June 18, 2006
Caregiver, cook, chauffer, breadwinner, Al Globus keeps his family running smoothly
Al Globus likes to joke that his marriage is "a one-night stand gone wrong."
He smiles when he says it, looking over at his wife of 21 years, who sits as still as granite in the wheelchair that has been part of her life for years now.
Bonnie Klein has multiple sclerosis, an autoimmune disease that attacks the central nervous system, and over time it has crept through her body so she can no longer jog, drive, cook or even hug her two kids.
So it has fallen on Al, a 54-year-old computer scientist at NASA and a musician with a sweet tenor voice, to fill in the blanks in their lives.
The father of two teenagers, he is cook, housecleaner, chauffeur and cheerleader for his family; a dad who not only coaches his son's soccer team, but recently attended five of the six performances of his daughter's high school play.
He's the kind of guy, says his friend, attorney Dana Scruggs, who deserves some kind of award.
Al sits backward in a kitchen chair in his family's neat Capitola home and shakes his head when he hears that.
"Exactly what else do you have to do that is more important?"
Symptoms creep in
Bonnie, a dark-haired 47-year-old with wide brown eyes, was already experiencing the first signs of MS when she met Al, even though she did not know it.
The athletic woman noticed that one leg didn't seem to work right sometimes, but before she could get to the doctor the symptoms disappeared.
After her daughter, Hannah, now 17, was born, the tiredness and awkwardness seemed to get worse but she attributed it to being a new mom. By the time her son, Ryan, now 14, was born, she could no longer ignore her clumsiness and the fact she'd had to stop jogging and then Jazzercise because her muscles didn't seem to work.
She finally went to a neurologist who took one look at her and said "It's either a brain tumor or MS," Bonnie remembers.
It turned out to be the disease that affects approximately 600 people in Santa Cruz and Monterey counties and 400,000 people across the U.S., with symptoms that range from fatigue and loss of balance, to complete paralysis.
Bonnie, who cannot move her arms and legs now and has trouble sitting up, has one of the most severe types of Multiple Sclerosis called secondary progressive MS.
It means her symptoms just keep getting worse.
The to-do lists Al writes for himself on Post-It notes litter the kitchen counter like purple and blue leaves.
There are haircuts, kids' bathrooms to clean, closet doors to fix.
"He does everything," says his daughter Hannah, a petite teenager of near-boundless energy. "Besides doing all the fatherly chores, he cooks, cleans and does the laundry and takes care of mom, and works, too.
"He keeps us afloat."
She and her brother, Ryan, tell stories of how he will make ice cream for them when they are in a bad mood; of how he'll fold their laundry when he sees they have lots of homework to do.
Then they tease him about the fact that Hannah has to pick out his clothes so he doesn't embarrass them, and when he mentions that he goes to the jetty at Capitola Beach to practice his vocal exercises, Ryan moans.
"Dad," says the tousle-haired boy, "please don't do that when any kids my age are around. Some of my friends know you."
Al, whose latest project is developing air traffic control software, smiles.
His life is not hard, says the man who is fascinated by space settlement and chairs a committee on the topic for the National Space Society.
He sneaks exercise into his 16-hour days, takes a couple of naps on the days when he doesn't have to drive to Mountain View to work and can multi-task with the best of them.
Bonnie, who uses a dot on her forehead to work her computer, orders the families groceries and clothes online, and is always there "to witness" the kids' achievements, he says.
He bristles at talk of their lives' frustrations. Life, he says, is about thinking of the things you can do; not the things you can't.
Hannah jumps up from the couch to head off for a night filled with school activities, asking if her dad could bring her dinner later.
"What do you want?" he asks.
"Anything," she says. "Food."
"OK" he says.
"He's just amazing," says Bonnie, whose hands lie delicately in her lap. "It is constant adjustment as I lose more capabilities. He's got unbelievable amounts of patience. He does everything with the kids."
From the hallway, Hannah calls out.
"And he still has a smile at the end of the day," she says.
Contact Peggy Townsendat firstname.lastname@example.org.