This week’s wine pairing music is ‘Slipping Away’ by moi.
One of my least favourite things about being ill is having to say thank you all the time for things you’d rather do yourself or things that you’d rather not go through at all. ‘Thank you for mowing the lawn’ I dutifully say to my husband, ‘thank you for reaching up for that book’ I say to my kid. ‘Thank you for massaging my shoulder’ I say to the acupuncturist, ‘thank you for not minding about cancelling the holiday/meal/party/day out/concert’ I say to almost everyone. Some days the ‘thank you’s’ stick firmly in my throat. It feels like a lodged fur ball in my oesophagus, but instead of coughing up fluff I think it would be litres and litres of black, viscous bile. All the rage, the disappointment, the fear and resentment that having to say constant thank you’s cooks up in your insides. ‘Sorry’ comes a close second, especially as the latter part of the sentence is, 99 times out of 100, left unspoken. ‘I’m sorry that I was a bit grumpy with you earlier (I am in so much pain today that I threw up my lunch a few minutes ago.’ ‘I’m sorry that I won’t be able to come tonight’ (I am so exhausted that I couldn’t even get out of the bath and had to be hauled out like a beached whale by my ever-patient husband.’ ‘I’m sorry I’m so pale (the AS and endometriosis cause anaemia and I’ve already had three blood tests this week.) The sorries and the thank yous- tens of times a week, hundreds in a year, thousands over a lifetime. I have filled my whole adult life with them and each one inexorably chips away a tiny piece of what makes me, me. Some days I think that there will be nothing at all left.
One of the only times that I got upset with my former therapist was when he confidently declared, ‘you are not your illness.’ I wanted to scream and scream, until the noise filled the world with my pain. Because what I desperately wanted him to understand is that my illness is wound into every decision, every waking moment, every conversation, every kiss, every broken night. It’s in my laughter and sorrow and it’s inexorably interwoven with the music that I write- they all bleed into my disease, which is in literally every atom of my being. I know what he was trying to say and it was a kind sentiment. He meant that he could still see and appreciate the funny, kind, intelligent person that he saw before him. The problem is that I lose sight of her a little more each day. It’s like being in a nightmare: I stand in a dense mist and am slowly pulled backwards by an invisible force, receding not only from those who love me, but also from myself. I try to explain to aforesaid therapist that when I wake in the mornings I don’t ever know what mood I am intrinsically in. Pain is my first thought, and it’s really hard to be in a good mood when you’re in extreme pain. I long for my first thought of the day not to be ‘how am I going to get out of bed today?’ I simply can’t imagine a life of just ‘being’ - what a glorious sense of free-wheeling freedom it must engender to wake up and think, ‘how do I feel today? Am I full of the joys of spring, annoyed with my friend, a bit tired?’ I cannot separate myself from my illness, no matter how hard I try. And by God I’ve tried. (If God did indeed love a trier then I’d be absolutely laughing by now.)
I also think about what I could do with the time that all those sorries and thank you’s take up. Being ill is a full time job in its own right. Some days I’m surprised that I have time to fit in anything at all. What must it be like to be able to cut a melon yourself or to put on your bra without having to wait for someone to do it for you, not to be on hold for an hour to your medication provider before you get cut off and start all over again. I have lost hundreds of hours in grim NHS rooms like this one, and the loss of those precious minutes stings.
I read Jeanette Winterson’s Substack today about finding your passion. It rankled with me (and I’m not picking on her because everyone else loved it) for a couple of reasons. She says, “you might be in a bullshit meaningless job. Don’t drive yourself mad. If you can’t change it - make it work for you, by which I mean, if it’s just a pay packet, accept that, and hoard your treasure elsewhere.” I find all the ‘just make it work for you’ rhetoric really challenging. This stuff is often peddled by people who are a) actually in their ideal profession and b) rich. It feels icky to tell a single mother who works three jobs that she can just get out there. Where do the hours, energy, childcare, money come from to just magically ‘make it work’ (especially when you’re so tired from all the actual work?).
She goes on to write,“people still sing in choirs, play in bands, form reading groups, baking groups, bike round the world, or just bike to work every day. Learn a language. Remember that they always wanted to tap-dance. Buy that rusted car and spend weekends in a freezing garage. Go wild swimming. Build a model railway.”
