Saturday, September 27, 2014

Books about death, dying, and grief.

It's been a long while since I posted here but I felt like maybe this could be a useful post for people searching the internet for books about these subjects. Earlier this year, someone I loved died after a six month battle against terminal cancer. Grief wasn't foreign to me, nor was cancer, or even death at a younger than expected age. But as things go, this affected me more than anything in my life had before.

Not long after he was first diagnosed, I stopped being able to read anything fictional. Even my favourite authors, my favourite books. My brain was too focused on one thing to be able to get involved in a fictional tale, no matter how amazing it was or how beautiful the writing. So I started reading about death or, more specifically, how to help the dying.

In the weeks, months, or even years after a grief, you may have a compulsive desire to read about grief... Grieving people tend to read to put their minds squarely on their pain. they start ingesting books, articles, stuff from the internet, spiritual matter - anything to feed the empty space in their understanding. Anything with the word 'grief' grabs their attention. it's as though greiving persons are trying to make up for lost time, like cramming for a test they haven't studied for. [About Grief, by Ron Marasco & Brian Shuff]

My stepmum died from breast cancer six years ago, but it was never terminal. It was never you are going to die from this and there's nothing we can do. I've never had to deal with that in someone I love before and certainly not in such a short timeframe that he was given. I wanted to be there for him properly. I wanted to help as much as I could and especially wanted to be someone he could talk to about what was happening if he wanted to. But what do you say and what do you do when someone you love is dying? What do they want and need?

So I started reading.

Initially it started with the internet and reading articles about the type of cancer he had and blog posts from people with terminal cancer and what they want other people to do for them, but then I needed full books. I downloaded most of them on my Kindle, as that was easier to read on public transport and I didn't particularly want to deal with any strange looks from other people if they noticed I was reading books about dying. But I also ordered a bunch of books from Amazon that weren't available on the Kindle.

One of the things I wanted to know was how comfortable he would be talking to me about dying - was that something he would even want to do? Do people that are dying want to talk about what they're going through or do they want to avoid it? When is the right time to discuss these things and when is the right time to talk about other subjects? I wanted him to know he could talk about whatever he wanted with me, without feeling like I was asking questions he didn't want to answer. Most importantly, I wanted to be mentally prepared for those conversations, because the idea of him dying actually scared me more than anything and the last thing I wanted was to make him feel like it was too much for me to be able to discuss these things.

A dying person's world shrinks, narrowing to a few important relationships and the progress of his illness. When dying people aren't allowed to talk about what is happening to them, they become lonely, even amid loving, concerned people. [Final Gifts, by Maggie Callanan & Patricia Kelley]

This 'being unsure' didn't last long because I realised he was happy to talk about anything with me and I asked him countless questions about everything. I think he liked that I wasn't scared or uncomfortable talking about these subjects. I feel like I was able to give him someone to talk to who wasn't as close as his parents or siblings (so there was a level of him wanting to 'protect' them), but was also close enough to understand things like how heartbroken he was when he said, "I don't think I'm going to be able to come back to work," the first time I visited him in hospital.

Some of the books I found most helpful in trying to figure out how to help someone who is dying and understand what they need:
  • "Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying" by Maggie Callanan and Patricia Kelley
  • "One You Love is Dying: 12 Thoughts to Guide You on the Journey" by James E Miller
  • "Nearing the End of Life: A Guide for Relatives and Friends of the Dying" by Sue Brayne
  • "Facing Death and Finding Hope" by Christine Longaker
  • "After the Darkest Hour" by Kathleen Brehony
  • "Dying Well" by Ira Byock
Often a dying person wants to make sense of their time on earth. they want to feel their life has mattered and their influence will not be forgotten. You can play a critical role by treating their memories as important and their reflections on life as valuable. [One You Love is Dying, by James E Miller]

One of the things I am most appreciative of is that I had the chance to tell him what he meant to me, how much his work inspired me, how much his training helped me, and how incredible I thought he was in his work when his work was such an important part of his life. I loved all of our conversations about life and death, learning so much about his life before I knew him, and all of the humour and talk about books and travel in between. Plus, getting to hear stories from his childhood and things like that was something wonderful to share. Being a close part of the last six months of his life will be something I will forever be grateful for. 

