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Disability and Love

Recently I was talking with some women who have chronic health issues and though our health problems manifest differently, we all spoke of having similar insecurities around talking too often or too openly about our troubles. These insecurities come in many different flavours; we the chronically unhealthy are afraid of being perceived of as whingy, boring, pitiable, crazy, energy vampires… the list goes on. Because of these fears, we are constantly engaging in a juggling act between our inner turmoil and our outward appearance – from one minute to the next, we are weighing up whether or not we should speak up about our struggles.

Personally, for every one time I decide to talk about my experiences with chronic pain, mental illness and disability, there are twenty times I keep quiet and hide how I’m feeling so that people won’t tire of me. I often challenge myself to speak publicly of my struggles because I know that when others do the same, it makes me feel less alone and better about myself and I believe this encourages compassion and connection. I have seen the evidence of this because every time I speak candidly of my problems, I will be the recipient of a multitude of messages from others who are going through their own trials and who are grateful for my honesty. Conversely, I know that if I speak of my problems a little too often, people will experience compassion fatigue and start tuning out, unfollowing me on Facebook and even resenting me. This is not paranoia, this is the lived reality of many who have walked the chronic condition walk and we have all experienced the exasperation of someone who is sick of our complaints. Even if that someone is simply ourselves.

Recently a friend sat on my couch drinking tea and, through tears, she spoke of her struggles with chronic pain. She confessed to frequently choosing to make the decision to smile through her suffering when in the company of others because she didn’t want to lose their love. She said she felt that was probably a bit of a dark and bleak outlook but I told her that I do the exact same thing and do not feel any shame for sometimes choosing to conceal my misery. Why? Because, to some degree, I am in pain almost all of the time but I don’t always want to talk about it, nor be viewed as someone to be pitied. Because sometimes I like to pretend, just for a while, that I am able bodied and as capable as I’d like to be. Because often I am miserable and happy in the exact same moment.

But most of all… because I need love.

We need love. Humans are social animals and love gives us an evolutionary advantage – love forges the bonds that incentivise us to look out for one another. Within a capitalistic and individualistic society, we create and revere a mythology of the self-sufficient and self-made person but the moment you examine that idea, it disintegrates like the illusion it is. No man is an island, this is so obvious that it’s cliché and yet we forget it is true.

My disability makes me acutely aware of the interdependency of humans and, well, all life on this planet. I have many needs; food, shelter, medicine, art, fun… and since I don’t qualify for any disability benefits in this country I am not a citizen of, all my needs are paid for by people who love me. Learning to be comfortable and at peace with this fact of my life is an ongoing process and it is still easy for me to fall into a spiral of shame about the perceptions I sometimes hold of myself as a worthless bludger. I counter this negative self-image with evidence to the contrary – to those that support me, in return I offer the things that I can, housework, food, adventures, sex, art, comedy, connection, love. Perhaps my acute knowledge of my own need has made me particularly talented at the last two, like they are skills I have honed out of necessity. If I love you well, you will love me well and then we can really take care of each other. Not co-dependent but interdependent.

Except… sometimes it feels imbalanced. Chronic pain and health concerns often preoccupy me and sometimes leave me feeling so deeply frustrated, depressed and miserable that the offerings I make in exchange for love seem lesser, stunted as they can be by the exhaustion and bitterness I sometimes feel. It’s hard being in chronic pain and I’m harder to love when I am in chronic pain. When someone you love goes through a personal tragedy, it is easy to support them because you know at some point there will be a light at the end of the tunnel, that they will most likely be better someday. With chronic health problems, there is not necessarily a point where the person gets better and things get easier (though certainly we develop the most incredible coping strategies!) So much of living with chronic pain is facing the same problems day in day out with no necessary end in sight. This is exhausting and also incredibly tedious. It tests all but the strongest of bonds.

This is not to say I am unlovable. In fact, I am blessed with a whole lot of love in my life and like I said I work hard to earn and sustain that love. However, only a few of my truly closest people get exposed to the complete truth of me – that sometimes loving me is a lot of work. I cry, a lot. I hurt, a lot. I feel, a lot. For the last couple of years, I’ve battled suicidal ideation and pretty serious mental health problems as a direct result of my physical health struggles. Often, I am insecure. Often I am lost. Often, I am exhausted. Sometimes loving me is a lot of work.

