Saturday, June 27, 2015

Playing Tourist in Myanmar

Our trip to Myanmar was a much needed vacation. Although it started out incredibly scary at Yangon Airport, I was able to avoid a full adrenal crisis through additional HC, gatorade, and rest. I was still able to deliver my message to a small village and I still had a few spoons left to tour the capital city the following days.

Downtown Yangong. The Chinthe is guarding the public square.
The day after my speech, my friend dropped us off at a local park in the middle of downtown while she took care of some errands. It was a fascinating experience once we lost our local tour guide. Many locals began to approach us to try to speak to the three Americans that appeared to be so drastically out of place. But they were all so kind and welcoming. While waiting, her husband had the idea to hunt for tea or coffee, but he wanted to find a traditional place. This wasn't your typical Starbucks.

They were so excited to serve us tea.
By the time our tea time was over, my friend had finished her errands. We headed off to Utopia Tower and the nearby park. This gave us a beautiful view of the city. It also allowed us to take some fun photos.

Our group.
One of the best things about Myanmar was the food. I absolutely loved the availability of fresh fruit juice. We could go to a restaurant, point to a fruit, and they would make the juice. We didn't have to worry about high fructose corn syrup. There was no fear of Red Dye #40 or Blue Dye #1. The fruit juice was real, unaltered, and amazing.

At a restaurant waiting on our juice.
My friend's grandmother also graciously welcomed us into her home with a traditional feast. The minute I walked in, I smiled. It reminded me of how my grandparent's house is constantly filled with good food and fun company.

So much food!
And it was all amazing.
Who needs overly processed cakes and cookies for dessert when you have access to such fresh fruit?!
Family photo.
Such a gracious host.
We also visited the Shwedagon Pagoda. By going at night, we avoided all crowds. And we only slightly got scolded for some of the photos we took. Apparently, we are not supposed to imitate the statues. It is considered disrespectful. My bad, y'all.

The girls.
The Husband and I.
Myanmar ended up being one of my favorite countries I visited during my six months abroad.

I left Myanmar refreshed.

Saturday, June 13, 2015

The Flight to Yangon

I almost canceled my speech to a village in Myanmar.

The day before we were set to depart for Yangon, the husband inappropriately started an argument with a Malaysian rental car company in the lobby of our hotel. He had the Malaysian cops called on him due to his erratic and potentially violent behavior. I had to deescalate the entire situation, between the rental car company, the cops, the hotel management, and the husband. That confrontation cost me quite a few spoons.

The next morning, both the husband and I woke early to finish packing and flag a teksi to the airport with our friends. The husband caused another confrontation that included yelling at the teksi driver and calling the hotel management. He eventually "settled" the bill by throwing money in the driver's face while storming off. That adrenaline rush cost more spoons.

Thankfully, we made it through security and customs without issue. Though before we could get through security, the husband had a complete breakdown similar to a toddler throwing a tantrum. Eventually, I managed to coach him through security. We then found ourselves stuck in the smaller international terminal at KLIA because Yangon was considered a short international flight. This terminal had only two restaurants and offered absolutely no gluten free entrees.

Our flight to Yangon started out fine. The husband decided to swap his seat with my friend so that he could sit at the exit row and have more leg space. Towards the end, I warned my sweet friend that I was not feeling well. I would have little if no strength for any activities that night. She stated that was not a problem. We would have transportation waiting for us at the airport that could take me immediately to our hotel where I could rest. I cannot express how thankful I am for friends that understand how my disease can flare up and they do not hold it against me when I must suddenly change plans.

By the time the plane had landed, I could barely walk and my situation was continuing to rapidly deteriorate. My dizziness was steadily increasing and I was having a hard time seeing. I increased my HC, but it did not make much of a difference. I was already too far behind on my cortisol need.

I had to use the restroom, but there was such a long line. I did not have the strength to wait in the line so it was suggested that I use the "invalid washroom." I'm not quite sure why they felt the need to label everything in that restroom with signs. I used the "invalid toilet" and washed my hands at the "invalid sink" only to dry them with the "invalid dryer." By the time I was finished, I barely had the strength to stand. I left the "invalid washroom" and became utterly distraught at the long line through customs. I collapsed on the floor by my husband.

We were greeted by my friend's coworker. Because of his position at the airport, he had an all access pass that allowed him to pass back and forth freely through customs. This ended up being a huge blessing. His face changed from one of excitement and joy at finding us to one of utmost urgency when he saw my weakened body and listened to the explanation of my disease. I took more HC and a zofran. I just wanted to "sleep it off" but that would be dangerous. My friend's coworker decided that the best course of action would be to get me through the diplomat line so that I could rest as soon as possible.

I was a Diplomat in Myanmar!
I was a diplomat in Myanmar. I did not have the strength to stand on my own, so I was held up by the coworker as he explained my situation and acted as our translator through customs. We cut all lines and were escorted past the taxi touts and into my friend's family van. The van was filled with her large family excited to meet us, yet they soon discovered that this would not be the joyous greeting they imagined. By this point, the zofran was kicking in and I was barely coherent. I attempted to drift off into sleep. I did not know what was going on around me, but I trusted that I would be safe.

When we reached the hotel, I still was in terrible shape. We were not even checked in before the concierge and my friend's sister-in-law escorted me up to our room with my luggage. I was still too weak to stand, so I rested all of my weight on the sister-in-law's arm. Once in the room, I collapsed on the bed as the concierge drew the curtains, flipped off all of the lights and the left the room to let me sleep. The husband returned a few minutes later after completing the check in process. I took more HC and drank some more Gatorade. Because I was able to keep my oral medicine down, I did not use my emergency injection. He then left me for dinner with friends, because he did not want his first evening in Myanmar to be spent in the hotel room.

