Advantages

Despite the challenges, suggested a friend the other day, there must be advantages of your chromosomal complement. I struggled to think of any.

Some identify increased empathy as a positive impact. But where does that come from? Isn’t that just a psychological effect of a youth spent being sidelined and derided for perceived difference?

Certainly, those experiences have given me a very strong rapport with the underdog, but I don’t know that they can be attributed directly to the condition.

What are some of it’s more direct effects? Shyness? A positive trait from a religious perspective, but one that has also paralysed me throughout my life.

A more sensitive personality, manifesting itself as kindness and helpfulness? Granted, a positive trait in some circumstances.

But beyond these characteristics, in what way could this condition possibly be considered advantageous? It does not cause x-ray vision or the ability to fly. It causes delays, difficulties and deficits. We are normal humans, with certain features disabled by default.

This chromosomal complement is an anomaly. Yes, from a faith perspective, it was bestowed by design. Some of its effects could be said to be positive. But advantage? I remain to be convinced. Perhaps somebody could enlighten me.

Hypotheses

The past few months have changed everything: my understanding of the major events of my life, in particular.

It all began when my beloved discovered — in her attempt to understand my persistent blues and aching limbs — that I had been neglecting treatment for well over two years. In truth, I’ve been neglecting it for most of the past decade, having the injection I’m supposed to have quarterly very irregularly, with long gaps in between, sometimes six months or a year apart.

They probably weren’t very sound, but I had my reasons for doing so. Mostly that I felt myself in control of my spiritual development without it, the calls of my lower self subdued. But of course there was a clear trade off: that heavy, lethargic melancholy.

Still, I’d been found out. So in February, my beloved had me promising that I’d keep up with interventions from here on. I agreed, having my first injection at the end of the month. I’ve been a good boy since then, following up on every appointment.

In the weeks that followed, two things happened. The first of them, describing myself to a fellow I once knew hoping that he might remember me. In passing, I attributed my appearance to a then-undiagnosed health condition. The second of them, an acquaintance telling me that he had been sure I had the condition the first time he saw me.

Unanticipatedly, these two interactions suddenly had me looking into the condition anew for the first time since diagnosis nearly two decades ago. If you were to review all that I have written throughout this period, you would discover that prior to this year, I only ever mentioned it once.

Indeed, prior to this year, I had only ever spoken of it to my wife and the healthcare professionals I have interacted with through the years. I have never spoken about it to my parents or siblings, nor to my friends, however close. I suppose that was mostly because I had very little information to go on myself. It had been dealt with so passively by my doctors that I had considered it of little significance.

It turns out that was probably not the case, and that the chromosome disorder I have been bestowed with has had an enormous impact on my life. Whereas two decades ago I had a couple of pages of inadequate information to go on, with which to understand its effects, all of a sudden I found myself able to access quality health information and clinical research online.

For the first time, I have begun to make sense of the events of my youth. My delayed speech, my quiet character, my comparative weakness, my struggles at school, my emotional immaturity. The narrative that I was just lazy was so pervasive that I have internalised that explanation my entire life, understanding all subsequent events to have been a consequence of that laziness alone.

Whereas the condition was once addressed nearly exclusively as an endocrine matter, there is a growing body of research into its psychosocial and cognitive impacts. It’s not yet really known whether cognitive delays are a consequence of hormonal deficiencies or that extra chromosome itself, for research is still in its infancy. Nevertheless, it’s now recognised that the condition is often associated with cognitive and language deficits.

The latter I have written about at length through the years. Not in terms of my diagnosis, but in reflecting those inner frustrations about a tongue that rarely submits to me. Friends in the past have picked up on that, asking me whether I think the reason I write so much is due to my inability to articulate my thoughts verbally. Very likely. All of my friends would describe me as the quiet one in gatherings, capable only of interjecting with unfunny witticisms.

Looking back on the past, as I have done at length over the past year, I now doubt nearly everything: my long-held understandings of events, at school, university and in the early years seeking work. Nearly everything I once thought to be the case, I now look at in a new light, mindful of increased understandings of the actual effect of the condition on my life and its impact on others’ perceptions of me.

