Category Archives: Learning to walk again

Everything I have learned or figured out to regain complete control of movement; yoga and other aids to flexibility; exercises I have found or figured out to retrain muscles, ligaments, tendons, and skeleton so that I can walk like a human (goal: return to hiking, hike in the mountains around Seattle and in Parks, National and otherwise); and everything connected with regaining shape and stamina.

Making things worse to make them better

Jetty going out over a lake with the moon in the night sky. Text: There's always dark before the light. Alicia Butcher Ehrhardt

SOMETIMES YOU HAVE TO BREAK THE MOLD

to get to a bigger, better place.

The mold is a comfortable place.

Okay, not so comfortable: it has flaws. You are just used to the flaws.

Until the day when the flaws add up to something so large it can’t be improved.

Only destroyed.

I’m trying to get settled in the new, larger mold.

It’s just taking a lot more work, and a lot more time, than I told myself before the move (if you don’t do that, minimize the cost of the change, you can never get unstuck from the mold).

If you focus too hard on the cost of change, you don’t change. You CAN’T change.

Because change is very expensive, and not just in money.

I’m impatient.

Everyone tells me to ‘give it time,’ and tells me how long it was before they were settled in our new community, before they had unpacked all their boxes, before they knew enough people, before they reconstructed their new life.

But after the change, the invoice shows up and demands to be paid.

As the pain of the move diminishes, and becomes, like all memories, a series of amusing vignettes you recount at the dinner table to people you hope will become new friends, and whom you are now entertaining so they will know you’re not just a complainer (deadly) or a bore (deadly), the pain of the new become more evident: you are not there yet.

For me, it has been the amount of time I am still not writing new fiction.

I’ve spent a decent proportion of time with the internet blocked off, NOT writing new fiction.

Yet.

I sure hope it’s ‘yet.’

You see, I also moved to improve the body.

I have started the PT I so desperately wanted, and which was one of the main reasons for coming to this particular place. PT is downstairs. An elevator ride and a couple of corridors worth of distance.

And next to the pool, so I can just pop into the warm water afterward, and then take a nice shower, and then…

Go back to the temporary home and find myself completely ragged out for the day.

And the next day the sacroiliac joint has given me a day of intense deep aching. So I do the exercises for that…

It’s necessary. Now is the best time. And it has plopped the next barrier to writing right in front of me.

People recommend patience

and not being too hard on myself.

And not expecting too much, possibly even now, since we’re beginning the process of working with Facilities to fix our permanent abode in Independent Living from being gutted, to having a place for everything and everything in its place, a state we are NOT achieving here (doesn’t feel worth the work when you’re going to have to do it all again soon).

But they don’t have the itchy feeling of how much of my identity is tied up in being a writer – and actually writing.

So many accomplished folk here, with long resumes of happy productive lives, whether involved in work for pay or in bringing up happy and successful children, and it serves to emphasize the many things I could not do due to illness, the may experiences I will now never have.

I didn’t expect that part.

Many of them are still doing the wonderful trips and community service and voter registration and visiting schools…

The ones who are past that are often quite a bit older.

And even the ones who are now disabled who are living here often have not been that way for long.

Only now I meet more people than in my previous isolated state

and have had, metaphorically speaking (and without any ill intent on their part – this all comes out in conversations), my nose rubbed in it.

I used to be better at ignoring the fact that I was ill and isolated, and the rest of the world had lives. Problems, yes, but lives.

By a determined cheerfulness in my own life, so that I did not alienate those I still knew, I kept the worst of it under wraps most of the time. It gets very boring to listen to complaining, however justified. I preferred to spend my time with my husband, far-flung kids, and small coterie of friends enjoying their presence and company when I had it.

I made ignorance – avoidance – my bliss.

And I wrote. Things other people can’t. Don’t. Don’t even want to. But which make me unique.

And clamped down on envy as unproductive.

I’m confronting all this a third time.

Fourth? Fifth? All in a bunch, everything repressed comes back to be dealt with in a new stage of life.

I really hope it’s the last time. But it can’t be.

It gets boring, even to me.

The light will return. Proof of that is that I keep trying. If I’d stopped trying, I’d really worry.

This may be one of those raw adjustment times you put behind you once things are to a new normal. But it’s daunting to think it may total a year by the time we’re in the ‘forever home,’ and I get back to really working.

Another very good sign is that I’m aware of it. I’m not happy about the uncertain period, but I still crave writing something coherent, and even more, writing something I’m satisfied with. I know I’m not where I want to be, and that the steps we’re taking should, with a bit more of that patience stuff, put me in a better writing place.

Life moves on, inexorably

I’d just like to think that the effort for change results in a better working environment, and is a net gain.

Ask me in a couple of years.

Meanwhile, this is a recording of the current state of mind.

I have gone back into my own posts, that now number well over 500, to find things I almost don’t remember writing – and I only started blogging in 2012!

Nothing very new yet

except that I realized how sparse even the blogging has gotten, and feel compelled (by me, not my lovely readers and commenters) to put out at least an update+what I’ve been thinking post every once in a while, until I have more substantive ‘content.’

And, looked at in hindsight, there has been an awfully large amount of change survived.

Please pray for rain for California, and no rain in some other places – that has been, after the elections, another huge concern: we are right in the plume of the Camp Fire, and yesterday were in the ‘hazardous’ category. Worrying about the firefighters, and all those who have lost lives, family, and homes. And wildlife. And what happens after.

And, as usual, not being able to do a darned thing.

Be well. Write when you have a moment.


 

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When you’re heard, good may happen

Winding road into a sunset with a tree on a hill. Text: One step at a time this road leads somewhere. Alicia Butcher Ehrhardt

SMALL STEPS LEAD TO MILESTONES

There’s no point moving cross-county if you’re not going to improve some things in your life.

Improving the physical plant happened today in two ways.

We have what should be our permanent home in Independent Living.

Moving in is in the future some time, because they are changing a whole lot of ‘features’ into what is their new ‘standard’ for these units. So this unit, which has not had a lot of things done to it since it was built in 2000, will have just about everything changed.

I saved the basic list from an email I wrote a friend in Australia:

  • They’re going to completely re-do the place, as it hasn’t been done for many years.
  • We will get new kitchen cabinets and appliances. New counter tops.
  • They will install our washer and dryer.
  • New flooring throughout. We get to choose what, and colors.
  • Crown molding lighting – and ceiling fans (they move the air-conditioned air and heat noiselessly on the lowest setting, so the heat-exchanger doesn’t come on as often – quieter).
  • The bathrooms will be done – completely new shower and counter and sink in the master bath, and I want an accessible shower in the other one, which will be mine! All mine! for the first time in my life. I HATE sharing bathrooms.
  • All the window treatments.

Plus whatever we want (there may be some walls moved, doors covered, etc., depending on where Bill’s office area ends up).

So quite a lot, and apparently the contractors aren’t fast, and the holidays slow things down even further.

It is a bit sad in there right now – and their plan is to bring things up to the current standard every time a unit is occupied by new tenants.

We may not be in before Christmas, but a girl can hope.

Thing is, the sooner we make OUR choices, the sooner the whole thing gets underway. So I will be nagging. Or whatever it is called when you’re the squeaky wheel.

We will have to pay for any serious upgrades; I will see what I can get due to being disabled – there are strong laws in California about accessibility. [Note: not much that applies to personal spaces such as apartments; plenty for public buildings.]

Meanwhile, I’m also upgrading me

I had my intake visit with the lovely Heather from the physical therapy department.

She’s what got me thinking on the topic of being heard, because, for the first time in a long time, I’m taking charge of the improvements for the body I inhabit.

I like the system here with our new U. California-Davis Medical Center (UCDMC) doctors. They have the first patient portal I have ever used which has me raving about setting it up and using it.

Just think: if you send an email to your doctor, he or she will respond within 48 hours. Unprecedented in New Jersey. And the portals back there were the most awful things to set up and messages through.

Here they put up your test results as soon as they’re available, and just casually mention your doctor hasn’t seen them yet. In NJ, the law said you could have them, but it was like extracting teeth from small fowl, and somehow they were never available soon, and never before the doctor had seen them: bad technology trumped obeying the law.

So, back on topic, I requested a referral to PT here in this facility, and the doctor not only did it without making me go visit him, but it was handled internally AS IF I WERE THE PAYING CLIENT. They called when they received it, made an appointment immediately, and I just popped on down.

