BrainGirlAndCat does video blogging. She used to be on Twitter, and I came to know her through BIST, I think. The Brain Injury Society of Toronto recently tweeted out her latest video.
2019-07-08, 9:45 AM
“Every day is like Ground Hog Day,” From her home in Ireland, Brain Girl shares the story about the emotions that come up after finally getting an neuropsych assessment 7 years after her TBI. @ShireenJ
– we think you may have some things to say about this
It took me awhile to get to it. I have routines, try to schedule tasks or ToDos, try to keep to my schedule, but maybe it would be easier if my life was like Ground Hog Day. It isn’t.
There’s always something. A jackass, always one around in a city. Mice peeking out at me. Drivers whizzing up to the pedestrian crossing to block me safely crossing just in case they can insert themselves into a stream of traffic. My brain suddenly deciding not to read. Me having to think hard about which part of my routine I forgot and fix that to get reading again because no health care professional nor anyone I know in my social life wants to learn my health care routines because, you know, learning outside the box is hard and only the person with brain injury should have to do that. Giving up reading and practically the next day being catapulted into a life-altering reading comprehension program. Receiving my very first review of my revised concussion book. Promised money not coming through and digging through pockets and counting dimes because I really gotta have my coffee. Back in the early brain injury day, it would be creating minor fires or floods because of my slow processing. Now I just create floods because I still can’t process what my senses are telling me and problem solve quickly enough. Fun times cleaning up instead of staying in my usual routine . . . well, when does my usual routine stay monotonously the same? People suddenly pop into my life, change my routine, sometimes disrupt it, then disappear. Definitely not Ground Hog Day around here.
I can so identify with lack of joy, though. I almost had it. Almost touched it. Almost.
It’s surreal. It seemed like the whole summer stretched ahead of me, five nights a week spent in intensively retraining my brain to read with comprehension, two nights recovering my energy before once again being immersed in Visualizing and Verbalizing the Lindamood-Bell way. I met and worked with six, seven different clinicians. Suddenly, tonight, it’s over. After not seeing her for awhile, the clinician I began my training with, I ended with. It was a full circle moment! At the end of my last hour, I received my final progress report from my Lindamood-Bell Australia consultant (also the Associate Director of the Double Bay resource centre) and a lovely send-off, complete with a signed certificate that they’ll mail me.
“When you say I’ll be able to read a book like I used to (before my brain injury), do you mean a book at the level of an Agatha Christie? A PD James? Neuroscience article? And/or philosophy of mind textbook?”
“In creating your recommendations for instruction, the goal I had in mind was your ability to read and process literature at the level of your potential, and at the level that would support research and continued learning for your writing. Especially with the full recommendation of 120 hours, I picture your ability to access all of the examples you provided in your original question. Our instruction may start at a lower level, but over the daily and weekly sessions, you’ll see an increase in the amount of language (text) you are processing as well as the complexity.”
That’s exactly what they did, except the Associate Director of the Double Bay, Australia resource centre knew I could afford only 80 hours of instruction; she set goals for me to achieve what I asked within that ambitious timeframe. I remained skeptical even while meeting all the goals on time as I progressed through the summer. But I didn’t just cross my fingers and wait for them to prove their assertion. I worked with the ADD Centre to ensure my brain biofeedback training would complement my reading comprehension retraining. My brain trainer told me what was most important was for my weekly brain biofeedback to ground me. I also used my Mind Aliveaudiovisual entrainment device a couple of hours before each nightly session to entrain my brainwaves into SMR and Beta frequencies, the ones that show a relaxing effect in people with brain injury and enhance the thinking brainwaves (beta frequencies of around 18Hz). I replenished my brain with glucose aka ice cream during the five-minute break between hour one and hour two of the reading retraining, as well as afterwards. Brain cells use glucose for energy; this past summer was steamingly hot, so ice cream was a must. I parked my brain more and more during my two days off. Other things got a little behind. My priority was reading. My energy needed to go all to reading. This was a last-ditch shot at getting my reading comprehension back; it was a rather expensive debt-exploding shot, too.
