To all my people that be drug gobblin just to get by

To all my people that be drug gobblin just to get by
Stack your copays till they get sky hiiiigh

Okay, that’s enough, Kan-NAY. How do I summarize a summer in one post? Let’s find out.

A. is for being Motorboated by the Universe’s Anus

I’m just going to say this: I had a terrible summer. I had an awesome summer. There were high highs and then I was crying in the shower again. I am a cat with internal injuries. I say I’m going to walk it off and then crawl under the porch. I have designed my life so that no one can help me. My children will be surprised when I die at 109 because I am nigh invincible.

How did I get back? Why now? I had a tipping point. If I’m working alone, I am usually listening to podcasts, which is a very magical thing about my job. Hand use hammer; brain use ideas. I was enjoying my weekly injection of my NPR boyfriend, Shankar Vidantam, when this episode came up about getting unstuck. I was stuck. I’ve known I’ve been stuck for a few months now. Nothing creative was happening. I had never been to me.

As an aside, work often reminds me of when my girls were small and I would try to have a conversation with an adult, particularly one who had little kids with them as well. The conversations could never progress past the basics because we were constantly interrupted by something else that demanded most of our attention, it was loud, and we were sleep deprived. Work is like this, and as a result there is primarily a lot of Dude Culture happening.

At first I walked onto job sites with a bias. My logical brain told me, “Well, not all construction workers…” but I still thought I would be working with right-wing, unevolved cavemen, who are there because they didn’t know what their other options were. It’s more and less subtle than this. There are some guys, like people everywhere, who are constantly crude, and are not deep thinkers. But for a lot of people it’s a veneer. I work with guys who have college degrees, who have traveled the world, and who are screaming atheist liberals.

There’s just not much time to talk to anyone about anything interesting, and there’s Dude Culture, so the bar is low and it’s mostly dick jokes. Sometimes they talk to me about real stuff if we’re alone, and then explain to me they have to do performative masculinity in groups, or they won’t fit in. Some of them encourage me to act this way as well, but I know I won’t fit in, so I’m just myself, though I keep my mouth shut a lot. It’s complicated. I also keep an earbud in one ear and an earplug in another, so I don’t have to hear a lot of what passes for conversation. *

Anyway. I’d been feeling really antsy and stuck in life myself. Usually I have a bunch of projects and interests going, but I’ve been hyperfocused on the girls and their health for about a year now. I had the multiple whammies of probably 80% feeling depressed about what the girls were going through, which led to the other 20% being about neglecting myself and my interests. And then I had bonus depression because I felt selfish about being sad about neglecting myself. It’s fun in my head, which I have dubbed The Abattoir of Joy. I am a robot who makes medical appointments and does research and panics privately and says out loud: “HOW ARE YOU FEELING TODAY? ANY BETTER? CAN I MAKE YOU A SNACK?”

Long story long, I stepped back on blogging for a while because my personal project was my most personal things on the planet. In April Franny had a huge “mast attack” (I think of them this way now because of the amazing site Mast Attack) and health crack up and spent all of early April in bed. She was missing school and feeling so bad she was pretty checked out on life. I can relate to this feeling after my big break in Maui, and unfortunately it’s not uncommon with mast cell problems. Strudel was generally lagging along and getting worse after turning 12 last spring, which redoubled my resolve to make things better.

So I vowed to read the entire internet, summaries of studies on mast cell disorders (or the papers to the best of my limited abilities), talk to people, email people, march around to specialists until I found some who weren’t assholes, and try things as long as they weren’t magnets or diets involving one color group. You get the picture.

What is happening now? Some improvements and a change in attitude. I kept thinking about unsticking myself and I have a little reserve for that right now. I will drop it like it’s hot if there’s relapses when school starts next week though. It’s my job to launch them into the universe as legal adults running and screaming towards the first day of the rest of oblivion and not just let them go out with a little whimper like I limped out of my mother’s house.

After many years of thought, reflection, talking, therapy, vodka, ad marzipan the killer in the relationship with my mother wasn’t necessarily the mean, or the crazy, or the (later) blackout drinking/memory lapses. It was the lack of care. The universe dealt her a sick kid, and ignoring that didn’t make any of my problems go away, but it did make me go away. I’ve said this before but I will repeat it: I care about my girls, and more than that, I want them to feel cared for and believe their lives are worth improving and saving. And I want them to emerge into adulthood with the feeling that I tried my hardest for them.

What does all this yammery hand-waving mean on a practical level? I got Franny into physical therapy, with a recommendation in hand for Strudel. I’m just waiting to find out what her school schedule is like this year, and then I can start taking her. Franny was diagnosed with scoliosis for a second time, which can be a secondary effect of Ehlers-Danlos (connective tissue disorder). Her carriage has already improved and she’s feeling a lot better overall. Nutritional support via the ND is working out really well for both girls, with an emphasis on things that axe histamine in the system, like vitamin C and B-5. We’re still doing antihistamines, rescue inhalers, and histamine blockers.