Heather listened, and did what many places don’t seem to bother with: she asked my opinion, and my goals, and then very carefully assessed where I am. Then she proceeded to give me exactly what I asked for: exercises to strengthen the lower back to support walking. She listened about the ME/CFS, and how much energy I don’t have, and took that all into account. She will see me once a week, so I can do things at my own pace – something no other PT place has ever ‘allowed’ (they all wanted, and said insurance would only pay for, a 3 times a week schedule).

Delving into the devil in the details

I don’t know if there will be snags in the PT. I’m pretty sure the remodeling may have some, as we were given no lists and no budget, and some things, when I asked the same question several times, would finally yield a different answer.

We’ll see for both, but this is why we came here: to have options.

PT is downstairs. A couple of elevators and corridors away. The amount of energy that will save me, which can be used to do the PT, is prodigious. I can actually see doing enough of this to find out how much my walking can be improved.

Surgery is not on my list, especially not now, as I haven’t found an orthopedic surgeon who actually listened, and who could promise more than maybe. Also, it takes us ME/CFS types a LONG time to heal, 6-12 months after the surgery which has led to me not walking, back in 2007. It is too long to do again unless I have firm promises, and the logical thing to do is PROPER PT, not PT for little old ladies as I had before.

Also, I made sure we picked the UCDMC system as the only local one with a teaching hospital (though, alas, it is in Sacramento, not Davis – huh? – but it’s not that far), and this place does post-surgical rehab right here, and they apparently spoil you in Skilled Nursing while you recover. So, if the PT doesn’t do what I need, I’ll see what else there is – but from the point of actually doing everything I can (I’m one of the young ‘uns here) that should be done FIRST (the PT in New Jersey before the spinal fusion was a joke).

Teaching hospitals usually have the best facilities, and I’m hoping, orthopedists.

The PT people here are set up for old people! They work with our kinds of problems. Spinal stenosis (narrowing of the channel which has your spine in it) is quite common, as are walking problems. I’ve seen a lot of things in other people, and talked to many, here.

Maybe they have solutions.

So, not blogging much

Because this reconnecting to things we dumped in New Jersey is, quite frankly, boring. We did it deliberately, and it is taking forever to re-build a life, but everyone who has moved further than ten miles knows how it is.

Doing everything we should. Trying all the activities and swimming in the outdoor pool. Still have no car – and still haven’t jumped through the last hoop (getting a CA driver’s license) because there has been no time (and the studying first is a good idea).

But finally the two-bedroom is on the horizon. And we can actually finish unpacking, and hang the paintings, and have something other than off-white on the floor.

Meanwhile, the Pride’s Children characters are starting to nag, and I keep trying to form some kind of a schedule and have a tiny bit of energy go to fiction. I have done no marketing in ages, and have sold maybe five copies in six months. You can really disappear that way. It’s a good thing I’m not a quitter!

As I always say: I’m working on it.

And how are you?


 

Were you wondering where we were

 

Part of Alicia's face with pool in background

THIS IS WHAT ALL THE FUSS IS ABOUT

This is what I moved Heaven and Earth for: to move to a place with a pool. Not just any pool, but one in the same building, and one of four.

And, of course, we moved so the kids won’t have to wait until we’re even older, and then help move Mom and Dad into the old folks home.

Things have changed in the world, and we no longer needed a big house and two cars in the suburbs to bring up a family.

And we were definitely not enjoying life, taking care of said house. Most of our friends are moving – and suddenly our quiet suburban court was no longer the place where we hung out. Not that I’ve been comfortable hanging out outside for years now, since I stopped being able, physically, to do even a half-hour of gardening (I truly didn’t mind pulling weeds) at a stretch. No point in lovely perennials if you never get out of the house.

The saga continues

We’re living in our second temporary quarters of the move.

The first was an Extended Stay America just north of Quakerbridge Mall on Route 1 in central NJ. We were there from the day before the movers took our stuff away (a night we slept two hours at the motel, and then stayed up all night at the old homestead while trying to get everything packed before the movers came.

Not the best method for me – I’d sleep a half-hour, get up to pack for a couple hours, repeat – all night long. I’ve packed that way for ‘vacation’ trips before, and it isn’t pretty. But it had to be done.

But this is much better because we’re at the guest suite until our furniture and boxes arrive at the end of the first week of September (NJ is a long way from California by moving van), and finally starting to catch up on sleep and get hooked into the system here.

The food is too good

Shrimp and lovely no-sugar-added carrot cake for dinner tonight, with a salad someone else prepared – but I can already see we will have to be careful, or the pounds will pile on – and the clothes arriving next week won’t fit!

The hours are a little on the early side for what we’ve been accustomed to, and we’re getting into the habit of being exhausted well before midnight – feels odd to a confirmed night owl, but you don’t argue with dining room hours if you want to be fed.

Photo of fitness center showing hot tub, therapy pool, and indoor pool

It took me two days, but I finally had time and energy – dropped the laundry off on the way down, and headed for the pool. For a while.

Then I took a shower in their well-appointed locker room (people don’t usually bother with locks) in the handicapped stall because our unit doesn’t have the seated shower. Let me tell you, I haven’t felt this safe getting clean since we took down the shower doors back in NJ months ago because the agent said the house looked tacky with them (they were old and corroding, but I could lightly hold onto the inside bar for some stability).

I have achieved my goal of avoiding a fall, even thought vertically challenged. We’ll have one of these showers in the permanent 2 BR apartment when we get it, but meanwhile I will take my safe showers by the pool. Falls are a major cause of problems for people as they get older.

So the first stage of the move in is over (we put things in the drawers!), and by the next time I write, we should be in our permanent temporary (1 BR) quarters, waiting to see what becomes available for a 2 BR.

In excellent spirits, if still figuring out where everything is

And you do need to take your keys and ID badge with you every time.

Not completely coherent here, but we are okay, the worst is probably over (except for the move IN coming up, and the second one some time in the future), and everyone here has been so nice.

I have to figure out a better way to send the photos to the blog from the iPhone, too, but too many details to worry about right now, and my cobbled get-arounds eventually work.

So bye for now. More when I have it. Moving is a pain for everyone, I’m sure, but eventually it will all be over.

Can’t wait to get settled enough to write – I’m way behind.

Oh, and the fitness expert/instructor seems awfully confident she can get me walking again. Please pray.


 

Boosting Jennie Spotila’s post on dancing

Little girl in bikini dancing on beach. Text: Dance. It's good for you. Alicia Butcher Ehrhardt

TODAY IS ME AWARENESS DAY

Jennie uses her inability to dance as a metaphor – the entire post (and her blog in general) is always worth reading.

This excerpt chilled me, because we’ve been TOLD, by the NIH (National Institutes for Health) and its director who has been ignoring us for decades, Dr. Francis Collins, that we’ve getting DOUBLE the research money this year that we had last year:

If you see ME, you are watching a disaster advancing before your eyes. It’s not a disaster because the powers that be are simply unaware of it; they know. And it’s not a disaster because ME is a difficult disease to unravel. After all, cancer is a difficult disease to unravel. What can we do about complicated problems? We invest the resources needed to solve them.

ME is an unsolved mystery because the biomedical research enterprise has consistently refused to invest the funding and expertise needed to figure it out.

NIH points out that it has nearly doubled its investment in ME research from 2016 to 2017. But even NIH has admitted that ME funding must be 10 to 20 times its current level. Compared to the need, NIH funding went from .04% of the need in 2016 to .07% of the need in 2017. In other words, double of practically nothing is still practically nothing.

DOUBLE OF NOTHING IS NOTHING. Remember that – it’s an old joke.

Please read her whole, excellent post.

Dancing is a human right

No one should stop you from moving except yourself (and we all had that desire to move as small children, so ask where it went, if it’s gone).

Moving freely in your body, with energy, is a human right (and we’d be attached to rocks if we didn’t have it). Except I can’t any more, and haven’t had that energy in a long time.

I gave my remaining love of dance to my character, Kary, in Pride’s Children, because I know what it is to dance for a short while in my kitchen – something I lost years ago to both the ME/CFS and my back problems – and miss daily.

