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.
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.
Below is a typed adaptation of the speech I delivered to that local church. May y’all enjoy it.
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.
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 and wanted to give up. I was tired of fighting and 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?
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 challenge y’all to prove the same.
Will you join me?
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.