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  • Living with SMA Sometimes Means Recognizing Your Own Brokenness

    Posted by brianna-albers on May 14, 2019 at 7:00 am

    Happy Tuesday, everyone! My latest column went up yesterday, which is a little more philosophical than usual, maybe because I have time to reflect now that I’m off school. I was thinking about some of the standards I have for myself and how illogical they are. We’re generally harder on ourselves than we are on other people but, in my experience, SMA only heightens my desire for perfection. I don’t like to admit defeat. People in my life are allowed to struggle, and of course, I’m more than happy to support them, but when it comes to my own issues, I’m far less understanding.

    I’m sure a lot of this has to do with my training. I spend a significant amount of time thinking about mental health, and specifically how mental illness intersects with disability. I probably overthink things, if I’m being honest. But I like examining my own behavior! I’m always trying to “get better,” especially if it means I’ll be a little kinder to myself.

    Is this something you can relate to?

    ryan-berhar replied 4 years ago 3 Members · 2 Replies
  • 2 Replies
  • deann-r

    May 21, 2019 at 12:04 pm

    Thanks for sharing your article. I haven’t commented on it yet because I’m having trouble putting my thoughts together. Maybe I’m not getting your point of view but I’m not sure brokenness is something I personally can connect with. In my situation I don’t really consider having SMA as being broken because to me that implies needing fixing and in my opinion there’s no real fix to it. Cheesy metaphor coming up…sometimes I see everyone else as a Ferrari and I’m just a jalopy needing a lot of work. Still, as long as the engine is running I’m not broken. To keep running a lot more maintenance is required, even then I don’t always run smoothly, occasionally sputtering along. I can get dressed up with all the bells and whistles but I’ll never be that Ferrari. Here’s the thing, even a Ferrari needs work to keep running and some can be a real mess. Who knows, maybe if I keep up the maintenance I’ll figure out I’m the vintage VW Beetle that’s actually a treasure. If not at least I’m still running.

    In your article you ask what happens when the glue dries out. When I notice my glue drying out I add a little water (can be time, patience or any number of things) to thin it out. The hold might not be as strong but it’ll still hold. If I don’t catch it in time there’s no harm in borrowing some glue until you can replenish your supply.

    • ryan-berhar

      May 21, 2019 at 7:07 pm

      DeAnn, you make a super interesting point here. I’m going to ponder this for a while and comment later.