Tag Archives: disaster

Heart Sisters is an amazing blog

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

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

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

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

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

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

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

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?

Adult drugs mess with your mind

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

NAVEL-GAZING CAN SAVE LIFE OR SANITY

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


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

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

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

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

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

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

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

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

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

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

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

And wondered why I was still a zombie

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

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

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

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

My solution: don’t take that crap

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

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

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

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

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

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

From my journal:

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

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

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

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

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

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

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

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

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

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

Talk about trepidation!

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

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

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

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

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

The day went along, the best day in ages

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

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

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

I had obviously made the right decision.

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

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

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

You see where this is going, right?

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

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

And the blood pressure spike HITS.

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

I take the emergency BP med (amlodipine).

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

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

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

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

So, what did you DO, Alicia Guadalupe?

Nothing.

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

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

I told him the whole stupid story.

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

He was calm, calmer than I would have been.

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

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

What do I do now?

Play by ear again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m thinking about it.

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

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

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

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

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

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

And there you have it.

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

Medical research and you – reading the literature

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

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

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

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

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

That does NOT mean I lose all choices.

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

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

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

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

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 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?

Do not allow Old Lady Medicine

Tunnel looking up at sky. Text: Don't accept old lady medicine. Your future is at stake. Alicia Butcher Ehrhardt.DOCTOR’S EXPECTATIONS DETERMINE YOUR MEDICAL CARE

Fight for your life and your chances

Husband hands me a magazine, the Health Check that our local hospital, Robert Wood Johnson at Hamilton (formerly Hamilton Hospital), sends out to everyone whose address they’ve ever received for any reason.

In it, it talks about the McKenzie method – a way for people to reduce back pain and sciatica by doing a series of exercises which reduce the pain and then strengthen the back.

And the suggestion to do this is given by the orthopedists for a woman who is ‘a dancer’ and very active. So she avoids surgery. And they are proud of themselves because they helped her ‘avoid surgery’ (PS: she had the same diagnosis I did, spondylolisthesis – vertebrae out of alignment).

THEY DIDN’T EVEN MENTION THE EXERCISES TO ME BEFORE SURGERY.

I was over 50, and had CFS already. I told them EVERY SINGLE VISIT that I wanted to walk properly again. They didn’t even send me for PT for walking.

Be warned: what comes is something you should know: doctors will make an arbitrary decision when you come in about whether you should have the ‘treatment for those who have a chance’ or ‘old lady medicine.’

And it will affect the rest of your life.

McKenzie back exercises

I do them every day. The book is called ‘7 Steps to a Pain-Free Life,’ by Robin McKenzie, an Australian physical therapist.

My PT taught me them – AFTER the orthopedic surgeon ruined my back.

When I wake up with sciatica (much less frequently now, and usually due to lying on my left side while asleep without the little pillow – for some reason that side doesn’t like flat), I head for the floor, and, within minutes, start working the vertebrae back to the non-painful position.

They wanted to operate again; all three of the surgeons I consulted – different operation each. I walked away. Still working on getting better at walking, but the surgery took me a YEAR to recover from, and had me back in the ER for non-existent pain control, so I’m not likely to repeat.

Why are older women more vulnerable?

Because, among other things, it’s easier. Cut, get fee, blame lack of success on the patient.

They don’t expect us to improve with exercises, or to do them, so they actually give us less useful PT (warm compresses?).

If you have an older relative, especially a female one, watch for this: the key is to DO YOUR EXERCISES – and to insist they give you ones which work – just like the ones they gave the young lady, or the teenage athlete. They will hurt, but it should be bearable if you’re doing them right, and it gets better. Takes me less than fifteen minutes on a really bad day, and I do them daily prophylactically.

Ask for ‘young woman exercises.’ Tell them you’re aware of ‘old lady medicine,’ and you don’t want it. Stay away from surgeons as long as possible – once cut, things are NEVER the same (there’s a whole section of my abdomen where the C-section left me with no feeling, and the hernia above my belly button has been ‘repaired’ THREE times – and is back).

Wish I could go back in time. What do you think?


Today is the last day of the 0.99 ebook sale for Pride’s Children (upper page on the right).

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.


 

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?

Every writer’s nightmare: corrupted Look Inside

Red Christmas ornament. Words When your sale goes wong; check, check, check; Alicia Butcher EhrhardtGOTCHA! MURPHY’S LAW STRIKES

I deliberately picked clashy colors for the image, where I normally at least try to make something catchy and attractive, because I messed up (yes, I bear full responsibility regardless of whose fault it was), and it may serve as a cautionary tale to other writers.

