Am very proud and excited to say the new book DIS is available on Amazon!
Promotion:
*Update Notes As of August 4th*
— The paperback version of the book is now published as well, did that so there’d be a bit more affordable option.
— The hardcover price has been reduced, through the end of the year 2023, after which the price will likely go somewhat back up.)
Am willing to try an bring the price down slightly, for direct sales.
So, if you want to order the book from me directly, please just shoot a DM my way on Instagram or Facebook (both accounts are under the name: Narcoplexic ) letting me know you’re interested.
For direct sales, I am happy to put my signature in it and a note too, if desired just ask for such.
The price that I had set the hardcover book at on Amazon was $100.00 which I know is a lot, currently the hardcover is $54.99 and the paperback is $38.99.
What is within the book:
The book is packed with art.
The hardcover size of the book is 8.25″ x 11″ with bleed and it consists of 88 pages.
There will be a paperback to come, at a somewhat cheaper price.
Who knows, maybe I’ll even break the book into smaller books, of the sections; if it seems right to do(?).
For me, this book feels like a lifetime’s work, a big accomplishment.
I feel that it is powerful in both the imagery and the meat/heart which are the breakdowns that I make in it regarding living with severe Cataplexy.
It all comes from (the 28) years of living it unknowing to what it was, though very tuned into there being real matters going on with me all that time, along with now over 15 years of knowing, and having been deeply immersed in the subject all those years.
The breakdowns are basically things that have become very apparent and obvious for me, things I have not seen discussed, written about nor really ever mentioned; I feel that my being as psychoanalytical as I am, can be, and have been over the years, is why these dots connected for me and became very apparent.
My hope is that the expert doctors in the field of Narcolepsy, will take in my breakdowns and be pleasantly surprised at certain connections I’m trying to make, it be great if the book were to get some actual recognition.
The process I went through, creating and writing this book:
Really since I wrote my first 3 books around 10 years ago was my first, I’ve known there eventually would come one that would pack a punch in regards to actual ‘insight and clarity into living with severe Cataplexy.’
I wanted to wait for such to come out as naturally as possible, when it just felt right, without force nor effort.
For well over a year now, I’ve been piecing it together; sure there have been some breaks in that time as I work best in spurts and sometimes have to step away rather than burnout or finalize something that isn’t quite fully put together (don’t want to say my 2nd book was like that, but I can say the editing process was difficult and I’ve always wondered about how solid that book is, or comes across).
The beginning process was my making a series of sketches, trying to really portray as clearly and realistically as possible, Cataplexy.
Spent a few weeks looking at images online, looking in medical journals with photographs, watching youtube videos that showed actual Cataplexy occurring, including watching my own videos of myself experiencing Cataplexy.
As those sketches began to come out/together, I began trying to do the same for the other symptoms of Narcolepsy, within another week or two I’d put together many and was starting to feel like there was potential for something to come of them.
Then, I began thinking about how I didn’t want to only focus on Narcolepsy, as the images were powerful and really portray very common experiences, experiences that interplay in near all sleep disorders (aside from the Cataplexy images).
So, I decided that I wanted to make a book about Sleep Disorders with a focus into Type 1 Narcolepsy and especially living with severe Cataplexy.
After coming up with a path for the book to take or go down, I began writing.
There was a slight hang up in getting out, what I felt like was my unique expertise to offer up.
Eventually, I finally managed to in a therapeutic like manner, spew out what is the meat and heart of the Cataplexy stuff.
All of the years of my being online writing response comments to others who’d posted a question or post regarding Cataplexy, really helped me to be able to piece it together cleanly, and get it out in a semi-smooth and legible manner.
For this book, I wanted it to be seen stronger than my previous books and for that, I knew that I wanted to use citations and really try an put something together that held its weight (so to speak).
The citations are mainly in the 2nd and 3rd sections, being ‘The Six Categories of Sleep Disorders’ and ‘Narcolepsy:’ there are facts and stats on all of such.
An idea that my Brother sort of threw out there, as I showed him the sketches I’d come up with, was creating Inforgraphics.
I dabbled around with doing that and came up with a series of what I’d called ‘Recognize Narcolepsy,’ there were 6 infographic pages consisting of an opening page showing the 5 symptoms of Narcolepsy with some sketches of each symptom, then there were 5 additional pages which each was of a different symptom though with a definition and some points along with sketches.
