Closing Pandora's Box

Yesterday at the hospice my colleague and I started talking about the pornographic industry. Though initial parts of this conversation maybe somewhat crude and explicit, the points raised at the end are extremely important and thought provoking.

I just want you to concentrate on what he said about rationalising the irrational to make it acceptable. Come to think of it, it happens a lot in today’s society. We are quick to find rationale for things that really shouldn’t be rationalised thus allowing us to brush those monsters away from our thoughts. Why? Why do we allow such things to happen?

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Title: Nobody’s home – Avril Lavigne

The men, the women, the children walk
In a line, on the side of the dusty track.
Feet scraping, shoulders hunched, in silence, no talk.
Left, right, left, right, left, right, there’s no going back.

Some carry their lives in bundles, on their heads, their backs or hanging by their side,
Under the burden of memories, others carry themselves from falling to the ground.
Their shadows spill around them, forming dark puddles where they collide
Left right, left right, left, there’s no turning around.

They are  like soldiers, they are martyrs, each one an exile,
Marching in suits starched with mud, others with dresses torn.
Feet hurting, cuts in skin that is still fragile.
Left, right, left, right, it’s behind, a cause forlorn.

Where are they to go?
Left, right, left, no rhythm in their feet.
The eyes of the world are on them, what do they have to show?
Left, right. Maybe one day  they will be back, they are not yet beat.

Nas - (March 2011)

This poem I wrote after a 3 year drought of poem writing and so thought I’d share it with you.

*****

“Most of the patients here,” she said. “Suffer from terminal illnesses and disease. Many have been told they have limited time to live.” It was another day at the hospice training. And we were having a group discussion. “I want you all to get into pairs and threes if needed, and discuss what you would do if you were told you had a short amount of time to live?” I ask you that question,

What would you do if you were told you would die soon?

“It’s important because many of us never think about it. And I think we should ask it because it reminds us of our mortality.” She said after the discussion.

*****

Many people in the Middle East, in New Zealand, in Japan, were forced to ask themselves this question. There are people living today, who have the shadow of death hanging over their shoulder and they just do not know when their counter will stop counting. We’ve all heard and seen pictures of the death, the destruction, the suffering those people are going through. We’ve all heard the stories of poverty and persecution some people are a victim of each day of their lives.

When you jump into bed tonight, just spare a minute for those people, who do not have a bed in which to to sleep. Think of those people who will be resting their head amid the sound of gun fire. Think of those people who will be cuddling up against rubble. Think of the elderly, the children, the sick, the injured. Think of those that have lost brothers, sisters, mothers, fathers, husbands, wives, sons, daughters and friends. Think of them and say a prayer.

Please do give generously to those charitable organisations that are providing aid to those in need to the best of your ability.

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Title: Better Days – Goo Goo Dolls
Picture 1, showing a girl walking with a bag through rubble taken from here.
Picture 2, showing a woman prisoner taken from here.
Picture 3, showing a frail man laying taken from here.

This post I initially started writing back in February. Today I thought I’d sit down and just get it done.

*****

Her: My granddad is ill, and the doctors have said he’s about to die.
Me: I’m really sorry to hear that.
Her: I don’t want him to die ;(
Me: Everyone has to die some time. Maybe it’s just his time. Maybe he’s waiting for you give him permission to go.
Her: But I don’t care. I’ll miss him so much.
Me: You’d rather he suffer?
Her: ;(
Me: Has anyone told him what the doctors have said?
Her: No. We didn’t think it would be good for him.
Me: Why not? He knows he’s ill, maybe it would be better if he be told everything. At least that way he could start to prepare.
Her: But I don’t want him to go!

