Category Archives: disability

Staying comfortable in the saddle again

Section of a side view of the Rose Garden at URC showing the side exit door and some of the path

Out door – but not in right now

UNEVEN SIDEWALKS AS A CHALLENGE TO CONFIDENCE

We are on lockdown, which currently means you can go out, but not in, through all the usual exit doors in our building.

Why? So they can control who comes into our facility, and make sure they’re wearing a mask, and pass a quick health check, and I think take their temperature. Good precautions, and control of entrances is a part of that.

They’ve added a check station by the campus’ front entrance from the street, so cars and people coming in can be queried as to whether they are essential personnel, essential visitors, or not. A patrol car with a private security guy sits there, and some of our staff are in the little covered space to deal with contractors, delivery people, etc.

No enforcement possibility is necessary – it’s all voluntary, but family members are being turned away, even if they’re bringing something, most of the time.s-l500

Maggie2 is identical to Maggie

Both are black. Unobtrusive.

Maggie waits for me to find a part and a repair person.

But I found that after two months of not riding, I’ve lost confidence in my riding ability and Maggie2’s balancing ability, so I need to go out with some excuse to ride around a bit every couple of days.

Part of it is sidewalks and paths and curb cuts and cutouts: they make look smooth to an able-bodied walker with no balance problems, but they are neither truly flat nor even remotely smooth.

Sidewalks and paths are made a square or rectangle at a time, with gaps between them. When a repair is done, or a utility opening is created, the finished product is roughly smooth (an oxymoron).

I’m not a light-weight kid with the great balance of youth

There is a lot of me, and the Maggies cope, but I sometimes wonder how much of a strain it is, and how near the actual limits I might be, especially when riding outside, with up and down slopes. I don’t go near steep gradients any more, and plan my travels with slopes in mind.

But if I haven’t been in the saddle for even a couple of days, I’m ever so slightly nervous when I hop on board, such as to go down to get the mail. When trundling down the corridors, I’m conscious when I start that I’m a little unstable.

It’s like when I haven’t spoken Spanish for a while, and my sisters rattle off on the phone, and I’m expected to just jump in and participate – and I feel so awkward reaching for a noun or wondering if they still say things in a particular way.

So tonight I went for a little planned ride

Checked the battery – 3 out of 4 dots. Good.

Took the elevator down to the first floor (elevators are wobbly because they’re on cables), and headed toward the side door (in picture). Right now the entire first floor is being painted, the furniture changed, and the carpet replaced – and is covered with a layer of plastic that crinkles as we ride along.

Use the paper towel so I don’t touch any surfaces directly, from the elevator buttons to the door opening buttons first into the stairwell, and then out into the side Rose Garden.

Grit teeth – tell myself it isn’t that big of a slope out. It isn’t.

Say hello to other Resident who chooses this moment to come out with a large dog and a frisbee – and ask that they both be mindful of where I am, as I don’t want to be knocked down or startled off my perch by a vigorous dog which is aching to get some running and jumping and catching in.

Go down the path – and run into a moving van which has barely left enough room for Maggie and me to go down the sidewalk.

In through the front lobby – and check that I can get out of the building near the Skilled Nursing section. They say yes. But when I get down there, I find that the door opener doesn’t work after 5pm, but I can get out if I push the door. Push, hoping no alarms will go off.

Then around the north end of the building, in and out of the patio area, and back to the front entrance – all the while up and down slopes, on and off of sidewalks, around sharp corners (keeping the two of us in the center of the walk), around patio furniture piled willy-nilly, smelling some lovely roses, and up and down several curb cuts.

On our way back now

Check in, chat a moment, tell them the door doesn’t open automatically after 5pm., but you can still get out (front desk seems knowledgeable all the time, but the details sometimes escape them).

Chat with a few of the servers, both of us masked – we miss our dining room staff like crazy. One is excited they are moving toward reopening some of the dining venues. I tell him we are not: no cure, no treatment, no increased hospital capacity, no vaccine – and exhausted medical personnel. We’ll probably stay in much longer than strictly necessary.

Pick up the mail. Chat with another Resident (I have to keep backing up). She’s hoping the path from hospital (starting in December, not covid-19 related) to Skilled Nursing and now to Assisted Living is only temporary, and that she’ll be able to go back to her Independent Living unit. I tell her I hope so, and want to know – I will be resisting the Assisted Living part in a similar situation unless I’m sure it’s reversible if I can handle it.

Zoom up the corridors, reverse the elevator ride – and husband say: “That was a short ride!”

Decontaminate

Put mail away, put everything back in its place, being very conscious of what might have touched a surface outside the apartment, stabling Maggie2, and washing hands twice, thoroughly, during the process.

And we’re home!

I regained my comfort, mostly, with riding. I’m glad I included time outside and with challenges – they were a bit scary and got better on the circuit. Other people commented on how smoothly we move – and I didn’t disavow the prowess.

But I know.

And that’s all the excitement of the quarantine/isolation at the CCRC today. Absorbing, eh? And reset the brain by seeing other humans (I haven’t been out much otherwise), and talking to them.

Until next time.

Tomorrow is trike ride day.

These things seem and are trivial, but they’re also important to do for psychological welfare, especially since we’re going to be at this a long time.


Stay well.

Writing persists, though right now it seems to be taking me 5-6 hours to get that brain to come on every day. I am well into becoming Andrew to write the next scene, after days of gathering.

That’s all I ask for.

Hope everyone out there is staying safe. Or recovering. I know some are not, and still have trouble some days believing the whole disaster.

“Another nice mess you’ve gotten me into.” Yup. Part of the week’s research included watching that used in a whole bunch of their movies. And yes, that quote is accurate. Memory is funny.


 

Too tired to post about ME/CFS yesterday

Image may contain: possible text that says 'MYALGIC ENCEPHALOMYELITIS (ME) MILD ME 25% CAN WORK WITH GREAT DIFFICULTY AND AT LEAST 50% OF THEIR FUNCTIONALITY. MODERATE ME ARE HOUSEBOUND OFTEN REQUIRE A WHEELCHAIR OUTSIDE OF HOME. DAILY TASKS LIKE BATHING AND COOKING LARE A STRUGGLE. VERY SEVERE ME ARE TUBE FED, IN SEVERE PAIN, OXYGEN AND OFTEN CAN NOT SPEAK. SOME AWAY. THEY ARE SOME THE SICKEST PEOPLE ON EARTH. SEVERE ME BEDBOUND IN DARKEND ROOM ALMOST COMPLETELY DEPENDENT FOR ALL PERSONAL CARE. MEICFS AWARENESS @CHRONICALLYRISING'

MISSED EVEN WRITING A BASIC POST:

MAY 12th WAS INTERNATIONAL

ME/CFS AWARENESS DAY

So today, a day late and many dollars short, I’m boosting a post from @ChronicallyRising on Facebook, which will give you an idea of what I live with.

