AUTISTIC AND FITSPIRED

Content Warning: Fatphobia. Objectification.
Also, exercise. Uggggggghhhhhh.



 

I find physical exercise of any kind tremendously uncomfortable, sometimes excruciating. The fast breathing, the sweating, the movement, the strain. Just, all of it. Some people claim to “love exercising!” but some people also claim to have seen the Loch Ness Monster.

I can't conceive of it.
Jog away from me right now.


For my fellow struggling exercisers who remain: Raise your hand up and face-palm if you’re familiar with “Fitspiration.”

You know, those awful images circulating on social media depicting a thin, toned person - usually a half-naked woman - with a motivational quote about “work out now so next year everyone be like holy sh*t.” (That’s a real one. I couldn’t even make that up if I tried.) Below please enjoy corrected versions of dreadful fitspiration graphics courtesy of buzzfeed and ragetimeroastbeefy, which I share in attempt to  make up for the description of that first one.
 


Whenever I come across a fatphobic, objectifying fitspiration graphic, I think how abhorrent it is and how I wish I could slap some sense and sensitivity into the person who created it.

And, how my own version of fitspiration would just be a picture of me standing still, looking sort of dazed, still in my pajama pants, holding a dumbbell in one hand and my cat in the other, with my shoelaces tied together.

The quote would read, “Good try. Whatever happens, try not to land on the cat.”

 

As a little girl of nine years old, I would hide in the girl’s bathroom during P.E., pretending to be throwing up or suffering from asthma. I didn’t actually have asthma, but it got me out of P.E. a few times. In my bedtime prayers, I would squeeze my eyes shut tight and pray for rain the next day, so I wouldn’t have to play outside at recess. It was all so chaotic. The shouting, the laughing, the throw-it-over-here and running laps and trying to hit the ball straight and hard enough to make it go.

I was dreadfully uncoordinated and overwhelmed all of the time.

My parents persisted in trying to get my sister and I to be more active children. She, with her baby dolls and me with my books. One year for Christmas, my step-mom (who, incidentally, had been the very first female on her high-school water polo team and was quite athletic) gifted us sporting equipment: a soccer ball, football, baseball glove and bat. I knew right then that she hated me and was hoping I’d run away to my grandma’s house.

My one bad grade in high school was in P.E. where I flatly refused to change into my gym clothes, exercise, shower and change clothes again. I was a straight-A student, in Advanced Placement everything, with a 4.29 GPA. How could I possibly understand - much less explain to my teacher - that I was absolutely incapable of making that many transitions in a 45-minute period of time. I had tried initially, of course, but  was reduced to tears each time and found myself useless the remainder of the school day.

My deep loathing of physical exercise was solidified.

After I gave birth to my daughter, I was 30 or so pounds heavier than I liked, and my sister talked me into going to the gym with her. I paid my sign-up fee and went exactly twice. There were dozens of people. Moving in different ways. I was so anxious and so overwhelmed by the sounds of the machines and the bright light and the smell of body odor and the sensation of the air from the ceiling fan on my hot skin. I felt so guilty about wasted hundreds of dollars in gym membership fees that year, but I couldn’t bring myself to go.

Many years later, my sister asked me to try a yoga class with her. I made it through the hour… barely. When I got home, I made it into the bathtub, sobbed until I was exhausted, climbed into bed and slept for 10 hours straight. I hated myself for being so weak. And that was my last attempt.

Until now.
 

In 2015, I was formally diagnosed as autistic. I spent last year becoming informed about my neurology, and becoming more aware of the challenges I always knew I had, but couldn’t name or understand. It suddenly made perfect sense that I struggle so much with physical fitness.



While I'm a proudly neurodivergent person and I celebrate the unique way I perceive and interact with the world around me, challenges come with the territory, and disability is real. My executive functioning  issues make any combination of tasks a little tricky. Tasks that I’m not familiar with, involve coordination and simultaneous mental activity, and cause me varying degrees of sensory discomfort are all the more so. 

I have certain physical limitations with regard to gross motor skills. In effect, I run into things that I see are there and I trip over my own feet. I know now that my sensory sensitivities are legitimate and are sometimes debilitating. I know my difficulty planning and organizing makes it difficult to accomplish tasks that seem simple to other people. Now that I know what’s tripping me up (pun intended), I can get a little help and set myself up to succeed.

Obviously, fitness is imperative for the health of every person - autistic or not. As I’ve aged, I recognize its necessity more and more. Over the years, my lack of physical activity and my unusual dietary patterns contributed to my overall less-than-awesome health over the years. There was a time when eating two handfuls of Cheez-Its and drinking a Coke was lunch. I’m proud to say that I’ve worked hard in the area of nutrition, learning to eat more healthful foods more consistently. I consider myself so fortunate to have access to nutritional food options and the ability to prepare some of them myself.

My goals in the coming year are to address my ongoing struggle with physical activity. To be more present in my physical body, to try to appreciate my sensory experience, and to sit longer with discomfort. As much as is reasonable.

I began as many of us do on January 1st.  Motivated. Determined. So, there I was on New Years’ Day, jogging (read, “walk-flop-shuffle-scuffing”) at home, and my internal monologue began, growing louder and louder, sounding something like this:

‘I hate this. This is the worst thing. I’m hot. Oh my god, it’s so hot and I can’t breathe and I’m going to pass out. My heartbeat is erratic. It’s really erratic. Uh-oh, I might be having an heart attack. In fact, I’m pretty sure I am. Better stop and look it up on WebMD.’

I didn’t do that. Instead, I Googled “autism fitness,” and nearly every result lead me to the same place.

 

I discovered Eric Chessen, founder of Autism Fitness, an author, advocate and resource for bringing fitness to the autistic community.

Not only was he willing to share some tips to get me started, he encouraged me to pass this on to my autistic friends.

Eric writes:
 

first, some FIELD NOTES AS COMMENTARY ON SARA LEEANN'S Essay:
 

Regarding memes: Most of us rational and halfway accomplished trainers sit around in our off-hours making fun of awful fitness memes. We're usually too busy running our businesses to create this shit.
Regarding Sara’s awful but not uncommon PE and fitness experiences: Most of what the rational trainer community does is de-program (think similar to psychological rehab programs for torture survivors on a lesser level) people from the horrendous experiences they had in PE or walking into a gym. So most people enter into the gym/fitness world having a skewed perception because their experiences were so bad. 
Regarding my own experience: Finally, as to my own history, I was an overweight kid who hid from PE class almost all of junior year and when I came back in the coach says "Eric, you been here the last few months?" "Yeah coach." "Oh, musta been cause you lost all that weight" The weight I lost was because I walked into the weight room on my own and just started working out. Because I hated team sports and had few friends. And team sports are the foundation of most PE programs now and it completely sucks. Because the only reason for it is a cultural obsession propped up by a billion dollar youth sport industry.



Have you ventured past a commercial gym and felt intimidated, confused, and overwhelmed? Super secret information; so do most of the neurotypical adult population.
 


Physical fitness is an odd pursuit in the US. Where decades ago information regarding how to get fit was difficult to find, we are now bombarded with ideas, products, places, and promises. I’ve spent over a decade breaking down fitness into three components for the ASD population; physical, adaptive, and cognitive. It is my lofty goal in this article to present the most important concepts for fitness not as a have-to, but as a want-to.
 

# 1: The Why
 

Physical fitness is important. There’s rarely an argument with this statement but what do we actually mean by fitness? What are the most important benefits? A good fitness program has both proactive and preventative benefits. Appropriate and progressive training enables us to be stronger, move better, feel energized, and, as validated research has demonstrated, optimize cognitive and emotional abilities. Strength and stability gained in the fitness environment generalizes to daily life skills, which is the most important attribute of any fitness program.
 

# 2: The What
 

Strength and mobility are the foundation of healthy movement. Quick analogy; in our American culture we tend to view sports-based activities as the “top of the pyramid” or the greatest possible expression of physical endeavors. Rather than a pyramid, physical activity is more like a tree. You can branch off into a wide variety of different pursuits (team sports, swimming, biking, climbing, etc), but the roots and the trunk of that tree are in general physical abilities and active play. Active play is a separate article.

So what encompasses general physical fitness?
What are the go-to activities that provide the most benefit?



We can look at the fundamental movement patterns:
 

Squatting: Movement towards the ground

Pushing: Movement away from the body

Pulling: Movement towards the body

Locomotion: Getting from point A to point B

Hinging: Picking things up off the ground
 

While this is a general list, it provides the foundation for what each and every one of us needs as part of a strength and fitness program.
 

From this basic list we can start filling in exercises for each movement pattern:


Squatting: Body weight squats, loaded squats (back, front)

Pushing: Push-ups, overhead presses

Pulling: Pull-ups, Chin-ups, Resistance band pulls

Locomotion: Crawl patterns (bear walks), jumps/hops, sprints, carrying weighted objects

Hinging: Deadlifts, kettlebell swings
 

# 3: The How
 

Putting together a fitness program can be an overwhelming task. The “What” above provided a list of the most essential exercises, but how do we put them together in a program? More importantly, how do we learn to perform these exercises safely and effectively based on our unique abilities (we all move a bit differently).

Finding a qualified coach in your area (even online) is important to ensure proper individualized programming. But what qualifies a qualified trainer or coach?

I’ll share with you some inside industry information.

There exists something approaching 200 different fitness certifications available. I just tried to Google it but couldn’t find a consensus. Many of these are garbage. They entail a correspondence course with basic anatomy and a list of exercises. There are perhaps a dozen worthwhile certifications (along with BA and Master’s level university programs) that provide a good educational foundation. The truth is that much like being a sushi chef, fitness training is best learned in an apprenticeship/mentoring model in addition to some formal education in functional anatomy, kinesiology, and other junk that isn’t necessary for discussion here.

Small, independently owned strength and conditioning facilities tend to have the best trainers. These are the men and women who really, really care about their clients. I meet them all the time at seminars. They aren’t the ones advertising in magazines or on the internet (in large marketing campaigns). Their gyms are usually sparse and filled with free weights (this is a good thing).The irony is that these are the gyms that seem most intimidating to most of the public.

If you aren’t ready to commit to finding a trainer or joining a facility, you can put together a program at home. While you can begin with body weight-only exercises including push-ups, squats, and pull-ups (there are some sturdy doorway chin-up bars on the market unlike the ones I regularly ripped off the doorframe as a 10 year-old).

