Usually, they cry.
Because losing a limb is not subtle, not a hidden loss, like losing a kidney. You see what is missing. Everybody does. A part of you is gone and never coming back. The absence affects your daily life — how you stand, walk, sit, if a lower limb. Or every time you reach for a cup of coffee or scratch your nose, if a hand.
About 2 million Americans live with limb loss, with another 3 million born missing an extremity. About 500 people in this country lose a hand or foot, an arm or leg every day, most to vascular conditions, such as diabetes. The rest to trauma, particularly car and motorcycle accidents.
Last year Karl Fisher, a Zion medical van driver, lost both legs at the knee. He was 6 feet 7 inches before.
“Now I’m 4 feet tall,” he said.
Fisher wept when he learned what would happen. He also cried when he met the man waiting outside his room one afternoon on the 20th floor of the sun-filled Shirley Ryan AbilityLab in Downtown Chicago.
L. Bradley Schwartz, a Glenview lawyer, has visited 50 or so new amputees, to share his experience. He knows their concerns — am I still me? When can I get back to living my life?
You can consider him a volunteer, though he doesn’t see himself as having much choice.
“I can’t ignore people that have been through this,” he explained.
Schwartz is what Shirley Ryan AbilityLab calls a “peer mentor.”
“A peer mentor provides their support, their insight, their lived experience to someone who’s going through what Brad has gone through, to provide that insight so they can live successfully out in the community,” said Cristina M. Mix, peer mentor coordinator at Shirley Ryan.
And what has Brad Schwartz gone through? A medical nightmare almost beyond description.
A terrible headache
Mother’s Day weekend in 2004 was gorgeous. Schwartz, then 37, was at home in Glenview on Saturday, celebrating with his wife Katy, son Ben, then 7, and daughter Sophie, 5. Schwartz got a terrible headache.
“I knew something was seriously wrong,” he said. So wrong that Schwartz, a personal injury defense lawyer who studied emergency room mess-ups for a living, took an ambulance to the hospital.
“My experience is, if you go to the ER, you’re going to wait,” he said. “If you take an ambulance, you get right in.”
But wait he did.
“Blood was drawn, but it was drawn late,” he said. “Not even my throat was looked at. I was in incredible amount of pain, getting worse and worse.”
Nine hours later, he went into septic shock. Meningococcal meningitis. His organs began shutting down. The choice he was given was this: go to Endeavor Health Evanston Hospital now, perhaps dying along the way, to make use of their advanced dialysis equipment. Or stay at Endeavor Health Glenbrook Hospital and most likely die within the next several hours.
He went.
The last thing Schwartz remembers is being delirious, screaming “What’s going on?” as they wheeled him into Evanston’s intensive care unit and began to intubate him.
What was going on, in Schwartz’s later description, was “a cascade of horrible things,” including the medical staff falling under the impression he had refused the antibiotics he desperately needed. He hadn’t.
He woke up from a medically induced coma three weeks later, blind in his right eye, with doctors preparing to amputate his blackened, necrotic hands and feet.
How does a person take that news?
“I was in complete tears,” remembers Schwartz. “The thing I was most fearful of was, they’re going to take these limbs off, I’m so scared what my kids would see and feel.”
Schwartz wouldn’t get out of the hospital until November, with his left arm amputated at the elbow, his right at the wrist, and both legs mid-calf. Actually, that is an oversimplification — he had 24 separate amputations; each time, the doctors carving off a little more, trying to get ahead of the dying tissue. Each time, failing and having to go back for more.
Schwartz sued Endeavor Health Evanston and Endeavor Health Glenbrook hospitals, and settled for $11 million, which, after lawyer’s fees, became $8 million. Which might sound like a lot of money until you ask yourself if you’d trade your hands and feet for it. The money eased his practical concerns but didn’t solve the problem of what to do with the rest of his life.
“It took a couple of years to figure out what I was going to do,” he said.
Endeavor Health, which operates both hospitals, declined to comment on the case, citing privacy restrictions.
