FINDING YOURSELF IN A DREADFUL DIAGNOSIS

By Justin Elson
Photography Megan McIntyre
Jun 4, 2010

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The news was delivered tactfully and politely. The team of doctors and nurses seemed to look past my eyes as they delivered their dreadful verdict despite having said nothing conclusive. It was the kind of moment where men and women in white uniforms can shatter your world while stealing a quick glance at their watches, wondering how many minutes until their next coffee or a few moments to catch a smoke out behind the cafeteria dumpsters. They were merely instructions: Go immediately to the hospital, because they had found something – this unnamed something – in my skull. The questions that any story must contain – the why, the what, the who, the wherefore – remained unanswered as I left with my parents headed for West Philadelphia. I was 16 years old. That night would eventually reveal that I had been diagnosed with a brain tumor.

The prior eight weeks had certainly suggested something was drastically wrong. My bed became my home as my body grew weaker and frailer. Days melted into one another, and I passed the time not in hours, but in how many pounds I lost. Four the first week. Eight the next. The third week: I weighed in at another seven gone. When I tried to eat, the whole of my day was spent on the bathroom floor, my cheek pressed to the hard tile, unable to expel any more energy after my arduous six-foot crawl. I was under attack from a nameless foe that was ravaging my body.

I grew accustomed to the four walls of my room now drab from the removal of anything colored too brightly. The pains in my head were intense and aggravated by even the slightest sounds or flashes of light. In my new womb, I was alone. In my hours of isolation, I outlined numerous scenarios of what could possibly become my eventual outcome, the conjecture, fear and assumptions all playing their roles. In some, I was courage, a great warrior fighting an unknown but worthy adversary – the kind of fighter that future generals would rally their troops around with tales of my glory. In others, I was tragedy. The memory of a lost son, brother or friend whom people would toast on holidays, a room falling silent – if just for a second – erupting again as I faded from consciousness.

In the hospital, the minutes yielded to hours and then days with the incessant metronome of beeps and buzzes generated by medical equipment I had never dreamed existed. My eyes burned from their lights. I remember the numbers. They would rise and fall behind their plastic casings, losing and gaining their L.E.D.-generated bars as they shifted form, movements in a digital symphony whose crescendo might be my very life. I carried with me the weight of a countdown. It was a Friday – a mere 24 hours after I arrived. My surgery, my self-perceived end, was scheduled for that Monday. I doubt this was what was meant by whoever coined the phrase “long weekend.”

I spent the evening before my surgery writing furiously. Sleep was far from an option so I was left with hours to kill, straining to see in the faintest of lights. I wrote my goodbyes. If I had not convinced myself that I would never live to see another sunrise, I surely believed that I was about to lose the part that could appreciate such a sight. I knew the person that I knew was never going to return once I was wheeled through the corridors, across the sterile tile and placed on that frigid stainless-steel table. As I drifted off under anesthesia, fighting with all my might for one last moment with the self I knew, all I could feel was the frozen, steely clutches of that table. I remember the countdown. I remember A Tribe Called Quest, echoing through the headphones of the Walkman the staff allowed me to wear. My final thought turned toward the McDonald’s in the lobby of Children’s Hospital. I don’t remember anything after that.

I awoke surrounded by my new friends: the endless beeps, the rhythmic buzz and the numbers moving up and down that had provided such great company in my room. All had returned. But they weren’t alone. Tubes tangled around my body, connecting my veins to the fluids that hung above me. Patches attached all over my body, cold and slimy, hooked to yet another of my friends. And they brought the spiked line that artfully drew out my very existence in its Etch-a-Sketch precision. I was more than just my flesh and blood, but part circuitry and electric impulses as well.

Like depressing a pause button, my first thoughts were of the golden arches a few floors down. Call it brilliant marketing or perhaps the foresight to know that in a building that houses sick children from all over the world, a little McNuggets and milkshakes can go a long way. As I struggled against a drug-induced haze, I could make out a few figures holding vigil over my bed. The room was silent except for a distinct ding that punctuated the anxious air. It reminded me of something.

“Fries are up,” I said, weakly. I still don’t know whether anyone heard me at first or if it was such an inconceivable, random remark that they just stood there in shock. After another ding, I repeated, “Fries are up,” mustering up a tad more strength in my voice. My aunt was the first to respond with a bewildered, “What?” My brother was the first to start laughing. It was emblematic of my sense of humor: abstract, off-kilter and oftentimes not seemingly funny unless you know me. The simple realization that I was still the person I knew swept over me, relieving the pain and discomfort of the moment.

I’ve never been more content in my own skin than those few moments, bandaged, bruised and attached to those brutal machines. I slowly opened my eyes. It was the first time in weeks – nine of them to be exact – that it didn’t blind me. I was bombarded with questions from my family. Call it my flair for the dramatic, but the answers were just not there. My mother asked, “Can I get you anything?” Again, I waited. “A number two,” I answered, “and supersize it.”

