I live in Oregon.
I have been on Medicaid since before the Affordable Care Act, back when the Oregon health Plan first started.
And in the past I seldom felt angry at my doctors or at the healthcare system.
I figured I should be glad to have healthcare I could afford on next to nothing.
But since unmasking my ADHD, since lining up all the medical stuff I have personally experienced since 2020, and dealing with the changes in my doctor's office over this time, well, I have begun to feel angry.
Some of this is simply the bad luck of my last four years; a foiled album release followed by Covid lockdown, getting Covid and then Long Covid, followed by relatively little meaningful Long Covid coordination due to massive understaffing; ; and now living with the results of all of that foced inactivity and watching my body age and slow down so badly; and finally the ADHD diagnosis and all of that. The last four years have checked off a host of boxes for me with increasingly negative results all around.
I know I need to walk in gratitude, and I make a heroic effort at that every day for so many reasons. But I find that with every medical disappointment or setback, I am now feeling angry, too.
Angry, older and forgotten -- by my government, by healthcare agencies who tell me to stay where I am because it wont be better at any other practice taking Medicaid patients (and it may well be worse), by all the people and organizations that have the power to do better, and which haven't been.
So tonight I am not feeling especially grateful for the dregs which have constituted a great deal of my healthcare since 1985.
(Note: I have to say that the only doctor who has been there for me consistently this whole time has been my gastrointerologist, who has fought for me to get the meds and procedures I need because he knows how challenging a life with Crohn's can be.
He's a freaking rockstar and I am truly grateful for him.)
But what do I do with my anger when I am too exhausted to take to the streets, and when I feel pretty certain that my efforts to reach out to my elected officials will be meaningless because the world is too big and the means to make it better are too small?
Beth Hamon
Jewish Music Made by Hand
Thursday, March 28, 2024
Today's Bonus Content: A medical report card, 2020-2024
I would not wish the last six months on anyone
..::grumble-grumble-filthandfoul-etc::..
Combination of
--not being even CLOSE to a digital native
--my doc insisting on using the clinic's preferred program for virtual appointments
--which almost NEVER works for me
--but she'd rather not talk with me over the phone
--and has marked me as a no-show
--and now the office is trying to get her to get back to me
--but I have to wait until she's done with the patient she skipped ahead to
-- with the computer tab open
AND-AND-AND
All the things.
SO MANY things ALL AT ONCE.
Because for the last six months EVERYTHING has been happening so much, in and out of my body.
I would not wish the last six months of my life on anyone.
There's simply been too much content to process in so short a time.
..::breathes in and out six times like the counselor advises::..
And now, 30 minutes later, I've spoken with the sleep doc who advises me that I should try wearing my CPAP mask during the day to help me get used to it. Even after I explained that unmasking has heightened my sensory sensitivity and made it harder to get comfortable with the mask, she stands by her advice.
Well, okay.
But first I need to just feel my feelings for a few minutes. Because everything feels so much these days that any single thing that feels like a struggle can make me cry. And I have learned that it's better to let the tears flow.
******
I am still able to offer gratitudes at bedtime, but I'm far more distracted about it than I used to be.
And it feels a bit like faking it till I make it. And the Hebrew prayers just don't even FEEL at this point.
But Sweetie remainds (sometimes daily) that this is not permanent, that it will pass and I will figure out how to live better with my new, less masked self, and she reassues me that she loves me (sometimes more than once a day because my unmasked inner child needs that kind of reassurance right now). And Cleo the cat still follows me into the bedroom when I'm ready to retire, and she purrs and makes biscuits on the blanket and head-butts me. And lately she stays and waits for me to stop fidgeting so she can curl herself around my ankles. Every night. And all of THAT is something I really am grateful for.
(Photo: Cleo, being A Whole Mood.)
Wednesday, March 27, 2024
Finding the others
Many years ago, there was a television show about an adolescent boy who was feeling shunned at school; he was bright, nerdy and definitely not one of the "cool" kids. He was best friends with a girl at school who liked him for who he was, and shared some interests with him (like theater, comic book art, hiking out in the countryside and other things the cool kids weren't generally drawn to). The two were each other's supports at school where both were thought of was weird and outcast, and there was a vague hint of something other than friendship out there in the future.
