This is one of those things that built up slowly in my head for a while, then suddenly crystallized with numerous people and sources suddenly (unaware of each other) all started giving me the same advice. After some thought, and a little bit of regret, I’ve decided that they are right and I need to make some changes in how I approach my art.
I need to slow down. This is very hard for me to do; art is my obsession and I want nothing more than to be producing all that I can as often as I can.
I also need to set my focus more narrowly on DreamWorld. There is SO MUCH that you guys have no idea about yet, and I need to get to the place where I CAN show you all that stuff!
The thing is, I have to accept that for the time being, I have very limited supplies of time, energy and money. I’m hopeful, of course, that I will eventually start feeling better, but for now, I have to accept that this how things are right now. My energy and time allowances have shrunk every year since I first came down with ME. My chronic pain, daily headaches and frequent migraines don’t help anything. Since I’m dealing with far, far fewer productive hours in the day than your average person has, I need to hoard them and make the absolute most that I can with them. None of those minutes can be wasted.
I’m still weighing things, but I may (for now at least) not edit every shoot on my hard drive. Don’t despair, models waiting for images, I’m not saying none of them will be edited, I just have to really pare things down and only spend the time editing images which I REALLY love.
This also means that I’ll probably be putting out fewer images per year. This makes me sad, and is the main source of my resistance to the idea of slowing down. It’s really hard to watch all my friends and colleagues churn out fantastic image after fantastic image and have nothing even on the radar to be shown soon. You get used to a certain amount of being left behind by the rest of the world when you’re always sick, but it doesn’t make it sting less each new time you feel it. I love getting to show you guy a new piece! It’s usually the highlight of my week when I post an image. 🙂 But despite this, I know that this is the right thing for me to do now.
I’m also making some big changes with a lot of DreamWorld concepts; changes which will make the images I do create even better and more impactful, but which requires quite a lot of work on my end which and won’t produce anything I can show you guys, even as a work-in-progress sort of thing. On one hand, I feel dangerously close to being forgotten and left behind while other artists quickly turn out magnificent pieces… but again, I know that I need to do this preliminary work. It’s going to have a ripple effect through all of DreamWorld and the images which come from it will be better than ever! I hope you guys will be patient and not forget about me or DreamWorld in the periods when I have nothing new to show. 🙂
Thank you all for the love and support you have shown me and my work over the years. It really means so much more than I can say! I am so grateful for every single person who enjoys and follows my work. Even if I can’t put out as many images as I have in the past, I can make sure that the ones I do create are the BEST that I can do. It may frustrate me sometimes, but the extra work I’m pouring into DreamWorld is only going to make it better, brighter, tighter, more emotional and more meaningful. Thank you for bearing with me.
You’ll notice there isn’t a new image with this post; that’s kind of the point!
And thank you, as always, to Geoff for being an unending font of wisdom, clarity and sage advice. 🙂
I’m so happy so many of you have joined in my print giveaway! There is still time for you to enter, which is free and easy to do! Scroll down below for details, but most of the ways you enter are simply by sharing/retweeting messages onto various social media outlets – all of which are now embedded in this post! Just head down to the very end and you’ll see all the different ways you can participate without even leaving this page!
If you missed my last post, let me summarize it for you. Today, May 12th is Invisible Illness Day; a day we dedicate to raising awareness about illnesses and diseases which can be deadly and have devastating consequences, yet show little to no outward sign. Every single person with any of these illnesses, such as fibromyalgia, Chronic Fatigue Syndrome, rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, (and, of course, myalgic encephalomyelitis, or ME, which I have*) has been told at least once, “But you don’t look sick.” As if that invalidates our decades of suffering. Oh, I’m sorry I didn’t meet your criteria of what a “chronically ill” person looks like; you’re right, I’m 100% fine! In fact, I’m going to go complete a decathlon, now that I know I’m healthy.
Ok, so clearly simply not appearing outwardly sick doesn’t mean we aren’t ill. In fact, most people who saw me on the street would probably assume I was a perfectly healthy girl; although one who doesn’t put a lot of effort into her appearance. The reality is that I am partially house-bound, I can only drive short distances on very good days, almost all “out of the house” errands have to be done on weekends when Geoff can drive and help me, I’m in constant pain and exhausted every single second of my life. My energy reserves are very low and I have nothing extra to spare on “getting pretty” before I go out. As long as I’m wearing actual clothes (you have no idea how many times I’ve almost left my house without key clothing items), that’s enough for me. Shove on a hat so I don’t have to address my naturally curly hair and I’m good!
While I never overly cared about what I looked like in public, I do find myself missing wearing pretty things. I put far, far more thought and effort into picking out my pajama outfits that my regular clothes outfits. I’ve accrued quite a collection of PJs at this point, so I can at least feel like those are cute and colorful.
While worrying about one’s physical appearance would seem pretty far down on the priority list of someone with a neurological disease with no cure, and it is for me most of the time, it’s a little more than that. It’s just one more tiny slice of normal life that chronic illness takes away from you; one more reason for you to resent it. I don’t actually want to wear the dresses getting dusty in my closet, I want the option to choose to wear them. That make seem like a small difference, but from this side, it feels big.
While I don’t feel like I can spare the energy for looking beautiful most of the time, beauty is still deeply important to me, and it’s important that I leave the world with more beauty in it than I found it. It’s like when you go camping with your dad; the camp site is going to be cleaner when you leave than when you got there (or at least, that’s how it was with me dad ;)). I’ve come to realize that beauty is a big part of why I’m so drawn to art and to create; it’s a very tangible way of leaving the world a little more beautiful. And in this case, it’s taking the hideous ugliness of disease and transmuting it into something lovely.
With that in mind, I want to introduce my latest image to you; the one I will be giving away a 10″ x 15″ print of on May 29th!
I spoke to you a bit in my last post about why this image is so special… and I’m going that a little bit again 🙂 For one thing, this is a DreamWorld and Enchanted Sleep crossover piece; the first image of mine which belongs equally to both worlds. It spoke to me on both levels, and when I was torn about which series to include it in, I finally decided I didn’t HAVE to choose and it could live in both. Because, while in some ways, DreamWorld is a bit of escapism and fantasy for me, it is not all sunshine and rainbows. Not many of its dark characters have been photographed yet, but they will be introduced over time. Even with their benevolent protectors, their King and Queen, the creatures in DreamWorld still have problems.
At the same time, it helps me to look at ME through the lens of myth and fantasy. Viewing it as a dragon to be slain, a mountain to climb, a thorn in my side to bear; they all help me live with the reality of ME a little more easily.
I have long felt a connection between the stories of Sleeping Beauty and my experience with ME. A poison, an enchanted sleep (giving birth to my photo series’ title), hope of an awakening under the right conditions… there is a great deal of overlap. With that said, let me show you the new image!
