It’s not really you. Your left side lies frozen. You wonder, Why are they using straps on me?
You try to turn again. No doubt about it now. Not only will your body not obey you—it is also totally numb on the left side. It doesn’t exist.
This is what you found out later: Your mom had been saying the rosary while you were having emergency brain surgery. Your other family members had been mostly pacing. One of the neuro-surgeons from the operating team appeared in the room where your family was sequestered. “Who are all these people?” he asked, stepping into the room where sixteen people waited. “We’re her family,” your brother Jeff replied.
“She is in critical condition. She appears to have had a seizure and she had heart failure. Her hemorrhage is massive. We’re doing life-saving measures to evacuate the blood. If she makes it, she’ll most likely need further reparative surgery once she’s been stabilized.”
“What do you mean ‘if she makes it’? She’s healthy, young, and strong,” Jim said incredulously.
“What I’m saying is that she may not survive the operation. This procedure has a high mortality rate,” the surgeon said solemnly. He turned and left as abruptly as he’d entered.
Silence.
As if to break the tension, your brother Joe blurted out, “Let’s all send her some positive energy.” To which your father instantly responded, “Shut the hell up, Joe.”
YOU HAVE TUBES COMING OUT of everywhere. You move your hand to your face to feel where the tubes go, but time shudders and you’re gone again.
You will definitely be someplace after this part.
You will occupy space again and time will pass for you again.
When you get there you will see people who love you.
SOMEONE IS TELLING you to wake up.
“How did she know she was having a stroke? Is she in a risk group?”
“No, not from what’s here.”
“Are you sure that’s what she said? ‘Am I having a stroke?’”
“He’s got it on the report.”
“Is she waking up?”
Silence.
“Are you waking up, Julia?”
WAIT A MINUTE MAYBE that was about the other time there was another time when people who love you were saying wake up Julia wake up there was a time when…
“Hi. We’re going to be your radiology team. I’m Doctor Doogie and this is Doctor Radio. We think you may have an AVM.”
“Arterial vascular malformation.”
“That’s an inherent weakness in the blood vessels.”
“It’s usually congenital.”
“You’re going to have an angiogram.”
Two doctors. Two assistants. They wheel you into the white, brightly lit, sterile room for an angiogram. Whatever that is. There’s music playing in the background, James Taylor’s “Fire and Rain.”
“Not a great song, guys,” you mutter.
“Why’s that?” says Dr. Doogie.
“Why’s that? Suzanne doesn’t make it! That’s why’s that.”
The nurse assistant smiles and leans in so she’s next to your face and asks if you’d rather hear a Carpenters CD.
This gives you pause.
It occurs to you that Karen Carpenter croaked, too.
“Don’t bother.”
They hoist your (foreign) body onto a narrow slab and give you painkillers and strip you naked and shave off your pubic hair and swab you with antiseptics and put a white disk about two inches from your nose. You say, “Before you get started, let’s get one thing straight. I don’t want to hear any ‘oops’ shit from you guys.”
Nobody laughs.
James Taylor sings on: “Suzanne, the plans they made put an end to you…”
“Lie completely still and stay alert. No movement whatsoever.”
“Hey,” you say, “on the left side, that’s going to be no problem, but my right side may misbehave…”
No laughter. They tell you at least five times that you have to be awake and stay completely still. Any mistake could cause internal bleeding and possibly death.
You think, This is a pretty serious group of people I’m dealing with.
They talk among themselves about how tall you are and how long a rod they’re going to need: Dr. Radio says, “Get the eight-footer.”
“Hey,” you call out, “I’m only five foot six! Where’s the extra going to go, through the hole in my head?”
Little pause, then they continue discussing among themselves.
Then they cut a hole in your groin area and start inserting a long, flexible steel rod through the hole into an artery. They snake the rod all the way through, up to your brain. They can see where the rod goes on a display screen in front of them.
They bounce the rod off your femur to make sure the placement is correct. It hurts like hell. You groan.
The assistant asks, “Are you comfortable?”
“Well,” you say, “I’d be more comfortable in a Barcalounger.”
“Better pump up the painkillers.”
They snake the rod all the way up to your brain and talk in little whispers about what they see.
“Hey,” you say, “how’s the fishing? Catch anything yet?”
Then they snake it back out again and the nurse applies pressure to the entry site. She tells you it’s a deep puncture wound and she puts heavy pressure on your groin for at least five minutes so the blood can clot.
You make a mental note to remind your family members not to get an angiogram if they can possibly avoid it.
After all that effort to stay awake, you can’t really sleep when they send you back to the intensive care unit (ICU). Which is actually fortunate since you have to be completely still for eight hours. They sandbag your right leg to prevent movement.
Eventually they unsandbag you and you sleep a deep, black sleep. You have a weird dream about how to become a better person by letting someone staple your head.
When you wake up you need to remain completely still and perpendicular for eight hours. It’s quite a feat drinking from a straw without lifting your head.
