Says the Spirit

Driving Adahlia to her preschool this morning… (we typically walk or she rides her bike, and it would’ve been fabulous cool-but-sunny winter weather for that but we’ve been sleeping in and class had already started… not that anyone really cares because there’s not exactly an intense curriculum, but still…)

… she gazes out the windows, first one side, then another.  We’re moving pretty fast.  

“Is it almost nighttime?” She asks.

“No, see the sun there? It’s coming up.  We are headed east.  When we see the sun this way we know it’s morning time.  When it’s close to nighttime it’ll be behind us – that way – and then we know it’s almost night.”

“The sun is going higher and higher?” She asks.

“Yes, it goes all the way over our heads, and makes the day warmer.”

Adahlia is pensive. I take a quick right turn.  We have to go around a big park.

“This place might be crazy!” Adahlia says.  I glance in the rear view and she is looking out the windows, her head on a swivel, taking in trees, buildings, people, buses, and cars. “This place might be Huge!”

I laugh, passing a bus loading up passengers.  “It is pretty crazy! You mean Earth?”

“This place might be HUGE!” Adahlia repeats, raising her arms above her head in a sweeping arm gesture. I make another rolling stop for the next right turn – we’re almost there.

“It is huge, baby,” I affirm.  “There’s so much to see here.”

Blinkers left then right, I slow and arc onto Terry Street.  Our car’s momentum carries up the preschool driveway.  

“I want to live in all these houses,” Adahlia announces.

I open the door, unbuckle her, and help her out of the car.  She looks at the row of craftsman houses, some of which are homes and others have been converted to businesses, like her preschool.

“I want to live in all these houses,” she repeats.

I giggle.  “I know, I enthuse, “there’s so much to experience!”  

I reflect for an instant on this little mirror by my side.  When I was little, not much older than her, I thought it unfair that we had to pick a future.  I wanted to be so many things. I did not want to have to choose, to be locked into anything.  I wanted to experience many careers and lives.  
When I break my reverie, I acknowledge the face value of her words.  “We will live in many houses, love… when we don’t have to do so many blood transfusions, we will travel lots and lots and live in many, many houses.”
Adahlia holds my hand as we walk up the front steps.  “All these houses,” she repeats.

And this time, I allow myself to bask in the depths of the message.

I want to live in all these houses.

We start out unafraid of death, unattached to our particular lives, ready and eager in a state of wonder to live.  To experience. No experience is necessarily better than the others. They are all different, all valuable. All wonderous.  All adventure.

Then, at some point, we identify with the body we live in and the stories it experiences.  At this point, we do one of two (or a combination of) things:  We reject the current body, becoming ashamed or unhappy in it because it has become a storehouse of trauma, or we become too attached to the current body (and life) and lose perspective on the validity and beauty of living and seeing from a different set of eyes.

We become lost in one story, the story of this one lifetime, and lose sight of the possibility, grandeur, and truth of the others, especially when woven all together.

I want to live in all these houses.

Yes, yes I do.

I want to live in all these houses.

So says the Spirit of the Body.

Problems & Solutions

I have a problem.

I have a very scientific brain.

So it still astounds me that my daughter asks for Shonishin. That it immediately calms her. That it changes something in her.

It is nothing more than tapping, stroking, and what we call “magic” (light pressing of certain acupuncture points) with one of two copper tools.

Yet, it changes something in her.

And she asks for it.  Demands it even.

I oblige.  And as I stroke her skin, I wonder:

What is happening?

Yes, I know the theory.  The theories.  Yes, I have been witness to and felt energy movements.  Yes, I know it changes heart rates and respiration and hormones and chemicals and cells.  Yes, I know it’s real.  

Yes, these things still astound me.

I grew up Catholic after all.  Upper middle class. Suburban.  Educated at a prestigious military engineering academy, for Pete’s sake.  Drove an old Mercedes in high school and bought a used, silver Celica in college.  Designed scientific research projects and tested digital interfaces with military applications.

And so I touch one tool to one point, and then bend her leg and touch it to another, and when I stop to dress her because she’s fallen asleep (much like when an adult falls into the “acu zone”) and she wakes and begins to cry and complain, I tap gently along her hairline and temporal lobe with my fingertips this time, not tools, and she’s out again.

What is happening?

Good question indeed. 

What is happening right now, this rise in integrative and functional medicine? This surge in consciousness?  This coming together of warring and opposing viewpoints?

East meets West.

When cold air meets hot air.

Body meets Spirit.

What is happening, indeed, when two beings vie for the same niche? The same body? When the line between self and other begins to blur?  When it is called love in one breath, and self-destruction in the other?

