Adventures, Winging It, and the Dangerous Business of Going Out Your Front Door

Adventures, Winging It, and the Dangerous Business of Going Out Your Front Door

brianna albers
A few years ago, right around the time I started college, I fell into the deep, dark hole that is depression. Not knowing what the hole of depression usually looks like, I had no way of pulling myself out. So I just sat at the bottom for the longest time, buried in dirt and grief.

I found some old journal entries the other day from that period, and it’s strange looking back. So many things have changed, but at the same time, so many things have stayed the same. The details are different. The minutiae. But the overarching theme — the things I struggled with, the aches and pains, bodily or otherwise — is, I think, recognizable. It’s all cyclical. That tiny little hamster wheel. Prometheus laboring beneath the weight of an immovable stone.

I say all this because, strangely enough, I find comfort in the cyclicity of it. If I made it through 2014, I can make it through 2017 — my own survival is irrefutable proof. The things I found solace in back then can bring me comfort now. And they have been.

In one of the entries, I talk about a class I was taking, which was all about myths, modernity; how myths and modernity interact. We were studying “Lord of the Rings,” and my professor said something that stuck with me: “We are given the adventures we’re ready for.”

A couple weeks ago, I wrote about normality, how normality is a farce. I’ve never been able to reconcile my disability — my abnormality, which is so integral to who I am — and my desire to be “just like everyone else.” I recognize the limits of this physical body, but that doesn’t make it any easier to accept. It doesn’t make the strangeness, the wonderful weirdness, of my life any less cruel.

How do I survive, let alone thrive, with a condition that is so often debilitating, that so often destroys any semblance of normality by virtue of its diagnosis? So much of “life with a disability” is unexplored territory. You ask someone with the same condition how they’ve managed to get through life and they say, I don’t know,” because there’s no right answer. No pre-approved plan of attack. You just … wing it, to the best of your ability.

I’ve been winging a lot of things lately. Trying to figure out what it looks to be an adult under my parents’ roof. Trying to negotiate long-term care. If something were to happen to my parents, what would happen to me, and who would take care of me until the dust settled? Should I try living on my own? So many questions, nowhere near enough answers, and then there’s the part of me that feels like a failure for not having this locked down. Everyone else is doing fine, so what’s wrong with me? What am I doing wrong?

I keep expecting things to be simpler than they are. My disability complicates things, and it eliminates the possibility of leading a “normal” life. There’s no timeline for me to aspire to, no step-by-step life plan of graduate, get married, have kids, retire. Everything is up in the air. And sometimes it feels like an adventure I have no desire for. I feel a bit like Bilbo Baggins: Sorry! I don’t want any adventures, thank you. Not today. Today I want to graduate college, and then tomorrow I want to get married, and then the day after that…

So, that journal entry popped up at just the right time. We are given the adventures we’re ready for. I don’t know if it’s true or not, it doesn’t always feel like it. But it’s a comforting thought, that somewhere inside me is the strength to get through this.

Whenever I’m in the pit, I’m reminded of my favorite LOTR quotes. “I wish the Ring had never come to me,” Frodo says. “I wish none of this had happened.” And Gandalf says, “So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.” And Frodo again: “I will take the Ring, though I do not know the way.”

Sounds a bit like Frodo’s winging it, too.

So, I take the adventure I’ve been given. I take it with trembling — but earnest — hands. And I choose to believe I’m ready for it, for the dangerous business of going out my front door.

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

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