we've moved

This one's going to be short because I'm officially exhausted.  I did want to let y'all know, however, that we've officially moved to the 7th floor of UNC's Memorial Hospital.  Emily is currently settling into her new room #7309, and I must say that it's the sweetest room she's had thus far.  It feels almost more like a hotel than a hospital (well, almost) and the staff here is really nice.  This transfer was also markedly smoother than the last.

A few other developments to note:  Emily has been cleared to have ice chips and small sips of water.  For the last few weeks she's been so thirsty that she's been having dreams about drinking water, and so this is a long awaited privilege.  She also had a preliminary evaluation for swallowing today in which she ate a bit of cracker and some applesauce.  Not the prime rib she's been waiting for to be sure, but it's a start.

Visitors are still very welcome, but they said 4-9pm is the best time because Emily's likely to be pretty busy in the mornings.  

jazz

While not perhaps the seminal piece of theological reflection of the last two decades, Donald Miller's book Blue Like Jazz raises some thoughtful questions and is useful for a good many things. Music theory, however, is not one of these things.

Miller begins the book by saying "I never liked Jazz music because Jazz music doesn't resolve." That sentiment may be a poetic and helpful way to begin his musings, but he clearly doesn't understand what he's talking about, because, while there is tension inherent to the style, Jazz does indeed resolve. The blue notes and melodic tensions withing the harmonic structures of jazz have the beautiful capacity to simultaneously pull your heart apart and put it back together, but in the end they are part of some greater musical wholeness that finds resolution. Sometimes you just have to wait a bit.

I don't know that you've ever thought, "Hmm. I wonder what Jim listens to on his car radio?" but if you were curious, I generally listen to North Carolina Central's WNCU 90.7 which is almost entirely devoted to playing jazz. The other night as I was driving home from visiting Emily, Dave Brubeck's "Take Five" came on the radio, which I'm reasonably certain is my favorite Jazz composition of all time.

I like "Take Five" so much because while it is a pretty bit of melody and harmony, rhytmically it almost doesn't resolve. The song is written in an odd time signature (5/4 to be exact) and the rhythm keeps driving through, but always with a tension and feel that makes me hold my breath waiting for the next beat. (Safety note to readership: do not hold your breath for extended periods of time while driving your car.)

I mention this song mostly because it gives you a pretty good idea of how Emily feels right now. There is clearly a rhythm driving us forward, but there is also a deep tension in where she is and where she would like to be. Being off of the ventilator and speaking have added welcome melodic and harmonic twists, but they have not yet marked the resolution of the song. We are playing out our parts as faithfully as we know how, and waiting for the next changes to come.

This is not yet set in stone, but we are relatively certain that by the end of the week Emily will be moving to UNC's rehab facility on the 7th floor of the main hospital. She's looking forward to the move, but the move is still not home, and so she's a bit downhearted about that. Going home is the only thing on her mind right now. All else is precursor to that. In fact, yesterday when I got to the hospital, Emily was sitting up and painting. She had painted our home. I could see in her eyes that there was no place in the whole world she would rather be.

That is the tension we are living in, and while, like jazz, we know it will resolve itself in time, that resolution feels too far off right now, and the notes a bit too blue. I pray that this transition will go smoothly, and that we will find our resolution soon.

word

 ∆En aÓrchØv h™n oJ lo/goß, kai« oJ lo/goß h™n pro\ß to\n qeo/n, kai« qeo\ß h™n oJ lo/goß.

That's how the Gospel of John begins:  "In the beginning was the Word, and the Word was with God, and the Word was God."  I cannot read these words, but that they make me pause in absolute wonder.  As a lover of words it somehow comforts me and gives me great pleasure to know that the absolute first thing "in the beginning" was the utterance of God, and through this utterance, the rest of existence finds it's meaning.

Of course, here the gospel writer is talking about the person of the trinity that humanity will eventually come to know as Jesus, but I like to think that there is also some dimension of awe and reverence associated with the spoken word.  

