I want to talk to you about what it means to look at the thing you’ve been avoiding.
Right now (Thursday, end of April) I’m supposed to be at the seville feria but I’m not. I am exhausted and motionless, with a fever and a stomach that up until yesterday couldn’t keep down water. But it’s okay.
Except it’s also kind of not okay.
Lately I write that phrase”but it's okay”, almost as punctuation. Without thinking. As if it has no meaning.
I want to talk to you about what it means to stop hiding behind “okay”. I am learning that “But it’s okay” is an apology.
I want to talk about what it means to not apologize. What happens when you don't break the tension. I want to talk about my growing suspicion that the tension holds some of the answers I've been seeking all this time.
*
For the past month I've been mostly in bed. It's been sad and intense in parts, but it's also been such a beautiful time. I've discovered the poetry of Mary Oliver, looked out windows for long stretches, got to know my mind and body and memory in a deeper, richer way. I have spent cosy evenings with the love of my life.
Yet I am so afraid to tell people that I have been in bed for over a month, especially those who have cared for me for years, who have grown grey hairs worrying about me, whose faces light up when I'm “well”.
Society has given us no indication that a life like mine could ever be okay. Society has given every indication that being okay means being different from how I am right now. That it means escaping the basic facts of my reality and transforming it into something else.
And so I fudge the numbers. I make it sound like I'm healthier than I am. And when I have to report to back home about how my life has been, I say it with fear, like an apology.
But it's okay but it's okay.
I'm sorry I can't light your face up.
There was a time as a teenager when, before I went to a party, I would be excited about the Instagram post I would make afterwards. It was a social currency in which we performed fun. Now, I truly don't care about that sort of thing. I am more interested in using digital communication to connect and maybe shine light on small truths, rather than create mirages. But the truth is that I was excited to send a video back home of me dancing sevillanas at the feria on WhatsApp to my family. I was thinking about the picture, just a little.
Maybe the picture was an apology.
But for what?
*
It may surprise you to know that among the many small things that pushed me towards this decision to have a “silent year” (see last letter) was the film “Stutz” by none other than mr jonah hill.
In Stutz we see Hill confront what is essentially his shadow self. It is the person who experienced enormously traumatising fatphobia on a huge scale, a version of himself that he has built his ego and self image on moving away from. In essence, the further he feels from his 14 year old self, the better he feels. Stutz teaches him that the true healing, the true progress cannot be achieved until he makes peace with his shadow.
When Hill sat beside a lifesize cardboard cutout of his 15 year old self, I could almost visually see what my equivalent would be. In the past, I’ve called the feeling *sludgy*.
She’s the girl who hasn’t been out of bed for days or weeks. She has a bleariness to her. Her mum can tell she’s about to crash before she knows- while she’s still in delusion- -because her mum notices that she cannot fully focus her eyes.
I work hard not to feel contempt for this girl. I accuse her for causing trouble, for turning hairs grey. For lacking wit and talent. For having been bullied and mocked.
I feel desirable, intelligent, and “good enough” when I am as far from that girl as possible.
I have a feeling Mr Stutz would have a few things to say about that.
*
Meanwhile, I’ve been thinking a lot about addiction. The philosophy of addiction recovery is so beautiful to me because it is so human. When I started looking into healing my body when I was 19, so much of the supposedly empowering advice was based on a mix of ableism and prosperity gospel, but I suppose I did not feel I could afford to notice that then.
Within the 2017 wellness movement (or the pocket I witnessed), there was no room for the idea that bodies are different. There was an unspoken creed: that a body that did and ate the right things would be healthy, and a body that did and ate the wrong things would be sick. This is an ableist idea but it's also a seductive one. I was scared. I wanted a story where I had the power. I didn't just think my illness was my fault, I hoped it was. Because if being sick was was my fault, I could do better. But if it was random, medical, a twist of fate- I did not see how I could survive. I wasn't ready for a body with that prognosis, and perhaps I wasn't ready to confront a universe, a human condition, with so much frailty, so much left up to chance.
I was told by the internet, by doctors, by family, that not “identifying” with my illness, that essentially keeping a pleasantly delusional mindset, would help me. And there’s some peer reviewed scientific truth to that. The placebo effect, etc.
But at what point does that become harmful?
At what point does that stop being “the power of positive thinking” and start being denial and self loathing?
The addiction recovery world is so different. It tells us not that we are worthy of our delusions because we are better than everyone else, but that we are worthy of the truth, and of freedom from delusion, even if it’s hard, because we are human. Because we are EXACTLY like everyone else. If the other world says “other people are fucked up but you can be pure, heal your illness, live on a beach in hawaii”; the recovery community says the opposite.
It says: be fucked up and don’t hide from how fucked it all is. Don't bury yourself in whatever it is you use to not feel.
Your job is not to be perfect or free of pain, but to engage fully with your beautiful, brutal, miraculous life.
*
So here’s the truth I’ve been facing this week. I am missing most of the Seville Feria. I was also in bed for much of Semana Santa. I was in bed all of December, when the city was lit up in lights. Almost every season, every holiday that I anticipated seeing in this glorious region, I have had to miss to some extent. This confused me. I keep telling people at home that I’m the healthiest I’ve ever been- is that a lie?
So, lying in my bed, I did some math. I added up the months and weeks since coming here that I was well, walking around, working, making friends, and the months and weeks spent in bed. It was close to 40/60, the majority being sickness. I have spent more time incapable of getting to the end of my street than capable, since coming here.
That statistic floored me.
I had had no idea.
And yet suddenly that made so much sense. No wonder I hadn’t done all of the things I thought I should have. No wonder I’m not fluent in fucking Spanish despite being ostensibly kind of a language guy!
