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Part VI

Allow me to introduce my neurosurgeon.  And talk about the various treatment “options” I faced.  I find it amusing that people would ask/comment that I had had “elective” brain surgery, but ask you’ll see, I found I had no choice but to treat my AVM.

Perhaps I should back-track and talk about how we arrived at brain surgery as The Choice.  All the websites and the research I’d done on AVMs thus far yielded 3 options on AVM treatment: embolization, radiation, or microsurgery.  Because each AVM is unique in size, location, and involvement of blood vessels, and because each patient is different in age, ability, and health status, no two AVMs can be approached in the same manner.  Some are completely inoperable, while others are relatively easily corrected with little side effects.  It all depends.  That’s where Dr. Zager came in.  Dr. Hart could diagnose me, and even tell me the options that were widely available, but it was Dr. Zager’s expertise that allowed him to look at my MRA and MRI scans and say I needed brain surgery.  He also said that embolization would be used in conjunction with the craniotomy. 

What I love about Dr. Zager is that while he is truly a skilled and great surgeon (look at me, alive, typing, working, etc!), he was also completely honest.  He said that because surgery was his specialty, he looked at the AVM from a surgeon’s standpoint, and also the approach of HUP.  He said quite candidly that if I’d gone to the University of Pittsburgh Medical Center, or Jefferson University Hospital, they would likely recommend radiation, aka stereotacticradiosurgery, aka Gamma knife, aka Cyberknife, because that’s their specialty.

And if I hadn’t trusted my surgeon, I had already read all about radiosurgery, and read enough to know it wasn’t what I wanted.  Not that I wanted a craniotomy, of course.  In radiosurgery, they aim a narrow beam of radiation at the targeted trouble spot (the AVM).  They do this over a period of time, depending on, of course, all the variables mentioned above, and hopefully, over the next few years, the blood vessels in question close up and the AVM disappears.  In order to be so precise with the radiation beam, they screw a metal frame into the head, ‘cause you’ve got to hold still even more than for an MRI, or they might zap the wrong blood vessels. 

The downsides to radiation are that results might not show up for several years; and meanwhile they’re zapping healthy brain on the way into the AVM.  Ouch.  Radiation has long-lasting effects.  That’s why a few treatments can close off an AVM over several years.  Unfortunately, any side effects or deficits resulting from the radiation may also persist for several years, and it’s not unheard of for people to develop new symptoms (from the radiation, not from the AVM itself) years after their last treatments.  Just ask a cancer survivors who has gone through radiation.  It changes the structure of the cells permanently, and can have chronic effects. 

Next up for consideration is embolization.  Essentially, the procedure involves threading a teeny catheter up through a groin blood vessel and into the brain (or wherever the AVM is), and inject a substance to close off the blood vessel where the AVM is, mimicking an embolism, as might occur during a stroke.  Sometimes they inject glue, or a plastic substance; other times they use coils to shut off blood flow.  As the blood vessels are shut off, depriving the AVM of its blood supply, it becomes smaller or goes away.  In my case, Dr. Zager wanted to do an embolization first, to shrink my AVM, which would then make it easier for him to do brain surgery.

Brain surgery, aka craniotomy, is exactly what you think it is.  Of course, no one could really prepare me for what the side effects and or consequences could be.  Just as each AVM is unique, so is each surgery, and each subsequent recovery.  Due to the size and location of my AVM, Dr. Zager could try to predict where I might have deficits, but it was little more than a (highly) educated guess.  My AVM lived its happy tangled life in my right brain, near the area of the motor strip controlling my tongue and face.  Therefore, surgery would mostly likely affect gross motor control in the left half of my body, maybe some balance issues, or more.  He did assure me that since the left brain is the hemisphere controlling language abilities, that I would not get aphasia; more likely it would be dysarthria, a speech impairment characterized by slushy articulation because the muscles or nerves of the speech-producing body parts aren’t as strong or able to produce the quick movements we usually need for speech.  That was a huge relief, actually.  Having studied Broca’s and Wernicke’s aphasia in my psycholinguistics and psychology classes, I knew I needed none of that.

Broca’s and Wernicke’s are so-named for the physicians who discovered people with these odd deficits.  In the case of Broca’s, Dr. Paul Pierre Broca discovered similar impairments in two patients who had lesions to the same part of the brain, specifically the  posterior inferior frontal gyrus of the left hemisphere of the brain.  Neither patient had fluent expressive speech, but both retained the ability to understand virtually anything said to them.  Of course, back in the 19th century one had to wait until autopsy to find out which part of the brain had been eaten away by syphilis or shattered by a railroad spike, but when he compared the two brains post-mortem, he discovered this region, and assigned the ability of fluent speech to it. 

Wernicke’s area, in the posterior part of the superior temporal gyrus of the left hemisphere, was discovered to be responsible for understanding speech, also by studying patients who presented with similar symptoms and deficits.  This is called fluent aphasia, because a person retains the ability to speak fluently, but the speech may be filled with jargon or just not make any sense.  For example, “I went to the breakfast, but it was too kleton for me to go diving.”  People also have tremendous deficits in the comprehension of speech. 

Having too much knowledge can be a dangerous thing, when one knows about aphasia and acquired language impairment.  I was very grateful my AVM was in my right hemisphere!

The fourth option, which was discussed but not considered in my case, was doing nothing, or “watching and waiting”.  For people with very small AVMs which are not causing any problems and not appearing to grow, this may be a good option.  For people with large, inoperable AVMs, or AVMs which involve major blood vessels, for whom surgical intervention would certainly endanger their lives, watching-and-waiting may be the only option.  In my case, we had evidence from my case history that my AVM was making trouble (causing tongue seizures), and had grown (the seizures were now taking part of my face, too).  So surgery with embolization was chosen.

I was given the opportunity to choose my own surgery date.  Because my AVM had not bled yet, and I was on medication to control the seizures, I was not in any imminent danger of a bleed.  Over time, the risk of a bleed increases, about 2% a year, but waiting a few months was not going to change my risks in any drastic way.  Of course, now that I knew what was inside my head, and what it was capable of, I felt like I was a walking time bomb.  I needed to have the AVM taken care of, so I chose June 21, 2004, giving myself a week to tie up loose ends after the school year ended, and the whole summer to recover.  All the logistics were figured out.  I needed no more tests until the actual surgery, so all I had to do was sit back, relax, and prepare myself emotionally for the reality of brain surgery.

Looks like you get another break from brain surgery today, as I need a chance to unload about today’s events, and a certain family member.  I’ll likely return to brain surgery tomorrow, but for today, I leave you this tidbit about my sister-in-law.  Welcome to the family. 

Oh, how people whistle a different tune when they want something out of you!  ‘Twas not so long ago that Mr. Apron’s sister, whom I will call “Bianca” spotted Mr. Apron wearing a silk bowtie given to him in memoriam by his allergist’s widow.  It’s a long story, but, briefly, Dr. Greene collapsed and died a few years ago, in the prime of his life.  Mr. Apron, who had had a close relationship with his allergist, being an allergic, sniffling Jew with chronic post-nasal drip, was deeply moved and wrote a tribute, which eventually found its way to Mrs. Greene’s mailbox.  She was so touched by the essay that she chose one of the doctor’s distinctive bowties and gave it to Mr. Apron because she knew he’d appreciate and wear it.  It’s due to Dr. Greene that Mr. Apron started wearing bowties in the first place.  So on this particular day Mr. Apron was wearing the prized tie in question, and Bianca remarked, snidely, “That looks like something Mrs. Apron would make.”

To us crafters, that can either be the ultimate compliment, or it can send us reeling back to high school when no one appreciated what we sewed, knit, collaged, or crafted, and thought we were just freaks, crudely copying fashion trends we were too cheap/poor/uncool to buy at the mall.  Guess which way Bianca meant it?

Fast-forward.  Bianca is now 7 months pregnant with her boyfriend’s child.  After a freak-out session at Babies ‘R Us where she and the boyfriend were send into shock by all of the baby swag, she promptly texted Mr. Apron and asked him if I, alleged creator of knock-off schlock and assorted kitsch smacking of home-made, would do her the honor of making her a diaper bag.  Dear friends, how could I refuse?

