Between Weakness and Strength

The story behind my scar, why I ran a 5K, and the significance of smiling

There was something wrong — maybe multiple things. I could feel it but I couldn’t describe it. My family and friends asked me to explain it but they couldn’t understand it. What was transforming me from a healthy energetic teen to a frail pile of bones? How did no one know what was wrong with me? Would I ever recover?

December 2007 — I was a typical overachieving 16-year-old in 11th grade. I took 3 AP classes, was an officer of Asian Student Association, and had plans of becoming a doctor. I was a headstrong perfectionist and made sure nothing went wrong with my life. I also started noticing the weakness.

The symptoms first started in my throat. My voice took on a nasal quality and I had trouble enunciating hard consonants. Then it got progressively harder to swallow. For a few weeks, I thought I had a minor cold because they were mild weaknesses that came and went. But when it became hard to smile, I knew something was definitely not right. It had always been easy to make me smile, but my facial muscles were so paralyzed most of the time that I could only force an ambiguous grimace whenever I wanted to show delight.

My ambiguous grimace, 2008

February 2008 — I barely spoke voluntarily and limited my diet to soft foods and very small portions of regular foods. I struggled to get through the last half of every choir class. I practiced smiling in the mirror every day but couldn’t quite get that big dimply grin I used to have. And it didn’t stop there — I had trouble brushing my teeth because my hand couldn’t grip the toothbrush well and my arm got tired easily. Climbing stairs were difficult not because of the physical exertion, but because my legs felt like jelly after just one flight. Reading, one of my favorite hobbies, sometimes became a chore because of dizzying double vision. I was gradually losing control of my body and didn’t know how to get it back. Those closest to me, my parents and sister, started noticing the weakness too and tried to help but could only suggest that I go to the doctor.

I entered my doctor’s private practice clinic with hope because I was finally getting medical attention. I explained to him the main symptoms: difficulty swallowing, changing speech patterns, double vision, and weakness. My voice was mysteriously clear that day, so he didn’t see the urgency in that. I confided to him about my embarrassing struggles, including how I fell while boarding a school bus one morning. That intrigued him, so he asked me to hold a yoga-chair-squat post for a minute. I fell after a few seconds. He laughed, told me I needed to work on my balance, and gave me a referral to an otolaryngologist, or ear-nose-throat (ENT) doctor.

I left my doctor’s private practice clinic with shame and anger. I finally got medical attention but wasn’t taken seriously. I cried on the car ride home, losing my last bit of hope by the time we got to our front door. I didn’t want to go to the ENT doctor and have another medical professional laugh at me, but my parents insisted that I delve further since I had already gotten this far.

March 31st, 2008 — I was taking acid reflux pills and other unhelpful medications that the ENT doctor prescribed me. I was getting even weaker and realized that everything I’ve tried up to this point wasn’t working. My ENT doctor realized this too and suggested that I have an endoscopy during his next available appointment in June. My dad couldn’t play the waiting game anymore and rushed me to the emergency department after school.

For the third time, I recounted my symptoms to a doctor. My voice was unclear at times, and the hospital staff could tell that this was a dire situation for my family and me. They admitted me overnight to run more tests. My mom stayed overnight on the recliner next to my hospital bed. I dreaded sleeping in a hospital and wondered how many nights I’d spend away from my own bed before they figured out what was wrong with me.

April 1st, 2008 — I was diagnosed with myasthenia gravis (translation: grave muscle weakness). The doctors made their rounds early in the morning and crowded around my bed to share the good news. All the tests came back positive for this rare neuromuscular autoimmune disorder that temporarily prevents my muscles from getting signals from my nerves. The doctors explained that all my seemingly unrelated symptoms were linked by this one disease. Even though there were no guaranteed cures, it was manageable through prescription medications, diet/lifestyle changes, and surgery.

WOW. Months of struggling through my daily activities and anxiety over a mysterious illness finally led to a single diagnosis. I no longer feared becoming permanently disabled or becoming perpetually weaker. For the first time in a while, I felt positive. The doctors were positive too as they wrapped up their examination, gave me tips on how to cope with intermittent weakness, and explained how the prescription medications worked on my neuromuscular junctions. Everything in the world seemed ok again, and I was discharged from the hospital after 3 days.

