ATLANTA -- Stress is an everyday part of Jenny Langley's life, as it is yours, but with some twists.
First, you notice how pretty she is; then you think how nifty the bow tie around her neck is. And then you notice it's not a bow tie but the dressing around the hole in her throat. As long as she lives, the dressing and a tube will be there too, 12 puffs of air per minute forced through it by a 12-by-18-inch pump called a ventilator.
Jenny, at 27, has had two disasters in life. In 1976 she dived from an oak tree into a south Georgia swimming hole, didn't hit a thing but the water, and broke her neck at the fifth and sixth cervical vertebrae. Life takes on a few more complexities when suddenly you're paralyzed from the waist down, but Jenny and her family lived well with the stress her new dependency on others brought. Jenny graduated from high school, attended an independent living program at Warm Springs, Ga. (where Franklin Delano Roosevelt enjoyed therapy for his disability), and enrolled in college.
"Jenny," says her sister, Sheryl Langley, "was always on the go back then," a truly independent person. She loved concerts and boys and her job with her father's construction company.
And then the Langley family experienced its second accident. Jenny, driving her specially equipped wheelchair van, swerved to avoid hitting a deer, lost control of the van and flipped over. The chair broke from its sturdy clamps, Jenny hit her head, and her spine broke again, this time at "C 1."
In the vernacular of spinal injuries, "C 1" is catastrophic, as bad as it gets. Quadriplegics can't breathe on their own or feel a thing below the neck. And the simplest need, like coughing, becomes a motorized task or a chore for others -- some routine, others terrifying.
Put yourself in Jenny's place for a moment. Want to shift your body a little, just an inch or so? "High quads" do it by "puff and sip." Sip real hard on the bassoon-like reed attached to the hard plastic tube just in front of your mouth and your wheelchair reclines, a movement that shifts your body. Every hour of every day you must do this. At night, if you're Jenny, your mother wakes you every three hours to turn you over. Ready to sit up? Blow on the mouthpiece. Does your head itch? Oddly enough, an itch can be a pleasant sensation if it's one of the few physical sensations remaining. But if you need a scratch, puff and the wheelchair moves quietly forward; sip lightly, it turns left, and eventually someone down the hall will scratch for you.
Need to cough? You never will, but, boy do you learn about "quad coughs." Several times each day, a person will make you cough, pounding your chest to loosen up any congestion there; and while they're at it, why not suction your tracheotomy tube a little to clear up that respiratory passage. If you're Jenny, you say thank you every time it's done.
Need a bath? I would think that raises your stress level. To bathe properly, you have to have your ventilator unhooked, the tube removed from your throat. For a moment, no air is forced into your lungs as the tube is replaced by a shorter one hanging from a manual resuscitator bag. While you shower, the person beside you breathes for you manually, squeezing the football-shaped bag very hard with both hands.
I visited Jenny not long ago at the Shepherd Spinal Center in Atlanta, one of the premier spinal cord injury hospitals in the world. Quite frankly, after having simply heard about her condition, I was prepared to pity this person and, I guess, the 85,000 other people with severe spinal disabilities in the country. Who would want to live like that? Isn't that what you've thought, too, about people with severe disabilities?
The feeling didn't change when I first walked into the clinic, either. Wheelchairs occupied mostly by young people whose arms and legs are strapped down is a disconcerting sight. I walked to Jenny's room with few side glances at those around me. My thoughts were on the lost promise each person seemed to represent.
Jenny wasn't having any such thoughts. Earlier her boyfriend had been in to visit. They've been going together for years, and though she can't feel the touch of his hand, she can see it. A paraplegic friend was in the room visiting too, joking and laughing. Talking books (Stephen King is her favorite) lay on a bedside table right beside a speakerphone that connects Jenny to the world.
Jenny's mind was on a very typical thing for a young person who wants to lead a more independent life. She's looking for a roommate or two to share a house. "I want," she says, "to be with young people." Her sentences are stop-and-go between the ventilator's breaths of air. "I want to have friends over. And my boyfriend. And to stay up at night and watch David Letterman."
Jenny smiles at every question I ask her until we talk about the impact her difficulties have had on her family. The smile is there but tighter, probably because the question brings to mind their sacrifices. Medical bills exhausted two long-term medical policies, one for catastrophic illness, and then bankrupted her family. Her parents even lost their home when it was seized and auctioned on the courthouse steps to pay medical bills. The Langley family's love, support and optimism have never faltered. But now Jenny and her family face the question of how to take care of her. They certainly can't do so in their one-bedroom apartment.
Doesn't Jenny need to be in a hospital anyway? "Jenny," says Martha Foster, the Shepherd Spinal Center's information officer, "isn't sick. She doesn't really need medical care, she simply needs help in the everyday activities of living." That's true of most people with severe disabilities in this country.
Our medical system, however, isn't set up to deal very well with people like Jenny. "The entire health care system is based on the concept that people get sick or die," says Pat Puckett, an advocate for the disabled and consultant to the Shepherd Center. The system, for instance, will contribute $49 of the $400-a-day cost of nursing-home care for Jenny. Currently the state pays about a tenth of the cost of her care at the Shepherd Center; the center absorbs the rest. But in Georgia, as in many other states, the medical system won't pay for what is known as "independent living arrangements," a care option that would cost about $150 per day.
That's why the Shepherd Center has set aside funds for a one-year experiment on the independent living capability of Jenny and one or two other young people with severe disabilities. They'll help each other and share an attendant.
The money's there for only one year, however. If the system isn't changed by then, Jenny Langley's options become very limited. No nursing home in Georgia will accept her. (Why should they? Each day of care would cost them $350.) The Shepherd Spinal Center, at some point, will have to make the decision about whether the $300,000 a year it spends to maintain Jenny should be spent on people who need the specialized, rehabilitative treatment more than she does now. There may be no place to go.
"I've always been one just to take things as they come," Jenny said when I asked her if she's worried. "I believe there's a purpose to this." That's why she's testifying before legislative groups around the state. That's why she's interviewing roommates. That's why she's working with the center in developing the independent living plan and testing it. That's why she's getting on with her life -- working daily, like all of us, to make it the fullest, the most positive possible, in spite of the stresses and uncertainties.
Jenny is a model for all of us in how to live and perhaps a model for a solution to this problem. Her life as well as her voice gives a convincing demonstration that having a tragedy doesn't mean you have to lead a tragic life.