But, I repeat, I strive to make it worthwhile and I have been told it is. And lately I believe it. Lately I can see that my life experiences have given me the ability to throw myself into joy, when I receive it, with the wild abandon of someone who doesn’t take joy for granted. When I feel freedom I feel it with an exuberance and intensity that I believe is infectious. Living on the periphery of society has the incredible effect of making me less concerned with abiding by its rules, rules which I have forgotten or never learned in the first place. My own struggles have given me a deep supply of compassion for the ways other people can struggle and I believe this has made me into an open minded and caring person. Finally, I love with the intense gratitude of someone who knows exactly what a gift of time, energy and vulnerability it is. I do not take love for granted.

Sometimes when friends read the things I write online, they exclaim to me that they had no idea about my struggles. They tell me, with kindness and generosity that makes me adore them, that I do not have to hide it from them but the honest truth is… I do. Sometimes I do. And I want to. See, the thing is, if I complained to you whenever I hurt, I’d be a cracked record that you’d soon tire of listening to. This is not your fault, or mine, this is just the truth. Chronic health problems are boring, tedious and exhausting. If I showed you how I’m really feeling all of the time, if I let you know every moment when I am weakened, you wouldn’t want to be around me. And that’s fair because you need energy to fight your own battles. My struggles might be greater than some able bodied people, but that is, to some degree, something I have to face on my own. This is the juggling act we all have to do between external connection/interdependence and independence/emotional resilience.

Recently, a new love came into my life and as I came to love and trust him deeply, I allowed him to see the truth of me. We loved one another passionately but witnessing my truth was too much for him to sit with and so, one night, to diffuse his own discomfort, he used my greatest vulnerabilities as a weapon. In anger, he thoroughly shamed me for the ways in which I depend on other people both financially and emotionally. His words were vicious and personal in ways that I am not comfortable writing about publicly and they continued in smaller doses over the next several months. These words had me feeling small and pathetic, precise as they were in their intent to wound me. I was looking at myself through his eyes and what I saw was a parasite. Over time, I overcame the deep feelings of humiliation and shame by realising that though there was some truth in his words because he knew me well, mostly they said more about his internal landscape than mine. Having done the work to overcome that hurt and having extracted myself (with a great deal of sadness and heartache) from that relationship, I am now feeling stronger than I have in a very long time. But it wasn’t easy.

What got me out of that dark place was love. Love from my friends, family and other partners but most importantly, love from myself. In order to survive one of the moments in my life when I was most vulnerable, when I saw my very existence hanging by a tenuous thread as my suicidal ideation reached an unbearable pitch, I had to take myself on a crash course in self compassion and learn to love myself. I talked endlessly to people who suffered from a multitude of health struggles and was struck by the similarities of our experiences and as my heart expanded with compassion for others, so too it grew for myself. I got counselling from a lovely therapist who spoke my language. I went on SNRIs to cope with the clinical depression I realised I was struggling with. I sought wisdom in the written words of others and my bibles were “Daring Greatly” by Brené Brown, “Option B” by Sheryl Sandberg and Adam Grant, “How to be Sick” by Toni Bernhard and perhaps most influential of all, I am finding myself being deeply affected and influenced by the words on compassion, suffering and kindness from Tibetan Buddhist, Pema Chödrön.

“Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others. Compassion becomes real when we recognize our shared humanity.”

― Pema Chödrön, The Places That Scare You: A Guide to Fearlessness in Difficult Times

I stopped wanting to die when I started to believe I am a creature that is worthy of love, not in despite of my struggles but because of them. Because of the ways they make me the person I am today. I stopped wanting to die when I stopped feeling like a parasite and truly embraced the beliefs I’ve always held but never applied to myself; humans are social animals. The very foundations of our evolution as a species have been innovation, intelligence, diversity and in my opinion most importantly, interdependence. That’s why ants dominate underground and that’s why we dominate on land. None of us exist without support from others. None of us. None. Though I might not have the normal symbols of status and power to offer loved ones – money, a career, regular “achievements”, my offerings are, nonetheless, precious to the people who know me and who love me.

