HomeSuccess Stories - Living with SCI/DStories of Success After SCI/DKathleen DeSilva-Successful lawyer with vent-dependent C 1/2 SCI

3.22. Kathleen DeSilva-Successful lawyer with vent-dependent C 1/2 SCI

Living Without Boundaries

With Optimism and an Amazing Will, Alumna Kathleen DeSilva Defies the Odds

December 9, 1999

In 1973, a social worker noted that one of her clients, Rice University student Kathleen DeSilva, was setting unrealistic goals for herself.

DeSilva lived off campus at home. Five years earlier, at age 16, she fell from the uneven parallel bars at school and was paralyzed from the neck down. It was a C-1 C-2 spinal cord injury and, at the time of the accident, she wasn't expected to live for more than about three years.

She had already beaten those odds, but the social worker considered her life goals, which included law school, to be implausible.

In the 26 years since the social worker filed her report, DeSilva has often made the unrealistic real. She graduated from Rice cum laude and earned a law degree. She is currently in-house counsel to the Institute for Rehabilitation and Research (TIRR) Systems and on the board of METRO.

In '84, she was featured in an Esquire magazine cover story, "The Best of the New Generation," showcasing people under 40 who are changing America. The only other Houstonian recognized was then mayor Kathy Whitmire.

DeSilva '77 is, according to her doctors, the longest living C-1 C-2 spinal cord injury survivor in history. It has been an amazing survival and a phenomenal life. She has faced several near-death experiences and gracefully overcome seemingly insurmountable challenges.

"Kathy is one of the most remarkable people I have ever met, for spirit and the sense that nothing is impossible," says her friend and former teacher Bob Patten, the Lynette S. Autry Professor in Humanities. "She exemplifies courage and optimism and refuses to acknowledge any boundaries, and she does it all without any kind of shrillness. She is always calm and positive."

Charles Beall, the former chairman of the board of Texas Commerce Bank-Houston and current chairman of the board of TIRR, says that DeSilva "is one of the big reasons I left banking to work at TIRR full time. She is one of the most inspirational persons I've ever met.

"Thank goodness God has given her to TIRR for so many years. She gives so many people hope and shows what's possible after a catastrophic injury."

Beall, who has known DeSilva for about 15 years, says that whenever he sees her his day "literally picks up" because of her "brightness and warmth. I have never seen her have a bad day."

As in-house counsel, DeSilva handles all the legal work for the Houston-based TIRR hospital system, an institution that specializes in catastrophic accidents. She is also the director of risk management.

DeSilva is also a role model. "One of my favorite things about working here is the opportunity to meet new patients," she says. "I like to show them how I work in my office, what I do, and maybe it can encourage them to think about what they can do with their own lives."

After a catastrophic injury, DeSilva says, "it's pretty common for someone to think their life is over, but that's just not true. At some point you decide that you'll get on with your life, and that's what I try to convey: That you can still achieve your goals, but you might have to change them slightly. My first goal was to be a doctor, but I had to change it and be a lawyer, but that's OK."

At METRO, along with her work on the board, she chairs the METROLift Advisory Committee.

Robert Miller, chairman of the board of METRO, describes DeSilva as "one of the most courageous people I've met and one of the most intelligent. Certainly she has her achievements as an attorney, but it's her personality, passion and optimism that make her such a joy to work with."

Soon after DeSilva joined the METRO board in '98, she met with Bob MacLennan, then general manager, and Julie Gilbert, vice president of communications and marketing. MacLennan briefed DeSilva on various subjects and at one point wanted to give her some phone numbers. DeSilva said that it wouldn't be necessary to write them down because she had a good memory. When the meeting ended 10 minutes later, Gilbert could not resist: "OK, tell me those numbers he gave you." DeSilva rattled them off.

DeSilva says she has always had a good memory and since her accident, she's developed mental skills to make it even sharper.

Patten says he wasn't surprised when he heard that she sailed through the Bates College of Law, because law school requires the mental storehousing of vast amounts of information, and in his Victorian novels class, "she remembered every page of 'Bleak House.'"

DeSilva also chairs the Personal Assistance Service Task Force of the Coalition for Texans with Disabilities, a group that lobbies state legislators for home community-based services funding for the disabled. She is also the chairperson of the Houston Mayor's Committee for the Employment for People with Disabilities, a group providing educational scholarships and recognizing exemplary employers of the disabled. She also gives speeches to various groups on accessibility.

She attributes her long survival in part to "luck and good fortune. And it helps to have been blessed with a very supportive family," says DeSilva, who notes that her late parents gave her constant messages of love and encouragement and made sure she had the finest medical care.

A strong will also has helped. A '96 biography of DeSilva, "Don't Tell Me I Can't," by Deborah Betts Morehead, recalls a moment on her 18th birthday when DeSilva, alone, said aloud: "Dear God, I will not give up. I will go to college and I will make my parents proud of me."

Her doctor, Ed Carter, the former director of the spinal cord injury center at TIRR, recalls that "she and I butted heads in the early years. She was very stubborn, but that's what's gotten her so far."

It has been 31 years since the accident, when she and two other members of her Shreveport high school gymnastics team were practicing on the uneven parallel bars, attempting a move they'd seen at a meet. When DeSilva tried the routine, she lost her grip and landed on her forehead.

She could not move or breathe. A gym teacher performed mouth-to-mouth resuscitation until an ambulance arrived.

