Today's Bonus Content: A medical report card, 2020-2024

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?

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.

Losing My Religion, Part Two: who the hell AM I right now?

I lit Shabbat candles tonight with Sweetie.

I’m always glad to do this with her. We exhale the week just behind us, we light the candles, draw in the light, say the blessing and then we embrace and kiss, and that’s how we begin Shabbat. And I love it every time.

But the calendar is also heading into the big Spring festivals of Purim and Pesach (Passover), and I dont know how I feel about those right now.

I don’t know how I feel about doing much that’s Jewish at all, to be honest.

I have known that there were things about my life that were off since before I was diagnosed with ADHD. Getting the diagnosis only confirmed a lot of what I had been experiencing — a sense of disjointedness in the world, of being out of sync with things, while I struggled to know where I belonged and what I was meant to do and be in the world, especially after my career began winding down.

What surprised me, after the initial sadness at having to put my music career to bed, was how relieved I felt at not having to hustle for gigs that were getting harder and harder to find. I thought at the time that I could content myself with a once-monthly thing at the synagogue here in town. How difficult would it be to focus my energy and passion on that schedule?  

But as my hands became less able to play guitar, I found that my enthusiasm for playing Jewish music at all was flagging as well. I needed the money, but I felt like a fraud trying to lead kids in prayer and music earlier this month, when I struggled with my own sense of identity and belief.

Over then winter, so exhausted of carrying the weight of my sadness related to my membership at Havurah Shalom, and with Sweetie’s blessing, I resigned my membership and decided that I needed to be unaffiliated for awhile while I sorted things out. I felt better almost immediately after I did that. I’m still friends with people at Havurah and believe I will be no matter what as long as we stay in touch.

Purim is a holiday that, to be honest, has never held a ton of excitement for me. I’m terrible at getting properly drunk — I get sick before I’ve had enough alcohol to feel joyously wild — and I don’t enjoy dressing up in costume, mostly because I spent the first 25 years of my life with a core piece of myself in hiding and don’t want to hide any part of myself now. So scratch Purim. I honestly won’t miss it.

Pesach is another question. I used to greatly enjoy preparing the house and setting the table, welcoming guests and leading the Seder. Then Covid came, followed by Long Covid, and even though we were able to reunite with close relatives as early as 2022, I lost my enthusiasm and energy for cleaning and preparing the house. I lost my enthusiasm for leading a full Seder. So for the last two years we’ve mostly just made our favorite Pesach dishes and shared a meal with family, but nothing past that. And to be brutally honest, I haven’t yet found my former enthusiasm for doing a full-on Seder, so we’ll once again have Just A Nice Dinner with family and a few friends. We’ll recount the story in highly truncated form, or we may not. 

I’ve been going through an incredible time of pervasive grief, punctuated by shorter periods of apathy as regards the larger world. I just don’t have the energy to care about much beyond myself and my closest beloveds right now, and I don’t know when my field of concern will expand again.

I informed my Bremerton Rabbi that she probably needs to start looking for another cantorial soloist for High Holy Days next fall, because I couldn’t promise to be able to play guitar again by then, if at all. (As it happens, that synagogue community doesn’t yet know if they could pay me as much as last year, which I honestly am not so worried about.) I have to admit that I was relieved to be able to back away from the commitment. 

I’ll meet with the local Rabbi on Monday to discuss my future at his synagogue. If there’s a way I can continue to help him out once a month through May or June, that’s fine (and like I said, I can use the money because it’s the only work I’m still doing at this point). But I cannot guarantee anything beyond that. Sweetie assures me that I cannot work at all we can still pay our bills (just), and that if I have to stop working it will only bolster my disability claim. 

The awful truth is that my sense of identity is all jumbled right now. Who am I now that I’m no longer trying to mask the more annoying parts of myself? Who am I if I feel SO disconnected from my Jewish identity, if my sense of Jewishness feels slightly suspect to me? Who am I if I don’t know who I am?

At the doctors office yesterday, they did a depression assessment. Am I depressed? Well, yeah, probably at least a little. Since 2020, my life has fallen down farther and farther and right now it feels like it has gone almost completely to hell, with NO a sense of when or if any recovery is in store.

I feel quite alone these days. Forcing myself to go to bicycle events when I can is good, but I don't always have the energy to do so. (I’m still debating whether I’ll go to Coffee Outside tomorrow morning or not, and may not decide until just before I go to bed.) Jewish communal events don’t seem to grab my interest these days. And of course, I find myself hiding in a corner while my Zionist and anti-Zionist friends continue to fight over whether Israel should exist as a Jewish state. I feel like it doesn’t matter if I have skin in that fight, since someone will find a reason to hate me for being Jewish No Matter What, honestly. What’s a little strip of desert the size of Delaware in the big picture when people will hate or love me anyway?

I start the Wellbutrin tomorrow. 