After the surgery, you feel as though you’ll explode from the pressure to urinate. After having a rod in your groin, you can’t go on your own. Put a fountainhead on your stomach and you’d rival any Disney display.
Half a Clock
Your mother tells you that Edie is having a hard time. Edie was in a bridge club with your mother for thirty years, and your mother mentions that Edie is having a hard time. You think to yourself, I should really stop in and see Edie.
MORNING SNAPS INTO PLACE and someone tells you to wake up and the doctors are gathered in front of your bed and they congratulate you. You were very perceptive: You have in fact had a stroke. Then they tell you the angio shows no evidence of an AVM. They feel “perplexed” as to what your condition might be.
One of the doctors—your dad says later that he’s very famous—tells you that you should think of your brain’s large and small blood vessels as having berries on them. Then he says he has no idea what that means, since an AVM is no longer a possibility. He promises the team will keep you posted when they know what’s going to happen next.
“Unless my brain beats you to it!” you warn them.
Somber faces on Jim, your brother John, and your dad. Here is one of the leading radiologists in the country shrugging, saying he doesn’t know what you have. Everyone’s quiet. Lots of questions. No answers.
You stare at the doctors. They leave. One of the nurses stays behind.
You tell your husband you’re a little disappointed that you don’t have an AVM, because you wanted a definite diagnosis and you could use some hard information. You must be starting to cry because the nurse wipes the left side of your face. The nurse says you should be relieved that you didn’t have an AVM, since treatment is difficult and can be fatal.
You’re going to be a better person.
SO. YOU DON’T HAVE AN AVM. What do you have? Whatever it is,
it apparently involves having berries on the brain. Unless you’re in a strawberry patch, you think to yourself, berries on the brain does not sound like what you want.
The next morning another doctor describes your brain vessels as “sausagelike.”
“If we’re not talking about the morning menu,” you say, “sausage doesn’t sound good.”
You begin to wonder whether the doctors are hungry and looking forward to breakfast. Next, they’ll be cracking an egg in a basin and saying, “This is your brain, and this is your brain hemorrhaging,” as they scramble the contents.
YOU HAVE BEEN IN INTENSIVE CARE for approximately a week. People come and go and you keep getting medication and time shudders and shimmers and twists as it sees fit.
Morning snaps into place and your family is now visiting you. Flies are swarming around your mom and dad. You keep swatting them with your right hand, the only hand that will move for you. You keep saying, “Don’t you see them? They’re all over Dad’s head.” Waving that right hand, trying to swat the flies.
“No flies on me…but they are sure loving Mom and Dad, aren’t they?”
Silence. Quizzical faces.
“You don’t see them, do you?”
Your parents shake their heads.
Your mind is capable of manufacturing flies. But it cannot manufacture sensation on the left side of your body.
Morning wobbles and collapses and it’s dark outside and Jim is watching as they change your bandages. You don’t know what you look like because no one will give you a mirror, not even Jim. Dr. Neuro has told Jim not to give you a mirror.
It occurs to you that this is not good.
You try to catch a glimpse of yourself in the window across the room.
It’s only a second, the picture you see in the dark night window, but it makes your heart feel hollow and cold. The right side of your head is void of any hair and there is a huge S-shaped incision starting at the top of your scalp and extending below your right ear. The incision is stamped shut with staples.
Was that another illusion your mind conjured up? Or was that really you?
You look away and ask the nurse to pull the curtain on the window so the reflection doesn’t show. She starts to do this but twists into nothingness before her hand touches the curtain.
“TAKE THIS PEN. Draw a clock showing the time ten-fifty. Ten five oh. Draw the clock right here on this sheet.”
One of the neurology residents is speaking to you. Apparently you’re in the middle of some kind of test. Bright daylight again.
Jim says, “Come on, honey. You know how to do this.”
“What time am I drawing on the clock?”
“Ten-fifty. Ten five oh.”
You take the pen and draw this:
Jim frowns and urges you to do it again. The neurology guy takes notes. You don’t want to disappoint Jim. You ask to try again. The neurology guy says, “Okay.”
It comes out the same.
“Now draw a clock with all the numbers, one to twelve.”
You draw this:
Half a clock. It looks utterly wrong. But you can’t think what will fix it.
Nothing exists on the left side of your world. You glance up at Jim. His face is completely crestfallen. You can sense he’s beginning to get an idea of the magnitude of your injury. It’s not just the left side of your body. It’s your brain. It’s your command center.
The neurology guy sniffs and nods and writes something down.
“Okay, let’s try something different. Count backward by sevens from one hundred.”
You take a deep breath.
“Okay. One hundred…”
Silence.
“Go ahead.” He is so damn smug.
“One hundred…”
“Yes.”
“Nothing’s coming.”
The neurology guy smirks and sniffs again and takes more notes.
“Don’t write that down.”
It’s Jim. He’s mad.
“Why not?” the neurology guy asks.
“Because she couldn’t have counted backward from one hundred by sevens before the stroke.”
