(2007) Chasing Fireflies - A Novel of Discovery (27 page)

My mistake.

I got to my office early, googled HIV, and spent the morning educating myself. Finally I placed a call to a doctor in California who'd published several articles on the progression of the disease. Unlike the other countless specialists, his articles were written in language that an ignoramus like me could understand. The receptionist paged him, and I played the role of journalist.

"Hello, Dr. Myers, this is Chase Walker. I'm a journalist for the Brunswick Daily in Georgia. Our community has been affected by HIV as of late, and I wondered if I could ask you a few questions."

"Sure, but forgive me if I'm terse. I'm between patients, and chances are good they have less time than you."

"Let me skip the small talk. Can the disease be defeated?"

"In the short run, sort of. Long run, not yet. Least not that we know of. With drug therapy, we can eliminate any trace of the disease in someone's blood system, making old age a very real possibility. Some of my patients have had the disease fifteen years and yet are medically healthier than I."

"So it's not a death sentence?"

"Not like it was in the eighties. It used to be that the only treatment we had was AZT. We administered high doses, extended a patient's life by a few years, and the side effects were many and not pleasant. Research has since taught us that the virus enters a cell and attacks the DNA, enabling it to make more of itself. To do this, it must come out of the membrane of that cell, destroying that cell which, in effect, destroys the immune system. This occurs exponentially, not sequentially. You remember the brainteaser where someone asks you if you would rather have a million dollars or a penny doubled every day of the longest month of the year? Well, take the penny. This research led to the development of protease inhibitors. In short, they block the reproduction of the cell within itself, thereby placing the virus in a holding pattern."

"Making it dormant?"

"That's one way to look at it. If we start early enough, we can virtually eliminate any trace of the virus within a person's bloodstream."

"What's early enough?"

"Well, that depends on the person. Some people succumb much faster. Some can hold their own for quite a while before they ever see the effects. It depends on their immune system prior to infection."

"What about when combined with other diseases of the blood?"

"Good question, but let's back up a minute. HIV today is not simply one virus. There are now several strands with differing characteristics. By attacking one, we can enable another. Add to that any type of hepatitis, and we've got trouble."

"How's that?"

He paused. "It's the perfect storm. Treat one, and you encourage the other. Leave it alone, and they combat one another, growing stronger and ravaging the host, or patient. Either way, it's the worst possible scenario."

"How long would that patient have?"

"If we diagnosed early enough, we could give them a couple years. Maybe even a decade. Assuming compliance."

"Compliance?"

"To get better, the patient has to want to. Which means they have to willingly take medication, daily, for the rest of their life."

"Can they start anytime?"

"Well, yes, but again, there is no morning-after pill. Each patient reaches a point of no return where the body has been so ravaged that no medication on earth can reverse the damage. At that point, it's a matter of time."

"How much?"

"Again, look at the patient. It can be a week, month, year. After reaching critical mass, time-or one's expected lifespan-is a function of the level of infection, multiplied by some sort of coefficient of their immune system, divided by exposure to germs-or something like that. And we're still trying to figure out that coefficient. I've had patients who've died while on their first visit to my office. Obviously, they waited too long. Others came ten years ago, we patched them up, and they're hanging in there."

"How's it end? I mean, physically?"

"It's not pretty. I wouldn't wish it on anyone. The human body can handle a fever up to about 104. Much above that, and the proteins in your body start to unravel and break down. At 105, delirium often sets in, the patients convulse, step in and out of consciousness, lose control of their internal organs." He paused. "Have you ever seen those TV shows that depict people with hemorrhagic fever?"

"That bad, huh?"

"Worse. It's called Disseminated Intravascular Coagulation."

"Say that one more time."

"D.I.C. for short. The patient's blood system begins to clot, and not just in one place. But your body only has so much ability to clot. Once you've used up that ability, exhausted those antigens, the reverse happens. From there it's a snowball. They bleed from every organ, pore, and orifice. If they're lucky, they'll suffer a clot in either the brain or lungs, which will end the misery."

