Maine native hopes to inspire, educate after surviving coma, ‘locked-in syndrome’

Mark Hathaway, survivor of &quotlocked-in syndrome," sits in his Litchfield home in this February 2014 photo.
Robin Clifford Wood | BDN
Mark Hathaway, survivor of "locked-in syndrome," sits in his Litchfield home in this February 2014 photo.
By Robin Clifford Wood, Special to the BDN
Posted Feb. 11, 2014, at 5:27 a.m.

In September 1980, a sudden, devastating illness left 24-year-old Mark Hathaway in a coma for six weeks. After regaining consciousness, Mark spent another six weeks fully aware of his surroundings but unable to move, blink or even breathe for himself. And yet, he’ll tell you how fortunate he feels to have had the experience.

“I read about 10 cases of viral encephalitis in the Midwest that fall,” he said last week at his home in Litchfield. “Nine of them died.”

Mark was the 10th case. He is grateful to have survived, but his gratitude goes far deeper. Mark gained precious insight into the power of human kindness, and he is eager to share his story with as many people as he can.

An eighth generation Mainer from Gardiner, Mark’s journeying began when he was a teenager.

At age 16, he received a scholarship to spend his junior year in Spain. At the time, there were anti-Franco demonstrations in the streets that sometimes became violent. One day, Mark got caught up in a rioting crowd and found himself detained for several hours by the police. That scare did nothing to deter Mark’s excitement for travel. After high school, he took time off to make his way overland from Spain to Nepal.

He returned to the states for college, then went back overseas to Taiwan.

“When I got to Taiwan, I didn’t have the money to get home,” he said. “But I knew I could get work, and I wanted to learn a little Chinese.”

Mark’s travel tales reveal an optimistic attitude and an openness to adventure that became essential elements during his greatest journey, the one that took place entirely within the confines of a hospital bed.

Back in the U.S., Mark was in his first year of business school in Chicago when he was afflicted one evening with a searing headache. It escalated to the point of hospitalization then quickly deteriorated to the point of coma.

When Mark became conscious again six weeks later, his body remained inert in a condition called “locked-in syndrome.” Understandably, he was unsure at first of the reality of what he was experiencing.

The coma state had been a strange world of dream-like unreality. When he awoke, he knew he was in Chicago but could not figure out why his mother was there from Maine, why his girlfriend was there from Montreal, why he had a tracheal tube in his neck, and why he couldn’t move or speak.

“I should have known I was in a hospital, but it didn’t make sense. I thought it was another dream.”

The long, arduous journey back, he says, was a thrilling time. So many tiny things — moving a finger, swallowing, saying “I love you” out loud — all were major triumphs. Though he heard one or two doctors question his survival, Mark never doubted he would recover, get back to grad school and re-enter normal life — all of which he did.

“It wasn’t determination so much as expectation. I didn’t see it as that big a deal,” he said.

Recovery was also essential, in his mind, as a thank you to those who stuck by him. The opportunity to have felt such love and support was priceless to Mark. Part of his motivation to succeed was that he didn’t want to let people down — his friends and family, the hospital staff, the physical therapists, nor the many others who supported him.

For 30 years, since that time, Mark has wished he had some way to share the gift of that experience. He wrote a book about it soon after his initial recovery, thinking it would just be for family. But last year, he got it published: “World Locked In: Six Weeks in Coma and Beyond.”

Some residual neurologic damage requires that Mark walk with a cane. At first when people opened doors for him, he didn’t like it; he resisted their help. Over time, he came to realize that when people offer help, they are choosing kindness, not unlike the profound kindness that carried him through his illness. He feels this so deeply that he struggled with his emotions as he tried to explain.

“Hey,” he said, “They want to do this. I get to see them at their best. They open the door for me, and through that little connection — it may be only 15 or 20 seconds long — I get good will from them, they get good will from me; they feel good about themselves.”

Mark’s book is only one piece of his newest journey. He wants to take his story on the road, speak to groups at hospitals, schools and libraries. He wants, primarily, to pass on the gift of insight that he received.

“What I tried to do was to relate my story to everyone else. Everyone has ups and downs in this life. My story was not that bad. I know it’s hard to believe, but I feel lucky,” he said.

To reach Mark Hathaway about speaking engagements, email mghath@live.com, call 592-3466, or visit worldlockedin.com.

Robin Clifford Wood welcomes feedback at robin.everyday@gmail.com.

 

http://bangordailynews.com/2014/02/11/living/maine-native-hopes-to-inspire-educate-after-surviving-coma-locked-in-syndrome/ printed on December 25, 2014