The resident stares at Jim, then looks down at his clipboard and keeps writing.
You shout out: “Stop writing!”
He stops and stares at you.
“How the hell do you know,” you demand, “that I wasn’t stupid before my stroke?”
“You are suffering,” the resident says flatly, “from left-side neglect. It’s a common symptom of a right-hemisphere stroke. It may or may not go away.”
“Does that mean,” you ask, “that if I don’t like listening to you, I can have you stand on my left side, and you’ll go away?”
He stares at you both like you have just escaped from a lunatic asylum. But he stops writing. He puts the clipboard on the wall and leaves.
Your Encounter with the Tapioca Lady
A ladder and a choice.
Going to be there climbing it.
But going to have to choose, too.
“I RECOMMEND chemotherapy.”
Nighttime again. For some reason there’s a doctor standing by the bed. He seems to think you know him—short, bald, red-faced, and fat, in a white coat. A baby who has been poorly extended into the dimensions of the adult world.
So it’s you and the bed and the white sheet drawn across you and the window with the curtain drawn to block the night and the smell of antiseptic and Jim standing next to you, always Jim standing next to you, thank God, and then this impossible doctor-infant, pudgy and crimson-faced, clutching a ballpoint pen in broad fingers wrapped into a tight, shut fist.
“I’m definitely recommending chemotherapy. Actually it’s not a recommendation. It’s your only option. There are sterility issues, but that shouldn’t be your concern anymore.”
He seems to want one of you to say something. Jim stares him down.
“People sometimes get emotional about the sterility issue. Don’t do that. You’ve got a good family already, yes? Anyway, first an echocardiogram, to confirm there was no damage to the heart, and make sure that wasn’t what caused your stroke. Then chemotherapy.”
He is paid, apparently, to radiate a single red idea: I’ve made up my mind about this because I know more than you do.
Dr. Jerk.
“You have vasculitis. I’ve never seen it affect the brain before, but that’s definitely what it is. Normally affects the lower large organs. It’s incurable. Can go into remission, though, if you’re lucky. Not much luck so far, of course, in your case, but there you go. At any rate, the treatment is chemotherapy and high doses of prednisone. The physical problems, I’m afraid, are permanent. Bad news is, you’re going to have to get used to doing things very differently. Good news is, at least you’ll have better parking possibilities.”
Silence.
“What with the handicapped sticker, I mean.”
Jim glares at him.
“What,” you ask, “is an echocardiogram?”
THEY ARE WHEELING YOU on a gurney through the halls. The metal railing of the gurney sends little shock waves down your whole left side, like the sensation you get when you bite down on tinfoil with a filling.
“Why couldn’t they pad the railings?”
The nurse is a huge linebacker type with a crew cut. He laughs—he thinks you’re kidding—and asks if you’re okay as he wheels you.
“What, exactly,” you ask him, “is a drug-induced echocardiogram?”
He tells you.
JIM THERE, HOLDING YOUR HAND. You’re together, in this tiny over-lit room. The tinier the room, the brighter they make it. You hold Jim’s hand like you don’t want to let go of it.
“Relax,” Jim says. “It’s not going to hurt.”
You can’t believe he said that.
“Jim, do you know what they’re about to do to me?”
He puts his other hand on your hand and shakes his head no.
You tell him. It is basically an indu
ced heart attack. They want to make your heart go crazy to see if they can make whatever happened to you happen again. They shoot you full of something and make your heart race like you just ran an Olympic track race. They’re trying to confirm this vasculitis thing by coming within an inch of giving you a coronary and then stopping and bringing you back and monitoring what happened.
The linebacker crew cut nurse guy comes in and tells Jim he has to leave. He is arguing that he wants to stay but the bright room wobbles and twists and Jim is gone and there are now four nurses rammed into this closet of a room and you are being lifted onto a slab and the nurse says, “Don’t let Dr. Jerk touch any of the equipment, he always screws it up.”
You don’t want to be here.
You don’t want to have vasculitis. You don’t want to have chemotherapy.
You want to have another baby.
You say, out loud, “I want to have another baby.”
The nurses stop what they’re doing and look at you, then go back to setting up equipment and, evidently, dusting the tiny room for fingerprints.
The tiny room gets brighter and spins and Dr. Jerk is standing over you and energetically messing with the equipment just like the nurses said he shouldn’t. The nurses are trying to distract him by asking him about the monitors, but it’s not working. He’s really hyper; he’s twisting every knob and pushing every button in sight.
You are a passenger on a tiny airplane and the Nutty Professor is in the cockpit.
You want to tell him that he isn’t supposed to touch the equipment. You decide to say something, but the room bends again and your heart is racing inside your chest at a pace that could outdo any rock-and-roll drummer. Why on earth do you have to be awake for this?
“You should at least mist the patients,” you say out loud. “Then they’d feel like they were having a good workout at the gym.”
Nobody laughs.
Your heart continues its high-speed shudder. Dr. Jerk twists a dial and stares at the monitor.
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry Page 2