Category Archives: Occupying

My “Summer Vacation”

Posted on August 22, 2017 by Jennie Spotila

What I’ve done on my “summer vacation” has not been fun. I’ve had a rough couple of months. Non-ME health issues have gobbled up most of my capacity, and I’m still feeling the repercussions. I’m not ready to talk about … Continue reading →

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Funding Unrest

Posted on August 12, 2017 by Jennie Spotila

Four years ago, I wrote that Jen Brea’s film, then titled Canary In A Coal Mine, could be a defining moment in ME advocacy. Today, we stand on the threshold of a watershed moment for our disease, and Jen is … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , | 11 Comments

Best In Show Blog

Posted on July 17, 2017 by Jennie Spotila

I am excited to announce that for the third time, Occupy ME has been nominated for the Best In Show Blog award in the WEGO Health Awards! Now we enter the part of the process where you can influence the … Continue reading →

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Guest Post: Sickaversary

Posted on June 1, 2017 by Jennie Spotila

My friend, Jenny R, wrote these profound words about her sickaversary. 10 years and 4 days ago today I got sick and never got better. I wrote this to commemorate it: I want to write something incredibly profound and moving … Continue reading →

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Book Review: Growing Gills

Posted on May 15, 2017 by Jennie Spotila

I usually focus my book reviews on titles that are directly related to ME, but I’m making an exception today because I want to tell you about Growing Gills by Jessica Abel. This book is about creativity, not disease, but … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , | 12 Comments

Missing, Not Marching

Posted on April 22, 2017 by Jennie Spotila

I should be marching right now. I mean, I had my plans all worked out. #MillionsMissing tshirt? Check. Wheelchair wheels freshly pumped up? Check. Water and food? Check. Ride to March? Check. Kick ass awesome sign made by my husband? … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , , , , | 31 Comments

Help My Sign!

Posted on April 17, 2017 by Jennie Spotila

I am suuuppppperrrrr excited for the March for Science this Saturday, April 22nd. I am doing everything humanly possible to attend. I’ve got extra rest scheduled this week, and a backup ride the day of the March (in case ride … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , | 62 Comments

A “Standard” Patient

Posted on March 13, 2017 by Jennie Spotila

Today, Joe Landson shares his experience as a standard, real patient. I work occasionally as a standardized patient, though there is not much standard about me. Standardized patients are actors; we play out a script of symptoms for health care … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , | 16 Comments

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 →

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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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