Soon some equipment will be needed. I prefer to keep things simple. A few dumbbells, a few kettlebells, a doorway chin-up bar (I like GorillaGym.com), and a sandbag (I like BruteForce.com) will help you progress. Starting with 2-4 exercises per session for 2-4 sets with 8-10 repetitions is a gateway to a good foundation.
 

#4: The Motivation
 

Of course none of the above matters at all without the motivation, consistent motivation, to train. When I was a junior in high school, I walked into the weight room after school one day, having no idea what to do or any guidance, and began to “use” the universal machine with its chest concentrator thing (technical name the pec deck), pull-down bar (technical name the lat pull-down), and some other relatively useless devices that I haven’t used since. I wanted to start lifting weights to change from an overweight kid into…something else.

Writing this article now almost twenty years later, my biggest challenge is to disregard the fact that I actually love training in order to convince those who do not, or have not yet begun, that the first step of motivation is to start, and the second step is to recognize that the initial motivation will dissolve, and that dedication and routine can take its place. Motivation will return.

It is also true that becoming stronger usually brings an enjoyment of being stronger. The journey begets the journey.

***

 

I truly couldn’t agree more with Eric about the journey.

I know that despite my struggle to deal with the overwhelming sensations in my body as I exercise, that I’m getting stronger every day. I don't always manage to stick with it as long as I'd like, but taking any action (no matter how small) propels me further toward self-confidence and wellness. Sometimes my journeying looks a little clumsy and feels uncomfortable, but the important thing is that I'm still showing up and still putting one sneaker in front of the other. Sometimes, I even tie them properly.

Thank you, Eric, for sharing your knowledge and experience with us. I especially enjoyed your commentary and I'm looking forward to incorporating these basic exercises into my routine. 

Friends, if you live on the east coast, check out Eric’s upcoming seminar on February 6th. Otherwise, like me, you can consult with him online



I'll be sharing more soon about what I learned with regard to:


1.) choosing the right physical activities according to my strengths;
2.) exercising safely when balance and coordination are an issue; 
3.)  dealing with accompanying sensory sensitivities; and,
4.) knowing how much is too much - before meltdown!



As always, thank you all for the gift of your attention. If you're inclined, come back and chat with me on Facebook. Leave a comment and let's learn and inspire each other.

What are your favorite (or least un-favorite) kinds of physical exercise?
What are your challenges with regard to fitness?
What has worked for you?
 

Acknowledging My Wounds, I Rise

Trigger warning: candid first-person account of surviving narcissistic abuse, emotional abuse, sexual abuse.
 

 

Secrets become shame. Shame that isn't even ours to carry. When we inquire deeply into the recurring patterns in our own stories, and acknowledge them - even just in a whisper to ourselves - we can begin to accept our loss and integrate our lessons.

When I insulated myself and tread on the surface of my life, I made it seem almost like it never happened. Except it did. And, lest I forgot, it happened over and over again in nightly nightmares, and in moments I couldn't always avoid like when I see a man with long sideburns, or hear the words "good girl," or when I smell cigarette smoke. And, still sometimes when my husband touches me just so. Or, sometimes when he tells me he loves me and I'm the only one for him. Really, any time I feel anything that I think is real.

That's often what happens when you've been gaslighted for decades.
 

As an autistic person, I have difficulty picking up on and understanding the subtleties of social interaction, the nuances of body language and tone, and most especially the intentions of others. As perceptive and exquisitely sensitive as I am... I can't see the man behind the mask, the wolf inside sheep's clothing, no matter how sharp his teeth.

I know this now, of course; but, I wasn't aware of my deficit - or how deep the resulting trauma - until I sought treatment for complex PTSD and was formally diagnosed as autistic a year later.
 

In her new book, The Confidence Game, Maria Konnikova writes:

"The true con artist doesn’t force us to do anything; he makes us complicit in our own undoing. He doesn’t steal. We give. He doesn’t have to threaten us. We supply the story ourselves. We believe because we want to, not because anyone made us. And so we offer up whatever they want — money, reputation, trust, fame, legitimacy, support — and we don’t realize what is happening until it is too late."
 

When I met Patrick, I believed I'd met my equal.
 

He quickly became a friend, and then a cherished confidant. A man I came to trust with my secrets, and my body, and my love, and my dreams of a future. 


His words were earnest when he told me I was the only woman he had ever loved, I was perfect for him in every way, and I'd ruined him for all other women; that protecting me was instinct and he took it seriously; that he was sorry we needed to keep our relationship private for now, but he was "working on his issues" with his counselor and soon he would introduce me to his family; when he told me that he taught martial arts in the evenings, so we couldn't eat dinner together, but he'd come to me at night to watch movies and tuck me in. Sometimes he'd sleep beside me all night and in the morning I'd make him peppermint tea, and he'd say one day we'd have our own place together and do this all the time.

I don't know when or or how we decided to enter into a dominant-submissive relationship. I don't remember who suggested he would be my master, and I, his pet. It seemed a natural extension of our relationship up until that point - me, craving his time and his affection, chalking up the discomfort I felt under his gaze to bashfulness and butterflies; and, him, holding out his glass for another Jameson and water, slapping me on the ass as I shimmied back to the freezer.  


The trust is that I wanted someone to tell me what to do.

The world had always been such a confusing place, people were so wishy-washy and indirect, and I was so overwhelmed by it all. His directives steadied me. I wanted someone who appreciated that I didn't behave like other people, other women. No matter how I tried, I couldn't be lighthearted, talking of trivialities. He encouraged my ideation and unconventionality. I wanted intimacy and sex... but, I was undone by light, tender touch, and I needed someone who could handle me, really handle me. He could. He did. 

How perfect. I'd finally found a partner I might be able to be happy with.

If only he would leave our apartment with me, go out to the movies or out to dinner with me. If only he'd let me tell my friends and family about him. But, that would come in time, he said. 

He made it crystal clear when I displeased him by being too needy or not complying with his wishes by texting to say that he had to work late tonight. And tomorrow. I wouldn't see him for a week. That was hard.

But, so long as I was his "good girl," his "precious pet," he was attentive and loving.


Before I found out he had a VERY long-term girlfriend right across town and a secret life I wasn't aware or a part of, I had voluntarily opened my life to him and given him all I had. All I had left.
 

Before I discovered the depth of his deceit, I'd done everything and anything he'd asked to show him my devotion. I'd kneeled for him to lock a heavy, copper collar around my neck.  I'd let him gag me and bind me and tie me down. I liked some of it, and I pretended to like the things that made me sick to my soul.

I was compliant, I stayed silent, and believed what he told me was true. 
Because I was conditioned for this and it had happened before.
Because at my very core, I believed I couldn't trust myself. 

I believed his lies.

***

 

 

When I was 12 years old, my favorite teacher - someone who was understanding of me, someone I looked up to, someone who claimed to care for me and promised to protect me from the bad things happening all around me - had me over to his house after school while my mom was running errands. They were seeing each other, I think. I didn't know for sure. People were a mystery to me.



He was mowing the lawn and I sat outside, my nose in a book, enjoying the smell of fresh cut grass and the buzz of the machine. I went inside to use the restroom. When I opened the door, he was on the other side, sun-tanned and sweaty and blocking my way. He was smiling. He had a nice smile with nice, straight teeth.

He said, "Have you ever been kissed?" 
I sensed something was really wrong and so I lied.
"Yes."
"By who?"
"I have a boyfriend,"
And I did. I'd seen him 3 times since school started and we'd never even held hands.

He grabbed me then, and kissed me with his tongue, his moustache feeling like sandpaper against my skin. When he let go, he said, "Now you've been kissed." He chuckled low and deep, and I wanted to leave the bathroom but I couldn't move. He was stroking my arms now. I looked at the floor. 

Suddenly, he shoved me away from him and I fell back, arms reaching, and found the cabinets to brace myself against. He turned away from me and growled, "You better run or you're going to get more than a kiss."

I ran out of the bathroom, out of the house, down the street, down the block, two blocks, three... my bare feet raw and sore on the asphalt. I remember how much my feet hurt. I don't remember anything else. I don't know how I got home. Mr. *H sexually molested me for almost a year while he dated my mom, once right there under a blanket, while she was in the same room.  Smiling across the couch at me. 

I thought it was my fault because I loved him like a little girl loves the father she never had, and I let him do what he did, and he was so nice and handsome, and he told me it was okay, and so I didn't scream or claw his eyes out.


My parents and church and the society of which I was a part let me believe this was true. That it was my fault. I should have spoken up sooner. I should have cleaved to God and he would have kept me out of harm's way. I shouldn't have worn that cropped top to school.

I believed their lies.

(Many young girls came forward after he was jailed, so this isn't just my story to tell, which is why I stop here.)

***

I'd never told anyone that story, but I told Patrick. After we'd been friends for a long time.
He knew all my weaknesses and all my wounds. That's how he knew how to exploit them.
"Don't cry, my emerald eyes. I won't ever let anything happen to you ever again."

 


So, how do we learn to trust ourselves again (or some of us, for the first time) when we've been so mislead and manipulated and maltreated? 


We commit ourselves to the work.

We stop the blame-game. Especially the self-blame.

We practice compassion for others and compassion for ourselves. 

We safeguard ourselves by understanding what we need, and why.

We learn to develop healthy boundaries in our relationships with others.

We recognize that we each have the capacity to do great harm, and also to heal from great harm.

We let ourselves be numb. And, we let ourselves feel deeply the rage, sorrow, fear, shame and anything else that comes up for us, because it's all valid and it's all ours. We don't censor. We don't say, "I'm sorry" for our feelings.

We uncover any unique limitations we have based on our neurology, psychology or even physiology. Limitations in keeping ourselves safe. And, we get the help we need to safely interact in the world.

We realize it's not about trusting other people not to hurt us. In fact, there is some power in the ability to recognize that people are living with their own wounds and they often unintentionally wound us. And, that some people are shady as h*ell, and others  ugly deep down to their core, and they'll quite purposely and even violently wound us. It's not a nice thought, but it's a real, raw, right-between-the-eyes kind of truth that we need to accept.




As we do these things at our own right pace, we empower ourselves. We build confidence in our ability to recover from our past, and to choose rightly for ourselves in the future.

