JANUARY 2001
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A Master of the Wired World?
I just got my author's copies of a new book from Financial Times Management (London), MASTERS OF THE WIRED WORLD: Cyberspace Speaks Out.
It's cold and blustery when I land at the charter airport in Minneapolis, and am greeted by Rachel, my kids Daniele and Jon, and the dog. It is so good to see Rachel again. I may be the rod, technically, but she is definitely my staff in life. I trust her judgment more than I can say.
"How are you feeling, sweetie?" she asks after we hug. "I've been so worried."
"Not too bad," I say. "A little jumpy. I get headaches. And every now and then I heard a bubble rising inside my head."
She winces at the image. The dog is going nuts to see me, and in his agitation races into the airport traffic. We cut our greetings short to rescue him from the taxi queue.
Rachel has scheduled an appointment that morning with Tim Rumsey, a doctor at the clinic she works at. I like the selection of Tim because he's a writer, too. He wrote a moving and well received memoir about his brother, Pictures from a Trip, several years earlier. I sometimes am envious of other writers, but it delighted me to have a doctor who knew what it was like to take an idea and make it work on paper. Tim was in the august company of physician-writers Anton Chekhov, John Keats, William Carlos Williams, Michael Crichton and Frank Slaughter. He plays a pretty good Chuck Berry-style guitar, too.
In his office Tim examines me generally. It is embarrassing when someone whose opinion matters to you pokes a finger up your butt, but I have cultivated the art of denial to the point where I breezily pretend it didn't happen. Tim plays along -- I imagine he sees all sorts of interesting strategies regarding butt-poking, and mine is not as clever psychologically as I imagine it to be.
Following the examination we sit at a little table and Tim lays out the possibilities, and they are similar to Rachel's guesses.
"You may have suffered an aneurysm," Tim says, "a dangerous bulging of a blood vessel in the brain. But the violence of the event suggests that if you had had aneurysm, then it must have burst. But if it burst, you would likely have died right then. Burst aneurysms are extremely serious."
We discuss the possibility of a stroke. I have a family history of strokes -- my father's mother had a series of strokes leading up to her death at age 77.
"A stroke is a possibility," Tim says. But he points out that I am awfully young for a stroke, and I have none of the usual deficits associated with strokes -- no paralysis or language problems.
Most likely, he says, I have something called a venous malformation. "It is a sort of relatively minor abnormality in the shape of a vein inside your head. It can be serious, but it is not necessarily serious. Many people live their whole lives with venous malformations with no ill effects, like a heart murmur."
I like the idea of a venous malformation, and I start manipulating the conversation to settle on that diagnosis. "So you think the idea of a brain tumor is out?" I ask him, with an encouraging smile. I am thinking about Dick's brain tumor, and how much he suffered before dying, and how he left the family in an emotional and financial heap. Brain tumors are a horror of mine, so I try to sweep aside that possibility, for Tim to rule it out right now and never refer to it again, as a favor to me, you know, writer to writer.
But he won't do it. "We have no reason to think there's any kind of mass in there," Tim says, not quite looking at me. I don't know what makes me shiver, the use of the euphemism mass instead of tumor, or the way he avoids looking at me when he says it.
"But just to make sure, I'm scheduling some tests for you in radiology."
I nod, but I have the feeling a baton has somehow been passed, that Tim desperately does not want to tell me I have a brain tumor, and is uncomfortable even broaching the topic without evidence on film. This is one job he wants to palm off on specialists -- people who don't know me, who deal with these things coolly and unsentimentally every day.
Friends don’t tell friends they have brain tumors.
So I make appointments at a Saint Paul radiology firm to get an MRI and a CAT scan.
Snow and ice are still on the ground as I drive up to the building, and sign in at the front desk. The info sheet said to wear no metal of any kind, no zippers, snaps or pins, or else change into a hospital gown. I am in no hurry to ever wear one of those stupid gowns, so I wear a jogging suit instead.
