As hard as it is for Denise and Tom Muller to talk about the future, one wonders how they manage to talk about the past.
Her head bald from chemotherapy, immense lumps of built-up fluid disfiguring her body, Denise Muller sits in her electric wheelchair in a little rectangle of winter sun in her living room, explaining how she lost her pelvis.
"My bones are like balsa wood," says the 56-year-old Dayton woman
Muller was born with the rare, severely painful "congenital hip dysplasia." She had her first operation at 3 years old.
After 22 operations, her hips have been reduced to a brittle junkyard of shard and surgical screws - a soup of broken bones. A life made livable only by high levels of morphine, methadone and her husband's love.
Denise shows an MRI rendering of the right side of her hip. The light yellow areas are bone fragments resembling a piece of moth-eaten cloth. Screws holding bone remnants together show up in gray. The head of one broken screw stands out among the pieces, floating freely in the build-up of fluid.
For one of Denise's operations, the surgeon used screws that were way too long.
"The screws broke through my vaginal wall," says Denise.
What's worse, the doctors kept insisting that everything was fine.
Her gynecologist disagreed. So then came the operation to cut off the ends of the screws.
Denise wipes away a stream of tears, her story just beginning.
After the screws, the Mullers got a lawyer, hoping not for economic retribution but simply to help pay for parts of the expensive procedures not covered by insurance.
"We won the case," says Denise. "But our lawyer ran off with the money."
Around that time, Denise shattered her femur "like a broomstick" after her doctor advised that she get up and move around a bit. Also, her left hip was now coming out of its socket. She ended up laying in bed for the next two years, unable to do anything.
For the next operation, she was given two options: Try another using the hip from a cadaver - or amputation.
"It was just so painful, I chose amputation," she recalls.
But the decision had already been made for her. Right before the scheduled procedure she hoped would give her some relief, she found a lump in her breast.
She reveals the quarter-size chemotherapy port on her chest. Then she shows an X-ray showing where the chemo tube had recently burst open inside her and the harsh medicine blackening the area around the leak.
"Sometimes I go out to the garage and cry," admits Tom.
Then they found another lump, this time in Denise's lymph node.
"Why me?" she wonders out loud. It's a question she can neither answer nor stop asking.
For more than 25 years, Denise's world has consisted of hospital beds, fluorescent lights, cream-colored walls, curtains, the smell of hand-sanitizer - and pain
"I would really like for something good to happen in my life," Denise says.
Her dream: To get a disabled-friendly van with hand controls so she can regain some of her life.
"If I make it," she says, qualifying the dream against her latest battle, worried what might possibly happen next.
At least there is one thing the Mullers do know about the future - that they are going to go belly-up financially.
"At least we can see that one coming," says Tom.
n Contact reporter Peter Thompson at pthompson@nevadaappeal.com or 881-1215.
You can help
To help Denise Muller with her dream for a disabled-friendly van or otherwise send support, an account has been opened at Nevada State Bank, Account No. 0530036235.