"An open letter to anyone I’ve ever called a friend"
Jul 12, 2024 14:00:45 GMT
Nadica (She/Her) likes this
Post by Wubs (she/her) on Jul 12, 2024 14:00:45 GMT
By Kai Ellery, May 6th 2023 -- medium.com/@kaiellery/an-open-letter-to-anyone-ive-ever-called-a-friend-beaf198a3a31
Hi everyone, it’s been a while.
You may not have seen or heard much from me over the last few years. Partly, this is because selfies in my pajamas working from home don’t make very glamorous Instagram posts. Partly, this is because in March of 2020, my life got turned on its head. No, not by the pandemic, although that certainly did its part — by a life changing medical diagnosis that made me, just as the pandemic began, knowingly part of the group of immunocompromised people most likely to get severely sick or die from COVID-19. In March 2020, I was in hospital, hooked up to IV antibiotics and blissfully unaware that I was teetering on the brink of sepsis (febrile neutropenia, for anyone curious or medically minded).
I was chronically ill before the pandemic, but more than any previous diagnosis, being diagnosed with cyclical neutropenia — while it explained plenty about my lifelong health issues — threw my life into a tailspin for a good few months. Bruises from blood tests, injections that set my bones on fire, out-clinic appointments at the local cancer centre, the spectre of my own mortality looming above me larger than ever before in my life.
As you can imagine, finding out I am in the second highest risk group in an emerging global health crisis just as that health crisis took hold has been… stressful, to say the least. But I’ll be honest, at the start of the pandemic I was heartened by the near universal compassion and care I saw displayed by the people around me. From the hospital workers who stabilised me and sent me home ASAP to reduce my risk of exposure, to the family and friends who took steps to keep themselves safe and mitigate ongoing transmission. I genuinely believed that we were collectively capable of affecting real change if we could sustain that momentum — hell, we wiped out an entire strain of the flu!
Fast forward three years, and my experience of the pandemic is vastly different now. Not in the sense that I am at lower risk (despite vaccination, one in four people on my treatment develops severe COVID, and similar statistics prevail for other groups such as cancer patients and transplant recipients). Instead, today feels different because despite the facts of the situation remaining essentially the same, the behaviour of others puts my health at a high level of risk, at the same time as the strategies I use to protect myself and my household are subjected to endless scrutiny and scorn.
Over the previous six months, my partner and I have been laughed at, leered at, street harassed from passing cars, coughed pointedly toward, and had people cough and sneeze openly in our faces. I’ve had people who had no issue understanding me a year ago insist that they cannot hear me through my respirator now (no, not people who are hearing impaired). I’ve had friends wax poetic about how difficult it is for them to wear a mask infrequently in high risk settings (healthcare, public transport), meanwhile I rely on safely accessing those settings to receive basic health care, manage my illnesses, and avoid life-threatening complications.
In short, while I wish — as hard as one can wish — that I could decide to forego my respirator, forget indoor air quality, and go back to living my life like I did in 2019, I cannot. It would be counter to my experience of reality. It would be counter to my values as a person, and what I know is right. I’m writing this to ask you to consider the realities of people like me, and to really, deeply consider whether going back to living life like “normal" is in line with your values, or your reality, either.
Today, WHO officially declared the pandemic emergency over. Which is kinda weird, considering last week they declared that one in ten COVID infections is resulting in long COVID, and will necessitate huge numbers of long term carers. Not one in ten people. One in ten infections. To me, that sounds more like the start of a crisis than the end of one. But who am I to think critically when the powers that be demand we get back to working and spending (for our own good - they promise!)? That we learn to ignore the carnage in our wake in order to line their pockets and pay our ever-increasing rent?
Who am I to suggest that perhaps case numbers are down because we decimated access to testing, and told everyone not to bother because it’s ‘just the flu' anyway? That perhaps hospitalisations, excess deaths, and people out of work due to temporary (or long-term) illness tell a different story? That maybe we should look to the social systems like healthcare and education that are collapsing in real time to get a real sense of the impact? That we could take a wider view at the number of people locked out of society, and realise that the people we see most often in social settings, who believe it is all over, are perhaps not the most representative sample?
