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.
Last modified: 2 December 2022