Category Archives: Learning to walk again

Everything I have learned or figured out to regain complete control of movement; yoga and other aids to flexibility; exercises I have found or figured out to retrain muscles, ligaments, tendons, and skeleton so that I can walk like a human (goal: return to hiking, hike in the mountains around Seattle and in Parks, National and otherwise); and everything connected with regaining shape and stamina.

Real Fiction: How to develop empathy

Girl holding heart made of lights at night. Text: Use Real Fiction (trademark) to develop empathin vicariously. Alicia Butcher Ehrhardt

EXPERIENCE MANY LIVES VICARIOUSLY – BY READING

Let’s start somewhere

NOTE: None of what I’m about to say is meant to ask for help or pity, and certainly not for special privileges. Just understanding. JUST. And, among those whose lives isn’t constrained, both happiness for what they have, and a little of that empathy for those who don’t have it.

Even though political events have made this development more urgent, I’m not going there: better writers than I are doing that right now.

I’m discussing the part of empathy associated with illness, chronic illness

When friends seem surprised that I’m still sick, I want to respond as a character in my novel, Pride’s Children: PURGATORY does:

“Has the word ‘chronic’ been marked in dictionaries as ‘Archaic’?”

They don’t ask this question of people who have ‘real’ illnesses such as Lupus or MS or Rheumatoid Arthritis, do they? If someone now lives with HIV, friends usually understand that there is no cure, and remission is bought by a DAILY regimen of pills under a doctor’s care.

They understand that many mental illnesses are chronic, and also managed with a drug regime – every TV viewer has seen the TV writer’s trope: a violent person who is turns out is to be pitied because he has a mental illness, and is ‘off his meds.’

Invisible illness – can’t see it, must be fake

But if you have one of the invisible illnesses, ME/CFS or FM or Gulf War Syndrome, that are not understood because they have been disbelieved by medical ‘professionals’ in general, you are expected to have made a miraculous and convenient recovery using supplements, alternative medicine, acupuncture, specialists, exercise, diet, or yoga, and are now back to full health because, the groups’ sick in-joke, “You don’t look sick.”

‘Chronic’ thus means ‘inconvenient’ to those inquiring, “Are you still sick?”

It doesn’t mean, ‘needs continuing care for symptoms that wax and wane and never go away.’ It doesn’t mean, to the friends, ‘let’s not forget her because she doesn’t have the energy to make new friends.’

And it doesn’t mean, ‘Advocate for her, because she doesn’t have the energy to do it for herself.’

Then something happens to THEM

And it is too late; they get a crash course in empathy – or not.

Until the ill one is their child, their spouse, or their parent or grandparent, and they have to provide or arrange for whatever care is necessary, ‘chronic’ is just plain inconvenient, unless it is also ‘malingering,’ ‘gold-bricking,’ ‘laziness (she’d get better if she just got out and exercised),’ or ‘playing the system so she doesn’t have to work.’

And then, unfortunately, once they understand, they are too busy to be useful – because they are taking care of said loved one, and the now know how much energy it takes to do that, and have little left for the advocacy that is so desperately needed. Catch-22.

Which brings me to the point of this essay:

There have to be other ways of developing empathy than suffering chronic illnesses in your own flesh.

One of the best – and highly underutilized – is fiction.

But not the special books for children – barely disguised non-fiction

‘Little Tommy has Cancer’ or ‘What Does Ostomy Mean’ or ‘You have diabetes – now what?’ – designed, usually, to help the child, school, teacher, or close friend understand what is going on with the child.

Not usually meant for the world in general, such a book might have a cover picture of a kid in a wheelchair, or with an oxygen supply device, or getting a shot. These books are necessary for the ‘different’ ones, the same as the Barbie with crutches is meant for the different child to see herself (as both handicapped AND held to impossible fashion standards).

They are less frequently bought for the kids who don’t have the disability, disease, or impairment – but are there in the library if necessary. These aren’t the fiction I mean, because they’re barely fiction.

Nor books (or movies) intended to promote suicide as noble

Those are just disgusting: if someone becomes broken their best option is to find a way to tidy themselves out of this world so as not to inconvenience their ‘loved ones.’

Ask any real family affected by suicide whether they feel loved by it.

