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The Changing Face of Time

Having lived with HIV/AIDS for seventeen years now, I have seen many changes over time in the way it is viewed, written and spoken about, and controlled. Originally a Category A (Asymptomatic), I proved healthy for quite a number of years before progressing through Category B (Symptomatic) to Category C (AIDS). The actual classification system has become much more simplified over the years, the original CDC (Centre for Disease Control) classifications being quite intricate, using categories, then sub-categories.

It was at Category C that I was supposed to die, as most did. Surprise, surprise! Combination therapy kicked in when I was at the lowest ebb AIDS was to take me to, with Candida, CMV retinitis, Wasting, anemia, and ten CD4's all at the same time, and restored me to a state of relative good health.

HIV/AIDS has always been classed as a life-threatening illness, but in the face of where I am now, with an undetectable viral load (two years), a fairly stable CD4 count of around 300, and a part-time return to the workforce, I sometimes wonder about a number of things. Having survived Category C AIDS, and returning to a life of relative normality, am I still classed as Category C (or do they have to come up with some new categories, such as D:Resurrection), and do I still have a life threatening illness? As opposed to a chronic manageable illness. I guess I know the answer to the last question, that without a drug or vaccine to prevent me slipping back to what used to be called ARC's (AIDS Related Conditions) but are now called OI's (Opportunistic Infections), I remain living with a life threatening illness. Several periods of serious illness over the last few months have shown me how difficult a goal I set myself on returning to full time work. I no longer (despite previous writings) live that delusion! My circumstances are distinctly different from that of the newbies (newly diagnosed) who have control via drugs, over the virus from the time of diagnosis.

Also over the years I have had a couple of altercations with people over the usage of the term 'long term survivor'. I attended the one and only Long Term Survivor Peer Support Group that ACON (Sydney) ran about 1994/'95. The first two meetings were totally consumed and wasted over a heated debate on the use of this term. The group, unfortunately, was a failure. I hoped to gain some positive input from other long termer's, on the methodology's they used to create their own lives, and keep themselves occupied, but all I got was a group of bitter and twisted people who blamed HIV/AIDS for ruining their lives. I realised there was no way forward with people like this. I lasted two group sittings, and gave it up. Personally, I have never had any problems with the 'long term survivor' terminology. Considering the battle I have fought through AIDS, I definitely consider myself a survivor. The latest phrase for people in this situation is that we have 'Lazarus Syndrome'. I really don't like this term, and being someone who can't stand political correctness, I see no need to change established terminology's. Lazarus was raised from the dead, and even though I can see where the proponents of this term are coming from, I do not consider that I was dead.

As a regular surfer of HIV sites to review them for 'Talkabout' magazine, I have found an increasing trend, particularly on American sites, to print HIV/AIDS in lower case. I find this a bit disturbing in that the letters stand for the name of an illness-Acquired Immune Deficiency Syndrome. It is an important name, and one that has had a phenomenal impact on the last two decades of the twentieth century. Are people so ready to rush HIV/AIDS into the mainstream that they feel that by printing the letters in lower case, less notice will be taken of them? Just a thought.
As someone who thought they were going to die from AIDS, it has been a long, sometimes painful journey to this bend in the road marked 'Living with HIV/AIDS'. I have lived an interesting history. From the ignorance, fear and loathing of the early days (and remember only too well the horrid way that poor little girl, Eve, was treated, back in the early eighties), to a point where now it is more taken as a fact of life. However, there are still those amongst the younger generation who see HIV/AIDS as a product and problem of "my generation" i.e. the eighties generation of gay people. Don't laugh! It has been said to my face.

In the course of general medical care, and as a speaker with the PSB (Positive Speakers Bureau), I often encounter people who are amazed by, and comment on, the length of my survival with HIV/AIDS. However, I found one of the funniest, and most endearing comments came from an anaesthetist at St. Vincent's, just before I went under and was rolled into the theatre.

"We can't let anything happen to you. You're one of the originals".

Added to site August, 1999, Australia.

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