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Posts Tagged ‘depression’

It has come to my attention that there is a new drug being tested in Norway that has shown great promise so far in treating ME/CFS.  To my knowledge, this is the first drug that has shown persistent, repeatable improvement in patients – even going so far as to sending some patients into full remission.  It seems like even the most successful cases eventually needed to have the drug re-administered, by my god, even if it were something we had to have injected a few times a year, to have anything that would help, even fractionally, let alone full remission, would be an absolute miracle.

There is a fundraiser going on to try and crowd-source funding for the next phase of drug trials.  If you can at all help, please do.  Even it’s a few years before the drug trickles down to actually reaching patients, just having that in our future would make such a difference.  I’ll have a bit more to say about this in the next few days, but for now, please join me in giving what you can.   And thank you so very much!

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I’ve noticed more and more flowers creeping into my work recently, and I’m not entirely sure why that is… or if it even matters.  Some of it certainly has a great deal to do with particular DreamWorld characters you will meet in the future, but they are cropping up in non-DreamWorld images too.  I could spend a long time analyzing why that is, but I’m not sure I need to.  Sometimes you just have to let things grow as they will.

I gave an interview recently and stated that I never shoot an image simply for the sake of taking a pretty picture.  They always have meaning to me.  This last photo was the closest I have ever come to taking a photo simply for the sake of beauty, although I knew there was some underlying meaning… I just had to figure out what my subconscious was trying to tell me.  Artists need to have faith in themselves and their visions; if they don’t, who will?

I’d had a vision of a girl holding an umbrella filled with flowers pouring down on her, so I set out to make such an umbrella.  As usual, I had no idea how I was going to do it, but I got started.  I had a good umbrella, and I had flowers left over from a few other projects, including this one.  Even though I almost always manage to buy them on some kind of sale, fake flowers are one of the most expensive props I buy, so I try and mitigate the cost by using them as many times and ways as possible.

In my vision, I very, very clearly saw wisteria hanging down, perhaps because I had recently been to the garden center where I lusted after a very expensive wisteria plant.  But I did not have any fake wisteria.  It seems to grow quite rampantly around here, and I toyed with the idea of simply asking an owner of an overly enthusiastic plant if I could cut some off… but ugh.  Talking to strangers.  Talking to strangers and asking them immediately for favors.  No.  I couldn’t do it.  Have I mentioned recently how shy and introverted I am in real life?  So I buckled down and found some reasonably-priced, realistic looking fake wisteria online and ordered it.

I’d had a shoot planned already with a model who would be new to me, although I knew her a bit through other photographers she’s worked with, Katie Johnson.  (Katie is amazing, by the way.  A charming, fascinating person, an absolutely natural and dedicated model… I would highly recommend her to anyone.)   Katie had recently approached me about shooting together sometime, which I was very keen to do!  I planned a number of concepts for her, including the wisteria umbrella, we picked a day and all was set… until somehow the wisteria was delayed, and it didn’t arrive until the day after our shoot.  Oops.  We still had a great time at that first shoot, and since it had gone so well, we decided to plan another shoot soon after, and bring the umbrella concept to life then.

The cats help the only way they know how; by sleeping on things.

The cats help the only way they know how; by sleeping on things.

After my wisteria arrived, I set about attaching it to the umbrella.  I ended up sewing some directly to either the frame of he umbrella or he fabric itself, and broke out my trusty glue gun to attach the flowers along the edge.

Hanging bunches of hydrangea from he umbrella to help fill it out.

Hanging bunches of hydrangea from the umbrella to help fill it out.

Starting To Hang

Note the balancing-on-the-laundry basket move.  The damn umbrella was so awkward and lopsidedly heavy, poised on a curved handle, plus it kept shifting slightly as I moved around…. language was used.  More than once.

More Hung

More wisteria is hung, and the first bit glued to he edge is on.

Just about done!

Just about done!

