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.