ithout warning, a rare disease was robbing me of my vision. In a frantic race against the darkness, I studied the faces of my daughter and husband, committing them to memory. For I knew I might never see them again.
March 8, 1991
I rub my eyes when I wake up I and find a sticky wetness on my cheeks. I’d been dreaming about my brother, Robin, and I must have been crying in my sleep.
I go into the bathroom, and bring my face close to the mirror. Without my contact lenses in, my reflection is blurry. I grope for my glasses beside the bed, and go look again.
I still can’t see anything wrong except that my right eye is wet, the lashes clumped into points. I hold a washcloth against the eye. If it’s some kind of infection, at least it hasn’t spread to the other eye.
The scream startles me. It is Teresa, our 4-year-old daughter’s nanny. She is holding Kelsey’s medicine bottle in her hand. She must have come into the bathroom to ask me a question. Kelsey had been in the hospital with a respiratory infection and last highs, after we’d brought her home, was the first time Kenny and I had had a full night’s sleep in three days.
“Sangre!” Teresa screams again.
I have no idea what she’s saying, but her screams are frightening me.
She reaches out, pulling the wash-cloth away gently. “Blood!” she shouts.
Now blood is a word I understand.
“What blood? Where?” I ask
She points to my eye and the wash-cloth. I look, but I don’t see anything. I go back into the bedroom. Teresa follows me. I start to call out for my husband and then remember it’s Sunday morning, Kenny’s birthday, and a group of his friends have taken him out early to play tennis.
I hear my daughter calling to me from her room. Our loud voices must have woken her. “Teresa,” I say, trying to sound calm. “Please take care of Kelsey.
I don’t want her to see me.” I grab the phone to call friends for help. I give up after I reach the second answering machine and decide to drive myself over to the clinic. I take a small pillow off the bed and hold it against my right eye. The cushion makes it feel better, like a big, soft bandage. I sit there for a few minutes, taking deep breaths.
I feel our dog, Jake, licking me and sniffing around the pillow. Then something occurs to me: Jake sleeps on the bed with us. Maybe he got his paw in my eye. He’s scratched my cheek before. He must’ve cut the outside of my eyelid, and I can’t see it in the mirror because my eye is open when I’m looking at it.
This theory calms me. I grab the car keys, shout to Teresa that I am going to the doctor’s, and head out the door.
The clinic is only four blocks away. I stare straight ahead, still holding the pillow against my injured eye. At the traffic light, I notice my left hand gripping the wheel so tightly that my knuckles are white. I take a deep breath. Just a scratch, I tell myself. I might need an antibiotic ointment. Maybe some sutures. I flinch, thinking about getting a shot of Novocain in my eyelid.
I drive to the end of the clinic parking lot, which is vacant. I don’t trust myself to park between other cars.
At the reception desk, I am asked if it is an emergency. I take the pillow off my face. The receptionist gasps. “Come right in,” she says.
She ushers me into an examination room and tells me that the doctor will be in immediately.
“How on earth did you drive here with one eye covered up like that?” the doctor asks as soon as he enters the room.
“Very badly,” I answer. He laughs. He comes over and aims a small flashlight into my right eye. “All right,” he says cheerfully. “I don’t see any sign of serious injury. My guess is that the blood must have come from a small capillary vessel that burst during the night.”
“You mean there’s nothing to worry about?”
“Well, nothing serious that I can see.”
“I think I’m having trouble with colors,” I say.
“Really? What color is my shirt?”
“A medium brown.”
“Really? It’s a very bright red,” he says slowly. “You have lost the color red.”
He says this like the color red is something I should have taken better care of. It has never occurred to me that it is possible to lose a color. “What does that mean?”
“Let’s test your distance vision, and then we’ll talk about the possibilities,” he says in a clipped voice, without a trace of the laugh I heard before.
He hand me an oversize plastic spoon. “Cover your left eye, and read the chart,” he says.
I put on my glasses and follow his instructions. I see nothing in front of me but a fuzzy gray cloud. I drop the plastic spoon and it clatters to the floor. “Oh, God!”
I can’t answer him. I don’t know what’s wrong. I cover my left eye again, this time with my hand. I look straight at the doctor. He disappears into a gray fog. I pull my hand away as if it has been burned. He comes back into view. No, it can’t be.
“I can’t see anything with my right eye,” I say.
He stares for a few seconds. “You’re sure?”
“Yes,” I say, my voice high and squeaky with panic. I wait for his next move.
All my life I have trusted doctors. My grandfather was one, and my uncle, as well as many of my friends. I spent two years practicing health-care law in a large hospital where I defended the staff doctors in malpractice suits, negotiated their contracts, and worked with them to develop hospital policies and procedures. I always respected their knowledge and experience. Underlying this respect was the expectation that when. I came to them with my medical problems, they would put out my fires too.
“What are you going to do to fix my eye?” I now ask this doctor.
He steps back as if I have slapped him. Then he says something that I have heard doctors say only when their deposition is being taken. “I’m sorry, but this problem is beyond my expertise.”
“What?” I am stunned by his sudden loss of confidence.
“Do you have a regular internist?”
“Yes…yes,” I stammer. “Bill Lang.”
His face brightens. “I know Bill. We interned together. I’ll call him. You’re in good hands.”
He is grinning at me, clearly relieved. The intercom buzzes. It’s the receptionist.
“I’m going to have to see a few other patients,” the doctor says. “I want you to call somebody to come get you. Use this phone. I’ll be back, and we’ll talk some more.”
He is dumping me, but, at least, he’s trying to be gentle about it. “Call your husband. If he’s not home, call a friend,” he says over his shoulder as he walks out the door.
I decide that I will not give this kind of news to Kenny or anybody over the phone. I can’t stay here one more second. I have to go home. I pick up my purse and walk out the door. The hall is empty. I go into the waiting room, then out to the parking lot. I hear the receptionist calling me, but I keep moving. It’s my husband’s birthday. My daughter has been sick and may need me. I have to go home.
Kenny’s face is pale when I walk in the door.
“Thank God,” he says. He’s holding the telephone receiver against his ear, but his eyes are fixed on me. “Bill, she’s right here. I’ll put her on.”
