Tonight

Tonight I am wallowing in a psychological rut. Letting go is so much easier when you’re moving forward, it’s this reality of my physicality that forces me to be still until the pain decreases.

If the pain decreases. God it takes so long and the surgery has caused new issues that at least are not the same issues but I’m forced once again to sit still. So I read Buddhist philosophy and meditate and tell myself I’m teaching myself to sit more comfortably with the unavoidable reality of suffering and sometimes I feel so proud of my resilience, of how I can weather the most violent and painful internal storms. Sometimes I feel so wise, so connected, so grateful, so much love and so I work to keep my focus on the beauty that is a purring cat on my lap, a storm of autumn leaves on the road, my mother humming in the kitchen, a lover telling me I am beautiful.

And I am getting better at sitting in this stillness, there are moments when I feel the reality of my body and accept it with grace and calm. There are more of those moments now as I have begun to let go of needing to meet any standards but for the ones that are realistic and kind. Everything is easier now that I am kind to myself.

Easier but not easy. Sometimes I look at my life and see how much of it has been spent from a place of enforced stillness, watching as everything moves and grows and shifts around me and I am forced to wait while my body ages and my face starts to sag. I no longer want to dwell in the bitter taste of envy when I behold the able-bodied who know not the privilege of doing without thought, I no longer want to feel as if I might die when I watch other people paint or play music or do whatever they love with unnoticed freedom. But when months go by and I am unable to pick up a pencil or brush without unworkable pain… well, to pretend that isn’t devastating would be a lie. It’s grief, it still is, maybe it always will be.

There is that temptation to fall into that grief and succumb to an overwhelming hopelessness like I once would have. I can see why I wanted to go there in the past, I can see the horrifying way in which giving up would have been a relief. This existing in my crippled and chronically painful body is hard work, it requires constant vigilance, such intense internal work, such a deep and brave and thorough exploration of myself, my worth. It requires the ability to stare into the cold face of reality and unrealisable dreams, it requires the ability to resolve to keep trying and loving and hoping no matter what. It requires a dogged determination to perceive the beauty and tenderness in whatever I might face, no matter how utterly cold and cruel it all seems.

It requires a deep humbleness, an uncompromising kindness and a gentler hold on my own ego. It requires the careful cultivation of people who can hold space with me through light and dark, sickness and health. Compassion has become non-negotiable.

Tonight I am wallowing in a psychological rut. Tonight I may cry for an hour and feel entirely bereft and alone. Tonight I might not be ok. Tomorrow I may step outside and notice something overwhelmingly beautiful such as the drama of sunlit storm clouds. Tomorrow I may read a book that takes me out of myself. Tomorrow I might have a drink with friends who make me feel loved and content. It’s light and dark just every day, it’s pain and joy just every day.  The magical highs, the tedious lows, much of it is unavoidable and inevitable so I might as well learn what I can from it all. I hope, no matter what, that I can learn to navigate the entire spectrum of experience with equilibrium, curiosity and dignity.

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My Website

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Hey guess what? Over the last couple of months, I’ve been able to slowly update my website, after it lying dormant since 2012, as I slowly get somewhat more able-bodied post-surgery. I’m not finished yet, there’s a couple of things yet to come but it’s mostly there! I’ve tried to combine many facets of myself there and this includes the overlaps between art, comedy and smut. So it’s VERY much not safe for work, there’s a LOT of nudity and sexually themed art, you have been warned.

It is such a damn good feeling to be improving enough that I can actually start building my profile as an artist again. I have to work very slowly but I’m able to do it and so putting together this website has been so good for my goddamn heart.

Anyway, blah blah blah, check out my stuff at jngaio.com if you’re so inclined and you can also follow me on Instagram. Viewable on phones but significantly better on a desktop.

Good News

(This is cross-posted from my Instagram where I have been most active lately. It’s not a poetically written post but it contains happy news about my thoracic outlet syndrome and I think this blog needs a bit of that.)

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Succinctness will never be my talent but my health stuff is going amazingly well and so I wanted to gush about that.

Before I got surgery for my thoracic outlet syndrome, I was feeling trapped in my body. After years of incorrect diagnoses, shitty experiences within the medical system and my disability and pain increasing with every year, I was feeling utterly alone, utterly dejected.

