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Saying what she is feeling

Psychotherapist and researcher pushes on with a last book as speech, mobility - and her body - are taken over by ALS

(Aram Boghosian for The Boston Globe)
By Bella English
Globe Staff / July 5, 2011

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You hear Leigh McCullough’s words before you see her. “Welcome! I cannot smile easily but do not think that I am not glad to see you! I have been ill on top of the ALS so I am weak [so] that my interview may be less than scintillating!’’

They are her words, which she has painstakingly composed on a computer screen by moving her eyes, letter by letter. The computer can then print them out and even “speak’’ them for her. With the help of groundbreaking technology, McCullough, 66, who is paralyzed and bedridden, manages to type, not with her fingers, but with her eyes.

It’s tough enough to communicate a sentence or two to a visitor, but McCullough’s aim is much more ambitious than that. The internationally renowned Harvard researcher and professor is racing the clock to complete her final book, “Forbidden Feelings,’’ on the appropriate use of emotions. Though she has published widely and written two textbooks, this is the book she has always wanted to write for the general public. She refers to it as her “Oprah book,’’ and she first began work on it 25 years ago.

Late last spring, McCullough began having trouble walking steadily and speaking clearly. She researched her symptoms. Doctors couldn’t tell her what was wrong. At the end of June, when she arrived in San Francisco to address an international meeting of the Society for Psychotherapy Research, she found she could not do it. Her students delivered it for her. Soon, a diagnosis confirmed what she had felt in her gut: ALS, or amyotrophic lateral sclerosis, often referred to as Lou Gehrig’s disease. There is no cure for the fatal, neurodegenerative condition.

“She has a beastly, vicious, fast version of ALS,’’ says her husband, John Boettiger, a psychologist. They live in Dedham, where McCullough had a private practice. She is associate clinical professor in the department of psychiatry at Harvard Medical School and co-director of the psychotherapy research program at Harvard’s Beth Israel Deaconness Medical Center. The couple owns a bed-and-breakfast on Cape Cod, which McCullough redid with a lot of her own sweat equity.

Since November, she has been hospitalized. Within a few months of diagnosis, she lost the use of her arms and legs. Her lungs failed, and she was put on a respirator. She has lost the ability to swallow and is on a feeding tube. She cannot talk or move.

But inside, her friends and relatives say, she is still the same person: brainy and warm. “Her mind is very active and keeps her busy,’’ says her daughter, Kelly, an artist in Providence. “The book keeps her very occupied.’’ McCullough also has a son who lives in Denver.

The daughter of a General Electric engineer and a homemaker, McCullough moved several times with her father’s job transfers. Born in Texas, she spent the first five years of her life with her grandparents in Water Valley, Miss. In middle school, she moved with her parents to Binghamton, N.Y. She finished high school in Needham and went off to Wheaton College in Norton, then earned a doctorate in psychology at Boston College.

From her hospital bed, she uses Tobii, a Swedish eye-tracking program that provides a computer screen but substitutes eye movements for a mouse and keyboard. The corneal-reflection technology makes it possible for the computer to pinpoint exactly where the user is looking, enabling her to “point’’ and select letters or icons and scroll the screen.

Two former students have been helping McCullough with her book, but the words are hers. Kristin Osborn is co-director of McCullough’s psychotherapy research program and has a private practice in Cambridge and in Concord. She often visits McCullough in Spaulding Rehabilitation Hospital in Cambridge. She and Amelia Romanowsky, who has a psycho-therapy practice in New Jersey, are looking for a publisher.

“Leigh is one of the most courageous people I know,’’ says Osborn, during a recent visit. “She has taken this on as she’s taken on anything in her life, with a lot of dignity, thoughtfulness, and courage.’’

Indeed, a month after her diagnosis, McCullough sent an e-mail to loved ones with the subject: “This Person Is Not Ready for a Wheelchair!’’ Attached was a video snippet of her in exercise class. “I am building motor neurons everyday. Use it or lose it is never more true than with ALS! My voice isn’t perfectly normal but it continues to be fairly fluent - and I sing a lot while walking up and down hills, to build it up. So overall, things are going pretty well.’’