Because I am not a parasite. Chronically ill and disabled people are not parasites. We are in configurations of mutualistic symbiosis with those we love and we have much to offer the rest of the world too. Though the things we offer might be quieter, less immediately obvious, they are there and to the ones who adore us, we are irreplaceable.

So yes, sometimes loving me means extra work because I have a body that is prone to failing and that means I have to work harder to inhabit my flesh. But my capacity for giving love is momentous and now, as I learn what it truly means to love myself, I know I am worth the work.

Heavy

Deciding to live is not the same as wanting to live. This depression is thick and heavy, I feel immobilised. I understand that there are still good things and that there is still hope but that only sits in the part of my brain that deals with concepts, nothing feels good and I guess feelings are the stuff of motivation.

I had a moment of feeling good the other day. The helplessness had become unbearable and so I worked on my website for an hour. It felt… good. Yeah. Good. Because there I was, there was the person that I love to be.  I am so capable of the things I love to do, the stuff of my art, the thinking with my arms. How do I explain that I think with my arms? How do I explain how much it breaks my heart, every single day, to struggle to simply hold them up?

I know I sound like a broken record. I know I am wallowing in self-pity, tortured by the person stuck inside my crippled body. I know there are people who get on with things, no matter what and I fear I am not one of those people. I’m trying. God, I’m trying. I diligently attend my therapy, I try to make myself do things that will be good for me but without my arms to think with, it all feels like a shitty substitute for the life I want and it’s hard to muster up the positivity to feel like there is a point to this. I’m supposed to accept, to adapt, to move forward… and maybe maybe maybe I could actually do that if I knew where I was going but I’m still waiting for the big unknown of surgery.

And it’s two days later and I am still paying for that thinking with my arms for an hour. My body doesn’t allow for much of that anymore. Yesterday, my battle for the entire day was just continuing to sit up because my head felt too heavy and my arms were enormous weights pulling on my neck, stretching what can’t be stretched because it is trapped in spaces that are too small. Nerve pain is like when you lower your body into a bath that is far too hot, you just want to get out get out get out get out get out get out get out but you can’t you can’t you can’t you can’t can’t. You can’t.

I went on holiday recently, two weeks in New York and my body demanded my attention the whole time. I understood then that there really is no escape from the prison of my flesh. It was devastating and lonely. Crying on trains in New York was good though because nobody even cares. Why can’t the world be more like that? Why can’t we just cry when we’re in pain? Why do I put so much effort into concealing how I feel so that people won’t reject me? Is pretending to be ok a prerequisite of love? Life is hard and hurts and why do I feel so much fucking shame for feeling so weakened?

Fuck.

I’ve not been okay for a while now but there have been good days among that. I’m not feeling those good days anymore. I’m just waiting. Waiting for a medical system that is slow, indifferent, expensive and has almost entirely failed me so far. Waiting for the day when I have muscles and bones cut from one side of me. Then the six months of healing. Then, best case scenario, I get muscles and bones removed from my other side and spend another six months healing. And a year later, if I’m really lucky, I might be a little better.

See this is all I can reasonably hope for, is that I might be a little less crippled, or at the very least, that I don’t keep getting worse. Best case scenario, I can be a little better. But I’ve already watched my life grow smaller over the last seven years and I’m so tired and so bitter. I hate watching people do what they love, I see their freedom and it makes me feel so sick with jealousy. And I hate them for not knowing how free they are. And I hate myself for becoming this. I feel like I’m getting old and ugly. I guess I should be in my life, I guess I should be using what I do have and being grateful.

But I’m just not. I’m trying so hard to be. But sometimes the battle just to remain sitting upright, or to not cry in pain when I’m socialising because I want people to still love me and not grow tired of the tedium of my existence… that just depletes me of my mental and emotional energy. I’m so low on motivation. I am afraid that the smaller my life becomes, the harder things become, the less I will have to offer. I feel distant and disconnected. I fear becoming unlovable.

Talking to other disabled people helps sometimes. They understand. They know what a battle just getting through a day is. But nothing seems to stick. Deciding to live is not the same as wanting to live. I’m not ok but I really don’t know what to do about that. I’m doing things, I’m getting therapy, I’m taking on projects but everything hurts and I’m struggling to see the point.

