No Moral Here

Photo I took in 2017.

Did you know that overexplaining can be a symptom of trauma? When a person grows accustomed, over a long time, to being criticised and/or disregarded, they learn that if they just explain as much as they possibly can, perhaps, just perhaps, someone might at last listen. Truly listen. It doesn’t work though, instead people tune out if you talk too much.  

Did you know that oversharing can be a symptom of trauma? Profound loneliness breeds a need to be seen. Feeling monstrous creates a need to confess. It doesn’t work, though, because one day you realise you’ve exposed everything to everyone, not everyone should be trusted and your truth becomes weaponised. Then you become afraid of sharing anything at all.

Did you know that trauma is somatic? Even if you come to understand the why and how of something, as a dear friend once said to me “the body doesn’t speak English” and our nervous system is trained from childhood. Conventional wisdom says not to live in the past, mindfulness practices help us sit in the present, but what if the past planted something painful so deep inside you that sitting in the present can be a practice of sitting with a deep, aching and ancient feeling of loneliness?

Did you know that suicidal ideation can become a habit? If, for example, you’ve imagined ending your own life since the age of 11, these thoughts and desires create grooves in your brain so deep that you can’t imagine how it must feel to be a creature who only wants to live.

Did you know how pathetic it can feel to be climbing towards 40 and to still struggle with that sinking feeling that often makes going to bed a miserable affair and getting out of bed even more challenging?

Do you know how much work it takes to try to pep talk yourself into putting one foot in front of the other when the world is on fire? And as much as you try not to live in the future, this too is a habit so deep that you’re forever sitting at a point in time where everything hurts and everything ends.

Do you know how hard it feels to fit the shape of yourself into a world that rewards people with thick, callous skin? You watch all the ones you love struggle, you watch the world suffer and it seems as if the only ones who are able to pay their bills are the people eating others alive. How do the Jeff Bezos of the world live with themselves knowing they have the power to change the world for the better… but they don’t?

I want to leave this writing with something positive, something hopeful… but I don’t feel that today. As I age, I want to be wiser. As I age, I want to be stronger. But perhaps this isn’t how it works, perhaps we only build ourselves up for a time before we start to crumble. Perhaps the only thing we can do is practice self-compassion, communicate our suffering and offer each other empathy. The warmth of company as we grow, change and then start to fade like flowers, like stars, like the sun.

Perhaps the hopeful thing here is this: This evening, I saw a knife in the kitchen and flirted, for a moment, with the slightest penetration of my skin. Just a scratch. But. Instead of going further, I instead came here to write and you know what? Giving myself the space to express my emotions has actually calmed me down. I used to write in my old livejournal freely as a teenager and it helped keep me alive. Perhaps that’s a strategy that anyone of any age should be allowed, my inclination is to judge myself for being so angsty, maudlin and childish but the fact is that I felt utterly despairing when I sat down to write this and now I feel a little better and a little calmer.

Did you know that emotional dysregulation is a symptom of trauma? If in childhood, we did not have our emotions validated and were not taught how to process them, perhaps instead being told not to whinge or “dwell” on things, we may find ourselves as adults who are afraid and ashamed of our feelings. Feelings don’t respond well to judgement and shame, they need space for validation, compassion and healthy expression without the person feeling they are “wrong” for feeling what they feel. If, as an adult, we contain a wounded child who hurts as a child does, one of the most important strategies suggested by psychologists and Buddhists alike is to offer that wounded child authentic and heartfelt compassion.

So maybe there’s something positive to this writing after all: Life is full of misery and suffering, it’s ok to feel this, it’s ok to be affected by it and it’s ok to express it.

Then again, maybe I’m just looking for the positives because I feel as if I’m supposed to.

Fuck it. Morals are for fairy tales. I’m going to bed and, as with every night for the past 36 years, I shall not be killing myself. Not a bad track record, come to think of it.

Still

Why does it make me so anxious to be still?

Is it our crowded culture of constant competition? Yes but also.

It’s that I don’t want to be back there, isn’t it? Back then. Back when.

Small. Silent. An ugly, isolated, unhappy little monster, sobbing and sniffing aerosol spray in the hopes that she might get high or die. What sort of 11 year old hopes to quietly cease to exist?

One who is desperately lonely and believes that it is all her fault. The egos of children are like that, they believe they are the cause of every negative thing and so by the time they’re an adult and realise otherwise, the emotions are so deeply embedded that they are more like personality or fact.

