The Hillhouse

My son has Achromatopsia. It’s a congential disorder of the retina, which is to say he’s had it since birth, and will have it for the rest of his life. The best metaphor I can find to describe Achromatopsia is this: his eyes have the hardware to see, but he’s missing the software, or the app. Essentially, he is missing a protein in his retina which delivers the visual information from the cone cells to the brain. I do realize that my explanation may be rather simplistic, and those who’ve spent hours upon hours learning about this might find fault with my presentation or correct my understanding about it, yet for our intents and purposes the metaphor works well. All I know is that his experience of the world is much different from ours, and as his mother, his number one advocate, I am always mindful of it. Thankfully, when the technology to deliver the missing protein to his eye is perfected, there is hope that he will one day have the possibility of correcting it.

Elihu is considered legally blind, which is a strange, nether-world in which to live. Yes, he can see. No, he cannot see color – any color at all. Most people are amazed at this fact alone – and in order to demystify it, I usually tell kids to take the color out of there TVs in order to see the world as he does. For the over 30 set I just tell them to envision black and white films, or perhaps even and Ansel Adams photograph. Yet that’s not the end of it. Elihu sees very little detail beyond 20 feet. He also is virtually blinded by light and must wear dark red glasses in order to function. Why red? Because that is the spectrum that sops up most of the light for him. Since he can’t distinguish color, the fact that the lenses are red means nothing besides the comfort they afford him. Essentially, he sees using only rod cells – the ones that kick into gear for us at twilight. The glasses he wears must dim light down to that sort of level. And as those who’ve studied candle power can attest – the sun is not just a whole lot brighter than artificial light, but rather exponentially brighter, so finding ‘comfort’ in outside light is a tall order.

Elihu can’t recognize friends in the hall at school when they call to him. He can’t always follow kids running in the playground. Depth perception is tricky for him; he’s been tripping over curbs all his life. However, as with anything, he’s become adept at living with it, and the older he gets the fewer things he’s surprised by. He’s learned to be gracious when people approach him. He’s learned in part from mom and dad, who being performers are often greeted by people whom they can’t always recall meeting. Being polite is all that’s called for. “I’m sorry, I’m really bad with names, can you please tell me your name again?” or “I’m sorry, can you please tell me again how we know each other?” In his case, I’m encouraging him to tell folks he can’t quite make them out until they’re fairly close up, so they know he’s not being aloof. Elihu is now beginning to feel fairly self-conscious about being different (like he needed a retinal problem to set him apart!) and so he’s going to face some challenges in the next few years. I just keep telling him that a sense of humor helps. This he knows well.

There is an island in the middle of the Pacific – it’s in the Federated States of Micronesia to be more specific – called Pingelap, on which many of the current residents are Achromats. Apparently, hundreds of years ago several of Captain Cook’s crew, shipwrecked on the tiny island, carried the recessive gene for Achromatopsia. They stayed on the island to live, to raise families and ultimately created a gene pool heavily populated with the gene for A. Elihu and I have a dream to one day visit this place, and bring with us dark glasses for all the residents who need them. I cannot imagine having Achromatopsia and living on a sun-drenched island, and it makes my heart lift to think of the relief we might one day bring to them.

John Kay of Steppenwolf is an Acrhromat. (Check out some pictures of them and note John’s dark glasses. Not a costume choice, but a necessity.) I think it’s absolutely ironic that the man who penned the iconic “Born To Be Wild” doesn’t even have a driver’s license. It’s even more ironic that today he produces nature videos. I’ve heard his wife does the color correction for him. This always makes me smile. Go John! Go Elihu! Go As!

