Wednesday, December 30, 2015

Not every post can be uplifting

Ladies and gentlemen, there is no other way to put this: I am losing my hair.

For more than obvious reasons, this is devastating to me.

My hair was the only thing about me that I ever consistently thought was pretty...the only aspect of my appearance that really made me proud.

And now it's falling out in handfulls.

And I don't know why.

As you can see, my scalp is red and irritated. It's itchy or painful often.

The itchy/painful feelings only became apparent to me over the last month or so.

I'm not sure how recently I started balding. The spot is on the back of my head, so it took my hairdresser pointing it out with a big mirror for me to see.

Has this ever happened to you?

Perhaps you can shed some light?

Is this the dysautonomia? The birth control pills? I am presently on antidepressants, a proton pump inhibitor, and birth control...all of which can cause hair loss.

My parents say it's stress - but I don't think stress causes red scalp and scalp pain...

I'm really hurting today, readers.

Really upset.

I can't articulate how much this hurts and scares me...

I guess sometimes a picture (or two) is worth a thousand words?

Monday, December 28, 2015

The 30-Minute Mile

Never in my 34 years of life did I think I'd brag about a 30-minute mile.

Even as an asthmatic kid, I could still fight the blackout with my inhaler long enough to eek out a 12-minute-or-so mile. And hell, up to and until July of this year, even taking my typical, leisured nature walk, I'd average around 18 minutes.

So if you'd told me then - in fifth grade, in the fifth month of this year - that I'd be all bragadocious about a 30-minute mile, I'da toldja you were nuttier than Planter's Pistachios.

And then, there came JULY.

If my Life were a screenplay, the first 34 years would be what is often referred to as Act 1 of the 3-Act structure, wherein we get to know the characters and surroundings - you know, the basics: who is sleeping with whom, who is really so-and-so's long-lost brother, who is secretly a scumbag successfully masquerading as a sweetheart... that kind of thing.

For us screenwriters, it's called establishing the stasis, and, as every good screenwriter knows, into every stasis, a conflict must fall.

Thus, we enter Act 2.


It was at this point in my Life's play, that the "conflict" portion of the plot reared its stasis-shattering head in the form of blood, forced anorexia and a sudden inability to go more than five minutes without sweating, fainting, or otherwise feeling like I was going to fucking die.

Unbeknownst to and unwelcomed by The Lead (me, for those of you bad at theater and script analogies), Dysautonomia entered, stage right... and since then I've been praying for a denuement and Dysautonomia's exit, stage left.

But like all worthwhile adversaries, it seems this fucker just won't leave The Lead alone... which brings me to THE MILE...

Here we are - five months into Act 2 - and the conflict has left me, very literally, weak.

I've lost count of the doctors' visits, medications, hospitalizations, and days spent in the bed, too weak or sick or pained to move.

My 18-minute mile? Likely said, "Sayonara," around month three, but I was too busy being bedbound, writhing in agony to hear her depart.


Not much changed when I received my diagnosis, except that the crippling fear that had gripped me for months now had a name, and a "get cozy 'cause you're gonna have me for life" prognosis. In some ways, this made my life better: I could research this monster and find out how to best wound it. In some ways I was worse: knowing there's no cure for the plague infecting me robbed me of what little hope I'd managed to salvage.


Prior to Dysautonomia, I was a journalist, and, despite this disorder's crippling effects, the standards of that station still persist in me - the tenacity to uncover the truth, the refusal to take no for an answer, the unmitigated gall to put my foot in the door and absolutely refuse to remove it until I have had my say - these things remain.

And they are serving me well.

It typically takes a patient five years to be diagnosed with Dysautonomia.

I was diagnosed in five months.

Because if I had to knock on the door of every damned doctor in Georgia (and Florida, as it turns out), I was gonna be heard. I was gonna be seen. I was gonna be treated. I was gonna improve.

I found my diagnosis on my own, because no local doctor could make heads or tails of what was wrong with me (if they believed anything was wrong at all).

I took what I found to a doctor who'd listen and perform the tests I asked for.

The tests (whose brothers had all come back with negative, you're-perfectly-healthy-now-go-home results) finally started coming back in measurable "positives" - I say finally because finally we were running the right tests.

With the Dysautonomia diagnosis, I began to do what I've always done when I had a story or paper due - I researched.

I got my hands on every piece of credible literature I could find and I read it. And I marked it. And I returned to it for reference.

And in doing so an unexpected thing happened - I got some of my power back.

I got just a modicum of my momentum back.

Dysautonomia had hindered my health, but it hadn't claimed me.

