With my diagnosis of harboring “ticking time bombs” in my brain at the age of 22, technically, little had changed. And yet, somehow, everything had changed.
I was diagnosed with a vascular disorder in my brain a month after my 22nd birthday. After a Grand Mal Seizure which sent me to the Emergency Room, a scan was done of my brain, and the ER doctor pulled my father and me aside.
In a solemn tone, he announced, “I am afraid there is something wrong with your daughter’s brain. It seems as though she may have Encephalomalacia- don’t look it up,” and sent us on our way with a prescription of seizure suppressants and a name of a neurologist. (Of course, I looked it up. And naturally, Wikipedia was not reassuring at all. I’ll give you a hint: every notable person who had that disease is dead.)
After half a dozen different types of brain scans and three months, we were finally given a diagnosis: Cerebral Arteriovenous Malformation in the Left Frontal Lobe.
Arteriovenous Malformation is a vascular (blood vessel) malformation, where the arteries shunt directly into veins, instead of going through capillaries. The arteries and veins create a “nidus” (Latin for “nest”) of blood vessels, which are prone to breaking because of the abnormal connection between high-pressure arteries and low-pressure veins.
Some issues AVMs can cause include deprivation of vital functions capillaries would otherwise have on surrounding areas, such as bringing in nutrients and taking away carbon dioxide and waste from the cells.
My family and I weighed the pros and cons of the treatment options, ranging from radiation treatments or craniotomy (open brain surgery), to medicating or “waiting.”
Waiting for what? Waiting for the next seizure, the next sign… Which could come in the way of a hemorrhagic stroke when the weakened and overgrown blood vessels ruptured under stress.
After speaking with a prominent neurosurgeon, we came to the conclusion that, given my age, location and size of the AVM, and the fact that I had a long way to go in my potential life span to “wait” for something to happen, I will undergo surgery to remove the pesky “time bombs” from my brain.
At the age of 22, I had no choice but to accept my mortality. That is a cruel, cruel concept to have to accept.
Throughout the months leading up to my surgery, like a hemorrhage of my social life, I spoke with less and less people. By the end, most of my friends did not respond to my messages.
When I asked one of them why we never spoke anymore, she replied, “Because I don’t know how to handle the fact that you are dying.”
Valid point. I would probably feel similarly. How does one interact with someone who is dying, anyways?
She also said, “And I don’t understand why you are so upbeat and happy all the time, and it makes me uncomfortable, because I know you are dying, and I don’t know how to interact with you.”
Another valid point. I apparently made many people uncomfortable with my positive attitude, smiles, and jokes. But there was a reason for the way I acted.
At the age of 22, I had no choice but to accept my mortality. That is a cruel, cruel concept to have to accept.
Life was just “beginning.” I was supposed to graduate college, go on to graduate school (I had already been accepted), and then begin working in a career that I was deeply passionate about.
But instead, I was faced with the reality that I may die soon. And that was a fact that I had to accept, whether I liked it or not.
To ignore and live in avoidance of that fact meant that I wasted crucial last few months of my life by not making the most of the time up until my craniotomy (which, of course, had a mortality risk percentage) or a stroke.
Alternatively, to accept that fact and to internalize it so fully as to fall into depression would also mean that I wasted a crucial last few months of my life, unable to enjoy the miracles and happiness of life and living.
(This mindset was rather ironic for me, because I had been battling clinical depression for a decade at that point, and there was not much I could do to break my depression. Somehow, diagnosis of a potentially fatal disorder was apparently the key for me.)
No matter what I did or did not do, I will come out of surgery in one way or another (if I even made it to that date without something happening).
I had no control over whether I lived or died, and all I could do was to put my life in the hands of the neurosurgeon and his staff, and until then, to live my days as fully as I could.
Every day I woke up, thankful that I had, once again, woken up.
Those who stood by me and helped me through every step of the way are still with me now, and I love them and cherish them (even if I am horrible at keeping up with people; memories of everything they had done for me still pop up randomly in my mind, and I smile).
They brushed off the awkwardness and fear humans innately have towards death and fatality, and walked with me as I inched along a tightrope pulled across a valley of death.
When I laughed and joked, they went along, and allowed me to report to them the sudden fascination I had with flowers blooming amidst cracks of concrete, marveling at the vitality of plants and their will to live against all odds.
They understood that the next seizure I have may not be indoors, but on a sidewalk at night, with no one around to find me.
They understood that I had a ticking time bomb in my brain that may rupture at any given moment, given any number of triggers (or perhaps none at all).
They understood that I am here today, but I may not be tomorrow, and at that point, I could be anywhere from my parents’ home, the hospital, or the morgue.
They called the ambulances and explained my diagnoses to the paramedics as I lay seizing on the floor.
They embraced me (even when they had no idea what to say), prayed for me (even when they knew I don’t believe in God), and laughed with me (even when they probably cringed at the crudeness of my self-deprecating humor).
