9.30.2008

CHAPTER 46

I should have been allowed to go home on the third day after my brain surgery. That's what the brochure said, but that's not what happened.

Okay, here comes some medical stuff. If you get bored, just skip down a couple paragraphs.

My body was acclimating slowly to the introduction of the oral blood thinner Warfarin, which is marketed under the brand name Coumadin. The problem was, I couldn't leave the hospital until my international normalized ratio (INR, or the tendency of the blood to clot) measured between 2.5 and 3.5. These numbers were determined by a PT/PTT test, wherein blood is drawn and the clotting factor is measured at the lab.

When I was anti-coagulated with Heparin, the intravenous blood thinner, the doctors were able to far more easily control the INR. A phelbotomist would take a blood sample, have it measured and then increase or decrease the I.V. drip accordingly. But with Coumadin, the process was completely different. When I would take a dose orally, it wouldn't have a measurable effect until 12-14 hours later.

For example, they would test me in the morning, get the results that night, change my dosage, measure me again in the morning, and then find out 12 hours later I had overshot the number. Then they would reduce the dosage, test me again the next morning and discover that I was too low.

It was like a see saw. Up and down, back and forth.

I was getting stabbed by often-incompetent blood takers twice a day, and it was getting to be a fucking pain in the ass (and the arm). Because the various IVs had been in my left arm since late October (to allow free movement of my right arm), the blood samples always had to be taken from the right arm. But by December 8, the righty veins were staging a work stoppage. They were bruised and battered, and the phlebotomists were unable to find a vein that they could gain access to. So all blood now had to be taken from the left arm.

I would tell the tech that when they came to my room. You'd be amazed at how many times they ignored me. They would put down their little plastic lunch box filled with needles, pull one out, stab me in the right arm, stab me again in the right arm and then say something like, "Hmmm. Nothing is coming out." Then they would move to the left arm -- just as I had told them to do in the first place.

By this point in our story, I was no longer the tragic little sick boy, so I voiced my displeasure forcefully. And one of the principal recipients of my frustration was Dr. San Giocomo, who had been forced into the thankless role of liaison with my cardiologists back at St. Francis. That meant that he was the one who had to bring me the bad news every day.

"You're at 1.9. That's too low. It needs to be 2.5. So we're going to up the dose again."

"And then tomorrow I'll be at 4.1, which is too high, and you won't let me go home either," I said, snottily.

"We don't like this any better than you do, but we cannot let you leave here until the numbers are right. If you are too low you can have a stroke and if you are too high you can bleed, and you don't want to do either."

So I got to spend more time in the hospital. And not just the hospital, the brain surgery ward, where patients would roam the halls with this distant, zombified look in their eyes.

Each day my roommate Danny got a bit worse. In addition to frequently repeating the truly harrowing story of his grapefruit-sized tumor, Danny had started to fall asleep while talking to me. One moment we'd be chatting away and the next moment he'd be unconscious. Then I'd wait a minute or two, he'd wake up and our conversation would start over, often about something completely different.

I had enormous empathy for Danny but honestly, he was freaking me out. Every time I talked to him I thought of how close I had come to a life like that. It didn't make me feel lucky that I had come through with such flying colors. It made me feel paranoid. I was afraid that I was going to wake up one day and be like him. Maybe the glue would leak, or the bacteria would reappear, or another aneurysm would form. Danny was putting ideas in my head.

I had become so conditioned to having one more thing wrong with me just as I was getting ready to be discharged, that I almost expected it to happen again.

On Monday I went for a CT scan to review the Embolization site. The report came back that everything looked good. There was no recurrence, and the aneurysm site looked stable. All of that made me feel better intellectually, but emotionally I was still gun shy. It wasn't pessimism. It was fear, and the fear was making me misbehave.

"You know, I might just walk out of here," I said to Dr. San Giocomo, like an ungrateful little prick. "You might just come in here one day and find me gone."

"I wouldn't advise that," he said. "Because if you leave before you are medically discharged, your insurance company will revoke payment on everything that's been done to you during your stay here. So unless you have a very rich uncle, I'd advise you to ride this out."

On Tuesday morning I got a spinal tap. Actually, they don't call it a spinal tap anymore. Now it's known as a lumbar puncture, which doesn't have quite the same umphh. The doctor asked me to lay on my side and he stuck a cartoonishly gigantic needle into my back between two of the vertebrae. Then he sucked out a vial of my cerebrospinal fluid for some sort of test to determine, I think, if there was any residual bleeding going on in my brain.

I had to lie on my back for a few hours afterwards, and I had a killer headache, but the test determined that there was no residual bleeding in my brain. That was another hurdle passed.

"You have got to get me out of here," I said to my mother on Tuesday afternoon. "Seriously I'm going crazy."

"First of all, stop being a baby," she chided. "These people saved your life, so why don't you act a little more appreciative toward them?"

"I know they saved my life, but I also know that they are not cardiologists. This business of testing my blood here, calling St. Francis, leaving a message, getting a call back and then having Dr. San Giocomo rely the message to me - that is ridiculous. It's inefficient."

"How about this," my mother said. "Let me call Dr. Horwitz and see if we can't get you sent back to St. Francis. That way the cardiologists can monitor you first hand, to make sure that nothing gets lost in translation. Plus it will be easier for everyone to visit you."

"Agreed," I said.

I never thought I would be in favor of leaving Manhattan to go back to Long Island, but I needed to get away from the crazy brain surgery patients and back to the kindly old cardiac ones.

On Wednesday Dr. San Giocomo made his daily visit with bad news.

"Too high," he said. "But we are trying to get you moved back to St. Francis. We'll keep you posted on that."

By the end of the day I had heard nothing, so I called Dr. Pyle-Spellberg's admin.

"Sorry Mr. McKinley," she said. "They don't have a bed for you."

"I don't need a bed. I'll take a chair. Or a cardboard box in the hallway, like a cat."

"You know what I mean," she said. "We need to wait for a spot on the cardiac floor to open up."

The same thing happened on Thursday. No room at the Inn. So I called Mary at work for some solace.

"You've gotta calm down," she said. "You are so close to getting out of there. Just try to be patient."

"I am trying, but these people don't understand. I've been in the hospital since October 22. It's now December 11. This is not helping me get better."

"Have you spoken with your cardiologist?" Mary asked. "Maybe he could help you understand why this is taking so long."

"That's a great idea. I'll do that now."

I hung up and called the office. Dr. Horwitz was not there so I asked them to page him to the phone in my hospital room. No reply. Two hours later I left another message. Still no reply. Later on I left a third one and the phone finally rang.

"Thanks for calling me back on the third try," I said. "I really appreciate the level of responsiveness."

"What can I do for you?" the doctor asked, choosing to ignore the fact that I was being a dick.

"I want to get out of here," I said. "They have me in a ward with brain surgery patients and stroke victims. It's like Night of the Living Dead here."

"Let me remind you that you are a brain surgery patient, too," he said. "And a stroke victim. And if you don't want to be one again, you need to stay put for as long as it takes to get your Coumadin regulated. Regardless, we can't move you to St. Francis until there's a bed. Hopefully one will open up tomorrow."

That night, Danny was in particularly bad spirits. He was going in the next morning for some sort of procedure to treat a recurrence of his brain tumor. He tried to explain to me what they were going to do, but it came out all jumbled.

