Monthly Archives: May 2018

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.


 

Advertisements

Boosting Jennie Spotila’s post on dancing

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

TODAY IS ME AWARENESS DAY

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

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

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

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

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

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

Please read her whole, excellent post.

Dancing is a human right

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

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

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

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

Dance excerpt 1, PC1, Chapter 16

Dance excerpt 2, PC1, Chapter 16

I kind of like this one.

I REALLY miss dancing.

Shall we dance?


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


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

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.


 

Donating royalties for May 2018 to #MEACTION

Computer, coffee, phone. Text: May 2018 royalties for ME/CFS, Put us back to work, Please, Alicia Butcher Ehrhardt

May is ME/CFS Awareness Month – the big day is MAY 12th.


ALL  PRIDE’S CHILDREN:PURGATORY ROYALTIES DONATED TO THE #MEACTION FUNDRAISER FOR MAY 2018.

This is my contribution to the campaign – as a writer.


Please pop over to Pride’s Children’s blog if you haven’t seen the post (same as the Facebook post) – and consider getting or gifting a copy – this disease has millions of us WORLDWIDE missing from life. We’d love to get back to work!