the glass box…

Bat meet Bat

“How are you?”

As someone who lives with about a million words buzzing through my brain at any one moment, finding myself without words is an unusual and disconcerting phenomenon. Yet here I am, unable to answer that deceptively simple question. Even though social convention defines the answer for me (I’m supposed to say something benign like, “okay”), the words avoid me. The best I can do is offer a pre-emptive, “do you really want to know?” meant to inform the casual passer-by that this is no time for me to endure idle pleasantries.

I’m living with bad news, a life-challenging diagnosis that smacks me into reworking everything I thought I knew about myself and the world I inhabit. People ask me if the news is private; it is and it isn’t. It is a fact, a fact as basic as stating my name, and it is inescapable. The question is a curious one, as it begs the response of “why would it need to be private?” What about the circumstance requires it to be hidden, who is being protected by its silence, why would I need to become the guardian of this information? These questions make sense if we’re talking about a situation that was foisted on me, robbing me of voice or volition. True, I had no choice. But neither would anyone else (in spite of our society’s false belief that we can stave off such situations – we can’t. It is a roll of the dice, like so much else in life, and it says nothing about my worthiness or status as a human being. No – actually it says everything about my status as a human being, because it is an expression of our simple, frail, unknowing human nature that such things happen to us, seemingly at random). I do have a voice, as much now as before I had this news. I have a right to talk about the effect it has on me, in the ways I want to and with whom, but to state the fact of it – no one really owns that story, presuming it merits being called a story in the first place.

The privacy surrounding the news is more about whether or not I have the energy and resources at any given moment to share my condition with anyone else. I do not need to be private, but our talking about this necessitates an evaluation of our relationship. To speak honestly about me, I will need to let loose the unpredictable, scary looking, irrational intermingling thoughts and feelings because the condition takes away the energy required to filter, to present oneself in socially acceptable ways. Take that phrase, “socially acceptable” – is it really more a comment on the basic expectations in place that allow two people to interact? Break that social contract and you don’t know what you’re left with, other than knowing you have lost precious energy that you will not be able to get back.

The social mores connected to giving and receiving bad news seem to suggest the speaker needs to be calm, collected, full of answers, and positive. In other words, be fake, put on a brave face and smile, largely because the others in this arrangement can’t handle the possible alternatives. Given those requirements, I do stay private sometimes because I am not able or interested in making my news comfortable for someone else. Sounds harsh, but if I’m on fire, I don’t need to quietly and easily articulate, “excuse me, but I happen to be on fire, could you be so good as to perhaps, locate an extinguisher?” No, instead I’m going to yell,

“JEEZUZ I’m on FIRE! Isn’t it fucking obvious that I’m on FIRE?? Help me!”

And I’m not going to get into a pleasant conversation about all the good things that can come from me being on fire, or identify all the chemical processes associated with making and extinguishing fire, or philosophically explain what fire is and why fire happens. When you’re on fire, you’re concerned about not being on fire. My ability to provide answers and be assertive disappears because I might be dropping and rolling to no effect. What I do need is for someone else to step in, recognize that the fire is there and that fire is not my normal state, and my survival depends on them to move towards the fire, not away.

So, being private is expressive of a decision point, my assessment of whether or not I can drum up the energy to find the words, knowing that I will learn in less than 5 seconds wether not this relationship can accept me being on fire. I’ve already learned that a lot of people really don’t like fire and have no idea how to respond to it. Someday I’ll develop a more compassionate view towards those who can’t handle the heat. Right now, I’m still on fire so I need to find others who will at least try before I’m turned into a charred husk.

I am asked, “what is it like?” and the answer is, “awful.” Beyond that response, I struggle to find words. I can’t make sense of it, I just live with it. It is like being in a glass box, where I am asked to describe living in the box but I can’t see it from the outsider’s point of view, because I’m in the box. I only know it from the inside, and I would need to be outside the box to think about it. Fire steals my language, and when I am able to talk, usually it’s gibberish. The way I knew myself is no longer visible, and I have no construct to replace it with. Eventually it will be revealed, but not on my time scale or terms. That is life inside the box. A well-intentioned outsider asks questions about the box, but it is the one thing I can’t speak to, which reinforces that this box exists, making an invisible wall between us.

