Thursday, 24 February 2011

Survivors

I have drums to beat since Juliette died - charities we've raised money for, and other work I've done with bereaved parents I won't talk about here - it might sound odd, but I needed it to help me survive.

About a year ago, the charity Anthony Nolan put me in touch with an amazing lady called Shaheena.  As a baby of six months Shaheena's niece, Alishba, was diagnosed with a condition that would have killed her without a bone marrow transplant.  None of the little girl's family members was a match, so Shaheena campaigned in their community and across the internet to recruit new donors. Very few came forward and in the end, with her condition dangerously advanced, Alishba was 90% matched with a cord blood donor in New York.  Her stem cell transplant happened, and Alishba turned four in November.  She's totally beautiful.

I often think about Katie, the friend Juliette made in hospital who was diagnosed with leukaemia three weeks after she had been.  As four-year-olds they sat next to each other in bed, little bald heads bowed together as they made "sticky" pictures with glue and sequins.  Over the months they chatted on the phone about their blood counts and chemo regimes - comic, and yet horrific.  Katie has in the past few months been signed off her annual checks; a tall teenager of thirteen, declared cured.  I don't know this from Katie's Mum - I think she found it too hard to keep in touch with me, and I honestly don't blame her.  I've been at the sharp end of the struggle too, and to stay positive is essential.  Me and my daughter are ghouls in the corner of her eye.

I'd be lying if I said I haven't ever thought, "why Juliette, and not Katie?" but where life is, you have to be glad.  I don't know why or how, but Katie survived and so has Alishba. I wanted to write an article about Shaheena and Alishba, and what more can be done to collect and store life-saving umbilical cord blood in the UK.  It's finally being printed this Saturday in the Times and somewhere, I think Juliette's cheering.

Wednesday, 23 February 2011

Sailing on


I said goodbye to some new friends today. First there was S.  He's been in therapy for a while - younger than me, good looking and successful, living with his girlfriend and the collection of rabbits, dogs and chinchillas he has been adding to since his nervous breakdown.  S is gentle and articulate, and not a person you'd imagine had been so desperately ill that they were on the point of admitting him a year ago as an inpatient.   It's been wonderful to hear him talk in our group sessions. Like so many I've met there he's evangelical about the therapy that's helped him back on his feet.  As I sit there thinking that feeling "normal" is a long way away for me, he and the other friend I said goodbye to today are better now and ready to get on with life.

R looks like Billy Idol. Edgy clothes, but with one of the warmest smiles and natures I've ever known - the sort of person who remembers your name after meeting you once.  R built up his own business, then got into drinking too much, and coke at the weekends.  He got married at 16, a horrible divorce and custody battle at 17 which he won, then met his current wife and had 3 more children.  He was an inpatient for a while, and talks frankly about what a mess he was.  He sounds like the sage of the mountain now. We've talked a lot about parenthood, and the (for me very) guilty fantasy of being utterly alone on a desert island, if only for a moment or two.  Alone, not together, you understand.  For all the intimacy of group work, when a group of people have regularly seen each other covered in snot and tears there's no chance of any of you fancying anybody else.

It is weird though. In some ways they like the other people in the group probably know me better now than Steph does.  I hugged both men like my brothers today, feeling incredibly sad that I probably won't see them again.

There must be a reason why we keep our inner selves back in normal society.  Self-preservation, or British embarrassment perhaps.  But four months into this, I do wonder about it.  Today was the end of one of our groups, before the beginning of another on a different theme, and we were asked to talk about how we felt we had changed.  I didn't know, feeling that any difference in myself was intangible.  Eventually, though I thought - I remember saying this here before, and I tried to say it again today without giving in to tears, but I didn't manage that.  What's different is that I'm accepting that I've been kneecapped by this right now, but that it doesn't wash away the last 8 years and that my children are in all probability alright.  I've realised that I can protect them from the worst of my depression now by being open with them and explaining why I'm sad, what I'm doing about it and why they don't need to be frightened.  And, God, if it should ever happen to them in the future, they'll remember that I got through it.