The end of Chapter 16 in Pride’s Children: PURGATORY (Andrew comes back unexpectedly to pick up a script):

Dance excerpt 1, PC1, Chapter 16

Dance excerpt 2, PC1, Chapter 16

I kind of like this one.

I REALLY miss dancing.

Shall we dance?


Remember, my royalties for May go to the fight against ignorance and lack of research.


Thanks again to Stencil, for giving me the free image (the words are mine) of a little girl dancing on the beach. It was perfect.

Think ahead about accessibility in housing

Long flight of steps. Silhouette of human wearing pants. Test: Too many stairs. Think Accessibility. Someone will thank you. Alicia Butcher Ehrhardt

NEVER THOUGHT I’D HAVE TROUBLE WITH STAIRS

And it’s a bit of an exaggeration to think that every single home in the nation should be accessible to people with physical disabilities.

Or is it?

Odd development.

We bought this house when we were both young and childless because it was the ONLY home left in this particular subdivision, the ONLY one with mature trees that the real estate agents showed us, the ONLY one on a quiet cul-de-sac.

I fell in love with the trees.

New construction in New Jersey tends to be on former farmland. That’s because of the tax structure: farmland is encouraged, so vast tracts of land in the Garden State are technically farms, and something is planted often enough to keep this tax designation. Not for me to understand or go into the details of that.

But every once in a while, someone who needs money (probably), maybe as a result of a death in the family and land passing to a younger generation, or need for more McMansions, or whatever, sells a plot of land which is converted to residential and immediately turned into mushrooms: houses dotting the land with no trees around them.

Many of the young urban professionals who then move to the new suburbs are a bit cash-challenged, and they do minimum landscaping, so that years later the developments STILL look like blank canvases – with a few huge houses sticking up, one per acre or so, with a few bushes around the base of each.

Free exercise?

Our house is a split level. With the framed-in attic, it had FIVE levels, joined by FOUR staircases of 7, 7, 7, and 5 steps. We eventually turned that attic level into a fourth bedroom and bath – occupied first by the nanny for the two oldest, then me with the youngest after a couple of problems made it desirable for her and I to sleep together for the first year. After that, the oldest child still at home got the privacy and status of the aerie. Each in turn.

I noticed, even back before kids, that we tended to live on two of the levels – living room/dining room/kitchen plus main bedroom/master bath – and I was already limiting the number of times I’d go down to the basement.

Then I had the first two, and then I got ME/CFS, and things got rapidly worse, and then the third child…

For a healthy young mother who needs lots of exercise, and has a lot of energy, maybe wasting a bunch of it on stairs makes sense. Every time a baby needs changing, a toddler someone to help at the potty, a kid to be reminded of doing homework, a husband or wife to be called to dinner – stairs.

As a nation, we don’t plan ahead for accessibility

Grab bars in showers, clearly helpful for anyone from a young child learning to shower on her own to a mother recovering from a C-section – should be required in every tub/shower enclosure. They aren’t. I have been using the shower door’s towel rack for this for decades, always conscious that it couldn’t take real stress – because it wasn’t designed for that.

Floor plans with hallways wide enough for a wheelchair aren’t built – who could possibly need them?

MOST homes become a trap for the disabled. I can’t tell you the number of days, when the back pain from botched back surgery in 2007 was particularly bad, that I literally crawled up those flights.

And as vertical stability even on good days has become a challenge, how many times I come down one of those short flights backward because one hand holds a few things, while the better right hand grabs the rail – because we have them only on one side of the stairs.

My husband’s mom hard a hard time getting up to the living room as she aged. Was that part of the reason they didn’t come often? I hope not.

Guests from a singing group had the same problem – as we all aged, some had a very hard time (at all the homes in the group), even those four or five steps to a front door became problematic.

So, at a time when some people would like to age in place a little longer, that much-loved home becomes dangerous.

The worst part?

When you go to sell a house, often to much younger people, accessibility features that are too obvious say ‘old’ and ‘dated’ and ‘belongs to someone I don’t want to think about becoming’ – and are literally detriments to a sale.

No one wants to think ahead.

The thought of needing accessibility features some time in the future scares off buyers.

Ours aren’t too obvious – we never installed those grab bars, or added the second handrail on each section of stairs, and don’t have wider hallways (it’s a tract house, lovingly landscaped over the years) or an accessible kitchen.

I’ve never had the energy to insist on making my own home more accessible and convenient for me, since I don’t absolutely have to have a wheelchair yet, and can get around on the bad days by hanging on to things.

Do I want to stay in this house?

We’re past that point now, as I also don’t want to be stuck in this climate, and we don’t need the two extra bedrooms any more, and more and more of my older friends have either moved away or don’t get out much either.

The kids are flown each to a different State of the Union. And as far from each other as possible.

But it’s never really been an option to stay.

We moved in in 1981!

And will move out in 2018.

I don’t have a choice: I have been defeated for a long time. I just didn’t want to admit it. Or rather, I did – at least five years ago – but it’s taken this long (and some life events) to get the husband fully committed to the idea of transitioning into a much smaller apartment in a retirement community with facilities – such as a pool, gym, and daily dinner. And one with, we hope, no accessibility problems.

This time I’m thinking it through, all the way to the possible wheelchair.

There’s a reason old homesteads used to have a suite built on the main floor – the ‘southwest corner’ – in advance of needing it, for a widowed parent or maiden aunt. Good view, warmth – and no stairs.

It’s about time.

Have you thought about accessibility?


Thanks, as usual, to Stencil for the use of up to ten free graphics a month. It’s been fun to pick an image, think up some words, play with their text features, and insert at the beginning something that ‘goes with’ what the post is about.


 

Walking around in fear is stressful

IT IS NECESSARY TO CHOOSE TO DUMP STRESS

I’m walking around fearing sudden death, sudden incapacitation, and the need for more time-sucking procedures/tests/doctor visits/hospitals…

It’s too stressful to LIVE THIS WAY.

But after a certain number of life hits on the head with a 2 x 4, there comes a state close to ‘learned helplessness,’ where, if you’re not careful, you LET the stress have free rein – and, while you can’t change reality (whatever that is for you), you have forgotten that you CAN change your attitude.

It never stops, the stress from life

In addition to the medical stuff, which came unbidden and must be dealt with, willy nilly, I now have some dental stuff – and what the dentist thinks is necessary to do.

And I’ve accepted the job of ‘person who locates and chooses our permanent abode.’

Permanent, as in ‘where we – husband and I – will live the rest of our lives.’

The permanent solution to life

We are looking at the particular model of a Continuing Care Retirement Community (CCRC) for a bunch of reasons, the main one being that we want to spare our children (none of whom live close to us now) the ‘problem of mom and dad’ – basically, what to do with us when we’re no longer competent to manage our own affairs, and they have to step in and make decisions FOR us.

We have seen, first hand, how our parents dealt with this.

First hand – and at a distance.

And it is an interesting general problem which we’ve now seen proceed four different ways!

In Mexico City, my four lovely younger sisters have done the ‘huge extended family takes care of mom and dad’ – and are continuing to date with Mother. Done with love, it has still taken a huge amount of resources, and I have been in no position to help with much – I barely manage to visit every couple of years, and do the tiny bit of US paperwork (still incomplete) because my parents are both US citizens.

In the States, my lovely sister-in-law, who has always lived much closer to my in-laws, has undertaken the huge and complete burden much of the time, shepherding her parents as they wished and she could, and pushing for more permanent solutions when they had to be undertaken. By herself, with occasional help from her brother – as she requested it – she is still supervising all the care for my FIL.

We will have no child close, geographically, unless we move close to one of ours (and that child doesn’t move following professional opportunities, the thing that took them far away in the first place). We have no extended family in the States.

And I, with my disabilities, could provide little help to them, even if I lived close.

Making our own choices requires an enormous amount of work NOW

Evaluating places to move to, figuring out finances (husband is doing most of this part), comparing the amenities – and the long-term healthcare options – at each place has become my additional task, added to trying to write, learning to advertise – and the energy-sucking cardiac rehab exercise.

The additional task that comes when you decide you no longer want to be in charge of a suburban NJ house is selling it. Which require getting it ready for market. Which in turn requires fixing a number of ‘little’ things which, while they don’t affect the quality of living in a house all that much (such as a bump on the driveway from a tree root), WILL affect either the salability or the eventual sales price.

