Fear, Danger, and Illness: What We Can Learn From One Astronaut’s Experience

“What’s the scariest thing you’ve ever done? Or another way to say is what’s the most dangerous thing you’ve ever done and why did you do it?”

That’s how Canadian astronaut Chris Hadfield opens his TED Talk, during which he shares his harrowing tale of going temporarily blind while working outside the International Space Station. I don’t know about you, but I’d pee my pants. Space is terrifyingly awesome and the simple thought of being in such a situation makes my head spin. But, Hadfield made it through the entire extravehicular activity. How? He argues it’s because astronauts are drilled and trained to recognize the difference between perceived fear and danger.

I’d argue that illness has a similar effect. Most people can think about what it must be like to float weightlessly in space just as well as they can think about what it might be like to fall ill with something that you will never be cured of. It’s foreign, alien, and unknown. But, unlike finding yourself blind in space, illness can strike any family and any group of friends. It’s the big gorilla in every room that no one wants to ponder. Which is why Hadfield’s experience can help those facing illness tackle the fear they see in the mirror, and the danger lurking in their own DNA.

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I don’t think that any sick person can say they are the same person before and after diagnosis. I’ve always battled anxiety, but my journey to finding out my brain is malformed changed me in so many ways, some I’ve yet to discover. Knowing that you will forever battle your body can be a hopeless kind of situation; I remember the moment I realized that there would be many nights where I could not feed myself, could not walk under my own power, and would have to make sacrifices that others can never understand. I spent a good, long while being afraid of every headache and doctor’s visit, of being alone, going without medication…of simply being afraid of everything. But, that’s not living. That’s wading and trudging, not living. This understanding is the line drawn between fear and danger

Continue reading “Fear, Danger, and Illness: What We Can Learn From One Astronaut’s Experience”

My Chronic Illness Pet Peeves

Working with teens and kids means I have a lot of conversations about language and the power of words. But, more often than not, it’s the adults I’ve encountered that end up putting their foot in their mouths. Part of this blunder can be traced back to the stigma surrounding illness and our silence as sufferers. How will anyone know what you go through every day unless you share a bit about your experience? I learned long ago that trying to keep your illness a secret is so much more destructive than the perceived danger in sharing. I narrowed my list down to five mistakes people make and how to turn those phrases into caring statements or questions. Don’t miss the links at the bottom of the post to other great resources for those struggling to talk about chronic illness!

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  1. “Get well soon!” – Unfortunately, pills and even surgery won’t push my brain back where it’s supposed to be. This is said with good intention, but it only conveys how little people understand about chronic illnesses. Chronic is defined by Dictionary.com as “persisting for a long time or constantly recurring.” No amount of rest or injections will make me better. Instead, try something like “I hope the pain lets up,” or “I hope your medication is helpful.” Recognize that there’s no cure, only varying degrees of the illness.
  2. “My Aunt drank Kale smoothies in a magic well and cured her polio!” – That doesn’t happen. Or, if it does, I seriously need to hunt for a magic well. Every illness is as unique as each person living with it, so don’t assume that this person has obviously never thought of bathing in vegetables. Most of us would trade anything for a cure that simple. Treatments are chosen for certain reasons, and most illnesses require several different combinations of treatments. If you’re wanting to offer advice to a sick friend, you might want to familiarize yourself with their illness, and ask if anything specific helps. If I tell you I’ve had 12 nerve block injections for my migraines, don’t ask me if I’ve tried Tylenol.
  3. “Why don’t you sit in the back for five minutes?” – My brain is falling down my spinal column, but by joe I think sitting in the dark for five minutes is absolutely what I need! One of my previous bosses used to ask me all the time if I needed to lay down in our break room for a couple of minutes, surrounded by her perfume, to get rid of my migraine. No. Things like caffeine, or cold and hot compresses can sometimes help. Ask if there’s anything you can get your ill friend, rather than diagnosing their problem for them.
  4. Any blanket comment about their lifestyle is absolutely wrong. My neurologist recommends Gatorade for bad flare days; it helps give your body a boost and helps offset some negative medication side effects. My old boss used to say things like, “Those drinks are bad for you,” or “Do you know how much sugar is in those?” Sick people don’t want to be sick. It is never your place to tell that person how to live. If you’re concerned about why they are doing something, ask before you put on your invisible physician coat.
  5. Any assumption about ability is discrimination. I’ve faced people who have openly told me they think I’m faking. I’ve missed out on meetings and opportunities, because workplaces have told me “I assumed you wouldn’t be up to it,” or “I figured you’d be wiped out.”

