Tag Archives: Hard choices

Quality independent literary writing must be nourished

Butterfly on cactus flower. Text: Beauty and quality are fragile. It takes effort to encourage them. Alicia Butcher EhrhardtWANT INDIE STORIES OF GREAT QUALITY TO READ?

Author Jay Lemming, who writes indie literary fiction (among many other things, including a good blog), has taken the lead in finding out how readers of well-written fiction – often categorized as literary fiction online – find their next book, and he’s created a survey for those readers.

Thank goodness for Jay, because this is exactly the kind of thing my energy doesn’t stretch to encompass.

Here’s the beginning of his latest post, making the survey available to readers:

Well, it’s finally here: the 2017 survey for readers of independently published literary fiction.

Click here to participate.

But before you do, you may want to read on for another moment…..

The market for independently published fiction has expanded for several genres: romance, sci-fi, fantasy, horror and all sub-genres therein.

But the market for independently published works of literary fiction has lagged due to the more conservative aspect of its readers…

CLICK HERE to go to Jay’s blog and read about the survey first – it will make great sense that way. Then please take the survey – there is a group of literary indie writers who will be able to use this information, results of which will not be restricted.

Jay will write about the results when the survey is complete; you should bookmark his blog or follow to get these results when they’re available.

Everyone complains that X% of indie work is cr*p – Jay is doing something about that, as are the writers who take the time and make the extra effort.

PLEASE NOTE: there is an amazing amount and variety of indie genre fiction

And plenty of quality work there to read as well – most people can find what they like, and the better writers in their favorite genres.

Literary has become the equivalent of ‘not-genre.’

However, this particular survey is for those who want what we have labeled as ‘literary’ on sites such as Amazon, because ‘mainstream,’ ‘commercial,’ and even ‘big book’ have disappeared as categories, leaving everything not specifically genre as ‘literary.’

The big publishers still have a stranglehold on some of this work – many of their authors (I know several) work very hard, but never see much remuneration except ‘prestige.’ Sometimes that’s because literary work is required for tenure or to maintain employment in an English, Literature, or Creative Writing program.

If indie literary work becomes popular, these authors will take the plunge into indie (as some have done already), and be able to pay for such frills as mortgages and college tuition for their kids.

And some of us, ahem, have started as indies/self-publishers, and have no intention of crawling off to submit our work to agents and traditional publishers big/medium/academic/small.

But if quality writing isn’t rewarded, readers won’t be able to find it.

Go help Jay. Take a few minutes and fill out his survey.


Support indie work in general – don’t forget the Wishing Shelf Awards and the lists of finalists. Children’s books by age groups first, followed by adult fiction and adult non-fiction (scroll down). Look for Pride’s Children – but there are not links to Amazon and other retailers on the Finalists list because it would be too unwieldy; PC is on Amazon here.


My continuing thanks to Stencil for making it easy to create graphics for these posts with a few mouse clicks.


 

Heart Sisters is an amazing blog

A hand writing. Text: Bookmark Hear Sister for when you need it. A blog for women on heart attacks, etc.SOMETIMES YOU JUST HAVE TO PASS ON INFORMATION

I have been reading post after post on Carolyn Thomas’s blog, Heart Sisters, and I want to pass on the information that it is FULL of stories about how heart attacks and other cardiac events are different in women – and how bad we are at paying attention to some of the symptoms, and getting ourselves safely (don’t drive yourself, don’t let someone drive you – call 911) to the ER.

All about women and heart disease from the unique perspective of CAROLYN THOMAS, a Mayo Clinic-trained women’s health advocate, heart attack survivor, blogger, speaker on the west coast of Canada

My suggestion? Go visit – and read a few posts.

Then BOOKMARK the blog for the future, for when you may need the information from a woman’s perspective that will make you do the right thing.

The link above goes to the archives. I wish I’d had this information before today – everything I’ve been reading and writing was in reaction to the distinctly male style of research papers.

Medicine could really use an overhaul of how it presents information to women; meanwhile, we have Carolyn.

Adult drugs mess with your mind

Noisy diagonal stripes with text: Before you say 'Yes to drugs ASK a lot of QUESTIONS, Alicia Butcher Ehrhardt

NAVEL-GAZING CAN SAVE LIFE OR SANITY

****CAUTION: NOT medical advice – I’m not that kind of doctor ****


Written a week ago (Feb. 26, 2017); I didn’t dare post until I knew how this ended

I thought it was just me, by now a neurotic, introverted person overwhelmed by being in a scary situation (chest pain) and a not-safe-feeling place (ambulances, doctor’s offices, hospitals, and ERs, where EVERYONE but you seems to be healthy, loud, bossy, and telling you what to do).

But as I try to recover my sanity and my health from the three stents + angioplasty, and all that implied/implies, I ALSO finally realized that I’m having a major DRUG REACTION to a blood pressure medication called metoprolol (like Toprol), a beta blocker; amlodipine (like Norvasc), a long-acting calcium channel blocker; and/or atorvastatin (like Lipitor).

I never had high BP before (except doctor-induced), and I’ve not been on any BP meds, and as soon as I hit the first ER they start pushing drugs on me. I resisted most of the drugs the first time (and they only had me for an ER day, and then a cath lab in PA day), so it wasn’t until the SECOND ER VISIT, again with chest pains, that they started pushing harder, and I just gave in and let them make me swallow and inject whatever they thought was necessary, whatever was their ‘protocol’ for everyone the same.

The adult drug: metoprolol – an iffy, volatile beta blocker (my opinion)

And that’s when the metoprolol came into my life. For days, I got it twice a day (25 mg. dose). I took it – I wasn’t in a position to argue.

When I left the hospital, they gave me my very own set of everything, which I dutifully took every day – BP med (metoprolol) and emergency BP med (amlodipine – for that BP spike), statin (don’t even get me started about those), and the two drugs I PROMISED, before they gave me the med-imbued stents, to take every day for a year: Effient (a platelet-control thingy like Plavix but better, which is supposed to keep the stents from clogging while they become part of you – epithelialized) plus a baby aspirin (81 mg.). The last two I promised to take; I won’t break that promise if I absolutely can keep it.

Saw the doctor the day after I got out of the hospital, reviewed meds with her (but not problems), reminded her that because of the CFS, and by long experience, I DON’T TOLERATE MOST DRUGS, even in small quantities, and can never take enough to get to an actual therapeutic dose of them. Decades of experience trying to take various things suggested for the CFS had proven I could rarely tolerate something.

For example, it took over three years, and every pain-killing drug in the book (except for the opioids and narcotics, which I wouldn’t take after I found out how much they messed with the little mind I have left – not even for pain). Eventually, we found one that worked most of the time, Celebrex – a cox-2 inhibitor – which is an arthritis drug, and which I’ve been taking, 200mg twice a day, for 15 years. Regular blood tests didn’t show any problems, and I prayed it wouldn’t be removed from the market (like Vioxx – which had problems).

I had explained that I would need to continue this drug for a weird pain which makes all muscle fibers, nerves, and joints burn simultaneously. I KNOW when I’m off it, I KNOW when I’ve gone to bed without a dose. I never need more, can’t manage to reduce what I take to less than 2/day.

She was listening, but I left with no drug changes, and started journaling every single day every single thing that happened to me (the experience kind of focuses your attention on yourself).

And wondered why I was still a zombie

The thing that keeps me sane is writing fiction. I gauge my days by whether I got a bit of the ‘good time’ which allows me to write the insanely complex and layered novel I’m working on.

I journaled every bit of brain activity, food, anything out of the ordinary – and ability to write fiction.

It took me four days to figure it out: late two nights ago, with the worm of certainty gnawing at my gut (along with whatever was making my gut do that wave thing continuously), I looked up the side effects of metroprolol, and some of the inevitable internet comments of those who have gone before (which one has to be very careful with, for obvious reasons).

And convinced myself (I’m not going to bias you by listing them) that the powerful drugs they had me on, the metoprolol plus the statin plus calcium channel blocker, was the cause of me being a zombie AND having the gut symptoms and all the rest.

My solution: don’t take that crap

All I wanted to do, which I could NOT do – I completely lost the ability I’ve had for YEARS to meditate, rest, nap, and calm my heat beat – was get back to the place where I was in charge of my blood pressure and heart rate again.

The first, necessary part had been accomplished: get the hell out of the hospital. I’m trying to NOT be ungrateful for them saving my life and avoiding a heart attack sometime in the future, and chest pains now. Understand that. But getting out of the hospital, and back to a quiet, self-controlled place was not doing what I had expected it to do.

With the new stents, I figured I’d be in the best possible condition for someone like me – able to slowly start my little bits of bed exercise again, lose weight, and start the walking with a heart monitor which I had been unable to build up (probably because of the restricted blood flow making my heart rate go up above the aerobic limit too quickly, even before the chest pain – but I’ll never know that for sure).

So I was optimistic – and I was making NO progress in spite of that.

You might say – and I did – that I was being premature, that I should rest more, that I shouldn’t expect to write fiction for at least a couple of weeks.

Which would have been fine, except that the symptoms I’d been trying to ignore were getting worse, not going away. Sigh.

From my journal:

I made the decision around 4AM that I’m not taking anything but the Effient and the baby aspirin, because I literally promised I would take those for a year.

My gut hurts. Waves of intestinal rolling literally make me feel sick.
My left hip hurts.
I’m queasy – and have been for weeks now.

The beta blocker and statin are NOT required.
I never agreed to a blood pressure medication, because we ALL agreed I don’t have high blood pressure.

I understand keeping my BP down (illegitimi non carborundum) – but I can’t even calm myself down with my breathing right now. If it rises, we’ll talk about that then.

I understand they are more comfortable with a certain LDL target – I am committed to losing some of this weight, but have the feeling I should not be having this much trouble.

My HEAD is soggy and useless, and I can’t live that way. I can’t write that way.

