Jim always looks at you and says, “You’re beautiful!” He means it. But what does he see—or not see?
CHRISTMAS EVE IS MISERABLE. You can’t get out of your headquarters, the meal is burnt, and Rory is cranky and resists eating any of it. You overreact to his stubbornness and start to holler at him for his behavior. But what about your behavior? Who’s the adult here? You have reduced yourself to the level of a three-year-old. You’re in a headlock with him and you want to win. Is this the nurturing mother you once were?
The tension surrounds everything. The holiday puts your new and very different world under a magnifying glass, and what shows up isn’t pretty. You hate yourself for being so impatient with his behavior. You know your anger is unreasonable and your reaction is irrational. Why can’t you rein it in?
Because (the answer comes back silently) you loathe your condition and you’re angry with yourself for losing everything good in your life.
The Ghost of Christmas Past is gone. Now you’re dealing, uneasily, with the Ghost of Christmas Present. Not so sure what that third ghost has in store now.
Riptide
Narrow River, walking there, all broken glass and all snake-ridden, squirmy snakes, alive with them, writhing like a sea but it’s all snakes. And Rory screaming. And you’re supposed to walk through it and you don’t know how.
JUST A DREAM.
You used to go to Narrow River before your stroke. Before Rory was born.
Narrow River is at the end of a beach in Rhode Island. It’s a saltwater river that meets the ocean. It’s about a mile walk down the beach and when you get there, you can jump into the water, and it will be like a wild ride that takes you with its powerful current and pours you into the mouth of the ocean. Then you swim back to the shore farther down. It’s a fast-moving current and it can be really scary if you don’t give in to it. If you relax and literally go with the flow, it’s fun but if you get tense and fearful, the next thing you know, you’re drinking saltwater because the water has its own will and you can’t fight the will of the current, even a strong swimmer like you. And there’s a moment of freedom, of not having to deal with any of your body parts in the water because you’re floating and it’s a really nice sensation. You enjoy Narrow River.
So before your stroke, when Rory was about two, you walked down the beach with Marie and Jim. Little Rory was on Jim’s shoulder, and during the stroll Rory fell asleep. He was limp with fatigue and looked like a Cabbage Patch doll with his little baseball cap and sunglasses. When you got down to Narrow River, you just had an urge to jump right in, and you were out in the middle of the river when Rory woke up. When he saw you he started screaming, really petrified with panic. Marie was out there with you too, but you weren’t even close to each other. You have no control at Narrow River—it’s exhilarating.
And you remember being on that current and then, coming out, you get a little bit of a panic when you get to the point where you have to get to the shore. You think, Oh, am I going to get out of this riptide? But if you relax, which is what you do, it is just so much fun. So invigorating. Cool water caressing your body.
In the hospital, Marie sent you a huge bouquet of balloons—you always loved balloons; you even had balloons at your wedding—and the note she attached said, “Here’s to walking with you to Narrow River.”
Which is your goal now. That’s where you want to go. Narrow River.
Now all you can seem to think about, though, is Rory screaming—and broken glass and snakes to make your way through.
THE DREAM: Impossible to get to where you wanted to be—had to walk there, through the snakes and the glass.
Rory’s birthday party was five days prior to your hemorrhage. So now you have used the experience of that weekend to remember that it was the best Sunday you ever had. And who would have thought that? Who would have thought just having a cookout with your husband, and your son playing with his toys, a simple memory from a few months ago, would turn out to be the best Sunday you ever had?
It didn’t seem like it at the time.
Who would think about the last weekend you happened to spend with your family as the best weekend ever? It only becomes the best weekend if something happens to you. Time and memories crystalize when something happens to you. If you’re lucky.
Memories can become a heavy burden, a reminder of how different the present is. Even so, even coming out of a nightmare, you are glad you didn’t lose the memory of Narrow River.
All Shapes and Forms
AFTER YOU RECOVER enough to use a cane, Marie invites you down to her beach house again. You have your doubts. Narrow River seems premature. You need practice before you can try that again.
You ask Mom to take you to a friend’s house with a pool. You need to figure out if you can swim.
Your friend isn’t there, but you and your mom know she won’t mind if you go in the backyard. Your mother helps you make your way over to the pool area.
