For those of you who know me and have followed my journey for awhile know my personal struggle with the genetic disease called Neurofibromatosis. To those new to my journey, it is apparent when looking at a photo of me that something is different. This post is about living with Neurofibromatosis type 1 (NF1), and what actually gives me life.
NF1 is a genetic disease that, among other manifestations, causes tumors to grow on the body anywhere there are nerves. Half of all those with NF1 inherited it from a parent, the other half because of a spontaneous mutation of the NF gene. NF1 occurs in 1 in every 3,000 births around the world. There is no cure, although drugs are currently in development that may help slow and/or reduce certain tumor growths.
Hiking on Mt. Emei.
Back in October I noticed a social media post from the Children’s Tumor Foundation (CTF), a non-profit organization aimed at raising funds for research of all NF-related disorders, raising awareness, and patient support. A big gala fundraiser was approaching, and they wanted selfies from the NF community to use during the event.
I had just returned from a fantastic hike on Mt. Emei and emailed my selfie on the mountain, adding that I was in China with the Peace Corps. The PR-manager thought that was great and asked if I would write a personal story for their website. You can read the post here. In fact, when I sat down to write my story, I took inspiration from an original post on this blog, On Disfigurement and Grace.
When I applied to the Peace Corps and accepted the invitation to serve, I knew the medical clearance process was going to be a challenge—as it is for many of us. But I knew I would have the additional challenge of seeing specialists to document the disease and support me that I was healthy enough to serve with these tumors. I’m grateful for supportive specialists and the medical insurance that allowed me access to them.
It is true that every day when I look in the mirror, it’s a challenge to go outside. But as you can read on this blog and elsewhere, I choose to live and do that which gives me life. I’m proud to be serving in the Peace Corps and happy to have traveled all over the world.
When I finally set foot on Indonesian soil again this past August, after nearly three years, I knew I was home again. This post describes my short 10 days in Indonesia during the latter part of August, returning to the North Sumatran province.
My first destination was Bukit Lawang, a mountain village next to the Gunung Leuser National park. Here one can find the Orangutan, or in the Indonesian language Orang Hutan which literally means Person (orang) Forest (hutan). I hired a guide, as one must do in the park, and set off on a day-long hike through the jungle. Though it was not far in distance, I saw Orang Hutan and other wildlife and enjoyed the nature around me.
Orang Hutan in the forest at Bukit Lawang, Indonesia
The peaceful scene in Bukit Lawang
The peaceful scene in Bukit Lawang
Trekking with a guide
Orang Hutan in the forest at Bukit Lawang, Indonesia
Orang Hutan in the forest at Bukit Lawang, Indonesia
Seeing other wildlife
Seeing other wildlife
Ants in the forest
Orang Hutan in the forest at Bukit Lawang, Indonesia
I also spent time in Pematang Siantar and Balige, the two towns in North Sumatra where I taught English from 2012-2014, and spent a few days relaxing at Lake Toba, the world’s largest volcanic lake.
My time was short, but I filled it with many things. I saw old friends and made new friends; I ate my share of the amazing Indonesian and ethnic Batak food I have missed so much; I visited former students, and even popped into visit the English course of one of my former students; and I once again dipped my feet in the waters of Lake Toba.
It was like another homecoming.
Hanging out with a former student
Hanging out with a former student
Good friends and colleagues
friends
With teachers from Memory English Course
Visiting Memory English Course
I used to balk when people asked me about my favorite place I’ve traveled. There are so many amazing places that I didn’t know how to choose one. I have, however, since decided it has to be Indonesia.
My heart still lingers there.
Friday is traditional market day in Balige
Current students of the Deaconess School HKBP
A very important ingredient in Indonesian cooking
Balige, North Sumatra, Indonesia
Balige in the morning
Former student
Scenery in Balige
Current students of the Deaconess Theological School in Balige
Wonderful welcome
The hospital in Balige
Balige, North Sumatra, Indonesia
In front of the market in Balige
Former students
Balige, North Sumatra, Indonesia
Eating some bakso
I miss being surrounded by song
Current students of the Deaconess School HKBP
Deaconess Theological School, Balige
An evening with the students
Deaconess Theological School, Balige
Lake Toba is the site of a supervolcano, and was formed some 70,000 years ago after a eruption so massive, it caused a volcanic winter.
