AVM Survivors Network: Arteriovenous Malformation Support

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“You can hold yourself back from the suffering of the world; this is something you are free to do, and is in accord with your nature. But perhaps it is precisely this holding back that is the only suffering you might be able to avoid.”

-Franz Kafka


Whenever I go to a bookstore I’m always struck by the size of the self-help section; obviously, those books hold someone else’s notion of what that hyphenation means. But truth be told, I don’t take very good care of myself—when I write, I often forget to eat until starvation kicks in, or stay awake until exhaustion puts me to sleep. It’s very stupid of me, considering.

The other day I found this question posed on another networking site : “If you had your life to live over again, what would you do differently ?” This is always an interesting topic for speculation, but a better question, I believe, is found in Nietzsche’s Thus Spoke Zarathustra:

If you knew you had to live this same life you’re living now over and over again—have you experienced the moment that would make this a message to rejoice in ? Or how well disposed towards yourself and towards your life would you have to become to want it all exactly as it has been, times without number...

So many people live as if there is all the time in the world; my parents, for instance, married young and I was born not too long thereafter, and as a teenager I witnessed the emotional devastation my father’s mid-life crisis wrought on a family which had already seen its share of emotional devastation. My father seemed struck by a new vision of all the inherent wonder and attendant danger that living abundantly contains—and the result seemed to be a fear that he might die before he ever lived that way.

I vowed not to make this mistake. I deliberately set out to transgress and transcend convention, I was determined not to settle for mere contentment.

I had a seizure when I was in my 20’s, and after a lot of testing the doctors found an arterial-venous malformation in my brain; similar to an aneurysm, the condition is congenital and characterized by a glut of arteries and veins which feed directly into one another with no capillaries in between. AVMs are relatively rare, a sort of birthmark on the brain, and some people live their entire lives with one and have no complications. Depending on the individual, the risk of living with an AVM is the possibility that too much emotional or psychological upheaval, or physical activity ranging from going into labor to strenuous but ordinary exercise, can cause the entanglement of blood vessels to burst, resulting in stroke, paralysis or death.

There was no other likely cause for the seizure, and since the AVM was close to the optic nerve, the doctors felt it was unsafe to operate; treatment consisted of seizure medication and the advice to “try and live as stress-free a life as possible.” I remember looking at the doctor as if he were mentally-challenged and asking what the hell that meant.

I went on with my life as I had determined to do; I took risks and went against the grain. I did a lot of stupid things, and a few wonderful things and one or two things which in hindsight I know were cruel. But whether terrible or beautiful, in all things, I counted only mediocrity as a sin.

Later, there were more seizures, migraine-like headaches, bouts of nausea, more medications, and after more tests were run, they found a second AVM not far from the first; I’ve been unable to work for over a year now, and I miss it. But writing is the only other thing I’ve ever wanted to do—and, now I have the time.

I tell this story and say I don’t take very good care of myself, and in a certain sense that’s true; my diet’s lousy and my sleep habits are worse than my eating habits. But for now, I have the time to write about my life, not to impress or garner sympathy, and certainly not to dispense folksy, Southern wisdom. I write to share what I have learned from the experiences I know I share with many others, and because I feel that I’ve been lucky in my life, maybe even “blessed”; I can honestly say, I would gladly live this same life over again.

Unlike discovering you have a fatal illness, where you might decide to live more abundantly in the time that’s left to you, my condition gives me a heightened appreciation of the wisdom in Nietzsche’s words. From one moment to the next, the question is whether we want this again, times without number—because for all we know, there’s all the time in the world.

Tags: av, headache, kafka, malformation, nietzsche, seizure, spoke, thus, zarathustra

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Mike Roberts Comment by Mike Roberts on August 12, 2009 at 12:09pm
Hi,

I just wanted to say you write well. It's unfortunate that you had to suffer from the AVM's to allow you time to write. I know the feeling. In my late thirties, I decided to start teaching. Just at the start of my second career I was hit with a stroke when the AVM bled. Now, I don't know if I can resume teaching. I miss it. I've been working as a sub in a nearby school, but subbing is not the same as having your own classroom.

I also believe in what you said. Life goes on. I am enjoying what I can. I was fortunate, I started life, got married, eventually found a career that I enjoyed. You do what you can with the limitations you have.

You may have already, but did you ever think about going to a publisher with your work?

As you have written, somebody with an AVM (or that lives with any life threatening situation on a daily basis) has a unique outlook on life and you do a good job of conveying what you feel.


Welcome to the new group, just part of the old group.

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