I’m a 41 year long term survivor of HIV/AIDS. I’m severely vision-impaired from CMV, and mobility challenged from one of the early drugs designed to prolong our lives.
I used to see HIV disability as a singular issue, but ageing…I’m now 70…has turned that thinking around. No matter if you are disabled as a result of birth, accidents, stupidity, or illness such as HIV, all disabled people share one thing in common. We’re disabled! And quite often, this world is designed manufactured and built by people who aren’t. To make things worse, many think they know what disabled people need…without consulting with us!
I live in a Central Coast village. Footpaths here are a luxury. Residents usually walk on the roads, as having a sand base, the grass verges are a minefield. I’m lucky in that we have several new paths, though to use them when walking into the village adds several minutes to the journey. I also have to cross 3 busy roads. There is a pedestrian refuge on one, and a crossing on another, but the busiest middle one has no safe crossing. You not only need to watch traffic from four directions, but you have to step onto the road to see around parked vehicles. I’ve had several close calls crossing this road, and I dread crossing it!
In consultation with my local member…also disabled and in a wheelchair…we have put in a submission to council to have some sort of crossing put in there, not just for disabled people, but also to guard the safety of school kids, and the elderly using that path. Considering council is supposedly disabled-aware,they are certainly procrastinating. Safety aware indeed! Not!
Likewise the car park and entry access area of our local RSL were badly edge marked, and with a dangerous ramp to the clubs entry area. In bright sunlight, you could not see the pale yellow fluro markings at all! Coming out of the club into sunlight, I could not see the access ramp at all, and relied on friends or kindly members to get me safely to the ramp. Submissions from me and several other vision impaired people saw the whole car park remarked, and the club entryway reconfigured.
It is very empowering when you are listened to, and suggestions are acted on.,
I used to be frightened to speak up about these things, but if nothing is said, nothing changes. As disabled people, we have a right to be able to move safely around our local areas. Whether able-bodied or disabled, if you know of dangers in your local area, be an advocate and speak up. Small changes can save a life.
How often have you asked yourself “what the hell am I doing with my life?”. How often have you sat at work and wondered,”’why am I doing this?”. I’ve found that as I get older, it’s a question that rears its ugly head more often. You ponder the missed opportunities, the wasted time in jobs you hated; you envy those who are happily going about their chosen careers, fulfilling ambitions, doing what they enjoy.
I sometimes feel I’ve lived a life of quiet desperation. Most of my work life has been for nothing. I’ve nearly always been unhappy in my job choices…despite being very good at it…and developed the I’m-just-doing-it-for-the-pay-packet mentality. Sure, my latter years have been a lot more fulfilling, but the operative word is ‘latter’.
I wasn’t offered a lot of opportunities to select a fulfilling career. I left school at 15, in 1969, with the School Certificate under my belt and no idea what I wanted to do. According to my father and his family, I needed to get myself a “career”. By ‘career’, they meant becoming a plumber, electrician, carpenter or any of the associated trades. Considering the current sexy status attributed to tradies, I’m wondering if it may not have been a bad choice. I loved working with food and even when I was at school used to create my own recipes. However, it was the wrong time to be a foodie. My father suggested becoming a hospital cook (and tried to get me into that area), but the prospect of being stuck in a hospital kitchen for years was daunting. Let’s face it, hospitals are not prestige culinary establishments, especially in the ’70s. I begged out of it, though despite the severe lack of a restaurant culture at that time, the TAFE course may have been of benefit – at least I would have got a grounding in the basics. I had an uncle who was a pastry cook and he helped get me work experience at a bakery (Isoms) in Campsie. Now, if I hadn’t been 16 years old, if I hadn’t had to get up at five every morning and if I hadn’t had washing up and measuring ingredients as the full account of my day, maybe I would have stuck with it. Four months and I was out.
I spent the next 12 months (A) as a presser at a dry cleaning outlet and (B) doing repetitive work at a battery factory, where at the age of 16 I was getting adult wages due to the high turnover of workers, and the mind-numbing repetitiveness of the work. Not very inspiring and certainly not life choices. While in the dry cleaning job, I saw an ad in the window of a menswear store for a junior shop assistant in a high end menswear store . I got the job and…
…pretty well set my career path for the next 28 years. A quick timeline from there would read clothing, records, religious and church paraphernalia, monastery, back to religious paraphernalia, bar useful, sex shop, liquor, community work, cash office manager, data entry/doctor surgery receptionist, office work (at ASHM – the Australian Society for HIV Medicine). At least a variety. Could I really say I loved any of this? Well, it was a job.
The option of continuing education, through TAFE or university, was never presented to me early in my life. Doing anything creative was frowned upon and indeed one would have had one’s ‘inclinations’ (read sexuality) put in jeopardy by even suggesting that you might want to write, be a window dresser, hairdresser, clothes designer, interior decorator, artist or anything else creative. I was told in no uncertain terms that this was unacceptable.
This isn’t to say I didn’t do a few things that fulfilled my creative streak. I did some window dressing as part of general retail; I did quite a bit of writing, though none of it published at that time; I did some costume-making (as well as making my own drag outfits); some catering from home for a delicatessen; made my own jams and preserves (winning quite a few prizes in the process); and I was a DJ in two Darlinghurst gay pubs and bars for five years – the only job I’ve ever truly loved. Who knows, I could still become the oldest Trance DJ in Australia given the opportunity.
What other options would I have chosen for my life? In retrospect, I would love to have been an investigative journalist, in print or television. I enjoy research, and love history, and personally think I would have made a decent career out of it. I love gardening and would have made a successful landscaper or horticulturist. I love athletics and was a good high jumper, relay and short distance runner in my day. With the right encouragement before I started smoking, I would have loved that; or working on the stage; or a singing career (again we come back to smoking!) I have an intense interest in history, both local and global, which could have led in many directions. All these not to be.
What do I do now? I write! I love writing. It’s the flow of ideas; having that fledgling phrase circling in your head that just has to be put somewhere; the one word that can become an article; anger that can be released; opinions that can be controversial; comments that create debate; taking the collective consciousness of many and making it your own; pent-up frustrations released; intelligent argument put forward; comedy to induce a smile; information to be exchanged. Writing is wonderful.
Why suddenly 15 years ago did I head in this direction? And more importantly, where can it lead at this late stage? Well, HIV brought about this huge shift in my life.
As part of my self-organised repatriation after getting out of Prince Henry Hospital and surviving AIDS, I decided to take on some volunteer work to get out of the house and away from Days of Our Lives and the panic attacks I’d started having as a result of my swift and unexpected return to life. A life of clinics, counsellors and support groups was great for filling in time, but I also needed to do something that wasn’t medical. I’d started to see one of Sydney’s more eccentric doctors at that stage and felt a need to write about my experiences with her. This opened the floodgates, which haven’t closed since. I started writing about my experiences with HIV, the processes I was going through, the strategies I was using to cope, the sheer bloodiness of being HIV+ and having had AIDS, the questioning one went through and the realisation that one had to get on with it.
I think therefore I write.
I have always, even as a young kid, loved books. My compositions at school were always a bit over-the-top, much to the amusement of my teachers, and my parents were always being told I had a very fertile mind. Shame they never took this seriously.
On leaving St Gregory’s in 1969, Brother Geoffrey, who taught English, took me aside and told me I should take up a career in writing. Stupid me just let that comment drop.
In the 1980s I was a member of Acceptance Melbourne l and had quite an intense affair with the editor of their newsletter, and contributed regularly to it. I was a prolific letter writer. I edited the newsletter for the Dolphin Motor Club and was responsible for them starting a media sub-committee. I did several courses through community colleges on fiction and life writing and had two poems published overseas.
In 2001 I was accepted into the Humanities Faculty at UTS to do a degree in writing. But the first year of an undergrad degree is full of everything except writing. UTS uses authors to run tutorials, which might sound great in theory, but is just a means for them to push their own writing agendas and methodologies. As a mature-aged student, I clashed! I also didn’t feel comfortable with the often snobbish, elitist attitudes to reading and writing. The tutorial class was horrified that my favourite authors are Stephen King, Dean Koontz, Dan Brown, Michael Crichton, and Edward Rutherfurd. Well…fuck them!
By the second year, and finding yet another author being given their own tutorial, I looked to changing the degree to a Masters. At least by doing this I was just writing. The writing courses did give me the opportunity to publicly write about my drag persona Cleo and in a short story course to talk about my murdered brother, which had never been discussed with anyone. This making public some previously private parts of my life (other than HIV) was very liberating. I had at this stage done enough subjects to get my Graduate Certificate in Writing, so I took that and fled.
My university experience is not something I wish to repeat. The one thing I did learn is that it is extremely difficult to make a living out of writing in Australia. In the meantime I continued writing for Talkabout and the more I wrote, the more I wanted to write. I began to realise that all these articles had become a timeline of my journey with HIV, from the days of illness to the healing process to the return-to-work issues, from treatment issues to regaining my health, redirecting myself and finally my movement away from a life centred around HIV, and a spiritual reawakening through Buddhism. In a way, writing freed me. I took advantage of the beginnings of the Internet to do HIV site reviews and eventually my cooking column. Before leaving Talkabout after 15 years of writing articles and columns, I did a series of articles on Getting On With It, about reshaping life, ageing, and how to cope with its inherent problems.
I would love to widen the scope of my writing. For many years people have been telling me to write about my family and upbringing which was a complex, sometimes sad, sometimes happy experience. Perhaps a bit late in my life – or not – I’m thinking of getting into freelance journalism. Everything HIV that has happened to me over the last 30 years has led to this. It has presented me with new opportunities and opened doors that had previously been closed to me. I am contemplating a course for 2024 – not a cheap thing to do, so I have to consider carefully. In the meantime I will continue to write. Am I self-opinionated? I hope so. Am I controversial? I hope so. Can I see both sides of an argument? I hope so! But most importantly, do I love writing? You bet!
