Spousal Support (Part 1)

(by Zuska) Aug 04 2014

Of all the discouraging wounds that post-stroke migraines bestowed upon me, by far the worst was turning chocolate into my enemy.

(Regular Zuskateers know that about a decade ago I had a migrainous stroke, and the stroke itself made my migraines worse, to the point that I was forced to quit working. I have never yet been able to return to the workforce.)

Right at the first, nearly blind, I had no migraines at all. Alas they were not rooted out. As my vision returned, the migraines crept back into my life.  Have you seen English ivy working its uninvited way up a tree? Even an oak must eventually succumb to the slow smother. So it was for me as the migraines in time had me felled, bedridden in pain.

Before the stroke I had never really had what one may call "triggers" - specific foods or events that were reliably connected to production of a migraine. After the stroke the world around me rapidly mutated into one big trigger, as once innocent foods and things and weather turned on me. Raw onions; then cooked onions; then anything with the slightest amount of onion powder in it - even ketchup, even the dollop you might put on a hamburger.  Peanut butter; then yogurt; then bananas. Red wine goes without saying, and while we're at it, say nothing about any form of alcohol. One day, it was just a single small whiff of someone's cigar smoke from afar that did me in.

Visual triggers were now a problem, too. Many things interacted with my scotoma, a remnant of my stroke-blindness. Switching tv channels too rapidly. Bright sunlight on winter afternoons. Very busy lighted displays in an electronics store. The cover of Oliver Sack's book "Migraine", depicting a painting by a migraneur of his mosaic aura. Any depiction of a visual aura.  Looking at the rotating rows of corn on a cob as I rolled it in butter.

I had once pooh-poohed the notion that changes in the weather could cause a migraine, but no more. Every approaching thunderstorm made my head ache, or ache worse if already sore.

There was so little left that I could eat - everything had onion powder in it. There was so little I could safely look at and be certain of unmenacing ocularity.  There was nowhere I could hide, for we lived in Kansas, and Kansas was always having thunderstorms drop by to visit.

But I still had chocolate. Chocolate was my friend. It would never hurt me.

Until it did. With a vengeance.

Mr. Z theorized that it was cheap chocolate that hated me and that high-end chocolate would do me no harm.  Naturally the experiment must be done! We bought the best we could find. I took one eager bite of one most desirably delicious truffle and BAM! You go to your room right now, young lady, and stay on your bed! No playing with any of your toys till you think about what you've done and say you're sorry!

During this period I slid into despair about my life, about its ever-narrowing, tighter, restrictive circle. I wept openly to Mr. Z that all was now pointless. He gripped me firmly by the shoulders, looked me straight in the eye, and said:

"Someday, this will change. Someday you will eat raw onion again. I know it."

Well, he might as well have said "Someday, wild geese will voluntarily stop shitting all over the sidewalks next to every little man-made pond." It was that ridiculous. He didn't even say "you will eat chocolate"; he went straight to raw onion, the first and worst of my enemies.  But he said it with such gentle strength and force of conviction that I believed him.

I asked him if he really thought so, and he said yes, and did he promise, and he said yes, and there was a hug and a kiss, and I believed.  This, Zuskateers, is the only time in my life I have ever felt actual faith. I had absolutely no evidence, nothing to go on, no reason to suggest that I would ever again eat raw onion atop a hamburger on a bun with a dollop of ketchup and smile afterwards. But I let loose my despair, and shouldered up just the backpack of pain and depression. Perhaps, just perhaps, I would eat onion someday.

This man, Zuskateers, had seen every bit of my journey. He stood by me night and day and never uttered a single complaint about his burden. No whining about how we didn't go out to restaurants anymore, or the foods we didn't eat anymore (because an ill person and a working person don't have strength and time to cook separate meals), or the places we didn't go together, or the necessity of issuing warnings for tv channel surfing, or the need to wait on me with food and drink and medicine when I was wrapped solid in migraine vines. No fuss about the endless doctor appointments. He offered me the tender care a mother would give a beloved child.  And he lent me his strength to carry on at the moment I was most in need.

