A Show About Humanity with Two Guys In Charge

Have ya'll been listening to Jason Lehmbeck's and my podcast? I sure hope you are, but if you're not, you should start today because two of the finest young men on the planet had a discussion with us about what it's like being a sibling and growing up in a family with a child who is medically complex or who has special needs. Confession: it's getting more and more difficult for me to figure out how to write a descriptor -- how to describe my daughter in language that is clear and factual and that doesn't further stigmatize her or others like her. Special needs, medically complex, disabled, differently abled, people first, etc. etc. ad nauseum in these -- what should I can them? -- fraught times.

Anyway, my son Henry and his roommate Toby spoke on Who Lives Like This?! about their lives growing up in families with one or more children with disabilities. They also talked about their feelings, their friendship, their futures and their hopes. They shared their wisdom and experience. I think they will open your minds and break open your hearts.

Here's the link to the show. Please do us a favor and share it far and wide. We hope to continue to build a community, and this show is not just for those affected by disability or medical issues or caregiving. Dare I say it's a show about humanity?

Who Lives Like This?!

Alison

photo via Charleston City Paper

That beautiful woman is my friend Alison Piepmeier. I have never met Alison in person, but I've read her writing for years, delighted in her adorable daughter Maybelle, and one, glorious night talked on the phone with her for more than an hour when she was visiting southern California. She appears in the extreme parenting video that I made years ago as well (her writing about Maybelle's Down Syndrome is some of the most incisive disability writing today). Alison is a rebel, an intellectual, a raucous feminist, and a warm and beautiful person of formidable intellect. She just had brain surgery and is struggling to articulate herself in the way she has for many years as a vocal advocate for the disabled, the underserved, women, and the LGBT community. The surgery impacted the part of her brain that governs speech and language, and while she has a good chance of recovering, she still faces chemo and radiation. This morning, I sat in bed sipping coffee and was delighted to see that she had written a column again for the Charleston City Paper. What I didn't expect was to find myself weeping pretty copious amounts of tears into my coffee. The column is decisively NOT inspiration porn -- that bane of many of us in the disability community -- but it is at once heartbreaking and tremendously inspiring. It'll take your tears and your breath.

Molto forte e corragio, Alison. We love you.

Carrie and Today's Blog Inertia, Overturned

I've been sitting at my computer all morning, filling out online health insurance claims, making neat stacks of paperwork, listening to the tinny strains of the Los Angeles Unified School District's hold music and periodically staring at this blank white space wondering what to write. I posted the daisy photo as inspiration because you just never know what'll strike you. As you know, I rarely have blog inertia, but in feeling sort of over-exposed and dry, dry, dry, I've been basically just conjuring up tidbits and observations of late. Offline, I'm working on a short story and -- well -- enough blathering about nothing.

My writer friend Carrie Link of love. and the author of one of my favorite memoirs, Will of God, just heroically rose out of her own self-described blog inertia and posted an amazing review of my mini memoir. You can read it here.

Thank you, Carrie and thank all of you who've downloaded and read this thing. It means the world to me, to use a blog inertia-provoked phrase.

xoxoxoxo

Writing and Gifts from Old Friends and Sisters

I started meeting once a week for a few hours with a group of writers. It's not a workshop group but, rather, a real writing group. We really write. At the beginning, we sit down and chit chat for a few minutes, catch each other up, briefly, on what's happening. Then one person tears up a few strips of paper and we each grab one or two. We write down phrases or words, anything that comes to mind and can be used as a prompt. Then someone picks up a piece of paper, opens it and reads it aloud. Then we write -- the first prompt is for five minutes, the second is for ten minutes, then it's fifteen and then back to five minutes. When the buzzer goes off, we stop typing or writing and read aloud what we've written. We don't comment, except to sigh or smile or laugh or draw our breaths in. Then we're on to the next. We follow in a specific order -- whoever opens the prompt and reads it aloud is the first to read aloud what she's written. Then we go counter-clockwise. It works. This is so good, you writers out there -- so good and so inspiring in the way that writers need to be inspired. You just start with something, anything, and then you write. I've always thought there's way too much discussion about writing in general -- about how difficult it is, about whether or not you're good enough, about the anxieties and insecurities of The Writer. Lately, I've noticed a whole lot of hullabaloo about writing for free on the internet, how resentful "writers" are when they're asked to write online and not get reimbursed. My opinion is that there haven't been too many writers in history that got paid enough money to support themselves and that if you're a writer, you'll just write, whenever and however you can. If you're getting paid and can support yourself, I envy you. If not, get a job, but don't stop writing.

