Tag Archives: self-awareness

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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Second attempt to restart writing

Section of library at University Retirement Community showing Pride's Childre on the new books shelf, Alicia Butcher Ehrhardt

THE LIBRARY AT URC’S NEW BOOKS SHELF

It takes a while to get back to work.

My previous attempt, one good working day after six months of nada, was on October 2, 2018, right after I got my files back from the crash.

My apologies for the radio silence, but it has been a combination of 1) things needing doing RIGHT NOW, and 2) an exhaustion so profound as a result of the continued stress that thinking was not a possibility.

Not CREATIVE thinking. Nor ORGANIZED thinking.

Tearing out your life by the roots has consequences

In NJ, we had doctors, cars, a driver’s license, food in the basement freezer, bicycles…

In CA, we didn’t.

We haven’t bought a car, and may not. But the shared car available at our new retirement community requires:

  • a California driver’s license
  • our NJ driving record, which in turn required doing stuff online, waiting until they MAILED us an ID, to be used online to order the record!
  • permission from our doctor (when we didn’t even have a doctor) – and I still can’t believe I had to ask permission from him when I finally got an internist and an appointment
  •  ‘Mature Driver’s Course’ – available online, and which only took me 17 hours and three days to complete. If you would like to experience frustration, try the course. And the test questions seemed to be designed to get you to fail. It only took me two tries – and I could have done it faster if I hadn’t reviewed the entire course first.
  • filling out the forms.

It would just be nice to have the option to sign out the vehicle (which comes with fuel and insurance) instead of having to deal with a car rental agency.

And yes, Lyft and Uber and the facility’s own group vehicles, and the on-site bikes and trike are all available.

But nothing is quit like putting your shoes on, walking to your car, popping in, adjusting the mirrors if necessary – and driving away.

Except that it’s an expensive option if you don’t use if often.

I had assistants in NJ

Wonderful helpful women who made my life easier, because they always did whatever I needed when they came.

But there’s no room in this one-bedroom apartment for an assistant, and a lot less for one to do, so I probably won’t have one here.

As a result, there’s a lot of non-urgent unpacking still to be done.

And we’re still waiting for a larger place.

Everything is different

Have I mentioned having a social life? It’s nice – but there is a lot of it, even with just going to dinner every day.

And most things have an inflexible time, something I only had occasionally back in NJ (congratulate me on not calling it ‘home’ very often). Which basically means a lot of time wasted because it’s almost time to do X, or you just got home from doing X.

But today I gritted my teeth

Told myself to stop wasting time, as I may have a lot less of it than I think.

Blocked the internet for several hours with Freedom.

Located the papers I created or brought.

Took out the Scrivener project, the Dramatica Story Expert file, and my Calendar.

And dove in.

I must say, I am VERY proud of my incessant note-taking as I write – because it was like having everything poured back into my brain from a pitcher.

It’s been seven months (if you don’t count the one day) since anything substantial, and I’m hoping this attempt will take.

And I found that the pieces I’ve already done are just fine, and ready to take to the next step, writing the individual scenes for this chapter.

I don’t care how many tries it takes to really get going

None of the interruptions have been my doing. Everything is taking a lot longer to do than it should in anyone’s imagination.

Registering to vote took ages, but I finally have online proof, which I printed out; the voter registration card which has been promised has not yet arrived. That was a high priority, and is usually done in conjunction with the driver’s license, but, because of the other things I need (including replacing my handicapped placard, for which I needed the doctor mentioned above to fill out the form, which meant I had to see him…), we haven’t gone to get the new licenses yet.

Looking back, there is a mañana attitude to life here – from everyone. People tell me it was years before they were completely settled. Though most people move in here older than we are now. And many are in-state, a large portion of those local enough to keep some of their doctors.

And of course we have to try everything, from the Bizarre Bazaar (bought a table and three chairs) to the End of Life discussion group which is starting (postponed that one – it’s a six-week commitment, for an hour and a half each week, either Tuesday or Saturday right in the middle of the afternoon!) to an activity I won’t mention that didn’t work.