I was - I am - still here.

And dammit, I can walk a mile.


Today, I began to write Act 3.

I took what I had learned from my reading - that exercise, perhaps the most difficult thing in the world for a Dysautonomia sufferer, is a key to feeling better.

Today, nauseated and lightheaded, I climbed on the treadmill in the gym at the Marriott Courtyard in Birmingham, Alabama, and began to walk.

I would make it to 30 minutes, I told myself.

And I know Dysautonomia heard me say it.

My pace was embarrassingly slow, but I was able to select a program that included sporadic use of an incline.

I clenched the bars tightly - to guard against collapse, yes, but also because doing so would allow the machine to monitor my now tachycardic heart.

Slow and steady.

Minute by minute.

I made my 30-minute mile.

Sure, it wasn't what I was used to.

It wasn't what I was capable of even six or seven months ago.

But I'm not the same person I was six or seven months ago.

And that is as it should be.

The Lead must change over the course of the story. She cannot be who she was before Conflict disrupted Stasis. She must be stronger, better, wiser, changed.

Sometimes, she may even need to be broken.

But this time - this story - is not one about the brokenness, the shattering.

As I've told you before (and Buddha said before me), the glass was already broken.

This story, then, is about what I am going to do with the pieces.

And the first thing I am going to do

is walk.

Thursday, December 24, 2015

Get Off Your Ass and DO SOMETHING: A Christmas Wish

While lotsa folks are lovin' on "Jingle Bell Rock" and "Sleigh Ride," my favorite Christmas carols were always those that B98.5 conveniently forgot. Likely because Mariah Carey never did the Olde English "Good King Wincelas" or "I Saw Three Ships," these tunes have fallen from favor.

Some other ne'er played favorites of mine? "The Holly and the Ivy," "I Wonder As I Wander" (This one should be mandatory listening every year), "Oh Come Oh Come Emmanuel" (likewise mandatory), "Here We Come A-Wassailing" (just because it's jaunty), and, perhaps my favorite, "Some Children See Him."

But this year in this particular season, I find myself humming "A-Wassailing" a little less and a lesser-known tune a little more. Perhaps - in fact, I am sure - it's because this not-at-all-jaunty carol boasts a speak-to-me theme: "Let There Be Peace on Earth and Let It Begin With Me."

For those who aren't familiar, the lyrics are these:

Let there be peace on earth and let it begin with me.

Let peace begin with me, let this be the moment, now

With every step I take let this be my solemn vow:

To take each moment and live each moment in peace eternally

Let there be peace on earth and let it begin with me.


Sure, it's preachy and P.C.

And it's certainly no soul-rousing "Hallelujah Chorus."

But while the Lord God Omnipotent surely continues to raineth (as He has done every year), this particular song points out that we, as human beings, haven't really been excelling at our end of the bargain when it comes to upholding The Golden Rule.

Sure, other songs - this one in particular - also call for peace on earth, but they, like so many Miss America hopefuls, only put forward such a possibility as a wish.

"Let There Be Peace on Earth" dares go beyond that. It takes a stand and issues a challenge.

Not only am I gonna wish there was peace on earth, I'm gonna do my part, every freakin' day, to make sure it happens.

So while you carolers and Miss Arizonas are over there wishin', I'm gonna be workin'... and we'll see which process yields more results.

Now I know many of the wishers out there are already doers. Many Miss Americas use their crowns to make some sort of positive difference. But while sparkly crowns may open doors - may make people sit up and listen for a time - it's my impression that this particular holiday, and the peace for which it calls, is less about a sparkly crown than it is about a crown of thorns.

I know, I know...that's throwing Easter into the mix...

But what I am talking about here - and I note the irony of the beginning of this sentence as I type its conclusion - is that talking isn't enough. Wishing isn't enough. We need to be doing.

After all, if Jesus had just talked a good game, but never walked a walk that ended in sacrifice, most among us wouldn't know his name. If it wasn't for the sacrifice, the willingness to go the distance and pay the ultimate price for peace, there'd be no reason to celebrate Christmas in the first place.


Now, as Jew, I know I believe differently than many of you. I have my own thoughts and theories about Yeshua of Nazareth, but, rather than letting those beliefs cloud the issue, I rather think they reinforce my point. About "Let There Be Peace On Earth" anyway.

Because, see, you and I can disagree on many things - Jesus included - but the desire for peace is a shared one. It transcends doctrine, race, sex, and creed.

It's one of the few things the vast majority of humanity can agree on.

And if the vast majority of humanity not only agreed on something but had the balls to act on it...well, then maybe peace on earth wouldn't be such a far-fetched prospect that Anne Murray had to croon some carol for Aladdin's lamp.


