“My God, I knew it,” came from the other room. A moment later, his wife, Emily, entered his bedroom with the morning newspaper in her hand.
Henry used his large, red, single-switch button–pinned onto the pillow case, an inch from the left side of his head, to type out a phrase, which was then spoken out loud by the voice synthesizer attached to his computer.
“Diid yoouu waaste mooney oon aa looising looteery tiicket?”
The previous week, Henry had changed his synthesizer setting, from the robo-voice made famous by British Astronomer Stephen Hawking, to a voice that mimicked the bored, drawling accent of some guy who had probably never actually walked on Planet Earth. Even after a week, it caused his wife to shake her head with a mock-contemptuous expression.
“That too,” she replied. “But there’s an article in today’s Journal about GMO’s. Apparently a large research study found ALS-like symptoms in rats that were fed Round-Up-ready soy products for three months. Fifty percent of the subjects developed motor-neuron damage after a month; 80% in six months; and in a year 87% were dead.”
“Shiiiit. Hoow biig waas the stuudy?” the voice-synthesizer inquired, in its fake British drawl.
Emily turned the newspaper section back to the front page and scanned the columns for a few moments. “Here it is. There were 350 subjects in the study.”
“Whaat eelse?” Henry inquired.
Emily turned back to the article’s continuation, scanned for a few moments, and with a scowl on her face started reading. “Phillips, the lead scientist in the study, observed that the manufacturer of “Agent Orange” also makes the Round-Up that farmers are obliged to put on their Round-Up-ready crops, including almost all of the soy and most of the corn consumed in the United States. Round-Up is sometimes called Agent Orange Lite.”
“Fuuck me and the laandlaady,” came out quickly, since it was one of the preprogramed phrases that Henry had entered into his “Words Plus” program. And after a longer pause, while he typed in letters with his pillow-mounted single-switch button, he added, “Reemind mee.”
“Remind you of what?” Emily asked. “About all this GMO shit? How it’s fucking up our planet and everything that lives on Earth? How there may be evidence that your ALS is following in the bloody footsteps— in the wheelchair skid marks, I should say—of all those Vietnam vets who are now six feet under?”
“Yeess,” and after another longer pause, while Henry typed out another phrase, “Siincee yoouu puut iit soo sweeetly.”
Emily folded the paper and laid it on the foot of the hospital bed, then flopped down in the upholstered lift chair into which—until a week ago–she had transferred Henry for an hour or two each day. But since the Hoyer Lift which she needed to transfer his almost completely paralyzed body had stopped working seven days ago, Emily had been calling the insurance company for a replacement unit every day and Henry had not moved except for the sponge baths and repositioning needed to avoid serious skin break-down.
The Hoyer Lift, mounted on wheels and using a body sling, was the only way she could move him between bed, power wheelchair, electric armchair, shower chair, and toilet. Although, since Henry could no longer balance on a toilet seat or a shower bench, even with a functioning hydraulic lift to get him there, it seemed that more and more of Henry’s life had been taking place in his bed already.
Henry typed out another phrase, but before sending it to the voice synthesizer he changed the voice setting back to the Stephen Hawking voice, “Should we eat different kinds of food?”
Reclining in the comfortable armchair, Emily’s eyes had closed. But now she apparently found a new energy. “Oh, that’s a great idea. I could study all the food labels at the grocery store for Certified Organic foods, and by spending half my days and twice the money that we get from your disability check, I could get a little less Round-Up and a little less GMO produce in our diet.”
“But wait,” she continued, as if the revelation had just struck her, “You already have ALS and are living off Insure dietary shakes, which make you gag every second sip even with thickening powder added, so changing our diet is not going to help you. But, since I’m just hanging out at home, fighting with insurance companies and washing the sheets, becoming a knowledgeable shopper could be just the hobby I’ve been pining for. Maybe I could even write a best-selling cookbook. I know. I could call it ‘Learning to make lemonade out of lemons’.”
“Sorry I asked,” came out of the talking machine, and it sounded so forlorn in its BBC astronomer’s accent, that Emily started laughing. After a few moments it would have been hard to say whether she was laughing or crying.
This took me back to seeing Elizabeth in the Hoyer lift and down a memory path I usually avoid, but I am grateful she could talk until the end. I can see it could have been worse. Thanks for helping then, Michael, but if this a new book, I may skip it.
I guess you gave at the office–or rather, at the bedside. Maybe my motivation to write about disability sticks around because I never had to really deal with it on an intensely personal level. So I find it possible to romanticize people who keep dealing with whatever floats in on the steam of time.
Meanwhile if I write a light comedy, I’ll be sure to let you know.
Interestingly romance and love don’t disappear in dealing with disability. The forms may change. Did for us. But some simple things become more intense in lieu of the absence of former abilities. You have to go with your impulses in writing, but I am sure you will et me know if you write light comedy. Cheers!