And right now the pain in my universal joint is pretty bad – and I don’t dare take the appropriate painkillers.

Even [hubby] takes ibuprofen when he needs it! But he’s not on Celebrex.

Can’t do this. Won’t do this to myself.
I tried.

The actual decision was to not take the daily dose of metoprolol+statin with breakfast.

Talk about trepidation!

And the results were weird. My head cleared for the first time in as long as I can remember.

The gut was still doing the wave – I shrugged: it wasn’t getting worse. And gut muscles and heart muscles are both smooth muscles – the drug affecting both made sense, and might take some time to wear off completely.

I finally got the timeline of events clear in my head. I know I blogged about it already, but there are significant mind warps with what I wrote (though the two segments, ER to PA and catheterizations are correct, there was actually a SIX DAY GAP between them when I was at home, dealing with chest pain I had been told was not cardiac, before I went to my own doctor to get some help with that…and the second ER to PA and catheterizations started).

Huh. I completely lost six days out of my life.

Yeah, stress. But more yeah, drugs cause memory problems – and confusion.

The day went along, the best day in ages

I almost wrote (I had to get back up to speed). I remembered why I loved this particular scene (22.1 if anyone is keeping track – first scene of second chapter in NETHERWORLD).

I got all enthused. I blocked the internet for 5 hours, and didn’t even mind not surfing – I don’t waste my good time on surfing.

I took my naps – and could do my meditation breathing and calming and even sleeping, just as ‘normal’ from before on a good day. It was still there; the drugs had blocked my abilities.

I had obviously made the right decision.

Hey, I’d only been on the stuff for a couple of weeks, it was supposedly a small dose (50 mg), and it shouldn’t be too hard to cut it out completely, and then discuss the thing later with the doctor (it’s a Saturday, and I’m sure I won’t be able to get through to her then).

I don’t want to be diverted – so I don’t even tell my husband (not such a hot idea in retrospect, but, hey, I’m fine, BP (I measure several times) is rock steady – and I’m feeling HUMAN for the first time in so long.

All I needed was to stop taking the drug which was causing the problem! Problem solved.

You see where this is going, right?

Husband has picked up a cold (I’m sure it’s all that stress of holding it together and driving to PA twice a day for me in the hospital), and is miserable, and I don’t want to bother him.

I am having absolutely no problems. He heads to bed at ten, early for us, and I stay up to surf a bit, feed the chinchilla, and put the house to bed for the night. With a still-working brain.

And the blood pressure spike HITS.

The short version (as if anything I ever write is short):

I take the emergency BP med (amlodipine).

Ten minutes later, and having argued with myself the whole time, I cut one of the metoprolol tablets in half (it’s late in the day), tell myself I should have titrated down more slowly anyway; remember someone on the internet saying that you COULD split these, even though the are extended release (tablet, not capsule – makes sense – or maybe I saw that on one of the side effects pages online); and swallow the damned thing.

And spent the next two hours taking my blood pressure every ten-fifteen minutes, journaling all this stuff, and wondering:

  • should I call paramedics and go to the ER again. For a drug adjustment? They don’t do that kind of stuff, and besides, I have neither had chest pain, nor gotten to the place where I even though of trying the nitroglycerin. I wasn’t stupid enough to even consider driving MYSELF to the ER (five minutes away).
  • should I wake the husband who is sick, who I didn’t tell about my little experiment, and who won’t have any particular ideas except to take me to the ER – why would he have any ideas on how to manage this little crisis?
  • should I take a SECOND amlodipine emergency blood pressure tablet? No one ever mentioned what to do if the first didn’t work! I have no data. Even the internet is silent on the topic.
  • was I feeling anything alarming – other than BP and pounding heart rate – and didn’t people live for years not even knowing they HAD elevated blood pressure?
  • would a short period of this damage my kidneys?

I KNEW calling someone (the Aetna 24 hour nurse, or the cardiologist’s on call person if they had one) would put me in the ER overnight for ‘observation.’ I KNEW that, the same way I know my own name (and birthdate, which I’m going to change, since they used it for ID about a million times in the hospital, and I’m tired of it).

So, what did you DO, Alicia Guadalupe?

Nothing.

But watched myself like a hawk, and wrote it all down for posterity. To go with the autopsy.

When the BP spike was more or less over, around midnight, two hours later, I added it to the list of dodged bullets, was mad that I still had metoprolol in my body – had that really been necessary? – and went to bed next to sleeping husband (who had now at least had a couple of hours of sleep and of course woke up).

I told him the whole stupid story.

He said I should have woken him. I told him why I hadn’t.

He was calm, calmer than I would have been.

We chatted for a while, and he reminded me (I had forgotten – it was 18 years ago) that he had had problems with the SAME drug, metoprolol, after HIS quadruple bypass, which had landed him in the hospital within a week of coming home.

We were awake for a while. The gut is still doing the wave – I’m ignoring it. And actually managed, both of us, to get to sleep before 2 AM and make it through to around 8 AM with only minimum breaks in sleep.

What do I do now?

Play by ear again.

Don’t take anything unless I feel I have to, and then try a one-QUARTER dose of the nasty drug later today if something happens again. And the emergency stuff.

I feel fine. I feel normal. I blogged – that’s something.

Yeah, yeah, I know. Call the doctor’s office. I would, if I could figure out how to phrase the statement of what I want:

Could you please tell me how to get off metoprolol properly?

I’ve done the following… – how do I finish the process?

I’ll call during the week, but is there anything I need to do meanwhile?

I’ve done something possibly stupid, but am okay – what should I expect next?

You see my dilemma, right? They HAVE to respond to ANY question like that with either ‘GO TO THE ER’ or ‘TAKE THE FULL DOSE NOW AND WE’LL DISCUSS IT AT THE OFFICE.’

THEY have no choice. THEY have protocols they must follow or be accused of malpractice.

These are, however, the same THEY who took three catheterizations and a lot of luck, for whatever reasons, to find the thing that actually needed stenting, and have put me through hell (and saved my life – I’m grateful).

THEY put ME into the situation by giving me drugs I never agreed to long-term, in the hospital, and then NOT discussing any of them with me in the after-hospital visit.

No warnings. No ‘Call if this happens.’ No ‘You can take X for pain.’ Nothing beyond ‘If you have chest pains, go to the ER.’

But I’M at least half-way off the stuff, half-way to freedom.

It was a reasonable thing to try (I tell myself). And write it all down in case it is ‘for posterity.’

I’m thinking about it.

I took a shower. I hadn’t had one except the crappy one when I left the hospital five days ago. I figured out how to take one sitting – very low stress – and my hair is now clean, my toenails now trimmed, for the first time in WEEKS.

I’m not worried – but then I wasn’t worried yesterday when I had my first good day, either. (Fool’s comfort.)

My MIND IS CLEAR. Do you have any idea how valuable that is and how horrible it’s been without my tiny bit of brain? Day after day after day?

I have and have had NO CHEST PAIN. The gut might even be slowing down.

Husband is home, seemed surprised when I asked him if it was because of me. No, he said – he didn’t take his cold to church to share with the congregation. Love that man.

I also tell myself that anxiety probably pushed a huge load of adrenaline, the adrenaline I don’t allow myself because my body take days to clear it, into my system, so I probably made it worse than it was. Hindsight allows you to do that.

And there you have it.

If you lived through this little misadventure with me, you have now probably decided what you might do in a similar circumstance – and thus may have learned something.

Most of ‘you’ do not have CFS, and cannot imagine the difference between being a zombie 24/7 for WEEKS, and having a few clear hours, that makes my life bearable. You probably think I’m a total idiot. You would have called. Someone. Anyone.

If you HAVE CFS or a similar chronic invisible illness, this may be more your life as usual than you really care to think about. The drug overreactions, the fear, the lack of understanding among ALL medical personnel, even the ones who seem to understand and agree you’re delicate. You might have done the same, or not, but the thought processes might be similar.

Or you might think: What’s the big deal? She had a BP spike. They happen.

Feel free to weigh in. Politely. I’ll listen, even if I don’t change my mind. I can still take that dose of poison: full, half like last night, quarter. It’s noon, and I really should eat something.


The upshot? A week later I am ready to share the adventure (Mar. 6)

I ignored the third spike, smaller, Sunday night (Feb. 26) – and BP came down on its own, no emergency drugs.

Monday morning (Feb. 27) I called the doctor’s office, told them I’m off their drugs and won’t take them. Told them I am trying very hard not to have to get off the one they really want me to take, the Effient to keep the stents open.

I asked if I could switch cardiac rehab somewhere else more convenient (they really want me to try that).

And I asked how long it would take the huge bruise and tissue damage area to resolve.

They tell me I can switch the rehab to a closer location; ask me to consider taking a different drug after these are out of my system (Zetia, a cholesterol lowering drug); and send me for an ultrasound of the damaged area.

The internet supplied the lovely information that it can take six days for a normal person to clear the drugs I’ve been taking and their lovely side effects; I’m giving it far longer, as CFS people don’t clear things as fast as ‘normal’ people.

It’s far better now (Mar. 6) SEVEN days after the last day with a half dose. The symptoms are subsiding. The head is even clear for periods of time – and I wrote yesterday for a while.

The BP runs 120-130/60-80 just fine with no help. The spikes stopped. The gut is calming down. Every symptom is dropping slowly toward what I’m used to. (There were some interesting sensory hallucinations – I won’t miss those.)

I’m ‘authorized’ to use ibuprofen ‘lightly’ – which helps with the new back pain.

And the ultrasound shows damage, but not to the artery – I haven’t been told how long it will take to heal. The bruise is spectacular, belly-button to mid-thigh on the right, and leaking down like a Dalí painting of a clock on a hot day.

Medical research and you – reading the literature

And I have spent a very ‘interesting’ week reading a ton of research papers on all this stuff.