And the final task: dejunking a house we moved into in 1981 and reared three children in (and homeschooled them in).

Even with an assistant – whose time has been mainly spent lately helping the Master with the annual gardening tasks, not me with the dejunking – the decisions are mostly mine. And I don’t make decisions easily (that brain fog thing you have with CFS) or quickly, even with help.

There are twin mottos to keep me going: ‘If it doesn’t give you joy, out it goes,’ and ‘If it won’t fit in a two-bedroom smaller apartment, out it goes.’

Even then it is hard to make the decisions, and they must come out of my tiny daily supply of ‘good time’ – which is also my WRITING time.

Compartmentalization – and all the other tricks

The stress accumulates. I notice. I poke holes in it, take the time to do my de-stressing yoga-type breathing. Repeat.

Because there IS too much stress right now, even if the ultimate goal is much less stress.

To Do lists. Using a Scrivener Project for each of the tasks.

Doing the required things – I will not give up the cardiac rehab exercises, even if they are not yet providing anything much in the way of extra energy.

And letting go of the guilt, including the guilt that pops its head up because I can’t contribute what I should have been able to contribute to this household, had I not gotten sick all those years ago. A hardy perennial, that guilt.

And the guilt of actually spending that money we have carefully been not spending all these years, so we could take care of our needs in retirement.

And, almost daily, talking myself down from the ledge of ‘Woe is me!’

Writing suffers when the writer is stressed – normal

Blog posts have suffered, and will continue to, but, ironically, I need this outlet – because it de-stresses me to pin all this stuff to the ground in its little cages, where I let one problem child out at a time, on my better days.

The writing happens most days – though not as long. I have learned to accept that pinning something down on a timeline I haven’t looked at in two years WILL take that day’s energy – and is a GOOD use of that day’s writing time – because it MUST be done.

Most of these are from things I probably should have figured out long ago, but 15 years writing the first novel was already long enough!

I think there aren’t too many left, but have just dealt with a doozy.

And am very pleased with myself because it DID work out – and locked in, again, that odd feeling I have sometimes that I am a chronicler of an actual story. Good if you’re writing mainstream fiction with a long timeline, many characters (64 NAMED characters as of the last time I counted), covering locations in several different countries and states.

My solution to stress always includes writing it out

That’s how I make sense of the world, take the circling thoughts out of my head and acknowledge and record them, and eventually find ways to deal with them.

It is also part of my usual process to… I don’t want to say ‘cheer myself up,’ because that somehow implies putting a false face of happiness on top of the real problems. To talk back, to the stress, to the situational depression, to my feelings of inadequacy, to the long list of things I SHOULD have done and SHOULD be doing which get ignored.

Basically, the MORE dysfunctional I become, or allow myself to become before I notice that it’s gotten me again, the LESS I can do to change anything that’s causing the dysfunction, and so I have to get out of that state. And I’ve already proved – by trying – that I cannot accept chemical help and still get anything done.

So it’s my own resources, the written process after the thinking, and continuing to chip away at everything as long as God give me life and any ability to do.

And it’s a good time to prioritize (which I’m not doing as well as I need to).

MY motto is: “I’m working on it!”

Thought you’d like to know – and me to record – what ‘it’ is right now.

I’m working on it. You?

 

 

 

 

 

 

 

Writing poised under the Sword of Damocles

Pile of rocks on mountain. Text: What is ready to fall on your head? Alicia Butcher Ehrhardt

UNSTABLE ROCKS WILL CRUSH YOU

There are too many things going on in my life, and all of them critical.

But the thing that is making it hard to write right now is one I hadn’t expected: I can’t remember quite how I felt BS (BEFORE STENTS), when I ONLY had CFS.

And by ‘feel’ in this instance I mean sensations in the BODY.

What sensations am I having that are worrisome?

I’m writing about these because they are both common and keep happening.

I’m doing far more exercise (even in my pitiful little amounts) that I was doing before. Part of it has involved a rowing motion with my arms against a resistance, which uses the chest muscles (pectorals) in an unaccustomed way.

So it isn’t really surprising that these muscles have a spot or two where there is sensation. By which I DON’T necessarily mean pain. Just a tightness that is in the muscle, in places which vary but are repeatable. Over and above the left breast. Outer, center, inner – is what I call them. Once of them seems to be relieved by burping. There are one or two similar spots on the right side – but the right side is dominant, and the muscles may be more used to being used. So, less noticeable?

Are those spots connected to the stents? Or are they simply the same spots on the same muscles – because that doesn’t change. Are they INSIDE the ribcage? Or outside, in the overlying muscles. It’s hard to tell.

There is a slight shortness of breath – when I climb a bunch of steps in a row. Or walk a longer distance than usual unsupported, such as when I walk from the house to the car. Or walk across the lawn to the mailbox and back. The heart rate can go up noticeably – until I sit down and let myself relax. I should expect SOMETHING when I do that – when is it too much?

There are muscles in my upper arms which get a bit weird – sometimes one will make it impossible to sleep because it waits about 6 seconds, and gives me an electric shock – for very long times, until I get up and do some range of motion exercises and some stretches and maybe eat something, and sometimes take ibuprofen (I’m trying to minimize NSAIDs, so I resist).

The question: are these significant?

All of these things could be symptoms. Of clogging arteries. Of something about to happen again. Of something not quite right.

But the thing is that they are not up to the level of being ‘reportable’ – or, heaven forbid, calling the doctor about on a weekend, or going to the ER.

I feel I’m on permanent ‘symptom watch.’ I’m waiting for the symptoms to get worse before doing something, in the same way I should have done something when the shortness of breath happened BS.

They used to drive me crazy in the hospital asking me to rate my pain. For someone who lives with a fair level of constant other pain, it is difficult to choose the higher numbers on the scale, and I’m aware of both minimizing and exaggerating as possibilities.

So, not being able to say ‘this is significant,’ and instead being in ‘wait and watch’ mode continuously is stressful. And stress is bad.

It would help if I could remember which of these were life BS

Standing has been a problem for years, and causes pain. So is my exercise making that worse? Or is something more nefarious going on?

If I walked with the walker BS, I often had pain the next day – I’m supporting part of my body weight with those chest muscles and arms on the walker.

I did as much exercise as I could do prudently before – including a lot of isometrics, which involve clenching a muscle and holding it. I know there were times when I did more than usual, and really noticed it.

And I used to ride the bike, too. The next day I usually felt it.

But I had no reason before to make an accurate record of pains and locations – my modus operandi has always been to ignore most of this stuff as much as possible so as not to waste energy on what I couldn’t change anyway.

PTS anyone? Post-traumatic stress?

It’s one of the major symptoms, being hyperalert, and wondering and worrying about things which may or may not be triggers.

Always being on alert is more than exhausting.

Wondering exactly where on the continuum you’re supposed to do something wears you down. That and wondering if it’s new/real/important. Or ignorable.

So I’m sharing with my blog, and hoping that noticing and documenting feeling physical and mental is enough to disarm them – and that the PTS is slowly going away as I do so.

I really don’t want to have to find someone and take the energy to explain all this stuff to.

Thanks for listening, if you got this far. Share if it resonates.

On a bicycle I’m a human being

freedom comesLIFE IS ABOUT USING WHAT YOU HAVE, OR HAVE LEFT

It is a very odd thing, but psychologically important, that you feel different in different circumstances, depending on how you see yourself and society sees you.

It’s probably built into the brain we have that is evolved from millenia of those who survived to pass on their genes: we automatically evaluate those we see for signs of weakness, even when we don’t plan to eat them.

Where is this going?

On a bicycle you can’t tell that I’m disabled. That I can’t walk properly, or for more than a few steps without a walker. I just look like a woman out for a bike ride.

I know many people who can‘t ride a bike because their knees won’t let them, or because their balance is challenged, or because they can’t sit on one for very long due to many problems.

In some sense, I’m better than them.

We judge automatically, instinctively, and if we’re not careful, permanently.

On a bicycle I’m a normal human being.

Not something which botched back surgery back in 2007 has condemned to pain every time I stand for more than a few seconds, and who can’t push off on a stride, but only swing legs from the hip.

Why am I thinking about riding a bike?

Because I have had a major crisis of self-confidence this year, earlier, what with the chest pain and the stents, and the recovery.