My increased understanding of the condition throws a whole new light on my relationships with my family, friends and strangers alike. It’s true that my journey of faith had a detrimental impact on my relationship with my family for years, but what of the impact of that extra chromosome and the consequential deficiencies? I would guess that the two are in fact intimately linked, this condition setting off a chain reaction that ultimately I would choose to address with faith.

Today, these are just understandings, hypotheses. But, who knows, perhaps tomorrow they may lead to some kind of recovery or healing. Perhaps they may cause me to seek out professional help to address that lifelong brain fog which afflicts me. Perhaps I will seek interventions to help me overcome the feelings of inadequacy which have stunted career progression. Perhaps I will at last access life-skills training, enabling me to normalise my behaviours and interactions.

Today, theories, inferences, suppositions. Tomorrow: let’s see where these hypotheses may carry me.

Brain fog

This is the best way I can describe how my head feels much of the time. It has affected me my entire life, which probably explains my inability to advance my career. It feels like a weight right at the front of my forehead, which grasps my train of thought mid-sentence and throws it to oblivion.

A few years ago, my father asked me how long I had been having the short-term memory blackouts that were becoming ever more apparent back then. I told him I couldn’t remember, which made everybody laugh. But the reality is that it has afflicted me for as long as I really can remember.

I pondered on it again just now, because in the space between activating a function in my current project, I completely forgot what I was going to do next. Alas, this is all too common. Unless I have total concentration, and no interruptions, I will frequently lose my train of thought. I suppose that is why I work alone for long periods of time, only to emerge at the specification and hand-over stages.

I probably make myself sound like a total recluse. I’m not. I have grown in confidence as the years have passed by, and generally work well with others. But there is no escaping this fog which descends on me so often, particularly when contemplating new opportunities. I realise I will probably be stuck in this role for life now, unable to move on.

That’s not necessarily a bad thing. I generally enjoy my job, and we have managed to find a lifestyle which fits into my level of pay. No huge outgoings, a modest home, living within our means. If we weren’t, this predicament would be more burdensome. Alhamdulilah for our barakah.

As for my social life. Well, my intellectual friends have just had to get used to me, as the disengaged one in conversation, unable to articulate sentiments in good time or contribute anything new. Its why I’ve taken to writing at length instead, because only my typing fingers seem to have any fluency at all. As for social gatherings: I avoid them if I can. I can’t do smalltalk, only immature jest.

Such is life with this brain fog which descends daily. It’s like a perpetual numbness that never leaves. Not really a pain, just a weight. Every day is the same.

Apologetic

These days my inner grumblings have me contemplating why I was always not just passive in the face of harassment, but apologetic too. Last night, my memories had me back in the flat I rented from a church housing association in King’s Cross in the late ’90s — for years the backdrop to my restless nightmares.

I resided in that grotty flat through my second year at university, the summer that followed and the first term of my third year. I had come across it during that searching phase of my life, while attending a popular church in central London.

Despite the entire building shaking whenever a tube train passed beneath us, it was a comfortable dwelling for most of the academic year. There were two other tenants in my flat: a tall young man from Hiroshima — quite an eccentric — and an Italian woman.

There were a series of other flats downstairs — the common areas of which I would clean weekly — but I didn’t really know those residents at all. I would just clean up their mess, leaving their kitchen spotless, vacuuming the dusty brown carpets in the corridors and on the stairs. For a time, I earned the praise of our landlord for those efforts.

Those comforts would come to an end just as the academic year did. My Italian student neighbour moved out, and a middle-aged man moved in, along with his burgeoning record collection. He was a different breed from previous tenants though.

While the others had just been students in need of a home, he was a true evangelical on a mission, intent on reminding us that ours was a Christian housing association established to provide accommodation to Christians specifically. It was thus a given that he had every right to constantly invite me to his church.

