This Year, I’m Reclaiming My Ability to Live in Community
Fighting my insecurities about finding friends, and then trusting them
Like my mother before me, I’m an avid collector. Books, rings, blankets I’ll probably never use — as a child, I even collected those souvenir spoons found in historical gift shops across the U.S. I like stuff, and I like to display my stuff.
In “May I Suggest #5: Break Up With Beliefs,” Mari Andrew compares her brain to “a mansion of obsessions,” full of “various rooms each with a different purpose defined by fixation, and a collection of dusty, difficult-to-find objects to support that purpose.” In other words, her brain stores all sorts of collections. While some are benign, some are harmful and lead to the perpetuation of what mental health professionals call “self-fulfilling prophecies.”
This past month, I’ve been dissecting my own self-fulfilling prophecies: the stories I tell myself that limit my ability to engage wholeheartedly with the world. Last week, I wrote about my relationship with dating and how I’m determined to “break up” with the narratives that are holding me back.
This week, I want to talk about something a little closer to home.
My mansion of obsessions
I love how Andrew describes the former home of Marjorie Merriweather Post: “a stunning, strange, intricate house, and a bit creepy in its devotion to various obsessions.”
I, too, am a bit creepy in my devotion to various obsessions. Convinced of my shortcomings, I collect evidence of what I believe to be my own unworthiness.
My lack of a romantic relationship.
My lack of a full-time job.
These collections support different stories. Obviously, my lack of a romantic relationship means I’ll never find someone willing to look past my disability. And my lack of a full-time job means I’m failing at this thing called adulthood. Other SMA folks have careers, so why don’t I?
Each obsession is nefarious in its own way. But there’s one in particular that sticks out, the collection so large I had to turn the upstairs bathroom into a secondary storage closet.
I will never have friends
I’ve always struggled to make friends. I remember spending a good chunk of recess by myself, watching from a distance as my classmates chased one another around the playground. Part of it was the wheelchair — I couldn’t exactly swing from the monkey bars. But most of it was me.
I knew I was different. And that knowing bled into every part of my life. I felt so abnormal, so strange and alien, that I cut myself off from the people around me.
By the time I started high school, I was convinced that I’d never have friends. It was simply a fact of life — undesirable, but undeniable, just like my disability.
You can imagine my surprise when I did, in fact, make a friend. It rocked my world. I was so grateful that I resolved to do anything — anything — to preserve the friendship, even if it meant abandoning myself. I fell into deeply destructive patterns, all because I was afraid.
All my friends secretly hate me
The older I got, the more people I befriended.
Logically, I knew they liked me. Why would they spend time with me if they didn’t? But I couldn’t just ignore the evidence I’d collected over the years.
Maybe I wouldn’t be alone forever. But evidence pointed to the fact that something was still wrong.
With time, my limiting story adapted to reflect this knowledge. “I will never have friends” became “All my friends secretly hate me.”
No one actually wants to befriend someone in a wheelchair. They’re just doing it out of pity. Either they feel bad for you or want to feel good about themselves for hanging out with the disabled. It’s not genuine; it’s not real.
It has taken me years of hard work — not to mention the love of some particularly stubborn people — to unlearn this kind of thinking. To accept that people in my life are there because they want to be. But it’s still hard.
Showing up wholeheartedly
It’s hard, and if I’m honest, I’m still learning.
I’m blessed with a robust support system and people who see the truth of me. But there are moments.
Obsessing over what people think of me.
Operating from the assumption that things won’t work out, so I shouldn’t even try.
Giving a fraction of myself to the people I love out of fear that I’ll be seen as “too much.”
This year, I’m airing out these dirty, dusty rooms and stepping into the sun.
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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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