The more I read, the more I am convinced I will probably not take these drugs – and that prudence would have advised not even starting them, or getting off of them the minute I was out of the hospital. I shouldn’t have had to find that out on my own. Even if they do what they say, my body can’t handle them, so it won’t matter if they do what they say.

I won’t summarize what I found out, but it wasn’t pretty. There is a LOT of it. It gave me a lot of ammunition IF I can keep my BP in a good range as I have been doing for years with meditation, de-stressing, and biofeedback of a sort.

The statins will most likely not be something I can tolerate – I’m guessing the liver enzymes would have shown this in six weeks anyway, but I’d rather avoid the damage.

My conclusion: I am now a ‘cardiac patient,’ which I wasn’t a month ago

That does NOT mean I lose all choices.

I am grateful the blockages have been stented, hope they got them all, still wondering what really went on, and why it took over two weeks to find them all. Hope it lasts, and I don’t need more. Hope it was a quirk of anatomy.

Am pretty sure the relative immobility of a chronically-ill person didn’t help any.

I expect to be monitored, and there will probably be more tests.

But the drug-induced hell wasn’t really necessary: I told them about me, they didn’t listen, I paid. And I learned. ASK A LOT OF QUESTIONS, and if you have time, go to the primary sources.

Chest pain from striated versus smooth muscles

self-diagnosis

DEALING WITH PERSISTENT PAIN EXPECTED TO BE TEMPORARY

*** NOT medical advice. I’m not that kind of doctor. ***

Having abandoned the hospital last Tuesday with a relatively clean cardiac bill of health, and after the cardiologist visit on Wednesday, I noticed the pain hadn’t stopped. Not discomfort; PAIN.

(By the way, the cardiologists lose all interest in you at that point.)

It was a bit smaller due to relief – but that was all.

On Thursday, sensing it would finally work, I made the effort to voluntarily NOT cough when my body wanted to. That’s a trip, by the way: you have to catch it and distract it.

But it wasn’t enough. I was still setting off the kick-in-the-chest-by-a-mule feeling when I would do such small physical tasks as walk to the bathroom, go down 7 steps to the living room, and, the worst, coming UP those 7 steps and having to walk down the hall and across my tiny office to my desk chair, where I would sit, and grit my teeth until the pain started subsiding.

If I had not already done that, I probably would have made that hospital ER trip.

Why didn’t you go to yet another (or one of the same) doctor, Alicia?

Because I decided, if I knew I probably wasn’t going to die yet, that the whole experience had completely wiped out any chance I had of getting better without some serious rest time.

Internet lookup of possible sources of chest pain

Surprisingly not, it was hard to find the information online about non-cardiac causes. Because of course you push ‘get checked out by your doctor’ and ‘go to the ER’ as solutions, if you don’t want to have your patients’ families sue you.

Have you noticed how all sites that start with ‘Non-surgical ways to…’ quickly end up with dismissing those ways and heading for, ‘If you have to have surgery…’?

In the end I found NOT ONE SITE stating that coughing could CAUSE pain elsewhere that wouldn’t necessarily go away by itself.

And none of the sites talked about HOW long-term coughing might trigger TEMPORARY chest pain – I ended up deciding that one strictly on my own. Since it happened to me, I’ve decided it IS possible to cough so much that your chest gets supersensitive, and any little thing can then set it off.

Ibuprofen, which I now allowed myself, helped a bit – but not for long – and didn’t remove the crushing/tense feeling that minor exertion set off.

Some of the sites that talked about non-cardiac chest pain had a list of other serious things that it could be (with the ‘temporary’ part not discussed).

  • Some of them were pulmonary – things like pleurisy or pneumonia.
  • A bunch were gastrointestinal – having to do with spasms of just about anything from one digestive end of you to the other.
  • A very small number were musculoskeletal (specifically talking about the intercostal – between-ribs – muscles that help you get air in and out), and mostly seemed limited to sharp pains that might have been brought on by sudden muscular exertion.
  • And no one mentioned the specific area that seemed to be aching, the outer chest wall pectoral muscles.

Using the old noggin – a dangerous thing with mine

Assuming I’m not dying from something else wasn’t hard: I convinced myself the mule-kicks were induced by coughing, and would eventually go away if not continuously triggered.

So I decided to see if I could fix the phantom mule with things on hand in a regular household like ours, and figure out what it was. I also promised the husband I’d see my doctor again if the pain persisted despite my best efforts.

I decided, from the region affected, that the three candidates were:

  1. esophageal spasms
  2. pectoral muscle spasms
  3. intercostal muscle spasms

Tools on hand:

Last summer, I pulled my usual ‘I don’t want to go to the doctor’ routine when I’d had a bout of waxing and waning spasms of the GI tract, until, 8 days in, and 4 later than I would have taken anyone else, I went to Urgent Care and complained. I’d never had that intensity of pain before, and I was hoping it would go away before I had to have my insides subject to scoping – which would involve doctor visits, labs, tests, all things which are 1) exhausting, and 2) suck up my so-limited writing time because I have to leave the house.

When I finally went to UC, the doctor prescribed an anti-spasmodic called dicyclomine, and within a day or two my innards had stopped punishing me for eating, and drinking water. Much better. I stored the remainder, thinking it was a nifty thing to have with you on a vacation just in case.

Also, from a previous doctor I had Skelaxin, a muscle relaxant – said doctor saying I could take up to three a day. I had found that I could barely tolerate 1/3 of a pill, very occasionally, and it would knock me out. I’m a bit sensitive to medicines, which is why I try not to take them! But I have a couple of bottles of the stuff left, which will probably last until I’m in a nursing home, non compos mentis.

Plus over the counter cough suppressant, and the nice cough syrup with codeine which is the only thing that really suppresses a cough – and wipes me out.

What to use – and why?

I figured out the important thing depended on a fact I learned in Anatomy in 1968: that we have two kinds of muscle fibers:

  • striated muscles – heart, skeletal muscles, with the heart muscles being INVOLUNTARY
  • smooth muscles – lining your gastrointestinal tract (also blood vessels?)

The difference is that the striated ones can be affected by a muscle relaxant, and the smooth ones need the anti-spasmodic anticholinergic meds.

Using the muscle relaxant had helped a bit with Mr. Mule, but once I found the dicyclomine, and took some, I’m finding that the same medicine which the UC doc prescribed for acute abdominal cramps seems to be helping with spasms in the chest region. Same system: GI.

Conclusions

Which brings me to the conclusion that the pain probably comes from an esophageal spasm – a scary thing to consider if it were persisting or getting worse – but taking a few doses of the anti-spasmodic dicyclomine seems to be bringing the severity and duration of the pain attacks down to bearable.

Where we will keep them until they stop happening.

7 steps now trigger a much smaller animal kick; a jackrabbit, maybe.

I’m still having to control coughing attempts voluntarily, but I can do that, and the severity of that is also going down, so a week after this stuff sent me on an ambulance adventure, I am in a state of less pain, I plan to continue to avoid the doctors, and maybe I can get enough rest to get back to not leaving the house so I can write.

I’m so glad I took anatomy.

I’m not a medical doctor, so don’t do what I do.

But if you do, tell me what you figured out about your body.

Chest pain is not always heart-related

chest-pain

BUT CARDIAC CAUSES MUST BE RULED OUT FIRST –  THEY CAN BE FATAL

Your brain, the precious thing that makes you, YOU, cannot function without oxygen for more than a tiny number of minutes. After which, if it doesn’t get that oxygen, you are no longer YOU, even if you survive.

Get that through your head.

Before you read what follows. And remember it.

The Perfect Storm

I’ve hesitated to write this post all week because ‘The Perfect Storm’ is never apparent except in hindsight. And I’ve been feeling like crap.

As a result of the CFS I live with, you can consider me immuno-compromised all the time. Sometimes it helps to have my immune system cranked up all the time – I fight off many things with a shorter period of malaise than many people. But when it gets overwhelmed, it REALLY gets overwhelmed.

I had been coughing, as a result of first one virus, and then, probably another (probably caught from husband who thought he had caught it from me – and didn’t take precautions – and probably gave already-weakened me the horrible virus he picked up somewhere else), since around Nov. 1, 2016. Sometimes very violent coughing. Painful coughing. But not chest pain. Remember that. Not chest pain.

And yes, I had seen at least four doctors (including mine twice), had a chest X-ray, antibiotics, steroids, and an inhaler of albuterol. My lungs had been listened to carefully, and pronounced good, then diagnosed as bronchitis, then diagnosed as ‘tight’ (whatever that means).

I had the feeling that if I could just STOP COUGHING for a while, everything could get better. I really hope so – I’ve now managed to not cough for two days.

More scary symptoms added – caused by cough? Or revealed by cough?

Older white female, heavy, sick a long time, not very mobile, is not a good place to start anything from.

This is where things get a bit fuzzy. I don’t know when the extra shortness of breath started – because I didn’t record it. I just took my time climbing up the 33 steps from the crypt of the Princeton U. Chapel where I sing on Sundays with a tiny Catholic choir. Was it just the CFS lack of energy? Or was it something new? And was it a result of the coughing, or something made worse by the coughing? I honestly don’t know.

But shortness of breath is a symptom that shouldn’t be ignored if it gets worse. Nor should the tightness in the chest that went with it. If you wonder how I managed singing with the cough going on, it wasn’t continuous, I took over-the-counter meds to control it (paying for their help with the extra fuzziness that hits my brain as my body clears out the meds), and I really like to sing, and there was, accidentally, a long hiatus between the last time we sang in December (the 17th) and the first time I made it in February (the 5th). Vacation, the choir director canceling because he thought there wouldn’t be many people there, and a couple times I was too sick to go and didn’t want to cough on my choirmates. So, a big gap – during which I coughed a lot.

So I sang last Sunday. And noticed things were not good in the pain department, so I took the steps extra slowly.

