I need to get Elihu to bed soon – and not sure I’ll last much longer either, so while he sits beside me researching the rearing of triops on my Mac, I sit here on the PC making the quickest update possible. Must say, this day was absolutely fantastic.
With a backdrop of some Earl Hines on the radio we drove to the nursery to admire the flowering trees. Then some modern big band arrangements carried us to the highway, where we then made a foray into some Ornette Coleman. After a bit we turned back the clock to some super-old timey Chick Webb, which finally brought us to our destination: the New York State Police Aviation Hub. Woo hoo!
We were given a private, unrushed tour by a most generous man whose job it was to oversee the repair and maintenance of the state’s fleet. He even let Elihu sit in the pilot’s seat while he powered up the craft (electric dashboard-type systems only) and then guided Elihu through the controls. Wow.
After this visit we drove the long way home and stopped in on a local music store en route where we got Elihu a chain for his cymbal which he’d been wanting for a while. It creates a little sizzling sound – we’d tried to make our own without satisfactory results. Perfect. After a nice chat with the fellow there – who himself was a drummer and maker of drums as well (and who knew of Elihu’s father) we headed north through the driving spring rain.
We landed at the local mall, and enjoyed the closest thing to authentic middle eastern food to be had within a half hour’s drive. Then it was off to the kiosk that sold RC helicopters. Elihu had brought his own – purchased at that same stand – and after some time hanging around demonstrating his skills at handling the toy craft the proprietor was kind to allow Elihu to pilot three different models – including one that was over two feet long! The man was quite impressed with his ability. I was too; just last night he’d given me a turn at the controls and I was unable to keep it level and unmoving. It’s harder than it appears. Looks like I have a young aviator in the house.
We’ve come to the end of Elihu’s first week in the Waldorf School of Saratoga. It has been wonderful. He is more joyful than I’ve ever known him to be – if we overlook the brief over-tired episodes that have come before a bedtime or two. It’ll take us another week or so to fully get into our new rhythm, but it’s already underway, and it’s not the terribly difficult transition we’d thought it might be.
After Elihu’s third day, to my surprise and delight, he came home singing “Simple Gifts” and speaking in French. “I wonder if there really are outdoor markets with so many things for sale…” he mused aloud dreamily from the backseat after I’d picked him up from school. In his class they’d been learning about a French marketplace. I assured him that even in this modern time, there were still open-air markets all over the world, and yes of course, even in France. Places with tables full of fresh vegetables and bushels of brightly colored flowers. I recounted to him an early memory I had of the marche in Vevey, Switzerland that I’d gone to with my family as a child. I remember vividly the colors, the abundance. (I also remember my mother pointing out Charlie Chaplin to me and commanding me to remember that always. I did.) Elihu was happy to hear my story, and inspired that he might one day visit such a place. I told him I was pretty sure he would.
Since we no longer have the drudgery of homework (the routine assignments he received in his old school were little more than time-wasters in my opinion), we can instead spend our time creating impromptu flying machines of balsa wood and rubber bands. Elihu is a good thinker, a good designer, and I’m happy to see him tenaciously going after his goals. With a little help from mom and a couple pieces of duct tape he assembles some interesting contraptions. Our afternoons (he’s home nearly two hours before he would have been at his old school) and evenings have become an enjoyable time of stress-free winding down. Of chasing chickens and paper airplane-making. Most days I teach – but my students don’t come by for a good hour yet after he comes home, so we have a lovely window of free, unstructured time each day. The quality of our life here has noticeably improved in such a short time. Each day I feel renewed and grateful.
Today after school we’re going to make our pilgrimage to Schenectady for Elihu’s annual low-vision evaluation. We will meet with a most beautiful human being named Dr. Albert Morier, an exceedingly patient and understanding man. A man who respects Elihu’s need to know things exactly as they are; a man who does not in any way see Elihu’s reduced visual acuity as any sort of real handicap. I once wept when Dr. Morier created a lens for me that enabled me to see things as Elihu does. It was as if I were underwater; I could make out nothing that wasn’t within my arm’s reach. He comforted me in such an elegant and understated way, gently redirecting my perspective on things. He diffused the potentially heartbreaking moment ( I don’t ever want to create extra anxiety in my son and don’t like him to see me afraid or heartbroken for him), and never allowed Elihu for a moment to fear his mild disability. I almost feel like a visit to Dr. Morier is as much for my own emotional stability as it is for Elihu’s physical health.
