Over the past few weeks, I have not only received my second Second Degree, I have received a powerful message from our Mother Goddess Demeter. Belladonna LaVeau and Dusty Dionne have been bringing this message to Pagans across North American this spring and summer. You can read more about their mission in the Wild Hunt. If you have not yet had a chance to hear from Demeter directly on the World Love Tour, I strongly encourage you to meet up with them on one of their final stops if at all possible.
In order to continue doing the Work before me, that of bringing a living faith community to all Wiccans and witches of all generations, as well as sharing and spreading knowledge and learning, I am now seeking students to join me on this path.
Have you always felt a calling to the Gods but have not been sure of how you can serve? Do you want to improve yourself and learn how to manifest the best possible world for you and those you love? Do you want to be a part of building this living faith community in Mid-Michigan?
Please come out and join me at Weavers of the Web on Wednesday nights in Lansing. All our Community Night and Sabbat events are free and open to the public, although donations are greatly appreciated. Come and learn and practice with me, and if you’d like to do more, please, let me know.
I’m ready to help the light of the Gods shine a little brighter in this world. Would you like to join me?
The word “church” in our Western culture has become almost synonymous with the idea of Christianity. If it’s a church, it must be a place where the Abrahamic god is worshipped and pastors lecture from the pulpit on the teachings of the Bible, right?
Maybe not so much.
Merriam-Webster has several definitions for the word “church,” and while a couple still reference Christianity, it is not the main focus of the word. The first definition says, “a building for public and especially Christian worship.” Another definition reads, “a body or organization of religious believers,” and still another, “a public divine worship.” When we remove Christianity from the discussion, we find that the word “church” really means, “a place for public, group worship of the divine.”
This is the spirit in which Lansing’s new Weavers of the Web was born. Founded in 2018 by Solinox Silverstar, Weavers of the Web’s mission statement is “to provide the community support and public ritual structure so that all Wiccans can celebrate and worship together, at all ages and stages of life.” Weavers is a Wiccan church, founded on the principles established by the Aquarian Tabernacle Church.
A Wiccan church, you say?
The unit of organization usually associated with Wicca is the coven, a close-knit group of initiates. Everybody within a coven is generally an initiate, working on their own path toward priesthood. Everybody is involved in studying the Craft and in working magick, and (theoretically, at least!) everybody is working toward their own elevations and eventual priesthood.
Where does that leave those who believe in Wiccan deities and principles, but who do not have the calling to become clergy themselves? What about the other elements of a church community, the social group that provides support through rough times and celebration of good times? What about children, who are not old enough to initiate but want to share in the celebrations of their family’s faith? That is where the Wiccan church comes in.
Solinox Silverstar, founder and High Priestess of Weavers of the Web, grew up in Christian churches as did many Pagans of her generation. She continued to attend different Christian churches for a couple of years after admitting that she did not believe in the religion itself. She wanted to belong to the group, to go to the youth group field trips and participate in the choir, to have someplace to go once a week where people knew here and welcome her. Ever since then, Solinox has had a vision of creating this kind of community for Wiccans … a Wiccan church.
Do you want to participate in a Beltaine or Samhain celebration, but don’t have the resources or experience to put on your own and don’t know how to join a local coven? Do you have kids, and can’t imagine bringing them to an adult-oriented ritual? Come on out; at a church, celebrations are always open to the public of all ages. Do you want to learn more about Wicca and magic, but don’t have the time or inclination to initiate and spend years in study? Come on out; the church’s Community Night events provide Wicca 101 basic instruction and offer opportunities for working rituals, meditations, and more. Looking for somebody to officiate at a wedding or handfasting? Come on out; that’s what the church’s clergy are here for. Are you interesting in taking the step to become clergy yourself? The church can provide that as well.
Are you looking for a place that offers you the opportunity to belong, to practice and celebrate your Wiccan faith? Look no further than your local Wiccan church.
