Preparing For Battle

Let me start by saying that I’m sorry I can’t give you more actual details about what’s going on, but I’ve been advised to continue to keep them under wraps.  Those of you who follow me on social media have already heard that I’m going through a difficult time right now.  What I can tell you is that I am about to do something on the 14th which is absolutely terrifying to me and has incredible, life-altering implications.  For me, Geoff and the fur-kids.  And while I have lots of people (like all you dear, lovely folks reading this) who are loving and supporting me, it’s all going to come down to the words I speak and actions I take on the 14th.  I will be alone at the critical moment; the pressure feels crushing.

I feel like Louis Zamperini in the POW camp holding his wooden beam.  I feel like Aerin facing the giant dragon Mar.  I feel like the unicorn standing up to the Red Bull.  I feel like one of Leonidas’ 300.  Frodo off to Mordor.  Rosie and Pernicia.  Lissar and her father.  You get the idea.

One small, anxious girl going up against something far, far bigger than she is; ill-equipped for the job.  The higher the pressure, the more my brain feels scattered and forgets important details.  And it’s crucial that I remember everything, no notes allowed.  The outcome of this will have a huge impact on my financial state, which is currently pitiful.  I need this win.

To say this has been stressful would be a huge understatement.  This sincerely feels like one of the single hardest, most frightening thing I have ever had to do.  But there’s no getting around it, I HAVE to do it.  And I will do my best.

The stress is causing giant waves of discord through my body, mind and soul; causing mayhem and destruction.  For weeks now, every night, I either have stress dreams or I dream that I’m dying… the dying ones are the worst because, in my dream, it’s wonderful, beautiful, the most peaceful, joyful thing I’ve ever experienced.  And then I wake up and remember real life and it feels like a glorious gift has been snatched from my hands while the weight of life crushes down upon me again.

Despite numerous antacids of all kinds, I’m having persistent heartburn, often in the middle of the night.  My pain levels are all elevated.  And as you can imagine, my sleep is suffering in quantity and quality.

I’m not writing about this to simply throw myself a pity party.  I am asking for your support.  If you pray, please pray for a quick and overwhelmingly successful outcome.  If you do Reiki, please send as much as you can.  If you light candles, please light one for me.  Please send all the love, good thoughts and energy that you can spare, whatever your system of faith may or may not be.  I will gladly take it all!

I am determined to win this battle.  And while it traditionally takes a while to hear about the exact outcome from the fight, I am equally determined to get an overwhelmingly positive answer, right then and there.  I am visualizing myself being victorious.  As much as I am afraid, I am doing my best to catch myself when I start to go into a spiral of worry over what will happen if I fail.  When I notice those thoughts, I actively change my vision of the future to one that I want.  I don’t need to open myself up to attracting any negative energy!

One thing about all the metaphors I listed a few paragraphs ago; despite the odds, they all succeeded.  Thinking about others who have overcome incredible trials is deeply comforting to me.  If they could do it, I can do it too.

I can say one thing: this is not about a new turn in my health or anything else along those lines.  My health is fairly crappy right now, as is usual, but I have not taken a turn for the worse…  other than the spiked pain, non-stop migraines, constant tension in my whole body, wildly increased anxiety, panic attacks and depression as well as extreme exhaustion brought about by all of this.  It’s stressful to the point where I don’t even want to edit or create many days, which is an almost unheard-of low for me.  But these are clearly responses to the weeks and weeks of stress and worry.  I don’t want you guys to worry that I’m hiding some terrible new diagnosis from you.

I know I will get through this.  And I know that with Geoff, I will deal with the outcome, whatever it is.  But more than that, I know I will win.  I have to.  Knowing that doesn’t take all my fear and anxiety away, but it does give me hope to cling to.

I feel incredibly fragile in every way, but I will battle and I will be victorious.  Still, your prayers, well wishes and love would mean a great deal to me right now.  I can use all the help I can get.