After that, Elihu and I look forward to having a special dinner out. Here in this part of the country there seems to be a trend towards restaurants that combine many Asian cuisines; it may well be going on all over, but in my experience this is unusual and new. Not a bad idea though, for in one place Elihu can enjoy his beloved sushi and I can indulge in some Thai panang curry. After our fancy supper out, it’s off to a concert by the Adirondack Pipes and Drums in Glens Falls. I’m not sure how much energy we’ll have after our fine meal – it’s been quite a week and Elihu may not have it in him to go. But drums and bagpipes are up there with birds, airplanes and tubas – almost always worth the drive. It seems the chances are good we’ll make it. We’ll see.
Here are some pics of our post-Waldorf afternoon hours this past week…
After agreeing that we would put Molly down if she did not get better – and admitting to ourselves that we had little hope she would get any better at all – I am so absolutely pleased to report that our beloved hen is indeed much, much better today. And I’ve gained some skill the past few days in administering meds to a chicken. I know that her crop is on her right side – I know to avoid her trachea, I know how to hold her, pry open her beak and get the stuff in the right channel. At first it was tricky – not so much because of her non-cooperation, because in fact she, being quite sick, hardly protested. It was because of my lack of skill. I’ve given pills to cats before – and in the end, that’s probably harder, but just not knowing if I was getting it down the right pipe with Molly had me second guessing my technique. Guess I did something right because today Molly was not only walking, but she was drinking and eating on her own – and God bless her, she even pooped! And we all know you can’t leave the hospital til you have a bowel movement. Right?
I was further heartened to see she’d hopped down from her bench and had walked into the kitchen, where she pecked occasionally at bits of dirt on the floor. I poured some of her fancy, nutritive -rich, vet-bought feed on the floor in front of her and was relieved to see her eat some of it. Not much, but some. Although better, her hind end is still bare and rather plump, not at all what it should be. But I continue to massage it often, encouraging things within to keep moving as they should. Not sure if she’s egg bound or not. No conclusive info to be gleaned from the internet. Nor the vet. Not without an xray, at any rate. (And that aint happenin.) Just to be clear, she’s gone from a bird who went hours without any discernible movement to a bird making quick and darting, dare I say bird-like movements. Which is good news for a bird.
So after a happy Valentine’s day in which Elihu gave his classmates a drawing of a swan (he didn’t want to draw a dove, it was too obvious a choice) and gave each a highly polished and unique gemstone as a lasting token of his friendship, we are going to retire happily, knowing our beloved white hen sleeps just one room away, very much on the mend.
Robert and NancyThe Cathedral Choir of Men and BoysElihu with Grandpa's harpsichordElihu, at the restaurant, post-showElihu and Elizabeth
These were taken Tuesday evening at the Cathedral of All Saints in Albany, New York. Dad let them use his harpsichord for their performance of Handel’s Messiah. While it no doubt added to the splendor of the concert, the consensus in the Conant camp was that it was hard to hear. Seems the sound went up to the mile-high ceiling rather than out to the audience. Nonetheless, it was a great room for the music. After a long day of school, no supper and a long drive, Elihu began to get tired, so we left before the end. Ah well – a nice evening anyway. Just wish I had a better camera. My pics are never very sharp – but they’re enough to remember the evening, and that’s really what counts.
Marching Band in front of Saratoga Springs Town HallElihu, finally without glassesElihu loves the tuba. Has since he was 3. Just a couple more years...The marching band's on breakElihu follows the band on BroadwaySanta tells Elihu about the geese he sees from his sleighSanta, checking the children's holiday spiritThe field where we cut down our treeWe two, with our newly cut tree behindOur Christmas tree.
Elihu and his Red Golden Pheasant, TimothyAnchiornis smooches a Rabbit.Anchiornis rides a PonyProud Mommy's Newest Creation: The Roosting BarsAh, Max.Maximus naps on Elihu's lapMaximus love peas.Hal shows Elihu his African drumElihu and friend Carter in the snowJessie Bruchac and ElihuElihu at Ndakinna Nature CenterTrick or Treating in Saratoga SpringsAaah!Enjoying the Bounty
This Monday Elihu had a day off from school on account of Columbus Day and the weather was absolutely fine. We took off for downtown, just five miles from our country home, to take advantage of the tourists that would no doubt be strolling Broadway. Elihu was in a mood to play, and besides he wanted to make a few bucks to put towards the cost of supplies for his Archaeopteryx costume (that mom has yet to make).
