‘What the f…We are now in 2008 and I was supposed to be dead. I never planned to live this long…’ For some people living with HIV there are many mixed emotions that arise as another year passes.
Often people with HIV have re-told personal stories, such as how a well intentioned doctor gave them 5 years or less to live when they were first diagnosed with HIV. Planning for the future seemed pointless. Having sold assets, travelled the world, attended the funeral of lovers and friends, they prepared for what they believed to be their own slow, painful and inevitable demise. The scene was set for an existence of one short day to the next.
Denial assisted some people with HIV. This coping style was an essential ingredient for keeping their lives together. However the disadvantage of denial is that people also ignore personal health monitoring and plans and lives fall apart with illness.
Other people with HIV tried to keep things as close to normal as possible, working until they couldn’t anymore. They enjoyed what they could from life. It was about quality not quantity, but still planning for the future was still very short term.
The history of Highly Active Anti-Retroviral Therapy (HAART) since 1996 has changed the notion of an early death for most. However, some individuals have been able to experience a more smooth transition into a longer life than others. For those preparing and waiting to die, psychologically giving themselves permission to hope for a long life was very difficult as anti-HIV treatments were unproven – ‘Am I giving myself false hope? And what about side effects and resistance?’ So the waiting to die continued a little longer for some. Re-engaging with work also proved complicated. Previous acquisition of skills were lost and explaining years of absences from work was confronting.
A fresh beginning comes from the confidence of knowing that what has been in the past is different to what could be in the future. When I look back at the past, I endeavour to accentuate the wins and build on strengths. I choose to frame the experience of failure as feedback, asking ‘What could I do differently next time?’ I accept that most human endeavours are about progress not perfection, so I am gentle and kind to myself and others. Goal setting can be simple: ‘Who am I today and what do I value? What is next for me? How do I start getting there?’
As we start 2008 I would like to share a favourite quote from Nelson Mandela’s 1994 Inaugural speech.
‘Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light not our darkness that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented and fabulous? Actually who are you not to be! Your playing small doesn’t serve the world. There’s nothing enlightened about shrinking so that other people won’t feel insecure around you. We are born to make manifest the glory of god that is within us. It is not just in some of us, it’s in everyone and as we let our own light shine, we unconsciously give other people the permission to do the same. As we are liberated from our own fear, our presence automatically liberates others!’
