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.”
Return to Sender
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 t
o 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.
Pardon Me, but You’re Incompetent
YOU ARE IN A HOSPITAL BED. Again. The halls are empty and quiet. Must be a weekend or late at night. Or both.
A young male Asian nurse is by your side, attempting to draw blood. You can’t believe the pain; he’s missing the vein, he’s using a heavy-gauge needle, and he’s obviously inexperienced with difficult veins, which, you have learned in recent months, you have. He seems to imagine that you are a bolt of fabric being pinned into clothing.
“What time is it?” you ask. There’s no window in this room.
“A little after two in the morning,” he says.
“Is there another nurse on call?”
He looks up from your arm and stares at you.
“Why?”
“Just tell me whether there’s another nurse available, okay?”
Silence.
“I guess so.”
You look him in the eye. “You have to stop. I’m sorry, but I need you to get the most experienced phlebotomist you can. You’re not having much success with this blood draw, and you’re really hurting me.”
You don’t know why you feel you have to apologize for his ineptitude, but it seems to make your request a little nicer.
A Lot of Fuktion
JIM IS CONCERNED about your separation from Rory. He goes to great lengths to make sure Rory sees you regularly. He makes attempts to keep it light for Rory by bringing in books for you to read to him in your bed.
“Look, Mommy, I brought you Elmo to keep you company so you won’t be lonely,” Rory exclaims excitedly as he enters your room. “He has a boo-boo on his head too and he needs to stay in the hospital with you until you both get better.”
You eye Elmo’s red, furry, limp body. There’s a Band-Aid on his head. It makes your eyes well up, and you smile at the same time.
“Well, we’re both going to get better real soon. What book did you bring for me to read to you?”
He hands you Bob the Builder and Jim props him up next to you in bed. You have difficulty balancing the book with one hand, and you can’t turn the pages.
“Rory, can you help read the book with me and turn the pages?”
“I don’t want to read my books here,” he says. “I want you to read them to me at home.”
You glance at Jim, whose face is stony and sad.
“Right now,” you say, “we get to read stories in this special bed together—but only for a little while. Look at this magical bed, the buttons make it go up and down.” You show him the buttons and his attention is diverted to pushing the head up and the feet down. He’s thrilled with the buttons, and delights in the ride he’s giving you.
MOM TELLS YOU that Rory has made a habit of asking which hospital he’ll be going to today, and it makes you feel helpless and sad. On one visit Rory notices all the construction activity happening around the hospital, shakes his head, and matter-of-factly states, “There’s sure lots of fuktion going on around here.”
It seems accurate enough.
BACK WHEN YOU WERE WORKING FULL-TIME, you felt guilty shuffling him off to your friend Berbie’s or your mom’s. You’d have a Friday-night date night where you and he would have a burger in the food court and then go for a ride on the merry-go-round in the pavilion. Now you have a completely different set of guilty feelings. Back then, you could have changed the workaholic behavior, but you didn’t. Now there seems to be nothing at all you can do to improve the time you spend with him.
Honey
WHAT IS THAT thing behind the wall? That thing is beautiful, but what does it do, and how does it make the wall shudder that way?
Window shut. Night dark. The ward is quiet, humming at you softly. The wall vibrates and breathes in and out and wisps into a fog and then behind it are two eyes.
Oh, right. They gave you something for sleeping.
The wall is completely gone.
Edie is looking at you, but it’s hard to say when or why or where you are, how old either of you are. She must be older than you, but it’s hard to tell now, looking at her. Just Edie’s eyes, that’s all you see.
You remember when Edie told you, “It will be okay, honey,” when she picked you up from the playground when you fell as a little girl and your knee was suddenly shiny with blood and you cried out.
You remember liking when Edie said “honey.” She said it to you a lot.
You remember when Edie said, “I call you honey because I love you.”
It Ain’t Spring Showers
YOU GET FRIENDLY with all the aides at rehab and start lobbying them to put you first on the shower list.