We were so happy, so ready for this fine fall day that I kinda forgot all about my parent’s 52nd wedding anniversary. Oops. My dad himself didn’t know the occasion (Alzheimer’s kinda gloms the days together for him) so the day passed as any other. It wouldn’t be like my mother to remind anyone (not sure if it’s the 50s era ‘mother as martyr’ thing or what), so it went unrecognized. Maybe it’s because I always insist we all go out to dinner – and it’s mom who ends up paying. At least she got out of paying a hefty tab if nothing else. (My pitch for going out to a fine dinner is this: I claim the event will be fondly remembered for years to come but the bill will not, making it worth the one-time expense.) Regardless, I feel pretty lousy about forgetting the date. 10/10, how easy is that to remember?! Oh well.
Happily, we had a wonderful outside day full of fresh air and sunshine, music, dog-smooching and people-meeting. Elihu made $40, and we stashed $20. The house rule is “save half”. So half towards the Halloween fund, half for the bank (or the credit union, I should say. !) Here Elihu busks for some dancing babies, then he shares the sidewalk with cigar-chomping old-timers…
A disappointing post-script:
After waiting some twenty minutes for a two minute video to upload to this post, I was finally told that this file type (‘avi’) was not accepted due to security reasons. Huh? What to do now? It’s the only format my videos are in, and it’s never been a problem before. Can I save the file in another, acceptable format? Man. How deflating.
Hopefully in future I’ll have some cute vids here. Meantime, I think I’ll see if I can upload them to Facebook. My computer illiteracy is driving me crazy. If I’d ever thought my handicap was in any way endearing before, I certainly don’t think anything of the sort now. Just wish I knew how to catch myself up… Those classes at the library don’t come close. Sigh.
Instead of video, here is a nice snapshot of the day…
We live on a hill. The tops of the trees descend down its steep banks revealing a view of the lands beyond and to the southeast. There are two main layers to the many subtle strata of horizons; the darker ridge in the foreground are the low-lying hills just to the east of the Hudson river, the paler profile behind are the much larger Green Mountains of southern Vermont. I love to look out over the vast scape and contemplate the land on the ‘other side’. I picture the countryside’s bucolic scenes, the tiny farms and undulating topography. I don’t often have reason to drive there, for it’s a haul just to reach the foothills – a commitment of 50 miles there and back – so when I have a quest east of the Hudson, my heart quickens at the thought.
Yesterday, Elihu and I had a reason to cross the wide river valley and explore the hills beyond. I should have been excited, but I was not. It was raining and I’d forgotten my hat, I’d not slept more than three hours the night before and I discovered my driver’s license was not in my pocket but probably still at home in my purse (farmer business does not include a purse; important items are transferred to the interior ‘man’ pocket of my farm jacket). After having a little talk with myself, pointing out how there was no benefit to remaining angry, I managed to coax myself out of the pissy mood that had been incubating for the first ten miles of our wet commute. This was our Big Day, and I’d do us both right by just dropping it and welcoming the adventure that awaited us on the other side of the Hudson. We were going to the Fall tailgate poultry sale at the Schaghticoke (say SCA tih coke) fair grounds to find hens for our red golden pheasant, Timothy, whom we’d just purchased the week before. As she does quite often for us, the angel of serendipity came to our assistance that night as we stared in disbelief at our new avian acquisition by placing one Jim De Graff, former zoo owner and breeder of exotic pheasants, in our path. He’d told us about the bird sale this weekend. We were lucky; this event happened just twice a year. He was nearly 100% sure we’d find just what we were looking for. That he could be so sure that we’d find these hens was an indication to me that we were in for some serious, bird-intense sub-culture. We’d waited anxiously all week this very morning. This very rainy morning. Oh well, this was going to be fun no matter what I’d forgotten to bring, no matter what the weather. As Elihu sat in the back seat enthusiastically playing air drums to the radio, his face radiating joy, I began to lighten up too.