And then, that night, the first trigger?

Triggers for chest pain

Are not always obvious. In retrospect only, the chest pain flare – significant and scary – Sunday evening was set off by me having a chocolate protein shake. Silly, right? I had had eggs for breakfast, so I decided to have my usual shake at night. I make it with lots of ice, and it’s very close to a milkshake (okay, for someone who doesn’t eat carbs if possible), cold and frosty and tasty.

And sometime shortly after I finished it, a wave of chest pain that stopped me short, raised my blood pressure, and scared the heck out of me – but slowly resolved, leaving me shaking and wondering whether I should be doing something. But you know what Sunday night after the Superbowl must be like at the ER, and if you’re not absolutely sure you should be going to the ER – after all, the pain resolved, right? – you pretend it wasn’t so bad and go to bed. Just to be sure, I took my blood pressure, which was high but came down slowly to almost normal.

That’s the place at which many fatalities happen, and yes, I’m perfectly aware of that.

The next morning I called the cardiologist’s office, and moved my appointment from Feb. 23rd to last Wednesday because they had an opening. The cardiologist was my primary’s idea BECAUSE SHE THOUGHT SHE HEARD A MURMUR – almost a year ago – and I had finally gone to see her, had had the recommended echocardiogram and ultrasound of the carotids, and had that appointment on the 23rd to get the results (which turned out not to be significant, or they would have made me come in). I was being reasonable.

The cardiologist’s nurse whom I was talking to – and had told about the spasms which resolved – concluded with, “If you have any significant symptoms, head to the ER.”

I hung up after those words.

On the cusp here.

Except that, while I was talking to her, I was having my morning protein shake – same as usual, full of ice, I was still coughing, and I drank it at normal speed, not really paying attention.

And in all this remember that I’m operating at much reduced brain speed – because of that infernal and exhausting coughing that just won’t go away completely. I haven’t, at this point, written fiction in weeks – because that requires that all the indicators align perfectly, and I haven’t had that in weeks. We CFS types call it brain fog.

And then it happened: decision time

An unbelievable wave of pain hits me in the chest.

Husband frantically puts on clothes, intending to drive me to the local hospital (in retrospect, I should have let him – they did nothing IN the ambulance), but I lie down on the living room floor when faced with the prospect of walking all the way out to the car, and make him call 911.

I’m coherent enough to walk him through FINDING a non-enteric-coated full size aspirin tablet (he had brough me four of the baby coated ones, and I though they might take too long to dissolve), as the dispatcher said to take. The people who make it first are the firemen – I guess they had nothing to do. They can’t do anything, and they don’t transport, but there they were. To be with us (I suppose they have CPR training) until the EMTs get there. To help me down the seven steps to the front hall (at which point they let me walk myself to the downstairs bathroom just fine – should have taken that as a sign).

The EMTs get there, transport to hospital – without doing a thing IN the ambulance except, as we practically pulled up to the hospital, rolling out the oxygen tubing you see on TV going into the nostrils – which was then on my head for less than 3 minutes. Revenue enhancement? The things you think about!

The chest hurts a lot, but it is, like Sunday night, slowly resolving. The BP has been high, but is coming down. I am trying hard to calm my breathing and heart beat.

At this point you are as committed as if you jumped out of a plane

NOBODY in this whole system can send you home now (and you’re still terrified anyway – chest pain really hurts).

Every bit of exertion IN the hospital sets off the waves to some extent. I duly report this.

I won’t bore you with the rest of the day, the admission to the hospital, the doctor from the cardiologist’s other office who tells me my symptoms are indicative of 90-95% blockage somewhere. And scares the hell out of me. And orders drugs which I later, when they are offered in the hospital that night, I decide can’t possibly help in one day, and I refuse to take drugs without discussing them thoroughly with MY cardiologist and bringing up the whole CFS thing (this was the statin; I think I took the aspirin).

By the way, if it had been cardiac, taking the statin right away is important (said MY cardiologist, but I still don’t see how – she said it prevents even more damage to the heart – must look that up).

And the train wreck continues (as well as the pain, enhanced by fear)

You can probably see where this is headed, but, after a totally miserable night on a hospital bed after being in an even worse, if possible, ER bed all day, with all other indignities not being related here, they haul me off by ambulance the next morning to the cath lab at St. Mary’s in another state (PA), and finally, after a circus of paperwork and other activity, actually go in and LOOK at the state of my arteries, etc., with the view to saving my life by stenting those presumed 95% blockages.

Only to find nothing major (though there are the beginnings of plaque they don’t like), and SEND ME HOME. No stents. No hospital stay. NO prescriptions.

With no one caring about the, you know, actual CHEST PAIN.

Which is the same theme when we see the cardiologist the next day, who now wants to treat me as if I’d come in for cardiac reasons (instead of the benign Level 1 heart murmur which tests show is accompanied by minor calcification) – and start me on meds: no, nothing important wrong, but you really should start taking these heavy-duty drugs which are known to cause significant muscle pain, especially in the CFS population, and memory problems in many (c’mon now – I have TWO brain cells left, and can’t afford to lose them).

No, the drugs don’t lower cholesterol.

No, the drugs don’t REVERSE plaque buildup. Nothing, apparently, nothing chemical can do that.

No discussion of alternate methods of lowering cholesterol (like diet, my only real option as exercise isn’t possible – can’t go aerobic because the body can’t produce energy aerobically).

The end? The summary? The conclusions?

  1. If your chest hurts enough, or worries you enough, you HAVE TO GO TO THE ER. Period. You don’t belong at your doctor’s office, or even at urgent care – they don’t have the facilities should it be, you know, a heart attack. Only a hospital does. I did everything right. At the ER they take blood three times, 8 hours apart or so, and they look for certain cardiac enzymes to be present, to indicate you may have had a heart attack. But this takes a while. Meanwhile, they treat you as if. They have to.
  2. It may NOT be cardiac. Some 23% of chest pain is NOT cardiac OR pulmonary. It might be esophageal spasms, or intercostal muscle spasms (the intercostal muscles between your ribs pull air in and push it out, and they were already in revolt from the coughing. Probably). The pulmonary pain can be separated out a bit, but may not keep you from a full cario workup. I don’t know about that one. The pain/spasms could be chronic or acute, or getting there – you won’t know until analyzing all the evidence later.
  3. I ended up getting a heart catheterization, the gold standard for actually LOOKING, which might have taken a lot longer otherwise – but might also have never been done, especially if the pain resolved soon enough AFTER THE COUGHING stopped. So I have the baseline I, as a PWC (person with CFS) would not be able to get with a treadmill stress test (testing to exhaustion has horrible effects on PWCs; I won’t do it) or chemical stress test (same effects on PWCs; won’t do that either). But it didn’t have to be the whole ambulance/ER/cath lab emergency experience. IF the chest pain hadn’t stopped, I would probably have had the test eventually.
  4. If the doctor you see in the ER gives you meds he says you should take, take them. I did with the ER doc’s meds (I think). It was later, in the hospital bed alone all night (they slap a heart monitor on you and then only come if you call) when I decided not to take the meds the over-zealous cardiologist ordered. 50/50 on that one.
  5. It is possible (maybe) to stop your own coughing – IF it’s on the way out anyway, and you take it very easy, and use the OTC meds (and the cough syrup with codeine I was prescribed at one point in those 3+ months), but it’s a full-time job, and I may only have been fooling myself. By my husband’s symptoms – he who gave me the second virus – I had expected to be done with the coughing by this Wednesday. It happened/I forced it to stop on Thursday by fighting back with every cough attempt. Maybe my yoga breathing helped a bit. I couldn’t do it before, so maybe that’s also completely bogus.
  6. Don’t get sick. And even if you think someone else’s illness is the same as you have, it is STILL possible to hand it back and forth – so keep up with the precautions, don’t get near other sick people, wash your hands a lot… Everything spouse didn’t do.
  7. Try not to have overlapping illnesses. It messes up the diagnoses.
  8. Don’t be stupid – this was a royal pain, a huge expense, and a possibly wasted effort – and it was still the right thing to do.
  9. You may feel like an idiot when it turns out your heart is fine. I did. But you shouldn’t. They really can’t tell, and you really need to know, and you can’t take that chance. And you are the only one who can decide: What’s happening isn’t right, for me. Unless, of course, you’re passed out on the floor and trusting someone else will make the right call.
  10. I am SO glad it is over (or getting there).

Share your own happy experiences in the comments. I’ll listen. Might learn something.

Write memories down or risk losing them

Autumn tree and bush. Text: What's on your trip down memory lane? Alicia Butcher EhrhardtTIME PASSES SO FAST – AND YOU CAN’T GO BACK TO TAKE PICTURES

This was in my potential blog posts, dated March 23, 2016 at 1:10 PM – and I had forgotten most of it:

“While I was napping, I was overcome with memories – memories which I am terrified of losing from my head, memories I haven’t shared or saved or written down, memories that will come from the detritus of making ourselves small to move to a CCRC*, and which I have no time to save right now.

“Memories which might be read to me in the nursing home so they would spark real memories.

“It is a huge project, even writing down what I do remember, and asking those people who still remember some of the pieces to tell me those pieces.

“The present could take so much time in locking down those memories, time I won’t have while I can still DO some things, still create a few more.

“Today I went out for daffodils, brought some in, and wonder if I took energy I don’t have – or released some restlessness that needed a place.

“And here I am writing – that takes more time.

“MY memories. For me. For our kids. But mostly for me, though I want to give them theirs – and Gary is NOT getting back to me with the digitized videotapes**.

“And I don’t have time this week anyway.

“One more thing for the To Do list.

“I could at least start, ‘An annotated Life,’ as a Scrivener project. DONE”

What you don’t write down may disappear

*A CCRC is a Continuing Care Retirement Community – and we’re planning to move to one as soon as our last chick is settled. I need the pool and gym facilities, and we need to be free of the not-fun-anymore chores of taking care of a house and yard and having to drive around for the doctor appointments.

