Kay Puckett remembers a friendship born of shared compassion and experience with CFS.
Personal Stories: Kay Puckett Honors a Friend Lost
By Kay Puckett
Let me tell you about my friend.
At one of my medical appointments, I told the nurse that it would be okay to give my name and number to anyone who had CFS. Not long after, he double-checked with me and then did just that.
So one fall day I returned a call from a woman named Helen, got directions and wound through cliff-hanging streets to find her house perched up a very long set of steps. I made it to the door, after several rest periods along the way, and our gentle friendship began. We couldn’t talk, e-mail or see one another often since we were both in energy conservation mode. But we understood each other . . . no need to explain.
Helen was a researcher and sought the best in treatment from well-known CFS resources. But the disease left her limp and thin, sick and depressed. She eventually got disability status, so she could stop working, but it was too late to be of much help in controlling the 20-plus years of damage from her long undiagnosed disease.
We shared support and information. She was the one who found some nutritional supplements I now use. She was the one who suggested the doctor I now see. We each knew the other was there for us.
Then one day I opened the newspaper and saw her picture and a death notice listing the cause as chronic fatigue syndrome. Her husband, who had tried so hard to be a helpmate, returned my tearful message. Sadness and feelings of failure weighed in his voice as he talked. “I need you to know,” he said, “that Helen killed herself.”
I’m one of the more fortunate people with CFS—diagnosed after only about a year of confusion and tests that showed nothing. In 1994 my alert physician recognized the symptoms and identified my CFS. I learned later that my supervisor went to bat for me with my private disability insurer so I could follow doctor’s orders and quit my much-loved but demanding work.
Helen had not been so fortunate with either her diagnosis or disability status.
As for me, everyone (including me) thought I would rest, perk up and soon be well. NOT. I spent most of four years in bed and now have learned to live with and carefully control this dastardly beast called CFS. But I’m still surprised at the intensity of fatigue, pain, disorientation and discouragement that follows activity. I sometimes think of myself as a fairy-tale pumpkin who turns into a person for a few hours, but there’s a clock ticking, ready to strike the witching hour and zap me back to the patch.
Still, I’m grateful that I used that fall day to meet Helen—grateful for her friendship, sad to have lost her and understanding of what brought her down.
Kay Puckett is now retired after becoming disabled with CFS in 1994. She is a Presbyterian minister and returned to work part time from 2000 to 2003, but relapsed and now stays close to home on her farm in southeast Ohio.
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