~ Sometime in late January

*****

Him: I’m sorry I’m late.
Me: Don’t worry about it. I’ve only had to deal with a hugely long queue, do so much washing up, and anyway, you’re always late so it doesn’t really matter. But why are you late?
Him: *shakes head* My cousin passed away in the morning.
Me: Oh, I’m so sorry to hear that man. What happened if you don’t mind me asking?
Him: He was sitting there with his family. And just started having a fit. Before anything could be done, he was gone.
Me: That’s horrible. How old was he?
Him: Only 16.
Me: Damn. Only started his life as well. And then this happens.
Him: He was an only child too. His parents were so distraught.
Me: *I thought of Charley, she too was an only child. Her parents were left in such a bad state after she passed away* I can only imagine. It must be so hard on them.
Him: And you know what it makes me think? What’s the point of it all? What’s the point of life? And God? Only 16.
Me: I know. It must have been just so unexpected. When was the last time you saw him?
Him: Ummm about 6 months ago. No Christmas, so 3 months ago.
Me: Life’s such a bitch sometimes. Were you guys close?
Him: Yeah sort of. He used to look up to me as a role model. Do things I did etc etc. But damn it really makes you wonder.
Me: Yeah reminds you just how unexpected the future can be, and just how mortal we are. Would you like a hug?

~ Last week

*****

When I started my training for working at the hospice, along with the introductory pack we were also given a list of books that we might find worthwhile reading. Among them was a book that I posted a quote from before. I got this book from the library in November and finished reading it a few days ago. The book I am referring to is Intimate Death: How the dying teach us to live. This book is, I can honestly say, amazing. Marie De Hennezel takes us on a short journey to meet with terminally ill patients, many of whom initially wish to end their lives. That is, until they meet Hennezel. During their meetings with her, and the love, affection and concern she shows allows them to discover something deep within themselves, a hidden strength, a hidden desire to live another day, week, or month.

The book is extremely inspiring; full of accounts of people who, in some cases due to no fault of their own, are condemned to live a life of very few days. There was one patient in particular who, despite being unable to move at all except her eye lids and one finger, was full of life and wanted to live. Daniele is young (early 20’s I think. I forgot to write down her age) and suffers from amyotrophic lateral sclerosis¹, a neurodegenerative disease caused by degeneration of the motor neurons. Motor neurons, for those of you who are not familiar with them, are the nerves that control all our voluntary movement. This includes smiling, talking, moving your body parts etc. Her condition is so severe that she relies on others to turn her head after a while to prevent her from swallowing her own tongue and choking on it. The only voluntary control she has is the movement of her eye lids and the ability to move one of her fingers. It is with this finger that she communicates with the world through a type writer. There are many moving scenes with her, but I want to share just 2 of them with you.

*****

Daniele is laboriously picking out the letters on the screen. I bend over to look. In this position, half-lying on the bed beside her, we are very close. She says that makes her feel good.

She always wanted to be given lots of love, and now she is getting it in abundance. But it is so difficult to receive it. She talks about her family’s love, and that of her friends and those who take care of her, as “a fountain from which she doesn’t know how to drink,” and she adds, “Perhaps you have to learn to become a little child again, humble enough to accept the gift.”

And this is not easy, because Daniele was the absolute opposite: she loved to give egotistically. Knowing how to receive requires abandoning oneself, letting go, an attitude dramatically opposed to the way she’s always been. Will her current journey lead her to explore this fallow ground?

“What kind of journey is illness dragging us through?” She often refers to this idea of a journey. For her, the whole idea of going forward, of moving, is primordial. How can she live in her paralysis except by moving psychologically?

Fine-tuned and intelligent, she has decided to take up the challenge of this illness. “I can tell you my weapons: Avoid all comparisons with the past and learn to live this as a particularly long and difficult passage. You see, I don’t know how many years the ordeal will last, but there are difficult lessons, and they need time.”

Sometimes Daniele cries. But tears run down her face, which undo us.

“I didn’t let the emotion out before, but now that my virus has taken my speech and my muscles, I can’t keep it in anymore.”

She writes about just how difficult it is to be there without voice and without movement.²

Movement as well as talking is one of the most primitive of things. We don’t even think about moving, it just happens. Can you imagine life without it?

*****

Baths for bed-ridden patients. Daniele is given a bath:

I wait for the staff to get her into bed and finish what they have to do before I go to her. She’s relaxed, bright-eyed, ready to write.

“Being washed can be like a party – lots of sweet smells, massage that makes you feel like you’re being caressed, peals of conspiratorial laughter.” And then: “Talking about pleasure, how could I never have noticed that moving is one of them? Will I ever get it back, or will it always be a matter of some kind of complicated exercise? Movement is the most primitive pleasure there is – you have to undergo such ordeals to find treasures you never dreamed of.”

