I have been struggling a lot of late with the feeling that I can never just let go and relax.

Thinking about what it would feel like to let go is like is like imagining what it would feel like to fly. It is a pure abstraction. I can conceptualize it intellectually, but I have absolutely no somatic reference point for it. I really have no idea what it would feel like to actually let go.

To understand why letting go is an alien concept, it’s important to first understand what it means to hold on.

Holding On

I’ve lived so many years of my life with so much constriction, like the inside of me is a tightly coiled snake, an ongoing tension around control, or more specifically, loss of control.

Letting go involves an implicit trust that my body will do what it needs to do. That is something I have never been able to afford. Even decades ago, when my body was capable of doing most things, I was already hiding the things I couldn’t do.

On top of the hiding, I lived in a state of constant, low-grade calculation, wondering for how much longer I would be able to do the things I was still able to do like walk, play tennis, navigate a flight of stairs, play guitar, and simply take care of myself.

These are all things I used to do. These are all things I can no longer do.

Muscular dystrophy is a degenerative disease. Living with it requires a state of perpetual, rigid tension. There is no autopilot with a body like mine. Every action requires a conscious command. My baseline state, especially when my body is in motion, is of hypervigilance to maintain function and safety.

If holding on is my baseline, what would the alternative be?

Letting Go - The Physical

Letting go would be getting up from a chair without effort and all the calculations that I make like the position of my feet, making sure they’re firmly planted on the ground and don’t slip, and rocking back and forth to get the momentum I need to stand.

Letting go would be walking without thinking about it, without being acutely aware of the texture and contour of the floor with every step, always scanning for slight inclines, bracing not to lose my balance, never letting my mind wander even for a split second because that is all that it takes to fall flat on my face.

Letting go would be singing in the shower, rather than navigating the space like I’m in a Squid Games contest.

Letting go would be making love without having to be in my head, worrying about my body functioning the way I’d like it to.

Letting go would be having energy to make it through the day, to do the things I need to do like shower, dress, exercise and work. It would mean not having to face consequences for doing what most people do on autopilot.

Letting go would feel like every muscle in my body simultaneously unclenching. It would be all the tension accumulated in my chest and stomach dissipating, dissolving into the ether.

Letting go would feel like my body remembering what it knew how to do before I learned to hold it all so tightly, before the fear of being exposed constricted my entire being.

Letting Go - The Emotional

Letting go would be wailing, going completely limp in my wife’s arms.

I have spent a lot of energy trying not to be a burden. Letting go would be surrendering my body to someone else. It would require trusting that they will not buckle under the mass of me, both my physical body and the concentrated grief I carry.

Letting go would mean dropping the stoicism, the caretaking role, the need to be the strong one who holds everything together for everyone else.

Letting go would mean sometimes reverting to being the baby bird with the gaping mouth, exposing the primal need without the immediate, choking constriction of shame.

Letting go would be holding the hurt, pain, grief, loss, fear, gratitude, love, and awe in the exact same spoon. It would mean allowing them to exist as undifferentiated, millions and millions of tiny grains that rub against each other until they fuse into a singularity. Currently, my mind wants to categorize and manage these states, separating the tragedy of the MD from the profound beauty of my marriage and my children. Letting go would mean containing these multitudes without needing to resolve the inherent contradictions, needing to make them make sense, or needing to organize them into something manageable or easily digestible for myself or for others.

Letting go would feel like a cloud, a bed of feathers, floating in a salty sea where the water provides the buoyancy my muscles lack.

Letting go would be surrendering, the absolute cessation of yearning for things to be other than what they are. It would be the end of my impossible argument with reality.

Letting go would be the dissolution of the boundary between my defective, isolated body and the rest of the world. It would be the realization that the separation was only ever maintained by my own anxiety.

Letting go would be where all the brittle material falls away. The dead leaves, the dry branches of outgrown coping mechanisms and protective armor. It would all just blend together into the soil, decomposing, breathing softly and slowly.

Letting go would be effortlessness, ease, and no longer striving.

A New Understanding

I can conceptualize and articulate it. I can even feel it in brief, fleeting flashes during meditation or a psychedelic session, when my overworked default mode network finally powers down. I can even feel into it as I write.

But sustaining it, living in it, and actually letting go instead of just thinking about the concept of letting go still feels like attempting to fly by flapping my arms.

This exercise underscores the core misunderstanding that I have unwittingly been perpetuating for much of my life. I have always conceptualized letting go as a destination, a permanent state to achieve. But like with happiness, the practice is not about learning how to let go entirely, but simply, or not so simply, learning how to trust a bit more.

Letting go demands a finality that my nervous system structurally and understandably rejects. Trust, however, is incremental. Trust is a momentary suspension of my defenses.

Letting go feels impossible most of the time because it is, but can simultaneously be, albeit briefly, miraculously possible in moments when I am actually present, and with someone who is entirely present with me.

Letting go isn’t an event, or a destination on an emotional map, rather it is an accumulation of micro-surrenders, practiced in distinct moments, and those moments begin to stack, and the trust builds bit by bit, and breathing underwater starts to feel less like drowning and more like a different way to breathe.

If this is what letting go looks and feels like, it’s something that at least no longer feels, as Rilke put it, like books that are now written in a very foreign tongue, like I can stop trying to fly by flapping my arms, and trust that the wind will carry me if I let it, and that I can stop trying so damn hard.

What would letting go feel like for you?

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Shame is something that everyone carries and almost no one talks about plainly. We came at it from different bodies and different disciplines, David from psychology and the lived experience of muscular dystrophy, Justina from philosophy and the lived experience of chronic, invisible illness.

What follows is both of us answering three questions, in our own voices.

1. Has shame ever made you feel monstrous?

David

Yes, and not just in the abstract. For years I told people that when I died I wanted my body thrown into shark-infested water so it would be torn apart. I meant it. It was an honest reflection of how I felt about my body. I’d be lying if I said I didn’t enjoy the shock value as well. Other times the image was my emaciated body on a heap of other bodies, like the photographs from the concentration camps, where I would have been killed twice over, for being Jewish and disabled. These are the kinds of thought secretions that existed underneath the functioning, relatively composed person people met.

I don’t feel this way anymore. I’ve learned to love and care for my body, but this is what shame does that ordinary self-criticism doesn’t.

Self-criticism is about doing it wrong. Shame is about being wrong, that there is something fundamentally defective that should not be seen and maybe should not exist.

Monstrous is the right word, because the monster is never just bad, it is exiled and Other by its very nature. This is what I loved about Guillermo del Toro’s Frankenstein, how he so clearly learns about himself, based on how he is responded to, which becomes impossible not to internalize. This is what makes him into a monster.

I wasn’t born feeling that my body was defective or monstrous, or that it was shameful to have a disability. I learned it early, long before I was aware it was happening, and long before I had the capacity to understand what was happening. I learned that my reality was something that I needed to hide in order to belong. No one taught me that, but I don’t remember ever feeling otherwise.

Justina

Short answer, yes. When I got ill, I started to feel different from other people, like something was wrong with me. I began comparing myself to others, focusing on my disability and my decreased ability to work and study. I also compared myself to the lost image of myself from before, when I was not disabled. For me, that ideal image, a robot-like woman who could work every single day, became an impossible dream. When that ideal became impossible, my identity shattered.

The disease changed me in ways I did not expect, showing me the devastating and destructive effects of being ill and disabled. The shift made me dislike myself. I did not like the person I became, because it was not how I imagined myself, not the person I wanted to be.

This self-loathing made me see myself as monstrous: outcast and radically different. I became the Other in my own eyes.

Despite these feelings, what helped me was analysing shame and understanding how it works. By dismantling its mechanism, I understood that I am not worse than others. I am different, but that does not make me monstrous or less worthy. I noticed internalised ableist views, taken from my culture, floating around in my mind, and I realised that this is not me, this is how society sees me, and I had taken those views as my own thoughts. That realisation helped me pay closer attention to what I think, which in turn helped dismantle the ghosts inside my mind that made me feel monstrous.

2. Is there a difference between feeling shame about the body versus the mind?

David

There is and there isn’t. Differences in the body are generally harder to hide than differences in the mind. That is not always the case, but the use of a wheelchair is obviously more exposing, on first contact at least, than being depressed or neurodivergent.

Thoughts, feelings, and beliefs can be hidden more easily. That comes at a cost too. Masking is something autistic people do to fit in, escape derision, and perform belonging, but it is exhausting, and ultimately it feeds the narrative that being different is synonymous with being defective.

Concealment feels safer, but it isn’t. The more we disguise and compartmentalize our vulnerabilities, the more these hidden parts of ourselves calcify into the belief that we are fundamentally unlovable.

This happens whether the shame is mind-based or body-based.

For the most part, though, now that I have drawn the distinction, the split between mind and body is mostly pure fiction. The shame experienced about the body manifests almost identically to the shame experienced about the mind. Same weapon, different targets. Shame doesn’t respect the arbitrary boundary we draw between the two. It winds its way through both.

Justina

I think shame is the same in both cases, but its mechanism functions through slightly different paths. Physically disabled people might be ashamed of the way they look, or ashamed to ask for help, because of how society sees them. That shame is born from enduring intrusive stares, overt discrimination, or being forced to ask for basic assistance in a world built without them in mind.

People with invisible disabilities, and here I am thinking specifically of mental disability, appear healthy from the outside, yet they feel ashamed of their own minds because they don’t fit neurotypical standards. The mask of normalcy eventually slips and radically changes the social dynamic.

I can speak to my own experience of carrying something invisible.

Whenever I speak to people, I put a smile on, I nod, I appear friendly. They do the same. Yet a thought lingers in my mind: how long is it going to take them to change? And they do change, they always do.

In my experience, disclosing an invisible disability alters the social dynamic entirely. Suddenly you are perceived as unstable, or uncomfortable to be around.

Body shame and mind shame stem from different circumstances, yet they lead to the same mechanism. Both produce the same secondary wound: social isolation and alienation.

3. What is the function of shame, psychologically versus philosophically?

David (psychological)

Functionally, shame evolved in large part to keep us inside the group, because for most of human history exile meant death. Shame is the signal that we are at risk of being cast out, that there is something about us that threatens our belonging. That is why it targets the self rather than the behavior. Guilt, by contrast, is focused on having done a bad thing, and it points toward repair. Shame says I am bad or defective and I need to hide to protect myself, or else. Guilt can be processed through action. Shame just wants you to disappear and hide.

Shame is functioning properly when you feel the pain, which is essentially a warning sign that there is a threat of excommunication. That can be useful in itself. The problem is the way the alarm gets calibrated very early in childhood, so that it becomes an organizing principle instead of an occasionally useful protective mechanism.

Shame belongs in the back seat, but it so often becomes a back seat driver. I spent my childhood hiding my condition in the service of belonging. Then, as an adult, when it was no longer possible to hide, the shame just became more “sophisticated”, masquerading as discernment, telling myself I didn’t want to participate in social situations because I had high standards, when really I was protecting myself from being seen.

The paradox is that the function of shame is to protect our belonging, but the faulty wiring ends up isolating us further. Shame makes us hide the very things that, under the right circumstances, if shared, would actually deepen our sense of connection. This is why shame heals almost exclusively in relationship, by being witnessed and not abandoned. The cure runs through the wound.

Justina (philosophical)

In philosophy there are different ways of understanding shame. What I see in disability discourse is shame functioning negatively: it forms a narrative and a distorted image of oneself as deformed or monstrous, and therefore not worthy in the eyes of society.

Shame splits the subject. The subject becomes divided into the one who judges, who represents society’s prejudices, and the one who is judged, the subject herself, seen as lacking and lesser because she cannot fit societal and cultural norms.

The antidote to the negativity of shame would be Eve Sedgwick’s affective theory of shame and queer identity. Sedgwick related shame to performance, arguing that it is theatrical and politically charged in constituting queer identity. Shame disturbs the identity-constituting process, yet it also shapes the formation of identity.

In the moment of shame, one has the experience of being someone, which makes shame function as a threshold between sociability and introversion, a place where the person establishes a relation with herself precisely through feeling it.

For Sedgwick, shame is not merely a disturbance; it becomes a reframing, a refiguration, where a new identity can be constructed. But the person has to use shame to her own advantage, to shape her identity and avoid falling into the political trap of a monstrous one.

Where We Landed

We started from different places and ended up describing similar mechanisms. David came to shame through his body and clinical work, Justina through her mind and philosophy, and somewhere in the middle the distinction collapsed.

Both of us learned its mechanism the hard way, and both of us found that understanding the mechanism helps to loosen its grip.

David locates the healing in relationship, being witnessed and not abandoned. Justina locates it in reframing, turning shame into raw material for a different identity rather than a verdict. Either way, the move is the same, out of hiding.

