As of this writing, David Byrne’s “American Utopia” tour is just a few weeks in and getting critical raves. At the time that I bought the five tickets for our family to see it, it wasn’t the “American Utopia” tour; it was called “LiveNation Presents David Byrne” and was just being called a very limited East Coast tour with the “most ambitious” stage production since “Stop Making Sense”.
Well. As if we had any choice.
The press and scope of the tour multiplied in the months that our tickets sat in my inbox, and we were in no way prepared for the enormous March snowstorm — complete with cinematic, rolling thunder — and big, wet splats that unfolded from the sky “like doilies”, a friend described later — that started the night before we were to drive to Hershey for the show. (At the time I bought the tickets, the only other nearby venues were Wilkes-Barre, and Kingston, NY.)
As the snow fell, I watched on Facebook, on the Hershey Theater’s page, as ticket holders grew nervous, demanded a reschedule, and got nastier and nastier.
I was having an incredibly bad neuro day. But we had waited for this for months. And it meant so much to Béla. Ben’s strategy was to get on the road as soon as anything stopped falling out of the sky and the roads were freshly plowed. The kids were given free reign for this day of waiting, to watch TV — anything they wanted — which, of course, meant a day-long soundtrack to Lego “Ninjago”.
I have problems with high altitudes, and Hershey has been a problem in the past, so in that regard we were more prepared to go than the last time we were there. I use sports-type oxygen in the car. We had that. We had everything there was to have, ready. We were packed. And I was just a rigid, twitching mess. When the snow stopped falling, I’m sure many people would have opted to not have put me in a car headed out of town, but I’m sure that I expressed that we were going, as long as I was anything short of dead.
I started “coming back” when we were not quite on the Turnpike yet. We were in the car. Success! Of some sort. I tried to picture our destination. I kept seeing a restaurant. We were going to eat in a restaurant. Some sort of “family restaurant”, like a Cracker Barrel? (I think this was a leftover memory from our last trip to Hershey.) But I wasn’t sure what else we were doing.
I told Ben I couldn’t really put together a timeline for what was upcoming, and he said we were going to a show. We were on a highway with virtually no other cars, and the snow on the trees looked like clots that had come out of an old spray can. I wanted it confirmed that this was abnormal snow. Everyone agreed that it was. Seeing so few cars was also unusual, yes? Yes. I didn’t know what was normal, but I did know what was abnormal, so that was a start.
A show, huh? “We’re going to see David Byrne,” Ben said, and that didn’t set off any bells of alarm or terror, so I thought, great! We are proceeding with plan, even though I am not feeling all that up to it and don’t really know what David Byrne does for a living. The more we drove, the more I was able to sit up straighter and take note of our surroundings. There were quite a few accidents on the road, but still very few cars, although the closer we got to Hershey, the less snow there was. But I could not make a mental picture of the show we were going to no matter how hard I tried. We had been to the “David Bowie Is” exhibit just a few days before. This was not that? No. This was not that.
I was starving. We stopped and got hoagies at a Wawa, and kept driving.
It is important to normalize, or at least de-stigmatize, the experience of all neuroatypical people. As with any autistic person, I expect, and frankly demand, that people presume competence when communicating with me, a person who has temporal lobe epilepsy. Read up about what the temporal lobe is in charge of, and you will note that it is in charge of many things that you may associate with my personality, both good and bad. Temporal lobe epilepsy is a comparatively drug-resistant form of epilepsy. I have seizure clusters surrounding ovulation and menstruation, and when I am under a lot of stress. I am not broken, or unreliable.
If I thought about it really hard, I knew who David Byrne was — sort of — but didn’t remember ever being interested enough in him to drive this far, and I still could not put any images of my anticipation of this event involving David Byrne into the narrative in my head. And so I explained this to the kids; that my brain was just kinda putting the pieces back together. Like when you draw something on a window with your fingertip, and then blow on it to create the condensation to make it visible. My brain was “breathing” again and I was working on deciphering the pictures I had.
I went to YouTube on my phone and pulled up a Talking Heads clip from “Stop Making Sense”. For years, when feeling bad about myself and my seizures, I have watched this clip, because David Byrne makes my “symptoms” — my “disability” — into an intentional dance. It is aspirational. It has soothed me for as long as I can remember. That someone would not only NOT hide this kind of repeating, “abnormal” movement, but would use it to perform something wholly original, has at times been the thing that allows me to pick myself up and keep going.
