T-plus three days

 It feels really surreal. Maybe that's the drugs?

I struggled with "what if I'm doing the wrong thing" all the way up until I was signing the final consent to treatment, gowned and IV'd. Some part of me is still wondering that, but I realize that's because I'm in a new and different kind of pain so my instinct is to mentally downgrade the devil you know, so to speak. (Also say hello to the high res versions of my bone spurs. It looks like they’d been shopping at hot topic for punk spikes.)

Yeah, I'm in pain. It's to be expected really. I have six screws, a titanium plate, and two chunks of cadaver femur embedded in my neck now. (And a bunch of absorbable sutures)

It took three tries for them to seat the first IV, and once I had signed my consent to treatment, I asked for something for the anxiety. I'd been crying behind my mask on and off since arriving two hours early (as directed) and I was exhausted. My last memory was around 1pm, when of a member of the anaesthesia team holding a large slightly yellowed cylinder and tapping it into the hard-won IV port on top of my right hand. The surgery was scheduled for 12:23pm, to last for about 3.5 hours. 

I have some vague recollections of coming out of anaesthesia and talking to one of the surgical team about 18th century gelatin, and carnivorous plants, while they tried to stick a bedpan under me. I was lucid enough to know that wasn't going to work and ask for a catheter, which they were surprised by but assented to ("huh, she didn't even flinch"). I know I called Martin on a phone at some point but I can't remember a word of what I said to him. I woke up a second time in a recovery bed, some time around 9:45pm, visiting hours already over. 

Covid has been surging around the world recently, so it wasn't surprising to me that the promised orthopedic ICU bed didn't materialize immediately as I exited surgery. But hours passed, and more gurney beds with highly-drugged individuals started to collect in that room as no new beds became available. Around 12:30am the nurses came to shut down the recovery ward, so those of us still waiting were rolled back to the capacious pre-op ward, where we'd donned the gowns and IVs and done final signatures before our surgeries.  

So we waited. And waited. And had some jello and crackers, and water, and waited more. And some time around 4am, I started to feel nauseated. I had just undergone a blood draw (because I guess they have to do those every 6 hours or something for monitoring?) in my foot (because, as I found out later, literally every other part of my body that had accessible veins had been tapped) when I started to get tunnel vision and cold sweats. I woke up with a nurse screaming "help help" out into the ward, my toes curled over the bar at the end of my bed, another nurse holding me down as I arched, and a third working a suction tube into my mouth as I vomited and coughed. "Do you know where you are?!" "The hospital?" I coughed and choked as they sat me up, an expelled another liter of fluid (?!?!) before the nausea disappeared. I collapsed into bed as they stripped me and wiped me down, tucked me into a fresh gown and fresh socks and fresh blankets and put an anti-nausea patch behind my left ear. I slept under their watchful eyes, exhausted. 

And that's where I woke up again, about 11am, still not in my ICU bed, but in good spirits. I sat up, I got more blood drawn, they took my vitals, I started to eat again. My surgeon came around to look at me, and over the protests of the nurses got me up out of bed and into a chair to eat. A few minutes after he'd left, satisfied that I was mobile and on the mend, the tunnel vision came back. I had enough time to gasp "I'm blacking out" before it was on me again. I apparently had a vagal seizure that lasted about 8 seconds, scared the crap out of the nurses and the other patient still waiting for a bed, and knocked me off the chair. I got to use this super interesting device called a "Sara Stedy" to get from the floor back onto my bed, and the nurse who'd been looking after me the whole time sent a stream of almost-profanity into my surgeon's voicemail box. A few specialists visited while I was exhaustedly snoozing again, but after some tests we decided it wasn't an epileptic episode, but it could've been due to some of the many drugs they had me on. (My guess was gabapentin, and they said that was possible.) 

After those two episodes I guess I got a priority bump, because around 3pm an ICU bed came free for me and I left the pre-op corner with thanks for the nurse who'd been watching me like a hawk, and the other lady who was rooting for me.  The room was private, which surprised me, and had a great view of the trees of Mount Sutro. And after the loud, dim, busy corner of the pre-op ward, it was heavenly. After that I progressed fairly quickly - able to get out of bed, get to the restroom, and walk a bit with minimal assistance. Martin came to visit me, and I ordered dinner and snoozed a bit, then drifted off to sleep. Two more blood tests later, and an unknown number of shift changes and resident visits, I was ready to go home.

This is only day one home, but I can see this is going to be a long road. I already don't like this cervical collar, and I'm worried that it's also possibly too short for me. My hands, arms, and feet are covered in bruises from failed IV attempts, and I'm still picking ECG pad adhesive off my torso. My neck is bruised and slightly swollen, and I'm afraid to look at what's under the dressings. But I got to have a shower, and I put in my contact lenses, and that makes a huge difference to help me feel human again. I can't brush my own hair yet, and the drugs make me too woozy to walk far on my own, and swallowing is difficult and doesn't feel natural again yet. I'm still coughing up aspirated apple juice phlegm, apparently sleeping in the cervical collar makes me snore, and I've got some allergy/post-nasal drip/sinus infection thing cooking on top of it all. 

But here's to hoping that this pain subsides quickly, and I'm quickly back on my feet and better than I was before. I have a four week LOA from work, so it feels like most of what I need to do is sleep and drink water, and stay away from the surging coronavirus.

Oh, and alllllllll my Christmas shopping. x_x

Self-talk

T-minus three days to surgery. I keep waiting for some Sign(tm) that I'm doing the right thing, and in the absence of such I keep second- and third-guessing myself. I am in enough pain that I have lost the ability to reason about the pain; my brain keeps going back to the following: 1) Did I do enough to try to fix this without surgery? 2) Is my pain really *that* bad? Aren't there people worse off than me here? 3) Since this happened to me, don't I deserve to suffer? 4) What if it goes wrong?