When autoimmune disease is connected to viral invaders and leaky guts and dysbiosis and mutated genetics and brain chemical imbalance?

I have a problem.

Several, actually, but another is that I have a rather poor sense of loyalty.

It’s true. I’ve never been loyal. Fond, yes.  Self-sacrificing, definitely.  But I’m not loyal.  

I’m too pragmatic for loyal.  I am an observer.  Always have been.  And any observer knows that there is much too much to see to ever align oneself with any one or any thing.

I see too much.  But this isn’t to say that I judge harshly.  Or that I’d ever sell anyone out.  (But I might.)  It’s to say that I withhold judgement.  That I understand motivations.  Or to say that I see all of you, including your dirty, selfish, mean parts, and if I choose to be around you anyway, it’s because I like you anyway.  Not because I’m blind.  Not because I’m in your camp.  Not because I’ve drank your Kool-Aid or believe your hype or self-promotion.  I just still like you.   Or I happen to be here with you.  Or there’s no where else I happen to be.

This is a good trait for those who value honesty. For the rest of the world, it makes me rather undesirable.

What I mean by this is that I’ve never been particularly driven to be loyal to someone simply because of who they are: teacher, parent, mentor, sibling, or friend. 

It also means I’m not disloyal either. 

I guess it means I’m not super attached.  I like you. Your opinion is interesting.  I like that person, too.  His opposing opinion is interesting, too.

Can I be hurt?  Sure. Deeply.  By those who I thought cared for me but show by their actions that they don’t or didn’t.  

But I’m not talking loyalty like the steadfast allegiances of love.  I’m talking loyalty like the blind allegiances of clans.

So what do I follow?  What am I loyal to? 

I’m not sure.  Some might call it God.  Or intuition.  Or a feeling.  Or my gut.  But it’s all of those things and none of those things.

Someone says something and it either sounds like truth to me or it doesn’t.  

For lack of a better term, it’s an energy.

That’s what I listen to.  

(Which brings up another problem, because that’s not very scientific.

Or is it?

Depends, perhaps, on your definition.)

East meets West.

One body, how to unify a mind?

So much of the world is blah blah blah, and we could be talking about God and it’s nothing or we could be talking about shoes and it’s divine transmission… It has nothing to do with what’s being said.

It has everything to do with what is being said.

(Yes. I realize I used the same words.)

Because it’s not the style. The style might be fun or amusing or angering or whatever.  But it doesn’t matter.  The substance does.

And I’m not talking about morals or a platform or about preaching.  The substance I’m talking about can’t be pinned down.   

These days, I’m amazed at what’s being said.  

About the herbs my daughter tests positive for.  About this journey we are on.  

I say all this because I’m not loyal to my Chinese herbalist teacher.  I do not blindly follow him.  I test his theories.  In fact, we test them together.  I see that his theories hold.  They are confirmed.  

No, I am not loyal to my teacher.  I see him work.  And what I have seen has caused me to deeply respect him.  I am grateful to him and to existence (God) for placing me in his path.  I would, in return, help him if I could, the way he is helping me to learn, to see.

Because if there is anything important to an observer, it is being able to see.  

I am the watcher.  I’m not in control.  I have little money, little experience, and little sway.   

I do my best.  I come forward.  I administer what I know.  I listen to what comes my way.  I discern, not judge.  It passes through me like a sieve.  I depend on no dogma, no doctrine.  I keep what may be useful.  I keep only what “rings” true.  

I wait and see.  And what I see is amazing.

My problem just may be the solution.

My problem never existed, after all.


Haha! I was wrong!

Not something folks often celebrate, but I just found out that I was premature on stating that Adahlia is not retic’ing.  I hadn’t gotten the reticulocyte results back with her CBC (retics take longer for the lab to process).  But I went ahead and went to press with what we knew, and assumed that since she wasn’t making reticulocytes last month, she wouldn’t be this month either.  In fact, it has been over a year since any baby red blood cells at all were spotted in her blood stream.

But now she has got some!  She’s not making a ton of baby red blood cells, but she IS making them.  

Step 1: stop the destruction.

Step 2: rebuild.

Or, if at all possible, do step one and two simultaneously.  

And make a little dance out of it. 


If you’re following our journey, now is the time!  Send prayers, love, and light to Adahlia’s gorgeous, resilient rivers of bone marrow. 

Thank you!

Step 1: Stop the Destruction

I’ve mentioned it before, but in China, DBA is approached as an autoimmune disorder.  Whenever I describe the disorder’s symptoms, remissions, and treatments to naturopathic and other professional, holistic health care colleagues, they all respond the same way: 

“Whoa,” they say, eyebrows raised.  “Sounds autoimmune to me.”

