Thursday, 30 June 2011

Weather for Ducks

"Lulu, did you see that?" He grabbed my arm for support.

"What? What did you see?" We were walking in the rain in the darkness of mid-winter to find a video our little family could watch together. It was a week or so after being told that Simon's brain was full of tumours. Brain tumours! Six of them, ranging in size from golf balls to tennis balls, somehow left space for him to play music, remember quotes from books he'd read years ago. Not enough space to see everything. Nor to understand everything he could see.

"Ah don't worry, it must have been a hallucination!" he explained. How could he work out what was real and what wasn't? More importantly, "What did you see?"

"A silver man came out of the road from behind that car wheel over there. He was pretty cool!"

"Is he still there?"

"No. He's gone now." He wasn't ever worried. It all seemed perfectly rational to him. In fact he seemed to enjoy what he got to see during that last July of his life.

I just got back from my walk beside the river. Tonight I don't remember seeing it, any of the gums, or any other person exercising themselves or pets. I do remember the cold wet wind chilling my cheeks and blowing through my trouser-legs. It was dark. And I wasn't afraid.

I thought about how Simon and I walked that way as 'the long way around' to buy wine. "When I've gone, you'll keep walking here Lulu, won't you?” he urged. “Now I know why you love it so much," he said on a sunny morning walk. "I should have come on more walks with you. It's beautiful up here!"

By this time, he was pretty heavily drugged to manage the ever-escalating pain in his back and his legs. At least his brain didn't hurt him too. The doctors had given him some medication to control the natural swelling caused from the damage done by the tumours. Dexamethasone! Everything raced when the dose in his body was at his highest. He spoke in rapid breathy stanzas like an excited little boy waiting for his dad to come inside from the garage. His excitement was infectious. How could we be anything but grateful that we could still have him with us? Yes it was crazy. It was completely mad. We didn't always know who this guy was. Our daughter found it frustrating and a little frightening. In a strange way, it was fascinating for me to watch what he could do, and what made no sense anymore.

Tonight I thought about wine. It doesn't taste as good without him so I changed my mind and came home. My memory of us coming out of that warm bottle shop into horizontal sleet-like rain, three years ago, still makes me smile. Simon was a bit excited that day and the lady in the bottle-shop wasn't very understanding or particularly kind. All the same Simon continued to chat away to her, even though she didn't respond warmly.

Back outside in the weather, he leaned in and asked me at the top his voice, "Lulu, did she have a yellow duckbill?"

"Nope. No duckbill!" I smiled up at him.

"I am so glad I didn't say anything to her about it then!"

Wednesday, 22 June 2011

The Instrument of his Passion

Sometimes the lessons we need are fed to us in drip-form. With a little more of the message being revealed when we are no longer sure we need it. Today I learnt what I had been jealous of throughout my marriage.

This morning I woke early. Too early on a Saturday morning to get out of bed, so I tossed and turned until my eyes were eventually ready to take in light. After a late night, it always takes me several minutes for the salty bonds that glue my eyes shut in sleep, to finally break apart to allow my eyes to open. Not moving from my bed, I picked up my book and as I read along, I finally realised what music meant to him and how I fitted in.

I've been reading Anna Goldsworthy’s autobiography where she describes how she transformed herself into a performing pianist. As a teenager it was the music, more than just notes and technique, that became enmeshed into the essence of her being as her life-force. The piano was the vehicle that allowed her to journey through musical flight and her life's highs. The piano created and supported her passion, both spiritually and physically. In developing mastery of the music and the piano keys her obsession allowed her to travel through mundane life activities and sometimes allowed her to avoid them altogether. Practice wasn't drudgery, it was an indulgence that allowed her spirit to soar on a different plain. Some may say higher.

More than twenty years ago I fell in love with a kind, clever, funny and warm fella. These were the attributes I loved about him. He came packaged to me as a generous soul with kind eyes and as a bloke who loved to play guitar and could do so with a level of skill unmatched by most. Later I realised he was more than a guy who could play guitar - he was a musician. The guitar was the instrument of his passion.

During the last year of Simon’s life, when his days were filled with hospital visits and his veins were filled with chemotherapy, he was usually left feeling completely listless and destroyed. There were times he was so unwell, he couldn’t pull himself up to leave his bed, let alone to pick up an instrument. All the same, he continued to yearn to play the tunes that he had playing in his mind. He needed it for his soul and every important thread of his existence.

