Tag Archives: disability

Depression: unavoidable consequence of life-altering surgery?

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

THERE IS SUCH A THING AS TOO MUCH LOSS

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

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

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

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

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

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

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

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

How do you handle depression?

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

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

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

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

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

But it has the advantages of:

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

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

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

Back to the life-altering part

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

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

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

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

It helps to focus you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There is such a thing as too much loss.

I’m perilously close to that point.

Comments?

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

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

I HAVE DODGED A NUMBER OF BULLETS

I will be terrified for a while.

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

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

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

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

The whole subject is incredibly boring.

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

As part of a community, I value my online friends

Enormously. Probably more than most people.

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

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

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

I OWE EVERYONE MORE. REALLY.

THE SHORT(EST) version

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Some aftermath, still iffy

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

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

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

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

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

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

The followup cardiologist visit – too soon?

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

So what next?

Anyone who cares is now up to date.

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

What do I want?

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

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

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


I WANT ALL OF YOU TO LISTEN TO THE LESSON:

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

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


I’m wiped and going to try Next Nap.

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

Chest pain from striated versus smooth muscles

self-diagnosis

DEALING WITH PERSISTENT PAIN EXPECTED TO BE TEMPORARY

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

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

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

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

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

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

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

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

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

Internet lookup of possible sources of chest pain

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

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

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

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

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

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

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

Using the old noggin – a dangerous thing with mine

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

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

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

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

Tools on hand:

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

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

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

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

What to use – and why?

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

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

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

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

Conclusions

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

Where we will keep them until they stop happening.

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

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

I’m so glad I took anatomy.

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

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

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).

Write memories down or risk losing them

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

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

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

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

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

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

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

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

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

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

“One more thing for the To Do list.

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

What you don’t write down may disappear

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

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

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

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

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

Before they get any older

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

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

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

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

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

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


Don’t delay – and keep updating.


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


Did you take the pictures?

Writers censorship by insiders still censorship

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

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

Alicia,

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

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

Thank you, [NW – name withheld]

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

A little background would set this in context

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

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

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

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

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

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

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

Fiction breaks down walls

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

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

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

And you’ve heard endlessly my statement that

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I guess that covers it:

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

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

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

I will happily listen to opinions civilly offered.

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?

Hope in NIH research budget commitments for ME/CFS?

cross-start-line

OCCUPY M.E. FOLLOWS NIH RESEARCH ON CFS

This is a CFS blog as well as my writing blog. There are much better CFS bloggers, so I don’t do much with it here, but I read and follow developments, as we all wait for some kind of answer.

Jennie Spotila does a lot of things, and in particular, runs a blog called Occupy M.E., where she analyzes what the information actually says.

She’s been running a features for almost a year now, called ‘The NIH RFA Ticker.’ With it she examines every week how the NIH allocates research grant money. In her words in the initial post:

“RFA” stands for Request for Applications, and it is an announcement from NIH saying, basically, we will fund $X amount of research on Y topic. This is different from regular funding opportunities, because the money has been set aside. If enough meritorious grants are received, that money WILL be awarded. That’s different from tossing your application into the general pool and hoping it floats.

NIH last issued an RFA for CFS research in 2006, and we’ve been begging for another ever since.

The weekly update post

Every week she sees how much money has been allocate by RFA by the NIH, and every week since she started, the RFA money for ME/CFS research has been ZERO.

From the Nov. 7, 2016 post, the totals for fiscal year 2016 were:

352 RFAs issued, $2,840,680,617 committed to RFAs, and ZERO RFA money for ME/CFS. Yup. That’s over 2.8 BILLION dollars in your tax money and mine.

The latest update (Nov. 14, 2016) showed how much money is committed so far in FY 2017:

51 RFAs issued, $252,167,563 committed to RFAs, and ZERO RFA money for ME/CFS.

We’ve been promised research, and attention, and money for about thirty years now. MOre recently, with activists holding protests, the promises have been made that they’re going to figure out what’s wrong with us.

