10 days

I've been remiss in updating this as much as I have wanted to, but this has been a busy week.  Emily continues to improve daily, so I thought I might give you a comprehensive update in comparison to where she was 10 days ago.

In the past ten days her ventilator settings have been decreased to the point where she is essentially breathing normally (albeit with the help of the machine).  She hasn't been at this point since the second week at Duke so this is a big deal.  The respiratory therapist expects that in the next few days they will begin trying her off of the vent for short periods, and gradually increase her time off of the vent.

She has regained a surprising amount of muscle control in her arms and core.  She is waving her wrists and moving her fingers.  She can move her head better, and her facial expressions have improved.

She's currently working across disciplines with respiratory, physical, occupational, and speech therapy, and she has made progress in each.  

Here's the big news: With the help of her physical therapists she was able to sit up on the edge of her bed and look out the window.  This requires one therapist behind her holding her up, and one balancing and working with her from the front.  She was turning her head, and using her ever-strengthening arms to balance herself side to side.  She has done this for the past two days for 10 minutes and 13 minutes respectively.

This change in perspective has done wonders for her mood.  She says she's still restless and impatient for more improvement, but after I reminded her just how far she has come in the past 10 days, she nodded and agreed that, however small, it has indeed been a miracle.

I have washed my hands and used hand sanitizer more in the last month than perhaps in my whole life, and while I understand the helpfulness of such practices in a hospital, Hand sanitizer and I have a tenuous relationship.

While I may see the good of using Hand sanitizer in a hospital, I have long been an opponent of the growing trend of having hand sanitizer on the Eucharist table.  There's a great deal of practical and theological thought behind that statement (and a little bit of reading Julian of Norwich), and while I won't make this a platform for my "anti-hand sanitizer as the third element of communion" campaign, I will say that while I have nothing against the practice of cleanliness, the use of hand sanitizer as a part of communion is a deeply problematic symbolic act.

Symbols are important.  Tom Wright wrote (and I paraphrase) that you can joke about a friend's nationality (provided you know them well enough) and you'll get a laugh, but see what happens when you try to burn their flag.  Symbols speak of a deep and often unarticulated reality, and they say volumes about our identity.

The basis of my belief is the fact that we use hand sanitizer primarily because we're afraid of acquiring germs from one another.  I know people want to be healthy, and they think that avoidance of all germs is the way to do so.  I also know that well meaning pastors use hand sanitizer as a way to avoid passing germs in their congregations.  Whether or not this actually works (the jury's still out on efficacy) the symbolic nature of the practice is the problem.  Salvation is a messy business.  It is blood and tears, dirt, sweat, and all manner of grime.  God's singular act of redeeming humanity required incarnation, and we all know that being human is a dirty business.  Hand sanitizer is a fundamental symbol of fear that in touching one another - in community - we may put ourselves at risk.

In this world, where we are afraid of one another.  I think the church should look differently, and I especially think that the Eucharist should be marked by it's peculiarity.  There is no place for such fear in a sacrament that is fundamentally about broken body and blood.  About God's own self sacrifice to constitute a new community that is no longer afraid of one another, because they emulate that same deep love for one another, and for others.  Life is messy as is Salvation.  We must not live in fear off this mess.

If any of you have been in the hospital for an extended time, you might know that the normal method for hair washing of a patient who cannot leave bed is a cap of sorts that is supposed to shampoo and clean the patient's hair.  It does nothing of the sort.  In an attempt to minimize the mess, nothing is accomplished.

So Emily has been absolutely dying for someone to actually wash her hair, and Saturday night she got her wish when one of the CNAs came in to wash Emily's hair.  She explained to me that the shampoo caps were useless, but she had another method for hair washing.  This method I soon learned as I helped out, included copious amounts of towels and shampoo and a basin full of hot water that she carefully poured over Emily's hair, working it and sopping it up by hand until she had thoroughly washed all of the grime away.  It was a full-on flood and there were prodigious amounts of water everywhere. We had to completely change the bed linens.  

It was fantastic and Emily loved every second of it.

As she was washing Emily's hair, the nurse said "well, it's a mess, but it sure is worth it!"  And I made note of that because I thought it was a fitting aphorism as an allegory for life in general, and our situation specifically.  She may as well have said "life is a mess, but it sure is worth it."  What she was doing was a prophetic symbol, declaring Emily's worth and the promise of wholeness.

 There are many things that we've learned from all of this, but one of them is that it's no use living as if you're afraid to live.  Everything is precious, and even something as simple as washing your hair can be a miracle.  

