Anxiety and Apple Orchards Redux
Three years ago, I wrote a column about anxiety and apple orchards. After a long day at an orchard with my caregiver and her daughter, I reflected on something my therapist had said to me: “Can you feel the anxiety and do it anyway?”
Three years later, life looks a little different. There is, of course, the pandemic, and the resultant weirdness of being out and about. But also the smaller things. I’m no longer in grad school. I’ve been on an antidepressant since 2019. My caregiver’s daughter Elena is a big sister now; Ada, her sibling, is a shaggy-haired sunburst of mischief.
Three years ago, I was 23. Now I’m 26, though I’m pretty sure the pandemic aged me a decade. In the past three years, I wrote a book, got a tattoo, and adopted a cat. I fell apart, put myself back together, and changed careers. I’m three years older, but I’m also three years wiser — at least, I like to think I am.
But, while some things change, some things stay the same.
Last Monday, I went to the apple orchard with my caregiver and her daughters. It was a beautiful fall day, slightly on the warmer side, but I’m a freeze baby, so 75 degrees and sunny is my preferred weather. Elena was buzzing with excitement. Ada looked a little worse for wear with her bedhead and sleepy eyes, but let’s be real, 2-year-olds can pull off pretty much anything.
It was the perfect outing. I was well-rested, pain-free, and not even my allergies were bothering me. But I was still anxious.
The anxiety remains
Three years is a long time. I am, for all intents and purposes, healthy. Allergies are the bane of my existence, but in the grand scheme of things, I can deal with chronic sinusitis. However, the fact remains that I live with a progressive disease. I am always declining. I am always getting worse.
The last time I went to the orchard, I was worried about keeping up with my caregiver. Gravel and motor wheelchairs don’t mix. Grass is tolerable, unless we’re talking uneven orchard rows. I didn’t want to slow my caregiver down, but I was equally afraid of exhausting myself.
Then 2020 happened. The world went into lockdown, and as a result, I stopped going places. I spent my days on the computer, working on my book or complaining about working on my book. Little by little, I forgot how to navigate the world outside my window.
If going to the orchard in 2018 was hard, going to the orchard in 2021 was arduous.
My arms are weak; my hand falls off my controller. Compared to the smooth hardwood of my bedroom suite, the outdoors is rugged, with rocky hills and half-concealed potholes. It’s unfamiliar terrain. I feel like a toddler again, learning how to walk on short, chubby legs.
In 2018, I wrote, “It’s hard losing abilities you’ve had all your life. … I am no stranger to loss. But sometimes I forget how difficult it is to accept a new normal — especially when a new normal is significantly less than what it used to be.”
I’m on Evrysdi (risdiplam) now, so the loss is blunted. If the treatment works as intended, I won’t decline much more. The abilities I have in 2021 are the abilities I’ll have for the rest of my life (knock on wood). There’s a relief in that, in knowing that things can’t get worse. But it’s still hard. It’s still a thing of grief.
Showing up is hard. But I do it anyway. I trek through the orchard in my overalls and fall boots, Ada perched on my footrest. It’s excruciating at times — the gravel beneath my wheels, twigs caught in my motors. But sometimes it’s perfect. The sun is high in the sky, I’m surrounded by people I love, and most importantly, there are doughnuts waiting for me in the store.
The anxiety remains. What if I hit a bump and my caregiver can’t hear me calling for help? What if I catch COVID-19 from a stranger in the checkout line? What if Evrysdi doesn’t work, and this is the last time I’ll pick apples with my favorite girls? But three years is a long time. I’m wiser now, and medicated. I’m seeing a different therapist, but my counselor’s words are still true.
Feel the anxiety and do it anyway.
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.