And popping into the pools. Ah, pools! And hot tubs.

And the hours it took to connect so I could have Pride’s Children: PURGATORY catalogued (see picture of New Books section).

Just hope for me that it takes hold this time. I am getting very grumpy.

And how have you all been?


Accidentally published first as page, not post – brain not completely back on board! I was mystified: I usually get at least ONE comment. !Ay, Alicia!

Liz, the 2005 Buick Tessara I’ve owned since 2008

APOLOGIES FOR THE CONFUSION OF TODAY’S POSTS

I was so happy to be sending myself photos that I didn’t realize the phone thingy was also posting blank posts along with the images.

And the names got all fouled up.

And the longish post I was writing got lost.

And I am just so tired, I couldn’t even face fixing things this morning. Plus an unreasonable pain from a pinched nerve just wouldn’t go away – finally tamed it with ibuprofen and hours on a cold pack.

The cars are not going with us

My husband isn’t sentimental about cars; we sold his yesterday without much of a backward glance, even though he’s the only owner it ever had, and I don’t have a picture.

So I headed to the window, took my first picture through the screen, realized it was junk that way, took it again – and here you have the car that did the bulk of the homeschool hauling around, and all three kids learned to drive on it (and aced their parking tests!), and it has been to Pittsburgh, PA, and to Troy, NY, bunches of time (we didn’t drive to Pasadena because that was way too far), hauled more junk than I can shake a stick at, and had its seats in and out to make space.

Her name is Liz, because youngest daughter told me (I took her along and made sure she sat in every minivan on the used car dealer’s lot to make sure her older and taller siblings would fit when they visited) that if you name a car, you have to take it home.

The dealer here will take her off our hands on the day we head out of town, and the convenience of having him do the transfer paperwork right has trumped any thought of selling her privately for possibly more money. Plus we’ll keep her up to the last day, and not need a rental. Plus luggage.

I don’t ‘love’ inanimate objects, though I do anthropomorphize, but Elizabeth (Liz) gets thanked a lot when I leave this place – and make it back safely.

The packing is going, going, almost gone…

The captain's bed in my office, with a blue fitted sheet, covered by things still to be packed, Alicia Butcher Ehrhardt

The last of the captain’s bed

and the rooms are emptying to a pile of boxes in the living room ready for the movers this week,

Empty closet with packing materails, Alicia Butcher Ehrhardt

and this is the last of it – and will be the first boxes opened because that’s where the toothpaste is. And the antacids.

We’ve reached the point

where we’re leaving whether the sale goes through or not.

If it doesn’t, the house can stay under management, empty, fixed, and ready to sell until it does, and our lawyer said he can handle the closing. But signs are positive (all fingers crossed, now, guys), as it toodles along lackadaisically toward the new folk, and they have ‘happily’ (according to our agent) agreed to accept a few things we are leaving them because they really need them even though they don’t know that yet.

The house is another thing I will definitely miss, but oddly, because, since the staging ladies and the painter and the flooring people did their thing it hasn’t been my house, anyway.

We’ll have to remember with our memories, and the house as the backdrop of family photos, because I never got to do what I was going to do, namely clean it up for sale (but without all that newfangled staging stuff), and then take pictures. So there are birthday parties in the office, kitchen, and dining room; and Christmases in the living room; and some Thanksgiving photos’ and lots of pictures of the exterior through all the seasons.

But no photos of a tidy house of mine.

That’s all for now, folks

It may be a while before the next post, or, living in an Extended Stay America for a week, I may have so much time on my hands that it drives the words out of my head onto the page. Dunno.

There are still an awful lot of things to do and I hope I don’t forget any of the ones which are critical.

Or pack them inaccessibly. I left the pool floats where I will open them first, and kept a bathing suit out. First things first, of course.

