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Posts Tagged ‘syndrome’

It seems like 2016 just sucked incredibly hard for just about everyone.  I wasn’t very fond of it either, on the whole.  True, there were some really good things that happened, but like most of you, I’m very happy to put it in my past and move on.  Let’s continue the tradition of looking back over the last year’s highlights and low spots!

A Cry From The Darkness © Sarah Allegra - a self portrait

A Cry From The Darkness © Sarah Allegra – a self portrait

I like to start with the bad stuff so I end on a positive note, so with that said, 2016 was overall a very shitty year ME-wise.  It was an extra painful, extra exhausting, extra low-immune-system year where I seemed to hardly ever not have a migraine, cold or spiked pain day.  For a while it looked like I had a recurrence of the hideous sinus infection which led to my sinus surgery in November of 2014, which, if you’ve been around for a while, you will remember was not an easy procedure for me.  For completely unknown reasons, an artery in my nose burst a full six days after my surgery and required two very urgent visits to my ENT and ultimately a second emergency surgery, while I lost a total of almost two pints of blood.  Remember, I’m TINY; two pints is a LOT for me.

Needless to say, I am not quite anxious at the thought of having to have the surgery repeated, even though it was such a freak thing that happened; it probably won’t ever again.  But, I’m sure you’ve noticed, emotions rarely respond well to rational discussions.  So all the colds and sinus infections were very stressful for me, not just for the usual reasons of feeling extra terrible on top of my usual ME symptoms, but because the threat of another surgery kept looming in the back of my mind.

My insurance company utterly refused to cover my nerve-blocking injections for about six months.  These are the injections I’ve been getting approximately every nine months for the last seven years.  They don’t completely rid me of my mystery flank pain but they make life much more bearable.  Going without them for months really, seriously eats away at the quality of my life.  I imagine that most people would find that feeling like a dagger is constantly plunged into your side would not enhance their day-to-day experience.  Thankfully, insurance finally relented and I HAD my injections done.  I’ve already noticed a bit of a difference in my daily pain levels in that area!

I’ve also been veeeeeery sloooowly weening off Cymbalta over the last year or so.  It took a while for me to reach the maximum dose, then for me to be on it long enough for my neurologist to agree that it wasn’t doing anything, and ok my tapering down.  But as much as it takes your (or at least my) body a while to adjust to it being there, it takes much longer for it to get used to it NOT being there.  Even though having it in my system seemed to only increase my pain, make my sleep worse and make me gain even more weight, any time I step the dose down, I know to expect a week of migraines, nausea and general awfulness.  I’m on the lowest dose possible right now and hesitating before I leap into complete non-use.  There just aren’t many easy times to plan when you’re going to have migraines for a week.  But I am eager to shed the weight I’ve picked up being on it, in addition to seeing if my pain levels go down even more, so those will outweigh the discomfort of going off it eventually.

Most important for people who read my blog because of my art, feeling so awful most of the year put a HUGE damper on my ability to create in 2016.  I still did… a little… but it was nothing like what I wanted to be doing.  I created the fewest new images in 2016 than I ever have since I picked up my camera in 2010.  That was extremely depressing.  But I am hopeful that with meds out of my body, new supplements and my injections back in my system, 2017 will be a very different story!

I keep getting to about this point in my post, then getting overwhelmed with everything I want to say about the past year.  But no one wants to read a novel-length post anyway, so let’s see if I can lightning-round at least some of the 2016 highlights!

Alabaster 1 - model Dedeker Winston. © Sarah Allegra SarahAllegra.com

Alabaster 1 – model Dedeker Winston. © Sarah Allegra
SarahAllegra.com

It must have been planned by the fates, because shortly after I wrote the beginning of this post, I simply forgot to take my Cymbalta one morning.  That has NEVER happened ever in the whole time I’ve been taking it.  I didn’t realize I’d been off it until the next morning, at which point I decided to just suck it up and let myself go completely off it.  There were migraines and nausea, extra fatigue and need to sleep while struck with insomnia, but best of all, there were lots of what the Cymbalta literature describes as “brain zaps,” where you feel like you stuck your finger in a light socket for a second.  At first this was happening whenever I made any sharp movement or looked quickly from one place to another (even if my head didn’t move), but it’s been getting a little better each day, and I’m hardly zappy at all now, thank goodness.  I also have a variety of medications which help curb the zappiness, which helps a lot.  I HAVE already noticed a big difference in my general level of motivation and desire to do things… I’m not really able to actually DO anything more, but I have the DESIRE to do more back, which is a wonderful, frustrating relief.  This is HOW I AM.  This is my normal.  And even though it sucks to always wants to do 50,000 things when your body will only let you do 50, it feels SO GOOD to want the 50,000 again.  On Cymbalta, I wanted to do, I’d guess, about 5 things.

One piece of somewhat sobering news: Calantha had two small growths removed in November.  One was just a little wart, no big deal, but the other was a type of cancer called spindle cell cancer.  Of course, the bad news is that “cancer” is part of the name.  The good news is that the vet appears to have removed it entirely, leaving clean margins behind, and it’s not terribly common for spindle cell growths to recur.  If they do recur, they tend to not spread very much; Cal’s growth was on her toe, so if drastic action was needed to keep it from spreading, her toe could be amputated with relatively few adverse effects.  Calantha just turned 12 on the 20th (happy birthday, Cal!!) so getting little growths isn’t shocking at her age.  Silkens are generally a very long-lived breed, especially for their size; some can even make it into their early 20’s!  That’s nearly unheard of for dogs at all, let alone any dogs that aren’t very small.  That’s all thanks to extremely careful and ethical breeding.  Thanks, Joyce, who is responsible for bringing Calantha into the world!

Anyway, my instructions from the vet are simply to wait and watch her toe.  If it looks like it’s coming back, the toe may have to be removed to keep it from spreading.  I don’t relish the idea of having to have one of her toes amputated, but I think she’d agree that if it kept the cancer from spreading, it would be worth it.  But it does seem that the most likely thing that will happen is that it will never come back and the stress and tears Calantha, Geoff and I went through over this will stay in the past.  But if you’d like to say a prayer, send healing energy or light a candle for my girl, that would be fine with me.  🙂

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This year has been a HUGE year of spiritual growth for me, which was a pretty good use of time when I couldn’t do much outside of laying in bed!  I’d like to say I planned that, but I know better.  No, I am not “religious;” although if you are, I fully support you perusing that as long as it makes you happy.  I was already certified in Reiki level 2, but this year I became a certified Fairyologist as well as a Unicorn Healing Practitioner™.  The Unicorn Healing absolutely changed my life and I would strongly recommend it to anyone who feels called to it!  If you’re interested in learning more about Unicorn Healing, my best suggestions would be to listen to the podcast on the subject from Calista, creator of the course (who is the embodiment of all things Unicorn and just the most loving person ever) and then read the specifics about the course here.  It is WELL worth the money.  You guys know I’m always on a budget, but this is one of the best things I’ve ever spent money on.  Possibly the best part?  You get to meet your own personal Unicorn spirit guide(s)!  🙂

