It’s been almost a tradition in HTU that January is the time to include a New Year resolution piece about exercise, diet or the benefits of healthy living. Thinking about how to put a new spin on gym regimes or a balanced diet, Gus Cairns started thinking of a number of people with HIV who’d done more than just try to be sensibly healthy. But what drives people to do extraordinary things?
Some HIV-positive people I know have pushed themselves to extremes of endurance, sought out experiences that didn’t just make living bearable but added to it. Several became marathon runners; I seem to have met a lot of mountain climbers; a lot of people, post-diagnosis, caught the travel bug and have taken themselves off, sometimes despite health warnings, to remote places, some even staying there.
Even in my case, since recovering from AIDS I’ve climbed Kilimanjaro, done a skydive on my 50th birthday, and trekked in Laos. Standard gap-year stuff if you’re 19, but with extra meaning as things I once thought I’d never live long enough to do.
We talked to a number of adventurers about why they did it.
“It’s a life-affirming thing – something I would never have done if I’d not been diagnosed with HIV. It means now death would be very inconvenient as I have so much to do!” Anthony Griffiths, employment adviser, 56*
“It gets me going. I lost my partner to HIV and have had to battle with depression but I know that if I start to get stuck, I plan and execute an adventure; it’s like kick-starting my life again.” Gareth Harries, social worker, 47
“The fact that I’ve pulled my life back round after having a CD4 count of 10 and being, I openly admit, suicidal, is mostly due to my travels (and some counselling). Just forget I’m HIV positive. I’m just a traveller, exploring the amazing world we have.” Nicola Brown, HIV project administrator, 45
“Few people understand why I climb. It’s about just being in the present moment. A moment when everything is perfectly in place in the universe, and I can die right then, and it would be okay.” Gregory Fowler, finance officer, 53
“My diagnosis turned diving from something I loved to something that connected me to the universe and levelled the playing field. It didn’t matter to the fish or the manta rays or the coral that I’m ‘pos’.” Tony Carthy, diving instructor, 49
(*Some names have been changed to protect anonymity.)
Paring life down to the basics
There were different shades of motivation in the people I talked to. For many, their adventures added richness to a mundane life. For others, especially people who already had busy lives, it was about simplicity: slimming things down to core existence.
Take Dr Jens van Roey, for instance. A wiry 58, he became HIV positive while working for the Belgian Overseas Development Agency in the Congo in 1987. He has worked in HIV and disability projects in Africa, did a stint at UNAIDS, where he was instrumental in getting the GIPA (Greater Involvement of People with AIDS) principles on to the international agenda, and then moved over to the pharmaceutical industry. Joining what was then a small biotech company called Tibotec, he found himself in charge of developing a drug called TMC120 (dapivirine) and negotiating its licensing as a candidate microbicide to the International Partnership for Microbicides.
A high achiever: someone who says that, despite three bouts of serious illness (disseminated TB, lymphoma and an osteoporosis-related fracture), “I’ve never said I’m not well.”
Many people have a list of places to see before they die, but it's like HIV gave me permission to work through the list. Nicola Brown, HIV project administrator
In case he’s sounding superhuman, though, he also recounts a recent experience that humbled him: “It was the only time I became [desperate]... night sweats, weakness, everything dark, giving up...” It turned out to be a side-effect of an osteoporosis drug. “It was a very valuable experience,” he says. “I learned what a bad doctor I’d probably been.”
For him, cycling is a release from a committed and busy life: last year he and his wife Bieke, an occupational therapist, took part in a cycle race for the over-55s up the 6273-foot Mont Ventoux in Provence, France (notorious as a killer stage in the Tour de France). They didn’t have to, but he and Bieke cycled there all the way from Belgium too, through a week of rain.
“You close the door on your normal life,” he says. “You go away with the minimum of clothes and materials.” It also strengthened his faith in other human beings, especially his wife (“I think when HIV comes into a partnership it either breaks it or strengthens it; well, it’s strengthened ours.”), and all the villagers who went out of their way to help them.