Amputations skew along racial lines
Amputations are more rare at the suburban hospitals that Endeavor runs. In the city, not so much. Amputation skews along racial lines because access to health care skews along racial lines. Black Americans like Karl Fisher are four times more likely than white Americans to lose a limb. The reason why is no medical mystery: lower quality medical care. Fewer resources to encourage healthy lifestyles. More untreated hypertension and diabetes. And perhaps an unconscious absorption of the values of a society that assigns less worth to their lives.
Which might hint at why Fisher can’t explain precisely how he lost his legs.
“My health was excellent,” he says. “No diseases. I scratched my leg. I immediately put some peroxide on it and went about my business. It gradually started getting infected. More and more and more.”
So how did that affect his other leg?
“You got me,” he said. “I don’t understand. It went from one leg to another.”
What he does know for certain is that Brad Schwartz helped illuminate a path to the future. Fisher said when he met Schwartz, he thought: “I can do this — look at him. Wow, we still have a life. It doesn’t stop here.”
After a month in Shirley Ryan, Fisher returned to Zion. Schwartz met him again there.
“It’s important because the guy is living by himself,” Schwartz said. “He has no legs and can’t get prosthetics for months — he’s going through limb changes. He has a couple more minor amputations.”
Fisher worked as a medical driver, and plans to do that again, using a van fitted with hand controls.
“I still have a life,” he said. “It won’t be like it was. But this is me now, this is Karl. I’m not giving up.”
Some amputees are in denial
That said, it’ll be months before Fisher can even be fitted for artificial legs. His body isn’t ready.
“Karl spent a lot of time without therapy,” said Nick Woeckel, who works at Shirley Ryan as a CPO, a certified prosthetist orthotist — someone who makes artificial limbs. “Your residual limbs need to heal.”
Woeckel says it is not uncommon to meet patients who won’t — or can’t — talk about their conditions.
“Some folks are in denial, not recognizing their current situation yet,” he said. “Certain folks are very talkative, very engaged.”
His patients tend to break down, 50/50, between those most concerned with how their artificial limbs look, and how they function.
“A lot of people still value that aesthetic, naturalized look,” Woeckel said, explaining that, for instance, foam is used to approximate calves. “A lot of folks are private people who want to feel their limb has been restored, and in public want that to be as normal and natural-looking as possible. Certain folks want to show off the [metal] composite — they think it’s a cool, edgy look.”
Schwartz has a metal hook on his left hand, the same one he got more than 20 years ago, and nothing at all on his right. What about the fancy bionic limbs always being shown off online?
“I’ve tried the high tech,” said Schwartz. “It’s not that fantastic. They don’t work.”
‘Like being a prisoner’
But Schwartz does work. The idea of taking his settlement and retiring to some beach was never an option. At first he tried to go back to personal injury law, but he felt his disability distracted juries from the cases in front of them.
He kept returning to his own experience — after six months in the hospital, he had been terrified to leave.
“I was scared to death of going home and having to impose all this stuff on my family. It was almost like being a prisoner.”
With that in mind, he founded Greater National Advocates, an organization helping patients transition back into life, addressing not only their physical challenges, but navigating health insurance and connecting people such as himself whose conditions may have been worsened by malpractice to legal aid.
He’s 59, and his medical odyssey is not over. He was recently diagnosed with brain cancer. But that’s another story.
Shirley Ryan AbilityLab reaches out regularly.
“They call me when they find somebody I should meet with,” he said. “I love it. I like to stay in touch with these people. I will tell these folks: I will walk you through whatever you need.”
One of his key pieces of advice is patience. People want to get back to their old lives now. That won’t happen.
“I say, ‘Whatever they tell you, nod your head and agree, but you need to double the time frame everybody gives you.”
The bottom line, Schwartz tells them, is this: you are not alone.
“Do you have any idea how many people have gone through this?” he says, sometimes.
Other times, he says nothing at all.
“I let ’em cry,” Schwartz explains. “You gotta let it out. You can’t hold it in.”