Lost Time

I’ve been trying to make up for lost time, haven’t I? I’ve been trying to play catch up in a race that is rigged by forces beyond my control and perhaps exists only in my head. A competition between myself and imaginary rivals with doubters and detractors watching from the sidelines. “I told you so” I cry triumphantly as I flip them the bird and take what’s mine. What is mine? The friends I never had in childhood? The high school I never graduated? The accolades I was never awarded? The bragging rights I never gave my parents? The income I never earned? The paintings I never painted?

Now that the surgeries where they cut muscles and removed bones were successful, I paint joyously and gratefully, I never thought I could have this back. But the joy turns to intensity and the intensity turns to anxiety. I paint furiously, forgetting I am still a cripple and pushing my body beyond its current capacity. I retreat guiltily, depressively as my body responds in pain and seized muscles. I fall into old habits of beating myself up for my failures in self-discipline and lack of wisdom and the inability to indulge my wild passion in more restrained measures.

I panic and sleep too much and eat too much sugar and ice cream and wonder how I’ll ever go Vegan and why the hell haven’t I managed to make myself meditate lately when I know it helps and why haven’t I gone for a walk and why haven’t I saved the Great Barrier Reef and now that I no longer have my disability as an excuse, what if I’m still useless, still nothing?

But my disability was never an excuse, simply an explanation and I’ve never been useless, never been nothing. I drag myself to a group meditation and spend the whole time feeling like I might start screaming from the panic attack I am silently experiencing. Yet, the facilitator speaks of compassion to our own emotions and of sitting with a gentle kindness with ourselves and though no words particularly stick with me this time, I find myself calmer at the end of the session. I start to notice what’s going on.

What’s going on is that I’m scared. Scared as my body heals that I will fuck it up and ruin all the hard work and money that has been invested into me. Scared as my body heals that maybe it’s too late to make a something of myself. Scared as my body heals that I will have nothing to offer. Scared as my body heals that I will lose the hard earned wisdom I gained from my chronic pain and disability. Scared as my body heals that I will hit a wall and still be disabled and lose the patient compassion I have had from loved ones.

It’s useful to put words to those fears because I can challenge them and realise that what they are about is that my life is in transition. A shift from one sort of existence to another but not a miracle cure sort of shift, rather a slow and ongoing changing without a knowledge of what the end destination might look like. Only now I have hope. And I guess maybe that’s what scares me most… I never want to lose hope again.

And so with these realisations, I hold myself in compassion because I’ve had these fears before, the first time I started to recover from a chronic health condition, only to fall into another. I realise the thing I need currently is not to suddenly fill my life with achievements and become obsessively caught up in my identity as an artist and the ways in which that can make me feel valuable and lovable but instead to remember the value of meditation, loving kindness, gentle compassion, human connection and a returned focus on self-care both physical and psychological.

This is not to say I am de-prioritising my artist practice, it is my passion and always will be but I need to bring these other aspects back into focus because I still have this disability and need to find sustainable ways to explore and work with my shifting capacities. I need to do this gently, kindly and I need to forgive myself when I stumble and struggle. This is better than before the surgery and for that I am grateful but this isn’t suddenly easy and I need to remember that and be kind.

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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.

That Cripple Girl

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“I just don’t want people to think of you as that cripple girl.”

A lover said to me as we lay in bed together, he was questioning why I regularly wrote on social media about my experiences with my thoracic outlet syndrome. Later in our relationship, he begun to accuse me of whingeing and playing victim when I expressed my anxieties about money, he was angry at me because I had achieved some big things with creative projects which to him proved that I was therefore capable of working, if only I was creative enough to come up with a solution, if only I stopped whining, if only I stopped acting helpless and started living in the real world like he did.

“You are just a piece of shit to me right now” he said and because he’d also been calling me the love of his life, I sat and I listened. At the time, his words hurt like hell because I thought he was right. I thought perhaps that I had earned the disgust burning in his eyes and I even felt a sick sort of gratitude towards him for “just saying what everyone is thinking” because secretly, I did believe that people must look at me and think that I am just weak-willed, attention seeking and whiny. I challenged myself to speak openly about my experiences with my disability in order to combat those fears and to decrease the isolation a person can feel when they experience chronic health issues but it didn’t mean I wasn’t afraid of being secretly judged. I was, in fact, really afraid and often still am. After all, I had had that exact experience in my childhood when I was chronically ill and my classmates would tell me that their parents said I was faking it. I’ve had doctors tell me there is nothing wrong with me. I’ve had a lot of people’s responses to my health problems make me wonder if I’m crazy.

