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Saturday, April 4, 2009

Melbourne (Part 3): Tales from two hospitals

by Nicole Skeltys

The Bliss Button

A friend of mine who worked in the drug addiction field told me ages ago about a very simple series of medical research experiments where rats (rattus norvegicus strain) were given two buttons to push with two distinct outcomes: one button gave them food, the other gave them doses of cocaine. If the survival instinct is as hard-wired as popular versions of Darwinism would have us all believe, then you'd think that the rats, way back in the traffic jam on the evolutionary turnpike, would prefer to chow down on some rodent nutrients. This would enable them to bulk up and continue to cane it past other muroids, and even eventually give the bird to homo sapiens, against which they apparently currently hold the number two spot in the 'most successful mammal' race.

But no. Faced with a choice between life and bliss, the rodents chose bliss. Over and over again, they jabbed their snouts against the cocaine button and forgot all about dinner. And breakfast. And lunch. Eventually, they moved on to that rat disco in the sky.

I related strongly to those lab rats when I was wheeled back into my hospital room after the uterine fibroid embolisation operation. This is whats called a 'day procedure' which starts with a 90 minute suite of pelvic pokings and manoeveurs under local anaesthetic, and ends with wobbling patients trying to follow the 'exit' signs, 24 hours later.

Wheeled into my hospital room after the procedure, I was shown a device which looked a bit like a TV remote only it was hooked up to a drip. I was told that if I hit the green button, I would be given doses of morphine. But not to worry, they were controlled transmissions so I couldn't overdose, no matter how many times I hit 'play'. The local anaesthetic was wearing off fast. Even before the nurse had left the room, I started to jab at the 'morphine play' button.

For the rest of the afternoon and all that night, I lay semi-conscious with no more mobility or motivation than a potato. My only foray out of my heavily doped reverie was courtesy of the pre-programmed blood pressure machine, which mechanically tightened its velcro grip on my arm and squeezed me out into some kind of hospital gown awareness at hourly intervals. I had (perhaps recklessly) agreed to be part of a pain control research project, so when my eyes slit open as my upper arm lost feeling, I would then behold a lady research assistant with a quiet lisp leaning over, handing me a pen and asking me gently to rate my pain on a graph. I remember looking very hard at the paper, trying to understand what was going on, then looking pathetically at the assistant as her hand hovered anxiously over the long black line. "There'" I said, gesturing as much with my snout as my hand. She reached over and obligingly did a smart cross right about where 'eight' was in relation to 'ten'.

I kept snouting to 'eight' for what seemed like a long time. I hit 'play' for hours with total abandon. I got as high as a kite. At one point, I remember my surgeon and his team swimming into my field of vision, asking me questions, and I more or less just grinned. When the pain eventually started to lessen after several hours, I pointed to the camera next to my bed and asked one of the nurses to take a photo of me toasting the bliss button with my medicine cup. When she looked startled, I explained "I'm supposed to be on holidays, so I better take some happy snaps of my adventures."

By the time I was due for discharge from The Alfred the next day, I had not eaten for 48 hours and I had successfully self-medicated myself into a glowing, spongy blob. But I realised then no matter how high I got, the tracks of the operation still throbbed away with varying intensity. The morphine certainly dulled the pain, but only up to a point; after that, all it did was separate the thinking and the feeling parts of me. As Kerry came, gripped my arm, guided me towards the elevators, then down to her utility truck in the carpark, I said "This is what its like to be a junkie!". She laughed, but I was serious. As we slowly nosed through Punt Rd traffic on our way to my favorite Vietnamese eaterie in Richmond, I looked up at the pale blue Melbourne sky and thought this is how the world can be so beautiful and serene in its touch, while in the distance you can always feel the wounds.

Emergency roadside assistance

My GP prescribed some opiate based painkillers to help me through the next few days, a brand I remembered fondly from the last time I was recovering from an operation to remove an alien growth - my breast cancer tumor of 2 years ago. The tablets gave an optimistic shine to everything, so much so that in a couple of days, I felt well enough to contact Graeme and Eugenie - who have acted towards me over the years with the support and kindness of adopted parents - and said I was finally going to make it up to Canberra to see them. As luck would have it (or synchronicity again), their son Alex was in Melbourne and was driving up that Tuesday, a week after my operation, and I could get a lift with him.

As we pulled up outside Graeme and Eugenie's two storey townhouse that night, I felt a knot of apprehension form in my stomache. I knew that Graeme was still very disabled from his massive stroke five months ago, was confined to a wheelchair and needed 24 hour assistance with all personal care and living tasks, which was provided largely by Eugenie - who was now as much a nurse as a wife. When Alex and I bustled into the loungeroom with our baggage and Thai take-away, I saw a figure with thinning grey hair stooped over in a wheelchair and my heart missed a beat. I bent down and gave him a hug and kiss. To my relief, Graeme looked pretty much the way he had always looked, a man with a sturdy frame and kindly, intelligent eyes. The big difference was, though, his arm hung lifeless in a sling, and when he saw me, he didn't smile.