Now, this file ended up being a composite of… I don’t even know how many images. A LOT. To give you an idea of the huge scale of the piece, here it is with a normal, full-sized image from another shoot with Katie on top of it.
So, just roughly eyeballing it, I’d say this is, what, 5-6 times the size of an average image? And while my camera doesn’t produce the HUGEST files imaginable, this is still pretty darn big. It was such an enormous file, I had to wait until I’d upgraded my laptop before I could actually work on it. Any time I tried to edit it on my old laptop, it would crash my whole computer after about 10 minutes of work. With my new laptop, it only crashes every few days, and usually only crashes Photoshop, instead of my entire system. Much better 🙂 All said, this took almost two years from start to finish. I’d pick it up, do a little work, get overwhelmed and put it back down. Then I decided it had to be done in time for the giveaway, so that gave me the motivation to finish it up.
Katie really endured a lot for this shot, poor thing. The area I shot it in was a naturally ivy-covered area of my old yard… and unfortunately also FULL of spiders and spider webs.
I’d made a homemade spider repellent (nothing which would harm them, just something with tea tree oil to make the area less appealing to a few days) and sprayed it liberally around the shooting area in the days leading up to the shoot.
But despite it, it was a pretty intimidating place to ask any sane girl to lay down in, relax, close her eyes and pretend to be asleep. I promised Katie that I would watch for any spiders actually crawling on her and scoot them off. I promised no harm would come to her, and, bless her, she trusted me.
Now despite it being just covered in cobwebs and spiders, I ended up having to add all the cobwebs in Photoshop. I downloaded a special Photoshop bundle of brushes shaped like cobwebs, which got me started. It took a ton of manipulation of each little bunch to make it look like it way laying naturally over the different areas, adding light and shading to blend it in to the environment.
After I got Katie situated, I climbed up on a ladder and started shooting. But I quickly realized that the ladder wasn’t tall enough to get the framing I wanted, which led to shooting about a million individual frames which I pieced together in Photoshop, which is why it’s such a huge file. There were some challenges in making everything align since I wasn’t using a tripod, but it helped that Katie had trusted me so completely and was lying perfectly still.
I had also shot a purple smoke bomb pouring out of the bottle (separately from Katie, I didn’t think that would be good for her to breath) but then that ended up not really looking right either, leading to another element I had to create in Photoshop.
I always try to do as much work in camera as possible, but sometimes the real world just doesn’t accommodate you!
Katie’s bravery and willingness to do whatever it took to get “the shot” made me create this virtual plaque for her:
Thank you, Katie 🙂 This image would not exist without you. It’s one of my very favorite images and I’m SO happy we went through all the difficulties of making it, even though I wanted to tear my hair out at times!
Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper. You really have to see it to believe it. It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper. What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper. It is magic. And it compliments the ethereal nature of my work so well, it seemed we were made for each other.
And did I mention that this special new print is a $400 value?
Would you like to win this very special print for yourself? Instructions are below! If you already saw my first post, skip on to the info about how to enter, if not, please consider taking a moment to read it and see why I’m so passionate about promoting May 12th and my giveaway!
I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…” But I think it holds true despite it’s spur-of-the-moment conception.
When you spend the vast majority of your time inside your house, it becomes your entire world. If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone). If my house is my world, my bedroom is my home, and my bed becomes my kingdom.
Though it is a queen-sized kingdom, it is a kingdom nonetheless. This is where I am most myself, most honest, most raw, most pure. I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off). This room is most set up for my comfort and is bent to my will. Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed? Because then I can reach it easily, no matter what state I’m in. Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be. In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us. That is, usually, our beds. And in my bed, I rule.
Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art. It’s all the result of verycareful planning of everything. I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model. My shoot is usually the only major thing I have planned for the week. Actually, it’s usually the only major thing I have planned that month. If we’re driving to a location, my model will usually drive us since I’m often feeling too tired. I try to bang out as many concepts as I possibly can, then I crash. Usually the next two or three days will be awful, and I will pay dearly for my shoot. But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed. If I had to sit at a desk, I could not be a photographer.
Using my laptop and my Wacom tablet, I can create art again. There was a while as I was getting sick where I was truly terrified that art would be taken away from me. In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.
Photography has given me a voice. But it’s more than that. It’s given a voice to all of us who suffer from these invisible illnesses. When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have. I unintentionally tapped into an underserved community, and those within it have made their approval loudly known. I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.
ME alone effects millions across the globe. There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go. Most likely, you know someone with one of these illnesses, though it might be undiagnosed. Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is. It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway. For me, I couldn’t stand not knowing.
Your aunt who often complains of pain? Your friend who frequently has to cancel plans? Your sibling who gets migraines which always come at the worst times? They may have one of these diseases.
The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too. We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.
These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill. Sometimes that death is a suicide, as the patients cannot stand the suffering any longer. Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years. They take away our livelihood, our joys, our passions and, eventually, our lives.
Here’s how this giveaway works. It’s going to be very easy and there are quite a lot of ways for you to enter!
First thing: subscribe to my blog if you haven’t already. There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances). Do that, then move on to step two:
You have your choice here! You can either:
Retweet the facts I’ve tweeted about ME (these are embedded at the bottom of this post to make things super easy – you can like or retweet it without even leaving this page!)
(The Facebook and Instagram posts and tweets are all embedded at the bottom of this post to make things super easy – you can like, retweet or share it without even leaving this page!)
Like and re-blog this post if you’re a WordPress user
You can do all of those, too! One note, if you choose to retweet any of my tweets, each new retweet will count as an entry. I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more! 😉 So, for example, if you retweet all 11 tweets, that will count as 11 entries for you. However, if you retweet the same tweet more than once, that does NOT count at as extra entry. The maximum possible Twitter-related entries you can get is 11. The same idea goes for the other social networking sites too. If you share my Facebook post, that’s an entry. If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.
And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!
Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself. A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth. However, there is another way you can get more entries for yourself.
Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries! This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry. If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!
And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to theMicrobe Discovery Project! The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME. I strongly believe in what they do, which is why I have chosen them to benefit from my sales.
It’s a very win-win situation! You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!
On May 29th, I will randomly pick one winner from all the entries and that person will receive the print! It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world! 🙂
One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from. Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what. I want to make sure your purchases are properly accounted for!
Prices are the same regardless of where you buy, so there’s no need to worry about having “hiked-up gallery prices” 🙂 My Etsy shop also has a few pieces of “wearable art,” some of which is inspired by DreamWorld characters and some of which was inspired by The Last Unicorn! There’s also a whole section of ME-inspired images from my Enchanted Sleep series!
Through my Red Bubble shop I sell all of the following items with my images on them:
Aly took and sent me this lovely shot of her carrying her tote bag! It was a bit strange at first to see my friend carrying a bag with my face in it 😉 We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!
INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment. You don’t even have to have an actual camera; your phone will do perfectly well! The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose. You never have to appear in an image unless you really want to. What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!
