Or in the car with your mother. She takes you to all your doctor appointments and therapies, a task that has become a full-time job. You find yourself in the passenger seat gritting your teeth and agitated because she parked in a different parking spot than the one you had silently chosen. You’re aware that your anger isn’t rational, but you can’t help it: You’re pissed.
One Saturday morning, you can’t bring yourself to get out of bed. Jim hears you weeping, comes into the bedroom, and lies down next to you.
“What’s wrong?”
“I don’t feel like myself. I don’t want to get up and face another day in this damaged body. Everything is so hard and I’m just tired of trying to do basic shit, like getting dressed. I just don’t think I can live this way. I can’t do it.”
“Can’t do what? Get dressed? Come on, I’ll help you.”
“No, I don’t think I can do all the things I keep telling everyone I’m going to do. I think I’ve been saying I’m going to do all this stuff to convince myself. Jim, I can’t even put a sock on.”
This is not who you are. You feel even worse now, because you’ve unloaded all your fears and insecurities on Jim. All he wants is positive energy from you, and you can’t even give him that.
SOMEONE WHO IS on antiseizure medicine has to maintain a certain level of the drug for it to be effective. Blood tests have to be done regularly to ensure that the right level is maintained. If the level drops too far, the drug can actually bring on a seizure because the person’s body is used to a certain amount of the drug.
The regular blood draws are a pain—you have tiny veins and lots of scar tissue. You’re what the experts call “a tough stick.”
The first and only time you gave blood to the Red Cross, they pinched a nerve and you had to wear a sling for two weeks. When you and Jim went for your marriage license, the nurse simply couldn’t find your veins. You were stuck several times and then the nurse checked to see if the small amount drawn was acceptable. There wasn’t enough and it all had to be done again.
“Jim,” you say, “you’ve always been my rock, but now I’m starting to think I’m the rock, because you can’t get blood out of a stone, and nobody can get any blood out of me.”
Now Rory goes with you when you need to have a level check. He holds your hand while they find the vein and draw the blood. He is inquisitive and, as a toddler, part of his mother’s support system.
You hate the blood draws. But you don’t hate them as much as you hate the dependency. You don’t want a synthetic wellness. You want to be free of any controlling dependencies: antiseizure medication, antispasm drugs, everything except the prenatal vitamins Dr. Neuro prescribed, the only drug that represents something good for you in your future.
During your neurology appointment, you ask Dr. Neuro flat out: “How are we going to reduce my drug intake?”
No answer.
“I want my life back,” you continue, “and I am not going to let any drug have power over me.”
“Whoa,” Jim interjects, “before we discuss intake reduction, I’d like to point out an episode Julia had last weekend. She hit rock bottom with her mood. She was very depressed. I’ve known her over fifteen years and I’ve never seen her that low even when it’s justifiable. It seems like something has changed.”
You nod affirmatively.
“Depression is typical with stroke patients,” Dr. Neuro explains, “and particularly with right-hemisphere stroke. Science hasn’t yet figured out if it’s a result of the assault to the brain or the disability the patient is left to deal with—usually it’s both.”
“I’m not suffering from depression. I’ve just lost some of my motivation because everything I do is so damn hard and I’m exhausted attempting to do the simplest task. And I thought depression was hereditary—no one suffers from depression in my family,” you say defensively. The D word makes you bristle.
“I’m aware that you have no family history of depression but it’s possible you are suffering from depression now. Your mood has been excellent throughout your recovery, and with a sudden onset of despair, I’m led to believe you have a serious chemical imbalance due to all the damaged brain cells. I think we should try putting you on an antidepressant,” Dr. Neuro explains.
At the mention of another drug, and an antidepressant one, you are resistant. You’re aware of the stigma attached to the word “depression.” People perceive it as a weakness. You just want to feel like your old self emotionally. After considering how you feel, you know the real weakness would be not resolving a problem that’s fixable.
Resigned to the fact that you need to do something to correct this sudden foreign feeling of being overwhelmed, you agree to try it. “Okay, I know I need to fix this and I’ll take what you recommend, but I still want to reduce the other drugs. I don’t feel that I need to remain on the antiseizure medicine.
“How about a trade—you wean me off the seizure medication, and I start the antidepressants? One antidrug for another antidrug. How’s that for upping the ante!”
Dr. Neuro smiles. “That’s the Julia I know. Let’s keep her around. Deal?”
He starts shuffling through your charts and papers.
HE SAYS HE’LL wean you off the stuff, but he warns that it isn’t simply a matter of not taking the pills. In his office there is a poster showing the requirements in every state for patients on antiseizure medicine: When there are changes to your dosage, you have to follow your state’s laws, particularly regarding driving.
He goes through the whole discussion. You listen politely. You have been on this medicine for more than a year. You have to gradually reduce it over a period of six months, which is what Massachusetts requires.
You won’t be able to drive for six months.
“Can I just move to a state that doesn’t have a waiting period?” you ask.