Later, Eugenie explained that one of the many side-effects of a right brain stroke was that you lost the ability to register facial expressions, and your ability to express your own emotions with facial movement and rising and falling vocal inflections was also lost. This was one of the many things that Graeme was having to learn all over again. Over the next few days, I also realised that my old dear friend could indeed return to his former animated and witty self, but that these periods were often cut short by the chronic fatigue that accompanied the stroke. Graeme would suddenly become very quiet and then start to nod off in his chair, or sometimes he'd gently ask Eugenie to help him back into bed.

After a few days of hanging out in the loungeroom, broken only by trips to physiotherapy and medical appointments, I think all of us felt a heaviness building in the air. At one point Graeme looked at me over the dining room table and said in a voice that carried the shadows of many nights waking up and lying still for hours "If I thought I was never going to improve beyond how I am now, I'd rather die."

I just nodded and glanced over at Eugenie. We understood. Graeme may be on powerful anti-depressants, but the prospect of a life where you can't even get yourself out of bed in the morning, where even the most basic of independent living tasks was beyond you, a life of infant-like dependency on another human being - who wouldn't feel betrayed by their mortal coil, who wouldn't want to shake it off? I understood, but my heart grew so very heavy with that understanding.

We decided to break the routine by making a trip to Mt Darragh, a beautiful part of the Snowy Mountains range where Graeme and Eugenie had bought a plot of land several years ago. They had almost finished building their dream home there, what was to be their retirement house, when Graeme suddenly collapsed to the floor one night in early October and for the next five months, the center of their lives was dramatically relocated to the wards and rehabilitation units of Canberra hospital. Somehow, through all of this, Eugenie had had the presence of mind and fortitude to take over the remote supervision of the final stages of building, and the house had finally been completed. Graeme had been there once since his release from hospital, and they both found the beauty and deep quiet of the land spiritually healing. It was a two and a half hour drive to the property, but we were all keen to go.

The trip down was uneventful, and Graeme chatted amiably all the way down, his spirits already lifted at the prospect of seeing their gorgeous patch of nature again. However, when we finally got there and helped Graeme into the bare loungeroom to look at the view, he quickly grew quiet - even more quiet than usual. After a while he said weakly "I don't feel well. I need to lie down." Both Eugenie and I felt alarm - there was no furniture in the house, nowhere to lie down except in the car. We took Graeme back out to the Subaru, Eugenie all the time probing for symptoms, asking Graeme if we should take him to the local hospital about 20k away. He just kept repeating that he wanted to lie down, and after Eugenie had placed him back in the front seat and tilted it back, Graeme quickly fell asleep. We wandered slowly back to the house.

Eugenie and I ate our sandwiches on the front patio and stared out over the silent eucalyptus covered ranges, undulating from deep green to misty blue in the distance. As we talked, we were both acutely aware that Graeme was missing out on the very healing wilderness experience he craved. The situation felt hopeless. I felt a sense of crisis in the air.

Suddenly a sound came from the car. It was the mobile phone, which Eugenie had left in the car - we were both startled as reception was so patchy out here. Eugenie ran over to the car and reached inside to grab the phone. As she walked back to the house, I could hear her puzzled conversation: "Roadside emergency assistance?? No, I didn't place a call for help- who is this? RACQ? I'm sorry, but you have the wrong number, I'm not even in Queensland, this is a Victorian number!" She hung up and looked up at me with surprise - "That is so odd - why would the Royal Automobile Club of Queensland think I called for help? And I can see by the missed calls that they've tried at least 3 times to reach me!"

At that moment, I got goosebumps and chills down my spine. On the drive down, I had thought about my deceased parents, as I often did. How I had always felt that they had something to do with Graeme and Eugenie reaching out to me like I was family, given they were no longer around on earth to provide that kind of protection anymore themselves; and I wondered vaguely what they would think now, when my adopted family was struggling to keep going. Mum and Dad had lived in Queensland, I grew up there. The fact that the bizarre offer of emergency roadside assistance came from Queensland, when Graeme was so unwell in our car, struck me like a call from heaven. No doubt I was still under the sway of the synchronicity book I had recently finished reading, and all the other coincidences I had been experiencing over the last 3 weeks, and no doubt I very much wanted to believe in guidance from the beyond, but the call filled me with a strong sense that help was on its way.

When Graeme woke up, he felt much better, and even started to apologise for "mucking up the afternoon". We shushed him, enormously relieved that he was ok. and bundled the wheelchair and commode back into the car. The drive back to Canberra into the fading light of the afternoon was spectacular - the sunsets in the high country of Australia are amazing, a fresco of saturated gold, pink and purple clouds swirling across ultramarine - the acid trip skies make up for the parched monochrome of the scrub and pastures that crawl underneath them. Graeme and Eugenie chatted all the way home, and I realised with another small chill, that I had dreamt this scene earlier, I had seen this sunset in a vivid dream a week ago.