As a mental health exercise, let me break this down for myself and see if it helps.

1) Yes. This first happened in March of 2019 and you toughed it out for a full month before seeking help, then you spent four more months getting back to 99% functionality, all without knowing that this was going to happen again. There were two more levels waiting to go. 

2) Yes, and this is bullshit medical-care-rationing thinking. You are in pain and thus you deserve treatment; you don't need to compare your pain to anyone else to justify getting it. You're having trouble with word-finding, you're having trouble with names, and focus and concentration are beyond you. These are all signs that things aren't going to get better on their own. Sure there are kids starving in Sudan or something, but nothing practical you can do is going to change that, and putting everyone else who suffers before your own care is not actually helping them or you. This is a trauma response. Putting others before yourself here will not make you a better person, win you approval or accolades from a distant theoretical authority.

3) No. This is the body you were granted for this incarnation. Part of the experience you're having is that of watching Time change it. Remember how you felt exactly this way when you got your first crown molar? How ashamed and grief-stricken you were that you couldn't keep your teeth in exactly the state they were when they first cut through your gums? And now it's nothing? You won't ever be the same, but Time was going to ensure that for you anyway. It's just not quite the not-the-same as you'd originally envisioned, and while it's natural given your upbringing to grieve that somewhat, don't let naturalistic fallacy swallow you whole. 

4) Even if it goes wrong, it will help. UCSF is world renowned for their Spine Center, and they're where everyone else goes when some other doctor fucks up their procedure. If Something Happens you'll be under the best possible care to correct it, even if it means more surgery. You're (relatively) young, with no serious underlying health conditions, and should heal quickly. You have a team of professionals on your side, and (gross that I have to write this, thanks 'Murica) the money to pay for their care. You've been in pain for about the same time that they expect you to need to get back to normal; that's more than enough time sacrificed on the altar of needless-pain.

This body is my vessel and I need to heave down occasionally. I will feel joy again, someday.

Real Fear

I am so scared.

After much wrangling with insurance, we're doing a 2-level fusion at UCSF. Anthem wouldn't approve a synthetic disc along with the fusion, so we're doing less to spare my mobility, on the promise they made that if I still have pain they'll approve a disc in a second operation. December 15th is my surgery day. That's a week away. I have an LOA set up with work. I have all the moving parts figured out and scheduling bits in place. And I am scared.

I am so scared I've been randomly breaking down into sobs, for minutes at a time. Hyperventilating, ugly cry, scared. Started turning on music when it happens so I don't freak out the downstairs neighbors. We're at four times today. Nothing like snapping-to and finding you've been sobbing on the kitchen floor in the middle of the day while your lunch cooks to make you doubt your own sanity.

What if I'm doing the wrong thing? What if it doesn't work? There's so much that's out of my hands.

I have never been scared on this animal, bodily level. I'm sitting in here piloting this meat suit through daily tasks while it shakes and sobs and I have to tell it to blink more so I can see what I'm trying to do and I am just... is this still a healthy level of compartmentalization? Am I doing this wrong? Is this breaking me? (Was I broken beforehand and just hadn't quite noticed?)

I'm reading through the pre-surgical instructions and putting them on the calendar and I can't stop crying. 

I can't imagine this hurting less. I am grieving the loss of my, I'll admit to this vanity, my pretty neck and collarbones. I'm scared that on top of this, it won't help - I'll still be in pain (in more, different pain) and will have to get a second surgery anyway. More scarring, more pain, more loss of the OEM parts I had.

And then some part of me recognizes that I am *in* pain right now, and despite my brain's insistence that I'm not in real pain, not really, I actually am, and that's why this (including the random crying jags) is happening and that's why I need this surgery. 

So I took one of my baby tramadol and I am going to go to sleep now.

No going back

 I've been consuming a lot of historical fiction recently, discussing it with other nerds, and all of it points to one thing:

You cannot heal to-first-principles what has been utterly broken. You cannot un-burn a forest. But you can use the ashes as fertilizer to grow something better.

We were talking about Babylon Berlin (which is beautiful and dark and amazingly well done, well worth watching),  and the fall of the Weimar Republic, and I think it has some strong messages for the incoming administration. 

We can immediately reverse policies, but if we blindly put things back to how they were, given the damages done in the world in the intervening time we're going to find perverse incentives in record time and it'll be egg on the face of everyone involved. We should be taking this time to see what stagnant patterns have been torn down by this disaster of a government, of a pandemic, of a year, and see what we can build back, better.

I am heartened that that's the actual campaign title of the incoming Biden administration. We cannot make America great "again" for it was never great. But we can take the things we've lost and use them to fertilize a greater good and a greater equality.

The world has changed

All I knew
This morning when I woke
Is I know something now  
Know something now I didn't before 

I woke this morning to the sound of a conch shell somewhere on the block, blasting three times. In prayer or thankfulness, I believe. It wasn't until a half an hour later when we heard honking and cheers that we woke up enough to roll over and look at our phones and read the happy news.

It's like rising from beneath a suffocating load, after four years.

In November of 2016, I alighted from Caltrain into the arms of someone who did not understand why I was so upset, but who held me and told me (wrongly) that everything would be okay. Even my LJ ramblings from the inauguration show how terribly bad things had got so very very quickly.

Now I feel like I need to make a to do list for him, for them, for the world, of all of the things that need to be fixed and set right.

