Category Archives: Brain training

A place to lump all those efforts to create new neural pathways to replace the ones that die; serious efforts to stave off the dementia which runs through my maternal ancestrecesses who lived long lives; stuff that makes my brain hurt, and thus must be good for it.

Depression: unavoidable consequence of life-altering surgery?

Bird flying into the sunset. Text: How far away are the Grey Havens. Alicia Butcher Ehrhardt

THERE IS SUCH A THING AS TOO MUCH LOSS

I don’t want to have to write this post, but I’m coming to the conclusion that this is the final ‘tail’ I have to deal with.

I don’t want to believe that it may be a consequences of having my life saved that, for a year, the last drug I’m on may dog my steps, make me wish I hadn’t made it, drive me to a different place where it isn’t worth getting up in the morning.

Maybe I’m writing this prematurely, but even if the whole experience disappeared tomorrow into a (tiny) burst of continuing ability to write, it HAS existed. It is REAL. And I’m probably not alone in having it.

Why would a platelet control drug (Effient) cause problems?

Because one of its side effects is ‘low energy.’

I thought getting the drugs with the major side effects out of my system would take me back to where I used to exist, in my low-energy CFS state that allowed a couple of hours a day for writing fiction – my ‘good time’ – if I did everything right: got enough sleep, took my naps, didn’t eat until after writing (to avoid diverting blood to digestion I needed for thinking), didn’t eat carbs, didn’t leave the house much, kept the adrenaline low by suppressing most of the effect of emotions…

What this actually means is that I need to achieve an energy level somewhat above bare-existence levels for part of the day, and don’t have much of a margin of safety. Many days, especially if something else HAD to be done, by ME, I had to use it for something other than writing fiction. But most of the time – maybe 5 or 6 out of 7 days – I could count on that piece of my old mind hanging around for a bit.

And now I’m down to 1 or 2 out of 7 – and it’s simply not enough to keep me from getting depressed – and then having to use some of those days and some of that energy to drag myself out of the pit of despair.

How do you handle depression?

A long time ago, when I first got CFS, there was some evidence that taking small quantities – about 10% of a regular dose – of antidepressants, and my doctor at the time tried four or five of them over a period when I was desperate to get some of myself back.

And the reaction to medication that still is with me – overreacting to small amounts, and usually not being able to take enough to reach a therapeutic dose – happened back then. None of the drugs I tried had any positive effect; all had side effects which made me beg off them; and on none of them did I reach even that 10% dose before this happened.

It seems to be my version (I’m far from alone in this among people with CFS (PWCs)) of this d**ned disease.

But because of this experiment, I won’t try anti-depressant medications again.

Long ago I learned Cognitive Behavior Therapy – from Feeling Good: the new mood therapy, Dr. David Burns. It takes time, involves, for me, a fair amount of writing it all down and dealing with it on paper.

But it has the advantages of:

  • no drugs for my system to deal with
  • no side effects
  • available in the middle of the night – or any other time and place
  • completely under my control
  • always works for me (eventually)
  • doesn’t need a therapist, a doctor, or a pharmacist – or a prescription
  • no cost

I can’t tell you the number of times in almost three decades that I’ve realized I’m getting overwhelmed, started writing about it, figured out what the important threads were, and worked my way out of depression that was making my life uninhabitable.

I don’t push this on other people – many other people can handle a drug just fine, don’t get many side effects, and just need their brain chemistry adjusted; or, if in a major depression, need far more help than they can manage this way. But it’s what I’ve used all these years, and it works for me – if I put the time and effort in. Which I always end up doing because I can, I don’t like inflicting this self on my family, and depression ruins what life I have left – and bring my fiction to a standstill.

Back to the life-altering part

It is characteristic of many events in life that change you from one person into another – love, marriage, a child, getting kicked out of school, divorce, joining the military, losing a parent… – to make you reassess what is important to you, what you are doing with your life.

Having stents installed, and finding out you might have been heading for a heart attack otherwise, changes you. It is a curious ‘surgery’ because there is little in the way of cutting and healing from that (except in my unlucky case, where I blew a gasket in the hole in my femoral artery – I still have the damage from that).

But that almost doesn’t matter, because I KNOW I am now another person/body. For one, I am now a ‘cardiac patient,’ with the implications of doctor supervision, meds, visits to the cardiologist, tests, and whatever changes these things may force on me.

And of course there is the mortality thing – events remind you time is limited.

It helps to focus you.

But I had ONE thing left to me, writing fiction, and I am dealing with not being able to do that ONE thing.

The rest of life doesn’t conveniently take up the slack

In addition to writing book 2 in the Pride’s Children trilogy, I am trying to market book 1. This has slowed to a standstill – I am hand-selling a couple of copies a month at best. It takes me a lot of time and many emails to get someone to accept a free copy for a possible review – which I’m happy to do when I can, but is happening very rarely lately.

I’m running Amazon ads (thanks to Brian Meeks for getting me started where I couldn’t figure out the basics); so far, since Feb. 4, Amazon tells me I’ve spent $30 on ads, and have sold one copy (though I think they may be responsible for a few more, but possibly not directly from someone clicking on my ads, which is what they track). I can leave that running in the background, and hope for a groundswell in the future.

I am also trying to finish putting up a short story prequel, Too Late, so that those who don’t want to read it here on the free fiction tab – or who prefer their own copy managed by Amazon for their Kindle – can have it for 0.99. Or people who get to my Author Page can select a low-cost alternative to the outrageous-for-an-indie price of $8.99 for an ebook (compare to big publisher prices which are higher) to read to see if I can write. Or even so I can make it available for download to anyone joining my newsletter or following my blog.

And of course there is cardiac rehab – and its attendant paperwork. I don’t even want to tell you how much time I’ve wasted on that, and I haven’t even started yet. When it happens, in a few weeks, it will also sap my energy by making me leave the house two more times per week, and expend energy I don’t have. The hope is that it might also eventually help. Not in the conventional way: I can’t do aerobic exercise, so there is no ability to increase aerobic capacity; the best I can hope for is a tiny increase in ‘fitness’ over time that might offset the decline I’ve been in.

If nothing else, it will shut the cardiologist up that I’ve tried it.

I’m not blogging as much – have nothing interesting to say other than to relate my experiences with the medical system as I’m doing – another indication of low energy.

And I’ve started going for the heart-rate limited slow walks which I’ve been trying to get to for ages (and may have been made more difficult by that blockage) – the only way I know for a PWC to increase fitness on her own. That is, I got ONE walk in – to the middle of the next block and back – when it was 66 degrees the other day. We’re back in the 30s, so I can’t do that for a while again, but will try to find the energy in the hopes that there might be eventual improvement in something, anything.

I still have to finish things such as my mom and dad’s tax returns (he died in Aug. 2014, I got the paperwork to do the next year, and the IRS has stymied my every effort so far to get the right information by… well, you don’t need the horrible details; sufficient to say it’s not done yet).

We want to get this house on the market – and move so husband doesn’t have to deal with me by himself in the future. And because it is so much work just to maintain a home and yard, and I’m not capable of helping any more.

Moving will be its own can of worms – as will finding the right place.

So, more stuff on the to do list – and less to do it with

I’m not surprised to be depressed under these conditions, but I’m not managing to get control of it, because the one reliable thing I had that helped – writing fiction – isn’t coming back fast enough.