The original prognosis was that she had from a few months to three years to live. A few months after the accident, she was flown to TIRR in Houston. "Learning to breathe with a machine was the most difficult thing I had to do, and it was terrifying," she says. "I never thought I was getting enough air. When you get nervous or anxious, you breathe rapidly, but the machine does not change the breathing rate because of your emotions."

Gradually, she became more comfortable with her breathing, taught herself to talk again and to type with a mouth stick. She was fed through a nasogastric tube until she learned to swallow by accident. An on-duty nurse was drinking a soda one day, and DeSilva asked if she could have some ice. When some ice accidentally slipped down her throat, she was able to swallow it.

Life in rehab was "frightening and also maybe a little boring," she says. "All I did was lay in bed all day. That's why school was so important. It was a way to keep my mind occupied."

DeSilva entered Rice in '70 and attended freshmen events at O-Week. Her mother, Kathleen Joyce DeSilva, pushed her wheelchair and took notes for her in classes. Rice was not wheelchair accessible in those days.

"My mother would have to pop me up and down curbs. There weren't any ramps, although they did later put up some makeshift wooden ramps."

DeSilva took two Shakespeare courses from Professor of English Dennis Huston. She would sometimes miss classes because she had to spend time in the hospital, and during those stretches Huston would go there to help her catch up. Occasionally, he would act out scenes from Shakespeare as amazed hospital staff looked on.

Huston recalls that DeSilva was "absolutely rigorous" in her work. And he says that when she did have to miss two weeks or so of class to undergo a major operation, she'd come back completely prepared.

Noting the incredible amount of detail in her course papers, Huston observes: "I had the sense that she would write her papers in her head and when she was ready to dictate, they were mostly done."

She took a Victorian novels survey course from Patten and "did astoundingly well on her oral exams," he says. Recalling that as a student, "she once offered to baby-sit for my two kids," Patten says, "She is absolutely phenomenal."

Looking back on her Rice days, DeSilva says, "academically, it was marvelous." She notes that "students and faculty certainly tried to make me part of the campus atmosphere even though I couldn't stay there overnight." She slept at her home and had a room at Brown College where, between classes, she and her mother would take breaks.

At Rice, she says she made many friends and dated.

As if life for DeSilva had not been difficult enough, she faced another devastating event in '74 when her mother died of a brain aneurysm. Student volunteers began taking her notes and pushing her to classes.

Her strong will was certainly in evidence in on the day of a Christmas banquet at Brown College that same year. Her nurse at TIRR said she couldn't go because she had just undergone a spinal instrumentation operation in which a steel rod had been placed along her spine to give it more stability. After the operation, she couldn't sit for several months and had to be flat on a table.

But DeSilva would not be denied. She had her student friends strap her to a standing table and push her across Fannin and Main streets. To keep her upright at the party, a faculty associate tied the table to a door with nautical knots. "It was lots of fun," DeSilva recalls with a laugh.

When the nurse learned that DeSilva had gone out, she sent an ambulance after her, but DeSilva wouldn't budge. Hours later, when she did return to the hospital in a food service truck, she received a stern lecture from the nurse.

After she graduated from Rice and Bates College of Law at the University of Houston, DeSilva and some women friends opened a store in Houston featuring gifts made for and by women. Says DeSilva, "I was very much a product of the '60s: A strong believer in women's rights and equality." During that time, she and three friends drove in a small Honda to a women's festival in Michigan where they camped in the woods.

Since her accident, DeSilva has had several terrifying near-death experiences. In '69, the motor of the iron lung she was sleeping in caught on fire. Her mother came to her rescue after smelling smoke. She never used an iron lung again. In '91, while she was having lunch at a private club, the battery in her phrenic simulator breathing machine quit and she had forgotten to bring her backup bag for emergency breathing. She was saved by a waiter who found another battery. In '96, she nearly died when the humidifier on her ventilator turned over, causing the machine to pump water into her lungs.

Despite such scary moments, she has refused to take a cautious approach to life. Says Carter, "She has been over the years what I would call an extra-smart risk taker. She calculates the pros and cons of her actions."

When she went to Rice, for example, she didn't carry a backup ventilator, which had been recommended. It was a risk, Carter says, but a calculated risk. DeSilva wanted to get through school with as much mobility as possible, he says: "She was motivated to independence."

Once every April, DeSilva and Carter get together over cheesecake. Their annual ritual is a celebration of her survival.

She says it is frustrating to be dependent, "having to have someone else do everything for you. It would be nice to get up one morning and get out of bed and watch the sunrise. I can't do that unless I get up at 3 a.m., because it takes two to three hours to get out of bed. Your whole life is basically scheduled. There lies the frustration. You just have to learn to live with it."

She calls her husband of 15 years, Peter Simmons, "the joy of my life, absolutely." Simmons, a computer consultant, is disabled from a motorcycle accident. He has movement in his upper body and is self-sufficient.

Describing the special nature of their relationship, she notes that Simmons often "wakes up in the middle of the night to get me a drink of water or to scratch my nose."

When not working at her job, which she loves, DeSilva says she enjoys hanging out with Simmons in their Heights home, cooking, dining out, shopping, visiting museums and playing the stock market on the Internet. "So far, I'm making money," she says.

A big fan of the Internet, DeSilva says she can enter libraries around the world to research and copy information from an online publication to any of her legal documents. "It's a phenomenal thing," she says.

DeSilva says she hates being put on a pedestal and considers herself an ordinary person with hopes and dreams. "I still want to be looked at as anybody else," she says, "a person trying to make a good life for herself."

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