I’m happy for friends and family who, as they get vaccinated, look forward to resuming travel, family visits, and hikes with friends. The vaccine is great news not only for its potential to dramatically reduce further deaths but also for everyone who has found themselves at their wit’s end over the past year.
But the past year has had unforeseen consequences for many. From loved ones who died needlessly because American policymakers prioritized business over public health to tens of thousands who have now joined the ranks of the disabled after surviving COVID, the fact is many people don’t have the option of returning to normal. That normal is gone.
And for many of us who entered this pandemic with pre-existing chronic illness, it has had profound effects on our health and functionality.
I find it hard to not feel some bitterness toward those who contributed to this situation. The American ethos of individual freedom only works if your liberties don’t trample on mine. But too many have pretended that their actions have no impact on others.
If they do acknowledge that their choices have consequences beyond themselves, those “others” don’t count. Millions of Americans have communicated through their behavior that they believe the elderly, the immunodeficient, and anyone else with conditions that make them more susceptible to severe COVID are better off dead. Over public health, my country favored in-person businesses, travel, and church services. The result is the highest death toll in the world: 562,000. Which is sure to be higher by the time you read this. The enduring effects of our reckless approach to public health will take years, if not decades, to untangle.
But as the pandemic rages on, one effect I can already tell you is that my disability is worse. Worse than it was in a world without COVID, and worse than it needed to be in a post-COVID world if individuals had considered the greater good. I can’t say whether the worsening will last months or years. I only can tell you it’s now impossible for me to work full-time, and it’s getting harder to work part-time.
Migraine is an oversensitization of the nervous system that is genetic and incurable. For many, especially those with a history of child abuse or other trauma, the disorder worsens over time, and for 2% of the world population, the episodic nature of the disease eventually transitions into chronic where at least half the month is spent in a migraine state with various motor, linguistic, and sensory impairments. Once it transitions from episodic to chronic, it rarely reverts, and treatments become less effective. So it’s unsurprising that globally, the WHO reports migraine is the sixth highest cause of years lost to disability.
Holding onto any measure of functionality with chronic migraines is hard-fought. It took me years to be able to jog again, years to tolerate going on a hike with friends, years to withstand being out in the sunlight. And now? Having spent a year locked down in a neighborhood where most people neither wear masks nor socially distance, I haven’t had the option of responsibly going outside on a routine basis.
Once my husband was diagnosed with a pulmonary embolism this winter, we were directed to stop doing anything other than mandatory medical care. So the systematic, necessary exposures I need to keep my nervous system desensitized to sunlight, fluorescent lights, and noisy environments like cinemas, crowded parks, grocery stores, and restaurants have fallen by the wayside.
As a result, my migraine threshold has once again plummeted. A sunny day glimpsed through a window, a student who sings too loud in my online classroom, or even a change in humidity or atmospheric pressure, and suddenly I can no longer see, speak, or stand up. Stimuli like sunshine and noise that required years of discipline, practice, and systematic exposure for me to tolerate are, once again, impossible for me to be around without losing days or weeks of functionality.
Now, the challenge is how do I break this to my friends and family? As my nephew gets excited to see me in-person, as my in-laws start planning visits, as friends want to return to our old hikes, how do I tell them? How do I tell them that “normal,” for me, is not a place I can return to? “Normal,” if I ever get there again, is probably months or years off. They’re going to have to head to that new country without me.
How do you tell the people you love that they have to leave you behind?
I am not the person I was before the pandemic.
Few of us are.
In the beginning, I believed people could be good. Maybe even wanted to be. My father was so cruel, my family so violent, the only way I could keep going was to believe there was something on the other side. The world had to be better. Out there, beyond my abusive family, people understood our lives are linked. We are responsible for each other. Not out of altruism, but from the understanding that we can’t make it alone.
Other people built this computer I’m typing on, crafted the teacup I’m sipping from, wired my building for internet, monitor the electrical grid that keeps it all running. Other people taught me to read, to write, to use a computer. Humans, it is often said, are social animals. From the discovery of fire, passed down the generations, to the invention of the internet as a way to communicate, our interdependence on one another remains such an evident fact that it hardly bears saying.
But many people in the United States refuse to acknowledge reality. In the same way they insist the earth is flat, they are determined to believe that their choices impact no one, and no one else’s choices should impact them. And the best way to ensure that anti-social fantasy? To acquire power, so they can do what they want and other people pay the consequences.