The other people in the waiting room are my first glimpse of people who have something funny going on inside. Some of them are attached to wheelchairs and drip tripods. Their attendants trundle them through the double doors and fill in the forms for them. Some of the people seem perfectly normal, flipping languidly through the magazines.
Some have their kids with them. Some of them are kids. Some of the kids are obviously not well. A red bandana covers the bald head of one little girl, who is reading a picture book to her baby brother. Another little boy stares off into space, a beany bag giraffe, or maybe it's a llama, in his lap.
It doesn't register with me that I am on the verge of becoming one of the sick ones. I am banking heavily on the venous malformation diagnosis, thinking it is the most sensible, least fatal possibility. My writer-doctor nearly guaranteed it, didn't he? (I don't know that hundreds of people die annually from venous malformations.)
Finally a technician escorts me back to the machines. Scanners are essentially computers, and they are the same putty color as friendly computers. Being digital, they are more flexible and smarter than analog imaging tools like X-rays. Instead of inputting alphanumeric characters and outputting print or data packets, like regular computers, they input body sounds or blood or bone, and output diagrams, animations, or films.
The machines are so perfect, and so precious, and so imposing, they remind me of the "inscriber" in the Franz Kafka story "The Penal Colony," an instrument designed to write the life story of its victims upon their bodies with a razor stylus until they understand everything there is to understand, to the deepest possible level, then perish from the information.
The MRI or magnetic resonance imager, is good for identifying differences in soft tissue, which conventional X-rays are useless for. The machine is huge, taking up an entire dimly lit room. At its heart it is a tube like a cannon barrel, with a tray on casters that they load you onto. Technicians cross your hands over your heart, as a mortician might, and they place a squeeze toy in your hand, in case you panic from the closeness. People who don’t think of themselves as claustrophobic nevertheless take tranquilizers before being inserted in the barrel like human cannonballs. Because once you are in, you are in for forty minutes, and if you twitch you screw up the images. It makes you want to twitch.
Inside, the cannon plays a sequence of strange musical fugues, like the spaceship music in Close Encounters of the Third Kind, or the percussive electronic compositions of composer Morton Subotnick. It is insect music, rhythmic, unmelodic clattering that bounces sound off your body parts, and records the densities resisting the sounds -- and then makes images of those densities, going deeper and deeper into the brain, or heart, or gut.
At one point they unload you from the barrel, inject a tracer into a vein, and load you back in and monitor the flow of the tracer through your skull.
I have since taken seven or eight MRIs, but the first is scariest because you don't know, going in, if you will tolerate it, or how long forty minutes seems like. I find I rather like it. With hands crossed on my heart and my face staring up, my only sight the reflection of my toes in the mirror, it makes me think I am attending my own funeral.
The next test is the CT or CAT scan, for computerized axial tomography. It is a smaller machine than the hulking MRI, more like a wide hoop that you pass through, like a floating magician's assistant. The CT scan is not as sensitive to soft tissue as MRI, but the color images it creates are more vivid, creating a colorful kind of topographical map of tissue. Its images have an eerie, arresting beauty. It is also quicker than an MRI -- I am finished in ten minutes.
Going through these two machines makes me feel that I have done something for myself. Perhaps they are my punishment, I convince myself, and my suffering is already over. If so, what a valuable lesson for me about life's vicissitudes. Now I have to process that lesson, put it behind me, and get back to my life.
Two nights later Tim calls me at home. I am watching the news. "Hi, Tim," I say cheerfully. What's up?" I truly think my head problems are a thing of the past.
"Are you sitting?"
"Yes," I say, frowning now.
"Well, it appears that the MRI picked up something -- some kind of a mass."
"A mass," I say, remembering the euphemism. "What kind of mass? Like a tumor?"
"We can’t say for sure. It's a possibility, but there are a dozen other things it might be. It could be some kind of cyst or bone deformation. We need to do another test to get a definitive diagnosis."
"Another test." I feel like I am being drafted back into the army, after I finished my term of service. It wasn't fair. There must be someone I could protest this unfairness to. "What test are we talking about?"
"It's called an angiogram. We put you on a table, then insert a pipette with a camera on the end inside you ..."