And so the invitations came thick and fast, whenever we encountered one another in the kitchen. At first they were friendly, but as time went on they became ever more persistent and unrelenting. Each time the topic was raised, I would politely decline. When that would not satisfy him, I would offer various non-specific excuses. But in the end, of course, I would just have to come clean. “I’m a Muslim,” I whispered one afternoon, as he cornered me with more demands.

With those words, the invitations ceased. But there his incessant harassment began.

Over the weeks that followed, I would be subjected to the most peculiar behaviour on his part. On several occasions, late at night, he would trail the speakers from his record player out into the landing, place them directly against my bedroom door and proceed to blast me with Christian rock music.

Although he was my immediate neighbour renting the room next door, I took to avoiding him as much as I could, for whenever we did speak, he would be hostile towards me, threatening to tell the housing association about my conversion. Soon he would be joined by a Sri Lankan resident from one of the flats downstairs, who would stop and question me whenever I entered or left our building.

Others, in my position, would have written to the housing association to complain of harassment. But I — in typical apologetic fashion — sent a letter to my landlord explaining that since moving into the flat as a searching agnostic, I had found faith: only that faith was not Christianity.

Instead of listing the behaviour I had been subjected to for months, conscious that the housing association had been established to serve practising Christians, I explained that one of my flatmates had taken exception to my faith and that, as he was clearly uncomfortable living with me, I proposed to move out to placate him.

Although the initial response I received from my housing officer was kind, there would be no probing into the events that motivated me to write. Looking back now, I wonder why I was so passive in the face of serious harassment. No, why I was in fact apologetic. Why did I project the blame onto myself, rather than seeking redress, as I would have had every right to do?

Perhaps what happened next provides a clue. As I sat out my notice period, there was a break-in downstairs. An intruder had broken into a flat by kicking and hacking through the plasterboard wall, instead of trying to force the door. The tenant was naturally shaken by the incident, as we all were.

But while we might imagine that the residents of the downstairs flats might have realised it was unwise to leave a window accessible to neighbouring buildings wide open in what was then one of the most crime ridden parts of central London, it turned out that the drug addicts and dealers for which the area was notorious were not the prime suspects.

No: I was the prime suspect.

While I was preparing to set off for the library one morning, I received a phone call from the housing association. It was not the officer I was used to dealing with and we exchanged none of the usual pleasantries. Instead, taking up my letter to her colleague, she noted my newfound faith and, almost in the same breath, asked if I had anything to do with the break-in downstairs. Of course, I was mortified.

As her accusing words rang in my ears — “It’s disgusting!” — I wondered how I had transformed from that nice, quiet tenant who had been praised for cleaning the flats weekly to one capable of attempting to enter another’s room by merciless force. How was it that my desire to honour God had been ripped to shreds and twisted into the pursuit of criminality? 

And so that was that. Yet another slander, unchallenged as I passively absorbed months of harassment. I suspect those former tenants still have vague recollections of that once-kind flatmate turned brutal thug, who suddenly moved out in mysterious circumstances, shortly afterwards. Perhaps they’re still recounting that tale in their personal anecdotes about the criminality of the Muslims.

Looking back now, I regret my apologetic response to harassment. I should have had courage of my convictions and stood up for my rights. I should have pointed out, not with pride but with self-respect, that I was the long-standing tenant who had been respectful to all, paying my rent on time, cleaning their filthy flats weekly, who was simply pursuing sincerity before God.

But, instead, like so many other times, before and since, I just let it go. I left them to think whatever they wanted to think. Once again, I walked away, apologising for my very existence. Always, always apologetic.

Is it me?

This is the question I increasingly ask myself, cognizant of negative reactions towards me. Not a reaction to how I look, but rather some kind of behaviour I exhibit, which I’m just not conscious of.

Those negative reactions didn’t cease with maturity. I just learnt to largely avoid them by withdrawing from social settings wherever possible. In my youth, due to participation in education, interpersonal interactions were unavoidable. Nowadays that’s less of an issue.

