Pain Woman Takes Your Keys by Sonya Huber

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I discovered Sonya Huber when she initiated plans for the virtual Disability March in January. When I found an advanced reader copy of her book of essays called Pain Woman Takes Your Keys on Netgalley, I didn’t hesitate. I sent a request to receive one. That was one of the best decisions I’ve made in a while.

Sonya’s work is on a whole other playing field. Her writing is visceral, yet tender. She says early on that she hopes that the book isn’t depressing since she had so much fun writing it. I felt a lot of emotions as I read the book. Not one of them came anywhere close to depression! These are all previously published, but I thought the unique structure added to the power of each individual essay.

Not only do we get the power of her experience, she is well-read in the field of pain. I added several books to my to-be-read list to explore others’ experiences with pain more deeply.

One of the ways she lives in the midst of pain is called “pain selfies” to help her love her self in pain. I love the way she talks about buying and using her cane. I felt similar emotions when I started walking with my cane and can relate to her feelings of vulnerability when her cane spoke silently of “all they [others] cannot see.”I thought asking people to send her stickers to make her cane “a joyful explosion of adhesives that draws more attention and brings more joy than an anonymous metal pole.”

My favorite part of the book is when she tells us about herself as a writer and how pain affects her writing voice. “Pain Woman has stuff to tell you, and she has one minute to do so before she’s too tired.” She talks about how we need to listen to ourselves as we swim in our multiple voices. We have to wrestle with what we hear, which might not match our idealized versions of ourselves. There’s more that she describes as part of her experience as a writer who experiences pain, but I want you to read it for yourself.

This book was everything I expected it to be and even more. Read it. You won’t be disappointed.

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Dancing With Elephants by Jarem Sawatsky

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I read an advance reader copy, and I’ve been trying to figure out what to say about it since.

The amount of wisdom contained in this book is unbelievable. Jarem interviewed Jon Kabat-Zinn, Patch Adams, Lucy Kalanthi (wife of Paul Kalanthi who wrote When Breath Becomes Air), Jean Paul Lederach, and Toni Bernhard about living with chronic illness. He comes from a Christian background, but is heavily influenced by the teachings of Thich Nhat Hanh. It’s a unique spirituality that makes this book just that much more special.

His story of living with Huntington’s Disease as a family member (it is genetic) and after he received the diagnosis he had expected to get is not sad or sentimental in any way. You don’t feel sorry for him in any way when reading this narrative. He “transformed fear into joyful dancing.”

The cover is one of the most fun I’ve ever seen. I would never have considered dancing with elephants as a way of going through, but Jarem not only makes it seem bearable, but a love-filled joy.

If you need some encouragement in living with joy, read this book. It will change your perspective on everything. Even if you don’t have a chronic illness, I recommend this book. It’s one that will stay with you and teach you something new with every page.

I love his poetry as well. It enhanced the prose in a way that blessed me.

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A Million Ordinary Days by Judy Mollen Walters

I saw this book in the Goodreads giveaway list and was intrigued by the description. I requested a review copy from the author, and she sent it right away. The full novel far surpassed my hopes.

She included so many of the struggles that can face a family affected by a loved one’s chronic illness. At the beginning of the story we see a family that has learned to cope with Allison’s multiple sclerosis (MS )over the years in their own individual ways. Things are going as well as could be expected.

We can see the cracks start to appear when Allison doesn’t recover from a setback as quickly as she has previously. Suddenly she’s no longer able to fool her ex-husband, her doctor, and her daughters–one of whom has been estranged for several years. Of course, this change comes at the worst possible time. Her ex is in a new relationship that is quickly becoming serious and making him rethink his role in Allison’s life. Her younger daughter Hailey is in high school about to start looking at colleges and think of moving away for the first time. Her older daughter Melanie lived feeling like no one cared about her and gave her what she needed. She was an alcoholic in high school, and left as soon as she graduated. She looked like a healthy businesswoman living a life anyone would want, but her recovery didn’t help her find a life that made her happy.

Allison defined herself by her work, so her family suffered. So did her body. She had to return to school for social work when she could no longer function effectively as a physical therapist. Her career was so important that she kept going well past the point that it was healthy for her. I was frustrated at her care and compassion for her clients, especially Daria, because I wasn’t sure it came from a healthy place in her heart. It seemed she had a more effective parenting relationship with her clients than her own daughters. I wasn’t sure how much of the commitment to her career stemmed from her refusal to admit that the MS was getting worse. As someone who wanted to spend her career doing work like Allison’s, I saw that the relationship with Daria was too intense for the boundaries she needed to function with her limitations.

It was a conflict I understood well. Letting go of work was the last thing I wanted to happen. Everyone with a chronic illness or disability who has had to make that choice feels Allison’s pain at some point in the process. I’m glad she found a way to  balance her boundaries to have a full life, care for her daughters with her whole heart and to let a new man into her world.

Chronic illness and disability changed her life in ways she couldn’t fix alone. She had to work with them and allow people to help her. If she hadn’t gotten sick, I wonder what would have happened to her marriage. I suspect her commitment to her career might have eventually forced a crisis point in her relationships.

I’m also glad we were left with a hopeful ending instead of following Allison to her eventual final end. I think that is a good message to leave those of us struggling with illness and disability.

