Episode 5 Transcript:

Debbie Enever, Host

Mary Hartley, Guest

[00:00:00] Hello, this is the Bereaved Parents Club podcast. It’s the club none of us want to be members of, but here we are. My name is Debbie and I’m a bereaved parent. This podcast is for all of us to share and celebrate the stories of our children and offer support to each other. Each episode, we’ll explore topics that have relevance to us as we navigate the world as bereaved parents.

Whether your loss was last week, last month, last year, or even last century, you are welcome here. And whether your child was a baby, a youngster, a teenager, an adult, or even a parent themselves, you are welcome here. Please be aware that each episode will deal with themes of death and loss.[00:01:00] 

Stories and Support. The Compassionate Friends Library. 

Today I’m joined by Mary Hartley, Librarian for the Compassionate Friends. The Compassionate Friends is a UK based organisation offering support to bereaved parents. And just FYI, Mary and I sometimes shorten the name to TCF when we’re chatting.

Mary’s here to tell us about the Compassionate Friends Library and how we can find comfort and support in the stories of others, as well as find help for ourselves or for the people we know and who are experiencing child loss. So, Mary, let’s get going. Would you tell us about your story and how you became involved with the Compassionate Friends?

It all started in 2003. At that time, I was working as a nurse, mostly nights. I was separated from my husband, but we were very much together for the children. Two daughters, Karen, 25, had left home by then, and Claire, who was [00:02:00] 17, lived at home with me. Lots of the children at that time were getting glandular fever and Claire got it and she was ill.

She was ill off school for a couple of weeks at the beginning and went back and had relapses. My biggest worry really was the amount of school she was missing. She was in A level year. Thinking back now, what a stupid thing to worry about. But then in February 2004, 20 years ago, she became ill and didn’t recover, and she just became iller and iller.

And we saw a consultant on the 17th of February who thought it might be the tonsils causing the problem, and he would put her on the list for an operation. By then I was going to work at night, and I was making sure someone was staying with her. I was so worried by then. She was so ill. And on the 21st, which was a Saturday, she became jaundiced.

I called the on-call doctor. You could actually get an on-call doctor out at that time. He came to see her, sent her straight into the Medway Hospital as an emergency. Later that day, she was transferred to King’s College Hospital into intensive care. And we didn’t know what was wrong. Her [00:03:00] liver was failing. Her bloods were very, very, very abnormal. We didn’t know till post mortem what was causing it. Had three days of hell in I. T. U. and she died on the morning of the 25th of February, two o’clock in the morning. 

And one of the worst things, actually, was on the Tuesday, all the nurses were going home to make pancakes for their children. All I could think was, she lost pancakes, I’ll never make them for her again, I knew by then. So she died on the Wednesday. 

We had the funeral and all of those awful things that everybody goes through, and I was on my own in absolute hell for about five months. And I was in such a bad way, I was going to phone the Samaritans, and I knew their phone number was in the little booklet the Kings had given me.

And looking at that, underneath was The Compassionate Friends. And I had seen it before, but I thought, I don’t know if 18 is actually a child, or whether she qualifies, but I thought if I phone them, they might know someone who could help me if they can’t. And so I phoned the helpline, I was pacing up and down at the time, like a caged [00:04:00] animal, I think.

Phoned that number, half dialed it about four times, and then finally had the courage to dial the whole thing. Spoke to somebody called Jenny, who was lovely, told me that she’d been in the same boat sixteen years before, that her daughter had died. And she introduced me to a local volunteer, and crucially, to Catharine Pointer, who ran the library.

So, Catharine sent me some books, with a little note saying, ‘you’re only down the road. Drop in, have a cup of tea, choose your own books’. And I did, and she was great. She was wonderful. She was normal. She was sitting there in the middle of all these people. Postmen were popping in. Somebody was helping her. Mad cat which would kill everyone! Phone going nonstop. 

