April Nineteenth Two Thousand Eleven

When I first came to, it was as though I was floating up to the surface of a pool. I felt weightless, slowly being pulled up into the world of the living from the soundless depths of water. I wanted to go back.  It was so peaceful down there. So dark and peaceful.  Here… Here was so loud… so bright.

There was something on my face.  My eyes still tightly shut, I groaned and tried to push it away.  It persisted. I tried to move my head to the side to escape.  It only seemed to press down harder.

Finally, I slowly opened my heavy eyelids and pushed it off my face, groaning. “I… don’t… want it…”

It was removed.  Once my eyes refocused, I took in my (way too bright) surroundings.

Groggily, I shifted my blurry gaze from my roommate clinging to the side of the doorframe peering in to the few strangers milling around the small room.

Then finally, to the man holding an oxygen mask in one hand, peering down at me, holding my head with his other hand.

My mouth ached, my head ached, my body felt both stiff and heavy.  Not to mention a little woozy and lightheaded.

After a few slow blinks, I concluded that I was in my university’s off-campus apartment I shared with 3 roommates.

That was strange. I was getting ready for my mid-day class at the university, because my morning student teaching internship had been canceled.  I was supposed to head into class in 30 minutes, so I was putting my contacts in, getting ready for my 1PM class.

What was I doing on the floor of my bathroom, surrounded by strangers all peering into my face?

The man with the oxygen mask spoke slowly and calmly first: “You’ve just had a grand mal seizure.  Your roommate heard a loud noise and came over to find you seizing on the floor.”

In the coming months, I came to expect the slow, deliberate, and low voice of the first responders.  I concluded that they are trained to speak in this way as to not further agitate a person in crisis.

I felt warm liquid trickle down the corner of my mouth, so I reached up slowly to wipe it off.  It was blood.

“It seems like you’ve bitten your tongue,” another EMT said, dabbing my hand and corner of my chin with a tissue.

Now that she mentioned it, I could tell that something was wrong in my mouth. My tongue felt way too big for my mouth, and I tasted the metallic zing of iron and dull pain from the whole right side of the tongue.

(I will later learn that I had bitten off almost the whole right side of my tongue during the seizure, though thankfully the wounds were superficial.)

“I have a few questions for you.  Do you think you can respond for me?” the man holding my head asked.

I nodded slowly, still struggling with the simple concept of blinking. One. Two. Three…

“Do you know what your name is?”

“Hiroko,” I groaned.

“Do you know where you are?”

“My apartment,” I shrugged.

“What day of the week is it today?”

“Iono… Wednesday?”

“What’s today’s date?”

The date was April 19th, 2011.

Once it was determined that I was stable enough to be moved, they strapped me into a foldable gurney and carried/wheeled me out of my apartment and down the one flight of stairs, straight into the ambulance that was waiting for us outside.

On the way, I asked for my phone to text my friend and classmate: “Hey. Can you tell the professor I can’t make it because I apparently just had a grand mal seizure, and I’m on my way to the ER?”  In that same class, we had just finished a unit on seizure disorders.

The sound of the ambulance siren and the flashing lights still haunt me now from my numerous trips to the ER in those months, putting me in a state of mini panic-attack every time one gets too close to me in the streets.

My father came to meet me at the emergency room as I lay, IV giving me fluid, and I was carted around to get a brain scan. Finally, after a short consultation with the ER attending doctor, I was sent home with anti-seizure medications and a small slip of paper that gave me a name of a local neurologist.

We spent the next 3 months being shipped off to get one type of brain scan after another.  MRI, CT, PET, MRA… Every alphabet soup of acronyms… I had them all.

Finally, after an MRA (Magnetic Resonance Angiography), I had a diagnosis.  It was a warm July day, 3 months after my seizure, a month after my 22nd birthday.

I was diagnosed with Arteriovenous Malformation.  A vascular (blood vessel) malformation in my brain, which was causing my seizures, had potential to grow, and increased my chances of having a stroke that could very easily prove fatal.

“There are a few options,” my neurologist told us.  “You will have to choose.  It’s your decision, as a family.”

Half a year later, on December 7th, 2011, I was put to sleep for my open brain surgery at Johns Hopkins Hospital in Baltimore, Maryland.

If I am to Live to See Another Day…

The night before my surgery, I left this lyric from the Sound of Music on my Countdown Blog I began 3 weeks before my surgery:

So long, farewell
Auf Weidersehen, goodbye

I leave and heave
A sigh and say goodbye

I’m glad to go
I cannot tell a lie

I flit, I float
I fleetly flee, I fly

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).

9 thoughts on “April Nineteenth Two Thousand Eleven”

  1. I have been on the end part of acquisitions and this is the first time been on the receiving end. The feeling isn’t great but I’ll get over it. 🙂

  2. A milestone for sure – 7 wonderful years to celebrate. I am almost 7 months out from the AVM trigeminal nerve and 2 aneurysms surgery which all started with a shooting pain in my left eye and a slow numbness that took over the left side of my head, face and neck. I was airlifted to Brigham and Women’s in Boston from a rural Maine hospital. 14 days later I was back in Maine with over 40 sutures in my head, numbness, jaw dislocation, deafness on the left, eye infection and the best husband in the whole wide world to take care of me. I had to learn to eat differently as my throat and tongue were numb on the left side, my balance was off, and life seemed upside down. I still have a long way to go as they discovered a filling defect in my upper left jugular vein and I am on blood thinners, jaw surgery to fix my bite and continued therapies. I too am grateful to be alive but as you know this is no easy journey. I too hope to celebrate the rest of my years. I am a 62 yr. old retired special education technician III and student advocate. We share that commonality. I wish you the very best. Happy Anniversary!

  3. You are so strong! I’m glad to see you were able to overcome this crazy life episode and keep moving forward in life, although I bet it’s not always easy. You rock!

  4. I got teary reading this post, I really felt like I was in your apartment room with you years ago. Thank you for sharing the start of this journey with us, it’s helped (for me) put the pieces together. You’re amazing, I WILL SAY THIS AGAIN AND AGAIN, but honestly, you are incredible. You should be proud of how far you’ve come, you’re brave and an inspiration to us all!

    *big hugs irl soon when i get my ass back to NY*

  5. I’m so glad you pulled through all that. Such a scary thing to have to deal with too. In the beginning, when you described how you felt during your seizure, I had a sense of de ja vu. You explained it well and it took me back to when I seized (not completely sure what I did) in the hospital and I did not want to wake up from it either. I was at peace and not hurting. Thanks for sharing this story. ♥
    I never heard of an MRA until your blog entries, it is crazy how many of those scans you had to go through before they found out the problem.

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