Several months after I left that lover, realising that his behaviour was emotionally abusive while still struggling with the fact that part of me still believed his words, I got surgery on my right side. I had two scalene muscles in my neck cut and my top rib removed. The two surgeons who performed this procedure on me said it was the worst case they had seen. When I was told this in the hospital, I broke down in tears, along with my mother and husband who both held me and cried with me. After so many years without diagnosis, so many years of having an invisible disability, to have a specialist in my field tell me I was a worst case he had seen was actually incredibly validating and I will always have the scar to prove the reality of my experience to myself and to others.

The improvement was almost instantaneous and for several months after surgery, I was able to progress with my physiotherapy and was even able to start painting more and more. However, for the last month, my right shoulder has dropped and have been unable to do anything. This has been really scary and disheartening but tomorrow I see my physiotherapist, who has been away, and on Monday I see my surgeon so hopefully they can offer some answers and help me get back on track because I’m scheduled to be operated on my left side on April 10 and this has made me a little anxious about whether I’m making the right choice. I’m actually still reasonably sure I am because on my left side I have some signs of arterial compression which can be quite dangerous.

Despite the emotional turmoil of the last month, I have been struck by how resilient my mental health has been through this experience, compared to last year when I was suicidal and despairing. A few things have changed since last year; I started reaching out to people more for help when I am too sore to get things done myself, I’ve been meditating a lot, I’ve been reading lots on self-compassion and focusing on not shaming myself for doing what I need to be happy. The biggest part of that ability comes from one simple realisation:

I am that cripple girl.

My disability affects every aspect of my life, every decision, every night, every day. Though disability is not visible on the outside, though my face does not crinkle in pain with every movement I make, it is omnipresent in ways that someone who is able-bodied could simply never truly comprehend without living in the reality that is my body.

Over the last three weeks, I hadn’t been posting about how bad things were because I was afraid people would see me as whingeing. I had been so positive, so excited, so productive until just recently and I was afraid that people would be disappointed with me, exasperated with me for not just getting better after surgery. But for many disabled people, there simply aren’t easy answers because bodies are more complicated than we currently understand. Over the last month, I hadn’t been reaching out to my friends and family and talking about how I was scared, scared of how the surgery seemed to be causing new problems for me, scared about going under the knife again in April, sad and unhappy because I haven’t been able to do most anything while I’ve been having these problems.

But then I realised I had to call my friends, I had to start writing again, I had to start talking about my experiences because this is the reality of my disability. Because there are no straightforward answers. Because this is hard and I need support through it. Because this isn’t my fault. Because this could happen to anyone. And when I reached out to people, I was met with nothing but compassion.

Because I am that cripple girl, that’s just my reality. I’m also that artist girl, that queer girl, that kinky girl, that comedian girl, that kind girl, that weird girl, that short girl.

I was talking to my therapist the other day, a new one I started seeing to figure out why it’s taken me so long to work through the hurt done to me by that ex-lover. The conclusions we’ve come to is that my ex-lover triggered deeply held fears I’ve held about myself since childhood and my adult insecurities about being disabled. My therapist said that he believes that some able-bodied people struggle to sit with the reality of disability, because they can do things and the idea of not being able to simply do those things is horrifying for them. It’s easier for them to judge you rather than to sit in compassion with your experience. He described my ex’s response as emotionally lazy, he said that being disabled is hard enough work without expelling energy on people who are not kind, that disabled people in particular need to surround themselves with people who are thoughtful and compassionate.

Compassion is not the same as pity. Pity is “you poor, sad thing”, pity is looking down at a person and thinking you could never fall as low as them. Compassion, however, is standing face to face with someone as an equal and realising how easily their struggles could be your own. Or as Buddhist nun, Pema Chödrön put it:

“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 am that cripple girl. It’s simply a fact of my reality. It makes my life really hard in a lot of ways which I reserve the right to talk about, to emotionally struggle with and complain about. I am that cripple girl and sometimes being trapped in this body of mine is the stuff of existential horror. But that’s only one part of my life, one part of me. I am that cripple girl but if you think that makes me sad or pitiable, the only person that says anything about is you.

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.

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.