This leaves two choices for the other, to be in the box or to stay outside. Others who know life in such a box don’t ask questions about the box. They just ask questions about me. The box is taken as a fact, one that isn’t worth us spending time on. We might have a common, temporary curiosity of, “is yours a cube or a dome” but we already know the box to be as present as the air we breathe. These boxes are not common, thus more people will be outside the box – but that means the other has to recognize that they are outside, and this is not a personal deficit. This is again an acceptance of fact, of condition. You can’t be inside it, and you wouldn’t want to be. No one should be. Don’t try to smash it, cover it, put a pretty picture on it, or think you can free me from it. All that is a waste of time and energy. I am learning to live in it. Odd as it may seem, I don’t have a need to fight being in there. It is making me into someone else, in ways that I will and won’t like, but I don’t know who that is yet. Don’t try to step inside, or run away. You might be afraid that being outside this box changes us, and it probably will. But I’m inside, and I can see you; I just need you to stop long enough to see me.

Write it out…

Not long ago I listened to a radio interview. This was one of those entertainment pieces, the kind of thing you listen to because it isn’t about politics, murder, or other such real-life nastiness. Asked to make sense of a recent experience, the guest offered the simplest of replies:

“It’s hard to say…I haven’t even written about it yet.”

This little gem caught my attention so much I didn’t really hear the rest of the interview. The details didn’t matter; what stood out was this tiny, piquant glimpse into how meaning gets made – the process of coming to terms with an experience. It also likely grabbed me because here’s someone else suggesting they have to write about something in order to make sense of themselves.

Admittedly it lands a little close to home because I’ve found myself trying to make sense of several things lately but lack the words to describe it. This blog has been the place where I write “randomly”, letting words fall out in order to see what’s rattling around in my head. But with recent events, that hasn’t happened. The words don’t seem to land on the page and continue floating around in space, morphing into other shapes or sometimes disappearing altogether.

This is your brain…if your brain were an egg talking to itself

I’ve guessed it’s because the events are happening too fast, too quick for my brain to fully pull together. Or maybe it’s not a brain thing – maybe the issue is that these things are all too visceral, too emotional, for the brain to catch them. There are feelings and motion, but sometimes the event demands a reaction and the brain just has to respond to what is there without having the luxury of making sense.

Curiously the events I’ve been thrust into lately are brain related in other ways – a relative expressing a high degree of neurocognitive disorder (that’s dementia to everyone else) and my own battle with migraines. The brains have gone on strike, it seems.

Attempting to reign mine in, we tried medication that resulted in me having a great deal of difficulty completing sentences. Try writing a book in that condition. Anomia (inability to remember the names of everyday objects) makes it kinda hard to complete a paragraph, or at least construct one who anyone other than the author can understand. I couldn’t even remember the word “anomia,” which meant when I tried explaining this to my employer, I sounded something like this:

“It’s sort of like you are coming up to what you know is supposed to be there but you can’t quite find it so you skip over it hoping you can come back around to it and it’ll slip into place, but it doesn’t really happen so you’re just left looking at this empty hole knowing something is supposed to be there but you’re the only person who knows what it is.”

And then your employer tells you to go home because they think you’re drunk. My brain had a great laugh at me that day. It also gave me a migraine.

The fact that I can write this suggests a change occurred; deciding the cure was worse than the problem, we discontinued that particular medicine. But this is a continued experiment – and gets into that euphamistic “lifestyle change” thing. I’d have loved it if taking a pill were the only thing one needed to do to conquer something like migraines. But as with most chronic health problems, the treatment isn’t a 45 second commercial promising bliss and small-print debilitating side-effects. It’s a long process of discovering what could work along with what doesn’t – which means learning a lot of what you thought was okay about how you live your life falls in the “doesn’t” category.

For the short time my brain was on holiday, I took a brief walk into my relative’s dementia land. I am not in any way claiming I had the experience of someone who is falling into a cognitive decline. What I am claiming is that as the medicine’s side-effects starting taking away my ability to think, react quickly, solve problems, and use words, I realized that the me I thought I knew was disappearing like a ghost. It was terrifying and I had no idea what was supposed to be in its place. An athlete who loses their leg, a painter who loses a hand – it is an experience of being confronted with our primal fear that without what we can do, we become no one.

