Category Archives: Chronic Fatigue Syndrome

Queen Cover

So, I’ve wanted a cover for my novella ever since I started putting it up to read on Wattpad last September, but finances are super tight and I wasn’t sure that would be possible.  Ideally, I wanted an illustration for my cover rather than stock art, but illustrated covers are by far the most expensive and my max budget for a cover at this point is $100.  So when I saw that Natasha Alterici had posted on Twitter that her freelance gigs had fallen through and she needed quick cash for her rent, I leaped at the chance to make one of my dreams come true.  And boy, am I ever glad I did.  Behold the awesome:

I have also been intrigued by Amanda C. Davis’ recent forays into designing covers for DIY practice.  She’s been tackling all kinds of covers, and I previously let her know that I was interested in her giving my novella a shot.  Am so glad I did that, too, because my laptop has been giving me all kinds of troubles, and there’d be no way I could do the cover design myself right now.  As soon as Natasha got back to me on the final cover, I sent it Amanda’s way.  Amanda posted her design/learning process here.

And here it is in all its gorgeousness:

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Art by Natasha Alterici.

Design by Amanda C. Davis.

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Faraday & Illness

Today I tweeted:

I remember how horrifying it was to turn around and suddenly not remember things that were basic and intrinsic to me.

Like trying to walk on a leg that suddenly wasn’t there.

It wasn’t “oh, where did I put my car keys” it was “what are the letters in the alphabet?” “How do I type again?”

And what cartoon Faraday says about not being only to hold the whole in his head but only things in parts, that’s exactly what it’s still like.


Queen 3.0

Continuing to write up a draft log until Queen is either accepted for publication or else put into a drawer, since I’m finding the process both enlightening and useful.  (I’d hate to say “trunked” since I may still pull it back out again later, who knows with this one.)

September 2013.

Sent Queen off to a handful of readers who volunteered after my post requesting help.  Even though this is not a novel but a novella, I was not confident I’d hear back or that those who read it would like it, considering the story matter.  But nothing ventured, nothing gained.  I then distracted myself by writing the rough draft of a 7.5k short story in 2 weeks, completely surprising myself that I managed to pull that one off.  I really needed it, though, both the story and the success in writing it so quickly.  (It was also short-listed in October which made me so happy. I am so grateful for that, too.)

November-December 2013.

November, I heard back from the one reader who ended up sending me feedback.  In December over the holidays I questioned the family members who had also read it for second opinions about how certain things played out, just so I could get some rough sketch about what direction to take revisions in.

I’m not going to lie, I got really discouraged.  And it wasn’t so much the idea that there were still revisions to do that was discouraging as the realization that I would have very little help or feedback to revise with.  With so little interest in the story or follow-through from the volunteers, I had to decide whether it was worth pursuing this story, dumping more of my resources into finding help for it, or calling it off.  While trying to decide, I took advantage of #Pitmas to learn how to write better pitches.  I didn’t place, but I did learn more about pitching, thanks to Amanda C. Davis‘ help.  (If you haven’t read any of her stories, you’re missing out.  She’s a fantastic person and superb writer.)

It’s also worth noting that I was EXTREMELY burnt out from churning out 50k of non-fiction in November on top of my chronic illness.  That was an incredibly unwise grind I put myself through, but like all folly-filled experiences, I learned a lot from it.   Still, not very happy months, writing-wise.

January 2014.

I tried to revise Queen for about a week, the second week of January after returning home from the holidays.  I was still so burnt-out and exhausted, though, that I gave that up after a week of very little progress and even more discouragement to show for it.  I realized that I can’t edit/revise on an empty well.  The next week I started drafting a follow-up story to the short story I wrote in September, and instantly felt better and became happier.  I modified my goals to writing a little bit each day, resting and recovering from burn-out.

February 2014.