Long before there were blogs, note tablets, chalkboards, papyri, or even stone tablets and chisels, the spoken word was the sole source of intelligible communication giving meaning and purpose to life.  These utterances, these narratives of the successes and failures, the genealogies and creation mythologies, these stories constructed of nouns and adjectives, participles and the occasional dangling modifier, are near the very root of who we are as humans.

It's hard to fully appreciate words and language until you no longer have them.  For the past two months, after she was unable to speak any longer, Emily and I have had to construct ad hoc methods of communication.  This confused methodology of sign and semaphore served its purpose, but let me tell you that it was a far cry from hearing her voice.

Today, for the first time in two months, I did just that - I heard her speak.

Now that she is officially off of the ventilator she has a different kind of tracheostomy, and with a special valve called a Passey-Muir valve, she has regained the capacity to speak.  She has been trying to use this valve for several days with some raspy difficulty, and so I must say that it came as a complete surprise today to walk into her room and hear her speaking to me as clear as day.  It did my heart good to hear that voice again, and I dare say that I'm looking forward to hearing much more of it tomorrow!

breathing easier now...

Well, it's official.  Emily has been off of the vent for 60+ hours now.  They're moving it out of her room tomorrow, and will be starting to evaluate her swallowing to see when the trach can be removed permanently.  

We've also seriously been discussing the possibility that we'll be moving to UNC for rehab within the next week.  This will mean less driving for me as the rehab facility is almost within walking distance (and certainly within a free bus ride) of the church.  It also means that Emily will be looking forward to some difficult exercises and serious exertion.  These next steps (literally and figuratively) will not be easy, but after the last two months they seem like a welcome challenge and a chance to move on.

Emily is elated.  

Thank you all for your support up to this point.  It has made more of a difference than any of you will ever know.

restoration

Perhaps it's time to start telling resurrection stories.  Or at least stories of miracles and great healing.

Emily has been in the hospital for just over two months now, and we have had our share of  important landmarks along the way.  For the first three weeks it seemed like all the landmarks were outlining a path that we did not want to go down, but were compelled to follow for better or worse.  There was the last time Emily could stand up, and the last time she could brush her teeth.  Then came the move to the ICU and the feeding tube and finally, the ventilator.  Out of all of these, it was the last that was so unequivocally difficult to handle.  It marked the point where her body could no longer support its own attempt to breathe, and it marked a near total loss of control for Emily.

Those of you who know Emily, know that she's very independent, and so relinquishing control of this most basic operation of her body - breathing - came as a real blow.  

After a short rally it became apparent that her body was not cooperating with her, and that this would be a long road.

If you've been following along you know most of the rest of the story.  What you don't know yet, however, is that as of 3:00 this afternoon Emily has been off of the ventilator for 31 straight hours, and counting.  Her blood gasses are holding steady and her body is reclaiming it's ability to breathe.  When I came in today and she told me that she had been of the vent since yesterday she began to cry tears of Joy as I hugged her and told her how proud and happy I was.

"You are amazing," I said to her.

She shook her head and pointed up, saying "no, God is amazing."

"This," she reminded me "is a miracle."

And so it is that I've come to say that it is time to begin telling resurrection stories - miraculous stories of healing.  

We're only a week away from Pentecost, but it feels like we are just now experiencing the fullness of the Easter season.  There is still a ways to go, but even so, we give thanks, and rejoice in this sign of the resurrection along Emily's path to restoration.

disappointment

Well, Emily had a major disappointment today - Adam Lambert didn't win American Idol.

On the other hand she was off of the ventilator for at least 14 hours today (she was still off when I left the hospital).  That means in the last 48 hours she has been off of the ventilator more than she has been on.  I'm always cautiously optomistic about these things, but her respiratory therapist said that she'd like to see her off of the vent for 24 hours straight by Sunday.  At that point they'll check her blood gasses and see if she can't just stay off permanently.  

