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Karen Stone, who used illness and writing to teach, dead at 62

By Tamara N. Shope
Thursday, February 14, 2008

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Karen G. Stone was free.

She always had been.

Sure, she had limitations - we all do, she probably would say - but she used them to reach a place that was more about hope than of longing.

They became, to her, a teaching tool.

Stone had multiple sclerosis for nearly 20 years. She used a wheelchair. And in recent years, she struggled through bouts of pneumonia.

But she lived fully through her writing, her passion for community, and through her friends and family - always looking for a lesson to share or savor.

She lived this purpose-filled life for 62 years. Stone died Monday, succumbing to pneumonia.

Stone - the pen name Karen Gottstein gave herself years ago - wrote a bimonthly column for the Albuquerque Journal for more than a decade.

Her "Meeting the Challenge" column gained a loyal following, and it eventually prompted her to write a book about the lessons she learned and experiences she had along the way.

"Awakening to Disability: Nothing About Us Without Us," published in 1997, was widely hailed as a book that helps people with disabilities as well as their families to better understand the community.

In it, Stone wrote candidly about issues specific to people with disabilities, whether they had dyslexia or a chronic illness. She wrote about transportation challenges, housing, aging and sex, all with humor and sincerity.

She wrote about the language, - do's and don'ts - including why handicap is unacceptable and why hearing impaired is just too generic.

Mostly, she wrote about her own experiences.

A hawk soars. So do I. He crees. I cry. We are moved. We are moving. I feel extraordinarily ordinary, like all the folks in the other cars, doing errands, noticing spring. These things so little are enormously accomplishing, enormously freeing.

She shared that 1989 memory in her book to help others see that she, like others with disabilities, was remarkably normal.

"We are all human," members of the same "club," she wrote.

The message: When we remember that we have so much in common, we can begin being comfortable around one another.

"Many, many people ask me where I find my joie de vivre. Quite frankly, the question always stumps me. And it still does," she wrote. "True, I now use wheels instead of shoes. But you want to know something? I also still enjoy good key lime pie, the 49ers, and a great joke."

Steven E. Brown, along with his wife and partner, Lillian Gonzales Brown, wrote the foreword to Stone's book.

Steven Brown said he wanted to participate in its publication because Stone was doing something that wasn't seen much in popular culture at the time.

"She wrote about it (having a disability). It was a big thing when she was writing. She wrote about it as a journalist, and there weren't many people doing that," Brown said. "I would say she was a pioneer, one of a group of pioneers, in doing that."

Adolf Ratzka was the man Stone considered her mentor, according to her column.

"I remember her clearly, a petite, beautiful young woman with dark hair and the eyes of a mountain climber and traveler to difficult places," Ratzka said. "For some reason she considered me a kind of mentor, but it was she who impressed me through her ability to take on challenges, like traveling to Sweden on her own in pursuit of material for a book and to rely on her unfailing ability to find interesting and helpful people along the way."

The National Multiple Sclerosis Society issued a statement on Stone's death to The Tribune. It read:

"She was a great support to many and to the National MS Society. Karen put a face to MS. She helped foster awareness of the realities of living with MS. Her writing was a gift of knowledge and understanding about disability. Her words touched many. She will be greatly missed."

Stone didn't write much during the last few years, save for e-mails to her friends and family.

Her last newsletter to them went out Jan. 29. In it, she talked about the lessons gleaned during 2007, a year of much illness for Stone.

"I suddenly realized as in many cultures, our lives are divided into four seasons: our youth springing forth like in the Spring; Summer being the accumulation of our adulthood; Fall being the simplifying of our lives; and Winter being the zenith of our wisdom. I was given the opportunities to experience the wonders of this Winter. . .."

And it was during her winter that Stone became truly free.

She used the experience, she said in the newsletter e-mail, "to pass on the torch to the younger folks."

Karen G. Stone lived with pluck and purpose for 62 years.

She was always fully alive.

She was always free.

Stone is survived by her mother, Ruth Gottstein, and two brothers, Dan and Adam Gottstein. A memorial will be held at 10:30 a.m. Saturday at First Unitarian Church, 3701 Carlisle Blvd. N.E.