Published March 18th, 2020 at 1:34 PM
The nurse casually offered the alarming news as she changed the bandaged bedsore on the backside of Alvin Sykes.
Bedsores are among the indignities that Sykes, a Kansas City-area civil rights legend, has endured during the past year after a fall left him partially paralyzed.
The medical odyssey – losing a foot to gangrene, the rigidity of his fingers that keep him from holding a pen to write, his inability to stand, let alone walk – pale next to the heightened threat he heard in the nurse’s words.
She told him that she’d also tended to the first person who had died from the new coronavirus (COVID-19) in Kansas. She shared the information as she worked on his wound.
Sykes has lived for months – flat on his back in a bed – at Life Care Center of Kansas City. It’s the same Kansas City, Kansas skilled nursing center where the man who died had also lived, but in another wing.
That man, in his 70s, was rushed to a nearby hospital on March 10 with cardiac symptoms and a fever. He died the following day. Post-mortem testing found what state officials announced in a press conference. The man carried the coronavirus.
The nurse said she’d been tested and was found to be negative for the virus, Sykes said. He hasn’t seen her in recent days.
The additional information was hardly comforting. In the days after the man’s death, aides initially came into the room without face masks, drawing pointed questions about protocol from Sykes.
A corporate spokesman, according to Sykes, visited on Tuesday, and argued against Sykes’ insistence that staff wear face masks around him. But staff are complying with the demands.
“I tried to press the mental health perspective,” Sykes said. “The unnecessary anxiety because you have some staffer standing over you without a mask.”
Phone calls to the center’s executive director were redirected to a corporate spokesperson and were not returned.
Separately, the nursing home released a statement saying it had received 89 tests and on Friday and Saturday of last week, 30 of their 65 residents were tested, along with 59 staff members.
“So far, we have gotten results back on six residents and 32 staff members,” the company said in the statement released on Monday. “All results have been negative. At this point, no one, resident or staff member, in our building has tested positive for COVID-19.”
As the number of local cases of COVID-19 grow, Sykes continues to be acutely aware of his vulnerable health.
“I’m over 60, have underlying health conditions and respiratory issues,” Sykes, 63, said. “If I were to get it (the coronavirus), it probably would take me out.”
He’s worried. For himself, yes. But his social justice mindset has also geared up with concern for the fate of others in the center, which has received “much below average” ratings from state inspectors.
There’s more. Because he watches CNN almost 24/7 in his room, Sykes has known for weeks that his center is part of Life Care Centers of America, a network of long-term nursing and rehabilitation facilities across the nation. The company owns and operates the Kirkland, Washington nursing home where the death toll associated with the coronavirus has reached 29. And dozens more with ties to that center have tested positive.
Sykes has battled injustice his entire adult life.
He’s been integral with reopening, solving or shining a light on infamous civil rights cases. He’s the impetus behind a unit within the U.S. Department of Justice that charged the Federal Bureau of Investigation with reopening unsolved civil rights era murders, seeking closure before remaining witnesses and perpetrators died.
Federal legislation creating the unit was named after one of his most storied accomplishments – the reopening of the 1955 Emmett Till case.
His advocacy has testified to his superior intellect, honed by hours spent in public libraries combing law books. Sykes never graduated from high school and spent some of his youth at Boys Town near Omaha. He was born to a teenage mother and was raised by another woman who took him in as her own.
Sykes has met with virtually every U.S. Attorney General in recent decades. He’s well-known to many U.S. Senators and Representatives, along with career justice professionals.
His access surprises some, considering that he’s led a relatively paltry lifestyle, never deriving much income.
Financial insecurity has been an issue in his care. Apparently, dignity doesn’t come cheap.
“Unconscionable,” is how Ajamu Webster, CEO and founder of DuBois Consultants, terms the treatment that Sykes has received at a variety of facilities.
Webster, a Kansas City engineer, has power of attorney over Sykes’ affairs.
Sykes awaits an April appointment to assess the extent of his spinal injury, which has been labeled a contusion. The hope is that he will gain admittance to a rehabilitation program affiliated with the University of Kansas Medical Center.
Another advocate is Virginia Sewing, a retired nurse. She’s visited him twice weekly, tracing his admittance to every new center.
Last year, Sewing returned from being out of town to find that Sykes had been taken from a Topeka care center and was at Stormont Vail Hospital.
Sewing was told that he might have had a stroke. But when she saw him in the emergency room, his symptoms didn’t fit the diagnosis. For one thing, his stomach was distended.
The bed sores, called pressure ulcers, are painful if his bed pillows are not regularly adjusted. At Life Care, they have vastly improved, Sewing said.
His right foot, the one that was amputated, didn’t really hurt, it was numb. Sykes first thought that he’d only need an operation to peel away the deteriorating tissue. But eventually, he was told the damage was so extreme, it had eaten away at his bone. In late January, his foot was amputated.