"You know what I'm most worried about?" he said. "I'm worried about my wife. I'm worried that she is 30 years old and she's going to be stuck taking care if a vegetable for the rest of her life. She's a hot, beautiful girl. She didn't sign on to take care of a vegetable."

"But isn't that what you do for the people that you love?" I said. "You help them through the bad times. And you help them get better."

"Yeah and what if I don't get better?" he said.

"Well you gotta think positive," I preached.

"You're right," Danny said. "Look at you. Everything worked out for you. You're all fixed up. You've got nothing to worry about and everything to be thankful for."

I felt like apologizing for being okay. Here's this guy who is clearly getting worse, and here's me -- the lucky one. I felt bad for being luckier than him. Why me and why not Danny? It made no sense. Arguably, he had more to live for than I did. He had a wife and three kids. And that little baby. Whatever happened to Danny tomorrow, those kids were going to have a tough time. It wasn't fair to them.

A little while later, Danny's wife came in. She was alone, no baby in sight.

"Hey honey," Danny said. "Will and I are just talking about my fun day tomorrow."

"Tomorrow's going to go fine," she said. "But I was thinking that you need a nice shower before your big day. Willie, do you mind if we use the bano for awhile?"

"Not at all," I said.

"Mira papi," she said. "You are dirty. I need to give you a good washing."

Marissa started kissing Danny. And I took that as my cue to leave.

9.29.2008

CHAPTER 45

You can't eat a tuna sandwich while lying flat on your back.

That is something you only come to realize after you've tried it. Some people might even call it a learning experience.

"Here, let me help you," my sister said, as I awkwardly dangled the hoagie perpendicular to my mouth.

I was now in my own little Neurosurgery ICU room, where I had been instructed to remain in a fully reclined position, due to the catheter still in place in my femoral artery. It was only a few hours after the completion of my brain surgery, but I was already getting impatient.

My sister propped up my head so I could take a bite of my delicious lunch.

"It's ironic that you're feeding me," I said. "I thought that would only happen if the surgery was a failure. Then you would have had to move back to Long Island so you could feed me and change my diapers for the rest of your life. That's why we got you from Korea, you know. Just in case something like that happened."

"I was a little bit nervous about the healthcare proxy," she said. "That's a lot of responsibility, to make a decision like that. So I talked to Monsignor Fink about it."

"And what did he say?"

"He just sort of sloughed it off. He said I would never have to worry about it, which thankfully turned out to be right."

"That's good, considering his past history with advice regarding me," I replied, talking with my mouth full. "Mary went to him for counsel right before we started dating and he counseled her to stay away from me. I'm lucky he didn't advise you to pull the plug before my brain surgery."

"Stupid," she chided. "That's not funny."

"By the way, I would like to announce that I have officially rescinded the healthcare proxy. So if you kill me now, it will be considered murder."

"Nobody would convict me," Missy said. "By the way, I like this hospital much better than the other ones."

"Why?"

"The cafeteria is better," she said. "And they have candy machines on all floors."

"And they saved my life, don't forget that minor detail. But I understand that's a secondary consideration to your ability to buy Skittles."

Yes, the doctors can fuck around with my brain and my heart, but there's no operation to repair sarcasm. That was going to be with me 'til the end.

Later on in the day my parents came in to the room for a visit. They had left the house at 5:30 AM for the long drive into Upper Manhattan during rush hour, and they were both looking pretty worn out. I suggested that they go home and get some rest.


"It's not like they're going to find something else wrong with me," I said. "I've already had all my major organs repaired. There's nothing left to fix."

"You're a very lucky boy," my father said.

I slept in the ICU that night and woke up the next morning, late for school. So school came to me. A professor from Columbia University and about a dozen med students had all gathered around my bed, discussing me like I couldn't hear what they were saying.

"This patient presented with aphasia, dysarthria and a lower left facial droop," the professor said. "He was diagnosed with a mycotic aneurysm in the right middle cerebral artery on November 24, following a cerebral angiogram at another institution. Yesterday morning he underwent an Embolization with Dr. John Pyle-Spellberg and the Neuro Interventional Radiology Team."

It was extremely odd, being there -- fully conscious -- and being the topic of discussion. I didn't know if I should be flattered or annoyed. After all, nobody had asked if I minded a visit from a dozen strangers at 8 o'clock in the morning, before I even had a chance to brush my teeth.

Actually, it was kind of flattering. Now that I was ostensibly out of the woods, I could marvel at the minor medical celebrity I had become. I mean, how many people get to have experimental, non-invasive brain surgery, and then become the topic of a med school class? I was famous. I wondered if I should say hi to everyone, speak up, offer to take questions from the audience.

"What was the cause of the aneurysm?" one of the students asked.

"Can I take that one Doc?" I said.

"Certainly," the instructor replied.

"I had an undiagnosed mitral valve prolapse, and I contracted a bacterial infection called endocarditis during oral surgery back in June. Vegetation began to grow on the valves and threw a clot into my brain, which caused a minor stroke event this summer, resulting in the left facial droop. After extensive testing the endocarditis was finally diagnosed in late October, and I was placed on a course of intravenous antibiotics. On November 13 the aortic and mitral valves were replaced at St. Francis Hospital on Long Island. The aneurysm was diagnosed about ten days later, most likely a result of bacteria that had lodged in the artery."

"Is the bacteria still present?" a female student asked.

"A blood culture the day after Thanksgiving revealed no recurrence of the bacteria and the antibiotics were discontinued soon after."

"Were there any other symptoms that you experienced, besides the disarthria, aphasia and facial droop?"

"I had difficulty reading," I said. "That was the most obvious, at least to me. I couldn't move to the next line without covering up the previous one. I also was unable to identify a picture of a hammock in pre-surgical testing with the neuropsychiatrist Dr. Lazur."

"Have you been re-tested for that since the procedure?"

"Yes. I was able to identify all the pictures, including the hammock," I said. "And I hope to be lying on one soon, on a beach, far away from here."

"I'd like to thank Mr. McKinley for being such an excellent subject," the instructor said, as the class responded with polite tennis applause. "And best of luck for your recovery."

And with that, my impromptu press conference was completed. There had certainly been a lot of surreal moments over the course of my extended illness, but this one was right up there.

Later in the day I was apparently deemed out of danger, because the femoral artery catheter was removed and the incision was sealed. Then I was moved to a semi private room, back in the brain surgery ward.

"Hey, I'm Will," I said to my new roommate, a 40-something white guy with a messy side part and a salt and pepper moustache.

"I'm Danny," he said. "What are you in for?"

"Treatment for an aneurysm," I said. "I just had an Embolization yesterday morning."

I intentionally did not ask Danny what his problem was, because I didn't want to pry, or touch on any sore subjects. But even though I didn't ask, Danny told.

"I'm a New York City firefighter," he said. "One day I was at the fire house, and I collapsed right there on the floor. I had some sort of seizure. So they took me to the ER and they did a CT scan and they discovered a tumor the size of a grapefruit in my head. It had literally crushed my brain to half its natural size, it was so big. And then they did surgery to take it out."

I tried to be subtle about it, but I was scrutinizing Danny while he told me his story. He seemed pretty healthy, save for a bit of slurring and something of a far-off look in his eyes when he spoke.

