Church Avenue Chomp

Henry with Rody.

For Henry’s birthday, we bought him an Italian rubber bouncy horse, brand name of Rody. It’s green. To my slight disappointment, he preferred the gifts that light up and play garish music, instead of the ones that stand with a regal quiet, like little foreign donkeys, until you bounce them yourselves. I suppose, though, that this is to be expected.

In addition, Henry was, and still is, too little to really bounce the horse properly. But lately, he appreciates Rody and slaps its saddle and says “enh! enh!,” like you actually speak that language, until someone hoists him up 8 inches into the air so he can ride the horse.

My relationship with Rody is complex. He’s a great-looking toy plus he’s supposed to be poison-free, but he smells like lampante, which is the Italian word for really cheap rancid olive oil. (It’s inedible lamp oil.) Half of the time I’m sitting in my living room, I have this sentence running through my head. “Rody smells like lampante.”

Henry’s dad put him on Rody the other night and Henry was laughing up a storm and holding Rody’s ears and bouncing away as I sang the Lone Ranger theme, which you cultured folks might know as the fourth movement of the William Tell Overture. So here we go, everybody all together now:

ba da bom ba da bom ba da bom bom bom

ba da bom ba da bom ba da bom bom bom

ba da bom ba da bom ba da bom bom bom

ba da BAAAHM

ba da bom bom bom

And throughout the whole of that part Henry is bouncing up and down & up and down & up and down, smiling so that I can count all seven teeth.

But then, just exactly at the part where the music changes, he stops bouncing up and down and changes his approach — suddenly he’s swaying side to side. He’s dancing. He continues the dance that goes with that section until I finish the song.

Henry loves to dance. I support that. When I casually say “I support that,” what I mean is that it makes me happier than almost anything else in my adult life has. When my mother-in-law once commented “Henry’s the only guy I know who dances to ‘Jingle bells,'” I stood a bit straighter, swelling with parental pride. I have more to say on the dancing . . .

but back to the Lone Ranger. My point is that Henry transitioned just as the music did. At 13 months, does he KNOW? Have I sung the Lone Ranger theme to him enough that he knows what’s going to happen? That’s possible. Or is it that he could he predict the shift in dynamics? I mean, that’s why the Lone Ranger is such a great song, right? Because the shift makes perfect sense.

I often think that great music is music that you’re immediately used to, because it taps into some sort of natural pattern, and activates a pleasure center in your brain. Do you know the song “Crazy” that came out a few years ago? I read heard that there is some sort of machine that a song can be fed through and “they,” industry executives, can predict if it’s going to be a hit. “Crazy” was used and an example of something that everyone would automatically really like.

The Lone Ranger probably would have set off the hit-o-meter, too.

Last week I wrote about my sister’s eye-gaze computer, but I want to say a bit about my last visit to Connecticut, to put the way that the assistive technology works (or doesn’t) in better perspective.

After 4 weeks of being thwarted by a cold (can’t bring a cold there), then a snowstorm, then a cold (see previous parenthetical), then a snowstorm, we left last Tuesday and returned last Wednesday. As always, the visit was crazy and hard and nice and too short.

When we arrived, Beth’s computer was offline and she wanted me to check to see whether it was the modem or the wireless or the computer.

I was experimenting with no luck while halfway relying on Amelia (Beth’s daughter, Henry’s cousin) to watch Henry. I forget sometimes that she is only four. They are deeply in love. Cousin love.

Amelia adores babies but as always, Henry was torn between his devotion to his favorite humans and his zeal for consumer electronics, so he trucks on over to see what I’m doing and how he can get in on the action. Then he starts banging the keyboard I’m using with the flat of his meaty little hand.

I’m trying to get him to stop doing this, and to stop gnawing bits off of a rubber ball, and to stop speedcrawling towards the stairs, when I realize that he’s actually managed to call up the Barnes and Noble website. Due to one small act of violence on his part, we’re online again. But by this time, it’s time for Beth to get a massage.

During the massage we needed to leave the room and find some other entertainment, so I decided to give Amelia and Henry a bath together. This is a total blast, despite the peeing.

Then Kathy, the massage therapist, comes in, and she says “Pig bubbles. Be discreet. That’s what Beth’s screen says. It says ‘Pig bubbles. Be discreet.'”

Hmm. Many of Beth’s notes are cryptic, either because of their necessary brevity (since one eye working all the time gets tired), or because the computer is not correctly calibrated, or because it’s hard to type what you want when there is a predictive technology trying to finish thoughts for you.

Eventually we puzzle out that Beth wants me to get PICS of the kids in the bath together, and that for maximum effect it should be a bubble bath, and perhaps that it should also be a bubble bath for maximum discretion, since everyone in the tub is naked, as is customary during baths in the United States of America.

“Beth is the queen of cameras,” one of Beth’s helpers commented the other day. No, I corrected, Beth is the dictator of cameras.

