Blood and Guts: One Woman's First Hand Experience of a Craniotomy (A Tragi-Comedy) by Laura Solomon
Your own personal craniotomy. It seems too incredible to be true - the kind of thing that would happen to somebody else: a cousin, or an old friend from high school with whom you lost touch years ago, that strange woman who used to live in the house next door to yours in Mount Albert when you were a child, the one whose double-hung windows came down upon her thumbs, trapping her, until she cried out and your father went across to rescue her. Phillips, you seem to recall her name as; Mrs Phillips.
You were too young to realise then the complexity of the labyrinth you were immersed in. The complex web of family relationships that surrounded you. You had never seen your father cry. You did not understand the way in which the vast majority of people have two masks. You could not comprehend public versus private: the way in which we, as humans, present one face to the world, Eleanor Rigby-style, and have another private self that we keep well-hidden; the ace to be played at the last minute, the trump card.
How much of life is a game of push and pull, give and take, one-upmanship.
You still though the world was a kind place. You hadn’t learnt yet that nobody respects a push-over, that the strong devour the weak and then sit gloating, munching on the bones, fresh blood dripping from one corner of the mouth.
Like many New Zealanders, it was Janet Frame who introduced you to the horrors of mental institutions. When her biographies were released, you witnessed first-hand the suburban schadenfreude; a kiwi Heart of Darkness, our very own version of the horror, the horror. You accompanied your mother when she went to visit a friend whose husband worked with your father, and the two of them sipped tea, munched bickies and gossiped about To The Is-land, relieved that it was Janet who had suffered and not them.
Mental illness was hush-hush, taboo.
Most cities of any size had their own institution. Yours had Ngawatu, the remains of which still stand, the old villas and the 1920s houses where the doctors lived, the tennis court and the bowling green. They even had their own shop where they could spend their ‘pocket money’. Even the most unimaginative individual could easily picture the villas to be haunted by the ghosts of inmates past.
The gardens are beautiful, well-maintained to this day by a caretaker who lives in a ramshackle house on the grounds. The rhododendrons bloom. The natives: Kānuka and Mānuka. The flowering bulbs: jonquils, daffodils, freesias. The gardens are lovely, although I have no idea how many of the patients were allowed to roam freely and what other restrictions were imposed upon their liberties.
Doctoring, like lawyering, is not a business of black and white but, at the risk of sounding like the recently-released Mummy porn that has been flooding the market, contains many shades of grey. Lawyers deal in ‘legal’ or ‘illegal’, although there is plenty of room for shark-like maneuvering. Shrinks deal in 'well' and 'unwell'; plenty of maneuvering in that profession too.
The more cynical amongst us would call them glorified pill dispensers. What do we do when the brain goes haywire? Behaviour is analysed and then diagnosed. Major depressive disorder, bipolar, organic brain syndrome, Aspersers, ADHD, epilepsy, anxiety, PTSD, paranoia, delusions, obsessive compulsive, schizophrenia, dissociative personality disorder, paranoid schizophrenia, psychosis.
The treatment is dished up; pills, the depot (an injection, typically administered fortnightly), ECT, seclusion, restraint, insulin therapy, IPC. I speak in defence of the patients - somebody has to. In any setting other than a psychiatric institution, a lot of what takes place would constitute human rights abuse.
Oh, I know, I know, there are the posters on the wall. Your Rights, but it's all fairly tokenistic. Toothless. Prison might be better. At least a prison sentence has an end date and there's always the chance that they'll release you early for good behaviour. Or if you can stump up bail.
Or get a good lawyer - the vast majority of psychiatric patients will have access to neither. You can be kept in a psychiatric institution, or Mental Health Unit, indefinitely. Most of the lawyers who represent mental health patients would rather be sitting behind a swanky wooden desk, surrounded by leather-bound tomes and piles and piles of files, pulling in six-figure sums than scraping the bottom of the legal aid barrel.
You didn't know when you were young, about the Diagnostic and Statistical Manual of Mental Disorders (DSM), about ECT or insulin therapy or Monsanto. You knew nothing about Risperidone, Lamotrigine, Quetiapine, Dilantin; about the forced drugging of psychiatric patients in order to turn them into zombies who are more easily controlled although you had always been fond of horror stories.
Death by doctoring.
The three conditions for being sectioned remain the same; danger to self, danger to others or inability to care for self. The brain is high-priced real estate. The Tokyo of the body. Private psychiatrists are represented in New Yorker cartoons, the shrinks modelling themselves on Freud, complete with couch and many a fleeing Dora.
The public system is a good deal more brutal and, like the mental health lawyers who resent their colleagues who are employed in the private sector, the shrinks undoubtedly would rather be raking in the cash running their own Sopranos-style private practices catering to the wealthy than dealing with those on benefits.
Perhaps it is a grotesque generalization but the public sector has always been more Scrooge than Santa. Take, for instance, my recent craniotomy to remove a brain tumor – oligodendroglioma, grade 2 in case your granny wants to know. I was operated on at Christchurch public hospital. I had been keeping myself fit. The evening before the operation I ate a hearty meal of steak and spuds in order to make it through in one piece.
I woke up in Ward 28 - Neurology. Felt fine. Was seen by the neurosurgeon, the neurosurgical registrar and two or three nurses. Three days later the sutures were pulled from my head and I was discharged, left to find my own way back to Rānui House. I was driven back to my parent’s home for the night.
Following a nightmare, I sleep-walked into my parents’ room after the surgery, freaked them out and they arranged to have me put in the local Mental Health Unit. I attempted to abscond and was locked in seclusion, a psychiatric version of ‘The Hole.’ The lights were switched on and off all night and I spent the entire time vomiting. They moved me around from room to room, or should I say ‘cell to cell’ in order to increase my sense of disorientation.
The first room had nothing to see outside the window except concrete. It was a form of dungeon. A stitch-proof gown was put across the air-vent to stop the draught. I could smell the murder in the walls.
The second room I was moved to had a plant outside the window, so at least I had some sense of where ‘outside’ was. I wondered if the water was poisoned. The nurses entered with drugs, which I ingested after some deliberation.
They moved me to another room. The doctor came in with more drugs, which I took. What else could I do?
This is how they train you to become medication compliant. The nurses seemed more interested in checking their Facebook messages and gossiping about their latest boyfriend dramas than they did in ‘tending’ to the patients.
All right, boys, out the back, out the back – was what they said before hauling me into seclusion.
I coped by detaching myself, pretending it was a movie, something that was happening to somebody else. I wouldn’t go through brain surgery again – it’s ever so traumatic to have somebody else fossicking around in your frontal lobes and cingulate gyrus, especially if the after-care provided is as horrendous as that which I received.
Luckily for me, I had support workers arranged to help care for me in my own home and so, with the help of a lawyer, I was discharged fairly quickly, bag in medication in hand.
When I was diagnosed I was given ten years to live so now I’ve got six years to go. Gliomas ‘almost inevitably recur’ and ‘are almost invariably fatal’. The surgeon got most, but not all of it due to infiltration, the tendrils that have invaded my brain.
Time to check off a few items on the bucket list. Time to enjoy myself.
I never would have parachuted before the cancer. What’s the worst that can happen? I told myself on the way up in the plane. The chute doesn’t open and you die an instantaneous death rather than a prolonged and lingering one.
Next up, paragliding…