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.

Return to Peru.

When I first created this blog five years ago, it was intended to chronicle the experiences of my first return trip to Peru, and the title reflected that theme.  But since the sudden return home from my fifth stay and diagnosis a little over three weeks ago of Guillian-Barré Syndrome, a rare and temporary autoimmune disorder, that simple title has taken on a different meaning.

Now it is a command, a mantra, a source of motivation when I most want to escape from the hospital or struggle to raise my foot or can't even look at another calorie-dense Ensure.  Have patience.  Get strong.  Return to Peru.

Good neighbors

Went to pay our rent to Señora Nelly, the dear Peruvian abuelita who lives downstairs, and returned with a potted plant for our courtyard, two tiny rocoto peppers from her garden, an apple and a grenadía she took from a basket in her kitchen.  These are days when Peru feels like home.

Madrigal: Candelaria

Once we got settled in at Paula's cousin's house, we followed the sound of live music to the home where most of the town was gathered. As with all festivals in Colca Canyon, Candelaria in Madrigal is steeped in local music and dance, and that's what started the festivities Thursday evening.

The wititi, pictured above, is a traditional dance representing the courtship of a young woman by a young man from a rival community (think West Side Story), danced to music played on drums and brass by local musicians. According to tradition, a young man would disguise himself in women's clothing with the tasseled hat shown above and take advantage of local festivals to dance unsuspected with his love and eventually woo her.  

(For the record, our own Ñaña Frida is a fantastic wititi dancer and could take on anyone in this crowd.)

Dancing continued long after the rain began, and we could still hear the band playing late into the night as people paraded from house to house around the town.

The next morning, the band played on and the townspeople, dressed in their typical clothing, danced behind them as they progressed around the town square. 

The patrons of this year's party:

The fusion of Spanish Catholic traditions with local customs is present throughout Peruvian culture, and this celebration is no exception.  Named for the Virgin Mary of Candelaria whose origins can be traced back to the Canary Islands, this festival seamlessly mixes the centuries-old local dances, dress, and music of Colca with the veneration of Mary through Masses and elaborate altars like the one Domi, Victoria and Frida pose in front in the photo below.

Just looking at this photo you can see how nationalism and a globalized economy (i.e., stuffed animals holding hearts with English messages hanging among the silver platters) are also added into this complex blend of influences to create new and constantly evolving customs.

Madrigal: Crossing the Canyon

The trip the picarones were going to pay for was to the village of Madrigal, located on the other side of Colca Canyon between Huambo and Chivay.  Paula, my comadre, is from Madrigal and wanted to return home to celebrate the festival of the Virgin of Candelaria on the 26th and 27th.  (The festival is usually celebrated on February 2nd, but Madrigal, a town known for its musical talent, celebrates the week before so the musicians can play at bigger cities' celebrations the following week.)

Paula and the rest of the knitters who were coming along decided we'd meet at the bus terminal at 6:00 Thursday morning, but -- no surprise -- they hadn't actually checked the bus schedule to find out that the bus leaves at 5:30, and then didn't arrive until 6:30.  Once they confirmed that there were no more buses to Madrigal that day, they managed to find a private van driven by our new best friend Leo, who was accompanied by his two teenagers.  Everyone piled into the van, the ladies donned their Colca hats, and we were off.

 

First stop: breakfast.  While Leo took his time sitting down to dine at the Arequipeñan equivalent of a truck stop diner, we wandered off in search of the kiwi-like fruit of the sancallo cactus plant.  Kati, Victoria's daughter, poses above next to the spiky giant.  Below, Sebastiana uses a stick to carefully scrape the spines off the peel of the fruit.

 

The cactus also boasts these gorgeous white flowers:

Once everyone was back on the bus we headed on towards Chivay to stop at the thermal baths.  After last year's episode I decided to sit this one out, but I did get close enough to take the photo below of the stand where Lexi and I had bought our one-size-fits-all swimsuits.

After the baths, we wandered into town to eat lunch and take some photos next to the famous wititi statues.  

At this point we'd already managed to convince our driver to stick around several hours longer than he'd initially planned, and by the time we finished lunch the ladies had cajoled him into taking us the rest of the way to Madrigal as well.  