We need more voter re-enfranchisement; protected voting rights; to un-gerrymander. (This last one we could legislate algorithmically, I feel.) We need to write down and make a legal requirement all the niceties of presidential behavior that we took for granted: they must disclose their taxes, they must divest themselves of their business assets, they must have a transition plan and team, they cannot appoint cabinet members with a clear conflict of interest, they cannot appoint supreme court judges with less than six months left in the term, they cannot. We need to undo four years of batshit insane executive orders: roll back halts on diversity training, stop making statements about the preferred architecture of federal buildings, disallow ridiculous tariff changes and begin negotiations with our trade partners. We need to put into constitutional law some of the items that have been otherwise only legal precedents - marriage should be a right not a forbearance. We need to fight COVID, rejoin the Paris Agreement, tackle the giant holes punched in our government and begin to mend our relationships with the rest of the world. We also need to mend our relationships with the rest of America - stop demonizing the red states and their voters, and make sure that their concerns are heard.

Every item that concerns me, there's a plank for that. (But the anxious doer in me is still making and revising to do lists that nobody in power will ever see.)

But... it's a welcome change from the nonstop grind of pain and fear of the last four years.

---

In other news, the third time was the charm. My appointment at UCSF's Spine Center with Dr. Berven left me with a sense of relief so intense I cried in the office (and alarmed the poor student who'd been working with me - she thought I sounded so in control of everything, hearing that I was looking forward to a surcease of intense pain was a surprise. I'll take it as a compliment.) We're going to try to get my insurance to approve a hybrid approach: two titanium discs between C4-C5 and C5-C6, and a single-disc fusion between C6-C7. This means we're putting a plate only between the vertebra that are functionally between my collarbones, and which normally have the least range of motion. The hope is that, if approved, this approach means that I'll have almost-normal range of motion when we're done.

The surgery pre-op reading is terrifying. I guess I need to write a will beforehand? Any neck surgery is scary but damn, "we could nick your carotid artery and you might die" is... eye opening. There's always the possibility of nerve damage, but also damage to the tendons, to the vocal cords, the trachea and esophagus - difficulty speaking, breathing, swallowing. There's a possibility that it goes poorly, and that I come back in six months, a year, five years, to get it re-done. There's a possibility that it doesn't work, and they have to do something else. I'm scared, but also... I know myself enough to know that I'm getting bored at my current employer, and if I jump I may not have insurance, or good insurance, where I land. I'd like to have this taken care of.

Some part of me feels like I ought to get Lasik after, and just be the best modern cyborg miracle I can be.

Keep walking

 My step-grandfather passed away peacefully and unexpectedly in his sleep on October 21st. We weren't close, and he wasn't functionally with us the last eight years or so. I have not really known what to say that isn't condescending, trite, or worse than saying nothing at all, so after two glasses of wine I wrote that in a card with some memories and stuck it in an envelope addressed to my grandmother. 

I think my disc is re-absorbing itself, because my pain is way waaay down. I mean, not gone, but down. I still have a lot of pain sleeping, and I don't have my full range of motion or feeling in my thumb back. But it's much more predictable and my shoulder hurts a lot less.

I mean, it's either that I'm getting better, or I'm getting inured to the pain?

Either way, I'm thinking about maybe trying some small yoga and maybe trying to get back to sewing a bit?

I've been waiting for over a week for the CPMC neurologist to even get back to me; at this point I'm seeking other resources. I left a message at UCSF, because I don't want to be pressured into what is essentially a life-altering surgery. That said, I'm at my Out-of-Pocket maximum for the year right now - it's worth doing while I've got the option and have coverage, especially given the horrifying prospects for health care if Things Go Poorly in the upcoming election. \

I've got a two page Google Doc of questions for my follow-up with the non-dud doctor, but I'm still super scared about this. Any time you have a surgery where the disclaimers start with "we could nick your vocal cords and you might never speak again, we might fuse your neck so that it's permanently pinching a nerve, and also we could nick your carotid artery while we’re dicking around in there and you could DIE." I keep seeing the xrays with two screws per vertebra and it just makes me cringe.

Work is going. I feel so scattered right now, it's nice to have something that's just sort of cooking along there without my help. It would be really nice if just one of the many things that're taking up brain space would resolve - the DPO sale, the acquisition, health stuff, therapy, covid, the election, the back stairs...

Regret

The orthopedist was brisk and bright and professional, and told me in no uncertain terms that he didn't think any of my pain was from an orthopedic injury (thank god?) but that it was more than likely all from my neck. I told him I was seeing a neurologist in two hours, and he asked if I was seeing someone in his practice. I told him no, and fished the ream of printed forms out of my bag to catch the name of the guy I was seeing. The orthopedist hmm'd, but would not say more, but left me with the names of three other neurologists, including one in his own practice.

But he was kind, and he said (probably noticing the wide eyes and the dampness at the edge of my mask) that I was going to be okay, and that I would get better. I cried a lot while he was printing out those alternate referrals. Was it the early hour? The prednisone? Was it just finally having someone who knew what the fuck was happening? I don't know. But it was a nice bulwark against what came next.

I expected it really. The ream of poorly photocopied forms was a clue.

When I walked in to the neurologists office, an 8x8 space stuffed with chairs, there were already four people present. And although I'd filled out literally every form in advance and hand carried my CD with the MRIs, the check in process was as painful as possible. Insanely unprofessional. I was then left in an exam room for 45 minutes - more than long enough to note the slovenly and utterly unhygenic surroundings.

