Where do we go when better is not for us?

On recovery narratives and how they impact our lives

Apr 25, 2023

"In a world where perfection is lauded, where "fixing" is our goal, where we are all constantly trying to feel "better", falling apart together seems like respite, a practice of care."

I wrote this on my Instagram post more than a year ago when a dear friend sent me a cake with words I'd shared in a gathering on care - "Falling apart together". I wished then (as I do now) that care didn't just mean helping us get "better", but that instead we could create spaces for us to be ourselves and to fall apart together.

Let me dial back a bit and explain why I was (and have been) thinking about this idea of “better” and falling apart. Recently I remarked to friends that my journey with some form of therapy or the other began in 2010, and 13 years later, I am still in therapy. I don't particularly categorise this as a good or bad thing - but it is a reminder to me of the kind of work that is needed. It is a difficult task: showing up over and over, month after month. Sometimes when one feels "better", we take a small break, and other times we continue to show up and do the inner work.

Somewhere along the way, my relationship to my healing shifted. I remarked to my therapist recently that I was no longer sad or upset or ashamed I needed therapy; I was tired, however, of needing to do this work. She laughed and asked me why I felt so. I was mostly being flippant (her laugh was valid as I think she realised my exhaustion before I had vocalised it to her), but my response got me thinking. All around us we see these messages about how going to therapy is an important process of "fixing" our problems, of finding healing, of removing our bodies-minds from the fight-flight-freeze-fawn responses, and as a way of dealing with our difficulties, traumas, glitches, road bumps or whatever one may call them. Witnessing these narratives surfacing on social media and in my conversations with friends and others, got me thinking again about "better".

What does the word “better” mean? How does it manifest in our world when we think about health, about bodies-minds? About happiness or our work? About our personalities and even about our relationships?

Many disabled and chronically ill folk have written about recovery, healing, and the difficult journey they have with it. But my concerns around recovery were tied to how I perceive myself because of the narratives of recovery I encounter and its impacts on my healing journey. One of the shows I often re-watch is Elementary. In this iteration of Sherlock Holmes and his life, he struggles with drug use, and the show features his recovery or healing journey as a large part of his character arc. Recently, I encountered an episode where he articulates what he’s grappling with around his recovery. He says to Joan Watson:

“It’s the process of maintaining my sobriety. It’s repetitive. And it’s relentless. And above all, it’s tedious. When I left rehab, I accepted your influence. I committed to my recovery. And now two years in I found myself asking, is this it? My sobriety is simply a grind. It’s just this leaky faucet which requires constant maintenance. And in return offers only not to drip.
I used to imagine that a relapse would be the climax to some grand drama. Now I think that if I were to use drugs again, it would in fact be an anticlimax. It would be a surrender to the incessant drip, drip, drip of existence.”
Sherlock Holmes, Elementary

I loved this quote and immediately recorded it in a voice note on my phone for myself. He speaks and points to the exhaustion of the "better" narrative or the recovery arc we are all meant to have. Beyond the idea that healing is not linear and we will have good days and bad, what I am learning to see is the exhaustion of doing all this work every day, every week to — for the most part — only not worsen my illnesses. Like he says: the tap offers only to not drip.

Why do we love recovery narratives?

I was curious to learn more about our obsession, hmm maybe fascination is a better word, with recovery. Recovery, I discovered, has different origins, often reinforcing a linear path for a person. The preferred recovery narratives, especially around mental health, are largely located within ideas of resilience. These narratives have many consequences. In the paper ‘Resisting resilience and recovery narratives’, we see how resilience within recovery “places responsibility on individuals to activate and self-govern wellness”.

Another research paper that focused on resisting recovery narratives, especially within substance abuse concerns in rural areas, pointed out how the purpose of recovery narratives has changed over time, including who they don’t cater to:

“Although recovery is described as a unique, personal journey by early proponents of the recovery movement (Deegan, 1992), dominant recovery discourses value an ideal recovery identity that may not be available to people with substance use issues who experience physiological, psychological, social, economic, and/or legal issues resulting from the use of [narcotics or alcohol] particularly in rural areas with less access to treatment.”