For over THIRTY YEARS now, I have been in the very badly mislabeled ‘moderate’ category – with occasional good days where I’m lucky if I have lost ONLY 50% of my functionality.

Because this is my daily reality, I don’t make a big deal about it.

I have used my experience with the disease

to write the on-going Pride’s Children trilogy, where I have gifted one of the main characters, Dr. Karenna (Kary) Elizabeth Ashe, with the ‘mild’ form – and explore how being chronically ill affects your whole life and all your choices.

When you lose your entire medical career, ‘mild’ is a misnomer.

Society writes you off; it did her.

She learned to write – something I’ve done. But I’ve given her a better experience and a traditional publisher in 2005. She’s turned into a reclusive but well-loved author of several historical novels, by spending ALL her energy on her work (since there is no way she can be a physician any more).

And living alone.

She is much younger than I am – in the ‘adult woman’ vague category.

And there’s nothing wrong with her – except disease and society’s expectations. And how much she gives in to them.

The world may find out

after covid-19 slams through its entire population, that the incidence of this kind of a post-viral, post-survival of the acute phase, syndrome, is far more common in the pandemic’s aftermath.

It is speculated that a large proportion of the survivors will have life-long problems. Numbers are not available this close to the outbreak.

Maybe my stories will help those who are ignored by the healthy, the researchers, and those who fund public health initiatives – until it happens to them.

We are all still people, still worthy, still capable of pain and loyalty and love.


 

Seniors afraid in lockdown without being consulted

NO ONE HAS ASKED FOR MY OPINION

Decisions are being made left and right about the people who are living in senior communities.

From Independent Living, to Assisted Living, to Memory Support units, to Skilled Nursing facilities, managers and administrative personnel, government officials and medical personnel are taking decisions without consulting those of us who live in these places.

Those who can’t make their own decisions

There are a certain percentage of us who will not be making decisions for themselves because their minds are failing, and they don’t understand what’s going on – or what the options for doing something about it might be.

Families and facilities will be making those decisions, and many in this group have been badly served in homes and in those facilities which were supposed to keep them safe. Many have died without a clue as to what was going on, and without having their loved ones with them.

And yes, they are living and dying afraid.

But some of us are perfectly coherent – and we are being ignored

There are many of us who need some physical caretaking, and others who have joined a facility like our Continuing Care Retirement Community are perfectly functional and coherent but getting older.

Management routinely ignores our expertise and refuses to take advantage of the fabulous array of powerful minds here.

It is a lack of respect.

It is being managed by people who have far less knowledge and experience, compared to the accumulation in our particular facility, than we do, and who act as if we were children looking for something entertaining to do with our time.

I admit we will all fail with time – and some will accept that more graciously than others – but it galls.

Even though I’m one of the people whose expertise doesn’t go to the public good, I recognize the people among us who have been and still are powerhouses – and it galls.

It is a form of gaslighting

If you treat people for long enough as not having competence, they will give up – and that’s not good for us.

The result is an unnecessarily exaggerated lockdown, partly due to those among us who are not capable any more of understanding the limitations, but applied to those of us who are, and it doesn’t make for happy compliance when those with opinions keep getting shot down.

It’s not a good time to leave.

We made our decision, highly based on the people who live here, and will probably stick it out unless one of our kids has extraordinary requirements, and possibly even then, because I am so physically limited I’m practically useless.

It could be, SHOULD BE different

But it could feel SO much more like a collaboration between those of us PAYING for services and those providing them.

Which would serve to allay the fear, and find safe ways around the restrictions such as people who moved here so a spouse could be in the Memory Support unit most of the time, but have some meals with spouse and other family members in the various dining facilities, could see that spouse.

I greatly fear that we have lost what makes this place special, and are too easily giving up what makes this place good for couples where one person deteriorates first.

I fear for the mental health of those completely isolated ‘for their own good,’ who can’t understand or remember the explanations – and have no family or friend able to supervise their care. It is well known that the one thing that keeps a facility on its toes is supervision – for the little things which don’t appear on the checklists.

And for those who need the facilities here to exist even slightly well, I think we are being so restrictive that they/I am in pain far more than necessary, and some may be losing the will to fight on.


Management shouldn’t be as overwhelmed as they are – the business efficiencies, unquestioned, add up to hardship.

The lack of transparency really hurts.

And the attitude is confrontational.


 

Easter with bunnies but no peeps

A takeout container with a sugar cookie pink bunnie and a petit four with bunnie decorations

Bunnies!

OUR STAFF CONSIDER OTHER NEEDS THAN FOOD

This is a good place.

In ordinary times, every holiday gets celebrated – and there are special meals, special desserts, alcoholic beverages (Mimosas, anyone?) for holidays.

The rest of the time you may bring your own wine and beer, or purchase it by the bottle or glass. Very California wine country, our neighbors.

The decorations are wild. Staff wear special extras. It is so Christmassy at Christmas, that we don’t feel the need to decorate our own digs.

So tonight’s dinner – which I haven’t eaten yet because I had lunch and then went out for a trike ride before dark – came with extras.

Bunnies – 2 cookies, 2 petit fours

My very favoritist thing in the whole world is the tiny petit four.

The yellow bunny and the other petit four didn’t survive to be photographed. Then I thought maybe I’d take a picture and share.

Dinner was acceptable – ham and shrimp – unless you don’t eat those, and then there were other options.

But dessert came protected by its own recyclable (5 – so not very) container to protect the delicacies, at least until they got near the person who eats bunny ears.

The day was gorgeous

It got up to 73°F, and I went out for a nice slow trike ride – I’m managing a couple of rides a week since I don’t have to save energy for the pool days. It’ll do.

I’m never going to get that much exercise, as it is contraindicated (at least getting very much is – heart not supposed to go aerobic because it can’t sustain that).

