I’ve had a delay with my most recent freelance web design project and I need to let the people who hired me know about it. I’ve got my headphones on my head with the mouthpiece next to my lips, and I dictate the letter using Dragon Naturally Speaking. What I would like the letter to say is:
I’ve been hard at work on the changes you wanted me to make on your website, but I’ll need a few extra days. I should have everything done by Friday.
Here’s what it actually says:
I've been hard at work on the change if you want to been awake on your website, but I'll need a few extra days. I should have everything done by Friday.
Close, but nonsensical. I need to change the first sentence that I dictated so it actually makes sense. Probably the vast majority of people who use this program can simply highlight the part they want to fix and type in the changes, but I can’t. I have to do everything using voice commands. And while Dragon isn’t a bad program, it’s far from perfect.
“Correct ‘if you want to been awake,’” I say.
It highlights the phrase, then offers me some choices for other things it thinks I might have said. The second option is correct.
“Select two,” I say.
Now what the program is supposed to do is insert the second phrase into my text. But instead, it writes “select two” in place of the sentence. So now the sentence reads: “I've been hard at work on the change select two on your website, but I'll need a few extra days.”
I want my emails to sound professional. Jeff has hired me on several jobs so far and I want him to keep hiring me. Also, he’s not going to be understanding about me being a quadriplegic, because he doesn’t know I’m a quadriplegic. He has no idea. None of the people who hire me know that I’m disabled. Why should they?
I try again. “Select ‘select two,’” I say.
Dragon doesn’t like this command. It’s spinning its wheels, trying to figure it out. It would be so much easier if I could just reach down and correct those few letters with my keyboard. But I can’t.
And then the damn computer is frozen.
If Cathy were here, I’d ask her to do a hard restart for me. But unfortunately, I’m alone. I’m not alone often, but it’s sometimes a necessity. My morning caregiver leaves around 9:30 and my mother will come to help me at lunch at eleven. So that’s an hour and a half gap where I’m alone. I have the PCA set me up at my computer, and we all just hope I won’t need anything until eleven. Which I usually don’t.
It’s just past ten now, which means my mother won’t be coming over to help me for almost an hour. So that means I have to restart the computer myself. Fortunately, in the front pocket of my T-shirt, my PCA has placed a stick with a mouthpiece that I can use to do the hard reset myself.
I bend my head forward as far as it will go, and grasp the mouthpiece between my teeth. When I’m certain that I’m grasping it securely, I carefully pull it out of my pocket. I then lean forward as far as I can, reaching for the power button on the computer with the point of the stick. I hit it.
Not hard enough.
I lean forward further. The belt across my chest keeps me from going too far, which is probably a good thing considering it’s the only thing keeping me from falling forward in my chair and not being able to get back up. But I only get a few more millimeters of distance. I press as hard as I can and in the process, the mouthpiece slips from my lips.
I watch in horror as the stick falls from my mouth and clatters onto the desk in front of me. Then it just lies there.
It’s so close. It’s right in front of me, six inches from my fingers. But it might as well be in Mars. I can’t reach that stick. There’s no acrobatics I can do that will get me that stick, short of telekinesis. I’m fucked.
Well, so much for writing a letter to Jeff. I guess I’ll do it when my mother comes.
I figure I’ll watch television in the living room until she gets here. Cathy set up one of those Alexa systems that I can control with my voice, so it’s pretty foolproof. It can be frustrating at times, like everything else, but I’m better off now than if I’d been a quad twenty years ago.
I lean my head back, shaking it until the headset falls off and lies around my shoulders. It’s still plugged in to the computer, but if I back up quick, it will yank the cord out. I’ve done it before—it will be fine.
I lean forward to bring the mouth controls for my chair closer to my lips, but then I realize something else horrifying. When my PCA put my headset on, she twisted my sip and puff controls all the way to the side. They are too far away for my lips to reach them.
I want to kill her. She knew I was going to be alone here for over an hour. How could she not make sure my controls were within reach?
But really, it’s my fault. I should have checked.
This is fucking depressing. I can’t help but feel the true extent of my limitations when I’m staring at my wheelchair controls six inches away from my face and unable to reach them. Independent with mobility? Sure, if somebody doesn’t move my goddamn control just a couple of inches away from me.
So now I’m stuck here, staring at the frozen computer screen for the next hour. Thank God it’s no more than an hour. I’d been telling Cathy that it was fine for her to leave me alone for two or three hours, acting like a big shot. But it’s clear that even an hour is probably too long for me to be entirely alone.