Still, my original plan was to submit Queen to World Weaver Press during its open submission period in February.  I wasn’t going to let my discouragement stop me completely.  Besides, I’m never going to get better at writing queries if I don’t practice writing queries.  So, fully expecting not to actually pass the query phase, I retooled my query for the third and  fourth time, sent it to a friend who helped me get it into its fifth form, and smacked on the requested first 5k and sent it off.  And now as I write this, I’ve just received an e-mail saying they would like to see the full manuscript plus a synopsis.  Like pitches and queries, the last synopsis I wrote was about 7 years ago and it was absolutely terrible.   So now I get to finish revising and draft a passable synopsis (hopefully not a terrible one) in a reasonable amount of time.  Hopefully by the end of this week.

If nothing else comes of this, I am glad of two things: One, I wrote a query that squeaked me by into the next stage, which I was completely not expecting to pull off, considering how terrible my query started out; Two, that this novella is getting read, even if by only a few, and that it is teaching me how to pitch and write queries, how to write then revise a full story rather than just individual chapters.  I have learned and am learning a lot.  And even if this story does not make it into public readership for whatever reason, I needed to write it and I’m glad I did.

ETA: I used writing my synopsis as a tool to also help me revise for draft 3.0.  I’ve heard of people using outlines to revise and I think this is on the same lines.   It was like being able to take step back a few feet to look at a painting from far away rather than close up.   So that was encouraging.  I probably could have–or should have–taken more time to revise, but I wanted to get this submission package out by the end of this week rather than keep them waiting forever and my energy is not limitless and I did burn myself out working on this on Monday, oops.

April 2014.

Just got a very nice rejection for the story, and one that is perfectly understandable.  She liked my writing, the characters and the setting, but the plot and story structure wasn’t the kind she liked.  So, from here I’m going to do what I said I would.  I don’t have the means to self-publish QUEEN, and I need a break from it anyway, so I’m shelving it for now rather than continue to hunt down both a publisher that takes unsolicited novellas and one I’d want to work with.  From here, I’m going to focus my efforts somewhere else.

I won’t say much more, but I will say I’m glad I did this. I’ve learned a lot from the journey of crafting this story and recording my thoughts about it.  I’m also glad I wrote QUEEN how and when I did.  QUEEN is one of the stories I needed to write, but just because I needed to write it doesn’t necessarily mean it will be enjoyed or liked by all and sundry.  Is life, that’s just how it goes. 🙂

Until next time!


Insomnia Anecdotes

On my symptoms post I wrote,

Another symptom is insomnia.  When I was healthy, insomnia meant “not getting enough exercise that day” or maybe “thinking about too many things”.  Now insomnia means that my body simply has forgotten how to cross the threshold from awake to asleep. It doesn’t matter how many or how few my thoughts are. It doesn’t matter how much or how little I’ve done in a day.  Sleep is elusive. It comes on its own terms, when it comes.

I’ve been thinking about illness concepts that are misunderstood, trying to come up with what would be most useful to write about.  My insomnia is a concept I have tried explaining many times, to many people, in many different ways. I’ll admit to being frustrated that no matter how many different attempts I make, it remains misunderstood.  I guess there will always be concepts that are too strange or baffling, to the point that you just have to “experience it for yourself” in order to understand it.  The taste of salt is the example most often used for this idea.  How do you describe “salty” to someone who has never before tasted salt?  Childbirth is the other oft-used example, but childbirth has both the advantage and disadvantage as a metaphor here because it is different every time and different mothers experience it differently.

Here are the thoughts everyone thinks when I say “I had insomnia last night”:

  1. You must have been thinking of too many things.  Your head was full of thoughts or worry.  If your mind was clear, you could have slept.
  2. You did not get enough exercise.  You spent too much time sitting or lying around. If you had gotten more exercise, you could have slept.
  3. You slept in too late.  If you get up too late, of course you can’t get to sleep at night.  If you had gotten up earlier, you could have gotten to sleep earlier.

