My Top 5 Silver Linings Of Chronic Illness

During the five years of being chronically ill to the point of having to change my life to revolve around my illness, I have tried to keep my spirits up.  I’ll readily admit I’m naturally more of an Eeyore, but I also know that having a positive outlook can have a huge impact on one’s quality of life.  So I try to train my brain to be on the lookout for silver linings; for the beautiful amidst the ugly.

Of course, I can’t speak for everyone with ME, everyone with fibro, or everyone with other chronic illnesses.  These are just the shiniest of the silver linings that I have discovered personally.  Yes, there is a lot of bad along with this good, but that’s a subject for another time.  For now, I want to highlight the positives.

 

1. You Become More In Tune With Your Body

I, for example, have learned that I am quite sensitive to nearly all medications, even more than my small frame would account for.  There is a certain cold feeling I get in my stomach which is the warning for a bout of coldsweats and vomiting coming.  While I used to drink lots of caffeine and couldn’t get through an afternoon without some kind of energy dose, I now drink black tea in the morning, and rarely anything beyond that.  My body felt noticeably cleaner and fresher after I made the switch, and again when I became vegetarian.  You learn to listen harder to the signals your body gives you and take them more seriously.

Vanity’s Murder

 

2. You Learn Who The True Friends In Your Life Are

After the fifth time in a row of my having to reschedule an outing due to the unpredictable whims of my body, most people would stop trying to make the outing happen.  I have been extremely fortunate to have wonderful people in my life who are as understanding about my forced flakiness as anyone who doesn’t have a chronic illness could be.   They know by now that evening events, large crowds and physical exertion are especially hard for me, but they continue to invite me to dinners and parties, always letting me know that it’s ok if I’m not up to it.  I love them for continuing to invite me, even when I have to say no 90% of the time, but even more for not holding it against me.

To The Lost

 

3. You Come To Terms With Your Mortality

Everybody dies.  That is an unavoidable fact.  I’ve found that I, along with many of my chronically ill peers, have given our lifespans much greater thought than our healthy counterparts.  Whether our disease is something known to shorten your lifespan or whether it’s a roll of the dice, we are generally able to come to peace with the knowledge we won’t be around forever much earlier in our lives than is typical.  This can even lead to what I call The Walter White Effect, which essentially says that when you have faced the fact that your life may not be as long as you had once believed, you are motivated into working much harder in the present.  It’s true, any of us could go at any time in an untold number of ways.  But there seems to be a quieter acceptance of this inevitable fate when you’ve had your body occupied with chronic illness for a long time.

All Hail The Queen

 

4. You Life Distills Into The Most Important Components

I have days when there are only a couple hours (often scattered through the whole day) when I can actually get anything done.  Usually I’m able to get a little bit more done than that, and it helps that much of what I do can be done laying in bed with my laptop, but if you only had three or four hours to accomplish anything, what would you use that time for?  Lunch with friends?  Taking care of your pets?  Showering?  Taking photos?  Making love?  While chronic illness robs you of so much time, it also forces you to look long and hard at each of the things you do choose to engage in.  I won’t, for example, spend time editing photos which I’m less than satisfied with.  Which activities you choose to keep can say a lot about what’s truly important to you.

Beloved Of The Crown

 

5. You Look At The Big Questions

Can you believe in a god who would allow you to live your life so sick with no cure?  Would that strengthen your faith or wipe any trace of it from your life?  What kind of legacy will you leave behind?  If you’re too sick to work and thus always short on cash, how do you define success in your life when society places so much emphasis on status, power and wealth?  If you, like most of the chronically ill, had to scrap your original plans for what you wanted to be when you grew up, how will you find meaning in the life you’re given?  What is the meaning of life when that life is often confined to a single room?

In Between Awake And Asleep

 

This is, of course, an extremely subjective round-up, based mainly on my own experiences.  What will my distilled, concentrated life look like?  What causes will I champion and where will my energy reserves go?  Where will yours?  Chronic illness tends to create mini philosophers, whether we will have it or not.  And while I will never have all the answers, the questions are still worth pondering.

 

Fae Light – Dedeker looks like she’s pondering Big Questions.

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To The Lost Fundraiser

As a continuation of my last post, this one will also be talking about Andrew Ashcraft, the boy I played with when I was young who grew up to be one of the fallen Hotshot heroes from Arizona’s recent fires.

I created a photo to work through my grief, as I often do, but it didn’t feel like enough.  I kept thinking about Andrew’s poor widow, left with their four very young children to raise, all on her own.  And then I’d think about the families of the 18 other firefighters and how would they get by, and I had to do something.

So, 75% of all profits made from any sales of To The Lost will go to directly to the families through the donation program set up.  This applied to anything and everything To The Lost appears on.  I have, of course, my extremely beautiful and archival fine art prints, and also blank cards, stickers, clothing, Ipod, Iphone and Ipad cases.

There are 19 families left without fathers, husbands, providers.  The last thing they need while they’re still reeling from the profound loss is to worry about how the bills are going to get paid.  Let’s give them some of the aid they need.

