I am happy to report that my chronic inflammatory demyelinating polyneuropathy (CIDP), an extremely rare autoimmune disease that attacks my nerve linings and for a time put me in a wheelchair and what we thought could be my death bed, remains in remission. I got the news after enduring the fourth (and hopefully last) EMG test over the past eight years. Over the course of nearly two hours, medical professionals sent electric shocks through certain parts of my body and expertly placed needles into large muscles. They also conducted a few ultrasounds, though those don’t cause the discomfort electric shocks and long needles do.
I’m also happy to report that my body is healthy again. It’s just not healthy in the way it was before I received my initial diagnosis in 2013. And it never will be.
Treatment has reversed a significant amount of the CIDP-caused damage, though not all. I can run again, five or six miles a day, just a lot slower. I can do push-ups again — far fewer than before, but still more than many. I can fold large towels without needing a nap a quarter of a way through a load of them.
That’s why my real struggle over the past few years hasn’t been CIDP. It has been trying to accept my new body. It is a struggle I see in the U.S. as we all — journalists and non-journalists alike — grapple with the complexities of a pandemic that seems not to want to end.
We are far enough into this thing to know a few things:
- 1) We have multiple highly effective Covid-19 vaccines;
- 2) In the U.S., just about every adult who wants to be vaccinated can be;
- 3) Because of low global vaccination rates, the virus is likely to periodically produce variants.
It’s what to do with or how to report the third point that has us most baffled.
Chanting “just follow the science” takes us no closer to clarity. There are sound scientific reasons to keep schools open with in-person classes, and sound scientific reasons to shift education into the virtual realm when a new variant emerges. Mask mandates can be justified by our current understanding of the science, just as allowing them to lapse or only apply to certain places and certain groups can. Vaccine passports, sending free Covid-19 testing kits to every house, requiring higher-quality masks now that they are in good supply, and limited quarantines for international travelers can all reasonably be justified by the science.
Yet many of those measures could also be opposed based on solid reasoning. Covid-19 causes serious illness and death; isolation can also do great harm. And with the announcement of a Pfizer pill that might be a game-changer for the treatment of Covid-19, possibly cutting hospitalizations of the infected by up to 88 percent, the calculus for deciding any of this becomes even murkier because it will likely convince a significant number of Americans that getting vaccinated isn’t necessary if better treatments are available. As the Biden administration, which has been heavily criticized as of late for its handling of the pandemic, rightly noted: This isn’t March 2020 when a combination of shutdowns, masking, and social distancing was the only sensible course of action given what we knew (and didn’t know) and the dearth of tools available to us.
That means it’s time for the banners on cable TV that prominently display daily and weekly case counts, numbers of deaths, and hospitalization rates to come down. That doesn’t mean our coverage of Covid-19 should disappear, just that it must shift with our new reality.
We’ve reached a point in which the U.S. has everything it needs — scientifically, at least — to curtail or effectively end the pandemic here. We have the tools, the knowledge, and infrastructure, even if it is reasonable to criticize the Biden administration for not ramping up testing options. Science made that possible. But science can’t take us the rest of the way. It’s why hospitals in some areas are being overrun again and Covid-19 remains a top killer of Americans. Going forward, our job as journalists is to make it clear to our audiences the choices we have and the choices we have made. It is to underscore that there is no going back to the way things were. To linger too long in that nostalgia will only prolong and deepen the pain inflicted upon us by Covid-19.
Our pre-pandemic world is dead. And it is not coming back.
The damage it caused is real and can’t be undone any more than I can regenerate the muscles CIDP robbed from me. It can’t be reversed by the right policy or inspired speech. There is no magic elixir to make people who don’t want to wear masks or get the vaccine adopt the risk-tolerance of those who do. Our collective fate is largely in the hands of people who don’t believe the pandemic is real or, if they do, don’t believe public health measures that might slow its spread are more important than their individual right to make their own choices. That includes tens of millions of everyday Americans and top politicians, many of whom are in the Republican Party.
This country has often prospered because of an individual ruggedness and individualist spirit. But it has also often been harmed by those very sentiments. The pandemic has made that radically clear. Science, the hard sciences in particular, can’t help us overcome that.
Because of Covid-19, we are living in a different country and a different time, one that’s scarred but which nevertheless has been nursing itself back to health. We should stop centering our economic coverage on pre-pandemic notions. There is no apples-to-apples comparison for what the monthly jobs report, inflation rate, home sales, or median income increases should look like compared to the way things were.
And as cruel and harsh as it might sound, the daily Covid-19 case count should no longer be our guide. The fact is, there are tens of millions of everyday Americans who have decided, for a variety of reasons, that they are willing to risk Covid-19, even if it might bring them or a loved one death. The truth is, they, too, can use science to undergird their rationale, for as deadly and disruptive as the pandemic has been — and it has been as bad, or maybe even worse than initial fears thought it could be — the vast majority of them won’t die or even be hospitalized.
Simply telling audiences that the number of cases has jumped 20 percent over the past week is no longer helpful. Are those cases mostly mild and moderate? Or are they threatening to overrun the healthcare system and forcing officials into the unenviable position of having to contemplate shutdowns, emptying football stadiums, or urging people not to celebrate holidays with family and friends? If a rise in cases is doing none of that, why does it matter that 400,000 Americans were reported with Covid-19 on Tuesday compared to 300,000 the previous Tuesday? If it matters, explain why.
There’s good reason to believe Covid-19 will be with us for years to come and that variants will come in waves until the world has reached a vaccination rate that makes it harder for the virus to continue spreading. There’s even better reason to believe we have every tool needed to deal with it effectively even if that means letting go of a yesteryear that won’t ever return. It’s hard for a lot of us to come to grips with this reality with so many people still dying every day from Covid-19 and our lives still being disrupted.
I struggled similarly with my diagnosis. Before CIDP, I was in the best shape of my life. I had done all the right things. but I was still felled by a disease I didn’t see coming. Though I have good insurance, have been cared for by the best specialists, and work hours flexible enough to prioritize my health, I’m still not as strong as I was before, and not one of those specialists can tell me if CIDP will knock me down again.
To fight CIDP, doctors initially prescribed an aggressive series of infusions of a drug whose side effects almost killed me even as it was healing me. They switched to a less-aggressive series of steroid infusions that brought me back closer to health without the side effects. Since those treatments ended, I’ve had to navigate the world in this new body, sometimes overreacting, thinking a particularly painful day of running could be a reemergence of the CIDP.
It’s better to be safe than sorry, I often rationalize. That’s why I was recently undergoing yet another painful EMG, having electric shocks and needles shot through my body. The science once again told me I was healthy, even if not pre-CIDP healthy.
But science can’t tell me how to live with that truth any more than it can tell us how to live in a post-Covid-19 world.