At the Edge with AIDS

1997 came, this was the year I had been predicted to die. I was getting ready.

To really give up all fear

you have to be prepared

to also give up all hope.

Being without hope is the greatest fear

but being without fear is the greatest hope.

When the pain comes

don’t wish for pleasure

when the pleasure comes

don’t dwell on the pain.

Know yourself to be forever

in the mother-father.

When the feeling is absent

from your point of knowledge

strive towards it with devoted heart.

When the feeling is present,

every moment is worship.

(February 1997)

Death has been called the greatest teacher. Pagans know that in the mysteries of death lie the deepest secrets and greatest freedoms – the Celtic wheel of the year honours death annually at Samhain (Halloween), providing the prompt to explore those mysteries. In Buddhism too, facing mortality, surrendering to emptiness, is recognised as the route to wisdom. As 1997 started I knew this was the year that my apparent surrender and state of acceptance was going to be thoroughly tested. My partner had been hospitalised with meningitis, KS lesions were spreading around my body, especially centred on my throat and around my groin, I had daily diarrhoea and was weakening dramatically. My t-cell count was rapidly approaching single figures.

Despite this debilitated state Pierre and I decided to have a holiday, hoping to enjoy some inner peace and recharge in hot sunshine. We went with two friends, Diane and Martin, to the island of Ko Pan Gan in Thailand, where we settled for a few weeks of hammock time, swims and sunbathing. I set a firm intention for the trip, –

“to remember that our essential nature is beyond disease, that harmony exists in us and that every moment is to be enjoyed and celebrated, negativity and fear recognised and set aside.”

Our companions rushed around a lot during the week they were with us, sightseeing, snorkelling, and visiting bars. We got to share some beautiful moments with them as well, on the beach under the stars, reflecting on life and death. Diane had been my friend since teenage years at school, so the closeness we shared in this difficult time was very important to me and enriching to my heart. Pierre and I were content to settle into a quieter routine when they had gone, moving to a nice, tranquil beach hut location where there were two hammocks for us to take our repose in. My reading material was mainly Buddhist teachings on emptiness, and I used this time to face my fears and live simply in the moment, becoming free of thought and desire. We smoked lovely Thai grass and enjoyed daily highs of spiritual inspiration, but I was frequently brought back to earth by physical ailments and discomfort. By the end of the time there I found I was gradually becoming less prone to mood swings high and low, and able to move towards a place of more acceptance of my lot.

In ‘Facing the Restless Mind’, a book by Swami Adiswarananda, I read: ‘Unrestrained desires and unbridled gratification of libidinal urges only lead to disintegration and destruction‘. Did this describe HIV?

HIV amongst gay men certainly seemed to be related to unbridled sexuality, to our sudden liberation from the closet after a thousand years of persecution, resulting for some in an extremity of sexual indulgence that just was not possible previously. Also HIV seemed to me perhaps related to gay men raising sexual experience higher than heart connection, and I questioned whether it is actually a disease of the soul rather than simply of the body. Was I close to death because I had failed to listen to my soul, to incarnate it fully on the planet, having instead been driven by desires and held back by unexamined aversions and fears? Was the breakdown we called AIDS really the result of living from the constant demands of the ego rather than the heart-centred wishes of the divine soul? Until I was 30 I had never longed in my heart to be connected and uplifted into communion with the divine – but since that urge had grown in me I had become acquainted with vast expanded feelings of love, and was frequently in delighted states of bliss. I felt I knew something of my soul now, it seemed that I was so close to death because I had ignored her call for so long.

Another angle of thought on the metaphysical layers of HIV infection that I developed came from seeking the connection between the two groups most affected by the pandemic: gay men in the western world and Africans (of any sexuality). Essentially here we have the two groups who have been the most virulently, hatefully mistreated, for centuries, by the dominance of the white Caucasian patriarchal culture. We are the ones whose natural spirit and self expression, whose very liberty, has been the most suppressed. We are therefore the ones least invested in the money fixated, capitalist society that is greedily eating up the resources of our planet and treating humans as just another resource to be used and abused, and therefore the best candidates for finding a way out of the mess humanity has created, for getting in touch with the bigger picture and restoring humanity to its true path in communion with nature, not dominating her.

The first step is to learn to love ourselves, and at a time when there were no effective treatments to halt the devastating progress of AIDS in our bodies, self-love seemed the best option. Gay men around the world who were affected by HIV found hope and healing through this message, that was offered first by Louise Hay through the work she did with positive men in the USA from the late 1980s. Her message stood in sharp contrast to those coming out of the mouths of prominent figures in that decade, such as American politician Pat Buchanan who said in 1983 that AIDS was “nature’s revenge on gay men” or Manchester police chief James Anderton who said those with the disease were “swirling around in a human cesspool of their own making.” On the other hand, as Mark S. King puts it in his blog MyFabulousDisease, Hay’s “message of self-love and unconditional acceptance—of our lives and other people—resonated like a beacon to the frightened gay men of Los Angeles.”

I was moving into deeper acceptance of my fate, just in time. I went to meet the female vicar of the parish church in Stowupland, where the baby me had been christened, to arrange my funeral. I was disappointed however to find that for her God was someone separate that she had ‘faith’ in, not a lived mystical reality as I was experiencing it. I got more excited by a telephone chat with a clairvoyant, who told me that my soul had existed since pre-Atlantean times, when the Gateway to Spirit (ie death) was open and could be crossed at will. She said that I had lived so many times that death held no fear for me, and that in fact in this current life I might still rediscover more of my ancient inheritance.

