Fate took a hand this morning when Evelyn Meadows, the wonderful woman who had been my nurse at the hospital, came back. I couldn’t have been happier. I was just coming out of a dream that had me walking along the top of a hill. Puffy pastel clouds floated close to the ground. Lightning flashed. My legs and arms seemed stiff and heavy and I swung them about as if sleepwalking, my eyes closed, feeling ahead of me. What I remember most about the dream is that I was so very cold.
Then I heard Evelyn’s voice somewhere off in the distance.
“I’m here,” she said. “I’m so very sorry. But I’m not going anywhere now.”
It was a voice that was familiar to me, and it seemed to be coming from beyond the clouds somewhere, behind the lightning.
Then I heard her voice again, and it pulled me out of the dream entirely.
“It’s me,” she said. “Remember your nurse from the hospital? Evelyn? I’m back. They tried to keep me away. But they didn’t succeed. Don’t ask me how. I’ll tell you later. Do you want me to stay?”
“Yes,” I said instantly.
Her soothing voice warmed me. I felt nostalgic.
“I’m so glad to see you. Are they treating you well?”
“Yes, but I’m glad you’re here. I’m going home today. I wasn’t happy when they took you away. They told me it was for the best.”
“Don’t worry about that now. I just had a little talk with Dr. Bernstein and your wife out there. They weren’t expecting me. And that’s an understatement. I could have come here sooner, but I didn’t. I wanted to sleep on things. To decide on how to do it. You can’t see me, of course, but I’m wearing my regular nurse uniform. Put it on just a little while ago and got in my car and drove over here. Parked outside and walked in. I could hear my heart pounding. But I walked in just like I was reporting to work on a regular day, and right off there was the doctor staring at me. You should have seen his face. I didn’t give him time to think. I walked up to him and read him the riot act. Told him that you needed proper nursing and that was my department, and if he tried to stop me then a lot more people than me would know where this building is and who Frank was. And you know what, Mr. Howard? He just wilted. Kinda pitiful, if you ask me. He backed away and motioned me in here. And you know something else? He doesn’t look very well. But I think he’ll be glad I’m here.”
“I’m glad,” I said.
“Are you? I hope so. If you only knew what I went through to see this fine day. But I won’t bother you with all of that. The world has too many troubles as it is. You have other things to worry about. Have you had rehab this morning? We need to get those muscles limber.”
It was as if she had never left. I felt elated. Lord knows I needed cheering up. I think she sensed that. She went on talking and moving me about. I listened to her and let myself think back to the early days in the hospital and all the activity that had spun about me. All that was gone. In its wake was a small group of refugees hiding from the world.
Oddly, as I grew stronger and more aware of my surroundings, the lousier I felt mentally. The more I connected with the world around me the less I felt like answering to it. I could talk to Catherine, but could not love her. She had stood by me heroically the entire time, but I had a feeling she was falling in love with Frank, not me. I could give advice to my son, but then he would disappear and I’d have to hear how the gallery was doing secondhand.
What did I have? Mental energy, and that was all. The nerve regeneration in my arm had stopped progressing, leaving me with the ability to wiggle it like a snake but little else. And the sensation of light remained just that: a vague lightness and darkness, foggy shadows that made me dizzy.
More and more, a new emotion had crept into my head. Anger. I kept it inside. I didn’t want people to perceive my frustration. But it boiled inside me. Who was I angry at? Two people. Myself, front and center. I hated myself for the weakness I had shown when given the transplant option. I should have held my head high and refused. It was a chance for me to be courageous and inspiring. But I’d taken the selfish way out. Was it right to choose life at any cost? I was a brain on a stick and nothing more. I was someone else’s experiment. Someone else’s life.
The other person I was angry at was Dr. Bernstein. This feeling had not always been with me, but it was blossoming inside. Anger at him for finding the ability to do this to me. He was my warden. He had encased me in a swollen cell from which there was no escape.
