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WE NEED TO TALK ABOUT DEATH AND DYING

Death.  h?

It is inevitable.  It comes to us all.  But we don’t like to think about that.

Why?

Are we afraid?  Afraid to tempt fate, to court the grim ripper for fear he may choose to come too early.  Before we have had chance to live the life we want, the life we struggle for, the life that has eluded us.  For surely the fear stems from a life not well lived, or a life incomplete somehow.

We just don’t talk about death and dying.

And we should.

We should talk about how we would like to die, even if when the time comes we don’t have that choice.

We should talk about how we would like to be buried, or cremated, or not.

We should talk about how we would like to be remembered, leave a legacy behind somehow of the essence of us, so that in death, our lives have some meaning.

I am reading a beautiful book called Lost & Found by Brooke Davis, an Australian author.  The theme is death.  And it is also about renewed life.  But for me, the death part resonates.  Millie, the central character, a 7 year old girl, is not allowed to talk about death, but she is acutely aware that things die.  She does not know why death is a taboo subject.  “It just is,” her father tells her.

My mom was diagnosed at that age of 61 with lung cancer.  From the time of diagnosis to the time of her death took just 8 weeks.  She did not want to die.  She was not ready for death.  She worried she would miss us too much.  I would lie on her bed next to her and she would cradle me in her arms as my tears would fall on her pillow and she would say to me, “I am going to miss you so much.”  She wasn’t prepared.  I wasn’t prepared.  I wasn’t ready.  Four and a half years later, I am still not ready.

When my mom was diagnosed with cancer she was afraid.  She was afraid of how she would die.  She was afraid, mostly, that she would suffocate to death and be aware of that suffocation.  My dad, a devout Christian, caught in the ravaging grip of grief, couldn’t let her talk about her fears.  He clung to the idea that God would save her.  She was one of the good souls, he had said, and God would save her.

For the longest time she couldn’t express her fear.  And so, I sent Dad on an errand on the same day the palliative nurse came to visit and gave mom the space she needed to face the inevitability of her death.  To face the inevitable reality that for whatever reason her God wasn’t going to save her.  She needed time to talk, to prepare.

How will I die?” she had asked the nurse.

Well, cancer robs your body of energy, so you will feel more and more tired.  You will sleep more, and eventually, in my experience, you will slip into a coma like state and then slip away.”

Will I be aware of dying?”

In my experience, not really.”

Will I be struggling for breath?”

No.  Your body shuts down, so your consciousness is shut down first.  Only the very basic human functions will continue.   Eventually, your breathing will just slow down until it stops.”

The relief on mom’s face, to know that it wasn’t a case of her breathing out and suddenly not being able to breath in again.  She will be unaware, blissfully unaware.

A couple of days later we were in the car.

I want “I am Woman” played at the funeral.

We all jumped.

“And I want Sarah to sing Scarborough Fair and Amazing Grace.”

My poor dad looked at her mortified.  We were on our way to her first radiation therapy session.  The cancer had spread to her brain and they had to treat that before they could ever begin treatment on the inoperable tumour-infested lung.

You can’t have Helen Reddy blasting at your funeral.”  Dad said.  Still so much in denial.

“If that’s what you want mom, then that is what you shall have,” I said, my heart breaking as I gave in to the inevitability of the fact that I would be organising her funeral.

And no one is to wear black.  Only bright colours are allowed.

And so it was.  My mother’s funeral arrangements were made in the car, on the way to the hospital.  Thankfully, she found her voice.  Thankfully, she managed to let us know how she wanted to be honoured on her passing.

The nurse was right, my mom did slip into a coma, just as she said mom would, and her breathing slowed and slowed until, at just after midnight on the 8th July, she took her last breath.  It was a funny breath.   A shallow sigh really.  My dad had witnessed it before, in the passing of his own mother, so when mom took it, he said, “This is it girls.”  We looked at him, confused.  And then he said, “Mom, is gone.”  And then we cried, we howled.  But that is grief, and I will write about that another time.

This is about death and how we really need to be talking about it.

After my mom’s funeral at which “I am woman” was played whilst mom was precessed down the aisle, and whilst a slide show of her beautiful, brave life was shown; at which my sister and I both sang “Scarborough Fair” and “Amazing Grace”; and at which no-one wore black, people came up to us and said it was the best funeral they had ever been to.  My mom would have LOVED that!

At the funeral tea, my aunt told me that she didn’t want to get buried in a cemetery, or have a church funeral.  She said she wanted to be buried under a tree, whole, where her body can become one with the earth.  I know that there are a number of humanist funeral directors that arrange this sort of thing.

