On December 7th, 2011, my family woke up before dawn and began getting ready to step out into the darkness. My father, my mother, and I rode in relative silence on the 30 minute drive to Baltimore from our house. Usually, there is traffic, but so early in the morning, there were barely any cars on the road. As we exchanged light beams, we all stole glances through the windows at each other’s passengers: “I wonder where they’re going at 5AM in the morning?”
Where was I going? At 9AM sharp, they were going to wheel me into the operating room, open up my skull, and operate on my brain. As my classmates were deep in their sleep back in our college dorms, I was being driven to Johns Hopkins Hospital to have brain surgery. That’s where I was headed at 5AM on a chilly winter Wednesday.
Half a year earlier, I had just turned 22, and was to be an incoming senior at a state university. I was recently admitted to the graduate program to finish off my bachelor’s and master’s degrees in special education. I was going to be a special education teacher; something I had dreamed of – and prepared for – since I was very young. Then, a month after I turned 22, I was diagnosed with a harrowing disease: Cerebral Arteriovenous Malformation.
It’s a mouthful, that name. Like having toffee in your mouth, slowly gluing your jaw closed as you desperately try to avoid biting your tongue. Thank goodness for the much less cumbersome acronym: AVM.
AVM is a vascular disorder, where blood vessels create a “tumor” of blood vessels. These tangled and overgrown blood vessels look like a sparrow’s nest instead of the typical arteries-to-capillaries-to-veins pattern in healthy blood vessels. This can occur in any part of the body, from the skin to organs to legs – basically anywhere with blood vessels.
In my case, it grew in my brain. More specifically, in my left frontal lobe of the brain. And there it sat, pressing down on my brain, causing seizures, migraines, and potentially – and if left alone perhaps fatally – a stroke. It sat silently for years, growing its influence over my body until one day, I had my first grand mal seizure.
When we arrived at the hospital, it was eerily quiet. We were the only people making our way through the usually bustling hallways, and every step seemed to echo. All three of us were calm; almost unnaturally so. I was walking to my potential death or permanent disability. My parents were about to offer their daughter’s life up to the mercy of the doctors and wills of fate.
This may have been the last few hours I had with my parents as “Me.” There was no guarantee that I would wake up as the person I was before the surgery. And yet, we were all quietly making our way deeper into the hospital, making small talk.
My personality could change, I could have memory loss, I could lose many different skills including language, reading, or mobility. Without my memories or my personalities, would I still really be Me? In the weeks leading up to the surgery, I had this thought often: What makes Me, Me? What can I lose and still be Me? Am I my memories? Am I my personality? Am I my passions? Am I my sense of humor? At what point, am I… not Me?
My neurosurgeon told me that the surgery has 75% chance of success. “Success” included any situation where I didn’t have a stroke or die. “What about personality change?” I asked him few months earlier, as he did a check up. “Is that considered a failure?”
“No,” he told me. “That would be considered a success because you didn’t have a stroke.”
Throughout my journey, I had begun to realize how little modern medicine valued the “soul” or the “being” inside. It seemed very much preoccupied with the physical organ that is the brain, but not the actual “being” that lived inside it. It didn’t matter how I felt or what I valued as a quality of life indicator. As long as the physical organ was intact or not having seizures – those were the important things.
And the understanding lead to very conflicting feelings about the value of my “being” and “self” – something so intangible, and yet possibly the most important part of that space between my ears.
Growing up, adults repeatedly told me that, “College is going to be the best years of your life!” While my cohorts went to parties, spent late nights with friends, and took impromptu trips, I sat in my apartment, wondering if I will wake up the next morning. Those few moments as I closed my eyes and began slipping into sleep, hoping that if it were my last, that I haven’t left any regrets unfulfilled, friendships unrepaired. I had cleared out many of my digital artifacts and written a living will. Not that there was much to leave (I was only 22, after all), but for my end-of-life care, if I were to fall into a coma or can no longer make decisions on my own.
Everything from a small flower growing out of a crack of asphalt to watching a field of cattails swaying gently in the wind brought me to tears, and I found myself stopping frequently in my labored walks to and around campus to admire things I’d never noticed before.