Jennie just posts, every week, that actions speak louder than words, and, so far, the actions tell us we don’t count, and there is no one interested in studying us (they have to apply for those research grants), and we should stop bothering them because they’re trying.

I dunno. Jennie posts the numbers. I am giving them a tiny bit more visibility here. I visit Occupy M.E. for the weekly update. She is very polite – these are public numbers. She is much more polite than I am.

And every week I’m outraged.

I don’t know where she finds the energy. I can only shudder at how disabled people with unappealing disease and conditions will be treated these next few years.

You might click through and leave her some encouragement; it has been a lonely haul for so long, it would be nice to see that number, that ZERO, actually change. Even then, it will be a beginning, not an answer, to fund research. But to start a marathon, you have to cross the line.

Application to fiction

After all, this is my writing blog, too.

When I started Pride’s Children, and gave Kary this disease as something to deal with, I was afraid that the disease conundrum would be solved – and the story rendered moot – before I finished it. It would still be a story worth telling, set as it is in 2005, but the edge, the urgency, would be lost if the reader knew that CFS, like, say, AIDS, had been solved. Historic, but not critical.

I needn’t have worried. It may take me years to finish the remaining two books in the trilogy – but we don’t even have a start in this one important area of funding. NIH funding. Government research money spent for the needs of citizens who would love to be productive again, and would settle for not feeling quite as sick. I’ll probably win this race.

Pray for us. But also be outraged with us.

Comments make for happiness and the feeling of being heard.

The damaged brain: the OTHER writer’s block

A volleyball alone on the beach. Words: Will I know when the game is over? Or will my brain just slip away. Alicia Butcher EhrhardtOVER THREE WEEKS WITH NO REAL WRITING IS SCARY

I live with a major fear, that my damaged brain, so far able to eke out a couple of hours on a good day for being creative and writing fiction, will some day become unusable for this purpose.

Add aging decline to the damage sustained from illness or trauma, with the inevitability of death at the far end of the descent, and the conclusion is inescapable: one of these days I will write my last, whether I know it at the time or not, and I won’t be able to cajole the neurons into working for me ever again.

This happens to Alzheimer’s patients, such as novelist Iris Murdoch. One day, after not much work, the pen is put down – and never taken up again.

Or a stressful interlude may divert the writer for a while to other matters, and the synapses break down in the interval – and writing is never resumed.

What will the end be like and when will it come?

I don’t fear it so much if I don’t notice it, though I fear greatly the depredations dementia perpetrates on its victims, including the lucid interludes which come and go, with the old desires undimmed.

What I fear is what happens every time I take an enforced break – taxes used to do it to me, preparing for/going on/recovering from vacation does it now every time – of not having my good time available to write with regularly because said good time is required for more pressing matters which I have decided to allow/have forced on me.

This vacation, which ended last Sunday, Oct. 9, with a long day of travel, has been followed by an extraordinarily non-productive week. Unproductive of fiction, though I’ve written several blog posts.

Because I’ve sat myself down at the computer most of every day to write fiction. And it isn’t coming out because I’m not having my good time. It isn’t happening.

Interruptions are harder for me, and take longer to come back from

What I’m having a lot of is interruptions. Hubby is doing taxes, belatedly, for NJ – and has decided to investigate various long-overdue details from the years when I was doing them because he was working – and ‘needs’ things, and he needs them now so he can move forward with his plans, and he doesn’t know what he will need ahead of time so I can locate them the night before, and he can’t divert his attention to something else because whatever it is is on the critical path. One or two of these diversions, which cost people in general almost a half hour each to recover from, and me much longer, and that day is dead to fiction. Yes, I’m that fragile.

Daughter is moving out, coming and going at random, requiring something very small at times – where are the decongestants? Or rather where is the box where I usually find decongestants? Which requires that I stop what I’m doing, important or not, and find them in the suitcase we took on vacation, which I meant to return to the box on the floor which will then go back to its natural place in the bathroom closet – where she would have found the decongestants without bothering me, had I made it that far on unpacking.

