Note: I’ve been writing this for most of the day, and finally finished a first draft. I copied and pasted it into 3HoursPast, with the intention of whittling this down for word count and possibly for content, to do my usual corrections of verb tenses and pronouns. After I posted this into the blog form, I accidentally hit “publish” instead of “save draft.” That published my post to your inboxes and feeds. So instead of whittling and polishing as I meant to do, I decided to add a few links and publish as-is. Thank you for stopping by, it’s been too long.
It’s been nearly two years since I posted here with regularity, and I still miss you. This post is not really about sewing, or Cake, or patchwork pillows. This post is the removal of a mask I’ve outgrown, moving past a persona I don’t want to use anymore to share the human being I am. It’s messy, long, probably sharing too much and may be upsetting to some, but I think it’s important to write this for anyone out there who lives trapped in the kind of life I was living. It doesn’t have to be that way. And I’d like to share where I’ve been and what I’ve learned while I was gone.
Last July, I was diagnosed with Asperger’s Syndrome. The DSM manual (used to diagnose mental illnesses) chose to remove “Aspergers” in the latest edition because it is named after a person, replacing it with “Autism Spectrum Level 1, no delay in speech or intellectual development.” I tend to refer to myself as an “Aspie.” Semantics aside, this diagnosis was a blessed relief, pointing me towards a community where I could contribute, grow, and be myself, giving me tools to better understand and manage my condition (instead of my shots-in-the-dark approach), and making me feel for the first time ever like I deserved to be well and happy in my life. I quit fearing “The Thing,” and dropped 29 years of resentment about being different- I felt fifty pounds lighter. I decided I didn’t want to die, after all. Perhaps my family would indeed be better off if I were here with them.
The diagnosis was the clearest-cut “end and a beginning” I’ve ever experienced in my life- more powerful than leaving my birth family as a teen, more than going to college or immigrating to the other side of the world, and more than becoming a wife, then a mother. Before last May, I had no idea that Aspergers could be expressed in any kind of person, not just in math-genius little boys who line up the train sets and beat their heads on the wall. I wish I’d known differently sooner. Let me back up and explain how I got to Aspergers. You were here, too, for part of it. You saw the outside, but let me explain the inside.
Two years ago, sometime after the Hummingbird release, I started “glitching” worse than usual. This was my private term for noticing when my perceptions of the world around me were either illogical or impossible, or when my mind goes blank. I was retaining very little information spoken to me, sometimes not even hearing it. This has always been something of a problem that I’d learned to compensate for, but my strategies were not working. When I sat to write a blog post, I felt deeply confused, lost in a sea of links and pages and photo files and swimming words. I started to make more mistakes, and to get nauseous headaches while sitting in front of the screen. I told myself I was tired, worn out, I’d rest after I got the next collection out and everything would be fine. I had less and less patience or time for my family, desperately trying to make Cake into what I knew it could be, failing, and also failing my husband and daughter.
Then one day as I rode the bus, a cyclist pulled up beside my window at a stop. To my utter shock, I looked into the face of my father when I glanced over. I sat there staring, going through my mindfulness/reality checks, expecting his face to melt into the face of a random dude as I brought awareness to my breath and carefully took in my surroundings. Instead, I picked out the particular line of my father’s jaw, the stormy blue eyes, the shape of his hairline, a scar on his hand, the shape of his fingernails. It scared me because even as I looked at him I knew it wasn’t real. As I pulled away, I knew it couldn’t be my father, aged ~32. He’s old now, living on the other side of the planet. After that, I went in for yet another round of psychiatric assessment.
I’ve spent years in and out of psych offices, primarily for PTSD treatment. This time, I very calmly told the doctor that I was hallucinating and needed to be checked. For me, hallucinations were always a Code Red- do not mess around, go talk to someone asap. I always felt my hold on what we call reality was less than firm, and had been vigilant about “imaginary friends” since late adolescence. I told the doctor my history of trauma, and answered a lot of questions about my current lifestyle, family life, and work. The doctor eventually cleared me of PTSD, saying my hallucination was possibly a PTSD after effect triggered by stress, and I should rest. He also cleared me of Bipolar disorder, which was nice. I’ve been called “bipolar” by plenty of people, and even wondered myself if that was The Thing, if one day I’d have to commit to mood medication in order to function. I definitely have soaring heights of productivity and blank times of nothingness, but I’m not Bipolar.
