Susan Sholtes, L.C.S.W., graduate of the University of Chicago, 1980.
Executive Producer

Colleen Yosick

Mayda Rivera

Family therapist specializing in the psycho-social aspects of chronic medical illness, disabilities and loss.
Currently co-director of Celebrating Minds, a non-profit organization that supports students, parents and educators understanding the unique contribution each mind brings to the learning process. Private practice in Evanston, Ill., and faculty member of the Chicago Center for Family Health, affiliate of the University of Chicago.
Founder and member and of Caring Voices, a support group for those with illness and disabilities. Sholtes has lived since 1975 with Crohn’s disease, a genetic auto-immune illness that affects the intestines, eyes, joints and skin.

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In 1996 my four siblings and I were offered predictive genetic testing for a rare neurological disease called spinocerebellar ataxia type 1 (there are 26 types). At age 26, I learned I carried the gene and would become symptomatic within the next 10 years. The symptoms of the disease are imbalance, vertigo, poor hand movements and difficulty swallowing. It varies on its severity. My father, grandmother, some aunts and uncles and my brother also had this gene. I am now 36 years old and am just starting to show signs of the disease. I help myself through a regimen of balance work, exercise and speech therapy. I am a special education teacher and the mother of a wonderful 2-year-old boy. He helps me with my daily struggle to stay strong and remain hopeful.

Since 1980, I’ve worked in outpatient and inpatient mental health, including work with the developmentally disabled, terminally ill and children at risk. I was a clinical social worker and a community program coordinator at The Family Institute in Chicago, helping Spanish-speaking clients. In 1986 I was diagnosed with Crohn’s disease and in 1996 with MS (sometimes I call it BS). In July 2005 I finally had to stop working and go on disability—sooner than I planned, but later than I should have.

Then, after 30 years, I moved back to Puerto Rico to take care of my mother. She died of lung cancer last September (never smoked), and I was honored to be with her. Now I am trying to make my environment as comfortable as possible so I can use what energy I have to enjoy nature, friends and family. But no basking under a palm tree for me—the wheelchair doesn’t roll on the sand! Sometimes I have to struggle to get what I need from the medical system, and that is when I teeter-totter from despair and fear to optimism.

John M Sullivan

I’m 52 years old, a banker, philosopher and writer. I arrange financing for developers, manufacturers, and physicians. I work long hours so I’ve managed to integrate my passion (people) with my vocation to make the grueling schedule livable for me. Through my profession I have gotten to know some of the most wonderful, caring people, initially as clients and now as friends. I still find time to exercise, read and write. I’m working on a book about what makes a good life.

In 1995 I was diagnosed with a massive tumor at the base of the brain, which caused me to lose one-third of my peripheral vision. I had surgery at the Mayo Clinic, and I regained most of my sight, but because of the tumor’s location it was impossible to remove all of it. The tumor recurred in 1997 and I underwent gamma knife surgery, which was successful. Unfortunately, while radiation stopped the growth, it has lifelong side effects. It’s been a long road filled with pains and disappointment, but also with the kindness of others. I want to help others on this path.

I’m a 34-year-old divorcee, and I suffer from the hereditary neurological disease spinocerebellar ataxia type 2. I started becoming symptomatic in my early twenties. My grandfather had it and died ten years ago. My father has it, as well as a few of his brothers and sisters. I am the only grandchild with the disease. The progression of it is subtle, but since its onset EVERY SINGLE THING I do is affected, and every single day is tougher and tougher. Over time, I have lost the ability to do many things. I can no longer write, run, rollerblade, ride a bike or walk up or down stairs without holding tightly to the railing. My speech and balance are profoundly affected.

My life can be challenging at times (harder some days than others), but I try to remain upbeat and positive. I volunteer in accounting at a local hospital. I know some people have more on their plate than I do, and that is my primary motivation to make the most of every day.

