The ABCs of courage

March 22, 2002

A paralyzed young man and his parents find a way to communicate--and triumph.

 

The ABCs of courage

A paralyzed young man and his parents find a way to communicate—and triumph.

By Noah Gilson, MD
Neurologist/West Long Branch, NJ

The wheelchair-bound young man was pushed to the lectern and situated so his face was just inches from the microphone. From where I sat in the bleachers of the football stadium, next to his parents, I could tell that my patient's face was still partially paralyzed. It showed no expression as he spoke in a soft, thin voice, catching his breath after every few words.

But while body and voice were weak, Mark Orsini, co-valedictorian of Red Bank Regional High School in Little Silver, NJ, delivered a powerful commencement address at his graduation. He told a tearful audience about the enduring strength of friendship, and how one of his own friends had typed his speech. Quoting from a Dr. Seuss book, Oh, The Places You'll Go!, Mark expressed his best wishes for everyone:

You have brains in your head.
You have feet in your shoes.
You can steer yourself
Any direction you choose.

He received a standing ovation, a bouquet of flowers, and an outpouring of love from his fellow students who, just weeks earlier, had visited him in the hospital wondering if he would be alive the next day.

A sore throat turns life-threatening

As Mark's doctor, I once had my doubts, too. This 18-year-old had developed Guillain-Barré syndrome; almost completely paralyzed, he was in the full grip of the disease just two days after coming down with a sore throat.

Before the syndrome set in, Mark had everything going for him. The president of his senior class and an Eagle Scout, he was bright, personable, and ambitious. In the fall, he was going to Dartmouth in premed.

But, when I first met him late in his senior year, he was lying in an intensive care unit. He could nod his head up and down; otherwise, he was immobile.

Most people recover completely from Guillain-Barré syndrome; Mark looked as if he might not survive. His temperature and blood pressure fluctuated wildly, and his heart rate once plateaued at 160 for almost an entire day. Mark's ability to breathe was becoming questionable as the illness rapidly affected the diaphragm. His parents and I decided to place him on a ventilator.

The tragedy of the situation moved everyone who took care of Mark. "Can you believe it?" a battle-hardened ICU nurse asked me. "Why does something like this happen to such a nice family?" I didn't have any answers. A distinct cloud of depression settled on the unit.

The only ones who didn't appear depressed were two unlikely people—Armando and Elizabeth Orsini, Mark's parents. They were privy to information that the rest of us lacked: They knew their son.

"Mark is a fighter," said his father. "He's very persistent and very motivated to succeed. This Guillain-Barré thing is just one more challenge for him."

"He'll be very active in battling his illness," added his mother, "provided that he knows what's going on."

Can't speak, can't move–but that doesn't stop Mark

But how was Mark going to ask questions, or state his preferences about the course of his care? Besides being unable to speak, Mark couldn't even point to a phrase or letter board that incapacitated patients often rely on to communicate with others.

The solution to this problem was one of the most remarkable things I've ever witnessed. The Orsinis would sit at Mark's bedside and slowly recite the alphabet. When they'd come to the particular letter that Mark needed to spell a word, Mark nodded "yes," and they'd write it down. Then they'd recite the alphabet again, and wait for Mark to nod when he heard the next letter he wanted. And on it went, letter after letter, A, B, C, D, E, F, G . . .

Asking or answering a single question might take Mark 15 or 20 minutes. But his parents were willing to put in all the hours needed for their conversations. They took turns staying in their son's hospital room. He was never alone.

Mark had a lot to say with his head-nodding. He posed the kind of questions that you'd expect from someone blindsided by a devastating disease. "How did I get this? Am I going to get better?" He made the usual requests of a hospitalized patient: "I need something to sleep. My butt is hurting—turn me more." Sometimes he just wanted to chat, or crack a joke.

What stood out in these exchanges, though, was Mark's total involvement in the decision-making about his treatment. When we told him about the possibility of a feeding tube, for example, Mark asked, "What are the other options?"

"We can feed you through your veins," I replied, "but nutrition through the GI tract is always preferable."

"I need to think about it," he replied, nodding off the letters. "I will let you know tomorrow."

The next morning, he told us that he'd go with the tube. All major decisions were made this way.

Would a risky treatment save the day?

While he was preoccupied with his medical condition, Mark hadn't forgotten about the commencement address that he was supposed to deliver as the class co-valedictorian. As far as he was concerned, he was going to keep the date.

"I have already written it," he told us one day. "I want to be there to give it."

His intentions struck me as an unrealistic fantasy. After 10 days in the hospital, Mark wasn't improving, and graduation was only a month away. But I wasn't going to undermine his indomitable spirit.

"If you promise to be there," I replied, "then I'll be there, too."

Two courses of intravenous immunoglobulin—the standard therapy—had not gotten Mark out of bed, though. So, after calling several Guillain-Barré specialists around the country, we proposed an effective, but somewhat risky procedure called plasma exchange. We would remove Mark's blood, filter out the red and white cells, and then reinfuse them back into Mark minus the old plasma. This technique brings relief apparently because the plasma contains antibodies that attack a patient's nerves.

The patient weighed his options.

"What are the risks?" he asked.

"The risk of death is small, but it's definite," I replied.

With his usual deliberation, Mark said he'd give us a decision the next day. And he did.

"I want it," he announced. "I'm not getting any better."

The week following the plasma exchange treatments brought with it subtle, but definite signs of improvement. We weren't sure what this augured, but Mark was certain. Letter by letter, he informed us that he would definitely attend his graduation. "Bring me my speech," he said. "I want to touch it up."

Before long, Mark made believers out of all of us. One day, a physical therapist stopped me in the hallway and said, "Maybe I'm imagining things, but I think Mark is moving his toes a little."

She wasn't imagining anything. After his toes came his legs, and then his arms. He couldn't speak or point to a letter board yet, so his parents still had to recite the alphabet and record his nods. But, as always, the Orsinis weren't complaining. They cheerfully continued to serve as his voice.

Gloom began to lift from the ICU as the physical therapists reported that Mark was able to do more and more on a daily basis. His respiratory muscles were also making a comeback. Finally, three weeks into his illness, the magical day arrived when we could remove his breathing tube. We were able to hear his voice for the first time in almost a month.

"Hi," he said.

The hospital staff and I thought this moment would be more dramatic than it actually was. Then we realized why it wasn't. Mark had been speaking to us all along.

Mark has continued to make steady progress since his triumphant commencement speech. He's at Dartmouth now. I hope he follows through with his plan to become a physician. I think he'll make a great one, given his intellect, idealism, and persistence. His ordeal with Guillain-Barré syndrome will no doubt deepen his empathy for what patients experience.

I saw him in my office the other day when he was home on vacation. Other than slightly decreased reflexes in his arms, his neurological exam was normal. "I get a little tired at times," he said, "but otherwise I feel great."

There was a lot left unsaid during that follow-up visit. I wanted to say that I was in awe of him and his raw courage. I wanted to say that he and his parents were some of the most amazing people I'd ever met.

I wanted to tell him of my new feelings of shame when one of my three children tried to talk to me and I brushed them off because I didn't have the time to listen. I wanted to say that I felt this way because in my mind's eye, I saw his parents sitting by his hospital bed, hour after hour, patiently listening to their child speak, letter by letter.

I wanted to say that I would never forget him or his parents, that I felt blessed to have known them all.

But sadly, words failed me.

 

Noah Gilson. The ABCs of courage. Medical Economics 2002;6:63.