I have never eaten a hot meal in her presence, because once you are together, it is an occasion. So once a meal is cooked and on the table, you have to make it look just a bit nicer, then get the camera, then pass the camera around so that everyone is in the photo, in different versions. Actually! We need more than one camera! One for prints and one for right now.

See, dictator.

But since she can’t leave her bed, it allows her to see the kids together in the tub. And thanks to her, things have been documented in a way that they would not normally be.

We eventually did start with fresh water and make the bath a bubble bath, but that was too overwhelming for the baby.

I mean the bubbles, not the idea of a urine-free tub, though I guess you never know.

Spaghetti for lunch,

spaghetti for dinner:

Spaghetti never made

anyone

any thinner.

they call this a "triangle" slice. (as opposed to the square.)

We, the adult members of the household, often play a game where we each try to list five good things that happened on a particular day. Usually we can scrounge around and get to five. It’s fun, plus it helps to keep other parts of the day in perspective.

This is my list from yesterday. Yesterday was so excellent that not only can I list 5 things, I can list 5 things that all start with the letter “P.”

1. PIZZA Friends we haven’t seen in far too long brought over, in addition to their perfect little baby girl, some pizza. Not just “some pizza,” but one round special and one square pie for lunch from DiFara’s, one of New York’s most famous pizzarias, which happens to be about 3 blocks from our house.

Dominick DeMarco is perhaps the most self-actualized being I’ve ever encountered. He was born to make pizza, and he makes the most amazing pizza he can, all the time. At about 70 years old, he works about 363 days of the year, in the unhurried style of a turtle in the sun, with super ingredients. (Why do turtles always get the best ingredients?) When Dom’s checking a pie, he pulls it partway out of the oven without a mitt. When it’s out, he grabs a basil plant and snips leaves right onto the pie. When the health department cites him for these things, New Yorkers try to have the health department shut down.

2. PORCH It was 71 degrees, so lunch was on the porch. I love the porch. We should have the porch be our family crest, instead of a pair of goats backing up and growling at one another, which was my previous suggestion.

3. PINK HELMET We got HAPS a bikeseat, so we needed to get him a helmet. The pickings for people with tiny little heads were slim, and for the most part, boring. The best one was pink and green with monkeys on it. So, we got our son a very expensive, pink, safety-enhancing hat. We’re convinced that he can pull it off, what with his manly bearing and all. No, seriously, he’s a baby, and boys deserve fun colorful stuff. Even his father was adamant that HAPS should have the funnest, with-monkeys helmet possible.

4. PORK CHOPS, BEIJING STYLE After months of sulking inside, we spent most of the first amazing weekend of the year out and about. For dinner we met MORE friends at Lucky 8 in Sunset Park for dinner. It’s a very family friendly, highly delicious Chinese restaurant. Snow peas shoots, deep fried lobster, that caramelized duck, perfect rice, and something new to me: Beijing style pork chops.

I’d never tried Beijing pork chops before but my friend Kevin, who is a fake vegetarian, raves wildly about them.

We ordered a platter of porkchops. WOW. The baby could instantly tell the difference between the roasted duck with the delicious deep-brown caramelized skin, which he hated the sight of and batted away any time we suggested it to him, and the deep-fried glory of the also brown boneless porkchops, which he tried to commandeer the entire platter of. They’re that really bumpy sort of fried and have a really savory sweet taste, which I think might be Chinese 5 spice. Kevin and the baby went neck and neck for who could eat the most chops. Kevin is a tall guy with a long reach, and he’s got plenty of teeth, so you might think you should put your money on him. Well, HAPS may be small but he’s passionate, and he has great focus. Plus he has a dad who tears pork chops into bits for him, a fact which put Kevin at a definite disadvantage.

When ours were gone, HAPS started scanning other tables just to see what they had. You know, just in case. And I’ve never seen him happier than he was afterwards. He even let Kevin carry him around. NO ONE is allowed to carry him around. Perhaps he is hoping the Kevin will be his Beijing pork chops dealer.

5. PEOPLE Lucky to see so many great friends this weekend.

Now, I give you a personal challenge: tell me about your five good things from the day. They do not all have to start with the same letter.

Beth, my sister, has ALS. She can’t really move anything other than her eye muscles. She does have a computer that registers her eye gaze, though, and that is how she talks.

The computer needs to be calibrated so that a spectral vision of her glinting pupil in black and white is square in the middle of a box on her screen, and then she registers her gaze at several different points, and doing this sort of triangulates her whereabouts, I guess. Then she gets a keyboard screen up where she can focus on a letter for a second, and it selects, and then that letter appears in a message box. It’s an extremely delicate set up — in addition to needing to be angled correctly, her eyes are very light, so the room can’t be too bright. Otherwise, her pupil won’t register.

