Special Torture (or how to grin and bear it)

Neurotypical Failure

July 15, 2025 | ADHD, ASC, autism, DysAuDHD, dyscalculia, dyslexia, education, health, life, mental health, neurodivergence, pain, school, selfcare, Uncategorized | Permalink

The Moon from Mystical Moments Tarot by Catrin Welz-Stein

For most of my life, I’ve felt like a failure. A rather fair-to-middling one, I grant you—I did have loads of privilege and a cussed determination to fall back on—but a failure nonetheless. 

Let’s get right to it. I started struggling—and failing—young. My entire academic life was a masterclass in toil and mediocrity. I have actual memories from nursery school, anxiously waiting for nap time, because that was when I got a pause from the already difficult work of being educated. I remember feeling aggrieved even when learning to write my birth name, Melissa. Seven letters! And two of them were S’s, a letter I was repeatedly scolded for consistently writing backward. That I remember this astonishes me. How many other people remember the confused shame of learning to write their own name? Like I said, I got a head start in having a hard time. And this, friends, sets a tone. 

Kindergarten was rough. I got my first pair of prescription glasses and my first migraine that year. I lived in terror of being called on to tell the time on the big analog wall clock or, god forbid, tie my shoes in front of the teacher and class. Again, I have distinct, anxiety-fueled recollections of feeling behind the class and, increasingly, the sense that I was different, less capable than my peers.

I floundered in elementary school. I tested into remedial classes and never outgrew the labels of “weak” and “reluctant” reader. I was as awkward as the day was long. Those glasses were already equipped with Coke-bottle lenses, and the taunt “four-eyes” felt like a familiar curse. I did summer school for the first time in grade school to try to improve my reading. I don’t recall any of my friends requiring these interventions, though I can acknowledge that there may be a bit of selective memory at play here. But what I can remember is frustration, embarrassment, and growing self-doubt.

Middle school happened, along with tutoring and more summer school for my now clearly abysmal math skills. That said, my general intelligence managed to shine through a bit here. I even made the honor roll on a few occasions! It was during these years, however, that I began to solidify the disconnect between how smart I believed myself to be and the grades I was able to consistently achieve.

This was also the age when gym class turned into the stuff anxiety dreams are made of. I began underperforming in my academic classes, while simultaneously, PE became a reliable source of mortification and dread. I was awkward and uncoordinated—I could not hit, kick, or catch to save my life. My body would not respond to my pleas to perform properly any more than my brain would. My classmates could sense this ineptitude and tried to save themselves by dissociation, picking me dead last for every team activity. Good times. 

Now, I was savvy enough to hoodwink my teachers in middle school, but high school was different. I was reaching the limits of my act. I stopped all clubs and activities: no more chorus, theater, or art classes. I don’t think it was a conscious decision, but flying under the radar became my modus operandi. 

I scraped by with slightly below-average grades and the annoyingly constant reminders that I wasn’t fulfilling my potential. During these last few years of formal education, my inner experience shifted away from the idea that I was a smart kid who just needed to work harder. By senior year, I had diligently authored the internalized story that I was someone who could only fake being smart and, as such, would not amount to much. Or more—if I put myself out there, I would be found out, so best to avoid involvement or participation. I graduated with little to show beyond rotten SAT scores, the diploma, and a wicked inferiority complex. 

I managed to get into the only college I applied to, and thus began the final stretch of my academic flounder—and the one that truly snuffed out my spirit. I couldn’t fake it at the college level, and while that was painfully clear to me, the precise reasons remained obscured. Over the years, my personal narrative maintained that I was simply too anxious to attend college, but something always sat beneath that assumption. Something more profound and more confusing. Whatever the reason, in 1993, after only one year, I dropped out of college and never earned a degree of any kind. 

My professional life was equally unimpressive and determinedly wishy-washy. I held a short series of jobs that I stumbled into more or less. In the thirty years since I graduated from high school, I’ve had only four job interviews. And those four jobs have not resulted in anything notably rewarding. No promotions. No real engagement. No drive. Just life lived paycheck to paycheck. Beyond that, there was also the high stress of managing personalities at work. Bosses, coworkers, and customers alike could all send me into tailspins of escalation. I made friends and worked well with others, sure, but it was hard to keep calm and confident when I was so unsure of myself and my abilities.

The final and longest chapter in this lackluster tale was a position with zero mobility at a tiny internet company. I held on to it for twenty-three years. People often told me that staying in that position for so long showed loyalty and stick-to-itiveness, but I knew better. It really reflected my complete and utter dread of change and lack of faith in myself: the idea of changing careers was petrifying in the extreme. 

Overall, the prevailing feeling I had in my professional life was one of limitation and fear. I intentionally held myself back in almost every way possible and had, for the most part, given up on the idea of a “meaningful” or “successful” career. I could not even imagine a lucrative one. I’ve joked more times than I can count that my retirement plan is the apocalypse. If only.

I haven’t moved as much as my peers. I’ve only had seven addresses in my fifty years. I was a renter. Never a homeowner. Well, I am now, but not in the usual way. I stumbled into that too. See above, fear of change. 

I spent the majority of my life without a driver’s license. I used to brush off questions about my lack of license with terse, flippant replies about city livin’ and how I only needed public transit, a bicycle, and my own two feet. While that’s largely true for city dwellers, it wasn’t the whole story. I avoided getting a driver’s license for so long because the prospect of driving—with all the financial, practical, and safety unknowns and implications—felt completely beyond what I could imagine handling. In short, I refused because I believed I was incapable of being a driver or owning a car. The whole idea just seemed absurd beyond all measure. While I now have a better sense of these self-imposed constraints, for most of my adult life, I explained my lack of a license with the increasingly common refrain of “too much anxiety.”

I finally got my license at the tender age of 45, after moving out of the city and into the suburbs—because, at that point, I had no choice. Necessity may be the mother of invention, but it can also breed bravery. It’s tempting to be self-deprecating about the delay—most people check off this rite of passage at sixteen—but no. I did it, and I’m proud. It’s one of the few moments in my five decades that feels like a true and glorious success.

I’ve never been married. I’ve only had one romantic relationship that lasted more than six months—and it was the only one that became a live-in partnership. That lasted several years. I (intentionally) got pregnant and birthed a magnificent child, but the relationship didn’t survive the transition into full-on adulthood and parenthood. We separated over eight years ago, when the kiddo was three. Since that breakup, I’ve been on three “dates.” Thinking back, I wince at how dysregulated and shut down I became afterward each. Dating is the most terrifying thing I can imagine. A full-blown intimate relationship feels as impossible as flying to the moon.

