By Daniel J. Vance
“Rick” (not his real name) tells only medical professionals, close friends and family members about his “hidden” disability.
He has a well-paying job with a major financial company in Chicago. Seeing him on the street, you wouldn't know he was born with spina bifida and has had lifelong problems with incontinence.
The Spina Bifida Association website calls spina bifida, which affects about 70,000 Americans, “the most common permanently disabling birth defect.” It occurs in the first month of pregnancy when the spinal column doesn't fully close and usually leads to some type of permanent paralysis. In Rick's case, which doctors consider mild, the paralysis involved only his bladder and bowels.
“In elementary school I was fortunate the nurses were wonderful ladies,” said 28-year-old Rick in a telephone interview. “The head nurse kept my catheters and pads in her office in a special box. The box was padlocked, and I was the only one knowing the combination. Most kids were so involved in what was going on that they didn't even realize where I was.”
While his boy classmates were going to the restroom, Rick was using a catheter to urinate and replacing pads every three hours. No one at school ever knew of his incontinence problem except his teachers and nurses. When questioned, he simply told peers that he was going to the nurse's office for medication.
In first grade, he began wearing a “chiming” watch purchased by his mother to regularly remind him to “self-cath.”
“Then when I was in middle school my mother began putting a catheter in my wallet, and I would keep a backup catheter and pads in a fanny pack. Then I could use public restrooms along with everyone else,” he said.
Once able to use public bathrooms, he began feeling a lot more independent and self-confident. He soon became heavily involved in after-school activities, especially theater, in which he learned to build sets, perform, and stage manage and direct school productions.
He said, “In high school, my doctors said that aside from my family there was no reason anyone should know about it.”
Rick went on to graduate from a four-year college, and he and his wife have been married two years. He advised people recently becoming incontinent to be mindful of the time of day and adhere to a strict restroom regimen.
For more, see danieljvance.com. [This column made possible by a grant from Blue Valley Sod, www.bluevalleysod.com]