Critical Care

It’s a sunny mid-July evening and my partner is breaking in to my mother’s house through her open bedroom window. As he swings himself up and eases lengthways through the narrow gap like a man posting himself through an oversized letterbox, not for the first time I am profoundly grateful for the differences between his physique and mine. He drops out of sight behind the net curtains and I hear the front door unlock and open at the side of the house. I don’t want to, but I go inside.

Her clothes are where she undressed for the night before, neatly laid on the back of a living room chair. She is still in bed, on her side I think. She has been laid there all day, not answering my calls, unable to move: a fish out of water. She just about responds to our entreaties with the vaguest of noises but her mouth is open and dry.

I call an ambulance. They ask what’s wrong and I try to explain. I say maybe she has had a stroke? The operator asks why I think so and I haven’t the faintest idea, because it is really only my brain panicking and grasping at straws as to why she’s lying there like that. They tell me it’s on its way. We wait.

It has been an otherwise normal day at work in central Birmingham. She hasn’t been well for over a week so I try to call before heading to London for one of my quarterly overnighters: hotel stay, breakfast meeting in the morning for the committee I look after. When I call from home and she still doesn’t answer I’m puzzled. When I call on my mobile as Phil is driving me to Sandwell & Dudley station and she still doesn’t answer, I am properly worried. She’s unwell, she’s on her own, I know she can’t be somewhere else. We don’t go to the station. We go straight to the house, without our keys of course.

The ambulance guys gown her up for modesty, my poor immobile mom in nothing but her pants, and I go with her in the back while Phil follows. SatNav takes them erroneously up a cul-de-sac before we even leave the village, but we make it to A&E in Stafford eventually. There are cubicles and curtains and waiting and inspections. A blur of shapes and faces. The long and short of it is that she ends up in Critical Care and so do I, sleeping (as far as was ever going to be possible) in their little overnight room. The existence of these rooms is something you don’t find out about, I guess, unless you work there or someone you love looks distinctly like they might be about to die.

The next few days don’t bring a great deal of clarity, for the doctors apparently or for me. They seem to decide she did not have the suspected heart attack (definitely not a stroke), but are much less clear on what is actually going on. We have conversations involving a lot of euphemistic medical jargon and my shock in the face of my mother apparently being at death’s door means I lack the mental capacity to interrogate, retain or understand exactly what they’re telling me.

I don’t know what I’m doing.

She is in the bay at the end of the corridor, the one where the light is grey and flat, the one where I imagine they put the most critical of Critical Care patients. Gradually she is conscious more often, though sometimes half-dreaming. One afternoon she asks “is this Debenhams?” and I say no, mom, you’re in hospital. “Oh, I thought this was Debenhams!” She chuckles, quietly.

She gets very breathless, so there is oxygen. One afternoon I am surprised she has asked for jelly and ice cream. She struggles to coordinate eating it with keeping her oxygen going, so I feed it to her slowly in between breaths. She looks at me and says “you should have been a nurse.”

Three days before she ends up in hospital it’s my 30th birthday. In the weeks before I hear her and Phil conspiring over something on a visit and it turns out this was him asking her permission: my present is an engagement ring. It is beautiful, exactly what I would have chosen for myself, but I am sad we can’t celebrate together. Mom has been wiped out for a week or so – tired, breathless and struggling to get about.

She hasn’t really felt the same in herself since they took her off Methotrexate for her rheumatoid arthritis, plus we lost Dad only last March, then this. The GP has given her Furosemide but it doesn’t seem to be making much difference. She is exhausted. We have a meal booked, but she tells us to go without her, because she can’t really face it. So we do, and it’s a lovely evening, but it isn’t the same.

They have moved her to the other bay now, where the sun comes through and you can hear the goldfinches chittering in the trees outside. We have a new routine where I go home at night to sleep, call first thing in the morning to see how she is and then Sue, my not-yet-mother-in-law, drives me to the hospital every day and stays with me, crafting or reading or watching TV in the family room.

