A PEAK INSIDE

Last month, while I was in Rehoboth Beach, two of my best friends came down from New York to visit me. Though I was close friends with each of them even before they knew one another, they’re now one of those couples whose names are inextricably linked in my head—

“Tom and Mindi.”

“Mindi and Tom.”

Rolling off my tongue, it feels like their names have always been said together.

Since I was so close to both of them before they started dating, I’ve become a weird sort of third wheel in the relationship. They’re very protective of me, very insistent that I keep them abreast of how-I’m-doing-and-what-I’m-up-to (though, admittedly, Mindi wants to be sure that I’m eating well and getting enough rest, while Tom is more interested in how much I’ve been writing). When we walk through Manhattan they often flank me, so that, in the event that I trip, they’re sure to catch me, regardless of the direction in which I fall. They become enraged when they feel that I am being mistreated, personally or professionally, and I know without a doubt that there is no favor, big or small, they wouldn’t be willing to do for me.

So these are the friends that were strolling with me down Rehoboth Avenue, the town’s main stretch, when a man in his mid-forties, sporting mutton-chop sideburns and a t-shirt that read “Beer: it’s what’s for dinner,” turned a corner and began walking in our direction. When he caught sight of me, however, he stopped and—there is no other word—gawked at me. He gawked at me as I limped towards him, shifting his gaze from me to my cane and back to me. Mindi and Tom, of course, noticed this immediately and as we passed Mr. McMuttonchops Tom shot him a disdainful look and said, “Yeah, it’s a CANE, jackass.”

Further down the block, Tom and Mindi still seething, I laughed, because that kind of thing—strangers staring at my cane—happens all the time and it doesn’t bother me at all. I mean, in some ways, who can blame them? How many 28-year-old men walk with canes? If I were temporarily injured, I’d probably be walking with crutches; if I were more severely disabled, I’d be in a wheelchair. I get weird glances because, as I’m sometimes told, I don’t really “look disabled.” One of the questions strangers most often ask me is this: “Is the cane just for show or do you really need it?” And I suppose it makes sense that a guy like me might be wandering around with a cane just to look cool (especially in this town), so it’s a valid question.

Of course, it’s fine to be the guy suspected of using a cane as an accessory when I’m on the subway, but when I take advantage of some of the “perks” of being disabled, then I start to worry that people will suspect I’m a faker. At TKTS in Times Square (where you can buy half-price tickets to Broadway and Off-Broadway shows) they have a policy that disabled people don’t have to wait on the line that loops down Seventh and up Broadway and around and around. Every time I walk up to the windows I find myself over-emphasizing my limp, trying to make myself look weaker than I am. I do the same thing when I’m back in Ohio Christmas shopping, pulling into a handicapped parking space next to a little old lady helping her husband into a wheelchair. Parking, of course, is insane at Midwestern malls and here I just pulled into the last handicapped space in the lot. She looks at me, eyes all squinty, and so I heave myself up outta the car, turn my right foot in towards my left, lean hard on the cane, and shuffle slowly into the store. Just to be sure she buys it.

So, yeah—I guess I don’t “look disabled.” But neither, I suppose, do I “look sick.” And that’s an important thing to point out. People who are permanently disabled as a result of accidents or developmental disorders and thus rely on wheelchairs or scooters or walkers to get around, are constantly trying to shake the misconception that they’re sick. They’re disabled, yes, but other than that, they’re healthy.

That’s not the case with me. And I realize that one can’t just look at me and determine that I have tumors running throughout my body. I certainly couldn’t tell in the years preceding my first MRI. Even when I was diagnosed eight years ago, and for several years thereafter, I didn’t have a very clear mental image of what exactly my situation was internally. A few years ago, though, I asked to see copies of my scans and I gotta tell ya—I was amazed. Obviously, I knew that the tumors were pretty prevalent, but I didn’t expect them to be as prevalent as they are. And, to me, it’s all pretty cool, pretty remarkable. Staring at the latest scans with my doctor a few weeks ago I said, “How is it that things are this advanced, but I’m still so high-functioning?”

“We don’t know,” she said. “It’s a mystery.”

(On one hand, I guess it is a mystery. But on the other hand it’s not a mystery at all. If you know what I mean.)

And I really dig my MRIs—I freakin’ LOVE ‘em—because they remind me how lucky I am to still be capable of driving alone cross-country and tromping around Manhattan. So, it’s in that spirit that I post a few scans here. I thought you might like a better idea of what exactly we’re dealing with....


Here's what we call the lumbo-sacral spine, the lower back. With the exception of the kidneys there at the top, everything that's white is tumor.



















Bizarre, huh?...

Here's the upper spine. Again, with the exception of the brain and brain stem, the white is tumor.
















And now here's the problem spot we'll be addressing on the 21st: the cervical spine. In this one the spinal cord is white and the tumors are those gray nodules. Those are the tumors that the doctors will be working on.




















So, that’s what’s up inside of me. My friend Mark and I used to joke that I should carry copies of these around to show people when they give me those baffled looks or suspect me of faking a limp to get a prime parking space…. Of course, if I did that, they’d probably stare more, huh?

More soon.

- D