I have this nagging feeling that I’m going to die in bed.
My parents sleep in the basement, so when I need to be rolled at night, I scream at the top of my lungs until someone hears me. We have a baby monitor that works 95 percent of the time, so it’s usually not an issue. It’s the other 5 percent that gives me anxiety.
The chances of both my parents dying at the same time are, like, astronomically low. Either they’re murdered at knifepoint, or they both suffer heart attacks — which, given their age, is becoming slightly more of a possibility than it was when I was 10. It’s unlikely. Statistically improbable. But I’m an animal with anxiety, so I run the scenarios until I’m so worked up that I’m choking on my own tears.
Scenario #1: Parents suffer heart attacks in the middle of the night. No one knows, so I’m stuck until one of my caregivers clocks in for the day. If Scenario #1 were to happen on, say, a Monday night, it wouldn’t be that big of a problem. A caregiver would come Tuesday morning, and all would be — relatively — well.
Scenario #2: Parents die on Friday night. I don’t have caregivers on the weekends, so I’d have to make it till Monday morning. And that’s assuming my Monday caregiver doesn’t call in sick or, in a feat of statistical impossibility, die in a car accident on her way to my house. Inevitably, my night feed would finish up around 11 a.m. on Saturday, which means I’d spend two whole days listening to my feeding pump alarm. Then there’s the anxiety attacks and the grief of losing my parents and the mind-numbing boredom of staring at the ceiling for hours on end.
A human being can survive three days without water, assuming they haven’t cried themselves dry. If my parents died, I would last three days in bed — 72 hours of cursing my body and the world and my pump for droning on and on and on.
People rage about smart tech and the horrors of tech moguls, and while their opinions are valid, their hostility bothers me because most of them probably don’t rely on Google Assistant or Alexa in life-threatening situations. Complain all you want about the world becoming a dingy reflection of “Black Mirror,” and I will be over here with my Google Home that can call my mom hands-free when my dad doesn’t answer my increasingly hysterical screams.
Scenario #3: I wake up around 7:30 a.m. I slept through the night, which is a miracle in its own right. I call for my dad, and when he doesn’t answer, I tell myself he’s probably in the backyard, feeding the chickens or staring lovingly at his second child, the food forest.
I wait a while, call again. Still nothing.
I decide to call my dad. I can’t see my Google Home from bed, so I have no idea if it heard me or not. “Hey, Google! Make a phone call.”
“Sure! Who do you want to call?”
“Calling Rick Albers, mobile …”
No answer. I call again — still nothing. I’m starting to panic, but at least I have a connection to the outside world, albeit a tenuous thread that could snap with any sort of Wi-Fi snafu.
I call my mom, who picks up on the first or second ring. She knows I don’t get up before 10 a.m. without some sort of monetary incentive. My BiPAP is on, my face is half-turned into my pillow, and I have earplugs in. We can barely hear each other, but through careful enunciation and pointed screams, I explain the situation.
Mom calls my dad several more times. He doesn’t answer. She has to step into a quick meeting, but once she’s out, she’ll come home.
I stare at the ceiling and sing “Hamilton” to distract myself. I should be in tears if the past is anything to go by, but it doesn’t feel real. A nightmare more than anything.
The panic sets in, a queasiness I can’t shake. I’m an animal with anxiety, so inevitably, my thoughts drift to life insurance. My mom will have to quit her job. Do we have the money for full-time caregivers?
I call Dad again, just on the off chance that something will have changed. For some reason, it’s his voicemail that breaks me. Maybe it’s the sound of his voice, or the memory of his laugh, or …
My door creaks open.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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