Unstuck in the Middle With You
A blog inspired by the things we’ve shared in the middle of all the shite
By Brigid Russell & Belinda Weir
Brigid & Belinda:
This is our story. Like all stories there are heroes and villains, choices and challenges, triumphs and disasters. But it is not at all clear to us, as it is in most stories, that there is a beginning, a middle, and an end. We feel much of the time that we are living in the middle — messy, uncertain, a liminal space which is neither one thing nor another.
This messy space in the middle is not where we chose to be. We are both capable professional women, involved in all sorts of interesting developmental stuff we love, happy in our relationships. We were both aware that life could be difficult and chaotic, but on the whole things were going well. And then they were not.
We know this is a long read, but in sharing something of our stories we hope there may be moments that resonate for people who are similarly in the messy middle, or who are friends and companions to those who find themselves living there.
Brigid: Living in the messy middle of grief can be bloody tough. Lots of it is necessarily lived alone, or it feels like that anyway. And then there are some people who just get it. Who listen, and say it as it is. Who have lifted me exactly when I needed it.
Life is just shite sometimes. In fact sometimes shite is the only word that will do. Laughter is good, and it’s more than OK to say the clumsy thing. Better to say ‘I don’t know what to say about how awful your chemo treatment sounds today, but I’m really sorry it’s so shite’. Better to ask about the person who has died… to bring them into the room because they’re already there. I love it, Belinda, when you elaborate on something I’ve shared about Jim, almost as if you knew him. I find it so odd that you didn’t know each other — I really feel as if you did!
Belinda: I do feel as if I knew Jim. Through you, you make him real, and that’s important to me, being real. I really want to tell people the truth when they ask how I am. I’m scared, I woke up at 4am and planned my funeral; my bones ache, I have a weird pain in my chest, I am so tired I can barely form words and then the sun rose and I wrote a poem and drank my coffee and yes, I’m fine. Thank you for asking.
Brigid: We can be ourselves — we’re not being heroic or brave. We’re just being how it is, letting each other be how it is, without any sugar-coating. Crying is good, a cathartic thing, and it doesn’t mean we should apologise, or that we’re going to collapse in a heap. It might actually be a huge relief, and it might merge into laughter in a moment.
Belinda: One of the things that really helped me was Spaces for Listening early on. You started the first group I was in by saying ‘my husband died, I’m feeling very sad today’ and it just blew me away. That structure, that simple space, created a container for saying the real, hard things, without the need to fix or be fixed. That was so liberating when I had cancer to deal with. I wanted to be irreverent, rude, angry. I was all of those things but people found it shocking. I went round saying ‘fuck’ quite a lot and you didn’t flinch at all. You joined me.
Brigid: Yes — I can remember when I first read your message about your cancer diagnosis. I was in shock — and said to Charlie “I don’t know what to say to Belinda”. And he replied — “Brigid, you of all people know exactly what to say to Belinda, how to be…”. So then I felt able to say “yes, it is shite”. You and I could both be in the shite — not wallowing, just being in it together. Not afraid of my grief or your anger. And we could laugh.
Belinda: It means not being fearful of getting it wrong. Blundering. You talked about it being OK to be clumsy… that’s exactly right. How we deal with the shite is how we deal with it — I think that’s what I’ve learned from our conversations. If we can’t say yes to the mess in our personal grief and anger and pain, how can we say it anywhere else — to the political sphere, the climate emergency, whatever? We have to bring our whole selves to this. Nothing less will do.
I picture us sitting on the top of a hill, drinking tea from a thermos, looking out at the land and being quiet together, and then laughing because it’s all so fucking ridiculous isn’t it.
Brigid: It’s about just being there, in it. Alone, or with others. Whatever that means, whatever it takes. Even, especially, if that is just to say…
‘No, I can’t talk about it today, I’m knackered.’
‘I’m feeling really sad and shite today, and I don’t really know why.’
‘I’m scared that this will never end. I don’t really know who I am anymore.’
‘I wish I could just run away and hide sometimes — but really I know I can’t.’
‘Don’t tell me what to do, don’t give me advice, and don’t whatever you do hug me for too long.’
Belinda: Yes, definitely that last one! What a relief that we couldn’t hug for a while.
Brigid: Yes, living alone and virtually at the beginning of grief had that small bonus… No hugs! So tell me how it was for you…
Belinda’s Story:
Diagnosis
The news when it comes
shocks like ice water, but is
not unexpected.
