Have You Listened to Clio Yet?

Just in case you haven't, here's the link to our latest podcast. For new readers, my friend and co-host Jason Lehmbeck and I have a podcast for caregivers. Actually, it's a podcast for caregivers and the rest of humanity. We interview siblings, too, and the one with Clio Chazan-Gabbard, the daughter of author Chris Gabbard, will, I think, enlighten you no matter what you're doing in your life.

She's a very special young woman with profound insight and heart-piercing honesty.

Listen here.

"Grief as Praise" on Who Lives Like This?!

Heather Barnes Jackson, Me and Allison Benavides

I hope ya'll will listen to today's podcast. We interview Heather Barnes Jackson, a mother, advocate and the CEO of Realm of Caring. She is one of the most beautiful women I've ever met -- brilliant, funny, warm and earthy. She's quite literally helped tens of thousands of children and young people -- even saved their lives.

I've been thinking so much of what she describes as a "sick obsession." It's suffering and grief, but her insight is not just provocative but deeply healing, at least to me. As I listen to the podcast a couple of weeks after we originally recorded it, I'm struck, again, by the astounding people I've met over the last twenty-four years. Grief as praise, indeed.

Listen to the podcast here or anywhere you listen to podcasts. You can also read the accompanying blog post on our website: www.wholiveslikethispodcast.com

Deli Healthcare and My 911 List

I took my baby boy Oliver to an appointment today at Kaiser Permanente. Most of you probably already know that this is an HMO and that Oliver is not a baby. He will, in fact, be 18 years old in May. Good god almighty. We have not been in an HMO in twenty-five years, but this year I downgraded his and my health insurance policies because I just could not afford another 35% increase in premium for the PPO that we were on with Sophie. Sophie stays on her Cadillac plan with MediCal as a secondary policy. 

Anyway.

Kaiser Permanente proved to be exceptionally -- dare I say -- efficient. We really, really liked the doctor we "picked." It was amazing, honestly, how easily everything worked -- a one-stop shop. We visited the doctor, moved to another floor and barely waited to get blood work and then another to pick up a prescription. We were out of there in less than two hours, and the co-pays were minimal. Honestly, if Sophie didn't require such specialized care, I'd be all over Kaiser for her care, too. I've always been terrified of managed care, but let's face it. We're all managed every single moment by the Powers That Be. When we went to the lab for bloodwork, we had to get a ticket with a number on it, one of those little scraps that you get in the deli department at the grocery store. That was maybe the only moment where I felt annoyed, but I let it go. So, after just one visit, I'm going to recommend Kaiser Permanente for routine healthcare -- my god, in comparison to literally ALL the other places we've sought healthcare (UCLA, NYU, Columbia, USC, Children's and Cedars-Sinai), it was the best experience. I'll keep you posted on my own physician visit which is coming up soon.

Now, let's talk about 911. We just dropped another Who Lives Like This?! podcast. This week, Jason and I had Dr. Rita Eichenstein on the show. She is a neuropsychologist and the author of a really great book. Not What I Expected: Help and Hope for Parents of Aytpical Children. Even if you aren't the parent of an "atypical" child (and this category includes children with mental health disorders like anxiety and depression, as well as diagnoses of ADHD), I think you'll find a lot of value in our discussion. What really stood out for me was some advice she gave to those parents with newly diagnosed children. Among many helpful tips, she suggested compiling a 911 list of people you can call when you need help and support. After listing these people, she suggests calling each of them and asking whether they'd be willing to be on your 911 list. I know some of you are thinking, well, duh, of course you'd already know who to call or who wouldn't say yes to being on the 911 call list? I'm here to tell you that, at least for me, it's hard to call people, to ask for help, to vent, to cry, to share grief and exhaustion. Especially when it's done, over and over. I think it would have been tremendously helpful for me to have made such a list early on in The Troubles and communicated what I was doing with those people I trusted to be on it. Does that make sense? I feel guilty when I call my friends with my latest woes, especially regarding caregiving. I actually don't even do it that much anymore and feel isolated (of my own making, I know) as a result. I do see a therapist regularly, and that is enormously helpful, but it'd be great knowing that certain friends had taken on the responsibility of being on call for me, beforehand. I know for a fact that many of us struggle with asking for help. This seems like a simple -- yet almost formal -- way to connect with others and to "allow" them or give them the opportunity to help us. 

What do you think?

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?!