However, about a decade ago, while enrolled in a religious education course in a neighbouring town, I encountered those hostile reactions once more. Indeed the gossip amongst fellow students was nearly identical to all I had experienced previously, leaving me quite disheartened.

So to that question: “Is it me?” Do I exhibit unconscious neurobehavioural anomalies that invite derision and hostility. Or is my own perennial shyness itself interpreted as hostility, or even arrogance? I wish I knew.

Some people get on with me very well, and would be perturbed to learn of this question. These folk would say, “There’s nothing wrong with you at all. You’re just a bit quiet.” Which is lovely, but that’s not my whole experience.

If I could, I would ask those who had negative reactions in the past what they were responding to. Was it my face? Was it my form? Was it my character? Was it something I said? My behaviour? What was it that invited so much contempt and derision?

These are serious concerns. Over recent years, I have retreated back into myself. I rarely socialise except with the closest of friends. Generally, I keep myself to myself. A comfortable coping mechanism, but one which is hardly healthy. I am becoming almost a recluse.

That’s why I can’t help asking myself these days, over and over: “Seriously, is it me?”

Hidden identities

There are two aspects of my being which I tend to hide from the outside world for very similar reasons: my faith and the name of the condition I have been bestowed with. In both cases, because they are poorly understood and so badly misrepresented, that misunderstandings and prejudices are commonplace.

More to the point, because very vocal activists — in both spheres — are intent on pushing their own very skewed and polarised representations of the phenomenon. The internet is awash with misinformation, presented as authoritative guidance, where in fact reliable information is actually very hard to come by. You have to really struggle to sift the wheat from the chaff.

I would never invite anyone to google the name of my chromosome disorder, as I was advised to by the locum doctor who delivered the diagnosis two decades ago, admitting that he didn’t know anything about it at all. In one sense, I was blessed that the internet was in its infancy then, meaning that there wasn’t very much useful information at all.

Today, it is a different story. On the one hand, it is much easier to access clinical studies and reliable medical explanations of the condition. On the other hand, there is now a proliferation of misleading journalism and activist content, pushing other agendas altogether.

But the religious realm is not much different. The same, but magnified a billion times. At least with my chromosome disorder, it is so rare that few will ever hear of it, unless they happen know someone with a diagnosis. But in the case of the faith, apparently so central to modern geopolitics, it is everywhere discussed. Even the total ignoramus has an opinion.

So it is that I keep my head down, never speaking of either, except here in my blog, which is my safe space to surface what is so important to my life. My chromosome disorder is spoken of in generic terms, as I delineate its impact on my life. My faith is discussed more openly here, but only here.

I am not particularly content that I feel the need to hide my identities. But such is the nature of misinformation: it poisons everything.

You’re not coming in

These the words that would ring in my ears throughout my youth. At school, the boys on prefect duty, forever blocking my way. At university, the bouncer outside a bar or club. Amongst peers, the young man intent on belittling me, and isolating me completely.

In those days, it would leave me distraught. I was so bitter, raging against the world. For the whole of my youth, I felt that I was being excluded from everything, forever the misfit, rejected. In selecting teams for a game of football, I would always be picked last. Amidst a crowd, I would be the one on the far periphery, completely ignored.

I suppose it’s no surprise that in the end I went my own way. Perhaps all of those experiences were a blessing in disguise, enabling me to hold to a path far away from the clamour of the thronging crowds. Perhaps it was just training for my soul, enabling me to take up the lonely road. Perhaps I was being to taught how to swim against the tide.

That bitterness of youth has left me now. Today I am capable of seeing that there was goodness in all I experienced back then. It was a probably a good thing that I wasn’t allowed in, after all.

That weight

It’s hard to convey the weight of despair I felt in those days, simmering away for a decade from the age of fourteen, but at its peak between eighteen and twenty.

I think that first year at university was amongst the worst of it, because it simply reaffirmed that there was something seriously wrong with me. Despite being in a completely new environment, two hundred miles from home, reactions to me were exactly the same. Everything I had experienced for the previous five years were repeating all over again.

