Tag Archives: AIDS

Seeing In Time

November 4, 2014Gay Interest, Health Information, HIV/AIDSAIDS, blind, CMV, HIV, hospitals, legal, vision-impairedtimalderman

This article – now edited – was written in 2001. I intended to sue St Vincent’s for causing my loss of sight by not testing me for CMV in 1996. I had been given a list if solicitors by HALC (HIV/AIDS Legal Centre), and had picked one out. It was pro bono, and I had several discussions with him. However, charges such as searches and photocopying etc were my responsibility and when the first bill for $1500 came in, I just had to drop it. 13 years on, the predicted retinal detachment has happened and a lot if other shit besides. I am now contemplating having my left, totally blind eye, removed and replaced with a prosthetic. What happened here was just an introduction!

I have come to realise, perhaps a bit late in life, that you spend far too much time bending in the general direction of things instead of sticking up for yourself and saying no, this is not what I want, or the way I want things to go!

I have decided to sue a local hospital. That I have chosen to do this has come as a tremendous shock to me, though those around me seem to have been waiting for me rectify what has been, for me, a life changing event.

By 1996 I had accepted that sooner or later, AIDS was going to get me. What I hadn’t counted on was that St. Vincent’s hospital was going to assist in my chances of survival! – and in the one ward they had where I always felt I would be safe – Ward 17, the dedicated HIV/AIDS ward.

It was a sudden change in health status that delivered me to the A&E department. I had collapsed outside my apartment building, gasping for breath, clutching my chest, thinking that a heart attack was going to beat AIDS to the crunch, or that PCP had finally caught up to me, as it seemed to do to all in my state. It turned out to be neither – I had a collapsed left lung, though being HIV, they moved me into Ward 17 after inserting a tube to keep the lung inflated. Most of us assume that we go into hospital to be cured of health problems, or at least receive a better standard of medical care to assist you to a slightly higher standard of health than you have when you enter. Well…I have to tell you it doesn’t always happen that way!

I firmly believe that some people go into health care because they truly believe in what they are doing. They truly believe they can make a difference, that they can benefit people who are ill or are disabled. These people are not professors of medicine, do not have a fancy examination room with a prestigious address, and are not heads of departments. The well-heeled medico’s who share these attribute have strings of initials after their names. They do ward rounds with a string of nose-in-the-air arse lickers and sycophants. St Vincent’s at this time had more than its fair share of the latter, and unfortunately, some of them were in HIV medicine!

Now, I don’t want to give the impression that I was just in hospital with a collapsed lung – it was more complicated than that. I was in the midst of changing doctors, so didn’t actually have a GP when I was admitted to Ward 17. My scripts for AZT had just run out, I had chronic anaemia, chronic Candida, and weighed in at about 50-something kilos. In other words, I was a very sick boy. Now, under normal circumstances, with a CD4 count of about 10, they would test and examine you for ALL AIDS related illnesses – PCP, CMV, MAC, neurological and psychological problems. For some unknown reason. Sure, they treated – and eventually repaired – the collapsed lung. They tested me for PCP – negative result – and gave me a blood transfusion, but that was it. No eye examination, no dietician, no occupational therapist – no, that’s a lie, I did have one session with an OT, and though she promised other sessions – she never quite madeit back.

So I lay there for 10 days, drifting in and out of sleep, as you tend to do when you are in this bad a condition, suffering in silence the daily ward rounds with a
professor who seemed more interested in prestige than care, with his little band of sycophants, who seemed to assume that this was what was expected of theM. No one seemed to particularly care, so I was thankful for friends, for without them I think I would have gone mad.

Death seemed pre-ordained at this time I felt I had outlived everyone else anyway, and that my time was drawing to a close. I had predicted 2 years when I quit work to go on the pension in 1993, and had managed 3, so in many respects I felt I had survived beyond expectation, and short of a miracle, I was going through the final stage of my life. I was, to all intended purposes, fulfilling expectation.

