The Great Divorce

Just finished “The Great Divorce” by CS Lewis again… here are some quotes!

“… (the belief) that mere development or adjustment or refinement will somehow turn evil into good without our being called on for a final and total rejection of anything we should like to retain… this belief I take to be a disastrous error.  You cannot take all luggage with you on all journeys…”

“We live in a world where… every road, after a few miles, forks into two, and each of those into two again, and at each fork you must make a decision.”

“It does not move towards unity, but away from it and the creatures grow further apart as they increase in perfection.  Good, as it ripens, becomes continually more different not only from evil but from other good.”

“I do not think that all who choose wrong roads perish; but their rescue consists in being put back on the right road.”

“I believe, to be sure, that any man who reaches Heaven will find that what he abandoned (even in plucking out his right eye) was precisely nothing: that the kernal of what he was really seeking even in his most depraved wishes will be there, beyond expectation, waiting for him…”

“nothing in the past can be altered.”

“They won’t like it at a all when we get there, and they’d really be much more comfortable at home.  It’s different for you and me.”

“Capitalism did not merely enslave the workers, it also vitiated taste and vulgarised intellect.”

“What’s the trouble with this place?  Not that people are quarrelsome – that’s only human nature and was always the same even on earth.  The trouble is they have no Needs.  You get everything you want (not very good quality, of course) just by imagining it.  That’s why it never costs any trouble to move to another street or build another house.  In other words, there’s no proper economic basis for any community life.  It’s scarcity that enables a society to exist.”

“What’s the sense of allowing all that riff-raff to float about here all day?  Look at them.  They’re not enjoying it.  They’d be far happier at home.  They don’t even know what to do.”

“Everything here is for the asking and nothing can be bought.”

“You weren’t a decent man and you didn’t do your best.  We none of us were and we none of us did.  Lord bless you, it doesn’t matter.  There is no need to go into it all now.”

“Do you really think there are no sins of intellect?… There is hide-bound prejudice, and intellectual dishonesty, and timidity, and stagnation… The beliefs are sincere in the sense that they do occur as psychological events in the man’s mind.  If that’s what you mean by sincerity they are sincere, and so were ours.  But errors which are sincere in that sense are not innocent.”

“There was a time when you asked questions because you wanted answers, and were glad when you had found them.  Become that child again: even now.”

“You’re going in the wrong direction.  It’s back there – to the mountains – you need to go.  You can lean on me all the way.  I can’t absolutely carry you, but you need have almost no weight on your own feet: and it will hurt less at every step.”

“What are we born for?  For infinite happiness… you can step out into it at any moment.”

“Don’t you remember on earth – there were things too hot to touch with your finger but you could drink them all right?  Shame is like that.  If you will accept it – if you will drink the cup to the bottom – you will find it very nourishing: but try to do anything else with it and it scalds.”

“It depends on the way ye’re using the words.  If they leave that grey town behind, it will not have been Hell.”

“ye cannot in your present state understand eternity.”

“Both processes begin even before death.  The good man’s past begins to change so that his forgiven sins and remembered sorrows take on the quality of Heaven.  The bad man’s past already conforms to his badness and is filled only with dreariness.”

“Hell is a state of mind – ye never said a truer word.  And every state of mind, left to itself, every shutting up of the creature within the dungeon of its own min d- is, in the end, Hell.  But Heaven is not a state of mind.  Heaven is reality itself. All that is fully real is Heavenly.”

“There is always something they insist on keeping, even at the price of misery.  There is always something they prefer to joy – that is, to reality.”

“Every one of us lives only to journey further and further into the mountains.  Every one of us has interrupted that journey and retraced immeasurable distances to come down today on the mere chance of saving some Ghosts.”

“There are only two kinds of people in the end: those who say to God, “Thy will be done,” and those to whom God says, “thy will be done.”  All that are in Hell, choose it.  Without that self-choice there could be no Hell.  No soul that seriously and constantly desires joy will ever miss it.  Those who seek find.  To those who knock, it is opened.”

“That is what she once was.  That is maybe what she still is.  If so, she certainly will be cured.  But the whole question is whether she is now a grumbler.  The question is whether she is a grumbler, or only a grumble.  If there is a real woman – even the least trace of one – still there inside the grumbling, it can be brought to life again.  If there’s one wee spark under all those ashes, we’ll blow it till the whole pile is red and clear.  But if there’s nothing but ashes we’ll not go on blowing them in our own eyes forever.  They must be swept up.”

“They repelled every attempt to teach them, and when they found that nobody listened to them they went back, one by one, to the bus.”

“For to be afraid of oneself is the last horror.”

“Those that hate goodness are sometimes nearer than those that know nothing at all and think they have it already.”

“I have asked you to forgive me.  What we called love down there was mostly the craving to be loved.  In the main I loved you for my own sake: because I needed you.”

“I am full now, not empty.  I am in Love Himself, not lonely.  Strong, not weak.  You shall be the same.  Come and see.  We shall have no need for one another now: we can begin to love truly.”

“Stop it at once… Using pity, other people’s pity, in the wrong way. We have all done it a bit on earth, you know.  Pity was meant to be a spur that drives joy to help misery.  But it can be used the wrong way round.  It can be used for a kind of blackmailing.  Those who choose misery can hold joy up to ransom, by pity.  You see, I know now.  Even as a child you did it.  Instead of saying you were sorry, you went and sulked in the attic… because you knew that sooner or later one of your sisters would say, “I can’t bear to think of him sitting up there alone, crying.”  You used your pity to blackmail them.”

“Our light can swallow up your darkness: but your darkness cannot now infect our light.  No, no, no.  Come to us.  We will not go to you.  Can you really have thought that love and joy would always be at the mercy of frowns and sighs? Did you not know they were stronger than their opposites?…  you cannot bring Hell into me… I am in Love, and out of it I will not go.”

“The demand of the loveless and the self-imprisoned that they should be allowed to blackmail the universe: that till they consent to be happy (on their own terms) no one else shall taste joy: that theirs should be the final power; that Hell should be able to veto Heaven.”

“Either the day must come when joy prevails and all the makers of misery are no longer able to infect it: or else for ever and ever the makers of misery can destroy in others the happiness they reject for themselves.”

Blogging in Braille

Anytime I fly somewhere, my boarding pass has a place that says DEAF on it. I don’t know how I got on the grid as the Deaf passenger, and I know other friends who have been Deaf their entire lives – even with no oral skills or desire to communicate any way other than through sign language – and their tickets have never said Deaf. I don’t know how it got on mine, but it is always there.

This is helpful because it makes it easy to ask for help. I rarely need it, but there are times with sudden gate changes or such, when you realize your whole waiting area just got up and started moving down the hall like a herd of cattle. You don’t know why they are leaving the gate everyone has been waiting on, but you know they are moving to some voice overhead that you cannot hear. In those times, it is helpful to have a ticket that says Deaf and get extra help knowing where to go and why.

It is also helpful because it means all airlines, except one, take the time to hand me the pictorial guide of what to do in an emergency on the plane. I don’t really need them to hand it to me, because it is always right there in the seat back pocket. But it is sweet of them to take the extra moment in their busy flight preparations to make sure I am okay and that I understand. I always thank them very kindly, just to encourage them to be so very nice to the next Deaf person… because maybe it will be their first flight, and they might want to know how to turn their seat into a floating device.

But it isn’t always helpful. There is one airline, which I will not mention at this time, that consistently messes it up. So consistently, as in every time – EVERY TIME – every time I ride that one particular airline, they mess up so exactly in the same way that it makes me think they must be trained this way, which means someone has really botched up their training. Seriously botched up their training. This is the airline, as I have blogged (including pictures, as proof of the ridiculous-ness) before when it has happened… this is the airline that gives me the safety information card in Braille.

While I honor and respect Braille, and even studied it as a child in my mother’s libraries, and while I even know so much of it as to be able to recognize a few letters here and there and a few short-cut-code-words, and even know about the different styles and types of braille, and always feel the letters and numbers on the elevator buttons or the hospital signs… as a general rule, braille doesn’t do a lot for Deaf people.