Watching this clip as we drove to Hershey served the purpose I hoped it would. I saw David Byrne’s nose and chin on my phone screen, and they tripped the wire in my head, and knew exactly where we were going. I knew what the cover of the new album looked like, I remembered the articles I had read with Béla about how they had rehearsed the tech for the production. I knew that Béla absolutely loved David Byrne. I knew that I had sworn to use every penny of the sale of my father’s house that I could for joy — to eradicate the fear, the tightness, the terror that my father’s life had brought. I remembered choosing seats for this show, and looking at the total on the screen — over a thousand dollars. It took me a number of minutes to hit “Send” that day. But the kids — particularly Béla — were going to see David Byrne.
The closer we got, the more I had to use the oxygen we had brought, which was fine, and I was feeling not that bad — not really able to eat my sandwich, but not awful — by the time we got to the theater. We were sure they would not let me in with a bottle of compressed oxygen, and that was kind of a shame, because I missed it before we had gotten to the door. But we were there. It was happening. We were in. We had done it.
As soon as we went through security, I had a strange, anticipatory feeling — like I was waiting for someone to call my name. Two men passed on either side of me and I thought oh wow — aren’t those guys that Tucker’s dad knows? That would have been a strange coincidence. We made our way to our seats, but I was jarred at almost every step by the faces around me. I recognized everybody.
We found our seats, I went to the bathroom. I was definitely not having any seizures anymore. I wished I’d had the oxygen. But, in the ladies’ room, I was again taken off-guard by familiar faces.
I found my way back to our seats and sat down. Everyone around us was someone I knew. Possibly even someone I came with. While at second and third and fourth glance of the people seated near us, they were still familiar, they did not illicit the “Hey, THERE they are!” response that my brain was shooting out to literally every other person in the theater. But that response was being triggered by every new face that came into my range of vision. This was irritating as fuck.
I have had the experience of not recognizing faces post-ictally. That would have made sense. This didn’t.
I demanded that Tucker look this up on his phone — on one of his special scientist websites — what was the word for this? It must exist.
I don’t know if there was one specific word, but it was right there, as a post-ictal symptom for people with temporal lobe epilepsy — seeing strangers’ faces as familiar. Right there on the screen.
Thirty years since my diagnosis, and I had never experienced that one. I wondered to myself, what would happen when the one other face I definitely recognized — David Byrne’s face — appeared? Would it look twice as big on his head?
I don’t know if I thought about it much longer. When the barefoot, white-haired man crossed the stage to briefly speak to the audience before starting the show, we cheered. I looked at the kids — especially Béla — recognizing what a special moment this was for us together. I was so happy. We did it.
The show began. The man on the stage sat at a table, a large, curved object in his hand.
Here is an area of great confusion
Here is a section that’s extremely precise
Here is an area that needs attention
Here is a connection with the opposite side
“He’s holding a brain,” said Ben.
He was. We had made it to the show, and the kids and I had said to each other ten times already, “We did it! It’s already worth it!” But in the depths of my shame for not being a “normal” happy-go-lucky mom who could drive a car and did not have seizures, and who regularly had to watch a 34 year-old video of a rock star jerking around just to feel humanized — in the midst of finding some new artifact of my abnormality to contend with — this man had literally brought a brain onstage, and was pointing to parts of it and explaining what they did, free of judgment, and with music.
The second song was more upbeat. Again, I watched Béla — after all, it was Béla who wanted to see this man the most! This was his guy! — and I watched the show.
Then, something I can only describe as the thinnest knife ever made — remember the old commercials where the woman cut a knife-shape out of a paper plate and spread icing across a cake with it, to show how easily the icing spread? This knife was thinner than that paper knife. This was one-cell-thick, but it was a knife. And it went right through my brain. And I said to Ben, “Oh my God. That’s David Byrne.”
Ben agreed. Who knows how he actually perceived that moment: I was just excited? The enormity of it all was worth re-stating? Whatever. I was happy, so he was cool.
“NO!” I shouted. “That’s David Byrne on the stage!”
At this point, Ben sort of shushed me, like I was one of the enthusiastic drunks we see often at concerts. Suddenly, I was the concert drunk.
I was not drunk but I was VERY surprised. “That is DAVID BYRNE!” I said, turning to Tucker. “Up until this minute I thought it was GARTH!”
