Tag Archives: self-awareness

May 12 – ME/CFS Awareness Day – again

Picture of dog with its tongue out. Text: No treats for me. ME/CFS has stolen all my energy. Alicia Butcher Ehrhardt

AND AGAIN THERE ISN’T ENOUGH ENERGY TO GO

I am represented by my shoes. Thanks to the people who take the shoes, label them, place them where people stop and look and ask: my shoes represent one of the #MillionsMissing. Me.

I am represented by my fiction. Specifically, ALL my royalties for May 2018 will go to support #MEAction‘s fundraiser – because they are being activists for all of us who have ME/CFS and need medical recognition, research, and training. I’m not delusional, trust me. I’m just sick. Lots of us are. You can ignore us – and make us even more miserable than we already are. But you can’t make us go away and not be sick, and, like AIDS patients before us, we are holding you accountable for this misery – because those wo do nothing when they could are enablers of the misery.

I am represented by my blogs. This one, and Pride’s Children’s blog – where there is a new post! About me learning to use a new marketing book which may help me find the people who will read and love and be waiting for the next book in the trilogy (coming – as fast as I possibly can – this year, or next at the latest). A curious thing (to me) has been a whole bunch of people signing up to follow it and liking the posts – without ever going to that site. I suspect the word ‘marketing’ kicked some bots into gear, but traffic is traffic. It’s difficult for me to market when the people who have left 5* reviews range from young women in their 20s to older men in their 80s. I’m greedy. I want more of you.

I am represented by my Patreon, where at least one lovely patron and I are having very interesting discussions – and the patrons get to read Pride’s Children: NETHERWORLD before anyone else. Curious? Drop by and read the free public posts – and ask yourself if you can REALLY wait another year…

I’m represented by my Facebook page, which is for RL friends and family, and a few extras (it’s not all that exciting, though I have boosted a few posts).

But I’m not represented by me. 😦 Because, as happened today, the spoons went to something silly and necessary that jumped to the top of the To Do list right during one of my four naps, and had to be done that minute. Today’s energy, and tomorrow’s, are used up already. And Sunday, I already know I won’t be able to go sing – there is nothing in the energy bank to allow me to do what I want to do. And I know perfectly well I’ll make myself much worse if I foolishly try. No problem – I can do it, go sing – but the cost will be days of staring at the wall, and I can’t afford them.

Thanks to all who are doing something and going to an event for May 12, ME/CFS Awareness Day – again, since we’re still not getting anywhere, and not only are we still sick, but new ones join us every day. I’ll be there in spirit. Spirits are invisible.

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Living in a house for strangers

iPhone, keyboard, notebook on white background. Text: White carpets? Be careful what you start, because you only THINK you're in control. Alicia Butcher Ehrhardt

MY NEW JOB: LIVING WITH WHITE CARPETS

I have acquired a new job: living in a house with white carpets.

We made one of the two choices offered:

  1. Sell the house after cleaning it up and fixing the obvious and/or necessary problems, or
  2. Update the house as much as possible before putting it on the market.

The easy choice: sell more or less as is

Clean things up.

Touch up all the paint – I still have the cans of good quality Benjamin Moore paint in the basement, and a card file with a paint sample for each, and a list of which rooms are painted/trimmed in that color.

Have the carpets cleaned.

Dejunk.

Add a credit to the house price for new flooring to be chosen by the new owners to their taste – and which it would be so much simpler to have installed when the house is empty between us leaving and them moving in.

Put on market.

Live in your own home, only tidier, until it sells.

The hard and expensive choice: upgrades

The lovely staging ladies we hired and the husband decided to go with alternative #2.

They say (and I hope they are right!) that homes that look dated don’t sell – because the homebuyers of today lack the imagination to see their own possessions in a house decorated by and full of the belongings of – someone else.

Our real estate agent said that the division among buyers was about 50/50, and we should do what we wanted to. That many people who might buy a four bedroom house were locals moving up, and would be buying for the school district and for more room for a growing family.

But she seems excited that the upgrades are being done, and is hopeful they will help sell the house more quickly.

Houses that don’t sell can hold up future plans

Which puts us in an interesting position.