When I left Daniele, all I wanted to do was go and run barefoot in the grass like a mad thing. Get drunk on movement! I took my car and went to the park at Sceaux. It was warm, and I realized that the days were getting longer. On the big lawn in front of the castle, I took the most immense pleasure in running, spinning in circles, feeling the warm, damp earth under my feet, and I said thank you to life and to Daniele for such a conscious flash of pure joy.³

*****

This book taught me a lot. It taught me the importance of living. Daniele’s example especially was heart-rendering. Despite being able to do very little, she still enjoyed life. Yes there were periods when her disability left her drowning in tears she was unable to wipe away, but even then, her positivity was awe-inspiring.

Many people are scared to break bad news to extremely ill loved ones because they are afraid the effect it would have may be detrimental. ‘We think we’re protecting the person who’s dying , but aren’t we first and foremost trying to protect ourselves? What do we know of the innermost feelings of the dying? Do we not underestimate their capacity to face things squarely?’⁴

For anyone who feels they have forgotten how to live, this book will show you just how great life can be and how much we take for granted. I would honestly recommend it to each and every person, because death is something all of us have to face. This book will just make it a wee bit easier understanding it and give you the ability to aid the dying.

We can’t escape death, but we can live while we have the chance. ‘Spend the afternoon. You can’t take it with you’.⁵

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Title: If I die young – The Band Perry
Picture 1, showing running barefoot on the grass taken from here
¹More information about ALS can be found here
²Intimate Death: How the dying teach us to live, pages 121-122
3Intimate Death: How the dying teach us to live, page 123
⁴Intimate Death: How the dying teach us to live, page 13
⁵Annie Dillard

When death comes
like the hungry bear in autumn;
When death comes and takes all the bright coins to buy me,
and snaps the purse shut;
when death comes like measle-pox;
when death comes like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth
tending as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it’s over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it’s over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.
I don’t want to end up simply having visited this world.

“When Death Comes” – Mary Oliver

*****

Then…

There were times when I screamed out to God. It’s ironic isn’t it? When we are happy and have no need whatsoever of calling Him, some of us are inclined to think of His presence as an intrusion. Go to Him then and He would take you in with open arms and make you feel welcome. But going to Him when all help was lost and you’d be faced with a closed door and silence. Such loud and echoing silence, that could drive you mad. All you would hear was your own voice, full of desperation and need being thrown back to you. Was He ever there?

Then something happens, or I hear something, or see a picture, or visit a place and memories flood back like a gushing river. Every single particle of ‘rationality’, ‘logic’ and ‘common sense’ is swept away by tears of grief. Clean and honest tears. Bathing myself in self pity is something I find so disgusting. It makes me cringe to think to think the bubbly Charley I remember, whose happiness was contagious and who was always overflowing with life has now become someone who brings nothing but sorrow. If she were to see me now, what would she think? And that brings me onto my next point.

Promises made with the dead while they held our hand, walked beside us and shared the same air to breathe as us are all well and good. There are many promises I will never forget, promises that I will keep with me forever and  will try my best to fulfil. But there are times when this so called ‘respect for the feelings of the dead’ brings me doubt. Sometimes when people say “is that what Charley would have wanted?” or “Charley wouldn’t have liked you doing such and such,” I wonder whether it is really just them using her name to say a piece of their mind, to vent their frustration at my never-ending sadness, or to have their way. I know it’s wrong of me. Their intentions are pure, they don’t mean it that way. But that momentary flash of desperation, of exhaustion and annoyance in their eyes makes me wonder. I hope I never am guilty of saying it that way to anyone.

At the beginning I used to be so afraid of going all those places Charley and I used to go, the walk through the parks or taking in the view of London from the top of Shirley Hills. But over the last year, I’ve visited the park many times in the depths of the night, and despite a few early incidents it wasn’t as bad as I had expected. Her absence wasn’t any more intense there as it was in other places; it’s not confined to a particular place. Her absence is like the distribution of air, it’s spread everywhere. It’s like that, I feel it while I’m sitting alone on the bus or I feel it when I’m feeling sad and in need of someone to talk to for example. But even that isn’t entirely true. There is one place where I feel it the most. Me. I miss her hugs.