Since I was working with a limited amount of flowers, I concentrated them on one side.  I knew Katie’s head would be blocking part of he umbrella, so I didn’t want to waste any flowers there.  And filling it out a little in post is fairly easy to do, if you need to.

The day of our reshoot came, and it was a gorgeously overcast morning, which was absolutely perfect for what I wanted.  Katie was, of course, a dream and we were able to shoot several different concepts before calling it a day.  But not before Katie twirled around with the flower-ful umbrella, flinging shoots of wisteria into every direction, which made both of us laugh pretty hard.

umbrella outtake 4 small

umbrella laugh 2 small

The umbrella took it all in stride, not seeming to mind being spun about.  🙂

After the whole thing was said and done, I finally realized what my subconscious was saying with these photos.  They portray a girl who is carrying hope and life, symbolized by the flowers, with her wherever she goes.  While the umbrella protects her physically from the sun and rain, its bigger role is to protect her soul by keeping these positive qualities with her.   There’s an implied symbiosis between her and the flowers; that each of them needs each other for its life, in a way that can be read both literally and metaphorically.

And as I edited these during a week when I was feeling particularly depressed and had been advised to exercise “self care,” this seemed like a perfect visual metaphor.  Keeping the gray world off my back with a layer of protection, under which heady armfulls of my own, beautiful flowers grow.  Not only was it a lovely metaphor, but working on the photo was cathartic in and of itself, so it worked for me on many levels.

Finished photos and detail shots below!

Perennial Parasol

Perennial Parasol

Perennial Parasol

Perennial Parasol -detail

Perennial Parasol

Perennial Parasol -detail

Perennial Parasol

Perennial Parasol -detail

Perennial Parasol -detail

Perennial Parasol -detail. Katie’s extensive dance background often shows itself in little details like this, which she did all on her own.

Efflorescence

Efflorescence

sarahallegra.com

Efflorescence – detail

sarahallegra.com

Efflorescence – detail

Efflorescence - detail

Efflorescence – detail

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I’ve been talking a lot recently about the art side of my life here recently, which is perfectly appropriate; there’s nothing wrong with that.  But I intended for this blog to also touch on other parts of my life, and especially my constant struggle with my health.

I’ll be repeating myself a bit for older readers, but it’s been nearly five years since my body started dramatically falling to pieces.  There were many months before I had any idea what was happening at all, and really, I still don’t have the answers.  Eventually it was determined that I have myalgic encephalomyelitis, aka Chronic Fatigue Syndrome, and mystery chronic pain for which there is NO explanation, except that it may be related to the ME.  Most of you probably know all this already.

The quest over the last few years to find answers and, hopefully, cures or a least treatments, has been extremely frustrating and rarely fruitful.  I have seen nearly a dozen different specialists during this time, and of course I have done tremendous amounts of my own research and reading about anything that seemed like it even might be helpful.  The problem always boils down to the simple fact that no one knows what causes ME.  If you talk to 50 different doctors or ME sufferers, you will get 50 different opinions about what the cause is, an what treatments might help.  It seems I have tried nearly everything at this point, although I’m sure that if I did a little more digging I could learn about rarer, more exotic and expensive non-Western things to try.

In all the reading I’ve done, and in listening to my own body and seeing how it behaves and responds (or, often, doesn’t respond) to things, I’ve come to believe that ME is ultimately a neurological disease.  There are several articles which come to mind that support this idea, but one of the things that really helped convince me was the documentary Voices From The Shadows.  I will warn you, it is not a cheery piece.  You may find watching it quite upsetting, especially if one of your loved ones has ME.  But they talk quite a bit about the autopsies done of people who died of ME, and every single one of the showed brain abnormalities.  Inflammation of the central nervous system if I’m remembering right, but don’t quote me on that.  But it just seems to make sense that this really all starts somewhere in the brain from what I see in my body.