Emily continues to improve slowly and by increments.  Yesterday was tough, but even in the midst of that her breathing test improved to a -13.  Over all she is improving.  She is moving a bit more every day.  Her hearing is clearer.  Her smile is brighter.  These too are symbols.  They are miracles of promise, even amidst the mess.  

So, people have been asking me what they might do for Emily for the past month, and most of the time people have been anticipating our needs so thoroughly that I've not been able to think of anything. 

Today, however, I have a request.

Emily asked if someone might come and give her a manicure.

Any takers?

Whenever I see your smiling face...

Emily Just asked me who got kicked off of American Idol last night.  She looked utterly disgusted when I told her.  Her eyes carried the story.

But today it's not just her eyes doing the work.  Her expressions have begun to come back little by little, and that's why I'm writing right now.  Just moments ago, she smiled.  It wasn't a big smile, and it took considerable effort on her part, but she smiled.  I told her that I was proud of her and she said she was proud of herself.  You and I smile hundreds of times in a day, so to us it seems like nothing, but Emily has not been able to smile in over three weeks.  It's amazing how important and victorious a smile can be.

There are other small improvements in her arm strength today that are also signs of hope.  Her grip continues to strengthen and she can almost wave her left hand.

Also, as an update to yesterday's post, it seems that I jumped the gun a bit with the pneumonia.  Yesterday the doctors were worried she might have pneumonia, and so started her on antibiotics.  It turns out that she did have a minor infection causing her symptoms, but completely unrelated to her lungs.  Today, she is breathing just a bit better, and her NIF (which I have since learned stands for "negative inspiratory force") that you will remember from earlier posts as a measurement of some importance, is a -8.  Yesterday it was a -5.  The respiratory therapist said she needs to be in the -20 range for them to test her off of the vent for an extended time.  Emily has been inspired by the challenge, and we look forward to more improvement.

Well, it's been a good day.

Slow going

Compared to the progress of the previous week, it feels very much like we've been marking time for the past two days.  Emily is not perceivably stronger, and the doctors have concluded that she is currently battling a slight case of pneumonia (which I gather is a nearly inevitable consequence of being in bed and on a respirator for three weeks).

The good news is that they're starting some new antibiotics today which should take care of the infection.  The bad news is that this isn't helping her get off of the ventilator any more quickly.

Despite the pneumonia her lungs are getting stronger.  Her ventilator settings have been gradually decreasing since the weekend, and she is very close to being on settings that mimic a "normal" breathing pattern that you or I might have.  In fact, while they were cleaning her tracheostomy yesterday, she was able to take several breaths on her own through the trach, without being hooked up to the ventilator.  We are very hopeful that if they can take care of the pneumonia in a timely manner she'll be working toward periods without the ventilator within the next week or so.

She's been getting a lot of visitors lately, however, and that has been a bright spot for her.  Today Thomas Hopper came by and read to her for a while and as he was reading to her from Wordsworth's Tintern Abbey I was caught off-guard by the freshness and poignancy of his verse.  (Though an English major myself, I generally dislike poetry.  I confess that I only appreciate Wordsworth when Wordsworth is read by someone who appreciates Wordsworth.)  In any case, Emily enjoyed it thoroughly and as I sat and listened I appreciated the general tenor of the piece.  

There is a lot of text and subtext here, and I won't bother to parse out the whole thing - though I do suggest you go read it yourself - but I will tell you my immediate reaction to the poem today.

By one reading, Wordsworth is comparing his present experience of Tintern Abbey to his past remembrances of the location, and noting how his connection with this place has sustained him in difficult times in other places.  He hopes that this place that has sustained him in the past will do so in the future, noting "that in this moment there is life and food for future years."

I thought for a moment about all that we have been through this past month, and all of the love, prayers and support that have sustained us and kept our faith strong.  I found myself hoping that even though things have been exceedingly difficult, that there will be something in this moment that will be life and food for future years.  I pray that we never take little things for granted again.

vows, poetry and milestones

I learned something about myself today.  Because it is my birthday, I received a coupon for a free drink at Caribou coffee.  When I went to redeem my coupon, the barista asked me what I would like - anything on the menu, even the fancy new summer drinks that they hadn't officially started making yet.  

I asked for a large black coffee. 

They couldn't understand why I would take a $2 drink instead of a $5 one, and eventually we compromised on an Americano.  (hopefully some of you will see the irony in that)

I mentioned that story for two reasons.  First to say that today I turn 30.  Needless to say this is not the way I envisioned my 30th birthday, but many thanks to those of you who have helped me to celebrate over the past two days.  I always say that God is a God of the interruptions, and these have been welcome detours on this long road.

