The World We Live In

The World I Live In

I have refused to live
locked in the orderly house of
      reasons and proofs.
The world I live in and believe in
is wider than that. And anyway,
       what's wrong with Maybe?


You wouldn't believe what once or
twice I have seen. I'll just
         tell you this:
only if there are angels in your head will you
         ever, possibly, see one.

Mary Oliver, from Devotions, The Selected Poems of Mary Oliver







What's happening here?

Sophie's getting a 48-hour in-home video EEG monitoring. We hope that the IVIG infusions she's been receiving monthly are working to resolve this hideous syndrome. Sophie is strong. I would say that I am, but sometimes I'm not. The tech who hooked Sophie up was the nicest guy. We listened to jazz and talked books. Saint Mirtha is here, making soup. The IVIG nurse was here this morning and had to stick Sophie four times because she's dehydrated. She ordered hydration and that was delivered. I am so grateful for Sophie's life and our strength. I'm grateful for health insurance that allows this in-home treatment. I'm grateful for those legislators that continue to fight the piece of shit that runs our country and threatens to take away life-saving provisions of the ACA that allow Sophie to get healthcare and us to avoid bankruptcy and feel some measure of relief. I know it's not perfect, but it's a grand step in the right direction. Those who think otherwise are welcome to live the life of a person with epilepsy and then the life of a caregiver. I'll train you in both with mastery (meaning you'll forget about supporting that piece of shit if you still do) estimated to take about one month. Guaranteed. If you're not willing, shut up and listen to us. We know how to fight and what to fight for because we have to, all the time.

#healthcareforall
#littlelobbyists
#epilepyawareness
#seizuressuck
#caregiverlife
#wholiveslikethis

Self Subversion

My uncle has come to stay with us for a while to further recover from a head injury he suffered several weeks ago after a fall. He's been in a rehab facility in the deep dark valley, and yesterday I went to pick him up. I'd like to say that it all went smoothly, that the medical system worked well, that all family members participated, that I never once lost my cool or spoke in the tone of voice I have acquired, somehow, despite myself, that lies somewhere between Stepford Caregiver cheerful and a dripping condescension. I'd like to say that getting lost in the facility and finding myself for a few minutes wandering through several rooms filled with disabled adults who milled about muttering or sat staring and nodding was at the very least, familiar.  Except that the medical system did not work well, all family members have not participated, I lost my cool a couple of times, and my tone of voice didn't just drip but splattered with irritation. And my wander through the halls of adult institutionalization resulted in a bout of sadness about nine hours later that I told Carl was something that just happens, sometimes, this wave of emotion that is best dealt with by assuming a kind of dead man's float, the better to not be drowned. The morning light brought so much relief it felt nearly funny, and I made blueberry muffins that I ate with the three men (one old, one in the middle and one young), along with pancetta that I scrambled with eggs. I cut up two blood oranges, and we ripped the flesh from the rind.

As the hours tick by and the caregiving continues, I think of self-regard, of self-care, of the illusion of the self.


Question: What do you have to look out for? 
Answer: Resentment. 


Resentment. If I could give it a shape, it'd be the infinity symbol or something impossible. If I could give it a color,  I think of something burnt red. Like the gray of embers with bursts of light. The word implacable. Women. Keeping our mouths shut. Resentment is not to be mistaken for anger which is the open mouth or red lips drawn into a smile.

It's just impossible

Seizure days. ESES days. How do we get through them? Still, I have no idea. Still. Still! What would it look like to get through them? Is there some sort of chant for it, a manifestation? How does Buddhism work when your daughter has a bad seizure day?  It's just impossible, my friend Jody once said about her own situation, and I think about that often. It's just impossible. I think about Paloma and Calvin and Michael and Robert and Zaki and Charlotte and FlyBoy and Sophia and William and Emily and -- well -- all of them. It's impossible.

Listen. We had Dr. Bonni Goldstein on the Who Lives Like This?! podcast this week! She educates everyone about the endocannabinoid system and how cannabis medicine can right the balance for so many disorders. She talks about caregiving for caregivers, but her advice is really for anyone who wants to learn about how imbalances in the endocannabinoid system can manifest as disease or insomnia or anxiety or depression, etc. She has advice and suggestions. Check it out here. You can listen right from the blog post or from iTunes directly.

Vote, Baby

#healthcarevoter
#throwthemout
#resist
#nafacamo

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?!

Elena Hung and Little Lobbyists on WhoTF Lives Like This?! Podcast

That's Elena Hung and her young daughter Xiomara. They are powerful women, and you have the chance to hear all about the work they are doing to improve the lives of children with complex medical needs. You'll also hear about how Elena does what she does -- she's an immigration lawyer, a mother, a caregiver and the founder of Little Lobbyists.

Please listen to our podcast wherever you listen to podcasts or click on the button on the accompanying blog by going here:

WhoTF Lives Like This?!

Check back on Mondays for new podcasts -- Jason and I have so many to share with you! I hope that you'll share the links with others, too.