Never could I make a clean break, it seemed. My departure from school at sixteen had been supposed to be a clean break too, but sixth form college just turned out to be even worse. The boys who went out of their way to harass me daily were simply replaced by others, while most of my contemporaries rejected me completely.

At college I became best friends with a young man who was nothing like me at all: outgoing, confident, a ladies-man, part of the under-age clubbing scene. An unlikely friendship, for he had been in trouble with the law, and was in perpetual conflict with his Muslim parents, a true rebel, enjoying drink, the odd spliff and a series of questionable relationships.

At university, rejected by my peers, I became best friends with a mature student, a decade older than me, who was nothing at all like me either. We were studying the same subjects, but that was where our commonalities ended. Or maybe we were more alike than I realised. We were both extremely gaunt. We both had anger issues, expressed in different ways. It’s just he dealt (or rather didn’t deal) with it by pickling himself in alcohol, whereas I just wrote crap poetry.

In the face of all I experienced, I could have thrown myself to oblivion. I could simply have decided to carry on pickling myself in vodka and coke. But instead I decided to set out on a path of reform, intent on transforming my own life. I broke away from the company I had kept in my first year, cutting myself off completely, determined to start over.

That was when my pursuit of faith became my overriding concern, at the expense of everything else. A strange course of action, perhaps, for a twenty year-old, who could have pursued so many other outlets to overcome or numb his despair. But there we are: I prescribed myself the pursuit of the One as the antidote for all I had experienced for years.

My arms were still like sticks then, my face still drawn, so youthful. I couldn’t maintain meaningful relationships, deep or special. I didn’t know how to overcome my lethargy. But I was determined to bring about change from within, in whatever way I could. Yes, and so I set out upon another road. A spiritual refugee, it’s true.

Okay

I can try to put a positive spin on it, but actually I’m not okay. I’m not happy that this is how I was made: I just accept it. I see some goodness in it. Some positive traits. But no, it’s not a condition I would seek. I haven’t come to terms with it; I just tried my best to ignore it for the two decades since diagnosis.

The past decade, we’ve been busy raising a family. I feel this has suddenly hit me hard because our children have become teenagers. That reminds me of some of the most difficult parts of my own life. But it’s worse than that. They’re starting to develop that autonomy which makes them the harshest critics of others, and I just feel that after two decades mostly fleeing judgemental environments, I’m all of a sudden back where I started.

Distraction is a good coping mechanism. My career developed over the past decade, keeping me busy. Before that, we had a longwinded and emotionally-draining adoption assessment, over two years long from start to end. A sibling-pair, very close in age, was placed with us eventually. We’ve dedicated everything to those little souls, compensating for their own infant tragedies.

I have the loving support of a wonderful soulmate, who is so much more accepting of divine decree than I am, forever content with whatever test is thrown our way. I say alhamdululah for such a blessing, and I mean that with all my heart and soul. She sees in me what I still cannot see in myself.

So I have been blessed in many ways, despite everything. Without this condition, perhaps we would never have known these children with whom we have shared our lives. Without all of those experiences in my youth, perhaps I would not be grateful for what I have. Yes, I can see goodness in what was decreed for me. But that doesn’t mean I’m okay.

Thanks for trying

If I could go back… knowing what I now know… making sense of it all… I think I would go back to those days when friends did so much for me, to explain to them why I was the way I was. I had some real gems of friends in those early days along the road — they remain friends to this day, although they soar high above me, having left me far behind spiritually and materially.

One of them travelled 420 miles north from Finsbury Park while I was studying in Scotland to support me during a time of difficulty. We went walking in the hills above Menstrie together, the winding River Forth shining in the afternoon sun far off in the distance. There was no nonsense in his advice for me that afternoon; he was direct and straight to the point.

Many a friend would have been justifiably frustrated by me in those days. Indeed, they would have been beginning to see me as my family had seen me before that. My emotional immaturity would have been troubling. My disinclination to do anything at all would have been exacerbating.

