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.”

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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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.

 

Boils, Blood and Baffled…and we’re just getting started.

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“Well let’s see what’s going on” the doctor says.  She is older than I am, likely in her 50’s and warm.  The fluorescent lights brighten the windowless room.

My dad is quiet in the chair to the side while I sit on the exam table, my legs dangling beneath me like a kid on the bars at school.  In a t-shirt and sweats, I look like I’m hanging out.  I look like I’m fine.  I wonder if the doctor thinks, “She’s 36, why is her dad here?”

“Well…” I hesitate.  Then I scoot back so my legs are straight in front of me and I carefully pull both of the pant legs of my thick cotton sweats up to my knees.

“Oh my.”  She says. I’m not sure if this is what doctors are supposed to say, but I appreciate her honesty.  I am glad she doesn’t hide her shock like other doctors might.  Her oh my validates what’s happening.  It gives me a little doctor street cred.

It acknowledges I am not imagining how hideous this is.

From the knees down, my legs have 20 boils all over them.  Each one to two inches in diameter and easily ½ an inch off of the skin.  They are full, deep red and raw from the blood beneath the surface and they hurt like hell.

When I start to cry around her later from the cumulative stress of the past 7 days of this, she comes over to my side and hugs me.

 

The Elusive Goodbye

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The hospice room is large—the bed, its center—but it is empty.  Where are you?

In your room, perpendicular to the bed, and there’s a chair where your awkward body sits, slumps really.  You’re propped up like you’re feeling fine—that’s what healthy people do, they sit—but instead of attentive and alert, you are a rag doll.  Your head flopped useless to the side, your mop of brown hair piled on top of your head like this is normal.  Your bloated stomach from the swelling and the tumor looks wrong on you.  This is not how cute, college girls of 23 look.  You do not belong in this place with old bodies, bald heads and loose skin on bones like lace.  This place, where death hangs on the walls like yellowed paint.

 

Best Communication Tool Ever

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If you want to know one of the gold standard phrases for effective communication with another human being, say this outloud.   NOW.

“Do you want me to listen, or do you want me to comment?”

Did you exhale right then as you heard it in your own mind?  Were you hit with a wave of peace at the thought?  Did you think of a list of people you would like to hear this from in your real world?  Family members?  Friends? Spouses?  Co-workers? Parents?  Keep going, the list is long.  The idea that we could decide how people respond to our sharings is powerful.  The idea that we can request listening only as an option is unheard of.   Too often someone gives their own commentary on our sharings when we aren’t looking for that.

Denny McLoughlin coined the phrase “Do you want me to listen or do you want me to comment?” and I’ve eaten it whole.  It also works great with teenagers if you curious.  Teenagers love it.   The teens I’ve taught this to plead with me, “Will you teach that to my parents?”

There have been a number of times, at the camp I worked at, when a teen shared something personal and heartfelt with me.  I responded with “Do you want me to listen or comment?”

The teen would say, “Listen.”

And I would listen. I would usually have things to say, but I would bite my tongue and try to enjoy the fact that the only thing I had to do right then was Listen.  Not come up with something brilliant, I only had to hear them.

Then, after listening, nodding and soaking up what they said, they almost always said, “Ok, you can comment now.”

It is empowering to control who gets to comment on your life.  And when they do comment, it is because we invited them in, rather than finding out they had broken down the door.

This line tends to go hand in hand with another one of Denny’s teachings.

“Any unasked for advice is criticism.”

Sit with that for a second—Any unasked for advice is criticism—and think of the number of times someone has suggested what you should do, or how you should feel, or how you need to  react to some situation.  Did you want to punch them?  Did you find yourself suddenly annoyed?  Was it maybe because their comments felt like they were saying, “You aren’t doing this right.”?

This happens a lot in the health world.  If you have a disease, people have opinions.

And suggestions.

And comments.

And tips.

Some of my personal favorites are “Have you ever thought of seeing a specialist about this?” 

I also remember repeatedly being told, “Have you talked to a naturopath?”

Other times their opinions came in the form of how to handle what was happening, “You know you just need to stay positive.” 

All of these types of comments, these comments that were not requested, are intended to help.  They are intended to show me how much they care and want to be supportive.  But the reality is they often have the opposite effect.

Of course I have thought of seeing a specialist.  I AM seeing a specialist.  I am seeing multiple specialists.  I’ve got a whole team of special people. I’m up to my neck in specialists.  (If you worry a disease will affect your ability to be sarcastic, I am here to reassure you, it will not.)

No, I have not seen a naturopath.  I have nothing against them, but I’m already pretty overwhelmed by all the other stuff this disease entails. 

And lastly,  I’m don’t always feel positive.  Maybe I’m not supposed to always feel positive.  When you suggest that I should be positive, and I don’t feel like it—when I am sick and tired of being sick and tired—you indirectly suggest that I am not handling this the “right” way. 

