CINDY SKOP/LEDGER PHOTOS
Kathy Sauviac loads herself into her aging van outside her Lakeland home for her commute to her job in Osceola County, while her service dog Skye waits to board. Sauviac, 53, still works as a cruise line reservation agent, six years after she was diagnosed with ALS, a degenerative neuromuscular disease.

HOW TO HELP
A fund for donations to help Kathy Sauviac obtain a new van has been created at SunTrust Bank. Checks made payable to "Kathy Sauviac Fund" may be sent to any SunTrust location. Donations also can be made online at www.gorilla-haven.org/ghdonations-kathy.htm.





Published Sunday, March 25, 2007
WORKING THROUGH IT

To This Working Mom, Surviving ALS Is Just Another Job

By Gary White
The Ledger


Lou Gehrig labeled himself "the luckiest man on the face of this earth." Kathy Sauviac also considers herself pretty fortunate. After all, how many people share get to their work cubicles with a black Lab eager to bestow kisses?

A sanguine disposition is not all Sauviac shares with the late baseball player. Diagnosed six years ago with amyotrophic lateral sclerosis (ALS), a degenerative illness also called Lou Gehrig's disease, she has lost the ability to walk, breathe on her own or feed herself. She has limited use of her hands and relies on a power wheelchair, a mechanical ventilator and a feeding pump.

Yet Sauviac remains part of the work force, commuting from her Lakeland home to her Osceola County job in a modified van she drives by toggling a joystick, all the while accompanied by Skye, her service dog. It might seem heroic to others, but Sauviac dismisses any idea of exceptionality.

"I don't think of myself as different from anybody else," said Sauviac, 53. "Everybody has challenges; this is just mine. I just do what I have to do. Some people have it a lot worse than I do."

Sauviac draws fulfillment from her job as a reservation agent for Disney Cruise Lines, but she's also motivated to work by the fear of what would happen if she stopped. Florida's public safety net doesn't provide home health care for adults with disabilities, and to make matters more precarious, Sauviac's youngest son, David, needs a kidney transplant. David, 20, had to leave his job at a car dealership and can no longer contribute to household expenses.

Without her job, Sauviac said she would be forced to enter a nursing home. All that stands between her and that unwanted fate is an aging Chrysler van with a leaky engine and a shaky transmission.

Sauviac, otherwise cheery and matter-of-fact, breaks down as she considers the prospect of losing her self-sufficiency.

"I just have to be able to work; I don't know what we'll do if I can't," she said, adding: "I feel like I do a good job at what I do. Why shouldn't I be allowed to live and work in the community like everybody else?"

absorbing blows without giving up

ALS is among the cruelest of diseases. It causes a progressive decline of physical functions, leading to paralysis of the muscles that control not only mobility, but speaking, swallowing and even breathing. There is no cure, and most patients live only two to five years after diagnosis, though about 5 percent survive 20 years, according to the ALS Association.

A few years ago, an advocate for the disabled told Sauviac she should quit her job, write her will and prepare for her death. Sauviac dismissed the advice.

"A lot of people when they get this diagnosis - and sometimes it's what their doctor tells them: 'Go home and get your affairs in order because you don't have much time,'" she said. "Well, nobody knows how much time they have."

One prominent example of longevity is the British physicist and author Stephen Hawking, who remains active more than 40 years after his diagnosis with ALS.

Sauviac worked for 15 years as an occupational therapist, first in a hospital, and later in a school system in Louisiana, where she assisted disabled students. She and her late husband, Norwood, also served as foster parents for disabled children, at one time overseeing a brood of six, including their own four kids. The family moved to Lakeland in 1996, and Sauviac soon joined Disney Cruise Lines as a ground service agent at its Celebration office.

Life took a jarring turn in 2001. Right around the time Sauviac was diagnosed with ALS, her husband went into renal failure. She was unable to care for him, and Norwood spent his final year in a nursing home, dying of kidney failure at age 55.

Following her husband's death, Sauviac was nearly removed from her home by a state agency on grounds of being unable to care for herself.


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CINDY SKOP/LEDGER PHOTOS
Kathy Sauviac is determined to remain self-sufficient as long as possible. "I just do what I have to do," she says.

Sauviac lost her ability to walk and to breathe unaided within a year of her diagnosis. Facing a decision many ALS patients must confront, she chose to undergo a tracheotomy, allowing a plastic air tube to be inserted into her throat. The ventilator, a little larger than a laptop computer, sits on a shelf on the back of her wheelchair, emitting a mechanical hum like an idling airplane.

