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Untitled

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.

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38 thoughts on “Untitled

  1. Its hard to put into words the emotions I have from this piece. I’m sorry, I haven’t been able to keep up-to-date on your blog lately, and I’m not certain if this is a short story you’ve written, or a true one. Either way, it is captivating in so many ways. I really do wish I could tell you why, but I can’t. I hope you’ll understand.

    May love always guide you.

  2. it’s hard dealing with a parent’s disapproval…and the conclusion that “it must be me.” as you know – it’s not. I have long ceased to punish myself for what my father could not give because he did not have it to give in the first place…because he never was given it himself etc., etc., and the anger distorts one’s behavior so, and you were there to be on the receiving end of it. whatever you went through (past tense), it’s certainly given you a deep understanding of human existence, and made you a fine writer to boot. continue…

  3. I agree, it’s hard to put into words the feelings and thoughts that your writings bring to the fore. It does seem so sad that you were denied affection even though you were giving everything to your mother, and that you were in effect told that you were selfish for even wanting attention or someone to talk to – and you sound to have been so young to have to deal with that too. I hope the wounds that caused have healed a little over time. xxxx

    • Thanks for reading this. Writing about this so openly is me trying a new way to close the wounds, speaking up so others who may need to know they aren’t alone with these kinds of feelings might find it. I wasn’t so young when this happened, but I wonder if being a ‘people pleaser’ type is another of the things that make a person’s behavior seem younger than it should.

  4. oh my. Your story really touched my heart and I find myself wanting to comfort the younger you that went through such hell, without the support and love you needed. I also wanted to smack the doctor for being so unkind and obtuse with you, as if you thought you had caught cancer from your mom rather than what you actually DID catch: An infection!

    One of the hardest things in the world is watching a parent deteriorate physically and emotionally. My father became a very angry man towards the end – although for the most part, he remained loving with all of us but Mom. She bore the brunt of it. But Dad’s anger would jump out at me at odd moments, totally surprising me. And while I wanted to be compassionate (because I *knew* why he was doing it), it upset me. OK. It angered ME to be treated so! LOL

    When people give us platitudes like ‘that helped you be the person you are today”, I think the answer is YES – but I don’t believe it’s necessarily the very best “US” we might have been without all the crap. It takes YEARS to unload some of the stuff that happens to us. To say we’re better off for it is a coin toss. Personally, I would have liked to see who I might have been had things been different when I was younger…and I think your question is a valid and honest one. (NOT that you are a terrific person, I’m sure! 🙂 But you know what I mean).

    Thank you for such a deeply personal revealing. I hope you have all the love and understanding you deserve now.

    • Thank you for your very kind comments, Janece. It’s a shame that so many add misplaced anger into their sadness as if that does anything to help anyone. All it does is add another layer of pain over everything, a toxic layer of pain. Thanks for reading this.

  5. The nurse was probably so curt because it may have been the hospital’s (or even the nurse herself) fault that you caught that infection. Happens all the time in hospitals. So she was rude to you and made up an excuse to twist your (intelligent) question because she felt threatened. Please realize that in times when people are vulnerable, the vultures circle and the meanest people will be there to make you feel bad. I learned that the hard way, and I hope you stop beating yourself up. You seem like a very nice person and I hate to see nice people get stepped on.

    • Thanks for sharing your thoughts on this, Emmy. You have a different view on that situation than I ever could have. Thank you. It helps. Most of the time I don’t beat myself up about these memories, but the sadness can creep in worse at this time of year when I close all the windows and it gets so cold. It makes me feel shut in again, but I’m working on turning those feelings around.

  6. I have a memory of my son, now 21, when he was around 3 — blond, chubby, saucer-blue eyes, adorable — and completely convinced that everyone he met would be delighted to talk to him. He toddled up to a grumpy old man in the mall once, (I’m sure he was quite convinced that he could cheer him up), put his hand on the man’s knee, and said “HI!!” with all the charm a 3-year old adorable child has at his disposal. And the man grunted, and looked away. The hurt in my son’s eyes still smarts.

