Integers, primes, squares, fractions, they are all there – numbers all the way up the counting scale and back down again. They exist all around us, these little friends of mine and they can boost you up or bring you down without a thought. Numbers for me are a whole other language to lose yourself in, to be comforted by and to view a world through their lenses whenever you get the chance. Well, you do if, like me, you are an HIV+ “Aspie”.
Having always felt a bit different (who doesn’t), numbers and structures, formulaic patterns and anything which could be broken down into constituent parts, repeated and re-built have always been a part of my life. These were the objects which with life could be understood, which gave sense to an otherwise nonsensical world and could be relied on always and forever like a lifelong lover. They could be played with (jumbling calculations in license plates and digital clocks was a favourite), they could be caressed (counting finger taps and bodily movements was a comfort) and they could spur you on to achieve the things you wanted to achieve with an unrivalled intensity. I never understood why I viewed the world in the way I did. You tend not to notice your own little obsessions and what they mean when you live with them everyday and they are normal to you.
I remember being diagnosed with HIV (“late” in early 2010 – I know this as it is defined by a number) and falling to a default position of my comfort in the numbers. The numbers would see me through. The numbers would guide me. The numbers would give me a marker of my condition and they would be adapted to help me live, of this I was sure. After all, an HIV diagnosis is shrouded in the calculation, analysis and interpretation of numbers – viral loads, CD4 counts, percentages, blood counts and on and on. Numbers would be the panacea of my HIV management and with them I would defeat it.
Slowly, however, things started to go wrong. Like a soured marriage, I began to resent these new numbers which defined me. These were numbers I was not familiar with and they were spoken of by people who I did not know; whose utter reliance on them above all else to define me and make decisions about me irked and hurt me to the very core. I could not feel comfortable with these new numbers which had usurped my familiar playful friends. I resented the fact that these numbers meant that I had to attend an inconvenient clinic at regular intervals not determined by me. In fact I resented everything about them. They made me jealous, they would not play by our previous rules and I was convinced they would ultimately hurt me. I began to hate these numbers. Numbers I could not control; numbers I could not change. An HIV diagnosis in the UK even has its own disease code (H1), which to my Aspie brain is a blue cold number.
Travelling through the first year or so of diagnosis, I could not escape from these numbers and they began to suffocate me. Not being able to forget any of the numerical details of my clinical condition, these numbers stalked me and taunted me and no matter how much I analysed and reconstructed them, they remained the same. Cold and harsh. Only having to look at clinic results and have them burned into my brain without even trying to remember them only made the situation worse. Ask anyone with a photographic memory and they will tell you that whilst occasionally fun, in times of stress it can become one of your worst enemies.
I hated the look on my doctor’s face when he was telling me that my numbers weren’t going in the right direction (CD4 was meant to go up on treatment) and I fell instantaneously out of love with percentages when they too decided to piss on my parade. I willed them, I made promises to them and I cried hot tears of anger and hatred only to apologise to them for my frustrations and to try and start afresh once more with these new strangers. And still they continued to fail me.
A year or so after diagnosis I paid for a private assessment of my psychological condition. I did not have any mental health issues or anything like that but I was determined to try and make sense of my place in the world – I was determined to discover the differences which had always been within me. An HIV diagnosis was to give me one thing and one thing alone – it opened a door to enable me to learn about myself in ways I had never contemplated before. It allowed me to accept myself.
I tentatively met with the private psychologist (interestingly enough also HIV positive!) who was to assess me and I strived to be open and to be honest, to trust and to accept. Receiving an Aspergers diagnosis as an adult is apparently a rare thing, with most diagnoses occurring in childhood. This is coupled with the fact that there are largely no services supporting adults with this condition. I was told mine was mild and that I had learnt to counteract the condition in the way I had structured and built my life, such as compensating for structure and routine on one hand with a sense of humour and openness around self discovery on the other. I learnt that my eidetic modality (photographic memory) was a “special skill”. No wonder I couldn’t get those numbers out of my head.
If only an 80’s-prime Tom Cruise was to be my constant companion a la Rain Man, maybe I would have felt differently!
Only after learning these things about myself was I able to find the weapon which I could now use to protect myself against the relentless barrage and continuing assault of these cold new numbers.
Much has been written about grief and HIV, whether it be actual grief involving death or grief for a life now believed to be gone and never the same again or a grief for a life which may not be achieved. I did not grieve for my HIV diagnosis or any of these things but I did grieve when I knew it was time to set free a lifelong lover. I choose to set those numbers free. I choose to give them up, to walk away and to no longer allow them to define my world. I embarked on a life of independence, of new discoveries of spontaneity and without an intensity of obsession which previously defined me.
I still relapse on occasion but largely the release of a previous way of life, of learning new ways of living has only been a positive experience for me. The fact that a few months after my light bulb moment a CD4 count of 200 nudged above 300 for the first time gave me a renewed will and I largely stopped taking an interest with a hope that, if I didn’t pressurise them, those numbers would achieve what they needed to achieve. I live in a new way now, I trust my body, I listen to my instincts and I no longer need the crutch I have lived with all my life. I can walk free and tall.
I sometimes see my old numerical friends in my mind’s eye ahead of me in the future, turning on occasion with an encouraging wink and still I choose to continue to tread my own path. I have learnt from those structures, those objects and those patterns which were once familiar to me only now I know that, as with all numbers, life can be perfect or imperfect and it can be positive or negative.
About the author: NotDownNotOut is a late twenties (sigh, not for much longer) Brit who was found by HIV in 2010 but began to learn more about himself than he did about HIV when he began a period of learning which has not stopped since. An HIV diagnosis swiftly followed by an adult Aspergers diagnosis made his head spin but determined to make sense of it all; he decided to try and make the room around him spin as well.
Regularly blogging on his experiences of HIV care in the UK, NotDownNotOut looks forward to the day when he has no more questions for the world or himself and can stop trying to take it all apart only to put it back together again just to find out how it works. Secretly he knows this day will never come - but we can all dream.