I talk a big game.

But here lately I have been castigating myself for my lack of "do."

Sure, I want peace, but what have I done to contribute to it? Write a blog? Pointed you to an obscure carol?

Maybe that counts as doing something. Or trying anyway. But, as another prolific spiritual leader once said, "Do or do not. There is no try."

Friends, I challenge you, during this busy time of year, to reach into your heart and actually find a way, any way, to make the world a better, more peaceful place this Christmas.

And, perhaps I can hearken to a teacher whose words many of you will recognize when I tell myself: "Go, and do likewise."

Friday, December 18, 2015

Not exactly uplifting, that Buddha...

With the exception perhaps of the death of a loved one, nothing will divide your life into "pre" and "post" more prolifically than chronic illness.

Since becoming sick, everything in my life has become "pre"dysautonomia and "post"dysautonomia.

I was a three-mile-a-day walker predysautonomia.

I was a world traveler predysautonomia.

I was an award-winning journalist predysautonomia.



Ummm...I bathed this morning?


Now, postdysautonomia, I often make it through the day by telling myself the usual platitudes - that I just have to make it to the right doctor and then things will get better - that I just have to have the right test for the eureka moment - that any day now I'll wake to find, in Dorothy Gale-fashion, that this was all a dream...

But despite getting by mostly on denial, I have actually come across some thought processes that help me.

The mind is a powerful thing, and, when I can get mine right, I manage to transcend my circumstances and gain some deeper understanding of the universe and my place in it. It's one helluva price to pay for presence of mind - knowing you're likely gonna be sick every day of your life for the rest of your life - but I will say it's been an unexpected (dare I say it?) gift of my illness that it has allowed me to see life in an entirely new way.

And I will share that way with you today.

Buddhism holds, among many things, that life is suffering.

"Life is pain, highness. Anyone who says otherwise is trying to sell you something."

I know. Uplifting, right?

But bear with me here.

Thing is, I had suffering predysautonomia. Lots of it, in fact. It seemed my mind was always on some form of my suffering and how to fix or overcome it.

Whether it was trouble-shooting my wedding or coping with the frustrations of my job or facing my own inadequacies in areas in which I desired to thrive, I had suffering.

And while that suffering pales in comparison to my suffering now, at the time it was sufficient suffering for predysautonomia Erin.

So, in short, life pre? Wasn't all it was cracked up to be. Sure, knowing what I know now, I'd love to go back to pre, but even if I did, there's no way that pre me would or could have understood... Because there are some things only experience can bring.

So - first thing is - there was suffering pre and there will be suffering post. It's true for me, and it's true for everyone. And it's good to keep that in mind.

Second uncomfortable but earth-shattering truth: we were born to die.

Each and every one of us, from the moment of our birth, began to die.

Like our birth date, time, and location, the details for each of us are different, but the end result is the same.

I will die. You will die. We're all gonna die.

So if my dysautonomia gets me to that final destination faster, well, what's the damned difference in the end?

Sure, we'd all prefer to die well-into our twilight years, peaceful, in our sleep, having lived a long, healthy life.

But since being sick I've come to realize that that's the end we all want - nay, it's the one we all expect and the one we're all banking on - and yet so few people meet their end in such a way... it makes "banking on" such an ending a bad investment really.

So live how you can the best you can, because tomorrow isn't promised to anyone.

Which brings me to point three. Also a Buddhist principle: The glass was already broken.

This one has moved mental mountains for me.

To be blunt, we all die, and each of us dies because our body breaks.

Every human being who has ever lived and died has died because their body has broken.


End of story.

Universal truth.

Because this is true, and each of us knows it on some level, we therefore think of our bodies and our lives as I have been - "pre" break and "post" break.

We were complete, healthy and whole...then we're broken, dead and buried.

But friends, this is not so.

Just as we were born dying, we were also born broken.

Wrongly, we view our lives as some sort of beautiful, priceless vase and, when sickness or death comes a-calling, that vase is then shattered, irreparable.

I'm here to tell you - your beautiful Life Vase? Is already broken.

You. have. been. dying. since. the. day. you. were. born.

Your vase, if it ever was pristine, had a fault line in it since birth.

You were not destined for a life of health that was suddenly interrupted.


Your fault line - my fault line - all of our fault lines have always been there.

When I broke to the world (July 2015) - and whenever you break to the world - the fact remains that the glass was already broken.

It just takes the loud noise and the flying of the pieces for most of us to see it.