They are not for everyone – and they are sort of permanent, so we will choose carefully.

My main concern will be quiet, and congenial people to do things with. After this last election cycle, we will be VERY careful in picking the state as well as the people.

There is something like a 50% chance of developing dementia if you live to 85, which is a sobering thought for a couple.

I’ve seen amazing things done for people with memory problems, which include photos, music, and other memory triggers. But you have to pick a place which will do that.

Before they get any older

**Even though it was a lot of work, and I was always exhausted, I took the darned camcorder everywhere, forced people to smile for the camera or the recorder.

But I never had energy for the next part: moving those precious memories to newer storage methods, making copies, annotating the contents beyond the label on the spine of the tape cassette.

By the time I really started panicking, 30 years had passed, and I had at least 18 tapes in everything from Beta to Super Hi8 (no digital!). Through Thumbtack, after posting a project, I found a person not too far away who seemed to understand what I wanted, and could do it: digitize those memories onto a state of the art hard drive.

Gary, of Films-4-good, did a wonderful job, but he had to fix our camcorder and find a beta machine (because the ones we thought we’d preserved were dead), so it took a while – and I felt the pressure of having those carefully saved memories out of my house.

They are safe now. We have five copies on five hard drives, so each kid has one – and therefore it is offsite storage. Phew! Annotation may take a while – even watching them will take a while – but the main part of the chore is done, and the relief is enormous.

Gary also processed the Butcher family movies, narrated by my Dad who is no longer with us, so I have digitized home movies and footage from the turn of the century. The TWENTIETH century – and the time of Mexican dictator Don Porfirio Diaz, with scenes from Mexico City back then, and my great-grandfather Nicolás García Colín and my great-grandmother Rosario.


Don’t delay – and keep updating.


***Pride’s Children is on sale at Amazon for the ridiculous price of 0.99 until Jan. 30.***


Did you take the pictures?

Writers censorship by insiders still censorship

A page of roses. Text: Artistic integrity is for the writer to decide. The road to hell is paved... Alicia Butcher EhrhardtACTIVISTS TELL ARTISTS TO BE POLITICALLY CORRECT?

I received an email today from someone in my own community which reads:

Alicia,

Please, please, PLEASE change the name from CFS to ME.  I have just watched [X]’s TED talk, and that only reinforces how important it is not to continue using this dreadful name. We must NOT add to the wrongness of all that is wrong or not happening with this disease.

[X] might well be putting ME on the mainstream map. …

Thank you, [NW – name withheld]

And it raised my gorge, for reasons I will now explain.

A little background would set this in context

I started Pride’s Children at the turn of this century, set it a few years later into the time period 2005-2006, and locked it down in my memory to keep the details accurate.

It took me a long time to write, a long time to get it right, and a fair amount of time to publish.

Promotion is not my thing, but I’m womanfully shouldering the task, which used to be a purely indie/self-publishing task, but has now become a task most writers, traditionally- or self-published must undertake (or risk selling no books – traditional publishers only market those books expected to be big sellers or for writers in their top 1-2% – everyone else gets bupkis in promotion).

SINCE publication, a bit over a year now, among other efforts, I have asked a lot of CFS people to read, and possibly make a mention of Pride’s Children on their blogs or sites – and haven’t even had the courtesy of a reply.

I shrug – figure they have more important things to do with their time.

My own Facebook ME/CFS community has been far more supportive, and people there have made a huge effort to read (even when they rarely read books any more, and even more rarely something of PC’s length (167K words for the first volume in a trilogy) and complexity. And several have given me the incredible additional gift of a review – and I know how much it costs me/them.

I’ve asked other people connected to the ME/CFS community to publicize, read, review – again, no interest.

Fiction breaks down walls

I emphasize that fiction is one of the prime ways (cf. Uncle Tom’s Cabin, Black Beauty, To Kill a Mockingbird… in novels; movies such as The Philadelphia Story with Tom Hanks) there is to get through the barriers people put up against involvement around their hearts and minds.

I understand; the world used to have a disease of the week, and now it is more like the disease/charity/cause of the second on the internet, TV, and the mails. ‘Compassion fatigue’ is real.

I think I’ve written well; some readers tell me so.

And you’ve heard endlessly my statement that

the more there is a message in the fiction, the better the entertainment value must be

because people don’t like being preached to. Have an important message? Don’t tell people – let them find out for themselves through your characters.

So why did this email bother me so much that I’m blogging about it?

  1. Historical context: for a disease that has been called yuppie flu, CFIDS (chronic fatigue and immune dysfunction syndrome), SEID (recently – something to do with our post-exercise exhaustion), ME (for myalgic encephalomyelitis or encephalomyopathy), and others that didn’t stick very long, it is disingenuous to decide that ‘ME’ (with the first description- one I don’t understand because I always though myelitis was an inflammation the covering on the outside of nerve fibers (Google: infection or the inflammation of the white matter or gray matter of the spinal cord), and I don’t even remember what ‘myalgic’ means (Google: muscle pain). In any case, ME always has to be explained.
  2. Everyone’s CFS is different, though there is a core of symptoms (like a Chinese menu – so many from Column A, so many from Column B). I was diagnosed with CFS in 1989, and nobody did anything then or since to see whether there’s inflammation somewhere on my spinal cord (nor would I let them – the symptoms are bad enough).
  3. There is no approved designation worldwide – the European ME people say we US people with CFS don’t have the same disease, for example.
  4. There are no approved tests – up until now, and especially in 1989 and 2005, the diagnosis was made BY EXCLUSION of everything else they could think of that gave you the same symptoms. We’re hoping for research that will nail down a cause, and possibly give hope for treatment, at least for those who are more recent victims, or possibly not full of co-morbidities after all these years.
  5. Insurance companies and the CDC and the NIH change their designations all the time, for reasons which they always claim are ‘the best.’ I’ve seen a lot of these in 27 years, and few have stuck, and each one claims to be the one which will put us on the map (and wastes a lot of money on talk, administration, and stationary each time).

Another name change could come along tomorrow – and I hope it will when they figure out the cause – some exotic virus or virus fragment or new quasibiological entity – which will give the whole thing the correct context (cf. HIV). CFS is as good as any of these other designations – and has the advantage of being far better known (and not pronounced ‘me’ as in ‘I have me.’)

But of course the most important part is that I choose what I write

And was careful to make some of the above distinctions (ones which would be known in the time period the book was set in), before using CFS consistently in the rest of Pride’s Children, BECAUSE THAT’S WHAT WE USED BACK THEN.

And I guided the reader in and out of those distinctions with care and deliberateness to emphasize the (at that time and still now) UNKNOWN quality of this illness.

If you own a copy, it’s in Pride’s Children, Chapter 2, where Kary explains it to Dana. If you don’t own a copy, the Look Inside feature on the book’s Amazon page includes that chapter in the sample.

C’mon, wouldn’t it be an easy change, and shouldn’t I play ball?

In addition, the email sender shows a cluelessness about how a book is written, published in ebook and in print that tells me blithely to put in hours, days, weeks to change something – because X gave a TED talk.

Good for X (who belongs to one of the organizations I’ve gotten no response from – an organization within a few miles of me, by their address). This is X’s mission – along with more advocacy that I am very grateful for – and which I cannot do. X has put a life on hold (no choice in the matter because, well, of CFS. ME/CFS. ME.) and chosen to use connections I can’t do anything but drool over. I am happy for X.

And one of X’s project, which may make X famous (15 min.? hope not), had a very catchy and expressive name, which was JUST CHANGED to something entirely different I don’t like!

But I spent FIFTEEN years writing the first third (and outlining the rest) of what I consider a major novel with a CFS main character, before any of this other stuff happened (X has been sick for five years, and was in elementary school when I started this project).

I started serializing the final polished novel in 2012 – when X’s project was not even begun.

And there is no way in hell I’m going to make a change to my published story to accommodate anyone, just because they may end up being (probably will – those connections I mentioned – and a HUGE amount of effort) much more famous than I am.

I guess that covers it:

  • it was inappropriate to ask me to change MY book
  • it couldn’t be done, even if I wanted to, without an enormous effort on my sole part
  • and where were you, NW (name withheld) when I asked – I couldn’t even get you to read
  • I don’t think, personally, that CFS is all that dreadful a name; the name recognition, you see

It isn’t ignorance; the person (NW) who wrote has known me and my book’s existence for FAR longer than those five years I mentioned.

Thanks for listening. It is good to get these things written down – and out of my mind, where they tend to fester.

I will happily listen to opinions civilly offered.

How to live with other people and still stay sane

not-entitledTHANKSGIVING IS A SEASON, NOT A DAY

Every day I suffer silently through a ton of tiny insults:

my special cleaning tool left out instead of put in its place,
ice cubes used and not replaced,
a mess in the sink,
a surface which I cleared and cleaned mysteriously being full of ‘stuff’ again,

The list is endless. I wouldn’t, I don’t do those things to other people, and yet they do them to me.

And, like my Mother, who one day realized – and told me – that my Father leaving the cap off the toothpaste yet once more meant that he was still alive and with her, I know, and savor, this as the very small price of having other people in my life.

And I’m tearfully grateful.

The upstairs bathroom is once again clean all the time, and the carpeting vacuumed in the attic bedroom, and the bed made – and I miss our last chick every day, because it can only be that way when there is no one living in that space.

When I am no longer cleaning bits of hay out of random places in the house where our chinchilla Gizzy is allowed to roam for a bit of time in the evenings (she likes to run, and loves stairs), for whatever reason she won’t be with me any more.

I don’t know what it is they find especially annoying about me. The husband is a saint and actually looks confused when I ask him. The children have learned mom is opinionated and has relatively little trouble expressing herself, nicely, of course. The chinchilla, well, I provide food and special treats, and she consents to occasionally giving me her paw on command.