After a while, with the combination of seizure medications increased after every break-through seizure and my body’s deterioration, even walking to class became a struggle as I fought off extreme fatigue and vertigo with every step. When I had my third grand mal seizure in half a year, I knew I had to halt my attempt to finish out the semester. I called up my neurosurgeon’s office, and we moved up my surgery date by a few weeks. Instead of having my surgery around Christmas, I was having it the first week of December.
My parents and I sat in the waiting room quietly, watching the clock. My mom held my hand, and I went through a feeling of dissociation from the situation. It all seemed so unreal – that I was sitting in the waiting room of a hospital, about to spend the next half a day under the knife, and it was to be one of the most pivotal moments in my life. Sound seemed to recede, and time slow.
That Schrödinger’s Cat of the medical variety: When I wake up (if I wake up), my life will be forever changed.
Would it be for better or for worse? If we stopped time now, we can prevent it from happening, and we can maintain the status quo. We can still walk out, for the next 30 minutes. But we sat there, watching the clock on the wall tick away the minutes, then seconds, until we gave up the ability to change our minds.
Finally, I was ushered into a waiting room, where I removed my clothes and changed into the flattering hospital gowns where you tie two sheets of cloth together with a few strings, which were always way too big for me.
A few nurses wheeled in a hospital bed, and with a last hug, I was taken to the OR, leaving my parents behind. The room was lit up to the extreme, and I could barely see past the blur of colorful scrubs and masked faces. Needles were inserted, a mask placed on my face. I was told to relax, and someone told a joke I’ve since long forgotten. As I laughed, I breathed in the gas and slowly floated away.
My father, I believe, went to work (can you imagine?). My mother stayed hospital cafeteria, clutching her duffel bag filled with my clothes and change of her own clothes and toiletries in case she needed them. After a while, her friends came to sit with her and keep her company. They ended up staying with her for over 7 hours, as my procedure took almost double the estimated time.
When they cut my brain open, they realized that I had three, not one, AVMs. The surgery was elongated in order to make sure they got everything out, because as with other “tumors,” leaving any part could lead to it growing back, or causing any of the number of health issues associated with AVMs including seizures and strokes.
Perhaps due to the unexpected extension of surgery, I woke up momentarily on the operating table. I could see the brightness of the room through my closed eyelids, and hear the bustles of the machines and surgical team around me as they operated on my brain. But I couldn’t move, couldn’t open my eyes, or scream to let them know I’m “there.” Being drugged though, I fell slowly back into a deep sleep few minutes later.
I can’t even begin to imagine what must have been going through my parents’ heads as they waited for news, and the delay stretched for hours. Once the surgery was completed, they wheeled me into the ICU to spend the night and monitor.
Few minutes later, they brought my mother in, and she watched in wonder as I responded to the doctor’s questions in English, and noticing her, spoke to her in Japanese. That’s the moment, she told me later, that she knew I was going to be ok. (Losing a complete language is a risk when operating on the brain, as languages seem to be “stored” in different parts of the brain for multi-lingual individuals.)
Because I was vomiting blood and required intensive observation, they allowed my mother to stay in the ICU with me overnight, bringing in a couch for her to rest on. From then on, until I was discharged 4 days later, she did not leave my side.
And yes – you read that correctly – they discharged me 4 days later. My surgery took all day of Wednesday. I was moved to ICU Wednesday night. Thursday, once they established I’d stabilized enough, they moved me to the neuro-ward in the hospital. By Friday evening, they were telling me they wanted to discharge me on Saturday morning because they “need the bed for another patient.” My neurosurgeon intervened, and my discharge was moved to Sunday morning.
So I effectively spent 4 nights in the hospital for brain surgery. And of course, I couldn’t do anything other than move my fingers (which also took a few days). I couldn’t walk or even go to the bathroom, and my legs were being painfully massaged by a machine 24/7 to prevent blood clots. But there I was, being discharged. At least they took me out to the car on a wheelchair!
