We interrupt your regularly scheduled blog...

I know that if you're still keeping up with this blog, you've enjoyed hearing from Emily more directly over these past weeks.  I thought after she came home it would be easier to keep this thing up - that without all of the shuttling back and forth to the hospital I would somehow have more time to reflect on this whole thing - but as it turns out life is relentless and we've been just as busy as ever.  Now that Emily's back to work for a few half-days each week, and fall has kicked my church schedule back into overdrive it seems like the moments where I get to sit and reflect have been displaced by staff meetings, church councils, fall retreats, sermon writing and the like.

That is why I'm glad to report that just now I had a moment to stop and think.

I just met Jesus on Franklin Street.  Well, more directly I met Kevin, a man who is one of the many homeless residents of Chapel Hill.  

Kevin asked me for some spare change.  I didn't have any spare change because I never carry actual money anymore (and because Emily requisitions all of my quarters for the soda machine at work) and so I was tempted to just walk on by, but I stopped and explained my situation.

"How about a cup of coffee then?" he asked, and he was standing in front of Starbucks.

He had me.  I was on my way to Caribou Coffee to buy some coffee for myself.  How could I not spare an extra cup for this man?  I agreed to buy him a coffee if he agreed to come with me to Caribou (because friends don't let friends drink Starbucks) and he did.  

On the way we had a short, but pleasant conversation, and now both of us have coffee.  What really struck me is that in my interaction with Kevin I had the opportunity, in that Matthew 25 "sheep and goats" sort of way, to see Jesus.  And while Jesus never said "whenever you have given a cup of coffee to one of the least of these you have given it unto me" it was nice to be able to be a means of grace to another human being.

This story is my way of saying thank you to all of you who have supported us over these past months, and who continue to support us.  Each small kindness means the world to us.  It may not seem like a big deal to bring food by our house on a particularly busy day, but it is a moment of grace for us, and we deeply appreciate it.  As things settle back into something that looks a bit more normal, I pray that Emily and I can be means of grace to others half as well as you have been for us.

Prayers and Blessings

Prayer works.

Consider that statement for a moment.

Prayer works.

When a person needs the help of a ventilator to breathe, there comes a time when you have to be weaned off of the vent. I had been on the vent for about a month when my respiratory therapist decided I was ready to try breathing on my own.

My first trial off the vent lasted for 30 minutes. At the end of those 30 minutes, my lungs and all the muscles helping me breathe were completely worn out. It felt like that strange tightness you get in your when you've laughed to hard and you have to gasp for breath.

Two weeks after this first trial, my average hours of breathing unassisted per day hovered around 3. Even though I worked every day at keeping calm, taking slow breaths and ignoring the slow ticking of the clock, I really hadn't made any significant progress towards total freedom from the vent.

Discouragement loomed, compounded by a weekend where I was simply too sick and weak to even attempt any time off the event and I felt like I would never be able to breathe on my own.

That Sunday night, one of my regular night nurses, Mini, asked if she could pray with me. After dispensing my meds, she closed the door, took my hand and began praying aloud. Mini asked God for complete healing and for strength so that I could breathe on my own. Her prayer was simple and direct, and left me feeling more hopeful than I had in days.

On Monday, I stayed off the vent for 5 hours. Tuesday, I increased my time to 8. From there, I kept building each day, until Thursday I stayed off the vent for 24 hours. To go from a place of total weakness and dependence to a place of freedom and strength in less than a week was nothing short of a miracle -- a direct result, I believe, of Mini's prayer and the prayers of my family and friends.

That progress has continued by leaps and bounds. I went back to work this week part-time exactly six months after Jim and I went to the ER. That kind of recovery simply doesn't happen without faithful people praying for strength and healing.

I look forward to continued progress and to the complete healing that has been prayed for by so many of you. I feel like the paralytic man whose friends lowered him down through the roof so that he could be healed by Jesus. I can only praise God for the dedication of my family and friends and for His blessings!

Hodge Podge

Hello again, everyone. I don't have one thing to write about today, but several things to catch you up on. I've also included a couple of pictures. The first one is Jim and me (yes, that's grammatically correct even though it sounds weird, I wish they'd change the rule already) modeling this year's youth group t-shirt.

