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?!

Making Pies

My podcast partner, Jason Lehmbeck suggested that I put up an end of year post, a Who Lives Like This?! list of our favorite caregiver podcasts, and I said, Jason! I'm busy! Taking care of Sophie and making cakes! Jason reminded me of the fabulous song by Patti Griffin called Making Pies which is now running through my head -- as I make cakes for the masses and care for Sophie. I think you, dear Reader, should listen while you read:



The past six months have been incredible for the Who Lives Like This?! podcast -- we've talked to so many lovely and amazing mothers and fathers of children and young adults with disabilities. We've talked to those in support positions, and we have several terrific guests coming up in the new year -- siblings, mothers, fathers, bakers, pie makers, business tycoons -- well -- not business tycoons. We'd love to have a caregiver on the show who's also a business tycoon, though, so if you know someone, let us know. Pie-baking, as you might guess, doesn't pay all the bills!

So here goes on a list of caregiver podcasts that we love.

Ours truly
www.wholiveslikethispodcast.com

Lomah
www.lomah.org

Mama, Build Your Empire
https://mamabuildyourempire.podbean.com

Mama Bear
www.mapunknown.org

Learning Not To Swear
www.tedlyde.libsyn.com

The Accessible Stall Podcast
www.theaccessiblestall.com

Reader, please leave a comment here or elsewhere if you know of a podcast that might appeal to this mighty group of caregivers. Share the post, too, if you are so inclined.

Now, I've got to go make pies.

You could cry or die 
Or just make pies all day 
I'm making pies 
Making pies
Making pies 
Making pies

Making Art, Making Cake, Making Love

Let the sunshine in
Photographer: Carl Jackson 

I'm excited to tell you that I have three pieces in the Michigan Quarterly Review. It's a special themed issue titled "Caregiving." I'm in pretty darn august company, including Suzanne Edison and Heather Kirn Lanier. The review has categorized my work as "poetry," but between you and me, they are really prose poems or fragments that appear in my larger manuscript.  You can order a paper copy or download a PDF for $10. There's some amazing stuff in there, and let's hear it for supporting the work and art of caregivers. I recently sent about 180 pages to an editor. I have about 3/4 of the first draft revised and am determined to get the last quarter done by the end of the month. The publication in Michigan Quarterly Review is such an honor —I've probably sent out ten things over the last couple of years and have had all rejections, so this gives me that extra kick in the ass that I need.

Maybe I'll have a book published before I turn eighty but probably not before the Disunited States turns from plutocracy to autocracy.

I guess we have to just keep doing the work. Making art, making cake, making love.

In other news, my fellow co-host and friend Jason Lehmbeck and I had the most profound discussion with two women on the Who Lives Like This?! podcast. Jennifer Siedman and Blyth Taylor Lord spoke to us about their own families and lives, about palliative care, bereavement and the remarkable organization Courageous Parents Network.  Even if you aren't a caregiver, you must listen to it. I beg you to listen to it. Please share the link, too. Remember: we're making art, making cake, making love.

Here's the link.

What are you up to, Reader?

MQR 57|4 Fall 2018

It's a Health Insurance Miracle!

When my podcast partner, Jason Lehmbeck, heard about what happened last week with The Blue Shield of California first denying and then mysteriously covering Sophie's infusions of IVIG, he said, "It's an insurance miracle!" and somehow that one remark not only sent me into a gale of giggles but has sustained me ever since. That's the beauty of our community and of my partner -- he gets me, I get him and we get all of ya'll.

We recorded a catch-up podcast last week and hope that if you haven't yet checked out Who Lives Like This?! you will today. Jason and I didn't have a guest on but rather caught each other and our listeners up on what's been going down in our lives. We talked about our kids and highlighted The Siblings. We also hashed out which episodes had most affected us or that stuck out for us personally. For me it was the discussion with Josh Fyman, a father of a severely disabled young girl and his family's decision to place her in a residential setting instead of caring for her at home. This is a topic that has always made me squirm in discomfort. I have strong opinions, as you know, and I thought I felt pretty unequivocally about this subject. What happened, over the course of the podcast and then for weeks afterward, was a kind of mind and heart opening. I don't know how to explain it in any other way, but I do know that Josh and Jason and I talked about what seems like an impossible thing to talk about, and my heart and my mind were opened. That's all I'll say about that, but I encourage you to listen to the podcast.



If you're so inclined, please consider supporting our podcast through the Patreon link at the top of the webpage. We are building a community and need the support! And if YOU'd like to be a guest or hear about a certain topic or from a certain person, please let us know! You can leave a comment here or on the Facebook page or blog.

Art and Chaos

Somewhere over the western continental United States
2018

And we are put on earth a little space,

That we may learn to bear the beams of love, 

William Blake

When I meditate and lose my breath and go to thoughts they are like tendrils in some dark soup, like fish swimming by, my hook vain. I make them clouds to float, to find my breath again. My thoughts, my brain. I flew back to Los Angeles from Spokane. I looked out the window to see what appeared to be an ordered universe -- neat squares, rectangles and the occasional parallelogram colored in rich browns and greens with wispy clouds floating above. It might have been a brain, thoughts packed tight. In service to breath, become clouds. And then right there, a branch cutting through, tendrils, neurons, synapses, whatever. Threaded through and broken. It's always about the brain, isn't it? Sophie's brain and mine. The word riven. The word wisp. 




