Lia Lee’s Story

There’s a riveting book I just read called The Spirit Catches You and You Fall Down that documents the story of a girl named Lia Lee.

Lia comes from a Hmong family that settled in California after immigrating to the US. At a young age she starts having seizures. Her parents take her into the emergency room, but because she is not having a seizure during the visit and her parents don’t have the English to explain what happened, it takes several visits before she is diagnosed with epilepsy. But even before she is diagnosed by the doctors, the Lees recognize the seizures as the condition where “a spirit catches you and makes you fall down.” In Hmong culture, it’s seen as a source of pride, and those who have epilepsy often grow up to be shamans.

The doctors who care for Lia aim for an agressive course of medicine, but there are issues that make it hard for Lia to get the doses the doctors prescribe. For one, the Lees don’t speak English, are illiterate, and there aren’t always Hmong-English translators on hand at the hospital. So the doctors have trouble communicating the complicated regimen of medicine that Lia needs to take. In addition, the Lees are wary of doctors and believe that the medicine they are prescribing might be making her sicker.

Despite everyone’s attempts to treat and care for Lia, she doesn’t fare well. Eventually Lia has a severe seizure that lasts for two hours. The doctors at her local hospital can’t stop it, and it she is transferred to another hospital with more advanced pediatric care. There, she goes into a coma and is unable to breath or eat on her own. Her doctors think that she will die and allow her parents to take her home. Amazingly, she lives, albeit with severe brain damage.  It turns out that this last seizure wasn’t caused by her epilepsy but by her body going into septic shock after contracting a serious infection. One of the doctors at the pediatric unit she is transferred to suggests that her immune system may have been weakened by the seizure medicine she was taking, which could have led to the infection. So in some ways, the Lee family may have been right, that the medicine was making Lia sicker.

As the story unfolds, the most glaring barriers that both the Lees and the doctors face are linguistic and cultural ones. One of the doctors, Neil, describes it like this,

It felt as if there were this layer of Saran Wrap or something between us, and they were on one side of it and we were on the other side of it. And we were reaching and reaching and we could kind of get into their area, but we couldn’t touch them (91)

Some of my Bhutanese Nepali friends from class

That image felt so real to me and reminded me of the refugee population that I know more about, the Bhutanese Refugees in Philadelphia. In college, I taught English as a Second Language in South Philadelphia and met many Nepali-speaking Bhutanese families who would come into class.

One of the most difficult things that accompanies moving to a new country is overcoming those cultural and linguistic barriers. With that comes trying to figure out the way that things work and learning how to navigate the bureaucratic systems. I remember one time an adult student came into class very upset. She was yelling and almost on the brink of tears. She was speaking in Nepali very quickly, so I had a lot of trouble understanding what she was saying, but I told her that I would help her out after class was over.

After class, I was beginning to get bits and pieces of her story, but I was still having trouble figuring out what was wrong. She invited me over to her apartment to talk to her husband who was able to speak some English. After talking with her husband, I finally understood they were talking about their water bill. They had recently moved to a new apartment but were being charged for both the water bill from the old apartment and for the water bill from the new one. This had been going on for several months.

It took me four separate calls to different departments in the water company to finally find a live person to talk to who was able to transfer me to somebody who could help with the problem. I told the representative what the issue was, and she promised to right the problem immediately. I felt so much for my friend and student who was overwhelmed by the bureaucratic mess. For heaven’s sake, bureaucracy is hard to deal with if you’re a native and speak the country’s language. Imagine trying to call up this organization without knowing how to navigate the system or having the needed language skills.

Although the story of Lia is a sad one, I smiled a lot while reading the book and loved all of the bits of information and anecdotes that Anne Fadiman collected. I learned so much about the Hmong that I never knew. Here’s one of my favorite tidbits from the book,

The Hmong have a phrase…which means ‘to speak of all kinds of things.’ It is often used at the beginning of an oral narrative as a way of reminding the listeners that the world is full of things that may not seem to be connected but actually are; that no event occurs in isolation; that you can miss a lot by sticking to the point (54)

It just loved this 🙂 There’s a lot about American culture that I like, but its obsession with “getting to the point” is not always one of them. In school we’re taught to stick to the point, write concisely, leave out unnecessary details. Which is important sometimes! But maybe there’s a place of balance that would allow for more exploration and wandering off the path.

I loved The Spirit Catches You and You Fall Down. It’s a captivating read that I’d recommend to everyone, especially those who work or interact with people from cultural or linguistic backgrounds different from their own.

Under My Skin

The sublet we’re living in right now is mostly empty. We’ve got a bed and some side tables, but the girl living here before us took the dining table and couch with her, so we’ve been on the lookout for new furniture. The other night while we were walking around the city we happened upon a sturdy looking coffee table that someone had thrown, legs up, into a dumpster. We quickly checked it over for any damage or stains to see why someone might have thrown it away, but we couldn’t find anything, so we hauled it back to our apartment.

