THIS IS A QUESTION FOR FICTION WRITERS
I have been, since last November, in a position I had not been in in years, and which I neither like nor have coped with particularly well: not being able to write due to major illness and health problems.
Which is kind of ironic, since I’ve been out of commission as a scientist, my true and original career (though I planned to write in retirement, and DAMN! here I am at retirement age and technically retired from a job I was forced to abandon in 1989) for almost THIRTY years. A real shame after all those years in grad school battling to get a degree in a man’s field, Nuclear Engineering, and thirteen good years at major US science labs. But Life does things like that to you, and you roll with the punches, or don’t make it.
So, not to belabor the point, I’ve been out of commission for half a year almost; and now, due to the medications prescribed by my doctors, am facing the very real possibility that my brain will not come back to me, that the cognitive dysfunction which has been a result of the FIVE medications recommended for me to take (and which I’m fighting), and the still head-shaking INCREASE in exhaustion which I didn’t think could get worse.
Yes, I know we all get old and eventually die, and some don’t get to become old first, and there is dementia lurking on the horizon, but at my age, I felt I still had a number of usable years left – until now. Now, I hope I have years left, but I’m starting to get seriously worried about what has happened to my brain to make it even LESS usable.
Ten Early Warning Signs for losing your mind to dementia
This one particularly scares me because I store it years ago, AND I CAN’T REMEMBER – OR FIND VIA GOOGLE – WHERE I GOT IT.
The signs are the same in many places, so I am apologizing in advance to the person whose particular phrasing of them I’m going to show you (please let me know if you are that person, and what you want me to do):
- Memory loss for recent or new information – repeats self frequently
- Difficulty doing familiar, but difficult tasks – managing money, medications, driving
- Problems with word finding, mis-naming, or mis-understanding
- Getting confused about time or place – getting lost while driving, missing several appointments
- Worsening judgment – not thinking thing through like before
- Difficulty problem solving or reasoning
- Misplacing things – putting them in ‘odd places’
- Changes in mood or behavior
- Changes in typical personality
- Loss of initiation – withdraws from normal patterns of activities and interests
It doesn’t say in this list, or the one a an Alzheimer’s site, that the person’s AWARENESS of their own increasing problems is or isn’t a risk factor; my personal experience was the ability to hope that my people who had this problem were NOT scared and living in a hell of knowing their minds were going, when it was obvious to all of us – probably including THEM.
Since being put on cardiac drugs starting in February of this year, I have had EVERY SINGLE ONE OF THESE EARLY SIGNS HAPPEN TO ME. REPEATEDLY. Sometimes I’m very aware of it, and other times have had to have it pointed out to me that I was not thinking clearly.
I am aware of NOT being myself
It’s pretty obvious.
And when I haven’t been able to write fiction, the one thing I do which exercises my creative brain for a few hours on a good day (assuming all the incantations and spells have been laid, and the careful management of the physical body with rest, food, fasting, pain meds from before, and caffeine), and this started to go on and on and on, I’ve gotten pretty scared.
It’s subtle – NOT being yourself. It includes so many little things you can try to ignore, such as having literal trouble forming a word before you speak it…
So now, rather than bore you with my mental decline…
I would like to examine the title phenomenon: the one-book author.
Where is the place in the pantheon of writers for the person who chooses to or is forced to write but one book during their lifetime?
We have a bunch of famous ones, such as Margaret Mitchell and Anne Frank and Harper Lee (yes, in spite of the abomination of GSAW, which I refuse to blame her for).
In many of these cases, the process took a very long time. The reason for those is that the writer had to learn how to write, and if you have ever tried this little exercise, you know that the first thing you have to overcome is the sparkling story in your brain, compared with what you are able to set in permanent form when you try, especially the first time.
The authors may simply have not wished to do that process again. Or found more interesting and exciting things to do. Or ran up against the world and critics and the nether regions of fame, and decided strongly never to do that again.
Some of them were no longer with us when their one book was available for purchase. John Kennedy Toole (I believe he only has A Confederacy of Dunces out, with a Pulitzer in fiction to his memory) committed suicide; his mother stubbornly kept nagging editors until one published his novel.
How does this affect the READING PUBLIC?
That’s the part in curious about, and it may have changed in these days of self-publishing AND self-promoting.
Single novels written by indies MAY SINK WITHOUT A TRACE.