I should be happy to be alive. I am grateful, but not happy. All it does right now is remind me how I’ve lost another huge chunk of me, and I can’t figure out how to get that miserable chunk back.

I don’t think most people realize how tiny my life is already. I haven’t had the energy to go to church, or to sing at the Princeton chapel, or to go to the Folk Music Society sings and concerts – the few things that used to get me out of the house.

I have an assistant – so she has been getting some of the backlog things, and the recurring things, done – we need to move to the dejunking, final fixing, getting rid of, downsizing and losing even more things from your life to fit a smaller place. I barely manage to work with her by giving her instructions when she comes. I’m no help any more lately.

There is such a thing as too much loss.

I’m perilously close to that point.

Comments?

Do right for your heart but be prepared for an awful ride

Sunset at sea. Text: There is only HOPE WHILE there's Life. Alicia Butcher Ehrhardt

I HAVE DODGED A NUMBER OF BULLETS

I will be terrified for a while.

I will have to deal with emotions both new and accumulated, and emotions are very hard to deal with if you have CFS, partly because the adrenaline which is the aftermath of much emotion takes forever to process out of my body, and so makes me ill for far longer than it is usually worth the original emotional outburst.

I have to deal with new medications I didn’t ever want to take, and which fight with CFS (potentially). I may have to deal with both more pain and with the cardiologists being unhappy I’m taking even the amount of pain meds I was taking before.

And I will have to learn to be more grateful for and more gracious about what may be the most important outcome: that, even in a reduced capacity, I’m still alive. Funny that, right?

I process things by writing about them (the brain doesn’t like to do internal processing, even when it can, any more).

The whole subject is incredibly boring.

And I have some obligation, willingly assumed, to share.

As part of a community, I value my online friends

Enormously. Probably more than most people.

I have a loving family – I am immensely grateful for them. And for the space they give me. They’d rather have me live in Mexico City with the rest of my sisters, live that lifestyle with help, and socialize more. I’ve had a limited capacity for that my whole life, but it doesn’t mean I don’t value it and feel wistful about it. I hope this post will clear up some of the details of the past three weeks for them, too.

But I’m trying to make sense of it AND bring my online friends up to date simultaneously, because there is no energy to do this for each of you (I will probably be sparser in replying to comments for quite a while), and the main lesson is easy and the personal details pretty obvious if you understand limited energy.

I don’t like it when my friends disappear from the blogosphere – but if we knew each other better we probably would be communicating by phone or email more. Even very good friends, family, people I’ve known for decades will have to be content with this for a while. I start from no energy when I’m my most ‘normal’ – and this ‘event’ (as the cardiologist calls it) has taken, and will take for a while, everything I have.

I OWE EVERYONE MORE. REALLY.

THE SHORT(EST) version

I had chest pains Superbowl Sunday after the game (no, I don’t care at ALL about sports, didn’t watch any of it). Kick in the chest by a mule.

Because it was Superbowl Sunday, I didn’t immediately go to the ER or call 911. This was my ONLY mistake, and it could have been fatal, but the chest pains subsided, I felt like I had avoided looking like an idiot, and I went to sleep. (Note: I had had a cold protein shake. This is relevant.)

The next morning (Monday) I called the cardiologist’s office, while drinking my (cold again) morning protein shake. They moved my appointment from later in the month forward to Wednesday, two days away. The nurse told me that if I had chest pains, I should call 911. I hung up – and a mule kick hit. Husband prepared to DRIVE me to the ER (we would have gotten there sooner, it turned out, but don’t do that unless you are VERY sure – another kick, and I lay down in the living room and TOLD him to call 911.)

Uneventful ride to local hospital (feeling like idiot already).

Absolutely horrible and boring day in ER being screamed at by an ER nurse who didn’t want me out of bed (long story – ignore – EVERYONE else was wonderful).

They take blood (3 sets of cardiac enzymes which tell them, over a long period, whether you have HAD a heart attack). Cardiologist who visits insists my symptoms go with a 90-95% blockage. Scares the heck out of me. They keep me overnight, send me from this hospital in NJ to PA one by ambulance in the morning, DO a cardiac catheterization – and RELEASE me because there is a ‘lesion’ but it doesn’t meet the guidelines for stenting (70% blockage). Surgeon does a flow test around it – blood flowing. Cardiac enzymes NEGATIVE.

Next day (Wed.), MY cardiologist goes over the results, tells me surgeon has not found anything stentable.

I PREPARE TO FIND A DIFFERENT REASON FOR THE PAIN, SINCE THE CARDIOLOGISTS HAVE ‘CLEARED ME.’ If you’ve seen my recent posts, the best candidate seemed to be an esophageal spasm. My assumption was that the months of coughing which had recently stopped had left things tetchy and easily triggered. The next morning, I dutifully call my primary doctor’s office, feeling like an idiot. They fit me in at 10. I drive myself.

I get there. BEFORE discussing my question with me (how do I figure out what this CERTIFIED NON-CARDIAC PAIN means and how to fix it), she has the nurse do an EKG, CALLS the paramedics immediately because of ‘changes’ happening right then during the EKG, and I end up in the SAME ER, and the whole process – boredom, cardiac bloodwork  – REPEATS. Cardiologist insists, keeps me overnight and does a stress test the next day – and he says he sees ‘something worrisome.’ I DON’T believe him, think he’s making a big deal out of my small reported comment of some chest pain FROM THE NUCLEAR CHEMICALS. Really, it was NOT a big deal. I want out.

Another overnight observation, and trip by ambulance to PA for a catheterization. This time, because there has been another chest pain event, and there are changes in the EKG from the stress test, the surgeon stents that lesion he’d seen before.

They stupidly tell me that IF the catheterization doesn’t stop the pain, they will be SURE it is non-cardiac, and I will be free to leave the hospital and go do what I was pursuing when I landed in the ER the SECOND time: a non-cardiac reason for the chest pain (about half of chest pain IS non-cardiac – I actually had a consult with a GI doctor who agrees an esophageal spasm is a possible explanation – triggered by cold food).

Imagine how pissed I am the NEXT morning when the mule kicks my chest and THEY WON’T LET ME LEAVE. This is Friday. They can’t force me, of course, so they overwhelm me with talk (I’m exhausted from days of this and hospitals and too many people and NO energy to start with – thank God husband was there and more coherent than me). I agree to let them look into it more. The next morning a different surgeon comes in, looks in more detail at the films ALREADY taken at the first two catheterizations and first stent (I’m a conundrum to them and they’re getting VERY concerned), DOESN’T come talk to me in person (it’s a Saturday – and he sends the cardiologist, another of the overwhelming talk-too-much knowitalls), and he somehow persuades husband and me that I need ANOTHER catheterization (third), that they are pretty sure they know what’s going on, that it NEEDS fixing. He also persuade me to wait for Monday staying flat in bed so the procedure won’t be an emergency weekend one.

It was a horrible weekend. For me. I’m pretty sure I was a hyper-controlled super-stressed trying-to-be-polite sure-I-was-right-and-they-were-wrong-again pain. Bedpans and being interrupted every 10 seconds and ‘cardiac’ tasteless diet will do that to an introvert, especially since we’re now at the two-week mark of this nonsense.

