We Can Do Hard Things, Friday 4/3/20

From off the wide world webs

I don't know about you, Reader, but I find myself cycling through a whole lot of emotions each day beginning at about 5 am and continuing throughout the day, often capped off with a kind of easy dissociation and ending when I go to sleep (always untroubled, this is a gift I know). I woke this morning in a financial panic with apocalyptic scenarios that would make envious any thriller screenwriter, and I realized only after breathing through all of it that the panic comes from privilege -- the privilege of having everything that I need right now. Plus, the sun came up. So there's the FEAR ZONE, THE LEARNING ZONE and THE GROWTH ZONE.

Do you see how much one can grow, even in the darkest hours before dawn?

Today is a beautiful one in southern California. I've taught my students and am now ready for what we used to call "Spring Break." I have no idea what I'll be "doing" next week but somewhere in my tiny little mother mind™ I might sit down and pull out the GDB and get writing.

Oliver told me that during a zoom conference with his boss at the U of A (he works in the bookstore), they learned that the university is operating soon at a massive deficit and that many, many people will be laid off, including faculty. Cue a FEAR response (anger at why would they say these things in a meeting?), but instead I'm going to LEARN, and I'm going to take Oliver along. I recognize that the university, like all businesses and people, is trying to do its best. I ask him whether this was rumor that the boss was spreading or whether there's validity to it. I acknowledge that this whole thing is scary as shit but we can't control this part of it. 

T

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G

It's super scary and unnerving, I share with Oliver, but right now, we're fine. We're making sandwiches, and I've got a job. You have an internship lined up for the summer that is still going to happen. We're all going to get through this but not unchanged.

Reader, tell me how you're experiencing fear, learning and growth.

Stop Kumbayaing and WAKE UP!

Dear Representative or Senator,

As a constituent who cares deeply about issues affecting people with intellectual and developmental disabilities (I/DD) like my daughter who has refractory epilepsy and severe developmental disabilities, I have concerns about the Tax Cuts and Jobs Act in its current form because of its impact on services for people with I/DD.

I cannot support the tax reform legislation in its current form because:
- The changes proposed to the charitable tax deduction reduce the ability of nonprofit disability service providers to fund important services for people with intellectual and developmental disabilities (I/DD)
- As the only other federal support for Medicaid long term services and supports, the House passed legislation removing the medical expense deduction could put significant strain on the Medicaid program that serves people with I/DD
- The changes to the unrelated business income tax (UBIT) impact the ability of nonprofit providers and their associations to maintain limited but important revenues
- The changes to state and local taxes would have a negative impact on certain states that obtain significant funding from these taxes for services for people with I/DD
- The House legislation's elimination of tax breaks on bond financing could significantly undermine the financing for affordable housing for people with I/DD
- The addition of $1.5 trillion to the national debt may be used to justify future cuts in Medicaid, Medicare, or Social Security which are the main federal programs that support people with intellectual and developmental disabilities.

As your office considers how to restructure our tax system, I wish to share with you tax reform principles by the American Network of Community Options and Resources (ANCOR), the national trade association for disability service providers. These principles seek to ensure the stability of services and supports that people with disabilities rely on to participate fully in society. I hope you will consider these principles and the well-being of people with intellectual and developmental disabilities as legislative tax discussions advance.

ANCOR Tax Reform Principles
1. Any process that includes changes to Medicaid should be accomplished through a process that affords sufficient opportunity for legislators, advocates, and constituents to review and provide feedback on the proposal and legislative language prior to passage.
2. Individual or corporate tax cuts or expenditures must not be paid for by cuts to Medicaid, Medicare, Social Security, or other mandatory or discretionary programs that promote independence, inclusion, and community living for people with disabilities.
3. Tax reform should not decrease revenue to an extent that revenue is insufficient to continue to fund the programs and services and supports for people with disabilities at current levels or above.
4. The charitable deduction should be maintained and improved for the non-profit sector which provides the majority of services and supports for people with disabilities.
5. Unrelated business income tax should be held harmless to protect the vital role of nonprofits and associations in the disability services sector.

I look forward to working with you to strengthen community services for people with intellectual and developmental disabilities - please reach out to me if you have any questions.

Sincerely,

Elizabeth Aquino


#RESIST

Here's a link for you to send your own letter.