And a couple of weeks ago, I got the bike out, did the ritual (helmet, cellphone in the bag under the seat, make sure the hair doesn’t get in my eyes, clip on the pants leg…) and scared myself even though I managed to go out for a spin around the neighborhood.

Forgot my bike gloves, which I later regretted, as my palms were definitely tingly by the time I got back.

First time this year. First time since the approaching winter made it too cold last year. First time since the horrible viruses of November which lasted for three months. First time since I was last myself… You get the idea.

Getting on the bike was NECESSARY to prove to myself I was still myself.

And it failed – in the sense that I felt shaky and uncertain and scared. Because I knew that I was afraid to stop if I had to, because the side effects seem to have emphasized that I’m vertically challenged. Because one of the young college undergraduates in our choir was wearing a cast because she fell off her bike. Because a friend who has CFS fell and broke his foot.

For any number of reasons, that first bike ride didn’t make me feel ‘normal.’ Even my normal, which is a lot smaller than many people’s ‘normal,’ but better than the normal of my friends who are bedridden. I wasn’t back to just hopping on a bike and going for a spin, even the short ones I take.

Solutions?

Well, giving up riding a bike seemed premature (though if you’d felt as unstable on that bike as I did, you’d be seriously considering it).

Buying a new bike? This bike I have is ancient, and rusted, and in need of serious maintenance. A recumbent bike? Or a nice, stable tricycle-for-grownups?

We are looking for a retirement community, and a move to another state is a possibility, and I’m trying not to acquire more stuff now or make permanent decisions about things like this until we are settled.

So, don’t ride the rest of the time we’re in suburban NJ?

The odd physicist’s solution

Or should I say, the physicist’s odd solution? Because it involves physics of stability.

Bicycles are stable, more or less, IN MOTION. 2-D stability, as it were. That’s why they have the kickstand. In motion, they have that gyroscopic effect that they resist falling in the direction perpendicular to their motion. Ie, sideways.

Tricycles have proper 3-D stability. Because there’s something in the perpendicular direction that keeps them from falling over, with or without you on them, whether they’re in motion or not.

Training wheels achieve this effect when you’re learning to ride.

We’re thinking constantly about all the stuff in our house and garage, because a 4 bedroom house with basement and garage has a lot more areas to stuff stuff than a 2 bedroom apartment in a retirement community, which is what we’re aiming at.

One of the things stored in our garage for AGES was a bright yellow cart meant for pulling two small children behind your bike. And that’s what my brain kicked out: stability. A cart intended for small children was designed to be inherently stable: the bike + cart has to be stable while you’re putting those little ones in the back and fastening the seatbelt. Fairly heavy duty for its job: those are your kidlets, and they are small and precious. And HIGHLY visible. With its own reflectors, even.

This time I didn’t fail

Almost didn’t get it attached – that was work. And the attachment mechanism has a plastic pin which went through the snap lock around the bike’s pole – which was maybe not as flexible as it was twenty years ago (plastic seems an odd choice, but that’s what it was). I couldn’t get it through the hole.

So I went and found a nice solid metal bolt of the right diameter, with a nice nut, and have attached this sucker pretty permanently to my bike. It can be removed, but I’m not planning to.

Success!

I put the helmet – and gloves – and bike clip on, stored the cellphone in the little bag, and found that my combination made it much easier for an unstable old rider to get started.

It may have been a placebo effect; or partly psychological (that self-confidence which had decided it found a solution). But I didn’t care. I was up and going, only a little shaky.

I put it to the test on our court: I tried stopping – it felt more stable, not as it had the last time, because I could trust the bike not to fall over, so I could afford to lean on it a bit. It was easy getting started again – I didn’t have to be on a safe place, like our driveway. I was just a woman on a bicycle, stopped. Phew!

All I needed was to not worry about killing myself or damaging something.

I rode around the neighborhood a bit. I stopped to see an old friend I haven’t visited in half a year. She didn’t even think about the cart on the back, but instinctively understood it was more stable.

And I got that little bit of self-confidence up and running: losing the ability to ride a bike was in the same category as when they take your keys away and don’t let you drive any more.

Because, you see, on a bike I’m my normal human being, and you can’t tell how many things I can’t do.

Then I went in and took a nap.

Dealing with stress after medical trauma

Painting and drawing tools. Text: Have the tools? Now do the WORK. Alicia Butcher Ehrhardt

ACKNOWLEDGING DAMAGE

Damage comes in many forms in the aftermath of a medically traumatic event to self or loved one.

Humans are fragile.

The point of no return is frighteningly close.

Way too many people I know have lost a parent permanently over a stupidity: the hospital ER staff didn’t consider Mom was dehydrated – until her kidneys were permanently damaged.

Inappropriate drugs in the hospital pushed Dad over the edge.

Cousin Larry went in for routine optional back surgery – at 70 – and didn’t come out. I am a couple of years younger only, and facing possible ‘routine optional back surgery’ to be able to walk properly.

The hospital gave a friend access to infections somehow, and he almost died after a routine biopsy.

I could EASILY not have made it: the 95% blockage causing the chest pain was missed TWICE by the ‘gold standard’ cardiac catheterization, and I was actually sent home as ‘fine’ the first time, to spend six days dealing with chest pain I had been assured was NON-CARDIAC.

Life is short and hard, and we all die at the end, but sudden death – and near misses – wreak havoc with one’s sense of self.

And most of the above happened to people I know in very recent memory, so you can say I’ve been more than usually primed/skittish/on edge. I was chronically ill, but okay because I could write, albeit slowly.

Fear must be conquered over and over again

I’m going to keep this short (ha!), and just put right here this afternoon’s fear thoughts. Maybe they – or the process of getting them out – will resonate with someone:


FROM THE FEAR JOURNALS: May 4, 2017 at 1:40 PM

PTS takes what it takes – I had to spend some time on it because I’m not just snapping back as hoped for.

Am I really that afraid to try to write, given the lame effort I produced on drugs?

I am.

I am afraid of having lost it somehow during this bad half-year, or just the bad three months past.

Fear. Common ordinary fear.

Ouch!

I don’t have enough of a following for them to read my writing if it isn’t great.

Ouch!

I wouldn’t WANT them to read my writing if it isn’t great.

Ouch!

What has taken a hit is my self-image as a great writer.

Ouch.

And the sad part is that I would never do that to someone else. Ouch.

Ego/fear. Takes something like this to shake you up again, because that self-confidence is a trifle fragile.

Or because talent is. Even with hard work, great writers lose it. The Peter Blatty example – Dimiter, which I found unreadable – is always before me (though I should reread The Exorcist – maybe I was less discriminating when I found it so gripping. Ouch.).

Common ordinary fear.

Which is fixed by work. If you’re lucky.

And now I can try to do the work again, and I am immensely grateful.

Even though I haven’t succeeded yet, and am getting frantic.

AFTER-EFFECT: It is taking me a lot longer to get the brain to the functional stage the way I used to, and some days there is no click, and THAT is the after-effect: time delay.

THAT is the drugs and getting them out of my body and the damage there still is.

Additional slowness – to a system that was marginal at best.

I refuse to consider that it may take a year to get ‘me’ back.

But it may take a few more days for everything to come back, for the damage to be repaired.

And I’m still afraid that the residual effects might be permanent: lots more prep – and much less functional time.

And I’m FAR tireder than I think I SHOULD be.

Silly me: where do I think all this effort came from?

Even good stress – defending my choice – is exhausting. None of it is cost free to people like me.

There’s never been any slack, which is why I excoriate myself when I think I’ve wasted time, like today, by not just gritting my teeth and getting back to work. Made it worse When I know I can’t write with that low an energy level.

And [my assistant] is coming, and the other front patch needs weeding, and…


Things are what they are

And none of us expect sympathy or pity for whatever life throws at us and we are forced to handle.

I don’t.

This is part of dealing with the Post-medical-trauma-stress: realizing that it didn’t just add its own bits, but it REACTIVATED all the fears about myself and my writing that I had dealt with/shoved under a rock.

Because that’s what stress does.

It is so hard to let more days go by without getting anything any writing of fiction done.

At least I did my exercises in the morning, and I got out in the afternoon. Both may contribute to eventual improvement.

I’m still working on it. [I’d rest even more if I thought it would help.] Obstinate type.

Comments always welcome – thanks for all the support as I put myself back together.