I am a 50-year-old single mother of one, “retired” from a management position for a corporation in the food service industry. I was diagnosed six years ago with antitrypsin deficiency (alpha-1), a genetic disorder that can cause liver and lung disease in children and adults. It currently has no cure. The disease has affected my lungs, and it is progressive. Without treatment or a lung transplant, I was given approximately five years to live. The treatment--a weekly infusion of the enzyme my body doesn’t produce--is not a cure, but it slows the progress of the disease. To maintain the 23% lung function I have now, I must take this treatment for the rest of my life, or until a cure is found.

I used to enjoy physical activities like softball and volleyball, but by switching to music and writing, I am able to continue enjoying life. I’m also an avid believer that maintaining a positive attitude, improving eating habits and a daily exercise routine (I’ve taken up swimming) are the keys to staying healthy. I recently moved from Illinois to Georgia to be closer to my family, and I hope to continue my education at Georgia Southern University this fall, working toward a degree in psychology.

Myrna Weinman-NIA Instructor/
Mind-Body Healer

Olga Oranga
Film Director

I am a 29-year-old graduate student, pursuing a degree to become a physician assistant specializing in pain management. This is actually my second career. I was a professional ballet dancer until I suffered an injury to a nerve in my foot that ended my career. I had successful surgery to repair the nerve, but four days later I developed what is now called complex regional pain syndrome (CRPS). CRPS is a chronic neurological syndrome characterized by severe pain and autonomic dysfunction (e.g., sweating changes, vascular disturbances, and temperature abnormalities). I have lived with CRPS for 16 years, and I’ve been evaluated and treated by 15 major pain centers across the country.

In January of 2001, I became the first patient to have a motor cortex stimulator implanted in my brain to treat CRPS of the lower extremities. This groundbreaking surgery was performed at the Cleveland Clinic. As well as traditional and experimental medical modalities, I use a variety of methods to control my pain--biofeedback, acupuncture, massage, nutrition, and guided imagery. I enjoy singing and my two NewFoundland dogs.

I’ve been teaching NIA—a form of movement that combines the expressiveness of dance, the power of martial arts, and the wisdom of the healing arts—for eight years, and I’ve been working with Caring Voices for three years. In NIA, we are encouraged to adapt the form to different populations, and the way I’ve done that for them has been a process of development—seeing what the individuals in the group need and want, what works for them.

Through working with Caring Voices, I’ve learned the power of movement to heal. I realize now how little a movement can be—it doesn’t have to be big or difficult, the important thing is to be in your body and fully present, and the healing will happen. I’ve also learned to slow down and focus on the quality of the movement. The experience of NIA is subjective, it’s unique to each one who does it. So I’ve learned to honor the individual more, and not to try to fit anyone into a form, but to fit the form to them.

Through this kind of movement, individuals in the group have been able to hold off episodes in their illness, or to lessen the severity of symptoms. I’ve seen limited mobility, balance and equilibrium improve; and I’ve seen people use NIA as a catalyst to do other kinds of exercise and activities.

Olga Arango is an instructional designer for the Instructional Resources and Media Services Department of the School of the Art Institute of Chicago. A Fulbright Scholar, Olga is experienced in all aspects of filmmaking including directing, producing, editing, writing, and camera work. She has numerous films, videos, industrials, commercials and DVD’s to her credit. Among other projects, she has produced, coordinated and directed the acquisition of video footage for the Fountain Project at Millennium Park in Chicago; produced and directed a documentary for the University of Illinois; edited and created a DVD for Nationwide Insurance Company; directed educational documentaries for the Columbian Ministry of Development and the Ministry of Agriculture; and directed a series of documentaries about urban youth cultures in Bogota, Columbia.

Olga was the assistant director and cinematographer for the film In Passing, winner of the 1990 Illinois Film and Video Festival, as well as for From My Bed to the Street and A Imagen y Semejanza. She is currently working on the documentary film Why They Run. Olga offered her services at a discounted rate to make this film.