‘I’m tired of being afraid’ – nj.com – nj.com

The party invitation seemed harmless enough.

A core group of friends would gather outside in a Jersey City backyard, celebrating after the rollout of COVID-19 vaccines.

When Bojana Coklyat and her husband arrived that day in late May, they found more people than they expected — about 20. Still, they were told not to worry: Everyone had been vaccinated.

But in the middle of the party, Coklyat — who is visually impaired — overheard someone saying they planned to get vaccinated. Alarm bells started ringing in her head.

They were gambling with her life.

Coklyat, 42, is an organ transplant recipient who takes immunosuppressive drugs that prevent her body from rejecting her kidney and pancreas. Those same drugs can significantly weaken her immune system’s response. If she were to contract the coronavirus, she could be particularly vulnerable to its most dire complications.

“Well, I’m vaccinated, so I feel safe,” Coklyat thought, trying to focus on enjoying the party.

Two weeks later, she didn’t feel safe anymore.

Coklyat was startled to discover nearly half of vaccinated transplant patients did not have antibodies after receiving both doses of either the Moderna or Pfizer/BioNTech shots, according to a landmark study. Doctors told transplant patients to act as if they were never immunized.

“The mental relief of being vaccinated has kind of been taken away, which is exhausting,” Coklyat tells NJ Advance Media.

The Jersey City resident is among the million people in New Jersey with compromised immune systems, disabilities or chronic conditions, many of whom remain at high risk, even when fully vaccinated.

While much of the public has abandoned masks, transplant recipients, cancer patients and those with autoimmune diseases or disabilities know a false sense of security could mean the difference between life and death. They remain vigilant, whether they’re inoculated or not.

They are people like Coklyat. Krystle Allen, who has diabetes and is legally blind. Judith Nahlamiley Mills, who has lupus. Steve Way, who has muscular dystrophy. And Maysoon Zayid, who has cerebral palsy.

They are actors, comedians, artists, teachers and disability advocates. They are siblings, daughters, caretakers and lights in their communities. They don’t view themselves as tragic figures or inspirational heroes. They just want to be heard.

For months, many with disabilities or chronic conditions were forced to put their lives and careers on hold — battling isolation, anxiety and depression — even as the rest of the state returned to something approximating normal life. But the threat of COVID-19 has still not abated for vaccinated transplant recipients like Coklyat and others with compromised immune systems — and in fact may loom for years as an endemic disease, experts say.

“I’m tired of being afraid,” Coklyat said in January. “I’m really tired.”

NJ Advance Media spent 14 months with members of the disabled and high-risk community, exploring the dangers and constraints they faced as the pandemic’s second and third waves arrived, vaccines were introduced, the highly contagious delta variant swept the globe and a vaccine booster dose was approved for Americans.

Now that infections are again surging and breakthrough cases are on the rise, just leaving the house poses potentially lethal consequences for those at high risk. At least two-thirds of the state’s 24,074 COVID-19 deaths confirmed through Aug. 25 involved people with underlying conditions, according to the Department of Health. Just 535 did not, while more than 7,700 remain unknown. The underlying conditions included cardiovascular disease, diabetes and immune-compromising conditions.

”The message is that people are still vulnerable,” said Dr. Lincoln Miller, co-chief of infectious diseases at Saint Barnabas Medical Center in Livingston. “You’re vulnerable if you’ve been vaccinated, and you’re more vulnerable if you’ve been vaccinated and you’re immunocompromised.”

Over the course of the health crisis, the pandemic has laid bare inequities that chronically ill and disabled people face on a daily basis in public spaces, transportation, health care and employment.

For years, the disability community has been fighting for accommodations like remote work and telemedicine. When the virus hit, both were suddenly possible. Since vaccines led to eased restrictions, those gains are in danger of being lost, and in some cases, are already gone.

“We do not value disabled lives as much as we value able-bodied lives,” Coklyat says. “We saw examples of that over and over.”

Not long after the pandemic first engulfed the state, Javiera “Javi” Rodriguez — one of Coklyat’s good friends — died from COVID-19.

Rodriguez, 43, was an artist and school social worker who had myasthenia gravis, an autoimmune neuromuscular disorder that can cause muscle weakness and breathing problems. The condition is often treated with immunosuppressive medicine.

