The Biggest Change

I have wrapped up my first semester at Harvard, and I can safely say that it has been one of the most tumultuous, exhausting, overwhelming, and draining few months I can remember. However, it was also the most rewarding, exciting, transformative, and fun.

The lessons I have learned, both in and outside of the classroom, are innumerable, and I truly believe that I have gained so much from both my peers and my professors.

It is safe to say that I was more than just a little nervous heading into this completely new atmosphere, filled with different people, places, expectations, and possibilities than I had become used to in my 13 years at the same school in New York.

The rush to make friends, learn how to navigate campus, choose classes, and figure out an entirely novel living situation left very little time to sit back and realize how blessed I am to have received this opportunity. Almost nowhere in my thoughts was the important and always relevant fact that I am lucky just to be able to walk around. This ignorance, although shortsighted, is actually indicative of how well things are going for me. It’s a privilege to be able to occasionally forget about Moyamoya, and experience a “normal” college experience.

I don’t want to give off the wrong impression about my college experience thus far. Moyamoya has certainly played an important role in this transition in my life, especially because I am no longer surrounded by people who had known me well enough to know that my scars aren’t simply an odd hairstyle choice. Every time that I enter a new space with new people, I find myself eventually doing the obligatory “Oh yeah, these are actually scars from when I had brain surgery in second grade.” Harvard was no exception.

But this is also something that I have grown and learned a lot from, even in the first few months of Harvard. Rather early on in my friendships I explained the scars on my head, and what my experience with Moyamoya has been like. This is not really something that I would have done in the past, as many of my friends from home have some vague idea of what Moyamoya is but haven’t really ever heard the whole story. The experience of telling people that I had gotten close to, but weren’t quite that close with yet was really freeing and also has strengthened my bonds with those people. Sharing my story and what I have struggled with is a vulnerable step, but a crucial and powerful step in creating lasting and meaningful friendships, and that is something that I have learned firsthand this past semester.

Also, because of how hectic everything has been, it has not been so easy to keep track of my health and prioritize that. My sleep schedule has admittedly suffered, and sometimes I have let myself get a bit too stressed out. But there are also certain measures that I made sure that I incorporated in college, and these have gone a long way.

My blue Nalgene water bottle has been a constant in my life so far at Harvard. Before college, I had used water bottles in the past, but never to the 24/7 extent to which I relied upon that trusty Nalgene. I am constantly on the go, and it’s incredibly helpful to have water with me as I go all across campus. Often, it can be difficult to rely simply upon water fountains, as they don’t really prevent dehydration as sustainably as water bottles, and also they can sometimes be few and far between.

Another habit that I have incorporated into my life has been healthier eating. I find myself eating a lot more greens, chicken, and fruits than I had going into college, and this has been a conscious choice. I tend to feel better after a meal like that than after something much less healthy but also tastier, and I was never really a picky eater in the first place.

I am really excited to see what this next semester has in store for me, and know that whatever happens, I am nothing but lucky. I have been given this opportunity to make the most of my life–what can perhaps be seen as “borrowed time”–and I plan on doing just that.

Moving on to College

In the following weeks, I will experience one of the most momentous changes of my life: going to college.

I have lived in the same place my entire life, and gone to the same school from Kindergarten through Senior year. Although there have undoubtedly been many aspects of my life that have changed throughout the past 18 years, where I live, the people I surround myself with, and my lifestyle has been largely static.

Since high school ended, I have had little on my mind other than this new chapter of my life. There are so many things to think about, and so many questions that are yet to be answered. I wonder about the people that I will meet, the classes that I will take, and generally what life will really be like in college.

This fall I will be attending Harvard, which is something that I am incredibly grateful to be able to say. Looking back at the experiences that led me to this point, it is all too easy to pat myself on the back or attribute too much credit to myself. Everything that I was able to accomplish or work towards the past several years would have been rendered impossible without the hard work and skill of the many doctors and nurses that helped me through my diagnosis and surgeries. Without the many, many factors that led to my successful surgeries and recovery, college would not even be on the table. The doubts, worries, and excitement that have defined this summer for me are trivial when put into perspective, and I have come to realize that I viewed college with a far too “normal” lens.

What I mean by this is that my thoughts revolving around college were the exact same as those of my peers. The typical questions of “am I going to like my roommates?” or “how will the classes be?” dominated my college-related thoughts, and I rarely considered what it took for me to get here in the first place. Something that I often ponder is what kind of person I will be at Harvard. What will I do? Who will my friends be? Where will I spend my time? This is something that my friends and I discuss at some length, although it is mostly excited and nervous speculation. While this focus on the future is certainly valuable and makes sense, it has led me to lose sight of my past. It is honestly a bit absurd that I have managed to forget about my Moyamoya disease in the context of college. I was only reminded of it when filling out the requisite medical forms and at a check-up MRI I had a few weeks ago. Getting the MRI with the IV was a bit of a shock to my mindset, as it was one of the only times I had been so vividly confronted with what was my reality for several weeks in 2008. However, I put that experience behind be pretty quickly, and promptly resumed my day.

