Over the weekend, I met up with three friends from high school. One, I’ve been in regular touch with, the other two I haven’t seen since we were eighteen. We met at one of their homes, which was spacious but separated into cozy, welcoming rooms, the centerpiece of which had a fireplace and an enormous, cushy horseshoe couch. Over lunch, we spoke easily and endlessly, catching up on as much as we could cram in, carrying on seventeen conversations at once, and erupting into laughter every few minutes. It was as if forty-five years hadn’t passed since our last gathering.
They’d each had full lives which included, varied amongst them, exciting jobs, loads of travel, children, grandchildren, loving marriages, good health, comfortable amounts of money—and, what seemed to me, an ease about doing simple tasks that can take everything in me to complete. We listened to one another attentively, curious about each other’s lives and how we felt about living them. We were so lucky, we full-heartedly agreed, growing up where we did and supporting each other back then through such vulnerable and pivotal times.
It was kind of a love fest. One that I hope happens again.
But this essay isn’t about that.
It’s about shame. And I returned home heavy with it.
Later, in group texts, we effused how lovely it was to see one another. I’d had to drive an hour each way (they all live close to one another) on a day when the weather was really impacting my head. But I had powered through. I power through to some degree each day of my life—if I didn’t, the majority of my days would be spent holed up. I’m grateful I was gifted with tenacity.
The friend with whom I’ve been in touch over the decades and who knows all that I’ve lived through, texted:
Your strength is inspiring! I don’t know anyone who has toughed it out through such a difficult situation over so many years. I hope it lessens and lessens.
Such kindness! Such support! Such recognition and acknowledgment of all I’ve survived and still experience! Such love! I felt it deep-deep in my bones.
And yet. I was also overwhelmed with shame.
I’ve been trying to write about shame for years. It never happens. It’s too big. Too pervasive. It’s seeped into almost all areas of my life: friendships, career, money, romance, family, travel, animals, sports, et cetera. How do you fit all that into one cohesive, reasonable-length essay? You don’t.
The root of all this shame is my post-head-and-brain-injury body. Over the decades, I’ve grown to love my body tremendously. For one thing, when that seventy or eighty or ninety-pound tabletop fell on my head, I could have been killed or paralyzed or injured far worse than I was. Plus, I’ve healed well beyond what most doctors said was possible. Most of my daily struggles, I’m able to get myself through which allows me to stay connected to the world. Thank you, body. Thank you.
And yet. There’s a lot of shame in having chronic health challenges. Imagine the tallest mountain you can: so very very tall, even squinting you can’t see the tippy top. And now imagine the vastest ocean, everywhere you look is water upon water upon water. Combine those two, and even that doesn’t begin to touch upon the shame of the chronically unwell. I know many of you reading this are also navigating illness and/or disability, so you know when shame is present it’s vibrant and rushing and never tuckers out.
Yes, yes, I know I shouldn’t feel shame. I didn’t drop that tabletop on my head—and even if I had, no shame. Nor have I prevented my body and brain from healing faster than they have. In fact, I’ve done every single, solitary thing I know of (physical, mental, emotional, spiritual) to heal.
And yet. I am ashamed that all my best efforts have not been enough. I’m ashamed that I inhabit a body that stubbornly refuses to find full and steady harmony. I’m ashamed that I’ve fallen so behind friends and family in my career. I’m ashamed that I couldn’t do all I wanted for my mom when she was ill and then dying. I’m ashamed I can’t do all I’d like to do for my dad now. I’m ashamed I wasn’t able to visit my beloved niece when she was at college because it was during the seven years I couldn’t travel. I’m ashamed that when I travel now with friends I can’t afford to stay at or eat at many of the places they can. I’m ashamed I still can’t always follow conversations with more than one person. I’m ashamed of being lonely. I’m ashamed that some days I can’t drive. I’m ashamed I have to ask people (vets, doctors, friends, et cetera) to turn off overhead lights. I’m ashamed I routinely have to ask neighbors for help with basic things that I “should” be able to do. I’m ashamed I often have to repeat back things people said to me to make sure I understand properly. I’m ashamed of how many important, loving memories I’ve forgotten.
The shame doesn’t diminish the profound gratitude that glows in my heart that so many people do help me and so many understand. Gratitude and shame co-exist.
A few weeks ago, I was speaking with a friend who’d recently been on a first date. She liked quite a few things about the guy, but what made her wary was that due to a job change in his life, he didn’t have the income he once had; the income change wasn’t what bothered her, it was that he mentioned it more than once. I can see how that would be annoying. And yet. I’ve done that very thing. Pre-injury, I made a good income, for a writer. Post-injury, between the never-ending medical bills and the inability to hustle as much as I once had (though I do still hustle a lot!), I’m generally scraping by.
So I too have explained how my life used to be, how I used to have money (this “used to” explaining technique can also apply to dating, travel, career, social life, driving cross country, boxing, and so much more). So deeply wanting people to know, I’m not lazy or unskilled or ungifted or incompetent (though these are not the only reasons people don’t have sufficient money in this country!), I just have these health challenges—and I live in a country that does not support people with chronic health challenges. In fact, it punishes them.
Intellectually knowing this does nothing to lessen the incandescent shame I feel that these things are true about my life. The shame of being unlucky. The shame of being in the wrong place at the wrong time. The shame of having a body that doesn’t function the way I want it to.
