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Posts Tagged ‘ghost’

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’ve talked to you guys about Rectify beforeRectify, Sundance Channel’s dreamy, introspective show about Daniel Holden who  was convicted of a crime when he was 18 and spent the last 19 years on death row.  New DNA evidence has emerged which frees him from prison, but he is not exonerated.  He is sent back into the lion’s den of Paulie, Georgia, a fictional small town where everyone has been steeped in this crime for the past two decades and everyone has an opinion on Daniel’s guilt or innocence.

Image copyright of Sundance Channel.

Image copyright of Sundance Channel.

It is an absolutely brilliant show.  I’ve met a lot of other fans online and they are truly some of the most rabid, enthusiastic people you could imagine.  Much of this is due to how original Rectify is.  It moves at its own pace, intentionally slower and more deliberate than most current shows.  It gives its characters time to breathe and allow us to learn much about them in moments which would be smaller in another show; Daniel’s magical wonder at watching and feeling the feathers from his pillow after having not seen or felt a single one in 19 years.  The writing is incredible and uses silence just as loudly and profoundly as the most eloquently-written speech.  The characters are all given fair treatment; there are no black and white “good guys” and “bad guys.”  They are all just people trying to do their best.

And the casting… my god, there are no words.  It is just perfect.  Perfect in every single way.  There are no weak links anywhere.  From the leading roles, Daniel’s family, to what could be considered “small” parts – Chet, the bookstore owner, played by Brian Bremer, or Marcy, the waitress, played by Kim Wall; every single one is a real person and the talent of the actors makes them big.  You wish you could invite these people over for dinner.  Much praise has been heaped upon the lead actors, and every bit of it is well deserved, but even the people you only get glimpses of are perfect.  Bruce McKinnon, playing Daniel’s step-father Ted Sr. reminds me so much of my late grandfather, I wish I could hug him.  Kerwin, played by Johnny Ray Gill, will change your life.  I don’t have enough space here to list every actor and describe how wonderful they are; you’ll have to just watch it for yourself.

Image copyright of Sundance Channel.

Image copyright of Sundance Channel.

Another thing I adore about Rectify is the heavy use of symbolism, metaphor and philosophy.  I talked about this more in my first post about Rectify, so I’ll just touch on the broad strokes.  The first season is six episodes long, with each episode covering one day.  This brings to mind the seven days of creation in the Bible and how God created man on the sixth day.  The mysterious Goat Man… is he representing God wrestling with Jacob or Satan tempting Jesus in the desert?  Or both?  Guilt and innocence, sin and salvation are recurring themes.  As you watch, you pick up more and more tidbits of metaphor, making the story that much richer.

It is a genuinely original and remarkable show, especially compared to everything else on TV right now.  I consider myself a Rectify pusher, as almost everyone I know personally who is a fan of the show started watching it because I insisted they give it a try.  And I will recommend the same thing to you 🙂  Season one is streaming on Netflix.  Season two, given a whole 10 episodes, just finished, but I imagine it will find its way to Netflix soon.  Rectify’s thoughtful pace is seriously ramped up at the end of episode five… I usually recommend to people that they only watch episode five when they can go straight ahead to six, because you will be dying to.

Jayson Warner Smith as Wendall in Rectify. Image copyright of Sundance Channel.

Most of the Rectify cast can be found on Twitter and they have all proven to be extremely friendly and happy to interact with fans (time permitting, of course; they still have lives).  I’ve given them all a standing invitation to come join DreamWorld any time they’d like, which may happen soon to my delight!  Over the course of chatting with some of the lovely actors from the show, I got to know Jayson Warner Smith a bit, who plays Wendall; Daniel’s creepy, sinister neighboring inmate.  At first I was almost afraid to talk to him because Wendall is so… well, Wendall.  But Jayson is just an absolutely lovely person who is nothing like Wendall.  He is an actor, after all 🙂  Here’s a great video highlighting some of Wendall’s best/worst moments from season one.  You’ll also see Daniel Holden, played by Aden Young, and Kerwin Whitman, played by Johnny Ray Gill.

I asked Jayson if he would mind doing an interview for my blog and he was kind enough to say yes and take time out of his schedule to answer my questions!  Jayson is currently living in Atlanta though he lived in Hollywood for two years.  He’s also well-versed in both stage and screen acting, though I haven’t had the chance to watch him perform live yet!  Read on for the interview, then I’ll tell you about my latest image which was Rectify-inspired.