One day, the boy came home to find his parents in a frenzy of packing. "We have to leave tonight," his mother told him. "Go gather some things and pack your suitcase. I'll explain everything when your father gets home." The explanation was that the boy and his parents weren't humans at all, but another species who'd been sent to Earth to quietly live among humans and learn about them. His father had worked on earth as a scientist, but he was actually an explorer, and there was a fully functioning spaceship buried in a silo under the family's barn; this family was one of the go-to families for when the time came to return to their home planet.
The boy was shocked. His parents had come to Earth before he was born, so this human life was all he'd ever known. He asked his mother what life on the home planet was like, and his mother reassured him. "It's really beautiful there. You know how you like to go hiking n the hills around our town? Well, there are plenty of amazing, beautiful places you can hike there, too." The boy listened as his mother went on: "And we have our own language. It's beautiful. I'll help you learn it when we return."
"Tell me something in your language," the boy said. His mother obliged by saying she loves him, and he said, "It is beautiful. It sounds like a flowing water."
But the boy is also sad. Because the girl is his best friend in the whole world and he doesn't want to leave her. When he thinks of this he gets very upset, runs off to his room and locks the door.
The family gathered inside the spaceship with other families, all talking excitedly with each other. The boy sat glumly in a corner, still sad about leaving his best friend and the only life he'd ever known. It wasn't an easy life, especially among kids his age, but it was still a life, and he had no idea what he'd find on this other world where he'd have to start all over. He was scared and angry and very sad.
Then, out of the corner of his eye, he sees his best friend walking towards him.
"I knew it!" she exclaimed. I just knew you had to be one of us too!"
They embraced and laughed and talked all night, looking forward to their new adventures. together.
(and fade)
*******
The more people I share my ADHD diagnosis with, the more I have found that a surprising number of them are also neurospicy, either with ADHD or some form of autism, or both.
And I suddenly remembered that old TV program, and realized that, even with a lifetime of masking, I had still found quite a few other neurospicy folks along the way, even if I or we hadn't known it at the time.
So I guess it is true that you and your people find each other, given enough time and honesty.
And in the midst of a momentary feeling of sadness and/or self-doubt tonight, I remembered that story and immediately felt better.
You will find your people, and they will find you.
Just have a little faith.
Tuesday, March 26, 2024
She’s a whole mood.
A whole mood.
Later while I napped, she settled in and curled hard against my ankles. Sometimes she does it at night while I’m falling asleep.
I love it when she does this. She’s like a little furry anchor.
#cleo
#kittylove
#purr
#unconditional
Monday, March 25, 2024
Finding wholeness while we're broken
I had lunch today with Gary, my Portland Rebbe.
He's a lovely human being and I really like working with him.
He's also become a friend.
Our conversation began with me holding back tears while I tried to let him know where I was at and all that I was struggling with. I worried that if I couldn't play guitar I would not be as useful in our monthly Friday evening gatherings at his shul.
He assured me that nothing could be further from the truth.
"So you'll sing what you can, and maybe play a little drum when you can, and you may feel broken right now but you'll still bring your whole self every month and N (the other fellow with whom we've been working this year, more grounded in tradition than I am) will be quite thrileld to see the guitar go for awhile. Nothing else has to change."
I admitted to him that when I led the tefilah service with the religious school kids, I felt so lost in my own faith right now that teaching them made me feel like a fraud.
"You're not a fraud," he said. "You're one of the most authentic Jews I've met. You're so honest about where your head and heart are and what that's like. You admit when you're struggling in a world where we are constantly told not to show our weaknesses. But our vulnerability is what makes us authentic. You have nothing to worry about."
I could have cried again. But I didn't.
And then, the Rabbi told me he'd been diagnosed with ADHD in his early forties, and his youngest child had been diagnosed at age seven. I was surprised. He said, "I don't know what it must be like to find this out in your sixties, but know that you're still you and you are loved by your people and that is really all you need to remind yourself of. The rest will become clear whenever it becomes clear. Do the counseling and the meds and the naps and everything else and keep being you."
Then we talked about a friend of his who had lived in Japan for years and had learned the craft of Kintsugi, the art of repairing broken pottery with precious metals.
