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.