Jon's Story

Published September 2016

The Faces and Facts of Disability / Stories / Jon's Story

“I have never asked for help, but man did I need it now.”

That’s what Jon says today about the painful neurological condition — called complex regional pain syndrome — that redefined his life at age 51. Before his illness, he could sleep normally, easily digest food, and enjoy an active lifestyle that included working, nature walks with his wife, and a passion for golf.

When he tries to sleep now, it feels like something is twisting his bones. During the day, even the lightest touch of his clothes against his skin causes an acute burning and pins-and-needles sensation. Other people with the syndrome have described this feeling as a “red hot poker.” A secondary condition prevents his stomach from emptying properly.

Worst of all are the severe headaches and facial pain he has come to expect as part of his new “normal.” Leisurely strolls in the park and perfecting his golf swing are no longer a possibility for him, let alone working.

After paying into Social Security throughout his working life, he’s grateful Social Security is there for him when he needs it, and will continue to be there during this challenging phase of his life.

Like many who live with this disease, Jon’s symptoms began after routine surgery. He’ll never forget the date in 2012 that an operation to correct popping in his shoulder altered his future irrevocably.

At first when he returned home following the procedure, everything seemed fine. Shortly into his convalescence, his right hand became swollen and purple. Most distressing, he had never experienced such intense pain.

Rather than going away as his doctor predicted, these symptoms quickly spread to his neck and face. Within a month, he received his neurological diagnosis. More than 4 years later, the condition now affects his whole body and shows no signs of retreating.

Jon is coping with the help of pain medications and physical therapy. Thanks to his monthly Social Security disability check, money is less of a worry. “I have to tell you it wasn’t an easy road,” he writes, “but once I got the letter saying I was approved for Social Security, all I could do was cry. I was really grateful, and I still am to this day.”