I think I’ll leave you to ponder the existential thrill of letting go of so many things at once and with no time to ponder individual ones, nor to take photos of most of the things which are staying in NJ in the homes of friends, strangers, and the dump. I kept the photos and the digitized home movies and the music transferred to an iPod (need to make a backup of that, too).

It’s supposed to be freeing to empty it all out, to let go, finally, of project you really are never going to do (my assistant took one of them – if she does it, and sends me a picture, I’ll post it, but don’t hold your breath).

I don’t feel free yet, just empty. It does and it doesn’t help that I’ve been almost completely home-bound for many years now, leaving as infrequently as possible because of the energy it takes.

I will get back to writing, and learn a new, communal place, and move on to the next phase.

I don’t regret any of this – but it is a very strong demarcation in my life.

I’m sure you have stories from your moves – I’d love to hear. Please share.


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Death is the joker in the pack

Image of straw hat, and book with blue pen, open; Text: What do you want to leave behind, Alicia Butcher Ehrhardt

QUESTIONS OF LEGACIES HAUNT

I won’t go into detail here, but on June 17th, after we were exhausted from the first Open House (we weren’t there, but we had to get the house into tiptop form), we heard of the sad death of a young woman we had hoped would turn her life around. And the fact that she didn’t or couldn’t has haunted me for the time since.

I ask myself whether I could have done anything, and the real answer is no. Which doesn’t keep me from being sad.

And it is a useless question in a particular case, because it is so final to not be here any more.

Questions of privilege

I will never find out the details, nor does it matter that I do, not even to me. But it made me think about the privilege of being me, even as a woman who has been ill for 28+ years with a still-unknown-etiology disease. The resources I have are not useful to me – but are available to help with symptoms.

But I grew up in a two-parent family, with an education available to me, even to the PhD level. My childhood was no more mildly traumatic than any other – no child gets whatever she really wants or needs, and it wouldn’t be good for her little developing character if she did.

I was surrounded by love, and had extracurriculars such as Girl Guides and piano lessons. I have never been hungry because of the unavailability of food. I have always had medical and dental care. My problems in life are minor and common (other than the omnipresent CFS, and that didn’t happen until I was 40ish).

I have an addictive personality, so I’ve always avoided most alcohol, and all recreational drugs (Note: may be taking medical marijuana in the future for pain; makes me chuckle). Mostly, I don’t like the stupid feeling that comes with stimulants and such, and it’s that feeling that I’m avoiding. I did my small share of experimenting once or twice back in college, found that I hated the sensation in my gut and head, and didn’t repeat. No particular virtue there.

What if you have problems – and NO resources?

What if you have resources you can’t get to? Or they are expensive somehow? Or you perceive them as losing face so severely you reserve them for a ‘last resort’ – and never feel it is last resort time? We all try to protect our futures, and people may not get help because they know how bad it might look later on a resume.

I knew I was privileged – and thought I had earned it. I worked very hard in grad school, never took stupid chances (okay, once or twice). I thought you earned privilege by behaving correctly after you got it. Not messing up. But even as I was not messing up, I was surrounded by a safety net of people and institutions I didn’t want to disappoint – how much of ‘doing the right thing’ is simply that small deviations from the norm are immediately corrected?

My sisters and I always agreed we had the best parents around (by comparison with some of our friends’ parents). No, they weren’t perfect – no parents are – but we won the lottery there, and didn’t realize it.

I did my part, but everything went my way. There was always a path.

I have never been poor or homeless or infected with AIDS or Ebola or TB. I never had an abusive boyfriend. I’ve always had ‘people’ – lots of people. The few times I’ve sought counseling for something, I usually found someone reasonably competent, on my schedule, quickly enough. And it more or less worked, until I’d solved whatever it was, and returned to functionality.

I have, since birth, been solidly middle class.

Oh, and look ‘white’ enough (I am proud of my Mexican heritage – which I didn’t choose or earn, but it doesn’t ‘show’) so no one pays any attention.

