Stress: How and Why to Minimize It

According to Mayo Clinic, WebMD, and numerous other sources, stress can contribute to an increased risk of stroke. Stress hormones tend to exacerbate several conditions — such as high blood pressure, high cholesterol, diabetes, and heart disease — that increase stroke risk. Of course, these conditions alone are evidence of the negative impact that too much stress can have on the body, but the increased risk of stroke is particularly dangerous for people with Moyamoya such as myself. It may seem obvious that stress is not a healthy thing to indulge, but it is illuminating to consider stress from a stroke perspective.

Despite its demonstrably negative health effects, stress simply seems difficult to avoid. I am currently going through my junior year in high school, and can testify that the experience has been, among other things, fairly stress-inducing. There are always the traditionally stressful events such as exams, performances, competitions, or even college, but I have found that even little, seemingly insignificant things can get under my skin and stress me out. I am fully aware that stress is not a phenomenon exclusive to high school, and I have recently decided that I am going to make a conscientious effort to minimize stress in my life — if not for the numerous dangerous effects of stress, for my mental health and well being.

I view one source of stress as a lack of planning. Academic challenges such as papers, projects, or exams will inevitably induce stress if put off until the last minute. Although school is only one of the sources of stress that I’m sure many people deal with at some point or another, it certainly does not hurt to actively reduce the amount of stress it can inflict. In order to provide some context, I am not a naturally organized person. While I am not a complete mess, I simply tend to go with the flow, often relying on my memory rather than writing things down and staying organized. One measure that I have started to implement in order to tidy up my life is writing out my schedule and goals on a sheet of paper in the morning, ensuring that I stick to it throughout the day. Although I have online calendars and other ways to do this, I find that physically writing everything down helps keep me accountable for staying on task. It also helps me internalize my goals for the day, which provides a sense of structure and direction that I find helpful in alleviating stress. In addition, writing everything out in a clear, organized manner can help to break down intimidatingly large challenges (such as studying for a final exam) into manageable chunks.

Another way that I deal with stress is physical activity. Focusing solely on an exercise or muscular stress, I find, can help clear the mind and calm the nerves. By no means am I suggesting procrastinating through working out or going for a run, but it often helps to get rid of pent up energy through a productive outlet such as exercise. Even when stress is not related to academics, tiring myself out physically can often translate into a calmer mental state. When the time comes to make a difficult decision, a classic stress-inducing scenario, taking time to clear the head through a bout of physical activity can alleviate stress and pressure.

There are also several habits that I have tried to incorporate that tend to calm me when life is getting hectic or stressful. One is drinking hot tea. The deliberate practice of drinking some hot tea has an inexplicable soothing effect on me that simultaneously helps me focus. I suppose that having something simple to do — in this case, sip on a mug of tea — while focusing on the task at hand is comforting, and I also happen to like the taste of green tea. Drinking tea does not intuitively sound like stress-reducing activity, but I have found it to be absolutely effective in helping to set a chill, relaxed tone in my environment. The other habit that I have recently started to implement, decidedly more difficult than drinking tea, is reading for pleasure. With the seemingly non-stop flow of compulsory readings for both English and History classes, it is difficult to find time and energy to read for fun, something that I really used to enjoy. However, following a similar line of reasoning as the physical exercise tactic that I use to minimize stress, reading simply allows the mind to escape the realm of whatever causes the stress in the first place, and is generally a productive and healthy activity in which to engage.

These are some of the ways that I deal with stress. Needless to say, I am nowhere near perfect when it comes to issues of maintaining low stress levels, and there are certainly problems that arise that cause quite a bit of stress in my life. Additionally, I think that my experience dealing with stress and how I have learned — or tried to learn — to deal with it is not specific to my living with Moyamoya disease. However, Moyamoya and the role of stress in increasing stroke risk are definitely reasons why I am relatively aware and active in controlling my stress.

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Chess

Before my first operation, Dr. Gary Steinberg asked me if there was anything special that I wanted to have improved in my brain. Of course, there was nothing that Dr. Steinberg could physically do during the operation to enhance certain skills of mine, but as a seven year old boy I was not yet familiar with the limitations of brain surgeons. I happily said that I would like to become better at chess, a game that I was beginning to enjoy but did not excel at. In fact, during lulls in my time at Stanford’s children hospital, my dad and I would play on a small magnetic chess set.

