My brother has daily seizures. COVID-19 restrictions are making him sicker.
Taylor Goebel | USA TODAY
By the time the electrical storm went off in Zach’s brain, Mom sensed he was about to disappear . She’d seen it so many times: The way his gaze left the table, the odd quiet from his seat, the indifference toward his dinner.
Mom had been prepping his next bite of chili. She watched as Zach suddenly convulsed, his body a stiff pile of flailing limbs, rigor mortis in motion. His legs jutted out as in a nightmarish puppet show, banging on the floor. The spasms were especially brutal tonight, and his eyes rolled to the back of his head.
For too long a moment – as she pleaded “Zach, Zach, Zach, snap out of it” while grabbing his shoulders, as he struggled to catch his breath – Mom thought to herself, “Oh my god, is this it?” She saw his face turning blue and thought about driving to the emergency room , or how she should have relearned CPR – any way to help him breathe again.
My brother has seizures every day. Sometimes focal ones, where his eyes dart back and forth like he’s rapidly scanning a novel. But lately, they’ve become more violent as my brother’s routine, so tethered to his mental and physical health, has been suspended by the COVID-19 pandemic.
The novel coronavirus has seen hundreds of thousands – if not millions – of Americans with intellectual and developmental disabilities removed from their routines and become more isolated. In some cases, the disruption has contributed to them becoming sicker.
That includes my brother Zach, whose seizures and sensory issues prevent him from wearing a mask, making it impossible for him to adapt to the “new normal” of life during the pandemic. Meanwhile, more is being demanded of caregivers like our mom, who put her career on hold while watching her son get sicker.
Mom is scared. All the things that worked for Zach for the past 30 years – the routine she sacrificed her life to build – have come to a halt.
Zach is down to 114 pounds – at his healthiest, he was 152. His arms are now stick-like and his forehead protrudes, almost like Frankenstein’s monster. He spends too many hours on the couch, immobile. He’s unable to hang out with the friends at his adult day program. He keeps skipping dinner and his cheeks are gaunt and he sleeps too much.
“Watching your child appear to be slowly dying in front of you is the worst thing in the world that you can watch,” Mom told me on the phone from her home in Milton, Delaware. These ruminations have become part of our normal calls. “It’s horrifying. Watching a parent die is really bad, really really bad, but it’s nothing compared to watching your child.”
Zach escaped the seizure on his own this time, his face reddening as he shakily grabbed a cup of water, gulping it down after a labored breath. Zach drew in a breath, picked up his fork and began eating the chili. Mom exhaled, surprised. Usually Zach is so exhausted after these kinds of seizures that he loses his appetite.
After 30 panicked seconds, it was a small win.
‘Do you just want to lay here and disappear?’
Two months after he was born, Zach was diagnosed with tuberous sclerosis complex, a rare genetic disease that causes tumors to grow in the body’s major organ systems – skin, kidneys, heart, lungs, brain. You name the organ, my brother likely has a tumor there.
He’s undergone three brain surgeries in his life, countless seizures and wet beds. One night, Mom and Poppy heard him humming “Twinkle, Twinkle, Little Star” when he was 5, but he’s never spoken a word. He laughs and grunts and furrows his brow when he’s unhappy. That’s how he communicates, and it works well enough.
Zach can’t tell us in words that the pandemic makes him anxious, or depressed, or that it suppressed his appetite and gave him terrible seizures.
It’s not like he doesn’t giggle anymore, or that he isn’t himself. If you sang “Wheels on the Bus,” he’d still laugh and clap his hands. If you bent over and said, “Give me a kiss,” he’d still lift his forehead to your lips.
But the couch is a mind-numbing place to be for the better part of a year, disability or not, especially if you don’t know when you’ll get to exist in your normal world again. The days run ad nauseum. Colorless. Tedium.
When Zach’s 30th birthday arrived in November, he hadn’t eaten dinner in five days. Five days of head turned to the side and pushing the plate away as Mom begged him to eat something. Cereal even. Oreos. Anything with calories.