One friend, now an international lawyer, told me off in the final weeks of my studies in London when I admitted I had no idea what I was going to do with my life. He had had very definite plans from early on, and was determined to serve his nation. When we met him, he had already graduated with an outstanding degree in Classics from Cambridge. After we parted company, he went to Geneva for his postdoc. How our paths converged for a time: one of those miracles.

Another friend, then training to be a teacher at the Institute around the corner, tried to encourage me to get a job with him at Homebase. I declined, shrugging him off, scared of having to wear the green t-shirts of the uniform which would expose my matchstick arms to more ridicule.

A convert of Jewish descent, who had embraced the faith at around the same time as me, tried to take up the role of personal trainer, convinced that he could put muscles on my arms. Early morning, we would head up to Primrose Hill to make use of the outdoor fitness facilities, far less intimating than a gym. He’d prescribe press-ups, sit-ups, pull-ups, and running up and down the hill. But he would just witness my acute weakness instead.

To help me gain strength, he’d point me towards high energy protein powders, to be mixed into milkshakes after exercise. At dawn, we’d run along the South Bank together, past the Oxo Building, Globe Theatre and Southwark Cathedral, across London Bridge, and back the other way through the City, completing a two-mile loop around the Thames. But, of course, none of that could help me at all, and eventually I would be considered a lost cause.

What would I say to all of those companions who tried their very best to help me back then? Before I met them, long before my testimony of faith, my previous companions had merely prescribed alcohol to overcome my predicament: to numb and drown out all that I was. Perhaps that would have been fine had my closest friend, a decade older than me, not been a violent alcoholic with problems of his own. I guess we got on because he was as gaunt as me.

Everyone who came into contact with me would have been justified in thinking there was something wrong with me. I should have been the first to know, but I had lived with it for the whole of my life by then, so had just got used to it. Misfit. Loser. Freak. Too shy for my own good. And I had fully imbibed the notion that I was just lazy so that was how I saw myself. It was all in my power to change: I just didn’t want to. And thus did I loathe myself completely.

But of course I would eventually learn that my body had been starved of testosterone my entire life. Testosterone is required for brain development and function, long before adolescence. It affects muscle mass, bone density and cardiovascular health. It has a significant impact on behavioural traits: mood, motivation, confidence, competitiveness, positivity, attention, memory. Indeed, it is responsible for nearly everything I lacked and struggled with. It turned out the intense blues and lack of motivation were not a choice, after all.

Probably, if I could go back, I would still apologise. For them having to put up with me. For being such a burden on our friendships, beyond what was normal or expected. They really were quite extraordinary, in embracing me, where others had rejected me completely. I suppose that is the effect of faith brought to life, as in that prophetic saying, “None of you truly believes until he wants for his brother what he wants for himself.” Of course, I would say thank you. Jazakallah khair. Thanks, so much, for trying.

Just coping

In the research into emotional regulation associated with this condition — extremely limited though it is — studies identify an increased tendency for passive coping amongst men with that extra chromosome.

By passive coping, they mean behaviour such as isolating oneself from others, worrying about the past, taking refuge in fantasies, avoiding social interactions and engaging in self-blame.

Other strategies include the expression of emotions, resulting in emotional outbursts or explosions of anger; avoidance, meaning denying, minimising or avoiding dealing directly with causes of stress; and seeking distraction to deescalate heightened stress.

I am sure some longterm readers of my blog had already identified many of these traits in me, long before I opened up about life with this condition. Indeed, my blog could serve as a treasure-trove for the clinician concerned with studying its psychological impact.

Isolating myself? Check. I’ve worked from home for a decade, after all. If I socialise, it’s with a small circle of friends, and most likely one-to-one. Worrying about the past? Check. I dwell on the past an awful lot, it’s true. Taking refuge in fantasies? The elephant in the room perhaps. I wrote my first novel at nineteen in an effort to overcome my morass, giving birth to a lifetime of writing.