This was my father’s worldview, and he often justified abuse by saying this was just how the world was, and you had to live in it. It’s dog eat dog. It’s every man for himself.
At bottom, his message was always the same: I worked hard to buy this property, so now I can do what I want on it, even if that means hurting you, and nobody gets to give me shit about it.
But over the last year, I have lived in a community where many people have conducted themselves exactly as my father did. They have done what they wanted, regardless of whether it hurts anyone. They make choices based on what is convenient or fun or comfortable. Which is not freedom. It is selfishness.
No one knows when the pandemic will actually end. This is a problem even for past pandemics. Historians and epidemiologists quibble over death tolls and end dates. There will never be one moment that everyone on earth will point to and agree that was when COVID-19 ended its reign of terror.
Nonetheless, it will end. Whether that’s 2021 or 2031, it will eventually be over. And many people like me will not be joining you out in the street to celebrate. Because we can’t. Whether it’s long COVID or chronic migraine or something else, we will still be living with the limitations that everyone else can leave behind.
I will still be living my life mostly in one room, behind a computer screen (on my good days) just as I have for the last five and a half years. Just as, given the reality of chronic migraines, I can expect to for the next 45. I’m not complaining. It’s my life, and I like my life. I value it.
I love my students. I adore my husband. Josh and I joke that our home is its own MFA program with book and DVD-lined walls echoing our conversations about storytelling that never end, really, but just are put on pause. I love our fluffy cat Apollo. Our pajama-party date nights. The friends who, thanks to email and Zoom and Skype and FaceTime, have filled my life with laughter for years. It isn’t the life I went to grad school for, and yes, it’s hard sometimes. But it’s also just life. And I’m glad to be here.
But here’s something I’d like to say. I know it’s probably tilting at windmills. After all, if my society didn’t care if chronically ill people died, why would they care about accessibility? But let’s say they might.
Let’s say maybe a few people out there are feeling a little embarrassed over how panicked they were, and the way that panic led them to advocate against life-saving measures. Or to do things that helped spread a deadly pandemic. Maybe they’re realizing their selfishness probably hurt people. Even might have killed people.
Maybe they’re feeling a little guilty.
Well, if that’s you, there’s something you can do. It doesn’t make up for it. But it can help those left behind in the wreckage.
Advocate for accessibility.
If your church has started providing online services during the pandemic, ask them to keep those going. If your writing group or Toastmasters club or dance school has added online activities to the docket, let them know you’d like to see those not only continue but get promoted online. Post videos to YouTube, so people don’t even have to attend at a specific time. Suggest that maybe they add captions (your organization can drop files at places like Rev.com to get them captioned for the Deaf and hard-of-hearing). In meetings, let your employer know that you fully support work-from-home options and expanded online offerings.
My point is this.
Maybe the pandemic really is about to end (fingers crossed). You’ll get your vaccine, and the rest of your family will get theirs. And then you are going to head back to your life, rebuild what used to be as best you can. It’s going to feel weird for a while. And you’re going to have to adapt to the changes, and that will be hard in its own way. You’ll feel happy sometimes. Sometimes you’ll feel anxious or like your shoes are on the wrong feet. And sometimes, in eerie moments, it will feel like the past year never happened at all. But eventually, given time, your normal will be mostly normal. And you’ll be grateful to have it back.
And that’s as it should be. Celebrate. Really. You’re still here. If I’ve learned anything from chronic illness, that’s a big one. We all have to party sometimes.
But don’t forget about us. The ones who are still here in our own personal lockdowns. The aging, the ill, the severely disabled. When I ended up shut into a single room years ago, I lost so many communities. I reached out to them and asked Have anything online I could participate in? The answer was always no. And I plunged into a deep depression because of it. After COVID, many of you now know what I’m talking about.
But you know something else, too. Remember how great it was to be able to log into a screen and see a friend’s face for the first time in weeks or months? Remember the glow that bloomed through your chest, the warmth in your stomach, the softening of your shoulders? The world hadn’t forgotten you. It still existed. It was still there. And you were still, in some small way, a part of it.
And when you exit these online spaces we’ve all built together, leave the lights on for us. Keep the door open. And sometimes, throw your parties here. So we can join you.
We’re part of the world, too.
So save a seat for us.