Lindamood-Bell Minnesota also said: “Since our vision for instruction will include increasing the volume of information you are processing, our goal is to decrease your fatigue, by systematically and consistently reinforcing independence with visualization for increasing lengths of language. Just like any foundational skill (ex: learning a new language, learning a new instrument) practice and continuous exercising of the skill, makes it more automatic. Instruction will stimulate and strengthen this process for you, but practice outside of sessions and beyond instruction, will also be key. You may still need to take breaks, but I anticipate the length of breaks and the frequency of breaks will diminish as you, on a daily basis, start reteaching your brain this visualization process.”
That is exactly what happened. When I began back in July, a sentence seemed super long to visualize and reading a whole paragraph all at once seemed impossible. As of tonight, I can read — that is, visualize and verbalize, denote and comprehend — four pages of a book, one page at a time in sequence, with less fatigue than when I was visualizing and verbalizing a sentence way back in July.
Even as I experienced progress, I remained concerned about being able to practice daily on my own. I worried about all this effort and money I really didn’t have wasted if I was unable to practice and lost any gains I made. People with brain injury have both motivation and initiation deficits. If someone tells me to read a page, and I’m able to do it, I will. But that kind of responsiveness is not the same as me being able to motivate myself to read a page and to initiate the action of reading a page. Too many health care professionals equate the two as being the same. They’re not. Responsiveness is not motivation. Responsiveness is not self-initiation.
Well am pretty chuffed. Picked Lions of Al-Rassan to read tonight (Sat will read Philosophy). Set self goal of 3 pages using Page by Page process. So engaged (whoa!) with scene, wanted to finish #reading it. Read 4 pgs. My main idea: too long. Only 3 HOT questions. #braininjury
I use a variety of technologies to initiate me. But nothing beats a fellow human being. When we speak, my neurodoc is now asking me to give me the main idea and a couple of pictures from my novel reading and my philosophy reading. My mother has bought the novel I’m reading, The Lions of Al-Rassan, and we discuss the plot, the characters, the action every so often. Accountability is so important.
But so is reward.
One paragraph philosophy takes about same time as #reading one page of a novel, when just timing how long eyes take to read. Brain takes an additional double time for novel but triple for philosophy. But when done both I CAN SEE THE BIG PICTURE!!! #braininjury@LindamoodBell
I was out and about with my CNIB orientation and mobility trainer and found myself near Soma Chocolate. I needed more of their kick-the-brain-awake hot chocolate; as I picked some up, I spied their chocolate covered dried cherries. Ooohhh. The perfect reward. One chocolate-covered cherry per page of novel read or per two paragraphs of philosophy read. That’s how I managed to read four paragraphs of philosophy this past weekend, not sweat through only two paragraphs and call it a day. I rewarded myself with two chocolate-covered cherries — soooo good — but the better reward was unexpected.
I connected what I read with what came before. I saw the big picture unfolding. I comprehended how each of the writer’s points connected. I saw his philosophical argument beginning to unfold.
I have not been able to do that before, seeing the big picture like a carpet unrolling, showing me its beautiful, intricate pattern. It wasn’t just that I comprehended it, I saw it. This is what visualizing means. Create imagery, and you’ll remember and understand.
For the first time this weekend, I felt confident that I will continue to progress on my own.
Lindamood-Bell Australia told me I have partial proficiency in the application part of instruction because I need prompting with my higher-order thinking questions — yeah, I find it tough to ask myself these kinds of questions, a definite side effect of my brain injury — and to be more precise in my main idea. I’d achieved succinctness in my main ideas with Lindamood-Bell texts, but it’s not so easy with The Lions of Al-Rassan or Philosophy of Mind texts! They also noted that with the novel and philosophy, it takes some discussion between me and the clinician to make my images clear. I find creating imagery for concrete details far, far easier than for thoughts, flashbacks, concepts, abstract ideas, which are abundant in my application text. They did note that even neurotypicals need to pause when reading philosophy, reflect, go back, review vocabulary. It is not light reading for anybody.
I am absolutely amazed and stoked that I can finally — FINALLY — acquire and retain new vocabulary using Visualizing and Verbalizing!!!
They said that they don’t know what my reading will look like in the future. Will I be able to read a chapter and not be exhausted? They do know that, given how I have responded, I will continue to respond (as long as I practice). But is there a ceiling? They don’t know what the ceiling is or if my brain injury means there’s a limit to how much I can respond. The challenge for me will be how much language I can process as well as my reading speed. It takes longer to read when I have to break up a page into paragraphs and need hours to recover afterwards, like with my philosophy text. This limits me, there’s no doubt, because I still cannot keep up with others who can consume pages and/or chapters of a textbook or novel at one sitting, something I need to do if I take a course again. Maybe if I’d been able to afford 120 hours, I could have progressed to reading a whole chapter under their guidance before being out on my own . . .