God has a plan. Pick your god, they all seem to have a plan. Or at least that’s what people tell me. The message comes in many flavors. Some of them I have expressed a personal belief in myself. Right now, I am struggling with reconciling all these messages of planning, safety, and purpose with my life right now. I don’t think I would call this a crisis of faith, necessarily, although the phrase has come to mind. It’s more of trying to wrap my mind around the way things are at the moment, and relocating that inner sense of peace and purpose that tells me my beliefs and my reality are aligned, and I am moving again in the right direction.
I’ve been quiet on my blog for a while, but as usual life continues at breakneck speed around here. As of today, I am finishing up my junior year at Woolston-Steen Theological Seminary (with homework that needs doing), working towards my second-degree priesthood for the second time (new tradition), running an online and festival-based business selling the full variety of handmade things I can create, homeschooling my two youngest children, trying to keep my four teens on track with their own schoolwork and life planning, and coordinating and managing medical care and therapies for blindness, autism, allergies, and hypermobility for myself and the other seven people in the family. A couple of months ago, I felt like I’d managed to find a balance for all of this and was feeling that sense of alignment and purpose, moving forward and getting things done.
Then we found out about my husband’s Little Alien Visitor, the giant brain tumor. (“Giant” was the neurotologist’s word, I didn’t make that shit up.) And I feel like every kind of “missing floor” scenario happened all at once, and just won’t stop. Missing the top step, falling down the stairs, waking up from a dream of falling, the memory loss you get from head trauma. I feel like my brain is completely scrambled, and I can’t seem to find my footing. The falling never stops.
We’ve been down the path of new and crazy medical things before, certainly. And every time a new diagnosis comes along, there’s people who try to offer advice that comes across as offensive or at least not at all helpful, like the woman who wanted to sell me her company’s special blend of macronutrients to cure the genetic condition causing my baby’s blindness (puh-lease!!).
What’s really getting to me right now is the comments about planning (and the subtexts that I hear inside them). My Baptist mother-in-law tells my husband that God has a plan, so don’t worry (because God plans on disability and pain and suffering, and let me just state right here that I find that idea abhorrent when combined with the idea of only getting one life on this planet). I hear variations on the same theme from various teachers in seminary: The Universe is a safe place (so death, disability, and permanent brain damage shouldn’t be anything to be afraid of). It doesn’t matter how crazy your life is, we all choose our priorities (as if I can just sort of choose not to get therapy and medical treatment for my children or clean the house or be there for my husband during this or something).
And this is where I get into trying to align my perceptions and feelings right now with my beliefs, because I have espoused the planning concept before, in different ways. I have always believed that we choose the lives we expect to live before we are born, that as non-corporeal spirits we have a wider multidimensional view and have some idea of what we are getting into when we choose a body. I believe that we know the genetics of the body we are coming into, and we know the personalities of the parents we are choosing, and we are actively making those choices either to accomplish personal spiritual developmental goals or to place ourselves in a position to help somebody else with their own goals. So yes, I believe that babies who die shortly before or after birth chose that path, that my husband chose a blind body, that I chose a hypermobile body with a neuro-divergent brain. I also believe that I was destined to meet up with the family that I have, blindness and all, that I knew they were coming my way long before I even met my husband. I don’t presume to know or understand why some of these choices have been made. But I believe that I knew before I was born into this body, and that I will know again after I move on from this life.
So I guess that means my struggle right now is to accept all of that, without being able to understand why. And I can’t seem to get there yet, and maybe that’s why I keep feeling like I’m falling and I can’t ever manage to get up. I don’t do the “denial” stage of grief much, because my logical brain doesn’t see the point. But I am smack dab in the middle of the FUCKING ANGRY AS ALL NINE HELLS stage right now, of wanting to scream and cry and ask “Why” at the top of my lungs, because it’s NOT FAIR, it’s NOT FAIR AT ALL, and how dare anybody plan this shit for us.
(Part of this is a rewriting of a previous post that can be found here. I have updated my writing on Loki and added some on Aphrodite.)