Secondly, the coffee incident reminded me that I am a peculiar sort of person, and that I appreciate consistency and the expected.  I am skeptical of any coffee drinks that end in "blast" or "-cino" or have the word "super" in them.  

Anyway, since I officially become an old man today, this started me to thinking about other milestones along the way.  Today also marks one month since Emily became ill - an inauspicious milestone to be sure.  

I have also been asked about another milestone no less than 20 times by nurses and doctors over the past month.  Everyone wants to know how long Emily and I have been married and I happily tell them that we're just shy of our 7th anniversary.

During the second week Emily was in the hospital, we were watching some TV show in which two of the characters were going to be married.  They were talking about some difficulty in their lives, and the guy told his bride-to-be that he would be there for better or for worse, etc. and when he got to "in sickness and in health" I saw a tear on Emily's cheek.  The truth is that you never think you're going to be in this situation.  The worst "sickness" you think you'll ever have to weather is the flu, or a really bad cold.  I knew at that moment what those words really mean and why they should not be said lightly.

Emily and I never said those words, however, because we decided to eschew traditional vows in favor of ones that we had written ourselves.  Nowhere in those vows can one find the words "in sickness and in health" but in the spirit of our vows there is a deep abiding faith that sickness and health are not even categories to be considered.  We trusted that it was understood that we were entering into a relationship regardless of circumstance.  

I would trade places with Emily right now if it would end her suffering.  I never expected I would ever feel that way about anyone.  It seems that love - real love, and not the stuff at the beginning of a relationship that you think is love - has taken me by surprise.  It is the sort of love that makes me get up and fix two cups of coffee every morning, and breaks my heart when I only have to fix one.

When I got here today Emily had a noticeably stronger grip.  She continues to progress incrementally toward health and wholeness even as she battles boredom and anxiety.  And yet, even in the midst of this, when I got here today she said she had something to tell me.  After considerable effort she spelled "card for you in the closet."  I was surprised, but I looked, and with her mom's help she had gotten me a birthday card and even had her mom write a message inside.  I can't tell you what that card means to me.

This everyday love is the real stuff of our wedding vows, and while I won't bother you with writing out our vows here, I will end with a poem that Christopher Couch, one of our professors, offered as a prayer on our wedding day.  I've come back to these words many times over the past month for inspiration and peace:

Wedding Prayer

With your love, that we marry

With your love, that we may have long life together

With your love, that we heal together

 

With your love, that we are right

With your love, that we are home and happiness

To each other

And to others

 

What more may we ask

Of you

 

Well, many things

And in our course of time

We will ask

 

For now, we ask for these

Earnestly, gratefully

 

We ask, we pray

Together

Amen

There will be a longer post today, but I got a lot of questions yesterday about what Emily might need or want, so here's where we are:

Still no flowers. Sad, I know, but because she's still on the ventilator flowers will have to wait. Among all the beautiful flowers that she's received April Cooper brought these by the other day and I decided to take a picture of the to print out 8x10 style for Emily's wall.

So I guess if you want to send flowers, they'll have to be the printed out kind until Emily moves on to rehab.

Also, visiting hours at the new place are 11-9. I usually get there at about 2 after I leave church, so a lunchtime visit would be good, or any evening. Emily loves seeing people. (also, no children under 12 right now as per the rules of her floor)

Emily is feeling a bit stronger today.  She can move her head more freely, and her attempts at mouthing words are becoming increasingly intelligible.  There are little flickers of muscle movement in her arms, and she is slowly but surely being weaned off of the ventilator.  All of this progress might be missed by the casual observer, but these miniscule improvements all point toward recovery, albeit a recovery that still seems a very long way off.

The downturn in her health was so precipitous that it was frighteningly obvious that something was very wrong.  This slower more difficult road to recovery takes a bit more care and attention to see.

I revealed a few days ago that I was a big fan of the book of Acts because of the story that it told, but there is also something to be said for how the story is told.  Acts, even though it was not read this way by the early church, is more or less the sequel to Luke.  It continues the Gospel story as the story of the fledgling church.  Luke is the longest gospel, and when you add Acts to it, it becomes quite a miraculous piece of literature.

Movies with sequels generally take their time with character development and plot.  With movies like The Godfather, The Lord of the Rings, etc. individual movies within the series may make sense in and of themselves, but they blossom into new intricacy and meaning when viewed together (Especially if you waste a Saturday and watch them consecutively).  This perspective is only gained, however, through a significant investment of time.

So too with Luke/Acts.  

