Too Ill For Ikigai

Pain pushes purpose aside and all that matters is getting well

🌸 ikigai 生き甲斐 is a reason for being, your purpose in life – from the Japanese iki 生き meaning life and gai 甲斐 meaning worth 🌸

I would pay any amount of money I have right now to feel well. Every penny. Without hesitation.

That sentence would have felt abstract to me a fortnight ago. Now it’s the most honest thing I can say.

Just over a week ago, I was sparkling in Oxford surrounded by brilliant women who made me feel safe enough to cry and laugh and be too much in my own weird way. Last Saturday I managed to write an essay about that, mostly on the train between Stroud and Bristol. By Saturday afternoon, I was walking Bristol streets where I lived decades ago with my first husband R (father of W), feeling surprisingly neutral about it all. From Sun to Tues morning, I was in Stroud playing Minecraft with my daughter Willow (my favourite human, I grew her from a seed) and stroking Charlie, the world’s neediest cat, whilst her partner C showed us their first bought home together, nearly ready to move into in Cheltenham. I was having SUCH a lovely end to my birthday week.

Tuesday, my throat started cutting itself.

By Tuesday evening, on trains and planes heading home, I was swallowing fear along with the pain. By Wednesday, I was a couch potato with a jug beside me for saliva I was too frightened to swallow.

The misery of illness

There’s an anxiety loop that builds when you’re scared to swallow. You produce more saliva. The saliva needs to go somewhere. Swallowing feels like dragging broken glass through your throat. So you spit into a jug instead, which is vile but less terrifying than the alternative.

The nights are worst. No sleep for days, throat agony, head pounding, every swallow a calculation. Your thoughts want to spiral. You try to distract yourself. You doze when you can. You wait.

I had plans for Wednesday. My last day of leave. I was going to attend CyberIsle, be enthusiastic about our National AI Office announcement, participate in the AI Community of Practice on Thursday. I had energy saved up, ideas ready to share.

Instead, I lay on the sofa whilst my gorgeous husband Andrew walked the hound dog and made sure poor Henry wasn’t too confused about why I’d been gone for nearly a week and was now home but utterly useless.

Thursday came and I had to tell work I wasn’t able to make it back in. Friday. Still awful. Missing things. Watching plans dissolve. Unable to eat or drink much and feeling weak and incapacitated.

Today, Saturday arrived and I thought, right, I need to try. I need to be functional.

So I ran a bath.

Health is your foundation

Getting into the bath exhausted me. Getting out required sitting on the towel box like an old person, taking my time drying off because standing felt monumental. Two hours later, I’m still drained. But I’m clean. And vertical. And I managed a quarter cup of tea.

These are Saturday’s achievements. Bath. Tea. Contemplating a short walk.

This is what purpose looks like when pain takes over. Not strategies. Not considered essays about ikigai. Not enthusiastic participation.

Just… can you function? Can you be upright? Can you swallow without crying?

All those beautiful frameworks for meaning and purpose assume you have the basic capacity to pursue them. Illness strips that assumption bare and reveals health as the foundation everything else depends on.

I’ve had too many beautiful souls pass away far too early to not appreciate being here, even on days when things go wrong or you’re in pain.

But holding onto that perspective whilst feeling this bad takes work. Gratitude battles misery in the middle of the night when you’re scared to swallow and haven’t slept for days.

What I remembered

I’m foggy-brained and exhausted and still in pain. I’m writing because it’s Saturday and I want to keep my essay streak going, even when all I have to offer is that I miss feeling well.

The Dirty Nice gig in Bristol was brilliant. Willow and C’s favourite band, now mine too. That was last Saturday evening. By Tuesday morning, I couldn’t imagine feeling that alive again.

But I will. In a few days, probably.

And when I do, I’ll remember this. The jug beside the sofa. The towel box. The quarter cup of tea. The way Andrew kept everything running. The gratitude I felt just for being clean after managing a bath.

Health is an ikigai factor we forget to appreciate until we can’t.

Every purpose pursuit sits on top of a body that needs tending. We plan around meetings and launches. We budget for time and energy. We forget to budget for being functional enough to participate.

I hate being incapacitated. I hate not being able to do things for people. I hate feeling rubbish and not getting things done.

But wellness itself might be enough of an ikigai felt sense. Feeling well, being functional, having the basic capacity to show up… maybe that deserves more space in our purpose frameworks than we’ve been giving it.

If you’re reading this and you feel well today, appreciate it. I’m not preaching. I’m just telling you what I’d pay any amount of money for right now.

Tomorrow, I’m hoping for a short walk. Monday, maybe work. By next Saturday, hopefully an essay that comes from energy rather than stubborn habit.

For now, this is what I have. A bath. A quarter cup of tea. The knowledge that wellness is waiting somewhere ahead.

If you made it this far, thank you. Whether you’re well or unwell, struggling or thriving, your attention matters. Take care of yourself. Rest when you need to. And if you can, appreciate the ordinary miracle of feeling functional.

Sarah, seeking ikigai xxx

PS – If you’re feeling well today, notice it. Just for a moment. The absence of pain. The ability to swallow without thinking. The way you can get out of bed without exhaustion. That’s the foundation everything else builds. A journal prompt if you’d like to explore this feeling further “When was the last time I felt genuinely well? What did I take for granted that day that I’d be grateful for now?”

PPS – A simple AI prompt starter to explore “I’m currently feeling [well/unwell]. Help me notice and appreciate three specific things about my current state that I might be taking for granted. Then ask me gentle questions about how I could better honour my body’s needs this week.

PPPS – This week’s soundtrack has to be Dirty Nice with “If I was Abducted By Aliens” - one of my new favourites from the brilliant gig Willow, C and I caught at the Louisiana in Bristol on Saturday evening before everything went sideways. Their quirky cool music paired with amazing cartoon creations is exactly the kind of joyful weirdness I’m looking forward to appreciating properly when my head stops pounding and I can actually hear music again without wincing.