"Wow," I said. "But they took it out. So that's good news right?"

"Yeah," he said. "But now it looks like they have to go back in. I don't know. We'll see. I hope not, you know?"

"I know," I said.

At that moment, Danny's wife and baby showed up. The wife was clearly much younger, Hispanic, and very hot. The baby was adorable - a little, dark-skinned girl with one of those baby headbands with a flower on it. Danny also had a framed picture of an older boy and girl on his bedside table. I wondered if those were his kids, maybe from a first marriage.

"Hey baby," he said. "This is Will, my new roommate. Will this is my wife Marissa and my daughter Raquel."

"Very nice to met you," I said.

I decided to go for a walk while Danny visited with his family. The best news of the day was, I was now liberated from my ever-present I.V pole. After six weeks of being connected to something or another, I was now a free man once again. I had begun taking Coumadin, the oral blood thinner. I was in the home stretch, finally.

I sat for awhile in a small patient lounge with giant windows that looked out onto the Hudson. It was late afternoon and the sun was just beginning to set over the bridge. I picked up a copy of The New York Times and read the front page with ease, and then the sports section. It was fun to read again.

When I got back to the room, Danny's two older kids were there too.


"Hey Will," he said. "These are my kids Daniel and Danielle. They're both named after me, so I can't forget their names, which is good because I have a tendency to forget things, especially now."

"Hey guys," I said.

I looked at Danny, sitting there with his gorgeous Latin wife, his beautiful new baby and two teenage kids. Everybody was sitting on the bed, gathered around him, together. The older girl was holding the baby, cooing in her face, making her laugh. I was sort of jealous of Danny and his adoring family. I thought about the choices I had made, about the fact that I was facing a new life, alone, when I finally got out of here. I thought about that pregnancy scare Mary and I had back in the summer of '87. If that had been more than a scare, I would have a 9 year-old coming to visit me right now.

How do kids deal with with the illness of a parent? Your mother and father are supposed to take care of you, not the other way around. And they're certainly not supposed to die when you're not even young enough to drive. That's what happened to my mother's father, and I know it changed her. She had to grow up fast, help my grandmother take care of her two younger sisters, get a job, help pay the bills. I know it made her a stronger person, but it robbed her of something.

I excused myself again. When I came back, Danny's family had gone and our dinner trays had arrived. I sat down on my bed and started eating.

"So what are you in for?" Danny asked me, again.

I answered his question, making an effort to vary the story a bit from the one I had told him just a few hours previously.

"You know what happened to me?" he asked. "I'm a New York City firefighter and I had a tumor the size of a grapefruit..."

This was the second of at least three times Danny told me his story on that first day. Each time he told it to like it was the first time. The only difference was, as it got later in the day, Danny's speech got slower, more deliberate, more slurred. He was like a wind-up toy that needed winding.

By the end of that night, I was no longer envious of Danny.

9.28.2008

CHAPTER 44

And then I woke up.

I was lying on a gurney just outside the surgery room. People were coming in and out, wrapping things up, like roadies at a rock concert.

Load it on to the truck, boys. Tomorrow night we're at the Civic Center in Akron!


I was parked off to the side, by myself, like a car left idling when the driver runs in to 7-11 for a pack of smokes. Honestly, I was a bit disappointed that nobody was standing above me when I awoke, anxiously awaiting my moment of truth. In the movies there's always that low-angle POV shot, looking up from the hospital bed, of a loved one's face going in and out of focus. But no smiling face to greet the new and improved me.

That's the question, isn't it? Was I improved?

Will v. 2.0 was new but, in retrospect, not necessarily improved. No slight to Dr. Durbin and any of the heart surgery team at St. Francis. They did their job perfectly and saved my life, to the extent that they could.

But the Will v. 3.0 factory refurb was slightly more complex.
To review, there were really three possibilities for how the brain surgery might have turned out:

1) Worst Case
The aneurysm ruptures during surgery, perhaps during the balloon occlusion. I have a brain hemorrhage, causing multiple so-called red strokes. I probably don't die, because I'm surrounded by a bunch of doctors in an operating room. But my parents spend the rest of their lives caring for me, and I spend the rest of my life wishing I had never made it out of surgery.

2) Best Case
Everything goes exactly according to plan. The balloon test reveals no deficit from the occlusion of the artery. I wake up refreshed and ready for a jog across the George Washington Bridge.

3) What Actually Happened
Way closer to #2 than to #1. Way.

I woke up feeling a bit groggy, probably due to to the anesthesia. It always takes a little while to shake that off. It's sort of like when you have a couple of drinks on an empty stomach and begin to feel really drunk, and then you eat a bowl of pretzels and everything clears up (until you drink more).

I spent a few minutes lying by myself on the gurney, getting my bearings. Pretty soon I remembered where I was and why.

"Hey, I'm awake," I said to one of the nurses. "If anybody would like to know."

Okay, I can talk. Check!

Next, I began to shift my legs on the gurney, with the idea that I might get up and take the new brain for a test drive.

Okay, I can move. Check!

"Whoa whoa!" said one of the nurses. "You have to lie still. You still have the catheters in. You can't be running around the hospital. I'll go get the doctor."

Dr. Pyle-Spellberg walked in a few minutes later, followed by Dr. Giocomo, Dr. Lazur and Dr. Huong.

"So how did it go?" I asked the panel.

"Well, that's what we're here to find out," Dr. Lazur said, as he pulled out his magic flip book, and turned to a particular page.

"That's a hammock," I said. "And before you ask, the president is Bill Clinton. Anything else?"

"No, I think we're good for now," Dr. Lazur said.

"Do you have any questions?" Pyle-Spellman asked.

"Just one. When can I go home?"

"Well, you'll be in the NICU overnight. We keep the catheter in place just in case we need to go back in for any reason. You'll get a follow-up CT scan tomorrow and, if everything looks good, we'll take out the catheter, send you back to your room and start you on taking the blood thinner orally. And once you test within the range that your cardiologist has requested, you can go home."

"That's great. I have one more question."

"What's that?"

"Can I get a tuna fish sandwich? For some reason I am really craving a tuna fish sandwich on a roll. Also a Cherry Coke."

"I'll see if we can get somebody on that," he laughed.

"You know, the same thing happened when I had the heart surgery. I woke up with a strong desire to eat spaghetti and meatballs and drink a black and white malted. Is that a normal response to surgery, to have food cravings?"

"Not necessarily, but it's a good sign that you're hungry. I'm going to invite your family in. I'm sure that they will be happy to hear all about this."

Dr. Pyle-Spellman walked out to give the full report to family, who had been patiently waiting to learn if I was permanently brain damaged while I was negotiating my lunch order. Dr. Lazur packed up his book and shook my hand.

"I'll see you on Monday for a follow-up. Congratulations on making it through with flying colors."

"Thanks," I said. "I really appreciate everything you guys are doing."

Dr. Huong, who I think was Vietnamese, walked over and shook my hand, as well.

"Mr. McKinley, are you religious?" he asked.

"Sort of," I said. "Probably more so now than I was six months ago."

"In that case, I think the first place you should go when you get out of here is your house of worship. Because you have a lot to thankful for."

Dr. Huong was right. There were a lot of reasons why things had worked out as well as they had: the expertise of the doctors; the relentless advocacy of my mother and some good, old fashioned luck. But I do think that my faith played a significant role.