You take a deep breath, lean forward, and fall in the deep end. You tell your mom, “Don’t help me out unless I don’t come up for five minutes.” Good thing you learned the sidestroke when you were younger.
YOU’RE IN THE WATER. On your own.
It’s exciting, but a lot harder than you’d imagined, swimming with half of your body working, the other half dragging like an anchor. You’re working like crazy, trying to keep your head above water. Your impaired sensation gives the message to your brain that you’re swimming in Jell-O. You are quickly tired and sweating hard. It takes so much energy you can’t believe it.
After only a few minutes, you decide that you’re done. But there’s a problem. This is one of those old-fashioned swimming pools where the ladder is hooked onto the side of the pool. No walk-in steps.
You try to master the ladder, but it’s not the way it used to be, getting out of a pool. If you can’t feel your limbs on one side, and you’re weaker than a newborn, it’s going to take a miracle to get you out of the situation you put yourself in. You would need those limbs to work to get on each rung…
Mom is more panicked than you are. She jumps in the pool fully dressed and tries putting your foot on the rung. It falls off. She wants to go get help but is afraid to leave you.
You are soon completely wedged in. Your leg is trapped between the ladder and the wall of the pool. You’re like a block of cement.
It’s not a good situation.
As events grow more dire, a strange calm settles in. You assume that you haven’t been through all the crap you’ve been through so you can drown in a swimming pool.
God has plans for you.
A NEIGHBOR ARRIVES, with two children in tow. Her kids start doing cannonballs into the pool. They’re huge boys, and the waves feel like tsunamis. Not big enough to dislodge you, just big enough to make you more exhausted. Neither the children nor the mother acknowledge you—it’s as if you were invisible. Is this a dream where God is presenting you with another ladder challenge? If this was a dream, why is your leg bleeding and hurting so badly?
The neighbor is watching Mom’s futile efforts to dislodge you. She is, like her boys, large. After about fifteen minutes of you and Mom struggling, and getting progressively more frantic (she figures she’ll have to go get your brother), this huge woman comes over without saying a word and picks you up bodily, right out of the water. It’s like being shot out of a cannon.
It’s amazing. You had been thinking that it would take three people and most likely a crane to get you out of that pool. But she is not only huge, she is strong enough to lift your dead weight straight out of all the water that is pulling you down, too.
Afterward, you and Mom try to figure out how she did it. Mom thinks that it wasn’t a lady at all, but an angel.
Angels appear in all shapes and forms. People probably encounter several angels a day without realizing it.
YOU PUT OFF NARROW RIVER. You can’t walk on your own and you’re not ready for the ride. But you do visit Marie and spend
some time with her by the beach—you frolic in the water, and she holds you up, like a toddler. Every time a wave smacks your body, you tumble in the surf. If you go down, you can very easily drown, because it would be impossible for you to get up on your own. You envision the lifeguard coming to your rescue with his lifesaver and his surf-board…in a foot of water.
Thank God for Marie. People must think you’re lovers, the way she’s holding you.
There in the ocean water, holding on to Marie, you find yourself again thinking, as you often do these days, about angels.
Driving Miss Julia
YOU ARRANGE for a driving exam appointment on a beautiful spring Saturday morning. You are pacing (in your own distinctive, wobbly way) all morning, trying to shake the sensation that you may heave your breakfast.
You keep peering out the window, looking for the automobile you are supposed to be driving for your road test. Finally, a nondescript car pulls into your driveway. A hefty man walking with a slight limp approaches the front door. He introduces himself and then asks for your license.
You point to Jim. “Actually, I’m not the one taking the test—he is.”
The guy doesn’t laugh. This could be a long morning.
“Okay, it’s me.”
“Really. Never would have guessed.”
It’s hard to say what gave you away: The brace? Your big ugly cane? Your lifeless left side?
He cracks a smile. Thank God. You offer him a cup of coffee.
“No,” he says. “Let’s go for a drive first.”
“How about a beer for the road?”
Not a word. He’s like Mount Rushmore. That probably wasn’t the best joke to crack when your license is at stake. Damn. You wanted him to get to know you, like you, and pass you because you’re a good egg (albeit a cracked one).
It’s time to go. The thought of not passing this test, not being able to drive again, leaves you cold with panic.