 

Now, don't misunderstand me. I'm not insinuating that we wake up one day and we're all better, like magic. What I'm saying is that pain is not the same thing as suffering. I've found that living a miserable life, battered continually by the past in a nightmarish loop takes about the same amount of energy as living a charged existence, choosing my experience of it intentionally.

One of the greatest acts of power I have known is acknowledging my wounds like this... sharing my story with you. Saying, "I've been wounded. I've survived. I forgive myself. I rise." I hope the same for you.

 

Fairy Dust

An excerpt from my personal journal, dated August 4, 2010.
 

She is curled up, asleep, in the closet. When I was a small child, I used to sleep in the closet sometimes; although, this is not the same thing. She is not there to hide from the Hands or muffle the sound of the Voices. She did not pass out there with her fingers jammed into her ears and her cheeks wet with tears.

My girl is sleeping in the 10x16 walk-in closet, which has been fitted with a toddler bed dressed with ruffled sheets and a Ralph Lauren duvet; a tiny clothing rod hanging on the diagonal overhead for her tiny clothes; a 3-drawer miniature bureau to house her games and toys; clear, twinkling Christmas lights tied with hemp ribbon around the inner perimeter; family photographs attached with clothespins to the lights; and, a signed, original pastel illustration in a chunky antique frame just at eye level. She drifted off to the sound of my voice as I sang at her request, “Blackbird” by The Beatles. She is dreaming of bunny rabbits and blowing bubbles and cotton candy ice cream with colored sprinkles.

I’m four feet away, propped on pillows against my so-ugly-I-must-give-it-a--home-before-it’s-tossed-into-the-dumpster gold, velvet headboard that I bought for $10 at the thrift shop downtown. I can sit here with my laptop or a book, sip iced tea, and see my daughter sleeping in the closet, clutching her stuffed elephant and sucking on her nonny. My mom called my baby blanket a “nonny” so that’s what Olive and I call it, too.



And I figure this is evidence enough that life is maybe not as crummy and futile as it seems.



It will be enough on the days I weep in regret as I accidentally drive in the wrong direction after work toward my ex-husband of five years, and my ex-dogs living in our ex-house, which I filled with all of those very carefully selected “ex’ things in efforts to craft some semblance of a life wanted. It will have to be enough on the days I fight the shopping cart with the busted front wheel down the dirty lanes of The Dollar Store, chest heavy like lead, face burning, recalling the sad figure of my mom doing the same, remembering with shame (and now something like understanding) the food stamps, rice and beans, no hot water again, the hole in my left sole, the hole in the center of me I never could fill.

I hope it can be enough on the days I’m alone in this itty bitty studio apartment with it's broken stove and sometimes lukewarm water while my child plays at the lake on her paternal grandparents boat, lunches with daddy at the Club, gazes up in awe at a magnificent holiday tree lined with gifts just for her, sits with head bowed and eyes closed and says those rehearsed words I didn’t teach her around an impeccably set dining table complete with real, child-sized china, lives the life I wanted her to have - in lieu of the one I had - but couldn’t stomach living myself for the price.

It has to be enough on the days I struggle to convince myself to stay here in this town, this state, this country for those two or three times a week I spend with her, because, despite my vicious inner critic and those around me, I do have something of value to impart, something real and lasting to share, memories still to make with her… though I don't know yet what they are. Though they may involve only $3, plastic wings and imaginary fairy dust.

Please let it be enough.
 

Humbled Hard And Dirty

I had a surprising and thoughtful conversation with my grandmother this morning about homosexuality and sexuality in general. (Words cannot express the awesome of that opportunity, by the way.)

I said, “I want to live in a world where we don’t make assumptions about other people, and aren’t personally invested in anyone’s size, shape, race, ability, sexuality, none of it. We don’t form an opinion or make a judgement. We just see another human being trying to live their life, and we show them respect and treat them with dignity - because they deserve it. Because we all do.”

I got to thinking about my own experience with assumptions and stereotypes, pretending to be something I’m not, and trying to live up to impossible expectations. I thought about how I’ve suffered and how I’ve caused suffering in others.

For me, it’s always been about ability, intelligence and self-efficacy.

I’ve always placed a high value on being able to think and do for myself. I expected others to hold this same belief that intellect and ability are paramount. I delayed my own autism diagnosis by at least a decade because I couldn’t admit that I just couldn’t. I rejected the part of myself that wasn’t able, and turned my self-loathing on others who were a mirror for my own struggles.

I learned from those around me - and society overall, really - that being vulnerable was weak, that needing help was shameful, that ability and intelligence were what mattered most, and the goal was to do rather than be.
 

To people around me, I seemed alright.

Just a little girl getting off the school bus and rushing to lay out her school clothes for the next day. How enthusiastic she is! And, maybe a little quirky. A student reading and writing constantly, even at recess and lunchtime, appearing so studious and diligent about success.

An adolescent concerned about her weight, subsisting on Saltine crackers. A self-possessed young woman, busy, a little inconsiderate - chronically cancelling dates and plans with friends. Taken to flights of fancy, changing hairstyles, jobs, boyfriends, apartments and zip codes again on a whim. A bit of a cold fish, rejecting the touch of her new husband. A typical mother needing her “me time,” escaping to the bath tub.

The model employee, always on task, frustrated by small talk, not terribly well-liked by her colleagues because she forgets birthdays and passes on Secret Santa. Another female patient complaining of the ‘obvious things that come with having a vagina’ (sarcasm and disdain alert): fatigue, anxiety, restlessness, depression, brain fog, seeking escape in a bottle of vodka, then a bottle of Drano.

But, I wasn’t alright at all.

I used ritualistic behavior to self-regulate. Unsure how to socialize, or why I should want to, I retreated behind my closed door at the earliest opportunity. The steps and stress of preparing for leaving the house and scripting conversation to talk to people made me physically sick. No understanding of boundaries, I said inappropriate things and clumsily offended people left and right.

Food made me gaggy so I stopped eating. I was good at Anorexia. Tender touch repulsed me the same way slurping pureed bacon through a straw might. I relied heavily on alcohol to dull my senses. The scalding temperature and sound of running water in the bath was the only thing I found to snap myself out of fugue states and cope with overwhelm.

I couldn’t manage my confusing symptoms, so I acted and reacted, constantly searching for something that would make me feel safe. I was only ever happy when intensely focused on a project, and once my delicate process was interrupted, I couldn’t get my bearings again. I became so depleted from efforts to cope, to convince people that I was capable, I fell spectacularly to pieces and nearly took my own life.

Getting sober and seeking help for complex PTSD lead me down the path to discovering that I was autistic - and, that I have epilepsy. Awareness of my neurodiversity has profoundly changed my heart and mind about some damaging beliefs about myself, others and the world.

I’m pleased to report that I’ve been humbled hard and dirty. My lessons didn’t come easy, or fast, or cheap - and I’m glad, because I needed it right between the eyes in order to embrace this self-evolution. I learned that:
 

  • we can never truly know the burden that others are carrying. - people that can’t do certain things can do other things; and, people that can’t do anything at all are just as worthy.
     
  • I was an a colossal jerkface every. single. time I thought that people (including myself) who seemed unable to “get their sh*t together” were slacking or lacking.
     
  • the truth is, I really can’t function independently without support, but that doesn’t mean I’m useless or without value. - being a kind person is so much more important than being a smart person.
     
  • I have so much more to learn.


Wouldn’t it be wonderful if we looked at each other and assumed everyone was doing their best? Wouldn’t it be wonderful if we gave others the benefit of the doubt, realizing that we can’t know what another human being is thinking and experiencing? That’s the kind of world I want to live in. That’s the kind of world I’m dedicated to creating. I hope you'll join me. 

Thank you for being with me on this journey.
And, as always, thanks for the gift of your time and attention.

A Mother's Love, From A Distance

“It must be hard not having custody of your daughter. And being so far away. What’s that like?” she asked, something like sympathy in her voice.

I swirled my wine. “Impossible.”

She waited for more, but there’s just no more to say. I reserve my darkest, most desperate thoughts for my diary, and my most hopeful ones for the correspondence I send to my daughter 2,000 miles away.

I went home that night and thought how it doesn’t matter what it’s like for me, how badly it feels, how impossible it is. That isn’t the important part. The important part is the ever-present and enduring love between a mother and her child. The important part is that my daughter knows the important part.

I ripped a piece of paper from my tear-stained journal and scribbled this note to her:



“I once thought myself incapable of love, and in love’s truest form I was... until you.

I've fallen for you a million times. The soft petals of your cheeks, your liquid eyes, the chocolate chip freckle on the nape of your neck. The way your Happy bubbles up and erupts from your mouth like an orchestra of the most complex music I've never heard, and how your tears tasted salty-sweet on my kiss.

You’re growing up. We’re miles apart. I loathe the pink rhinestones on the back of those jeans your Gran bought at The Gap, and the way you talk about your cleaning lady with disdain, but no time, distance or circumstance could ever change a damned thing about my love for you.

You told me you were a Methodist. You told me you don't like cilantro anymore. You told me your daddy and step-mom let you. You told me you're a Wyoming girl now. There is nothing you could ever say that will change the maternal, eternal nature of my love.

I keep the pretty pictures you send me in the mail. And the ugly ones, too. I keep your first stuffed animal tucked here under my pillow. I keep an ever-growing “List To Live By” of important things I want to tell you; but, for now, just these few:

  • Don’t knock it ‘till you try it.

  • Say “please” and “thank you” whenever the situation warrants it.

  • Reserve “I’m sorry” for when you truly are.

  • Never answer the phone at the dinner table.

  • Monsters are real and they live inside us. Make friends with yours.

  • Your body, your rules. Seriously.

  • It’s okay to cry and smash things when you're hurt. But, wash your face and clean up your mess when you’re finished.

  • Get up and try again. And again. And again.

  • If you’re going to curse, be clever and know your audience.

  • Question everything - except your own intuition.

Most of what you need to know about life you've already learned or have always known. Like, the lyrics to The Beatles, "Blackbird" and how good mustard is on French fries, and that unicorns are real. (Although, you may not realize yet that the unicorn I'm talking about is you.)

On the phone we tell each other that someday we'll be together again, and we’ll live near the beach where the air smells of salt-water taffy and the water is the shade of your eyes. I don't know if it's true. But, I know this and you should always know it, too:

I love you.”