The second is me trying to act natural while Jim takes a picture of me standing up. Of course you can see by the sheer awkwardness of the picture that I failed miserably at acting like I wasn't in front of a camera. I only added it here so you could see me standing up. I wanted to give a preview so that no one would be overwhelmed by the sheer awesomeness that is me and my walker (which you can see in the bottom left corner).

Over the past two Sundays, I've been wowing all of our church friends with my impressive walking skills. It's been about two months since I came home from the hospital, and in that time I feel like I've become a completely different person. I'm using the walker more and more now, and with Jim's help I'm using our front steps to get in and out of our house.

Aquatic therapy went really well on Thursday. I had to walk forwards, backwards and sideways across the pool. I also had to do different leg exercises, like hamstring curls, kicks and heel raises. The therapist (who spends about 32 hours a week in the pool) said water offers 12 times more resistance that dry land. I definitely believe her, because I was really wiped out when I got out of the pool!

Not this Monday, but next Monday I start back to work part-time. My company is being really great and allowing me to come in for two half-days a week. I'll only be working a total of 7 hours, but I'm so excited to get back to my desk. Mostly because I bought a box of SweetTarts a couple of days before I got sick, and I want to see if they're still good. I also have a Page-a-Day calendar that's probably still showing March.

Okay, so I'm only partially kidding about the SweetTarts, but it will be nice to get back into a normal routine. I can't wait for people to ask me if the coffee is fresh and if I brought the cookies. I also can't wait to complain about my computer being slow and ask my cubicle mate if it's five o'clock (or, in my case, 12:30) yet.

I'm also very excited to announce that Jim will be preaching on Sunday, Sept. 27 at both the early and late services. Everyone is invited out to hear this rising superstar in the Methodist church. There's no word on what he'll be speaking about, but I'll keep you posted as things develop!

More Walking and a Little Fishing

Today I left the wheelchair in the trunk of the car and just used my walker at church. I felt pretty confident that I could get around with out too much trouble, but I definitely over did it distance-wise. My ankles, knees, hips and back are protesting, and I'm sure it will be worse tomorrow.

A few people have asked me if I have any pain when standing or walking. In case you're wondering, but are too nice to ask, the answer is no, not really. My feet are still pretty numb, so when I stand up I can feel pressure in my heels but not in my toes. It's a very strange feeling, and it makes it hard to balance or tell where my feet are in space.

Getting around in the walker is definitely a sign of progress, and this week my therapist had me do a walking test to see how fast I am in relation to scientifically established averages. I had to stand up, walk 10 feet, turn around, walk back and then sit down. This took me about 50 seconds. The average person can do this in about 10 seconds. So I'm currently five times slower than you.

Even though I was worn out from my exciting morning, Jim and I took the wheelchair off-road to go fishing at our friend John's house. Well, Jim tried to do some fishing, but Ruth Ann had other ideas. Jim let her off leash, and she had the most wonderful time running around with the neighbor's dog. She also discovered how to dog paddle and how to jump in the water and retrieve. I had a great time sitting by the lake, enjoying the beautiful view and watching Ruthie splash around.

This week I start aquatic therapy! In addition to my regular PT, I'll be adding one session a week in the pool. It's nice because you can work on stretching, strength training and endurance all at once.

33 Meters, or How I Learned to Walk Again

On Thursday, I walked approximately 33 meters in PT. The route started at the parallel bars, went all the way down the length of the gym, turned at the front entrance and concluded at the parallel bars. 33 meters -- despite a switch from floor tiles to carpet and back, and the one wheel on the rolling walker that just didn't understand it was supposed to roll in unison with the other one.

My therapists are truly great at what they do and have managed to challenge me while at the same time respecting my limitations. That balance of work and rest is not an easy one to find. My condition has been frustrating in many ways, but currently the biggest obstacle I'm facing is fatigue. I can feel really great one day and totally just-ran-a-marathon drained the next. Sometimes it's because I've pushed myself too hard, but other times there's really no way to account for why I don't have any energy.

My therapists understood from the beginning that while total independence was my personal goal, strength and flexibility had to come before I could try to stand or even take my first (wobbly) step. To get me where I wanted to be, my therapists started me out with tiny leg movements where they did most of the work. This gradually led to complex tasks that involved more than one muscle group where I had to do all the work.