Shame survives in concealment and dies in the light. The cure runs through the wound, and you cannot get through a wound alone or in the dark.

I hadn’t traveled abroad in seven years. I hadn’t traveled at all for five, until last fall when we went to visit close friends in Seattle. I had written it off because it became too difficult, exhausting, and too much to figure out logistically. It’s still all those things. But my wife and I just got back from five days in Mexico City, visiting friends we hadn’t seen in over twenty years.

A lot of Americans travel to Europe and never think about this wild gem of a city a couple of hours away. Over thirty million people, the most insane traffic I’ve ever experienced, Aztec ruins in the city center, beautiful parks, tree-lined streets, incredible food, and the warmest people. My wife is Peruvian, and I became fluent in Spanish speaking with her. Between the language and the friends, we didn’t feel like tourists.

Our Friends

We met these friends when we lived in London twenty-five years ago. She was the witness at our civil wedding ceremony. We lost touch for a while and reconnected over the last few years. The last time we saw each other in person, our son was a baby. He just graduated from college last month. They have two teenagers now.

The last time they saw me, I was walking all over town, going up and down the stairs to the Silverlink train, living in a body that could do relatively anything.

Being Cared For

I was anxious before we went to see them, and anxious for them to see me. They were about to see my world, the full version, up close, wheelchair, leg braces, and pain.

After a few days, my friend was taking my shoes off at the end of the night and massaging my shoulders. They had a pee bottle ready so I wouldn’t have to get up every time I needed to go.

These are people I hadn’t seen in twenty years. And within a few days, they were doing the kind of care I usually only let my wife and my caregiver do. It wasn’t awkward either, no sense that I was taking too much.

I’ve written about feeling like a burden, about how hard it is for me to be cared for without keeping track of what I’m costing the people around me. This was different. I didn’t feel like a burden. I felt held.

The Body, Still

It wasn’t easy on my body. The wheelchair I use isn’t built for all-day use. There’s no upper back or shoulder support. After a couple of hours, I was in real pain. I’d bought a bottle of Tramadol to get through the nights. The pain was the hardest part, because it persisted no matter how good the day was.

My wife found a place to rent a recliner, one for the hotel and one for our friend’s house, which helped my circulation. I was lucky to find a hotel with the best accessible room I’ve ever stayed in.

But none of the planning erases the basic fact that travel accentuates every limitation. The inaccessibility is everywhere, and it stacks on top of my body that’s already operating beyond maximum capacity.

There was one spot in the city center, at the Cathedral, with a ramp, and right in front of the ramp, was a gap too wide for any wheelchair to cross. It was so absurd I laughed. That’s the reality in so many places. Someone builds the accommodation and forgets the body it was built for.

Frida

We went to the Frida Kahlo museum, called the Casa Azul, where she lived, worked and died. I saw a picture of her sitting in her wheelchair, her crutches, her body brace that she painted, the corsets she wore to hold her spine together, and photographs of her painting in bed.

I knew some of Frida’s story. I’m reading her biography now. She had Polio as a child that crippled one of her legs. Then, when she was eighteen, a streetcar accident shattered her spine and pelvis, and drove a handrail through her, breaking the same leg. She had countless surgeries, wore body casts, and endured chronic pain. Near the end of her life, her leg was amputated below the knee.

Frida started painting seriously while she was bedridden after her accident. Her family concocted an easel so she could work lying down in bed, placing a mirror above her. I saw the easel via video because her studio was upstairs. A museum guide sat with me in the garden and gave me a private tour on her iPad.

It became increasingly difficult for Frida to go out into the world, so she turned inward, and painted herself. Her broken body became the focus of many of her self-portraits, because it was the subject she couldn’t get away from.

I don’t want to make her into something she wasn’t. Frida had a complicated relationship to being disabled. That’s a big reason that I’m so drawn to her. She wore long traditional dresses to hide her legs and she chose clothes that drew the eye toward her torso and away from what she didn’t want people to see. Frida didn’t wear her disability as a badge of pride. Rather, it was something that she carried, hated, hid, and survived.

At the same time, she also took her corset that held her spine together and painted on it. It wasn’t that she necessarily made peace with it, but she did make it her own. She used it as a subject to create and that was fundamental to how she remained vital and alive. As long as she could paint, she could live. She didn’t try to resolve the tension between hiding and creating. She embodied it.

Frida turned her brace into a canvas. Writing has increasingly become a space for me to transform my loss into something that feels generative. I’m not comparing myself to Frida, but what I identify with is the honest and authentic way of not allowing our broken bodies to be the only thing in the frame.

Back Home

It feels like it was just yesterday that we were having dinner with our friends in our flat on Constantine Road, except my body is a completely different body than the one they remember, but that didn’t change anything that mattered.

We just arrived home yesterday. I’m tired and it will take days to recover from, and I’m deeply grateful. I’m grateful for our beautiful friends who took such good care of us, for my wife, who found the recliners and without whom none of this would be possible, and for the magical portal of being seen across twenty-five years by people who looked at my body and still saw me.

Who in your life sees the continuity in you that you can’t always see in yourself?

There’s an invisible hierarchy of disability that nobody admits exists, implicitly determining who gets sympathy, accommodations, and who has to fight just to be believed.

I’m a straight white man with a visible physical disability. I’ve never had to deal with gaslighting or proving my condition is real. My doctors listen to me. When I show up with research and my own assessment, they take me seriously. They defer to my understanding. I know how rare that is.

I’ve met a lot of people, including here on Substack, who have had very different experiences. You inspired me to write this piece in solidarity and with deep compassion for how hard you have to work to be seen and believed.

Here’s how the hierarchy works.

I want to be clear that the point isn’t which condition falls in which category. Yours may fall in between or move between tiers. The point is that the hierarchy is invisible but real, born from biases, prejudices, projections, stereotypes, and fears that perpetuate ongoing oppression. And like homophobia and racism, we inevitably internalize it. That internalized ableism becomes shame and self-doubt, and it’s corrosive.

Tier 1: Terminal Illnesses

At the top of the hierarchy, crip royalty, are the terminally ill.

All our days are numbered, but they have what most of us fear the most, a death sentence and a more concrete end date.

Tier 2: Chronic Degenerative Diseases

Second tier are the chronic degenerative diseases. I’m in this category. We have visible symptoms. A lot of us are in wheelchairs. We don’t have direct death sentences, but our lives will likely be cut short by the secondary complications that come with degenerative disease.

My mom had the same type of MD I have. She died six days after turning 69. Her father died at 96. He didn’t have MD. That’s the difference.

We’ve got our handicap placards. We make people uncomfortable. We get to cut lines, but when we get a table, there’s no place to sit.

Tier 3: The Static Physical Disabilities

Third tier disabilities are physical and diagnosed, but not degenerative. They’re predictable, more or less static, so people can get used to them. But it’s still awkward, uncomfortable, and requires accommodations.

Tier 4: The Invisible but Diagnosed

Fourth tier disabilities are diagnosed medical conditions that aren’t visible or obvious. Doctors won’t dismiss you. They can diagnose you. That matters. There’s usually a treatment available, medication, or something.

You’re likely able to work and walk. Your life expectancy is close to normal. You can pass as non-disabled when you need to. That’s a “privilege” the higher tiers don’t have.

Tier 5: The Neurodevelopmental and Mental Health

Fifth tier includes intellectual, developmental, and mental health disabilities. These are harder to see, harder to diagnose, and easier for people to dismiss as personality quirks, bad behavior, or lack of discipline.

There’s often genetic predisposition but no clear test. You have to prove it over and over. And even when you prove it, people still think you could try harder if you really wanted to.

My daughter falls in this category and I have seen and experienced how confusing it can be to have an invisible disability that, amongst other things, invites all sorts of unsolicited projections and opinions from people who are often well-intentioned, but have no clue what they’re talking about.

Tier 6: The Contested and Mysterious

Sixth tier includes the more mysterious or acquired conditions that are more difficult to diagnose. A lot of these people are dismissed or accused of malingering. They bounce around from doctor to doctor until they find one who believes them. They’ve been dismissed for so long that secondary mental health issues are almost guaranteed.

They’re usually the angriest because they’ve had to fight just to be believed. Anger becomes the only tool that works.

A lot of the loudest and fiercest voices in the disability movement come from here. They’ve been forced to cultivate a loud voice or else they won’t be heard.

What the Hierarchy Does

Sympathy flows downward. The higher you are in the hierarchy, the more sympathy you get. The lower you are, the more you have to prove you deserve it.

Accommodations follow sympathy. Terminal and degenerative disabilities get accommodations more easily. Invisible and contested disabilities have to fight for everything. Tier 1 gets a hospital bed. Tier 6 gets accused of being dramatic.

The hierarchy determines whose pain is legitimate and whose is suspect, whose exhaustion is real, whose is laziness, and whose needs are reasonable and whose are excessive.

The hierarchy is a symptom of ableism, letting non-disabled people decide to accommodate “real” disabilities while dismissing others, creating a false dichotomy where some disabled people are deserving and others are not.

A dynamic is then created where we are against each other, comparing our suffering instead of recognizing that all of us are excluded by the same systems.

The Price We Pay

I’m in tier 2, degenerative, visible, dying slower than tier 1 but faster than most. When I’m in my wheelchair out in the world, I’m “really” disabled. People hold doors and often offer help.

When I was able to walk, people would stare at me differently. I remember walking into a bathroom standing at the urinal peeing and some guy walked in behind me and commented on how much I had been drinking because of the way I walked.

The hierarchy is real and it’s exhausting. No matter where you fall, you’re still navigating a world that wasn’t built for you, fighting for access, explaining, justifying, and proving.

The hierarchy just determines how hard you have to fight and how much you have to prove.

What This Means

No matter where we fall on the invisible hierarchy, we’re all facing exclusion, deserve access, fighting the same ableist systems, and navigating the interminable challenges of visibility, legitimacy, and access.

The hierarchy makes ableism easier to maintain, because if we’re busy comparing whose disability is worse or more legitimate, we’re not focused on the systems that exclude all of us.

The Double Threat

I believe this invisible hierarchy, combined with the existential threat we pose to able-bodied people, are the two major reasons the disability movement doesn’t have the same momentum as other civil rights movements.

Anyone can become disabled at any time from a car accident, a diagnosis, or a fall. Able-bodied people know this, even if they don’t say it out loud. We remind them of their own vulnerability, their own mortality. That’s terrifying, so they keep us at a distance.

And the hierarchy makes that distance easier to maintain. It divides us. It makes us compete for legitimacy instead of building collective power. As long as tier 2 can look at tier 6 and think “at least people believe I’m disabled,” we’re not organizing together. We’re not demanding systemic change. We’re fighting each other for scraps of sympathy and accommodation.

Other marginalized groups can’t cross into the dominant group. A Black person can’t become white. A queer person doesn’t become straight. But able-bodied people can become disabled. Anyone can join us at any time. That fluidity is our potential strength and our actual weakness. It means able-bodied people will do anything to distance themselves from us, including maintaining a hierarchy that keeps us divided.

That’s why naming this hierarchy matters. That’s why recognizing it isn’t just interesting, it’s essential. We can’t dismantle ableism while we’re busy ranking whose suffering is legitimate. We can’t build a movement while we’re fighting over who deserves accommodation.

Every tier faces exclusion. Every tier deserves access. The hierarchy serves ableism, not us.

Where do you fall in the hierarchy?

How much of your life is spent proving you’re disabled enough to deserve accommodation?

A few weeks before my son’s college graduation, he came home and told us about the field tradition after the ceremony where all the families go down to the field for pictures and to meet everyone. He forwarded us the university’s email so we could follow up with questions about accessibility.

What I Asked For

Before the graduation ceremony, I called his university multiple times to ask about accessibility. I was transferred repeatedly between departments. Eventually, someone left a message saying my information had been passed on to the commencement team and that someone would follow up. No one ever did.

My concerns were basic and straightforward. The ceremony was outdoors, and as is common in Houston in the spring, thunderstorms were in the forecast. Electric wheelchairs cannot sit out in the rain. I also needed information about accessible seating, and, how we would be able to join our son on the field after the ceremony.

What Actually Happened

The accessible seating section was too small, very far from the stage, and couldn’t fit all of the wheelchair users who arrived. There was no companion seating available. A woman behind me in her wheelchair could not see the stage at all.

The worst part came after the ceremony. Before the ceremony even began, we asked staff how we were supposed to get down to the field afterward. We asked again when the ceremony ended. Meanwhile, our son was texting us from the field, asking us to make sure we found the way downstairs so we could join him for pictures and to meet his friends and their families.

My wife asked six different people, including ushers, security, and paramedics, how we could get down to the field after the ceremony ended. No one knew. Several people incorrectly told us families might not be allowed onto the field because of the weather, which turned out to be false. Other families made their way down while we remained stranded on the concourse.