Over time, his continued care and regular botox treatments vanquished the enemies, one by one. The last shall be first, and the first last - Chocolate, o my beloved Chocolate! You are once again mine!

And so on, and so on, until sometime five or six years ago, my dear Zuskateers, I. ate. raw. onion. I did! I did! I did!

5 responses so far

It's Like They Wrote It Just For Me

(by Zuska) Aug 01 2014

So thanks, guys. It's a blessing.

"What story is beginning? if this one is no more?"

Lyrics here.

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Truly Social Media

(by Zuska) Jul 18 2014

A change of scenery is an excellent treatment for depression, anxiety, and worry. So Mr. Z and I are going out tonight to see a band that he never wanted to see before.  But you know, they are taper friendly, and he has this fancy new bit of gear, and it's nice weather, and his taper friends all asked if he couldn't come out and play this weekend, and I said yes honey run along! Of course I am running along with him.

It's up in the Poconos, an outdoor show, and should be a beautiful evening so how bad can it be. I love the taper dudes, they are great guys, but sometimes hilarious to me. They all call each other up and encourage each other to go to various shows. "Take your rig out to play" "Your rig needs to get out and get some air" "Time to give that rig some exercise" and so on. Their behavior is indeed much as the proverbial women-going-to-the-restroom-together. They do not wish to go to a show alone, it is more congenial to have a taper friend to go with them.

They will tell you it's for safety - the music's safety. There has to be a backup. If one taper's recording is messed up, there will be another recording "for the archive", "for posterity" because they are in the business of preserving music.

And part of that is true.  But mostly I think it is because, surprisingly, taping is a social thing. It may look to us like a solitary pursuit but they know better than us. They have inside jokes about it, about the characteristics of the "taper" (with a picture of a tapir on a t-shirt) - the taper erects temporary structures, the taper does not like glosticks or beach balls (see here for further explanation) etc.  They know they are a tribe. Music led them to the tribe, but they are not bound by a particular music. It is the calling of the tribe to preserve music.

The calling of the tribe: to preserve music, and to gather the highest quality gear for the preserving of music, so as to have the rationale for the necessity of going out to preserve music. With the tribe. Socializing, by the media, with the media, for the media. It's all good!

One response so far

Competitive Farm Marketing

(by Zuska) Jul 14 2014

You cannot sleep in on Saturday and expect the black raspberries to sit around waiting for you to show up at the farmer's market. You just can't. They will have up and left you forlorn and bereft, as they jump quickly, even frantically, into the first reusable cloth bag or colorful wicker basket that strolls by.

The natural habitat of berries at a farmer's market is close to the pay station. It's no good standing around waiting politely for the line to shuffle along the table to the berries. Say "excuse me" if you must, but slip in between and grab some of those jumpy berries NOW, and return to the end of the line, holding on tightly. You will be ever so glad you did once you reach the pay station and survey the scorched landscape that was once a lush berry patch. Remain vigilant until you have paid for the berries and secured them in your reusable cloth bag/colorful wicker basket. Because when you set them down on the table to retrieve your wallet, so as to make an offering to the berry gods, 99% of the time the hand of the person behind you will instantly hover over your berries while they ask, in foolish hope and lust combined: "Are these yours?" Whatever you are in engaged in at the moment, stop and lay a hand possessively somewhere on the berries with a firm "Yes!" that brooks no sharing.

Secure the berries carefully in your vehicle, in a cooler if you can't park in the shade. Then, and only then, return to the market to shop for the more abundant comestibles, the zucchinis and cucumbers, the cabbages and carrots, the peppers and potatoes. These will make the bulk of your meals in the coming week but the berries will make your bliss.

In your childhood you watched cartoons on Saturday morning and then tramped the woods with your friends, collecting the berries in a bucket, eating as you went, returning home with stained hands and a pailful that your mother turned into something delicious. You only had to compete with the birds, and there was enough for everyone anyway. But you washed your hands, and grew up, and went away to college, and then to grad school, and then all over the place, and now you live a cosmopolitan life in a city that offers so much more than you ever could have dreamed of in your little home town. You can have anything you want, really. You can even have your berries and eat them, too.

