“I had completely lost emotional memory.”

- The Day My Brain Exploded (Ashok Rajamani)

And my new Aneurysm/Arteriovenous Malformation Awareness Bracelet from Burgundy Butterfly (I love it!!).

One year ago, at 7AM, I was wheeled into the operation room on a stretcher, connected to IV’s. A cup was placed over my mouth and nose, which poured dry air into my lungs, and I remember coughing and wheezing, and struggling against the air being blown into me.

“It’s just oxygen,” someone stated. That is the last thing I remember before waking up in a very dark room, much of the world in a haze.

This past year and a half has been filled with confusion, turmoil, pain, desperation, opportunities, and blessings.  At every corner, where I allowed myself to dwell on, “It’s not worth it…,” I was able to find something to bring me back. 

I do not have the time to be writing a comprehensive list of people who have given so much to me and my recovery in the past year, as I have quite a few final projects due in an hour, but I just wanted to give thanks to all of my friends who have stood by me, and gave me their friendship, time, and energy to keep me standing, my mother, who has always been there with me, suffering equally, if not more, and my boyfriend who has come back into my life a few months after my surgery, and is the one who has to deal with and see all of my mental break downs, and neurological abnormalities manifesting on a daily basis.

Much love to everyone, and I will hopefully be able to make a better post later in the day.

December 7, 2011 is a day that changed my life, and I am blessed and in awe that I have made this far in such a short period of time.

December 7, 2012.

I wonder if people realize, when they vehemently argue against Affordable Care Act (aka: Obamacare) with me, they are essentially trying to convince a sick person that she doesn’t need insurance.

There are from 11 months ago.  Literally 1 month and 1 day until 1 year anniversary.

Thank you for your compassionate and insightful arguments against me, my life, and millions of other people who need insurance the most.

I finished a 5K Walk/Run for Brain Injury Association of Maryland today!

I am so grateful to have been able to do this- you have no idea.  And the remarkable amount of support I had, both in donations for the fundraising page and for me doing the walk were amazing.  And amazing were my best friend and my other friend for agreeing to walk this with me!

My 1 year anniversary for my brain surgery is coming up in a month, and I can’t even begin to express how grateful I am for everyone and everything that I was blessed with having with me in the past two years.

The Mid-Atlantic AVM Survivors Meet-Up (6/30/2012) was very exciting.  It took an hour and a half before people other than I, my boyfriend, and the hostess showed up, but after a while, a few people came, and it was great to have been able to meet and talk to people who went through the same kinds of problems I did, with the same medical diagnosis, in person. 

I have never met anyone who had an AVM before today, so it was a great experience to be able to talk to people who knew what I was talking about, face to face.

I’ve talked to a lot of people who have had “similar experiences,” or maybe invasive surgeries, have seizure disorders, and many parts and pieces of what I’ve gone through in the past year, but it was maybe a little comforting to find that there are people with my exact diagnosis (1 in 100,000 people is hard to find from just daily encounters), having had to make the same kind of decisions I did (whether they made the same one I made or different was also an interesting topic), and how they are living now, months, years, a decade after it all. 

One lady came all the way from Delaware, another from Virginia… All the way to us through all the rubble and power outages from last night’s huge (unexpected) storm.  What dedication.  I would probably have turned back and hoped to be invited another day!

I met so many strong and remarkable people today, and I hope to see them again and get to know them better in the coming meet ups that were promised.  :)

Thank you so much for organizing the event, Leslye!

(And the wraps were delicious… next time I hope I can stay for the cake, too! I took the photo of the cake and had to leave before it…)

The event left me very exhausted and with a headache that still hasn’t gone away after 2 hours- not sure what’s up with this…

Maybe my brain was resonating with the other brains… “Hey!! WE ARE EXPERIENCE BUDDIES! WE ALL WENT THROUGH THIS!!”

My oh so very happy self-taken photos from the sleep study that ended yesterday afternoon (went in at 8PM, and came out around 2PM the next day).

Apparently no narcolepsy- I am just a “very good sleeper,” according to the technician (went into Stage 2 sleep 4 times in a row within 10 minutes). 

And no seizure activity in the temporal lobe (though it’s not like I was having sleep paralysis during the EEG, and haven’t had one in a few weeks, so it would be extremely difficult to tell).