If we respond like this to the climate emergency - with half as much hubris, individualism, urgency of normal, and flat out denial - we are all going to die. And it’s really strange to see people working so hard to create systems change around other existential issues gobble up the right-wing propaganda about COVID as if it doesn’t directly contradict their values and belief systems in every single way. Two years ago, "The old and the weak will just have to be weeded out of society, and the strong will carry on" was a much-reviled eugenicist talking point. Now, even to those who would call themselves social justice people, it’s just an unfortunate but inevitable fact.
We need social infrastructure. We need cleaner air. We need to reduce emissions. We need fairer political and economic systems. There is so much to do, and so little time. Can we really afford to waste any of it grinding our axes against denial, hopelessness, nihilism, or endless refrains of personal responsibility?
There is no systems change without individual people, us, demanding it. There is no systems change without people collectively pushing back against injustice, and making politically convenient but morally reprehensible stances unacceptable - making sure that they are politically inconvenient in the end. There is no collective action without solidarity. So will you stand in solidarity with older and disabled people, many of whom are at no less risk of death and disability than they were a year or two ago? Or will you accept unrelenting suffering and loss at a global scale, so long as (you assume) it will no longer personally affect you?
And furthermore, why do you believe that it won’t personally affect you? Do you believe you are entitled to your good health? Do you feel confident that since you do all the right things, your body will respond in-kind by never becoming sick, or frail, or injured? Do you believe there is something chronically ill people are doing wrong, to not effectively ward off their illnesses? (Hint: I have some of the healthiest habits of anyone I know my age, and that didn’t spare me one bit.) Do you believe that you, and you alone, will never grow old?
These are questions I encourage you to ask yourself, now more than ever. We — all of us — do not have time for collective denial. We need to take action, to prevent harm where we can, and to fight for broader systemic change where we as individuals cannot. We need you to act like we are all one day, one illness, one accident away from a disability. And should we be so lucky, ten years, twenty years, fifty years away from a ripe old age.
You may not have seen or heard much from me over the last few years. Partly, this is because selfies in my pajamas working from home don’t make very glamorous Instagram posts. Partly, this is because in March of 2020, my life got turned on its head. No, not by the pandemic, although that certainly did its part — by a life changing medical diagnosis that made me, just as the pandemic began, knowingly part of the group of immunocompromised people most likely to get severely sick or die from COVID-19. In March 2020, I was in hospital, hooked up to IV antibiotics and blissfully unaware that I was teetering on the brink of sepsis (febrile neutropenia, for anyone curious or medically minded).
I was chronically ill before the pandemic, but more than any previous diagnosis, being diagnosed with cyclical neutropenia — while it explained plenty about my lifelong health issues — threw my life into a tailspin for a good few months. Bruises from blood tests, injections that set my bones on fire, out-clinic appointments at the local cancer centre, the spectre of my own mortality looming above me larger than ever before in my life.
As you can imagine, finding out I am in the second highest risk group in an emerging global health crisis just as that health crisis took hold has been… stressful, to say the least. But I’ll be honest, at the start of the pandemic I was heartened by the near universal compassion and care I saw displayed by the people around me. From the hospital workers who stabilised me and sent me home ASAP to reduce my risk of exposure, to the family and friends who took steps to keep themselves safe and mitigate ongoing transmission. I genuinely believed that we were collectively capable of affecting real change if we could sustain that momentum — hell, we wiped out an entire strain of the flu!
Fast forward three years, and my experience of the pandemic is vastly different now. Not in the sense that I am at lower risk (despite vaccination, one in four people on my treatment develops severe COVID, and similar statistics prevail for other groups such as cancer patients and transplant recipients). Instead, today feels different because despite the facts of the situation remaining essentially the same, the behaviour of others puts my health at a high level of risk, at the same time as the strategies I use to protect myself and my household are subjected to endless scrutiny and scorn.