The rewards of adventure
Jens may not be your typical person with HIV, whoever that is. If there is a common denominator in our adventurers, what are they looking for? There’s probably not one single thing.
First, there’s the physical benefit, the documented rush of wellbeing you get during exertion when the endorphins, the body’s natural opiates, flood in.1
Some scientists have argued that so-called ‘runner’s high’ is due to conscious involvement in the task as well as pain-masking by endorphins.2 This may be the state of psychological wellbeing called ’flow’. We examined flow in Walking back to happiness in HTU 189. It means positive, focused attention – single-minded immersion in a task, the opposite of boredom and anxiety.
Climber extraordinaire Gregory Fowler describes it: “Climbing the steep glacier up 14,000-foot Mount Shasta, alone, in the middle of the night, just a slight breeze, the stars, and the crunching of my crampons and ice axe...”
Yet, as Greg’s own account hints, our adventurers are seeking more than flow. They’re after what have been called (no pun intended) ‘peak experiences’.
The peak of experience
These are experiences in which being alive acquires a special, intense meaning. In the past these might have been described in religious or transcendental terms. But the father of positive psychology, Abraham Maslow, in his 1960s book Religions, Values and Peak Experiences,3 separated such experiences from any cultural value ascribed to them. He thought them quite common and that never having had one might indicate repression or anxiety (distorted endorphin levels are found in anxiety disorder).
Peak experiences involve a feeling of completion or wellbeing, often accompanied by joy or awe. They may feel like the discovery of something of primal importance, though it may be hard to put into words. They can be the climax of a period of fun but may also break into times of misery. They may add a sense of individual purpose but may also involve a feeling of loss of individuality, of being at one with others or one’s surroundings.
I probably pushed the limits...doing a Fuzeon injection while tied to a rope team on a glacier is not very user-friendly. Gregory Fowles, finance officer
And they’re not fleeting; by definition, they leave a permanent positive effect on the individual.
They can be set off by meditation or prayer, exposure to beauty (of art, nature, music, whatever), perfect company, deep feelings of love... or psychedelic drugs.
A research area has sprung up in the last 20 years called neurotheology, based on the work of neurologists like Andrew Newberg4 and Vilayanur Ramachandran,5 who investigated whether the brain is innately prone to mystical experience. They hooked Buddhist monks up to EEG machines and put Carmelite nuns into MRI scanners to find out what bits of the brain light up during mystical experience.
What they discovered was a bit more complex than the popular press’s idea that they found the so-called ‘God neurons’ in our brains - but they did find areas in the brain’s frontal lobe that were particularly active during such experiences. Depending on your point of view, their work can be seen as either confirming the necessity of religious experience to man or debunking God as a by-product of evolution.
The scientist Antonio Damasio6 suggests that, as we grow up, experience acquired after we acquire language is turned into a self-concept, arranged in time as a ‘life story’ by the brain’s hippocampus, responsible for the formation of memory. But this leaves unfiled a whole body of earliest memories, primarily emotional, acquired before language. These will tend to consist of the most basic experiences of life: wonder at existence, attachment to others or fear of them, the first awareness of oneself as a distinct person, and so on. To Damasio, peak experiences are not revelation but recapitulation; they are memories of the wonder, bafflement and terror of being a little child.
He also maintains that a form of these experiences continue into adult life, where they form the basic unit of consciousness. The feeling of being someone at all, Damasio suggests, is caused by a constant back-and-forth switch of attention between your interior and your surroundings: you notice that what you perceive has an effect on you, and in sensing that effect you find out, from second to second, that you are a person who perceives things. This is backed up by strong evidence from studies of coma, epilepsy and ‘locked-in’ syndrome (where people are totally paralysed but conscious), and the differences between them. It may be why peak experiences feature a strong sense of connection between self and non-self.
