I need your help to protect my family from COVID-19: Reporter's notebook

Guarding a disabled family member from infection requires heightened vigilance.

You don’t know me, but I have a favor to ask.

I need you to help me protect my family.

I’ve been married nearly 31 years. I’ve done my best during that time to protect my wife and stepson against every imaginable danger -- from poverty, accident, injury, assault and loneliness. It’s impossible, of course.

I was powerless to protect Jackie against the heart attack she suffered two years ago. She and I both were powerless to protect Matt, her son, from the auto accident 21 years ago that left him a quadriplegic with a brain injury and epilepsy. Since then, she and I have been his primary caregivers, looking after him together each day while Jackie looks after us, and I look after them.

Jackie’s doing tremendously well, thankfully. And given the myriad of chronic health issues that come with quadriplegia, Matt’s in good health as well.

But that could easily change. Jackie and Matt are in the demographic groups at highest risk of death should they contract COVID-19, Matt especially. And we harbor no illusions that it can’t happen to all three of us.

It’s human nature to declare that calamity “only happens to other people.” It’s a necessary delusion, without which we’d cower in our homes, terrified to venture outside and risk an avalanche of innumerable possible catastrophes. But when we realize that all of us are “other people” to everyone else, then we understand that what we’re really saying is that calamity can happen to anyone. That means you and me.

My family knows this. Because it’s happened to us. And that’s why I need your help.

Jackie and I were fastidious about Matt’s health before COVID-19. It’s second nature for us to employ universal precautions against potential infectious agents, like MRSA, and to hand wash frequently. We keep masks and nitrile gloves in stock in the floor-to-ceiling closet that houses Matt’s medical supplies.

We are especially careful to safeguard Matt’s respiratory health. He was on a ventilator via tracheostomy for five months following his accident and hasn’t had so much as a head cold since. His diaphragm is so weakened by his paralysis, he’s unable to cough or sneeze. A minor chest cold that you or I could shake off in a few days would likely put Matt back on a ventilator. The shortness of breath and lung damage we know to be typical of many COVID-19 infections would kill him. If by some mad stroke of fortune it didn’t, I don’t know if he’d ever again be able to breathe on his own.

Matt hasn’t been out of the house beyond our fenced backyard in two months, other than a single lab visit because no one’s yet figured out how to draw blood via video chat. He’s otherwise not had physical contact with anyone other than his mother and I. So if he were to become infected, it would in all probability come from us.

Caregiving keeps Jackie and I largely at home -- “antisocial shut-ins,” we joke to friends -- so the pandemic lockdown is more familiar to us than not. We go out about once a week now, separately, to run necessary errands. We wore masks even while the experts still were insisting it was unnecessary -- gloves as well. We wipe down our debit cards, keys and phones afterward, and the countertops at home where the bags sat after we unpack, washing our hands several times throughout.

Some will think that’s excessive. We make no apologies. We cannot lower our guard. Matt’s life is literally at stake. I don’t imagine those still mourning loved ones lost to COVID-19 feel I’m overstating things. And yet still, I see supermarket shoppers, and staff, without masks. Our college-educated neighbors gather for driveway beer socials, or chat face-to-face during dog walks, mingling as if it's business as usual for them.

“It’s fine,” one said, via community blog post. “We feel fine, none of us have shown any symptoms.” Apparently, neither have any of them paid attention to the news.

My paternal great-grandmother died during the 1918 flu pandemic. Grandmama described how neighbors would approach the farmhouse no closer than 100 feet, shouting a warning for her family to stay inside before setting a bucket of food on the ground for them, then shouting that they were leaving. Only after waiting another minute would grandmama, the eldest child at all of eight years old, venture out to retrieve the gift.

They didn’t dub it “social distancing” then. It was dread, fear of being infected by “the influenza,” as they called it. I imagine my great-grandmama felt fine, too. Until she didn’t.

Even if Matt stays healthy, Jackie or I could get sick, leaving no one to take care of him. I’m knocking on the door of the high-risk age group. Jackie, more than a decade my senior, is there. She’s a tough woman. I’m fond of recounting how we met in martial arts class, how at less than five feet tall she once laid out a six-foot would-be purse snatcher in the middle of a mall and held him immobile while security arrived. How she gave birth to her sons at home and delivered hundreds more children as a licensed lay midwife.

Her heart attack and a few other health issues have me worried whether she’d survive were she to get sick. My heart tells me yes. My head knows the numbers. And neither am I invulnerable. I work hard to stay strong and in good health, but a virus doesn’t care how much you can bench press.

Jackie and I talk about this. About death, what happens to the household when it happens, to whom it may happen first. We must. We have to plan for it, for Matt, and for us. This unsentimental practicality in the face of obdurate realities also is what being a caregiver has taught us.

PTSD has taught us much, too. Jackie and I both developed it, born of years of near-constant, often life-threatening crises before Matt finally stabilized. My PTSD primarily manifested as hypervigilance, threat preparedness bordering on OCD. It took years for me to moderate my behaviors, some of which linger still. COVID-19 has whetted that edge anew.

But with post-traumatic stress comes post-traumatic growth. My hypervigilance has become a strength. We’ve studied the science -- at this point, there’s no excuse for anyone not to have -- and I feel confident Jackie and I are as careful, prepared and provisioned as we can reasonably be to protect ourselves and Matt from this pandemic.

But no matter how vigilant we are, it will matter less if you don’t do your part. Which returns us to the request that opens this essay.

My dominant emotion during this pandemic isn’t fear, or anxiety. It’s anger at the behaviors I see around me. At the willful denial of science, the cavalier dismissal of other people’s pain and loss, the ignorant posturing, the abdication of common sense.

But above all else, it’s the selfishness I see that pains me the most. Perhaps you feel invulnerable, or that the threat of contracting COVID-19 has been exaggerated. God forbid, you’re one of those people who believe it’s a conspiracy.

Pain is the foundation of all anger. And 21 years later, Jackie and I still grieve for Matt, and for each other. I don’t know if you’ve ever prayed by a loved one’s hospital bedside, “Dear God, please don’t let them die tonight. Just let them live through the night. Let them wake up in the morning.” I don’t know if you’ve ever experienced the helpless anger of seeing a loved one on the precipice of death and being powerless to save them, to do anything other than endure that heart-clenching anguish as you wait.

I truly hope you never experience these things. If you have, God bless you. But regardless of your experience, you have the power to help ensure I and others, and you, don’t descend into that hell.

So now that we know each other a little better, I ask again. I need your help to protect my family.

And if, for whatever incomprehensible rationale, you don’t feel you can provide that help, I promise my family and I will still do all we can to help protect you and yours.

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