There is a good reason for this politicking. If you are not one of the first few to be showered, there is inevitably a huge backup; sometimes the shower wheelchair is in use and when your turn comes you have to use a potty chair. The shower chair is better than the rolling toilet chair because it has hooks to hold your shower stuff and it doesn’t look as degrading as you’re wheeled down the hall.
Being wheeled around in a toilet chair in a worn-out hospital johnny draped like a shawl around you is your current nominee for Indignity Number One. The whole arrangement leaves you completely exposed to any curious hallway passerby. You know you truly look brain damaged. You look like Jack Nicholson in One Flew Over the Cuckoo’s Nest after he receives shock treatment and is faking being deranged. But your look is the real thing.
You have learned to stare down anyone who gazes at you, but you’d rather take the first shower and avoid the spectacle of being rolled around half naked with a bucket of toiletries on your lap.
THE SHOWER ROUTINE itself is humiliating. You are rolled to a dank shower room. It is the size of a large walk-in closet, with a shower-head on either side of the doorway. It is dim with mildew green tile, and it is cluttered with other people’s handicap equipment. (You have no idea how the stuff ended up being left there. Did someone need it coming in, but not going out?)
In this room, you’re hosed down in your chair like a car at a carwash. It’s a depressing experience. You feel like a prisoner in your own body, like the prisoners you can see caged in the jail across the street from the hospital.
Brushing your teeth in the shower room always causes frustration. Inevitably, either you or the aide drops the toothbrush, and as you stare once again at your toothbrush, which is lying on the floor of the filthiest shower floor it has ever been your duty to scan, you always feel like screaming.
The aide picks it up and puts it on your lap. Like you would ever use it again. Only if you were brain damaged beyond reason. Which you are not. Frustrated, yes. Confused, yes. Grossed out, yes. But not that brain-damaged.
You beg your folks to bring you a fresh supply of toothbrushes.
Eventually you have your mom tie an idiot string that connects your wrist to the toothbrush. Problem solved.
THIS MORNING, you are in the shower chair, and are being wheeled to the morning shower by a nurse who is new to the job. You need to have a bowel movement as you are being wheeled to the shower room. It’s an opportunity that you can’t afford to miss since you have had a history of constipation.
The nurse lifts you onto the toilet located directly across from the shower room. She leaves the room door wide open, however, and neglects to pull the curtain shut, leaving you completely exposed. Hospital staff, patients, and visitors are passing by in the corridor, getting an unsolicited peep show.
You say, “Please shut the door. I’m not an animal in the zoo.”
She does.
“This really sucks, but I can’t wipe myself. Could you please help me? Maybe if you pretend I’m your daughter, you’ll think of me as a human being.”
You can’t wait to get home full-time.
You Have to
Be Dead to Get That Arrangement
YOUR FRIEND PAUL’S HUMOR leans to the macabre. He contacted several florists requesting that they send you a cross made with flowers—the kind of arrangement that people lay at a graveside or deliver to a funeral parlor. None of the florists would go for it because the person he wanted the flowers delivered to was the same person whose name he wanted on the cross.
He tells you about this during a visit, and you both laugh hysterically. You’re kind of glad he didn’t manage to do it, though, because it wouldn’t do your family members much good to walk into your room and see a huge funeral display. But when you think of him trying earnestly to convince a florist to send a funeral arrangement to someone who’s still very much alive, you feel very, very grateful to Paul for his ability to laugh at the dark side of things.
This, you realize, is the kind of stuff that will keep you going. After all, what is the alternative? To hold court in the hospital with all your friends and relatives in a state of unrelenting gloom? To bring everyone down with you? Where would that lead? Eventually people would only visit out of obligation, or stop coming altogether.
“My goal,” you tell Paul, “is to be that person you’d cross the street to see, rather than the person you’d cross the street to avoid.”
Where You Aren’t
You remember when Edie made the bedding for your son Rory’s crib.
Edie has very honest eyes. She is looking at you right now and you are looking back and her eyes say, “You’re not in a hospital,” but they don’t need words to say it.
You say, “I’m not?”
Her open eyes say, “No. I’m in a hospital, you’re coming to visit me.”
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry Page 9