There was no information, no clear answers, no accessibility procedure, and no staff member prepared to assist wheelchair users.

My son had to run up to find us and then run back down to try to get pictures with his friends before the moment disappeared. He missed most of the photo opportunities with his friends, and we couldn’t participate at all. The next day, he was heartbroken. He said he felt robbed of something.

What This Actually Looks Like

I want to be really clear about what happened at the commencement, because ableism is often invisible to people who don’t experience it.

This is what inaccessibility typically looks like. We were left on the concourse, me in my wheelchair, my wife staying by my side, while other families gathered together on the field below. We repeatedly asked staff where we were supposed to go, only to be met with confusion and no answers while the moment came and went.

Our son had to be separated from his family while others moved freely through the field taking pictures, hugging, and celebrating together. A precious moment was lost because accessibility had not been considered at all.

This may not have been intentional, but intent does not erase impact.

The unreturned calls, lack of planning, undertrained staff, inadequate seating, and complete lack of any protocol for wheelchair access created an exclusionary and ableist experience. The implicit message that was communicated, whether intended or not, was that disabled people and their families did not matter.

What This Means

My son’s complicated feelings about my disability didn’t come from nowhere. They came from living in a world that excludes disabled people routinely, systematically, and without accountability.

I’ve written to his university’s leadership outlining what happened and requesting accountability and systemic change. Future graduates and their families deserve ceremonies that reflect the inclusion and dignity the university claims to value.

But the impact on our family, on my son’s graduation, on the moment we should have shared together, cannot be undone.

The Paper Cuts

This kind of exclusion is typical. It’s the kind that can easily be overlooked or dismissed. Ableist exclusion is usually not egregious. It’s more like thousands of little paper cuts.

This was a bigger paper cut relatively speaking, but I’m used to them. My skin is calloused. I wasn’t shocked and appalled. I questioned my own response, asking myself if I did something wrong. Maybe it was my fault. Maybe I’m blowing it out of proportion. It’s not the end of the world.

When I told people what happened and they got angry, I found myself feeling self-conscious, qualifying, saying it was still a beautiful moment.

That’s the thing about paper cuts. They don’t bring you to the ER. They don’t require overt care.

Having witnesses there and seeing how heartbroken and upset my son was the following day when we spoke about it helped to diffuse the gaslighting that I, the internalized ableist, was doing to myself.

Thousands of paper cuts add up. There’s a price. It’s not just the callouses. The callouses mean you get used to it, expect it, and ultimately feel like you deserve it.

Feeling like a burden fucking sucks. I have so many needs and they’re only expanding. My needs require human hands and money to pay for them. I need help cooking my food, showering, getting my shoes on, driving. I’m still able to stand on my own and use a rollator in the home, but once the strength to stand goes, the needs will increase exponentially.

We’ve got a daughter who has a lot of needs. My perimenopausal wife is in full anger mode about all the self-sacrificing she’s done her entire life, some of that on my behalf. She’s fed up.

Our main caregiver just got engaged and won’t be living with us much longer. She helps me with the majority of my ADLs. I feel comfortable with her. We have a flow together.

Flow means she knows how I need to be positioned in the shower, the exact angle my feet need to be when putting on my shoes, when I need help and when I want to do things myself. She knows not to hover or make me feel more dependent than I already am.

That’s going to be gone soon. Starting over with someone new means months of training, months of feeling more vulnerable than I already do, months of explaining my body to someone who doesn’t know it yet, and years of developing trust and intimacy. That’s a tremendous loss for me.

The Tax

One really shitty thing is that because I require so much help, I don’t feel entitled to anything more.

My wife went to Mexico with friends for eight days. She had friends here from Peru for five days. She’ll go by herself for five days to New York over the summer. I can’t travel by myself. I can’t ask for that. She gets to go. I support her and encourage her genuinely because I love her and want the best for her and I can’t imagine saying I’m taking off for eight days.

The disability tax is real. It’s the price we have to pay to level the playing field. It’s not just the money. It’s the time spent coordinating care, training caregivers, managing insurance, advocating for accessibility, and explaining my needs over and over.

It’s the endless calculations: Can I go there? Will there be accessible parking? Will I need help? Who can I ask? What will it cost them?

It’s also the emotional labor of making everyone around me comfortable with my discomfort, reassuring people that I’m fine when I’m not, and minimizing my needs so others don’t feel burdened by them. All of this comprises the disability tax and it never stops.

What I Do Anyway

I push myself to work as hard as I can to help support our family. Even when I’m exhausted, I’m present and engaged with our children.

I wish people could live just one day in my body. You know what would happen? You’d be immensely grateful for yours and you’d be in awe of the shit I do, the way I show up for my clients every day, for my wife, my kids, my executive functioning. I genuinely can’t believe I’m able to do it all myself.

And I’m grateful. I mean truly grateful. I’m grateful for my family, friends, privilege, work. I’m more invested in living than I’ve ever been in my life. I’m a lifeline for my daughter. I want to be alive and thriving for as long as I can.

This fucking body I’m living in, Jesus, it’s just pushing me to the limit day after day and it has made me grow beyond what I could possibly imagine and I love that part. But I still feel like a burden.

The Inequality

I don’t want to keep feeling like a burden. I know I have so much to offer, but it’s hard not to weigh it against what I take.

Not only would I love to be able to take a trip to Mexico by myself, I’d like to feel entitled to, not entitled in a bad way, just that I can do it without taxing someone else.

In the documentary Life After, about right to die legislation in Canada, a man with muscular dystrophy was pursuing assisted suicide when his mother was no longer able to care for him because he didn’t want to be institutionalized.

I’m just one fish in a sea of inequality. I know that.

The difference between me and that man isn’t that I’m stronger or more resilient or have a better attitude. The difference is privilege. I have money for care, a support system, and options he didn’t have.

But even with all that privilege, I still feel like I have to earn my place, work twice as hard to justify taking up space, and that my needs are an imposition.

What’s Real and What’s Story

When I talked about this with my mentor, he asked me to separate two things.

First, there’s what’s real. The burden of disability is real. My body requires care. The financial cost is real. Almost half our expenses are care, health care, and therapy. That’s not something I can change or dismiss or explain away.

Then there’s the story I’m telling myself that says because the burden is real, I can’t ask for anything else. I’m doggy paddling as fast as I can just to keep my head above water and I don’t have anything else coming.

He asked me if my wife ever said I couldn’t ask for more. She didn’t. She loves me. She wants things for me too. She wants me to work less and hates to see me so fatigued.

But I feel like I have to work really hard to have a seat at the table. Even if it’s tiring and fatiguing, I push myself, because if I didn’t, would I still deserve to be here? That’s the story and it’s operating whether I acknowledge it or not.

The Isolation

My mentor asked me what it would be like if it were reversed, if she were the one with muscular dystrophy and I were caring for her.

I said I would never want her to feel like a burden. I would be very matter of fact about it. The disability isn’t something we choose or can control.

I wouldn’t want her deciding what she can or can’t ask for based on what she thinks is too much for me.

But that’s exactly what I’m doing when I withdraw and don’t express myself. I’m deciding for her, estimating where she is in regard to the burden of my body. I’m managing it internally, by myself, so she doesn’t have to carry more. That’s what feels so deeply isolating.

He said the hardest part is always the isolation. Nobody else knows how I feel, nor could they, especially when I don’t tell them.

He’s right. We’ve been together almost 25 years. When we started, I told her I had muscular dystrophy, but I was able-bodied then. Neither of us knew what I’d be like at 50.

She’s in it with me, completely, in the trenches in a way no one else knows. We’ve spent half a lifetime together. She’s had a front row seat the whole time. If anybody can understand, she can and I’m often managing this feeling alone because I don’t want to burden her with the fact that I feel like a burden. That’s fucked up.

The Practice

I don’t want special treatment. I certainly don’t want pity. I just want to stop feeling like my existence is an imposition.

I want to stop weighing what I offer against what I take.

I want to stop feeling like I have to overcompensate, overextend, over-perform just to justify needing help.

I want to feel like I deserve a seat at the table without having to work so damn hard to earn it.

My mentor reminded me that I’m not asking for something concrete in this moment. I’m just sharing the feeling of what it’s like to not be able to ask. That’s something I could share with my wife so I don’t have to do it alone.

He said we can make it through anything if we don’t have to do it by ourselves. That’s always the hardest part, the isolation, the sense that nobody else knows how I feel, nor could they.

He said he wouldn’t want his partner walking on eggshells, thinking anything more would be the straw that broke the camel’s back. He’d want them to be honest. He’d want to know, and if I were her, I’d want to know too.

So maybe the practice isn’t just softening to the burden, but also softening to being known in it, letting her see this part, trusting that she’s strong enough to hear it, and not deciding for her what she can handle.

It’s true that the world isn’t built for people like me. It’s built for people who can take care of themselves, don’t need help, and aren’t burdens.

No matter how much I do, how hard I work, or how much I give, I’m still living in a body that needs more than it can provide for itself.

That’s the reality, and it fucking sucks, but I don’t have to carry the story about what I deserve on top of that reality, and I definitely don’t have to carry it alone.

What are you carrying that makes you feel like a burden? And who have you decided can’t handle knowing about it?

It feels like yesterday when we dropped you off at school. That was one of the hardest days for me. It hit me like a tsunami the night before as I was getting ready to fall asleep and the tears just started pouring out of me and I was wailing.

That was a little less than four years ago, but I woke up early this morning with memories from when you were born.

The labor was long. We spent a few days at the Royal Free Hospital in London. I took a bath in the birthing pool. Mom paced the halls in her gown with Mamina. I saw you enter into the world and cut the umbilical cord and made sure the nurses followed the steps to gather the cord blood for storage. You were having trouble latching on to feed at first and the nurses were a bit rough and impatient. I said to mom we’ve got to get the hell out of here.

When we finally did leave, I remember so vividly standing outside the hospital in the morning, holding you in the car seat, watching people walking by on their morning commutes, absolutely confounded by the fact that the world had kept spinning while we were in the midst of such a life-altering experience. But people were going about their business and the sun had apparently set and rose all the days we were inside the hospital.

I remember sitting at my desk overlooking the little garden of our flat with an apple tree, the grass littered with apples. John, who worked at the corner shop across the street, came by periodically to collect the apples to bake pies. I spent hours sitting at that desk, with you on my chest, playing music from my eMac computer. Still Fighting It by Ben Folds.

Good morning son, I am a bird, wearing a brown polyester shirt.

Kissing your head every time I’d gather my breath, singing softly in your ears.

I loved changing you. I’d hold your ankles together with one hand like a chicken and lift your legs to wipe. You never once peed on me.

Sitting next to the bath with a towel in my lap ready to receive you when mom finished bathing you in the grey bath seat we borrowed from a friend.

That first year, while we were still in London, I was working on my dissertation and finishing my clinical training. I used to take the night shifts with you, sleeping on my chest, on my laptop watching British Big Brother.

Sometimes I’d strap you into the Baby Bjorn and take you to Starbucks with me to write or to the pub for a quick pint if you were sleeping.

I remember the first restaurant we took you to across the street from our flat. I think it was Turkish. We were so nervous you’d wake up and start crying. Mom sat down on the curb outside to breastfeed you.

Then we left London, spent six months in Lima. You wore a Superman costume and always wanted to sit in the driver’s seat of mom’s old red Honda Civic. You called it ca-ca.

We moved to New York. Stayed in Papa’s apartment the first year while we settled and figured out our next steps. You got croup and it scared the shit out of us. We were so young, in many ways still kids ourselves.

Our first apartment on 90th Street. Asphalt Green Park, fried olives at Cavatappo Grill, Pound Ridge with Grandma and Grandpa. Phinny. Beyblades. Pokémon cards. School. It was hard for you to separate at first. Sawyer and Mark. Sushi on Wednesdays with Grandpa. Your sister was born.

It surprised me when you said you wanted to give the graduation speech for elementary school. You were becoming a new version of yourself, one that became incredibly self-motivated as we moved to Austin and you left a lot of your world behind. That wasn’t your choice. It wasn’t easy, Eric dear.

I got my first wheelchair when we moved to Austin. You liked your school, but they weren’t your people. Then Grandma died. Covid hit and we spent a lot of time together watching movies and shows like Gilmore Girls and Stranger Things. We tried therapy, but you did not want it at that point. Your sister took a lot of space and you spent more time with me, and in your room. We didn’t realize just how hard all of this was for you, how much you were carrying.

You became a black belt in Taekwon-Jitsu. You started lifting weights and getting fit. You started studying Mandarin. You found your people more later in high school, but we were such good buddies. I think that made the transition to college a little harder for both of us.

I remember hearing you scream when you found out you got into Rice, running into our room in disbelief.