The fact that Moyamoya disease has been pretty absent from most of my pre-college thoughts can be understood rather simply. Primarily, it reflects how lucky I am to have suffered no serious complications post-op. In a sense, the relatively seamless path that my diagnosis and surgeries have taken allowed for me to live a life largely unburdened by Moyamoya disease. Other than the daily dose of baby aspirin that I take, there is little in my day-to-day routine that reminds me of having Moyamoya.

That being said, this new change in my life will force me to become more independent and responsible when it comes to taking care of myself. I will no longer have the safety net of my parents, and cannot always rely on them to keep healthy and stay on top of things. I know that I am up for the challenge, and have already thought about certain measures that can be taken in order to ensure that I can be healthy. Carrying a water bottle around with me throughout the day will be vital in order to stay hydrated, and I plan on keeping in contact with student health services and my proctor in regards to migraines or any other issues that may come up.

I am grateful for how infrequently I have to think about Moyamoya disease, and for not only the chance to worry about college like a “normal” kid, but also the chance to even attend college in the first place.

 

Halloween

 

Today, like many of the Halloweens I have had over the past decade of my life, reminded me of my surgeries. I had my surgeries done at Lucile Packard Children’s Hospital at Stanford during the fall, and by the time I was in recovery from the operations, Halloween was rolling around. This was three days after my second and final surgery. As a seven year old, I was naturally sad to be missing out on the usual trick-or-treating and festivities. However, the hospital went all out in an incredibly generous and thoughtful Halloween-themed event that night. Costumes were donated to the hospital, and everyone was able to dress up. Staff members dressed up and played along, offering us candy as we traveled floor to floor. All in all, this ended up being one of the most fun Halloween events I remember.

It was the little details, the sheer effort that the hospital put forth to give me and the other patients a great time, that made the difference. As I had two fresh scars on the sides of my head, a mask was out of the question for a costume. However, I wanted to be a Stormtrooper, and the hospital had a makeup artist there just in case. The costume I got came with a Stormtrooper mask, and in replacement for that mask I was able to have the pattern painted on my face. This alone meant a lot, as the hospital did not want me to feel as though my scars prevented me from enjoying myself and dressing up. There was also a tremendous amount of work put into transforming the hospital, with each floor having a distinct theme and many staff members dressed up and participating. I remember there being a pirate floor, a sports floor, a “where’s Waldo” floor, and a Disney Princess floor — it felt like each floor was a different world. I was even given orange wrap around my IV as to invoke the Halloween spirit in covering up the reminders that I was there to have brain surgery.

As I walked around today and saw people in elaborate and thought-out costumes, I marveled at how much work it must have taken to organize this Halloween event at Lucile Packard. Not only this, but all that work was done for only one afternoon before it had to be restored to continue functioning as a children’s hospital. I also think about how easily an event like this could have been done halfheartedly, without any attention to detail or emotional investment on the part of the staff participating. Everyone was so nice, outgoing, and into it.

What really made this experience awesome is that it gave me the gift, the illusion, of being a normal kid again. No longer was I at a hospital, thousands of miles away from my home; I was just a kid, infatuated by large piles of candy, having a blast. None of what Lucile Packard did was necessary; however, it meant the world to me, my parents, and I’m sure all of the other kids there.

 

 

 

 

 

 

 

 

 

 

College

As of the writing of this post, I am in the midst of the college application process. I am a senior in high school, and the daunting prospect of applying to colleges is now a reality. I think I speak for the majority of my peers when I say that this has been — and I’m sure will continue to be — a particularly stressful, jam-packed, hectic period of time. Trying to balance sports, extracurriculars, schoolwork, and the college process can feel at times like a Sisyphean task, not to mention remembering to spend time with friends and maintain good mental health. Needless to say, there have been many things on my mind for the past few weeks, but in pondering my future and what it holds one thing stands out.