Addicted to transcendence
So far so good: but the mention of intense feelings of love and psychedelic drugs reminds us that the search for peak experiences may not always lead us into safe and healthy activities.
There is a body of research, for instance, that tries to find out why, despite knowing the risks, people persist in having unsafe sex. A paper by James Martin, noting how religious ecstasy has become less common and maybe less admissible as a feeling in many modern societies, wonders if, in our sexualised society, mutual orgasm has come to replace it for some people – specifically, some gay men.7
“Although the leading western religions have long suppressed their mystical traditions,” comments the author, “the role of sexual experience in transcending individual selfhood...may be increasingly important in the secular West.”
Then there’s the thrill: as some of our adventurers attest, the meaning they get from pushing themselves to extraordinary experiences in beautiful places is because of the challenge or risk involved rather than in spite of it. Revelation usually happens in remote places but, for some other people, may occur in taboo places too.
A lot of gay men do talk of sex as being much more than a search for fleeting pleasure, but for some sort of transcendent experience.
In a Spanish paper that interviewed 20 gay men from Barcelona about their reasons for having unsafe sex,8 one man comments: “The feeling I was hoping for [was] not to find a meaning of life and all that, but to have an experience, which I wouldn’t call mystical, but a very concrete and strong experience – one which wakes you up when life sometimes seems very monotonous.”
Sometimes this is explicitly related to the danger of unsafe sex or to the feeling that only unprotected sex gets close to the ecstatic union wanted. “When I have had sexual relations without a condom it has been because I have felt very connected and have unusual affection towards that person,” one interviewee explained.
Martin’s paper9 comments that HIV prevention efforts usually treat the reasons people have unprotected sex as if they were themselves diseases or prevention ‘needs’ that required eradication or correction: recreational drug use, depression, low self-esteem, ignorance. This approach has to some extent been a success, with gay men making successful efforts to change sexual behaviour.
But, as UK behavioural researchers Jonathan Elford and Graham Hart entitle one paper, If HIV prevention works, why are rates of high-risk sexual behaviour increasing among MSM?10 They find that gay men tended to see condoms as an emergency strategy to stop the spread of HIV, not a long-term solution, and hoped at some point to recover feelings of union, abandon and ecstasy.
Even one of the writers of How to have Sex in an Epidemic,11the book that first used the term ‘safer sex’ in 1983, Dr Joseph Sonnabend, has commented to HTU that: “It may have been a mistake to not recognise in prevention material that condoms can be a significant impediment to a fulfilling sexual experience.”
Adventure and danger
We may seem to have strayed a long way from mountains and scuba diving. Yet pitting yourself against danger may also constitute part of what our adventurers are looking for too. This isn’t just about keeping fit, it’s about something bigger than physical health, and several of our adventurers have sailed close to the wind.
Gregory Fowler, for instance, started mountain climbing while he still had an AIDS-related illness, and blew what was supposed to be his last chance at therapy when, returning from ascending Kilimanjaro, he found all the Kaletra (lopinavir/ritonavir) capsules he’d kept back at base camp had fused into a solid mass. His viral load shot up, his CD4 cell count plummeted and his viral load is only undetectable on a combination of darunavir, Truvada (FTC and tenofovir), raltegravir and the now rarely used injectable fusion inhibitor T-20 (Fuzeon). He says, “Looking back, I probably pushed the limits of what I should have been doing.” Yet you sense an incorrigible spirit of defiance when he adds that “doing a Fuzeon injection while tied to a rope team on a glacier at 11,000 feet is not very user-friendly”.
Anthony Griffiths was diagnosed with acute HIV infection and put on a course of very early treatment. As soon as he came off the pills, he headed straight to the middle of China, partly because he wanted to go but felt he wouldn’t get in carrying drugs. There he nearly drowned in a Yellow River flood, came down with pneumonia and just managed, semi-delirious, to get himself back to Bangkok “where I knew they had some experience dealing with HIV”. It didn’t scare him off, and since stabilising his health he has taken himself off to Easter Island, amongst other places.