The challenge of writing about 37 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 years 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!
The author at 65
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 (named after the first person to die from AIDS in Australia), 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.
Eve van Grafhorst was diagnosed with HIV and hounded out of Australia, but her legacy endures
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 (called St Christopher’s ward, due to people usually just “travelling” through it on their way to a dedicated ward) at St, Vincent’s Hospital In Darlinghurst. It is interesting to note here that the Sisters of Charity, who founded this hospital, put the hospital at the centre of HIV care very early in the epidemic, and also provided palliative dare through the attached a Sacred Heart Hospice. 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. Other 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.
Ready to do a quilt unfolding at the Government Pavilion, Sydney Showgrounds, around 1991. From left Peter McCarthy, Peter Gilmore, Bevan Lambert, Steve Thompson, Tim Alderman.
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.
Like many, I went on every drug or alternative trial that came my way. There are those who have described us guinea pigs as brave, or “heroes”, but we certainly didn’t feel like that at the time, despite it being a very selfless act. The thinking at such a desperate time was that…well, if it works for me, the benefit will flow onto everyone else! But there were, in the early days at least, more failures than successes. D4T:FAILURE…caused anaemia; P24-VLP:FAILURE…was hoped it would boost the p24 antigen – it did nothing: Goat Serum:FAILURE…though I did get a very scary skin rash from it; Vitrasert Implants: FAILURE…though due more to HAART eradicating the scourge of CMV retinitis. Were intended to leach Ganciclovir into the eye over a 9 month period, thus eliminating the need to have it injected into the eye regularly. Two minor operations to insert them, with an initial estimate of a 4% chance of developing cataracts. Turned out to be a 100% chance, thus further operations to remove the cataracts. Fun, baby!
I was shuffled onto the pension, and given rent subsidised housing by DOH (Department of Housing). 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 (Greek word which means “To Stick”, a treatment management group who help you maintain the impetus to take the billion pills a day (I was taking over 360 pills a week – anti-retrovirals, prophylactics, and pills to control side effects – at one stage) 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 (a cancer drug that reduces blood flow) 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! Scary how anyone you talk to can pick an anomaly – and stare at it while talking.
The next step, which sort of brings us up to date (this was 2011), 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. No sooner were we there than my retina detached (I had been warned to eventually expect this, due to the amount of CMV scar tissue in the eye) 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 23 years ago, and drink only lightly and socially these days. I adopted a healthy diet and exercise program 10 years ago when I started getting unattractively over-weight and inactive.I have turned my life around by adopting this course of action. In 2013 I attended Southbank Institute of Technology in Brisbane and obtained my Certificate III in Fitness. I hoped this would lead on to becoming a Personal Trainer for mature-age and disabled people both individually and in conjunction with my local gyms. I was almost 60 by the time I finished. Just in time for the next stage of my life.
In 2014 David and I called an end to our 16 year relationship. It had run its course, and with a 14-year age gap…I’m the older…we were both at different stages of our lives. It was amicable, and we are still friends. However, it was the start of a year from hell. A disastrous 60th birthday followed, them an attack of shingles that was the worst Royal Brisbane Hospital’s Infectious Diseases Unit had ever seen, leading to an infection in the blisters that landed me in hospital with blood poisoning, followed by two weeks with a portable drip through their Hospital In The Home initiative (Neuralgia and numbness from this are still a problem 5 years down the line). Then our first rescue dog, Ampy, died. I was also faced with some serious decisions. With the parting of our ways, I could no longer afford to live in the house we were in being on a pension, and of the options open to me, returning to Sydney to move in with an ex from the 80s was the only viable one. I also made a nerve-wracking decision to have my blind eye removed, and replaced with a prosthetic. After years of ongoing problems with it, was time it came to an end, and the operation occurred in early 2015 just prior to my other dog, Benji, and myself returning to Sydney.
I stayed in Sydney only for as long as I needed to be there. I hated it! A cold, over-populated, rude city. Within 12-months, we…I include my housemate, who also came with me…moved to the Central Coast, where life is quiet, and more civilised. Life goes on…I’ve lived long enough now to start seeing the truth finally being told about many aspects of HIV – the high toxicity and ongoing problems caused by AZT, exploitation by Big Pharma, misuse of funding, unresearched and often inaccurate advice on therapies and treatments, the rushing through of many treatments that proved detrimental to those who took them. It’s time to clear the air, and take the sentimentality out of an often rose-coloured glasses view of the epidemic.
37 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.
As many of my blog followers would have noticed, I put a slightly perverse twist on the word “history”.
I love history, and always have. I excelled at it at school, right from the first day of what was then “Social Studies” at high school, which then morphed into history. As soon as the teacher started on about ancient Greece and Rome, I was hooked.
Ancient Greece & Rome – the beginnings of an addiction to History
In first form at High School, I was given the more complicated history projects, as Mrs Wilson, my asocial Studies teacher, knew I’d do the research, and put it all together in a professional way. I always scored high marks in history exams, and entered my School Certificate exam at Ordinary level for history, coming out with an Advanced pass. I had the ability that, even if I couldn’t recollect exact dates of events, I could fill in the gaps with a whole raft of other facts and figures surrounding the event. It’s a shame I can’t say the same for Math, Geography & Science – all subjects I had no love for.
This love of history has been with me all my life, and shows no signs of slowing. One of the great things I have applauded in recent years has been a strong movement towards telling the truth about history. Like many others, I grew up with a sugar-coated view of history. It was almost like we had to be protected from the very events that have placed us where we are right now! Yes, wars happened, but it was about the actual battles and the total outcome that was taught, not the actual human cost, the great blunders that cost lives…and I point directly at Gallipoli here as an example…the cities and towns and villages that were obliterated, and the millions left homeless and wandering. It never spoke of the hardships of the battlefield, where survival was an unexpected turn for those caught up in the romantic notions of war sold to them to get them to enlist. We were never taught about the aftermath of war, the disabilities, the mental anguish whereby that supposed “return to normality” never happened. My own father, who was in New Guinea and Borneo during the war, never recovered from the savageries of war, and was very much a twisted man up to his eventual suicide in 1978.
The history I grew up with extolled the virtues of the wrong people, like the ever adored Winston Churchill, who is credited…controversially…with helping to win WWII. We were never told of his drinking, his depression, his arrogance, unpopularity within parliament, his many bad decisions that resulted in the deaths of untold hundreds of thousands of people…decision making from afar, with no concern for the losses. Likewise, the Holocaust was totally ignored, the long years of events that led to Hitlers rise to power, nor the staggering death legacy of people like Stalin, and Mao Tse Tung. These were names that were just dropped into, and pulled out of, history as if their existence had no consequence. With the release of records, and film footage over the last few decades, we now have a clearer picture of the events that shaped the world around us.
But having said that, history is not just about the major events that happen around us, both in the past, and now. If we take the word ‘history’ literally, what has just happened is, in the blink of an eye, history! It is not just about what has happened in the past, but is happening right now around us, globally. The good…and the bad! Nor is it about great people, those with prestige and power. It’s about the tiny events by almost unknown people that has a long-term affect on the world. It’s about inventions, taking chances and risks, writing notes and letters, or just being a bit out-there and wacky. History isn’t just about all the serious shit – it has, quite often, an amusing and eccentric side to it.
And this is what I look for!
How many of you would read my blog posts if they were about the known, and mundane! As a gay man, I have lived through some major milestones of gay history, everything from the activism of the 70s and 80s, to the ghettoisation of the lgbt communities, to the devastation of HIV/AIDS, and the advent of Gay Pride.
However, like the world view of history, I don’t want to bore my followers by banging on about events they are already aware of. We all know about Stonewall, Gay Pride, Larry Kramer and the beginnings and politics of HIV. We know about Harvey Milk et al. Amongst all the night club dancing, the drugs, the sex, there was…and is… a plethora of other events happening. In many respects we have a bit of a blinkered view of our history on the gay scene (déjà vu?), seeing it mainly as events that happened from the mid-70s onwards. As you would have seen from the scope of my posts, the affects of both out-there and closeted gay people has been around for centuries. It is the weird, wacky, eccentric, brilliant, sad, funny, serious, fun, and downright fascinating shit that makes gay lives the earth-shattering influence they can be. That is what I want YOU to know about. If I can make you gasp, roll your eyes, or laugh then my aim has been a success.
I know there are politically correct individuals out there in Gayland who probably take offence to my calling the category “gay” history…and I don’t care, quite frankly. Their bleating falls on deaf ears. I identify as a GAY man, and as such use that term to define everything I do. However, that does not make me narrow-minded in the scope of what I post. I do not change terminologies to suit my own agenda. If an article is on queer, or trans, or homo, or bisexual…or any other terminologies within our community…culture, that is how it will be posted. I might be a narky old 80s queen, but I can assure you my world view is wide, and inclusive. The very multi-directional way our community has evolved is part of its…history.
Finally, I have to say I have loved putting these posts out there. It has indeed been an education for me as well. Who knew there was this much weirdness out there! And as gay people there is one thing I do know…the weirdness will never end as long as our community, and the individuals within it, are out there.
Bring on the Gay History!
Tim Alderman 2019
The blog owner Tim Alderman, with one of his two adored Jack Russells. They inspire me every day.
For many of his generation and beyond, Lex Watson was the face of gay activism in Sydney.