The main message: ASK BEFORE YOU LEAP. Don’t put your foot in your mouth.

This is one of the main reasons I’ve become much more open about my illness. If people feel I am comfortable talking about my malformation, then they are much more likely to ask a question rather than force an ignorant statement on me.

Other resources for talking to chronically ill friends, family members, or coworkers are out there. I’d recommend:

Part 2: What the Chronically Ill DON’T Want to Hear

20 THINGS TO NEVER SAY TO A PERSON IN CHRONIC PAIN

15 THINGS NOT TO SAY TO SOMEONE WITH A CHRONIC ILLNESS OR INVISIBLE ILLNESS


What’s your biggest chronic pet peeve? What have you done to combat it?

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Sew Your Own Sock Rice Warmer

Migraines are my worst enemy; sufferers who live with neurological conditions usually struggle to find relief without turning to medications with incredible side effects. That’s why I love rice warmers, which are really to make anyway, but wait ’til you see this DIY…with socks!

A coworker and I were talking about our migraines; she has had them for a long time, and I’m always picking her brain about her path of self management. She uses herbs, teas, and super simple things like sock rice warmers to live a richer life. “My husband always has that one sock in a pair that has holes,” she explained, which I completely understand. Husband is hard on socks, and the creative in me hates throwing things out if I can repurpose them somehow. Read on to see how a sock can bring you hours of relief!

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I’m not sure if I’ve ever come across any project that is as universal as rice warmers. No matter the season, they are perfect gifts for family and friends who have sore muscles, headaches, back pain, and the list goes on. I’ve made them in the past with colorful and comfortable fabrics, but socks are perfect for this. They are rather durable, soft, and the best part is that it limits the sewing you have to do!

I used a striped knee high sock to make my first rice warmer. To start, I cut off the toe end of the sock, turned it inside out, and stitched that end closed with embroidery thread. After turning it right side out, I slowly started adding rice until it reached the first white dotted line. I pinned closed the first pink segment of the sock and threaded it closed. That’s it. I repeated the pouring, pinning, and threading until I reached the last black segment at the top of the sock. I chose to leave the top unfilled and used a blanket stitch to close the end.

When I said it’s easy, I meant it’s really stinkin’ easy! You could personalize your rice warmer with dried herbs or oils like lavender. What sets this project apart from other rice warmers is how light it is, while maintaining structure. I have other warmers that go unused because they are just too heavy. But, the socks don’t need reinforced, they don’t burn because the weave of the material is more substantial, and they are machine washable! My coworker said she makes them in all sizes for her family, and said they are perfect for the freezer. I tossed mine in the freezer overnight and it helped an early morning headache today!


How’s your self-care Sunday, going? Spoonies, what’s your go to technique for finding relief?

Have a relaxing day, dears

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10 Lovely Things

It’s been a while since I’ve written up a “10 Lovely Things” post, so to celebrate that fact that we’ve all made it half way through the week, here’s 10 wonderful things I’ve found on the net that make my heart happy.

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01. If you’re like me, you probably have an overflowing collection of empty pill bottles. I keep mine and store sewing needles, paper clips, beads, and other small nick nacks. But, if you’re looking for ways to reuse your bottles, Elisabeth Kruger has 30 Genius Ways to Reuse Empty Pill Bottles over at DIY & Crafts. The list has ideas like turning those empty bottles into jewelry storage, seed containers, or cat toys (seriously going to try that one). Check it out!

02. What’s better for a spoonie than home decor made from spoons! Andy’s Selections gathered 15 DIY plastic spoon crafts that include making gorgeous flowers, wreaths, and candle holders!

03. We all know that journaling can help us work through the complexity of our illness. But, I’ve never thought of journaling my appointments. Tania Jayne at When Tania Talks broke down her system and wrote a fantastic DIY that walks you through How To Bullet Journal Doctor’s Appointments. I’m going to try this the next time I go in; it might be a good idea to include information from my Pharmacist as well!

