The long return home
by Beau Newham
In the final weeks of February, my housemates and I were stocking supplies in our house for what we assumed would be a shaky few months in Denpasar
Bali has been here before – not in the form of a sudden pandemic, but over the last few decades there have been moments like this; the 2002 bombings, the 2017 Mt Agung eruptions. Events that cause the sudden cessation of the seemingly endless flows of tourists coming in and out of the island.
This meant that when the pandemic came, we were there in good company. Advice came quickly from the local neighbourhood. Suddenly our house was filling up with boxes of Indomie (Migoreng), cans of food and gallon drums of water - the things one needs to avoid contact with the outside world.
We sat around those nights making our tentative plans to wait patiently but comfortably for the threat of the pandemic to pass. It was just as the preparations were coming to an end, that I received the news that the Australian Government had made the call to withdraw all non-essential personnel from Indonesia. That was me.
In one email I lost my job, my new home and was leaving my colleagues and friends to face the pandemic alone.
What started as two weeks to prepare and leave the country, was shortened again and again. The emails from the government were growing increasingly insistent; I had to return to Australia as soon as possible. I remember sitting on my rooftop, staring out at the sunset over Denpasar wondering if staying was an option. Seeing out the inevitable prolonged unemployment in Indonesia felt like a much more financially palatable option than the expenses of living in Australia. Here my rent was paid until the end of the year and food and utilities were cheap. There I was facing building a life from scratch. Should I stay or should I go?
The answer came in the form of an abrupt reminder of both my privilege and vulnerability. To stay was to put my HIV medication supply at risk. My medication was from Australia and I could only get it in person. The thought of medication was never far from my mind because at the time it was well known that Indonesia was running out of it. Across the country stockout issues had been ongoing for months. By March, Bali’s stocks were on the verge of running out. This was the first time that I was confronted with my reliance on HIV medication. I need it to stay healthy, and the pandemic meant that if I stayed in Indonesia there was a risk I would run out. Looking at how long the global travel shut down has gone on, I would have run out. In hindsight, I made the right choice, but at the time it felt like abandonment.
In the days before my flight, HIV medication stock in Bali was so low that my friends were only able to collect their medication seven tablets at a time. There were now real concerns that the stock would run out completely and people would have to be moved to second and third-line treatments. Over those last few days in Indonesia, my modest stockpile of medication was burning a hole in my pocket and my conscience. When saying my goodbyes to a positive friend, he confessed was anxious about his coming fate. In response, I impotently offered to give his doctor my supply – a different regime but a safety net if the worst should happen. It was nothing. A drop in the ocean for a country with a conservatively estimated 640,000 people living with HIV. 640,000 people all facing down the effects of two pandemics, both very much real and ongoing.
At the end of March, I returned home to the kindness and support of friends and family, but sadly instead of the reunion we all craved, I was thrust into Melbourne’s long lockdown. My return home no longer felt like a homecoming, but instead felt like I had somehow got stuck at the airport. I was neither here nor there but instead inside what felt like some ZOOM meeting waiting room. This feeling of suspension lifted alongside the lockdown eight months later. Finally, I could begin to feel like I was coming home. The transition has been rough and difficult, but I am thankful that I have access to so many of the support services available to us in Australia. I looked at the success of our sacrifices with joy, even as I watched the numbers in Indonesia climb and climb. With loved ones on both sides of this horrible divide of contained and unconstrained COVID-19 spread, where do we put our feelings or efforts?
The threat inherent in a global pandemic, and the vulnerability of our lives in the aftermath, can leave us with the desire to close ourselves off from the other parts of the world. Proud of our sacrifice, our success, and our strength to rebuild. But I hope that a lot of us who have lived-experience with HIV know first-hand the ways in which pandemics hit hardest on the people and places least prepared, and the least supported. We know that the way out of a pandemic is not to retreat into ourselves, but to connect - to lean on the communities that support us and to come together to build new ones. COVID-19 showed us exactly how connected the world now is. Can our idea of communities grow to encompass the size of the world we truly are connected to now? As Australia stares down the end of two pandemics, HIV and COVID-19, how do we ensure that we bring the rest of the world with us – especially those who are caught in the middle of both?