Oh, I just cringed when I wrote "my faith."

For the most part, I am entirely opposed to organized religion. I find it to be divisive and exclusionary, and I blame it for most of the world's problems. But I do firmly believe in the power of spirituality, in the power of thinking positively and in the healing force of dozens, if not hundreds, of people sending good vibes your way.

From the bedside prayers, to the hospital room visits by my parents' parish priests, to the reports that everyone at church was praying for me, even though many of them had never met me -- I cannot, or will not, deny that spirituality played a role in what was turning out to be a great medical success story.


I don't necessarily think there was a gray bearded guy in the sky guiding my surgeon's hands, but I do know that spirituality gave my parents strength and hope, at an exceedingly difficult time. There is nothing more trying for a parent than to watch a child suffer and die. And I know from things that my father told me afterwards that he thought my death was a very strong possibility.

And their faith extended to me. If they had lost their shit, I might have lost mine, and we might have made decisions out of fear and pessimism instead of hope and optimism.


Maybe it is hocus pocus, or the lingering effects of my childhood brainwashing, but there is something comforting about a guy in a black suit coming into your hospital room and saying some magic words over you, while touching you on the head. That's what happened to me before both my surgeries. It's called "the anointing of the sick" in Catholicism, and I'm sure that I'm not the only Catholic fence-sitter who has gotten comfort from it.

Speaking of family and comfort, there was definitely some crying when my parents and sister came in to see me with Dr. Pyle-Spellberg. It must have been nerve-wracking sitting out there, with nothing to do but worry. It's much easier to be the one under the knife. I just go to sleep and wake up when it's over.

"Could you do me a big favor?" I asked my misty-eyed sister.

"Anything," she said.

"Can you get me a tuna sandwich and a Cherry Coke?" I said. "Or even better, a Dr. Pepper, in a cup with ice."

"I can't believe you just had friggin' brain surgery," my sister said.

9.26.2008

NEXT CHAPTER ON SUNDAY NIGHT

Due to the current economic turmoil, I have decided to temporarily suspend my chapters and head to Washington D.C in an effort to broker a bi-partisan solution to the crisis.

9.25.2008

CHAPTER 43 (slightly revised)

This was only my second night in the brain surgery ward, but one thing had become abundantly clear: my fellow patients were -- how can I put this? -- colorful.

Remember the Nazi I shared a room with back in the early days of my stay at South Nassau Hospital? Perhaps you've noticed that I haven't mentioned any other roommates since. That's because I can't remember any of them. Outside of the teenage motorcycle accident victim, my roomies in the heart surgery ward were standard issue old guys, parading through bypass after bypass, for weeks on end.

But the brain surgery ward was definitely a horse of a different color. And on the night before my Embolization, my roommate was keeping things interesting.

Jesus was tall and thin, Puerto Rican I think, with deeply tan skin and a thin, dark moustache. Like a lot of patients in the brain ward, Jesus wore a bandanna to cover a bald head and the accompanying scar.

Patients who have suffered a traumatic brain injury, stroke or tumor removal can often appear to be less sharp than otherwise healthy people. But in my experience, while certain traditional brain functions may be compromised in these people, others develop in their stead. It was as if some of them were aliens, able to see through different eyes, to say things that the rest of us couldn't. Like they used to say on the old Superman TV series, they were "strange visitors from another planet, with powers and abilities far beyond those of mortal men."

Jesus was one of those strange visitors.

He sat there, his slippered feet dangling off the single bed next to mine, reading Bible passages in his soothing, heavily accented voice. I found it comforting. It was like having my own private padre, right there in my room, engaging in an all-night prayer vigil on the eve of the most important morning of my life.

Every now and then, Jesus would interrupt his Scriptural readings to tell me about his brain surgery - how he felt beforehand, and after.

"If not for this I would never have truly appreciated the value of my life," he said, proudly removing his bandanna and showing off the hook-shaped scar . "I didn't know who to thank, other than the doctors, so I chose to thank God. And I plan to live my life in a way that makes the world better."

He reminded me a bit of Jimmy Stewart jogging down the snowy streets of Bedford Falls at the end of of It's A Wonderful Life. However you feel about Frank Capra movies (and I admit they can be a bit ham-handed at times) the message is a good one: appreciate what you got-- and do what you can to make what others have got better.

I had never really done that before I got sick.

It's embarrassingly cliche, but it had taken all of this shpilkes to make me realize the error of my ways. Maybe Jesus was my Clarence, my angel-in-training. I listened for the sound of a bell ringing as I drifted off to sleep, but all I heard was ticking.


At 5:30 AM I was gently roused from sleep by an orderly in navy blue scrubs.

"Good morning," he said, as he shook my shoulders. "I'm here to prep you for surgery."

"I thought that was happening at 8AM?" I said, as I looked out the window at the George Washington Bridge, illuminated against the dark sky.

"We like to get an early start here," the orderly said.

He pulled the curtain around my bed and asked me to pull down the gray sweatpants that had become part of my daily fashion ensemble. He covered my crotch with a small white towel, and then folded it away from the left groin, which he lightly scrubbed with some anti-bacterial cleanser. Then he pulled out a disposable razor and shaved clean the left side of my pubes and some of the hair on my inner thigh.

"Sorry," he said. "I hope your girlfriend doesn't mind."

"I'll be sure to ask," I said. "When I meet her."

There was all sorts of activity, in and out of the room: blood being drawn, various nurses coming in and out, checking blood pressure, etc. Jesus managed to sleep through all of the commotion, his Bible lying open upon his chest. I didn't get a chance to say goodbye before the wheelchair brought me to the surgery area. I hope everything worked out for him.

My parents, sister and two aunts were seated in the family waiting area when I arrived. Everyone greeting with me with hugs and kisses. Then Dr. Pyle-Spellberg walked in.

"Good morning everyone," he said. "Let's talk for a minute about what's going to happen today."

"Will will be prepped for surgery and mildly sedated, enough so that he is unaware of what's happening, but still conscious. The anesthesiologist is with us throughout the whole process and will regulate the level of sedation, based upon what we are doing. Once we have inserted the catheter and reached the aneurysm we will test the occlusion with a balloon. At that point we will wake you up and ask you a few questions to determine how your brain reacts to the closure of the artery. Assuming everything goes according to plan, we will then seal the artery with glue and send you over to the NICU for recovery."

"And what if everything doesn't go according to plan?" my mother asked.

"Then we have a decision to make," he said. "Either we proceed with the Embolization or we don't and look at other options."

"Other options?" I asked. "Like what?"

"Traditional surgery. Treating the aneurysm with clips."

"And cutting my head open?"

"Yes," he said.

"That's not an option, as far as I'm concerned," I said. "I want to make sure we're all on the same page about that."

I looked first at Dr. Pyle-Spellberg, then at my family. Everyone shook their heads.

"Well, hopefully we won't need to address that question," the doctor said.

"God willing," my father added.

Then I said goodbye to everyone, accompanied by more hugs and kisses, and promises of prayer. I reminded my sister that she was my healthcare proxy, and of what we had discussed back at St. Francis before my last surgery.

"If something goes wrong, you're gonna pull the plug, right?" I asked.

"Yes," she said. "But nothing's going to go wrong."