Following my thankfully successful procedures, I re-entered school and my classes relatively smoothly. One of the mandatory classes from Kindergarten to 2nd Grade at my school is Chess, which is how I was introduced to the game and the reason that my friends and I all played. I did not notice any sort of drastic change to my ability, but started to play at a far more serious level. I began traveling to State and National tournaments and competing regularly in local tournaments. At this point in my life, I can proudly say that I have been participating in competitive chess for almost a decade. Sometimes my family and I jokingly toss around the idea that my operations really did make me better at chess and smarter. Who can say whether or not Dr. Steinberg tidied up the “chess part” of my brain, improving my chess-playing prowess at the ripe age of seven? Nevertheless, considering the state I was in before my surgeries — with frequent TIAs plaguing my weeks — he was responsible for immeasurable improvements in all of my pursuit. So were my parents, Dr. Lori Jordan, my grandfather, and so many others. If not for my diagnosis and procedures, I would continued to have strokes of increasing severity.

In the midst of the notoriously turbulent second semester of 11th grade, it is interesting to take a step back and reflect on my experiences with chess. I played in the most recent National tournament, tying for 5th place in my age group, yet have not had nearly as much time to devote to the game as I used to. However, I have come to realize how much of an impact chess has had on my life. Although I have played baseball for several years and run cross country, chess has been the dominant consistent activity in my life. Among other things, I have learned how to rebound from failure, the meaning and value of patience, how to think ahead, and how to think critically under pressure. In short, chess taught me quite a bit, and there is no doubt in my mind that I will continue to enjoy the game for as long as I live.

Breakthroughs

Several months ago, I had the rare opportunity to go and explore Stanford’s Neurosurgery Program’s new Virtual Reality technology. The Neurosurgical Simulation and Virtual Reality Center was built in 2016, and is the world’s first patient-specific, 360º technology to be used by a neurosurgery clinic. I was fortunate enough to be toured by Malie Collins, the Program Coordinator of the Stanford Neurosurgical Simulation and Virtual Reality Center, and Dr. Gary Steinberg.

During my time there, I was able to experience the VR technology myself, exploring the inside of other people’s brains — a shockingly clear and vivid representation of what was previously a tangled mess. It was a surreal (and, admittedly, cool) experience to be able to look around a patient’s brain in order to see what was happening. The technology eliminated the tissue from the image while also providing the viewer a chance to manipulate and move through it. Simply put, doctors and patients alike no longer need to visualize the brain in their imagination, for now it is right in front of them. It was even possible to simulate various procedures, almost like something out of a science fiction novel.

Over four hundred patients have used this technology at Stanford since its inception, and that, to me, is amazing. Just in terms of comfort alone, it must make a world of difference to see exactly what your surgery will look like, without having to rely on a purely verbal depiction. Also, the powerful visualization that it provides to surgeons can eliminate any doubt heading into an operation — a priceless tool. While I certainly wish that this technology was around when I was getting diagnosed, I am happy that we are bridging the gap between medicine and technology. Stanford is at the forefront of Neurosurgical practices and innovation, and the rest of the country is sure to follow suit with this new VR technology.

Led by Dr. Steinberg, Stanford has also been revolutionizing the field of stroke recovery, exploring stem cell therapy as an option. His work has seen astounding results, with overwhelming success on the part of this unconventional treatment method. Making strides to accomplish what was widely regarded as impossible, Dr. Steinberg was named one of the eight Smithsonian 2017 Ingenuity Award Winners. Dr. Steinberg joins the ranks of Elon Musk, Jeff Bezos, Lin-Manuel Miranda, and many others as Ingenuity Award honorees, a remarkably prestigious circle of innovators.

I’m incredibly grateful to have a doctor like Dr. Steinberg, who is not only one of the best expert in the field of Moyamoya, but is shattering limits that were seen as absolute in larger fields such as stroke recovery. The work that he is doing to rethink the way we deal with strokes and what is, indeed, possible is crucial in the fight against Moyamoya and other diseases like it. Thousands, even millions of lives will benefit off of his innovative spirit and successful practices, and that is something far bigger than just my operations in 2008. I’m also grateful to have had my operations at Stanford, which has one of the world’s leading Moyamoya program. I look forward to seeing the fight against Moyamoya continue — one day, I hope to see the disease erased as a whole.