Million Dollar Baby, The Ocean Within, Me Before You – it has become a trope.

I reserve judgment in the case of ‘intractable pain or depression’ – and I could not possibly judge the person who chooses this exit if it is truly intractable – though I often hope it means they have been unsuccessful at finding help. It is not a matter for fiction, because fiction always conveniently leaves out the real details. Horribly depressed and wracked by pain people can and do have ‘quality of life’ in many cases – when their need to stay alive for those same loved ones is their prime imperative. YMMV.

Alternate preventive empathy development made easy via REAL FICTION

In Real Fiction (TM) of the empathy-developing variety, characters happen to also have a disability, illness, or difference – but it isn’t the focus of the story, while always being there.

Real fiction offers the reader a way to understand without being personally overwhelmed.

The writer can go into the thoughts of the character to show inner strength balancing outer pain.

The reader is thus safe to explore the consequences and conditions set up by the writer, to understand more, to literally be a voyeur – or in modern parlance to inhabit a virtual reality – that allows the reader to experience the life of a disabled person from the inside.

This alternate reality is temporary, and can be left or abandoned if it becomes too much for the reader to bear.

Fiction allows the small details that are important to the character to emerge, rather than be lectured about.

A great example is the book (and movie) Ordinary People, by Judith Guest. A family tries to understand why their son attempted suicide – and the family dynamics digs down into the real cause.

Pride’s Children is designed to be REAL FICTION

One of the main characters is a former physician who has CFS (ME/CFS), and is no longer able to practice medicine (which requires energy and brainpower), but has retrained herself as a novelist.

The story shows the development of her change in the area of personal worthiness for her goals, triggered by an accidental meeting with a charismatic actor which then affects her whole life.

Is she correct in the assumptions she’s taken on as to her own value as a PWC (a person with CFS)? Will chronic illness limit the rest of her life? Can she hope for and desire what ‘normal’ people are allowed by society to want?

At least you don’t have to get sick to find out. You will just have to read.

And be patient. It’s taking the writer a while to finish the story.

What’s your favorite vicariously-lived life? Who would you have liked to really be?

Do not allow Old Lady Medicine

Tunnel looking up at sky. Text: Don't accept old lady medicine. Your future is at stake. Alicia Butcher Ehrhardt.DOCTOR’S EXPECTATIONS DETERMINE YOUR MEDICAL CARE

Fight for your life and your chances

Husband hands me a magazine, the Health Check that our local hospital, Robert Wood Johnson at Hamilton (formerly Hamilton Hospital), sends out to everyone whose address they’ve ever received for any reason.

In it, it talks about the McKenzie method – a way for people to reduce back pain and sciatica by doing a series of exercises which reduce the pain and then strengthen the back.

And the suggestion to do this is given by the orthopedists for a woman who is ‘a dancer’ and very active. So she avoids surgery. And they are proud of themselves because they helped her ‘avoid surgery’ (PS: she had the same diagnosis I did, spondylolisthesis – vertebrae out of alignment).

THEY DIDN’T EVEN MENTION THE EXERCISES TO ME BEFORE SURGERY.

I was over 50, and had CFS already. I told them EVERY SINGLE VISIT that I wanted to walk properly again. They didn’t even send me for PT for walking.

Be warned: what comes is something you should know: doctors will make an arbitrary decision when you come in about whether you should have the ‘treatment for those who have a chance’ or ‘old lady medicine.’

And it will affect the rest of your life.

McKenzie back exercises

I do them every day. The book is called ‘7 Steps to a Pain-Free Life,’ by Robin McKenzie, an Australian physical therapist.

My PT taught me them – AFTER the orthopedic surgeon ruined my back.

When I wake up with sciatica (much less frequently now, and usually due to lying on my left side while asleep without the little pillow – for some reason that side doesn’t like flat), I head for the floor, and, within minutes, start working the vertebrae back to the non-painful position.

They wanted to operate again; all three of the surgeons I consulted – different operation each. I walked away. Still working on getting better at walking, but the surgery took me a YEAR to recover from, and had me back in the ER for non-existent pain control, so I’m not likely to repeat.

Why are older women more vulnerable?

Because, among other things, it’s easier. Cut, get fee, blame lack of success on the patient.

They don’t expect us to improve with exercises, or to do them, so they actually give us less useful PT (warm compresses?).