6 responses so far

Things That Keep Me From Blogging

(by Zuska) Jul 14 2014

Disorganization. Procrastination. Endless estate paperwork and ensuing depression.

Trips back to western PA to empty out the house, and ensuing depression. Knowing the house is finally empty, putting it on the market, selling it two days later, and ensuing depression.

Sunday evening making a cake while dreaming about renovating my ugly kitchen when suddenly the power goes out because the electric panel died, 24 hours before a planned trip so hello emergency electrician, goodbye 10% reno budget...and cue ensuing depression. While a supposed-to-be vacation week is suddenly and terrifyingly made a visit-to-the-hospital week, returning home with worry worry worry on the mind, and ensuing depression.

A garden that was the source of pleasure and rejuvenation now overrun with weeds, baked dry as a bone, plants dying or suffering powdery mildew - in just one week! - looking like an eyesore and a hopeless chore, and ensuing depression.

Some hours on the phone for a $$$ doctor's bill the insurance won't pay, for the same test they paid for a month prior, submitted with an incorrect procedure code, impossible! for the aggressive billing office to deal with in any way, and ensuing depression.

No thing is unbearable, but everything is. No thing is impossible to deal with, but everything is difficult and draining and filled with despair.

No thing keeps me from blogging, but everything does.

7 responses so far

Privilege Cranks

(by Zuska) Jun 27 2014

My theory, which is mine: it shows why Einstein was wrong! The earth is flat! Vaccines cause autism! Creationism is true and dinosaurs walked the earth with humans because the geological record is a lie! There is no climate change and if there is it is not caused by humans and if it is, it would be fantastic to warm things up a little - who doesn't love the beach!?! You and your sciency science will never convince me otherwise!

Who in the science blogosphere has not had a close encounter of a bothersome kind with cranks of one variety or another? Many of us dedicate our time to debunking these cranks and trying to insure that legitimate and helpful scientific information is readily available and accessible to the general public. Our esteemed repositories of scientific knowledge do not give air time to these cranks. You won't see Nature allocating  precious coverage to a flat-earther and their ramblings. You won't find creationism featured in a blog post on the SciAm blog network.

But the privilege cranks. Oh, the privilege cranks!  How tenderly do we suffer the little privilege cranks to come unto us! We forbid them not, for such is the kingdom of science.

They write their screeds, and screech their nonpologies, using the mouthpiece of Glamour Mags. They present their mind-numbingly boring nattering condescension as if a compilation of every bit of debunked privilege defense were a brilliant, flawless diamond they just unearthed - and they do it in an exclusive blog network!

They crank, and they crank, and they crank, and they crank. And no matter how much goddam debunking time and effort one part of the scientific community expends, still the cranks are able to spin their fables in the most highly regarded scientific circles. They even crank  journal articles - that are then used to support the crank commentary.

Don't bla to me about freedom of speech. The Discovery Institute wants "freedom of speech" in the scientific community too, but we don't have any problem telling them they are WRONG and are NOT doing science.

Scientific American, you loaned your imprimatur to a crank. Was it an accident? Or are the cranks running the show there?

I shouldn't have to fight the center. Stop treating privilege cranks like what they say is worth listening to. Let's at least agree to stop treating them like they are in a conversation about gender equity or affirmative action. You don't have a science conversation with anti-vaxxers or climate change denialists. You try to work against the damage they do. We work with each other to achieve an equitable world, and against the nutjobs to try and undo, block, or mitigate the damage they cause.

So let's call these nutjobs what they are: privilege cranks.

5 responses so far

Theon Greyjoy: Catastrophic Transformation Into Living Death

(by Zuska) May 16 2014

Game of Thrones fans, book and show alike: this post DOES contain spoilers. If you are not up to date with your reading and show watching (Season 4, Episode 6), then read no further.