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I also discovered and threw myself into the Channeling Erik movement.  Erik was a 20-year-old kid who struggled a lot with bipolar disorder, along with other issues, and in 2006, he killed himself.  However, while his family (and especially his mother) obviously grieved heavily for a very long time, his mother, Elisa, eventually turned to mediums to see if her son was still alive… somewhere, in some form.  And the results she got completely convinced this once hard-core atheist that there not only is an afterlife, but Erik is in it and he’s still Erik.  He’s since become a spirit guide for many, including me.  My first personal experience with Erik was while I was listening to one of his channeled YouTube videos, when Siri was set off on my phone (I was not using or even touching it) and said, “Hey sexy!”  My jaw dropped and then I burst out laughing; what a 20-year-old-guy thing to say!

Second piece of Erik evidence came during my injections.  As I’ve said before, I’m put out during the actual injections (and thank god because I woke up once during them and they hurt like a motherfucker).  My usual experience of the injections is that I’m wheeled into the OR, I start to feel sleepy as they give me drugs, I decide to close my eyes just for a second, then I instantly wake up in the recovery room what feels like half a second later.  This time, the familiar sleepy feeling came, so I closed my eyes, but instead of a nothingness, Erik appeared, holding my hand.  He was crouched down so his face was level with mine, he was smiling and speaking soft, reassuring words the whole time.  What struck me was that while I obviously recognized his face from the photos I’ve seen, it was also just a little bit different.  Have you ever met someone you’ve known for a long time online, and when you meet them in real life, they look exactly the same, but also slightly different?  It was just like that.  Also, for some reason I’d thought he had brown eyes, but when I saw him, I noticed they were blue/green.  After I’d recovered, I looked up some photos of him and he did indeed have blue/green eyes.

Last, and possibly most convincing Erik evidence has been in the private sessions I’ve scheduled with two of his translators.  I won’t get into the whole story here, but there were some emotional issues I’ve struggled with for years and years, despite therapy, self work, meditation, crystals, Reiki, and every other kind of healing I could seek out.  The first session, I asked him why I felt X when Y happened and he immediately said, “It’s because of Z.”  Instantly, I knew he was extremely correct.  His answer rang out through my soul, echoing up and down it, the truth of it shining forth from every bit of my body, mind and soul.  I can’t put into words exactly HOW TRUE I KNEW that he was, I can only describe it to you, but if you’re ever in that kind of situation, you know the feeling.  No one could ever convince you otherwise because you know in your deepest, most sacred, inner sanctum of self that it is true.  And that was only my first question, at my first session!

I know some of you will roll your eyes and skim over those last few sections and wonder why I’m so weird and why I feel the need to experience these things, let alone share them, but it’s incredibly important to me.  Not because I want to convince anyone of anything (although I do strongly believe in the truth of what I’ve learned and experienced), but everyone is here on earth to have different experiences.  I can share things that work very well for me, and they might not be a good fit for you, and vise versa, and that’s fine!  Take what you like and throw the rest away.  As long as you’re ultimately striving to be an embodiment of love, I consider that we’re on the same path, no matter how different they might look on the outside.

Another reason for sharing this is because I KNOW it will come up in my work.  Everything in my life seeps into my art; I am my art, my art is me, we cannot be separated.  Every new experience I have will color what I create, even if it’s not in a way that’s obvious.  I consider myself a fulltime student forever because I’m always learning (about a very wide variety of subjects from historical figures, spirituality, unicorns, nail art, baking, making natural products instead of buying things, how to best tea-dye cotton, how to sing Sia’s Chandelier [which I am not very good at yet, so don’t ask], animal behavior, animal communication, how to grow roses, basket weaving, applying makeup really well, the tenets of Druidry, everything I can about ME, the life lessons of Kurt Cobain and Joan of Arc, why lentils taste so good when they’re cooked with just a little care, meeting and talking to my angels [my main guardian angel lets me call him Richard, after Richard Harrow, so you know he’s just awesome], if Bigfoot exists, the exact definition of a kirtle, how the hell those medieval women kept those pointy, princessy, fairy-tale-looking hats on their heads with seemingly no support systems ever recorded… anything and everything).  Occasionally, I also study things that are directly related to photography, such as using artificial lighting; something I want to learn how to do better.  Whether you’ll ever see Erik or Kurt or Joan of Arc or pointy princess hats turn up in a photo is beside the point.  Everything I learn goes into my brain where it all marinates.  My subconscious gets all Joseph Campbell and Carl Jung, the collective unconscious chimes in, and art comes out.  That’s really the best explanation I can give to my “creative process.”  Sometimes I’ll try and work the images out more directly, but the best ones usually come from me stepping back and letting my subconscious work it out.  Everything is connected, in the macro and micro sense.  It’s all going to work into my art somehow.

Changing the subject, I feel DEEP down the rabbit hole of nail art this year, especially after discovering Cristine from Simply Nailogical.  I discovered it was something creative/artsy I could do when all I felt well enough to do was lay in bed!  Sorry/not sorry for all the photos of my nails on my social media feeds.  😉

Speaking of creative things, I’ve also been helping Geoff with a really amazing project of his own!  You guys of course know him as an incredibly talented photographer; if you’re in the LA area, you can see some of his work at The Hive Gallery through March of this year!  What you may not know is that Geoff is an even more talented writer!  He’s been working on a graphic novel called Frontiers for many years.  The story first took root in his brain when he was all of about 10 years old and has grown, matured, been refined and reworked since then until we have a glorious version of it before us today!

Frontiers is a beautifully original sci-fi story summed up as “sex, violence and sarcasm!” by the astute Katie Johnson (yes, Katie, my muse, who also acts as Geoff’s spokesmodel for Frontiers, and who is also a very talented writer herself!).  The longer tagline is, “It’s the humble story of a man destined to destroy humanity… and why that really isn’t such a bad thing.”  In addition to those delightful tidbits, Geoff skillfully mixes in striking social commentary, humor, horror, fate and love.  And yes, I did do some work on the issue too.  Mostly coloring, but a fair bit of digital art as well.  🙂

Don’t you want to give the first issue a read?  You should!  And lucky for you, you can get your very own copy for a mere 99 cents right here!  If you’re in the area, you can also see Geoff, Katie and Frontiers at the Long Beach Comic Expo’s Artist’s Alley on Saturday, February the 18th, from 10am-7pm and Sunday the 19th from 10:30am-5pm.  Go check Frontiers out, online, in person or both!