So tonight we journeyed down to the fabric store where I dropped $50 on materials to make her a custom diaper bag out of some admittedly really cool fabric.  As we’re driving back to where she left her car, Mr. Apron asks how long she’s planning on working until she goes out on maternity leave.  She casually mentions the due date, September 7, and the planned C-section, which will be scheduled the 39th week of gestational age, assuming the baby’s not ahead of schedule, which it looks like he might be because he was pretty big during the last ultrasound, etc.  She’ll be out of work till late October when she’s planning on going back 2 days/week and just doing light-duty paperwork for a while.  It’s not like she’ll be unloading stock with the lifting restrictions and pain.  Though she’s such a champ with pain, who knows? 

I’m sorry, planned C-section?  I checked with Mr. Apron after we dropped her off at her car. 

“Is there any medical reason she’s having a C-section?” 

“Nope.  Apparently Dr. Kim tried to talk her out of it, but you know Bianca.”

I quoted Mr. Apron’s father/mother/sister/self: “Nobody can tell Bianca nothing.”

Well, I’m sure Dr. Kim did her darndest, and then wrote the cover-your-ass note in her file: “Pt counseled on risks and benefits of elective C-section.  Pt. verbalized understanding of all risks, but insisted on scheduled C-section vs. vaginal delivery.”  I’m sure that’s how it read.  It strikes me as odd that someone who admittedly doesn’t like kids and “wasn’t trying” to get pregnant in the first place, yet now is so gung-ho about becoming a mother, might have considered that whole Get-it-out-of-me dilemma before getting knocked up.  I guess this was her solution.  And, to quote the senior Mr. Apron once again, “Once Bianca gets an idea in her head…” 

“You know,” I countered, “she won’t be able to pick up her own baby or lift more than 5 pounds?”  Mr. Apron also tried to talk her out of it.  Want to guess how that went?

So for all her tough talk about how great she is with pain and how the only discomfort she’s had during the pregnancy is having a bulbous belly – no swelling, no fatigue, no weird cravings, no feet turning into flippers – she’d rather have her abdomen sliced open and have to recover from a C-section than suffer the normal childbirth pains (or not – hello?  Epidural?) from a regular vaginal delivery.  

Mr. Apron hit the nail on the head, though.  This way, it’ll be on her terms.  And that’s the theme, folks, on her terms.  She can schedule the birth, schedule the pain and time off of work.  She can control when and if she likes my home-made items, and whether home-made is a good thing.  All I can say is, she’d better decide she likes the diaper bag she picked out come September.

I think I”ll give myself a break from brain surgery blogging for today.  Too much intensity might threaten my readership and burn me out on writing about it.  So today you get a peek into our weekend of home ownership duties.

Saturday Bob came over to build our closet.  He stayed pretty much all day till 5:30, with a brief break so he could run to a funeral.  He’s not quite done yet, but what we have now definitely is emerging as closet-like.  There’s 7 ft of railing where previously there was none.  There’s framing and some drywall and I even hung up 2 garments to make sure they’d fit in there.  We didn’t go “standard” depth because of issues of where to fit my gezunta Ikea dresser and making sure we had enough room between the closet corner and the bed to pass without turning sideways.  I got a little scared when I saw that the railing wasn’t centered depth-wise, and had to make sure a hanger would fit in there.  Thankfully, it does.  Bob will come back and finish all that stuff he knows how to do.  Then I can finish my Nova documentary, “A Closet is Born”.

This morning, having procured our ritual Sunday morning bagel sandwich breakfasts, we put on long sleeves, pants, socks, shitty shoes, and rubber gloves and proceeded to attack the poison ivy in the front yard.  Our neighbor saw us, gasped, came running out and asked, “Do you know that’s…?”  “Poison Ivy.  Yes, we know.  That’s why we’re dressed like this,” we said as we held up our gloved hands.  She ran into her house and came back out with some scary looking pesticide spray she had from last year when she used it on our yard.  Our previous owner, Mildred, was 95, or somewhereabouts, so I’m guessing our neighbor did much of the home maintenance for her.  Hence, she attacked the poison ivy for Mildred, chemically. 

I had hoped to be green, and use the chemical-free gloved-hands answer I’d found on the internet, but I’d also hoped Mr. Apron and I would be able to clip our hedges with the manual clippers.  While that was a rousing success the first time, the freaking hedges were sporting new radical sprouts within two weeks, causing Mr. Apron to give a sigh of relief and comment he would be borrowing his father’s electric clippers from now on.  I try to do the right thing by our planet, but it doesn’t always work out that way.  And today, we looked at each other, then looked back at our neighbor, and told her we’d be happy to try her spray.  As we came back from the dog walk this evening, Mr. Apron happily pointed our some already wilting ivy.  I couldn’t help but put on a menacing glare and challenge the plant to “Die, motherfucker”.  I hope it does. 

We had dinner on the front porch, making inane comments about how the street’s cars are parked different tonight.  The Pilot that was parked at the corner all week long has moved to the 2nd spot from the corner, but that Passat wagon is still parked backwards because the owners are douche-bags.  Finley sat calmly, tied to the railing until our back-alley neighbor came along, walking her Corgi-mix.  He started to go bat-shit, and I couldn’t imagine why.  He usually barks a little at passing canines, asserting his dominance over our small piece of turf, but this time he was lunging and growling.  Mr. Apron took him inside to cool off.  He whined pitifully from behind the door as we casually sipped our Cokes and swatted mosquitos.  Then we saw Mother. 

Mother is a light-colored calico cat who lives in the back alley.  I think her real name is Miss Grey, but she’s been nicknamed Mother because she, uh, mothered the latest brood of feral cats recently.  The neighbors whose yards she frequents got a pool together to have her fixed, so she’ll be Mother no more.  She hangs around those neighbors houses, I assume, because they feed her.  Her favorite activity, besides playing in the overgrowth of our next-door neighbor’s back yard, is walking Megan, the Corgi-mix.  When our neighbor gets Megan ready for her walk, Mother gets ready, too.  If you watch at just the right time, you’ll see Megan emerge from the side door, and Mother will come trotting along.  She follows at enough of a distance to say, “I’m a cat.  I don’t get taken on walks.  I’m an independent creature.  I shit wherever I please.”  Yet she’s always close enough to be the caboose of the train.  Today she lingered on our neighbor’s lawn after Megan had passed by, and Finley spotted her through the hedge.  We called to her after we’d shut the dog up, but she remained still, aloof in her feline ways.  “Is this the way you call a cat?” Mr. Apron asked, clucking his tongue and making kissy noises towards the hedge. 

“Yes,” I said, “but there’s a secret of callling cats.” 

“Yeah?  What’s that?” he inquired.

“They don’t come when you call them.”

Part V — Meds and Doctors

Now it may have seemed as if I was a very strong person, a person capable of understanding her diagnosis in a calm and rational manner. A person capable of impressing her neurologist with her understanding of what an AVM was. On the surface, that was me exactly. But given the path that stretched out before me, I fell apart. It was one thing to sit in an office with a medical professional learning and rationalizing and getting answers to 8 years of questions. It was entirely a different matter altogether to be leaving the hospital’s campus alone with a ‘script in hand with the name of a neurosurgeon and instructions to go get a consultation from him.

I stopped at a pay phone just inside the hospital’s ambulance bay and called Mr. Apron at work. In those days he worked 8am-4pm at a non-profit an hour’s drive away. On that day, however, he was downtown at some conference, learning about new products and services he would soon care less about when his position was eliminated due to his narcissistic boss who was sore he didn’t make mindless small-talk at the office. Chances are that I had taken an afternoon appointment at Dr. Hart’s, and Mr. Apron was still downtown. As I reached him, he excused himself from the exhibit hall to take my call, and, upon hearing how upset I was, left immediately for home. I explained the whole anatomy of the AVM, the prognosis, the next step, having to call the neurosurgeon, and the weight of it all falling squarely on my lap. I somehow managed to drive the 2 miles home; Mr. Apron joined me shortly, and we fell to tears holding each other. He still tells me today how filled with regret he is he did not come to that appointment. He’d been to every other appointment, watching as I stalwartly refused to show Dr. Hart with my hand how my tongue looked during a spasm. And he vowed never to miss such an important appointment again. True to his word, he’s been there ever since, from the neurosurgeon’s consult to the waiting room to the recovery. Every step of the way.