Feeling quite lucky, we made our way over the river from Chivay to the other side of the canyon.  The bridge above was Incan or pre-Incan, depending on who you asked, and I was happy to admire it from a distance as we crossed on a more modern version.

¿Picarones? Yes, please.

Wednesday afternoon was supposed to be our last weekly meeting in the workshop before Lexi arrives on the 31st, but the Ñañas had other ideas of how to spend the day and we ended up instead at Paula's house making picarones, Peru's special version of fried dough goodness served with chancaca (sugar cane syrup).  The plan, I'd been told, was to sell them on the street to raise money for our trip to Madrigal in Colca Canyon.  

As it turned out, though, there weren't any left over by the time we finished eating our fill, and all of the money that was raised came from the Ñañas themselves.  Successful fundraiser?  Maybe not, but everyone seemed pleased with the results as they licked the sugary syrup off their fingers.

Below: The dough had already been mixed and kneaded ahead of time, so as soon as we got the fire built and the oil bubbling Andrea got to work pulling the dough into doughnut-shaped rings.

After watching a few times, I gave it a try myself.  Results were mixed.

Below: Victoria and Maria keep an eye on the frying pan, while Uldárica and Andrea work the dough...

... and Margarita lines up fresh picarones on a stick.

The panel of judges -- Domitila, Juana and Damiana.

Finally, for your viewing pleasure a clip from the brilliant ad campaign done last year by Peru's tourism board which featured teams of Peruvian celebrities descending on towns around the world with Peruvian names to tell the locals their rights as Peruvians.  Here, a Peruvian comedian offers to trade a police officer in Peru, Nebraska, his run-of-the-mill cake doughnuts for picarones.

Techamiento

I've been struggling quite a bit to find my footing these first weeks back in Arequipa, letting myself become easily frustrated by obstacles and cultural differences and often asking myself what I'm doing here in a country that will never fully make sense to me and where I will always be something of an outsider.  Today, though, was a good reminder of the elements that keep pulling me back.

When I arrived at the beginning of this month, I found out from Andrea that she had managed to save enough money through her own hard work and with help from her sons, Elvis and Wilbur (pictured above with their mom), to construct a new addition to their house.  One never knows how long such projects will take, but this Friday she informed me that construction was miraculously almost finished and Saturday would be the big day when the roof would go on and the roofing party, or techamiento, would take place.  She asked if I could come, and I told her I wouldn't miss it.

I, however, failed to understand that this invitation was Andrea asking me to be the madrina, or sponsor, of the roof and that I should therefore come equipped with a large floral cross, champagne, candies and a speech.  Luckily, Andrea realized this in time to cover all the bases and get everything together at the last minute, but it was a little discouraging to find myself still so inept at picking up on cultural clues and unable to fulfill the responsibilities that go with this kind of honor.


Once everything was ready, Andrea, Frida and I stood on wooden planks in the middle of the wet cement and, with some guidance from Frida on proper techamiento etiquette, I gave the short madrina speech thanking everyone for coming, congratulating Andrea, giving thanks that the heavy fog hadn't turned to rain and asking for blessings on the house and its occupants.

Then, according to custom, we took a hammer to the bottle of champagne and christened the house in the name of the Virgen de Candelaria, a popular manifestation of the Virgin Mary that Andrea had chosen in honor of the upcoming festival (still a hard choice, as there are an absolutely astounding number of Virgin Mary's to choose from).

We divvied up a second bottle into plastic cups, the three of us pouring a brindis, or offering, on the roof of the house so that blessings and prosperity would come to its inhabitants then toasting everyone who had come.  

Finally, firecrackers went off and candy rained down on the friends and family of Andrea who were cheering below.

Beer (Arequipeña, of course) and pisco were brought out, music was turned on, and the party began.

Later, while we passed the communal glass and bottles of Arequipeña from person to person, Andrea recounted her slow but steady progress from sleeping, cooking, working and eating with her two sons in the tiny room that is now her kitchen, to secretly setting a few coins aside each month  until she was able to buy up enough metal rods and bricks to construct two more rooms, and finally to this day, her two sons now grown, when the three of them were able to construct a space that might one day house her dream: her own knitting workshop.

