Kim Maibaum, right, meets with Brad Scheelke for a bible study class at Oasis Books Wednesday afternoon. (Eli Lucero/Herald Journal)

Living with ALS
Published:
Tuesday, May 27, 2008 2:00 AM CDT
Text by Jennifer S. Christensen

With special thanks to Emilie Wilson, recreational director at Logan Nursing and Rehab

Kim Maibaum’s fingers used to fly through a sentence effortlessly, translating spoken dialogue into American Sign Language (ASL) for the hearing-impaired. An accomplished and highly respected interpreter and instructor, Kim has attended births, weddings, funerals, political rallies and other functions around the country, providing an essential communication link for the Deaf in a hearing world.

Today, Kim’s fingers drag slowly across an alphabet page, spelling out each word she wants to say one grueling letter at a time. Diagnosed in September 2004 with amyotrophic lateral sclerosis (ALS), Kim must increasingly rely on the assistance of her caregivers to make it through each day. “Life moves ever more slowly for Kim and her friends,” explained Brad Scheelke, who meets with Kim twice weekly for Bible study. “Communication is sometimes understandably frustrating for Kim, as she thinks very clearly but cannot write or speak except by slowly spelling out words or pointing to letters on a chart.”



“Certainly one of her biggest frustrations,” he continued, “is that since she is in a wheelchair and speaks only with great difficulty, many people treat her as if she were hard of understanding. Her mind and senses of hearing, sight, smell and touch work great. It is only her muscles that have slowly stopped functioning.”

“In layman’s terms,” explained Kim, “when you have ALS, all the nerves of your voluntary muscles die. If you can control it, you won’t be able to for long.”

Kim spoke to The Herald Journal recently from her room at the Logan Nursing and Rehabilitation Center (LNR), answering our questions with the assistance of Emilie Wilson, the center’s recreational director. “Kim is a neat lady,” said Wilson. “Once you get to know her, you realize that she’s done some amazing things in her life. I think it’s so sad that she’s trapped in a body that has such a terrible disease. When you talk to her, you realize she has an incredible mind.”

Kim’s story is a profile of courage, determination and resilience, a triumph of the human spirit. Herald Journal contributor Jennifer Christensen recently sat down with her for an interview.

Question: Where are you from, and what brought you to Utah?

Answer: I am originally from Rochester, New York but most recently from Worcester, Mass. I came to Utah in 1974 to go to USU and left in 1981 to return to school in Rochester. After that, I moved to Massachusetts but have spent every summer in Logan. I have been living in Logan fulltime for nearly five years.

Q: What’s your educational background?

A: I have two associates degrees, one in liberal arts and the other in interpreting. I also have a bachelor’s degree in home economics and family life. I became fluent in interpreting when I participated in the Interpreter Training Program at the National Technical Institute for the Deaf in Rochester.

Q: Tell us about your career as an ASL translator.

A: I was fortunate to be in the first group of 15 hearing students allowed into the National Technical Institute for the Deaf (located in Rochester, N.Y.). Surrounded by 1,000 Deaf students and Deaf professors, I had wonderful language role models, but it wasn’t until I moved to Massachusetts that I got cultural models. I worked at a school in Massachusetts called the Learning Center for the Deaf for 20 years and for many colleges and universities as a private practice interpreter. I worked for the state emergency on-call system specializing in medical and mental health. I spent one year interpreting at USU and a little more than that doing video relay with Sorenson Video Relay in Salt Lake City before I had to leave the field.

Q: What are some of your most memorable experiences translating?

A: I participated in seven births (one Caesarean-section) and many weddings and funerals. One time, I interpreted at a funeral where no deaf people showed up, but I couldn’t leave because I was stuck up on the podium with the priest. I had the opportunity to interpret a political rally with President Clinton and Sen. Ted Kennedy. I also had another opportunity with Arnold Schwarzenegger when he was doing his fitness promotions.

Q: What were your initial thoughts and feelings about your diagnosis with ALS?

A: When I was diagnosed with ALS in September 2004, I saw my life flash before my eyes and then went into denial.

Q: Did you study a lot about it?

A: Well, the only thing I could find is there’s no cure, and life expectancy after diagnosis is three to five years. I try to think positive by not getting sucked into the grim world of research that touts little on the horizon.

Q: How has ALS changed your life? What has been the most difficult part of it?

A: Giving up dreams, not knowing what’s around the corner. No one really does.

Q: What advice might you have for others?

A: Do your own research, don’t get sucked into what “they” say, think outside the box.

Q: How do you keep your mind and spirit intact when you’re physical body won’t cooperate? What helps you get through each day?

A: My faith … and comedy shows! I still have my mind and enjoy highly charged discussions.

Q: What were your hobbies and interests prior to being diagnosed with ALS, and how have they changed?

A: Gardening, walking everywhere, reading, driving long distances, taking care of my homes. I can’t do any of them now except reading, but only when I find someone who will sit and turn pages.

Q: Tell us about your support network of friends and family.

A: I have one sister who lives in New York who does her best to help long distance with business here and in Massachusetts. She or her family visit once a year, and she and I went on two cruises a couple years ago. I have friends who visit from out of state, and my church family, which has provided countless hours to enable me to remain at home for as long as I did.

Q: Has ALS made you a more religious person?

A: No. Fortunately, I was born again just prior to diagnosis. I discovered that no amount of doing things according to any religious doctrine would get one anywhere. Only my relationship with Jesus will save me.

Q: Do you get angry?

A: Of course. I was taken out of my home after Hospice dropped me. I can’t join friends and communicate easily. (Smiling) I get angry when people can’t read my mind!

Q: Are there definite stages in the progression of ALS, or is it different for each person?

A: It’s different for each person. I’m in touch with people who have far outlived the parameters of the typical life expectancy, one at 11 years and the other 16 years.

Q: What’s next for you?

A: To go back home. I’m prepared to hire help, but starting from scratch has proven to be problematic because I might have all but one or two shifts covered, but people can’t wait and they take other work. The “professionals” say I need 24-hour care, but I contend I don’t need someone to watch me watch TV. However, they hold the keys to my release. I have to hire people and get a housemate to cover 24/7 care.

Q: What’s it like to live in a care center?

A: I’ve been here since October 2007, and it’s a little Calcuttaesque: cramped quarters, too many people, noisy, hot, sickness spreads at the drop of a hat. I haven’t been felled by the flu for more than 25 years but got it here. I’m frustrated by the high turn over; just as someone gets to know me, new staff arrives. I had an organic diet prior, but now…

————

Now, Kim is at the mercy of a merciless degenerative illness for which there is no cure. Her brilliant mind, fully intact. Her sense of humor, witty as ever.

Her body, slowly slipping further beyond her control.

What Kim longs for most today is simply to go home.

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