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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.
I've decided to self-publish my memoir, Lightening the Shadow. The traditional publishing route has proved too slow for my message that needs to go out to young patients and medical school students now. My publisher will be IngramSpark because of its connection with the world's largest book distributor. I want my book to be easy to find. I'm already learning lessons (such as the high cost of an ID number for my book) that I'll take with me when I publish my next book and edit self-publishing authors' work. For any literary agents reading this, I appreciate your time and consideration of my book. Know that I learned from the submission process, and as a fellow publishing professional, I want nothing but the best for the future of the industry. Thanks, everyone, for following my publishing journey. I'll let you know if I'm able to make advance copies of the book available. If you'd like to provide a book review or help with the launch in any way, please email me. I'm assembling my launch/promo team! 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.
Being cared for can cause guilt, but it shouldn’t. Guilt darkens your mood and drains your energy, widening rather than bridging the gap between your abilities and your caregiver’s. There’s no need to feel guilt if you did nothing to cause your disability. You did nothing wrong. You’re doing the best you can with what life dealt you. Your caregiver loves you, and love is the greatest motivator and burden lifter there is. If your roles were reversed, you wouldn’t grudgingly care for your caregiver, so don’t talk yourself down and make yourself feel like a burden. You’re worth being cared for. Yes, you are! This is the expanded version of what I told my friend with a progressive neurological disorder when she said something negative about having to live with her parents/caregivers. Let go of the guilt and work on something else that you can change. 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.
The millions of myalgic encephalomyelitis patients missing out on life need millions more in research funding. Tell that to the director of the National Institutes of Health (pictured below) here. Much as I like the song "A Million Dreams," it's "gonna take" more than dreams to improve patients' lives and unravel the cause of this disease. Learn more about myalgic encephalomyelitis here.  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.
"When you accept that you are chronically ill, the energy you used to exert fighting with yourself can be spent fighting for yourself." —Trisha, patient, in the book What Nurses Know...Chronic Fatigue Syndrome by Lorraine Steefel  Photo: 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.
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.
If you have a neurological or psychiatric disorder, why not help researchers see what goes wrong at the source of the disease? Arrange to donate your brain after your death as a way to advance medical research. This year, I signed up to donate my own noggin to the Harvard Brain Tissue Resource Center, which accepts brain donations from healthy controls and from people with conditions such as:
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.
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Darla Nagel
Darla copyedits books and tutors writing while living with an invisible chronic illness. Categories
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