Starting at college first semester wasn’t too different from starting kindergarten. It took some time to warm up and you came home more frequently, but that quickly changed and you settled in and worked your ass off and made amazing friends and studied abroad and visited thirteen countries while you were there. You started therapy and started expressing yourself more. You grew into the version of the young man you are today, prioritizing your friendships, becoming a social butterfly like your mother, sensitive, kind, with deeply held values, loyal. Cooking, DJing, learning salsa. Ready to start new adventures with a job in NYC next spring but before that you’re going back to where it all began, to London-town.

I’d be lying if I said it wasn’t bittersweet. It’s the way it should be and I’m so beyond excited for you and proud of you, and I miss seeing you every day, joking our jokes, having meals together, watching movies, loving up the dogs. It’s the way it should be and that means it is both grieving the childhood that is over and celebrating the young adulthood that’s emerging. It’s you leaving us behind and knowing you always have a home to come back to. It’s new adventures, friendships, experiences, falling in and out of love.

My boy:

Nurture your friendships.

External validation is seductive. It’s a moving target that feels good when you get a hit, but it’s short-lived and leaves you jonesing for the next one.

The comparing mind is the companion to external validation. It leaves you feeling perpetually in not enough mode.

Always ask yourself why you’re making a decision. Are you doing it because it feels right in your heart or because you feel like you should? Ask yourself if this will matter ten years from now or on your deathbed.

New York is a great city and it’s also a playground of distractions. It’s more easy than ever to get lost and stay lost in distractions. That’s a recipe for emptiness.

Put time and energy into a practice like meditation that is focused on observing and presence. It’s a muscle that needs to be built and trained and nurtured.

Be humble. Even successful people who think they know so much, know so little.

Most things that seem so real and important are illusions. The very self you’re cultivating and curating is an illusion.

Be vulnerable.

Take risks.

The only thing that will really matter when your life is ending is how you have loved. Love big, as big as you possibly can.

I’m closing my eyes. You’re on my chest sleeping. I’m at my desk looking out at the garden, the sound of the train pulling into Golders Green Station, the apple tree. I put Still Fighting It on my eMac computer.

Good morning son

In 20 years from now

Maybe we’ll both sit down and have a few beers

And I can tell you ‘bout today

And how I picked you up and everything changed

It was pain

Sunny days and rain

I knew you’d feel the same things

I love you, my boy.

I’m at a different place with desirability than I am with self-compassion.

With self-compassion, I’ve moved through the stages. It started as an intellectual concept, something I understood theoretically but didn’t feel in my body. I trusted that some people experienced it and I wanted to experience it myself, so I sought places to learn and cultivated a practice. Eventually, I was able to experience a felt sense of self-compassion, understanding it viscerally in the heart instead of just the head.

With desirability, I’m stuck at the intellectual phase. I understand that desirability can look like many different things, that it can be expansive, but I hold such a deeply rooted felt sense of lack of desirability in my body that it feels like it precludes the possibility of expansiveness.

I can’t seem to cross from understanding it in my head to feeling it in my body.

Radical Self-Honesty

In part, I attribute this to what I call radical self-honesty, which to an extent is internalized ableism dressed up as clear-eyed realism.

The voice says that I’m not allowing myself to labor under the delusion that my broken body can be the object of desire or even participate in a larger enterprise of desire. It says that it’s protecting me, keeping me from false hope, humiliation, and the pain of wanting something impossible.

What it’s also doing is limiting me in a locked story about which bodies are allowed to be desirable. It’s limiting the scope of desirability.

The Ableist Story

The story is that manly desirable bodies have muscles, vitality, and virility. Desirable bodies can move in certain ways, perform in certain ways, and look certain ways. Desirable bodies don’t need help getting out of bed, require assistance showering, or need tape on their eyes at night to keep them shut.

This is deeply internalized ableism and if I’m being totally honest, which I’m trying my best to be, feels fundamentally true to me. I see the ableism piece clearly. I can name it and I still can’t shake it. I cannot separate the internalized ableism from what feels fundamentally true. I know there is a gap there, because I do not feel this way about other people. I do not feel that it is impossible for someone with a disability to be desirable. I feel that way about my own disabled body.

I feel very connected to my masculinity and vitality. I feel very desirable as a person. But my mind’s relationship with my body does not want to let go of the impossibility of sexual desirability. I hit a brick wall when it comes to feeling that desirability can somehow transcend the body that I live in.

I understand that this belief is severely limiting and that it’s real but not true, but I have yet to transcend that territory into more fertile ground.

The Protective Function

As aforementioned, the radical self-honesty and clear-eyed acknowledgment that my body is not desirable, serves a protective function.

If I accept that desirability is impossible, I don’t have to risk wanting it. I don’t have to risk the vulnerability of feeling desire and having it go unmet. I don’t have to risk being seen as delusional or pathetic for believing my body could be the object of someone’s desire.

The impossibility story keeps me safe. It also keeps me stuck. It muddies the water of my own felt sense of desire, something I’ve written about before. When you’ve decided your body can’t be desired, it becomes harder to feel your own desire without shame wrapping around it immediately.

What I Know and Don’t Know

I’ve seen how profoundly limited many men are in terms of their capacities to connect and communicate and relate in ways that feel desirable by women. I feel more capable and confident than most in that department.

I also know that capability and confidence don’t override the ableist story about which bodies are allowed to be sexual and they don’t override my personal narrative about my own desirability.

I’m learning that in my current situation, I can stick with the story of impossibility, or I can practice “I don’t know” mind.

“I Don’t Know” Mind

“I don’t know” mind is what I’m trying to practice now, based on what I have learned in the changing relationship with my body.

With my body, I moved from shame and pain as organizing principles to a place where they’re still present but no longer running the show. I didn’t get there by transcending or fixing or making permanent peace. I got there by developing a relationship with my body, learning to speak to it in a language it could understand, and softening to what I couldn’t change.

I didn’t know that was possible when I started. I couldn’t imagine it. My imagination was limited by the story I was living in.

The same might be true with desirability. I can wrap my head around that.

“I don’t know” mind is humbly acknowledging that there are many possibilities out there that I cannot imagine at this point.

It’s the practice of recognizing how compelling the story of impossibility is without believing it’s the only story available.

It’s the practice of staying at the edge of ableism, looking at it clearly, seeing how it operates, without pretending I’m already through it.

The Edge

I’m at the edge of ableism when it comes to desirability.

I can see my internalized beliefs clearly at this point, recognize the protective role, and understand intellectually that desirability is more expansive than my story allows.

But I can’t feel it yet the way I did with self-compassion.

I can see that my job isn’t to force the crossing, but to stay at the edge, keep looking at the story, practicing “I don’t know” mind when the voice insists it knows exactly what’s possible and impossible.

Just because I can’t imagine being desirable in my body doesn’t mean it doesn’t exist.

Maybe there’s an iteration of self that holds the possibility and experience of desirability in a body like mine, and maybe I’ll get there the same way I got to self-compassion, slowly, through practice, and by learning to speak a language I don’t yet know.

Or maybe I won’t. I don’t know. And for now, that’s enough.

What edge are you standing at that you can see clearly but can’t cross yet?

Here are some other pieces I have written about desire, desirability and shame if you’re interested in reading more:

The Marriage of Desire and Shame

Unrequited Love and the Body I Was Hiding

When Desire Feels Like a Burden

The Loss of Desirability

We all have regrets, things we said or did that we feel guilty about or ashamed of, that we wish we could completely erase from the hard drive. I certainly have plenty. Pretty much all of them are from childhood and adolescence. I still feel embarrassed about them.

One of the biggest regrets I have is how I walked away from meaningful friendships in the name of moving on. I wish I had those friendships today in addition to the ones I didn’t walk away from, friendships from my neighborhood growing up, from elementary, middle and high school and sleepaway camp.

I used to beat myself up over how I handled these friendships. I used to see on social media how some of them stayed in touch with each other and feel so badly that I didn’t.

I hurt some of them too when I walked away because I found cooler friends or changed schools. When I heard that my best childhood friend’s father died, I didn’t reach out. I didn’t know what to do and no one was telling me either.

For years, I carried this as evidence of something fundamentally wrong with me, proof that I was a bad friend. That’s regret. And it didn’t teach me anything except how to feel bad about myself.

Regret Is Punitive

Regret is characterized by guilt, shame, self-blame and beliefs and narratives that are not generous or compassionate. They’re limiting and don’t create a foundation for learning, understanding, forgiveness and growth.

What’s wrong with you? You always do this. You should’ve known better.

That’s the voice of regret. It tightens around the memory, preserves a static snapshot of an experience that’s two-dimensional and rooted in beliefs that are negative and guilt and shame inducing.

It’s punitive, not reflective. It’s not about asking questions to deepen your understanding, as opposed to delivering verdicts. The verdict always revolves around being guilty, bad, and that you should feel terrible forever.

The problem is that regret masquerades as accountability. It feels like you’re taking responsibility and taking the mistake seriously, but look at the results.

If regret worked, it wouldn’t need to be reinforced constantly, but the reality is that the same memory gets played and repeated over and over late at night when you’re trying to fall asleep, in the shower, randomly months or years later, with the same punitive script, sting, and zero progress.

This has nothing to do with growth. Rather, it’s a loop you’ve gotten good at running because some part of you believes this is necessary, like if you’re hard enough on yourself, you’ll somehow improve, and punishment equals progress.

Regret doesn’t make you improve. It makes you smaller, tighter, and more afraid to get it wrong again.

Remorse Widens the Perspective

Remorse, on the other hand, widens the perspective from a myopic punitive lens to one that makes space for understanding development and circumstances.

What’s wrong with you becomes What was happening for you that contributed to you behaving this way? Judgment turns into genuine curiosity.

Here’s some context in my situation. I wasn’t talking to anyone about my relationships. I didn’t have siblings and I didn’t talk with my parents about my friendships or my feelings. I was pretty much flying blind.

I’ve written about how I was keeping the muscular dystrophy a secret. It was a time-bomb I managed by compartmentalizing everything as a survival mechanism. Somewhere, locked in a dark room, witnessing my mom getting worse and experiencing chronic pain, must have been fear, anxiety, terror and helplessness.

I say “must have been” because I cannot remember it. The compartmentalization was effective in many ways. It kept me functioning, moving forward, and from falling apart. But it also meant I couldn’t stay connected to people in the way they needed or deserved. I didn’t have the capacity for it. I was using all my energy just to hold myself together.

I wanted to fit in, be popular, do everything all the other kids were doing. When I imagine what that child, my younger self, had to do to maintain these defenses and how alone he felt, I feel compassion.

It comes much easier now than it used to. That’s remorse. It’s not excusing what I did, or pretending it didn’t hurt people, but understanding the context, what was happening for me that made those choices feel like the only options available.

The Body Knows the Difference

You can feel the difference between regret and remorse in your body.

Regret tightens your chest, locks your jaw, makes your breath shallow. It feels like constriction, closing down, and bracing for impact.

Remorse feels different. There’s still heaviness and sadness, but it’s not tight. It’s open. Your breath slows, your shoulders drop, and there’s space to actually think about what happened instead of just attacking yourself for it.

Those are some of the somatic signals. If your body is tightening, you’re in regret. If your body is opening, you’re in remorse.

And that difference helps to determine what happens next. Regret keeps the energy trapped inside you, stuck in the loop of self-attack with no way forward.

Remorse moves the energy outward into repair, change, and actually doing something different next time.

Regret Calcifies, Remorse Generates

Regret is limiting. It calcifies around memories, keeps you stuck in the same loop of self-attack, over and over, with no forward motion.

Remorse is generative and implies the desire to understand. It’s fertile ground for integration and growth.

Remorse doesn’t let you off the hook. It removes your favorite escape: self-punishment. Because once you stop attacking yourself, you have to face the truth about what you did, why you did it, what you’re going to do differently.

And that’s where growth actually lives, not in how hard you are on yourself but in how honestly you’re willing to see.

I can’t go back and reach out to my childhood friend when his father died, or undo the friendships I walked away from. But I can understand why I did what I did, have compassion for the kid who was trying to survive with the tools he had, and choose to show up differently now.

Your Turn

What is something you feel regret about?

Can you locate the shame and the guilt?

What is the narrative and limiting belief that you’re telling yourself related to the experience?

If you felt remorse versus regret, what would be different?

What context are you leaving out?

What was happening for you at the time that contributed to your choices?

Can you find compassion for the version of yourself who did what they did?

Remember, compassion doesn’t mean you don’t hold yourself accountable. Remorse makes room for owning and understanding and learning from your mistakes.

Regret keeps you stuck. Remorse moves you forward.

The next time you catch yourself in regret, ask one question: What was happening for me that contributed to this choice as opposed to what’s wrong with me? The latter keeps you stuck. The former moves you forward.