For many of his generation and beyond, Lex Watson was the face of gay activism in Sydney. He was a foundation member of the Campaign Against Moral Persecution (CAMP), the organiser of the first gay rights demonstration in Australia, a longtime passionate advocate of homosexual law reform and of anti-discrimination legislation, a pioneer AIDS activist, and in later years, a keen advocate for the preservation of gay community history.
Lex Watson addressing gay rights activists setting up their ‘Gay Embassy’ opposite former NSW premier Neville Wran’s home in Woollahra to protest against Club 80 arrests in 1983.
CREDIT: ADRIAN SHORT
Alexander Watson was born in Perth on January 29, 1943, the son of Alec Watson, a medical practitioner in Geraldton, and his wife, Margaret (nee Newnham), a nurse. Lex started his education in Geraldton, then the family settled in Perth, where Alec became a well-known surgeon.
Despite his parents’ wish to place him at Geelong Grammar, or the King’s School in Parramatta, Lex was determined to go to Perth Modern. There he developed a lifelong love of languages, particularly German, and music, again particularly German, from Beethoven to the present day. At school he acted in Gilbert & Sullivan productions, directed by a teacher who remarked that he was ‘‘rather self-confident and arrogant’’, an observation often to be made of him throughout his life.
Lex Watson (left) and Robert French signing statutory declarations in 1983.
At puberty, Watson’s parents gave him a booklet on sex that contained a small non-judgmental paragraph on homosexuality. ‘‘So that’s what it is called,’’ he thought. He then looked up homosexuality in the school library, but all the texts he consulted talked of disease and perversion. Watson’s response was, ‘‘Why, they’ve got it wrong!’’ but it was a defining moment in his life.
Watson won a scholarship to the University of Western Australia, where he started in 1960. He did an arts degree and studied history and philosophy He read John Stuart Mill, whose classic liberalism became the touchstone of his life and later activism. He later became a supporter of the Council of Civil Liberties.
For his honours year, Watson transferred to the government department at the University of Sydney. It was there that he worked for the remainder of his academic life, teaching Australian politics to hundreds of students, many of whom became academics and political activists themselves.
The homosexual law reforms in Britain in 1967 sparked Watson’s interest and he became involved with reform in Australia because ‘‘it was needed and therefore you did it’’. He was in Canberra in 1970 on the weekend of the formation of the ACT Homosexual Law Reform Society and joined up. He then attended a public meeting in Sydney, organised by the Humanist Society, which formed a HLR sub-committee, which he became a member of.
Lex Watson as the Empress of Sydney in 1982.
These moves, however, were ‘‘wiped off the table’’ by the announcement by John Ware and Christabel Poll in September 1970 of the formation of the Campaign Against Moral Persecution (CAMP), the first openly homosexual group in Australia. Watson became a foundation member, and in early 1972, along with Sue Wills, became a co-president.
Ware credited Watson with making the organisation political, and it was Watson who organised the first gay demonstration, outside the Liberal Party headquarters in Ash Street, Sydney in October 1971.
Watson, as an academic, had contacts in the Liberal Party and got to hear of the challenge that conservative Jim Cameron was to bring against the federal pre-selection of Tom Hughes, after Hughes as federal attorney-general had raised the issue of homosexual law reform.
One of the major achievements of CAMP under Watson and Wills was highlighting the dangers of aversion therapy and psycho-surgery as then practised against women and homosexuals. That homosexual people then began to cease consulting practitioners for a ‘‘cure’’ for their sexual orientation was a triumph for CAMP.
Watson and Wills resigned from CAMP in October 1974 as the organisation concentrated more on its phone-counselling services.
Watson continued his activism and advocacy through newspaper articles in the gay press. In 1976 he, memorably and courageously, appeared on the ABC’s Monday Conference program in Mt Isa. Some of the audience were hostile, one member even pouring a bottle of sewage over his head. Watson maintained his composure throughout and won over the audience.
With the assistance of fellow academic and activist Craig Johnston in 1980, Watson approached Barrie Unsworth of the NSW Trades & Labor Council after the University of Sydney staff union had passed an anti-discrimination motion in relation to gays and lesbians. Unsworth was receptive and had a similar motion passed in the council. The move was the beginning of Gay Rights Lobby (GRL) and a new push for homosexual law reform in NSW, as well as support for a bill to incorporate homosexuality under the terms of the Anti-Discrimination Act.
Watson, in a dispute over tactics and his administrative style, fell out with GRL but that did not stop him and his fellow activists continuing to work together. After the police raid on Club 80 in 1983, it was Watson who suggested that the activists sign statutory declarations admitting to having committed buggery and to present them to the vice squad, seeking arrest. Watson was one of the first to present but the police had been forewarned and refused to make arrests.
He was a member of a delegation to premier Neville Wran in May 1984 on the morning of the introduction of his Private Members Bill to repeal the ‘‘buggery’’ provisions of the NSW Crimes Act. Watson attempted to persuade the premier to introduce an equal age of consent clause and when Wran refused, he argued for the inclusion of protections for persons between the ages of 16 and 18 years, which Wran enthusiastically agreed to. A new clause had been typed onto the bill when it reached the floor of the Legislative Assembly that day.
In 1982, the Chameleons social group had crowned Watson ‘‘Empress of Sydney’’, the first time for someone from outside the ‘‘drag’’ industry. He was proud of his only appearance in ‘‘drag’’, sporting a black velvet strapless gown. He wore the gown to the ‘‘Gay Embassy’’, a caravan that had been set up in front of the premier’s house in late 1983 as another move to push the law reform agenda. The embassy had been Watson’s idea.
Watson became aware of the problem of HIV/AIDS in 1982. He later became involved in the disputes with the Blood Bank, pointing out that the only solution to the implementation of sound public health policy relating to HIV was for the medical profession to engage in a dialogue with the gay community. He, and others, set up the AIDS Action Committee which, following federal government funding, morphed into the AIDS Council of NSW, of which Watson became the first president.
Watson later stepped down as president although he stayed on the committee. Truth to tell, he was not the greatest of administrators. He operated best as an individual activist, always sharp and on-message.
For many years Watson was also a block captain of marshals at Mardi Gras parades. In 2010, ACON awarded Watson and Wills their GLBTI Community Hero Award marking the 40th anniversary of the formal foundation of CAMP, and they were thrilled to ride up front in the 2011 Sydney parade.
After retirement from the University of Sydney, Watson became involved in the Pride History Group, Sydney’s gay and lesbian history group. He was president at the time that he died, assisting in the organisation of a history conference, set for November, on homosexual law reforms, his major life’s work. The conference will be dedicated to his memory.
Lex Watson is survived by his sister Wendy, brother-in-law Richard and nephews Nicholas and Ben and their families.
The harsh reality is that the only people really qualified to comment on long-term survival are – long-term survivors.
Being a HIV long-term survivor is a bit like being a Vietnam veteran…more often than not you feel delegated to the sidelines of history. Like the Vietnam vets, we fought a socially unpopular and unacceptable war, and like them, our continuing presence is a reminder of things that many would sooner either forget, or just not acknowledge.
That is a harsh – and raw – assessment, and I can see hackles rising already amongst those who choose to observe it through rose-coloured glasses. The harsh reality is that the only people really qualified to comment on long-term survival are – long-term survivors.
On June 5th, 2018…if it’s occurred in the 5 years since, I am unaware of it…was HIV Long-Term Survivor Awareness Day. I can’t say that I didn’t personally feel a certain…pride…not the right word, though I’m hunting for the right one…that at last there was an acknowledgement of my part in HIV history. I posted the event as a Facebook status update, and I’m truly humbled by the response from my friends, and at the same time reminded that there are others in my current social “circle”who are also chalking up survival terms equal to my 36 years. Yet despite the acknowledgement, the most telling word to me was”Awareness”! And perhaps that word, more than any other, takes us back to the start of this article. It is an important word, as it suggests – very strongly – that we are the forgotten, those of HIV “past”, and our very existence needs to have attention drawn to it; that there needs to be a reminder that we didn’t all succumb to the ravages of AIDS.
Reality hurts, doesn’t it! And that really is the reality of long-term survival. To be honest, I don’t think anyone knows what to do with us, apart from just leaving us alone to muddle through. On the general overview of HIV history, and considering the numbers of those who died – and continue to – as a result of AIDS, the numbers of us who have survived 20 years or more are small. We are now a disparate group, spread far and wide by the great diaspora that resulted from HIV diagnosis in the day. We are no longer concentrated in the areas of ground zero for the HIV/AIDS pandemic, and in many respects that is a major reason for our being in the background of modern day HIV.
I don’t want to call this “awareness” day tokenistic…but, recognition of the sheer tenacity of HIV long-term survivors has been a hell of a long time coming! Considering that those of us with early diagnosis, who were still alive in the late 80s/early 90s were already long-term survivors…it’s recognition that is – like so much in HIV – well and truly overdue!
I have attempted to convey the harsh reality of long-term survival in past articles, and in my talks when I was a speaker for the Positive Speakers Bureau (PSB). Myself, and other speakers, whose history went back to the key points of HIV in Sydney were always in demand, as we were the living history of HIV and AIDS, the harbingers of the tales of horror, stigma, discrimination, political and religious turmoil, and the community response to the pandemic. But over time – I was a speaker for 12 years – I saw this group slowly dropping away for various reasons, and by the time I chose to retire from speaking I was one of the last of these “history” speakers. By that time, I personally felt that HIV in its modern guise was leaving me behind, lost in its dust as it moved into new territory. A HIV diagnosis still came with its fears and insecurities, but it was no longer a death sentence.
