not to put too fine a point on it…

I’ve spent a lot of time with this here new blog not writing anything.  Just staring at that electronic blank sheet.  I feel like there should be something monumental, or at least pressing, to kick things off.  A purpose, if you will.  But nothing keeps happening.  Over and over.  So, alas…here we go.

A while back, in another lifetime, I wrote about some axes and laid on some father/son imagery nice and heavy.  Well, I haven’t stopped thinking about axes, you see, but everytime I’ve gone out shopping for one all I can find is some newfangled composite handle job.  It seems no one makes a real wooden handle anymore, the kind you can carve down into a hatchet for your kid when the time comes.

And I haven’t stopped being a father.  Or a son.

A couple of weeks ago I was in my parent’s garage, going through some of my dad’s old tools.  Even though he’s been gone a while, it never stops feeling solemn and strange.  especially in his space, touching his stuff.  I’ve taken some things over the years, sentimental items or just stuff I thought I could use, but there is still a lot sitting right where he left it.  Moving them for the first time in years was hard; they felt heavy for their weight.  Over the course of a couple quiet, reflective days, I was able to fill a toolbox full of memory and inspiration.

And then, on a bright and clear late winter afternoon, whadya think I saw sticking up in the far corner of the garage?  Yep, an axe handle.  Wooden, weathered, and touched.  Used.  By my pops.  And right near it, I’ll be damned if there wasn’t a hatchet.  Sometimes I look really hard for things that are close at hand.  Sometimes if you need an axe, just look in the garage.  As we drove back to Nashville with the toolbox weighing down the trunk, and the axe and the hatchet, I imagined the look on my old man’s face as I tried to explain the symbolism of it all…and Gary Snyder…and Ezra Pound…and Chinese poets.  But the thing about an axe is, it can’t have too fine an edge, or it’ll just break.  You have to keep it honed just enough, or else it misses the point.

the last

I don’t take pills.  No, not anymore.  I did yesterday.  And the day before that, and the day before that, and the day before that, and the day before, and the day before, and the day before, and before, and before, and before, and, and, and, and and and and and and and

and now I don’t.

Today I woke up a free man, unburdened by the thought that I had something wrong with me, something that had to be corrected.  It was always the first thing I did, every morning, take those pills.  Usually before I had coffee, often before I saw my family or uttered a word.  Silent, solemn, simple.  The bottle right there on the counter, so I could never forget.  But today, in the quiet chaos that is our morning routine, I just didn’t have any pills to take.  There just simply aren’t any more; I’m done with that nonsense.

I’ve put the last, empty pill bottle in a kitchen drawer for some reason.  In case there’s been some sort of mistake, I guess, and the doctors or authorities need my medication information.  Or someone calls in another refill on my behalf.  It’ll be there in the drawer, for a while.  But other than that, there’s no sign of what used to be.  No scars, no x-rays on the wall, no sutures.  Just this blog.  And it really is time to put it, also, in the back of a drawer.  The last post here was six months ago, and I bragged about maybe getting off the junk by the end of the year.  Now it’s the beginning of August, and I’m clean, I’m clean, I’m clean.  So squeaky it’s obscene.  As I stare down the business end of my favorite time of year, I couldn’t ask for a better transition.  Two-thousand twelve has already been one of the best years of my life.  And today, stepping out of the shadow of years of pill bottles hanging over my head, I expect it to finish on an even higher note.  My family and I have lots to be thankful for, and lots to celebrate, and lots of reasons to enjoy each other.  I appreciate, also, you fine folks for hanging around and sharing this space with me.  I encourage y’all to enjoy yourselves, as well, and we’ll all meet again to talk about happier things.

I sometimes struggle to find that just-right musical accompaniment, and sometimes they just appear.  Like this one.  I’m spending a lot of time lately listening to the amazing songs of my new neighbor Todd Snider.  I think you should, too, but I never came here to push any kind of agenda, just to share.  Much love.  Peace.

ok, don’t freak out

So, here’s the deal.  This here blog has been a great vehicle for me to do a lot of things.  I’ve been able to tackle some issues, vent a lot, drop some knowledge and share some music videos.  And it taught me a lot.  Mainly that I’ve got something to say, and I find comfort in/enjoy saying it out loud.  I started off wanting to help myself deal with some scary, mysterious stuff.  And I chose to do it in a (sort of) public forum.  But it’s starting to run its course.  I don’t know if I need it anymore.  I’m not sure if anyone does.

