Some days I’m just not as cool as I would like to be…a patient’s guide.

I’ve been poked, prodded, xrayed, cat scanned, operated on, radiated, examined and infused. I am guinea pig. I am a patient.

Once a month I spend a couple hours sitting in a foam green reclining chair having an immunosuppressant shot through my veins. The nurses find a vein, we both hope for a one-poke success rate and we get to the business of giving me a—wait for it—$14,000 medication in a small baggy the size of a sandwich Ziploc.   Like having a Hyundai for your veins. It chills me a little so I take advantage of the warm blankets they have, open some carefully chosen snacks and entertain myself for the next 2 hours.

Sometime a close friend comes. A small, selective group of individuals have been allowed to observe this, to be welcomed into that part of my life. I like it when they come.   I like pulling back the curtain on that part of my life. It is the part they have only heard me reference in conversation. I like when they hear one of the nurses walk by and yell, “Hey Hot Pants!” to me.

Today I was solo. Solitude in the hospital is often interrupted by bells in the hallways, nurses conversations at the stations outside my room door and the alarm bells that go off on the IV machine’s mechanics. That’ll give you a jolt. When people say, “I’m so sorry you have to do that.” I point out that I get to sit quietly in a chair for 2 hours and pretty much not move.

Forced Be Still time.

And then there are days like today.

Have you ever wondered what it would be like to have someone ram a bar of soap under the surface of your forearm? Ever wondered what it would feel like to notice that your wrist was suddenly aching more than the typical irritation of where the IV goes in? I know.

I pulled the gauze and tape back, trying to get the tug and pull on my skin to ease, hoping that would help the ache. When I pulled it back, there sat a lump on my forearm, right near my wrist. It was the size of a bar of soap. My eyes bugged and seen it been there me quickly turned to freaked out me.

I grabbed the button to call the nurses and pressed, hearing the beep start outside my door. 2 nurses came in and saw the enormous lump on my arm. They seemed unfazed by it, calling it an infiltration and explaining that the medication apparently had escaped my veins and was now making the lump in my arm. Did they not see the grotesque bulge? Would it have killed them to summon some horror or gasp at the weirdness? Something? Something to act like it was a little bit worthy of a small freak out?

Next time I’m going to heed the self-help books and ask for what I need. It will sound something like this, “Nurse…I need you to say, ‘Holy crap, that’s a biggie. No wonder you panicked and knocked the empty Coke can off the chair’s tray. Let’s just put some heat on that and give it some time to go down.’”

Either that or they could have opened with, “That is an alien baby inside there so we’re going to need you to put this heat on it to make the birth easier.”

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Grown-up Tantrums Have Their Place

Sometimes I don’t take my medicine as an act of defiance.

Sometimes it is a grown-up version of a tantrum.

I rarely forget to take them.

When I don’t take the pills it is almost always on purpose.

           A screw it..sometimes a screw you. 

           I look at the pills—sometimes I glare—their ugly orange plastic tubes, mislaid warning stickers and fluctuating pill levels and think about how I just don’t feel like it.   I resent them.  After 6 years of daily medications I can’t tell you how many days I haven’t taken my medicine but I’ll admit is more than I’d like to admit.

I’ve never charted it but I bet it is directly connected to my hard days. There is something satisfying with putting a cherry on top of a really lousy day by saying, “Screw it. I don’t care. I’m not taking them today.”

Sometimes if I am feeling especially irritated, frustrated, or hurt by someone that’s a good reason too. It’s self-sabotaging, but what can you do?

Take your meds.  You say.

You take em. I say.

Does This Oxygen Tank Make Me Look Badass?

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Heaving the heavy pack onto my shoulders after so many years was both familiar and forgotten.

The closest thing I’d felt to its bulky weight was the solid smack of my oxygen tank hanging loosely on the same shoulder for 2 ½ years.  “Tank’s” nasal cannula tube draped down my back, the prongs pulling in protest against my nostrils as the regulator pulsed puffs of oxygen.

The pack—which I affectionately referred to as the BMW of backpacks—had a sleek, silver design and was everything my silver oxygen tank was not.  Adventure. Activity.  Independence.  Healthy. 

But that was Hiking Me

Current Me is short of breath, fatigued by even the gentlest of hikes and aware of the way the hip belt digs into my stomach from the extra 35 pounds of prednisone weight.  Current Me hikes alone so that I can get back to Hiking Me without being embarrassed at my pace and how a relatively flat hike can kick my ass from here to there. 

Surprisingly, now that Tank is no longer my companion, Current Me savors the ability to hike at all.   My pride is on my sweaty back, my new fleece pullover and my muddy boots.

I fought the Ape Caves and the Ape Caves won…

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When Don invited me to go to the Ape Caves, I thought he was joking.

Did you say Ape Caves?