The continuation of the writing career, a pickup in merchandising, readers discovering the writer and reading their backlog – all of these things are necessary for all but the VERY LUCKY INDIE who catches the eye of someone in just the right position with just the right book.
Many of our successful overnight indie wonders are no more overnight than persistent: they have been writing – and publishing – longer than I have been writing, but fame just found them. A couple go viral each year: in one year it was Darcie Chan and The Mill River Recluse – which she sold 600k of at 0.99. I don’t know what she wrote before that (it was advertised as a debut novel); after that, she was picked up by a publisher, her prices were raised, and I don’t think the following two books did anything like the first in sales. I like her success (though would not want to be picked up by a traditional publisher without having the terms very carefully vetted); the books aren’t my style (they have, like WAY too many books nowadays, a REALLY NASTY SECRET in the past).
But aside from Chan, I haven’t seen a book sell two million copies like The Goldfinch, which was hyped and marketed by big pub (also, not a debut novel, IIRC).
There is a very good reason sometimes
When the first book is not as good as it could be.
Indies fictioneers don’t usually have the means to push that first book; reasonable indies expect their career to pay for itself, more or less, as they go. There’s no point to pushing a first one, if the writer can’t repeat the process in a reasonable period (write, publish, promote the hell out of).
And the most important reason is usually lack of knowledge. An indie, like myself, who spent 15 years writing a book, trying more to finish it properly than market before it’s finished, may have READ about marketing techniques, but has not MARKETED a real book yet, and there’s a huge conceptual and executional chasm between the cliffs.
So, what does that mean for indies like me?
If my career ended with To Be Continued at the end of Pride’s Children PURGATORY, because MY brain never returns capable of writing fiction, what happens to that book? What happens to the story, the ONLY one I want to write until it is finished.
I have been sitting at my desk for upwards of five hours daily since April 8 – with the result of a few notes.
The sad part: I had learned what parts of my ‘process’ could be sped up, and was actually doing quite well writing the second book, NETHERWORLD. Well started, completely planned, and in possession of a ratty old first draft and knowledge of my changed. My plan was to take less than a year to do the next book, another year for the third.
Want to make God laugh? Tell Him your plans.
I’m a good Christian, and a realist: God know exactly what will happen to me, what I will choose in the future, when I will go Home to Him. I can’t change an iota of all that.
Sometimes in the past two months and a half, I would have been perfectly happy for Him to say, “Okay, pack your bags – you’re coming home!” It has been that bad. Many times.
Not my choice, but a realist says, “Yes, Lord,” and brings very little in those bags.
That would leave me with nothing else published, and an unfinished story – which I’m assuming would do the proverbial sinking, sitting on the Kindles of the few people who discovered it since late 2015 for a while – and mostly abandoned.
It hasn’t done that well since it came out – I have a hard time with various of the components.
Price is one – few people want to pay $8.99 for an indie ebook of 167K tightly woven words, regardless of the fact that it’s cheaper than two 80K $4.99 books, or three 55K $2.99 books, and they can get an eARC for free by just asking.
Cover is another – if I had $10 for each ‘change your cover’ suggestion, I’d have a nice little advertising budget.
People who expected a Romance are cutting that it is too long or too slow.
And most readers (mine do better than average) simply don’t review OR tell their friends OR gift a book they like. Sometimes I wonder if they’re feeling guilty that they got pulled in to such a thing about a disabled woman.
And, of course, the ads – have NOT hit my stride there.
So what will happen to PC? PC 1-and-only?
If this is it for me, or my brain, which are roughly equal in importance for me.
But mostly because there would be no more.
I think the famous ones like GWTW had a lot of push in their day FIRST, and then it slowly became apparent the author was not going to write a sequel.
The reason for this post:
Suppose all of that were true: no more of the trilogy, no more books by me, no more writing to push what I already have to justify having spent my entire FREE time during the past 17 years doing nothing else.
Would I care? Yes.
Would I feel I should have spent my time otherwise?
NOT ON YOUR LIFE.
I hope it doesn’t sink like a stone, but I still have it available next to my bed in the nursing home for as long as I’m alive, whether I can read it or not.
And if God gives me life, and a brain to live it with, I will keep going forward.
Otherwise, I’ll try to remember to write out a quick outline of the rest of the story, as my daughter has advised, for anyone curious. They can post it on PridesChildren.com when I’m not here any more.
Assuming I have enough brain to write it.