I know that on its own, any one of these situations—even several at once—doesn’t inherently make someone a failure. There are numerous reasons a person might choose to live a life that resembles mine. The trouble was, the reality of choice was only superficially part of my experience. On a deeper level, I was paralyzed. I felt barred from these adult rites of passage and benchmarks by forces I couldn’t name—inclinations, fears, and pressures shrouded in a deep lack of awareness and, ultimately, vocabulary. But they were there all the same.

The Moon from 5 Cent Tarot by Madame Clara

I can’t tell you how many times I gave up—or never even started—efforts to change my circumstances because I fundamentally believed I just wasn’t capable. Or, more vaguely, because I told myself the pursuit was simply “not for me.” I’ve spent the vast majority of my life convinced that I was incapable of being a functional adult.

Beyond this bizarre, self-limiting belief, there was also genuine, honest-to-god anxiety around newness, change, and anything I didn’t understand or found unfamiliar. I was often stupefied with fear over simple tasks (buying a phone card) or chores (going through a car wash). Even games I had never played before. If I intuited they would be too hard (Scrabble) or confusing (Wingspan), I would avoid them like the plague. These parenthetical examples are just the tip of the iceberg. The list of off-limit activities seems endless. 

Even now, it often feels like there’s no way out of these mental traps. In these moments, my thinking is so rigidly black and white that there’s no recovering from a decision or assumption once it’s been made. “Self-limiting” feels too gentle a term to describe the experience. “Self-negation” feels more accurate.

So, let’s recap the first three decades of my adulthood. School was a mess of the stressful and confounding, and I could not face the idea of higher education. A normal workday was both over and underwhelming in equal proportions. The mental and social challenges, whether in front of a computer screen, over the phone, or at the water cooler, seemed unrelenting. I managed to get by due to sheer force of will and an unyielding reliance on the familiar. Dating was—and still is—a horrifying nonstarter. I can’t even talk about most of these topics without getting freaked out to the point of mental and emotional shutdown. 

It’s as if I’ve experienced some kind of post-adolescent failure to thrive. All the while, I have entertained a dazzling array of mental health challenges: Depression. Anxiety. Suicidal ideation. Self-harm. I’ve even enjoyed a troubling laundry list of subclinical psychotic traits: intrusive thoughts, paranoia, derealization, auditory hallucinations, and more. 

I self-medicated: I smoked, I drank, I did drugs. I dissociated through vast swaths of my experience, both as a child and a young adult. I have very few memories from the first half of my life, and the ones I do have don’t paint a happy picture. I am still prone to hardcore dissociation and work daily to stay vigilant lest I get swept away in any number of maladaptive coping strategies. I know dissociation is a natural part of life with a human brain, and in traumatic situations, it can be helpful and adaptive. I get that, but try telling it to the friends I’ve disconnected from, or to the child who depends on me to create memories with her, and, most importantly, to be present with her.

My early adulthood felt pretty dire. I discovered alcohol, and the self-medicating began. In my early twenties, I managed to find a solid and helpful therapist, and my life “in session” began. I was first prescribed SSRIs and SNRIs in the ’90s.

Thank heavens, life started looking up in my mid-30s. All that therapy and those psychiatric meds seemed to be paying off. I was also just getting better at being human. One learns coping skills. One matures. As the years wore on, I gradually lost sight of how difficult my earlier life had been and came to believe that much of my suffering had stemmed from an unfortunate chemical imbalance in my brain. Meds and therapy were helping, so that must have been the case, right?

And things really were improving. I shed the enormous weight of depression and anxiety in my late 30s and entered my 40s happier and healthier than I ever thought possible—and with a baby girl to boot. But even so, I couldn’t shake the lingering self-denial and rigidity that kept me from making bold, positive changes in my life. I couldn’t figure out what the hell was wrong with me, or why I was like this. The truth is, I’ve felt othered and stigmatized by myself for as long as I can remember.

The term neurodiversity was coined by sociologist Judy Singer in 1998. I’m not sure I encountered it until the mid-aughts—maybe around 2010—but it’s hard to say. In any case, the variant term, neurodivergent, was, and still is, especially appealing to me.  I had always had a fondness for things left of center and a tad strange. And while neurodiversity speaks to inclusion and the positive normalization of difference, neurodivergent rings out with weirdness, otherness, and edge, and not in a negative way, but in a deeply appealing one.

You see, the chief feeling that arose as my awareness of neurodiverse communities expanded was jealousy. I felt left out. I had no explanation for my persistent dis-ease with life or my complete lack of measurable adulting success. I looked at these communities—primarily folks with autism and ADHD—and thought, These people have an explanation. These people make sense. I didn’t make the same sense to myself. I was too normal, too typical. I wasn’t special, brilliant, or bright, nor did I embody any of the qualities I saw shining out from neurodivergent minds around me or in the media. I was a neurotypical failure.

Of course, as you read this, you probably see where things are headed. If you know me, you know exactly what I am leading up to. Let me lay it all out.

Intuition from the Woodland Wardens Oracle by Jessica Roux

Since my daughter’s birth in 2013, I have come to understand that I have always been challenged by sensory processing issues. Primarily tactile—from my childhood horror of tags in my clothing to my anxious adult distaste to walking barefoot, and god help me, the electroshock skin-crawling torture of the shower curtain touching my skin while showering…shudder—but also olfactory (ugh, perfumes), oral (textures!), auditory (noises I can feel), and even visual (did you know there is a correct kind of clutter?). My senses assault me more than they please me, and I rarely find neutrality in my sensory experiences.

When I was 45, I read about complex post-traumatic stress for the first time. What a bombshell. While many practitioners can’t or won’t officially offer a C-PTSD diagnosis (it’s not in the DSM… yet), I have self-diagnosed as such and have been officially given “unspecified trauma-related disorder” and a PTSD diagnosis.

Around the same time, I was also officially diagnosed with fibromyalgia and IBS. Those, along with my lifelong migraines, are three hallmarks of what is now being recognized as Central Sensitivity Syndrome (CSS).

