I Get Knocked Down...

But I Get Up Again

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Disability and Determination is a weekly newsletter about my experience living with a rare disability…with a little bit of meditation, pop culture, and other random things thrown in. If you like this post, give me a like with the ❤️ symbol below. This will help me get discovered by others on Substack. Drop your email in the field at the bottom and click the Subscribe button to be notified of future posts, or if you want to contribute, I offer a paid subscription option or you can Buy Me a Coffee ☕

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Little late on this Thursday post, but better late than never. It’s been another week of healthcare hell with my medical provider, so I’ve been either a) making calls or researching, or b) am too drained to write.

But I digress…I finally decided what I was going to do for my paid subscribers! Once a month I’m going to do a “Getting To Know Me” post (kind of like the last one I did) with random things about me that might pertain to my disability, but don’t necessarily. I’m likely going to do some Q&A posts too.

Lastly, even though this was a rough week, I’m going to appreciate the lessons it brought me, which are as follows:

• Don’t ever do anything that you don’t want to or don’t think you need to just because other people think it’s a good idea—even if it’s people you care about and care about you.

• Slow down on the toxic helpfulness¹, especially if you’re exercising it with people who won’t appreciate anyway.

• I get knocked down, but I get up again…literally. I fell today for the 1st time in a while but the lesson was that I was able to get myself up using the couch and table which I haven’t been able to for a long time. I also had a gratitude moment because I had my new glasses in my hand at the time, and they didn’t break! 🙌

What Made Me Happy This Week 🌞💞

• This post by

  Anne Helen Petersen
  . It’s so good and completely reframed the idea of resilience for me:

  The Resilience Myth

• Despite appearances, I finally realise I am not able-bodied’: novelist Daisy Lafarge on her hypermobility disorder - This was a really eye-opening look at both Ehlers-Danlos syndrome (which I had never heard of before) and what it’s like having that as an NHS patient in the UK.

• In the spirit of the Chumbawamba “Tubthumper” reference I made earlier and in the subject, here’s the video for your listening enjoyment. God, I miss the 90s.

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Defined as helping people even though they didn’t ask for help, and/or helping them with something they’re perfectly capable of doing on their own.