Mark on the other hand is a violently fast paced Gospel.  The author of Mark uses the word "immediately" no less than 30 times.  Scenes crash into one another, and you can sense the urgency in the writer's mind that this Kingdom of God thing is important and that it's probably coming very soon.  My favorite moment in Mark's Gospel is when Jesus is baptized.  In most modern translations it says something like "the sky opened and the spirit descended like a dove", but in the Greek the word for "opened" is "schizomai" which literally means torn apart.  It's the same root from which we get the word schizophrenia.  The kingdom was breaking through, impolitely at best, and it was doing it right then and there.

Mark was written very soon after Jesus' death, and it was years until the author of Luke took to penning his works, and so the urgency of Mark gave way not to complacency, but to nuance.  Luke realized that the church might be in this for the long haul, and so they would need to develop patience, and the eyes to see the Kingdom of God in the ordinary.

Our lives were torn apart with Mark's efficiency, but recovery has taken a more Lukan theme.  There are thin places where those with the patience and perception can see the Kingdom breaking through the everyday.  I have begun to see that what I believed to be an impassible chasm is perhaps one of these thin places.  Where God seemed nowhere to be found, I have begun to sense signs of the in-breaking kingdom.

In Rodney Stark's book "The Rise of Christianity" he proposes, among other things, that one of the primary reasons the church in Acts grew so quickly was that they were not afraid to care for one another.  They devoted themselves to the teaching of the disciples, to the breaking of bread, and to prayer, but they also devoted themselves to one another.  When there were plagues that wiped out hundreds of thousands of Romans, the Christians stayed to care for the sick while everyone else got out of town.  Not only did this lower mortality among the Christians, but it served as a witness to others.  To them, even a plague was an opportunity to enact the kingdom that Jesus (and Luke) had urged them to imagine as present among them in even the smallest acts of kindness.

So, if the Kingdom of God is marked by mercy and grace, you have been ambassadors of that kingdom.  In each prayer or loving thought, in food, in visits, and in a thousand other kindnesses, you have enacted the kingdom on earth.  It has taken me a month to come to this understanding, but as loathsome as this condition is, it has been an opportunity for God to come near to us in each one of you.  

living in this season

Just last night Chris Klopp posted a reminder on his facebook status that Easter is really 50 days long.  I replied that this was a good thing because Emily and I would probably need all 50 of them.  

It struck me today how momentary life has seemed to Emily and I over these past 3 and a half weeks.  It seems like it took only hours for her to go from walking, to needing a wheelchair, to being too weak to leave her bed.  Every moment brought further complications.  Each day was struggle enough and we could barely think about the next other than to hope that it would be better than the last.  Honestly I can barely begin to reconstruct the past several weeks.  It seems like the days have run into each other in a haphazard and swirling miasma of suffering and waiting punctuated only by a few bright spots of visits and messages of support from all of you.

I realized last night that I had been looking forward to Easter as one of those singular moments of hope amidst all of this confusion.  Good Friday fit right in with what was going on, and I hoped that Easter day would come and bring ... well I guess I don't know what I hoped for on Easter, but I struggled to make my understanding of the meaning and power of Easter fit with our current experience.

It was my misunderstanding.

Chris' comment, however unrelated, gave me pause to consider how thinking about Easter as a season (the 50 days between Easter day and Pentecost) provides a much better context for thinking about Emily's struggle with GBS.  It does so, I believe, in two ways:  

First, and most obviously, thinking of Easter as a 50 day long season reminds me that sometimes things take time.  Just as we cannot rush toward pentecost, Emily and I cannot rush her healing.  There is nothing that can be done medically to make her heal faster.  At this point it is a waiting game.  We wait for her lungs to be strong enough so that she no longer needs the ventilator.  We wait for her nerves to re-grow themselves, and her brain to remember what to do with them.  We wait for a thousand miniscule and unknown victories that will mark her body's resurrection.  We wait, and we pray for patience.

Secondly, the reassurance that Easter is 50 days reminds me that there is an end to this season, and that this end is marked by Pentecost.  This is no small coincidence.  

I'm quite sure all pastors, theologians and the like have their favorite scriptural stories.  The ones that they return to time and again because they hold some special meaning.  I do not mean memory verses, I mean whole narratives that have shaped and formed them in some deep way. I love the book of Acts.  I could read it ad infinitum.  For me, the birth of the church is no less a miracle than Jesus' resurrection.  In fact, if we are to be the body of Christ then the birth of the church is, in many ways, Jesus' resurrection.  It stirs my blood when, in the beginning of Acts  Jesus tells the disciples that he will be leaving them but not to worry because he'll be sending the Holy Spirit (the paraclete, the comforter, the advocate) and that God's spirit will reside among them.