If you have an older relative, especially a female one, watch for this: the key is to DO YOUR EXERCISES – and to insist they give you ones which work – just like the ones they gave the young lady, or the teenage athlete. They will hurt, but it should be bearable if you’re doing them right, and it gets better. Takes me less than fifteen minutes on a really bad day, and I do them daily prophylactically.

Ask for ‘young woman exercises.’ Tell them you’re aware of ‘old lady medicine,’ and you don’t want it. Stay away from surgeons as long as possible – once cut, things are NEVER the same (there’s a whole section of my abdomen where the C-section left me with no feeling, and the hernia above my belly button has been ‘repaired’ THREE times – and is back).

Wish I could go back in time. What do you think?


Today is the last day of the 0.99 ebook sale for Pride’s Children (upper page on the right).

My morning walk through my Internet village

A pink-soled sneaker being tied onto a foot; Words: Every morning I take a walk and stop to say hi to all my Internet friendsSURFING? OR FREEDOM FOR PEOPLE WHO DON’T GET OUT MUCH?

What other people do so easily, would be impossible for me: I’m technically retired now, though the last 25 years of my working life were spent on disability, and I can’t just ‘go out for a walk’ like healthy people my age.

I’ve recently gotten to the place where I can walk more, but it isn’t easy or fast or convenient or unassisted, not like when I used to go out the front door, turn left (or right if I wanted to add an extra bit around the cul-de-sac), and just go, walk wherever I happened to decide, and come back when I’d had some exercise.

But I do something similar when I get on my computer in the mornings, and, while I’m waiting for the morning’s caffeine to decide if there are going to be working brain cells today, I walk around my Internet neighborhood – the sites on my navigation bar – and see what’s up.

Procrastinate first, except for the rare days when there’s something my limited brain can do in the writing department before it is warmed up. I’ve tried – nothing seems to work – so I’ve decided to enjoy my morning walk, do it as efficiently as possible, and not fret about the time wasted/spent. Angst is not helpful, so I don’t bother any more. And I almost never add any new stops to the navigation bar.

HOME COMPUTER: Email first – well Duh!

I check email several times a day, and make sure to deal with what I can asap, as friends write, and several newsletters show up with something new, and often a quick response saves much time and effort later.

Plus, as you can tell, I like to write back. Gets the brain moving and the fingers wiggling.

Sometimes I find responses I needed from missives I’ve sent out to friends or other sources, and know I’ll be able to move something forward.

Occasionally, I have to do something, such as go to the basement and read the numbers on the meter for the solar power system, near the first of the month. They can’t do their paperwork until they have my input, so it gets a high priority.

FIREFOX: First stop on the Internet are my own blogs

I refresh the page, and the thingy in the top right hand corner will tell me if I have visitors, and if they’ve commented. New comments on the blog always get first priority

First stop after 9AM – TPV; if much earlier, do this later

I stop by The Passive Voice for the morning publishing news (and several times more during the day because Passive Guy puts up five or six posts every day). It’s like a visit to a cafe where you get good commentary, and rude people aren’t tolerated. We mostly stay on topics related to publishing and books and such, but David has an interesting mind, and gets stuff from lots of places.

Extra points if posts have a comment at the bottom from our gracious, handsome, and intelligent host – his wry humor and delicate satire are things for joy.

People send him stuff. He is a good host, posting an excerpt – and a link to the original. He is careful not to ruin the original post, while giving you enough to decide if you’re going to visit it.

On most blogs, comments need supervision, and are often not worth the time to scan them; if you don’t read the comments on TPV – and subscribe so you get the late ones – you’re going to miss things. Useful things.

WU – ‘about the craft and business of fiction’

I stop by Writer Unboxed most mornings, at least to get a quick look at the topic and the post’s byline. I skip Flog a Pro – kind of hate the idea of people feeling they can freely trash work they couldn’t produce; mean-spirited and negative some times. Not me. Other bylines or topics I know I won’t respond to from the title or a bit of the post, I skip; otherwise, I read the post.

I consider whether there’s anything I’d like to add to the discussion (there’s usually a question or two at the end of the post as a prompt); I leave my little addition to world literature or my (usually different) take on the subject, read those of other people I recognize, and maybe pop back later; I like posters who bother to come back and join the discussion better, but not all of them have/take the time.

