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Jared and Will, who have been matched for just 1 year, share their thoughts about the Patient-Runner Connection program.
Will, patient connection, with Jared, runner.
There is an age gap in your relationship, so communication is not always directly patient to runner; how do you successfully engage runner, patient and families into the program?
Mary (Will's mom): Over the years we have spent in the program this communication has changed as our involvement has evolved and Will has gotten older. The first few years we were really just learning the program and trying to teach his runners what their running meant to families like ours so, there was a lot of basic emails about liver disease. Then we moved to being able to participate in some of the long training runs and come out to meet the runners. When Will had been matched with a previous runner, the runner would email both me and Will and let Will ask him questions about his training such as how does it feel, what if you need to go to the bathroom while running, and what do you eat?
When Will and Jared paired up last year this level of communication continued again. We began with the usual specifics about Will's liver disease. We would communicate between myself and Jared with Will contributing his take on the topic. But Jared has also taken the time to get to know Will and his likes, etc., so the communication has various levels. There are the basics between Jared and me, the translation from Jared to me to Will and then the direct interaction with Will and Jared. We are able to engage Jared and Will at more of a "friend" level where they talk about common interests and Jared's training. This leaves me to be able to communicate with Jared about his fundraising and training.
So I guess the shorter answer is tailoring the communication to the individual interests of the patient, runner and family. Each person has a different connection to the program but all are equally invested.
Jared: Communicating with Will is primarily done through emailing back and forth with Mary, who has done an incredible job with keeping me informed with updates about Will, the family and Will and his older sister Madison’s athletic schedules. The great thing about Will is that he and I share the same love for athletics, so we always have something to talk about. I remember when I was Will’s age always trying to fit in with my older brothers and their friends. Because I was much younger, I never had anything in common with them except for being able to talk about sports, so that became a comfort zone for me and I’ve tried to take on that same approach with Will. Since I am over 10 years older than Will, it would normally be difficult to find a common ground, but talking sports has been a great conduit to getting to know Will outside of athletics as well.
With school and sports schedules, work commitments and busy day-to-day lives, how do you stay connected with each other?
Mary: As far as communication with us and Jared, I wish I had some great advice, but unfortunately we really just email kind of sporadically in the off season. As the season gets going, we try to help at various runs, etc. so that keeps us connected. Whenever we see an ALF or RFR email, it gets us back into the mode and I typically email Jared to see if he will be running and if we will connect. Will is also old enough to ask about Jared and with the same interests things will come up that jogs his memory too. For example, running cross country made him want to go on a training run with Jared.
Jared: Working and living in Boston without a car would normally be a recipe for not being able to stay in touch with your patient match; however, through email, American Liver Foundation events and Will’s weekend games, communication between me and the Pawelas has continued. I’ve attended a few of Will’s hockey and baseball games, which have been a great way for me to stay in touch with Mary, Madison and Mark (Will’s father) and are also a lot of fun to watch.
Often people worry that communication will fall off after the initial meeting or email, what advice do you have for new participants in order to keep communication going?
Mary: I think the biggest piece of advice is to get to know each other and find common interests besides the marathon. These things have kept Jared and his training in our minds. I also think the more invested people are to the cause helps too. It really just takes something to spark their interest in the team and program and then you get hooked. As a patient you already have a connection now you just need to broaden that connection to your runner and their involvement and it becomes much easier to stay connected!
Jared: My advice for anyone thinking about participating in the Patient-Runner Connection would be to: A.) Stop thinking about it and do it because it’s worth it in so many ways. B.) Be proactive and always keep lines of communication open C.) Don’t think of the Patient-Runner Connection solely as an obligation to the charity, you’re gaining a friend who you normally would never have met.
It was an easy choice to run again for Will this year.