I will always find peace there, and I’m glad I had some time there this past summer.
Aliens. Robots. Environmental destruction. Pollution loving aliens. Secret agents. Witches. Killer friends. Dystopian futures. Birds engulfed in shadow. These are a few topics students at my college wrote about during the creative writing competition last month. I was honored to host Write On!, an international creative writing competition facilitated by Peace Corps Volunteers around the world. Much of the instruction for Chinese college English majors focuses on memorizing long lists of vocabulary and knowledge of grammar to score high on standardized tests, so this offers them an alternative way to use and improve their English skills.
The rules are simple: students are shown two writing prompts (different at each grade level) and given one hour to respond to one of them without the use of any aid such as cell phone or dictionary. Their entries are judged based on creativity and overall structure rather than on grammar and spelling. As a host I chose 10 entries from each grade level (in my case, University freshmen, sophomore, and junior), and those entries were judged at provincial and national level against other students from other Peace Corps sites. Those national winners were then judged at an international level from other Peace Corps sites across the globe.
Over 170 students from my college came and tapped into their creativity. I was thrilled—and a bit overwhelmed—at such a great turnout especially because many were not my students. Even more thrilling, one student was selected as the National and International winner for 3rd year university (junior) level.
The stacks of entries for the writing competition.
I first met Celina when I told her she was the Write On! National Winner for juniors (we hadn’t yet learned the result of the international judging). I only teach speaking and listening for freshmen and sophomores, so it came as a surprise when 31 juniors attended the competition.
We sat down for a chat in the space known as the “Bookend,” an ongoing project started some years ago by a previous Volunteer. The room features stacks of books in English and Chinese, and ranges from fiction and classics to dictionaries and textbooks all available for checkout. The Bookend also functions as a daily English Corner. As I talked with Celina, a group of 20 students were already engrossed in practicing pronunciation through tongue twisters.
With Celina (陈林）, a junior and winner in the Write On competition at the National and International level.
Celina said she hadn’t participated in Write On! last year, but was eager to this year after she heard about it. When she began her study in Mianyang, she wasn’t too interested in English. That changed over time, in part, to having a previous Peace Corps Volunteer as a teacher whom Celina still fondly remembers.
When I asked Celina about the thought process for her essay, she said she had considered a happy ending, but it wouldn’t have been interesting enough. When I read Celina’s essay, I was struck by the unique approach (She chose to write from this prompt: Every morning, a bird lands on your window and pecks at the glass. It is your alarm clock. One morning, it doesn’t appear. Instead, there is a note. What does it say? What happens next?). To me, her story is mysterious and haunting. Part of what drew me in to select her essay for the university 3rd year top 10 was the ending without a clear resolution, marked by two words: “Save me!”
Celina was quite surprised and humbled by the honor to be a national and international winner. Her face lit up with a bright smile as she softly spoke about her experience and future ambition. She told me she is seriously considering earning a graduate degree. She wants to pursue a career translation, and in fact, had perused the Bookend shelves for a translation textbook before our talk.
We parted ways after taking a photo together; she still seemed a little surprised. She wants to participate again next year, and I told her I would be happy to host another competition. Until then, she will be studying and preparing for the TEM-8, another big examination for English majors.
So sometimes life in China as a university English teacher is a bit odd. We have to navigate a different culture, a different university system, and the sometimes awkward use of our own native language. My students seem well aware that spoken English in this country is often not correct, as they make jokes about Chinglish.
As Peace Corps Volunteers we’re prepped in our training about how things go here, culturally. Accept invitations, we’re told; first impressions are important, so make yourself known; and just “go with it.” Thursday evening was one of those time when all three applied.
A few weeks ago students excitedly invited me to a “Dubbing Competition.” Even after asking for clarification, I still didn’t know what that meant other than it had something to do with movies…and dubbing?. But one thing was certain: Myself, my Peace Corps sitemate, and another new foreign teacher were expected to attend and be judges in the competition.