Even in the unlikely event that I attend a school in close proximity to my house, I will still be living on my own. The drastic increase in freedom and independence that I will have to come to grips with in college poses interesting questions in terms of living with Moyamoya. Realistically, college will be the start of a new life for me, one without the constant support and guidance of my parents and family. This excites me, as I am someone who likes to be independent and figure out my surroundings. However, moving out of where I have lived for the past 18 or so years is an inevitably scary thing to do. Over the years, I have spent days or sometimes weeks away from my home and parents, so I have had experience with staying responsible in regards to dealing with my Moyamoya. On these short excursions, the only things that I have really had to remember to do is take my aspirin and stay hydrated. Living on my own for four years, however, is a totally different scenario. Luckily, I have not had to deal with many issues post-operations, yet moving out of the house is still unfamiliar territory that I will have to be able to deal with.

Ultimately, I think that I will need to develop a more careful and vigilant mindset. No longer will I have the safety net of being a room away from my parents, and no longer will I have the constant reminder to stay hydrated. I know from personal experience that it can be easy to forget daily tasks such as taking my aspirin, especially when in a new, exciting environment. In addition, establishing and maintaining healthy habits will be key for me going forward, not just at college, but in life. Making sure I carry around a water bottle, no matter what I am doing, is probably going to be a good start. Putting my bottle of aspirin near my bed, which I started doing recently to remind myself to take one before going to sleep, will be something I hope to continue. Another potential issue I have thought a lot about recently is sleep. I am scared that I will not get enough sleep in college, and the that migraines that I get from repeated lack of sleep will make many an appearance. I imagine that managing the prospect of a migraine could be difficult, especially when considering the horror stories that I have heard about all nighters and whatnot.

There is also the slightly more pressing issue of making sure that I keep healthy habits up during the college application process. Realistically, the first semester of Senior year is the most difficult and stress inducing. After January, there will be far less on my plate. When it comes to managing all of the work and deadlines — not to mention all of the other aspects of a healthy teenage life — I think the most important tool is time management. This is something that I struggle with, and hope to improve over time. Clearly, with the structure of college allowing for much more free time, while also much more work, than in high school, time management is not a high school specific skill.

As I ponder some of the realities which I must face in the coming years, something that really grounds me is the knowledge that I am completely and utterly lucky to be in this position. My personality, merit, or accomplishments are not the reasons I am here right now. The miraculous diagnosis — following several misdiagnoses by some of New York’s leading doctors — and operation that I had allow me the privilege of taking part of this college process. While it is easy and tempting to view the seemingly endless essays and deadlines as a drag, my unique perspective as a Moyamoya survivor has rendered this work as a gift.

 

 

Normalcy

Everyone is unique, different than their peers in some shape or form. For many, these differences come about through intangible attributes: a particular skill, taste in music, perspective on life, occupation, etc. For many others, a defining trait or physical feature renders them “different” or outside of the norm. In my case, since the Second Grade, there have been clearly visible, approximately three inch scars on both sides of my head. There are other ways I could define myself in order to appear different, yet having Moyamoya seems to be one of the most physically apparent and relevant facts about me. I do not interact with anyone on a daily, even monthly basis with the scars I have, and do not know anyone who has Moyamoya on a strong, personal level. In this sense, I am not normal.

Aside from its obviously dangerous health aspects, one of the most devastating parts of having a rare disease such as Moyamoya is the feeling of isolation. It is remarkably difficult to go through the process of diagnosis and treatment without knowing anyone — or in some cases, not even knowing of anyone — that has had similar experiences. Simply lacking an example of everything turning out fine has a crushing, demoralizing effect.

This is why Stanford Moyamoya Center’s Annual Picnic, which occurred in late June, is so important. As I walked through the crowd of people gathered in Mitchell Park in Palo Alto, I felt what can only be described as a kind of high — a state of prolonged, increased contentment. In the weeks after the event, upon further reflection, I discovered that what I felt that day was a sense of belonging, of finally being a part of the norm. Everywhere I looked I saw scars that resembled those of my own. Thinking back to countless times that my head looked different in a cap to those I saw everywhere around me on the baseball field, it seemed surreal that only a minority of the people at that park did not bear scars on their heads.

It may seem to be a small, trivial similarity, and there were certainly other differences throughout the group, but it meant the world to me. One might think that, over the years, I have gotten used to being the only one in a crowd with these scars, and I suppose, in some senses, I have. However, it is always something that I am aware of, if only in the back of my head. There was a palpable sense of relief at that picnic for me, a relief in not only being able to avoid the typical questions — “Is that a hairstyle?”, “What happened to your head?” — but simply in the ability to briefly relax and let go of the small anxiety I often harbor about my scars. The picnic had a great turnout, and was tremendously successful. Dr. Steinberg himself was there, walking around and talking to people. So were Moyamoya survivors/patients from all across the country. The importance of the picnic, and gathering together people from all different walks of life yet united by a common struggle cannot be understated.

The feeling of community that was abundant during the picnic provided the reminder that none of us are alone as a Moyamoya survivors.

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.

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.