“What’s happened.?” Kenny whispers as he hands me the phone. “Teresa was crying and carrying on about blood all over your face. Then some clinic doctor calls. He says you ran out on him, and he called Bill, and now Bill’s talking about you going to the hospital. For God’s sake, what’s going on?”
I take the phone and cover the mouthpiece with my hand. “I don’t know exactly,” I squeak.
Our voices always change when there is an emergency; mine rises, and Kenny’s lowers to a whisper.
“Hi, Bill. Sorry to ruin your weekend like this,” I say into the phone.
“Jackie, I need you to tell me what’s happened. Every detail. Why didn’t you call me right away?”
I take a deep breath. Bill is not an alarmist; he’s easy-going and slow to leap to conclusions. But now he’s not sounding like himself either. He’s talking double time, his voice picking up speed with every word. “Well, it didn’t seem worth paging you on Sunday,” I say. “I didn’t think it was that big a deal.”
“Have you had trouble with your vision before this morning?”
“I don’t think so.”
“Have you had trouble with your balance lately?”
“Well…” I roll this over in my mind. I had bumped into a wall yesterday morning at the hospital, but I blamed that on fatigue. I tell Bill this, and I can hear him taking notes.
“Okay, here’s the plan,” he says after a long pause. “You’ll have an MRI of your brain done over at the hospital. Then, you’ll have that eye examined by an ophthalmologist. Then I’ll give you a complete physical, and then…Well, we’ll take it from there.”
“Bill, I won’t be able to get on the MRI schedule for days. Why don’t we start with the eye doctor tomorrow?”
There is an uncomfortable pause.
“Jackie, we need to do these things right away. Today.” He is speaking slowly and deliberately now. “I’ve already gotten a radiologist and a tech to come in for the MRI. And I have a friend, an ophthalmologist, who is going to open his office. You can stop there on the way home from the hospital.”
“All of this today?” I can’t believe he has booked these appointments for me without checking.
“Jackie,” he says, “we can’t fool around. You’ve lost one eye already.”
I am silent as I try to process this stunning pronouncement.
“I’m sorry, Jackie. I don’t mean to upset you further,” Bill says. “It’s going to be all right. It’s just that we need to get moving. Do you have someone you can leave Kelsey with?”
“Yes, her nanny.”
“Good I’ll meet you in radiology. And Jackie–let Kenny do the driving.”
“Bill said that a tumor might be pressing against the optic nerve,” Kenny tells me in the car. “And the fact that it has happened so rapidly could be encouraging. It’s probably not…” he hesitates. “Anyway, the point is that they can remove a benign tumor and your vision would probably come back soon.”
I lift my head. “Are you talking about brain surgery?”
“Bill said that it’s not as bad as it sounds. It happens more often than we think.”
“Once is more often than I have ever thought about it happening to me,” I say.
We drive through the front gate of the hospital where I worked before Kelsey was born. Kenny and I stop at admissions. I recognize the clerk.
“Dr. Lang is waiting for you. He wants your husband to stay here and fill out the forms. You’re to go straight to radiology,” she says. Then she smiles, uncertain of herself. “Welcome back…! guess.”
An hour later, the brain scan is done. Bill tells me he’ll call later with the results. “Hurry,” he says. “I’ve given Kenny directions to the ophthalmologist’s, and he’s out front waiting for you.”
I go out to the car and slide into the front seat. I look at Kenny with my good eye. His lips are pressed tightly together, a signal I can read even with only one eye. “What’s wrong?”
“Well, I told Bill that I would say a prayer there wouldn’t be anything on the films, no sign of a tumor. And he told me I’d be praying for the wrong result. He’s hoping that that’s precisely what they’ll find.”
I think this over from a doctor’s perspective. What could be worse than a brain tumor? And then I understand, with the kind of understanding that goes straight to the bottom of my stomach. The worst thing for a physician to find is something he can’t do anything about.
My grandfather was chairman of the ophthalmology department at Johns Hopkins Hospital in Baltimore, where I grew up. All of his grandchildren called him Doc. We thought that was the first and most important part of his name. Since he never asked us to call him anything else, he must have thought so too. When he died, a research center was built in his name. Bob Hope, whose eyes my grandfather had “saved,” gave a speech at the dedication ceremony. I was 8 at the time. I adored my grandfather, but it wasn’t until then that I understood what he meant to so many people. Now I think that even he could not save my eye.
I tell Kenny this while we sit in the dark lobby of the ophthalmologist’s building, waiting for him to open his office. “There’s no use in having any doctor examine an eye that’s already gone,” I say.
Kenny reaches over and draws me close, “But, Jackie,” he whispers, “you still have another eye.”
For a long time we hold each other, and it feels like we are the only two people in the world.
“I’m ready for you now,” the ophthalmologist finally says, motioning us into his office.
I sit down in the examination chair, and he shines a light in my right eye.
“Well, I can see that the pupil is already dilated,” he says with a sigh. “Did another doctor put in drops?”
“Oh,” he says, sighing again. “Well–that certainly shows you.”
“Shows me what?”
“The spontaneous dilation of your pupil shows you are blind in that eye. He turns off the light.
Blind. This is the first time that word has been used in my presence. It is devastating to hear. As far as I can remember, my grandfather never spoke that word out loud. “Those eyes have gone where the woodbine twineth,” he used to say when he was discussing an unfortunate case. He was, in his time, the most skilled eye surgeon in the world, but it was the rare operation that could restore an eye once it was gone. He pioneered research into various therapies to prevent blindness. He believed in avoiding loss before it happened.
I have lost vision in one eye, but I still have the other, I tell myself.
As if reading my mind, Kenny says, “But her left eye is fine. That means it’s not having any problems, right?”
The doctor walks over to his desk. “Personally, I have never seen a case of this symptom presenting bilaterally,” he says in the same flat tone he used for the word blind. From him, good and bad news is delivered with equal detachment.
“So that means it won’t spread to the other eye?” I ask.
“No. It’s not that kind of problem,” he says.
“Then what kind of problem is it?” Kenny asks.