I don’t know that you have dementia. Like some others have said, your body has been through a whole lot of late, which will naturally have an effect on your tightly controlled equilibrium (likely even more tightly controlled than the average person due to your experiences with CFS). It could take a long time indeed for things to reset. Maybe a year, maybe more. I’m really sorry you’re not feeling like yourself and are unable to write. I hope you will give yourself more time – lots of time, all the time it actually takes – and that most of all, you give into despair and give up. There are lots of people here rooting for you.
Thanks for your lovely support – and comments. You and the others here have given me that way to fight against the PTS: talk and write about what happened. My world is tiny, but not when expanded this way, and I am ever so grateful for that.
I am being forced to give this time to ‘heal.’ Much more than is necessary for most people who undergo this procedure. Most of them, side-effect free (or dropped out of taking the drugs without mentioning it to the doc) return quickly to their normal life.
The joke is that it was not the NECESSARY procedure that put me through all this, but the UNNECESSARY drugs – and the protocol which forced a sick person to deal with full doses of powerful chemicals.
I never objected to anti-platelet drugs after the stents, and even before. I tried very hard to stay on the Effient – it sent me to the ER. I tried hard to adjust to clopidogrel/Plavix.
I would have taken them the full year had they not given me impossible side effects. I know the risks are higher with the drug-eluting stents in that first month (and would assume it would take ME longer, just because). They are DESIGNED to work differently than the bare metal (BM) stents, and that requires the anti-platelets longer.
But they are still applying protocols designed for bare and first generation drug-eluting stents, when there has been plenty of time to propagate information that the newer ones have much lower risks over all, and specifically do just about as well with a month as with longer.
They have swept the other anti-platelet drug problem securely under the rug, away from the light of day: they cause increased bleeding, bleeding is worse the longer you take them, and they are especially problematic for older people. These are not trivial concerns.
And now I ‘know’ too much!
If it takes a year – as several people have kindly assured me I should give it – there will be fireworks of a different kind. I can’t take a year.
I am kind, and will continue to pray. Obviously I don’t know if you’re entering the dementia realm, but I don’t think you are. You’ve had A LOT of medical drama recently, and much of what you’re feeling and experiencing could be stress and drug side effects.
I sit over here sad that you cannot write at present, that you’re so ambitious and have no energy, but also while thinking, “But you wrote a book!” I mean, really, I wish I could finish one without any effort, of course, and YOU HAVE WRITTEN A BOOK
I’m saddened to read that you have felt so badly you’ve been ready to go home. That affected me.
I shall continue to wish you well.
Yes, I wrote a book – but I planned a trilogy, and the brain is in neutral – or worse, in reverse.
I’m not sure it’s happening to me yet; what I was pointing out is how easily drugs can mess with your mind, and make you appear confused, fragile, and as if you were having the same problems as someone who has dementia.
It is important, for example, to watch elderly relatives – because sometimes they get way over-medicated where they live, and if no one is watching, are allowed to just fade away. I’ve read so many stories of someone who noticed this, insisted mom or dad or Aunt Nellie be taken off most of the junk prescribed over the years by doctors who don’t bother to coordinate with each other or a pharmacist, and have the relative reappear out of the fog they were in.
And to make other people aware of the side effects MANY people get from common drugs which have been around so long they no longer have patent protection (Plavix), but still bring in over 1.5 BILLION euros to the developers EVERY YEAR.
Drugs are powerful – and should be taken for as short a time as they are proven effective. Older people can often dump a bunch of theirs, and should have doses reduced wherever possible – because their bodies can’t handle or don’t need the doses that were prescribed 10, 15 years ago.
Never too early for a warning.
I’ve never thought of myself as old; not yet, anyway, but I’m in the elderly category for drugs and side effects, worse because of chronic illness, and I was terrified to see how quickly and how completely they could remove my personality, and the bit of drive I have left. It took less than two months. The doctor didn’t care when I reported it, seemed more interested in me taking these things for a very long time than in how they were affecting me.
I need to be allowed back at my writing – or I release this frustration on the world. It isn’t pretty.
Fingers crossed for tomorrow – that will be the beginning of the sixth day without.
If you’ve already thought of this, carry on elsewhere 🙂 … can you dictate the story? Even just the outline as your daughter said? I read somewhere there’s an app where you can record on your phone, email/text it to a service that types up what you’ve said verbatim, and sends it back to you.