Our friend Garth is easy enough to Google. He is a well-known and highly respected artist. He does not look like David Byrne, in any way other than that he is a man over fifty whose hair flops around a bit. Not for one moment in the first one and a half songs did I think “Well that’s odd. I thought we came here to see David Byrne. What’s Garth doing up there?” It seemed justifiable. Names hadn’t entered into it. Of course the kids were happy — look at Garth! He’s always up to something.
Up until the moment when I realized it was David Byrne, I hadn’t really realized that I “thought” it was Garth. Garth was just the placemarker for the unrecognizable person on stage — who, again, was the ONLY other person in the room other than my family that I should have been able to recognize, and was the ONLY acknowledged reason I was there at all. I had both missed, and NOT missed, his entrance entirely.
What the fuck, brain.
But I was fully caught up now. Still wished I had my minty oxygen bottle. And when this happened, I danced as much if not more than anyone else. Ben took this, and had one of our kids on either side of him. You can hear them both singing here.
It was a beautiful show, a truly ecstatic music experience, and an amazing thing to have my kids jockey to switch seats so they each got time next to me, me standing with my feet on the floor, them standing on their wobbly old theatre seats, their bony hipbones pressing into me as we danced and swayed and sang.
I did not know Claudia knew all the words to “Naive Melody”, because I did not. But she must be listening to it on her own.
Around the end of November 2017, I offered to be the Dungeon Master for a Dungeons & Dragons group comprised of local and homeschooled children. While I had never played D&D before, I had long been interested in D&D culture and gladly accepted, and set forth on reading loads of articles packed with tips, and watching videos, and trying to figure out how to play D&D, and how to be a DM. I had to find out What IS D&D?
I was familiar with its RPG descendants – things like Skyrim, Fire Emblem, and Legend of Zelda. I had grown up playing video games that relied on mechanics created for D&D. I grew up reading, listening and watching Tolkien and other high fantasy works. I was already connected to the world, and so while having never once played D&D, I had long been interested & appreciative of the world and its surrounding culture.
I decided to take this on and set out on my first quest: to figure out what D&D is. I began reading lots and watching videos, and messaging one of the popular Youtubers whose series on the subject was really helpful for me – he advised me about which of the official manuals were worth getting starting out, and in what order; Amber & the kids got them for me as early Christmas gifts & I was able to delve further into understanding the game.
For anyone who may not know explicitly, D&D is a storytelling collaboration by a group, wherein the characters role-play certain characters, while the Dungeon Master or game master mediates events and circumstances outside of the characters control (the setting, enemies, other allies, etc). Dice are used in D&D to allow for some measure of chance to govern the events and outcomes – does the attack hit? Do enemies ambush you in the night? Do you successfully jump over that pit? The skill set of a character impacts those chances through a set of modifiers to relevant situations (+5 stealth, +3 perception, -1 persuasion, etc).
Great! A storytelling collaboration. But. I am autistic & don’t improvise stories well. And I don’t have any experience role-playing characters (outside of Parade of Spirits, I suppose). How to I create a mental picture of a scene? How do I communicate that when I don’t know if they understand all the important details? I found a lot of opinions about these things online, and in the Player Handbook, but ultimately the biggest advice I received was that it will begin to make sense after we have gotten started with the 5e Starter Set module: Lost Mine of Phandelver. I was reminded that I did not need to know every little rule in the books either – to make a decision and look it up later so the game moves forward.
The first session I ended up having to pretend to be a goblin being interrogated, and during the second session I re-enacted the foamy latte scene from Zoolander with a high-ranking bugbear and his goblin servant after they worked out a way to make a steep climb easier for the whole party (a weighted rope, go figure) – YAY.
D&D = Reinforcement to math skills
D&D = Practice solving problems & hilarious spit takes
During the fourth session, I found out that kids don’t know what to say when they enter a business – they actually have to be greeted and asked a question. After a few NPC (non-player characters: anyone they might meet in the world or talk to that isn’t played by a fellow player at the table) encounters I understood that if I initiate with them in role-play — (after describing the setting). Ex: “Welcome to Stonehill Inn. I am Toblen. Can we get you something to eat, or maybe you need a room?”– that the kids can respond in a natural way.
So D&D = Real-world social skills practice, too.
