For Some Disabled People, Early Start Times Are Inaccessible

My dad and I are night owls. We rarely leave the house before noon — and when we do, we complain the entire time, like a pair of sulky babies. My mom laughs at us, but it’s just how our brains are wired. We can fight it, and force ourselves out of bed at the crack of dawn, or we can embrace it, and direct our energies elsewhere.

But sometimes, the world conspires against us. Sometimes we have no choice but to make like morning people.

We’ve all had ridiculously early, break-of-dawn, “I should not be cognizant while half of the city sleeps” medical appointments. We’ve all called a specialist to schedule an appointment, only to wince, because the next available time slot is four months away — or five months, or six, or a year — at 8:30 a.m. It’s inevitable, and it’s part of chronic illness.

There are, of course, people like my mom, who genuinely enjoy getting up early. But there are also people like me, people with tension headaches and chronic fatigue and a hypersensitive body that throws a fit at the smallest of changes. People like my dad, who hate mornings but are otherwise healthy, are able to bounce back. They’ll be tired, and probably a bit grumpy, but it’s nothing a dose of caffeine and a good night’s sleep can’t fix.

For people like me, getting up early is an ordeal. It upsets the system. It takes days, if not weeks, for our bodies to regain some semblance of equilibrium. In the meantime, we deal with everything from pain flares to compromised immune systems. We’re not just tired, we’re benched. And it affects every aspect of our lives — work and play, relationships, and mental and physical health.

8:30 a.m. is more than a number. I can’t just roll out of bed. My morning routine is ridiculously complex — between medication administration, transfers, toileting, showering, dressing, respiratory treatments, and last-minute wheelchair adjustments, it takes me an hour and a half to get ready.

Then there’s transportation. My accessible van is a privilege, but many disabled folks rely on public transit and are beholden to a set schedule. Some patients drive hours to see a specialist, even staying overnight in a hotel.

8:30 a.m. is more than a number.

It’s an hour’s drive, give or take a few minutes, especially when you consider traffic and parking and inevitably getting lost.

It’s an hour and a half of preparation, and an hour on top of that for my caregivers to drive to my house, or in my dad’s case, drag themselves out of bed.

It’s a day-long headache, and fatigue that makes me nauseous, and berating myself for not being productive later in the day because I’m just so tired.

It’s mentioning to a friend that I had to get up early and kicking myself, because 8:30 isn’t early, not really, not for people who work a 9-to-5 shift.

It’s struggling to eat dinner because I’m physically worn out.

It’s repeating everything I say, because my voice is weak, and people can’t hear me through my face mask.

It’s wanting to write this column on my phone during the drive home, but not having the energy to do much of anything, and wondering, dimly, with some amount of bitterness, what it would be like to have a body that works.

8:30 a.m. is more than a number. If I skip a shower, it’s 6:30 a.m., or 5:30 for my dear old dad who is saddled with taking me downtown every time I have an appointment.

If I want to feel like an actual human being, with clean hair and semi-presentable clothes, it’s 5:30 a.m., and 4:30 for my partner in crime.

It’s wanting to see a neurologist about starting Evrysdi (risdiplam). Calling five different phone numbers just to get in touch with the muscular dystrophy clinic at the University of Minnesota. Making a face at my caregiver, who’s swapping dates and times with the receptionist on the phone.

7:30 a.m.? I want to scream. Do they have anything later? The next available appointment is 8:30 a.m. on the 30th. I groan and do the math and add it to my calendar, because beggars can’t be choosers, and I’m eyeing a treatment that could significantly alter my quality of life.

It’s breaking the news to my dad — I know, I know, but I didn’t have much of a choice — and feeling like a terrible daughter and and and …

It’s stopping at a bakery on the way home, because we’re night owls, and early starts require a reward in the form of Bundt cakes.

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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.