Why do I even have a blog?

I can’t really write much about my work because of where I work. I believe in what I do, what we do, and I’m grateful for the immeasurable opportunities to grow that being here provides.

I can’t really write about politics if I’m not anonymous for similar reasons. I haven’t believed there’s true anonymity on the internet in some time. These days I’m striving for visibility, invisible though the reason may be in person, in the name of representation.

Also, everything is politics.

I keep matters of friends and family to myself.

So, this becomes a fairly restrictive place. I wonder sometimes if it is too much of a complaint vector, if I should pull it or replace it with something more generic. But reading the comments I occasionally get makes me reconsider. If something I’ve written matters to even a few people, I’d rather have it out there than not. But I do think I could make this space more productive and more proactive.

I think I’ll try that instead.

(Image description: A columned brick building with the the American flag in the foreground.)

B1NIH

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Why I am no longer a cephalopod

 

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Image: Octopoda photo from the American Museum of Natural History. Photo credit: me.

This used to be me.

More accurately, this was my Twitter profile picture for most of the time I’ve been on Twitter. My name was simply Shademar. I haven’t trusted the idea of true anonymity on the internet for some time, but I enjoyed the casual layer of obfuscation. It felt like at least a sort of flimsy safety, if only the safety of not being obviously female. It also gave me a little bit of leeway to discuss medical issues and how they intersected with my work.

Sometimes, I may have let it fool me into thinking I was more anonymous than I really ever was. I was lucky enough that this fact never bit me in the ass.

I’ve been concerned for some time about the lack of disability visibility in the sciences, all the while ducking behind an avatar and screen name myself. I was afraid of uncontrolled disclosure and how it might impact my future career. I’m guessing many others are as well. I think there are more of us here than we’ve let on, hiding amongst the monuments built to the cultures of Overwork and Stress Martyrdom.

My circumstances have changed. I’d be lying if I said I suddenly became braver for no particular reason. I still wonder if I can call myself a scientist anymore, but I have more freedom to be visible. So, whatever I may be, here I am: Shannon DeMaria@shademar. This is my awkward and often self-indulgent little blog. I’m working on some things I hope may be of help to others, but I can’t do these things anonymously, and I don’t want to whisper concerns about visibility while I myself hide anymore.

glasses

I hate photos of myself.

I do not like teleworking

So I’m sitting here trying to write up a formalized telework proposal, and it keeps getting under my skin how much I dislike teleworking when I don’t have to. So I decide, why not take a few moments and evaluate why?

Not getting out of my apartment more can leave me in something of a rut. This has to be understood in light of two things:

1) I don’t get out a lot anymore. Between the extremes of the weather, the issues with walking long distances, and lack of energy in general, I tend to stay confined to my apartment when I’m not working. When I was still a practicing postdoc, there was one stretch of time when I was working on a grant that I didn’t get out at all for two straight weeks. By the end of that stretch, I was a wreck. I could barely get off the couch. Even seeing my husband gave me anxiety attacks. When delivery people would bring things to our door, I would hide.

Drilling down on that and similar reactions, I find that I desperately hate the idea of being homeridden. How did I get here? The notion that I had anything like an ‘outside life’ atrophied as I made my way through grad school and then years of a postdoc. Things kept getting more difficult. My two approaches were always to adapt as much as possible and try to work harder. So there’s work, where you push, and then there’s “home,” which is the place you go to collapse and recover. Obviously, these are problematic associations. Obviously, I need to get out more. These are things I’m working on, but I’m not there yet.

2) I do not particularly like this space I am occupying. It being an apartment, there are only so many ways I can change it. I can put railings in the bathroom, but I can’t remodel it to a sitting shower with no slippery threshold to try and step over. I can plug in lamps until I trip breakers, but I can’t add overhead fixtures. (I am, in some ways, glad it is slated for eventual destruction as it forces a limit to my tenure here. We aren’t going to find somewhere as convenient for what we’re paying, but I’m hoping to end up near public transit, or for smarter cars to get cheaper. Excited about that latter point, really.)

Being told I can stay here more often is not as appealing as it might seem from the outside.

I’ve shifted my goals in life recently, and one is that I’ve come to realize I would actually like to own a home. I grew up with construction, and with it, the sense that the primary constraint on the mutability of living space is ownership. It was always our family’s little irony, knowing how creative construction was but only putting it in action in other peoples’ spaces.