And I agree.  

Sure, there’s a genetic aspect to DBA.  But there’s a genetic aspect or tendency to most autoimmune disorders.  

And I maintain DBA is triggered by an overburdened, stressed and compromised immune system.

It is, after all, impressive how many DBA babies are born to women going through or just graduated from medical or nursing school (or paramedic training).  Is it autoimmunity as a result of a virus that proliferates wildly during pregnancy, stressing the mother and fetus? Is it a susceptible gene tied to mental/emotional stressors? Why can’t it be either and both?

Those answers aren’t coming in the next few weeks.  Or maybe years.  But I’ve got some good news to report:

Adahlias last transfusion of 2015 was at 8.8 Hb, 5 weeks and 1 day after her previous transfusion. 

Yes, that’s right.  She could have easily gone 6 weeks, but we transfused her because we were going on vacation out of state, and didn’t want her to need a transfusion while out of state.

6 weeks between transfusion is a record for her.

Of course, it could potentially be attributed to a fresher bag of blood.  A slightly larger bag of blood.


Doubtful, when her transfusion previous to that was at 6.6 or 6.8.

Today is Adahlia’s first transfusion of 2016, and she is being transfused at nearly 5 weeks at 8.0 Hb.

Not that impressive? It’s not a jaw dropper, but when you consider that I was uncharacteristically spotty in her medicine compliance (except for the exjade – we protect her organs from iron overload at all cost) her Hb may have been higher, had I been more compliant. We were traveling, it was the holidays, I was tired, excuses, excuses.  

Last week, at 4 weeks, we did a finger-prick test to check her Hb and it was 8.3.  This disappointed me a bit, so I immediately resumed a more dedicated medicine regimen with her.  Even so, I was expecting she’d be around 7.5 today.  Maybe lower.  (Her trend is to drop quickly once she gets below 8.5; in the past she’s dropped down to 6.6 in a week’s time.)

But she was 8.0.

To my knowledge, she’s still not reticing, still not making her own baby blood cells.  But I know she can make blood (she made a normal amount when she was an infant, but it wasn’t enough to prevent need for transfusion).

So what’s happening?

Well, at this point, it’s all educated guesswork based on theory.

But if this disorder is autoimmune at all, then in Chinese and Natural medical approaches to autoimmunity we are at Step One:  Stop the destruction.

We are calming the Spleen.

What do I attribute this to?

In October, I was again uncharacteristic, this time with my Chinese medicine herbalist mentor.  For the first time ever (we’ve been consulting with him since she was approximately 5 month old), Adahlia didn’t require me to assist her as he tested different herbs against her for her reaction.  So I sat on the floor at Adahlias feet, my back against the wall, my head tilted up at the ceiling, and vented.

“We are missing something,” I seethed. 

Then I caught myself. 

“Don’t get me wrong: Adahlia has come a long way.  Her brain is better. Her inflammation is lower.  Her digestion is better. I’m not saying the herbs aren’t doing anything- I know they are.  She’s remarkably bright and healthy for this disorder. The herbs have helped a great deal,” I acknowledged.

I took a breath, regaining focus and momentum.  “But they aren’t doing the one damn thing I want them to do most of all.  We’ve got all these antimicrobial herbs in her system, but are they getting into the marrow? We need to get these formulas into the marrow.  We need to help her build blood.”

I sighed.  My mentor was certainly not the enemy here, if an enemy existed at all.  “We’re missing something,” I repeated, and my tone bordered on a growl. “I know it.”

My mentor remained silent and kept working.  But he had obviously been listening.  Because when he showed me the new formula, he highlighted two new herbs that we had never tried in the seemingly endless potential combinations of herbs.  My jaw dropped. They made sense: no, they were obvious. We hadn’t tried these?

No, he said, shaking his head. While my mentor is an expert in treating autoimmunity, these herbs had never been necessary, never tested positive, for his hundreds of other autoimmune patients.

But then again, he’d never seen DBA before.  

And now here we are. Three months later.  Scoring a solid 8.0+ Hb at 5-6 weeks between transfusions instead of a 6.8 Hb. 

Step one: stop the destruction.

We are onto something.  I’m confident in what we are doing.  And while we may spend a few more months working on stopping destructive processes, I’m excited for the next step, since I’ve recently stumbled across three Chinese herbal formulas specifically used to protect and rebuild the bone marrow during and after chemotherapy and radiation (perhaps the only two destructive processes that can compare to the destructive power of autoimmunity).

Oh, that’s right.  I didn’t specify  Step Two, but you’ve probably figured it out by now: