The Grit and Grace of Caregiving

My friend and fellow caregiver, Jason Lehmbeck, and I have launched our passion project, a podcast about and for caregivers of children and young adults with special healthcare needs and disabilities. It's called WhoTF Lives Like This?! and is available anywhere you listen to podcasts. We've been working on this for more than six months, and I am just so excited to tell you about it. We'll be interviewing the most amazing people who do the most amazing things with their lives -- both publicly and privately. We'll be talking to men and women who care for their children with special healthcare needs and disabilities, to siblings and to those who support us -- the doctors, educators, therapists, etc. working to help and make our lives and the lives of our children better.

I hope you'll subscribe to the podcast, check in regularly at the website to learn about the guests, interact with us on our Facebook page and in the comment section or otherwise get in touch with your suggestions and ideas. If you'd like to be a guest, you know where to find me!

You can listen to the teaser which gives you a good idea of what we'll be doing on the podcast, and we've also launched the first episode where Jason and I interview one another in much the same format that we will be using going forward.

Please help us to share this resource with all those who might be interested. This is a podcast for everyone. While the podcast pays particular attention to the lives of caregivers, their grit and grace is relevant to all human beings, and just like we have found, our work with and love for these most vulnerable of our fellow humans will expand your own heart and view of the world.

You can access the podcast at our website HERE.

Please subscribe! Leave a review, too! Thank you!

Re-Cap

I sort of panicked when I logged in to the old blog and saw that I hadn't written a post in over a week. I don't know what's happening to me, but I'm finding it difficult to get the words down and out. I feel a sort of pressure to write well here -- to write something meaningful, to exercise the muscle for the offline writing, but that takes so much out of me. I used to come here and just gab on some days, and I kind of miss that. Do you? I feel that we have a whole lot of gab to deal with nearly every single moment in the clusterfuck that is our country right now. Why should I add to it?

Here's some gab: Henry was home for nearly a month and is already gone and back to college. It was wonderful to have him home and weird, to tell you the truth. It was like he never left. The fighting with his brother, the piles of clothes on his floor, the empty cereal bowls and crusty spoons left out, the boxers on the floor of the bathroom -- shall I go on? But left he did indeed -- back in August and now again, last week. I actually remember what that experience was like -- to leave for college and then to come home. To have your parents still -- your parents. I cringe at how I probably was insufferable then. Not that Henry was insufferable -- to the contrary. There's a certain amount of angst, though, that comes with the age. We live in weird times and seem so much closer to our children than we were with our own parents. At least I think.

In other news, I did a reading on Sunday with a couple of dear writer friends. We were part of Diane McDaniel's Backyard Literary Salon and read from works-in-progress. I had done a podcast with Diane a few months ago, and she invited the incomparable Chris Rice and Tanya Ward Goodman (who also did podcasts with Diane) to read, too, along with her own writing. We had a really great turn-out of about sixty people, got over our jitters and stood up there and rocked it. I think the others would agree that it was glorious. There's something awesome about expressing yourself in amazing company -- I felt galvanized to keep at it -- to finish up MGDB*.

I so rarely like to post photos of myself all alone, but the inimitable Carl Jackson, Bird Photographer Extraordinaire and love of my life (!) took these and I actually like them. I'm trying to shed some vanity in 2018 and get over my snaggle tooth, my chins and roundnesses. I'm trying to consume less and create more.

Hold me to it.

*My Goddamn Book

Musings on Rejection and Dejection or Drejection

I'm a week and a half away from leaving for three weeks, and I feel as if I'm wandering around in circles. I'm not complaining. I just don't know what to do first. My legs are leaden and my head filled with cotton. I feel strangely dejected despite all the good fortune coming my way.

I pulled a card out of my Poet Tarot deck this morning to see what I had in store this week. I got the Five of Mentors. I consulted the guidebook and learned that key phrases for this card are: disagreement within creative groups, being flexible in my artistic vision, choosing battles wisely.

Here's my advice to you, if you're a writer. Submit your work widely and then chill out. Chill out when you get rejections because you'll probably get a lot. For every ten things I've sent out over the years, I get about eight or nine rejections. Years ago, a literary agent sent a manuscript back to me with the words too sad written on the cover sheet. That was it. Sometimes rejections are wildly entertaining, like the one I got over the weekend from a literary journal named after a body of land with some amount of water around it. This is what it said:

Dear Elizabeth, 

Thank you for sending your work. Unfortunately, "Dreaming of Sex During Acupuncture" is not for us. Good luck with your writing and thank you for your interest in [name of journal]. 