The doctor takes off his glasses and rubs his eyes. “I’m sorry,” he says finally, “but I believe this is a symptom of a neurological disease that has been going on for some time. Blindness in one eye is just the first presentation.”
“What?” I ask. “What disease would cause this to happen?” And as soon as I ask the question, I know I’ve made a mistake. It is what they tell you in law school never to do. Never ask a question to which you don’t already know the answer.
“Multiple sclerosis,” the doctor says. “Optic neuritis–that is, swelling of the optic nerve–is almost always associated with it.”
This new piece of information knocks me speechless. I don’t have any firsthand knowledge about multiple sclerosis (MS), but all my visual images are associated with wheelchairs and lack of bodily control. I remember Bill Lang’s earlier question about loss of balance and realize this is where he was leading. Blindness is just a pit stop on the road to multiple sclerosis.
The telephone is ringing. We blink at each other for several moments before the doctor picks it up.
“It’s for you,” he says, after a moment. “It’s Bill Lang.”
“Jackie, I’ve just talked to the radiologist,” Bill tells me. “The MRI shows no sign of a mass or tumor anywhere in your brain. However, it does show that your right optic nerve is swollen and dysfunctional–a neurological problem.”
“Multiple sclerosis, right?”
“Uh-oh,” he says. “I’m sorry you’ve been told that. MS is merely one possibility we have to consider, but I want to examine you first, before we go in that direction.”
“You mean I may not have MS?”
“No. We can’t make a definite diagnosis yet,” Bill says. “Listen, I want to do my own detailed workup tomorrow morning, and then, if necessary, we’ll have a neurologist look at you. He might be able to determine if a second symptom is on its way.”
“On its way?”
“Well, yes. A specialist in neurological disorders might be able to detect a change that’s so subtle even the patient doesn’t notice it yet.”
He’s talking about me. I am the patient not noticing. And what could be missing that I didn’t realize was missing–yet?
“Oh, Bill,” I say, my voice cracking, giving me away. I am so tired and scared. “It’s late. Let’s all go home.” All this talk isn’t leading anywhere, and I want this long day to end.
When we get home, I fall into bed, fully clothed. I just want to go to sleep, without moving, without thinking.
“Eyestrain,” Kenny is saying. “That’s all it is. Your eyes just need a long rest.”
The word evokes a memory. “Eyestrain,” I repeat, trying to bring the memory forward.
Kenny goes into the kitchen and when he returns, he lays a cold cloth against my eyes. “Here,” he says. “Ice. I thought maybe it would reduce the swelling of your eyes.”
Eyestrain. Now I remember. Ice train.
I see my brother, Robin, as a young child, leaning over his train set. He is laughing as he puts an ice cube into the back of the coal car. “Ice train,” I say out loud, laughing at the memory.
I tell Kenny the story. I was in second grade and suffering from such a severe headache that I’d begged to go home early from school. It was an unusual complaint for a little girl, and so our doctor came to the house that night. He diagnosed my problem as eyestrain due to nearsightedness. A short time later, I got my first pair of glasses.
“But what about ice train?” Kenny asks, still not getting it.
“Well, Robin got the words confused. He thought we were talking about ice train instead of eyestrain.”
There is a moment of silence, which always trails the mention of my brother’s name into any conversation.
“I think it would be better not to bring up sad memories of Robin now,” Kenny says softly.
“But this memory is happy,” I say, eager to tell him.
“So we can talk about it tomorrow,” Kenny says, yawning. “You need to get some sleep.” He reaches to turn off the lamp.
“Please don’t,” I say, suddenly afraid of the dark.
Kenny sighs. He sleeps best when it is pitch-black. But tonight my preference rules, and we go to sleep with the lights on.
“It’s time to see the specialists,” Bill Lang tells me after he’s completed his examination the next day. “There is nothing unusual in your blood results, and no sign of a virus that might have attacked your optic nerve.”
“What kind of specialists?” I have hated anything having to do with the word special ever since I heard it used to describe my brother. Robin has special needs. He has to go to a special school with special teachers.
My mother always knew that something was wrong with her firstborn and only son. He was a beautiful baby and toddler, with soft blond curls, but his blue eyes never seemed to look directly at anyone. His development was slow. At 2 1/2, he could not speak, walk, or hold a spoon.
I have told Bill Lang all this before as part of my family medical history, but I feel compelled to repeat it now. I know that autism is classified as a neurological disorder and that my loss of vision is presumed to be a neurological defect.
“And that’s where the similarities end,” Bill says. “You have developed this condition at thirty-six with no history of eye trouble other than nearsightedness. Your brother was born with autism even though the diagnosis was late.
“Actually, it was early,” I say. “Robin was one of the first children to he diagnosed as autistic.” Dr. Leo Kanner, the chairman of child psychiatry at Johns Hopkins had taken him on as a favor to my grandfather. It was called Kanner’s syndrome in the early 1950’s. It was renamed infantile autism a few years later.
The diagnosis was so new it wasn’t in the dictionary. When I tried to look it up, I thought I must have heard incorrectly. So I found the word that sounded most like autistic and that fit my brother. Robin was autistic. Of course, I had always known that. He loved making and building things. He was obsessed with bright colors. He would stay up late, studying pictures with a flashlight. He could never get enough of how the world looked.
“But aren’t there other things that are the same about these diseases?” I ask.
“There are no similarities between MS and autism, Jackie. Just two unlucky breaks.”
“But I was thinking–” “I don’t want to cut you off, but I’ve made an appointment for you with a neurologist this afternoon. He may have to do some more invasive tests, but I think he can answer your questions better than I can.”
I look up at him. I am being handed over again, but I know he’s trying to do what is best for me, and there’s nothing else he can do. I go out to the waiting room and hand Kenny the address of the next doctor.
In the car, I can’t stop thinking about the two neurological disorders. Both are unpredictable and incurable. But that’s not what scares me most. Researchers have never discovered why one person in a family develops autism or MS and the others do not, and this is hard for me to accept. If the specialists don’t know how it starts, how can they predict my fate any better than my brother’s?
“I know you’re scared,” Kenny says, “but Bill told me that the spinal tap wouldn’t be so bad.”
Spinal tap! So that’s what he had meant by invasive tests.