At age 49, my worldview and sense of self essentially exploded when I was diagnosed with ADHD and the big two “dys-orders”: dyslexia and dyscalculia. Although I haven’t been formally assessed, I believe I am also dysgraphic and dyspraxic.

At age 50, I finally found words to describe something that had been haunting me most of my adult life–I am aphantasic. THAT explains some odd shit, including why language around one’s “mind’s eye” and any type of visualization practice was completely and frustratingly confounding. I also have to wonder if there are ways that this type of difference impacts my other flavors of neurodivergence, especially dyslexia. 

So, there I was, halfway to 51, and on a mission to read everything my dyslexic perimenopausal brain (yes, that too, and don’t even get me started on how I think perimenopause should be considered an acquired neurodivergence!) could manage about my diagnoses. This led me to tangentially absorb a LOT of information on autism… especially how it can be unconsciously camouflaged in those assigned female at birth and raised as such. ESPECIALLY middle-aged ones. Hoo-nelly. “Bombshell” does not cut it. How about “sea change”? In May of this year, I received my ASC evaluation results: I am autistic. Also, note that I will be using the newer term “Autism Spectrum Condition” from here on out.

The deeper I look, the more divergence I seem to find. It feels bananas to me that I didn’t receive some of these diagnoses sooner, or that I did not know these things about myself sooner, but how could I have?

I could not have known I was dyslexic because I truly did not understand how dyslexia impacts people. It’s at least a thousand times more nuanced than the wholly incomplete and unhelpful portrayal of people described as borderline illiterate, who are said to struggle with reading because their letters appear swiggly and jump around on the page.

I did not think I had ADHD because the only version of that disability that made it into my worldview was the deeply reductive story of the hyperactive boy child, with no impulse control, who can’t stay seated in school.

This all feels doubly, triply, quadruply true of autism. I had absolutely no idea what Autism Spectrum Condition looked like for the majority of the people on the spectrum because I was only aware of how it manifested in children who were diagnosed (largely because they were struggling in schools and under the weight of societal and medical structures that were not made to accommodate them) or from the adult men I knew who had been diagnosed with Asperger’s. 

Just because you don’t know you are a thing doesn’t mean you aren’t that thing. Turns out, my brain is fucking WEIRD.  I am a deeply neurodivergent human and a goddamn baller at masking and at making systems work. I was not failing; I was diverging. This changes everything. 

People have different feelings about labels and diagnoses, and I get it. More than anything, though, I believe in my bones that information is power. This particular power comes with the ability to create change and, potentially, to heal.

I have a lot to share about these revelations, how they came to be, and the feelings they evoke. That will all come in a series of essays, I hope to share over the next year or so.

I feel practically compelled to share this information. I can’t shut up about it. I am info-dumping about me. I am my own intense interest! But, friends, all self-referential autistic humor aside, it’s also deeply healing and validating for me to share in this manner. Past therapists would say that this need to share, while intellectualizing and categorizing, is a ploy for connection and safety in creating systems. My astrologer friend would say it all stems from my natal chart and all my Geminian airiness. It’s probably a bit of all of that. 

But the compulsion to share is simple and straightforward, too. I have struggled for so long, and the underlying causes have been obscured the entire time. I’ve been mismeasured, mislabeled, and have been missing the table of contents of my own story. I want to illuminate everything so I can finally put down the burden of shame and confusion, take a deep breath, and say to myself and the world: There you go. You see? It finally makes sense. I finally make sense.

Thank you for reading this far and being a kind witness to my disclosures. 

Thank you for coming on this journey of self-discovery—and, I hope, the eventual joyous release from the hardship caused by a lifetime of ignorance, delusion, and masking. It is also my sincerest hope that as I catalog the mysteries I’ve solved—enumerating symptoms and sharing the details I’ve gleaned along the way—you might experience one or more light bulbs flicker on and gleam in the darkness… for yourself, a partner, a sibling, or best of all, your child. If I can help even one person illuminate their history, celebrate their glorious brain, and embrace their neurodiversity, I will be so glad. If reading this brings you or a loved one a step closer to diagnosis or much-needed awareness, I will be immensely gratified.

So come along, let me speak to you of ASC, SPD, CPTSD, ADHD, all the troubles (and joys) that begin with “DYS” and on and on. I hope you will learn something.  I never intend to stop learning or helping myself, so I hope that effort might help you, too. 

Much love, my friends.

Be like Becky.

June 29, 2025 | life, mental health, mindfulness, selfcare, Uncategorized | Permalink

I admire this human endlessly. I marvel at her regularly. She was a rare and brilliant gem.

Today is Becky’s birthday, and boy, do I miss her. I miss her warmth, her charm, her talent, her goofiness… I even miss the feeling of being so much less—less charming, less impressive, less popular, all of it—than she was because it happened to come with a compensating sense of joy, simply by virtue of the fact that she called me a friend.

In the years following her death, I began to understand how losing her warm and happy friendship, her faith in me, and her gentle encouragement impacted my self-esteem. All the ways I lacked and floundered became more pronounced when held up beside her memory and wholesome comparison. I am sure I am not the only person to feel that way. The world lost her kind and complimentary light. 

At some point, I began, both publicly and privately, employing the mantra Be like Becky.  For the better part of the 20 years since her death, I considered this wishful thinking. It defied my sense of self to imagine embodying the unflagging optimism and joyful determination I saw in my friend. And let’s face it, there would be no fine art and portraiture in my future. But still, I tried to imagine a version of myself that Becky would be proud of—a version that brought self-compassion and bravery to bear as often as she lent me votes of her confidence. 

And you know what? It kinda worked. 

Please don’t get me wrong, it’s not in my nature or even my wheelhouse to be as vivaciously bubbly, wildly talented, or as effortlessly cool and amicable as Becky Westcott, but little by little, I have grown my confidence, my positivity, and my bravery. 

I succeed in meeting each day with a kind of calm clarity and much better humor. I feel a genuine positivity and gratitude about myself and my life. My community has grown in its scope, largely because of my determined efforts at making, deepening, and maintaining friendships. I am managing responsibilities and taking on challenges I never dreamed I’d be capable of. And while my version of “being like Becky” can only look as Becky-like as my more cloudy temperament will allow, I can’t and won’t deny that I finally feel like the person she always insisted I could be.

Though to be fair, I’ll still never be as cool. 

I can’t even express how profoundly happy and gratified this realization makes me. I am so proud of myself. Gonna use all my energy and intention to keep proving her right. 