Finally, Monday the second surgeon, knowing I was refusing to go in until I had talked to him, stopped by (I haven’t eaten or had water since midnight and it’s past 11 am), came in, gave me a short and DATA-FILLED explanation, SAID personally (I think) he KNEW what the problem was. And I agree, if nothing more than to get out of there!

Why? Because the other alternative is to leave against medical advice – and I CAN’T DO THAT TO MY POOR HUSBAND. No matter HOW pissed I am, they may be right, and husband should not have to pay for my fit of pique, etc., etc.

They finally take me in for the procedure around 5PM. Cruel.

Surgeon talks to husband after procedure – he not only fixed the very complicated bifurcation lesion he had seen on the films, but found and fixed a 95% blockage lower on the same artery which was actually closer to the region the stress test had indicated was a problem, and which is an odd feature of my anatomy variation. This part is a little fuzzy, because husband thought he told me the details – he may have – but I was still under hypnotics and have odd and possibly false memories of some of it.

So I’m alive. The blockage which probably would have caused an actual heart attack at an inconvenient time has been stented. I have three stents, and the bifurcation got a balloon angioplasty in the other branch, because you can’t stent both branches, and I am on all the meds I didn’t want to even consider because of potential side effects for CFS folk.

Some aftermath, still iffy

The next morning, just for the heck of it, I blow the gasket in the groin, go through unbelievable pain (more than the mule kick – and lasts much longer!) while a burly male and female nurse ‘reduce’ it, and I spend ANOTHER lovely day in the hospital repeating the entire hole-closing procedure (a rate complication, they assure me).

We finally go home on Wed. (two days ago), after the most horribly protracted release process I could have imagined, with a bag of the new pills I have agreed to take until I see the cardiologist for the hospital followup visit I’m supposed to make within the week.

You cannot imagine – and I can’t describe – emotions and exhaustion.

That Wed. night, when I can’t get to sleep, I do a lot of thinking, internet research, and processing of implications. Rather incoherently, but I have to make at least a bit of sense of it.

Thursday morning I dutifully call in to make the cardiologist (mine) followup appointment, asking them to call me back in the afternoon and give me one, if possible, for Monday or Tuesday after the weekend (so I have a chance to rest, recover, and possibly become coherent again).

They drag me in that afternoon. Husband graciously cancels his appointment at the exact same time to take me. I really shouldn’t be driving. Damn. I thought I was going to have a break.

The followup cardiologist visit – too soon?

  • This is where we sorted some of the above stuff out. It was probably good that the bits and pieces were still clear, and necessary for husband to be there.
  • The odd sequence of THREE catheterizations, stress test results, EKGs both with and without problems, ending in the hardware I now own for life, is worked out. My cardiologist is amazed I’m coherent and functional (short periods between naps – I can work this), happy to explain ANYTHING I ask, amazed I’m willing to take their meds, agreeing I am special (that was funny) and that I need to be treated as such (here ‘special’ means ‘different from most other people because of ANATOMY and the CFS,’ but I still liked getting her to say it – whadda you want? I’m human).
  • The anatomy is special enough that it literally made it hard to figure out exactly what was going on. I am grateful that my big mouth didn’t cause them to give up on me – I assume I also worried the heck out of them. I am pretty sure, from her demeanor, she was prepared for anything when I came in.
  • Doing the research and thinking I did the night before was CRUCIAL for putting me in the right mental place to deal with her, the whole ‘story,’ anger, etc., etc., etc. I’m still amazed at that one myself. Though, remember, I’m still alive. All bets would have been off otherwise.
  • Because I’m special, the cardiac rehab will be special. And she is fully prepared to have to do a lot of work on meds if necessary. And isn’t demanding I give up my necessary CFS pain meds (which I finally got back to taking, defiantly, the last day in the hospital). There will be work on those – from a cooperative place.

So what next?

Anyone who cares is now up to date.

I’m exhausted, taking my meds, keeping VERY extensive journals of ALL details – there will be many days of this so I neither exaggerate nor minimize problems.

What do I want?

To get back to a place, mentally, where I can write fiction. Today has not been that place, and the aftereffects recorded in the journal are already at 3000 words, just for these three days so far. The crash is already ferocious; I don’t know how long it will last or how bad it will get, but am not sanguine about what this has done to me.

(Buy the first book if you haven’t and the Look Inside satisfies you in any way.)

I want to update anyone who cares – and then do the smallest amount of focusing on illness/disease/being a cardiac patient when I was no such thing less than a month ago – as possible. Consider this it. Be prepared for at least a couple of weeks of rather minimum interaction from me – not personal, as I love you all and wouldn’t have put myself through this post if I didn’t think it was important in some small way to get most of the chronology in writing and a first cut at accuracy.


I WANT ALL OF YOU TO LISTEN TO THE LESSON:

You MUST rule out cardiac causes of heart pain properly, because my cardiologist said I did EVERYTHING right (one of the reasons she agreed I’m special) and most people don’t, and many don’t make it (I didn’t tell her the one little bit of not going to the ER on Superbowl Sunday night, and going to bed – I am acutely conscious that night might have been my last – that 95% blockage bit).

Note the cardiac enzymes – done several times – never showed a heart attack – I never had it.


I’m wiped and going to try Next Nap.

Stay well. Take care of yourselves. Drop a comment. My online community is as real to me as the RL one. I will take up my responsibilities in it as soon as I possibly can.

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.

Real Fiction: How to develop empathy

Girl holding heart made of lights at night. Text: Use Real Fiction (trademark) to develop empathin vicariously. Alicia Butcher Ehrhardt

EXPERIENCE MANY LIVES VICARIOUSLY – BY READING

Let’s start somewhere

NOTE: None of what I’m about to say is meant to ask for help or pity, and certainly not for special privileges. Just understanding. JUST. And, among those whose lives isn’t constrained, both happiness for what they have, and a little of that empathy for those who don’t have it.

Even though political events have made this development more urgent, I’m not going there: better writers than I are doing that right now.

I’m discussing the part of empathy associated with illness, chronic illness

When friends seem surprised that I’m still sick, I want to respond as a character in my novel, Pride’s Children: PURGATORY does:

“Has the word ‘chronic’ been marked in dictionaries as ‘Archaic’?”

They don’t ask this question of people who have ‘real’ illnesses such as Lupus or MS or Rheumatoid Arthritis, do they? If someone now lives with HIV, friends usually understand that there is no cure, and remission is bought by a DAILY regimen of pills under a doctor’s care.

They understand that many mental illnesses are chronic, and also managed with a drug regime – every TV viewer has seen the TV writer’s trope: a violent person who is turns out is to be pitied because he has a mental illness, and is ‘off his meds.’

Invisible illness – can’t see it, must be fake

But if you have one of the invisible illnesses, ME/CFS or FM or Gulf War Syndrome, that are not understood because they have been disbelieved by medical ‘professionals’ in general, you are expected to have made a miraculous and convenient recovery using supplements, alternative medicine, acupuncture, specialists, exercise, diet, or yoga, and are now back to full health because, the groups’ sick in-joke, “You don’t look sick.”

‘Chronic’ thus means ‘inconvenient’ to those inquiring, “Are you still sick?”