[I have] an ongoing battle with depression. I often feel ambivalent about life and start planning an adventure when I am trying to climb out of the pit of despair. Gareth Harries, social worker
Only Nicola Brown, of the people I interviewed, took time to emphasise the safety aspect of travel. “There are destinations I have on my ‘to do’ list which I’ve ruled out owing to the absence of nearby medical help,” she says, and she always travels in small group tours to avoid unwanted male attention. Even she, though, sees her travels as opportunities to push her limits: “I had a phobia of heights and conquered that by climbing, in Tunisia, the same tower Graham Chapman climbed in Monty Python’s The Life of Brian.”
She thinks her travelling keeps her healthy – “I gave up smoking in order to go trekking in Nepal.” But that’s not the main reason she goes. “Many people have a list of places to see before they die, but it’s like HIV gave me permission to work through the list.”
Tony Carthy says almost exactly the same thing: “Being diagnosed is a form of permission to really, really live life.”
It may seem far fetched to suggest that our adventurers are looking for something of the extreme experience that may lead other people to be infected with HIV in the first place. If it’s true, however, it may suggest a radically different approach to groups such as gay men who may see sex as the only thing that gives their life meaning. Maybe health advisers should be advising circuit-party boys to try trekking in the Himalayas rather than counselling. The idea that an addiction can only be cured if it’s replaced by something else just as meaningful to the individual is already a commonplace idea in drug rehabilitation.
Diagnosis and transformation
Certainly one thing our adventurers unanimously mentioned was that their activities were evidence of some sort of post-diagnosis personal transformation.
“Your HIV diagnosis is like bereavement,” says Anthony Griffiths. “You lose yourself in order to gain a new self.” Since his diagnosis he has not only travelled the world but, as someone who left school at 16 without even an ‘O’ level, he now has a BA and plans to do a PhD.
For Gareth Harries, adventures are therapy. Despite having chalked up a list of achievements including Kilimanjaro, the Inca Trail, the Exmoor Beast mountain bike race, working in a cheetah conservation project in Namibia, and cycling solo from Petra in Jordan to Mount Sinai in Egypt, he says that he has “an ongoing battle with the mental paralysis of depression. I often feel ambivalent about life [he lost a dearly loved partner to AIDS] and start planning an adventure when I am trying to climb out of a pit of despair.”
I ask if therefore adventure is a form of escape. “No,” he says, “because I know what I’m doing. I’m not trying to ignore my low self-esteem; I am trying to boost it with a sense of achievement.”
For others, their HIV diagnosis may lead to a renewed interest in helping others. Tony Carthy was captivated by scuba diving in 1992, moved to the Philippines (where there is currently an explosive HIV epidemic in young gay men) and qualified as an instructor in 2001. When diagnosed with HIV in 2008, he says that “My first thought was that I’d lose diving”, but instead he started working at a project for young gay men: “I am taking these newly diagnosed lads diving: it makes them feel ‘normal’ again.”
Nicola Brown has discovered value as a travel companion: “I always seem to end up being the ‘mother figure’ others confide in on these tours.”
Adventure and spirituality
But for all of them, there remains some deeper mystery to be searched for. There is a body of research about HIV diagnosis and spirituality but a lot of it is buried in theological journals or coloured by ‘born-again’ religiosity, often of the American kind.
Paul Clift, HIV patient representative at King’s College Hospital in south London, cautions on making too bold links between religion and personal change after diagnosis. He says: “Experiences like these have beneficial potential to the person who has them and makes sense of them, but we need research into how European and indeed African people apply their spiritual models to interpret them.”
But one study by respected US behaviourists12 questioned 147 people with HIV, including 13 who did in-depth qualitative interviews, about spiritual feelings. They found that 80 out of the 147 (54%) described themselves as having undergone a significantly positive ‘spiritual transformation’ since their diagnosis.