I'd like to think that from this experience I know more than the average person about physical rehabilitation and therapy. But in all honesty, I probably don't know that much. What I do know is that if I hadn't had such caring and compassionate therapists working with me, I wouldn't have been able to make it this far this fast.

And speaking of how far I've come, my doctor has given me clearance to start working part-time on Sept. 21. I don't know if the 21st will be my official first day -- I still have to work out all the details. However, the date that my doctor randomly picked just happens to be exactly six months from when I went to the ER at Duke. Ain't that somethin' else?

21 Feet

Emily here -- with some good news. Today in physical therapy, I walked for 21 feet using a walker and with the aid of my therapist. About 10 steps into my walk, I asked if they could get Jim so he could see. Once I finished, everyone in the gym clapped and I felt like a conquering hero.

When I can go 50 feet on my own without collapsing unexpectedly or being overly tired, I can graduate to the walker. It'll be nice to have a little bit more freedom, although I will most likely have to continue to use the wheelchair for longer distances.

I haven't walked any real distance since being admitted to the hospital in March, so 21 feet is a small, but thrilling triumph.

Stay tuned for more updates!

Emily's First Self-Authored Post

Today Jim asked me to take over writing the blog. When I expressed concerns about writing as well as he has, Jim encouraged me by quoting Hemmingway: “All you have to do is write one true sentence. Write the truest sentence you know.”

My true sentence is that things are going well – really well. After days and weeks of what seemed like tiny improvements, I feel that now I’m getting better by leaps and bounds. I can flex both ankles and wiggle my toes. My legs move a little better each day, and I’m now standing (with assistance) for short periods of time.

I can’t wait to get back to work and to the co-workers who have been so supportive through this. I’m also looking forward to getting involved again in church and youth activities. But before that can happen, I still have a ways to go in terms of recovery.

The nerves in my hands haven’t quite regenerated, so I’m continuing to work with my occupational therapist on my fine motor skills. I’m also working intensely with my physical therapist on strengthening my legs with the goal of being able to take a few unassisted steps very soon!

I’ve started writing thank you notes, but it’s taking me a while to work through the list due to my limitations and the seemingly infinite list of people to thank! Whether it was a card or casserole, your prayers or presence, each of you has made it possible for Jim and me to make it through the most difficult time of our lives together.

Take care everyone and I look forward to sharing more good news with you in the days and weeks ahead!

The battle of Waterloo...

The Duke of Wellington is generally credited with saying that "the battle of Waterloo was won on the playing fields at Eton."

What he's saying, of course, is that the character and ability of the soldiers who won the day at Waterloo was not something innate, nor was it a collection of spontaneous heroism.  Instead, he was intimating that, through the sort of perseverance and teamwork that they had learned at Eton, the character of these soldiers had been formed in such a way that they were able to do what needed to be done when it needed to be done, and that this exhibition of character was possible only as the result of habit.  

Throughout this whole ordeal, the one question that has completely baffled me is when people say to me "How are you dealing with this?" or "How can you hold it together with all of this going on?"  

Honestly, my only answer to this has always been, "how could I do anything else?"

As I recollect, I didn't really have many choices in the matter.  There was something that needed to be done and I did it.  I don't think that I ever did anything heroic, I just did what I knew to do.  I'd like to think this is because of my character, but I know that that's not even anything special.  I am who I am because of the sort of habits of character that I have developed over the years, and I am thankful.  I have learned from my family, my friends and my faith the lessons of perseverance, and strength, of love and patience, of endurance and hope that have made me the sort of person that I am.  I pray that it has been enough.

I think I prefer Paul's version of the sentiment in Romans 5:1-5

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ through whom we have gained access by faith into this grace in which we now stand.  And we rejoice in the hope of the future glory of God.  Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

These past four months have been one strange detour on the path of life, but it is in these instances that we have the opportunity to learn who we really are.  I do not think God plans these sorts of things, but I do think God often uses these sort of instances to help us grow and to remind us that we are not alone in this thing called life.  

Today, we walked back into Duke Hospital for Emily to have her g-tube removed.  Sitting in pre-op brought back some tough memories as I watched them connect her to IVs and telemetry machines.  As she sat there in her hospital gown she began to cry a little as she thought back through all that we've been through, but we both realized that this was one of the last major marks of her recovery.  The feeding tube was one of the first things put in, and the last to come out, and it represented a whole host of difficulty that she has overcome.  