To be honest, I don’t think anyone knows what to do with us, apart from just leaving us alone to muddle through.
So, who are these people who are having “awareness” drawn to them? I can only speak for myself; can only put a personal perspective on HIV long-term survival. Perhaps the reality of it has always been something I have downplayed, in an attempt to NOT come across as a victim! The true reality of the horror years was TERROR!
My CMV diagnosis in 1996 filled me with terror! It was the ultimate reality that I was now on borrowed time. But even before that time, it was terrifying to get what was a death sentence in 1985! It was truly terrifying to watch the horrendous deaths happening around me on a daily basis! It was terrifying to know that that was what could be in store for me! It was terrifying every time I visited the doctor, every time I had a blood test! It was terrifying to know that treatments were limited, and of short duration! It was terrifying to be subjected to the side-effects of huge dosages of same treatments – side-effects I still live with today! It was terrifying visiting friends and lovers in hospital, knowing each kiss could be the last! It was terrifying to find myself losing weight, and trying to hide the fact under baggy clothing! It was terrifying to find myself the figure of HIV discrimination in my workplace, and powerless to do anything about it! It was terrifying to realise I could no longer go on working! It was terrifying after a lifetime of independence to realise that I would need to go onto DSP, and housing subsidies! It was terrifying watching myself head towards alcoholism, chain smoking and life in the fast lane to deal with everything that was going on – uncontrollably – around me! It was terrifying to find myself in hospital for the first time – a collapsed lung! It was terrifying to lie there for 2 weeks, having Sandy from the Oxford Hotel visit another friend and suddenly stumbled upon me! It was terrifying to see – very briefly – the look in her eyes! It was terrifying to think I could be there for reasons of HIV – yet denying it…I would go home…life would go on…yeah…right! It was terrifying to live the 24 hours between my possible CMV diagnosis, and its confirmation! It was terrifying to know that this was a reality- AIDS! It was terrifying only hours after that, getting off a bus at Prince Henry Hospital at La Perouse, and wobbling towards admissions…and thinking…what the fuck! It was terrifying to realise the reality of your health status; 10 CD4 cells, 48kgs weight…could that be right? Chronic candida, chronic anaemia, chronic CMV retinitis! It was terrifying to realise I was dying! It was terrifying to lie again in a hospital bed with nurses, and drips, and medications…and wondering if it was all worthwhile! It was terrifying finding myself at POW the next day, having drugs injected directly into my eyes! It was terrifying that day…and every day after! It was terrifying to sit in that waiting room days later, holding the hand of another guy going through the same thing, trying to reassure him as he wept, a reassurance I didn’t feel myself! It was terrifying trying new drug combinations, not knowing if they would be successful, or in time! It was terrifying to realise I accepted my fate, and was not frightened! It was terrifying to be told the combination had worked, and I’d soon be going home! It was terrifying to realise that I felt robbed, felt that I didn’t deserve to be spared that which so many I loved had not been saved from! Terrifying to realise I was going back to a world I no longer knew! Terrifying to realise that in many respects, I was now a freak…someone who just didn’t fit in! It was terrifying to know that no one, no individual, no organisation, was prepared in any way for the return of the living dead! It was terrifying to sit at home…lost, alone, isolated, unsure, unknowing, afraid! It was terrifying to have the reality of ongoing life, of being whisked from deaths door! It was terrifying going through the panic attacks, the anxiety, the depression! It was terrifying to discover that every one was so unprepared for “us” that necessary help was not available when we needed it! Terrifying to be taking massive numbers of drugs – 3-4 medications, with anywhere from 4-6 pills for each medication, 3 times a day (with dietary and time compliances on them), plus prophylaxis, plus pills to control side effects! It was terrifying to find I needed medication compliance counselling, return-to-life counselling, peer support groups, weekly clinics, specialists! Terrifying that I felt myself useless, at a loose end, disconnected! Terrified to realise I wanted nothing to do with life as it had been – so few friends survived the ravages of AIDS, and those not infected had no point of connection with me, and where I now was. I cut back my drinking, stopped smoking, adopted a healthier lifestyle, decided I wanted my life to head off in different directions to that which it had been going in! It was terrifying to find that there was no one to help me do that, and despite being at the forefront of a needs assessment project concerning the return-to-work requirements of others like me, the reality was that help was a couple of years away! It was terrifying to have lost the sight in one eye, and a good deal of the sight in the other due to the CMV, and learning to deal with that, and its uncertainties! It was terrifying to fall flat on my face on footpaths due to lack of depth perspective; tripping over tree roots, or low street benches, or falling down steps because I could not see the edge; It was terrifying going through the surgery to have Vitrasert implants put in my eyes to negate the regular intraocular injections, then surgery to remove the cataracts caused by same! Terrifying to get the Deca-Dorabolin injections to help put weight back on! Terrifying to return to a normal job – albeit temporarily – knowing that it made access to doctors appointments and hospitals (for drugs) very difficult! Terrifying to find myself collapsing in a gift store, and unable to use my legs…and even more terrifying to find the store owner dumping me in the gutter under the illusion I was a druggie…and everyone else ignoring me – then finally managing to walk again, only to collapse in the middle of Bondi Road on my way home! Terrifying to find I was losing my ability to walk a straight line, but drifted all over the footpath…and no one knew why! Terrifying going through many tests and scans- with dire predictions of what was happening in my head – to finally ascertain that THE virus had jumped the blood/brain barrier and was resident in my brain! The terrifying wait for it to resolve itself! Terrifying to go out to a pub for the first time after an 18-month recovery period! Terrifying to know I knew no one in the pub! Terrifying to go home with someone despite a previous very promiscuous life! Terrifying to get into a relationship again!
Terrifying! Terrifying! Terrifying! I could go on and on with the lists of terrifying experiences over this period, but the word count would be astronomical! Suffice it to say – terror had a name…HIV/AIDS! No one diagnosed these days will – I hope – ever have to go through it.
Survivor guilt was something that came later, after all the pandemonium of getting my health back on track quietened down, and left me with time to think, to mull over the events just past. It felt so unfair that I was still here! Felt unfair that, having prepared myself to die, it hadn’t eventuated, and I was left to continue mourning for those gone, continuing to live thanks to the hoped for medications that others hadn’t managed to hang around for! It was unhealthy thinking, but it happened anyway! More counselling to reconcile that!
So – has the terror stopped? For me, not really! A detached retina, and complex surgery to replace it in 2013, and the removal of the blind eye -it is now a prosthetic – in early 2015 has reduced what was bad vision even further. I joke that every time I walk out onto the street, I take my life into my hands…but it is, in reality, no laughing matter! It is quite frightening! It restricts what I do in some respects, but I deal with it. However, the fears of further detachments – I had one scare recently – or anything else that may affect what little vision I do have is always there.
However, it hasn’t all been terrifying over the last 22 years. I’ve taken control of my own health, I’ve reeducated myself, and fulfilled a few frustrated ambitions. I’ve reconnected with some old mates through social media, and it pleases me to know that not all disappeared like many did. I’m in a happy place as far as everyday life goes.
I hope this gives those that bother to read it an “awareness” of what long-term survival is really about. It would be fulfilling if something could be set up to make us more visible, less confined to the sidelines of HIV. I don’t have an answer to that conundrum only to say that it should have nothing to do with sitting in a circle, knitting and discussing HIV! Now that is a truly terrifying thought!
“Sacrilege” may seem like a strange word to use in relationship to ones life. Its religious connotation is “the violation or profanation of anything sacred or held sacred” thus by a very loose expansion of the meaning – a human life, as it is, in many respects, regarded as sacred. Stretching definitions even further – and many would not be surprised that I don’t take it literally – infecting it with HIV could be considered a sacrilege, be it intentional or unintentional. The sacred has been violated! Also, as a HIV+ man, it is expected that I will follow a set of “rules” as dictated by various community groups, doctors and specialists! To totally ignore the expected, and go off down your own path would be considered by many to be sacrilege!
I can’t contemplate continuing to live with HIV without viewing it within the framework of my life! No war is without its battles, without its dark times, yet still seeing the light at the end of the tunnel! If I had to use a word to describe myself, belligerant comes straight to mind – but then I think to myself “That’s a bit harsh!”. Okay…cantankerous is one that has been used by those close to me, so that’s sort of acceptable, and it’s true! Curmudgeonly… a word I love, but I’m not really surly enough! So I’ll just stick with stubborn! I could claim that it’s a Capricornian trait, but it goes deeper than that.
At 12-years-of-age, my stubborn streak was already settling in. Though unrecognised by me at the time, it was a survival mechanism that was to serve me well for most of my life. It is only when I look back to 1965, that I realise what a testing ground it was: my mother left my father; a bitch of a housekeeper who was to forever change our family dynamics; and my father jumping over The Gap with Kevin, my brother – resulting in my brothers death – would have sent a less resilient person into dark depths that they may never have risen from! Considering the lack of psychological & emotional support available at that time, to have come out of that year relatively unscathed had to show a stoicism way beyond that normally expected from one so young. By digging my heels in, ignoring all the negativity around me, and just “getting on with it” – a philosophy I still embrace – I was to set in place a mental tenacity that was to impact my life for decades to come!