All of these make perfect sense if your health is normal.  When I was a child, I had a hard time sleeping if I was worried about something at school or afraid of objects around my room I saw taking new shapes in the dark.  I love physical activity, so that was never a problem for me.  But on the days I slept in, I definitely had troubles going to bed “on time.”  I just wasn’t tired, so of course I wasn’t going to get to sleep!

But sleep is different now.  Let me share with you a few anecdotes so you can see what I mean.

1.  You must have been thinking too much to sleep.

Story #1:

There comes a time at the end of a typical exhausted girl’s day when she is just too tired to think.  Now imagine this exhausted girl getting ready for bed, settling into her nice warm, comfy covers, and waiting to drift off. And waiting…and waiting…and waiting.

And waiting….

Still waiting….

Eventually she notices she’s not asleep yet.  She has no idea of the passage of time, only that she’s still awake.  Not the kind of “half-awake, half-asleep” awake, the kind where your brain fools you into thinking you have gotten no sleep whatsoever when in fact you’ve been drifting in and out for a while. I am talking about the kind of awake-waiting-for-sleep that happens when you first slip into bed.

She knows she has two choices.  Either she can get frustrated at her body and the situation or she can choose to enjoy the moment.  She knows from past experience that getting frustrated only makes things worse, so she chooses the latter.  She rolls over in bed, letting amused curiosity be her guide as she checks the clock.  Yes, indeed, she has been lying here awake for two hours so far and more is yet to come.  She snuggles into her pillow, enjoying the luscious feel of her cozy bed and thanks God that she’s at least someplace comfortable.

Snuggle, wait, snuggle, wait.

Eventually sleep claims her.  All is well and will be well if she can regain the sleep she’s lost.

Sometimes you can’t get to sleep, even if there are only very occasional ripples of thoughts in your head.

Food for thought #2:

There’s a difference between tangled, worried, repetitive thoughts–or thoughts your body is afraid of letting go of in order to drift into sleep–and good thoughts.

I am not saying that I never have the sticky kinds of thoughts, but I am saying that I know how to deal with them.  I will give more advice on that further down, but I want to point out an interesting phenomenon to you here.   Throughout my life, some of my best nights for falling blissfully to sleep have been those nights where I’ve toyed lightly with a new project idea.  Most recently, I came up with a new embroidery project while waiting for sleep to take me, and that was restful and lovely.  Twisting and turning ideas around in my head, discarding and shuffling through possibilities.  As a child, sometimes I would concoct stories for myself to fall asleep to, or plot out the next part in a story I was writing, and then get up and write it down the next day.  I would also give myself complicated math problems to solve. (I know, strange child.)

In other words, contrary to popular saying, complex thoughts themselves are not anathema to sleep.

2. You did not get enough exercise.

The idea here is that “your body isn’t physically tired enough to sleep.”

Every day I do at least 20 minutes of me-exhausting exercise.  That means I go until I get tired and worn out and dizzy.   I go to my limits, such as they are.   (Do you go to your limits in any given day?)

Then every Tuesday I also go to an hour-and-something long yoga class, to work on strength and stamina.   In my class, my legs and arms shake and quiver.  I get dizzy.  Sometimes I get nauseous and feel like fainting or throwing up.  I go and I do it anyway.  It’s even yoga on its gentlest setting, but you can’t get better without at least occasionally going to your boundaries and seeing what’s there.  You have limits, but those limits are also meant to be explored and tested.

If insomnia were about not enough exercise in a day, then Tuesdays at least I shouldn’t have insomnia.   But Tuesdays my insomnia ends up being much worse.

I know that doesn’t make any sense in your mind, but that’s just the way it is.  No matter how exhausted I am at yoga, afterwords my adrenaline system says “hi!” and then I’m wired the rest of the night.

Insomnia, in my case, is most often linked to doing “too much” not just the stereotypical “not enough.”

3. You slept in too late.

Story #1:

Let me tell you about my day yesterday.