It is incredible how much happiness we sometimes had together after all hope was gone. How long, how tranquilly, how nourishingly, we talked together that last night! And yet, not quite together... You can't really share someone else's weakness or fear or pain. [A Grief Observed, by C. S. Lewis]

After he died, it switched from how to help him to how to help me, because no matter how much I tried to 'prepare' myself for it, I wasn't remotely ready when it happened. So I started reading about grief. It felt strange to me to feel so lost and unsure about how to deal with these emotions when I've felt true grief before: when my stepmum died and when two young lifelong family friends had died in tragic accidents. But this was somehow more difficult for a variety of reasons, one of which was dealing with work (which is how we met as colleagues originally) when normally work is an escape and "something else" to focus on for a while when you're dealing with a loss.

No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning... At other times it feels like being mildly drunk, or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says. Or perhaps, hard to want to take it in. It is so uninteresting... I dread the moments when the house is empty. If only they would talk to one another and not to me. [A Grief Observed, C. S. Lewis]

Some of the books I found most helpful in the first few months of grief were:
  • "About Grief" by Ron Marasco and Brian Shuff
  • "How to Go on Living When Someone You Love Dies" by Therese A Rando
  • "A Grief Observed" by C. S. Lewis
  • "Healing Grief, Finding Peace: 101 Ways to Cope with the Death of Your Loved One" by Louis E LaGrand
  • "From Grief to Peace: Mourning Your Loss" by Alexander Risten
  • "Experiencing Grief" by H Norman Wright
  • "Transcending Loss: Understanding the Lifelong Impact of Grief and How to Make It Meaningful" by Ashley Davis Bush (I recommend only reading this one after the acute grief stage has passed)
Another book I read was "Splitting the Difference: A Heart-Shaped Memoir" by Tre Miller-Rodriguez after I found her blog online and had a chat with the author. I loved this book, I loved Tre's writing, and I loved reading about her frank, brutal, and beautiful experiences of grief after her husband's sudden death at the age of 40 when she was just 34. The author had previous experience with loss when her brother died at the age of 18 as well. I definitely recommend this is anyone that has lost their significant other/someone they're in love with, but as long as you're not offended by a bit of swearing and adult content.

I've since been able to read a few fiction books, although mostly relating to death and grief as well. I re-read some of my favourite books: "The Fault in Our Stars" by John Green and "Paint it Black" by Janet Fitch and "The Time Traveler's Wife" by Audrey Niffenegger and "If I Stay" by Gayle Foreman. One new fictional book I read that really stood out to me as amazing is a young adult book, "Me Since You" by Laura Wiess. I've read a few of Laura's books before and always found her writing and her stories to be incredible. One thing I particularly loved in "Me Since You" was the protagonist's description of grief:

It's the perfect storm... and it hits like a wrecking ball, coming out of nowhere and slamming into your brain. It destroys everything. Your emotions are in shambles: one minute you're crying, the next you're laughing, the next you can barely lift your head for the agony. Life narrows: you don't care about stuff that used to matter and you overreact to the stuff that matters now. You need to be held, but you want to be left alone. Your short-term memory is shot. Every step is like slogging through a mud pit. Exhaustion hits at random and all you can do is sleep. You second-guess yourself constantly. You can't meet anyone's gaze for fear you'll see blame there, or suspicion, or judgment. You feel small, weak, guilty. You think weird thoughts, do strange things. Every nerve in your body is raw, but your brain is a foggy, unreliable mess. You can't see from crying and food has no taste, but all of a sudden you can smell a dirty sock three rooms away. Your moods are up, down, down, up, like a crazed, speeding, out-of-control rollercoaster you can't get off of, no matter how long or how awful the ride. And that's just the first three months.

Grief is such an isolating, lonely thing and I really found books (as well as reading blogs and becoming friends with the bloggers) have helped me immensely in my journey through it this last year or so. Yet another reason I am grateful to books and so glad I love them as much as I do.

The act of living is different all through. Her absence is like the sky, spread over everything.

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