And as a request for forbearance for readers – don’t always assume the mess you find online is because the writer is an unprofessional idiot.

And, if you’re kind, drop the author a note, saying, “You might want to check your Look Inside feature on Amazon, because it doesn’t look right.”

Trust me, they will (should) be more than grateful.

No, you can’t do everything. No, you shouldn’t be paranoid. But I realize now I’ve seen what happened to me on other authors’ book pages on Amazon – and made that exact assumption: if an author can’t be bothered to make sure their book looks perfect on the Look Inside feature, they must not be very good at anything else, either.

Sigh.

The marvelous Look Inside! feature

After all is said and done – cover, advertising, book description – the most important action call is the Buy button that occurs at the end of your sample on Amazon, at which point the buyer makes a decision on whether you can

  1. write professionally
  2. start a story well
  3. keep interest going

All the advertising in the world doesn’t fix something badly written.

And that sample is the clincher for readers who are now skittish about books which disappoint, from having bought other books and not reading the sample.

So the sample should be pristine, with no errors of any kind. No typographical errors. No formatting errors. No spelling errors. No punctuation, capitalization, or grammar errors.

And preferably both something intriguing, and evidence at the same time that the author will satisfy the reader’s curiosity as the story goes along (as evidence by raising at least a minor question somewhere, and answering it). So, quality.

Because all readers are looking for at that point is a reason not to buy.

Don’t give them one.

A perfect upload doesn’t ensure things will STAY perfect

When I created and uploaded the files for Pride’s Children: PURGATORY, back in October of 2015, I worked my little tail off to make sure that the Look Inside feature was perfect.

Once it was, and all the previewers had satisfied me by showing exactly what I expected to see, I went live.

I then purchased the first copy, downloaded to my Kindle, and examined everything as if I were a customer.

I had done my due diligence – it looked just as I wanted it to.

And since then, I have been afraid to mess with it, because the 5 or 6 tiny typographical errors I eventually found (no book is perfect) were literally tiny – a misplaced comma, a dash which ended dialogue had its quotation mark sitting all by itself on the next line (thanks, MS Word) – and I didn’t want to take the chance of making anything worse.


Here is what happened:

Rather than attempt to tidy it all up, I will let you experience the panic, by putting in the text of the posts I made on my Goodread UK Kindle group author thread.

15 hours, 58 minutes ago:

WARNING: the look inside feature for the ebook, both US and UK (I have not yet checked the rest) is thoroughly broken – and I apologize profoundly to anyone who has looked at it, especially with a thought to possibly buying it, and found the horrible mess that I just found.

It never occurred to me (newbie gets bitten again by the obvious) that anything could change from the way it was when I uploaded it, bought the first copy, and checked it out – about a year ago.

I don’t know when this happened, but I will be spending whatever time and energy it takes to fix the disastrous formatting destruction on the Look Inside feature – the best place an author has to sell a book, because a reader can SEE whether there are problems.

I don’t know, not having bought another copy, and not recently, whether the problem is confined to the Look Inside feature, or somehow infects the copy a reader would download. My downloaded copy is exactly the way I set it up – so again, my apologies if you looked.

I didn’t do this – but it IS my fault not to have caught it sooner.

Mea culpa, mea culpa, mea maxima culpa. It’s MY name on the cover.

I go to fix. Pray for me.

15 hours, 54 minutes ago:

Please note: electronic Advance Reader/Review copies should not be affected – those have never left my hands until I email them to someone.

15 hours, 52 minutes ago:

Phew! The preview here on GR is unaffected.

14 hours, 32 minutes ago:

Amazon Kindle Senior Representative confirmed it’s not my problem, and they will fix it within 24-48 hours.

I have been told by other authors, over and over, to recheck these things – and did not. Let this kerfuffle be a lesson to me to not take anything for granted.

And if it saves someone else time and panic, that would be nice.

‘Check your files periodically, as if you were a customer.’

A few minutes ago:

Amazon’s swift author support came to my aid last night – when I got up this morning, the problem with the ebook Look Inside feature (the print was never affected) for Pride’s Children: PURGATORY was fixed.

They told me last night it would take 24-48 hours, and I braced myself to worry. At 1:30 am, the formatting was still messed up when I went to bed.