Gary showed me photos of his friend's work on his iPhone and we talked about brokenness and wholeness. Then we talked about eyeglasses for people with color-blindness. Gary is color-blind, Using an app on his iPhone, he showed me what he sees when he looks at a bowl of Guacamole: it was a little bowl that looked like it was filled with baby shit. Then he flipped on the app and the guac became a respectable green.
"Reds are amazing," he gushed. "They're mind-blowing."
He told me he's going to get a pair of glasses that will allow him to see color. They've come down in price and he has sixty days to decide if he likes them or send them back for a refund.
I was shocked. I hadn't known there were special glasses to help you see color. I imagined it was rather like a deaf person turning on their new cochlear implant for the first time. Wild.
I gave Gary some Jewish text study books I knew I would no longer need. He'll find someone who wants them. (I kept my book-bound Torah and my copy of Pirke Avot, because they've always been my favorites and who knows? Maybe I'll want to dip into them again at some point. I'm taking my Mussar books to Powell's to sell, because someone in my current emotional state probably doesn't need to keep a notebook of their character flaws just now. If I want to stydu Mussar it will wait for me.)
And when I got home, my head was stil "fwip"-ing like mad and I felt SO drained and exhausted, but also better. I still don't know where I am or where God is, but I knw where my people are and that is a good thing to remind myself of whenever I need to.
About the "fwip":
I've experienced this for over ten years, since before I began perimenopause. The "fwip" is a tiny sound inside my head that happens when I'm depleted, emotionally ragged, and it sounds and feels like a little "fwip" sensation that shows up inside my head, in my ears and behind my eyes. I sometimes feel dizzy along with the sound/sensation. I've asked multiple doctors about it and one of them guessed it was a kind of pain-free migraine.The others had no clue. I still get the "fwip" now and then, especially when I'm really depleted. So I'll try to get decent sleep tonoght and hope it clears up. It can be annoying if it keeps going all day, whenever I turn my head or just my eyes in another direction. And it can be accompanied by dizziness. But at least there's no physical pain.
Tomorrow, counseling and hopefully no more "fwip" so I can take a walk or a little bike ride.
Sunday, March 24, 2024
And while we’re at it…
I think I just hit upon why “somatic” or body-based trauma healing feels slightly suspect to me at this moment in my life.
First, it’s always offered by younger women who, despite their prior health challenges, have somehow managed to arrive at a place where they glow with vibrancy, are put together nicely, and are financially secure. Then, they have the nerve to tell me that EVERY woman’s body can heal and get to the same healthy glow, if you sign up for their exclusive coaching program.
And then, they treat my stuff as if I have all the time in the world.
Let me understand: you want me to, when a painful memory triggers a difficult emotional response, to focus on where the trauma resides in my body? And then you want me to figure out how old I was when the initial trauma happened and then somehow “Re-parent” myself at that age in all the ways my parents failed to parent me originally? And you are sure that I’ll be able to heal myself in this manner?
Really?
I have several chronic conditions, two of which have caused me to spend at least a quarter of my entire waking life in the bathroom.
I have another which is forcing me to stop working at everything I know how to do.
I have another which came on during the Covid lockdown, rendered me completely disabled for two years during lockdown, and which resurfaces a little bit every time I catch a cold.
I have yet another which has required me to start sleeping with a CPAP machine every night.
And the combination of all of them forced me to file for disability at 60, an age when most my friends are still fully active and productive.
And you want me to FOCUS on my BODY? Because apparently I’m not doing that enough already?
You know what?
With a very recent diagnosis of ADHD and six months of unmasking, my head’s not a lot better. But it’s still more interesting than the rest of my body. So yeah, I’m gonna chase some dopamine and be more honest and hang out in my head for awhile.
Fuck you AND your healthy, expensive glow.
Because life is short when you’re older.
Watching a video just now, from a woman dispensing advice on how we need to ditch the story, the story we’ve told repeatedly about a trauma, and process the emotion, the residue of that trauma that is left in our bodies.
She lays out an exercise that she says takes “all of ten or fifteen minutes, that’s all” to process the emotion and where and how it feels in the body.
Yeah.
Ow.
My counselor wants me to do a lot more of this. She calls this “re-parenting” and while it seems fine on paper, it’s a lot harder for me to tell my younger self that she’s fine.