Well.  I guess we’re back to squarer one on “Possible Reasons Why This Girl Is Always Exhausted And Sleepy And Keeps On Having Weird Hallucinations With Her Sleep Paralyses.”

Exactly half a year ago today, I had a bit of my skull cut out, brain poked around, skull glued and pinned back into place, and scalp stapled back together.

I think this photo was taken only a little while after surgery in the ICU, because the first time I remember being conscious, everything was dark.  I had no idea until now that the ICU room even had windows.

It has been extremely tremulous and nerve wrecking past year, and there were quite a few times I was not sure I would be making it to my 23rd birthday (which was a few days ago). 

Even if I were alive, there was also no guarantee that “I” would have lived to 23, because of the location of the AVMs- the area that controlled personality.  (This was actually one of my biggest fears.)  It wasn’t that I really liked who I was as a person, but I was who I was, and I wasn’t ready to “become” someone else. 

I think I’ve managed to retain most of who I was before surgery (other than learning a few new important things about value of things and life), though I can feel some slight changes (mainly my moods and temperament). 

I don’t remember a lot of things that happened in the recent past, but the important things, I do… I think (when I say “I vaguely remember…” or “I don’t remember….” I’m not being sassy- I really don’t remember or only vaguely remember).

I was going to make this into some nice coherent entry, but I am exhausted from an hour and half of yoga and withdrawal symptoms from cutting down on my anti-seizure medication again, so I am going to just take a shower and go to bed.  It’s becoming more and more difficult to not feel like there is a big puff of cloud in my brain, getting in the way of thinking and doing things.

So here, have a really derpy picture of me today, because being photogenic is too mainstream.  I hope you like how well my rock hopper penguin hair-do is progressing.

December, 2011

Recovery period

Who would think I have a 1 foot long scar running across the top of my head under hair?

6 weeks after surgery (1/20/2012).

This time last year, I was studying abroad in Europe, visiting the Netherlands, Germany, Belgium, and France.

With no idea that the rest of the year was going to be a disaster.

How scary life is.

So my dad’s company’s satellite company in Germany’s vice president sent me a get well gift, and I am a little confused with the cryptic message that came with it.  

The letter said,

Hi Hiroko

A strong girl needs a strong Partner

I wish you all the Best.

Is this like… A German saying translated into English thing, or is he proposing that I get married (to someone), or that I get married to this teddy bear he just sent me…?

Now I’m not even a princess anymore.

They took away my tiara.

One staple at a time.

57 of them.

Ow.

Now I just look like a slightly balding girl with a scalp problem.

Life sucks, yo.  Where are my magical powers?

We learned today that the hole in my cranium is actually not filled by cement, but just smoothed out by it.  Makes me feel a tad better, I suppose.

I found a photo of myself with the same pose a few days after surgery and was going to upload it here as comparison but then realized it was probably too gross and TMI for the general public woops.

I actually did “clean” my room before I left…

-6 Days?

I can’t count.

But I am back.

Well, have been back for 2 nights now, constantly oscillating between a headache in some random part of my brain or a mild high from painkiller (probably Tylenol. who knew).

I have my head sliced from past left ear almost to my right ear, 57 staples, and left frontal lobe all fortified with cement! Superhuman yet?

Apparently when they went in to cut the AVM out, they found two smaller ones underneath.

How do you just find little AVM’s underneath others while cutting one out and just what…

I am going to spare you the whining of how they are treating my post neurosurgical pain with Tylenol and actively tried to kick me out of the hospital after 3 days despite the fact that I stayed one of the nights in the ICU spending most of the night throwing up blood or having nosebleeds.

But no more needles and blood and glucose pricks and shots and insulin and stuff is good news to me.  Even though I still can’t move and thinking about thinking puts me in pain. 

I swear all I do all day is think about Tweeting because the actual prospect of Tweeting hurts too much to even think about and all I am thinking about Tweeting is how Tweeting will hurt and I mentally tweet the same thing 30 times because I can’t get past the “Moving is going to hurt and my head hurts already.”

I live my life very productively.

That being said, Texting and Twitter are easiest ways to get to me, and calling may not have that good of an effect.  Or long blocks of text. Keep it short. :D

Thank you all for all your support! Now I am just going to go… Loop on the couch for a few hours again…

( Here’s a photo from maybe day or 2 after surgery after they moved me out from ICU, pretending to be alive. )