"Where? Where do you insert it?"
"In your inguinal region -- your crotch. Then we thread the wire up through your iliac artery, up through your aorta, and then up through the subclavian artery and inside your brain."
I say nothing about the pipette. I am still wording the protest in my head.
"Then we inject dye into your arm, and the dye goes to your head, and we take pictures of the shapes up there."
"To see the whatever."
"To see the mass."
The next day I travel not to the radiological firm but to the nuclear medicine part of United Hospital in Saint Paul. It seems that every step is taking me deeper into the system. Now I am told I have to wear a hospital gown. I check my sweats into a locker and carry the key, attached to a large plastic card, along with me.
I had read up a bit about this. Cerebral angiography was developed following World War I to deal with all the head injuries seen during the war. The idea is to view soft tissues in the brain that, without coloration, would be indistinguishable from one another.
I lie down on the table, and the team goes to work. The moment of insertion is painful, as the pipette presses into me. Once inside, however, I can't feel a thing as it threads up the length of me, like a coathanger trying to unlock a car door.
"We're going to release the dye now," the attending radiologist, a man who looks like he spends lots of time in the sun and sand, says.
At precisely timed intervals, the computer releases a jet of dye into the different parts of my brain. Each release is a flash of great warmth, and this warmth is matched on the computer screens above me with the image of the interior of my skull, and my poor, rotten, pewter-filled teeth grinning an X-ray grin.
It is a strange moment, seeing inside my head in real time as the liquid splashes along the pan and burbles away. I am struck by how tender the structures appear, like opening flowers. And I realize, for the first time in this whole process, how dear my brain is to me. This is my computer. The one I think all my thoughts with, utter all my words with, and feel all my feelings with.
This is the moment when the real weight of all that has been happening strikes me. Your brain is your soul, your life. You need it desperately. Without it, nothing else matters.
The radiologist is considerably less intense. He informs me, as the procedure nears completion, that everything looks normal. "I can't see anything like a mass up here, so I'm giving you a clean bill of health," he says. "There is something here, up against the bone, that looks like a gauze or spray of foam. That must be what the MRI saw. But I don't think it's anything important. Perhaps some low-level infection of the mastoid. I've seen this before, how it fools scanners into seeing it as a mass."
You can’t imagine the relief that statement gave Rachel and me.
When the test is over, I huddle with Rachel giddy as a kid. I passed the test. Passed it, hell, I aced it.
"I'll go home and feed the kids," Rachel says. "It'll take an hour or two for them to discharge you. Then I'll come back and pick you up."
Rachel leaves, and I return to my little locker and take my clothes out. How great it feels to slip back into civilian gear. I am muttering little prayers of thanks to nobody in particular when the radiologist wanders into the locker area.
"I need to talk to you. No, don't put your shoes on just yet. I've been on the phone with a neurologist, and he talked me into changing the working diagnosis."
I look up from my shoelaces and squint. "What are we changing the working diagnosis to?"
He sighs. "I fucked up. A tumor. Probably."
I stare at him, open-mouthed. He glances down at his clipboard. "I'd guess it's a meningioma, right there in the sagittal region. You can hardly see it on the frontal scan, I completely missed it the first time. But from the side you can see it very clearly, and it isn't small either -- it's 2.5 centimeters wide. See how it knocked out your venous drainage on one side. Kapow. What you had was a stroke -- pretty good one, too."
All day the doctor had been very breezy and fun. Now he looks tired and disappointed with himself. He shakes his head exasperatedly. "Damn. Don’t know why I missed it."
I can hear myself ask the next question as if from a distance. "So what's it mean?"
"Well, we don’t know that yet," he says. "It could be benign. We'll get you admitted and get some people in here to give us an idea what we have."
I stand up, feeling like a statue, ready to walk to the ward.
"No, you sit down," the doctor says. "I'll call someone down to wheel you up."
"I don't need a wheelchair," I protest. "I'm fine."
He puts his hand on my shoulder, to keep me on the bed. "Hospital rules," he says, smiling.
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