He doesn’t laugh. He says, “You really must follow these rules. Just recently one of my patients ignored the rules and started driving anyway. He had a serious accident, and he’s in the middle of a messy, expensive lawsuit. Six months. No joke.”
Now you’re not laughing.
“Fine. Six months.”
He says okay and starts to leave.
“Doctor, I want you to know something. I am going to start removing things that are controlling my life. And this drug is one of those things. And P.S., I’m going to have a baby.”
He says, “I just want you to know something. If there’s a problem, we have to put you back on the drug.”
A little voice inside you says, “Don’t worry. You’re not going to have a seizure.”
You trust that voice.
He leaves. It’s January. You want to be driving by the end of June.
Bright Lights, Big Electrodes
DR. NEURO, squeamish that you could be sued, requests that you do a test so he can monitor your brain wave activity before you take any steps to wean yourself off the antiseizure medicine. This test will bring on a seizure if you’re prone to them.
Which you’re not.
But Dr. Neuro is cautious on this point, and you trust him (literally) with your life. So you do it his way.
USUALLY WHEN YOU are preparing for an exam, you’re always told to get a good night’s rest. This test requires the opposite—sleep deprivation. You are told to get no more than three hours of sleep the night before the test. Back in your college years, it wouldn’t have been a big deal. Now, though, you feel like you’re eighty. You need your sleep.
You’re a creature of habit and you fall asleep at the same time every night. Usually, you doze off in your headquarters and are startled awake by something or other; then you drag yourself to bed.
Jim stops at the video store to pick up a movie for you to watch late into the wee hours. Lethal Weapon 4. Lots of action. Hard to sleep through.
You pop the movie in after midnight and settle in.
You’re instructed not to have anything to eat or drink after midnight. At the st
roke (there’s that word again) of midnight, you are, of course, suffering from starvation and dehydration.
You stare at the television. Things explode.
IT IS PAST 3:30 when you finally stagger to bed. You are agitated from the movie, overtired, and anxious about the test tomorrow.
You don’t sleep.
The next morning your mother drives you to the hospital. The nurse remembers you from intensive care. She’s been transferred to the very department where your sleep habits will be studied. She says she never forgot you because you helped her learn that Things Happen, even to young people.
The electrodes are attached to different areas on your head. They scrape your scalp vigorously with sandpaper. This is to remove any substance that could interfere with a good electrode connection.
“Hey,” you complain, “you’re breaking my hair follicles—and I don’t have that many to spare!”
The abuse continues. You catch a look at yourself. You look like Medusa.
They lead you to a closet of a room. There is a bed against the wall and next to it is a desk with a computer where a technician sits. He monitors your brain waves while torturing you with strobe lights.
“Where’s my blankie? And do you mind if I suck my thumb?”
“Keep your eyes open, please.” Flash. Flash. Flash. Directly into your eyes. Not exactly the disco scene you remember. More like how you imagine they must brainwash people who are in prisoner-of-war camps.
After the light show, you’re ordered to go to sleep. You just experienced a laser show a few inches from your face, and now you’re lying down in a closet with a stranger watching you sleep. How relaxed can you get? Just press the sleep button on one of those electrodes.
“God, this is weird. What brainiac developed this test? Those poor mice!”
You relax and try to be diligent. You want to do everything right. You want to prove you’re seizureless when they take you off this stuff. You try to put your mind somewhere peaceful. You think of Narrow River in Narragansett, Rhode Island. You also try deep-breathing exercises, which you never mastered even during labor.
Your eyes are closed. The technician flashes the lights intermittently to monitor your brain waves.
Somehow you enter a light state of sleep.
JUST AS YOU HAD SUSPECTED, you don’t have any activity or evidence of a past seizure. It’s almost like the stroke was caused by an outside source.
Dr. Neuro is pleased with the test results. But he warns you that the fact that the results came back negative doesn’t guarantee that seizure can’t happen. You have still suffered a severe assault to your brain, a major bleed, surgery, and last but not least, a hole in your brain where a very large amount of blood was evacuated.
You smile and tell the neurologist, “Let’s face it, I need another seizure like I need a hole in the head.”
Silence.
“See, that’s a joke. I already have a hole in the head.”
“Ah,” he says. “I see. Would you mind telling me ahead of time when the punch lines are coming? Might be easier for both of us.”
“Sure. No problem.”
He walks over and hugs you.
You hug back. Dr. Neuro has become part of the family, so it doesn’t feel strange when you tell him that you love him.
What Goes Up…
YOU ARE DETERMINED to practice walking in your own house.
Which means you fall.
One day Jim is vacuuming upstairs and you crash down the stairs, landing in the entryway among the scattered rugs; now your limbs are scattered as well. You can’t get up. When he stops vacuuming and looks down the stairs, he sees your feet. He freaks, as you knew he would.
This is how stroke affects the radius of the injured one—not just the afflicted person, but the family, the extended family, and the friends. In a way, everybody around you falls when you fall.
