Flicking through some Instagram stories last week, one stopped me dead in my tracks. I found out that the health services had failed to pass on to my neighbour crucial information related to scans for cancer. She died last year. My first emotion was anger at the mistakes that may have contributed to the loss of this amazing woman. My second, minutes later, was guilt. How could I have gotten away with complete remission, when others were failed by the same system designed to help them. Every day since I’ve been thinking about this, getting depressed and irritable, and as yet am unable to untangle the mess of feelings in my head. I’ve had these feelings before, and recognise them as “survivor’s guilt”.
I think my first encounter with survivor’s guilt was in the 1980s, when many friends became ill with HIV, and some died. How do you cope with seeing the health of so many friends deteriorate, some rapidly, some slowly. Also knowing other people who had an endless succession of funerals to attend of friends, lovers, family. For me, if I’m being honest, alcohol played a part in numbing the pain and trauma of an endless 1980s news-cycle that demonised daily the LGBT community, creating moral panic and public disgust towards people who were just trying to exist, to love, and to be loved. In London, while doing my post-doc, I found a way to channel some of that guilt, through volunteering as a Buddy with the Terrance Higgins Trust (THT), but when my sister died I had to stop.
My second encounter with survivor’s guilt was after my parents both died from alcoholism while I was doing my PhD in the early 1990s. First my Dad, through alcohol-related disease, and then, while I was writing up in London, my Mum, who died of hypothermia in a snow storm because she was unable to open the front door of the house, because she had been drinking. My guilt then was having gotten out of Tongue, where I came from, avoiding much of the carnage and chaos wreaked by alcohol on friends and family. It is no exaggeration to say that at that time, few families were unaffected by injuries, psychoses and deaths caused by alcohol. It was epidemic. Yet somehow I had escaped, and survived. But that survival hid a lot of trauma and anxiety, masked by high-functioning abilities. And then at 33, my youngest sister died a few years after Mum, her body and mind ravished by the toxin. I coped by being self-destructive, wreaking my own chaos on David and close friends, yet somehow keeping it all together. The guilt of leaving those no longer standing became numbed through clubbing and risk-taking, even though people I knew through that were sometimes not so lucky, again losing the odds, to be never seen again.
It’s taken two decades to unravel the mess I’d become, and to slowly come to terms with the guilt experienced. Some was not my fault; I can’t control disease in other people, whether it is from a virus or from a narcotic. Some was my fault; my own actions causing hurt and unnecessary chaos in other people’s lives. Running and exercise has been a huge part of building a new life, to recast emotions on a more stable framework, one that I have control of. And to come to terms with guilt and grief that are sometime inseparable.
The anger and sadness from having these emotions thrust back to the fore has been unsettling. I feel this expansive and deep sense of helplessness at not being able to help others. And guilt. Guilt that the lump in my neck was seen as a red-flag, that within weeks I was told I had cancer, followed up by scans only a month later that showed that although
Stage 3, it had only locally spread. Guilt that the type of cancer I had was caused by HPV, and even though developed from a common and widespread STD, somehow still I was lucky enough to be diagnosed with a form of cancer whose treatment had a high success rate. Guilt that I was lucky to have started treatment a week before lockdown began, treatment that otherwise, like for many tens of thousands of other people, would have been delayed for months, leading to unimaginably worse outcomes. And finally guilt that I have survived, when others who, like my neighbour, were stronger, did not make it.
So maybe this is all I can do at the moment. Write to share my experiences as I’ve learned one thing from this blog - while it might feel very personal to me, I know it resonates more widely.
And Run. Run for myself, to keep the demons at bay and be the better person. And Run for others, to help find a treatment, maybe someday even a cure, so others need not feel the pain and the guilt in the future.
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