There was no love lost between my father & myself! Even prior to Kevin’s death, I had seen – and felt – a violent streak in his nature; almost a need to punish those who had a life contrary to his. He could be a right royal cunt! The only way I could establish my own independence – which had flowered rapidly after Kev’s death – was open defiance! He told me not to smoke…so I smoked; not to drink…so I drank; to get a trade…I went in every direction but; and to get my hair cut…I left it to grow – despite a threat, after an argument about it, to “knock my block off”! He even denied me a 21st birthday celebration, because he had been at war when his fell due…I organised it myself. My grandmother left me a small inheritance, and just after my 21st, I moved out of home, into my own apartment. After he remarried and moved to Vincentia (on the south coast of NSW), we had little contact. After his suicide via carbon monoxide poisoning in his car in 1978, I never cried a single tear – but just let out a massive sigh of relief! I was free! As the ultimate act of a true prick, he left me nothing in his will – it all went to my step-family! Just to show that they were all tarred with the same brush, directly after his death his sisters indulged themselves in a game of telephone harrassment against my step-mother. I was glad to walk away from them all!
As soon as the old man died, I came out! It is the one time my usual defiance was kept capped. I had seen what he wss capable of with my brother, and my survival instinct whispered to me to be quiet about this issue. Again, I had witnessed him & his mates yelling “poofter” out of the car window to some poor guy who did nothing more than wear a pink shirt! As I said – they were pricks! Stubbornness does not necessarily equal a death wish! Then, having stepped out of the closet, I megaphoned my life choice to all and sundry, including my employees. No one seemed particularly surprised! There were some in my workplace who were not impressed with my sexual preferences, and made no secret of it! My pure indifference to them was reward enough. My decision to desert the security of a regular job had nothing to do with my detractors…it was based purely on a desire to break free of a life I wanted to leave behind. But the curve balls were to keep coming, with no inkling at that time of the odd parallel path that both being gay, and being HIV+ were going to lead me down!
Even as I was coming out in Melbourne in 1980, snippets about a lethal cancer, that was killing gay men who frequented the saunas in the USA, were appearing in the local press here. I read them, and like many others, though not panicking, was left with a feeling of unease. That unease turned to immense consternation over the next couple of years, as the reports became more alarmist, and HIV crossed the ocean to our shores. By the time they developed a test in 1985, I for one was already stacking the odds – and not in my favour! In retrospect, this may have been a defence mechanism against coming up HIV+…that if I did, I was already prepared for it, and if I didn’t I could just breath a sigh of relief. The former proved to be true!
Back in the day, there was a severe lack of counselling, and given the sheer volume of testing results coming in at that time, was cursory at its best. When I went to get my result – and I don’t know why I made the presumption I did – the positive result was not a shock. These were strange (ethereal?) times, and for those of us admitting to our – then – death sentence, it was almost like belonging to a select club.
There was a two year window given at that time, between diagnosis and the advent of AIDS, leading, so they thought, to an inevitable death. Some didn’t make it to the window period, and my first friend, Andrew Todd, died at the end of 1986. I made it to the two year point…and was still very healthy. By then, the window for those diagnosed in 1985 had been expanded to five years, so the waiting game for many of us continued. Up to 1990 is a very convoluted journey, and I don’t want to rehash history that has already been covered in many writings, and is really outside the parameters of this article. I decided to make this a useful period, and did a number of trials. It was better than just sitting around and waiting. This was a time when I made my one bad decision regarding my healthcare – I allowed my doctor to – after a najor ethical battle with her – to put me onto AZT! There has been much written about AZT, and its history as a drug…which was not exclusively formulated for use with HIV. I am not a conspiracy theorist, but my thinking on HIV has always been a bit radical, and I, along with others, gravitate to the thinking that HIV and AIDS – despite our use of them as co-joined conditions – are separate illnesses, and HIV doesn’t necessarily lead to AIDS, but AIDS as an independent condition, brought about by the deterioration of the immune system.
So, I had a diagnosis of HIV, with no related conditions that would have rated a diagnosis of AIDS. Even with a CD4 count on the decline, I still had good health – which admittedly may have been a lot better if I wasn’t knocking myself around by chain-smoking, and chronic abuse of alcohol – until…I started AZT! Many of those still around from that time will acknowledge that the decline in their health status is directly parallel to starting AZT. It wasn’t nicknamed “human Rat-Sac”for nothing. It’s negative affects from then up until now are also well documented. Damaged nerves, liver & kidney problems, the leaching of calcium from bones, and other neurological problems can all be traced back to AZT usage. I wish I had stuck by my guns, and refused to use it! There is no evidence that it saved one single life. I wouldn’t have refused trestment with other drugs that came along shortly after – I didn’t have a suicide wish – but I have no doubt that if I had refused AZT, some ongoing problems I have now would not have happened. I have an undisguised hate of Big Pharma, and its tactics, and lack of ethics where it comes to flogging a drug, and how they went about flogging this incredibly toxic drug to a desperate and unsuspecting demographic is truly horrifying – more on this shortly.
So, dispite heavy smoking, alcohol abuse, long work hours, and a shit diet…I made it to 1990, and with my health still okay. I won’t say I was unscathed, as the relentless list of those who died over this time, with many more to come, was physically, mentally, and emotionally destructive. I am by nature – and experience – a stoic in the face of death. I accept the reality, and inevitability of it – but any sign of the existance of God in this obliteration was missing – no just, loving God would ever allow this! My conversion to Atheism was complete. However, the combination of all that was happening was starting to wear me down, and encountering on-the-job bullying by an Area Manager brought about my decision to leave the workforce in 1993, and go onto disability, and get a housing subsidy. It was a forgone conclusion back then that this was the road to take because – after all – none of us would survive for all that long. At this stage, under the most positive of thinking, I gave myself two more years.
I actually got to mid-1996 before it all started to come undone. I have written about the circumstances surrounding all the events that happened at this stage, so won’t repeat them here, but will give you an intimate insight into my thinking on my situation when I was finally admitted to Prince Henry Hospital in June, 1996. Given that I was already close to death when admitted, with a plethora of conditions that really should have killed me earlier, and that I really thought I would never leave there any other way than via a wooden box gives a good indication of how serious things were. It was in Mark’s Pavilion there that my stoicism, my acceptance of reality, possibly should have been tested, but instead gave me a calmness, an acceptance of my own potential death that I had pondered about prior to this. I was chronically ill, I was tired and in some respects, if other factors hadn’t intervened, death just seemed like such a pleasant, restful reality, leaving all that was happening behind, joining all those that I had loved and lost over the last 10 years. It was an acceptance of death that I wasn’t expecting to be quite so complete, so easy, so without fear.
But I picked my moment, didn’t I! Big changes were happening in the treatment of AIDS, and shortly after being admitted, not going down the road of death, that I expected to go down, I walked – well, taxied – out of Prince Henry. I exited that taxi into a world that was in no way prepared for the living dead of HIV. If I ever thought my battles were behind me, I could not have been more wrong. The next couple of years – a long period of recuperation – were intense. There was a seemingly neverending period of specialists, doctors, clinics, pharmacy, counselling, peer support groups, drug compliance groups, massive – and I mean massive – amounts of medication, side effects, dental work, anxiety and panic attacks, and drug trials. It was a time where one wanted to initiate great change in the direction of ones life – with no one there to assist. Change had to be fought for, had to be forced. All these community groups gathering money and prestige, sitting in meetings and forums, listening to the likes of me yelling about what we needed…and just turning deaf ears! It was a frusteating period where everything was years behind where it needed to be, and if you wanted to get on with your life without being trapped in the system, you had to do it under your own steam! So I did!
Some volunterr work, some work in the community sector, a flowering writing career that demanded and exposed…when I eas “allowed” as one didn’t question the system – led to a brief period of full-time work – that didn’t help my health at all – then onto university & TAFE to experience at last that which gad been denied me in my youth. This led to an interesting period of experiences, from spending 12 years talking about the HIV experience through the Posituve Speakers Bureau, to 15 years writing for “Taljabout” magazine and various other publications, starting several businesses – the most recent of which was destroyed by the GFC, to where I am now – happy, balanced, and reasonably fulfilled.
However, the last few years haven’t been without its challenges, and my mental tenacity, combined with a fairly laud-back approach to life, have seen me get through things without any apparent negativity. I do health care on my own terms these days, because if one just relies on mrdico’s, one would rattle like a pill bottle. I want less pills, not more! About 15 years ago, I halved my HIV medications. I have been waiting for some red-faced, fuming doctor to lecture me about it (has no one realised how rarely I get scripts?) but no one ever has. In the interim, my blood readings get better and better, with CD4s on the rise, and an ongoing undetectable viral load. Okay, I no longer smoke – gave that up in ‘96, drink bugger all, have turned vegetarian, and exercise daily, but nothing else. Big Pharma be fucked! Your drug resistance tests – a farce! You just don’t want people on old drugs! Over-prescribing? You bet you do…big time! I wouldn’t trust you as far as ai could kick you!
Have I mentioned my shit vision? Whoops…overlooked that. Blind in one eye thanks to CMV (also covered in articles on my blog), and almost blind in the other. The most major decision over the last couple of years? Having my blind eye removed voluntarily, and replaced with a prosthetic. Does it stop me getting around? Not fucking likely! I might be slow, but I get there! I have a white cane (laughingly called my whacking stick), but rarely use it. I walk the dogs, do the shopping, get to gym! It might be done with a slight feeling of nervousness, but it gets done.
I don’t hold any grudges. What has been, has been! In a way, I thank my father for the rough younger years. It gave me a set of survival tools that have served ne well – and still do – throughout my life. Maybe I was born in an auspicious astrological period, or maybe my natural survival instincts are genetic, endowing me with stoicism and mental tenacity! Whatever it is, it has seen me through nicely! Life is to be enjoyed, and despite the occasional downs, it should be lived to its fullest. Just step outside that square, and do it on your own terms!