When he first got sick, we found a silent guitar for him to play in hospital, so he wouldn’t disturb other patients. With all else going so wrong, we knew that he could lose his will to survive if he couldn’t play music. The silent guitar was too heavy when he was very sick but a shiny red, flat-bottomed ukelele, or fluke, satisfied these needs. Sometimes, when it took all his energy to overcome the intense waves of nausea and he was unable to lift his head he would pick or tap the fluke to find his tunes of solace.

During these tough days our daughter and I wandered through the house, pretending we were getting on with our lives, while continually checking on him hoping to ease his pain and burden. None of us really had a life during this time yet Simon, always the optimist, knew he could find joy in the strings.

On one such day, as I wandered around the house leaving him to rest, I noticed something beautiful, that somehow had lifted my spirits and lightened the weighty bar that I carried in my shoulders. Somehow Simon had created a set of complimentary harmonics by gently tapping the fluke’s bridge. The bedroom was full of this positive cloud of sounds mingling within and around each other, complimenting and supporting the notes that diminished to finality, readying the space for fresh new notes that arrived just when they should, in a space that seemed to be perfectly designed for their entry.

My aural image was of pure beauty and a warm-spirit. What I saw was a thin, grey-skinned, bald man laying on his side on top of our bed. The fluke was resting against his back. His too-heavy bottom arm leant against his chest, while his thumb secured the bridge and his long fingers knew exactly where to tap to create this magic. Quietly I entered his zone and found his eyes shut. His face displayed a relaxed bliss I wish I knew. He had taken himself to his place of comfort. He was inside his head with his cherished music. The instrument was an extension of him. His musicality had not been dulled by the poison that flowed into every cell, searching to kill any seed of residual cancer.

May 2011

Wednesday, 25 May 2011

No Time for Regrets

No Time for Regrets
Regrets probably aren’t so bad if you learn from them. Yet for me, the reliving of them brings back that overwhelmingly emptiness that only comes with failure or when you fail someone who is truly important to you.

The first time I saw Mike with the hyphenated, European surname I knew I wanted to meet him and be his friend.  He was tall, dark and handsome, and yet he didn’t seem to know it.  He irradiated warmth and kindness when it wasn’t common among many of the young men I knew. 

As I think about his smile, I can’t help but remember his formidable nose.  A nose that suited his face and gave it strength in a sea of warmth.  Mike’s eyes said hello well before he could tell you that he was glad to see you.  Even when he was feeling unwell he would muster a smile and make all of us feel like the most special person in the room.    

I walked past him in the corridors of the Microbiology department amid all the smells of agar and bacterial exotoxins, completely in awe of how he was always surrounded by his tight-knit group of mates.  Their joy for each other was obvious as they bumbled along the corridors joking and laughing.  Back then, I was always moving too quickly to the next class to work out what they were joking about, but I subconsciously hoped that one day I could be part of a social group who cared so much about each other.  Thinking about this now, I wouldn’t say that Mike was the ring-leader. His role was more like the glue that bonded individuals to the group.  

Fortunately for me, we started to work together almost four years later and became close friends.  Of course that also meant I was a part of that close knit and fun group.  They became my family.  We had a great time at work and even more so afterwards and during weekends. 

Mike remained the unassuming nice guy who quietly looked out for us all.  He was always ready to help-out if we needed it, or just wanted his counsel on life, computers or immunological technique.  This was at the dawn of the personal computer and as the skills and knowledge were being developed that were later used to map the human genome.  Legends of our immunology all graced our tea-room, and
many were interested in our work.  It was exciting because we were young, and as we were working at the frontiers of immunology.

At 18, Mike battled and beat cancer following a variety of treatments.  We all thought it was ancient history so we didn’t talk about it much.  Sadly, 20 years later he suffered all manner of annoying symptoms ranging from severe abdominal pain, no appetite to having to take a pill full of enzymes to  digest food when he did feel like it. He was often really unwell, but never did we think of Mike as sickly.  Adorable, kind and warm - definitely.  He was gorgeous, extremely loving and supportive of all of us, in a non-threatening, avuncular way.   Poor Mike was one of only three or four blokes in a research unit of at least 40 women.  He was a real gentleman.   

Over a period of years of working and socialising with Mike, it became evident his health was waning slowly.  The last time I saw him was during my pregnancy with our daughter.  Having reached a fork in the road I left the Institute and changed my career.   

Later, when our daughter was two or three, I bumped into a colleague from my days at the Institute.  She told me Mike was sick again and in hospital.  Somehow I knew that he was dying and was I frightened that I didn’t know how to react so I put off visiting him.  I didn’t drop everything and go to see him to hold his hand.  I didn’t go and tell him how much I loved him and how he was a dear and adored friend. I should have gone for both him and me.  I will always treasure him for enriching my life and helping me to direct my future towards my goals. 