Because we are looking for the best fit in a CCRC (continuing care retirement community), and will go to a lot of trouble to pick a specific one (or small number thereof) which will suit us, and they tend to be close to full capacity, we may be on a waiting list for a while.

This means 1) we need to get on that waiting list asap, and 2) we may be living like gypsies in a caravan, with this one sold, and no place to go for sure, for an indefinite amount of time.

After all our planning!

The supposedly accepted method is to wait until they offer you the place you want at the CCRC of your choice, and THEN put your house on the market and sell it in the typical 60-90 days it takes for the CCRC to have the unit you are offered ready for habitation.

The cart has gotten before the horse

On the theory that even if we were doing the ‘accepted method,’ we might as well get started on the known necessary repairs, and we did – but I never expected them to turn us out of our home, and to be living in a house – sans window coverings because the painter wants them gone and houses show better without them (!) – for an indefinite time, with NO unit offered to us for us to move to.

Not exactly sure how it has happened.

Part of it was the wish to get the house to market during the supposed spring selling time frame (which we will have missed).

Another, other houses staying on the market for a long time.

The third – get other people involved, when the one of the homeowners has very little energy and really needs help – and the juggernaut takes hold and roles on.

And now everything we own is in boxes in the basement – to get it out of the way of the carpet installers (here all day yesterday), the kitchen/dining flooring installers (soon), and the painter (thankfully scheduled while we will be away).

Consequences

We’ll be living, for an indeterminate amount of time (hope it isn’t long), in a house with no shades.

And white carpets.

And white walls.

And everyone agreeing that it is much harder to get stains out of white carpets!

Learn from me: you can’t control the juggernaut, and you keep poking away at the things you can control (changing the carpets) before you realize what you’ve done.


Corollary to Murphy’s Law: Anything that can go wrong will, and will cause a lot more work.


Another reminder to do these things sooner rather than later if you want to have any choice in the matter. I can’t imagine doing this ten years from now.


Sympathy and stories gratefully accepted.


 

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.


 

Give us this day our daily pain

Bromeliad in green and red. Text: Any purpose to daily pain? Alicia Butcher Ehrhardt

WORTH OFFERING UP IF YOU’D GET RID OF IT?

Some days, if I squint at the daily/morning skeletal pain and muscle pain, I can call it the result of not stretching, or even ‘stiffness’ or ‘mild joint pain.’ synovial fluid in the joints needs to get moving, and the joints themselves have adhesions – everything’s, scientifically speaking, gummy.

Some days it’s worse than others. I don’t like it, but I can handle it.

But this morning, while resting in extension (like the Sphinx) on the floor, I was marveling that I’d never noticed that ‘Give us this day our daily bread’ from the Our Father has one of those little cross-linguistic glitches – the word for bread in French is pain.

No rhyme or logic to it, just a noticing.

The saints offered their pain up.

I’m not saintly or heroic, but I can do the same thing, try to handle every day with as little medicine for pain as possible (to ease the load on liver and kidneys in getting rid of the byproducts). I can ignore some of it, and a special seat cushion takes the brunt off, but there is usually enough left to be, well, significant. Too bad, and I say, “The heck with it!” and try to find something that won’t leave me groggy but will reset the brain.

Above that level, there is the way it takes over, and you do nothing else until stretching, isometrics, yoga, and chemicals are allowed, even if I end up not being able to think.

I feel for my friends who live with a lot more than I do – I had that experience as a side-effect of the various cardiac meds: every single one of them raised the pain to the I can’t think of anything else because I’m dealing with pain level. Glad the new cardiologist decided the benefits, if any, weren’t worth the consequences. Not that I would take them now, but it does help to have at least one doctor who’s okay with that; really reduces the stress.

I don’t understand offering pain up.

I’m not good at those theological bits. I don’t believe God gives other people pain or suffering that is waiting for me to offer my pain to be removed. But pain does teach you a lot about self-reliance, and getting help, and the limits of what you can take and do. Many people reduce or ignore what others magnify. I don’t see the point in taking on more just so you could offer up more. Seems like there are no good limits on that.

I do offer up acceptance and patience and such. I don’t ask Why me? because the answer is Why not me? if there’s going to be any at all. Not often, anyway.

