living underground in the real world

Mama Never Said There’d Be Days Like This, Because Mama Never Thought She’d Get Cancer

(For the past 10 months I’ve been keeping a journal of my life caring for my mother with pancreatic cancer. If you know my mother, kindly don’t mention the existence of this blog because I love her more than anyone in the entire world but also I gotta vent. If you’d like to read from the beginning, this series starts last November, here. I promise I do other things than whine about caretaking on the internet. See?)

August 9.

IMG_4882

The day after the dinners Jacob and I take my mother on the Walkway Over The Hudson. We wheel her in the wheelchair, just so she can get out a bit. She is weak like she was in April, puffed full of fluid like she was in April, I’m nervous all the time like I was in April.

The Walkway is so hot. I’m losing my heat-strength, the special power West Coast natives have to withstand any and all scorch. I notice it more every summer. If it means I can tolerate winter more, I’ll take it.

We have good chats while rolling along. Pushing a wheelchair is tougher than it looks. She’s so nervous I’m going to topple her out of it, yells in advance of every curb. Jacob takes over. She’s calm. Because he’s a man? Because he’s such an exceptionally capable man? Because he’s anyone except her daughter? Who knows. He certainly is a better driver than me, in all ways.

She says, “You know that drink of half lemonade and half iced tea? I invented that. People call it an ‘Arnold Palmer,’ but I’ve been drinking that forever!”

As we pass the Poughkeepsie Children’s Museum, she says, “Have you heard about my idea? A dog museum! A museum of smells. I’ve got to get on this. Have to talk to museum people.”

IMG_4866

A friend had asked to use some chocolate molds to make some chocolate. So I gave them to him. Then he gave me some of the chocolate he made, with a warning about how strong it was. I never get drug references. Weird, since my dad was a drug dealer. I never paid attention. Speaking in code makes me nervous. I brought the chocolate home. As Jacob and I were making dinner I nibbled on it a bit. I don’t do drugs but being dogmatic about it is stupid, so. Why not.

About halfway through dinner I start feeling more insane than I’ve ever felt, so dizzy I can’t walk, sickening flashing lights popping behind my eyes, a bottomless world of hell unfolding in my deepest psyche. On Jacob’s arm I weave my way to the bathroom and throw up for hours. Time is moving wrongly and I feel trapped inside a disgusting new reality: drugs. I forgot: I hate drugs. My body didn’t forget. I throw up twelve times. The kind of throwing up where in between you’re crying on the bathroom floor, begging for it to stop. The kind of throwing up where you have nothing more to throw up and are convinced you’re throwing up vital organs. The colors in the toilet bowl aren’t colors anyone should be throwing up.

I’m convinced I throw up for hours, but Jacob says it was about twenty minutes, one after another. I’m so worried he’s so worried about me, but later he tells me when I figured he was frantically Googling what to do with me he was just playing Words with Friends with Maresa.

“I knew what to do with you: let you throw up and get to bed.”

“Why didn’t you think I was seriously sick though?”

“You ate a bunch of weed chocolate and your body rejected it. I’ve seen it happen a million times.” It’s easy to forget that he’s toured with bands for fifteen years and was immersed in hippie culture ten years before that. He puts me to bed and I yell that him sitting on the bed and stroking my hair is making me dizzy and then I fall asleep in five minutes and sleep for twelve hours and feel perfect the next day.

For two weeks I tell everyone I’m straightedge now but then I go out to dinner and drink two margaritas and come home and put my hair up in a blue towel and start dancing around calling myself Marg Simpson.

August 10.

IMG_4878-2

Divided loyalties.

One day I side with my brother—my mother’s unkind and uncaring, selfish and childish!—the next with my mother—my brother’s aloof and oblivious, incapable and locked inside himself!

One day my brother sees something about Obama on TV and hisses at my mother, “What did your generation even do? Drugs? Fuck up the whole world?” My mother wonders at it in the car with me, miserably. “What did we do? I guess my generation, the hippie generation, was really a failure. Still, an unkind thing to say.”

Mark offers to take my mother to a play, and she agonizes about whether or not she should go. She hasn’t been on an outing without me…since she moved here, in December. We quiz Mark about where the bathrooms are, how far the walk from the car is, if it’s wheelchair accessible or not. She decides not to go. Mark reports that the chairs were hard and the walk to the bathroom far. How instantly how much of life is cut off from anyone with the slightest disability.

August 11.

I keep asking her if she needs groceries. She keeps waffling. She wants to be able to get groceries herself. I offer to wheel her around the store. She isn’t interested. I offer to take her with her walker, but she is rightfully scared of falling and, anyway, it’s a feint on my part, no way am I letting her in the health food store or supermarket with just a walker.

Because she can’t admit that I need to go grocery shopping for her she tells me once a day or so something she really really needs, which means her very uptight daughter obsessed with doing errands in the most productive way possible is going to the store for one lemon, something that makes her absolutely fucking insane.

