There’s something infinite in my son Oskar, I realise, as I gaze out to sea, lost in its endlessness… its vast blue grey expanse, cast in daylight, seeming to stretch and drift into eternity. I hold him in my mind’s eye, a portrait of Oskar, smiling mischievously, as he whispers bittersweet words of provocation and affection into my ear. He is forever the rebellious contrarian, capturing perfectly the ambivalence in all of us, the perpetual dance of conflicting feelings, which he explores and plays with, with both curiosity and candour. Oskar inhabits this male domain comfortably, the boy or man who finds it far easier to express affection through ribbing, roasting, taunting. “You’re a fucker, I love you,” he utters, his eyes affixed on me.
His words linger. I have been a fucker sometimes – grumpy, irascible – my frustrations boiling over. What are these frustrations? A part of me rages at his condition, Duchenne muscular dystrophy, the fatal disease that afflicts him, which I feel powerless over. And there is great shame in this, which rumbles and churns in the pit of my belly. Shame… because I’ve been a fucker about something over which he has no control, which he was born with, did not choose, and which now defines him. Shame on me, when I chastised him for needing changing yet again, when he is physically unable to change himself! Shame on me, for snapping at him dismissively when he did not answer me right away, in spite of his learning difficulties and autism, which often co-exist with the disease! Shame on me, for scowling at him, when he was unable to contain his excitement and screamed wildly and joyfully! Does it define him, his Duchenne, and does my shame define me? Surely Oskar is more than the disorder he was born with. And am I not more than my shame? Not when it consumes me, I think, lost in these never-ending questions about what makes him who he is, and me who I am.
Oskar does not overthink, losing himself in endless reflection, analysis and rumination, as I sometimes do. Rather, he sits, not always patiently, with what is and what is inside him, often seeming to brim with acceptance of himself, others, and the world around him. There’s enormous grace and wisdom in him. In me, there is shame, a lot of it, running through my blood, bones and sinews, deep in my being. It has the capacity to shape me, or rather misshape me, even deceive me, such is the pressure it exerts, the weight it bears, the toll it takes, and yet even when it twists, contorts and poisons, it remains a perversely dependable albeit dark, morbid companion.
Shame… it’s hollow and ineffectual mask hides those parts of me I do not like – the victim, the martyr, the perpetrator – parts that must be welcomed and embraced like all others. I might show, not hide, those other parts – the manager, the fixer, the champion of others – the ones I am proud not ashamed of, yet are these parts as good, and as commendable, as I think they are? Might they also be masks, pretenses, of what I’d like to be, who I’d like to be, rather than who I really am? Or am I the sum of many parts, a multiplicity of selves?
Shame is always hidden and buried… knotted in self-consciousness, defensiveness, self-absorption and profound distrust, of oneself and others. It’s roots can almost always be found in childhood pain, at least this is the origin of mine, a nervous system hard-wired from a very young age to feel perpetually anxious, unsafe, insecure, in crisis. The unsurprising outcome of having two anxious parents. My mum was a highly anxious child, born during the war to working-class parents, with a family history of mental illness and suicide looming large, and she was unwanted, made to be quiet, any spontaneous joy or self-confidence quashed in her from a young age; while my dad was the product of Central European Jews, who’d got out just in time while leaving countless victims of the Holocaust behind, forging a relentless and determined path of wealth, status and great professional success in the pursuit of survival, assimilation into the British upper middle class, and a new life.
Both their foundations were beyond shaky: they were crisis-ridden and desperate. They had to make themselves feel steady in any way they could, to lessen the fear and chaos inside them, manifest in their respective families. A fearful child and teenager, embodying each of them in different ways, I became a master at being ‘steady’, always holding it together for myself and others, forever kind, dependable and patient, all the while, in the manner of a true co-dependent, shaky as hell inside, behind the ‘coping’ mask, and carrying a bucket load of rage.
I spent a long time blaming my parents for the foundations they gave me, both of them absent, preoccupied, unable to meet their own needs let alone mine and my sisters. My mum… quiet, passive and introverted. My dad… loud, manic and volcanic. But then, did I not go on and do, be, the same? I might not have been an addict in the conventional sense, but I was intoxicated and consumed in other ways, with my own go-to crutches and obsessions, principally work and ambition, just as harmful to those I’d vowed I’d give all of myself to… my children… so as not to harm them, as I had been harmed.
It was at the point I saw and felt this fully, that despite my best efforts I’d repeated so much of what had caused me suffering, that I realised I needed something greater than myself, to help, heal and guide me through. For me, the power greater than myself was fellowship, perhaps a stronger more meaningful word than community, because implicit in it is the idea of fully trusting and surrendering to another, or others, and inviting them to witness the chaos, the frailty, inside. I know when shame has really got me. It’s when I’ve fully abandoned myself, consigned myself to the scrapheap. “I’m no good, I’m bad, I’m inadequate, defective, broken, unlovable… a piece of shit!” This descent into its abyss might start with feelings of mild indifference – shame is slippery and illusive in this way – but then spirals swiftly downward into compulsive doing (a habit of excess, as most shame-based behaviours are, constructed and employed to get the fuck away from the difficult feelings, to avoid rather than face them), then unforgiving self-censorship, brutal self-judgment, confusion, numbness, panic, and finally, collapse, in my case embodied in a curled up foetal position, frozen and paralysed. Succumbing to shame’s venomous narrative is the ultimate act of self-betrayal, self-sabotage and self-abandonment. And though it’s victim, I’ve come to realise I’m also its architect, as it thrives off self-obsession, in a narcissistic vein, and also worry, cruelty and a need for control.
Hollow, scared and alone… the frightened, rejected and abandoned little boy inside me, still lost and angry after all these decades. How many years I longed for intimacy – the other side of shame – to be able to fully show and express myself to someone, warts and all, and them to me. It’s impossible to be intimate without reciprocity. And how I longed, instead of being punished for being imperfect, to be accepted, embraced and loved for my limitations and failings. There’s cruelty and despotism in much self-help and self-improvement, manifest on every Facebook reel and Instagram post from another phony and self-congratulatory guru we could all do without. Does not the truth merely lie in a need to be whole again, for all those parts in opposition to come together, to find a way to co-exist, in a messy, mysterious, painful but beautiful union.
The gift of Oskar, the grace he offers me, in the face of such shame, is the permission to move towards serenity, towards love. To no longer hate myself. Self-hatred does not work, in spite of its habitual and seductive allure. Rather, it’s a living death. Serenity is not the absence of problems, but the presence of unconditional love, for ourselves and others. Without trust, we cannot love and be loved. And so without nurture, without necessary food for the soul, we turn on ourselves or others. The wild, playful, spontaneous and life-affirming glint in Oskar’s eye contains both the instruction and permission to let go, and more than this, to fully accept that I can never live up to the perfection and ideals I have set myself, and others have set for me, and if I persist in trying to, then I will likely kill myself. Suicide, for some, becomes the only liberation from the tyranny of shame. Instead, Oskar invites me, in his boundless, oceanic love, to feel vulnerable, scared, out of control and powerless, in the face of my love for him, which conversely, in this act of deliberate surrender, gives me all the power and hope I need. He is also giving me the strength to say, “Fuck it!” To finally give up on the idea of not being enough, of not measuring up, either to my own perfect standards or the standards of another. But rather, to stand on the rooftops and declare, “I am enough, just as I am.”
I am able to be still with Oskar now, in his infinite presence, to show, assert and commit myself to him – in spite of his life-limiting disease, which in all probability means he will not be with me and others for that long. I will show up for him – he is my grace, my ocean – again and again, until the end… be this mine or his.