But this one airline, every single time I fly with them, they give me the Braille version of the safety card.

I am glad – even proud – that disability awareness has come so far that the airlines have the safety card in braille. That’s great. It really is.

But it doesn’t do any good for Deaf people.

We like the pretty pictures that are already there in the seat back pocket.

Many Deaf people would really be offended if the airline gave them the braille version, and throw quite a fit – even file some complaints. They would have every right to do so.

I just think it’s ridiculous. I don’t mind the braille card, and it is interesting to see and hold and touch, and sometimes when they just drop it off with me and leave it with me for the whole flight, then it is fun to play with and see how many letters I can figure out and practice the tiny bits of what I remember. It gives me and whoever is sitting next to me a good laugh, and I get an opportunity to share a little disability awareness with my seat partner – educating both about blindness and deafness, and clarifying how most Deaf people don’t need the braille card… which usually leads to a great conversation about blind-deaf people, and I hope in some way I get to change the world a tiny bit through more accurate education. We all learn a little, and we are more aware and more sensitive and more understanding by the time we get off the plane.

Excepting the few times the stewardess has stood there and refused to leave and refused to allow the plane to take off until my fingers had gone over every dot on the page. She didn’t care what I was trying to explain about Deaf people not needing the braille safety card, and she didn’t care about me explaining my language or what I myself voted for as to what I needed. She was just following her rules, without listening to me, and forcing her system on me whether it was helpful or not.

It’s like when I blog something in French or Swahili or Italian or some other language, or when I write about church things. It may not make any sense at all to some of my readers. My patient friends who know me well might enjoy it for the experience, or the cultural exposure, or the historical context, or the appreciation of what is important to me even though it is not part of their life. Other friends may have no need for it, and skip right over it, knowing that sooner or later I will write some silly thing, or some wordy thing, or blog a more fun picture, or whatever they like better. And that’s okay.

There are no friendship requirements for blog-reading.

The blog does not define friendship.

My friends are my friends because we are friends “in real life”, not because of the blog. The blog is just a place, a way, for me to express myself, to practice writing. It is a way for me to write because I need to write like I need to breathe. It is a place for me to journal, to track the unfolding of my life, to document my experiences scrapbook-style, so that I can come back to them later.

Some of my friends read my blog, and some do not. That is okay, too. Some people read my blog but never talk to me in real life, and others read it whom I have never met. A few comment on the blog, many email me privately in response to blogs, some talk to me about them later, and some read but never respond.

It’s up to them. I am not the stewardess forcing a reader to feel every dot on the braille card, and then be held accountable for something in another language. But in Emily World, you never know what might get thrown into the mix, on this adventure for the search of truth, in effort to experience life for all it has to offer.

My blog, over time, has been its own unfolding that has reflected the unfolding of my life. I love that.

I think what I have learned most, in my search for the Truth and for to experience life so fully, is that I have had to redefine both Truth and Life.

I have learned that Life always begets more of itself, and anything that takes away is not life-ness.

I have learned that Truth always sheds light, and anything that brings darkness (or takes away from or limits knowledge) is not truth-ness.

I have learned that you cannot create Life or Truth, if you drown people in braille cards. You can show, and expose, and educate. But you cannot command or force or oppress.

Life and Truth are always invitations.

That is what I have learned since my first blog, back in 2003.

This week celebrates my 8th year blogging!

It has been eight years of writing to find me by expressing me, eight years of the journey that defines Emily World.

This is the second year that I feel like my original questions (about who I am, how to be me, and what this life is meant to be) have been answered, and that living now is about the unfolding of the layers of those answers.

I love that the answers came in year seven. That’s just fun.

This is year two of having the answers, and learning to live in tune with them.

It’s the tuning in that makes all the difference.

Any in-congruence, any dissonance, anything that causes static… is me working against, or away from, myself.

And working against myself, or pulling away from myself, always is destructive instead of “life-giving and strengthening”.

And when I am not life-giving, in the verb sense, when I am not creating, then I am destroying.

And there was so much destruction.

I was so far away from me that it took seven years to find me, and it took the entirety of that seventh year to “coax my spirit back” as they say in South Africa.

Since then, I have found that what I need to do to take care of me, to be the me I was created to be, is actually so very simple despite how complicated we try to make it and despite the distractions thrown at us constantly.

I wrote a few months ago:

When I am very tired,
I still write, as if to hold on to my own survival.
But my writings then are dry recitations of events
knotting together dots of time.

And I know that this is usually a symptom of destroying, instead of creating, or a red-flag that I am not nourishing myself (usually that I need rest or play).

And I know that anytime I am destroying instead of creating, this pushes me away from myself and outside of God.

It pulls me apart, instead of gathering me together at-one (the atonement is at-one-ness, the embrace of the prodigal son and his father, the integration of selves, the agreement of id and ego, the becoming at-one with God).

This pulling-apart is always destructive to me, always leads to some form of bondage.

I do not want to go back there.

I know the life from which I have been rescued, and I do not want to go back there.

I know the destruction I caused back then, and I dare not cause further damage.

I have just coaxed my spirit back to me, and I dare not look back.

It’s how Orpheus lost his wife.  There’s a Valentine’s story for you.

Orpheus was a real person, so everyone thinks except for Aristotle.  Plato wrote of him, Virgil wrote of him, all the earliest writers included him in their tales.

Like the waters of Noah, every culture in every part of the world includes some version of his story.

The ancient Greeks called him Orpheus.  In Japan, he is called Izanagi, in the Sumerian version it is the story of Inanna, to the Mayans he is Ix Chel.  Native Americans know him as Coyote.

He is the archetype of music, and a charmer at that.  He loved his wife more than anything.  Everyone agrees on that much.

The myth part of his story comes in when you read the different versions of the story about what happened to his wife.

She died, and each part of the world has a different version as to how or why she died, but then the story says he went after her.  He played his music to charm the underworld into letting her come back to life, and they agreed.  The only condition was that she had to follow him back, and neither of them could look back until they both had escaped the underworld.

And so he led her, one step at a time, all the way back to life.  He was so excited and relieved to have escaped – and rescued her – from the underworld that he turned around in his excitement… forgetting the agreement was that she, too, must reach the top before they could turn around.  He had turned around soon as he reached the top, but because she was following him, she had not yet reached the top.  He turned to embrace her, and she vanished.

Here is the beautiful music of his story, this piece composed in 1762:

Now THAT is a love song, to give such comfort to a spouse while helping each other escape the underworld.

That is a lot of love, to put out such fear and to ignore such danger and to focus only on each other and helping each other to the top, to help each other back to life again.

The story of Orpheus reminds me of the story of Lot’s wife.

There are times to look back and to see how far you have come and to recognize your progress and to appreciate the unfolding of what has brought you forward thus far.

Progress is good and right and should be celebrated.

Any moving forward-ness means you are creating your life, and that is to be commended and honored for the progress that it is, even the tiniest baby steps.

But there is another kind of looking back that is not helpful, or even dangerous.  It is a more wistful looking back.  It is the kind of looking back that halts your progress forward.

It is the kind of looking back that stops you from moving forward.

It is the holding on to what is yours, despite being told it is dangerous and to leave it behind.  It is like when Rachel stole her father’s idols instead of trusting she would be well and safe and provided for, holding on to the past instead of embracing her new life.  She wasn’t happy in her marriage until she trusted him, trusted God, thinking that somehow holding on to the past would keep her safe, that keeping secrets would give her a backup plan, that holding on to what was (the past) would help define her future (instead of letting the future planned for her unfold).

Many years ago, my friend Laura – who now lives in Colorado with her sweet husband – my original and only friend that I have had since the very first days I ran away from home and off to college – introduced me to the Irish song Caledonia, and I think it has been the theme of all these years of blogging, a symbol of the journey I have lived – with all its ups and downs, with all its amazing memories and deepest of pains, with all the harsh realities of growing up and the healing balm that has come since.   For me, it was a song that was very hard work and expressed the deep grief of letting go of trauma-drama and the destruction I had caused, and finding my way back home again.