Thank you, Becky. Happy birthday. 

Upon 51

June 10, 2025 | life, mental health, mindfulness, selfcare | Permalink

Kiddo and I had an archery lesson. I managed a few bullseyes. The rest were hers.

Today is my 51st birthday. If I ever have moments of doubt about how well loved I am, all I need to do is remember how, each year on June 10th, the tiny computer in my pocket practically explodes with messages—texts, emails, calls, and DMs from every social app I use. It’s such a treat! But more than that, it’s a true gift, a kind of medicine you all offer me. It gives me a deep, healing sense of gratitude and relief: that I am loved, that I can love. There were times in my life when those truths weren’t as clear as they are today.

My 50th year was split in two by the death of my mother. When I think about those rugged first six months and compare them to the relative ease of the past six, the contrast is so stark it’s hard to comprehend. Those heavy hospice months feel hazy as a dream lost upon waking. Maybe that’s a blessing. What has remained clear, however, is the unwavering support I received from my community. Not once in the past 365 days did I feel alone or abandoned. I knew, in every moment, that comfort, help, and connection were always just a tap away on my phone.

As I begin my 51st year, I’m gonna keep working to earn that love and support. We all deserve it, but it also takes time, care, and attention to cultivate. That’s clear to me. May each of you receive the love and aid you deserve, and, most importantly, may you find the grace to welcome it in.

On Losing a Mother

June 5, 2025 | Alzheimer's, caregiving, dementia, life, mental health, mindfulness, pain, parenting, selfcare | Permalink

Writings from April to June, 2025

[Nine of Swords from Tarot of Mystical Moments by Catrin Welz-Stein]

My mom died six months ago, right before Christmas of 2024. 

And I have a confession. 

But first, allow me to state a few things before I share my admission. I want and need to, so you have a sense of how things came to pass and what it was like.

What it was like, sadly, was a long, lingering end brought on by dementia—a fate, if I may be melodramatically idiomatic, I would not wish on my worst enemy. And before that was a steady, six-year decline that decimated every aspect of her cognition as well as her physical and her mental health. It was also a state of affairs that ground our lives into a surreal, pandemic-fueled, twilight zone of isolation, lost memory, and fading abilities. 

To say that my mother’s dementia, decline, and death also impacted every aspect of my mind, health, and happiness would be fair. 

There seems to be some confusion, even among her providers, about what type of dementia my mother suffered from. Alzheimer’s? Vascular? Lewy body? All these diagnoses were bandied about in the last years of her life. The distinction, or at least the diagnostic codes in her chart, did ultimately impact the care timeline and her access to hospice, but generally speaking, as far as I was concerned, not much else. Dementia is dementia is dementia, and it’s all fucking awful. 

***

In the spring of 2018, we did not have one of those labels, but it was still clear, beyond any shadow of a doubt, that what was happening to my mother went well beyond “normal age-related cognitive decline.”

My stars were aligning… I was laid off from my job of 23 years, had split with my ex, and the kid was bound for kindergarten. I moved back to my childhood home, took over the management of the household, and became my mother’s primary caregiver. I remained so until the end. 6 long years. 

Let me be clear: caregiving for a person with dementia is different from caring for someone with other disabilities or even another kind of terminal illness. The death of someone’s mind is something no one is prepared to witness, and we are all depressingly ill-equipped to cope with. 

In Travelers to Unimaginable Lands, Dasha Kiper writes about how our innate cognitive bias makes us incapable of fully believing and adjusting to a loved one’s cognitive decline. She explores the caregiver’s brain’s staunch refusal to accept certain fundamental truths about the situation and their loved one’s own brain and personality as it is destroyed by dementia. This inability can cause bewildering suffering for the caregiver.

On the surface, we understand what is happening and how our loved one is changing, or at least we claim to, but underneath is a current of denial and refusal that cannot, for all our efforts, be consciously dismissed. We know things about what is happening, but that knowledge does not help us feel differently and thus does not help us act in ways that would be most helpful and healing for ourselves or our loved ones.

If you have any inclination to care for a partner or an aging parent with dementia, I recommend that you read Kiper’s book before you do. I wish I had read it before I took on the role. Not that I could have changed the way my human brain was wired to think and understand what was happening to my mother, but perhaps I could have met myself with more grace and kindness as I began to experience how the impossible nature of the situation was impacting me. 

***

Six years. Things could have gone so many ways. There was always the possibility that she would die suddenly—a heart attack, stroke, COVID, a fall down the stairs, anvil out of the sky… Anything. But in the end, it was the heart-wrenching slog through hospice: four months of around-the-clock care, aides, nurses, volunteers, chaplains, social workers, diapers, chucks, bed baths, spoon-feedings, and on and on.  

When hospice began, I noticed the unsolicited advice from people in my family and community shifted from kind, encouraging calls to mind my self-care to stark warnings about preparing for the inevitable. Statements vaguely suggesting or pointedly insisting that one’s world is inexorably altered with the death of a parent, especially one’s mother. 

I was informed on more than one occasion that a person’s life is divided into two parts: before their mother dies and after. I was warned that grief would consume me in ways that I couldn’t prepare myself for. I was told that there was a part of me that would never be the same. The dire prognostications came thick and fast. 

Part of me imagined this could all be true. I was, of course, familiar with the similar unintentionally unheeded warnings around pregnancy, birth, and parenting a newborn. Warnings that, though my ears heard the words, my heart and mind remained somehow oblivious to. There are things in life that cannot be accepted without the perspective of experience; realities that must be experienced to fully grasp. I get it.

Like the deprivations of the fourth trimester or that biased denial baked into dealing with dementia, I can acknowledge that grief must be lived to be believed. 

***

My mother’s final months in hospice were, unsurprisingly, the most difficult stretch of caregiving yet, and arguably the four hardest months of my life. Not because I was emotionally preparing for my mother’s death, but because tending to the bodily necessities of someone who is slowly wasting away—as well as my own emotional needs is, frankly, enough. There was absolutely no room for planned or spontaneous grief—anticipatory or otherwise. At least not for me. Even if my responsibilities had been fewer, my needs met, and if I had increased bandwidth to manage more feelings, I don’t believe things would have been much different. 

When she finally passed, a new chorus of kind, well-meaning voices reiterated many stories about what mourning a mother looks like. Some reasserted the non-linear process of grieving. Others warned me of unexpected transformation and profound longing. I braced for it—but it never came. 