I got back to work and tried to rest more, though that quickly went by the wayside. I gave up trying to blog here on a regular basis, because assembling blog posts had become a laborious, painful grind. We started the Red Velvet Collection presale right about the time my attacks started. I’d wake up in the middle of the night, feeling like a burning dagger was being driven between my shoulder blades. I’d gasp, and writhe, and get out of bed so I didn’t wake up my husband, then lie on the couch, waiting for the Panadol to kick in. It took the edge off the pain so I could sleep. At first, these attacks were once a week and in the middle of the night. They became more frequent, sneaking up on me after lunch while I sat writing tutorials, sometimes circling my body. I thought they might be another one of those stress reactions, and I tried to ignore them, hide it, and get on with life.
By the time we were shipping Red Velvet dress patterns, I was having around 4 attacks a week. I was also doing too much. I remember putting together those shipments in a blind haze, with that burning dagger between my shoulder blades while I tried to plan my in-real-life shows and the Sewalong. I stopped eating much, wasn’t sleeping, and had a pregnancy scare when I stopped menstruating. I was ignoring my husband, and spending little time with my daughter. Worse, as the weeks wore on I felt my Reason fleeing me. It wasn’t the first time, but I thought I’d grown up enough and worked hard enough and changed enough with a stable enough lifestyle that my Reason wouldn’t do that anymore. I felt my ability to make sentences, to communicate, to think in an orderly way, to cook dinner or even clean up the bathroom was fading away into the black confusion I felt as a child. The house fell into a mess which amped up my anxiety. It was terrifying, and I felt like I was watching it happen from outside my body. I’m sick, I told myself, I’m really sick and when I’m well it will be ok.
I went back to the physician, I was having 5-6 attacks a week at any time of the day. She said I had reflux, and gave me medicine. I might as well have swallowed sticks of sidewalk chalk for all the good it did. I went back, got stronger medicine that also did nothing. Everyone around me was saying “Reflux this” and “Reflux that,” giving me well-meaning advice based on their own experiences. I tried it all and nothing worked. Besides, I had reflux during pregnancy and I knew this wasn’t the same thing. My body and mind were literally falling apart and fading away, and no one could help me even when I asked for it. I felt angry, a sort of rage I hadn’t felt since I was a kid, and I mostly turned it against myself for being so “useless” and not getting my work done. I kept taking the pills and suffering as privately as I could for two months. The attacks worsened in frequency. and around the holidays, I quit being able to eat at all without it coming back up during an attack, often running from the table to throw up.
Finally, I had an attack that lasted four days. I spent most of that time in bed or in a hot shower or with my head in the toilet. The pain and nausea wouldn’t go away, so we dragged me back to the doctor who grudgingly sent me to have an ultrasound. She thought I was malingering. The technician checked me for ectopic pregnancy, then scanned all of my organs for signs of damage. The good news was everything except my gallbladder was fine. The bad news was, I had a gallbladder packed with stones and needed immediate surgery. I was really out of it, and by then I was so terrified of myself and my new inability to make sense of the world around me that I tried to just stay inside myself. I hate being hospitalized, too- needles make me woozy or faint, blood and guts talk does the same, I dislike being touched, I dislike strangers and always react very badly after being put under. The morphine was nice, though.
They let me go after 3-4 days, I really don’t remember my time in the hospital that clearly except the emails from my aunt in Texas. She’d taken me in when I was a teen and was like a mother to me. Her emails helped me hold everything together while I was stuck in the cold, bright, sterile hospital hooked up to machines that put fluids into my body and took them back out again. I must have worn her out, I know I wasn’t in a fit state of mind to communicate with humanity at that time. When I got home, everything was worse. I couldn’t do anything except lie on my back and binge-watch TV shows. Meanwhile, I still had two designs out on pre-sale from the RV collection and they preyed on my mind. I got heaps of messages and questions- rightly so, and it was maddening to be able to do exactly nothing about it even though the work was nearly complete. I swore to myself I’d never, ever ever pre-sale anything ever again.