Realizing that my life wouldn’t be quite the same after this diagnosis, my family and I started adjusting to my new needs. The dietitian suggested that I increase my caloric intake to make up for months of eating very sparingly, so my parents bought multiple packs of Ensure smoothies. I made arrangements with the school nurse so that I could leave class every 4 hours to take my pyridostigmine pills. My sister, Tammy, was more aware of my physical weakness and did heavy lifting for me when it was obvious that I was in a temporarily weak state. With these new practices, I started feeling more like myself again.

April 14th, 2008 — I woke up feeling weaker than ever. With the changing seasons, I came down with the flu after only a week of adjusting to my new lifestyle. I forced myself to get out of bed and eat breakfast. I decided I was too sick to go to school that day, so my dad helped Tammy get out of the door while my mom helped me get back into bed. Suddenly, I felt nauseous and took a detour to the bathroom where I threw up the little food that I had earlier. That made me feel even weaker, so I sat down on the toilet and tilted my head onto the bathroom counter. My throat wasn’t clear yet but I was too weak to continue throwing up, so I coughed as hard as I could to clear it again. Nothing. My mom rushed to get me water, thinking that I could clear my throat by swallowing. That made me cough even more. Soon, I was having trouble breathing and started gasping for air. My mom panicked and asked me what I needed. Whatever was blocking my airway also blocked my words. I weakly raised my finger and drew the numbers in the air: 9–1–1.

Within 10 minutes, my mom got us ready to leave the house, the paramedics arrived, and my dad and Tammy were trailing behind. I sat at the bottom of the stairs straining to take breaths as everyone there analyzed my situation. The paramedics gave me a moderate flow of oxygen to help me breathe more easily, but it was obvious that I needed more than that. After a quick chat with my parents, they decided to divide and conquer. My dad and Tammy got into a car headed for school. The paramedics, my mom, and I got into an ambulance headed for the hospital I was discharged from just 12 days earlier.

I arrived to the familiar emergency department, but this time on a stretcher. The hospital staff transferred me to a hospital bed with railings. My mom nervously sat on a chair next to my bed. I was still gasping for air with random fits of coughing. She reached above the railings to comfort me. I leaned on her arm, and the coughing temporarily went away. We froze in this deceptively calm position for a few moments, when suddenly a doctor rushed into the room and quickly examined me. A mobile X-ray machine wheeled into the room and took images of my lungs. He realized that what was blocking my airways also filled my lungs. I needed to be intubated immediately as I was already starting to suffer from oxygen deprivation. After getting the ok from my parents, the doctor moved even more quickly and ushered in his team to start the process. They hooked me up to an IV line and delivered strong anesthetics. As I was losing consciousness, I felt the hospital staff jamming instruments down my throat. I wondered how long it would take for the drugs to completely kick in…

Later that day — I was awake but everything was dark. The only light shone through a horizontal slit…was I looking at the inside of my eyelids? I couldn’t feel or move anything…where was my body? I tried opening my eyes — nothing. I tried moving my arms— nothing. I was scared and confused, having a conscious brain but unresponsive muscles. I gave up on voluntary movement and fell asleep again, hoping that I would have complete control over my body the next time I woke up.

I opened my eyes fully and felt completely disoriented. I was cuffed to another bed with railings, someone had changed me out of my clothes into a hospital gown, and I was hooked up to a breathing machine through a tube taped to my mouth. This was the opposite of complete control. I didn’t know how to communicate my frustration with a disabled oral cavity, so I waved my fists until the bed shook.

April 14th–23rd, 2008 — The hospital was my home for 10 days. I had been admitted to the Intensive Care Unit (ICU) because of a severe bout of pneumonia, which was worsened by myasthenia gravis. The best way to treat it was to give me strong medicines while my lungs cleared. A breathing tube entered my throat and delivered mechanically ventilated oxygen straight to my bronchi. A feeding tube entered my nostrils and delivered regulated nutrition straight to my esophagus. An IV line delivered a cocktail of drugs straight to my bloodstream. I wasn’t allowed to leave my bed, drink, eat food, or even talk while in the ICU. The only way I could communicate was through hand gestures, limited facial expressions, a pen, and lots of blank paper.

My experience at the hospital was a blur because I was heavily sedated for most of the time. I vaguely remember watching tons of movies, practicing writing in Vietnamese to my parents, and frequent visits from my sister and cousins. I vaguely remember coughing fits that resulted in a nurse cleaning out my breathing tube by a long and menacing suctioning tool.

