The Score

From the first day I was in the hospital, my nurses, therapists and doctors tried to make it very clear that recovery wouldn't be a straight shot, but would have ups and downs and plateaus along the way.  I always nodded yes, but secretly I wondered if I might be able to get around all that and just continue on a smooth, direct route to recovery.  The answer: A resounding no.  I'm afraid that's just not how it works, kiddo.

To be clear, there haven't been any huge setbacks so far.  Overall progress has continued at a steady pace and I'm definitely stronger now than when I arrived home two weeks ago, but it still feels like my life has become an unending game of tug-o-war against Guillain-Barré, where if I pull too hard or try to extend beyond my limits, Guillain-Barré pulls back and leaves me wiping the dirt off my knees.

There was a day early on when I woke up feeling strong and thought, "Yes!  Today I am strong!  I will completely rebuild my hamstrings!" I strapped on my little ankle weights, laid down on my stomach and proceeded to do all the kicks I could, then tried the different bridging exercises my therapist had shown me and threw in a few bicycles at the end for good measure.  After I managed to get myself up off the floor, I showered, had lunch at a friend's house, came home, and then passed out on the couch with headaches for the next day and a half.  GBS: 1, Emily: 0.

Some days it's pure foolishness; other days it's the heat, or lack of sleep, or a failure to reach sufficient calorie intake that makes things that seemed easy the day before suddenly feel enormously tiring.  Endurance is the name of the game, and when, as one therapist explained it, you've got less gas in your tank, you've got to be smart in the way you use it, but that's hard when you don't know how much gas you've got on any given day and something that might have been within your modest limits the day before is just not a possibility the next.

If past performance is any indicator, I'm probably going to keep losing some battles for a while as I  figure things out, but never doubt it: this war is mine in the long haul.

Phase Three: Running Forward and Looking Back

Today I go home.  After two weeks in acute care and a month of rehab, I am now able to transport myself short distances with a walker and climb stairs with the help of a railing or an arm.  I can bathe myself with minimal assistance and get myself on and off the toilet on my own.  My speech is intelligible and the smile, though crooked, is definitely a smile.  I never dreamed I would be here so soon.

The big mile markers are going to be few and far between from here on out, and progress will be more incremental and measured in increased endurance and strength as I gradually develop the stamina to return to normal.  There won't be many exciting breakthroughs to report on a daily basis, but there will be time to sit on the porch and do some mulling over of this time spent between my two worlds.

A lot of this will be backtracking to things I experienced before I was strong enough to write or had enough time to process, and it will be as much for me as anyone else.  I bend my knees now without thinking, and walking will soon be the same, so there's an urgency to get these past weeks down in writing before forgetfulness sets in and the wonder fades away.

But no more sitting in front of the computer today.  It's time to celebrate!

Home

Progress has continued to exceed expectations, and after yesterday's conference between my therapists, nurses and doctors, I was told that I would probably be free to leave by this Friday.  I had anticipated that they would cut down the remaining time from the three to five weeks they'd told me after the previous conference, but I was pretty stunned that I could potentially be out in just a matter of days.

And then I started to panic a little.  Not because I didn't think I'd be ready physically -- that would come -- but because I was afraid I wasn't going to have enough time to say goodbye to all the nurses, learn more anatomy, explore more of the hospital, better document the equipment used, order gifts for my therapists, and come to terms with leaving my high-tech hospital bed.  In short, this had become my little world and I wasn't sure I was ready to leave it.

We had requested that my physical therapist and occupational therapist come to the house before discharge to go over strategies for getting into the house, showering, using the stairs, etc.  Jacki and Amy scheduled it right away for this morning, so we all headed downstairs at 8:30, and after a month and a half, I took my first breath outside the hospital compound.

The visit was a little overwhelming.  I hadn't been home since January, and now had to climb a full flight of stairs and maneuver my walker around corners and over thresholds with two therapists in tow.  I never dreamed simply living at home could require so much more energy than therapy, but I was exhausted by the end of our short visit.

Even so, as we drove back to the hospital I realized I didn't need to bump back my return date.  Therapy had served its function, and I had learned a lot and met some great people in the process.  But this was not my world.  The hospital was merely a short step towards healing, not a stopping point, and now it was time to get back to business.

Fall Risk

During my initial PT evaluation in rehab, my therapist noticed a yellow bracelet from Acute Care on my arm with the words "FALL RISK" and gave it a disapproving look.  "You're not a fall risk," she said.  "Those are for people who forget they can't walk and try to get out of bed on their own.  You're weak, but you're conscious enough to know that and not get yourself into trouble."

