Addendum

Etymology for pain indicates a rooting in the Old English term for ‘penalty’. On some other level, I also think of the word ‘pine’ when considering pain. That aside, it has always amused me that tenderness is a perfectly acceptable placeholder for pain as per the thesaurus.

A running joke at my boarding school was about me never being allotted the top bunk in the dorimtory. There was a specific reason for this — if you let me sleep on the top bunk, there was a really good chance that I’d fall off of it while waking up. I wasn’t a sleepwalker or even that clumsy. It was just that ever since I can remember, I have always woken up with this startled urgency which translates to jumping out of the bed in a very literal sense. Over the years this has meant romantic partners had to learn, quickly, to not engage in any dreamy ‘canoodling’ during the morning because I kick like a neurotic colt while stumbling out of bed. Few years ago, I got out of bed with my characteristic frenzy and immediately crumbled on the floor like an upturned clothes-basket. I couldn’t feel anything south of my knees. The nearly refractory numbness lasted several minutes. There were other unwanted encores of this sudden paralysis that followed the first incident. A few weeks later, I was diagnosed with an auto-immune disorder and till date, the true nature of my condition is at best acknowledged as a medical mystery that is riddled with ambiguity and devoid of any feasible panacea. My consulting specialist and I laugh about the prognosis of pain. He often tapdances around the distant possibility of reduction in voluntary bodily movement if things get more complicated.

In Joka Alharthi’s masterfully daedal ‘Celestial Bodies’, a line stopped me in my tracks — “Experience, in reality, is a chronic disease”. You can’t shun experience. You can’t suture the ways in which it rips you apart. Like an animal who hides in a ditch till the fractured bone heals, I am given to waiting these days. So far, I have chosen to not speak about the prolonged episodes of pain apart from a chosen few people in my life. It has taken several years to clear the hefty debt to C-PTSD so I can now recognize that not everyone deserves my vulnerability. I tire easily of the socially programmed understanding of words like ‘resilience’ and ‘strength’. I play anagrams with them in my own head when they are dragged in for context. Resilience. I is silence. People mean well but as anyone who struggles with or works within the space of mental health will tell you — Intention is not enough for compassion. When I speak about chronic pain, I now assume some form of stoicism; an acceptance that life is inherently painful and while you get some timely placed brackets within which the sundering and surmounting can occur, largely the pinpricks of pain continue extending their own ellipses.

My father’s letters always ended with ellipses. Green ink, for hope. And dots like stones lined to form a broken path. In Catalan, he would sing that I was his neverending tomorrow. When you are Romani, the safest place you can survive is the future. I sometimes feel like he erased himself from my life, my past because he was petrified of raising a daughter with his ancestral history. That’s what most people don’t understand about the intersection between trauma as a racial memory, a psychological cage and a physical withdrawal. My father had to prove he was more powerful than any pain he encountered. I think he hated living like that so much, he couldn’t bear to pass it on to me by way of proximity.

‘They call us lazy, no? If I fall sick they will just say I am pretending. That I don’t want to work”.

I watch the news spill over with images and cries of migrant workers holding up their children as they try to latch onto any moving vehicle that will transport them home. That desperation is violence. The language in media is fraught with such compulsive hatred of poverty and marginalization. We see abject dehumanization through statements about ‘nabbing fleeing workers’. This reckless belief that certain people are property.

My father knew it well. Roma know it well. Even in the wake of CoV, the fear within Romani settlements is not of the disease as much as it is of those who will ascend upon them as ruthless ‘saviours’. This schema of illness as pretense, as privilege. This cruel determination of who gets to be ill, how much and how long. Somatization, within the paradigms of diagnostic criteria in psychiatry, refers to the experience of psychological distress and unease as physical signs of illness. I think of my father’s stern spine, his refusal to sit down in waiting rooms; his pacing shadow cast on a paint-torn brick wall carrying the weight of all the generations previous to him. The weight of displacement and samudaripen. The weight of slurs and segregation. The weight of safety through invisibility, the weight of raising a reed-thin, vehemently curious chatterbox in the shape of his daughter.

Sometimes I wonder if I became a psychologist to follow the peregrine falcon of my father’s mind. At other times, I feel I did it to unlearn its nesting place within my own mind. I inherited the inability to ask. For help. For hope. For healing. It took me a long time to align myself to the idea of asking. If you grow up the way I did, personhood is where independence and isolation are in a permanent ouroboros. The more I need to ask, the more I leaned into giving.

May Sarton wrote the following in ‘Journal of a Solitude’ — “How unconscious we are, often, that giving may actually be asking, asking at the very least for attention.”

It is also difficult to differentiate between attention and affection. To purposefully separate validation from acceptance knowing that both are essential to the bricklaying for endurance.

In her diaries, Anaïs Nin confesses — “I was always ashamed to take. So I gave. It was not a virtue. It was a disguise.”