The fifth session was entirely social, and opened the way to multiple quest options being opened up, which creates its own challenges – well do we drop everything immediately, or maybe come back to this? Do we keep talking to people in the town? This mission amounts to five days travel – would I really do that on a whim for a stranger? – I realized that as the DM I needed to help guide them out of this “analysis paralysis” (this term is used in reference to one of my own executive functioning challenges related to autism), giving optional advice about what to do next if they do not figure it out themselves. (As it turns out, leaving town for a 5 day roundtrip is not really the most practical thing do in the middle of your first afternoon back from being on the road for the last 3 days).
D&D = Supported-Decision Making.
The sixth session saw an even bigger jump in role-playing – also in social encounters – but with specific recognition of what individual characters would know, rather than what they knew as players. They had decided immediately that they would follow up on a certain plot point by talking to a character’s aunt & cousin, and C decided that some of the party should make a brief stop to speak with a shop owner that they had heard rumors about. This allowed for those three characters to have a distinct conversation from the other set of characters, and vice versa, and to later exchange information about the encounters (even though the players had been sitting at the same table). In the end, we were regaled with an impromptu a capella performance (in real life) over an in-game meal of bread & lamb chili.
D&D = Agency.
D&D = Empathic Cognition.
D&D = Respect for the relationship between guests and hosts.
Recently we had our 7th session. B was occupied so a subset of the characters did go on a separate journey from what had been planned. Aside from all the improvisation with what characters say, it was an opportunity for me to improvise encounters, including one in which they used a small bit of reconnaissance before deciding to intercede and save a commoner in trouble, thereby gaining this man’s trust and respect. During a nighttime rest, they were visited by a goblin couple who wanted to see if they were safe and ok, and who warned them about the woods – not everyone that looks like something you have fought has to be an enemy. As they handed over a comb to the banshee who owned it while alive – surprising even to me who was role-playing & improvising the character – sometimes an unrequested gift can be painful. The characters may just exist on sheets of paper, but their reactions – the feelings and emotions – can be felt, and not just played.
D&D = Helping strangers without any expectation of tangible gain.
D&D = Not judging people by their race or shooting because they are incidentally in the ‘wrong’ place.
D&D = Finding that the past can be hard for others in ways you would not necessarily expect.
I know other people have written things about the merits of D&D for autists, teens, and anyone really, such as increasing confidence during peer interactions, and how to navigate group dynamics, but my own experience, over just this handful of sessions, is that – even just at the surface – there is a lot to gain by sitting down and pretending to be your level 2 elf rogue or human fighter, or by pretending to be a shopkeeper, the innkeeper, and an aged veteran. The big chested, pushover mayor, and the freed farmer whose only concern is his family’s safety. The concerned citizens who are just two goblins passing through. The recipient of a gift who concedes to question from her guests, in spite of the pain it brings, but not before revealing as much.
“This … This … Why do you bring me this? It is death for the foolish mortals that come to this place. Why have you come?”
“We wished to return this to you – Sister Garaele recovered it for you”
“Surely not just to return it. What did you want of me? What are you here to ask? Just ask your question and go. Ask – and go.”
“We just – “
“Ask – and go.”
I got to spend my birthday morning taking part in the Strength Source Project with artist and photographer (and Parade of Spirits mother) Carrie Biegler. Follow the link above to read many profiles of many strong woman, and beautiful portraits. I have posted Carrie’s photo of me, and my text for the project, below.
“I was raised by an emotionally and physically abusive father and a mother who did nothing to stop him. Although I tried to keep my father in my life through adulthood — he also had Asperger’s Syndrome, and it seemed clearer the older he got, that his elder care was going to be challenging and I felt he would need my help — it became impossible to manage or tolerate his behavior. When my husband and I adopted our first child, we decided that my father would no longer be a part of our, or our children’s, lives.
Because I had always counted strongly on people who were not my blood relations — and because the people who were my blood relations had failed me — I spent a lot of time thinking about what families were, and where the boundaries for families began and ended. After adopting our second child, I understood that our family was “complete”, but I also started to question this idea of “completion”: why was this the goal? Why was everyone in a rush to get there? Was I ever going to love anyone new again, now that I had these babies? Why were households set up like bunkers, where two adults — and the children that they had, in the majority of cases, created with their own bodies — considered “family units”?
