There is a saying that the more things change, the more they stay the same. Some of my ongoing experiences relating to HIV are very much this way.
My battles with HIV and AIDS are well and truly in the past now, thought of and discussed only when giving Positive Speakers’ Bureau talks. My life has progressed happily forward, and like Matthew in Talkabout #154, HIV is an insignificant thing these days, and after 26 years of living with it, I should think so. I have done university and TAFE, settled into a relationship and started my own business. The long term goal now is, with the business growing exponentially, I hope to be off the Disability Support Pension in another two years.
However despite all this, there are still those irksome little things around to remind me occasionally I am HIV positive. Now don’t get me wrong – I am not in denial about being HIV positive, nor am I trying to escape this fact. I wouldn’t insult myself or other people in the same boat by doing that. When you set yourself down a particular path, there are times when you just don’t want to have to look back over your shoulder to see where you have been.
In Mid-1996 I was living in Penkevil St at Bondi. I lived there just prior to, and just after, my hospital stay with AIDS, and I wasn’t a very well boy. I weighed around 50kg and had very little energy to get around, but insisted on getting out of the unit and up to the Bondi Road shops just to get some fresh air. I guess I never really thought about how I must look to other people, this literal walking skeleton.
Like most people with wasting disease I was so used to seeing it that I was in denial enough to think that it wasn’t obvious…at least not to me. After getting out of Prince Henry Hospital, and starting to get my health back together again, I was placed on a short course of Deca-Durabalin (a steroid) and my weight eventually returned to normal (though not before I went through a rather funny teddy-bear period where my weight ballooned to the high 80kg before dropping back to the low 70kg).
In the course of my fresh air walks, I used to amble past the French Pastisserie in Bondi Road, sometimes several times a day, occasionally venturing in for a treat. Several years later, and by then living in Ocean St, I was wondering up to Bondi Junction one day and passed this old woman and her helper. I had just passed them when the helper turned around and asked me if I had been the very thin, sick boy who used to pass the patisserie on his way to and from home. It turns out she was one of the shop assistants in the patisserie, and said that she used to watch me crossing Bondi Road, wondering how I managed to get around. She was absolutely amazed that I had survived, and that I looked so well. I just said that yes, I had been very sick, and I was surprised myself that I was still alive, but I was a very self-determined and very stubborn person, and I felt that had a lot to do with me surviving that period.
Then she asked me the inevitable question – what had been wrong with me? It then crossed my mind that despite all the years that HIV had been around, the press it had received, the attempts to remove the discrimination that the name caused, I was not able to say to her “Oh, it was just an HIV thing” or “Oh, I had AIDS”. I felt I had to be so guarded about what I said next, so I told her that I had just had a viral infection which had gone to my brain and caused me to lose weight and had affected my sight. At least this was a half-truth. But it made me so aware of my HIV status, and that I lived with a disease that was not, and possibly never will be, socially acceptable.
If I had cancer or MS or Parkinson’s or a myriad of other diseases I could just say that, and the only reaction would be sympathy. However, HIV raises a whole lot of other issues in people’s minds – gay, drugs, sexual infection etc. It is not a sympathetic illness to someone on the street. That encounter happened about six years ago, and I know that for many HIV positive people nothing has changed. The discrimination is still there. They still feel that they are treated as outsiders. It doesn’t matter how hard you try, it is pretty well impossible to weave HIV into any mainstream conversation.
My second issue with being HIV positive is internalized discrimination. And don’t try to tell me this doesn’t happen! As a result of both AIDS and long term drug treatments I am both visually impaired (blind in one eye, with a crimp in the retina of my good eye as a result of CMV retinitis), and have peripheral neuropathy in my feet. Admittedly the neuropathy has partially resolved itself over the years, due mainly to treatment dosing changes, but it still affects the way I walk. I have a slight stagger, and a tendency to drift slightly across sidewalks. I can’t wear thongs or slides, as I can’t feel them properly and tend to walk out of them – which is a bit embarrassing.
In the course of my everyday life, these two things aren’t really an issue. After 11 years of being partially blind, I have learnt to live with it, and I get along pretty well. I have to have sub-titles on the TV read out to me (my poor partner, especially if it is a full sub-titled movie I want to watch), small print in papers has to be read to me, and I avoid crowds at all costs, especially Sydney during the lunch hours. Trying to watch where everyone else is going, as well as trying to see where I’m going, is an art I’ve never quite developed. And I hate people who keep pace with me at my left rear, never quite coming into sight. It is like being shadowed, and never knowing who it is that is shadowing you. I’m used to the accidents like tripping over bulges in the footpaths because I can’t see them, stumbling for no reason, running into things that are just out of vision. I don’t apologise to people I run into anymore – it is more often than not their fault for not watching where THEY are going.
As for nights, well I am totally night-blind, and don’t go out anywhere on my own after sundown. You have no idea what a death-trap our local footpaths can be at night. I wrote several articles on the problems of invisible disabilities when I was Office-Bearer for the Special Needs Collective at UTS. One of the most difficult things about having partial blindness, and still being able to get around is that it is hard for people to understand you have a disability because they can’t see it. We only associate disabilities with things like crutches, walking sticks, walking frames, wheel chairs etc. I stopped getting my Disability Parking Permit (David, my partner, has to drive me around) because (A) the RTA doesn’t count my type of blindness as true blindness and (B) I got sick of people giving me a dirty look and asking what sort of disability I had. I used to tell them to mind their own bloody business.
So, this is bad enough, despite my ability to come to terms with my disability. However, the neuropathy has caused me a whole new lot of problems, and these relate directly to discrimination. Over the last six to seven years I have had incredible problems with our gay hotels in regards to my gait. I have been questioned about how sober I am, though not forbidden entry after explanations at The Oxford Hotel. I have been denied entry to The Colombian due to tripping over a small rise at the bottom of their outside stairs that I hadn’t even seen; and have had problems getting into The Imperial on two occasions, and being banned from entry on a third occasion when, out of pure frustration I had a barny with the manager outside.
I was with a group of friends, and as I said I lurch a bit when I walk and he picked me out deliberately as we came down the street from Newtown. Not even my explanation that I had nerve problems in my feet from HIV made an iota of difference. I was not only angry, I was offended that our gay venues have people on their doors, and working for them, that have absolutely no understanding of HIV (yes, we are talking gay here) or of the long term problems associated with it. I was going to take the issue further as far as The Imperial went, but hey…I really don’t like the pub anyway. Needless to say, I have had no problems at The Newtown, or at The Bank. I believe I am not the only one this has happened to.
And as far as medical treatment goes – I really wish my doctor – as much as I love him – would treat me as a patient, and not as someone with HIV. As I get older the things that are happening to me are more related to age than HIV (I haven’t had a serious HIV problem for many years), and I wish he would prescribe for me as he does for his other patients, instead of seeing everything as something that is HIV related, and requires me to sit for hours in our public hospitals to see a HIV specialist in whatever area, who then tells me it is just a normal thing to have happen, and prescribes a perfectly normal drug to clear it up.
Now these things remind me that I am HIV positive. It doesn’t matter how normal I try to make my life, they are always going to be there to bug me.
Tim Alderman
