You speak of and for me. I could have written every word of it, except it’s me that’s vulnerable - and it wouldn’t be nearly as brilliantly expressed!
So much stood out, it’s impossible to choose. But the sentence below sums it up for me - both my 50 years of complex chronic illness (which includes Transverse Myelitis like your son) - and navigating this pandemic in a world of full of people who couldn’t give a damn about the most vulnerable, who have no idea what it means for us and no desire to understand:
‘Every single step along the way had a level of fight that is hard to articulate for the uninitiated.’
Thanks for your terrific, warm, funny, intelligent insightful, comforting way with words. I look forward to them now, you help me stay sane and keep going.
You brilliantly describe life as I know it now. I've only been dealing with it since December of 2021. My first and only covid infection. I caught it on a flight from Iowa to California for a Christmas trip. The first flight I had taken in decades. I had never seen the ocean at 50 years old. I was masked the whole trip, except I took my mask down to eat a snack on the plane. (We didn't have all of the information then that we have now about Covid). That bucket list trip turned into a nightmare. I became I'll & lost my taste/smell on 12/28/21. Thinking that I wouldn't be allowed on a plane to get back to Iowa, my bf & I started driving back from California. We made it as far as Tucson before I started having trouble breathing. I was hospitalized from 1/2/22-4/1/22. 62 of those days on a ventilator. My kidneys failed, I had several cardiac events, and a brain bleed that led to seizures. I don't know how I survived, but I did. Pre-covid, I was an athlete and full-time employed as an accountant. Today, I am disabled and terrified of what another Covid infection could do. I am cut off from the world and am painfully aware that I am disposable in the eyes of the back to normal crowd.
Romunda, I want to say I have no words because what you describe is just terrible and I don’t want to detract from its power.
But I have so many.
It is beyond horrific and wrong that we have just turned our backs on so many people who need the very opposite. That the responsibility for care and support and love is left in the hands of those already exhausted at a cellular level from the trauma of the proximity of catastrophe.
I don’t know how we got here as people but I’m not even close to proud of it.
I can’t do much but I can guarantee a lot of sweary gags about how it feels ❤️
I am right there with you -- trying to protect my 28yo child who has suffered debilitating unexplained illness for 15 years. Massive negative reaction to mRNA in 2021 makes it impossible to have even that line of protection.
Isolation is our life together and sometimes I break down.
My son was flagged at 3 years old as someone who could not be safely vaccinated. We are two decades past that and I’ve managed to keep him safe until now. But seriously… safe means NO LIFE? Come on…
Yes our very nature wants to move towards people and yet we need to avoid them.
We’ve found ourselves moving life around to doing things during the week not the weekend when everyone else does.
My question is WHY? Why do the people, who used to be protected, elicit empathy, now seem to be a fundamental threat?
It must be some complex psychological response. Maybe something like this. I want to feel empathy and support for vulnerable people. But to do so I have to confront something that I can’t psychologically deal with any more - covid.
I honestly think we are the embodiment of what people fear accepting the most. That Covid isn’t gone, that it’s as serious as it felt when we knew nothing about it, that it could do damage.
But like you, I really can’t get close enough to really examine any of these things. Even in distanced conversations I can feel the other person’s psyche scrabbling to be let free from the necessity to speak.
We're a masking family too for me and my daughter, both chronically ill. I've just started a local craft/art group for chronically ill people, we all mask & have an air purifier, so we can have some meet ups over the winter that don't involve rooms of unmasked people!! We're hoping to do some other masked get togethers, and some of the people in the group are campaigning for safer air in schools and medical settings, I think these movements are gaining traction.
Amazing article Valerie.
You speak of and for me. I could have written every word of it, except it’s me that’s vulnerable - and it wouldn’t be nearly as brilliantly expressed!
So much stood out, it’s impossible to choose. But the sentence below sums it up for me - both my 50 years of complex chronic illness (which includes Transverse Myelitis like your son) - and navigating this pandemic in a world of full of people who couldn’t give a damn about the most vulnerable, who have no idea what it means for us and no desire to understand:
‘Every single step along the way had a level of fight that is hard to articulate for the uninitiated.’
Thanks for your terrific, warm, funny, intelligent insightful, comforting way with words. I look forward to them now, you help me stay sane and keep going.
Amanda🙏💜
My house just got a little dusty.
I can’t explain how much it means to know there are others, so close to us on this road, that experience and feel the same thing.
It absolutely staves off that cold hand squishing my heart. ❤️
You brilliantly describe life as I know it now. I've only been dealing with it since December of 2021. My first and only covid infection. I caught it on a flight from Iowa to California for a Christmas trip. The first flight I had taken in decades. I had never seen the ocean at 50 years old. I was masked the whole trip, except I took my mask down to eat a snack on the plane. (We didn't have all of the information then that we have now about Covid). That bucket list trip turned into a nightmare. I became I'll & lost my taste/smell on 12/28/21. Thinking that I wouldn't be allowed on a plane to get back to Iowa, my bf & I started driving back from California. We made it as far as Tucson before I started having trouble breathing. I was hospitalized from 1/2/22-4/1/22. 62 of those days on a ventilator. My kidneys failed, I had several cardiac events, and a brain bleed that led to seizures. I don't know how I survived, but I did. Pre-covid, I was an athlete and full-time employed as an accountant. Today, I am disabled and terrified of what another Covid infection could do. I am cut off from the world and am painfully aware that I am disposable in the eyes of the back to normal crowd.
Romunda, I want to say I have no words because what you describe is just terrible and I don’t want to detract from its power.
But I have so many.
It is beyond horrific and wrong that we have just turned our backs on so many people who need the very opposite. That the responsibility for care and support and love is left in the hands of those already exhausted at a cellular level from the trauma of the proximity of catastrophe.
I don’t know how we got here as people but I’m not even close to proud of it.
I can’t do much but I can guarantee a lot of sweary gags about how it feels ❤️
I am right there with you -- trying to protect my 28yo child who has suffered debilitating unexplained illness for 15 years. Massive negative reaction to mRNA in 2021 makes it impossible to have even that line of protection.
Isolation is our life together and sometimes I break down.
It’s so freaking hard.
My son was flagged at 3 years old as someone who could not be safely vaccinated. We are two decades past that and I’ve managed to keep him safe until now. But seriously… safe means NO LIFE? Come on…
Yes our very nature wants to move towards people and yet we need to avoid them.
We’ve found ourselves moving life around to doing things during the week not the weekend when everyone else does.
My question is WHY? Why do the people, who used to be protected, elicit empathy, now seem to be a fundamental threat?
It must be some complex psychological response. Maybe something like this. I want to feel empathy and support for vulnerable people. But to do so I have to confront something that I can’t psychologically deal with any more - covid.
I honestly think we are the embodiment of what people fear accepting the most. That Covid isn’t gone, that it’s as serious as it felt when we knew nothing about it, that it could do damage.
But like you, I really can’t get close enough to really examine any of these things. Even in distanced conversations I can feel the other person’s psyche scrabbling to be let free from the necessity to speak.
We're a masking family too for me and my daughter, both chronically ill. I've just started a local craft/art group for chronically ill people, we all mask & have an air purifier, so we can have some meet ups over the winter that don't involve rooms of unmasked people!! We're hoping to do some other masked get togethers, and some of the people in the group are campaigning for safer air in schools and medical settings, I think these movements are gaining traction.
That is brilliant. I really hope more of these things get a bit of oomph behind them.
Life can still be life and be safe ❤️
❤️