What’s one regret you’re ready to turn into remorse?

The first time I became aware of the distinction between hearing and listening was watching the movie White Men Can’t Jump. Woody Harrelson is driving, Rosie Perez is shotgun, and Wesley Snipes is in the back seat. Woody puts in a Jimi Hendrix tape. Wesley Snipes asks him what he thinks he’s doing. Woody says he’s listening to Jimi. Wesley Snipes says, exactly, you’re listening to Jimi, you’re listening to Jimi, but you can’t hear Jimi.

I’m dating myself here. I was 17, saw it in the theatre, we were listening to cassette tapes, but that’s not the point.

The point is I never forgot this exchange.

My entire career is predicated on the art of listening, or hearing, as Wesley Snipes’s character would have said.

Listening Is Easy

Mostly anyone can listen. Listening is taking in information. You can listen but not understand. You can listen but not pay attention. You can listen while you’re thinking of how to reply. You can fake listening because you look like you’re taking it in, but you’re not listening at all.

Listening is simply the act of taking in information. Listening is passive. It requires very little energy. You can listen to music doing the dishes, listen to your partner while scrolling on your phone, or listen to your kid when you’re thinking about work.

The information is entering your system when you’re listening, and you may even be following along, but you’re not really engaged with yourself or with the other person.

Hearing Is an Art Form

Hearing, on the other hand, most people cannot hear. It’s becoming a lost art form as distractions multiply. You cannot hear yourself or someone else when you’re looking at your phone, thinking about something else, planning what to say next, or when you’re distracted.

Hearing requires your full attention, not just on the what’s being said, but on what’s underneath beyond the literal content, what’s happening in you as you take it in. Hearing is a practice that is interactive and requires effort.

Hearing in relationships

I see a lot of couples in my practice. What I see in many different permutations are people who are not hearing each other. They’re often feeling defensive and attacked and attacking back, trying to prove or win a case that cannot be won.

One person says something. The other person hears the first three words, decides they know what’s coming next, formulates their defense, and waits for their turn to speak. That’s not hearing. That’s strategizing.

Or one person shares something vulnerable and the other person immediately tries to fix it, offer solutions, make it better, or make it go away. That’s not hearing either. That’s managing your own discomfort with their pain.

Hearing means you’re actually with the person, taking them in, trying to understand them, putting yourself in their shoes even if you feel criticized or disagree.

How Do You Learn to Hear?

Is it even possible?

Do you want to?

Would you like to be able to really hear your partner, to take them in, try to understand them, put yourself in their shoes even if you feel criticized or disagree?

Would you like for your partner to do that for you?

Of course you would. Then why not be the one to start even if you aren’t getting it from them?

Hearing means you’re paying attention. You’re paying attention to what’s being shared. You’re paying attention to what’s coming up for you, including distractions, reactions, physical sensations.

You don’t decide to hear and flick a switch. Our minds don’t work that way. Presence and attention take practice. Paying attention doesn’t mean you don’t get distracted. It’s about what you do when you notice you’re distracted.

Do you bring yourself back?

Do you acknowledge the distraction?

Do you stay curious about what pulled you away?

That’s the practice.

The Layers of Hearing

Hearing is born from intention, whether it’s hearing yourself or someone else. It starts with an intention and a decision that you want to hear what’s being communicated.

If your partner is communicating something to you that’s difficult to hear, there will inevitably be resistance. The intention expands from the initial desire to hear to a willingness and desire to hear what’s arising for you in response.

If you’re not paying attention, the resistance takes over like autopilot outside of awareness. You’re no longer hearing at that point, you’re defending, deflecting, or shutting down.

Can you see why hearing is an art and a practice? It’s dynamic and layered. Some of the layers are unconscious, in the shadows.

Hearing is creative. It’s about connecting with yourself and others, understanding your myriad filters and preconceived notions and seeing what happens in the alchemy between them and new information.

You have to hold multiple things at once: what they’re saying, what you’re feeling, what you’re assuming, what you’re resisting, what’s true and what’s projection. That’s not passive. That’s skilled attention.

Hearing on Steroids

The other night, my wife was telling me about a women’s circle she held for her 50th birthday. She started to tell me about it in a way that felt like she was channeling the experience as opposed to recounting details.

She started acting out some of the interactions and what was shared. I could feel that the experience was being told from a different place, it was pouring forth from her without having to think about it. It was magical.

I felt entranced and so moved by the whole thing that I began to cry.

This is not a typical interaction. I don’t want you to think that, or that that’s what hearing is like all the time. This was hearing on steroids.

I’m sharing this example because it’s fresh in my mind and was so powerful and beautiful and made us feel closer to each other.

That is the power of hearing. It deepens connections and intimacy. It shatters preconceived notions. It bridges chasms. It embodies love.

If you make the effort to hear yourself or someone else, you’re making a statement that the energy required is worthwhile.

Hearing is generosity.

The Practice

Just like meditation, hearing is a practice. It’s not about executing perfectly every time or achieving results.

It’s about the intention to pay attention, removing external distractions and noticing internal distractions, being curious and open to what arises and letting what’s communicated impact you however it does.

You won’t always succeed. You’ll get distracted, defensive, tired, overwhelmed. You’ll listen instead of hear more often than not.

But the practice is noticing the difference and choosing to come back when you can.

Give it a try with yourself, a friend, a family member, a partner, or even a pet. Pets are communicating all the time as well.

Reflection Questions

What was your experience of being heard growing up?

Have you ever felt heard in the ways I described above?

Have you ever heard yourself or someone else this way?

Does the distinction between listening and hearing make sense to you?

If you could be heard by one person in your life, who would it be?

There’s a meditation practice called lovingkindness meditation, or metta, where you’re instructed to repeat a series of phrases directed towards yourself, loved ones, neutral parties, and people you’ve had difficulty with. Phrases like: May you be happy. May you be peaceful. May you be healthy.

I’ve tried lovingkindness practices many times and always struggled with them because I couldn’t really connect with the phrases. It always felt like I was doing what I was told, going through the motions without anything actually landing.

In my weekly meditation group last Thursday, the group leader suggested we do a lovingkindness practice, but the way she had us do it was simple and brilliant and allowed me to connect with the practice more authentically than I ever have before.

Start With the Pain

We started by focusing on what it feels like when we’re in pain, physically or emotionally, including the reactivity we experience to the pain.

For me, I focused on what it feels like when I lose the ability to do something I used to be able to do. I feel afraid that I won’t be able to do it again, that I’m getting worse, that I’ll need more help. I feel angry and frustrated. I feel a deep sense of loneliness and sadness and hopelessness.

Just sitting with that for a few minutes, naming it without trying to fix it or push it away, was its own practice.

Ask What the Pain Needs

The next thing we did was focus on how we want to respond to the feelings and reactions we have to the pain. What does that pain need to hear and feel to feel loved and supported?

Some of us can draw on experiences we’ve had when we’ve been in pain and it has been responded to by loved ones in nurturing and healing ways. Others of us don’t have much of a blueprint.

This exercise, when we’re not in the midst of an acute episode, can evoke all sorts of emotions. Maybe you don’t even know how to respond.

Maybe you can imagine responding to a loved one in pain much easier than you can respond to yourself. Maybe it unleashes a wave of sadness and grief that you’ve never been held in this way and have had to build defenses around your vulnerability, walling it off from others and from yourself.

These are the phrases that came up for me in response to my pain and my reactivity, and it’s important to include your reactivity here as well:

May you be held in love.

May you feel supported.

May you be safe.

May you feel seen.

These are all responses to how I feel scared, alone, helpless, hopeless, and frustrated when I’m struggling with a new limitation or pain.

Why This Works

After we were asked to come up with our own lovingkindness phrases following this exercise, we practiced repeating our own phrases to ourselves, and for the first time it felt real and right for me.

I felt connected to what I was saying to myself. It didn’t feel academic or intellectual. It felt like I was actually offering myself something I needed instead of reciting generic well-wishes that had nothing to do with my actual experience.

The difference is that these phrases emerged from my specific pain and what that pain actually needs, not from someone else’s template of what loving-kindness is supposed to sound like.

Your Turn

Here’s how to create your own practice:

Step 1: Connect with the pain

Close your eyes and allow an experience of physical or emotional pain to emerge. What does it feel like? What thoughts or beliefs arise? Take a few minutes with this and then write down what emerges.

Step 2: Ask what it needs

Close your eyes again and imagine responding to the pain, to the different feelings, thoughts, and beliefs that arose. What do they need? If it’s too much to imagine doing this for yourself, imagine doing it for a loved one, or a loved one doing it for you.

Take a few minutes to write down what emerged for you in response to the pain.

Step 3: Create your phrases

Based on how you responded to the pain, write down three to five simple wishes. For example:

May you be held.

May you feel safe.

May you feel loved.

May you feel accompanied.

May you feel seen.

May you feel understood.

Step 4: Practice

Once you’ve come up with the phrases that work for you, you can start practicing with them. A few minutes two or three times a day is plenty. You can do this whenever you feel sad or worried or anxious or stressed, or when you feel fine.

Try putting your hand on your heart and just allow yourself to connect with what it feels like to love and care for yourself the way you would for your child, partner, parent, best friend, or pet.

Resistance Is Normal

The key is repetition. It’s a practice. With anything new, there’s going to be resistance, and if there is resistance, just notice what comes up for you and that’s totally fine.

It’s not natural or easy for me to be doing this either. It’s much more natural and easy to be loving with others, so that’s the way in for me.

If you try this practice, I’d love to hear how it goes.

What does your pain need to hear?

The reality of your life is always now. I think there’s probably nothing more important to understand about your mind than that if you want to be happy in this world. The past is a memory. It’s a thought arising in the present. The future is merely anticipated. It is another thought arising now. What we truly have is this moment...and this. And we spend most of our lives forgetting this truth. We manage to never really connect with the present moment and find fulfillment there because we are continually hoping to become happy in the future and the future never arrives. We’re always solving a problem, and it’s possible to simply drop your problem, if only for a moment, and enjoy whatever is true of your life in the present.

- Sam Harris

The muscular dystrophy forces me to slow down. It does not force me to pay attention because it’s plenty easy to distract yourself when you’re perfectly still. It’s up to me to pay attention.

I spent more time than usual yesterday intentionally doing nothing at all. I finished what I had to do on Friday, preparing for time to do nothing. I sat in a chair in the living room and closed my eyes with the dogs, Phinny and Lily, on my lap, listening to the Carolina wren calling from the fence.

Sun, the bearded dragon, side-eyes me from her glass enclosure. The gerbils burrow furiously over my shoulder.

There’s so much to do and nothing at all.

Counting Days

Maybe there are 30,000 days in a life. When you’ve lived a few thousand and you have so many thousand ahead, possibly, a day feels like a dollar. You can spend it, lose it, tuck it away.

I wonder how many days I have left. How many do you think you have? If you knew, at what point would you start counting? If you have 3,000 days left, would you start counting? What would you do differently?

Sun is not counting her days. Phinny isn’t counting his. He’s snoring rhythmically on my chest.

What if there are only 500 days left? What would I do differently? Would I continue to work? Travel? What would I eat? Would I exercise? What would I read?

My Grandparents

The muscular dystrophy forces me to slow down. I choose to listen. Not all the time, but more often than before.

I close my eyes and a memory of my grandfather cleaning the leaves from his pool appears before me. He’s wearing a sky blue swimsuit, tufts of white hair on his chest, and a Gilligan cap to protect his shiny bald scalp from the sun. I’m sitting in a chair at a table under an umbrella eating chunky peanut butter and Tiptree black currant preserves on crackers that my grandma prepared for me.

I’m not counting my days or questioning my existence there. I’m reading a Hardy Boys mystery and drinking a Tab.

Do you know Tab? My grandparents had it on a rusty white rolling cart in their basement. Coca-Cola’s first diet soft drink. I can remember the saccharine aftertaste. I swished it around to dislodge the little chunks of peanut stuck in my teeth, unafraid of staining my teeth. The brazen recklessness of youth. Now, after every cup of coffee that I drink, I rinse my mouth with baking soda toothpaste.

Prufrock

The love song of J. Alfred Prufrock pops into my consciousness.

Do I dare? And do I dare?

Is there time to turn back and descend the stair?

With a bald spot in the middle of my hair.

Like my grandfather who has counted his final day, my head is bald.

The days are long. The years are short. My son likes to say that. He graduates from college in two months. It feels like yesterday when we dropped him off. It was the night before his first day. We were at a hotel in Houston. I was in bed with my wife ready to fall asleep. I had tape on my eyes to keep them shut, an eye mask and earplugs.