I just got that first little spark of hope. I never really looked back. I should say by then we knew that Claire had died from a very, very, very rare disease that can be caused by the Epstein Barr virus. Happens about three times a decade in this country, so we did have a diagnosis, thank goodness.[00:05:00] 

Catharine sadly died the year after I met her, she died in 2005. By then the library was in Chatham, again close to me. I started going into help and volunteer. I reviewed some books for the magazine, then it came down to head office and they needed a librarian. And somehow I found myself taking that on. So, a couple of years ago now, the books came here. They’re upstairs in Claire’s bedroom actually. And that’s, I just run it from here. And that’s, that’s my role. And. I can honestly say TCF, I think, changed, changed my life, saved my life. 

Oh, I’m so glad that you found the right support just when you needed it, Mary. And thank you, it’s been a privilege to hear you speak about Claire. And I love that the books are in her bedroom. That just seems really fitting. How many books are there in the Compassionate Friends library now? I know that some are still held at head office. 

It’s about eight or nine hundred altogether. Um, I have books really, to cover. [00:06:00] almost anything that people ask. Um, and, and it’s great to have them here because quite often I’m making a parcel of books and I get to look at them and I think, no, that one’s not right for this person now. And I can go upstairs and get another one. It works. So, there’s lots to choose from. 

Do people have to be TCF members to access the library? 

Um, the library, you don’t have to be a member of TCF to join the library. The way to do it is to get a message to me. And the best way. is to go onto the website and you can click on the link for the library and there’s a form to fill in. And people fill in their name, email address, phone number, and tell me a bit about their child. And the more they can tell me about their child, about themselves, better I can select books for them.

Because most people want me to choose. Sometimes I get requests just coming from email. They’ve heard a friend has used the library and they just send an email. If I get an email that’s not come through TCF, I’ll always then give the details to head office so they can get a [00:07:00] welcome pack as well so they can see what else.

What else is there to help them? 

Sometimes I get referrals from the volunteer helpline, Volunteers. I get quite a lot, quite a lot of requests, actually, from other countries. They must have found me on Google. So I say, ‘I’m really sorry I can’t send books to America, but I can give you a list of books that might help you, that you can get from Amazon or onto your Kindle’.

Wow, that is some reach! 

Yes, our library is unique. There is no other library like ours in the entire world. I have to say it’s down to Catharine Poynter. Catharine, um, she was a trained librarian when her daughter died. She took a few dozen books and turned it into the library it is today. She’s, she was amazing.

And I understand it’s now called the Catharine Pointer Memorial Library. 

Yeah. 

So if someone wants to borrow a book, is there a cost? 

It costs £3.49 second class to send up to two kilograms, which is plenty. I’d never go over that. And we just ask if people can, if they refund our postage when they return the books. I always say ‘if you can’ because I know some [00:08:00] people perhaps in dire straits, they can’t work because their child has died. Every penny counts. I don’t want anybody to be excluded because they think they can’t afford it. 

Are some books requested more than others? 

The ones that tend to get requested are the ones that have been reviewed in Compassion or one recent one, God is an Octopus by Ben Goldsmith. Now, that has been reviewed quite widely in newspapers, um, um, on the radio, and I’ve had several recommendations for that, and several people requesting. That sort of book will be requested because it’s in the news, it’s there. I do sometimes have a waiting list for some of them, I have to say. So it’s really what’s, what’s in the news mostly, and there is an online catalogue which some people use, not many. And they perhaps pick a book out of there and they’ll just say could I have whichever book? I’ll find it if I can and send it. And if I haven’t got it in at that time, I’ll make a note and as soon as it’s in, I’ll send it. 

You mentioned Compassion and for people listening, that’s the [00:09:00] quarterly magazine for The Compassionate Friends. Mary, how do you decide what to send people if they don’t know what they want themselves? 

I always, when I send the books out, in the first parcels, try to send something that’s a general advice that covers all aspects of losing a child. Because, you know, if you, we want everything, you want to say, Um, how do I cope with judgmental attitudes, what do I do at Christmas, things as varied as that. And some books cover all of that. So I’ve got a little selection and those go out to everybody. Everybody will have had a book called Upright with Knickers on that’s written by Gina Clay. Everyone will get that. Nearly everyone will get Aspects of Loss as well, which was written by Jill Hartley. Again, that’s an anthology of poetry, of prose. Jill says it as it is. She didn’t ever beat about the bush. She just said it as it was, and people do like that. 