To The Lost

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To The Lost

It was last Tuesday, July 2nd, that I found out about the tragic deaths of the nineteen firefighters in Arizona a few days earlier.  At the same time, I discovered my childhood friend, Andrew Ashcraft, was one of those lost.  It took a while to sink in.  Andrew, who I had played with for years, was gone.

Not only Andrew, but eighteen others of Arizona’s finest firefighters were lost.   They were called the Granite Mountain Hotshot crew; essentially the Navy Seals of the fire world.  They were trained to go into the deadliest, most dire situations and kick the fire’s ass.  They went in to make a fuel break for the devastating forest fire when the wind changed and trapped them.  There was no escape.

My heart breaks for Andrew’s widow, left to raise their four very young children, the oldest of whom is merely six, by herself.  It breaks for Andrew’s mother Deborah, who has to bury one of her children.  It breaks for the eighteen others families in the same situation.

Andrew with his family

Andrew was only 29.  He had been named the 2011 Rookie of the Year in the Hotshot crew.  He’d had to really work to get into the crew.   That was what he wanted to do.  He chose to be the best, bravest, most worthy of men.  I am in awe.

It’s important for me to state that it had been a long time since I’d seen Andrew… I was probably 13 or so.  But he and his brother TJ were a big part of my childhood.   Our moms were friends and would frequently trade babysitting, so for years my brother and I saw and played with the Ashcraft boys several times a week.  My brother was the oldest of us, TJ was next, then me and Andrew was the youngest, even though only four years separated us all.  It was just enough of an age difference that the older two boys would want to go off and do Secret Older Boy Things together (mostly involving GI Joes, as I recall) so Andrew and I were often our own group… which sometimes consisted merely of sulking about being left out of Secret Boy Things.  But we made our own fun.

I can’t find a photo of the four of us together, but here’s a photo of myself (in front), TJ and my brother in some strange church play.

One of the clearest memories I have of the four of us is arguing heatedly over who played which character when we would play Batman.  My brother, the oldest, was naturally Batman.  When he and I played it at home, I was Robin, and I felt that was my part.  But TJ’s slight age difference made a good argument in the logic of children for him assuming the role of Robin.  The debate was settled when we found out about Batgirl, who I would obviously play, leaving Robin to TJ.  But poor Andrew was always forced to play Alfred or some random henchmen; he never got to play a really good character.  I had laughingly told this story to Geoff quite a while ago, not realizing the irony that was to come.

Andrew grew up to be a real, living, actual hero.  He lived his heroism more than any person I know of.  He went out doing what he loved, with the men he loved, and if he ever felt fear, he never let it stop him.  I am so sad his family has lost him.  I am sad that the world has lost such an amazing person.  And I am sad that I never got to know Andrew at this age, that we lost touch, and I only discovered what an incredible person he was second hand.  The world is nineteen wonderful souls poorer.

As I cried into Geoff’s chest the day I heard the news, one of the first things he asked was how I was going to work through my feelings photographically.  This is just one of the many reasons I love him, because I was already mentally hard at work trying out different concepts and trying to figure it out.  As I was working through my grief and trying to put my feelings into a visual form, I was also talking a lot with Katie, who had recently experienced a similar kind of loss.  It was a great comfort to have her and other people in my life familiar with grief to talk to.  Katie and I already had a shoot planned in a few days, so I told her to just expect that we would shoot something to honor Andrew and the other firefighters.

This was another shoot done on a non-budget.  It took just a few big, yellow smoke bombs and the fresh flowers.  Also, HUGE thanks to Geoff for being my human shutter release!

Usually I edit things in order of them being shot, as that seems fairest, but this got bumped way up in line.  I really wanted it to be released today, the day of the big memorial service in Prescott.  You’ll see that Katie is playing the role of the rescuer, pulling me to safety, but not far from the danger herself.  The smoke wrapping around my body and throat actually happened exactly like that, straight out of camera, and seems to want to pull me back and not let go.  Katie is carrying nineteen large orange, yellow and red flowers, symbolizing the fallen heroes, and I like that there are smaller yellow flowers connected to the stalks; they seem to symbolize the fireman’s family.

When I searched for a title for this photo, I immediately remembered what Jimmy in Boardwalk Empire says before each drink instead of the standard “cheers” or “bottom’s up;” he says “to the lost.”  For Jimmy it was about his lost comrades during the war, but it seemed to fit here perfectly.  This is also only the second time I’ve ever done a square crop on a photo.  For the most part I stick very strictly to my 2×3 ratio.  This photo just called for something else, so I went with it.  There are some detail shots of the photo below.

I hope Andrew’s family heals as quickly as it can, along with the rest of the families.  There is nothing I can say or do that can make it better for them.  How I wish there was.  All I can do is try to honor the fallen heroes, with my words, my photos, and my many, many tears.

Andrew was a badass… but the very best kind, who hasn’t lost his softer side.  He was a true hero, like Prince Lir.  We didn’t know that Andrew was the biggest hero of us all.

He should have been Batman.

You can donate directly to Andrew’s family here.

To The Lost

To The Lost – detail

To The Lost – detail

To The Lost – detail

To The Lost – detail

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