I Found This Article Thingy

I was roaming through the Huffington Post one day, as is my nature when I’m bored.  I tend to hit up sites like HuffPost when I am bored or feeling inadequetly  informed.  A few weeks ago, I found this article there that linked to Salon, which is another site I like.  The article was not really an article at all but an excerpt from a book called “The Day My Brain Exploded: A True Story” written by this guy Ashok Rajamani.

I think everyone should read this excerpt.  It is an amazing little glimpse inside of the actual bleed.  If you don’t believe me, read this little line that is chosen to begin your quick journey into this man’s cerebral hemmorhage:

Perverted. Masturbating on your older brother’s wedding day is perverted, isn’t it? Well then, call me a perv. Because that’s what I was doing in my hotel room a few hours before the ceremony.

As soon as I started reading this, I began to feel a connection to the author.  The oddest thing about it?  I had no idea it was about an AVM.  All I knew was that a man stroked out while stroking it.  How could I not feel a connection to that?  Oh, by the way, I was in the midst of an orgasm when my avm decided to become its own version of Old Faithful except it really wasn’t old…or faithful for that matter.  He goes on to describe how it was for him during the bleed.  It wasn’t just the masturbating, or the orgasm or even just that he had a stroke at the time one brought him to meet the other, but the way he described it.

He mentioned going blind and hairy palms and I giggled because although I don’t recall that going through my mind at all when I felt my left side go numb, I have had similar thoughts since- most especially within the first six months post-bleed.  He talks about modesty somehow slipping through all the mess that was his thoughts, though he never quite says he actually thought anything specifically.  And I remember how I tried to dress myself shortly after I woke up on the floor of my hallway between my bedroom and the bathroom with my 3-year old asking me if I was OK.  I needed my pajama pants, I told him where to get them.  He retrieved them but for whatever reason I couldn’t get them on (at the time I had no idea why nothing was cooperating).

He talks about instinct and it is true.  You are mildly aware of what is happening but on a deeper level of thought or during your thought process, you are incredibly aware of what is happening and what is going to happen if you don’t flip the instinct switch soon.  This man has a hilarious and witty way of describing how his bleed occurred.  I don’t have that talent.  I am boring and explain one thing fifteen different ways, and they are all long.  But he quickly goes into detail about how he learned about his AVM. I will share with you an excerpt from this excerpt :)

“An AVM is a tangle of veins and arteries hidden in the brain,” he explained.

Prakash suddenly lashed out at me. “See what you get for all your whacking off?” Clearly I must have told him about my private activity before the wedding, although I couldn’t remember doing it. Mom’s face contorted into a grim, stony-faced mask, looking as though her tightened, immobile lips would prevent her from bursting into a flood of tears.

“An AVM is not caused by anything,” Dr. Santanorexic said quietly. “It is a congenital birth defect — a defect that develops in the fetus during the third month of pregnancy. Behavior didn’t cause it. Ashok was born with it.

“The AVM hemorrhage was going to happen someday — turns out today was the day. It usually bursts in a person between the ages of 20 and 40. Many brain hemorrhages and aneurysms are urogenitally based, meaning that they usually happen when a person’s having sex, giving birth, going to the bathroom. In your case, your brother told me you were masturbating.”

He turned to me. “The second you orgasmed, your blood rushed to the brain with severe pressure. The AVM ruptured because of it, causing your brain to bleed, flooding your head with septic fluid. Ashok, AVM bleeds can be fatal.”

He then looked at my family and said gravely, “It’s a wonder he’s still here.”

The fog in my head scattered with this new information. So this disgusting tangle had been hiding in my brain since I was in Mom’s womb. It was my inheritance: a murderous genetic inheritance.

Nothing in my brain scattered; I was never told of CSF leakage so I don’t think that is what happened to me but I have no idea if that is common with AVM hemmorhages or some or only the more severe cases.  Even so, I’m not real sure how they measure an AVM or what measurement or level or anything about my own AVM.  This is one of the reasons why I need this blog; I’m on a mission in a way.  I need more information and I need a place to lay this all down for myself.  And I’m going through some personal shit right now, as always, so I need to….align myself I guess.

Ashok talks briefly in this excerpt about how he felt ill the day he spanked his “monkey into a brain bleed.”  I have talked before to my [now angrily separated] family about how there were signs; we could all bring forth at least one moment or incident or odd blemish from the pasts we shared that could be explained by this AVM.  More freakishly clear was how things had been “different” for me this pregnancy.  Had I mentioned yet that I was pregnant at the time of my stroke?  All of it could be brought back to that damn AVM.

So I haven’t read the book yet.  I plan to.  I think it’ll be affordable one day (ha).  I’m not sure how interesting it’ll be before or after this excerpt but, I’ve read some pretty boring things and this guy seems funny enough to be at least slightly more than bearable.

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2 thoughts on “I Found This Article Thingy

  1. avmomma

    I’m glad you’re still around after all that-especially for your little kid to still have his mom! I had never heard of avm until this year. Then it’s like a flurry of info and you know you should remember all of it but you can’t; it’s too much. The parts that get through are scary and strangely disconnected: how most avms are discovered at autopsy, visions of my child dead, need brain surgery, we are lucky… Yes, we actually are lucky it was discovered in time, before death, before a stroke. But it’s hard to feel lucky when suddenly faced with a crazy rare situation. There’s no one to talk to, no one gets it. You explain and people nod, gasp, get teary and then they go on with their day and sometimes ask weeks later if “things are okay” -and I find myself somewhere between answers. Sarcastic-My kid isn’t dead, if that’s what you mean. Angry-No! Nothing is ok! My kid needs brain surgery before this thing finds a way to kill them! But usually I nod and say “things are as good as can be,” knowing they are just trying to be nice.

    I haven’t read the story you referenced but any story that can shed light on what a person goes through dealing with this is good. I hope you’ll share more of your story, like did the pregnancy work out? How bad was your stroke, how long did it take to recover, and did you fully recover? I understand if these questions are too personal and you don’t wish to answer. I am just looking for any info I can. Some of the same doctors who orginally scared the wits out of me now act like I’m overreacting over wanting treatment quickly. They have a wait and see approach since nothing is getting worse.

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    1. Your reactions and those of the people around you are completely normal. People are often intimidated by the “sick” and by things they simply don’t understand. AVM’s are so incredibly rare that they are dismissed when people first hear of them. My Dr’s provided me with very little information, basically only telling me what they felt I needed to know. Everything else they told me in response to my many, many questions was the same “wait and see” approach or the other common “every case is diffierent” no matter the question. You will, unfortunately, find yourself looking up a lot of your own questions. Personally, I feel it is better that way.
      I do plan to write about my stroke and everything related from the day it happened up to now but it is still an emotional journey! I am waiting for an “emotionally stable” day to do it LOL. But to quickly answer your questions: my pregnancy went quite well; I’m still recovering and probably will be for a good while, unfortunately. No, I will never fully recover because the damage is both inside and out – I am partially paralyzed on one side and have brain damage (no jokes! lol).
      Doctors are…very difficult in situations like this. They provide minimal info, scare the crap out of you and then treat you like you ask too many questions. In my experience I found doctors to be very sterile in the way they talk to you as if the less said, the less complications for them.
      You are very lucky to have discovered your childs AVM early. One of the things I have learned though is that no treatment isn’t always the worst option. Plenty of people live out their entire lives never knowing there was a bomb in heir head. At least with the knowledge of his AVM you and your child can learn how to prevent a future bleed or lessen the chances of one with simple precautionary measures if treatment is not an option.
      Thank you for your comment :)

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