Tag Archives: suffering

The Cut

Posted on March 17, 2017 by Jennie Spotila

Trump’s proposed budget is out. Among all the cuts – because you have to cut in order to increase defense spending while simultaneously giving the rich a tax cut – among all these cuts is one that people with ME … Continue reading →

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Resist. Persist.

Posted on February 21, 2017 by Jennie Spotila

Am I the only person who feels like she is in a leaky boat, surrounded by sharks? Pretty much every time I look at Facebook, Twitter or the news, I find another leak in the boat. And when I look … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , | 19 Comments

CFSAC Public Comment, January 2017

Posted on January 18, 2017 by Jennie Spotila

I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks. Start … Continue reading →

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Another Reason to Stay

Posted on January 11, 2017 by Jennie Spotila

My Mom played the cello every day, even while enduring chemotherapy. Her last lesson was less than two months before she died. Mom loved the cello, but I never really understood her dedication. Even when I took piano lessons as … Continue reading →

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The Wall of Nope

Posted on December 7, 2016 by Jennie Spotila

I have reached a new low in life with ME. I call it: The Wall of Nope. The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things. Here’s an example: I’m … Continue reading →

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Tasha

Posted on October 14, 2016 by Jennie Spotila

There are many beautiful, powerful images from the September 27th Millions Missing protests. My friend Tasha spoke at the #MillionsMissing New York City event, and I’m proud to share her comments with you here. Hi, my name is Tasha and … Continue reading →

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Still #MillionsMissing

Posted on September 27, 2016 by Jennie Spotila

Today is another, larger #MillionsMissing protest, and I am missing it. I miss a lot of things. One of the best things I ever did in my life was to drive cross country, camping in national parks. It changed my … Continue reading →

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Pretty Much the Worst

Posted on September 9, 2016 by Jennie Spotila

One of the worst things someone said to me recently about my disability was: With all the stuff you’re doing, you work just as hard as someone working full time. The charitable and loving way to interpret this statement is: … Continue reading →

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Brilliant Scientist Among the #MillionsMissing

Posted on May 25, 2016 by Jennie Spotila

My friend Barb opened a window into the extraordinary loss she has endured because of ME/CFS. Please read her powerful statement, and count her among the #MillionsMissing. If you want a tiny peek into what I live with every day, … Continue reading →

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I Am Among the #MillionsMissing

Posted on May 25, 2016 by Jennie Spotila

I miss hiking. Getting into the woods, to the enveloping strength of nature, was my favorite thing to do. I wanted to through-hike the Appalachian Trail. I miss more weddings, graduations, and funerals than I can count. I miss having … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , | 13 Comments