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BOOK

I Believe You - Cover
“With millions who have long Covid potentially worsening, her book is an urgent warning for our times.”

 

Ronald W. Davis, PhD
Professor of Biochemistry and of Genetics Stanford University
Founder and Director, Stanford ME/CFS Collaborative Research Center
Director, Open Medicine Foundation Scientific Advisory Board

Learn more about Galen and James through her informative and inspiring  videos on TikTok

In her Blog, Galen shares hard-earned tips for navigating the extreme disability of severe ME.

Popular posts are:

  • For Family  and Friends - includes links to peer reviewed research and medical evidence of ME/CFS to help others understand

  • The Gurney Guide - how to find and use non-urgent gurney transportation for bed-bound sufferers.

  • Toileting in the Bed - tips for the hardest and most humiliating challenge to face, something James and Galen should have done sooner.

Learn all about James, his music, his art, and his poetry in Meet James, here.

I Believe You shares an intimate and vulnerable story of daily life with symptoms and circumstances that are difficult to believe. From blacking out windows to toileting in the bed, readers will be able to understand, viscerally, the extremes required to live with the advanced stage of myalgic encephalomyelitis (ME/CFS).

 

In her memoir, Galen shares how James, a talented musician and music producer, suffered ten years of illness and alarming decline without a diagnosis. His own online research finally led to a specialist at Mt. Sinai Hospital in NYC, who diagnosed James with ME/CFS.

 

But it was too late. Ignorant doctors had continually urged James to exert himself rather than rest, causing his ME to become severe, leaving him catastrophically disabled and bedbound. To care for him around the clock, Galen brought him to live with her. 

 

For thousands like James, extreme severity could have been avoided with guidance to rest. Instead, patients are told to exercise more, and use therapy to “think differently” about their symptoms. 

Janet Dafoe Endorsement

“I have come to know Galen as an amazing mother,caregiver and advocate. Patients, families, caregivers and medical professionals will benefit from her lived experience and effectiveness.

 

"People need to know that their friends and acquaintances with ME are not mentally ill or malingering, and to support them in resting rather than trying to get them to "try harder" and go beyond their energy limits and crashing.

 

"Her book is a highly effective clarion call to anyone with ME or long Covid to just rest, and to their loved ones to support them.
I believe it’s what the world urgently needs right now.”
 
Janet L. Dafoe, PhD
Licensed Psychologist

FORTHCOMING

Book

Galen Warden Writes

about Severe ME/CFS

I Believe You is a love letter to families like hers, throughout the world, dealing with ME/CFS/Long Covid and other hidden chronic illnesses in the face of skeptics, gaslighting, and a profound lack of support. 

When her 32-year-old son James became severely ill and bedridden, Galen called on her deep caregiving experience. Three of her six children had survived life-threatening situations, she had cared for her father in hospice and her stepmother with advanced Alzheimer’s. Nothing, however, could have prepared her for severe Myalgic Encephalomyelitis, a chronic illness so severe that it robbed James of all daily activity, but that doctors didn’t recognize.

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Highlights

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Video

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In this short video of James, watch him spend just one minute attempting to shave himself in bed before experiencing Post Exertional Malaise (PEM), also known as a Crash, a signature symptom of ME/CFS as well as Long Covid.

 

JAMES CRASHES

The blog post Crash Prevention gives further explanation for this experience.

Art by James

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ART BY JAMES

CLICK ON ARTWORK

TO EXPAND GALLERY

Scroll to view art by James Strazza, 100% bed bound with Severe ME/CFS. You can purchase canvas prints, or request a custom portrait, like this first image, here

 

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POETRY BY JAMES

CLICK TO READ ENTIRE POEM

James Strazza wrote his very first poem when he was 32, in July of 2020, using talk-to-text on his phone. By October he had written more than a hundred poems and we published his first volume of poetry with illustrations: Lyrical.

Read the moving quotes from his Instagram fans here, and watch them read his poetry. Find  Amazon reviews here.  