Ape Caves are the “longest continuous lava tube in the continental U.S.” (thank you very much Wikipedia) and are located in the Gifford Pinchot National Forest in Southwest-ish Washington. They are a balmy 42 degrees year round.   He thought we should hike it.

Hiking in the dark didn’t seem like the smartest idea, but it had been so long since I had hiked anywhere—sans oxygen tank—I was anxious to prove myself. There were times I was constantly trying to prove that I could handle things.

Traveling alone.

Getting a disease.

Carting an oxygen tank around at 36.

Friends getting cancer at an exceptionally high rate and especially young ages.

I wanted others to believe that I could handle it. I wanted to believe it myself, that I have somehow “got this.” I wanted to think that what drops other people to the floor would not drop me. I would be the exception. I wanted to believe that I would not be disarmed by tests, by drugs, by side effects, by the anticipation of massive loss.

So—hiking boots firmly tied, flashlight and headlamp at the ready—we descended into the cave.   Its walls damp and green further and further down until they were bare and almost entirely dark. The floor was uneven and rough. I wanted my stride to be confident, handling each up and down of natural steps with agility and comfort.

Instead I was awkward. My arms stretched to the side at times, ready to catch myself with each unseen crack and drop of the floor beneath me. My headlamp—which seemed just fine when I’d checked it above ground, was less beacon, more tealight down here.

It’s tough to prove yourself when you look as if you might land on your butt at any moment.

About a mile into the cave Don and I waited till we were alone and shut off our lights. No one else was around as we put our hands in front of our faces—totally unable to see them—and marveled at our own blindness.

Further in the tunnel—in a moment we will call Ultimate Graceful Essence—I bought it. A sideways falling with my hands smashing awkwardly onto the rocky floor, my right hip smacked the pumpkin-size rock with all my body weight and my knees scraped along the calloused surface of the lava tube.

I’m not sure which happened first, the bleeding or the swearing.

Bleeding hand with peeled back skin like chipped paint and blood mixed with dirt and stinging. My knees—bleeding—looked like a 8 year old who had fallen off their bike and wanders into the house with dripped blood down the shins. Genius. Could you pick a little less convenient place to bite it? My hip ached. For a moment I was afraid to move out of fear I had really hurt myself and moving would make it worse.

There was something a little embarrassing about having a place called Ape Caves kick my ass. Had they had a more intimidating name it might have been a point of pride for me. I wish I could have impressed people with things like….

Dragon’s Gauntlet showed me who’s boss.

Or

Satan’s Wall really schooled me.

Instead, the truth of it was The Ape Caves—named after a Boy Scout troop by the way—bullied me.

Still, there was something about it. Getting up—battle wounds still bleeding—and continuing on. There was something bold about it for me. If it hadn’t hurt so much I might have sat down on the ground and laughed about it. Those caves were a physical manifestation of the butt kicking I had taken for the last 4 years. But you get up. Why? Because really, what is the alternative?

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You’re gonna think I’m nuts, but hear me out.

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I believe in signs.

I don’t always know whether they are coincidence, signs from The Universe, or God or what, but I believe in their significance.  If that sounds too woo-woo, tree-hugging, new age whatever to you, I totally get it.  I’ve hugged a tree before and I’ll probably do it again.  But hear me out.

If your body can send signals that you are sick or something is not right, or body language can tell us things without you saying a word, then why not other signs?  Who is to say that we can’t be prompted into noticing things that we would normally blow off?  Who is to say there isn’t a greater message there?

Did that pair of shoes just tell me to buy them online?  Why yes, yes it did.

Who am I to argue?

Recently I had an experience that felt like this.  My dear friend Meagan Jones passed away recently at the ripe old age of 23…wrong in every sense of the word.   She was blunt and honest and loyal as hell.  She had an edge when she was annoyed and was brave when she shared the difficult truths of her life.

It had been about a month when I was sitting in church not paying attention—I’ll own that—and was thinking of her, noticing that even though she had died recently, I hadn’t thought of her for a few days.  I know in my head this is normal.  Still, the guilt arrived at the entrance to my thoughts and started pounding on the door.

“So soon?”   Guilt demanded, “You are forgetting her already?  Did your friendship mean so little to you that you forget a mere month-ish later?  That’s pathetic.”

Shoving Guilt aside, my mind drifted and tried to focus again on what was happening in the class at church.  They were doing introductions of new people.

“Welcome, what’s your name?” The class teacher said.

“Meagan Jones.”  The young woman asked.  I stopped breathing for a moment.

I don’t share this to make it seem extraordinary, just to point it out… The Don’t Miss This Moment of that experience.  “Her name is common,” Doubt countered.  But that’s not the point.  The point is that sometimes the universe, or coincidence, or God or even the incomparable Meagan Jones takes the time to show us something and the importance lies in our noticing.