Unfortunately, no. I have nothing to dictate. I have Dragon, found it requires too much cleanup for right now – maybe in the future. Youngest daughter is in another state; and setting up anything requires a BRAIN. no brain. Zobies ate.
Either brain will come back, maybe for shorter periods, but daily, or I don’t know what I will do. I’m still hopeful. Too soon to suspect it’s not just the withdrawal. PRAY.
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Got a candle on the altar for you, m’dear. 🙂
I love prayers from other people – I think God listens to them more (to encourage us to pray for other people). Thank you.
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What Nita said!
My own two cents: When you sit down to write, if nothing is coming, write one line of dialog from one of your characters’ pov. Not about anything in the book, just about something around you. What would this one say about the view out the window? What would that one say about the weather? What would this other one say about the color of your rug? Just one line of dialog in a character’s voice. Keep a file of them. Just because. Just to keep in touch with them, and to know they love you, even while you’re resting.
Otherwise, what Nita said, all the way!
Boy am I going to be glued to the screen once my brain comes back, assuming it does.
Meanwhile, maybe I should veg out more, except I’m not even interested in TV, and can’t read.
Writer’s block can be broken by writing something – I don’t think this can. I can write something – I often do write a line or two, as you say – but it doesn’t stay there. The words are all covered with jello, and slip out of my hands.
I hear you. That’s why I suggested writing sentences of dialog that have nothing to do with the story. They don’t have to stay anywhere; they can just BE. That’s one of the reason I write my Hot Flashes. It only needs to be a line or two.
In my current state, I almost don’t think I should. There are some very dark things floating around because I’m so frustrated.
Best we forget all about it by getting my brain back.
I already have to watch what I write; I sometimes give it to the doctor to read (I gave her many journal days – they had BP measurements – and a copy of my PTSD post).
I’m very serious about this. Even my young assistant has commented on how not myself I am. If it’s not gone in another week, there are going to be lawsuits.
*hugs* It must be so frustrating!!! You’re probably right, that you need to be administering some gentle self care. Soaking in the tub with aromatic candles and good music?
Will settle for being clean – I havne’t soaked in a tub since childhood. I weeded a tiny bit with my assistant, and I’m filthy because I always use my hands. Self care consists in NOT doing things, because what you’re describing takes energy. So, an extra nap maybe.
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See what I mean?
Wow, Nita. You are my angel for today. And I sorely needed one. I’m going to reread THESE words, and save them.
It’s not the CFS dementia I fear so much – that one I’m used to, and the old me flashes through when the conditions are best. It’s the drug-induced one – sometimes those do more actual damage, and the person does not recover. I pray that it is one of the reversible sets of effects. As you know, we have little we can afford to lose – and I’m all tapped out.
So grateful for the encouragement – I don’t WANT to stop writing. I love it – and I haven’t finished, even with this one.
Because of this disease, I think it will take you longer than you may expect to recover from the stent surgery and the drug reactions. So, in that regard I do think you are recovering primarily from an ME/CFS crash. The reaction to the drugs has simply made it a longer recovery and because cognitive function was impacted more, it is scarier, which adds stress and prolongs the recovery. So, the two are intertwined. I suspect when you recover from the crash, your body will recover from the drug reaction and the dementia. That has been my experience in the past with serious back surgery and the drugs taken at that time. Everything was exacerbated for me including cognitive impairment. I came back after over a year of assiduous and mindful resting. The cognitive impairment lingered longer than the pain, exacerbated fatigue and other symptoms but it did finally return to my normal level of impairment.
A year? That was the problem I had with the back surgery in 2007 – that’s how long it took, and why I haven’t gone back for more (also, they botched it then – I will have to be far surer of a surgeon now).
I hoped, with the improved blood flow, that the impact of this would be minimum.
If they had NOT given me all those drugs, but only the ones I turned out to NEED, I probably would have been okay. But I warned them – and they tried all the other ones anyway. And I’m the one who paid.
If it takes a year, there won’t be much left of me. In three days it will have been 3 months, and I’m frantic. Rested, exercised (rehab VERY mildly), and frantic.
In two more weeks I should have no body memory of a drug it takes other people a week to get rid of; if I don’t have a brain by then, I will have to seriously reassess what I spend my time on. Right now, I still get up every day, sit at my computer, and TRY.
A year? You will peel me off some wall.