She told me that the last thing she remembered before going under was trying to recite T.S. Eliot's The Love Song of J. Alfred Prufrock.  Before she went under she got out the words:

Let us go then, you and I,

When the evening is spread out against the sky,

Like a patient etherised upon a table....

And the next thing she remembers she was waking up and trying to get all of the nurses to hold her hand.

All of that is to say that her g-tube is out, and so is Emily, napping comfortably on the couch at home.

Fortune Cookies

I realize it's been a week since I said that I would update this blog, but this week has been far busier than either of us anticipated.  Good, but busy.

On the way home from church on Sunday we stopped for some Chinese food.  We all know that the best part of getting Chinese take-away is the fortune cookie, (although as of late fortune cookies have been less "fortune" and more like "vague affirmation" cookies) and the fortune in this particular cookie seems appropriate to share with all of you as a comment on our situation.

It said:

Absence sharpens love, 

but presence strengthens it.

Being apart from one another made it abundantly clear how important we are to one another, but being back together is wonderful.  Emily joked as we were on our way home that she walked out the door one day, and 4 months later she rolled back in.  She's right.  I noticed after she was home that there were still decorations from St. Patrick's Day sitting around the house.  These last 4 months have been like a giant black hole and it's nice to be getting back to something like a normal existence.

Emily is home

As of 12:30 today, Emily is back home.  It has been a wonderful day, but it has also been a long and tiring day.  

I'll have to beg off writing more at the moment, but I promise I'll write more tomorrow when I get a chance.

Head, and shoulders, knees and toes...

My ability to keep up with this blog has been inversely proportional to how busy I've been over the past few weeks, so I apologize for the fact that the updates have become fewer and father between.  On the other hand, you could think of it in the old "no news is good news" category, because between preparing for two mission trips, writing a sermon, and schlepping back and forth to the hospital every day, I've had precious few moments in the blogosphere.

There are some moments, however, that are significant enough that they demand I pause and take the time to update y'all.

Today, that moment came when Emily realized she could wiggle the toes on her left foot.

I know that doesn't sound like much, but it's a big deal to us.  Guillain-Barré Syndrome presents itself differently in every case, but the general pattern of the condition is that it works itself up from the feet to the head, and recedes in the inverse order.  Emily first noticed that her legs were weak when we were walking up to the balcony after the intermission of Fiddler on the Roof.  By the next day, she was having trouble balancing, and by the third day she couldn't stand on her own.  

The condition progressed from there, upward to her chest and lungs and finally to her face and head.  The first improvements came in her facial muscles, and over the past few months her nerves have been re-growing themselves (at the rate of approx. 1 millimeter per day).  Her legs, as expected have been the last to show progress, but even there she has been growing stronger down through her quads to the point that she can kick her legs out while sitting.

It has seemed, however, to take an excruciatingly long time for anything below her knees to return.  We've anxiously awaited some sign that the nerve re-growth had progressed below the knees and today we've seen that sign.

That is why the wiggling toes are so monumental.  

They are the sign that she will soon start experiencing more restoration in her lower legs, and they are a welcome sign at that.

Mixed blessings

First off, a big thank you to all those who made it out last weekend to transform our back porch into a wheelchair ramp. It was amazing how many people turned out, and how quickly everything came together. I'm happy to say that Emily now has a way into the house, and everything is ready for her to come home.

Her discharge date, however, has been rescheduled from July 7th to July 14th, mainly because she is responding so well to inpatient therapy that the doctors and therapists want to capitalize on her momentum and help her make as much progress as she can.

You might thing that this delay would be upsetting to Emily, but she's actually happy about it in some ways. She said that while she wants to come home as soon as possible, there are a few things that she would like to achieve that would make her feel a little more independent upon arriving at home, and so she's happy to stay and work a little more.

As it turns out, I'm probably more disappointed about this than she is. I would be lying if I said I wasn't excited to bring her home next week, but as it stands I'm also happy to bring her home as soon as I can, so the 14th will have to do.

