THIS MUST BE THE PLACE

 

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.

Home, is where I want to be
But I guess I’m already there
I come home, she lifted up her wings
I guess that this must be the place
I can’t tell one from the other
I find you, or you find me?
There was a time before we were born
If someone asks, this is where I’ll be
THIS MUST BE THE PLACE