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  • Writer's pictureCharlene Holkenbrink-Monk

I Was Korean Until the 2nd Grade, and Again When I Had a Cerebral Pseudoaneurysm

This entry is about my identity as a white, Korean neurodivergent woman. Part of this identity also encompasses my connection to my Korean ethnicity due to my predisposition to brain aneurysms, traced back to my grandmother. These are very intricately connected and intertwined, and something that I share about here, especially as it relates to our family's inheritance of a rare disease called Moyamoya.


I've said this before; this was the opening line of my application for my Ph.D. program and will be the title of my first (or maybe, second) book. The reason behind this is due to a second-grade experience, which you can find more about in a previous piece I wrote about regarding my dissertation: Using Han, Finding Jeong.


Identity is an interesting concept within the context of our socially constructed world, in that it is created by our conditions, yet, it has very real sociopolitical implications. I recognize my positionality in this sense - I present as white, and I will not face the same experiences as say, my mother did as a child, and especially not my grandmother. I also see the ways that I am a product of U.S. Imperialism, but also simultaneously occupation. Yet, I often struggle with speaking about my identity, my struggles, and my experiences, so this post is the start of that in hopes that I will have the pieces scattered and for you to understand why and who I am for folks to see once it's time to search for a publisher for my book. And, admittedly, this is part of my healing journey, but also to reflect on the complexities of life, on how we find ourselves situated within our social world, and how these things influence the way we engage and navigate the world.



My grandparents in the 1950s (mid to late.)


My grandparents met during the Korean War in the 1950s. Unfortunately, my grandparents died before I could ever ask them questions; my grandfather due to cancer, and my grandmother from a ruptured brain aneurysm, something that is very relevant to my story and experience. But, I'll get to that another time. My grandmother was from Busan, Korea, which also overlaps with the presumed time my grandparents met, and with when Busan was the temporary capital. My grandparents were unable to be married and had my uncle several years later in the late 50s. There are some fuzzy parts of the story I'm not sure about, alas, here we are, here I am.


My mom struggled with her experience growing up, and the reality is that my grandmother, to give her 5 children their best lives, chose not to teach them Korean. There was a substantial language divide, but my mom recalls being the one to communicate between her and other people since she could understand her. My mom visited Korea with her mom when she was 12, and still speaks about it fondly. (I hope to take my mom back for her 60th birthday to Korea, due to the importance of hwangap.) My grandmother died 4 years before I was born, but my mom kept much of her Korean identity intact and was able to pass that to me. I remember steamed rice, kimchi, and beef bulgogi being a comfort food for me, clothing in the closet, pictures of my grandmother, and memories shared with me. These moments were important to me, especially because of my difficult childhood which didn't often foster an environment to have these conversations, but when they were explored, they were heavy, and I'll discuss that in another post. I remember staring in the mirror at times, trying to find traces of my grandma on my face, comparing my eye shape, my nose, my lips, my cheeks to my mom's. I knew I was Korean, but even at a young age, it was evident that there was something different. I also feel very closely tied with my dad's family, but that's a story for another day, though you can learn a little about the connections here, in a piece I wrote entitled, Finding Joy.


When, in the 2nd grade, my teacher told me that I could not advance to the next level of mathematics because "Asians are smarter" I was crushed, and even then knew there was something very strong with this statement. My mother expressed her frustrations and anger about this issue to my teacher, and unfortunately, though not coincidentally, the teacher missed the point; several weeks later, my two Asian classmates of mine, and myself, all were selected to do the gifted and talented testing (GATE.) This impacted the trajectory of my educational journey and has influenced my experience as a teacher and educator, and the choices I make in choice for materials, course development, and more.


Fast forward years later, and in high school I had friends I sat with who insisted I should embrace my Korean identity. They were Asian as well, one being Korean, and they told me that I should not reject it. I did not - I felt, instead, rejected. I grappled with this throughout my undergrad years. Aside from the occasional, "What are you?" questions I'd receive when working at Starbucks in the middle of Beverly Hills and West Hollywood, where the response would sometimes be a variation of, "Oh I could tell there was something different about you, just not fully white," I knew I was white, but how could I explain this deep connection to my Korean identity, too?