It doesn’t mean, ‘needs continuing care for symptoms that wax and wane and never go away.’ It doesn’t mean, to the friends, ‘let’s not forget her because she doesn’t have the energy to make new friends.’

And it doesn’t mean, ‘Advocate for her, because she doesn’t have the energy to do it for herself.’

Then something happens to THEM

And it is too late; they get a crash course in empathy – or not.

Until the ill one is their child, their spouse, or their parent or grandparent, and they have to provide or arrange for whatever care is necessary, ‘chronic’ is just plain inconvenient, unless it is also ‘malingering,’ ‘gold-bricking,’ ‘laziness (she’d get better if she just got out and exercised),’ or ‘playing the system so she doesn’t have to work.’

And then, unfortunately, once they understand, they are too busy to be useful – because they are taking care of said loved one, and the now know how much energy it takes to do that, and have little left for the advocacy that is so desperately needed. Catch-22.

Which brings me to the point of this essay:

There have to be other ways of developing empathy than suffering chronic illnesses in your own flesh.

One of the best – and highly underutilized – is fiction.

But not the special books for children – barely disguised non-fiction

‘Little Tommy has Cancer’ or ‘What Does Ostomy Mean’ or ‘You have diabetes – now what?’ – designed, usually, to help the child, school, teacher, or close friend understand what is going on with the child.

Not usually meant for the world in general, such a book might have a cover picture of a kid in a wheelchair, or with an oxygen supply device, or getting a shot. These books are necessary for the ‘different’ ones, the same as the Barbie with crutches is meant for the different child to see herself (as both handicapped AND held to impossible fashion standards).

They are less frequently bought for the kids who don’t have the disability, disease, or impairment – but are there in the library if necessary. These aren’t the fiction I mean, because they’re barely fiction.

Nor books (or movies) intended to promote suicide as noble

Those are just disgusting: if someone becomes broken their best option is to find a way to tidy themselves out of this world so as not to inconvenience their ‘loved ones.’

Ask any real family affected by suicide whether they feel loved by it.

Million Dollar Baby, The Ocean Within, Me Before You – it has become a trope.

I reserve judgment in the case of ‘intractable pain or depression’ – and I could not possibly judge the person who chooses this exit if it is truly intractable – though I often hope it means they have been unsuccessful at finding help. It is not a matter for fiction, because fiction always conveniently leaves out the real details. Horribly depressed and wracked by pain people can and do have ‘quality of life’ in many cases – when their need to stay alive for those same loved ones is their prime imperative. YMMV.

Alternate preventive empathy development made easy via REAL FICTION

In Real Fiction (TM) of the empathy-developing variety, characters happen to also have a disability, illness, or difference – but it isn’t the focus of the story, while always being there.

Real fiction offers the reader a way to understand without being personally overwhelmed.

The writer can go into the thoughts of the character to show inner strength balancing outer pain.

The reader is thus safe to explore the consequences and conditions set up by the writer, to understand more, to literally be a voyeur – or in modern parlance to inhabit a virtual reality – that allows the reader to experience the life of a disabled person from the inside.

This alternate reality is temporary, and can be left or abandoned if it becomes too much for the reader to bear.

Fiction allows the small details that are important to the character to emerge, rather than be lectured about.

A great example is the book (and movie) Ordinary People, by Judith Guest. A family tries to understand why their son attempted suicide – and the family dynamics digs down into the real cause.

Pride’s Children is designed to be REAL FICTION

One of the main characters is a former physician who has CFS (ME/CFS), and is no longer able to practice medicine (which requires energy and brainpower), but has retrained herself as a novelist.

The story shows the development of her change in the area of personal worthiness for her goals, triggered by an accidental meeting with a charismatic actor which then affects her whole life.

Is she correct in the assumptions she’s taken on as to her own value as a PWC (a person with CFS)? Will chronic illness limit the rest of her life? Can she hope for and desire what ‘normal’ people are allowed by society to want?

At least you don’t have to get sick to find out. You will just have to read.

And be patient. It’s taking the writer a while to finish the story.

What’s your favorite vicariously-lived life? Who would you have liked to really be?

The MOST important thing they don’t tell indie writers

Snowy forest night, black sky above. Test: Award winner! Bestseller! Get reader's heartbeat up! Alicia Butcher EhrhardtSOME INDIE AUTHORS ARE GOOD ENOUGH FROM THE FIRST BOOK

Traditional publishing believes it: they LIKE to take a beginner’s book, push it like crazy as ‘the next big thing,’ and then, if it takes, take credit for the success. If it doesn’t, most of the time (as that first book can take a number of years to create), we get articles in the NY Times and The New Yorker by disillusioned young MFA-program writers who thought ONE book was their ticket to live in Manhattan forever.

Hindsight is 20/20. You learn things later you wish you had learned sooner. And they can hurt you. Significantly.

And it’s possible this isn’t important for many beginning self-published writers, so no one has thought to mention it as specifically important.

Instant gratification is a plague on the modern world.

And the Dunning–Kruger effect is rampant. The link will give you a precis of the science, but the short version is that about the bottom 10% of people in competence in a subject think they know it all. Reread that sentence because Washington is full of it right now. The least competent think they are the MOST competent.

Maybe it’s a survival thing – if you thought you knew how to hunt the mammoth, even though your hunting skills were terrible, the mistaken belief allowed you to leap in there with your spear, and it was successful just enough of the time that the gene didn’t die out. Once in a while. And possibly is the origin of the phrases ‘fools rush in’ or ‘beginner’s luck.’ But I digress.

How does this apply to new indie authors?

Here it is: the thing I wish I’d known about – and had paid attention to: your book launch is critical, because in the first month you get a bit of free publicity (new books) from Amazon, and the DATE of that launch determines its eligibility for awards, and you need to know if your book is good enough and apply for those awards at the right time.

NOBODY IS OUT THERE SEARCHING THE NEW INDIE BOOKS TO SEE IF THEY ARE ANY GOOD, AND GIVING THEM AWARDS.

I published late in 2015. That made me ineligible for most 2015 awards (their deadlines had passed), and ineligible for 2016 awards because Pride’s Children: PURGATORY was published in 2015.

I didn’t need to publish then; I could have waited, would have waited if it I’d known the consequences. Early 2016 would have lost me the Christmas 2015 season (during which I sold a few books, very few), and I was so focused on getting that thing out there, that I didn’t even think about awards.

TO GET AWARDS, YOU HAVE TO SUBMIT TO AWARD COMMITTEES – AND PAY AN ENTRY FEE.

The fees cover the administrative costs of most awards, and the prizes (part of which may be subsidized by some foundation). They are set just high enough to discourage most new authors from frivolous submissions. And if you’re determined that the book should pay its own way, are an expense that may be hard to justify.

NOBODY will know that you applied for an award. Other than the financial one – which could be significant – there are no downsides to applying. IF those committees are honest, this might be your only chance to be considered on pure merit (their subjective definition, of course).

And the whole process runs up against the other part of the D-K effect, that the most competent people are  hesitant to say they are competent in a subject – because they actually know how much they don’t know. Many top scientists are modest and humble people.

There is a surfeit of Arrogance in the world.

Self-promotion is something most indies have to work at, and we’re all tired of the relentless self-promotion – Buy my book! Buy My Book! BUY MY BOOK! – of the modern Twitter feed.