FB – for friends and support groups

You get out what you put in on FB. You are a contributing member of a community – or not. Since one group is a support groups for people I know have extremely limited energy, that group’s members get a pass – some can only afford to post when desperate, and we all respect that.

My group of friends is small, and I don’t sell or proselytize much – that’s not what friends are for. My blog posts automatically on my personal FB page; if there’s anything that the groups might find useful, I cross-post them on the group page. A little goes a long way.

I check out any friend requests – most are obvious spammers – easy to tell (and block permanently) if I take a peek at their page. I’ve even reached the point of checking with the ‘friends in common’ if a friend request is odd and unexpected in any way.

I have no author page – yet. It would be one more thing to maintain – maybe if it seems a good idea later.

CHROME: GR and my British friends

A daily stop, maybe several times, is a nice bunch of people on Goodreads in the UK Kindle group who have made me feel welcome. I’ve read enough British authors in my life to practically qualify on that alone. Occasionally there will be something in my inbox from a GR friend.

I usually save those for later response, but almost always read them right away.

The notifications function provides a quick way to keep track of the threads I comment on or read.

The comics – and Dear Abby

And I’ve had my bit of entertainment for the day; I have them set up for easy refreshing on the Chrome browser, and can update and read and pass on good ones to friends with a few minutes’ effort. Doesn’t that happen to you? A comic just makes you have to send it to a particular friend?

Extra points when the friend later emails back that it was especially appropriate or welcome.

The daily brain puzzles – measuring brain speed (if any)

Usually the last stop on my little trek, I set up a few hard sudokus, maybe do one or two, to gauge whether my brain is starting to work the way I need it to work for writing fiction.

I’m looking for a completion time below seven minutes; and I monitor, with a partial brain, how the math processing is going. I can literally feel it when I’m not tracking – I can still do them most of the time, but they feel like slogging through mud, and take forever. The CFS brain fog is clearly at work here; sometimes it won’t go away. I can work a bit, but it almost isn’t worth it without a brain. I’ll get ten minutes worth of writing done in three hours.

Yahoo news

If it makes it to Yahoo, I take a quick scan; other news items will show up in paper (The Economist and other magazines), or someone will boost them on FB, so this is really a desperate measure to find SOMETHING to read before I have to (want to/have to) get to work.

The end of the walk – home again, home again, higglety pen

After a final quick check of the emails, and possibly TPV depending on timing, and a superquick and usually pointless visit to Amazon’s pages that show book sales, I grit my metaphorical teeth and start up Freedom or Anti-Social to block the internet for my available writing time.

Then have chocolate protein shake, and take First Nap (sounds counterproductive, but isn’t – search for ‘mental dialysis’ posts), and when I wake up again and come back to the computer, the writing is sitting there ready to go, I’ve checked out that the whole world is okay until I have time to look again, and I don’t even think about all my friends for hours.

Turning into a routine makes it much more efficient than it used to be.

Keeps me sane.

And productive.

And connected – the most important part of all. My internet friends are REAL friends. I just maybe don’t really know how tall they are.


Thanks to Stencil for images I can create or edit.

Do you have a morning computer routine?

Vacation and chronic illness: the goal is survival

PB021370.JPG

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

WHAT IS THE GOAL OF VACATIONS?


***** 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 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.’

Is my prose too purple, are my metaphors too wild?

Is my prose me?

Too purple? Are my metaphors wild? Or barely leashed? Or me, writing in passion?

Could anyone else write them? Then no, it is NOT too purple.
It isn’t purple at all.

Point is, it doesn’t matter if metaphors carry all the truth, only that they carry some truth. No analogy is perfect – they all fall apart when poked too hard – but that’s not why we use them. We use them for the gut feeling of rightness that comes from explaining the unknown in terms of something we DO understand, even if we grasp it only for that moment.

Writers are unique, one of a weird kind

Continue reading

May 12 is International ME/CFS Day – Rant

You’re still ill?

It’s May 12 again – and, for another year, CFS – or ME – or CFIDS – or Yuppie Flu – or whatever the heck this is, it’s still with me.

Another year has gone by – and today is one of those typical days when I question my own sanity, because my brain is like a broken clock: right twice a day. You all remember analog clocks, right?