If I have any readers left, I'd like to say I'm sorry for the navel-gazing. But, well, perhaps we should all do a bit more.  Me, I should have allowed myself to go on grieving for my daughter rather than ramming a poker against my spine and marching on, trailing puffs of my trumped-up optimism.  I suppose, when I'm feeling kind, I did what I needed to do at the time.  Not breaking down until now has meant that our children have had a good few years of non-miserable Mummy. 

But while I'm using metaphors...when I'm better I don't want the poker back.  I'll still be strong, but I want a mast.  You can attach a sail to a mast.

Monday, 21 February 2011

High heels

I fell down some stairs on Saturday night.  I was sober - just wearing stupid, stupid new high heels and even tonight, my sprained ankle is still making me limp.

Before I went to buy the aforementioned shoes I spent a happy hour or so watching Elodie's dance class - an event that happens once a year at her school. She's so graceful.  I know I've said this before and admittedly this is partly from pride, but mainly I am totally perplexed as to how she could have been born of me. I am clumsy in flat shoes, so I'm not sure what delusion had gripped me as I handed over cold, hard cash for six inch heels.

Except that I do know. "Why shouldn't I wear heels, when other people can?" I thought with defiance.  "I too can be like a gazelle on the plain, dancing to, um,  Brown Sugar..."  Luckily there weren't too many witnesses to my graceless tumble because it really hurt, and I may have cried a little.

It's so much less painful to be yourself.  I've been thinking about this in relation to the way I've shoe-horned myself into uncomfortable roles throughout my life.  Being the strong, unbent and untouched mother and wife over the last eight years being one of those.  You don't fool people for very long, and sooner or later you're going to come a cropper.

Thursday, 17 February 2011

What a difference a day makes

Yesterday, I sat in a room full of strangers and cried.  Again. It's demanding, this therapy lark but especially when that happens. I wasn't prepared for it. I mean, I knew this group and the gentle group leader, but this lady was new to me - filling in for her colleague.  Because of that I didn't want to talk, take my symbolic clothes off and sit there naked in the circle while she and everyone looked. I sat there, arms wrapped round myself, hoping she was going to move onto someone else.  But this lady has a psychotherapy degree and wasn't having my caginess.

"So you say writing: what sort of writing do you do?"

"Well, not much right now.. but I used to do more."

"What about?"

"Well I've written a book.."

"Really?  what about?"

"Um, there's a novel as well....but the first is about my daughter, who......died." 

"That must have been a very difficult time in your life."

"Um yes, it was hard."

"What happened?"

"Well..."

...and I told her, and the room of people how it was when Juliette died - how I felt then - how I feel now - what it has meant to me and my family.  I couldn't stop.  It was the first time I had talked about Juliette in any detail since I've been in group therapy.  The more I said, the more I had to say.  Having begun I wanted everyone to see her and know her.  I couldn't look at any of them, because I knew there were a couple who were crying too.  But I couldn't stop.  It was a painful joy to be allowed to talk.

I think it was good, but I don't know.  I spilled my guts in public when part of me wants to keep her all precious and close to me - not share with people who might not understand - but then yesterday I felt them leap over the gap of understanding for my sake.  Depression is a great leveller.  I've met city men wracked with stress and anxiety, burnt out from 16 hour days, social phobic mothers of drug addicts, women with perfect lives and crumbling souls, and I've found when the layers are stripped back we're all the same - having an averagely hard time at this particular point in our lives.  I'm grateful to these people, who are strangers I'm starting to know better than a lot of my friends, for being there and making me feel not so alone.  I'm grateful to the people who make it their life's work to work with the depressed.  I'm certain I couldn't do it.

Today has been different.  Today I have mostly been loving and appreciating every atom of my husband and children, and writing about honeymoon destinations in Italy.  It's been good.