Part of the reason I like this - I must confess - is that I picture the disciples standing there dumbfounded, trying to figure out what Jesus just said.  The 50 days between Easter and pentecost re-enact this period of waiting and wondering.  Jesus promised that God's spirit would come, but he didn't tell them when or what it might look like.  They were left to figure out what to do in the meantime.  I think it's pretty easy to draw parallels between their situation and the period of waiting in which Emily and I find ourselves.  We have begun to see signs of resurrection in Emily's progress, but we await the fullness of this resurrection, and trust in God's grace to sustain us in the meantime.

So what are these signs of the resurrection?  Over the last two days the respiratory therapists have been able to lower Emily's ventilator settings as her body begins to reclaim it's ability to breath for itself.  She continues with physical therapy, and today her therapist noted improvement in her muscle control over her head and shoulders.  I've begun to see a brightness in her eyes that has been gone for many days.  I believe that brightness to be a reflection of the light at the end of the tunnel.

It may yet be weeks or months before Emily sees the progress for which she so desperately hopes, but that is the season in which we find ourselves.  May our Pentecost come soon.

 

No theology today, just an update.

Timing is important in many things.  A few seconds can make a difference in sports, relationships, even telling a good joke.  A few days have made a difference in our case.  

Weekends are a peculiar time to transfer from one medical facility to another.  Easter weekend is a particularly good example of this.  I think that a lot of the frustrations of the past few days can be accounted for in the timing of her transfer.

Right now I'm sitting by Emily's bed.  She's sleeping.  She's already had a visit from the physical therapist this morning, and spent about an hour sitting up in a special chair.  All of this has tired her out immensely, but it has been a welcome break to the monotony.

Today we feel much more confident that this is the place where she needs to be right now - a place that will help her get off of the ventilator and on toward rehabilitation.  On the other side of Easter weekend this hospital has experienced its own sort of resurrection.  There are more staff on her case, and more attention all the way around.

I've been sleeping with my phone right by my head.  It sounds paranoid, I know, but I've spent the last three weeks worrying about every little thing.  This morning my phone rang and the voice on the other end said, "Mr. McConnell, this is Reneé from Specialty Select Hospital" my heart sank in the time it took her to get to her next words "nothing is wrong, I'm just going to be Emily's caseworker and I wanted to contact you."  I was relieved.

My relief wasn't just the instantaneous reassurance that Emily was fine, it was that now we had someone to help us navigate our time at this new hospital.  An advocate to act on our behalf when things become overwhelming.  I am very thankful for Reneé, and we are very excited about each new step Emily takes on the road to recovery - even if that's just sitting up in a chair.  

Between Good Friday and Easter

Ultimately, today has been a rather frustrating day.  Emily enjoys the quiet of her new room, but the move has not been without it's setbacks.  Apparently while the rest of the world can access nearly limitless information through their iPhones, the doctors here cannot (or have not) accessed some pertinent medical information from the doctors at Duke.  This has lead to some medication changes that has caused problems with Emily's pain management.  I just had a colorful chat with the doctors here, and so hopefully some of this is behind us, but I remain skeptical.

The irony of this condition is that she is simultaneously experiencing near complete paralysis and bouts of excruciating pain.  There is no reason anyone should ever have to go through this.  We wait for Easter, but we feel stuck in the irrational pain of a perpetual Good Friday.

A good friend responded to me the other day, and commented on how I could think theologically in an experience like this.  I must admit that for the first week or so I couldn't think at all.  I felt angry, confused, powerless, hopeless, loved and supported all at the same time.  As it turns out, when I began to think again, these theological frameworks are the only categories that make sense to me.  Truth is, these stories and sacraments of the Christian faith are the narratives and gestures of truthfulness that have helped me to consider all that has been happening over the past three weeks.  

I think sometimes when people start thinking about the problem of pain and suffering they get the idea that in the face of such an injustice faith must either be abandoned (what kind of God would let this happen?) or they think becomes some sort of a crutch that doesn't explain anything, but provides a few gentle platitudes to sooth the injured soul.  I think that both of these approaches are categorical errors.  It could easily be either, but in the end it is neither.  

While I've been reluctant to draw comparisons, I've been thinking a lot about Job these past three weeks.  I write the following words with the caveat that I could write a year's worth of meditations on Job without ever covering the whole story.  I've been thinking mostly about two things and so you'll have to forgive all the omissions.  The first thing is, perhaps, self-evident upon reading the story.  The majority of Job's suffering came from watching those he loved suffer and die.  Sure there were the afflictions to his own body, but a great deal of his torment was the fact that he was powerless to stop the suffering of his family.  

