By Barry Corbet

What's the best thing about aging? we asked. "That I've lived to be this old!" What's the worst thing about aging? "That I've lived to be this old!"

That's how one person sees it, at least. "It's an absolute kick to have reached 50," says June Price, who has spinal muscular atrophy. "I love the perspective aging provides."

Price is just one of 15 friends and relations we asked to tell us what it's like to age with a disability. They're all in their 50s or 60s and have a broad range of disabilities. There are, of course, many of us who are much more venerable, but it's the cusp, the threshold of aging we hope to examine.

What's the best thing about aging? "You're kidding, right?" says Nancy Frick, 55, who had polio 50 years ago. "Not one damn thing," says Sharon Wilkin, 57, a C5-6 quad since 1958. But others had kinder words.

What's best? "The simple fact that I'm doing it in a way not a whole lot different than my peers without a disability," says Larry Roffee, 51, an L1 para since 1970. "Riding around with my step-grandson on my lap," says Bob Samuels, 62, a quad from Guillain-Barré syndrome. "Consider the alternative," suggests Tom Connors, 59, a C4 quad for 41 years.

Jim Boen, 66, a C5-6 quad for 48 years, is grateful that society reduces its expectations for people of his age. Julie Madorsky, 53, appreciates--in a lukewarm fashion--that 52 years of post-polio living has forced her to find values outside of work. "But I still haven't figured out what they are," she admits.

What's the worst thing? Loss of function and independence, escalating costs and add-on problems like diabetes, arthritis, osteoporosis, torn-up shoulders, loss of sight and hearing, muscle weakness and skin breakdown. Then there are the ordinary things--but never ordinary if you've got them--like dental problems, weight gain, low energy, hypertension, poor circulation and a newfound vulnerability to the diseases of an aging society: cancer, heart disease and stroke.

What's worst? "The physical pieces I keep losing of myself," says Victoria Brown, 50, who has lived with a neuromuscular disease for 47 years. "Like with a jigsaw puzzle, I'm concerned there won't be enough to complete the picture."

"Loss of independence with astronomical costs," says Wilkin.

"Being a postmenopausal, disabled woman in a society that equates sexual attractiveness with youth, great bodies and physical fitness," says Jo D'Archangelis, 58, who has spinal muscular atrophy.

"I'm too young to be old!" says Madorsky. "I don't feel like I belong with retired people, but they are the only folks who match my activity and energy level."

"I had a pretty good life until I got PPS, as opposed to PMS," says Sheila Kletzky McCoy, who had polio in 1952. "Now I never know if I should take two aspirin and forget it or go to a doctor."

"I'm 55 and my body is 110," says Frick.

It's not just the physical stuff. Connors laments the loss of youth's optimism regarding attitude change. "I am so much wiser than I was back then," says Hugh Gallagher, 66, a post-polio para since 1952. "It's too bad my life is nearing its end just when I get smart."

Most of us are simply surprised to be so old and so alive. "I remember when my grandparents were my age," says Samuels. "They walked, but they were old folks. I'm not like them. I'm an active guy despite the wheels."

Losses and Gains

Everyone says they're more disabled now than 20 years ago, except Samuels (who hadn't yet acquired his disability), Roffee (who has reaped major benefits from exercise, good diet and lifestyle management) and Gallagher (who flatly claims he's less disabled). This, Gallagher says, is no medical miracle, but the result of switching from a manual to a power chair, and from an automobile to a van that he drives from his chair.

"I'm more independent than I ever was in the manual," he says. "Then I needed help with the house, the dog, the groceries and travel. Now that I am powered I can go to the grocery just like all those walking people and just as easily." And because he stopped drinking and lost a lot of weight, he now finds transfers easier.

This is a recurrent theme: While most of us fought tooth and nail against the need for power chairs, scooters, vans and an assortment of lifts, these are the things that have set us free. You can argue that increased mobility is not the same as decreased disability, but it's what you feel that counts.

We asked if life, from a physical perspective, has gotten easier or harder during the last 10 years. Not surprisingly, most say it has gotten harder. Fatigue. New pain. Mobility limitations. "I'm getting older, dammit!" says Frick, no doubt speaking for many.

Yet Connors says life got physically easier once he identified chronic bladder infection as the underlying cause of his autonomic dysreflexia, and Samuels is again a holdout. He says he has more hand function now than he had 10 years ago.

D'Archangelis says that her decreasing stamina and energy have made life harder, yet surrendering selected tasks to others has spared her a lot of exhaustion and frustration.

The picture tilted sharply when we asked if, psychologically speaking, life is easier or harder. Most say life is now easier. Several say much easier, much better and happier. What accounts for the change? "Technology, greater access and attendant care have put me on a more level playing field," says Price. "I'm less alienated, less ostracized."

"I live more comfortably with my disability per se than I ever have before," says D'Archangelis, "and I've even learned at times to flaunt it--this is me, blonde hair, blue eyes, sexy, sinuous, C-shaped, ensconced in a power chair and, in my humble opinion, not half bad." And she's found work that she finds fulfilling.