Dr. Hart delivered another pronouncement that day. I would have to be on medication. Hated, dreaded medication that would keep my tongue from doing flip-flops in my mouth. It was never those actual events that scared me so much as what they meant in an underlying sense. This is true of seizures in a general sense, too.  It’s not usually the seizure itelf which causes harm, but the potential of what could happen during a seizure that has docs worried, such as hitting one’s head on a counter, slipping in the bathroom, or losing control of a car.   In that way, I was very lucky; Dr. Hart didn’t turn me into the DMV. Many people who have seizure disorders have their driver’s licenses stripped from them for a period of time until they’re seizure free, anywhere from 6 months to 2 years, depending on the state. Since my seizures were focal in nature, and I never lost control of my driving faculties (imagine arm spasms while driving, or leg seizures) or my consciousness, he let me keep on driving. But the drugs made me very unhappy. I was on Carbatrol, an extended-release version of Tegretol, a very old anti-convulsant medication, which I had to take twice a day. It’s been around in some form or another for over 30 years. The joy of seizure meds is that they’re supposed to be in the body at very consistent levels all the time, which meant I had to take them exactly every 12 hours and have monthly blood tests to check my levels.

Neurologists sometimes expend much effort trialing different meds, experimenting with different levels. I was fortunate to be on such a low-dose of the drug, but I still noticed side effects. For one, Carbatrol interacted with my birth control pills, which I had been on since junior year of college due to incapacitating cramps and other female troubles which would take me out of class each month and confine me to my bed, crying and writhing in pain and clutching a heating pad. So not only did I have to give up grapefruit (Yes, Carbatrol is one of those weird drugs), but I also had to forgo my precious, sanity-saving birth control pills. Not to mention the inconvenience of having to use condoms, but we don’t need to go there. You understand how much that sucks, not to be able to use a method of birth control that was a wonder drug in so many ways.

Mr. Apron felt that pain acutely, too, and not just each month as he heated up my heating pad. Seizure meds are evil things. They’re maintenance drugs for a chronic condition, and most people with seizure disorders have to take them indefinitely. That means even if they undergo surgery and have the underlying epilepsy-causing brain matter resected, they may still be on anti-convulsants forever. This is because, as Dr. Hart explained, once the brain has learned to seize, it can never go back to not knowing how to seize. In other words, the risk of having another seizure, no matter how long it’s been since the last, will always be there.

To decrease my risks, Dr. Hart told me to watch out for my triggers. I’m not sure if other people have seizure triggers like mine, but I had noticed trends in the past 8 years, circumstances under which I knew I was at higher risk for a tongue spasm. One of these was being thirsty or dehydrated. Even though I usually brought a juice box to school with my lunch, I was just never one of those juice-box-drinking kids, especially with the 23 minute lunch periods we had in high school! In college, I started trying to remember to carry a water bottle and drinking throughout the day. But as my mother used to say as she’d pack me onto an airplane, unaccompanied, “Remember, what goes in one end must come out another.” Thanks, mom. I know where the airplane toilet is, and I know when my bladder is full. So in addition to remembering to take my water bottle each day, I had to make sure I was near a bathroom, not only to hide the inevitable tongue spasms, but also to drain the copious amounts of liquid from my body I was drinking to stave off those same spasms.

Other triggers he said were common to most people who have seizures include skipping meals, being sleep-deprived, and using alcohol, caffeine, cigarettes and other such staples of college-age life. “You’ll have to live the goody-two-shoes life,” he said. And I have. I have turned down every single alcoholic drink offered to me since that moment, except for at my own wedding, when I had six sips of champagne. I have cut back my caffeine to the point where I only partake in Excedrin when I have a headache (roughly the equivalent of 8oz coffee’s worth of caffeine) and when there’s no caffeine-free soda to be had (which explains my current addiction to Caffeine-Free Diet Coke). On those wicked hot summer days, I miss nursing an ice cold Frappucino, even if they do cost nearly $4. I hated explaining my sobriety to people, but at least I never liked coffee in the first place. I was never a big drinker, but from time to time, I’d like to be able to have a drink when the situation feels right, rather than stick out like a social pariah with my Diet Coke (sans caffeine, of course).

In addition to the lifestyle changes, there were the side effects from the medication itself. Keep in mind that I was on 300 mg/day, 200mg in the morning, and 100mg in the evening, a very low dose, compared to some people who are taking 1200mg – 2000mg to control their epilepsy, or they’e on various cocktails designed to reap the maximum benefits of one drug while minimizing the unpleasant side effects of them all. Still, I noticed side-effects that made me very resentful of the drugs controlling my life. I had a transient dizziness, most keenly felt when making sudden changes in altitude, like standing up from crouching, which is not very far to go when you’re only 5′ tall. I also noticed it when turning my head rapidly, as if my skull moved but left my brain behind momentarily. By far more troubling was the fogginess I felt in my brain. I had trouble recalling specific words, having the tip-of-the-tongue phenomenon all too often. My thoughts seemed to slow down. I realize I was very fortunate those are the only side effects I had at this stage, as many people are so heavily medicated as to feel sedated, constantly walk into things, and vomit regularly.

Still, I resented taking the pills and the clean lifestyle they forced me into. My pharmacy never carried them when I needed them, resulting in calls to other pharmacies in the area for those inevitably last-minute refills. I always quaked with apprehension entering the drug store each month, anticipating they’d be out of my pills yet again, and I’d start having tongue spasms all over again without them. They did stop my seizures, though. I had my last seizure in November of 2003, during the night. Mr. Apron lay beside me, sensing something was wrong. I had been asleep, and so had he, so I didn’t have time for my customary warning. I clenched my tongue in my teeth, futilely trying to get it to stop convulsing. This of course, resulting in horrible slurping noises as the saliva built up in my mouth. Mr. Apron, panicking, tried to sit up in bed to see what was wrong. I whipped my arm across his chest, pinning him to the sheets, begging him with my gesture to just stay put. He did, and when it ended, he confided his fear to me. I apologized for my reaction, but clung to him, willing whatever it was to just go away. Of course, that didn’t just happen on its own.

The name given to me by Dr. Hart was that of a neurosurgeon just down the street, a fine surgeon I’m sure, but friends and family begged me to find someone else. Somehow a chain of referrals bounced around the Delaware Valley, up to Providence, where my family lived, and even to Upstate New York, where I grew up and my family kept in touch with a neurosurgeon there. The goal now was to get second, third, twelfth opinions, to see all my options. My parents were saying that I could go up to Boston if I wanted/needed to, and have it taken care of at Mass General Hospital. The name I already had was of a man from Bryn Mawr Hospital, a smallish community hospital. We kept asking around. Somehow, two different sources independently returned to us with the same name. My mother-in-law extended her contacts and these sources both said, “Dr. Eric Zager”. He was a vascular neurosurgeon at the Hospital of the University of Pennsylvania. Big guns. And. AND. AND he was in network. I called for an appointment.

Robin, his inestimable secretary, set me up with an appointment, but told me I had to bring all my scans and records in myself, since I was not yet their patient and they had no rights to my health information under HIPAA. Huh? I obtained the kosher referral from Dr. Lander and set off downtown with a huge folder containing my MRIs, MRAs, and everything else billowing in the wind. This time, Mr. Apron came. He never missed another important appointment. Or an unimportant one, for that matter.

Dr. Zager explained everything as Dr. Hart had done, and went over my options. First, he told me I was very fortunate to have had any symptoms of the AVM at all. Most people never even know they have something so sinister lurking in their brains until they’re in their 40s or 50s and have a bleed. And maybe die. The other great part about being so young was that while my chances of having a bleed in my 20s were low, they’d increase roughly 2% a year. Recovery in one’s 20s from planned brain surgery is much quicker than in middle age, not only because a 23-year-old body is more spry and can heal faster in general, but because a 23-year-old brain is still plastic enough to learn new neural pathways and recover function more completely. I was old enough that my brain had developed basically adult functioning, but young enough that I’d be more able to recover those skills. I have since learned in speech pathology coursework that the 20s are really an ideal time to have trauma to one’s brain, if there is such a time. When one is a child, younger than five, mature language skills have not even cemented yet, and with brain injury, there’s a chance a child wouldn’t be able to learn further; whereas an adult can relearn more easily when the neural pathways have already been established.