This is the first time I have publicly admitted to something that has been troubling me. Here is my confession: I am not grieving my mother’s death. 

If I were worried about the impact that statement might have on your opinion of me, I might quickly add that seeing the end of her suffering was enough to mitigate my grief. Or I might try to explain that the end of hospice and the grueling work of caring for her brought such a complete sense of relief that there was no room to feel anything else. These things were indeed true. I did experience waves of intense relief for both her and me after she left us. 

I might expound eloquently on all that and avoid sharing the deeper truth that hurts my heart more than most. Here, I’ll say it again so we are clear: 

I am not mourning my mother’s death. But I am feeling something…

A hot flush of shame when I remember that my mother is gone, and I am not grieving the way the world expects. 

A wicked envy that swallows up my heart when I hear people speak of the great sadness they experienced when their mothers passed. 

A brokenness that has been part of me for as long as I can remember. 

***

Folks have many incorrect assumptions about what my grief looks like, how wild and vast it must be, or that I have been forever changed by the loss of my mother. I don’t always correct that last assumption because it is true. I was forever changed by the loss of my mother. But here is the god’s honest truth: I lost my mother when I was a child. 

Due to what I can only assume was a staggering confluence of inherited and generational trauma, birth order, nature and nurture, unexamined and masked neurodivergence, and just plain shitty circumstances, I never formed an attachment to my mother.

In fact, I resolutely rejected any attachment to her. 

When my young mind was forming and learning, I intuited that my mother (and my father, but that’s a different essay) was not safe to rely on or allow myself to love. At some point, before I had memories, before words even, I determined that I would rather hide from her and any affection she might offer to keep myself safe. 

This was not because of any overtly cruel or violent behavior from her (never mind the spanking). She was not a mean or malicious person–not by a long shot. My mother was well-loved by many, many people in our extended family and community. People thought she was wonderful. 

Confoundingly, those who knew and cared about her have made some of the most erroneous assumptions about what she left behind and how I am grieving. 

I think my deeply avoidant/disorganized attachment is related to the sad reality of what she was incapable of offering—because she was, like me, so fundamentally wounded by her own traumatic upbringing—with the loss of her own mother at the age of four and the subsequent abandonment by her father. Rugged stuff. 

Moreover, in the time immediately before my birth, she was grieving the loss of her first son, a newborn who never came home from the hospital. By the time I arrived, I imagine her firmly overwrought by her own grief and caring for her two existing children while rigidly tending to the needs of an emotionally abusive husband. It’s no wonder she couldn’t meet my needs. I felt rejected by her, and my young mind and nervous system, in turn and quite automatically, rejected her. 

Smart strategy, right?  If I did not leave myself open to further pain or emotional abandonment, then how could I be hurt or rejected again?  

***

I know I am not the only person in the world with attachment trauma, but I have spent so much time thinking of myself and the lack of maternal love in my heart as aberrant. So, I worry you might read these words and judge me, or worse, not believe me. 

I imagine you could consider what I’ve said, and the very nature of the love that you shared with your mother might preclude your understanding of how real and injurious this early loss was, and how it derailed the course of my life.

Please don’t think I am being hyperbolic. I have lived with grief. I have experienced chronic pain since I was five years old. I have struggled with depression, anxiety, low self-esteem, and toxic shame since I was an adolescent. I cut and burned myself. I fantasized endlessly about how to end my life. I’ve bottled up so much fear and self-loathing that it flavors everything I do, feel, and say. I’ve self-medicated with food, drugs, and alcohol for almost my entire adult life. And even after decades of therapy and hard fucking work, I still entered my 40s playing host to one of the most damning self-critics I can imagine. Some of you might know exactly what I am talking about. Some of you may find this all too hard to believe. 

Let me assure you, this kind of wounding and its impact are quite real. In her book Mother Hunger, Kelly McDaniel outlines the life-altering damage this type of attachment injury can impart. McDaniel argues there is literally no part of a daughter that is not warped and stunted by this “hunger” for the nurturance, protection, and guidance assured in a secure attachment with one’s mother. Furthermore, it’s generally acknowledged that chronic pain syndromes like migraine and fibromyalgia, as well as gastrointestinal conditions like IBS–all of which I have been diagnosed with—are linked to childhood trauma. How very textbook of me. 

In all these senses, perhaps it’s true that my life can be bisected into two—before I lost my mother and after. I just happened to have stumbled around the vast majority of my years after a slow-moving, hidden calamity. 

***

The term “ambiguous loss” was coined by Dr. Pauline Boss to describe a type of loss that occurs without clear understanding or a likelihood of emotional closure, like attachment injury caused by rejection between mother and child, or, likewise, the slow decline of a person with dementia. 

I’ve lost my mother twice. I have no explicit memories of my childhood loss, only implicit memory buried in my body, expressed as fear and pain. And even as dementia stole her away, I don’t have a clear understanding of when she was finally taken. At the moment of her physical death? When she became nonverbal? When she stopped recognizing us? Who can say? 

***

Mother’s Day has come and gone. 

Many kind souls reached out that day to extend love and care, specifically citing my mother‘s passing and assuming I must be feeling a certain way. When the first message arrived, I was disconcerted by the shame that surfaced. It hadn’t even occurred to me that I should feel a certain way just because it was Mother’s Day and my mother was gone. It hadn’t even crossed my mind. Her February birthday didn’t register either. 

***

Platitudes like “Grief only exists where love lived first” make me wanna growl with displeasure.

Really? Is that always true? The jealousy I feel when a person emotes about the love they share with their mother (or father) eats away at me in a deeply toxic manner. It also doesn’t hold up to much reasonable scrutiny. When I consider the enormity of what they must feel when their beloved parents dies, my envy is replaced with relief—relief that I will never have to face such pain. But then the jealousy returns. 

How do I mourn something I never had? When I allow myself to soften around this, I realize that grief, no matter how or when you lose your mother, is just filling a hole where love should be. It doesn’t matter whether the love was ever there to begin with. I’m sure that feeling active, engaged love being stripped away when your mother dies is unbearably painful. Beyond words. Of course it is. But so is the pain of feeling nothing stripped away when she dies. It’s awful and it’s unjust. And what, if not the pain of grief, have I been experiencing all these years? 