Just thought you should know!

toothbrushes

You and I probably don't think much about brushing our teeth unless, of course, we find ourselves on the way to work or school and we realize we've forgotten to do so.  It's one of those more or less perfunctory tasks that we often take for granted.

Brushing her teeth was one of the last things that Emily was able (and determined) to do before her mobility seriously declined into paralysis.  She said her teeth felt like they had raincoats on them, and so to alleviate said situation I was obliged to help her figure out a way to brush her teeth in bed.  To her it was a big deal.  

Yesterday she was able, with no small degree of effort and concentration, to brush her teeth again.  Her arms have become dramatically more mobile over the past two weeks, and she has progressed to the point where she could hold and manipulate the special toothbrushes that the respiratory therapists have been using to brush her teeth.  I saw a spark of determination and self-confidence return to Emily's eyes.  A sign for which I must say I am very grateful.

The toothbrushing front, however, was not yesterday's only victory.  She was also off of the ventilator for 12 straight hours.  They took her off of the ventilator at 9am and did not put her on until after American Idol last night.  

This was no small feat.  When we approached 8 hours the respiratory therapist informed her that she would like to see Emily try for 12 hours.  Emily (who has become remarkably more communicative with regards to her facial expressions) looked at her as if she were crazy for a moment, and then screwed up her courage and said, ok let's do this - and she did very, very well.

Although we still have some work to do, we've already begun the discussion about where to go for in-patient rehab after Emily has gotten off of the ventilator.  It looks like we might be coming to UNC for that as we continue our tour of the triangle hospital scene.  

Emily continues to fight boredom, but yesterday when I got there she asked me to read her mail to her.  Amidst the other cards was a plain white envelope with a star stamped on it.

"What's this," I said.

She shrugged and mouthed "I don't know" with a smile.

Inside that envelope was a card that she had made me that morning with the help of her physical therapist.  I love it.

How lucky am I to be married to such a great woman?  :)

eight

As a quick update, Emily was off of the ventilator for eight hours today.  She was tired, but very pleased with herself.

double-parked

Thank you all for being patient with my updates.  As Emily continues to improve, and as I have gotten back to work, time has been at a premium.

My day began in epic Monday fashion.  I was running late, upon arriving at church I could not find a parking space, and I was berated by an elderly woman (which sounds better than being yelled at by an old lady).

The last two of these are related.

This is hard to explain for someone who has never been to University United Methodist, but if you have been to UUMC it will be a familiar tale.  You see, parking is one of our primary challenges at church.  We probably have 1500-1600 members, but because we sit on a tiny little island in downtown Chapel Hill we have 38 parking spaces (which is 3 more than we had las year).  You don't need to be a math genius to see the difficulty.

To make matters worse there is some ongoing construction in our parking lot that has claimed 10 of these spots.  We also have a preschool at our church, so when moms and dads are dropping off their children actually finding a parking spot is nothing short of a miracle.

Today there were no spots, and so needing to get to work I parked behind two cars.  I knew the owner of one, but not the other so I left a note on my windshield detailing my location and my phone number, and went inside.  I watched the parking lot from my window, and as soon as a spot opened up I went outside to move my car.  As it happens, I also went outside to the aforementioned woman who was clearly incensed about the parking situation.  

After she yelled at me a bit I explained to her about the note and all, and apologized, and she apologized, and I moved my car.  

I do not know the woman, and I certainly do not mean to speak badly about her.  In fact, if I knew who she was I'd probably apologize again, because I know how much I hate it when someone parks me in.  The thing about being parked in is that when someone has you double-parked you feel helpless.  There is nothing you can do about it but have them towed (which she may have considered as she was dialing her cell phone when I saw her).  You're stuck, and no matter how you feel about the situation you just have to wait it out sometimes.  