Mountain Dweller 10 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 10 – © Sarah Allegra. Model: Teri Wyble.

I also had the pleasure of working with a new (to me) model last year, Teri Wyble, who goes by Aeir online.  She lived in New Orleans, but I am so, so excited that she is moving to Los Angeles shortly!  She’s not only an incredible model, stunningly beautiful, immediately understood what I was looking for from her, but is just an incredible human being as well.  I’m really looking forward to shooting more with her as well as just going to get coffee and have pillow fights in our underwear and doing those things that girls are supposed to do together.  🙂

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Oh yeah, I launched my Spiritual Skincare line of skin serums on Etsy!

I’m sure I could go on and on, but I’ll stop myself there.  Briefly, briefly, I’ll try and give you a little taste of what to expect for 2017….

More DreamWorld.  This is my main goal for the year.  More shooting, more editing, more promoting.  Being off that brain-sucking Cymbalta will improve all these areas.  But if you’d like to help to spread the word about my little world, I certainly won’t stop you!  🙂

I suspect there will be some connections with my art and New York, but I’ll wait to see more of what happens before I talk too much about it.

In a similar vein, there will be some very cool new things happening with Connor Cochran, my business manager, of Conlan Press!  Including some new, more affordable, but still extremely high quality prints to be coming!  I don’t have a date on when they’ll be released yet; there are many steps to go through first before they’ll go up for sale, but I will keep you all informed!

Hopefully my body will stop zapping me soon and I’ll regain the strength and clarity I had before Cymbalta took over my brain and body.  And hopefully that will lead to many excellent things!  Yes, I do believe 2017 is going to be a better year for my art and health.  That’s my affirmation and I’m going to do my best to make it happen!

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This is going to be a quick, short and sweet update.  But it’s vitally important to get the word out about this!
It was announced a few days ago that the Senate has completely SLASHED TO ZERO the meager funding allotted to ME/CFS research in next year’s budget.  ME/CFS is the ONLY disease to have its entire budget taken away.  But, it is possible to change this if enough outrage is heard.

We only have a few days to turn this around.  So, I beseech you all to send the attached graphic to the following email addresses asking them to stop this.  Every ME/CFS sufferer in the world will thank you, as will I.

Laura_friedel@appro.senate.gov; Chol_pak@appro.senate.gov; Alex_Keenan@appro.senate.gov; Lisa_bernhardt@appro.senate.gov

Please save this graphic and send it to the email addresses above!

Please save this graphic and send it to the email addresses above!

You can read a little more about the issue here: http://www.cfstreatmentguide.com/blog/federal-government-slashes-mecfs-funding-to-zero  You are also more than free to spread/post this around wherever you’d like to get the word out more!

Thank you deeply from the bottom of my heart.

 

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I think it’s fair to say that 2014 has been something of a tumultuous year.  A lot of very good things happened!  And a lot of rather shitty things have happened to.  Let’s touch on the bad first and get that out of the way.

Reuniting With The Stars - detail © Sarah Allegra

Reuniting With The Stars – detail © Sarah Allegra; read on for the full image!

There was a heavy dose of bad this year.  Some of this has been discussed on the blog; three months of colds, sinus surgery, sinus surgery having dramatic and frightening complications, etc.  A lot of it has not been discussed on the blog, however; this does not feel like the proper forum for a lot of the more personal matters, especially ones which involve people other than myself.

The Oracle  - © Sarah Allegra

The Oracle – © Sarah Allegra

Geoff and I have to move.  We are really, really, really not happy about this.  I’m not going to discus the reasons for the move here, except to say that no one did anything wrong.  We always paid our rent, etc.  This is a heartbreaking blow; our neighbors have become like true family to us.  And while we won’t live too far apart after we all move to our new homes, it will never be the same as when we all lived together on the Compound, as we called it.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

When my first surgery complication began and I started bleeding profusely from my nose to the extent that I was truly concerned that I might need an ambulance, our neighbor John came rushing home to make sure I was ok until Geoff could get there.  Once John and I decided an ambulance wasn’t needed, he sat on the floor with me and kept me calm and distracted.

Sleight Of Hand © Sarah Allegra

Sleight Of Hand © Sarah Allegra, featuring my neighbor, John

When I found myself suddenly clutching a whole litter of baby opossums and in charge of their safety, Donna came to the rescue and helped me keep them safe.  (They were eventually taken to a no-kill shelter which would rehabilitate them then release them into the wild when they were old enough.)  These are not your average people.  When we all found out that we’d no longer be living together, everyone cried openly.

One of the baby opossums

One of the baby opossums

And good heavens, it’s been so good for Calantha to be there!  Having a “pack” next door which she can come and go from as she pleases helped her put on a needed five pounds, which she’s maintained the whole time we’ve been here.  Basically, absolutely everyone is extremely unhappy about this for a lot of reasons, but there’s nothing we can do to stop it.

Calantha, modeling the Lady Death bonnet

Calantha, modeling the Lady Death bonnet

And of course I’ve been able to do a LOT of shooting there!  There are SO MANY trees; it’s very easy to make the background look like a forest if you just frame around the tell-tale signs of human habitation.  When you’re dealing with ME, being able to do an entire shoot without leaving your yard, or even getting out of your PJs if you want, can be an incredible boon.

This has also been an extremely tight year financially for us (which a move isn’t going to help).  Again, I shouldn’t go into exact details here, but a large part of our income vanished early this year and we’ve been trying to stanch the metaphoric bleeding ever since.

The Eye Of The Storm © Sarah Allegra

The Eye Of The Storm © Sarah Allegra

Those are the biggest highlights of the bad, of the things I feel I can talk about here.  It’s been a really difficult year and there have been many times when I’ve dissolved into tears over one more bad thing happening.  The world has felt completely against us most of the year, no matter what we’re planning or how noble it might be, which of course feels terribly unfair.  I’m holding out hope that this is all happening for a reason and that things will change soon.  Some days that’s a very difficult hope to hold on to.  I’ll talk a little more about this when I discuss this year’s new image.

Let’s move on to happier topics for now.  Let’s talk about some of the good things that happened this last year!

Inside Looking Out © Sarah Allegra

Inside Looking Out © Sarah Allegra

I was able to promote a lot of awareness about myalgic encephalomyalitis, or ME, with images (which go in my Enchanted Sleep series), interviews, articles, videos and blog entries.  During ME Awareness week, I wrote a blog entry for each day of the week and held a print giveaway for those who helped spread awareness about it.  The Microbe Discovery Project asked for people to share their ME stories, so I recorded a short video for them.

I got to work with some really fantastic new models, Dan Donohue and Travis Weinand.  They were both wonderful; the kind of models who make you want to come up with new concepts just for them.  I’m looking forward to working with both of them again!