***

I recently read about the concept of disenfranchised grief—a form of mourning that, due to societal or familial pressure, cannot be openly shared or expressed. There’s no validation, no public ritual, no collective mourning. This kind of hidden grief can lead to profound isolation, difficulty processing emotions, and trouble finding closure. 

Ambiguous loss. Disenfranchised grief. 

I’d give my eye teeth for something straightforward and clean, something that made sense, so I could feel in the ways others, and our culture, seem to expect me to. The way I wish I could. 

Sometimes, I imagine there’s a fixed allotment of pain that everyone is destined to feel over the loss of their mother. For some, it’s a hurricane of sorrow after losing a beloved parent. For others, it’s the slow, steady drip of shame and despair from a life devoid of their love—or love for them.

Neither is easier. Neither is harder. Both are awful. The shape of the grief may differ, but not its impact, and either way, you spend the rest of your days trying to rebuild what was ripped away with their loss.

***

My mother did her best. She loved me in her own way. I know that.

I owe her a debt of gratitude: for my life, the roof over my head, my intense and fruitful love of nature, my excellent cooking skills, and more. Most importantly, she served as a model of what it means to be a decent, conscientious human being. I must also acknowledge that the suffering of my childhood passed through our generations, linked by a heavy chain forged by the trauma she endured in hers. We both suffered, and arguably, she had a demonstrably harder time than I.

But none of this changes the way my heart aches, nor does it soothe the burn of a lifetime of sadness and pain. She was lost to me. And in losing her, I lost the person I was meant to be. It wasn’t entirely her fault, nor was she blameless. I will spend the rest of my days trying to find my way back to myself—and to prove to myself that I am safe, that I am loved, and that I am not alone.

I’m grateful for the work I did—and for the struggle of caring for her as she slowly transitioned from this world—because it illuminated so much of what was broken in me and in our relationship. Once I truly see something, once I get my teeth in it, I work to accept and heal it to the fullest extent possible. It’s what I do. And without the recognition and processing of this lifelong grief, I wouldn’t have any real chance at healing.

I began writing this hoping that it might make me feel better. That if I were transparent about the disconnect I felt at the time of my mother’s death and if I acknowledged the quiet, relentless grief that has been with me for so long, something might shift. Perhaps I can take some of this disenfranchised grief and sanitize it with sunlight.

If nothing else, I’ve come to understand that some closure doesn’t look like grace or peace. Sometimes, it just looks like telling the truth. I’m going to keep looking to that truth, and loving myself as fiercely as I can manage.

Friends, if grief is a hole where love should be, then maybe healing is learning to live honestly and gently beside that emptiness.

That, I can do.

Here Goes Nothin

May 27, 2025 | ADHD, ASC, autism, DysAuDHD, dyscalculia, dyslexia, education, life, neurodivergence, school | Permalink

Last week, in a revelation that may surprise many—but perhaps make good sense to a few—I received an autism diagnosis. This would have come as quite a shock to me two years ago, but in the year and a half since my ADHD reveal and bombshell dys-agnoses, so much neurodivergent sand has shifted beneath my feet. I plan to share much more about these discoveries and my experience with the DysAuDHD neurotype, but I need some time to collect my thoughts.

In the meantime, please wish me luck as I begin the liberal arts program at Delaware County Community College this fall. Living with the internalized shame of multiple undiagnosed disabilities, higher education always felt inaccessible to me. Now, not so much. Now, I feel more discerning and capable than ever before. Part of that is maturity, but the lion’s share is knowing there’s a reason why my brain works (and doesn’t work) the way it does—and a reason I feel the way I feel. A reason that isn’t just me being a neurotypical failure. This diagnosis is supremely validating, and it has brought me so much relief. The more I learn about myself, the less I have to be afraid of.

I’m still sad (to put it mildly) that I didn’t find—or wasn’t offered—the support that could have made a difference in my younger years. The truth is, most of my life has been ruled by a set of rigid, self-limiting beliefs that I was the author of. Or perhaps trauma was the author, but my inner children and I set about rigorously defending them. Time to do things differently. Time to try some new, previously impossible things. I can’t wait to see what I’m capable of once I get out of my own way.

P.S. If you are laboring under any suspicions and are considering a neuropsych eval or assessment for yourself (or a loved one), DO IT. The process can reveal things you didn’t even know you were hiding from yourself—conditions that might be holding you back or causing hidden shame, even as you plod along blissfully(?) unaware of their effects. Look and see what you can find. Knowledge is power, friends.

It’s like sunlight—illuminating, in my case, the dark alleys and gloomy cul-de-sacs of my learned limits. And sunlight, in the words of a very wise friend, is a powerful disinfectant.

P.P.S. Oh, and goodness. Ugh. Some of you may be wondering if it was smart to share details about this diagnosis with a certain reprehensible individual talking despicable nonsense about abhorrent registries. I can’t know whether some ethically dubious, patently illegal, or straight-up diabolical reason will someday make me regret this admission, but I refuse to live in fear of that possibility, especially when honoring and sharing this knowledge is so affirming and healing for me.

I have consciously and unconsciously hidden so much to protect myself. No more of that, thanks.

Dys-issues

May 20, 2025 | ADHD, dyscalculia, dyslexia, education, life, neurodivergence | Permalink

Hoo Nelly.

So, for reasons I’ll go into later, I have been trying to learn some stuff

A few weeks ago, I took a deep dive into relearning some rules about sentence structure and punctuation. It was challenging. It took loads of repetition and practice to lock in some of the grammar rules that I have been missing since my school days. Still, I was rewarded with some new (old) insights and a burgeoning confidence around my writing. It felt hard but rewarding.  

This week, I attempted to do a refresher of some basic math skills.  

Fuck me, man. 

All the work and review I have done has felt wildly ineffective and frustrating in ways that make me want to scream and jump off a bridge. Grappling with elementary-level math problems has made me weep. Piteously. Several times. And while I stumbled around the edges of my dyslexia when I was learning about sentence structure, I am *drowning* in my dyscalculia. I can feel my brain struggling in ways I have worked assiduously to avoid for most of my adult life. There is an engine seizing abruptness to when I hit a learning disability wall, and when I do, there is little room for course correction. It’s difficult to articulate, but there is this sort of silent white noise that takes over my mental processes, grinds my processing speed to a halt, gums up my working memory, and leaves me straight-up reeling. And friends, the emotional stories tied to those sensations are brutal. I have, historically, seen them as proof of my profound ineptitude and confirmation of my well-earned shame. 

