Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (9 page)

THE DRIVER SILENCES
the blaring siren as the ambulance squeals to a halt at the emergency entrance. You feel like a prisoner in the metal cage of the ambulance cargo area. You hear the latch on the rear door click. Two attendants silently roll your wheeled bed through the automatic doors and into the corridor.

The lights of the ambulance continue to whir as you are rushed to an examining room.

“Why am I back here? I’ve already done this.” Are you dreaming? You feel as though you’re watching a sci-fi movie where someone keeps hitting rewind, play, rewind, play, over and over.

“I’ve already seen this movie.” You hear a voice in the room say, “She might be hallucinating.” The nurses are going about the business of taking your vital signs and talking among themselves. “She was sent from the rehab hospital. They were concerned that she might be about to stroke again. Her neurologist is Dr. Neuro. I called him at home. He wants her admitted once she is stabilized.”

You’re not there.

Why does the IV feel so real in this dream—sticking, poking, prodding. As usual the phlebotomist has difficulty finding a vein.

Suddenly, you realize that Jim is beside you. “Thank God you’re here, Jim. I thought I was dreaming. Are we going back to the rehab hospital now? Joe brought pizza.”

“You’re being admitted for observation. Dr. Neuro is going to see you in the morning. Don’t worry, it’ll be okay.”

You both wonder if that is so.

It’s after two in the morning when you are moved to a room. Jim kisses you good night and heads home, still wondering. You’re exhausted, but you can’t sleep.

Edie and your mom were in a bridge club for thirty years. She made you things when you were a little girl. Clothing for your dolls. A doily for their tiny table. Edie is on your mind a lot for some reason.

“WHAT ARE ALL THESE BLOOD TESTS FOR
and who ordered them?” You are staring at a little bearded nurse who is trying to smile.

A different young fellow. A new and yet-to-be-experienced level of incompetence. Your veins are virtually impossible for even seasoned professionals to locate. Yesterday your mother left during one of the blood draws, while you were talking to the guy doing it in your Dracula voice and asking if he was related to Bela Lugosi. She didn’t laugh, even though he did. She simply couldn’t watch it anymore. She probably slept poorly last night. You know how she is about seeing you get poked and prodded constantly.

Nurse Beard smiles harder. “Ma’am, one of the residents ordered three tests for us this afternoon, okay. So could I get you to just go ahead and hold out your arm, please?”

You glare at him.

“Actually, no, you can’t have my arm, or my blood. It’s time for me to ask you questions. Less than five minutes ago, had you ever set eyes on me before? No, you hadn’t. Right? Right. Now. Time for another question. What the hell is the resident’s authority? No answer? No answer. Third question. I’ve already had these three blood tests. True? Don’t just stare at me, take a look at the goddamned chart. True?”

Shuffle shuffle shuffle.

“Uh…accurate, yes.”

You have successfully split the entire neurology staff into factions. Each one has a theory. Each one has a diagnosis. Each one has an agenda. They are each pricking you like a pincushion to prove how smart they are. And they are not even reading their own notations. You have a feeling you know which one of them it was who ordered these tests, too. The brisk little brunette with her hair tied in a bun who never talks to you, only past you, never looks you in the eye. You wish she was close enough to slap.

“Please tell the resident I’m refusing any more blood tests from anyone other than my primary neurologist, Dr. Neuro. And while you’re at it, tell the resident who ordered these tests that if she wants to be considered any kind of doctor, she should take thirty seconds to look at a patient’s records before ordering tests. Okay. If she gives you a hard time, tell her to see the patient, me—the boss.”

He leaves.

DR. NEURO,
your neurologist, visits you. The only person in a white coat who seems capable of looking you in the eye. Tall, patient, calm Dr. Neuro. You remember liking him and trusting him, which is an achievement at a time when your memory is not always totally reliable. He makes you feel safe. He has huge hands. His right hand amazes you when he extends it for you to shake.

“You missed me and wanted me back, right?” you joke. He smiles, and nods, and asks about your symptoms. You tell him everything you can think of. He writes down what you say.

He tells you Dr. Jerk’s diagnosis is still very much in doubt. Dr. Neuro, of the huge hands, tells you he has arranged for some tests to try to clarify Dr. Jerk’s theory. He apologizes for the number of tests they’re running on you. He apologizes for not knowing everything.

He means it. You can tell.

As it turns out, vasculitis (Dr. Jerk’s favorite disease) commonly presents in the lower intestinal organs. Dr. Neuro wants an ultrasound of your lower organs to look for evidence of vasculitis. If that proves negative, it will be time for another angiogram.

Then Dr. Neuro tells you he won’t be at the hospital for the next week, due to an unexpected family situation. He reassures you, saying that you’ll be in the care of the head of the neurology unit.

You are surprised by how nervous this piece of news makes you. You know he has put you in the best of hands while he’s gone, but you feel more secure with him than with the head of neurology.