This delay has unintentionally posed one other challenge. The 14th is right in the middle of the time when our High School youth are supposed to be on a mission trip to Washington DC. I've been excited about this trip for a while now, so as you can imagine, the conflict has been a bit disappointing, but even in this there is unexpected blessing. The other adult chaperones are prepared to lead the trip without me, and as of yesterday there is even an additional chaperone who will take my place.

Just as I was trying to figure out what to do, I received an e-mail from a youth counselor who was excited about going on the mission trip. I don't know if it was Emily's illness, or just my forgetfulness, but I had inadvertently left this person off of the mission trip roster. It seemed like a sign that just as I was trying to decide whether I could go or whether I would have to leave my spot empty, God provided someone to fill the position. As I will miss the experience it is a mixed blessing, but a blessing none-the-less.

God is good...

Jim

I shall call the pebble Ted...

Some nights I have a lot to say, some nights I'm tired.  This is one of the latter sort.

I just finished typing out a list of every doctor/provider/hospital/diagnostic clinic that Emily has been to in the last year.  I didn't do this for fun.  Apparently the insurance company thought I needed something to do in my spare time.

My work was made a lot easier by the fact that while I was at church today, my mom (who has been an absolute saint throughout all of this) sat and copied all of this information off of the bills that I had saved in a box.  I was reminded once again how much Emily and I have had to depend on family and friends to get us through this period, and how this dependence has given us a new lesson about God's grace which we have experienced through all of you.

As you know by now, Emily is still on track to come home on the 7th of July.  There are, however, a few things that need to occur between now and then.  I need to hang a new door into our bathroom so that Emily can get a wheelchair in there, and we need to put a ramp on the back of the house so that Emily can get in to begin with.

Tate Hamlet has experience in this area and has agreed to be the acting foreman on the site, but we need hands to dig, carry and nail.  (Oh, and someone to move some plants from one flower bed to another).  I know that I've heard from a few of you, but as a general message, if you'd like to help, we'll be working on it this Saturday starting at about 3 in the afternoon and finishing up Sunday afternoon.  I'll have a cooler full of water and Gatorade.  

While I've been working all of this out, Emily's been at the mall.  That's right, today she spent the afternoon at SouthPoint mall as an outing with her therapy group.  She said she had a veggie wrap at at Great Wraps and all-in-all had never been so happy or grateful to be in a mall in her entire life.  I guess I'll give her that one  :)

G&P

Building things

I have been both frustrated and amazed at Emily's recovery.  In one sense it is miraculous that her body is rebuilding itself and she is growing stronger.  On the other hand, this has been an excruciatingly long miracle.  That tension of blessing and frustration has marked this entire ordeal.  

It's sort of like the old Irish "but still..." as a literary device.  If you've ever heard an Irish person tell a story, you'll immediately know what I'm talking about.  The story in question can be the most heartbreaking tale of woe and loss, and just when you think it couldn't get any worse, you hear the storyteller utter the words "but still" and all of a sudden a bright spot appears.  In condensed version this might sound a bit like (read in an Irish brogue)"Me mother died, and me potato crop failed, but still, those that's living are together now and I'd be lyin' if I said that this sunrise doesn't lift the soul and raise me spirits"  

Yesterday Emily got into her wheelchair, and she and I stopped by the coffee shop downstairs in the hospital, and spent some time outside in the garden.  It was nice to mark all of the progress that she's made with a moment of quiet relaxation, but we couldn't help talking about the kind of changes we'll need to make around the house, and in our lives, when she comes home.  These changes are temporary to be sure, but they're no less real, and no less daunting.

That's the primary reason I'm writing this today.  It looks like we're going to need to build a ramp onto the back deck of our house.  I know how to do this, but there's no way I can haul the lumber and do all the work myself, so I'll need to get a crew together.  I'm putting this up here first because I've had a lot of offers to help with this project, but we only have two more weekends before she comes home, so it's probably time to organize.  I've taken some measurements, and come up with some ideas based on building code, but I guess I could really use someone to lead the effort and figure out how much it's all going to cost, etc.   If you are interested in helping, or organizing the effort, you can e-mail or call me in the next few days and we'll see what we can get together.

Thanks

...and miles to go before I sleep.

It looks like it's official; Emily's discharge date is still planned for July 7th, and while I realize that nothing is ever a done-deal in the hospital until it actually happens we've got pretty good reason to believe that this one will come through.