I’m trying. I’m living for him but struggling to want to for me. I guess I still feel some hope but I don’t have anything like faith. Inside my head I observe myself screaming “help” but what the fuck does that even mean.

Shame is Boring

Recently I started making my own little youtube videos and though I’m still feeling awkward as I learn to navigate a new medium, I am finding it to be a very exciting, raw and direct means of communication and self expression. I feel tremendously excited but also incredibly vulnerable, as I allow my imperfections and awkwardness to be seen.

But I am proud of this video particularly.

Cities

Something past midnight, rural Victoria. Fog illuminated by headlights and very little else but for the painted lines of the road falling towards us. At some point the grey, yellow, pinkish murk melts away to a deep black dotted with artificial lights like carefully arranged fireflies. Then suddenly the city. A million lights that tremble in the autumn chill. Ephemeral phenomena. All of it. Cities are so fucking beautiful when you remember that in the history of existence, their appearance is so sudden and so temporary. These monolithic beasts of glass, steel and concrete reveal themselves for what they are… fragile and fleeting. Shimmering dots of light, like the glow of stars that died a hundred million years ago.

in and out

The rules state that pain must be internal. Like blood, milk, shit, piss, cum, tears, farts, ugly laughs, dirty sex, pubic hair… We are horrified by anything that highlights the truth of us as vulnerable, organic, meaty, stinking flesh. We love fruit when it is ripe and are revolted when it rots. We are tormented by taps that leak.

Those who expose the truth of us too freely are labelled impolite or scary or dangerous or insane. They are shunned, they are punished. If we don’t stone them to death, we laugh, we gossip or slowly, cautiously back away.

There are so many things we have all silently agreed not to talk about. Don’t talk about the things you want the most. Don’t talk about the things that really hurt. Don’t tell us how you really like to fuck. Don’t tell us how scared you really are. Don’t be too angry. Don’t be too much. Don’t.

The veneer of civilisation is thin and tenuous. We guard it out of necessity, it’s a useful structure, it’s a good thing that we’re not always raping and murdering each other. But within our constructed comfort, we become so fearful and feeble. We forget the flexible pragmatism of social structures and mistake them for inviolable law. We make Gods and use too much antibacterial hand wash and have too many four-wheel-drives in the city.

It’s claustrophobic. It’s suffocating. It makes deviants of us all and when we don’t fit in for our sex, our skin colour, our poor health, our pain… the feeling of isolation is devastating because we are social creatures who long to be loved. We fear that if we show the things we truly are, we will be shunned. But then we are alone and our loneliness accelerates our rot.

I hate it. I hate the artificial walls we thoughtlessly and religiously maintain. I grow all the more determined to smash them and this involves a process of directly observing myself and then attempting to communicate those observations. I try to catch myself when I engage in the act of self-censorship, I ask myself to be less fearful.

So tonight I’m going to attack a personal taboo that I never talk about publicly. Today I received a blow I’m struggling to cope with. The specificities of it don’t matter in this particular piece of writing, what matters is that tonight I was screaming at somebody who probably loves me more than anybody in the world because I was furious at the world and furious at him because sometimes he has been my only reason for living and today I hated him for that. For keeping me alive. For not letting me give up. For being my fucking hero.

I am not proud. I am whatever is the opposite. Ah, ashamed. I am ashamed. As I should be. My pain is not his fault. He tried to help me and I bit him.

He went to bed and I didn’t know what to do with myself. I wanted to paint but could not. I wanted to leave the house but my arms were throbbing in too much pain to drive. And though I was feeling self-destructive, I wasn’t up for going walking in the night-time and inviting other people to do the job for me.

So… I have no idea why, but I filled the bathtub with my UHT, lactose free milk that for some reason I always feel a mild and undefined embarrassment for drinking. Then I sat in the bath, singlet and underpants still on and gently pressed my surgical knife into my thighs to make the most slender red lines. It wasn’t a violent act, it required barely any pressure whatsoever.