That, plus the fact that I couldn't have rolled myself out of bed if I'd wanted to and didn't anticipate that I would suddenly forget my physical limitations, did make the bracelet seem a little unnecessary, but I left it on anyway, if only because it made people laugh who knew my preexisting condition of poor coordination and tendencies to trip and run into things.

Over the past few days, though, I've started to see myself becoming a legitimate fall risk under Jacki's definition.  One afternoon, frustrated while trying to back up in the wheelchair, I caught myself preparing to stand up and walk behind the wheelchair to move a cord out of the way. On another occasion I had to stop myself when I realized I was halfway off the toilet and plotting the best route around the walker and wheelchair to the sink, having forgotten in both cases that the very reason I was in the wheelchair or surrounded by strange equipment in the bathroom is that I cannot stand and walk on my own.

Riskiness aside, it feels good to sense my limbs remembering the effortlessness, the nonchalance of instinctual actions like standing up to move something out of the way or maneuver between obstacles, which in the past month had become foreign and unnatural.  And it is astonishing to think that soon I will be free to carry out these complex motions on my own without a second thought.

Scale

Yesterday I emailed a friend and made a joke about already being up and riding my bike, and he sent back a sweet response congratulating me and saying how liberating it must be to be out of the hospital and feeling the wind at my back.  The truth is that progress has been constant, but I am still in the hospital and nowhere near being able to hop on a bike.  And the email exchange made me realize how hard it is to understand what could possibly require two months in the hospital if I am improving as much as I claim I am.

The answer is that the distance between a partially paralyzed state and being able to ride a bike is both incredibly long and incredibly short.  Time-wise, I am astounded at how quickly that distance can be covered under the right circumstances, but I am equally amazed at all of the tiny changes that must take place to arrive there.

Take my legs for instance. When I first arrived in rehab three weeks ago, I could either lie in bed or sit in my wheelchair with my feet held up by leg rests.  I couldn't lift my legs off the foot pedals or put them back on; unable to bear weight on my legs all I could do was hold on when someone lifted me from where I sat on the edge of my bed to pivot me into my wheelchair; I often nearly screamed with frustration when I was left on the toilet and could not lift my legs enough to shift on the plastic seat; and once I was tucked into my bed for the night, I could not move my legs to adjust my weight or turn on my side.

In the first week of physical therapy, the daily regimen of exercises consisted of placing my legs over a bolster then trying to use my quads to lift my foot a few inches off the mat, as well as working at pulling my feet towards my butt to raise my knees into the air, and turning on my side with one leg raised up on a powder board -- a smooth, low table -- with a leg skate to eliminate gravity and allow me to begin relearning movements while my legs gained strength.

When this is your starting point, small but significant victories can occur every day before you even begin to think of triumphs like standing up alone.  One day it is waking up to find that while you were sleeping on your side, your leg straightened itself out on its own.  (You have to ask someone for help if you want it returned to its previous position, but still it is progress.)  Another day it is feeling your heel suddenly kick back on the powder board after several sessions that nearly pushed you to tears because you could not will it to move even a half centimeter no matter how hard you tensed.  And when on Saturday my heels suddenly pushed my knees into the air while I was waiting for my therapist to track down a piece of equipment, I got the kind of thrill you'd expect if I had just leapt to my feet and walked home.

This past week the many small changes in isolated muscles -- lifting a knee, raising a foot, moving my ankles like windshield wipers, straightening a leg -- have suddenly come together to produce the kind of recognizable progress that we are accustomed to using to measure improvement. I can push myself up from my chair and steady myself enough to barely need the help of a handrail. I can walk 50 feet with a walker. I can transfer myself from my wheelchair to another chair or my bed. and I can step up on a four-inch step.

And I admit that even I start to wonder what's left to be done that can possibly require another three to five weeks in inpatient therapy and then outpatient, but then I remember this morning's PT session when I was told to try walking sideways and nearly came crashing to the floor as my knees and my hips went shooting out in twelve directions at once, and I can only imagine the steps, both large and small, yet to be taken in the weeks and months ahead.

Raise Your Left Eyebrow

This morning, after nearly a week and a half with no muscle movement on my face, I thought I saw a tiny flicker of life while brushing my teeth. Moving closer to the mirror I saw that my left eyebrow had in fact lifted an eighth of an inch. This was it!  First an eyebrow raise, next the ability to furrow my forehead and use my lips, and from there full recovery in no time!

For now, though, it is enough to know that I have increased my range of facial expressions twofold.  This new one with the single raised eyebrow I shall call happiness.