So, with a repaired lung, a couple of pints of fresh blood, and some Candida medication, I was discharged 10 days later. No HIV medications, no doctor. I had my discharge papers sent to a local HIV GP, who I didn’t know from a bar of soap, hoping that she would feel sorry for me, and rush me through the waiting list. Thankfully, she did just that!

Two days out of hospital, and her receptionist rang to say my discharge papers had arrived, and that even though they didn’y know who I was, the doctor wanted to see me. I would like to think, in hindsight, that this was almost like some sort of sign, as having my hospital discharge sent to her was an act of providence that probably saved my life.
As soon as I mentioned to her that my vision had been ‘greying over’ for a couple of weeks, she was immediately on the phone to the Prince of Wale’s Hospital Eye Clinic at Randwick. They promised that somebody would stay back at the end of clinic until I arrived to have my eyes checked. They thought at that stage that I had CMV retinitis, but could not be certain enough to confirm the diagnosis. I had to travel to Hurstville the next day to see a leading ophthalmologist, an expert in CMV. He confirmed the diagnosis, and by the time I arrived home that afternoon, their was a message to ring the doctor. She wanted me admitted to Prince Henry Hospital straight away.

Prince Henry added other health items to the list St Vincent’s had. On top of chronic anaemia and Candida, and my 10 CD4 cells, they added chronic bilateral CMV retinitis, and Wasting Syndrome. Pandemonium was about to strike, but at least this time I felt as though people cared. Prince Henry was much more grounded in reality than St Vincent’s, and whatever my prognosis may have been – mortality was never discussed – they went out of their way to help me. Sure, I had a drip in both arms, was being transported to Prince of Wales twice a week for intraocular injections of ganciclovir, and I was a bit of a guinea pig because of my condition – medical students must love people like me, as we become a living text book – but they did care. I had a dietician who planned meals and snacks for me, and nurses on hand to help me during my night sweats. I even had a reporter from Japan interview and photograph me, as he was doing a piece to be published in Japan. After seeing me, he was concerned that the Japanses ‘head-in-the-sand’ attitude to HIV/AIDS was something to be seriously concerned about.

To be honest, the two weeks in Prince Henry gave me a different perspective on many aspects of life. There was the guy in the room next to mine – I had a huge room to myself in Marks Pavilion, and the windows looked out over Beauty Bay – who had terminal cancer. Not once, despite whatever he may have been going through, did I hear him complain or whinge about his lot. He virtually lived in the hospital, and even had his own stereo moved in with him. And the young guy who was at the opposite end of the ward to me. He also had CMV, but fuck, he was so young, so innocent! We sat together in the eye clinic one day, and he grasp[ed my hand, cuddled up to me, and cried. I wanted to give him some hope, but I would have felt like such a hypocrite. I didn’t know if their was hope for me at that stage, let alone try to give it to someone else who I knew was worse off than I was.

Well, they saved my sight – sort of! The injections, and eventually $10,000 worth of ‘Vitrasert’ ganciclovir implants managed to save the sight in my left eye. As for my right eye, the optic nerve was damaged by the CMV, and despite efforts on everyones part, I lost 80% of the vision in it, and the impact on my life has been…disconcerting. I have regular checks every few months now, and I have to be careful not to bump my head hard on anything. The scar tissue in the left eye is so dense that they are concerned now about me ending up with a detached retina. I’ve also had two operations to remove cataracts caused by the implants. They originally estimated a 4% chance of cataracts from the implants, but 12 months later this prediction was upgraded to a 100% chance. Some odds you can’t beat.

But this has been the least of my worries. Sure, my right eye has, in some respects, compensated for the loss of vision in my left, but not entirely. It took me twelve months to adjust, but that twelve months was not without incidents, such as tripping over some tree roots in Crown Street, and landing flat on my face in front of some people coming in the opposite direction. I also tripped and stumbled a great deal as my vision tried to compensate for a change in everything, including perspective. Stairs with contrasting edging strips became ramps – at least from my perspective – and ‘I’m sorry!’ became part of my everyday vocabulary as I bumped and staggered my way around. That is something that even 5 years down the line, I have never quite gotten used to. This would not be the first time I have stated that in some respects, it would have been easier to have ended up completely blind. At least that way, I would have a white cane, or a dog, and people would know I was definitely blind, and not give me condescending looks every time I run into someone. For some unknown reason, it has always ended up my fault. I just accept.

