folio

I have been reading a lot about the psychosocial impact of the non-inherited genetic condition I find myself bestowed with and its influence on quality of life. Though the phenotype caused by that extra chromosome is highly variable, numerous studies have demonstrated that the condition is often associated with lower socioeconomic status, in terms of income, employment, education and relationships.

If I measure myself not against my siblings or my peers, but against the typical outcomes of those with this condition, I might then conclude that from a relative perspective, I am doing better than might have been expected. We have sufficient income to cover our needs, debt free. I have a steady job, undertaking a role I enjoy. I completed education at post-graduate level. I have a loving wife and children. All of this, success by any measure, a credit to my faith and upbringing.

No matter how much I struggled in school — deficits in comprehension, memory, language processing and executive functioning then understood as acute laziness — failure wasn’t an option given the high expectations of my family. Though it wasn’t helpful to my self-esteem, it nevertheless pushed me to eventually try my best to prove everyone wrong. I would probably have benefitted from being steered in a creative direction, making better use of my strengths, but no matter: I survived.

But education is one thing, social difficulties something else entirely. Boys with the condition are often described as being shy, sensitive, passive and reserved. In adolescence, these personality traits may lead to adaption and behavioural problems, all the more pronounced in early adulthood. Certainly, that was my experience, those teenage years a real struggle from a social and psychological point of view, compounded by my problematic physical self-image.

Though it introduced new challenges, my adoption of the Muslim faith at twenty-one really was like a lifeboat, keeping me afloat and providing the guidance I needed to navigate those choppy waters. The structured routine of a daily life now punctuated with prayers, governed by mindfulness of right and wrong, halal and haram, provided new meaning and direction to my life. In truth, I needed the framework of a practical faith to bring it order.

All of this, the unceasing mercy of the Creator of all things. Looking back on the series of events leading up to my diagnosis in my late twenties, I just have to say, Alhamdulilah! The experience of the warm and endearing fraternity of the faithful. The love and care of my new companions, young and old. The manner in which I was introduced to my beloved, and our union in marriage. Her faith, despite the trials and tests of life, standing with me regardless.

If the condition I was bestowed with brought with it deficits and difficulties, they have been more than compensated for by this practical faith of ours, granting us great ease, despite ourselves. Glory be to the One in whose hand is my soul.