Like a nice liberal Catholic, I want everyone to have the basics I take for granted. And that’s nowhere near what happens.

The ‘liberal’ part knows that, if there were no corruption and greed (ha!), there would be a lot more money for needed services.

Well, this administration has brought so many inequalities to light, it is hard to know where to start. Along with compelling pictures of rampant privilege, nepotism, greed, and the Gospel of Prosperity.

But I’ve spent the past couple of weeks wondering what I would have done in the same situation, and whether there is anything (other than voting the right people into office) I can do now. Other than comforting and supporting the living, where possible.

It isn’t enough for me to confront my prejudices and correct them when they’re wrong. And I don’t know what I can do, what with being sick and mostly house-bound. I’ve always known this – and never done anything about it except in trying to behave right in my personal life. Within reason.

The legacy part?

I’ve had the privilege of thinking about my writing, and the books I want to leave behind me. I have the legacy of my family and my children. I hope to be remembered for a while by friends.

And I have promised myself never to forget her. She had both potential and problems, and overcame many things, with much more limited resources than I. Just not all.

Pray for her, and her family and friends. And for the rest of us.


Hard to blog when real life happens.

And it isn’t a request for sympathy for me. Just that you think.

I didn’t see the wild pineapples

Pineapple on grass. Text: The effect of a single choice. Alicia Butcher Ehrhardt

BUT MY CHILDREN DID

And brought back photos. (Not this one.)

There is an oddness to the idea of pineapples in the wild that pleases me.

The modern pineapple is a huge, heavy fruit, supported by a strong stalk. Much like modern melons, watermelons, and papayas, it is hard to believe (okay, impossible) that they are the way we see in the supermarket solely due to evolution.

Evolution produces fruit which attracts animals that eat the fruit and scatter the plants’ seeds, with their poop (fertilizer) somewhat farther away than the plant can throw. In our case, the pineapple, continents away. Shop Rite has pineapples.

Why pineapples, and why now?

Because I have to get back to writing blog posts.

It has been a desert for a while, as all the chores crowded in to vacation and retirement community decision and coming back to a house where everything was in boxes (for the painters) and the staging ladies had transformed the now-sparse contents into a model home.

So many things that HAVE to be done crowded out the optional ones.

The lack of window shades on most windows makes it like living in a fish bowl, only fish are not required to clean their own bowl. It’s nice if they do (by eating the algae, etc.), but that’s asking for perfection. Husband has done marvels with something I didn’t even know existed: temporary paper shades from Amazon which get cut to the right width with scissors, and attached with temporary mounts.

Sleeping has been possible, at least in our bedroom.

Where did THIS pineapple come from?

Stencil – I was looking for an image to write some words on, and the pineapple grabbed me, since I know I saw a picture the kids took on a hike with a wild pineapple growing in a fields (might have been a former Dole plantation).

Today is the first day in a while that something major and required didn’t take over all the energy for the day, but I have gotten out of the habit of putting my thoughts into some kind of order, and I’ve been a total slug all day.

And now we come to the single part.

I check my emails several times a day. Just habit. And hoping there might be an interesting thing to read, or a tidbit of a conversation setting itself up. And one not purely utilitarian and needing an answer, like the email from the woman at the solar company who needs my monthly input to get me the solar energy credits (SRECS) from our installation.

With me ignoring my blogs, and all, I am reduced to input (you don’t get much if you’re not writing) from two people today who saved my brain from the mush: a patron on my Patreon who commented on the new scene available there (the finished scene from Book 2 that I’m serializing). A very favorite patron.

And one of a kind I hadn’t seen in a while: a reader on Wattpad who commented, and is reading the beginning of Pride’s Children which remains there as a sample, as allowed by Amazon’s KDP for books in KU.

With limited promotion for either of these sites, I don’t often get comments. But getting one – from someone discovering my writing for the first time – was a kick in the seat of the pants as to how much I need feedback.