Running

As of the diagnosis a few weeks ago, I have hip injuries. They are not serious, but require my absence from my school’s Cross Country team as well as physical therapy two or three times a week. In fact, I did some physical therapy earlier this week after school. During this hiatus from running on the Cross Country team, I have really been able to step back and view the experience from a fresh perspective.

During the season, when running around 30 miles a week with grueling meets every week, it is difficult to pay attention to anything but keeping your head afloat, getting through every practice and meet intact with the end goal of improving your speed. While the long runs through Central Park or hill repeats at Van Cortland Park can certainly be difficult and require real mental fortitude, meets are the most grueling in my opinion. The race, around 2.5 miles in length, is non-stop pain — both mental and physical. Especially when running with the Varsity group, where so many other kids are extraordinarily fast, it seems like I’m pushing myself to the limit and still coming in at the back end of the group. The beginning of the race represents the first of the emotional pitfalls for me, as most everyone sprints right out of the box. Even though coaches say that it is a bad strategy, I never manage to see many of those sprinting runners ever again throughout the rest of the race. This is one of the few flat sections of the race, and being at the very beginning, adrenaline can play a key role in boosting my speed. Unfortunately, this adrenaline boost wears off just as the massive horde of scantily-clad high school boys nears the hills — the worst part by far.

As the vast expanse of field narrows down into a small dirt opening to the hills, things start to get messy. There are shoves and feet-stepped on in the process to get into the hills without finding oneself stuck behind a row of ten runners seeking to fit into an opening that fits only two side-by-side. At this point, my adrenaline starts to wane and I find myself thinking, “Why did I sign up to do this?” Usually, I develop a small cramp heading into the hills, which is not the ideal moment to cramp up. Anyways, the crowd thins out in the hills, as each runner struggles with the steep, dusty inclines and the sounds of heavy breathing behind them. When you are running in the hills, there are no coaches, no parents or fans, just you and the other racers, left to fend for yourselves. The difference between success and failure is how hard you push yourself when you are the only one that can. No peer pressure, coach/parent encouragement, nothing. You could even just give up on one of the tougher hills, later chalking it up to an injury or slipping. For me, my legs usually max out in their capacity to bring me up steep inclines only around halfway through the hills. However, I keep going, often breathing very heavily and taking mental note of the many pains going on across my body.

Last year during the final race, the championship race for our league, it was only around 50 degrees out and the team wore only the uniform: a loose tank top jersey, and incredibly short shorts that covered half the quad if lucky. The cold hit hard, but luckily, after around five minutes of pain, receded into a dull throb. My knees hurt more than usual, and breathing was more difficult. Rather than thinking about the pain — which was getting harder to ignore as the race progressed — I decided to try to think about things that made me angry. Imagining scenarios worse than the one I was currently in, and somehow convincing myself that running harder would keep me from those terrible scenarios, was my chief strategy.

Now, this was the last meet of the year, and there were certainly expectations. The team was vying for a spot in the top five, something that our team had not managed to do in a few years. I had also gotten a faster time every single meet that year, which was something I was hoping to keep up. None of this was in my head, however, as I neared the finish line. My numb limbs were starting to get to the point where they were stinging again, and my muscles were definitely feeling the impacts of running up and down dusty hills for 1.5 miles. As the big yellow post rose out of the horizon as I exited the hills, I felt a sense of cautious optimism. I knew, from previous races, that the distance between the hills and the finish line was deceptively long, so I did not want to get my hopes up. The last stretch can feel especially long as you cannot help but focus your eyes on the bright yellow sign that stands right out in the green grassy field. After what felt like half an hour, I ran through the finish line and gasped for air. Looking up at the timer, I realized that I achieved another season best time! I was stoked, as that was the perfect end to the season. I ran a 15:53, which was seven seconds faster than my last race. My calves were cramping, but I did not really care, since I knew that I would not run the painful race for another year.

