On Accepting my Mortality at 22 – #AVMAwareness

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?

I didn’t.

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.

Hiroko Nishimura
AWS Community Hero. Special Education teacher turned IT Engineer turned Technical Writer. Author "AWS for Non-Engineers" (Manning Publications). Technical Instructor "Introduction to AWS for Non-Engineers" (LinkedIn Learning).

25 thoughts on “On Accepting my Mortality at 22 – #AVMAwareness”

  1. I think you’re amazing Hiro. You have gone through so much already and yet that doesn’t stop you from living your life.

    I’ve only really remember you from our lj days but I think that’s one of the things that drawn me to you and made me remember you after all these years, how you always remain positive no matter what happens and I really admire you for that.

    1. Thank you so much Julie <3 It's an up and down thing, but seems like after being that close to death, my brain decided, "Ya know what. Seems like I've tugged a short stick. Might as well make the best of that short stick." LOL! Thanks for catching up with me after all these years. We should definitely grab a nom soon again 😀

  2. I absolutely love this post. Your outlook on not only your life, but life in generally is honestly inspiring. And how you described the friendship of those who’ve stood by your side makes me incredibly grateful for those who I know would do the same for me. Thank you for the sobering but inspiring reminder about how little control we have over life, so we truly just need to soak it in and live it up. You are a bad ass.

    Susie | http://milehighdreamers.com

    1. Thank you so much for reading, Susie 🙂 When you’re so close to the end, and given a “choice,” I had to just make one and run with it!

  3. That’s such a heavy reality that you had to face at a young age 🙁 I think the way you handled it is amazing, and I think you make a good point about making the most of your time. I’m glad you had people to support you along the way, too, who continued to treat you normally and watch out for you. You have some really great friends! Thanks for continuing to share your story with us, Hiro!

    1. I’m glad I got that out of the way while I’m so young so I was able to kind of “recover” emotionally before I had all the real adult responsibilities. 🙂 Ready or not, I’m gonna continue sharing, because I think there are so many of us but so little noise about surviving things like this…. I felt so alone, but now I know I was no where near alone! Thanks always for being a friend, Cat 🙂

  4. Very maturely handled. This is not something within my space/authority to comment on beyond a simple acknowledgement and appreciation for your nuanced description. It takes a lot of humility and introspection to be able to organize your thoughts into the words. Thank you for sharing. 🙂

    1. Thanks, Etta 🙂 It’s definitely one of those things that sucks to experience, but I’m probably better off as a person because of it.

  5. This was such a heavy reality to have to go through at such a young age, but the way you handled it was so beautiful. Incredibly beautiful. It wasn’t easy, but you made a choice to make the best of your life and be happy! I’ve always enjoyed your posts, but reading this blog has caused me to look up to you in a whole new way. I can only hope that on the day I have to accept my own mortality, that I can do it with the grace and maturity that you have. Love and Light <3

    1. Thank you so much, Angie 🙂 It’s definitely one of those “once in your life” moments for most people (hopefully!), but for better or for worse, it happened so early in my life that now I can definitely live life and see the simple fact of living in a brand new light.

  6. Oh my god Hiro, I’m at work right now with tears in my eyes reading this. I will say this forever but I admire you so much. The way you accept your reality, the way you are so graceful and strong. Accepting mortality is difficult and isn’t even thought of by many people. God, I admire it all so much.

    Sending you lots of love and light as always.

    1. Thanks for always being there to be a cheer buddy! I always enjoy seeing what awesome things you’re up to, and cheering you on. 🙂 Reality is definitely a very difficult thing to accept, and I see many people suffer with it, but I’ve come to find it’s definitely much easier to live and thrive when you make that acceptance and then try to figure out how to still live the live you want despite the obstacles. <3

  7. Such a powerful post and the journey that you have been on is a remarkable one. The support that you have had from your good friends and family is fantastic. I find it awful that other people would lose touch with you and make comments that centred more around themselves and how they can’t handle the situation, rather than just being a friend and offering love and support. Thankfully the people who cared the most were by your side and were respectful of how you handled this journey in your way.

    1. Thank you so much, Kya. It was a very sobering experience to realize that most of your friends were no longer friends, but at the same time, knowing that the people who stayed can be counted on to be life-long friends. And interestingly, it wasn’t even the people whom I was closest to at the time who stood up and took the baton to help me. And those people are my closest friends today, still, 6 years later, and I’d imagine, for a very long time 🙂

  8. *wipes tears* This post truly touched me. I had not realized before this post that you had been through this much. You’re truly an inspiration. Despite a diagnosis and outcome at such a young age is so astounding, I admire your positivity and strength. At these times, leaning on your friends and family for moral support is the best thing for you.

    1. Thank you so much, Brandy. One of the important things I learned is that I definitely should and can ask for help when I need it. And it’s not a sign of weakness; it’s a sign of strength to be able to ask for help, utilize the help, and grow to provide same kind of help to others in need 🙂 Hope you’re recovering well from your surgery!

  9. What an awful experience it must of been, but I love your attitude throughout it. More people should treat life like that. And how lucky you were to have such wonderful people around you for it. =3

    1. I indeed have been very blessed with my situation! Without my parents, family, and friends, I definitely won’t be working in NYC, pursuing a career, and getting to think about things other than just making ends meet and going to doctor’s appointments 🙂

  10. Very, very touching, powerful, and scary post Hiro. I know we don’t know each other very personally, but I want you to know I frequently pray for you and send well wishes your way.
    I cannot imagine how hard your life has been in recent years with all of your health concerns. ANY neurological disorder is beyond scary, but to have gone through everything you have and still be a kind person is amazing.
    You’re such a strong woman, and honestly an inspiration to many that no matter how shitastic and hopeless something might seem, there’s a light at the end of the tunnel.
    Never forget how special you are. <3

    1. Thank you so much, Shanae 🙂 My life definitely changed for the better, especially in the ways of mental health and my ability to “reorient” the way I think, so as scary and life-threatening as the illness was, I’m glad I got through it, and came out kicking on the other side!!

  11. I just found your blog, I’m completely moved by how raw and real you’ve been on your personal journey. Even though I don’t know you, I feel really connected because of how open you are.

    I can’t wait to continue reading the rest of your blog – I am rooting for you!!!

  12. Just recently had a AVM bleed while almost finishing college, affecting my language area. I have been feeling a bit discouraged, hopeless and always sleeping as speaking is very important for my job. Reading your blog has inspired me to stop sleeping and take little steps to get better. You have accomplished a lot despite your AVM, difficulties and surgeries, I am amazed and I hope I can start making improvements from today on. Thanks for being an inspiration! Looking forward to reading more from you! You are an amazing, strong and positive person! 🙂

    1. Hi Nancy,
      Thank you so so much for your sweet comment! I’ve experienced the same, as writing was SUCH a huge part of my life. The aphasia robbed me of my only form of expression, and I felt extremely lost. I think I really started getting into photography because of that; since I don’t need words to express things. But I decided I’m never going to get any better if I didn’t practice, so here I am, writing little by little. I hope you will start to see the baby steps turn into big results! Please feel free to reach out any time. It’s so difficult to find peers who have the kinds of experiences we do, and it feels so isolating sometimes… But we exist, and we’re powering on 🙂 Thanks again!!

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