I thought a lot about dying. How nice it would be to go to sleep and not wake up. Not that I would even notice the difference. All I did every day was fade in and out, wide awake one minute and straining to hear the sounds around me and then, suddenly, falling into a dream or a nightmare that left me begging for quiet in my mind.
I asked Evelyn if she thought about death.
“Think about it? Of course. Seen a lot of it over the years. You’re not worrying about it though, are you? You seem to be doing very well.”
“Sometimes,” I said.
“Death’s a funny thing,” she said. “It’s terrible when it happens. Not to the person who dies, though. I can tell you that. Because when you’re dead you’re dead. You can’t think about anything and feel sorry for yourself and miss yourself or anything like that. Death is something for the living. That’s what I’ve learned. You see a lot of it at hospitals. That’s where people die. Used to be that people passed on in their homes in their own beds with their family around them. But not any more. Now we end up in a hospital or nursing home and eventually die in a room with a number on the door. And that’s when people cry and hold each other. Death’s for them. I know that much. Then they walk down a hallway and the person who died becomes a memory. The survivors think about what life will be like without them instead of what life was like with them.”
“Death seems attractive to me sometimes,” I said. “But I suppose you’re right.” I knew she was. I doubted that death was the answer—it would be just as cowardly a choice as my consent to the transplant. I had to stay and fight. I had to do and think things, like bringing the doctor’s board here to try to save him. Talking to his wife and to Earl. Being interviewed by Dave Hueger. Helping them see me differently. These acts were very important to me and the only way I could stave off the coldness that came over me when I thought about the thing I’d become. The state medical board made me see this clearly. To them, I was a freak on display. Maybe that’s all I was to Dr. Bernstein. Perhaps that was all I would ever be. A sideshow. A geek. I would go through life not much better off than a slug. They’d take me here and there. Show me off as a miraculous accident.
The worst part was that I foresaw that every day would be the same as the next. There would never be any change. What I do today I’ll do again tomorrow. And the next day and the day after that. The people I see and the things I think about will recycle endlessly. For the rest of my life until I die. It was a curtain of bleakness that left me cold.
These became my dual existences. One moment I’d be withdrawn inside my brain, thinking about death and how attractive it was. And then, just as fast, I’d turn around and find everything positive, especially after talking with Catherine and feeling her love. I’d move my arm, see clearer shadows, and I’d feel triumphant.
* * * *
That afternoon they packed me up and brought me home. Catherine was excited because it meant an end to hospitals and hideaways. They set me up in what was once the living room, and that’s where I figured I would spend the rest of my life. People would come to visit me. Science would eventually forget me.
After all the noise of moving and car doors and gurneys and wheels and equipment being moved, after sounds of lifting and people saying things like, “We’ll put this there,” after Dr. Bernstein said good-bye and that he’d be by early next morning to make sure everything was all right, a soothing quietness fell over the house.
And like it had been for a long time before the accident, Catherine and I were alone. She sat next to me, he
ld my hand and talked to me.
“We’re home now,” she said. “And we’re not going anyplace for as long as you want. We’re through running. Our house, honey. Just us.”
I thanked her for standing by me every day. I should have left it at that. Should have let her sit quietly with me and talk about Neil or the gallery. But being home seemed to cast a spell upon me. It turned my thoughts around and threw them about. I felt so small. Worst of all, I was home, surrounded by walls with wondrous works of art, paintings and sculptures that soared and captivated me. I’d collected them throughout my professional career and once looked forward to coming home at night and seeing them. My art collection made me proud. I loved showing it off. Only now I couldn’t see it. Never would again. It was an awful irony that left me feeling even more disassociated from the world I once inhabited.
“I’ve been thinking about dying,” I told her.
I couldn’t tell if she was shocked or upset. Catherine was too controlled for that.
“Honey, everything will be okay. You’ve had a busy day.”