This week has been a lot. 

So, I am still slogging away at math that my 11-year-old can do with ease. It’s not making me feel very good about myself, but I’ll keep trying. And if I can take any pride or satisfaction from this godforsaken process, it’s in that I have just not given up yet. Send me fortitude, friends. 

It’s Been a Long Fucking While.

January 12, 2025 | Alzheimer's, caregiving, dementia, life, mental health, selfcare, Uncategorized | Permalink

My mom died a month ago. 

I have everything and nothing to share about this. I am not even sure what kind of post I want or need this to be. About her? About me? I am left living with only one of those things, so here we go.

As most of you know, I’ve been living with my folks and have been their primary caregiver since the summer of 2018. The decision was largely made because, though she didn’t have a formal diagnosis at the time, it had been clear for years that my mother was developing some manner of dementia.  

There were so many moments in the past 6 years that will live, branded into my heart and mind. Tedious, Sisyphean days and excruciating stretches of time that were heartbreaking and frustrating beyond all measure. And throughout all of this, bright moments of joy, reward, and growth that took my breath away. 

And in the end, hospice was the stage when I had the most support but it was also the most labor-intensive and emotionally draining. I worked so hard each and every day to provide the hands-on care that was required and to do right by my mother. I plumbed the depths and scoured the dark corners of my heart and head to find acceptance around our relationship… and the lack of it. I lost my mother in pieces over years and years. Ultimately, I did the best I could with what I was given and the tools I picked up and honed along the way.

I am deeply gratified that I could grant her wish to stay in her home until the end. Glad too that the care she received was offered by her family and a small group of dedicated and loving professionals. 

And despite all of this, in the end, she was so profoundly diminished and she was truly suffering. And when it came time for her to pass, she slipped away into death in the same manner she lived her life – gently, cooperatively, and without much of a fuss.  

I see how grief will stay with me for as long as it chooses; grief over the trajectory of my mother’s life and her final years, grief over the stress and drain of being a caregiver – especially through the entirety of the pandemic, grief in unexpected colors and flavors. Let it come. 

But I also know that I am not mourning my mother’s passing. I am glad for her. She has been released. And this atheist heart knows that this is a gift. Even oblivion is a kindness compared to an agonizing end brought about by dementia. I am relieved for her and for myself. 

Let her rest in peace and wholeness. 

And may I remember the lessons I learned, the grace I tried to inhabit, and the privilege it was to endure this trial while simultaneously reaping the immeasurable rewards. 

Mishaps

December 21, 2020 | Alzheimer's, caregiving, dementia, life | Permalink

Yesterday, my dad used a Le Creuset baking dish to try to fry an egg on the stove top. When he cracked the egg into the dish, it shattered into 30 pieces.

Not a fry pan!

Today, my mom put toothpaste on a bar of soap in order to brush her teeth.

Not a toothbrush!

THIS later insanity, I caught in the nick of time. I was not so timely as to prevent the demise of my favorite little baking dish.

Things are getting weird over here. 

New Feature! Things my dad can’t remember!

December 9, 2020 | dementia, life | Permalink

Things my dad can’t remember :

What happened yesterday.

The date, day of the week.

How to manage his own finances.

That my mom can no longer eat certain foods, and/or needs help in the bathroom and on the stairs.

That I have begged him on more than on occasion not to watch violent or sexually explicit tv while the family is likely to walk into and wish to spend time in the kitchen.

Life is getting interesting!

WTF

December 9, 2020 | Alzheimer's, caregiving, life | Permalink

What the hell happened? How did I just drop off the map in March and, quite literally, forget that this blog was sitting here? I’ll tell you. COVID happened and they sent my kid home from school and she has not been back since. A spring, a summer, a fall and it’s now December. So much has fucking happened. When the pandemic started we said wishful things like,”by the time it’s our birthday” or “by Halloween”. God. It’s so bad with no end in sight.

Let see, first weeks of what I called Homeschooling, then a month or two of actual virtual school, and then summer vacation. That went smoothly enough. It was hard, but we escaped to play outdoors with friends from time to time, we swam in a river in Maryland several times, and we waded in our own like a slice of kiddie pool heaven in the backyard. The most noteworthy thing was my hair growing back. Sounds easy enough, but it was a long slog to be sure. So much anxiety about staying safe and healthy. The kid took up all of my free mental bandwidth and I honestly think I completely forget about this blog by April 1st.

Half a year passed. September brought disaster. My mom got sick with sepsis and spent a week in the hospital. Had I been writing here during any of that, you would have heard an earful about hospital delirium and how shocking it is to finally see a dementia patient so confused they are willing to poop in a cupboard. But during all of that, I steadfastly did not remember this blog!

I chose to keep the kid out of hybrid learning in order to keep us all less exposed and that has been a fucking nightmare. Months in, I think we are finally hitting our stride, but it’s still not easy.

So, things are changed so much. Life was turned upside down, not one but three times.

What, you might wonder, got me thinking about this place again? What prompted me to return? I got the bill for the hosting. It really took an invoice to jog my memory.

So that it. The quickest, bare bones update I can muster. I have decided to pay the bill and see what I can offer. Stay tuned.

Just Plain sad.

March 17, 2020 | Alzheimer's, dementia, life, patriarchy | Permalink

My Aunt died today. A quick and intense battle with ALS. I guess if I could choose 5-month struggle with ALS or years and years with Alzheimer’s… oh, man. 

So I told my mom first thing in the morning. She is weirdly spared her grieving today as she can’t seem to remember for more than about 5 to 10 minutes. She remembers the hours we spent with my aunt last week. With driving, It was a whole day affair. My aunt was mostly immobile and asleep much of the time we spent together. We spent several sad hours that way and so my mom has a firmer memory of this. As such, mom knows something is up and has asked me about her sister several times today. “How is Weezie? Is she still with us?” Little things are filtering down. It will be interesting to see how the coming days play out.

My folks don’t spend a lot of time together outside of the kitchen and no one spends much time in the kitchen except my dad and this first and only love, the TV. I speak with about 90% certainty when I say that my folks only had brief moments together today and that I was with them for most of that time. My father had nothing to say about his sister in law’s death. He did not ask my mom how she was or what she might need or what she might be feeling. 