Here are the lyrics:

I don’t know if you can see
the changes that have come over me
in these last few days I’ve been afraid
that I might drift away
I’ve been telling old stories, singing songs

that make me think about where I came from
and that’s the reason why I seem so far away today

Let me tell you that I love you
that I think about you all the time
Caledonia, you’re calling me
and now I’m going home.
If I should become a stranger
know that it would make me more than sad
Caledonia has been everything I’ve ever had.

I have moved and have kept on moving
proved the points that needed proving
lost the friends that needed losing
found others on the way.
I have kissed the ladies and left them crying
stolen dreams, yes, there’s no denying
I have traveled hard, sometimes with conscience flying
somewhere with the wind.

Let me tell you that I love you
that I think about you all the time
Caledonia, you’re calling me
and now I’m going home.
If I should become a stranger
know that it would make me more than sad
Caledonia has been everything I’ve ever had.

Now I’m sitting here before the fire
the empty room, the forest choir
flames that couldn’t get any higher
they’ve withered, now they’ve gone
but I’m stead thinking, my way is clear
And I know what I will do tomorrow
when the hands have shaken and the kisses flowed
well, I will disappear

Let me tell you that I love you
that I think about you all the time
Caledonia, you’re calling me
and now I’m going home.
If I should become a stranger
know that it would make me more than sad
Caledonia has been everything I’ve ever had.

I think I knew eight years ago that I had to say goodbye to the world I was living in.  I had entered that world because I had run away from another world, and I couldn’t be what that world needed me to be.  Much of it was very good, and helped me along the way.  Much of it was not.

When I ran away from home at 17, I had to leave because I could no longer save the world.  I had tried my whole life, and in desperation those last two years had gone as mad-Jesus as I could, as if I could force things to right themselves, as if I could keep the plane from taking off until everyone had read the braille safety card.  What broke me, what crushed my spirit, was nothing my family did to me.  The breaking point was realizing that I couldn’t MAKE it happen.  The breaking point was realizing that singing songs couldn’t force other people to be happy, and quoting Bible verses didn’t make other people want to go to church, and my smiling chipper self no longer made people get out of bed in the mornings.

I had thought that was my job.

Since I was a baby in my crib, that was my job.

I smiled, and it made the day start.  It made my mother happy, it made my father happy, and it made my brother happy.  It’s what I did.

It was my job.

But then, my father was gone.

Then my brother grew up and had real life teenage stuff to sort out, just like the rest of us.

Then my mother got ovarian cancer, only nobody knew it yet.

Smiling didn’t help any more.

Smiling didn’t save the world.

That was the only job I had, and it no longer saved the day.

I thought I had failed.

This is all over-simplification, of course, but it is why I ran away.

I could no longer save the world.  I didn’t have the answers anymore.  What I had to offer was no longer useful.  Who I had been, my whole life, was no longer needed (not that I was not needed, I know that now, but at the time what we needed was more than simple smiles) and life’s problems were bigger than what I could resolve or relieve or help.  Not only had I failed, but in this role-ish kind of way, I had ceased to exist.  It was like the Nothing was eating me away.

And so I left.

I had to leave, to survive.

I had to leave, to find the answers.

I had to leave, to find help.

Except all this was in my own teenage head, and so I know it is a God thing I even survived these years.

And because I left – really still only a child – what I found was danger, not answers.

I was Gretel, and birds ate my breadcrumbs.  I could not find my way home again.  I never intended on going so far away, of losing my way, of not finding my way home.

Because I was not with my family, and because I was in a place of not believing I existed, I let other people define me and bounced from one substitute family to another – all of whom wanted something from me when I was already in a place of having nothing left to give.

I wanted help and answers, but had to find them through layers of dung.

It’s no wonder that we all caused so much damage to each other.  I could not be what they needed, and no substitute can replace what should have been or what was meant to be.  It was a sad mess.  I needed to grieve what had been, and what was not.  I needed to deal with the past and move on, not keep digging it open and trying to find ways to re-create it… with each recreation being far more damaging than the last.

This is how I nearly turned to salt, like Lot’s wife.  I forgot that I had gone in search of answers, and instead kept trying to recreate a childhood that no longer existed.  Instead of getting help for now, I got lost in looking back.  Instead of finding answers, I got tangled in other problems. Instead of saving the day, I became the problem.

Writing, I think, helped me find my way out.  Writing helped me gather bits of truth I found along the way, and these bits of truth became my breadcrumbs.  I had wandered far, but slowly found my way.  Each truth led me to the next one, each breadcrumb fed me just enough to be able to find the next. This was my journey home.

As each truth fed me, it brought me life.

As I began to be nourished, one breadcrumb at a time, one friend at a time, one truth at a time, I began to exist.  I began to learn to love and to be loved.  I learned what gave life and what destroyed it.  I learned what strengthened me and what grieved me.  I learned what brought me air, and what stole it.  I learned what freed me to be me, and what oppressed me.  I learned the difference between the damaging nature of secrets, and the empowering nature of the sacred.

I learned that the mad-Jesus of my youth was a perverted invention of man, twisting truths into something else that was not of God.

God is love.

And it was Love that tutored me, ever so patiently, despite myself.

I learned who I was, and who I was not.

I learned who I am, and who I am not.

And Love showed me the way home.

My mother was there.  Not just there, but waiting.

Like the prodigal father, she saw me coming home from a long way off, while I was still far away.

Once I was home, my brother came to see for himself, but then he also welcomed me home.

For me, that was a moment of atonement, a moment of at-one-ment, the night my brother and I talked all the way on a long drive home and then into the late hours on the porch, the moment when we cried and hugged and something bigger than us made us friends again, and gave us the answers we had searched for since we were children.

This is what came of eight years of writing, no matter what was published or not, no matter what was presented in some fancy workshop or not.  Writing brought me home.

I have written my whole life, keeping a journal since the time I was young.  I have bits of these from when I was in first and second grade, though ALL of my journals from second grade through college were lost when I stored them at a piano teacher’s house (she threw them away, long story).  Those are my lost pages, but still I write… though my writing has changed, as I have learned to hold some things sacred.

Because not everybody knows braille.

Today is significant to me in many ways.  It is 16 years since I ran away from home.  It is eight years since starting to blog.  It is one year since really, fully, finding my way home.

16 years.  It is as if I needed two sets of “perfecting”, eight years each, to find my way out.  I needed eight years of wandering to discover I still had a voice, and another eight years of practicing that voice to discover who I was and what I wanted to say.

Never have I said anything in brevity.

Next week I will be 34 years old.  It is the first birthday that has felt “old” to me.  No birthday has bothered me before, but this one is different.  I have grown, somehow.  The last year was spent living, not running away.  The last year was spent being, not reconstructing.  The last year was spent becoming, not remembering (in a Lot’s wife kind of way).

Gordon B. Hinckley said, “We are the product of lives who have touched ours.”  I love this quote, because I feel so many that I loved and that loved me brought me to this point of life-ness.  Even when I did not want to be fed, they fed me.  Even when I did not know how to be led, they led me.  Even when I was very lost, they were kind to me.  Many I had to leave because I was on a journey home, though I didn’t always know it, but I knew to stay in the forest would deprive me of the light and running water of the clearing.  Some people or experiences were outright destructive to me, and I learned how to hold my own, to stand my ground, to define me by who I knew I was and not by what others said or by what happened to me.  These lessons were as valuable as the rest.

What I learned was that home was not some fairytale place in a clearing.

Home was creating my own clearing in the forest, finding my own stream of water, clearing the brush enough to let sunlight through, and filling my walls with bookshelves.

Inside, there is stillness.
Inside, there is peace.
Inside, there is light.

What I learned is that God is Love, and Truth, and Light.

From my journal, before Christmas, before the last surgery:

There is something real about Him, something more than what I have known thus far. He unfolds who He is, this mystery of Being. When I am broken and humbled, when my Lord atones for me so that I am safely covered, when His Spirit makes me pure again, it is in that smallest moment that pulls me close to Him, that unites me with Him, as if I could feel His presence on my skin beyond seeing its whiteness with my eyes. There is this at-one-ness that is as physical as it is spiritual, as if I can see the very math of both priesthoods united in one equation, in one movement of Light.

