Transgressive: go beyond the limits of what is morally, socially or legally acceptable.
From the Latin: step across.
I have epilepsy. Intractable epilepsy. My uncontrolled seizures have changed from the time I was diagnosed eleven years ago. I can fall to the ground, walk around unaware of my surroundings, I make strange noises and say unusual things. Epilepsy, I have discovered, isn’t socially acceptable. It makes people uncomfortable. I have to consider social situations, because I may have a seizure. When I do have a seizure, I often wet myself. I feel different from my peers, who don’t normally have to consider wearing incontinence pads. When I forget to wear a pad, I have had to endure the embarrassment of pissing myself in public.
I have temporal lobe epilepsy, which means that my seizures come from the temporal lobe of the brain. Temporal lobe seizures usually begin in part of the limbic system, which controls emotions and memory. This is why they can involve have a sense of déjà vu, fear or anxiety, and why some people, including me, have problems with depression and memory.
I was diagnosed with epilepsy in 2004 while in a mother/baby unit called Banksia House at the Heidelberg Repatriation Hospital. I was being treated for postnatal depression. Looking back, it was the worst time of my life. I still cannot correlate the birth of my first and only child with the demonic experience of chronic depression and the discovery of my epilepsy.
The house was a dark and unfriendly place. Sometimes I think about going back to see it. I’ve been told recently the mother/baby unit has moved to another location within the hospital and I am secretly relieved there is an excuse not to visit.
I should be grateful that the epilepsy was discovered while I was there. It could have been a dangerous situation having a seizure outside the hospital but, as it turned out, I was in bed with my husband at Banksia House when I had a tonic-clonic seizure and woke him up. Michael called the nurses on duty and I awoke to find medical staff staring at me. This led to brain scans the following day and discussions with neurologists who pronounced epilepsy as the cause of my disrupted sleep.
For the last eleven years I have obediently remained on the conventional medication administered by the neurologists trying to control my seizures.
In most cases, seizures associated with temporal lobe epilepsy can be fully controlled with medication. If drugs don’t work, then surgery is an option.
I was monitored at the Austin hospital for brain surgery in 2013. They discovered that the seizures were occurring too close to where my memories were formed. If I went ahead with surgery then something akin to amnesia would occur. I was told all my memories would be lost and my capacity to remember would be severely impaired. As a writer I felt it was a dangerous option – I rely on my memories far too much.
Three years ago I had a feeling that I should have a puff of a joint. It was an instinctive sensation, a cognitive motion much more pleasant than the seizures that stirred the desire for cannabis in the first place. I had not smoked marijuana in over a decade. But I began thinking about the laughter and conversation I had shared over a smoke with people I loved in years past.
I was out with a friend for a drink and we were going to stop at our mate Sol’s house on the way home to say hello.
‘I’m going to ask Sol to roll a joint. I’ve been wondering lately if it would help the epilepsy. It’s been ages but I’ve always liked a smoke. It usually took the edge off. I wonder if it still will.’
I had only a puff. I thought that was enough after a night of drinking. I wasn’t supposed to drink alcohol with the anti-convulsant drugs. That one toke left me exhausted and ready for sleep. I was taken home and put to bed.
Sol gave me a joint to take home.
I smoked it a few nights later with my neighbour Larissa and we laughed and talked and she got the munchies. It all came back to me: the long nights looking for things to eat and discussing the great ideas we believed were uniquely our own.
As I suspected, it did feel good. Would it help ease the anxiety the seizures brought on?
‘There is no magic pill for relieving your type of anxiety,’ said the psychiatrist when, in the past, I had asked her what could be done.
But I was right in thinking that pot would help. It also seemed to reduce the number of seizures that knocked me about.
I told my neurologist. He laughed.
In late 2013, a friend rang and told me to download a radio show on 3AW. It was about medicinal marijuana and the benefits for people with epilepsy.
Bells went off for me.
The podcast focused on a part of cannabis that is called cannabidiol or CBD. Cannabidiol makes up about 40 per cent of marijuana.
It does not contain THC, the psychoactive component that gets you stoned. Cannabidiol cannot get you high. It is consumed in tincture form and has a mild taste that is palatable.
I was given the phone number of the woman interviewed. Her daughter had benefited from CBD, with her seizure count dropped dramatically.
Clare (I’ve changed her name) was helpful and gave me the details of Tony Bower of Mullaways Medical Cannabis in northern NSW. He was making the CBD and providing it to families because he knew it could help.
I emailed Tony and told him about my epilepsy. I said I’d heard about him through Clare who’d been interviewed by a radio show in Melbourne.
He responded immediately. He explained that he grew cannabis from which he extracted cannabidiol and created a liquid. It was to be ingested daily.
Gently, he explained that he was overrun with demand. He suggested I try again in a month’s time.
I had a sense that I was dealing with a personable gentleman, who was willing to help.
Nonetheless, I wasn’t willing to wait a month, so I pressed on in my search.
I spoke to my naturopath and she gave me the recipe for making CBD. I took home the photocopied notes she’d given me and had a careful look at them. The process was beyond my understanding.