I’d like to say that I plowed forward and found myself, but the truth is I called the doctor and said “I can’t handle this.” A 3-day migraine attack was better than disintegrating, and at least I know how to survive the migraine. So I don’t have a pithy answer for how to deal with that harsh look in the existential mirror. But I also don’t think there is a pithy answer – it is something that takes time to figure out, presuming it can be figured out.

When I sit with my relative, we have conversations that follow no chronological, or any-logical, order. The bedroom we sit in morphs into a type of Tardis as we travel across space and time:

“Are you here to help me pack?”
Where are you going?
When do you leave?
“Any moment now. We have to get on the plane.”
How long have you been here?
“I just got here.”
Why  are you going to Ohio?
“For work. Shouldn’t you be in school?”
I don’t have school right now.
“Did you pass all your classes?”

And on it goes…in the same sentence I am a working adult, a grade-schooler, a parent, a teenager. Dead relatives are resurrected, and last night’s baseball game is recalled play by play. My children’s names are forgotten.

I’m living in the sandwich of my generation, but I can’t tell you anything about how it tastes. No one really asks for this, but resentment seems pointless. How do you hold a grudge if the mistakes of the past no longer exist? The way you knew yourself in response to this person must also become someone else, because the person before you floats trans-dimensionally and you’re just trying to not get lost. There are many people living in this, and information exists to explain it. And yet, if you ask me to make sense of it all…

I haven’t even written about it yet.

When not writing is writing…

necessary distractions

I find it ironic that my last post was meant to rejuvenate my blog, get me back on track, and increase my writing volume. Here it is, one month later, and I’m now composing post #2 about my writing journey. That’s about the same pace I was on before I “rebranded” my blog, and also a great example of how rebranding is a big lie, directed mostly to ourselves.

Curiously my lack of blog posting is not an expression of a lack of writing. Since my last post, I managed to 1) finish my fiction novel, 2) finish and submit an academic article, and 3) finish and submit academic book proposal #2. That’s not bad, really. I did not make much progress on academic book #1, the one I’m supposed to be writing. But it is fair to say I had to get #’s 1-3 dealt with so academic book #1 could move to center stage.

That seems like another great lie, that we have to clear off the plate in order to start the next meal. I have told myself on plenty of occasions, “after item X is done, I can start the next thing.” It’s just that “item X” can become anything, from preparing a syllabus to weeding the windowbox full of old, dead flowers that I don’t like in the first place. Over the last several years, I’ve slowly learned to make item X be more relevant and less distraction, but I have to admit that sometimes distraction is a good thing. Sometimes I really can’t clear my head unless I complete the deluxe enhanced expanded expansion pack for here unnamed Xbox epic dystopian role-playing game. Sometimes I need to know what will happen if I pull up the loose, flappy sliver of wallpaper. Sometimes I can’t sleep at night unless I binge-watch all 12 seasons of senseless crime drama-come-sitcom-com-secret sci-fi romance thriller show. I must scroll to the end of the “now trending” Netflix column or life will be incomplete.

And whoever invented the “autoplay” default setting on YouTube should be beaten about the face, or given a huge raise.

What was I saying…oh yeah, distractions. Anyway, I imagine most writers suffer from self-induced ADHD on a pretty regular basis. In actuality, it probably is a good idea to include some distraction time in the writing schedule. As some famous neurologist probably said, the brain never stops working. Many times an idea has worked itself out during these periods of nonwriting, and it appears later on the page.

Of course, one does need to make oneself write. The idea that writing just springs forth like a geyser is the biggest of all lies, the dumbest of all “ideals” to live up to. Writing comes from writing. Admittedly I am not as scheduled as some of my peers, although this does not mean I am not as disciplined. My life circumstances mean I can’t hold a fixed timeline, but I can designate which days of each week are devoted to any particular project. Sometimes on that day, I write; other times I research, and other times I doodle. Each of those activities moves the project forward (including doodling, my brain’s best way of working through abstractions). When words do appear on a page, I don’t concern myself with whether or not they are the “right” words. Sometimes I have to write some pure shite in order to figure out what I meant to say. Other times I look back and wonder what the hell was I thinking. But it all progresses, and most importantly I can feel and see that progress, which makes my next designated project time feel worth it.

