This the first time I’ve had to “burn a bridge”, to really adjust my long term plans because of HIV.
Sometimes being HIV positive makes me feel like I’ve lost control over my life — especially becoming sick and having to make changes to the way I want to live. More insidious, but just as confronting, are the other changes that HIV can sometimes force into your life when you’re not sick.
I resigned from my full-time job in August 2004. My original decision to leave work stemmed largely from my desire to resume studies at university. I’d been on an extended break from medical school, and was working in a related field. I wasn’t coping too well — I’d found that two weeks of sick leave and four weeks of annual leave don’t travel very far, and in my last couple of months at work it was becoming a rarity to earn a full pay cheque. Sick leave without pay can certainly hamper any attempt at budgeting. So leaving full-time work was more than appropriate.
It wasn’t until I’d started starting preparing for re-entry to the course that I began to question what I was doing. How could I honestly expect to cope with the last couple of years of studying medicine, if I was finding it difficult to merely work full time? After a lot of soul-searching and brutal reasoning and rationalisation, I came to the conclusion that medicine wasn’t going to be a practical course of action.
For me, the realisation that full-time work was no longer a viable option and that I wasn’t going to be finishing one of my hard-earned dreams was profound. Acknowledging that HIV was affecting my choices and limiting my options was particularly confronting.
Disempowerment is a word that many counsellors, psychologist and psychiatrists like to bandy about (and was certainly something that I’d studied in medicine), but the actual experience is not at all like I conceived it would be. Like many people living with HIV, I’d notionally accepted that I might have to reduce my workload, and maybe even one day stop work due to illness. And as the frequency of illnesses increased, I wondered when it was going to be the right time for me to make changes in my life.
The old adage “now is never a good time” always seemed to ring true. After all, I’ve only been positive for just under five years, and I have many friends who have lived with HIV for much longer than me who are still managing to work full time.
I found it challenging to accept that my personal experience of living with HIV was just that — a personal experience. That it wasn’t necessarily going to be identical to others, and that I would have to adapt and change with the situation. But I think that just like “disempowerment”, my ideas of what constituted adapting or changing didn’t entirely connect with what was involved.
My biggest personal challenge in this experience has been to find a new focus and a new direction — something I badly need in order to keep feelings of uselessness and futility at bay. I want my life to have meaning, and so I have had to explore new ways in which I can express my desire to contribute to society and give my life meaning.
My only real way of fighting the disempowerment I have experienced has been to explore new career and education options. I’ve accepted the necessity of taking some time out to establish a new frame of reference for my life. I’m not entirely comfortable living on the pension, but have already found things which help give my life structure, meaning and purpose.
Getting involved in the community was certainly a good place for me to start — I’ve been a speaker for the PLWHA (NSW) Positive Speakers Bureau since 2001, and have been able to get more involved with the PSB and with PLWHA itself. And I’m busy looking at all the university courses to find something that I can study part-time (a surprising variety), and have re-discovered several long forgotten academic passions as well as the desire to teach.
The last couple of months have been intensely challenging, and even though I’m working my way through to finding alternative solutions and pathways for my personal development, I still sometimes feel like I have lost a part of myself. But I’m starting to find the silver lining, and am learning to enjoy the process of finding and creating new pathways for me to travel.
Though HIV continues to increasingly limit the way in which I live my life, I’m determined to find ways to grow and develop. The ultimate challenge for most of us is being able to find the strength inside ourselves to make the changes necessary without compromising our identity or integrity.
*Jason Appleby* lives in Sydney.