A friend who moved precipitously to Florida, without me having a chance to take her out to lunch and talk with, calls. We spend an hour on the phone, and I will take her out to lunch when she comes back to get the house ready for putting on the market – we’ve been friends thirty years – and I want to talk to her. Up until recently, she was right across the street – and we rarely found time to talk because I can’t easily walk over there, and she has grandchildren, and there was always tomorrow – only now there isn’t.

This Saturday started with the leaf-blowing neighbor and his lawn cutting service making a constant noise I could only partially block with my ear-plug-and-industrial-strength-headgear solution – which isn’t really comfortable enough to write with on the days where I’m so close to the edge of not being able to write – like today. The leaf blower just came back for a second session, forcing me to wear headgear again for my afternoon nap.

Coming back from a sea-side vacation with wet bathing suits and T-shirts requires laundry. It has taken chunks out of four days, and will take more: gather and wash, put in the dryer before it gets moldy, get daughter to bring up because heavy loads are getting too much to me, and folding – but it’s sitting on top of my still full suitcase, instead of being stored where it belongs, closets and drawers in several rooms, because it is ‘vacation stuff.’

Healthy people don’t have these fears, even when they get sick

Daughter pushed through, loaded the car on Thursday, drove four hours, unloaded in NY state. Today she drove back with the feeling of being sick, and went out for the evening and possibly overnight – as soon as she had some lunch. I used to be able to do that, LONG ago.

I wrote the above a while ago, before a nap and dinner, and then the hubby came in and complained about being under the weather (he napped all afternoon) since we got back, and the fear died down a bit. Maybe we’re still fighting off that small vague illness we all brought back – and the aftereffects will go away.

I hope so. Even at my pace, I want to use what’s there to write.

But that fear won’t ever go away.


Do you experience this kind of writer’s block? For the same – or a different reason?


***** Just a few more days until the end of the fall Kindle Countdown deal – 0.99 US, UK *****

Amazon US & Amazon UK:

Social Security and disability retrials in Kentucky

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

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

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

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

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

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


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

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

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

This effectively silences them – unless they write for free.


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

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.

Temporary halt in writing to catch up

detourTHE VALUE OF MULTIPLYING YOUR REACH WITH PROPER HELP

I have 30 partial posts.

I have bunches more ideas.

I have the Author Photo series halfway done.

I am giving up on promotion for the immediate future – it’s up to those of you who read to poke your friends. I’m mostly hand-selling to people who I meet online who turn out to be copacetic – and that takes a lot of time.

This would be a great time to write the review you always planned to write, to give Pride’s Children to a friend – or to point a friend here for an electronic Review Copy.

The biggest new commitment is long-term dejunking.

Yup, and since I can’t do it, I have to make the decisions for my new assistant, who is vastly over-qualified for the position and a good friend – and this is planned to take 4-9 hours weekly for the indefinite future, or until this house has lost 80% of its current contents, with another 10% clearly labeled as already selected to be given away/junked.

The plan is to just keep doing this until every drawer, shelf, closet, wall unit, and underbed storage box is down to the minimum necessary. And basket. And garage. And basement.

Our plan – should it work out – is to move to a Continuing Care Retirement Community in the next couple of years – so we’re not responsible for a house.

Which means settling the last child, taking care of some problems, selling the house, and finding the place to spend the rest of our lives.

The benefits?

Someone else will become responsible for everything.

No stairs.

I’m not getting better or more mobile; I need to make the move before I can’t, or my brain goes even further and I can’t qualify to live in a CCRC.

I don’t want independence – I want convenience, and a pool, and a gym, and dinner, and medical rehab facilities onsite. I want the husband to have plenty of things he wants to do (me, I write), so finding the right place IS critical.

