Does This Oxygen Tank Make Me Look Badass?

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.

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Sometimes It Just Takes a Backpack…

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.

“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.

 

What would’ve helped

No one will ever tell you how to cope with getting a serious illness, not even your doctors.  You think they will know, but they won’t.  It is unrealistic to think they would.  Remember, they went to medical school, not social work school.  But the poor souls are saddled with you and me and whatever illness we bring to the exam table.  When they ask how you are feeling, you may be tempted to answer, “Isolated and wallowing in an identity crisis.”  Resist this urge.  This is not their area of expertise.   For all you know, they’re wallowing too.

They do want to help though.  They want to give you the drug or the surgery or whatever and figure out the problem so that you won’t have to visit so often or maybe never again.  They want to figure it out.  But it isn’t always that easy because sometimes you are both trying to figure out two totally different things.

They will give you medication to try to solve or treat certain problems.  Those drugs will have stickers on the bottles to stop you from “taking with milk” or “don’t operate heavy machinery.”  These are helpful tips.  They are the “how to’s” of drugs.

I wish everything else was that simple.

I wish illness came with warning stickers.  Do’s and don’ts.  The kind of things that go beyond the physical symptom to the day-to-day experience of living with a disease.  I wish I knew what to do when life flips upside down.  In all of my appointments, tests, emails with doctors, exams, bloodwork, I wish I could have had a guide.

Yes, a guide.

A truth teller.

A sage.

Someone who could roll their eyes at you, smack on some gum and put their arm around you while calling you “Hon” on the rough days.  I think my sage would be older than me and a cross between a Flo from the tv show Alice (sassy waitress) and Tyne Daily when she played the insightful, seen it  and been there mom on Judging Amy.   My guide would be part Wise Woman and part Salty Broad.

I longed for someone to tell me how to handle all of this, to make sense of things when everything was out of my control.  A guide could have helped me to know how to ingest everything from less than satisfying doctor’s appointments to the waves of emotion that hit when I was exhausted from, well, everything.  A guide could have helped me to see what friends were helpful and what friends were not—rather than having me run it over and over again in my brain trying to make sense of it.  A guide could have helped me navigate the waters of identity that get so muddied up when suddenly your old life is inaccessible and you have this new, unpleasant and unwanted life.  A guide wouldn’t have been threatened by my tantrums or by my tears.  They would have known It’s all a part of the process hun.

I imagine my guide’s name would have been Pearl  Something practical and real.  Pearl won’t bullshit you.  Pearl will know how it is and won’t be afraid to tell you when to pull your head out of your ass and deal.  Pearl also would know that Sometimes honey, you just need to mourn the life you left.  She would tell me when my brain was spinning in appointments or after—which is usually when it spins—when I am finally wrapping my head around whatever new thing the doctors want to do.  New equals scary.  Even if it is not.  New is uncharted territory.  New requires adjustment.  Pearl would remind my brain when New freaked me out that we have been here before.  New fades and then it is ok.

And even if it isn’ t ok, then it is familiar.

What I know…

If you have never had a serious or chronic illness you think you know what it will be like.  You visualize someone—frail and emaciated with thinning hair—nervously checking their watch to see if they need to take medication.  These are the people you feel bad for.  People whose whole lives have been reduced to repetitive trips to the doctor and a litany of side effects.   And you think to yourself—with some guilt—I’m so glad I don’t have that.  Someone who has a serious illness—you think—must face the fact that their life is broken.

Pyoderma Gangrenosum.  8 glorious syllables that sound like a Harry Potter spell. Say it slowly with me with a flourish of the wand as each syllable pulls through the air.  Pyo….derma….Gang—-ren…..o…sum!  It casts an incantation that causes the target—36 year old me—to break out in painful, blood-filled boils.  Yes.  BOILS.  It’s an auto-immune disease that affects 1 in 100,000 people—it’s rare.  I also have it in my lungs.  Uber-rare. Freakishly rare.  The doctor who called it “exotic” made me like her immediately. I am many things. Exotic is not one of them.

In all of this insanity, as you embrace what it is like to have your body be totally out of your control, you might think it will suck.

And it will.  Oh boy, will it suck.  Like a big o’l Dyson vacuum it will suck.  There will be tears and exhaustion, anger and embarrassment, isolation and fear, surgeries, drugs, awkwardness, and the feeling that things will never go back to the way things were before.  There will be a mourning of the loss of you.

But here is the thing no one tells you.  The secret is that it will not suck all of the time.

You think it will.  But it won’t.

Some of the time it will be incredible.