I’ll never forget the summer I travelled 900 km with my eyes closed.
It’s not that I didn’t want to see out the windows (I desperately did), or that I had a problem with my eyes (they were fine). But saving my energy for the destination was what my three daughters—including the eldest, stuck with all the driving—agreed would make the road trip possible.
About 13 months prior, I’d had a bicycle crash, hit my head, and woke up in a body that wasn’t quite mine. Although I looked the same, a mild traumatic brain injury meant I couldn’t function as I used to. Fatigue was my middle name. Busy places, noise, and music were non-starters. I wanted to hide. I was pissed at all the changes.
At the six-month mark, an occupational therapist had me fill out a list of goals. My number one priority: Get back to work.
“You won’t start healing until you put yourself first,” she said.
I was pretty sure the therapist had no idea what she was talking about. My need to return to who I was pre-crash was visceral.
“I think probably all humans, when confronted with catastrophe, can’t comprehend the magnitude, and so we sort of pretend it hasn’t happened,” says meditation teacher and author Vidyamala Burch, who has spent 51 of her 66 years living with a spinal injury. “Trying to come to terms with the limitations of this body is an ongoing process.”
Slowly, I began to understand that what I needed wasn’t to go back, but to go inward.
Nonetheless, my therapist’s statement flicked a switch. Slowly, I began to understand that what I needed wasn’t to go back, but to go inward. A year after my accident, I was still craving what I had lost and angry at what I had. One afternoon while running errands, I was so fatigued I was ready to collapse on the sidewalk. What happened next felt almost spiritual. An alternative me—Self-compassion—draped a cloak-like arm around my shoulders and urged me home. Let’s go, she said. Fatigue needs rest.
When I woke up, Fatigue was gone, Self-compassion was making herself known, and home, as it turned out, was myself. That was the beginning of the return—not to how things were, but to a relationship with who I was becoming.
“To come into a relationship with what’s actually happening is the journey,” Burch says.
Turning inward made possible that 900-km summer road trip I’d been planning for five years. I began listening to others who had made their way through the process and, like me, were learning to be more present inside changed bodies.
Naming the Unnameable
What do you call that time of loss and betrayal when your body isn’t as it’s “supposed” to be? Is there even a word for being in a body you don’t recognize? How do we refer to a process we may not even be aware of?
“Body grief is making peace with the loss that comes with living in a body,” says Jayne Mattingly, author of This Is Body Grief. “If you’ve been through puberty, if you’ve lived in a body, you’re grieving, because when we change, we grieve.”
Whoever we are, however healthy we are, we’ll encounter multiple body grievances—which can include puberty, injury, chronic illness, disability, racial inequity, gender dysphoria, perimenopause, menopause, aging, and more—over the course of our lives.
“Where we feel that we’ve been entitled to a certain kind of life in our bodies, and we no longer have that, we grieve the loss of bodily autonomy,” says Jayne Mattingly, author of This Is Body Grief.
“Where we feel that we’ve been entitled to a certain kind of life in our bodies, and we no longer have that, we grieve the loss of bodily autonomy,” says Mattingly, who lives with chronic illness, pain, and disability. Her body grief framework encompasses seven phases: dismissal, shock, apology, fault, hopelessness/hope, and body trust.
“Until now, we have had no language—and therefore no tools—for how to process the complex range of emotions that make up this experience of body grief”, writes Mattingly in her book. “When left unacknowledged and unprocessed, it starts showing up in other ways—as reactivity and anger, unregulated emotions, isolation, eating disorders, addiction, and even trauma.”
Similarly, but a bit different, Burch maps her journey to Elisabeth Kübler-Ross’s five stages of grief: denial, anger, bargaining, depression, and acceptance. In the denial stage, which followed a spinal cord injury at the age of 16, Burch threw herself into work and managed to dislocate her awareness from her self—like “‘Mr. Duffy [who] lived but a short distance from his body,’” she says, quoting from a story by Irish author James Joyce. “I took the drugs and pushed,” she says. “‘Nothing’s really happened and everything’s all right’… The magnitude of the loss—you just can’t begin to comprehend it.”
Seven years later, following a car crash that resulted in a spinal cord fracture, Burch again returned to work as soon as possible. “I built my fortress of denial. And then, of course, the body gives up. You can’t keep going like that.”
Burch says she skipped the anger stage (opting instead for self-hatred) and moved on to bargaining, a confusing ‘if I do this, then this’ internal debate. Her inner struggle led to an understanding that she had “a thing inside called the mind,” that she could choose what she did with it—and that the answer lay in being in the moment.
“I look back at the girl I was then—so lonely, so broken,” she says. “I don’t want someone to spend 25 years in that place.” Eventually, Burch began using meditation to turn toward her direct experience. She moved from New Zealand to a retreat center in England, where she “learned to love and be loved.” As those two things integrated, she began to accept her mind and body as they were.