Rules of our household – don’t leave anything sitting low on the floor, or hanging to my left when I don’t know it is there. When walking down the street, keep to my right. If you don’t keep to that side, expect me to keep moving to ensure you are there. Go into the city? Not on my own these days. As much as I love the city, and love to watch it grow, it is a place for people in a rush, not a place for people who are visually impaired. Too many people, too many doorways for them to rush out of, and too many people crushing into confined spaces. I miss it very much, but it is not a place for me anymore. I shop locally, and that is hazardous enough for me. Do anything during the peak hour rush? Not likely these days. I had to meet David at 6.00 at the Entertainment Centre, to attend a couple of concerts. I actually mapped out a way to get there that would have a minimum of people that I would have to avoid. I go to daytime lectures and tutorials at UTS to avoid travelling too and fro during peak hours. I’m also trying to get them to contrast edge-strip the black granite stairs in the Tower Building, so that visually impaired people can see where the stair edges are. That is one fight I may yet win. Oh, and I shouldn’t forget that I kick small children.
David, who is my partner, and I went for a walk down Hall Street, leading to Bondi Beach, for one reason or another – we were probably looking for somewhere to eat breakfast. Sure enough, for a split second, I wasn’t watching where I was going and the next thing I knew, this kid had run straight onto my foot as I took a step forward. He just came out of nowhere, as kids do, and I managed to literally lift him into the air with the forward motion of my step, and launched him off to the side of the footpath. Thankfully, he landed in the grassed area around some trees growing on the footpath. I would hate to think what may have happened if he had landed on the footpath itself. I don’t know who got the biggest fright – the kid, myself, the kid’s father, or David. The father came running as I picked the kid up to make sure he was okay, but the look on the father’s face said it all – It was my fault, and I should have been watching where I was going. Even an explanation that I was
partially blind, and hadn’t seen the kid coming didn’t seem to sit well with him, nor did a multitude of apologies. Now, I dare say the kid probably forgot the incident 10 minutes after it happened, but It is still a nightmare with me. Whenever I think about the state of my eyes, that is the one instant that comes straight to mind. It’s not just the incident with the kid – I’m aware of that. It is that in some way, these sorts of things happen to me everyday, though fortunately with larger adults, not small kids. Despite all my precautions, despite taking my time getting around, despite walking metres up a street to use crossings or lights, despite great care at intersections I feel it is only a matter of time before I either seriously hurt somebody, or they seriously hurt me.

So I’m not just going to sit back and cop it sour anymore. Somewhere along the line, in a hospital, on a particular time on a particular day, somebody, for whatever reason, decided not to do something, and now I’m paying the price. Well, it’s time for someone to pay for their oversight, and the time to pay is NOW! My health is as good as it’s going to get at the moment, and with it being unlikely that I will ever return to full-time work, or to any job that requires me to get stressed, it is time to take action. I’m not going to ignore it anymore, or pretend that it just didn’t happen. It did, and my life has never been the same since.

Personally, I think that they, like Prince Henry, and certainly me, never expected me to live, so just doing a minimum of care in 1996 may have been acceptable practise, especially in an area of medicine that has always been cash strapped. But I didn’t die! I am well and truly alive, and the time for revenge is at hand. I hope that at the end of the day, they will learn several lessons. Never assume anything; never underestimate the strength of the human will, and mind; and never think people are just going to forget about it! We Don’t!