Losing My Religion? Part one in a possible series

I am Jewish. I was born of Jewish parents, and though they weren't religious and did not raise me fully steeped in Jewish life at home or out in the world, I am still Jewish. Because the most murderous of the antisemites say so, and that is good enough for them to kill me if they ever get the chance.

I did not really find my way into Jewish communal life until my early thirties, when I walked through the door of a synagogue, liked what I found, and stayed. It was not until I had found my way into Jewish community that I began to feel Jewish.

Along the way, I learned early and often to not ask uncomfortable questions about Israel. I learned this because I had not grown up in a Zionist home; because I could never afford a trip to Israel or even to an American-Zionist summer camp experience; and because very early in my adult exploration of Jewish communal life I learned that Zionism was for people with enough money to express and explore it.

To my strange -- and estranged -- way of thinking, Israel seemed like a Jewish theme park to which American Jewish parents sent their kids each summer, in hopes that the kids would fall in love with Israel, come back changed, and spend the rest of their lives working in white collar professions and donating tons of money to Israel and other Jewish causes. In short, you sent your kid to Israel to teach them how to grow up to be a good macher.
Since I had not come from such a family, and since I was working for peanuts both in and out of the Jewish world, I would never become a macher myself. And yet, when I began teaching in Jewish religious school, it became clear that my job was to help raise up good Jews, Jews who would be faithful to Judaism, to Jewish community and to Israel.

I think this is where I began to struggle.

While I loved teaching music, Jewish life cycle and later on, Hebrew, to my young students, and I loved their energy and silliness, I struggled inside with my own sense of authenticity. How could I teach what I did not know for myself, what I did not feel for myself? With only a couple of exceptions, there was no one to help me in this struggle. Eventually, I learned to say NO whenever I was asked to teach about Israel. I was not equipped, and in certain ways I never would be. It mostly worked, and I mostly never had to teach about Israel, which got me off a very large hook.

Over time, as I grew in my Jewish knowledge and in my love of "doing Jewish," I became part of one, and then another, synagogue community. I went to services. I tried to pray, though I almost never knew if it was making a big difference. It was often very hard to sit still. When I learned that I could get up and go out into the foyer for short breaks, it was a revelation and a gift.
I grew in my understanding of phonetic Hebrew, and learned the meanings of the most important words. If I didn't always have what I'd call a relationship with God, well, who did? We all wrestled with that; as Jews we were supposed to.

As my gifts and skills became more apparent, and lots of voices suggested I put them to work professionally, I did so. Teaching in religious school, learning to lead services, and eventually even trying cantorial school (where I crashed and burned after one semester that showed me how far outside the bubble I still was). It was all highly informative and I am grateful for the experiences that came my way. I was able to fashion a sort of career for over twenty-five years, writing songs and touring as a Jewish artist- and educator-in-residence at synagogues across the country. And it was an amazing, wonderful time.

But there has been a hurdle I can't get over. And while you'd think it might be Israel, it's mostly not. I will leave it to others to argue whether Israel is a Jewish homeland or just another white colonial state.
I can't really answer that for myself, because the answer I keep coming up with is that it's probably a little of both, and that there is no solution, this war will never end until the world does.
That's not a popular stance to hold in the world, and I seldom discuss it with my friends, Jewish or not.

But I digress.

The real stumbling blocks for me have always been class and belonging.

It costs money, a lot of money, to Jewishly belong in an active way. There's an expected path and one simply sets their feet on it and starts walking. More accurately, one has their feet set on it in childhood and is supported along that path until they can walk it on their own.
For the less-monied, there's Torah study and a host of online possibilities, of course; but these more passive things simply don't stand in for the live, in-person experience of belonging in a group -- of knowing the lingo and having the right passwords and the shared comfort in common experiences of synagogue life and summer camp and all that goes with that.
And while it is possible to do some of those things in adulthood, as I did, it is not the same.
It cannot be the same because along with the commonality of those experiences comes a level of belonging that is simply not open to me. It never was. It never will be.

I am the daughter of The People Who Left. And who left again and again, never putting down roots in the places we lived, or even in their own marriage.
My parents were nomads of a sort and they never could really stop wandering.
My restless father spent more than half his life running away from who he really was; and my mother spent her life trying unsuccessfully to escape a truly horrible childhood, reinventing herself with each telling of her story to someone new.
How was I to learn about community, about putting down roots, from parents like these?
It was impossible, though I tried as hard as I could.

When I tried to "do community" in the Jewish world, I was successful to varying degrees.
What held me back every time was my lack of a Jewish youth and my lack of funds.
I'd watch as other Jewish artists enjoyed success after hard-won success, cranking out albums and making enough money on tour to keep going to conferences and getting their name and their songs out there every single year, three or four times a year, until finally they became the "it" folks, the people who were invited to do the super-cool things like become paid faculty at the very same conferences, or travel to Limmud UK (all expenses paid) to teach and perform. On top of this, many were also able to have children and pay synagogue dues and give their kids the Jewish education they'd had, or even better. How did they do it? Where did they come up with the money? How did they gain access? How did such a progression work?