"There's less work and social pressure," says Boen. "My children are grown up."

"I've lost all the stupid rage," says Tom Deniston, a C6 quad since 1969.

Samuels says life's easier now because he ended a bitter marriage and now enjoys a loving and supportive relationship. Roffee revels in a good marriage, a good job and good health.

"There are some incredibly beautiful things that come with age," confirms Dorene Frost, 61, who has multiple sclerosis. "Grandchildren, for one."

Frick says life is harder: "Over time, life sends many curveballs your way; some of them smack you in the head." But it's also easier. "If you receive enough smacks upside the head, you either develop a concussion or you figure out how to get your head around the facts of your situation."

Sharon Wilkin is similarly ambivalent: "After I worked through the devastating psychological trauma of losing my independence two years ago and adjusted my life situation with human and technological assistance, on a scale of one to 10 I'd rate my contentment level at nine-plus." Why on earth? "You know me. Pollyanna. I make myself happy."

It's a useful trick. Frick says she, too, stays happy. "Whatever happens to me, I grieve or I enjoy thoroughly and then I get on with my life."

Yet McCoy says life has gotten psychologically harder: "Depression is never far away," she says, "and anxiety attacks are new." Even so, she says, "I am more at peace with myself and who I am than ever before." Frost has been stressed by a dissolving marriage and Madorsky dislikes withdrawing from her professional duties. "I no longer feel like a contributing member of society," she says. "I used to put in 15-hour days as a physician, wife and mother. Now I'm mostly sedentary."

"I worry a lot," says Linda Burgess, 54, who has limb-girdle muscular dystrophy. "I feel insecure physically and emotionally."

"I worry about what will become of me when my husband dies," says Madorsky, "or what might happen if I were to develop any other unforeseen medical problems."

D'Archangelis notes that loneliness acquires a sharper edge, not softer, as she ages, and Boen, who says life overall is easier, admits to a loss of tolerance for stress and a sense of being psychologically fragile.

Several people say it's difficult to separate the effects of aging from the effects of their disabilities. "If I could just put the aging crap in one pile and the crip crap in another pile, my life would be a breeze," says McCoy.

Almost everyone says they have bought new mobility equipment. Most have graduated to power chairs during the last 10 years, and more than half now drive vans from their power chairs. Yet Roffee still drives his beloved Jeep, admitting the absurdity; Deniston still rides his sidecar-equipped motorcycle and says it's a hoot.

It's much the same with attendant care. Most have either hired their first PCAs during the last 10 years or increased their hours of attendant care. Sharon Wilkin, a quad with 35 years of total independence under her belt, now needs someone to stay overnight. This is a kind of change we don't accept gracefully.

"Dependency is hell," says Price, "After 51 years, I still resent that I have to have someone wipe my butt."

"I don't do this dependency well," says McCoy, "but I'm learning. The respect I've always had for quads has changed--I now think of them as gods. Without their example, I would not be as independent as I am."

What about money? Are people confident in their ability to finance their future? "Absolutely not," says Burgess. "Is anyone?" asks McCoy. "It's a little iffy," says Connors. Seven have full confidence in their financial security, and four are confident their Social Security benefits will see them through as long as the taxpayers don't turn sour. One says it's no problem at all because she expects to be gone. "Believe me," she says, "it's a big load off my mind." Two enjoy full service-connected disability benefits, and both say they have made all the difference. And it's interesting that people relying on Social Security seem at least as confident as those investing in a flighty stock market.

Life's Lessons

In hindsight, we asked, what have you learned from maturity? Would you have done anything differently in years past to protect your health now?

"Hell yeah," says Connors. "I thought I was going to die at 30. I lived, drank, partied and pushed my body assuming this to be so. Imagine my surprise."

Frick climbed stairs throughout college and graduate school, and then again in her first house and at work. "I so wanted to be accepted as one of the regular kids," she says, "so I climbed Mount Everest over and over. I didn't know the toll it would take, and no one else did either. I would like to have all those stairways back."

"I should have realized I was not some kind of superwoman," says McCoy. "I didn't need to do all the housework if I was going to work 40-hour weeks."

Price points out that we are not immune to the traditional problems of aging such as menopause, cancer, osteoporosis and arthritis. "Don't ignore these health concerns as you deal with those related to your disability," she cautions.

Several people wish they had wised up earlier about smoking and excessive drinking. D'Archangelis wishes she had started a regime of range-of-motion exercises early in life so she wouldn't feel as if she's "curling into a tight little ball of flesh," and Brown and Deniston both think they could have done with fewer surgeries.

Overall, most look back on their lives with real satisfaction and even a sense of good fortune. Upon reflection, Deniston says he's done just fine compared to his peers of 30 years ago, all Air Force flyboys. "All made colonel, a handful made brigadier general, a few made major general, a couple were lieutenant generals and one made four stars," he recalls. "Looking back at all those folks today, they're retired but scrambling at a second career to make ends meet. It appears I got the long end of the stick."