This is a very relaxed, reflective class. There are no grades and no wrong answers! For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you. Love, joy and fears, for example, are all things you would be asked to create around.
This class is very unique! I modeled it after my own journey of self-discovery as I started taking self portraits. The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I createdINTROSPECTIVE!
And as an extra bonus, here’s a special coupon code for INTROSPECTIVE! Use the code May12ME25 to take 25 percent off the cost of the course! Now that’s a win-win-win!!
I know you guys hear me talk about ME quite a lot, but here’s the thing. It matters. It really, really fucking matters.
There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it. It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades. It all came unraveling in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.
ME does not discriminate. It does not target people by color ,gender, social status or age. It attacks anyone and everyone it can. It destroys lives. It brings promising careers to grinding halts. It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.
It could be your sister. It could be your boyfriend or girlfriend.
It could you.
How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change? How many more patients have to take their own lives in despair? How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them? How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?
No more.
We cannot let this happen to one more person. Too many have endured this already.
We have the power to make radical changes. We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters. We have the power to unlock the mystery of ME and find a cure. We CAN do this. But we must come together, make our voices heard and DEMAND it. It will never be easily handed to us. Too many huge companies are invested in not spending any money on those with ME. But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.
We just have to ask for it loudly enough.
Please join me in demanding change for patients with ME. Things cannot continue the way they are any longer.
And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂 Help me with this. And thank you.
[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.” Depending on which doctor of mine you talk to, I may have three different diagnoses. The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them. For the record, they are NOT all the same disease, but that is essentially how the US treats them. I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it. ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines. If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]
May 12th is recognized across the globe as Invisible Illness Day. Though most people are unaware of its significance… which is part of the problem.
It’s a day for bringing more awareness to diseases like fibromyalgia, Chronic Fatigue Syndrome, rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, along with many others. Diseases which can have horrific, devastating effects on the person’s life, yet may not outwardly show. They can be completely disabling, and the patient still looks “normal” to the world.
And of course, this list includes myalgic encephalomyelitis, or ME, which I have.*
What ME is –
I’ve spokenquite a lotabout MEon my blog, so a lot of you probably know the basics of it. But for anyone new, here’s a quick summary. ME is a neurological disease defined, in part, by:
Profound fatigue which is unrefreshed by rest and sleep.
Chronic pain, which can occur anywhere in the body, but is especially common in muscles and joints.
Insomnia and other sleep disturbances, despite your constant exhaustion.
Post-exertional malaise (meaning you feel worse after you exert yourself — and the exertion can be as simple as a trip to the grocery store or walking to your mailbox).
Neurological problems, a.k.a. “brain fog.” This can manifest in the form of sudden clumsiness, tripping and falling, being unable to recall a word you knew just a second ago, suddenly forgetting how to read or write, forgetting your name… you get the idea.
Headaches of new or worsening kinds (I never had migraines until ME started sinking its talons into me).
Dysfunctional immune systems (if there’s a cold going around, I will get it).
Hyper-sensitivity to any and all stimuli — I describe it as the volume in my brain being turned up to “11.” Noises are very loud to me, lights are bright, smells overwhelming… the scent sensitivity means that anything artificially fragranced makes me nauseated, but it has led to me find small, unnoticed gas leaks inside houses on several occasions.
Post-Exertional Neuroimmune Exhaustion (your brain functions worse in every way after even minimal efforts — mental or emotional efforts as well, not strictly physical ones).
Low threshold of physical and mental fatigue (lack of stamina) resulting in a substantial reduction in pre-illness activity level — things you did before you were sick are now out of the question.
And so on. Because ME affects every system of the body, in a way somewhat similar to multiple sclerosis, the symptoms can vary from person to person, but these are the classic signposts of the disease.
I have what would be defined as a “moderate” case of ME. A mild case would be someone who could still maintain a somewhat normal life, but would probably need extra recovery time after big events, help lifting heavy objects, etc. Moderate, like what I have, is someone who can’t work a normal job, is partly or completely house-bound, may not be able to drive and has a great deal of their life impacted by the disease. Their world becomes much, much smaller and quieter. Severe cases… you wouldn’t wish them on your worst enemy. These are people who are completely bed-bound, unable to care for themselves in the most basic ways, unable to tolerate any light, sound or touch. They lay in dark rooms in silence, often on morphine drips for their severe pain… and this can last for decades. It’s been described as “a living death,” and for good reason. It’s truly horrifying. This is often the time when patients try to take their own lives.
I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…” But I think it holds true despite it’s spur-of-the-moment conception.
When you spend the vast majority of your time inside your house, it becomes your entire world. If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone). If my house is my world, my bedroom is my home, and my bed becomes my kingdom.
Though it is a queen-sized kingdom, it is a kingdom nonetheless. This is where I am most myself, most honest, most raw, most pure. I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off). This room is most set up for my comfort and is bent to my will. Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed? Because then I can reach it easily, no matter what state I’m in. Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be. In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us. That is, usually, our beds. And in my bed, I rule.
Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art. It’s all the result of verycareful planning of everything. I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model. My shoot is usually the only major thing I have planned for the week. Actually, it’s usually the only major thing I have planned that month. If we’re driving to a location, my model will usually drive us since I’m often feeling too tired. I try to bang out as many concepts as I possibly can, then I crash. Usually the next two or three days will be awful, and I will pay dearly for my shoot. But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed. If I had to sit at a desk, I could not be a photographer.
Using my laptop and my Wacom tablet, I can create art again. There was a while as I was getting sick where I was truly terrified that art would be taken away from me. In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.
Photography has given me a voice. But it’s more than that. It’s given a voice to all of us who suffer from these invisible illnesses. When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have. I unintentionally tapped into an underserved community, and those within it have made their approval loudly known. I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.
ME alone effects millions across the globe. There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go. Most likely, you know someone with one of these illnesses, though it might be undiagnosed. Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is. It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway. For me, I couldn’t stand not knowing.
Your aunt who often complains of pain? Your friend who frequently has to cancel plans? Your sibling who gets migraines which always come at the worst times? They may have one of these diseases.
The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too. We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.
These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill. Sometimes that death is a suicide, as the patients cannot stand the suffering any longer. Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years. They take away our livelihood, our joys, our passions and, eventually, our lives.
A DreamWorld/Enchanted Sleep crossover print giveaway!
I try to always do something around May 12 to help bring awareness to ME and its sister diseases. This year, I’m going to be giving away a print of a brand-new image… one which won’t be revealed until May 12th itself. It’s going to be a really, really great image though, I can promise you 🙂
This one will feature model Katie Johnson, and it’s so complicated, I’ve been working on it on and off for about two years. I had to put it aside for a long time until I upgraded my laptop. The file size was SO huge, I could only work on it for about ten minutes before it would crash my entire computer. Obviously, that didn’t work for me. It’s still a monster of a file, but on the new machine it only crashes Photoshop every few days, which is much better..
