New year, and already I’m a month behind! Haven’t been to choir practice, didn’t make any resolutions and now, January, my daughter’s 16th and my birthday have passed, and I’m 47 yet still trying to grow up and find my place.
I started an e-course following Brene Brown, ‘the gifts of imperfection’, recommended by a good friend who suggested it would help me, as you can read, I struggle with negative self talk! What hit me initially was the quote ‘In the absence of love and belonging there is suffering.’ I get the need for love, but I’m still processing this belonging business. It has awoken a realization that I have never truly felt I have belonged and highlighted how much I hustle to fit in.
I know part of writing to/for A Girl Like Me was to ‘belong’, to feel less isolated, but I’m kind of confused as to where I sit within the HIV community? I am now officially a long term non progressor. I’m not always undetectable but consistently below 1,500 VL and steady CD4. I belong in the elite 5 % of natural suppressors! However ‘elitist’ is not a word that I feel comfortable with, I want to be with the crowd, and when PLWHIV react ‘wow that’s great’ it’s difficult for me to revel in it. I am working on it, embracing my uniqueness, I’m climbing the mountain and closer to the top, but still running for the caves.
2 years ago I demanded a second opinion as my specialist refused my request for ARV’s, I was convinced it was a funding issue and that my immune system was in danger of being inflamed. I had just completed training as a peer mentor for Positively UK, and learnt how ‘unusual’ I was. My reaction was I wanted to be the same, have the side effects, so I could join in the discussions about diarrhoea and adherence! Crazy, huh! Or just wanting to belong? My viral load increased as I thought/learnt more about how it would ‘inevitably’ after 12 years, that was the statistics. Then I did my own calculations, my own chart, and started to see how, when I could visualise the virus more healthily, I was healthier and that I could use the power of my mind, not to create a whirlpool to drown in destructive thoughts, but to heal myself.
I do this with meditation, I take time be mindful and have done so for 8 years. I know it helps, not just with HIV, but life, and self awareness, even if it is a slap of non belonging/suffering. I imagine sending light to my T helper cells as a daily practice, and when I read how the Berlin patient was cured I also started to send light to my bone marrow and stem cells! The latest research I read in December about pyroptosis got me very excited, but then extended my separateness’ as it seemed nobody on the HIV online forums was equally thrilled. I get that the words ‘a molecular mechanism that causes the death of most CD4 T cells, so that even if they have resisted infection by HIV they still suicide’ may not sound like sweet poetry. But to me it was self affirming music that sending light and love to my t cells was helping to stop the sacrifice, and that’s why it works.
So my February resolutions…continue with the e-course, go to choir practise, meditate, write to AGLM, and realise that where I truly belong is where I am, in the here and now, allowing my light to shine from within.