The doctor, when he arrived, looked bored or drunk or possibly both. And although he'd had, presumably, 45 minutes to look at my file and MRIs, he asked me a bunch of vague and demanding questions, including if I was married, then with a noise of disgust told me to put on the paper gowns for the exam. I've never seen a more shambolic excuse of an exam. He was bored, he was just going through the motions, he literally tossed the exam implements on the table once he'd used them, then picked up my clothes to sit on the chair closer to the exam table and tell me that he was recommending an epidural but that at some point I was going to need surgery.

I could not nope out of there hard enough. By the afternoon I had one more appointment (Monday) and a new referral for someone in a more professional organization, to try to find out what my options are. So, that's a few days I've lost, but I also feel a lot more in control of what's going on.

The chiropractor yesterday was also helpful - she said that the MRI photos I showed were definitely bad, but not even the worst she'd seen. So there's pain still, but there's also hope. And now I mostly am filled with regret for not paying more attention to posture in all these years at the computer.

'Significant Findings'

 I spent several boring (and unexpectedly painful because spasm) hours inside a loud vibrating tube yesterday. I then spent several more last night going through the DVD they burnt for me and looking at MRI pictures. Hello, more royalty-free Halloween decor, right?

But, while I have only enough anatomical training to get myself into trouble, certainly not enough to interpret an MRI, and also only the free "lite" version of the MRI viewer app, there were definitely some things that looked to my untrained eye, um, not good.

Today, in the middle of a meeting about my company getting acquired (oh yeah, so um that happened since I posted uh, six days ago) I got a call from a phone number I recognized as being the "outlet" number for my doctor's office. It was my PCP; she left a voicemail that said drop her an email and she'd call me back. 

It's never routine or good news if the doctor wants to give it to you in person. I left a message and she called back just as I was sitting down to eat lunch.

There were "significant findings" and as she read back the neck diagnoses ("moderate disc extrusion", "severe central canal stenosis", "foraminal narrowing") my hands started to tingle and I realized that for the first time in almost a month it wasn't the pins-and-needles pinched nerve feeling but the clammy panic tingling. "So it sounds like you're seeing a specialist tomorrow... two of them? I'm really glad. Neurosurgery was the right call, I know you weren't sure, but they'll know what you options are." 

The shoulder diagnoses after that were almost routine by comparison, and while scary, a certain amount of Googling revealed that about half of the narrative findings meant "this body is over the age of 30", while the rest are scary  ("tendinosis", "Superior labral tear", "adhesive capsulitis") but seem to have knowable solutions or fixes. And yeah, just enough anatomy to get myself into trouble means that I probably, while trying to fix a nerve thing that cannot be fixed, stretched myself into an actual cartilage injury. 

I am fucking terrified.

This last month has been a haze, more so than the last seven months of corona quarantine. I hurt. I hurt so much and in so many different weird and annoying ways that I've stopped bothering to catalog them and just go for the pain meds. This is unsustainable. I worry about my liver and kidneys and stomach lining and worry about the things I might be breaking while I've numbed the lot of it away. 

But also I worry that I will never get back to a "normal" again, where partner dancing, climbing on art, swinging a hammer, doing things with my arms, just generally being strong and fit, is really possible again. I'm staring down the barrel of a lifetime of "pain management" rather than healing and relief and I am trying so hard to convince myself that that's a life worth living. It's so hard in the middle of all of this, when we've all lost so much, and when the mitigations for the pain could compound the loss of leisure.

It's been hard enough this last month when I really want a tiki cocktail for dessert, trying to recall how much tylenol I've had and if I should just skip it. And the comfort-sugar cravings have come on in force, which sucks because I got to see quite plainly in the MRI how thick my subcutaneous fat layer is now. 

I can't focus at work, writing hurts my wrist, I worry that reading makes my neck issue worse, and I've run out of internet that I want to read. Politics is a cringeworthy grind I'd rather hide from, climate change is real and the heatwave here is about to cause some folks on my list to get their power cut to try to prevent another firepocalypse, and I'm finding that I really just want... to curl up somewhere... and wake up six months from now.

But first I have an 8am orthopedist appointment, God help a night owl.

Two cards down

Another interpretation of The Tower is the human spine - the ivory tower. The Tower is a card about... structural failures. Let that sit with you a moment. 

Then let me tell you that about 18 hours after my last post I was sitting in the ER (alone, due to covid restrictions), because after twelve days, the neck and shoulder pain was getting worse despite flexeril, then valium, then robaxin, which did absolutely nothing but make me groggy. I got an IV of toradol and another baby dose of IV valium, and a handful of prednisone. I also got an XRay and CT scan, all showing absolutely nothing out of the ordinary with my rib, collarbones or shoulders, but showing "osteophytes" and disc thinning in my neck, which might be why this keeps happening.

Just in time for Halloween, here's some skeleton parts

Prednisone is magic. I woke up the next morning feeling better than I had in weeks, in sickening parallel to a grotesque politician I could name. (I have not yet gone on any all-caps Twitter rants however, so I think I'm doing better than he.) But the dose is a tapering one, and the comedown is apparently predictably terrible, and now on day four, it feels like it's um, starting.

I now have an appointment for an MRI and a neurosurgery consultation. I'm a bit freaked out about what all this means. I'm not better yet, I might need surgery(?!), I haven't started physical therapy yet, and along with that I still haven't gotten the final billing for the allergy testing and CT imaging for that earlier this year, so adding an urgent care visit, emergency room visit, and three more imaging types to that sounds... financially terrifying.

But... While the DPO did not go well on day 1, nor 2, 3, 4, etc etc etc, yesterday, a full week later, I woke to the pleasant surprise of having sold some stock at my lowest acceptable price. Today, as recompense for the failure on day one, I was allowed to sell some more at a slightly higher price (regardless of the actual market price). It's not a lot of money after what I'd been hoping and dreaming of, but it's also not nothing, and it's not the end of my holdings either. 