Driving south on State Route 40 from Greenwich to Schaghticoke is like driving through a model train set layout. The farms are tidy, complete with outbuildings and vintage tractors, hooved animals and ponds. There is a new scene to be admired around every curve, at the crest and valley of every hill, plus each scene has an expansive view to the west of the great Hudson river valley lands beyond. The forested hills rise to our left as we continue south towards the mysterious convocation of bird lovers. The road winds and winds. Elihu, not usually a child who asks ‘when will we be there?’ (as he thrives on the times when he’s left to live in imagination, something his near-sighted eyes promote on long car trips) finally does. Thankfully, I spy the town’s water tower ahead, and I can tell him we’re almost there.
When we pull in to the fair grounds, we see a makeshift village of tents and awnings. I’d hoped the event might be indoors, and later I discover some of it is, but the bird sales are out in the open. Hmm. Just how wet will we be getting? I wonder. Looking around the car, I find a broken dollar store umbrella and so no longer lament my missing hat. Elihu throws his hood up, we park in the first space of grass we see, and we’re out the door.
Each vendor has backed his vehicle to the gravel drive, rows of cages and boxes spread out on the grass. The breeds are identified by hand-written labels now folding in on themselves in the rain. Some birds are sheltered by newspapers on top of their cages, some are not. Ducks crowd into the corners of their wire cages sopping up the new puddles with a rapid-fire quivering of their bills. The most elegant breeds of chickens are sodden and sorry looking. Thankfully, the customers here can see past the cosmetic handicaps that the day has cast on these birds; every last person here knows his birds, dry or wet. Just like us, everyone here has come looking for a bird, most folks for one specific breed in particular. The very first tent we come upon has game birds of some sort. Two round women in their later years sit on old fashioned lawn chairs while their cigarette smoking husbands in red and black checkered flannel shirt jackets stand in front, greeting passersby. I wonder if it could possibly be this easy. It’s not a huge place, but there have to be at least thirty vendors. As we get closer, I can see these birds are in the right neighborhood – the shape is close, their movements are quick and timid… Could these be young pheasants? I tell the smoking man what we’re looking for. “Red Golden Pheasant hens, two of ’em.” He didn’t miss a beat, nor did he seem overly satisfied with himself that he just so happened to have two Red Golden hens right here in this box. “What?” I asked. “Red Goldens“, I repeated. “That’s what we’re looking for. And hens.” Yeah, he’d heard me. And they were, as he said, right here in this box. I peered in, and saw four brown somethings. Game birds, for sure. Females probably. “I got a Cinnamon too” he offered, holding the flaps open so I could get a better look. Wow. This was the place. Seriously, it was this easy? I asked the price, he told me $15 apiece. I remembered being advised not to pay more than $10 a head. I surveyed the grounds and wondered if there might not be dozens more red golden hens out there. But this was so perfect, and I was just talking about $10 here… I told the man I was interested, but had to look around for a bit. So Elihu and I went off to learn what this thing was all about.
We soon figured out the deal. While there was just about every type of outdoor domestic bird available for sale there, we noticed that there were not quite as many of some, and rather a glut of others. Some vendors had even sold their whole lot by this time and were packing up and heading out. I didn’t want to blow the whole reason for our trip, plus if we just got the hens bought and safely stowed in the car, then we were free to explore. Before we got too far into the flooded grounds, I turned back for the car. I told Elihu to wait at the pheasant man’s tent, I’d be back. I pulled up, paid for the gals and presented the farmer with our luxurious dog-sized kennel in the back. He wrestled the hens from the box, and placed them inside. They were a lot smaller than I realized, their bodies about ten inches long. There were so many questions I’d wanted to ask, but the rain had started up again and I just felt rushed. “They look young, our guy is mature already. Will that be ok?” I shouted over the noise. He nodded and assured me they’d be fine mates. Not much more I could do but continue with the adventure as it swept me along. There was more to see, more to learn, and as I’ve been saying to my dear son since he can remember “you never know until you go”. What we didn’t know about breeding pheasants we would learn as we went along.