“I think that really set the tone for me,” Coklyat says. “How real this was and how dangerous it could be.”

The world closes in

Steve Way understood that everything was about to change.

He was working as a substitute teacher on March 12, 2020, the day after the World Health Organization declared COVID-19 a pandemic.

In class at Rutherford High School, Way joked that if anyone coughed, he just might have to murder them.

It would be the last time in nearly a year that he had close contact with the general public. For months, he quarantined at home.

“The longer this goes on, the longer it affects my long-term health,” he said in December. “It affects my housing. It affects my employment. And it affects my sanity. It goes so much deeper than me just not being able to leave the house.”

Multiple conditions put Way, 30, at high risk for COVID-19. He was born with Ullrich muscular dystrophy, which causes progressive muscle weakness and respiratory problems. He has decreased lung function as well as heart disease.

Way, who wears half-rimmed glasses and a goatee, gets around in a motorized wheelchair. He uses a continuous positive airway pressure (CPAP) machine and a ventilator in his nostrils to help him breathe. The device creates an intermittent whooshing sound as he speaks.

“I do have a very good immune system,” Way said in December, the ventilator pumping away in the background. “But my lungs are not good. If I get it, would I be able to fight it before it gets worse? Or would it just kill me in a day?”

Before the pandemic, when Way wasn’t working as a substitute teacher, he was in front of the camera.

The actor is best known as the acerbic best friend in the hit Hulu series “Ramy” alongside his real-life best friend, Ramy Youssef. The New Jersey-set dramedy mirrors real life, with Ramy helping Way’s character — also named Steve — with everyday tasks.

Way and Youssef met in middle school and bonded in the wake of Sept. 11 through a shared outsider status — Way because of his disability and Youssef because of anti-Muslim prejudice following the attacks.

Way is also a stand-up comedian, traveling to gigs across the country.

Suddenly, it was all taken away.

COVID-19 meant that Way couldn’t teach. He couldn’t perform as a comedian. And he couldn’t act, even as more people discovered his work in “Ramy” during the pandemic.

Way could not risk sharing a space with anyone who might have been exposed before vaccines arrived. At first, he thought he would stay planted where he was — at home with his family in Rutherford.

It turned out not even home was safe.

In July 2020, his sister Gianna tested positive for the coronavirus.

“I was literally out of my house two or three hours later,” Way said.

He moved to East Rutherford with his girlfriend, Victoria Osborn.

On a Tuesday morning in mid-December, Osborn, 28, assisted Way with a bagel in the living room. He was perched at a laptop in his wheelchair, his ventilator wrapped around his head and connected to a tube, putting an indent in his light brown hair.

While some complained about mask fatigue, Osborn — who works for an aviation catering company servicing Teterboro Airport — was especially careful, knowing she could expose Way.

“They don’t have someone like Steve at home,” she said.

Nine months into the pandemic, Way still couldn’t teach or perform at comedy gigs. COVID-19 postponed plans to film a third season of “Ramy.” And his unemployment benefits were about to run out.

“My problem is I need someone with me basically all day,” said Way, wearing a Chelsea F.C. mask over his ventilator. A towel hung around his neck, covering a heating pad that he uses to prop his head forward.

Exposure to home health aides posed a risk. He instead relied largely on family and friends.

“Right now I really don’t have agency over my life,” Way said. “I can’t decide when to go to the bathroom or when to eat or when to shower or when to lie down and just take a nap. I have to schedule all of that.”

In one of his TikTok videos, he powers his wheelchair around the kitchen, heading nowhere in particular. The caption: “Me not leaving my house because of COVID.”

The pandemic pushed Way to seek therapy online.

“It’s hard because I know my man likes to be social,” said Way’s friend Zack Birthday, sitting in the living room wearing a mask.

As society shifted to become “virtual” everything, Way noticed something.

“Disabled people have been asking for accommodations like working from home or doing telemedicine visits for years,” he said. “And nobody ever listened to us. But as soon as it happened to able-bodied people, you know, then we get it.”

Now, Way fears these options will disappear once the pandemic ends.