As I was walking around, talking to my teammates about the race, I remembered the constant advice, from coaches and teammates, to keep hydrated before practices. This meant early on in the school days, since playing catch-up would lead to dehydration during runs, which was painful and exhausting. I had actually maintained high levels of hydration throughout the season, mostly due to the constant reminders set out by the team. I also knew that there would be immediate consequences to showing up to practice dehydrated, as the run would be exponentially more difficult. Thinking back to this made me realize that I should not need to stay hydrated exclusively during the season, but throughout the rest of the year as well. As someone with Moyamoya, it is imperative for me to stay hydrated even throughout normals days. Yes, it can certainly be difficult to remember to drink water when the day is jam-packed with activities and there are a thousand thoughts and concerns whirling around, but I need to be able to remember, and that is perhaps the most important lesson I took away from the season.

Birthdays

Several days ago, as I was scrolling through Facebook, I noticed something unusual: A notification stating that it was FIVE of my friends’ birthday. Given the number of Facebook friends I have to begin with, this notification was odd. Statistically speaking, only around 1.5 of my Facebook friends should have a birthday every day. Regardless, my thoughts naturally drifted to my birthday. Although it is quite far on the horizon, I could not help but remember the fun times I have had in the past. One of my favorite things to do is take my friends out to a Korean BBQ restaurant. It is almost always a crowd favorite, and, in my opinion, the best type of food out there.

Whether the activities include an authentic Korean food experience or a Super Bowl viewing party, one birthday tradition stays the same. Rather than asking for presents or gifts, I ask my friends/family to donate money to the Moyamoya research fund at Stanford (there is a link on the top right corner of the website). It seems cliché as I am writing this, but I truly appreciate any donation to the research fund more than a material gift. Any aid to the research for a cure to Moyamoya cannot be quantified in its value the way an IPhone or Xbox can. As someone who was lucky enough to be thriving over ten years after my diagnosis, I feel as though it is my duty to ensure no one has to go through the experience that I or any other Moyamoya patient did. It is a terrifying experience especially due to its rare nature; there are probably millions of people living with the disease without even knowing it.

One day a cure will be discovered — this I am certain of. However, the reality is that no progress will be achieved without financial support. I pray that the day that we find a 100% effective, surgery-free, affordable cure for Moyamoya happens while I am still alive, and I will do anything in my power to ensure that this goal is fulfilled. The impact of a realized cure for Moyamoya is intangible and has the potential to affect billions in the long run. This is why I truthfully do not harbor any doubts or regrets in my decision to ask those willing to donate to the research fund rather than give me a material gift. When asked if I “miss getting gifts” for my birthday, I respond by explaining that a donation is not only a gift, but for more than just me. Fortunately, I was diagnosed and operated on just in time, and have been doing well since. The gift is for those who are currently struggling — whether they know it or not — with Moyamoya, It is for those who have not even been born yet but will enter the world with a life-threatening progressive cerebrovascular disease.

There are certainly other aspects key in the fight against Moyamoya, such as raising awareness. However, they are all related. Raising awareness can lead to an increased effort to garner financial support for cure-related research. More money funneled into all different aspects of Moyamoya prevention/cure can be crucial in spreading awareness. They go hand in hand, and are equally important in addressing. I will maintain my annual tradition again February 2018, and keep in mind those who will be impacted.

 

Reflections on a Mission Trip

Here are some photos from my trip; read more to find out the context behind them.

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A few weeks ago I embarked with my church on a mission trip to Corozal, Belize. Our task was two-fold: help rebuild the home of the pastor of the local church and run a small VBS for the local children in the community.

Our trip to Belize began at 3:00 AM, as our flight was early and it was a long drive to the airport. Heading into the experience, I was nervous and did not know what to expect. This would be the first service trip ever for me, as most of my other traveling was for leisure. A combination of what I have heard from friends and seen on social media left me with the impression that there would be plenty of Instagram photo-ops and little connection with the locals. A friend of mine had gone on a similar sort of trip a while back and posted a photo of her with a small child with the caption: “I want one”. This is the sort of experience I thought I would have.

We took a connecting flight to Belize, and I slept most of the first leg of the trip. Everybody was relatively tired, and social groups started to form. By the end of the second flight, I was busy filling out the customs sheet we needed to enter the country. I had an aisle seat, and my friend grabbed my shoulder suddenly, interrupting my world of passport numbers and Eminem. She pointed to the window, and I moved as far as the seatbelt let me to see what was going on. The view was breathtaking. Sparkly turquoise waters spread across the template the airplane window allotted, with splotches of darker water and land spread throughout. The closer we got to the airport, the more the landscape changed. The beautiful water gave way to dense bunches of forestland that were parsed by thin, dirt roads and small towns.