I feel absolutely powerless while I sit by Emily's bed and hold her hand.

The second thing about Job's story that interests me is that he's not alone in his suffering.  A group of Job's friends shows up to try to "help" him through his suffering.  You might think this would be a good thing.  People can't help themselves, and so initially they try to help him figure out why he's suffering.  After surmising that his suffering is a result of some secret sin, they settle on the fact that God must be trying to teach him a lesson.  Understandably this is not helpful to Job.  He listens to them as they try in vain to make some sense out of his suffering.  They offer him all the standard "God" answers, but his situation is not the standard situation.

This idea of "redemptive suffering" is theologically complex, and I can't possibly do it justice here, but basically it's the notion that God chooses to make pain a part of existence so that it makes us stronger (on the off chance that it does not kill us).  This idea rings falsely in Job's ears, because Job is a man of God, and this is not the God Job knows.  Even the argument that somehow God will somehow use this suffering for good seems unsatisfying to him.  Job gets angry and yells at God for a bit, and after a while God answers.  

I'm not sure I'm ready for the answers yet, but I am happy that Job has the chance to have his say.  I feel like through these short notes perhaps I have been allowed to have my say.  

I think that it's worth noting that even when Job becomes angry at God he remains faithful.  I still have faith in the God of grace who loves, heals and makes whole.  I do not doubt that God can sustain Emily and I through this adversity, and in the end help us to grow from the struggle, but to think that God plans this sort of thing is unbearable - that is not the God I know.  

I do not believe in fate.  I believe in a world of free will and infinite possibility.  In such a world there will inevitably be pain and senseless suffering.  I write these words between Good Friday and Easter, but most of you will read them with Easter trumpets ringing in your ears.  This event that we have celebrated over these last days is God's answer to suffering.  Humans suffer, but the God I know suffered and died on a cross, and so he must know something of suffering as well.  To me, the cross is the absolute pivotal point in all of history.  Everything is measured against that.  

At the end of Job's story, one of his friends just sits there in silence, knowing that just being present is sometimes the only answer in the face of suffering.  This is a wise friend.  God does not make us suffer to teach us a lesson, or to make us stronger, but because we suffer nonetheless, God - through the cross - has decided to be present even in the suffering.  It does not feel like Easter yet, but we carry on with the hope that her body will soon bear those signs of the resurrection that we so eagerly await.

We've moved

Things have been crazy, so this will just be a quick update today.  It's Good Friday and it's raining.  That seems appropriate.

Emily is feeling about the same today, but the major bit of information to share with everyone is that we're no longer at Duke North.  Today at about 2pm we moved to Duke Select Hospital at Durham Regional where she's resting comfortably in room 6224.

This facility has a good reputation for helping patients with GBS to wean off of long term ventilator support.  There is also a built in rehabilitation component, so that Emily can get as much physical therapy as possible.  Emily is tired, but she was excited to move.  If nothing else, it is a far cry quieter than the ICU at Duke.  It may not be a big step forward, but it is a step none the less.

Maundy Thursday meditation

So today is Maundy Thursday, which for those of you not familiar with the Christian liturgical calendar is the Thursday just before Easter, and the day on which the church traditionally remembers the Last Supper of Christ and the disciples, along with John's account of Jesus washing the disciples' feet.  That, in fact, is where the day gets it's name.  Maundy is a derivation of the Latin term Mandatum which means commandment.  The full latin phrase is "Mandatum novum do vobis ut diligatis invicem sicut dilexi vos" or "A new commandment I give unto you, that you love one another as I have loved you" -the words that Jesus said to his disciples as he was washing their feet.

You all care about Emily, and not about Latin, so I'll get to the point.  Many people misplace the commandment part of Maundy Thursday.  They think that the commandment is the one from the Last Supper where Jesus offers his disciples bread and wine as representatives of his soon to be broken body, and tells his disciples to do this in remembrance of him until he should see them again in final victory.  The Eucharist is indeed central to this day, as is the remembrance that Jesus' body will inevitably be broken on the following day, but I'm sitting with Emily, and her body is broken, and frankly the connection is a little too clear today.

So, instead I offer you this thought on this Holy Thursday.  Christ commanded his disciples to love one another as he loved them.  He knew that his time was short and he wanted this central premise - this habit of grace and mercy - this love that marked his whole nature and purpose, to continue through those who remained.  He emptied himself of his power, and with a basin and towel entered into our dirt.  All of you that have been supporting us have been following this model, this commandment and we are grateful.  You have loved us as Christ himself might, and we want you to know that it means the world to us.