Yesterday, as I write this, I awoke from a vivid nightmare around 10 am.  Being wide awake, I decided to get up, even though it’d taken me to 2-3 AM to fall asleep the night before.  That’s 8 hours of sleep for a sick girl who needs 10 in order to feel well, plus whatever baggage from the day previous.   My adrenaline system decided to kick in and make me jittery and nauseous due to not enough sleep.  I drank relaxing tea, soothed myself with deep breathing and firm-grip regulated my thoughts out of the panic the adrenaline flooding my system kept insisting was a good idea.  Otherwise, due to the enormous fires South of us, the air quality was really bad yesterday, so I decided not to take my afternoon walk.  I knew I still needed my daily exercise, so I had an impromptu dance party while everyone was gone and danced around the house as I cleaned and did other household tasks.  (This takes a lot more energy out of me than my normal walking does, for those of you out there who don’t often dance.)

I also wrote for a while yesterday, worked on my interactive fiction game and made some good progress.  I also spent much of the afternoon working on a handwritten letter.  Both of these activities are brain-intensive and exhausting mentally.  Because my laptop is in the shop, I have to remain sitting up straight for every task I want to do, which means I can’t lie down and relax in bed with my laptop as I usually do.  So my day was also more of a strain on me physically than usual.

In other words, I got more exercise, more activity, and did more with my brain and body yesterday than I generally do.  I also was awake longer throughout the morning.  I didn’t sleep in till noon as I have been lately, trying to catch up on rest I’ve missed while family has been their on their vacation.  My adrenaline system also wasn’t very happy with me for it.

By 10 PM I was exhausted. All I wanted was to go to bed and get some sleep. I couldn’t focus on any of the books I tried to read.   I tried getting Grandpa to bed so that Grandma and I could go to sleep, (she’d had dental surgery that afternoon and was still druggy and tired).  He put up a fuss until 10:30.  I made it into bed a little before 11 PM.

Now, normally I try not to go to bed early, because no matter how exhausted I am physically and mentally, it never means that I can get to sleep earlier.  It just doesn’t.  It has not happened, not once.  But sometimes I try it to see if this will be the time it works out.  You have to have hope sometimes, you know? You have to give you body the space and permission to break its trend.  Normally I go to bed around 12:30 and fall asleep around 2:00.   Yesterday, I went to bed at 11:00, despite being exhausted in all senses of the word, and fell asleep by 2:30.

Now, if all the conditions were ripe for sleep, why couldn’t I sleep?  It was not because I got up too late. It was not because I wasn’t tired or that my thoughts were unruly or I didn’t get enough exercise.

For the first two hours, I was mind-numblingly tired and yet sleep did not come.  But because I wasn’t asleep yet but had been still getting rest, my body decided it had rested enough around Midnight.  My mind started waking up and started thinking somewhat coherently again.  In order to distract my thoughts from going in circles, I turned on an audiobook.

(See? There goes the “too many thoughts” excuse.  Advice: If you have too many thoughts, either write them down so your brain stops trying to clutch at them so you won’t forget what they are, or turn over control of your brain to someone else’s voice and story, or simply tell yourself it’s okay to relax your grip on consciousness and believe yourself when you say so.)

The problem was that since my adrenaline system was still making me jittery and I was wide awake, a voice telling me a story I already knew wasn’t enough distraction.  So I got out my tablet and watched TV episodes of a series I like until I was tired again.   I kept my knees up so that my adrenaline-jitters had something to do, some energy to expend and channel into.  (Lying flat on your back makes adrenaline panic worse not better.)  I think I watched two episodes until I was tired enough to try the whole Sleep idea again.  That was 2 AM.  It still took me a little bit, but I did get to sleep.

Story #2:

This Sunday (and every Sunday) I get up at 8 AM to go to Church by 9.  No matter how little sleep I’ve had the night before.  This Sunday I’d been able to fall asleep by around 2, so I had 6 hours of sleep.  Last Sunday I couldn’t get to sleep till 4 AM, so I had 4 hours of sleep.  (As an aside, because I had 6 hours of sleep instead of 4, people came up to me and told me how great I looked so I must be better.)

