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In advance of the book, Galen shares hard-earned tips for navigating the extreme disability of severe ME in 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.
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Learn all about James, his music, his art, and his poetry here.
Galen Warden's forthcoming book, Music in His Mind, is the story of a family turned upside down by an illness so severe and extreme that it’s not at first believable.
Young musician and music producer, James Strazza, came down with Myalgic Encephalomyelitis (ME) after a serious episode of mono caused by the Epstein Barr Virus.
First, unable to lift a guitar amp, then a guitar, then unable to play any instrument at all, he slowly became so severely affected that at 32 years old, he could not sit up or leave his bed, even to use the bathroom. Now 35, he still cannot lift more than four ounces of water and he lives isolated in a dark room because light and sound cause searing pain in his brain.
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Follow James from a very eventful childhood, through this tragedy as it unfolds in his twenties, and witness the moments when doctors, unaware of the disease, cause worsening symptoms with harmful advice.
Watch Galen come to grips with believing her son after years of convenient denial.
If she had the information in this book, she could have helped her son early enough to prevent the unrelenting advance of mild ME to very severe. But because of ignorance and inaction, Galen pays the price. Abandoning her comfortable life, she becomes ill herself from the overexertion required by 24-hour care for her bed-bound son, and ultimately loses her successful career.
While James is learning to cope with extreme exhaustion, weakness, and isolation, Galen is compelled to make her own journey into the abyss to become the caregiver he needs, or neither of them will survive.
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As this journey unfolds for the two of them, you will be able to understand the worst of this disease and the extremes required to survive it and to care for someone who wants to live rather than give up.
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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 Amazon reviews here.
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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 Beaufort, South Carolina, Warden 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, Music in His Mind, tells a story of personal growth for both of them as they navigate isolation and 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.
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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.”