Silently Skyping with My Sister

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.