I folded the paper in half and put it in the shoebox where I keep all the other little tokens I will give her one day. The most important of these? The true story of a mother’s love, from a distance.

Dear Well-Meaning Person Who Insists I Can’t Be Autistic

Or: “Why Functioning Labels Are The Worst.”


This is an open letter on behalf of every autistic person who has been invalidated because they are too “high-functioning” (boo for functioning labels!) - too verbal, too smart, too friendly, or can otherwise mask their autistic traits and behaviors too convincingly.

I, too, have been dismissed by people who apply a one-size-fits-all approach to autism and perpetuate autism myths and misinformation. I have also had my very real need for assistance and support disregarded because I don’t seem autistic enough. I’m sorry you are hurting. I know that self-advocacy is hard work, a thankless job, and I know your struggle. This is for you.

 


Dear Well-Meaning Person Who Insists I Can't Be Autistic:

Thank you for taking the time to read this letter. It means so much to me.

Chances are you meant it as a compliment when you told me that I’m just too all-around awesome to be autistic. The thing is, that the two aren’t mutually exclusive. I don’t look autistic or act autistic because autism doesn’t look or act like any one thing. Autism is not one-size-fits-all.  

Some autistic people are above average intelligence and some below average. Some speak and some do not. Some can draw a picture, some can make themselves a sandwich, some can drive car, some can work full-time, some can discuss nuclear theory, and some can perform surgery. Just because an autistic person can speak doesn't mean they can make themselves a sandwich, and just because they can't speak doesn't mean they can't think and do for themselves.

Here’s a description of *two autistic people, one you may call “high-functioning” and the other, “low-functioning”:

Lee is verbal and of high intelligence. She lives with her husband and has one child in elementary school. Her special interests in ethnography and human behavior have served her well in her work as a part-time marketing manager. Her friends often come to her for advice because of her ability to assess risks and strategize. She is passionate about social justice and enjoys talking with others about human rights. She handles her sensory issues without assistance and recovers from shutdown by resting and taking a time out for a few hours.
Ann is hypervigilant and generally anxious, especially outside of a controlled environment and around other people. She never leaves the house without sunglasses and her headphones. She often loses her ability to verbalize coherently due to sensory overload so she prefers to do all her communication though typing. She paces, rocks, wrings her hands and picks at the skin on her lips when she’s nervous. She has great difficulty managing daily living tasks and gets “stuck” in activities without reminders to move on to something else.

 

Both of these descriptions are of the same person. Me.

When you say I can’t be autistic because I’m too “high-functioning” it hurts. It hurts me and it hurts those people you consider to be “low-functioning.” Not only are these terms totally  and completely arbitrary, they are just another way of saying whether or not you think an autistic person can pass for neurotypical (“normal”), and that’s supremely uncool.

Passing for neurotypical is not my goal.
Because I am not defective as an autistic person.

The autistic people you deem “low-functioning” are simply those who aren't pretending to be neurotypical. They can’t or choose not to hide their disabilities. This means their challenges are magnified and their strengths are largely ignored. Thus, their value and inherent worth is disregarded. The autistic people whom you see as “high-functioning” can and do sometimes pass for neurotypical, so we are accepted to a degree. You magnify our strengths but refuse to recognize or acknowledge our challenges. 

I am both "low" and "high" functioning on any given time, on any given day, in a variety of ways. 
I am autistic. I am disabled. I do struggle, and I do need help.

Please understand that assumptions, functioning labels, broad generalizations and stereotypes demoralize and stigmatize autistic people. It takes a lot of courage  for me to openly discuss my autism, to stop hiding my autistic behaviors and traits, and to ask for support and accommodation. I appreciate your respect and I trust that you will treat me with the dignity I deserve from now on. Thank you, again.

Sincerely,
Your Autistic Friend



*I adapted this fantastic example from one of my favorite blogs, Musings of An Aspie. Please visit and further educate yourself.

All Over Again: A Note To Non-Custodial Parents

If we could do it all over again, we wouldn’t join this rotten club. The Non-Custodial Moms. The Long-Distance Dads. The Every-Other-Weekenders. The Part-Timers. The Parents-Who-Aren’t-Really.
 

I have a daughter. She is 9 years old.

 

We haven’t shared a home since she was 4. Since then, I’ve been the non-custodial and, more recently, the long-distance mother to my only child. For five years, our relationship has been conducted during visits every-other-weekend, or once-weekly dinners, and now over the telephone and through snail mail.

The post office delivers another stuffed animal. A handful of Pacific Coast seashells in a small box of sand. A silly, hand-drawn picture of her likeness riding a rainbow unicorn. A hardcover book with highlighted passages that reminded me of her. A blank Polaroid on which I’ve written, “Our future together. Isn’t it beautiful?!”

I have a proclivity for detachment, but as I type this, I am strangled by disenfranchised grief and a scream trapped in my larynx, and I’m reminded of all the reasons I don’t share this part of my life with anyone.

Because, it hurts. Because it makes people uncomfortable. Because there is such guilt in being the “other” parent. Because “no one can possibly understand the way this feels.”

But, that’s a lie. I am not alone.

There are thousands of non-custodial and long-distance parents out there on the fringes, stigmatized and silent. You don’t have to say anything because I feel your loss. (And it’s real, and it’s valid.) I see you smiling vacantly as a friend chats with you about her kiddo’s upcoming birthday party or first day of school. You’re planning for your next summer vacation. You’re leaving another voicemail and buying more stamps. You’re listening to your empty house.

You are not alone.

I remember. I remember the first time I woke to an empty apartment, with the knowledge that my daughter was across town, and I wouldn’t make her pancakes or run a comb through her hair today. I had already hidden her toys and her Elmo toothbrush in a box until her next visit. Compartmentalizing seemed the most humane thing to do. Sensible, even. Shoeboxes of what-might-have-been and what-was-before taped shut and stacked up high, packed sensibly away.

I am not alone.

I can feel your shame, and it’s so heavy. You carry it around and set it on a barstool on a weeknight and order another cocktail. You’re wondering what your little one is eating for dinner tonight, wondering how it ended up like this, wondering when you’ll stop wondering these things. You’re calling a friend and making plans. You’ve got to stay busy.

You are not alone.

I stayed busy too. I did a lot of pacing the floor and lingering in doorways—neither in nor out, neither here nor there. I felt like a ghost, a figment of my own imagination, or maybe my own shadow. I told people I was doing OK. I said, “Oh, you know, it is what it is. Lots of people get divorced and don’t have custody of their kids. We make up for lost time when we’re together.” Change the subject.

A few years passed, and I got used to my daughter’s absence. I got used to regrets. You don’t think it’s possible, but you get used to these things, you know, and you keep living. Because the only alternative is to die. Every moment is a choice between life or death. “Will I drink this whole bottle of whiskey and run my car off the road, or will I go to work, come home, eat a bowl of soup and feed the cat?” Life. Or death.

We are in this together.

I can feel your determination, and it’s powerful. I see you doing what I am doing: building a new life around these new circumstances, slowly, surely. You’re realizing your bond with your child can’t be severed by time or space. You’re buying a card that says, “I love you all the way up to the moon.” And, you have every intention of proving it.

We are waking now to find that we are not ghosts or shadows. We are whole people and whole parents. We are accepting that things didn’t turn out the way we planned. We are acknowledging our folly and our losses and our responsibilities.

That hole in our lives where our children were will always be there, but we’ll no longer cram it full of people, places and things that don’t belong there. That’s the space we’ll hold open for gratitude to flow—our gratitude for this opportunity to become the people we would handpick to be our children’s parents.

Even if we could do it all over again.

Neurodivergent. Not Broken.

A little girl with tangled hair is reading her favorite book, the pages worn from love. She sits still like a statue in the bunny cage and revels in the cool dirt against her legs. She likes the tickle of the rabbit’s fur. She likes it here almost as much as her piano bench where she sits for hours and practices the same song until it is perfect.

She likes quiet spaces and animals and perfect things very much.

She doesn’t know it yet, but she is not broken.

***

In 2015, I was formally diagnosed as autistic.
 

I have spent my life up to this point certain I was defective. At 6 years old, digging beneath the playground equipment while the others squealed their high-pitched joy, I was glad to be left alone.

It didn’t occur to me that I didn’t experience the world the way others did. I knew only that I was bored and existentially bothered by the colors of things, sounds, sudden movement, changes to my routine. My stepmom asked, “Why can’t you go play like a normal kid?”


I said my prayers in the exact same order every night. Long, pedantic monologues to Jesus. I practiced smiling in the mirror. When I was anxious, I picked at my lips until they bled, and my mom put Tabasco sauce on my fingers to stop me.

I sobbed in frustration, wordless as I wrestled with sensations and emotions I couldn’t name. I rocked myself to sleep. Somehow, I could sing on stages in front of thousands of people but was undone by my boss asking me to explain the medical records auditing process I’d created to the rest of the staff.

I was diagnosed with chronic fatigue syndrome, depression, multiple sclerosis, complex PTSD, anxiety disorder, hemiplegic migraines and epilepsy. (I only have two of these.) Someone asks, “Have you tried Xanax/Ativan/smoking weed/meditation/a gluten-free diet?”

I nearly tried suicide.

Smiles and lies are the societal standard, so I became a master of mimicry. Nevertheless, my laugh always sounded hollow in my own ears. I muddled through sex by drinking enough to dull my senses. I muddled through just about everything. When I gave birth to my daughter, I became an expert on infant development and child nutrition. But I did not cry like the other mothers when I left her at preschool.

I was a failure at normalcy. I wrestled with self-loathing so thick and dark I hadn’t the words. Until one day: “Congratulations, Sara! I can say with absolute confidence that you are autistic.” True to form, I did not react emotionally. I spun my wedding ring round and round on my finger and took meticulous notes as she discussed sensory management.

Before bed that night, I looked up at my husband with an actual smile and said, “So, I was a miracle of self-preservation all along.” He smiled and gave me a forehead kiss.

***

We did our research and learned that autism is a neurological variation a person is born with. We learned that autism affects every autistic person differently, and that you can’t tell by looking at someone how their brain works differently. In fact, many autistic people expend exorbitant amounts of energy trying to appear exactly like most people.