If my insomnia was about how much sleep I’ve already had or how late I have slept in, then Sunday nights I should never have insomnia.

I am sad to say  I always do.

But Sunday is just one day! you say.  What if you made getting up early a habit, set your alarm? If my insomnia was about how late I’ve slept in, then forcing myself to wake up early every morning should mean an end to insomnia.

Tried that experiment, and no, that’s not how it works.


Non-fiction writing

You’ve probably noticed I’ve started writing about my chronic illness experiences again lately. This is because I’m gearing up to compile all of last year’s posts on CFS and revise them this summer to make into a free e-book, so the topic’s on my mind as I think about what I have already written and what puzzle-piece gaps are still left to fill.

But I know some of you are asking–why an e-book? And why free?

Well, one, I don’t foresee making enough money to live off of, just enough to mess up my financial situation as it is currently. (Anything more than $20 would be problematic. Crazy, huh?)  Two, I don’t like the idea of charging people money to learn about what it’s like to live with a chronic illness. That seems counter-intuitive.  I want this to be like a pamphlet you hand out on the street, or an information packet you grab at a museum or doctor’s office.

Originally, I’d wanted to get contributors to add to the book, but I don’t think that’s quite right for this project.  Maybe in the future I will make an anthology of sorts and invite paid contributors (since I’ve compiled quite a list of writers who’ve been in similar situations), but not this year and not this book.

So! Expect to see some posts off and on as I think about what else I’d like to add.  If you have any questions, now’s the time to ask them.

– –

As a contrast to the above, I have a new non-fiction book project. I’ve never seen myself as a non-fiction writer, but this book has been in my brain-gears for a couple years.  I just was in denial about wanting/needing to write it until last week when someone I respect told me that I should, without even being asked.  It felt like the stars aligning–again.  This one will be very different from the CFS book, and I won’t be able to put it up in blog-sized chunks because he challenged me to send this one to a publisher and I’m going to take that challenge.  That’s all I will say about it here, but I’m rather excited!  I’ll begin serious work on it this summer after I’ve finished the CFS book, but I’ve already started the preliminaries and have a working table of contents. Can’t wait!


Sympathizing

The best way to sympathize is to listen, to ask questions, and to try to understand.  I’m not always good at this, myself, but I hope that I can at least try to deconstruct what it’s like from the other end, so that we can all learn how to do it better together.

For example, one of the most popular “sympathetic” attempts people make on me is for them to try to show me how they understand my illness because they know what it’s like to be tired.  (This is the unfortunate consequence of having an illness named Chronic Fatigue Syndrome rather than something ominous and obscure-sounding like fibromyalgia, lupus, or even cancer.  Before you speak, ask yourself: would you commiserate this way with someone who has any other disabling illness? Why not?)

This type of commiseration happened to me again twice today (as I write this).  The second time, I just shook my head and told her it’s not like that at all, rather than let her get away with it.  Still, I’m much better at expressing myself through writing.

So without further ado, here is my attempt to answer this phrase via Twitter with a slice of life snapshot,  to try to write up a pithy comparison to what a normal health life is like vs. a chronically ill one.

  • Being tired all the time because you’re overworking yourself is not the same thing as having a chronic illness, just fyi
  • Went to the library on Thursday, found I couldn’t remember the alphabet nor could I see any of the books on the shelves #chronicillness
  • On Friday I opened up a book to start reading, couldn’t even read one sentence before I stopped seeing the page #chronicillness
  • Was exhausted, sick & teary all day Friday, but my body forgot how to flip the switch for sleep, had insomnia till 4 am. #chronicillness
  • Woke up, couldn’t eat without feeling like I was just going to puke it all back up. Am getting good at this nausea thing #chronicillness
  • At least I haven’t had heart problems this week. #chronicillness
  • If I used Twitter to vent about my health whenever I felt poorly, you’d all get tired of me reaaaal soon. #chronicillness