But once in a while, a new – or even a first – indie book is a carefully-drafted, polished tome that would have merited consideration by an award committee – but didn’t know the basic facts of submission, because, even though they spent years reading the forums, blogs, and boards before publishing, the FACTS above in bold were never mentioned.

I would have liked to try.

‘Bestseller’ or ‘Bestselling author’ is USEFUL in marketing. And that should be achieved by sales, which most indie newbies won’t have. But ‘Winner of the _____ Award’ IF the award is a real one, and a significant one, is also very good for a book.

I would have liked to know it could be important. I screwed up.

If that’s arrogance and ego, so be it. The awards committees would have let me down, the money could have been wasted.

But the simple facts would have been nice to have, so I’m putting them out here on the off chance that someone else in the newbie self-publisher category will see this, and at least know to look up the awards and their submission guidelines and dates.

And that’s my screed for today. Are there hidden gems, condemned by the very lack of knowledge of their indie authors to remain hidden? What do you think?

“I coulda been a contenda,”

Marlon Brando, On the Waterfront.

Or so one likes to believe.


 

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?

I knew what to do a year ago

SKILLS NOT USED GET RUSTY

I spent my working time today gathering everything I have in the way of text for the short story, a prequel to Pride’s Children, that I’m getting ready to publish on Amazon.

And panicking.

When I did the ebook formatting for PC: PURGATORY, I spent so much time tweaking Scrivener’s Compile function, to get everything to look just right, that I worried I’d never get the details out of my head.

And yet here, a bit over a year later, I can’t remember ANY of it.

Somehow, wisely, I left breadcrumbs for myself

Because it is something I send to people who request it (after they read my post on structure), I took the trouble to clean up the Novel With Parts template that I use, which is just Scrivener’s template of the same name, but with many areas prefilled or suggested.

And with the same Compile setup that I used to produce the novel’s epub file.

But it is not a short story template (reminder to self: produce one), and a 167K novel needs more parts and sections than a 1.5k short story.

But it has been extraordinarily difficult to remember why those parts were there, how I figured out the headers and footers and front and back matter, and making the decisions to delete what I don’t need.

I am nervous because I’ve never published a short story on Amazon

and it is very short.

Even with some fill-in bits, it is very short. Even if I tell people right up front that it’s short, I have this feeling of impostor syndrome.

And yet, there are no words I would add to it. It is the right length for what it tells, and a critical bit to understand Andrew. It took months to get right, to make spare, to give both a flavor of his mind and an account of an important happening which has changed him.

It’s free on Wattpad and on my blog, but some people haven’t read it here (please do so if you like). And I will have the temerity to set its price at 0.99, which, by coincidence, is the amount I’m charging today for the whole of Pride’s Children: PURGATORY.

Pricing messes with my mind. Since I also do it differently from many indies, I can’t follow easy guidelines. I want the story on Amazon for anyone who would like their own copy in a Kindle file with a cover. This authoring thing is weird.

I’ll figure it out. The next short story will be easier. It isn’t brain surgery. It’s just a little story.


Too Late: coming soon. If it hadn’t been for the shenanigans in Washington, I’d be finished.

Will I ever feel as if I know what I’m doing?

Sometimes there’s a reason you can’t write

A road going off into the snow. Text: Who suffers? That's whose responsibility is it. Alicia Butcher Ehrhardt

COUNTING ON YOUR IMMUNE SYSTEM?

Just because you’re sick doesn’t mean you can’t get sicker

It has been an extraordinary two-month+ period, and I’m only now realizing that it was kind of not my fault. But it also was.

I was seriously worried that my ability to continue to function was deteriorating further. Since I have very little of it, losing more is a continuing concern.

I fight to retain mobility, and still hope, if we move to a place with the right facilities, to be able to regain some. I need access to a gym and a pool, and a safe indoor space to practice walking.

I hope, if we move, and reduce the list of things that go wrong with a house, I will have more time and energy for myself, to write with.

But all of that is useless if the brain has decided to go down another notch.

The past ten years have been mostly on an even keel

I got things, I felt sick for a day, the ‘thing’ went away: my always-on immune system seemed to fight it off. Other people got things like colds – I felt as if I was going to, but most of the time didn’t.

I got cocky.

And then ‘level’ and ‘normal for me even with CFS’ changed – and changed drastically

I’ve been sick, sick enough for it to impair my cognition, for most of the past ten weeks – but didn’t realize it.

My first written notes about the problem pin it to the beginning of November 2016, when I felt ill for a day in a pattern I’m used to, my over-active immune system seemed to deal with the problem, as I have come to  expect, but I developed a cough. I assumed I’d fought of another virus, but was experiencing its aftermath anyway.

Most people who have a post-viral cough will fight it off eventually, because their immune system keeps working away at it. This is where ‘walking pneumonia’ comes from: is it actually a form of pneumonia the body fights off well enough for the person not to need to be hospitalized for the pneumonia. It is serious; the person will feel tireder than normal, not quite right – but most people will fight it off.

For a few of those people, however, the continued coughing, and the strain the coughing and the viral infection put on the system will make the person vulnerable to catching something on top of the original.

So, first I had the post-viral cough. It went on a month – I visited the doctor, and she listened carefully, told me the lungs were perfectly clear, and that these things sometimes went a long time (she’d had it last herself). I was extra-tired, and the visit itself came from energy I was trying to protect. “Call if it doesn’t go away after the holidays,” she said.

What went wrong/wronger?

Another month passed. I was going to call her at the end of the first week of the new year (last week), when I realized a new symptom had appeared: wheezing, always a bad sign. I called the next day, she couldn’t see me, I was told to go to urgent care. Urgent care did a chest Xray to rule out pneumonia or something worse (like lung cancer, which can present as a persistent cough), diagnosed bronchitis (very uncomfortable, I tell you), and sent me home with a five-day course of Azithromycin. I took the last pill this morning.

It should have been enough.

But: During the week after New Year’s, husband developed a nasty cold – and cough. He assumed he’d gotten what I had, and, here’s the kicker, didn’t do anything special to avoid passing it on to me. To be fair, it was a reasonable assumption.

We should have paid far more attention: the cough he had was nothing like the one I had.

The fear of further deterioration

I haven’t been able to write consistently for weeks. Even the post-viral cough was enough strain on my system that it took that little bit of functionality and the little bit of good time I can usually count one every day.

It wasn’t just life (as I may have written). Yes, there was a lot going on with the last chick leaving the nest, and the holidays. I would have expected, did expect, not to get a lot of writing done under the year-end conditions. But, looking back, this was worse: almost no writing – even of blog posts – was going on. I’ve stated before I have 30-40 posts started – and I couldn’t complete one. Apparently, finishing up a post and publishing it takes a little of that ‘good time’ for the final effort to add a few headlines, to make sure the whole is coherent and has a point. I don’t just stop at some point: I clean up, reread, get the ducks in a row, edit, polish, check references, add links… It’s not hard on a normal day, but it does take a bit of that precious energy.

Every disabled person, every chronically ill person, fears one thing: getting worse.

Healthy people don’t constantly think about becoming unhealthy; they even sometimes feel invulnerable (teenagers, especially!). But, for the rest of us, our body has already failed to heal to full functionality, so we know we are vulnerable. Too vulnerable.

