Listening for the Long Haul

(Johanna has given us permission to write this post)

For over 10 years we have sat together, commiserated together, questioned together, yearned (for better days) together, and certainly, grieved together.  And we will continue to do so.  For over 10 years cancer had been a part of their story.  Jay was diagnosed with brain cancer in 2011.  He was only 32 when he received the news. We met his wife, Johanna, through a mutual non-profit connection and we have been linked to her (and Jay) ever since.  

Last week we received a text, one we’ve been waiting for for such a long time:

“Jay passed away a few hours ago.”  

People often ask us, “So how long do you listen to Someone”?  The simplest answer is “…as long as it takes.” We’ve had a lot of articles written about Someone To Tell It To’s mission over the years. Most recently, Someone To Tell It To has been highlighted in Psychology Today where the writer mentioned Someone To Tell It To’s unique model of “two volunteers meet(ing) with people reaching out for connection regularly. This differs from most call centers, where a person typically speaks with different volunteers upon each contact.”  Someone To Tell It To’s relational model is unique, yes, but Someone To Tell It To’s relational model is desperately needed in addition to standard therapy and counseling models.  

In responding in greater detail to questions about “how long Someone To Tell It To listens”, we often use Jay and Johannas’ situation as a case study.  As good listeners, we often respond to their questions with a question such as: “What does someone like Johanna do when Jay’s situation has lingered for such a long time? Does she go see a counselor for six sessions until insurance companies no longer pay for her time with a professional? Does Johanna seek friendships or her faith community for support? Yes, yes she does, but when she has been fully immersed in full-time caregiving, does Johanna have time to keep investing in relationships? Not really. In fact, her world has grown smaller and smaller since Jay was first diagnosed, which is so often the case for caregivers of people living with cancer.  

On March 27, 2018 Johanna (and Jay) gave us permission to tell their story through a blog entitled “Just Wanting To Be Heard.” In that article we wrote this that Johanna said:

I think one of the hardest parts is that everyone’s watching. Everyone feels like they’re part of our story even though they’re not really involved in our life at all. People would say, ‘Oh I’ve been praying for you!’ and they would talk to me like they’re my best friend, but I would always feel like, ‘I don’t know you. You have no relationship with me. I don’t feel like I can call you for support.’ That’s been really hard.

And then the people we did try to connect with, it was like chasing them. And we were just tired of chasing for relationships.There were people who’d get frustrated when I’d have to cancel or reschedule last minute, but Jay is hour-by-hour, minute-by-minute. I never know how things are going to be. So everyone is praying for us and watching our story, but they’re not in our life.

Johanna first connected with Someone To Tell It To through her job at a nonprofit organization in Harrisburg, Pennsylvania. Originally, the connection was meant to help support the women the nonprofit serves, 

“But instead, I ended up referring myself,” Johanna told us with a laugh.

People are afraid of pain,” she says. “People are afraid to get close to us because they don’t know what to say to us. With Michael and Tom (Co-Founders of Someone To Tell It To, with whom Jay and Johanna first met), it’s totally different. They’re ok to just be there and listen, which is all we really want. We could write a book on all the advice we’ve gotten, when really, we just want to be heard. We just want to be treated like everyone else. Jay and I are still parents. We still have a toddler. We still face issues other people face.

It wasn’t just the fact that Michael and Tom listened with compassion; it was also the flexibility and nature of the relationship.

Johanna says, 

It’s not just face-to-face; by email, they’re very responsive. In other kinds of settings, you’d never be able to send an email to your counselor. That wouldn’t be appropriate. But I knew I could email Someone To Tell It To without having to set up a time or an appointment. Because of Jay’s situation, we never would have connected with Someone To Tell It To if we had to meet them in an office all the time. I think that’s the main thing: They don’t have the clinical boundaries that can often separate you from really being able to share with someone. They really do care and want to engage in our lives and our stories.

Circumstantially, life has not gotten any easier for Jay and Johanna. It’s certainly nothing like what they expected when they first envisioned their lives together. But at least now, even if the burden isn’t smaller, they know they’ll have help carrying it.

It’s good to know that there’s someone. There are people who will listen and let me be who I am. They actually know more about me than anyone else in the world and to me, that’s very significant because your story is like your heart. It’s everything about you.

Today we honor Jay’s life. Today we honor Johanna’s life. Today we also honor all those who are willing to listen for the long haul.

Photo by Katie Moum on Unsplash