Nothing gold can stay

For my wonderful beautiful, clever and courageous sister. Thank you for giving me permission to share this story.

Here’s how it goes.

You are living your life. Maybe you’re happy immersed in the bubble of you and your new baby. Maybe you’re weighted down with such despair you imagine your skin can barely contain it.

Then it happens: you see the blur of the car mounting the curb; you overbalance and then there is nothing but stars; trauma falls from the sky. And nothing will ever be the same again.

The first time trauma came for me and mine I was 4 months old.

The second time I was eighteen.

The third time, a couple of months ago.

One minute I was lying in bed luxuriating in a rare lie in. The next I saw the message.

In that hour and half car journey to the hospital, I prayed my sister would live. I already knew that OK would be far too big an ask.

I felt immense guilty. We’d fought viciously a month before. Don’t die. Don’t die. I chanted at each rotation of the wheels. I could not bear that she could die thinking I hated her.

When I arrived, they’d already taken her down to theatre. We were told 7 hours and two operations awaited her. In actuality it would take 18 hours of operations and be two days before we saw her again. Two days of the minutes stretching like hours. Two days of making phone calls to deliver the worse news because somebody had to do it. Two days of sitting, waiting for the hospital to call, as family and friends arrived.

Even in the midst of such utter bleakness, there were moments of grace. The surgeon and anaesthetist had operated on her neck for eleven hours without a break. They knew that tomorrow at the crack of dawn they would get up and do it all over again on her back. Both of them after scrubbing out took the time to call my parents and tell them how the operation had gone.

It takes a blink of the eye for a person to be smashed apart. But even with all the technology and expertise we have nowadays, the surgeons couldn’t put her back together again. Not as she was.

When we saw her for the first time in intensive care she was almost unrecognisable. Unconscious, swollen, more wires than human. The hiss and beep of the machines surrounding her, keeping her alive.

We stood vigil my mum, my dad, HWSNBN and I our tears splashing on her skin. As if our presence would make a difference when the damage had already been done.

There’s a room they take you into within intensive care: the relatives room. But really it should be called the shit news room. The consultant and nurse sat down opposite us and asked in a practised way what we knew. I realised then that for us this was a moment we would never forget despite how we might want to. But to him, as compassionate as he might be, this was simply a part of his day – that long ago he’d been on a training course on how to break bad news and he was putting those skills into action.

Each sentence was like a sucker punch to the solar plexus. I could barely absorb it before another blow came.

He told us that the break in her neck was very bad, the spinal cord almost completely severed and contorted.

Over the next week they would try and take her off the ventilator and force her to breathe on her own. If she was lucky she would be able to breathe on her own and talk.

If she was very lucky, she may in time regain some movement in her arms.

But she would never walk, dance or run again.

Lucky? Was all I could think. This is fucking lucky!? But of course these are the small increments that make up a life. A twist to the right and she would, after much rehab, walk out of hospital. Another angle to the left, or if my parents hadn’t been there and there would no point calling for an ambulance at all.  Lucky.

History repeats itself, with an extra cruel twist of the knife just for kicks. 34 years ago my older sister lay in intensive care in a coma. Her life forever changed after a traumatic accident: her brain was irreparably damaged but her body would be fine. Now they told us that my younger sister’s body was irreparably damaged but her brain was fine.

If my life was a book, I’d cast it aside – too unrealistic and far too bleak. Because after all that effort to rebuild here my family was again.

Another freak accident.

Another daughter in intensive care.

Another traumatised mother (this time me).

Another baby granted special permission to play among the machines.

If you’ve never had to sit with somebody you love more than anything as they come round from an operation and listen as they desperately fight with their breathing tube to mouth at you ‘I can’t move, why can’t I move’ – I envy you. God I envy you.

In those early weeks I kept thinking: I did not want this for her. I did not want this for my baby. As if I was toddler who asked chocolate pudding and instead got fucking tragedy in a pot. I almost wished I believed in the great sky father so I could march up there and demand her a refund. ‘You see, I think you got this wrong. Because she deserved the life on the beach in Honolulu and instead you’ve given her this shit sandwich of a life.’