The first instinct when things seem worse is to hope it is temporary, and it will go away. If there is a new symptom, I watch to see if it will resolve, or if I can find a workaround.

But I have never in the past worried that I should be extra-vigilant when in that state, if indeed it is a state – and not the permanent downward step I fear.

I have learned a new and painful lesson: I am able to get sick/sicker. I am not immune to catching other things if I’m already under strain. My immune system, compromised as it is, can fail even more.

And there are some nasty bugs out there – and they don’t care whose body they hitchhike on.

My brain came back this morning

Somewhat. A bit. But at least coherent in the way I am used to (so, closer to my ‘normal with CFS’).

And the first thing I’ve done is to write all this down, to record it for my own edification (and possibly yours).

The big fail – which I hope not to repeat – was husband assuming he had what I had, and not taking the normal precautions against spreading whatever he was fighting off; compounded by me not insisting. When he’s sick, he is not thinking of anything but being miserable (it doesn’t happen that often – lucky stiff).

He handed me things, coughed in my direction, left tissues everywhere.

But it’s all really my fault (it always is): I let him hand me things, picked up tissues from the floor and emptied wastebaskets, didn’t insist he take precautions (because mostly that’s the way we’ve always operated).

I am the one who is vulnerable – I am the one who is going to have to remember this lesson, and enforce best practices from now on: if someone is sick, stay away, wash hands frequently, insist they pick up their own debris, and do everything I can to protect myself.

Because I am the one who can’t write if she doesn’t.

Hope this saves someone else from worse. What say you?

How to fix post holiday blues

Bleak winter landscape with one tree. Text: Trouble starting a new year is normal, Alicia Butcher EhrhardtUNIQUE TO DO LIST ITEMS DRIVE ME CRAZY

It’s surprisingly hard to get back to some kind of routine after holidays and a year ending – so many one-of-a-kind items – from tax paperwork to getting parking stickers for the next term to all those doctor’s appointments which have been put off to seeing friends in town for only a few days.

I am ready for all that to be over, and get back to routine, any kind of routine. Even snow – which is predicted for this weekend.

I should be writing up a storm – instead of chasing down the meter reading on the solar panels.

Anyone else in the same slump?

PWCs (people with CFS) handle change very badly

We’re bad enough with things we do routinely, such as laying out today’s pills, and watering the plants.

But each new thing attempted requires the use of a scarce resource: good time (i.e., when the brain is on).

I normally reserve that time for writing, and have ‘FIGHT for the RIGHT to WRITE‘ where I can see it easily.

But this time of year – between the end of one and the slipping-into-routine beginning of the next year – is a constant barrage of exceptions.

EVERYTHING claws its way to the top of the priority list

We have a solar system. On the first of the month I get an email which reminds me to send in the meter reading so they can credit us with SRECs (solar credits – don’t ask me to stop and look up the acronym!) so that we will eventually get a small check for any excess energy we pour back into the grid. There was a $500 extra cost when we were required to pay for and install a new meter (the government wouldn’t take our reading of the old one) if we wanted it to wirelessly send the solar company the reading – and of course we said no thanks.

The idea is that, once a month on being reminded of the need to send this information, I will go down to the basement, read the meter, and, while down there, perform the cleaning of the system that involves pouring bleach into the pipes and the pump, which will otherwise grow algae.

Except that I’m now having to force myself to at least go down to the basement once a day, because moving is difficult, the heart rate goes up, and my chest hurts if I do stairs. And yes, I have an appointment to visit a cardiologist for reassurance/whatever already scheduled.

So it had to be done, now – and I cheated. I just got the number and emailed it in and didn’t do the maintenance part. Which means half of the task – and a trip to the basement out of no energy – is still pending.

I am probably not unique

Everyone has these things on their lists; everyone has more stuff to do at the end of the year and beginning of another.

But I’m drowning, my assistant hasn’t made it for a week (she’s sick, on top of the holidays), and there is no end in sight.

Why am I telling you any of this?

Because I normally blog – and I have 30-40 half done posts, none of which I seem to be able to finish.

Not being able to finish a blog post is new to me, and I’m scratching my head. I understand how writing doesn’t get done – I can’t focus if I know I’m going to be interrupted in 15 minutes – but I hadn’t realized how even blogging needs some coherence.

I’ve been worried about obvious mental deterioration, and then I realized this morning that I’m probably not unique, but I am getting older, and changes in habitation location are coming, as well as a whole slew of problems related to that, and that the world probably won’t come to an end if I don’t have my handicapped parking space set up before this Sunday (another task which took time this morning) but that it was wise of me to try calling on a working day (they assure me it’s in the works, but they were just off for eleven days).

I’m working on it

That’s my motto for everything.

I will get to it, whatever ‘it’ is. Eventually.

Routine will return.

I will be able to finish something (I’m almost ready to hit ‘post’).

And now I go to find the proposal from 2004 from the HVAC people that shows we paid for – and didn’t receive – a duct cleaning back then. Because I promised the lady I’d send it today. Because THEY shred their records older than ten years – and I never throw anything out.

Because $300 is not peanuts.

Oh, well.

Happy New Year to all of my bemused readers (bemused at this odd post, not bemused themselves).

Stay warm (or cool, if you’re in the southern hemisphere). Breathe. Pray for the crazy lady.

Peace out.

You, too?

 

What to write when your house is under attack

Squirrel on snow holding red berry. Test Life hands you berries? Make berry chiffon pie. Alicia Butcher EhrhardtSOMETIMES YOU HAVE FEW CHOICES – DO YOUR BEST

Those of you who know how noise sensitive I am will realize this is a bit of a torment – I’m stuck in my own home with two guys tramping around with hoses, air guns, a powerful vacuum, and one of them is a trainee who must be shouted at.

We are having our ducts cleaned.

It hasn’t been done since the house was built in 1981.

I must stay because where the heck would I go? And because I must be the one who manages Gizzy, our chinchilla who hates noise more than I do.

I am, of course, sitting here with my noise protection head-gear; for some of the noises, it is barely enough. Four hours (est.) of this is going to feel great – it presses my head to do a good sound blocking job, but, hey, it’s better than the other options. I took the ibuprofen for the headache already: what a coincidence, you can take more in four hours!

 Who knew that the inside of heating ducts got dusty?

Isn’t that what the filters are for?

Me, I grew up in a country without central air (Mexico) because it never got so hot that you needed air-conditioning, or so cold that the fireplace wouldn’t handle it those few nights a year when outside was chilly.

So, no ducts.

When I lived in Seattle, radiators. No ducts.

In grad school in Madison, Wisconsin – radiators.

First house was in Maryland – and even though we had central air and heating, we only had that house three years, and no changes were necessary. So we didn’t learn then.

Then, this house – and how was I supposed to know you had to hire a very short person to climb inside your ducts to clean them? Periodically? Job security for elves?

Last time – eleven years ago – when they replaced the HVAC, we actually PAID to have the ducts cleaned. But somehow it slipped our mind, and we never had them actually come do the job. (They’re looking into giving us our money back!)

Perfect time to write a blog post of the light-weight variety

Honestly, most of you who need to know this probably already do.

When people mention TV shows of their childhood, they are often surprised that I never saw them.