So I politely keep after her for a shopping list and I get a lot of, “I feel so bad, I’m out of so many things. I feel too bad asking you to go. Maybe you could just get me some cookies, then maybe tomorrow get me a few other things?” Why does she think that’s a more guilt-relieving way to function!! I’m getting all hot-headed now, as I write about it in the ER with her on September 15 (spoiler alert).

I keep asking. I bring her food and notice all she ate for lunch was crackers. “Mom, I can go to the store for you today, okay?”

“No, it’s OK, I need too many things. I don’t want to take up so much of your time.”

“OK. I won’t go then.”

I pick up my bag and sail out of her apartment, though we had a plan to watch Seinfeld together. It’s the only way I know to get her to do something. Go along with her guilt, follow it to its logical conclusion so she’ll see how ridiculous it is.

She calls me.

I explode on her.

“This guilt isn’t healthy! I can’t stand it anymore. You live to put yourself down but I will not be a part of it anymore. I WILL NOT PLAY THIS GAME WITH YOU ANYMORE. That’s it. I’m finished. I’m done begging to help you. Send me the list or sit in your place and starve, ask my brother to go out to get your fast food. I’ll go to the store when you ask me politely, like a normal human being who is ill and needs their children to help them. I’M DONE.”

“Lagusta, I’m trying. I’m working so hard. I did two interviews today—“

“I could care less. Your JOB isn’t what will save your life. Doing your physical therapy exercise and eating well is what will save your life. You have to stop telling us that because you’re working you’re working on your health. Not the same thing. I’ve said this so many times. I can’t keep saying it. You need to be doing exercises you need to be going on walks you aren’t even doing the breathing exercises Dr. B. said you HAD TO DO TO KEEP YOUR LUNGS FUNCTIONING. The breathing exercises are just DEEP BREATHING. If breathing is too much for you to do to KEEP YOURSELF ALIVE, why do I even think I could do anything to help you?”

She’s colossally upset but so am I.

An hour later I get an email:

Thank you for this. Do you need my bank card?

sugar

zuccini [a cute and very rare typo]

wine

Tofu – firm

Fakin bacon

Cauliflower whole head

Tofutti sour cream

That eden organic sauerkraut you had

If they have daiya havarti chunks or slices – no other daiya

Frozen potatoes – tater tots and/or hash browns or frozen onion rings or all

Cat food – wellness, paul newman

Couple small potatoes unless get in CSA

grapefruits

Onion

Frozen waffles – 2 pkgs

Some kind of cold cereal – not granola

Earth balance organic margarine

Heinz organic ketchup

Mayonnaise

Ice cream or caio bella – 2 kinds

Amy’s frozen lentil loaf – NOT low salt

Bread? Grainiac is good

Mouthwash – toms of maine if have it

Ginger snaps or vanilla snaps

Vegan pizza shells in freezer on bottom right – thin small

tortilla chips & salsa

Optional:

Hot sauce – kind? Buffalo sauce?

Vegan blue cheese dressing

Crackers

Matzah? – probably don’t have

Any vegan cookies

Veggie stix, popcorn, junky crunchy stuff etc.

Olives

IMG_4901

I know I’m a food snob, but: I have literally never filled a shopping cart with so many processed foods in my life. Jacob and I marvel at each new shrink-wrapped item. Processed foods are so expensive! Holy shit. But I shut my mouth. Deliver the groceries. The next day everything’s fine.

August 12.

Jacob is playing tennis in Kingston and I decide to go to Outdated to do computer work. It’s around the corner from the health center that takes my brother’s insurance, so we ask if he wants to go with us and go to the doctor about his immensely swollen leg. Poison ivy completely covers the entire back of his legs, and one is swollen to twice its size. He’s ambivalent. Earlier in the day I’d offered to let him use my car to drive there, since he still can’t drive legally. “Well, could you give me a ride?” “Well, I’m already going to therapy with you, I can’t really do both in one day…” In the morning Jacob texts him again and asks if he wants to go and he says to come on by, so we do. In the car I say I’m glad he’s going to do something about it, and he says, grumpily,

“Well, you basically made me.”

August 16.


IMG_5020

We go to a movie.

My brother hasn’t eaten dinner. He’s done nothing all day and now seems to think we have time to drive him to a restaurant. My mother and I have understood that going to am 8 PM movie means the need to eat food beforehand, but concepts such as this are foreign to him. When we get into town I let him out to go wander around for food. I help her out of the car and across the street to the theater. She is so nervous to be walking. I realize we should have brought the wheelchair, not the cane. What the hell is wrong with me, why don’t I always bring it? There’s a large curb. The nearest curb cut is thirty or so feet away. We are approaching the giant curb and she tells me how in Chicago there are more curb cuts. Dear reader, are you aware that literally everything is better in Chicago than the Hudson Valley? If not, please let me enlighten you: it is. Literally everything. The curb cuts of Chicagoland are miraculous! Be sure to notice them on your next visit, friends.