About five days after the surgery, I woke up one morning completely black. I fought it at first, as I always fight when I wake up that way, because the blackness causes destruction if it takes over, and I know if I weathered it quietly, it would pass. But I was weak. I was tired. Everything hurt. I couldn’t fight and it took over. Everything around me in our little house seemed like a reminder of a personal failure, even our wedding photos covering one wall mocked me. I was really happy on that day, to be marrying my best friend. But I was also really overwhelmed by all the well-meaning strangers in my husbands’ family trying to talk to me, by the expectations everyone places on a wedding and what a bride should act like, and wishing I had my best girlfriend there to help me with it all. By the time we were taking pictures, my face was doing the weird face thing it does and later I was accused of purposefully ruining the photos. The ones on my walls were beautiful candids my sister in law took of us happily playing together on the beach in our wedding clothes, no faces. I liked those photos, to me they seemed a perfect representation of our relationship. But that morning, I couldn’t bear to look at them for one more second.
After my daughter went to school, I ripped them all down and smashed them into bits, trying to smash away the painful memory of how I “ruined” my own wedding by being weird. It wasn’t enough. I howled and sobbed and screamed, but it still wasn’t enough to quench the blackness. It was like fire in my veins, an aching hollowness inside, a poison- remembering every time I’ve done the weird thing or the wrong thing or a stupid thing and every time someone had mocked me for acting weird or using big words, and not understanding why I’m this way. My husband came home sometime in the middle of this and I told him I’d like to die, that I was sick of living this way and I hated my life, but I didn’t know what to do about it. He talked me down (it’s hard to sustain that level of emotion when you haven’t eaten solid food for weeks) and put me to bed. Later, my aunt and uncle in Texas Skyped me and I tried to explain these things, but I was falling asleep from the effort of all that rage. Later, they told me I seemed drunk (I wasn’t on anything). When they suggested I go get some “help,” I could have laughed if I had the energy. I thought-I’ve been seeking help my whole life, and it had not helped this weird problem. There’s no help for someone like me, I thought, I really should just go die somewhere and leave everyone else in peace. I said no, they can’t help me. Then my aunt told me to grow up and I did laugh. As if I knew what that meant, as if I wouldn’t have already done it if I knew what that meant.
Later that night, I was still black, but limp. Spent. I wanted to cease living, I wanted my husband to feel the same level of hopelessness and fear I felt. As if spreading around the negativity makes it easier to handle. (Pro tip: it makes everything worse for everyone.) I started talking about all the ways I could never commit suicide. I listed off method after method that was handy without leaving the house, and then started listing off ways that would be better because they’d look like accidents but were still unsuitable in one way or the other. I told him what to do after I was gone, how to look after our girl. I couldn’t stop, I couldn’t help myself, but I was also calm and quiet and lying in bed when my husband had enough. He went and called the men in white coats to take me away. As if in a dream, I got dressed and threw my wedding rings at him. I stood outside to wait, because I didn’t want to wake our girl. The men in white coats turned out to be EMTs in an ambulance who told me I could come “voluntarily,” or they could physically restrain me. I said I preferred not to go at all and they were wasting their time. For half a minute, I considered simply running. I couldn’t run as fast as those men, but I knew I could easily hide in the neighbourhood I knew like the back of my hand. But one of the EMTs looked like my cousin who had been a brother to me, tall and pale with red hair and brown eyes, the same bony look and soft demeanour. I let him put me into the ambulance. We pulled away and as I quietly refused while passively allowing blood pressure and temperature checks, I thought “I always knew things would end this way.”
