DO THE RIGHT THING

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.

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(Claudia drew a portrait of me.)

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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.

Watch.

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.

 

DO THE RIGHT THING

SOMETIMES IT’S JUST FUN HERE

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.

SOMETIMES IT’S JUST FUN HERE

THIS IS THE DAY OF THE EXPANDING MAN

I woke up on September 3rd to the news of Walter Becker’s death. Steely Dan had been a huge part of my childhood, and of my father’s identity. As a kid, riding in the car with my dad, I was ordered to listen to the lyrics to Steely Dan songs as though they were important lectures or sermons.I can identify the single note in “Do It Again” during which Donald Fagen became visible, entering the stage, the first time we saw Steely Dan live, and can remember my dad whooping with admiration.

It had been a strange coincidence when Leon Russell died so shortly after my dad did, but that death was also instrumental in processing my father’s death. Leon’s death had guided me through the actual sadness and loss of grieving that my father’s death had not provided. I didn’t need Walter Becker’s death for anything; it was an unacceptable loss.

It took me a few hours to realize we had, intentionally, decided NOT to go to the last concert Steely Dan had had here (which was with Elvis Costello. I really can’t believe we missed this.) That was it; I had blown it; I had made a Steely Dan fan out of Tucker and we were never going to see them live. Tucker said that having missed that concert was pretty much the first thing he had thought of when he heard about Becker’s death. I felt awful.

The death of Grant Hart was a sucker punch and the loss of the voice that I had clung to almost exclusively in 1990, the year that my parents had separated. I was able to spend that day with musichead friends, to whom I did not have to explain my disbelief and sense of loss, but September 2017 was turning into a really long month. And we were well into it before I remembered that the actual first anniversary of my dad’s death was also on the calendar.

Last year, we had had our pet rat, Pocket, put to sleep on September 13th, because we were sure he was going to die soon and we were afraid he would do it on Béla’s birthday. But I had not equated the anniversary of my dad’s death with being “a week after Béla’s birthday”, because on Béla’s birthday last year, we still had no idea my father was so close to death. Once I recognized that the date was coming, I started to feel it. In the economical euphemism used by Tuck’s twin years ago, I picked up a “speed wobble”, my coping mechanisms steadily breaking away.

And somehow, Béla’s birthday on Friday was probably one of the most enjoyable kid birthdays I have experienced between the two of my children. The pressure I’d felt to be “okay” for his birthday was completely removed the night before by a friend who reassured me that no matter what I did or didn’t feel up to, the kid would get over it and I still needed to take care of myself. This was enormously helpful. We got up late (we often get up pretty late on homeschool days), and decided that even though Tuck and Ben were out to work and school, Béla would open his “big” gift right then: it was a red Yamaha keytar, and he loved it. We played with a new-to-us modelling compound called Sugru. We listened to a lot of amateur keytar-playing. Ben picked up Claudia so she could follow through on a midday shopping trip for her brother, coming home with something with which he was delighted, and none of us would have known to get him. Ben took the kids plus one good friend to Dave and Buster’s for about three hours in the early evening — something that would have been misery for Tucker and for me, and we weren’t missed. We had ice cream cake at home that night, no candles, no singing — Béla-style. (And exactly like my dad.) It was a good day.

We have, very slowly, since the beginning of the summer, been making changes to the house. Two bedrooms are switching owners, two multipurpose rooms are switching purposes. New beds, hopefully good enough to make it to the teen years, have been ordered, and in Claudia’s case, assembled. I have been able to fund much of this with the money from the sale of my father’s home in Bucks County. Doing brain transplants in the rooms of your own house can be harder than moving into a new house altogether. There are no empty rooms. It’s like a sliding-tile puzzle. And it has been this way for months, with various kids sleeping on various floors waiting for the paint fumes to subside, insisting on having the soundtrack to Hamilton playing all night long. Everyone and everything has felt a little displaced.

But in the last month, I’ve been socializing more than I have in a year — since my dad died, since we began homeschooling — and for that I am really grateful. I am still far from up to speed on self-care but I’m working on it, and not punishing myself too much for not doing the best job. The kids are doing great educationally and having a lot of fun, and have made really nice new friends. Grad school for Tucker has been a huge transition and I miss him being at main campus, and miss his faculty and advisors. He says that the med school has a “Drexel vibe” and is happy.

On September 3rd, the day that Walter Becker died, Ben and I had driven the kids to Germantown for what is, this fall, a Sunday full of homeschool activities. Because I felt such a seismic shift due to Becker’s death,  I took two direct actions towards life changes for myself that day. One is likely to be the most significant long-term change for our family since Tucker became a part of our household. It continues to unfold with the same sense of slightly-out-of-control Fate that Tuck’s arrival did, and I’m just riding it. The other one, I have to get to work on myself. It is the first anniversary of my father’s death, and that means it is basically Halloween season, which means it’s also pre-Every Favorite Holiday season, and Parade season, and that gives me a lot to look forward to.

