Thursday, January 8, 2009

true story, one picture

I've had a number of strange experiences but it was the night of New Year's Day seven years ago when one of the most intense adventures took shape. I'd been doing yoga routines followed by meditation nightly for more than two years and was generally more relaxed but on this particular night as I sat in meditation, a shocking explosion of white light rocketed through my head. It was gone as fast as it came but thinking I must be very tired I went up to bed still seeing tiny light flashes as I climbed the dark stairs. I fell into a deep sleep and woke up the next morning in the emergency room of the hospital where I'd worked for eight years. My husband, who was holding my hand, looked a complete wreck.

He told me he was awakened at 3:00 am to find me shaking and struggling to breathe. His first thought was that I was having a heart attack and turning on the light he saw I was blue and either deeply unconscious or the other thing. He checked again to make sure I was breathing but couldn't wake me so, not knowing what else to do, carried me down the stairs, dialed 911 and held onto me until the firemen arrived. I have a brief memory of trying to fight off these big guys wearing black rubber suits who were trying to stick needles into me but little else. I knew I wasn't dressed for meeting strangers. Really, what's the world come to when you can't be safe in your own bed?

The doctors at the ER never did figure out what had happened and neither did my general practitioner when he read the notes a few days later and told me to call if anything else happened. Nothing like it had ever occurred before and my husband was adamant he didn't want it happening again. Neither did I but I had no memory of the event itself. Recalling the firemen having said it looked as if I'd had a seizure he did a web search when we got home and when he read the description of grand mal recognized what he'd witnessed that night.

Strangely enough, I'd spent my first two years at the university hospital working for a neurosurgeon who specializes in treating brain tumors so the next afternoon I went up to his office for an unofficial consultation. He read the ER reports then asked me how I'd feel about seeing the inside of an MRI scanner - now. Oops. Having an MRI is like being inside the sound box of a giant instrument played by a madman. Thankfully, the meditation exercises served me well by easing the claustrophobia I suffer at the idea of being trapped in an enclosed space.

The next morning the doctor called and said he'd arranged for me to have another scan, this time an MRA, and that we should meet him in clinic immediately after it was done. Having worked closely with him I was well aware that he only gets excited by fascinating medical conditions. Remember I said he treats people with brain tumors? I remembered the code we'd use at another neurology office when we were scheduling scans for headache patients - rule out BFT - which meant Big Fat Tumor. Aargh! The MRA, for magnetic resonance angiogram, was the same as the last scan but in a different machine. I was beginning to understand the music.

As promised, the doctor met us in his clinic and, much to my dismay, was practically dancing with delight as we walked back to the consulting rooms where the computers were up and running with the strangest pictures I'd ever seen of myself. The MRA had produced a full color video image of the blood flow into the left side of my brain where a golf ball sized mass of tangled tissue throbbed with a little mind of its own. We looked more closely at the screen as the doctor and his senior resident introduced us to my AVM and its associated aneurysm. They explained that although having one was a bad thing, the good thing was that it hadn't killed me before I was 30. The extra good thing was that with modern advances in surgical treatment they'd be able to cure me.

What is this thing - an AVM? I'd spent ten years working in neurology and had never heard the term. It turns out it's a vascular abnormality where an artery is attached directly to a vein with no capillary bed in between to lower the arterial pressure. If you imagine what happens to a loose garden hose in an empty bucket when the tap is turned on you'll know that's what had been going on in my head (empty bucket is apt as well). AVM's can be anywhere but having one in your skull is an especially nasty business. I'd been born with it and over the years it had grown enough that one night a twitch had ignited a cerebral storm.

The doctors, now a group of specialists, agreed this was a time bomb that had to be defused sooner rather than later. I had an angiogram done a few days later so the feeding vessels could be identified. In order to do this the neuro-radiologist punctured the big femoral artery in my groin and threaded catheters through the maze of the arterial map, through my heart, on up through the carotid on the left side of my neck and all the way to the top of my head where the little bugger was nested. He very kindly gave me some pictures to take home for the family album. The print isn't scannable so the picture here is very like it except it's missing the bulging aneurysm behind my left eye. It kind of looks like a strange tree.

Plans were formulated that I'd be admitted to the hospital for two days worth of surgery once all the pre-op testing was complete. The neuro-radiologist would block the feeding arteries with coils and glue which would effectively starve the AVM and the following day the neurosurgeon would excise the thing. It sounded pretty straightforward to me and we were both convinced it would be fine. What else could we do and how do you tell your mother you're having minor brain surgery? The doctors joked I'd likely be smarter afterwards since I'd have better blood flow to the cultured part of my brain.. an arguable assumption but I was in no position to quibble.