The journey to Mt Darragh felt like a turning point. For the remainder of my trip, Graeme's mood seemed, on the whole, to have improved. On the last day before I had to leave, Graeme and I spent the afternoon absorbed in doing Tarot spreads, a passion we both shared. That evening over dinner, I asked Eugenie if she'd like her cards read but she said no, she only liked to consult the cards "When I am feeling optimistic. I'm afraid I am not feeling so optimistic right now." Graeme turned to her then and urged: "Now love. We have to push on. Make the best of the situation. Onwards and upwards, right?"

Wisdom McNuggets

A couple of days after the fibroid operation, I had decided that I was going to be alright. MOFO would surely shrink and stop frigging around with my innards. Surely I could go back to the States and not worry about needing any further medical attention. I hopped onto the internet, found an amazingly cheap flight to LAX on 15 April, booked it; booked another getting me to Pittsburgh, arriving early hours 16th. There. Done. No going back now. I eagerly emailed Tanya with the news. T wrote back excitedly, enormously relieved to hear I was indeed coming back and that I felt confident I would be fighting fit again soon.

How could I not go back, when I knew there were so many good people egging me on? Scott told me that he and T had done a little candlelight ritual and prayer the night before the operation. I was extremely touched. His parents and Granny, devout Christians who lived in Butler, just north of Pittsburgh, were also praying for me. Our 45th St neighbors, Tim and Jim, sent healing energy my way (Tim is a reiki practitioner). Americans I don't know sent kind responses to the last blog post. Charlie called on the morning of the procedure to wish me well. While I will miss my friends in Australia terribly, the tug to go back to the US, to Pittsburgh in particular is still strong. Made so much stronger by the empathy and support of Tanya, who has kept the faith that "opportunities will present themselves, we'll be ok!" - and our small, but growing, circle of warm-hearted American buddies.

A couple of days ago, my faith that MOFO would eventually cease to engage in lower abdominal delinquency got its first boost. The MRI showed the fibroid - creepily, by far the biggest object in my lower body - completely sapped of blood, upon which it had been feeding and growing, vampire like, for goodness knows how long. My handsomely bearded interventional radiologist looked up from the lurid 3D image on his MacBook that we had both been craning over, and announced that the operation had been "perfect". He leaned back in his office chair and explained that I could expect to get symptom relief from organ pressures in about 4 weeks, and after that there was every likelihood that MOFO would continue to slowly wither for up to a year. He stood up, and we shook hands: "Good luck in Pittsburgh" he smiled, and then added in an accent more suggestive of a bloke from the bush than a well-heeled 4th Avenue specialist "Cheerio then!"

That night I started cleaning up my backyard studio, getting ready to vacate again, this time for good. I peeled off all the wall posters, most of them advertising events I had played at, or CDs I had released over the years. I stared at my old analogue synthesisers, all stacked up in a pile now, getting ready for their transfer to live with their uncle Byron, a super-nice guy with whom I had written TV and other scores over the years. Byron would give them the love and attention they deserved. Still, I felt a wave of sadness and nostalgia. All the intense times we had shared, how closely their circuit boards had listened to my yearnings and channeled them mysteriously into unique sounds. And this room had borne witness to the hatching of so many creative projects over the last seven years, the last, and perhaps the craziest, The Jilted Brides album and subsequent adventures.

On one part of the wall near my workstation, I had pinned up various motivational images and texts, something I had done shortly after I had received my cancer diagnosis two years earlier. One of those was a photocopy of the summary pages from "The Secret", a 'positive thinking' book that was then just starting to explode in popularity around the world, and which several friends had urged me to read. As I peeled off the pages, I now cringed at some of the New Age exhortations - reduced to statements so simple and often so fantastical that they were very hard to take seriously "You attract what you think about." "See the good things in people and you will get more of them." "The mind can heal the body". But at the time, I didn't want philosophical treatises or a full, balanced meal of cognitive therapy mixed with oncology research statistics. I wanted wisdom McNuggets, easily digested globs of hope, deep fried in magic. Something that would convince my brain that everything was going to be ok as quickly as non-complex carbohydrates would convert into a sugar rush.

Back at Mt Darragh, I had shared a wisdom McNugget with Graeme. He grew more and more quiet as we stared out at the property he could see but was currently unable to walk around. I instinctively kissed him on the head and grabbed his hand. "Everything is going to be ok" I had said, with some force. "Things unfold at their own pace, often not at the pace we would like, but at the right pace. I know it will take a long time, but you will pull through this." Graeme squeezed my hand. "I know" he said, but with an expression I found hard to read. "I know everything will be ok".