A RIGHT WRONG TURN
It’s not that you want to go to the bar. It’s not that you don’t want to go home. As a matter of fact, realistically, you expect your car to go straight, though you make a right anyway. For reasons never ascertained. And then there’s the three hours later, still completely unsure of why you were ever there. Still. But again, you fully expected to go straight. You wanted to go straight. You tell yourself, if it had been up to you, you would have gone straight. But for some knee-jerk reaction. But for some pneumatic impulse that forced the thrust of your wrist to suddenly turn, then to suddenly continue to drive, then to park and then to stay. But let it be known, you don’t enjoy yourself. You intended to only be there for one and done. Just one since you were already on the way. Because you mistakenly made a right wrong turn.

And then once there, well, the guy next to you is reminiscing about the ’71 All-Star game, all the Hall of Famers that were there that day. You say, “Wow, Mays, McCovey, Marichal, Aaron, Torre, Bench, Jackson, Vida Blue, Cookie Rojas, Seaver, Palmer, Yastrzemski and Rod Carew…” and there, your voice trails off, because there were other guys. You’re pretty sure Steve Carlton and Pete Rose had been there. And you keep rattling off names…Luis Aparicio, Fergie Jenkins…only now just in your head, from a time only read about in books designed to kill time.

It’s like listening to baseball on the radio when you’re driving home from Maine. It’s a Red Sox game. You’re not even a fan of the Sox, but it’s summer, and that’s what you think people do. They’re interviewing the Splendid Splinter, and he’s making dramatic points about the process of hitting, like we should attach some greater relevance to just a game and, and… why are you even telling this story? It’s corrupted, lifted, borrowed. The majority of the story you stole from a friend when he told you, and what was uninteresting about that story, you embellish here to make it seem more entertaining. The fact that it’s a tangent that leads you into this untrue tidbit, well, perhaps that’s the first clue that you should have gone home an hour ago. An hour ago. Time does not move without the aid of windows.

And how did you become referee of a drunken shouting match between a Red Sox fan and a Yankee fan in a bar in Pennsylvania? See, the one fella had a Red Sox lighter and the other guy, Yankee cap on his head, threw that lighter clear across the bar, over by the jukebox. Quickly followed by, “What the hell did you do that for?” And a well-timed and predictable, “Red Sox suck, dude.” And then you’re pulling them apart, and you realize you’re light headed. You leave them to fight it out or for the bartender make peace while you splash cold water on your face and wonder why you came in the first place.

Seeing the mirror, it’s still strange that you’ve middle-aged. When you lean in, when enough alcohol makes you depressed, you can see it. And it gets you to thinking about when the Eagles won the NFC East in 1988. They beat Dallas, and then the Jets beat the Giants. It was Al Toon in the corner of the end zone. The TV was fuzzy, New York channel two, because the Giants were the away team at the Meadowlands that day. It’s still so clear in your head though – not the TV but the memory, or maybe in memory even the TV clears itself. It’s Al Toon in the corner of the end zone, and my brother and I leaping from the top of the couch in a hug. That’s a priceless moment in life, meaningless and poignant.

That was 1988, and now it’s… it’s a lot later, so what’s that… years, and this isn’t where you thought you’d be. Some rundown bathroom. Look at the walls. You’d think they’d pay someone to clean this place. At least occasionally. The water though feels good. It’s cold, and suddenly, looking up, you realize it’s been 17 years. Seventeen somewhat good, or at least okay, or, well, prosperous-enough, considering, years. At least you’re still here. You’re sober enough to not feel so bad about the past. There will always be things, here and there, some more indefensible than others. Character flaws, or is this how everyone is? And yet, digressing through digressions on tangents of thought will only lead one to ordering one last beer and descending into conversation about a favorite episode of a particular show.

And now, quiet and thoughtful melancholy. Just observe how everyone tells the same story differently. And then get up, go to the bathroom again and leave without saying good-bye, wondering why you came. Rushing home. Wishing the car had just gone the way you told it to go initially, to where you wanted to be all along. That’s when you realize the only place you want to be is up in your head, thinking through lines, observing. Or telling stories. Or making people laugh. Or just getting slightly drunk. Not too drunk that you feel bad tomorrow. Just drunk enough that it’s not too hard to sleep. Drunk enough that you can enjoy singing on your ride home.

But then, you know, you’re still a little too drunk, perhaps even more than a little. And you could have been home an hour and a half ago instead of stalling through late-night construction. And meaningless conversation. But don’t lament too much. Forgive it a night because, you know, tomorrow you’re going straight home. So it was just an occasional, no… sporadic night cap. A blip if you will on an otherwise spotless resume. And life is good, good enough anyway. And you won’t be going out tomorrow night. And isn’t it right to stay friendly with those whom you no longer see? Or wish you never did. Even though you’ll probably see them again tomorrow. And wish you hadn’t when it’s over.