Sincerely, 
the editors 

Doesn't that tickle you? I imagine you're wondering about the title of the piece I sent in, and hopefully you'll read the whole thing one day because I'm sending it back out. I'll keep you posted.




While vacuuming my car this morning, I pulled Frank O'Hara's little Lunch Poems out of the door pocket and opened it up, even as I scraped the dead leaves and grit from the floor. My heart is in my pocket, I read from the poem A Step Away from Them. How perfect is that? My other advice to writers is to read all the time and stash small poetry books in weird places.


Have I told you about my obsession with the Annunciation? Given my estrangement from the Roman Catholic faith, I'm not sure why I find it so compelling, but there's something about a big old angel leaning down to softly tell a virginal woman that she'll be carrying the son of God that knocks me flat. There's all this grace inherent in the gesture, I think. My favorite painting is Fra Angelico's Annunciation, and after visiting Italy for the second time and seeing it, after which I had a disturbing encounter with an epileptic young woman, its significance became all the greater. You honestly can't make that shit up, and I didn't. I did write an essay, though, that was accepted for publication by Slow Trains years and years ago. It was rejected at least five times before being accepted. You can read it if you like.

Anyhoo.



Mary Szybist wrote an entire book of poems about the Annunciation. It's called Incarnadine. Here's one of the poems:

Annunciation Overheard from the Kitchen

I could hear them from the kitchen, speaking as if
something important had happened.

I was washing the pears in cool water, cutting the bruises from them.
From my place at the sink, I could hear

a jet buzz hazily overhead, a vacuum
start up next door, the click,
click between shots.

"Mary, step back from the camera."

There was a softness to his voice
but no fondness, no hurry in it.

There were faint sounds
like walnuts being dropped by crows onto the street,
almost a brush
of windchime from the porch -----

Windows around me everywhere half-open ----

My skin alive with the pitch.

Mary Szybist



Maybe I'm weird, but that just blows my tiny little mother mind.™

Podcast for Expressing Motherhood

I had such a good time doing this podcast for my friend Lindsay Eller Kavet of Expressing Motherhood. It's always a little disconcerting to hear your voice -- do I really sound like that? -- but I'm definitely a talker, and I just love Lindsay and really admire how she supports creative women and mothers. Check out her site and consider submitting and doing one of her shows. Upcoming ones are in San Francisco and South Dakota.

Thanks, Lindsay, for this opportunity!

Listen here.

How Not to Figure Things Out

dedicated to Mary, Tanya, Heather and my Mom

It occurred to me the other day that I'm not going to figure things out. I probably use that expression many times a day in various forms -- I can't figure it out, You'll figure it out, Figure it out! I need to figure it out, Just figure it out! -- and certainly popular culture is filled with tips on how to do it or on how other people have done it. I can figure out a math problem or how to work my new phone or what to do about Oliver's schooling or how to help Henry navigate high school, but there's no figuring out the really big life things. I'm not saying that things just happen without effort and thought, but it's a rare big life thing that is figured out in the sense that one comes to an answer in a direct way. Does this make sense? Because there's a lot that is unbloggable now in my life, I might sound vague, but what I can draw an analogy to is my early years with Sophie, right after she was diagnosed and probably for the next ten years or so when I was always trying to figure things out. This meant many active hours of brain anguish, of being on all the time, in the event I'd miss something. When I say that, I mean it quite literally. I spent conscious and unconscious hours worried that if I didn't do something or think something or research something or talk to someone about something, I'd miss the chance to fix Sophie. In other words, I would miss figuring things out. I remember with an almost PTSD-like intensity the cover of a Time Magazine article about child development and the brain, how at age three, a window shut on language. I believe that has been debunked since then as we've discovered the brain's capacity for amazing feats of regeneration, but the sound of that window slamming haunted me for years. I spent a lot of time trying to figure things out before that window slammed and well afterward.