Before leaving the house, you take one last, loving look at your license. You’re actually fondling the thing.
“I’d better take that.”
You reluctantly hand it over to Mr. Take-Your-License-Hostage.
“You’ll get this back when you’ve passed.”
Huh.
“What happens if I don’t pass? Do you sell it on the black market?”
“Be positive,” he advises.
You know the alternative to passing is failing, which means losing your license. What power this man has over you.
Be positive, Julia, be positive. Driving is like riding a bicycle—once you’ve learned, you don’t forget how. But I can’t ride a bicycle now, you think. That’s negative, Julia. Be positive.
He leads the way quietly. You limp your way to his car.
IT’S A BITTER PILL to swallow when you have a privilege and then have it taken away.
You don’t know what to expect. You can’t use the driving exam you had when you were sixteen as a model of what to expect today. You were a cocky kid then, not concerned about failing. When you were twenty, the Massachusetts legislature raised the drinking age from eighteen to twenty-one. A literal raising of the bar! You had the right to go to bars for two years, but then had it revoked at twenty. Same thing here. Where’s the grandfather clause when you need it?
You had practiced driving with Jim in the car, but not enough to feel completely comfortable at the wheel. It is hard to drive one-handed. You have to make sure everything is in exactly the correct position before moving—the side-and rearview mirrors, the temperature, seat, and radio settings—because you can’t make any adjustments once you’re in motion. If you have to scratch your nose, you have to stop and use your right hand—the hand you would otherwise use to hold the steering wheel.
You have no intention of buying a car that has to be altered by changing or adding special devices, for several reasons. First and most obviously, it will limit you to driving that specific car. You know there are going to be times when you need to drive Jim’s car. Second, and even more important, it will send the wrong message to you and to the world at large: that you’re disabled and need special equipment to function in the world.
But when you get into the instructor’s car, he has a knob on the wheel. It allows you to turn the wheel around one-handed without having to stop and pull it again. No other hand movement is necessary.
You’ve never used one before and you know it will take you a while to get the hang of it. Mr. Take-Your-License-Hostage requests that you use it, because he thinks you will find it much easier to steer with. You agree to his request, but you don’t really feel comfortable with it. You feel disconnected. But you pull out of the driveway anyway.
You have to use the weight of your whole body to flick the turn indicator. You wonder if you have ever concentrated this hard on anything before in your life. And your independence is at stake.
You feel completely at his mercy and subservient. You hate the idea of anyone having power over you. You feel like driving erratically, cruising onto the sidewalks, leaning out the window to yell “Road hog!” to the other drivers. That would be independence. Independence would be hitting the mailbox and running over the neighbor’s lawn, but that would also be…well, impulsive.
And anyway, you don’t want to piss this guy off.
“WELL, YOU MADE A MISTAKE when you didn’t stop at the end of your driveway before pulling out,” he says from the passenger seat after you pull back into your driveway.
“I’m in a cul-de-sac,” you protest. “There was no one on my left, I was good to go.”
“And when you were parallel-parking,” he continues, “you should have looked twice before pulling away from the curb.” This really feels like he’s yanking your chain. You were at the very end of a dead-end road.
He keeps making sarcastic remarks about your plans to buy a new car. He won’t stop talking about what an expensive car you purchased. Maybe he’s jealous because his car—the car you’re driving—is a seriously outdated Pacer.
You figure he is either busting your ass so you’ll be really, really careful when you do get out on the open road or getting ready to deliver some bad news.
Which is it?
“But you’re a very focused person, and I think you’ll be all right if you work your way back up to getting out on the highway. You passed. Here’s your license.”
Whew.
There are a few restrictions: You can’t drive a standard anymore. And he wants you to get one of those spinny knobs for the steering wheel.
“Actually, though, I think I’m going to be all right there. I’m only at the beginning of my recovery. I’m going to be able to use my left hand again.”
He looks at you and you know exactly what he’s thinking.
You look back at him so he can tell exactly what you’re thinking: I’m going to be cruising down 128 in a race car before you know it.
Homage to Your Hemorrhage
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? Reco
rdings 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.
Have Two Massive Mood Swings and Call Me in the Morning
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.
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry Page 18
