For more than 15 years I have been providing information and resources to people living with paralysis and their families. My work has been with the Paralysis Resource Center, a SCI website and for another non-profit whose focus was on spinal cord injury and disease. During these years, I have had the privilege of assisting over 1,000 families and individuals who face the daunting task of navigating and making sense of the world of paralysis. Each call and inquiry is unique and each one has made a permanent impact on my life.
I think of each call as a gift. Just imagine, someone sharing their deepest fears, worst nightmares with you---a complete stranger. Some people wonder why I consider this a “gift.” Well, to me, having a complete stranger putting trust and faith in me to help them---could I call it anything but a “gift?” Trust is formed, a personal connection is made and the goal is to help the caller advocate for themselves, to get the care needed and in many cases, simply to help their family member survive.
Every now and then a call comes in where I feel the pressure because it is literally life and death. Pat Durkin and his fiancée, Susan Crawford was one such call. I received an email about Pat soon after his beach accident in August 2009. While body surfing, a wave flipped Pat into a sandbar, leaving him a C2/3 quadriplegic. Pat was told that he would be dependent on a ventilator for the remainder of his life.
Pat had worked for 30+ years as a Federal employee and he found his benefits being denied and or severely limited. He had a strong advocate in his court with Sue. It was obvious how much she loved Pat and how determined she was to obtain the best and most appropriate care possible.
Pat was an excellent candidate for the Diaphragmatic Pacing System (DPS). Christopher Reeve was the 3rd patient to have this minimally invasive device implanted. It allows a person to be weaned from a vent for long periods of time and greatly improves a persons’ quality of life. Pat was at the Shepherd Center in Atlanta and the doctors recommended the procedure but it was denied by his insurance.
Sue came to me asking for guidance and advice. I walked her through an insurance appeal, but the DPS was once again denied. I suggested to Sue that she reach out to Congressman Chris Van Hollen’s office. Pat was a constituent and Congressman Van Hollen seemed the best place to start. The Congressman’s Health Care aide, Char was determined to help. When things seemed dark, Char kept perspective with, “We still have tomorrow.”. After many twists, turns, ups and downs and a doctor to doctor peer review, the DPS procedure was approved for Pat.
Sue was my contact during those long months to get Pat back into a condo of his own. She kept me updated on Pat’s progress and I frequented his Caringbridge blog. Through it all, Pat had an impressive attitude and a “life is good” attitude. Photos always showed an ear to ear grin. When Pat started posting on his blog, he talked about his progress and always expressed gratitude for how far he had come. Gradually I head from Sue less and less as Pat’s life settled into a groove.
One morning I had a voice message from Pat wanting to talk to me. His voice was strong and upbeat. Finally, after 18 months, Pat and I were going to talk. One thing Pat expressed was a desire to meet and thank the folks who had helped, especially Congressman Van Hollen. In late May, an appointment was set and I was lucky enough to get to meet both Sue and Pat along with Congressman Van Hollen and Char. It is rare that I get to meet the people I assist face-to-face and that meeting was a high point for each of us. I took away a positive energy from Pat and Sue, but most importantly the knowledge that you can make a difference.
Pat and Sue have shared two brief emails in our “Making a Difference” blog. I thought it was important to share my side as well. Working together, it is possible to make a difference.
When all seems lost, push back a bit harder and move it up a notch. If it means calling your Congressman or Senator, give it a shot—you have nothing to loose. Sometimes it takes a team. Pat had many others behind the scene. To Michael, Wes, Nancy and Frankie----thank you for being our behind the scenes crew. Pat and Sue, thank you for the gift of sharing your lives.