Tuesday, 15 February 2011

$15 strumpet

I'm a cheap tart.  Yes, I am.  I have prostituted what I love doing almost more than anything, for just a very few US dollars.

I've been writing over the last few weeks for an American company that supplies so-called quality content to a certain How to.. website.  To use a running metaphor, while I'm "injured" I can't train properly and this feels like the writing equivalent of running on a treadmill - largely unsatisfying, but better than nothing.  I'm very slow so I cannnot, WILL not look at my hourly rate - at $15 a pop for around 400 words, the proud little wordsmith in me weeps.  I prefer to think they're paying me for writing exercise.

Oh, and I'm your woman on a pub quiz team if there are questions on plants and animals of the Cambrian period, the causes of substance abuse on US campuses, and which hamsters make the best pets for children.

Sunday, 13 February 2011

Engines and Battles

Made in 1993
 
Doing "couple" stuff is important for us parents, we all know that.  Marriages need constant tuning, a little turning over of the engine and a good old rummage under the bonnet if necessary. Steph and I used to be so good at doing it.  To keep things running smoothly when they were born, we subjected ourselves to leaky-breasted film viewings, then pushed food around our plates as we racked our brains to remember what on earth we talked about before cracked nipples and hours of sleep per night obsessed us. 

My parents were brilliant at looking after our children, so eventually we were persuaded to escape for the odd night and apply jumpleads to the marriage motor. Even when Juliette was ill we managed a couple of weekends away. It sounds obvious, but I think reminding ourselves often that we were a couple is what kept us married.

Lately, we've been a bit rubbish even at spending an evening together.  I suppose it feels less urgent now, and that's a poor excuse - we probably need it now more than ever.  But our babies are mostly grown, and we lost our common enemy when leukaemia won.  Sometimes I can't remember what we're fighting for.  Keep on keeping our family together, I guess.  Well, for my birthday last month Steph booked us a weekend in a yurt.  Maybe we can draw up our battle plans there.

Thursday, 10 February 2011

Apples

My fingers are bleeding as I type this - it's alright, I'm used to it after fourteen years of sewing ribbons and elastic onto Elodie's ballet shoes.  But is is odd.  I was made to do ballet from a young age to cure my pigeon toes and I hated evrey minute of it - horrible black pumps and having to hold my leg at an unnatural angle so I could serve imaginary tea from it.  It was stupid and I was useless at it.  I wanted to be up a tree with a book.  But then I only go and have a daughter who is as delicate as a feather and who at age two fell into the arms of her first ballet teacher.

Before I had them, I thought my children would be little clones of me or, I suppose, their father - little knock-kneed dreamers with itchy skin and a few social inadequacies (me), or handsome, gallic, sporty types (Steph).  Raphi is, actually, sort of like his father but I don't see very much of either of us in the others.  There's that saying about the apple not falling far from the tree.  In my case, most of the apples don't seem to have fallen in the same orchard. 

It's a miracle, really, this business of procreation.  The same ingredients in, and what comes out afterwards is a totally unique person with their own personality, looks, thoughts and feelings.  Separate, and bewitchingly themselves, which pregnancy and early babyhood does not prepare you for.

Juliette didn't look like me, but I did see a bit of myself in her.  She had unconscious mannerisms which I recognised and she had my bad temper, but that's all.  She was a little girl who loved attention, but on her own terms.  Most of all, she brimmed with love - which she drew from people by loving them first.  She exploited her little life to the full, in a way that I am slow to learn.  Perhaps she was the evolved me.  I miss knowing whether she'd still be a bit like me at nearly fourteen, or less - whether she and Elodie would be as close as they were.  What would she have loved doing now?  Would she have gone on making gentle fun of Elodie's dancing, the way she did at five and Elodie was seven?  Would she be as funny, or funnier?  Would surviving a disease like leukaemia have made her serious, perhaps?  Which of her siblings would she have been closest to?  I wish I could see it, just for a moment.

