Cyndee was just like many high school seniors. She was attractive, had many friends, enjoyed music, was an accomplished athlete in several sports, a member of the National Honor Society, a dancer, a volunteer at a local hospital, and she had a goal of getting a college degree. In other words, she had all the energy and vitality in the world, and was looking for a good place to expend it. But, this all changed suddenly and without warning.

I was 9 years old when my 19-year-old sister, Cyndee, decided to buy her first bikini. Little did she know that she would never be able to wear it to the beach and show off her hourglass figure. It was not many days afterward that she developed a 104 degree fever, became weak, and complained of joint pain in her hips severe enough to affect her walking. Since her fever and joint pain did not respond to conservative treatment, her doctor decided to hospitalize her for further evaluation.

This was the first of many hospitalizations, misdiagnoses (including psychiatric), and treatments, which my sister and our family endured. Over the next several months, Cyndee spent the majority of the time in the hospital being questioned, tested, re-questioned, and re-tested. My father, the chairman of the Department of Family Practice, at "my sister's hospital", was keeping close watch over her and her doctors during the day, and then he would come home at night to pick up my mother so they could both visit Cyndee. This left my two younger brothers and me in the care of our 18-year-old sister, since my brothers and I were too young to go up on the hospital ward.

As a child, I just knew that the doctors must have known what was wrong with her. After all, they were doctors and doctors, by definition, knew everything about the human body and disease, didn't they? I mean there was no way that Cyndee could have had an incurable or fatal disease, was there? Doctors knew how to cure just about every disease, and besides, those kinds of diseases affected other kids' sisters, not mine. Even if she did have one of "those diseases", the doctors wouldn't let Cyndee die . . . they would figure out a cure . . . I knew they would.

Growing up, Cyndee and I were very close. She was a role model for me in many ways. She was always immaculately groomed and was always responsible for helping me get ready for church. As a result, I was pretty well dressed and groomed for my age, and this has continued even today, much to the efforts of Cyndee in my early days. As she practiced her piano each day for an hour, and filled our home with music, I was the beneficiary of her example of discipline, commitment, and love for music. Today, my children benefit from the music, which plays in my home. My hunger for learning was influenced by her evening study sessions with her best friend at our dining room table. Cyndee influenced even my athletic ability.

Sports were a major part of my family's activities. My father had taught all five of his children to play badminton, baseball, bowling, gymnastics, pocket billiards, soccer, table tennis, and tennis and each of us competed in tournaments, meets, and leagues. Our weekends usually included some type of sports activity. We were either practicing or competing. One of the reasons we won so many trophies was that we were able to practice with and against each other.

I have fond memories of practicing sports with Cyndee. We spent countless hours playing table tennis as Cyndee smashed the ball past me. I used to watch enviously as Cyndee gracefully delivered her 10-pound bowling ball down the alley as she "rolled" to a 200+ average.

My family and I enjoyed watching and cheering each other on as much as we enjoyed competing. Cyndee had worked hard to become a contender for the 1968 US Olympic Gymnastics Team on the uneven parallel bars and we were all very proud of her. She had so many goals and had accomplished all of them to-date; she was a fierce competitor who always maintained her balance and poise. Our father had always told her that our last name meant "warrior" and that she should never quit until she reached her goal. It never crossed my mind that her goals would not all be realized. After all, she was young and healthy with many happy years ahead of her . . . until one day during her daily visits with Cyndee at the hospital, my mother noticed a rash on Cyndee's cheeks. More tests, new answers to old questions, but finally a definitive diagnosis.

Cyndee had systemic lupus erythematosus (SLE) and the medical books said she had a 10-year prognosis. At that time, there was very little known or understood about SLE and most of what was known was just being discovered. My parents were devastated at first, but after praying, their hope returned. They tried to hide their emotions and be strong when they brought Cyndee home, so that my brothers, and sister and I were not alarmed, but I sensed that something was being left unsaid. In fact, per my parents' request, Cyndee had not yet been told.

