“When we are listened to, it creates us, makes us unfold and expand.” – Dr. Karl August Menninger Words can not even begin to describe the amount of learning I did this summer. I learned about others, the world, myself, friendship, confidence – my list could go on and on. However, I want to hone in on a lesson I did not plan on learning. Though my therapist has been telling me this for a year now, I didn’t believe her until this summer; everyone’s story deserves validation. This summer, I was fortunate enough to listen to hundreds of stories. Over the course of seven weeks, I learned that even though I can’t prescribe medication or provide new housing options, I can listen. I can listen to what people say with attentiveness and intrigue – and that is enough. I never before thought that listening to stories could be so powerful. I know, for myself, having someone listen to my story allowed me to grow as a person, as a sister, as a daughter, as an orator. Through the difficult and rewarding task of listening and being listened to, I now tell a different story than the one I would have a year ago. I am so thankful and humbled that I was able to listen to so many incredible stories this summer – the easy ones and the hard ones. I began to grasp the concept that listening, in and of itself, is a catharsis and I am truly grateful for this lesson. I have unfolded and expanded, and I like to think that I also helped some others to do the same.
After asking so many people to open up to us and share some of their deepest emotions and journeys, it would be unfair of me to refrain from doing the same. So here are my final reflections.
Before this trip began, I couldn't have been more excited. I knew from Ellie and Claire that sharing sibs stories would be an important thing to dedicate 7 weeks to, but I had no personal perspective.
As we began interviewing people, I was a bit unsure of what my place in this project was. People would ask Ellie and Claire if they had any personal epiphanies that came out of these interviews. And then they'd ask me what I was learning, as a non-sib. At first my answer was simple: I was learning about what it is like to be a sib. But slowly I began to understand why it was important that a non-sib participate in this unusual journey.
On a very personal level, I began to realize that if I had never considered that this community of people has an important story to be told and a voice to be heard, how many other communities are out there that I hadn't realized existed? How many other communities need to be given a voice?
I also now understand that though there are many conversations to be had between sibs about the overall needs of the group and their siblings, at some point, those conversations need to move beyond just sibs in order to have a greater impact. Non-sibs need to understand the importance of the sibling perspective, but until these conversations move outside the sibling community, that won't happen.
I'm so thankful to have gone on this trip. I'm still processing our journey and have new thoughts every day. There's one thing I know for sure: I couldn't have asked for better companions this summer. Ellie and Claire are remarkable women and put a tremendous amount of love and effort into this project. I want to thank them for being so open with me and for thinking of bringing their non-sib friend along for the journey of a lifetime.
All my love,
This trip, above all, taught me about being a sister. Sibs described again and again how when they were growing, they often felt like their role was that of "the third parent". Sibs, for a variety of reasons, spent much of their time feeling maternal or parental towards their sibling instead of feeling just like their peer. They talked about their instinct to help out with caregiving and how they would often be involved in making decisions about their sibling's future. They spent time questioning their parent's treatment of their sibling and then often simultaneously wholeheartedly believed that their parents had done everything they could for their family.
I'd be lying if I said that I didn't share these feelings with the sibs we talked to. My parents would at times remind me that I was not my brother's mom and that therefore I shouldn't worry about these things. Despite these reminders, I seemed to frequently find myself bossing Adam around or speaking to him in a stern voice rather than just joking around with him as his sister. A few sibs we talked to at our last stop in LA really crystallized this distinction for me. Liz Dean told us about how she realized years later that she simply felt more comfortable acting in the maternal role because she had a model for that. She didn't know what it looked like to simply be a sister since it was just her and her brother in the family. Next, Audrey told us about how her relationship with her sister has improved so significantly since she's decided to strictly stick to the peer level when it comes to her sister. It turns out, being sisters is much more fun than being a fake parent!
I know that I am extremely lucky to be in a situation where I don't have to be responsible for my sibs' medical and physical daily care. My brother is very high functioning and therefore mostly just needs occasional therapies and supports, but not round-the-clock care. But I also know that because I'm lucky enough to be in this situation, it would be silly to not take advantage of the opportunity to be able to simply be a sister. I hope to have children one day, and when I get there, it will certainly be parenting time. But, for now, it's time to focus on my role as Adam's sister and help him thrive in that way.
I also found two new unofficial sisters in my coresearchers, Ellie and Renee. You two both inspired me daily and I hope by now you know that I will always be there for the two of you.
Forever grateful for this opportunity,
We'd like to again thank all of the sibs who shared their stories with us, friends who religiously read our blog and deemed it "the best read of the summer", our parents for allowing us to go on this journey and supporting us along the way, and of course, the Martin Dale family for making this part of our journey financially feasible.
Ellie, Renee, and Claire