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I will be re-evaluated in a week. But whatever the results, I know experientially, and my health care professionals have observed, I have improved dramatically. I have regained in eight weeks what I was unable to in 18 years using standard medical care or electrophysiological care for brain injury.
All of a sudden, my first week at Lindamood-Bell Australia was done! Never so happy as to hear “we’ll stop there” as time was up in my second hour Thursday night. Yet vying with the fatigue was this alertness, this up state that my neurodoc described as excitement, excitement at starting something new and at the possibility that finally at last my reading will return. It’s a strange feeling, two opposite states co-existing in one brain.
The fatigue comes from pushing damaged circuits in my brain to work. The excitement and alertness arise from the circuits I’ve felt being healed the last year or so through brain biofeedback at the ADD Centre, particularly after we began to inhibit 16-20 Hz at the PZ location.
And now I have a new thing to report progress on!
One thing to note here: the instructors (clinicians) and consultants work as a team. It reminds me of the Toronto Rehabilitation Institute where all the health professionals I worked with kept each other informed of my performance, their observations of me, and any issues that came up.
My Lindamood-Bell Double Bay, Australia consultant emailed me my first progress report (see image). I flew through steps one to three, which I blogged on on day one.
Sentence by Sentence Imaging is either the instructor or me reading one sentence from a one-paragraph story and then me describing the picture I see. The instructor will sometimes ask me questions about that picture, details like describe the man or what do the chicks in the box look like or how many people are on the field. When I have a stable picture in my head that through my description creates an image in the instructor’s head, we move on to the next sentence. At the end of the paragraph, I retell each picture I saw for each sentence in sequence. Only once or twice toward the end of the week, did I get details out of order or forgot something. Once I’ve given the “picture summary” for each sentence, I give a word summary based on my pictures — not the same as recalling the actual words in the story, something I can do easily in the short term. Then I give the main idea. A short sentence with three points, leaving out extraneous details but keeping in a key detail(s). Discerning what’s extraneous and what’s key is not always easy! I can get a bit verbose.
Sentence by Sentence Imaging with Higher Order Thinking introduces questions after I give the main idea. These HOT questions are designed to get me to reach conclusions, inferences, make predictions, think about the abstract aspects of what I’ve read.
Multiple Sentence Imaging with Higher Order Thinking is the same as Sentence by Sentence, except instead of reading one sentence at a time, I or they read two sentences at a time. Sometimes the reading finishes with one sentence to reach the end of the story.
The first stories I read in the first three days had concrete things and few details to picture. On Day Four, my consultant interrupted the first hour to have me read one paragraph because the team had noted I was doing well. I read the paragraph, as opposed to her reading it to me, because I find reading harder than them reading to me. So of course I had to do it the most difficult way! She wanted me to recall it using my natural method, ie, recalling the words themselves. I zipped through my recall. No problem-o. Summarized every part of the story. Then she began asking me questions about the images I created. Well, um, not too many. At first, I was able to easily answer, like when I described the restaurant patron. Then it became apparent that other elements, like the chef, I hadn’t created images for or partial ones, like a closeup of a couple of fries, not the plate or bowl or whatever they were of fries. When she asked me for a word summary based on my images, the summary didn’t reflect the story. She noted that the wealth of my background knowledge props up my reading, but I need to generate images from the story, be able to shift the images as I learn more as the story unfolds, and remember the images and story based on those images over time. I need to also not be so hard on myself. They don’t expect me to achieve 100 percent on the first take! Yeah, I know. Others have told me same. I have eased up on myself over the years . . . maybe.
Based on her quick assessment of my paragraph reading, she had the instructors increase the story difficulty by one level. And if there were three sentences left at the end of a Multiple Sentence story, I’d read all three instead of two and then one. And on day five, during the second hour, I was asked to choose the colour of the first square of felt used. Each square is a different colour, and they’re placed in my view prior to reading a sentence or multiple sentences to represent that sentence(s). I’m not sure of the significance of me choosing the colour of the first square (they chose them for the subsequent sentences), but it does introduce a node of decision making, not exactly my forte.