Being committed was literally my worst fear come to life. Some children fear the boogeyman or aliens or monsters, but I was always terrified of being committed. I’d heard stories in my childhood about my father’s aunt being locked away for decades, but all I ever really understood about her was that she was “off” and “weird.” Weird like me, perhaps. My father taught me ways of hiding the weirdness when I was a kid, lest I end up locked away as well I suppose. I was always, always the most afraid of that. In the mental wing of the hospital, I found myself locked in a bright, cold waiting room with a man three times my size who was pacing and muttering. Later I found out he was schizophrenic and off his meds, picked up for raving and being violent.
A nurse tried to make me take Valium, which I refused, requesting a panadol and showing them my torso that was still bandaged. It took hours to get it, but they kept trying to push that Valium on me while I sat there quietly seething. One nurse came to try to persuade me and said I was suicidal. I said I was not suicidal, I simply wanted to cease living. The distinction was lost on him. I’ll never forget the way he cradled the Valium in his palm and leaned toward me quietly saying that next time, I should “Take more care. Take more care.” I felt like he was telling me to just kill myself and be done with it, but perhaps he meant not telling anyone around me how I was feeling. Neither sentiment seemed appropriate to me coming out of the mouth of a mental health professional. The night wore on and they gave me a bed to sleep on because of my condition. As the door shut behind me in my little cell, I gave up being reasonable and screamed and cried until I was spent. Then I got up and found a room where some people were watching World War Z with glazed eyes. I sat there too, and saw a very large woman carried past me, bleeding and screaming. She’d tried to cut her wrists on the bathroom fixtures. That’s suicidal, I thought.
I talked to a doctor the next day who agreed with me that I should go home. I was angry, very angry at being placed there. My husband took his time coming to pick me up, and said he’d been talking to my doctor, giving me an account of my doctor’s conversation that didn’t seem to match with what I had just experienced. I knew I was glitching, maybe I’d missed something, and I could barely stand the sight of him, so I let it go without arguing much. Besides, I’d been up all night. I still think it was wrong for my doctor to talk to him that way, I felt very threatened and like everyone around me was actively trying to make me crazy. I guess crazy is easier to understand, easier to write off. He took me home and almost immediately, I left to go stay with a friend. My husband said he’d not known what to do, that my aunt told him to call the mental health professionals if I got suicidal. I guess they don’t understand the difference between wanting to die and wanting to murder oneself, either.
I gathered the shreds of energy I had left to call my aunt and let her have it. I felt like she should see the after effects of the “help” I was supposed to have gotten. I know she has an aversion to foul language and loud noises, I know they short circuit her system. I got her on Skype and let loose with the loudest account of my night that I could muster, using the most colourful expletives I could summon. I saw her “shorting out” through the screen, and continued to unload on her. Just before she shut the computer, she said I was lying (not so much, everything I said was true). I wasn’t finished with her, and took to email to tell her precisely what I thought of her conservative world-view that she pushed on me and her church filled with dead-eyed hypocrites. That wasn’t quite fair, really, because I know her faith and my uncle’s faith is true, but I knew it would hurt her at least as much as I was hurting. She’s barely spoken to me since, except in a 20-odd page hand-written letter I only read much later. If I’d read it when she wrote it, I would have gone ahead and just jumped off a cliff. The not-speaking-to-me is a thing she’s always done (and denied doing) with me when she decides I cross a line, the first time it was devastating, the second time it was heart-breaking, the third time gave me pause, but this time felt more like a weight off. I still miss her, and love her, and kind of wish I hadn’t screamed my message, and I do talk to my uncle.
Eventually I went home, and submitted to yet another round of counselling with a clinician who has helped me make positive changes in the past. I finished the last two Red Velvet designs and put them into the shop with very little zest or fanfare. I felt like my counselor and I were circling a drain, covering the same old ground we’d always covered. I wasn’t about to tell her about the things like glitching, I focused more on my sense of having no identity, of not feeling like I had a place in the world, of that nasty feeling I have when I’m around other people like I’m in a glass cube and can’t quite touch them or be with them. She gave me assignments, which I dutifully did, which had little effect. I started seeing friends again, though I wore out quickly. I tried to work events, though I barely had myself together and could hardly speak straight. I spent a lot more time with my daughter, soaking in her sunshine and trying to figure out how to keep her from becoming like me. The signs were already there, she’s very much like I was at her age and I hated seeing it. I wanted to conquer The Thing so she wouldn’t have to. We got a cat. We went camping. I started trying to repair my relationship with my husband. I was depressed, in a low-level-functioning, blank kind of way. I got The Tee out, which made me happy for about five minutes until my inbox started to fill with hate mail.