Shortly after turning 40, I began to envision myself — not intentionally, but just out of the blue — as being at the very beginning of coming into my full strength as a human. I had no idea what it was that I thought I was going to do, and had no big plan, but just had a picture of myself in my head, and knew, that when I hit the height of my powers, I would have mostly grey hair. I just felt this sense of acceleration.
Not a single thing that I have accomplished since 2011 and take pride in is anything that, if you had told me about it in 2008, would have been something I was prepared to do. I co-founded and developed a yearly festival and parade in Philadelphia (originally called Krampuslauf Philadelphia, now Parade of Spirits, Liberty Lands) that is now in its seventh yearly run. I was asked to speak at Oxford University about it last year. In 2013, we invited a fifth person to join our family and household. He is now 24, is studying neuroscience at Drexel’s medical school and will be an honoree of Drexel’s “40 Under 40” award this year. He, like my father, has Asperger’s Syndrome. My father died of dementia in 2016. I began homeschooling my children six weeks later. Earlier this year, with some of the money from my father’s estate, I created a scholarship fund for School of Rock Philadelphia, where my son and daughter are students.
I have begun to redefine community and family in my own life, but I doubt I’m anywhere close to stopping. And my grey is coming in so much slower than I would have expected by 48! Working without a plan — giving what I have to give, freely, keeping myself open to saying YES, and embracing a love of folklore and nighttime parades that I didn’t know I ever had, have changed the last seven years of my life dramatically. I’m going to continue to trust whatever has brought me this far to continue to cut away the dead weight in my life and allow me to continue helping to create paths for others.”
I love you and I am thankful to have you for a friend, and as family. I am amazed by your goals & creative visions. I had limited experiences growing up to really be creative, but with you I have been able to participate in a creative community you created, and to work with you through a multitude of projects, from the parade through to things that are just exploratory.
That vision extends into educating the kids, and I am impressed and baffled by things you come up with for them. This is not just a benefit of homeschooling in general here, I know that this is because of who You are. As a student myself I greatly appreciate seeing how the activities for them so often center around their interests, and their passions. I couldn’t think of anyway better to educate, nor is there anyone better than you – I wouls have loved to be your student at their age.. I feel honored to get to co-teach with you, and recognize also how you bring our interests into the fold of teaching/learning as well. My own experience learning chemistry alone was undoubtedly formative, and it is a blessing to work with you to be part of that experience for them.
You are wonderful and I love you.
Happy Birthday Amber.
Yesterday afternoon I had a series of seizures, including the wandering, ambulatory kind, which I have had for decades. A number of hours whittled down to only a few semi-cognizant moments.
During some of these moments, I realized that typing letters of names into my phone was not retrieving the numbers — therefore I could not call anybody (I do not have a single phone number memorized other than my own). I did realize that I could make an SOS Facebook post — and point out that from what I could tell, I was SEEING Philadelphia, which meant I was not IN Philadelphia. Which was surprising, but since I was aware I was also not going to know about it again in a moment or two, didn’t scare me.
I know very few people with the type of seizure disorder I have. One I only met on Facebook, and our conversations around what post-ictal periods felt like, and what it feels like to “wake up” in a different place, and — possibly the worst — the feeling when you know it is coming and this urge to not leave — not escape — but to find the edge of space starts taking over your brain, and you get your ID and text someone — were some of the most freeing conversations I ever had. It happened to someone else. This woman — also an adoptive mom — recently posted video of herself having a seizure on social media — and watching it was immensely freeing and familiar. It was okay to be me. If it was okay to be her, it was okay to be me.
Last night, it was not okay to be me. I was found in Camden, New Jersey, unconscious and convulsing. My body temperature was below 94.
Prior to this, during some periods of lucidity, I would be terrified by the number of very terse-looking texts coming through my phone. Lots of question marks. And periods. Everyone knows a period is bad news in a text. It appeared that everyone I knew was angry at me. (I am now completely aware that that is not the case, and am frankly touched by how virtually everyone I knew seemed aware of the confusion and lack of agency I was experiencing.)
There finally came one moment when a text came through at a second where I was able to reply to it, rather than having to choose one of the 48 that I’d missed. It was my next door neighbor, who, between himself and I, there has never been any shame. (I remember a text exchange between us from a few years ago: “Sorry about all the vacuuming last night.” “I didn’t hear a thing.” “Good. Because it was actually yelling.” )
My neighbor texted me, and my brain, which was so scrambled at that point — and burning up with heat (does anyone tell you that about hypothermia?) — knew that it should “reply”. That was easier than initiating with one of the perceived “angry” people.