I started to cry and the tears burst forth like a geyser, loosening the adhesive of the tape. I cried so hard I couldn’t breathe. I’ve rarely ever cried like that. I didn’t understand that when you weep, your nose gets stuffed. My wife told me as she held me.

Do I dare disturb the universe?

I have measured out my life with coffee spoons (now they’re followed by baking soda rinses).

What Would I Do Differently?

How many days left? When is it worth counting? What would I do differently?

The question keeps arising, but I realize I’ve been answering it all along without knowing I was answering it.

What would I do differently if I knew I had 500 days left?

I’d probably do exactly what I did yesterday. Sit in the chair with the dogs on my lap. Listen to the Carolina wren. Close my eyes and let the memories arrive unbidden, read, write, spend time with the people I love. I’d still work, but less, still cry about my son graduating, still tape my eyes shut at night, still wake up needing help to get out of bed.

The muscular dystrophy hasn’t given me the gift, if you can call it that, of knowing how many days I have left. It has given me the gift of knowing that I don’t know, that none of us do, and that the not knowing is the point.

Sun doesn’t know how many days she has. Phinny doesn’t know. The Carolina wren doesn’t know. But they’re all here fully absorbed in their unselfconscious being.

Inhabiting Days

I don’t count my days. I’m better at inhabiting them.

Yesterday I inhabited a day as I sat still, listened and let my grandfather appear in his silly Gilligan cap. I let Prufrock interrupt with his existential questions, and I let the tears come when they came.

One of the consequences of ignoring that other beings have consciousness is that you forget you have it too. You forget that consciousness isn’t about knowing how many days you have left or what you’d do differently if you knew. It’s about being here while you’re here.

And would it have been worth it, after all?

Yes. Choosing to slow down and listen instead of distracting myself into oblivion is something I can do no matter how tired I am or physically able.

The muscular dystrophy forces me to slow down. I’m choosing to pay attention.

How many days do you have left, and what are you going to do with the one you have right now?

My relationship to my body has always been complicated. In my childhood and early adulthood it was characterized by shame and hiding. As my symptoms became worse and impossible to hide, it became more of an adversarial relationship producing pain, suffering and desperation. Only recently has the shame and the pain taken more of a back seat making room for softening and compassion and care. The stages of relationship with my body have comprised both my physical abilities at different times as well as how I have related to what was happening.

The Shame Body

The first stage lasted from birth until around 30 years old, and I call it the shame body stage.

Because the muscular dystrophy wasn’t evident early on and I was able to do a lot physically, even though I knew I had the condition, this stage was defined by hiding. Hiding the muscular dystrophy from the world and from myself, living in fear of exposure, compartmentalizing everything so I could function without falling apart.

I lived more in my head than in my body during this time, disconnected from the physical reality of what was happening or what would happen. My body was a source of danger, not only because of what I was expecting to happen over time, but because of the danger of being exposed, of people seeing what I was trying so hard to keep hidden.

This stage was also defined by quite a lot of abuse of my body in terms of how I treated it, especially the drinking and the refusal to acknowledge that anything was wrong.

The shame body is the body I was hiding from myself and from others, refusing to listen to, and punishing for existing in a way that felt unacceptable.

The Pain Body

The second stage is what I call the pain body, and it’s not that the shame went away completely, but starting in my early 30s, the symptoms started to increase significantly and it was no longer possible to hide the muscular dystrophy.

My body was betraying me and becoming a source of literal and figurative pain.

I was tripping and falling a lot, broke my nose multiple times, and was in more pain because I was pushing my body to do things it used to be able to do that were becoming more difficult. I was having to give up doing things I used to be able to do, like going up and down stairs, walking for longer distances and playing guitar.

It was a time of desperation and a manic, frantic search for ways to slow the disease down. I went to India twice and San Francisco twice to work with alternative practitioners, trying everything, grasping at anything that might stop what was happening.

It was a time of a lot of anxiety and depression and fear, still very cut off from my body and still experiencing a lot of shame, but now the pain was undeniable and constant and becoming the organizing principle of my life. There was plenty of physical pain at different moments, but the pain that I’m referring to in the pain body stage is more about the psychological pain due to the uncontrollable escalating amount of loss.

The pain body is the body I was at war with, that wouldn’t cooperate, and kept taking things away. The pain body was about trying desperately to fix or control or slow things down before it was too late.

The Last Five Years

The third phase began only in the last five years, and I don’t yet have a pithy title for it, but it has been the most transformative.

The frantic searching evolved into a deeper acceptance and grief, but the bridge between the searching and the acceptance wasn’t clean or linear. There was a period of spiritual bypass, which I’ve written about, recognizing the importance of acceptance but rushing into it without making space for the grief, loss, pain, anger and sadness.

I thought that acceptance meant being okay with what was happening and transcending the suffering. I’ve learned though that acceptance is more about making space for all of it, the grief, rage, longing and the loss, without needing any of it to be different than it is.

This third phase has opened into a deepening care for my body in terms of my diet and nutrition and exercise and my meditation practice, as well as self-compassion and the ability to nurture my body and care for it and love it.

It’s not that the shame from the first phase or the pain from the second phase have gone away, but this third phase is not defined by shame and pain. They’ve gone from being the drivers to being in the backseat, and certainly at times trying to take the wheel, but they’re no longer running the show.

Learning the Language

One of the things I’ve noticed in this third stage is what happens in my meditation practice when I ask my body to relax or let go. It feels as though I’m speaking in a foreign tongue because my body does not register the request at all.

Maybe that’s because implicit in the request is an expectation that because I’m meditating, my body should relax or soften, as opposed to inviting my body to feel safe without expecting it to respond.

What this is an indication of is just a deepening communication and relationship with my body and an investment in understanding it more. If I’m speaking in a language to my body that my body is not understanding, maybe I need to expand or change the language I’m using.

This stage feels expansive, and I would say it’s about softening, learning to care for it instead of fighting with it or hiding from it, and developing a relationship with it instead of just enduring or compartmentalizing.

It’s also about being willing to listen to it, speak to it in a language it can understand, and to meet it where it is instead of where I wish it was.

What’s Next

I don’t know what the fourth stage will be. Death and dying, obviously, at some point, but I don’t know when or how that will happen or what my relationship to my body will be when it does.

These stages aren’t clean or sequential. The shame is still very much there, as is the pain. The frantic searching hasn’t completely disappeared, but it’s more like hoping there will be a treatment or cure before it’s too late.

But something has definitely shifted in terms of how I hold all of it. I’m not hiding from it anymore. I’m not at war with my body anymore either. I’m learning to be with it, care for it, and speak to it in a language it can understand.

What excites me the most about where I’m at now is not transcending my body, fixing it or making peace with it in some final permanent way, but developing a relationship with it that allows me to live in it without shame or desperation being the organizing principles.

My body will continue to change. The losses will keep accumulating. I hope to continue to learn how to soften to what I cannot change while still fully inhabiting the body and life that I have.

What stage are you in with your own body, and what is it teaching you?

My wife turned 50 last week, which means we’re embarking on our fourth decade together, and the 50s definitely feels like the biggest one.

We met when we were 25 and now we’re both 50. Each decade we’ve lived through together has had its own character, lessons, and way of breaking us open and putting us back together differently than we were before.

The Decades

The 20s were La La Land, a honeymoon period where we were clueless and carefree, living in London, getting married in Peru, thinking we knew what we were doing when we had absolutely no idea what was coming.

The 30s were when shit started to get real. We became parents, moved to New York, started our careers, and the muscular dystrophy started getting worse. Seven years of hell trying to have another child, eventually culminating in having our daughter.

The 40s brought Austin, a new chapter, moving from manic searching for treatments to something closer to acceptance. My mother died. Olga became part of our family, creating a new way to be together. And perimenopause arrived.

The Great Teacher

Perimenopause has been up there with the muscular dystrophy as our greatest teachers, and I didn’t think anything could compete with MD as a force that transforms us and our relationship, but it has.

For Debbie, it’s been a shift into becoming a completely different version of herself, where a lifetime of self-sacrifice condensed in atomic fashion into an explosion of reclaiming power, wisdom, and embodying the divine feminine.

I never really understood that term viscerally until I watched it emerge through her, but now I see it clearly. The divine feminine isn’t some abstract spiritual concept but an actual force that comes through when a woman stops subjugating herself and starts claiming her full power.

The Foundation

This feels like the beginning of a new decade where our lived experience, our resiliency, our courage, our grief, our losses, our vulnerability, our dedication, our strength, and most of all our love for each other is the foundation moving forward.

We are no longer children or young adults. I am a fully embodied man and she is a fully embodied woman. We are disciples of our past, embracing what we’ve created and walking and rolling into uncertainty together.

What Most People Don’t Know

I don’t think most women and certainly most men are prepared or educated about what perimenopause actually signifies, just like we’re not prepared or educated to be in relationship and what that really entails.

This has made me very curious about how many couples experience this transformation. My data is limited to my family, friends, people I see in my practice, and things I’ve read, but from what I have seen and experienced, this has been a striking, profound, painful, humbling, inspiring transition.

Physiological and hormonal changes in Debbie’s body have coincided with psychological, emotional, and spiritual shifts. It feels like her body has forced her into an awareness and an immediacy that it is no longer feasible to sacrifice herself and care, give, and nurture in the ways that she was before.

Heeding the Call

Part of what has been so humbling and inspiring is how she’s heeded the call, because I imagine there are many who don’t even listen or are not able to. Seeing how she is honoring this time and how fully she’s embraced it unapologetically has been extraordinary to witness.

I told her I could see how this could be a breaking point where many couples split up, maybe coinciding with kids graduating from high school and college, which often aligns with this stage.

Perimenopause cracked something open in Debbie that has been building for decades, and what emerged is a more powerful woman who is less willing to compromise herself and claiming space she never claimed before.

Growing Together

Over the past few years, as this has been unfolding, we’ve been growing together. I love a good challenge, and this has been one of the biggest ones.

My respect for Debbie has deepened, and it feels like there’s a part of me that is truly humbly stepping aside as she claims her power in a way she never has before.

It’s kind of a shit or get off the pot thing, where I need to do what I need to do to work on what’s coming up for me including feeling challenged and destabilized at times as she becomes less accommodating and cares less about making everyone else comfortable.

I’ve had to look at my own expectations about Debbie’s role as a wife and mother, including the balance between giving and receiving. Perimenopause has exposed some of my patriarchal conditioning in ways I couldn’t avoid.

It has forced me to step up to meet her where she is now instead of where she used to be. It has been humbling and necessary and has made me a better man and a better partner.

This is why the 50s feel so different. We’re both as individuals and as a couple stepping into our power, fully committed to each other and to what’s happening between us.

I’m honored to be walking and rolling into this new decade together.

There is a voice inside my head whose sole purpose seems to be proving the thesis that I am fundamentally other and alone. It is gathering evidence all day long.

Its argument is simple. My life is radically different from most people my age because of muscular dystrophy.

There is truth to that, to be fair. It is not the whole truth, but there is enough truth to it that for years the evidence has easily eclipsed any evidence to the contrary, evidence of common humanity and belonging.

Lately I have been realizing the importance of community and belonging more than I ever have, cultivating ways to connect with others beyond my close family and friends through my weekly therapy group, meditation groups, and chronic illness groups.

The Evidence

It is true that I cannot go up and down stairs, live independently, or use my body in the many ways able-bodied people do without giving it a thought.

It is true that my dependence and challenges begin from the moment I wake up because I need help getting out of bed. I rely on my rollator to go from my bed to the bathroom to pee and brush my teeth.

I then rely on my helper, Olga, to bring me water and my vitamins, administer my anti-inflammatory eye drops, heat up my eye mask, and bring me my coffee.

I love my coffee. I used to love making it myself. The amount of time and energy that would take now, especially on days that I work, renders it impractical.

I rely on Olga or my wife to load my wheelchair in and out of the car, to help me shower, dress and undress, to get back into bed at night and tape my eyes shut so I can sleep.

I could go on listing all the ways I rely on others and that make my daily lived reality different from most. This is all fuel for that voice in my head seeking to prove I am other.

It also likes to argue that my suffering is much greater than most, that many people are cushioned by the illusion that their bodies will cooperate forever. This only deepens the feeling of otherness and isolation.

This voice is powerful. It held court for years. It is cocky and sure of itself. It has a clear mission and sticks to it.

The Counter Evidence

There are many ways my lived reality is different from most. And there are fundamental truths that betray my common humanity despite every attempt to stand outside it.

I am a son, a husband, a father, a friend. I was born into a body. I breathe. I age. I eat. I experience loss and wonder, sadness and joy.

Just as I can easily look around and compare my suffering to others who have experienced far fewer challenges, there are millions out there who could easily look at me and see my privilege, my family, my support system, and say the exact same thing, that I have no clue.