Then one day, while reading Gawker comments (of all things), I read a throwaway line about how someone’s mother might be Aspergers, that it shows up very differently in women than men. I was intrigued and turned to google. I like to collect information about the variety of the human condition, and somehow I’d missed this one. I thought I’d do some interesting, diversionary research. As I settled in to read the first page that came up, something happened. This wasn’t a piece of light google research at all, this page was a mirror. I read there in that list all my everything lined up next to each other, with nothing left out. The weird medical ailments I’d given up mentioning to doctors (that I now know is all Sensory Processing Disorders), my specific failures (dropping out of college, losing friends as soon as they got to know the “real me”) and weak points (I am exceedingly clumsy, and that one problem I’ve always failed at fixing has a name- Executive Function), my strong points (tenacity), my gifts (I think in vivid, visual, synesthetic ways), my secrets (my reading comprehension is so poor that long ago I learned I had to read something 3-6 times before I had a hope of catching the meaning. As a gifted student, I simply learned to read faster and repetitively and shut up about it because grades were one of the few avenues I had to get approval). A few things didn’t fit, and I rejected others out of hand that later I understood were things I do actually do. I cried, and cried, and cried. Then I was done crying. I was done raging.
I read the list to my husband without a preface, and he thought it sounded like something written about me. He reeled that back when I told him that means I’m autistic. He knows me better than any person on this earth, I’ve shown him more of myself and the things I struggle with than I ever showed any other person, and I trust his judgement over mine because he’s usually right about things. I needed him to help me sort this out. We took a few days to read separately and think, and even took some online Autism quizzes together to compare our scores. The big long 100-odd question quiz that spits out charts shaped like webs made us both laugh as we read out questions and answered aloud “Of course ——,” only to discover the other person put the opposite answer. By the end, without looking at our results, he tentatively agreed with me that autism was worth investigating. I made an appointment to see my counsellor to get a referral for diagnostics. She wouldn’t be back from holidays for a few weeks, so I had to wait.
Sometimes I thought “Yes! This is The Thing! It’s only autism, after all! I can work with this!” and other times I thought “No, you’re insane, you can’t be autistic, what does that mean, who am I, why are you still on this earth?” I read a few blogs by Aspies and felt a powerful connection to the lived experiences expressed there, and I read a book called Aspergirls that resonated with me, but I also didn’t want to queer my diagnostics from over-reading. So I tried to stay away from the blogs and books to work on my growing Tidepool Collection concept.
I was always a fearful, anxious child growing up, prone to panic attacks. My father taught me how to conquer my fears, to grab hold of them and to face them because living in fear of something means we live a life that’s smaller than it should be. That’s how I overcame fear of heights, fear of small spaces, fear of deep water, fear of people, fear of leaving my luggage behind on accident while traveling overseas, aversion to hand dryers- through exposure, grabbing onto the fear and realising my fear was more detrimental to me than the thing I feared. This is how I handled my uncertainty in this case. I sought out a local Aspergers adults group and decided to go to an upcoming meeting on women in autism, with a special guest speaker from Denmark.
The morning of the meeting, I was so nervous I threw up twice. But I was determined to see for myself, to face things, one way or the other. It helped that the meeting was at a big library on one of my usual routes through the city, so I didn’t have to think about how to get there. I dressed nicely for the meeting, as is my habit when meeting new people. I went through my ritual of putting on makeup, checking my hair, and making sure I was well-put-together from shoes to hairpins before leaving the house. I thought “At least I’ll know, and if I don’t fit there, it’s just one more group where I don’t fit in, no big deal.” The library has a large open square in front of it, and it was pretty full of students and families that morning. I walked to the doors and suddenly two young men approached me, letting the girls in front of me pass by. “Are you here for the Aspergers meeting?” one of them asked me. I nodded and they showed me to the meeting room. Later I found out that many people on the spectrum can “pick it” in other people, which is how they spotted me despite my normal-person veneer.