Two seconds, one second, mere milliseconds before my sister died in a car accident, she was what any of us would call completely healthy.

Young, vibrant, 16-years-old. "She had her whole life ahead of her."

Friends, she didn't.

I don't know why or how or to what purpose, but her glass was always broken, and her time to shatter in a way where we could all bear witness was 7-26-07.

I take no pleasure in saying that.

I do not say it coldly, or even with distance.

When her glass shattered in a way that I could actually see it, I, too, was shattered.

My Life Vase fault line deepened that day.

But the fault line - hers and mine - was already there.


I know that some will not be able to accept this.

I know some will not understand.

I know some will think me cold, or bitter, or spiteful.

But knowing what I now know - seeing what I now see - about the inevitability of the fracturing of this life is actually helping me to cope.

My body broke for the world to see in July 2015.

But it was broken before that.

And that's nobody's fault.

There's no one to blame.

There's no one to curse.

The glass was always broken... and, in accepting that, I can accept me - I can accept me "post." At least for a little while.

Tomorrow - or maybe even in 5 seconds - I will return to my "pre" way of thinking: that this was done to me, that I have been set upon, that my life, which was meant to be X, was cruelly interrupted by Y... but such thinking only builds resentment, frustration, woe.

The glass was always broken. I have not veered from my path.

And though my path is different than yours, the destination is nevertheless the same.

I will meet you there, dear friend, when our predetermined points collide.

Tuesday, December 15, 2015

If I didn't know better...

Here lately - the past 5 months - my mind could often be found wandering the senseless paths that we all, at some point or other, tread: the "if I had a time machine, I'd go back and do ______ differently" trails.

Inevitably, this flight of fancy would deliver us from our present, undesirable circumstance, and magically rewrite the whole life chapter to be nothing but kitties and rainbows.

But my friends, need I remind you - and me - that the rainbow only came after the flood?


I saw a commercial yesterday - bear with me - that really spoke to me. In the commercial, there were two giant boards. One had a sign - "The Past" - at the top; the other's sign read "The Future".

Bystanders on the street were asked to take magnetic words/phrases from a gargantuan pile and place those words/phrases, as they applied to the individual, on the board to which those bystanders felt the words/phrases corresponded.

"Positive" words/phrases were written in yellow; "negative" words/phrases were written in blue. (ie. "Promotion at work" was written in yellow. "Hospitalization" was written in blue.)

Frantically, folks rush to the wall to add words.

When the exercise is over, the Past Board is an even mix of yellow and blue. The Future Board is almost all yellow...

I thought about that for a long time...

Since becoming sick, I've taken a really thorough look at what I wanted for my future. By and large, my desires didn't much deviate from my assumed desires for many of you: a home, a family, a job I love, the ability to travel and see the world.

Indeed, in the realm of "What Erin wants for her life," I felt I'd set the bar squarely at "completely attainable."

But Life, it seems, had other plans.

(Now "bathe myself without fear of collapse" ranks high on my list of "What Erin wants for her life.")


Why is it that, despite our experiences of the past - despite our knowledge that Life delivers good and bad to every individual - that Life is not fair and never will be - do we continue to paint the future with (in this case) a predominantly yellow hue?

Do we all feel we have somehow met our quota of negativity and that Life is therefore preparing to dole out favors aaaaaaany minute now?

That Life remembers those things it did in the past that were wholly unfair and insufferable and that, if we just sit back in our recliner and wait, Life will ring our doorbell with flowers and chocolates and a letter of apology tucked under the wiper of "OUR BRAND NEW CARRRR!"?


Acceptance is the last stage in the grieving process.

Once we're done denying the situation... getting mad at the situation... bargaining with God over the situation... getting depressed and bawling our freaking eyes out over the situation... we finally accept the situation. And it looks something like this: (you're welcome)

And while I cannot say that I, personally, will hang out in the sands of acceptance (that reference will make sense if you watch the video), forever - or even for the rest of the day - I can say that, in this moment, I have come to accept that my future might have a bit more of a blue hue than I'd have liked.

But then again, that was really always the case, wasn't it?

What's changed, really, is not my future... but my concept of what my future should have held.


Therapists tell me "should" is a dangerous word, loaded with expectation that may just be impossible to meet.

I should have lived another 50-some-odd years healthy, happy, and whole.

But that, my friends, is painting The Future Board with positives.

When I look back at my Past Board, I realize Life doesn't work that way.

And I further realize that sometimes these negatives - these terrible experiences that broke my heart and my spirit - eventually worked out in my favor.

Some of those blues made possible the brightest of yellows in my life.

And maybe that's what this is.