 

I knew that firsthand. Even those closest to me may have no idea that we get “stuck” focusing on a project for 16 hours, forgetting to eat or take the dog out; may not be able to identify contented feelings, but may experience a meltdown of intense anxiety from a surprise guest knocking at our door, or a too-tight waistband or lukewarm coffee; may become confused with verbal instruction; may overshare about personal matters; and may be a walking encyclopedia of obscure topics with an ability to find the flaws in any system.

Most importantly, my husband and I learned that autism is not a tragedy.

The tragedy is the misinformation about autism floating around in the ether, which is to blame for even educated people insisting that only little boys obsessing over toy train sets and banging their heads walls can be autistic. The same misinformation that leads to misdiagnosis and maltreatment, or no diagnosis at all.

The facts are simple:

Autistic children are born. They grow up to become autistic adults - adults who are whole people and deserve to live full, meaningful lives. Lives with dignity. We can learn to live well in our own skin and in the world. All it takes is self-awareness, support and some accommodations. All it takes is understanding and acceptance.

Because, although some of us may not know it yet… we are not broken, and we can thrive.

Alone, But Not Lonely

I have spent the majority of my life alone. Alone in my bedroom, at the piano bench, up in a tree, in the bunnycage behind our house, behind a book, behind a camera, in front of the computer, in a crowd of friends and family and colleagues. "How sad," people have remarked, or "that sounds awful. Didn't you have any friends?" My childhood report cards and work evaluations said much the same, noting my intelligence and high marks for achievement, but suggesting I try to socialize more with others.

But I wasn't sad, and it didn't feel awful to be alone.

I made up worlds and characters and collected unicorns and cataloged every detail of my She-Ra figurines down to the number of eyelashes my Castaspella had. I sat in the cool dirt, smoothing it with the palms of my hands until it looked like a frosted cake, and the bunnies would come close and sniff at me, see I wasn't a threat at all and lay down against my thighs. I read my dad's National Geographic magazines and my step-mom's Danielle Steele paperbacks, and everything in between. I danced down canal banks. I rode my bike with no hands. My sister came along sometimes, but she was content to play quietly and never bothered me.

I was bored and lonely when I had to talk to people and frustrated when they didn't understand.

That in my solitude I was fine and free and full of curiosity. My solitude was delicious. It was my very own.
 

I didn't understand why socializing mattered so much but it became obvious early on that I was defective, so I acquiesced and tried harder.

 

I made friends. I usually had one-at-a-time. Because two was about 1.75 too many. I have lost a dozen or so acquaintances when I failed to notice when they stopped calling and coming around.

The four people I still call ‘friends’ today are those few who have enough other friends to validate them so that they don’t place any actual demands for emotional reciprocity on me.

"I know, I know. You hate people." an acquaintance texted the other day after I’d declined a social invitation. I responded with the obligatory smiley face emoticon. Isn't that what you're supposed to do? Or was I supposed to use the winky face? I never know which.

I credit Facebook, e-mail and text messaging entirely for my having any human interaction anymore - and, I’m so grateful because it makes me passable as a warm, generally pleasant person. Those smiley emoticons and exclamation marks have saved me from being outed as an alien life form, I think. Only my husband knows the truth of my extreme introversion; knows I don't require direct human contact but once every few days; and, that I prefer that contact be with him - because he lets me quote dead philosophers and dissect the intricacies of eldercare crisis in America while I iron the bedsheets and listen to Jay-Z.

My aversion to socializing has little to do with my liking or disliking people.

It’s just that I become so immersed in what I'm thinking and doing that I see nothing else. I hate to be ripped away from my projects. It's excruciating. I suppose there are some lovely people out there, but my ideas are so much more alive than most people. Couple this with my exquisite sensitivity to sensory stimulus and a host of other tics I struggle to hide in public, and you get a person who really prefers to be alone. Nevertheless, for several decades I pushed myself. I attended birthday parties, dance class, church group, Pampered Chef parties, baby showers, play dates, drinks, dinners, and resisted the urge to cancel at the last minute. Usually. Sometimes. The trick, I found, was developing a persona who would enjoy such things, coming up with a script, and then following my simple 5-Step Process For Not Being Perceived A Total A**hat:

  1. Show up. Smile. Hug. Follow the leader.

  2. Attempt not to say/do anything stupid.

  3. Fail and regroup in the ladies room.

  4. Watch the clock. Have another drink.

  5. Smile. Hug. Leave at the 1-hour mark.

All my acting was wildly successful. So much so, in fact, that I was regarded as the “sweetheart,” most likely to do exactly what was asked of me, with a smile. Basically, I’d pigeon-holed myself into exactly the kind of life I didn’t want and wasn’t capable of maintaining. Of course, in my youth I wasn’t aware I couldn’t keep up the farce. I thought because I had a high IQ and was becoming a true master of mimicry, that I could just carry on that way forever. Imagine my surprise when I faltered in my late 20’s, and then failed utterly in my early 30’s.

I was confounded. 'Damn it, apply yourself!’ ‘What is wrong with you?’ ‘Get yourself together!’ But, it was useless. The decades of feeling like an impostor, a misfit, and so exhausted from all the acting... being told countless times that my self-imposed isolation and rich inner world meant I was battling chronic depression or social anxiety disorder, and that I ought to get on some medication so I could be normal and have a normal life... I finally crashed and burned.

That social script and my 5-Step Process were incinerated.
But, I always liked a good bonfire.

I was diagnosed as autistic when I was 34 years old. ‘Oh. Well, that makes sense.’ I took a realistic personal inventory and stopped comparing myself to others. I realized I wasn’t so much a failure at Normal, as I was a startling success at surviving against pretty staggering odds. I started saying “yes” to opportunities that would allow me to work within my areas of strength; and, saying, “no” to everything that would set me up to fail by requiring I operate in direct opposition to what I enjoy and what I excel at. I quit my proper job, and quit trying to find another one. (I work better with no pants on, anyway.)

I finally recognized the truth of who I was, and decided the truth was that I’m okay. I’m acceptable as I am. I have something of value to offer the world. I do my work in the quiet of my room and I share it through words and photographs and paintings and songs. I’m mostly alone, but I’m never lonely.

Meltdowns Are Nothing To Be Ashamed Of

Since I was a small child, I have experienced what I can only describe as episodes of implosion.

There comes a point, my tipping point, when the bottom drops out, where the world is suddenly surreal… all Kubrick-esque, dancing clowns and screaming behind my eyes, and my circuits are blown, and I lose all control.

 

I wasn’t diagnosed as autistic until I was 35 years old, but I know now that my experience is called a “meltdown” — and that parents of autistic children are familiar with it the world over. But I’m not a child anymore. And it’s not as easy to justify these episodes in an adult, or to accept and understand that an adult can, indeed, fully lose control… no matter how intelligent they are or able they appear to be.

 

The photo series that follows is my visual documentation of the just-during-and-after effects of (what I now know to be) an autistic meltdown. I photographed this self-portrait series six years ago during the course of my photographic work, in the usual spirit of exploration and record-keeping.

I’ve always found that when subject becomes object in a self-portrait, an emotional distance is created which allows me to see and understand myself, at last without judgment.

 

My personal portraits and essays of the past decade have led me to this place of self-awareness and acceptance. By sharing my story, I hope to be a catalyst for eradicating the stigma of autistic meltdowns, of emotional trauma, of being less than, of not having it all together, of battling something that feels bigger than we are — in effect, de-stigmatizing the shame I think each of us feels for being a vulnerable, imperfect human being.

 

“What does an autistic meltdown feel like?” you ask.

I can only tell you how it feels for me. 

Begin taking a deep breath, but just before the apex, stop and hold it. For way too long. Feel the pressure in your chest and the panic rising in your throat. Feel your eyes widen and your head begin to throb.

It begins that way.

Then, I lose the ability to reason or be reasoned with. I go mute, absolutely unable to form coherent words or to speak with my mouth. I pace, whimper, choke, sob, pull at my hair, pick at my skin, rock and hang on to myself for dear life.

I am infantile, exposed, raw, terrified, paralyzed, utterly humiliated.

Then comes the numb. I am vacant. I am exhausted. I may stare blankly at something across the room or fall fast asleep.

 

“What can I do to help?” you ask.

 

You can remember that this isn’t an emotional thing. This is primal, physical. This is the system crashing. I can’t fight it, and you can’t stop it.

You can remember that every autistic person is different and may need different things during or after a meltdown, some of which may include: diminishing any excess stimuli in the environment, staying nearby, staying quiet and refraining from touching.

You can remember that the person you love is wired in a way you are not — and you will never, ever, ever experience this from the inside-out, the way we do. And that’s okay.

You can remember that we appreciate you for being understanding, for not making us feel defective and most of all, for loving us.

 

 

I am honored to be on this journey with you, whoever you are. You are not alone. There isn’t a thing “wrong” with you — autistic or not. You are a magnificent work in progress, your story is yours and you can use it to grow and become exactly who you want to be. 

A Matter Of Life. And Death.

Dear Mom:

It will be 15 years this month since you left us. Awhile back, I asked my husband to burn that box of your medical records and the legal discovery from your wrongful death trial that I'd carted around for a decade.  Nothing in that autopsy report or doctor testimony ever told me anything I couldn't read between the lines. I knew you by heart. 

When I was sitting on that filthy couch in the psych ward six years ago, Bree asked me, "Do you feel like you understand mom more now?" She has her own memories of you, rosier ones, so I hesitated. But, she had come all that way to sit and hold my hand when I was at my darkest - which is the absolute most grown-up thing anyone can do - so, I told the truth. I said yes... that if I hadn't lived your life (and death) story with you, I might have lacked the foresight to write my own alternate ending.

And, now - have the audacity to share it.

I worshipped you, wide-eyed, carving your teachings on my heart. I learned to smile no matter how much I hurt. I learned to cry silent tears. I learned to trust in the good of others and the grace of God. I learned to continue giving though I was empty, because we can always be filled up again. I learned a mother's love is deep and vast and self-sacrificing. I learned that this, too, shall pass.



Then, the day came when I looked at those Drano bottles on the shelf and decided to die; and, I had to choose between your legacy and creating my own. 

 

I looked into my daughter's face that morning and saw your liquid blue eyes, brimming with love for me. I took her to preschool and checked myself into the hospital. I finally reconciled the seeming paradox of your self-sacrifice and your selfishness, which, until this point had never been able to co-exist together in my mind.