Fully vaccinated in the winter, he was able to return to Rutherford High School in June. He also launched a comedy comeback, booking stand-up shows in New York, New Orleans and Los Angeles.

“I’m alive!” Way exclaimed in June, addressing a small crowd in Manhattan.

He’s excited to be in front of the camera again — with precautions — for the third installment of “Ramy.” And Way has been working with Youssef on a new scripted TV series that will focus on how his character — the lead role — navigates life.

While the series was originally intended for Apple TV Plus, executives at the streaming service passed, Way said, because they wanted his character to be a beacon of positivity. They worried audiences would be “uncomfortable.” The show remains in the works.

“They wanted me to make people feel good,” he said, to “water down” his story. “I told them at our pitch meeting this show is not going to be like that.”

Despite vaccines — he’s planning to get the booster next month — Way finds it “very discouraging to see people just think that we can go back to normal.”

“I think normal is dead, and we shouldn’t go back to normal because that normal wasn’t working,” he said. “Normal got us into this situation to begin with.”

Facing COVID … and racism

Doryann Allen has seen what the coronavirus can do.

As an emergency room technician at a New York hospital, she is an eyewitness to the suffering and death the pandemic has wrought.

“I saw all the refrigerator carts that were getting filled up with the bodies every day,” Allen, 56, said in February.

She worries about her daughter, Krystle Allen, who is legally blind and has Type 2 diabetes, a COVID-19 risk factor.

For those like Krystle, who have chronic illnesses and disabilities, the coronavirus became a daunting threat on top of monitoring symptoms and balancing work and advocacy.

But Krystle is a caretaker, too.

She checks in on Doryann, who was diagnosed in March with breast cancer and underwent a double mastectomy.

Krystle, 37, also prepares meals for her father, Richard Whitten, and her 74-year-old uncle, Edward Ransom. Whitten was diagnosed in January with leukemia, and like Doryann, received chemotherapy.

“I’m used to taking care of people,” says Krystle, the eldest of seven children.

The Newark resident also manages her job in community outreach and her nonprofit, Eyes Like Mine, an organization that advocates for people who are visually impaired or blind.

“It does get overwhelming,” she says. “But I’m supposed to be doing this work. It’s not in vain.”

Krystle has been legally blind for 21 years. She started losing her vision when she was 16 as a result of an antibiotic treatment for eczema. She developed pseudotumor cerebri, or “false brain tumor,” a condition that mimics tumor symptoms — severe headaches and increased fluid and pressure around the brain, optic nerve and spine.

She underwent two eye surgeries and 22 spinal taps to remove cerebrospinal fluid and had a shunt placed in her brain.

Krystle was told she would be blind by 30. She can recognize objects, just not detail.

A few months into the pandemic, her right hand would not stop itching. She thought it was an eczema flare-up. A doctor said dermatitis.

But in the summer of 2020, her brother Nick discovered an open wound on her finger. Going to the emergency room was a frightening prospect. Krystle thought of all the people who went into the hospital and never came out.

“If I was to get diagnosed with COVID, I might not be so lucky,” she said in January from the sunny yellow house formerly owned by her grandparents, her voice filled with concern.

Once she arrived at Mountainside Medical Center in Montclair, she says she faced even more obstacles — discrimination as a Black woman with a disability. She called the experience “devaluing.”

“Especially in this COVID time, people with vision impairment, people with disabilities, are really mistreated because of the lack of knowledge of medical professionals,” Krystle said in January. “They have no idea how to interact.”

Doctors whispered in front of her as if she wasn’t there. After a nearly 10-hour wait, she tried to tell them that she was a “hard stick,” meaning it could be difficult to get a needle into her vein. But she says hospital staff ignored her, trying about 10 times.

“The doctor was saying because I’m Black and dark that he would not be able to find a vein,” she said. “And I’m like, ‘Well, I think Black people have been getting IVs as long as it’s been available to get them in hospitals.’”

After she was transferred to Hackensack University Medical Center to see a hand surgeon, she asked for directions to a restroom. But the staff insisted she use a bedside commode, saying there was no one available to accompany her for her own safety — not that she wanted company, she says.

When she questioned this, a nurse said she was being “difficult.”