Recovery arcs are common in literature, movies and art, where we see a clean trajectory of being able to control and inhabit a stable space of recovery. This isn’t true for all of us though. These stories of recovery have varied impacts on the lives of chronically ill and disabled people, who may not have a "better". Alongside pieces promoting resilience and recovery for chronically ill folks and those with mental health conditions, I discovered many pieces challenging the idea of recovery arcs. These pieces that argued against the recovery narrative, speaking of the many ways in which the narrative of recovery is reinforced for us, within friendships, families, patient-doctor relationships, embedded in our every interaction.

A.H. Reaume, a disabled writer and feminist, wrote about the violence of recovery narratives in her piece for Open Book. After her brain injury, she found herself waiting for that "moment" of recovery. Her piece explores our general fascination for a recovery arc in literature as well as our lives and how it impacts us.

She wrote about how recovery pans out in conversations with her friend:

"I tried to tell him that both things could be true. I could accept that I was disabled now and I could still work towards my recovery. But by not pinning my hopes on my body suddenly getting better – I gave myself space to live in the body I had. To make it my home. I told him that there was beauty in disabled lives and bodies. That I had to stop spending all my energy striving to get rid of disability and spend energy embracing it, too. Only he couldn’t understand my reasoning. My desire to exist within the tension and uncertainty of my slowly healing body wasn’t legible to him. And he wasn’t the only person in my life to feel this way."

Disability pride aside - which I've written a lot about - I found this tension she speaks of crucial to my own experience of healing or recovery. One of my prime concerns with health recovery narratives - whether it is mental health or physical health - is that I am faced with this expectation of getting "better". This is true for others’ expectations of me but also in line with my own expectations of myself. In fairness, it is understandable, I don't want to feel terrible on a daily basis and keep hoping for it to change. But living or relying on this hope is where the struggle within myself lies. For the most part, living in a place of many knots where the chances of “better” are sometimes slim, at best tentative and realistically not imaginable - the turmoil recovery narratives cause is too chaotic.

The roads of recovery (as offered by medical professionals or others) are numerous, while many of us continue to make decisions about which one to pursue and which to let go of. (I almost typed - which battles to fight and which to let go. I know I don’t mean literal battles but the language commonly used in the space of healing is one of “fighting battles” or “being warriors”. But I find it unhelpful to think of myself of being at constant war with my body-mind.)

The unknown paths in the healing journey are just that: unknown. "Better" can be a lifeboat, and it can also be that promise of somewhere else, somewhere in the future. All the while I lose my present self in the search for it. This is also how medical professionals often engage with us during appointments. Asking if the "better" has arrived. The answer lies somewhere between yes, probably and who knows.

The work of recovery

I don't know if I have any answers, but I find that there is a deep exhaustion in always striving to reach that “better”. Meanwhile, I am not investing time, effort and mind space to accept the now as it is, for what it is. Especially because, as Sherlock says, and as the entire show demonstrates, so much work, time and energy goes into maintaining ourselves. The perfectly balanced schedule of earning and rest; ensuring movement and mobility are part of the everyday; managing all those doctor appointments; attending therapy sessions every few weeks; the grief of seeing yourself dismissed or most often ignored over and over. It is tedious.

We of course have companions, friends, fellow healing journey travellers, but it doesn't make this work easier. I was telling a friend recently about the enthusiasm I had early on when I fell sick to find more answers. That enthusiasm has faded over time, but I am still here, trying to find the best way to support myself through it all.

