Dancing Despite Disabilities

Watching her shimmy in a beautiful sequined belly dance costume, no one would ever guess that Coastside resident Karin Dickinson, 24, has chronic hip pain.

Dickinson’s hip became dislocated when she was 19; this bright energetic young woman occasionally uses a cane to help her walk on the really bad days. But she doesn’t let it stop her from her passion: dancing.

“There’s no sense in letting an old injury prevent me from doing what I love. There are certain kinds of movements and steps I can no longer do, but I compensate by doing the moves I can do really well,” says Dickinson. 

Maybe she learned this perseverance from her dance teacher of the last 10 years, another Half Moon Bay resident, Betsey Flood, who dances under the stage name “Helwa”  (Arabic for “beautiful”). A few years ago she developed chronic nausea and lost 30 pounds. She went to many doctors and specialists seeking answers; after many tests no cause for her nausea was found. Sometimes it is suggested that people with chronic pain or illness should seek therapy if no physical cause can be determined. Not being believed is one of the hardest issues those with a chronic hidden disability face. It’s even worse when your loved ones wonder if you are faking it or trying to get attention. 

Fortunately for Flood and her aspiring students, seeking the help of a therapist turned out to be the best possible move, as the therapist immediately asked her to keep a detailed food diary. Pretty soon it was determined she had developed a food sensitivity to garlic, onions, spices and a host of other foods, and immediately after removing those foods from her diet, Betsey began to regain the lost weight and recover. She feels she literally got her life back thanks to a compassionate mental health professional, who listened to and believed her.

Despite all the nausea, Flood continued to dance and teach students. She says, “You don’t give up living because of chronic illness; there’s still a lot to be enjoyed. Your life changes, but there are still many moments that are meaningful and joyous despite what you’re going through.” This is a mantra understood by many people living with disabilities. 

Hidden disabilities, chronic illness and pain are one of the most serious problems our society faces. According to U.S. Census Bureau statistics from 2006, 15.1 percent of the population is disabled. Among people age 65 and over, 41 percent have a disability. In 2004, the Partnerships for Solutions Project at Johns Hopkins University estimated that by 2030, 50 percent of all Americans will have one or more chronic conditions.

Hidden disabilities don’t discriminate. We are all accustomed to thinking about disabilities when we see a wheelchair, walker, hearing aids, a seeing-eye dog, or cane. Hidden disabilities take a whole new level of consideration. My friend, Laura, who had chronic lupus, died at the age of 45 from cancer. Every time she visited me, Laura took the time to walk the length of Montara Beach – twice. Walking controlled some of the neuropathy pain in her legs and she dearly loved the beach.

Many people did not understand Laura’s condition. A few times I heard people suggest behind her back that she ought to be working because she appeared to be in good condition. Her sister once remarked to me that Laura did an excellent job of maintaining her health which was the most important job she had. As I found out more about her, I began to realize what a precious balancing act her health was — nutrition, medication, rest and exercise, while maintaining her typically optimistic mental health, and having time for friends, family, and personal interests. One misstep in any area led to a day in bed, flares, pain, or hospitalization.

One important thing to realize about people who have hidden disabilities, chronic pain or illness is that they are expending much more energy than a person without these conditions, or perhaps it’s just that their pool of energy is more limited. Just being with you, having lunch, attending a musical performance, listening, working, all while managing their health, requires much more energy and effort throughout the day. At the same time, they are smiling, laughing, talking, meeting deadlines, and aware of their dwindling energy supply.

On the Web site, ButYouDontLookSick.com, Christine Meserandino, author of “The Spoon Theory,” explains her experience of life with a chronic hidden disability. While having lunch with a friend who really wants to understand Christine’s life with lupus, she gathers up all the spoons she can reach and gives them to her friend – 12 in all. As her friend recites all the activities of the day, Christine takes a spoon away from her, reminding her she has to get through the whole day. Bathing, dressing, eating breakfast – now three spoons are gone; standing on a train, skipping lunch, working too long, commuting, errands all cost additional spoons.

When the spoons are gone, perhaps you might borrow one from the next day, but that comes with a price, too. Energy is finite in all of us, but the amount available to a person living with a disability is often far less than healthy people have. Sure, your friend can go shopping with you, but she may pay the price in reduced energy for the next three days.

The stress, strain and extra energy required to cope with day-to-day life while being disabled is different. On top of that we know chronic pain causes depression which makes life even more difficult. Lastly, there’s a myriad of paperwork and phone calls required if the disability prevents the person from working. Filing a disability claim in California requires regular visits to a doctor and mailing timesheets every other week. Both the disabled person and their doctor will have to be on top of the paperwork if any disability income is to be paid. A permanently disabled person can expect their income to be limited to around $500 to $800 per month. Being disabled can thrust one into poverty pretty quickly. Poverty often leads to depression, and depression is known to be associated with compromises to one’s health.

I recently made more than 10 calls in a single day to the State EDD office, which handles both unemployment and disability claims. I called at various times throughout the day regarding a disability question. There was a long pre-recorded process of punching in Social Security numbers and other data just to be told the maximum number of people were on hold, and I was then disconnected by the system. When I was lucky enough to get into the cue of waiting callers, I was on hold 17 minutes before a real person answered the line. I estimated that over the course of the day I spent two hours trying to get my disability question answered by the agency that oversees it.

Yet, in my work as a disability specialist, some of the most inspiring people I’ve ever met had chronic disabilities or pain, hidden or visible. An artist who painted nightly while in a wheelchair once told me that his life was a miracle and he drew great joy from painting the beauty in the world around him.

Chances are someone we love will become disabled. Taking the time to understand life through their eyes not only helps us better understand disabilities, it fills our hearts with grace and lets our spirits dance.

Karin Dickinson is the daughter of Laura Strom.

Laura Strom is a Licensed Marriage and Family Therapist (MFC 49174) practicing in Half Moon Bay. Her website is LauraCStrom.com.