Loki started out Calling me quietly. His name would come into my head, especially in times of difficulty or when I felt lost, with a compulsion to look Him up and learn more. I would read a few stories or websites, and then dismiss it as something I didn’t need to pursue. This went on for several years, each Call a little louder than the last. It culminated in early 2013 at ConVocation, when I felt the urge to attend a workshop on Loki and Trickster. The feeling that I got during that workshop was akin to the way you feel upon getting the solution to a tough riddle or puzzle, one that has bothered you for years. I had been looking at Him all wrong, and once I got the angle right, everything seemed obvious. My whole life, which always felt like one long series of extremely unusual events, was just preparation for serving Him openly and directly.
That very weekend, I acknowledged Loki’s Call and accepted Him as my patron. The next twelve months were a period of reflection, introspection, and revelation for me as I worked through His charge to Know Myself. I learned to see my life and my self through a new lens, one cleaned of the foggy filter of perfectionism and trying to fit in. I learned to see all the intricate ways the randomness in my life is connected, how so many chance things have converged on my path. I spent time studying both the religion and culture of my ancestors, in an attempt to better connect with this god of my ancestors. I even took on teaching a class on the Vikings in our homeschool co-op, forcing me to delve deeper to stay a step ahead of my students (often at 1 a.m. the night before the next class).
Essentially a year and a day passed, and I found myself again being nudged by Loki. Except with Loki it doesn’t really come as a nudge; it comes as spilled drinks and broken cigarettes, random jukeboxes and fritzy elevators, machines that don’t work, stumbles, power outages, loud noises in the silence. I can be dense sometimes, but I did finally realize He was trying to get my attention, so I asked a close friend to do a reading for me to shed some more light. The impression that I took away from that complicated reading was that the first year was analogous to my postulancy with Loki, my year of learning and thinking and looking around through these new eyes. “Now,” He said, “it’s time to step it up, move forward.” There is no time with Him for sitting around letting the same old same old go on every day.
It was a hard place to be in. I am already in a fringe religion, and here I was being Called upon by an even fringier god to light my torch for Him in this world, to stop observing from the sidelines and be that agent for change, be the one to shake things up, be the one to be loud and proud. This was not a request that I abandon my path toward priesthood in the Craft, but rather that I take a step up in working for Him and owning His patronage in my dealings with the world. I had a strong feeling that an Oath was wanted, but I wasn’t ready for it yet. I knew how serious an Oath was with the Norse gods, with any gods really. I knew that anything could happen once that Oath was given.
I did smaller things for a while. I wrote a prayer for Him and added it to my daily devotions. I started studying my ancestral crafts, making them also a part of my daily practice (and how “lucky” for me to finally find something to use as a nalbinding needle the very weekend I got that nudge!). I bought lottery tickets for my altar. I kept my mind open to His voice and paid attention when I noticed it, heeding nudges as simple and silly as, “Let your hair down,” or a little bigger like, “Bring your music back and share it with the world.” The negative nudges mostly stopped (except the trouble with machinery) and positive ones started to flow again, the serendipitous encounters, the chance findings of lost or needed things.
It took a couple of years, years of further upheaval in my life, both mundane and magickal, but I finally took the Oath in 2016. I swore to be His now and always, and marked myself with a tattoo in a place where I see it every day, so that I will never forget. I am Loki’s boundary priestess. It is part of my Great Work, to be that reminder to others of things unseen, things overlooked, assumptions too quickly made, processes that need tweaking, bugs in the system. Knowing this helps. I still live in that stream of craziness, but most of the time I can remember that I’m still just doing my job as Loki’s priestess, whether pointing out the holes in a first aid system by having actual panic attacks at a festival, or pointing out the holes in an educational system by having kids that don’t fit into government boxes.
Now I am also working with Aphrodite. She came to me through a certain turn of events, and She was much more forceful about announcing Her presence. When I look back at my life, though, again I can see a place for Her, a void that She has come to help fill and smooth over, a way She can help make my life a little more healthy and whole.
