Lost and found

What my daughter's sadness taught me about the trance of unworthiness

My wife and daughter recently returned from two weeks in New York. My wife told me that at the zoo and the Museum of Natural History, my daughter became sad seeing other dads doing things with their kids. She said she wished she and I could do more together—that I could take her places by myself or take trips with her.

My daughter and I were watching Berenstain Bears together before she headed off to zoo camp. I encouraged her to have some breakfast, and she wanted white bread, which we don’t have because of the gluten. She started saying she wished we could be a normal family that eats white bread and Fruit Loops, which quickly turned into a wish that I could do things with her that other dads can do.

I told her I wish I could do those things too and take her places as well, and that I understand her sadness. It feels sad for me to hear, too. I also told her we're not a normal family. I’m not normal, and she’s not normal, and Mom's not normal. I told her I love that about our family, but I also understand, especially at her age (11), that she’d like to feel more normal.

I’ve had experiences like this with my son, too. We moved to Austin from New York ten years ago when he was ten, and that’s when I got my first wheelchair. It was really difficult for him. When I showed up to one of his soccer games in my chair, he could barely look at me. Now that we see each other much more infrequently since he’s been in college, he’s not with my disability on a daily basis. Coming home, amongst other things, involves a shock to his system to have the disability in his face again.

When I told my wife about the conversation with our daughter, she said it was wonderful that she desires more for us in terms of things we can do together and that she feels comfortable expressing it. That’s all true, and it touches something deep within me—this feeling of defectiveness, and a sense that no matter how much I give and love, it will never be enough. Sometimes it feels like the muscular dystrophy eclipses everything, and I’m being experienced in two dimensions and experiencing myself in two dimensions. It’s so painful, and there’s a reflexive firing that happens with certain narratives and beliefs that deepen the loneliness and the pain.

The Trance of Unworthiness

Later, in the shower, after doing my exercise, I said to myself, “They’ll appreciate me more when I’m dead.” That’s when I knew I was in the trance of unworthiness. I was able to step back just enough to recognize the pain there. The loss of ability is not just the loss of things I can do for myself. It’s also the loss of things I can do with others—my wife, kids, and friends—as well as their respective experiences of loss. It’s easy to get lost in the loss when habitual narratives about defectiveness take hold.

I've overcompensated for so long, in part to justify my existence and to protect against the loss and the pain, which prevented me from truly grieving or being present with it. I’ve worked so hard to have a seat at the table. I don’t want to work so hard anymore. I know what gets left behind when I do. This is why softening and self-compassion practice feel so important for me now.

Recognizing the narratives and the constrictions, stepping back, and coming home to the sadness, pain, and loss feels like healing. When I’m able to do that, I’m not experiencing myself in two dimensions, and I’m giving voice to something that has been walled off and silenced for so long.

We all have these parts that get walled off early in our lives in the service of protection, but the walls don’t automatically come down when we’re more equipped to deal with the vulnerability. Protection turns into deprivation over time. Follow the scent of the shame until you hit your wall. There’s something longing to be found on the other side.

What part of you needs to be found?