There is no fact of fixed self. We grow and change. But sometimes it doesn’t feel that way, leave me alone for just a little while, leave me in pain and unable to distract myself, expose me to a harsh word either internal or external and suddenly I’m that little girl again.

I’m sorry, I’m awful, I’ll keep out of your sight. Oh God, I’m lonely, look at me and love me and tell me I’m special.

I’m not that little girl. All I am is phenomena in flux and the stories I tell myself about myself. But how much of my identity revolves around proving to myself that I’m not that little girl? How much energy do I put into being noticed? Into finding evidence – that is never enough – of the importance of my existence?

I’m not that little girl but. Also. I am that little girl. I grew up but she’s still inside me and when she’s feeling vulnerable, as an adult I am learning how to give her the kindness and compassion that she so badly needed back then.

It’s ok my love, it isn’t your fault.

Empathy and Boundary

Empathetic me, I’m still learning to be boundaried to prevent the scurvy of compassion fatigue.

When do I tune in to the pain of the world? At what frequency? For how long? How do I keep my heart open? Radically open? How do I listen to the screams and needs without drowning out my own?

I don’t want to close myself to protect myself. Only fearful folk build walls, only foolish folk believe in their efficacy. I need to know the difference between a boundary and a wall and I need to practice the flexibility required to navigate complexity.

When do I tune in to the pain of the world so that I am not complacent? So that my ears, nose and mouth do not fill with sand? When do I hide away, hibernate, rest and practice self-care, self-maintenance?

I’m a secular Buddhist who is uncertain that she believes in a separate self, in fact I don’t. So if I don’t believe in a separate self, how do I practice self-care? Well, I suppose the answer is simple, to care for oneself is to care for others. But too much self-care becomes self-indulgence at the cost of others. Self-involvement. Selfishness. The balance in difficult and a constant practice.

Breathe. Eat. Sleep. Hold space. Make friends with fear daily and remember that compassion is a practice that must extend both inward and outward to be effective and sustainable.

Remain radically, bravely open-hearted.

Breathe.

Intergenerational Trauma

I’ve been thinking a lot about intergenerational trauma. Like how someone might be abusive because his father was abusive because HIS father had untreated PTSD from going to war as a teenager.

Then I think, as I often have, about how a privileged person might look at a population of indigenous people and wonder why they “haven’t got their act together” without taking into account what might happen to a people when they have, in recent history, the collective trauma of an entire stolen generation.

I think about how I am someone who has had a relatively stable, middle class upbringing, with access to books, family, love, a roof over their head… and how those things can give one a belief in their right to love, to education, to a voice that should be listened to. I think about someone who has been through a broken home, poverty and homelessness and how that might cause them to believe that they are unworthy of education, of security, of love.

I think about how our self-perceptions inform our decisions and how the outcomes of our decisions inform our self-perceptions. I think about poverty traps. I think about the ways in which we discuss the privileges of money, gender, race and so on… but what about the privilege of love? What about those who haven’t had love in their childhood? Isn’t love a privilege that not everyone is given?

Those who go unloved, or are badly abused or neglected when they are small, when their beautiful brains are still developing… what an incredible, long-lasting trauma that must be. What a tremendous setback at the very start of your life, like the race has begun and your legs are already tied together. How hard that must be, how brave and resilient such people are for pushing onward.

I’ve been thinking a lot about compassion and empathy. How undervalued it is. How desperately we need to cultivate more of it. How many more discussions we have to engage in about the way pain breeds more pain. How someone’s bad decisions might be the result of the only coping mechanisms they were capable of coming to when they were small and vulnerable.

I’ve been thinking a lot about how much healthier we’d all be if we funded better mental health care, if we listened to more stories of people who aren’t the same as us, if we simply sat with ourselves and practiced loving kindness directed both outwards and in.

When I see someone behaving in ways that seem stupid, baffling, or infuriating, I try to ask myself where that comes from. So often, the answer is pain. There is so much pain residing in the hearts of our species, I hope never to close to it but to remain open, to sit besides it with empathy and compassion.

Our Tangled Roots

I’m learning on the fly how to hold the pieces of myself together. It’s a skill I’ve never been good at before, I’ve so often crumbled, wilted, broken down, melted down. But now I know it isn’t just about me, now I know the ways in which the architecture of myself is interlocked with the structures of beloved others so that we hold one another up.

Did you know that some trees fuse their roots together? They share information and nutrients and become stronger within this interdependence.