Then they rolled me into the surgery room. It was big and bright, with shiny, expensive-looking equipment and flickering video screens. On the wall behind the operating table there was a glass window, where students could sit to watch the proceedings.

There were a lot of people in the room, and Dr. Pyle-Spellberg proceeded to introduce me to all of them, as if we were at a cocktail party.


"Dr. San Giocomo is our DJ," he said. "And he has selected the Beatles White Album for our program today. Do you approve?"

"Sounds good to me," I said. "As long as you stay away from the brown acid."

And then I was out.

Some time later, Dr. Pyle-Spellberg stepped out of the operating room and visited my parents with an update.

"Things are going well, but we've encountered a complication." he said. "The aneurysm is too unstable to inflate the balloon. If we do, we run the risk of a rupture."

"So what does that mean?" my mother asked.

"It means we're going to have to do the Embolization without testing loss of function first," he said. "Or we're going to have to stop."

"What do you suggest?" she asked.

"I would be very uncomfortable with leaving that aneurysm untreated any longer," he said. "But once it's been sealed, there's no undoing it. You're going to have to make a difficult decision."

I have no idea why the doctor didn't wake me up and ask my opinion about what to do next, but he didn't. I thought that was the point of having me only partially sedated. I can't imagine how my parents must have felt, being forced to pull the trigger on a decision that could save my life. Or ruin it.

"Will made his wishes clear," my mother said. "Unless anyone strongly disagrees, I think you should do it."

"I believe you've made the right decision," Dr. Pyle-Spellberg said.

Then he went back to the operating room to complete what he had started.

9.24.2008

CHAPTER 42

Now I was in a pickle.

I had been officially discharged from St. Francis. The EMTs had arrived to transport me to North Shore. But I wanted to go to Columbia Presbyterian. It was a bizarre hospital love triangle.

"Guys, can you give me a minute?" I said to the EMTs from North Shore. "I just need to wrap up a few things here."

They stood in my doorway, leaned on the gurney and just sort of looked at each other, their walkie-talkie's chirping and crackling with dispatcher instructions.

"Can I ask you to wait for me in the corridor?" I said, in my faux polite voice. "I just need to make a quick phone call. Thanks. I really appreciate it."

I looked over at my aunt, and motioned with my head.

"What's the traffic like out there?" Aunt Margaret asked the EMTs, as she led them into the hall. "They must be doing road work, because it was backed up all the way along Searingtown Road..."

I quickly picked up the phone and dialed Dr. Pyle-Spellberg's administrator.

"It's Will McKinley calling back," I said.

"Oh Mr. McKinley," she said. "It looks like there is no room available for you yet."

"Well the problem I have is, there are two guys here who want to bring me to another hospital, where they are going to take a buzz saw to my head. I don't want to go to that hospital. But I can't stay here, because I've been discharged. Is there anywhere you can store me, even temporarily? I'm not picky, really."

I was interrupted by Dr. Chalof, who came into the room.

"The ambulance is waiting to take you to North Shore," he said.

"I know that," I said. "But I'm not going to North Shore. I'm going to Columbia Presbyterian, assuming that they have room for me."

"We'll find a room somewhere," I heard the admin said through the phone. "Don't get in that ambulance!"

"I won't," I said. "Dr. Chalof, my apologies for everyone's trouble, but I'm on my way to Columbia Presbyterian."

Dr. Chalof turned and left. I don't recall him saying anything to me, like "good luck" or "take care" or words to that effect. Or maybe he did and I forgot. Either way, I never saw him again. And I can't say I've missed him since.

I knew I would miss Maria, though.

I had dozens of nurses over the course of my extended stay in both hospitals, and all but one of them have receded into faceless memory. But I can still see Maria's big smile, her thick mane of curly black hair. I can still hear that Lawn Guylund accent.

That warm, bosomy hug she gave me on Thanksgiving Day was not in her job description. It was that extra step -- holding me when I cried, negotiating with my cardiologist so I could disconnect from my I.V. and take a shower, allowing my parents to reheat my food in the nurse's microwave. All of those little actions transformed what she did from a job into a vocation.

As I waited for my ride to the city, Maria came in to say goodbye.

"I don't think I've ever had a patient cancel an ambulance pick-up," she said. "That was definitely a first."

"Well, obviously you've never had a patient like me," I said. "And, for both of our sakes, I hope you never do again."

"Best of luck, Will" she said. "Give us a call and let us know that everything turned out okay."

"Thanks for everything," I said, as I gave her a big hug.

Around 3 PM the ambulance finally arrived to take me to Columbia Presbyterian. I asked my aunt to join me for the ride. I was happy to finally be getting out of St. Francis, but I was nervous about what awaited me at the third -- and final -- stop on my Hospital World Tour.

"I've never been in an ambulance before," my aunt said, as we sat in traffic on the Long Island Expressway. "And I hope I never will be again."

"I feel the same way," I said. "But I'm nervous, because it keeps getting harder to talk. It's getting harder to find the words."

"That was the most frustrating thing for Nanny, after she had her first stroke," my aunt said. "I don't know if you remember this but, after she got out of the hospital, she moved in with us. And she was re-learning to talk at the same time that my son George was learning, when he was about two years old."

I remembered that period well. It was difficult to watch my grandmother slur her speech, to say words that made no sense. It was like she was possessed. It was the same person, the same body, but somebody different had taken over inside. At 11 or 12 years old, it was often too much to deal with. I wondered if that was what I had to look forward to.

"The brain is really amazing," my aunt continued. "Because parts of it can become totally non functional, and other parts will take over. There were doctors who told us that Nanny would never walk again, or talk again. We said 'thank you for your opinion' and ignored them. Aunt Pat and I started giving her physical therapy right there in the hospital. We didn't wait for anyone to tell us it was okay. We just did it."

"I hope you two remember what you did back then," I said. "Because I may need you to do it again."

"Nanny called me Hitler," Aunt Margaret said. "Because I was so hard on her back then. Something tells me you're not going to need that."

"I hope not," I said. "Because Nanny was way tougher than I've ever been."

As we neared the hospital I saw the George Washington bridge lit up out the window of the ambulance. Seeing the city skyline or recognizable New York landmarks always makes me feel better, particularly when I've been gone for a long time. Long Island was the home of my family, the perfect place to go when I was too weak to take care of myself. But the city was my turf and, if everything worked like it was supposed to, the city was going to be the place where this story ended happily, once and for all.

But there was a lot to deal with before the final bows. First was the admission process. Next, was finding a place for me to spend the night. It was after 8 PM by the time I got to the brain surgery ward, and I immediately noticed some differences.

Heart surgery patients tend to stay in bed, eating their boiled, low-sodium chicken, watching Wheel of Fortune or the History Channel. Brain surgery patients, at least in this particular case, tended to be sitting in wheelchairs in the hallway, looking dazed and occasionally babbling to themselves.

"We're going to put you in a room temporarily," the nurse said. "Until a bed opens up for you. Hopefully in the morning."

"I'm just glad to be here," I said. "You can put me in a broom closet if you like."

Actually, a broom closet would have been better than where I ended up. They wheeled me into a two person room, with the white curtain pulled all the way, making my roommate nothing more than a voice. And what a voice it was.

She -- yes, she, this was the first female roommate I ever had -- kept yelling the same thing over and over again.

