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"Mrs. McDonnell, it's Lindfield Public School. Molly has had an epileptic fit and has been taken to Royal North Shore Hospital in an ambulance."
The shock stung, shook my senses so that thought, any semblance of rationality left me. I needed to call her father, but the school had not put the phone back on the hook and therefore I was unable to make any calls out. Confusion everywhere! I ran next door, called her father and then ran (arthritis left me) to catch a taxi at the top of our street.
On the way to the hospital, sitting in the taxi, watching the shadowy superstructure of the bridge ripple over the windscreen I wondered - epilepsy? What does that mean? What is epilepsy? How could this be?
I barged into the hospital's emergency area and was ominously met by the concerned and solemn social worker. Pammy, my dearest friend who had accompanied Molly to hospital, and my darling stepdaughter Miriam, had been allocated a small room which to be counselled. My panic intensified - Molly, where was Molly?
I was taken in to see my dearest girl, unconscious, on a respirator in her school uniform - the one I'd ironed that morning.
My whole body screamed with pain. Of epilepsy I knew nothing. Scans showed a mark on her brain - tumor was dismissed and strangely I was relieved. The MRI, new, the only one in Sydney at the time, would reveal more detail. My god, what other horrors did I need to know?
Molly was eleven. She needn't stay here at RNSH. She would be transferred to Camperdown Children's Hospital. Still unconscious she travelled with a fragile mother, wracked by fear, in the ambulance to Kids Intensive Care.
At 11.30pm, while her father, Ian, and her stepfather stroked her head and held her other hand, I noticed the tiniest quiver on her bottom lip.
"She's trying to speak" I whispered, "She's trying to speak."
"What is it my darling?"
Soon only I heard, "Take this thing out of my mouth."
Molly had been drugged after her initial seizure because she had continued to fit. She had difficulty breathing and the respirator had been inserted after her arrival at RNSH. The drugs that had her in a coma were starting to wear off.
She stayed in hospital for 10 days and our epileptic education began. She did not have fungal meningitis. She did not have a brain tumor. She had lesions on her brain. Mysterious lesions on her brain. She had lumbar punctures, scans, EEGs, video telemetary and MRIs. All scary new territory.
Now, however, it all seems "old hat". Sometimes I think that I became blase´ because Molly managed so well with so much.
After her first episode she did not have another seizure for 18 months. 100mg of Tegretol a day had kept her fits at bay. Now the medication was increased. Now panic became a part of my life.
Because she was growing up and needing to exert her individuality and her independence, the panic I was feeling should not confuse nor restrict her. The limitation of a 4 o'clock call to mother was essential. If I knew where she was at 4 o'clock then I would not imagine the worst - lost amongst a crowd, unconscious on a street, among strangers, unidentified and terrified, struggling to breathe.
I'm sure I communicated my fear and anxiety to her. How could she grow in confidence when her mum was so fearful - more mother angst.
But she did! My gorgeous girl. She did! She worked at being normal.
As a student at Newtown High School of the Performing Arts, Molly was recognized with numerous awards for her outstanding academic achievements, particularly in English - a model student who thoroughly enjoyed acquiring new knowledge - she loved to read, she loved history. Admired by her teachers for her diligence, intelligence and her endurance of her disability. Testimonies from teachers offer praise for the fact that Molly never used her epilepsy for special conditions for examinations and assessments. Politely she would excuse herself if she felt an aura, the precursor of a seizure. On numerous occasions I was called to school. I am ever so grateful for their care and kindness.
By the time she was fifteen her doctor, Dr Robert Ouvrier, concerned that her epilepsy was not successfully controlled by a combination of drugs, referred her to Dr Andrew Bleasel, a neurologist, to discuss the possibility of neurosurgery.
Apparently the lesions on the brain which appeared in scans could be removed. They were the focus of the epilepsy but they were the in the area of the brain which controlled her vision and the movement in her left arm and leg. Pre-surgery testing was in two phases and involved time in hospital. Electrodes would be placed on Molly's head, medication reduced to induce seizures while computers and videos recorded her reactions. Later electrodes would be placed inside her skull, on her brain, and the process would be repeated. The tests would inform the doctors about the risks involved with removing the lesions. They did not want to cause any further handicap to Molly. She risked paralysis down her left side and the loss of her peripheral vision.
At fifteen, Molly didn't want to be epileptic. She hated it. She wanted to stay up late and smoke marijuana with her friends. That's what she told her doctor. She became depressed and so begun two years of psychiatric therapy. She tried to take control of her life but her epilepsy impeded and frustrated her. Stress exacerbated her condition. Stress, anxiety and depression, often conditions faced by adolescents, caused further fitting and so the awful cycle continued.
Her final year of high school was dreadful. Drug combinations had been trialled and failed to control seizures. The stress of the HSC intensified the problems and I convinced her to seek special provisions from the Board of Studies. She fitted during her Modern and Ancient history examinations but struggled on. A new drug combination reacted badly and affected her balance and her motion and her speech capacity. On a couple of occasions, about forty minutes after taking her medications, she was unable to move or speak. When she did she appeared severely drunk.
During her exams she went to the doctor for another matter and she noticed how unsteady she was as she followed her into the rooms. A blood rest later revealed that she had toxic levels of one medication in her system and she must be rushed to hospital.
Her final exam, 3-unit English was the next day. She refused to go to hospital until she had completed it. The examiner conducted the exam at home. She was admitted to hospital following her exam and treated by the neurologist and her psychiatrist.
The operation loomed. It was there as a solution but it was postponed on 4 occasions. In 1998 she enrolled in a Bachelor of Arts/Bachelor of Social Work at the University of Sydney. In second year she moved into a share house. Strategies to manage her life proved that she was prudent with her finances, developing culinary arts and efficient at the part time market research job she had found. Epilepsy management consisted of a special alarm to remind her to take pills, lots of sleep and knowing that seizures could strike at anytime, anywhere. And they did, on buses, bus stops, trains and train stations, in the street, in the park, in the shops and cafes and often in the shower. She had to lie down while all soaped up and wait for a fit to pass.
Memorable moments included the time at the chemist shop one morning while waiting for the shop to open, when the police had called into McDonalds for breakfast, the fire brigade were attending a false alarm nearby and the morning commuters were lined up at the bus stop outside the chemist. Molly's fit caused concern and assistance from everyone. She had approximately fifteen attendees when the ambulance finally arrived.
Ambulances attended at home, at school, on street corners and in shops. At the Big Day Out she chose to climb under a table at a T-shirt stand, have a fit, and afterwards return to the audience. She always called me and I came to collect her. As the years went by I stopped panicking. The conversation usually went something like, "How's your head?"
"I've got a headache but I'll be alright when I've had a sleep."
Maybe now as she was finishing uni it might be a good time to think about this operation but maybe after the overseas adventure. In 2002 when she finished university she travelled to Europe alone. Tearfully she confessed her fears as we said our farewells "What if I get lost and have a fit?" to which I replied, "Do what you always do my darling. Tell someone and ask for directions."
To be continued ...
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