When I study and study, diving in layer after layer, and wait and pray and ponder, when I ask and pray and look for more, it is then that I find that stillness in the middle. The power of it pushes the storm further away, creating space around me, space that fills with Light from above. When the light comes, He teaches me the same again for it is what I need to know, over and over, because I am so weak and miserable without Him, without His power, without His Spirit. But always, there is more. Time stretches as it unfolds like a scroll, the walls of the storm around me becoming like screens upon which the whole world plays, and I know that I am in a place between time and space. I am tutored then, in what I need to know. Some things, which I have asked, He does confirm and teach me more, granting layers and layers until their is substance to what was only an idea or question. Other things He does deny, correcting me and expounding upon the truth of things, not letting any piece of it vary from how He has said it to be. Sometimes there are people to meet and lessons to take. I cannot speak of these things, not even to write them to myself. All of it is in the other language, which I write down notes of as I remember them, a few words a time granted to me for remembering, for earning it is the proving ground, and helps me treasure them and become more than I was. Other things are more physical, not just ideas, but worlds on the poles and cities in the skies, even now, where physical eyes cannot see, but already they are there, still they are here. Other things are tasks which must be done, and sins that must be prevented for the destruction I would cause. This is not just any world of everyday life, but it is – truly – His world, which He has created for the purpose of even my life to become who He wants me to become, to accomplish some tasks for Him… and this is not to be mocked, not to be taken for granted, not to be wasted.

Any time in this state does make it painful to return, this same squeezing my spirit back into my body as after the illnesses and surgeries of the past. He touches my heart, and He touches my head, that my body can continue for it has already fought beyond what is possible. My body would be finished already were it not for His gift of time, of life. And so the pain of squeezing back into this body does make the pain of my healing head compare to nothing, and I know it heals because He has touched me. And I know He has touched me, because there is work for me to do still yet.

Days and weeks and months and years away are only half a day, and I feel now as if to move through molasses.

Yet what I want to write slips through my fingers like water, and I wonder at the responsibility of my own tiny life, barely anything, and how I will endure yet more (except what easy battles I have had) – and I wonder even of how to remain worthy of His help, which I desperately need, for without Him I can accomplish nothing. I am just a girl, but yet He has called me to be a light.

I can still smile.  Smiling is still my job.  There is still purpose in my existence.

Like a candle on the table, He said, which I just read in 3 Nephi, and reminds me of the New Testament. Do not hide the words, or stop, but share them boldly. Wake them up, fill them with light.

I know that I cannot do this, and I know I do not know how to do this. But I do know that I can stand firmly in the middle of the storm, and that I can hold the storm at bay, by His power, and that I can kneel and pray open an ever widening circle, where His Light and Spirit may come, and that this Light, by His Spirit, can wake them up and help them to see again, to remember, to find their way back to the Light.

But they must look UP, at Him, not me.

This is what will help them keep walking along the rod, to keep moving forward, because we are so close to the Tree.  So close.

Maybe that reads like Braille to you.  That’s okay.  It was for me.

But to you, I say thank you.  Thank you for reading, thank you for being a part of this eight year (or some of you, sixteen years or more) journey of writing.  Thank you for walking alongside me, or before me, or pushing me from behind, or just participating in the sharing of this journey, the adventures of Emily World (despite website problems and changes along the way, and in spite of blogs longer than this one).  Thank you for being breadcrumbs to me, thank you for nourishing me, thank you for giving me life.

For I am, truly, very glad to be alive.

I am glad to be home.

These Are the Words We Dimly Hear

God speaks to each of us as he makes us,
then walks with us silently out of the night.

These are the words we dimly hear:

You, sent out beyond your recall,
go to the limits of your longing.
Embody me.

Flare up like flame
and make big shadows I can move in.

Let everything happen to you: beauty and terror.
Just keep going.  No feeling is final.
Don’t let yourself lose me.

Nearby is the country they call life.
You will know it by its seriousness.

Give me your hand.

~ Rilke
(the German poet, not the puppy)

Repost by Request: The Symphony

When I finished Christmas with my family, and they were on to other things, and there was no stalling left to do as they all went along their way, I said a precious goodbye to my baby puppies and started driving home.

Before I got very far, I received a message that my little (now grown-up and professional) friend Whitney Campbell got a an extra free ticket to the PROFESSIONAL symphony she was playing in last night!  Since I was still close to where it was anyway, I just turned my car around and met the Campbell family there for Whitney’s concert.

It was the Arkansas Philharmonic Orchestra, a professional group in Northwest Arkansas.  This means Whitney is professional and everything!  She got paid!  She was ASKED to be in the orchestra, and was the only Bass Clarinet they had, and so she had tons of solos!  I was so proud of her! They performed in Bentonville, the ritzy cultural center of the home offices of Wal-Mart and JB Hunt and all kinds of gazabillionarie-ness-ness.



The first part included several classic Christmas pieces, including arrangements with a hand bell choir.  It was so beautiful that I wept.  I cried and cried and cried.

I cannot explain, do not know how to explain the layers of sound that I heard.  As soon as I discovered one sound, something else was already happening.  It was like flying through a rainbow while being thrown into the sea, all at once.  It was music-tastic.

The bells are still the most distinct sound I am able to hear, the most clear and crisp, like the flash of a camera.

But the other pieces of the orchestra – the sounds of a band are still blurry to me – just beyond what I can capture, but so close – but this orchestra last night, oh!  It was like voices in a conversation, different instruments talking back and forth to one another, and yet so subtle.  The voices of the orchestra were pure and soft and lingering, beyond any Jane Austen imagination, so… romantic, but sacred.

It was, by far, the most powerful experience I have had outside of the Temple.

It was, absolutely, one of the most sacred experiences of my life.

And when I closed my eyes, I could still hear it.  The sound was still there!

That is when I began to cry.

I do not understand how sound can become like the slip of silky sheets or the melting of sweet chocolate.  I do not understand how that sound up on the stage becomes as close and sweet as a kiss inside of me.  I do not understand how it got from there to here.  I mean, I understand the physics of it.  I could draw it on paper.  I have always know that.  But I have never known THIS.

I kept reaching toward my head, almost unconsciously, for because the music was so tangible to me.  I have never experienced anything like it, and before music has been accessible to me only on paper – in some silent, visual, mathematical dance behind my eyes, or through touch – with different sounds familiar to me based on where and how I felt them in my body.  But this was an entirely different dimension, and entirely different experience.  This was music that flowed into me and over me and through me, like a river that was only mist, like a vision no one else can see.  It was so TANGIBLE, and my hand, without me realizing it, kept reaching up to touch it, as if it were an object near my head that I could catch, as if it were a magic bubble I might be able to touch.

But I could not touch it, and yet it was that real.

I sat in a chair to LISTEN to music I have read and studied and known on paper, and yet it came alive as much as if a real person had stepped out of a fairytale book.  The notes I have known on paper became 3D, changing from black and white dots to the color of sound.  I was in awe, and it poured over me like waves.

This was our favorite last night, Stille Nacht, by Franz Gruber, as arranged by Davis & Custer, except instead of the voices it was a cello.  I have always loved cello because that is a sound that I can feel in the deepest parts of me, beyond my bones.  Yet to hear that sound, the depth of its haunting, it was as the voice of God.

The more lively, quick pieces were just as astounding.  Hearing specific notes, distinct pitches, noticing the spaces between notes – I could not even breathe!  I was so moved and caught up!  I have been practicing my “music program” on my processor, and listening to Christmas music as they told me to do.  So I have been proud of my progress of becoming familiar (digitally!) with Christmas songs and trying to hear and understand and learn the words of the songs… but to listen to these songs, pieces I know as one voice or one instrument holding the melody, become a 60 piece orchestra, with the melody dancing around different voices – it was like a ballet of sound!  It was as if there need be no ballet, for the melody itself was the dancer!  I cannot explain how incredible this was, and what a miracle to follow the melody around from voice to voice!