But it’s beautiful out there in Davis right now.

img 1073

which I didn’t get off the trike to get close enough to identify, but might be bougainvillea or could possibly be crepe myrtle (ours in New Jersey was that color).

StreetsIMG_1046 are mostly deserted.

But riotous growth requiring significant pruning hasn’t occurred yet.

Not very exciting, but I recognize the need to get out of the building, and onto the greenway periodically, for mental health.

Family visits with the kids, and with my sisters in Mexico, made the holiday special – we’ve promised to do it often, now that w’ve all figured out Zoom (thanks for making it free for 40 min. ‘meetings’).

Keep celebrating, keep sane, keep doing something you love

This won’t last forever, and we’ll want to account to ourselves for what we did, read, ate, and wrote.

I’m writing – the second book in the Pride’s Children trilogy, NETHERWORLD (for the hell the characters must go through at times) – is coming along nicely.

It’s about time! I thought we’d never run out of things that absolutely had to be done before we could settle down into quarantine, and that required my attention personally, but it has happened.

None of it included organizing or cleaning – so I have little to show for it.

But today marked the completion of a scene started just a week ago, which I thought was going to be almost impossible to write, but when I settled down, followed my checklists and my process, and focused only on the piece at hand – it went as it always does, right down some path deep in my brain that I can’t anticipate exactly, but includes all the stuff loaded into the ‘must go in this scene’ list – and somehow makes sense.

Don’t ask questions of your muse, lest he or she decide you aren’t trusting enough!


Hope that, amid the chaos, there are things going well in your life, even if they aren’t any bigger than a pink sugar cookie bunny – or the picture of chocolate bunnies with face masks my husband forwarded this morning from wherever he found it.


 

Stress may make you very clumsy

Section of pristine-looking carpet with toes of two socks

I can’t see the stain; can you?

SOME THINGS WORK RIGHT

What is the significance of a photo of a section of carpet?

Lately I seem to be more clumsy, especially in the kitchen.

Because standing is painful, and awkward, AND I hurt my shoulder a week ago (it’s mending – slowly, as we ME/CFS types heal), I do a lot of my meal preparation sitting on the seat of my walker (Sylvia – yes, I name things, and she’s been with me over 15 years).

The walker seat has sides, and my arms and elbows sometimes run into its frame.

And for some reason (yes, I’m paying attention in case it is a real problem), I keep dropping things and bumping into things.

It is a small kitchen.

And the pullout cutting boards make very good food-preparation surfaces.

And I try to do everything I possibly can for myself – not wanting to overburden the spouse when we hope there will be many years ahead.

So, last night I heated my dinner…

Chicken with a cream sauce, and cottage cheese.

I set out for the living room where the husband was watching TV.

I got about three steps out of the kitchen when I used the ‘F’ word, very loudly.

Our nice lightweight plates have no friction with the walker seat on which my plate rested.

And I dumped a FULL serving of chicken, cream sauce, and cottage cheese – right in the middle of that space I photographed.

If I had been thinking of y’all, I would have photographed it BEFORE I cleaned it up.

I just want you to admire that job

I immediately rescued that which could be rescued.

Removed the rest of the larger bits with paper towels.

Fortunately, yesterday morning was housekeeping day – and everything had just been vacuumed (could have been – and was – FAR worse before they decided to give us housekeeping back).

Then I got out what our eldest has recommended, Woolite pet odors etc. + OXY, cleaner.

I sat down on the rug.

I followed instructions:

  • Spray, do not soak, do not scrub.
  • Let rest 5 minutes.
  • Blot with clean white towel.

Five minutes later, and I came back, did the blotting.

And took a picture, because I could not believe what a good job this stuff does, even though I’ve used it before, in NJ, on carpeting of that color – but with red wine or Birch Beer soda or spaghetti sauce, all red.

I think it’s the OXYgen. Good for organic spills.

And possibly that I attacked immediately.

You REALLY can’t tell.

And that’s the story of the photo.

The clumsiness I’ll have to watch.

It may be stress.

It may be the beginnings of something else.

Or it may just be that sitting to do things is awkward.


Dinner was delicious. Mostly cold. I didn’t care by then.

 

Sleeplessness is where coronavirus stress shows

I FEAR THE FEELING OF FALLING ASLEEP

I have to confess that I’m not normally an easy sleeper.

Partly because late evening I feel almost human (it’s not real – I don’t make good decisions then, and I can’t write then).

And partly because every single morning is a struggle to get myself into a state where I can function at all.

Here at the retirement community I’ve had the ability to sleep later in the morning, and to take naps whenever I need to (or should) take them, I have been able to compensate – and get enough total sleep during a day so that I’m not a complete zombie (there’s a reason sleep deprivation is literally torture).

But it’s mostly fear

I have learned, grudgingly, to give in to the sensation of losing control of my own mind – because I try to master my fears.

But I have never liked the loss, and I fight it – especially when I’m tired and my decision-making faculties are diminished – and I can literally force myself to stay awake if I think something bad is going to happen that needs me to be coherent to deal with it.

This is NOT improved when I wake up in the morning and something new hurts.

Or I find the body position I’m in has resulted in one ankle pressing the skin and flesh on the other ankle into something completely flat that aches and cramps as the blood returns, quite painfully.

Or the medicine that I took right before sleep has decided to dissolve in the back of my throat and wake me with uncomfortable pressure in the middle of the night.

If I could skip sleep

I would. Almost every night.

But I feel worse without it.

And I know intellectually that sleep is so critical that a form of torture is to not let people go to sleep.

I also take 3-5 half-hour naps during the day to rest my brain: if I haven’t had enough sleep the night before or days before, those naps can turn into deep sleep with nightmares during the day. Even with an alarm.

The lockdown and the coronavirus make it hard to let the day go

The tireder I get, the less I can use my mind to suppress the things that are worrying me – as they are worrying everyone on the planet right now: my personal situation re medical services, the lives and careers of my children, and of my family in Mexico. The uncertainty of tomorrow.

Knowing we haven’t had a case here (probably), and wondering if we will – given the news that the virus rips through senior communities leaving devastation in its path.

Since it’s a constantly changing situation, we can’t relax into a new routine, because nothing is routine now.

So I have trouble sleeping.

I’ve tried most ‘solutions’

But I either can’t take them (I tolerate very few meds) or they require me to do something at a time my brain isn’t capable of it.

And you can’t cure existential angst – it’s real.

Meanwhile, I brush my teeth, make sure I have something I can eat in the middle of the night, do my stretches for restless leg syndrome, say my prayers – so that when I reach that point every night where all of a sudden sleep is worse than continuing awake, all I need to do is lie down.

And the battle to stay asleep begins.

Because it’s never a one-time decision.

Things that keep me from staying asleep:

  • hunger
  • uncomfortable binding around any part of me
  • anything bumpy under me
  • pain
  • worry
  • a thought in the middle of the night that must be written down
  • sometimes (!) fiction
  • being too cold or too hot (repeat several times each night)
  • gut pressure (what the heck did I eat?)
  • thirst
  • the sound of the firetrucks and ambulances coming to the lobby
  • outside sounds (do they really have to do these things mid-night?)
  • rain
  • husband’s breathing
  • funny tastes
  • a muscle that twitches every ten seconds for hours
  • etc.

I can now consume cottage cheese in the middle of the night without waking – much. Which then requires that the next chunk of ‘sleep’ be done sitting up a bit.

If I’m desperate, I turn the computer on and play sudoku or something – after about an hour and a half (one sleep cycle), my body is given permission to try again.

And eventually it takes. And sometimes I can sleep enough into the morning to almost have a decent number of hours’ worth total sleep.

I don’t think it will get better for a long while – the world has turned and is now essentially unstable.

Who wants to go to sleep when it might be your last time awake?

Which is silly, because ‘going in my sleep’ is my preferred method of checking out!

Because I’m not ready. Honest. I’m in the middle of a novel, the middle of a trilogy, and finishing them is the plan.

Even if ‘plan’ has become a joke.

Hope y’all do better at this sleeping thing than I do.


 

Riding out the storm in a CCRC

A Continuing Care Retirement Community (CCRC) is a giant bubble.

I went swimming (okay, floating around) in the indoor pool for the first time in almost a month, since I got the flu.

Not another soul around.

On the way back, I went outside for a short bit – and we had dinner with friends.

This is as normal as it’s going to get. Our hatches are battened down. We are in a virtual lock-down – no one in from the outside who isn’t necessary.

Food selections are far fewer – but still someone else’s job. The servers, many of them high school kids and college kids, are doing a lot to keep us clean, and counter and door knobs wiped – and we’re going hard doing the same.

It’s going to be long – we were estimating it will take at least a couple of months. So we are cautiously supporting each other, and happy we moved here – this would have been soul-killing in NJ, even though there are so many more potentially infectious people here.

I don’t know what will happen – apparently this is Level 2 – and they have plans up to Level 5!

I wonder if the service was as good on the deck of the Titanic.

Outside people – staff

First, our staff. For 350 or so people, we have 200 staff.

TWO HUNDRED PEOPLE who go home every night and come back the next day.

All of our staff live in Davis and the surrounding communities, including Sacramento.

Outside people – family and friends

A very large percentage of our residents come from the city of Davis (where the University of California, Davis, is located). Many taught at UCD, reared children in Davis, and/or still have a child or grandchild in the city.

For Sunday brunches and holiday meals like Thanksgiving and Easter and others, we have to make reservations in advance because so many family members come here. For a quite competitive price, it is easy to have your whole family come here for the holidays. After, while the grownups are talking, it is easy for a few of the parents to take the more wiggly kids swimming to tire them out.

So the connection to Davis is strong – and large.

We have been asked not to have any nonessential visitors – INCLUDING family members. No restrictions on going out – yet. Our oldest from San Francisco will not be coming.

Outside people – everyone else

Firefighters and ambulances are common here – they respond to all kinds of 911 calls, from falls to potential fatalities.

Outside workmen are here all the time, involved in ongoing maintenance and refurbishing the 10% of apartments that turn over in a typical year. There was a guy walking on the roof on the other side of the building this morning. Our roofs have just been replaced – possibly some kind of inspector.

Delivery personnel, including post office employees, are here daily – the front desk handles a mass of packages from all over. These people are now being asked to stop at the front desk and take a temperature scan, and their entry into the building is being minimized.

Staying occupied and involved will be up to us, individually.

All other groups – and we have concerts, lectures, trips, movies – from the outside are being canceled. We are mostly staying in our apartments – not congregating in groups of more than 20 has been requested by management.

We’re trying to ‘flatten the curve’

All we can really hope for is slowing the contagion. The concept is well delineated in a graph from various sources; FastCompany has the story AND several versions of the graph, including one that emphasizes what place like our CCRC are trying to do.

The idea is simple – even for those with a limited science/math background: our healthcare system (NOT uniformly spread over the whole USA) has a certain number of beds in intensive care (under a million), of which about 10% can support critical patients who need help with breathing (about 90,000 beds).

If we have too many people getting to the critical point where they need breathing support (like currently in Italy), then there literally will not be enough of these hospital beds to go around, and doctors will have to make tough choices about who gets one, AND THEY’RE ALREADY PLANNING ON THROWING OLDER PEOPLE AND PEOPLE WHO ARE ALREADY DISABLED or ILL WITH OTHER PROBLEMS (like ME/CFS) UNDER THE BUS – BY DENYING THEM ACCESS TO THE LIMITED BEDS.

So it is crucial to have people get sick at a slower rate.

Because we have no tools to STOP the virus yet. No vaccine, no immunity.

Slowing contagion is done by increasing the distance between people beyond 6 ft. (droplets from coughs make it about that far). Not going out. Not bringing people in.

And by proper cleaning techniques for surfaces (the CCRC staff plus residents are decontaminating surfaces frequently).

And by not transferring any virus particles to ourselves: proper hand-washing, and NOT touching our faces with hands which might be contaminated.

By letting medical personnel know if we have any of the symptoms: fever, cough, headaches… so a sick person can be further isolated if appropriate – and helped to get better.

It still takes SEVERAL WEEKS in intensive care to recover, if you’re one of the critically ill. During that time, you will be occupying a bed and having a lot of help with breathing, and taking a LOT of time from medical personnel.


That’s it for the current state of our waiting, quietly trying to conserve resources and delay the onset of the inevitable as long as possible.


Be sure you have books to read, ahem – long fat complex books – while waiting out the storm.

Maggie I have loved too briefly

s-l500

Robot – Emotional support – Miniature riding horse

From Sep. 12, 2019 to Jan. 29, 2020, I had Maggie to ride.

Maggie is an Airwheel S8.

Like a bicycle seat on a post on a hoverboard. ‘Maggie’ for the magnesium alloy she is made of. Maggie is black.

When I rode her, all it took was a tiny shift in my center of gravity to zoom off in all directions.

She is broken – I hit a curb.

My entire life changed when she became part of it, and I don’t know if I’ll be able to get her fixed (she’s Chinese, from somewhere near Wuhan). I’m back to dragging myself around with a walker; because I have ME/CFS, and little energy, it is literally dragging myself.

Some day I will need a scooter or a wheelchair, but not yet.

Meanwhile, I mourn. I don’t know when I’ll get another, or Maggie fixed.

I am SO glad I have had her. She was my 70th birthday present to myself, and the bigger gift was that I could ride her, and will never have the regret that I didn’t try.


 

You’ll never guess what I’ve done

Alicia sitting on an Airwheel S8 (a bicycle seat on a platform with gyroscope stabilization)

ALICIA SITTING ON MAGGIE, MY AIRWHEEL S8

Start with the obvious: what the heck is that?

Her name is Maggie because she is made from a magnesium alloy.

Conceptually, think of  a ‘seated Segway-type device’, and imagine me zooming around the Davis greenway this afternoon, just to get out of the house.

In addition, I have Trixie, my adult trike:

img 0797

with her basket:

img 0798

for days when I have energy for exercise (and don’t even want to think about plugging her into an outlet).

And lastly, I have my trusted Sylvia (Who is Sylvia?), my Invacare walker (no pic).

These are the devices that I use to get around our new home (University Retirement Community at Davis, California).

Maggie requires the least energy from me.

Here’s the picture of one of her siblings (from an ad):

Airwheel S8

I bought her on Ebay for around $500. There are more, but I have the feeling they may be produced at the factory in batches. I got the two-year Ebay Fair Trade Warranty, which I hope never to have to use, and joined the Electric Unicycle Forum, so I have a place to ask questions (Maggie is in one of the subcategories). These devices are powered by electric motors, and gyroscope stabilized.

How did you find Maggie?

Starting over three years ago, I googled ‘seated Segway.’ Segway doesn’t make one, but I can’t stand for very long, and need the seat.

Also, I have very little energy, and I try to use it for my writing (you all remember my writing, right?).

I watched videos on Youtube, with my favorite being this. It is short (23 seconds) and so cool. I wanted to be her.

Then I checked Ebay, and found several vendors offering the Airwheel S8.

The rest has simply been convincing myself that I could do this. That it wasn’t the craziest thing someone my age (late 60s when I started looking) could even consider. That I should try it quietly riding around the corridors late at night (the corridors even have hand-rails – I haven’t needed one once).

Why?

But I knew I needed something like this because this community of around 350 people are mostly in four floors of a single building, and the halls are very long to get to places.

I can’t do so many things because I don’t have the energy to get to the rooms where they happen. Even going down to dinner was painful and energy-sucking; I did a lot of it scooting backward while sitting on the walker’s seat, looking over my shoulder.

I want to remain INDEPENDENT as long as I possibly can. I don’t have the energy to push myself in a manual wheelchair.

And I am simply not psychologically ready for a powered wheelchair or scooter (besides which, they occupy a lot of space, both in halls and when parked).

But what if you fall on your face? Won’t you look foolish?

Ayup.

The thing that surprised me the most was how easy it was.

Charge Maggie up (3 hours max). Push the red button on the base. Push the red button on the remote – and she comes to life; beep! Sit on the saddle; beep! Put one foot on the base, dare lift the other foot onto the other side of the base.

Ride into the living room and startle the husband. Go out and try it in the hallways. Done. Go home and wonder if maybe watching the Youtube videos taught me subliminally – or it really is just that easy. Ayup.

Show people in small quantities.

Within a week all pretense is over, and I’m showing off every chance I get – haven’t been this cool and the center of attention in decades.

Do you have to balance?

Not much. It’s as if you were sitting on a bicycle seat on a post on the ground. Maggie does the stabilizing by reading your slight tilt, and feeding power to the wheels to follow your commands: slight lean forward or backward to go (move toward neutral position to stop), press on the seat with your inner thigh to twirl.

I am far more stable on Maggie than on my own two feet. Irritating, but I have no choice – the nerves to the muscles on the back of my legs are damaged, and only transmit a small amount of my instructions. On Maggie I can literally just sit there, not moving at all.

Going for a ride

The hardest movement (gulp) was the first time I was faced with a downward slope. A tiny downward slope. I held onto Maggie and walked down it. The next bit was an upward slope, so I tried that sitting – rock solid moving slowly up the slope. The next downward one (gulp) I just rode down, just as stably. Huh. Within ten minutes I was doing the slope up and down to the underground garage.

Since then, curb cuts. The bumpy things they put there for blind people to sense (way too bumpy, if you ask me – poor blind people!). Driveways. Speed bumps!

The biggest danger is cracks in the sidewalks and between cement sections of sidewalks and streets – anything uneven. Maggie scoots over them while I hold my breath the first time. The asphalt paths around here have deep fissures, so I do have to watch where I’m going.

Inside, I come to almost a complete stop at corridor intersections – don’t want to knock any of my fellow residents down.

Enough for now

Many more things have been occupying my time, and I’ll post about some of them (sorry it’s been so very long since I blogged).

Adjusting to the LDN (low-dose naltrexone) has been tricky. Adjusting to the social life has been time-consuming.

But I’m finally writing consistently again (my beta reader thinks I haven’t lost my touch), have some control over where the energy is spent (we’ve used the pools a lot in the hot weather), and, as the dining room manager said tonight, “You seem much happier since you got Maggie.”

Happiness it is. I had a crazy idea to save my energy – AND IT WORKS!

Now all I have to do is reconstitute some of my singing options from New Jersey, here at URC, and I’m set in a good place.

Husband admitted tonight that he’s proud of me – and seems to enjoy explaining Maggie to the masses.

Stay tuned. Questions welcome – I’m turning into such a ham: I stop, demonstrate, and talk about Maggie anytime someone smiles!


Pride’s Children NETHERWORLD is proceeding. Prepare by reading PURGATORY – I haven’t had ten seconds for marketing, and the readers have been commensurately few. If you like it, please recommend me to your friends.

And I’m working on getting the Prequel short story TOO LATE published.