When we touched down in Belize and exited the plane, a wall of heat and humidity hit me. I had been wearing thick sweatpants for the trip since airports and planes are usually on the chilly side, but I immediately regretted it. For the same reason, I was also wearing a hoodie and wanted to take it off. But our trip had some guidelines regarding clothing since we did not want to offend anyone and I was wearing a tank top underneath. Even when entering the airport — there were fans set up — I was sweating and ran to the bathroom to change into a t-shirt. We got our bags and met up with the people running the mission trip outside. We only spent ten minutes waiting for the bus to meet us but beads of sweat were dripping down my neck. When a white-painted school bus met us, we piled in and quickly found out that it felt like an oven.

As soon as the bus started moving, a breeze hit us through the windows — all of which were opened or discovered broken. The bus ride was long, roughly 2 hours, but mercifully it was interrupted by a stop at a restaurant by the side of the road. The small patch of land where the restaurant was located also housed several shacks, with children playing with what seemed like a soccer ball and adults sitting down watching them. This stop was also where we saw our first few dogs, many of which would come later. The meal was surprisingly good, and gathered quite a few grunts of contentment. Everybody was fixated on the sodas, all of which were made with real cane sugar.

After exiting the restaurant, full and happy, we embarked on the latter leg of the ride to our hotel. The location of our hotel was right on the edge of the bay, overlooking the greenish water and cities in the distance. We rushed — leaders and students alike — to find out where we would be spending seven mornings and nights. Perhaps the most satisfying material discovery on trip (besides the food — but more on that later) was that our rooms had AC and a fan. I did not care about the small, musty smelling bathroom or the oddly bumpy beds and pillows, but absorbed the much missed AC during the nights. Of course, we became spoiled every time we left the rooms, hit hard with the heat and humidity, but entering the rooms and turning on the AC after a long, sweaty day of work elicited an indescribable feeling.

The next day, we went to the church we would be working with for a morning worship service. It was located in a small town, comprised of lots of dogs, dirt roads, and run down houses. The service was mostly in English, yet the pastor only spoke Spanish, leaving the majority of our group with confused faces. After the morning service, we walked around the town in groups — literally going door to door — asking people if they would like to send their children to the VBS we were running at the church. Along the way, I got to see what life was like up close. Children would run around, either helping their parents with chores or relaxing under a tree eating fruit. There was lots of fruit everywhere, mainly growing on plentiful trees across the town. One of the children that we were walking with offered us some fruit which we picked off of the ground, of which I still do not know the name. The culture — from as far as I could observe — was tightly knit and very communal (the opposite of NYC).

After we recruited for our camp, we returned to the church for another worship service. Upon returning back, we were greeted by a group of ladies who served us dinner. They cooked for the church and had made us a delicious meal of chicken, beans and rice. We devoured it with a mixture of gratefulness and contentment.

Later that evening we had a debrief session with the missionaries who were running the operation and learned about the conditions we would work in and the rules we needed to follow. In sum, we learned three things: one, we would need to wear long pants and long socks in 90 degree, 100% humidity conditions; two, bug spray would be our best friend over the course of the next week; and three, we need to drink water and gatorade like there’s no tomorrow. We also found out that there was a nearby grocery store that the hotel had a good relationship with.

Lying in bed that night, a thousand thoughts raced through my head. I was not sure if I would have the strength to maintain a strong, persistent attitude whilst working in the immense heat and humidity that I’m sure I would face the next day. I also spent a considerable amount of time thinking about how and if I was going to adapt to the conditions of our environment during the following several days.

Alas, morning soon arrived — rather early, at 6:30 — and we all marched down from our rooms to eat breakfast. Somewhat of an American-style breakfast met us, with eggs, sausage, and pancakes, and we chatted about our nights and the day ahead of us. Armed with long pants (cargo pants for me and my brother), heavily lathered bug spray (which smelled terrible), and full water bottles, we boarded the bus and embarked for the first time to the work site.