When I told my brother about our find on the phone, he warned me in a grave tone, “Zoe, you’d better be careful. Your neighborhood is notorious for bedbugs.” Oh dear.

I checked over the coffee table carefully once more, but I couldn’t find anything, and we haven’t had any bites yet. Fingers crossed. Anyway, I think bed bugs are more common in things made with cloth, like matreses and couches, so we’re probably safe for now.

Although we haven’t had seen any bed bugs yet, all this talk of bugs reminded me of my run-in with them while I was studying abroad…

About two weeks into my homestay in Nepal, I started to get an itchy rash on my upper chest and back. I thought it was an allergic rash of some sort, so I popped a few allergy pills and tried to ignore it. A few days later, my host mom started to notice it too. She told me it was probably a heat rash and doused me in prickly heat powder. But as the clouds of powder settled, and my itchy skin just kept itching, it started to dawn on me that something else was going on.

After class that day, I was talking with some other students and the program director about  rashes and I showed them my own, which had, by then, spread to my arms and hands. She looked in between my fingers, where the bumps had settled as well and said, “I think you’ve got scabies.”

When I first heard the term, I didn’t actually know what they were, but it certainly sounded sinister, like some awful hybrid of scabs and rabies. After she told me that, I was starting to freak out a bit, but I was still holding out hope that somehow it wasn’t what it looked like.

There was an intern at the study abroad program who agreed to go with me to the doctor to have my rash looked at. While we were waiting to see the dermatologist, she did an amazing job of distracting me from my building anxiety. We talked about college, the US, her plans to study there. Finally, the doctor called me over to his desk, got out his magnifying glass, merely glanced at my rash and said, “Yep, that’s scabies alright.” Cue the tears. I was already experiencing loads of culture shock and language overload and on top of that, I had to get scabies. “Don’t worry,” he said. “You just need to put lotion on it and it should go away in no time.”

“Okay,” I thought, “I can do this.” I went to the pharmacy, got some medicine, and then the intern and I left to go home on the bus. She got off at her stop, and I kept going until I got to mine.

When I got into my room, and looked more closely at the medicine, I quickly realized that my idea of what he meant by lotion was far different from what came in the little bottle. I had imagined some kind of flowery-smelling spot treatment that I would apply in dabs. In actuality it was a chemical-infused pink goop that I had to smear thoroughly on my skin from neck to toe. So much for clean PJ’s and sheets.

The next day I skipped class to pour boiling water on my clothing, to ensure that all of the mites were killed. I remember hauling piles of my clothing down onto my host family’s front yard while curious neighbors stared unabashedly, probably mystified by my behavior.

Later that week, we left for one of our study trips to Chitwan and Pokhara. I took only what I needed and quarantined the rest of my clothing in my room. I locked the door to make sure no one would come in contact with the infested clothing and hoped that the mites left over would die while we were gone (which they did). I had to use the boiling water trick a few more times on the clothing I brought with me, but slowly the itching and red bumps subsided.

Getting scabies was definitely one of my low points while studying abroad, but I got over it. Besides, it really does make me appreciate the fact that at least, for now, there aren’t any mites burrowing under my skin or bugs crawling in my bed.

Organ Donors, Actors, and Eye Surgeons

Before I got my license as a teenager, I decided to mark that I wanted to be an organ donor. My parents encouraged me to, and I have no religious or other objections that would prevent me from being one. Although it’s painful to consider the possibility that I might die, I know rationally that putting that little mark on my license could make a big difference in someone else’s life.

Candles and incense were lit to remember the dead

Organ donation is widely promoted in the US, but it’s still rare in Nepal. However, after Mamu died, Buwa donated her eyes to the Tilganga Eye Centre. On Saturday, there was a ceremony to honor people who have given their eyes after death, and since Mamu donated her eyes, we went to attend the event. There were quite a few people in the crowd, which is a fantastic sign. To get that many people interested in and supporting organ donation is a great thing. Outside of the hospital, they built a display with flowers that listed all of the deceased donors’ names, and as part of the ceremony, family members of the dead lit incense and candles around the display. Some families got to meet the recipients of their love ones’ eyes: we didn’t, however, because the children who received Mamu’s eyes are very young, but the doctor who operated on these kids told us that he’ll introduce us to them in a few years.

Joel is the guy on the right

Tilganga Eye Centre is a really incredible place that works to treat patients from all walks of life. One of the people who drives the work there is a man named Doctor Sanduk Ruit. He’s a fantastic eye surgeon who has traveled all around Nepal to perform cataract surgery on people living in rural areas. He’s also done a great job of increasing publicity for the hospital. One way he’s successfully brought attention to the centre is by making connections with well-known people who become brand ambassadors for Tilganga. Recently he made a connection with the actor Joel Edgerton who was able to make it to Nepal and come to the event on Saturday. Joel’s most recent film is called Warrior, which Tri and I saw a few weeks ago. I can’t watch fight films to easily (I cringe when somebody gets hurt), so I was in and out of the room while Tri was watching, but Tri sat through it from start to finish and really enjoyed it.