 

New after a year Low-dose Naltrexone

Baby coffee plant with around a dozen leaves in a blue and white ceramic pot

I WOULD RATHER SAY I’M WRITING REGULARLY

but the reality is different: and I have a temporary good excuse.

BTW, WordPress is giving me a hard time here, but the photo above is a picture of one of the coffee bean plants I’ve managed to keep alive since they were given to us by one of our new neighbors (as babies). I guess you could call them toddlers now.

I’ve named them Castor and Pollox. One of these days I will figure out which is which, but they came out of the two halves of a single coffee bean, so they will always be twins.

Our new place faces north (we picked it that way so I can sit by the window every day), but there is an indentation, and there is a window ledge which gets sun in the morning. The plants have been much happier (How does a plant display ‘happy’? It grows.) since they get some morning sun, even though coffee plants grow best in shade.

They get the same treatment my houseplants did in New Jersey: if they live, I water them once a week or so, and they are allowed to continue living.

This is true of the twig that came with a flower arrangement a while back – because it had perky green leaves, I continued to water it, and I think it’s still alive, probably with some rooting going on in the block of florist foam that holds it. One of these days I’ll plant it. If it’s still with us.

Something has changed since the move.

There are a lot more people here, and trying for a minimalist experience – having dinner several times a week with new friends, is challenging for someone like me who used to try to limit leaving the house to twice a week.

Because I now have the pools (have to use them on these hot summer days) and the adult trike I just bought from a resident who is 91, and isn’t planning on riding it any more.

And an occasional concert. And a Mass/communion service twice a month. And a very occasional resident’s meeting or management/resident meeting or…

It isn’t the time commitments

And the occasions are all pleasant, not too taxing (for the normal person) and something to do.

Plus the many decisions (we bought new mattresses!) involved in having a new home (I got the new doctor, after about a HUNDRED hours over four weeks, to give me the exact SAME pain prescription I’ve been using for fifteen or more years).

I still don’t have a California driver’s license; it’s next on the list. I think.

But the time commitments have been far more than I had before.

And I’m trying to keep up with a few friends back home, and my family in Mexico.

What I’m trying to say is the brain isn’t reaching writing strength

as frequently as I need it to.

For as long as I need it to.

I sit at this computer every day, doing all the things that usually worked in the past – blocking the internet, taking B-1 and B-12 (I’ve now added a Vitamin C pill), pacing and taking naps as needed, trying not to eat carbs (they mess with my mind – but I had dessert last night).

But the creative brain isn’t clicking on, and when it does, it doesn’t stay on for long.

I think it’s tired of me diverting its output to mail, doctors, phone calls (necessary), minor new things, major new things, and legacy stuff.

To give the ol’ brain some help

I’m trying the last ME/CFS managing trick I had saved for a time like this: Low-dose naltrexone (LDN).

It has helped many people with ME (and other things) function.

I want less brain fog.

But it may eventually help with pain and sleep and possibly some of the exercise intolerance, and maybe the orthostatic intolerance. I dunno.

I’m taking it for less brain fog – and there are no guarantees.

It was prescribed to me by a neighbor/doctor who used it with his patients.

But back in New Jersey I could still manage to write

Most of the time. Slowly. By not leaving the house. By doing almost nothing.

And you don’t mess with what works.

So I’ve had the capsules for two years without trying them.

Brain creativity doesn’t seem to be coming back, or not fast enough, or strongly enough.

Thing is, there’s a ramp up period for LDN

To avoid side effects, and overdosing, the recommendation (I have a nice FB group with supportive knowledgeable people) is to start very low (0.3mg for me), and not increase the dose more often than about every two weeks IF you aren’t having continuing bad side effects.

Because I AM having (minor) side effects – when I change the dose (so far twice). And one of those is disturbed sleep – until you get used to the dose!

All I can say so far, after a month, and two steps on the dosing schedule, is that I’m tolerating the LDN.

And that there seems to be a positive effect on several areas, small, but I can’t REALLY tell yet, and, though I can work a bit longer at a time (‘work’ defined as ‘butt in chair’), I haven’t gotten enough better yet in achieving the level of brain functioning that I need to write reliably.

Something extra: it may help with walking, some, by diminishing the pain walking now causes.

What does the future hold?

Dunno. And LDN is NOT a cure for CFS or POTS or any of the other symptoms. Especially it is not known to be a cure for fatigue or exercise intolerance.

I have plenty of time – the move was the correct solution for so many things: social isolation, shedding the requirement for house and yard and vehicle maintenance, being prepared for when we need higher levels of care (it’s downstairs, and people there are still part of the community), better weather, exercise facilities (for my poor joints and muscles)…

My best hope is that these hours on the computer will start being my happy time again, my functional time, my ‘she has a brain’ time, and NETHERWORLD will get finished and published.

I’m spending a small amount of this current time in promotion – getting more reviews – and hand-selling. I will tell later if anything comes of any of it.

But there has been a LOT of change, and it takes time to absorb change and to adjust to a new system of everything.

I’m on it.

It’s slow – but I hope it will speed up soon.

And I’m still writing every day – yesterday I watched Bollywood wedding dance videos. For NETHERWORLD.

And how are you?


 

Finding readers who must be yours

DEMOGRAPHICS IS NOT THE WAY TO YOUR FANS

I HAVE BEEN WRACKING MY BRAIN since I got the idea for Pride’s Children. In the year 2000.

Because marketing is consumed by demographics – to women of a certain age and income; to children; to men who own pickup trucks.

From SnapSurveys:

Demographics are characteristics of a population. Characteristics such as race, ethnicity, gender, age, education, profession, occupation, income level, and marital status, are all typical examples of demographics that are used in surveys.
Mar 12, 2012
Birds of a feather flock together.

I need a different kind of marker

Something that has to do with the kind of reader people are, and the type of books they pick on their own.

When I get the chance to ask, my readers usually have some of the following features:

  • They have read a lot, starting in childhood
  • They have read classics – for pleasure – and were not forced to; books such as Jane Eyre and A Christmas Carol and Pride and Prejudice
  • They’ve read good contemporary books of their times – Rebecca and The Thorn Birds and Gone With the Wind and To Kill a Mockingbird and The Complete Sherlock Holmes
  •  Their repertoire often includes good SF and Fantasy, such as The Lord of the Rings and Dune and The Moon is a Harsh Mistress and On the Beach

But some of my best reviews have come from older men, and some of my best readers are young women, and my incredibly supportive fan is Marian Allen who is in my general age group.