Satisfaction &/vs. Hope

One of the number one difficulties I’ve had over the past two and a half years of my illness is verbalizing to those who are not ill the lesson that I’ve learned about having peace and satisfaction with who I am and where I am.  My listeners’ automatic reaction is to assume that 1) I do not have the faith required to be healed, or 2) I do not have hope in being healed or recovering in my future.  Then they hasten to “teach” me all about how my approach is wrong.

Granted, they may be right in regards to #2, at least sometimes.  There have been times when the enormous friction between my present and my past–or my present and my future–has worn me out to the point where in order to be happy, I’ve had to give it up, to just let myself be who I am and where I am right now, and not worry about “healing” or what all may or may not be involved in the process beyond managing my own present better.

Maybe that’s a lack of hope.  I used to think I lacked hope, until someone once told me that hope is far more pervasive than that. Hope isn’t just about the future, hope can also be about your present.  Hope is the power to see the goodness in your darkness.  It is the power to overcome despair and sadness with humor, cheer, and optimism, (despair is from the French désespoir and means a lack of hope).  Hope is the power of knowing that all things, even the hard things, will work together to make you stronger, more compassionate, more courageous.  Hope is the power of peace in every moment.  It lets you see why you are here, now, in this moment, that it builds you up towards some end goal, and that whatever beast you are facing can be tamed.

There are some people who will suffer with their condition or illness all of their life.  To tell them they lack faith or hope, especially when they do not in fact lack these things is cruel.  To misunderstand them when they talk about the lessons they’ve learned about finding joy in their present, building sandcastles and making their present richer, mores satisfying and more enjoyable–to misunderstand them is inexcusable.  Please stop and listen to them, they may have something to say that you can then apply to your own present, to your own challenges, to make your own present life more fulfilling–wherever you are in it.

And yet, there is one facet of hope that I must not ignore while I take satisfaction in my present.  It is the prescient power of Hope, the power to believe–and to work towards–a change of your present so that your future won’t be more of the same.  It is letting go of fear of The Unknown, and embracing the Better Unknown instead.  It’s being willing to walk into the dark tunnel of change, not knowing what awaits you on the other side, or even how painful it will be to get there.

It is a letting go of control over your life, and giving it up to God or fate or the future or someone else.

This prescient hope, this hope that is a force for change, is only a part of what heals.  Healing begins first in your present, creating greater peace, calm, and happiness.  Then it extends backwards and forwards–looking more favorably into your past, and weaving itself into a brighter future.  At least, that is becoming my experience.

There is a famous and wise saying: learn from the past, live in the present, and plan for the future.  Whenever I talk about making my present a better place to live, I hope you will not mistake me.  I am not ignoring the past, and I am not shutting out the future.  I am only discussing all the weeding and planting I’ve been doing in my present.  There has been a lot of work to do, and I have learned a lot from the endeavor.

– –

For those who don’t like large blocks of text, read the Twitter-condensed version:

The delicate balance of the chronically ill: learning how to both accept & appreciate where you are, yet still have hope in something better.

Those who are healthy will want you to be healthy, impatient and unsatisfied with your present.

Those who are ill will find it hard to imagine anything could be different or better.

Accepting your present for what it is, for its joys and sorrows, does not mean you do not–or should not–have hope for a better future.  There can be peace in any present, as well as joy in any journey.


Title the Book

With my previous posts on Chronic Fatigue Syndrome, I wasn’t really looking for feedback.  This time I am, because it occurred to me about a week ago (as I write this on August 10th) that not only should I collect all my posts in one place on my blog, but I should publish and distribute these as a free e-book.  I’m going to have to stagger out editing and cover art costs, but I thought this is where I could really use your help in the meantime.

