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Posts Tagged ‘treatment’

What Else Can I Say About ME?

Here we are at May 12th again.  Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well.  Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be.  The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.

What else can I say about ME?  About all the other forgotten, ignored diseases swept under the rug of modern medicine?  Illnesses which embarrass our doctors with their constant reminder that we remain unhealed.  Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight.  Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.

I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years.  How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion.  How it has progressively gotten worse each year.  How the government would like to pretend we invisibly ill don’t exist.  How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives.  You have heard me spout the facts and statistics.  You’ve heard me talk about my personal story and fight with ME.  What else can I say?

I can say this: I am not beaten.  I have not given up.

I am determined to get better.  I am committing myself to be well, even if I have it about through sheer mental will.  I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year.  I am not accepting a future of the living death that is ME.

I don’t know exactly how I will get better, but I am going to.  As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago.  “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time.  “Art, photography, life and how those are really all the same thing,” is much more appropriate now.  My identity is not Sarah-who-has-ME.  I am just Sarah.

As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality.  I have strongly felt how focusing on fighting ME has been feeding it.  So now, I will ignore it as much as possible.  I do not mean that I will forget my body’s current limits, or not honor them.  Listening to my body and what it’s able to do is vital for my current and future wellbeing.  But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing.  This is the path I will pursue.

This also does not mean that I will not advocate for ME sufferers.  I still feel very strongly that the only way we will bring about change is by demanding it.  And we can only demand it if we know that it exists in the first place.  But I can also advocate without allowing ME to rule every part of my soul.

As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME.  I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help.  Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done!  Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME.  With that, please let me present my latest image to you, Living With The Tombstones.

Living With The Tombstones

Living With The Tombstones – © Sarah Allegra. Model: Katie Johnson. An image to help raise awareness about ME/CFS and other “invisible illnesses.”

I probably don’t have to explain the symbolism behind shooting this image in a graveyard.  ME (and many other invisible illnesses) truly can be a living, nightmarish death.  Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy.  You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you?  If you do, I am not there yet.

I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress.  And the mirrored mask felt like the perfect touch.  When people look at us, they rarely see us; they see their projections of who we are.  Often what they see says far more about them than us.  Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me.  They don’t see the toll that those short, simple trips take on me.  They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days.  How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend.  They don’t see the weight of my illness on Geoff and my family.  How if I see friends, they always have to come to me.  I so often feel like a dead-weight wife, daughter and friend.  The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry.  How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in.  They just see a fairly normal-looking girl.

I can’t blame other people for not knowing that I’m sick.  I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy.  But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about.  That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses.  That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.

We can get there.  We will.  One May 12th at a time.

Want to do more?  I can help you with that!

I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years.  Especially Geoff, who I’d only been dating for a month when I became ill.  Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get.  And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post.  Your kind words and love and support are greatly appreciated, now and always! ❤

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I actually shot the images for this self portrait back in 2012 sometime, as I recall, and it just kept getting pushed down on my list of photos to edit.  I generally prioritize images which have other people modeling in them, since they took the time and energy to come model for me, so sometimes my self portraits get a little forgotten.  This was one which I definitely did not want to let get completely forgotten though, so as soon as I had the time, I eagerly jumped into editing it!

I don’t think many of you will be surprised when I say I’ve had my share of troubles with clinical depression.  Even as a teenager, the seeds were being sewn.  It’s something I’ve struggled with on and off for most of my life.  I’ve been to many therapists, tried countless treatments, medications, alternative therapies, read books, talked it out, journaled, and, of course, done art therapy.  Art therapy and submerging myself in nature, with animals and my friends and loved ones are the things that seem to work best for me, but everyone is different.  I have mostly accepted that it will probably be with me to some degree for most of my life, which is an easier future for me to face than one where I’m constantly disappointed by finding myself under its shadow again.

***Side note: ME/CFS/fibro are often tried to dismiss as simply depression or other mental health problems.  They are absolutely NOT the same thing.  I have experienced both and they are completely different.  Where it gets tricky is that people with ME/CFS and fibro often develop depression secondarily to their physical illness, but it’s usually because they feel terrible every day, many people refuse to believe they’re actually sick and they suddenly lose huge, important parts of their life to their illness.  I challenge anyone to not become depressed in those conditions.  What drives me crazy is that no one suggests that patients with cancer, for example, who develop secondary depression are “simply” mentally ill, but it’s an extremely common conclusion for doctors to jump to regarding ME/CFS and fibro patients.  I’ve had doctors tell me the problems were all in my head.