Mom is a little more settled, brighter in herself, but there is infection to contend with because she is bed-bound, and her catheter makes her wince in discomfort. She tells off the beeping machinery beside her, tuts at the monitoring clip on her finger that wobbles about. We don’t have Big Conversations, because in my mind although things are very much not OK it seems more hopeful that she will get better, so I just sit with her and we talk about my driving lessons and nothing very much, then I let her sleep again for a while.

And repeat, and repeat, with the smell of one specific brand of hand sanitising gel that I can never unknow, now, underpinning all of it. There is a nurse who is also named Margaret, but she is a Maggie. Mom says she never liked being called that. Once she flaps her arm at me, beckoning, and when I look confused she says “I want to hold your hand” so we do, and I feel the smoothness of her swollen, arthritic fingers as she strokes my arm.

The day we lose Dad, she drives us home from the hospital and we sit together, dazed, in between the phone calls I tell her I will make to let people know he has died. Phil leaves work early to come over and somehow we manage an evening meal, but when I say that we’ll stay with her overnight she refuses, insisting that we go home. “I’ve got to be on my own sometime,” she says.

I call as usual first thing on Sunday morning when I get up, and ask the nurse how she’s doing and if she had a good night. This time, though, she hasn’t, and things are tricky. They’ve had a chat with her, talked about putting her on a ventilator and she’s agreed to that, so I say I’ll be there as soon as I can but they tell me she’ll be ventilated by then. We grit our teeth and Phil drives us there, neither of us quite sure what we are heading into. It is two weeks since my birthday and sixteen months since Dad died.

She is back in the grey bay when we arrive. There is another long conversation with medics, full of talk of plasma and this or that thing that could theoretically be done, but. The kind of conversation in which people who know that they are out of realistic options attempt to tell you, a confused and frantically worried fully-grown child, just enough for you to magically intuit that this is what they mean, without actually wanting to spell it out for you.

Instead of yelling JUST TELL ME IF SHE IS GOING TO DIE I try, through the thickening fog that is my brain, to ask them: are you saying you want me to agree that there is nothing more you can do? And there is shuffling and more jargon and concerned looks, and I know that there is no more to be said. All there is now is to prepare ourselves to wait.

Later in the afternoon I ask if I can go to sit with her for a while. I hold her hand as she sleeps with alien tubing snaking into her mouth, and in spite of having no idea how much of her is even present any more, I talk. I tell her that I love her, that of course I don’t want her to go, but if she has had enough I understand and I want her to know that it’s alright because we will be OK. My throat cracks as I speak but I don’t cry. I tell her that I’ll be just down the corridor and I’ll come back when it’s time, that I’ll be with her. I don’t cry.

She slips away so slowly, hour by hour. We take it in turns trying to doze, popping down every so often, coming back. Finally it is around 3am when a nurse comes to get me and tells me it’s time. We sit with her together, holding her hand, telling her we love her. The last ripples of her become fainter and fainter until the water is calm, undisturbed now, and the lines on the monitor are too. It is a peaceful, profound experience for all that it is one I never wanted. She is so still, and we sit with her a little while longer as the nurse, quiet and kind, explains what happens next.

Then the strangest thing of all: to leave behind someone that you were a part of, who you were responsible for, alone in that grey room in the care of other people for the last time. When we get into the car the first light is dawning and we drive silently towards home in the hazy rose-pink glow of a new morning. I don’t cry. Not yet.

On the things that keep us down

[CW: discussion of violence against women]

It has been a very long week.

I don’t know if the world really gives a toss for the thoughts of one more furious woman, but where else am I to set them down? They are eating me from the inside and I would like to stop feeling consumed.

This weekend my body did what it seems, over the last couple of years, to have learned to do when it needs to tell me that I have had enough. It usually starts with a deep lower back/hip ache to one side, gnawing, impossible to stretch away – though I tried, stood in the vet’s car park, waiting for the cats to have their annual jabs inside. This is almost what passes for a trip out, now.

Then, back home, the cold and the shaking. Uncontrollable, full-body shakes, jaw slamming itself shut every so often (thankfully my tongue is intact, but it’s a close call). Rapid breathing, rapid heartbeat probably, but it is hard to tell because everything is moving, constant, and I have very little control over it. I try to do calming breaths as best I can, but it is a struggle.