"Although I grew up believing all the expectations that everyone has--such as marriage, a job and a home--were not intended for me," says Frick, "my life experience has proven I was wrong. My life has been, and I expect it always to be, exciting and interesting."

"Things change," says Connors, "but at core, in concert with friends, one can make a hell of a life."

And of course we asked for hot tips, advice for the under-40 crowd who can only hope to age with their disabilities.

"Take care of your body as if you will live to 80," says Price. "You just might."

"Watch out," echoes Connors, "you may find you have outlived your doctors."

"Savor the irony of it all," says Gallagher. "Life is so odd. All my gay friends who were so young, vital and strong--who had the world and their lives before them--they're all dead. And here I am still going on and on and on, just like the Energizer bunny. Go figure." His advice? "Cut yourself some slack. Do not postpone pleasure."

"It is your life and you only get this one, so live it," says McCoy. "Do the best you can each day. And stop when it is your time to stop."

"Don't be stubborn and tough it out," says Samuels. "Use whatever makes your life easier--a van, power chair, Viagra or whatever. Your loved ones will thank you and so will your shoulders."

"When you feel like babying yourself, do it," says Brown. "Don't feel ashamed when you cry. It's a catharsis we all need from time to time."

"Try to find a peer group of younger people dealing with similar issues of functional loss," says Madorsky. "We can learn a lot from others about coping with physical and emotional losses."

"Save, save, save," counsels Wilkin. "Financial independence will allow you to maintain control and to make choices."

"Dye your hair, put on makeup, wear short skirts, flirt with the mail carrier and totally confuse ablebodied people," advises D'Archangelis. "Sexuality and disability are not oxymoronic."

Deniston cites George Burns. When asked to explain his longevity, Burns replied, "I make it a point to get up every morning."

Frost offers this thought: "Growing old is mandatory; growing up is optional."

And Gallagher, our philosopher, first quotes Bob Seger: "I wish I didn't know now what I didn't know then." And then Voltaire: "Before 40, conquer the world. After 40, tend your garden." Back then, Gallagher notes, 40 was older than it is today.

Aging With a Disability: What's Been Learned? By Bryan J. Kemp, Ph.D. For the first time in history, people who have experienced spinal-cord injuries, polio, cerebral palsy, strokes and rheumatoid arthritis are living nearly normal life spans. Like their peers without disabilities, they go through both the positive and negative aspects of aging. Some of the positive aspects include retirement, participation in leisure activities and visits with grandchildren. However, research centers such as those at Rancho Los Amigos Medical Center in Downey, Calif., have accumulated evidence indicating that for a great many people, aging with a disability is accompanied by numerous problems that usually do not occur until 10 to 15 years later in nondisabled persons. Some of what has been discovered, and what can be done about it, is listed below. Medical Problems: For reasons that are still not well understood, individuals with disabling conditions are at heightened risk of new medical problems as they age. Compared to the national average for nondisabled persons, people with disabling conditions have three to four times as many additional health problems. The most common problems are high blood pressure, diabetes, high cholesterol, obesity, respiratory conditions, loss of bone mineral and thyroid disorders. Many people do not know they have these problems, often because they don't have a primary care doctor to monitor their health. Some impairments appear to be linked to certain medical conditions at even higher rates. People with spinal cord injuries develop diabetes at nearly four times the rate of nondisabled persons. Those with cerebral palsy have many times the number of fractures per year compared to their nondisabled counterparts. The most important thing consumers can do about this is to have yearly examinations by a primary care doctor--an internist or family physician--who is committed to their care. Functional Problems: The most common complaint of people aging with disabilities is a complex of fatigue, new weakness and pain. There is no single explanation for these problems. This complex occurs across all impairments in anywhere from 25 percent to 80 percent of people studied. These symptoms often progress and become severe enough to affect work, social activities and the ability to do household or self-care activities. It is important to seek out medical/therapy intervention to treat or accommodate these changes. The recommended treatment for these symptoms is to do less, not to try to work through them. Use of additional assistive equipment or devices can also help. For changes that impact work, job accommodations are usually helpful and most employers and coworkers are willing to make changes. Psychological Changes: The biggest psychosocial issues are maintenance of quality of life and the impact of changes in health on the person's family. For most people aging with a disability, the longer they live with it, the more satisfying life becomes. High life satisfaction appears to relate to being able to maintain valued activities as one ages. For many people, changes in health or functioning lead to episodes of depression. Depression affects 15 to 40 percent of people aging with disability, compared with 5 to 10 percent of people without disabilities. Depression is a very treatable disorder. Prolonged changes in mood, outlook, sleeping or behavior should be brought to the attention of a doctor. Family members and other care providers need to anticipate these multiple changes and plan for them. Increasing needs for help will take additional time and resources. Bryan Kemp, Ph.D., is director of the Rehabilitation Research and Training Center on Aging with Spinal Cord Injury at Rancho Los Amigos Medical Center, Downey, Calif.

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