So to sum up the first week: I did steps one to three automatically and easily. Steps four, five, and six were the focus of the first week, and I reached proficiency up to level five and partial proficiency at level 6.
For next week’s goals, I will have push steps added to the core program of Sentence by Sentence and Multiple Sentences. A push step is exactly that — to push my brain. The expectation is that maybe I’ll achieve 40 percent, but the next week, I’ll have gotten up to 70 or so. The push step will be to introduce reading and imaging an entire paragraph at once. My consultant is not yet settled on whether to up the level to 12 for Sentence by Sentence and Multiple Sentences before moving on to Whole Paragraph Imaging with Higher Order Thinking or move to Whole Paragraph first and then up the level. She’s going to try one or the other with me next week. Either way, from Whole Paragraph on, we’ll go up to level >12. Also, it’ll be at least a couple of weeks before they’ll start working on acquiring new vocabulary and more abstract language and week four or five before introducing multiple paragraphs.
My next-step-on-this-brain-injury-journey-related tweets
It feels like the weekend because the sun and birds let me sleep in, aka past 6am. Also, my first week at @LindamoodBell is over! Can’t believe it went that quickly. I want to do absolutely nothing all day.
Storify, bought out by Adobe, shut down operations, flinging my Storify and everyone else’s into the virtual trash bin. Fortunately, the internet has helpful coders who supplement the pathetic FAQ Adobe created, and I’ve recreated the Storify here below as an archive.
I attended the Healing The Brain conference on Wednesday, May 24, 2017 as a brain injury survivor and live tweeted it, both to share with the world and my way of taking notes. I came away pumped with a clearer way of seeing the brain and a renewed purpose for revising my book Concussion Is Brain Injury. Doidge spoke eloquently on why neuroplasticity can be harnessed to permanently treat brain injuries and Thompson on one effective way to do so. Brain maps prove people with brain injury/concussion have real problems and are not malingering! Read the tweets for all the deets!
Well, it had to happen some time. I’ve restarted two-thirds of my brain-injury-care appointments. As of this past week, I have returned to using the TTC on my own – solely to get to brain biofeedback. So I’m not exactly using the entire TTC on my own, just one well-practiced route!
As expected, it took me a lot longer to get there by myself than with my CNIB orientation mobility trainer, even when he was shadowing me and out of sight. My slowness wasn’t just because it’s scarier going solo, it was also no one was around to push me to keep going: I’m dizzy? Sit! Brain feeling the effort? Sit! Had enough? Sit! Or lean against a wall since benches aren’t plentiful in this progressive city of ours.
One of the nice things about the boomers getting older is that benches are at long last popping up on some streets. Still too few though.
It took me double the time to walk to the ADD Centre from the TTC sans my mobility trainer; sooo about, uh, hoo boy, a bazillion times slower than prior to my eye surgery. Well, OK 5.4 times slower. On the plus side, last week I was only 1.2 times my normal speed in quiet, now-familiar areas where I’ve practiced my walking many, many times. And this weekend, in the same quiet areas, I’m pretty much at my old speed for about 15 minutes of walking sans any rests and except for crossing streets.
Anyway, my brain trainer told me when I asked that my CZ SMR brainwaves have dropped since June.
SMR: sensorimotor rhythm or 13–15Hz, the foundational brainwave in the area that loops from the outside of the brain to the critical thalamus deep inside. They are the brainwaves of relaxed, focused attention.
Social isolation takes a toll on the brain. It should be fucking obvious to every human being who looks beyond their navel, but apparently not in North America with its cult of busy-ness and every person should shut up about and look after their own disability. Isolation is either chosen (some people have been taught it’s safer emotionally-speaking to be alone) or imposed when family, friends, neighbours, health care workers take zero initiative to reach out to the person who’s lost their independence to ensure they don’t lose their biologically-critical social life too. Small towns and England are better at reaching out or as one community worker put it: reaching in. Reaching in to the hurting person, the suffering person, the ill and injured is how we prevent brain damage from social isolation. But not even churches in the big city of Toronto are good at it, preferring to wait for parishioners to call up, nag, beg before fellow congregants can look away from their look-how-compassionate-I-am-I-volunteer-for-the-homeless (or African communities) Pharisaic stance to spare a glance at the suffering in their midst and do something about it. The ones who are most invisible are the ones they should be reaching in to. But that takes not following the disciples to town but following tired, hungry Jesus to the woman at the well – compassion plus effort, don’t you think?
