I sit with Joy in her kitchen. We are alone, for the first time. Sunlight streams through the patio doors casting light on the table and floor. I’m bathed in scorching sun while the rest of the kitchen is in darkness. The dog lays in the sunlight, hogging the heat, curled in a ball, ears pricked, watching outside, occasionally sitting up and growling when a bird lands on his garden.
‘Ginika tells me you’ve been spending a lot of time with her,’ Joy says, stirring the peppermint teabag in the pot.
‘We’ve met four times in the past two weeks. Has she told you what we’re doing?’ I wonder how secret these letters are supposed to be, if in sharing the concept with the group makes it less of a treasure for their loved ones. Bert had been open and confident to share his ‘quiz’ with them in the early stages but I don’t know if the finalised contents are sacred. I recall how Joy had taken to the altar at Angela’s funeral to lead the presentation, but it is unclear to me how involved they wished to be in each other’s gestures. I’ve witnessed the support group as a sharing of ideas, an encouragement and way to lift one another up on each other’s shoulders, then they part and think, return and share again. Perhaps my arrival to the club has meant that I am the one who is the sounding board and keeper of the secrets.
‘No,’ Joy shakes her head. ‘Ginika likes her privacy. She’s quiet, but formidable.’
‘She is,’ I agree. ‘She chooses her moments and when I least expect it, she lands a clanger.’
‘She does,’ Joy laughs. ‘She’s a smart girl. A wonderful mother. I don’t think I’d have had the gall to do what she does at sixteen, and alone.’
‘I don’t think I do now.’
She smiles. ‘You’ve been through it, Holly.’
‘Nothing made me feel more like a charlatan than being called a hero for surviving someone else’s death. Gerry was the one that suffered.’
‘Everyone suffers,’ she says gently.
We leave a silence. She tries to grip the teapot to lift it and I see how she struggles. I place a hand over hers to stop her, and take over. Silent, she withdraws her hand and rubs at her wrist, a motion I’m familiar with.
‘And you, Joy, how are you?’
‘My condition, you mean?’
‘I mean everything. You’ve been so thoughtful at organising everybody else, you make me forget that you are suffering too.’
She takes a moment, and I wonder if it’s to decide how much to tell me. ‘What do you know about Multiple Sclerosis?’
‘I know that it’s a neurological condition, but that it’s different for everybody.’
She nods. ‘MS is a progressive disease of the nervous system. It can cause a variety of symptoms, which may continue or worsen as the disease progresses. Fatigue, walking difficulties, changes in brain function, vision, depression, mood swings. There’s no cure. Not currently. Just palliative care, which helps prepare us for what lies ahead in the end stage.’
‘Are you in pain?’
‘Muscle spasms, nerve pain. Antidepressants for the neuro-pain spasms. I hate taking drugs, I never even used to take headache tablets. I do physiotherapy for the muscle spasms.’
‘You were diagnosed nine years ago,’ I say, looking at the dog and remembering how his age represented the time of her diagnosis.
‘Yes, and you’re right, MS is different for everyone, Holly. Someone can be stable for long periods of time. I was convinced I was fine even after diagnosis, that it was manageable, that my life wouldn’t change, but then it advances and comes back with a stronger force. The stick helps me for the time being, but we have that on standby.’
I look across to the folded wheelchair by the door.
I reach out and hold her hand. ‘I’m sorry we’ve lost time, Joy, but I’m here for you now, what can I do for you? How can I help you?’
‘Oh, Holly, you being here is a gift to us all. You have re-energised us, given us a goal. Spending time with each of us and listening to us, and guiding us is more precious than you’ll ever know, and you wouldn’t be human if you didn’t need time to think about it. I don’t think we considered how life-altering asking you to be involved would be. I hope we haven’t up-ended everything for you, have we?’ she asks, her brow furrowing.
‘Any problems I have are all my own doing.’ My smile twists, thinking of Gabriel.
‘Angela was a very resilient woman,’ Joy says. ‘She was convinced she could achieve anything she put her mind to and getting you on board was a mission she took on with gusto. I only hope I didn’t take up her challenge too selfishly.’
I agree, remembering how Angela had gripped my arm so tightly at the charity shop, her eyes boring into mine as she urged me to continue telling my story as if her life depended on it.
‘The last thing you need to worry about is my life,’ I say brightly. ‘So, more importantly, have you decided what to write in your letters?’
‘I think about them all the time but I’m no closer to knowing what to do. My boys will be OK, they have wives, families. My main concern is Joe. I’m worried about him. He’ll be lost.’
I recall him fumbling around the kitchen on the first day I met him, trying to locate simple items, being hit on the head by a broom in search of milk. I try to imagine his home without his wife at the helm; despite his years living here, to him it will seem an alien environment filled with mysterious storage spaces.
‘I’ve noticed he’s a little lost domestically,’ I say, as tactfully as I can.