Nothing about this was fair.

Every day I’d ring the buzzer outside intensive care and wait to be admitted. That was the worse, the not knowing how she would be. The shock of that day when I walked in and saw the space where her bed was and thought she’d died and they hadn’t told us.

Every day I’d see the other families sitting shell-shocked outside. Nobody starts their day thinking it will end in intensive care. We all know at a deep level that bad things happen unexpectedly to people like us, to people we love. But there’s a difference between knowing it in the abstract and living it. Trauma peels back the veil and you realise that nobody is safe. Not your sisters, nor your husband, not even your baby.

The shock left me reeling. After everything my family had been through was this really happening again? It felt a little bit like that instance right after you hurt yourself badly. Before the pain fully arrives and you’re still wondering did that fucking really happen? Except this period lasted weeks instead of seconds.

That’s the worst thing about trauma. You cannot prepare for it. It simply arrives unheralded from leftfield. By the time you see it coming, it’s already felled you and you’re lying gasping on the floor.

The list of things I will no longer take for granted grew. Breathing. Coughing. Being able to brush my tears away. The feel of my baby in my arms. Getting up. Walking.

Driving home from the hospital along the seafront tortured me because I knew she would give anything to get in her car and drive far, far away.

If you told her before it happened that she would spend six weeks bedridden staring at the ceiling, barely able to move her arms – she would have said I can’t. But she did. Again and again I was left amazed by her resilience and her courage in the face of unspeakable horrors.

I was also surprised that even in my moments of deepest pain there was joy too. When she was stable enough to be taken off the ventilator I felt like punching the air in relief.

I treasured those moments sitting and laughing and crying together as I fed her skittles. There was nowhere else I’d rather be.

The nurses in intensive care and on the general ward were angels. They made an impossibly shitty situation that much less shitty with their kindness.

On my first day away from the hospital after weeks of going in every day I knew there was one place I wanted to be. We went to the sea and I lay on the stones and cried and cried as Nibs crawled around me followed by HWSNBN. There was something immensely comforting about watching the waves crash too and fro on the shore. They had seen aeons of pain and joy before. Nature was indifferent.

Quickly life settled into a new normal. In the morning I sat with her. Sometimes she wanted to talk. Sometimes we cried together. Then in the afternoons I’d go home and see my baby.

Stuff which I had found hard or frustrating about motherhood was now the best antidote to the miasma of illness and pain I’d spend the day breathing in. Days after it happened as I lay unable to sleep Nibs woke crying at 1am. I went and took him into bed with us. Lying there in the darkness feeling the sweet susurration on his baby breath on my face was the first time I’d felt OK in days.

The comfort Nibs, my baby, provided was a double-edged sword. I worried incessantly about how this would affect him. Family and friends stepped in to look after him so I could spend time at hospital. But his mother had been replaced by crying husk of a person. I knew from my training and from my own experience that this could not fail to affect him.

One of things I still find hardest about dealing with trauma is the intense loneliness. I felt as if I’d been branded by a scarlet T. I didn’t feel part of this world anymore but permanently outside it. I’d stare at people wondering how they could walk around so carelessly as if they were invincible when we all so desperately fragile under our skins.

Messages poured in, some of them so lovely they made me cry. But eventually the weight of them when I was juggling hospital, Nibs, and supporting my family felt overwhelming. I felt and still awful for not being able to respond to some of them. It was just too hard.

Some people told me, out of love I know, to be brave. As if this was a test and a stiff upper lip was preferable to weeping on the floor. They didn’t yet understand that when tragedy strikes all we can do is gut it out as best we can.

Then there were the people who acted as if all this tragedy was catching. And simply disappeared. I don’t blame them. There were times when if I could have ran far away from my own life I would have.

In one fell swoop my family had become the winner of the shittest game of top trumps ever.