I want to be able to walk out my unit’s door, lock it, have arranged whatever supervision might be necessary with the staff, and go someplace else without worrying about the ice dam or the furnace going out or mildew or the ice maker or…

I loved doing all those homeowner things – when I was younger and not disabled.

What does this mean for the blog and the writing?

Probably not much, except for the first few weeks.

I’m not going to do anything organizing-wise without my assistant, and I’m going to try to be coherent while she’s here. So it should come out of the time I’m currently wasting because I have no energy to use it.

I’ve had assistants before, lovely people. It works.

It has just become completely shortsighted of me to try to force myself to do things the way I’ve been trying to operate.

It will be a bit harder with the husband retired, because he’s not used to having someone around. The benefits – a boost to MY capabilities – should compensate.

I’m the problem here, and the pivot point, and possibly the solution.

Wish me well – expect it will be a couple of weeks of less engagement online while I get the system sorted out.

It has already begun

The first day was last Wednesday. I made about a thousand decisions – but they all got acted on instead of being admired and re-stored. Good intentions get very little actual work accomplished.

Bags of stuff left this house, destined for the trash or recycling. Books went to the Friends of the Library, for their sales.

I have to go take a nap – she’s coming at three.

Remember – if you like the prose…

Try the fiction – written by the same person. See sidebar for link.

I promise – I’m working madly on Book 2, and have some shorter stuff to put up.

Boosting the signal: SSA, lawyers, disabled constituents

GOOD READING FOR THE FOURTH OF JULY WEEKEND

And, IF that IS what has happened, ripping off disabled clients (allegedly – must maintain proper form here) is the lowest of the low.

The case of the SSA, the disability lawyer who is under investigation, and the 900 families affected by having their benefits summarily canceled (and then temporarily restored) as a result, is ongoing.

There are better places than here to read about it, but here are the latest links to The Disabled Cyclist’s blog, and he has the rest of the links:

https://thdcblog.wordpress.com/2015/06/27/ssa-fiasco-6-27-15/

https://thdcblog.wordpress.com/2015/06/29/ssa-fiasco-6-29-15/

https://thdcblog.wordpress.com/2015/06/30/ssa-fiasco-update-6-30-15/

https://thdcblog.wordpress.com/2015/06/30/ssa-fiasco-update-6-30-15/

https://thdcblog.wordpress.com/2015/07/02/ssa-fiasco-7-2-15-2/

Please note I have nothing against lawyers – one of my best friends is a lawyer!

The point is that bad lawyers give ALL lawyers a bad name.

Happy Fourth of July, all!

It’s Memorial Day Weekend…How will You Be Spending It?

When you have an online friend who is a veteran, who is disabled, and who is getting shafted – on two weeks notice, over the Memorial Day holiday (see his notes about having 10 days to respond to something that took 4 days in the mail, and arrived on a 3-day weekend, and think if you could respond that quickly).

He doesn’t talk much about being disabled – if you dig you will see the photos – of the metal alignment of his spine.

He’s like me – make the best of what you have left, spend your money carefully and wisely, and be cheerful – but this is outrageous, and I’m dismayed to find it is a large bunch of people.

We have this thing in this country called ‘due process.’ If it can take months to be evicted, how can they cut off benefits in 10 days?

Alicia

SSA/Conn Fiasco

Not that I think many will care enough to read this through (disclaimer–this is a rant, and a vent),but…..how are you and your family going to be spending Memorial Day?

Well,I am a Veteran who is disabled,and I will be spending it worried and afraid for my family’s future,preparing to watch them lose everything we own for the FOURTH TIME during this century (since 2000),sincerely and legitimately because of things that were/are completely beyond my control or because of what someone else does or causes.

Rep. Jackie Speier, D-Calif.,it seems,has some kind of personal vendetta against the attorney that I had chosen to work my SSA case several years ago. Somewhere down the line,he must have done something to tick her off somehow and somewhere imo,judging by the vindictiveness she has tenaciously attacked him with (note: the attorney may or may not be actually guilty of the things Ms. Speier…

View original post 908 more words