There’s no rule that says the stages must be experienced in that order, and some people progress through the cycle more quickly. Adaptive and accessible yoga teacher Rodrigo Souza says that in his own journey, he jumped straight to anger. An avid hiker and climber who has followed his passions around the world, Souza fell from a cliff, broke his back, and became paralyzed from the chest down. “My body had let me down,” he says. “It reminded me of things that it could no longer do.”
“I just say the body holds on to things,” says Georgina Miranda, an athlete, social entrepreneur, and educator who experiences severe asthma. “It’s our responsibility to figure out what that is, be it grief, some form of trauma, or something else.”
You have to allow yourself to go through stages of grief, Miranda says. “I don’t think grief hits you all at once. Say you get a cancer diagnosis—it’s a shock, and there’s probably denial and anger.”
After a deep period of grief, acceptance can provide a softer place to land. That doesn’t mean you stop feeling the grief, but you’ve come to terms with it, made friends with it, and it can coexist with joy.
From a place of acceptance, Miranda says, “At least you’re aware enough to give yourself that opportunity to figure out how to release the grief when you can.”
Why We Can’t “Just Be With It”
While working on this story, I spent a weekend with a cousin who’s dealing with increasing pain from an injury sustained several months ago.
“You know that book I’m OK—You’re OK?” I asked. “It actually seems that realizing you’re OK with not being OK is more likely to lead to healing.”
We’re told to be strong. Bounce back. Keep calm and carry on. Our culture prizes resilience, but only the shiny kind—the kind that doesn’t take time or make others uncomfortable.
My cousin gave me that you’ve-got-to-be-kidding look. “Nothing about this is OK,” he said, rhyming off a list of tasks he can no longer perform, environments he can’t handle, and a schedule that keeps him in a stronghold. It was all painfully familiar.
We’re told to be strong. Bounce back. Keep calm and carry on. Our culture prizes resilience, but only the shiny kind—the kind that doesn’t take time or make others uncomfortable.
“Survival is connected to our ability to work, earn, and be productive,” Mattingly writes. “Fear of our body failing us and not being able to perform according to these expectations is what fuels our fight.”
Other socio-economic struggles can also complicate the way you navigate body grief. A person who has access to relevant resources—financial savings, paid sick leave, affordable medical care, a medical system that treats your issues seriously—will have a very different journey through body grief than someone whose resources are more limited.
Sometimes, it’s a fear of being seen as weak or “not trying hard enough” that stops us from being OK with not being OK. “What really saddens me is that people don’t give themselves the opportunity to go through the stages,” says Miranda. “You get a bad diagnosis, unpleasant news about your health, or you’re not getting the outcome you want. People around you are kind of rushing you along to move on and let it go. It’s not so easy.
“We live in a society that’s just, ‘Keep going,’” she says. “There’s no space to grieve. There’s this expectation that you’re supposed to move on, let it go.”
To grieve a body isn’t weakness. It’s a path to remembering, reclaiming, and reentering the self. And that’s the only way to acceptance, or in other words, body trust.
The Path to Body Trust
When body grief hits, there’s no clear map. But people do find paths—through mindfulness, stillness, nature, breath, creativity, movement. These aren’t quick-fix strategies, but doorways to being with what’s difficult. Sometimes, healing means crying your eyes out and feeling bad for yourself. Sometimes it’s doing the dishes, patting yourself on the back, and eating a piece of cake.
“When I’m in the deepest, darkest moments of my body grief, I just want to be all better,” says Mattingly. “Unfortunately, it doesn’t work like that.”
If there’s no shortcut, what does the path look like?
Creative Expression
Mattingly remembers fighting her feelings. “My therapist would say, ‘Watch them pass like weather. Don’t judge them.’ And I would. I’d judge the f*** out of my emotions. The more I judged them, the bigger they got. That’s one gift from my eating disorder recovery: I learned not to judge. And that made the grief journey a lot simpler.”
To move through it, you have to start feeling.
To move through it, you have to start feeling. One of Mattingly’s go-to practices is treating yourself like a child who needs a safe space to express big emotions. If music feels good to you, make a playlist that mirrors your pain. Use crayons, markers, colored pencils. Name your feelings, and start coloring. Let the colors shift as your emotions do. “It’s basically mindful meditation,” she says.
The person who most needs mindfulness, Mattingly adds, is often the one who resists it. Sit with the discomfort. Notice it. Breathe. “It could take an hour, 10 minutes, or one minute. Just notice as emotions shift. Don’t judge them,” she says. There might not be a breakthrough, just a small change: “OK, I’m feeling a little better.”