Here is the attitude adjustment. Our NP left to join another institution after many years. She was always nice and well-meaning, but I was relieved to see her go in the end. She saw me through some of the hardest times and did very little for me except the same basic blood panels and puzzled shrugging. I had a visit with the NP who replaced her, because I still need quarterly follow ups to get my tired, narcoleptic mitts on Adderall. I don’t know what to do without something artificial to keep me awake and get me through a day.

For a while I was kind of dithery, like, “I think? This might be mast cell problems?” Now I’ve had the tests and enough confirmations to know. I’ve made the decision that we just go into places now like “WHAT? WHAT WHAT? We have mast cell disorder so that’s a thing you need to know.” So I did that with the new NP and she was like uhhh ok. If anyone’s ever again like, “that’s made up” I am walking out mid-appointment. I told the girls I am dealing with their medical stuff this way as well.

Okay I need to stop or I never will stop. I’ll be back to this, I know.

B. is for food that will make your teeth all grey

As always, I went to Twin Peaks with Franny and Morgan. I have a friend deficit right now, some of which is my fault, and some of which is drifting due to life and sickness. I remembered last summer that I also miss volunteering for things. So Franny and I volunteered at the Twin Peaks Festival. We worked the merch table and the banquet (since we can’t eat there), and I handled a celebrity.

I thought I would meet some people and talk with some people and just generally be in the world, and I was. I think I made beginning friends with one of the other volunteers. I’ve been kind of a ghost everywhere. A long time attendee introduced himself to me and asked me if it was my first festival, and I was like, “no, fifth.” He was amazed. Ha! Even Kimmy Robertson talked to me this year, and she doesn’t talk to many people overall. So I think I was being there.


Franny and Pete with camera obscura

Late one night in the Airbnb at Twin Peaks I told my sister all my stress and cried, it was just cracking open out of me. I try not to do this because I was raised to be a martyr and the family hero and she’s the baby, but she was very supportive and encouraged me to get back to myself and things I like. I feel like a gong went off when she turned 30 in July and now I don’t have to worry about her anymore. I threw her a surprise party in my backyard.

THEN, CHRIST, shortly after that, I saw her father (my stepfather) and his wife who I haven’t seen in 12 years. We spent about a day and a half hanging out and they met the girls and saw the house. Things ended so, so badly with my, well, childhood, and I just didn’t think I would see him again. Morgan had been telling me for years that he’d mellowed out a lot from the days of the epic fights he’d have with my mother, and that he felt terrible about what had happened. She kept telling me that she thought it would be good for me to see him.

To be brave I told myself a story, which was that my sister wanted me to see him, and I could do anything if it was important to her and I wouldn’t be scared. I think that was partly true, but that she was thinking about me as well. And it was a nice time and they thanked me for taking care of Morgan so much after our mother left her third husband and lived with me for a while. It was a little heartbreaking to leave home when she was six, and have her arrive at eleven, and see how messed up she was. For some high school summers Morgan was at my house every day and even spending the night on the couch.

When I saw him walk in, I felt my cells popping. I went cold, my skin crawled, my ears rang, and I got dizzy and I was dizzy for the rest of the day. The second time I saw him I was fine, but the damage was done. I crawled past it though, and now we can be back in each other’s lives again. I was pretty sick the day they left, so work was murder. Even my boss commented on it. “You gonna push through this?” he said. He probably thought I was hung over or something, which in a way I was.

“Fuck yes I will,” I said. “Things will be better tomorrow.”

“We didn’t know how bad things were until later,” Morgan’s stepmom told me at dinner. Understandable, since Morgan kept it pretty quiet. For one, like me, she thought weirdness was normal, but also didn’t want to rock the boat and be forced back to Illinois. She was taking root in Seattle.

And it turned out! Morgan has a career she loves and meaningful relationships. I was so happy to spend a bunch of time with her friends and coworkers and her birthday weekend to see how much they love her and how they are like family after so many years. Morgan did most of the heavy lifting herself, and she is really good at Showing Up and Giving it 110%, which is like most of success, but it was really nice to be acknowledged for the part I played too. Literally no one else on the planet understood what that meant or what I was doing and could say that. Except Morgan, and she does sometimes, which is sweet.

Now that I can downshift on FIXING ALL THE THINGS for my own girls, I’m going to work on patching myself up some. I’ve got some cool medical stuff happening I’ve been tolerating, as usual, but I don’t have to. My dentist has been nagging me forever to get my one thirty-three year old silver filling removed and have a crown put on. I saw him a couple of weeks ago and he said, “Welp, your tooth cracked finally.” I wasn’t surprised, since I’ve been clenching my jaw like crazy. I AM READY. But sad. I don’t want a crown.

There’s something else too. Strudel had a very minor cavity (as in, literally a deep natural depression in her tooth, not decay) and my dentist wanted to clean it and fill it. She didn’t need numbing but felt pretty crap after, and has been been sick and sleeping almost constantly for the past couple of days–her mast cells degranulated. I’m worried I’m going to get sick too even though I don’t need a root canal. I may just have to suck it up and be out of work for a couple of days.