I see myself getting distracted while writing this. Working with Her is going to touch on things I’ve been skirting my entire life. She scares me. Her energy and power scare me, I’ve felt them and it still scares me.
I know about as much about Aphrodite as I did about Loki when I first acknowledged His Call. I know the myths. I’ve called upon her for spells. I worked more closely with her for a few weeks here and there. I’ll be working with Her as closely as I work with Loki for the next year or so, and I expect to learn much, much more.
Aphrodite is love, and sex, and passion, and sensuality, and lust. These are all things that I have believed in since I hit puberty, things that I advocate for. I identify as bisexual and polyamorous. I believe strongly in the logistical benefits of having more than two adults in a household, especially a large family with lots of children. I’ve always loved the concept of a line marriage. I don’t believe that my love for person A is in any way diminished by my love for person B, whether I’m talking about loving other adults or the love I have for my own children.
And I always wanted to be Maureen when I grew up, wanted to be that woman with enough sex drive for two or three women instead of barely enough for a quarter, who was never too tired or too sick, who didn’t actually get headaches from orgasms or have GI problems that made her too shy to let anybody near her or partially dislocate her hips during sex. I kept waiting for it. I heard somewhere when I was twenty or so that a woman’s sex drive peaks in her 30’s, so I thought, yay, once I get to my thirties it’ll happen! Yeah, that ship’s sailed and never even saw the fucking port.
When Aphrodite came for me, She hit me harder than Loki ever did. It was like getting bowled over by a sexual tidal wave. No other analogy comes close. It felt a little like going crazy, like some other personality had moved into my head and altered my drives. And this happened before I ever called on Her for working, before I had any clue that I was to be Hers for the foreseable future. And like Loki, when I realized what was happening, it was like solving a riddle, and everything suddenly made sense.
And I was scared. So scared that I haven’t invoked Her for months. She’s kept a place on my altar, and a place in my rituals, but real work and communion? That feeling of being taken over still scares me. And yet, like I said, I can see this void, a longing in my heart that I know she will fill.
Right now, I feel a bit like I did before pledging to Loki. I felt then like I was standing on the edge of a cliff, and I was being asked to jump off. It takes so much courage to take that leap, and I don’t think it gets any easier the more times I do it. I’ll jump. I’ll jump off the cliffs into the deep blue water, and dive deep, and take a long, long cruise with Aphrodite. And then in a year or two, perhaps I’ll look back and see how silly it was to be scared, and how low that cliff really was.
I will open this by saying that I’ve been told I was overweight or obese my entire life. My whole life, all the way back to junior high. My mom had me in Weight Watchers and special exercise programs and therapy programs for fat kids as a teenager. I learned all the height and weight charts and everything they had to say. I’ve known ever since I was 13 that I was supposed to weigh 135 pounds, no more no less, and until I did I would be considered unhealthy and a health catastrophe waiting to happen.
I’ve also known that I don’t have a typical woman’s body. My bony wrists are so big that I can’t buy bracelets and watches for myself off the women’s jewelry racks. My bony fingers are so big that I need men’s sizes in rings. My bony ankles and feet are at the top end of women’s shoe sizing, and so wide that I can’t even buy shoes in the regular stores anymore, especially not with the arthritis in my feet. I have to make broad back adjustments in any clothing I sew, and jackets and coats never fit me off the rack because of this.
As an adult, my weight has cycled up and down quite a bit, but I have never once been below 170 pounds, not since I was 15 or 16 years old. I think I was around 210 when I got married.
Mostly I’ve bounced around between 170 and 210. I think I was around 175 when I took this picture, and I wasn’t very active at all, not doing any real exercise outside of housework and child care:
Here’s one of me when I was probably 210 or so, near the end of my running period. At this point I was running about 40 miles a week and doing lots of strength training, so the shape of my body and my strength were very, very different from when I was 210 when I got married.