And this is where I got sad, because the health privilege in her words drip off the page so carelessly. How do you bake bread when your hands don’t work? How do you go to choir if you’re immunocompromised? How do you spend time in the freezing garage when you can’t regulate your temperature? How do you you tap dance if you’re in constant chronic pain? (It did make me laugh a bit too though, because the hobbies were so stubbornly middle-class.)
I digress.
The only time I feel truly frustrated with Dan is when he is grumpy about doing something like mowing the lawn. ‘I would give anything, anything to be able to do that myself.’ I sigh childishly. Don’t you realise how lucky you are? Don’t you think I hate asking you to do it when I know you don’t enjoy it. And you know that I loved mowing the lawn and I want to do it myself so just do it with good grace because you can.’ I hear how it comes out and I really can’t stand the person who pain turns me into. Of course it’s unfair and unreasonable to expect Dan to be my genie in a bottle- he’s also a person who has to be allowed volition, tiredness, agency. But the toddler strop also holds within it such a deep, fundamental longing: we all want to have autonomy in our lives. Disempowerment is a word that’s frequently bandied about, but I can’t think of a better one to describe how it feels to be constantly letting go.
My brother is a triathaloning, Iron Man, Tough Mudder obsessive and one day, after a gruelling run he told me that it felt like his ‘back was breaking into a thousand pieces.’ At the time he was sat next to our dying, deeply distressed father. He went on and on, moaning and sulking about his body and how pissed off he was that he had to stop at a mere 11 miles. On that day, I was in bed, curled in pain, unable to move or breathe without gigantic, greedy spasms in my diaphragm eating away at every gasp of air I desperately tried to snatch. I had a large, superating wound on my leg because the steroids had made my skin so thin that when I fell onto a tap in the bath the skin ripped as easily as tissue paper. My brother has never asked me about my illness; I doubt he could tell you the name of my disease and he’s never offered up help, support or kindness in any form. We are both products of our painful childhood and those experiences formed us into two sides of the same coin. He turned inwards, intent on corporeal perfection and optimisation whilst I rejected the flesh and became a martyr intent on prioritising the needs of others.
A. the therapist helped me to learn I am exceptionally proficient at intuiting others needs but that it’s unrealistic of me to expect the same from others. I know he’s right, so for the first time ever with my brother, I try. I leave a voicemail on WhatsApp. ‘It’s very hard when you say your back is breaking, as mine is, literally, shattered. You are so lucky to be able to run. I used to run but then the doctors said I shouldn’t run anymore. I used to do step and kick-boxing but then I couldn’t do that either because it was too high-impact. I used to swim, and then my shoulder froze and I couldn’t do that anymore. And when I couldn’t do swim I decided that I wouldn’t be beaten and that I would walk instead. But then I got Achilles Tendonitis in my ankle so I couldn’t walk anymore. So I decided I would cycle and then my proprioception went and I couldn’t cycle and then it hurt too much to do anything and I can’t lie or sit or stand without being in so much pain.’ My voice starts to wobble, ‘so please, please, find other people to complain to because you have so much and like I said you are so lucky. Just enjoy the feeling of freedom, revel in all the things your body can do and enjoy all of it.’ He doesn’t reply and then a few days later, there is just a thumbs up emoji in response. I sink and shrink a little further back into myself. Nobody understands, or maybe they do and it’s just too much effort so they pretend that they don’t.
There is no solution to this diminishment. I think that there is only acceptance. It’s so overused a word as to have been rendered impotent but I remain determined to keep trying to find meaning and dignity in a life that has been so curtailed by illness. I know that I’m supposed to end on more of an up than this- to tell you that what I have learned is worth the pain. But it’s not- it never was. I did have a little walk with Dan earlier though, and I saw a squirrel that looked exactly like Donald Trump. Maybe that for today, is enough.
I used to give blood, which was important to me, but my meds now prevent that. My husband, an intermittent donor, said he didn't want to any more because he was embarrassed about his body size.
I lost it (a rare event). How dare he take the privilege of health for granted? He now donates regularly. I am vindicated, not only for myself but also for our daughter, who has needed a few pints during her cancer treatment.
Thank you for your writing. I'm sorry you've had such a brutal time.