It calmed me. Just like it calmed me when I used to engage in the same activity (minus the milk) as a chronically ill teenager. It gave me that same sense of control and quiet and I was in awe of the beauty of red blood on white milk. The bathroom was perfumed by the odor of milk. I have never experienced a room full of the smell of milk before. That comforted me. I swirled the creamy liquid around and watched the water turn pink. My mind became empty, the way it used to do when I would paint. The way it did when I smashed those glasses. 

Even as I write this I am so aware of how it could scare and anger people. I am not keen to be perceived of as crazy because I do not truly believe I am. What I think I am is someone who, like many people, is experiencing a lot of pain and sadness and is trying to find a way to effectively express, communicate and manage it. I’m not advocating for self-harm but… Fuck, maybe I am. Maybe tonight I can’t think of anything wrong with the pretty and harmless marks I made on myself.

I took photos on my phone. I think that they are beautiful and I love the raw immediacy of cell phone photography. I want to post them here and am going to. Even as I know that this thing which I think of as beautiful and vulnerable will be seen as… ugly, stupid, childish, scary. Even as I fear being feared and thought of as crazy and no longer taken seriously.

That’s ok. I have to be ok with that. I want to be brave. I want to be a person who isn’t afraid of the things that most people are.

The marks on my leg sting a little but a lot less than my arms hurt every day. I guess I am a mess. I guess maybe I need help but I also feel like… this isn’t a cry for help. This is… I don’t know what this is. I’m just tired of feeling trapped. My body is a cage I cannot escape because it is a tangible, physical thing but those invisible walls we construct, I just want to burn them to the ground and then stand in the ash and embers, screaming like Xena Warrior Princess. This is how I obtain a sense of power and that’s no small thing.

Procrastibation

Though I had been sexually active since I was 16, I didn’t learn how to orgasm until I was 22. So my first orgasm via masturbation wasn’t accidental, it was the result of a concerted effort, a campaign to cum that involved hours and months of exploration, wise advice from a sex worker friend and a savvy investment in an expensive vibrator from a female owned and operated toy store. I still remember how relieved I was to discover that I wasn’t broken, that I was completely capable of climax, I think I even cried.

That year, I spent a lot of time wanking in my tiny room in a student hostel overlooking Swanston Street. It was a joyous and unselfconscious experience that was dampened only slightly when one night I heard a bunch of drunk students making moaning sounds outside my room and then laughing uproariously, making me embarrassingly aware of how loud and obvious my activities had been. Orgasm was an exciting new discovery that I was a little bit obsessed with, sometimes I masturbated for hours, listening to music and focussing my attention on my clit. I was astounded by my own capacity for pleasure and it was entwined with my excitement about the new life I was starting in Melbourne.

Today I watched porn that I find morally objectionable while cumming distractedly. Procrastibation, the art of wanking to delay facing the mundane pain of reality. My mind wandered, I was feeling guilty and unattractive. This stuff is the junk food of sex. A little bit is comforting but too much is heavy lethargy.

I did house work. Necessary activities that give me little pleasure and also feel like an avoidance of more important things which is probably partially patriarchal smegma, something to do with domesticity and traditionally female activities being undervalued but it’s also because I just don’t want to be doing this. I want to be painting and working and able bodied and capable. I am avoiding things, I’m avoiding doing my physiotherapy that lately feels sort of futile because even though I know it helps, it doesn’t help a lot. The payoff feels like peanuts. Insulting and unfair.

I hate myself for that last bit. Life isn’t fair, bitch, get over it and get on with shit.

I bring towels in off the line outside because there is a forecast for wild weather. When I start folding them on my bed, I discover they are covered in tiny little winged insects. The bugs are coupled off in pairs that seem to be attached to one another by the rear end. Teensy little creatures fucking on our flannels, arse to arse, bound by the bum. I feel a stupid guilt for bringing them inside; perhaps now their mating is useless and pointless because how can such tiny creatures find their way back outside? Will they live and fuck and die in vain? Will I?

Stupid. Stupid useless thoughts, bitch. Guilt is boring. You’re being boring. The universe is brutally indifferent and existence is dumb luck. Just keep trying until you die and stop wasting your time agonising about wasted time.

I probably shouldn’t wank again today though. I really need to wash my hair.