The work site was located next to the church we had visited the previous night. We got off the bus and were greeted by one of the elders of the church who would take the role of leader on the site for the next several days. The first task at hand was to strip and repaint old screens from the pastor’s home. There were about ten of them, so most of our team focused on that. The remainder of the group started to paint the house. Work continued through the morning until our lunch break. This is where we got our first taste of authentic Belizean food — and it was heavenly. To us, it seemed like the cuisine was Mexican food. With more emphasis on chicken, lime, and other spices, Belizean food quickly became one of my favorite kinds — ranking up there with Korean food in my mind.

After lunch, we continued work till around 2:30. Then we started to welcome the kids into the church to sing some songs and played games. Something that I started to notice right away was that most of the children, even though they were very small and young, were incredibly talented at soccer. Often without shoes on, they could kick hard, control the ball well, and run very fast. Playing and interacting with the children — really getting to know them — was probably one of the more gratifying experience I had on the trip. I found them to be so genuinely happy and lighthearted, excited to have the opportunity to kick around a new soccer ball or do a craft that it energized me and allowed me to give it my all during the VBS even after working for hours before.

Following the end of our VBS session, we would eat dinner — again prepared by the group of women who had cooked for us at lunch and at the previous night’s dinner. The food was fantastic, in part due to our hunger, and we went back to the hotel to rest.

The next few days went in similar fashion, with lunch and dinner serving as well-needed times of restoration and encouragement. They were landmarks in the day; something to look forward to. As the week progressed, the soccer games and piggy back rides started to add up and I really got to know several of the children in the town. Our team eventually moved on to focus more on painting the house rather than the screens, and we became more and more adventurous with our fruit experiences.

One of the tasks I had was to drive out to a different site where all of the missionaries’ gear and tools were. I, along with three other students, a leader, and one of the missionaries reorganized a large storage unit loaded with rusty equipment and water coolers. Because we were working close to noon, the sun beat down on the metal storage unit and made the inside feel like an oven. We also needed to use work gloves in order not to get cut by the rusty tools. This activity took more mental endurance than anything else on the trip, but after completing it — rather efficiently, if I do say so myself — I felt a great sense of relief and pride.

At the end of the week, after working on the house, we had a rest day. This was our day to act more as vacationers or tourists than mission workers — and we fulfilled that role pretty darn well. Not only did we get to snorkel with sharks, but also walked along the beach buying trinkets and great food. It was the perfect day of relaxation that we all deeply needed, but also provided a sobering reminder that we only temporarily immersed ourself in a different environment, and would be returning to our lives of relative wealth and comfort — leaving the community we learned to love behind.

I thought about this on our flight back to NY, and how all of the hours and energy I poured into our work in Corozal is really nothing in the grand scheme of things, and how large the gap was between what I wanted to change and what I could change. However, the journey and growth that I was able to enjoy over that week cannot be understated. The ability to do meaningful work and spend time with a community in need — not to mention the novelty of a trip like that for me — is truly a blessing.

I am grateful to everyone who allowed me to healthily journey down to Belize, regardless of how direct their role. Of course, I am extraordinarily thankful for my parents, the church, and the various donors who enabled me to travel in the first place. But equally important are those who saved my life: the Stanford team, Dr. Steinberg, Dr. Jordan, and my grandfather. In the midst of a busy and hectic trip like Belize, it was easy to forget how lucky I was to be there in the first place.

 

From Patient to Student; A Different Side of Stanford

The last time I was at Stanford, it was for a check-up with Dr. Steinberg to ensure that my operations back in 2008 were working. I remember an angiogram, an MRI, and too many IV’s for my liking. The time before that had been another scheduled check up, and the time before that had been my surgery. Essentially, my only experiences with Stanford thus far have been related to Moyamoya and keeping it at bay. This all changed a few weeks ago.

Back in early February, I was contemplating what I was going to do with my summer. Several of my friends had already secured internships, decided to go back to their camps as CIT’s, or pursue studies at summer programs. One day, while in Chemistry class, I saw my friend filling out an application. My curiosity sparked a conversation, and soon I became aware of one of the summer programs that Stanford offers.

“You better hurry up,” my friend said, “the app is due in a few weeks and there’s a ton to write.” I do not remember ever feeling such a drive to write. Not only did the course I chose interest me, but there was this desire to see the “other side” of Stanford: one of students, classes, dorms, and a campus; not of doctors, nurses, IV’s, and sterile white hallways. My understanding of Stanford — the thoughts that came to mind when the name was mentioned — was different than most going into this summer.