Over the previous six months, my partner and I have been laughed at, leered at, street harassed from passing cars, coughed pointedly toward, and had people cough and sneeze openly in our faces. I’ve had people who had no issue understanding me a year ago insist that they cannot hear me through my respirator now (no, not people who are hearing impaired). I’ve had friends wax poetic about how difficult it is for them to wear a mask infrequently in high risk settings (healthcare, public transport), meanwhile I rely on safely accessing those settings to receive basic health care, manage my illnesses, and avoid life-threatening complications.
In short, while I wish — as hard as one can wish — that I could decide to forego my respirator, forget indoor air quality, and go back to living my life like I did in 2019, I cannot. It would be counter to my experience of reality. It would be counter to my values as a person, and what I know is right. I’m writing this to ask you to consider the realities of people like me, and to really, deeply consider whether going back to living life like “normal" is in line with your values, or your reality, either.
Today, WHO officially declared the pandemic emergency over. Which is kinda weird, considering last week they declared that one in ten COVID infections is resulting in long COVID, and will necessitate huge numbers of long term carers. Not one in ten people. One in ten infections. To me, that sounds more like the start of a crisis than the end of one. But who am I to think critically when the powers that be demand we get back to working and spending (for our own good - they promise!)? That we learn to ignore the carnage in our wake in order to line their pockets and pay our ever-increasing rent?
Who am I to suggest that perhaps case numbers are down because we decimated access to testing, and told everyone not to bother because it’s ‘just the flu' anyway? That perhaps hospitalisations, excess deaths, and people out of work due to temporary (or long-term) illness tell a different story? That maybe we should look to the social systems like healthcare and education that are collapsing in real time to get a real sense of the impact? That we could take a wider view at the number of people locked out of society, and realise that the people we see most often in social settings, who believe it is all over, are perhaps not the most representative sample?
If we respond like this to the climate emergency - with half as much hubris, individualism, urgency of normal, and flat out denial - we are all going to die. And it’s really strange to see people working so hard to create systems change around other existential issues gobble up the right-wing propaganda about COVID as if it doesn’t directly contradict their values and belief systems in every single way. Two years ago, "The old and the weak will just have to be weeded out of society, and the strong will carry on" was a much-reviled eugenicist talking point. Now, even to those who would call themselves social justice people, it’s just an unfortunate but inevitable fact.
We need social infrastructure. We need cleaner air. We need to reduce emissions. We need fairer political and economic systems. There is so much to do, and so little time. Can we really afford to waste any of it grinding our axes against denial, hopelessness, nihilism, or endless refrains of personal responsibility?
There is no systems change without individual people, us, demanding it. There is no systems change without people collectively pushing back against injustice, and making politically convenient but morally reprehensible stances unacceptable - making sure that they are politically inconvenient in the end. There is no collective action without solidarity. So will you stand in solidarity with older and disabled people, many of whom are at no less risk of death and disability than they were a year or two ago? Or will you accept unrelenting suffering and loss at a global scale, so long as (you assume) it will no longer personally affect you?
And furthermore, why do you believe that it won’t personally affect you? Do you believe you are entitled to your good health? Do you feel confident that since you do all the right things, your body will respond in-kind by never becoming sick, or frail, or injured? Do you believe there is something chronically ill people are doing wrong, to not effectively ward off their illnesses? (Hint: I have some of the healthiest habits of anyone I know my age, and that didn’t spare me one bit.) Do you believe that you, and you alone, will never grow old?
These are questions I encourage you to ask yourself, now more than ever. We — all of us — do not have time for collective denial. We need to take action, to prevent harm where we can, and to fight for broader systemic change where we as individuals cannot. We need you to act like we are all one day, one illness, one accident away from a disability. And should we be so lucky, ten years, twenty years, fifty years away from a ripe old age.