    I’ve thought so many times since then how we are all born with this light and how the world can gradually stamp it out.

    I think sometimes, as I get older and older (and older!), that I become even more busy watching myself than I did when I was 15, afraid I’ll say the wrong thing, or do the wrong thing. There was a secretary in my department once who actually sent an email around to all of the faculty asking them please not to say hello to her every time they come into the office because it distracted her from her work. When I went to work at a different college I hesitated to greet people in the office — the secretary, the chair — thinking I was being considerate. Instead my collegiality was questioned and my professional fate sealed.

    And all of this is SO much worse when it comes from our parents. The people we want to believe love us best, and who sometimes, perhaps because of their own hurts and angers and disappointments and insecurities, can probably barely tolerate themselves.

    And don’t even get me started on the emotional inadequacy of doctors.

    Anyway, I am profoundly moved and saddened by this experience you went through. My mother is fighting two cancers right now. Our relationship has never been, nor will it ever be, what I would like it to be. I’ve pondered trying to talk to her, to see if I can make things better while I still have the chance, but I don’t see it changing anything, so I don’t. I hope I don’t regret this. I just try every day to forgive her. I hope you have found some peace, and have someone who can give you love, and hugs, and warmth, and acceptance.

    • I wish I could have written a response like this, Sheriji. My whole heart ached and beat, but the words would not come. Thank you for saying something so honest, when I couldn’t.

      I’ve never lived through a death of someone close to me. I’ve never tasted that pain. But, I would imagine that if I were dying, it would be incredibly hard, if at all possible, to accept. Distancing yourself from others may be a way of distancing yourself from a life you must leave. Its a way to condition your thoughts. Bitterness may come from the very fact you have to do this. To cope. I don’t know, but I do wish that more people were not affected by hard times. But how can we not be?

      I love the story about your blue-eyed son. His character shows what the world should be: complete love and wanting to make others happy. Paraphrased from my novel: love is the pathway that can bring healing to this world.

      I truly believe that.

      • Thanks, Jennifer. I think you’re right about the bitterness. That’s another reason I shared this here. I’ve said out loud a few times that now I know how I don’t want to die. I know I may be dependent on others whether I want to be or not, but I don’t want to leave them with feelings that skew much of what they knew about me before. I’m not talking about stoicism here, just the small choices one is still able to make. The choices we all make can mean much more than we think.

    • Thanks for reading this and commenting. I appreciate your kind words. From stories I’ve heard about myself, I started out in life a lot like your son. I had to learn to stand back because not everyone wants a smile or a greeting. I’ve also had those awful moments when what I’ve learned from a previous situation, turns out to be wrong for a new one. That feels like my hands have been tied behind my back. Now I try to lead with what I think is right and then wait for a reaction, but I also just stand back a lot. I don’t like that because it isn’t the real me.

      I hope you can try to have a little talk with your mother. You might not be able to have the exact talk you hope to, but at least you’ll know you gave her and yourself one more chance. After my mother’s passing I’ve learned that it’s sometimes about finding the words that mean for them what different words mean to us. I am shocked at how two people can be saying the same thing, but not recognize it as the same simply because of word choice. I wish you and your family all the best.

      • Thanks for your reply — I’ll keep thinking about it.
        What you say is really true, about the fact that words mean different things to different people, and sometimes it’s not even the result of a different word choice, but by the fact that we often hear through our own filters.
        I’m still haunted by this post. As I was tidying up the kitchen this morning I was thinking about how we’re all wrestling our own demons, and some of us have more demons than others, and some of us are better at wrestling, and some of us are tired of wrestling (Amanda Palmer: “And it’s really not that funny that I’ve been fighting all my life”) but those demons just sit down, then, and wait for you to come back to them.
        It sounds to me like you’ve wrestled yours down pretty well.

        These words: “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.”

        are especially powerful. But never stop asking. Sometimes it’s no, but sometimes, even sometimes when you least expect it, it’s yes.

  7. I’m sorry for your loss, Re, and the pain you went through when your own mother was having such a difficult time. Like Tony said, as children we can’t help but blame ourselves at times for that disapproval, but it isn’t always us.