I go to the oncology ward for chemotherapy. It’s raining. I feel myself stiffen, force myself to breathe deeply as I walk along the low-ceilinged corridor, wet boots squeaking on the linoleum. Lifts up, stairs down. That was how I arrived on my first visit, even though I know now that I can manage the four flights of stairs. Routines somehow make this intrusive and painful experience less frightening.
The first time I came to the ward a bald woman was ringing the bell. I physically recoiled at the unwelcome future vision. She was laughing with the nurses, and they were clapping, in a macabre reversal of the Thursday evening ritual we had adopted during lockdown. I vowed then that I would not be the person who was so familiar with this place that she thought the nurses were her friends, had a favourite seat, didn’t hide away her naked head like the atrocity it clearly was.
Today I am greeted warmly by Wendy at the reception desk. Leanne, who does my obs (see how fluent I am in clinicalese), is from the Philippines, misses her mum, has a boyfriend in Glasgow where she first trained, sings Christmas carols in October. I am weighed, my blood pressure is taken, a thermometer is prodded into my ear, my pulse is measured. I have become nothing more than a page of calibrations. The nurse notes that I have lost 2kg — “Hurray!”. “No, we don’t celebrate that here”.
I have brought a book and a magazine, and for the first hour they nestle undisturbed in my rucksack. I am answering emails and writing a proposal for a new programme. I want people to see that I am working, still economically active, still a player. Not like Derek, who dozes in his chair, the machine that is drip-feeding him drugs beeping occasionally when his lolling head disturbs the catheter.
Chemo #2
Here we are again,
sun shining, biscuits and tea,
IV chirruping.
(I was cheerful that day because Dimitri, a healthcare assistant who says little but communicates his caring in deeds, had just brought me custard creams)
Leanne comes to insert the cannula. My husband taught me to dig a fingernail into my thumb on the other hand as the needle is inserted. Pain to distract from pain. Self-inflicted pain is manageable. Even so it hurts as the needle goes into the vein on the back of my hand. Always the right hand. Leanne is skilful, quick, talks as she carries out the procedure, tells me I have done well. Like a child I nod, speechless, and my eyes fill with tears. Saline first, cold as it starts its journey around my veins. Or is it arteries?
I read my book. There is an art in choosing a cancer ward book. Easy to read in short bursts, not long descriptive passages that cause the eyes to droop, the mind to wander, but engaging enough to distract from the horror of my surroundings. And they are horrific, and also banal. A roomful of sick people, mostly women, attached to drip stands by snakey orange cabling. Nurses busy with patients, or on the phone or the computer. This is their territory, marked out with plastic-covered reclining chairs positioned in a circle around the perimeter, all facing inward even though we patients mostly don’t want to look at each other or make conversation. The radio plays and occasionally one of the nurses will sing along. It is always Radio 2.
The woman next to me is watching Line of Duty on her iPad. I think she is about my age and I think she smiled at me; hard to tell as she is masked, with a paisley-patterned turban, blonde hair which looks real poking out from underneath. Some patients take real effort with their appearance. Painted nails, eye make-up, pressed trousers. And that’s just the men! Ha ha. Others have gone for comfort — muddy-coloured fleeces, thick socks. I dress for ease of access to my right arm — loose sleeves, and layers that I can take off as the chemicals warm me from the inside.
Leanne comes to change the saline drip to chemo. She checks my date of birth, my name. What would happen if I couldn’t remember? Up goes the bag of clear fluid, looking innocuous, benign. This is the drug that over the next two weeks will cause nerve pain in my arms, hands and feet which will wake me up, crying. This is the drug that will destroy my mucous membrane, creating the optimal conditions for tiny, excruciating ulcers to bloom in my mouth and up my nose. This is the drug that will give me a permanent headache, like low-level humming from the fan by my bed. This is the drug that will make me so tired my brain can’t form words, I forget the names of familiar things, I’m unable to answer the simplest question. “What would you like for tea?”. I don’t know, you decide.
This is also the drug that I hope will stop the cancer coming back. I have not personalised my cancer. It isn’t pink. It was a surprising and unwelcome guest in my body and I have done everything I can to evict it. Although that isn’t quite true. I haven’t maintained a positive mental attitude at all times. Some days I cry. Other times I get angry. This is so bloody unfair. I glower at women who have two breasts. I hate them. How dare they be intact, and so obviously unhealthy? I don’t eat KFC. I don’t drink a lot. I gave up smoking thirty years ago. I exercise. Why did this happen to me? If I could work that out I could stop it happening again, or so the logic goes.