Here's where you can call with a script. Do it. I beg you.

The Congressional Switchboard can help you identify your members of Congress and will connect you directly to their office - dial it at 202.224.3121 or 202.224.3091 (TTY). A short script you can use is: "I am a constituent who cares deeply about issues affecting people with disabilities. If you do not already oppose the tax reform bill coming for a vote today, please do so because it has provisions that would harm services for people with disabilities. Thank you for your hard work answering the phones."

Alchemy and Anxiety

I don't know about you, but I feel so weird these days, so out of sorts, so self-conscious and aware and filled with adrenaline and disgust and anger and -- should I go on? I miss blogging, too. I miss marking my days here and the casual way I'd throw out some thoughts and observations, a bit of poetry, a rant or two. I'm not tired of blogging or of blogs, either. I am preoccupied. I am so afraid of normalizing that POS running the country, the sycophants that support him, those that still maintain we must come together. Come together, my ass. I'm as overwhelmed as every other woman by the toppling of the patriarchy, too. When is the head dude, though, the Sexual Predator in Chief, going to get his due?






I'm baking a lot of cakes. I baked this one:

Coconut Cake with Coconut Buttercream

and I made five of these:

Apple Toffee Crunch Cake with Cinnamon Buttercream

I made about a million of these:

yeast dough rolled in cinnamon sugar

It came out like this:

Cinnamon Pull-Apart Bread with Caramel Glaze

Baking, unfortunately, does not alleviate the stress of the Repubs screwing us, over and over, now with their new tax plan which is really another version of their healthcare plan, which basically reinforces the direction the Disunited States of America is going which is a plutocracy. I want to say f*^k all of them, but I tire of cursing.







I also made the most killer cinnamon buttercream.

Butter, sugar, egg whites, cinnamon

Honestly, that stuff is nearly sexual. A silky sweet meringue that takes butter and transforms into something that melts on the tip of your tongue, just a trace.

Alchemy.



I had my first paid gig at The Los Angeles Times on Saturday. Here's the link.


#gigeconomybaby

Tonglen

Because there's this country, richer beyond any yet bankrupt in all the ways that count --

Because there's Syria --

Because it's the anniversary of Sandy Hook --

Because our planet is being plundered --

Because my own heart is bitter --






Tonglen:

Breathing in the suffering of the world and others, breathing out love and compassion. Taking on the world's suffering seems ridiculous, except that it's not.

I am tempted to take care of my own, to tend my own garden, to go within as without seems dark. The hammering next door, the squirrels' chatter over a tangerine, the way the sun slanted through the window this morning.

The sense of the country going to pot. Our country, the wretched led by the morally bankrupt. The impossibility for me of not looking out, not being engaged and informed. The impossibility for me of only looking within. Illusion.

My reliance on meditation, specifically tonglen, forgotten and remembered. Relief.

Acknowledging misery -- the world's and my own -- is just that. Acknowledgement. There is peace in acknowledgement. Breathing out love and compassion.

Love is a verb.

Stemming the Tide With Lapins

Channel Islands, Pacific Ocean, Planet Earth

to Moye

I don't know about ya'll, but there's a distinct panic in the air this morning. Out here on the edge of the continent, it's a combination of the goings-on in England (how quickly new words like Brexit appear), Drumpf's latest grotesque shenanigans, the fires raging in Kern County, the rumblings about The Big One striking Los Angeles and causing widespread catastrophe, and the fact that it's nearly impossible with the 24/7 news cycle not to be aware, however inadequately, of all the world's troubles. Oh, and the irony of blogging is not lost on me.

This morning I lay in bed stemming panic about everything in general and some things in particular. I tried to be mindful of this -- the prick of tears, the roiling in the stomach, the paradox of feeling both charged and anxious and paralyzed. Sometimes it takes literal will to gain perspective, a sort of coaxing now, now, come on, come on. I thought of the tide and how it creeps up on the shore, creeps up and retreats, creeps up a tiny bit more and retreats, again and again and so on. That's what it felt like this morning, my bed a boat, the usual boat, the rocking and drifting but the tide was pushing me in not letting me out. I felt like I might be swallowed.