This image will be very unique in that it straddles both DreamWorld and Enchanted Sleep, a foot in each world like the Pillar of Hercules. No other image of mine does this. It will be a first on several fronts!
Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper. You really have to see it to believe it. It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper. What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper. It is magic. And it compliments the ethereal nature of my work so well, it seemed we were made for each other.
Did I mention that this special new print is a $400 value?
Is your interest peaked? Want to win the print for yourself? Instructions are right below. 🙂
Here’s how this giveaway works. It’s going to be very easy and there are quite a lot of ways for you to enter!
First thing: subscribe to my blog if you haven’t already. There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances). Do that, then move on to step two:
You have your choice here! You can either:
Retweet the facts I’ve tweeted about ME (these are embedded at the bottom of this post to make things super easy – you can like or retweet it without even leaving this page!)
Like and re-blog this post if you’re a WordPress user
You can do all of those, too! One note, if you choose to retweet any of my tweets, each new retweet will count as an entry. I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more! 😉 So, for example, if you retweet all 11 tweets, that will count as 11 entries for you. However, if you retweet the same tweet more than once, that does NOT count at as extra entry. The maximum possible Twitter-related entries you can get is 11. The same idea goes for the other social networking sites too. If you share my Facebook post, that’s an entry. If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.
And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!
Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself. A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth. However, there is another way you can get more entries for yourself.
Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries! This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry. If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!
And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to theMicrobe Discovery Project! The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME. I strongly believe in what they do, which is why I have chosen them to benefit from my sales.
It’s a very win-win situation! You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!
On May 29th, I will randomly pick one winner from all the entries and that person will receive the print! It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world! 🙂
One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from. Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what. I want to make sure your purchases are properly accounted for!
Prices are the same regardless of where you buy, so there’s no need to worry about having “hiked-up gallery prices” 🙂 My Etsy shop also has a few pieces of “wearable art,” some of which is inspired by DreamWorld characters and some of which was inspired by The Last Unicorn! There’s also a whole section of ME-inspired images from my Enchanted Sleep series!
Through my Red Bubble shop I sell all of the following items with my images on them:
Aly took and sent me this lovely shot of her carrying her tote bag! It was a bit strange at first to see my friend carrying a bag with my face in it 😉 We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!
INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment. You don’t even have to have an actual camera; your phone will do perfectly well! The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose. You never have to appear in an image unless you really want to. What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!
This is a very relaxed, reflective class. There are no grades and no wrong answers! For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you. Love, joy and fears, for example, are all things you would be asked to create around.
This class is very unique! I modeled it after my own journey of self-discovery as I started taking self portraits. The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I createdINTROSPECTIVE!
And as an extra bonus, here’s a special coupon code for INTROSPECTIVE! Use the code May12ME25 to take 25 percent off the cost of the course! Now that’s a win-win-win!!
I know you guys hear me talk about ME quite a lot, but here’s the thing. It matters. It really, really fucking matters.
There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it. It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades. It all came unraveling in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.
ME does not discriminate. It does not target people by color ,gender, social status or age. It attacks anyone and everyone it can. It destroys lives. It brings promising careers to grinding halts. It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.
It could be your sister. It could be your boyfriend or girlfriend.
It could you.
How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change? How many more patients have to take their own lives in despair? How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them? How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?
No more.
We cannot let this happen to one more person. Too many have endured this already.
We have the power to make radical changes. We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters. We have the power to unlock the mystery of ME and find a cure. We CAN do this. But we must come together, make our voices heard and DEMAND it. It will never be easily handed to us. Too many huge companies are invested in not spending any money on those with ME. But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.
We just have to ask for it loudly enough.
Please join me in demanding change for patients with ME. Things cannot continue the way they are any longer.
And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂 Help me with this. And thank you.
[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.” Depending on which doctor of mine you talk to, I may have three different diagnoses. The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them. For the record, they are NOT all the same disease, but that is essentially how the US treats them. I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it. ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines. If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]
Last summer, I had recently watched some of the BBC’s episodes of Life, their truly excellent series on all kinds of wildlife. I was watching it while I edited other images (I rarely watch TV without doing a second activity, unless we’re talking about shows like True Detective, Breaking Bad, Boardwalk Empire, Rectify, etc, which all demand my full attention) but my editing suddenly halted when this segment came on.
I remember backing it up and watching the whole piece again, mesmerized, deeply touched and saddened by such complete, beautiful devotion from any creature to another. As I watched it a third time, I knew a photo was going to come out of it somehow… it was resonating too deeply with me for anything else to happen.
Now, as to how the medieval elements worked themselves in… I can only give you guesses since I’m not really sure how my brain made the jump myself. I know that part of it had to do with wanting to give her eight “tentacles” of some kind (which made its way into her hair) and wanting to give her a pouch to carry her eggs in. For some reason, I thought of a kirtle, a medieval garment which lasted for several centuries. The kind I was picturing were from, I believe, earlier on in the medieval period and looked more like what we might think of as over-dresses or fancy aprons.
A red kirtle from a modern pattern by Burda.
Researching medieval garments inevitably led to medieval hair… images like these set my brain whirling.
You can see how the braided and wrapped hair, along with beautiful headdresses leaked into my character.
As usual, I wasn’t sure how I was going to do this when I started into it.
I had a longish, dark brown wig which I’d bought very cheaply quite a while ago. When it arrived, I realized why it had been so cheap; it was already snarled and tangled before I’d even taken it out of the package. I halfheartedly attempted to work the same wide-tooth comb I use for my own often snarled and tangly hair and quickly realized it was a futile endeavor. I tossed the wig into the back of the closet and mostly forgot about it.
When this project came up, I remembered it though. Even though it poofed up like a drying poodle as I combed it, that would work in this case, since I’d be wrapping it up and looping it around. I spent most of one afternoon just combing it out – not detangling it, mind you; there was never any hope of this wig being tangle-free. My best hope was to get it to the point where I could separate it into eight segments. It took all the strength in my arms and they were very unhappy with me for the next few days, but I managed to do it.
In the meantime, I had discovered arm knitting, which I found I could do without a) using much brain power, b) quickly c) without using much muscle power and d) it had very pretty and interesting results. The resulting squares and shapes I made from the looping yarn had such a beautiful, organic look, almost like a coral reef or some other under-sea plant/creature, that it felt completely at home with an aquatic-inspired creature.
After the combing session, I put the wig away for a day or two. I brought it out again after my arms had regained a little strength. Of course this also meant that it had had a couple days left completely on its own without any outside help to start tangling again, so I spent a little time re-combing it to get it back to a manageable state. I quickly arm-knit a band of yarn which would form the circlet of my headdress and made sure it would fit.