“@ShireenJ: Guest on @CBCOntarioToday: “As a community, it’s OUR responsibility to be reaching in.”As person w #braininjury rarely exp’d that. WldB nice”
Anywho, my brain trainer and I have re-established the routine of 30-second assessment, 3 minutes of HRV (heart rate variability), and two screens of biofeedback: inhibit delta-theta (2–5Hz) and busy brain (24–28Hz) and enhance SMR (12–15Hz) and if possible gamma (39–42Hz), ie, gamma when we can use the computer that allows for two-display biofeedback screens. My muscle tension was above 2 this past week but came down nicely, as did my delta-theta.
I’m pushing my neurodoc and the ADD Centre to see about treating my reading difficulties better. To that end, we did a 3-minute assessment over Broca’s area at FP1-F3 and 3 minutes at the corresponding area over the right hemisphere at FP2-F4.
It’s been suggested to me that getting a diffusion tensor imaging scan would aid in finding out exactly where the injury broke my reading cognition. A DTI will show the health of my neural networks. The problem is that whereas out west they offer that MRI-variation scan clinically, in Ontario they do not. The Kathleen Wynne government doesn’t pay for it clinically, apparently preferring to spend health care bucks on things like more administration since 39% of community care going to admin is not high enough and managers are way more important than doctors, nurses, therapists, and scans, don’t you know.
So we may have to continue to guess the best we can and wing where to treat the brain while continuing to practice reading. Meanwhile, my neurodoc isn’t into facilitating communication since medicare in Ontario doesn’t pay for phone calls, emails, texts, and he doesn’t believe in answering questions left on voice mail or even acknowledging receipt of any communication. So tough shit if you keep forgetting to ask things when see him, can’t read notes to help you remember, and email (or in our security-conscious world, text) is only way you can express yourself and actually get it done. Gah. So fed up with it all.
Back in the day, @BrainworksRehab was active on Twitter. Weekly, they thanked various tweeps for RTs of their tweets. I decided one day to look for people to follow not just react to those who followed me; so I used to check out the tweeps Brainworks Rehab thanked. I looked for anyone with a brain injury whose personality and thoughts came through their feed, whose tweets were worth reading. That’s how I found @HammondsHead, what Richard used to call himself on Twitter. Seven days later I responded to one of his tweets about getting on with kids better than adults because I so related to that. Boy, did I relate!
@HammondsHead After my brain injury, I got along with kids a whole lot better. I felt so comfortable with them too (and them with me). :) — Shireen Jeejeebhoy (@ShireenJ) September 28, 2012
I followed him. And he followed back.
At some point, he changed his Twitter handle to @MyABI_byRH – that stands for My Acquired Brain Injury by Richard Hammond
A year later in 2013, his openness about his brain injury, his desire to get better, and him trying mightily yet not quite knowing how to overcome obstacles, sparked in me a desire to create a chat community for people with brain injury similar to Twitter chats I saw for people with diabetes. Because of a recent experiment in enhancing gamma brainwaves, I had become loads better and so felt I could do this.
I created #ABIchat, and Richard participated. But even when he couldn’t, his upbeat vibe for it encouraged me.
@hammondshead No prob! One day, it'd be nice to start a support chat gp for #braininjury like ppl w other health probs hv on Twitter. :)
Unfortunately, he suffered another head injury only a few months after we got #ABIchat off the ground, and I did not have the energy nor the ability to keep it up (a typical brain injury problem, which I really wish would go away).
“I’ve been made aware of this account by my sons. My son Richard uses this to post about his experiences as a (cont)http://tl.gd/n_1s0arc4” – 6 Feb 2014
But I kept following Richard, although for a long while, his brother Scott or his Mum tweeted on his behalf after his second head injury – keeping up his tweets about his brain injury journey was so important to him that his family tweeted for him though they were not as into Twitter as Richard was. It was my first glimpse at how unconditionally his family rallied round him. I honestly didn’t expect to see him recover to his former baseline. But he did! And I believe it was the daily, active, loving support of his family that made such a diff.
