Dante's Poison (2 page)

Remember that withholding facts from the research team can skew study results.
“Not really.”

“And the next event occurred when exactly?”

“About a month later.” Twenty-one days, four hours, and fifty-seven minutes later, if she really needed to know.

“What did you do in the interim?”

What did I do?
Good question. When I wasn't drowning myself in bourbon or trashing my small apartment, I made bucket lists—
A Thousand Things to See before You Go Blind
—that I knew were pure fantasy. There were places in the world I'd always meant to travel to, but the majority were in countries where I didn't trust the medical care (despite the fact that they were home to half the residents in my hospital) or my odds of getting home in one piece when—
if
—it happened. Bike trips were out for the same reason. With my luck, the lights would go out just as I was rounding a hairpin turn in the Rockies or in the middle of rush hour on the Golden Gate Bridge. If I were going to commit suicide, I could think of many less painful ways to do it. The Art Institute was only a short walk away, but I wasn't up to viewing bucolic scenes of French country life or catching a glimpse of
The Old Guitarist
. There was only one face that I needed to remember, and I handled his photo until it was ready to fall apart.

On the few days when I could stand to think about my future, I purchased a couple of the “top-ten products for independence” touted by a local blindness organization—a talking clock, a kitchen timer with raised dots, a set of powerful magnifiers (the last being entirely wishful thinking)—that I thought might help me get through the first few weeks. I even ordered a free white cane, though when it came in the mail and I checked it out in front of a mirror, I'd gone weak at the knees and hurriedly shoved it into the back of a closet. With hindsight, there was so much more that I should have done, would curse myself later for not doing, but I was still in the throes of magical thinking. And so, when the day of reckoning finally came, I was about as ready to play in the big leagues as a boy who's just hefted his first Louisville Slugger.

I didn't crack right away. There's a novelty element to losing one of your major senses that for a while had me simply wandering around my apartment, trying on the experience like a bespoke suit and allowing me to think it just might be manageable. The slippage started a few hours later, and by nightfall, I was a flat-out wreck, hugging my knees and weeping in a corner. I'd been on my own for most of my life but
this
. . . I felt like Burgess Meredith venturing out into a postapocalyptic landscape, utterly alone and without even the solace of a good book to keep me company. If it hadn't been for the alternate reality I'd dreamed up in Turner's office, I probably would have ended it there and then.

I didn't tell any of this to Melissa, of course. Instead, I fed her some professional-sounding nonsense about loss and mourning, throwing in enough fabricated detail to make it seem like I was telling the truth. It must have succeeded, because when I was through she said, “I think we can move on now.”

I breathed an enormous sigh of relief.

“I have to be frank,” she continued in her prickly manner. “When you first contacted me I didn't think you'd be an appropriate candidate. Most of the success we've experienced overseas is with subjects who've only recently been diagnosed. The drug seems to work best as an early intervention, and your case is, well, rather past that.”

“I know that,” I said, trying not to sound too eager.

“If we include you it will be for two reasons. First, because the affected population is so small. And second, in order to test whether mild improvement is possible even in LHON sufferers who have been blind for several years. You shouldn't expect much, if anything, to come of it.”

I nodded. What she was leaving out was that nearly a quarter of the subjects like me achieved enough visual acuity by the end of the trial to read a few letters off an eye chart.

This is as good a place as any to explain that what I'd ended up with, while not as bad as it could have been, was on the low end of the VI spectrum. Depending on my surroundings and the time of day, I could make out bright light and shadow, the fuzzy presence of large objects, and the occasional hint of color—the last primarily from the corner of my right eye, where I retained a sliver of peripheral vision. When forced to offer details, I told people it was like looking at the world through a sheet of wax paper. Under the circumstances, I'd consider it a victory just to be able to see an eye chart.

“And, of course, the study will be double-blind, meaning neither you nor I will know whether you are receiving the drug or a placebo.”

“I can live with that,” I assured her.

“Can you? For some the stress of not knowing one way or the other takes a heavy toll. And if you're in the placebo group, there could be a huge let-down at the end. I see from your application that you've been consulting a psychiatrist.”

“Yes, but not because of anything having to do with this.” I gestured at my eyes. “I can live with what I have. I'd just like to have a little more.”

“I see.” I took this to mean she wasn't convinced, so I poured on the sincerity.

“Listen, Melissa—I mean, Doctor Singh—I know you take your job seriously, and that you're concerned about all aspects of my well-being. I would be too if I were in your boots—I mean, shoes. But I'm well-adjusted to my condition and a psychiatrist besides. I'm sure I'll be able to manage the uncertainty, and if it becomes too much I'll know where to go for help.”

“That's comforting,” she said, as though I'd just offered her a discount on aluminum siding. “But I still have to be concerned about data loss. The manufacturer is anxious to obtain FDA approval with this trial.”

I understood what she was getting at. Withdrawal from a clinical trial—either because of side effects, unpleasant study procedures, or simply because a participant doesn't feel any better—is a major headache for medical researchers. Dropouts produce biased comparisons that can drastically alter the outcome of a study or reduce its statistical significance. I assumed this was the reason for the grilling Melissa had put me through: she was trying to decide whether I had the guts to stick out the program.

“You don't have to worry about me copping out,” I said. “I'll be your guinea pig for as long as you want me. If nothing else, I'd feel a responsibility to my fellow LHON sufferers—as you call them—to complete the treatment.”

