A Voice to Speak for Others

A sign hanging over Kate Adamson's hospital bed read,"THIS IS A HUMAN BEING LYING HERE, PLEASE TREAT HER AS A PERSON. SHE UNDERSTANDS EVERYTHING YOU SAY." The sign spoke volumes about frustration, a tenacious will for survival, of love, and of hope.

One day Kate Adamson was a happy wife and mother of two young daughters, with an active interest in physical fitness. She had a nice California home, her husband had a thriving law practice, and as she settled into bed that night, her biggest concern was working out the details of meeting a friend for lunch the next day.

By the next evening, however, Kate was in an intensive care unit, totally aware of her surroundings, but unable to respond. As she laid there, she listened as doctors, who assumed she could not hear them, were discussing whether or not to treat her. Kate had suffered a double brain stem stroke and her life hung by a thread. "If she lives," her husband was told, "she will be a vegetable."

Even when surrounded by caregivers, family and friends, she felt totally alone, locked outside the world in which others dwell, silently looking in. Kate knew that somehow she had to find a way to let someone know she was there. She had to unlock the door and rejoin the rest of the world. In her silence, she prayed for a miracle from the only One who could still hear her voice.

"Most frustrating for me," says Kate,"was when people would talk as if I wasn't there. I could hear and see everything. I could feel everything. I could do nothing." She recalls that when the minor surgical procedure to insert her feeding tube was performed, she was given an anesthetic, but not enough. She was able to feel the pain of the whole process, but couldn't let anyone know.

One has to wonder how many people are aware, but locked in, and never emerge, as Kate has done, to tell their stories. A recent study (Dr. Nicholas Schiff, et al, published in Neurology) suggests that there may be far more awareness than previously thought in patients who are thought to be minimally conscious or in a vegetative state. Using the latest fMRI technology to measure brain response to stimuli, the researchers found that minimally conscious patients, while lacking in other areas of brain function, responded almost identically to normal subjects to the voices of relatives telling stories of shared experiences. There were even indications of activity in the brain's visual processing areas of a patient with his eyes closed, listening to his sister's voice. This could be an indication that he was forming mental images as he heard her speak.

Dr. Joseph Fins, a colleague of this study's authors, and head of the Ethics Division of New York Presbyterian Hospital's Weil Cornell Medical Center, is quoted in the New York Times  as saying, "This study gave me goose bumps, because it shows this possibility of this profound isolation, that these people are there, that they've been there all along, even though we've been treating them as if they're not."

Kate Adamson has emerged from her profound isolation. When asked in a telephone interview if she had felt like giving up at times during her long journey back to a normal life she said, "Oh yes. I was often frustrated, sometimes angry. But now I see what God was doing. He has given me a voice to speak for others who cannot speak for themselves."

Kate's husband, Steven Klugman, was key to her recovery. Kate says, "My husband chose to weigh in on the side of the sacredness of life and the law. He was the best advocate one could have." Steven clung as tenaciously to Kate's life as she did herself. He spoke to her expecting that she could hear him. He left praise music playing for her continuously. He fought the insurance companies who wanted to give up on her. He refused to have her transferred to a skilled nursing facility (nursing home) and instead got her transferred to a hospital with rehabilitation facilities. He even shut down his law practice so he could be by his wife's side as she recovered. "They said he was doing this for his own reasons," Kate said. "They thought he was insane."

It was Steven who first understood Kate's signals to the world outside her own mind. She had discovered there was one thing she could do. She could blink. Steven and a friend were visiting Kate. As was his custom, he spoke to her. She blinked in response. Could it be? As Steven and their friend looked on, Kate responded with a second blink when asked to do so.

"Praise God!" exclaimed Steven.

"Yes, praise God!" thought Kate. "I am no longer alone!"

Steven's next task became convincing others that Kate was communicating. The sign went up over her bed, and soon Kate learned to use a letter board to spell out what she wanted to say. As someone held up the board and pointed, Kate used blinks to indicate which row a letter was in and then which letter in the row. The first word she spelled out was, "home."

After months of hard work and therapy Kate did improve enough to go home, and there continued her recovery. Now, nearly ten years after her stroke, she walks with a limp and cannot use her left arm, but otherwise leads a normal life. A little more than normal, actually. The email exchanges through which the author got information for this article happened on either side of a trip to Wisconsin. The telephone portion of this interview took place just a couple days later while she traveled to the airport for a trip to Florida. There Kate will take part in a rally for Terri Schiavo, one of those for whom she believes God has given her a voice to speak. She travels the country as a motivational speaker, an advocate for the disabled, and to educate people on living with disabilities and the warning signs of stroke.

Kate Adamson has written a book about her experiences. Kate's Journey: Triumph Over Adversity, details her journey back from the isolation caused by her stroke and the resulting catastrophic brain injury. You can find more information about Kate Adamson's work, links to her writing, and to articles written about her at her web site: KatesJourney.com . Her book can be ordered through the web site as well.

When asked about Terri Schiavo, Kate answered, "I believe because of my chance for recovery, the right environment and love, I was able to thrive. Terri deserves that opportunity. This is a woman who has had no opportunity at rehab. Who knows what she can do?"

When asked for advice on how families and friends can best help their loved ones who are "locked out," Kate says, "It's the squeaky wheel that gets the grease." She encourages families to become actively involved in the medical decisions, even insisting on treatments when necessary, as her husband did for her. She also recommends playing music, human touch, and talking to the patient assuming he or she can hear you. "Treat anyone," she says, "as you would want to be treated."

Credits:
Study referred to in this article: N. D. Schiff, MD, D. Rodriguez-Moreno, MS, A. Kamal, MD, K. H.S. Kim, MD, PhD, J. T. Giacino, PhD, F. Plum, MD and J. Hirsch,PhD; fMRI reveals large-scale network activation in minimally conscious patients,NEUROLOGY 2005;64:514-523, American Academy of Neurology. (Abstract available here.)

Thanks to Kate Adamson for permission to use the photographs posted with this article and for  taking the time out of a very busy schedule to share her story.

Comments

[John]

Dory, I was so moved by this post that I have linked it to my site as a must read!
Thank you for your tenacity in fighting for Terri.
God bless you and yours.

[Tammy]

Hi Dory,

Wonderful and inspiring story. Thanks so much for writing it.

Sorry about the double trackback...feel free to delete one!

[molly]

Hey, I'm linking to you too! Thanks for all the great work you do!

[karen]

Thanks, Dory, for pursuing this story. I am getting the girls to read this one. --Karen

[Margaret]

Thank you for posting Kate's story. It is moving. I am reminded of my visit to see my father after he had his second stroke. He could no longer talk to us but he could communicate by blinking and other means. He could tell us that he was feeling itchy. He even laughed at the things that I was telling him about my work.

People should stop saying that these people cannot understand what is going on around them. It is not true.

Maggie