I used to think that I wasn’t important, that my absence would be to the detriment of nobody. Wisdom came when I nearly ended my own existence and was confronted by the tremendous pain of a beloved. Now I can clearly see the way hurt spirals outwards and I feel, as a deep responsibility, the importance of my continual striving to keep myself intact.

Kindness is to never shame those who cannot cease their disintegration. Compassion is to understand the drive towards self-destruction and know it for what it is; the anguish of an animal in acute pain. Pain that may feel utterly inescapable. Pain that may be utterly inescapable.

Do you know that you are important? Perhaps you cannot conceive of the ways in which your existence enriches mine, perhaps you cannot believe that your absence would leave a permanent wound within my chest. Do you know that you are a source of love and light and joy? Do you know that I’m holding the pieces of myself together for you?

Look, can you see it? Love, can you feel it? My roots are fused with yours.

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.

First Feelings

Just around this time last year, my husband Wes whisked me away in an aeroplane for an emergency holiday in Bali. I say “emergency” because that is how it felt to him, digging deep into his tax return, he flew me to a place that was tropical and vibrant as a means of emotional resuscitation, a life-saving procedure. We were lucky to be in a privileged enough situation to be able to do so and I am lucky to be so loved.

Only a few months earlier, a different lover (Wes and I identify as polyamorous, that is to say we are in an open relationship where we both have multiple loves and yes thank you we’re very happy that way) let’s call him Pete, had flown me to holiday with him in New York where things between us had gone incredibly sour. Upon my return, I was diagnosed with a sort of post-traumatic syndrome and my therapist and my closest people were telling me that Pete was behaving in ways that were emotionally abusive. Combine that with the depression, chronic pain condition and suicidal ideation I had been struggling with for the last couple of years and you’ve got yourself a recipe for someone who doesn’t really want to exist anymore. Suicide was constantly on my mind, I had planned how and had come close one too many times. The light within me was flickering dangerously and Wes, who knew and loved me best, was terrified.

So he flew me to Bali and just as he had hoped, the change in the air and colour and the company of my beloved quickly had me waking up. I adore the tropics like no other place and the ugly beautiful intensity of Bali mirrored something within my own internal landscapes. I started to feel excitement again, particularly as we were to do a diving course which would have us realising one of my lifelong dreams of scuba-diving in coral reefs.

Except as I already knew too well, life doesn’t always go according to plan. On the first day of our diving instructions, an over-eager instructor gave us flawed lessons which caused us both to sustain inner-ear injuries which we only became aware of late in the day. That night, Wes and I sat in a restaurant overlooking palm trees, chickens and tourist resorts and realised we were not going to be able to complete our diving course.

Heart swamped by bitter disappointment, the vision of my green cocktail blurred with tears. I felt miserable and I felt stupid for feeling so miserable when here I was drinking a cocktail in the tropics, a vision of privilege and good fortune. I felt ashamed of myself for feeling so unhappy when our holiday had only just begun. Optimistically, Wes said “Hey, no need to be upset, we’ll still have a good holiday, you know?” and at those words, something inside me clicked and, emotionally, angrily I snapped “I know, ok? I know it’ll be a good holiday! I know we are lucky to be here and I know we will find other things to do but right now I’m really fucking disappointed because this is something I’ve always wanted to do and now it’s just another fucking broken dream, you know? Just another thing I can’t do to add to the giant list of things I can’t do! Can I just wallow in this misery for awhile? I’ll be okay but can I just fucking be upset for awhile?”

“You know what, you’re right. That’s fair. I’m upset too. This fucking sucks.” And so when we went back to our hostel, we wallowed. We ate junk food, drank beer and I cried in Wes’s arms. I cried giant, heaving sobs of bitter disappointment that were a little about the ear injury but much more about the broken dreams caused by my chronic pain condition and disability as well as the deep hurt I was feeling over the betrayal of trust and emotional violence enacted upon me within my relationship with Pete who I was still deeply in love with. I allowed myself to feel sorry for myself, really, truly sorry.

Wes held me and I bathed head to toe in the bitterness of my disappointment and misery and after only an hour or so of wallowing… I felt fine. Better than fine, I felt good. Better than good. And happily, we planned out the rest of our holiday, adjusting our plans, discussing possible new adventures. We then went on to have an incredible holiday, one that was full of exploring, eating, fucking, nature, beauty, art and healing. During that time, we read Buddhist books together and I discovered the philosophy which has helped me develop a deep compassion for myself and a capacity for coping with my struggles with greater equilibrium.

