I Believe You Update
Your support keeps me going on the important path to myalgic encephalomyelitis (ME) awareness and education. My mission is to help others avoid very severe ME before their lives are ruined.
Book
I Believe You is still a sapling, awaiting an agent and a publisher. But with your love as the sun, and your support as the rain, it is guaranteed to bear fruit soon.
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My most exciting news is that a prominent ME specialist in the UK has agreed to write the Forward for my book: Dr William R.C. Weir FRCP (London) and FRCP (Edinburgh) and a consultant of infectious diseases and now a consultant physician (Fellow of the Royal College of Physicians).
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Dr. Weir has deep and meaningful experience with severe and very severe patients throughout the UK. He understands exactly was James is experiencing, and the extreme challenges families face trying to get recognition for ME and appropriate care.
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His participation will enable agents and publishers considering my book to feel more confident and to trust the complicated medical side of our story.
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James
Watch a short video contrasting James in 2012—singing a prescient song he wrote— with his condition today, created by Trent Eliason for Severe ME Awareness Day.
James is currently back in the abyss of very severe ME. We don't know why, but the treatments that had helped him be able to sing, use a computer, watch TV and read and write in 2023 and 2024 are no longer working.
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Currently, James spends all day and night isolated from the world in his dark room, usually wearing headphones to keep out painful noise like birds outside of his blacked out windows. He's back in the abyss of nearly complete helplessness.
As of May, 2025, he cannot use his phone, so he's cut off from all communications with the outside world. I know his friends on Instagram and Facebook are worried about him. He is ok, just living in his head, using his imagination while trying not to crash from becoming too emotional or stressed about what he's thinking.
Because all he can do right now is think, even that must be managed with pacing and caution.
Documentary
James and Galen will appear in the upcoming documentary, What Doesn't Kill You. Watch a teaser for the film.
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It was an exciting challenge to have Trent Eliason fly in for 48 hours to film us. He asked me to keep everything normal, not to act like things have to be perfect for the film. So I just did the normal pick-up and left my house the crazy way it is - with James's apartment having been emptied into my garage and my house in 2019.
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You'll see me talking to Trent over dinner in my apron - a wonderful purchase from an ME fundraiser. you'll see my home, where I live, and how James lives. His room is cluttered with the necessities of his care, his bed with all the things he needs, easily reachable. Blankets and pillows are piled on the electric wheelchair we wish he could use.
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Trent was wonderful to work with. He filmed James both in room light, with his mask on, and interviewed him with a special "ghost hunter" (LOL) camera that can film in the dark. Those are the black and white portions you'll see in the teaser. Trent wanted to be able to show James's eyes while he was answering brief interview questions.
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He captured James whispering by pinning a little mic on him, but I wasn't in the room so I don't know what they discussed.
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It took several days to recover from the interactions and stimulation, but James and I both felt it was very much worth it. I will let you know when What Doesn't Kill You is released and available to watch.
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In the meantime, the producers need funds to do the expensive work of traveling and capturing so many stories, including a section where they stop people on a city street and find out what they know about ME. (I think we all know how that will go!)
Personal
I'm traveling to New Jersey soon to meet my newest granddaughter. Preparing James for my absence, lining up 24/7 care for him for a week, are a major undetaking. Here's a photo from 2023 of Erin, who will be in charge of his care while I'm away.
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In addition to getting ready to travel - packing, crocheting a hat for the new baby - I am working on a notebook to leave with the caregivers. I call it Starfish Chronicles, and it will have micro-management of everything for James!
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James is like the starfish in the short story where the little girl tossing a beached starfish back into the ocean is told she can't make a difference because there are hundreds of them. She responds, "I made a difference to that one."
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James is my starfish - helpless but worthy of our efforts to keep him safe. Starfish Chronicles will enable caregivers to support him with the care he is used to, including how to cook like mom!
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It will be an expensive trip because of his care. But it's very clear that if I don't do the things I need to do for myself, like meet my new granddaughter, James won't have the care from me that he needs to feel safe and loved.