Somehow over the course of the years, I started to lose that belief in the height/weight charts, and the BMI numbers that succeeded them. I could see that they didn’t work quite right for me. I spent time researching other ways to measure my health. I could see that I was a runner who could do 12 miles at a stretch and then drop and give you 20 pushups, and yet my weight wasn’t what the weight fanatics said it should be. I found alternate ways to measure body composition, using a variety of body measurements, and found that at the peak of my running and strength training, my body was right about at an ideal 26% body fat even though my weight was over 200 lbs.
These days I’ve gotten back up to the large end. My weight is between 230 and 240, but my clothing size is about the same or smaller as when I got married, about 18/20. I’ve let myself go, even though I have some residual muscle hanging around from the running days. I stopped exercising almost entirely when I had to stop running. My pain levels just kept going up, and I kept thinking a little more rest would do the trick, until I realized this past winter that it had been almost three years, and now I was having trouble getting up when I sat on the floor.
I saw my blood pressure going up, and I had several nudges from the Goddess to wake up and start taking care of myself again. So in April I started walking every day, and in June I started up my strength training again. I don’t feel like I’ve gotten very far. My shape is the same, and my weight is the same, and my pain is about the same. But I can feel the functional difference when I get up off the floor, or get the bug to clean the house. Life is getting just a little bit easier with every week, and that’s good.
Last week, I participated in a medical research study. They paid me $20 to poke and measure me for a couple of hours as part of a study on the long-term effects of chronic illness on overall health. During this, I got the chance to step up onto a very nice high-tech body composition scale.
This wasn’t your ordinary bathroom scale, with the little pads you put your feet on. Those don’t do much better than height/weight charts, really. I’ve owned a couple, and I’ve been put on them in doctor’s offices and weigh clinics. The best number I ever got out of one of those was probably a projected ideal weight of 145, which is only a little better than that 135 height/weight number.
This high-tech scale was something else entirely. It didn’t just have feet pads, it had something for my hands to hold on to as well, and according to the printouts it measured each quadrant of my body as well as the overall total. Can you guess what it said my current ideal body weight would be, the weight that would bring me back to 26% fat if nothing changed in my muscle mass?
173 pounds. That’s with me feeling out of shape, with a lower than ideal amount of muscle on my body. Still, it says my ideal weight is 173 pounds, and that’s if I did absolutely nothing else to get stronger and more functionally fit, and just starved my body to drop fat.
I feel so vindicated now. I feel very sad for teenage me, thinking I was fat when I wasn’t, letting that drive me into giving up so many times and letting my body get truly unhealthy because I still had it in my head that the number on the scale was everything. I feel even more sad for all the other girls and women, and men, out there who think this number on the scale is everything still, who do amazing things for their health and fitness and then eventually throw it all away because of the frakking number on the scale.
But I feel very happy to see that I was right to think that I was healthy at 210 a few years ago, and now I know for sure that it’s okay to let that thinking continue and nurture it and let it grow as my body grows stronger again. And this time, I will not be ashamed of my clothing size or the number on the scale, dammit! I have a strong body, a beautiful body, and this is the shape it comes in!
I first learned how to run just a few years ago. I have never been an athletic person. I was always the musician, the geek, the bookworm. What got me started on running was seeing an old high school friend take up the challenge via the Couch to 5K (C25K) training method. She also was not somebody I remembered as being athletic, but she was able to take this program and end up running a whole race. So even though I had never run more than a few steps at a time in my entire life (even in school PE classes I managed to avoid it mostly), I took up the challenge to run a 5K.
When I started out, it was a secret. I asked to go shopping at the sporting goods store for my birthday instead of getting presents, but I didn’t even tell my husband why. I was so afraid of failing and looking stupid for trying. I told my oldest son, but only because I asked him to babysit when I went out the first time. That night, I told my mother, who was in the hospital at the time, because I wanted to share how proud I was that I had gone for a run.
I didn’t tell my husband for a few weeks, going out in the mornings after he left for work and before most of the kids were up. I struggled with the running. I felt like I was going to die after every run. I felt like I couldn’t breathe, like I was going to fall over. I even pictured myself just falling over at the side of the trail, collapsed until somebody came to save the stupid fat lady who thought she could run.