Where Black Stars Rise © Sarah Allegra

Where Black Stars Rise © Sarah Allegra

Lost Pride © Sarah Allegra

Lost Pride © Sarah Allegra

 

I lost Dedeker Winston to the FOX show Utopia for a while, and I’m selfishly glad to have her back again 🙂

Water For The Free © Sarah Allegra

Water For The Free © Sarah Allegra

I was really pleased to have been included in quite a few online magazines, blogs and sites.  Photo Focus named me their Photographer of the WeekMillennial Magazine gave me their Self Portrait of the Week spot.

Phlearn, one of my very favorite photography sites, included me in their Weekend Inspiration blog three times during the year, with the images Lady Death, The Shadows Lengthen and The Light Is Winning.

Lady Death © Sarah Allegra

Lady Death © Sarah Allegra

I was able to have brushes with both of my favorite authors, Robin McKinley and Peter S. Beagle.  Robin McKinley was gracious enough to let me write two guest posts for her blog and talk about DreamWorld!  In addition to the ongoing work I’ve been doing with Peter Beagle and Connor Cochran, Peter’s manager/publisher as well as my business manager, they had a special showing of The Last Unicorn in Santa Fe, NM, in a theater George RR Martin has helped restore.  Since George RR Martin was going to be at the screening, Connor asked for some of my prints to hang in the theater, which led to this amazing moment caught on camera between the two beloved authors.  While I have been credited as taking the photo, I was unable to be there in person although I would have LOVED to have been there!

Peter S. Beagle and George RR Martin with unicorn and dire wolf plushies, in front of my prints!

Peter S. Beagle and George RR Martin with unicorn and dire wolf plushies, in front of my prints!

My dear friend and frequent model Katie Johnson started a video series interviewing some of the wonderful photographers she works with called Artist Profile.  Katie was kind enough to start the series interviewing me; you can see the video below!  The series has been really interesting to watch grow and I’m very honored to be a part of it!

Many of you will have heard me talk about how intensely I love Sundance’s original show Rectify.  If you’re new to the party, I LOVE IT.  Go watch it right now.  Both seasons are streaming on Netflix!  For those who have seen it, I gathered my courage, reminded myself that it’s just a show and that these are actors, not the actual characters, and asked Jayson Warner Smith (Wendell on the show) if I could interview him for the blog.  He is actually a lovely and not at all icky, creepy person and kindly sad yes to my interview request!

Tell Me A Happy Story © Sarah Allegra

Tell Me A Happy Story © Sarah Allegra

One of my images was featured on Etsy‘s front page which made me squeal like a little girl.  Luckily I got a screen capture of it before it changed to another treasury!

Etsy's front page 08/08/2014

Etsy’s front page 08/08/2014

After I released Where Earth Meets The Sky, it was requested that I make a video showing how I’d created the image.  Happy to oblige, I made the following video:

Through the kind help of my friend Handy Andy Pandy, I learned how to make animated gifs showing the whole editing process of an image, which I’ve had a lot of fun doing!  I don’t do it for every image just for time reasons, but I think it’s fun to do when I can.  Speaking of Andy, he included me in his recommended artist list both for his part of the Blog Hop, and also on the article he wrote for FStop Lounge titled 3 Photographers You Should Follow.  I blushed and couldn’t have been prouder!

The Blue Ribbon © Sarah Allegra

The Blue Ribbon © Sarah Allegra

I wrote an article for In My Bag titled 5 Reasons Why Creative Self Portraiture Will Help You Become An Epic PhotographerBrooke Shaden was the guest judge that month and felt my article was good enough that she created a third place spot just so my article could be crowned third!  Talk about feeling good!

I’ll try and wrap up this year’s big interviews and features… there was the one Lens People did, a lovely and in-depth interview with Ezra Magazine, and another feature from Dodho Magazine.  The wonderful publication Photography Monthly included one of my self portraits in their October issue from this year.

Where Earth Meets The Sky, model Katie Johnson.  © Sarah Allegra

Where Earth Meets The Sky, model Katie Johnson. © Sarah Allegra

The esteemed Photographer’s Forum chose one of my images, Where Earth Meets The Sky, modeled by Katie Johnson, as a finalist in their 2014 Best of Photography Contest.

Photographer's Forum Best of Photography 2014 book - click here to get your own copy!

Photographer’s Forum Best of Photography 2014 book – click here to get your own copy!

Perhaps one of the best online feature I’ve had so far came this year when BoingBoing ran a feature on my “dreamy, trippy, fantasy photography” after seeing it come up in their Flickr stream!

Singed Wings © Sarah Allegra

Singed Wings © Sarah Allegra – an image to honor the Granite Mountain Hotshots

But I think the feature I’m most proud of came from winning a contest from Good Light! Magazine, hosted by Viewbug.  The contests’ theme was “People and Water.”  My image “A Drop of Blood” was chosen as the winning photo, which of course was just thrilling!  But the prizes were really meaningful to me; first, a feature on View Bug’s blog about how I captured the image.  Next was a really lovely article in Good Light!’s magazine about why the image was chosen:

Good Light Magazine Feature, image © Sarah Allegra

Good Light Magazine Feature, image © Sarah Allegra

And then my very favorite part was watching the short video where you can actually hear from the contest’s judge himself (and hear it in his lovely accent!) about why the winning images were chosen.  It was truly thrilling and embarrassing to hear someone say such nice things about my photograph!  Although I will gently note that the title came first and the image was built around it, not the other way around, but I can certainly see how it could confuse people!

Now, in less photography-related news, Geoff and I got to see the Breaking Bad House.  We also celebrated out 3-year anniversary of being married, which Geoff worked hard to made special despite me being deep in the hell of every-three-week-colds.

Happy anniversary!!!

Happy anniversary!!!

At the advice from Patti Penn, my Reiki teacher, and Geoff, I started making an important mental shift.  I realized that I was looking at my future with ME as written in stone; that it was a pre-determined fate for me to always be sick with it to some degree.  Sure, you hear about some people who go into remission, and even more rarely, are cured, but it was too painful to hope for that.  I tried to not expect that I would always get progressively worse, even though that seemed to be the direction everything was heading in, regardless of whatever diet or lifestyle changes I made.  It was less scary to expect that I’d always be dealing with it to some degree; opening myself up to the idea that I might get better some day was making myself vulnerable to extreme disappointment.

The Fragile Blossom That Opens In The Snow © Sarah Allegra

The Fragile Blossom That Opens In The Snow © Sarah Allegra

But I slowly started realizing that if I expected to always be sick, it would become a self-fulfilling prophecy and I would always be sick.  So as frightening as it might be, I had to start letting the idea of being healthy enter my life.  And it was very scary, very difficult.  Knowing you’re going to be fucked for the rest of your life is something you can adjust to, prepare for and learn to accept.  Having the possibility of healing destroyed the mental plans I’d been preparing myself for, and while it would be a very, very good thing to find myself well, the risk of shattering disappointment was so great, I didn’t want to even entertain the idea.