Because I believe ME is essentially a brain malfunction, I’ve been wanting to see a neurologist for quite a while, but without any more blatantly neurologic symptoms to convince my insurance, they wouldn’t approve a visits.  But for better or worse, I’ve been tripping a lot lately.  The first couple times you can write it off as just being clumsy or not paying attention, but then it started increasing.  As the tripping increased, I also began to feel more disoriented while I was driving; mostly over longer distances and on the freeway… it just felt like everything was hurtling at me so fast I was having trouble processing it all, which was a bit alarming.  Armed with those new symptoms, my insurance finally agreed to let me see a neurologist.

The first neurologist I was sent to refused to see me for very suspicious reasons that really, truly seemed to be based solely on me having ME.  Well, I wouldn’t be the first ME patient to be discriminated against, and if the doctor was going to be such an asshole about it, I’m glad I didn’t even have to have an appointment with him.  The second one I was sent to was very different.  I loved him.  He not only believes in ME’s mere existence, but also believes that it is a physical and neurological disease.

But, as he told me in the kindest and most caring way, there was absolutely nothing he could do for me.  The only way he knows how to do any fighting against the disease is simply treating the symptoms, which he admits is woefully inadequate.  He did a neuro exam on me just to be 100% sure I don’t have MS, or a brain tumor, or anything else they might be able to actually treat, but I passed all the tests beautifully.  He made an interesting argument suggesting that fibromyalgia and ME are essentially the same thing, which was a new thought for me, and raised other interesting points and questions also.

His theory about what causes fibro and ME is that, essentially, our brains let in more stimulus than they ought to, and the amplify it even more.  Which would explain the completely disproportionate pain we feel, our sensitivity to light and noise and smell, and plain old visual stimulation.  Every time I go to the grocery store, I have to steel myself beforehand, because I know all the lights and people and noise and navigating through it all is going to suck.  Unless someone comes up with a more sound theory, I’m going to stick with this one.

The appointment was informative, the doctor was so caring and kind; he went out of his way to answer questions and took a lot of time with us.  He talked a lot about the problems fibro and ME people face with the medical community and public disbelieving us often.  It was a very valuable appoinment just for the sheer validation from the doctor.

But, oh, I had not realized how much I was hoping he would be able to help me until I knew he couldn’t.

I don’t think there are any other specialists left to see.  He was the last one on the list of anyone who even might have something to offer me.  He was also the one I was holding out the most hope for.  It felt like I’d finally reached the Wizard of Oz, and there was nothing in his black bag for me.  Truthfully, it was heartbreaking.

For most of this health journey, I’ve felt that I’ve been mostly on my own; that it’s up to me to find a cure for myself, and I feel that more than ever now.  The neurologist suggested that the medical community might have answers, and perhaps cures (or at least better treatments) within my lifetime, but that is a cold comfort right now.

This disease wears on you.  Bearing it for a day is something anyone could do; it’s the relentless suffering with no relief that breaks you.  Having only the vaguest, most nebulous hopes for it ever changing is a bitter, bitter pill.  The last few days have been very depressing.

I have not given up.  I will not give up.  But having what seemed like the best chance of change and improvement disappoint so will require some time to bounce back from.  For the time being, I need to metaphorically retreat and let my wounds heal before I can start battling again.  I need time to shed some tears and allow myself to grieve the lost hope.

And whenever I write posts like this, I always want to say that I know it can be worse.  I do not think that the things in my life are the worst things that have happened in anyone’s life ever.  I know that.  But I also know that other peoples’ pain and suffering doesn’t invalidate mine, and refusing to acknowledge them for being as painful as they are will do me no good.  You can’t heal from something you deny.

So thank you all for listening to me, and special thanks to those who have been sending well wishes and prayers.  Extra thanks to my friends and family for listening to me so patiently and lovingly.  This too will pass.  It will take time, and it may suck for a while, but it will pass.

They Lived To See The Dawn - This photo feels appropriate for this post; a girl and her dog who have made it through some very dark times, but made it out ok.

They Lived To See The Dawn – This photo feels appropriate for this post; a girl and her dog who have made it through some very dark times, but made it out ok.

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