*****

Now…

Tomorrow will be exactly one year since she passed away. ******* Cancer. I was speaking to a friend recently and they said to me, ‘How do you think Charley would feel knowing she was the reason behind your grief? Do you think she would want you to suffer endlessly because of her death?’

That made me think. Yes, I still do miss her, yes I still feel the emptiness from time to time, but it’s time I let it go. It’s time I came out of the shell I have been hiding in, wallowing in my sorrow, and felt the warmth of the sun on my skin, felt the refreshing rain and tried to truly enjoy happiness and all the other wonders of this life. On new year’s I was recovering from a very long day, getting rid of all that exhaustion that I completely forgot about Charley. When I finally realised, finally remembered, it was much more than a fading memory. It would not be right for me to call it a meeting (that’d get me locked up), but it was as if the armour of sorrow which had confined me for so long was removed. So much easier to breathe, so much easier to move. There were no tears, and that I think that is why I could see properly. My eyes still need time to adjust but it’s a beginning.

Have you ever said, ‘tonight I must get a good sleep because I have a long day tomorrow,’ and found you sleep very little? Have you ever said ‘let’s talk. Now’s the time’ and noted how silence ensues? Maybe if you desire something too desperately, you may not be able to get the best of it. Is that the same with the death of a loved one? Wanting so much to keep their memory alive, to remember each and every detail you find yourself looking into a dark and dingy hole which drags you in. A bit like a black hole. In the same way, I’m led to believe God was there all along. It was my own frantic screaming which stopped me from hearing that voice of help I had relied my last hope on. God gives to only those who have the ability and the willingness to accept. I was not ready to accept, I was not ready to listen and it was my mistake.

A few days before she passed away, Charley asked me find and print out the poem shown above. Another patient who was reaching the end of his life had told her about it and said they’d discuss it together when she had read it. They never got the chance, he passed away that night. When Charley finished reading the poem, with tears rolling down her beautiful face she said, ‘It doesn’t sound so bad having read that. Are you afraid? I wont leave till you say goodbye’. But I never got a chance to say goodbye. I was reminded of the poem while at the weekly hospice training, and it brought back sore memories. Am I ready to say goodbye yet? I don’t know. =/.

Reach – S Club 7.

We used to sing this song at school back in year 6. It was our song. It is now the first song on my playlist and I thought I’d share it with you.

I read this quote a few days ago, and it really hit home and really made me think:

If you focus to much on those you have lost, you’ll end up pushing away those that are left. – Unknown²

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Title: Iridescent – Linkin Park.
Picture 1: I have had this picture on my computer for a very long time, and so no longer have the link to it.
Picture 2: Same with this picture.
²Quote from http://www.boardofwisdom.com/

The father of a guy I work with regularly passed away in the early hours of the morning. A few days ago Marshmallow’s grandfather passed away. Earlier this year it was Bubblegum’s friend, Charley and my great aunt. The list is endless.

“Would you like some tea?” He asked.

“No thanks, I’m not much of a tea drinker,” I replied.

I paid a visit to his house to offer my condolences and as I looked through his eyes into the depth of his world, I caught a glimpse of the shadow of sorrow. I didn’t really know his father, so just listened to the other elders talking of the deceased. It reminded of something I read a few days ago in a book recommended by the hospice. The book titled, ‘Intimate death, how the dying teach us to live,’ is written by Marie De Hennezel, a psychologist who worked among a palliative care team in Paris, ‘tells us how to deal with death and talk to the dying – how to avoid despair and find the strength to confront and accept the end’ based on her experience. I’ve only read the forward and the preface and this following thought-provoking quote was something I’d like to share:

Even when one enters final helplessness, one can still love and feel loved, and many of the dying, in their last moments, send back a poignant message: Don’t pass by life; don’t pass by love. The ending of the life of someone you love can allow you to accompany that person to the very last step. How many of us grasp this opportunity? Instead of looking oncoming death squarely in the face, we behave as if it will never come. We lie to one another, we lie to ourselves, and instead of giving voice to the essential, instead of exchanging words of love, or gratitude, or forgiveness, instead of leaning on one another for support in the extraordinary “crossing” that is the death of someone we love, pooling all the wisdom, the humor, and the love of which we’re capable for the moment of actual encounter, we allow this final, essential, unique moment of life to be mired in silence and solitude. – Marie De Hennezel.