I put the circlet of yarn back on top of the hair and began crisscrossing the yarn (which was a beautiful, slightly metallic variegated blend of soft pinks, blues, lavenders and silvers) over the different segments, using liberal help from my glue gun to keep everything in check. Each segment was attached back up to the main part of the circlet after its crisscrossing was done.
The two front, face-framing sections of hair were left for last. I added some looping pieces of yarn between the other segments to make it more headdress-like. The front segments got crisscrossed with their own lengths of yarn and were then attached to the very back of the circlet, forming two large loops on either side of the face, with hair tentacles hanging underneath them.
Then was the fun part: beads! I raided my bead stash, with an eye toward pieces from a very elaborate headdress I’d made which had recently died, spilling beads all over the floor. I knew there were some really cool pieces which I’d used for it, so I repurposed them again in this piece. I didn’t want it to be overwhelmingly be-jeweled and sparkly, just enough bling to make the character look a bit important; perhaps some kind of royalty.
Moving on to her dress, I had a high-necked, sleeveless, pink chiffon dress from Ebay which I’d gotten for little more than a song. Pink isn’t a color I’m usually drawn to that much, but since the original octopus was pink, my character was going to be pink too. I kind of eyeballed the general shape of a kirtle from ivory tulle; a lot was going to happen to it and since it was so light and transparent, it didn’t need to be perfectly symmetrical.
I free-styled a yoke for the kirtle with more arm knitting and added some cap sleeves (which are only visible in some of the images unfortunately). One thing I was finding with the arm knitting was that is is EXTREMELY forgiving. Arm you within an atom bomb’s range of what you were going for? Then it will probably work!
To unify the costume and also enhance the organic, oceanic feel, I arm knitted a piece for the bottom of the kirtle, basically a large triangle, and two smaller, upside-down triangles for either side of the egg pouch. I left several yarn strings loose from the pouch triangles which would be used to tie the kirtle behind the back of the dress, just like a regular apron.
The eggs were leftover from a shoot I did with Paul Telfer as the Sleeper’s Sentinel. I’d had to buy a dozen of the super-large plastic eggs so I had PLENTY to use for other shoots! I kept these fairly simple since there would be a lot going on visually in the images; I started with spray-painting a base coat of a semi-metallic light gold color and added flecks of bronze-black to make them look more like real eggs. Repeat until they look right. I knew I’d only need five or six eggs, since that was as many as would fit in the pouch I’d made so I didn’t waste any time painting extra eggs.
I did do one thing to just one egg though… I found a nail and a hammer and while the egg was still in two pieces, I hammered a hole through from the inside out. Some sharp knives, pliers and more hammering later, I’d created what looked like a fracture in the egg from a chick inside starting to hatch. Eggs = done!
I’d had my faithful model Dedeker Winston in mind for this character the whole time. I usually cast characters in the same way I create them, just by what “feels right.” I had not consciously remembered it, but it turned out there was a really wonderful real-world reason to have Dedeker play the octopus-mother caring for her eggs. Dedeker has been an egg donor many times to couples who are unable to have children on their own. In fact, one family has two children, both from Dedeker’s eggs, and they just requested a third! It’s very unusual for a family to have so many children from the same donor, but I think it’s really lovely that all of their children will be linked in this extra way. And clearly Dedeker produces really fantastic babies! 🙂 Once I remembered that, it felt truly serendipitous that we were shooting this character together.
I knew that my wig was several shades darker than Dedeker’s hair and I had a couple thoughts on how to deal with it. I knew she had a dark brown wig of her own which we could layer under mine, or we could totally cover all of her hair with a wig cap. In the end though, she simply twirled her hair into a low bun, I set the wig on top of her head and since there was so much going on with the hair, it looked completely natural and blended right in. If you looked closely, you could see that some of the hairs on her forehead were a bit lighter than the rest of her head, but I matched them up in about 30 seconds in Photoshop. Sometimes the simplest method is the best!
We set out on a morning last summer to capture these shots of the character I’ve dubbed the Pink Mother. We got started early and the sun was already blazing; it promised to be a miserably hot day but at the moment it was still pleasant. I started shooting Dedeker in a dryer, dustier, yellower scene and led her along a path which gradually got greener and lusher, mirroring the octopus’ journey to find the perfect environment for her eggs to be born into. The color pallet moved from warm and vivid to cool and less saturated, especially in regards to the Pink Mother herself. As she nears death, the paler she becomes until the last shot, where she is very white.
She sacrificed everything she had for her eggs. She loved them, cared for them, caressed them. She journeyed over countless miles to find a safe, green place for them to be born. Though it cost her everything, she never hesitated. And, it seems, her journey was worth it. The cracks in the eggs prove her right. They were brought forth from the deepest love there is, and that can only be the best start to these new beings.
So thank you to Dedeker for being my medieval octopus mother and letting me share your story about your own eggs! And thank you for trusting my vision even if it seemed questionable at the time 😉 You were the perfect, purest-loving mother to those babies!
And now enjoy the full images, some detail shots and behind-the-scenes captures!
But not of beer. Beer would have been so much better.
Well. I’ve been meaning to tell you guys for FOREVER about the adventure I had surrounding my sinus surgery. It’s a little bit long of a story; I will try and keep it brief but there was just a lot that happened, so I can’t promise anything.
From mid-July through the end of October, I was getting colds, repeatedly. I’d get a cold, get over it, have about 2-3 weeks of more or less “normal” (for me) time, then get another cold. One of these colds lasted for 3 weeks, 1 turned into strep throat and another turned into an ear infection so exquisitely painful that I gave serious thought to gouging the ear out of my head. After a string of doctor visits, I was eventually sent to an ENT; an ear/nose/throat specialist. I loved him right away.
He immediately agreed that this was abnormal, took a glance inside my nostrils and since there was nothing obviously wrong inside sent me off for some allergy blood tests and a CT scan of my sinuses. The office was shockingly quick at getting this all set up; I’ve come to learn they are an extremely efficient and well-oiled, patient-loving machine.
The allergy tests showed a mild allergy to Timothy grass and mold, neither of which surprised me and both were too mild to be to blame for my illnesses. The CT scan however showed inflammation and serious congestion in my sinuses, particularly on the right side and more toward the back of my skull. I hadn’t ever really given a lot of thought to just HOW MANY sinus cavities you have in your body, but it’s rather a lot, as this image shows:
My ENT recommended a surgery where he would go in and clean all the cavities out (while I slept deep in anesthesia) because it clearly wasn’t going away on its own. If I did nothing, the cycle of colds every 2-3 weeks would just continue, which was obviously not a livable option. And it also happens that my doctor is not only an ENT specialist, but that he specializes in this exact type of surgery! And Geoff has had this exact surgery twice! I felt I was in very good hands with both of them taking care of me, so I agreed to have the surgery done.