I’ve been wanting to pick up painting again (a practice that predates this blog), but I go blank every time I think about what to paint or even how to start. I decided to take a drawing class this fall at a community college, so I hope that’ll knock something loose. One thing I remembered from vacation this summer is that it’s worth it to take the time to focus on something else for a while.


Orcas Island score

* A few days ago I was up on a lift, way up near the ceiling working on duct. I could hear some mudders in the hallway. One, a white guy, was talking loudly. The other guy I could sort of see on his lift was Mexican. This is relevant because in my experience Mexican guys on a site are either SUPER polite and friendly to me or ignore me. Either way, they are very aware of me and move aside if I’m coming through (as I would for them) or say hello.

It starts: “SO THIS GIRL KEEPS TEXTING ME ALL THE TIME. I’M SO TIRED OF IT. (Stupid girl voice) ‘I STARTED SCHOOL TODAY!’ YOU KNOW WHAT, I DON’T FUCKING CARE.”

My break alarm went off and I lowered my lift and climbed down. The Mexican guy glanced into the room and saw me coming, and said nothing.

“YOU KNOW WHAT MAN, I JUST NEED TO GET INTO SOME NEW PUSSY. THIS ISN’T WORTH IT. YOU KNOW WHAT I MEAN? NEW. PUSSY.”

I stepped out into the hallway and snaked between their lifts to get to the stairs. I gave the Mexican guy a little nod, since he moved his lift to let me out of the room. I glanced at the white guy, who looked like a 50-something Sam Rockwell, but busted. Sam Elliot mustache. Grizzled.

“Uhhh sorry,” he said quietly. I pretended I didn’t hear, and I didn’t CARE. I know what NEW PUSSY is. I’m married. I have children. I have a PUSSY. Christ. Own your no manners or shut your mouth.
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12 thoughts on “To all my people that be drug gobblin just to get by

  1. So much of my Hidden Brain-listening experience these past few weeks has been me going: “Oh. Oh. OHHHH it me!” Which has been nice and also validating the life choices I’m making that other people are not going to approve of.

  2. Nice to hear from you. I had a read of Mast Attack and diseases sound hellish. Glad the girls have you on their side.

  3. This is all good stuff. I agree that you should just walk out if some Doc doesn’t believe you. My new superpower is just shaking my head no when talking to people who are outright lying to me and walking away. I had a weird summer dealing with neighbors and the county.

    I started painting. I’ve only ever done watercolors and a friend gave me some oils and I’m painting on gesso’d wood. Just learning how the medium and brushes work without any direction has been v. cool.

    So glad you are back. I missed your writing.

  4. I’d been wondering about EDS and Franny, as I have it too. Your last post was so instructive about mast cell issues that I finally realised it me, and started taking antihistamines. Which seem to be making a big difference, and I’m reducing one of the more nasty pain meds. So thank you, and if you want any thoughts on bendiness feel free to drop me an email. (A bendy friend has particularly strong scoliosis, and there has been Much Learning in these parts on that.) Diagnosis as early as Franny’s is more than half the battle, and she is going to suffer so much less in life because you have been an amazing mom and got her attention.

  5. I’m sorry to hear that everything is such a struggle right now, but also to say that I think you look great in the pic above!

  6. Kathy: Thank you. I feel more like my old old self again, instead of perpetually swollen and like my head is a balloon.

  7. Hi Miss Piggy! Thanks for the comment. I’d be glad to email with you. I’m working six day weeks right now so I will try to remember to on a Sunday. I am SO HAPPY antihistamines are helping some. Weirdly I am convinced they have reduced our (me & girls, that’s not the royal our) pains as well. I basically looked at the whole list of mast cell stabilizers and started taking the ones that didn’t have corn in them!

    I’m sure you know about that EDS/MCAS/POTS triangle. Strudel seems to be hit the worst by POTS-type symptoms.

  8. Elizabeth: Wasn’t Hidden Brain great this summer? I seriously want to have tea with Mr. V and not in a sexy way.

  9. It’s great to hear from you again. I’m sorry things have been rough for so long. I hope you all get some respite.
    …I never know what to say when I write these things. I think what I want to say is that I admire you, and I’m really grateful your blog exists b/c I kind of wish I had a life like yours, in some ways? And knowing you got there means maybe I can eventually get there too. I haven’t had the exact kind of childhood you had but I have been through Some Stuff and it’s been really holding me back, so that kind of hope is important to me.
    I know hearing this kind of stuff can be embarrassing so I’ll stop there. I’m glad you have some bandwidth to think about yourself again. And I hope Franny and Strudel keep doing well.

  10. (Did I write pretty much the exact same thing on another post of yours in the past? Ooof, I hope not! Anyway, the well-wishes still stand. Maybe next time I can come up with something more original to say.)

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