An interesting thing about brain surgical procedures is that, although you can't feel anything, you're never completely unconscious while they're happening. Since the surgeons need to be sure of not damaging anything you might need later, the anesthesia has to be handled delicately. While they drilled, sawed, cut, peeled, sewed and screwed little titanium fasteners, I dreamed I was turning into a dragon. Funny how these thematic images recur and how some dreamed experiences seem more substantial than mundane reality. It must have been the drugs. My clawed feet grasped the bedrock under the hospital, huge wings unfurled and I looked out over the city, the river and the mountains in the distance. Just as I was thinking about flying away the surgery must have ended because other drugs put me fast asleep.

As you can tell from reading this everything did go well and, although the recovery was somewhat arduous, it actually went by very fast. I was back at work five weeks later and, yes, I still meditate.


Sorry about there being no drawings but it wasn't an adventure I'd planned.


  1. My god, what a story. And the image is astounding-- as you say, like a strange tree. So wonderful that you worked in the hospital that saved your life and your creativity. Also good to be lying next to another human being who loved you and got help for you.

    This is an extraordinary adventure into the mind, not just the brain. The image of the dragon is so powerful. Do you know if you are a dragon in Chinese astrology? Have you drawn the dragon? I'll have to back track through your pieces here to see.

    Thanks for sharing this part of your personal real life. I often wonder if the pieces I write about my personal life alienate readers. Now I know that it just might be the personal that brings us closer to one another. Living so isolated in the midst of a city neighborhood, but rarely venturing out, you are my neighbors, my friends, my family. Would that I could lie next to you in my time of great need.

    You once said you dreamed about me. I wear no make up, my face is naked now. When I painted the self portrait, I painted my face as if it were a mask. I used to paint on my public face, the models face--the painting is that public face taken to its most extreme. The artists mind is a strange and fascinating place to explore. Thank you for dreaming me with my naked face.

  2. What a horror. Oh, sweet Susan, I am sorry you had to endure all this. I am a bit gobsmacked and am at a loss for what to say but I wanted to say that I am so glad that you got through that difficult time and that this New Years day held no such drama for you.

    My experience is much more low key. But, I have an arachnoid cyst in my temporal lobe and have temporal lobe epilepsy without big seizures, just subjective state changes, and whenever I have tried to meditate I get headaches and so I quit meditating. My neurologist says that the cyst in my temporal lobe might be what makes me a list maker and a persona who searches for meaning. It is so nice to have your character boiled down to biology( said with a fair amount of sarcasm.;-)

  3. Not to be all snarky - but why not - but this whole thing was very Lovecraftian. Maybe it was the eerie lunatic MRI music imagery and the shot you posted.

    I'm quite glad that you didn't end up flying with that dragon on a permanent basis.

  4. utah - It took me a long time to decide to tell this story because it remains a very traumatic memory for my first reader, my husband. We all know we'll die one day but just not right now please and with grace perhaps a little time to say good-bye.

    I'm not a dragon but a dog in Chinese astrology but yes, I've drawn and painted a lot of dragons. Remember Baby Days?

    Whether you wear makeup or not, you are a beautiful woman. Dreams are the second bardo of existence.

  5. belette - You know I've come to understand there's no creativity without a touch of neurological dysfunction. We are very much more than what our reductive medical providers may describe. You're certainly living proof of that.

  6. randal - Hah! It was pretty Lovecraftian and a shock to learn the Great One had been lurking there all along. It just wasn't my time to fly :-)

  7. Oh my Susan.. this is one of those moments where I fall back on my Roman Catholic upbringing and exclaim ... Jesus, Mary and Joseph. We're in your husband's shoes as you went through this procedure, I'd be a complete and utter wreck.

    Thankfully, the fates were on your side as the condition was caught by your, apparently, light-sleeping husband and by your neurosurgeon boss whose diligence in determining the cause was exemplary. I also add that, like Randal, I'm glad the dragons in your mind didn't carry you off.

  8. Amazing story and picture Susan and I'm so glad there was a happy ending.

    But the empty bucket metaphor doesn't quite work for me.

    From what I've seen of your artwork, your perception, and your writing, your "bucket" has always been overflowing with wisdom, insight, and creativity.

    All of us should be so fortunate.

  9. Holy smokes....what a story. I am so glad everything worked out for you. Props to your doctor.

  10. spartacus - My husband was visibly shaken when he read this account but agreed it was good to tell the story for all its positive aspects. We took full note of the synchronicities involved in us having come out here and that the clever neurosurgeon had become a friend. It wasn't time to go.