Four months after surgery (where the surgeons found I had the worst compression they had seen) and I’m actually starting to see real, tangible progress from the physiotherapy I’m doing. I’ve started lifting a half kilo weight and more amazing than that, two months ago I started doing a gentle rowing motion with a very gentle theraband, this was a HUGE deal because before I had surgery, even after a year of physiotherapy, I couldn’t do the row without pain. I simply wasn’t able to do it. But I’ve been doing it for two months now and a couple of weeks ago, I graduated to a tougher theraband, at which point I got tearful in front of my physiotherapist. She apologised for how long and slow this process is to which I responded “no, the thing you have to understand is to me, this is nothing short of a miracle. Before surgery, the idea of being able to do this exercise felt like dreaming too big” and it did… it seemed as out of reach as the idea of me walking on Mars. But it’s happening, twice a day I do twenty rows and it’s hard, my body has a lot of shit that needs correction… but it’s happening! It’s really happening! I’m improving!

Yesterday I drove almost two hours and I was only in mild pain afterwards. Today, I painted for almost three hours and though that was definitely pushing it too far and I need to not make that a habit just yet, for the first time in perhaps seven years, I wasn’t a broken wreck afterwards.

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Here’s a portrait I did of an Instagram friend in 3 hours. Ok, I was actually pretty sore the next day but I’m still excited about being able to paint for longer than I could before surgery

I will always have thoracic outlet syndrome, I will always need to keep on top of my physio and practice management strategies. But that’s ok because for the first time in such a long time, my hard work and discipline pays off! Do you know how much easier it is to keep pushing onwards when your hard work gets results? Do you know how much easier it is to look after your body when it isn’t in pain all the time? Do you know how much easier it is to get through the day when you can take a quick drive to the shops without it hurting? My brain feels so much clearer and my heart is opening with the joy of it all.

I am acutely aware of how lucky I am that the surgery for this poorly understood and rare condition actually worked for me. I am, in honesty, still in shock and every day, when I realise how much easier life is for the able bodied, my heart goes out to everyone who struggles against impossible, invisible enemies, myself included. I never believed I could be this lucky. Perhaps in a year’s time, I’ll be using a rowing machine at the gym. Perhaps I’ll be painting every day. But even now… I’m better than I had thought I could possible be when I lost every shred of hope last year. I am so lucky, I am so incredibly lucky.

(P.S this post is public because when I desperately needed TOS success stories, I couldn’t find any. Down the track I would like to make a website about it or something but currently I’m just focusing on my own healing. My second surgery is booked for April 10, I am still pretty nervous because it’s major surgery but I am not terrified like I was the first time.)

Suicide and Love

(Trigger warning for discussion of suicide and disability, this is actually a positive post but it’s still very intensely emotional stuff.)

Earlier this year, I stood on the edge of a train platform in New York City and nearly jumped. I had been struggling with suicidal ideation for the last two years, my chronic pain had pushed my brain into a clinical depression that was almost relentless and I had experienced several major mental breakdowns, the accumulation of which, coupled with a traumatic event, had left me feeling utterly useless and hopeless and so I stood on a train platform and contemplated jumping. In fact, the only thing that stopped me was the thought of Wes, one of my partners, having to pay a fortune to have my mangled body shipped back home. Sometimes I am still blindsided by the horror, the sickening realisation of what I nearly did.

Lately, my life is really incredible. My arm has been slowly improving and I’m getting back the things I thought I was losing forever, my ability to paint and write and drive and just… just live with some freedom of movement, without my body feeling like a cage that is shrinking smaller, smaller, smaller. I had lost all hope that I could ever be so lucky and so I feel my luck with an intense gratitude and a deep, heartbroken sadness and compassion for everyone who is currently lost, and scared, and hurting and may never be as lucky as I am.

I am also intensely aware that I don’t want anyone to think my life is only better now because my arm is getting better and frankly, that isn’t true. My life actually started getting better before the surgery, it started getting better on the night when, back from New York and in an abject, miserable, broken state, body trembling and eyes red from crying for days, I screamed at Wes to help me, to please help me, please why wouldn’t anyone help me.

He called suicide hotlines and they were not helpful (this is not a criticism of that resource, it’s just the advice that was offered was… ok it wasn’t useful so maybe this is a criticism?) and so instead he called my mother and with her advice and the help of some of my friends and lovers, Wes organised for me to go on suicide watch. For the next several weeks, I had somebody by my side every day and through that process, I realised how loved, how very loved I was. I realised how important love and community and kindness is and my life started getting better.