Even though Achromatopsia will not prevent my son from realizing his full potential, it is still my single greatest hope that one day Elihu will have the option to choose for himself whether or not to change his vision. Ultimately, it will something that only he can choose for himself. ‘Til that time, we have many adventures awaiting…

A friend in Chicago recently told me that there was a Scottish band by the name of Old Blind Dogs heading my way, and that they’d be at Caffe Lena soon. He advised we go, and asked we remember him to the band as the bouzouki player they jammed with in Flossmoor the day Bin Laden got knocked off. Ok, it was an introduction of sorts I suppose. The day had arrived, yet now I was losing my resolve to go. It seemed too expensive for us, plus I was rather pooped from my long day. I asked Elihu how he felt. I cited the pros and cons. I asked him on a 1 to 10 scale how he felt. He said 8. Then we pulled them up on you tube and listened. “Oh yeah, I wanna go” he said. “We gotta go, it’s a 10 now.” “It’s going to cost a lot” I warned, reminding him of our plans to build a new coop. “But I’ll always remember this!” He got me. That’s always been my ultimate gauge for making a decision. He was probably right. So I was off to clean up.

Caffe Lena is a tiny coffee house at the top of a creaky flight of stairs in Saratoga Springs which has been there over 50 years now. As a child I knew Lena, who was old by then, or at least to my young eyes looked as old and whiskered as a witch (I suppose everyone over 40 appeared this way). She was always kind to me when my parents would drop me off to hear a show. She’d wait at the top of the stairs and wave down to my folks, letting them know she’d keep watch over me. There’s a folk-art sort of portrait of Bob Dylan at the top of the stairs done on a piece of plywood, made on the occasion of his appearance there in 1960. The walls of the narrow downstairs hall are covered in ancient handbills of past performances under a thick, shiny lacquer. The bathrooms are tidy and their walls covered with happy graffiti. Elihu himself wrote in red sharpie on the night of his performance there last year. He had drawn a woodpecker climbing up the wall. Beside it he wrote “Elihu’s first open mic – 3/11/10” in a six-year old’s lettering. It was as much a right of passage for me as it was for him.

This time, Elihu counted the stairs as we creaked our way up towards the cozy room. I was ready to pay the steep admission, yet when they saw his size, the woman kindly offered to charge only $5 for his ticket. A nice way to start the night. Also, there were two unreserved seats right next to the drummer’s side of the stage. Wow. We’d gotten there early enough to find good seats, yet these were better than I’d hoped. It wasn’t a big place, yet Elihu can’t see much detail past ten feet, and so a table’s distance away can make a big difference in his experience. We were set!

The group’s bassist had been detained in Minneapolis by customs. I thought it a shame, both for the guy himself, and for the remaining trio. They’d have to fill it all up by themselves. I needn’t have worried. The three musicians created so much sound that the poor fellow was hardly missed. The drummer had a small setup; a large djembe sat before him, a deep snare to his left, then a high hat, a kick drum, another mounted djembe and two cymbals, one with a chain draped over it for sizzle. He also played a small talking drum which he could hold as he played. By mid-set Elihu was just not able to stop playing on the table. Even though our table partners seemed easy-going enough, I was worried that I might be the mom who thinks her kid’s so wonderful that rules don’t apply to him. “How bout just one finger? Like this.” I tapped with my index fingers on the edge of the table. Good solution, for a short while. Their energy was just too all-consuming. (At one point in a moment of inspiration he grabbed my arm and shouted in my ear “Mommy, I’m going to busk and make $25 and I’m going to buy myself a pair of brushes tomorrow!) The scene reminded me of years ago, when I’d go to shows with an egg shaker in my purse because sooner or later the music would become too compelling to resist, and I’d simply have to join in on something. Our neighbors were kind about it, but I was still unsure whether Elihu’s enthusiasm was too much. It was a great set, yet in spite of that Elihu was beginning to feel tired and he asked if we could go soon. I tried to distract him by calling his attention to something in the arrangement so that he’d forget about wanting to go; it was the first time I’d heard live music in such a long time and I wanted to stay. We made it to the end of the set, and the band announced they’d take a couple minutes’ break. Elihu and I made our way out.