I allowed my fears to justify my inaction.  I found so many reasons why it was acceptable not to tell him how important and special he was to me, to all of us and to the body of science for his contributions.  The excuses I used were “he may be too sick” or “he has other more important friends than me” and even “he may not be able to see me or even recognise me”. 

I regret, more than anything, that I didn’t go and I didn’t try to see Mike before he passed away.  My regrets are for Mike and for me.  I should have trusted that I am perceptive enough to know if I wasn’t welcome and could make a quick exit.  Whatever else, I should have gone. 

Many years of dwelling on my inability to do the right thing brought me almost as much sadness as Mike losing his life.  He was always so unassuming and so friendly.  I really hope that our friends filled up his final days so he knew how much love that he created on his journey with us.  I really hope that he didn’t wonder who was missing.  More importantly I hope he felt really loved, because he was.  I wish I could have been there for him too.

I had never considered that I was a significant person in his life.    Now, all I have are a few photos.  There is a photo that he took of me that I like to look at because I remember turning around to his voice and smiling at him.  I can’t see him in the photo of course, but I will always remember how it felt whenever he walked into a room.  After hours sitting at the microscope, all alone,  he came by and I turned to him and he caught my affection for him.  It is a beautiful photo for what was between the subject and the camera, far more than the subject in the photo.

Ten years later when my husband was dying in our bedroom I knew I didn’t want anyone else to feel that they couldn’t come and see Simon, even if for just a little while.  So I sent out an open invitation to all of our friends explaining that if they brought food, they could eat with us.  They could stay as long as they liked, and come whenever they could.  I explained that they needed to do what they needed to do so that they could manage their own grief.  During this time, Simon loved seeing everyone, particularly when he wasn’t too tired or suffering.  He told me how he felt like the “luckiest bugger in the world” because all these people would come and spend time with him.  He didn't know if anyone was missing, because he was filling up on what he had, not what he didn't have.  Many people timed their final visits when before he was too sick or too manic.  I respect and admire everyone's decisions to manage their own grief.  There isn't enough time for regrets in our life.  

And yet, I still regret missing Mike in that week when I could have taken some love and caring to him.  And I feel intense sadness for his early departure.  However, I am grateful that I learnt the lesson and am honoured to have friends who did come and bring Simon so much love and care to help him through the tough end of his journey.  

It is now a year and a week since Simon died.  I feel intense sadness for all that he had endured in his final year and a half.  Now I miss him.  I miss the love we shared.  I am glad for him, and for Mike that their pain has stopped.  They both loved every bit of life and appreciated every day they had.  We can all learn from that.

Drafted 27 September, 2009 (1 year and 1 day after Simon’s funeral)

Monday, 23 May 2011

Landmarks of a death

Landmarks of a death -  November 2009

You often hear people talk about what they want to leave behind when they die.  Before now, this seemed like a good thing to think about.  Leaving a legacy of positivity that could be continued in your absence seemed like a great ambition.  I learnt how it happens through one of the toughest lessons of my life. 

Simon died a little more than a year ago, and he died majestically, in a way that I wouldn’t have thought possible had I not been there to witness it.   While coping with indeterminable testing and treatment regimes his raison d’ĂȘtre was constant: he had too little time for anything but love.

Before he knew his life was going to end, and end quickly, Simon philosophised about loving, but frankly he was so busy doing what he loved, he neglected sharing enough of himself with us.  His death sentence changed the focus so that he could give more of what I needed to remember why I fell in love with him, while balancing his passion for creating and playing music.

Simon hasn’t been far from my thoughts for twenty years, this month.  Yet how I think about him now is so different to before, when I had never contemplated that he would die so soon, before we had finished being proper parents.  Fortunately I am able to remember how he was in his life, but the trauma of his illness and his death is so big in my memory it blots out most of what came before.  These two times are very separate.  Before the back-ache that was “metastatic cancer of unknown primary” and “afterwards”.

The legacy of his life is in the future of our daughter, the music he left behind and the memories stored by everyone who loved him.  There is still so much sadness.  It usually surfaces and takes over my resolve whenever I realise how physically close I am to the landmarks of his death.

Only yesterday, I woke up feeling almost buoyant.  Instead of pulling myself out of bed, I launched myself into the hunt for delicious food for a meal with my cherished friends, Jane and Margie.  Excited I had found fabulous pink spinach for our salad I decided we also needed bubbles and perhaps a full-fruity red with our meal.  As I waited for the lights to change to cross the highway to the bottle-shop, all of sudden I realised I was standing opposite the funeral home, which was the last place and time I saw Simon.  Tears flowed down my face without warning.  Sobbing shook my body while I stood, staring at the wall of the chapel where I last touched his body.  While the traffic waited for me, I stood frozen at the corner of Jarrad Street and Stirling Highway, a block away from John Curtin’s home.  Unable to move, the lights changed back to the red man while I managed my reaction to this memory-bolt and regained my composure to get back to the life in front of me.