    This is such a beautiful, heartbreaking story. I watched a close friend of mine lose her mother to cancer, and how difficult it was to see the person that raised her in such a state of weakness. It’s strange how the tables turn.

    You are a strong woman, to write about something like this. Again, bravo, a wonderful story. Thank you for sharing with us.

  8. Wow, Re, this mother stuff is really big and powerful. I’m so grateful to read this and glad that you have come through with such understanding, as the comments above say more eloquently. Watching your perspective emerge fills me with a sense of hope and strength. Sometimes it takes so long to be able to look back and see what really happened– but how wonderful when that shift happens! Thank you for sharing this, Re.

  9. That doctor was an idiot. She put words into your mouth when you voiced an absolutely valid concern about hygiene and she failed to offer any support to a person who was also going through a painful time. Remember, YOU can also get angry. And it doesn’t always have to be directed inward.

    The next time some primadonna in a white coat is obtuse with you, put that green finger in the air and direct her to sit and spin.

    My father died of cancer, but was also an alcoholic chain-smoker who was difficult on a good day. It’s not easy to come to terms with watching anyone die, but when your relationship to that person is already complicated, it can be hard to sort out your feelings of pity and compassion from the deeper conflicts that have always been at the root of the relationship. Writing helps. What also helps is learning to see the relationship as a whole, looking from both sides, and realizing that you are not to blame for illness or your loved one’s difficulty in coping with life and impending death. You did the very best you could for your mother. You are to be commended.

    Keep writing, my friend. Time is the great healer.

    • Thanks, Averil. I can see you’ve come through a lot of this, too. These days I’m trying to stay in my big girl pants, but it helps to hear someone else’s opinion sometimes; it keeps me from getting crochety. Thanks for reading this stuff and talking to me.

  10. Wow, Lady Sparks! I truly enjoyed this piece, despite the obvious hurt and sadness. Unfortunately, I know a thing or two about that unconditional love, and the host of emotions that arise from its absence, especially from such a primal point of reference – the mother. Seemingly supreme, so tied to all things nurturing, she’s given a power that no other provider or family member has. There is such intrigue in the dynamic of the relationship between mother and daughter.

    The fallout of misdirected and/or misplaced anger and rage toward the daughter – yes, even
    when we’re good and grown – reverberates and resurfaces in the most mundane of our actions, rearing its head in ways that make us feel less than whole, and somewhat fractured.

    This must have been an incredible release for you…and that in itself, is an amazing step in the right direction as you evolve, especially as a writer.

    Thanks so much for sharing this soul-opening piece, Re.

  11. I’m so sorry for your loss, Re, and for the unkindness you suffered during that time – both from others and from yourself. It makes me think of how I let past hurts and insecurities drive my own unkindness toward myself. Thank you for sharing that.

    I bet that rice pudding was awesome. 🙂

  12. Ré, there are so manysupportive comments here that there is little else to say except to offer my support and understanding. You have shared a little of your soul wth us and that’s very trusting. I applaud you for it. Somehow I wish we could chat and have coffee. You seem to me to a really soulful genuine person living and growing in some way every day.

  13. So many comments I’d like to throw out here, but they’ve pretty much been said, with eloquence, by others. What a great but sad story. Glad to hear you are healing. What sheriji said about her son is so true, except I’m the grumpy old man and the 3 yr. old boy is all my co-workers when I wish they’d just shut up and leave me alone. I hope her son still tries to cheer others up. And what Emmy said is so true too; many of us often lash out at others when we have made a mistake. But, whatever age you were, the professional shouldn’t have been mad at you like that.