"When people say they can't do it, that they just can't make it through, I tell them that anything can be done.  I look at my two hands and my two feet and I give thanks, because with hard work anything is possible."

Ready for another week.

Christmas, New Years and Homecoming in the Workshop

By the time I arrived at the airport Thursday it was mid-day and the rains had already begun. The ladies were worried about their houses and transportation, and I hadn't slept in a good while, so we decided to postpone our first meeting to Friday.

The first thing that greeted me as I walked through the door to the workshop the next day were shrieks accompanied by handfuls of yellow confetti, which the ladies had saved from their New Years celebrations so we could continue the festivities together when I arrived.

Once I'd made it through a long line of kisses and bear hugs (you start to fear for your life with some of these women -- they are strong ladies), Andrea and Frida served up hot chocolate with cinnamon and anis and panetón, Peru's much nicer version of fruit cake.  The confetti, they told me, was to bring in our New Year, and they'd saved the food to celebrate Christmas together as Ñañas.

Although it's begun to change in recent years, in most Latin American countries Christmas gifts aren't exchanged until the Epiphany, or La Bajada de los Magos, which marks the official end of Christmas.  Below: Our three kings, Rosita (Amelia's daughter), Salma (Victoria's granddaughter), and Mileidy (Marleni's youngest) pose in front of the knitted Nativity scene the ladies made last year.

 Once our Christmas fare was finished, the music was turned on, and the dancing began.  Officially home with the Ñañas.

En Route

3:45 AM: And here we are again, another all-nighter at the Lima airport.  Exhausted and smelly after three flights and the predictably long wait at customs (not to mention some exciting early morning post-caucus traffic at the DMI airport), I am back in Peru, the land of the Ñañas.  The six months home in Iowa flew by, and now all that stands between me and my dear Ñañas is the 6:45 AM flight from Lima to Arequipa.  Almost there...

[Sleep-deprived and sipping some ridiculously overpriced Starbucks tea, the price one must pay for an internet connection here.]

A very broad summary of the months lapsed since the last post: After departing Peru in mid-July, I spent almost six months home with friends and family and the beautiful concept of regular business hours.  Chiri-wise, the months were eventful and generally quite positive ones, if sometimes a bit overwhelming.

A few highlights: The sweaters and accessories we thought would never leave the workshop made their way box by box from Arequipa to our doorsteps in Des Moines -- occasionally detouring through customs in Miami --where tags were lovingly and laboriously attached by my dear mother (need a blanket stitch?  She's your gal.).  Lexi and I made seemingly unending pilgrimages to Joann's and Hancock franchises throughout the Midwest, armed with notions coupons to buy the precious buttons and snaps that we kept buying out in Des Moines.

Meanwhile, somewhere in Portland a magic elf designer named Jamie Letourneau was hard at work creating the Chiri logo, selecting a font and then making rubber stamps of our logo and hand-dying and stamping each hang tag that accompanied all 300+ garments.  (Yes, we are forever indebted to her.)  The ladies kept up their work in Peru with almost, almost, no glitches; our website went up; I took three two-hour classes on small business accounting followed by a crash course in Quickbooks with Lexi's Aunt Kitty and somehow seemed to make it through our meeting with our accountant; Lexi meticulously packed up and shipped out multiple orders to ten stores around the Midwest, including the Des Moines Art Center Gift Shop and Back Country Outfitters in Des Moines; we paid visits to three of the Twin Cities stores selling the Chiri line and found our clients to be generally thrilled with the product; and somewhere in the midst of all this, plans got under way for round two.

So here we are.  It's now 2012, and a new season has begun.  It was an incredible first year with the Chiri project, and we're ready for more.  But before we throw ourselves into the next round, I want to thank everyone for all of your support.  Whether it was sending positive thoughts our way, giving us tips on potential stores where we could sell the line, sewing on labels or watching for the UPS van and calling to let us know a travel-worn box had arrived, your contributions have made this possible.  Gracias y feliz año nuevo!

[As it turned out, I made it through another night at the airport, but the plane to Arequipa that took off Thursday morning was forced to return to Lima after Arequipa's haze didn't let up for us to land, so we were switched to another plane in Lima and lucky enough to make it through on the second try, arriving around 1:30.  A long 30 hours.]