These are in the book though I removed the ‘Recognize Narcolepsy’ from each of the pages, as well as I had to re-orient the sketches because of how touchy the text program is that I used to create the manuscript.
I am very likely to create a set of infographics and/or different posters of these pages, and put them up on my Etsy storefront (why not, right!); whether or not they’re actually “infographics” is beyond me, I’m not an expert on what counts as one, but regardless it was a part of the path I went down as I created this book.
Had a good amount written and was feeling good about it, I’d gotten to a point that felt like it was a first rough final revision, though I was dead set on finding an editor.
Though at this time, I also was thinking about trying to go to the Narcolepsy Network annual conference (this was ~October ’22) to show some people and get some feedback, I thought maybe I could complete it before the conference.
Preparing to attend the conference, I’d ordered some ‘proof’ copies to take with me, I received them and was about to begin packing to hit the road to Atlanta, where the conference was going down the upcoming weekend.
But, I unfortunately came down with Covid the Mon.-Tue. on the week of the conference, I had to cancel and for around a week I was in a super super rough place, I continued testing positive for three weeks.
This led to some burnout and I sat on doing anything in or with the book for a while.
As time went on, I was thinking about ‘how can I get even more realistic imagery depicting and portraying the symptoms of the disease’ and had the idea of asking people to let me photograph them attempting to portray a symptom like Excessive Daytime Sleepiness (as an example) but that felt like an unusual and also difficult task.
Thanks to my older Brother, who is very tech savy and has a brilliant mind, he both told me to and inspired me to attempt at using some of the AI image software to come up with images or to potentially tweak certain sketches.
As I dove into the AI image softwares, I was really impressed, there were two angles it led to:
a) I’d put in a phrase like ‘sleep, wake, instability in a person struggling’ or ‘faces of those experiencing a loss of muscle tone in their facial expression, Cataplexy’ or ‘battling sleep fragmentation through the night.’
b) I was able to in one of the AI software programs, upload an image for image revisions; this one I ended up using the most and was thrilled with what it was able to do, I uploaded many of the sketches I’d created (which some of were quite rough) and the software gave me 4 revisions of each sketch.
This was huge and I think it took the book to an entirely higher/better level.
The book felt really good once I’d put the sketches and images together, I decided to also include various paintings that I’d done over the years, such as the cover.
Spent a few hours creating a Cataplexy Words play image, which I decided would make a good back/rear cover page.
I still needed to find an editor who could take on the complexity of what I’d written, I was surprised when an old friend of mine who I’d met up with, told me that his Mother had been an editor for the local Art museum at the university.
I reached out to her and eventually we connected, I brought her the first revision with the AI revisions and imagery, she took on the project and I made her a painting of their 3 dogs.
We met over the past few months, 4 or 5 times.
First, basically we reorganized most all of the book, I rewrote the introduction, I moved a lot around, I added new pages and created a Table of Contents (which I’d not done).
Then we met again, after which was making grammatical edits throughout the book.
Then, there was a bit more reorganization, I had not put in page numbers so I figured out a way to do so; I have my own way of using the text/writing software that I use and I do not like battling it with stuff like the headers/footers/styles/anchoring/etc…
Her editing help was phenomenal and without it, the book would not be as solid, I am very grateful for her help.
She learned a lot about the disease, she’d ask me very good questions for clarity so that she could better grasp and then help me to present more clearly, what I was trying to get across.
Over the years (as mentioned earlier) I’ve been online on forums commenting on the subject, there are many phrases that are commonly used in the Narcolepsy community, along with my own having developed specific wording or methods of writing to try an pack (often times) multiple pieces into one.
That is partly why I think my 2nd book ‘Rolling A Path’ was likely difficult for some to manage reading.
In the end, or at this point, this book feels super strong and I’m extremely thankful for having been able to work with her, and her being able to work with me, to bring the book to where it is at!
Am optimistic there will be a good response out there to this book
And, even though the book is heavy, perhaps discomforting to some (the editor after her first reviewing of the entire book, said she was left with a heaviness, almost a claustriphobia though it was to do with how easily overlooked so much is, though how common these experiences out there are); the book is intended to portray the real gravity of living with the disease Narcolepsy, and/or other sleep disorders, there’s a broad spectrum and a lot of times such is not conveyed nor really presented, or is put out to be gentle.
Personally, I feel that I’ve accomplished what I set out to, awareness is needed and the gravity of the disease can be super heavy, people should be aware and recognition is critical for ever being able to make steps of progress.
Time will tell!