BookLife by Publisher's Weekly had only praise:

“Sometimes funny, sometimes gutting, and always beautiful, Strazza’s poems inspire readers to contemplate the importance of words as vehicles for empathy. Readers and music fans will love this poignant collection of masterfully written poems.”  

Lyrical poetry book cover
James's Poems
Galen

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GALEN

Galen Warden portrait by Ruth Hayden
Follow Galen on TikTok for support and practical advice for severe ME/long Covid and caregiving.

Galen Warden is a force of nature – a patient empowerment advocate, caregiver, and marketing expert with more than thirty years of experience. She was a single mother to six children and rose to the top of her field as a marketer and creative director at major companies including Bowker and LexisNexis. Her sheer determination propelled her rise to the top without the benefit of a college degree.

A natural cheerleader, Galen has inspired thousands through her instinctive ability to motivate and encourage. She has harnessed her talents and made it her mission to advocate for the many people who are not believed by the medical establishment. 

Galen has been a caregiver and advocate for more than five years for her son, James, who suffers from severe ME/CFS. She was also an advocate for two of her other adult children in their battles against life-threatening conditions. She was a caregiver to both her father and stepmother in their final days. Initially a part-time caregiver with a high-powered full-time career, she is now a full-time caregiver and advocate for her bedridden son. 

Galen grew up in Montclair, New Jersey, and currently resides in Beaufort, South Carolina with her son James. Now a fourth-generation Beaufortonian, she finds a reprieve in daily walks by the Battery Creek tidal river near her home, surrounded by the natural beauty of the Lowcountry.

Feedback

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FEEDBACK ON SAMPLE CHAPTERS

“This is such a great chapter! It’s going to be useful to so many people. Thank you. My heart goes out to you from our house to your house. 

My heart is just overwhelmed sometimes by the depth of the suffering and the neglect of the medical system. It’s just so mind-boggling”


—Janet Dafoe on Crash Prevention
More feedback on Crash Prevention
Thank you so much Galen and James for sharing such an important article and video. I’ve just shared it on our family group chat, hopefully those that seem unable to understand why my son couldn’t have visitors on his 18th Birthday, may now have a bit more understanding. 
“Thank you for putting this into such an accessible form - my son has had me/cfs since age 13 he is now 20 and has been bedbound for 18 months with severe me/cfs - communicating the impacts and how we need to live is really difficult - this makes a huge difference.”
“I admire this chapter that you wrote and I'm glad you published it. Video makes me cry.”
“Thank you, Galen, I need to hear this over and over again.”
“Thank you. Very clearly explained & I hope it helps prevent some from joining this bedbound club. It’s what I needed to hear, and wished my medical team had understood, back before I crashed over that severe/very severe waterfall.”
On Toileting in the Bed
“This is a very thoughtful, caring account of something that is necessary. It is invaluable information.”
“This is so very beautiful. Not only excellent and clearly set out advice but an abundance of loving understanding. So much thought and kindness has gone into this - such a difficult subject handled with delicacy and truth.” 
“This is brilliant not only for people with ME/CFS. As a nurse I was reading this and I became aware that everything that would have been obvious to me (I have worked in elderly care roles) is not always obvious to people with no training. It's simple, concise, and very good points about avoiding embarrassment. Well done to the author.”

“Talking about this issue also raises awareness about how severe one can get. This is such a personal and private challenge when your dignity diminishes, I don't think most of the affected persons wish to talk about it. Thank you for sharing.”

“This is an exceptional document Galen . Thank you and James for sharing it with all of us.
“This is so very beautiful. Not only excellent and clearly set out advice but an abundance of loving understanding. So much thought and kindness has gone into this - such a difficult subject handled with delicacy and truth.
On Severe ME/CFS Communications
Love this:

Bring only your “calm” into the room with you. Don’t let the rest of your chaotic world in. Take a deep breath, open the door just a crack for just a moment before you go in, so they are aware of your entry without knocking (please don’t knock), and after taking that beat, step gently into their world with peace and grace.

It’s not complicated. It’s not even difficult. But until it’s natural for you, take a moment to consciously remind yourself, I’m entering another dimension.

Contact

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CONTACT GALEN

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