I promise that I will try and let you guys know exactly what’s happening just as soon as I can.  I appreciate that you’re all being very understanding about that and respecting the fact that I simply can’t divulge much right now.

This self portrait felt especially appropriate for this post.  It serves as a reminder and inspiration to me to keep fighting, to get up when I’m knocked down, and most of all, never give up.  Thank you all so very, very much for all your support!  I cannot thank you enough.

With that said, please wish me a miraculous victory as I go into this battle.  Now, let me go find my suit of armor.

We Rise Again – © Sarah Allegra

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Singed Wings: The Granite Mountain Hotshots Tribute

“A wall of flames 40 feet high was sweeping its way up the canyon, 400 yards away. At that point, they would have had about a minute. Since they couldn’t get to the safety zone, they had to make one of their own. Andrew Ashcraft and Travis Turbyfill, the two sawyers, started attacking the brush with their chain saws, while the rest of the guys swung their Pulaskis, frantically doing what they were trained to do: move dirt, and move dirt faster.  They dumped fuel from their drip cans around the zone they’d created, then set the chain saws at the outer perimeter, so that when they exploded no one would get hurt.

[The team’s leader,] Eric, got on the radio. The Hotshots’ escape route had been cut off, he said, and they were deploying their emergency shelters.

Eric’s voice was calm – some said the calmest they’d ever heard him. At 4:47, he radioed his last transmission: ‘Deploying.’ And then, just like they’d practiced, the Granite Mountain Hotshots climbed into their shelters.

Finally, at 6:30 – an agonizing 103 minutes later – the helicopter was able to get on the ground. The onboard medic hurried to the site where they’d seen the shelters. As he approached, he spotted the metal blade from a chain saw and a pickax with the handle burned away. The ranch house was unscathed. Everything else was a smoldering moonscape.

Experts estimate that the fire burned between 3,000 and 5,000 degrees. In the end, there wasn’t much left. But what there was told a story.

The 19 Hotshots were all together. No one panicked, no one ran. Travis Turbyfill and Andrew Ashcraft, the sawyers, were at the edge of the group, closest to the flames. They were cutting lines up until the end.

When Juliann [ed – Andrew’s wife] got Andrew’s effects back, his boots and clothes were gone. His metal belt buckle didn’t make it. His pocketknife. The journals that he kept. There was a piece of Velcro from his watchband but not the watch itself. Even the metal plate and eight screws in his leg, from when he shattered it in a rappelling accident a few years back, had disappeared.

Two things, she discovered, had somehow survived the fire. One was Andrew’s wedding ring, titanium. The other, shrunken and black, was the rubber wristband that said: be better.”

–Excerpt from an excellent and comprehensive article The Last Battle of the Granite Mountain Hotshots, by Josh Eells, for Men’s Journal.

 

Singed Wings – detail

I initially created today’s image to be a companion piece for this photo of Katie and I, honoring the fallen firemen in Yarnell, Arizona almost a year ago.

To The Lost

A childhood friend of mine, Andrew Ashcraft, had been one of the lost.  As I do with most painful things, I channeled my grief into my art.

Though it always makes me cry to think about it, there is such beauty in the men’s calm acceptance of their sacrifice, their solidarity, that they were a complete, solid unit until the very end. Josh Eell’s article says it so wonderfully.  They stuck together.  In the face of immediate, certain death, they did what they could and then turned to each other for comfort.  Shoulder to shoulder, they stuck together until the horrific last.

That unity, that love, that solidarity and bravery touched me more deeply than I could, or can, express.  The only chance I had at touching on it was through art.  I set up a shoot with Katie and Bryce to portray the doomed but brave men.  It happened that some tree branches and very tall bushes in my yard had just been cut down, forming what appeared to be a huge, natural nest.  Thinking of the Hotshots as birds with broken, burned wings helped me find the metaphor I wanted to use, a way into the truth I was trying to get at.