“Think positive thoughts, Jackie,” Kenny coaches. “It really isn’t going to be as bad as you think.”
“Then why don’t you have the spinal tap since you don’t seem to be worried about it.” My voice is shaking with anger and fear. Now that I am half-blind, I feel like half a person, and I’m acting like one, a shrunken version of myself. I am screeching at the person I need most in the world.
Kenny has steered the car over to the curb. “Listen to me, Jackie. Please. I would take this test for you if I could. It would hurt less than watching the needle go into you.”
I nod. I believe him, but it’s not enough. “But you can’t.”
“No, I can’t. But this is what you must understand: I’m in this with you. Forever. I will live with you and whatever we find out, for better or for worse.”
I can’t say anything. My throat is tight with tears. Until he said those words, I didn’t understand that what I had feared most was being left alone, like Robin. I nod my head, tears spilling down my cheeks.
“I love you forever,” Kenny whispers, as he wipes the tears from my face.
Forever. When Robin learned to write, he spelled it “fourever.” Four was his favorite number.
And he will be four forever, I remember my mother saying. But she never wanted to give up on her son, even though all the specialists, including my grandfather, told her to give him up, to preserve the rest of the family.
“Jackie?” Kenny is squeezing my hand to get my attention. “We have to get out of the car. We’re late for the appointment.”
I look at the medical office building. Better late than too late–one of Robin’s favorite phrases.
I am hearing ghosts. How can I explain this? Maybe I’m going crazy. Maybe I’m not really blind, but I just think I am.
“Kenny, do you think it’s possible that all this is in my head?”
“No,” he says immediately. “Bill told me that it’s not the kind of thing that happens due to emotional stress.”
“So you don’t think I should see a psychiatrist?”
“No, I don’t,” he says. “But you have to see a neurologist. Now.”
“Okay, let’s go,” I say, getting out of the car.
The neurologist leads me through a series of tests to assess my strength, sensitivity to pressure, hand-eye coordination, reflexes, and balance. We are both concentrating. He is grading my performance, and I am trying to ace the test. The only sound in the room is the deep breath I release when he calls for the nurse to bring in Kenny.
“Unremarkable,” the doctor says, looking into my eyes for the first time and smiling.
Kenny walks in to find us both grinning.
“Your wife’s nervous system is unremarkable,” the doctor says.
I think about how neurology, like many fields in medicine, defines good news with a negative pronouncement. The goal is to be unremarkable. And I am. This is my A-plus grade. I let it sink in and enjoy its warmth.
“That means she doesn’t have to worry about MS?” Kenny asks.
The neurologist winces. “I’m sorry,” he says. “Multiple sclerosis is not a disease that can ever be ruled out.”
“What about the spinal tap?”
“I would do a spinal only if my initial examination gave me reason to proceed further. And it hasn’t.”
“I don’t understand,” Kenny is saying. “What do we do next?”
“Nothing more is called for at the moment.” The doctor turns to me. “However, if you have any other problems besides your eye, then you need to call me.”
I nod. I slide off the examination table and reach for my purse. I am seconds away from a clean getaway when Kenny puts his hand on my back.
“Wait a minute, please,” he says. “I still don’t understand. Are you saying we should simply wait for something else to happen?”
“All of us live with uncertainty,” the neurologist says. “Jackie has presented a severe symptom that is frequently associated with MS, but there could be another explanation. On rare occasions, there will be an isolated case, episodic blindness, without recurrence. This is called a `neurological incident with etiology unknown.'”
“What?” Kenny is now rubbing his forehead in frustration. “So it could be a freak thing–a once-in-a-lifetime event that’s just happened?”
“Yes, but I don’t want to raise your hopes. The far more likely scenario is that a series and variety of debilitating symptoms will follow over the next few years.”
A series and variety of debilitating symptoms. Silently, I beseech Kenny not to ask any more questions. Please.
“What is the likelihood that that will happen to Jackie? What are the percentages?”
The neurologist looks at me now, his face etched with lines of worry. I’ve seen this expression on doctors’ faces before, in depositions, when finally the one question they don’t want to answer has been asked and there is no turning back.
“Well,” he says quietly, “the range of probability for a diagnosis of MS when this optic neuritis presents is eighty to ninety percent.”
Kenny grabs my hand, squeezing hard. He never expected such numbers.
“I’m sorry,” the doctor says, trying to fill in the shocked silence. “For people like Jackie, the chances of MS are extremely high.”
I glance at Kenny. His head is down. His dark hair shines like patent leather under the fluorescent lights, with none of its usual copper highlights. Staring at it, I remember what terrible news can do to hair. It made mine turn gray when I was 25, within a few months of learning about Robin’s death. And after our mother died a little more than a year ago, my sister Sally’s beautiful blond curls began to thin and droop; my sister Polly’s hair fell out in sympathetic chunks.
“I’m sorry I can’t be more helpful, Jackie,” the doctor says. “You will call me if you have any other problems, won’t you?”
“Of course,” I answer, realizing I have no idea what I am supposed to be watching for. “What might this second symptom be?”
“In your case,” he says, “the second symptom would present itself as dramatically as the first. Total shutdown of another part of your central nervous system. Perhaps the spine. You might suddenly fall down because your legs won’t support you.”
My legs buckle instantly. I crumple against the examining table.
The doctor quickly moves toward me. “I’m sorry. I told you that because I didn’t want you to worry about little things, like your foot going to sleep. I see that I’ve upset you. Can I get you some water?”
Water? How about a tranquilizer? I fear there isn’t a narcotic strong enough to ease this horror. “I think it’s time for me to go home,” I say. “I’m so tired, I can’t stand straight.”
Kenny and I are silent in the car. I stare at the stop signs. I have lost the color red, but I can still read the words in black and white, and reading is an indispensable part of my professional life. Since I left my hospital position, I have made my living by writing. I am working on two books at the moment: a novel and a labor-law manual. There is no reason I can’t continue working on these, even if I do begin to have trouble with my legs. By the time we reach the house, I have softened the horrible pictures in my mind.
