Galen Warden Writes
Galen writes about James Strazza, her son who is bedbound with Severe ME/CFS: the story of his illness and the ignorance, denial and gaslighting that made his illness severe.
Learn more about Galen's art, poetry, jewelry and freelance at aboutgalen.com
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BOOK
This important forthcoming book tells the story of Galen and her son, James Strazza, chronicling his ten-year decline from the Epstein Barr virus to being 100% bed bound due to Myalgic Encephalomyelitis (ME/CFS). Long Covid is a recent version of ME. It can also develop from Dengue Fever and myriad other illnesses.
For nine years, James had Mild ME/CFS. Galen, her family, and all of the doctors who saw James had no awareness of the disease and its signature symptoms of overwhelming, unrelenting fatigue and post-exertional malaise (PEM). PEM is sudden overwhelming exhaustion, incapacitating you so that you cannot function, perhaps even too weak and exhausted to chew food. Galen captured a crash while James was trying to shave himself, to help you better understand its severity. Learn more from the post on Crash Prevention.
"Without this knowledge we were all puzzled about his extreme fatigue. He had many blood tests, but at the end of the day, ignorance led to massively harmful advice from everyone and eventually made him bed bound, trapped in a dark silent room alone."
In Galen's book she relays the story of his steady decline to utter helplessness, and provides critical information that might prevent your loved one with mild ME or Long Covid from becoming as severely ill as James.
In her blog, Galen shares chapters of the book in progress, snapshots of their lives dealing with extreme disability and their journey to find treatments and coping mechanisms which help them hold on in spite of no cure. Their tragedy begins with medical ignorance. Use the Contact form to share your own ME story.
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Example of a custom portrait painted on iPad for canvas print.
Hand-painted* iPad portrait of the singer Sade. *Not a filter
Original iPad painting for canvas print.
Example of a custom portrait painted on iPad for canvas print.
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 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.”
Galen Warden’s earliest memories are of flying through clouds in her father’s private plane when she was three. After her parents divorced, she spent a memorable summer vacation with her mother on Koinonia Farm in Americus Georgia, where she witnessed the first cinderblock homes of the future Habitat for Humanity being built.
A dual childhood of plenty and lack gifted Warden with a unique perspective of the world, people watching and window shopping, with nothing to prove. An artist and poet since childhood, the language of poetry has enabled Warden to crystalize her thoughts around the most difficult and transcendent of life’s moments.
She singlehandedly raised and supported six children, building a successful career from the ashes of bankruptcy and eviction without a college degree. Losing everything removed all fear and gave her the strength to take big risks and the empathy to care for strangers.
Now settled in South Carolina, she makes time for art and writing while caring for her bed-bound youngest son, James.
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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.”