Mental and emotional stress is as huge a problem for us as is physical stress. To the body, stress is stress no matter where it originates. Everything is connected. I know you are aware of this. I know that sitting and staring at a typewriter, being frantic about the next book and wanting so desperately to write is very stress-filled. I’m not an author but I am an actor, costumer, and a director whose life was centered around the theater. I know what it means to wonder if I will ever be able to create again. I hesitate to equate our two situations, but I know the amount of mental stress I put myself through in trying to stay involved in theater way longer than my body could tolerate. I had already contracted to costume a show 9 months after my back surgery before the surgery happened. I was sure 9 months would be long enough to recover. After all one can create a whole new human being in 9 months. As the months passed, and I didn’t improve quickly, the mental stress of worrying about that show and trying to complete the costume designs (I remember staring at a blank pad with a face drawn on it trying to visualize the costume and coming up with no ideas) negatively impacted me physically and made the recovery from my surgery crash much longer. I had to back out of the production and theater altogether in order to recover. I had to focus ALL of my strength, time, and energy on healing and not theater. IF it takes a year, it takes a year. You can’t do anything to help the healing process except to rest physically, mentally, and emotionally. There are no drugs or doctors to help us. The only thing we know of that DOES help is …. complete and total rest. I can assure you, if it takes a year or three years there will still be something of yourself left. You’ll be okay. I’ve been there. Will you be changed? It’s likely that you will be. You will most certainly have a much deeper understanding of your own human frailty. The bonus is that will likely be good for your writing.
I hope so – and I’m sorry you lost that opportunity.
I dumped an incredible amount of stress after I made my decision – and found the perfect scientific paper to back it up. I was actually proud of myself for making my decision without the perfect paper; the decision was hard-fought, and the confirmation was gravy.
No one knows what triggers dementia, and whether it can be reversed or stopped at an early stage. I have the example of the wonderful Sir Terry Pratchett – and it scare me. Plus he got started early, and left us a bunch of books (my kids are big fans).
I got started very late, took forever, and now this. My mother and grandmother have had problems – I hope I got Daddy’s genes.
If it takes a year, I don’t think I will be able to bear it. THAT’S why the post. What happens if it does NOT come back?
I thought that one good thing could have come out of understanding CFS as intimately as I do. I expected to be able to make it one COMPLETE thing. It tantalizes – it’s sitting right in my mind, ready to go – like toothpaste with the cap on.
Oh, I’m quite sure the dementia is reversible. There is some scientific literature out there (wish I could remember where) that has found that for people with ME/CFS when healing occurs and we improve the brain and any mental difficulties associated snap back to wellness also. For those of us with ME/CFS who have had “hard crashes” that have taken years from which to recover, we have found it to be true. The dementia (brain fog, exacerbated word-finding, memory problems, etc.) are greatly improved, back to normal or near-normal after we have rested our way through the crash. It can, however, take YEARS and not just weeks or months. The body must recover first before the mind and spirit can do so. At least that has been my personal experience and the experience of others. I believe that is because it takes a tremendous amount of energy to heal the mind and emotions (spirit) and it is the body that produces the energy to make that happen. The body cannot do that until it is first fully recovered from the “crash”. …. Now, about Book #2. I hope it comes for I greatly enjoyed Purgatory. However, I’ve always suspected the greatest books, the ones we want to hold on to forever, come about because the author wrote the book for themselves and their own spirit. When that happens. we readers simply get to “listen in” when we read the book. I think you have done that. Will ‘Pride’s Children: Purgatory’ survive when God calls for you? You bet! When a good book is read, it becomes an integral part of the reader. It changes perspective, changes minds, changes lives. It lives on in every person who picked up that book and opened their eyes, and hearts, and mind, and spirit and read the words written on the page. We cannot guess how many people that will be or where the journey of the book will continue to take it. Especially one that is printed and bound and can last for years if not centuries, passed from one person to another, from relative to relative or used book store to used book store. You see, once written and published the story may never end. Even if only ONE PERSON buys the book and reads the story it can still eventually be shared by many in individuals homes, or shared in small book clubs, or re-published so even hundreds, or thousands down through the ages may read it. That is the secret magic of a book. YOUR book will be on my bookshelf when I die and it will be passed on. I KNOW it will be passed on because books are valued in my family and it will be sold, or given to charity, or read and kept on one of my children’s or grandchildren’s book shelves until it is again passed on to another reader.
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