Another goal is to start driving again. Safety assist technology is getting there. By the time it fully gets here, it will probably actually be affordable.

(If I could go back in time and tell my purple-haired high school punkish self that someday I would be wistfully thinking about suburban houses and new cars, I would probably get laughed at and then asked, no, who was I really?)

Between my dad and my mom, I probably moved about 15 times while growing up. It never bothered me. I was ready to be flung across the world by academia (before I realized the visa issues two people with chronic health issues would face in moving to any country with a decent safety net.) At 37, with two neurologists telling me I’m probably in the secondary progressive stage of MS, I’m happy just to land on my feet

Just, I need to start getting out more.

Not less.

(File under: letter to my boss I probably won’t send but I needed to get the thought out.)

After the crash

I’m bouncing off of my first post-academic track exacerbation.

Bouncing seems like the wrong word. It seems too buoyant, too ebullient. As if the paired physical/mental crash that comes with a stress induced flareup is a trampoline and soon I’ll be up in the air doing flips and laughing giddily.  Which I wouldn’t mind I guess.

Rebound doesn’t seem much better. Getting through is probably the most apt. Surviving, while true, is slightly too drastic in connotation. Barring the unforeseeable, not surviving is not on the table. The question is never literal survival. It’s: how much irrevocable damage do I do to my life, career, physical and mental health while I go through quasi-functionality for who knows how long?

This one was rough. Cognitive issues, which scare me more that the physical ones, came into play. It’s the first time I’ve really experienced memory problems that weren’t just a shade beyond absentmindedness. It’s more than a little frightening realizing you can’t trust your own brain, particularly after watching multiple family members go through the slow decline of end of life dementia.

I’m back to the point where I can imagine adapting if and where I need to, getting help with what I can, trying to hit reset and moving on. But for a while there, my life stretched into just sitting there, staring at the floor, static-filled head braced on weak hand, elbow digging into a tingling leg, a non-thinking facsimile of The Thinker.

I’m rethinking disclosure, because I’m tired of imagining that I’m perceived as a lazy, clumsy ditz. (I do get that what I imagine others perceive is probably just my own fears amplified back at me, so now I’ve got the image of The Thinker viewed through the reflection of a fun-house mirror entering my increasingly convoluted visual metaphor. I’ll throw in some sharks for the hell of it. It’s almost Halloween, so let’s get some jack-o-lanterns and half-caught ghosts in there too.)

There’s not really a point to writing this, except as an exercise in doing something that isn’t nothing.

Typing, chaos, my shitty hand, and fml…

Typing, chaos, my shitty hand, and fml…

I used to be able to type and mouse like a normal person. Thanks to the SFMC, this is no longer the case. I could detail the experience by talking about the gradual devolution of my dexterity and functionality but I doubt it’s anything novel. We all have our issues.

When I need to use a keyboard, I need to stare at it. That means I don’t see the unfurling of on-screen words, the real-time missed letters, and the idiocies of autocorrect until I go to review whatever it is I wrote. We tend to be snowblind to our own mistakes and sometimes exhaustion or desperation can mask rational thought. Therein lies a kernel of the problem: obsess about the construction of a statement and you might miss the big picture on content. I just did. FML.

This isn’t a rant about typos in emails so much as it is one about how I obsess over stupid grammatical details while derailing a much larger message I have no place to derail. Why? Because of panic and chaos from multiple inputs. But also just because. Because I want to be independent. Because I want to prove myself, to myself and others. Because I feel like I failed and I want to feel like I can pull myself back up from failure. Because I fear getting worse. And so much more. No matter what I do, I either feel like an idiot or coward.

I’m learning this new environment, but I’m also realizing having crap hands is more than a scientific metaphor. Most of what we all do comes from the mind, not the hands. Ignore the hands. They are what they are. The mind is what we are and we can’t, simply can’t, ignore it.

Transitions are hard. Good luck to all.

The color red.

The color red.

It began, or at least my awareness of it began, on a Saturday afternoon in June. In lab, where I’d been in a dark room using a confocal microscope to scan through fluorescent labeled neurons. You lose track of time during serious microscopy bouts. Particularly in the relative quiet of weekends.