Hours later in bed, however, I acknowledge that the neurologist’s harsh prognosis has knocked me flat. I’m resisting sleep so I won’t have to wake up and face the devastating possibility he’s depicted. My eyelids are heavy, but I won’t let them close. I can rest with my eyes open, I tell myself. I can. And I won’t let anything disappear.
The next day, Kenny won’t give in to my fears, or admit that he has any himself. Like my father, he’s relentlessly optimistic at the most difficult times.
Later, we pick up my father, who’s come to L.A. from Baltimore to help us in this crisis, at the airport. I sit in the back seat and gaze at their profiles. They look nothing alike, but I think they are the two most handsome men I have ever known.
Dad is tall and lanky, with fair skin and smoky-blue eyes. Kenny is muscular and compact. He has olive skin and brown eyes, deep-set and intense. When my father and my husband turn toward each other and smile, I want to hold the picture in my heart forever.
The following morning, it’s Dad who chauffeurs me to my next medical appointment–with a retinal specialist in Beverly Hills. Our mission this time is to rule out the possibility that the retina is somehow involved with the swelling of my optic nerve.
As soon as we walk in the door, a nurse announces that I need to be injected with a dye that will light up the vessels in my eyes. She leads me down a hall, points to a chair, and in moments has an IV up and running into my arm. Suddenly, I feel warm all over.
“Getting the hots already?” she says casually.
“I’m on fire,” I say.
“Good.” She rushes me into another room. It looks like every other eye doctor’s office. I sit down and close my eyes. A moment later, when I open them, I am looking straight into the doctor’s face.
“Did I startle you?” he says. “We have to be quick.” He shines a flashlight into my right eye. I expect it to hurt, but it doesn’t. He turns to my left eye. It immediately fills with tears. I squirm in the chair.
“Just a few seconds more,” he says, twisting his head one way, then the other “Is someone here with you? Someone who can drive?” There is urgency in the way he asks the questions.
“My father’s with me,” I say, inexpressibly grateful for this fact.
“I’d like to speak to him,” he says, turning off the light and handing me a tissue. “You just relax. The hot flash should be over shortly.”
A few moments later, I hear my father’s voice and the doctor’s in the hall. I want to get up and open the door, but my skin is still burning. Then I see my father, floating toward me through a blur of tears. “What’s going on, Dad?”
“Well, the nurse said that the doctor wanted to talk to me about my wife! That sure threw me. She thought you were my second wife. Only in Los Angeles.”
“Dad, please. What did the doctor say?”
He sighs. “He’s referring you to another guy, downtown, at the University of Southern California.”
Dad is making a froglike sound in his throat. I recognize this signal. He’s agitated, and not telling me the whole truth–unspoken words are lodged in his throat.
“Dad? What’s going on?”
“We have to leave right away, Button,” he says. “This other doctor is double-booked. We have to get down there as soon as we can or we’ll miss him. It’s four freeways from here. Four! Can you believe that?”
He grabs my arm and pulls me out of the office, his grip strong and determined. We get in the car and head straight to the nearest freeway entrance, tires screeching. Earlier, he drove Kenny’s car carefully. Now, he’s driving like a maniac.
“Who is this doctor we’re seeing?” I ask.
“He’s a real specialist,” Dad says. “He only takes cases referred by other specialists. You’re lucky he can see you today.”
“I don’t feel so lucky.”
Dad doesn’t comment, and I know there is something he’s not telling me.
The first thing I notice in the doctor’s waiting room is that everyone has gray hair and is wearing very dark glasses, the kind blind people wear.
“Gorman? Is Gorman here?” a voice is booming.
“Yes,” my father and I answer together.
The nurse grabs me by the arm and pulls me through another door. “Now I’m going to put some drops in both eyes,” she says. “This is going to cause discomfort. Hold still and lean back, please.”
My right eye explodes with pain, as if she had poured acid into it. Reflexively, I push her arm away, but she’s quicker. She grabs me by the back of the neck, and forces a drop in the other eye.
“Stop it!” I scream.
“What’s wrong? What’s happening?”
It’s Dad’s voice, but when I turn toward him, I can’t see anything. “Dad, I can’t see you! And it hurts so much!”
“What have you done to her?”
“It’s just the medication. She’s fine. The doctor will be here shortly.”
I can’t see an inch in front of me. I clutch the arms of the chair. I hear a door opening. Someone is touching my forehead.
“Hello,” a voice says, a nice voice, with a British accent. Something about the calm tone, relaxes me. “I’m going to examine your eyes now,” the doctor says. “Please don’t move.”
“I won’t,” I say. The stinging has stopped as suddenly as it started, but I still see nothing. My eyes feel frozen and numb.
“All right. All done. Please sit back and relax.”
I hear the sound of wheels on linoleum and I know that he has rolled his chair back, but his hand stays on my wrist, connecting us.
“What is it, Doctor?” Dad asks.
“I’m sorry,” he says softly. “Both optic nerves are shutting down.”
“Daddy?” I call out to the gray-filled air.
“Jackie, I’m sorry,” my father says in an old man’s voice, worn down and tired. “They told me that at the other doctor’s office. I didn’t know how to tell you in the car.”
“But it’s not supposed to happen in both eyes!” I protest. “The first eye doctor said that.”
“Bilateral optic neuritis of this severity is rare,” the specialist says. “I’m sure the other physician has never seen it. I’ve seen only a handful of cases, and none of them lost so much vision so quickly.”
“How quickly?” I burst out. “Is…is all of it gone already?”
“No, I don’t think so,” he says soothingly.
I feel his fingers move to press against my pulse. This small adjustment touches me deeply. I do not know the name of his specialty, but I have figured out this much: This doctor has been with countless people in their darkest hour. I sensed it in his waiting room, and now I know. His specialty is disorders of the eye that lead to total blindness.
He is the kind of eye doctor my grandfather was, who appears at the moment the patient is falling off the edge of the sighted world. He puts himself between the patient and that terrifying fall. The only way I can keep from hysteria is to put a familiar, loving face on this stranger. I envision him as a younger version of my grandfather.
“Jackie,” he says. “I know this is hard. And it will get harder. But I believe that. in time, it will get better.”
There is silence after he says this, a respectful space for private prayers.
My father has taken my other hand. He clears his throat. “Doctor, how much vision will she lose in her other eye?”