I remember seeing an old black and white Super-8 movie that my father took in the sixties. I was not even five years old, we were at the beach -- somewhere on Long Island -- and I had on only the bottoms of a bikini, my small, thin body brown as a nut. I was skipping into and out of the tide as it moved in and out, and I don't know if it was the combination of the silence broken only by the tick of the film advancing and my innocent joy, or the wonder that something as ephemeral as childhood could be captured forever, but I was mesmerized and moved by the intimacy of my dancing with the tide. I am struck by that memory today and by how I seem to have lost that ability to dance or, at least, the ability to do it so easily.

If you read The Writer's Almanac, you might have seen the wonderful yet freaky story of today being the anniversary of an outbreak of dancing plague or dancing mania that first appeared in Aachen, Germany in 1374. Known as St. Vitus' Dance, it spread across the European continent, and people danced for days and even months in a sort of mass hysteria to, for some, their literal deaths. Good Lord. I've known about St. Vitus Dance for many years because epileptics were sometimes diagnosed with it, but I can't help today to wonder if we're all involved in something similar. We need a visit to the Bunny Planet, my brilliant friend Moye texted me this morning, referring to a sweet book by Rosemary Wells that we read to our children when they were little. In the story, after a particularly bad day where everything is going wrong, a young rabbit girl gets a visit from the Bunny Queen.

Far beyond the moon and stars, Twenty light-years south of Mars, 
Spins the gentle Bunny Planet 
And the Bunny Queen is Janet.
"Here's the day that should have been"

and so on to the happy ending of sun-warmed summer tomato soup and love, always love.

I know this post is going on, and you're probably wondering what the hell I'm talking about, but Moye sent this text to me next which we both agreed was an act of stunning synchronicity:

It is the first duty of a flagging spirit to see renewal in the latitudes of whimsy. I, for one, dream on beyond the five planets to a world without wickedness; verdant, mild, and populated by amiable lapins."

Benjamin Franklin, letter to his nephew, 1771.

 In case some of you don't know, lapin is the French word for rabbit or bunnies.

So there you go -- my willful stemming the tide of panic.

Now, now, come on, come on.

Mosh Pit

Do you want to hear the good news first or last? It's not actually news but more of a rehash. SOS. Save Our Ship and Same Old Shit. I got a Christmas greeting card from our new health insurer. It was a snow globe with a cheerful winter scene inside. Despite coverage not beginning until the first of the year, I suppose Anthem Blue Shield is trying to butter me up. You know -- all that thank you for entrusting us to insure your good health and looking forward to a wonderful relationship in the new year. Wouldn't it be awesome if their season's greetings included Happy Hellidays and Looking Forward to Ripping You a New One in 2016! I'm thinking about printing the e-card out and using it for target practice -- oh, wait -- I don't own a gun and have already refused to even acknowledge those who believe it's their right or need to carry one. Maybe, instead, I'll use the card to practice spitting, or maybe blowing marijuana smoke rings. Wait -- I haven't really spit on anything or anyone since my sister and I fought over Parcheesi back in the mid-70s, and I don't smoke marijuana despite my fervent belief in its medicinal powers. May the new year knock some sense into our legislators, persuade them that accepting money from Big Pharma and the NRA enslaves you to drugs, fear and death.

Anyhoo.

Where was I? Christmas greeting cards from your future health insurer (for whom you've already girded your loins in expectation of the Fight Over Formulary and Non-Formulary Drugs) are irksome and seem a waste of the cloud, no?

Here's some good stuff. I spent a few glorious hours in Sophie's school classroom this morning. I brought fresh donuts and about nine Trader Joe's gingerbread houses for the kids to put together and decorate. They're a rowdy, fun bunch of young men and women. They are Asian and Hispanic and African-American and Caucasian and Christian and Orthodox Jewish and Muslim. They sang Christmas carols, danced and laughed and wiped frosting all over themselves. They worked very hard throwing sprinkles over the roofs and piled the little sugar people up by the front door. The teacher declared awesome mosh pit! and they all giggled. If you need a bit of cheer in your life, if you're completely demoralized by all the bullshit -- by the freedom lovers and gun lovers, by the war mongers and terrorists, by the expressions boots on the ground and collateral damage, by the Federal Reserve -- you should visit a class of young adults with disabilities.