You realize you have confidence and a sense of security with Dr. Neuro. You don’t want to keep repeating your medical history over and over again with new people. He assures you that the covering doctor will be informed personally about your case. He asks if you need anything. You tell him, “Yes, I need my left side back.”

He smiles and squeezes your hand in his huge hand. He goes.

It’s night and you’re all alone. The hall outside your room is dark and empty.

Everything stops. The hospital is so quiet it frightens you. A storehouse of wounded strangers. You wonder what other lives have been altered forever by some catastrophic illness or injury. The neuro floor must have some gruesome stories.

You wish Jim were next to you. You want to lie on your side with your arms around him.

IN ADDITION TO THE GAMUT
of tests that awaited you when you returned to the critical care hospital, they are asking you to consider approving a brain biopsy. The neurology staff is recommending this procedure to determine if you truly have cerebral vasculitis.

Since you refused another chemotherapy treatment at the rehab hospital, Dr. Doogie, your radiologist, has taken a personal interest in you. He’s come to visit you on his days off to help you sort out the medical questions. One of those questions is pretty basic.

“What,” you asked, “is a brain biopsy?”

“It’s when a burrow hole is drilled into a quiet area of the brain, and sample brain tissue is removed.”

Okay…

“What,” you continue, “is a quiet area? There’s nothing quiet about me—unless maybe you count the whole right side of my brain, which I guess is now considered dead.”

“A quiet area is a spot in the brain that would not affect any functions. It’s usually behind the ear.”

“See,” you explain to Dr. Doogie, “I’m thinking I need to keep whatever I have left, quiet or not.”

“You want conclusive evidence about whether you’re suffering from this incurable disease, right?”

“Right.”

“Brain biopsy is the way to go.”

“The only way to rule this out?”

“Yes.”

The possibility of certainty is very appealing to you.

“Okay. Then poke as many holes as you need to. I just want a goddamn diagnosis.”

You have been poked, prodded, and tested for so long in a hospital environment that you just want a straight answer. You just want to get it over with.

BUT JIM CONSULTS
with his doctor brother-in-law, Pete, who tells him that a brain biopsy is an invasive procedure that could cause all kinds of complications. When he hears this, Jim is against doing it. He feels that if the test isn’t going to be conclusive, it isn’t worth the risk.

Dr. Doogie then comes back to explain that the results could come back negative, but that you still might have the disease in a different area than the one that was sampled.

“So will they poke holes all over my head like a colander to keep checking until they find something?”

“No, there would only be one biopsy at a time.”

“What would you do if it were you?”

“I don’t know. It’s a tough decision. Cerebral vasculitis is extremely rare and it’s already been determined there’s no evidence of the disease in your lower organs.”

Dr. Jerk saunters into the room while you are discussing the biopsy with Dr. Doogie. You can tell he’s miffed that you’re even considering it.

Dr. Jerk has made the preliminary diagnosis of possible vasculitis, but without a brain biopsy showing the diseased cells, he is “working on an assumption.” He insists that you be treated with the standard drugs used for vasculitis.

He is not pleased that you have refused the second chemotherapy treatment while in the rehab hospital. You are still arguing that you don’t want to push it: Additional chemotherapy seems like an extreme step, and a great way to make absolutely sure you become sterile.

You want to have another child.

He brushes this off—again. “At least you have Rory.” As if to say: Isn’t that enough for you? “I have an only child,” he continues, “and it’s great.”

“Well,” you counter, “that’s your choice, not mine, and I don’t want science changing my options.”

“Don’t you think it would have been wise to consult me about the brain biopsy?” Dr. Jerk asks. “All the other doctors are still testing and diagnosing you. I’m actually treating you.”

Sensing a fight in the offing, Dr. Doogie leaves the room.

“That’s why I didn’t consult you,” you tell him, looking him straight in the eye. “You’ve already made up your mind about what I have. I don’t believe your diagnosis is correct, and Dr. Neuro is not so sure either. At least he knows enough to say when he doesn’t know something. What if the biopsy proved negative? Then what would your treatment be for me?”

“It would be the same either way—chemotherapy monthly for life. That is the correct treatment for your disease.”

Talk about not letting the facts get in the way of your work.

“Look,” you say, “I want to be absolutely sure I’ve got this disease you say I have before I poison my body for the rest of my life. My gut is telling me I don’t have this. I trust my gut, which is my consciousness, which is ultimately my soul. You’ve heard of a soul, right? I mean, did you, you know, get one during orientation?”

“The only way to get a conclusive diagnosis is through your autopsy,” Dr. Jerk snarls.

You’re stunned. “Well, I’m not going to rush to have that procedure.”

Dr. Jerk snorts, and then bolts out of the room in a huff.

Your relationship with him, now openly contentious, has been deteriorating for so long that it is, you can tell, at odds with your becoming healthy. He is so bent on being right that he simply can’t see anything but his own opinion.

A FEW MINUTES LATER
Dr. Jerk is standing at your bedside.