One day, I was doing my last run interval of the day while running up a hill near the exit to the cemetery I frequented. I kept going and kept going until at last I had to stop, I knew I just couldn’t finish the interval.
The announcement to stop running came less than 5 seconds after I stopped. I had almost made it!
I never quit early again. I always kept going, just a few more steps, just a few more steps, just to that tree, just to the next tree, anything to keep myself moving.
And within just a week or so of that run, I suddenly realized that I knew how to run. I had figured it out. Whatever the trick was to running, whether it was deep breathing or pacing myself or stride technique, I had figured it out. I no longer felt like I was dying. Sure, I was a slow turtle in the grand scheme of things, but I was running.
I had to quit after a couple of years because I pushed too far. I was so excited to be a runner and to realize that I could do this, and I wanted to see just how far I could go. Turns out my limit is probably 8K. And that’s okay. That’s more than I used to do, and pretty soon I’m going to get back out there and kick it again. Because now I know I can do it.
I’ve been saving up blog posts for a bit, making note of things I want to say but not finding the time to write the posts. This one caught me at just the right time, though.
This video recently came across my feed. It shows an adult woman having a meltdown, and her service dog doing his job of disrupting and calming her.
Normally, we think of meltdowns in terms of children, especially autistic or ADHD children. We think about how they look like tantrums and how to convince bystanders that they are not just the result of bad parenting. We think about what causes them, fatigue and overstimulation and pain and diet, and we work to modify the environment as much as possible. We have our service dogs for calming and disruption, and as parents we are always on the lookout in new places for where we can safely take our child when the next meltdown hits.
How many of parents fully realize that these meltdowns might not be something their children outgrow? I know a few spectrum children personally who show no signs of leaving meltdowns behind even as they approach 21 and beyond. How many of us think about how the world is going to deal with our adult children when they meltdown in public?
How many adults like me, who skated under the radar as children, realize what is going on when they finally hit their breaking point as adults?
It’s not a pretty picture. Autistic adults have been shot, tazed, and otherwise assaulted as if they were dangerous criminals when all they needed was a temporary reprieve from the assault on their senses or emotions. People who are already self-harming in a meltdown can lash out instead of calming if they are approached aggressively, and when you’re talking 250-lb man instead of 50-lb child, things can get out of control in the blink of an eye.
I was lucky. My first adult, “public” meltdown resulted in a security escort and a lifetime ban on entering the medical building where it happened. But I didn’t get arrested, and since then I’ve learned to just shut down when people are around, to wait until I can run and hide before letting it out. I focus on my kids, which gives me something that needs doing, that keeps me from having to look at anybody else, that keeps others from talking to me.
What if that office had arrested me instead of giving me a room to let it out and then letting me leave?
What about those who can’t hold it in until they can hide, who don’t have an understanding companion or an ever-needful set of children?
I know I’ve done my share of railing against phony service dogs. But not every little dog accompanying sighted adults is a phony. Some of them are there do to exactly what this dog is doing, to help calm and protect their owner until they are in control of themselves again. And you may never ever ever see these dogs actually do their job in public. Often just the presence of the dog is enough to help the person hold it together long enough to flee.
And if, one day, that seemingly-normal adult finally reaches their breaking point in public, that dog and its presence could be the difference between an escort and a death.
I am autistic. To be more specific, I am a very high functioning autistic, which means that I don’t look autistic. I pass for neurotypical most of the time. The passing makes it hard to cope with, though. Sometimes I wish there were some visible symbol I could have so that people would know what I am when they first approach me, but I don’t have a cane, or a wheelchair, or a service dog, or braces, or anything else that indicates that I might be anything other than what people expect. So people expect their interactions with me to go a certain way, for me to respond a certain way. Even when they’ve seen more of how I function, they still tend to go back to expecting me to function neurotypically. And of course I get blamed for it when I don’t.
