Introducing Mindfulness at a HIV Charity

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By Wake Up London facilitator, Jess Stein

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Earlier this year HIV charity Positively UK approached Wake Up London and asked us to facilitate some introductory mindfulness sessions at their London offices. Positively UK is a positive organisation in every sense of the word. Its aim is to provide practical and emotional support for people living with HIV so that their lives can be as fulfilling as possible.

Advances in medical treatment mean that an HIV diagnosis is no longer a death sentence. People who have access to the right medication and take it regularly can now live long, healthy lives and we were inspired by the healthy, glowing, HIV positive people that we met. However, despite these advances the challenges of living with an HIV diagnosis remain huge. The people we met talked about the anxiety of living in a body that could become sick at any time and about the shame and stigma that they experienced both internally and externally in society.

posuklogoFacilitators from Wake Up London came forward to assist in this exciting new venture, including myself, Joe Holtaway, Luz Casto, Thomas Balbach and Anna Hasemann. We planned to offer the sessions very much along the same lines as our Afternoons of Mindfulness where the facilitators share the teachings as fellow pupils rather than as teachers. Positively UK is originally a peer support organisation so it made sense to work in this way with them too. However on the first rainy Monday in May the group that sat down together didn’t exactly look like peers. We had anticipated working with a mixed sex group of people around our age. However, the people who had been drawn to the group were almost exclusively male and at least a decade older than all of the Wake Up volunteers.

One man found the silence so uncomfortable that he left the room and when we opened our eyes it was to several bemused faces and a lot of questions.

It was daunting to sit in front of people with so much life experience and try to explain our version of mindfulness without sounding sentimental or patronising. The initial plan had been to trust that the practices would speak for themselves and that we would only need to offer minimal explanation. However, in the first five minute sitting that plan seemed a little naïve. One man found the silence so uncomfortable that he left the room and when we opened our eyes it was to several bemused faces and a lot of questions.

‘What should I be doing when I’m meditating?’ ‘This mindfulness thing – can I buy it in a shop?’ ‘Why does my back hurt so much?’ and ‘Why would I want to do that again?!’. It wasn’t exactly the reception we had hoped for and we quickly realised that we would have to do more to make sense of the practices. We thought on our feet and replaced the next meditation with a relaxation exercise and the final sharing with a question and answer session and the practices must have hit their mark in the end because the evening ended with a spontaneous round of applause.

We made it our policy to share practices that we really loved and had been useful to us in our lives. This meant that the sessions were quite easy and stress free to plan and we could share them with authenticity.

Things flowed more easily after that first week but every session was a learning curve. The man who left the room in the first five minutes decided that meditation wasn’t for him and never came back and we had to accept that not all practices work for everyone all of the time. We made it our policy to share practices that we really loved and had been useful to us in our lives. This meant that the sessions were quite easy and stress free to plan and we could share them with authenticity. In the first few weeks we drew on memories of when we had first started meditating ourselves and offered practices such as mindfulness of breathing, of the body and of sounds to create an anchor which people could return to during more challenging practices.

We offered homework at the end of every session and this brought us some lovely and funny insights into each other’s lives. One member told of trying to work out how to set the timer on his phone so that he could complete our ‘3 minute meditation challenge’ and being so baffled by the technology that his three minutes were up before he’d even had a chance to sit down. Other people talked about noticing becoming more aware of the kindness of strangers and sometimes the most simple feedback was the most gratifying; a gentle snore during relaxation and a big smile after mindful movement. As the sessions progressed we focused on mindful relationships with others and with ourselves.

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It was in sharing loving kindness practices that the differences between the Wake Up volunteers and the Positively UK participants started to drop away. One week we used a practice at both the Afternoon of Mindfulness and at Positively UK where we asked people to conjure up positive memories and to send out the feelings associated with those memories to themselves and to the whole world. The themes that came up were universal.

The memories evoked were of the natural world and the innocence of childhood love and the feelings that went with them were universally ‘love’ ‘warmth’ ‘comfort’ ‘freedom’ ‘safety’. It was a lovely reminder that our basic human understanding of what it means to be happy cuts through all differences in background or life experience. The group remained small throughout the six weeks of our course but this allowed us to relax more and more in each other’s company.

By the last session it felt like a really safe and precious practice space that we were all sorry to say goodbye to.

By the last session it felt like a really safe and precious practice space that we were all sorry to say goodbye to.
It felt as though the bubble of peace that is created each week at the Wake Up Afternoons of Mindfulness had floated off and found a new home with Positively UK and hopefully with more projects like this we can do the same in all sorts of other places.

This article originally appeared on Wake Up London’s blog

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3 COMMENTS

  1. Thank you for this well-written and compassionate article. Your articulate description of your experience and the process that occurred within the group and you as facilitators was insightful and real. This helped me to get a sense of what it was you offered. Such a gift!

    On the topic of HIV, in the United States, there is a significant spike in the number of people diagnosed with HIV. Particularly young men ages 13 to mid-twenties–teens/young adults. This is sad to me especially when so much has been done to bring awareness to the virus and its effects since it escalated to a pandemic several decades ago. This is also the fact that many young people today were not around to feel the impact of so many people they love dying from HIV and AIDS. This was the case for other generations, particularly in the gay community and allies, in the eighties and nineties.

    It is so true about shame and the effects of shame on the body/mind. Shame, I believe, is a secret killer that robs its victims of the capacity to love themselves, receive love, reach for goodness, and fill their hearts with goodness.

    Metta for oneself may be the best place to start. Even though metta for oneself may be the most challenging. Sharing metta with the person sitting next to you, silently wishing them health, safety, happiness, and peace, is also another way to go.

    Your article and the acts you wrote about shared the spirit of metta/maitri/loving-kindness beautifully. Again, thank you.

  2. I am an HIV / AIDS Advocate and a person living with AIDS in Minnesota (USA). I practice and attempt to walk the Dharma road.
    I would very much like to speak with you about the mechanics of the group in Positively UK – my goal would be to implement a similar experience in the Positive Community in Minnesota.

    • Hi David, lovely to hear your appreciation and that you’re interested in setting up something similar. Would you like to email me your thoughts? I’ll do my best to answer them. Jess xx

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