04. One of my new favorite blogs, A New Kind of Normal, has tons of Chronic Illness Resources. Thank you, Jamee Lynne, for sharing all of your amazing resources!

05. Speaking of new blogs, everyone should rush over to Uncustomary; Mary writes super helpful posts about loving you, building your self-esteem, and 50 Ways To Practice Self-Care. She also has one of the most positive Facebook groups ever; join Uncustomary Babes!!!

06. Sometimes, having a chronic illness can be a very alienating experience. That’s why I love articles that help others understand (or come as close as they can to understanding.) For Real For Good shared a post back in April, How To Love Someone With a Chronic Illness, that has realistic information for caretakers, spouses, partners, and family. Share it far and wide!

07. I found Catherine at The Blissful Mind on Pinterest and I’m just blown away by her posts! I’d absolutely suggest you listen to a featured podcast, How Creative Spoonies Can Practice Self Care. It’s pure gold! Click over to her site and stay a while!

08. Okay, last blog promotion, I promise! Chronic Babe, aka Jenni the loveliest woman ever, created her blog for younger women living with multiple illnesses. “I am not my chronic stuff. I am a young, creative, passionate, generous, driven woman. I am a Babe. I’m here to share what I know with you, and to create a space for others to share their successes so that you can be a Babe too.” How amazing does she sound!? Run to her blog right now!

09. Humor can be lost in the mess of doctor’s visits, stereotypes, and pain. I follow Chronic Illness Funnies on Pinterest and have found myself laughing out loud at some of the memes they share! Follow if you want to laugh along with me!

10. Cathy over at Crafting Is My Therapy is sharing 31 Disability Hacks for Housework, and people let me tell you…This has changed how I look at cleaning our apartment. Tips like using wax paper on chrome fixtures are genius! According to Cathy, “Wax paper is great for reducing water marks on chrome and stainless steel taps. Water and oil (wax) don’t mix so the water will be repelled by the wax coating on the taps.” See, genius! These are awesome suggestions even for healthy people with busy schedules.


Yea, it’s not technically September yet, but I couldn’t help myself! I’m so excited about all the upcoming posts and goodies that are coming soon! Remember to click the “subscribe” button in the sidebar so you don’t miss a thing!

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What’s the loveliest thing you’ve seen on the web in the past week? Share it in the comments or on social media @faythelibrarian!

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Why Chronic Blogging Matters

For most of my adult life, I have led a compartmented lifestyle. My illness was like a terrible skeleton I had to stuff into a closet and lock away, never to speak of again (or at least not publically). Part of this response, I think, was driven by attitudes of medical professionals. But, I also dug a deep hole for myself by thinking I could manage everything on my own, without changing my lifestyle. I paid the price for my silence, though. My struggle stripped me of my identity, my self-respect, and my voice.

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That’s when I started blogging. Looking back now, it is the most important decision I have made with regards to how I live with my illness. Growing up in the ’90s, we all had Angelfire sites and Livejournal blogs, which is probably why I turned to the net as an avenue for coping. Besides my obsession with TMNT and YA fiction, my Tumblr account slowly started sporting graphics aimed towards the chronic community and before I knew it, I was sending emails all over the world. This powerfully positive experience leads me to believe that more chronic illness experiences need to be shared for three reasons:

  1. Self-Care, People! – The power of writing and sharing can be an enormously restorative practice.
  2. Building Support – Connecting with others and forming your support ring is key to living with your illness, rather than suffering through it.
  3. Fight for Your Rights – Illness needs a voice! Stereotypes keep us from sharing vital information that could lead to increased awareness and public action.

I’m by no means saying that this is easy. Talking openly about my illness has no doubt changed how some people perceive me. The positive and reaffirming conversations I’ve had, though, far outweigh the negatives. And, don’t think that this information isn’t beneficial to healthy people; no matter if you’re a friend, partner, caregiver, or a member of the medical profession, everyone can take something away from this post!


Not only is September Suicide Prevention month, but it is also Arnold Chiari Malformation Awareness Month!  Speak up and join the conversation on social media!


Read on to see how you can start blogging and making a difference!

Continue reading “Why Chronic Blogging Matters”