If I made a list of everything I have in common with others and compared it to the list of what makes me different, the former would exponentially dwarf the latter.

Yet this puffed up voice remains hellbent on drawing lines in the sand, on proving to myself and to the world that extraterrestrials do indeed exist and that I am living proof.

Gwendolyn

It reminds me of an elderly woman I used to see in my practice in New York, Gwendolyn. She was experiencing cognitive decline and corresponding mental health issues including paranoia. Her life was shrinking, and in response, her mind was fabricating versions of reality that placed her in the spotlight.

She was being watched and followed. She had to be vigilant because there were people out there whose sole purpose was to track her every move.

I never tried to disprove that. I did not freak out or refer her elsewhere. I kept meeting with her every week until she died. She never missed a session.

And when she revealed the part of her that was absolutely sure she was being watched, the part of me that was absolutely sure I was fundamentally different from everyone around me in my suffering took her hand and held it tightly.

Whether she or I were fully aware of it at the time or not, we were not alone.

The Truth

There is no other. The separation is in the story.

Stories require belief to feel real. Real, but not true.

I see the voice inside me now that has been working so hard all these years to prove I am fundamentally different and alone. I can understand why it thought its job was to protect me by making sure I never forgot how different my reality was.

It thought if I stayed vigilant about my otherness, I would never be blindsided. It thought if I believed I was an extraterrestrial, I could at least prevent feeling devastated when others noticed I did not belong.

But the belonging it was protecting me from was never conditional on my body cooperating. It was never something I had to earn by being less dependent, less different, or less of a burden.

The belonging is already here.

It is in every breath, listening to birdsong in the morning, having dinner with my wife, Facetiming with my friend between sessions, and sitting across from Gwendolyn and holding her hand while we both lived in our separate fabricated realities that were actually the same reality. We were two human beings terrified of being alone.

No one belongs any less or any more than you or I.

Last week I wrote about the marriage between shame and desire. This is about need. They're so closely related that distinguishing between them might be pointless, but exploring the difference helps clarify what's actually at stake.

I’m a member of a therapy group that meets weekly on Zoom. Back in July, we had our first in-person meeting in my home with just five of us. Since then, three new members have joined, and we had our second in-person intensive at my house last weekend.

It feels different to be with everyone in person. There’s something about being in my body with others that feels especially meaningful these days as I’m shedding layers of shame. I asked the new members who hadn’t met me in person how they felt seeing all of me, not just the chest-up version they see on Zoom. I love hearing honest reactions from people. I used to hope to hear them, now I ask for them. That’s part of my need to be seen and to be able to talk about what it’s like to live in my body and hear what it’s like for others.

The Baby Bird

There was a moment when some members of the group were deeply engaged in conversation and one member was sitting quietly, not participating. After a while, she started to tear up and the therapist checked in with her about what she was feeling.

She was feeling sad and alone and simply wanting to be held in that moment, the kind of holding that a little child needs, no elaborate reason for it other than that.

Group has a unique and powerful way to foster regression in people, and in the right group with a good therapist, this can be a vehicle to profound healing.

When the therapist asked my group-mate how she was doing, she started to cry. The need felt so young and primal and she became self-conscious, as though she were trying to get attention. She was needing attention. She needed to be figuratively picked up and held in that moment.

It was palpable how shame was insinuating itself around the need, like a boa constrictor tightening around something soft and vulnerable.

The therapist did a great job sensing this and slowing her down so her nervous system didn't flip, normalizing her need to be held in the moment and holding her, with all her group siblings joining her with our collective experiences with needing to be held like this.

We all have baby birds inside us, hungry to be tended to and fed. But the gaping mouths are so easily filled with shame, experienced as hideous or reprehensible, something to be locked away.

When we can notice that the need is there, have help from others to see it and make space for it, normalize it and be with it, the boa constrictor loosens its grip.

The Cradle

In another moment, I was sharing with the group about how beautiful the weekend in Seattle a few weeks ago was for me, being in my body with others, and how physically affectionate we were all being with each other.

I spoke about sitting in my chair holding different people at different times, but that it felt hard for me to imagine being physically held in that way, being cradled in someone’s arms.

A woman in the group told me she wanted to hold me like that and was picturing me lying in her lap, telling me she’s strong enough and could handle it. It felt like such a loving, genuine invitation, like something that I deeply desired, and also something I couldn’t imagine.

I said that I could picture sinking into it and just breaking down because relaxing into someone’s arms and completely letting go feels so utterly foreign to me. The mere possibility of breaking down drew the boa constrictor closer.

I've never let myself go limp and be held, never stopped holding myself up. Not even with my parents. The closest I've come is with my wife, but even with her, the person I feel safest with, I don't fully let go. It’s not rational. I don’t think it’s shameful to cry. In the past ten years, I can only think of two times I broke down. One was when my mom died eight years ago and the other was the night before we dropped our son at college.

The Snake and the Need

The pattern is always the same. The need emerges, young and vulnerable, and the shame follows immediately, wrapping itself around the need before it can fully form, before it can even be named.

The need to be held, to break down, to stop being the strong one, the caretaker, the one who holds everything together. The need to be the baby bird with the gaping mouth instead of the one doing the feeding.

But just as it is with desire, the need isn’t the problem. The shame that wraps around it is.

This is where group can be so powerful, where being witnessed and held by others can loosen the boa constrictor’s grip just enough to be able to breathe and experience the need without immediately believing it means being unlovable.

My group-mate needed to be held and the therapist and the group members held her with the recognition and the understanding that her need was neither pathetic nor reprehensible but simply human and something we all shared. That’s what I told her, that she was expressing something for all of us in that moment.

I also needed to imagine being held, cradled, letting myself break down, and the group met that with the same recognition.

Coming Home to Need

Need and desire have both have been married to shame for so long that separating them feels impossible. But every time I can notice the need without immediately feeding it to the shame, or let someone see me wanting to be held without believing that wanting makes me a burden, the marriage weakens just a little.

I don’t know if I’ll ever actually let myself be cradled in someone’s lap and break down completely. The vulnerability of that is still difficult to imagine, too exposing, and too close to the edge of something I’ve spent my whole life protecting myself from.

But I can notice the need. I can name it. I can let others see it. And I can hold it with love. For now, that’s enough.

What need have you been hiding from yourself?

Desire and shame get married early. Sometimes the marriage is arranged by parents who couldn’t tolerate your emotions. Sometimes it happens when your body teaches you that desire is dangerous. Either way, once they’re bound together, it’s hard to separate them.

This has come up multiple times in my practice this week. It’s one of those funny synchronicities of being a therapist where the same theme shows up in different forms across multiple people when it’s especially alive for you.

The Shame of Excitement

One client described a pattern that has existed since childhood where they get passionate about something new and the excitement builds until they buy expensive equipment, after which they almost immediately lose interest.

Each purchase becomes symbolic of their own failure, proof of their fleeting interest, self-indulgence, and their inability to follow through.

The shame doesn’t just attach to the abandoned hobby. It attaches like a virus to the desire itself.

We explored how this started, how their excitement and passion were responded to by their father as a child, how they learned to be cautious about spontaneous expressions of emotion because they were often judged and scrutinized. Over time, they developed a filter where any impulse, curiosity, or excitement reflexively met their own judgment before it could fully form.

This had been happening for so long that the shame felt easily accessible, but as we talked about the different ways it manifested in their childhood and present life, I felt a mounting sadness and loss in my chest. I told them I was feeling it and wondered if they were too.

They weren’t. It felt foreign to them that sadness could even be a possibility. That’s how successful the defensive coping mechanism had become, completely walling off the experience of the vulnerable child who just wanted to be excited about something without being punished for it.

I told them I can hold the sadness and the pain for them for now as we continue to provide more texture and understanding, and over time they can hold it with me, this understanding of the arranged marriage thrust upon them between desire and shame.

The Group

Another client recently started a weekly therapy group. They had their first meeting and felt surprised by the strength of their reaction.

All of these complicated feelings about belonging, being invisible, being known, being desired poured forth from the magma of their unconscious and left them questioning why on earth they were participating in this process.

Amidst the chaos lived a desire to belong, to be seen, to feel at ease in a family, to be loved and cherished and known.

But there was also shame about how they showed up, their inability to express themselves, the awkwardness and self-consciousness. All of these feelings made them feel angry and want to run away.

They wanted to understand why they were experiencing so much anger and aversion, and it was difficult in the moment to access the vulnerability and the pain and the longing underneath.

I was feeling it, but I was also aware of the need for the defense, so I was patient, allowing the anger and frustration to be there without shaming it, honoring the tenderness of the desire, witnessing how the scripts about who they were in the context of others were getting reinforced.

The vulnerability was aching for order, even if the order meant banishment of the longing and desire.

The Cudgel

Shame is a brutal cudgel, wielded by unconscious forces that seek to protect even if they leave everything dead in their wake, pulverizing desire and longing, propping up anger and resentment and self-righteous indignation.

I know this intimately as well. I wrote recently about how desire felt like an impossibility in my disabled body, even when the disability was imperceptible, like flirting with a world I could never inhabit. The impossibility wedded shame with desire from the very beginning, starting with the shame of desiring physicality with my mother because it caused her pain.

The cudgel of shame tried to keep me safe from being exposed, rejected, humiliated, from being the naked pigeon-chested boy with protruding scapulae encased in glass on the museum wall.

That’s what desire felt like to me, like the most dangerous and terrifying impulse that needed to be overcome and kept in check by shame.

The Hero’s Journey

We learn to feel shame about our desires in myriad ways. The stories of my clients and my own are just a few examples among countless others.

Coming home to the tenderness of the longing and desire that was banished by the shame is a hero’s journey, and unfortunately it’s one that many people never get to make.

But for those who do, the return is worth everything. Not because the shame disappears or the desire becomes uncomplicated, but because you finally get to feel what was banished and always there underneath; the longing to be excited about something without punishing yourself for it, to belong without feeling like you have to earn it, or to want someone without believing the wanting itself is proof of your impossibility.

It’s healing to realize that the longing was never the problem, rather the shame that got married to it was.

What desire have you learned to feel ashamed of?

8 years ago yesterday morning, my alarm went off at 7am. My wife turned off the white noise machine on my bedside table, removed the earplug from my left ear, knelt beside me so her eyes met mine, and told me my mother had died. She would have turned 77 on Valentine’s Day.

Valentine’s Day has always been more about my mom’s birthday than Valentine’s Day, especially the past eight years since she died.

From 2019 on, the 14th to the 20th of February has been a week of contemplation for me, connecting with my mom, listening to her saved voicemails. “Hi D, it’s me…” That’s how every message started.

Early February, 2018

We had moved to Austin from New York two and a half years before she died. We flew in to see her early February of 2018 because she was hospitalized. She was intubated so she couldn’t speak.

I remember sitting in my wheelchair next to her bed, figuring out how we could communicate. I asked her questions. She squeezed my hand once for yes, twice for no. A few tears escaped from the sides of her eyes. I gently dried them with a tissue. She was scared. I wasn’t ready to let her go.

She was only 68, about to turn 69. Too old to be tragic, too young to feel natural. There was nothing natural about how the MD ravaged her body.

For many years, it was hard for me to see her, to see my mother wasting away and to see my reflection and a version of my future.

She kept alive and living the best she could, with her work as a rare book dealer, her family and close friends, reading voraciously, watching shows, and enjoying her beautiful home with my dad that she helped design. It was such a beautiful home with a Japanese maple in the center of the front drive, surrounded by trees. A little pond where we brought our son’s goldfish when they grew too big: Goldie and Goldberg, the Gefilte Goldfish. They got big and thrived in that little pond. We loved visiting them.

The gardener loved my mom. He’d pick a bouquet of flowers from the garden when he was there and give them to her. She loved to sit outside in silence when it was warm enough, next to the coy pond that became coy-less when Goldie and Goldberg were eaten by a snake. The air was so clean and luscious. I can close my eyes and join her there. How I wish I could join her there.

The Third in Our Relationship

The muscular dystrophy was always a third in our relationship, an uninvited presence that shaped everything between us.

For years it precluded the possibility of real connection. We couldn’t talk about it directly. We couldn’t name what was happening to her body due in large part to what would happen to mine. We couldn’t talk about the guilt she carried for passing it to me, the shame I felt about having it, and the fear we both lived with about what was coming.

For her, I imagine the guilt that she passed the MD to me was excruciating. It was destroying her own body, and she knew that I would likely experience every limitation and loss of function that she experienced. She knew it could be even worse for me and that the decline could happen even sooner.

For me, the shame was all-consuming. I didn’t want to be a reminder of what she’d passed on. I didn’t want my presence to trigger her guilt. So I spent years avoiding her. I kept my distance so I didn’t have to see her body breaking down or let her see mine doing the same.