The only thing that helped was spending time with other people who understood. There is a brotherhood of pain. The same night she was brought in in the bed opposite a young guy with head injuries arrived. Our family knew better than most what they were feeling. Every day we’d talk them and see how he was doing. When he was transferred to rehab a couple of days before she went to Stoke Mandeville I felt bereft. I still think about him and this family often and wish him well. Even though life should have taught me the futility of wishes by now.

Trauma is a gift that keeps on giving. It’s too big to be absorbed in one go so every day a new wound opens as a realisation hits:

My baby walking for the first time. Owh

Going to my parents house and seeing where it happened. Owh

The ‘on this day’ feature on Facebook. Owh

The good thing about being through something like this before, although every experience is different, is that you have a rough map of the landscape. Ah, this is the period where I wonder how I’ll ever be able to leave the house again without worrying that the sky might fall in.

The bad thing about being through something like this before is we recognise the comforting lies we tell ourselves.

At least now the worst has happened, it won’t happen again. (It can and it will. We cannot inoculate ourselves against tragedy).

It hurts so much maybe my heart will simply stop with the pain of it. (It won’t, treacherous thing that it is.)

It’s different now to how it was in the beginning. I am able to have days sometimes even a week where I feel almost normal. But more commonly are the days and weeks where I feel so devastated I wonder that I am still standing. One of the hardest things is that she isn’t down the road anymore. I can’t pop in and spend an hour with her. I miss the reassurance of seeing her daily, more than I can say.

Somedays I wish I could just crawl into bed and never leave it again. But for Nib’s sake I keep keeping on. I go to therapy. I read stories to my baby. I kiss my husband. I hold tight to those fragments of joy that come my way like rays of sunshine through the clouds.

I am not OK. But I know I won’t always feel like this.

Sadly Option A where nothing bad ever happens to anyone I love is off the table. So I am just going to have kick the shit out of Option B. And I will, have no doubt about that.

It could always be worse. Remember that.

(But god, did it have to be this fucking bleak?)

 

The middle

The middle

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Credit: Mark Basarab

I have always loved before and after stories. Cinderella transforming into a princess. The ugly duckling becoming a swan. The hungry caterpillar emerging from it’s chrysalis.

And if asked I will talk to you honestly, happily and at length about my own before and after stories; afterwards. I’ll tell you about how I went from desperately trying to earn my place in the world to believing (most of the time) that I was enough. I will talk to you about what grief taught me about love. I will describe my struggle with infertility and how I lost three stone to access IVF and instead fell pregnant naturally.

The key word in that sentence above is afterwards. People tell me that admire my honesty in writing about the situations I have found hard. My reaction is always mixed: part proud but also part feeling like I have just pulled off a con. It’s takes courage to show somebody your scars, it another thing entirely to show somebody your wounds.

I am very good at talking about difficult experiences afterwards. When time has lent some distance and perspective and things are less raw. But sharing that brutiful (half beautiful/half brutal) bit in the middle of something I am struggling with? Ugh.

When I am in the middle of something hard, I cannot find the words to name what is happening to me.

When I am in the middle of something hard, I feel an expectation that I need to go away in private and figure my shit about before I can be in company again.

When I am in the middle of something hard I feel so bruised and skinless that an inadvertent glance could hurt me.

When I am in the middle of something hard I feel stuck. I cannot go back and unknow what I have learnt. But I have no idea how to move forward.

When I am in the middle of something hard I don’t know the story ends. I don’t know whether I will triumph or fail. I don’t know what the meaning of this experience will be until afterwards.

When I am in the middle of something hard, the last thing I want to do is talk about it.

But that’s what I ask my clients to do every day. There is so much I could say about what is happening within me right now. But I am in the middle – so I don’t. Until now that is.

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I read this quote from Glennon Doyle Melton, one of the writers who inspired me and it floored me. Yes, it is important to share our truth but what about sharing our unknowing. Why don’t we talk about the bits of our life that are still in construction. So inspired I am trying something new today. Even though thinking about hitting publish gives me a knot in my chest and that sinking sensation of being emotional naked.