 

*****

 

1. Do you have a favorite role that you’ve played?

Bobby Gould in Speed the Plow on stage in ATL. Love the Mamet language. Oh and Jack in The Weir also on stage in ATL.

2. I was impressed to find out you’re a musician as well as an actor!  Do you have any part in writing the songs?

I wrote the two on my site. Those were recorded with an iPhone at a party. Turned out pretty well. I seem to work best with a deadline it seems. I had to have them done in a month for this party.

3. If a horrible world existed where you could only practice music or acting, assuming they paid the same, which would you pick?

Ha. They both do pay the same right now.

Acting. I’m not disciplined enough to be a musician.

4. What would your dream acting role be?  It can be anything, including parts from movies which already exist.

That depends on so many things. The best experience would be working with super talented collaborative people. To have a role in that setting that the audience completely empathizes with.

Also, Elwood P Dowd in Harvey.

5. Do you have a favorite way to get into character, or does it vary from role to role?

That’s a novel. Sorry.

6. What is one thing you’d like your fans to know about you?

I’m just a regular guy. And I love F1. Go McLaren!

7. What music do you find yourself listening to frequently, and what shows are you sure to never miss?

Pandora has become my soundtrack. It rotates from Lyle Lovett to Rufus Wainright to The Shins to Blitzen Trapper to Radiohead to Avett Brothers to Sigur Ros etc.

TV? Mad Men, Top Gear (UK), Cosmos, Halt and Catch Fire, Downton, Justified.

8. I thought it was great that you participated in the ALS Ice Bucket Challenge (and you were so smart in how you performed it!)  Are there any causes you’re passionate about?

Just the Boy Scouts. I am an Eagle Scout and it made me a better person. It’s a shame that all of this political mess has gotten involved lately. Their organization has been trying to please everyone and as a result the whole program is becoming useless. It’s a real shame.

As Bill Cosby is quoted as saying: “I don’t know the key to success but I do know the key to failure – Trying to please everyone.”

9. Does playing Wendall in Rectify leave a film on your soul or are you able to shake him off quickly once the scene is done?

It’s just acting.

10. What do you like best about living in Atlanta that you wouldn’t have living in Los Angeles?

A house.

Hah- absolutely to answer #10!  Thank you, Jayson, so much for taking the time to do this!  It was a pleasure!  Now if we can just get you out to LA just for a little while… 🙂

Now, on to the photo!

Waiting For Paulie

Waiting For Paulie

The title is a play on the name of the town the show takes place in.  I created this just after season two ended – and ended on a very bad cliffhanger too!  Thankfully, season three has been secured or I just would not have known what to do.

I’d been eagerly counting the days for the second season to start and was enthralled with every new episode.  I’ve watched season one probably a dozen times already (I have it on DVD.  I’d also like to state for the record that I watched the entire season in one day; I REALLY love the show).  Season two, with more episodes, was able to expand upon the groundwork laid in season one, but as the show tends to do, it left us with more questions than answers.  I think I held my breath for the entire last half of the finale, which was a magnificent climax to the season.  After watching it though, I felt so sad that this season was over.  I wouldn’t see anything new from these characters for another year.  And they feel like friends to me, not fictional characters; I truly care about them.

After moping around for most of the morning after the finale, I finally decided to channel my impatience into a self portrait, because that’s what I do.  I set out intending just to use the window and have a couple feathers drifting down, reminiscent of Daniel’s experience with his feathers.  But as I worked, nature kept insisting on making herself known in the image.  Before I knew it, ghostly birds were flying everywhere while vines and smoke crept up from the corners.  I didn’t over-think it as I was creating, but as I thought about it afterward, it felt very true to the show.   Life and death.  Dark and light.  Magical moments between the mundane.  Nature and hope triumphing.  Light illuminating the shadows.  It summed up a lot of my feelings for the show in a way I still can’t really put into words.

There are some detail shots below, but if you only take away one message from this post, take this: go watch Rectify right now.  You will not be sorry 🙂

Waiting For Paulie - detail

Waiting For Paulie – detail

 

Waiting For Paulie - detail

Waiting For Paulie – detail

 

Waiting For Paulie - detail

Waiting For Paulie – detail

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