In Your Area
Connie and Jane, who have been matched in memory of Jane's husband, Sandy, share their thoughts about the Patient-Runner Connection program.
Sandy, Jane's husband, lost his life to liver disease.
Participation in the Patient-Runner Connection is usually thought to be between a patient who is currently battling liver disease and a runner. What were your initial thoughts when you found out that you were going to be matched with Jane and running in honor of her husband, Sandy?
Connie: I must admit that I was a bit surprised when I first heard about the nonconventional patient connection. I was thinking that I would be hearing firsthand about someone's health experience, and how liver disease was impacting their daily life. Talking with Jane, however, gave me a perspective and reminder that proved more valuable. Liver disease doesn't just affect people in isolation. Every person is part of a larger web--I'm a mother, daughter, wife, sister, aunt. And if someone I loved had liver disease, I wouldn't want to feel like I was on the "outside" of that--it would be very important to me to be recognized as part of that community and its support, since liver disease would be so much a part of my life, too. When someone is affected by a disease, it's a whole village that's affected by the disease, and each person has a story to share.
To be honest, I think Jane's story was more grounding for me than a patient that is actively undergoing treatment. I think that looking at Jane's story had more significance in some ways than having been matched with a patient directly. It's one thing to fight a disease. It's another thing entirely to watch someone you love fight a disease, and feel helpless and want nothing more than to help that person. And even worse to try to find a way to go on living without them.
Sadly, Sandy (Jane's husband) lost his life to liver disease. That's important for us to remember, and it's a big motivator for me. Not every story has a happy ending, not every patient defeats their liver disease. There's work to be done. Wonderful, loving and loved people lose their lives, and that makes it even more urgent for us to push and raise funding for real, life-saving research. And what a great way to honor someone's memory, making sure that their suffering wasn't in vain, but inspired people to care, and push to raise money so that others may be saved, and others will be spared the same fate. Talking with Jane, I also realized that raising liver disease awareness is important, too, so that people don't have to face social stigma and feel uncomfortable when identifying liver disease--helping to counter these stereotypes and improving knowledge and compassion within our own communities is a wonderful thing our team does, in addition to raising money.
You both have families, busy work and social schedules and don’t live close in vicinity, so how did you find the time to form a relationship with each other?
Jane: I think we did this well. Most of our communication was through email. She has a very busy job and a young son so I wanted to make it convenient for her. We began by telling each other about our lives and our connection to ALF. I did want to meet in person so offered to take her to lunch at a restaurant north of Boston near where she works. It was the most delightful lunch and I left feeling so grateful for meeting her.
Connie: I don't think I have had many lunches in my life that meant as much to me as my time with Jane. It was one of the highlights of my entire season. She shared Sandy's story with me, as well as her own, and gave me a window into the impact on her family. She would send me supportive emails, and seemed to know times when they would be most needed.
As a patient or loved one, it’s not always easy to express your gratitude for the incredible endeavor that your runner match is taking on in your or your loved one’s honor. What is one way that you chose to show your thanks?
Jane: Connie’s son has a lot in common with my youngest grandchild, including a love of Legos. He did some of her training runs with her so, after the race, I sent him a gift certificate to a store near their house that sells Legos. I knew he would like that and that Connie would probably appreciate that gift rather than the flowers I originally thought to send. I also told Connie that she and her husband were in my daily prayers and, as the race got closer, I would send her quick little emails.
Last year’s marathon was extremely emotional and difficult for everyone involved. Did your experience in the Patient-Runner Connection have any impact on how you felt about the events of that day?
Connie: Yes, in the tragedy of the marathon last year, I really believe that Sandy was looking out for me.