I was beginning to sound like a Boy Scout.

“Very well, then. I'll be meeting with the sponsors later today and should be in a position to tell you soon whether you've been accepted. Given some of the heavyweights lobbying for your inclusion”—I visualized more scowling—“I'm not anticipating a negative response. We'll have to meet again to go over informed consent, but assuming all goes according to schedule”—
shedyule
—“we should be able to commence treatment on the fifteenth.”

September 15. Less than one week away.

When I left Melissa's office it was half-past noon and I hadn't eaten all day. I had an hour to spare, so I walked over to a pizza joint on Rush that serves the real stuff, not the Chicago version that comes in soggy three-inch squares and tastes like cheese curds. I was a regular, so as soon as the manager saw me he put in an order for a Margherita and steered me to a table in a corner where I could more easily stow my cane. I loosened my collar and tie, sipped at my water, and felt some of the tension ease out of me.

I can live with what I have.
It was true up to a point. On a good day I barely gave a thought to what I was missing and had few excuses for feeling sorry for myself. I wasn't in a black hole. I could still see
something
, and my former photographic memory made up for a lot of the boredom that otherwise goes hand in hand with vision loss. Stepping off a curb no longer felt like bungee jumping in the Grand Canyon. Thanks to all the geek brains volunteering to solve my problems, I was more independent than ever. My new smartphone had apps for detecting the value of paper currency, for reading items off a menu, even for telling me when my socks were mismatched. Hell, the way the technology was headed, it wasn't crazy to think that one day I'd be behind a wheel again.

But there were also bad days. Days when I had to ransack my home to find where I'd left my keys, or been hijacked by one of the Good Samaritans lurking at crosswalks, or had to answer one too many dumb questions. (“How do you know when you're awake?”) On bad days even the small frustrations—walking into a closed door, knocking over a drink—multiplied until getting out of bed the next morning seemed as pointless as scrubbing the bathroom tiles with a toothbrush or walking back and forth over hot coals. How much of this had to do with blindness, as opposed to all the other things on my plate, I couldn't tell you. But it made the possibility of even a small uptick in my fortunes all the more appealing.

Still, I wasn't naive about my state of mind. Hope is a powerful stimulant, and when the e-mail came announcing the US trial of a new drug that had shown promising results in the Netherlands, I was on the phone before I even reached the end of the subject line. To say I bullied my way into Melissa's study was putting it mildly. I called in every favor I was owed, including a major arm-twisting campaign by my boss, Sep, who played golf with half the hospital directors in the city. He wasn't wholeheartedly in favor, but couldn't say no after getting me involved in a case that had almost cost me my life. My friend Josh was even more downbeat, concerned it would undo all of the progress I'd made over the last year.

“Aren't you going to feel like shit if it doesn't work out?” he'd said to me recently on one of our Sunday forays to Jewel, the supermarket being one of the few places where I capitulated to the advantages of being guided. “You're better these days than I've seen you in a long while. You've got a great kid and an ex who's talking to you again. You have more work than you can handle, especially with all the lawyers knocking at your door. Why take a chance?” He pushed our grocery cart forward.

“You do realize that we're talking about something that might let me see again?”

“Maybe. I read the journal article put out by wooden-shoe people. The results for guys like you weren't so impressive. You want some of these apples? They're on sale for ninety-nine cents a pound.”

“Sure,” I said, letting him place my hand on the bin. “Anyway, a twenty-three percent success rate sounds pretty damn good to me.”

“Here's a bag. Twenty-three percent made it all the way to 20/800. You'd still be taking cabs and wearing headsets at movies.”

I selected a few of the fruit that didn't seem worm-eaten and popped them into the plastic. “You're really trying to talk me out of this?”

“I don't know. It's just that I remember what you were like . . . back then. Aren't you just a teensy bit worried about taking it on the chin again? You're going to be under a lot of pressure, not knowing whether the drug's doing any good, never mind whether the pills you're taking are made of sugar. If it were me, I'd be seeing all sorts of things that weren't really there.”

Josh moved ahead and I followed along, hanging onto his elbow. “I'm a shrink, remember? I think I'll know it if I start hallucinating. And my expectations aren't that high.”

“Forgive the look of skepticism on my face.”

“C'mon, Josh. You
know
why I have to do this.”

“Louis is not going to love his father any less because he can't read a newspaper.”

“Yeah, but maybe he'd prefer somebody he can play ball with when he's older.”

“Speaking of which, how'd the last visit go?”

I'd just returned from a weekend on the East Coast, where my son and former wife lived. It was only the third time we'd been together since he was an infant.

“I don't know. Annie's still balking about leaving us alone together. She thinks I'm not going to notice if Louis lets go of my hand and runs out into traffic. That's another reason I have to try. Maybe a change, even if it's a small one, would help win her over.”

Josh couldn't argue with this and let the subject drop for the duration of the shopping trip. But I could tell he wasn't finished and had been going out of my way to avoid him ever since.

I was still thinking about our conversation when my phone played the first few bars of
The Letter
—the Box Tops version, not that I have anything against Joe Cocker—signaling an incoming text. I fished it out of the holder on my belt, slipped on my Bluetooth, and ran my finger over the glass until Weary—my nickname for the factory-supplied voiceover—chirped “Messages.” I double-tapped the icon to open the program. It was Hallie Sanchez, reminding me I'd agreed to accompany her to the theater that night.