Sunday, 6 February 2011

Goldfish and rats

When I was growing up my, me and my younger sisters had a tank of goldfish in the playroom.  Every so often one of the goldfish would die.  My mother would sweep in, scoop the body up and drop it out of the window.  "It's all your fault, you know," she would say. "If you kept the tank clean and looked after them properly they wouldn't die."

Last night I dreamt that a friend of mine gave birth to a baby, except when I was giving it a cuddle it turned out not to be a baby at all.  It was a rat.  A very cute and furry rat, but a rat nonetheless.  In my dream I worried that she wasn't keeping the cage were she kept it clean enough, and wondered how I could do it myself without upsetting her.  She said she was waiting for a call from her oldest daughter, away at university, but she was in denial.  That daughter was dead.

When Juliette was ill I dreamt constantly about bright, orange goldfish dying.  Helpless, vulnerable creatures drowning in air because of my neglect.

When she died, I screamed  I'm sorry  over and over again.  "It's not your fault," people said.  "You couldn't do anything."   

But I'm her mother.  I should have been able to protect her.  All I did was watch as the doctors did their work.  I didn't stop her dying.


I hate that I can't let go of this guilt, that I've started having these crazy dreams again.  What, realistically, could we have done?  What is the point anyway of agonising when it changes nothing?  Someone, please tell my subconscious to shut the f*** up.

Friday, 4 February 2011

Marathons

This?
I'm trying to decide whether to run a marathon in May.  I 've run the London marathon twice but we have a local one that happens around the little country lanes near where we live and I've never done it. 

Or this
I feel in need of a running related challenge at the moment, but I'm not sure that need is 100% healthy.  While I'm training I get fit, eat well etc., but I do become a teeny bit obsessed.  A wise friend who has also lost a child said once, "Are you running?  Or running away?"   Hmmmm.

On the plus side, I get such a buzz from being able to do it.  I was always the last to be picked for teams at school because I totally lack coordination, speed and, oh yes, skill.  Lately, with all the babies I put on some weight too, but running that kind of distance makes you feel like there's nothing you can't do.  On the other hand I've already done it twice, and can I really justify all the time and energy it takes to train? 

Steph started running a year or so before I did - he did a half marathon just after I'd had Celeste, then the London marathon a year later.  I heard him telling someone that no matter how much it hurt, all he had to do was think about the pain Juliette went through and then he couldn't give up.  She was his talisman as he ran - always with a photograph or a message somewhere on his shirt. 

I get emotional enough running those distances, so I do my best not to give myself another reason to cry.  During the last few painful miles of races I remind myself that I've already lived through the toughest challenge of my life, and nothing could be worse than that.  Running 26 miles is easy by comparison.

When I ran London in 2009 I was feeling horrible by mile 14 - I'd started getting cramps, painfully aware I still had 12 miles to cover.  I was almost in tears when a lady ran behind me and touched my arm.  She'd seen the photograph and Juliette's name on my back, and realised that she'd read my book about her on the HarperCollins authonomy website.  She started crying herself when she talked to me about what I'd written.  It was utterly surreal amongst those thousands of people that a stranger was telling me she felt as though she knew my daughter from words she'd read on the internet.  She ran on and I hung back so I could cry properly.

Running is a long and lonely meditation for me.  It's about pushing yourself to the limit, then going a bit further.  With all the therapy I've been having lately (thank you BUPA) I do wonder whether there is a sneaky pay off in long distance running.  Is there a little part of me that expects punishment because I have a physical body, when Juliette hasn't?  I really don't know.

Tuesday, 1 February 2011

Tonight

Last night I felt Juliette rolling her eyes at me as she used to, in her long-suffering way - I was a figure of fun for her, often. She seemed to be saying, 'but I had a whole lifetime, Mummy,' as though I didn't understand.  Looking through my bereaved parent books I found a quote I used to head one of the chapters in her book, and I couldn't remember where I'd got it from.   I'm going to try and hold on to this thought at the moment.

