Sunday, January 27, 2019

Dispatch from Los Angeles, via Holland and Italy*

dedicated to my comrades, particularly Sandra

When my friends and family check in with me of late, I reply with the above Bitmoji. Those of you who live on another, better planet, or who don't own a smart phone, or who disdain pictorial representations of oneself or, worse, words, who bemoan the dwindling use of language and/or have no idea what a Bitmoji is or even an app, should stop reading now. I wish I lived on another planet, wish I didn't own a smart phone, disdain pictorial representations of myself and, worse, of words, and I bemoan the dwindling use of language, but I do love the Bitmoji app and find endless delight finding exact representations of myself thinking certain thoughts, having certain emotions and otherwise living. 

It's going. My uncle is recovering very well here at the house, and Sophie is on her second day of her sixth month of intravenous immunoglobulin infusions. I have successfully navigated the World of Sub-Sub Acute Rehab by scheduling my uncle's health aide, bathing, OT and PT home health visits. The highlight of my week was when I paid $1.69 for his medication which filled my tiny little mother mind™with wonder, as you can imagine.

If you can't imagine, I wondered what our lives might have been like if Sophie's medications cost $1.69 over the years, as opposed to at least $70 after countless hours of wrangling and upwards of $500 when the wrangling doesn't work. All thinking by the tiny little mother mind™ is rhetorical, of course. Socialized medicine works effectively, I guess, for some of the country but could, apparently, be disastrous for the rest of us (I don't want no government coming between me and my doctor!), so we continue to grease the wheels of capitalism, the free market and Big Pharma in the labyrinthine corridors of the greatest country on earth's medical system, Brazil.

What else?

Speaking of capitalization, I've CAPITALIZED on the increased caregiver duties by increasing my meditation practice which means at this point that I've started meditating off and on all day long. Reader, I can already feel those neurons in my brain firing off peace as opposed to chaos.

The trick (for me) is to be truly mindful of even the shitty stuff, to acknowledge it in whatever way you need, to dwell on it, to muck around in it, to weep profusely over it, to wallow in it and to take your time doing it. It's only then that it rolls off your back, maybe even disappears. I say trick because, let's face it -- I generally feel completely unhinged and at the edge of consciousness, especially when I learn at 7:15 in the morning that Saint Mirtha will not be coming in, that I won't be able to attend my friend Tanya's screening, that the IVIG nurse is going to be early and -- well -- I won't bore you.

So, that's the dispatch from Los Angeles. The upcoming week includes continued caregiver duties on two fronts but also more teaching of English literature, a Clippers game with my love and, hopefully, a trip to Portland next weekend, planned for months.

* This title is a nod to those who were subjected in the early days of their child's disability or diagnosis to the treacly treatise by a certain writer who compared the journey of special needs parent-dom to landing in Holland instead of Italy. Don't ask.


  1. I've never understood the fear some Americans have of socialized medicine. We all have access to excellent health. Yes, there can be waiting times but it's based on need, not money. I am a firm believer in everyone helping everyone. None of us can do this alone; this being life.

    Glad your uncle is recovering and glad Sophie is getting her IVIG treatment. I wonder how much of epilepsy is autoimmune? Just a thought I had the other day. It makes sense, not in all instances, but in some. Especially since Sophie's appeared after a vaccination which could have triggered an autoimmune response. I imagine epilepsy like most things is multifactorial, with just the right or wrong factors coming together to trigger a response or disease.

    I like your Bitmojis but don't have the skills set to download them. Have a good week:)

  2. Oh my god, woman! And why aren't you volunteering at the local soup kitchen? Huh?
    You slay me. In every good sense of the phrase.
    May Portland come true. I love your Bitmojis. But not as much as I love you. By any means.

  3. Glad your Uncle is recovering and that his Insurance provides relief from the burden of ridiculously priced meds out of pocket. Glad Sophie is receiving her Treatments. I hope Portland gives you the well deserved respite from Caregiving on two fronts.

  4. At work (state early intervention program for children with disabilities) we were recently given a packet of materials to use with parents. Yep, the dreaded Holland story was included in the packet. I raised it up in the air and said - Please, no to this. Just no.

  5. Omg, the Italy thing. I thought that was just about Autism. It makes my blood boil with rage. Some people get no fucking holidays anymore.
    I hope you and your uncle get through this.

  6. I do not know about Bitmojis, but I have heard of apps. At least I'm not THAT out of touch. LOL! Bravo on the meditation and it sounds like things are going more or less well. I'm glad!

  7. Wow...I dearly hope Portland pans out and exceeds your expectations!

  8. Oh no.I missed a link. I'm so sorry about whatever befell your uncle. Sending love. My bitmoji is still lying in bed, though I'm up and around.

  9. Oh, that Holland crap. This is the worst kind of Kool-aid.

  10. I see you.
    And extend a welcoming hand to you from Portland! No guarantees on weather, but there's a lot to do and see, and the unending expanse of greenery may be a welcome sight.

  11. I hope you are able to skip town as planned and take some time to pour back into you. In the meantime, sending up prayers!

  12. Portland=Powell's!!!!

    Please have an afternoon at the huge bookstore of my dreams. And may you get to go.

    XXX Beth



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