How on Earth do you call that a demographic?

There are hints

One reader told me he had learned a lot about himself, and would be rereading.

Another has told me he was surprised to be pulled in.

Others have mentioned liking my writing.

Someone wrote:

you have managed the best instance of “the story is not finished, but this segment of it feels finished” that I have ever encountered

Many start, and put it off because they find a density they want to read slowly – and I wonder if they ever get back.

My return visit had me entrapped in Prides Children and I haven’t GOT TIME, but maybe just a little more…supper time… must go…one more section… but just wanted to say its VERY GOOD, and what an ironic and sharp eye you have for le mot juste, and the silence pregnant. Very enjoyable, no sign of the damaged mind but I resonate strongly with your main character’s memory lapses and undefined connections of perfect lucidity once connected for the more lumpen Elise! I have not yet reached her TV appearance but it beckons. [italics mine – the TV appearance is very early in PURGATORY!]

I poke at it with the damaged mind

I wonder why there hasn’t been more recommending to friends who read.

I wonder when Elena Ferrante’s mystique is debunked, and suddenly her work isn’t as good.

I wonder when there should be a niche for disabled/chronically ill authors, with a little bit of slack from the establishment – and they tell me they are not taking indie self-published authors, while there are few in the category who get published by the traditional publishers. A pro bono approach I could submit to.

I wonder when I watch younger, healthier authors putting gobs of time into keywords and marketing and boxed sets and book magnets and publishing more books – and there is no way in h-e-double-hockey-sticks I can do any of that.

In this, my model, if you like, is John Kennedy Toole, who didn’t do any of that, because he was dead. A Confederacy of Dunces was pushed by his mother after he died by suicide, and won a Pulitzer after it attracted (was forced onto) the attentions of an influential writer, Walker Percy.

I need a Mentor, an Influencer, someone with a Voice

And haven’t a clue how to get one.

I need to ‘go viral,’ when that is as intangible as you can get.

I need to do only the writing, and am told over and over that all authors want this, and should get off their duffs.

I think I would do a great deal better on the writing side if I had some confidence in ideas which might pan out – and that I could actually do.

I listen, I learn, I think. I follow, I read, I think more.

I’ll figure it out – or literally die trying. Morbid? Realistic?

I’ve started a hundred tiny brush fires, at great expense in time and effort. One of these days, one will burn down the fences.

And if you’re in one of my categories – or can add to that list – please let me know.


Thanks to Stencil for the ability to make graphics.

Also let me know if WordPress is causing you grief by putting in ads; supposedly the ones on a desktop go below the posts, but I understand the ones to mobiles can be intrusive.

Can you relate to imperfect characters?

HOW FAR MUST YOU MORPH?

Readers have always been able to switch gender; well, female readers have often had to – there wasn’t much to read with positive heroines when I was growing up, not in popular fiction – it’s amazing the number of women scientists who pay tribute to Nancy Drew in their background!

I’m sure the number is dropping, because there are more role models, and some writers deliberately create unrealistically powerful young women as characters, hoping to up the ante. (Yes, I’m perfectly aware of all the advances made in opportunities for women; but that the situation for women in physics, for example, is not much different from what it was in the 1970s when I was in grad school.)

The ability to imagine yourself as a shape-shifter or an alien is part of being a reader – and even more important when a lot of the characters are not like you.

Diversity is the Holy Grail

Though more honored in the breach than in the observance, still.

And readers are only willing to go so far before they’re not interested, requiring a modicum of something they can identify with.


Which brings up a post from late 2012:

Does your character make readers uncomfortable?

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 survivor 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 chronically ill/disabled characters make you squirm?

Still writing with ME/CFS years later

THE MORE THINGS CHANGE, THE MORE THEY DON’T

This is ME/CFS month again, for my nth time – and May 12th is ME Awareness Day again – as I’ve blogged about for several years now (since we got more activists and activism going, including Jen Brea’s Oscar-nominated documentary, UNREST).

And nothing much has changed – I’m still sick all the time (that’s what chronic means), and have no energy, and don’t get much done, and don’t get what I want to do done, and all that jazz.

So I found a wayback post from Feb. 2013 that describes almost exactly the same thing I still live with. No capacity to learn – or rather, no capacity to retain enough energy to make good decisions.

And I’m six years older, which doesn’t help (unless you’re 13 and desperately want to get away from home). We ME/CFSers are not spared the vicissitudes of aging, and are probably much less capable of putting in the effort that might stave off the ravages of time (exercise, putting energy into good living and good eating, etc.) than those whose life circumstances are easier.

I say easiER, rather than easy, because Life isn’t ever easy (ask any cosseted princess).

Remember I don’t do much editing on these oldies but goodies, but it is proof of nothing much changing (except moving to California!!!) yet.

I’ll let you be the very first to know if something improves!


Writing with ME/CFS #1 – surfing the web for THE ANSWER

********

CAUTION: These posts tagged CFS are a product of my struggle to write in spite of a chronic illness that has brain fog as a side effect. They are probably not interesting except to people who live with/try to write under similar circumstances. They are not intended to be whiny – though they will often sound that way. They are intended to be factual, and to help me find workarounds.

I wouldn’t bother except this is my blog, and I need an outlet, and a small subset of readers may find something helpful. Writing helps me sort things out. You have been warned! Welcome!

********

The mornings when the psychic energy to block the web is missing,

I roam the small set of sites I follow, looking for someone else to give me words to read.

Today’s excuse was that DH called me from work before my brain was on: he’d left important papers in the front hall and a frantic romp through two computers and a memory stick were required to email him usable copies. Other days it’s been a call from a doctor’s office requiring me to do something immediately, or a call from my dad needing a bank transfer…

I’m seeing a pattern here: whatever the attention-consumer is must be dealt with RIGHT NOW. PWCs (persons with CFS) have a much smaller amount of usable psychic energy – which I will define as the ability to MAKE myself do something as well as the ability to ACTUALLY do something – than normal people. It’s part of the brain-fog problem. If I could jot the interruption on a sticky or my ‘gathering’ sheet or type it into Things – and deal with it in the normal course of business (maybe today, maybe not until next month), it would lose much of its power to consume. But I can’t – this is an EMERGENCY and must go to the top of the list. Worse, it must be done NOW.