Several months later, I arrived at my dorm, excited and nervous. This was the first time I had been away from my family for over a week. I was there to study International Relations at one of the summer programs for high schoolers. Over the course of the next few weeks, I met intelligent, inspiring people from all across the world, made lifelong friendships, and learned a lot. My first time walking across the campus — I got lost due to my terrible sense of direction — I was awestruck at its size and unique beauty. The red tiled roofs and palm trees, as well as the fountains completed the relaxed yet lively environment. The people I met at Stanford transformed my experience. While one may be able to see all that I did as a tourist or visitor, the professors, graduates, students, and fellow classmates that I interacted with expanded my perspectives on life and taught me more about myself in the process. Sure, I learned tons about the global economy and the ways that countries interact with each other, but I also learned what it meant to be independent, make lasting friendships of my own, and explore a sprawling campus and decide what my place there looked like. In short, I experienced, albeit for a brief time, what it felt like to be a college student.

Moyamoya Day Reflections

Note: Earlier this month, California officially recognized May 6th as Moyamoya Disease Awareness Day (http://scopeblog.stanford.edu/2017/05/04/may-6-officially-recognized-as-moyamoya-disease-awareness-day-in-california/)

This past Saturday was World Moyamoya Day — but only to those within the tight-knit Moyamoya community and their friends/family. There has been an effort to get the World Health Organization (WHO) to recognize May 6th as “World Moyamoya Day”, yet the WHO’s decision that the disease is not “major” enough to receive recognition in this form presents a roadblock. Because of this, there is a petition, one spearheaded by Tara Macinnes, to persuade the WHO (World Health Organization) to formally set May 6th as “World Moyamoya Day”. The link to the petition is under the “Important Links/Other Sites” page of this website, but I have copied it below as well:

http://www.thepetitionsite.com/831/455/587/moyamoya-disease-awareness-world-moyamoya-day-may-6th/

Getting as many signatures as possible — telling friends, family, or peers about this petition — is absolutely crucial to the spread of awareness of Moyamoya. There are around 5,000 signatures needed for the petition to be legitimized. I write often about the need for increased awareness about Moyamoya, yet do not regularly explain why it is so necessary. I was misdiagnosed almost a dozen  times by otherwise qualified doctors and neurologists before being succesfully treated simply because of the “rarity” of Moyamoya cases; however, a trained or aware doctor could have observed and picked up on the rather textbook signs of Moyamoya that I exhibited in MRI’s. The issue is not necessarily  with the doctors themselves — who are representative of the general medical community and was as the public’s knowledge of Moyamoya — but with the fact that almost nobody a) expects to see cases of Moyamoya or even b) knows what it is. Fortunately, I was able to be seen by one of the leading experts in Moyamoya, Dr. Lori Jordan (see my interview with her a few blogs down) and was properly diagnosed.

However, the sad reality is that not everyone has been/will be as fortunate as I was; The correct diagnosis of Moyamoya disease is not difficult to make when a doctor is informed and aware; with proper resources such as an MRI or an angiogram, the signs of Moyamoya in the brain’s blood vessels can be easily distinguishable.

All current statistics indicate that close to 1 in every 2,000,000 people in the world have Moyamoya — hence its status as a “rare disease”. However, factors such as misdiagnoses have led researchers at the Stanford Moyamoya Center to estimate that the actual number is closer to 1 in 200,000. The  astounding difference in the two estimates of Moyamoya cases per population concentration is incredibly worrying, especially given the progressive nature of Moyamoya. The longer the disease  goes untreated, the more one is vulnerable to repeated strokes which could lead to increasing cognitive and physical damage  or death.

This is why raising awareness for Moyamoya is so important; this is why we need to convince the WHO to recognize May 6th as World Moyamoya Day. It is tragic how an unknown number of people die every year because of stroke or hemorrhage due to an undiagnosed or belatedly diagnosed case of Moyamoya.

Another reason that signing this petition — taking 5 minutes of your day (maximum) in order to further a life-saving cause — is necessary is the funding for research. Just as a WHO-recognized awareness day would raise awareness for the disease, it will attract attention towards the research being done at leading clinics around the world. There is currently no cure or prevention method for Moyamoya, and there only exist surgeries to aid in improving cerebral vascularization. The problem is, however, the lack of access that many people have to get the MRI’s and angiograms, not to mention surgeries, in order to beat back Moyamoya. Drawing more attention to the severity and relevance of Moyamoya disease everywhere around the globe could potentially fuel research to find a cure.