Joy surprises me with laughter. ‘You’ve noticed that already in the short time you’ve spent here. The children always tease him, but I take full responsibility for him being “lost domestically”. I’m sure we seem very old fashioned to you,’ she says, smiling. ‘My sons are equal in everything in their homes, and with their children. But Joe and I always liked the way we are. While he was at work, this was my territory. I was never good at sharing. I wash and clean his clothes, iron, make the dinners, do the food-shopping, cook, everything. I never used to let him do anything – not that he tried, because he had no interest. Since he retired, he’s been under my feet. He means well, but it takes him a lifetime to find anything.’ She grabs my arm, and leans in conspiratorially. ‘Don’t tell him, but sometimes when the pain is bad and I can’t stand it, I ask for things that I know he’ll take an age to find just so I can have some peace and to make him stop fussing. God forgive me.’
We laugh, a clandestine pair.
She ponders. ‘I’ve been thinking about what you told us about your letters from Gerry, about them not being reminders of death but about how they enabled you. I want to give Joe a boost after I’m gone. We’re not sentimental, Joe and I. I don’t think slushy mushy love letters will be what he wants. I’ve tried to write them …’ She shudders. ‘It’s not our style. If anything, he’ll think I must have lost my marbles. I want him to read them and feel as though it’s me. But I’m not a writer, Holly,’ she shakes her head. ‘I don’t have the imagination.’
‘Gerry wasn’t a writer either, believe me, but he was thoughtful. He knew me, he understood me, and that’s all you need. I think you need to imagine Joe’s life from his perspective and then try to decipher what gesture or words of comfort can make his tough times easier. We’ll think of something, don’t worry,’ I say, mind wandering.
I recall how useless I felt after Gerry’s death when the heating broke down in the house or a bulb went. It’s not that I was incapable, it’s that we all have our duties in a household. We find our niche and we stay in it, and often, in the everyday busy-ness of life, we’re unaware of what role the other plays, exactly what it is they do. In the case of Gerry and me, I always felt I was doing more than him, the same internal argument over and over. Only when he was gone did I realise the gaps, the extra things that I had never done and didn’t know how to do. The phone numbers I didn’t know, the codes, the accounts. Little things, normal, mundane, everyday acts that aided the flow of life. A Rentokil account. The Sky customer password. The phone number for a plumber. We each had our roles and Joy’s role is changing considerably, of great consequence to Joe. I sit up, feeling inspired.
‘You don’t want grandiose declarations of love, so what if your letters were simple but effective? Guidelines for Joe. A map of where everything is in the kitchen. A list of what’s in the cupboards. Where the ironing board is, how to iron his shirts.’
Her eyes light up.
‘What’s his favourite meal?’
‘My shepherd’s pie.’
My. In control in her home. Her home, her kitchen, her place. No room for Joe. ‘How about a recipe and instructions so he can cook your shepherd’s pie? A scrapbook to help him get through domestic hell without you.’
‘I like it!’ she exclaims, and claps her hands. ‘It’s exactly what he needs and it’s fun too, he’ll have a laugh, as well as being guided. Holly, that’s perfect!’
‘I think I would have benefited from a few less empowering letters from Gerry and more mundane notes about the day-to-day running of things in our life,’ I say smiling. ‘Joy’s Scrapbook … Joy’s Guidelines for Joe?’
She thinks, smiling and eyes twinkling, enjoying where her mind is travelling. ‘Joy’s Secrets,’ she says finally.
‘Joy’s Secrets,’ I repeat, smiling. ‘We have it.’
We start to make a list of the ideas we have for her scrapbook. Joy begins writing but her hand spasms and she drops the pen, and as she rubs her wrist and arm I take up the gauntlet.
I wander around her kitchen opening cupboards and taking photographs of the contents while she sits at the table quietly, watching me, constantly pointing things out, offering a tip, a trick, a secret. She is territorial about her home, everything has a place, and a reason for the place. If it doesn’t fit, it goes in the bin. Not a single bit of clutter, labels all facing front neatly. We’re not exactly creating fireworks with Joy’s scrapbook idea, but it’s tailor-made for her life. Just as every relationship and marriage is unique and individual, the embodiment of those two individuals tangled up together, this service is representative of their union and must be bespoke.
As I move around taking note of everything, I wonder if Gerry did the same thing when thinking of letters for me. Did he observe me and try to figure out what I needed? Was he all the time thinking of his list, enjoying the secret, while I had no idea what was going on in his mind? I’d like to think it calmed him, that in his moments of pain and discomfort he was able to distract himself and go somewhere else, escape into the pleasure of his secret plan.
I notice Joy’s been quiet for a while and I stop cataloguing the kitchen and check to see if she’s OK.
‘I wonder if I could ask one more thing of you,’ she says as I meet her eye.
‘Of course.’