You won't feel gratitude for what you have and what they lack. You'll want what they have and what you lack.

Helping Hands Needed

A reader sent me a lovely email about this blog and about the community that has grown up around it. She is a mother of two children, one a young girl with Down Syndrome and the other a teenager with significant and crippling anxiety and depression. I asked her permission to post her question here, because I just have a feeling that someone out there reading might be able to help her. If you can answer, please leave a comment or email me your contact information. If you yourself write about these issues, please let us know! My email is elsophieATgmailDOTcom.

Do you know of any blogs written by moms, or dads, of teens with major depression/anxiety?   I've been looking for a really insightful one, with really good writing. 

Thank you so much. 

Idle Thought of the Evening to Cheer You Up

If that old photo of me on the board with that cute man riding the waves doesn't cheer you up, then maybe this idle thought that I just had as I lay on Sophie's bed in her room will. I know everyone is feeling incredibly glum. Nervous, Anxious. Nauseous. Filled with anger. Overflowing with lassitude. A deep sense of futility.

I'll remind you, though, of that time Bush won the presidential election the second time.

Remember that? Remember that morning, especially those of you in Los Angeles who walked into the preschool parking lot with me and had to look at the folks who'd been sporting big Ws on their Range Rovers?

Remember how you felt?

Do you feel worse now or better?

I'm feeling so much better that I hauled my old doddering ass off of Sophie's bed, scanned that old photo of myself on the surfboard with the cute man riding the waves and typed out this post.

Come on! Don't you feel a bit better?

Anxiety

Listen and read.

Alexi Murdoch and Soren Kierkegaard

Oy

Along with good Lord, oy is one of my favorite expressions and comments. We had one of those darkest hour before dawn kind of mornings this morning, beginning around 4:00 am when I woke up with a start and heard The Husband shuffling down the hall, the sound of Sophie humming and the hacking cough of Oliver. I got up to investigate which included asking The Husband why the television was on, its blue light flickering and he replied that Oliver was up and that he was up and that Sophie was up. 

Oy.

I went to the boys' room, where Oliver was sitting up in bed with his bedside light on and flooding the room with light. Turn the light OFF! I hissed, and silently handed him a cupful of Boiron's Honey Cough Syrup. It's day four of Oliver's cold, and while I've been the model of compassion and sympathy during the day with him, he tends to milk the illness for all it's worth and in so doing, my compassion and sympathy leak away. I'm afraid that he's already showing signs of a "bad" sick person and will, I'm certain, morph into a guy who has Man Colds. I pity his future partner.



I then walked out of his room and into Sophie's where I found her walking around, humming and shivering in the cold, so I put her back in bed and climbed in beside her, curled around her and closed my eyes in a vain attempt to go back to sleep.

Oy.

This is where the dark night of the soul comes in, when all rational thought slips out and worries and anxieties slip in, as well as inane questions that slither around the room, under my eyelids and into my brain. I guess Oliver isn't going to school tomorrow, again. I can't believe The Husband can lie on the couch and watch silent tv at 5 am. How am I going to drive Henry four times to the westside a week and back for practices and pick Oliver up from rehearsals for the whole month? If I were like Serena Williams' mother who drove her and her sister constantly around to play tennis, would Henry be a better lacrosse and baseball player? Have I dedicated myself enough to helping him fulfill his dreams? This is so not mindful to lie here and think these stupid thoughts. Breathe. Now I can't go to the conservator workshop tomorrow morning and will have to go next Friday. What if I don't get it done, Sophie turns eighteen and has a medical emergency the day after and I can't make decisions for her? Should I make Oliver go to school tomorrow even though he's been up half the night, coughing? Will I ever exercise again? I shouldn't have eaten so many of those chocolate covered almonds. How much Onfi is left before I have to do that whole Canadian thing again? I haven't put Sophie's orthotics on enough this week. Why is The Husband snoring and why doesn't he fold the afghans up and lay them over the couch when he goes to bed? Why do I always fluff the pillows in the morning?

You get the drift. Good Lord. 

So, the morning is here. Oliver is home and I've put off my workshop and sent Sophie and Henry to school. The Husband is grumpy but will soon leave the house, too, and I'll be stuck here filling out financial aid forms and tending to the Boy with the Man Cold.

Happy Friday.