It’s something too many of us don’t have. And I believe it gave him the bedrock he needed to keep tweeting and persevering after such a devastating setback.
It was a delight to see him sneak on to Twitter and begin to write his own tweets again when he was supposed to be resting. And it was a bigger delight to see his written language skills return and to see his thought processes begin to sharpen and mature.
But though the re-injury set him back, Richard never lost his genuine positivity. He invented his hashtag #adaptandovercome not as some sort of feel-good motto I see too often on Twitter but as a natural outflow of the way he viewed himself in the world. It wasn’t just a phrase, it reflected his thoughts, his essence of innocence, his determination and drive to improve, his desire to nurture and his compassion for others suffering from brain injury – well, anyone really, including remarkably, people who misused his trust. His compassionate-forgiving spirit flowed through his tweets to all of us who read them.
This past Spring, he unexpectedly became a father. Though scared, he didn’t hesitate to be there in every way for his daughter, even before she was born. He loved her like crazy; in only a few weeks, she changed his focus. She became, for him, the reason to redouble his efforts to #adaptandovercome.
“I have such a fantastic life right now, and such a beautiful daughter. Luckiest man on earth.” – @MyABI_byRH 20 July 2016
I’m not often told it might be good to avoid Twitter or to give it a break, but when I am — and when others with brain injury are — it’s by people not on Twitter or who have a lurking-only account. And who don’t know or understand how I use it.
They’re unhelpful because they don’t understand how Twitter works. And so they advise the blunt instrument of total avoidance instead of helping me or anyone with brain injury avoid the “negative” while allowing us to still play in the fun social sandbox.
One reason us people with brain injury are told to stop is because of “oversharing.” This is part of a larger discussion about our cultural shift to emoting more in public, to creating closer ties even with people we’ve never met in real life, to the trolls among us and how to protect ourselves from them. But the oversharing I’ve seen people with brain injury are criticized for is nothing compared to what some non-brain injury people do. I think the advice to us in this case smacks a bit of the patronizing attitude so systemic towards people with brain injury. Talking out consequences but leaving it up to the individual to decide if they can handle it is way more respectful than telling them stupid stuff like, “what will your daughter think?” Maybe their child will realize their parent is a suffering human and learn some compassion.
Another reason given to avoid it is when we’re bothered by tweets from a certain individual. In that case mute block report that individual is the better option, and I’ve written about that before.
Another reason can be overload. This is a valid concern. We people with brain injury are prone to sensory and informational overload. Couple that with impaired ability to stop, and you have massive energy drain. Years and years ago, I began to turn off the computer and go offline Saturday night and not turn anything back on until sometime on Monday (very occasionally Tuesday). That broke any addictive cycle that had been building up over the week. It also gave me the rest I needed.
The iPhone has complicated things for me because it has apps on it that I find restful or distracting. It is a computer but not a computer. It’s my second brain; it helps me function and relax. But the iPhone has the ability to connect to the online world through its data connection, and with the phone plan I have, I don’t worry about data costs. Deadly!
Worse, brain injury tends to kibosh self-control and habits are hard to keep.
But I’ve held this habit for so long that I don’t forget it, like all my other ones. And if I do sneak online, this habit keeps me from not participating. One complicating factor is I do need a data connection to message people — messaging is the new phone calling and, frankly, a lot easier to keep in touch with others no matter one’s schedule. But I’m not exactly a social butterfly anyway.
And sometimes no matter who you are, just like we all need a vacation from work or from family, having an annual or every-four-months week-or-two-week-long vacation from Twitter or Facebook is a good way to recharge the social batteries.
But for day to day, instead of wholesale avoidance, the health care provider should be suggesting:
Focus on your Twitter list of close friends.
Just look at your hobby list.
Muffle the political tweets that are sending you ballistic until you’re ready to get back into the game.
Follow your favourite Twitter chat and then turn Twitter off till the morning.
But they cannot unless they use social media. Just another reason why the divide is growing and causing friction between the patients on social media and the health care providers and friends and family members who are not — to the detriment of the patient’s social and emotional health.
A little bit of a hiccup in the Twitter timeline. But it’s early days, and so I was able to redo @BobbyFlax’s tweets. Here then is the Twitter portion of Chapter 3 of my #nanowrimo novel in progress, Chantie: