When I was diagnosed with Miserable Malalignment Syndrome (MMS) way back in 2015, it felt like a mystery disorder that only I was experiencing. In the lead-up to my leg reconstruction, I scoured the internet with a desperate hope of finding someone, anyone, to talk to regarding what I was about to go through. I had so many questions but no matter how thoroughly I searched forums or reddit or the blogosphere at large, I couldn’t find answers.
With that in mind, I intended to keep a blog about my experience in hopes that someone taking this journey after me wouldn’t have to share my fear of the absolute unknown. That high-effort goal was mostly lost to the swirling vortex of trauma and recovery, but I did make one post—a catch-all explanation I could share with the myriad people who felt compelled to ask “what happened to your legs?” and “how long until you’re walking again?” It was a short post focused on my immediate hospital experience and it didn’t accomplish any of the things I had originally intended. And yet, in the ensuing five years, I’ve received innumerable messages, comments, and emails from both patients and parents staring down the barrel of MMS who have stumbled upon that page.
While I love to connect with each of you individually (and will continue to do so), the emotional weight of reliving my experience through the hopeful eyes of another is...well, it’s a lot. I’ve decided that we could all benefit from a Miserable Malalignment FAQ page where the answers to my most heard questions can live. Hopefully, this post will cover the MMS Greatest Hits. If you’re on facebook, you can also join a group called ‘Miserable Malalignment Syndrome Discussion Group,’ which is small but may be able to answer questions that I cannot.
I’ve added section links up here to help you find what you’re looking for if you feel like skipping around, but you can also scroll and read the whole thing. If you have questions about anything unaddressed here, you’re welcome to leave comments on any of these posts or shoot me a direct message over on Instagram.
* I also want to highlight up front that several years after this procedure, I was diagnosed with a previously unsuspected connective tissue disorder so put a big ol’ asterisk on everything that may not apply to you.