I am reminded of this quote which is in the opening page of Esme Wang's The Collected Schizophrenias:

"Recovery [from schizophrenia], almost never complete, runs the gamut from a level tolerable to society to one that may not require permanent hospitalization but in fact does not allow even the semblance of normal life. More than any symptom, the defining characteristic of the illness is the profound feeling of incomprehensibility and inaccessibility that sufferers provoke in other people."
—Sylvia Nasar, A Beautiful Mind

I don't live with Schizophrenia but this quote resonated with me, reminding me of the dissonance I feel when I see recovery touted as a destination where "if you work hard, you will reach it". This is contrary to the reality of our lived experience of working on our bodies-minds and finding a sustainable middle ground for ourselves where acceptance, exhaustion, tediousness, joy, imperfection, brokenness and hope all reside.

In a moment of serendipity, recently on a flight I was listening to Pádraig Ó Tuama's podcast, Poetry Unbound episode, where he speaks about his illness through his 20s when he had a prolonged period of fatigue. I hadn't known this about him who I read and listen to a lot. In this episode he spoke about how the illness itself is fatiguing, and then we are “fatigued by the fatigue”. But also that there is an unspoken and sometimes vehemently spoken pressure from others that "you must really want to get better". He says, though, that sometimes we are too tired to want to get better and that we just need to get through the day. He says, “One of the things I needed to learn was the twin realities of changing my expectations and finding ways in which art could help me.”

In my case, I don't yet have that balance, but poetry and reading sure help me too. So does the understanding that being exhausted from the maintenance of my body-mind is alright, and not necessarily something to change. As does recognising and honouring this exhaustion before I lose all of me in the search for “better”; all the while forgetting to embrace the "now".

Since much of healing is done in community, especially because embarking on this solo journey can be very tiresome, it reminds me of another line in Elementary. One of the characters says: “Recovery is a team sport” and which is why they (in the show) sit across strangers in church basements and rec centres and bear their souls: because we need each other’s help.

So then, knowing our urges to get clean recovery arcs or a recovery arc at all, can we find room for all of us to be accepting of our present moments, without the pressure to change them? Without the urge to make them "better"?

What are your thoughts on "better", "recovery" and anything else that comes up for you on reading this. I would love to hear <3

Until next time with lots of love and magic,

Nids

Poetry for you (and me)

A Good Story
by Ada Limon

Some days dishes piled in the sink, books littering the coffee table
are harder than others. Today, my head is packed with cockroaches.

dizziness, and everywhere it hurts. Venom in the jaw, behind the eyes,
between the blades. Still, the dog is snoring on my right, the cat, on my left.

Outside, all those redbuds are just getting good. I tell a friend, The body
is so body. And she nods. I used to like the darkest stories, the bleak

snippets someone would toss out about just how bad it could get.
My stepfather told me a story about when he lived on the streets as a kid,

how he’d, some nights, sleep under the grill at a fast food restaurant until
both he and his buddy got fired. I used to like that story for some reason.

something in me that believed in overcoming But right now all want
is a Story about human kindness, the way once, when I couldn't stop

crying because I was fifteen and heartbroken, he came in and made
me eat a small pizza hed cut up into tiny bites until the tears stopped.

Maybe I was just hungry, I said, And he nodded, holding out the last pice.

For a new Beginning
by John O'Donohue

In out-of-the-way places of the heart.
Where your thoughts never think to wander,
This beginning has been quietly forming.

Waiting until you were ready to emerge.
For a long time it has watched your desire.
Feeling the emptiness growing inside you
Noticing how you willed yourself on
Still unable to leave what you had outgrown.

It watched you play with the seduction of safety
And the grey promises that sameness whispered
Heard the waves of turmoil rise and relent
Wondered would you always live like this.

Then the delight, when your courage kindled
And out you stepped onto new ground,
Your eyes young again with energy and dream,
A path of plenitude opening before you.

Though your destination is not yet clear
You can trust the promise of this opening,
Unfurl yourself into the grace of beginning
That is at one with your life's desire.

Awaken your spirit to adventure;
Hold nothing back, learn to find ease in risk;
Soon you will be home in a new rhythm
For your soul senses the world that awaits you.