Tim Alderman
Copyright ©2001

Getting On With It! A 33-Year Retrospective of Life with HIV/AIDS

The challenge of writing about 33 years of living with HIV/AIDS isn’t so much to write tomes about what actually was witnessed over that period. That is easy to do, and I could ramble on forever about it. The challenge lies in being objective and succinct, to tone down the schmaltz and sentimentality and cut to the chase. Not as easy as one may think, as these were the most challenging, relentlessly ruthless and heartbreaking period of my life. But if survival is the gauge of ones strength and tenacity, then I have come out at this end of it with flying colours. Indeed, the cup is half full!

So what was it really like in 1982 to be reading snippets in our local gay press about this mysterious illness in The States that seemed to be targeting gay men who frequented the saunas, and quickly killing them? Well, cynicism and disbelief to start with, and the surety that within a short period of time they would find an antibiotic to clear up yet another STD. Soon the snippets were to become columns, then pages as the mysterious and deadly illness leapt from the shores of America and found its way here.

Our response was mixed. The first recorded case of HIV at home was 1982, and the first death in 1983. We had our usual ratbags who yelled and screamed about God’s vengeance on the evil, sick and perverted gay lifestyle (obviously a different God to the compassionate, all-forgiving one that I had heard about), the advocates of hate who demanded quarantine for all infected persons, and those who either quietly or vocally wished that we would all die or just go away. Not that easy folks! Thankfully, common sense prevailed and both the government and the grassroots gay community combined to put both AIDS Councils and NGO programs in place. Our quick response was instrumental in Australia always being at the forefront of HIV/AIDS care. Within 2 years every state had an AIDS Council under the national umbrella of NAPWA (National Association of People with AIDS), and the formation of support organisations such as The Bobby Goldsmith Foundation, Community Support Network (CSN) and Ankali. Without these organisations life would have been grim for those infected. In 1985 testing was introduced. It was a bit of a strange affair in the early days. Due to hysteria and discrimination no one wanted their personal details on a database, so you chose a name, and Albion Street Centre issued you with a number that then became your ID. You had a blood test, and waited for two weeks – talk about high anxiety – to get your result. I had a mystery illness in 1982, a flu-type illness that wasn’t the flu, and already suspected that I had sero-converted and was going to come up HIV+. I was right. Counseling? Oh yeah, we had a lot of that back then. “You’ve got about 2 years to live”. Shrug shoulders “Okay”. And off we went knowing the inevitable was rapidly approaching, and it was time to PARTY!!! What else could you do? However there were horror stories. The disgusting treatment of young Eve Van Grafhorst is something for all Australians to be ashamed of. Born in 1982, she was infected with HIV via a blood transfusion. When she attempted to enrol in her Kincumber pre-school in 1985, parents threatened to withdraw their children due to the (supposed) risk of infection. The family was literally hunted out of town, and forced to leave the country and go to NZ. I will never forget the sight of this poor, frail girl on her way to the airport. I, like many others, was horrified that this could happen in Australia. Thankfully, her NZ experience was quite the opposite, and she lived a relatively normal life until her death in 1993 at 11 years of age. Her parents received a letter from Lady Di praising her courage.

Meanwhile, the Australian nightmare was well and truly hitting home. My first close friend, Andrew Todd, died in 1986. At that time there was no dedicated AIDS ward, and Andrew was shifted between wards as beds were needed for other cases. He died on Boxing Day in A&E at St, Vincent’s. I had the sad duty of ringing all my friends at a party to tell them the sad news. Party pooper recognition acknowledged! Ward 17 at St Vincent’s eventually became the dedicated AIDS ward, and for the next 10 years was never empty. Palliative care was through The Sacred Heart Hospice. Hospitals such as Westmead hit the headlines for all the wrong reasons; full contamination clothing for those working with HIV people, rooms not being cleaned, meals left outside doors. Even the poor old mosquito copped a hiding as a means of contamination, along with toothbrushes, glasses, cutlery and crockery. An advertising campaign featuring the Grim Reaper bowling down poor people created an apocalyptic vision of HIV that scared the life out of everyone. It was quickly withdrawn. In the interim, my 2 years became 4, which became 6 followed by 8. My life became a haze of alcohol and cigarettes, not shared alone.