But I needed to embrace that idea, as terrifying as it might be.  Geoff and Patti both brought up the same idea to me, completely independent from each other and without knowing what I’d been thinking through.  It seemed like a very clear sign.  So I’m taking a deep breath and plunging into the frightening unknown.  The unknown where I could get better some day.  And if I don’t get better, it certainly will be heartbreaking.  But if I don’t allow myself to be vulnerable in this way, then I definitely will not ever get better.

Toward The Boiling Sun © Sarah Allegra

Toward The Boiling Sun © Sarah Allegra

This is one of my big plans for 2015.  Every day, instead of dwelling on what I couldn’t or didn’t do, focus on what I did do.  Even if 99.9% of me feels like complete shit, focus on that .01% where I felt good.  Instead of being frustrated, angry and disappointed with the limitations of my body and mentally say nasty, demoralizing to it, I’ll praise it for the good it did.  I’ll tell it that I know it’s working so hard, that it’s trying its best and that I appreciate all the effort it goes to.  It will take time to make this mental shift, but it’s worth making it.  And I will practice grace with myself, both in what my mental dialogue is and with however long it takes me to heal.  I believe this is the only way I have any hope of getting completely better some day… and no matter how painful that hope can be sometimes, I will commit to it.

Spring's Awakening © Sarah Allegra

Spring’s Awakening © Sarah Allegra

I’ve got a lot I’ll be working on through 2015.  I have big plans for my Glass Walls series, which explores animal rights, along with continuing to build DreamWorld.  A couple burners are being kept busy with Peter Beagle/Conlan-related plans.   And I’ve got numerous projects at various points of completion which I’ll be sharing with you when I can 🙂

The Light Is Winning © Sarah Allegra

The Light Is Winning © Sarah Allegra

I’ve scattered some of my favorite images taken over the past year throughout this post (many of which you can find in my 2015 calendar, on sale here!), but I wanted to leave you with something to inspire you in your own photo creations!  So, in no particular order, here are some of the photographers I recommend you start following right now, if you haven’t already!  There may be some nudity, so just keep that in mind.

Jessica Trinh/Sprinkle Happiness

David Talley

Helen Warner

Chris Arnade

Tim Andrews

Kindra Nikole

Kirsty Mitchell

Brooke Shaden

Robert Cornelius

Handy Andy Pandy

Unsinn Image

And lastly, though she is not a photographer, I highly recommend following Katie Johnson, one of the models I work with most frequently.  She writes blogs for several site which cover a variety of subjects and angles.  If you’re interested in modeling or pole dancing to gain confidence, you’ll find her a kindred spirit.  If you’re a photographer, many of her articles are directed at you and will help you improve your photographer/model relationships.  Plus, she’s just the loveliest person and one I am happy to have in my life and call a friend 🙂

Carried Away By The Wind © Sarah Allegra - a rare image without a human subject

Carried Away By The Wind © Sarah Allegra – a rare image without a human subject

So… this new image.  As I’ve said, it’s really been a pretty rough year, all around.  I watched a movie with my mom recently, on a day she came to visit me after my surgery and make sure I actually laid down all day (something I have trouble doing).

Winter’s Tale ended up being very much a “Sarah movie” as Geoff calls them.  Critics weren’t overly taken with it, and I can see their arguments, but at the end of the day, I still really enjoyed the movie.  It’s hard to make mythic, hopeful movies which are sweet without being cloying or heavy-handed, and I felt that Winter’s Tale balanced itself well.  It’s also very beautiful visually and several of the themes inspired new creations of my own.

Richness In Winter © Sarah Allegra

Richness In Winter © Sarah Allegra

One of the movie’s main points is that “everything happens for a reason” (even the bad things).  This has been such an incredibly trying year; right now I can’t imagine good reasons for the numerous bad things which have hounded Geoff and me this year.  This image is sort of a peace-offering in a way.  A symbol to the universe to say I don’t know what the purpose of these things could have been, but I’m going to trust that there is a reason.  And not just any reason, but a good one.  One I will look back on later and smile, thinking of all the heartache and knowing it had been worth it.

This is the attitude I want to start 2015 off with.  A humble admission that I don’t have all the answers, and never will, but that I am continuing my direction of my life in the hope that tremendous good will be found along this path.  At the moment it feels a bit like a blind faith, but I have decided this is the mindset I need to start off 2015.  I am taking my leap; I hope the universe catches me.

Reuniting With The Stars © Sarah Allegra

Reuniting With The Stars © Sarah Allegra

Thank goodness Byron was around to lend me his opinion while I edited Katie 🙂

Byron giving me his opinion while I edited Katie

Vegan “burger” patties, mashed garlic cauliflower and baked potato, in case you’re curious what I was eating for dinner that night 🙂

 

What are you holding onto for 2015?  What plans are you making?  What hopes do you have?  I’d love to hear them!

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“She twines her spine up slowly

Toward the boiling sun

And when I touched her skin

My fingers ran with blood”

-True Detective’s Theme Song “Far From Any Road,” by The Handsome Family

Toward The Boiling Sun - detail- © Sarah Allegra

Toward The Boiling Sun – detail- © Sarah Allegra

It occurs to me that Cacti and Sinuses sounds like a weird band name 🙂

Here we have another True Detective-inspired image for my Pop Culture set of images.  This one was inspired more directly by the song used in the show’s title sequence, Far From Any Road, by The Handsome Family.  The song’s lyrics tell the story of a cactus which blooms once every thousand years.  Anyone who witnesses the rare event is driven mad by it.  Which, considering how much inspiration the show took from Robert W. Chambers’ The King In Yellow, a short story collection about a fictitious play which will drive any viewers or readers  insane, feels perfectly fitting.  It also is a brilliant pairing in mood and style for the show; the images and beautiful double exposures all work in such harmony… it’s the most beautiful pairing of music and television.

I don’t think my imagination is anywhere near being done inspired by True Detective though!  It’s the show that just keeps giving and giving 🙂

I’d like to clarify that I did not actually force Katie Johnson to sit nude in the middle of a cactus pile.  No models were harmed in the making of this image!  I composited an image I shot of Katie from a high angle with images I shot of my neighbor Donna’s cacti and blended them together in Photoshop.  Thanks to Geoff for steadying the ladder I was on shooting the cacti and helping to make sure I didn’t get stuck by any of their needles!

