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.