Unasked for advice is criticism.  Even unintended.  It is why we bristle when we hear it.  It is why our eyebrows knit together, why we take a deep breath, why we bite our tongue.

Instead, here are some comments I find immensely more helpful.  Feel free to steal them.

“Sounds like a lot to manage.  Can I bring you chocolate?”

“Any awesomely weird side-effects from the drugs you want to talk about?” 

“If you ever want to bitch about this, feel free to call.  I’m all ears.” 

 

Now that’s the kind of comment I want to hear.

 

 

 

 

Funeral Survival Guide…let’s just call it what it is.

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Funerals are minefields.  That’s right, I said it.  One wrong step and—wait for it—BOOM, there goes your favorite arm.  They should be.  Everyone is doing the best they can, trying to limp their way through a haze of grief and say goodbye to someone who has only been gone a few days, but it is a minefield.  Pack up your field armor and take a deep breath—minefield.

The number of things that can stress out even the most socially confident person are baffling at a funeral.  Get together a bunch of people—many of who don’t even know each other—and then try to tackle the soul sucking experience of saying goodbye to a loved one.

I’ve collected a few notes that make funerals especially daunting in the midst of your grief.  These are the things that can trigger the explosion, derail the train, snowball out of control (pick whatever metaphor revs your engine.)

*The Ugly Cry.

If you loved the person, chances are you are concerned about the ugly cry.  This is no sniff sniff, dab dab of the Kleenex, this is the Turn the faucet on waterworks.  It is the This snot won’t stop running down my lip onslaught.  Enter bright red cheeks, puffy eyes.   Most significant about the ugly cry is that it came on without your permission and it won’t stop until it is GOSH DARN READY TO STOP.

*The Who Will Be There? Factor. 

Not only are you trying to emotionally wrap your head around the fact that you will not see this person again, no more texts, no more banter, no more visits, you have to think of the Who else is going to show up that I might not be emotionally prepped to see factor.  A funeral I went to yesterday involved this.  I went with a friend of mine—let’s call her Cindy—and told her, “Person X may show up. I’m not sure.  We haven’t talked in ages.  Nothing bad, but if person X shows up and I say to you, “Hey Cindy, this is person X,” know that that is a CODE BLUE.  (or red…whatever code means DO NOT LEAVE while I adjust.)

*The What Do I Say? 

If words could cause paralysis, it would happen at a funeral.  Talk about pressure.   A person has just lost a parent, a spouse, a child, a friend and you have to come up with the words—the right words, nay, the perfect words—that both celebrate the person, offer compassion and support and are neither too depressing or too lighthearted.  At the funeral I was at yesterday (parents who had lost their 23 year old daughter to cancer) I heard them saying over and over again, “Thank you so much for coming.”  I bet they didn’t know what to say either.

*What The Departed Would Have Wanted torment.  This is when you hear the dreaded phrases of

“She wouldn’t have wanted us to be sad.”

“She would want us to remember good things about her and not cry.”

Suddenly I’m annoyed.  Now I have what is known in funeral circles as Guilt Mourning.  I have to mourn the way the departed would have wanted.  To be honest, I’m not even sure that the departed would have felt that way.  But some person—trying to show how well they know her by issuing an edict of What she wanted—is  now telling me that, if I feel like a big o’l hot mess, that I am not mourning correctly.  That I have somehow let them down.

Guess what?  I don’t buy it.

My friend—let’s call her Ruth—said yesterday to me, “When I die.  I HOPE somebody is sad.   I don’t want them to fall into a deep depression over me.  I don’t want them to stop living their life.  But YEAH, I want them to be sad I’m gone.”

Guess what Ruth?  I can do that.  No problem.

Because I honestly think I can celebrate the departed’s life while mourning my loss at the same time.  The other night Cindy and I drank Kool-Aid (the departed’s drink of choice) while toasting her with tears in our eyes at the same time.

So what is a person to do when faced with a funeral?

Have a game plan and remember a couple of things.

1) Be prepared.

Have something you want to say to the loved one’s family before you go up to them.  Pee first before the service—you’re likely to be anxious facing this and it will be hard to focus on your loved one with a full bladder.  Have Kleenex and waterproof mascara.

2) Say goodbye how you need to, not how anyone else needs you to.

If that means going to the beach, going to the service, going shopping and getting some retail therapy or bawling on your couch, do it.  Kool-Aid helps.

3) Running into people you haven’t seen in ages is sometimes a good thing. 

I ran into an old friend yesterday and, even though we had grown apart, when we saw each other at the service, nodded and smiled, both of our eyes filled with tears.  Connection is connection.

4) This will not be the only time you say goodbye to this person.

Goodbyes with the ones that are close to us happen a thousand times and they still hang around.  You didn’t get to know the person in an hour and you aren’t going to let them go in an hour either.

5)  Don’t be afraid of the Ugly Cry.

Think of it as validation that you loved this person, that they impacted you and that you will miss them.  The more snot the better.

That’s the way they would want it.