Here‘s and article about his trip to Nepal and Tilganga. He’s a super easy going, down to earth kind of guy, and I’m really excited for Tilganga because I think his support will help them increase other support to the hospital from abroad.

Besides attrracting actors, Tilganga also attracts world-class doctors, often those who want to make a difference in the lives of Nepali people or who want to give back somehow. One such doctor is a well-known lasik eye surgeon based in both the US and the UK.

I first got glasses in the third grade and then switched over to contacts in seventh, but I’ve never felt comfortable with either of my two options. Glasses feel heavy on my face, and contacts are unwearable past 8 or 9pm for me. I’ve wanted to have lasik eye surgery done, but I my eyes may continue to change in my twenties, so I’m wary of doing the procedure right now. However, Buwa thinks that if I do decide to have the surgery done, I might be able to get it done with this doctor.

Lasik Surgery Equipment

Besides having a fantastic doctor, Tilganga also has great equipment made by the German company Zeiss. If I have eye surgery done in the US, I’d probably have it performed at an average place with an average doctor for a couple thousand dollars to do one eye. For both eyes, the price could rise above $4000 dollars, but if I do it here, I might be able to get it done by this great surgeon with great equipment for a few hundred dollars. I’m finding this idea hard to resist. My mom is pretty against me doing it Nepal, but maybe I can convince her that it will be okay. There’s lots of time for me to decide anyway, so I’ll do some research and keep thinking about it.

Understanding Grief

Yesterday morning, I woke up and went downstairs to have breakfast while Tri stayed in our room to check his email. When I got back upstairs, he called me over to the computer and showed me an email from my mom saying that my grandmother died early Friday morning.

My maternal grandmother had been sick for about 3 years. She was diagnosed with cancer back when I was a Sophomore in college, and she’s been battling it ever since. At certain points, she seemed like she had really gotten rid of it, but there have been many times when we thought she would die.

Before Tri and I left for Nepal last summer, we stayed with the rest of my family at a beach house in North Carolina, something we’ve done every year for a long time. Before we moved to Nepal, I knew that my grandmother was likely to die this year, so I tried my hardest to say my goodbyes and spend time with her during that week.

Despite having tried to prepare myself for her death, I was shocked and saddened into tears when I read that email from my mom yesterday.

This is the third death this year of someone close to us. The first, as I’ve mentioned before on this blog, was Tri’s mom’s death. She passed away suddenly last April. The second death was also sudden, the death of a friend of Tri’s from his school days (I’ll call him A).

Last spring, right after Tri and I got the horrible call that his mom was in the hospital, Tri booked his flight to Nepal. He left that evening. His mom had been put on a ventilator, to keep her heart beating so that Tri could see her one last time. Once she was officially dead, he, his dad, and his brother went into the 13 day mourning period required for Nepali Hindus.

For the first few days, I had no way to contact him because he wasn’t allowed to use his computer, but then I was able to talk with him on gchat during parts of the day. About a week and a half after his mom died, while we were on gchat, Tri told me that the remains of A’s body had been found in India along the side of a cliff. This friend had gone to visit another of their friends in India, and at one point, he went hiking on his own. When he didn’t return, his family called the police. A’s family went down to India to help look for A, hoping that he had just gone off with another friend and had failed to contact them. After looking for about 10 days, they found the remains. Apparently A had been hiking and, as far as they could tell, just slipped and fell.

These three different deaths were each been different and hearbreaking in their own way. Tri’s mom’s death was sudden. It made me sick to my stomach, completely knocked the wind out of me. Although she had been sick for many years, we never expected her to die so suddenly and so soon. She was only 47.

A’s death was quite different. It was sudden, like Mamu’s, but more tragic in a way. When Tri told me about his friend’s death, I burst into tears. Some of the tears, I’m sure, were renewed grief for Mamu and some of them for A and for the way that he died. He was so young, only 25 and perfectly healthy. A’s death helped me put Mamu’s death into perspective. Although she was young too, she lived a full life, had an incredibly loving husband, and raised two sons to adulthood. A had barely made it to adulthood.

Now, as I start mourning for my grandmother, although I am sad, I don’t feel as bad as I might. Partly because I knew her death was coming, but also because Mamu and A’s death have put my grandmother’s death into perspective. It’s still really painful. I can’t go home and mourn with my family, and I can’t support my mom, aunts and grandfather as they mourn the loss of their mother and wife. But I know that my grandmother lived a long, full life and had a large supportive family that really loved and still loves her.