The thing is that I AM much healthier here than I was in Dublin.
Now, looking back, I see that in Dublin the annual ratio was, to be generous, about 85/15.
For a day or two, I lay there and sat in a sort of awkward silence with this realisation. Not interrogating it, not journalling or whatever. Just kind of sizing it up a little. But slowly it started to feel like a blessing, this knowledge. After all, knowledge is power.
For the last 10 years, time and my body has felt like this huge mystery. I was always aiming for 100% functioning (being a bit of an ambitious girlie.)
And when that became clearly impossible, I was delusional enough to expect a solid 80 or 70% health. This delusion made life a stumble in the dark. It was always somehow a shock when I spent a season in bed. I was never prepared. My life was somehow not fully built for it.
When I realised that at my best I am sick a little over half the time, my first feeling was terror.
What the fuck was I doing?
It was a fluke that I’d survived this long.
How the fuck am I supposed to support myself?
How the fuck am I supposed to write, to film, to have friends, to forge some sort of career, to be partner, to be a niece and daughter, also oh my god the climate is falling apart and I have to do more about that- and THIS FUCKING DISEASE IS LIKE QUICKSAND AND THE MORE I TRY TO FIT INTO MY 50 PERCENT THE QUICKER IT WILL SHRINK TO 40 AND 30 AAGHHHHHHH.
but then.
*
but then there were thoughts after that.
I guess when you numb yourself from your fear, with overworking, with tv, with booze, with whatever you’ve got- you stop the progression of thoughts at the fear. You never get past it, to that other place.
This week as I envision my life going forward, I’ve been feeling curious about wheelchairs. Hear me out. If I am going to be unable to walk to the end of my street for 60% of my life, that’s okay. That’s the body I’ve been given.
Or maybe that’s not okay.
Maybe it’s my job to make it okay. And I’m not making it okay.
Because I am only looking after 40% of my life, 40% of who I am. And I am abandoning the 60%, a glorious, beautiful, perfect 60%, because I am ashamed to look at her. I am ashamed to be her.
If I was looking after the 60%, if I was dreaming dreams for her, and taking care of HER joy, HER dignity, then I would wonder why not being able to walk to the end of the street has been holding her back for a decade.
What if she had to tools she needs to leave the house, to see the sky, to move through the city? What if she had the humility and vulnerability to ask for help?
When I look back on these past months with fresh eyes I don’t feel regret for how unwell I’ve been because that’s life, that’s the deal. I was born fortunate in almost every way. This is my thing that I get to grow from. This is my thing that gets to make me understand how fragile and beautiful we humans are.
But what I am realising is that I could have seen the christmas lights, the parades, I could have been out in the world more with my beloved partner and the lovely new friends who wanted to show me their city, if I had known *how to be* that 60%.
If being “okay” looks like being as far away from her as possible, then I will spend 60% of my life insisting, like an apology “*but it’s okay” “but it’s okay”.*
I will have to say those worlds, like a broken record, because I have let everyone believe, myself most of all, that how I exist in this moments is nowhere near okay.
If I am “sick” more than I am “well”, then my entire idea of myself is false. It is built on shakey and ableist ideals. It's hard to admit that but it's true. And the hard truth is that when we talk about internalised homophobia, internalised ableism, internalised misogyny- we talk about them as if they are less evil or deplorable things, because they are aimed inwards. But that's not true. I am not serving myself with my delusions and I am not serving my community. Although, perplexingly, sometimes it's my community that I feel like I'm lying for.
*
The wheelchair is not the answer to all of this. I am at the beginning of a long and nuanced uncovering. A journey to real fucking acceptance. But as an idea, it's a big deal insofar as it *actually occured to me*. My mind, knowing the truth of my situation, provided me with a solution. An aid.
Currently, I live in a city that is basically entirely stairs and hills. But what if next autumn, I lived somewhere not too far from here, a flat place with long wide esplanades and warm spring evenings? What if I replaced the 60% of time I cannot walk to the end of my street- or even down the stairs to my front door- with a gentler type of slowness? Allowing the people I love to carry me into the night.
Vulnerability is accessibility.
Stomping around a city is wonderful, one feels mysterious, a vagabond. But couldn't I learn a whole new beauty, the wonder of a city made accessible by mutual care, by interdependence?
As always, though, that voice comes into my head. It's the voice of people who won't like this. They love me and they want to see me well. They love to see me well. I've been exaggerating the 40%, the 20%, the 10% for them for years. They won't understand why I'm using a wheelchair when they think of me as someone who dances.
To which I will have to explain that the wheelchair isn't for the person who they see dancing, it's for the person they don't see at all.
I do not want to be the missing girl, the absent girl. I want to be the empowered, dynamic, courageous disabled girl.
Not healthy 40% of the time and sick 60%. But disabled, 100% of the time.
Imperfectly human 100% of the time.
Deserving of access to the world, deserving of my own attention, 100% of the damn time.
I don't want to be here, in bed for my sixth consecutive week, my delusions crumbling, insisting “but it's okay” “but it's okay”.
I want to actually be okay. I want to be more than okay.
I want to be lying here in truth. For the truth sets us free.
I want to be engaged, fully, in this fucked up, beautiful, brutal, miraculous life.
Ps.
The quote in the image is from the book “the body is not an apology" by Sonya Renee Taylor. She had been helping me so much lately and you'll be hearing me reference her a lot. The audiobook is available on Spotify.
wow. I’m going to need to read this again! once again articulating things I’ve never had the words for or been able to think about, but really needed to hear. Thank you so much for this <3
Thank you for sharing your difficult realisation! Truth is the best starting point, but it's so hard to attain sometimes. I hope you find the tools to be truly okay.