The phenomenon of the one-book author

Image of single orange flower, half open; Text: If you only have ONE STORY, is it worth writing? Alicia Butcher EhrhardtTHIS IS A QUESTION FOR FICTION WRITERS

I have been, since last November, in a position I had not been in in years, and which I neither like nor have coped with particularly well: not being able to write due to major illness and health problems.

Which is kind of ironic, since I’ve been out of commission as a scientist, my true and original career (though I planned to write in retirement, and DAMN! here I am at retirement age and technically retired from a job I was forced to abandon in 1989) for almost THIRTY years. A real shame after all those years in grad school battling to get a degree in a man’s field, Nuclear Engineering, and thirteen good years at major US science labs. But Life does things like that to you, and you roll with the punches, or don’t make it.

So, not to belabor the point, I’ve been out of commission for half a year almost; and now, due to the medications prescribed by my doctors, am facing the very real possibility that my brain will not come back to me, that the cognitive dysfunction which has been a result of the FIVE medications recommended for me to take (and which I’m fighting), and the still head-shaking INCREASE in exhaustion which I didn’t think could get worse.

Yes, I know we all get old and eventually die, and some don’t get to become old first, and there is dementia lurking on the horizon, but at my age, I felt I still had a number of usable years left – until now. Now, I hope I have years left, but I’m starting to get seriously worried about what has happened to my brain to make it even LESS usable.

Ten Early Warning Signs for losing your mind to dementia

This one particularly scares me because I store it years ago, AND I CAN’T REMEMBER – OR FIND VIA GOOGLE – WHERE I GOT IT.

The signs are the same in many places, so I am apologizing in advance to the person whose particular phrasing of them I’m going to show you (please let me know if you are that person, and what you want me to do):

  • Memory loss for recent or new information – repeats self frequently
  • Difficulty doing familiar, but difficult tasks – managing money, medications, driving
  • Problems with word finding, mis-naming, or mis-understanding
  • Getting confused about time or place – getting lost while driving, missing several appointments
  • Worsening judgment – not thinking thing through like before
  • Difficulty problem solving or reasoning
  • Misplacing things – putting them in ‘odd places’
  • Changes in mood or behavior
  • Changes in typical personality
  • Loss of initiation – withdraws from normal patterns of activities and interests

It doesn’t say in this list, or the one a an Alzheimer’s site, that the person’s AWARENESS of their own increasing problems is or isn’t a risk factor; my personal experience was the ability to hope that my people who had this problem were NOT scared and living in a hell of knowing their minds were going, when it was obvious to all of us – probably including THEM.

Since being put on cardiac drugs starting in February of this year, I have had EVERY SINGLE ONE OF THESE EARLY SIGNS HAPPEN TO ME. REPEATEDLY. Sometimes I’m very aware of it, and other times have had to have it pointed out to me that I was not thinking clearly.

I am aware of NOT being myself

It’s pretty obvious.

And when I haven’t been able to write fiction, the one thing I do which exercises my creative brain for a few hours on a good day (assuming all the incantations and spells have been laid, and the careful management of the physical body with rest, food, fasting, pain meds from before, and caffeine), and this started to go on and on and on, I’ve gotten pretty scared.

It’s subtle – NOT being yourself. It includes so many little things you can try to ignore, such as having literal trouble forming a word before you speak it…

So now, rather than bore you with my mental decline…

I would like to examine the title phenomenon: the one-book author.

Where is the place in the pantheon of writers for the person who chooses to or is forced to write but one book during their lifetime?

We have a bunch of famous ones, such as Margaret Mitchell and Anne Frank and Harper Lee (yes, in spite of the abomination of GSAW, which I refuse to blame her for).

In many of these cases, the process took a very long time. The reason for those is that the writer had to learn how to write, and if you have ever tried this little exercise, you know that the first thing you have to overcome is the sparkling story in your brain, compared with what you are able to set in permanent form when you try, especially the first time.

The authors may simply have not wished to do that process again. Or found more interesting and exciting things to do. Or ran up against the world and critics and the nether regions of fame, and decided strongly never to do that again.

Some of them were no longer with us when their one book was available for purchase. John Kennedy Toole (I believe he only has A Confederacy of Dunces out, with a Pulitzer in fiction to his memory) committed suicide; his mother stubbornly kept nagging editors until one published his novel.

How does this affect the READING PUBLIC?

That’s the part in curious about, and it may have changed in these days of self-publishing AND self-promoting.

Single novels written by indies MAY SINK WITHOUT A TRACE.

The continuation of the writing career, a pickup in merchandising, readers discovering the writer and reading their backlog – all of these things are necessary for all but the VERY LUCKY INDIE who catches the eye of someone in just the right position with just the right book.

Many of our successful overnight indie wonders are no more overnight than persistent: they have been writing – and publishing – longer than I have been writing, but fame just found them. A couple go viral each year: in one year it was Darcie Chan and The Mill River Recluse – which she sold 600k of at 0.99. I don’t know what she wrote before that (it was advertised as a debut novel); after that, she was picked up by a publisher, her prices were raised, and I don’t think the following two books did anything like the first in sales. I like her success (though would not want to be picked up by a traditional publisher without having the terms very carefully vetted); the books aren’t my style (they have, like WAY too many books nowadays, a REALLY NASTY SECRET in the past).

But aside from Chan, I haven’t seen a book sell two million copies like The Goldfinch, which was hyped and marketed by big pub (also, not a debut novel, IIRC).

There is a very good reason sometimes

When the first book is not as good as it could be.

Indies fictioneers don’t usually have the means to push that first book; reasonable indies expect their career to pay for itself, more or less, as they go. There’s no point to pushing a first one, if the writer can’t repeat the process in a reasonable period (write, publish, promote the hell out of).

And the most important reason is usually lack of knowledge. An indie, like myself, who spent 15 years writing a book, trying more to finish it properly than market before it’s finished, may have READ about marketing techniques, but has not MARKETED a real book yet, and there’s a huge conceptual and executional chasm between the cliffs.

So, what does that mean for indies like me?

If my career ended with To Be Continued at the end of Pride’s Children PURGATORY, because MY brain never returns capable of writing fiction, what happens to that book? What happens to the story, the ONLY one I want to write until it is finished.

I have been sitting at my desk for upwards of five hours daily since April 8 – with the result of a few notes.

The sad part: I had learned what parts of my ‘process’ could be sped up, and was actually doing quite well writing the second book, NETHERWORLD. Well started, completely planned, and in possession of a ratty old first draft and knowledge of my changed. My plan was to take less than a year to do the next book, another year for the third.

Want to make God laugh? Tell Him your plans.

I’m a good Christian, and a realist: God know exactly what will happen to me, what I will choose in the future, when I will go Home to Him. I can’t change an iota of all that.

Sometimes in the past two months and a half, I would have been perfectly happy for Him to say, “Okay, pack your bags – you’re coming home!” It has been that bad. Many times.

Not my choice, but a realist says, “Yes, Lord,” and brings very little in those bags.

That would leave me with nothing else published, and an unfinished story – which I’m assuming would do the proverbial sinking, sitting on the Kindles of the few people who discovered it since late 2015 for a while – and mostly abandoned.

It hasn’t done that well since it came out – I have a hard time with various of the components.

Price is one – few people want to pay $8.99 for an indie ebook of 167K tightly woven words, regardless of the fact that it’s cheaper than two 80K $4.99 books, or three 55K $2.99 books, and they can get an eARC for free by just asking.

Cover is another – if I had $10 for each ‘change your cover’ suggestion, I’d have a nice little advertising budget.

People who expected a Romance are cutting that it is too long or too slow.

And most readers (mine do better than average) simply don’t review OR tell their friends OR gift a book they like. Sometimes I wonder if they’re feeling guilty that they got pulled in to such a thing about a disabled woman.

And, of course, the ads – have NOT hit my stride there.

So what will happen to PC? PC 1-and-only?

If this is it for me, or my brain, which are roughly equal in importance for me.

But mostly because there would be no more.

I dunno.

I think the famous ones like GWTW had a lot of push in their day FIRST, and then it slowly became apparent the author was not going to write a sequel.

The reason for this post:

Suppose all of that were true: no more of the trilogy, no more books by me, no more writing to push what I already have to justify having spent my entire FREE time during the past 17 years doing nothing else.

Would I care? Yes.

