Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (20 page)

ORIGINALLY THE PARTY
marking your first full year of recovery is supposed to be a surprise, but Mom lets it slip. You tell her you’re relieved to know about it ahead of time—you don’t feel like a surprise party because you feel like you really have to process what you have been through in the last year. You don’t feel like being shocked about anything else relating to your illness. You want to have some control over this process. If it were a surprise party, you’d probably burst into tears, and bawling will not be the best response for your family. So you look at it as a good chance to work through these enormous changes and not dwell on any of the negative stuff that you’ve been through.

The date is set: On July 17, 1998, your brother John plans to throw a party to celebrate your first year of recovery. You decide to call it your hemorrhage party, and invite your whole family and all your friends to come and pay “homage to my hemorrhage.”

You joke with your sister-in-law about the proper way to decorate for a hemorrhage party. Should there be a lot of red balloons? Photos of your CAT scans on the wall? Recordings of songs by famous stroke victims?

It is a true birthday. After all, you were given another chance. For nine months, you didn’t know if you’d live out the year. It feels like a rebirth. Preparing for it and celebrating it means more to you than your actual birthday, because the stroke was such a life-altering event. You promise to celebrate your hemorrhage date every year, to celebrate in some way so that it is never forgotten. You don’t take anything for granted. Every year, every month, every week, every second that passes is a victory.

THE DAY STARTS OUT
with you doing PT, OT, and pool therapy; then your friends Nancy and Marie pick you up and head to Marble-head to have lunch at Oceanside. Then you head to your brother’s house, where everyone converges for a celebration of survival, of life. You get eaten alive by mosquitoes around the pool. “At least,” you remark, “I’m bleeding out a little less dramatically this time.” Hey, you laugh at just about anything.

Jim says it is typical of you to want to celebrate the anniversary of your hemorrhage. He jokes that you can find something to celebrate in almost anything: “This is the first Monday of the month, so let’s have a party.” A month since MI (for moving in). Then there’s BS for before stroke. And PS for poststroke.

The truth is, you also like excuses to get presents.

You get clothing, gift certificates to restaurants, all kinds of stuff. Your oldest brother and his kids give you a model of an exposed brain as a bike helmet. You wear it for the rest of the day.

PREDNISONE,
a steroid you’re taking, produces a Jekyll-and-Hyde effect. One minute, you’re loving and understanding with Jim, and the next you’re calling him names for reasons you don’t really understand. Tonight you lost it because you didn’t like the amount of food he put on your plate. You were having Chinese food and he gave you more rice than you wanted and you started screaming.

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.

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 stroke (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.