Every day when I get up I stuff a special bra with a fake boob. It reminds me of when I was 12 and worried about whether I’d ever have breasts. I cream my face, which seems to acquire new wrinkles daily. I have a special moisturiser for my vagina and labia, which I’m warned by the nurses could atrophy any time because of the anti-oestrogen pills, and an oil for my mastectomy scar. I like my scar. It is a symbol of survival, surrounded as it is by mottled brown skin, a legacy of radiation. This is how I do things now. Slowly. It’s hard to fasten my bra behind my back. I stretch up to the ceiling, wincing; my arm shakes, the tremor in my hand more pronounced.
Today I have a Zoom meeting before I set off to the hospital. It goes well, but I am distracted, trying, and failing, to be sympathetic. I think but don’t say to my husband,“Just shut up about your stupid sore throat. Get some perspective.” Because he has a right to be ill too. It isn’t a competition.
Everyone has problems. Mine are no worse than anyone else’s. I remind myself how lucky I am: a husband who takes me to every single appointment and waits in the car for me, Covid restrictions meaning he isn’t allowed in very often. Work that I love and that I think makes a difference, helps the people who are trying so hard to look after people like me. Extraordinary friends and colleagues who inspire and support me, who know when to offer comfort and when to challenge me. Children who have made my illness their business, and still need me to be their mum. Siblings who drop everything to come and look after me, and remember that Billy needs support too.
I am very lucky. And also unlucky.
Back on the ward, the drip is signalling its emptiness in staccato beeps. Leanne is busy with another patient, explaining that constipation is to be expected but if it goes on for more than a few days she should ring the ward. They can give her something. There is very little privacy here, and we have all discussed our bowels with the nurses, other patients occasionally offering advice. “Bananas, that’s what I take.” I don’t want an image in my head of this frail, yellow woman on the loo.
Leanne comes to remove the needle, clamping cotton wool on the wound which spurts blood as the cannula is withdrawn. “Press down hard,” she says and I do, and no, I’m still not allergic to plasters, and she sticks a pink one on the already purpling skin and off I go.
“Bye everyone,” I wave as I head to the reception desk for my orange card, now updated with my next appointment. These are not offered, they are instructed and, not infrequently, there is a clash with a work event. This is greeted with surprise, a look that says, “Oh! You have other things going on which are as important as your treatment?” No, obviously I don’t. But I do have a workshop with 30 senior clinical leaders that day, no back-up and a need to earn money.
There is a sigh from Wendy, but the appointment is changed so that I won’t have to hurry back from London. I text Billy. “Finished” and leave the ward. Stairs down, lift up.
Today I have been a cancer patient. I have also been a wife, mother, sister and daughter. I have worked on programmes, made appointments for coachees, so I have been a facilitator, a coach, a manager. I have been a friend and a colleague. I was a poet, writing haikus about my experience. I have been a woman, all day. Now as I step out into the soft evening rain I gather my self around me, straighten up and walk to the car, where Billy is waiting.
Belinda: What about you? Who are you today, how has that been impacted by grief?
Brigid’s Story:
No one really knows what to say to someone who is grieving for their life partner. I wouldn’t know what to say to me! Now I know that I prefer the clumsy and crass to the platitude and cliché. Most of the time, it’s humour and lightness which seem to work best. What I really want is to feel ‘normal’ again…
Jim was diagnosed with acute lymphoblastic leukaemia in September 2019. It was a rare form of a rare type of cancer for adults, more typically known as ‘childhood leukaemia’. He just seemed to understand, right from the outset, that his chances of getting better were slim to non-existent. He died on 6th February 2020.
Throughout February 2020 many people kindly asked me how are you doing? — and naturally they meant how was I coping with Jim’s death, and my life without him. And then along came Covid. Imperceptibly the focus shifted as Covid and lockdown became a harsh reality for us all. From then on how are you, are you OK? was more likely meant in the context of the pandemic, along with everyone else. Of course I understood this shift. After all, we were all in that extraordinary situation together. Making the best of it, trying to stay calm. But to me, when asked are you OK?, it still meant — and still does now in fact — how are you doing in the face of losing the single most important person in your life?
I remember thinking for a while in 2020 that Covid had ‘stolen’ my time to grieve. It felt then like things weren’t going to be ‘normal’ again for all of us. But for me, even before Covid, things were already never going to be normal again. Without my wise counsel, my lover, my confidante — without Jim. My sense of identity, how I felt about who I am, had been rocked irretrievably. I was a wife, a soul mate, an equal part of the most balanced and loving of relationships I’ve ever been lucky enough to know. Now I am no longer any of those things. Except I still felt as if I was. Nearly 3 years later, I still feel it… and I still wear my wedding and engagement rings.