I don’t know what I expected to find in that room, but I was shocked at how familiar it felt. The motions of the bodies, the way one guy paced around at the edge of the room, the guileless friendliness, the butterfly-hopping conversations about engines and physics and conspiracy theories, the gesturing hands felt to me like I walked into a family reunion. The only thing missing was a Roman-candle war. I still can’t think of any other way to describe that moment, I was dumbfounded to walk into a room of strangers and to suddenly feel so at home. I’d never felt at home like that in Australia. This is not my life, this is not the way walking into a room of strangers usually feels. I sat and chatted with a young man, discovering that most of the people in the room can’t drive, either. Then the speaker moved to the front of the room and I was lost in her words. She’s from Denmark, raised by a single mother, and was diagnosed at 16 but other than that, much of what she said struck me to my core and spoke to my own experiences in life. I couldn’t believe it. This doesn’t happen to me, feeling like I belong in the space I’m taking up. I went home that day secure in the knowledge that whatever I was, whatever the diagnosis, I liked these people and got along with them. That felt like a massive win, I’ve been lonely for a long time.
I met a woman that day who has become a treasured friend, a real reciprocal woman-friend who doesn’t seem to bring along the confusing baggage that other women friends often do. She’s not my keeper, or my counselor, or my mother-stand-in, or someone who takes pity on me or is jealous of me or who wants anything from me. She’s just my friend. When I’m down, she knows exactly how to help me up, and I do my best to help her in the same way. I’ve learned more about myself from her and from our friendship than I ever did in any book or doctor’s office. I’m really grateful for her friendship.
After that, I got my referral and then went to the Attwood Clinic to be checked. The meetings showed me what I needed to see, but I also wanted to be formally checked out and know one way or the other what was the source of The Thing. Before the appointment, to quell my anxiety I went through my mental-health-meeting checklist and made sure I was very well groomed, clean, nicely dressed, well-made-up. I knew it wasn’t “Aspie” to dress well, but it is a very ingrained habit and I really could not stop myself doing it. If I’m uncomfortable about a situation, I compensate by being as well-presented and prepared as I can be. My husband came along and was also interviewed, I took a test, I was asked questions, though some of them seemed to come at random and I felt my mind go blank. I’d grope around mentally for a minute before finding the answer, feeling embarrassed I’d fumbled. I was there for hours and hours. Later on, riding home, I went back through the whole thing and berated myself for showing my glitches. I always do that- rewind, look for what I did wrong, berate myself so I would get better. Then I stopped and had to wonder if those random questions were meant to make me glitch. Then I stopped berating myself for glitching.
They told me I’m on the autism spectrum, Autism Level 1, and what that means- I am high-functioning autistic. Though that sounds nice and mild, or maybe fun it isn’t always. It means that when I’m functioning at my best, I can pass for a normal smart person, perhaps a trifle quirky if you look close. It doesn’t really speak to the worst, though, the way I have to carefully avoid bright light or face days of migraines/a meltdown. The way I spent most of my life feeling like some sort of alien dropped onto the wrong planet (Wrong Planet, I later found out, is the name of one of the largest online autistic communities). It doesn’t speak to the days where I’m so “out to sea” that I can’t remember how to get dressed (pants go on the bottom half, shirts go up above) or how to speak to the people around me properly. “High-Functioning” says little about the way I always have social hangovers from interactions with other humans. Even when I enjoy the interaction, I always have to pay for it later. I’ve built it into my life, accepted that as part of the way I am even before diagnosis. The clinician did not recommend me for disability (that wasn’t why I went there, anyway), because I have two very important people in my life who help me make up for my shortcomings- my husband, and Susan Katz, Cake’s Editor. I was told to trust them, to go home and work on my business, to engage with the autistic community, to self-monitor my high and low times in a more intelligent fashion, and to read up.
