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Caregiving

By Barbara J. Anderson

IN MEMORIAM: Delta Captain James Stallworth 5-9-1952 to 6-16-2003

I would like to write an article about the trials and tribulations (the sheer hell) of being the caregiver for a chronically ill husband, but, unfortunately, the need to express my story of the often maddeningly frustrating existence of an “instant, but untrained nurse” has been eclipsed by the recent death of my husband of 21 years and best friend of 35 years. Moaning and groaning in a humorous vein just wouldn’t be appropriate, would it? I just can’t complain about anything I did anymore because I only wish I could have done far more.

I met my husband Jim Stallworth in January of 1969 in study hall during my first day of school in a new town after having been uprooted half way through 11th grade from southern Georgia to the frozen tundra of Doylestown, Pennsylvania. Study hall was the last class of the day, and I realized I didn’t know where I was. I asked this guy – Jim – how I would get to my home. He introduced me to a group of girls, who are now mature women and lifelong friends, and those girls took me home. After a while, Jim started taking me home. Once I insulted Jim (I have always had a big mouth that never counts to 10), and he made me walk home for several miles through ice and snow in a mini skirt. His friend Andy was in the car, but none of us remembers what I said, and now we never will. I’ve always feared I said something racially offensive (Jim was a black American), but we will never know. We didn’t speak for ages (a few days), and our Latin teacher Mrs. Bream was so distressed that she somehow managed to make us salvage our friendship. She knew Jim would never pass Latin without my help.

Fourteen years later at the age of 29, I went to the Bahamas and, during this period of intense reflection, I decided it was time to get married. Who was the most honorable person I knew? Jim! That was January of 1982, and we married June 19, 1982. We even managed to put in the time to attend classes with the priest who married us. When the priest asked Jim why one would have children, he answered, “You need someone to mow the grass.” Subsequently, we proceeded to have Andy, Greg, and Sarah, none of whom has ever mowed any lawn, let alone ours, and a great deal of fun.

In 1990, Jim was looking bad – grey and thin. He had scleroderma. What is scleroderma? This is a chronic autoimmune disease of the connective tissue generally classified as one of the rheumatic diseases, and it is also called systemic sclerosis. This insidious disease may have visible symptoms, such as when the skin is affected by hardening, or it can be invisible when “only” the internal organs are involved. This disease is different for each of its victims. Some people experience mild symptoms; some develop life threatening disorders. Another terrible facet of this disease is that it can be very hard to diagnose because its symptoms often are those associated with some of many other diseases. In Jim’s case, his skin didn’t harden; his lungs did, and, at first, his doctors thought he had pneumonia, but he kept flying for Delta until February 2001. Heaven only knows how he managed it! Now, Jim lived to fly. He learned to fly as a kid at the Doylestown airport, went into the Air Force, and then flew for Delta from 1979 on. What were his hobbies? He took his sons to the local airport to fly his little Bonanza. Being grounded and put on oxygen took his vital, happy spirit from him. He began to live for a lung transplant so that he could fly again for Delta and “be ready when you are.”

The lung came on February 10, 2003 at Johns Hopkins in Baltimore, thanks both to the extreme graciousness of the parents of a 17 year old boy who died and to his Medical University of South Carolina pulmonologist Charlie Strange who fought for two years to get Jim a transplant. Everything was wonderful! He could breathe! He knew he would fly again. They had the technology at Johns Hopkins, and he would be the true bionic man.

He came back to Charleston to watch his son Greg graduate from high school on May 25. He died on June 16 when previously undetected cancer took him over completely and with speed far faster than that of the jets he flew.

At 747 am of the 16th, my children, my mother, and I gathered to take him off of life support. He flew back into the sky very quickly and quietly. He is now soaring again.

What did I put up with? An honorable, decent, and loving man who was, very understandably, very grumpy because of the overwhelming frustration and anger he felt that he could no longer control his destiny. I had his love, along with that anger that only can be vented privately upon one’s soulmate. Caregiving seemed like hell at times, but now I know better – not being able to give help and aid anymore is the true hell.

Let us all try to put a stop to this disease. Find out more at www.scleroderma.org or at 1-800-722-HOPE, but please, donate your time and money to The Scleroderma Foundation.

Call the 800 number, and the foundation will advise you of how your time and funds can be used best. Thank you. Let us hope that wonderful people like Jim Stallworth who die from this disease, but fight it with all of their mental and physical resources, can inspire each of us to help to work to wipe out this disease.

2andersonb@citadel.edu