I’m scared it will escalate – and I won’t be able to do enough to ameliorate it to the bearable level. I don’t think I’ll get rid of it any more – it’s too constant a companion.

I’m a wuss: I offer it up, but will do everything possible to get rid of it – at the same time.

A memory of GUI Easter eggs

colorful blank cards, with three colored pencils, and the words: Where's an Easter egg when you need one? Alicia Butcher EhrhardtMEMORY TRIGGERS

HAPPY EASTER – to those who celebrate the holiday religiously, and HAPPY PASSOVER to my Jewish friends.

As a blogger, lately I am the most erratic of correspondents. I am simply overwhelmed by the enormous lists of things that keep getting added to daily, often by things that insist on queue-jumping, and being taken care of FIRST. Me, me, ME!

The passport dilemma

On Thursday evening my daughter casually mentioned that she had just received her renewed passport, because it expired this May, and the family has plans for a vacation in May. As I congratulated her on her foresight, for some unknown reason I said, “I’d better check mine,” even though it turns out we’re not leaving the country.

BUT airlines always want you to show them ‘government-issued photo ID’ before they let you on a plane, and I have only two forms of that, my driver’s license and my passport.

So I checked – and, it turned out, we had BOTH applied for our passports together, ten years ago when she was 16, and mine was expiring in May, TOO. Funny how that works.

So panic set in, because the process takes 4-6 weeks FROM THE TIME THEY RECEIVE YOUR APPLICATION. Yeah, I can count. Late May is barely days after those 6 weeks IF I get myself in gear and get that application in FRIDAY.

Those who know me also know that leaving the house is a big deal, because of all the spoon-using steps it requires: Getting the brain on. Taking a nap. Getting dressed. Filling out paperwork on the web on the government website (’nuff said). Getting a photograph of the appropriate quality (thanks CVS). Getting a Priority Mail envelope ready from among my office supplies. Remembering to take the stapler to attach the photo. Driving to two different places.

These are steps healthy normal people take without a second thought, adding it to their list of errands for the day. For me, this is Hannibal over the Alps.

All accomplished. Home. Damp the adrenaline. Stare at the wall for the rest of the day.

The driver’s license.

The next day, Saturday, the husband brings up the form which the State of New Jersey, in its infinite wisdom, seeking to remove the people who MISUSE handicapped license plates and placards from their lists, forces the people who really need them to do MORE PAPERWORK, including getting a doctor certification.

I need this. I look up the paperwork, and navigate a DIFFERENT government site, start up the form, and get to the place where it wants to know when my driver’s license expires. This is not information I carry in my head, since I’ve been renewing by mail for years, so I look at the thing, realize it is expiring this very last day of March 2018. Aargh!

It is almost a comical repeat of the PREVIOUS day’s excursion (I normally try to leave the house no more than once or twice a week, and reserve one for singing at church. This is Easter week.)

It turn out the spouse (who does the paperwork since he retired) has been meaning to get to this. We BOTH have licenses that expire this very day. Oh, joy!

I’ll spare you the details, except that they include getting documents out of the safe to satisfy the state of NJ that we actually exist and live where we say we do (to be safe I bring every document we have), we scramble to get there after I figure out that, even though the DMV in NJ is CLOSED on Good Friday, it is actually open on the Saturday between Good Friday and Easter Sunday (go figure), and we have until 1PM. Sort of.

I frantically try to find something that proves the DMV office is OPEN, and hit on the little camera they have for the inspection lines! Which has a time stamp of NOW, and shows cars in line. They’re open!

We get there.

The line snakes out of the building and halfway down the block.

Thank God – and all those who fought for them – there are handicapped parking spots right by the door, so I can sit in the car while the husband stands in line, and finish filling out the paperwork, and get everything ready for inside, so as not to hold up the process.

A kind official, seeing me sitting in my walker, moves us ahead a few spaces.

We are out of there with brand new licenses, good for four years (we’re probably moving to a different state THIS year), and a whole host of papers to put back in the safe. But I don’t have to drive to church on Easter weekend with an expired license, and all I have to do is make sure the insurance cards – which have been sitting in the Master’s piles since DECEMBER – get into the cars before we drive to church.

