Tag Archives: self-awareness

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


 

 

 

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My funny 2017 Thanksgiving Day story

THE CLUELESS WRITER STORIES

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

Out of the blue

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

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

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

Write it down, Alicia!

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

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

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

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

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

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

Disaster averted

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

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

I hope ONE of us would have noticed by then.

Happy Thanksgiving, my friends.

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

The writer comes from somewhere

Ernest and Pepita Butcher

THE BEST START ON LIFE YOU COULD GET

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

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

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

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

And we hope we are passing it on.

The okapi flies the empty nest

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

GOOD PARENTS PREPARE FOREVER TO LET GO

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

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

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

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

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

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

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

Home will be no more

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

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

So much unfinished stuff when the last child leaves:

movies
scrapbooks
pictures
and a whole life.

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

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

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

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

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

She is a grownup.

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

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

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

‘Home as prison.’

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

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

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

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

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

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

Dealing with Non-24 SWD

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

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

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

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

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

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

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

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

I want to be free to be me now.

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

What we have children for

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

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

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

The ride has been magnificent.

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

She will be fine.

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

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

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

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

Vacation and chronic illness: the goal is survival

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

WHAT IS THE GOAL OF VACATIONS?


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

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

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

In no particular order:

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

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

But what is, is.

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

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

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

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

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

Getting around at the resort

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

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

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

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

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

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

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

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

Don’t sweat what you can’t change

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

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

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

The cost to a chronically-ill person

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

The small things accumulated steadily.

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

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

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

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

Would you do it again?

As often as possible.

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

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

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

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

I hope this brings me back to writing renewed.

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

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


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

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


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

Share your challenges with ‘vacations.’

Allowing myself to write, not forcing myself to write

Report from October 1, 2013:

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

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

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

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