The place is small, and the drummer was right there. Elihu stood before him and thanked him. “Do you want to see the drums?” the fellow asked. No doubt he’d noticed Elihu’s interest. The two walked back to his setup and had a little session. The drummer showed him his talking drum, and encouraged Elihu to try. He tried it briefly, but I could tell he was jonesin to get at the monster djembe on stage. “Go on” the man said, smiling kindly. Elihu ran the whole way round the room to get on the stage, and when he got there he sat down and began to play. It was a very loud drum, and he was playing a little rushed and scattered. I leaned in to encourage him. “Just do your groove, honey, you know, your thing“. He took a breath, then began.

Elihu grooved hard. He made a couple intentional false stops. He had the audience. He started up again. Not too long. Just enough. He slammed his hands down together in a final woomp. There. That’s it. The place went up in shouts and applause. During the whole thing I just laughed and laughed. Even though I know what he has, and how he’s gotten better, it felt just wonderful to have a whole room of people share in it together. What a moment. As we were leaving, the drummer gave Elihu a CD. I’d even considered buying one – something I’d seldom do – yet now here was another gift. Amazing. As I chatted my goodbyes to some folks at the ticket table, I noticed Elihu making small talk with the bagpiper – and the two parted laughing like old comrades. We smiled all the way down the stairs and onto the street.

A warm, weekend night in Saratoga is almost always a party. And so it was tonight. Before we’d gone to the show, we’d set an old dinner roll on the sidewalk outside to feed the sparrows with and found it still waiting for us. So we picked it up and headed around the corner into the alley in search of some birds. Hattie’s Chicken Shack was booming. People filled the restaurant. The old screen door creaked open and thwacked closed behind the crowds as they exited. We walked around to the back of the restaurant, hoping to find a late-night sparrow waiting for handouts, but it was too dark, too noisy, too Saratoga. There was a garden in the back of the place that was also full of people. The windows to the kitchen were open and faced the alley. “Look at all those guys workin so hard! They’re still slammed!” I said as I pointed to the chefs bent over stainless tables. One saw us and smiled. “Did you eat here tonight?” he asked. “Naw, a little pricey for us” I answered, smiling back. Truly, these days, it was a different Hattie’s. It wasn’t always so upscale; I could remember many decades ago when Hattie herself stood guard. Her ancient husband, a slight, bald black man was always in attendance, a towel draped over his arm. He was the epitome of gracious service. Many summer nights the restaurant was populated by only a few tables. The chicken was always the most delicious I’d ever had, anywhere. The cook shouted down to us from his window. “Want some chicken? Wait – just wait a second” he ducked back into the kitchen and returned with two drumsticks in his tongs, which he reached out the open window and handed to me. “They’re really hot, watch out”. I thanked him with a huge smile and a look of amazement. As I juggled the hot chicken, Elihu ran into a neighboring bar and came out with a pile of napkins. We made our way across the street to Ben & Jerry’s where they have large, freed-standing swinging seats for their patrons. Although it’s still a ‘new’ place in my mind, I realize that many local kids have grown up knowing this corner as if it’s always been here. My son will too. And so, it has become one of those defining little corners of the town. We sit to eat our chicken. We rock, we take in the perfect air. The sounds of bands come at us from distant bars. Bunches of big kids sit and check their phones. Couples walk by with their dogs. It’s a perfect night in town. We are in no hurry, and I wait for Elihu to have his fill. I don’t want to end tonight by telling him we have to go. We don’t.

But finally, it’s time. We get in the car, roll down the windows and begin to drive through the twinkling streets. We’ve brought along his djembe, and he plays it in the back seat as passersby look for the source of the sound. Soon we’re passing the mansions of North Broadway as we head out for the country roads. We put the CD in. It starts slow. “Where are the quarter notes?” Elihu asks. “There’s really no time yet, you can play what you like”. So he does. A freeform, expressive sort of playing. Then the groove begins. It fades up, and Elihu joins in. We are now winding through the dark on the last road to our house. The road twists and turns, it rises and dips. The music seems to grow with intensity as we come nearer to our home. Then we turn down the long driveway into the woods. When I bring the car to a stop, Elihu leans forward and gradually fades the track down to silence. We notice that Uncle Andrew has closed the chickens in their coop for us while we were out. It’s official, this night was perfect.