When you are born in the margins, you are led to believe that the only way to be seen is through disguises. If I was hurt as a child, I would bring home wounded animals to heal. If I was pulverized by merciless depressive phases, I would volunteer at more community spaces than I could count on both hands. If my partner was abusive, I would take on more survivors of domestic abuse as my clients. My coping was an arrow drawn outward from the center of my being; the heart of my pain.

This new pain has forbidden me from jumping out. Physically and psychologically. The other day, the moment I placed my foot flat on the floor after waking up, it felt like a million needles edged into its sole. I am still limping, on and off. It is hard to neutralize the chimera of your own perception that body and self are synonymous. That this person I am is mapped in my body and these glitches within its circuit means that the map is slowly being altered.

The lockdown has ushered in the Age of the Closeted Chef’s Delirium in my household. Cooking is nourishment in a more direct way. The one thing that my father, a seasoned and self-trained chef, would allow himself without guilt was the joy of an exquisitely prepared and lazily consumed meal. Over the years as my relationship with the word nourishment has changed and evolved, cooking for myself has been a pretty solid indicator of how much hope I have in making through a particularly rough patch. When I started studying and then practicing ‘The Hakomi Method’ both for myelf and for my therapy clients, the first thing that echoed through me was the phrase ‘nourishment barrier’. Developed by Ron Kurtz, Hakomi is a way of centering somatic mindfulness or simply put, being more aware of your body and your relationship with it. It speaks rather distinctly of how we all have our own senstivity cycles that decode the rhythms and patterns of our life’s experiences. Instead of shutting out sensitivity, Hakomi tries to enhance it while subtracting the stigmas attached to it. In order to discern our senstivity cycles, we have to recognize that perhaps we have erected certain ‘nourishment barriers’ that frustrate, deflect and terminate certain kinds of nourishments we most need. These barriers could have been raised as coping defenses to protect ourselves from suffering but over a period in time, the emotional armour has outlived its use and is now just a ton of iron imprisoning us within ourselves.

When my guide asked me what was the most consistent act of care I displayed towards loved ones, I answered cooking. When he asked me when was the last time someone had cooked me a meal I liked, I couldn’t remember.

Last weekend, my sister and I took over the kitchen. A part of my condition is nerve damage or neuropathy but some of it is also osteal or bone-based pain. My bones are sore and more disobedient wherever they cusp into a joint. My wrist in particular has been a circle of fire last few weeks. I have been unable to grip certain objects completely and end up dropping things once in a while. A massive embarassment in my own head. I dropped a plate and my sister noticed. She asked me and I rubbished her concern. She held forth a glass and said, hold this. I tried and for a minute it was fine. Then, boom. She asked me why hadn’t I mentioned this. I said I was afraid. Not just of what someone else’s response would be but also to say it out loud to myself.

To admit that I was unable to hold things or hold on to things. To admit that something I have always been chastised about on an emotional and interpersonal level, by mymother, my co-workers, ex-lovers, teachers and even healers is now a physical reality as well. Scherezade doesn’t like holding on. Scherezade will drop something when it exhausts her interest.

Except, I recognize now that I wasn’t dropping anything out of a paucity of interest. I was doing it because my nourishment barrier distrusted the aftermath of holding on. Whatever came next was always a catastrophe to me. How easily we forget that even an apocalypse merely means a revelation. Maybe I was afraid of what it would reveal to me about myself. Like my father was after I was born.

I was afraid to admit that my wrist has been feeling wonky for a while. It meant admitting the possibility of not writing or a reduction in my capacity to write; to visualize the severing of my one dangling bridge away from despair. It meant considering, even if briefly, the possibility of dependency on others. A completely anomalous territory.

Now my sister insists on being the ‘vessel-holder’ whenever am struck by an excessive version of my illness. I know that doesn’t take anything away from the fact that am brilliant at cooking. I still wake up on certain days fully paralyzed for a few minutes and stare at the ceiling wondering if there is any real truth to the fact that spiders can’t fly.

Nus in Urdu means nerve. Nosh in Urdu means food. I am taking stock of what am I feeding to my nerves and how much of it is a matter of nourishment versus fear.

Scherezade Siobhan is an award-winning psychologist, writer and a community catalyst who founded and runs The Talking Compass — a therapeutic space dedicated to providing mental counseling services and decolonizing mental health care. Her work is published or forthocming in Medium, Berfrois, Quint, Vice, HuffPost, Feministing, Jubilat, The London Magazine among others. She is the author of “Bone Tongue” (Thought Catalog Books, 2015), “Father, Husband” (Salopress, 2016) and “The Bluest Kali” ( Lithic Press, 2018). Find her @zaharaesque on twitter. Send her chocolate and puppies — nihilistwaffles@gmail.com. Tweet at her @zaharaesque.