Single project authors can get lost.

Forever.

Stories of authors saved by someone else: John Kennedy Toole, A Confederacy of Dunces, (whose mom insisted on getting his manuscript accepted for publication after he committed suicide in despair – and won the Pulitzer – posthumously). Austin Tappan Wright, Islandia (whose wife typed up his 2400 page manuscript after he died). Even Stephen King, whose wife rescued Carrie from the circular file.

How many more are there out there who spent years, decades on their creations (Tolkien) AND (the more important part) created something of great value?

Rescued by a single act of feedback from a reader?

Computers, word processing software, and the internet now make it possible for writers to create works which are massive and available to many – if the many only look.

As in everything, I fear the great majority of the epics are not great fiction (wouldn’t know, haven’t read them) simply because of Sturgeon’s Law: statistically, they can’t be. But those many projects include a few good ones for some reader somewhere.

Readers keep us writers working. It’s that simple.

Unless the writer has many other sources of support as a writer, the projects can seem hobbies, dilettantism, something to do that is not video games or watching TV.

I thank today’s two readers. It had gotten a bit parched. I’m still here. I love readers.

Must get moving both on writing – and promotion – to find more. I am not unhappy to admit I need them. Even if I claim to write for myself.

Do you ever feel invisible? What gets you out of that state?


 

BEAUTIFUL BUT BITTERSWEET

This is the view from the balcony.

The water is SO blue.

We came here for the kids, and it has been a great gift to see our three plus one significant other – for meals, for pool time, for watching Moana last night with them all in a pile like puppies.

But you can probably figure out it isn’t as easy as I would like!

There is a lot of walking (for me).

There is seeing middle son spend seven hours biking up, and then down, 10,000 ft., using enough energy in one day to fuel me for a year.

There is me being unable to walk as far as the ocean – so I haven’t been in it. They say it is warmer than the pools – which have been ‘heated,’ but consistently too cool. And the hot tubs, except for one, late at night, too hot to stay in for very long, with an annoying sign that says the elderly shouldn’t use them! Bollocks to that.

Hawaii apparently doesn’t have all-inclusive resorts, so fooding has been more complicated, and the five of them (four plus husband) have had to go shopping several times.

Why am I complaining?

Because I’m pretty useless for most of the tasks. My chef offspring have been feeding me – we still respect the matriarch enough to keep her around.

But it is mildly annoying.

And I realize how marginal I am when it comes to taking care of myself in a strange place, I who used to take care of three little ones in strange places, more or less (I’ve had ME/CFS since before the third one – who is now the designated driver on the rental car!).

It galls a bit.

I don’t care.

It is wonderful to see their bonds still intact, and strengthened by the pleasure of being together, my far-flung kiddies. This is one of my prime concerns – so many people don’t know their own adult siblings all that well any more.

I had a lovely talk with a woman from Chicago; she said the idea – get together once a year with everyone for a vacation (not an original idea) – was brilliant. I told her SOMEONE has to initiate it – or it won’t happen.

Some families have a beach house of a cabin somewhere – that probably works, but I’ve heard stories of very uncomfortable accommodations, especially as little ones come along. I think using a resort is better.

The other part is making the three of them pick the dates – so they have to work together before – and the place. That way it isn’t foisted on them by Mom and Dad.

I suggested that it NOT be around the holidays – then they’ll be able to go to their in-laws for Christmas – when travel is expensive and complicated.

They picked May. It would have been perfect had we not been right in the middle of putting the house on the market, but even that has had its good side: the painter has repainted our interior while we are not there!

So hello from Maui

And we’re leaving tomorrow. I did note it took me until this morning to wake up feeling adjusted to the time zone.

Oh, well.

Just look at the picture: it’s gorgeous here.


Reminder: royalties and page reads for Pride’s Children (above right) in May being donated to #MEAction for advocacy for us ME/CFS types – sorely needed. Thanks for all who have participated.


 

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.

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.