When the computer works, I can’t tell you how amazing it is. She can express what she needs or what she is thinking, or let us know that the feeding tube is set to 30 and it’s supposed to be set to 70. Someone can read her notes from her screen, or she can prepare a whole message and have it read aloud by a very confident-sounding lady robot. Sometimes I wish I sounded like that voice. And sometimes I hate it, because she’s trying to get it to read something from a minute ago and it reads everything that’s been stored in there since the computer has been on, so it can be days worth of shards of messages for other people, with lots of polite inquiries and some frustrations and some things that were clearly only meant for the person they were typed for — private.

By the time Beth got the computer, she hadn’t been able to talk in long time, and she hadn’t been able to use the other computer for email because she could no longer use her hands. And then late one afternoon, I suddenly got an email from her. I almost collapsed from shock. If you want to know what I really did, I almost dropped my blackberry into the toilet. Something precious had been returned to me.

However, the machine is constantly conking out. If you think it’s frustrating to have to reboot your computer, imagine if it was your sum total of communication, and you couldn’t use your arms to fix it when it broke. And imagine that once it was rebooted you needed someone to help focus it so that your pupil was at the exact angle you needed.  And Jesus Christ, imagine if that person were me. I am the worst at recalibrating the machine, in part because I have no sense of spatial relations and in part because I have no patience. Also, no one has ever really explained to me how to do it. Sometimes I feel like some of the most fun I have with my sister is when I’m cursing up a storm trying to move the screen, her head, the pillow, the little built in camera, to get her eye in focus and then after 25 minutes or so being like,

“Um, are those the lashes? Or wait, is that some hair on your head?”

I”ll see that she’s sort of laughing in her way and suddenly I’ll realize I was working trying to get the pattern on her shirt in focus, or something. And I step back and realize, wait: *I* am frustrated by this situation? I would have exploded like a piece of popcorn if I were her, into skin and burned bits and a big white puff if I had to deal with the shit she has to deal with. But at the moment it is happening, sometimes . . . sometimes . . . she is laughing at me. Which makes me laugh at myself for a moment. And we are laughing, and we are hanging out, and it is ok, because we still have that, from time to time. And being happy together for a second is better than talking via a stupid computer, even.

When I’m in Brooklyn and her machine is both online and calibrated, we can Skype. The Skyping is a newish development. She wanted to be able to videochat with my son. Oh yeah, they’d make quite a duet, with her not being able to speak, and him only shouting fake sneeze noises. It’d be fun, though, and Henry loves his aunty, plus we could see her kids, as well.

Beth may not be able to move, but she somehow captured and sent me this picture from one of our calls. She actually sent it 7x. On purpose? Dunno.

I ordered her a camera so we could see Aunty Beth. It arrived in Connecticut and once it was there, I wasn’t there, and for a while, no one could really figure out how to set it up. It’s the type of thing where she would have been able to set it up, but she can’t do anything, which is the whole problem with everything. Arggh.

Finally, it was attached but for some reason, still not working. But she had her Skype account working, and she’d Skype call me all of the time. No, really –she’d Skype call me all of the time. It was mostly accidental. When you are controlling things with your eyes, you can end up doing things accidentally just by looking around. Yeah: you have ALS, so stop talking, and moving, and oh, looking around casually, too. So we’d have a chat, and then I’d sign off, and then two minutes later it would be ringing again. It was actually much like the previous, healthy, chatterbox version of my sister, who called me every 15 minutes. The type of thing that might drive you up the wall when it’s happening but man, it sure leaves a void when it abruptly stops.

Anyhow, the computer phone would ring, and I could see that it was her, so I’d answer if I wasn’t on a call for work. And then I’d put it on video. Enabling “video chat” calls up a picture of me on my own screen. Ahh, my favorite. Closeup of myself. If the camera were working on her end, I’d have been able to see her, too, and the video of me would have been minimized. But alas, her camera wasn’t working. And so I’d pick up and say hi, and start chatting, except, hello, my sister can’t talk. So the situation is me looking at, and talking to, a very large, moving picture of myself. It’s about as narcissistic as you can get.

It would be enough to give anyone a complex, because regardless of what you might say to yourself in the mirror, it’s different if you know, or suspect, that someone is actually listening. But there are certain people in your life who you’re able to do anything in front of. And luckily, in front of my sister, I can just talk and talk or imitate the librarian in story hour or sit there and say um or tell her my favorite pirate joke ten times in a row and not worry too much about her thinking that I am an idiot. For better or for worse, her impression is already formed. And talking is talking, sure, but if you break down the act, it’s like the metaphor of “breaking bread.” You are eating, but the larger context is sharing time and space and thoughts or even just the act of being with another person. You can also get a lot out of just sitting together — even if you can’t see or hear the person.

She’s also much — MUCH — better at keeping my secrets these days.

Read more posts about ALS here.