Changing the subject; at this point, I’ve had eight colds since the end of July, one of one which lasted for 3 weeks, two ear infections with the colds and strep throat another time, so I am having sinus surgery tomorrow.  Apparently my sinuses aren’t draining like they’re supposed to, the germs are never really leaving and they keep taking over my body again and again.  Despite my generally poor health with the fibro and ME, my sinuses haven’t really ever been an issue up till now, so I’m hopeful that the surgery will clear things out and this will stop being an issue.  On average, I’ve only had about two to three weeks between colds for the last three and a half months and I can’t tell you how VERY TIRED I am of having colds.  Lots of acute illnesses of top of chronic illness feels terribly unfair.

The last couple months have been rough health-wise, but I’m very eager to let the doctor clean me out and hopefully set me down headed the right direction!  I’ve been told to expect to feel extra crappy for a while after the surgery, and I was able to get a few simpler images edited before today in case I’m feeling really terrible for a while, so there shouldn’t be any big break in images being posted.  I will also have my wonderful husband Geoff to help me through my recovery; he has had this exact surgery before, which I’m sure will be very handy to help me figure out how to best deal with whatever negative effects I feel from it.  He’ll be with me the whole day of my surgery and the next, and after that I should be ok to be on my own.  But I’ve got my wonderful neighbors right next door in case anything comes up!

I’m chomping at the bit to get the surgery over with so I can start actually feeling better, but of course I’m also a little nervous about it.  So wish me luck; your good thoughts and energy will be very welcome!  I’ll try and update the blog when I’m feeling up to it.

Anyone else here on Instagram?  I just joined recently; let me know if you’re on there!  Also, if you missed it, please see my last post about the near extinction of wild lions, as portrayed through Travis Weinand in DreamWorld; a cause very important to me!

One of the things I love about working with Katie is how her heavy dance background translates so beautifully into her modeling.  She is just always so graceful and effortlessly aware of every part of her body, able to emote even through her fingers and toes.  With that said, please enjoy Katie’s beautiful work in this latest image of her!

Toward The Boiling Sun © Sarah Allegra

Toward The Boiling Sun © Sarah Allegra

Toward The Boiling Sun - detail- © Sarah Allegra

Toward The Boiling Sun – detail- © Sarah Allegra

Toward The Boiling Sun - detail- © Sarah Allegra

Toward The Boiling Sun – detail- © Sarah Allegra

Toward The Boiling Sun - detail- © Sarah Allegra

Toward The Boiling Sun – detail- © Sarah Allegra

Thanks, Katie!  You’re always beautiful!  And thanks to everyone in advance for your well wishes!

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Before I forget, I want to thank everyone who so lovingly came together for my friend Erick!  I am extremely happy to say that he is doing much, much better and has been released from the hospital.  He isn’t through this rough patch yet, but it seems the worst is behind him and his spirit has been lifted for the fights ahead.  Thank you all dearly for your thoughts, wishes and prayers.  I know it all made a difference.

I wanted to let you all know that I’ll be taking a “vacation” for the next week or so.  I’m not going anywhere; in fact, the whole point is for me to stay at home and really, really rest.  August was one of the worst health months I’ve had in a long time, including two urgent care visits (very early in the morning) two appointments with my GP,  a 5am call to the 24 hour nurse hotline (which led to one of the GP visits but I was worried I needed to to the emergency room) two colds, one ear infection, one thing which I thought was another ear infection and turned out to be allergy-related, countless migraines and almost as many nights of insomnia as nights where I slept.  It was just a really hard month.

I had a few photography things I needed to take care of, but as of now, I’m taking a little time off.  I’m thinking a week or so, but obviously I can tinker it to fit how I’m feeling.  I may not be on social media as much for the next few days and I may or may not post a photo next week.  I actually have one ready to go but the posting requires more energy than you’d think, especially if it needs to be promoted in any way.  So that’s all to say, I’m going to hunker down and try and stay in bed in my PJs as much as possible for the next week.  I may be a little quieter online, but it won’t be forever.  🙂

And that leads me neatly into two other things I’ve been trying to find time to say between all the craziness.  One is a guest article I wrote for MESupport.Co.UK.  Louise, who runs the site, was very generous with letting me pick the topic I wanted to write about and also being extremely forgiving about how long it took me to actually get the article to her!  It was fun to write it once I actually could, and I got to use a story my dad likes to tell about me when I was very little, so give her a read 🙂

I was discussing the ALS Ice Bucket Challenge with @RidgeBackRogue, who also has ME, a few weeks ago and wondered out loud what we could do for ME that would be similar.  One of the problems with the Ice Bucket Challenge is that people with severe ME would never be able to do it; they can barely tolerate light, let alone ice-cold water.  It would be uncomfortable and a little harmful even for me, and I’m just moderate. We wanted it to be something that anyone of nearly any health level could do.

She immediately came up with a great idea: The ME Movie and Chocolate Challenge!  Guess how it works.  Within 1 week of being challenged, you must watch any movie of your liking while eating something with chocolate!  We’re pretty forgiving here, so if you don’t care for chocolate, you could substitute whatever you like best.  Then you donate the average price of a movie ticket to an ME charity – I like the Microbe Discovery Project for the US and RidgeBackRogue suggests Invest In ME for UK residents!

And while those with the most, most severe form of ME still wouldn’t be able to participate, the poor souls, this is accessible to people of a wider range of the health spectrum.

So that’s it!  I’ll be doing my ME Movie and Chocolate Challenge over the next week… what should I watch?  If I had to pick right now, I’d probably go with Cloud Atlas, The Green Mile or In Bruges… or just a bunch of episodes of Breaking Bad, True Detective or Rectify; enough to make up a movie’s-length of time.  I don’t see how I can go wrong with any of those choices!

Would anyone like to volunteer to be next?  Extra karma points to you if you do 🙂

In Between Awake And Asleep - this is what I plan on doing for the next week; magically hovering over the bed.  Or maybe I'll deign to actually lay in bed.  With PJs that are actually comfortable.  And sleep.  That all sounds better.

In Between Awake And Asleep – this is what I plan on doing for the next week; magically hovering over the bed. Or maybe I’ll deign to actually lay in bed. With PJs that are actually comfortable. And sleep. That all sounds better.

 

 

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My dear friend and frequent collaborator Katie Johnson has recently started a new video series which profiles the artists she works with frequently.  I was honored to be featured in the first of her videos!  She put a great piece together which includes an interview with me and lots of behind-the-scenes peeks into how we work.

Take a look!

I often think of lines from the song the princess sings in Peter S. Beagle’s legendary work The Last Unicorn:

Oh, I am a king’s daughter
And I grow old within
The prison of my person
The shackles of my skin

And I would run away
And beg from door to door
Just to see your shadow
Just once and nevermore

The prison of my person, the shackles of my skin” perfectly describes how I feel about my physical body most days.  Though I doubt Mr. Beagle had ME in mind when he wrote it, it resonates so strongly with me.  And I’m sure people with other chronic illnesses will be able to identify with it; it’s a pretty universal problem across the chronically ill spectrum.