Release Day March 14.

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Handle With Care by Jodi Picoult

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Every time I read this book, I find myself more challenged than the time before. When I first read it, I focused mainly on the “wrongful birth” issue which was at the heart of the novel. I still find myself horrified by the idea of saying that any person, no matter how severe their disabilities, should or should not exist. I struggle to put myself in the shoes of the mother who loved her child deeply and completely, but was able to see the idea of “wrongful birth” as an opportunity to provide for that child in ways that she knew she and her husband would probably not be able to do throughout Willow’s life.

Somehow or other the idea of accusing her dearest friend of something so reprehensible became acceptable in the name of a different kind of love. A love that bordered on controlling martyrdom. A love that no longer recognized someone she supposedly cared for so deeply as an individual. No one existed as an individual in her world anymore, especially Piper. Piper had helped her bring that child into being and had the place of godmother to Willow. She became a sacrificial pawn in Charlotte’s efforts to bring about her warped kind of justice.

As people with disabilities often do in storytelling, Willow became a symbol of something else. We see her through everyone’s eyes except her own until the end.

I love this book, but I love it differently than I did when I first read it. It wasn’t Willow’s story at all. I’m not sure if it’s actually about what I thought it was. Is this the story of a mother and her child? Or is really about a world where ableism is so deeply ingrained in the world that such questions are even raised?

The lawyers took a question about the treatment of a family of a child with a disability and turned it into a question about that child’s right to be born. Maybe it isn’t about their right to exist. Maybe it’s about their right to LIVE. The world seems to have a hard time with our right to LIVE.

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What Do You Need to Create Art?

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This right here is why creating any kind of art, including poetry and other kinds of writing, is so incredibly difficult to do. When you have a broken heart, it’s hard to feel the way you do, much less think of doing something constructive with it.

But the heart is where the deep creating comes from. If you don’t let yourself feel the feelings and work through them to be able to write (create art) about them, you might write something pretty, but with no emotion behind it. You can’t touch others’ hearts if you’re not wiling to touch your own pain and share it openly.

“Take your broken heart; make it into art.” What brilliant advice from Carrie Fisher. May we take those words to our hearts and live by them.

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It’s Not Just About Creativity

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I needed a prompt today, so I Googled “creativity quotes” and found this one. I had never heard it before, but it seems like a wonderful way to focus my intentions for the New Year.

I want to grow into someone I’ve never quite known before in 2017. I don’t want to lose the good parts (compassion, curiosity), but I want to become a creative person. I don’t just want to create things or blog posts or poems. I want to be creative. I’m trying to figure out exactly what that means. I want to approach my world with the kind of glasses that help me become that person.

Who will I be on the fourth day of January 2018? Who do I want to be? I want to be a brave person. I want to be vulnerable in relationships. I want people to see who I really am, instead of hiding behind some ways of interaction that feel safe, but keep me from the kind of emotional intimacy I long to find in relationships.

How can I get there? I wish I knew. I’m trying to dig deep through my writing. I sit here and wonder if I focus too much on myself or not enough. I want to be the person I want to find for myself.

It’s so hard to find my way. I feel like I can’t see the forest for the trees. So I’m going to try to cut through some of the crap to find what I know is there. The answers to me are there. I just have to keep cutting through the crap.

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Just Like Other Daughters by Colleen Faulkner

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This is my first read of 2017, and it’s a re-read of a favorite. I also re-read all the reviews before writing this. Some of the criticisms are fair. The ending is abrupt (no spoiler), Alicia isn’t the most likeable parent on the planet, and there are stereotypes of people with intellectual disabilities rampant in the narrative.

However, life doesn’t always give closure when life happens. I guess that’s why an abrupt ending feels okay here. I know that many readers don’t like it when the climax comes so close to the end of the book, and you don’t even have time to catch your breath. But I do. It feels realistic when that happens.

Again, Alicia (Ally) wasn’t the most likeable or the most politically correct parent on the planet. Her counterpart, Thomas’s mother Margaret, was much more likeable. She was pleasant and cheerful and fully supportive of his inclusion in certain activities. But when it came to the relationship between Chloe and Thomas, Alicia was the more realistic parent about the limitations of these two individuals. Not all mentally challenged people are incapable of romantic relationships, but this isn’t a story about people in general. This is a story about Chloe and Thomas. It may not have been politically correct to resist their marriage, but Alicia knew her daughter. She knew what she could handle and what she couldn’t. I don’t think that Margaret realized the impact that this relationship could have on everyone.

At the end, who was affected the most by what happened? Not Margaret and her husband. Chloe and Thomas lived with Alicia during their marriage. Yes, there were things I’m surprised that Alicia didn’t handle differently (birth control being one of them). That came from her denial of the possibility of sexuality for someone with an intellectual disability. By the time she realized her mistake, she couldn’t take some of the actions she might have if she had dealt with it when Chloe was younger. (I’m not saying that those actions would have been the right thing to do, but they would have been alternatives that many parents might have considered.)

I’m not sure what I would have done in her shoes. All I know is that everything I know and believe about intimacy for people with disabilities was turned upside down for re-examination. I don’t know if it will ever look quite the same.

Now that’s a novel.

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