On her fifth day in the hospital, she finally saw a hand surgeon and was told she had an infection, she says. Krystle requested a diabetes screening.

Her hunch was right.

NJ Advance Media asked Hackensack Meridian Health, which owns both hospitals, about Krystle’s treatment.

“High-quality, equitable and compassionate care is at the heart of everything we do at Hackensack Meridian Health,” a spokesperson said. “We take every patient’s concern seriously and our care experts are reaching out to this patient to discuss her experiences.”

Krystle’s health crisis, following the unexpected death of her grandmother — who passed away from a non-COVID ailment while holding her hand — left her feeling depressed.

In April, Krystle attended another funeral. This time it was for a friend, a former finalist in her Ms. Blind Diva Empowerment pageant who died from COVID-19. Like Krystle, she had diabetes.

“This is an unusual time for a lot of people, but in particular people with disabilities, because even before COVID, a lot of people with disabilities suffered from depression,” she said. “Being quarantined doesn’t help with staying socially engaged.”

Before the pandemic, Krystle navigated public transportation using a custom bright purple cane with a gold tip. COVID-19 forced her to stay inside.

She still came face-to-face with the virus.

Her uncle tested positive for COVID-19 just before Christmas, possibly exposed by a home care nurse. Krystle quarantined for 10 days and experienced a loss of smell.

But a rapid test showed no evidence of the coronavirus, and she could not access the results of a PCR test with her screen reader, which turns text into spoken messages.

Today Krystle is fully vaccinated, although she’s undecided about receiving the booster. But she is careful about her exposure, with a mask always at the ready.

‘The girl in the bubble’

Judith Nahlamiley Mills was on a flight returning from Europe before the pandemic when the man sitting next to her asked a question.

“Are you contagious?” he said, referring to the mask she wore.

“No, I’m not,” she replied. “You are … to me.”

Mills has lupus, an autoimmune disease that can attack the body with a constellation of symptoms. The condition has caused inflammation in her kidneys, and she has a low level of white blood cells called neutrophils, which makes her vulnerable to further serious illness.

Mills, a Montclair resident in her 30s, regularly injects Benlysta, a drug that alleviates lupus symptoms, but suppresses her immune system. It leaves her at risk for infections, such as the coronavirus.

“My doctor says, ‘You are the girl in the bubble,’” she said.

She was so concerned that the drug would impair her defenses against COVID-19, she stopped taking it for a few days.

“It was very scary in the beginning,” said Mills, who came to the United States as a child from Ghana. “I got over the fear, but then I became afraid of people who are being reckless.”

Mills knows she must be careful.

She once reserved masks for travel or medical offices, despite her doctor’s advice to wear them everywhere. Then she contracted an upper respiratory infection in 2019 that landed her in the hospital for five days — exposed by a coughing Sunday school student.

“Who is at risk when unvaccinated people don’t wear their masks? The unvaccinated people and people who cannot have a good vaccine response — vulnerable, immunosuppressed people, of whom there are millions in this country,” says Dr. Dorry Segev, a transplant surgeon and director of the Epidemiology Research Group in Organ Transplantation at Johns Hopkins University in Baltimore. “Millions.”

Mills’ voice might be soft behind her mask, but she’s an outspoken advocate.

She is the founder of the nonprofit Butterfly Walkers, which offers lupus patients one-on-one consultations about resources. Before the virus, Mills lobbied lawmakers in Washington on lupus issues.

However, she has been able to effect change closer to home. After learning that the Whole Foods in Montclair reserved an early-morning shopping hour for seniors during the height of the first wave, she pointed out that those with compromised immune systems were also at risk. The store added them to the 8 a.m. slot.

Before Mills knew it, every Whole Foods store was doing it, she says.

“A lot of times people who are going through chronic illnesses and things, they’re afraid to speak up,” she said. “My little phone call made something happen.”

Mills, who has a master’s degree in biomedical science, has been an adjunct professor at Essex County College since 2012. But she hasn’t taught since December 2019.

“The semester ended and COVID happened,” she said.

In order to return to the classroom, Mills will have to get the vaccine.

Her doctor told her it would be OK to get vaccinated while on the immunosuppressant, but she worries about a potential allergic reaction and side effects.