Ten months later, her hospital room offers hints of her life: photos of friends and family and a “Get to Know Me’’ poster that reveals her favorite music is classical, her favorite sport swimming, favorite color blue, and favorite activity thinking. A wall plaque declares: “What lies behind us and what lies before us are small matters compared to what lies within us.’’ There are a number of balloons, including a “Happy Mother’s Day’’ balloon that has begun to deflate.

Kelly McCullough calls her mother a “force of nature’’ and says she is inspired by her courage and strength. “She feels like she’s lived a very full life and would love to have more of it but she’s very accepting,’’ she says.

In her hospital bed, McCullough is a small, gray-haired presence, her mouth frozen open, tubes everywhere. An attendant from time to time dabs at her nose, or her eyes. Though her globe-trotting life may have shrunk to this one room, she, like others who have ALS, retains her keen intellect, and her mind can still take her to places she has been, or wants to go.

Her bio on her website (www.leighmccullough.com), written before she became ill, says she loves to read, garden, hike in Norwegian woods, lie on beaches in the Mediterranean, and sip wine in Provence, “but she loves most of all what Italians call ‘Il dolce far niente,’ the sweetness of doing absolutely nothing.’’

McCullough’s research over the decades has been a valuable tool in helping her find her way through the thicket of her illness. It centers on affect phobia or how some people fear their emotions. Boys, for instance, are told not to cry and so often lack that particular skill, which is vital to expressing feelings, comforting one’s self, and being comforted.

McCullough’s texts, videos, and lectures are aimed at training psychotherapists how to best work with those who have affect phobia. She is also research director of Modum Bad Psychiatric Center in Vikersund, Norway, and has traveled extensively on her mission.

“Forbidden Feelings’’ is about others and their emotions. But recently, using Tobii, McCullough wrote an essay for the book about her own emotions. On sorrow, she wrote: “A real cause for sadness is watching yourself or someone you love become quadriplegic and mute along with increasing pain and decreasing ability to express needs.’’

She described how she learned the value of crying and how the tears help soothe her. “My healthy side cries deeply for my losses; such as the loss of the ability to smile, to hold a pen and write, or itches that I cannot scratch, tears that I cannot wipe or hugs and kisses that I cannot return. The greatest loss of all is of course the loss of this existence which has given me such enormous pleasure!’’

But her “great, silent sobs’’ provide relief: “Somehow, the deep sobbing changes how I feel about the problem and makes it easier to bear and accept. Acceptance of fate is much more soothing to me than fighting what has happened if I can do nothing about it. That is the job grief was created to do if one knows how to use it.’’

Interviewing McCullough is a challenge for both parties. Her eyes get dry and tired. She has written on the screen: “I cannot move my head so much so eyes to my right means YES, eyes to my left means NO.’’

Does she still find joy in life? Eyes to the right: Yes. Does she have hopes? Yes. At Osborn’s prompting, she signals that it is her family and friends who provide the joy, and her hope is to finish her 250-page book.

Have people surprised her since her diagnosis? Yes. On Tobii, she adds: “So much CARING.’’

How does she accept what has happened? McCullough thinks for a moment, and then her eyes move almost imperceptibly. It takes a few minutes, but she finishes on the Tobii: “These questions too difficult.’’

But she has a ready reply to one last question: How does she feel?

Her eyes scan the screen and letter by letter, her answer appears. “At peace.’’

Bella English can be reached at english@globe.com.

‘ My healthy side cries deeply for my losses; such as the loss of the ability to smile, to hold a pen and write, or itches that I cannot scratch, tears that I cannot wipe or hugs and kisses that I cannot return. The greatest loss of all is of course the loss of this existence which has given me such enormous pleasure!’
Leigh McCullough, from her book in progress, “Forbidden Feelings’’

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