He wants percentages, just like Kenny.
“At the moment, it’s difficult to say due to the clouding effect of the medication,” the specialist answers. “That blurriness should clear up within an hour. However, the left optic nerve is swelling rapidly, so any recovery of vision will be temporary.”
“How temporary? How much time will I have?” But I already know the only answer. However much seeing time I have left, it will never be enough.
On the drive home, I keep my left eye fixed on my father. I want his face to be what I see when the drops wear off. But it is Kenny’s face I see first. He is opening the car door. I have to look straight at him–my sight is telescopic now–but I can see his face!
During dinner, I don’t eat, but stare at the food. Then I stare at the faces around the table. I can’t stop looking. Later, I memorize Kelsey’s profile watching her sleep, breathing in the sight of her like oxygen, never quite getting my fill.
Suddenly, I crave all the pictures of my life. I am frantic to find them. I gather all the framed photos from the desk and tabletops, all the albums and loose photos in drawers, even old school yearbooks from the shelves. I spread these out on the floor in a close circle around me.
As I crouch over these piles of pictures, I am comforted. Kenny and Dad have pleaded with me to go to sleep early. But how could I close my eyes as long as I can still see something with them?
Kenny joins me in the living room, kneeling down and pulling me into his arms. But I pull back so that I can hold his face and study it. I can’t let this picture escape before I capture it in memory. He closes his eyes, but does not turn away. He would never turn away from me.
I fell in love with him 18 years ago, my first year in college. Kenny is the luckiest thing that ever happened to me. Up until these last few days, I have always felt lucky. I knew I was born lucky simply because I wasn’t born like Robin. All my life, I have been riding the crest of good fortune, but now the tide has turned against me.
I let go of Kenny’s face to look down at the picture that has fallen in my lap–an old family photo of my three sisters and me and Robin, together on some special holiday. It’s a color snapshot, and I look carefully at my brother’s eyes.
Robin’s real name was Arthur, but we always called him by his nickname, because his eyes were the exact shade of robins’ eggs. But they are not blue in this photo anymore. They are gray, like the rest of the picture. I’ve lost all the colors now.
I hold the picture so close to my face that my nose skims its surface. I close my eyes. I don’t want to look anymore. I don’t want to watch my family vanish into a cloud.
“Kenny, I’m tired now. Please, help me to bed.”
Kenny pulls up the covers and sits next to me. He strokes my face. I can feel his body shaking beside me, but I can’t cry with him because then I would have to open my eyes to release the tears. And I need to keep my eyes shut tight so that I won’t see his disappearing face.
I wake up to the smell of bacon cooking. My father must be making breakfast, just as he did every Saturday morning of my childhood. I can hear the sound of footsteps coming down the hall. I sit up and fall sideways and down, right off the bed. I’m lying face down on the floor. My forehead burns from sliding hard across the carpet. I roll over on my back. Jake is licking my face. I open my eyes, but I can’t see the dog, only feel the softness of his fur against my skin. I look down at where my legs should be, touch my knees, hug them to my body. I am invisible to myself.
I can smell, hear, and touch, but I can’t see. I have woken up blind.
I crawl toward the bed and reach for the end of the bedspread, but my hand grabs air. I fall down again. “Help,” l cry out.
Kenny and Kelsey come running into the room, calling out to me.
“Mommy, why are you keeping your eyes shut so tight?” Kelsey asks.
“Oh, Kelsey,” I say, reaching for her. “I love you so much.”
“I love you, too, Mommy.”
I feel her breath against my face, her fingers pushing my eyelids open, the way she always does when she wants me to wake up. But I can’t open my eyes, even for her. I can’t bear losing the sight of her.
“Mommy, are you sick?”
“No,” Kenny says. “Mommy’s not really sick. She’s having trouble with her eyes, but the rest of her is fine.” He hesitates over the words. He has no idea how to tell her. Neither do I This is not in any of our parenting books.
“Will Mommy’s eyes get better again?” Kelsey asks.
I don’t know what we should tell her. The specialist believes that I will see again. Maybe not as well as before, but better than nothing. Better than now. Still, I’m afraid to believe it, and afraid not to.
Kenny clears his throat, and to my surprise, says, “I called the doctor this morning while Mommy was still asleep, and I asked him that same question.”
“What did he say?” Kelsey and I ask at the same time.
“He said Mommy’s eyes would start to get better in eight to ten weeks.”
I gasp. This is a miracle! He didn’t just get a number–he got a date! It’s now the middle of March. By the first of May, I might be able to see again. Two months–hardly any time at all.
“Tell me his exact words. Please.”
“He said if it is going to get better, it will start to get better by then.”
“If? If? So there’s a chance it won’t?”
“Jackie, please. Don’t go there.”
“But I am there, Kenny!” My voice is rising, and I don’t want Kelsey to witness my distress. I don’t want to pull her down with me. I don’t want to bring Kenny down either. They’ve got to stay safe–away from this dark cloud that is now a part of me.
“Kenny, please take Kelsey out of here.”
“Mommy doesn’t feel well, Sweetheart,” Kenny tells Kelsey. “I’m going to take you to your grandfather.”
“I love you, Mommy. I hope you feel better soon.” Kelsey’s hand is patting my back gently, and then it is gone.
I’m shaking all over now, chilled to the bone. I hear Kenny’s footsteps returning.
“Jackie, we are going to get through this. We are.” He gets under the covers and holds me, his chest to my back–instant warmth. “Oh, Jackie,” is all he says.
The next morning, Kenny is sitting on the bed, gently shaking my shoulder. I don’t want to open my eyes. I’ve heard the morning sounds: Kenny’s shower, the blow-dryer, a ringing phone, Kelsey’s good-bye as she left for preschool. I listened without opening my eyes. This is the closest I can get to denial.
“Jackie, I know you’re awake,” Kenny says.
I turn and look in the direction of his voice. I blink at the gray space where he must be. My head snaps back against the emptiness. I shut my eyes again. I need a mask that will weigh down my eyelids so they won’t open out of habit or hope.
“Listen,” Kenny says, “the phone has been ringing off the hook. Your sisters, your friends, everybody wants to know how they can help.”
