|
In July I attended a virtual summit for people with chronic illnesses hosted by Lisa Sniderman. The speakers included practitioners, counselors, and patients, and for me two interviewees stood out: Danielle Lowe (music therapist for people with mental health conditions) and Amy Oestreicher (author, health advocate, and survivor of an exploded stomach). Lowe said, “So I guess what I would offer up is to, even though it can be hard sometimes, to advocate for ourselves, to make an effort to advocate for yourself when it’s difficult for what you need, whether it’s an accommodation or extra time or a different appointment or extra appointment, less appointments, to really check in with yourself for what you’re needing and ask for it. And if the other person isn’t willing to kind of accept that then you shouldn’t, you should find someone that will, and never be afraid [of] asking for what you need or for more help.” Oestreicher said, “Hope isn’t like this inspirational beam of light that’s just like, ‘Okay, I am going to have hope.’ Hope is like a job that we have to actively create….Hope is the fuel that gets us down a road that’s uncertain.” If you want additional lessons learned from chronic illness, email me, and I’ll send them your way!  Hope gets us down uncertain roads. Photo: Jamie McCaffrey, Flickr Creative Commons 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.
0 Comments
“At nearly 20 percent of the U.S. population, people with disabilities represent one of the largest minority groups, but it has often been an overlooked one. That may be changing with a new wave of activism by those who want to change the way disability is viewed in the U.S.” —National Center on Disability and Journalism’s website We’re not seeing as much representation of people with visible and invisible disabilities in the media as we should given the recent surge in diversity/inclusiveness campaigns. Have you seen efforts to ensure vulnerable patients have easy access to personal protective equipment? Have you seen people using mobility aids or service animals in those ads that harp on how “we’re all in this together”? Now is the time to assert that our lives and our needs matter, too, and ought to be in the spotlight rather than shoved off to one side. What can people without disabilities do? Start by watching your language. Unless we ask to be called crippled, handicapped, impaired, or suffering, don’t call us that. We are people with disabilities, not the lifeless-sounding “the disabled.” Ask us whether and how we want our conditions mentioned in your writing and speeches. Then listen to us! You can learn more about acceptable versus unacceptable terms to use at the website mentioned above. The Americans with Disabilities Act was passed on July 26, 1990. #NCDJ30for30 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.
 I'm singing in my "recording studio." I had the time and physical energy to write a book while staying home, but my heart led me toward music instead of writing. The people closest to me seemed to need comfort, the focus of my singing, rather than spurring to action, the focus of my nonfiction writing. With help and inspiration from Audacity, YouTube, and Flickr, I’ve posted a few personal music videos on Facebook. You can see my video of Twila Paris’s “How Beautiful” here. I will write again, but for now, I’m expressing my voice musically. Don’t be afraid to make your voice heard in a new way if that will reach your audience! 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.
Take Daily as Needed by Kathryn Trueblood Never have I read a book that truly captures a feeling I've often had: guilt for the effects of one's chronic illness on one's family. Trueblood's 2019 novel is written as a chronological set of short stories centering on one somewhat dysfunctional family. It's an atypical novel focused on what may seem to be atypical experiences but actually are the norm for countless families. Because there is so little well-written fiction concerning a family with various emotional and physical disabilities and illnesses, this book helps fill that void and is therefore valuable. There are books you read to escape from the harshness of life, and there are books you read to find empathy in dealing with the harshness of life. Those who seek the latter will find it in Take Daily as Needed. The illnesses focused on are ADHD and Crohn’s. You can learn more about the book on Goodreads. The Clear Skin Diet by Nina and Randa Nelson If you’re searching for a radical way to eliminate acne and for research that counters the commercial food industry’s claims that we need meat, dairy, and fat in our diets to survive, you’ll find it in The Clear Skin Diet (2018). Dozens of young people following the plan, which eliminates all animal products, oils, and high-fat plant products and promotes fresh, unprocessed foods (I know, that might make you quit reading right there, but humor the beautiful authors for several more chapters), totally cleared their severe acne. The photos, testimonials, and snippets from nutritionists and functional medicine doctors appear honest and dramatic. The book is written in an approachable style and provides counterarguments for common objections and over a dozen recipes. I was inspired to try the diet, following it 80% for four weeks as my specialist recommended. You need to consult with your own physician before making such a radical change. That is not emphasized enough in this book. I made extra trips to the bathroom the first three days of the diet (eating way more fiber!!). (If it helps my acne, I’ll let you know in a separate post. I’m only a week in.) Those with cystic acne, food allergies, or depression should consider this book. You can view the authors’ website at ClearSkinDiet.com.  Photo credit: Stefano Corso, Flickr Creative Commons 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.