THIS IS THE DAY OF THE EXPANDING MAN

LET’S SCIENCE

Students in the College of Medicine had to, during orientation, have their portraits taken in lab coats. While most used a lab coat from the school as a loaner for the picture, Tucker brought a lab coat with him; my father’s.

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I did not expect to love the picture so much. And I really do. It does exactly what pictures are supposed to do — it documents the growth and progress that have actually etched themselves into his face.

As far as I know, it’s literally just an ID photo. They had changed the date of his session on him at the last minute, and he had to rush home and shave; circumstances for a good photo were not prime.

But he just looks so ready.

I texted the image to Claudia today after Tuck had sent it to me; her commentary is as good as the picture itself.

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I’m sure my dad would just be happy his lab coat was getting use by someone who wanted to be in it.

 

LET’S SCIENCE

Bare Necessities

Today marks the day the 4th anniversary of when I ‘came out of the box’ – the day on which I began to have a drastic shift in emotional awareness, clarity, and a lasting change in my affect. I could not have identified that the box was there beforehand, but even relative strangers to me at that time had recognized that something big had shifted in me, and I was no longer as ‘cold’ & ‘aloof’. As time has unfolded since, I have gained perspective about the box, what it was & why it got there.

 

For no reason in particular a song from my childhood popped into my head recently. It was a triplet from the Bare Necessities in the animated version of The Jungle Book.

Look for the bare necessities
The simple bare necessities
Forget about your worries and your strife

The song essentially is Baloo’s way of guiding Mowgli toward accepting poor circumstances and to be more open about going with the flow. It is a familiar sort of notion to me, one that I had undoubtedly carried a long time.

This notion – of passive acceptance of shitty situations – is a significant part of the coping mechanisms that created the box.

I had ‘accepted’ my mother’s dying and death in real time, at the expense of really dealing with anything for years. But no bereavement counseling was provided anyway, and I continued on from that experience in an environment where addressing the way I felt would have led to nothing. Denial and revisionism kept the truth at bay, though the closest it probably had come was when one brother had remarked that “She was a very complex person” in response to my sister’s feelings.

In the face of the immediate, physical bigger struggles – food insecurity, late rent, utilities being shut off – there wasn’t a space for dealing with death. Moving houses. New school. So on. Suppressing those other feelings, and entering a sort of emotional maroonment, was how the box manifested. To cope with deficiency in my daily life, I might convince myself that I needed less. My box filtered out all but the bare necessities, and sometimes even more.

But today is the anniversary of when I shed the box. That day when, having become vested in a new, nurturing & secure home environment, and faced with a challenging situation that called on me to be emotionally supportive in a way I had not ever been called to, the box lifted. The compacted layers of suppressed feelings slowly came loose over the last few years, but within the first couple days at least I had felt really happy. I was connected and in touch, and people in the house thought maybe something was wrong with me. I hadn’t gotten out of the box on my own, but precisely because my best friend needed me.

These days I am a lot more interested in bear necessities. And sloths 🙂

Bare Necessities

GRADUATE/STUDENT

I expected myself to have come up with something to say by now about the fact that Tucker graduated from college in June, but so much happened almost immediately following it (a bad concussion for Béla, a week in Woodstock, NY for everybody), that I never got to it.

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Tucker graduated with Honors with Distinction, and was the only member of his elite graduating class to graduate Summa Cum Laude.

We are particularly grateful to Tuck’s undergraduate advisor in the Custom-Designed Major Program of the Pennoni Honors College, Kevin Egan. That FERPA waiver wasn’t for nothing, and between the applications to graduate programs and the last term at Drexel, not to mention his Senior Capstone Project some of those classic ASD executive function shortcomings were kicking in for Tuck, and Ben was checking in with his faculty mentors, with some very specific checklists, pretty regularly. As you can see Kevin’s big smile in the photo above, so can you recognize it in silhouetted profile at Tuck’s Capstone presentation. His support is one of the many things we will miss about Drexel’s undergraduate program. We could not be happier that Tucker is staying within the Drexel system; this is a place where he is understood and valued.

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Tuck’s graduation events were spread out over two days and he kept things — from his guests, to what graduation-related decor I was allowed to put in our front window, to what he wanted to do after the ceremony (which was: get a shrimp cocktail tray, like one would get for a party, but not go to or have a party, and just eat the shrimp at home) — the way he wanted them.

 

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More valuable than the medals or accolades is the fact that in the month since he graduated, Tuck’s had no dark circles under his eyes, and has had literally glowing skin — he is less stressed, and has had more free time, than in the last four years. In Woodstock he was able to spend hours upon hours doing jigsaw and logic puzzles.

He begins in the neurorobotics lab that he will be starting his first rotation in for grad school this week. I will miss having him at home so much. We all will.

We tried to take his ID photos for grad school today.

We will try that again tomorrow.

GRADUATE/STUDENT