Andy Sando was an FOP patient who lived in St. Joseph, Michigan. He went to
college, worked at odd jobs, tried to make it as a cartoonist, and then studied
computer graphics and design. He lived independently with minimal help, and
coped without a wheelchair until he injured his leg, in 1985. Even then he
relied on a manual push chair only when necessary, and otherwise staunchly
defied his handicap, insisting on walking even if it wore him out. In April of
1988, however, Andy conceded that he was needlessly limiting himself by
refusing a power wheelchair. He went to Mary Free Bed, where the staff told him
about Nancy Whitmore. He was mildly interested in the prospect of meeting
someone else with FOP, he told me recently, but he was too busy with school and
"Tell him the truth," Nancy piped in.
"Well," Andy confessed, "St. Joe is a small town compared with someplace like
Philadelphia, but at least we have things to do. They told me there's this
woman up in northern Michigan, in the north woods. I figured she was probably
some frumpy old hick. Some lumberjack's daughter in a flannel shirt. All I
remembered from a trip my family took up there when I was little was that the
stores were full of moccasins. So I promptly forgot about Nancy."
Nancy, though, heard about Andy. She wrote, care of the rehabilitation center,
inviting him to join the IFOPA. A week later, in August of 1988, Andy
telephoned. They immediately realized that they shared many interests and
values. They began writing and calling each other once, twice, six times a
week. They decided to meet. In the second week of October, Andy and his mother
drove up to northern Michigan.
Nancy and Andy met a few more times that fall. In December they were married.
As they were pronounced man and wife, Andy's brother called, "Let's get him,
boys!" and several of Andy's friends grabbed the rigid groom, picked him up,
and tilted him sideways to kiss the bride. A photograph in the Sandos' wedding
album shows Andy nearly horizontal, with a huge grin on his face.
The Sandos' house and circumstances are models of how the severely handicapped
can live independently and with dignity. A legal settlement for Nancy's
accident provided money to modify the house she had shared with her sister's
family, now occupied by her, Andy, and their caregivers. Her complete
disability justified complete medical and personal care. The insurance company
offered to pay for a nursing home. Nancy successfully argued in favor of being
her own health-care provider, hiring and managing round-the-clock caregivers
who would tend to her needs in her own home. Health-care economics being what
they are now, both the company and Nancy got a good deal.
The Sandos call their house an "interconnected duplex." The nighttime caregiver
occupies the original house, while the Sandos live in a new addition. Ramps
lead to the front door and the back yard. To accommodate wheelchairs, the
addition has few halls, and all doors but the front one are pocket doors that
can be pushed open with one foot. The nucleus of the house is the Sandos'
bedroom, or "the room of many doors," with access to both sides of the house
and to the back garden. Two television sets let them watch the same program
while lying in bed, despite their different body positions. The bathroom
features a large hot tub to help ease the aches of FOP, with an electric hoist
and a sling to maneuver them into the tub. "No one but me holds the
control box when I'm in that lift," Nancy says. "I've learned."