Living in Nepal has also given me some perspective on death. People die here all the time and very suddenly. Just last night I heard of a bus that crashed in far Western Nepal, killing at least 16 people. At least once a month, I hear about someone being hit and killed by a motorcycle, car, or bus. We hear about incidents like that all the time, plane crashes, bus accidents. People here also die of dysentery and other, often treatable diseases, that don’t kill in the West. Of course people die in the US too, but I think their deaths are often less sudden or maybe less tragic; there seem to be fewer death caused by accident and fewer early deaths from disease. Being around all this death in Nepal hasn’t helped me to understand the phenomenon any better but has helped me to accept death as a fact of life.

A few weeks ago, I tried to start reading a book called The Year of Magical Thinking, written by Joan Didion, a woman whose husband died suddenly while her daughter was sick in the hospital. Her daughter then died a year later. The book was way too sad for me to continue, so I put it down after a few pages. But one thing I got out of the part I did read was that grief comes in waves.

And this really rang true to me. As I’ve been grieving for Tri’s mom these past 8 months, I’ll have a span of days where I won’t think about her death at all. Everything will seem normal and okay, but then I’ll miss her suddenly, all at once. These times of intense grief come when I see her picture or cook Nepali chiya (tea), something she taught me how to do, or when I see Tri’s dad looking teary-eyed and know that he’s thinking about her. But these waves of grief have lessened in frequency and intensity with time.

I’m still waiting for a greater understanding of death grief to come. People say that when faced with diffficult situations, you’re supposed to gain wisdom and understanding, but somehow I just feel like a deer caught in the headlights, still in shock and unbelieving of what’s happened.

The Case of the Aching Toes

It all started the weekend before last. I went to get some socks out of our sock drawer but jerked the drawer out a little too quickly. Before I could pull my foot out of the way, the drawer nicked my right foot’s ring toe. The moment of contact was incredibly painful, but I chalked it up to my foot being cold (which usually seems to make things more painful).

I thought that everything would be fine soon enough, but then I went to the gym for a bit later that day, after running on the treadmill for a while, the toe started to really hurt. By the next morning, it was red and swollen. I thought that the swelling would go away, but it has stayed about the same size and same hue of dull red for the last week or so.

The same day that I hit my toe, the toes on that foot started to ache. I figured that the pain was just radiating out of that hurt toe into the other ones. But then the toes on my left foot started hurting as well. They were fine as long as I didn’t move them, but when I curled them, they would start to ache all at once. They also felt kind of puffy and swollen and were itching like crazy.

My ring toe has refused to get better, and I started to assume that it was either sprained or broken, but since I didn’t think that there was such as a toe caste, so for the last week, I’ve been ignoring it.

With my other toes, I started to figured that my shoes were causing problems. For my job, I’m up and about a lot during the day (I’m a teacher–posts to come on teaching in Nepal and the educational system here), so I thought that walking around a lot could be aggravating my toes, especially if I was wearing poorly designed shoes. I switched from my flats to very comfortable sneakers. However, by the end of the day today, my toes were hurting more than ever.

Right when I got home today, I called my mom. She’s never had any medical training, but she knows a lot about health, disease, and the body. When I told her about my toe troubles, the first thing she thought of was Gout. People with Gout don’t process uric acid properly, and it builds up in their joints, which causes pain and inflammation. I started looking up the disease, which apparently frequently manifests in the toes, but I was still skeptical. I’m kind of young to be having symptoms of Gout, and I don’t drink much alcohol or eat much red meat, two types of food that increase your risk of having Gout

Then my mom remembered another condition having to do with swollen, painful digits, called Chilblains. I’ve been experiencing inflammation, itching, and a little bit of redness, three out of the four main symptoms wikipedia lists.

Then I read that Chilblains “can be manifestations of serious medical conditions…[like] connective tissue disease.” My first reaction was “whaaaa!?!?!”

But then I thought about it more. Even if this is what I have (and who really knows), it’s so unlikely that I have a connective tissue disease! Even if I do, there’s nothing I can do about it right now, so I’m just going to ignore that last part.

I’m very lazy about wearing socks and slippers in the house. When I told my brother-in-law that my feet were aching, possibly from the cold. He was like “Duhhhh. I saw you walking around on the freezing marble floors with bare feet yesterday. Of course you’re going to get problems like that.” He’s right. I should have known better.

Tonight, Tri starting enforcing a strict rule of socks-at-all-times, and after wearing a double layer tonight, my toes already feel less achy. So I’m hoping that this is the problem and that I can fix it by being a little more thoughtful about my footwear. I also bandaged up and taped together my ring toe and the one next to it, so hopefully that will heal quickly too.

Has this happened to anyone before? Has anyone ever heard of this happening in Nepal? Is there a Nepali name for it?