In the 80’s I held a lot of parties with anywhere from 40- 60 friends attending. By 1996, if I had tried to hold a party I would have been lucky to have dug up 10 friends to attend. In the blink of an eye my social circle was effectively wiped off the face of the earth. Hospitals, hospices, funerals and wakes became the dreaded regular events. It was death on a relentless and unforgiving scale. The Quilt Project became the focus of our sorrow, and it’s regular unfoldings and name readings were tear-filled times of remembrance and reminiscence, along with the yearly Candlelight Rally. I attended until I became so empty that I could no longer bear it. I submitted my names but no longer attended. In the early 90’s four friends died close together – two from AIDS, one a heart attack and one cancer. This was a particularly heavy blow as two of these friends had been regular “gutter drag” partners, and that part of my life effectively ended. In a perverse way, it seemed strange that the Big A wasn’t the only thing stalking our lives.

Despite its reputation for being human Ratsac (the Concorde Study in France named it such, after conducting an unethical trial; turns out they were correct!) I started taking AZT when my CD4 count started to take a dive. Hard work, long hours, heavy drinking, chain smoking, a shit diet and emotional turmoil didn’t help. Pub culture became lifestyle. Did several drug trials – D4T, which was sort of successful, though the same class of drug as AZT. Also p24 VLP (Very Light Protein) which proposed that stimulating the p24 antigen may help control HIV. Total waste of my time. It did nothing. We started alternating drugs – 6 months on AZT, 6 on D4T, 6 on DDI, 6 on DDC. Perversely it seemed to keep the wolf from the door. Dosage was huge. Everyone on it ended up with kidney problems and peripheral neuropathy. Prophylactics added to the drug burden. In the meantime there was no HIV dental service and our teeth rotted or fell out due to bouts of candida. I left work in 1993 after being seriously knocked around by viral pneumonia which should have killed me…but didn’t. I was shuffled onto the pension, and given rent subsidised housing by DOH. The subsidy seemed like a good idea at the time. After all, weren’t we all eventually going to be killed by the Big H, so no one would be on it for that long? Famous last words! My alcohol consumption and chain smoking increased, if that was possible! Was losing weight at an alarming rate, and naturally no one noticed because I took to wearing baggy clothes to disguise it. Nothing quite like being delusional. Moved from Darlinghurst to Bondi. Nothing like moving away from the scene to help your health…not! Collapsed in the street, and admitted to St Vincent’s not with PCP as suspected but a collapsed lung. Two weeks later and a change of female GP’s saw me back in the doctor’s rooms while she read my hospital discharge report. Had they tested me for CMV retinitis? No! Was I having trouble with my vision? Yes, but I do wear glasses. Guess what? We’re sending you for a little holiday at Prince Henry Hospital (now closed). I was a little bit sick. Chronic CMV retinitis, chronic candida, chronic anemia, had 10 CD4 cells and weighed 48 kgs. Mmm, prognosis was not good. Well, it had been a good life. I was certainly joining a band of party people. But no! Life hadn’t finished with me yet. Protease Inhibitors had come along at an auspicious time, and within a fortnight I had been stolen from the arms of death. Mind you, that fortnight had been no picnic. Ganciclovir injections into the eye, Deca-Durabolin injections to help put weight back on, blood transfusions, and enough finger prick blood readings to last me the rest of my life. And the problems had just started for this return-to-lifer. Not dying when you are supposed to really fucks up your head space.