It sucks. I’m in my mid-thirties, an adult, and I feel like I should be able to stay on my own. But it’s clear that it’s not realistic. I’m not sure how we’re supposed to fill in the gaps though. There’s a teenage girl who lives two blocks down who stayed with me for three hours a day last summer—she fed me lunch and helped me with whatever I needed. It wasn’t a bad situation—she was a nice enough girl and she didn’t charge too much. She didn’t help me with any personal stuff back then, but she told Cathy that she was thinking about nursing school and might be willing to get trained in some aspects of my personal care next summer. At the very least, she could learn to empty my leg bag.
Sure, it was a little awkward to hear her refer to me on the phone as “the disabled guy I babysit for.” But that was a small thing.
Cathy wants me to spend a couple of days a week at an adult day program. Those programs are really for old people with dementia, but there’s a local one that does take people with severe disabilities who can’t be left alone during the day. They wouldn’t be able to provide any physical care, but they told us that it would probably be a good exercise for the other residents to feed me and help me with other things. But I nixed the idea, partially because I do work during the day and this would keep me from my computer, and also because I hated the idea of being in what is essentially day care for adults.
Eleven o’clock rolls around and I start to get panicky. Where’s my mother? She’s usually on time. I make one last ditch reach to try to bring my wheelchair controls close enough to use, but it’s hopeless. I’m stuck until she gets here.
Five minutes later, I hear the lock turning and blow out a sigh of relief. Mom strolls into the house, and immediately ruffles my hair, even though she knows I hate that.
“Everything okay, Jamie?” she asks.
“Can you move my controls?” I ask her, before even explaining about the computer.
“Oh, dear,” Mom murmurs. She brings the controls to my lips and I’m flooded with relief. I’ve got my mobility back. I move away from the computer and immediately do a weight shift backward. I’ve been in the same position way too long and I don’t want to get a sore.
My mother restarts the computer with one button press, then feels my leg bag to make sure it doesn’t need to be changed. She doesn’t even ask anymore—she just grabs it. “Your diaper is clean?” she asks.
“Yes,” I say.
“Should I check?”
Her checking would involve unstrapping me from my chair, then leaning me forward to get a peek inside. But the truth is, I can tell when it needs to be changed by the smell.
“No, it’s fine.”
Mom smiles. “Let’s make lunch then.”
Since the computer is busy rebooting, I follow my mother to the kitchen where she prepares my lunch. Whatever it’s going to be will be something low fat and low calorie. Right after my injury, I lost a bunch of weight and couldn’t seem to gain it back. That trend continued for several years. But lately—I’m not sure if it’s just that I’m getting into my mid-thirties and my metabolism stinks, but I’ve been gaining weight. Too much weight.
As a quad, I really can’t risk being overweight. It will put me at risk for skin breakdown and make it harder to do my care. But on the other hand, I can’t exactly go to the gym and work off the extra weight. So my only option is to diet.
So far, I’m not sure it’s working. Ever since I lost the muscles in my trunk, my belly has jutted out, but I was never fat exactly. But now my gut has definitely packed on some extra weight, to the point where my pants that have buttons don’t button anymore. And the sweatpants leave behind a scary indentation. Cathy had to buy me all new pants. And my shirts all stretch over my belly.
On the plus side, at least my face has filled in again and doesn’t look so skeletal anymore.
“How long do you need me to stay with you?” Mom asks me as she starts chopping lettuce.
“Cathy is coming back at two,” I say. “We’ve got a doctor’s appointment.”
She raises her eyebrows. “Everything okay?”
I haven’t told my mother about my new mission. I know she’d say I’m being ridiculous or vain. She sees nothing wrong with the fact that I need diapers. She can’t figure out why it bothers me.
“Just a check-up,” I say.
I’ll tell her when it works.
My lunch turns out to be a salad with low fat dressing. It’s fine. I like salad, and I definitely want to work on this weight issue. Mom puts the salad bowl down in front of me, spears some lettuce with a fork, and holds it out for me to eat. Of all the people who feed me regularly, my mother is actually my preference. She’s very patient. My father is the worst at it. Well, technically, Leo is the worst at it, but of the adults, Dad is worst. He won’t wait for me to finish one bite before he’s got the next ready, and he doesn’t like waiting. I end up wearing a lot of my meal, which Leo thinks is hilarious. Daddy, you need a bib.
Yes, that’s just what I need in my life. A fucking bib.
As Mom feeds me, I focus on my doctor’s appointment. This could potentially change my life. I just hope Cathy is open to what the doctor has to say.
To be continued...