As my physical health deteriorated sharply I found myself drawn back to the religion of my childhood, in the form of medieval mysticism that echoed the marvellous teachings from the east that had come to mean so much to me. 14th century work The Cloud of Unknowing encouraged me to be content with my lot, not to let my mind focus on whether I would live or die, nor to puzzle over intellectual notions of the Divine, but instead to simply know ‘him’ by love. Finding such a message in a Christian context helped reshape my understanding of the Abrahamic religions. The unknown author of this mystical text also guided me on how to navigate the times when sickness filled my awareness, pushing out all thoughts of blessed holiness. He warned that the grace from the divine cannot be constant, it is…

“withdrawn from the contemplative for a number of reasons. Sometimes it is in order that he should not take it too much for granted, and think that in general it lies in his own power to have it as and when he likes. Such presumption is pride. Whenever the feeling of grace is withdrawn, pride is always the cause; not necessarily actual pride, but potential pride that would have arisen if the feeling had not been withdrawn.”

Medieval mystic Meister Eckhart, known as he “from whom God hid nothing”, also advised not to be constantly focussed on God:

“No-one can or should engage in contemplation all the time, for active lie is to be a respite from contemplation.”

I was inspired to find Mother Julian of Norwich writing of Jesus as the Mother God back in the 14-15th century, and was glad to absorb her mantra that:

” all shall be well, and all shall be well, and all manner of thing shall be well.”

For a couple of months after the sunshine holiday I struggled with worsening symptoms and weakness, when things got really intense I found the most effective mantra in my head to be the Jesus Prayer of the Orthodox Christian Church: “Lord Jesus Christ, have mercy on me”. I felt I was close to Truth, to God, to liberation of some kind but that coming close to death was necessary in order to get there. I asked, “Does it have to be that way? Can the Light give me sufficient healing to spend some time in divine service before I depart?”

In May I landed in the Thomas Macaulay ward of Chelsea and Westminster hospital with pneumonia (pcp). As I had previously shown an allergic reaction to septrin, the best treatment for the pcp, I was given instead massive doses of antibiotics which did not help at all. After a week there, during which friends came by with long faces assuming they were seeing me alive for the last time, I was even more ill than when I had been admitted. The medics switched me on to the septrin, my body handled it after all and a week later the pcp was abating.

I can not remember thinking about my own death while in the hospital ward, but in my restless nights I would often sense my spirit moving and mingling with other spirits – dead people whose soul energy was apparently still in the hospital. I could ‘see’ them walking around, looking for a release from the earth plane. I wondered if this is what happens to atheists when they die – so shocked to find their sense of self existing still after leaving the body, do they cling to the earth plane, afraid to venture forth towards heaven, especially if they think they might end up in hell?

My journals from the summer and autumn of 1997 reveal that I was very glad to be alive after this brush with the other side. Far from letting the physical deterioration defeat me, I was out on the road with Pierre, staying in tranquil settings in the countryside in Surrey and Cornwall, then setting off for a month’s driving holiday around France. We spent what money we had to have a comfortable trip, staying in hotels in beautiful isolated locations around the country. We were two skeletons, dressed in brightly coloured hippie clothes from Thailand, barely able to eat the rich French food served up in the hotel restaurants, but glad to be seeing wonderful places – volcanic landscapes, mountains, forests, beaches – and glad every evening to settle into a comfortable room with a few smokes to help us relax and commune.

After my hospitalisation it was suggested I sign up for a trial of one of the new protease inhibitor drugs that were becoming available. Bizarrely, although my cd4 count was now a mere 3, my viral load (the amount of active virus in the blood) remained extremely low, and I did not meet the entry requirements for the trial. So I was travelling around France, driving every day, aching and sore, facing the prospect that any simple infection might kill me, but determined to go forward and explore. Despite the discomfort I was rising to the challenge and feeling elated, thrilled to be travelling, glad to be alive. I called my 3 t-cells Mary, Mungo and Midge, after a favourite cartoon from my childhood.

Heaven can only exist where we are. It cannot be found by searching distant galaxies or dimensions, it is only ever present in the now, the current moment defined in time and space. Heaven is eternal, it is the universe, the totality of which we are part and without which we have no being, no existence…. Heaven is very quiet. A noisy mind cannot know heaven’s bliss nor can a mind obsessed with itself. To know heaven we must turn our mind outward in compassion and inward in contemplation. We must train the mind as a tool to align our body, ego, soul and spirit, and we will find the noblest thing we can do with our mind is to keep it trained on god, an ever-humble devotion that brings us limitless bounties of joy and security, the ability to pass through life’s suffering without too much concern. To know heaven we must be detached from the world, but still involved in it. For while heaven is almost silent, that silence has to be found in the middle of the noisy madness that is life.” (31 August 97, day of Princess Diana’s death)

I lived day to day through the winter of 1997-8, waiting to see what would happen next, keeping my strength boosted by one to one yoga sessions at home with a lovely lady teacher, Katinka (whom I would bump into at Osho’s ashram in Pune several years later!). What happened was that the KS spread, nasty lesions multiplying in my lungs and throat. My mood was fairly good until February when fevers and pains took over and knocked me very low. The chances of surviving much longer were not good, but the offer of treatment with a protease inhibitor came up again, without needing to qualify for a trial this time. On March 11th, 1998 I began to take the drugs, and by the end of the month I was already recording in my journal how much better I was starting to feel. By May I was daring to dream about a future, something I had not done for some years. Pierre and I commemorated returning health by working to make our garden into a small tranquil zen paradise, to which we invited friends to celebrate World Earth Healing Day with a barbeque. A calmness and peace had settled upon me, I felt rewarded for the spiritual focus I had chosen over the last three years, and quietly delighted to be alive. A few months later this delight was to expand like never before and send me flying.

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