Sylvania – a suburb in the Sutherland Shire, South of Sydney – in 1954 was, to a child with any perception, an idyllic place to grow up. Betty and Joe, my parents, had bought a huge half-acre property for £100 around the start of 1950.
The family home at 69 Melrose Ave, Sylvania. Joe purchased the half-acre block of land in the early 1950s for £100, and built the house himself for a cost of around £1,000. The property sold for $18,000 in 1966. The block was subsequently sub-divided into a battleaxe block, and a house now sits on what was our backyard. The new owner did extensive renovating and remodeling to the original house, but paradoxically, Joe’s original brick front fence remains. At one stage, he had a house-name sign made, naming the house “Barronjoey”. The reasoning behind this would seem to be that there is a Barronjoey Road in Ettalong Beach, where Gotdon’s original weekender was – and it is a co-joining of both Betty’s family name “Barron”, and his nickname “Joe((y)
Before proceeding with the building of the house – said building to be done mainly by my father – they built a garage. It would eventually house a car, but for beginnings was to house them, and the newly born me.
I was, from the time of my birth, fairly good – at leadt as good as a baby can be. I spent most of my days asleep, making appearances when visitors arrived by climbing up on my cot and perring at guests through the curtain that divided the garage in half.
Betty and Joe, i think in mum’s backyard at Leichhardt, before they married.
Mum was a Methodist, though denying any belief, and dad was, by hus own reckoning, a lapsed Catholic. This could have caused consternation as to which religion I was to be raised in, especially with the Catholic side of the family still being fairly devout.
But dad’s parents were pretty well out of the picture by this stage either having died, or been consigned to a sanatorium (so I was told), so there was only mum’s family left to be appeased.
On our way to school – in the front yard of the Cook family, opposite us in Melrose Ave. From left Peter Cook, Valerie Cook, myself.
To fit in with the local community, the majority of who were Congregational, I was christened into the Congregational church at Sylvania Heights. Religion was never forced down my throat, so attendance at church was somewhat sporadic for our family.
The Sylvania milk run was owned and operated by Eadie and Burt Samways, one of the areas more affluent families, who resided directly across the road from our slowly evolving home.
The Samways lived in a 2-storey abode, with stables for the horses that drew the milk wagons at the rear, and a large semi-circular drive that centred on their front door.
Robert John Pickhills, about 1957.
The front gardens were full of Gardenia’s, and one of my most eagerly recalled recollections of growing up in Sylvania was the perfume of Gardenia’s and Jasmine filling the air in the spring, and summer heat.
The dirt road threw dust up into the air as the occasional car sped along it, and it was the duty of my beloved and devoted dog Trixie to ensure my safe crossing of it, to visit the Samways, who were my Godparents.
Myself in the front yard at Sylvania. The Samways house is in the vackground. The fence that is there is soon to be replaced by a brick one. The boys in the background are from the Ball family. The lived in Corea Ave, and had one of those local “shabby” houses, with holes in the fibro walls, and a front yard full of long grass, and rubbish. The kids always look disheveled, and unkempt. The Johnson’s house had not yet been built, directly across the road.
Sylvania was home to 2 churches. There was the obligatory Catholic – though if anyone living here was a member of it, they never admitted to it – and the Sylvanua Heights Congregational Church, of which the Samways were highly regarded members. It is to their honoured memory that they were not pious biddies, just honest, hard working people who believed you were judged by example, not by belief.
Winters in this idyllic suburb were crisp and cold. The frost underfoot leoft playoful footprints as of ghosts – created by walking backwards in ones own footprints, so that they seemed to disappear into mowhere – and the open fireplace in the lounge room was warm and welcoming, inviting one to cook toast or heat marshmallows in its glow.
Me in my Gwaley Bay Soccer Club outfit. I hated sport, and this was temporarily endured to keep Joe happy, thinking he had a “butch” son. I also had to endure tennis until they finally gave up subjecting me to this. I was also in the Congregational Churches Boys Brigade – though I quite enjoyed that.
It was an invitation to family love and warmth that was to only last a short while. The wireless (valve radio) was the centre of our household, until television took its rapacious hold in the early 60s. It sprouted serials in the morning to get mum’s day started, and a deranged sparrow – Sammy, by name – and a Jiminy-styled grasshopper – called Gerald – saw me off to school in the mornings.
Summers were hot, and I roamed the streets shoeless and shirtless, being tanned the colour of dark brown leather. Trixie roamed the streets with me, and to see either one of us was to see both, as we were, from the very geginning, inseparable.
Myself and pop (William Barron) at Ettalong Beach in the latter half of the 1950s.The local store, or general grocer as they would now be called, was a recyclers paradise of smells and tastes. Armed with the families shopping list, and a commodious trolley, I would venture there to shop for mum. Old jars were returned, to be refilled with peanut butter, Vegemite, honey or jam. Egg cartons were refilled, and basic commodities such as sugar, flour and tea were weighed out into paper bags. Cheese and cold meats were cut to order, and for a mere sixpence a young boy could buy a bag of sweets that could put a smile on the face of any dentist.
Saturday was baking day, and I, along with all the other young rogues in the street, went from house to house, tasting each cooks soecialties. Banana pikelets, pumpkin scones, iced cup cakes, Cornflake and Anzac biscuits, lamingtons, jam tarts, vanilla slices, neenish tarts and butterfly cakes were all sampled along the way. On this day, mum would bake pies for the coming week, sometimes steak pue if meat was affordable, but always apple, or apple and rhubarb to go with the Sunday roast. Mum’s father loved coconut tarts, so if a visit to nana and pop was on the cards, a batch of these could be smelt baking in the oven.
Kevin and myself on our adjacent neighbours front porch. The house was owned by Jack & Olive Gill.
Of dad’s family, very little was known. The family roots would eventually be traced back to the 1500s, through Yorkshire and Lancashire (mum’s family through Cornwall), with my Great Grandfather Frederick William Pickhills, my Great Grand Uncle George Rickinson Swan, and my Great Grand Aunt Clara all arriving here from the 1860s.
Life in “Chiswick”, in Sydney’s northern suburb of Chatswood, was strict, and dad, though opposed to war, took advantage of the call-up to escape the family squabbles and bitching. He fought in Borneo and New Guinea, though in the mechanic’s corp, not as a soldier.He earned himself the two service medals, and managed to depart from the army with an Honourable Dischsrge. He left the world of war behind him, attended TAFE (then known as a trchnical college, or atech, for short) to become a carpenter, then proceeded to spend most of the remainder of his life as a grease monkey.
Pop Barron (William Barron), probably at Ettalong Beach where their son, Gordon, owned a weekender before moving to Morrisett.
Mum’s family were later traced, with no thanks to her, as she had no intetest in her families roots. William and Mary Barron lived in the inner-city suburb of Leichhardt. They were a kindly, grandparenty couple, who doted on their grandchildren. Pop’s mother – Emily Rule – was still alive when I was a kid, and my recollections of her are of standing by her bed in a nursing home, and receiving handfuls of tiny shells, pennies and half-pennies from this old, wrinkled woman. The shells were used to add weight to the milk jug covers she crocheted, and were stitched around the edges of the completed items. Mum had one sister – Gwen, and two brothers – Les, and Gordon.
Where my parents met, and the general course of their romance that eventually led to marriage is a story that was never related to me. The only photographs of them show a happy, smiling couple either in the backyard of mum’s home, or on the steps of the church where they were wed. If they were ever in love, which it is supposed they were, it was never particularly obvious to me as I grew up.
Nana Barron (Mary Collins) probably at Ettalong Beach.
Affection was not easily given by either parent, and the words “I love you!” cannot be recollected at all. However, it was a reasonably happy childhood, spent in a happy place. That problems existed was vaguely unsettling to me, for as little as mum and dad realised it, they had given life to a sensitive, intelligent child. Being aware of the workd around me, and being aware of my capabilities, and the potential life held for me was no easy matter. Neither parent encouraged the artistic side of my nature, that was evident from a very young age. In fact, dad seemed in fear of it! This fear and chaining of his own nature wss to have far-reaching effects on my life as I developed.
My grandparents regularly went to what was referred to as “the weekender”, owned by their son Gordon, at Mortisett, on Lake Macquarie. It was in this quiet, remote retreat that I found the most happiness, and a side to my nature that was to have a blossoming later in my life. The old weatherboard house had no running water, no electricity or gas, no sewerage. For a child growing up with such modern conveniences always to hand, this was a world of wonder. Water was collected in a huge, corrugated iron rainwater tank, with a layer of kerosene floating on its surface to prevent an explosion of mosquito’s. Lighting came from methylated spirit hurricane lamps, the refrigerator ran on kerosene, and cooking was done on a huge cast-iron fuel stove, or on a Primus. The stove never went out, and if you wished to bathe, water was boiled in a huge copper vat in the backyard, and carted inside to fill the bath. Bathing was in order of age, from oldest to youngest. The toilet was outdoors, at the end of a fairly long path. You had to take a lantern with you at night, and keep an eye out for red-back spiders. Simpler nightly ablutions were attended to by using a chamber-pot, kept under the bed.
William & Mary Barron with great grandchildren Gregory & Jeanette (standing) and baby (name unknown). These are the children of Stan & Elsie Barron. Stanley William is the son of Les & Jean Barron. Photo taken circa mid-1960s..
Dad and pop would go out fishing in the early hours of the morning, and often returned with catches of flathead, bream or leatherjacket, lobsters, mud crabs or prawns. Nights were spent around the lino-clad kitchen table, playing endless games of dominies or cards, and swatting mosquitoes. These were Elysian days, the memories of them always returning to me when I was in need of a happy childhood memory.