Alone inside that place, I felt such compassion for you.
Alone outside again, I began working to extend that compassion to myself. 

In many ways, my choice to go seek help was a death. The death of the person I was. She who denied her truth, choking on tears behind closed doors, drowning her grief in cocktails, terrified of admitting to yet another mistake. It's been argued that I'd still be living with my daughter today under the same roof if I could have 'kept it together.' But, you and I know what the cost is, don't we? I loved and learned and lost it all, but damn it, I LIVED.

I've been rewriting your manifesto. Not because you got it wrong; but, because it was abbreviated. I'm certain that if you'd lived on past your 30's, you would have filled in all those gaps - not for me, but for yourself. You could have acknowledged your needs, found your courage, accepted yourself unconditionally and discovered you were whole all along. You could have helped me pass on a better legacy to your granddaughter.

Though the words have changed, the spirit of your teachings remains, I think. I just sharpened up those soft edges, mom. 
 

  • Smile only because you must, because joy is bubbling up from inside of you and you may burst. 
     
  • When it hurts figure out why, and if you had any part in the cause, take responsibility. 
     
  • Cry out loud. You've earned it. You're human and being human is excruciating.
     
  • Trust in yourself. There is nothing outside of you that isn't within you.
     
  • Give with a willing heart - or not at all. Take only what you need.
     
  • A mother's love is deep and vast, and self-respecting.
     
  • No one is martyr in their own life.


And, one line of yours still remains branded on my heart... the promise of a long, full life complete with sweetness and sorrow: "This, too, shall pass." (All in good time.) 

Love always,
Sara LeeAnn


P.S. I gave her your name.

To The Person Cringing Because I Refer To Myself As Autistic

I am Sara LeeAnn, and I am autistic. 
I am not a person with autism.
 

Dear person I’ve made cringe by using identify-first language:
 

I respect your viewpoint. I know that words are extremely powerful and carry emotional weight. I realize when you hear me refer to myself as an “autistic adult” rather than saying, “adult with autism” it makes you terribly uncomfortable because it calls into question your own beliefs about autism.

Identity-first language is common within the neurodiverse community. It is called identity-first because autism really just translates to “different neurological wiring one is born with” — like being born Portuguese with green eyes.

 

Autism is an inherent part of my identity, which I fully accept and am learning to celebrate.

 

Some parents of autistic children and many professionals choose to use person-first language such as “individual with ASD” or “person with autism” in order to emphasize that they do not believe autism to be part of a person’s identity, but something afflicting a person, and they wish to emphasize the humanity of the person rather than the disability. While I understand the good intentions behind this choice, and even how it could be considered necessary for professionals communicating with parents of autistic children immediately after diagnosis, it remains a point of contention for me.

You see, my being human is rather obvious, and I am certainly no less human because I was born with unique neurology, so the need to emphasize my humanity seems wildly redundant.

And I am not suffering so much from this neurological difference as from the expectation of society that I function neuro-typically, up to standards developed by neurotypical people, in an environment designed for neurotypical people. It’s true that my perceptions, my experiences of the world and the way I communicate with it are complicated by my autistic brain… but my suffering is directly related to being misunderstood and expected to either a) hide my disabilities entirely, or b) be so obviously disabled that people pardon me for behaving differently.

 

When someone says, “person with autism,” it suggests I can somehow be separated from autism, which is preposterous. I can’t be separated from my neurology anymore than I can be separated from the olive color of my skin, or my broad shoulders or my super-long fingers and toes.

 

Most people who are put off by identity-first language have been exposed to misinformation and myths propagated the world over for decades, so the word “autism” carries a negative connotation for them. Like them, you may feel the need to distance the autistic person from “autism” by using person-first language. But I want you to know that’s not necessary.

I want to personally grant you permission to accept me as I accept myself. 

I understand re-education can be a challenging process, but I think you’ll find there is much to be gained when we all sit awhile with those things that rub us the wrong way. These are the growing pains that mean we’re becoming better versions of ourselves.

I’m Sara LeeAnn, and I am autistic.

I will continue to use identity-first language as my way of affirming my inherent value as an autistic person, as well as to raise awareness that “autism” is not a dirty word. I am wonderfully exactly myself, as I was born to be. Thank you for respecting my identity and my choice.

A Love Letter to My Neurotypical Husband, From Your Autistic Wife

Before you, I knew in my marrow that I would never be suited for a conventional love relationship. How could a woman who exists mostly in her own inner world, so tightly controlled, ever share a life with another person — until “death do us part,” no less? Every attempt I’d ever made at normal had failed miserably. I am too complicated, too particular, too cerebral.

I am much too much of everything. But you don’t seem to mind at all.

When we received my autism diagnosis and I was surprised (but also not at all) and afraid it would change things between us, you smiled and said, “We always knew your mind was something special, sweetheart,” and I relaxed because I knew you meant it in the best possible way.


Thank you for reassuring me that there’s nothing wrong with me. Thank you for loving me with tight squeezes and direct language and morning coffee with one perfect teaspoon of cinnamon. Thank you for parking in the same spot at Target every single time, even though it’s not always convenient. Thank you for listening intently to my monologue about dragonflies.

When I clung to your hand on that busy sidewalk and stopped abruptly, anxious, you said, “I’ve got you, sweetheart,” and you moved me gently around to the other side, away from the street, keeping me close, like it was second nature to you and I was an extension of your body.

Thank you for looking out for me when I’m confused about how to look out for myself. Thank you for rocking me gently while we wait in a long line at the grocery store. Thank you for suggesting I eat, drink water and go outside for some fresh air.  Thank you for reminding me of the sequence of our plans next weekend — no matter how many times I’ve already asked.

When I was angry at myself because I struggle to understand how to be romantic, affectionate and nurturing — the way other women seem to be — you said, “We don’t have to love each other in the same way, sweetheart.” I cried, overwhelmed by the sweet ache in my chest, and unable to find the words to tell you that the way you love me is exactly right and more than I ever dared dream of.

Thank you for making no demands that I pretend to be anything other than I am. Thank you for not taking it personally when I look at you blankly after you’ve made a joke and then ask you to explain why it’s funny. Thank you for watching that moody foreign film with subtitles when you’d maybe rather watch the latest blockbuster.

When I curled into your chest’s concave spot that is just my shape and size, and you wrapped your arms around me, you whispered, “I love you, sweetheart,” into my hair. I said it back, but I don’t think you realize what I mean is that I have found my safe and peaceful space in your heart — my happiest, hope-filled place. And my inner world isn’t just mine anymore. It’s yours, too.

Queen Of The Underworld

An expert from my journal, dated May 10, 2014, just after I became sober and sought help for complex PTSD.
 

I know for certain that I still love cake. My husband says that's something at least - that I can know that. Cake reminds me of all the festive birthday dinners we had at Papa & Gramma's house - my one safe place, where nothing bad ever happened to me. Cake is a good start.

I take an average of three scalding hot baths a day - most every time I get the creepy-crawly feeling in my limbs before I go missing from 'self.' I struggle with this concept. Self. Me. I. In the water, I think of lobsters boiling on the stove and the hissing scream of steam escaping the pot. The screams I couldn't scream. I feel my skin burn, therefore I am my skin. That's right, isn't it?

My daughter is so pretty. I marvel at her perfect innocence as she does the splits in her summer dress. I am smiling, because I am so happy, of course. But. I reach up to swipe at my cheeks now wet with tears.

The mirror is a spectacular joke. I laugh at the girl and she laughs back with my mouth. I put lipstick on it. In a years' time, I've incrementally ridden myself of my hair and the products in my make-up bag in order to limit our disconcerting visits.  She is such a peculiar one, and I don't know what to make of her.

I can't pretend I am who I was, so my 'friends' are becoming fewer. But, it could be argued I don't have friends and never did, because I've never shared the real me with anyone until now. I am lonely, but not for company; rather, the cozy illusion of identity.



I share very little of my'self' anymore.  I'm the Queen of the Underworld now, on a heroine's journey. I'm descending deeper into the dark and twisty spaces of memory, vanquishing the demons, the ghosts, the succubi and the soul-vampires feeding still on my unconscious.



I often use third person narrative to direct my activities when I have to leave the house. "She walks purposefully through the parking lot. She needs toothpaste and that's all. She is not anxious. She is not anxious. She is not anxious." I trace the word 'anxious' in cursive in my pocket.

Sometimes I lose time. 5:36 p.m. 8:24 p.m. 11:20 p.m.

Bryan asks, "Did you eat today?"
I don't remember. "I...I'm sure I did." What is today? What time is it, anyway?

At work, a man touches the inside of my leg, and although I mostly behave coolly, calmly, collectedly, I am triggered. Here comes the numb. At home, the pictures and books and lamps look like frosted glass. I wonder if I will shatter. Days goes by. I throw a lamp. It shatters.

I wake at night between nightmares which become flashbacks, and I claw at the collar, choke on the memory. It tastes something like anguish.

The  liars, thieves and cowards cannot deter me from my truth. The fog and fear may disorient me, but g*ddamn it, I know what I know. I will write it, weep it, scald it, shatter it, give it a name. I will make love to my trauma, and in the stunning afterglow I will set it on fire... say a cremation prayer... and in glorious celebration, eat cake.

A Journey of Courage and Cock-Ups

Journeys of the soul have a way of getting you exactly where you didn't want to go, and didn't know you were headed all along. Some journeys are plotted and planned, provisions packed and let's-go-we're-ready-for-anything; but, I think the most memorable ones are often full of folly and courage.

I started my first blog in 2007 as a way to keep my family in California up-to-date with the goings on in my new life in Wyoming. My blog was called The Bunnycage. I named it such because when I was a child growing up in rural California, the bunny cages behind our house were my own haven. I would go there to think and get lost in daydreams. I posted photographs I took with my new camera and wrote about the joys of mothering a perfect child in my perfect little house with my perfect husband. In other words, I kept up the appearance of perfect. Because I wrote nothing of my hidden struggles and silent pain.

Over the course of the next year, I began to acknowledge that all the pretending to be perfect was making even more sick and tired, and once I got sick and tired of being so sick and tired, I started questioning  my ability to keep up the charade. I began writing the thoughts I didn't dare speak. I began painting my emotions with watercolor, coffee, wine, anything I could color pages with; and, finally, I discovered self-portraiture.
 