Would I feel I should have spent my time otherwise?

NOT ON YOUR LIFE.

I hope it doesn’t sink like a stone, but I still have it available next to my bed in the nursing home for as long as I’m alive, whether I can read it or not.

And if God gives me life, and a brain to live it with, I will keep going forward.

Otherwise, I’ll try to remember to write out a quick outline of the rest of the story, as my daughter has advised, for anyone curious. They can post it on PridesChildren.com when I’m not here any more.

Assuming I have enough brain to write it.

If you are kind, please pray the dementia is reversible.

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).

My morning walk through my Internet village

A pink-soled sneaker being tied onto a foot; Words: Every morning I take a walk and stop to say hi to all my Internet friendsSURFING? OR FREEDOM FOR PEOPLE WHO DON’T GET OUT MUCH?

What other people do so easily, would be impossible for me: I’m technically retired now, though the last 25 years of my working life were spent on disability, and I can’t just ‘go out for a walk’ like healthy people my age.

I’ve recently gotten to the place where I can walk more, but it isn’t easy or fast or convenient or unassisted, not like when I used to go out the front door, turn left (or right if I wanted to add an extra bit around the cul-de-sac), and just go, walk wherever I happened to decide, and come back when I’d had some exercise.

But I do something similar when I get on my computer in the mornings, and, while I’m waiting for the morning’s caffeine to decide if there are going to be working brain cells today, I walk around my Internet neighborhood – the sites on my navigation bar – and see what’s up.

Procrastinate first, except for the rare days when there’s something my limited brain can do in the writing department before it is warmed up. I’ve tried – nothing seems to work – so I’ve decided to enjoy my morning walk, do it as efficiently as possible, and not fret about the time wasted/spent. Angst is not helpful, so I don’t bother any more. And I almost never add any new stops to the navigation bar.

HOME COMPUTER: Email first – well Duh!

I check email several times a day, and make sure to deal with what I can asap, as friends write, and several newsletters show up with something new, and often a quick response saves much time and effort later.

Plus, as you can tell, I like to write back. Gets the brain moving and the fingers wiggling.

Sometimes I find responses I needed from missives I’ve sent out to friends or other sources, and know I’ll be able to move something forward.

Occasionally, I have to do something, such as go to the basement and read the numbers on the meter for the solar power system, near the first of the month. They can’t do their paperwork until they have my input, so it gets a high priority.

FIREFOX: First stop on the Internet are my own blogs

I refresh the page, and the thingy in the top right hand corner will tell me if I have visitors, and if they’ve commented. New comments on the blog always get first priority

First stop after 9AM – TPV; if much earlier, do this later

I stop by The Passive Voice for the morning publishing news (and several times more during the day because Passive Guy puts up five or six posts every day). It’s like a visit to a cafe where you get good commentary, and rude people aren’t tolerated. We mostly stay on topics related to publishing and books and such, but David has an interesting mind, and gets stuff from lots of places.

Extra points if posts have a comment at the bottom from our gracious, handsome, and intelligent host – his wry humor and delicate satire are things for joy.

People send him stuff. He is a good host, posting an excerpt – and a link to the original. He is careful not to ruin the original post, while giving you enough to decide if you’re going to visit it.

On most blogs, comments need supervision, and are often not worth the time to scan them; if you don’t read the comments on TPV – and subscribe so you get the late ones – you’re going to miss things. Useful things.

WU – ‘about the craft and business of fiction’

I stop by Writer Unboxed most mornings, at least to get a quick look at the topic and the post’s byline. I skip Flog a Pro – kind of hate the idea of people feeling they can freely trash work they couldn’t produce; mean-spirited and negative some times. Not me. Other bylines or topics I know I won’t respond to from the title or a bit of the post, I skip; otherwise, I read the post.

I consider whether there’s anything I’d like to add to the discussion (there’s usually a question or two at the end of the post as a prompt); I leave my little addition to world literature or my (usually different) take on the subject, read those of other people I recognize, and maybe pop back later; I like posters who bother to come back and join the discussion better, but not all of them have/take the time.

FB – for friends and support groups

You get out what you put in on FB. You are a contributing member of a community – or not. Since one group is a support groups for people I know have extremely limited energy, that group’s members get a pass – some can only afford to post when desperate, and we all respect that.

My group of friends is small, and I don’t sell or proselytize much – that’s not what friends are for. My blog posts automatically on my personal FB page; if there’s anything that the groups might find useful, I cross-post them on the group page. A little goes a long way.

I check out any friend requests – most are obvious spammers – easy to tell (and block permanently) if I take a peek at their page. I’ve even reached the point of checking with the ‘friends in common’ if a friend request is odd and unexpected in any way.

I have no author page – yet. It would be one more thing to maintain – maybe if it seems a good idea later.

CHROME: GR and my British friends

A daily stop, maybe several times, is a nice bunch of people on Goodreads in the UK Kindle group who have made me feel welcome. I’ve read enough British authors in my life to practically qualify on that alone. Occasionally there will be something in my inbox from a GR friend.

I usually save those for later response, but almost always read them right away.

The notifications function provides a quick way to keep track of the threads I comment on or read.

The comics – and Dear Abby

And I’ve had my bit of entertainment for the day; I have them set up for easy refreshing on the Chrome browser, and can update and read and pass on good ones to friends with a few minutes’ effort. Doesn’t that happen to you? A comic just makes you have to send it to a particular friend?

Extra points when the friend later emails back that it was especially appropriate or welcome.

The daily brain puzzles – measuring brain speed (if any)

Usually the last stop on my little trek, I set up a few hard sudokus, maybe do one or two, to gauge whether my brain is starting to work the way I need it to work for writing fiction.

I’m looking for a completion time below seven minutes; and I monitor, with a partial brain, how the math processing is going. I can literally feel it when I’m not tracking – I can still do them most of the time, but they feel like slogging through mud, and take forever. The CFS brain fog is clearly at work here; sometimes it won’t go away. I can work a bit, but it almost isn’t worth it without a brain. I’ll get ten minutes worth of writing done in three hours.

Yahoo news

If it makes it to Yahoo, I take a quick scan; other news items will show up in paper (The Economist and other magazines), or someone will boost them on FB, so this is really a desperate measure to find SOMETHING to read before I have to (want to/have to) get to work.

The end of the walk – home again, home again, higglety pen

After a final quick check of the emails, and possibly TPV depending on timing, and a superquick and usually pointless visit to Amazon’s pages that show book sales, I grit my metaphorical teeth and start up Freedom or Anti-Social to block the internet for my available writing time.

Then have chocolate protein shake, and take First Nap (sounds counterproductive, but isn’t – search for ‘mental dialysis’ posts), and when I wake up again and come back to the computer, the writing is sitting there ready to go, I’ve checked out that the whole world is okay until I have time to look again, and I don’t even think about all my friends for hours.

Turning into a routine makes it much more efficient than it used to be.

Keeps me sane.

And productive.

And connected – the most important part of all. My internet friends are REAL friends. I just maybe don’t really know how tall they are.


Thanks to Stencil for images I can create or edit.

Do you have a morning computer routine?

Vacation and chronic illness: the goal is survival

PB021370.JPG

A view from the boat at the Grand Palladium, Riviera Maya

WHAT IS THE GOAL OF VACATIONS?


***** Kindle Countdown Deal Amazon US Oct. 10-Oct. 18, $0.99, IN PROGRESS *****

Please visit Pride’s Children on Amazon for your copy at a buck if you don’t have one, and give them for presents! It’s an easy way to make a recommendation.


The chronically ill person desperately wants to be normal – because normal is so much more fun.

I can’t speak for those who have always been ill, because they don’t have the memory of being ‘normal.’ But I can remember, almost three decades ago now, what it was like to go on vacation for the express purpose of having fun, taking a break from daily life, getting a tan or a snow burn, doing more exciting things and far fewer of the regular ones…

This is my first morning back from our first vacation in over two years, so, as I haven’t been blogging for a couple of weeks now, I thought I’d take the opportunity to capture the thoughts that a week at the Riviera Maya inspire – because if there’s one thing different for someone barely holding it together in ‘regular life,’ it’s going on a real vacation.