My particular favourite is called Holding On To Love by Chuck [00:10:00] Collins. It’s American. Again, it gives all that advice to cover everything. There are loads of books in the library, but not many for people who’ve lost a child to a short illness, but his daughter died very much in the same sort of way as my daughter, and it was the first one I found with that same story, so I love that one. 

So there’s two new ones as well recently. 

Oh yeah, we discussed a couple before the recording. And so you mean, And Always Annalise by Claire Louise. And the other one is?

Love Untethered by Vanessa May. Love Untethered. Again, cover everything, they’ve got information about everything you could really want to know.

Those books go out the most because everybody needs those. And there’s some smaller books. There’s one called For the Love of Mike by Anne Phillips, and she wrote about her son Mike and his illness and his death and her own grief, but then she wrote also a series of bereavement columns for a local newspaper, and she’s [00:11:00] reproduced them in this book.

So that’s a great book to send out. Because people then can dip into it, so that’s very good for people in early grief as well. There’s another one by Brian Clover, Eggshells, and he wrote about his daughter Evie, who died at 13 from a brain tumour. Great book for dipping into. So, in early grief, one of those will go, probably a book of poetry.

And then I’ll look at their own individual circumstances. So if a child died by suicide, I will look for something to address that. If they died by cancer, if it was a young child, I’ll try to find something written by somebody whose child was young, so I’ll try to match up like that. 

For anyone who missed who the Eggshells author is, thank you technology, it’s Brian Clover.

What about parents who are perhaps at a different stage with their grief, do you have different recommendations for them? 

As time goes on, then you can get into books that are a bit more meaty, if you like. People want to start looking into how, why do [00:12:00] I feel like this? And their concentration gets better, and they can read a bit more. But I tend to judge it case by case by case really and try to get to know the people. And what they like and what will help them. 

Do you have books that could be helpful for friends and family of bereaved parents? I know it’s offered hard to know what to do to support us. 

We do have a few. We have um, um, How Can I Help? And If There’s Anything I Can Do. And I’ve got one brilliant one, which always makes me laugh. It’s called I Know Just How You Feel: Avoiding the cliches of grief. And it’s great because it gives the cliches. And why you shouldn’t say it, and then it gives what you might say. So just looking at that bit: ‘I know just how you feel. This statement probably causes more rage and anger in the bereaved than any other’. It goes on to say why it does, and then it said, ‘a more appropriate and honest statement would be, I cannot begin to know how you feel because I’ve never had this happen to me’. And it makes you laugh, but it’s quite good [00:13:00] as well.

And what about bereaved dads? Um, do you have any books that specifically address their needs? 

We have some books for men, but I don’t send them out very often. What I do get are emails from their wives saying, ‘can I keep the books for a little bit longer? My husband’s reading them’. And then they’ve seen books I’ve sent for his wife.

I mean, there are there, those books. I think one’s called Andy’s Mountain and, um, How Do Men Grieve, that sort of thing. Now more men are putting pen to paper. So, we have more of our books written by men. So, if I was sending a parcel to a man, I wouldn’t just send everything written by a woman. I would just try to send some of the men’s ones as well. 

Yeah, I read and enjoyed, if that’s the right word, About a Son by David Whitehouse. And I really loved Rob Delaney’s A Heart That Works. He’s very good. And also Jack and Me by Cosmo Landesman. So, they’re all dads and about their sons for people who might be interested.

But Mary, how [00:14:00] do you keep up with what’s been published? Do you read everything? 

I’ve read lots of them because I, I was a member of the library for a long, all about four, four, five years I was reading books. When they come in, no, I can’t read everything. But I read some, some that particularly interest me, and I skim everything.

I send them for review. That’s something else I do. I organize the reviews for Compassion, the book review, so I will read those when they come in, so I’ve got somebody else’s perspective. I do make sure I know what’s in a book before I send it, because you can just really damage someone if you send something really crass.

So, yeah, I’m very careful. One thing I’m really, will read is, we have a few fiction books. And some of the fiction books are just dreadful that, well, I wouldn’t allow them into the library, so I do make sure with them that they’ve been very carefully vetted. 

