Closing Pandora's Box

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

_________________________________

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

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Some of you may remember I posted a collection of reflections back in September in the name of “For Your Story” which dealt with my reaction to the passing away of Charley. A very lovely friend of mine, Yara, drew a front cover for it (above), signifying the single path which in its continuation leads to life and ultimately to death. Is death not a part of life, just as the two sides of the tree are still part of the same tree? It is an amazing drawing and I would like to express my heartfelt thanks to her for sparing some of her time to make this drawing.

I’d also like to thank Hijabi Hippie Hypo for awarding me the versatile blogger award. There were some conditions to go along with the award, and as I have already made it once, you can view it here. It is also her blog’s 1st anniversary today and so a very very happy birthday HHH! You all should pay her a visit (click here).

In other news, I was requested by a reader who wished to remain anonymous, that I should start a medical blog. What do you guys think? If you’re going to give me thumbs up is there anything in particular you’d like me to start with?

Yesterday I heard an amazingly thought provoking Khutbah (sermon) on Jumu’ah which I shall share with you soon. Also, I’ve been working on the ‘closet’ post which is self reflective and consists of 2 parts that will be posted in the near future (next week-ish).

That’ all for today because the football is about to start, so I take my leave, and wish you all a very happy weekend. OMG! I’ve missed the first half. NOOOOO

:)

_________________________________

Title: Reach – S Club 7
Drawing Cover for For your story by Yara.

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/

Many hundreds of people walk through our lives each day but only those who love us, and whom we love, and those that care for us, and those for whom we care leave their footprints engraved on our heart.

What does it feel like many people ask. Sometimes it feels so very much like fear. That same fluttering in the stomach I get while standing at the top of a very tall structure and looking down below, the same agitation and that same restlessness. Sometimes there is that dry mouth because the swallowing wont stop. Sometimes it makes me feel so detached and so alone, as if there is an invisible barrier between me and the world. The words people speak, the things they say just doesn’t seem to register. Or maybe it’s just hard to want to understand, it can be so uninteresting. I fear the moments when I am alone.

Some days a little voice inside me shouts out from the depths and tries to assure me that it really isn’t that much of a big deal. After all, people come and go, so what is different about death? I was happy before I met Charley. It happens to everyone and people move on. As I contemplate, I am left ashamed listening to what my mind says. On the other hand it does speak sense. But 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. It is then you are left sitting alone on that park bench with nothing but darkness and cold surrounding you. Just so alone.

This is the park bench Charley and I used to sit on. I took this picture of the snow covered park while on one of my midnight walks – 2^nd Dec 2010, 01.55am.

*****

Over the years, many people have tried to explain ‘grief’ to me using all sorts of analogies. While at the hospice training one day, we were discussing this matter and the coordinator explained a few different models of grief. I’ll explain one of them here:

This first circle (left) represents you, me, him, her and everyone in their normal ‘grief-free’ state. The greatest worry or problem we have to deal with is what pair of jeans to wear in the morning or what sandwich to buy at lunch. Life is okay with no major drama but being humans we still complain.

The flaming red and orange in the circle on the right is representative of grief. Grief felt after the ending of a long term relationship or the bereavement following the death of someone very dear. It is totally overwhelming and takes over us (the whole circle of ‘us’ is full of it).

Most people assume that over time the grief due to a bereavement or loss for example, will lessen and there may even come a stage when it completely disappears. In this ‘assumption’ we don’t really change as a person, it’s the grief which changes. After all, time is a great healer is it not?

In reality however, the grief doesn’t change. It is always there. We just grow around it, learning and developing ways to cope so that it hurts less and less each day. This is how I like to think of it. The human brain is an amazing thing. The way it can store, recall, sort and process information is just mind boggling. I think grief is like constantly playing music; it’s always there in the background but your mind learns to block it out. If you’ve ever sat in a classroom with a road just outside, you’ll initially hear the cars going past. But as the lesson progresses and you get stuck into your maths or English or whatever, you no longer hear the cars. You’ll only notice them when you look out the window and concentrate on them. Grief is the same. After some time, which may be a few hours, a few days, weeks, months or even years it becomes like music playing gently in the background.

*****

Tomorrow (18^th Dec 2010) would have been her 21^st birthday. On her 18^th, standing in the freezing cold at the edge of the river Thames, we made so many plans and so many promises for the years to come. I remember holding a warm cup of coffee in my shaking hand and telling her, ‘Whatever you plan for your next big one, just make sure it’s somewhere warm. I’m giving you three years to think of something.’ But there wasn’t to be a 21^st, there are just memories.

Though we all take trips to the city of memories, we have no choice but to come back because unfortunately they are only trips. In our remembrance of the dead, we can not forget the living. Today is the birthday of a lovely friend of mine; Rosaline Lifeo. May the Almighty grant you a long and healthy life. May it be like being on a ferris wheel, dominated with that indescribable feeling of limitless happiness and awe when you are the top. But when you are at a low may you have the strength, the faith and the belief that it will only be temporary.

Come to think of it, life isn’t that much different from a ferris wheel. The only difference being we buy the ticket for one and are given the ticket for the other. Otherwise, both the rides have their ups and down and regardless of what happens, they both go on.

*****

 

They make it look so easy, connecting with another human being. It’s like no-one told them that’s the hardest thing in the world. I’m left not with what she took from me but with what with she brought. Eyes that finally saw me for what I am. And this certainty that nothing, nothing is set in stone, not even darkness. – Dexter, Season 5, Episode 12.

We meet new people each and every day wherever we are. Some of them we stop to talk to. Others we go out of our way and make the effort to talk to. Connections are laid and a relationship is made. The hardest thing I think is maintaining those connections and keeping them living. In my remembrance of the dead I must not overlook those whose footprints are engraved so deeply on my heart that time shall never be able to erase them. In my remembrance of the dead I must not hurt those who give me a reason to live. In my remembrance of the dead I must never forget those who teach me how to keep going. I will not forget them. <3

(I hope you understand this person with no name, this one is for you and all those who I know are grieving or have grieved. I will not forget you)

I like writing. It's my pressure valve which I can use to relieve the excessive build-up of emotions and feelings that sometimes threaten to blow me up. It's a way I can put down onto paper things that are eating me up on the inside so that I can face them and deal with them.
There is one such piece of writing, which when I showed to a few friends of mine they suggested I should share it with others for reasons you'll find out when you read it for yourself. I started writing this back in February, a few days after my birthday and it's only just recently that I have completed it. Many of you have been waiting to read this 'story' for a long time and at first I had decided to put it into one pdf file which could be easily downloaded. But seeing as how time consuming that is, I shall now upload each part as I finish typing it. This is where it begins...