The biggest relief last night was finding out that it wasn’t my fault – the file they had from me was uncorrupted.

I will probably never find out what happened, exactly, nor do I really need to know, since it wasn’t my fault, but thank you to the person who reported that the UK Look Inside was not looking good (wish I could remember where I put that notification); I checked later than I should have (I should check these things immediately), and maybe that explains why a 0.99 sale is not doing as well as I had hoped.

But all is well now, and I have learned my lesson: trust, but verify.

And it was an example of the amazing responsiveness I have received over this past year+ from the people who provide service for authors at Amazon. I’ve read of problems at B&N, and others – I’ve only had good service from A.

Admittedly, they somehow caused the problem – but I was asking them to fix it in the middle of the night.


The upshot?

It is fixed – for now.

I ran a sale without checking first (the last time I looked it was fine – really, I didn’t just not look at it for a year!).

I found out by accident that, yes, bad things can happen even if you don’t make any changes to your input files (so I should probably go fix that comma).

Someone may help you by catching a problem – and telling you about it – in which case, thank your lucky stars.

But I should have checked. I SHOULD HAVE CHECKED.

My apologies if you were affected – and hopes you will give me a second chance.


***** Pride’s Children: PURGATORY is on sale wherever ebooks are available at 0.99 (equivalent in your local currency) until the end of New Year’s Day 2017.*****

Books make great last minute presents – an email from Amazon will announce the gift.

To purchase a Kindle book as a gift (from Amazon help):
  1. From the Kindle Store, select the book you want to purchase as a gift. …
  2. On the product detail page, click the Give as a Gift button.
  3. Enter the personal email address of your gift recipient. …
  4. Enter a delivery date and an optional gift message.

The best ‘thank you’ and encouragement you can offer a blogger is to buy their book(s), especially when they do not have a Donate button.

And nobody says you have to READ them (though I hope you would).


Please comment and share your horror stories – I feel like an idiot right now, and it would be nice to have company!

Censorship, prudence, peace-making, black-listing

nuanceIT IS IMPOSSIBLE TO BE VALUE-FREE WHEN WRITING

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

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

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

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

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

and

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

The problem is I’m censoring myself

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

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

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

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

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

And it’s causing me some real discomfort.

Firebrands exhaust me

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

I have the comments. I WRITE the comments.

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

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

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

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

Nuance, thesauri, satire

It’s easier to stay out of the fray.

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

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

I hope to hell it’s temporary

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

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

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

Surely we can do better than this.

What to do? What to do?

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

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

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

Have you had a similar experience?

The 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

The writer’s greatest trap: friendly fire

Feet walking up steps. Text: To be fully responsible means accepting even the unintended consequences. Alicia Butcher EhrhardtIS A CLOSE FRIEND WHO WRITES – AND WOULD DO THINGS DIFFERENTLY IN YOUR BOOK.

Friends who are writers are a unique resource

Writers want the approbation of readers, critics, family – but especially they want the praise of their close friends who are also writers. And it must sound both earned and sincere.

So when a close friend who is a writer takes your writing apart, nitpicking, essentially calling your baby ugly, a major dissonance is set up in your head about what you have written – and whether you need to listen and change things you thought you were sure of.

It is in many ways a gift: if the emperor has no clothes, the emperor is making an idiot of himself, with the well-remunerated connivance of his tailors helping him along. Yes, they are making a fool of him – but he is also making a fool of himself.

Good friends tell you when you’re making an idiot of yourself, and sometimes this should and does bring you up short, followed by insight and realization, and a new path.

Writers have blind spots, just as everyone else does. Most editors think writers are much too close to their own writing and lack the objectivity necessary to edit themselves, and should never do that (and should pay said editors, genuine or scam artists, big bucks to mess with the writer’s work and ‘improve’ it).

Lack of objectivity is a problem

And any writer who doesn’t think it’s a real possibility is already lacking in objectivity by default.

Which is, as I’m just figuring out, a very strong reason for me not to have a writer as a beta reader (or alpha reader – depending on what stage you usually share your writing at; I call alpha readers ones who see rough drafts, and beta readers those who see something which is as polished as I can make it before outside eyes and brains get a look at it).

And when you expect a reader, and get the writer in full critique mode, it is a very uncomfortable experience.

When you ask someone how did you like my book?