“Tell them there isn’t anything they can do.”
He takes a deep breath. “Jackie, we need a plan. I’ve got to go back to work. Somebody has to be here with you and Kelsey.”
“Teresa can stay full-time and help with Kelsey.”
“I’m talking about help for you.”
“I don’t need help. I’m not leaving this room until I’m ready. And I’ve got everything I need here.”
“People want to come visit.”
“No.” This is the one thing I am sure about. “I don’t want anybody to see me when I can’t see them.”
“Even your sisters? They’re ready to fly out here.”
“Kenny, tell them not to come. Tell them I’ll telephone them.” An idea occurs to me. “Please buy a phone with big raised numbers.”
“All right. I’ll go to the store right now.” He is excited. “I’ll get you books on tape, too, and a tape recorder. one you can dictate into if there’s something you want to remember.”
He’s ahead of me. I can’t read or write, hut I can speak and hear.
“Jackie, we’ll figure out a way for you to do everything. But even so, it’s only temporary.”
“Do you really believe that, Kenny?” I have not dared to ask him before.
“Yes, absolutely, I do,” he says firmly. “I can’t explain why I’m so sure, hut I am.”
I know why. It’s because he loves me too much to allow himself any doubt. “Kenny? When you get hack from the store, would you take me to the sink and put out my toothpaste and stuff?”
“Of course. But you don’t have to wait. I can do that now, or I can call Teresa.”
“I’ll wait for you to help me,” I say in a small voice. The greatness of my needs hits me in the stomach. Everything is so hard.
As Kenny leaves, the dog jumps on the bed. I give in to tears, releasing huge, gasping sobs. I cry for my brother, my mother, for every person who has ever been sick and felt this alone.
The dog leans against me and licks my tears. Jake is a retriever-husky mix. Kenny and I have had him for 15 years. He is deaf and almost blind with old age. What a pair we make. I throw my arms around him and cry into his fur.
Over the next ten days, I stake out the territory of my home, counting and remembering steps. I feel as though I am in a fight, tired all the time, trying to storm my way out of this dark place.
Then there’s the emotional roller crying and laughing in inappropriate moments, yelling at the dog, cutting off Kelsey mid-sentence with some biting remark. I don’t recognize myself.
I spend much of my time with a phone in one hand and a radio in the other, flipping switches, alternating between taped and live voices. I call my father, who has returned to Baltimore, and my sisters. I report that the specialist remains confident that my sight will return, but so far there is no sign of improvement.
Kenny has told me that, night after night, I cry out in my dreams. I try to focus on positive thoughts, to guide the imagery of my approaching sleep toward a future full of hope, hut I am stuck looking backward, at my brother and the past. In my sleep, old pictures resurface, and I have the full spectrum of colors restored to me. This view of my childhood comes at a terrible price, hut I do not wish to give it back. I cling to these dreams.
In my family, everyone has always had their assigned role.
Polly, the oldest girl, is the questioner. She tries to get at answers by finding the right questions. The classic middle child, I am the mediator, looking at both sides of every issue. The third girl, Sally, is the listener, letting other people talk until they’ve figured out their problems on their own. Mary Clark, the fourth and youngest sister, is the cleanup batter. She takes a huge swing at a problem and almost always hits it out of the park.
Now, our biggest problem is my situation, and we burn up the phone wires talking to one another, trying to come up with a strategy to pull me through.
Sally is a psychologist. Dreams and thoughts are the currency of her trade. So she is the sister I tell first about my dreams of Robin.
“What kind of dreams?” Her voice deepens to its professional baritone.
“Mostly happy childhood memories.”
“Happy ones? Are you sure? And they are about Robin and you?” She rapid-fires these questions at me, not waiting for an answer. “Do you want to know what I think?”
“Yes.” I not only want to know what she thinks, but I want to think the way she does. I want to share her sunnier view of everything.
“All right then,” she says. “You are at a very low point. It’s natural for you to reflect upon every other sad memory in your life. But it’s comforting thoughts you need now, not disturbing ones, so you have to refocus your concentration.”
“How do I do that?”
“Well, each time a sad image comes to you, visualize sweeping it away, replacing it with a happier picture.”
“Sally, we’ve been doing that as a family for years. But don’t you ever wonder what happens to the other pictures. Where do they go?”
“You don’t have to worry about that now.”
“But that’s all I worry about–everything that’s been hidden and covered up. It’s come back to me now for a reason. I have to believe this.”
“I think we’re going around in circles here,” she says. I can hear her little boy calling for her in the background.
“Listen, I can hear this is a had time. I’ll call you tomorrow, all right?”
I hang up and dial the next number.
“Polly, do you remember when Robin was beaten up by that gang of kids, my freshman year at college?”
“Oh, Jackie, there were so many times that he was hurt. I’m not sure I recall that particular incident.”
I tell Polly what I remember. It was October 1973, and I had just met Kenny. I was home for the weekend. It was a sparkling fall afternoon, and I was in the kitchen, looking out the window, thinking how perfect everything was–an 18-year-old girl in love.
I heard knocking at the door. It was our neighbors’ son. He told me that my brother had been “roughed up” by a pack of kids. They’d thrown things at Robin, called him names, then knocked him down and kicked him in the head.
“Jackie,” Polly said. “It’s hard for me to picture Robin’s face without some kind of bruise or cut. All those years that he was in the mental hospital, he would be beaten up all the thee, usually in a struggle over his things–his camera or radio, which Mom and Dad were always replacing. But I always thought that out in the real world and on his visits home, he would be more protected.”
“But, of course, he had even less protection on the outside. That’s why Mom agreed to admit him to Rosewood.”
“But he was so big and strong,” Polly says. “Why didn’t he ever fight back?”
We are both silent, thinking about this. It’s true that he was tall and not physically disabled, but his mental handicap showed in his posture and in his eyes. He was an easy target for cruel children.
“I’ve had a difficult time remembering him without his head being hurt in some way too,” I confess. “But recently, in my dreams, it’s been easier to see happier pictures. I’ve been seeing Robin in a different light. He looks peaceful. His presence brings me a kind of stillness, as if he is trying to comfort me.”
