heart on my sleeve

“Hope is such an underrated characteristic, don’t you think? Perhaps because it sounds a bit flaky. Like you’ve not prepared and you’re winging things. “Hoping for the best” is something we do when we really ought to have done a bit more leg-work. Or possibly you just wouldn’t think to use hope (well, hopeful) as a way of describing someone.

It’s certainly quite hard to define hope; it’s not quite the same as optimism. Or positivity. It has it’s two feet firmly planted on the ground. It doesn’t ignore obstacles, but allows us, even in the toughest of times to glimpse beyond them. To see a path towards a better future and feel elevated by that.

So maybe hope isn’t so flaky after all. Hope is powerful, it’s inspiring, it helps us to succeed, and I bet all of the people you look at and admire are full of it. I hope you are too.”

Emma Giacaolone

My friend Linda wrote to me recently. Where did that lost art go? She writes to me, and I love and appreciate it, and her timing and subject matter is almost always uncanny. It’s as if she has a radar for discord. I guess it takes one to know one. I was feeling particularly low on the day that her missive arrived, and seemingly sensing this she wrote “remember, although distant, I am holding hope for you”, and I read it again, and again, and tucked it into a safe place in my heart. Linda describes the notion of holding hope for someone else as coming out of a school of counselling practice, something you might choose to do when the client you are working with is so exhausted, so desperate, so overwhelmed with trauma, that they have lost all hope, rendered incapable of holding any hope for themselves. So sometimes, just occasionally, the counsellor might step in to hold that hope for you. Unsurprisingly and for the sake of your own wellbeing, it doesn’t do to have too many of these clients at any one time. 

I’ve thought a lot about the idea of holding hope for someone else, it seemed like something new. Then I remembered a time that to a large extent is buried deep, in the aftermath of my sister’s accident ten years ago, and the notion of holding hope for someone else suddenly came alive for me. Our childhood friend was the Senior Fire Officer at the time, and he said to us some years later that once they had cut her free of the wreckage she was not expected to last the short flight to the hospital. At the time this was happening I was at my desk at work, oblivious to her life dangling by a thread. Later, when I had received that terrible call and understood the gravity of the situation, she was still in A&E, so she had made it to the hospital alive, but as they prepped her that night for surgery, once again, she wasn’t expected to make it through. But she did. 

A week later in Intensive Care, just as we thought things were improving, she crashed again. Our friend Mary was with her when all hell broke loose. Mary was our GP ( I know, I know, but we had both worked with her in the NHS years before) and as she left ICU she called me to say Kathryn was being rushed back to theatre. Yet she made it. And I went back to see her, unconscious and on life support, swollen with fluid and alternately, completely out of it with sedation and then extremely agitated. She began to claw at the tubes in her throat, mouth and nose. She pulled one out, alarms went off, people scattered and I stepped back, aghast. Crisis abated, there was a discussion and then a decision that the various tubes and wires would have to be sewn onto her face. “Not her face” I said, “Please not her face”. Only her face and one arm had escaped the ravages of the accident, and I couldn’t bear for them to leave lasting scars there too. I was distraught when I left her that night. I walked back to my car, got in and turned the radio on. I sat for a moment then putting the car into gear, blinded by tears and grief, I (accidentally) drove straight into a wall. I sat there for a while, stunned, people arrived, I was checked over. Luckily it was superficial, both me and the car, and once I’d calmed down we both limped home. 

Soon, we all became institutionalised. Families do, with loved ones in ICU. You quickly get accustomed to the routines, the noises, the staff, the other families, their stories. You study charts and inspect machines and watch the staff closely, intently, for any signs of things getting worse, or getting better. A slightly furrowed brow or knowing look shot sideways at a colleague makes you cold with fear. You arrive one day to find the bed next door empty and you shudder. Some of us are not getting out alive. For a while her life hung in the balance, and in the few moments where she was lucid, I realised then that I needed to hold hope for her, although I didn’t know that was what I was doing. Working with the ICU nurses, we washed her hair, a perilous exercise involving turning the bed almost upside-down and then one of us washed whilst the other was holding a carrier bag full of water, yes – that’s how you do it. I gave her amateur facials so gently she fell asleep, working around the tubes and wires, her occasionally swatting me away. I did manicures and pedicures and hung bunting over her bed. I even did a biore nose strip (remember those?!) which was something of a surprise to the consultant on his rounds with a bunch of medical students. “Oh” he said “Oh” as he pulled back the curtain, “my wife does those ” and red-faced, he made a beeline for the next bed. Late one night as I mopped up the fluid leaking from her hands and applied hand cream, a cleaner asked me why I was doing it when she was clearly so out of it. I replied “because these are the only small things I can do, and because all of this will be important to her when she wakes up. Because she will wake up”. 