Is there anything recent that you’d really recommend?

I like the new one, um, God is an Octopus. 

That’s by Ben Goldsmith, yes? Can you tell us a bit about it? 

So he lost his daughter, um, Iris, to a very nasty accident. Sudden, sudden death. [00:15:00] And he found solace in connecting with nature, and with rewilding, and he’s written about that. And that, I think that’s a very, very nice book.

Really good books are coming through, whereas when I started, what, 20 years ago, all the books were written by American women, really. Very few people put pen to paper here, and men just didn’t. Now they do. 

Yes, and hooray for that. Mary, can you tell our listeners about anything else that you feel is important to know about the Compassionate Friends Library?

I think people don’t know how international it is. The library has a huge amount of information, experience, expertise. I’m contacted often by other groups, other groups who want to um, know which books to recommend to people they’re supporting, who might want to start their own library. I was actually contacted by the people that run the library’s digital library, the public libraries in England a few years ago, they have a list of the books I recommended and I have checked and they’re in my [00:16:00] local library now. Because when I went in 20 years ago, there was nothing, absolutely nothing. Now you will find something in your local library. And also internationally, I get contacted by people abroad, there was a group in America wanted to start their own little library, so I got requests there. So that’s the thing, that how international and how lucky we are to have it. 

 know there’s a TCF archive too, what is that and where is it? 

It’s actually in Kilburn at the moment, in, acid free containers to preserve the documents, the documents from the very, very first meetings of TCF, going right up to date, how they started, what their aims were, how they reached out, what they used to do, was there were only a few of them, a handful of them.

When they saw in the local newspaper somebody’s child had died, they’d just turn up on the doorstep with a bunch of flowers, that’s how they started. And at the first meeting, there were five people there, so all those archives, all their documents, all from the first gathering they ever had, from all those [00:17:00] things are there and they should be preserved. They’re important. 

Yeah, it’s really lovely to know about the origins and the development and to be able to trace it right back to the start. Well, thank you very much, Mary, for telling us all about the library and sharing your story and Claire’s story. Now, as you know, I ask all our guests to come up with something that they’re grateful for so that we can share that with the listeners. So, Mary. What are you grateful for today? 

I have, I thought about that a lot, and I’ve got three things, and I’m giving them in reverse order. The first thing is, 20 years later, I’m still here. I’m reasonably healthy. I can sit and enjoy reading a good book, watching something good on the TV, going out for lunch with friends.

The second thing, coming up in importance, is friends, family, who have kept me going, and not people necessarily in any way connected with, um, my grief or with Claire, There’s a little boy that [00:18:00] lives opposite called Alexei, he’s maybe 5, 6, and when he sees me he comes running up, smiling and waving, that just lifts my heart.

And the third thing, which isn’t trivial really, it’s the most important thing, I’d rather have been Claire’s mum for 18 years with all the grief that came with her, than not have had her in my life. She brought me joy, she brings me joy. I can look at her photos, her memories, and I have a board where she wrote, she wrote she liked little sayings, and one of them says, ‘Lead us not into temptation, show us where it is and we’ll find it’, and it makes me laugh and I think she is probably the thing that brings me most joy, most happiness, because she’s part of me and she’s here. 

Oh Mary, oh that’s great, thank you. I love that quote, and I’m also sure that listeners will resonate with a lot of what you’ve just said. And hopefully they will now be able to step into the rest of their day with a, a bit of a smile on their faces and in their hearts. Thank you so [00:19:00] much. 

Well, listeners, I hope you enjoyed this as much as I did. I might just add at this point that when I first spoke to Mary, my book, Midowed, hadn’t been published, but it has now. And I am so proud to say that a copy sits on a shelf in Claire’s bedroom and is now part of the Compassionate Friends Library. 

To find out more about the library and all the books we talked about today, and a few more, please head to the Bereaved Parents’ Club podcast webpage. Head to our socials to leave us your comments and suggestions about this and other episodes in the series, or email your feedback to hello@bereavedparentsclub.org.uk

And please do share the podcast amongst your networks so that we can reach everyone who might benefit. Thank you for listening. [00:20:00]

This episode is dedicated to Claire.