“I’m serious,” I said. “I’ve been thinking about going to sleep and never waking up.”
“You don’t mean it. I don’t blame you for being depressed. But you don’t have to worry anymore. I’m here, sweetheart. Maybe you should rest.”
“That’s all I ever do,” I said. “I’m tired of resting.”
I felt her touch my arm and lay her head on me. “I’m here for you. No matter what happens.”
No matter what happens? That encompassed quite a lot. Pretty much everything. Would she really stay with me forever? With me? A debilitated piece of driftwood? What could I offer her? What was my kind of love worth?
“What if I really did want to die?” I asked her. “What if I don’t make any more progress? You’d help me, wouldn’t you? You wouldn’t want me to suffer. I know you wouldn’t.”
“I don’t know,” she said. “But you’re going to be fine. You’ve made so much progress. Look at us, Howard. We’re talking. Communicating. We’re doing what husbands and wives are supposed to do.”
“But not much else,” I said. “Anyway, I want to know. It’s important to me. Tell me that if things don’t work out you’ll help me.”
“Please let’s talk about something else. Things will work out. I promise. You’ll see. I love you.”
Those words made such a difference to me. “Maybe you’re right,” I said. “I love you, too.”
At my request, Catherine put the earphones on me and music filled my world. She was right. I did feel better. And I was tired. As the music enveloped me, I played a game that brought me comfort. I tried to decide what I would do if I was ever able to walk and see again. Sometimes I saw myself going to the beach and running along the water. Or hiking down the Grand Canyon. Perhaps attending a gala art show. This time, I let myself overtake Catherine as she was doing housework, grabbing her from behind and laying my lips on the back of her neck. She melted back into me and I took her into my arms and carried her into our bedroom where I placed her gently on the bed and stood above her. Then I smiled at her knowingly and touched her knee and took her shoes off. I turned off the lights except for a single bulb shining from the closet and lay down next to her, touching her, kissing her, removing her clothes and tasting her body.
Then the music lifted me up as if I had wings and pushed me over a boundless old-growth forest, and I went off to a quieter place where I could be somebody else for a while.
27: Catherine Lavery
I am an invisible wife. My husband can’t see me. I can be here or there and he won’t know. Can’t know. If I’m close enough to him he might hear me, but other than that I’m invisible. To him. To myself.
I try hard to do right by him, but I find it so difficult.
I never imagined myself being one of those women who stop being a wife to their husband, abandoning it for a new rank: caregiver. Because that’s what I am. Not a wife. Not the whole person I used to be. I didn’t recognize it until a camera’s click ago, but half of who I am is who Howard is. And now that’s changed—disappeared, really—though I talk with him every day. Even though I can touch him, share with him, seek his advice. I hate to think of him in there, and I try to hide these feelings. I’m ashamed of them. Maybe it’s because I’m so very tired. I hardly sleep. I’m expending so much mental energy. Trying to be strong in front of people while holding the hand of a person, a body, which I really don’t know. Maybe don’t have the right to.
I don’t know how much more of this I can take.
But, oh, aren’t I admired? Am I not the Jackie Kennedy of caregiver wives? Haven’t I earned my martyr stripes?
I can’t say it any other way than to confess that my life has changed entirely. Nothing endures from my prior existence. I can’t even remember a time when my life wasn’t full of legal puzzles, medicines, the gallery, Neil. I worry constantly. I have no room for myself.
I find my thoughts wandering. Not to me. Not to Howard. Not even to the person named Frank. But to his wife, Janelle. I can’t look at Howard without thinking of Frank and his unfortunate bride. Who’s to say who’s more unlucky? I might have been happier if it had been Frank’s brain in Howard’s body.
My mind is filled with contradictions and confusion. I don’t know how to feel. And I’m ashamed at some of my thoughts. Here’s why I hate myself.
Sometimes I secretly wish that Frank will reject Howard’s brain.