Somehow, I come up with the energy to deal with what needs to be done – and it gets done – but there is an aftermath, a surcharge if you like, and the accomplishment is followed by a period of being awake but completely non-functional. We PWCs really can’t afford adrenaline – it takes much longer to metabolize it.

During that aftermath I often surf the web.

I’m looking for THE ANSWER. What’s the question? Who knows – who cares? Something in me wants someone else out there to tell me what to do, now, in such an authoritative way that it drags my mind out of the hole and gets it to work again.

There’s nothing there. I have a file where I record the ‘nuggets’ gleaned from surfing, the things I am absolutely grateful I have discovered. A short list (Dec. 2012-Jan 2013):

I: Standing desk, walking desk [PV + comments]          3:02 PM
I: Boomer Novels – and Boomer Cafe website [PV]       9:41 AM
I: Sworn Secret,  Amanda Jennings [Dead Guy – Lynne Patrick]
E: Friend – Have started Freedom: IT CAN WAIT        11:17 AM
I: Sharon Reamer. Good book video, cover [PV ->]    12:27 PM
I: Dropbox – saving your information         [PV?]          12:27 PM
I: Reviews [PV], bloggers charged with defamation    12:29 PM
I: Decision fatigue – and sugar!

I: means the nugget came from the internet, E: that the information was in an email. PV is thepassivevoice.com.

Looking at the list,

I can see that many hours of surfing went into relatively few really critical pieces of information – and ALL of them could have waited. Until the day’s writing was over, at least, or until the next day. In the case of late ones, I was surfing instead of going to bed, thus mortgaging the next day’s writing, for the relatively small pleasure of today’s surfing. I KNOW these things – it’s a little daunting to see that my precious nuggets are so irrelevant.

Back to the question of Why? I think it is because, like playing solitaire or sudoku or a million other games, the ability to do something that looks as if I’m using my brain – ie, being human – is required to keep me sane. And I have used up the ability to be creative, so I settle for the APPEARANCE of creative: Look – I solved another HARD sudoku puzzle! I’m ME. I’m functional!

This is data.

I don’t think I’ve put it quite this clearly before: human brains WANT to create, to ‘do something useful with their time.’ If I can’t have real, I will settle for apparent. It’s Catch 22: if I have the energy to get myself out of the loop, I’m not IN the loop. If I’m IN the loop, I don’t have the energy to get myself out.

I’m learning. I can restore SOME functionality when I can put myself down for a nap. Afterward, most of the time (depending on the surcharge), there is some restoration of functionality for that day, that time – I may even get something done.

THE ANSWER: to be normal.

It’s not on the web. It’s interesting that after 23 years I still look for it. The brain wants what it wants: to be the way it used to be.


It’s over 29 years now.

Still here, still broken, still trying to find an answer I’ll remember when the brain refuses the jumps.

I am so boring!

Why do you surf?

Where do liebjabberings visitors come from?

Visitors Feb. 18, 2019, to my blog liebjabberings came from US, Canada, India, South Africa. Australia, Malaysia, France, UK, and the Philippines (graphic shows country flags from my stats page) New countries to blog 2:19:19

Mar 3 new countries

SOME DAY THIS WILL MAKE A DIFFERENCE

And meanwhile, visitors are welcome from anywhere!

Stop and say hello – comments welcome. I’m going to steal the following from a fellow blogger: I like to have the last word, so you’ll always get an answer. If you don’t, know that I still read your comment – and decided to let you have the last word on the subject (at the end of an exchange, usually).

Things are getting a little less crazy around here.

We went to visit our kids in Boulder, Colorado, and had a lovely long weekend.

Then we came home, and I had an old friend visit for two evenings – she arranged her life to be able to visit, and it was so good to see her again. We go back 50 years+!

And then came the visit to the new, nice dentist – except that he had an emergency, and the total time dedicated to an appointment which was literally across the road came to over four hours – and I get wiped out by long out-of-the-house events.

I don’t care – all these were desirable (I love dentists who don’t find anything needing doing, even when a bit of a porcelain crown cover came off) – and much appreciated visits with loved ones.

I’m getting to the new stuff.

One of the residents here, of the several who have read Pride’s Children: PURGATORY, chatted with me this afternoon about her reactions to it – and has offered to connect me to her book club. Book clubs are wonderful ways to get word of mouth out to serious readers, and I look forward to maybe even visiting some of the many in our new city.

I get so few opportunities to just talk and answer questions about my writing (one tries not to be a pushy author) that it was a real pleasure, as well as good for the soul. She got so many things about the work.

One of my main questions – because it’s a trilogy – is always whether readers were unsatisfied at the end of what is known to be the first volume, and feel cheated in any way. She said no – but she can’t wait for the next one – which is balm to my senses.

She also said she had trouble putting it down, and for someone whose nightly habit is to read a bit with her doggie settled in her lap, and then go to bed, I find it cheering to be unputdownable.

I ordered and received a proof copy from Amazon. Createspace has closed, and the automatic transfer to being printed on demand by KDP (?) has to be checked out. The cover looks fine (except that it says ‘proof’ on it, right through the middle of Kary’s head), but I need to compare the paging, and look for the few errors that have been corrected, and make sure they are using the latest file. Due diligence. Then I’ll see about ordering some replacement copies to have as my pre-move supply has all been given out at our new community.

And the usual small problems.

My .mobi electronic ARC has NOT worked for the last two people I sent it to, which means Kindle changed something, and I need to re-create the file to send out for reviewers. There are few things worse than getting someone to read and review for you, and to send them a file they can’t open!

It is irritating to have to spend energy on something that was working fine. And it means going a long way back, and worrying about the version of Scrivener (I have v3, and haven’t updated to it yet), and figuring out a bunch of things such as Compile for ebooks…

I just found my writing books – I used to have them at my right hand while writing, but haven’t since everything was packed and shipped: what have I missed and will it show in the new scenes?

I still haven’t recovered from last July’s crash.

I can’t remember where I was on so many little details of life. And writing.

But this is the last move

before I finish the trilogy – if I have anything to say about it. And the good Lord gives me life and brain.

Things can only get better – I’m excited at the possibilities, and cheered by finding readers here.

I will get my software, computer, and backups under control. I’ll keep writing, and make the progress I had hoped for from the new digs.

And go swimming.

It was always about the pools.


Does your future have pools?


 

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.