"I thought research was gaining on this thing."

"It is and we are, but this disease is always one step ahead of us. About the time we think we've caught up with it, it cloaks itself and changes." He paused. "Side effects aside, it's a remarkable thing."

"You sound like you admire it."

"I respect it, I feel for those who have it, empathize with the loved ones affected by it, and I wish I could eradicate it from the planet. It's an evil unlike any I've ever studied. But there's no magic wand. In twenty years of treating this disease, I've witnessed some horrific scenes of human experience. But while it can and does kill the body, maybe the worst damage occurs in one's psyche."

"What do you mean?"

"When was the last time you thought about dying?"

I was quiet a minute.

"See what I mean? For most patients with HIV, it's a daily thought. They might not dwell on it, it might not even depress them, but for most, every time they swallow their meds, it crosses their mind. That has an effect on a person's soul."

"How do you treat that?"

A chuckle. "I'm a medical doctor. Not Dr. Phil."

I liked him. Given better circumstances, I'd buy him a beer and ask him where he went to medical school and how he got started in this area. I decided to ask anyway.

"How'd you get started treating HIV?"

He paused. "Following a routine surgery, my wife received a blood transfusion. This was before we knew about the virus. After watching what it did to her ... well, you can probably write the rest of that story."

"Thank you, Doctor."

"Anytime."

I found Tommye sitting beneath an orange tree behind the house. In the four weeks she'd been home, she'd lost more weight. She had begun to look like the gaunt, hollow-eyed pictures in my head.

I picked a twig of grass, broke it, and stuck it between my teeth. "I had an interesting conversation this morning."

She lay down and placed her head in my lap. "Yeah?"

"Uh-huh, with a doctor in California named Myers."

"And what's he do?"

"He's a leading HIV specialist."

She closed her eyes, and I ran my fingers through her hair.

"And what'd he say?"

"He said a lot."

She looked at me. "Don't you get cross with me. I'm still one week older than you."

"Uh-huh, and you look it, too."

She smiled. "When I get to heaven, I'm gonna talk to God about you not respecting your elders. Besides, I've put more mileage on my chassis than you have."

"I'm not sure how to take that."

She laughed. "Oh, come on, one of the things you and Uncle Willee have always done is laugh at yourselves. I'm just trying to remember how."

We let the breeze push through the grass and spread the summer sun around us.

"So?"

"You want the long version or short?"

She shrugged. "I probably know the long version."

"He said he had medications that, depending upon a few factors, could give you a few more decades to-" I glanced at the house where Uncle Willee was teaching the kid how to whittle with his new pocketknife. "To watch the orchids bloom."

She smiled. "I'd like that."

"So, why aren't we at the doctor's office right now?"

She took a deep breath. "I contracted about four years ago. The business is pretty good about testing, but it's not foolproof. Which would explain the end of my acting career." Another deep breath. "After a few years of weeklong parties, all of which included multiple needles and people, I woke up on the floor of a room I'd never seen in a house I'd never been in with people I didn't know. I walked out, checked into a treatment center, and started thinking more about tomorrow than yesterday." She opened her eyes and looked at me.

"When I got there, my immune system was pretty much gone. I was one sniffle away from no return. So we started a megadose aggressive treatment of protease inhibitors that we thought was workingbut by attacking one, we strengthened the others. Sort of a sick and twisted catch-22." She closed her eyes again. "Now the medications I take just help with the pain." She sat up, wrapped her arms around me, and pressed her ear to my chest.

"How long had you been in the hospital when you called Uncle Willee?"

"Couple of weeks. They had to bring me back once. Jump-start me. You know, with those white air-hockey-looking paddles, like you see on TV? Well, don't try that at home. Take my word for it-it hurts."

We sat quietly, listening to each other hurt. Finally she lay back down, rubbed her chest where the memory must have made her itch, and placed her head on my thigh, speaking to the underside of the orangeless tree limbs above us.