Here are some things I am in the middle of:

Work

I’ve always been ambitious, it’s one of my defining characteristics. But when people ask me ‘when are you going back to work?’ I want to jam my fingers in my ears and sing loudly until they go away.

I don’t want to work again, ever. Despite the fact I love my job and staying home isn’t an option financially. I am desperately frightened that if I go back to work that ‘Push the river’ side of me, that relentless driving force will take over. And there won’t be any space for me or Nibs or anything other than pushing forward at all costs. Until I have figured out how I can work without letting it take over – I don’t want to go back. I expect my motherhood bubble will pop at some point and I may long for another identity other than mother and to exercise my intellectual muscles. But for the moment…

nope

Self-care

Having and mothering a baby has made me realise how abysmal I am at mothering myself. If I were an actual mother and child I would report me to social services for neglect. I have realised recently where this lack of self-care comes from. But I don’t know how to move forward and it makes me feel sad and stuck. Why can take care of other people, but not myself? I am starting to notice how much this is affecting my relationships with my husband, child, family and friends. And it the affect on them that is motivating me to change, not on me. That fact makes me feel even sadder. I am trying to go back to basics and ask myself daily what I need. But it is so hard and humiliating. Shouldn’t I have learnt how to take care of myself already? Is it too late to learn?

Body

I eat emotionally, always have done, and it’s becoming a problem. I eat as a reward, out of comfort, to console myself or just mindlessly. I worry that Nibs will see me and develop some of my habits. The worst thing about this, is that I successfully lost a lot of weight before getting pregnant through revolutionising my eating habits. When I was pregnant I was really careful about what I ate. But the combination of breastfeeding, tiredness, and boredom have meant I have been eating cake like it’s going out of fashion.

The feeling that keeps on popping up that I should be over this by now? I know how to eat healthily. I have done it before. I have all the tools in my toolbox but still I keep self sabotaging. Sadly I think the issue is I can moderate my approach to food when other people are at stake – but not when it’s just about me. Instead I circle around and around this issue never progressing

Marriage

He Who Shall Not Be Named (HWSNBN) and I have been in better places. Don’t get me wrong, we’re OK but we could be better. Lack of sleep and lack of time, as individuals and as a couple, has taken its toll. I find this immensely frustrating because as a couples therapist I knew that having a baby was one of the biggest stressors on a relationship and I had a chance to memorise the classic fight up close:

Stay at home parent: I love the baby so much but sometimes looking after him alone is so hard. I resent so much that your life continues almost unchanged whereas I am tethered to a tiny human being. You get to leave, to speak to other adults, to pee in private. I am never alone but I am so lonely.

Working parent: But you get to see it all: all the tiny ways he changes every day. I miss it. I miss him and you get to see him all the time and you don’t appreciate it. He’s growing so fast and I am not here. Plus work isn’t the holiday you think it is.

Repeat ad nausem

9 months ago I assured myself we wouldn’t be like that. Cue hollow laughter. We, OK being brutally honest, I have not been kind to HWSNBN recently.

It is so entwined with me not taking care of myself that I know that before I can reconnect with HWSNBN I need some time for me. To figure out who I am as a mother and individual after this immense lifechanging experience. If I am set boundaries and ask for my needs to be met; I will be a better partner to him. I am not in panic mode at the moment partly because I don’t feel like I have the headspace to panic. We are trying different things – some of which seem to be helping. We’ll see.

The future

I am very torn on if/when we should try for another baby. It took years, and years last time. And I am hyper aware I may not have years of trying left. I never want to go through that agonising desperation of trying and failing to conceive again.

But I am not ready. I am not even close to ready for signing on for the intensity of a newborn. Some days I look at Nibs and he’s so wondrous I can’t imagine not trying to give him his sibling. Some days he seems so big to me and miss him being a tiny baby in my arms with an ache in my womb. Then I have a dark day where I feel like the shittest mum alive and think I am never having any more children. 

So, this is where I am at right in the middle with all the mess and none of the glory. Watch this space.