As we sat down for lunch, I wished he’d pick up the fork and eat his Hot Pockets. But he pushed away the plate again. His Hot Pockets steadily lost steam, the innards deflating into a lukewarm glop of cheese and pepperoni.
I saw our grandfather – an unnerving intimation of him – in my brother’s gangly frame. He used to sit at the table like Zach, quietly avoiding our gaze until his food became a tepid clot primed for the trash. Poppy died early last year of an infection related to an aneurysm surgery, months after his appetite slowed to sherbet and an occasional egg.
“What, do you just want to lay here and disappear?” Mom asked Zach, knowing he couldn’t answer. He grinned instead.
Mom sat at the table anxiously – as she has so many times this year, waiting to hear the familiar clank of Zach picking up his fork.
For Zach, living in a pandemic is like "Groundhog Day" in reverse: Mom, his nurses and I all know tomorrow will be the exact same for him: confined to the house except for an hourlong ride on a golf cart around the same suburban streets he's been on for more than 200 days. No grocery stores, restaurants or shops.
Neighborhood walks are too dangerous, especially on the asphalt streets. Even with a nurse holding his hand, Zach might collapse into a seizure too quickly, too forcefully for her to catch him. It’s safer for my brother to ride on a golf cart with a seatbelt securing him.
Most days, Zach will eat, but we can’t remember the last time he had his usual three meals a day.
Unable to access care without a face mask
Pre-pandemic, Zach would have been awake, sleepy, stretching, giggly, groaning and messy-haired at 6:30 a.m., when the nurse arrived.
She’d pull him out of bed – after a few attempts and a willful “Zach, come on bud! It’s time to get up!” – then help dress him and brush his teeth and hair, slide his shoes on, spoon over his morning cocktail of pills and fry him up bacon and eggs before they hopped on the bus to his adult day program.
Zach would be surrounded by people with all sorts of disabilities at the day program. They’d go on trips to parks and malls and restaurants, make arts and crafts together, party during the holidays with a Secret Santa exchange and a big potluck.
Nurses still come to the house most days, but the agency they work for prohibits them from taking Zach out for a ride. They can’t even drive the golf cart.
The golf cart rides are Zach’s greatest joy right now, but it’s getting colder and he won’t be able to ride in weather below 40 degrees.
The ability to wear a mask is a privilege. It’s our ticket into grocery stores, offices, restaurants – the semblance of normalcy we all crave to some degree.
Zach doesn’t have that ticket. His seizures make it unsafe, and besides, he can’t even wear a hat or gloves without ripping them off in a panic.
“The simple mask requirement has ruined his life, and in so doing has ruined mine,” Mom told me over the phone. “I hate to see him that way. It kills me with guilt.”
In my mom’s eyes Zach’s quality of life supersedes the risk of infection.
Mom hates the mask requirement – mostly because it took so much away from Zach – while I avoid any person outside my apartment who isn’t wearing one. Our comfort levels on sitting in bars and having people over at the house are starkly different.
It’s safer for Zach to be in the house right now, but Mom would send him back to Easterseals, a national nonprofit that provides disability services such as Zach’s day program, in a heartbeat if he didn’t have to wear a face covering. I’d be too anxious to have him inside any public place without a mask, or a vaccine, or some reassurance that he wouldn’t get infected.
“The stress of being a caregiver is hard enough to bear before the pandemic, but then you add this on top of it,” said Verna Hensley, vice president of public affairs at Easterseals. “You have to make decisions of, ‘Do I keep my loved one safe? Do I not bring in outsiders? Or do I address the ramifications of what that isolation means to that person?’ I don’t know what the answer is.”
I don’t know what the right answer is either. What can I say to all the middle-of-the-nights Mom has spent on the couch, fearful for Zach, wondering when he can return to the life he once thrived in? I haven’t watched Zach diminish, day after day, like Mom has. This isn’t a frat party that had to be canceled or someone’s wedding. This is my brother’s life.
“We’re going to lose a lot of people to COVID-19,” Mom said to me, “but it won’t be because they were infected.”
