Disability Pride Month Reading

July is Disability Pride Month, and Sunday, July 10th is Chronic Disease Awareness Day

For me, July also marks  the anniversary of “the day,” — the day I went into the hospital with a swollen left calf, unable to walk, unable to stand, without knowing that was only the beginning of my life with an invisible disability. (Twelve years ago this month.)

After I became ill and was finally diagnosed, I went looking — for help, for support, for community — in books. I didn’t find much.

Since then, however, my library has expanded and includes books that speak to my life with an invisible disability. Not necessarily because the author also has an autoimmune disease or chronic pain in her left leg. In fact, the specific details can vary widely, yet it’s the emotions we share. I read these books, and feel understood, and heard, and seen. And when you’re living with a medical condition that isn’t easily understood — by those closest to you and those treating you — that sense of community is huge. 

So this week, I’d like to share just a few books in honor of Disability Pride Month and Chronic Disease Awareness Day.

Bravey by Alexi Pappas. The specifics are very different (she’s an Olympian after all!), but the emotions are similar. My copy is full of sticky notes. (You can check out my blog post, “Trying To Be a Bravey,” by clicking here.)

The Things We Don’t Say: An Anthology of Chronic Illness Truths edited by Julie Morgenlender. I’m proud to say my essay, “Chronic Contradictions,” is included in this incredible collection. In this anthology “forty-two authors from around the world open up in fifty true stories about their chronic illnesses and their search for answers, poor treatment by doctors, strained relationships with loved ones, self-doubt, and more.” (You can read an earlier blog post written shortly after the anthology was published by clicking here.)

Chronic Resilience by Danea Horn. I don’t remember how I discovered this book. I just know I felt so lucky to have found it. I have read it more than once, and even wrote the author a fan letter! I highly recommend it. (You can learn more about the book here.)

The Pretty One by Keah Brown.  I found this book at Target and was captivated by the author’s smile and joy that is so evident on the front cover. (I wrote a blog post about Ms. Brown’s book and several of my favorite passages. You can read it here.)

No Cure For Being Human by Kate Bowler. Incredible writing. Beautiful, profound, and funny too. (This book I read fairly recently, back in April. You can read my blog post, “No Cure For Being Human,” by clicking here.)

Readers, any recommendations? I’d love to hear about books you have read that you think those of us with disabilities and/or chronic diseases would enjoy reading.  

No Cure For Being Human

No Cure For Being Human (And Other Truths I Need to Hear) by Kate Bowler. 

Wow.

And then after the initial “wow,” several adjectives come to mind — beautiful, heartbreaking, touching, profound, funny, moving.

I am blown away by the incredible way in which Ms. Bowler wrote her story — being diagnosed with stage 4 colon cancer in her 30s. She didn’t just write about it, she invited readers in. And along the way, shared some truths I know I needed to hear.

Here are just some of the passages that moved me:

“Before when I was earnest and clever and ignorant, I thought, life is a series of choices. I curated my own life until, one day, I couldn’t. I had accepted the burden of limitless choices only to find that I had few to make.”

“From my hospital room, I see no master plan to bring me to a higher level, guarantee my growth, or use my cancer to teach me. Good or bad, I will not get what I deserve. Nothing will exempt me from the pain of being human.”

“It’s easy to imagine letting go when we forget that choices are luxuries, allowing us to maintain our illusion of control. But until those choices are plucked from our hands — someone dies, someone leaves, something breaks — we are only playing at surrender.”

“The problem with aspirational lists, of course, is that they often skip the point entirely. Instead of helping us grapple with our finitude, they have approximated infinity. With unlimited time and resources, we could do anything, be anyone. We could become more adventurous by jumping out of airplanes, more traveled by visiting every continent, or more cultured by reading the most famous books of all time. With the right list, we would never starve with the hunger of want.
But it is much easier to count items than to know what counts.”

“I did not understand that one future comes at the exclusion of all others.
I had wanted two kids.
I had wanted to travel the world.
I had wanted to be the one to hold my mother’s hand at the end.
Everybody pretends that you only die once. But that’s not true. You can die to a thousand possible futures in the course of a single, stupid life.”

“The terrible gift of a terrible illness is that it has, in fact, taught me to live in the moment. Nothing but this day matters: the warmth of this crib, the sound of his hysterical giggling. And when I look closely at my life, I realize that I’m not just learning to seize the day. In my finite life, the mundane has begun to sparkle. The things I love — the things I should love — become clearer, brighter.
Burdened by the past, preoccupied by the present, or worried about the future, I had failed to appreciate the inestimable gift of a single minute.”

“It takes great courage to live. Period. There are fears and disappointments and failures every day, and, in the end, the hero dies. It must be cinematic to watch us from above.” 

“It became clearer than ever that life is not a series of choices. So often the experiences that define us are the ones we didn’t pick. Cancer. Betrayal. Miscarriage. Job loss. Mental illness. A novel coronavirus.”  

“Time really is a circle; I can see that now. We are trapped between a past we can’t return to and a future that is uncertain. And it takes guts to live here, in the hard space between anticipation and realization.”

And the book’s appendix is brilliant. Ms. Bowler has written a list of “clichés we hear and truths we need,” including:

Things People Say: Make every minute count. 

A More Complicated Truth: Life is unpredictable. You’re a person, not a certified account.