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Lianne, two years on

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Dearest Lianne,

1. It’s been two years since you died. Two fucking years. It feels like a lifetime. It feels like a week.

2. I miss you.

3. August used to be my favourite month. My birthday! Summer! No hellhole that I will never escape from aka school! You remember 🙂 Now I dread August because I know what’s coming and the deep well of grief that I will topple into.

4. Next week I will be 32, and you will forever be frozen in amber at 30. Part of me realises you’d be amused by this. At the thought of yourself young and beautiful whereas I get older, fatter, more wrinkled.

5. I read this advice column again and again. This sentence in particular hits me like a blow: ‘It has been healing to me to accept in a very simple way that my mother’s life was 45 years long, that there was nothing beyond that. There was only my expectation that there would be—my mother at 89, my mother at 63, my mother at 46. Those things don’t exist. They never did.’

6. I haven’t yet accepted that your life was 30 and a half years long. That there never was or will be anything more. It was only my expectation, and yours, that we would sit with Debs, Ros and Greg in the nursing home and cackle about the male nurses. You will never be 70 or 50 or even 31 – and it breaks my fucking heart again.

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7.  I think about you at the oddest times when I see a grumpy cat that looks like you, a kitkat, or watching Sleepy Hollow and thinking ‘I have to tell Lianne about this’ and then remembering I can’t.

8. I collect quotes about grief like a macabre magpie. Why? Because knowing that other people ‘get it’ makes me feel less alone.

‘It turns out that Hollywood has grief and loss all wrong. The waves and spikes don’t arrive predictably in time or severity. It’s not an anniversary that brings the loss to mind, or someone else’s reminiscences, nor being in a restaurant where you once were together. It’s in the grocery aisle passing the romaine lettuce and recalling how they learned to make Caesar salad, with garlic-soaked croutons, because it was the only salad you’d agree to eat. Or when you glance at a rerun in an airport departure lounge and it’s one of the episodes that aired in the midst of a winter afternoon years earlier, an afternoon that you two had passed together. Or on the rise of a full moon, because they used to quote from The Sheltering Sky about how few you actually see in your entire life. It’s not sobbing, collapsing, moaning grief. It’s phantom-limb pain. It aches, it throbs, there’s nothing there, and yet you never want it to go away.’

9. I’m celebrating my birthday this year. The first year I celebrated, numb to what had happened waiting for the feelings to rush back in. Last year I cancelled all plans and just spent time with HWSNBN who didn’t mind when I started crying into my meal. This year I’m going out with the other people who knew you and loved you. I’m going to drink big fruity cocktails, dance to cheesy music, and if I cry, and I will, I’m going to pretend that my tears are glitter.

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10. I have been and always shall be your friend. I’m glad to have known you. Thank you for that gift my friend. Thank you for everything.

love Row xxx

Limbo

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So far, 2013 has been very tough. I only realised just how tough it had been when the pressure alleviated and I felt like I could breathe again.

In early January I found out that somebody I love most in this world was seriously ill and it could be cancer. All I could think was not again, I can’t watch somebody else I love die. The universe cannot possibly be this cruel. While knowing that the universe is exactly this capricious and cruel.

I hardly told anybody. I was worried that if I spoke the words it would make it real. Even telling my best friends was so difficult. When I plucked up the courage to tell my counsellor, after 30 minutes of babbling about nothing, she cried with me. She knew better than anybody how devastating this would be.

I am not somebody who embraces uncertainty and unknowing. I am a bit of a control freak (with weekly, monthly, yearly and five yearly plans). But living in limbo seemed easier than hearing the worst. I dreaded the test results day. I lied to myself that I was coping well until I had a crying fit about our fridge breaking and realised it was nothing to do with the fridge at all.

We got the results and it wasn’t cancer but something else. Yes, he would need treatment but he was going to be OK. That night I slept better than I had in months. When I went for a walk the next day although nothing externally had changed, everything had. I was no longer living in limbo and the relief was amazing. The storm has passed but it has left its mark. So I am going to hug the people I love very tightly, as if it might be the last time. I am going to breathe in and out until the anxiety lessens. I am going to live, fully and deeply and so should you.

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