"Pino!" she would yell, at full voice. Or maybe it was "Tino." I wasn't sure. She would shout it out, like she was calling her child in from playtime for dinner.

"Are you going to be able to deal with that?" the nurse asked me.

"I can deal with it," I answered. "As long as I can get some food."

The nurse ordered me a tray and I sat there, with no TV, listening to this woman, merely inches from me, yell at the top of her lungs, over and over again. She was like a metronome, perfectly timed, and always saying the same thing, the same way. She would wait maybe three minutes in between each yell, and always stretch out the "o" at the end end, like you might if you were calling someone from a distance.

After I ate dinner I called my parents.

"You hear that?" I asked, as my new friend yelled out, right on cue. "That's my new roommate."

For some reason there was no TV in the room, and reading was out of the question, so I lay there most of the night, thinking. I wondered how I had ended up at, at the ripe old age of 29, on a bed in a brain surgery ward, the tick tick tick of my bionic heart occasionally interrupted by the plaintive calls of a crazy person on the other side of a curtain.

Just how the fuck did I get myself into this, anyway? It wasn't my fault, of course. But, it was, in a way.

When an otherwise healthy person dies, he or she is just as dead as the two-pack-a-day smoker who succumbs to lung cancer. Friends and family feel the loss just as deeply, cry just as long and as loud. But what about the dead person? At the last moment of consciousness, what does he think?

Does he lay there and think, "If only I had done things differently."

Of course he does. I don't care what anybody says. When you have brought your own illness upon yourself and your loved ones, you feel like an idiot. No, I didn't bring my illness on, but how I dealt with it (or didn't deal) had almost killed me. And it still might. Or worse.

I didn't make any pacts with God that night, or promises to myself. I just lay there, on that single bed with the starchy white sheets, wondering who the fuck "Pino!" was, and how my third chance was going to pan out.

On Wednesday morning the preparations for my brain surgery began.

First, I went for a SPECT scan, which involved being injected with a radioactive substance and asked to lie on a table with my head taped down for about 3 hours. As always, I took a nap to pass the time.

Next I was taken for a transcranial doppler ultrasound, where a magic wand-like device was waved over my head to record blood vessel activity in and around the aneurysm.

The third step in the pre-surgery testing process was the most interesting. I sat down in what looked like a small conference room for a session with a mustachioed neuropsychologist named Dr. Lazur.

We chatted for a bit and discovered that we were both from the same home town on Long Island. As we talked, I began to wonder if our conversation was part of the test or not, but it seemed to go fine.

"How'm I doing so far?" I asked.

"You're doing fine," he said. "You can't fail any of these tests. We just conduct them to get a sense of where you are pre-procedure, so we can compare that to where you are after."

Next he showed me a series of nine cards, each with a sort of line drawing on it. I had to copy each drawing.

"You know, I was never particularly good are drawing, even before I had an aneurysm," I said to him. "So I hope you're grading on a curve."

Next I had to look at a page with nine boxes. Each one had a triangle in it. Then, from another page, I had to select the image that best completed the sequence. I'm sure I got it wrong. I've always been terrible at tests like that -- brain damage or not.

I also had to say as many words it a particular category as I could in 60 seconds. And finally, Dr. Lazur pulled out the final test: a small flip book, each page with black & white drawings.

"I want you to tell me what each of these pictures is," he said.

Things were going well, until he got to a picture of a hammock.

"I know what that is," I said. "It hangs between two trees. You lay on it. Gilligan and the Skipper used to sleep on it on Gilligan's Island."

"What is it called?" Dr. Lazur asked.

"Uh! I can't think of the word," I said, pounding the table with my fist

"Okay, we'll revisit that one," he said. "After your embolization."

Understand one thing: at this point in my life I had never smoked weed. I didn't know what it was like to be dopey, or high, to forget what I was saying, or doing. The fact that I could not find the word hammock inside my brain freaked the fuck out of me, more so than my inability to read or my problems with language.

Late that afternoon I was finally given a proper room, with a proper roomate - a Latin guy named Jesus. Jesus told me that he had had one brain surgery and was waiting for a second. And then I discovered why he called himself Jesus.

"Will, do you believe in God?" he asked.

"Yes, I guess so," I said.

"Then would you mind if I read a passage from the Bible?" he said.

"Not at all, as long as you don't start yelling Pino," I said.

And then he began to read from the New Testament. Our little Come-to-Jesus was interrupted by Dr. Pyle-Spellberg, who stopped in to introduce himself. He was short and bald, with glasses and a bow tie. he looked a little bit like a character in the Richie Rich comics I used to read -- the one who gets his lunch money taken by the neighborhood bully.

"I just wanted to say hello and see if you have any questions," Dr. Pyle-Spellberg said.

"It's great to met you," I said. "Are we still on for tomorrow morning?"

"Yes, he said. "First thing. 8 o'clock in the morning."

"Great," I said. "It can't come soon enough."

And then Jesus and I went back to reading Scripture, in hopes that tomorrow I would rise again.

9.23.2008

CHAPTER 41

Three weeks and one open heart surgery later, Monday night was going to be my last night at St. Francis Hospital.

One way or another.


My parents got back to my room around 7 PM with a handful of brochures from Dr. Pyle-Spellberg at Columbia Presbyterian. One was called Cerebral Aneurysms, another Diagnostic Studies prior to Therapeutic interventions and the third, Therapeutic Embolization.

"So what were your overall impressions of the guy?" I asked my parents.

"I liked him," my mother said. "He didn't patronize us, he was very receptive to all of our questions and he seemed to me to be operating on slightly higher level than some of the doctors we've seen here."

"And what did you think?" I asked my father.

"I was very impressed with the man," he said. "He came across as very intelligent, and he spoke clearly so we could understand everything he was saying. He seemed very confidant that he could do this and do it right."

"That's one of the things that bothered me about Chalof," I said. "I didn't feel a lot of confidence in him. I don't trust him, and I really want to trust the person who is going to be fixing my brain. I feel like he's trying to rush me into making a decision. I mean, I'm not holding up the line at McDonalds so I can choose between a Big Mac and McNuggets. This is the most important decision I've ever had to make."

"Well, take a look at those brochures," my mother said.

So I did. I took a look at them, but the words didn't look like sentences or paragraphs. They looked like a fuzzy bowl of alphabet soup. I could pick out individual words and phrases-- disease, blood vessel, real-time -- but I couldn't figure out how to read the sentences. And the harder I tried the more my head ached, right around the temples.

A word of advice to graphic designers, if you're creating a print piece for readers suffering from brain abnormalities -- use a big font. And space out the lines. Take it from me. I almost busted my aneurysm just trying to read the damn things.

"Can you read it out loud?" I asked my mother. "Then we all can hear it."

I handed the brochures back to her and she began:

Therapeutic Embolization is a relatively new method of treating a variety of conditions that may cause, or may have caused, a stroke, or neurologic damage, including abnormalities of blood vessels, tumors or bleeding. Materials can placed in blood vessels to open or close...


"Wait a minute," I interrupted. "Did you say can placed?"

"That's what it says," my mother answered. "Can placed."

"They can't even afford a proof reader," I said. "I don't know about these people."

"You're hiring them to correct your brain, not your grammar," my mother said. "Now listen."