It was way better than Baa Baa Black Sheep on “Sound and Way Beyond“.

Except you know what?  Without the hours and hours everyday of listening rehab, without learning to tell the difference between Baa Baa Black Sheep and Happy Birthday, without studying each note of the scale, without studying the sounds of different instruments, without all those months of painful daily practice, I never ever would have experienced the symphony the way I did last night.

It was a miracle that totally topped snap, crackle, and pop.

The second half featured selections from “The Nutcracker”.  Excepting instead of just playing the classical pieces by Tchaikovsky, they played each selection the classical way, and then a jazz band played the Duke Ellington version!  It was incredible!  What a gift to me, to hear professionals play the same classic pieces in two different ways, so I could learn what the differences were!  It was AMAZING!

I loved it because the jazz band kept featuring different solos, which the orchestra also did, except in jazz band, it was a small band instead of a large orchestra, and when they played a solo, they stood up!  So I knew who was playing the solo!  And I could really, really watch and listen to that specific instrument!  It was incredible!  Again, it was way better than “Sound and Way Beyond”, of listening to which instrument is which.  Except without that practice, I never would have understood what was happening with the jazz band!

The band is still more “blurry” a sound to me, and they played so much so fast that I really could not listen that fast.  I tried hard!  But it was so much so fast, I just couldn’t catch it like I could the long, vibrating sounds of the orchestra.  But it was delightful, and it did make me bounce.  And it just makes me want to practice more.

I think I could hear the trumpets and the soprano sax the best, though both played so many notes I could not keep up.  But what fun it was!  What a chasing adventure it was!

Oh!  The whole evening did fill my soul and lift my spirits!  The sounds I heard are too new for me to hold – they have slipped beyond me already, for they are too fresh and too misty for me to be able to hold them in my memory.  Isn’t that a funny thing?  But oh!  I remember the experience of it!  And the experience itself is impressed upon my senses, like seeing stars after looking at the sun too long.

It was a miracle to me, a most amazing experience.

It was not about hearing.  I have studied music always, and have loved the feel and experience of all kinds of music, for always.  I really have.  But this was different than anything before, this was access like never before, this was a whole new dimension.  I was not even on planet Earth.

The symphony last night made every bit of the cochlear implant process worth it.  From the physical recovery to the HOURS of DAILY practice and listening rehab, to the private speech instructors, to wearing the stupid microphone for six months… Even the staples.  Even the staples, that’s how serious I am.

It was worth it.

And it made me want more.

It stirred passions within me, and made me hungry for more.

Selfish perhaps, yes.

Or maybe it was just the very gift I needed to be ready for surgery on Wednesday, to be ready to go through this one more time for the other ear, and then to do the work to make both sides work together into one sound.

It will be like 3D technicolor HD AMAZINGness.

It will be stereo.

Can you imagine the symphony in stereo?

Can you imagine that music pouring into your soul from both sides?

I might melt to the floor.

Next year.  Next year it’s a date with the symphony.

Ralph Waldo Emerson

“That which we persist in doing becomes easier for us to do; not that
the nature of the thing itself is changed, but that our power to do is

~ Emily via Sidekick 5 LX

Lorenzo Snow

“Lorenzo had no difficulty bearing his testimony. But he did, however,
struggle with the idea of traveling without purse or scrip. He said,
“from the time I was old enough to work, the feeling that I paid my way
always seemed a necessary adjunct to self-respect, and nothing but a
positive knowledge that God required it not, as He did anciently of His
servants, the disciples of Jesus, could induce me to go forth dependent
on my fellow creatures.””

~ Emily via Sidekick 5 LX

Make Something of Me

“God is determined, if possible, to make something of us. In order to
do this, He has to try us and prove us, to manifest principles unto us.
To show us, by placing us in various positions and subjecting us to
various trials, what we are, to show us our weaknesses and follies, in
order that we may be made to lean and depend upon Him, the Lord.”

~ John Taylor

~ Emily via Sidekick 5 LX

2010: A Year of Miracles

2009 closed with me being just barely baptized and recovery from a year’s worth of heart illness.  I received my first healing blessings.  While stuck on bedrest, I dove into mormon literature, devouring all the books I could find and exploring doctrine and beginning my line-upon-line.  I was finally cleared to “go outside”, and promptly packed up and went camping, reading “Jesus the Christ” overnight.

Christmas was spent still recovering, with a little tree in my little scary apartment that had no heat and a fireplace that gave me pneumonia.  But me and Neitzsche had the gospel, and we were happy and content.

But also, cold.

I got my Patriarchal Blessing at the end of December, and I was so new that I didn’t understand much of it beyond being aware it was amazing.  However, in a paragraph about my personal study and things to memorize, it specifically listed the Family Proclamation.  So I started there, just because it was specific enough for to know something to do.  I started memorizing it while in cardiac rehab, and would read it out loud to my “family” – my first names of my family I had begun to do at the Temple every week!

 I did not see my family still last Christmas, but the Family Proclamation got me to thinking about them.  So I did, for Christmas, send my a letter each to my mother and to my father.  My mother wrote back.  Then I started writing her every week.  Then we started emailing.  That’s how I got my mother for Christmas.

The Queens came and caroled to me, which was awesome because people just don’t go Christmas caroling Deaf people!  I laughed so hard!  It was AMAZING.  I loved it!

After being so sick, and all that hospice nonsense, I was very, very happy at the sight of Spring bursting forth.  I did not think I would see Spring, and this began my understanding and the increasing of my testimony of blessings and healings and faith.  To me, Spring was a miracle.

I began to walk again, resuming my Neitzsche walks that I loved before getting sick, which now had been a whole year ago.  I did not yet know that I qualified for cochlear implant surgery, and that there was one more year of surgeries ahead of me.

After studying the lesson manuals about the different prophets, and re-reading the Joseph Smith one that I had started in the middle of (in Relief Society, when I started going to church), I decided I wanted to learn more about that Joseph Smith place and the whole Nauvoo thing.  I googled it, researched it, and decided just to go see it for myself.  On a whim, I invited my newly re-discovered mother to go with me.  She agreed!  Three hours later, we were on our way to Nauvoo!

We raced ahead of a snow storm, literally making it to St. Louis twenty minutes before it hit!

AND, I could not just drive through St. Louis without stopping to do baptisms!

 The next day we drove through snow, staying ahead of the ice that followed, and made it all the way to Nauvoo!  We left St. Louis at 6am, and made it in time to tour Carthage Jail.  It made me cry.  It was amazing.  We were the only ones there, and so we got a special tour by the missionaries, where we got to go inside areas normally closed to tourists.  It was so special and amazing, and my mother accepted a Book of Mormon there, for the first time.

From the Carthage Jail, we headed to Nauvoo.  When I saw the river, THE RIVER, where the pioneers crossed, beginning on a day as cold and icy as that day I was there, I did weep and weep and weep.  I cannot describe how incredible the experience was, and how powerful it was to me.

Then, finally, up the road just a tiny bit,
around the corner and on the hill, was the Nauvoo Temple.  It was amazing.  While I went in for baptisms, and a personal tour (the Temple president said they were waiting on me – it was so CREEPY!  In that good, mormon kind of way!), my mother toured the little village there.  It was a very special day for both of us, I think.


After we saw all we could see in a single afternoon and evening, we drove all the way back to St. Louis that night!  We both only had the weekend off, so yes – we drove to Nauvoo after work on Friday, and were back in time for work Monday morning!  It was CRAZY!  But the time together in the car was precious and amazing, and so healing for us.  After this trip, we were friends indeed.