Because she wasn’t fine.
She wasn’t reassured by her parents that she was fine, or would be fine.
She wasn’t reassured by her doctors that it’s possible some of her several chronic conditions may have been exacerbated by the trauma she experienced and which she was never comforted over at the time.
My younger, highly sensitive self was, in hindsight, positively crushed by a string of traumas that began at age four and continued in earnest until I was in my late twenties. And I spent a long time trying to deny how crushed I had been. But the truth showed up in my body, amplifying the various chronic conditions that were part of my medical and genetic heritage. I spent a very long time downplaying them, trying to power through them so I could live my life.
Getting the diagnosis of ADHD has forced me to acknowledge just how battered I’d been by all the traumas of my youth. And my body is letting me know just how much emotional and physical damage had been done.
I think that the older you are when you begin to get all the information about what is happening in your brain and body, the harder it is to imagine that you will ever be able to re-parent all the selves at their respective times of trauma.
And while that makes sense, when I ponder trying to do that with every emotion from the multitude of traumas, a lifetime of little traumas that came from not fitting in, from being regularly uprooted throughout my youth, from realizing that in some ways I was never fully rooted in my own family, all of that adds up to a mountain of wrong and hurt and pain held in my body and it’s overwhelming.
If you’re trying to do this in your twenties, you have a hope of dealing with most of it.
But when you begin doing this in your sixties, and you imagine being able to process even some of it, you quickly become confronted with the terrible truth that you’re getting rather a late start, and you will be lucky to process even a quarter of it before you die. When you start late, there will remain a lot of unprocessed, unresolved pain and grief.
So you make a deal with yourself.
You tell yourself you will try to do what you can, you understand that it will never all be healed because you got such a late start, and you try to give yourself a break for what you can’t do.
You do this because you live in a world that does not offer nearly societal support for people who recognize that they have been broken by all the reminders that they did not fit into this society neatly. You do this because in the end, the only people who will cut you the slack you need are people who have been through this kind of life themselves and have owned up to the truth of it.
You do this because, in a society where medical and therapeutic resources are scarce for people without means, you will not get all the help or support you need. The world has already proven that to you hundreds of times, over and over again. (For reference, please refer to Covid and the resulting medical shutdown of the last four years, from which we as a society have not recovered.)
You do this because life is short. Because you got rather a late start.
And because you got that late start and lacked resources, you know that you simply do not have the luxury of time and means to fix the larger part of what’s broken in you.
Life is short. And you know in your bones that you don’t want to spend whatever you have left of it feeling like a walking hospital zone all the time. So you give yourself permission to fix what you can, rest when you need to, and still try to squeeze a little joy out of your life if you can.
******
I’ll own that this is some of my anger talking right now.
But I’m not angry at me so much anymore.
I am angry at people who are dead, who I can’t go back and ask “what the FUCK” or tell them how I am now.
I am angry at a family tree and a history and a world that made my parents ill-equipped and unable to parent well, and cousins who want to explore our familial past with me so we can discover just how messed up our grandparents were.
No thanks.
Maybe if I were twenty, and had time and energy.
Maybe.
But I’m sixty-one and goddamn it, I need a break.
So when I can re-parent myself and feel the feelings, I will, and I know it will be beneficial for me.
And at the times when I cannot re-parent myself, I am going to give myself a break. I’m going to chase a little dopamine and drink my coffee and wait for a positive outcome from the disability panel. Because there are just too many days when I don’t feel optimal, and not enough days left in my life to make up for all that.
So I’ll do what I can do, and learn how to be at peace with being imperfect in an imperfect world.
Because I just don’t have enough spoons to tackle this any other way.
This found me on a day when I was exhausted and trying to recover from a better day when I blew up a ton of spoons, I expended a lot of energy. So everything feels closer to the surface. And the tears come more easily at times like this. So I just cry. And I tell myself to cry all I need to, to make up for the times when I was ridiculed for crying or for the times in adulthood that I finally learned how to close off my tears in order to be less vulnerable. Now, I cry when I feel the tears come, and I do not apologize.
And if anyone tells me I’ve become such a downer or needy, well, I’ll be done with them.
Because I’m older now. And life is short.