Those tiny insults? Bring them on. Writing them down? It’s one of the ways I store the memories.

And the ice cubes? At least there are still ways I can serve.


Thanks for the ability to make images, Stencil!

If you had only one year, what would you write?

gratitudeA THANKSGIVING REFLECTION

Today is turkey day for many people, including my huge and wonderful extended family in Mexico City, Detroit, and all over the western world. I am so grateful for them. I wish I were with them.

I am grateful for friends.

For self-publishing. Even for Amazon.

I realize how grateful I am for the ability to write, however slowly, but I’ve been feeling lately it is slipping away.

Part of that is the normal losses of life: the last chick has left the nest (we hope, for her sake and happiness, for good). I am in the middle of a huge effort to downsize. And another huge effort to walk properly again. Both these efforts take a lot of energy – and the energy has to come from somewhere.

A big part is chronic illness; it demands more than anyone can afford.

But part is also aging, and the thought that if I slow down much more, I will be at a standstill.

Time is finite – will you be happy what you do with yours?

So this morning I asked myself the title question: If you only had one more year to be a writer, what would you choose to be your legacy?

Many writers have had this question thrust on them. Some have quit writing – they’ve said what they want to say, and the work is getting onerous.

Others, like Sir Terry and Iris Murdoch, were taken from us by the disease no one seems to be able to fix except in mice – Alzheimer’s Disease. I hope AD also removed from them the pain of knowing they were losing it, because it is the most awful feeling.

But still others – and I hope to be in this group – use this question to focus, to re-prioritize and re-aim their writing, and to ask themselves if they really are doing everything they can – and whether the work is important enough to warrant the expenditure of so many chits.

I have a very short professional list:

I have to finish Pride’s Children: NETHERWORLD, and Book 3, tentatively subtitled LIMBO & PARADISE. Or maybe just PARADISE. And get them both published on Amazon.

I want to put the prequel short story, Too Late, up on Amazon.

I want them read, and I hope they will have an effect on people who consider the disabled ‘other,’ and not worth considering – or reading about.

I think I can accomplish those things IF I focus. Tempus fugit.

It is nice to consider that I have all the time in the world. But nobody ever really does. Life can strike the writer at any age.

Note that I’m also asking this question of people who don’t consider themselves writers – is there someone you should write to, or something you could write, need to write? That letter to your children? The one where you tell someone how much they’ve really meant to you?

What’s on your list?

There is always a new writing fear

A single red leaf on a concrete background. Words: Fear of failing. When you have something to lose. Alicia Butcher EhrhardtFEAR OF LOSING WHAT YOU HAVE IS PARALYZING

One of fear’s main jobs is keeping us safe: safe from falling, safe from making mistakes – from failing.

But, as many things, it is a more useful servant than it is a master.

I visited WriterUnboxed.com this morning, as I do most mornings, to get my brain in gear, give it time to focus, possibly preload it with something creative.

And I run smack into a blog post by Annie Neugebauer in which she talks about how to overcome the fear of making a mistake.

And not just any mistake, but the fear of falling flat on your face when taking a risk in your writing.

It is possible to miss the source of your fears

I left the following comment:

I have found that what scares you to write doesn’t often get the scary reaction – it’s more likely to be ignored, after all that courage it took to face the fear. In either case, though, you’re absolutely right: taking the dive feels good.

I’m doing that right now, diving into the fears I deliberately planted in the middle book of a trilogy – from the very beginning. I have spent years asking myself if I really had to go this route. The answer is that I do – there’s no way around it, and there’s never been a way around it.

If no one else in the world likes it or thinks it’s essential, oh well.

But now that a small number of readers have said they’re waiting for the second book, and the first one is slow, I just realized that I have been afraid of disappointing those readers! Who didn’t even exist when I started the first book.

What a concept: being able to disappoint readers.

Understand this first: the whole of what will be the Pride’s Children trilogy was meant to be, was planned out to be, a single book.

Due to my plotting with Dramatica, when the story got too long in the telling, the breakpoints to split it up were obvious (one of the great pleasures of plotting thusly), and it took very little to separate the pieces out into three volumes instead of one.

Writing Pride’s Children: NETHERWORLD has not been automatic

I expected it to be easy; after all, I was just going to the next scene in a long list of scenes, and thought I would merely be doing what I always do: gather what I have assigned to the scene in Dramatica, Save the Cat, The Key…Power of Myth, The Fire in Fiction – my go-to books while writing; structure everything into a scene that ‘happens’ in time, instead of a collection of bullet points; become the character – and write.

And I’ve been baffled by how hard it’s been.

I even started a post (in draft) about how hard the first scene was to write (short version: a new kind of scene required some new thinking).

But it wasn’t until this morning, after Annie’s questions:

What scary drop have you been avoiding?

and

And are you willing to accept any bruises or ego dents that may come?

that I realize what was going on: a brand new kind of fear, one I’d been vaguely aware of, but hadn’t fully engaged with.

I may get reassurances on this one, of the “I’ll like anything you write” or “Whatever you’re planning can’t be that bad,” from my friends who really believe that, and have taken risks of their own.

Facing reality may not change it

But those reactions are promises made to a future which doesn’t exist yet. When making the comment – and encouraging writers to take the risks – readers and other writers don’t know what they’re endorsing: they are writing a blank check.

If I blithely accept the recommendation to keep going – it could still turn out to be something my readers hate.

All I can say at this point is that it is built into the story from the beginning, and if you liked PURGATORY, you have already bought into the foreshadowed premise, whether you know it yet or not.

If you don’t like it, remember it was a choice made with full realization that it is dangerous – and that I tried my darndest to make sure it was the best choice. The only choice I have is to write it as well as I can – and to be as accurate as I can be to the mind of the character I’m writing in.

I am trying to sneak it past the reader, which, paradoxically, may require mentioning it early, and then being almost too subtle.

You just gotta trust the writer

I remember being delighted by a comment in a review:

I honestly don’t know how to explain the grip this book had on me from the first. I couldn’t stop reading it, and I wanted it never to end. I’ve read other books that affected me this way, but the authors always hurt the spell by tossing a plot bomb in through the window. Ehrhardt may do that before the trilogy is over, I can’t see the future, but she doesn’t do it in this book.

That’s, of course, one of the readers I don’t want to disappoint, who were kind enough to say I knew how to finish a book.

Maybe, when it’s all finished, I will describe why it must be the way it is.

I hope it will gain more readers than it loses me. If not, I am still writing this trilogy for me.

As a reader, what do you do when the ending of a book doesn’t satisfy you?

As a writer, have you come to this place?

Comments are most welcome.


Thanks to Stencil for the ability to create ten images a month – for free. If I ever need more, I will be using them.

Also, thanks to Blasty for helping me try to remove unauthorized downloads of Pride’s Children from Google search results. They are looking for more free beta readers to help them finish figuring out their methods. They have removed over 2000 infringements already for me. I mind, because I don’t want my work enticing readers to phishing sites. If you want to read for free, ask for an electronic Review Copy and consider writing a review.

Pride’s Children’s rankings after a year

pc-1-yr-sales-rankSALES RANK

pc-1-yr-kindle-romance-contemporaryKINDLE, CONTEMPORARY ROMANCE

pc-1-yr-kindle-litfic-literaryKINDLE, LITERARY FICTION

pc-1-yr-author-rank

AUTHOR RANK

IT’S BEEN AN ODD YEAR AS A FIRST-TIME PUBLISHED NOVELIST

None of my sales have done much.

Word of mouth has been how most of the sales came about.

I am basically hand-selling to people I meet who also seem to have reading habits that mean they might like PC.

Now that I have a decent, if small, number of reviews (25), with at least one at every star ranking, I will be trying a few Fussy Librarian offers, to try to reach people outside of my immediate circle. If FL will have me.

KU, which I had high hopes for, has been a dud. Being in or out hasn’t made much difference.

The last Kindle Countdown Deal sold two copies (0.99 – so I got 0.67 each). Definitely not worth the effort.

Goodreads has provided friends – one or two sales; ditto FB and Wattpad. I have sent out a LOT of review copies (just ask – I will send you one). Everyone says I’m pricing wrong, but the 0.99 sales do nothing – and you can always have a free review copy!

I’m sure this is the way beginners start; I also spent way too much time watching it happen, as I’m sure many beginners do.

I’m well started with PC: NETHERWORLD, the middle book in the trilogy, full of surprises (if you can trust me).

And it’s been otherwise a very crazy year, so I think I’m going to put my head down (as soon as I can for sure is next Wednesday), and write, and try not to panic. Careers last a long time.

I liked the pretty graphs – and a year seemed to be a good time to review the results.

Oh, and I’ve sold, I believe, 7 paper copies.

I have avoided advertising which focuses on me, and kept it on story and writing (except for the online ME/CFS group where they already know me, and this blog, of course). I don’t know if that’s wise, but it is a one-way street to move into talking about a disabled writer, which does funny things to most people’s minds (such as lowering standards, and expecting inspiration, and just plain not wanting to read) which I’d rather avoid. On the other hand, an awful lot of books come out every year.

Hope this next 12 months works a bit better.

ETA: Author Rank pic.

 

Censorship, prudence, peace-making, black-listing

nuanceIT IS IMPOSSIBLE TO BE VALUE-FREE WHEN WRITING

I’m having a very hard time blogging, commenting, and being a responsible citizen on Facebook right now.

Responsible, because I want to stand by my words online, even if you read them in a month when the craziness is muted. Not gone – the consequences of this election will haunt this nation for years.

Born in California, reared in Mexico City, and living permanently in the States since I went to Seattle U. to finish a college career interrupted by non-student communists shutting down the National Autonomous University of Mexico (UNAM) in 1968-69, I have NEVER seen an election like this one.