“My body has just been traumatized over the years and I’m super sensitive, so I don’t know if I will be a candidate,” she said.

She also points to a collective history of medical trauma underlying vaccine hesitancy, “especially for people of color, where they have been betrayed so many times,” she said. “We had the Tuskegee experiment.”

So for now, Mills is holding out, serving as a patient ambassador for Snow Companies, a Virginia marketing firm that works with the pharmaceutical industry.

“I just know I’m not taking this mask off,” she said.

‘It only kills people not like me’

The doctors told Maysoon Zayid’s parents she would never walk. A choreographer told her she would never tap dance on Broadway.

“If there was an oppression Olympics, I would win the gold medal,” the comedian, writer and actor from Cliffside Park said as part of a 2013 TED talk that has been viewed more than 17 million times. “I’m Palestinian. Muslim. I’m female. I’m disabled, and I live in New Jersey.”

But Zayid — who has cerebral palsy, a neurological disorder that impairs movement — launched a career that includes international comedy gigs, a recurring role on a soap opera and an appearance in an Adam Sandler movie.

Then came the pandemic.

After 20 years in the business, Zayid had averaged five gigs a week. By December, she hadn’t performed onstage in nearly a year.

“After nine months of being stuck indoors by yourself, it can’t possibly be good,” she said.

Zayid, who is in her 40s, first ventured into comedy in 2000 as a way to book acting roles. In 2003, she co-founded the New York Arab American Comedy Festival. Along the way, she appeared in 2008′s “You Don’t Mess with the Zohan,” bagged a part on “General Hospital” — she has played attorney Zahra Amir since 2019 — and yes, managed to tap dance on Broadway as part of the Arabs Gone Wild comedy tour in 2010.

Then everything stopped. The coronavirus prevented Zayid from touring and from flying to California to film the soap opera.

“I’m like Tinkerbell,” she said in June 2020. “If I don’t get applause, I fade to black.”

The anguish of it all hit that same month as she watched the Dave Chappelle Netflix special “8:46,” which he filmed outside, near his home in Ohio.

“He said, ‘I haven’t been on stage for 87 days,’” Zayid said. “I started crying because I realized I hadn’t been on stage for 100 days.”

But Zayid then figured out how to make Zoom shows work, assembling a studio in her basement with professional lighting and a pleasant bookshelf background. Soon, she was doing three to five gigs a day, including comedy shows and speaking engagements.

“This is literally the absolute best my career has ever been in my life,” said Zayid, who performed in December for audiences at Washington’s Georgetown University and in Doha, Qatar from her basement.

Giving a socially distanced tour of the space, Zayid — who has long, dark hair and was wearing red sneakers and yoga pants — sat on a blue couch flanked by umbrella lighting. A Ruth Bader Ginsburg action figure peered out from a bookshelf.

Zayid began scheduling socially distanced walks with her mother, Ribhia Abdelhady, a recently retired lab director at Jersey City Medical Center. They wore masks and stayed on opposite sides of the road.

“I joke onstage my mother is highly critical. So now she doesn’t just criticize me. She screams the criticism on the street at me,” said Zayid, breaking into a raspy, cathartic laugh behind a gaiter mask with a kaleidoscopic cat pattern.

“Neither one of us wants to get sick,” said Abdelhady, 74, in December before setting off on a walk with her daughter in Englewood Cliffs.

As Zayid tended to her bustling Zoom business, the outside world was looking more and more inhospitable.

She watched people try to explain away COVID-19 as something that only affects those with underlying conditions. She summed up the sentiment:

“It only kills people who are not like me, so I’m going to be fine.”

Meanwhile, flocks of people descended on airports despite the danger, while she stayed home alone struggling “because I haven’t hugged anyone in months,” she said in December.

In April, she returned to the stage at an outdoor show in New Brunswick. The comedian, who performs while seated, was back on the road with a comedy tour this month, and she’ll start a Princeton University arts fellowship in September.

Zayid will receive her Pfizer booster dose over Labor Day weekend.

But like others, she’s worried about waning accessibility for the disabled. The pandemic turned remote communication into the standard, not an exception. To undo that progress, Zayid says, would be to erase a lifeline.