Despite the unexpected discovery of three AVMs instead of one during the surgery, I did not have a seizure nor a stroke during the 7 hours long procedure. I was told to come back two weeks later to get my staples removed.
No one had anticipated the grueling trial that is brain surgery recovery. We were not prepared at all for what was to come. But at the very least, I can honestly say that it changed my life, and in very significant ways. I would not be here now, doing what I do, with the life outlook, had it not been for this very pivotal 7 hours and the half year leading up to it. I learned quite a lot about myself, on living, and fragility of life during this time, and continue to do so even now.
I was blessed with a “second life,” and my only hope is that I can contribute something to the world that could repay the societal “debt” such an opportunity means.
21 thoughts on “On Facing Death, 7 Years Later”
I’m so glad you made it through as well as you did, Hiro. I have read a lot about AVMs because of reasons and I know there were so many possible scary outcomes. It’s good to have you here with us.
Hiro, your story is very inspiring. I’m one of the moderators of the “Brain Aneurysm Survivors” group on facebook and am a survivor of brain aneurysms myself. You might want to join us too. It’s a really wonderful group.
So incredible to think about where you’re at today compared to seven years ago. I can’t even imagine what your mom must have been feeling either. The idea of waiting for your kid to go through that proces…
Love you, friend. Sure glad things have turned out for you as well as they have (even if you’re dealing with a whole bunch more crap now).
Such an inspirational story! No just what you went through but how you took your experiences and transformed them as a way to give back.
Can’t imagine going through it, but I know from experience we’re all capable of things we can’t imagine, when put in those situations.
This is a very inspiring story, Hiro! It must have been scary to think all about the risks and the possible consequences of this surgery but you were so brave to have gone through all of this. Props to your neurosurgeon too for helping you get through!
I’m so glad that you recovered well and achieved so much since your recovery. I also love how you’re paying it forward through being a disability advocate. It’s a great way to use your experiences and your knowledge to give back <3
What an amazing story. I’m so glad everything turned out successfully for you.
Your story is so inspiring! Everything that you have been through leading up to the surgery, the surgery itself and then the recovery period. The uncertaintly and pain. I just can’t imagine. My heart dropped when you mentioned you woke up on the table. How scary!
You continue to inspire me, I read about your journey with your Rheumatiod Arthritis diagnosis. The fact that it takes 1-3 years for a diagnosis for most people doesn’t surprise me. Pain is hard enough to deal with but being told your making it up for attention really annoys me so much. I’ve heard the same thing over and over again and after a while I started to believe it. I’m glad you got a diagnosis and hope that (I noticed the post was from a little over a year ago) the medication is working.
I can’t say this enough Hiro, but you inspire me SO much. Thank you for sharing your story and constantly, being a positive advocate for AVM – you’ve gotten so far and truly kicking butt no matter what. You are so strong and I am soo proud that I know you – hugs irl SOON!
That is SUCH an incredible story. And your mother was so amazing for never leaving your side through it!
I totally understand about escaping death but I’m glad you made it.
This made me want to cry. I can’t imagine going through this…
But you did and you survived it. And you continue to go on, despite challenges. It makes me realize I take stuff for granted and should be more grateful. You’re truly an inspiration.
I’m sorry you had to go through all that though. *hugs*
What a blessing you are to all that have the opportunity to read about such strength, courage, and giving back. You are a true gift from God and may He continue to cover you on your journey.
Hiro, what an incredible story. Thank you for sharing. Your writing is beautiful and captivating, and I look forward to reading more of your blog.
Thanks so much for sharing your incredible story, Hiro. I can think of few more frightening experiences at an age of maximum potential.
Not to speak on behalf of the medical community at large, but I’m so sorry you felt that the medical system’s emphasis on physical recovery disregarded your whole being.
I can tell you most docs I know care a great deal about their patients’ souls.
We just haven’t found a great metric to measure how those souls recover from illness, so we don’t have statistics for odds of waking up whole versus broken, grateful versus resentful, or inspired versus deflated.
As a result, we end up with lame or uncertain answers to those most important questions.
Thanks for allowing us to share in your victories,