I've really struggled to write this post. In my head, when I sat down to write this, the words would flow easily—naturally—as if they were always meant to be aligned in the order I'd put them; it would feel effortless.
But how do I write about the worst year of my life (thus far) effortlessly? How—when the story itself is so messy, when I'm still in the thick of it, when the passage of time has ceased to make sense or feel meaningful—can I even begin to reflect?
I lost so much last year. I hesitate to say how much, to name my losses. I've been hesitating for awhile. The hesitation is largely protective. If I share how much I've lost, I have to deal with how that loss is understood by others when I'm not sure I yet understand it. If I share how much I've lost, I have to cope with my loss. If I share how much I've lost, I have to realize it's lost. It seems easier to keep things unsaid.
I did a lot in 2019. I embraced change, though not necessarily by choice. When met with quickly-changing needs, I responded equally rapidly to accommodate them. I started using a cane to prevent falling due to presyncope, got a new job that better meets my needs and allows me to work from home, completely changed what I eat, left a medical provider who was giving me bad care, found multiple new doctors to support me, had a tilt table test, had a gastric-emptying study, had two upper endoscopies, started seeing a dietitian, tried multiple gastroparesis treatments to see if they'd help, stopped exercising to avoid calorie burn and overwhelming fatigue, started going to physical therapy, tried multiple stress relief techniques, replaced much of my wardrobe so I wouldn't have to keep wearing too big of clothes, started keeping a food diary. I lowered my tolerance for bullshit. My patience, already thin, withered away like my appetite. And I have no shame or judgment around this—only compassion. Why would I want to spend the little energy I have on bullshit? I practiced being more assertive and set better boundaries. I shifted my priorities to match my changing needs.
What I didn't do in 2019 was mourn.
I saw conversations on Twitter this week about how what you do on 1 January sets the tone of your year. I don't know if I believe that—time doesn't really make sense to me anymore—but if it is true, I want to spend more time this year pausing and recognizing how hard this is. Because it's really fucking hard.
I lost so much last year and it's time to say how much.
- 15% of my body weight
- an understanding of and connection to my body
- some of my favorite clothes
- the ability to enjoy food
- the ability to eat without obsessing about food
- the ability to not worry about what my next meal will be
- unpuréed fruit
- unpuréed vegetables
- nuts and seeds
- pain-free days
- spicy food
- nausea-free days
- a lot of energy
- cardio exercise
- the ability to maintain light friendships
- some friends
- the ability to drink alcohol
- the ability to ride my bike
- a lot of memory
- the ability to stand up from lying down without falling
- food-based gatherings altogether
- the ability to work in an office
- the ability to fully enjoy a hot bath
- stress-free travel
This likely isn't a complete list. Brain fog makes documenting this sort of thing difficult.
Listing these out doesn't make it any easier for me to accept their absence in my life. I don't believe in closure. Instead, I think we just get better at relearning how to live. Which, I suppose, is what I'm trying to do.