Speaking these thoughts confers a weight to them, something to hold onto. It’s been 11 years since Robin died. He had built a life for himself in the years after he had been discharged from the mental hospital. He was on his way to work from a group home when he was hit by a car. Polly, a lawyer then, handled everything. She reviewed the accident report and spoke to witnesses. They all saw it the same way: A young man, anxious to catch a bus, ran into the street into oncoming traffic. He never looked for cars. He was pronounced dead at the scene, in the crosswalk of one of Baltimore’s busiest intersections.
“Polly,” I say in a quiet voice. “When I can see again, I want to look through the bag he was carrying that day. I don’t know what I’d be looking for–I just want to see his things.”
“Oh, Jackie, I’ve never found the strength to do that. When your sight gets better, we’ll do it together. Maybe we’ll find out what he’s trying to tell you.”
My sister Mary Clark has always been a genius in math. She’s now a bank executive, who talks as fast as she computes, stringing sentences together like long-division calculations.
“Mom comes to me in dreams,” she tells me when she calls, having already spoken to Sally and Polly. “She gives me advice.”
“Really? You never told me this before.”
“Well, there didn’t seem to be a reason.”
Some things never change–we need permission to talk about the most important things in our family.
“Anyway, I agree that Robin is trying to tell you something by appearing in your dreams,” Mary Clark says. “I think he’s telling you to be brave, to hold on, you’re going to make it through this. You’re on your way to that old light at–”
“I know,” I rush in to finish her sentence. “That old light at the end of the tunnel, and not the one that is the headlight of the approaching train.”
She laughs. “Now that we have solved your problem, please put my favorite person on the phone. I want to know if she got the book I sent her.”
I call out for Kelsey and put the receiver down as soon as I hear her voice chirping away to my sister. I lie back in bed. I try to summon happy images.
I remember Robin and me, side by side, as children, down in Virginia, on a vacation visit to our grandparents. I remember the colors of that summer, the dark yellow of a piece of jagged glass that Robin used for finding crabs in the murky water, the blue of the tips of their claws, all the ivory and brown shades of our tanned hands, holding crab nets and fishing rods.
With all my heart I wish there were more happy pictures of my brother to summon. I had so many plans for making up to him all the lost, sad years, all the later family vacations we took without him. The last time I saw him, I told him I was moving to California. We talked about how I would buy him a ticket to Los Angeles, and we would go to Disneyland together–his lifelong dream.
He died before I moved, and the first time I went to Disneyland, I could feel him beside me, riding all the rides, shaking hands with his favorite cartoon characters, in life-size versions. I seize on these pictures that were never taken and rescue them from oblivion, if only to prize them in my blind dreams.
May 22, 1991
In our house, the living areas are upstairs, to take advantage of our ocean view. The bedrooms are on the lower level. I must climb the stairs–five steps to the middle landing, nine more to the top–for my first cup of coffee of the day.
A few weeks ago, Kenny stopped bringing my coffee downstairs. He didn’t have to tell me why, although he mumbled something about missing me sitting with him during breakfast. As an added incentive, he reads the newspaper to me. I don’t mind this routine; I’ve been getting up earlier anyway, so that I will have more daylight time to look for blue–the color that would be restored to me first, according to the specialist.
It’s been ten and a half weeks since my gray fog descended, beyond the range the doctor had forecasted.
“It could take longer,” he said. “But I still believe your sight will improve although you shouldn’t expect a dramatic moment. It will be subtle. That’s why you must concentrate on looking carefully.”
I reach the top of the stairs and stand for a moment, looking ahead to the picture window. Still nothing. I hear Kenny, rustling the paper, and reach for the counter to guide me the seven steps to the table. My hand hits something. It slides across the tiles. There is a loud crash.
“Please, don’t leave anything at the edge of the counter. It’s like you’ve laid a trap for me.”
“Good morning,” Kenny says.
“What did I break?”
“A little clay something that Kelsey made for you in school.”
“It’s all right,” Kenny says. I hear him get up. “Stay there, Jackie. I don’t want you to cut your feet. I’m coming over to clean it up.”
Then, when I least expect it, I lift my head to my husband’s voice and the grayness moves. “Kenny!” I shout.
The gray shape gets larger and takes on a blue tone as it moves closer toward me.
“What?” he screams. “Did you hurt yourself?”
“Kenny–I think I can see you!”
He grabs me and pulls me into his arms, but I pull back. I want to see more.
“Kenny what are you wearing?”
“That blue bathrobe you gave me years ago. I’ve been wearing it every minute that I’m around you.”
“Move around! Let me see you move, Kenny!” I am shouting.
“Mommy, Daddy, what’s going on?”
Kelsey! I want to see her–the shape of her moving.
I hear Kenny whispering to her.
“But Daddy, I’ve been wearing that blue dress every day since you bought it for me–it’s in the dirty clothes bag now.”
“Go get it!” Kenny and I call out at the same time, and then collapse into laughter. Finally, together, laughing out loud.
I have Kenny dial the doctor. When he gets on the line and I announce my news, he tells me he’s delighted. He reminds me that he had assured me my vision would get better and it did.
“So even great doctors indulge in I-told-you-sos,” I say, and he laughs.
It may take months before I have any functional vision, he cautions, and that’s going to be hard. In the meantime, I’m to keep looking.
I can see all the colors now. It took me over a year to get them back, with Kelsey’s help. We went to places where I could feast my eyes on color–art museums, fabric stores, flower nurseries. My favorite discovery was the tropical-fish stores, where I could watch colors swim before my hungry eyes like tantalizing morsels of food.
Always the store clerks would ask if we wanted to buy something. “Just looking,” Kelsey would say, smiling.
In September 1993,1 had a second child, Benjamin. At 18 months old, he bears a startling resemblance to Robin at that age, with bright blue eyes and a cloud of blond curls. But the difference is that Benjamin, like Kelsey, has already learned how to look.
Some children never learn to look, and they turn into adults who cannot see the most important things in their world. It takes an early loss–something that had always been there and was supposed to be there forever. Something very important and loved must be snatched away, suddenly, unexpectedly, for this loss to be imprinted on a child’s mind.