 

Baseball and Gratefulness

One of my favorite things to do is play baseball. I have done so for years, and am part of my high school’s baseball team. I love the community, excitement, and competitiveness that the sport provides, and hope to continue to play for as long as possible. Although I am not a freak athlete or a stand-out prodigy, I still value its role in my life and continue to play.

Baseball is only one of the activities that I enjoy and am fortunate enough to pursue. I run Cross Country, teach and play chess, play guitar, participate in Model Congress conferences, and more. Nearly none of my growth and experience in any of those fields would be possible without my successful surgeries. I would not be able to do much of what I now love if I continued life undiagnosed and untreated like many out there. The minor strokes that I had would have gotten worse and more frequent the longer I went without treatment, and that is unfortunately a reality for many of those with Moyamoya. The rarity and lack of awareness around Moyamoya is ultimately the deadliest factor, and one that led to several of my misdiagnosis.

Earlier this week, during one of the first games of our school’s baseball season, I dove to catch a fly ball. After making the play, I felt a rush of gratitude. I tend to take my health for granted, and not think about the very real possibility that I could have suffered a major, paralyzing stroke before I was successfully treated — or even that my operations almost a decade ago did not produce the optimal results they so far have. It is too easy to get lost in comparisons to my peers on the team, or players on the opposing team. This leads to a disregard for how far I have come since my first TIA at the age of 5.

The attempt to more consistently recognize how privileged I am to have been diagnosed and treated before any serious, lasting damage — physical and mental — has led to a more humble attitude as well. Rather than accrediting any achievement solely to myself and getting self-absorbed, I instead think about all of the kind nurses at Stanford, Dr. Steinberg and his skills/expertise, my parents, and all of my friends and family that supported me through a time of need — all of whom contributed in their own ways. It is important to keep in mind that it is a blessing to be healthy, especially if you have a disease such as Moyamoya that does not have a definitive cure and lacks awareness.

 

Dehydration and Everyday Life

As someone with Moyamoya disease, staying hydrated is especially crucial to my health. However, as a relatively active and busy teenager, it can become easy to forget to drink water and stay hydrated. Usually I try to carry around a water bottle during school, as it provides a physical reminder to drink. In engaging and stimulating settings such as school, social situations, or sports, getting carried away and neglecting to stay hydrated can be easy — bringing a water bottle with me makes keeping hydrated easy and simple. I often find myself in situations where I have been concentrating on one thing for such a long time that when I finally get something to drink, I realize how thirsty I am. For example, during a packed and busy day at school, there can be lots on my mind other than drinking water. Even when eating lunch, I tend to drink less hydrating, sugary drinks such as lemonade when my body needs water.

The irony lies in the accessibility of water around me. Despite the privilege of usually having a source of clean water, I do not often take advantage of it. This is not in an attempt to scorn my body, but rather a lack of habit and a preoccupation with something else. I find that I am often slightly dehydrated when there is a source of water nearby me. In my mind, there is somewhat of a procrastination towards staying hydrated: “I will just get some later.” And this is fueled by how easy it is for me to access drinking water. The availability of water often circumvents my hydration levels, and causes water to be low on my immediate list of priorities on a given day.

Just to clarify, I am almost never dangerously dehydrated. Many of the instances that I have referenced above are cases of mild dehydration, not anything life threatening. However, it is still imperative as someone with Moyamoya to keep hydrated. One easy way for me to tell if I am hydrated is urine color. The darker and more yellow my urine is, the less hydrated I am. That, and thirst levels, are last resorts for me in terms of staying hydrated. For me, it is ideal if I do not have to rely on these signs of dehydration and be proactive in drinking water instead.

Although I am not necessarily the model, hydrated person, I have been striving to stay hydrated recently and want to share some quick, easy tips:

  • As mentioned before, keep a BPA-free water bottle on person throughout the day, and on trips
  • If you notice any of the tell-tale signs of dehydration, (see https://medlineplus.gov/dehydration.html) drink water immediately
  • Stay away from sugary, caffeinated beverages as they are not as hydrating as water
  • Stay away from salty, high-sodium snacks
  • Remember to drink water after exercising, especially when the weather is hot.