Another thing: A smaller world

Some thoughts about illness, community, and curry.

Welcome to Letters From the Knot. This is a free weekly newsletter, primarily built as an outlet for a fiction writing project I’m working on. On the weeks I’m not publishing fiction, I’ll be sending something a bit more freeform and personal. This is one of those.

“I had come to understand that despair does not necessarily result in annihilation, that one can go on as usual in spite of it, I had become hardened. Was that what it means to be an adult, to live with ugly ambiguities? I didn’t like it, but it made it easier to go on.”

- Banana Yoshimoto, Kitchen

It’s been four weeks since my partner’s latest relapse began and this is the point at which the real cruelty of chronic illness becomes clear. Most people can relate to being ill for a week, even two, but four? Two months? Even with the best will in the world, our powers of empathy start to diminish, I think, over time.

And for the ill person, sad milestones are reached. Yesterday I started throwing away the flowers that people sent at the start of this latest bout, wilted and sagging long before her health has meaningfully recovered. They’re only flowers but, as they die, so does the fragile illusion that this is a short term thing to be waited out. Of course, that’s never the case when someone is chronically ill. Even at times of good health, the spectre of that illness is always there. It’s never fleeting.

This newsletter wasn’t supposed to be about her illness, but it just so happens that this relapse started a few hours after my first post. Since then, her world has shrunk. She’s limited, now, to walks around the park, or brief visits to local cafes, always carefully balancing the joy of being around people with encroaching pain and the fear of making things worse. For the most part, she’s confined to the flat, rewatching old films and always working to find a comfortable position to sit in. There's something diminished about her life now.

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There are strange echoes to this latest relapse. Two Novembers ago, the whole country was locked down, and so there’s something familiar about staying in every night while a grey chill wraps itself around the city. The difference is that, in that instance, the whole country was in the same boat; there was a sense of something shared and time limited. It was a novelty.

One year ago, we were locked in again, that time because we both got covid. In that case, we were able to share the discomfort and boredom with each other and, because we caught it at a party (a fun but ultimately doomed party), about 15 of my friends were ill at the exact same time. As grim as it was, we were kept afloat by the group chats and by recommending TV shows to each other, kept going by the sense of community that emerges through shared hardship.

This time, in many ways, she’s suffering alone, but community has proved no less important. I’m so grateful that so many of our friends have come to visit and sit with her, to watch TV and eat takeaways. It’s probably hard to imagine, for those people who just pop in to bring over a coffee or flowers or cakes, quite how important those acts are, how life-saving.

These visits feel like something of a vindication. A vindication of our (fairly passive) decision to spend the majority of our lives cultivating these relationships. It’s easy to look at your social life - all those nights in the pub, all that money spent on dinners - and chastise yourself for being frivolous or decadent. But really, that’s all life is. Finding ways to be with people, building a community. I wouldn’t change any of it.

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In the meantime we do what we can. There are a lot of bad days at the moment, but there are good days, and good moments, and you learn to appreciate them all the more for their rarity. In simpler times, when she’s not having a relapse, my partner sings continuously, and among the most conspicuous signs that she’s unwell is that the singing stops, and the air in our flat is tense and quiet and punctuated not by songs but by long sighs and phonecalls with doctors. On a good day, she’ll sing, and there’s no better feeling than hearing it all of a sudden and knowing that, at least for that moment, she’s managed to reclaim a little scrap of herself from the jaws of this thing.

You also come to appreciate the things you do have. I know how lucky we are to have our flat, and to be able to afford to have the heating on, and to treat ourselves to a curry when we feel like it. I just happen to have been reading Kitchen by Banana Yoshimoto this week. It’s a heartbreaking pair of novellas about grief and belonging and loneliness, but it’s also about the importance of coming together in the face of pain, and recognising love and support when it’s right in front of you. On top of that, it’s about the immense comfort that can be found in food and cooking. It’s been a timely read in the sense that it’s reminded me to be thankful for the simple joy of devouring a lamb saagwala and two too many onion bhajis and feeling painfully full for the rest of the evening. Even when things are as hard as this, it’s important to cherish these small pleasures.

I’m still very hopeful about this phase passing soon. She’s getting more help from more specialists, and there are reasons still to be optimistic. As people with chronic illness will know, it’s never fully over, but there is plenty of life still to be had. This newsletter wasn’t supposed to be about her illness, and I’m hoping that it soon won’t need to be.