Mindful Movement
Rodrigo Souza was introduced to meditation by his Zen Buddhist grandfather at age seven. In his 20s, he picked up yoga. At the time, it was just part of his life—but years later, those early practices became essential.
Ten days after his climbing accident, while Souza was at a rehab facility, a worker demonstrated a simple stretch to decrease muscle spasticity. He couldn’t do it yet, but he recognized the movement as a yoga pose he’d once practiced. Souza began searching online—wheelchair yoga, yoga for spinal cord injury—and eventually contacted another spinal cord survivor with a plea for help during what he describes as a “dark night of the soul.”
Then he got to work. The only time Souza felt comfortable in his body was while practicing yoga. He also credits mindfulness and Buddhist psychology with helping him navigate through his darkest days. “I came back to life really fast,” he says.
Later, while working as a rehab instructor, Souza led a mindfulness practice for a group of 15 other paraplegics. “That was the most profound experience of my life,” he says. The room quieted. He could feel the collective grief raining down. But there was also a beautiful sense of peace and even joy.
Souza now travels the world teaching adaptive yoga. “What saved me through the dark side was not the yoga itself,” he says. “It was being in the body.”
Meditation
Georgina Miranda had always been known for adventuring outward—climbing mountains and doing physically difficult things. But the hardest challenges turned out to be internal.
She had already trained in mindfulness and breathwork prior to her asthma diagnosis. Afterwards, meditation gave her brain a break from the constant flow of thoughts. At one point, she remembers asking herself, “What is this? It feels like an endless ocean of grief.”
She realized that maybe the grief needed to be released, and that became part of the discovery. The difficult experience may not have felt like it fit the “trauma” label, but it still left an imprint and called for attention.
Being With Pain
For Vidyamala Burch, community—which lessens the isolation in times of pain and illness through connection and knowing that “there are other people like me out there”—as well as a skilled teacher are critical. In the early 2000s, she began running courses and founded her company Breathworks, where she teaches people to work with pain at the level of sensation.
“We intensify our experience of pain through our resistance to it,” she explains. “We can learn to soften the resistance and the experience. That’s quite a simple message, but it’s life-changing and profound.”
“To come into a relationship with what’s actually happening is the journey.” – Vidyamala Burch, founder of Breathworks
The Breathworks program begins with a body scan done lying down—often the first time in their body grief journey that people experience their bodies without bracing against them. “You’re not doing some complicated meditation,” Burch says. “You just need to lie down and be guided to come into your body.”
As people draw closer to their actual experience, pain starts to shift. “This thing we call pain is actually made up of many different elements,” she explains. “Your pain becomes a river rather than a rock.”
It can start that simply. Take one breath. Release the resistance.
Becoming Whole Again
Conducting interviews for this article made me realize I still have much to learn.
“I have unfinished business,” I said to Souza.
“We all have unfinished business,” he replied. “We never finish. And if we do, someone will put sand over us.”
In her book, Mattingly describes body trust as “the acknowledgment that you and your body are on the same team.” Though in her framework, body trust is the final stage, there’s no such thing as being done grieving, she explains.
“Body grief is something that we all experience, whether we choose to heal or not,” Mattingly says. “Trust is something only some of us will experience if we choose to do the hard work.”
Burch agrees. “I don’t think you get to the point where you say, ‘Tick, I’ve done that.’ It’s an ongoing process.” She’s still on a quest to understand what it means to be present and know that that’s all there is. “The past is a memory. The future is an idea. The only moment that we can actually live is what’s happening right now,” she says.
Burch believes the end of the line isn’t just acceptance, but actively embracing one’s situation with love. “Out of a very deep willingness to inhabit your life as it is can come abundance, happiness, joy, all these sorts of things,” she says.
For Souza, self-compassion leads to acceptance, which allows you to experience your situation and make it manageable. “Going through grief is like hugging a cactus,” he says. “Every day you do a little bit. It hurts, you step back. The next day you face it again. You don’t ever heal completely, but you’re no longer scared.”
Indeed, there may come a breakthrough when grief transforms into something you’re even grateful for. “Gratitude gets left out of grief a lot,” says Miranda. “It’s such a powerful shifter of things.”
The loss of someone may provide a way to tune in to gratitude for the time you had together. A terminal illness, perhaps, can bring gratitude for the life you were able to live. “Is it somehow showing me or helping me grow in a way that maybe I wouldn’t have otherwise?” asks Miranda.
My recovery process involved slowing down—something I had never appreciated. I leaned in to mindfulness and meditation, and I picked up a brush and started painting. Most importantly, it gave me the gift of time. And a deeper understanding of what it means to stop resisting, accept where you are right now, and be OK with wherever that happens to be. In other words, to experience body grief.