Before
November 4th Geoff woke up very early and drove me to the surgery center. While I’ve had my nerve-blocking injections countless times, this was the first true, actual surgery I was going to have. They knock me out for a short time for the injections, but it’s just a sedation, not actual anesthesia. I was a little nervous, but mostly just excited to have the stupid sickness cycle stop. I woke up with a sore throat; they’d had a little trouble intubating me (I’m guessing because I’m so small) and a little nauseated, but they gave me some nice drugs which cleared the nausea right away. My ENT had taken a swab of the gunk in my sinuses and sent it to the lab to do a culture on it and see if it was anything that needed further treatment. So other than a slightly sore throat, it was all very routine.
After – very sleepy looking. Get used to the “mustache bandage” look. I don’t know why my gown looks like it’s going to fall off at any moment.
The next couple days are a bit of a pain-filled blur in my mind. Thankfully, Geoff stayed home with me to get me through the worst of it. Of course, ALL my sinuses were inflamed and unhappy and my throat was really starting to hurt. I’d expected to feel like I had a bad cold afterward but this was a whole new level of sinus and throat pain which I’d never experienced. Geoff was able to call my doctor and explain my incredibly sore throat (talking was not going to happen from me) and he immediately prescribed the most beautiful, soothing numbing gel to gargle with. It was a little messy, and about the consistency of pudding which made it hard to actually gargle, but oh my GOD did it work. It turned me from the strep-throat severity of pain where breathing feels like inhaling shattered glass into something mildly uncomfortable when it wore off. More points for my doctor!
Over the weekend, I started feeling better and better and by Monday, 6 days after my surgery, I decided I could run a short errand to my nearby craft store, since I had a really spectacular coupon which was about to expire. As I reached for my purse (in a position I’d been in multiple times since the surgery) I felt something warm and wet in my nose. I grabbed a paper towel, not thinking much of it until I saw I’d dripped blood onto the kitchen floor. And then it REALLY started pouring.
I managed to grab a large wad of paper towels and run into the bathroom. I have never bled like this in my life. It was like all the veins in my sinuses just gave up and let loose. It seemed to be coming mostly from the right side of my nose and very far back; if I tipped my head up or even held it level, blood waterfalled down my throat. In a mild panic and not knowing what else to do, since I didn’t want to be swallowing all that blood, I held the paper towels to my face, leaned forward and let it drip into the bathroom sink. And fortunately, I had my cell phone in my pocket, so I called Geoff, who had just gotten to work. I was stuck in the “fright” of the “fright or flight” response and couldn’t think of anything else to do.
We discussed if I needed an ambulance and I just didn’t know; I did notice that after the initial panic, as I tried to slow my breathing and calm myself, the bleeding slowed a little, which gave me some hope. Geoff called the ENT’s office and came right home, but we both knew it would be about 45 minutes before he got there. So Geoff called John, one of my wonderful neighbors, hoping he was home. John wasn’t home but he was close by. He dropped everything and came rushing home to check on me until Geoff got there. I later found out that John had been about to get his car washed and was about to send his car through the machine where the initial cleaning is done and there were people lined up behind him. The car wash people told him it wouldn’t take long to go through the machine and then he could just leave, but John made everyone move their cars so that he could leave right that instant. That’s the kind of people my neighbors are. They more than have my back.
John got home and at that point the bleeding had mostly stopped so we agreed an ambulance wasn’t needed but he sat on the bathroom floor with me and told me stories to calm and distract me until Geoff got home. He was an angel. (And just to be clear, my other neighbor, his wife Donna, would have been equally adept in his role. John happened to be closest to home so he took up the task, but Donna certainly would have done the same if she’d been around. After all, she helped me take care of the opossum littler I found!)
After I’d calmed down and the bleeding leveled off, I took a few photos of the sink to record it. The photos look dramatic, but every person who actually saw the copious blood agrees they don’t do it justice at all; both Geoff and John said it looked like a bad Halloween party decoration. But to give you an idea, here’s one of my cell phone captures.
This photo actually came from Geoff’s camera, not mine. His takes much better photos than mine does. It looks like a fair bit of blood, but trust me, it was much, MUCH worse in person. Geoff was also a saint for cleaning up the whole bathroom by himself, which I felt bad about, but I was under strict orders to REST and lay down.
So Geoff and I went back to see my ENT. He took a look around, determined that yes, I was bleeding rather a lot and decided to pack my nose. Apparently, he’d used a gel-like packing while I was out for the actual surgery; it was similar in texture to Jello. I couldn’t even tell that there was anything in my nose, it was so mild and comfortable. The new packing however was NOT pillowy and Jello-like. I can only describe it like having an entire tampon made of broken glass and cacti bits shoved up one nostril. And that’s after they sprayed a numbing spray inside my nose. My eye watered and watered on that side of my face but I did not cry.
The packing was so incredibly uncomfortable that I couldn’t even talk or all the glass shards and cacti quills jabbed at me from inside my nose. I was to keep it in for two days to really stop the bleeding, then I could have it out. I wasn’t exactly happy, but I was glad to have the bleeding stopped.
Bandaged up with packing up my nose, taped to my cheek
The rest of the day, I communicated with Geoff through gestures, grunts and writing things down. At one point I laughed quietly to myself and wrote “this is like The Leftovers,” on my pad of paper and showed it to him. I was not in the least bit comfortable, but I didn’t worry I was dying imminently anymore and I knew that I could get through two days of pain, high though it was. My doctor made sure that I was well stocked on painkillers before I left, because that’s the considerate kind of guy he is 🙂
The next morning I woke up and realized I was swallowing… and again… and again… and then I jolted upright and rushed to the bathroom because the bleeding had begun again. Since I was sleeping on my back, slightly elevated (like I was supposed to) and the bleeding was coming from so far back, all the blood was just pouring down my throat like a thick, gross waterfall. I had no idea how long I’d been swallowing my own blood, but I was again alarmed that I was bleeding so much, even after the packing was in. It was coming from so far back, it was even behind the packing; it was like it wanted to run down the right side of my nose, but since that was now packed, it was overflowing down the left side and down my throat.
This time when Geoff called the ENT’s office, they told us to just come in right then, so I did, pale, woozy, feeling awful, still in my PJs, since I didn’t dare take the time to get dressed, nor make any movements which might cause my nose to bleed more. I sat in their lobby for a few minutes, while the bleeding had blessedly stopped momentarily, with a huge ball of paper towels clutched to my face and a plastic grocery bag in my other hand in case I started dripping. I laid my head against Geoff’s shoulder, closed my eyes and tried to forgot the lobby full of people who were staring at me in alarm.
The nurses were trying to clear a room for me when I suddenly felt the surge start back up for no reason. Geoff alerted the nurses. One of them brought me a kidney bowl to hold under my chin for dripping, then they were able to usher me off into a room away from the frightened eyes of the other clients.
A kidney bowl just like this! The curved shape makes for good under-face catching.