I searched on the internet for suppliers of cannabidiol. Someone else was supplying out there, I was certain.
I discovered the Healthy Hemp Oil company in the US. I sent them an email and I received a swift reply. The contact person was friendly and curious about why I wanted the CBD. I was explained that I’d had enough positive feedback about CBD to think it could work for me.
The Healthy Hemp Oil company were willing to supply a tincture. Things had begun to change in the States regarding the legalisation of cannabis.
I ordered my first tincture. It arrived in a box with US Postal Service stamped on it. It was exciting to receive an international parcel. After undoing all the wrapping, I found a small bottle with a dropper. The instructions said to place six drops under the tongue and hold them there for 60-90 seconds. I had selected the peppermint flavor, which was pleasant. I knew not to expect to feel stoned because the contact person at Healthy Hemp Oil had reassured me that I wouldn’t.
Instead, I felt anticipation, which was a wonderful feeling.
I was told it would take a few weeks to notice any change. So it proved.
I first noticed the gradual disappearance of simple partial seizures. They’re not visible to someone else, but to the sufferer, they’re hideous, like a flicker of a nightmare, a fragment of other seizure sensations. They plagued me often, though they didn’t knock me out, however, like the more intense Complex Partial seizures.
A change was happening. I took the tincture every day, along with all the conventional medications. I was hopeful!
My mother was born in Alexandria, Egypt, to an Italian family. She would tell us stories of her childhood in that post-war cosmopolitan city. I loved hearing about men smoking hashish in cafes along the boardwalk in the suburb of Cleopatra where she lived. It sounded so exotic.
As an adult I grew to enjoy a smoke of the illicit drug myself, unbeknownst to my dear mother. When I was waiting for the cannabidiol to arrive from the States, I told one of my brothers, with whom I had enjoyed joints together in the past.
It was a relief to share my story with a member of a family who I assumed would understand.
There is a transgressive impasse that prevents me from sharing my revelation with the rest of my immediate family. I come from an unsparing Italian family, a patriarchal one, with conservative values.
My family has changed in its order of authority. My dictatorial father is no longer with us; my mother, whom I think would have been intrigued by the medicinal cannabis, has Alzheimer’s. The two remaining brothers I have never been interested in marijuana. I suspect the eldest brother would refuse to hear an explanation of cannibidiol. The other brother is closer to me in age and would be initially suspicious but, if he knew it was helping me, he would be open to discussion.
I switched neurologists and now have had some interaction with the Austin Hospital’s Brain Centre. When I told the medical team about the CBD, there has been a murmur of response.
But it was a non-committal interest that was marred by politics.
The trials manager told me that it would be at least two years before trials in cannibidiol would be conducted.
I realised, then, that I was alone.
With conventional medication I had been told how much to take and at what time of the day, and I’d been reassured there would be support if there were any negative side effects.
I didn’t know how much of the tincture I should take and I still don’t. No one in the medical team I associated with proposed a measure.
Eventually my neurologist at the Austin said that if I were caught by the law with the cannabidiol he would support my case one hundred per cent. He had taken the leap of transgression with me.
I was grateful. Cannabinoids cannot be imported into Australia for personal medical use. Yet the cannabidiol I am using is made from industrial hemp, which is legal in Australia.
I noted in my journal the changes that were taking place: fewer seizures and less depression. It was a revelation.
My husband could see the difference in me. I was definitely feeling better. There was a brightness I had never experienced before. Everything was illuminated, glowing. I remember saying to myself that this was better than being stoned.
I played with the idea that perhaps the seizures had come to an end. I went to see my optometrist and she explained that it sounded like a neurological visual phenomena. All my research did was uncover negative associations with the principle of ‘phenomena’. There were references to occipital epilepsy, but the ‘visual phenonema’ was nullified.
This was not my experience. Mine was joyous, a visual profusion that grew with each day.
It lasted a week. I woke one morning to find the world had returned to its usual self. The seizures continued.
Throughout 2014, I have noted and graphed all seizure activity for my neurologist. I have not had the pleasure of a fortnight free of seizures as I had last July. When I am able to adjust the CBD dosage to one that suits me, I surmise greater lengths of time seizure free.
I have had a longstanding wish to be able to come off the conventional medications with their uncomfortable side effects (sedation, memory loss, lurid dreams). That seems a long way off.
At this stage of my life, in my early forties with an 11-year-old daughter and with my medical condition, legalising marijuana has lost its importance for me. I rarely smoke it. I’m concerned about the ill-effects of the hydroponic pot that circulates.
Mine is more a medical advocacy than a recreational one. My reading into the effects of cannabidiol has revealed its ability to assist those who suffer conditions such as Parkinson’s Disease, Multiple Sclerosis and cancer. My early instinct about the neurological potential for cannabis makes me want to share my story with others.
Medicinal cannabis is a primary topic in Australian symposiums addressing epilepsy. The major concern is undertaking trials to reveal a method to develop a pure form of cannabis which everyone can receive.
Who would stand in the way of a tincture that provides a much yearned for freedom to people with intractable seizures? From my viewpoint it seems ludicrous to be wasting valuable time that could be used undertaking trials in our state-of-the-art hospitals.