This was not, in general, a conversion to organised religion. Few were deeply involved in organised churches but many said they prayed or meditated. They tended to follow a journey from what subjects called an “empty life”, through depression – not necessarily tied to HIV diagnosis – through a period of intense self-reconstruction, and finally to a renewed, altruistic, interest in others.
One gay man said: “I came to a God of my own understanding. No one has a monopoly on God.”
Others might not call it God, but they know it when they experience it. I listen spellbound to an account by Anthony Griffiths of a night on Easter Island: “[We took] a long drive through the pitch black and once we got there we could see the great Moai statues as silhouettes against the starry sky – every star you could ever wish to see was picked out in white fire – and we were blundering around trying to see by the light of our mobile phones – and suddenly there were all these green eyes around us – they were wild horses...” his voice trails off. I can feel the wonder of it. That’s why people go on adventures.
- If you want to go on adventures, start by reading www.aidsmap.com/Travel/cat/1688/
- To find out about entry restrictions for people with HIV, visit http://hivtravel.org.
- Talk to your HIV clinic or your GP about where you want to go and what preparation is necessary, particularly if you’re going away somewhere unusual or for a long time. Vaccinations are sometimes needed, so make sure you think about these in plenty of time.
- Get kit appropriate for your trip; you can’t climb Kilimanjaro in trainers. A good backpack may save you a lifetime’s backache. Remember the travellers’ rule: “Take half the clothes you think you’ll need and twice the money”.
- Talk to your doctor about how to pack and keep your HIV medications safe, and if you should take any other medications, such as antimalarials. Pack rehydration salts and Imodium in case of diarrhoea, sunscreen, plasters, painkillers and, if necessary, insect repellent and mozzie-bite soother and antibiotics.
- Do take condoms; they can be hard to come by in the wild.
- Several insurance companies in the UK offer HIV-specific travel insurance, including www.insureandgo.com, www.world-first.co.uk, www.hivtravelinsurance.com and www.freedominsure.co.uk. They will ask you medical screening questions and you may have to pay a higher premium, especially if you have a low CD4 count, but don’t be tempted to scrimp with ‘normal’ travel insurance: it won’t pay out. Even they won’t insure everyone and you may have to pay through the nose if you’re not on treatment or have had a recent hospital admission.
- Boecker H et al. The Runner's High: Opioidergic Mechanisms in the Human Brain. Cerebral cortex 18(11): 2523-2531, 2008.
- Hinton E, Taylor S Does placebo response mediate runner's high? Percept Mot Skills 62(3): 789–90, 1986.
- Maslow A Religions, Values and Peak Experiences. Harmondsworth: Penguin Books, 1976.
- Newberg AB Principles of Neurotheology. Surrey: Ashgate, 2010. See also This is your brain on religion (www.npr.org/2010/12/15/132078267/neurotheology-where-religion-and-science-collide), 2010.
- Ramachandran VS, Blakeslee S Phantoms in the Brain: Probing the Mysteries of the Human Mind. New York: Harper Perennial, 1999.
- Damasio A The Feeling Of What Happens: Body, Emotion and the Making of Consciousness. London: Vintage, 2000.
- Martin JI Transcendence among gay men: implications for HIV prevention. Sexualities, 9:214-235, 2006.
- Fernández-Dávila P The non-sexual needs of men that motivate them to engage in high-risk sexual practices with other men. Forum for Qualitative Social Research 10(2) article 21, 2009.
- Martin, op. cit.
- Elford J, Hart G If HIV prevention works, why are rates of high-risk sexual behaviour increasing among MSM? AIDS Educ Prev. 15(4):294-308, 2003
- Berkowitz R, Callen M (medical adviser Sonnabend J) How to have Sex in an Epidemic: one approach. New York: Tower Press, 1983.
- Lutz F, Kremer H, Ironson G Being diagnosed with HIV as a trigger for spiritual transformation. Religions 2:398-409, 2011.