It feels both like, and utterly unlike a windfall; both sudden money that I didn't quite plan for, but also money that is shaving little flakes off a chunk of my life that I stored away like pemmican in a cellar; it feels like the Little Mermaid watching her voice float away, like Wesley watching years drop off his life in that torture machine. It is a piece of myself that's gone now, and it didn't do what I'd hoped, but at least i got something for it. One way or another though, it's an ending to something that's gone on for years, and its decay will hopefully bring some fecundity.

(I mean, it also feels very much like not-a-windfall because no money has actually hit my account yet. And I worry that it'll end up being "enough" to keep up with the medical bills and not enough to ever get *ahead* per se.)

But things seem... to be getting a little better.

Another long-open tab

 I forget to write among all this chaos. I think I can be forgiven.

On September 23rd I woke up somewhere around 5am because of a searing burning pain in my neck. It's developed into another rib-subluxation-spasm like I had in March/April 2019, except this time I'm trying everything I can to fix it fast, and seemingly, in vain. Seeing a chiropractor *that day* didn't help, because the muscles were locked up and holding it in place. Seeing him repeatedly didn't seem to help either. A week later the doctor prescribed PT and massage therapy - I was able to get one hourlong massage and the next availability is October 13th. The PT place hasn't called me back and I'm at something of a loss about how to find any more massage therapists who are open for business again.

I'm in pain, my right neck, trapezius, shoulder blade, lat, deltoid and upper arm are sore and in spasm, and my lower arm has shooting pain and some numbness on the ball of my thumb. And the best I can do for all of this right now is to take drugs to numb the pain so I can sleep, and hope that the muscles will stop spasming. 

For anyone counting, this is day 11. I took all last week off because of various Things, which is what I'd meant to write about when I first opened this tab in September.

My acupuncturist, who has this terrible habit of trying to push me into letting her treat more than needs treating, said this feels like an emotional injury and for once I have to agree with her. As she was working on the axis of the knot, I found myself sobbing. Not because I was sad or angry or scared or in pain, though I was all of those things, but because that's apparently what's bound up in this muscle/spine issue.

The Tower and Death had been chasing me in my readings for the last few weeks, and I was beginning to be really truly afraid. I put my earthquake kit near the back door, because the Tower has specific meanings particular to California. I wrote up a basic, not-very-professional will. 

But it is impossible to know which of the things in the last two weeks either of these items refer to, because there's a lot:
- the (finally!) public offering of my first startup, which was not particularly successful, which suffered greatly from technical issues and has yet to net me a single dollar; 
- the first house we found in six months searching that we could see ourselves living in, and which we put an offer on which was not accepted;
- attempting to resolve interpersonal poly friction with a mediator-therapist and being rebuffed for weeks;
- the still-aching loss of a promising secondary partner;
- the twinge of nihilism that warns me it might be time to start looking for a more fulfilling job;
- the continued California fires;
- the lack of vacation and subsequent burnout exacerbated by said fires;
- the shitshow of US politics;
- the particular developments of the inmate of Walter Reed;
- the continued ravages of Covid in the US, just, you know, in general;
- climate dread.

Today the air cleared enough (AQI of about 70) that I felt safe going down to the beach again for some fresh air. This year has been about teaching us, the hard way, how much we took for granted; the ability to travel internationally; the ability to see friends; the ability to touch those who aren't within our own households; the ability to travel locally and enjoy the forests; the ability to eat and drink food we did not prepare; the ability to eat and drink outdoors; the ability to go outdoors without protective breathing equipment, and the list goes on and on and on...

I experience a sort of release-of-grief each time we get back something that's been taken from us. The first time I stood in line again at my favorite coffee place, I found myself weeping under my mask and not quite understanding why. When my favorite Indian place still delivered, it was the same. Seeing the farmer's market continue, the adorable English tea room nearby open, eating outdoors at our favorite pasta place again, I wept. When my favorite ramen place reopened I sobbed. When I heard the Parks Department would continue building the ferris wheel for the Golden Gate Park 150th anniversary I broke down in tears again.

I am holding all of this grief because there is nothing else to do with it, and it does appear that it is damaging me.

Marmalade skies

 This morning I woke in a planned darkness for an early meeting. The sky had been clouded and smoky the previous day, and the light was a dull orange at 6:30 in the morning. I made coffee and signed in to a presentation about the end-stages of a project that I started in 2009, and which I hope will finally bear some (if bitter) fruit.

The sun rose, but did it? The streetlights flickered off, the fog lightened... and then began to darken. 

By 8:00 am it was noticeably darker than before, and by 8:30 the street lights flickered back on. The light took on a hellish quality out of a movie. I tried again and again to capture it on my phone, but the phone was too smart - white balancing the grim ashy orange color away.

The entire state, inundated with smoke from the ongoing wildfires, was blanketed with multiple layers of airborne ash and soot. By 9am, it was as dark as 9pm in my apartment, and I could not stop weeping. I ate lunch with the lights on, under a skylight that let in no light. I stood on the back porch looking out on a world I didn't recognize.

Paradise is burning and we need to pay attention.

And yet I don't know if we have enough time to stop it before it stops us.

She said

 "I just want you to be safe, and happy, and healthy and strong. Even if I'm not there." 

He sobbed unexpectedly, a single barking sound.

But what she really meant was: "I love you."

The Protocol

Bring a handkerchief if you can. Fabric dries, and on balance, is easier on the eyes than paper.

Maintain your dignity while it's happening. If you have to emote let it fall inward, be self-contained.

