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I'm feeling better than I have in years and taking on more work than ever. However, the metaphor of my ME/CFS as a heavy shadow remains apt because now instead of being one me, it's lingering behind me, following me. It won't go away. It's always there. I keep looking back at it to see how big it is. What will it do next?  Photo: Damien Walmsley, Flickr Creative Commons Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to receive quarterly updates from her, sign up by emailing darla.nagel@gmail.com.
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Breath & Shadow published—and paid for—my submission of an excerpt from Lightening the Shadow! Read it here: https://www.abilitymaine.org/BS2018Summer/%22Instant-Relief%22 I thank the staff. I also got an email from Kaleidoscope expressing interest in a third excerpt, but a new editor-in-chief is about to come on board. He or she will need to review my excerpt and make the final decision. As for the full book, it's nearly ready for production and has benefited from the work of cover designer Michael Brady Design and proofreader Sharyn Mathews. Launch date: September 6, 2018. Thanks for following my book's progress! Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to receive quarterly updates from her, sign up by emailing darla.nagel@gmail.com.
Myalgic encephalomyelitis patients from seven countries sent recordings of themselves singing the chorus of "Blowin' in the Wind" so that another patient could produce a parody of the song. Hear our (yes, I'm one of the singers) protest against flawed theories and research and insufficient funding and understanding of ME. Thanks to all who participated. Here's to the power of music! Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by emailing darla.nagel@gmail.com.
One ME activist has turned to libraries to spread ME awareness. Cindy Downey has donated copies of the award-winning documentary Unrest, and in this article I wrote for #MEAction, she shares her advice for donating. Thanks, Cindy, for inspiring me to donate a copy of Unrest locally!
Patients with myalgic encephalomyelitis are more than tired (or worse, sleepy). The unfortunate name chronic fatigue syndrome has misled doctors, researchers, and the public for too long. I never use the word tired to describe what I'm feeling. I say exhausted or if I'm feeling poetic, like I'm unplugged or like I slammed into a brick wall. Dr. Zaher Nahle, who unfortunately has left his position at Solve ME/CFS Initiative, understood this:  Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by emailing darla.nagel@gmail.com.
Today I did something mature. I wrote down
I should've done this years ago. Especially for people with chronic illnesses, our health can change quickly and threaten our lives any day. Even for healthy people, one person's mistake on the road is all it takes to us unresponsive. You don't want your loved ones wracked with guilt over hasty decisions made on your behalf or delaying treatment as they debate what you would've wanted. If you're a Michigander, you can use the same form I used, which I found here. Others can check with their own state bar association or get started with Five Wishes, a format for creating a living will, which is a major part of an advance directive.  Photo: Mark Warner, Flickr Creative Commons Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by emailing darla.nagel@gmail.com.
“Be there for others, but never leave yourself behind. When you own your imperfections and you embrace your life, you become a better person.” —Dodinsky, In the Garden of Thoughts I interpret “own your imperfections” as “Congratulate yourself every day you, with even a smidgen of dignity, get through an illness-related experience that you’d thought you wouldn’t be able to handle.” Feel free to share a quote that has helped you in the comments! Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by emailing darla.nagel@gmail.com.
2017 has been a year of progress for ME/CFS patients. We’ve done more to inform government officials and citizens about the severity and reality of ME. Research funding is still insufficient and a cure still elusive, but I’m encouraged by the following events this year:
Merry Christmas, and may next year bring better health to everyone with a chronic illness or invisible disability!  Photo: Kent Landerholm, Flickr Creative Commons Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
Keep your friends close. Randolph Bourne, a writer from a century ago with a disability, advised cultivating interests and not allowing yourself to feel inferior. He also wrote about the importance of friendship: “Without friends I feel as if even my music and books and interests would turn stale on my hands” (quoted in The Best American Essays of the Century, p. 70). Go hug a friend today, and feel better!  Photo: Rod Waddington, Flickr Creative Commons, https://www.flickr.com/photos/rod_waddington/35716550336/ Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
Randolph Bourne, who was born with a physical disability, wrote about 100 years ago, “Do not take the world too seriously, nor let too many social conventions oppress you. Keep sweet your sense of humor, and above all do not let any morbid feeling of inferiority creep into your soul....In a word, keep looking outward; look out eagerly for those things that interest you, for new interests and opportunities to express yourself” (quoted in The Best American Essays of the Century, p. 70). Am I off base, or is this good advice for people with disabilities even today? Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by e-mailing darla.nagel@gmail.com.
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Darla Nagel
Darla copyedits books and tutors writing while living with an invisible chronic illness. Categories
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