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A renewal of life
At age 50, Stephen Berry collapsed with an AIDS-defining brain condition. Now approaching 60, he has recovered enough, against massive odds, to go rafting, scuba-diving and bungy jumping.
Fifty was not a good year for me. After 20 years with HIV using only natural therapies, I experienced a major immune collapse. The virus had finally got the upper hand. The same week that I graduated with an Advanced Diploma of Applied Aboriginal Studies from Tranby Aboriginal College, a brain MRI confirmed the worst. PML (progressive multifocal leuko-encephalopathy) was a major AIDS condition short-circuiting the myelin nerve sheath of my cerebellum. The odds of death were 50/50 within six months to two years. Viral load shot up to over 80,000 and T-cells disappeared – only 85 were left, along with very few platelets and thus bruises all over my body.
I should have started HIV medications at least a year sooner. PML had delaminated the nerve sheath of my brain and the damage would spread. Within three months I had lost bladder control, balance, the ability to write and drive. The loss of speech started to challenge my use of the phone. Soon I became too weak to get up off the floor if I fell and had to head for the bathroom every two hours throughout the night to have a pee.
Massive intake of HIV medications became the order of the day and night. Everyone was worried big time. My partner of seven years, my family, my colleagues, my doctor and neurologist were equally concerned. The medications shot the HIV viral load to ‘undetectable’ within just six weeks. My neurologist advised me he would stop me dying but that recovery of lost faculties from PML was extremely rare.
I was exposed to HIV on a trip to San Francisco in October 1983, only 18 months after coming out in my late twenties. Diagnosis as positive was in June 1985 and my then-boyfriend would be dead within three years. So having watched friends and ex-partners pass away over the past two decades, my best prospect now was life as a disabled pensioner – if I survived.
I was getting around on a walking frame and could not even sign my name. My brain was partly dead, but my psyche had not registered the death threat, even after seeing so many others depart. Four years prior to all this, my partner had done a year of chemo to deal with a KS diagnosis. After that experience, friends had questioned my wisdom in continuing to avoid HIV drugs. Now I felt dumb, dumb! Self-doubt and anger opened the floodgates of regret - 'you will now pay'. Every sense was numbed at the enormity of my situation.
Yes, I had done much in my 50 years. Yes, I had a wonderful partner, family and friends as extraordinary support. But things worsened. After the first couple of weeks on the strong medications, I was feeling so much sicker and weaker. A change of medications to include the original AZT got rid of the nausea but took me back to my teen-age, with zits all over my face, forehead and shoulders. Weeks later came an outbreak of shingles around the left eye socket – the high risk now was weeks of blinding pain and the loss of vision in that eye.
We pulled apart my bathroom, removed the slippery bath, installed a large shower big enough for a chair, and added grab handles around the apartment to give me a greater chance of stemming falls at home. The loss of vision did not ensue, but we had to check it every three months. I continued natural therapies like acupuncture, shiatsu and reiki. NorthAids at Milson’s Point [which has since closed down] provided an expanded range of therapies, including Pilates and tai chi. I had a two-week respite down at their Dee Why Lodge to give my partner a much needed break.
Turning the tide
At 51, the immune tide began to turn in my favour. My neurologist gave me a restricted permit – up to 10 kilometres – to drive again. On one of these excursions to NorthAids in my little Citroen 2CV, a new friend came into my life. Parking outside a Milson’s Point café was the catalyst for an introduction to a car enthusiast having brunch there. We started as fellow enthusiasts, but Robert's interest soon swung to my physical constraints and the story of my journey from HIV to AIDS and PML. I had no balance, trouble stabilising a cup of cappuccino, writing was totally impossible, I could not run. But Robert thought he might be able to help with a super-probiotic yoghurt he had spent years developing. Maximising my body’s potential for healing resonated with me. Robert supplied the yoghurt without cost for over a year. Developed from a human culture, it came in dried sachet form and had to be mixed with UHT full-cream milk and incubated for 14 hours.
Within days my sloppy, smelly poos became odourless, perfectly formed, floating in the toilet bowl! Within a week of Progurt I no longer needed the homoeopathic drops necessary to rehydrate my skin, parched by both HIV and the medications. Mornings heralded a new era of healing. For over a year erections had been relegated to a bygone era. Miraculously, I awoke one morning with a strange reminder of a more youthful past! Brilliant, stunning. Now I knew I was not going to die. Now I was sure healing would be my journey.
After five years of this turbo-charging my digestive system, blood tests have shown something curious. Virtually all my organ functions, including the liver, are within normal range, which is amazing considering the number of HIV meds I've taken to quell the virus to undetectable. I’m convinced that optimising the digestive system has helped me to a renewed quality of life.
Not dead yet!
Reflections of what life might now become set my mind probing what it meant to be 'Stephen'. From very scared and very lost, new stages of excitement enlivened the disturbed grey matter. Acronyms emerged expressing the new possibilities. PML became Potential Miracle Land, HIV became Healing Inner Values and AIDS became Assists Individuals to Develop Spiritually!
A good friend offered the air fares for a trip to the South Island of New Zealand for my partner and me to celebrate: A Not Dead Yet Recovery Tour! One year after the PML diagnosis, we were overnighting on Doubtful Sound, visiting dolphins, seals and penguin colonies after a week of brilliant blue skies, mountains, lakes, glaciers, caves and snow. On our return another colleague bought me a laptop so I could learn to type again to partly replace my lost ability to write.
It should have been a great Christmas. But, having nursed me back from very poor prospects, my partner announced he was leaving me for someone else.
Someone he had loved before we met was now single. Anger replaced the sense of hope. For six weeks after he left I was very shitty. Then a new perspective dawned: I loved him, I did not hate him.
I invited him to lunch in the park near where he worked. Fish and chips shared beside the flowerbeds celebrating new growth. A shared smile invited me to open my heart. “I love you so much, I just want to see you happy. It is not about you making me happy. It is about you finding your own happiness.”
For a couple of years we hardly saw each other. The lost faculties accelerated in their return. The hard-ons became a joystick for my sole attention. I returned to part-time property work. And another return happened. We started to date again. Soon it became like two schoolkids with a first love blossoming. Everything was magical, romantic. The love grew and grew.
Age 56 saw a myriad of celebrations for my birthday week in Cairns, where I met up with a HIV+ doctor friend from the US. A bucket list ensued. Together we set off white-water rafting on the Tully, hot air ballooning over Atherton Tableland, microlight flying over the Inner Reef, scuba-diving and snorkelling, strolling in the rainforest, swimming under a waterfall, plus forward and reverse bungy jumping. A few months later this was capped off with the Australian Property Institute Award of Excellence in Valuation for the PML Ghost that Walks!
My doctor calls my recovery a miracle. My neurologist calls it amazing. A visiting London neurologist wanted to see the one who had defied medical expectations with PML.
At 58, I feel deeply blessed. There is a huge shared love with my partner. All around I have been hugely lucky. The return of love, the return of health and the return of healing after nearly 28 years with HIV and eight years since PML. Maybe I will even learn to run again by the age of 60? Stephen Berry