Also, this is very sad. You are warned.

Continue Reading »

8 responses so far

Eventually They Recognize Your Genius

(by Zuska) May 12 2014

I see the Google doodle today is in honor of Dorothy Hodgkin's birthday. They did a good job with the doodle. Very nice. Seeing that prompted me to think of another famous scientist in the world of protein structure, who it just so happens is also female - Jane Richardson. She is currently a James B. Duke Professor of Biochemistry at Duke University.

My time at Duke coincided roughly with the period between shortly after she'd been awarded a MacArthur 'genius' grant in 1985, and the year she was elected to the National Academy of Sciences, in 1991. During that time she held, as the Chemical Heritage Foundation notes,

a variety of “invisible” positions as a research assistant, nominally in a variety of departments due to her lack of a doctoral degree and the university’s rules, since discarded, against hiring a husband and wife in the same department.

It only took inventing Richardson diagrams, winning a MacArthur, being elected to the National Academy of Sciences, and the patriarchy's grudging dismantling of the "nepotism" rule,  for Duke to find her suitable for the faculty.  Well, she doesn't have a doctoral degree. So really, Duke was doing her kind of a favor there by granting that exception.

Anyway, eventually they recognize your genius, if you live long enough. Tough luck, Rosalind Franklin. Ladeez: you may not need to depend upon the kindness of husbands to help craft an "invisible" position for you, but do strive to be über-excellent, have good health, and longevity! Then someday, when the d00ds are wondering just why there are no really top-notch women scientists, yours can be one of the names that never comes to their minds!

I feel a particular kind of grudge against Duke for Richardson's years in those "invisible" positions. Although I was a biomedical engineering student, I was working on my dissertation with a biochemistry professor. So most of the time I was in the biochemistry building. I was trying to figure out who was who, what the pecking order was, and where I would fit in, if I could at all. People were still talking about Richardson's MacArthur, and what an amazing scientist she was. A postdoc in my lab who was helping me find my way around warned me not to bother her with any questions at all because she was so incredibly important and busy and besieged by requests from other colleagues and the press, that mere students should never cross her path. And then he explained that she didn't really have any sort of real position, but just kind of worked in this kind of not-faculty not-postdoc not-labtech not-student kind of thingy job.

So, my mind was blown.

The MacArthurs, I had just learned, were for geniuses. You could not apply for them; someone mysteriously deemed you worthy and you were so named a Fellow. It was incredibly prestigious. This woman had won one. She was a genius.

But she had no job. And the university did not say "Hark! Unbeknownst to us, a genius lives amongst us! Let us hasten to beg that she honor us by joining our faculty!" Her official job appeared to me to be something like "scullery maid" while, according to what people were telling me, she was doing genius science.  How to explain the conundrum?

1. Her science was no good, but MacArthur, knowing nothing about science, got hoodwinked into handing out money to her. Everyone likes her now because she has money, and money is necessary to do science. Everyone wants some of the money.

2. Her science was okay, but it was mostly her husband's work, and the MacArthur folks got fooled.

3. See (2), but the MacArthur folks were making some political statement about feminism.

4. Who says the MacArthur awards are a big deal? This postdoc probably doesn't know what he is talking about. Who would give some big award to a woman who doesn't have a real job? Just forget about it, and your brain will stop hurting.

Not long after that, I found Women's Studies at Duke. Then a LOT of things that were murky and mysterious suddenly began to clear up and make a twisted kind of sense. I knew now why the genius was a scullery maid, and why even scullery maids who are geniuses are still not invited into the parlor.

The clarity was bracing, and yet enervating. Why on earth was I laboring away at my stupid little project? I didn't want to be a scullery maid. And yet I knew I was no genius, so if that was what genius got you, what was there for me?  There I was, down the hall from a genuine genius scientist potential female role model, and all I got out of it was abandon hope, all ye who enter here. Ye are come to where ye shall see souls to misery doomed, who intellectual good have lost. No hope but blind life meanly passing, and Fame of the world ye will have none.