 The next exciting adventure was my first lesson in the blessings that come from tithing!  I got a house for my birthday!  No joke!  It was finished being built by my birthday, and we closed just after.  It was such a sweet experience.  To get baptized, I had to move out of my giant house the summer before… I lost a lot of furniture and fancy things, and I lost a gorgeous house.  I lost my best friend of three years, whom I thought I was going to marry.  Because I wanted to get baptized, I had to just let go of the contract and everything, just sacrifice it in obedience, my first big act of faith.  I was also paying for cardiac bills at the time, and started tithing, and lost all my equity and everything – it was a picture of financial ruin for foolishness from any other perspective, but it was an act of faith for me, part of preparing me for baptism.  So to me, this house was a miracle – a miracle of blessings for obedience, and a miracle of tithing blessings.  It was amazing.  I got a really good deal, but it was quality work from the builders… but they made several minor mistakes (nothing damaging the house) that also provided for me the free fence for my puppy, all new appliances for free, the garage door opener, etc.  It was AMAZING.  I cried every night, and drove all the way to Owasso everyday to see it.  This was my miracle house, given to me by my Heavenly Father.  And everybody knew it!  That was part of what was so amazing, because all my non-member friends were watching and seeing it all unfold, and even they knew there was no other explanation than it all being a God-thing.  It was AMAZING.

I continued becoming friends with my mother, and we continued healing.  It was very good for us.  I also continued writing to my father each week as well, but he never responded.

My mother, however, was up for another spontaneous weekend trip!  This time it was because I found family that were members!  Distant, but family!  I was doing family history work and connected to another line through my mother’s great-grandfather (the one who settled Eureka Springs), and this lady and I began to email back and forth.  She was so sweet, and turned out to be a Temple worker in Mesa.  I was so desperate for family, and so excited to have found family that was a member, that I decided to go meet her!

So, my mother drove over Thursday night, and then before dawn on Friday morning, she and I started driving west!  Just like that!  It was so fun!  Such an adventure, and again it was good time for us in the car, with nothing to do but talk and heal and chat and laugh.  Like Nauvoo, it is one of my best memories ever of my mother.  We drove all the way to Albuquerque the first night!   Of course I made it there in time to go to a baptism session at the Temple there!

We slept a few hours, and then left all our stuff in the hotel and got in the car and drove all that day to Mesa!  It was so fun, because we  had many adventures along the way… like dinosaurs!

 And my mother and I got to see the Really Grand Canyon together!

Then finally, right at rush hour, we made it to the Mesa Temple! 

I got to meet this lady, who helped me do baptisms, and while I did that my mother filled the car up with gas and got us food… so by the time I was back out again (and finished taking hundreds of pictures of the gorgeous garden grounds!), we were back on the road to Albuquerque!  We made it in the middle of the night, slept a few hours, and then drove all the way back to Tulsa the next day.  It was CRAZY!  But it was amazing!

After that adventure, it was time to say goodbye to my little river apartment:

 Because my house was finished!  Just in time for my birthday!

It was March when it closed, but I was moved in by April.  I missed my Brook Hollow friends very much, but I still got to see them at different things… such as Family Home Even
ing nights at the Masons, whom I love with all my heart.  I am so grateful to them and their teachings, from my first days as a visitor at church almost two years ago, to the friendship that has evolved since.  Mutual edification, I say.

Then I had my first Easter as a Latter-day Saint, and found out that means General Conference, WOOT!

Since I went to TOES to watch General Conference, and like after Stake Conference, I got to go out to eat with Brook Hollow friends afterwards.  But by now my worlds were starting to overlap, such as my terp at BH really being in my new ward at Ranch Creek, so that helped me transition into my new ward.

Then we found out, after being denied for four years, that a new procedure meant I qualified for cochlear implant surgery!  It was very exciting, a very emotional decision to make, and then it all happened very quickly.  We almost did not have time to say goodbye to my hair!

Recovery from surgery took more than two months.  It was horrific and horrible, but it was a miracle-in-the-making, no doubt.

I was supposed to get my staples removed at 14 days, but my surgeon left the country for a conference!  So I was stuck with staples in my head for another week!  I couldn’t handle it!  My body was pushing them out, so they were becoming painful and I was worried about them getting infected.  So I started taking them out myself with jewelry pliers.  HA!  Because that wasn’t the proper way to remove them, I could only do a few at a time… also, I really was trying to wait for the surgeon, so I was only taking out the painful ones.  But finally, it was so bad that my friend who is a surgery tech did use the real staple-removal-clippers to get the rest of my staples out for me.  My doctor was so mad that I had taken them out myself!  Excepting then, after he realized the time frame, and how we did it, he said I did the right thing.  So.  Whew.

Summer was spent simply, recovering from surgery.  I dropped off the planet from the social world, disappearing from friends and playtime to just be at my new house, my first time to live completely on my own, appreciating self-reliance, and celebrating each day in my little garden that I loved.  It was a beautiful, healing summer that did strengthen the fibers of my soul.

At the end of June, Sherry Campbell got assigned as my visiting teacher.  We made a newspaper dress!

Another thing I did in the summer was watch my hair grow back, so painfully slow… By July, I was clearly in the chia pet stage!  This is me at my mother’s Relay for Life, where I bought a luminary to honor my friend Brother Fish from the Oklahoma City Temple.

At the end of summer, it was time for my first missionary, Elder Max Black (from Idaho), to go home.  He was finished!  It took almost his entire mission to get me baptized and endowed! HA!  But we made it!  This picture is with him and the Hamiltons, the family that baptized me.

I recovered enough from surgery that Neitzsche and I were back to our walks!  My body felt swollen and stiff and weak after the two years of being sick, and I was glad to be outside walking again.  My vis
iting teacher began walking with us every morning, and visiting teaching grew into friendship.

I love her family!  They are so sweet and kind to me!  And they crack me up!  This memory is from the time Ron was out of town, and they had a leak in their backyard.  This is Riley with his invention that sucks water out of the hole… and sprays the mud on himself!  But it totally worked!  It really did get the water out!

I flew to Philadelphia for the National Association of the Deaf conference, which meant I was close enough to go see the Washington, DC temple!  My friend Jen drove me there, and I will be forever grateful to her – and so glad for far away friendships!

On the way back home, my flight had problems and so we were held over night in Houston… that gave me time enough to take a cab and see the Houston Temple, too!

The end of summer was spent swimming and playing, a freedom I had missed out thus far because of surgery.  The Campbell kids and I spent some time at the pool, and helped me as I learned to hear and speak!

Then I got called as a missionary!  How wild is that?!  It’s a MIRACLE!

I was so excited!  I thought I had missed out on being a missionary, since I am too old to go on a mission like the young people do, and not yet married or retired to go on a senior mission.  So I was honored and excited and thrilled that there was an opportunity for even me to serve a mission!

Trying to stick to my missionary budget, I had to go camping in Springfield to see the miracle-est of all!

 It was my brother!  He got baptized!  Almost exactly a year after I did!  SO AMAZING!

And then, by some other classic Emily adventure, my mother gave me another puppy.  And I mean PUPPY.  His name is Rilke (another philosopher-poet, like Neitzsche!).  Neitzsche (Nee-chee) is getting old, and the vet has been saying that if I want to train another deaf puppy, I need to do it now while Neitzsche still can.  He also said another puppy now will help Neitzsche live longer.  Thus came Rilke (Rill-kah).  It is so true!  Rilke is CRAZY, but he plays so well with Neitzsche, and I think we all needed it him and love him.

I do love my baby puppies!

Then, one of the most powerful and amazing days of my whole entire life, seriously.

The PRIESTHOOD was restored to MY family!  My brother got the priesthood!

Esther Zonts started joining me and Sherrolyn and others on our monthly Girls Night Temple trips, and so I began to get to know her family a little.  Adding the Zonts and the King families to one dinner table means A LOT OF CHILDREN!

In October, my dream came true!  I got to go to SALT LAKE CITY!!!!!!!!!!!!!!

It was such an amazing experience!  I got to meet my mission team at Church Headquarters:

And I got to go to FIVE temples in TWO DAYS!

It was amazing.  Just amazing.  I mean AMAZING.

By the time I got home, Autumn was officially in Oklahoma!

Riley and Haleigh taught me how to play “Charades”.  I have never laughed so hard!

Neitzsche started teaching Rilke how to go on walks:

I gave my first talk at my ward, a 5th Sunday 3rd Hour lesson (only a mormon can understand that!) about marriage.  It was intense, and everyone was very gracious.