After the death of a loved one, I think you can find peace and healing. I wish I had told him that it is okay to feel a range of emotions, some that you may not think to be appropriate. Time will help you overcome the anger and will dull the pain of loss. But you will always remember the person you lost. After all, they were an important part of your life.

“You matter because you are you & you matter to the last moment of your life.” – Dame Cicely Saunders.

When the NHS was founded on July 5^th 1948, it was a big step into the unknown. The government wanted to provide healthcare to each and every individual and would be responsible for funding. Not everyone was optimistic. The Editor of the British Medical Journal at the time agreed with the logic of spreading the cost of the treatment of illness over the whole community but feared many dangers in a state run medical service; dogma, timidity, lack of incentive, administrative hypertrophy, stereotyped procedure and lack of intellectual freedom. At that time, Aneurin Bevin, a key figure in the formation of the NHS, wrote to all the medical professionals and consoled them saying any problems would be dealt with. You can read his message here.

Death is something which the NHS wasn’t ready to deal with in it’s infancy. It’s main aim was to cure and or manage illness. It was at that time that Dame Cicely Saunders founded St Christopher’s Hospice in 1967 aiming to promote and provide skilled and compassionate palliative care of the highest quality. Every Thursday evening, I go to St Christopher’s, training to be a volunteer. It’s been 3 weeks now and already I have learnt a lot. I thought I’d share some of those things with you.

*****

Hope and it’s relationship with honesty.

Hope is one of the few things in life that can keep us living when there is nothing else left. It is the light that is nearly always on even when every other light may have turned off. Hope can make the dead walk, it can transform the weak into warriors and can give a broken man a reason to believe in tomorrow. However hope given falsely can cause irreversible damage. “People shouldn’t give false hope when there’s none around,” said one of the other volunteers. Hope is extremely potent, a small amount, the size of a grain of sand can shine up a person’s life. But it is highly important that when we share hope with someone bereft of it, we do so honestly. There’s no point telling a person who has just lost their legs in an accident to keep the hope of walking again. Such hope, based on falsehood and nothing, is more likely to have extremely detrimental effects than do anyone any good.

Pull yourself together, and just get over it…

When passing through an illness or the grieving period after the death of a loved one, there are some people who due to a lack of experience and understanding may tell you to pull yourself together, to strengthen up and to get over it. Truth of the matter is, every day you spend bedbound or every night you spend crying the tears of sorrow, you’re telling yourself exactly that. You don’t need others doing the same. After all, sorrow and a person’s way of dealing with it is personal, as is the time it takes for them to come to terms with their loss. The journey of acceptance after a traumatic event is like a daunting climb up a mountain; full of hardships and extremely tiring. If any one needs to make that journey of acceptance quickly, it is those people who tell you to hurry up. They need to accept the fact that you need your time and them constantly pushing, directly or indirectly, will probably make it a lot harder for you.

You talk, I’ll listen.

I’ve always been a strong believer in the power of talking about one problems and having someone who will listen. In one of the training sessions, our supervisor told us to find a partner and tell them something we had really wanted to do or achieve but were unable to do so because of whatever problem. It was the listener’s job to speak as little as they could but give their full attention to the speaker. Each person got approximately five minutes to talk. In a room surrounded by people, the majority of whom, like me, had lost a loved one made me feel comfortable. Most of us had felt the pain that follows after the death of someone dear and could see it in each other’s eyes. When I began talking to a complete stranger, the words flowed by their own accord. Normally for those of you who know me personally will know that I rarely talk about such things. But at that moment in time, the feeling of unity shared as a result of loss, helped me formulate words and sentences I had never spoken before. The other person, just nodded in understanding and that was enough. The calmness and the relief it brings is something which further strengthened my belief in talking and listening. Sometimes we don’t need happy pills or pills that will stop us from dying, but instead having someone who will listen properly and at least try to understand is one of the greatest things we can ever wish for.