Being an INFJ (sliding to an INTP depending on my mood when answering questions – it’s impossible to tell with older people who have adapted the world to themselves with practice), supposedly makes me a peacemaker who, according to one online site,

‘their real passion is to get to the heart of the issue so that people need not be rescued at all.’

and

‘Egalitarianism and karma are very attractive ideas to INFJs, and they tend to believe that nothing would help the world so much as using love and compassion to soften the hearts of tyrants.’

The problem is I’m censoring myself

I’ve always tried to express my own opinions, and not jump on bandwagons too quickly. I spend time writing comments, re-read before posting, and tone down things which might be taken as fighting words.

The touchstone: not saying anything online I wouldn’t be willing to say in person, with that willingness being tempered by having to achieve something positive, or what is the purpose of talking.

I get snippy occasionally – everyone does – but tend more to pour oil on water than light it up for flames.

But I can’t tell you how many times lately I’m deleting entire comments, leaving challenging statements unchallenged, NOT saying something I really think should be said.

And not just about politics, but on Goodreads, in private FB groups, and even on that bastion of even-handedness and civility, ThePassiveVoice.

And it’s causing me some real discomfort.

Firebrands exhaust me

I’m not the best person for defending or advocating for anything – my energy is too limited.

I have the comments. I WRITE the comments.

And then I delete them, because the climate seems fraught. Everyone’s temper is short. People who claim to be Christian use language Christ would blanch at to impugn someone else’s ancestry.

Racism, sexism, ableism – all are alive and kicking. And punching. And screaming.

I blocked someone on my Facebook page I’ve homeschooled with, and known for twenty years (not close lately, but still).

We used to paper over differences, not mention differences in beliefs where it was not important, strive to find the common ground. Our homeschool group had several Jewish families, at least one Muslim one, ours (the Catholics), and a large collection of mainline and evangelical Protestants – and we coexisted and went on field trips together.

Nuance, thesauri, satire

It’s easier to stay out of the fray.

Indie publishing and traditional publishing long ago developed into separate camps with entirely different belief systems. I read, formed my own opinions, chose the indie camp and don’t regret it.

But, as a writer, I know perfectly well how to slant word choices to make a subtle point. Except that the subtlety seems gone, and everything said seems to lead to an assault on the castle walls.

I hope to hell it’s temporary

And that I won’t be ashamed of anything of said during the proceedings.

But I’m shaken. And unhappy. I’ve always thought it was a great thing to be an American, and that, regardless of problems, this is where I want to live. I’m looking forward to when diversity is even greater in our country, and education serves ALL our kids well, so they have futures.

And now we’re going down a possible black hole. And even the possibility of the black hole has done huge damage with its gravitational force.

Surely we can do better than this.

What to do? What to do?

I’ll gird my loins, go back into the fray, keep attempting to use reason while understanding there is always injustice.

And hope the rest of us are shaken enough to look seriously at ourselves and make sure we’re not making things worse. Platitudes, all, but I intend to try.

This can’t be, as someone said, ‘the end of the American experiment.’

Have you had a similar experience?

The new impostor syndrome: redefining the literary genre

Single perfect yellow bloom with the words: Quality - who decides. Alicia Butcher EhrhardtRANTING ABOUT CATEGORIES GETS YOU NOTHING

It is funny how the meanings of things change, and with the change, a whole cascade of other meanings change.

Critics have quoted a ‘tsunami of crap’ as coming from the new self-publishing authors; defenders have responded with versions of Sturgeon’s Law: ‘90% of indie/SP/SF/… is crap, but 90% of everything is crap.’

The percentage varies according to the viewpoint and attitude of the critic.

Is literary the new mainstream?

But I digress from the point I wanted to make, and which I’ve mentioned before: that the category my writing used to fit into naturally, mainstream commercial fiction – set in the present or near past, with realistic settings, dealing with current human problems – has disappeared, leaving me with no category to put my non-genre fiction in – except General Fiction.

General Fiction covers too much ground, and makes no implications of complexity or quality.

Those of us in this position who aim for complexity and quality are thus, perforce, labeling ourselves ‘Literary Fiction.’

And ‘literary fiction’ is now considered a genre, much like science fiction or paranormal romance or mystery/thriller.

Who are the ‘literary’ writers?

Which puts me in an odd position of ‘competing’ with the likes of Saul Bellow, Toni Morrison, and Salman Rushdie – who are highly literate types of the kind who publish in literary magazines and are pushed by literary small publishers and not expected, necessarily, to sell much. But who may aspire to Nobel prizes in Literature, and the Pulitzer Prize.

Or with the likes of Donna Tartt and The Goldfinch, a ‘literary’ anomaly in that it sold millions of copies.

I feel like an impostor when compared with what I used to assume were the literary writers. I feel less of an impostor when compared with the books that have done the same as mine, crowding into the literary category, but not necessarily supported by the MFA or the professorship in English Literature which used to be de rigeur, credentials I don’t have.

What the ‘real’ traditional practitioners of literary fiction think of this travesty, I can only imagine. It was hard enough competing against all those MFA graduates for the limited number of poorly-paying slots in literary magazines with tiny distribution but with prestige, and now they have to compete with all those upstarts who should have been weeded out firmly by the editors at the publishing houses who were known for publishing literary works.

But, HISTORY…!

Possibly, I am reversing an earlier unfortunate trend, in which authors such as Charlotte Brontë wrote ‘a novel’ such as Jane Eyre, which has now become a ‘literary’ classic. They used what they knew: an education in the classics, including Greek and Latin, would have been natural for a parson’s children; their writing reflected who they were, what they’d read, how their world was organized. They were not aiming for ‘literary’ – but simply wrote with the care and knowledge that would be common to their position in society and their level of education.

That education would have been based on reading widely; there may lie the root of my comfort with the idea of classifying my writing as, among other things, literary. My youth was spent reading everything I could get my hands on – including much of what is now considered literary canon.

I found, though, that I did not like a lot of the more modern work. I read Toni Morrison and The Color Purple and Seize the Day and hated their preciousness in focusing on language to the exclusion of plot and characters I could identify with (yes, that makes me a heathen). I read Down and Out in Paris and London, which I liked, but can’t get past page one of Ulysses.

Categories change; we change with them

So I’ve decided not to worry about impostor syndrome and calling myself literary, and assume that the category is broadened, by necessity, to accept us johnnies-come-lately who actually may be hewing to the earlier, classical meaning of novelist – one who writes stories – without going so far as to kick the others off the high end of the island (those who write stories I can’t read because they seem to be missing the ‘story’ part).

De gustibus non est disputandum (no accounting for taste). There’s room for all of us, and, in this day of algorithms, we must make some accommodation for others so we may all be found at Amazon.

We indie literaries probably escape the notice of those who are firmly in the publishing grasp of the real literary publishers, anyway. But I’ve stopped worrying about being an impostor – because I care about the results.

Are you categorizing your writing as ‘literary’? Do you find reading material with ‘literary’ as a keyword? What do you believe the literary writer promises the reader?

Social Security and disability retrials in Kentucky

If you’ve been following this blog for a while, you know that I have occasionally boosted posts from an online friend about the almost 1500 cases the SSA is re-trying in Kentucky – because the lawyer who won disability for these clients has turned out to be not what he should have been.

The SSA is blaming the legitimately disabled clients – for their poor choice of lawyer (Eric Conn) YEARS ago.

Well, there may be hope on the horizon – a judge in one of the cases has stated:

Federal Judge Thapar just entered an order declaring that the SSA has treated Conn’s former clients worse than Al QAEDA members in ruling that the ongoing hearings are unconstitutional!

Visit DC’s site to see the links and more information, but I would like to pray that this is the break the disabled clients need to get through some of the unbelievable machinations (What is there to hide? is my question) of the SSA.

If you have the stomach for it, read more of the posts on the site, boosted from Ned Pillendorf’s site (he’s the lawyer coordinating the efforts to defend all these folk).


I am no longer subject to the whims of the SSA, as I am ‘retired,’ but found it incredibly frustrating myself (was turned down the first two times, and got very little retroactive disability income when it was finally granted) to deal with them.

And I never did manage to find a way wherein a disabled person can publish (assuming they’re up to writing) – knowing what I now know about how erratic writing income can be – because the SSA can only deal with X hours per week at Y dollars as being a source of income for a disabled person. I’d give you more details, but it is incredibly short-sighted and BORING, and I wasn’t able for years to get them to look at how writing income would affect disability income.

Also fortunately for me, I had nothing publishable until well after I was ‘retired,’ so it didn’t matter to me (I didn’t withhold Pride’s Children – it took me that long to finish it) that they couldn’t handle it, but young disabled writers would be destroyed by the rules.

This effectively silences them – unless they write for free.


Remember – disability and illness can happen (and are five times more likely than death) to anyone in the years before retirement. This affects all of us, especially artists and writers, and we don’t even know about it until it is too late.

The curious incident of the train in the nighttime

Picture of dog. Words: No. You can't. Alicia Butcher Ehrhardt

WARNING: DETAILED ANALYSIS OF A FAILURE. MAY BE BORING.

It is my nature to analyze ‘what happened,’ especially with the physical and mental details of what it is to live – and try to write – with ME/CFS, and the only way I have of remembering for sure is to write them down.

I share – because there may be useful information there for others, with or without CFS.

The beginning: when I could have and should have made a small decision

We’re sitting watching TV (the second part of Luther, Season 4), and it is exciting, as TV shows go. This is relevant.

The text comes from child in NYC at 9:49 PM: “I’m getting in at 11:08.”

I text back: “Will pick you up at 11:08.”

This is our system: if I don’t confirm with the correct time, we’re not good yet, because I’ve gotten it wrong before. And she had to wait at the train station.

It’s a good system. I know when she’s getting in, she know I know, and we both have it in writing.