It was an easy shoot, what with all the branches having been set up for me by the workmen.  I lit a few smoke bombs, snapped the frames and it was done.  I loved what I had gotten from this shoot as I looked at the images later.  All the same, I found I couldn’t face editing the image.  It took many, many months before I felt like I could emotionally handle editing working it up.

I didn’t consciously realize we were coming up on the anniversary of their deaths, but I must have felt it subconsciously.  I’ve been haunted by memories of Andrew recently and finally felt that it was time, urgently time, to finish this piece.  As I finally brought the files into Photoshop and started working on them, more memories flooded my brain.  Like how Andrew, as a young child, had always said “Jee Jie Joes” instead of “GI Joes” and frequently got tripped up between “brought” and “brung.”  The trip our families took to Mount Shasta together.  Their shelties, who seem huge in my mind, but who I know were actually smallish dogs.  Drawing together, playing in the sprinklers, going to the beach, sharing snacks, going to the park, getting into fights, crying and making up again… all the things children do.

I’ve said before that one of the things I mourn in this is that I missed out on getting to know Andrew as an adult.  I’ve tried to remember that lesson and have made a point to stay in touch, or get back in touch, with people in my life.  I won’t get another chance at Andrew, but I can try and apply the lesson to other friendships.

None of these men deserved their fate.  They were true heroes, actively running into the worst, most dangerous situations.  That is what the Hotshots were there for; an elite team of firefighters comparable to Navy Seals or Spartans.  The only thing I can try and do about it is make an attempt to honor them and their sacrifice.  I know that I will always fall short in this goal, but it’s important to try nonetheless.  I am also keenly aware that this is not about me or my pain.  The pain of Andrew’s family and loved ones is something I can only imagine.

The Hotshots were trapped; birds unable to fly away.  There was no escape from the flames.  But what remained was love. Love triumphing over the flames by preserving Andrew’s wedding ring and bracelet with his personal motto.  Love for the people they were protecting, though they would never meet them.  Love for their families, though they left them behind in the line of their duty.  Love for each other.  Love for humanity.  Just love.

That love is what I wanted most to capture in this image and I hope it shines through.

Singed Wings

Singed Wings – detail

Singed Wings – detail
One of the three smokey roses scattered through the photo. I used a photo I had taken of beautifully carved roses on a tombstone, which felt so fitting. The delicacy and beauty they add are still tinged with sorrow.

Singed Wings – detail

Singed Wings – detail

My heart goes out to the family and friends of all 19 fallen heroes especially as we approach the anniversary of this tragedy.  I’m sure it’s an extremely difficult time for all of them.

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The Huge, Glass Mountain

***Want to win a free print of my latest image, The Blue Ribbon?  Read on to find out how you can enter!!***

ME Awareness Week continues!  Catch up on the story with the first, second and third posts!

Spoon Theory – a self portrait

For anyone not convinced of the seriousness of ME, let me present you with a quote from Dr. Nancy G. Klimas in a Q & A article from The New York Times on Chronic Fatigue Syndrome.  Dr. Klimas serves on the board of directors for The International Association for Chronic Fatigue Syndrome and treats both CFS patients as well as patients with HIV and AIDS.  In 2009, she made a comment comparing CFS to HIV and AIDS.  A reader expressed anger over her comment, calling it alarmist and saying it was making CFS sound like a much more deadly disease than it is.  Dr. Kilmas had this to say [emphasis mine]:

“…But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

In Between Awake And Asleep – a self portrait

This is the point in my explanations where I like to remind people (and myself) that I am lucky; I am on the mild-to-moderate end of the ME illness spectrum.  It can get much, much worse.  There are thousands of people afflicted with severe ME, on constant morphine drips, in agonizing pain, earplugs in every second of the day, unable to tolerate the slightest light or sound, unable to feed or dress themselves or even use the bathroom on their own.  People die from ME.  That is why it is so very, very dangerous when the medical community trivializes our disease, insists it’s psychosomatic, insists there’s nothing physically wrong with us.  YES.  Yes, there is, doctors.  Those who have died from ME, and there are many, many examples, frequently show the same inflamed areas in the brain when autopsied.  While I’m not sure I’m ready to say ME is purely a neurological disease, it sure seems to be a big piece of the puzzle.

