Part VIII

I continue my brain surgery narrative, reflecting on how I and my friends and family coped with learning about my surgery.  Someday I will be clever enough to put a little thingy on the margin of my blog to redirect you in case you wanted to read from the beginning.  And I’d compile all the brain surgery blogs in one place.   That would be really clever.  Sorry, I’m not there yet.  Here’s the beginning of them.

My mother did not deal well with my impending surgery.  What would “dealing well” actually look like, with regard to a craniotomy?  What she did was reach out to any and all relatives, friends, friends of relatives, and relatives of friends, forming a vast support network.  I guess in retrospect, that was a wise thing to do, and a good way of making sure she did not become isolated with her feelings and fears.  Still, she seemed reticent to discuss it with me.  Maybe there were those age-old hushed voices behind my back saying, “Don’t mention the you-know-what around you-know-who,” and I really didn’t catch on.  I do know that many friends and family were more frightened than I was.  Not that I was in control of, well, anything, but they felt even less in control.  Similar to driving a car, you’re not in control of the drunken asshole who plows into you, but at least you can brake and swerve; whereas in an airplane, you’re completely at the mercy of the turbulent air, high-flying geese, and the drunken asshole who may or may not be your pilot. 

I felt I was doing some of the driving while I was scheduling appointments, racing around getting referrals, and learning about my diagnosis.  Once all the testing was complete (save for the imaging directly before and during surgery itself), and the waiting had begun, I no longer had any control.  Time was just ticking away towards June 22, my selected date. 

Memorial Day weekend, Mr. Apron and I moved in together.  We had had a heartfelt and brutally honest discussion some months before on a snow-covered bench at Haverford College, one of our earlier cheap-date sites, about the level of care I might need immediately after surgery.  We decided that we needed to move in together before surgery, to make things easier.  My family was planning to come stay for a few weeks after surgery, and we’d need guest lodging.  Mr. Apron also decided a first-floor bathroom would be ideal.  Oh, and easy access to the hospital.  Well, 2 of 3 fit the bill.  In the realm of what we could afford in rent on our meager salaries, we settled for the standard 3-bed, 1-bath (on the 2nd floor, of course) twin home (“duplex” in the rest of the country) just west of Philadelphia. 

Again, moving in together under the circumstances we did, nudged us closer to the reality of rehab, of home-care, of changing roles in our relationship.  Yet this, too, was a decision we made on our own steam.  We chose the home, the move-in date, the neighborhood.  We didn’t choose the mice that came with (and overrun) the property, but that’s another epic altogether.  Being settled in our new home, the novelty of co-habitating helped cover up the anxiety of what was to come. 

I wrote in my AVM support narrative about my feelings at this time.  I share with you here an excerpt:

“Finally, five months since the first doctor’s appointment, and t-minus one month till blast-off, I am ready to know exactly what is going to happen to me. I write in the passive voice because I don’t feel as if I am making things happen anymore. When I had to schedule tests and chase around collecting referrals for my pain-in-the-ass HMO, I felt that I was the one making things happen. I had to explain to the technician, and I had to spell out the initials for my diagnosis for the incompetent secretary writing up the referral: “Ay…Vee…eMMMmmm”. That’s the diagnosis, I assure her. I explained everything to my family, even as my dad defined all the medical terminology for me. I was able to choose which friends I told, and how much. Now, it seems surgery will happen no matter whom I tell. And it feels like surgery will happen to me. I don’t have to describe to the surgeons my diagnosis-defying tongue spasms; they can see the messed-up formation. They’re done with me; now they just need my brain. I want to know what they’re going to do to me, the patient, now that I know what they’re doing to It, the AVM.”

For my friends and family, the reactions varied widely.  I was afraid to tell them.  I’d only been working at my current teaching job less than a year, and I didn’t feel like full disclosure of my diagnosis was appropriate.  Many people say they are “a private person”; I think I am, for real.  Not say-I-am and then dump all my family shit on you and complain on and on about my mysterious medical ailments.  I’d noticed a trend when I told people that was enough to teach me to be more vague in my future unveilings.  Either they’d look at me in disbelief (I mean, come on, brain surgery?), and then be stunned into speechlessness, or else they’d mumble trite consolations of “Well, I hope it’s not serious” and “I’m sure you’ll be fine.”  Either way, no one actually wanted to learn about it.  It’s scary.  Who wants to dump that on casual acquaintances?  I started downplaying the seriousness of the whole issue:  “Well, there’s this ‘thing’ in my brain.” or simply, when parents of my preschoolers asked my summer plans, “I’m having surgery and taking the summer to ‘recover’.”  Nice and general.  No need to unload the whole gob.

Throwing up.  That’s what Mr. Apron and I call it, to this day, because we decided that the reaction I get is similar to as if I’d vomited all over someone’s lap.  They’re all pretty much disgusted or shocked, and just want to leave and go clean it off, and to pretend it never happened.  There is no casual, socially appropriate response people learned from Miss Manners when dealing with such revelations.  “Oh, I’m so sorry.”  “That sounds serious.”  “You must be petrified.”  “I’m glad it’s not me.” “Wow, how interesting; tell me more.” 

I actually did get many, “I hope it’s not serious”es.  This sedate effort at minimization and comfort bothered me to no end.  My gut respose, “Why yes, it is serious, actually.  Life threatening.” would again seem too much to dump on someone, and seems, at best, like a plug for pity, which I did not want.

So I certainly was unnerved when the manic wife of my uncle’s college buddy (following?) bid us good night at the door at her son’s bar-mitzvah reception (still following?) , as we offered up our Mazel Tovs, with the following words of comfort: “I’m so sorry!” she wailed. “It shouldn’t have happened to you! You’re too young! You’re too young!”  What, pray tell, is the right age for having elective brain surgery?  I was told by Dr. Zager I was the ideal age.  Somehow, to this hysterical woman, whom I’d just met that day, there would never be right age, a right person, a right situation. 

Probably not the right response.  How did she find out anyway?  And how about my sister’s girlfriend’s mother’s best friend from childhood?  How did she find out?  My father’s cousin in Kansas City?  People I never knew I was related to?  My mother’s telephone tree, no doubt. 

Yet that was her coping mechanism.  Though she couldn’t say the words “brain surgery” or talk to me about her fears, she managed to communicate around the world in ways I could not do with my co-workers.  Her efforts made prayers come in from all corners of the country, and, later, get-well cards as well.  They brought me telephone calls in recovery with people I hadn’t spoken to since I was five, if ever. 

I was able to disclose more details to my real friends, people who would not mind a little upchuck if it meant being in the loop and keeping in touch.  They really cared, as they were able to show.  The 84 e-mails that came in over the week I was in the hospital showed they were not scared away by the seriousness of my condition.  Today I am more candid in telling new friends my brain surgery tale, as people meeting me know there is a “happy ending” to my story. 

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