My ENT was in the middle of surgeries of his own, so I saw one of the other doctors, who was just as lovely and kind as everyone else had been. All the available nurses hovered around, trying to find anything to do to make me more comfortable; one wet paper towels and dabbed my forehead, another brought me some ice water to sip between procedures from the doctor. There was one nurse in particular who stayed right by my side the entire time, no matter how gross it got. She would frequently hold my hand or pat my knee during difficult parts and she was completely sincere about it; she wanted me to feel better and was doing any little thing she could think of. As truly, completely awful as I felt and as unpleasant of an experience as it all was, whenever I remember that nurse, I feel a surge of the warm love she radiated.
This doctor decided to remove the packing, since all it was doing was obstructing the view of where the blood was coming from, so he pulled it out… and my god, I don’t know which was worse, going in or coming out. Either way, it’s not something you want inside your nose. Removing it started a fresh flow, much of which was freely flowing down my face into the bowl under my chin.
The doctor kept needing me to tip my head back so he could see what was happening inside, which meant the blood kept going down my throat and getting swallowed. At one point I started to feel very nauseated (more so than I had all morning). I murmured to Geoff that I thought I might throw up and then a moment later, I was barfing up blood into my kidney bowl. Geoff held this bowl for me under my chin as I filled it, he and the nurse did some sort of quick shuffle with bowls and I filled a second one. If you’re ever given the choice to throw up blood or not, I would strongly recommend you choose to NOT do it. That was probably the grossest thing that’s ever happened to me, and the whole time, Geoff and my nurse stood right by me, holding bowls (she did have gloves, but it still had to be pretty unpleasant), smiling and patting encouragements and holding my increasingly icky hands. They are saints.
Shortly after that, the doctor was able to temporarily stop the gushing and I heard him and Geoff discussing that I would need an emergency surgery that day so they could go in and stop the bleeding for real. I was going to be transferred to a hospital where I’d wait for my ENT to finish his current surgeries, then he’d meet me at the hospital and work on me. They were weighing the options on either Geoff driving me over or having an ambulance come and take me when I asked if I could get up and wash my hands at the sink in the room, since they’d gotten spattered with blood and whatnot. I made it to the sink, slowly, and I washed my hands, carefully, and then… I’ve fainted before, I recognized the rushing deafness and darkness and knew I was about to go out so I hurried to plant my back against the cabinets and tried to slide down to the floor before I lost consciousness, thinking I’d have a shorter fall from there. Looking back, I can see it would have been better to just say, “Hey Geoff, I’m passing out,” but of course you’re not thinking very clearly at the moment. Luckily he saw what was happening so he leaped across the small room, nimbly avoiding expensive machines and he grabbed me before I hit the floor. From his quick action, I never quite lost consciousness, but I was pretty well a rag doll for a few minutes.
At that point, the doctor wisely decided I should travel to the hospital by ambulance.
That was a first for me; an ambulance ride. The medics were all very nice and clearly knew what they were doing; they got me on a saline IV before we even made it to the hospital, which was only a couple miles away. I did decide that I didn’t like laying down and facing backwards in a moving car though, it would have made me carsick if the ride lasted much longer. Although I don’t think that I would have had anything else to try and throw up.
The hospital got me situated in a room pretty quickly, a nice one by hospital standards; it was private, I had my own bed, bathroom and TV and there was a curtain we could draw over the glass doors. Since at that point I was stable, we just had to wait a while for my doctor to finish his other surgeries and come over to the hospital. So for a while, everything was surreal and strangely calm. We watched some TV. I saw my first episode ever of Seinfeld. The staff came, drew blood, determined I did not need a blood transfusion, and switched out my now-empty saline bag for another one.
In my bed at the hospital, still being a trooper. If you look carefully you can see how pale my lips are compared to the rest of my face.
It was fairly late in the day when my ENT was able to get over to me, but he seemed as fresh and alert as if I’d been his first patient of the day. He brought an assistant with him and they used one of the hospital’s anesthesiologists. We spoke to the anesthesiologists for a little while before they took me into the surgery room and Geoff mentioned that they’d had trouble intubating me for the first surgery. The anesthesiologists looked at me assessingly and said, “I don’t think I’ll have trouble,” which he did not.
For me, then it was being wheeled into different rooms and getting various IV injections; the first one made you really, really relaxed and the second made you sleep. As a chronic insomniac, I wouldn’t mind that every night 🙂 As I was told later, once I was under, my doctor looked inside my nose and determined that one artery at the very back of my sinuses, where the two sides join together had simply burst for no good reason, and that was what was causing all the bleeding. He cauterized the offending artery along with a few of its friends for good measure, filled up my right side thoroughly with the Jello packing and let me wake up. I spent a little longer in the hospital, in a different room with Geoff. The anesthesia had again made me a little queasy, but the nurse gave me an injection which made that stop.
Groggy and pale after the emergency surgery, but I could muster the will for a thumbs-up, goddammit
And then we finally went home, more than 12 hours since we’d left it. Thankfully, our neighbors had come and let Calantha outside much earlier in the day and also fed her dinner. She and the cats were happy to see me and concerned about all the medical smells on me. I think I stumbled around for a little bit, while Geoff feed the cats, I found PJs to wear which hadn’t just been in a hospital, all the while Geoff kept telling me to lay down; I don’t actually remember very much of this part. But I think I fell asleep fairly quickly. As soon as I woke up the next morning, I checked myself anxiously; did I taste blood? Was everything ok? And for the first time in several days, I was ok.
Geoff stayed with me for a couple of days which ended up being really needed. I was extremely weak (and extraordinarily pale, everyone kept telling me, even considering my baseline paleness) and almost any movement made me very, very dizzy and light-headed. Geoff made me lay down as much as he could, but I’d have to get up periodically to use the bathroom, or for some other task he couldn’t do for me. It was a procedure though. First, sit up in bed instead of laying down, propped up on a pile of pillows. Let the dizziness pass. Swing legs over side of bed and wait. Let the dizziness pass. Slowly stand and immediately put your hand (and probably face) on the wall while you ride out the biggest wave of dizziness. Once you’re a little more settled, you can probably walk the 10 feet to the bathroom. Geoff hovered anxiously every time I got up just in case I started to go down again.
I went back to see my ENT two days later and my GOODNESS, did EVERY person in that office remember exactly who I was. I made quite the impression on them. (Even now, as soon as I walk in, there’s a chorus of greetings from the whole staff.) Everyone was happy that the surgery had worked and I wasn’t bleeding at all any more. So why did the artery burst in the first place? No one has any idea. It’s just a mystery. My doctor talked about how every now and then, you’ll have a patient who bleeds later on the day of the surgery, or maybe the day after, but 6 days later is unheard of. There I go again, baffling doctors with my weird body. I felt so, so much better compared to how I’d felt at the beginning of the week, I didn’t even really care how weak I was, I was just glad to be not bleeding, not at a medical facility, at home and not nauseated.