They pretended with me that “everything is going to be alright,” and treated me like a peer and a human being, instead of a “dying girl” or “sick girl,” as many tended to suddenly see me.
They made sure I had a ride from my late night classes, but also invited me out to dinners or gatherings, no matter how many times I had to decline. If they felt something was off, they called or messaged me to make sure I was alright.
They allowed me to smile and laugh and pretend to be brave, and for that, I owe my life.
Because without hope, how does one face fatality or life-altering catastrophes? Every day I woke up, thankful that I had, once again, woken up.
That day, I could have a seizure again (ending up in the emergency room for the umpteenth time that year), or that day, I could finally have a stroke (which, naturally, had many many consequences).
That night, I would go to sleep on my own bed, go to sleep on the hospital bed, or be in eternal slumber.
I lived day by day, for “tomorrow” was not promised, and, for that matter, neither was “tonight.”
As medications heaped up and conditions worsened, I began to live my life hour to hour, as I did not know how I will be in the next few hours, or if I will even make it to my next class.
“I may wake up, or I may not. And even if I did, I may not be who I am today.”
For the half year that lapsed between my decision to have craniotomy and when it happened, I could not make myself say out loud to even my closest friends what I thought about often, amidst my laughter, jokes, and smiles: “I may wake up, or I may not. And even if I did, I may not be who I am today.”
I could have a stroke, brain injury, or seizure during the operation, and consequences for any of those occurring were unpredictable.
That I may wake up and not be myself, but someone else entirely, frightened me the most.
At that point, can I still be me? If I am who I am because of my personality, my beliefs, and my mind, am I still “me,” when I wake up with a completely different personality?
Did I owe anyone an explanation on why I smile, why I laugh, why I chose to pursue as much a sense of normalcy as I possibly could, even while the “Day” inched closer and closer?
And my friends accepting me for how I acted allowed me to walk on.
Every day was important, because I was not guaranteed another (though, to be fair, no one is guaranteed another day; we just somehow forget this, and live as though we have forever worth of days left to go).
I made it a point to try to find something small and yet profound in lively beauty every day as I counted down my days.
Throughout the years, many people have commended me on my “Bravery,” or called me a “Hero” or an “Inspiration.”
But I was not Brave. I am not a Hero, and I am not an Inspiration.
Those are words for people who have a choice of action. Those who can choose to be Brave or Un-Brave, or act Heroically or Un-Heroically.
The only choice I had was whether I was going to spend my days taking a break from college as many suggested, or if I was going to do it with smiles, laughter, and friends at school, taking classes, and living in a dorm.
The real Bravery are in my friends, who supported me throughout the darkest moments.
They allowed me to take on the days in whatever way still possible, celebrating with me the smallest of accomplishments, like walking up a hill to class, or hitting a month seizure-free.
The real Heroes are my college roommates, who, despite knowing the implications of allowing me to remain their roommate, did not miss a beat when I asked them if it was okay for me to live with them again (they did indeed have to witness my Grand Mal Seizure and call an ambulance again).
The real Inspiration is my mother, who tenaciously walked by me throughout the whole ordeal, and then found it in herself to let me move on with my life, despite everything in her mothering instinct telling her never to let go.
They all had a choice of walking away, and seeing me as “that sick girl who is going to have/had brain surgery,” detached and impersonal.
It would have minimized their own struggles and pain. Given how much of a liability I was, as a person with various high-risk medical conditions, it would have made their lives much easier, with more time for themselves.
And yet they CHOSE to be by my side.
They are the real Heroes and Inspirations, Brave beyond words.
Because there is, really, nothing braver than accepting fatality and mortality of someone you dearly love or care about, and then allowing her to live out the potential last days in her own way.
I am a survivor. But I refuse to merely “survive.” I strive to “thrive.”
Because to merely “survive” would mean that I am wasting the “extra” bit of time I was given, thanks to the work of my support system and doctors.
Time that was denied to many with similar conditions. I will smile and thrive, as an Arteriovenous Malformation, Craniotomy, Acquired Brain Injury, and Chronic Illness Survivor.
The only Choice I had was whether or not I was going to keep on walking and keep on smiling. So I did. And here I am, four years later, and I am still smiling.
This post was published on The Mighty with the title,
Why I’m Not a Hero for Accepting My Mortality After a Rare Diagnosis.
This post was inspired by a New York Times Magazine Article entitled,
“How to Tell Someone You’re Terminally Ill,” by Maria Wollan.
This piece was originally published on Medium on March 4, 2016.
On Accepting My Mortality as a 22 Year Old
October is AVM Awareness Month
I will be posting one entry a week about Arteriovenous Malformation on behalf of Burgundy for Life, an advocacy organization I founded after my craniotomy.
New to my journey? You can check out my Brain Injury and AVM related posts at #MyBrainInjuryJourney.