  11. jim - I'm delighted to know you've enjoyed my small contributions to the, hopefully, greater good. At the deepest levels I think we all really are that fortunate but most don't recognize that.

  12. skippy - Thanks, and I'm glad too. Ed is a bit of a maniac but that's what made him a great doctor.

  13. Brain trauma has always scared me more than other things. The way you've written about your experience didn't scare me or make me feel queasy like I get when I think about that kind of thing. Still, I can only imagine the terror your husband must have felt.

    I'm incredibly glad that the doctors were able to take care of the problem and that you have recovered so beautifully.

  14. susan, I'm so glad I happened by tonight, to read this....I also am very happy all went well and you are on the frightening for you and alas, for your dear husband....yes , we never know, do we...

    hoping you are feeling better and better each day with no more scares of any kind! and happy new year :) I REALLY mean that!

  15. I meant to say and forgot, as I always do, that dragon....what an incredible vision is that? if you are ever feeling up for it, you really must draw her! wow, what a power symbol!

  16. lisa - I think we deal with what we must, whatever that is. The worst thing we can do is pre-plan our fears. My husband went through a lot worse than I did throughout the experience but he was great. When I left the hospital he couldn't find any of my hats or a scarf so he brought a tea towel which I wrapped like a turban for my walk to the car :-)

  17. linda - You just reminded me of the doctors asking me if I had weird visual or auditory experiences but I had no idea of what they meant by normal. It's entirely subjective, isn't it?

    I don't know about trying to draw that particular dragon. I don't have a piece of paper big enough.

  18. That was an amazing post, and thanks for sharing such a traumatic experience with us. That take real guts, kiddo.

    I'm glad it all turned out well. I've often heard of people who aren't comfortable with the MRI machines. With the new "open" MRI machines available, I've seen them advertised, but never saw one up close before.

    Like Randal said, glad you didn't fly away on a permanent basis. ;-)

  19. Wow. Incredible. So we almost wouldn't have had you here writing all these things and illustrating your fascinating life. Such slight margins of chance separate our treasures from our loses.

    But I have to say my favorite part of this was the part about your dragon dream. Incredibly cool. With titanium alloy scales, I'd be guessing... And interesting in particular because of the recurring dragons in your art.

  20. ME - Writing out this piece was more difficult for me than any of the others but I did and it sat thumbnailed on the screen for a while.

    The radiologists I know say the images they get from the tighter scanners are preferable but since the reality is that we have a lot of very heavy people, as well as some severely claustrophobic ones, the open MRI's are useful.

  21. steve - The worst didn't happen and I felt pretty blessed about the whole process, thankful too there were no aftereffects. It was like dodging a bullet.

    I have no memory of the angio embolization surgery but that second one came with very intense images. At that point I hadn't painted a dragon in years - and still haven't. I do still have the titanium and some deep grooves under my hair to remind me.

  22. susan, that's freaky... glad hubster got help for you when he did, and the procedure worked well :)

  23. Oh. My. God. What a story. And that picture! Wow! I'd like to say that I'm surprised that the hospital and your GP pretty much just blew it off, but I'm not. I've also learned the hard way that you have to be a very persistent advocate for your own health. Lucky for you that you had access to the neurological specialist. What a frightening experience for you and your family. Thank you for deciding to share it with us.

  24. suzi - The neurosurgeon arranged a special M&M (Morbidity and Mortality) Conference with the ER staff about all the signs they'd missed in my case. I just hope it helped someone else.

  25. I just came here via La Belette. All I can say is "wow!"
    So glad you are here writing this post....

  26. Thanks for sharing such an extraordinary experience with us. Maybe the prior yogi and inner calmness shielded you to some extent and helped also in the recovery. Its sounds miraculous!!
    Best wishes

  27. cassoulet cafe - I'm so happy you came by and left a note. It was a weird experience and I'm very glad to be here able to meet lovely people like belette and you.

  28. lindsay - You're right that it was a hard one to share - a little too close to home as I am now. The meditation and inner guru (angel, yogi, spirit) helped a lot.

  29. I've only just found this. I love finding astonishing stories like this, and told so well.

    I hope you are feeling quite wonderful now.

    And, have you ever dreamed of being a dragon again?

  30. joss - In the past year I've made a bit of a habit of recounting some of my experiences in Adventures Ink. They're illustrated just to add some amusement and provide some concealment for the poor writing.

    I'm fine now and always dream of dragons :-)