Yesterday, I watched a movie called “With Honors” in which Joe Pesci plays a character that is dying.  He writes his own eulogy, beautiful, moving.  When he was writing his eulogy, he seeks advice from Brendon Fraser’s character.  Brendon says, “Write about the things you did for which you are proud.”  I think that is good advice.

I’m still formulating my plan.  I have feared talking about death like everyone else, but I don’t want to fear it anymore. I want to embrace the inevitability of it.  I want to be prepared for it and I want to prepare my family for it.  Because I wasn’t prepared to lose my mom, I wasn’t prepared for her death.  And I think if we talk about it more, then we don’t have to be afraid of it, and then we will be more prepared for it, and then maybe, just maybe, it won’t be scary or hurt quite so much.

Do you talk about death and dying?  Are you afraid of it?  Have you got a plan?

Much love,

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Ramblings

The perfect storm

Have you ever had one of those times?  The ones where no matter how well planned something is, everything goes wrong.  Where you have no alternative than to watch your best laid plans all go up in the air and you can do nothing but wait for them to land to see how much damage has been done and what, if anything, can be salvaged?

Four weeks ago I decided we needed a holiday.  Mr D had been working ridiculous hours and Master J was exhausted after a long school term.  We had become disconnected as a family, I had decided, and a holiday in the sun would help us to reconnect.  I hopped online, found a beautiful two bedroomed apartment and booked the flights.  Gold Coast here we come.

A week before we were due to leave Mr D woke up feeling awful.  Not one to make a big deal of illness, this virus gripped him quickly.  His temperature was raging and he struggled to breathe as it attacked his asthmatic lungs.  A day in bed was the only remedy.

The following day I woke to an uncontrollable cough.  No matter, I told myself, I will just rest and all will be okay.  Except it wasn’t okay.  In a horrible twist of fate I ended up in hospital after I developed severe abdominal cramps and started passing blood.  To add insult to injury, and please forgive my candour, I also started my period.  I am a middle aged woman who will be going through ‘the change’ in the not to distant future.  My body has responded in protest to this by attacking me with dysmenhorrea (painful and heavy periods).  There is no dignity in illness. In hospital, I thought I was going to die.

But, like the proverbial phoenix, I was going to rise out of my pit of despair and I was going to take that holiday dammit.  I made it very clear that despite my very high fever, the IV attached to my arm, the fact that a morsel of food had not passed my lips in three days, my rising liver enzymes, the continuing abdominal pain and the dysmenhorrea, I would be getting on that plane the following day.  No-one believed me.

I called home to let my husband know that no-one was listening to me.  Master J answered the phone.  “Mum, I don’t feel well.”  The virus’ tentacles had snagged him too.

The doctor came to see me at 6pm.  “I believe you are going on holiday tomorrow.”

“I am,” I said, trying to sound as well as I possibly could.  A cough was desperately trying to find its way out of my mouth, but I refused to let it.  It burst out uncontrollably.  I looked at her.  “I have to go on holiday.”

“I can’t stop you, Sarah, but you are not well.  Your liver is not well.  I would have liked you to stay in over the weekend, we would have booked a CT scan and some further tests.  We think there is sediment in the duct.  How long have you been sober?”

“Four and half years.”

“You see, these are results we would expect to see in a heavy drinker.   The nurses didn’t believe you hadn’t been drinking.”

I was getting irritated.  I had to get on that plane.  My family felt to me like it was falling apart and I needed it to reconnect, to find each other again.

“I’m going to let you go Sarah, but you have to promise me that you will eat a very very very low fat diet, that you will take it easy and that you will phone my rooms to have these investigations started when you get back.  Make no mistake, this isn’t just going to go away.”

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And so it is that I am writing this to you from our beautiful apartment on the Gold Coast.  We are all still very sick, coughing and spluttering all over the place.  We are unable to see all the amusement parks, or do half of the things that I had imagined when I booked this trip.  I am unable to enjoy that salted caramel chocolate tart that keeps staring at me every time I exit the building and a trip to Byron Bay lasted an hour before we were all too exhausted to take another step.  Mister D and his dodgy lungs are back at the doctor as we speak.

But hey, we have an amazing view of the ocean and the hinterland and in some weird kind of way, we are all together and we are all connecting, albeit through our lack of energy and illness.  It’s not perfect, but I don’t care.  We are all together and that is all that matters.

Much love,

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