Feeling so trapped has always made me instantly know something of what Amalthea felt at finding herself in human form.  I imagine it was even harder for her though.  The disharmony we chronically ill feel with our body was something I’d wanted to express in my Enchanted Sleep series for quite a while and I was glad to finally bring the image to life!

There’s something more visceral about images than you often can’t replicate with words.  Words are powerful, they can build and tear down mountains, but the visual world offers the same information in a different form.  One that, if used well, can strike like a snake and bring instantaneous understanding.  That’s my hope with this series; to illustrate the life of a person with myalgic encephalomyelitis in a way that reaches where words cannot.

I will admit… I’d beg from door to door just to catch a glimpse of a unicorn’s shadow too 🙂

Here’s a look at the final image from our shoot:

Inside Looking Out

Inside Looking Out

And a detail shot:

Inside Looking Out - detail

Inside Looking Out – detail

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First of all, happy Thanksgiving to all who celebrated it!  I had planned on a Thanksgiving post, listing what I’m grateful for and whatnot, but I woke up yesterday with a swollen, very unhappy wrist on my dominant hand.  I’m being ginger with it today, and trying to really limit my computer use, but I did want to get this timely post out.

So, the holiday shopping season has officially begun!  I, for one, despise the idea of shopping on Thanksgiving or Black Friday.  Crowds are not my thing in the best situation.  Even a gentle trip to the grocery store on an average day can be too much for me.  This is my hiding out period where I really try to leave the house as little as possible.

A less stressful approach to holiday shopping, in my opinion, is in Small Business Saturday and Cyber Monday.  Now, I may or may not technically qualify as a “small business,” but I think I fit the spirit of it if not the letter 🙂  You don’t get much smaller than buying from a single person!  And Cyber Monday?  Heck yeah, I’ve got that covered!  Everything of mine is available online.

And what, pray tell, are these wondrous wares?  Well, let me give you a little run-down!
I have blank greeting cards available at my Red Bubble shop!

One of the many blank greeting cards I offer.

Personally, I love having a stash of blank greeting cards in a drawer, ready to go at a moment’s notice!  You never know when you might need them.  And I’ll confess, I sometimes buy cards for their sheer beauty, with no intention of giving them away.  Those ones usually end up on my wall somewhere.  Either way, they’re very well-made, handy and inexpensive!  And if there’s an image you’d like but don’t see in my shop, let me know; in almost every case I can add it for you!  Stocking stuffers, anyone?
I also sell 2014 collectable calendars!

Sarah Allegra 2014 Calendar

Sarah Allegra 2014 Calendar

Each year I put out a new calendar with 12 of my most popular recent works.  This year’s batch includes images from my DreamWorld and actor portraits series as well as my CFS/fibro/ME series Enchanted Sleep.  I genuinely love the quality Red Bubble puts into their calendars; they’re printed on gorgeous, thick, heavy paper which is perfect for jotting down as many notes and reminders as you’d like!  Plus, I love the extra magic the calendars sprinkle into every day.  And need I tell you they make excellent gifts?  🙂

On a side note, I keep my Red Bubble prices low so that they’re available to as many people as possible.  I don’t make much from these sales, but it’s important to me that as many people as possible have access to my images.

For those looking for a unique gift, either for themselves or someone they love, my on-line, self-discovery-through-photography course Introspective is an excellent choice!

Introspective

Introspective

Introspective is a fun and truly unique, eight-week experience.  Each week I will guide you through a new concept to explore with photography, such as love, fear, secrets and joy.  What do those subjects mean to you?  And how would you portray them in a photograph?  Let’s find out!  Self portraiture is encouraged (as I think it’s an invaluable way to know yourself better), but by no means is it required.  At the end of the eight weeks, you’ll have gotten to experience yourself in a new way and learned things you never knew before.

This would be perfect for your artsy sibling, the person who has everything or anyone with a desire to have an adventure and come out knowing themselves better!
And of course there are always prints available!

Sarah Allegra Etsy Shop

I sell prints through my Etsy shop, which are printed by an amazing local printer.  They are printed on museum-quality, archival, thick, luscious paper which is not unlike watercolor paper.  All the images are printed in very small, limited edition runs and come individually signed and numbered.  They come in three different sizes and are truly stunning.  These really have to be seen to appreciate how beautiful they are.  The level of detail captured in these prints is spectacular.  And as with the cards, if you would like a print of something and you don’t see it in my shop, just let me know!  In almost every occasion, I can accommodate your request.

Thank you to everyone for supporting my art through your kind comments, well wishes and purchases.  I so appreciate all of them and I hope everyone has an excellent holiday season!  Here’s a lovely DreamWorld image, featuring the gorgeous Katie Johnson!

Faerie Dust

Faerie Dust

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I want to give you all a few quick updates here on the blog.  First though, I’d like to introduce my first Blackfish-inspired photo today, titled “Concrete Cell.”  It is the first in a series, but I was too excited to share this photo to wait until they’re all finished.
The often-cited comparison of SeaWorld’s whale enclosures being the equivalent size of a bathtub to you or me not only deeply saddened me, but also sparked the idea for this photo.  Imagine it.  When you’re not forced to perform, you live in this sad, colorless, sterile world of concrete and shadows.  The intelligence of these whales makes their living conditions even crueler and more heartless; sentient beings shoved into tiny compartments where they die a little more every day.
If you also agree that SeaWorld’s practices are abusive and need to be changed, please see my open letter to Jack Hanna regarding his defense of SeaWorld.  You can read more about the issues there and take action with petitions to sign!Thank you to Katie Johnson for her beautiful underwater modeling in this!  Underwater modeling is a skill unto itself and quite tricky, but she makes it look effortless.
Concrete Cell

Concrete Cell

Secondly, there has been a lot of response to my post about suicide and Chronic Fatigue Syndrome/myalgic encephalomyelitis.  This is one of those topics that is very, very real, but rarely discussed in public.  Or even in private, for that matter.  There is always a correlation between any kind of chronic illness and suicide, because there is only so much a person can endure.  This post has been shared quite a bit already, but I would love for it to reach even more people, and hopefully find its way to the original person who found my blog by searching “I have Chronic Fatigue Syndrome and I want to give up.”  I understand that feeling.  My blog will rage in its way against cruelties, abuses and atrocities, but its arms are always open to the ill, the hopeless, the voiceless and those in need.  This is not a place of judgement.  This is a place of love and acceptance.

Lastly, my 2014 calendars are now available!  Printed on thick, gorgeous paper, each month features a popular new image from my most recent works, including photographs from my DreamWorld, actor portraits series and my CFS/fibro/ME series Enchanted Sleep.  So add a dose of magic to your day…or the day of someone you love…with a collectable calendar!