This part lasts for up to an hour. My husband sits with me, covers me with blankets, tells me I’m doing OK. This is the part I’ve almost got used to now, after the fifth time in two years: I don’t feel panicked or confused, I just wait for it to stop.

Then, when it stops, the rough stuff starts. The exhaustion. Disturbed sleep, oscillating between heavy sweats and cold because my body has temporarily forgotten how to regulate its temperature properly. Muscle and joint aches everywhere. Deep, deep exhaustion. Staying awake is excruciating because my head, face and jaw hurt and painkillers only graze it, really. Sleeping to avoid it is hard because all of the above. This time it was about two days of that before I stopped wanting to rip my own head off. Last time it wiped me for nearly a week.

I think (and this is not a medical opinion – I had a run of tests in 2019 after three of these in shortish succession, and everything was A-OK, so no answers there) that what is happening is that I get overwhelmed, and for some reason my body throws out a ridiculous spike of adrenaline on top of what’s already buzzing around, and it’s too much to deal with physically so basically it short-circuits me for a while. Error. Malfunction. Alert. Alert.

And the bit that’s interesting to me is: how the hell do I never see this coming?

There are signs, of course, but only when I look backwards. Each time it’s happened I can point to a cluster of different things going on at the time which individually, I felt that I was coping OK with: maybe finding things hard going, but in a “well, sometimes things are just tough for a while, it’ll be OK” sort of a way. And yet altogether, somehow, unnoticed by me, those things coalesced into Too Much, tipped the scale so subtly and adroitly that I didn’t feel the change happening.

What was it this time?

If I am honest, I can no longer deal well with lockdown. It isn’t just the increasingly pressing need for other people – real, physical other people apart from the one I live with who has to put up with my nonsense every single day. It is also the loss of work; the future uncertainty about what work looks like for me now, and the difficulty of engaging with that; the feeling of being hemmed in, becalmed, desperate to see somewhere, anywhere else; the feeling that I should be quietly grateful for my privilege in being able to sit the whole thing out; the deep resentment that festers with obeying rules that, however necessary, are created by people who will happily trash any rule they like in order to line their friends’ pockets while people like my friends put themselves at risk and get a clap instead of proper remuneration.

That’s definitely part of it.

And then there was the news last week. Sarah Everard’s tragic and shocking murder, when simply walking home minding her own business, is the very worst kind of reminder that even without a lockdown to keep us contained, male violence and the apparent lack of will to seriously address it remains a dragging chain around the ankle of women and girls – and plenty of men too, even those who think it doesn’t affect them because they’re neither a victim nor a rapist so what are you implying?

I have been so angry. Filled with rage at the endless stories shared by women. Neverending lists of aggressions, the small to the utterly heinous, always the same shit, stinking heaps of it piled onto us over the years but how dare we wrinkle our noses? Just get on with it, why are you bitching about being covered in shit? I know other women who are quite happy being covered in shit, you’re just being difficult.

I’ve thought, unusually, about all the examples in my life. The ones I can remember at least, because we file a lot of the small ones away, knowing there is no point doing anything else. Women’s pain is not interesting enough. Take a look at all the International Women’s Day rhetoric if you need a reminder. We want our women Strong! Inspiring! Brave! None of the messy stuff, thanks, that takes effort to fix and we’ve better things to do. I’ve thought about how absolutely ludicrous it is that I should have to consider myself lucky that I’ve never been seriously sexually assaulted or raped.

Then there are the female celebrities obediently opining that we shouldn’t make men sad by saying they’re all terrible (we’re not, that’s a crass misrepresentation of the point), because it might harm their mental health. But it’s apparently OK for women’s mental health to suffer from lifetimes of socially-normalised misogyny. Cool, cool. Glad we cleared that up.

Perhaps it isn’t such a surprise that I never see it coming when the adrenaline takes over. We learn quickly as women. What many men think of us. How to be disarming to avoid a confrontation in which we know we’ll come off worse. How to keep our mouths shut. How to cope. Get on with it. Just cope. Cope. Cope.

And just now I’ve had enough of all that.