My grandmother, Bok, and my mother, Rachel, in Korea c. 1978


It was eventually in a sociology class later (and after my time at UCLA) with an instructor who had a background in ethnic studies where I was able to finally articulate how I identified, in ways that addressed my privilege without minimizing my identity. How, racially, I present as white, but that does not mean that ethnically and culturally I had to deny my Korean identity. Han coursed through my body. Generational trauma was evident. But, jeong was clear too. My passion for at a young age for equity, my anger at injustices, and standing up for friends - were just there passed from generation to generation.


I've felt this "Koreanness" throughout my life, and finally was able to recognize the way that it presents culturally and within my heart, while also how it has manifested quite literally in my brain as well. The concept of epigenetics is not missed on me, where environment and lifestyles can impact your genetics, and is likely how our family was impacted in the way it was. My grandmother died in 1984 from a ruptured brain aneurysm. She had symptoms leading up to it, likely dismissed as psychiatric concerns. Nonetheless, it was there and resulted in the loss of her life. When I was in middle school, my uncle suffered a subdural hematoma, though he fortunately survived (and later had a brain aneurysm.) My aunt has Moyamoya, which presented as several strokes, and this prompted my mom's insistence to be scanned. Lo and behold, she also had an aneurysm and had hers coiled. I was in high school when this occurred, so I was monitored often.


In 2015, I had a series of scares. I started having a deep discomfort that hovered on the cusp of pain in my neck. Every blood test said it was not a stroke. I went to my primary who dismissed me. Despite having seen a neurologist since 2004 at the age of 16, this primary doctor explained I merely needed to keep a diary and this was likely due to my migraines. I told her no, yet she refused to refer me to one. By November, the pain had not subsided. I was in my second to last semester in my MA program with a 1-year-old and a 3-year-old at home, struggling with what to do next in my education, and battling severe anxiety at this point. What if I die?


In May 2016, several days before I was supposed to walk in my graduation ceremony (though I had a thesis to finish during summer - every intention to do so and had all of the foundation to do so) I went to the emergency room- I had a migraine that was so vastly different from the ones I had been experiencing since the age of 4, that I knew I had to go. I sat there for hours and started feeling better so I tried to convince my mother to leave. She said no, saying, "We've been here for 4 hours, we're not leaving now." Irritated, but knowing she was right, I sat there. And I sat. And I sat longer.


"Charlene Holkenbrink-Monk?"


Finally, I got up, grabbed my items, and went to the back, my mom in tow. The resident who saw me assured me, "It's likely just another complex migraine." I explained, "I have never been to the emergency room in the 24 years I have had migraines. There is something different." She continued to tell me it was just a migraine, but that she would see what she could get her attending to agree to, coming back with a migraine medication cocktail, which did work wonders. However, I explained repeatedly something needed to be checked and I pointed to my neck.


She finally returns, saying, "The attending says it's likely just a migraine, but we'll do the scan anyway." So, off I went to receive the first CAT scan I had ever received as my scans were always MRIs before that. After the scan, I returned to the hallway, shivering from the cold, and looking around at the chaos that ensued in the emergency room. I did have some compassion of course - they were overworked and overcrowded. It was in Central San Diego. The resident was learning. It was complicated. Yet, my life was in their hands. So, I sighed some relief when the resident returned to tell me that I was cleared.


"Your scans are clear! It's just a complex migraine," she said as she handed me my discharge papers. Starving, my mom drove me to get food - it was around 1:00 am. My poor, sweet son was terrified, anxious, and still awake waiting for me, his sweet little 4-year-old heart worrying for his mom. After consoling him, I showered and three days prior I had purchased a shower speaker. At approximately 2:00 am, my speaker begins to ring, alerting me to a phone call. Who could that be? It must be my mom. 


I answered and it was muffled - the shower running, soap in my hair and on my hands, I could hardly hear the person on the other line.


"Hi, this is ____ from UCSD. Is this Charlene?" I shut the water off.

"Hello? Yes, this is Charlene.."

"Hi, yes, this is Dr. _____. I am so sorry to be calling, but I need to let you know that we need you to return to the emergency room. I'm not sure what happened, but the doctor found an abnormality on your scan. We need you to return to do more tests."