Aloneness
To be out of step,
unsure what to do, how, and
feeling that alone.
It was simpler then:
we just knew how it would be.
It was beyond words.
I face this alone. I don’t say that to evoke pity. It is a simple fact. Many kind people offer generously to speak to me, check in on me. But none of them can ever take his place, fill the huge chasm left by Jim in my life. Our life.
I was not ready to be alone. I know I had more opportunity than many to talk candidly and openly with their dying partner about his death. Jim made very sure of that — with his characteristic wisdom, care, love, and wicked sense of humour. Even so, I didn’t know — how could I possibly have known — what it would actually feel like to live here, in our home, on my own. After 17 years of living so closely, so meaningfully, so lovingly together with him.
Things get compartmentalised, don’t they. Maybe it gives an illusion of some order and control. But so much in our lives does not fit so neatly into tidy compartments. Nothing fits neatly anymore for me since Jim’s death. That’s not to say that all of my life is tough and out of place now, or that it was all smooth and tidy before. It’s not that simple. In living with grief, both for the loss of Jim’s life and for our life together, it’s not neatly divided into ‘good’ and ‘bad’ days. That’s the point. It’s all mixed up. The good and the bad, the light with the shade, the joyful and the sad.
In truth, my grief is with me all of the time. Sometimes it’s a low hum in the background, quietly punctuating all of my interactions. Sometimes it’s a loud piece of music which stops me completely in my tracks, forces me to listen with all of my soul, and breaks my heart all over again. Other times it’s a beautiful song, his sonorous voice sharing those well-crafted and resonant lyrics and helping me to make some sense of it all through my cathartic tears. Painful as it may seem, I will always be able to listen to Jim singing. That makes me smile, reminds me how lucky we were to have had our time together.
What I do notice is that in living with grief I can no longer tolerate the false separations which are made in the apparent well-meaning attempt to make things feel ‘safe’ and measurable. Life is inherently unsafe and uncertain. The nature and the impact of our relationships are largely unmeasurable. It’s how we learn to live in this messy mix, in connection with each other, which matters.
Grief is messy and unfolding, and it cannot be compartmentalised. I can’t say ‘I’ll do my grieving on Tuesday afternoon’ and ‘on Wednesday morning I’ll be the super-efficient professional coach’. And why would I want to do that?
That’s what I am continuing to learn — often painfully, sometimes joyfully — as I live right in the messy middle of grief. Grief — life — doesn’t pass in neat stages with clear signals that this part is done & dusted now. It catches me unawares, it spins in slow motion, slaps me hard across the face, becomes a prop I lean on every now and then.
Living with grief is there all the time, as with any kind of trauma and hardship we might be experiencing. It doesn’t define me. But it sure as hell shapes me, tinges every interaction, colours every thought and feeling.
And that’s not all bad; there’s the conundrum. It’s a tricky thing to admit that there is so much rich learning in going through the experience of grief and loss. Of course I would rather I wasn’t experiencing the trauma of grief at all, that the awful cause of this grief hadn’t happened in the first place. But the fact is that I am, and it did. And being able to live right in the messy middle of it all, noticing and learning what it means for me and for how I can be with others around me, feels really important. I don’t want to waste it.
It’s the hardest thing I’ve ever experienced. Seeing the person I love die, and then carrying on living without him, and beyond our life together. It’s making me think differently about how I now live my life. What I say out loud, what work I do and with whom, the connections I make. It means that I’m having to come to terms with living alone. With what aloneness, as distinct from loneliness, really means. Neither confronting nor avoiding it. Walking alongside it.
Jim was not angry in the face of his early death. He did not think it was ‘unfair’ that he had leukaemia. Yes, he thought it was a bastard. But he didn’t blame anyone, or shout at the moon. He calmly accepted it, and spent his last nearly two months making sure that everyone he loved was OK with it too. However, he was the one who said that he “had it easy”. Well, really, he was the only one who was allowed to say that. “After all, Brigid, I don’t have to live without you…”, he said with such generosity and love. And neither of us could have known then what it was going to be like to live alone, without each other.
***
In the Messy Middle
In our silences
lies much that is unsaid, but
it is understood.
I grieve for the life
we’ve lost, the unthinking hope
for the years to come.
What we have is now.
It will be enough. We can
still look forward.
***
There is no set path:
we were lost and found our way,
and now who knows where.
Thank you for reading. We could have carried on making changes to what we’ve written, editing it down into a neat readable “5 minutes”. But this is our life unstuck in the messy middle — and it doesn’t end here. You can find us on Twitter where we carry on this and many other conversations as @brigidrussell51 and @weirb4