I struggled to come up with an analogy that might convey how I feel about this. It’s hard precisely because it doesn’t really happen elsewhere, it’s not something that anybody would consider doing to a person with a visible disability. The best I’ve been able to do uses blindness, since that is a visible disability that I have the most experience with (without actually being blind myself).
When a blind person walks into a room for the first time, say to join a club or a church, they might run into people they can’t see. They might have difficulty identifying people when they only have a voice to rely upon. They might have to use their cane to find their way around the room, to learn the map of the furniture. If they do physically run into somebody, or knock over a drink while walking, or commit some other faux pas, of course they will apologize. They certainly don’t intend to run people over, or to break things, or to make a mess. They just can’t see where they’re going, they can’t see when they’re about to run into something, and bumps and spills and stepping on toes happen to the most mobile and independent blind adults. It’s a functional aspect of not being able to see the world around them.
What generally happens when a blind person joins a new group is that people are solicitous. Once they know that the blind person can’t see, they understand why bumps and spills happen. They may make an effort to move out of the way when the blind person is walking around, they will try to warn them of things that need care such as open glasses on the table before them, or children running about on the floor, or a cat on the chair they’re about to sit in. If not, that’s okay, too; the competent blind adult tries their best to use care in movement, and when mistakes happen they can apologize and carry on.
What if, instead of watching out for them, everybody in the room continued to pretend the blind person could see? What if they kept showing pictures without explaining (yes, I know I’ve been guilty, but I do try), saying “Hi!” without attaching a name to the faceless voice, getting upset when the blind person runs into them, getting upset when something gets bumped or spilled? What if every response was along the lines of “Why can’t you just watch where you’re going?”
As if they could just manage to see everything in the room and comprehend and interact with it visually if they just tried hard enough.
“I need you to see!”
This is how I feel interacting with other people. Would you blame a blind person for giving up on having a social life, if this is what they always encountered?
In every social group I’m in, in every relationship, eventually I’m going to say and/or do something that royally pisses people off. It’s inevitable. It’s going to happen, because in social relationships I can’t always see where I’m going. (To go back to blindness, a blind person knows they’re going to fall and run into things at some point, because they can’t see where they’re going.) It’s the hallmark of autism all the way up and down the spectrum, having difficulty with communication and with social interactions, and it applies to the high-functioning Aspie end of the spectrum as much as it applies to the non-verbal, non-functional end. But those of us on the Aspie end can pass. We don’t immediately present as autistic, and we can even go a lifetime without ever being formally diagnosed by a doctor. We’ve learned how to mimic looking folks in the eye or how to acceptably avoid it. We’ve learned some required social scripts, how to say hello and goodbye, please and thank you. We’ve (sometimes) figured out when it is not okay to talk about the things that really interest us, and we have a list in our heads of Things Not To Say Or Do (you know, like “don’t stare at her boobies”, “don’t talk first”, “don’t make the first move”, “copy the people around you in any situation”).
Much like a competent blind adult knows how to use their cane to get around, has lots of practice creating mental spatial maps, has learned special tactile and audio skills to help make up for the loss of vision. They know to turn their head toward the person they’re talking to, that it’s not okay to rock or poke their eyes, how to tell if the pot of water is boiling or the cup is full. Some, like my husband, do these things well enough that they can pass for being sighted, at least for a little while. Nobody ever expects that this means a blind person is sighted, though.
That seems to be the expectation most people have for people like me, though. That because I can pass for neurotypical, then any mistakes that I make are intentional and willful, just a matter of not trying hard enough.
And gods forbid I ask for help. When it becomes clear that I’ve messed up somewhere, I’ll try to figure out how. I want to know where I went wrong, so I can add to my list of Things Not To Say Or Do. I want to know what I should have done, so I can add to my social scripts and perhaps avoid a problem in the future, should that particular situation ever come up again. I won’t understand why my intention didn’t come across, any more than a non-verbal autistic understands why their caregivers don’t understand that this particular screaming fit means that they have a headache, but I will accept that the communication did fail. But asking for help always makes it worse. Asking for help pisses people off even more than the original offense. They lash out at me, stop talking to me, yell and scream, tell me I don’t belong, ask me to please shut up and go away.
