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.

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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.