I parked the car again and we were free to enjoy the rest of the morning. It seemed the breeds of the day were the Banties. Many vendors had them and lots of folks wandered through the grounds with the sweet-looking chickens in the crooks of their elbows. I guess the appeal of these miniature breeds is that they’re portable, easy-going and make nice pets. Elihu was able to smooch a few of these as they passed by. He was in heaven. In his element. Finally surrounded by people who felt just like him about birds. As a mother, you can imagine how pleased and thankful my heart was as I followed behind my son, watching him stop at each new cage as if it were the only reason we’d come. He was fit to burst and after a while I could not keep up with his wanderings. I’d stop to chat with folks, my quest for information on birds turning more into short interviews: Did these sales actually net them money? (No, not really.) Is this your business? (The layers pay for the rest of em.) Do you do this for a living? (Oh no – I’ve got a real job.) Is this a hobby? (Yes! No one here’s makin any money. This is a hobby. And it takes money!) Well then. I learned something important, that this was a hobby, not a rent-payer. Kinda discouraging (I’d begun to count my exotic pheasant chicks before they were hatched. Think of the money we could make selling them! Piece of cake!) and yet the bit about the layers was good to hear. Our layers had once made us money – until we began to lose them. Layers, wait… We need layers! I was shaken out of my bird-daze and came to my senses. We needed layers, and where better to find em then here? Screw the auction house! This was the fountainhead! I told Elihu our new agenda and we set off on our new quest.
After scouring the entire grounds we found but one vendor who had suitable laying hens. She had two fine looking Aracaunas, one single Barred Rock and a bunch of dark colored Leghorns. Five apiece for the Leghorns? Wow. Seemed we’d found a really good deal. As I learned from the woman selling a pair of Mute Swans, birds you buy at the auction house are likely to be questionable; sick perhaps, behaviorally challenged or some such deficit, usually the very reason they’re being sold to begin with. Here, these were all breeders, folks who sold healthy and well-loved birds. It made sense to buy our layers here if we could. It seemed we’d found our girls. The booth was just across from the food stand, and I thought it might be good if we had some lunch before we wrapped things up. If I hadn’t known it before, I learned it then. Not a good move. Shoulda paid for those birds to secure them before I walked off. After a quick lunch (I ate, he didn’t’) we returned to find the Leghorns gone. Elihu started to sniffle. While it is true that this is a breed he’s long talked about wanting, I still didn’t see the need for tears. Besides, if nothing else, this event had taught me a lesson, which made it worth the loss. Pay for something as soon as you know you want it. Got it. Next time. But for now we weren’t entirely let down; there were four fine hens remaining, two of which were the lovely looking Aracaunas. We paid for them and Elihu begged to move them himself – from the cage to our back seat bin. Elizabeth, the woman at the vegetable/hen stand easily agreed, and when she saw how handily Elihu removed the hens, restrained them, and transported them to his box she complimented him warmly. I watched, proud of my boy. If you’ve ever tried to handle and move a bird, you’ll get it. If you haven’t, all I can say is it’s a gift. Natural to some, unthinkable to others. Definitely takes a knack.
After placing our new hens in the car, I’d tried to back up and retrace our route, but a line of cars behind me changed that plan. Instead, I drove forward along the perimeter of the grounds, and we passed some more stands we’d not seen yet. Finding space on the lawn, I parked again so that we could make one last walkabout before taking our hens home. A long-haired woman stood beside a handful of cages in which a couple of ducks, a fuzzy miniature chicken and one very cramped goose stood in the rain, waiting to go home. I love a duck, I really do, so I just had to spend some time cooing to these guys. Elihu too loves a duck and in fact had talked for several weeks about having a Muscovy duck instead of a dog. We’d long felt an undefinable absence in our home (not filled by a parrot – we tried that – and for Elihu’s allergies unable to be satisfied by a cat) and had thought perhaps – especially since Elihu was eight – this was the right time for us to get a dog. While the idea seemed pleasing, it just didn’t sit right with me – or him. So, he’d somehow settled on the idea of Muscovy duck. We searched the internet for “Muscovy duck as pet” and found a story of a particularly endearing pet Muscovy duck named Archimedes which seemed to confirm for us that this was a definite possibility. So I had to visit the ducks. There was even a Runner duck – the strangest looking duck you ever did see. Long and thin necks, almost vertical as they stand, they just don’t look possible. While I love all creatures and find Runners interesting, I’m not a huge fan. And they certainly don’t look, well, pet-like. Smoochable. Whatever it is that makes a pet a companion and not just another animal. Then I catch eyes with someone. A large head cocks to the side and a marble-blue, orange-rimmed eye looks up at me. “A goose?” I ask, knowing it’s a goose, but waiting for the story that comes with it. “He’s the only American Lavender Ice you’ll find anywhere around here” she offers, beginning to fill me in.
