remember going to any of the events written down in there. I read old emails my friends had written in reply to mine. I read the bottom of the email to see what I had written to them and there was this collection of stories of another person’s life. I read what she’d been up to and I laughed at her jokes. I was particularly surprised to learn that she’d played soccer at university. I never knew she liked soccer.
The doctors suspected frequent seizures were erasing memories, but the number of seizures I was having didn’t explain my decline. They hooked me up to an ambulatory EEG, a recent technology that can record brainwaves for three days and nights. Electrodes were stuck all over my head, and the wires snaked down to a console that I wore around my waist. I sat in the Neuro waiting room and read my horoscope: ‘Your mental batteries need recharging’, it said. Finally, ‘Women’s Weekly’ had got it right.
For the next three mornings I went into RPA and they downloaded the last 24 hours brainwaves. I went down to the pub, believing I had to give an accurate cross-section of my brainwaves in day-to-day life. I did get some stares, and I had a good time making up stories. A lot of people walked out of the pub that night, believing they’d witnessed a trial of ‘the effect of alcohol consumption on orgasmatrons’.
The ambulatory EEG showed that I was getting three seizures a night in my sleep. This was momentous, because up until then, to our knowledge, I’d only have a seizure once every few weeks. The neurosurgeon said he would have to do a full right temporal lobectomy. If you’re lucky enough to get a brain tumour, the right temporal lobe’s the place to get it. The right temporal lobe is responsible for memory, emotion and personality, and it seems you can do quite well without it. I found solace in the knowledge that if it left me an amnesic with no personality, I wouldn’t have the emotion to care.
As with the previous two operations, my understanding of the dangers of the lobectomy was that there would either be a change in physical capability, mental capacity, or both. In five hours, the neurosurgeons removed the remaining tumour, my right hippocampus, and right temporal lobe. Thankfully when I came to, there were no obvious disabilities. The Registrar said, ‘When she regained consciousness, the first thing she said was “Can I have a Diet Coke?” It was then that we knew she would enjoy a high quality of life.
After this surgery the tumour was gone and the feeling stopped. There was no physical paralysis and no immediate mental problems. What I hadn’t been prepared for and what did result from the lobectomy was a dislocation of my identity. I didn’t feel like me any more, and have forgotten how to get back to me. It’s a side effect of a temporal lobectomy for the patient to have a change in personality, and for the change to be obvious to everyone except the patient themselves. I developed a ‘Truman Show’ paranoia, where I believed that I must have awoken post-op a very different person, a lesser person, and the world and its characters were feigning normality to stop me from finding out.
I noticed that processing information in my head is harder, and I have sensory overloads where there’s just too much information at once. I’ve become incredibly hyper-emotional. I get upset very easily, particularly watching or reading the news. My sense of inhibition has lessened and I find myself coming out with inappropriate comments and telling people very personal things. I’m currently trying to curb this. My sense of smell has heightened and I smell quite pungent smells that others don’t.
However I think what is perhaps the toughest thing I’ve had to do with post lobectomy, has been the loss of this evil presence. Whilst the presence was debilitating and made me feel guilty, depressed and a terrible person, and seemed to take malicious enjoyment in creating my misery, it was still a being inside my head that lived with me for six years. Someone else is running the show. Quite suddenly, post-op, when the feelings and presence disappeared, I was given sole control of a person I’d forgotten to know. I hated this controlling presence, but now it left me lost. I began to miss my horrible feelings, only for the feeling of being the person I used to be. I’m still working out who that being is.
Today I have memory problems and I still have the odd seizure. The latest seizure was in a job interview. I must have really turned the tables when I became the one questioning the interviewer about myself. I’ve learnt little daily adaptations. I no longer spend more time walking the groceries than walking my dog in the perennial quest to find where I’ve parked my car. Now I save a text message to my phone with the street name and nearest cross street. To remember a person’s name I find that if I link them to someone with the same name that I know from my past, it’s much easier. When remembering faces it helps if I think of the person as an animal, and if I have to remember a list of things to do, I sometimes ascribe an object to each thought and place them in different rooms of a space I picture inside my head. I then walk myself through this space to recall the list.
If I’m using creative imagery, even if it becomes a much more convoluted idea, it makes it easier to commit things to memory, and when all else fails, there is always the back of my hand.
I never saw myself as someone who could be epileptic, but then I’m sure most epileptics would say the same. And I didn’t foresee that the side effects of the lobectomy could be anything other than purely physical or intellectual.
I’ve wrestled to find myself in this incognito state, and in that fight I’ve learnt that I will never return to normal, that I must find a new normal, and then quickly get my friend Jess to remember it for me.