There have been many very tragic moments during Simon’s illness but identifying his body before taking him to the crematorium, was close to being the worst of all.  The face and body that lay so still in the white satin-lined coffin undoubtedly belonged to Simon, but it was very different to him in life.  It was a week from the last time I saw him, after he took his final breath and finally relaxed.

The funeral director explained that I needed to verify that the person in the casket was the person I expected it to be.  It was my job and I needed to do it alone, yet it took all the personal strength and will I had left not to run out of that lonely chapel squealing.  I could barely contain my hysteria after touching his cheek, realising my darling Simon had been lying in a refrigerator all week.  I forgot to breath for almost a minute before starting to gasp through my heaving chest.  Eventually the rhythm of my breathing returned to normal as I paced up and down between the pews.  Still not sufficiently composed to return to the others I sat down at the back of the chapel.  I was all alone – except for Simon’s body, flowers and the casket.  All the same I worked on repackaging the emotion that had exploded out of me, like of flock of pigeons leaving their coops on race day.  My control had been shattered and was scattered around this cold, sad room.   “How did this ever happen to you Simon?  This should never, ever have happened like this.”  Maybe choosing a local funeral director wasn’t so clever after all. 

By the time the lights had changed again and I was able to cross the highway, my attitude had completely switched around.  Now I had begun to feel comforted that this was where I last saw and touched him. 

I have said if before, but Simon was very well loved by many.  Today I visited Simon’s tree that was planted for him and Ella.  It came about from the positive influence of our friend, Libby.  While it isn’t yet big enough to sit under for shade, it is growing fresh new leaves and developing a strong woody trunk.  It overlooks the river to the south of our home.  

Before we lost Simon, he loved to walk around our neighbourhood, following the path I have been taking every morning for the past ten years.  He was always active, but walking was secondary to riding his bike or swimming in the ocean.  However in illness during his last few months, walking was the only activity left that took him outside.  It had become his new obsession.  So much so, there was a period when he would walk for several hours every day, with anyone who had the energy to keep up with him.  So that I could get some time to run our home and work, we had a roster of friends to keep Simon safe and happy during the day. Within minutes of their arrival, he would ever so politely ask if they would like to go for a walk.  Fortunately, rain was never a problem for anyone.  If he wanted to walk, we put on a raincoat and walked.  During these walks Simon had told me several times how he wanted a bronze plaque to commemorate his life.  “I just want my name and the dates, Lulu” he said.  “And just the line from the song, you know the song.  Dragons Fly.  You know just “something else in disguise””.  This excited boyish conversation contrasted from the careful, measured Simon I shared the previous twenty years with.

His plaque sits on the limestone wall overlooking Freshwater Bay with a hundred other deeply-loved ex-Mosman Park residents. This is north-east of our home.

Regardless of how I go to work, I pass by a major landmark.  The one I travel past most often is the cemetery.  Sometimes I get past without thinking about Simon.  Sometimes if I get past without thinking of him there is guilt that already I don’t think about him and I panic that this somehow makes his life less meaningful.  Fortunately there are more and more times when I get past without so many tears that I need to tidy my make-up before I walk into the office.  Mornings are always worse.  Living in the between of then and now, is a strange place; sad and illogical.  But mostly sad.

If I head off to drive by the river, it is the blue sign leading the way to Hollywood’s Palliative Care Unit. This is the landmark of green skin, nausea, great strength and determination shown through the six cycles of monthly chemotherapy.  And then the final month of his dying.  My memories have these bizarre moments of his wakeful times, when he listened to music or ate jelly and icecream dispersed between the weeks of sitting beside his bed (or lying on a stretcher beside him) with me listening to his breath get slower and irregular until the worst of all of his last hours.  And then there was the peace that came at the end of all of this torture.

The ocean is always good for the soul.  And I think Simon’s soul is out with his dragons.  Mostly the twinkle of light on the top of the ocean brings joy, it is like the clink of a glass celebrating all that is good.  But driving the route that we took behind the hearse remains devastating.  I didn’t know that until last week though.  Perhaps it will get easier.  For now at least I take alternative routes.  If sadness gets triggered too many times in a single week, my resources for resilience run out and struggle follows.    So I am going to stick with the shine on the ocean….