WHEN MY BRAIN GROWS UP, I WANT TO BE PRESIDENT
On my way home mid-afternoon on one of the first really warm days, the windows of my Subaru were down and National Public Radio’s “Fresh Air” was up. Terry Gross was interviewing Barbara Strauch, the health and medical science editor at The New York Times about her new book, “Aging: The Secret Life of the Grown-Up Brain.” By grown-up, she means middle-age. By middle-age, she means anyone between the ages of 40 and 68. By anyone in that age span, she means me.

As an illustration to demonstrate the difference between my brain and, say, my 16-year-old stepdaughter’s brain, she offered this quick test: How many “D” words can you come up with in 15 seconds? Since I’m a “word girl,” that should be a no-brainer. Mark the time. Okay. GO!

Dog…dog…dog…

The bad news, reported Strauch, is that our brains do decline as we age. The good news: This decline most of us are experiencing is perfectly normal. It’s not a big deal if you can’t remember the word “refrigerator” in a nano- second. It is if you can’t remember what a refrigerator is for. The status quo: We middlers are easily distracted; I’ve spent several minutes looking for keys that were in my hands. We become immersed in inner dialogue or drift into daydreams, often while we’re doing something rather important, like cooking… or driving. I’ve boiled a reduction to destruction and traveled miles before realizing I’ve long passed Turkey Hill where I needed to stop for…something. And we suffer from what are called “episodic memory lapses,” losing entire scenes or moments; I may or may not have had a whole-grain waffle for breakfast. I can’t remember.

Remembering names is probably the most common complaint – besides bad knees – of middle-agers. I call to mind a recent collective breakdown several of my high-school pals and I experienced on Facebook. Someone had posted that our sociology teacher, a guy we thought was ancient 35 years ago, was finally retiring. This is an abridged version of a two-day, 27-comment-long thread in which 11 of my fellow alumni weighed in:

John: Didn’t he teach math too?

Janice: Yes. But low level. Who was the guy who taught trig? I hated trig.

John: I think he was a short guy.

Cathy: Bald?

Me: And didn’t he limp?

Janice: I’m getting my yearbook – if I can remember where I put it. lol

Me: No! Not yet! OMG! I should know this. He was also the swim coach.

Cathy: A… I’m going through the alphabet. B… B-a… B-e… It was B-e… something.

Me: You do that too?! OMG! Yes! B! And it had an L… M… It had an N in it somewhere.

John: Mr. Benner?

Janice: Bennett!

Go, Janice! The math teacher’s name was indeed Mr. Bennett. Now here’s the thing I was most astounded to learn, making my way north on 611 as Terry and Barbara chatted on the FM air-waves. We store words in two locations. One is for information and data associated with the word. The second holds the sound that goes with that information. So the part of our brains that remembered the short, bald teacher with a limp who taught trigonometry and coached swimming is still strong. Where the word “Bennett” sleeps needs a wake-up call. That’s why many of us, I now know, mentally run through the alphabet as revelry. I thought it was my own brilliant cheat-sheet.

But what we lack in memory, I learned, we make up for in reasoning and planning and in understanding the gist. We’re better at sizing up people, deciding rather quickly whether the salesperson really has our best interest at heart when he tries to sell us an extended warranty. And while a 25-year-old might be quicker in compiling a list of vegetables, the middle-age brain will automatically categorize those vegetables into colors and shapes. I guess this is a good talent to have. However, I’d rather be able to remember an author’s name when I’m standing clueless in the stacks at Barnes & Noble instead of mentally noting that asparagus, celery and scallions are all long and green.

Now how do we keep our frontal cortex fit? Exercise, experts recommend. It’s not just the heart that benefits. All that oxygenated blood that’s coursing through the body is nourishing the brain too. And we should put our gray matter on a metaphoric treadmill as well. Sudoku is okay. Learning a language is better. But best: Argue a point and talk to people who disagree with us. Churning around a conflict, it seems, keeps us sharp.

I pulled up to my house, listening to the conclusion of the interview and deep in thought. With the mid-term elections bearing down on us, it occurred to me that the perfect place to argue, confront and disagree is the political arena. Yes! Holding public office will keep me smart. While I admit that to many that statement seems oxymoronic – confession: I needed a 15-minute break while writing this to retrieve the word “oxymoron” – consider my mom.

Thirty years ago, when she was 51 – the age I am now – she was first elected to her town council, eventually becoming mayor while sitting on a number of state boards and commissions. She’s still writing press releases for local candidates and attending every council meeting she can. And more often than not, at these Tuesday meetings, she waits in line for the podium with something rather prickly in her arsenal about the goings-on in the current administration. But is Mom a role model when it comes to mental acuity?

The other day I was driving her to a doctor’s appointment, telling her all I’d learned about the aging brain and bemoaning my miserable showing on the “D” test. She interrupted me, the starting gun having gone off. “Detriment, dexterity, demeaning, diligent…” she began to rattle off. I thought of another “D” word:

Damn.