In Returning to Normal, I Express Gratitude for My Mom
Life becomes hectic when this columnist's primary caregiver gets sick
By the time you read this, my dad will be back where he belongs.
I am, of course, joking. My dad has a life outside of his caregiving duties, as he should. But there’s some truth to the claim that, in his absence, things tend to fall apart. If you have a primary caregiver, you’ll know what I mean.
It’s hard to believe that I’ve been living this way for two weeks, while he’s had COVID-19. On one hand, it feels way longer; on the other, it feels like no time at all. In moments of stress, time seems to compress. You forget how to be a person. It’s as though the world keeps turning for everyone but you.
All things considered, this is a pretty normal experience for me. It happens every time I get sick. I leave the hospital and realize with startling clarity that my life has changed, and the world along with it. It usually takes me awhile to settle back into a rhythm. Even then, it still feels like there’s a mismatch between the world as I understand it and the world as it is in reality.
I’m already starting to feel this disconnect. My content calendar hasn’t been updated for weeks, my sleep schedule is out of whack, and then there’s the book I was supposed to be revising. I was so stressed out by Dad’s illness that I struggled to be productive. I couldn’t focus, let alone approach my manuscript with a clear and level head.
But this is all part of living with a disability. Sometimes things are great; sometimes things are terrible. Sometimes you have plenty of energy, and sometimes you have none at all. If you’re lucky, there’ll be a reason for the change — something obvious, like a head cold or a bad night’s sleep. But more often than not, you have no idea why, and it’s all you can do to keep your head above water.
I wish I could say that I weathered the past two weeks with grace and poise. But I didn’t. I was frustrated with the situation, with myself, with the incomplete tasks that were starting to pile up. I didn’t want to wait it out. I wanted Dad to get better, and I wanted him to get better now.
I was, in short, a mess. But as with all things, there were glimmers. Reasons to get out of bed, like my friends, who showed up for me in countless ways, reminding me to be gentle with myself. Or my cat, Rey, who slept with me every night, despite the fact that she struggles with change and wasn’t enjoying the interruption in her beloved routine.
Above all else, there was my mom, who navigated the storm with the skill of a weathered skipper. She works full time, and likely puts in more hours than she gets paid for. The last thing she needed was to take care of me and our new kitten on top of everything else. She thrives under pressure, but the fact remains that she was testing her ability to juggle multiple plates at once.
Yet she never dropped a single one. There were messes, of course, but she never failed to clean up afterward. She worked a full-time job, cooked for three, provided medical care for her disabled daughter, nursed her sick husband, and took care of a particularly demanding kitten, all at the same time.
How did she do it? I don’t know. But I’m grateful for her, and the opportunity to slowly — blessedly — return to normal.
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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.
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