And the Easter egg of the title?

I remember the first time I saw an Apple II something with a graphical user interface – and a mouse! – in the Apple store in the Princeton Shopping Center while trying to help a writer friend of my grandparents (Aaron ‘Rod’ Marc Stein, author of 115 novels) choose his FIRST computer.

It was as if I had found my soulmate. I gently ignored the salesperson (who was having a hard time explaining everything), and used MacPaint on the demo computer, with the mouse letting me size an oval, and add jagged and wavy lines across the oval to separate into sections, sections which I filled with the patterns available, to create a quite decent EASTER EGG. I can still feel the rush!

I wanted to find an Easter egg picture at Stencil.com, but inexplicably for this time of year, couldn’t among the free images for the month.

You’ll have to use your imagination. I seem to have lost MacPaint somewhere in the past many Mac years. Created in an instant by a novice, it was a thing of beauty.

I will be dead meat tomorrow.

So be it. We’re singing for the 4:30 Easter Mass at the Princeton U. chapel, and I wasn’t able to drive in for Holy Thursday, Good Friday, or the Easter Vigil last night (have to be in semi-decent shape to sing, and can’t do nights any more), and I’m not about to miss today. So off to First Nap, then lunch, then Second Nap, and the husband is driving, which will save energy.

Tomorrow (and the rest of today) I will be useless, but that’s my life.

Too bad we have to pick a vacation hotel asap.

Have a wonderful day. Pray for me. And how was YOUR Easter and Passover?

Does your character make readers uncomfortable?

WHAT CHARACTERS MAKE READERS SQUIRM?

When I set out to tell the story of Pride’s Children, I was originally driven by a sense of the unfairness of society toward those who have most need of its kindness.

Specifically, your DISABLED character?

There are two USUAL ways to deal with disability in a character: as a decoration or as a problem.

The first – a ‘feature’ of a character – gets mentioned every once in a while, but doesn’t seem to stop the character from doing most of the things ‘normal’ able people do. And it mostly leads that character to be a secondary character, a sidekick, the ‘friend in the wheelchair.’

The second leads to ‘inspiration p0rn’ (avoiding search engine problems here), and the solving of the ‘problem’ consumes the space dedicated to the story, with inspirational results – problem solved – or, sometimes, the character’s death (in a disturbing trend, by suicide while making life easier for those left behind).

Ignore the fact that suicide has a horrible effect on the people left behind. Most of us know of someone close to whom that has happened, and know they would do almost anything if they could go back in time and help.

Disabilities in real life

Disabilities are far more abundant than people think. If you count all disabilities – and I do, of course – estimates run over 20%. Don’t forget the invisible ones: FM, mental health issues, pain, CFS, non-visible genetic ‘abnormalities,’ a thousand things that make life difficult for the disabled person, but generate wrath in observers who watch them use the handicap parking space. Don’t forget old age and its common memory and mobility problems.

The counting is made difficult because of a human tendency to hide problems if it is at all possible, so you will not be ‘different’ or ‘other,’ and attract unwanted attention. Presumably there was some evolutionary benefit to getting rid of tribe members who would slow you down when your tribe was in the hunter/gatherer phase (a rather long time ago).

We ‘pass’ for normal/able as long as we possibly can, which also makes us suddenly appear very disabled when we can’t pretend any more.

Animals do it, too – everyone knows of a pet who didn’t let its owner know something was wrong until it was far too late to help. Wild animals do it so as not to appear vulnerable, as the weak and the sick are noted as easy prey.

But there is a different way for a writer: reality

I have taken the step of writing a disabled MAIN character, with a significant disability, which she ignores as much as possible, and bows to when inevitable.

For this disabled character, writing is a job – and she’s been successful at it, very slowly – and by staying hidden from the world.

An Amazon reviewer:

…while much of the plot centers on the cautious romance, Pride’s Children is also about a writer’s way of interacting with the world, living with a chronic condition (CFS – … I realized that I couldn’t think of any book I’d read, recently, involving a character with a disability or chronic illness – a significant hole in terms of diversity), and the struggle to remain balanced and kind when new people and routines enter one’s carefully-ordered sanctuary…

Disability is a learning experience

Those who are or become disabled have a steep learning curve: everything is harder. Moving, learning, thinking, being independent, even making new friends – all these are more difficult the farther a character is from the norm.