You are a rock on the shore, and it washes over you. Let it pass. Condense inward, harden yourself into a diamond inside if you need to. 

Uncurl when it's over. 

Agree not to see each other for however long. This does not need to be an indefinite period.

Call, text, or message a friend as soon as you're alone. If you're driving home, let it be before you start. Let them know where you are, and where you're going.

Go home. (If home is worse, find a friend to stay with.)

Let the first thing you do after arriving home is drink water. You can drink or eat anything you like after, but the first thing past your lips on arriving home must be water.

Does anything smell like them? Take it off, put it in the laundry. Does your bed remind you of them? Change your sheets. Now. I don't care if it's 2 am or 9 am or 3 in the afternoon. Do it now.

Find a blanket. Curl up and take a nap.

Check your living spaces for things that remind you of them. Put those things away, however you see fit.

Eat or drink something sweet. Take about 400mg of ibuprofen or aspirin.

Remove them from the requisite social networks, calendars, and long range planning. Put them on a 30 day mute where possible. 

Take another nap.

Drink at least another liter of water. Eat some comfort food.

Masturbate. Shower. Sleep.

Find a project to work on for the next week or so, and distract yourself as best you can. Make plans when you can to be with people (even if virtually). 

On the day after, chop wood, carry water.

Why weep

 It's been a bit.

Overall, I cannot complain. And yet that's all I want to do. 

I'm in this weird place where everything should be fine, but I'm just feeling so anti everything. All the things that normally sustain me in the real world are moving online and I find that they just have no savor at all there. Is it work? Is it me? Is it pandemic? Is it anxiety?

I'm sitting here writing around the edges of what's really bothering me, and it's hard to get it out so consider this bit above a preface.

I almost didn't survive 2017. I had (have!) the love of a wonderful man to prop me up, and it's been hard to admit how close I came to... whatever I would've done. I didn't, and I didn't really get *that* close in the end, but there were moments when I was thinking about how broken I was (am?) and how little point there was (is?) to living. And in those moments it was hard not to see a continuous trail of how I've bent and contorted myself to meet the whims of men who do not deserve me, in order to get their approval. What happened to the girl who stole the heartthrob of summer camp one year, who saw a boy in passing at faire and took him for her own... not once but twice? Where did the girl who owned her own sexual desire go?

I had the most surreal experience this weekend. Saw a painful ex in a photo feed, and did my best to delicately enquire if I should unfollow for my own comfort. The friend said he was now housemates with said ex, but he knew the ex and I had dated and it ended poorly. My reaction was that I must've drunkenly told him about it at some point in the past, but no - he said he'd heard about it from the ex's current partner. My reaction was to brace myself for impact; nobody could ever even want to be friends with someone like me after having a Laura-breakup recounted third-hand. I can imagine how each man I've dated and stopped dating has somehow blamed me; and for several I don't have to imagine because they told me to better twist that bitter knife.

But I was wrong. The ex's current partner knew about me because... the ex knew he'd been horrible to me and told her as much. That dislodged something sharp in my chest that's been rattling around wreaking havoc for the last few days. 

So here I am drinking bourbon on the living room floor and weeping, and writing about it.

How many men did it take to break me? We talk about the "body count" of a slut, but I wrote once long ago about how every single one takes a piece of me away with them. How much of me is left? How many scars upon scars are there, how much of me is real anymore?

There was the one who didn't want my love; the one who wanted it but only if I gave him everything and took nothing in return; the one who loved me back but rightly ran to face his own demons and left me to face the former; the one who couldn't see me for who I was; the trio of spawners in their succession - one who thought I was too young, one who thought I was too fat, one who thought I was too fat and too old; the one who couldn't face what he wanted from me; and the one who wanted and also gave nothing.

I have gotten by all these years by erasing myself from their lives, their bodies, their heads, their beds. Silent, like a secret, asking nothing in return, inoffensive, transparent as a breeze. Feed me the crumbs of your regard and I am your Echo, trailing voicelessly behind.

Where am I, when I am not reacting to layers upon layers of trained-in him-pleasing? Who am I anymore? Where did she go?

I didn't expect to find, three years later, that I am still so broken - but I suppose it's to be expected when you never take care of other wounds and simply pile more hacky work-arounds and compensation around the butcher's bill of broken parts. 

And how much of this is my upbringing? How much is that I've bent myself over backwards for decades to please my blood kin, and when that was impossible sought others who I might have better luck with? Why am I trying to fix everything for everyone?

I had a Silicon-Valley-conversation long ago, with someone far more well-adjusted than I, about why I would never pursue eternal life: my desire for my own annihilation is too strong to contemplate eternal life with anything more than horror. Why would I sign up for more of this suffering? (And to my lack of desire for children - why would I condemn another soul to join me here in it?) 

When do I get a break? When do I get to feel whole, and purposeful again? When will I not be fighting my own body, my own brain, anxiety, the capitalist system, greedy other humans. My legacy can only be something small in the end; a terrible place made - if only temporarily - slightly less terrible. I cannot take care of myself but at least I can nudge the threads in my network towards happier, stronger, better. I can do good works now, regardless of if they'll be remembered when I'm gone and that must be enough. 

But here I am, an avowed terrible person, still taking every little thing as a personal attack. Nothing feels safe, nothing feels secure, even when I know it to be so. I feel so utterly incapable of joy right now, and it's a bit of a spiral. I don't want to pursue joy for fear of rebuff, so I'm scolded for hiding.

---

I'm looking forward to getting away from this malaise. A few days of sunlight and trees, fire and dirt, and no more of this ceaseless clammy gray.

I've had this tab open for three weeks now

...trying to start a post.