In no particular order:

Getting there: Airplane, taxi, private car, boat, bus…

I have an irritating combination of Chronic Fatigue Syndrome and a major mobility impairment (I do not walk well for any length of time – working on it). I think I would be dealing better with the CFS if I could do as I used to, and get out for short walks on a regular basis, staying well within the energy requirements. And I know I would have deal infinitely better with the mobility if I had more energy.

But what is, is.

To start the trip, we had to get from home in New Jersey to JFK Airport (from where there are far more non-stop flights), which means I started the trip by trying to nap in the car as husband did all the two-hour drive. I remember being an equal partner in the driving – and, as we both age, it would be nice to be able to help. Instead, as you can probably imagine, just getting to the airport has used up most of the energy for the day already.

The wheelchair IS available (always a concern when pre-arranging things), and I’ve gotten over that hump: me not being my slow self is a benefit to my family – whatever the loss of face from being pushed around (and I still feel it after all these years!), the gains in speed are worth it. There can also be some benefits – we often go through a shortened line for security, and have (and need every second of) advance boarding on the plane. My walker, Sylvia, is there for me to lean on – but needs rolling with us, and is one more large thing to deal with at every stage. On the plus side, more than once her seat has been used to transport baggage.

Then just somehow find a way of sitting mostly in one position from boarding to landing, and managing to get at least an hour of actual sleep to restore some of that energy, and we’re at the Cancún international airport for the next part: gathering of the party. Which, since their plane has been mysteriously delayed, requires sitting at an outdoor restaurant with all our stuff for two more hours, until son and girlfriend arrive from Houston, instead of hooking up within ten minutes as originally planned.

Find and negotiate for transportation to the hotel. REMINDER: if you can pay for things with your credit card, your bank usually has a far better exchange rate than almost anything you can generate on the spot, so use it if you can. But the rest of the world is not the US, and you must be prepared to accept lower hotel or taxi exchange rate if all you have is cash. Mexico has ATMs which will give you local currency – if you can find one. The usual perils of travel apply.

Finally, another hour+, and we’re at the Grand Palladium. Checking in takes no more than the usual (three tries to get acceptable room for the Houston contingent), and we end up, finally, at the dinner buffet.

Getting around at the resort

The biggest problem for me is that we love this resort – hugest pools, wonderful beach, great dining – but there is NO way for me to get to most of the places I want to be without an enormous amount of walking (with my trusty walker, Sylvia). We knew that even before we went the first time: TripAdvisor mentions it, the map shows it, and it is a plus for most people (given the array of eating opportunities). They will send you a trolley if you request one, but it can only get you to approximately where you need to be – so most times I opted for just walking the shortest route.

I am trying to learn to walk again, and I’ve walked this past week probably more than in the previous six months, and it was all agonizing, and that’s about the best I can say about it. If my current experiments fail, or I get even slightly worse, the next step will be a wheelchair, and most often husband pushing, and I REALLY don’t want to get to that stage. I am not a small person, and he already has his own limitations and aging. It may force us to consider an easier – and smaller – vacation destination. For now, I just loaded up on the extra ibuprofen (don’t tell my pain specialist – he’d have a fit), and gritted my teeth.

We finally got into a rhythm where the rest of the family would go on ahead, and let me get there at my own pace (which now includes frequent stops to put Sylvia’s seat down and rest). They didn’t like it – love you, family! – but it did help because they could stand in line if necessary. And the critical part for me was that if I was walking with family, I pushed myself much too hard not to always be the laggard, which increased both pain and a horrible new feeling of breathlessness. By the end of the trip we’d worked out a reasonable combination. Adjusting expectations is crucial.

Conclusion: I could have used the hotel’s help a bit more often, but did about right IF they let me do it my slow way. For next time – think very hard ahead of time, and use the trolley more often, even if I have to wait for it, because energy expended in walking can’t be regained, while energy expended in waiting is far less. And the hotel was uniformly helpful – when asked. Must give up some of the do-it-myself pride – which is still, after all these years, hard for me.

Days of sun and pool and never leaving the resort worked for me

I encouraged husband and offspring and potential new family member to do what THEY wanted to do (the kids did a wonderful day at Xcaret snorkeling through THREE underground rivers), and husband took them sailing.

While we older folk established a chair on the beach or near the pool (never worried a minute about STUFF at this kind of a resort), everyone spent the days as they wanted to – the kids did a lot of snorkeling in the salt-water pool – and I spent most of my time in the water.

And not just lazing: I am counting on neuroplasticity and slowly building up whatever muscles I have (because there is still some nerve conduction going on – maybe 30%) to improve my walking. I had counted on the pool being the exact depth for exercises I can’t do at home. So a good half of the time in the pool was spent – in Paradise – doing exercises and retraining muscles and brain.

Don’t sweat what you can’t change

I just ignored the parts I couldn’t do (didn’t go sailing this time, and have still, after five trips there over the past decade, not made it into the salt-water pool), and enjoyed every minute of the rest.

One of the days had a rougher-than-usual sea, and I got a nasty scare getting into the ocean (bit of a tumble) AND out of it (pushed very hard to get out before the next wave, and ended up not being able to breathe for a bit), and I almost let that keep me out of the ocean. But it was back to its normal calm later, and I did get a wonderful session in the beautiful blue-green water.

Marred by my only sunscreen fail. Kiddies: wear your sunscreen. Reapply every couple of hours, regardless of whether you’ve been in water. Don’t forget covering EVERY SINGLE AREA (I missed my lower arms ONE TIME and have spent the next few days slathering with green aloe gel). And let the stuff sink in as recommended. Wear a shirt part of the time even if you look like a dork. Tropical sun goes through less absorbing atmosphere, and will GET YOU. I never missed before, never had a problem – and it got me this time.

The cost to a chronically-ill person

Even in lowest possible energy-expenditure mode, vacations are a stretch. I never actually managed to unpack, used the same clothes more times than I had planned, didn’t find the after-sun gel until days into the trip, didn’t find my critical meds on the way home until it was almost too late…

The small things accumulated steadily.

I ate too much of the wrong things – half of the time from simple exhaustion (okay, the rest of the time from simple greed). Once I go down that path – eating more carbs than I can handle – it takes at least four days of eating very carefully to reverse the process. And there was no way to muster that energy in a situation where the level of exhaustion was very close to the edge, all the time.

The weeks of planning and packing took their toll (but now I have bathing suits!). I lost untold writing time because the arrangements had to be made with my good time (and even then I almost forgot to get us seat assignments for the trip there).

I lost track of where I am in writing NETHERWORLD, and will be doing a complete reset.

My guess: it will cost me another week just coping with the aftermath, and that if I’m lucky.

Would you do it again?

As often as possible.

Because I still can, and a day will come when I can’t.

Because the time with two of my three kids was priceless – and next time I hope we’re all together for the ‘annual family vacation.’

Because I have the feeling that a week of NOT stressing over what I couldn’t control, and being in basic survival mode (in a beautiful place, with food cooked by someone else), plus three of us in the room going to bed at a reasonable hour because we were exhausted (all of us), whether from fun or making it through, is a good thing (I’ve been going to bed WAY too late).

Because the soul needs beauty, and seeing coatis and mapaches and agoutis and iguanas and pelicans and flamingos in their natural habitat was wonderful (wish the idiot tourists would read the sign that says Don’t Feed the Animals Because it Kills Them).

I hope this brings me back to writing renewed.

And because it was, for all the effort and increased pain, fun.

We ill folk can get into small loops where pain and exhaustion are minimized – but so is everything else. Including fun.


***** Kindle Countdown Deal Amazon US Oct. 10-Oct. 18, $0.99, IN PROGRESS *****

Please visit Pride’s Children on Amazon for your copy at a buck if you don’t have one, and give them for presents! It’s an easy way to make a recommendation.


The same person who writes the blog posts writes the fiction.

Share your challenges with ‘vacations.’

Is my prose too purple, are my metaphors too wild?

Is my prose me?

Too purple? Are my metaphors wild? Or barely leashed? Or me, writing in passion?

Could anyone else write them? Then no, it is NOT too purple.
It isn’t purple at all.

Point is, it doesn’t matter if metaphors carry all the truth, only that they carry some truth. No analogy is perfect – they all fall apart when poked too hard – but that’s not why we use them. We use them for the gut feeling of rightness that comes from explaining the unknown in terms of something we DO understand, even if we grasp it only for that moment.

Writers are unique, one of a weird kind

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