Here are the prompts from a week or so ago:

1. My skeleton
2. Blood-shot eyes
3. A Sense of place
4. The Rain They Say is Coming

This week, I got a spark of a short story from the prompt It Goes Like This. Think a man, tattoos, a bald head, the goods, the threat of a cult, Jesus freaks and the slippery slope of desire -- that's what I wrote about for five minutes.

When I got home this afternoon from the usual driving around the city, I had a pile of mail, including two mysterious packages. One was for Sophie, and when I opened it up I saw that it was from one of my oldest and dearest friends with whom I backpacked through Europe in the Let's Go Europe! days. Do you remember those? This beautiful, brilliant woman sent that mermaid to Sophie, and I'm taking it as a token of luck. Sophie did really well today, too, but who's noticing? The other gift was from my funny sister Melissa. She sent me a Ryan Gosling coloring book. She knows me all too well. Henry and Oliver took one look at the gifts and rolled their eyes. Are you really going to color that? Henry asked. I told him that I imagine it will be enormously relaxing to sit and color in Ryan Gosling's lines. You'd think I was stoned, but I'm not. I'm CBD'd excited.

The Mind of Summer

Chinatown, Victoria, British Columbia

Maybe it's the week of rest and relaxation, now a sort of distant thing but for the quiet within. Maybe it's the plunging back in, the laundry, the late mornings, sleeping in, the shouts of summer, the brooding, the heavy blanket of relationship. Or maybe it's the five thousand, six hundred and eighty-six episodes of Brothers and Sisters that I've watched on my Kindle Fire.  I'm reading The Middle Passage, a slim book written by a Swiss Jungian analyst. Maybe it's the subtitle of the book, From Misery to Meaning in Midlife. In any case, I'm hard put to write anything at all.

Disability and Surfing

There's been a lot written lately in the disability world about "disability porn," -- the kind of stuff that those who are not so acquainted with disability are inspired by but those in the disability world often find denigrating at worst and condescending at best -- sentimental and perpetuating the separation between those who have and those who have not.  I was clicking through my blog-roll this afternoon, though, and loved this video posted on The Improvised Life. I didn't find it "inspirational" in the least, but, rather, yearned to be velcro'ed myself onto someone's back so that I could finally, finally go surfing. And don't you be going why don't you just go out to the Pacific at your back door with a board and do it? I'm busy right now, reading War and Peace, you know?

Love for this world,

of which I am a small part:


The Great Bell Chant (The End of Suffering) from R Smittenaar on Vimeo.


Turn your volume up and watch full screen!

Raindrops like Stars

I sat here this morning as the light fell in slanted and shadowed with a cup of coffee and silence. Everyone else was sleeping. I pulled a book off the shelf and started reading it -- a book that someone sent me long ago that I would say falls into the Christian literature genre -- maybe even Christian self-help. It's by Rob Bell and called Drops Like Stars. I had shelved the book when I got it, after a quick and cursory look-through, lots of pain and suffering, the man on the cross, the agony, etc. Lots of inspiration. But this morning, I opened it halfway through and started reading it, only a few words on a page.

So in the end of every major disaster, every tiny error,every wrong turning, every fragment of discarded clay, all the blood, sweat and tears -- everything has meaning. I give it meaning. I reuse, reshape, recast all that goes wrong so that in the end nothing is wasted and nothing is without significance and nothing ceases to be precious to me. (the character Harriet March, a sculptor in a novel by Susan Howatch)

My coffee steamed in my face as I read on, illuminated by chance.

Saturday Inspiration

Source: flickr.com via Elizabeth on Pinterest