Tag Archives: books

Will Work For Coffee: Self-Care At Work #sponsored

Apparently I have an inordinate number of pictures of coffee on my phone. I also have a ton of photos of my dog, but that at least makes more sense than my strange compulsion to photograph my work coffee habit!

I am a firm believer in the power of caffeine to cure many of the ills of life, and especially the ills of trying to work with a chronic illness.

And I’m only saying this somewhat tongue-in-cheek.


I am a firm believer that caffeine is the best medicine ever. Yes, it’s a tad addictive and rather expensive (which is why I most definitely do not add up what I spend on my coffee habit!) but it’s often literally the only thing I can do in the morning to get myself up and going and feeling filled up. 

Iced coffee, drip coffee, espresso drinks… some combination of all of these is a big part of how I survive my full-time job with a chronic illness. 

I deal with a lot of pain from my neuromuscular disorder and fatigue from my autoimmune disorder so am always looking for ways to help myself in these ways. Some things I do are pretty self-explanatory: getting enough sleep is important! same with eating well and all that stuff.

But some other more novel things help, too: 

Enter: Cassius, service dog extraordinaire! I’ve been partnered with a service dog for three years now, and he helps me immensely with reducing pain, conserving energy, helping me navigate my commute, and providing an awesome distraction from my pain during the workday. He can happily pick things up for me when I drop them, offer counterbalance going up and down the many BART stairs I maneuver on a daily basis (because the elevators are slow and nasty. Bad combination!) and opening and closing doors, drawers and cabinets for me.

During my workday I try to take a decent number of breaks to either plop down in the breakroom or get outside and enjoy some fresh aid and to change up what I’m doing, luckily my job at a library really allows for doing a bunch of different things throughout the day. This helps me alternate what areas are less painful than others. It’s facetiously better to have many things hurt a little than to have one thing hurt too much!
Lastly, taking a bit of time for myself to devompress after and before work is vital – whether it’s reading (it’s quite nice to have access to thus ands of books all the time!) or playing ridiculous computer games (Frozen Free Fall, anyone?) or hanging out with puppies and horses on my hours and days off is vital to my sanity and health.

Working is important to me. It means that I’m contributing to society, making my mark in the workplace, and (every so often) changing people’s lives – and sometimes their perceptions of what people with disabilities can accomplish. I don’t necessarily focus on that, but I don’t argue with it when it happens!

For more tips on Self-Care, check out http://selfcaremvmt.com/

Disability & the Newbery

Review: The War that Saved My Life

Once again, a book featuring a protagonist with a disability received a Newbery Honor! This year I was especially excited both because I had reviewed the book for the Disability in Kidlit blog, and because it featured a girl with a clubfoot – one of my medical conditions!

Books were a powerful connection tool for me as a young girl with a bunch of medical stuff going on, in the pre-Internet, pre-support group world. I devoured anything remotely related to disability, hospitals, surgery, all that fun stuff. I’m so happy that these books are being written and getting traction from audiences and librarians. Need to find and read the other Schneider award winners now!

Childhood “Favorites”: Medical Edition

 My parents are cleaning out the attic of their house, and I got an e-mail with this blast-from-the past: Mister Rogers medical books!

 

I still remember these books well. And that’s kind of sad. I think I took “working through past medical procedures” a bit too intently… we also found my favorite doctor’s kit. I donated a bunch of toys and dolls and books, but these I’m keeping.

I’m keeping them as much for what they represent than for anything else. These books represent my experiences growing up with doctors and hospitals and operations and casts and appointments followed by yet more appointments. They represent me trying to make sense of that reality, and the resources that were available to me do that. They represent the efforts of those around me to prepare and educate me about these experiences (apparently not only did I go on a “surgery tour” at the age of three, I actually asked questions of whoever was leading it. Precocious much?)

Certainly education about the impact of early childhood medical intervention has improved, and I’m sure there are more sophisticated preparation materials available to children and their parents now – but finding these books makes me grateful that at least something was available during my childhood.

This series was certainly well-read and well-loved.

What if there aren’t “Ten little fingers and ten little toes”?

When I was choosing my books for storytime last week at the library (due to some staffing changes, I am now doing the occasional storytime! Slightly petrifying but satisfying when it goes well and toddlers and caregivers leave happy!) I found a classic on the shelves: The Little Fingers and Ten Little Toes by Mem Fox and Helen Oxenbury.

The refrain of the book, told in rhyme, is

And both of these babies, as everyone knows,
had ten little fingers/and ten little toes.”

Upon re-reading this time, I was struck with the conundrum of… what in the world would I do if a child with a hand or foot animality came into this storytime? What rules do you follow when dealing with truly exceptional uncommon differences?