The MD created a chasm between us that neither of us knew how to cross. We loved each other so much, but the disease made our intimacy feel dangerous. Getting close felt too threatening to me. It was as if it would have infected me with something I knew I was already infected with, but I had to live like I wasn’t.

The Last 10 Years

Our relationship shifted significantly in the last decade of her life. It was a combination of having my own kids, maturing, both of us being in therapy, softening to each other and appreciating and enjoying each other more.

We started talking more honestly and openly, not as much about the MD directly, but about everything around it including the fear, loss, relationships, longing and the ongoing deprivation that our bodies and realities posed.

The guilt and shame didn’t disappear, but they stopped being the defining characteristics of our relationship. Being with her felt less like looking into a crystal ball and more and more just like being with my mom.

That healing in the last decade is what makes my grief bearable now. I know how much she loved me, and she knew how much I loved her. There’s no unfinished business that I’m grappling with, conversations I wish we’d had, or love left unexpressed. If I could sit down with her one last time, all I’d really want to do is hold her hand, look into her big blue eyes, and tell her just how much I miss her.

8 Years Later

My mom’s two lifelong best friends from early childhood are coming to visit next week for the first time since she died, and being with them is the closest thing to being with my mom. They knew her before I existed, before the MD was eclipsing so much, before any of the complications that would define so much of our relationship.

I don’t have the acute ache of grief anymore after eight years, that raw, consuming pain that defined the first months and years after she died.

I didn’t take any shortcuts grieving for her, didn’t numb it or rush it or try to make it more manageable than it was. I stopped drinking for five years after she died because I didn’t want to dilute the grief in any way, didn’t want anything standing between me and the full weight of losing her.

The grief has changed shape over time, become something I carry with me rather than something that overwhelms me, but it hasn’t disappeared and I don’t want it to. It’s the residue of love and how much we mattered to each other. Grief is love in the raw.

I still wish I could call her and talk about what we’re reading, watching, the kids. She would love hearing about my daughter’s obsession with animals, her sass, and hilariously shocking irreverence. She’d hold the exasperation and exhaustion with me as well. Or my son’s newest adventure, aspirations, his plans post-graduation, and how he has evolved regarding the MD, wading into love. She’d get so much pleasure hearing about them. She had space for that. I miss that space, and I really miss making her laugh. She was my best audience.

What She Was Spared

The last decade has been pretty brutal for me with the MD. I’m glad she’s been spared from witnessing that. It would be heartbreaking for her to see the ways it has ravaged my body.

We would have bonded over our shared spirits, our strength and determination and toughness. If anyone could understand how I fell, broke my nose, washed off the blood and went back to work, it was her. She was a tough bitch and I hold that close to my heart. Her strength is mine.

But if she were alive now, I can imagine there being more space than ever for softening, tenderness, tears, vulnerability, and loss.

Who knows though. Maybe her dying was the portal for me to get here and it would be a lot more complicated if she were still here.

The Voicemails

When I listen to her voicemails, it’s like she’s still here. Singing us happy anniversary with my dad, asking how my workshop went, telling me there’s a new prequel to Breaking Bad called Better Call Saul, asking me how I’m feeling after being sick, telling me she talked with my grandfather about Passover plans. Her voice getting weaker and raspier.

I picture her sitting at her desk, her hair perfectly straight and coiffed, calling my dad on the intercom, some inane reality TV show humming in the background (I always made fun of her for that), telling the dog to stop barking at the front door, and resting her tired neck back on the headrest of her chair.

There Is a Hole in the World

Shortly after my mother died, I went to see the play Miss You Like Hell at the Public Theater. Olivia sings a song about her mother who had died:

“She was always there.

No matter where I went.

There is a hole in the world in the shape of you.

You were a shadow to me. Now you’re crystal clear.

There is a hole in the world in the shape of us.

There is a shape to us.

Shadows become clear.

Until the missing became a part of me.

You are a part of me.

You are my history.

You are my recipe.

You are my family.

There are canyons where the river runs.

And leaves its scar.

And there you are.

Miss you like hell.”

Mom, there is a hole in the world in the shape of you. In the shape of us.

The missing has become a part of me. A canyon where the river runs. Your absence has laid bare the raw truth of your love for me.

You were a shadow to me for so many years. The guilt and shame was obscuring. I see the fierce love you had for me despite the impossible weight you carried. I see how you kept living and never let the disease define the entirety of who you were. I see you. I love you.

77 years. 8 years gone. I miss you like hell, mom.

I participate in a weekly mindfulness group for people living with chronic illness and chronic pain. This week, the leader announced we were going to do a movement practice.

In the past, whenever movement has been part of a meditation, I’ve felt a familiar constriction, a reflexive aversion. The immediate thought is that I can’t participate, accompanied by the anxiety that arises with the feeling of being “Other” and defective.

Usually, I sideline myself. I go through the motions without actually participating, protecting myself from the exposure of moving my broken body in front of people.

Keeping the Camera On

Today was different. When the leader introduced movement, I received it as an invitation instead of a threat. I consciously chose to keep my camera on so I could be seen.

I allowed myself to fully join and connect with the different parts of my body in the ways I am able.

Part of the practice was sending metta, lovingkindness, to different body parts. My right neck and shoulder were in pain, so I massaged them. I sent love to the pain.

I moved my body in the ways it can move and allowed myself to fully participate. It felt like giving myself a gift. A small one, maybe, but the implications felt enormous.

It feels like saying yes instead of no. It was also a clear example of shame not being the driver. I felt no shame as I participated. I felt no self-consciousness. And the more aware I was of feeling free and participating, the better I felt. It didn’t feel awkward or forced to send love to my body and touch my neck and shoulder with tenderness, care, and compassion.

Seattle

This brought me back to this past weekend in Seattle for my friend’s 50th birthday, the trip I spent weeks feeling anxious about.

My mind had regurgitated myriad ways of feeling excluded, watching people do things I can’t do, sitting alone while everyone else hiked or danced.

None of that happened, or rather, the limitations happened with things I couldn’t do, but the exclusion did not.

There was love, acceptance, and connection. There was physicality, hugging, holding, and asking people I barely knew for help. Instead of feeling like a burden, asking for help felt like a vehicle for connection.

I allowed myself to be there, even when I couldn’t do what other people were doing.

I am so glad I didn’t exclude myself from this experience. Not just because I got to celebrate someone I’ve known and loved so deeply for 35 years. But because I gave myself the opportunity to inhabit my body among others without hiding, some of whom I’ve known for decades, others who I was meeting for the first time.

I’m learning more and more that desire and desirability take many forms. Just because I’m not going to be physically desired in ways that I’d like to, and there’s certainly loss in that, doesn’t mean that desire and desirability are completely off the table. That was palpable throughout the weekend.

What Is Shifting

I feel like I am transitioning out of a space where shame is the organizing principle.

I am shedding layers of constriction and self-exclusion. I am choosing to participate, to belong, and to be grateful for the capacity I do have. I am choosing to say yes to invitations as opposed to scanning for reasons to say no.

This feels like a massive structural shift.

The weekend was a celebration of that. I told my friend how grateful I was that he asked for what he wanted by inviting his closest people. He got what he wanted, and I got what I needed. Others did too. That’s part of his gift. Even when he takes, he’s giving so much.

It feels sacred to experience gratitude as an organic arising rather than a discipline used to make myself feel better. Abundance eclipsed absence. My heart feels immeasurably full.

When was the last time you chose to participate instead of protecting yourself from being seen?

Danielle. Justine. Jessica. Lyris. Cristina. Amanda. Alissa. Aileen. Siobhan. Jess. Adira. Buffy. Julia. Alison. Betsy. Stacy. Judy.

These are the names I remember from age 8 to 20. Secret unrequited crushes. I know there are many more I cannot remember.

I used to develop crushes on girls who were unavailable. Most of them never knew.

The Safe Distance

There was one in high school who was dating one of my best friends. We were at a party. I was quite drunk, which was typical for me on weekends. My school was half an hour from my house, so most weekends I stayed at friends’ houses. The norm was that I drank until I threw up or passed out.

This particular party ended with the former, but not before I embarrassed myself in the kitchen in front of a bunch of people, telling Stacy that she was so beautiful and should be on the cover of Sports Illustrated.

My friend was there. He wasn’t upset in the least. That’s the kind of guy he was. But maybe it’s also reflective of the level of threat I actually posed. I mean that it was inconceivable that she would have liked me in that way and chosen me over him. He was handsome, able-bodied, fit. The way I gushed over her wasn’t romantic or sexual or in any way pursuing her.

Sometimes I’d become good friends with girls and secretly long for them. Some confided in me about their love lives, not knowing how I felt. A lot of them dated assholes who treated them like shit. I was safe and trustworthy and unthreatening, landing me squarely in the friend zone.

When Interest Was Reciprocated

There were some times when I liked someone and it was reciprocated. That scared the shit out of me.

There was a French girl named Julia at my summer camp. I liked her from afar. I don’t remember how she found out, but she was interested in getting to know me when she did find out. When I heard that, I lost interest.

This became a pattern. Amy at sleep-away camp started as a secret crush. We ended up hooking up. I found out she liked me too. I really liked her. But after hooking up that one time, I never reached out again even though I wanted to.

There were others too. Whenever I found out they were interested, that was the death sentence.

What I Was Protecting

I was longing for something to happen and simultaneously terrified that it would.

I was afraid of being exposed. What if it got physical and they could tell something was different about my body? The fear of being touched wasn’t about intimacy itself. It was more primitive than that. It was about being found out, like something about my body would betray my secret.

The fear wasn’t completely conscious but it wasn’t completely unconscious either. I wasn’t thinking about it explicitly like this. The decisions were made automatically. There was too much at risk.

I didn’t think about what would happen if I was exposed. I didn’t take it that far. It was unfathomable.

It still feels like my world would have completely changed if the wrong person found out at the wrong time. One person would have told the next and eventually everyone would have known and my identity would have been revealed and everyone would have looked at me differently and there would have truly been no hope of ever being seen as desirable.

It would have been a scarlet letter tattooed on my forehead for everyone to see. I would have been seen as weak, defective, undesirable, different. All the things I’m still navigating today.

But what I couldn’t admit then and still struggle to admit now is that the real terror wasn’t just exposure. It was that wanting someone, the desire in and of itself, felt like proof that I was defective.

Because how could someone like me want someone like them? The wanting revealed the distance between us. It made the gap between what I longed for and what felt possible undeniable. Every unrequited love confirmed what I already knew, that I was different and defective.

Unrequited love’s a bore

Freshman year of college, I moved dorms after my first semester and fell head over heels for Judy, who lived in the room across from me. We started spending a lot of time together.

She had a long-term boyfriend in her hometown.

It was the perfect torture for me. I needed her to be unavailable so it was safe and I could pine away. I longed for a girlfriend, someone who wanted me the way I wanted them. I wanted to be like my friends who had relationships, to fit in, belong, be desired, and to have experiences.

I wanted all of this, but not actually. Not if it meant being exposed.

Honorary Member of Homo Island

I was in a training group for therapists in New York City for ten years. One of the guys in the group was gay.

After hearing my story one day, he told me I was an honorary member of homo island.

All of the hiding, shame, fear of being found out and what the consequences would be, the indelible scars that result from years of that level of hiding, the perks of fitting in on the surface, passing as non-disabled, the loneliness and vigilance. All of it gave me a VIP pass to homo island.

The recognition made me feel joined and understood, like I was part of a bigger community in a way I had never felt before with respect to the MD. The parallel made sense to me. There were people who knew what it was like to hide, to compartmentalize, to protect against shame and the cost that came with it.

What Changed

It wasn’t until my senior year of college, when I started sharing with my closest friends about the muscular dystrophy, that I was able to ask someone out and follow through with it.

We ended up in a three-year relationship.

I don’t remember when I told her about the MD, but I did, and she stayed and wasn’t phased by it. And for the first time in my life, the wanting didn’t feel like a betrayal of my own impossibility.

The expanded container of awareness helped me feel stronger, not because the shame disappeared, but because it could finally exist in relationship to something other than silence.

What I See Now

I look at that list of names now and I see a younger version of myself longing for something he didn’t think he could have while simultaneously protecting against it because of what was at stake.

The unrequited loves were safe. The reciprocated interest was terrifying.

I was never exposed in the way I feared. My body never betrayed my secret through touch. But the fear shaped everything anyway. It shaped who I pursued, who I ran from, how I saw myself and what I thought was possible.

I’m not that person anymore. My body is exposed now in ways I couldn’t have imagined then. The secret is out and has been for years. I don’t have any choice in the matter.

But that young person who longed and hid and protected and ran is still alive somewhere inside me learning that being seen doesn’t have to mean being exposed and eviscerated. Still learning that desire doesn’t make you defective and that wanting is not the same as delusion.