My experience with geese is that they are not very nice. Definitely not smoochable. Not an animal you want to get your fingers anywhere near. However, this guy’s been bred to be friendly. See? She inserts a finger into the cage and wiggles it into his back. He seems to like it. ? This is a first. “He won’t bite me??” I ask, still very hesitant to test her on it. She assures me, laughing. I tentatively move a finger toward his bill. Not much happens. He ignores it, in fact. Really? Another first. I let her talk a bit about him, his breed, what makes him so unique. While that’s all good to know, what I want to know is is he really friendly, I mean really friendly? As in ‘companion-to-an-eight-year-old-boy’ friendly? She assures me. She goes on to tell me that her best friend growing up was a goose named ‘Lucy’. I say, yeah, fine, but a boy? A gander? Males play rough, right? She goes on to tell me that years later she was to learn that Lucy was actually a gander! (They re-named him ‘Lucipher’ because he didn’t like a certain guy in the neighborhood… I kinda let that one pass; it didn’t add to her pitch, and frankly, by now I wanted to be sold on this creature). His eyes, oh his eyes. The same sort of look as a duck, only more substance promised to live behind them. Or so I hoped. Geese lived long, right? Twenty years, some. They get along with chickens? Sure do. They used em as sentries in WWI, would they do the same for me? Yup, they guard the flock, ward off foxes, raccoons. Are you sure he doesn’t bite? Sure. I stood there just looking at him. Elihu danced around, telling me why he had to have the other ducks, beginning to create his campaign for bringing home a final, unplanned member of the flock. Little did he know I was way ahead of him.
“Ok.” I said. “I’ll take him.” Two other birders looked on and nodded approvingly as they stroked the Banties they held in their arms, telling me they’d do it too if they only could. (I could, right? Again, quick mental list – I’d told her about our accommodations and she’d thought they were fine) really, could we? Really? Wow. Who was piloting this ship?? Had I been overtaken by an irrational alter-ego?? Ok, I’d bought an exotic pheasant last week, his mates this week, a car full of hens, yeah ok, but a GOOSE?
“Oh ho! Oh boy!” Elihu leaped into the air and ran to the goose’s cage. “Max!!” he shouted, “you’re coming home with us!”. Max? Sure, why not? Everyone laughed. Kim, the woman who’d sold us the goose, had kindly offered to throw the tiny Silkie rooster in with the deal. She didn’t want to go back home with a rooster (yeah, I hear ya sister). She insisted that Elihu could show this lil guy in his 4H group at the fair – he could easily take the $100 blue ribbon prize. While that wasn’t necessarily a selling point for me (but still mildly compelling), the idea of a tiny bird that Elihu could easily take around with him – perhaps in the crook of his arm at the next fair in spring – was just icing on the cake. Why not? The little fluffy white chicken was docile, sweet and accommodating. Kinda like the bird version of a toy poodle. Perfect. Throw him in the car with the rest of em. Oh heck, he can ride on your lap, why not. After locating a box and shifting the cargo around some (again, praise for Elihu’s deft maneuvering of animals) we were ready to go.
Somewhere inside, I had a feeling our lives had changed forever. I went to Kim and hugged her – in light of the way she’d contributed to the new direction of our lives it felt absolutely natural. Whether the result of her effortless sales pitch or the next step of our destiny encouraged by subtle forces, our lives were now different, our family now larger.
Duck? No. Duck? No. Goose? Why not….
Elihu and Maximus
Post Script: While animal’s names are usually something we like to sit with for awhile and often don’t choose until after an animal has lived with us for a bit , ‘Max’ just seemed perfect from the first moment Elihu said it. His full name is Maximus, and it fits as he is the largest member of our flock.
Ceres Zabel, the hero behind the art classes at the Studio helps a student with her perspective.
Birds and art. Elihu is in heaven.
The whole class
Whitey, the only peaceful rooster we’d ever had. The day after he posed so quietly for the kids’ drawing class he disappeared. Went out in the morning with the flock never to return again. We’re glad he was immortalized on paper. And I’ll bet the kids won’t ever forget their drawing class that day.
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…
The Hillhouse 