That's sort of where Emily is right now.  She is improving in breathing and mobility, but she also goes through periods where the end is hard to see.  In a few days it will have been 2 months since Emily first entered the hospital.  These two months have held the horror and glory, and the mercy and grace of a whole lifetime, and we have yet to escape them.  They have been so frustrating, I think, because they are precisely like being double-parked.  There is nothing we can do to end this journey sooner than it will end.  We just have to wait, and keep taking forward steps - one in front of the last - until Emily is fully restored.  

The weekend was rough, and some small measure of depression is starting to become inevitable.  The other day she said she felt like a failure because she was still on the vent.  I told her she was the bravest woman I know, and that I love her.

Her distress came primarily from the fact that she was feeling ill and was unable to come off of the ventilator at all.  I think she thought this would cause her to have a major setback, but yesterday she was back at it and was off for 5 hours.  She is off of the vent (and napping) as I write this, and so far she has been of for nearly 5 hours already today.  She is determined to go longer.  See what I mean about being brave.  :)

The thing about promises...

In the 32nd chapter of the book of Jeremiah you'll find an interesting little story in which Jeremiah makes a seemingly ill-advised purchase of some land.  His cousin shows up and explains that there is a field at Anatoth that belongs to his family, and he's giving him the opportunity to redeem the land by purchasing the deed.  

Sounds like a great idea so far right, but the thing is that that the Babylonians are camped out right next door, and Jeremiah (who is after all a prophet) knows that Israel is about to be cast out from the land into exile.  This real estate transaction is sounding less and less tempting, but Jeremiah bought the land anyway as a sign that although Israel would go through an especially awful period in their history, they would yet be redeemed and restored to the land.  

Jeremiah 32:15 reads "For thus says the Lord of hosts, the God of Israel:  Houses and fields and vineyards shall again be bought on this land"  Through Jeremiah's sign-act, God was making a promise of restoration.

The thing about promises, however, is that you're very often obliged to keep them.  Especially if they're promises you've made to your wife.  

In the first two weeks of Emily's illness I found myself promising a lot of things.  I promised I'd be back at a certain time to visit.  I promised I'd take care of certain things.  To be honest, I guess things just felt so our of control for both of us that I was trying to give us little footholds to keep us from completely falling off the deep end.

One of the things I promised was that I would finally break down and take ballroom dancing lessons with Emily when she gets better.  I promised this, of course, because I wanted Emily to be able to imagine that she would be restored to wholeness, and that she would be able to dance again.  (Note to you dear reader:  Emily likes to dance.  She dances around the house all the time.  I, on the other hand do not, nor have I ever, had any serious intention of dancing.) 

Of all the promises I made it looks like she's going to hold me to that one.  Hmmm....

As much as I hate the idea of waltzing I'll be glad to see that day come.  Each day she improves a little and we see signs of the promise of restoration.  Yesterday was an especially good day.  She was off of the ventilator for 6 and a half hours.  Given her new freedom, she was also able to get out of the room for a bit as the physical therapists wheeled her over to the rehab room for therapy and a bit of fun.  The therapists have been thinking up fun things to do with her hands, like finger painting and stamping, that are also therapeutic. 

She also read with her Kindle for a long while, following the text with her eyes as best she could while listening as it read to her.  We talked and laughed, and watched American Idol.  All in all, it was a pretty great day.  

Oh, and I nearly forgot to mention that she was able to say a few short words with the help of a speaking valve on her trach.  

The promises of restoration are indeed a welcome change.

Every morning I get up and take Ruth Ann on a walk first thing.  I do not do this because I am particularly fond of mornings (although generally I am) I do it because Ruth Ann reminds me of my responsibilities at precisely 6:50 every morning with a lick to the arm.  As unwelcome as this might sound, at least it adds some regularity to my life which has, as of late, spun a little out of control.

