I’ve been thinking a lot about joy, both in my personal and professional life. The vision of the organization I work for is to create a world where all students know, use, and enjoy mathematics. So recently we’ve been discussing how to better center the “enjoy” part of that phrase in our work. 15 months into significantly disabling chronic illness I’m also taking time to reflect on what joy looks like in the life I’m currently living. While my primary goal is to not get worse, that’s not my only goal. Just below that is a commitment to not wallow in grief over all the ways my life has changed. Chronic illness requires finding ways to live with symptoms. I can continue to trial new medications or treatments, and simultaneously spend my time adapting the rest of my life to fit within my current abilities.

If you asked me what brought me joy prior to getting long covid I might have said:

• My puppy
• Spending time with friends and their kids
• Celebrating holidays with family
• Hiking, especially letterboxing (https://www.atlasquest.com/)
• Crafting, mostly crochet
• Puzzles, jigsaws and escape rooms and word games, board games
• Reading
• Going to movies or a show, watching TV
• Work, writing
• Learning new things

It’s felt like a lot of that is impossible, which it is. And, many of these moments of joy are still available on a smaller scale. I’ve reached the point where I’m okay with quieter moments of joy, I’m still enjoying my life even if it’s not the big flashy adventure it once was (this is half sarcastic, I’ve always been a deeply introverted homebody, and still true in comparison to how I’m living now). This shift feels like a normal part of aging, though my experience is certainly a case of my body limiting me younger and more significantly than is typical.

• My puppy – we’re not going on hikes, exploring new places, or attending classes with other puppies. We’ve both settled down and enjoy quiet days on the couch with walks around the neighborhood and short play periods in the living room. He gets to go to daycare twice a week to run around. He’s still adorable and cuddly and surprises me with his intelligence. I appreciate his joyful bounce every time I offer him a treat. 
• I missed food on my first list, I also have a joyful bounce when I get myself a tasty treat! It doesn’t have to be at a restaurant (honestly they were mostly noisy which is strenuous for my hearing and my introverted self) – I can get takeout or make something or enjoy a meal someone else made for me. Opening my soup Wednesday delivery box each week is an exciting surprise since I’ve always forgotten what’s on the menu by the time it arrives.
• Spending time with friends and their kids – this is often joy seeing photos of those kids rather than interacting with them directly. Spending time with friends is also a quieter event, sitting on my deck rather than going out. I really love my deck, today is one of the last warm days so I’m writing this outside. 
• Celebrating holidays with family – this requires advanced planning to space out travel, and we’ve skipped some of them, but now my parents come visit me a lot more often so we’re averaging more time spent together than previous years.
• Hiking, especially letterboxing (https://www.atlasquest.com/) – there’s more time spent sitting outside than walking, and more time spent walking on flat ground than hiking. The trees are still pretty and the clouds are still fluffy. The goal is finding a photo to add to my instagram story rather than locating a stamp hidden in the woods. Still exciting to capture a good angle or to notice a new bloom.
• Crafting, mostly crochet – this has been replaced by playing the guitar, crafting is too vision intensive and even a simple crochet pattern that I can do without looking requires some part of my brain (motor skills? imagining what it looks like?) that causes pain. I am also enjoying the graphic design that goes into Instagram posts and stories, some of which I create in Canva which is a fun creative outlet that I can engage in without having to repeatedly refocus my eyes.
• Puzzles, jigsaws and escape rooms and word games, board games – I’m over 4,000 levels into a match 3 puzzle game. Not as exciting as completing a jigsaw puzzle, much more vision friendly. There are occasional escape room style puzzles to do on my phone (Timehop hosted a set of puzzles yesterday that I worked on with a friend) and word games (wordle, connections) are also sometimes acceptable to my brain.
• Reading – I spend so much time listening to audiobooks.
• Going to movies or a show, watching TV – again this has been replaced with audiobooks. It is really weird to have had so many “sick days” and spent none of them watching TV. This is the classic occupation of sick people. It’s visually painful and also audio description is too much for my brain (many people talking plus description plus soundtrack is overwhelming).
• Work, writing – sometimes work is just frustrating to sit in meetings about things I can’t do, but work was never all joy. I’m ejoying the opportunity to discuss joy, to share my experiences, and to bring new perspectives in accessibility. Writing hurts my brain and I’m doing it anyway because it’s worth it! It’s nice to type on a keyboard again. 
• Learning new things – doing so much of that! All my science knowledge (okay, not all, I still haven’t used organic chemistry for anything, which doesn’t decrease the joy I experienced taking that class) has come in handy as I both attempt to understand what others have learned about my conditions and run my own experiments.

My new years resolution starting 2023 was to post a daily joy photo. I did for many days and then it started to feel fake. I was indeed finding joy in the sunny spot on my couch, or my neighbor’s flowers, or the particular way my puppy was sleeping. And I was also in pain, experiencing fatigue, frustrated with doctors not understanding my symptoms (that I’d learned all about and could diagnose!), and unable to do basic tasks without accommodations and rest. Now that we are approaching the end of 2023 (it’s November next week!) I’m embracing a both/and perspective. I can share the picture of the tree with bright red leaves, with text explaining how season changes impact my symptoms. I can turn a frustrating conversation where a doctor dismissed my concern into some speech bubbles on a pretty background. I’m still working on mindfully enjoying a cup of tea (I have a habit of putting the leaves in to steep, leaving the mug on the counter, and then forgetting to stand back up to do the next step) because as much of my day as I can spend not actively thinking about my symptoms, the better regulated my nervous system will be (which is as close to treatment as we get for dysautonomia until someone can identify what the underlying triggers are). And I can make my social media be an honest reflection of my reality. Luckily community building and education have always been my thing, so I truly do enjoy spending my time talking about all the new things I’ve learned about my body, disability, and the overlapping systems we live within. 

Here’s to finding more joy going forward, and being honest about how that joy intertwines with the rest of our experiences. I listened to an audiobook, where a kid* said that it seems like adults feel more than one thing at a time. And as the book went on she was able to identify overlapping emotions she felt simultaneously. I love this as a characteristic of maturity – recognizing the complexity of living. (*It was Maya in the “Winter in Paradise” series by Elin Hilderbrand. If you end up reading it and find the quote please let me know!)