That was a bad time. This is why, I think, it's so difficult for women with some privilege to give it up and look at the patriarchy straight on. It's not like feminism is going to make you a cheerful, happy-go-lucky soul and give you tenure, fame, and cash. Cognitive dissonance and denial is bizarrely useful in a purely pragmatically functional way, even given the very high cost one pays to do so. But once you know, you can't unknow. Time to look around for like minds and foment a rebellion.

4 responses so far

Bag Nights and Authenticity

(by Zuska) Mar 28 2014

On the twitters today I saw this from @TomLevenson

 

The link is to a post called Viewfinder Hours by Thom Hogan that suggests authenticity of voice can be gauged by the "Bag Night" metric.

Back in my days running Backpacker magazine, we had an “authenticity” metric that we developed and practiced. I think it’s time for that here in the photography arena, as well. The Backpacker metric was “bag nights.” You got a bag night if you spent your sleeping hours in a sleeping bag in the wild (not your backyard ;~)...Authenticity is important. It means that your opinions are based upon real use and not casual contact with something. The Internet is filled with non-authentic opinions. That’s not to say that there aren’t plenty of authentic ones, only that it’s often difficult to discern which is which.

Hogan suggests an analogous metric of "viewfinder hours" for those who use and write about cameras. Those with more viewfinder hours would have more cred, wouldn't they? You'd take their opinion under more serious consideration.  @TomLevenson says we could apply a similar metric to writing or any other creative work.

My first reaction was wow, that's a great idea. And keeping track of your [insert creative endeavor] hours would be a kind of incentive to make time for your creative labor, and to do actually do it, shitty first drafts and all. And then...then I had second thoughts. Which I promptly put aside for several hours while I tended to a headache.

So, the second thoughts:

The metric BlaBla Hours as a badge of authenticity doesn't sit well with me for a number of reasons. Practice makes perfect, we say, and to some extent the time logged at any activity is going to yield improvement. But there is also the law of diminishing returns.

I once spent a month in the lab of a top researcher that my PI's lab cooperated with. She tended to attract almost all female students, postdocs, and even lab techs. Her lab was very productive and highly regarded. Several of her postdocs/grad students had children while working with her. She told me what advice she gave them about mixing family and work (I'm paraphrasing): when you're at the lab, leave family behind and do your work 100%. When you leave, leave the lab behind and be with your family 100%. And, she said to me with emphasis, no one can say that [her postdocs/grad students] have been any less productive or have done work of any less quality than any other groups we competed/compared with. This was true. She ran her lab in total anti-K3rn style, and she was a great success.

BlaBla Hours is a metric that, without context, tends to reward those with the fewest constraints on their lives - people without responsibility for children or elders or a chronically ill spouse; people without chronic illness or disability that impairs accumulation of BlaBla Hours; people with sufficient resources to afford the time and equipment necessary to accumulate BlaBla Hours; people whose BlaBla Hours will be recognized and acknowledged as such by the Powers That Be. (Bag nights in the wild only - what do you mean, urban science?  A smart camera phone? You need the V3XLR-22bi Pro! Writing for women's magazines? That's not real writing!)

It is possible to speak with authenticity, to add real value to the conversation, even if you can't rack up the most BlaBla Hours ever. BlaBla Hours is a metric that can tell you something, but not everything. Without context and without other information, it turns into just another version of Face Time At Work. BlaBla Hours is a metric that's probably most useful for you to evaluate your progress to a goal, rather than for others to evaluate you.

It all reminds me of when science bloggers tried to authenticate science blogging by putting a little stamp on blogs that authentically blogged about authentic science. It was a lovely idea, except it didn't include any way to authentically authenticate authentic blogging about authentic issues of gender/race/sexuality/ageism/class in science. Of course that's not actually science blogging so it wasn't really a huge problem for the authenticators.  If BlaBla Hours is just a metric for people who can really spend the time really doing real BlaBla, then none of that other stuff I talked about matters either.