Imagine a blind person, after running into several people in a crowded room, asking for a little help in finding a seat, and being yelled at to just watch where the hell they’re going or get the hell out.
Hard to imagine, isn’t it? Because nobody would ever do that to a blind person.
Yet it happens to me all the time.
Is it any wonder that I just don’t bother so much anymore? Is it any wonder that I would rather just stay home than try to deal with people, stay out of online forums instead of trying to find community? I’ve had trouble in doctor’s offices, in parenting groups, in offices where I work, in schools, in crafting groups, in religious groups, even with neighbors and friends who have known me for years. No place is safe, I am never safe from that expectation that I should know better, that I should understand what I’ve done, that I should somehow be able to follow along in a dance I can’t see.
Is it any wonder that even high-functioning autism becomes a disability?
Is it any wonder that I treasure my husband so much just for being there for me, for continuing to stay by my side and loving me through every miscommunication and misread glance and gesture, through every misspoken word and misunderstood request between us?
Is it really such a terrible thing for me to ask for help when I can’t see where I’m going?
I’ve found in the past couple of weeks that it is hard to describe my relationship with Pat to others. Some relationships you can encapsulate in a few words: my childhood friend, my grandmother, my next-door neighbor. Pat was different. She was a mother of a friend, but also a friend in her own right. She was somebody I knew such a short time, but it felt like she’d always been there. She came into my life through tragedy but stayed because of love and friendship, and I wish I had met her sooner than I did. How can I describe that in only a few words?
In my own family, an odd set of circumstances meant that my father’s oldest sister and my mother’s mother, my aunt and my grandmother, were the same age. As I grew up, I watched their lives go in drastically different directions. My grandmother continued to paint and craft, making clothes and doilies and dolls and ceramics, but her health declined dramatically, and her last years were spent sitting on the couch and in bed, unable to get around on her own, as system after system in her body wore out and shut down. My aunt, on the other hand, is still alive, riding her bike, hiking, camping, occasionally going back to the nomad lifestyle I admire to travel and visit friends and family. She is so active, she walked out of the hospital just days after bypass surgery a decade ago and never looked back.
Watching these two relatives of mine grow old and approach the end of their lives in such divergent ways made me feel like I had a choice, to either stay strong and active, or stay indoors with my more passive crafts and have my body fail me in the end. What a choice! I’ve always said I wanted to be like my aunt, the Bicycle Lady of Kenya, physically strong and capable, able to live on the road out of a van and also able to cook a gourmet vegetarian Thai dinner from scratch. But I wanted to be like my grandmother, too, continuing to make things with my hands, cooking hearty soul food and sharing stories and skills with my descendants.
And then I met Pat. Here was a woman who embodied both of these ideals. She was strong and active. She made me feel like a wimp every time I tried to work outdoors with her, as I would falter and give up after an hour or so, and she’d just keep going all day long. She had all of the independence and survival skills I’ve always wanted to cultivate, and then some, growing and preserving food, gathering food. I can see where Chris’ love for the outdoors and skill in making do originated. She faced whatever came toward her head-on, making plans and making things work out. She was always happy to share her knowledge, her skills, her home and her land, looking for ways to help others. She was so unassuming, never wanting credit for the things she did. She would show up at my house while I was gone, plant some pretties in my yard and my garden, and then leave, never saying a word. Whenever she had extra of something, she would give it away, saying, “Here, take this, take this home with you,” and I at least could never say no. She loved to make things with her hands, too. She did painting, and she did quilting. Her whole life seemed in balance to me, quiet and strong, passionate but reserved, active and creative, wise and knowledgeable in so many things.
I saw in Pat the woman I really want to be when I grow up. I wish I had gotten more time with her, as we all do. But she will live on in our hearts, in the heart of her husband, in the faces of her son and her grandchildren. Pat’s strong and generous spirit will never die, for what is remembered, lives.