 THEN THEN THENNNNN, the Campbell kids introduced me to McDonald LAND!


It was THE MOST FUN ever, and I did love it. 

By December, I knew the second cochlear implant surgery was happening for sure.  It was so horrific the first time, that I was not sure I would be able to endure it again.  Also, my body was just worn out from two years of surgeries.  But then, then I went to the SYMPHONY, and it was AMAZING.  I knew the second cochlear implant was worth it, and it gave me the strength to be ready for it.

Part of getting ready meant decorating my new house for the first time!

Also, I was accidentally in my first ever Christmas parade!

All adventures came to a screeching halt last week, when I received my second cochlear implant – this time on the right side of my head.  Again, it was horrific and awful.  Except this time I knew it would be worth it.

A week of blessings and good care from many friends, and much help from many Relief Society sisters, and I was back up and ready for new adventures.

There are always adventures to be had in Emily World, even when Emily is baptized shiny clean, and the days are marked by Temple trips and mission hours.

And 2010 had PLENTY of adventures.

The biggest being like the great Heart Healing of 2009, which did give me LIFE to live, with the responsibility and obligation to live it well, so was this year the great “Ear” Healing of 2010… in which I am allowed to hear, and now responsible and obligated to obey.

2010 was a year of MIRACLES, absolutely.

So now, 2010 closes with 3 Nephi 7:22…

And as many as …. were healed of their sicknesses and their infirmities, did truly manifest unto the people that they had been wrought upon by the Spirit of God, and had been healed…”

I can’t WAIT to see what happens next year!

Tleilaxu’s Eyes

Our brains have an auditory cortex on each side.

I hope that made you as dizzy as I feel.  Because I am mean that way.  HA!

But really, the pathways between your ears (or my cochlear implants) and the auditory cortex on each side of the brain make things a little more complicated:

But let’s simplify a bit:

There is more to hearing than just sound going in your ears.  There is how the sound gets to your brain, and then what your brain does with it.  But there is also a part of your brain that has to remember sounds, and there are different parts of your brain for sounds and speech.  So that’s why it gets complicated.

But for this, we are focused on these pathways of how sound gets from outside my head to into my brain to be understood – and how bilateral (two, one on each side) cochlear implants makes a difference.

The important thing to understand here is that it is not like the one implant only affects one part of my brain.

It does, actually, have the potential to affect both sides of the brain.

It has the potential to affect both sides, in some way, because there are pathways that cross across.  Here’s the simple version of that “complicated” picture above:

To keep things simple, what this shows is how sound from the cochlea can go to that auditory cortex, but it can also go to the other one on the other side!

Here is the graphic from yesterday, from the email I got from Cochlear Community, which talked about bilateral cochlear implants:

You can see from the blue and red arrows at the bottom, how the sound can cross to the other side.

But here is the thing about that cross-over, where the red and blue arrows cross – no one knows until the second implant is activated – whether the cross-over ENHANCES sound or CANCELS sound.  They have no way to test that yet on individuals, and so this is why I was cautioned that I may lose sound after the second implant or when the second processor is added on January 19th.

Michael Chorost, who wrote REBUILT, said it this way (talking about the complicated diagram at the top of this blog, and my cochlear implants being years of upgrades since what he experienced and wrote about):

“It’s well-known that the right ear sends most of its signal to the left hemisphere for high-level processing, and that the hemispheres have only partial access to what each other knows. But there is significant crossover as the signal ascends neural pathways to the auditory cortex. A quick glance at a diagram from Yost’s Fundamentals of Hearing makes that clear.”

(In the 4th edition of Yost, from 2000, it is page 228.)

So what this means is that having one cochlear implant has the possibility to affect both sides of the brain.

Getting a second cochlear implant, with the training will do the same thing, and then teach both sides to also enhance the other.

That feels automatic.

Except there is also the possibility that the cross-over cancels each other out, make it a starting-over kind of thing.

We didn’t know which way I would go.

Would I lose everything, and have to re-learn from scratch?

We knew not EVERYTHING, because at least this time I would know WHAT to listen FOR – even crossover signals that cancelled each other out would not wipe out the sound-memory that has been developed.  I would remember sound this time, know it in a way that I did not know with the first surgery.  So even if I had to start over, at least I would know where I was going this time.

Or, would adding the second implant just give me MORE sound (from the other side of my head) and give me direction (to be able to know where sound comes from)?

Or, would the second processor activate crossover in such a way that sound was actually enhanced?  Greater clarity, more discrimination between sounds, increased speech recognition – even in noisy environments?  More pitch perception, more tone discernment, more ability to understand even music?

We would not know until the second implant is activated, they said.

It is a hard thing to wait the four weeks between surgery and activation.  There has to be a waiting period because brain swelling has to go down enough that it is safe to activate the new 32 (for a total of 64) electrodes in my brain without causing any further damage.  Activation Day, or A-Day as it is known in the cochlear implant community, cannot come soon enough.  It isn’t until then that you know whether or not surgery was successful, and not until the subsequent mappings that you know HOW successful.

And so I wait, urging January 19th to arrive, so that I can find out whether or not this second surgery was successful.  And as I wait, I sit and wonder whether my crossover will cancel or enhance my hearing.

Until last night.

Last night, I was eating chips and realized for the first time that I could hear myself eating chips.  It was the weirdest thing!  I have not heard before this digital sound of your own chip crunching.

And that made me think and ponder, even about my earlier in the week observations that I could hear my own voice better than I could before surgery.  It was significant then, because there was the chance that after surgery the static-sound (the electrodes picking up the sound of brain noise inside my head) would be so much I would not be able to hear with my “old” processor (the first one, on the left), and that I may lose my hearing and my speech while my brain heals.

All of that was possible, even though I do not yet have the processor on the right, so I can hear no NEW sounds from the OUTSIDE of my head
until Activation Day.

So no NEW sound is coming IN to me, but already my brain is processing sound DIFFERENTLY!

This was confirmed when I was thinking about that the awful beeping sound I hate, the one that could drive me crazy because it sounds like an alarm clock going off in your head, or like the heart monitor at the hospital, except it is in my head and no one can turn it off… I just have to wait for the brain swelling to go down, and my adjustment to the new brain noise.  So the static is horrible, and it is frightening.  I can’t stand it!  That static sound is what makes cochlear patients go crazy (literally), and what makes them quit wearing their processors and give up on the Cochlear Implant before ever getting to the point of discovering how to understand sound.

(If you want to hear what it is like to learn how to hear with cochlear implants, going from the static sound to learning to hear digitally, CLICK HERE for a sentence example, HERE for a song example, and HERE for a music example.)

Except what I realized as I thought about that awful static sound is that the ONLY thing that relieves it at all is leaving the processor ON on my left side.  Any time I remove my left processor, that alarm goes off on the right, and it is horrible. So much that my greatest recovery challenge is being able to fall asleep with the alarm going off in my head.  It’s awful.

BUT, look what that means!

If my left processor is affecting the other side, then it means my crossover is GOOD!

And if already I can now hear my own voice, and hear myself crunching chips, then it means the crossover is not just good, but it is the ENHANCING sort!

This is the best news!  It is very exciting to me, and of a great comfort to me.  I do not have to wait four weeks (three more now) until January 19th to find out if it surgery was successful, because now I know it was!  I do not have to wait to find out if my crossover will cancel or enhance, because now I know it is enhancing already!

I will still have to work.  I will still have to remove my left processor and do my listening rehab with the right processor, to teach that side of my brain what it needs to know.

But it was learning all along!

It’s so amazing!

I think it will need it’s own listening rehab, of course, but I do not think I will be starting from scratch.

I think having sound coming at me – into me – from both sides will be some difficult, and sometimes emotional, adjustments and adapting-ness.

But it’s going to be okay.

And so here I am, one week since surgery, ready to get the 20 staples in my head taken out tomorrow morning, and already knowing that my crossover ENHANCES instead of cancels.

I am so relieved, and so excited!  It’s an amazing thing!