I sat there, in bed, listening to my mother read to me for the first time in 25 years. I heard some things that I liked, such as:

Before the actual treatment, a test treatment is performed. In this way, the expected outcome can be confirmed.

And I heard some things that only made me more nervous, such as:

It has been estimated that if 5 people suffer a aneurysm rupture today, in one year, only one person will be alive and well.

I felt better when my mother finished reading the literature, but still unsure. I kept hearing words like investigational, and research and not yet considered routine. I had plenty of questions too.

"What time did he say I could call him?" I asked.

"At 10:30 in the morning," my mother said. "He said he's usually done with his first procedure of the day by then."

That night Dr. Raggone and I discussed the surgery.

"I talked with Dr. Pyle-Spellberg this afternoon," he told me. "Have you made a decision yet?"

"Not yet," I said. "I want to talk to him first. I'm supposed to do that tomorrow at 10:30."

"Okay, but remember," he said. "The clock is ticking."

"That's not the clock," I said.

I woke up on Tuesday morning, nervously picked at my breakfast and stared at the clock. My Aunt Margaret came by visit. My mother was still at home, attempting to finalize the insurance paperwork. At 10:30 I dialed Dr. Pyle-Spellberg's number. Just the act of pressing the buttons 2-1-2, the area code that I considered to be home, made me feel like this was going to be the right choice.

The doctor's administrator answered and told me that he was still in surgery, and that he would call back as soon as he got out.

"Thanks," I said. "The sooner the better."

A little while later a social worker from the Discharge Planning Department came by, with some paperwork for me to sign. On the line marked Discharge to: she checked the box that said Other Hospital.

"So where are you headed?" she asked.

"I don't know yet," I answered.

A little bit before 11 AM the phone finally rang. I was still talking to the social worker, so my Aunt Margaret answered.

"This is William McKinley's room," she said, like my executive assistant.

"It's Dr. Pyle-Spellberg at Columbia Presbyterian," the caller said.

"One moment please," my aunt replied. Then she handed me the phone.

"Hi Doctor, it's Will McKinley. Thanks for calling back."

"It's my pleasure," he said. "How are you holding up?"

"Fine, fine, I answered. "I just had a few questions I wanted to ask you, if you have a moment."

"Definitely. Go ahead."

"I guess the most important question is, does invasive surgery have a more predictable outcome than the Therapeutic Embolization?"

"No," he answered. "The patient is not fully sedated during the procedure. And before we permanently seal the aneurysm we inflate a small balloon in the artery to seal it off. Then we do a few tests on you to determine if there is any loss of function. So in that sense, the outcome is very predictable."

"And by loss of function, what exactly do you mean?"

"Brain function," he said. "Your aneurysm is located in an area that controls speech and memory. So we will make sure you can speak properly and answer a few basic memory questions before we do anything permanent. There is a fair amount of testing that goes on before, during and after the procedure."

"Okay, that sounds good," I said, "Now can you tell me a little bit about how you seal the aneurysm?"

"I know that you had an angiogram recently," he replied. "It's basically the same process. We place a catheter into the artery that goes into the leg under x-ray guidance. And then we use fluoroscopic visualization to guide it to the area of treatment. It's like following the path with a moving x-ray. Then, when we reach the artery where the aneurysm is located, we occlude it with balloon, test function and, if everything is okay, we seal it with a glue-like substance."

"And that's my next question. What kind of glue. And does it last forever? Or am I going to have to do this again at some point?"

"Actually it's not that different than Crazy Glue," he said. "It's a medical grade superglue. It's still somewhat investigational, but it is FDA-approved. And we have never had a case where the glue didn't hold, or ruptured, or needed to be replaced."

"So it's not like a silicone breast implant, where it's going to seep into my blood and poison me?"

"No, not at all," he said. "It's safe and reliable."

"Okay," I said. "All of this sounds good to me. So what are the next steps?"

"I'll have my admin look into a bed for you. Once we know that one is available, she will arrange for transport from St. Francis to Columbia Presbyterian. Assuming that can happen today, then tomorrow we run you through a battery of tests and, if all goes according to plan, we will do the Embolization the next day. Sound good?"

"Yes, I said. "Sounds good."

"Okay, I'll have someone from our office get back to you as soon as we have an answer on a bed," he said. "I'm looking forward to meeting you."

"Thanks," I said. "I'm looking forward to it as well."

"So, what's the plan?" my Aunt Margaret asked after I hung up the phone.

"I'm going to go to Columbia Presbyterian," I said. "Assuming that they have a bed for me in time."

"What if they don't?" she asked.

"I don't know." I said, looking at the brochures on my bedside table. "I guess I'll cross that bridge when I come to it."

A few minutes later, Nurse Maria came into my room.

"Okay Will, your ambulance is here," she said.

"My ambulance?" I said. "Which ambulance?"

"What do you mean which ambulance," she replied, as two EMTs rolled a gurney toward me. "The one to take you to North Shore Hospital. For your brain surgery."

9.22.2008

CHAPTER 40

Every year I look forward to the long Thanksgiving weekend.

Except in 1997. That year, I couldn't wait for it to come to an end.

I've never been a particularly patient person, but being forced to spend four days in a hospital room, waiting for answers - with the knowledge that I could potentially die at any moment? That's the kind of thing that can make for a stressful weekend.

When I was a kid and some bad thing would happen to me, my mother would tell me how it was necessary, how it was helpful, how we learn more from our troubles that we do from our successes.

"It's a learning experience," she would say, every time, without fail.

She used that schtick to justify all kinds of trials and tribulations throughout my young life, but she knew better than to dust it off this time around. I think it's fair to say that, by this point in our story, I had learned all I needed to learn.

Or maybe I hadn't. I'll never know. What I can say is, I had already dodged a bullet to the heart. Now I needed to dodge one to the brain. Then, and only then, would my learning experience be complete.

I allowed myself a few minutes of crying that Thanksgiving morning, but only a few. Any more would have been self-indulgent and counter-productive. Don't get me wrong. I'm very pro-crying. I think most people don't cry enough in life, particularly guys. That's why we die younger than women. Men spend their whole lives suppressing their emotions in an effort to be manly, and then it eventually kills them. Women don't do that, and so, they live longer.

My theory kind of falls apart when you extend it to gay men. If you believe my theory, gay men would live just as long as straight women, but they don't, as a rule. The caveat of course is that gay men often drink, smoke and do drugs (at least the gay men I've known do), so that unhealthy lifestyle factor negates the health benefit of being emotionally in-touch, which means that they are doomed to earlier death, just like us dumb, emotionally out-of-touch straight guys.

Did you get all that? Good.

Clearly, there is not a lot of science backing up my theories, so you'll just have to go with me on this. I'll say it again: men should cry more. I don't mean we should break down and wail and weep, but the shedding of a tear every now and then helps to keep the emotional pipes clean.

Speaking for myself, I've always been an emotional guy. It started way back when I was an infant. I know, everyone is emotional when they are an infant, but with me it was different. Apparently I cried excessively the day my prospective new parents met me for the first time, at the Nassau County courthouse, back in the winter of 1969.

This is a story my father loves to tell:

"We're sittin' there with the social worker, you know, who was a very nice black woman. I forget her name. Very nice girl. Anyway, they bring you into the room, and you're cryin' and cryin' something terrible. Then they pick you up and take you right out of the room! And I say, 'What happened to the baby? Where did they take him?'