THE GARAGE IS a big source of falls. Eventually, you manage to fall both up and down the stairs that lead to the garage. It must be the way the steps are constructed, with a half step from the laundry to the garage-step landing.
One day, you step down carefully to put some paper in the recycle bin in the garage. Your ankle turns, things spread apart, and you realize that you are falling, very slowly, à la Alice in Wonderland. Alice fell continuously through the rabbit hole; you fall continuously, at every conceivable juncture of your own home.
It’s surreal. Your legs are running away from home. You can do nothing to stop them.
When you “land,” you are spread-eagled, one leg in the garage and the other leg in the laundry room. It’s a complete split, with the doorjamb pressed up against your crotch. Nadia Comaneci couldn’t get out of this position. But you don’t call Jim.
It takes you almost a half hour to unwedge yourself. You feel like a parked car, with two cars sandwiching each bumper. As though you were a car getting out of such a spot, you do a fifty-three-point turn, inch by inch. By the time you free yourself from the doorjamb, you are sweating—but relieved that you don’t have to put Jim through the trauma of finding you grimacing in the cheerleader position.
THERE ARE MANY falls in the bathroom. Once, feeling spunky, you try standing up in the shower on your own. Without using the shower chair, without anyone else in the room for support. You’re feeling lucky—you want to feel normal again. People who have had strokes do give themselves showers. They do.
At first, it works. Your hair feels good—there’s shampoo in it—and your body feels slippery. The water is hot. You lose track of time. Then you notice the tub rim hurtling toward you.
Your guardian angels take care of you, though, because you miss banging your head on the corner of a metal table by a few inches, hitting only the side of the tub with your neck. You’re sprawled over the side. Everything has stopped but the water.
You feel your body when the shock wears off, and you definitely haven’t broken any bones. But you have a hellacious time getting up. Water and bubbles everywhere.
You don’t call Jim.
He would freak, and you’re not too crazy about letting him see you as a human mop, washing the floor with the front half of your body, naked, with suds all over you. It might take him a while to get past that picture.
Half an hour later, using the shower chair as your anchor, you are back on your feet. The bathroom looks like a lake. You check the mirror; you look like a beached whale. It’s a mess, but one thing is certain: You’re clean as a whistle.
YOU TRY THE SAME shower maneuver the next day.
You get the same result.
Actually, you don’t get exactly the same result. This time you shoot out of the tub as if someone had thrown you across the room and land all the way on the floor. You pick up quite a bit of momentum.
You are completely wedged up against the door, in the corner of the bathroom. It is so slippery that you have no chance whatsoever of getting up.
It’s no use.
You have to call for help.
As you lie there, you recall a Valentine’s Day card Jim made for you; it read, “Julia, A to Z.” V was voluptuous; P was pilose, a soft covering of hair, referring to a Latin man at work who used to stroke your arm and say, “I love your hair.” You had to get a dictionary and look up some of the silly love words he used: Z was for zaftig, meaning Rubenesque.
Maybe those letters would have different words attached to them now.
JIM HAS BEEN BATHING Rory in his bathroom; you don’t want to alarm either one of them, so you try to keep your tone light: “Honey, I need your help for a second.”
When he hears you, Jim rushes to the door. He’s terrified, and you know it.
He can’t open the door—it’s unlocked, but your voluptuous zaftig body is blocking it like a dead bolt.
“I’m fine, I’m fine I’m fine I’m fine.”
You can tell he is panicking; you keep trying to explain that you are okay, you just can’t get up. He starts pushing the door with all his stren
gth. You slide enough for him to squeeze through.
Your legs are up the wall. Bubbles are everywhere. You look like you’re posing for Playboy. Sexy sexy.
You laugh.
Jim’s not laughing though. To him, you are still a disaster in the corner, possibly injured. He stares at you. His face is white with panic.
“Okay,” he gasps, “what do I do?”
“Hey, there,” you say, with a provocative wink. “I’ve been waiting for you all of my life. Don’t you want to jump my bones?”
Not Exactly the Therapy You Had in Mind
YOU ARE SITTING at your desk. The computer screen is glowing. The cursor is blinking. Nothing is happening.
You had been thinking that you would be able to get employment somewhere down the road, but you realize, after an hour at the desk, that you simply no longer have the mental tools to put a portfolio or resumé together. You can no longer organize. You can no longer multitask. You can do one thing at a time, and you can only do that if you are paying very, very close attention. The policies and procedures you wrote before your stroke were, you realize, really composed by someone else. Someone you used to be.
This, the doctors tell you, is a result of the stroke. It’s what happens when you have a brain deficit. Your ability to put things in sequence, and then handle them as they need to be dealt with—that sense of organization—has been lost with your stroke. That part of your brain has basically been blown to pieces. This is a big part of the reason you’re regularly overwhelmed by fatigue from basic personal tasks like getting dressed.
Your days of being on the phone with a customer, working at your computer, and listening to one of the support reps at the door, all at the same time, are over.
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry Page 19