It’s a miracle, truly!

I am so grateful for being led to this insight, and for the peace and confidence understanding it brings me.

I am grateful for the people who have been caring for me and helping me.

I am grateful for the blessings I received before and after surgery, all of which promised a quick recovery.

I am grateful for a covenant God who keeps His promises.

After my first cochlear implant, I was not even awake yet after a week.

Today, not only am I awake, but I am more and more alert each time I wake up after sleeping, and I am feeding myself, regaining motor skill function, walking without my walker, folding my own laundry, able to still hear, able to still speak, and healing very well.

It leaves me in awe.

This morning my chapter to read was Helaman 3, and it made me want to claim an “unconquerable spirit”.

I knew, with Lachoneus, that the only way to be delivered is to cry unto the Lord for strength.

I have experienced, like Gidgiddoni, that when you do pray unto the Lord, He will tell you where to go and what to do.  He will show the way.

Even if it is just the pathway from your ears to your brain, from sound to understanding.

It is a miracle, I say.

My cochlea is the size of a pea.

What technology it is that can implant a device into my brain, and connect it to that pea-sized space so that I can HEAR sound, and not just see it.

Rhapsody in Hue: a Deaf Symphony by Cole Holland (the son of the real life Mr. Holland’s Opus)

From Static to Angel Songs

I want to blog because I did not yesterday, and now I remember none of it.  DOH!

This morning I played thinking games, working old formulas and playing in math books to wake my brain up.  I took a good nap, and felt very alert when I woke up.  So I think that was all very good.

The downside of becoming more alert is that you become more aware of how much you cannot do, and that leaves me frustrated and impatient.

I did step out into the sunshine, and feeling the sun on my skin did make everything better.  What a miraculous feeling we take for granted, what a gift of life in such a simple moment.

I am walking better and my motor skills are better today, but the biggest breakthrough is that I am finally starting to make friends with the horrific noise in my head since surgery.  It is an awful static, and it reminds me why some people go crazy after this surgery, and why so many people quit on their cochlear implants before ever getting to the phase of learning sound.  It is horrible.

It is a loud static, screaming at you, roaring at you, and you cannot turn it off or run away from it.

As I was laying there, I was thinking about what the doctor said about it being the sound of “brain noise”, which hearing people learn to tune out when they are babies.  I am hearing it now because of the electrodes in my head, and the brain swelling is making it worse.

But I realized that if it was a natural sound, and not the mechanical monster it seemed, then it must have meaning to it.

And so for the last three days, I have tried hard to tune into it instead of wanting to claw my way out of my own skull.  I wondered if I could tune in well enough, what sound – like learning to hear with my processor – what MEANING could I find in that awful static, how could I de-code it, so that the sound could be ignored or tuned out or familiar – even comforting.

So I began to listen.

And finally, the breakthrough was that I realized part of what I could hear in the static was my own heartbeat.

This was good and bad – at first it was hard because then the static had a rhythm, and that was almost more torturous than the constant static.  But then as I let myself breathe to the rhythm of my own heart beat, I found that my pain lessened and I slept better and I was able to focus more.

But still there was a painful sound in the static I could not identify – not until I realized it was like one of the beeps at the audiologist office, when I get the electrodes tested or a new mapping done.  So I knew it had to be related to my implant, and not one of my body sounds exactly, but somehow connected to an electrode issue.  So I kept listening, and I realized it was the same sound I hear in my left implant (still) when I am too tired or do too much – it is the beeping of one electrode or another (meaning different tones, high or low), but to the beat of my own pulse… faster if I am upset or doing too much, or a slow alert beep if I am too tired or exhausted.  I realized then the reason I did not like this beep was because it was too connected to my pain level.  So when I hurt more, that beep was louder and more persistent, beating out the pulse of my pain.

And so it irritated me, and it annoyed me, and it was like poking a stick at me where I already hurt. 

It was just uncomfortable.

But that was two sounds within the static that I had found – my heartbeat, and my pulse. Related, but not the same, and completely different sounds within the static.  The heartbeat sound is like the inside heartbeat sound, like on an ultrasound.  The pulse is the mechanical beep of the electrode.

Still behind it was static.

And so I kept listening.

Then I began to cry, for because in my pain and my just-this-side-of-a-fever, I had an experience where the static seemed to turn to song.  It was as if the pulse beep became the tick of a metronome, and the heartbeat sound became the rhythm and strings section of an orchestra.

This is what happens when you go to the symphony just before brain surgery.

But it was amazing, and beautiful, and made me cry – not weep, because weeping would have hurt.

But then, it got better – it was as if this simple march-rhythm, the constant, steady beat of the pulse and the heartbeat sound – it led me to realize that the static was a song indeed, and this is what I heard:

It was as if a choir of angels were singing to me through the static, specifically mens voices and then female voices, and then all of them together – and it was if it was this very song, except all the words were changed, as if it were a prayer to me.

I mean, not a prayer TO me, but like a blessing, where it was sung to me and the words were for me.

It was very sacred and special and words not for blogging.  But it was the most amazing experience, even if it was some combination of spiritual-ness-meets-brain-surgery-meets-symphony-ness.  Except I think it was more, of course, but it was amazing.

And since then, the static sound has not haunted me.

I still do not like the beeps when they come, but the heartbeat reminds me I am alive, and it is comforting.  It lulls me to sleep in my womb of blankets, and it comforts me when the pain is especially difficult.

But the static?  I now know the static is song, and so I wait for the words to come.

It makes me less afraid to take off my processor at naptime or bedtime.

It makes me calm and comforted instead of panic-ed or afraid or dreading the moment I have to remove it.

It makes the loud world in my head become a soft place of prayer again, as it was before the first surgery.

It is relief.

And yet, when I add the other processor on – the first one, on the left – when I put it back on, the static noise dies away.  It as is if when the world invades or distracts, then it is too impossible to hear the songs of angels.  And yet, the angels are not far, and still meaning comes to me when my processor hears sounds.

“They” thought I might lose my progress on the left side when I had surgery on the right.  They thought I might lose my ability to process sound, and my ability to speak.  They thought I might have to start all over after surgery.

I still might, after they add the second processor on the right.  We will see.

But for now, on this day, I have lost nothing.  I still can speak.  In fact, I actually can hear myself speak better than I could before, and I don’t know yet why that is or how to explain it.  Also, I can still hear fairly well when I listen with my processor, though some soft sounds are hard to pick up because of the static.  But mostly, mostly it is fine.

I have not really watched tv or listened to music much since surgery.  I tried a couple of times, and a couple of times friends were here who did.  But the static had been my enemy then, like pre-baptism, when I thought it static instead of angel choirs, and so nothing made sense.  I thought maybe I could still understand voices but had lost music.

Not so.

Today, since my static breakthrough, I was able to go to my car (my car is where I can hear best, just because I get to sit in a stereo system), and I was able to listen.

Again, I would have wept if it had not been too painful to do so.

We listened to the entire performance of Mozart’s Piano Concert No 24 in C Minor, and it was amazing.

Here is a clip from the 2nd movement:

It was powerful to me, and it moved me.  It felt as warm as the sunshine did on my face.

I was glad I to be alive.

And I could hear.

I really could!  I could hear the swell of the notes, the individual notes, some cords, the piano pieces specifically – which did make the pulse-beeps on th
e right go away, and sometimes some other instruments even though I could not yet tell which was what or which.  But it was lovely.

I especially love being able to hear each note – each note is such a miracle to me, and each one has its own color and life to it, as if I could sit in my car and listen, and without my body leaving that space, my spirit could waltz past a thousand individual flowers, each that smell uniquely and have their own shape and texture, yet all together reaching high to wave at the clouds passing by.

It was amazing.

This is the miracle of sound, and this is why I am fighting through one more surgery.

Because it is worth it.

The static-song in my head has changed from “O Come All Ye Faithful” to “Joyful, Joyful”, but again with its own Emily words, and I sit and listen and ponder in my dreams which words are poems I write, and which are angel blessings sung to me so that I might breathe another day.