Emily is about the same strength as yesterday.  She is going to have a different feeding tube placed in her stomach in a few hours, and we await further progress.  Her nerve test revealed that the damage to her nerves appears to be much more extensive than they originally thought it would be, and so it looks like we'll be working at this for months rather than weeks.  We will continue to rely on all of your prayers and support as we try to figure out what a new normal might look like, and we want you to know that we are humbled by the way you all have loved us throughout all of this.

A question of perspective...

Homeowners Associations are not wholly unlike the mafia.  You only sort of know who they are and what they do.  They extort money from you monthly and you always live in fear that you will trespass against them in some unintended way and something bad will happen.  You don't know what will happen, but thats part of what makes it bad.

I categorically pay our homeowners association dues three days late every month out of principal.    It has nothing to do with not having the money - I simply don't like giving it to them.  Just yesterday I got a bill from them with the handwritten letters "past due" on it.  I opened it up to discover that because of all of the things that have been happening over the past two and a half weeks I had forgotten to pay them entirely.  This caused me to pause and consider what other things I may have neglected over this time period.

As it turns out those other things were my (now expired) driver's license, and the registration and inspection on my car.  

These things would have been a big deal before any of this started.  I would have dutifully waited in line at the DMV and that other place where we have to get our registrations renewed, and it all would have been done in a timely fashion.  This morning I didn't care about any of them.

If you've had the pleasure of meeting our dog, you will know first hand that Ruth Ann is a licker.  Some dogs bark, she licks.  She loves her people, and so she finds a way to lick you even in unexpected and inopportune moments like when you're trying to put on your shoes.  Normally, this is a little thing, a minor annoyance sometimes, but largely unnoticed in the grand scheme of the day.  Today Emily was saying (still in mindreader-speak) that she was thinking about how nice it was to see Ruth Ann two Sundays ago, and to just feel her licking her hand.  To her that was a big thing.

So, here we have a question of perspective.  The things that used to seem important appear that they are not so important, and the little things have begun to matter.  Inches seem like miles, and the slow pace of recovery feels like it will take forever.  Today the doctors suggested that it may be time to begin thinking about moving Emily to a long term acute care facility where she can begin more intensive rehab while still being closely monitored while she is weaned off of the ventilator.  She is no longer in need of the critical care that the ICU provides, which seems to mean that the doctors feel she is at least stable. No word yet on the particulars, but it looks like the plan will be to move her within a week.

Emily is looking forward to this because it means several things.  First it's a change of scenery as this facility is at Durham Regional Hospital rather than at the Duke University Hospital proper.  It also means that she has gotten to a point that the doctors are looking ahead to recovery.  Moving from one hospital to another might seem like a small change, but it's a big deal to us.  We are learning to measure progress differently these days, and this seems like progress.

This is just a quick update with our all of the philosophizing today.  

Around noon the doctors inserted a tracheostomy into Emily's neck to take the place of the tube that had been going down her throat.  Not exactly a step forward, although it has allowed her to move her mouth and not to have a tube sticking out of it.  

One of the potential benefits of the tracheostomy (I know you're all thinking I'm spelling it wrong, but a tracheotomy is the procedure and a tracheostomy is the actual opening) is that it may be easier to wean her off of the ventilator.  The other benefit is that in a few days she may be able to talk a bit through a special valve.  This would help her mood I'm sure because her hands have become too stiff to sign and we're back to assisted telepathy (i.e. me going through the whole alphabet ad nauseam while she squeezes my hand when I get to the right letter and then I try to guess the words she's spelling)

She should be having another test tonight or tomorrow to help the doctors determine the extent of the nerve damage.  This will give them some idea how long it may take for her to begin recovery.

Emily's also getting tired of looking at me for 12 hours a day (who wouldn't?) so if you want to visit give me a call or send me an e-mail.

Dear Ephesus...

I'm beginning to understand the Apostle Paul a bit better these days.  At least I'm getting to know paul the prodigious correspondent, toiling away, writing letter after letter in hopes that he may encourage those with whom he was in ministry to carry on in his absence.

Of course I'm not writing from prison, as Paul often was, (although a hospital has a strange way of feeling like a prison) but I feel disconnected in much the same way.  In all of this, I've come to realize that one of the benefits of having a strong support system of family, friends and church is the knowledge that things will continue on.  Youth Group, for example, continues to function through the hard work and dedication of all the counselors and parents who are committed to that ministry.  This is both a comfort and a heartache to me.  I am glad that you all have stepped up to the plate, but I am the sort of person who loves to be doing things by himself, and so accepting all of this support has been a lesson in grace.