When the medical community has nothing to offer you, you become your own doctor, your own detective and your own science experiment.  You try anything and everything that might help; medications, physical therapy, diet changes, supplements, “Eastern” medicine, energy healing, modifying your sleep habits, psychotherapy; anything.  One year when I was still able to work a part-time job, I spent over a quarter of my pitiful earnings on doctor copays, medications, supplements and treatments.  That amount hasn’t changed much since then.

While there have been some setbacks recently for the ME community, there has also been forward momentum.  I know of at least two ME documentaries currently in production.  I had the chance to work with one of the films, Canary In A Coal Mine, and get involved with when it was raising funds through Kickstarter by donating the printing rights to some of my ME-themed images for them to use as backer rewards.  Everyone was shocked and delighted when the Canary film more than quadrupled its initial goal in its 30-day campaign!  I take this overwhelming support as a sign that our voices are finally starting to be heard, and that, perhaps, this indicates the winds are finally starting to change.

The Fragile Blossom That Opens In The Snow – a self portrait. “Courage is not the towering oak that sees storms come and go; it is the fragile blossom that opens in the snow.”
– Alice M. Swaim

I never write posts about subjects like this with the intent to garner pity or complain.  That is never my intention.  What I want is to bring awareness to this extremely misunderstood, unappreciated and devastating disease by speaking frankly and candidly about it.  We are suffering and dying and there are few people who know about it and even fewer who are doing anything about it.  The squeaky wheel does get the oil.  Enough noise needs to be made and enough public outrage needs to be expressed over how the medical community (as a group; there are certainly exceptions and wonderful doctors working alongside us) is ignoring us and indeed doing harm.

It can feel daunting to attack such a huge, glass mountain.  It does not matter that you are only one person and that I am only one person.  Gandhi, Nelson Mandela and Martin Luther King Jr. were each just one person.

I genuinely believe this is a problem science could solve if enough effort was made to solve it.  At the very, very least we could find treatments to alleviate the symptoms.  We have tackled other serious diseases.  But we need the funds and we need the public to demand action.  And we need a name that isn’t dismissive and demeaning.  So this last part goes to the CDC:

Hey, CDC, change our fucking name already.

Exoskeletonation – a self portrait

To do my part in raising awareness about ME, 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

Also, in honor of this day of raising awareness, I’m holding a contest to win a beautiful, 10″ x 15″, museum-quality print of my latest image, The Blue Ribbon; an underwater representation of the struggle that living with ME can be.  Your print will come on beautiful, shimmering, pearlized, archival paper.  And all you have to do is tweet!

The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!

Ready to tweet?  Use any of the following!

Curing baldness gets 4x more funding than ME/CFS, but no one ever died of baldness http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

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ME/CFS knows no social or economic boundaries; it affects all equally w/out mercy. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

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ME/CFS in not in our heads & cannot be cured with exercise & a better attitude. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

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ME/CFS is not a “female” disease; 20% of sufferers are male. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

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ME/CFS isn’t just about being “tired,” it ravages every single part of the body. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

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ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

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More exercise and a better attitude will not cure ME/CFS. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

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We’re not chronically fatigued, @CDCgov. We have myalgic encephalomyelitis. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

Tweeting multiple statements will count as extra entries, so enter as many times as you like.  However, tweeting the same statement multiple times will not count.  And that will probably just annoy the people reading your feed, so don’t do it. 😉  I will choose a random winner from all entries on May 20th and announce the winner here!

Catch up on the story with the first, second and third posts this week about ME.

Thank you to everyone for reading and participating!  If you have had your own experiences with ME, CFS, fibro or any other chronic illness and you’d like to share your story, please leave it in a comment!

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