I mention brain injury for an important reason. While with any surgery (stop me if you’ve heard this one) there is a risk of infection or complications, with brain surgery this issue is compounded. The body has gone to elaborate lengths to keep the brain isolated in in its little skull bubble. There are 3 protective coverings — meninges — even before the skull: the arachnoid mater, the pia mater, and the dura mater. Even inside the brain, there is a blood-brain barrier which prevents most infections and even medications from entering the brain via the blood vessels. Simply put, the brain wants no intruders, from the inside or the outside. As Frank Vertosick mentions in his book, “When the Air Hits Your Brain,” the number one rule for cracking open any noggin is, “You ain’t never the same when the air hits your brain”. Another of his axioms: “The only minor operation is one that someone else is doing.” Any sort of intervention when it involves the brain is a daunting and scary prospect, even when you put your brain in the capable hands of Dr. Zager.

Part IV — What’s wrong with me?

My seemingly endless parade of referrals and doctors and tests started in January with my first visit to Dr. Lander. In the same easy manner he uses to brush off Mr. Apron when he insists he has oral cancer for the 3rd time in a year, he listened to my symptoms, and said, simply, “This sounds serious. I’m sending you to a neurologist.” He gave me the name of a practice down the street, which is how I began learning all about the fabulous private-payer health care system our country is putting up with. At the first visit, I was informed that the script with the doc’s name on it was not actually a real “referral”, even though I had truthfully been referred. Thankfully Dr. Lander’s office was open and they faxed an HMO referral right over. I then met Dr. Hart.

My feelings towards Dr. Hart are mixed. My feelings about neurologists in general are mixed. They seem to me to be neurosurgeons without the cutting, who compensate by performing a careful dance with drug levels, trying and tweaking different dosages of meds to balance side effects with symptom relief. My discomfort with Dr. Hart stemmed from his oversized ostentatious office furniture – huge mahogany-looking bookshelves and a desk, with two cramped consultation chairs for anxious patients to shove themselves into. He then relentlessly insisted I not only describe my tongue spasm, but requested that I demonstrate with my hand what my tongue looks like during an episode. For all my running to various bathrooms when I would feel a spasm coming on, I can’t say definitively I ever looked in the mirror. From my friends’ initial reactions when I showed them my tongue back in 9th grade, I knew that was nothing I cared to see. I used a mirror only when my tongue was done writhing to confirm that I had regained control of all my muscles. Maybe to a neurologist, being able to see or experience the seizure in some way enhances his understanding of the specific type of seizure. He could deduce from my description that it was no grand mal or absence seizure. For one thing, I never lost consciousness. For another, it was concentrated to a loss of muscle control in one part of my body – my tongue, and recently, the left side of my face. I still don’t know how pressing me to show him my best impression of my seizure helped him diagnose it at all. Especially seeing as he just packed me off for an MRI anyway, leaving the diagnostics to the radiologists.

MRIs are fun little tests. For those of you who have never had the pleasure, I am happy to recreate my experiences with the MRI tube. From what I understand, there’s a huge electromagnet which revolves around the human. Much like the motors we made in 11th grade physics class by wrapping 2 L-brackets in copper wire and sticking a axle in the center that rotated with the magic of alternating current introduced via a battery, this huge electromagnet causes all the hydrogen atoms in the water in one’s body to line up their negative and positive poles (they act like little magnets). The charge they give off is picked up in a radio frequency by the scanner. The resulting scan looks like thin slices of brain (or whatever body part you stick in there). The patient’s experience is interesting as well. First I had to take off all metal I was wearing, in order to keep on my civilian clothing. This required careful planning as I dressed that morning. I found an elastic waist skirt, so I was zipper-free, and a non-underwire bra. I took out all hair clips, and gave my watch to Mr. Apron, and I was set to go. Then I lay down on a cold skinny table (no wonder heavier people have anxiety about MRIs). They handed me the “emergency signal”, a squeezy bulb I could squeeze in case of panic attack, pulled down a white cage over my head with an angled periscope mirror so I could stare down towards my feet, and told me to be still. They’re not kidding. They don’t even want eye movement or heavy breathing.

It’s actually very similar to the corpse pose in yoga, which always makes me fall asleep. It would be no surprise then, that I fell asleep in every single MRI tube I entered, if it weren’t for the fact that the sounds emanating from the machinery are like having six angsty teenage boys beat on trash cans using golf clubs. Oh, and the trash can? It’s surrounding your head. Yet I fell asleep, each and every time. I can fall asleep anywhere, on almost any surface – floors, couches, footstools, cars, buses, auditorium seats, etc. As long as I can rest my head, I’ll be fine. In addition, I usually took the 7:30am appointment so I’d miss the least amount of work, and I was half-asleep to begin with.

Another test I slept through was the aptly named sleep-deprived EEG. This was scheduled for 7:30am as well, and we had arrived around 7:00am, due to Mr. Apron’s chronic earliness. They insisted the lab didn’t open till 9am, but I somehow had proof of my appointment, so we were let through. My tech’s name was Maria Lusi, as I read from her name badge. She explained an EEG in the following way: “It’s like an EKG, but of your head.” This would have been fine, had she stopped at that. She felt it necessary to repeat this tidbit of information several more times till she was sure we had as much understanding as her instructors had imparted to her in EEG school. In truth, an EEG, an electroencephalogram, is an EKG of the brain. It measures electrical activity via carefully placed electrodes on the scalp. For seizure disorders they love to let you sleep through the test. Even if you don’t have a seizure during the test (they’d just die of excitement), they can sometimes see atypical “sleep spindles” or other brain waves which indicate and can help to diagnose different types of seizure disorders. I had a lovely nap with my head covered in electrodes that smelled like grapefruit.

I also had an MRA, a magnetic resonance angiogram. This differs from an MRI because it measures blood vessel activity instead of soft tissue (brain matter, internal organs and such). Looking at the scans, the MRA is most telling with regard to my AVM. My EEG came back completely normal. Looking at the MRI as a lay person, I could tell that the left and right sides were mostly symmetrical, except in one small area. However, I couldn’t tell what was going on exactly. I’m not sure Dr. Hart could, either, which is why he sent me back into the tube for the MRA. As we met in February in an exam room so he could show me my scans on a light table, he pointed out that shady area on the MRI, and told me about this thing called an AVM: arteriovenous malformation. (NB: if I didn’t describe the testing clearly enough, hang on for the AVM description – this time I know my shit.) He explained that I had a jumbled bird’s nest (2x3cm) of blood vessels that did not form correctly, probably during fetal development. What usually happens is that blood leaves the heart freshly oxygenated through huge arteries. It’s been propelled at high pressure so it can reach the far corners of the body and deliver oxygen to the tissues and organs. As it reaches various parts of the body, it splits off into smaller arterioles, then to capillaries, where the oxygen exchange actually occurs through the thin walls of those blood vessels. Then, the blood has to get back to the heart to be reoxygenated, so it begins this journey by passing from the capillaries into venules, and finally veins. It reenters the heart through the vena cava and begins the journey all over again. Arteries and veins are very different structures. Arteries have thick walls to withstand the high-pressure of the blood gushing from the heart. Veins have thin walls because they’re transporting lower pressure blood. The series of connections between them is essential to proper oxygenation and blood flow. Now, back to my AVM. That mass of spaghetti I saw on my MRA – called a nidus – is the result of an artery connecting directly to a vein without all the subordinate blood vessels to mediate pressure. The seizures were occurring because the brain was frankly pissed off at the AVM, which caused an “electrical disturbance”, resulting in a seizure. The reason they stayed localized to my tongue and, later, my face, is due to the exact location of the AVM. It rested at the back of my frontal lobe, almost exactly on the motor cortex in my right hemisphere. This motor cortex contains a representation known as the homunculus, which shows a disproportionately figured human body. The areas which are larger represent the fact that more of the cortex (more “brainpower”) is devoted to controlling them. In the left hemisphere there’s a corresponding sensory cortex to represent how much cortex is dedicated to sensing different body parts. In my case, the AVM sat right near the part of the motor cortex dedicated to tongue movement. As best we can guess, it had grown some during my lifetime and had started to involve the left side of my face.