So I learnt something really important through that experience. I learnt to take my emotions seriously, to stop judging them and stifling them and instead to let myself feel them completely so that they might pass through me and shift and metamorphose into something else. My therapist spoke of that phenomena as the idea that we experience both primary emotions and secondary emotions. Primary emotions are the first emotions we have in response to the phenomena of our lives and those emotions are understandable, reasonable things to have. Secondary emotions, the emotions we have in response to our emotions, more often than not, those guys are cunts. In my experience, secondary emotions tend to be judgemental emotions, the guilt that says “I shouldn’t be feeling this, I’m stupid for feeling this.” Secondary emotions are perhaps useful in helping us keep some perspective on our emotional landscape. Maybe secondary emotions are like our conscience, but left unchecked, they’re the jerks that stop us from giving ourselves the compassion and mental space to actually process what we’re feeling.

Similar concepts are described in Buddhism. My friend, Chance, explains it well in her excellent writing here:

“There is a Buddhist parable (or koan) about “the second arrow”. In short, the parable says that if a person is shot with an arrow, there is no point shooting a second one. The teaching is that sometimes in life you will get hit with an arrow. But many of us then shoot one at ourselves in response.

Buddhist teacher Tara Brach uses this parable to explain the phenomenon of blame – the human tendency to react to painful events by blaming others, or blaming ourselves. I remember when I first heard this parable (not from Tara but another teacher, Gil Fronsdal), I was struck by the idea that we could separate feeling awful, burdened or weary from being angry with ourselves for feeling those things. Perhaps it would be easier if we could just feel them.

This is what often happens with depression: we feel like crap, and then feel ashamed of feeling like crap, partly because we see the impact of it on those who love us. Sometimes shame is useful, and there is room for looking for answers, but if you are already wounded, injuring yourself further doesn’t help. It makes it doubly hard to put the pieces back together.”

So when I experienced the disappointment of not being able to complete the diving course, my habitual pattern was to emotionally attack myself for feeling disappointed, to tell myself that emotion was self-indulgent. But this time, I allowed myself to indulge that emotion, I validated the reasons I was disappointed and gave myself the compassion and space to feel unhappy for awhile. Through the act of doing so, I was amazed to see how quickly the miserable feelings passed and how quickly I was able to go about the task of having an amazing holiday with my gorgeous husband.

When we returned home, I ended things with Pete via email because I realised that there was no reason I should have to endure another verbal sparring match with him, no reason I had to listen to another cruel word. It would still take me over six months to start taking seriously the depths of the hurt his emotional abuse had caused because of course his default position had always been that I was overreacting and playing victim. Gaslighting is like the externalisation of the second arrow – your abuser shoots you with the arrow of their initial violence and then the second arrow is their denial of their responsibility, their insistence that you, in fact, are the one to blame for their bad behaviour. Their stubborn belief that your recovery from their wounds is your responsibility alone. For a long time, I internalised that message and in fact I’ve only recently allowed myself to feel the deep rage and disgust I have towards him for his behaviour. That has been healing as for a long time, I denied myself my fury.

Several months after returning from Bali, I had my first surgery for my thoracic outlet syndrome, a scary prospect with no guarantees. After my surgery, the surgeon came to me and said that mine was the worst case that himself and his assistant surgeon had seen and, after thanking him for such incredibly validating news, I broke into tears while my mother and husband held me and cried with me. After many years of not being taken seriously by a great multitude of medical professionals who made me feel as if my struggles with my health were just me being a hysterical woman, or incompetent, or crazy or just overreacting to my pain, after so many years of essentially being gaslit by medical professionals, to discover tangible evidence of the reality of my experiences was profound. And healing.

I’ve always been an emotional person, as a child I was told by adults that I was too sensitive, and as an adult I have often been told the same thing. After the experience in Bali, after the experience with Pete and after the experience with my surgery, I resolved never to disregard or minimise my emotions again. Yes, it is true that I feel emotions with perhaps more intensity than many and it is important for me to regulate and manage my responses to them with self-awareness, however emotions are a type of intelligence and more often than not, a reasonable response to the circumstances of our lives. We do not have to be controlled by our emotions but nor do we have to deny them, our emotions are a fundamental aspect of our lived experience and they have a great deal of wisdom to impart to us.

From now on, I am determined to listen to my emotions. I am determined to sit with the truth and wisdom and beauty of them. I am determined to give myself the compassion I deserve when I struggle because life is goddamn hard sometimes. And I am determined to do the same for others. Contrary to the belief of some, becoming better acquainted with emotions does not weaken me, in fact I have never felt stronger, never felt more resilient.

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.