Families care for loved ones with disabilities
There are more than 2,000 people with disabilities in Delaware who rely on adult day programs. When they were shut down during the pandemic, many people experienced increased isolation.
“Families are going to end up caring for their loved ones more of the time,” said Terry Olson, executive director of the Arc of Delaware, a nonprofit organization that advocates for people with intellectual/developmental disabilities. “I think they’re terrified. Many of them have chosen to take their family members home even when they were in a residential program.”
Gail Womble is one of them: She pulled her son, who has Down syndrome, out of his group home in Newark, Delaware, on March 14, just days after Delaware reported its first coronavirus case. Womble, 73, feared the virus would spread throughout the group home.
Will, 50, had been in that group home since he was 21. He thrived there, Womble said, going to Christmas parties, hanging out with friends, working.
At home, the loneliness is difficult for her son, but with COVID-19 restrictions, it is better for him, Womble said. She takes Will to the grocery store. Like Zach, Will loves pushing the cart and helping his mom out. Unlike Zach, Will is able to wear a mask.
Doctor’s appointments, surgeries and daily seizures
Taking care of Zach – the doctor’s appointments, surgeries, medications, showering and feeding and holding him through seizures – has taken up hours of my mom’s days for the past three decades.
Like being inside a pinball machine, she’s tossed from doctors to insurance companies, pharmacies and nursing agencies. But Mom had still been able to work full-time, even as a single mother.
Since March, she’s paused her job search for a financial analyst position. She’s as confined as Zach is in this pandemic.
“It’s just devastating for the family caregivers,” Hensley said. “They are now shifted into 24/7 care of their loved ones.”
Zach takes 19 pills a day, 17 of which are to control his seizures. He still has two to five tonic-clonic seizures, where he loses consciousness and his muscles spasm, a day.
Zach’s doctors tried a new medication, Felbamate, to control his seizures. My brother only has a few more seizure medications to try. He’s gone through most of them.
If they don’t work, he might need a fourth brain surgery.
Health scare in quarantine
In early September, as my brother slept on our dark blue couch, I pictured him in a coffin. Open casket, laying on his back, arms resting on his belly, which he never does. I can’t imagine my mom’s face at her son’s funeral. I never want to see that face.
I plopped on the couch by Zach’s head and wondered how the funeral cosmetologist would apply makeup over all his angiofibromas, the little red tumors that dot his nose and cheeks.
Zach was conked out because of his new seizure medication. The Felbamate had been causing serious damage to Zach’s liver, prompting his doctor to abruptly shift him to Ativan, which is usually reserved for emergency seizures.
I ran my hand over my brother’s short dark brown hair. He is not gone yet, I reminded myself. Yet. My face got hot, but I held the tears back to the corners of my eyelids. I didn’t want Mom, sitting nearby, to see me crying.
When he was 2 months old, Zach’s primary care physician told my mom he would never walk or amount to anything in life, that she may as well put him into a group home.
“He basically told me to forget about him,” she said.
My mother, an Italian American woman with a loud voice who did things her way and her way only, didn’t listen to the doctor.
Zach learned to walk at 6 years old.
A birthday dinner out gives hope
On Zach’s birthday, our family took a break from the pandemic.
It was only for a few hours, just one evening out for dinner at a restaurant.
My mom’s favorite local Irish pub had set up a separate entrance and dining area so Zach could enjoy his first meal out in more than 245 days.
They hung up shiny “Happy Birthday” and “30” signs on the brick wall at our table along with balloons and played Zach’s favorite band, Maroon 5, on a radio nearby.
Even with “Harder to Breathe” playing in the background, and Zach giggling and bopping around, it was quiet. Like a calm quiet, almost magical in how ordinary it all was.
In this soft-lit restaurant in a small Delaware town, Zach ate dinner for the first time in five days. Chicken tenders and French fries. Nothing fancy. It was perfect.
That’s what Mom kept saying. Perfect. We laughed at how amazed we were by how well Zach ate, how normal the night was. No seizures or lost appetites or problems with medicine. Fear temporarily suspended.
In between forkfuls of crispy chicken, Zach looked out the window, grinned and began dancing in his seat.
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