The symptom in and of itself was not dangerous, not warranting more than pharmocological intervention, but it was the dangerous potential of the AVM that had me sprinting to yet more doctors. The AVM was a time-bomb. Though we wouldn’t know for sure that it would ever happen, that high-pressure blood coursing through the vein had the potential to burst, hemorrhaging blood all over my brain, leaving me dead or severely impaired.

Many people who embark on a journey towards finding the answer to “What is wrong with me?” find a sense of closure when they have a diagnosis in hand. It helps them make sense of their symptoms and begin to work towards treatment, if there are treatments to pursue. As I listened to Dr. Hart explain all this, it all made sense. I understood about the blood vessels and the motor cortex from my biology and psycholinguistics classes in college. I felt huge relief at having a name for my problem, having something I could Google, being able to seek out a support community, and being able to start towards treatment. I had an aha! Moment in that office, staring at the light box and the slices of my brain. Medical “professionals” such as Maria Lusi like to have their patients verbalize understanding of a procedure of a test they’re about to perform. Likewise, real doctors like Dr. Hart like to see that patients understand the frightening diagnosis they’ve just been handed. That appointment is the first chance to ask questions, the best opportunity to make sure you really understand what is wrong with your body before you go home to and scare yourself. I showed Dr. Hart I understood what was going on. I still don’t have a firm grasp on what a seizure is, other than the neurons getting pissed off at some disturbance in the body/brain, but I was so enthusiastic about examining my scans and understanding the AVM that I surprised him a bit. “Tell me again what it is you do?” he asked. “Oh,” I replied, “I’m a preschool teacher.” Don’t judge me by my day job, dude.

Diagnosis on hand, I started down the journey towards surgery, one day at a time.

Part III — the Magic Word

I continue the story of how we met, and how I finally ended up at a doctor who told me what I needed  (but not necessarily wanted) to hear.

Shortly before the jdate sparks started flying, a friend of mine from Providence moved to a suburb of Philadelphia to seek his fortune. Jeff was crashing on his brother’s couch near Ambler until he found his own way. Having been out to see Jeff once before, I welcomed this excuse to make a three hundred mile sojourn and meet the mystery boy while ostensibly being under the guise of chaperone-ship from Jeff. The cuddly gay man was going to protect me from the 135-lb beanpole, should he prove to be other than the sensitive man his profile portrayed him to be. The date for a visit was set for the last weekend of April 2003.

My packing list for this voyage, as inscribed in my journal:

To bring to Philly:
cookies/baked goods/matzah ball soup
appliance bulb (for Mr. Apron’s defunct oven light)
books for Mr. Apron (for the cross-state lending library)
$ for gas, tolls
AHWOSG (the Dave Eggers book “A Heartbreaking Work of Staggering Genius, which Mr. Apron had lent to me)
CDs & CD player & cassette adaptor (Mr. Apron burned CDs for me but I had only a tape-player in my car)

Fortunately, my brief tenure (7 days, two hours) at a $9/hr data entry job (typing up mortgage deeds) was terminated when I literally fell asleep from sheer boredom at 11am despite large quantities of Dr. Pepper. That week, I had also received my rejection letter from Teach For America, dashing hopes of gainful employ in the immediate future. Pittsburgh thus holding no real occupational prospects on the horizon, I felt a new freedom as I set off across the state on the first of many trips down the well-worn Pennsylvania Turnpike. There ought to now be a rest stop named after us, for the quantity of tolls we have donated to Penn DOT. Eleven dollars and sixty-five cents in tolls later, plus another $175.00 for a certain eager lovebird’s first speeding ticket, I arrived at Jeff’s brother’s apartment The next morning, after a surprisingly restful sleep, Jeff and I set off cavorting around the northern suburbs of Philly, hitting the malls, the hair salons, and getting psyched up for the meeting that evening. Mr. Apron’s optician schedule at Sterling Optical was such that he faithfully worked every Sabbath, and in turn was rewarded with a Sunday-Monday weekend. That night, after he closed up shop, Mr. Apron headed home to canine Finley to await our arrival at his apartment in Wayne. Arrive we did, in my cute little PT Cruiser. We ascended to the third floor semi-loft, met Finley for the first time, and, oh yeah, Mr. Apron. Things were a little tense as Mr. Apron shoved antibiotics down Finley’s throat and I stood up from petting the dog and realized I now had a film of grey fur on my formerly clean light tan “I love Buns” t-shirt. Nonetheless, neither of us was a 60 year old Chinese woman and that counted as a success.

Jeff had invited two friends to join the party to ease the presumed awkwardness, so we all set off for the King of Prussia Mall, the largest mall on the Eastern Seaboard (second nationally in size only to the Mall of America in Bloomington, Minnesota). In the parking lot of Dick Clark’s American Bandstand Restaurant (featured prominently in the 2002 Michael Moore film “Bowling for Columbine”), the other members of the party – we’ll call them Alex and Schmalex – pulled up and the five decided unanimously NOT to eat at Dick Clark’s American Bandstand Restaurant. Because Mr. Apron knew the lay of the land better than the others, he led the caravan back to Wayne, back to the Main Line, and found Minella’s Diner, a greasy spoon reminiscent of a time when Wayne was an affordable place to live and restaurants weren’t called “Spice” and “Nectar” and “Pomme de Foie Gras”. Though he committed the vegetarian solecism of ordering eggs and Canadian bacon for dinner, I nonetheless saw the man for who he was, not what garbage he put in his body.

The next 24 hours were filled with pre-recorded broadcasts of “Cookin’ Cheap”, Mr. Apron’s favorite cooking show, visits to South Street, where I no longer felt like a freak, dining at a vegetarian Chinese restaurant, the likes of which I had never eaten before, and a trip to the Mutter Museum, full of medical curiosities, oddities, and the best of the grotesque, including giant colons, two-headed turtles, and a human horn. Mr. Apron’s wry wit kept me laughing the entire time as we zoomed around town in Mr. Apron’s 2001 Herbie the Love Bug. On the way to return me to Jeff’s brother’s apartment, I almost started crying in the car because the weekend of wonder and validation and joy was coming to an end, and all that spanned in front of me was the bleak, jobless world of Pittsburgh.

Part IIIb “How I Finally Got a Job Teaching in the Philly Area and Could Justify Moving to be Closer to Mr. Apron”

I spent a year in Pittsburgh, finishing up my college degree and trying fruitlessly to secure full-time employment. It was a year of working as a receptionist of a comedy club 21 hours a week for minimum wage, answering phones, messing up the ticket-ordering applet the owner had created, and being harassed for being Jewish. Plus TV. A lot of TV. When the phone wasn’t ringing, I would watch the back-to-back tear-jerking triumvirate of A Dating Story, A Wedding Story, and A Baby Story on TLC. Now you know why we still don’t have cable. I tried to get full-time work. I just couldn’t believe that a college degree from a top-tier university would be worthless. And yet it most definitively was. I was rejected from mall jobs, ignored by non-profits, and told by photographers looking for assistants that I was too well educated. Finally a temp agency hired me for the ambiguous “$9-10/hr to start, administrative” job. As I said, I lasted 7 days. The job had something to do with mortgages, though exactly what, I still don’t know. I knew that we took pre-printed packets of papers on which someone had highlighted key bits of information, and put those numbers or words, or descriptions in a computer application. At the end of this, we pushed submit, and it printed out in some remote corner of the office. Walking to the printer was as exciting as it got. Then someone who was paid maybe $11/hour looked them over for typos and sent them back. Once I patiently sat as a supervisor carefully showed me a print-out I had not generated to point out all the typos and mistakes I had not made, so I could learn from them. I was not fired on that Tuesday I fell asleep; my “assignment was terminated”. Though I had no job and no prospects, I had that visit to Mr. Apron to look forward to.

