Favorite Reads of 2023
Occupy M.E.
by Jennie Spotila
2M ago
Listen, I know that everyone posted their favorite books of 2023 already. I wanted to as well, but my recovery from breast cancer surgery took longer than I anticipated, and now I’m getting radiation treatment. However, I still really want to share the books I loved last year, and since it’s still January, I think this is valid. I’ve gotten more intentional about reading in the last few years. I used to just pick whatever book I felt like reading, without trying to hit a reading goal or focus on a specific list. I didn’t keep a book journal, so I tended to forget not only what happened in book ..read more
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Enough
Occupy M.E.
by Jennie Spotila
3M ago
I’ve been waiting until I felt well enough to post about my breast cancer surgery and recovery, about the treatment I will begin in January. I have words to say about experiencing the healthcare system as a person with cancer versus a person with ME. And maybe I will write those words at some point. But none of that matters to me tonight because my friend Beth Mazur is dead. Beth was a co-founder of #MEAction, a data scientist turned advocate by necessity. She was also a shining example of the very best, the best ME advocates and the most wonderful people. To me, Beth was always rock stea ..read more
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“I have cancer”
Occupy M.E.
by Jennie Spotila
4M ago
I told my husband last week, “It’s just as hard to tell people you have cancer as it is to find out you have cancer in the first place.” So, let me take a deep breath and say: I have breast cancer. Everyone reacts with some degree of shock and sadness when I tell them the news. I feel like I’m hurting their feelings by saying it, like I’m responsible for upsetting them, even though having cancer is not my fault. In an attempt to soften the blow, I focus on the good part of the bad news. I have Stage 0 breast cancer: ductal carcinoma in situ (DCIS). This means that the cancer cells are still c ..read more
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Occupy M.E.
by Jennie Spotila
6M ago
I got sick on October 6, 1994. Writing a memoir that spans almost three decades requires a lot of self-reflection, not only about what I’ve been through but about the choices I made, what I got wrong, and what I could have done differently. Sometimes, looking back feels like looking at a different person. I feel such compassion for the young woman who got sick twenty-nine years ago. She was building her career, and was newly in love. It makes sense that she trusted the doctor who said she had a virus and would feel better in a few weeks. Twenty-four years ago, her doctor said that people with ..read more
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Ed Yong Made Me Cry
Occupy M.E.
by Jennie Spotila
6M ago
There I was, reading Ed Yong’s latest newsletter, and wondering if I had the energy to go downstairs for a cup of coffee. Near the end, Yong listed his upcoming appearances along with an invitation: Come say hi; please wear a mask. And I burst into tears. It’s such a simple request, “please wear a mask,” yet no one is saying it anymore. Most of the healthcare personnel I interact with no longer mask, and neither do many of my beloved family and friends. The general public in suburban Philadelphia gave it up long ago. And who can blame them, when this is the message being trumpeted by our gov ..read more
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Lightning Book Review: Crip Up The Kitchen
Occupy M.E.
by Jennie Spotila
10M ago
I’ve loved to cook since I was a kid. I wanted to grow up to throw fancy dinner parties like my aunt, complete with appetizers and an elaborate dessert. And I did give some pretty awesome dinner parties, with menus and coordinated table decorations and so on. Then I got sick with ME. I still love to cook, but now it’s a Chore. Some days I’m too sick. Some days I have the energy to cook, but I have to make a choice between expending my energy there or something more fulfilling. I’ve tried batch cooking and freezing meals ahead. I’ve tried eating the same meal three nights in a row. I’ve tried t ..read more
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Favorite Reads of 2022
Occupy M.E.
by Jennie Spotila
1y ago
Books are one of my favorite things, and I love to talk about them. Every reader is unique, of course, and we each have a wheelhouse–characteristics that will make us love (or hate) a book. Maybe you love stories about magical portals (I recommend The Ten Thousand Doors of January) or LGBTQ romance (definitely read Red, White and Royal Blue). Maybe you can’t stand purple prose, or you can’t focus well enough to read non-fiction. What I want most in a book is to fall through the page. I want to forget I’m reading and just be in the story or the author’s thoughts. Yet I also read for craft. Why ..read more
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New York Magazine Article Biased and Riddled with Errors
Occupy M.E.
by Jennie Spotila
1y ago
Today I sent the following email to the Editor of New York Magazine: As a reader of New York Magazine, I have come to expect your articles to be accurate, well-researched, and fair. Unfortunately your recent piece, “Has Long COVID Always Existed?” by Jeff Wise is none of these things. As someone familiar with the topics covered, I can tell you that the article is misleading, biased, and riddled with errors. Worse, it exacerbates longstanding misconceptions that people with ME/CFS and Long COVID must overcome when seeking effective care, and it risks reviving myths about this condition that I a ..read more
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How to Avoid Covid
Occupy M.E.
by Jennie Spotila
1y ago
For the first time in three weeks, I live in a Covid-free house. Day 0: My husband was the first to get sick. He woke up with severe congestion and a headache, but tested negative for Covid on an antigen test. In an abundance of caution, I put on an N95 and he began isolating in our bedroom. Two relatives staying with us chose not to mask. I set up a table in the hallway so that I could deliver meals and medication to him contact-free. We all expected him to test negative the next day and then he would be able to rejoin us. The next morning he had a fever and tested positive. Day 1: He called ..read more
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In The World
Occupy M.E.
by Jennie Spotila
1y ago
I have spent more time in public in the last month than I have in two-and-a-half years. We were having some work done on the house, and I could not stay there in the midst of the noise, dust, and chemical smells. So, I relocated to a hotel in a nearby community for a few days, but I may as well have been on a different planet. For the entirety of the pandemic, I have taken safety precautions very seriously. I am at high risk for severe complications if I catch COVID-19. My doctor said that my biggest risk is a worsening of my ME and disability. Friends, I am disabled enough. I’m willing to ..read more
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