After living with multiple sclerosis for more than four decades, he is legally blind, has trouble walking and doesn’t use his right side. But Richard Cohen, the award-winning journalist and author, sees the possibility of hope against his incurable disease.
Cohen, who is married to NBC News special correspondent Meredith Vieira, stopped by TODAY Wednesday to talk about his participation in the first-of-its kind stem cell clinical trial, the raw feelings he shares on his blog and a recent health crisis.
Cohen, 66, told Matt Lauer that he had no hesitation about being part of the trial, which involved undergoing an infusion of stem cells extracted from his own body.
“Absolutely none,” he said. “Because I’ve had the illness for over 40 years. I’ve been told for that period of time that there really is nothing for the kind of MS that I have.
“And you know, when you’re in that kind of a situation, the concept of hope doesn’t even go through your mind,” he continued. “Suddenly I realized, maybe, just maybe, there was some kind of hope.”
Unrelated to the trial, though, Cohen had a serious health scare that landed him in a New York hospital in late March. A blood clot had traveled dangerously close to his heart. He said on TODAY he is feeling fine.
“These things happen so fast,” he said. “I mean, a swollen foot, a black toenail and the next thing I know, I’m in the emergency room, and I’m in ICU and they’re telling Meredith that this could go either way and they told her they were bringing me back from the brink.
“I got the vibe, but I wasn’t really told how serious it was,” Cohen said. “And it was very serious.”
Cohen wrote about the hospitalization on his blog, “Journeyman,” in a post called “Crisis.” The blog is where he shares his daily struggles and feelings, expressing humor as well as anger. He has written about being tired of needing other people to help him, and of feeling humiliation.
“I get a very strong reaction from readers who get it and they appreciate the openness,” he said. “I think too many people stay closed and don’t tell the truth.”
Cohen has written about “the unsettling sense of being marginalized by the chronically healthy around us.”
Lauer noted that Cohen has taken to task those who don’t get what is like to live with a chronic illness or disability. Even Vieira has urged him to tone down the anger.
“I’m wrestling with the anger question right now,” Cohen said.
“What bothers me is that I think that people don’t see us,” he added. “We live in a culture of beauty. We live in a culture of physical perfection and people sort of avert their eyes or they look through us.”
Using a wheelchair in airports leaves him feeling invisible.
“I become part of the wheelchair,” he said. “They talk to Meredith about what I want to do because they wouldn’t address a person in the wheelchair. … Give me a chance.”
He said it’s been easy to share his thoughts on the blog after writing his memoir, “Blindsided.”
“That’s where I crossed the river,” he said. “That’s where I really revealed myself.”
Cohen ended the segment by joking that he’ll enjoy having his wife out of the house for a few hours every day as Vieira launches her talk show in September. But on a touching note, he said, “She’s going to do well. Her personality, her warmth, her talent is going to show.”
Lisa A. Flam is a news and lifestyles reporter in New York. Follow her on Twitter.