And then the day came when she woke up, and it was important. “Fetch me a mirror” she said “I want to see my hair”, and we got her ready, little by little, for her move from ICU to the Trauma Ward, which turned out to be an awful trauma. It was an incredible day, the end of the beginning, and the start of a very long road back. I held her hand that day as she was moved down the hospital corridors. She was elated and terrified. She knew everyone in ICU, what to expect when, and it felt a wrench to be leaving. As the porter wheeled her bed down the long grey illuminated corridors in the bowels of the hospital, she felt every lip in the vinyl flooring where one sheet meets the other and cried out every time. It was like the Princess and the Pea, such was her sensitivity to pain. Her arrival at the Trauma Ward was confusing, chaotic, disorganised and disorientating, she pleaded “I want to go back” and I said “there is no going back. You’ve come here to move forward. You made it” and I looked at the chaos around her and thought, god. I hope so. And so she did. And as she learned to walk again she stepped right back into her power, and is the incredible tour de force that she is today. She just needed someone to hold hope for her for a while, and she did the rest. 

Throughout the last few years, no matter how bad things have been, I have rarely been without hope, even though on some days it has been nothing more than a faint glimmer. Don’t get me wrong, there have been days when I have wept and howled and felt a pain so physical it took my breath away, and breathed and wailed and whispered “that’s it, I give up” but deep down I knew I hadn’t, not really. Like a child having a tantrum, I just needed that release of anger, energy, despair. As akin to and attractive as bile, there are days where it rises up and spills over and is as horrible to experience as no doubt it is to witness. There is no grace in desperation, there are no beautiful tears, dreamy looks into the middle distance or wistful sighs. There is rage and fury and frustration and mad streaks of mascara and eyeliner and foundation sliding clown-like off your face. Like a child might, I sometimes wonder if there’s a part of you that kind of enjoys that gratuitous outburst of emotion, perhaps even more so as an adult precisely because we’ve been taught not to. A bit like leaning into a proper Bridget Jones moment, you know the kind, pyjamas, Marlboro lights, cheap white wine and “All by myself”. We’ve all been there. 

However, there have been a handful of times when I have genuinely been all out of hope.  It’s not been the noisy, raging, angry times, not the times when I have been rushing around trying to abate, prevent or deal with a crisis. There’s no time for introspection when you’ve got your finger in the dam. During those times, adrenaline kicks in, I guess it’s fight or flight and as a mother I fight, and I swear some of those days I have felt like a woman who holds her hand up to the tsunami of shit that threatens to engulf her and says “not today, you can do one”. Those days I can be on fire. On those days, I have manoeuvred my enormous man-child into the car, wrists bleeding, and held them aloft as I drove him to A&E. On those days, I have squared up to the barrister for my sister’s assailant (for that is what I called him) and told him with chilling calm that he should hang his head in shame. On those days I have stood my ground with the giant bullying mass of testosterone of a construction director in a crowded, open plan office and suggested he has mistaken coming to work for a dick swinging contest. On those days, I could definitely do with my own theme tune. I can be blisteringly, terrifyingly competent. Wherever that strength comes from, and thank god it does, it is a scary, base, formidable place. 

On other days, I can get into my car, switch on the ignition, and burst into tears when I realise I can’t remember how to drive it. On other days, I can turn up for appointments a whole week early, and I can chat to a friend at a supermarket and return home empty handed, having left my full basket where I stood. I can look into the mirror and see nothing but a face etched with stress and opaque with fear, and feel like the world’s biggest fraud. On other days, I have been perilously close to defeat, to simply laying down and allowing a wave to gather me up and drown me. During times of relative quiet, that’s when the clouds creep in. When the enormity of the chasm of our lives has the chance to be felt in all it’s grey vastness. Ostensibly, to the casual observer, it’s when things are calmer, more stable, you could go so far as to tentatively suggest a little better. Those times of respite, of less responding, less doing, less fixing, those are the times when there is too much space to feel and to think and to analyse and frankly, to find yourself wanting. 

I went back to counselling last Autumn. It had taken me a long time to admit to myself that I was in a very dark place. I was triaged by someone and I knew, with every answer I gave, I was lighting up their “at risk register” like a Christmas tree. She was kind, methodical, concerned but not intrusive. She laboriously repeated everything I said back to me carefully, slowly, as if I was about nine, or hard of hearing. Needless to say it irritated me beyond belief, that overt reflecting back of my words, in that counselling way of saying “I have heard you ” and I thought, well at least I’m feeling irritation, which is better than feeling nothing. At the end of the assessment, she spoke quietly, gravely. Did I think I was a risk to myself? No, not really. To others? Maybe. Sometimes. I’m joking. No. (Only in my head) and again I thought, oh, black humour. I’ve still got it. Adding me to the “urgent list” she said they’d be in touch very soon. I got the call the next day. “Would you like to see the person who triaged you yesterday?” he asked. No thank you, I replied, a little too quickly. He seemed taken aback. I got the impression that didn’t happen often. 