I’ve been brainstorming book title ideas, based on the posts’ themes.  Help me decide?  And if you have any other suggestions, or you’d like to comment in general, please do so.  I’m also interested to know if there’s any other topics you want me to address that I’ve missed. Any particular questions about what it’s like to live with my chronic illness, and so on.

I should note: If I’m able to get other contributors–which I really hope I can–I’ll probably change any reference to Chronic Fatigue Syndrome in the title to simply “Chronic Illness.”  The exception would be the Sleeping Beauty title, which I could modify to “Not Quite Sleeping Beauty: Living with Chronic Fatigue Syndrome, and other tales.”  Yeah, it’d be long, but doable.  The subtitle wouldn’t have to be on the cover, itself, but the inside title page, for example.  And then of course, there are other possible adaptations for multiple contributors for the title options above.


Starlight

There have been a lot of negative-sounding posts in this blog series, I’m guessing you’ve noticed. (Yeah, that was an attempt at wry humor there. I just don’t know how to express it without emoticons, apparently.)

It’s true that this series is intended to paint as accurate a picture as possible. I’m not going to lie or sugar-coat it: this illness is hard. Really hard.  And if I didn’t show you how hard, then you wouldn’t begin to understand it.  Of course, there are times when I can be blasé or cheerful, I can smile and shrug it off, because no matter how long or how hard something is, our ability to cope with the same things can shift up and down.

I should note that I have a hard time explaining or talking (verbally) about it, and so whatever I have to say now is pretty much memorized, and any script, once known by rote, can be delivered in any tone of voice, with any actions or gestures, with any sort of light in the eyes.  So my verbal explanations can be deceiving.  That’s part of why I wanted to write it all out for you, where I could come at this illness from as many angles as possible and explore it piece by piece.

However, despite the darkness previously painted for you–in every night sky, there are stars, whether we can see them or not.

It is up to me to search them out.

Today I wanted to name a few of those stars, give them form, shape, and position. I want to name a few of the good things that have come of so much darkness.

  • I am getting stronger.  For months I could not feel it, could not see it. I thought I was weak and beyond weak because I could not manage to be who I wanted to be, to behave how I wished to behave, but now I understand.  When you go to the gym to lift weights, you don’t lift the easy, small weights every time you go.  Instead, you gradually lift heavier and heavier weights.  Each time you lift weights, you feel weak and your arms tremble because the weights are getting heavier and you’re not accustomed to lifting so much for so long, but irregardless of how you feel, your muscles are getting larger, too. Despite how weak you feel, your capacity to lift heavier weights is growing. It’s also good practice to lift weights to strengthen your whole body, concentrating on different areas rather than just one. –Feeling weak does not denote weakness, it just means that your limits are being tested, and that your muscles are going to get bigger, stronger, more dense.
  • I am more patient – with myself, with others, with the past, present, and future.
  • Harsh, impatient expectations (like perfectionism, rigid time-tables) are fading.
  • I see things now that many others don’t see.  Sometimes it’s because I’m standing now in a different place than I was two years ago, I’ve climbed the hill and I can see more of the city, more of the unobstructed night sky.   Other times it’s because I’m so open about my experiences that people feel comfortable opening up to me about things they’ve suffered or are struggling with, when they never would have previously.
  • My capacity for understanding, empathy, and compassion has deepened through experience.
  • I have had spiritual experiences that are as precious pearls to me, that I never would have dreamed possible five years ago, in the place that I was. These shine brightly, and I clutch tightly to them “when all other lights go out.”
  • My fears are fading, replaced by faith and trust and peace, that no matter what happens, everything will be all right–everything IS all right– because time and time again, I’ve seen good things happen, no matter how bad it gets.
  • I’m learning how to be interdependent rather than independent.  How to be open, honest, vulnerable, and strong.  How to rely on others.
  • I’m learning how to take care of myself better, and that there are things I can’t do or be for others, and that’s okay.
  • Being sick is not a vacation, but it has given me time and space to read and write, look at my priorities and decide what’s most important to me.
  • I’ve also had the time to really delve in and get to know all the ins and outs of the publishing industry, which is useful.