“If plan A doesn’t work, the alphabet has 25 more letters – 204 if you’re in Japan.” —Claire Cook Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate health care professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
As a patient with a chronic illness and a biomedical copyeditor, I often read books including medical conditions or research at my leisure (off the clock). Here are two book reviews (cross-posted to Barnes & Noble and Goodreads). The Day I Forgot - But Will Always Remember by Dr. Brenda Brown Dr. Brown shows the frightful nature of sudden cardiac arrest and the invisible yet disabling aftereffects that can occur. Her words as well as photos will resonate with many readers. She has written this account as part of her recovery, yet this book isn’t just about her: Appendices contain other survivors’ stories and resources that every person should know about. After all, sudden cardiac arrest can happen to anyone. Disclosure: I copyedited a substantial portion of this book. An Elegant Defense: The Extraordinary New Science of the Immune System by Matt Richtel Richtel’s book manages quite a feat: binding storytelling with science. By naming, describing, and assigning images (e.g., first responders, scouts, police officers) to different cell types, he makes the immune system science readable and applicable not only to the four patients profiled but also to any patient or physician. Have you wondered what advantages immunotherapy holds over chemo? Have you wondered why autoimmune disorders are so tough to treat and they continue to become more common? Is it really so bad to skip handwashing and antibiotics now and then? Top scientists and medical doctors offer their insight on these questions and more. Readers will be fascinated at how many mechanisms our immune system has to control. As a biomedical copyeditor who still has many concepts to learn, this book has been immensely valuable for not reading like a textbook. The one personal drawback of this book is that as an agnostic, Richtel can’t see that the overwhelming complexity of human immunity had to have been divinely created, not evolved, and that human “diversity” alone won’t be enough to solve the medical problems humanity has gotten itself into.  Pierre Metivier, Flickr Creative Commons Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to encourage patients and educate health care professionals. To receive quarterly updates from her, email darla.nagel {a} gmail.com.
Pacing: strategizing time and energy to avoid overexertion. Tips for doing 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 receive quarterly updates from her, sign up by emailing darla.nagel@gmail.com.
I self-published Lightening the Shadow in print and e-book versions through IngramSpark with worldwide distribution in September 2018. This is what it cost and the royalties I'd made as of year-end 2018. I hope this helps others who are thinking about self-publishing. Ask me any questions in the comments.  Publishing costs for Lightening the Shadow Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to educate others about our experiences. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
“Don’t let life happen to you; go happen to life!” —Crystal Paine, owner of MoneySavingMom.com Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to educate others about our experiences. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
Both terms refer to the limited energy of patients with myalgic encephalomyelitis and other greatly fatiguing illnesses. “Energy envelope,” borrowed from the practice of limiting spending by using only the amount of cash set aside in an envelope for a period, refers to how much energy a patient can exert in a period without worsened symptoms. Spoon theory is best explained by its first publisher. If a spoonie (patient) runs out of spoons (energy), worsened symptoms result. I hope this makes caregivers and health science students more understanding of myalgic encephalomyelitis patients’ limitations and invisible struggles. Ask me any questions in the comments. #mecfs #pwme #invisibleillness Darla Nagel is an editor and writing tutor who has an invisible chronic illness. If you'd like to receive quarterly updates from her, email darla.nagel {a} gmail.com.
|
Darla Nagel
Darla copyedits biomedical research while living with an invisible chronic illness. Categories
All
Archives
May 2020
|
RSS Feed