Galen Warden Writes
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.
about Severe ME/CFS
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BOOK
“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
Galen shares hard-earned tips for navigating the extreme disability of severe ME through her blog.
Popular posts are:
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For Family and Friends - includes links to peer reviewed research and medical evidence of ME/CFS to help others understand
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The Gurney Guide - how to find and use non-urgent gurney transportation for bed-bound sufferers.
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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 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 this illness.
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 Myalgic Encephalomyelitis (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.
After losing the ability to read, James used talk-to-text to write more than a hundred poems in just a few months, fighting for a creative outlet after losing music.
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
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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.
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Hand-painted* iPad portrait of the singer Elvis Presley. *Not a filter
Example of a custom portrait painted on iPad for canvas print.
Original iPad painting for canvas print.
Hand-painted* iPad portrait of the singer Elvis Presley. *Not a filter
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.”
Knowing that their experience of medical dismissal repeats every single day all over the world, Galen chose to embrace the call—and leverage her skills—to stop this cycle by shouting the story of her son’s experience from the rooftops.
Galen Warden enjoyed a successful thirty-year career as a creative director and marketer, singlehandedly raising and supporting her six children.
When two of her adult children suffered life-threatening diseases, and another a near-fatal car accident, Galen leaned into care and advocacy for them. She also cared for her father in hospice, and then moved in with his widow to care for her until she passed from advanced Alzheimer’s.
None of these experiences prepared her for the dismissal by doctors of her son’s extreme symptoms over the ten years that he became more and more ill and disabled without a diagnosis or even a serious investigation of his symptoms.
Now settled in Beaufort, South Carolina, Galen feels perfectly at home as a fourth-generation Beaufortonian. She is writing her first book while caring for her 100% bed-bound youngest son, James Strazza. Her forthcoming memoir tells the story of personal growth for both of them as they each navigate losing the lives they loved, due to his extreme disability and severe chronic illness.
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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.”