I told my friend where I was (to the best of my ability, which was clearly still not entirely satisfactory to him, which made me feel a brief frenzy of terror) and told him what I knew about what was happening. I was not in a full-care facility, and was not going to be there for long.
I was able to be home by about one in the morning. I had been able to text more consistently on my way back into Philly, and kids had stayed in touch with me via their iPads. This was very empowering to them.
(Claudia drew a portrait of me.)
The kids had been pretty stressed out for the past week, as had I, with the regular pressures of life and holiday overflow. When they expressed some of that — via text, as we chatted to “stay together” — I was happier to be the person with hypothermia than to be anyone whose behavior had disappointed my children. My kids have come to have very high standards for truth, transparency, the ability to admit wrongdoing, and just all-around decent behavior.
Claudia said today that this last week was the worst week of her life. That is pretty hard to hear, as a mother.
She was also able to tell me that, which never, ever would have been true of me at her age — not to my own mother, nor to anyone.
Hypothermia is sort of like kidney stones. You have it one minute and the next minute, technically, you don’t “have it” anymore. This does not mean you are okay. The nerve pain and inability to let water or a cloth touch my skin — nothing but Aquaphor has yet been put on it — left me feeling pretty skanky today. This morning I watched the kids play a board game they got for Christmas. I saw them get caught up in it, and temporarily forget that the night before had been so hard. Tucker set them up with their new Blue Yeti vocal mike, and Garage Band.
I was able to go to a meeting that the kids and I had, about the Rock Band By Day homeschool program at Philadelphia School of Rock, and about the recently founded Sound and Vision Project. On our way home in the Uber, the kids saw a billboard for the new television series version of “She’s Gotta Have It”. Our driver was tickled by this. When I said that the one Spike Lee movie the kids had seen was “Do The Right Thing”, they surprised us all by recounting detailed sections of dialogue, character names, actions … and then Claudia referred to Señor Love Daddy as “the podcaster”.
I almost fell out of the car. Tucker and our driver were laughing so hard too. Things felt pretty normal again. As normal as they get.
For a year I have been part of a Facebook group for homeschooling parents who have chronic illnesses. Every day I read about mothers who are having a “good enough” day by watching documentaries on Netflix. Or are proud to have gotten dressed that day and see the relief in their kids’ eyes when they manage it. I know these days.
I am homeschooling two almost-ten-year-olds, and anyone will tell you how much a teacher should really earn. And my kids are getting more than a fantastic teacher. (That would be Tucker.) They’re getting me. (Who’s… an interesting teacher.) In addition to homeschooling my kids, I have founded and help run an absolutely magical public event every December, attended by hundreds. (Did it for the seventh time, this past month. Thought it might kill me, but it was so beautiful it would have been worth it). As referenced above, I’ve used part of my inheritance from my father’s death to restart a scholarship program at School of Rock Philadelphia, a place I love so much you’d think I invented it.
Last September, I ate a meal with a friend, and was telling him about other projects I was trying to remain involved with, and which were expanding. He smiled and said, “So tell me Clarice. Have the lambs stopped screaming?”
There is only one other time in my life I can think of where I was so dumbfounded that I had to ask for someone to explain to me what they had just said. (The other time was with Tucker’s father, one of the few people in the world that I’m absolutely sure is smarter than me.) I really did not know if I was being picked on, insulted, made fun of — I understood the reference — my son is such a Stop Making Sense freak (even if he loves me more), I can’t wait for him to see Silence of the Lambs — but I had no idea what was being said to me. Or about me. I had to ask.
I understand that my interest in some of Ben’s business ventures has been to offer a balance of culture to the business side. I named and found the logo designer for the business that pays our bills. It was my idea to hire people on the autism spectrum at fatCoffee, because autistic culture and autistic people have been part of the framework of my life literally since my birth. And, separate from that, it has always been impossible for me to avoid offering advice on how to make anything — packaging, a shelf, a website — look better, read better, be understood better. I am an excellent content creator, and I know it. I use social media very well. I almost can’t stop myself.