The few moments I still remember with clarity were my silver linings. Throughout the entire 10-day hospitalization, my mom rarely left my side. She slept on reclining chairs next to me, was the first to respond to my written communications, and was only an arm’s length away during every emotional breakdown. By the end of our hospital stay together, my mom was no longer just my guardian, but she was also my close friend.

Another moment forever branded in my memory involved a doctor. When I was no longer hooked up to machines and my system was cleared of sedatives, the main doctor in charge of my care gave me a pep talk about my future beyond the hospital walls. She emphasized that I, first and foremost, would be responsible for my health — from taking my medications properly to being more assertive when I needed medical attention. Myasthenia gravis was a lifelong illness, and it wouldn’t go away if I ignored it. This was the first time anyone had ever pinned complete responsibility on me and saw me as an adult. A few weeks after leaving the hospital, I vowed that I would start seeing myself as an adult as well.

May 2008 — I had trouble sleeping through the night, gained weight, and developed stretch marks. The prednisone that the doctors prescribed to me wreaked havoc on my hormones. The worst part was that I got the typical “moon face” of someone taking a high dose of corticosteroids. My friends argued that was the best part since they loved pinching my cheeks.

The first month after being discharged from the hospital, I continued my slow recovery. I needed to readjust to the side effects of the new medication, make up 2 weeks of missed schoolwork, and meet with my neurologist on a regular basis. Luckily, my teachers were empathetic and let me drop a few assignments from my workload. I didn’t finish 11th grade with the best grades, but I was proud to have bounced back academically, socially, and medically after being incapacitated that close to the end of the school year.

My moon face and ambiguous grimace, 2008

Throughout the next year, my neurologist tapered the dose of my prednisone, my weight and face eventually normalized, and I returned to my overachieving lifestyle. However, I continued battling with myasthenia gravis itself. My strength varied unpredictably every few months. I would have gradually increasing strength, which gave me gradually increasing positivity. Then, I would have sharply declining strength, which often spun me into weeks of negativity. I didn’t understand what the problem was because I had taken my medications exactly as prescribed. My hope started to waver again as I approached the one-year anniversary of my diagnosis.

April 2009 — I combed through the internet for every single piece of knowledge on myasthenia gravis, which wasn’t much at all. I read scientific articles to further understand the biology of autoimmune diseases. I Googled medications that had any connection to myasthenia gravis. I scrolled through forums created by others also suffering from my disease. Some were long-time sufferers, having been diagnosed 10+ years ago. Others were new sufferers like me trying to overcome the hardships of taking corticosteroids for the first time. Everyone agreed that their symptoms were unpredictable as well. Those who couldn’t control their weakness with medications had surgery to relieve their symptoms, usually with positive results. Although it was comforting to share experiences with others, it pained me to realize that I might live this way for the rest of my life and that the only alternative was another hospitalization without guaranteed success.

During my next appointment with the neurologist, he saw my diminishing strength and suggested that I get my thymus gland removed via thymectomy. He explained that the thymus gland’s role in myasthenia gravis was still unclear, but that thymectomies alleviated symptoms in 75% of patients. I pondered this statistic and reflected on everything I had gone through since I first became weak 1.5 years ago. Tears rolled down my cheeks as I said yes to having the surgery.

April 17th, 2009 — I was first on the schedule to have surgery that Friday morning and was eternally grateful because I hadn’t eaten anything for over 12 hours. Both of my parents took a sick day to see me off into the operating room. We were all anxious for this day. Would I regain my original strength? Or would the thymectomy have no effect on me? As I was sedated and wheeled away, the last thing I remember with my thymus gland still intact was my parents kissing my forehead. I knew everything would be alright.

I woke up a few hours later in the recovery room with a huge bandage on my upper chest — I was alive! I was woozy and slightly nauseous from the anesthesia. My parents offered me snacks but I refused. My nurses told me to eat but I just wanted to sleep. The surgeon popped in to say that the surgery went smoothly. He knew that I loved biology and promised to send me pictures of my thymus gland. He also told me that I wouldn’t be able to leave the hospital until I ate something, so I begrudgingly had a popsicle and crackers. I recovered over the weekend and only missed one day of school. This hospitalization had been much better than the rest.