Next up is outlining Chapter 1 of academic book. That means looking at what I’ve compiled and determining what else I need. So not sure if I’ll write a paragraph that day, but the work of the project continues. Note that focusing on these little steps keeps me from getting distracted by the big fear that no one will want to read the book. So far, that’s been the real bulwark to working on the project. While finishing the other 3 projects did provide an excuse to stay away from the book, their completion also gave me something to bolster against that fear – namely confidence. I don’t know if anyone will read academic book #1, but I do know I can write it.


(and a shout out to R. Keith Sawyer and Paul Silvia, two authors whose work on creativity and writing has helped inform my writing. Ok, reading their stuff was also a distraction, but one that continues to pay off.)


The Business of Writing…

This blog, like many creative things, has evolved since I started it 6 years ago. (Six years! Did that happen? You’d think I’d have more followers. Maybe I need to post more kitten and puppy pictures. Here’s one:)

kittens and puppies

Anyway…I’ve found having a journal of sorts lets me work out all kinds of bumps and wiggly bits clattering inside my head. It’s sort of a mental massage; occasionally it’s of the soft, fluffy Swedish type – other times it’s a full-on deep tissue-come-rolfing battering session. What results from this written free-association sometimes helps me organize my ideas, other times process complicated emotions, and occasionally make avant-garde garbage. I don’t claim to be an amazing artist (which is probably good if we get back to that lack of followers thing). But writing, in general, helps me do stuff, whether it is providing a simple creative outlet or a sounding board for generating ideas that turn into other things. And yes, it has also been a place for me to rant on about crap because if I didn’t do that here, I’d be screaming in the middle of a bridge on a pretty regular basis.

My intent at this point is to use this platform to maintain some sort of personal accountability as I’m embarking on my first book. I’ve always had a creative writing streak; as such I have stacks of incomplete short stories littering my home office (and basement, attic, bookshelves, and just about anywhere else writers store their half-baked creations. Are there others out there who can’t seem to find a way to end the story they started, but also couldn’t dream of throwing it away?). But now I have an official contract, one that says at a specified date I am to deliver a finished book some 70,000 words long.

70,000 words?!? Am I insane? Why did I sign up for this. What was I thinking – now I have to write and FINISH the damn thing. Giant OMG in supercaps, what have I gotten into?

This is exciting, and it means a publisher and hopefully others want to read it. Yet in the middle of exciting sits scary, because 1) I have to get it done and 2) once it is done, all the critics will get a chance to rip it apart. It may seem premature to fear rejection before the book is completed, but it is likely because I’ve been down the rejection road that fear looms in the background. I’ve had my share of bad critiques and I can accept that criticism can make your work better. However, that doesn’t mean I like going through it; you don’t really want your partner to tell you how fat you are when the clothes come off.

I do believe I will learn a lot about this process, and likely myself, before this is all over. That’s part of the motivation to do it; I grew tired of asking myself if I could and decided to just do. So in some ways, I can live with it if the book flops. But I don’t want to find myself years from now asking why I never finished it, or worse, why I never started it. In that way, I’m already on this journey, and I don’t know where it ends.

So back to writing and this blog – I hope to chronicle the process (that’s so meta, to write about writing) so later on when I feel discouraged I can look back and remember what I’ve done. Plus, it’s an old trick – invite others into the process so it’s no longer me alone with my thoughts; the project is in the open for others to be aware of and ask questions about. And I’m sure I’ll write about other things as well since my brain will continue to fill up with clutter and need some occasional clearing out. But for now –  on to the business of writing. First – I should make a list of what to do. I should make a list of what not to do. I should make a list of lists about what to do and not to do. Oh look, puppies. What was I saying? What am I supposed to –

(I suppose if any other fellow story-makers, book-writers, or general project-embarkers happen to be out there and want to know someone else is out here freaking out with them, feel free to “follow,” or drop a comment from time to time. )