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Advocacy and Acrimony in the ME/CFS Community

August 14, 2020

I’ve never disagreed with anyone on the fact that our illness needs more research funding and more treatments. These basic needs will never be disagreed upon within the community, and it is especially important to remind ourselves of that when things get heated.

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A Little Energy DOESN’T Go a Long Way

July 27, 2020

If there’s one thing that I’ve struggled with the most while I’ve been sick, it’s finding a balance between doing things I enjoy and doing things that don’t make me sicker. It’s especially hard when almost everything I do either steals my energy, fills my muscles with pain, or makes me feel like I’m going […]

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How to Ruin a Mattress . . . And Other Things I’m Good At

June 16, 2020

I’ve been on a hunt for the best mattress for a disabled person, like me, ever since I ruined my last several mattresses. How exactly does one ruin a mattress? The obvious guess might be to have lots and lots and LOTS of sex. And as fun as that would be, I’m not convinced it […]

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Advocacy Coalition: A Day Late and a Hundred Million Dollars Short

May 13, 2020

It’s hard to be hopeful that a cure for ME/CFS will be found when the entire world is looking for a cure for a different illness.

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All Work and No Quarantine

April 13, 2020

It’s hard for me to fault people like this, people who try to go about their jobs and daily lives, unfazed by the reality of a deadly virus. It’s hard for me to fault them because, once upon a time, I did the same thing.

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Fear and Social Distancing in Quarantine

March 23, 2020

I hope everyone remembers what it was like, how it felt to live in this strange alternative universe of fear and social distancing. I hope everyone remembers it because some people will have to keep living it.

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A Veiled Attack on Disability Rights

February 27, 2020

My first job was working the front desk at a gym for minimum wage, long before disability rights were on my mind. I scanned member ID cards, re-racked weights, and cleaned the entire gym — wiping up people’s saliva from the sinks and their sweat off the treadmills, sanitizing the toilets and showers, and picking […]

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Talking Without Speaking and Dreams of Old Friends

January 27, 2020

The need to speak my mind, and the heartache of not being able to, has only made the moment more palpable, more intense and full of emotion. But no amount of emotion is going to change my circumstances. No matter how hard I try, I can’t speak the words I want to say.

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My New Memoir Title: When Force Meets Fate

December 30, 2019

Last week I officially kicked off the campaign to publish my memoir, When Force Meets Fate. Originally I planned to call it Not Like The Whiskey, but I decided that was too obscure and not many people would get the significance. So I changed the memoir title and now we have When Force Meets Fate. It […]

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In an Emergency, Disabled People Are on Their Own

November 18, 2019

Each fall, for the last few years, I’ve lived on edge, hoping a major wildfire doesn’t strike where I live and force me to choose between the lesser of two evils–stay and risk dying in my home or evacuate and risk making myself sicker and getting injured.

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