Dear Rebekah and Hannah,

When I was in middle school my entire group of friends started eating lunch at a table that my wheelchair couldn’t get up to. A part of me saw this for what it was — them successfully excluding me — while another part of me refused to believe they could be that cruel and were just eating at a different table because … what? They liked the view better?

Anyway, fast forward 20 years or so and I have the greatest group of friends I could ask for. Really. The notion of what happened to me in middle school would enrage them. And I know that, and I know that they care deeply for me, but I’m still terrified that someday they’ll do something similar — slowly leave me behind, weed me out of their friend group. I don’t want this to happen. How can I make sure this doesn’t happen?

Sincerely,
Let’s Not Repeat History

Dear Let’s Not Repeat History,

Is there anything more human than that panic-in-the-gut fear of being left behind, excluded, abandoned? I think it’s written in our DNA to do everything in our power to avoid that very feeling. And as disabled people, I think this might be written even deeper into our bodies.

I don’t even know how I learned to look for signs that I might be a burden on a friend. I was 8 when I first preemptively cut out a friend from my life before she could cut me out of hers. I worried that going the long way through the lunch line with me was becoming a hassle — that she felt stuck with me on the edges of the inaccessible playground. I know that frantic feeling that can kick up when you sense someone might be pulling away. I got so good at pulling away first.

And then I fell in love with this man who seemed to have been stitched together out of my dreams. I knew, confidently and quickly, that he was the person I wanted to be with forever. That word — forever — didn’t feel scary. Maybe, in part, because I was so sure he felt the same way. Then one night, when he was leaving my house, I threw open my arms and called out to him, loudly and easily, “I love you forever!” He froze in the doorway. Then I froze, staring at his panicked face. And in a matter of moments, this love that had felt so sturdy became a figment I couldn’t grab between two hands. He stumbled over his words. He didn’t know how to picture forever with me.

I stopped breathing. My body tingled as every cell in my body blared their loudest alarm: GET OUT. YOU’RE NOT SAFE. END IT. In a matter of moments, we’d decided — let’s go on a break. No talking for a week. He left quickly. I cried for days. Eventually, my body settled down enough to take stock. Up to this moment of uncertainty, I felt understood, valued and loved by him. He was kind to me. We made each other laugh. For the first time ever, I realized that I wanted to be close to this person as long as he wanted to be close to me, regardless of the timeline or guarantees he was able to provide. We stayed together. And counter to all the history that came before, I made the decision to keep my arms open, knowing full well there might be a day when we decide we’ve reached the end of the road together. Of course, that’s the setup with everyone we choose to love. There are so many ways and reasons that people come in and out of our lives. The obvious, terrifying, exhilarating truth we rarely have the guts to face is that there’s not a promise in the world that can guarantee we’ll never have to say goodbye.

I know the fear in your questions circles around a friend group, and platonic friendships and romantic relationships aren’t exactly the same. But the part that felt familiar to me was the grip on the “someday.” Will they still be here next year? Or in five years? I don’t know. They don’t know. And letting go of that guarantee can feel exactly like letting yourself fall out of a plane, just hoping your parachute will catch you.

I still hold back and protect my heart a lot. But the time I took a big leap and kept my arms wide open, despite the risk, I did get this glimpse of something that felt true — we are our own parachutes. Whether or not friends stay or leave or come back, I believe with an aching hope that we will land and grieve and survive.

So, my question to you is: If you knew these friends would only be around temporarily, would you still want them near? If the love they have to offer today feels worth the possibility of grieving their loss one day, then open your arms and soak them up as long as you have them.

Love,
Rebekah

Dear Let’s Not Repeat History,

I’m so sorry that a group of people you thought you could rely on ultimately proved you wrong. It would be so easy, and also true, to sum up what happened to you by saying that kids, especially middle schoolers, can be mean. But there’s a certain added cruelty when the safety we believed we had with a certain set of relationships is actually not there at all.

I’ve had a helper for a little over a year now who, over time, has turned into one of my best friends. Let’s call him S. He works a lot of hours, which means we spend a lot of time together. S is 23, which means he’s still able to be on his dad’s insurance, so our current situation works out. The realization that someday this will likely change — whether because he’ll need a job that can offer him health insurance, or for some other reason — terrifies me. It’s the fear of losing this iteration of our friendship, but it’s also the fear of losing my ideal care scenario: having a helper who’s not only attuned to my physical care needs but my emotional health as well. Someone who I feel fully comfortable around in my own home, who I can laugh with and hang out with but is also fine to do their own thing if I need time to myself.

Having someone help you live your life necessitates a certain level of intimacy, I think. This is how I’ve experienced care since I was 3 years old, when I had my first hired caregiver. She came into my life, I became close to her and then a year or so later, she left. This is the nature of these relationships, right? Since that first hired caregiver, I’ve had close to 90 helpers, who have all, in some way, shape or form, repeated the story of the very first. Being open to explore how this pattern impacts how I engage in relationships — or, as some might say, my attachment style — has been incredibly healing for me, just as pieces clicked into place when the weight of what I call the Big Leave finally hit me: My mom had to leave the operating room that 8-year-old me was trapped in, leaving me terrified and alone with the truth that I needed spinal fusion surgery to live.

Which brings me to the phrase you’ve chosen as your signature, and the contradictory nature of our lives. I read your letter and was struck with the realization that I’ve assumed endings for nearly all of my relationships. And yet, in so many instances this hasn’t been true. I still don’t know if my ascribing meaning to that moment in the O.R. is just an attempt at making sense of similar hurts in my life, or if, in fact, the desire to not repeat history is futile because we are all, in some ways, reliving our pasts. But of course, that’s not true either, and that seems, perhaps, where you’re stuck.

From the sounds of it, your current group of friends will not pull the same shit your middle school friends did, which is good. But change in friendships — in any relationship — is inevitable, and it’s likely that as all of your lives progress, the shape of your friendships will shift as well. It’s possible some will leave. We have no way of knowing. What I do know for sure, though, is that the abandonment and betrayal you felt in middle school will not be the same you might feel in the future if your current group of friends were to betray you, because you are a different person than you were then, and they are different people. It may gut you in the same way, but allow yourself to remember that this is different, that history is not repeating itself, but unfolding anew. I have no way of predicting what will happen with S, because each new relationship I encounter is unmapped — and this is the best way I’ve found to approach life, at least for now.

Love,
Hannah

Roadmaps authors Rebekah Taussig and Hannah Soyer don’t claim to know it all, but they have been traveling the disability road for quite some time and would love to share their experience with you. To submit your question, please send it to messyroadmaps@gmail.com.