Weekly Update #9


This week the kittens knocked over the box that contains my medical records from years past. Here’s 2015-2017 in chronological order from top to bottom (2018 was spared, luckily). I expected the process to bring up a lot of emotions; I tried to only look at dates to ignore the rest of the page to protect myself. When I did read something and it made me try to remember that visit or procedure I was just surprised by how long ago those things occurred, not upset by them. It is weird to see these tangible measures of the past few years.

I invited a discussion on Instagram this week about fatigue vs laziness. It ended up being a reminder of how far removed I am from the life of a healthy person. Lots of people talked about how they opt out of busy-ness as status or feeling like productivity is a measure of their worth. I remember having those kinds of thoughts, too, when I was healthy. For me the prompting moment was that I didn’t want to walk several rooms away to retrieve an item for my to do list, and I thought of myself as lazy. I was only a week out from a chemo that made me extra tired and had just finished a weekend of solo parenting. My chemo doses are scheduled two weeks apart because the drugs are still having effects on my body through that second week. I long ago opted out of nearly every optional obligation, so I was feeling lazy for not having the energy to do basic necessary tasks on a day when my fatigue was high. It made me realize how much I expect these off weeks to be (my version of) productive and that I don’t bring the generosity I give myself during treatment to these off times. Even though logically I know I shouldn’t expect to be recovered, I want to be and find myself frustrated when my body needs more than I want to give. I truly appreciate everyone who commented; I did not ask the discussion be restricted to those who know chronic illness. But it was one of those moments that makes illness isolating. My healthy peers truly can’t know what this experience is like.

This weekend is one of my favorite of the year – the New York Sheep and Wool festival, also known as Rhinebeck. I grew up in upstate NY and being there is homecoming to my senses. I wear all my favorite woolens and eat beloved childhood foods and visit with my amazing fiber community and do a little shopping, too. I am looking forward to letting my soul bask in the moments.

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