How can I know this?  Well, Emily's still got her feeding tube, although she's not using it, and after many weeks of asking when it will come out, the doctors at UNC informed her yesterday that she'll have to go back to Duke to have it taken out.  This seems a little ridiculous, but apparently none of the surgeons at UNC will take it out because a surgeon at Duke put it in.  This isn't a basketball thing I assure you.  I understand that it has something to do with liability issues, but, really, we have to go through this yet?  

So her doctors here made an appointment for her to have it taken out at Duke on the 8th, and so that's how I'm so sure we'll be out of here by the 7th.

On one hand it's not a big deal because it poses a moderately low risk of infection, but on the other hand it's also a pain in Emily's butt, err, maybe a pain in her stomach.  It reminds her of just how bad things were, and I'm not sure she's emotionally ready to think back through all of that yet.

A friend's blog post unintentionally gave me some food for thought this week.   Her post title was "On the Willows" and I know she was referring to Godspell, but that psalm reference always haunts me.  It is, of course, a nod to Psalm 137: 

By the rivers of Babylon—
   there we sat down and there we wept
   when we remembered Zion. 
On the willows there
   we hung up our harps. 
For there our captors
   asked us for songs,
and our tormentors asked for mirth, saying,
   ‘Sing us one of the songs of Zion!’ 
How could we sing the Lord’s song

   in a foreign land? 

That last refrain is really what gets me, and what I've been thinking about this week.  This syndrome has literally held Emily captive for the past three months.  In a metaphorical sense I have also often felt a captive to these circumstances.  We have had to hang up so much that we are, and so many things that we have been doing, that we have had to constantly re-negotiate our identities in the face of this thing. 

The writer of the psalm laments that the people of Israel have had to endure captivity, and learn what it means to be God's chosen people who were also mysteriously and inexplicably enslaved to the Babylonian empire.  We have had to consider what it means to be faithful to a gracious and loving God in the face of a mysterious and inexplicable captivity to this illness.  We have had to ask ourselves time and time again how in the world we can sing the Lord's song in this foreign land. 

It has not been easy.  

We are, however, returning from that exile, and Emily makes progress every day.  Her upper body grows stronger, although her legs are taking longer to get the message.  I understand that nerves re-grow themselves at about the rate of a millimeter per day, and if you consider how many millimeters of nerves you have in your legs, it becomes easier to understand why this is taking so long. 

All of these thoughts come back to the issue of the feeding tube.  It's not really hurting anything, but it is a reminder that, while we are returning from exile,  we are not back yet.  In the face of this exile it has been our family and friends that have helped us remember what the Lord's song sounds like, and it has been good for me to keep you all updated through this blog.  These posts will probably become more infrequent over the next few weeks because I will need to spend more hands-on time helping Emily, but I'll try to keep you all as up to date as possible.As always, we love you all and continue to ask for your prayers.

news

Yesterday was our 7th wedding anniversary.  It seems strange to mark milestones like birthdays and anniversaries in the hospital, but we do what we can.  One thing I can do, is try to catch you up on the news with Emily.  Emily hates it when weather forecasters say that the weather is going to be a mixed bag, but that just about sums our situation up.  Sometimes, news isn't good news or bad news however ... it's just news.  

Speaking of standing, Emily was able to stand a bit the other day with the help of a special machine that held her up.  She said it wasn't as bad as she thought it would be, but the ground is much farther away than she remembers.

Emily has been making great progress over the last few weeks.  Her dexterity and strength (especially upper body) continue to improve.  Not only can she brush her own teeth and comb her own hair again, but she can sit by herself on the edge of the exercise benches in the gym for an extended period of time.  She called me just this morning to tell me that she just realized she has the capacity to flex her left calf.  Her restoration has been fairly bilateral, and so I expect the right calf to get on board in the next day or so.  She's almost in a regular wheelchair again (she tried one out for a while today) and she said it's nice to have a little more freedom.

While she was on the phone she also mentioned that the Doctors are considering delaying her discharge to the 7th of July, not because she is doing poorly, but because she is making such strong progress.  Yes I know this seems counter-intuitive, but it appears that the doctors feel like that extra week could be very beneficial to her.  Perhaps they are thinking that instead of discharging her early in a wheelchair they would like to shoot for something a bit more ambitious?