Today Emily has been faced with another tough decision.  She's been on the ventilator for 10 days now, and tomorrow she will meet with a doctor about putting a tracheostomy tube in her throat because it looks like she'll need the vent for a little while.  That elusive 40  on her breathing test has slipped back down into the teens.  This, we are now told, is not uncommon.  I wish we had been told this last week before we got our hopes up.  

The trach tube means that we'll be settling in for a bit of a slower pace.  We thought this would be a sprint, but it has turned into a marathon, and we have to re-adjust ourselves accordingly.  Now we have to try to work out some schedules, some routines, some paths to healing that allow for good and bad days, for work and for rest.  She can also begin to see a limited number of visitors (1 or 2 per day) if you're interested in coming by.  I ask that you pray for us in looking forward.  We trust that we will faithfully run the race that is set before us.

Finally, we're praying for all of you.  In every letter, Paul mentions how thankful he is for the prayers and support he has received from this or that church, and he says that they saints of those churches are continually in his prayers.  In much the same way we are thankful for all of you, and we are praying that all of you may have the strength to continue the race in our temporary absence.

I know that you're all checking this more than I'm updating it, but the 12 hour days are starting to catch up with me a bit, and my usual mid-day update window was usurped by a hasty run to the bank and a long overdue haircut (editorial note: I do not recommend hasty haircuts).

The haircut seems like an innocuous thing, but sitting in that barber's chair, I was reminded that a haircut was part of our Saturday plans two weeks ago, the day Emily was admitted to the hospital.  It is hard to believe that your whole world can change in two weeks.  

This morning, as I sat with Emily, she signed to me these words: "I took things for granted."  It broke my heart to hear her say that.  

Her breathing has not improved enough to get off of the ventilator yet.  This has been her goal for the last 4 days.  Every morning she tries her hardest on her breathing test, and so far every morning the doctors have decided that it's not yet time.  When I first see her she is hopeful, when she hears the news I watch that hope slowly drain away throughout the day.

This evening we decided that removing the ventilator would be a great outcome, but it's a lousy goal.  We came to the realization that perhaps we've been focusing on the wrong thing.  Her new goal is to be stronger each day than the day before.  If she needs the vent to do this, well then there it is.  If, as a result of her improving health, the ventilator is no longer needed, then that's an excellent result, but we're trying not to focus on it as a goal, because as a goal it has been elusive and discouraging.

One last word.  This evening I told her I didn't know what to write on here, and asked if she had anything to say.  It took her a long time to get all of this out so I'll end with Emily's words verbatim: "I feel so loved and supported by all of you.  Thank you, and please take care of Jim."  (I told her I wasn't going to add the last part but she made me promise.)

More of the same

We're sort of in a holding pattern here.  Things are not getting worse, but they're not getting much better either.  Emily is still on the ventilator - much to her displeasure - and will be for at least one more day.

Since I don't have much news to report I asked Emily if there was anything she wanted me to tell everyone, and she signed that she missed everyone.  It might not seem like much, but your support through your prayers, presence and support mean a great deal to us right now.  Paul says that sometimes when we cannot pray, the Spirit intercedes for us with "sighs too deep for words."  Perhaps the Spirit is also interceding for us through all of you.

 

I wish that I could say I had good news.  I wish I could say that the ventilator tube was coming out.  Unfortunately, I have no such news.  

Physically, Emily is about the same as yesterday.  Perhaps she is a bit stronger, but compared to the major progress she made earlier in the week, the last two days have been slow going.

She's still shooting for that magic number 40 on her breathing test.  She's been hovering around 32/34.  For you biblical and classics scholars out there you'll recognize the looming significance of that number 40 as literary code for a long long time.  (40 years in the wilderness for the people of Israel, 40 days and nights in the ark for noah and his unruly brood)  You see, in the Bible 40 never actually means 40.  It just means that it took such a long time that no one bothered to keep count and everyone was quite restless during the whole ordeal.  

It would have been a comfort if 40 actually meant 40.  There would be an actual, identifiable point sometime in the future to look forward to, and to which one might count down like a child counting down to Christmas.  When 40 just means an insufferably long time, it's a bit more frustrating.

Today, as I mentioned, has been frustrating.  The tube that was presumably coming out today remains in place.  Emily is breathing much better, and in fact doing much more of the breathing than the machine is helping with, but as a safeguard they are observing her for another day -- at least.  This is wearing on us, and especially on Emily.  I can see her disappointment and her frustration.  I am by nature a patient person, but this is also wearing thin.  I only hope that this wandering in the wilderness soon comes to an end.