Once we had met and fallen hopelessly in love in person, it was clear I needed to focus my job search on the Philadelphia area. That way I could justify a move out here and still have a back-up “just in case”. Because a girl needs that. A modern feminist doesn’t just pick up and move out to be with a boy. She has a job in place first, an apartment of her own, and a plan.

Well, I received as many rejections from Philly jobs as I had thus far in Pittsburgh, with one exception. I faxed over an application on a Monday to a small Quaker elementary school that was looking for a preschool assistant teacher. They called me on Wednesday to invite me to interview the following Monday. It just so happened I was going to Baltimore for my cousin Paul’s 100th birthday (June 6, 1903. send him a card — this year was 106) that weekend, so I took a small detour up to Philly, crashed with Mr. Apron, interviewed Monday morning, and had an offer by that afternoon.

I moved out here August 1st,2003, to a “jr 1-bedroom” apartment in a 100-year-old house that had been converted to apartments and stripped of all personality. And grass. My landlord did not enjoy the finer aspects of property maintenance, so he had taken it upon himself to pav every square inch of the lot on which that house stood. Need I mention we had ample off-street parking? There was even a defunct pick-up truck in the back lot with weeds growing out of the bed. We had some pictures of Finley staring at us pitifully from the bed of the truck, asking why we put him in there.

All was sprinkles and rainbow balloons. I was employed, albeit on a meager salary, and courting my future husband. We went hiking in the surrounding state parks, shopping on the Main Line, and took trips into Philly to see plays and walk around the various neighborhoods of Manayunk, Chestnut Hill, South Street, Old City, and Society Hill.

One evening, having walked the entirety of South Street, we approached Penn’s Landing, which at that point overlooks the Delaware River, and all the romantic refineries of southern Jersey. I remember the wind whipping up around us, perched so high above the riverfront, or maybe that’s the way I want to remember it because of the way I clung to Mr. Apron, my face buried in his bony chest, as I had a tongue spasm. It was one of exactly 2 I had in his presence, but this was the first, and the scariest. He had no idea what was happening to his girlfriend, to this child he’d courted from across the state. I’m sure I gave him my standard I’m-not-going-to-be-able-to-talk-for-one-minute spiel, but I don’t think he bought the I’ll-be-just-fine line I also delivered. Afterwards, we stood face-to-face (or face-to-nipple-line, due to our height differential), and we talked. He asked me to go see a doctor, his doctor, the octogenarian whom his whole family had trusted for 3 generations, from his great-grandmother who put on make-up for his housecalls to his finicky never-trusts-any-doctor sister. You recall I had heard this before, and that I kind of knew something was wrong with me that a doctor needed to address. And you also recall that I had successfully (open to interpretation) ignored, suppressed, and hidden my spasms for 8 years. What was different about this time? Mr. Apron said please. He looked at me with caring eyes, eyes that had only known me six months, and literally said, “Please.”

When I think of that word, of “please”, I think first of little children being cajoled into saying the “magic word” to seal the deal on whatever junk food, carnival ride, privilege or playdate they’ve requested. I think of the value we place on not just politeness, but on how that word allegedly unlocks these dire appeals for an ice cream sundae. I think also of the etymology, because I’m first and foremost a linguistics nerd. I think of plaintive “pleas” made before a judge, begging for mercy or leniency, entreaties for action. That’s the way Mr. Apron asked me to see Dr. Lander. After 8 years of hiding, ignoring, and denying, I picked up the phone and made the call to see Dr. Lander, the call that would set off a series of events bringing me to and beyond brain surgery. All because he said, “Please.”

To this day, “please” remains a magic word in our home. It signifies a change in tone when we’re arguing, discussing, or going over important things. When Mr. Apron and I talk about career change, or baby-making, or making important phonecalls, or mailing important packages, all it takes is for the other to say, “Please”. It cuts through the excuses, through the procrastination, and gets right to the meat of the matter. It says, simply, “I need you to do this because I love you and this is important to both of us.” It really is a magic word.

 Part II: the back story

It’s important to see how Mr. Apron came into my life because he was so instrumental in supporting me on my journey into and out of brain surgery and recovery. 

Of course we met on jdate.  Two stunningly attractive, Jewish, fresh-out-of-college BPs (beautiful people) with Bachelor’s degrees, unfulfilling jobs in retail and entertainment, respectively, and a touch of loneliness.  Respectively.  I had listed my profile in July of 2002 out of boredom while at a summer architecture program with nearly unlimited access to late-model computers with high-speed Internet access.  I used jdate mostly for “baiting”, a favorite pastime of recent Brandeis graduates looking for other Brandeis graduates who are pitiful enough to have profiles on jdate.  Mr. Apron posted his profile (RoyalTenen) in August 2002 after much urging from his best friend, David.  David needed Mr. Apron to create a profile so that he, Mr. Apron, could view all the women that he, David, had “hot listed”.  In February of 2003, Mr. Apron updated his profile, allowing jdate to market RoyalTenen as a highlighted user on the left part of the screen.  While the handle RoyalTenen may have referred to the movie of the same name, it immediately caught my eye because of the explicit similarity to my maiden name.  And so I clicked. 

One cannot say the rest was history.  I read and reread the profile of the seemingly incongruous RoyalTenen, viewed a picture of him sniffing sunflowers, and I took in his location: Wayne, PA.  Now, I knew that from Pittsburgh, where I was stationed, to Philadelphia, was a good six-hour drive clear across the state.  I did not, however, have the slightest clue where Wayne was, but I figured it had to be closer than Philly.  It is, by approximately 18.73 miles.  At this point, I was optimistic, and didn’t do any driving calculations until later.  I vacillated about contacting this strange man.  She consulted with trusted advisors from Brandeis, and finally took the plunge. 

Now, like many Brandeisians who are on jdate almost exclusively for baiting (excepting those who find their B’sherets there), I was too cheap to pay for membership from jdate.  I was allowed to ogle, to “hot list” cute boys from Muhlenberg, and to reply to others’ correspondence, I she could not initiate sweet nothings with RoyalTenen.  So I subverted the jdate paradigm, and craftily embedded my e-mail address into the text of my profile, where it stayed, at least for 48 hours, when those evil jdate higher-ups found it and deleted it.  I “hot listed” Mr. Apron, which would send him a high-priority alert that he was being stalked.  Curious about which bitchin’ Ashkenazi broad had discovered his true hot-ness, Mr. Apron took the bait.  And found me. 

Over the course of that weekend, I was snowed into a Shabbat across America with a vegetarian Chabad-Lubavitch family in the Squirrel Hill neighborhood of Pittsburgh.  Mr. Apron was snowed into the third-floor semi-loft attic apartment at in Wayne, PA.  He vacillated and consulted with his trusted advisor David.  And took the plunge.  Mr. Apron e-mailed me. 

Dear A*****,
What's happening?  This is Mr. Apron, or "RoyalTenen" from the "Jdate Social Misfit Kleenex Klub."  Flattered and all that I've made it to your undoubtedly prestigious Hot List, as usually I have little trouble in making it onto other peoples' list of a different nature.
So, what's the deal, Lady?  Why Pittsburgh?  I mean, is Filthy McNasty's really that great of an attraction.  In Philly, we have a restaurant called "Rotten Ralph's"-- I mean, same idea, you know?  So we don't have Carnegie Mellon or that big, stupid boat that goes cruising along whatever river it is that old people get drunk on... whatever, you know!
So... tell me about yourself.  I will read what you write and write back, making frightfully witty comments about your dog's name and the way you paint your nails.  And you can ask me questions about myself.  Guys just love that shit.
--Mr. Apron

And thus read the first in an unending series of e-mails, which grew exponentially longer, from an innocuous 2k, to 9k, to 14k, and one might say it stabilized at the length at which Mr. Apron and I started to develop carpal tunnel and glazed eyes after typing and reading each e-mail.  At this point, the move to AOL’s ubiquitous Instant Messenger was suggested, and we eagerly accepted the prompt.  Endless nights reached towards 3am, necessitating that I upgrade to a more expensive ISP, and resulted in Mr. Apron’s falling asleep at work. 