It’s dark save for the bright glare of a screen, the brighter point of laser illumination hitting the sample. I stepped out of the room to stretch and catch my bearings and, as best as I can describe it, one of my eyes didn’t fully adjust to the ambient light or a normal afternoon. It was strange and exceedingly subtle, but it didn’t go away. I stood there blinking for a while, eventually holding a hand over one eye and then the other, trying to figure out which was the culprit. A lab mate caught me in this odd little act, one that would become an oft practiced ritual over the next few weeks. So there is a witness to the beginning. My concern at first involved lasers and the bright UV thrown by the mercury bulb. If you’ve worked with lasers you might have heard the joke…”Don’t look into the laser with your remaining good eye…” But the light path was protected, and I was realistically aware that I hadn’t stuck an eye in it.

Eyestrain, I figured. Dark room with bright points of contrast. It would probably go away with a little rest. Of course it didn’t, or why would I call it the beginning? The next few days would find me repeating the alternating occluding eye thing, as the shift in perception began to exacerbate, more noticeable yet still oddly inexplicable. A slight loss in contrast, a slight feeling that lines of striking contrast were crawling, shimmering. By the start of the week, the perceptual symptom had been joined by another, a slight ache when I looked to the extreme of any given direction. The next few days involved a good number of jokes and earnest questions about eyesight and age. When I mentioned, laughing, that I could barely read the “if you can’t read this you probably have scurvy” sign someone had tapped up in the lunch room as an odd joke, one of my lab mates became concerned and in turn, convinced me that eye problems were Serious Enough Business that I should go to the student health clinic.

She pointed out that it could, for instance, be an infection, something that might cause lasting damage if it wasn’t addressed in a timely fashion. I concurred, but begrudgingly. It generally took a lot to get me to consult a health related professional. I’d gotten the hypochondria worked out of my system as an undergrad studying among premeds. I no longer had time for all that. I was three years into a PhD program, three months out from my wedding, and my thesis project was hitting a wall. Still, after lunch, I made a quick trip to the drop in waiting room at the student health clinic. I figured, if nothing else, it was in poor form to be using a communal microscope with a potentially infected eye. I expected to be out in an hour, tops, with some eye drops and possibly a photocopied monochromatic form or two.

Ha.

I wouldn’t leave until the clinic was closing, afternoon bleeding into evening, having just been told I would probably never be able to buy private insurance in California again. (This was pre-ACA, and a reminder of how life changing that legislation is for some of us.)

The visit was odd. Contrary to what I’d reported in the lunch room, a trip to the eye charts revealed no detectable deficit in my vision between afflicted and non afflicted eyes. My vision was still better than 20/20 in both. But one of them still perceived the world in a strange and new way I struggled to describe. Thus began an iterative process. Different clinicians, eye charts, peering at my retina through my pupil, me trying to find the right words. Color contrast books of numbers written in circles within circles. And, disconcerting, everyone kept asking about the color red. No one said what they suspected, and I didn’t press because I didn’t want to feel worried by the fact they all kept asking the same thing and weren’t saying anything particularly reassuring. It kept coming up, saturation and the color red. Did this look as red through each eyes they would ask, holding up something red. What the hell does that imply, I started to wonder. Why do medical professionals keep waving red things at me?

I was eventually escalated to optomology, given a visual field test, and finally an actual diagnosis.

Optic neuritis, inflammation of the optic nerve. I’m not sure what nerve bundle conformation of cone projections or compisition make the color red in particular susceptible to optic neuritis, but it seems it is a common feature.

The optometrist tried to be reassuring about it, but the fact that I was given the option to pay out of pocket to keep it off my official medical record because of the aforementioned insurance issue was disturbing. The stats I was given at the time (that there was a roughly 25% chance this could be a symptom of MS) were actually an understatement, yet still seemed horrifyingly high. I made it back to lab, deciding during the walk that I would embargo myself from looking up medical information on the internet for the preservation of sanity until I knew one way or another. I decided to be stoic as possible. Back in lab, my lab mate asked what was wrong and I broke down, so not that stoic after all. My PI witnessed this, thus removing any sticky questions about disclosure and making my life much simpler. Ask many people with a neurological condition about diagnosis and they will tell you about an oddessy. Ask a neuroscientist in training, embedded within a vital and well connected community of research neuroscientists and neurologists, and you might get a slightly different story. Compared to most, my oddessy was jumping a puddle.