None of this is to say that mental health problems are somehow less important or real than physical health problems, they are simply two distinct things and require completely different treatments.  The simplest explanation I’ve come across to illustrate the differences between the two is this: ask a person with depression what she would want to do the next day if she woke up feeling completely well.  She’d probably have trouble answering you.  Depression robs you of all joy and motivation.  Ask someone with ME/CFS or fibro the same question and they’d give you an entire list of things they’d like to do.  ME robs your body of the ability to do things, but doesn’t take away the desire to do them.***

Since the severity of my depression waxes and wanes, I tend to think of it as an entity which I am periodically under the attack of.  Sometimes I imagine it as a malevolent cloud, sometimes a huge dragon; something which is dark and dangerous and can completely envelop me.  When I find myself thus enveloped, I repeat a mantra over and over to myself; “The clouds will lift.  The clouds will lift.”  It might be hours, days, weeks or months, but I know that at some point this battle will be over and I’ll have made it through to the other side.

I’ve written about him before, but Andrew Soloman’s incredible Ted Talk on depression bears repeating.  It’s beautifully insightful, hopeful, even when I’m under the darkest cloud and most importantly, lets me know I’m not alone in how I feel.  It’s also supremely excellent at explaining clinical depression to those who have never experienced it firsthand; an invaluable gift.  As Mr. Soloman states, “half the purpose of art is to describe [depression.]”  I could not agree more.

I don’t know whether we’re friends because we all share the same demons, or if I just happen to have a large percentage of good friends who have their own mental health struggles, but I wanted to create this image to show not just my battle, but theirs… and indeed, the battle everyone with depression finds themselves flung into.

When you’re in the throws of it, you don’t feel strong or brave, but I know that we are.  We bear terrible burdens which can break the human soul and every time we don’t succumb to it, we should celebrate.  But mental health is still greatly stigmatized in our culture, so there is rarely any celebration; there is rarely any acknowledgement of the battle that rages at all.  I feel it’s important and part of my job as an artist to discuss these issues which we would like to pretend don’t exist.  If we deny depression, then we will lose the battle.  The only way you can fight it is by first saying that yes, it exists; yes, I am under its cloud; no, that does not me a less worthy person; yes, I am brave and strong even though I don’t feel like it right now.

So this image is dedicated to all my dear friends who have been under that same cloud.  To my friends who have not experienced the cloud themselves, but support us when we’re in the throws of it.  Who love us, accept us and keep us going.  Shame and secrecy feeds the depression monster.  Truth and soul baring disarm it, love and strength defeats it.   Many, many thanks to my dear friends and loved ones who help me through these battles.  I just hope I can do the same for them.

Let’s take a step toward making the world a better place.  Let’s finally let the stigma around mental illness die.  No one would ever, ever choose to be like this.  We fight unimaginable battles to overcome it.  Instead of shaming those covered in battle scars, let’s celebrate their success.  They made it through.  There may be more fights, but they will make it through them too.  They will if we start supporting them instead of shaming them.

To everyone who knows this malevolent cloud firsthand, you are beautiful and strong.  And the clouds will lift.

The Clouds Will Lift

The Clouds Will Lift

The Clouds Will Lift - detail

The Clouds Will Lift – detail

The Clouds Will Lift - detail

The Clouds Will Lift – detail – I made custom bat wing brushes to construct the clouds

The Clouds Will Lift - detail

The Clouds Will Lift – detail

If anyone would like to share stories of their own mental health struggles, please share it in a comment!  Talking openly about these problems is the first step to erasing the stigma.

*****

Just a few more days!!

For the month of May, I am donating 50 percent of profits from all my sales to The Microbe Discovery Project, a group working to solve the mystery of ME and find a cure for those afflicted.  And what do I sell?  Well, what do you want?  Because my images come from the frameable to the wearable and in every price range.
museum-quality, fine art prints
iPad/iPhone/iPod covers
stickers
blank greeting cards
post cards
shirts and hoodies
wearable art
throw pillows
INTROSPECTIVE: my eight-week, on-line, course of self-discovery through photography.

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