She was a little bummed about the delay, but also happy that the doctors at UNC are really responsive to her individual capacities and needs.  I must say, it's nice to have real doctors again.  The Doctors at Duke were top notch, but while the respiratory therapists and nurses at the previous hospital (Select Specialty) were great, the doctors left something to be desired.  (Apparently all you had to do to be a doctor at Select was wear a white coat and have internet access for WebMD).  We trust that her current therapists and doctors have a real vision of wholeness in view for Emily.

Anyway, that's what's going on these days.  Yesterday she told me her occupational therapist had her trying to type on a computer.  I told her that as soon as she gets that mastered she can take over.  Emily's the real writer in the family.

Grace and peace

naptime

Right now I'm sitting in Emily's room, trying to type as quietly as possible because she's taking a nap.  I hate taking naps, but Emily is a champion napper.  She doesn't have any awards for napping or anything, but if they made such awards she would surely be in the running.

When I arrived at the hospital today, she was just dozing off, and said she was planning on sleeping for a little while.  She told me that she was tired, and that although she feels like she's made a lot of progress this week, she also feels like she may have hit the GBS wall, and now she needs to rest.

She really has made a lot of progress this week.  She's definitely stronger in her upper body than she has been, and she even practiced a few transfers from her wheelchair to the work out benches in the gym.  She still needs a lot of help, but each day she can do more for herself.

We're still looking forward to her possible return home in the next three weeks, and hoping that we'll have the resilience to navigate yet another major transition.  Honestly, I can't wait for her to come home no matter how much extra work that will be for a while.

We'll probably really need all of your help and encouragement through that transition, but we'll  have a better idea of what that help might look like in the next couple of weeks, so I'll keep you up to date.

Tonight we'll be relaxing and having something of a date night, watching a movie and eating some popcorn!

chapel hill ninjas

So, as I was leaving our worship planning meeting at church today, I looked out on the front lawn of the church and I saw a ninja.  I felt reasonably proud of myself, because if you know anything about ninjas (and I'm speaking as an expert here because I've seen a lot of movies with ninjas in them) you're not supposed to be able to see them.  Their main goal in life is to not be seen, and to do nefarious things while not being seen.  

I pointed said ninja out to a few co-workers, and soon, there was a second ninja.  

Speaking again as a ninja expert (see credentials above) I would say that in my professional opinion these were probably not real ninjas, but rather teenage boys engaged in some sort of ill-fated and inevitably regrettable shenanigans.  Anyway, I only mentioned the story about the ninjas because they reminded me that every once in a while you get an unexpected glimpse of the invisible, and sometimes it makes your day.  The "end" of this whole ordeal has been elusive to say the least.  For weeks we had no idea when this might end.  Weeks turned into months, and the months have dragged on.  Emily is about 11 days shy of being in the hospital for 3 months, and the light at the end of the tunnel finally seems like it is moving a bit closer.  Sometimes we feel like we might be catching a glimpse of the restoration to wholeness that we have been praying for.

I'm spending most of my creative energy on sermon writing this week (and thus you get a post about ninjas), but I did want to tell you about some of these glimpses and update you all on Emily's condition.  In a few words, she's doing much better these days.  As much as she wanted to eat real food again, not having eaten it for two and a half months meant that she had a bit of a rough transition back to eating.  Her stomach was giving her some trouble, and if you've ever had a bad stomach ache, you know this meant everything else seemed immeasurably more difficult.   She's overcome that difficulty, and is awaiting the final removal of her feeding tube.

Her tracheostomy is finally out, and mostly healed, which has been a big encouragement to her.  Rehabilitation is slow, but she is making progress.  I joke with her that she spends all day with her personal trainers working out, but she is taking this business of getting better very seriously.  She still can't move anything below her knees, but she's starting to get more feeling back in her feet, so we hope that's a good sign.  She still may need to come home in a wheelchair, so I might need to recruit a team to build a ramp onto the back porch in a few weeks.  The doctors are hoping that she will be discharged sometime before the 28th of June, and we hope that's the case, wheelchair or no wheelchair.

some days it rains

I do not know that this is meteorologically accurate, but when we moved to North Carolina five years ago I recall that it was a particularly rainy fall.  It seemed like every other day there was a torrential downpour, and this climactic condition was exacerbated by the fact that I had to practically walk from one end of Duke's campus to the other to get from class to my car with nothing but a miniature Totes umbrella to shield me from the deluge.

