Creating Awareness One Day at a Time

by Kathy Wechsler on Sat, 2004-05-01 07:00

“I take this as just another challenge for me,” said Karen Jorgensen, 61, who received a diagnosis of ALS two years ago. “I’ve always been very optimistic. And I think that’s a good way to start.”

Living in Berkeley, Calif., with her partner, Karen Toloui, and Jorgensen’s two adult children, Nahjeen and Neevon, Jorgensen uses a power wheelchair and tires easily because of respiratory problems brought on by ALS.

Instead of dwelling on her symptoms, the former teacher feels fortunate to have lived such a full and rich life.

Karen Jorgensen and Karen Toloui enjoying breakfast
Karen Toloui, left, cuts Karen Jorgensen’s waffles at a restaurant in Berkeley, Calif., in July 2003. Photos by Erin Lubin

Making the most of it

“I’ve done things I really feel good about,” said Jorgensen, who has written a memoir and is looking for a publisher. “So, I think it’s because I feel satisfied with my life that I stay so positive.”

Half narrative and half photographs, Jorgensen’s manuscript is called Falling Practice. The title is a metaphor for loss and is about her experience living with ALS.

“Loss is something that we all have to cope with. Life is really about loss and adaptation,” said Jorgensen, who lost her eldest daughter, Gita, in an automobile accident three years ago. The title of her manuscript reflects the loss of muscle function, mobility and ability caused by ALS.

“It speaks not just to people with ALS. I think that it speaks to a broader audience,” Jorgensen said. “We’re all going to die. Our bodies are all going to change. We just have to come to terms with that. I try in my way to deal with it.”

With an emphasis on living in the moment, Jorgensen’s memoir relays the danger of holding onto false hope.

“If you’re always hoping that there’s going to be a cure, you’re going to be set up, especially with this disease, to so much suffering and disappointment in the process,” said Jorgensen. “Part of what I’m talking about in the book is simply accepting, at the same time taking care of myself. You have to kind of hold both things at the same time.”

Jorgensen is collaborating with a young photographer, Erin Lubin, who has taken beautiful pictures of her daily life for more than a year. Jorgensen has given Lubin permission to photograph her until the end of her life.

“There isn’t another book that really shows people what this disease is like,” said Jorgensen, who hopes to get her book published before she dies. “Even despite all of that, I think Falling Practice is very upbeat.”

Knowledge is power

“I just felt it was something I needed to write,” Jorgensen said. “I wanted to have my say. Since I have this disease, part of me just wants to teach people what it is.”

Karen Jorgensen receiving physical therapy
Jorgensen receives physical therapy from her full-time caregiver, Amelene Felix.

Jorgensen’s desire to educate isn’t a new development. She’s worked in education for 25 years, has the heart of a teacher and loves to write.

Most recently a 7th-grade English and history teacher, Jorgensen was forced to retire in June 2002.

“I didn’t really want to leave teaching. I loved it. On the other hand, I just had to come home and rest,” Jorgensen said.

Wanting to try her hand at a variety of teaching positions, Jorgensen gained experience teaching elementary and middle school as well as one-on-one reading with struggling students through the Title I reading program.

In the process, she became involved in national teacher training. She’s written a number of curriculums about social studies and history, and published two books for teachers that were distributed nationally and internationally.

Give me an 'O!'

Jorgensen sent her manuscript with pictures to her friend Judy Stone in New York. Stone, an editor of “O” (Oprah Winfrey’s magazine), liked it so much she decided to excerpt 3,000 words from Falling Practice and submit it to "O" magazine as a possible article.

With her article still in the final stages of acceptance, Jorgensen hopes that exposure in the popular magazine will improve her chances of getting her book published.

“It would be great if it were in 'O' magazine,” said Jorgensen, who’s devoted to creating awareness of ALS. “There’re so many women that read that magazine. Oprah is so powerful.”

Kathy Wechsler
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