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Why I Press the Shutter…Why Certain Images Grill My Cheese

ImageWhat is it that makes someone me press the shutter?  What is it about that moment that makes a photographer–I sound so swanky when I refer to myself that way–say, “Now”?  As someone who got on WordPress to write, I take photos for the same reason I write.  I want to capture something.  I want to get it exactly like it was…a moment, a look, a conversation, an image.  

Above image-Little Cottonwood Canyon near Alta Ski Resort, Salt Lake City, Utah.  

This photo was my respite from an incredibly stressful funeral for my grandmother.  Even late into the fall, it still held surprises as we drove further up the canyon.  It was an escape. 

 

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Above image-a close-up of one of the oxygen tanks I used.  

Cart around an oxygen tank for 2.5 years and you might find yourself taking its picture too.  The oxygen, my regular companion–loathed and appreciated at the same time–was never something I saw in my future and never something I felt would ever be “normal” for me.  It would always be an awkward appendage.  This picture isn’t about irritation though.  When I took it this was about acceptance. 

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Above image-a dear friend, in a cemetery.

What draws me to this picture is the warmth despite the winter trees, the bare branches and the fact that 20 feet away were acres of headstones.  When photographing people I know, I am drawn to the idea of being able to capture “them.”  Writing is the same way for me. When I write about people I know, I want the reader to see them the way I do.  My friend S says “You always write me better than I am,” but that is how I see her.

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Above image-a ghost town jail in Western Montana.  This is where they would chain the prisoners to the floor.

The macro lens lets me see every grain of dirt in the floor, the scratches in the metal, and the grain in the wood.  In the same cell there was a small window that looked up on the hill where the prisoners’ hanging would take place.  When I look at this photo, I think of all the people that were attached to the metal and all the stories I don’t know.  

 

 

 

Sometimes It Just Takes a Backpack…

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Yesterday—deep in the woods of the Olympic National Park—I found a little part of myself.

I’ve been lost for a while.  Maybe you know the feeling.  The uncertainty that comes when life turns upside down and the memory of who you were before slips away like dreams in the morning.

I was healthy…then I wasn’t. 

I never thought about my breathing…then I thought about it often.

I was enthusiastic and full of energy…then I couldn’t remember what that felt like. 

I didn’t forget who I was overnight.  The loss was almost imperceptible.  Faint moments of forgetting replaced by whatever pressing matter was at hand.  Old thoughts replaced by new concerns, bigger concerns.

I know you used to do that…but NOW you do this.

I used to hang out with friends…now my social calendar included my doctors. 

Stumbling across little bits of me was a process.  Wandering down the trail I saw myself scattered like rose petals dropped carefully by a flower girl.  A little here.  A little there.   I had not lost myself all at once. It made sense that I wouldn’t find myself all at once either.

It started in the ranger station parking lot.

  • The familiar confidence of my hiking boots.
  • The daypack with enough water and snacks.
  • The extra Ziploc of emergency essentials—a pocket knife, small flashlight, a lighter, and a small first aid kit among other things.

My first step on the trail was a moment of pride.

Oh yes, I remember now.  This is who I am.

I picked up that part of me and made space for it in my pack.

Further down the trail, my feet falling into comfortable cadence, my breath escaped. This part was New Me.  Short-of-breath-me.  Can’t-quite-get-a-full-breath-in-damnit-me.

New Me—like a needy child—asserted herself and announced, “I’m here too!  And I’ve been here awhile, so don’t go hiking off without me!”

So I told Old Me, “Hold on a minute.  New Me needs some attention.”

And I slowed down a little and fought the short of breath, incomplete feeling.  Then I kept hiking.  I have this place to myself.

After 15 minutes, the trail begins to climb.  Nothing drastic, but enough to make my thighs start to burn and send my pulse to thumping.  The nature worship of only minutes earlier is not replaced with Ok, just get to that point up there and you can rest.

Soon, the trail levels out and I find myself again at the top.  I see the Oh yes, I can do this.  I remember this.  I put that part of me in the pack and keep hiking.  My photos along the way are my proof that I did this.  They are my evidence that I remember Old Me.

This trail, this green and mossy trail, with its Douglas Firs and Cedars standing protectively nearby, is my last 7 years.  And I am back.

I am humming Stephen Sondheim’s closing song to his musical Into the Woods.   All respect to Steve, I claimed the lyrics as I hiked.  He must have known my story.

The way is dark,
The light is dim,
But now there’s you, me, her, and him.
The chances look small,
The choices look grim,
But everything you learn there
Will help when you return there…

Into the woods–you have to grope,
But that’s the way you learn to cope.
Into the woods to find there’s hope
Of getting through the journey.

I’m not the same me now as I was before all of this started.

But we’re in the same neck of the woods.