    Years ago, I heard of a young (30s or early 40s) woman in my town who was dying of cancer, and how, just, MAD she was at everyone and everything. I’ve often thought of that, of how I’d be in that situation; I’m pretty sure I’d be furious too, definitely “raging at the (way-too-early) dying of the light”. My sister, when I went to visit her at the hospital a week before she died, said, when I walked into the room: “What’s all this?” Well, “all this” wasn’t a Broadway play, or a big parade of sorrowful friends and relatives, it was just one brother on a pre-planned trip across the state to visit her and her kids, and, even though she had had cancer for 4 years, I didn’t know it was the end, so of course I would visit her wherever she was, which happened to be the cancer ward on her deathbed. The next words out of her mouth, when I had sat beside her bed, were (a VERY pissed-off): “I’m DYING!” She was mad too, that another doctor, not her primary doc or the primary radiation doc, had brusquely given her the news. I wasn’t there when she had heard the news, but I ran into him later and didn’t tell him who I was, and he seemed like a kind enough person, though he was ex-military and of course inclined to getting things done efficiently. I guess someone had to break the news to her, and really, what is the right way? So I guess the episode has left me with a small understanding of how “both sides” act, when one is dying like that. It just plain sucks that some people can’t get a reprieve, a remission of several, or many years, like others can. My mom had cancer at 40 something, when I was 2 or 3, and again about 33 years later, and lived to be 94, but my sister was killed by the same goddamn breast cancer at 53.

    I’m missing it–was the doctor who was so kind to you about the pudding the same one who was so mean about the infected finger? That seems odd, but I guess we all have good and bad days.

    Okay, judging by the novel I wrote here, I did have to put my 2 cents worth in. This was a greatly written story, Sparks.

    • Thanks for reading this one, TTD. Yes, that was the same doctor. That’s another reason why it felt so surreal when she lit into me.I ‘m so sorry about your sister’s battle with breast cancer. I was extremely lucky that mine was caught very early and I didn’t go through so much compared to others. I wish my mother could have just talked, or even barked, about her anger instead of mostly being nice to everyone else but me. We could have cried together, or even cussed together.

      T, I appreciate your two cents anytime.

  14. Actually, First Son no longer emits that same kind of joy/hope/light to the world. He can be quite kind and interesting, but he can also be quite cynical and hard on people. The world has beat him up a little, as it does to everyone, although the most egregious was his first grade teacher, who was so bothered by the fact that this boy wanted to know everything about everything and wanted to ask 100 questions and “try” everything and wouldn’t sit in his chair with his hands folded that by the end of year he went from coloring his butterfly picture with every crayon in the box to coloring it with one big black scribble. He’s now finishing his senior year as a physics major at a pretty great college (so he’s recovered a little, although everything has come easy for him, so he never wants to give more than 80%), and thinking he wants to go into finance (along with 40% of the great math and science minds in this country) because he’s tired of being poor and the sciences take 10 years of post-bachelor’s degree to get a decent job in and he’d rather “work hard and play hard and make bank.”

    Sigh.

    Sorry. I was just thinking this was too great a digression to post as a comment to the original post, but I’ve decided not. The world beats up on everyone. I try really hard, when someone behaves so terribly or hurtfully, to imagine that maybe they’re having a really hard time in a way that no one else knows (because, really, usually, no one else knows). But I also think that, if we could all just take a moment and be kind, there’d be a lot less pain, and a lot more joy, in the world.

    • Amen, Sheriji. The world is full of envious, hurtful, ugly things and people. But, there is also a lot of beauty and life to share, as well. It’s just up to the individual to decide what is worth spending time on, and what is worth sharing with others.

      I recently wrote a short, creative piece on what I think would help the world be a better place, if you’d like to read it. It is called “Scream: ‘I’m Alive!'” and you can find it here: http://lbcommuter.com/2011/10/04/scream-im-alive

      Always,
      Jennifer

  15. Hi Re, I read this piece ages ago and it raised so many different thoughts in my head I couldn’t put them down over here. But I kept coming back to it, because I felt this was an important post for you to have articulated, and I couldn’t let it go by without saying something to you, just to offer a virtual hug if nothing else. And every time I came back to say something, I saw even more thoughtful, heartfelt comments, and I have read each one with interest…and left again without saying anything!
    So I second, third and fourth a lot of things that have been said here. I love the dialogue that ensued from what you wrote and how your own honesty compelled so many people to share their own stories.
    I loved this :
    ‘Knowing the truth can feel as vital as a parent’s love. Sometimes you’re not allowed either one.’

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