The years spent at home after my mother’s diagnosis, locked away in a sense, surprised me. I couldn’t understand how it had been decided for me, because I couldn’t pinpoint the moment where I lost my voice. I surprised myself often throughout those years in moments that I devoted to taking the best care of her that I could, knowing I had to be perfect but that I could only try very hard. Many people think that experience made me a better person. They’ve told me so. I wonder who I would have been without it, if I had gone back to school and done college later in life, instead of taking care of someone who seemed to hate me for reasons I never understood. It felt like trying to achieve the speed of light on a tricycle. Science at the time said that was impossible with any conveyance, but I was supposed to achieve it. I couldn’t. I loved her and I wanted to know she loved me no matter what life (and the best we knew how to do within it) did to us. I learned that things can change in ways you’d never expect, and that I should stop wanting. That first lesson was a good one. The second, I’ve spent years trying to unlearn. It’s a seductive coping mechanism that doesn’t work any better than unbridled anger.
I remember making rice pudding for her, just the way I always had over the years since I’d learned how to do it, because I hoped the simple ingredients would sit well in her stomach and the rich vanilla would satisfy her tongue. It broke my heart to see her hate the one thing she could still do after years of sickness — ingest food. How sad to want to lose yourself in the flavor of something that delights you and have no reason not to — not calories or fear of cholesterol or the need to pretend that there’s more than food in the world of pleasure — yet still not be able to.
I was afraid that it was the medication Mom kept tasting, but she insisted it was the horrible hospital food or my cooking. I didn’t want to get her hopes too high, so I made the pudding the night before without telling her, and packaged it into medium-sized containers at home so I could bring more the next day and the day after, if she liked it. There was only one nurse who would keep something for her in their refrigerator, but I never knew when she would be there and I guessed early on that it was probably against the rules. I decided not to depend on that since I was at the hospital every day anyway.
Mom’s doctor, our family doctor, came to check on her most days during her rounds. She knew how upset Mom was with me about the food. She had tried once to explain it to her, that it wasn’t my fault and I couldn’t do anything to alter her hospital meals and I wasn’t necessarily messing up the baked chicken I brought from home. Mom had berated me for getting it wrong, implying that because I was a vegetarian, I didn’t want to cook it anyway and was doing it wrong on purpose. But I had written down every step she dictated to me and made it exactly the way I did at home, when she liked it. The doctor was there the day I came into the room with the rice pudding.
When Mom eagerly tasted it and then plopped the bowl down onto the rolling bed tray, I felt the doctor’s eyes on me.
“You managed to mess that up, too,” Mom said and turned away.
The doctor said, “I’m sure it’s not the pudding. It really is the medication. It’s changing the way you taste things. There’s nothing we can do about that.”
Mom glared at her and then at me. “She usually does a good job with it. She just didn’t make it right this time.”
The doctor looked at me with understanding eyes and motioned for me to follow her to the far side of the room. “That was a good try,” she said. She looked into my eyes and I felt the kindness in her gesture. “Your mother is very upset, but that’s to be expected. It’s not your fault.”
I was angry with myself for letting a tear fall.
There was a time months later, when Mom was home again after another difficult hospital stay. Once more the doctors had warned the family to be ready for the end, only to see her rally and be able to go back to her own bed and familiar surroundings. A couple of weeks before that, at the hospital, I’d had to attend to a problem with one of the drainage bags the surgeons had fitted her with that was collecting some greenish fluid, like bile. I’d sent my sister out to get someone while I put my hands right into the spilled contents and held the bag where it was supposed to be. When the nurse came, she’d stared at me oddly while she got a pair of sterile gloves and put them on. I’d wondered if she thought I might be contaminating my mother, so I caught up with her in the hall after she had fixed the problem, and asked if I’d done something wrong. She said no and walked away.
During Mom’s first days home after that hospital stay, the top of one of my fingers, one that’d had a tiny break in the skin the week of the bag incident, got very swollen and tender. It was turning green. I was dumbfounded but didn’t ask the doctor about it. The thought that it could become some sort of horrible, life threatening infection crossed my mind, but at the time that felt like a very good reason for me to say nothing about it. Someone visiting the house, maybe my sister, saw it and said I should have it looked at. Something inside me was thrilled at the prospect of getting out for at least a little while on my own, just for myself, even if it was only to the doctor’s office. She knew what was happening at home, so maybe I could talk to her a little. I needed to hear something supportive. I believed that a hit of understanding would tide me over for a while, and I thought of it that way, the way I’d heard people talk about illicit drugs.
When I got there and the doctor came into the examining room, she saw immediately that my finger needed work. She collected some disinfectant, gauze, a little knife, and some sterile gloves. As she did this, I mentioned how good it was to get out for a short while. She glanced at me as though she didn’t quite understand. I decided to talk about my finger first. I said, “Do you think it could have gotten infected because I didn’t put on gloves before I tried to fix Mom’s drainage bag a couple of weeks ago?”
The doctor actually took a step back as if she needed the space to keep from hitting me. I froze.
“You cannot catch cancer.”
I was afraid when she said that because I couldn’t understand what she meant. Then in a split second, I realized she thought I’d said something that stupid. I tried to explain what I meant and that I was just wondering if I should have put on gloves first and I was only asking in passing and it wasn’t an important question — but I didn’t think she could hear me anymore.
“There is no way you can catch cancer from your mother.” She frowned at me with so much anger that I started to sweat.
“Your mother is very sick. Ovarian cancer is a difficult disease. You should do everything you can to make her as comfortable as you can. You need to stop thinking about yourself and focus on her.”
“I know,” I said. I hesitated for a moment. “It’s just hard sometimes… she gets so mad at me.”
The doctor collected herself and got to work on my infected finger. “Well, she’s going through something terrible, isn’t she?”
“Yes,” I said.
I realized I’d ruined my chance. Maybe I never had one in the first place and I had misread something, or I was being selfish. It was time to stop trying, so I sat still and heeded the imperative to keep my feelings to myself.
At first I tried to make my face soft in the hope that she would see that I wasn’t such a horrible person, but after that, because I knew I must have deserved it, I learned a new way to berate myself. In my head, I realized that I truly must have been a terrible and selfish daughter and, I went over all the reasons why that was true, and did it better than anybody else could. I became expert in all the ways my inadequacies could be driven home and in all the ways my mother must have been right about the things that were awful about me. No one needed to speak to me that way again. I spent the rest of my mother’s long illness speaking that way to myself while I continued to take care of her.
For a long time I wondered what would have happened if I hadn’t gone to the doctor about that finger. If I’d hidden the infection somehow from other people, and waited.
After my mother’s death, and so many years, I see lots of things in new ways, unexpected ways, healthier ways. But things still get hard when you’re forever denied a way of understanding the truth of an important situation. Knowing the truth can feel as vital as a parent’s love. Sometimes you’re not allowed either one.
When you’ve missed something important or had it taken away from you, you’re lucky if you learn that you really can ask for what you need. But you also have to learn that it doesn’t mean you’ll get anything even close. The asking can be very hard but the possibilty of no –the memory of how “no” feels– can be terrifying enough to leave you frozen. The hardest work is staying warm.