The reality is that prior to the past year, when I began mining research papers to better understand the effect of this condition on me, prompted by a conversation with a friend, I hadn’t really linked this disorder to my life experience at all. Many of the posts I have penned over the past fifteen years I would have to reinterpret today in light of my increased understanding of self.

In truth, I imbibed everyone else’s narrative about my life to such an extent that I wasn’t able to link this disorder to my experiences at all. As family we were too busy dealing with the impact of my journey of faith to explore the emotional distress I carried with me as a result of growing up with the condition. Actually, I’ve never discussed this diagnosis with my wider family.

The same applies to my sudden and rushed marriage, once opposed. That too was framed as religious fanaticism, and not as a troubled young man seeking a soulmate and life-partner. As for my search for employment: it seems many with this chromosome disorder struggle with poor educational attainment and low socioeconomic status as a consequence.

Although the worst effects of this condition are behind me — marriage really was my redemption — I continue to struggle with aspects of emotional regulation. I still avoid social gatherings, unless in the company of trusted friends. I still fail at idle chit-chat, falling back either to silence or to reprise my role as jester.

I still consider it a burden to carry. My mind frequently feels numb. My intellect feels stunted. I often feel empty. I wish this wasn’t what I am, or what I had been assigned — although I accept it as my qadar and rizq. I wish I could overcome it. As it is, I’m just coping. Just about, anyway.

Experiences

Two experiences have impacted me recently. The first of them, watching our kids confidently taking on the high ropes treetop challenge at Go Ape. Actually, it was the crowd of ten year-olds in the slot before them which knocked me back: their bold tenacity, clambering over those obstacles high in the trees, their energetic enthusiasm, and their self-assurance as they yelled encouragement to one another. They seemed so well-rounded for their age. Naturally, that had me reflecting on my own childhood, because I wasn’t like that at all. I was so timid and anxious, rarely found amidst crowds, with barely a word on my tongue.

The other of those experiences, yesterday, when friends came over. Their eldest, whom I have known since he was a toddler, is now sixteen and attends sixth-form college. As he sat quietly in a corner reading a book, I couldn’t help observing how mature he has become, both physically and emotionally. That was equally true of his younger brother. Looking at them, we could legitimately call them “young men”. As for me at that age: no, I was just a boy, so immature. It’s no surprise, really, that I was a laughingstock back then. I couldn’t see myself as I do now, glancing at old photos in horror.

Raising children has opened my eyes to a lot of things. Sometimes I am in awe of our children at just how grownup they often are, and how articulate and confident. Again, I had none of that. But sometimes I am also struck by how mean they can be, and how compulsively silly. In the car the other day, I was surprised when our daughter referred to a boy in her class as “just a mute” who never says a thing. I guess the same would have been said about me. As for their perpetual mockery of others — each other, parents, classmates — they just can’t help it. It just flows out of them. And so I realise, yes, those we encountered back then who did the same probably weren’t malicious: it was just their happy humour.

I always feel like I’m running late with this thing we call parenting. My parents would have been in their early twenties when they had their first child. We’re a decade behind, and so all of that making sense of our youth has occurred late too. There’s a gap of thirty years between those experiences and helping our children through their own version of those moments. The actions of parents and teachers makes more sense now that we walk in those shoes. So it is that we become more forgiving of all we encountered along the way.

As in that famous family joke which recalls that I was always late, I have lived my entire life this way. It’s true: I have always been running late, so immature, late to make sense of anything. If I have started to grow up more over the last few years, it could be attributed to being a parent. Equally, it could be attributed to medical interventions, addressing those pervasive deficits head-on. It could be a bit of both, combined with simply reaching the hallowed middle-age. There’s nothing I can do about all that led me to this point; I can’t go back and fix anything, other than to say sorry to those I wound up along the way. All I can do at this point is help our own children to live better lives, and to try to live my own life better from here on.

I suppose this is the value of experiences — even negative ones — in giving us impetus to change.