So that’s what I did, with an enthusiasm about life that I’d not felt for a very very long time. I felt like maybe life was worth trying to live well, instead of a sentence to be endured. I felt so much anger and rage I’d been carrying around leave me. I’d tried so many ways to get rid of that anger, I knew it seeped into the rest of my life and poisoned everything, but I could never quite root it up, only cover it over. Then it was gone, replaced with a better understanding of who I am and what I have to offer and how that fits with the rest of society. We moved to the countryside, and that also had a dramatic positive effect on my health. It’s silent here, I look out over seas of treetops and hear the birds. In our old house, I remember sometimes sitting on the floor rocking and crying and not knowing why I was falling apart as the sounds of a busy city invaded my house- traffic, sirens, children screaming, neighbors looking after their lawns. Here, I can think. I can focus. My baseline anxiety levels have dropped to almost nothing.
With Susan’s input and support, I re-arranged the way we work on Cake to help me work with my strengths rather than against my weaknesses. We settled into something of a regular work-day, hammering out the new designs. I built home/family/personal care routines for morning and evening, slowly taking on more responsibilities and fitting them into the day. I found out that the Loss of Reason that had so terrified me is something called Autistic Burnout, which means an autistic person is so stressed and overloaded, they begin to lose functionality that they’ve built up. It’s like an overloaded electrical grid that has brownouts, or even blackouts. I still don’t feel like I am at the place I was before I started getting sick, in terms of functionality. Over the past year, sometimes we had to halt the work for a few days or weeks at a time so I could rest. I would never have permitted this before, but now I know that’s what I have to do and I submit. It’s taken my body and guts longer than expected to recover, as well, and I’m still working on building my physical strength and stamina to something like a 30 year old woman instead of a frail old lady.
But most importantly, I find myself in a place where I’m engaged with life. I’m taking care of my family well, taking care of myself, growing as a human being, and work doesn’t occupy the same misplaced priority that it did. I’m much more relaxed with other people, and feel more secure in myself. I think I made friends with my in-laws (that’s a big deal). I don’t want to die any more. It’s taken a lot of work, a lot of honesty, and a lot of courage, but my relationship with my husband is as close and loving as it was when we got married. Perhaps even more so. I don’t let work dominate my evenings and weekends anymore, so I have a lot more time to spend cooking delicious food and hanging out with my little daughter. I’m not so terrified of ruining her now. If she has my proclivities, my mental architecture, no amount of self-flagellation will change that because it’s already in her blood- she just needs my love and care, maybe some of my coping mechanisms, but not my baggage.
But one thing still haunts me from that time when I was sick with “reflux.” If you’re reading this, it’s likely you read my public meltdown on a big blog, just before I disappeared from the internet. I’m not going to link to it, because the whole thing makes me feel disgusted. When I started this blog, I very deliberately created a persona of myself to use for writing, blogging, and socializing. It grew into my real-life work persona, too. I did this because long experience has taught me that most people prefer me best when I play a character of myself, than if I am actually myself. The common advice of “Just be yourself and everything will be fine, treat others as you’d like to be treated” does not apply to people like me, it seems more like a very cruel joke. StephC is an amalgamation of several characters I play, mixed and melted together so that anyone who already knew me and read my blog would still recognise “me.” I didn’t do this to be dishonest, I did this because this is the way I know to best get along in the world, to best connect with other people. (Incidentally, this is a very common Aspie woman coping mechanism called “masking.”) I worked very hard on my StephC persona, to keep my worst traits out of her while still being true to who I am as a person. I strove to be sincerely kind and helpful, while being truthful, to approach the sewing and blogging with transparency, showing my processes and inviting you into my mind. It was really useful, approaching the writing through StephC’s eyes and always looking for positive or useful techniques and ideas to post. I always feared in the back of my mind that one day I would Mess Up Bad, just like always happens. I had some little slip-ups, mostly because I tend to mirror people and that means if a person is a Jerk, they get Jerk handed right back to them, usually even if I try my hardest not to do it. Those didn’t worry me too much. I did pretty well (for me) for years.