The reality is this place is sick.  This whole space exists under the pretense of a disease, and I think I need to get out from under it.  The time is right.  Not one, but two (TWO!) doctors gave me great reports on Monday.  I had a follow-up for some chest xrays with pulmonology and they looked great.  Eye exams were the same:  no lesions at all, just some minor scarring that even looked like it had begun to fade.  I began my new taper of prednisone today, down to three mg, and the new (realistic) goal is to be off completely by the end of the year.  Yep.  This year.  I didn’t think we’d see the end of this for two or three more years.  Shit, I might not even be sick; what if this was just a dream?  Now what?  I sure can’t hang around here, writing about this disease.  This place is beat.

But I’ve got things to say.  So from the ashes of sarcoidosis, like a proverbial phoenix without the color or spectacle, comes Cosmic Nashville.  For those so inclined, I will be using this as a forum to continue sharing my thoughts.  For the other two of you, I’m going to do it whether you’re inclined or not.  I will continue to post here at Sarcotherapy for sarcoid related things, but it really has become much less frequent all the time.  I hope that trend continues.  Everything else will be elsewhere.

Thanks to you for following along, and for all your encouraging thoughts and words.  Now, on to a healthier dialogue.

growing pains

Tumultuous times, here.

Waylon’s legs hurt.  From growing.  I guess I never knew that really happened; I certainly wasn’t prepared for it.  It keeps him up at night, mostly, and sometimes comes in the daylight, too.  The fact that he’s growing, and the fact that his doctor told him it’s completely normal and will ease, are no consolation.  He hurts.  So we rub his legs, and comfort him, and reflect on how much he’s grown.

My ego hurts.  From growing.  I stetched a little and wasn’t quite able to reach.  I certainly wasn’t prepared for it.  Most days I have a great life, and sometimes things come easily for me.  Sometimes they don’t, and when they don’t they come real hard.  Reflecting, I know this moment will pass, but it’s currently no consolation.  What I want and what I need are, apparantly, at odds right now.

This weekend brings family and the Drive-by Truckers to town; I’m really looking forward to the comfort and normalcy of both.  DBT are bringing along the Stones sax player, Bobby Keys.  (Don’t miss his solo, below.)    Rock and roll means well, but it can’t help telling young boys lies.  I guess I’m still trying to figure out who to believe (in).  Nashville continues to provide some small consolations.

four shadowing

Have you ever been bitten by a brown recluse?  Me neither, I don’t think.  But for a short time this morning, I thought I had.  I showed the “bite” to my wife and she set me straight.  “Honey, don’t you have a real disease to worry about?  Isn’t that enough?”  Or something like that.  OMG.  She was half-joking(?), but I hadn’t thought about that in a minute.

I don’t think things are going well, BTW.  My goal was to taper down to 4mg of prednisone by the beginning of this month, but 5mg was already kicking my ass.  No, months and months of hovering on 5mg was still kicking my ass.  It’s always amazing that the smaller the number means the bigger the punch.  Those little tiny doses.   Little.  Tiny.  Well, I want to get off of this shit as much as the next guy so I went for four anyway, and four is the loneliest number.  Standing in the cold kitchen, early morning, staring down those little white pills that are getting the best of me.  The lonliest number.  They look like more because I’m taking four 1mg instead of one bigger dose, and they hit like more.  I feel it in my hair.  I feel it in my clothes.  Everyone else feels it in my mood.

I lie awake sometimes, in the dark, thinking I’m going blind.  Who could tell?  I test my peripheral vision, but I can’t see in front of my face let alone fingers wiggling in the sideways distance.  LOL.  But, seriously, I think I’m going blind.  Shadows creep up on the corners of my eyes.  Driving has become an exhausting chore.  Things tunnel in with a weight that sometimes forces my eyes closed.  Or it could just be this ridiculous scratch on my glasses that looks like a skewered martini olive.  Or I’m going blind.

The doctors don’t see me that much these days.  I was supposed to have my first appointment in a while last week, but I had to reschedule.  Life gets in the way.  So I’ll go in January, and have some pictures taken of my lungs.  Just in time to make sure I’m cleared to run that marathon in April that I’ve signed up for.  And get the go ahead to taper down to 3mg.  Take that, pulmonary disease. WTF?  I don’t even know what I’m talking about anymore.

Jack White lives in Nashville.  U2 lives in the ’80’s.

axe handles

I don’t sleep well, most nights.  I could fall asleep standing, most days.  It is an irony that is lost on me.  An irony that has exhausted all its charm.  I toss and think about things of little consequence.  A year or so ago, I learned about this guy and I often think about making something similar.  Or whether I need to mow the lawn in the morning.  These are the type of things that occupy my restlessness.  I guess fatigue that doesn’t lessen regardless of sleep, ultimately, pays no mind to sleep.  My tired and my wake exist along parallel lines.  Long, long lines.