And the effects are interwoven: difficulty reading means trouble holding a job, getting to that job on public transportation or by learning to drive. No disability is purely one thing you cannot do.

There are few disabled characters in fiction (which is why they stand out) because writing them is extra effort. It’s easier to write about kickass heroes and heroines who tough it out through thick and thin and keep on ticking.

Just tonight we watched, in the same show, a character get stabbed in the back by an enormous kitchen knife embedded at least four inches by the blood shown carefully on the blade when it was pulled out by the stabbed character, who then went on to limp a bit while he walked around, interacted, and finally was not shot by the police detective – and who survived with no visible effects by a short time afterward; and a character poked at in the stomach by a little knife who died instantly. Neither of these seemed at all realistic – but the plot required one survive to talk and talk, and the other to be removed quickly from the scene.

In the same way, disability in fiction is mentioned when necessary to make a quick plot point – but not there pervasively.

FICTION = EMPATHY

I have written about how properly-constructed fiction is uniquely helpful in creating empathy in humans because it allows them to live alongside a character the life affected by the choices the author has made (type ’empathy’ into my search box).

They do, however, have to read said fiction, which means it has to be surrounded by the best entertainment the writer can provide.

I’m not surprised there aren’t more disabled characters, but I’m disappointed that indie isn’t more of a place where, since the big publishers are not supervising the product, there are more disabled, diverse, and simply ‘different’ characters and stories.

But there is that pesky thing about having to write well to sneak the empathy bits in under the radar. It takes more space, more words, more time.

It is MUCH harder to market.

I still think it’s worth it.

Do disabled characters make you squirm?

Is the gift worth your LIFE?

ONLY IF YOU HAVE TO

I wake up angry too many days.

Then I spend time getting myself at least back to neutral, because I live with other people, and it isn’t fair to them to have to put up with me in that mood, unless I have no other choice, and we already know I have a choice, because I have used that choice successfully every day for many years now: figure out how to, today, and get over yourself.

Every day I berate myself

Because I don’t get to work sooner.

I sit at my computer, and end up checking out whether anything has changed in the world since I forced myself to go to bed last night. Now that we have online subscriptions to the Washington Post and The New York Times, I do a quick flip through the headlined new articles, to see if anything needs my attention.

I remember the comic (xkcd, I believe) about how someone can’t go to bed because the internet is broken.

I know it’s partly physical: for some reason probably related to illness, the brain comes on slowly, and usually doesn’t really focus on anything mentally challenging until after first nap. That baffles me, and scares me, because I have to drag myself into that first nap, too, always convinced before I do so that it won’t help, that if I could just force myself through, block the internet, START working I would now be fine for the rest of the day, and I’d get everything done which never gets done.

Every day I test out my mental speed by doing hard sudokus: under about 6:30 minutes, I can probably do something useful with a small effort; over that, and I can’t usually write, and, worse, make mistakes of epic proportions (luckily Scrivener has snapshots and I do backups erratically but so far successfully). Those scare me – when it takes you a month to write a scene exactly the way you want it, and you think you have deleted it, well, it’s not a pretty feeling.

Nothing helps until somehow

The process starts up by itself, if it’s going to that day.

Many days it doesn’t – and I am helpless to understand why. Because it seems that other, equally stressed days, work.

I laugh when I see people suggest taking days off: it takes me so long to get back to where I was when I’m forced by Life to do something else for a few days that I am pretty sure I won’t make it back to writing ever.

My brain is on instructions to at least try every day, and, indeed, I have no idea what I’d do with a day taken off deliberately from writing.

Back to the ‘gift’ I’m writing about

And that gift IS writing.

Not that I have any choice in the matter, it seems, but the writing, as it is now, is the result of who I’ve become.

And that’s the question: if I had to choose, and I had the Hobson’s choice of writing what I do and being sick, or neither, would I value what I’m writing enough to choose illness if that were its price?

Is one single story – if that’s all I manage – worth a life?