Have you been listening to our podcast, dear Reader? This week's episode, Art and Chaos is with the brilliant artist Mimi Feldman. She is the mother of a young man who has schizophrenia. I think it is one of the most interesting conversations that I've had in my life. I feel humbled by her experiences and enriched by her story. I believe fervently that people's voices -- the telling of story -- connects us to one another.

Read about and listen to Mimi's story here.  I promise you will leave enriched beyond your imaginings.


If you have been listening to Who Lives Like This?!, what do you think? My partner Jason and I are having so much fun doing this, but our intention is to also build a real community. We need your help. We're not making money, but we'd like to continue to build the podcast and the community and improve the quality and -- well -- continue doing it. If you're so inclined, please consider supporting us through Patreon. You can pledge as little as $1 a month!

Here's the link to Patreon.

Henry and Oliver took me out to dinner for my birthday -- Henry on the last night in Spokane where I left him to begin his second year at Gonzaga, and Oliver here in Los Angeles, last night.

I know ya'll like my sons almost as much as I do, so here are a couple of pics:

A Sense of Humor

My Dad with Henry and my niece Mary
2006 and 2017

Humor keeps us sane. I’m in Hilton Head for the annual family “vacation.” It’s a whole lot of “fun” and a whole lot of family. Need I say more?

Speaking of humor, don’t forget to listen to this week’s episode of Who Lives Like This?! Jason and I have a great discussion with Sandra Stein about humor in caregiving — how to nurture it and how it can help in even the most challenging situations. Here’s the link

https://www.wholiveslikethispodcast.com/single-post/2018/07/31/Sandra-Stein

We Will All Take Care of Us

A new podcast is up at Who Lives Like This?! and I think you'll find it intense and interesting. Jason and I talk with Josh Fyman whose daughter was diagnosed with Aicardi Syndrome when she was an infant. Aicardi is a seizure syndrome with a wide range of severity, and Josh's daughter is among the most severe. In and out of hospitals for much of her short life, often with life-threatening illness, she only began to maintain stability and health when the Fyman's decided to place her in a residential home.  Anyone who is a caregiver to a child with severe disabilities has thought about how to best care for their child, and the prevailing culture informs us that living at home is what is best for that child. What if it's not, though? What if the situation is dire enough that one is forced to make a wrenching decision to live apart from one's child? Josh speaks honestly and eloquently about his own family's decision. My preconceived beliefs about this subject were blown wide open, as was my heart.

Read more and get the link to the podcast here

It's a difficult subject -- maybe even the most difficult subject outside of death that we caregivers wrestle with nearly every day. It never goes away, actually, yet morphs into truly existential questions. Who will take care of her when I can't do it any longer? Who will take care of her when I die? How will I do this and for how long can I do this? Will I be able to afford to take care of her for the rest of her life and mine and what are the costs?

Here's the bottom line. We live in a country -- a world -- that pays short shrift to the lives of persons with disabilities. Where we live, even down to the actual state in this wealthy, enlightened country, determines the level of quality of our healthcare. We have laws to prevent discrimination against the disabled and to ensure their freedoms and dignity, but we are forced to be vigilant in defending those laws in an increasingly transactional world.

Anyone can acquire a disability or become disabled at any point in a life. Recognizing this is an important step in removing the fear of the Other. You know what I'm talking about.

What can you do to help? You can participate in our political system by writing and calling your representatives and holding them accountable to their disabled constituents, especially when leaders in the disability community give you the heads up. You can pay attention. You can reach out to disabled persons in your own communities, get to know them and include them.

You can listen to these podcasts and stories, help support caregivers' efforts to make the lives of their children and families better. You can watch this astounding video that smacks of hard truths.

Writing, Respite and Denali

I'm still here in beautiful rural Washington. There's not much to do but relax and listen to the birds, putter around the beautiful house, wander outside and chat with the goats, read novels (Tommy Orange's There, There and Ottessa Moshfegh's Eileen), read some poetry (Marie Howe's Magdalene), eat a plum, eat a peach, let a corner of a chocolate bar melt in my mouth, suck on a Tootsie Pop and gaze at the Bird Photographer.

I haven't written much, but I've arranged and re-arranged my hundreds of pages into a sort of order. It took hours and hours to do that much, but a structure is finally, literally, at the tip of my fingers. My plan is to finish up in the next day or so and then, when I get home, re-type the whole lot and send to the editor as a rough -- extremely rough -- draft.

The Pacific Northwest in the summer is perfection. It was here -- or up in Victoria -- where I spent a week by myself only four years ago, a recipient of the magnificent Heather McHugh's organization, Caregifted. That week changed my life and opened me to the possibility of and hope for more respite from the life of caregiving that, while enormously rewarding and filled with grace, has also drained me of myself or the essence that keeps me vital. I realized then how important it was to seek respite in whatever way I could, to open myself up to the possibility of replenishment and to work just as hard to get that as I do to take care of my daughter. While I am aware of the enormous privileges I've been granted that others just do not have, I also remember the nearly twenty years without significant respite. I remember what it was like to have no hope for it.