I don’t have answers, not even close. I have a pretty privileged existence as a white woman, I know that, and yet even I can ill afford the anger and frustration, because it makes me physically unwell even when I feel mentally OK.

Imagine what all this is doing to other women. Women you know. Talk to them. Listen. Understand. Make it better.

On coping and nothingness

Morning sky, 19th December 2020

I cried this morning.

In spite of the very best efforts of this ludicrous year, I haven’t cried for months. Can’t remember the last time. But there it was, unbidden and uncontrollable, the hot prickle of something trying to make its way out – and as sometimes happens, that something turns out in part to be words.

So, can we talk about coping?

This year has been, let’s not be delicate about it, an absolute bitch for a lot of people. For me personally, three-quarters of my regular work (close contact complementary therapies) was wiped out overnight. I don’t know if I’ll ever return to the hospice role that I loved dearly and was incredibly lucky to have at all. People I knew and saw regularly through my other, voluntary, hospice role have died. People I was deeply fond of, who were part of the fabric of what used to be my routine. Friends have been ill with Covid, some with long-lasting effects. Others have suffered their own losses. Both my husband and I have experienced wild oscillations in our mental health. We’ve lost former colleagues, our last remaining next-door neighbour and three extended family members – which has also meant seeing relatives lose both their parents in the space of a year. That’s a t-shirt I earned a long time ago, but watching it happen to other people can still push a sharp nail into those tender spots.

Everyone’s dealing with their own stuff, of course. None of what I’ve just told you is particularly unique. Earlier in the year, it was easier to see it all as a temporary thing and to meet it with something resembling optimism. I took writing courses, enjoyed creating and met some fantastic people in the process. Knowing it wouldn’t last forever, I wanted to use the unexpected time out in ways that felt worthwhile. I still do, but now we are further into what is clearly a long haul. The dark half of the year with its thin, meagrely rationed sunlight, is upon us as I write this only a couple of days before the Winter Solstice.

And what I am currently doing is nothing. Which would be absolutely fine, if it were not for other people.

I have known for a long time that doing nothing (or very very little, to be exact – thankfully we’re nowhere near approaching the Abandonment Of All Self Care / Not Leaving The House stage) is a coping mechanism for me. When things become overwhelming, when the rug is pulled from under you in such an entirely unforeseeable way as this year has done, when the future is no longer anything like what you thought it would be, when you are grieving for people and for the absence of everything you thought your life was, what I need to do is to stop. To allow myself to put aside responsibilities and to just live a day at a time.

Here’s the thing: I shouldn’t be, but I’m ashamed of that. Embarrassed. For lots of reasons. Look around you. The Covid circus continues, round and round it goes, because stopping is Not Allowed. Many people have no choice, of course, and although things are a little tight for us right now, being able to simply wait things out is a privilege and don’t I know it. So many people cope by throwing themselves into things, by making themselves busy, I know that too. There are a host of shoulds taunting me, all the ways my guilt tells me I ought to be filling my blank days up with productive things, because what are we if we aren’t productive and how will anyone else recognise our worth if not by the things we have done and the hours we have filled? Laziness. Selfishness. Aimlessness. I’m afraid of people thinking those things of me. It shouldn’t matter what they think, of course, but it does.

And I’m embarrassed because I don’t want help. I don’t want it because ultimately I don’t need it. I know myself well enough by now to know that if I sit with this for as long as it takes – however long that is, I know it is temporary – somewhere in the back of my brain, unconsciously, I am working things out. Eventually, the clarity and the motivation will return and I will pick things up, inching back towards some kind of structure and meaning. I’m not entirely OK now, but I will be in good time. But I am awkward and stubborn and heaven knows I always have been, so please, please don’t offer me helpful suggestions or well-meaning ideas about making lists or writing things down or things I could be doing, because however much I love you, all I will hear is please deal with things in a way that makes more sense to me. And I can’t do that, I’m really sorry, but I can’t.

I have to do it my way, and my way is bloody-minded and socially unacceptable and honestly, it’s excruciating to say that out loud but there it is. That’s how I cope. Quiet. Nothing. Lots of it. And if I need anything to get me through, it is for people to be OK enough with that to just let me get on with it.

I promise I will do the same for you.