 

3 responses so far

I Held You In My Arms As You Once Held Me In Yours

(by Zuska) Mar 28 2014

This is something I wrote three years ago but never posted. I decided to share it because mom is on my mind, and because I want to encourage those of you involved in elder care to consider keeping a journal. I did write some during my years caring for mom, but not regularly, and not nearly enough. I wish I could have all my time with her back in writing. Here is one bit I did capture.

 

You'd been mentioning the arboretum during our phone calls, and on my last few visits.  What could you be talking about, where might it be?  An arboretum, right there in the city?  You said we went to it years ago, as Girl Scouts, when you were a troop leader. The woman from our town who took us there pointed out the spring wild flowers.  Trilliums.  I didn't even know you knew what they were.  I had recently discovered them, through a garden excursion with my own local arboretum. And thought I was fancy for learning what you had long known.

But the arboretum.  Through the genius of google, I found it, right where you said it would be.  And I asked you if you wanted to go see it.  Yes.

We stopped by the woods on a sunny autumn afternoon.  The parking lot was empty.  I got your wheelchair out of the trunk and should have known right away I was attempting something that wasn't sensible, something too difficult, something downright dangerous.  The handicapped parking spot was the only thing about the arboretum that was accessible.  Between the parking lot and the arboretum path there was a step - a small step, to be sure, but still a step.  I didn't notice then how the pavement sloped a little downwards there, too.  Nevertheless, you wanted, and I wanted for you.

I placed the wheelchair on the path, and helped you manage the few paces from the car to the chair - including that small step down.  Not bad.  The path itself was gravel - not great, but I managed.  We rolled back and forth only a short distance, as the path quickly sloped downwards at either end. As stupid as I was that day, I wasn't stupid enough to push you in a wheelchair downhill on a gravel path.

We admired what trees we could see, read what signs and markers there were to be read, and then returned to the path entrance.  And the little step, and that - oh, now I see it - sloping pavement.  How in the world am I going to get you back into the safety of the car?

I brought the chair close to the step and locked the wheels, and helped you stand up.  But that easy step up for me, from the level surface to the mildly sloping pavement, was for you a step onto a looming incline - you, with your weak legs, poor balance, and no handrails in sight.  "I'm going to fall, I'm going to fall!" you cried out.

"No, no, you aren't!"  I wrapped you in my arms and by sheer will alone I held you up.  By all the laws of physics you should have been lying on the rough asphalt with a broken hip, autumn leaves plastered to a bloodied skull.  Those are the images that flashed through my terrified brain as I steadied you, calmed you, helped you move slowly to the safety of the car just those few paces away. "How did she die?" someone murmurs at the funeral home.  "Oh, it was the daughter's fault.  Knocked her down on some godforsaken parking lot pavement and bashed her skull in." But you did not die, and we both live to drive off for dinner with your sister.

While I held you and did not drop you, and vivid images of your death flashed in my mind, this also came to me.  There is a story of my infancy you have told me over and over and over again.  How, as a baby, I was colicky, and you walked the floors with me every night, trying to soothe and calm me.  How one night, holding me so long and so late, rocking back and forth from one foot to the other, so tired from all your labors of the day, you fell asleep standing up.  You woke up just in time to catch yourself from dropping me on the floor and falling on top of me.  I am certain, from the sheer number of retellings of this tale throughout my lifetime and the way you tell it, that images of my bashed and bloodied baby skull on the kitchen floor must have flashed through your terrified brain.

I want to give you all that will make you happy, just as you did for me, but my first job is to keep you safe, just as yours was for me.  I am not an overworked, sleep-deprived mother.  I should have known better than to try something crazy like an arboretum outing, and all on my own, too.  No one gave me a manual for this.

My arboretum's paths are paved. I could wheel you around the whole of it.  But you are not here. And it is not the one you remember, with the trilliums, when you were a Girl Scout leader, when your legs were strong, when I was a girl, when life stretched long before you, when a step was just something you stepped lightly over on your way to something else.

5 responses so far

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