Thank you. How you write about existing in the ongoing pandemic as someone with the lived experience of what a body can stop (and start) doing makes me feel a lot of things, including so seen.
To say I feel all of this in my blood and in my bones is an understatement. I am grateful for your talent to express the wildly complex and challenging experiences us Lonnng Long Haulers have. You weave the expression of this experience together with other art and philosophy and thinking in such an adept way, it probably belies your spoons and effort to do so. Thank you for giving your precious energy to this, to us.
Thank you so much for writing this! I saw a patient this morning, a teenager, who’s still suffering from aftereffects of Covid and complications, and I could definitely feel the frustration at the doctors who consider themselves infallible until they don’t, and then they give up instead of getting creative. And it’s so hard to be vulnerable and show what you’re going through instead of hiding it.
Heather, your writing has guided me through some tough times this past year, and this piece is no exception. It’s incredibly powerful and very brave. As a fellow person with a mysterious-to-doctors chronic illness, who has been sick (to various degrees of functionality) for the last 20 years, here are two things I have learned that may resonate with you:
1. Illness can wax and wane, as you find different doctors, try different things, or stumble upon something that makes you feel less awful for a stretch. In some of those moments, you may have access again to the things you lost. I once went so long without touching my art supplies that all my paints dried up, but I did get back to creating.
2. One of the first doctors who ever believed me once said “you will never get back to 100%, but after where you’ve been, 80% is going to feel pretty great.” A part of me still mourns what I had when I was my healthiest, but he was right: the days when I can get 80% of the way there feel miraculous.
Thank you. How you write about existing in the ongoing pandemic as someone with the lived experience of what a body can stop (and start) doing makes me feel a lot of things, including so seen.
To say I feel all of this in my blood and in my bones is an understatement. I am grateful for your talent to express the wildly complex and challenging experiences us Lonnng Long Haulers have. You weave the expression of this experience together with other art and philosophy and thinking in such an adept way, it probably belies your spoons and effort to do so. Thank you for giving your precious energy to this, to us.
this is incredible. thank you.
This brings tears to my eyes. The beautiful truth of the mortality of all things - the inescapability and wonder possible because of change.
Love you. 💜
Love you back! 🧡
💛
So much vulnerability and truth. Thank you
Thank you so much for writing this! I saw a patient this morning, a teenager, who’s still suffering from aftereffects of Covid and complications, and I could definitely feel the frustration at the doctors who consider themselves infallible until they don’t, and then they give up instead of getting creative. And it’s so hard to be vulnerable and show what you’re going through instead of hiding it.
Love this. Thank you. 🩷
Yes. Yes. Thank you.
Heather, your writing has guided me through some tough times this past year, and this piece is no exception. It’s incredibly powerful and very brave. As a fellow person with a mysterious-to-doctors chronic illness, who has been sick (to various degrees of functionality) for the last 20 years, here are two things I have learned that may resonate with you:
1. Illness can wax and wane, as you find different doctors, try different things, or stumble upon something that makes you feel less awful for a stretch. In some of those moments, you may have access again to the things you lost. I once went so long without touching my art supplies that all my paints dried up, but I did get back to creating.
2. One of the first doctors who ever believed me once said “you will never get back to 100%, but after where you’ve been, 80% is going to feel pretty great.” A part of me still mourns what I had when I was my healthiest, but he was right: the days when I can get 80% of the way there feel miraculous.
I have ME and reading this was very deeply moving. I love you and your writing so much 💜
Wow. Yes. Thank you.