“I’ve set up an appointment with Dr. Guru in Ohio. He’s the premier expert on vasculitis disease. He actually is doing me a favor by seeing you. I’ve already consulted him. You will fly to Ohio to have him examine you. Of course, he deserves to get paid for his time.”

“When did you make this appointment for?”

“When you’re released from the hospital in a few weeks. You should feel privileged to see him. He’s going to confirm my diagnosis.” Dr. Jerk was giddy with pride that he had such a powerful connection.

“Wait a minute. I’m supposed to fly to his hospital, have Jim take time off and leave my three-year-old, and go halfway across the country to talk to a guy who you already know is going to confirm your diagnosis? I don’t call that opinion, I call that collusion. I’m not doing it. Anyway, I’ve already decided I’m not going to do the brain biopsy. Jim doesn’t want me to; it’s too inconclusive.”

“You’re making a mistake by not seeing Dr. Guru. He doesn’t consent to see just anybody.”

“Well, I don’t consent to see him. It’s too bad he won’t get the pleasure of meeting me.”

“You’re being an obstinate fool. I’m trying to help you.”

“Obstinate. That’s a new label for me, I already have denial and impulsive. I prefer determined, positive, and hopeful. I’ve got news for you: I want to have another baby, and I’ll be Rollerblading with Rory before too long.”

“Make no mistake, my dear. You really are in DENIAL.” He turns on his heel and leaves.

Just as the door starts to close, you holler, “MAKE NO MISTAKE. I’M NOT YOUR DEAR.”

THE CRITICAL CARE DOCTORS
establish that you did not have another stroke. You realize that the shooting pains that occur intermittently in your head do not necessarily foretell another stroke. Although the medical staff doesn’t say so, you conclude that you had a panic attack when you were at the rehab hospital. You come to learn that these attacks will plague you. You devise methods to calm yourself when the attacks occur. Breathe. Breathe. Go somewhere pleasant. Snatch a good memory, relive it. Narrow River.

Five days have passed since you were readmitted to the critical care hospital. It’s time to resume rehabilitation. The thought of leaving this safe haven to return to the dismal rehab institution depresses you. Not only is the critical care staff attentive, but the food here is so much better.

The first time you were sent to the rehab hospital you were excited to be moving on, taking the next step in your recovery. You didn’t know what to expect. Now you know what’s ahead of you, and you wish you could skip Go and head for home.

The ambulance attendants hoist you on the bed with wheels, strap you in, and take you on another expensive taxi ride. This isn’t the ride of your life, but the ride
for
your life, as you are yet again ferried from one hospital to another.

They bring you back to the neurology floor. This time you don’t joke with the attendants that they’ve taken you to the wrong place. You remain quiet. What has happened to your life?

YOU ARE ANNOYED
at your own body generally, and at your head specifically.

You like wearing the cool headdresses that people keep bringing you. One aide from Haiti has a talent for doing your headdress, and when she’s working, she sings Haitian songs to you. You like it when she shows up. It makes you feel like another person, which in your current situation is a good thing.

ONE DAY YOU ARE SITTING
in bed feeling good, having just been sung to and having just had the scar on your head concealed by an intricate Haitian-wrapped headdress, when a tall woman walks into your room, looks down at you in the bed, and says, “Are you Julia Fox from Andover?”

Stunned, you say, “Yes.” She does look familiar.

“I’m Misty Mouse. I went to high school with you.”

Her face is reassembling itself for you into something familiar—but with two decades layered on top.

Misty. This is weird.

“What are you doing here, Misty?”

Maybe they’re planning some kind of reunion meant to keep your spirits up? What is going on?

“I work here. I’m a physical therapist. I’ll be by to check in on you now and then, okay?”

Misty. Yes. You went to high school together. Math class. Miss Corcoran. But you were in a class of five hundred kids.

“You recognized me?”

“Sure.”

Gentle eyes. Helped you with math homework. She was very popular.

“Did I look this bad in high school, that you could recognize me twenty years later?”

THE FOURTH FLOOR
is the neurology floor and there are a lot of brain issues. One particular woman wails and screams constantly. You are fortunate to have a single room so you don’t have to share anyone else’s misery. Your door can shut. Even with your door closed, though, you can hear The Wailer. Two in the morning, ten in the morning, four in the afternoon. Doesn’t matter. The Wailer howls and bellows.

One day you ask a nurse, “Does that woman have a roommate?” Yes, she does. You can’t imagine how the roommate handles it.

Then you ask, “The lady who’s screaming right now, is she aware of what she is doing?” Yes, she is. The nurse explains that she just can’t communicate with words anymore. But yes, she knows what she’s doing.

She knows what she’s doing. She does it anyway.

It surprises you that this fact makes you as angry as it does. But she is affecting everybody on the floor, and she is choosing to howl like that. The Wailer is driving her roommate, and you, and everyone else on the floor absolutely mad. And she is doing it on purpose.

She howls out again, and breaks into little sobs.

“What a bitch,” you hear yourself say.