As I’ve noted before, it is difficult to piece together the everyday lives of people from 150 years ago, using a disjointed set of records that covers just sporadic moments in their lives. And so it is with my Great Great Grandparents – Rickinson Pickhills and Elizabeth Appleyard – though what we do have provides an interesting, insightful, and poignant story. The question that I asked myself as I collated the records and miscellany of their lives is – did Elizabeth realise just what was ahead for her when she married Rickinson?
St Peter’s Cathedral, Bradford, Yorkshire
Rickinson was born around November 8, 1811 at Bradford, in Yorkshire, and Christened on the 8th of November in St Peter’s Cathedral in Bradford, inheriting his mother’s maiden name as a Chritian name – something I am eternally thankful for, as it makes name searches easy!. His parents, Joseph Pickhills & Clara (Clarissa) Rickinson – his mother was previously married to a John Brown, with no issue – and his granmother (Margaret Moorsom) and grandfather (Roger Rickinson) were from well-established, and highly respected families from the Robin Hood’s Bay/Whitby/Fylingdales area of Yorkshire. He had one brother (Seth (1808-1859)), and one sister (Priscilla (1804-1873)). Apart from Rickinson, they were not prolific reproducers, with Seth having only one son, Alfred (who was to become a Johnsonian Baptist Minister – see his story here https://timalderman.com/2012/01/30/the-reverend-alfred-pickles/ – in Rochdale, Lancashire and Towcester in Northumberland), and Priscilla never marrying, but becoming companion and housekeeper to her nephew for many years until he married. Rickinson’s age also varies in some census: in the 1841 he is noted as 27: In the 1851 as 39; 1861 is difficult to read but could be 50.
Rickinson’s Christening record. My interpretation of this record is that his father, Joseph, lived in Bowling, Bradford, and his occupation was as a (wool) comber.
Elizabeth Appleyard is a harder story to follow, and research is ongoing. We have what we think is her baptism record, on 22 May, 1825 at Farnley-by-Leeds in Yorkshire, with William Appleyard and Sarah named as her parents. However, gauging from census records, we are deducing that she was born around 1822, and baptised much later – a common practise back then. We know she was underage when she married Rickinson. We certainly know her father’s name was William, from her marriage certificate, but on no actual documents is her mother named. At the moment, we are thinking it may possibly be Sarah Lamby, as the dates and places fit. The census records tell us that she was born in Bradford (1851census), though in the 1861 she gives it as Clayton. There appears to be no census records for her under the name Elizabeth Pickhills in the 1871/81/91 census, though we know she used that name up until her death. The 1901 census lists her birth town also as Clayton. As to age, it is noted as 19 in the 1841 census; on the 1851 as 28; 1861 as 37. We know that in the 1841 census (taken on 7 June) the following instruction was given “The census takers were instructed to give the exact ages of children but to round the ages of those older than 15 down to a lower multiple of 5. For example, a 59-year-old person would be listed as 55. Not all census enumerators followed these instructions. Some recorded the exact age; some even rounded the age up to the nearest multiple of 5”, though seeing as Rickinson is stated as 27, it would seem that rounding down wasn’t done on this form.
Rickinson and Elizabeth married on the 29 January, 1840 at St James Church, Halifax.
St James Church, Halifax.Marriage certificate for Rickinson & Elizabeth
There are a couple of things of note on the marriage certificate – Rickinson is at full-age, but Elizabeth is a minor; his rank or profession is listed as a “Gentleman” from Halifax, and she is listed as being from Northowram; Joseph Pickhills (Rickinson’s father) is also listed as a “Gentleman”, while William Appleyard is listed as being a “Worsted Stuff Manufacturer”. This was considered a good profession (it is possible that William conducted his business from Old Dolphin), and really seems to indicate a marriage between two reasonably well-off families, though otherwise would seem to be the case. There are three very interesting events that indicate that all may not have been as it seems!
In 1839, their first son, George Rickinson Swan, was born (he emigrated to Australia in the 1858, and died in Bourke, New South wales, on August 13, 1912 from Senile Decay (Dementia or Alzheimer’s), and was buried in Bourke the following day. Unfortunately, all the grave markers in Bourke cemetery were destroyed in a severe bushfire, so their actual burial plots are unknown.. He lived an amazingly interesting life there, and his story is yet to be written). He married Ellen Fanning on February 18, 1862 at Port Eliot in South Australia. He was a steamer captain on the Darling River, resided in Goolwa, South Austealia, and Bourke New South Wales. They had no children.
Captain George Rickinson Swan Pickhills
By the time they married in January 1840, Elizabeth was 2 months pregnant with their second son, William Moorsom (given his second name from his great grandmother, Margaret Moorsom, he joined the Royal Navy at 14, and dird from Cholera in Bengal, India in 1866. His story is here https://timalderman.com/2016/06/26/henry-moorsom-pickhills/). Whether this caused any scandal or not, we will never know. The third interesting event for 1840 was that Rickinson declared insolvency on September 11, 1840. For what reasons, we do not know. It would appear that financial difficulties started early on in their married life.
Rickinson’s Insolvency, Birmingham Gazette, September 1840.
By the time of the 1841 census, they are listed as living in the district of Fold, and George and Henry are listed with them. Rickinson appears to be given the profession of “agricultural labourer”. Also, note that in this census, the family name is spelt as “Pickles“.
We can see from all the following records that the family moved around – a lot! One assumes it was for work purposes, though it is possible that Rickinson was just an unreliable employee.
Catherine was born on January 13, 1842 in Halifax (she married Jurgen Nickolas Andreas Knoop (1840-1900) on February 16, 1864 in West Derby, Lancashire. They had one daughter, Clara Priscilla Marie (1869-1871). Catherine’s death date is unknown at this time).
Jane was born on January 1, 1844 in Northowram. She died on August 6, 1844 in Northowram from “Disease of the Liver”. Present at her death in Northowram village is John Appleyard. It is still to be ascertained if this is Elizabeth’s brother, or an uncle.
Edward was born on November 1, 1845 in Halifax. He died on April 30, 1846 in Halifax of “Pneumonia, 7 days certified”. Rickinson is listed as an “Attorney’s Clerk”, and was in attendance at the death.
On the evening of November 5, 1846 a James Greenwood broke into the “lonely house in the neighbourhood of Halifax”, belonging to Rickinson & Eluzabeth, in the absence of the family, and stole 2 pistols, 3 dresses, and other property. He was charged, pleaded guilty, and sentenced to 18 months hard labour.
York Herald, 20 March 1847
Charles Edward was born in 1847, in Halifax. He died on February 15, 1869 on the Murray River, Victoria, Australia. He was visiting his brothers George Rickinson Swan, and Frederick William, when he fell overboard from the steamer “Moira”, at The Devil’s Elbow on the Murray River, and drowned. He was buried at Lake Victoria, Victoria. I am still attempting to ascertain his actual burial place.
Charles Edwards Death, Western Herald, Wednesday 12 March 1890
In 1848, Rickinson again declared insolvency in Halifax. The reasons why we will,possibly never know.
Frederick William was born in 1849, in Bradford. He died on April 15, 1850 in Bradford from “Diarrhea 6 Days certified”. Rickinson was in attendance at Bridge St, Bradford, and is an Attorney’s Clerk.
This brings us to the 1851 census, held on March 30, and has been updated to include more information than the 1841. In 1851, they lived at 12 Duckworth Lane, Manningham, Bradford. Rickinson is a Solicitor’s Managing Clerk, having previously been an Articled Clerk (this is noted on the census form). Along with Elizabeth, George (11), Henry Moorsom (10), Catherine (9), and Charles Edward (4) are listed.
Priscilla (named after her aunt) was born on January 4, 1852 at Thornton. She was married twice, to William Wallace Pratt on September 20, 1869 at Liverpool, in Lancashire. They had no children. It is assumed William died around 1872/73, and she them married William Frederick Stafford (1840-) on February 20, 1873 at Kirkdale in Lancashire. They went on to have 8 children, born in Cheshire, Ireland and Scotland. We do not currently have a death date for her, though we assume in Scotland. It is interesting to note that they named their first child – a girl – Clara Priscilla Marie (a family tilt to her Great grandmother, and great grand aunt), which was the same name her sister Catherine had given to her daughter, who only lived for 18-odd months. I wonder if her sister was still alive, and the daughter was named as a tribute to her lost daughter, or as a tribute because her sister had died?
Frederick William (MY GREAT GRANDFATHER) was born on February 28, 1855 in Everton. He was Christened 30 August 1862 at St Nicholas parish, Liverpool, Lancashire. He emigrated to Australia, and arrived in Sydney in 1880. He married Ellen McConnell (1854-1935) in Sydney on February 23, 1866 before moving to Bourke, New South Wales. He was a steamer captain, and they had 3 children – George Rickinson, Elizabeth Barwon (middle name from the Barwon River, which ran near Bourke) and my GRANDFATHER Frederick George (1891-1945) – all born in Boyrke. He died on September 13, 1891 at Newtown (Royal Prince Henry Hospital) from chronic Brights Disease (kidney nephritis) and Ascites (accumulation of liquid in the abdominal cavity), and spent 10 days in hospital. He was buried in Rookwood cemetery (Anglican section) on September 16, 1891. It should be noted that the two brothers wives – Ellen Fanning, and Ellen McConnell brought some Irish blood into the family.
Clara was born on April 4, 1857 in Liscard, Cheshire. She emigrated to Australia with her mother in 1871, and ended up in Goolwa, in South Australia, where her brother George resided, as also was her mother, Elizabeth – more on this further on. They returned to Launceston, had one daughter, Hilda Dulcie Elizabeth (1891-1941), and she died in Launceston on July 7, 1921. The newspapers give her age as 56, though she was, in fact, 64.
