Part III… I am a healer….

November, like rosemary, is for remembrance….

I remember going to tea one Sunday at my dear friends JC and JD out in Merton Park…and walking around and around their garden trying to stop the hiccoughs….it was the little things the somehow wore you down…life’s trivia that broke your heart…the silly changes that dispirited you…

For me the next weeks and months are a blur of doctors, therapies, needles, anxieties and pretences all the time gradually feeling worse and worse. I lost all my hair…even my eyelashes and my skin went an oily leaden white – like a portrait of Elizabeth I. My gums were sore. My teeth became sensitive to hot and cold….and the toilet issues…I’d rather not even remember…

I went to all the treatments unaccompanied…

Looking back I acted as if I was my own healer…a miracle worker…someone who needed no one else…and whilst that carried me through the immediate crisis…it completely undermined my long term recovery…

By the autumn I had survived. But I wasn’t the person I had been before. I failed to take time off work to recover and the combined trauma of nearly dying and the treatments themselves took a huge toll. And the other stress from earlier losses and ill health I’d long masked now percolated back into my life…as if they were as yet matters unresolved. I was haunted by ghosts from the past and by past mistakes and past misjudgements. I lost nearly 20 pounds in weight. My employer didn’t encourage me to rest. Like one possessed I kept on with working…kept on being normal…kept on refusing to acknowledge that I had a life-changing experience…

But my life was changed.

There were long periods when unrelenting tiredness overwhelmed me but also prevented me from sleeping. And the recurrent outbreaks of shingles were much worse and much more frequent…

I found myself crying in the bathroom one morning because I’d seen my emaciated white body in the mirror. I told no one.

I soldiered-on…

Looking back from this safer distance the four years following-on from the cancer were a nightmare. I struggled with my job…falling further behind with routine work and slipping further and further into a deep depression. As I’d never had mental health issues…I never saw there was a problem….so I dismissed from consideration what was happening to me…or rather didn’t want to think about…and I was always so tired… I always felt alone… It was as if I was hermetically sealed inside a dead place…unable to reach out…unable to talk about my feelings…alone…

Some days I couldn’t wash or get out of bed. Like many in the depth of depression I learnt to hide many aspects of my behaviour, I learned to perform as if normal and most sadly I self-medicated on recreational drugs. This I later discovered is a common response to being depressed…alcohol or tablets…but I didn’t know…and actually the uppers only deepen the depression.

My weight loss continued…I pretended I was on a diet. My concentration was shot…long hours passed staring into space…blankly thinking about…I can’t even recall…The protease inhibitors caused unspeakable diarrhoea…my loss of intestine left me with this permanent remembrance. With the new drugs I also started to show signs of muscle wasting…about which I became self-conscious to the point of paranoia….

Eventually the struggle became unequal and I had to give up work…as it turned out they’d already given up on me…

Losing a career is traumatic at any time of life but in the blackness of depression, in your 50s and when you’ve profound underlying health issues…makes it harder. First I had to accept I’d never be able to work in the same manner again. It would kill me. Then I had to find something else to do…that felt impossible. And the impossibility of being worthwhile ate away at me…

I withdrew…and for several months I deliberately didn’t take my HIV medication.

I rebuked myself for failing so many friends when they were sick…I blamed myself…for most everything that went wrong…and when I didn’t sleep, as I usually didn’t, I was haunted by memories of the past, of Mark and all the others….

Then I considered a more permanent solution to my problems….taking a way out….without even understanding I was way into serious illness.

My mother, who had herself lived under the shadow of profound depression, was marvellous…never once critical of my worse stupidities and petty selfishness… nor my unreliability…as sometimes facing people was the thing I found hardest to do…I’ve never been lower or more desperate. So when mum had a devastating stroke that left her bed-ridden on the edge of life itself, for the rest of her life – my sense of guilt overwhelmed once more.

This time, thanks to Richard, I sought out professional help…but even in doing that you feel a shaming sense of having failed,…not managed… of being a lesser person.

I’ve not put this out here in the public domain for sympathy but to let others in depression know that mental health issues are as natural as the trauma that causes them. There is hope. There is recovery. The grass will again look green;the sky once more will be bluest blue. And you will feel well…and human….

I also wanted to put this painful stuff out here because it’s as easily forgotten as the dead themselves…survivors often bear unseen the wounds from their life experience…it merely manifests itself in different symptoms. And those symptoms of illness with which we are all most uncomfortable are those related to mental health…

These are the very ones which are often most difficult to empathise with but which are also the most isolating. Consequently most often their heavy burden is borne alone…like those shell-shocked soldiers of the Great War whose eccentric behaviours on the streets caused children much cruel hilarity when I was a little boy. How my mum slapped the back of my legs when she caught me poking fun at their uncontrolled antics…

Whilst my life turned inwards there were still friends who were dying…Michael Landers who had been our cleaner for almost ten years…finally died of complications from kidney problems…he was a lovely man…almost an innocent abroad in this wicked world… though he could be like most of us as wicked as he wanted in his time…he had Judy Garland played at his cremation…not ‘Somewhere Over the Rainbow’…but ‘Forget your troubles, come on get happy’…It was happily apt. Still others struggled with liver disease…there was now the possibility of transplant surgery for HIV survivors. Others suffered continuing weight loss and issues about eating…others never fully recovered their mental acuity after viral encephalitis…some developed HIV related kidney disease…steroids used to keep sufferers alive in the 1990s now caused hip knees and joint issues…prematurely ageing the survivors…out-living the plague had its very own problems….but as the public and political perception moved on with protease inhibitors turning HIV/AIDS from a killer into a manageable chronic infection…it was inconvenient to remember that there were those left behind who hadn’t died but whose health would never be the same, some who would not fully recover and some who were being, could be…and still are being… quietly forgotten…and to whom the changing patterns of treatment and resources have paid… and as yet pay….little or no account….

It’s they who’ve led me to write this series…for those whom we have forgotten still need help.

Many of you will recognise that the by-lines for this short series of remembrances come from the book of Exodus. That story of Moses and the Pharaoh…lives in my mind in the Technicolor camp of Cecil B DeMille’s Ten Commandments…that aside…the often over-looked aspect of this greatest of escapes from servitude…is the obligations that are placed upon the chosen people after they’ve been led from the house of Pharaoh and out of the land of Egypt…these other laws of Moses….leave a legacy of inter-generational responsibilities…which, if you like, are the price God commands for their survival….He places an obligation upon them neither to forget why they are here nor how they got here. They keep Passover…for in re-enacting that remembrance they learn to remember the shared obligation inherited from their forbears being led from bondage into the Promised Land…

And we are inheritors of that tradition of active remembrance….keeping faith with one another and caring for survivors is the small price we are asked to pay for freedom…

To be continued…next week….Fit for Purpose…HIV/AIDS…the forgotten disability.