My big dimply grin and post-thymectomy scar, 2013

Over the next several years, my weakness still varied unpredictably, but not as severely as before. My strong days outnumbered my weak days. The neurologists prescribed me prednisone at a dose that was physiologically normal. I got used to swallowing pyridostigmine pills without water. My braces were removed, and my big dimply grin was brighter than ever. In fact, the hardest part of having myasthenia gravis post-2009 was explaining it to others — so I didn’t. When people asked me about my scar, I obscurely told them I had surgery because of weakness. When my friends noticed me suspiciously taking pills, I brushed them off by telling them, “don’t worry about it.” I didn’t want anyone to treat me differently because of my illness. I wanted to feel in control of my uncontrollable disease.

August 2010 — I felt strong enough to make another attempt at playing sports, so I went to the first practice of the season for a college flag football team. During our 5-minute warm-up jog, I fell behind. Was I out of shape, or was my weakness creeping back? Was this two steps forward and one step back, or two steps back and one step forward? Throughout this and subsequent flag football seasons, I continued asking myself those questions but gradually found answers to other questions. Flag football not only challenged my physical strength, but also my mental strength. The weaker my body felt on the field, the stronger my mind felt to push through. I didn’t want to simply stop being weak — I wanted to start feeling strong.

August 29th, 2015 — The Muscular Dystrophy Association invited me to attend a Muscle Summit in Pennsylvania. This was an opportunity to meet experts on neuromuscular diseases, learn more about myasthenia gravis from a patient standpoint, and network with others diagnosed with various muscular dystrophies, including myasthenia gravis. I took a 2-hour road trip for this one-day event and became a ball of energy as soon as we reached the venue. Everything about the summit amazed me — the workshops, the folder filled with health-related resources, even the meeting space itself. I wanted to make the most of every moment, so I sat down at a random table and introduced myself to the person on my right. As soon as I told her that I was a pathologists’ assistant student with myasthenia gravis, her jaw dropped. She was also a woman in the pathology field with myasthenia gravis! She showed me her thymectomy scar and we excitedly talked about our respective diagnoses. I couldn’t believe that, after 7 years, I had finally met another person with myasthenia gravis — and this room was filled with dozens more! During lunch, I met a neurologist who treated and did research on myasthenia gravis in Baltimore, where I was currently living. We exchanged contact information so that we could reconnect closer to home. By the end of the summit, I felt more comfortable talking about my disease and was motivated to be more involved with public health.

January 1st, 2016 — As my commitment to flag football shrank, my interest in running grew. I went from barely making a lap around the football field to running a little more than a mile around my neighborhood. I loved the euphoric feeling after finishing a jog. However, I became complacent with my athleticism. For the past few years, I had finished my jogs whenever I got tired and never pushed myself past the 2-mile mark. My body was dictating my strength, but I wanted to prove it wrong. I set a goal of running a 5K race by the end of 2016.

September 4th, 2016 — My friends and I took a trip to Virginia Beach, VA for an annual 5K/Half-marathon race during labor day weekend. Even though I wasn’t sedated, running the 5K was also a blur. My only lucid memory was the last leg of the race, where the course switched from residential pavement to beachside boardwalk. I could hear the waves crashing, feel the sand cushioning my steps, and see the finish line looming in the not-so-distant distance. The corners of my mouth involuntarily curled into a smile. I had finally done what I used to think was impossible. For a few minutes, I forgot what weakness was. I crossed that finish line feeling the strongest I have ever been.

April 2017 — It’s been 9.5 years since I first became weak, 9 years since I was diagnosed with myasthenia gravis, and 8 years since I’ve had my thymus gland removed. Myasthenia gravis has changed the way I experience the world, as well as how I experience myself. In the beginning, I saw myasthenia gravis as an unfair burden — something I was ashamed of and something I fought against. These days, I see it as part of my life. It’s no longer a war of Crysta versus myasthenia gravis, but a journey of finding the balance between weakness and strength.

I’ll never be completely rid of my weaknesses. Sometimes I struggle to swallow starchy foods. Sometimes my arms don’t agree with taking one trip to carry things between the car and the front door. Sometimes one eyelid droops more than the other. But whenever I come across my reflection, I always attempt a big dimply grin. Even if the outcome is an ambiguous grimace, I cherish whatever smile beaming back at me as a symbol of my strength.

My big dimply grin after my first 5K race, 2016