The new (COVID) normal?
by Chris Cheers
2020 has been a challenging year for all. The challenges we have faced may have looked different for each of us; however, there was a sense of connection in that we were all going through this together.
While COVID-19 brought many pressures, we also observed a collective sense that this was an unprecedented time. Suddenly, it was OK to not be coping and to need support.
For some of my clients, it has been useful to give meaning to the year as a time of loss. And we know that we experience loss through stages of grief, as outlined by Elisabeth Kübler-Ross in her 1969 book, ‘On Death and Dying’
Perhaps you felt a period of denial in the early stages, blocking out the seriousness of the risk, or believing we would return to normal after a few weeks of lockdown. However, once the reality set in, perhaps anger began to appear, aimed at anything from inanimate objects, strangers, or closer to home with friends and family.
Bargaining may have occurred as you attempt to regain control of the situation, exhausting yourself through attempts to pivot, adapt or make constructive use of periods of lockdown (learn to bake, or speak Italian anyone?). As the months continued, many of us also entered the stage of depression, characterised by lethargy and a sense of hopelessness that this would never change.
These are all normal parts of a grieving process. However, it is also important to acknowledge that there is no right way to grieve; just like there is no right way to deal with 2020. Contrary to popular belief, we do not move through these stages in any specific order, nor do these stages look the same for everyone. However, the hope is that in all grief, we do reach a stage of peaceful acceptance. But for many, finding acceptance in 2020 has been nearly impossible.
Why is that? Well firstly, our “COVID lockdown” grief in 2020 is related to an indefinite loss. It is hard to accept the losses of 2020 when it is not clear what parts of your life, pre-COVID, will return to normal. Further, the losses have been felt in many different ways. Perhaps there has been a loss of connection with friends and family, a loss of a job, a loss of your home or for too many, loss of a loved one.
There has also been a loss of freedom, or even a loss of self as you were no longer allowed to do the things that define you.
Further, you may have recently experienced a new pressure in your community to have reached acceptance before you are ready. As lockdowns have ended and restrictions have eased, you may have felt a pressure from those around you to just move on and get back to life. Whether from government pressure to get out there and “save the economy,” your boss asking you to come back to work, to family members planning Christmas and friends inviting you over to catch up.
Although this year has obviously presented challenges from mental health and wellbeing, it is important to not talk about challenges as if they are past tense, but more so how they have changed. Additionally, many people may be experiencing mental health issues greater now than when the pandemic was at its peak.
Mental health challenges are not caused by COVID-19; they are caused by the impact COVID-19 has had on our lives. And these impacts will continue far into the future. Yet the collective sense of togetherness that was perhaps felt at the height of the pandemic, seems to be eroding. As states ease restrictions differently, some people return to work whilst others remain unemployed, and masks begin to be a personal choice rather than a mandated requirement, we are now more divided in our responses to this threat.
And through this division we may feel more isolated and alone in our emotional responses; we begin to believe that there is something wrong with us, and everyone else is just back to normal life. COVID-19 may become eliminated, but perhaps now is the time to move our attention away from the count of the number of COVID cases, to a recognition of the challenges many of us continue to face.
Many of us, over an extended period of time, have been forced to isolate, avoid social situations and learnt there is threat in social environments. It is important to acknowledge that this is exactly how social anxiety develops. This is why it makes sense that this period may have induced a new or different level of social anxiety for you.
The next few months might be the most challenging as we return to environments that may now bring on anxiety.
Remember: this anxiety is a normal reaction to an abnormal situation.
That’s why you are feeling it. So the best thing to do is to keep talking about it to trusted friends and family. Try to be kind to everyone as they re-engage in social environments at whatever pace works for them. Including you.
So, if you are feeling apprehensive about returning to another weekend of social engagements, hanging with close friends, especially over the Christmas period, here are some tips to deal with this “hangxiety.’
As your brain readjusts to more complex social environments, socialising is going to be more exhausting. This might help explain why you are feeling so exhausted after last weekend: you were pushing beyond your current social capacity, which may not be what it used to. So when planning weekend activities try to limit the number of social events, especially those with large groups of people.