"We cannot judge a biography by its length, by the number of pages in it; we must judge it by the richness of the contents. . . Sometimes the 'unfinisheds' are among the most beautiful symphonies."

VICTOR FRANKL from Men's Search for Meaning.

Juliette was a special little girl that lit up every room she was in.  Except when she didn't feel well, she was never still.  She lived life intensely, beautifully and mischievously.  To her it was a full life.  It's only the rest of us who feel she was robbed, that we were robbed.
Juliette, Pierre and Elodie

You will do all that and you will do more

I've been feeling in need of buoying myself up, so I went looking for a passage (that I've printed out) from a book called "The Bereaved Parent" by Harriet Sarnoff Schiff.  The first time I read it I remember feeling resentful.  Who was this woman to tell me how I would feel?  How could she know the pain I was in?  But she lost a child too, and this book she wrote as a gift for other bereaved parents.  I came back to this passage because I wanted to remember how far I have come over the last eight years.  The trouble with this current mood is how easily it erodes my persepctive of what I've managed so far.  After all, Steph and I are still married, and that's no small miracle.  Our children are growing up with losing their sister as part of their childhood experience and of course it affects them, and yet they're great, rounded, wonderful children. I have Elodie's recent words to remind me that losing Juliette has made us all the people we are. We must have done something right for her to be so beautifully philosophical.

But then, sometimes I want to be that shallower, untouched person who thought bad things happened to other people.  A nasty little voice berates me for how badly I feel right now. It says, 'You're failing. You're weak. Surely you're over this by now?'  When I'm feeling stronger I can argue - if Juliette's death was as easy as that to get over, then what kind of mother am I?  Did I expect never to be depressed about it sometimes?

Anyway, just because I feel pretty damn low at the moment, doesn't mean I won't do more with the rest of my life, in her name.  Did I mention that I've run two marathons?!  Steph's run six, and together we've raised about £20,000 for various children's cancer charities.  That's quite a lot of running and money when neither of us is remotely athletic.  I've written the story of Juliette within our family and turned it into a book, and written a novel as well.  Just because I feel like a hopeless blob of a person right now, not capable of anything, doesn't mean I won't ever do anything again.  Anyway, this is a timely passage for me to revisit.


You probably never thought you could live through your child's funeral.  What could be more dreadful?  But you did.

Certainly, surviving all the grief you felt seemed impossible.  Those days and nights of crying, exhaustion, and pain were almost beyond endurance.  You were certain, at times, you would never get past that time in your life.  But you did.

There were times you felt great guilt because somehow you had not filled the role of 'parent' as society interprets the role.  You were unable to save your child and keep them alive.  As that cold, clammy feeling would come over you and your back would prickle thinking about what you could have done differently, you were sunk into such a pit of grieving that you never dreamed it would be possible to go on.   But you did.

Often, you were beset with anger and a feeling of powerlessness because events that should have been in your control simply were not.  You did not think you could overcome these feelings - especially not the hopelessness that accompanied them.   But you can.

Just when you needed your mate most, you would find he or she could help you least.  You expected comfort from someone incapable of comforting.  You argued.  Sometimes you even hated.  You never thought you would rise from the bottom of the well of sorrow.  But you can.

You thought never again could you take an interest in the world and retain friendships and attend weddings and happy occasions for other people's children.  You were certain you could never live through the trauma.  But you will.

There was no doubt in your mind that you never again could enjoy yourself.  Never want to travel.  Never give parties - or attend them.  Never have fun.  You would only be sorrowful and certainly you would never laugh.  Above all, not laugh.  But you will.


And most of all, you were sure it would be impossible for you to function as a whole human being not buffeted by the waves of sorrow that swept over you in the earlyt days of your tragedy.  But you will.


You will do all that, and you will do more.