She reaches into the pocket of her cardigan and takes out a folded envelope. ‘I have a shopping list here. I wonder if you could help me. All the money is inside, cash, and there’s a list.’ Her fingers tighten briefly on the envelope. ‘I’m sorry to ask. It’s a lot to ask of you. My boys, their wives and our grandchildren. We have a tradition on Christmas Day where Joe and I stand at the head of the room, by the tree and everybody gathers around. Joe pulls a name from a Santa hat and announces the family member and we present them with their gifts. We’ve been doing it for years, our own family tradition.’ Joy’s eyes flutter closed, as if she can see it in her mind’s eye. ‘All the little ones love it. I don’t want them to miss that this year. Joe doesn’t know the little things that they like.’ Her eyes open and with a trembling hand she holds out the envelope.
I pull a kitchen chair out and sit beside her. ‘Joy, Christmas is six months away.’
‘I know. I’m not saying I won’t be here, but I don’t know what state I’ll be in. You know they say that my brain will be in such decline that I will forget to swallow.’ She raises her hand to her throat and squeezes, as if imagining it. ‘The palliative care prepares me for the end, but if I’m planning a future with feeding tubes, then I need to plan not just how I feed myself but how I can continue to feed my family too.’
I look down at the bulky envelope.
‘I know it’s a great imposition, but if you could also wrap and label the gifts for me, I’d like to store them in the attic for Joe to find when he takes down the decorations. As part of Joy’s Secrets,’ she says, too brightly, trying to make it sound easy when it’s not, it’s anything but. Perhaps she’s trying to screen the sadness that pummels beneath, or perhaps she’s genuinely ready for it. I’m learning about this wish for the first time whereas she’s thought about it, envisioned it, imagined it, probably lived the very moment when Joe finds the box over and over again in a dozen different ways. Perhaps she’s keeping it upbeat for me.
‘OK,’ I say, my voice coming out as a whisper. I clear my throat. ‘But let’s make a deal, Joy, if you’re able to hand those presents to everybody by yourself, those gifts are coming down before Joe discovers them.’
‘Deal,’ she nods. ‘This is a lot to ask of you and I’m grateful, Holly,’ she says, taking my hand. ‘I hope it’s not too much.’
It’s all too much. Everything. All of the time. And then not at all, sometimes, depending on which version of me wakes up.
‘Can I ask you something?’ I look at her for approval before continuing. ‘Why are you doing this?’
She seems confused.
‘I know why in theory, but I want to understand exactly why. Is it because you’re afraid they’ll forget you? Is it because you don’t want to feel left out? Is it because you don’t want them to miss you?’ I take a breath. ‘Is it more for you or for them? Asking for a friend.’
She smiles, understanding. ‘Everything you said. Everything and more. I can prepare myself for what lies ahead of me, but can’t let go before it happens. I can’t simply give up. I’m a mother, I’ve always thought ahead for the little ones. And even though they have little ones of their own, I won’t stop thinking ahead. I want them to feel like I’m there with them, and I suppose it’s because I won’t let go yet. I won’t surrender. It’s the only control I have over my life. I don’t know when my last day of quality will be, or my final day for that matter, but I’m going to make sure I’m around for more than my body could hold out for. I want to live and I’m trying everything; medicine, treatments, care, and now letters and lists. I may have lost control of my body, but I can control what happens in my life, and how life can be for others when I’m gone. It’s the last victory I have.’
As I make my way home, I ponder Joy’s words.
The last victory.
Death can’t win. Life lives on.
Life has roots, and just like a tree in its quest for survival, those roots spread and stretch to find water, they possess the power to lift foundations, uproot anything in their path. Their reach is endless; their very presence has an everlasting effect in some form or another. You can cut a tree down but you cannot kill what it started and all the life that sprung from it.
To most people, death is the enemy, a thing to be feared. We don’t see it as the pacifier or sympathiser. It’s the inevitable fate we have feared and done our best to avoid by minimising risks, by following the rules of health and safety, and by resorting to every treatment and medicine that might save us. Don’t look death in the eye, don’t let it see you, don’t let it know you’re there; head down, eyes averted; don’t choose me, don’t pick me. By the rules of nature, it is programmed into us that we must root for life to win.
For so very long in Gerry’s illness, death was the enemy, but as is so often the case for those dealing with a loved one suffering terminal illness, there came a point when my attitude changed and death became the one thing that could offer peace, that could ease his suffering. When the hope of a cure is gone and the inevitable is inevitable, there are moments in long nights spent listening to short ragged breaths when death is invited. Death is welcomed. Take them away from this pain, guide them, help them, be kind and be gentle.
Even though Gerry was too young to die and he did everything he could to fight it, when he needed to, he turned to death, saw it as a friend and went to it. And I was relieved, grateful to death for taking him from his suffering and embracing him. In a strange and wonderful way, the thing you have avoided, dreaded, feared is right in front of you and it’s bathed in light. Death becomes our saviour.
Life is light, dying is darkness, death is light again. Full circle.
Death is always with us, our constant companion, in partnership with life, watching us from the sidelines. While we are living, we are also dying; every second spent living is a second closer to the end of our days. The balance inevitably tips. Death is there at our fingertips all the time and we choose not to go to it and it chooses not to take us.
Death doesn’t push us; death catches us when we fall.