Justin, if you're reading this, I know you'll know what I'm talking about.

In any event, I decided that before the following school year started I would go buy the biggest and most wind resistant umbrella that I could find, and I did just that.  I bought what I believe to be the zenith of years of tireless umbrella engineering.  I take up a fair amount of space in this world, and there's nothing more annoying than an umbrella that almost covers you - the sort where you arrive at your destination and your body is dry but your left arm is soaking wet.  My umbrella, however, does not have this problem.  When you open it it's roughly the size of South Korea, and so it shelters me quite well.  As it turns out, however, it hardly rained at all for the next two years after I bought it, but I am a patient man and I knew that my umbrella's time would come.  And so it did - today.

It has been absolutely pouring all day, and so today as I waited for the bus to take me from church to the hospital I was extraordinarily grateful for my huge umbrella.  It would be too easy  to allegorize this whole GBS nightmare as the rain, and God and our family and friends as the umbrella, so I'll refrain.  I will say, however, that it reminded me once again to be grateful for small blessings in the face of adversity - a lesson I have learned all too well in the last few months.  

Some days are easier than others.  Since we've moved to UNC Emily has really been enjoying rehab (well, as much as one enjoys that sort of thing).  She has grown stronger each day, but there are still days that are hard.  Today the doctors said that they may discharge her in a wheelchair, and that she would need to continue to learn to walk in outpatient rehab.  She was a little discouraged by the thought that she might not walk out of here, and so was a little down when I got here.  The rain, it seems, is again an appropriate metaphor for her spirits today.

This thing has certainly had it's ups and downs.  Each day is filled with successes and new challenges, but thinking back through this whole ordeal it is almost amazing to see just how far we've come.  Three weeks ago Emily was on a respirator, not speaking, barely mobile.  Today her therapist got her into a wheelchair and took her downstairs to the coffee shop so that she could get a long awaited iced vanilla latte, and sat with her for a while in the butterfly garden.  

Every once in a while - even on rainy days - the sun breaks through.

a long awaited flower.

If you've ever visited my office, you may have noticed a rather large and ungainly plant sitting on my window sill.  At first glance you may wonder why I would keep such a plant.  It looks like a random collection of stems and leaves with no discernible pattern or structure and nothing that particularly draws attention to itself.  With this last thought in mind, perhaps you could visit my office a hundred times and see this plant without ever really taking notice of it.

The plant is a night blooming cereus, and if you were in my office right now, however, you couldn't help but notice the plant because it is blooming.   This homely and otherwise unremarkable plant produces some of the most beautiful and fragrant flowers I have ever seen - if you've never seen one it will literally take your breath away. 

 

Sorry for the cell phone picture, but it's all that I had with me when I stopped at my office to check on it tonight.  It'll give you some idea of what this massive flower looks like:

Thanks to our friend Flora, Emily has had one of these around ever since college.  I've since started several plants off of the original (which met an untimely end due to an early freeze) and so you might think of this as the grand-daughter of the original.  In all that time it took nearly 5 years for the original plant to bloom, and though we have seen them bloom several times by now five years is a long time to tote an ugly plant around.

I guess seeing this bloom tonight made me think of how much we appreciate things for which we have had to wait a long time.  Emily has been waiting for two and a half months for a Coke and tonight she finally got it.  After a few sips a quizzical look came over her face and she said:

"It tastes different than I remember."

She enjoyed it all the same.  She also enjoyed her first real food since she went into the ICU - chicken parmesan.  From this news you can probably tell that she had her swallow study today, and is officially swallowing like any other normal 29 year old woman.  She was very proud of this fact when she came back from her test, and she was excited to be getting real food and drink again.

Today she saw recreational, occupational, physical, and speech therapists, and by the time I arrived this afternoon she was worn out.  She's growing stronger each day, and is excited about all of the challenges and possibilities of rehab.  She's also looking forward to visitors, so if you happen to be around UNC stop by the 7th floor of the Memorial Hospital and say hi.

As a side note and a proper end to a post about a flower, Emily can also finally have real live flowers again, although she has greatly appreciated all of the creative ways that people have smuggled fake flowers and pictures of flowers into her room.

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.

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