And too many people think that if you have something for a long time, it must disappear. It doesn’t – I do. I just stay home, do the few things I can, don’t give anyone any trouble – that takes energy I need for more important things like breathing.

I don’t know what the researchers are doing, but all the people I know who have this THING, the people in my real-life support group and the online one, used to be productive, hard-working, tax-paying citizens – and now the majority of us aren’t.

Living with CFS

I manage this – as well as I can. Continue reading

Writing someone else’s pain

How writing pain out serves the writer

I realized recently that one of the things writing does is to serve as a break for the writer.

For the few hours dedicated to writing, a writer who needs it can block out her own pain, the pressing need to make her own decisions, the major and minor tragedies of her own life.

During the writing time, it’s all about the characters’ pain, decisions, tragedies. Those parts of the psyche that are dedicated to dealing with Life, and which are sometimes raw from that dealing, get a break, a respite, time off. Continue reading

Official confirmation: this writer’s life is circular

On the general principle that if you can’t find something to read, you should write something, I go to the list of ideas I have for blog posts, all, as in a seamstress’s workshop, in various stages of completion, lying around draped over forms and mannequins and furniture.

A gray chinchilla being hand fed her treats.

Treats!

A year goes by – everything is the same

I find this, from almost exactly a year ago: May 7, 2013 10:19 AM. [NOTE: I never turned it into a post, but I’m fidgeting because I can’t write, it’s raining (and I got the last of the garden fertilized this morning, and there is NO energy left and major brain fog), and it made me chuckle to see how little has changed.]

At Madgenius.com, Amanda Green complains It’s Tuesday, where’s my brain. I start writing a comment. It gets too long, so I bring it to my own place:

I’m feeling a bit snarky, too, it being Tuesday.

Before I comment, I want to say that
1) I am not minimizing YOUR pain
2) I do not want sympathy/pity/whatever. Okay?

Continue reading

In what universe is it funny to push a woman in a wheelchair off a stage?

“Now that the Britannia Awards are televised, viewers can see Sacha Baron Cohen knock an 87-year-old woman out of her wheelchair”.

Comedy depends on surprise; that’s not a problem.

Crossing the line.

Making fun of people in wheelchairs is a disturbing continuation of making fun of people who are in any way different.

It is acceptable for a comic to make fun of himself, or a comedienne to use her personal life as a basis of her act. Continue reading

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

Incrementalism: the art of fine-tuning change

I call incrementalism a basic principle of life: if you don’t work every day to make it better, it will get worse. ‘It’ can be anything at all.

Not all change can be effected by a sweeping pronouncement: “I am quitting smoking as of now.” “I will never think of him again.”

Instead, most changes fall in the category of ‘a little bit better’ or ‘a little bit worse’ every day. Continue reading

I am NOT a disabled person: words matter

I went back to read a comment I had written on a blog, to see if there was a response, and I got horrified at my own words.

As a shorthand, I had written:

“‘Well’ people don’t SEE disabled people, and they don’t see them as mattering. They don’t see old people. Because every well person is scared to death of ending up disabled.”

I MEANT to say ‘PEOPLE with a disability.’ NOT ‘disabled people.’ Continue reading

Two-year anniversary of the scariest decision I ever made

I can’t let the month of May, 2013 go by without marking the two-year anniversary of one of the most difficult decisions I have ever made.

~ ~ ~

Before I go on: I have no medical training. This is a story. My story. It is not a recommendation – and I may be the most foolish person to ever live for having done what I did.

Read if you like – but see your own doctor, and make your own decisions.

~ ~ ~

In May, 2011, heavily overweight and in fairly constant pain, unable to walk properly even with a walker, I received the news that an MRI showed further spinal disc degeneration ABOVE and BELOW the L4-L5 spinal fusion I had received over four years previously.

To tell the truth, I never properly recovered from that surgery, and now they were telling me I needed more – and that the problem would probably progress, and I would need further surgery later. They told me to schedule the surgery, that it would only get worse.

I walked away from that orthopedic surgeon’s office – and never went back.

That’s not the scary part.

The scary part is that somehow I made a decision to seek my own solutions – and somehow I won.

headstand

These photos are my proof. Continue reading