In my defense, I didn’t think my reader/friend considered herself a writer – or I would have been far warier, because I know the tendency to rewrite work that isn’t ‘right’ to your own standards and specifications, if you’re a writer. Which is the reason I won’t read other writer’s unfinished work – I can’t afford to get sidetracked onto someone else’s problems when I’m having so much trouble finding the necessary brain power to solve my own.

So, faced with a huge critique when I expected some feedback from a reader and possibly a few questions to clarify why I had made certain choices, my first reaction was to feel betrayed, gut-punched, defensive, attacked where I least expected it, ambushed. I have had the same reaction to close friends who have been critical, who consider themselves experts because of their reading, or who consider they know me and thus know my intentions and my flaws – and poke at my choices. But not to the same level, because they are not writers.

I shouldn’t have let it happen

I was tired – which she should know means ‘not all here’ – and, in retrospect realize she blew right over because she had so much to say. I have also realized it is a potential huge gift to receive a critique of such proportions from someone who seemed to have engaged enough to have serious questions and opinions (see It is daunting to be taken seriously as a writer) – we talked, or rather I listened, for the better part of three hours (and I can’t do that).

Plus, her ego needed soothing, as perhaps she recognized she was doing a certain amount of stomping on my grave, and she is a valued friend I had just never seen as a fellow writer, so my instinct was to shut up and let her have her say. And keep the flow of information coming.

And I couldn’t get away physically, because at the time this was happening, I wasn’t sure I wanted or needed to get away and shut off the listening I was trying to do, because it was literally the first time this had happened. The only other time I’ve worked with another writer was when I was starting Pride’s Children, back in the early part of the century, and my writing partner was working on her thriller, and we would get together to be a mutual support society, read each others’ latest pages over lunch, and talk a bit about it: we learned very quickly not to go to critique mode, and instead to reflect something about the new pages back to each other. If either of us had asked the other, “How do you do X?” it would have meant admitting we didn’t know how to do something, and had no idea how to learn it, and that we thought the other knew it well enough to teach. Fortunately for our friendship, we didn’t go there. Or I think those lunches would have become very rare. Support and critique are mutually exclusive.

Why write about this experience?

I write these posts about the writing process because I’m still a beginner in many senses, and I’m discovering these things as I write about them, and using the posts and the process to make real-life decisions.

And I’ve spent all morning – time I didn’t have and energy I don’t care to spend – dealing with the consequences and figuring out what to do about it.

My conclusion is that I can’t change a word, and I can’t change a thing about my process or the content of my story or my characters. No changes will be allowed to plot or theme or language. I can’t. For me, this whole story – all three volumes (which were always planned to be a unit) – has been locked into its final form except for the actual words for such a long time that I have to take ownership of it as I’ve made it.

I need to be far clearer about what I need as feedback

My decisions have been taken long ago – and the current writing only supports those decisions. Even the most minute changes my friend was angling for are wrong for me. Her feedback reflects how my story hit her, which is an incredibly valuable piece of information for me, as I value her experience and her friendship, and she is somewhat in my target audience.

But I realize I have long passed – long – the point at which I might change anything, however arrogant and self-centered and pig-headed that sounds. And I’m not even sure those changes I might have accepted in the past were what she was talking about – she wanted the core values of my story modified because she didn’t quite like them the way I decided they would be.

I don’t think she realizes this. In the same situation I would have backed off completely rather than talk about how something didn’t work for me. She said she assumed she could speak freely and be frank because we are long-time friends now. And I respect that. I don’t know if it was hard for her, and that’s part of why it came out in one piece, because she had to get it out. She has spent at most a couple of weeks with my story. I have spent fifteen years.

Aftermath

But I’ve spent the morning examining the battlefield (for battle it was, out loud at the beginning, and then in my head as I tried to let her have her say without interruption, while continuing to get more and more exhausted) and picking through the bombed-out ruins, and coming to my conclusion which is: never again.

I gave her the courtesy of writing down as many of her points as I could remember, and of listening last night and of considering this morning whether I needed to do anything.

And have decided on a blanket prohibition against this ever happening again.

Because of who I am, and how having CFS has forced my hand…

I have made my decisions – plot, character, language, theme – and every one of them has taken thought and huge effort and no little time. They will be allowed to stay unaltered. There will be no changes in what’s planned or written, because it’s all of a piece, and I literally can’t change anything this far into the game. I wouldn’t be able to handle the consequences of the changes, and how they would affect the plot, for example.