Then I started meditating, and reading books on shame and daring greatly and grief and finding Buddhism, and practising self-compassion and loving kindness and learning from the wisdom of an ancient philosophy that someone called “positive nihilism” which suits me well as it’s is all about love, connectedness and how to navigate the facts that suffering and change are unavoidable truths.

And I went on SNRI antidepressants as we came to realise that though my reasons for feeling unhappy were valid, nonetheless my health had pushed me into a clinical depression and my brain needed some assistance climbing out of that. And I was already getting therapy and that helped a little though not as much as the support of my friends and family because the mental health support system is overstretched and besides I was tired of the dehumanising process of being a problem to be fixed, that was in fact part of what was hurting me so badly.

And I went through loss, I had two important relationships fall apart at the exact same time and felt the ache and hurt and heartbreak and confusion that comes from conflict with those you love and then I practised self-compassion and honouring my heartbreak and sadness and letting myself move through all the stages of grief and anger and loss and letting go. I am still moving through those but the process of doing it with a great deal of compassion for myself is strengthening me further as heartbreak doesn’t have to harden me or destroy me, but instead can soften me to the pain of others. And as my compassion grew and therefore my sense of connectedness to others, my life started getting better.

And I started letting go of shame. I was shaming myself a little less for not earning money and struggling with mental health problems and I was valuing myself a little more for the contributions I was making in the world. And I realised my principals are entirely about kindness and that made me feel strengthened and driven. I decided I was going to be ferociously kind and I started to get more in touch with my anger (with unfortunate mishaps along the way because I’m still working through trauma and anger and it’s messy stuff) and I started to get more in touch with my pain. And my life started getting better.

Earlier this year, I stood on the edge of a train platform in New York City and nearly jumped. Sometimes I am still blindsided by the horror, the sickening realisation of what I nearly did. I saw oblivion and what I went through had the trauma of a near death experience. And now I look back, I can see that during that time, I felt utterly alone, utterly worthless and utterly helpless because I thought that my disability made me unworthy and meant I could not live a full life.

So though my life is definitely made -significantly- easier because of the surgery and the fact that I’m one of the lucky ones who might be able to get better, I want to reject the toxic notion that the only reason my life is better now is because I am starting to become more abled bodied, more “normal”. Yes, it’s true, I’m happier because I’m seeing that I can start to follow my biggest dreams again. Yes, I’m happier because life is fucking easier. This is true. But it’s not the only truth and not the only possibly positive outcome.

Because it may not have been the case. It was entirely possible that the surgery wouldn’t work and the thing I realised, before I went under the knife, was that even if my body didn’t improve, I could still live a good, full, rich life, it’s just I’d have to work a whole lot harder than most people and I would need to surround myself with gentle people who would not resent me for the things I could not do or be. In fact, I’m still disabled it’s just… less than I was.

So I really want to say this with as much emphasis as I possibly can… if you know someone who loudly complains about their pain, please think twice before you shame them for “whinging” because you don’t know what it feels like to be inside their skin. If you know someone who is engaging in acts of self-harm and suicidal ideation, please don’t dismiss them or get angry at them for the state they are in. It’s so hard to look straight at pain, it’s so hard to look at people who are suffering because the sheer existential horror of it scares us and so we’d rather look away in fear and disgust. But I need to say this with as much emphasis as I possibly can, the only reason that I am alive today is because of the people who didn’t walk away, didn’t angrily chastise me, who instead sat with me through my pain and reminded me that I could have joy. The only reason I am alive today is because of the people I gave love to and who loved me in return.

Let me say that again. The only reason that I am alive today is because of the people who didn’t walk away, didn’t angrily chastise me, who instead sat with me through my pain and reminded me that I could have joy. The only reason I am alive today is because of the people I gave love to and who loved me in return.

Disabled people and the chronically ill can have amazing lives, do amazing things, make the world richer, kinder, wiser. But so many of our struggles are invisible and so much greater than you may perhaps realise so please, as much as you can, strive to be patient and generous and kind and to realise that though someone might have more struggles than you, it doesn’t mean they can’t have brilliant, beautiful, valuable lives. Please, I implore you, behold the pain of others and of yourself with gentleness and kindness, not pity and anger.

My life started getting better when I started being kind to myself and surrounding myself in kindness. That was the thing that saved my life and made me want to stick around in this world for as long as I possibly can, love. Just love.