2014 Calendar

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I like to check my blog statistics every few days.  You’re shown a wealth of information, some helpful, some less so.  In theory you can use this info to fine-tune your posts to get the maximum response… for me, it’s mostly just interesting, as I’m going to write what I’m going to write, regardless of how popular it is or isn’t.

One of the pieces of information it shows are the keywords people type into search engines which lead them to my blog.  By far and away, the most frequent phrase that pops up is “Veronica Ricci nude” or some variant thereof.  For a long time, the second most common phrase I’d see was “cyborg costume” (because of this photo); currently, people looking up things about Jack Hanna and Blackfish come my way a lot.  Sometimes the phrases are weird and creepy, but it’s still always interesting for me to see what people are looking for when they, intentionally or not, find my blog.

Recently I saw a very new phrase come up: “I have Chronic Fatigue Syndrome and I want to give up.”  My heart just about broke.  So if you’ll indulge me for a moment, I’d like to address the person who typed that.

 

I know how you feel.  This is a shit hand to be dealt.  It’s not fair, and it’s not your fault.  I understand why you feel like giving up.  It’s something everyone with any chronic illness of this caliber has to deal with.  The idea of having to fight the same dragon every day for the rest of your life is utterly overwhelming.  I think of it like the disease form of water torture; it’s not so much the individual moments which break you, but how they build up on each other.

I hope that whatever you found on my blog gave you some hope.  I hope that at the very least it helped you feel less alone.  I wish that I could promise you that there will be a cure soon, but we don’t know.  Regardless of what your precise situation is, you don’t have to bear it all yourself.  There is a wealth up support available online, and I personally have found great help from seeing a therapist who is a perfect fit for me.  You can also contact The Samaritans if you’re feeling really desperate.  I’ve done so myself on more than one occasion, and they really do help.

I would like to hug you and tell you everything will be ok.  Since I can’t, I hope that you can feel like love and kinship I am writing this in.  You are not alone.  I hope you’re able to find the strength to keep going.  Just as much as it becomes so overwhelming to think about the rest of your life being like this, I find it more bearable when you concentrate just on today.  Just worry about getting through this one day.  That can be more than enough overwhelming just on its own without projecting into the future.  I hope you come back, read this and it helps you, even a little bit.  And no matter what you feel from the people who surround you in your daily life, please know that I at least love you, and I care about you.

If you’d like, you can email me directly at sarah@sarahallegra.com.  You are not alone, and you are loved.

 

Much love to a fellow spoonie <3

Much love to a fellow spoonie ❤

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During the five years of being chronically ill to the point of having to change my life to revolve around my illness, I have tried to keep my spirits up.  I’ll readily admit I’m naturally more of an Eeyore, but I also know that having a positive outlook can have a huge impact on one’s quality of life.  So I try to train my brain to be on the lookout for silver linings; for the beautiful amidst the ugly.

Of course, I can’t speak for everyone with ME, everyone with fibro, or everyone with other chronic illnesses.  These are just the shiniest of the silver linings that I have discovered personally.  Yes, there is a lot of bad along with this good, but that’s a subject for another time.  For now, I want to highlight the positives.

 

1. You Become More In Tune With Your Body

I, for example, have learned that I am quite sensitive to nearly all medications, even more than my small frame would account for.  There is a certain cold feeling I get in my stomach which is the warning for a bout of coldsweats and vomiting coming.  While I used to drink lots of caffeine and couldn’t get through an afternoon without some kind of energy dose, I now drink black tea in the morning, and rarely anything beyond that.  My body felt noticeably cleaner and fresher after I made the switch, and again when I became vegetarian.  You learn to listen harder to the signals your body gives you and take them more seriously.

Vanity's Murder

Vanity’s Murder

 

2. You Learn Who The True Friends In Your Life Are

After the fifth time in a row of my having to reschedule an outing due to the unpredictable whims of my body, most people would stop trying to make the outing happen.  I have been extremely fortunate to have wonderful people in my life who are as understanding about my forced flakiness as anyone who doesn’t have a chronic illness could be.   They know by now that evening events, large crowds and physical exertion are especially hard for me, but they continue to invite me to dinners and parties, always letting me know that it’s ok if I’m not up to it.  I love them for continuing to invite me, even when I have to say no 90% of the time, but even more for not holding it against me.

To The Lost

To The Lost

 

3. You Come To Terms With Your Mortality

Everybody dies.  That is an unavoidable fact.  I’ve found that I, along with many of my chronically ill peers, have given our lifespans much greater thought than our healthy counterparts.  Whether our disease is something known to shorten your lifespan or whether it’s a roll of the dice, we are generally able to come to peace with the knowledge we won’t be around forever much earlier in our lives than is typical.  This can even lead to what I call The Walter White Effect, which essentially says that when you have faced the fact that your life may not be as long as you had once believed, you are motivated into working much harder in the present.  It’s true, any of us could go at any time in an untold number of ways.  But there seems to be a quieter acceptance of this inevitable fate when you’ve had your body occupied with chronic illness for a long time.

All Hail The Queen

All Hail The Queen

 

4. You Life Distills Into The Most Important Components

I have days when there are only a couple hours (often scattered through the whole day) when I can actually get anything done.  Usually I’m able to get a little bit more done than that, and it helps that much of what I do can be done laying in bed with my laptop, but if you only had three or four hours to accomplish anything, what would you use that time for?  Lunch with friends?  Taking care of your pets?  Showering?  Taking photos?  Making love?  While chronic illness robs you of so much time, it also forces you to look long and hard at each of the things you do choose to engage in.  I won’t, for example, spend time editing photos which I’m less than satisfied with.  Which activities you choose to keep can say a lot about what’s truly important to you.

Beloved Of The Crown

Beloved Of The Crown

 

5. You Look At The Big Questions

Can you believe in a god who would allow you to live your life so sick with no cure?  Would that strengthen your faith or wipe any trace of it from your life?  What kind of legacy will you leave behind?  If you’re too sick to work and thus always short on cash, how do you define success in your life when society places so much emphasis on status, power and wealth?  If you, like most of the chronically ill, had to scrap your original plans for what you wanted to be when you grew up, how will you find meaning in the life you’re given?  What is the meaning of life when that life is often confined to a single room?

In Between Awake And Asleep

In Between Awake And Asleep

 

This is, of course, an extremely subjective round-up, based mainly on my own experiences.  What will my distilled, concentrated life look like?  What causes will I champion and where will my energy reserves go?  Where will yours?  Chronic illness tends to create mini philosophers, whether we will have it or not.  And while I will never have all the answers, the questions are still worth pondering.

 

Fae Light - Dedeker looks like she's pondering Big Questions.

Fae Light – Dedeker looks like she’s pondering Big Questions.

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