As she talks, Sauviac sometimes gets ahead of the airflow, causing a word to drop out or forcing her to gulp for breath. Other than that, the respirator doesn't seem to bother her, nor does the feeding tube. A pump near the wheelchair's headrest propels yellowish formula from a clear plastic bag directly into her stomach at regular intervals.

"That's breakfast, lunch and dinner," Sauviac quipped. "I'm a cheap date. Once I'm plugged into all this stuff, I'm ready to go."

Dr. Eric Lipson, a pulmonologist at Lakeland's Watson Clinic who treats Sauviac, said not many patients are willing to accept life with a permanent air tube in their throats.

"I think you have to put yourself in the patient's shoes," said Dr. Eric Lipson, a pulmonologist at Lakeland's Watson Clinic who treats Sauviac. "Some people don't want to have a life on a respirator, and other people do this. It's a very terrible disease, and I think she's managed beautifully … the best I've ever seen. She's a wonderful lady.

David, who requires dialysis treatments, is unable to handle strenuous duties in the double-wide manufactured home he shares with his mother, and Sauviac's other three grown offspring live outside the area. Friends come by regularly to help her with personal tasks.

Sauviac, who speaks in a slightly hoarse voice, lives with the looming prospect of losing her ability to speak. If that happens, she plans to employ an electronic speech simulator like the one Hawking uses. She said she might be able to continue handling reservations for Disney by e-mail, or she might accept a standing offer of a home and job from a friend in Georgia who operates a gorilla sanctuary.

helping hands and paws

As Sauviac's body has declined, Disney has adjusted her job duties in keeping with the Americans with Disabilities Act. The company moved Sauviac "back stage" into its reservation office, and later redesigned her work space, installing a movable, electronically controlled desk and keyboard tray and adding computer software that lets her dial her phone via computer screen.

Sauviac also gets help from Skye, a 4-year-old black Labrador retriever. Skye, wearing her blue vest, accompanies Sauviac everywhere, including the office, pressing buttons to open automatic doors, handing Sauviac her phone headset and generally saving her from having to seek assistance from co-workers.

Sauviac's office nameplate bears the identification "CTC," for certified travel consultant, and her helper has one that reads, "Skye, AKC" (for American Kennel Club).

Rachelle Tunik, Sauviac's former supervisor before moving to a different position at Disney, said she's not surprised Sauviac has managed to keep working.

"I think Kathy is the kind of person who inspired people around her with her 'can-do' attitude long before she had this diagnosis," Tunik said, "and she was going to find a way to overcome just about any obstacles put in her path. ... The things other people see as going above and beyond, Kathy sees as a normal part of performing her role."

Performing that role means making the 30-mile commute to work, and Sauviac worries about how much longer she can do that. Mechanics have told her the van's engine is beyond repair, and a failing transmission and other problems mean Sauviac's best option is replacing the entire van. Florida's Division of Vocational Rehabilitation, which supplied the equipment and modified the van, has approved Sauviac for a new control system, but it's up to Sauviac to buy the van. Only a few models designed with lowered floors are candidates for the customization, and the base cost would be about $30,000.

With her savings depleted by repair costs and David's medical expenses, the self-reliant Sauviac reluctantly heeded a friend's advice to seek outside help and created a bank account to accept donations toward the purchase of a new van.

Work is not the only concern. Sauviac usually chauffeurs David to his thrice-weekly dialysis sessions because the treatment leaves him too weak to drive afterward.

determined to keep working

Kathy Sangster, a vocational rehabilitation counselor based in Lakeland, has assisted Sauviac for several years. Though some might assume a person with advanced ALS would be better off not working, Sangster supports Sauviac's quest.

"I don't think it would benefit her mental health" to stop working, Sangster said. "She's a very social person, and she gets a lot of interaction from work and a lot of self-satisfaction from having been able to maintain her ability to work. I wouldn't want her to have to quit working without it being her choice."

David Sauviac, who copes with the frustration of being unable to work, understands his mother's choice.

"I think most people are surprised she can still work through all that," he said. "It just shows how strong she is."

Kathy Sauviac's strength shows no sign of fading.

"I was talking to Dr. Lipson this morning, and he said, 'You could go on 20 or 30 years like this,'" Sauviac said. "Your mind is still there. As long as you can compensate for your physical impairments, you can do anything you want with your mind."

And what Sauviac wants is to be just another commuter and cubicle-dweller.

Gary White can be reached at gary.white@theledger.com or at 863-802-7518.