I do not have the hand anomalities sometimes associated with Moebius syndrome (although I do have rather crooked index fingers!), and clubfoot and residual issues from that, but I kind of thought about this the way I think about the colloquial use of smiling in our lexicon. If I got truly offended anytime something – a song, an advertisement, a common phrase – mentions smiling, I would truly spend my life offended.

And honestly, there aren’t statistically that many of us who cannot smile (or have “unique” smiles) that it makes sense that it doesn’t figure into the scope of thought. While it’s great to point it out, and helps awareness and understanding, I have also learned to take a deep breath and look holistically at these things. But children usually don’t have that perspective. I know I spent a few years very offended when people mentioned smiling, no matter how innocuous. The last thing you want to do is offend someone from a simple book.

So this takes us back to the seemingly innocuous children’s rhyme… What in the world do you do? “And both of these babies, as everyone knows, had ten little fingers/and ten little toes… except for the ones with hand and foot anomalities, who may not!?” I didn’t say that this time, but it made me pine for some great very basic books about children with disabilities. It’s tricky to find disability literature for children that isn’t too saccharine or implausible – the Schneider Family Book Awards are wonderful, but they tend to award picture books for older readers (as well as middle grades and young adult) I have a ton of resources for middle grades and even late elementary, but a storytime appropriate book about those babies who may not have ten little fingers and ten little toes would be magnificent.

Young children are so receptive to differences and are sponges… I would love to harness this openness for awareness of differences both big and small. So that is my resolve in a few weeks when I next do storytime, to search for good books about differences that will teach that even though babies might not all have ten little fingers and ten little toes, they are all equally loved and special.

Found this in my recent read

It’s fascinating when I find mentions of things I’m interested in (in this case, craniofacial differences) in a book completely unrelated to the topic. I loved this description, too , quite apt. Plus I just really love JK Rowling ‘s writing, whether it’s in her children’s books or her adult mysteries written under a pseudonym.
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On My Bookshelf: Jacob’s Eye Patch

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Jacob’s Eye Patch
by Beth Kobliner Shaw, Jacob Shaw, Jules Feiffer (Illustrations)

Being different can be hard.

This funny, spirited story—written by bestselling author of Get a Financial Life Beth Kobliner Shaw with her son Jacob, and illustrated by award-winning picture book artist Jules Feiffer—encourages young readers to embrace the thing that makes them unique…Jacob is in a hurry—a really big hurry—to get to the store to buy a special toy. There’s only one left, and if he doesn’t get to it soon, he’ll never forgive his mom and dad for making him late. Strangers often stop Jacob’s parents on the street to ask about him. See, Jacob is unusual: He has an eye patch. Jacob knows people like to ask questions, but do they have to ask right now?

Luckily, Jacob gets to the store in time, and he meets a new friend who has something different, too. In the end, Jacob’s journey makes him more aware of other people’s feelings. Jacob’s Eye Patch is the go-to book for talking about differences that kids can enjoy and parents can turn to for guidance.

Everyone has something different! What’s your something? Share your child’s story at JacobsEyePatch.com. –Goodreads

This book was just published, and I can’t wait to read it!

My review is coming soon.

Hopefully I can add it to my list of valuable books on differences. I’ve read numerous books on all kinds of disabilities, but I don’t think I’ve ever read one on eye patches yet. As a long-time eye patch wearer, I would have been positively obsessed with such a book as a child!

I hope I like it – We’ll see!

NYT: “Publishers Revel in Youthful Cruelty”

NYT: “Publishers Revel in Youthful Cruelty”

I found this article fascinating.  I have to say that, as much as I loved Wonder for the facial difference angle, I completely understand the NYT’s view that

For publishers and authors it has been hard to miss the perfect synergy that results: They can promote a cause that most people avidly support while promoting their own products.

That’s the danger I see, of trying to address what is a legitimate problem while not sensationalizing or exploiting it.

Yet at the same time, it is a very important and serious.  It’s a fine line in our increasingly-commercialized and commodified culture (yes, that does sound over-dramatic!) between doing good and profiting from that.

Ultimately, though, I think the good that these books and the general cultural awareness surrounding bullying do outweighs any commercial gains.

Recommended Reading: About Face

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I love photography. I find it simple yet beautiful. I wrote my master’s thesis on the Positive Exposure photography project, and I love seeing photographers exploring differences.

Photographer Sage Sohier spent time at the Facial Nerve Center at the Massachusetts Eye and Ear Infirmary in Boston, photographing patients – most before surgery. I loved how frank these photographs were, not that they glorified distinctive-looking faces, but that they didn’t try to hide or camouflage anything. I found them simple and beautiful.

Facial difference is a strange disability to have, in that it is not in the public’s consciousness. I love that the world – at least the art/academic world – is paying attention to, even highlighting, them. For both people with congenital or acquired conditions (I would have loved this book as a child!), it’s a remarkably powerful thing to be exposed to people who look like you.

Overall, I highly recommend this book for anyone affected by or interested in facial differences.