There were shards of piercing poetry, stained pages and pictures of a lost little girl all grown up - but not at all - still searching for a haven. 
 

In 2010, divorced, the non-custodial parent of my only child, I realized I'd accidentally started a viable photography 'business.' Photographing women in their vulnerability somehow made me see my own - and see my strength, too. As much as they said I was changing their lives, showing them their beauty and power... I felt then like I wouldn't survive my own loss, my own life, if it weren't for them. Those women forever changed me.

The business operated for a few years, but I was so much better at mentoring and photographing than I was at selling. My soul was in the why. I could never quite get passed all that was necessary for the how. The "how to" monetize what I did out of absolute necessity: my own quest for self-discovery and acceptance fully realized through helping other women on their own journeys.

F*ck selling, the filthy commodification of my soul's stirring. So, one day, I just quit. Quit blogging, quit photographing, quit sharing my inspirational quotes and empowering images. I even quit Facebook for 6 months, which everyone knows is the same thing as social suicide; except I hated socializing. In fact, I hated most of what I'd built. When did that happen? How...?
 

So, all at once, just like that, I assassinated the virtual Sara LeeAnn persona I had so carefully crafted.
 

That girl was a caricature of herself. She didn't know it, but she was better than fake smiles, exclamation marks and "xo" signatures in lipstick. She had to die. To make room for me.

I became the Queen of the Underworld - my own, inner world wherein my shadow self was buried. I was Persephone. Motherless daughter, childless, devoid of spring, bound to the dark. I had never journeyed so far inside before. In fact, I'd spent most of my life avoiding this trip. Inside, I found that the dark was darker than black and the black was blacker than void. I could make only tiny, shuffling steps with my arms outstretched, feeling my way toward the center. Where was I? My voice echoed and fell for miles down the rabbit hole as I called out to myself for saving. It was a year of winter and dreamtime and waning moons and goodbyes.

I got rid of most of my possessions, limited my wardrobe to 30 or so things, shaved my head, threw away my make-up, stopped eating meat and animal products, quit drinking, and gave up my internal fight to be a more conventional person, woman, wife and mother. And, at first it seemed that I was stopping, quitting, giving up and throwing out an awful lot.
 

It seemed that in stripping myself bare, I would be left with nothing; but, that wasn't the case.
 

Suddenly, I was awake. My choices were conscious ones. I committed to an authentic, simple, courageous and compassionate life. I was now rejoicing in living with less, reveling in my silver hair growing in, enjoying a clean body and a clear head. I was telling secrets and banishing shame. I was embracing what I learned was (rather, obviously, after all) my autistic brain. I finally began accepting myself wholly.

But still, after all this good work at becoming more real, I faltered when it came to sharing the depth of breadth of it with anyone other than my husband. When I re-joined Facebook and started sharing stories again my inclination was to do what I know all to well how to do: To pass. To appeal to the masses. To fake it to make it.  

You know, what I've always done, what so many of us always do.

We instinctively hide our real selves behind a mask, robbing ourselves and others of the gifts only we can bring to the world. We do this to protect our soft underbellies from those who mean us harm or who might be careless with us.


We do this to maintain our illusions of self, so meticulously constructed. We do this for fear others will reject us, for fear the world won't want what we yearn to give. We do this because we think maybe we can't handle our own truth. The facade is easier, isn't it? A lifetime of mimicking people in order to survive, of watering down our strong flavor so it doesn't burn going down, we act a part without even thinking. We will do anything to avoid the vulnerability of being truly ourselves.

I've been afraid. Just like you, I've been badly wounded by people and experiences and sheer cock-ups of my own. More painfully, I've wounded others and wrestled with the shame of it.
 

I don't have everything figured out. I'm ever-evolving, seeking and synthesizing. For me, that's the greatest gift of life. That each of us can can take the years, the decades of conditioning that shaped our identities, and awaken to a new interpretation of who we are. We can see ourselves as whole. We can choose to live fully conscious, purposeful lives rich with meaning. So long as we are alive, we can decide to create the lives we're worthy of.

My intention is that someday when my daughter is grown, she will say of me, "My mom never took the easy way out. She lived her truth and helped people live theirs." 

What's your intention for you?

This Blog May Not Be For You

This blog may not be for you if you dislike reading about things that aren't always pretty and always happy. Or you just don't like my style of writing. Or you don't like me. But it's definitely not for you if you are already dead.

 

“Boring damned people. All over the earth.
Propagating more boring damned people.
What a horror show. The earth swarmed with them.”

- Charles Bukowski   

 

There Is A Good Chance You Are Already Dead If:
 

You read the quote above and felt instantly indignant.

You are content with eating, sleeping and shitting between time-card punches, the treadmill and complaining to your friends about the latest tragedy of your home remodel.

You just called me a b*tch in your head.

You buy things and have entire conversations about the things you bought.

You are afraid of the dark, not realizing you are made of it and it is good, and you can light a spark anytime and create the fire that will become your best, most brilliant life.

You just clicked away and went to pour yourself another 8 ounces of white wine and watch television.


You see homeless, disabled, mentally ill and think of them only as homeless, disabled and mentally ill and otherwise "other" than you. Before you avert your eyes and pay for your Triple Grande Skinny Vanilla Latte.


You aren't curious or seeking or growing or becoming or being, but you entertain yourself judging those who are.

You curse your laugh lines, your crows feet, your 'extra' 10 or 20 or 50 lbs. of flesh, desperate to erase any sign that you've lived in your body at all. You are unaware that the only real ugly in you is your committed ignorance about what beauty really is.

You curse your depression, your anxiety, your general dis-ease and distract yourself with something, anything, before the truth of that little voice inside dares talk some sense into you to slow down, to pay attention, to respect your limitations, to be humbled and show compassion to yourself so that you may learn to show compassion for others.

Your children are miniature versions of you, and when they aren't, you tell them to "be quiet," "sit down," and "can't you just-?!"

You have forgotten what it felt like to spin with your arms outstretched, head thrown back, laughing, barefoot in the grass, and fall back with complete trust the ground would still be there to catch you.

Your friends all look, act and think exactly like you, and you take vacations together to Sandals Resorts and Las Vegas, and the men talk about their trucks and the women talk about their new carpet, and you come back on Sunday and start planning your next vacation from your life.

You don't see anything even vaguely ironic about what you just read.

You say "I've just been so busy," and don't realize the direct translation is, "I am oblivious to the fact that my schedule reflects my choices."

If you're still reading this, there's a chance you don't want to be dead. You want to live. You're in the right place and in good company because I used to be dead, too.  Most of us die a dozen deaths while we're breathing, but some of us are fortunate to stumble on someone or something that resuscitates us before it's really too late.

Welcome back. May you now become fully conscious and begin to consciously design a rich and meaningful life. 

Massage Is Relaxing. Except When It's Not.

I was acutely aware of the loud tick-tick-tick-tick rhythm of the plastic clock on the wall behind me and the way it tilted slightly to the right so that the 12 was where the 1 ought to be. Even though I faced the other direction, I could feel the clock all cock-eyed behind my back, taunting me. 'How am I supposed to relax in here?' Exasperated, I lifted up on my elbows on the massage table and peered over my shoulder at it.

I can't do this. I looked back at the door. Then behind me again at the offensive clock.

Tick-tick-tick-tick-

I should straighten it. Smash it. No, just straighten it. Just a little.

Tick-tick-tick-tick-tick-

I lay back down and press my face hard into the head rest. Will I have enough time to get up, straighten the clock, and then get back under the sheet before the massage therapist re-enters?

Sara. Calm down.

Tick-tick-tick-tick-tick-tick-

Sara! You're going to have a massage! Bryan surprised you with this massage and he said to enjoy it. Focus on something else.

I take a shaky breath, close my eyes and wedge my face back into the donut. Eyes pop open. Is it a thing that all massage rooms be painted Sanitarium Green? There is a thick film of dirt and hair on the baseboards and a remnant of tissue by the wastebasket. So gross. So, so gross.

Stoooooooop it right now.

Can't. Have to pick up that tissue fragment. I hop down from the table just as the massage therapist knocks softly on the other side of the door.

"Just a minute!" My free boobs painfully knock into each other as I lunge for the tissue fragment and toss it in the bin. I dart to the clock, quickly straighten the cheap fucker, then awkwardly climb back atop the table.
"Okay, I'm ready!"

The massage therapist enters quietly and lowers the lights. Which she should have done before she left me in here. So that whole tissue thing wouldn't have happened. I notice that she is of Asian descent with delicate features, wearing oatmeal scrubs and fuschia lipstick. Very fuschia lipstick.

I clamp my eyes shut and face plant into the head rest. I practice impersonating a normal person lounging on a massage table, 100% relaxed and ready to enjoy being touched by a veritable stranger in an untidy room with a clock askew. I am very near tears. Or laughter. I haven't decided yet. I sometimes cry or laugh when I am overwhelmed. That's generally the only time I cry, but I also laugh at terrible puns and any time I see a goat. 

What am I doing here? Stupid Bryan. I hate people. And being touched. And rooms with clocks.


Fuchsia says, "We do Swedish massage today. Tell me if you don't like." (I am calling her Fuschia, but not disrespectfully; rather, because she didn't offer her name, and her license was not displayed prominently on any of the interior walls. This is not my fault.)

"I don't like - um. I need Deep Tissue. I can't have light touches. Please use constant pressure." Did I say please? I think I said please. I can't remember. Oh my god, if she starts doing a Swedish massage I will actually freak out. "Deep Tissue, please. Thank you very much."

Fuchsia's toenails are unpolished, which I like. I can see how clean her nails are. That is encouraging and somehow counters the dirty baseboards. She asks permission to massage my head, which I also like. Permission granted. She is quite skilled and plenty strong, and in less than 10 minutes I have relaxed enough to stop fixating on the ticking clock and her lipstick.

She says, "Too much?" 

"No, it's perfect. Thank you." I immediately admonish myself for using the word perfect. Once you say something is perfect you've implied there is no room for improvement, haven't you? I'm screwed now, of course. She will put no further effort into impressing me now that I've gone and said that. This is totally my fault.

I was right, of course. Oatmeal's near-perfect pressure became less and less, especially as she moved down to my lower back, legs and feet. Having been a massage therapist myself for a time, I understood how tiring and tiresome the last 15 or so minutes of a 1-hour massage can be. But, still. People's standards are truly disappointing.