Try to notice if you are saying yes to events because of a fear of missing out, rather than only saying yes to what you are ready for.
Remember bubble baths are lovely, but self-care also means setting boundaries, saying no, and asking for what you need.
Real friends tell friends that they just can’t go to one more picnic this weekend. And real friends understand there’s always next weekend.
With this in mind, know that whatever your grief looks like in response to changes in 2020, or whatever you feel in reaction to the return to social environments, know that these reactions are valid. Know that you are not alone. They are a normal reaction to an abnormal situation. “COVID-normal” is not something you have to work to achieve, it is whatever you are feeling right now.
The ideas presented here are general wellbeing advice. If you want further support call:
Beyond Blue Coronavirus Mental Health Support 1800 512 348
Lifeline. Crisis Support. 13 11 14
Rainbow Door. LGBTIQA+ support. 1800 729 367.
Let's get physio-cal
by Mark Binette
When I tell people that I'm a physiotherapist working in HIV, the first question I always get is - what does physio have to do with HIV?
It is a common misconception that physios primarily work as sports therapists or in rehabilitation settings. However, physios are a broadly skilled group of therapists working in a diverse range of areas. This can include ICU, surgery, sports, cancer, respiratory, aged care and neurology to name a few. Physiotherapists working in HIV utilise skills from all of these areas to provide treatment for people living with HIV (PLHIV) across the spectrum of health care – from illnesses requiring hospitalisation to community programs. At the Alfred Hospital, we run exercise groups like Pilates, hydrotherapy, gym-based classes and “tums & bums” (which is a little bit disco).
As HIV management has improved over time, positive people are living longer and are healthier than ever before. In fact, around half of the PLHIV in Australia are now aged over 50. We know from population studies that before COVID-19, less than half of the population met target recommendations for physical activity. COVID-19 has made 2020 especially challenging in this regard; the combination of multiple lockdowns, social isolation, and disruptions to usual health services have all played a part in reducing many people’s participation in their usual exercise-related activities. While it is common knowledge that exercise is important for our health, it is important to recognise that the benefits aren’t just physical. Exercise has positive impacts upon mental health, functions as a social outlet, and helps to facilitate connections with community.
As we age, the impacts of low levels of physical activity become more apparent as loss of strength may result in loss of independence, ability to perform the taken-for-granted activities of daily living, and overall quality of life. While evidence does not suggest that HIV causes premature ageing, some aspects of frailty normally seen in elderly populations are seen in PLHIV at a younger age. In addition, cognitive impairments associated with HIV appear on a broad spectrum and increase as people age. These range from subtle symptoms like memory problems to more severe symptoms such as dementia. Exercise has been shown to be a safe and effective therapy at improving physical function, but emerging evidence suggests that it may also have a role in preserving or improving cognition.
Exercise is something everyone can do in some way. Incorporating exercise into your daily routine doesn’t have to be complicated – it could be going for a walk, gardening, or exercising in sitting. Getting assessed by a health professional like a physiotherapist is a great way to get set up with an individualised program based on your needs, but attending your local gym, community health exercise groups or sports are also great ways of staying active. While there are no exercise guidelines specific to PLHIV, Australian Guidelines for physical activity in adults (18-64yrs) recommend a total of 150 to 300 minutes of moderate intensity exercise, or 75 to 150 minutes of vigorous exercise per week as well as muscle strength exercises twice per week. A good way to start and stay motivated to exercise is to set a target, such as a walk, five times a week, then gradually build up to it. Remember - five minutes is better than nothing and it all adds up!
As the Australian pandemic response settles and we all take a breath, we find ourselves reimagining what our health service will look like beyond this. Our hydrotherapy classes are still suspended, our Pilates class is in the process of moving online and our initial assessments for new clients are via telephone or video chat. Innovative use of technologies such as telehealth and online classes are here to stay and will continue to provide therapy for people in their homes. While these tools are fantastic adjuncts to our usual care, they should be used to expand service delivery and accessibility rather than replace what we used to do.
If you need any help getting started with exercise for the first time or would like to know more about what services are available in your area, feel free to contact me at M.Binette@alfred.org.au.