Is LoTR worth Tolkien’s life, GWTW Margaret Mitchell’s? And why classify myself with them (and neither was ill). What about ‘Barbie Takes Manhattan’? Or ‘Bridget Jones’ Diary’? Or ‘Harry the Cat’?

The choice is an illusion

I have children and a husband – they come first.

And, as soon as they don’t need me this instant, I try again to focus.

I took my nap, am more awake (though sudoku still says well over 7 min.), and I come back to the same question: is this worth writing? Is it worth my life? I’m not sure what the answer is, but it certainly is what I want to do with my life, with the energy I get, with the time I spend/waste every day.

I didn’t make this choice – it chose me. Somehow. Like the other gifts in my life, I’ve found myself nose deep in the pool whether I liked it or not.

By standing on tiptoe, I manage not to drown. And then another day comes, and another task, and I find myself, on the good days, inside my head walking Kary and Andrew through an exchange, planning exactly how Bianca will take the next step, knowing what is coming, but not exactly how the words will play out yet.

And wishing I could speed it up.

What did you get for Christmas?

The same old thing.

I don’t want a pony.

But I want this. And if this is the price, yes, bring it on.

Hope you got what you wanted.


 

Making do with everything you’ve got

TODAY IS MY DAY

And I wasn’t even aware of it until I read one of my favorite bloggers, Dave Hingsburger, talking, as he does most days about a little story of people with a disability running into ‘normals.’

My random thoughts about my day

Even in one of my favorite tales, H. G. Wells’ The Time Machine, which I’ve talked about before, in a highly dysfunctional future society which manages to continue working somehow, and where characteristics have split into the industrious but subterranean Morlocks (who keep the world working but look like trolls), and the fragile beautiful Eloi (who basically do nothing useful but tug at the Traveller’s sympathies because they are scared), there are no disabled people.

Who we are

We get ignored a lot. But worse than that, we get looked down on. We get blamed for sucking up resources and money.

Periodically someone suggests just getting rid of us all (this is called eugenics: from Wikipedia, ‘a set of beliefs and practices that aims at improving the genetic quality of a human population’).

Please do try to remember that Dr. Stephen Hawking is disabled.

We are everyone else

Do please also try to remember that humans are fragile, and each of us is one second from not being at all, and one second from becoming one of the despised disabled – and in need of all those services they considered too costly before one of them needed them.

We want to work if we can

Some of us can. Some of us try to support ourselves by our own labors (I’m not in that category; I supported myself because I had disability insurance, something everyone should consider as it is 5 times more likely to become disabled than to die during the ‘working years’).

Some of us can’t. Luck of the draw. Chaos theory and an automobile heading toward us one inch to the right (ask novelist Stephen King; or better still, read the end of On Writing, where he has detailed how a careless driver nearly removed him from your list of best-selling authors).

Some disabled people are capable of producing great work; some are capable of producing a different kind and level of work. But most of us take longer, sometimes a great deal longer, to produce that work. Slow brains or bodies make it a lot harder.

Personally, I think those who keep trying anyway – against the disdain and rudeness and downright hatred they might encounter in public spaces (yeah, that kid with Down Syndrome clearing your table at the mall is, how lovely, a target for teens who think they are somehow responsible for their own wonderfulness), are demonstrating how important it is for us as humans to contribute to our society if we can.

And yes, I’m one of those, so it does sound like I’m tooting my own horn, but today is my day, so I may be permitted a small ‘beep.’

And, of course, we are your brothers, sisters, parents, children, neighbors…

Who of us does not know someone in this category?

And which of us gets through life without?

Please celebrate with me.

We’re not different. So would the world kindly stop treating us that way?

And, if it pleases you, buy our work. It might even be created to much higher standards than you think (hence the title of this post) because it costs everything we have. Yes, you are permitted to make me go viral if you like my fiction, and yes, I am working very hard (and incredibly slowly so as to keep to those standards) on Pride’s Children: NETHERWORLD.

Those who can support themselves by working would really like to do that. And those who can’t will be supported by our taxes, too. I’m good with that.

Please ignore the slightly old-fashioned tone: I have been reading Miss Manners.