I got Margo. Our first session was on the phone, which enabled me to give free reign to imagining her. She sounded nice. When I say nice, I mean exactly that. Homely. Sensible. Down to earth. Warm, but not familiar. She spoke slowly (but not that slowly), giving great attention to every word. And despite the fact that she didn’t do the repeating thing, thank god, I felt heard, and listened to, and understood. It is hard to describe the sheer level of distress I felt during those first few sessions. I have never in my life been able to say the words that came out during that time. Once I found a way to begin they came tumbling, rambling, mad and free, bitter and sad and raging and full of anger and love and regret. Eventually I faltered, and having worn myself out, being bored of myself, I came to a halt. Silence. A moment. Eventually she went to speak and suddenly I was off again. 

“It’s not so much that I want to die” I said “more that it would be such a relief not to have to exist any more”. I paused, shocked at having said something so enormous, at the same time as feeling infinitesimally small, and yet still somehow, taking up far too much room. “What is the point of me? I’m too tired to carry on. I just need it all to stop. I want to stop feeling. I want all of my nerves to  be cauterised. If I had the chance I would simply vanish, to spirit myself away but not to leave any imprint of myself behind, just as if I was never there. That’s what I want. Is that so bad?”. And I talked and I talked and she listened, and she heard me, and slowly, I started to feel less impossibly broken. She was good, patient, unassuming, nice Margo. She walked alongside me without judgement, and she nudged me gently, but firmly, away from the edge. 

Last week I arrived early to meet a friend for lunch. Too early really. It gave me too much time to think. As I waited my mind started to wander and I felt my heart start to race. The familiar cues took over, I felt sick, palms sweating, anxiety swelling in my chest. That terrible sense of foreboding. Something terrible is going to happen. Taking out my phone I checked my heart rate, 189 bpm. Oh god, I thought, I need to get on top of this now. He’ll be here before long, I can’t let him see me like this. And so it jumped, of course it did, to 195bpm, and I watched it, and thought no, no, no. I could hear blood rushing in my ears and all of sudden he was tapping on the window and then oh god he was in the passenger seat and saying what’s wrong? My hands were flitting and flapping in the air, like I was swatting something away, nothing, nothing I said and snapped my phone shut, just work, you know, feeling a bit under the weather and a tear slid down the side of my cheek and he said “ shall we do this another day” and I said no, no I’m fine really. About as convincing as the time I fell down an entire flight of stairs at work, laddered my tights, ripped my skirt and snapped my shoe completely in half, and limped off, mortified, saying “no really. It’s nothing”.

And then we were ordering drinks and discussing lunch which we ditched anyway as I really thought I couldn’t eat anything and he poured me some tea and looked at me and said “but how are you really” and I said “ fine, really. Completely fine” and then a silence hung in the air and I said “Actually, no, I’m not. I am damaged goods”. And then I cried and cried and the barman looked at me suspiciously as if I’d been on the Chablis and I wondered if I would ever feel not mad ever again. “You are not damaged goods” he said gently, “Or maybe we are all damaged goods. You are tired. Of course you are, anybody would be in your position. You are tired and overwhelmed and it is completely normal” and I looked him right in the eye, the first time since he arrived, and said “but you don’t understand. I feel mad, like really mad. I can’t think straight and the panic attacks keep coming and coming and I can’t stop them and I am not well. I am a high functioning nut job” and then “do I look a fright? I must look like a complete bloody fright” and on top of everything else it felt like the absolute end of the world. The shame felt unbearable but with it, the release of not pretending any more was worth it. Writing this has made me cry again. 

We drank more tea, and I found a welcome bag of mini eggs that I’d bought for little M lounging in the bottom of my handbag. I cradled those mini eggs and contemplated eating them and gradually, I calmed the fuck down. Friends. I managed a smile too, and I thought, maybe, you know, I’m not completely shit. I’m sorry, I texted later and he replied, you have nothing to apologise for. I want to help. You need to tell me. 

I met Alexandra, a talented textile designer recently, a sewist, like me, but one with a talent that goes way beyond mine, a specialist in darning and repair. She breathes new life back into things that many would discard as having had their day, used up, washed out and broken. I was delighted to meet her, and sent her my vintage fair isle glove, from which my finger appeared the other day as the old threads finally gave way. She messaged me, I have received your glove. I am looking for the perfect thread to repair it. Thank You I replied, let me know how much it will be. Oh no, she said, I would love to repair it for you, and feeling all flaky as I am at the moment, it moved me to tears. A stranger, never met IRL, offering to repair something seemingly insignificant but mattering so much. Art imitating life, or perhaps more accurately, mirroring it. I felt wrapped up in the care of a stranger.  

How hard it is to let others in. To show your vulnerability and to ask for help. To let go of your tightly held and meticulously constructed facade and to expose your heart and mind and thoughts and fears, however dark and ugly they may seem. To let the light in. How fortunate to have friends who will see through it all and say, no really. How are you? To know people, strangers even, who will care for you and carry you when you cannot put that one foot in front of the other. When you are really truly, stuck and the smallest thing that you could possibly do feels like the biggest thing anybody has ever asked of you. To advocate for someone, to take care of someone, to hold hope for someone when they are too tired to hold hope for themselves. These are truly special acts of kindness, and they give me so much hope.