My heart sank. I almost threw up. Holding back the tears that were welling up in my eyes, holding them in what felt like my throat, I hung up the phone. Uncertain of what would happen next, I kissed my sweet babies, now both asleep and left once my mom arrived. In tears on the way, my mom tried to remain calm for me. We parked, I walked into the emergency room, and because of the conversation, they were able to get me back into space quickly. Come to find out, the resident had read my papers and had taken it upon herself to discharge me, sure of the fact that I was merely having a "complex migraine." Once the radiologist and the attending had reviewed it, they knew that there was something significant that had been missed: an entire cerebral pseudoaneurysm. Fuck.

They conducted an MRI, prescribed me medication, and urgently referred me to a neurosurgeon. In May 2016, several days later, I walked in my graduation ceremony with a pounding migraine, and you can see in most of my photos I was wincing in pain. The pain was emotional, too. I was terrified I was going to die. The pressure in my internal carotid artery would become too much, I'd have a stroke at the age of 28, and my children would be left without a mother. So why the hell am I walking? This means nothing. I had to postpone my thesis, resulting in finishing a comp exam instead, and proceeded to have a stent placed in my artery. When I did this, I walked to the hospital. They told me initially it would be an outpatient procedure, so I packed light. But then, when I checked in they told me that no, it would be inpatient.


"Why?"

The doctor responded, "You're having brain surgery."


This was the first night I was away from my children and I'd had no time to prepare them emotionally. I hadn't had time myself. So, I was handed my gown, dressed down, and then wheeled into the procedure room.


I lay on the cushioned table in a cold room. An entire team hovered around. My neurosurgeon held my hand as he watched me tear up and cry, assuring me he would take care of me through this angiogram procedure. I lay awake as they entered my body through the femoral artery. I watched the screen, seeing this wire travel through the artery and different sections of my body. Privileged in many ways to be able to have this occur, and to have caught this before an event occurred unlike my grandmother, the fear was rushing through my body much faster than the contrast through my veins. As soon as the stent was placed a release happened and my entire side tingled and felt warm. I spoke up and they explained this was normal, and it was - things normalized shortly after. I went to the recovery room where I had to lay flat for 3 hours without moving, turning, or rotating. This was simple compared to my aunt and mom who had to lay still for 8 hours. This was due to the femoral artery where they entered; I had something called an angio-seal placed that prevented the artery from hemorrhaging. Admitted at his point, I had a horrible headache. When I explained the headache, the doctor simply said, "Well, yeah, you just had brain surgery."


Oh.


The next day, I left, finally able to see my sweet family again. My children climbed all over me, careful of my insertion point, but ensuring they gave me as much love as possible. The next several months were a blur, aside from genetic testing that confirmed I do, have the gene for Moyamoya and that it has caused me a predisposition to aneurysms. Moyamoya does not only impact one group of people but there is a prevalent cause of Moyamoya that is most commonly found in only Korean and Japanese-descended individuals: RNF213. Our family so far does have another gene, but the genetic counselor rejected the request for the 2nd one, citing it as not being significant, yet so little is known about the genetic component and Moyamoya itself, that now, 7 years later, I need to be retested for it and my children, though not having RNF213, will need to be rested for the other one.

So, over the last few years, there have been a lot of reconciling I have had to make within my identity and the complexities. This stent in my brain is the direct connection to my Korean ethnicity and family heritage, and likely relational at least to the occupation of Korea, too, to some degree anyway. It has impacted how I parent, how I engage with my children, the decisions I make in life, and while I present as white, my cultural and ethnic Korean background, coupled with the generational trauma, is very present within my lived experience, too. There is no denying that.


Picture of my mom, kids, and me Summer 2023 in Arches National Park, Utah


But, through the years I have had the benefit of figuring this out, making peace with this complexity, but also learning to advocate for myself. Having been dismissed multiple times, I use this sense of han, this anger and frustration, to advocate for others, for myself, and to hold on tight to my identity. And the reality is that education can tear people apart, and this has informed my approaches as a teacher, too. But, this is also part of my journey, and something I'm trying to share with others. These institutions and systems have areas that need to change by seeing these complexities – my “Koreanness” also is present, having been passed down several generations, both through medical and social trauma. This is evident in our family, and most families and people have their own set of traumas, but in this instance, I wanted to share mine in hopes that this can help encourage others to advocate for themselves in education, the medical system, and in their quest to make sense of themselves and the world, together, interconnected, and intertwined.  

 

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