Anyway, we live in a pretty wooded area, with lots of nice trails and streams and as were on our walk this morning and it seemed pretty peaceful.  No that's not the word for it.  Idyllic would perhaps describe the scene better.  There were birds flying about and singing, squirrels and rabbits hopping about, and much to Ruth Ann's delight, a pair of mallard ducks ambling over the lawn.  When she saw the ducks, a look of excitement came over her face and she turned to me as if she were saying "Please let me go get them. This is what I was born for!"  Much to her disappointment we continued on leaving the ducks as they were.

Just as much as Ruth Ann enjoys chasing small woodland creatures, Emily loves to read.  She is, what you might call, a voracious reader.  She reads 10 books to my 1.  For the past month or so her vision has been doubled and blurry, and so she has been unable to read or watch movies.At first I read to her, but lately we've taken to listening to audiobooks, and many thanks to those of you who have lent them to us or who have helped us to figure out how to download them from the public library.  This has been something of a comfort to her, but she has still be dependent on someone else to do the reading for her rather than being able to read on her own, which is what she would really like to be able to do.

There has been a breakthrough on this front, however, and I want to tell you about it.  

Some members of our church got together and bought Emily a Kindle.  It's a phenomenally amazing device that allows one to read books electronically.  It's light and easy to use, and (best of all) adapts to help Emily read.  The text can be enlarged to where she can read it, and if she is tired it can turn text to speech and read to her.  Her hands and arms have gotten stronger over the past week, and she can push the button to turn the pages.  This is a big deal to Emily not just because she loves books, but because it has returned to her some small measure of the independence that had been stripped of her by the GBS.  She is not quite strong enough to hold it up yet, but she has charged me with taking very good care of it and helping to prop it up for her so that she can use it.

I wanted to thank all of you who were a part of this gift and every gift that has helped Emily through this.  Small kindnesses have taught us to receive grace in an new way, and remind us what a wonderful group of people we have surrounding us through all of this.

Finally, as an update to her condition, she was off of the vent for 2 hours and 45 minutes yesterday and 4 hours straight today.  Her arms are stronger, and her therapists are working her hard.  She astounds me with her strength and courage as she slowly works her way back toward wholeness.  

Today was sort of an off day in many ways, but despite it all Emily still spent 2.5 hours off of the ventilator all in one go.

She has really been enjoying all of her visitors, letters, cards and presents.  If you're ever in the area, feel free to stop by!

tinkering

Much to Emily's chagrin, I am a tinkerer. I have a fascination with taking things apart to see how they work and then putting them back as they were or attempting to improve them. This tinkering is generally successful, although there have been a few casualties that I have chalked up to learning experiences.

Emily refers to this as my peculiar ability to take a perfectly good thing and crap it up.

I've been tinkering a great deal at night when I should be sleeping but cannot. Right now my dining room table is full of screwdrivers and soldering irons. I have taken apart and rebuilt at least two guitars, one digital camera, one guitar effect pedal, and I have constructed another guitar effect pedal from scratch. I am happy to report that all of the aforementioned articles are now in working condition, and some have seen considerable improvement.

The point of all this is that everything in our lives has seemed so out of control in the past month and a half that I guess I've been retreating to my tinkering as a way to feel in control of something. Soldering tiny resistors and capacitors to a circuit board has given me some measure of comfort and normalcy.

I love to know how things work, and when they don't work I like to make them work. This is what is so frustrating about Emily's condition. Although they have good ideas from clinical observation, no one knows just what it is or how it works. GBS is so rare that there really isn't a lot of money really spent studying it, and so treatment is largely a matter of making sure things don't get worse and hoping they get better. It drives me crazy. I wish there was something I could do. This has taken our lives apart and I just want to be able to put it back together - to put Emily back together - but of course that's not how it works.