It is my perceived inability to stop myself in these situations that leads to expectations that I actually want to do it at all. Thinking through all the suggestions I make is actually considerable mental labor, and the kind of consulting that people not only get paid to do, but contract to do at all to begin with. And this happens in a number of scenarios in my life; I stumble into a lot of my mental labor, and do it compulsively, and it is perceived — conveniently — that I wanted to do it at all. But until my friend asked me if the lambs had stopped screaming, I didn’t know why I did it.
I’m glad fatCoffee employs people on the spectrum. But I don’t work there. I’m not particularly interested in the product. Moving the means of production out of West Philly to our block, where there is planned to also be a retail store, has not been that much fun. It is hard enough for me to go outside and walk to the Acme. Now I have to do it with five people stopping me asking when the store will open and giving me suggestions as to what it should carry.
As we wrapped up Christmas, and Parade season, and show season… even prior to last night’s possible tragedy, I was aware — finally — that I had to do better for myself. That I had to take some irons out of the fire. And I knew, with urgency and complete assurance, what was staying: homeschooling, Parade of Spirits, Liberty Lands, and Sound and Vision Project.
All other projects, with which I “helped”, or was identified implicitly — had to go.
I wanted them to go.
They never did make the lambs stop screaming.
I have spent four years in fury since Tucker’s autism diagnosis, disgusted that not one sibling, nor his living parent, ever acknowledge not only that Tuck existed as an autistic person, but that he existed as anyone but a placemarker for what they had assigned him to be — at all.
That was unconscionable, but it isn’t my problem. And while it is nice that there is now a local business that chooses to hire people on the spectrum, specifically because we were angry, and panicked, and could not believe a family would treat someone that way, and we trying to make those lambs stop screaming — it isn’t my business.
The lambs are now very much in the background for me. Because that’s where they are for Tuck. They will never entirely silence. But there isn’t anything I have to do about them. Tucker is healthy, happy, successful, funny, and thriving. I don’t have to fight for him.
I do have to put down some of what I have forged for that fight. For my own sake. For my kids’ sake. But really — for my sake. Not just having to do with autism, or lambs — anything. Anything that takes away my ability to lay in bed and read an hour’s worth of crappy memes a night. Because I have given too many of those hours away, giving too much of my self away.
I have made my “little” list of what I want to pour myself into, and it is plenty.
And I have been teaching myself — subconsciously, it seems — to not offer the Idea, the Motivation, the Encouragment — every time something pops into my head. It has been an interesting few months of learning about different people, and how and why they run their very different businesses and do what they do. The most important thing I found? Much is smoke and mirrors. But even smoke and mirrors still burn energy constantly.
I am not the refinery’s fire. Oh, God, the things I’ve found in the last six months that I can just say NO to now. I am not an endless resource. And nothing I have to give is “just” an opinion or something that someone will “run by me” with the hope that I’ll give them insight or show them the hole they didn’t see. Those insights and opinions have value. I always knew that. What I didn’t know: they have value to me when I save them for something I care about more. This is the truth of emotional labor.
I am lucky to be alive today. This morning I was trying to answer every message I had received, and for every one I answered, two new ones came. I am lucky that I am as loved as I am, and I see that what has begun in 2017 will carry over, even stronger, and making me even stronger, into 2018.
Believe me when I say there are going to be some angry and surprised people who don’t think they’ve “deserved” to “lose” what they’ve been getting for free for too long. Thankfully, it’s not a long list, but it’s certainly longer than one, and they’re getting dealt with pretty much at once. Some of them have moved on with it already. Some have yet to get the news. Some think they are rebounding back with a Plan B that I can’t refuse.
And in all the places that you do and don’t see me, know that it is, more likely than ever, very much by my own choice.
Like when it’s Thanksgiving Day and we’ve completely done away with any convention and embraced the Exactly What We Feel Like and are eating tons of Trader Joe’s h’ors d’ouvres while watching the Macy’s Parade on TV and waiting for the dog show to start and knowing there will be turkey later but everyone will have eaten so many side dishes including Tucker’s collards and yeast gravy, and Béla’s giant olive tray, that hardly any turkey will be touched at all.
Many MST3K episodes will be watched.
For a little video that straddles the holiday equator between Halloween and Christmas, here are Béla and Claudia — and even Tucker (in a Frank Zappa halloween costume in the graveyard with the trap goth band…) in South SillyCAM Episode Four.