Interruption

Why do I write so much? Honestly, because in conversation, I can’t get a word in edgeways. It seems I still have that deficit in spoken language, which has always been a source of immense frustration. I know I speak slowly, my expression quite monotonous. I am slow to formulate what I want to say too, and by the time I have found the words with which to bring ideas to life, the conversation has already moved on.

Continue reading “Interruption”

Powerless

Mostly I’m unconcerned that I have no influence on the world around me. I can function perfectly well in most situations, especially as my day to day life does not demand significant interaction with others. But every now and then, when attempting to assert myself, I feel I have no control at all, which causes intense frustration. I might as well be a stone. Perhaps that’s all I am. And, right now, I’m sinking to the bottom of the lake. I feel powerless. I always have.

Breadcrumbs

I realise now that even if I wanted to remain anonymous, it is impossible, for I have left too many breadcrumbs behind me. Every decision, however long ago, to publish under my name, whether in print or online, points back to me. So I am found out. Not that it was ever really a secret; I’m not hiding, I’m just trying to tame my ego. But, alas, I am already revealed.

For real

I can’t really blame those who wonder if I’m for real. I doubt my own reality sometimes. It’s a bit too much to take in. They’re not the first to react that way. But, as far as I know, this is as real as it gets.

Some disadvantage

The chromosome disorder I have been bestowed doesn’t manifest itself as a critical condition, seriously detrimental to one’s day to day life, as we’d consider the likes of cystic fibrosis or spina bifida. In my opinion, the impact of my condition is mostly psychological.

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A face despised

I once tried to delete my face. It was the spring of 1997, during my second term at university. My face wasn’t the cause of my actions directly, but it became the target of my unrestrained rage. The cause was my decision to unapologise to a friend I had earlier apologised to at length, telling them now that I was not sorry and that everything was their fault. As impulsive and emotionally immature as I was, I wrote this down in the form of a letter, which I then trust into their hands in the university library.

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Who am I?

We are all composed of multiple components, our sense of self informed by so many experiences in our formative years. Ask the question, “Who am I?” of others and from each you will get completely different answers. Some will answer that from a class perspective, some with religion in mind, still others considering ethnicity. A few might speak of my character, or some minor achievement. Most, I suspect, would simply shrug their shoulders.

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To understand

At university, I had a flatmate who once lamented, “Even you’re more popular than me.” An inadvertent slip of the tongue, which revealed a bit too much about how I was perceived by others. But it was okay, because I was used to that.

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My place

In my youth, there were many who decided I had to be put in my place. At university, one was my so-called brother in faith, a fearless activist and latterly failed politician, whose intimidation culminated in me being pinned to the wall by my neck. My crime, perhaps, to have been a white convert, all too reminiscent of other white converts he had encountered previously, or to have been too shy and timid to satisfy his macho rendition of faith, or simply because he had heard the rumours about me, whatever they were.

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More content

I grow more content in my face and form as I age. Old photos, I will neither share nor spend any time looking at, for they are too horrific to me. Perhaps I’m overly harsh with myself, but I was the one who had to live with both.

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No mistake

In scientific terms, the chromosome disorder I have been bestowed with is a mistake — an error in cell division at conception. In these terms, certainly it is a deviation from the norm. But an anomaly? Hardly.

Blessed is He in whose hand is dominion, and He is over all things competent — who created death and life to test you as to which of you is best in deeds — and He is the exalted in might, forgiving.

Quran 67:1-2

In truth, there are no errors. All that exists and all that happens is by design. This difference was no mistake. Though at times I have been known to wonder, “Why me?” I know this was decreed for me. So too those trials and tests at its height.

To exist

An acquaintance I have known only online for fifteen years wonders if I really exist. A legitimate gripe, I’m sure, for I am the type who hides behind his keyboard, never to show his face or let his voice be heard. He has invited me to call him more than once, but I have always succumbed to my shy cowardice, terrified that anyone else should hear my horrible voice, which I still abhor. Likewise, he has tried to arrange a meet-up a few times. No wonder he doubts that I’m a real person.

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