Every morning I wake up and wonder if this is the day that I’ll see him and he won’t respond. I’ll touch him and call his name and try to wake him from one of his dreams, but he’ll just lie there cold. Dr. Bernstein will start thumping on his chest and shooting him full of drugs. I’ll step slowly to the back of the room and watch. Then I’ll close my eyes and hope that efforts to revive him will fail.
I think a lot about how my life would be without him. I know it would be terrible. But at least my life would go on. There would come a time in the future when I could look back on these days and view them with some objectivity. Not tomorrow. Not next week or a few months from now. It would be two or three years. Something like that. I’d be working in a small shop somewhere and people wouldn’t know who I was. I’d work short days. Maybe a part-time thing. I’d pretty much come and go as I pleased, setting my own hours because I wouldn’t have to work. But I’d want to keep busy. People would nod at me and say good morning, and I’d have normal conversations about things in the news or the latest episode of a popular TV show. I’d take late lunches with some of my old friends and we’d sip tea. At night I’d go home and turn on lots of lights. I’d sit on the couch with a good thick book beside me and a light afghan over my legs. Matisse would sit next to me and lean over, asking to have his neck rubbed. I’d sit there and grow old. It would be a peaceful, pleasant life.
The other thing I think about is Frank. His youthful body haunts me. That’s the part of me I hate the most. My attraction to Frank is powerful and intoxicating. I can’t be in his presence without wanting to touch him. Sometimes when I’m alone with Howard and he’s sleeping I’ll slowly pull his sheets aside to marvel at him. I pull up his shirt and rub my hands over his abdomen. Touch his penis, stroking it, kissing it, letting it free as if to air it out. It’s a dangerous, erotic sensation that I haven’t felt in years. I try to deny it. I suppress it, because I find myself thinking more about Frank than Howard. I’m ashamed.
In a way, coming home has made things more difficult because now there are no distractions. No hospitals or secret buildings. No driving here and there and worrying about being followed. No news conferences and worries about external things. Now, I hardly leave the house.
My daughter-in-law Emily came by this morning with the boys. She’d asked if I could watch them for an hour while she ran a few errands. She arrived carrying the sleeping Joshua. The gorgeous towheaded Jacob was at her side wearing an oversize bright red firefighter’s hat.
“How’s Dad?” aske
d Emily.
“The same,” I said, trying to smile, welcoming them in.
Emily went to the guest room to put Joshua in our port-a-crib. I kneeled down and tapped Jacob’s shoulder. “Hi, Mr. Fireman. How are you today?”
“Good.”
“Just good? Have you put out any fires today?”
“No fires,” he said, frowning. “Can’t find any.”
“No fires? Oh my. Maybe we can find one in here. You want to help me look for a fire? We can put it out together. Okay?”
“Okay,” he said.
Emily returned and put her arm around my shoulders. “Are you all right?” she asked. “You don’t look so good. Maybe this isn’t such a great idea.”
“I’m tired is all,” I said. “Didn’t sleep well last night. But don’t worry about me. I’ve been looking forward to the boys coming over.”
“Can I see Dad?”
“In the living room,” I said, watching Jacob scamper ahead.
I led Emily to where Frank was. Where he always was. “I think he’s sleeping,” I whispered to her.
“What’s the latest?”
“There is no latest. This is it. He’s doing better. Needs less life support. He’s comfortable. Dr. Bernstein says that’s the best thing I can do for him. Make him comfortable. His nurse comes twice a day to turn him, bathe him, and run him through some physical therapy exercises. She’s a godsend.”
We stood there for a while and stared at Howard. I wondered what Emily was thinking, but didn’t ask her. I think that’s an invasion of privacy, asking someone what they’re thinking. If they wanted you to know, they would tell you. But maybe I feel that way because lately I don’t want people to know what I’m feeling inside.
Emily reached out for my hand and gave it a warm squeeze. “I love you, Mom. Is there anything I can do?”
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