I hit a new pandemic low last week. CDC Director Walensky’s comments about the “encouraging” news that most vaccinated people dying of COVID had multiple comorbidities was the catalyst (see my op ed in the Philadelphia Inquirer), but my despair has been deepening for some time.
Hospitals are breaking. Schools can’t function. Services and business are disrupted. There are shortages in stores again. People we know are getting sick. COVID is blazing through, spreading more wildly than ever before. In many ways, this looks like the worst case scenario that we were all so frightened of in March 2020.
Except most people aren’t scared anymore. Everyone seems to be shrugging their shoulders and giving up hope that we can control this pandemic. “We’ll all get it,” they say, and risk death and disability with casual disregard for the consequences. Our callous treatment of the healthcare workers who must still nurse us through those consequences is appalling. Vaccines are keeping many people out of the hospital and alive, but there’s no comfort in saying that a disaster could be worse.
One of the root causes of our current situation is the individualizing of the pandemic. Mask wearing, social distancing, vaccination–there are no mandates for the general population anymore, just under certain circumstances. We have relegated public health measures to individual choice, opening the door to misinformation and conspiracy theories, and silently giving people permission to be selfish or myopic in making those choices.
The belief that vaccinated people would be fine drove the early end of CDC’s masking recommendations last May. Not only was this overconfidence, but it placed emphasis on the individual’s choice to vaccinate over and above masking’s role in reducing the spread of infection. Policymakers lost sight of the benefit of layering protection. By making it about individual choice, we set aside collective and community-level thinking.
You might think your vaccination or mask choice is just about you and your family, but it’s not. It’s about every single person you come into contact with every single day. If you are infected (which is possible even if you are vaccinated) then you could be passing the infection to anyone in your path (although wearing a mask would lower that risk). Other people could be vaccinated and masked and still catch the virus from you, particularly if you are not taking steps to prevent passing it along.
How many of the people you come into contact with are vulnerable or high risk in some way? You can’t look at a person and know if they have diabetes or cancer or autoimmune disease. Your coworker might have high blood pressure, and you would never know. What about the family members of people you interact with? It’s impossible for you to know that the teenager you sat next to on the bus lives with elderly grandparents, or that the clerk at the convenience store has a child with cystic fibrosis. Yet your behavior and choices place all of them at risk.
No one is safe until everyone is safe. That’s not a hyperbolic slogan. It’s science. But we’re not thinking about it that way. Whatever collective motivation we had to flatten the curve two years ago is gone now. People have decided they’re “done” with the pandemic–as if what we want has anything at all to do with it. Our government and public health apparatus has completely failed to remind people that public health requires action from everyone.
Public health measures, which should be about science, have become politicized hot potatoes. We’re fighting about whether to mandate masks or vaccines, instead of coming together to fight the virus. COVID is never going away. We do have to find ways to live with it. What I don’t understand is why living with it can’t include minimizing disease and transmission. Why can’t we take steps to protect one another from the worst impacts of COVID? We live together in a community, with a social contract. Why doesn’t that social contract mean that we do what is necessary to limit the damage of this historic pandemic?
I don’t want division, but we are divided. Some of the people I love are not vaccinated. I love them just as much, and I don’t want to be separated from them. Yet in order to protect my own life, I cannot spend time indoors with these dear ones. Their choice to forego vaccination has taken my choice to interact with them. They have made that choice for me.
I want this pandemic to be over. I want to leave my house again without wondering how many infected people are crossing my path. I want to interact with my friends and community again. But America has decided that the individual choice to forego precautions is more valuable than my safety. I don’t understand how that calculation balances out.
I know I’m not alone in wearing despair that cloaks my rage. Read what people are saying, like Amil Niazi, a parent of children under five, who writes, “I’m angry, sad, frustrated, obliterated, abandoned, but more than that and worst of all, I feel nothing.” Read these powerful words from disability justice advocate Mia Mingus:
You are not entitled to our deaths. You are not entitled to the deaths of our loved ones in the name of capital, privilege and “normal.” You are not entitled to our silence about our pain and suffering and the wet tar grief that envelops us. You are not entitled to our fear and terror at the worsening conditions and chaos of this pandemic, wondering if we will ever be able to safely leave our homes again.
The effects of this pandemic will stretch years into the future, and many books will be written about it. There will be many reckonings at all levels of public life, and continued grief in individual lives. But one thing I don’t think most people realize is that there will be a reckoning over whose lives and choices were valued, and whose lives and choices were tossed aside.
Ten Years of Unreal Time
Ten years ago today, I tapped the internet microphone and published the very first post on this blog, then known as Occupy CFS. My intention was to step into the light, to bring attention to the disease by writing openly about my own experiences, as well as the politics of our movement. Hundreds of posts later, I can say that I have done my utmost to achieve that goal.
There is something odd about the passage of so much time, though. Since the pandemic began, people have joked that time has no real meaning any more, but I have felt that way for more than a decade. I have few exterior milestones to mark time–no job changes or growing children. Where I live, late fall through early spring looks exactly the same when viewed through a window. Sometimes, I can’t remember what month it is.
Ten years feels like an interminable and unchanging tunnel of days, each one like the one before and the one after. Living housebound with chronic illness is a grind, and it has worn me down, much the way that centuries of footsteps wear down the stone steps of a cathedral. Yet so much has happened in the last ten years that it also feels like the time has passed in a few blinks. I’m always a tiny bit surprised when I remember my age–how did that happen?
If I had made predictions ten years ago, I would have said that I would still be sick today and that ME would still be grossly under-recognized and underfunded. Those outcomes were easy to anticipate and have proven true. Other predictions would have been wildly off base. Ten years ago, I had no intention of writing a memoir. I never could have guessed that my husband would become disabled, too, nor the ways that grief and loss would change my life.
I have always been a self-starting, goal-oriented person. I don’t wait to see what happens; I chase desired outcomes. This blog and my advocacy are a manifestation of my drive and determination, and I have pursued both at great personal cost. What’s odd about where I am now is that I don’t have much of a plan. I’m working as much as possible on my book, but I don’t know if it will ever see the light of day or how I can make that happen. I can’t begin to guess what might happen in my life or in ME advocacy over the next ten years.
Pierre Teilhard de Chardin wrote a beautiful poem called Patient Trust that captures this feeling I have of being in between:
ME advocacy has been irrevocably changed by the pandemic and Long COVID. Perhaps we are closer to treatments, or at least greater research investment. It is too early to say. And perhaps I will finish my book. Perhaps you will read it. It is too early to say. Progress takes time.
I didn’t start this blog with an end goal or timeline in mind. I just wanted to speak loud enough to be heard so that I could make a contribution to our fight, and I hope I have succeeded. As much as we have accomplished in the last ten years, there is more work to do. I’m here for it, for as long as it takes–even if I’m not quite sure what that will look like.