And the social worker says, 'Sometimes people don't want to adopt children who cry too much."

Apparently my parents reassured the social workers that they were completely prepared to deal with a crying baby. Ha! Clearly, they had no idea what they were in for. From the moment they brought me home, the crying began, followed by the red-faced sweating, and the hitting and the acting out. Who knows why I was such a whirling dervish when I was a baby/toddler. Was I testing my parents to make sure they wouldn't send me back if things got too bad? That's a lot of deep thinking for a 2 year-old to be engaging in, but I wouldn't put it past me.

As I got older, I got a better handle on my abject emotionalism. No more screaming fits on the floor of Bohack's SuperMarket for no apparent reason. I had learned to harness the power of crying. I knew that crying could get me things: toys, a later bedtime, a day off from school. I've always been pragmatic in that way. Whatever works is okay with me.

Another thing that started very early for me was crying at the end of things, like TV shows, movies or plays. It all began with a British TV series called The Adventures of Black Beauty, which aired on American television on Saturday evenings in the early 1970s. Apparently I would cry at the end credits every week. My parents thought it was because I loved the show so much, or because the end of the show signaled my impending bedtime. But I don't think so. My habit of getting weepy at the end of things continued long after I was no longer subject to a time-specific retirement.

I think the idea of a particular story coming to a close has always touched something very deep inside of me -- the place that fears endings, because endings bring change, and change brings uncertainty.

What do you do after The End? Where do you go? What happens if it doesn't work out? Those are questions I have never been comfortable with. And so I avoid change and, as such, I avoid uncertainty.

But there was no way to avoid uncertainty on that long Thanksgiving weekend. I would have to deal with it and accept it, or I would drive myself and everyone else crazy.

My parents did everything they could do to keep me calm. On Thanksgiving Day, after a truncated dinner at my Aunt Margaret and Uncle George's, my sister, mother and father came to the hospital bearing Tupperware containers filled with turkey and mashed potatoes. My father heated everything up for me in the tiny microwave in the nurse's break room.

By this point in my stay at St. Francis, I had earned certain privileges that other, less-seasoned patients did not have. And I used those privileges whenever possible.

For example, as of Friday, I had not taken a shower in 38 days. This was driving me crazy. There is only so much you can do with a washcloth in a bathroom sink to keep yourself fresh, and one thing you should know about me is, I always like to be fresh. So I asked Maria for a post-Holiday treat.

"Maria, I have that not-so-fresh feeling, if you know what I mean," I said.

"Yes, I know what you mean, and no, I don't think you have that problem," she said.

"Okay, maybe not. But I would really really really like to take a shower."

Maria started shaking her head. "You can't because of the Heparin. You can't take a shower while you're connected to an I.V. pole."

"I know that, so how about I disconnect from the I.V. pole for, like, five minutes? I was disconnected for a couple hours when they did the angiogram, and everything worked out okay, right?"

Cut to ten minutes later: "Okay, I talked to Dr. Sisfein and he said it was okay just this once," she said. "But I have to..."

"Wash my back?" I interrupted.

"No, they don't pay me enough for that. I have to stand right outside the door to make sure you don't get dizzy and fall over."

"I've been taking showers for 29 years," I said. "I'm not going to get dizzy."

I was wrong. I got dizzy.

Maria had walked me to a shower room a few doors down the hall, where she removed the IV from my arm and bandaged it up. I felt free, unbound, released from the shackles of poles, monitors, IV bags. It occurred to me that I could race out the door and never look back. But I didn't. Instead, I opened the door to the shower room, walked in, dropped my dress and turned on the water.


It took about 30 seconds for me to start getting dizzy. Maybe a minute. I don't know if it was the heat, or the feeling of the the water beating on my face, or the aneurysm in my brain, or some sort of self-fulfilling prophesy. I wasn't about to lose out on my brief shot at freedom, so I sat down on the floor of the shower, and proceeded to take a modified bath in an inch and a half of water.

It wasn't what I planned, but it was sure better than what I had become accustomed to. After about five minutes I heard a knock on the door.

"Okay, time to get out," Maria's muffled voice said. "Are you dizzy yet?"

"No, just fine," I lied. And then I grabbed hold of some sort of strap or harness that the shower was equipped with, perhaps for this very situation. I eased myself up, and on to the changing bench. I dried off a bit, put my gown back on, and opened the door.

"Okay, let's go," Maria said. "Time to hook you back up."

"I may need some assistance with standing," I said, sounding a bit like Dudley Moore in Arthur.

"You see? I told you you would get dizzy," Maria chastised. "You should listen to me sometimes."

"A point of clarification," I said. "I listen to you at all times. I may not do what you say, but I always listen.

"You should really be a comedian," she said. "I think you missed your calling."

"You're the second employee of this hospital to tell me that," I said.

I somehow managed to ride out the next two days without getting thrown out of the hospital, or jumping out the window. On Monday morning my mother finally got the approval for the experimental brain surgery from the Utilization Management Department at Cigna. I have no idea how she did it, considering I couldn't get them to pay for my weekly shrink appointments.

Brain surgery is covered, brain shrinking is not.


I talked to my mother on the phone around noon, before she and my father headed into the city for the appointment at Columbia Presbyterian.

"Anything you want me to ask him?" she said.

"Yeah. I'd like to talk to him. If everything goes well, I'd like to talk to him on the phone. Ask him if I can do that."

"Okay, I'll call you after we meet with him," she said.

The appointment with Dr. Pyle-Spellberg was scheduled for 2:30 PM, so it was time once again for clock watching. At some point that afternoon Dr. Chalof came by for a visit.

"We're arranging for your transfer to North Shore tomorrow," he said. "Unless there's been a change in plans?"

"Not yet," I said. "But my parents are at at Columbia Presbyterian right now meeting with the head of the department of Neurointerventional Radiology for a third opinion."

"Okay," he said. "But I still maintain what I said last week. We have to act on this by tomorrow."

"I know, I know. We're working on it."

At about 4 PM the phone rang. It was my mother.

"What's going on?"

"I think this is going to work," my mother said breathlessly. "He said that they could treat the aneurysm non-surgically and permanently seal it with glue."

"Did you say glue?" I asked.

"Yes, it's some sort of super glue that they transport through a catheter all the way up to the aneurysm. The glue seals it and they don't have to put in metal clips. That means no surgery. There's only one problem."

"Somehow I knew you were gonna say that. What is it?"

"With the metal clips, they can put them on both sides of the artery, stop the blood flow and wake you up to make sure you haven't lost any brain function. With the glue, once it's in, it's in. It's permanent. There's no undoing it."

"So you mean I have to essentially role the dice?" I asked. "How can I make a decision like that?"

"He did say that there is a possibility of temporarily sealing the artery with a balloon, to test loss of function, before they put in the glue. But he can't guarantee it will be possible to do that."

"Great. More question marks" I said. "Did you ask him if I could talk to him?"

"Yes. He gave us some things for you to read first. And he said you can call him tomorrow morning."

"Tomorrow morning I'm gonna be in an ambulance on the way to get my head cut open at North Shore Hospital," I said.

"We'll stall the ambulance," she said. "Because I think this is what we've been looking for. This is the answer to our prayers."

"It better be," I said. "Because I am just about out of time."