Then some blogger wrote a week of posts about what garbage my work is, despite the fact she got a pretty decent dress out of my pattern. Big deal. Most of the time, I’d laugh that off and move on, considering her attractive dress the best kind of revenge. I couldn’t let it go, though. It galled me. Now, I put this down to my fading Reason, and being overworked. For about a month, it ate away at me. Then one afternoon, when I’d been up for several days and also had a cold on top of the attacks, I lost my restraint. That wasn’t the right thing to do, I know that. I should have left it alone, but I didn’t. I said a lot of things I’d been holding onto for a long time, a lot of resentment, and frankly quite a lot of things that had very little to do with the situation in front of me. I’m going to be very careful here, because I’m not sorry for having those thoughts and feelings. I’m sorry I let them go in such an inappropriate, unproductive, and public fashion. You shouldn’t have to see that. Not even Blogger McCuteDress deserves to have to see that.
In the weeks and, yes, months that followed, I endured a prolonged deluge of truly nasty hate-mail in my inbox, to the point where hearing my inbox alert tone set my pulse racing. I was called names, accused of sexism, racism, ageism, pretty much everything except eating babies. When I checked my website stats, I saw that my meltdown caused unprecedented traffic on my sites. Truly. Nothing, not a single good or useful or interesting thing I’d ever done had driven as much traffic as me losing my temper for an hour. This disgusted me, all of it disgusted me for a long time. I’ve been in the online sewing community enough to know how much pride is taken in what a kind and supportive community we are, and I took those numbers as a sign of exactly the opposite. I was disgusted and disillusioned. That was hate-traffic. That and the mean spirited emails that hounded me while I was already wishing to be dead gave the lie to the myth of utopia, to me. Every time I would start to write a blog post, I’d think about that and go find something better to do with my time. Why should I bother, when it’s such an effort anyway? If I wanted to be read, I’d been shown very clearly the best way to get that attention. It wasn’t through hard work or consistency, it was to be a big bratty bitch. I don’t want to be that way, though, I’m not that person except in times of extreme stress. So I left it.
I struggled with this for a long time, because I am nothing if not a sincere person. I would not dishonour you by issuing some kind of fill-in-the-blanks bullsh*t apology, as was suggested to me by several people. I also felt like my thoughts on the subject wouldn’t be heard. So I shut up and kept working. It’s only recently, in going over and over the topic that I started to understand something. In the aftermath, I felt resentful that all my hard work and helping people had been disregarded like it was nothing. An outburst like that was very out of character for me and a serious symptom of my life going completely off the rails, yet no one seemed to wonder if I was in trouble. I guess it was more fun to kick me while I was down. It seemed to be assumed by many that this enraged being was “really Steph” and somehow I’d just faked everything else for years and years. I suppose that’s partially true, but it was especially poisonous because I’d actually learned the opposite through being StephC, I’d learned to look harder for positive reactions and logical answers, to be more patient and thoughtful. I’d fed my good traits steadily through blogging and it made me a better person, made it easier to live with The Thing, because finally I found a way to connect with others- through the cloth.
And somehow, somewhere, while thinking about this, I started to turn those thoughts inside out. I thought that perhaps the way I felt let down by the community falling short of its ideals might be how I made you feel that day about me, about my work, about what I do. I let you down when I lost it, I hurt you, possibly disgusted you. I’m genuinely, from the bottom of my heart, very sorry about that. I’m sorry I hurt you, I’m sorry if I embarrassed you, I’m sorry if I disgusted you. I know this happened a while ago, but it’s been on my mind to write this ever since I had that epiphany. I needed time to find words to express these things and I also didn’t want to come out with this randomly with my hands empty and nothing to show for myself. I also realized that in the same way I felt rejected despite the hard work I’d done, I was rejecting the sewing community on the whole for the actions of a few dozen frustrated individuals. That’s not fair, not at all, and I’m sorry I carried that resentment for such a long time. You don’t deserve it.
To everyone who sent me kind wishes for good health, and lovely notes in the past year, I want to say thank you. Your kindness meant more to me at that time than I know how to express, and was and is very much appreciated.
3 Hours Past the Edge of the World 