"I had this dream." She chuckled. "I was standing on a stairwell inside a huge lighthouse. The stairwell spiraled around the inside of the walls of the lighthouse, and it was packed with people like me. Each stood in line, looking up toward the front where people were getting ready to meet whoever was up there. While they waited, they fussed over the pages in a book. Some looked like huge scrapbooks, while others looked like spiral notebooks. Everyone was working furiously, like kids trying to finish their homework before class. But I didn't have one.

"Every now and then we'd get to move up a step, closer to the top. I could see a man, maybe the lighthouse keeper, sitting at a desk reading the books handed to him. If he liked the story, he smiled and placed it gently on the shelf behind him. The shelves went on for miles. Pretty, gilded books. Leather bindings. Gold leaf.

"But he didn't like every book. And the ones he didn't like, he pitched down through the middle of the lighthouse. They fluttered down and landed in a huge fire that was mounded high as a house." She was quiet for a moment, then continued. "Then I felt something in my hands and looked down to find a book in them. I opened it and found the story of me. And I didn't like it. Talk about depressing. I nearly pitched it in the fire myself. But then I got to the end, and the last few pages were empty. I looked up front and the line was moving sort of slow, so I figured I still had time. And ... I knew the story I wanted to write. So I raised my hand. Everyone looked at me like I'd lost my mind, but what did I have to lose? I'd already been dead.

"So I said, `Sir, you're not really gonna like the story I've written, but if I could fill in these last few pages, you might.' He just looked at me, like he knew what I wanted to ask, so I went ahead. `Can I go write these last few pages and come back when I'm done?' He studied me, then smiled and nodded. I turned to the person behind me, said, `Hey, save my place,' and walked down the steps and out the door." Tommye laughed again. "When I left, every hand in the place was up."

She sat up, Indian style, and brushed her thumb along my eyebrow and the lines of my jaw. "Do I sound like I've lost my mind?"

I smiled and nodded slightly, earning a punch in the shoulder.

"You're not supposed to agree."

"Well ... you do."

We sat with each other. Just being together. It was good stuff.

"You know ... I set my homepage to the Brunswick Daily. In a sense, I've gotten to talk with you twice a week for the last five years."

"A conversation is always better when the other person gets to talk back."

"I know that. I'm just trying to show you that I'm not the forgetful pig you think I am. I kept tabs on you."

"You have a funny way of doing it."

She nodded, scooted closer, and put her arms around my neck, locking her fingers. "Chase, you have every right to be mad at me. I'd be mad at me too." She shrugged. "In fact, for a long time, I was mad at me, but being mad doesn't change things."

"I know that."

"I need you to do something for me."

She was turning on the charm, of which she had plenty, so I tried not to look at her. I picked another piece of grass and stuck it between my teeth. I wanted her to know that her leaving had hurt me.

She leaned in, shook her head, and waited until our eyes locked. "It's not going to be easy."

I waited.

She whispered, "Forgive me."

I smiled. "You're right, that's not easy."

"Trust me on this."

"Why?"

"Because one day, it'll all make sense."

"When?"

"Not long." She smiled again. "I've just got to write a few more pages. That's all."

"When do I get to read it?"

"I don't know, but you'll be the first."

"You left a pretty big hole in me. And coming home just opened up the wound and exposed the shrapnel left inside."

She sat back, the actress in her waking up. "Dang, did you think that up or read it somewhere?"

"Tommye ..."

"Hey, you're not the only one with a hole in your heart from what your dad did to you."

"I know, but when you were around, mine hurt less."

"Mine too."

"At least you knew your dad. I can't help it if he was a sorry ... a sorry whatever."

She stared at me. "You're not playing the victim, are you?"

I shrugged and smiled. "Maybe just a little. Is it working?"

She shook her head.

"I didn't think so."

"Hey, if you want me to feel miserable for going out west, for never calling, getting sick, and then coming home so I can die ... I already do. Can't feel much worse."