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Volume V Issue XXXVII

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Seattle Washington USA


CECILIA MAIDA: ROAD WARRIOR
by
KATHLEENGILLIGAN
CeciliaMaidaRV1.jpg (111477 bytes)

Many of us anticipate our lives instead of living them, which can cause all kinds of problems. The next promotion, a new car, a bigger house: these will make us feel alive, once we get them.

Then there are those who anticipate their deaths, a different sort of problem altogether.

Cecilia Maida has taken both approaches in her 41 years of life. And guess what? Neither works very well.

At just 19 years of age, Cecilia had a plan. The Beaumont, Texas native used her college background in computer science and marketing to land a dream job at Hewlett-Packard. She figured she'd finish her studies and bank some time at H-P, climb the corporate ladder, move out to California. Along the way, she planned to marry, have children and see the world.

Her plan crashed one day when she woke with a piercing pain in her abdomen, and was hospitalized. Tests showed she had polycystic kidney disease (PKD), a life-threatening condition that causes painful cysts and leads to renal failure more than 60 percent of the time. There is no cure and no therapy. A doctor told her people either have PKD in infancy and die young, or the disease shows up in their late 40s.

Because she was 19, the doctor theorized that she'd been born with PKD, and outlived her prognosis. He told her never to consider having children because the condition is hereditary, not to mention that her body, with its hugely swollen kidneys, probably would not allow her to carry a baby to term. Then, he added this chilling prediction: ``You'll be lucky if you live until you're 30.''

``My life had ended that day,'' she said. Her head still spinning 10 days after learning of her diagnosis, she sat in the living room of her friend Clyde's house, sobbing. She then heard a sound: ``swish, swish, swish,'' and looked out the window. There she saw a woman on a skateboard, a friend of Clyde's who had no arms and no legs. The woman hobbled with her skateboard up the five steps and onto Clyde's porch, where she maneuvered the screen door open, then used her skateboard and the coffee table as a ladder to the couch.

``She was flat on her back, her hair was in her face, she was exhausted,'' Cecilia said. ``It was a major ordeal. But, she flung her hair back and with a great big smile on her face, said, `Hi, Clyde!' ''

``I'm over there crying and boo-hooing, and I realized, `I don't have a problem.' This got me out of pity mode,'' she said. For a time, she was able to continue working because doctors prescribed an experimental cancer drug that offered PKD sufferers pain relief without the side effects of grogginess and lethargy of many pain killing drugs. And, despite a vow to never let a man love her because she'd die and leave him lonely, she took a big chance with a man named John Wanders.

She dated John, and things got serious. Still, Cecilia revisited the doctor's words about her impending demise, and wondered if she was being fair to her boyfriend. She saw John gazing upon a woman holding a baby in a restaurant, and surmised that he too wanted children.

``I thought, `If I love him, I have to let him go so he can meet a normal chick who can have kids and not leave him alone,' '' she said. She abruptly broke up with John, but didn't tell him the real reason. She did tell her friend Colleen, however.

``It's wrong of you to play God,'' Colleen told Cecilia. ``Why don't you let John make his own decision?'' So Cecilia told John why she'd pushed him away. He told her he didn't care if he only had six months with her, that she was the one for him. He left two days later to visit his family for two weeks, telling Cecilia ``When I get home, you're number is gonna be the first one I dial. Trust me.''

On the Sunday that John was to return, Cecilia did receive a call, but it was from a nurse at a Jackson, Miss., hospital. John had fallen asleep at the wheel, and died driving back to Texas.

Devastated and in severe pain again because the experimental cancer drug that had given her relief had been pulled from the market, Cecilia decided she would no longer delay any plans she had, because life is too uncertain. She packed her things, and moved to Northern California, where she did what might be described as ``hyper living.''

``I became an adrenaline junkie,'' she said. She took up river rafting, surfing, kayaking, motorcycling, bungee jumping - all kinds of active play that kept her feeling alive, despite the pain. ``I was 24 years old, and to me, I had six years left. I was tempting fate, really, hoping I died doing one of these activities. I thought, ``God take me, never hook me up to a machine.' I was really living on the edge.'' She worked periodically in computer-related jobs, and, when her 30th birthday rolled around, she experienced profound rage.

``I'd lived my entire life thinking I was dying,'' she said, adding that she would have lived differently if she'd known she'd survive past 30. ``Just because a doctor tells you you may die, you don't have to. The mind is a powerful thing. Some people go in, and the doctor says, `You have six months.' They pay their bills down, buy a burial plot, and they're dead in six months.

``Other people go in, and say, `Yeah, right, you can just kiss my butt. I'm waiting until my daughter graduates.' But why not say, ``I'm waiting until my daughter gets married?' You can program your mind.''

Cecilia was soon going to find the means to reach many, many other PKD sufferers with the message of mind over matter, and making life count for something. In 1991, she stumbled across the Polycystic Kidney Research Foundation, where she learned that PKD is the most common life-threatening genetic disease in the world. She continued working, researching the disease, attending PKD conferences, and enjoying active sports. In 1996, though, doctors at the Mayo Clinic told her she had four to five years before she'd be have to go on dialysis. This bit of news forced another life decision, which she mulled over a stretch of time.

