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