I never got a single answer from an authoritative source. Instead, I cobbled bits and pieces of information together, and those pieces included:

-- growing up Jewish and Jewishly connected. This gets your foot in the door better and faster than anything else, including actual talent or skill. In fact, talent and skill rank farther down the ladder than you might think.

-- having a spouse who earns good, steady money doing something non-musical, and which usually comes with good health insurance and access to quality medical providers. In short, financial security that a musician can't usually earn on their own.

-- they or their spouse is full-time Jewish clergy with a pulpit. This is often a better paying gig than you might think, especially in the more liberal movements (though that is slowly changing, and I may address this in a later post). A starting full-time Rabbi in the Reform movement can generally earn at least $75,000 a year, and by the time they've been at it five years or more it's up over 100K. Plus they get an incredible benefits package.

For someone whose annual gross income topped out at under $30,000 -- and that was almost 20 years ago -- this is mindblowing. Equal parts "How have I lived on so little?" and "What on earth are these people spending so much money on?"

-- They know the right people because they all grew up doing Jewish together, or they know friends of friends who did. It's Jewish geography. I can play it to a small extent because of my years as a Jewish artist-in-residence, but my mileage is teeny-tiny compared to anyone who grew up in the bubble. Connections matter.

*****

Congregation Beth Israel, 2008

How on earth did I even get a foothold in this scene? In retrospect, I'd have to say it was a combination of:

-- having talent and skills. I came into this scene in my thirties, already a trained musician with performing, teaching and arranging experience. Composing followed soon after and was a logical next step.

-- Being just quirky enough to get noticed. Coming from Oregon (not a Jewishly dense place) and talking about things like sustainability and using once's resources definitely caught peoples' attention.

-- not taking anything for granted. Lacking the entitlements that a Jewish upbringing and sense of belonging came with, I had to create a lot of myself and my music from scratch, and find more affordable ways to make and distribute my music. I'm fortunate in that I began my career before the internet had become ubiquitous and a hands-on approach could still be rewarded.

-- Being grateful for every scrap I could find. Because I knew I didn't have anything just coming to me. I was so tickled that anyone wanted to actually pay me to make music, how could I not be thrilled whenever a chance was offered? Even if it was for free, or for peanuts, it beat pulling lattes for a living.

*****

But I had stumbling blocks, too:

-- No Jewish connection while growing up, and a highly mobile childhood. They can't find you if you keep moving around.

-- Inconsistent and/or poor healthcare in my youth. My parents didn't always have insurance, and I couldn't always be seen by doctor when needed. As a young adult living in the time before the ACA/Obamacare, I had to live with chronic autoimmune conditions without insurance or medication, and this did make a big difference on my overall well-being and energy.

-- Coming out as a dyke in the 1980s. While I don't regret my choice to come out when I did, it was rough. I lost jobs and housing and got physically beaten up because of it. Coming into Jewish communal life in the late 90's as an openly queer woman was rough, too; synagogues weren't yet ready to accept me as I was, lending another layer to my sense of non-belonging. Hanging in there and waiting for the times to catch up with my reality wasn't easy. In hindsight, I know it had an averse effect on my mental and physical health, both in the short-term and the long-term.

-- marrying a woman. No matter what people say, women still earn less than men on the whole, and it costs a hell of a lot more to try and have a baby. During our infertility struggle we did not receive nearly as much support or empathy as a straight couple would. While we are in a much better place with our childlessness now, it was difficult and lonely to get to where we are now.

-- a highly evolved understanding of classism in the world, and in the Jewish world. When you grow up dreaming of things you can't have, and you end up earning even less than your parents did, it informs the way you see society. I don't apologize for that. It's just a thing.

In short, even with my ability and resourcefulness, I simply had too many strikes against me to end up where I saw so many of my colleagues ending up professionally. And personally.
Now that I am at the end of that career, it does take on a different glow. I am staring down an old age in which I will be physically limited, and low-income. I struggle to know my place in Jewish communal life, and twenty-five years of doing the dance and wearing the right clothes and facial expressions leave me wondering if that's all it ever was. Today, I don't feel drawn to synagogue attendance, or most Jewish rituals (though I still love lighting candles on Friday nights), and right now I honestly don't know how to be in or move through the world.

Joshua Tree National Park, 2013

 



















I believe that this is a direct result of my recent ADHD diagnosis, and all the unmasking that has come with it. I am still reeling, and wondering who in the hell I even am. I am afraid that one day my partner will wake up and tell me she doesn't know who I am anymore, either. This makes me feel terribly alone and sad. And emotionally exhausted.

I wonder if or when I might feel differently. And where I will find myself.