Walter was born on May 16, 1859 in Everton, Lancashire. He died on November 6, 1862 in Liverpool, Lancashire from Diptheria. He is buried in Toxteth Park cemetery – possibly with his father.
The 1861 census was held on April 7. They lived in Parkfield Road, Toxteth Park, West Derby, Lancashire. Also present were Elizabeth (37), Catherine (19), Charles (14), Priscilla (9), Frederick William (6), Clara (4), and Walter (1). Rickinson is a Solicitor’s General Clerk; Catherine is a Cigar Maker; Charles, Priscilla, Frederick William are Scholars.
Mary was born on August 16, 1861 in West Derby, Lancashire. She died on February 17, 1863 in Liverpool, Lancashire, from “Dentition Gum Disease Certified”. Henry Moorsom was present at her death. He could possibly have been on shore leave.
Rickinson died on May 12, 1862 at Toxteth Park, Lancashire. His obituary read “On the 12th instant, of disease of the heart at his office, 30 Castle St, aged 41 years, Mr Rickinson Pickhills“. According to his death certificate, his son Charles Edward was present at his death. He was buried at Toxteth Park Cemetery.
Rickinson “Pickles” Pickhills death certificate. He died at his workplace in Castle Street from a heart attack.
There is a possibility that Elizabeth arrived in Australia in 1871, on the “Orient”. There is a record of a KG Pickhills and daughter arriving in Sydney on the 4th January that year. So, time for a “possible scenario”! The newspapers would have printed the passenger list from a hand-written document, so mistakes are inevitable. We know Elizabeth came out here around this time, and with Clara, who would have been 14 at this time, her only surviving child at home, it is more than likely – and with 2 son’s here already – that they emigrated together. There is no independent emigration record for Clara. They would have made their way to Goolwa, where George had a home. We have records – to follow – that definitely place Elizabeth there in 1876. We know that Clara married William Francis Bomford there in 1889 – thus it is possible she met him there, and moved to Launceston after their marriage. The marriage announcement also states that the wedding was held “in the residence of the bride”, so Clara was obviously in Goolwa at that time. At this stage, I am accepting the emigration record on the “Orient” as their arrival here. PS Have just discovered a “Thank You” letter to the Captain of the “Orient”, regarding their appreciation to the ship’s doctor for his kindness and care on what appears to be a rough voyage, and published in December 1870. Two of the signatrees are Clara & Elizabeth Pickhills. My assumption was right.
Adelaide Telegraph, Tuesday 20 December 1870, Page 1.William Feancis Bomford & Clara Pickhills wedding announcement in Goolwa, South Australia
The second actual record we have of her here is in 1876 – and it’s in the form of a police warrant in Goolwa, South Australia. On June 21, 1876, the following notice appeared in the South Australian Police Gazette “A warrant has been issued at Yankalilla for the apprehension of Elizabeth Pickhills, a widow, and mother of Captain Pickills, of the Goolwa, for larceny of 2lbs. of butter from Messrs. Smith & Swan, sheep farmers, Bullapabaringa. Offender is said to be living at Mr. Luffin’s, Goolwa.” . Why she would feel the need to steal 2lb of butter is anybodies guess, and despite knowing that she is to end up with Alzheimer’s, I feel it is a bit early at this stage for that to be affecting her life or mental condition.
The following then appears in the Police Gazette to say that the original charge had been withdrawn.
We then hear nothing of Elizabeth for quite a few years. I dare say that as time went on, her mental condition would have begun to deteriorate at an ever alarming speed Then, on April 28, 1889 at Goolwa, the following incident occured: A writ appears with the Goolwa police dated 2nd May, 1889 against Elizabeth Pickhills . She appeared before a Justice of the Peace, Thomas Goode, charged with that on the 28th April 1889 she did “unlawfully use abusive words in a certain public place, to wit The Parade in North Goolwa, with intent to invoke a breach of the peace”. She had to pay a fine of £2. This incident received a mention in “A Land Abounding – A History of the Port Elliot and Goolwa Region, South Australia” by Rob Linn, chapter 5. Being a Yorkshire lass, I dare say the language would have been very colourful!
The book “A Land Abounding” mentions Elizabeth’s 1989 public indiscretion.
November 1892 finds Elizabeth onboard the “Masilia” emigrating back to England. As with so many aspects of her life, assumptions have to be drawn about the reasons behind her actions. I feel there are two scenario’s that could have prompted her return to England: (A) She just didn’t like it here, being a bit more casual, and not as “modern” as England, with a totally different climate, the tyranny of distance, the remoteness, or (B) her dementia was becoming a problem for her son’s, and they were finding her just too difficult to handle. With Clara in Tasmania, Frederick William and George Rickinson Swan living in Bourke, Goolwa must have become a very lonely place. Anyway, whatever the reason, it was back to England she went, but not to Yorkshire nor Lancashire.
Passenger & Immigration list for the “Masilia”
The Masilia arrived in London on November 22, 1892. We hear no more of her until the 1901 census, held on March 31 that year. Elizabeth is living in St Pancras, in a house with 4 other people, and “living on her own means”. Her age is 74. Then in 1902, she appears in the St Pancras Workhouse records “St Pancras Workhouse at 64 Belmont Street, Admitted 9-4-02, discharged 25-2-03”. This would indicate that she had fallen on hard times.
St Pancras Workhouse at 64 Belmont Street, Admitted 9-4-02, discharged 25-2-03St Pancras WorkhouseSt Pancras Workhouse
There is no more about her until her death in Tooting Bec Mental Asylum in 1906. It is a bit frightening to contemplate what the path to the asylum could have been. Elizabeth died in the asylum on February 20, 1906. Her official place of death was Wandsworth Common. She died from “Senile Decay”, which can mean dementia, or a progressive, abnormally accelerated deterioration of mental faculties and emotional stability in old age, occurring especially in Alzheimer’s disease. There appears to be no record of her burial.
Elizabeth Pickhills death certificate, Tooting Bec Mental Asylum.Tooting Bec Mental Asylum.
Ever since I started gathering information on Elizabeth, many years ago, I have had this feeling of great sadness regarding her life. I get the feeling that life with Rickinson may have been one of erratic employment, not to mention his two instances of insolvency, and being dragged from village to town throughout Yorkshire and Lancashire. She was literally an incubator for children…many of whom had very short lives. Of the 12 children she had over a 22-year period, 5 died in infancy. Two daughters married and moved away, 2 son’s and a daughter moved to Australia and married here, one son died when visiting here, and one son died overseas in the naval service. That is a very sad litany, and after Rickinson’s death, life in Lancashire must have felt vety lonely indeed. Even the move to Australia, to be closer to her sons, didn’t work out well, with several public arrests, and life in Goolwa must have ended up feeling as lonely as England. A return to England, and the humbling by life in a workhouse, and the increasingly detrimental affects of Alzheimers, leading to a sad, lonely death in a mental asylum! It just breaks your heart! Yet despite this, her children here went on to live very productive lives, and she would have been proud of them.
Below is a letter concerning senile decay in London.
My Great Great Grandmother, Elizabeth Pickhills nee Appleyard, and my Great Great Great Grandmother, Clara Pickhills nee Rickinson both have associations with the Northowram area in Yorkshire, so the below description came as quite a surprise to me. The family also has tie-ins to Halifax. My Great Geeat Grandfather, Rickinson Pickhills cannot trace back far with that surname – Hus father, Joseph Pickhills, we only know about through his marriage record to Clara Brown (Clara Rickinson was first married to John Brown). When I hired Mintwood genealogy researchers to do some tracing of the family in 2011, they could find no records for him, and thought there was a probability of him being an itinerant worker. Likewise, there are difficulties tracing Elizabeth Appleyards parentage, despite Appleyard being a common hame in the Northowram area. We only know her father’s was William (through her marriage record to Rickinson), and a possible sibling or uncle – John Appleyard – present at the Northowram death of Jane Pickhills, the daugter of Rickinson & Elizabeth. Research is ongoing, but it is possible that both families are from that area.
Pickhills is a very old name coming from the medieval period where it was written as ‘Pighills’. I have seen the name on entries in relation to early research in the Shibden valley area. Northowram old Township was a very large area covering the village and skirting the edge of Halifax right up to the other side of Queensbury (Queenshead as it was in earlier times).
This interesting name is of early medieval English origin, and is from a topographical surname for someone who lived by a small field or paddock. The name derives from the Middle English word “pightel, pighel”, small enclosure, field, or paddock. Topographical names were among the earliest group of surnames to be created in England and other countries in Europe, as they became necessary, since both natural and man-made features in the landscape provided instant and easily recognisable identifying names for the inhabitants of the small communities of the Middle Ages.
The modern surname can be found as Pickles, Pickless, Pickle and Pighills, and is found recorded mainly in Yorkshire. The marriage of Thomas Pickles and Sarah Tennard was recorded in Bingley, Yorkshire, on January 28th 1649. One R. Pickles, a famine emigrant, sailed from Liverpool aboard the “New World” bound for New York on June 7th 1847. The first recorded spelling of the family name is shown to be that of Richard de Righkeleys, which was dated 1379, in the “Poll Tax Returns of Yorkshire”, during the reign of King Richard 11, known as “Richard of Bordeaux”, 1377 – 1399. Surnames became necessary when governments introduced personal taxation. In England this was known as Poll Tax. Throughout the centuries, surnames in every country have continued to “develop” often leading to astonishing variants of the original spelling.
Northowram Primary SchoolOld Northowram village before the developers moved inNorthowram Village
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