One of the first days I was able to stand for long on my own. But look, I’m not at the doctor’s! I’m not at the hospital! I’m wearing 18 layers because I have no blood, yes, but I’m home and on the mend!
My doctor tells me I lost 2-3 pints of blood between the 2 days of bleeding, which is significant, especially for someone as small as I am. And frankly, I’m still feeling the effects of it. I learned that it takes 120 days for a blood cell to replace itself, so even though I’m taking iron supplements to help my body along, it’ll be the middle of February before all my blood is replaced. It’s getting better, but there was a while where I could hardly do anything that involved walking for more than a few feet without getting dizzy and winded and having to sit down. Even now, I still have to be careful. For some reason it there’s any kind of incline I’m walking up, even a very gently sloping one, I feel like Sisyphus pushing his boulder up a hill. I still have to take a break halfway through walking the one flight of stairs at my therapist’s office, and another breather when I get to the top. It is getting better though, noticeably so, and my doctor assures me this is normal for the amount of blood I lost.
I also found out that the culture they’d sent in of the goo inside my sinuses had turned out to be harboring a staph infection, which the antibiotics I was on as a natural result of the surgery should get rid of also. I ended up needing to go two rounds with the antibiotics to really clear it up but it seems to be gone now. And I have not had a single cold since I had my surgery, which goes to prove that really was the cause of all my summer sicknesses.
Overall, this was definitely not a fun experience but there were some good things that came out of it. I know what a caring and attentive ENT I have now, along with the entire staff. I practiced really resting and allowing others to do things for me when I needed them to, which is hard for me to do. I’d much rather just do it on my own even if it makes me pass out than bother anyone else. I watched Winter’s Tale and had a lovely afternoon with my mom, who came to stay with me one of the days Geoff had to be at work. I felt loved and cared for. And then, of course, there’s this… my mom brought this “to cheer me up” because of who was on the cover:
Thanks, mom 🙂 And big thanks my neighbors, my ENT and all of his staff, the ambulance workers and everyone at the hospital, if any of them are reading this somehow. My friends and family were very diligent about checking in with how I was feeling by text, which was perfect as that was about all the communicating I could do.
And of course big, HUGE thanks to Geoff for taking such excellent care of me! He always does, but I always appreciate it!
Originally, I’d intended on posting this around Black Friday/Cyber Monday but I was prevented by forces outside my control. The week of Thanksgiving, Los Angeles was oppressed relentlessly by Santa Ana winds which are always a challenge to my body, but especially so this time.
With my recent sinus surgery (which I still need to tell you about!) I was already at less than my usual lower-than-average health and my sinuses just about lost the will to live once the winds started. This meant almost a week of migraines every day, but even after the worst of it had passed, I was terribly behind on everything I hadn’t been doing while I was laying in the dark with an ice pack on my head. Things fell behind.
This really has no connection to either Black Friday or Cyber Monday now but a large percentage of my sales happen around the holidays, so I hope you’ll indulge this post anyway 🙂
I have a perfect gift idea for anyone in your life (or perhaps you!) who is a bit artsy or introverted or just wants to develop their self-awareness. INTROSPECTIVE: A Photographic Quest is a truly unique experience unlike anything else I’ve found. I created this online workshop after searching for something like it, and not finding anything that resonated with me. In the eight-week course, you will use your camera to explore your inner self, receiving a new assignment each week challenging you to delve into your secrets, fears and joys.
A Student’s Image
No photography experience is needed (although links to more technical information are provided for anyone who wants to learn more about it). This is not a class about photography, it’s about you taking you exploring your inner self, making new discoveries and using art to document what you find. It’s also an extremely therapeutic experience; I based the structure of the class on the healing I found in photography and self portraiture.
A Student’s Image
In a sense, you could say it’s a course about self portraiture since everything you create will be imbued with who you are, but there are no requirements to put yourself within the image, or even have any people in your images. If you find that, say, tea leaves on a saucer express what you’re feeling, that’s just as valid as any other way of expressing yourself!
You will learn about yourself over these eight weeks and make wonderful discoveries. The best, and most long-lasting, of these may just be discovering the profound healing power in art. This is an eight-week adventure full of fun and joy in a safe, love-filled environment. If you want to share your images with the world, you’re more than welcome to, but there’s no requirement to do so. INTROSPECTIVE is about you, through and through.
A Student’s Image
With the new year and its resolutions quickly approaching us, I can’t think of a better gift to start the year off with! Whether you take the class yourself or give it as a gift to someone, I can guarantee that not only will it be completely different than every other gift you or they will receive, but that it will do wonders for the soul of every participant.
To jump-start this for the holiday season, I’ve created a special promotion to receive $25 off INTROSPECTIVE! That’s 30% off! Just enter code INTROXMAS2014 when you check out, whether you’re buying for yourself or someone else 🙂
A Student’s Image
I’d like to point out that INTROSPECTIVE has not been hosted on Udemy for its whole existence; in the beginning, I hosted it on my site. While Udemy shows that very few people have taken the course, the number is actually higher. And somehow some of the reviews have gotten erased as well. Sigh. Luckily, I have another one I can share with you from student Aly, two of whose photos are right above and below!
“I have taken part in Sarah’s Introspective course twice, not because I missed anything the first time, but because her course offers the unique quality of fresh opportunity for introspection and growth, with each round. Much like a “Choose your own Adventure” book (but with far more substance, of course), the beginning, journey and end of thePhotographic Quest are what you make it, with Sarah’s guiding topics, suggestions, questions and technical encouragement, to keep the journey on track. Through her course, I created several self portraits which spoke from my heart, of which I am very proud and thankful to have been guided toward. I absolutely recommend Introspective: A Photographic Quest, for anyone interested in exploring themselves through self portraiture. I’ve come from this course with much more confidence in my ability to realize self portraits, from concept to fruition, and of course, a closer understanding of myself, through this Introspective journey.“
A Student’s Image
Thank you, Aly! Her review sums up what I want the class to be for everyone; something you can return to again and again, adjusting it for yourself each time. And you can retake it at any time; the lesson outlines are downloadable, so you can go through the journey as many times as you want for the one price of admission!
A Student’s Image
With all that said, think about INTROSPECTIVE as a gift for yourself or a loved one. It will certainly be a completely unique gift, unlike anything else they might receive! And with the benefit of being able to repeat it at any point, it just keeps giving 🙂 On top of that, use code INTROXMAS2014 when you check out to get an entire 30% off! I hope you’ll take the journey and go on an adventure!
A Student’s Image
I’d love to hear your thoughts about it, both as you’re on your quest and after. And if you upload your images to the Flickr group for INTROSPECTIVE, they just might get featured here!
Be bold! Go on a quest and return a deeper person 🙂
Mythic Pictures 