When I sat down to write this morning, I looked at the collection you see in the photo and realized that I'd made a sort of shrine, and that gazing often blankly at these things helps me to center myself and channel all the energies I have in me and outside of me to create and to write. There's a card there at the back that a blogger friend who's become one of my best friends sent me. There's a little jade statue of the Buddha, and a tiny tin of holy dirt from a shrine in New Mexico that my friend Tanya brought me. There's a bit of driftwood from the beach in Victoria where I spent a week last year, a week given to me by Heather McHugh and her organization Caregifted. There's a little house behind it with the words A house without books is like a room without windows. These objects sit on a box of postcards from Penguin that replicate one hundred book covers, and in front is a glass coaster that my mother gave me years ago with a sweet saying. I always feel joy and content when I write, to tell you the truth, and that's true for both online and off-line writing, but particularly so when I sit in a sort of reverence and allow it to just happen. I hesitate to use the word channeling for all its over-used weight, but I'm not sure what else to call the release of fingers on keys, the rush of language and words falling into place. I'm not figuring things out, though, and it's not about me.

I get a lot of emails and telephone calls from people with little children who are new on the path of disability or epilepsy. I'm always struck by their bravery and by their sense of urgency as much as by their anguish. I recognize all of their emotions because I've had them or continue to have them. When I cast my memory back to my own early days with Sophie, I remember the visceral details of trying to figure things out, but I don't remember much of who I was or how it happened, or even how I did it. I want to say, sometimes, you won't figure things out, but even twenty years later, I don't have the wisdom -- or presumption -- to do so.

If I could, I'd tell them how not to figure things out, but I haven't figured that out either, other than to treat with reverence and love this place inside of me that persists in opening to possibility.

Philippe Petit

It's blurry, but that's a photo of Philippe Petit signing a photo of himself (that Oliver had printed out on the computer earlier): To Oliver.  Last night, I took him downtown to our central library to hear the man read from his new book, Creativity, the Perfect Crime. Here's an excerpt from the book:

My attitude as an artist grew out of the realization I'd arrived at from an early age: that my intellectual engagement, my imaginative freedom, had a price, that of the forbidden. Whatever I decided to do, it was not allowed! "Creativity is illegal!" became my byword.

The creator must be an outlaw.

Not a criminal outlaw, but rather a poet who cultivates intellectual rebellion. The difference between a bank job and an illegal high-wire walk is paramount: the aerial crossing does not steal anything; if offers an ephemeral gift, one that delights and inspires.

Despite my outlaw approach -- or because of it -- a network of personal creative principles imperceptibly emerged. Lawlessness doesn't mean lack of method: in fact, the outlaw I became needed method all the more, because I was swimming alone to the island of my dreams. 

 

 

I can't express how thrilling it was for me to see this strange and funny man come on the stage. He wore an orange pullover and khaki pants tucked into weird leather boots. He's of medium height and quite muscular for his age, and if you've seen any of the wonderful documentary Man on Wire, you'd recognize his quirky mannerisms and mischievous smile. In fact, he did less reading from his fascinating new book, and more explaining in a thick French accent and demonstrating his own creative processes. He involved the very small audience throughout the performance, asking us to come up with interesting uses for a plastic fork that we were given when we walked in, and even doing some sleight of hand magic tricks. He was utterly charming and subversive in the best way. 

I did find it hard not to stare at him, consumed by the thought this man walked on a wire between the World Trade Center towers. Don't ask me why this has always thrilled me to the point of obsession. I'm not a risk taker. I hate roller coasters and heights make my knees quiver. There's a tightrope walker and trapeze artist in one of my favorite movies, Wim Wenders' Wings of Desire. I often wear a necklace with a tiny medallion on it of a tightrope walker holding that long balance stick. Come to think of it, it might be Petit between the Towers. I guess I could make metaphor with my obsession -- why it resonates so much with me.  I've done that plenty of times even here on this blog. 

The funambulist is a person who walks the wire or dances on the wire, messing with boundaries, balancing dark and light, acknowledging the fine line between them. As the mother of a child with such severe disabilities, who is so utterly dependent upon me, I am a funambulist of sorts, alone and agile. 

But enough of that.

Oliver and I were smitten by Philippe Petit and grateful to live in such a fine city where we had the opportunity to see this great artist in such a small and intimate space, for free. 

He's legit, Oliver declared after meeting Petit and shaking his hand. When we walked out into the softly lit evening city, we felt enchanted.