Although I was told in advance, on Wednesday I received a decorated hand-made card–probably made by students on behalf of the Foreign Languages Department–inviting me to a “Dudding Competition.” Just roll with it.
On Thursday afternoon, 6 students were absent from my class, excused because they were preparing for the event. Just roll with it.
On Thursday evening, finally the event. There were about 10 other judges, and we gave scores on each performance. It was only living through the event that I realized they really meant “lip syncing” instead of dubbing. After the group gave a short intro-performance, they lip synced to a short movie clip. The clip was projected onto screens and both the language they were speaking and a Chinese translation was given.
Since this is the Foreign Languages Department, there were performances in English, German, Japanese, and French. Since I can speak German, I was fine with that, but even though I don’t know the others, I was nevertheless judging their pronunciation and performance. Yeah, just roll with it…
The best part of the night was seeing a group of my students perform the scene with the sloths in the DMV from Zootopia. That scene is something we all relate to and find funny. The whole room was laughing. And in that moment, it made all the oddity and dealing with the unexpected worth it.
I remember it well—the day I became a student of Eberhard-Karls Universität in Tübingen, Germany. Paperwork with official stamps finally in hand, I bounced through the cobble-stoned streets of the Altstadt toward the bridge that hangs across the Neckar River. Looking out over the old buildings of this once-walled city neatly reflected in the Neckar’s still water, I savored the day’s accomplishments. It was indeed a fine start to my second week of life in Tübingen, on Tuesday September 11, 2001.
Thirty minutes later at the campus computer lab, my upbeat mood came crashing down when I read with disbelief the headlines about the terrorist attack in my home country. Outside, students carried on with their afternoon, not yet aware that thousands of people had died or been injured when planes crashed into the World Trade Center towers in New York City. None of it seemed real; my heart sank, but I was not hopeless.
The next day, and in weeks following, I unleashed a series of emails detailing my perspective from abroad to a list of family and friends—revealing more than general updates and the life of a university student in Germany I had first intended. The email list began as a method to keep in touch, but evolved into a means to help others see their own country and the world in new ways.
During the year I studied abroad, I traveled within Germany and to 11 other European countries (Austria, Czech Republic, Estonia, Finland, France, Greece, Italy, Luxembourg, Norway, Sweden, and Vatican City), writing home about each adventure. Through my correspondence, my family and friends watched Germans grieve with the US in the weeks following September 11; they joined me for Christmas 2001 in Finland, with a Finnish friend and her family as we broke tradition on Christmas Day and took an overnight boat cruise from Helsinki to Talinn, Estonia; they felt my curiosity as I rid myself of Deutschmarks and held the Euro’s paper currency for the first time on January 1, 2002; and they discovered what German universities have to offer, especially Tübingen’s unique charm and history.
When I arrived in Tübingen in late August 2001, I was no stranger to travel; however, that year embodied more than study or travel, it heralded significant change in my own worldview in addition to those around me. In the years since, I have traveled to many more places, and I intend to continue that way of life wherever I am, inviting others into the journey.
Reflection on the Neckcar river in Tuebingen, Germany.
The above is a slightly edited version of something I wrote in early 2015 just for myself. Later in the year when I applied to the Peace Corps, I used part of it in my application essay. Now I post it to share that next month I will begin my service with the Peace Corps as an English Teacher in China.
More information forthcoming about what I will be doing and where I will be going, including a more formal announcement. Stay tuned…come, follow me on the journey!
Our three-wheeler pulls into the dusty lot used as a bus station. Several mini-buses and big red buses similar to school buses idle around, engines humming and doors open, all waiting to depart to various cities in eastern Sri Lanka. I grab my bags and step onto a patch of caked dirt.
My friend Apriliza emerges from the three-wheeler and stares at me. Two men walk by, discussing something in Tamil as another bus pulls out, kicking up dirt around us. Sri Lanka’s majority population are ethnic Sinhala, but here on the east coast are a pocket of Tamil Sri Lankans.
The Tamil Pastor stands next to me and points to a nearby bus. “This is your bus,” he declares in English.