I'm surviving, but I'm not doing well.

Collectively, the US has decided that since it can't coordinate a response, the only way out of this mess is straight through the meat grinder. Lockdowns are partially lifted, infections are spiking, but there's no going back now. Our best hope appears to be to get in line, get it while there's still hospital capacity, and survive.

So here we are, four months in, with no answers and no firm date to look forward to.  (Except haircuts, allegedly coming July 13th.)

It's hard to write about how I feel, because the overwhelming dread has been replaced with a numbness, interspersed with random crying jags. It feels like those nightmares where you're running away from something, but the harder you run, the stickier and more gelatinous the ground gets, until you're exhausting yourself to move at all and the thing you're running from is catching up behind you and...

I'm told that this exhaustion is called "allostatic load".  It sucks in normal times, but I think it's really starting to wear on me doubly around now.

Housing is scary. My landlords went from shitty-but-sure-whatever, to hostile over the course of a few weeks. We're now looking to buy a place. This is not *decreasing* my stress level by any means.

I find myself getting into an anxious-avoidant media consumption loop, and it's sapping my productivity which increases my anxiety. I feel like I need more time off and I feel guilty about it, which makes me feel bad, and I feel bad for feeling bad; whenever I start having meta feelings you know it's becoming a problem.

Work is... work? We're hiring a "lead writer" which... I can't even describe the fear that goes into this process. We're trying to work while the US slowly collapses into a fascist regime and it often feels like polishing the brass on the Titanic, but possibly also looking into a deck cannon.

I should stop there and try to get some sleep. My circadian rhythms are entirely shot, and I'm worried I could be getting sick.

Object Permanence

My boss ordered me to schedule time off, and to put a walk outside during daylight hours on my calendar. It's been working; I've gotten out, and though focus is still like trying to contain and recollect a bucket of bouncy balls, my mood has softened a little and I *feel* better generally.

I've been walking from my apartment at 20th and Judah down to Sunset and back each day. If I have time, I'm sometimes going to Andytown, the last coffee shop open around here, for a slice of something like normality. They're a few blocks from the ocean. Tomorrow I think I'm going to go all the way down to the beach, find a sand dune to sit on, and just not be here for a bit.

While I walk, I listen to music. Not because I want to, but because it makes the brain weasels shut up for a bit. I realized, and this is perhaps a sign of something neurodivergent about me, that for the most part I've lived my life in silence since May of 2017. It's honestly not great for me. Most people turn on music or the radio or something, but I realized I don't feel the need to do that because there is always a snippet of something or other running on an endless loop in my head. I'm not sure what exactly changed. The breakup was traumatic, but... was it so bad as to permanently alter my brainmeats? Maybe? Or is this one more thing that points again to "perhaps you should get assessed for ADHD, you nutty hyperfocuser, you."

While I walk, while the brainweasels are drowned out by pop songs, I finally have the chance to think.

It's really strange how fast all of this has become routine. It's also really strange how thick a layer it is, of "feels routine" spread over a fast-moving current of terror-fear-grief. It's amazing how fast we all went from our normal lives to standing in line for flour and eggs, to cooking with what we've got instead of what we want, to staring out the window and doing all of our social interaction mediated by an electronic service. And yet, almost anything will make me cry right now. Not just eyes-watering, like my normal emotionally-close-to-the-surface self, but sobby, streaming face, uncontrollable ugly-cry.

... Okay and there I go again.

On Monday March 16th, when Mayor Breed was making her announcement along with the six other Bay Area county leaders, I was in a grocery store. It was a remarkably quiet, but tense store, and as word got out that we were about to go into lockdown, people started *jogging*. I realized, standing in line, not knowing what was happening or what would happen, that I was shaking, and my chest felt tight. 80% of the way into a panic attack in a grocery store, but I also realized that if I lost it and started crying, it might crystalize the situation and make things considerably *worse*. I waited in line, shaking. I paid for my groceries, got into the car and drove home. And as soon as the garage door closed behind me, I started to sob. It took me a good few minutes to stop, and I've long since realized that when I start doing this, there's nothing I can do but hang on until my meatsuit is done with it.

I keep thinking back to the Tom Hanks movie, Captain Phillips, and how everyone was amazed at the lifelike depiction of comedown-shock or safety shock. I feel like this is what I'm getting, in bits and blots, any time I acknowledge what's going on outside. At 7pm this evening, I heard a bunch of weird sounds outside; when I realized that it's the "applaud for our medical workers" thing I lost it and had to go inside. Fundraisers for the things that I love are making me cry. I donate, and it feels pitifully small and insignificant, never enough, and I'm afraid for them, and I cry.

But walking, in the afternoons, it all drifts away for a time, and I have to thank my bizarrely wired brain for this one bit of peace. I think we're all waiting in a state of trusting object permanence. Object permanence is something we learn around 6 months old, which is that things continue to exist even though we can't see, hear, or otherwise sense them. In the bright sunlight, walking in the chilly April sea breeze, I can forget that these things are in danger, and I can revert to how I've always been: I trust that when this is all over, I can look for them and they'll be back. I can't see them now, or drink their drinks, eat their food, listen to their songs, watch their dances, hear their speeches and performances, feel their care, but I can trust that they haven't gone away forever.

But I don't know if that's true.

The good news is that San Francisco seems to have flattened its curve; our hospitals are seeing huge ramp-ups in covid-19 patients, but we haven't (yet?) gotten to the point where we've got more sick people than capacity for them, and the current modeling seems to predict that... we might not ever get to that point. New York, on the other hand, is loading refrigerator semi trucks with dead bodies. New York is being hit hard, and fast but I wonder if this means they'll see the peak and begin to recover faster? San Francisco's estimated peak date is 24 days from now; I worry that every little thing I love will begin to wither on the vine, sustained only limpingly for a few weeks by our collective charity before succumbing to greedy landlords. People are thinking about the tyranny of landlords right now. I can and still do hope for some sort of centralized edict of rent and mortgage pause and forgiveness.

