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Despite his ‘locked-in syndrome,’ he affirms ‘God wants to use me’

ANDERSON, Ind. (BP)–If you were to see them somewhere in public, you would notice the wheelchair first. Ed sits in it. Until recently, he wore a strap attached to a headrest and circling his forehead. The strap helped him keep his head up.
Robin pushes the chair. She also carries Libby, who just turned 1 year old. Brady, 5, walks beside his mom. Dru, 2, is perched on Daddy’s lap. Ed holds Dru in place with his left arm. Ed’s right hand remains at his waist, never moving.
If you greet Ed, the eyes behind his glasses may not find yours before you walk on. He won’t be able to speak to you. If he moves at all, it will likely be to raise his left hand a few inches and then drop it again. You may think he’s mentally challenged.
He’s not. And Ed Witham wants you to know: he’s in there.
As a result of a nearly fatal accident, Ed suffers from a very rare neuromuscular disorder called “locked-in syndrome.” He can hear and understand, think and feel. But only with tremendous effort can he express even a little of what’s going on inside. For 14 years, his mind and emotions have been trapped in a body that won’t cooperate.
Yet Ed knows God has a purpose for his life. His wife is committed to helping him fulfill that purpose. The couple are members of Kingston Avenue Baptist in Anderson, Ind., where Robin serves as pianist. This is their story.
It wasn’t yet noon on Saturday, April 9, 1983. Robin Livesay was worried. Her fiance, Ed Witham, was supposed to have picked her up at 11. Robin and Ed had been engaged for six months. Robin still lived with her parents in New Castle, Ind., while attending college and working part time. Fresh out of basic training, Ed was in the U.S. Army, serving at Fort Knox. He was home for a family weekend.
Robin’s phone rang. It was Ed’s brother. “Ed’s been in an accident,” he said. At a railroad crossing with a broken signal, Ed’s car had hit and flipped over the top of a train.
Robin stayed with Ed in an Indianapolis hospital during the next critical hours. While he lay comatose, she prayed fervently he would not die.
God answered her plea, and Ed survived. But when he regained consciousness, he couldn’t talk; he couldn’t move. One doctor told Robin, “He’s a vegetable. His brain is totally wiped out.”
Robin countered, “Then why is his EEG normal?”
Taken aback, the doctor said, “His EEG is normal?” Leaving the room, he later returned with a different story. Robin jotted his comments in a little notebook Ed’s mother kept for his visitors to sign:
“Today Dr. S said he knew you could hear and totally comprehend what everyone said to you. He said you’re experiencing what is called ‘locked-in syndrome.’ You hear & understand but you just can’t make yourself respond yet.
“You tried so hard to pick up your hand today. So that is a positive sign that you are trying to move. Dr. S also said he wanted only positive actions & thoughts around you. He said what you needed is your family to be with you as much as possible and to show you lots of love & affection. But we knew that, didn’t we?”
Robin concluded her notebook entry, “I love you Ed Witham.”
Ed lay hospitalized for six months. Robin visited him almost every day. Finally, two days before Thanksgiving, Ed came home. Soon after, he and Robin found a way to communicate. “Ed, can you squeeze my hand?” Robin asked. He squeezed it.
Now, when Ed is ready to talk, Robin starts saying the alphabet. When she gets to the first letter of the first word Ed wants her to know, he squeezes her hand. Remembering that letter, she starts down the alphabet again, stopping again when he squeezes her hand.
If she thinks an upcoming letter is a vowel, she runs through “a-e-i-o-u” instead of the whole alphabet. If she thinks she knows the rest of a word or sentence, she says it, and Ed lets her know whether her guess is correct. To say “yes,” he gives one squeeze or raises his left hand one time. To say “no,” he gives two squeezes or lifts his hand twice.
“You don’t think he’s smart?” she asks. “Sometimes I get confused, but he can always remember exactly where he is in spelling out a long, complicated sentence.” Ed and Robin were engaged for six years. During that time, Robin earned a degree in clinical psychology and started pharmacy school. Ever so slightly, ever so slowly, Ed improved.
Still, he was unable to talk and, for all practical purposes, unable to move when Robin came home one day and told her parents, “Ed and I are getting married. I’ve already ordered my dress.”
Robin’s mother, Elizabeth Livesay, admits, “I was torn all to pieces. But Robin told me all the time, ‘Mother, I cannot walk away from him.'”
July 29, 1989, Robin Livesay and Ed Witham had a church wedding. A judge performed the ceremony. Seven years earlier, when that judge was a lawyer, Ed was caught committing a misdemeanor. Asked to defend Ed, the lawyer also witnessed to the confused teen and led him to the Lord.
One Sunday morning, the congregation of Kingston Avenue church was singing an invitation hymn. Robin was playing the piano. Ed prodded someone to wheel his chair to the front of the church. With Robin translating, he told the congregation, “I believe God wants to use me. I don’t know how.” Ed deeply desires to recover to the point he can tell others what the Lord has taught him during these still, silent years. He’d love to work with youth. He’d like to write.
The tasks he can manage at present are much simpler ones — but they’re giant steps from where he was a decade ago.
“He helps me get him dressed in the morning,” Robin says. “If I give him a towel, he can help dry himself off. He can hold the kids — that’s a big help. He can move himself around in his wheelchair. He can write his name if he has to, but he must do it left-handed.”
Twice a week, a speech therapist comes to the Witham home to help Ed practice sound and motor movements of the mouth. A couple from South Africa was giving Ed physical therapy each week until the company that employed them stopped allowing home visits. Aware of how much the workouts have helped Ed’s posture and muscle control, Robin is now searching for another physical therapist.
“We don’t yet have the happy-ever-after ending,” Robin says. But the couple does have three beautiful children and a deep commitment to God and each other. People who know them see that the Lord is already using them.
“Ed and Robin have been a blessing to me and a real encouragement and boost to my faith to see that God’s grace is sufficient to overcome adversity,” says their pastor, Brad Smith. “It’s been a pure joy to build a relationship with them.” For now, Ed Witham is living an imprisoned life. But through that life, God’s grace is flowing freely.

    About the Author

  • Deborah P. Brunt