So started the next round of therapies. Peer Support groups; counselors; Caleo (a treatment management group who help you maintain the impetus to take the billion pills a day we were taking); clinics; dental care (now up and running); volunteer work (to keep one sane). What started out as volunteer work at the then PLWHA (NSW) Inc (now Positive Life) turned into paid employment as a research assistant. I started writing for “Talkabout” magazine, joined the Positive Speakers. Bureau, and learnt to use a computer. A couple of stints back in full-time employment made me realise that big changes needed to be made with my life. By this time my health was pretty well back together. A couple of nights out pushed home just how few people I knew, however did lead to meeting my current (now ex) partner. A brief encounter with Indinivir sludge in my kidneys (which involved having a stent inserted then removed) also made me aware that for HIV+ people the unexpected can happen at any time. Yet another change of doctor. Self-empowerment had become an important issue, and I wanted a say in my health management, as distinct from being dictated to. Big changes were about to happen.

In 2000 David and I did a big (and expensive) holiday to the Red Centre. It was an amazing experience. Before leaving Sydney I had applied to the University of Technology in Sydney to do my degree in writing. Shortly after arriving back home I was informed that I had been accepted. Ah, the advantages of mature age AND disability. So spent three years doing my Graduate Certificate in Writing, was office- bearer for the Special Needs Collective…in fact I WAS the Special Needs Collective, and discovered I hated having to deal with the moronic “radicals” who called themselves the Student Association and did nothing except rant and rave, and waste student money. I was glad to leave uni. Towards the end of 2004 I decided to get my chef’s credentials from East Sydney TAFE, and crammed a 12-month course into 6 months. As much as I hated uni, I really loved TAFE and found it more grassroots and honest. David and I started Alderman Catering, a top-end catering business though it only lasted about 2 years as I found it very exhausting. I then sort of returned to my retail roots by opening a web site called Alderman Providore to sell Australian made gourmet grocery items. The site proved successful, and within 4 years I was opening my second site, this time specialising in tea, coffee and chocolate products. I got involved in a trial using Goat’s Serum to treat HIV, but again another waste of time. I did manage to get a skin rash from it, and managed to score a $1,000 for participating. In late 2009 the GFC hit, and online shopping took a major hit. After a disastrous Christmas that left me severely out if pocket, I decided to sell the business and put it behind me.

More eye problems followed, this time involving my blind eye. Back to the regular rounds at the Sydney Eye Hospital, and an injection of Avastin into the blind eye to stop it creating new blood supplies to an eye that couldn’t see. By this time, the interior of the bad eye was collapsing, and it took on an unnatural colour. Before this I hadn’t looked blind. Now I did!

The next step, which sort of brings us up to date, was a major move. Plans to move north had been on the agenda for 10 years – in 2011 it finally happened, though we did jump the border which wasn’t in the original plan. Recently my retina detached in my one seeing eye…or rather was pushed off by all the scar tissue present from my original CMV infection. An emergency operation to scrape down the scar tissue, and replace the retina and fluid (called a vitrectomy) has seen my sight degenerate even further and I am now the proud owner of a white cane curtesy of Guide Dogs Queensland. It has become obvious that our two Jack Russell’s are not, despite their best of intentions, good seeing-eye dogs. I can see, though very poorly. A lot of life is a blur these days.

However, I am not going to complain. I have always enjoyed a challenge, and this presents yet another one. I gave up smoking 15 years ago, and drink only lightly and socially these days. My partner and I both adopted a healthy diet and exercise program 8 years ago when we both started getting unattractively over-weight and inactive. We have both turned our lives around by adopting this course of action. In 2013, I obtained my Certificate III in Fitness from Southbank TAFE. It proved both a challenge for me, and for the TAFE, as they had never had a student with severe visual impairment do the course before. And finally, at the beginning if this year, I had my troublesome blind eye removed. I now have a very life-like prosthetic that I dan do drunken party tricks with.

33 years eh! OMG where have those years gone? Despite all the discrimination, stress, anxiety, illness, deaths, survivor guilt and despair, there have been moments of great introspection, illumination, strength and enlightenment. That over-used word “empowerment” springs to mind and that is perhaps the one word that sums all those years up. Victim? No way! Survivor? Not in my words! And I have never been one to wallow in self pity. You just need to grab life by the balls, and get on with it. I trust that is what I have done.

Tim Alderman