But mostly just NO. This is the way Pride’s Children is, and all I can hope is that God gives me enough time in this life to write it all out.

It’ll remind me not to seek feedback from friends, as I’ll have to live with the aftermath. And to just plow on ahead, instead of being so damned needy.

Burned paw on hot stove. Lesson learned.


Have you ever been blindsided by a critique?

I am always the wrong survey demographic

Diverse group of people in silhouette playing basketball on the beach. Words: Nope! You really don't want me to take your survey. Alicia Butcher EhrhardtMOVE ALONG; NOT THE DEMOGRAPHIC YOU’RE LOOKING FOR

I can’t fill out your online survey, and it is because you don’t want me in your group of survey respondents. I’ll ruin your results.

Really. In every possible area, I am the wrong demographic for your product.

If I bought your product, I am the wrong person to answer your feedback questions. My answers will either be trite and obvious, or useless.

Why did I buy your product in the first place?

If I bought your product, it was often for an off-label reason, and it’s also probably for a one-of-a-kind reason.

You will most likely not get me to buy your product again unless it perfectly serves a need I have – in which case I won’t need your advertising, or your automatic refill system, or anything useful to you in a marketing sense, and I’ll just buy it again as long as you make it and sell it. On my schedule. Which would give you conniption fits if you knew it, such as my buying a product only during the summers.

If you, by chance, put up a product which is perfect for me, and I buy it and love it, and tell everyone, and answer your questions, and leave a review – you will not find enough other people like me who will also buy it, and you will end up sadly taking it off the market.

In fact, I am the kiss of death for your product.

You fervently hope you are not attracting customers like me as your main audience.

What is my demographic?

Well, I’m female, overeducated, in physics/engineering. And when I see an ad at all, I read it carefully, and recall a lifetime of broken promises from you marketing folk, and it makes me very wary.

I don’t read Romances. Not the modern ones, anyway. They are about people in a very tiny demographic (perfect perky women and billionaires and Scotsmen) I’m not likely to ever come within range of, and I really can’t identify with them.

I don’t use cosmetics, except when trying not to scare the horses in the streets, and then buy an inexpensive new mascara once every couple of years.

I don’t wear heels – that eliminates a lot of potential products. Back in the day, shoes for women stopped at a size 9 (and were made fun of in Clementine: ‘and her shoes were number 9, herring boxes without topses sandals were for Clementine’) – so you can’t sell me women’s shoes, which are extraordinarily hard to buy by mail – the fit and all, you know. I wore a 10 before having kids, and an 11-1/2 W after three of them, darn it.

I am past the age of your female products, not interested in your products for older women (please God, as long as possible). I take as few supplements as possible. I don’t use anything with an odor.

I shop online – but not often, not well, and not impulsively

I’m disabled – and I don’t go shopping. I used to be tall, and you lost me a long time ago because it never occurred to you that a woman might be proportionally shaped, so it was either tall (and thin) clothes, or short (and ample) clothes at the stores, and never a large enough size in the tall ones – and you trained me out of all the female clothes-buying patterns I might have established way back then by having no merchandise available in my size.

I have no interest in fashion – because I was never able to get into it, and the hand-made clothes were never quite fashionable (even the patterns were hard to get in the right size, way back then, and had to be modified).

I have AdBlock on my computer. I don’t use a smart phone to access the internet. On purpose. Even Facebook ads get easily ignored – I’ve permanently tuned them out, and only sometimes bother to Hide Ad so you get that information.

Don’t court me – I’m a terrible consumer

You don’t want me.

And if you ever sent me a product to test, you would be sorry. My reactions would drive you to pull your hair out, and if you followed any of my suggestions, to the poorhouse.

And that is why I won’t fill out your survey or send you feedback: it’s a waste of both our times.


Are you their demographic? Some people actually like to shop.

Is it a mistake to gut your readers emotionally?

ride of lifeOR IS IT YOUR JOB AS A WRITER?

To give them the biggest emotional journey you can, the most stress and pain they can take vicariously?

At least, it is your job to consider their feelings – and how you’re going to invoke them – if not as you write, then at least before you publish.

You owe your readers a thorough exploration of the questions raised by the story. If you present one action, and only one reaction, you’re preaching. Which is fine as long as you know what you’re doing, and some writers and readers are perfectly fine with that.

But not me.

Mountains, anyone?

