When you spend a lot of time on your own, as I do, you tend to notice things more, perhaps earlier.
I think it was maybe early February when I started to feel quite concerned about a new virus from the same family as common colds but worse than influenza. I watched a documentary in February on the “Spanish Flu” and I learnt that we don’t know for sure where it originated. The reason it was coined Spanish Flu is because Spain was neutral in WWI and so they weren’t trying to hide the truth of their experience with this particularly virulent virus from other countries who might have used that information against them if Spain, too, had been at war.
Spain reported honestly, through its own media, the Spanish experience with what would become a devastating pandemic, the likes of which the modern world had not seen. A false impression emerged that Spain was hit very much harder than other countries and was the epicentre of the virus. Neither of these things turned out to be true.
Now we have old and new media vying for our attention from around the world, as well as conservative and liberal outlets that are pumping out new information 24/7. We have think pieces attempting to find new angles and fresh takes, the quality of which varies dramatically.
We are certainly not suffering from a lack of information this time. Media literacy has become one of the most important skills a person can possess right now, with the ability to acquire flour and make sourdough running a close second, it would seem. Vulnerable people, though, are particularly at risk from bad information or misinformation, and disabled people are often made more vulnerable because of a lack of equitable access to important and timely information.
The amount of misleading and downright wrong information being spread throughout the world is disturbing and worrying. With some of this bad information being disseminated by old media, from radio and TV, to print journalism, media we are supposed to be able to trust especially in times of crisis, even the most media savvy of us can find it difficult to be properly discerning about what information and messages we take on.
I’ve been through a lot in my life but I’ve never been so terrified.
I’ve struggled with an anxiety disorder all of my adult life. It probably began in my teenage years. I was always an anxious child but that anxiety began to spiral out of control in my teens and twenties and I realised that it was tied to medical trauma I’ve experienced throughout my life. This trauma is profound and it informs much of how I live my life. When I decided to write a PhD on disability history in New Zealand, one of the first things I had to do was figure out how I would research disability without it doing psychological harm.
I decided not to directly focus on the medical experiences of people with disabilities in my research. Until now, I had only theorised the damage focusing on a medical past through a disability lens might do to my own fragile psyche.
Now I know exactly what re-traumatising can do to a person. The panic attacks began well before we went into lockdown. In the week before lockdown as I visited my doctor for any medicines I might need while in isolation, panic attacks turned into panic all of the time and intolerable flashbacks.
I didn’t have the means or the freezer space to stockpile groceries and other essentials as others were. We were told to shop normally. I was trying and failing due to many essential items already becoming scarce as those who could afford to hoarded away everything from toilet paper, soap, hand sanitiser, and hygiene wipes to bread, flour, tinned foods and eggs for themselves. I always thought I was reasonably well prepared for disasters and emergency situations. It turns out the few extra tins of food I’d set aside were basically pointless in the absence of more comprehensive planning.
It never occurred to me that in my lifetime reliable access to food and essential items would be something I might become anxious about. Until Countdown supermarket implemented a new scheme that would prioritise delivery for elderly, disabled and vulnerable people, I spent many of my already impossibly difficult waking hours trying to secure a strategy for reliable grocery delivery. I explored every avenue I could think of but until Countdown supermarket delivery became more of a reliable option, I was faced with having to enlist the help of people outside of my “bubble of one”. I’m lucky it didn’t come to that. I’m lucky it was even an option for me to get help from others should I need it. It didn’t feel very lucky at the time.
Retaining the independence we have is so important for disabled people and for others who might be considered vulnerable. It’s important we maintain some control of our lives. It’s imperative the systems we have in place in situations like this don’t become suddenly precarious if the people we rely on become unavailable for whatever reason, say a virus, for example. The anxiety around food security alone has been enough to raise my heart rate to uncomfortable levels.
It’s very difficult to plan for a hypothetical situation when you don’t know what you’re going to need. I’ve learnt more in the past few weeks about emergency preparedness than I probably would have learnt in a lifetime without Covid-19.
There, I said it. Covid-19.
2019 was a rubbish year for me. It started with a hospital stay in January, a routine checkup with specialists at Burwood Hospital to see if there were any adjustments or recommendations that might be made to improve my quality of life. That set off PTSD symptoms which I hadn’t had so severely since I needed specialist psychological counselling to get me through my leg amputation in 2014. Sepsis in March rounded out the first quarter of what would prove to be a pretty awful year for me and I ended up severely depressed and unwell. I’ve joked darkly that of course this pandemic virus would be called Covid-19. That year just seems to haunt me.
In the days and weeks since lockdown, I’ve been doing it tough. I had been paying close attention from the beginning to the fact that this thing, this virus, it attacks vulnerable people particularly hard. It kills vulnerable people. Stories began to flow out of countries with alarming speed and abundance about how places without enough resources, especially ICU beds and respirators, were prioritising otherwise healthy people for treatment. People with co-morbidities or other vulnerabilities, such as certain conditions and disabilities, would be sacrificed so that those people who had a better chance of recovery would get access to treatment.
Rest homes throughout the world recorded outbreaks that under-resourced staff were struggling to contain and manage, with disturbingly high levels of fatalities. Those of us who are vulnerable to this thing, this Covid-19, couldn’t help but feel we would struggle to survive if our country fell to the same fate as others where lifesaving healthcare and medicines might have to be brutally rationed.
I opened my back door this morning to a praying mantis, quite dead, dangling from a single silken thread of a spider. Life and death can be cruel. The brutality of our decisions can have devastating consequences for others and even ourselves.
While people in power wait for advice from further and further up the bureaucratic chain of command on the true benefits of preventative measures like masks and other PPE (personal protection equipment), those of us who need help from others in our own homes are dealing with the consequences of PPE gear not being made available to care workers so that none of us are able to feel truly safe in our own homes right now.
As a “bubble of one”, I had to make a decision early on whether I would cross my fingers and hope for the best or try to mitigate risk as best I could. I have chosen to cut the help I get right back. Even still, the once a week that my carer now comes to me is a time that fills me with panic. I can’t help but feel a disconnect between a strategy that is at once trying to protect our nation’s most vulnerable people from Covid-19 while at the same time is moving so slowly to provide what anyone might call conservative measures of protection.
I knew what was coming. With any luck we were getting ahead of this thing, this Covid-19, so that our health system would cope just fine and lives like mine wouldn’t have to be sacrificed. We would need to be vigilant and stay the course. We would need to prioritise science right now. I knew what was coming …
Death by thinkpiece. As I expected, people with demographics on their side have started to wonder if we perhaps have been overreacting. If perhaps we should open our country back up and get back to normal because the sacrifice isn’t worth it. Vulnerable people could stay at home and everyone else could get back to work. Mainly it would be vulnerable people who would die and they were going to die anyway.
It’s true, vulnerable people will die anyway. We all will, eventually.
I’m vulnerable. I’m not dying right now, though. I have no idea how long I have but I’m hoping it’s a while. Despite my poor anxious and traumatised brain telling me I want to die every day for weeks when all of this became too real and the anxiety was too much to bear, I want to live.
Not all of the vulnerable people who have died, are dying, will die of this thing, this Covid-19, would have died in the coming months or years anyway. Many of us are vulnerable but very much full of life. I want New Zealand and the world to fight for me and people like me.
Call me selfish but I’m not ready to die yet and it terrifies me the ease with which people are prepared to sacrifice my life and the lives of people like me, vulnerable people, for the sake of an economy that is going to struggle whatever we do.
Even in my darkest hours, I do not want to die of Covid-19.