Some of these stars shine more brightly than others. I am mortal, after all.  Some of these lessons aren’t very strong yet, I’m not very consistent at remembering or calling on them in the moment, but that’s okay, too.

I wouldn’t wish these harsh life experiences on anyone, but you might be surprised to learn that I wouldn’t wish them away, either.  I like who I am, who I have become, and what these have made me. I like what I now see, the power I now have to see, to care, to shape the world for the better–one person at a time.  I am in awe of the things I’m learning, and I hope to keep moving, keep learning, keep growing as life goes on.  May I never become stagnant. May I never stop poking at the universe’s warp and weft, to see the strands and learn why and how and what next?.


Variety + Priorities = Life

Life is glorious. If you’ve forgotten this, then maybe what you’re lacking is a little variety.  Change up your routines. Do something new, something you’ve always wanted to do–or something you’d never even considered doing before.

Variety is the spice of life.  Despite the inability to do much in any given day, there are a whole lot of things I could do. (Note how the “should be doing” is absent. Self-imposed deadlines are just that–self-imposed.)

I can read, write, blog, listen to music, watch a TV show or movie, explore the Internet, embroider, draw, paint, play a game, work on my website, alpha-read, organize something, go for a walk, dry flowers, help a cause, read blogs, spend time budgeting, write an e-mail or letter, talk to friends or family, plan a trip, dance to a song, research something, learn a new skill, take a nap, admire the paintings on my wall (you laugh, but it happens a lot), visit a museum, take a walk through the city’s gardens, go through a box full of memories, start a new project–

And have you seen my list of projects? If you haven’t seen my Storybox, know that this isn’t even the full list of things I work on off and on.

There’s so much to do and discover, even if I have little energy to give.

In fact, I have a list of 12 things that I can see from my bed for when I’m too braindead to do much or too much in a fog to think of something to do. I just look at the list, and pick whatever sounds the most appetizing.

Boredom, my friend, is far worse than pain.   There’s a huge difference between my ability to cope with my illness when I can’t think of anything to do and when I have something to enjoy.  So I keep that list handy of things that don’t take a lot out of me, and then I match the items on the list to however I feel.

For example, I spent most of today and my downtime yesterday (as I type this) watching the French musical Roméo et Juliette as recorded in 2001. It’s up in its entirety on youtube.  (Oh blessed be.)  It was both educational (exercising my French comprehension muscles) and fun and relaxing (the music is quite good and the lyrics are gorgeous).  What’s more, in all those hours of my brain simply not working well, I wasn’t bored.  The time passed quickly, and I am happier for the experience. Because I’m happier, then the people around me can be happy, too.  All-in-all, this little piece of variety to spice up my past few days has been good.

But for all the variety, if I don’t prioritize, nothing will ever get done.  Priorities, then, are what make accomplishments.  So out of all the million things I could be doing, I pick a handful to concentrate on.  That handful can change even from week to week or month to month.  For example, I was working almost exclusively on my novel The Witch’s Tower up until I realized that writing accurately about my illness was more important to do right now.  So I created Queen of the Eight Banners, my fiction project to that end.  Yes, I have been working on it for the past year, but I’m not as discouraged by this slowness as I was at the beginning.  Creating something new entirely wholesale, from scratch, is hard for me right now, and I’ve realized that’s perfectly fine, I’ll just keep going anyway.  But then I realized that I should write these nonfiction blog posts in the meantime. So, as I puzzle over a hang-up in Queen‘s part 4, I’m writing you these posts.

I have other priorities, of course, but they don’t relate directly to this particular topic, so I won’t go into them.  Instead, I will simply say –

Dream. Take chances. Try something new.  Have kind expectations. Prioritize.  Everything else will fall into place.


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