Last Friday night, my mom and I spent some time together, and then I dropped her off at home–and met some neighbors that were talking to my dad in the front yard.
Within a minute, I knew there was this deep connection, and as I listened to stories, I quickly knew why.
Health journeys. Unbelief from doctors, friends, family. Youthful optimism, yet shouldering a huge weight. Wanting someone just to “get it.”
As I looked at this high school girl–who appeared healthy and athletic–I could still see fear of the unknown behind her eyes. Doctors’ appointments. Lacrosse tournaments. End of the year exams. Exhaustion. The “What-if?” questions. The wisdom beyond her years that hard times bring.
My parents had already shared with this family some of my story, my symptoms, how it started in high school, how no one really knew what was wrong.
She told me about going to see a cardiologist next week and doing a tilt table test. I said, “I’ve done that. It’s kinda weird.” She wanted to know all the details and what to expect.
She told me about finally passing out in front of the doctor, and being so relieved that the doctor saw this happen, so that now he would believe her.
I made a quick comment about gender bias in medicine.
I went on to tell her my fainting symptoms and heart palpitations in high school–and that I was a female athlete, who could still compete fairly well under pressure, even with my health issues.
And then I stopped, and took a pause. ‘I’m here, and I also know that helpful advice or stories, or research can often be unhelpful. Just know that we have similar symptoms & I know a ton, yet I also know that each body is unique and complex. I can listen or I can share, or I can do both. Whatever is most helpful to you at any given time.”
As we were talking, time slowed down. I thought back to the hundreds of times I heard, “Well, there must be some reason you are going through this–your illness will be immensely helpful to others some day.”
Of course, on one level, these people were right.
And yet, as a kid, with this statement cloaked in a conservative Christian framework, I couldn’t help but feel like the “only purpose” of my illness was to help other people. That people already had chosen my purpose for me–even though the illness wasn’t theirs. I felt like my story, my wandering, my questioning, anger and pain, was quickly given a purpose without the journey. This statement also felt inauthentic–and it was.
Largely because my illness is/was for me. For my own healing. To come home to myself. Without my inner work, how I engage in showing up for others is more destructive than helpful. And growing up, I didn’t really have models of someone being vulnerable in their grief, moving through their grief and engaging the world in a new way.
And as I fell down and got back up-I learned that to a large extent, grief is personal. No one could know the inner landscape of my soul, as I sought to heal. However, a community could come alongside and hold space.
Ironically though, this was a moment, where I could come back to a phrase that felt so trite at the time, “Your illness will be extremely valuable to others one day’ and knew deep in my body, that this was what they meant.
I’ve journeyed along with others and their illnesses for several years now. Several of my friends have a long and complex health story. And yet this girl, reminded me so much of myself. Same age when my symptoms were surfacing. Same age when I finally decided to quit the track team. Crazy tests at secluded wings of the hospital.
Spirit had meaning infused into every detail of that evening. The fact that the history walking tour that my mom and I were doing went longer than I thought. The fact that my mom had surgery and so I was driving her home. That we pulled into the driveway as this family was in my parents’ front yard.
I don’t want to overlook those small details.
I’m sure dozens of stories will be shared in the future. I will listen, share my wisdom, most importantly hold space. I will show up, having done my inner work, and will keep doing my inner work. It’s not about helping; it’s about being together, and gleaning from our collective wisdom.
Here’s to more stories shared. For space to laugh, cry & connect. For others to not feel so alone.