When people mention their English teachers being good or terrible in high school, college, creative writing or MFA program (or even the esoteric PhD in Literature), I realize I’ve never had but one English teacher, and that in a course I apparently didn’t need to take (after I’ve taken it, I find this out. No matter: I actually enjoyed a teacher who pranced around in front of the class spouting Shakespeare – because I’d never had one).

So, of course, I don’t know about duct cleaning.

I made the mistake of asking

Well, apparently most people don’t ask (maybe they just get out of there).

The nice young man-in-charge from the plumbing company must not get enough chances to expound, because we got a long spiel on the details of the process (which requires making holes in places with a drill). Enthusiastic lad.

All I wanted to know was the order of operations.

It turns out they basically don’t care. After doing certain things, they will go through each room and clean our the air supply vents. What order they do bedrooms in is not important.

So I will have them clean my office ducts, and then, while they’re doing something to the attic bedroom, I’ll scoot Gizzy in here, where she will promptly hide inside my upholstered armchair (she hates light, too), and go to sleep. Or into a state of shock. It’s hard to tell.

What will I be doing?

After delighting you with trivia like the above, I will play sudoku, surf the web, and generally waste the whole time.

Because there isn’t a chance in h-e-double hockey sticks that my brain will be able to do anything like writing fiction.

Or paperwork that I’ve been avoiding.

Or (coherent) phone calls. And the other kind, really, don’t solve anything.

And, even if I could walk properly, it’s too cold to go out for a long hike. Like to the next county. And I’d need food. And a nap. And the, you know, facilities.

Plus there are still people out there blowing leaves around, and outside isn’t that nice and quiet, either.

That’s the best you can do?

Pretty much.

I could color, but I tried it once and I didn’t like it.

And I could embroider the sections in cross-stitch on my tapestry which I can’t do while watching TV because the room is too dark.

Or I could eat, from stress, continuously for the remainder of the time. Also maybe counterproductive.

Something actually useful?

Or I can think a bit about how you do book marketing and promotion when you’re as slow as I am, and the next book will take years, maybe (let’s sincerely hope not, but it’s been started since March 2015, and I’m already into its second chapter. Woo hoo! (In my defense, the first many months were spent in planning in excruciating detail.)).

Not much you can do while occupying the inside of a jet-engine. Ask the birds.

It will be over at some time in the afternoon

So don’t cry for me (although pity gratefully accepted). This is just, like waiting for the dentist for hours before he deigns to drill into your teeth, part of the torture of civilized life – and I am truly grateful for the opportunity to do nothing while other people work to get my ducts sparkling clean, considering what the rest of the world has to put up with.

I really hope I don’t look back to this, and realize this was an oasis of leisure.

After all, I don’t expect myself to get anything done today, and I usually pester myself continuously about getting something written, because, like, I’m wasting my life.

Bang. Bang. BANG!

Enjoy your quiet.

Now, in respect for others, I will gracefully listen to your own complaints. Leave one in my comments!


***** 0.99 Sale still going on until New Year’s Day *****

Did you know you can give people ebooks for presents by just buying the ebook at Amazon and supplying their email address? They don’t even have to have an account. Amazon handles the rest – and you can even put in a message for the giftee. US link here.

Amazon has a FREE app to read Kindle files for almost every device you could read on. All?

I personally wouldn’t want to read 167K books on a mobile, but there’s no accounting for taste.

All other countries who can purchase ebooks from the ‘Zon: type in Pride’s Children: PURGATORY in your very own Amazon.

*****  *****


I just love the editor at this online magazine. She publishes any drivel I care to supply!

Endless self promotion due to the fact that you need to see things SEVEN times before you buy.

Thanks to Stencil for the squirrel. Gizzy has the same kind of tail. Bushy.

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

Choose reading carefully for maximum satisfaction

A runner with the words STOP The reader is the starting pointARE WE GOING TO HAVE A READER VS. WRITER PROBLEM?

General warnings:

If you don’t like epic mainstream commercial fiction (i.e., ‘big books’), you should think a bit before you start, or you might have to make some adjustments along the way. I’m not going to tell you what you can read and can’t read (note carefully this is not on the book’s site, which should contain nothing but praise and happy customers’ reactions).

If you don’t like the epigraphs at the beginning of the chapters in Pride’s Children, you can skip them. All of them, the long ones, only the ones that are Kary’s writing, or the biblical ones – whatever you want to skip. I won’t stop you. Epigraphs in general are sort of pretentious, aren’t they?

At the same time, feel free to ignore the Chapter titles – they probably don’t add anything to your reading, and are just the author pretending to be refined. Too mysterious by half, just decoration. Skip.

If you don’t like prologues, you can skip mine. You will miss a few tiny pieces of critical information tucked into a single-page, 145 word piece, but it’s definitely your choice if you don’t like prologues. Besides, some of that won’t even be relevant until the second or third book of the trilogy, and you’re not going to remember it anyway. Skip without a thought.

Character warnings:

If you don’t like third-person multiple point of view, we’re going to have a major problem, because that’s the choice I’ve made for how the story is told, and it isn’t easy to change, though you might just tell yourself it’s omniscient pov done poorly, and live with it. Three first-person povs, rotating, seemed more awkward, so I chose three third-person ones.

There may be a problem with too many characters. I stopped counting after about 50. Just ignore the minor ones and you’ll get most of the story. If they’re important, they’ll come up again. If not, why bother remembering them? If you don’t want to read about disability in your characters, you might want to skip the whole thing anyway, and look for books with young, hot, healthy characters – all of them.

Many people aren’t all that happy spending time with Bianca. Her scenes are clearly marked, so if you want, you can just skip those. You probably get plenty of her in the scenes by the other characters anyway.

Writing warnings:

Don’t like big paragraphs of mixed dialogue and interior monologue, some direct and the rest indirect? Feel free to pick up the dialogue bits (they’re marked with double quotes, single quotes when it’s remembered dialogue), and skip/skim the rest. Your choice. There are all kinds of annoying bits that foreshadow things that won’t happen for a long time, anyway.

Don’t like paragraphs of pure description of which you think there are too many? Skip ahead – don’t worry that there might be something buried in those descriptions that will add to the story. They’re probably window-dressing, the author showing off she knows many words for sky color.

After all, Pride’s Children: PURGATORY is a whopping 167,000 words, and they can’t possibly all be relevant to the story, and you usually skip the boring parts, so skip ahead freely, without a qualm.

Don’t pay too much attention to the language – it really is a little bit much, and it would have been much better if the author learned to ‘write simple.’ Maybe she will by the next book. If you bother to read that one. Skip the part about context.

Plotting warnings:

If you’re still going to be unhappy that he and she (not telling which she) don’t get together and have hot monkey sex sooner, feel free to skim until you find the parts you like to read. It won’t bother me anyway, since I won’t know unless you decide to write about it in a review, and then you don’t really have to put your name on the review, so it’s no biggie.

You can even tell everyone you didn’t like PURGATORY, and aren’t planning to read NETHERWORLD and whatever I decide to call the third book in the trilogy. Besides, trilogies are too long. Fine with me – I am happy for you to have your own tastes and opinions, and truly believe they are just as good as mine.