INTERNATIONAL DAY OF PERSONS WITH DISABILITIES

Sunday, December 3, 2017


 

 

 

My funny 2017 Thanksgiving Day story

THE CLUELESS WRITER STORIES

The only excuse for this is that I’m pretty isolated, the kids are too far away for travel and for various reasons we two just don’t ‘do’ Thanksgiving any more (except that husband has opted to have me make his traditional pizza – I get the crust ready, he piles on everything he loves).

Out of the blue

My dear friend Sandy called this morning, to invite me out for lunch for my birthday. It’s a tradition we’ve had for a long time. As she has moved from New Jersey to Vermont (though her youngest is still here), it is an unexpected pleasure because she is here to celebrate the day at her old home.

I was delighted, and we quickly agreed on a time and place. We eschewed our old ‘writing partners’ traditional restaurant because, the last couple of times we’d been there, we both agreed quality had dropped.

I enthusiastically agreed to The Cheesecake Factory. They’re a bit noisy, more at dinnertime though lunch should be okay, but their food is good and has a great variety, and they have low carb cheesecake!

Write it down, Alicia!

I write the information on a Post It!, being as I am getting forgetful and don’t want to make her wait tomorrow, even changing the refill on the gel pen to make sure the note was nice and dark. I stick the note where I can’t possibly not see it several times today, which is what I need for it to penetrate.

I’m sitting here at the computer wasting time, as I do in the mornings, thinking about the posts I’ve read this morning, and the general concept of being thankful for what you have, and grateful in general. I turn to erase the message on the answering machine which is blinking in my peripheral vision’s range.

Suddenly, the slow-moving cogs in my brain finally do something. I stare at the note. I start laughing.

I call Sandy, startling her (I’m sure she’s probably up to her ears in cooking or something), and say, “Do you realize what day tomorrow is?”

She said no, and I pointed out it will be Black Friday. She still doesn’t get it. I said The Cheesecake Factory is in QUAKERBRIDGE MALL.

We agree neither of us do Black Friday – and I said, “But other people do.”

Disaster averted

We had a good laugh, picked a different place far from any shopping venues tomorrow, and will have a great lunch catching up.

I can only imagine what it would have been like if clueless me had gotten into the car and tried to drive to the Mall tomorrow for lunch, late as I usually am at that point.

I hope ONE of us would have noticed by then.

Happy Thanksgiving, my friends.

Me, I’m just grateful I’ve received so many things today to make me laugh.

The writer comes from somewhere

Ernest and Pepita Butcher

THE BEST START ON LIFE YOU COULD GET

Life has been biting at my ankles this year, and I’m almost at the point of telling you you can have 2017. I don’t want it.

Mother, 94, has gone to Heaven to be with Daddy, who died three years ago at 91. We  imagine them dancing together again. We all thought they would be here forever, even if diminished from their prime of being one of the most vital and alive couples we ever knew.

My sisters and I, growing up in Mexico City, agreed many times that they were the best parents we knew, and we wouldn’t trade them for anybody else’s parents.

So many stories we can tell, and will remind each other of, but I’m sure everyone has their own family stories, and I can’t do them justice. But they SHOWED us what love is.

And we hope we are passing it on.

The okapi flies the empty nest

Young person with backpack from behind. Words: When it's time to leave home. Alicia Butcher Ehrhardt

GOOD PARENTS PREPARE FOREVER TO LET GO

The nest is emptying – and I don’t want it to and I do.

The last child, Daughter R, will be back Sunday, but she’s leaving – for good – and I’m weepy.

Two states and a four hours long car trip will separate us.

She moves from the friends she’s created here to the ones near her college in Troy, NY.

She’ll be fine – but I will miss the heck out of her, even as I know she has to do this, and she’s happy.

Her room is a mess, my assistant is probably not going to be available to help, chinchilla Gizzy’s room is still full – drawers and closet and shelves.

There is still plenty of her STUFF – garage, basement, two bedrooms, even kitchen – but the decision on both sides is that it will all be gone soon.

Home will be no more

So we can sell this house we’ve been in since 1981 – and move on ourselves.

She won’t live in this house any more – and I, who can’t even get around in it or the garden any more – can’t stand the idea.