By this point, packages of old-fashioned type-written notes, and old-fashioned home-made pumpkin bread had been flying back and forth between Pittsburgh and Wayne with alarming frequency since approximately 3 days after the first fateful e-mail.  So intuitive were the visceral feelings we felt ourselves developing, so comfortable was the trust we already shared, that Mr. Apron sent me his childhood Quilty Piece.  The QP, as it is now called, is a grayish rag that used to be a baby blanket.  Not the usual mix-tape or bouquet of flowers…While I was at first greatly puzzled by this gesture (honestly, it’s still an enigma), and my royal advisors quickly determined Mr. Apron was some sort of fetishist, I  nurtured this burgeoning relationship, unsure of the gray, sour-smelling rag, but growing increasingly sure of the man who sent it to me.  One day, while carefully removing a return-address label from an early package from Mr. Apron in preparation for its reuse in a missive to him, I absent-mindedly flipped over the rectangle of paper.  It was an incomplete business card containing partial personal information of none other than Mr. Apron.  Wouldn’t it be funny, I mused, if the To: address label was written on the back of a complete business card?

You know it did.  You know I now had his carefully guarded telephone number.  And you know I finally got up the courage to call the number on that card.  While it led to the home of Mr. Apron’s parents, and not the personal cell phone of Mr. Apron, it nonetheless opened the door for us to let down our guards about our anxious telephone voices.  We were able to venture into a world with no “delete” key and no “send” button.  The late-night Instant Messenger conversations gave way to late-night/early morning (Cingular’s free nights start at 9pm after all) telephone conversations, with me curled up on her yellow loveseat cradling the portable until the charge ran out, and Mr. Apron faithfully talking to me for the duration of his return trips from visiting David in New York City. 

By April, it had quickly become clear that this budding relationship had come to a head.  I needed to meet Mr. Apron in person, if for no reason other than to establish that neither of us was a 60-year-old Chinese woman.  In the end, all Internet relationships have the potential to be skeevy.  In reality, we needed to know if the other was as wonderful, compassionate, witty, and articulate as with the written word.  Or, in other words, “nice, smart, and funny”.

Part I:  From the Beginning.

I originally started this blog to find a space to vent about work and our impending home-ownership travails.  I had also been guest-blogging on Mr.Apron’s site and needed to find my own URL.  Now that the school-year has ended, and I have two solid weeks of office time with no children before we gear back up for our short summer session, I’d like to embark on a new journey with you. 

Back on June 22, 2004, exactly five years ago today, I underwent brain surgery at the Hospital of the University of Pennsylvania to correct a congenital defect in the arteries and veins in my brain.  Today I celebrate my fifth “Brainaversary.”  I have always wanted to write about this experience.  Let me correct that – I have always needed to write about this experience.  Heading into the hospital, I swore to myself I’d remember and write down each detail, so I could never forget.  Well, as anyone who has ever had an extended hospital stay can tell you, time just morphs into this indistinct glob of hours and days and cranial nerve tests and orientation tests and blood tests and horrid meals.  Due to my complications, I could not write down my thoughts as they were occurring.  Mr. Apron, who was then “only” my boyfriend, kept my friends and family updated through e-mails on his infrequent breaks from my bedside.  There was no Twitter, and blogs were just in their infancy, or I might have been able to create a blog like Katie did here: .  Alas; I was cut open too early for real-time blogging or twittering, but not too late to fill in my story now. 

 I was always the healthy child.  I never had ear infections, never took any days sick.  I had perfect attendance for 5 years running in elementary school, racking up a pile of those cheesy cardboard certificates year after year.  While my brother suffered to find a solution to his eczema, and my family struggled to keep his asthma and allergies under control, I was healthy.  When my sister needed glasses in 3rd grade and developed a milder form of asthma, I remained healthy.  That was my role in my family.  No cavities, no broken bones (yet), no cause for alarm. 

 I can’t recall the first seizure, but I remember one of my earliest ones, when they were still small enough to hide in public.  I was eating lunch with friends out on the softball field during one of the last days of 9th grade.  My tongue began to twitch, and I had to put down my bagel.  I’d noticed some beginnings of a pattern to when these tongue spasms started.  It was often when I’d neglected to pack a drink with my lunch, or neglected to drink it.  But these early spasms were so small, so brief, I only had to close my mouth, stop eating for a while, and then I could return to lunch with my friends.  Another lunchtime, this time in the cafeteria, I warned my friends I wouldn’t be able to talk for a minute – no further explanation – and I would be okay.  My friend Moira asked me to show her, so I opened my mouth.  They were greeted by a writhing, pulsing tongue muscle.  “Gross! Put that away!”  And I did.  I never showed anyone again. 

 Throughout high school, and college, when I’d feel a tongue spasm coming on, I’d run to the nearest restroom.  It would only be literally a minute, and then my tongue would stop writhing.  I’d clear my throat, do some tongue calisthenics to make sure I had control over it again, and re-enter society.  I was very fortunate I had warning.  I could feel this slight tickle in the back of my throat, which would make me swallow hard a couple of times, and I’d have ample time to run away.  I’m hesitant to call my warning signs an “aura”, which is what many people with epilepsy experience before a seizure.  It usually manifests as a perception of a light, a smell, or strange thoughts.  Mine, I believe, was more physiological.  Nevertheless, it allowed me a short getaway time. 

 I’ve run away from theatre rehearsals, bassoon lessons, shopping excursions, lunch times, and many social situations.  In the rare times I’d get “caught” with no known bathroom to run to, I’d tell my companions, “In a short time I won’t be able to talk for about a minute. I’ll be okay.”  No one really freaked out, because I could hide it in the beginning.  I even hid it from my own mother when we were at Bread & Circus.  As time went on, the spasms got bigger.  What I can safely assume was happening in my brain was that my AVM was getting bigger, though no one knew it yet.  What had started as my tongue’s twitching evolved into a focal motor seizure which “took” the left half of my face as well.  The left corner of my mouth curled up uncontrollably and my cheek participated, too.  Yet I still told no one.  Not any of my roommates, not my college boyfriend of 18 months, not anyone in my family.  People today marvel about how I kept my secret.  Roommates ask me how they could have lived with me for a year and never noticed my stealth runs to the bathroom. 

One time, as I was having a physical from a new doctor in preparation for my new job teaching preschool, I mentioned my tongue spasm as an aside.  Here I had taken this huge leap, preparing myself to be questioned and prodded and taken down the road to “follow-up”.  It took me a lot of gumption to even mention it to this doctor.  What did he say?  He dismissed it, telling me he could put me on some drug just to stop it, but that it was nothing.  So I ignored it again. 

Another time, I was visiting with a friend in Chinatown, a medical school-bound friend, incidentally.  I was trapped between her and the Peking ducks in the windows when I felt the spasm coming on.  By this point in time, Christmas 2002, it had become too large to hide in my mouth, and she saw.  She saw, and she knew just as I believe I knew, that something was really wrong with me.  “You know,” she said when it was all over, “you should really see a neurologist about that.”  “I know,” I replied, because I think I really did. 

Not until my future husband saw it did I begin to take action.  This was a man I had moved across the state to be with.  A man for whom I had sought out jobs in his area code, sought out apartments in his county.  A man who had captivated me from 312 miles away over jdate. 

(To be continued)

If there’s one thing about my professional personality I think I need to bulk up, it’s my confidence in  my ideas, or plans, or my ability to stand up for myself.  I see egregious happenings all around me, but in the grocery store I don’t speak up because it’s ot my business.  At a day care center, where a child is in my “services”, it becomes my business.  So if I’m working with Joseph on taking turns, and he goes running to a teacher and crying and complaining that he didn’ t get the ball for every single turn, I meekly tell the teacher I’d like her not to scoop him up and coddle him.  It’s also happened when I’m just too cowed by the sheer bitchiness of a teacher to defend myself or the kid she’s yelling at.  As the kids lined up in the narrow corridor, one child’s coat fell off his hook.  As part of building his self-help skills, I asked him to hang it up himself.  He was in the midst of looking for a loop or the hood when the teacher barked at him, “Why do you have your coat?  You don’t need your coat!  It’s too hot outside.  Give it to me!”  In my mind, I replied, “It fell off.  Give the kid a freakin’ break.”  In reality, I said nothing. 