I’m not sure I can help at this point if some of this stuff seems confusing, there are too many characters, the story seems to keep getting disconnected, and many pieces just plain don’t make sense, though.

I wish you much happy reading with other books more to your taste if you don’t like mine.


Still want to read? Or should I have warned you before you already read?

Rhetorical questions in fiction: good or bad?

Healthy dessert with grapes, cherries, and granola, with the words: What do you think? 3 question marks. Good? Bad? and Alicia Butcher EhrhardtSHOULD YOU USE RHETORICAL QUESTIONS WHEN WRITING FICTION?

This was a shocker.

When working on Pride’s Children: NETHERWORLD, I came across a note:

Sue Coletta: don’t use rhetorical questions. They take you out of the story.

Like all other blanket prohibitions, this one is wrong.

But it sounded good. And I had stored it away for a reason, specifically to make sure I didn’t do something that took my readers out of my stories.

How many rhetorical questions are too many? One? Two? In how much ‘scene’?

I had just finished writing the first scene for one of my main characters, and it seemed a good time to 1) check to see if I had many rhetorical questions in it, and 2) to go back to Book 1, Pride’s Children: PURGATORY, and see if I had that problem there, too.

I startled myself: this main character, Kary, had TWENTY-SEVEN rhetorical questions in her new scene. Wow. Certainly too many.

So I check a different main character, Andrew, and found he had a couple. (My scenes have 800-1500 words in them, typically.)

I went back to Book 1 and found Kary had another huge number of rhetoricals in her last scene. Andrew, only had a few in his last scene in Book 1.

And I realized how different I had made these characters in how they talk to themselves – and I didn’t even know I’d done it!

One of my ‘go to’s on my Left Brain righT method is to ‘Become the character’ before attempting to write the character’s next scene. It includes going back and reading that character’s last previous scene, and possibly a few before that, to get into the character’s voice and mannerisms.

This turned out to have a vastly different style in something I prized, the interior life of the character – and I didn’t even do it on purpose.

Characters are different – duh!

I’m not sure whether I’m channeling or inventing these characters.

But it spooked me.

I don’t know when this happened, and yet there it was.

I just knew they were different, and I knew how they were different (from spending years living with them in my head and in my notes), and the characterizations came out by themselves.

I like things like this in my writing, but I always thought I did them deliberately.

About those twenty-seven rhetorical questions that Kary had? I couldn’t change a one.

Takeaway?

Sue’s admonition – Don’t ask rhetorical questions because they take you out of the story – needs to be changed.

To: ‘Don’t ask the READER rhetorical questions.’

Because it takes the READER out of the story.

It’s fine for the CHARACTER to ask herself questions without answers. How often? As often as she would do it if she were real.

Is she?

Dunno.

What is real?


Do you ask rhetorical questions?


Thanks, Sue. You made me think – and that’s always, uh, interesting.


If you find any of this intriguing, and/or want to see rhetorical questions in action, you can find Kary’s scenes in Pride’s Children at Amazon US, written by the same person who writes these posts. Note: the link leads to the reviews; the product page link is in the right sidebar. Don’t you like to see what other people think about a writer before considering buying?

PS I’m depending on word of mouth right now, as I can either write, it turns out, or market. Or you could go out and find a cure for CFS, so I can do both (might be a wee bit harder).

5W+H newspaper method gels writing beat

different wayI HAVE SIX FRIENDS THAT HELP ME WRITE

Every once in a while I get myself into a jam, and, though I think I have every thing I need in writing a piece of a scene, it fails to gel, I feel frustrated and tied in knots, and I keep going at it from all directions, starting and restarting the section without getting to a coherent flow.

I tried an old newspaper trick this morning.

Newspaper reporters have to make it fast and easy for a reader to engage with a story, get the basic information into the reader before she does the pre-computer equivalent of clicking on something else to read: giving up on one story, and finding either another one to read or moving on to the rest of her day.

Your English teacher probably taught you this, too (I didn’t have an English teacher, so maybe that’s why I came to this in a roundabout way).

It’s called 5W + H.

And it means, you recall, supplying the six pieces of information the reader needs to lodge the basics of the story in his head:

  • Who – people present or necessary to the story
  • Where – setting
  • What – is going on (the plot)
  • When – time, time frame, sequence
  • Why – are you telling this story? Why did they do it?
  • How – the plot reaches resolution, and the information is transferred securely into the reader’s head.

The order doesn’t really matter as long as, after a very brief period, the reader has enough to interest him to keep reading the details.

TV news people usually drag this out as long as possible, especially if there have been little advance hints all day (news at 11) – and now they have to supply the goods. They tease you along with the less interesting bits, finally supplying the actual meat of the story (which is often anticlimactic – I waited up past my bedtime for this?) after as many commercials as possible, when they could have ‘informed’ you the first time you heard about the story.

Writers can’t afford this – the reader won’t stick around.

For the writer of FICTION

The problem for a writer is when the dramatic pieces want to come first – the startling headline, the shocking news – but they won’t make sense without the more informational bits.

Readers have an empty gray-goo area in the brain, a formless void, when they approach a new story, and it has to be filled in quickly.

If you don’t reveal that this shocking dog’s death occurred, not in their neighborhood, but in Manila, they will 1) assume it’s local, and 2) be annoyed at you when they find out it’s not.

So the system is: shocker, fill in the absolutely necessary stuff to orient the reader, more shocking details.

But it’s not the reader’s job to avoid the confusion: it’s the writer’s job.

LEAD with the emotions

Life is boring – readers need vicarious experiences.

We are, as Lisa Kron says in Wired for Story, primed to absorb new information that we need.

Need is critical: grab readers by the emotions, and supply the details as quickly and efficiently as possible, and they will follow.

What I figured out was that I’m relatively good at doing these steps in a normal scene – hook, set the scene, supply story, leave cliffhanger of at least one question so the reader will read the next scene.

But not when I get tricky – for good story reasons – and try to cram a lot into the piece of scene.

Then I need to stop, make sure the 5W+H are provided asap, and choreograph the presentation of story information in the most effective way I can. Deliberately. As if I had a news desk editor with a lot of experience to satisfy, and the pickiest readers.

The contract with the reader

Lead the reader down the garden path, as it were, until we find the dead body.

If you can do this in a tricky case, it improves the facility for doing it in normal situations.

It comes down, after you’ve identified the 5W + H:

DON’T CONFUSE THE READER – FOR VERY LONG.

Just as soon as the reader starts to think all this is a bit too much, it GELS.

Because the critical information is all there.

And the reader is no longer confused, the dreaded info drop has been avoided, and the story is firmly lodged (one hopes) back in the reader’s brain.

The analytical side of my brain is very pleased with itself – the artistic side is chomping at the bit.

The details? You’ll eventually have to read Pride’s Children: NETHERWORLD to grade my performance, but I can tell you the bit is the beginning of the second scene; it involves four people and four different settings; there is a tiny necessary shift in the timeline; the formatting helps (Lord knows how I’m going to do this in the audiobook version); and, if I do it right, it will bring you right back into the story with very little ’splainin’ (think Ricky Ricardo and I Love Lucy: “Lucy! You got some ’splainin’ to do!”).

Trust me, the other way was long and boring.

What say you? I love discussion.


Thanks to Stencil for the ability to create images for posts.