Waylon hasn’t been sleeping well, most nights.  He’s spending a lot of time up and about, and in our bed.  Someday, when he’s older, I’m sure I’ll love to hang out at midnight while the rest of the neighborhood sleeps.  But these days it’s just a bad habit.  One more habit of mine he doesn’t need to inherit.  He’s just a kid.  Though, if he sneaks into our room tonight, he’ll do it as a five year old.  He turns five in a few minutes.  The clock ticks as we speak.  I will wake up the father of a five year old.  I know it’s cliche as hell, but where’d the years go?

I’ve told myself for a while now that I need to clean up my act before my kids are old enough to remember.  Too late.  Waylon’s five, and I’m not the father he deserves.  I’m impatient, I’m moody, I’m quick to argue with him.  I’m preoccupied, I’m busy, I’m tired.  I forget sometimes that my every move shapes him.  I’m going to get better because I’m running out of time.  I’m always saying things like that.  I’m saying a lot of things about myself on his birthday.  I’m selfish and an egoist.

But he is fantastic.  He is smart (way advanced!) and adorable.  He has always been the sweetest and funniest one in the room.  He has a gentle soul with a wild outer shell.  His imagination is amazing, and when he sings it sounds like cake.  He is unabashedly loud and apologetically messy.  He devours books and remembers entire sections weeks later.  He is a horrible eater and a pretty good joke teller.  He’s way cooler than I give him credit for, and polite and respectful. He likes superheroes and cars and movies and running back and forth across the room.  He likes his cats and loves his family.  He’s an amazing little boy.

Once, in a prenatal class, I told a room full of strangers that I hoped Waylon would be born with my wife’s joy.  And I meant it, and he was.  He’s going to wake up in a few hours (minutes?) excited to be five, and who am I to take that joy away?  In fact, it’s my job to do my damnedest to make sure he never loses it.  And that starts tomorrow, before he’s too old to remember.

____________________________________

One afternoon the last week in April
Showing Kai how to throw a hatchet
One-half turn and it sticks in a stump.
He recalls the hatchet-head
Without a handle, in the shop
And go gets it, and wants it for his own
A broken off axe handle behind the door
Is long enough for a hatchet,
We cut it to length and take it
With the hatchet head
And working hatchet, to the wood block.
There I begin to shape the old handle
With the hatchet, and the phrase
First learned from Ezra Pound
Rings in my ears!
“When making an axe handle
the pattern is not far off.”
And I say this to Kai
“Look: We’ll shape the handle
By checking the handle
Of the axe we cut with–“
And he sees. And I hear it again:
It’s in Lu Ji’s Wên Fu, fourth century
A.D. “Essay on Literature” — in the
Preface: “In making the handle
Of an axe
By cutting wood with an axe
The model is indeed near at hand.”
My teacher Shih-hsiang Chen
Translated that and taught it years ago
And I see Pound was an axe
Chen was an axe, I am an axe
And my son a handle, soon
To be shaping again, model
And tool, craft of culture,
How we go on.

-Axe Handles
Gary Snyder

9/11/02

Do you remember where you were nine years ago today?  What you were doing?  Who you were with?  I do.  I remember it really well, almost like it was yesterday.  I spent the wee hours of the morning with some of my closest friends.  We drank and reminisced and drank.  We told stories and jokes and took lots of pictures.  It was a raucous, emotional time.    There were lots of memories to rehash.  And there were a lot of goodbyes to be said.  A lot of tears.

Then, after a few hours of sleep, I crammed almost everything I owned into a little red station wagon.  My girlfriend and I got in where there was still room and started driving half way across the country.  To a new house, where we would live together.  Together, for the first time.  It was kind of a big deal.  But it went really well.  It went so well, that we decided to stay together forever.  We got married, in fact, and moved to a couple of other houses in a couple of other states along the way.  We had a couple of kids, and that’s going really well, also.  Nine years ago today, the best stretch of my life began.  I am a different person, my wife is a different person, my friends are different, too.  We got new jobs, we got new stuff, we got sick, and we got better.  We get overjoyed and overwhelmed, and we get tired and we get up in the morning to see what happens next.  Because although my life has changed dramatically and exponentially in those years, it will change again tomorrow.  It’s richer, bolder, fuller, slower, sweeter.  Sometimes it’s even boring.  And I treasure the boring, too.  You hold on to what you need, and you move on when you must.  You can reminisce, try to forget, or never remember at all.  But celebrate whenever you can.  Write your own story.

…or, i’m still alive and there’s nothing i want to do.

I’m thinking of earlier, simpler times.  Third or fourth grade.  Before GPS were common place.  Before anyone I knew had been on an airplane.  Before wallets were made out of CTA maps.  Back when you were content not knowing where in the hell you were going.  Then, if you started walking, with no landmarks to guide you, you would eventually walk yourself in a circle.  Not around the world maybe, but a circle none the less.  At least that’s what they told me.  You would eventually start stepping on your own toes.  Crossing your own path.  Getting in your own way.