``I had seen my dad (who has PKD) sitting there on the machine, suffering so horribly,'' she said. ``This is just a slow, slow, agonizing way to go.'' By January of 2000, she was still not working due to the pain, and living on Social Security. That might have been the biggest bite for Cecilia, who admits to having been conditioned like many others: ``I was into me-me-me, the new car, the corporate ladder, the whole bit.

``I had to be reduced to nothing,'' she said. ``I had gone from making $45,000-$50,000 a year, to getting by on $1,000 a month. I couldn't even afford to get my teeth cleaned. I thought, ``This is my life,'' and it terrified me. I had no safety net, there was no planning for anything. I was truly humbled, brought to the low point of low.''

Despite what most people would consider good reasons for feeling bad, Cecilia ultimately concluded that she was just ``feeling sorry for herself.'' She had a test of her kidney function - and they tested ``normal.''

``I looked up at the sky and said, `I gotcha,' '' she said. ``I felt this awesome burden of responsibility. Wouldn't it be the most selfish thing in the world not to help 15 million people (who suffer worldwide from PKD)? I believe in signs from above, and my story is one I knew would work in the media.''

So she put her belongings in storage, bought an '84 recreational vehicle, and she and her Dalmatian Max embarked on the ultimate cross-country roadtrip to raise PKD awareness and advocacy for research dollars.

One huge motivation was this: At a 1997 PKD conference, a scientist, standing casually on a break with a coffee cup in his hand, told her, ``Oh yeah, we believe we're within five years of a cure, maybe two, if we had money (to continue research), but we're broke.'' This floored Cecilia, and the memory of his words moved her temper to flare during a later appearance before Congress: ``I advise you to remember my face and my name, because I'm going to tell anyone who will listen that you're helping institutions, those in the dialysis business, to continue to thrive. They're guaranteed a repeat clientele, who know they go (to dialysis) or they die. I'm sorry to threaten you, but I feel threatened.''

Cecilia contends that politics and greed keep research dollars at bay. She wonders why the government seems willing to spend money for dialysis, not to mention Social Security and disability, but does not allocate a heftier sum for research. In 1997, for example, taxpayers spent $2 billion on dialysis; by contrast, the National Institutes of Health allotted $11 million for PKD research, Cecilia said. And despite the fact that 15 million people worldwide and 600,000 in the U.S. suffer from PKD, the PKD Foundation has only 10,000 members.

``Members turn into research dollars,'' she said. On the road, a typical conversation goes like this: ``You say `PKD,' and they say, `What's that? I've never heard of it.' ''

That burns Cecilia up, especially when she thinks of the scores of e-mails she receives from other people with PKD. One in particular still moves her to tears:

``Thank you for your efforts toward finding a cure for this terrible disease. My heart is failing worse and worse due to prolonged dialysis and I will die. I feel very bad tonight and short of breath. I am so tired. All my long term friends have died this year on dialysis and I am the only one left and I am scared. Tell people for me I have suffered great loss in my family at the early ages of Dad 40, brother 48, grandmother 44 and soon myself 45 with PKD. I have been living on a machine for 12 years and endured much suffering from a slow death. I have cost the taxpayers a fortune since 1984. God be with you in your travels and success in making the country aware of PKD. My time is running out my friend. Goodbye.''

``I tried to reply a couple days later, and he was no longer there,'' Cecilia said, quietly. ``This man is just one of many, who see their whole families decimated. They deserve the dignity of people knowing the name of the disease that wiped out their whole family.''

And more, Cecilia said they need to hear a call to action: ``People need to get pumped to fight,'' she said. ``PKD makes you tired and lethargic anyway, and people give up hope. But this is a time to get up off the couch, and do what you can, right now. Even if it's rough for you. We are not dying of an incurable kidney disease any longer.''

Cecilia's main goal for the roadtrip is PKD awareness, and getting more PKD Foundation members. Shortly after she started her quest, Coachmen RVs gave her the use of a top-of-the-line recreational vehicle for 10 months. After seeing a news story that appeared in the Indianapolis Star, a reader offered to build her a Web site that would track her journey and include pledge forms and a way to contact Cecilia. PocketMail.com set up a free mobile e-mail service for her. KOA campgrounds heard about her trip, and sent her vouchers good at their sites across the country. And the Polycystic Kidney Research Foundation helps subsidize her travels. Cecilia said she feels blessed almost every time she reaches out for others.

``I want to use my story until it can be used anymore,'' she said. ``Sometimes you get a chance to give back. Are you gonna do it or not?''

*To see where Cecilia is now and where she's going next, visit: www.driveathon.org *To learn more about PKD, visit the Polycystic Kidney Research Foundation's Web site at www.pkdcure.org

Kathleen_Gilligan.jpg (30356 bytes)Kathleen Gilligan is the manager of Promotion for The Spokesman-Review in Spokane, Wash. A true lover of words, she has worked at several Northwest newspapers as a reporter, columnist and editor. She shares her home with fiance Dan Coleman, and four dog-like cats: Blossom, Lily, Kung Pao and Angelo. Contact her at kathleeng@spokesman.com

  

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