“I see people that are so excited to get back to normal, get back to like we were before,” she says. “But they’re kind of abandoning the things that made it successful for the disabled community.”

‘It is my business’

People keep running into Bojana Coklyat.

That’s a problem.

Coklyat, who has low vision, uses a red-tipped white cane to walk down bustling Central Avenue near her home in the Jersey City Heights.

She figured the pandemic would at least make people more cautious. But even before vaccines were available — when social distancing was in full effect — she was dismayed to find pedestrians invading her space.

“The cane is about 5 feet, and people are still running into the cane,” Coklyat said in December. “It’s like, ‘People, you’re supposed to say 6 feet away, and you’re not even paying attention?’”

She was diagnosed with Type 1 diabetes when she was 10 and started losing her vision in her 20s because of diabetic retinopathy, damage to blood vessels in the retina caused by high blood sugar. She also experienced kidney failure and was on dialysis for two years before she underwent a kidney and pancreas transplant more than a decade ago.

Coklyat can be quick to laugh, brightening a room with exuberant chuckles. But she slowed for a beat one day in February, sitting in a wheelchair in the lobby of her podiatrist’s office.

She was afraid.

“It’s really freaking exhausting just to go outside,” said Coklyat, who had an anxiety attack the previous day while waiting in a cramped office for her first dose of the Moderna vaccine.

Now that she knows the vaccine may not shield her from COVID-19 due to the immunosuppressive drugs she takes, putting her health in the hands of others is a frightening prospect.

Coklyat, a disability justice activist and artist, works as a project manager at New York’s Museum, Arts and Culture Access Consortium. In her role, she tries to make cultural institutions like museums more accessible for disabled people.

But she isn’t getting on public transit anytime soon.

“People who aren’t high-risk think, ‘Oh, they go back to work, they get the vaccine and things will go back to normal,’” Coklyat said. “Well, what about me? I’m going to be on the PATH train packed like a sardine with who knows how many people who didn’t get vaccinated, or on a packed subway car with people who aren’t wearing their masks … How will that impede my ability to work, to pursue a career?”

Dr. Dorry Segev, the transplant surgeon and co-author of the study in the Journal of the American Medical Association, says Myfortic, the antimetabolite drug Coklyat takes, is known to blunt patients’ immune response to the vaccines. He says a “profoundly high proportion of transplant patients” tested negative for antibodies.

“I’ve heard reports from all over the country of fully vaccinated transplant patients who thought they were fine, went to a family gathering or something and then ended up in the hospital with COVID,” Segev says.

This month, the Food and Drug Administration authorized booster shots — third doses of the Moderna and Pfizer/BioNTech vaccines — for some people with weakened immune systems before allowing all vaccinated Americans to get one.

Coklyat plans to get a booster of the Moderna vaccine as soon as possible.

But some high-risk people may not be protected, even after the extra measure. A follow-up study Segev co-authored in June revealed 16 of 24 transplant recipients who had no COVID-19 antibodies after two doses of vaccine still had none after a third shot.

“They’re still vulnerable,” said Miller, the Saint Barnabas infectious disease doctor. “It’s not like they’re suddenly going to have a super duper immune response for that third dose. It might be better than it has been, but they still have to be careful.”

The uncertainty means Coklyat cannot take any chances, especially as strangers continue to violate her personal space.

“People will just grab you if you have a white cane,” Coklyat said during the second wave. “They’ll just grab you and walk you across the street without even asking you if you need help. And it still happens! I’m like, ‘People, there’s a pandemic.’”

Coklyat’s husband Mike DiFeo, 36, a commercial photographer and adjunct media professor at New Jersey City University, can’t stand when people are careless around her.

“It’s always in the back of my mind — ‘What if I should’ve been more careful?’” he said in December.

Coklyat had grown tired of people neglecting basic precautions long before Segev’s studies.

“When people aren’t wearing masks inside, I yell at them,” she said. “They’re like, ‘Mind your business.’ I’m like, ‘It is my business.’”

It could be her life.

Thank you for relying on us to provide the journalism you can trust. Please consider supporting NJ.com with a subscription.

Amy Kuperinsky may be reached at akuperinsky@njadvancemedia.com and followed at @AmyKup on Twitter.