I'm bored and I want her to stop with the foot tickling now. How many more minutes?

Tick-tick-tick-tick-5-6-7-8...

I endure the last however-long by singing Fleetwood Mac's Dreams in my head - complete with Stevie Nick's backup harmony - and then composing a letter to the National Certification Board of Therapeutic Massage and Bodywork requesting the immediate banning of clocks in massage rooms. I think about including the lipstick thing, but decide against it on the basis that it is discriminatory.

It's over.

After my satisfactory 1/2 Deep Tissue massage, I dress, straighten my hair, thank Fuschia and find Bryan waiting for me in the car, smiling sweetly. "How was it, sweetheart?"

I carefully match his smile and tone. "Good. It was really good. Thank you, love."

We drive home hand-in-hand, Bryan very pleased. I look out the window and get to work composing an internal addendum to my letter to the NCBTMB, requesting a ban on massage gift certificates.

 

In Which I F*ck What We Do For A Living

(Figuratively speaking.)

I try to avoid meeting new people whenever possible, because solitude is best for my health; but, sometimes it just can't be helped. After the hello and handshake, the inevitable question looms and I brace myself hard, but still bristle when asked, "What do you do?" <Insert long pause and fumbling whilst I try to impart a bit of perspective in a more tactful way than I'm about to.>

I always, always want to launch into the following diatribe - but I don't because my husband would be embarrassed. (As bemused and intrigued as he is by the workings of my brain, he does have his limits.)

Diatribe Commencing in 5.....4....3...2..1.

F*ck this preoccupation with occupation. F*ck the glorification of busy. F*ck the overly simplistic definition of 'successful.' F*ck the promotion of being goal-focused, achievement-oriented, prestige-seeking, reward-motivated and wealth-accumulating once and for all.

F*ck what we DO for a living. Let's share instead what we LIVE for.

You are worthy of existing just by virtue of being. Read that again. You are inherently worthy - even if you aren't ticking tasks off, cashing checks, spending and patting yourself and others on the back for being good, little workers/consumers. You are worthy no matter what your job status or dollar value. Your life doesn't gain meaning as you gain accolades and promotions and more square footage.

When they told you to stop playing and get to work; and, money makes the world go 'round; and, this is just the way it's done; and, that's what the weekends are for, they did you a great disservice. Because the lies sunk in deep. You became convinced that being a grown-up meant  swallowing your truth and extinguishing your fire... all because they were petrified you would burn everything to the ground and make living art from the ashes.

I'm not selling anything.
I'm holding up a mirror.
Look. It's you.

Mercy, you are magnificent. You are ferocious and vulnerable and limitless. You are worthy of living a life of purpose and passion. You are allowed to be excited about your life and to share your excitement for the simple joy of life - without shame. If you don't know your purpose and passion, you are allowed to sit for hours and meditate on it and/or go out and explore the crazy-beautiful world until you discover it. You don't owe anyone anything. You don't have to apologize for yourself. You don't need to justify how you choose to live this one, precious life that belongs to you. You need only to be.

Close your Evernote and draw highlighter rainbows all over your desk calendar. Take a way-too-long nap, kiss him breathless, linger at the dinner table and leave the dishes there for the cats, wake up your babies at midnight to howl at the moon, make something with your own two hands, turn your television into a dartboard, eat real food you prepare with loving gratitude, and walk away from whatever doesn't serve you and never say goodbye or look back.

And next time someone asks you "what do you do?" smile all the way through to your insides and say, "I live."

100 Things: A List To Live By For My Daughter, My Inner Child & Yours

My mother died tragically of overdose when I was 20 years old. Five years later, I gave birth to my only daughter.

Both experiences were startlingly (and paradoxically) similar, as they each required more of me than I felt entirely capable of; shook my concept of self to its core; and left me raw, vulnerable and seeking clarity in my new identity.

Fast forward 10 years to a time I spent living half of a life, empty and heartsick after losing my little girl — the collateral damage of divorce. Fast forward five years more to this day, when I recognize these losses as sacred gifts. My greatest catalysts for growth.

Living as a motherless daughter, a daughterless mother, taught me everything my own inner child needed to know. Everything she never realized she knew all along.

 

100 Things: A List To Live By For My Daughter, My Inner Child, And Yours

 

1.  Don’t knock it ’til you try it.

2.  Send Thank You cards for every act of hospitality — except another Thank You card.

3.  Travel light through life. Keep only what you need.

4.  Put cinnamon in your coffee, and twice as much when you miss me.

5.  It’s okay to cry when you’re hurt. It’s also okay to smash things; but, wash your face, clean your mess, and get up off the floor when you’re done. You don’t belong down there.

6.  If you’re going to curse, be clever. If you’re going to curse in public, know your audience.

7.  Seek out the people and places that resonate with your soul.

8.  Just because you can doesn’t mean you should.

9.  5-second rule. It’s just dirt. There are worse things in a fast food cheeseburger.

10.  Happiness is not a permanent state. Wholeness is. Don’t confuse these.

11.  If you’re staying more than one night, unpack your bag.

12.  Never walk through an alley.

13.  Be less sugar, more spice, and only as nice as you’re able to without compromising yourself.

14.  Can’t is a cop-out. Don’t want to is perfectly acceptable.

15.  Hold your heroes to a high standard. Be your own hero.

16.  If you can’t smile with your eyes, don’t smile. Insincerity is nothing to aspire to.

17.  Never lie to yourself.

18.  Don’t bring a knife to a gunfight.

19.  Your body, your rules.

20.  If you have an opinion, you better know why.

21.  Study your curiosities and practice your passions.

22.  Ask for what you want.

23.  Wish on stars and dandelions, then get to work.

24.  Don’t skimp on good sheets.

25.  Fall in love often. Particularly with ideas, art, music, literature, food and far-off places.

26.  Fall hard and forever in love with nothing but yourself.

27.  Say PleaseThank You, and Pardon Me, whenever the situation warrants it.

28.  Reserve I’m sorry for when you truly are.

29.  Naps are for grown-ups, too.

30.  Question everything except your own intuition.

31.  Create.

32.  You have enough. You are enough.

33.  It’s never too late to make amends.

34.  Respect the earth. Respect its inhabitants.

35.  Use your blinker, not your horn.

36.  Magnify your strengths and accept your shortcomings.

37.  Marriage is a contract. Love is a gift.

38.  Belong. To yourself.

39.  Under no circumstances should you ask a woman if she’s pregnant.

40.  Think solutions, not problems.

41.  Learn to laugh at yourself.

42.  Animals die. We are all animals.

43.  Death is natural and is not the enemy.

44.  The enemy is stagnation.

45.  Invest in your hobbies.

46.  This, too, shall pass. The bad and the good. Nothing is permanent. Relax into this knowledge, accept and rejoice in it.

47.  Always ignore the camera.

48.  Never toot your own horn except in a job interview.

49.  Give credit. Accept blame.

50.  Keep a bottle of champagne in the ice box. Celebrate the sweet stuff. And Tuesdays.

51.  Do all you do with a willing heart, or not at all.

52.  Buy fresh flowers for your apartment every week.

53.  Be afraid. Do it anyway.

54.  Rescue stray animals. Do not rescue people.

55.  If you’ve made your point, stop talking.

56.  Eat until you’re satiated. Then stop.

57.  Move your body for the sheer joy of it.

58.  Look people in the eye when you thank them.

59.  Use cloth napkins and pretty china, especially when you’re eating alone.

60.  Never, ever answer the phone at the dinner table.

61.  Forgive yourself for your mistakes.

62.  Wear bloomers underneath your A-line skirts. You never know when you might want to do a cartwheel.

63.  Tattoos are art. Except when they’re not. Know the difference.

64.  Learn how to nourish yourself — inside and out.

65.  A woman is no less a woman when she isn’t being ladylike.

66.  Love is no respecter of gender, age, race or socioeconomic status. Love true. Love well.

67.  Make your bed every day, first thing — except on Sundays. Sundays are for languor.

68.  Sex is not a bad word.

69.  Fuck is not a bad word either. Words are given life by intention. Remember that.

70.  Spend time alone. Cultivate your relationship with You.

71.  If you don’t understand, ask. If you still don’t understand, research.

72.  Don’t lose your cool. Especially at work.

73.  Education is life. Live and learn.

74.  People will show you who they are. Pay attention.

75.  Keep your word or keep your mouth closed.

76.  Read poetry. Write poetry — even just a phrase. We are living poems, all of us.

77.  Respecting authority isn’t synonymous with obeying authority.

78.  Red lipstick looks lovely on a fresh complexion. It looks lovelier as a love note on the bathroom mirror.

79.  Get up and try again. And again. And again.

80.  Get lost in nature, in antique stores, in used bookshops and in your dreams.

81.  You will show others how to treat you by how you treat yourself.

82.  It’s perfectly acceptable to pay someone to change your tire and your oil, as long as you know how to do it yourself.

83.  Be kind. Everyone has a hard fight ahead of them.

84.  Words are powerful. Speak them with good purpose.

85.  Read more books.

86.  It doesn’t matter whether you can carry a tune. Sing. But if you are going to sing out loud, do the artist a courtesy and know the lyrics.

87.  You won’t always be the strongest or the fastest. But you can be the toughest.

88.  If you need more closet space, you have too many things. Period.

89.  Don’t label other women slut, bitch, or any derogatory term. They are your sisters.

90.  Dance naked beneath the stars. It’s best to do this in the middle of nowhere as opposed to downtown.

91.  Always wear a bra. At work.

92.  Learn healthy coping mechanisms, like solo dance parties.

93.  Bring enough to share with everyone.

94.  Give what you most need.

95.  Sun, sand and the sea. It’s in your blood as much as these mountains and trees.

96.  If you have to fight, punch first and punch hard.

97.  Give to the needy. You will be in need one day and The Universe will give back to you.

98.  If it’s not on this list, look inside yourself and you will know.

99.  You’re never too old to need your mom.

100.  Your mom won’t always be there, but will always be part of who are and are becoming. She loves you all the way up to the moon.

 

I can’t dry my mother’s infinite tears or stop her from swallowing those pills, any more than I can protect my daughter from all the cruelties of this world… but, I honor them both by living. Living by heart, living as art, wide-open and out loud, sharpened by pain and softened again in peace.

Love your losses. They have so much to teach.