I assume, however, that God is a great tinkerer as well. If I were God I don't know how I could resist the urge to tinker with creation from time to time. Perhaps tinkering is the wrong word, but I do believe that God is present even in Emily's sickness and slowly (indeed, too slowly for my liking) restoring her to health. I believe this because God incarnate in the person of Jesus Christ could not resist the urge to heal those whom he encountered on his way, and these healings tell us a bit about God's nature as the great physician.

The prayer following communion in the United Methodist church reminds the church that we give thanks for the sacrament of communion in which God has given God's self to us.
The bread and wine become, for the church, the body and blood of Christ so that the church might become, for the world, the body of Christ redeemed (read, "healed") by his blood. It is an act of taking something whole, breaking it, and through some holy mystery reconstituting it through the people of God. It is a supreme act of tinkering.

This, I perceive, is the same cycle of wholeness, brokenness, and restored wholeness that we are currently experiencing. We are glad to be moving toward that third stage, but we continue to pray that this holy mystery would hurry itself along. 

Today Emily was off of the vent two separate times, 1.5 hours and 1 hour respectively for a total of 2.5 hours today.  The second time she was off the vent she was in a special chair and I was able to wheel her all around the halls of her floor so that she could get outside of her room for a bit.  For her it was stressful and exhilarating at the same time.  For me it was nice to go on a short walk with my wife.  She continues to grow stronger by imperceptible increments, but the sum is greater than the parts, and she would appear much improved to someone who had only seen her a week ago.  

Ever onward.

I don't have much to say right this instant, but I did want to keep you all as up to date on Emily's progress as possible.  Sometimes the progress only becomes apparent over a few days time, so it takes me a bit to think of what to say.

Emily's main progress over the weekend has been in the area of breathing.  She has been off of the ventilator for at least an hour everyday since I first posted that that she was off of the vent.  As you can imagine this is exhausting to her, and so the respiratory therapists have to balance between working her hard and wearing her out.  Today her physical therapy was pretty tiring so she only did an hour.

One exciting thing happened on Sunday, however, that y'all might be interested in.  

She's gained the ability in the past few days to move her arm back and forth across the bed (or pillow, etc...)but she has not been strong enough to really lift against gravity.  She has been waving at people from this position, as her wrists strengthen.  Yesterday, she went to wave, and sure enough she picked her arm straight off of the bed from the elbow down and held it in the air.  I was surprised, but I realized by the look on Emily's face that she had even surprised herself.  

It seems like a little thing, but I hope the coming week is full of little surprises like this one.

There is something poetic about breathing.  It is no mistake that we use the same word - inspiration - to describe both the act of breathing and the act by which the human imagination is engaged in creative activity.

Breathing is the deep rhythm within creation itself.  When the ancient Hebrews were trying to retell the story of creation, they described the first and most basic interaction between God and humans as the breath of the creator filling and animating the created being.

A deep breath is at once wondrous and inevitably overlooked.  So, to increase your appreciation for this next bit, you should stop and take a deep breath.  No really.  Take a deep breath.  

Emily has been on a ventilator for just over a month.  I am deeply grateful to the good folks at Nellcor Puritan Bennett who made this machine that has kept Emily alive through this sickness, but it is an undesirable substitute for breathing on ones own.  The air pulsing to and from this mechanical metronome is only inspiration in the technical sense, and yet it has also been a blessing in its turn.

Yesterday Emily scored a -21 on her NIF test.  Today, when I got here, her therapist stopped me in the hall, and told me to ask Emily about her big news.  The big news was that this morning, before I had gotten here, the respiratory therapist had disconnected her from the ventilator to assess whether or not she could breathe on her own - and she did for 30 minutes.  Later in the day she did the same thing for another 30 minutes.  

That makes 1 hour total that she was off of the ventilator today, and 23 to go.  That might not seem like much, but the respiratory therapist said she was hoping to have her off of the vent for 15 minutes, but Emily was able to do more than she expected.  Tomorrow, she expects her to do an hour and a half.

Emily has been greatly encouraged by her achievement today, and I must say that I myself am breathing easier tonight as well.