We caregivers must get back to ourselves as if our life depended on it because it does.

photographer: Carl Jackson

Listen to the latest Who Lives Like This podcast -- a rousing discussion of nurturing the self with Paige Figi, the director of Coalition for Access Now and the mother of Charlotte of the famous Charlotte's Web cannabis oil. Jason and I interviewed Paige just a week before she climbed Denali, the highest peak in North America. Here's the link:

Who Lives Like This?!

Yeah. I know. Not all of us will climb Denali, even if we desired to do so. Yet, still, there's joy to be had no matter how you choose to find yourself.

As my friend, writer Chris Rice said the other day, Your book is your Denali.


Onward.

Who Lives Like This?! Podcast (with no "f*^ks" given)

Ted Lyde

Something about the word fuck and Facebook and algorithms and something something something, but we had to change the name of the podcast to Who Lives Like This?!! which is, actually, the original question screamed by young Oliver back in the day. Since we took the word fuck out of the title, though, our Facebook visits have multiplied considerably, so I guess we've succumbed to hive mind/Big Brother Facebook or whatever epithets you want to hurl at social media. Social media. It can be immensely good, you know, connecting those who ordinarily couldn't connect. So spare me how much you hate Facebook -- it's provided an immense service to many people in the disability world.

Just don't say fuck.

This week's podcast is a conversation with comedian Ted Lyde. Ted is hilarious. Some of you might remember him recording a conversation with me on his own podcast which is, ironically, called Learning Not to Swear.  He's a sweet man, too, and a devoted father to his two children, one of whom has special healthcare needs. Fathers of children with disabilities are so rarely applauded or even discussed, but Jason and I intend to talk to many of them. Ted spoke of his devotion to his family and to what it means to sacrifice one's personal needs and or dreams. The conversation was so stimulating for me because it was two fathers talking. I was surprised -- to tell you the truth -- surprised by their candor and the ease they had in expressing their vulnerabilities. I'll wager that caregiving in general is the great equalizer as far as breaking you down and forcing you to come to terms with who you are and who you want to be.

It's good stuff, as the young ones say. Or maybe that's the old ones.

Please listen to the podcast, subscribe to it, read our blog, check out the growing list of resources, share the info, review us on iTunes and do your thing on social media. We're not making money (at least, yet) with this podcast, but we are building a community. We're talking, crying and laughing together. We need you to join us, whether you have a child with disability or not. You will probably become a caregiver one day or be cared for yourself --

Here's the link to the website. From there you can access the podcast either through iTunes or SoundCloud.

Thank you for helping us to share Who Lives Like This?!

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

REAL with Diane McDaniel

Passion is the bridge that takes you from pain to change

Frida Kahlo

Last week, I sat in Diane McDaniel's backyard studio and had a wonderful conversation for her really interesting podcast, REAL. I love that women everywhere are working and expressing themselves in novel ways, and I am honored to support those like Diane who are digging deep into life and helping to share stories.

Here's the link to the episode Elizabeth Aquino Who Am I Without All Of This  on a few different distributors. Listen to the other episodes as well because you'll find so much that is interesting, stimulating, alive and REAL.

• iTunes: https://itunes.apple.com/us/podcast/real-with-diane-mcdaniel/id1218912570?mt=2#episodeGuid=https%3A%2F%2Frealcancer.blubrry.com%2F%3Fp%3D124

• Google Play: https://play.google.com/music/m/Dazwqyyyzu7yrfefb4j74i4djkq?t=Elizabeth_Aquino_Who_Am_I_Without_All_of_This_-_REAL_with_Diane_McDaniel-REAL_with_Diane_McDaniel

• Website: https://content.blubrry.com/realcancer/Elizabeth_Aquino_Who_Am_I_Without_All_of_This_.mp3

I'm a Tightrope Walker and a Non-Stop Talker

The other day -- actually the same day that the AHCA (Ass Hole Care Act) bill passed through the House, I had the privilege of talking to Abi Wurdeman on her SpareMin podcast. Abi had read my blog and contacted me to do one of these short and casual podcasts for Mother's Day week. She is a writer and podcaster living in Los Angeles who hosts interviews on SpareMin that center around human rights, feminism and diversity representation in the media.

Also a comedy writer, Abi was incredibly tolerant of my chattiness that day. Good Lord. When I listened to the podcast, I realized that my intense anger over the AHCA bill manifested as near babbling over the issues that I care about most. OK. Not near babbling -- babbling.

In any case, it was a fun interview that you might want to listen to if you have a spare minute or fifteen or need a diversion from all the crap hitting the fan today. Abi's got some other ones on there that are great listening, too.


""

Learning Not to Swear (Do I Really Sound Like This?)

Hey ya'll! This really cool guy, Ted Lyde, asked me to come and have a conversation with him. This morning we talked for over an hour about all sorts of things.

You can listen to it at this link.