It hurts my heart to write this.
I’ve lived through so many iterations of health challenges in the aftermath of this injury. In the beginning, it was three rounds of staggering, debilitating nonstop head pain (went to bed with it, woke up with it) that each lasted a year. But that is just one of a plethora of symptoms that have worsened or healed or newly appeared over the decades. From the get-go, a family member pronounced I was faking all of it for attention. They told me this, they told others this—and admonished them not to help me because it would only encourage me to fake it more.
Of course, I knew intellectually this was utter nonsense. And yet, and yet. I was scared and vulnerable and in terrible pain and not getting much sleep. The early years of my symptoms were before the football players were all over the news and very little was known about head and brain injuries, even by the doctors. Collectively, these circumstances opened enough of a door for this cruel voice to slip through and manifest as shame.
And then, yes, the doctors who knew so little. Not their fault. But they were quick to push my symptoms back on me. This astounding pain, this vertigo, these shifts in my perspectives of the world, the way low pressure and thick damp weather made me feel like I was at the bottom of the ocean, my rattled nervous system, my rearranged endocrine system and so much more, these were not a result of a serious blow to my head. These were a result of me being me. Once more, I intellectually understood this was utter nonsense. Once more, doors opened just enough for shame to slip in.
Plus, society. Society demands that your body be healthy. No matter what. If it’s not, you’re doing something wrong.
These concentric layers of not being believed delivered by people I had turned to for help at a time of my greatest need, my most gaping vulnerability, took a toll. Lack of validation allows shame to grow. And the deeper the shame grew, the more it undoubtedly slowed my healing. We cannot shame our way into health.
Shame is not always front and center in my life. In fact, most of the time, it’s quiet as a napping kitty. But it’s also never completely gone. And when something disturbs it, whoosh, it’s ready to pounce.
Such as this weekend. There was nothing, not one thing, my friends said or did that wasn’t kind, gracious, thoughtful, or supportive. The shame was completely generated by me. I was ashamed of the myriad ways I have fallen so behind. I didn’t for a moment think that they were viewing me that way (nor did I view their lives as free from suffering). But I was viewing myself in this manner. I had internalized all those voices that spoke so unkindly to me in the early years, and made them my own.
And the words my dear friend texted me with such love and kindness? I felt the love and kindness comfort my tired heart and was grateful. Yet, I also felt oceans and mountains of shame that I had anything to tough out. I know people who’ve recovered from serious health challenges and now move through the world with ease. Why wasn’t I one of them? Was I thinking the wrong thoughts, believing the wrong beliefs, and my body was listening? Was loneliness exhausting my immune system and diminishing my ability to heal? Had I been cruel in a past life and I was now burning off all that bad karma? Was there something I hadn’t yet tried, something that would fix everything, so that I could be healthy and normal like other people rather than strong and inspiring? Why wasn’t I enough? To be clear, none of this is specific to what my friend texted; when you are deep in your shame, you can take anything anyone says and turn it against yourself.
When I hit tough times, I used to call everyone I knew. This happened. That happened. I said this. I felt that. What does it all mean? And what should I do? I’d gather a consensus from outside myself, sometimes landing in a worse state because acting one way meant I was going against the advice of this person, but acting that way meant I was going against the advice of that person. Reader, it was crazy making—but it kept me distracted from the pain.
Now, I stay with it all. I’m not much of a meditator or journaler. Rather throughout the day, as I’m washing the dishes or walking the dogs or going upstairs to bed, I listen to my despair, really listen to what she has to say. Gelek Rimpoche, my lama, used to say that shame is not a bad thing, that it’s teaching us how we want to be in the world, how we want to feel within ourselves. So I listen to the shame. My shame is no dummy. She’s strong and wise and carrying a lot. I’d be foolish to push her aside or farm her out to others for care. Instead, I nod my head. “I get it,” I say. “It would be nice to have a loving partner, money in the bank, more travel, more adventures with friends, whatever it is you’re ashamed you don’t have….and ease with your health. Those are understandable things to want.” I hug myself. I kiss my inner wrists.
I do this practice myriad times a day. Each time the shame speaks, I pause and listen, then respond. No matter how many times I’ve done this, the beginning is always hard. The shame is loud, brash, forceful; convinced of its rightness. Listening to it, I fear, might kill me. But not listening will kill me, for sure. As the days go on, as I feel the sorrow and then the sorrow of feeling all that sorrow, the imprint of those voices that are not mine fade and I begin to feel Jane. I feel me. And from my darkness comes light.
My therapist says our shame,
though misguided, is actually trying
to take care of us.
She says we learn to blame ourselves
so we can believe the world is safe,
or would be safe, if only we
had done things differently.
It’s kind of sweet actually,
what each of gives to believe
in the beauty: our own good names,
our own good hearts,
our own wisdom and happiness all traded
for a galaxy that wouldn’t hurt a fly.
–– Andrea Gibson
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If you enjoyed this essay, you might also enjoy this one about asking for help:
"I hug myself and kiss my inner wrists" may be the most beautiful statement of self love I've ever encountered. Thank you!
Your words are so individual yet so universal. I'm going to listen to my shame today. See what the hell she wants me to know.
Also, your suitcase may have a large, deep pocket for shame, but it also has a large deep pocket full of lozenges, tissues, tampons, pencils, paper and advil that you offer up to every reader every time you write. Thank you for writing, Jane.