 

I logged in to this blog tonight to start to say goodbye.  To wrap it up.  The posts are coming few and far between, and its purpose has gotten a little fuzzy.  Two entire months have gone by since I typed anything at all.  That’s gotta be some kind of record or something.  I planned on letting all four of you know that I’m still alive, but that I have to go away for awhile.

 

But I changed my mind.  As far as dealing with a disease I don’t understand, and explaining it to the world, I stand just about where I stood a year ago.  I feel the same, I look the same, I act the same, I know very little more.  I realized I’ve walked in a circle (or shit tons of them, actually) for the last year, and it makes as much sense to keep going as it does to stop.  I couldn’t tell you the last time I tapered down on my medication, and have no good idea when that will happen in the future.  I still fall asleep when not supervised, the left side of my face still feels like it is trying to secede from my head, I still fly into a rage with the least provocation.  Hell, it just might be last year for all I know.  Either way, I fear this excuse for an exercise still has something to prove.  So, for better or worse, in sickness and in health, we forge ahead.  There is work to be done.

breathe some new life

So, this blog was born one year ago today…and almost died in the last month, or so.  I put it on a shelf, waiting to see if it had legs.  And it probably would have stayed there without some outside intervention; this anniversary post is a bit of a happy(?) accident.  A lot has gone down in the last year, and not all of it has any business making it to these pages.  Mostly, I moved (states) and moved on (new job) and moved up (higher plane of consciousness) and moved forward (stopped thinking about a damn blog based on a damn disease everyday).  So this exercise was dying for lack of any desire to maintain it…until the other day when I was straight moved.  I was talking to a guy I talk to most everyday.  We occasionally talk about music or life (a couple of my favorites) but mostly we talk briefly about nothing.  But the other day we discovered out mutual ‘love’ for blogging the medical shit we’re going through.  I had no idea.  He, of course, had no idea.  I immediately went to his blog and was moved by his raw, honest, engaging style and story.  Our journeys to this point have been very different, but I felt a kinship and felt inspired.  And then I remembered that it had been a while since I’d written anything at all.  I decided it was time to fall off the wagon…and it was almost the one year mark since I’d started.  Perfect time to breathe some new life.  So, like Micheal Jordan via fax…I’m back.  Coming at it with fresh eyes, fresh legs, fresh lungs and fresh jokes.  I know all four of you can barely contain yourselves.  Oh yeah, and check out Ryan’s blog…it’s more than worth a look.

…breathe some new life…

so april is sarcoidosis awareness month…

…and I have spent the entire month doing absolutely nothing to celebrate.  Except, of course, having the disease itself.  And living with it.  Certainly not spending everyday of the month laboring over a sarcoid related blog post (remember those days?), or even wasting a few hours everyday doing internet research (sheesh).  I’ve been too busy working, too busy running, too busy talking to my wife, playing with my kids, reading, watching the rain make the grass grow, eating things, listening to things, thinking about things, staring at things, enjoying things.  Too busy to feel sick.  The funny thing about not writing anything sarco related for almost the entire month, is that I didn’t miss it.  I didn’t, in fact, even know that I wasn’t missing anything.  Got it?  See the irony?  I have spent months upon months painfully aware of a disease that I can’t define.  Then, on the verge of Awareness Month, I stop caring and don’t give it a second thought…and, in fact, feel better than ever.  Stupid.  Or awesome.

I told myself years ago that I was going to be healthier at 40 than I’d ever been in my life.  Then I got sick, and shit got in the way.  You can read about the rest somewhere on here.  Well, now I’m looking getting healthy square in the eyes again.  Everyone defines themselves differently than they actually are, and probably differently from time to time.  I am no exception, I am evolving and organic and nearsighted.  I am never the same.  But last week was different…I woke up as something newly new.  I saw a 40 year old vegetarian (looking hard at the business end of vegan), off the sauce, breathing deeply and getting ready to run 10 miles before work.  Recently bearded and bespectacled, now fresh and clean.  Once tired and aging, now up early on a random Saturday.  Ready.  Did I mention breathing deeply?  If you told me two years ago that I had a pulmonary disease, I’d have said you were crazy (wait, that happened)…if you told me one year ago that I’d be running a half marathon with previously mentioned pulmonary disease, I’d have said go #%&@ yourself.  But here we are.  I will celebrate.  And close out the month by running that half marathon.  And I will think about my lungs and my past and my future, and I’ll think about you.  Every step.

Anyway, please use this as my half-assed plea to learn more about Sarcoidosis.  If you’re new to this blog, dig around.  There’s lots of information to get you started.  It may just affect someone you know.  There are still two days left in April..if not now, when?  Me, I’m moving on with my life.