I jumped it and continued down a path I still walk this day. I walk towards different things than I used to, despite promising myself I never would. The future sometimes seems tinted in red. I seek to shift it to rose, thorns and all.

Adapting, writing edition.

Adapting, writing edition.

I’ll preface this with the following: I no longer have the strength or manual dexterity to type with my right hand.

I could write a long post about this, the frustrations of gradual decline, the gradations between touch typing and right hand uselessness, but that’s an angsty topic for a different day. It is was it is, and adaptation is the new name of the game.

Writing via traditional interfaces has become difficult. I’d begun to give up on it in a general sense, outside what was strictly barely necessary for work. This sucks because historically I’d used writing as an outlet to blow off stress and get outside of the occasional morass of my own head. I’ve tried a lot of different adaptations, mostly to no gain. For the sake of this post I will go over one that failed my particular purposes and one that has not.

Didn’t work very well:
Voice to text.
It’s the obvious solution and one of the first I tried. For work related purposes, I ran into two main difficulties, technical and psychological, respectively. For general purposes, a third psychological one comes into play.

First, the technical: the dictionaries of V2T programs don’t play well with the jargon plagued world of scientific writing. They can be added to, but that’s a painfully slow process when it seems like every other word had to be taught. Along with every grammatical variant of it. Neurogenesis. Neurodegenerative. Neurodegeneration. Then add the blizzard of weird acronyms, along with all the cutesy capitalization games scientists like to play when naming their flashy new technique… In the end it felt less like I was writing and more like ii was training some machine learning program.

Perhaps if I invested more time, just sat there and read the bibliography of my last grant application until it got everything right, this problem would have gone away (but, oh, then trapped with that particular program forever, trying to figure out how to synch libraries across devises and versions. Gah) but the other reasons loomed large enough to dissuade me from the investment.

Psychological reason the first: it’s difficult to speak the way I need to write. For scientific writing and its terse structured prose in particular but even for creative writing. Our brains are remarkably good at deconvolving spoken language, and in turn, don’t formulate thoughts into perfect, succinct, grammatically correct statements. Sitting at a keyboard gives us ample time to think and rethink an idea into a statement. This does not come naturally when speaking. There’s a reason why, when practising a talk, we often write it out first. We’re transliterating, without realizing it.

Psychological reason the second: I can’t bring myself to talk at my computer if anyone else is in the room. Just can’t. (Even if this is just overactive self consciousness, I’ll also note that the mike picked up background noise, leading to some hilarious results involving snippets of ambient conversation rudely barging into my proto-grant.)

So the headset mike lies unused next to my computer. Alas.

The caveat before the thing that worked part: while I have found some things that help with writing in general, scientific writing still forces me back to a keyboard, hunting and pecking with my non-dominant hand until my fingertips ache.

Is working unexpectedly well:
Writing on my phone using a swipe based keyboard.
I can do this far faster than I can mono-type on the expanse of a full keyboard, using either my left thumb or a stylus in my right hand. I’ve used both Swype and flexsey, though I currently use Swype as it seems to do a better job interpreting my wildly inaccurate scrawlings. They suffer similar dictionary problems as V2T but they learn as you go and typing something out and hitting ‘add to secondary’ somehow seems less arduous than repeating myself at my computer over and over again. I’ve been amazed at how accurate this input method can be, particularly with words I tend to misspell. Turns out, I can usually get the right word even if I just sort of wing it with the swiping. Even when my hand is a bit shaky. Preposterous. Perfunctory. Predilection. Yep, all of those came out correct in less than a second.
Juxtaposed. Jurisprudence. Jugular.

The strange thing is that the swipe keyboard basically collapses words into complex letters, and thanks to internal mapping of the qwerty layout, I already I know this odd new written language. It’s like discovering I know some insanely efficient shorthand that corrects my atrocious spelling as I go. The fact that it’s particularly forgiving in terms of how accurately you need to hit letters is the key for me. I can keep my hand braced and barely move my fingers, forgoing the need for particularly dexterous coordination.

I’ve taken up writing as a creative outlet again. The idea of putting words into text no longer daunts me. I imagine my stylus as a quill, my phone as a parchment, and marvel at the way technology has brought written communication full circle, except this parchment syncs with the cloud and this quill writes with a tiny capacitive tip that needs neither ink nor batteries.

It’s not perfect, but it’s something.