Real-life choices are made with options. Fictional choices are made with a lot MORE options. Just because writers can. There is no budget needed when a writer says, “Overnight, a mountain had moved in front of her window.” A few black marks and it’s done. Less than a minute of writing time, and we have a new mountain, right where I say it is.

So there’s no excuse such as “it’s too expensive” or “where am I going to get a mountain?”

Since I write realistic fiction, I do have limits that I choose (and shouldn’t use dream sequences with new mountains very often). But the mountains of K’Tae, where Kary sets her SF novel (if you’ve read Pride’s Children, you know what I’m talking about; if not) were necessary for her plot on an inhospitable planet, and cost me practically nothing. Nice, eh?

Readers’ reactions to roller coasters, emotional

Leaving out those who like their fiction tame, and those who prefer a lot of physical action, gives me readers who want to know how the appearance on a single TV interview can make such a difference in the life of a woman who normally hides, due to a carefully managed illness, from any publicity. How much can she take? What does it do to her? How does she cope before, during, and after a roller coaster comes into her life?

Do we want her to get off? Do we care where the ride stops? Is it even a possible ride for her and the other people involved?

Readers deserve an author who takes into account their emotional journey, presents each relevant event as the only possible next event, has a sequence of emotions calculated to lead them through a scene, chapter, book in an inexorable progress (Noooo!) to the only possible end to the story, and then dumps them at the station wanting more.

Margaret Mitchell did that continuously through a very long Gone With the Wind, and left us at the end wanting the more which either she didn’t plan to write, or didn’t get the chance to. And which was so badly mishandled by the writer her estate hired to do the sequel that I won’t mention it – which disappointed many.

How to engineer a roller coaster:

Planning, planning, and more planning is how I do it.

My tools (the books I consult most frequently while setting the journey up) are:

  1. Writing the Blockbuster novel, in which Albert Zuckerman masterfully takes apart several important and well known scenes (from The Godfather, GWTW, and Ken Follett’s The Man from St. Petersburg) showing how it’s done.
  2. The Fire in Fiction, in which Donald Maass carefully shows how to create conflict in every element of a scene (from landscaping to literally nothing happening).
  3. Wired for Story, where Lisa Kron shows how to make a reader empathize with a character with a thorough understanding of how the human brain works, and how we feel.

I start a scene, for example, by asking myself what the character needs to go through emotionally for the scene to work for me.

Then I start working out whether some of the emotions cluster in groups. If so, a smooth transition from feeling to feeling within a group gets planned.

I ask myself where the scene starts, what the emotional changes in the character have to be, and where the character needs to end.

Once I have the character’s path and the actual events working to give a transition which makes some kind of sense, I work out how to get a reader to identify – and take the same journey. It has to be a believable journey. In real life, people go through circular emotional journeys, coming back again to the same thing, over and over, repeating themselves. If you do that in fiction, readers will notice.

You don’t get to take that trip in fiction because it’s boring. Once a character achieves insight over something, the reader expects him to remember that insight.

That’s because stories are the highlights of life, condensed, told as quickly as possible so that readers can get many vicarious lives. My kind of stories, anyway.

Relevance?

That’s where I’m at right now: writing the very first scene in Pride’s Children: NETHERWORLD. In the midst of taking the reader expectations left at the end of PURGATORY into account, setting a new direction for the next level of exploration, making sure the reader gets dragged into Andrew’s head for the battle (yes, Book 2 starts with Andrew), making sure a few old questions get answered, and even more new questions get lodged in the reader’s consciousness, and planning that very long ride up from the station to the tip top of the track and then…?

Thing is, the starting point is partly determined by where Book 1 ended, and where I know Book 2 ends and Book 3 begins.

But I know it has to kick things up to a new level, so I get out my trusty software tools, and my slow brain, dump all the marketing and promotion stuff which has been bedeviling my existence, and start chuckling at what I’m planning to do.

Because the Roller Coaster Designer gets to take the ride over and over and over until it’s as good as she can make it.

Gentle Reader: do you like roller coasters?


Thanks to Stencil for the ability to make up to 10 free images per month. I’ve enjoyed using their easy tools – and every month they give me new choices. I will get a paid account as soon as I need more images – I’ve only explored the surface of what’s available.


I you like my prose, consider purchasing my fiction. It’s written by the same person.

I’m planning to put up a few short stories in a polished form as soon as I can create covers.