I don’t have to remember.

The MY problem starts

But note: at 9:49 she is already ON the train. And I have one hour and 19 minutes before someone has to be at the train station to pick her up.

It’s still good – and she doesn’t know what train she’ll be on unless she’s either on it, or is close, and knows she has enough time.

There’s always another train (until 2 AM? sometime, and then they start up again a few hours later) from NY to NJ.

At worst, she’ll spend an uncomfortable few hours sitting in the train station.

I mention the arrival time to husband sitting next to me.

He says (and this is the crucial bit), “I’ll pick her up.”

The next bits are on me, and are why I’m writing.

I said, “If I have to get her, I need to take a nap before.” See? I know my limits.

He says, “I’ll go.”

The problem sticks up a finger to the wind

We watch the rest of the program, another twenty minutes or so, chat about the ending.

I see what I should have suspected, given how the last couple of days have gone: he is falling asleep.

I say, “I’ll get her.”

He says, “You sure?”

I say (big lie, it turns out), “I’ll be okay. It’s only ten minutes to the train station.”

He says, “Okay.”

It’s now about 10:10, maybe 10:15 (reconstructing from memory here).

I LET the MY problem compound – because I’m not making good decisions

And this is where I made my fatal mistake (well, okay, not fatal fatal, but fatal as in fatal mistake): I futz around a bit putting my embroidery away, and don’t head straight up to bed for a nap before picking her up, because I’ve been skipping that last night lately (it happens inconveniently in the middle of watching the little bit of TV or a movie we do in the evenings – which is also our chatting time for the day).

But I forget that it doesn’t matter if I’m sitting at my computer wasting time, surfing, writing an email to a friend: I am not risking anything major by missing that nap and being rather non-functional. After all, who can tell what level of non-functional I’m at late at night, and I ALWAYS resist lying down for these naps I need, because that’s what mental two-year-old do.

He trundles up to bed, I look at the clock – it’s now 10:35.

And I’ve just, by being non-functional already, priced myself out of that nap.

The MY avalanche begins

Because I do what I should have done when I said I’d go: the calculus of napping and time and leaving the house that is required – for me to be a safe driver on the road.

Here is what I HAVE to do: start getting ready 10-15 minutes before I need to leave the house, dressed, with shoes on, having my purse and PHONE with me. And my driving glasses, which I don’t keep in my purse all the time necessarily because I have two sets – day and night – and keeping them both there makes the purse too full and heavier.

I need to leave an extra minute or two if I decide to wear my leg braces. They’re an annoyance when driving, just a bit awkward, but help if I need to walk or stand more than a minute. I decide to just put on sandals. It will take me longer to walk to the car, but I won’t have them on while driving, and I won’t have to put them on.

I need to put clothes on, because I am in jammie-equivalents 99.99% of the time.

I need a pit stop.

I need to get out of the house, get into the car, and settle the controls and mirrors. I know others have used my car, and they won’t be in the right place.

The avalanche gets a’rolling/sliding

So I look at the time again, and there MIGHT be time for a shorty – a 10-15 minute mini nap (oh, how I wish I’d taken it!), but only if I get a move on, make the decision, and MOVE.
This is me, non-functional at night. I don’t make the decision.

Instead, my stupid mind moves to ‘what I need to do to just drive safely to the train station.’
If necessary, she can drive back. Unless she’s too tired.

I decide: Diet Coke.

I know it’s late at night, and caffeine after 3PM is a huge no no because it keeps me up at night.

But we’re in not-thinking-straight-crisis-mode now, and the Diet Coke WILL give me the kick I need.

I can take just a sip, right?

I change my mind: I won’t drink it before I leave. I will take it WITH me in the car, and that way won’t use it unless I need it.

Execution

I get dressed, grab my purse, put the sandals on.

One last pit stop and out to the car.

I sit in the car, adjust the mirrors.

And yup, you guessed it: it is now 10:55 on the car’s clock – and I forgot to bring the Diet Coke.

Damn.

Decision time.

I figure out I probably have created enough adrenaline to do this.

It would take me 5 minutes to walk slowly back into the house, climb the stairs and get the forgotten Coke, and get back to the car.

I know the train may or may not be on time, it sometimes takes them a long time to let passengers off, and there is a long walk from the far platform, and the Hamilton Train Station is a relatively safe place for her to wait for me if I am a few minutes late, even at 11 PM.

My mind emphasizes ‘relatively.’ I decide to skip getting the Coke, go the ten minutes or shorter in my immediate future, and get there on time.

Remember, these are all MY decisions. I want to be the perfect mother, saying, “It’s fine – I’ll get her,” to my husband, and showing up on time for my daughter, then one who can be counted on in an emergency to do what’s necessary.

Never mind that I’ve CREATED the EMERGENCY.

Because I so often can’t do these things. Because it is humiliating to be sick and ALWAYS dependent on other people. Because I rarely leave the house, and this is a short trip which should be within my limited capabilities. Because, because, because…

And the folly succeeds!

I do it.

I drive to the train station – and hit ALL the red lights on the way, at their maximum durations. It doesn’t matter – I’ve allowed for the maximum times, ten minutes.

I’m fine.

I get to the train station, and the train pulls in as I stop in the little parking lot opposite the entrance.

In a couple of minutes, the passengers start coming down the long staircase from the overpass.

This time she is the second person.

I flash my lights, she comes on over, and we head home.

On the way home I mention a tiny bit of the above. She says, “I could have driven from the station.”

I say, “I know, but I’m fine.” With a second person in the car, my anxieties calm down just fine.

Another bad decision? Probably. But easier – and we really are that close to the train station. 5 minutes – if you get all the green lights. Which we did. On the way back, of course.

No big deal – picking someone up at the train station and driving home.

The beginning of a really bad night

She says she’s tired. I tell her I’ll put the chinchilla to bed if she will feed Gizzy her treats. We agree. I add ‘put out foods for Gizzy’ to my pre-bedtime list. It’s a short chore in principle. If Gizzy has been out of her room, it may take longer to get her back if she’s hiding under the living room couch and I have to chase her out with a flashlight (the light, not the metal part).
Later, it will turn out that Gizzy never left her room (she sleeps under the bed) because it was Italian-American weekend at Mercer County Park, and they ended with fireworks, and fireworks turn Gizzy into a shell-shocked ball. No biggie – I leave out her food and close the door earlier than usual.

Now the payment for my folly really starts.

Daughter goes up to her nightly struggle with getting to sleep.

I am too wound up to go right to bed, but manage to force myself into bed at around 2AM, not too bad for me.

And the night of horror starts.

Why? Because I have broken the basic rule: you’re NOT normal

The root cause is the BRAIN FOG I live with.

The proximate cause is that I can’t metabolize adrenaline (which I know). My body insists on twitching every few seconds, just as I’m starting to fall asleep. It requires the FULL set of stretches and isometrics I do to get rid of the twitchies.

There are oh, about ten, bathroom trips. I have minimized water, though really thirsty. Doesn’t matter. I have a few sips.

I go up and down the stairs too many times.

I have a small protein shake – which, because it is full of ice, usually makes my core temperature go down and lets me get sleepy.

I end up eating two Atkins bars in the middle of the night.

I get up and play sudoku on the computer until I realize I cannot make that last column add up no matter how hard I try.

I spend time lying there with the lights off, exhausted, knowing it’s the end of the world, and I’m having trouble even doing my meditation breathing, and I’m going down hill so fast it’s scary, and I’ll never be any use to this family, and how could I possibly have thought I could do something useful like picking my own child up at the train station?

Eventually, around 5:30, I finally get to sleep.

Cost accounting: I lose a day of my writing life again

My happy body gets me up at 9, later than I’d generally like, ridiculously early after nights like this.

I put myself back to bed after what seems to be the twentieth bathroom trip of the night.
I sleep until almost noon.

And THEN it finally hits me: this is the AFTERMATH of adrenaline, you idiot. It happens every time – which is why you don’t allow yourself emotions, and you certainly don’t allow yourself adrenaline.

This is MY fault.

Again.

My decision-making functions don’t work, and especially don’t work when I’m tired. And go all to hell when I push them.

The conclusion: write it down.

Maybe it’ll serve as a cautionary tale, even though it’s a stupid little story of a single night.

But, you see, it will cost me today’s writing time (for fiction) because I’m singing at the Princeton U. chapel at the 4:30 Mass, and to get there for practice I have to leave the house at 3, which means, backtracking, I have to be in BED for the pre-nap by 2:10, and have to allow for something to eat in there somewhere, and I desperately need a shower, so I’ll have to nap with wet hair…

I started writing this at 12:03, and it’s almost 2 PM.

Another bad decision? Probably not. I can’t write fiction under these conditions – too jumpy.

Why do I write these things in such detail?

Because I’m working on a non-fiction book, working titled PAPER BRAIN, because no one has solved this for me in the almost 28 years I’ve had this stupid disease, and if I don’t write it now, I’ll forget.

This is, by the way, why Pride’s Children: NETHERWORLD will take a long time.

But I’m working on it.

And I could go on in this vein for another hour. Husband came in, and said, when given the mini-summary, “I could have woken myself up.”

I won’t even tell daughter – she has enough on her plate, and did NOTHING wrong.

But some day I’ll read this and remind myself, and maybe I’ll get smarter, or at least remember.

Or someone else will.

And I will continue to try to avoid adrenaline, the adrenaline I thought I wasn’t going to create or need – last night.

Be warned.


This was pretty much the way it happened. Stream of consciousness writing.

Don’t pity me. It’s my life. I try to learn from it.

I’m okay. I’m going for that nap – it’s 2:07.

Drop words in the box if it resonated. Thanks!


I keep forgetting: if you like the blog posts, consider buying the book in the sidebar – it’s written by the same detailed idiot with experience.

Copyright 2016 Alicia Butcher Ehrhardt