So much unfinished stuff when the last child leaves:

movies
scrapbooks
pictures
and a whole life.

Her two older brothers have long taken their belongings with them – there are few reminders of their house-filling stuff.

Only a trace remains of the homeschooling years when I gave them all what CFS had left me.

Today was the day she chose; she’s sticking to it

She is better (except she has a cold today) than she’s been in a long while. She packed most of her stuff – except for the desk – herself into the car. MY car. We haven’t worked out that part yet.

She is going to a house with kittens – and will have to worry about allergies and breathing and sleeping.

She is a grownup.

I don’t know what I am any more, and it scares me some. For the longest time I’ve been her accomplice and helper for the sleep stuff – and now that’s her problem and not mine.

I don’t think she’s finished – no one really ever is, but there is so much she never found time to listen to that I could have taught her.

In many things, she has far surpassed anything I have done.

‘Home as prison.’

She’s been in a prison, benevolent, but still caged. I didn’t want to go home when I was her, but I was the oldest, and Mother was very busy with the rest. I didn’t want to be depended on to help her.

Gizzy is mine every night now – after all the help R gave me these past two years and more – and we never got a video of Gizzy following R’s instructions. Put it on list – she’ll be back Sunday. For another load. She has too much stuff.

I’ve been here, conscious of her, since she came home two years ago, defeated by the unknown sleep problem – and she goes now to where she should have been then. I don’t know if we COULD have solved it earlier – maybe a bit, but not significantly.

We did everything we were supposed to do, regular sleep doctors, psychiatrists, therapists – and it didn’t work.

I’ve written about what it took to find out what was wrong

Because it was never those things: it was a rare disease (Non-24 Sleep/Wake Disorder, one of the circadian rhythm disorders like shift work disorder but not quite), and not a mental problem or a lack of motivation.

Dealing with Non-24 SWD

She knows how to reset now, supposedly, and what to do, most of the time.

On vacation she was up – unheard of – before 10AM every day, earlier other days. Lots of exercise, lots of sun – and usually falling asleep before midnight.

She needs ten hours sleep – the far range of ‘normal’; her rotating sleep/wake schedule is more stable; but unlike most humans, she will have to monitor it and defeat it every day.

With a beta blocker which turns off melatonin production during the day, and a dose of melatonin at night to get it started up again. A small dose which should be taken four hours before bedtime.

But sometimes isn’t, for a very responsible reason: she doesn’t want to be in the position of driving after taking it.

Now she has to manage it without backup from parents – but depending on friends, which isn’t a bad way to go when you have no girl-siblings and a lot of girl-friends.

I have had a child in the house for thirty+ years. Now what do I do?

I want to be her. Free. Starting life. With no responsibilities for others yet.

I want to be free to be me now.

Having your whole life ahead of you is scary, even with backup – losing your children is hard.

What we have children for

I’m not losing her, and I’m not ‘letting her go.’

We’re completing a process I undertook the minute she was conceived: getting her ready to be an independent adult.

I KNEW my kids would be scattered by being what they are, following jobs, school, families of their own – I was right: San Francisco, Houston, and now Troy.

The ride has been magnificent.

I am unbearably proud of her: she toughed it out, kept trying even as it affected everything she attempted to do. She never turned to the traps that catch so many of our young. She kept up with her friends and her family and her dreams as much as she could, and now goes to realize them.

She will be fine.

I will miss having her here every day again – but only because she will always be my little girl.

We will survive – and I will get back to the writing.

And the rest of MY life, the lurking scary thought.

If you have kids, are you prepared to let them go?

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?


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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.’

Allowing myself to write, not forcing myself to write

Report from October 1, 2013:

I think I have been going at the writing, at least for the past month, all wrong.

Every day I sit at my computer as soon as possible after I wake up. Take pills. Swallow protein shake. Try to wake up – by surfing the net, answering email, pre-writing, free writing…

As soon as I’m ‘functional’ (a fuzzy definition if there ever was one), I block the internet with Freedom, and try to write.

This process of ‘getting ready to write’ can take from several hours – to all day (in which case no fiction gets written today), or at least to about 5pm, after which I usually declare myself defeated/written out – and proceed to try to survive until the next day. Continue reading