Darla Nagel
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Lightening the Shadow

Why the Government's Plan Isn't Enough for ME

10/29/2019

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Maybe you liked the 80s, but I'm sure you don't want federal research funding for a disease that affects more than 1 million Americans to be like it was in the 80s. Check out this video from #MEAction: https://youtu.be/B5mw45nE6Qg #NotEnoughforME #pwme 

Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
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Ten Reflections on Ten Years with ME (Part 2)

5/12/2019

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To mark #MillionsMissing and my tenth illness anniversary, here are the second five of ten things I would have done if I had not developed myalgic encephalomyelitis. If I had remained healthy, I would have
  • kept the friends I lost when they didn’t know how to act around me
  • saved thousands of dollars by not having to take dozens of supplements or lose a scholarship
  • saved my parents a dozen tears, gray hairs, and sleepless nights
  • adopted a dog
  • lived life without looking over my shoulder for a crash or relapse
What are you missing because of ME? #canyouseeMEnow
Lightening the Shadow
Learn more about life with ME in the book Lightening the Shadow.

Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to enlighten health care professionals on patients' experiences. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
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Ten Reflections on Ten Years of Life with ME

5/2/2019

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Ten days before #MillionsMissing and seven days before my tenth illness anniversary, I’m reflecting on ten things that I would have done if I had remained healthy. Here are the first five. If I had remained healthy, I would have
  • traveled to both Florida and New Mexico to visit aunts and uncles
  • published a book of fiction instead of memoir
  • moved out of my parents’ house
  • gotten a graduate certificate or degree
  • sung in public more than just twice
​#canyouseeMEnow

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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#MillionsMissing Rally 2018

5/12/2018

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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.
#MEAction poster of Collins

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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ME Protest Song Now Live: Thanks, Musicians!

4/24/2018

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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.
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Donate to Libraries to Educate about ME

4/12/2018

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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!
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ME Activism Planned for 2018

1/6/2018

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  • Write two articles for #MEAction
  • Finish preproduction of my memoir, Lightening the Shadow
  • Tell Congress to increase funding for myalgic encephalomyelitis research
Tell me what you want to do this year in the comments. Together, we can spark change. Here’s to progress in 2018!
Spark Change in 2018
Photo: Blondinrikard Fröberg, 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.
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Progress for Patients in 2017: A Reflection

12/23/2017

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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:
  • The release of the award-winning documentary Unrest, featuring Jen Brea of #MEAction
  • The updated ME treatment information (i.e., not graded exercise therapy or cognitive behavioral therapy) on the CDC’s site
  • The accurate media coverage in the New York Times, Ms., Huffington Post, and other publications.
 
Merry Christmas, and may next year bring better health to everyone with a chronic illness or invisible disability!
Christmas
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.
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See What ME Is like with Unrest (Film)

9/27/2017

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The documentary Unrest, which won an award at the Sundance Film Festival, is now screening across the world. Much has been written about the ME illness experience, but until people see it (and come close to feeling it with the virtual reality version), they're unlikely to understand exactly how devastating this disease is. Watch the trailer here: https://www.unrest.film/trailer. See where Unrest is showing here: http://see.unrest.film/showtimes/
Jen Brea #TimeForUnrest
Jen Brea, subject and director of Unrest and cofounder of #MEAction. #TimeForUnrest
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's BedFest Submission: Memoir Excerpt

5/5/2017

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For #BedFest, a virtual concert by ME patients, and to commemorate my eighth “illness anniversary,” I read from my memoir, Lightening the Shadow. Here's the opening:

I don’t feel tired; I feel like I body slammed a brick wall, not as much in the pain as in the “Ugh, I can’t move or think now” sensation. I feel like I’m five decades older than I am. I feel like I’m unplugged in the dark.
​  
I didn’t think it in those words, but that’s what I was feeling as I combed my wet hair in the YMCA locker room after one of my hour-long swims. What I actually thought was Maybe this is more than a cold. I’m whipped, and my legs are sore, even though I didn’t swim as hard today. Swimming rarely made me sore, even after the two-hour-long practices I’d done on the high school swim team. Instead, swimming usually rejuvenated me mentally and physically. I consider it the best form of exercise, and it’s my favorite form because of water’s calming and cooling effect.



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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    Author:
    ​Darla Nagel

    Darla copyedits biomedical research and writes natural health magazine articles while living with an invisible chronic illness. She has a big appetite for chocolate despite being a health nut.

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