Grant it, I did leave them alone after dinner and they are both still down there, but my dad also turned his favorite TV show in at 7pm. So Yeah. Not much conversation is happening. Some might be tempted to suggest this is because he knows her limited memory will make this questions pointless or triggering, but to this, I can only say that he denies her dementia in almost every other way and insists she can retain memory in the most routine fashion (like suggesting she can be left home alone to deal with arriving plumbers and the like. Yes, this really happened.)

So just a tiny peek into my father’s world – too mortified or uncaring to actually ask my mom how she is after her sister has died. It’s sad. Just plain sad.

Sad face. Covid-19 style.

March 14, 2020 | caregiving, health, life, mental health, parenting | Permalink

In the days leading up to the covid-19 social isolation, I felt a distinct thrill like you might on the eve of a snow day or the moment the lights go out and you have to find the candles, but as I face this first full day, I just have to say that I am tense beyond what is called for. I think as an adult I’ve always faced uncertain and exhilarating times like this with company that I wanted to keep – with my housemates or my partner, but now I find that I’m facing potential weeks of such isolation with people that is effectively my job to take care of. I don’t want to spend this time with my parents. I don’t hate the idea of spending this time with my daughter but I wish I had somebody. Else.

The Hardest Part

March 13, 2020 | caregiving, life, mental health, patriarchy | Permalink

When I decided to move home to be the full-time caregiver for my family, I expected the hardest part would be to manage my mom’s ever-increasing dementia. Of course, this would be hard. The world tells you how hard this will be and I had few illusions. I also wondered if being a for-real stay at home mom to a then 5-year-old in half-day kindergarten might be a close second. I had always had breaks from the kid for at least 4 hours a day while I worked. Half-day K was basically 2.5 hours a day. She had had longer pre-k days. Anyway, those were my expectations and I guess at first that’s how I leaned into my new circumstances. Adjusting to mom’s increasing dementia will always be a challenge and a process. The year of kindergarten and that first real summer vacation were intense. I relied on screen time much more than I care to admit. 

BUT, all this said, the truth of my situation took some time to solidify and become clear. Months had to pass before the wool started to shift away from my eyes. The hardest part of my situation was not my mom or my kid. It was my dad. The 80 something-year-old man whose house I now lived in. And this is an important distinction. My daughter and I live in his house. Not our house. Not even my childhood home. An important distinction. I am really not joking when I say that the hardest part of my life now is because of fucking patriarchy and how it has allowed this man to be in charge for his whole life without really doing all that much to earn that control. I wish I was joking.

A year and a half later, there are plenty of humorous or frustrating anecdotes I can share with you. There are also things too sad or rage inducing for me to want to even share.  But please let me be clear – My Dad is the perfect product of the patriarchy. It’s just that simple. His needs and his comfort come first at the expense of all else. This is his house and these are his rules. In his house, what he says goes and our is not to question why. Ok, even as I type these words, I have a sense that they might be misleading. He does not say these things outright. In fact, he is remarkably distant and checked out, but man, this is the unspoken agreement that my father brokered with my mother decades ago. Before they even had children and I bet. And it was handed directly to my father by his parents and it was impressed upon me and I presume my siblings with a certainty and finality that leaves me breathless at times. It can be difficult for me to put into words something so enormous, that I was taught without direct instruction or acknowledgment. It’s gonna be tricky for me to convince you (and likely others are my family and community) how profound and pervasive my training was and what the expectations in this house still are. But I can easily insist that the hardest part of my life now is how the dominance of this male figure looms for me and my daughter. And for my mother. She has tacitly enforced all of these assumptions and programing and so to some degree, I feel inclined to say, “She made her bed” because honestly, I learned the importance of my father’s position FROM HER. But it’s still heartbreaking to see how little care my father is capable of offering his wife. How easily he can disregard her medical condition, her emotional needs, even her physical presence. 

So there we are. My dad is a dick. He has his kind, funny moments. He is a lot freer with his money than I ever expected him to be. But that’s about it. Most days, even his version of clam and laid back seems toxic to me. And that is mostly because of his media consumption. From 7:30 am to 10:30 pm, he listens or watches. Right-Wing talk radio. Youtube. Fox News. Law & Order SVU, Forensic Files, Court TV, Chair throwing talk shows. And all of it is at TOP VOLUME. He does not stop to think about how triggering or simply annoying this might be. Even after being told time and time again, he is confused about, for example, how a tv show about children being molested or women being murdered by their husbands is unpleasant and best and at worse, grossly inappropriate when a 6-year-old is in the room. But he wants it, so he gets it. 

And the absolute worst part? I watch as my father scolds and diminishes my female child and I am both enraged on her behalf and my own. Because each chastisement and belittlement, each insistence that our needs are less important than his, are a repeat of what was offered to me at her age. It makes my blood boil. 

When I was a teenager I hated my father. I just did. Did not have much love for my mom either honestly. I left their house with a “good fucking riddance” on my lips and thought I would never look back. And for years I stayed away for everything but major holidays. More years passed. Feelings were tempered. At some point, I returned home and everything seemed so quaint and kind that I thoroughly second-guessed my own experience. God, I was an angry teen. What the fuck had my problem been anyway? I told myself that the most significant difference was that my dad had retired and “gotten nice”. By the time I was in my mid-30s, I had forgotten my anger and told myself it had all been in my head.

Now, a year and a half later, I am completely blown away by how on point I had been as a young woman, how justified my anger had been. In the 90s, I did not have the literal or emotional vocabulary to express what they had done to me. I do now. I don’t want this blog to be a place where I only talk about how difficult my life has become or how much I hate my dad, but I am pretty sure I am not gonna be able to keep it all to myself. 

It’s the thing that will probably keep me from telling my friends and family about this record. We shall see.

This shitty week

March 13, 2020 | caregiving, health, life | Permalink

This week, I took my dad to the ER for what looked like a heart attack (it was not). My aunt was moved to hospice and my cousins have no idea if she will be 5 days or 5 months. I scheduled an appointment with a lawyer for the first time ever to make sure my dad’s will/estate is in order (it’s not). My mom’s doctors are insisting that we get her to sign a DNR cause “elderly patients with dementia do not recover from CPR”. I had a memorial for a friend this weekend that was just canceled due to covid-19 worries. AND they are closing public schools in all the counties all around us because of the same. This week can eat shit.