Well, since I'd juuuust been talking about this with someone, AND had two in a row first thing after waking up yesterday (first time ever), I thought I'd post this story that I'd written a while back.
11/4/2008
In 2007 I thought I was going to die. This wasn't a brush with death, it was a more like a brush with the
thought
of death. But you have to understand, I never thought about it before,
not really. Not for myself. The only time death crosses my mind is in
fear of those I love dying and then I do everything I can to quickly
brush it away. It's too painful to think about how ruinous the loss
would be, sweeping away my entire life and transforming my innards into a
desertscape of despair. I can't bear the thought. So I generally try
not to think of death.
But last year I went to the doc
for weird optical hallucinations. I learned that they were called
"optical migraines" and can occur without any actual headache pain --
they're basically blood vessels in the optical centers of the brain
spasming. So doc wanted me to get an MRI of the brain.
I
remember getting the message on my cell phone, the doctor's worried
tone urging me to call back. And I remember standing in the hallway at
work by the windows, where I could have both reception and privacy,
feeling calm as I dialed the office. Nothing could be wrong, I am too
young. I am healthy.
I remember the confidence dissolving into
fear as the doctor elaborated on the possibilities. "It looks like it
may be an arteriovenous malformation," he said. "if that's so, you
will need surgery to correct it."
Brain surgery? Knives
and brain matter should not casually be mentioned in the same sentence.
I spent my entire life not running with scissors and now someone may
have to bring sharp objects towards my head on purpose? I was not liking
this.
The followup test to determine if I really had a problem was scheduled for three weeks later at Johns Hopkins.
Three weeks! It was torture. I had no idea if one month later I'd be gratefully relieved or sitting on an operating table.
If someone told you that you might die in a month, what would you do?
I
mean, maybe you wouldn't die. But you might. You have to think about it
suddenly. "I have 3 weeks to wrap up my life," you'd ponder. What could
it possibly mean and how can you possibly do it?
What
if I did have to go under the knife and woke up unable to speak? Move?
Suddenly have the intellectual capacity of a 2-yr old? Or need to
relearn the English language? Anything can happen when someone is
slicing into brain matter and careful reading of the diagnosis and
treatment doesn't gloss over this fact.
An
arterio-venous malformation is a birth defect where veins and arteries
are connected directly together. They shouldn't be -- arteries are high
pressure, veins are not. There's too much turbulence, like opposing
currents in river rapids. Instead, they should be connected through
smaller and smaller vessels that eventually turn to capillaries which
are so narrow that red blood cells must travel in single file through
them, like a 5 lane highway narrowing down to one lane, traffic slowing
until the road opens back up.
Since there is no
narrowing, the highly turbulent flow translates to an extremely serious
risk for a brain bleed and/or death. High enough that surgery is
standard treatment. It's not a "wait and see" situation -- if you are
diagnosed with it, likely you will go under the knife immediately because it's
better to preemptively deal with the risks in a controlled setting than
wait for the emergency of treating a burst vessel in the brain.
For
three weeks, I tried to tie up loose ends. And not tell anyone, since
why should I worry them if it's nothing? It's tough reigning in the fear
and the existential thoughts.
But I'm not done, I'd think.
I haven't traveled enough, lived enough... written, loved, laughed... not any of it enough.
How could any of it be enough?
For
three weeks I lingered in limbo, trying to carry on my normal routine.
Trying to talk myself out of my fear. Anyone could die anytime, really.
None of us should obsess over it, right?
Ugh, right. Try it.
My
story ends happily. Nothing was wrong. I basically have a giant
varicose vein in the brain called a
venous angioma that can sometimes be
mistaken for an AVM. A picture of my brain is going to appear in some
medical text illustrative of a classic boring case. It wasn't exactly
how I'd hoped to be published someday but I'll take what I can get.
I
have always felt especially strongly for people undergoing a medical
crisis. I remember writing to a good friend's mom as she battled cancer
and I will never forget how grateful she was when people asked how she
was feeling. People are afraid of cancer and life-threatening
conditions. Afraid of frailty and somber diagnoses, afraid to broach the
subjects that a terminal illness brings forth. But really, all most
people want is to know they're thought of. In their pain, in their
hardship, in their joy. What matters in life is knowing that we are not
alone.
And so I think about that brush with the thought
of death, and about people facing it for real. And I write to some
close to me facing the battle. I want to tell them that I'm thinking of
them, that they are not lost to me, that their pain is not invisible. I
only wish I could share the burden more fully but all I can do is
helplessly acknowledge it.
But that's something.
 |
What you see during an optical migraine
(it starts out as a pinpoint that grows larger, eventually
arcing into these jagged shapes that pulse
with flashing light & rainbow colors). |
ps.
After I wrote this, a lot of people started asking me if there's an
association between optical migraines and my situation. There isn't. My
MRI finding was incidental, meaning doctors were looking for something
else and while in there, noticed this other thing (the venous angioma).
Both
AVMs and venous angiomas are present from birth but neither have
anything to do with optical migraines. (At least that's current thought,
but I did wonder if there could be a slight association for those with
AVMs -- not venous angiomas -- located in the optical centers of the
brain [the occipital cortex] since the turbulent blood flow can
sometimes cause ischemia [or a lessening of blood flow] to surrounding
tissue. But I am not a doctor and to date an association has not been
proven.)
I did learn a lot about optical migraines though in the
process. Recent studies show that there is an increased risk for stroke
in people who have them, so if you get optical migraines, don't smoke,
don't take birth control pills, DO exercise and eat healthy... in short,
don't do anything that further adds to your risk.
I
started getting the optical migraines about two years before getting
the MRI I wrote about above. They're disturbing -- it's hard to
concentrate when one is occurring because it's such an odd experience. Luckily they only last around 30
minutes. For some people, the optical migraine leads into an actual
migraine with crushing head pain but not everyone.
My doctor at Johns Hopkins neurology was Dr. Wityk
(pronounced "wee-tek"), he's fantastic. He asked me to draw what I saw
during an optical migraine and I drew the above picture. The jagged edges are also pulsating with light and color. He said he'd
often ask patients to draw a picture of their optical migraine and if
they come up with something that looks like this, they're diagnosed: yes, that is an optical migraine.
You can see more optical migraine art if you do a Google image search for "optical migraine" "ocular migraine" "opthalmic migraine" or "migraine with aura" -- all of those essentially mean the same thing.
Followup:
So, somehow I had written this and told the
entire internet but neglected to tell my mom.
I was talking to her and was all, "haha, yeah, I felt that way too when I had that brain thing!"
She's like, "Um, what 'brain thing'?" -- all concerned and motherly-like.
I
go (still not getting it), "Remember? When I was having those weird
optical illusions and had to get an MRI and then it showed that weird
thing? And they wanted to do more testing?"
She was silent.
"WHAT brain thing? What are you talking about? You never told me about optical illusions or a brain thing."
Me: "Really? I wrote about it on my blog. Huh."
See? You don't really know someone until you read their blog. lol!