Even through some Herculean efforts from everybody to keep our "home sweet home", our home was not the same. My father went to work, but when he returned home, he would have piles of reading material, more than usual, with him. My mother would awaken early, care for Cyndee, and perform all her normal tasks, but she was quieter and more introspective. But Cyndee had changed the most.

Cyndee had changed physically, emotionally, and spiritually. Oral steroids and intravenous chemotherapy had transformed her bikini-ready body into a bruised and almost battered-appearing shell. Her hair had thinned or fallen out, yet she had a small, but noticeable amount of hair above her upper lip. Her arms and legs which previously had effortlessly tossed her in between the uneven parallel bars, now appeared to be thin appendages barely able to lift a cup to her mouth or to support her weight.

The usually gentle, poised lady without a hair out of place had now become anxious and hysterical about her physical condition and limited activity. She became depressed and would lock herself in her room for hours at a time. I could hear her crying from my side of the door, but somehow my cheeks were wet with tears. Whenever I was unsure of myself or felt anxious, Cyndee was always there for me. I felt helpless and frustrated. I wanted to help, but she would not, or was it could not, let me in. I knew she needed help on her side of the door, so I did the only thing I could.

I prayed. I prayed for the doctors and nurses that they might find a cure for SLE. I prayed for my parents that they might be strong to endure their pain, as they helped us endure ours. I prayed for Cyndee that her heart would be softened so she might find peace in this New World filled with countless questions with too few answers. I prayed for my brothers and sister that they might be successful in "getting through" to Cyndee. Finally, I prayed for me. I prayed that God would help me to become a doctor so someday I could help relieve my sister's suffering. With a child's faith, all my prayers were answered, except one. There still is no cure for SLE.

With time and after an emotional outburst by Cyndee, my father finally told her that she had SLE and that further outbursts might trigger an exacerbation. He showed her medical books describing what she could expect. Although the love and support of our whole family surrounded her . . .

Cyndee felt she was all alone. She made a sign for her desk, which read, "Only I have to live with SLE." At first, this hurt me deeply, since I could not understand why she felt that her suffering did not affect the rest of us. I didn't understand that she needed to dig deep within herself and draw upon the inner powers of her self-discipline, and determination which she had developed as an athlete, musician, volunteer, and scholar, to overcome her feelings of helplessness and hopelessness. Each morning and at times when she didn't feel so well, I would hear her "self-talk" or affirmations like, "Strong like bull!" or "I feel terrific!" but I wondered how long she could expect this to work or if it would work at all . . .

Well, after more than 32 years of "living with SLE" and probably tens of thousands of affirmations, Cyndee continues to be my "big sister" from whom I can continue to learn great things. Over these 32 years, not only has Cyndee had to overcome many physical and emotional struggles, but so have each of our family members. I, for one, can attest to the value of having faith, hope, and prayer in one's "medicine cabinet." The value of a caring support system including family, friends, doctors, nurses, pharmacists, clergy, social workers, and others in providing assistance at every turn has been shown to me time after time.

Although having suffered a couple of strokes, endured three hip replacements, and getting around in her Amigo (a motorized miniature wheelchair), Cyndee has been happily married for 20 years and has discovered line dancing which she does three times a week as what she calls an excellent "stress-buster".

What impact has Cyndee's chronic illness had on me? It has shown me that while one person may have "the disease," the entire family or support system is affected by "the illness." It takes more than science and medicine to make a person feel better. It may be a cliché, but it's true: "No one cares how much you know, until they first know how much you care." As a medical student, I have observed that some people die with a chronic illness while others live with a chronic illness. With God's help, and through Cyndee's living example, my patients will benefit through my efforts first "to seek to understand" and then "to be understood."

A senior medical student at the University of Illinois Medical School, Chicago, Illinois.

This story will be presented to the freshmen medical students during their "Essentials of Clinical Medicine" course, as well as to the general medical student body.

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