Too often I find myself saying nothing.  Two weeks ago, one church basement had finally found/unearthed enough basketballs for five three-year-olds not to fight over.  They also had rigged a basketball hoop appropriate for 10-year-olds.  Children kept trying to throw baskets.  They’d get really really close – directly under the hoop – and throw the ball vertically, resulting in its landing directly on, or frighteningly close to their noggins.  After 2 bonks on the head and 1 tricycle crash into a child paying attention to his basketball’s impending collision with his nose, I finally said something.  I asked the teacher (seated over on the sidelines, not seeing any of the bonks) whom I would talk to about ordering developmentally appropriate balls.  These kids could barely get their hands around the balls.  “Lisa”, in the office.

On my way out, I spoke to Lisa as well as to the pastor, who actually thinks the teachers downstairs are implementing his curricular ideals.  They’re giving out worksheets labeled “kindergarten math” to four-year-olds and singing a song about how when your mother calls you, you should come running right away because Jesus is watching.  Huh?  Well, Lisa insisted each class had plenty of balls.  “What?  I just bought them balls.  Really nice foam balls from the dollar store, five for each class!  What happened to those?”  Can you spot the oxymoron?  Well, I countered, those had disappeared or been destroyed, as foam balls so often are, and they need –I couldn’t stress this enough – a full class set, not five.  What good are five when you have 10 children?  The pastor insisted he was planning to order red dodge balls soon anyway, for the school age kids.  I explained the magic of low-density balls designed for preschoolers to lob at each other’s heads.  I was convincing enough; he asked me to bring in a catalog. 

Yesterday, when I’d finished seeing kids, I went up to the office, bypassing Dollar Store Foam Ball Lady and spoke straight to the pastor.  I showed him the page I’d highlighted, wary he’d be unwilling to purchase specialty balls that cost $54.95 for six.  Especially when he mentioned that he was at the end of the budget year, and there was so little money left, blah, blah, blah.  Well, maybe next year, I hoped.  Then he surprised me.  “I can afford $100 for balls,” he said.  I fairly whooped with joy.  I’ve been successful in my quest to provide safe and appropriate materials for these kids, and I’m on my way to growing my own set of balls.

Today the tickle that became a cough has become a raging sinus infection with a side of bronchitis.  I woke up feeling like I’d done some intense ocular workouts, but I took some Advil, and went to work.  By 12:30, when I got back to the office, I was sneezing and wheezing and gobbing all over the place.  If I hadn’t had actual work to do, and deadlines to meet, I would have gone home early.  As it was, I made it to 3:30pm, and went home to nap, and wait for Mr. Apron.  I tried calling my doctor at 10:30am, when I was between sessions, and was infomed that this man, my 85-year-old who made home visits to Mr. Apron’s great grandmother (for which she put on make-up), was not in the office today, and that the next appoint would be next Thursday or Friday.  By which point I would almost certainly be well.  To understand how unlikely it was that he was away at the AMA convention, you must understand that this man keeps evening hours 4 days a week until 9pm, after having worked full days and only having gone home for dinner.  He also works Tuesdays till 10pm, and Saturday mornings.  I think he must not like his wife very much.  It’s a wonder they ever had children.  He does take off the entire month of August, so you’d better not get sick then.  We have a theory he goes for rejuvenation treatments, probably involving formaldehyde and whole-body lifts.  But he keep on working.  Except for today.  I hung up, disappointed. 

Later in the day, Mr. Apron told me that his mother (who has bronchitis as well — but she swears she did not give it to me) went to the office and saw some “Nordic-looking woman” in the practice next door.  So I called back, rambling, “I know the doctor isn’t in this week, but is it possible to see someone from down the hall because I’m sick and need an appointment?”  She asked my name and birthdate, then offered, “Do you need to see the doctor, or would you like us to just phone in a prescription?”  I considered for maybe 3 nanoseconds, and readily told her my pharmacy’s name and my symptoms.  I get drugs without having to see Dr. Lutefisk, or giving her a copay!  I don’t like seeing new doctors; I like predictability and sameness in my healthcare providers.  That’s why I go to the octogenarian who gave Mr. Apron every immunization he’s ever had, and who knows the family history because he’s part of it. 

You must understand this is the first time I’ve ever gotten drugs without going to the doctor.  Even growing up with a physician father, I never got meds.  I just didn’t like drugs.  I was afraid of them.  Part of this is having grown up super healthy — no ear infections, no croup, no broken bones (till age 15), no rubella.  The other part of is is DARE.  I swear, they lumped every controlled substance — legal and illicit — together in that really cool plexiglass-faced suitcase, and scared me stiff from any pills powders, suspensions, or injections.  Even as an adolescent discovering the joys of womanhood (that’s how the hopelessly optimistic books portrayed it), I’d sooner lie writhing on the ground, curled up like a pillbug than take a Motrin. 

When I was fifteen, I broke my first bone.  Or, rather, a dumbass kid in my gym class broke it.  We were taking our PE final exam in the weight room, having been kicked out of the gym for the “Party at school and keep yourself safe on graduation night rather than going out into the dark scary streets of Smalltown, Minnesota” event.  Surprisingly, most grads did come to this event, which shows how lame Smalltown, Minnesota truly is.  So we were taking a scantron gym final, covering such topics as “Who is the professional basketball team for Minnesota?” and “How many players are on a boot hockey team?” I was seated on a weight-lifting bench, pencilling in my last 10 circles with my #2 pencil, when that dumbass, who had finished early but had to stay till the clock said we were done, decided to do some weight-lifting.  I can’t recall if we did a rotation in the weight room, in addition to such sports as raquetball, cross-country skiing, and swimming, but if we had, dumbass had since forgotten about that little piece you put on the end of the bar to keep the weight on.  I hadn’t.  He also forgot that his Woody Allen physique couldn’t  lift 90 lbs.  I saw that 45lb cylinder slide right down the barbell and bounce off my Doc Martens.  If I’d been wearing sandals, I can only imagine how much more damage he would have wreaked.  As it was, my big toe broke in 2 places.  I refused a trip to the nurse’s office, preferring instead to call home and hobble to the door.  I was in so much pain I couldn’t even climb the stairs to check out my other final grades.  I think the gym teacher was shitting himself worried we’d sue the school for negligence, but I didn’t report it, not knowing about such litigious opportunities as these.  For the next 2 years at school, he’d pass me in the hall and ask how I was doing.  Still scared. 

A week later, I had all my bone-impacted wisdom teeth extracted under general anesthesia.  They gave me a barf bucket for the ride home, a ‘script for some medicine to reduce swelling or fight infection, and a ‘script for Tylenol III.  I was so afraid of codeine, I didn’t touch the stuff. 

Finally, in college, after still finding myself out of commission once  a month with tear-inducing cramps, clutching a heat pad, I gave up and went on the birth control pill.  I am a convert.  Talk to me about side effects, benefits, cross-drug interactions, which ones reduce fever, and which ones you can’t eat grapefruit with.  I’ve got Advil, Tylenol, Excedrin Migraine, Sudafed (currently helping me breathe), and all the rest.  I’ve learned that drugs are my friend, and that DARE is a program full of scare tactics and bad skits. 

I had a drug-seeking roommate in college with whom I had the misfortune to go on a 7-week backpacking tour of Europe.  This was a girl on so many medications for asthma and allergies and post-nasal drip, and anemia, and probably others, she used an entire Bed, Bath, & Beyond plastic wheely drawer thing for her drugs.  Anticipating one of her hypochondriacal illnesses might flare up during our trip, she acquired from her pathologist mother a supply of antibiotics “just in case”.  She did use them, and on our last day, came down with some other mysterous malady which could only be cured by protein.  After crying out for chocolate milk (somewhat hard to find in Europe), I assured her I could find her yogurt.  “Does that have protein?”  Come on.  If you’re going to be a successful drug-seeking hypochondriac, you at least have to know your stuff.

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June 2009