A few days earlier I had traveled to this city called Kalmunai—a tiny dot on a map with no tourism to offer—by repeatedly mispronouncing its name to random strangers. I was in Kandy, a city in the center of the island, with a bus station many times larger than Kalmunai’s, bustling with buses and thousands of travelers. Not deterred by a few confused looks, I said “Kalmunai?” until a man with red betel nut stains between his teeth spat and pointed toward a mini-bus at the end of a long line of larger red buses.
I stood in the yard in front of the church while the crowd began to gather. For once in my life I felt tall—at 5’2” I’m a short American, but next to the young Indonesian women who surrounded me, I could see the tops of their heads without straining.
We had run across the courtyard from our dormitory when we heard the siren that we were certain was the police escort for the wedding procession. People came from every direction to stand in front of the church and wait. Police lined the red carpet keeping the crowd from mobbing the wedding procession, as news cameras rolled and people snapped photos from their cell phones. Life in Balige, a rural town in Indonesia’s North Sumatra province, rarely reached this level of excitement.
The elderly woman’s body lies inside the house in a coffin covered only by a thin white veil. Aside from the coffin, the room is void of furniture. A dozen members of the family and surrounding village sit cross-legged on the multi-colored plastic woven mat spread across the tile floor. I add my sandals to the pairs already stacked in front of the open door and step inside.
Delviana Naibaho—a co-worker at the Deaconess Theological School where I teach in a town a three-hour drive away on windy pot-hole ridden roads through the Sumatran rainforest—greets me. I call her “Ibu,” a word that means mother, but is also a polite form of address for women akin to “ma’am.”
Today, to show support to Ibu Naibaho, I attend her mother’s wake with a delegation from the school.
“Turut berduka cita, bu,” (my condolences, ma’am), I tell her as we shake hand and sniff cheeks in the Indonesian manner.
Charity abounds in all things, from the depths to high above the highest stars, and is most loving to all things; for to the high king it has given the kiss of peace.
— Hildegard of Bingen, “caritas abundat”
On the vineyard-covered hills above Rüdesheim am Rhein, Germany, sits the Abbey of St. Hildegard of Bingen, where Benedictine nuns with heavenly voices still chant Hildegard’s ancient music. Hildegard of Bingen—writer, composer, and mystic born in 1098—founded the abbey that would eventually become what is now in Eibingen, above Rüdesheim.
Seven times a day the nuns gather to pray, in accordance with Benedictine rule (taken from Psalm 119:164). As Benedictines they also exemplify gracious hospitality, opening their doors to guests of all kinds. For a weekend in late March 2002, I was one of those guests.
It was Palm Sunday weekend, the time when Christians prepare for Easter by first marking Jesus’ entry in Jerusalem before his crucifixion death. The worship included a procession outside the chapel with palms and incense.
“In my country there will be an election,” declared Oskar my taxi driver, as he drove me through the center of Colombo.
An hour earlier, my flight had landed at Bandaranaike International Airport, 35km north of Colombo, Sri Lanka’s largest city and capital. It was Sunday, January 4, 2015, four days ahead of the awaited election.
In October 2014, then Sri Lankan President Mahinda Rajapaksa called for elections to be held in January 2015—two years before they were due. A month later, Maithripala Sirisena, a former ally to Mr. Rajapaksa, announced his candidacy under the opposition coalition. In his re-election bid, incumbent President Rajapaksa told voters to “go with the devil you know,” contrasting his longevity as a two-term president and the relatively unknown career of Mr. Sirisena.
Under Rajapaksa, the military had defeated the rebel separatist Tamil Tigers in 2009, which gave him support from the nation’s Sinhala majority. His critics, however, allege human rights violations during the 26-year civil war. Both sides have been accused of violating human rights, although the government under Rajapaksa hadn’t acknowledged any abuses.
In the taxi, Oskar had begun with polite conversation at the airport—the usual where are you from, where are you going in Sri Lanka, how long will you stay—but his swift switch into politics surprised me.
“Who will you vote for?” I asked Oskar, curious, and hoping I wasn’t intruding.
“Maithri,” he said, not shy about his support for opposition candidate Maithripala Sirisena. “It’s time for change in this country,” he added.