The centralized response has resembled more of a chaos-monkey script than an actual attempt to be helpful. But in contrast to the grandstanding, showboating, and profiteering of the current federal administration, we're seeing the seeds of a new federation, new cooperations between governing entities. It gives me the tiniest sparkle of hope.

Everyone wants to find something, anything, that they can do. We've got hundreds of people making masks, every university and makerspace is 3d printing ventilator parts and making homebrew DIY PPE, anyone with contacts in China is desperately trying to import supplies to distribute to hospitals, people are organizing in the neighborhoods to protect the vulnerable, organizing the feed the front line workers, and just plain ol' organizing (fuck yeah, bring back the unions). There is a real possibility that this crisis will help undo the distancing, disconnection, and suspicion of one's neighbors that social media (and its manipulators) have wrought, even while we're standing 6 feet apart, prevented from hugging or singing together.

And that's an interesting change as well - when everyone is apart, everyone is together in being apart. I've attended a bunch of digital events with friends I never get to see; geobreakfast, classes with my favorite yoga teacher who I haven't seen since 2014, impromptu jazz concerts from musicians I'd never heard of until now, livestreaming zoo animals, plays, concerts and productions that I'd otherwise never get to see in person.

I have to believe, for now. There's no use and no sense in breaking down until after the damage is done and we're safe again; only then can we take our grief and rage and turn it into something productive.

Fear

They say that we're living in historic times, and we should journal.

Well, okay. It's been literally a decade since I fell so hard into work that I forgot to write, and I forget how much it feeds my soul. But this has been hard, so hard, and it's not making it any easier to write about.

Let's start with anxiety mixed with survivor's guilt: I still have a job, I can still pay rent, I still have healthcare and groceries and I can pay bills and my home is pleasant and lovely.  I do not appear to have contracted the virus in the many pre-order activities we did.

We're now approaching a full month of shelter in place, and while I find that I'm starting to finally hit my stride in taking the time I need away from work, I'm also finding that the fear and waiting is ramping up, not down. The list of things I want to keep alive and somehow preserve keeps growing. The number of places and services, events and providers who I want to support is growing longer and this doesn't appear to be stopping any time soon. I am afraid that so much of what I loved in the last few years will be gone when we all are able to poke our heads out of hiding. I am so scared, and so overwrought, almost anything will make me cry and I *cannot* seem to stop.

And I'm not even on the front lines. I can't even imagine what's going on for my friends who are healthcare workers, delivery drivers, other essential services. I feel helpless and useless and terrified, and I see all the dreams and plans I had, that others had, foundations cracking in slow motion as the rentier class demands its pound of flesh, crumbling a little more to dust each week. What the opera, theaters, the little independent movie house that serves truffle popcorn, of our favorite Indian places, the all-beef ramen shop, our favorite coffee shops, the tiki bars we've come to view as home? What of the sweet lady who cleans my house, my acupuncturist, chiropractor, the fine arts museum and the science museums and the MOMA, the botanical gardens, the antique fair, the bakery that makes the amazing cinnamon bread, the coffee shop that holds kink events, the tech writer conference, Burning Man? What of the home of our own we'd thought to buy? What if it's all gone when we reemerge?

I am sitting here adrift, despite my own comforts.

Life in the time of Coronavirus

On Thursday morning, my CEO sent a Slack message to the company ( 🙄) telling folks who hadn't already started for the office that they now had the option to work from home, and that, from Thursday on, we were encouraged to work from home. On Thursday afternoon, my team waved to each other and said "hey, see you in two weeks."

We worked from home Friday, and it was fine. We worked from home Monday, and it was fine, but the stock market kept butting into everyone's day. Today, Tuesday, my new work-ordered monitor arrived, and I have Coronavirus alerts coming into my feed every fifteen minutes or so. (The stock market, showing what feels eerily like Gibson-predicted instability, appears to have spiked up in recovery, only to tank again after hours. I have to wonder about the volatility of the markets since 2016. Are we being tinkered with by forces from alternative continua?)

It's hard being here right now.

Since my last blog post here, I've settled into City life. We've gone out, we've stayed in, I haven't made any new friends per se, but I've been happy and contentedly active. In the past two weeks we went to the SF Symphony twice, visited our favorite tiki bar a few times, gone to a lecture and movie, and did a number of other social things out and about in the City. And now we're all waiting, fretting, to see if we're part of the 14- or 24-day cohort of covid-19 incubation. Because we know that, like the killer in a horror movie, that it's out there somewhere, and also like a horror movie, not everyone is going to survive this.

And yet it's spring. Last night was warm, and the supermoon hung over Mount Sutro like an orb spider in her web. Someone's backyard trumpet flowers are blooming, and the smell comes in through the back kitchen door in the evening.

But the muni trains passing in front of my front window are empty at unusual hours. The commercial district two blocks away on Irving is quieter than I've ever seen it; the businesses open shorter hours, with wary proprietors tucked behind glass and masks and blue nitrile gloves. We're all watching the numbers rising, wishing that there was some way to know if we'd been exposed - but the absolute lack of testing in the state has made it impossible to do anything but wait.

So in the meantime, I'm doing what I can in order to find something beautiful at least once a day, and photograph it. If you follow me on the socials, you'll start seeing them, and I'm going to try to post them here, as well.