A recent appointment to fit him with a prosthetic was derailed when Sykes was questioned about his ability to walk.
He didn’t have a reply because getting him upright, even attempting such a move, hasn’t been tried. He can move his legs some and wiggle the toes he has left.
But if he can’t regain the strength to walk, Sykes fears that Medicaid might not pay for the prosthetic.
He hasn’t seen what he refers to as the “stump.” He can lift his head, but he can’t sit up enough to see his lower extremities.
Webster has been a regular agitator to Life Care staff, questioning the lack of therapy and other decision-making, including in recent days.
He wanted Sykes to be tested for the virus faster. It hadn’t happened as of Wednesday morning. Sykes said he’d been told that staff and people living on the wing where the deceased man resided would be first.
“I feel terrible for the people who can’t advocate for themselves, because of their conditions and also for folks who are likely intimidated by that process,” Webster said. “Alvin isn’t any of those things. He can advocate for himself and he still can’t get adequate care.”
A statement from the center noted that “every associate is also screened when they arrive for work, including checking temperature, to ensure no additional sickness is brought into our building. If they have a fever over 100.4, we send them home and ask (that) they contact their personal physician.”
Sykes has not been isolated and he doesn’t believe that he ever came in contact with the man who died. Still, his temperature rose to 99.5 over the weekend, before dropping back down to normal levels. He thinks stress played a role.
The care center remains closed to visitors. Sykes said that other changes include all residents taking meals in their rooms. No one is allowed to dine in the cafeteria.
Helpful aides assist Sykes with his cell phone. He balances it on his chest, using his left index finger, the digit that is perpetually pointing, to keep the phone from slipping.
The process allowed him to first learn of the man’s death. Not from officials in the center, but from state Sen. David Haley. Haley’s among the core group of friends deeply worried about Sykes.
A reporter had called Haley for comment the day the former resident’s positive COVID-19 test was announced, as the Life Care Center is in his district.
Haley drove as fast as he could, knowing that Sykes lived there too. Signs on the doors marked it restricted access only.
On March 16, 2019, Sykes had a train to catch.
His suitcase was packed, his light brown suit coat had been placed on a hanger to carry. In his rush to board the Amtrak to Chicago, he fell headfirst over a metal bench.
Sykes has limited vision in his right eye.
He remembers a woman, possibly a pediatrician, hovering over him and assessing his injuries.
He asked her twice if she could put his legs down. She told him they were down. He was rushed to Truman Medical Centers.
Sykes had been headed to Chicago to attend the 80th birthday celebration of the Rev. Wheeler Parker, Jr. Parker is the sole living witness to the kidnapping and subsequent murder of Emmett Till.
Till, 14, was Parker’s younger cousin.
The 1955 murder marked the abject disregard for African American lives that then coded life in southern states.
His lynching was captured in a black and white portrait of him laid out in a coffin, his face horrendously disfigured. An eye had dangled when his body was pulled from the Tallahatchie River. His head was caved in either by an ax or gunshot, a cotton gin fan had been tied to his neck with barbed wire.
His murderers assumed the body would never be found, Parker said.
Two white men were charged, but quickly acquitted. They later bragged about committing the murder in a magazine article, arrogant with the knowledge that double jeopardy would spare them from prison.
Sykes got the case reinvestigated, including having Till’s body exhumed.
The attention meant everything to the family.
“Alvin is a jewel,” Parker said. “He is so unpretentious. He just wants to get the job done for justice.”
The assessment rings true. Even now.
Sykes has continued to advocate for legislation and social justice issues from his many hospital beds.
There was the Kansas DNA bill, pushed through by Haley, that ensures testing results apply to closed cases. It’s expected to be an added tool in overturning wrongful convictions.
Another, in Missouri, focused on eliminating the statute of limitations for some childhood sexual assaults. The law’s impetus stemmed from abuse suffered by Sykes. His attackers were two people who lived across the street from his boyhood home.
It’s a deeply painful portion of his youth. But through the years, the trauma has become one of the wellsprings from which his sense of justice continues to emanate.
He’s been a Buddhist for years, adopting the faith after becoming friends with the musician Herbie Hancock, who also practices.
Confidants have long noted that although he’s doggedly persistent, Sykes might best be described as contemplative.
His thoughts a few days before the amputation of his foot, serve as an example.
“What I’ve been thinking more is all the places that I’ve walked and knowing that the journey was on that foot,” he said.
Speak with Sykes for more than a few minutes – especially now – and he’s bound to make a reference to his unfinished autobiography. The title will be “Show Me Justice: The Happy Life Journey of Alvin Page Sykes.”
“Even this past year has been a happy journey,” he said. “It’s been a challenge. And even if I don’t ever walk again, I will work to achieve my mission. Yeah, I’m happy.”
Flatland contributor Mary Sanchez is a Kansas City-based writer.