I ended up sleeping seventeen hours straight. I woke up the next day feeling much better, but still a bit unstable. I took the morning easy as I tried to stay in as quiet of an environment as possible. I also remained on a higher dose of HC. As the day continued, it appeared as if I would have the strength to journey to the other side of the river. I would be able to speak.

I was able to make that journey.

Part of the path I walked across.
I was able to deliver my message.

Half of the audience.
I was able to share my passion to remain Clearly Alive.

"I choose to see this disease as a blessing."

Saturday, June 6, 2015

A Speech to a Village in Myanmar

I used the Malaysian holiday of Hari Raya at the end of July last year to visit Myanmar with my friends who were married in Korea. Not many Americans have the opportunity to visit Myanmar, and I must admit I knew very little about the country besides the fact that my friend was from there. When I were first researching the trip, I discovered a few interesting things. The first thing is that their money the kyat is actually pronounced jet. The second thing is that prior to 2012, there was no exchange rate for USD to kyat.

The Kyat to USD conversion did not exist only a few years prior.
I was journeying into a land not yet saturated by tourism. As part of my trip, I was invited to speak at a local church. To reach that church, we had to cross a river on a small boat, walk through a crowded street, and then walk along open fields on stepping stones that slid in the uneven muddy ground.

On a small boat crossing the river.
Below is a typed adaptation of the speech I delivered to that local church. May y'all enjoy it.

The open field.
I have always been sick. But if you just look at me, you would never know. I was hospitalized several times as a young child for severe dehydration. I had countless episodes of fainting, vomiting, extreme fatigue, and uncontrollable anxiety. By the time I was fourteen, my mom was firmly convinced that I was going to die. She saw me continue to waste away before her eyes. She took me from doctor to doctor as I barely had the strength to stand. We finally found a kind and compassionate doctor who ran a blood test. I was then formally diagnosed with Primary Adrenal Insufficiency.

There is no cure for this disease. 

I will live with it for the rest of my life.

Disease. What a scary word. Especially for a teenager. And this disease is rare. It took over a decade to reach a diagnosis. Frankly, it is a miracle that I am still alive.

Primary Adrenal Insufficiency. What does that even mean? Well a major gland in my body is broken. The adrenal glands sit atop the kidneys and are responsible for the "stress" response. My body does still produce adrenaline. However it does not produce any cortisol. I must take medicine daily, otherwise I die.

Cortisol helps you respond to stress. Now there are several types of stress. There is the physical stress, such as breaking a bone or running a fever. Stress can also be mental, such as a super hard test at school. Finally, there is emotional stress, such as a fight with a friend or a death of a family member.

But not all stress is bad. I consider traveling the world a type of good physical stress. When I attempt to solve a complex engineering problem, that is good mental stress. And all of the excitement around a friend's wedding is good emotional stress. I say all that to show how it is impossible to live a stress free life.

Your body naturally adjusts for all of these stressful events. My body does not. I can quickly die from a simple fever if I do not adjust my medicine. I must be very careful about the food I consume and the water I drink. I always wear a bracelet that labels my medical condition. You will never find me without my medicine or my emergency injection. I carry my own food and water everywhere and try to be around at least one person who knows how to administer my shot. My life looks very different than the lives of those around me.

I have an additional burden to carry.

This leaves me with two choices. 

I can choose to become all consumed with this burden. When that happens, I become very negative and cynical and begin to just shut down. I do not want that. Instead, I choose option number two. I choose to prove to the world that I am not defined by my disease. I am Clearly Alive.

I am so much more than my surrounding environment.

I am so much more than my present situation.

My value as a human is not based off of what I do.

I am more than a list of labels and diseases.

I am Clearly Alive.

I am different, and that is not a bad thing.

I choose to see this disease as a blessing. Does my claim of being Clearly Alive mean that I never struggle with depression? Do I never have bad days? Absolutely not. April 2013, my disease flared up horribly and I was really close to dying. Overnight, I went from being very self-sufficient to relying on my mom for just about everything.

During those following months, I was so burnt out. I wanted to give up. I was tired of fighting. I could not carry the weight of my burden alone. This is where the support of others comes in. When I was too weak to walk, I leaned on others. They helped carry me, reminding me of my mission to be Clearly Alive.

But how does this apply to y'all? 

Well, I challenge you to choose joy. Joy does not come from your surrounding circumstances. Joy does not come from your feelings. I can easily choose to be bitter about my disease. But bitterness destroys me. Instead, I choose to be Clearly Alive. I choose joy.

Now there are times that I am not always joyful. That is ok. I challenge you to also surround yourself with people and relationships that help support you. When you are too weak to walk, allow them to carry you. When you doubt yourself, allow them to remind you of who you are. When you regain your strength, allow them to celebrate with you.

You cannot live in isolation. We are meant to be in a community.

When people look at me, I want them to see me as different. But I don't want them to see me as different because I am diseased. I want them to see me as different because I am Clearly Alive.

I want to be different. I want to be Clearly Alive.
I challenge y'all to prove the same. Will you join me?
Half of the audience.
I almost had to cancel this speaking engagement after my crash at the Yangon airport. We were unsure if I was going to be able to go out in public or be able to handle the commute to the other side of the river. There was so much uncertainty about the entire event.

However, I was able to speak. I was able to deliver my message. We spoke despite the torrential rains, despite the electricity cutting out half way through, despite the fact that the night before I had slept 17 hours straight.

I am so thankful I was able to present my message.

And now, dear readers, I present you with the same challenge. Be different. Choose joy. Prove that you are Clearly Alive.

Will you join me?