We’re going slow, but she doesn’t make it up the curb. She falls, gently, slowly, me helping her down. I arrange her on the curb so she’s sitting comfortably and call my brother. Of course he hasn’t brought his phone. He never carries his phone. Which is fine because it’s not like he is co-caretaking a desperately ill person who falls a lot or anything.

In these situations I get very quiet and very calm. I’m thankful for that. I am sitting on the curb next to her hoping he comes back soon (I don’t trust my 116 lb self to lift her 108 lb self alone). There are a good number of people around, but they aren’t noticing us, until a man eating at an outdoor table at the restaurant next door comes over and helps me get her up. Then we’re back to square one. Standing in the street, unable to get up to the sidewalk. I’m trying to act casually, hoping my fucking brother comes back soon. The man comes back over and helps her up.

In the movie we’re all shaken up. For my mom this translates to anger at the popcorn.

She is obsessed with how terrible the popcorn is. This is an arthouse movie theater about which every vegan in the HV will tell you “I love that place! They have nooch!” My mother, a vegan, doesn’t care about the nutritional yeast. She wants fake butter. Privately I do too, we are both oilers, really. We want oily popcorn. I really only eat chemicals at the movie theater and I want my chemicals. But, knowing that Upstate Films doesn’t have it, I let it go. It’s plain popcorn with salt and nooch. Not very fun for an oiler. Real butter is their only fat option. The last time we were here she couldn’t get over how terrible the popcorn was. By “terrible” she just means “dry,” but she can’t quite get that.

“Why is their popcorn so terrible? I don’t get it. Why can’t they make it better?”

“It’s not that it’s terrible it’s just that it doesn’t have fake butter.”

“No, that’s not it. I’ve gone to theaters that don’t have fake butter and it’s better than this.”

“Yeah but that’s movie popcorn, it has all kinds of chemicals and crap on it. This is just popcorn.”

“But why do they have to make it to dry?”

“Because the only fat they offer is butter.”

“Well I’ve made plain popcorn and home and it’s not that bad.”

“Did you put Earth Balance on it?”

“Well yeah, of course.”

An hour later, as I’m helping her up the stairs to her apartment:

“I just can’t get over that popcorn.”

The next day, in the car:

“Hoooo boy, that popcorn!”

If I said to her, “When you complain so much about places I take you, it makes me feel sad because I’m trying so hard to bring you to fun places and do fun things that you will enjoy, and it makes me feel like a failure.” She would look at me with her very quizzical look like I’m insane. I know she just wants to chat, to commiserate, to do the whole Jew thing. Tonight it just depresses me.

The movie, Amy, is heartbreaking and weirdly beautiful. I keep hoping she won’t die at the end. What the hell is wrong with me. It’s a fucking documentary.

I’m always hoping to fucking change everything. Uselessly fighting, when a sane person would adjust to the current conditions and subsist. Optimists are idiots, really.

IMG_5206

August 17.

Driving to the doctor and I’m unable to shake last night’s mood. Why can’t I let her be. Why can’t I let go. Why am I trying to change her into the mother I want her to be, now? Last-ditch efforts. Scratching at the door of the house you wanted to grow up in, but she doesn’t have the key. She won’t, she can’t. You’re 37. Get over it.

I want to say to her:

I know that your way of saying you appreciate me is to constantly feel guilty about everything I do for you, to not tell me vital things you need until it’s too late and I have to drop everything I’m doing and rush to do them, to apologize constantly for everything. But I would fall to the floor in gratitude, kiss the ground, thank an invisible god, pay a tithe, do anything—for you just to say “thank you,” instead. “I appreciate you.” It would mean so much. Not “I’m sorry” because there is nothing to be sorry for.

I say nothing.

August 18

I start reading about Zen when I realize how tired we’re all getting.

The tiredness feels real, and dangerous. Hers, at being so weak. Mine, at being the caretaker. My brother’s, at being so depressed.

My brother slowly stops being able to do anything at all. Locked inside himself more and more every day.

I try to keep the soft heart that I have when writing in my journal or talking to Kate or talking to Jacob or at work. But with my family my heart gets harder than I want it to me. I try to soften up as much as I can, too much, I try too hard to be soft and so it backfires.

So I remember about Zen. Like most liberals I’ve been intermittently into Zen for years, what a Jewish cliché: a way to conquer

the guilt

the guilt

the guilt.

Being around suffering, the natural impulse is to want to resist the suffering. Reading about Zen I attempt to not resist the suffering, to resolve the dualistic mind into one: I see the suffering, I attempt to be the suffering, I try to not run away from the suffering. It is of course like everything involving Zen: fucking difficult and awful but it helps with the exhaustion the sadness the frustration the endless cycles of the three.

IMG_5036

Alone, I sing along to Things We Lost in the Fire over and over and over every hour I’m alone. Long breaths. The phrasing is a form of meditation and always fixes me by forcing me to breathe. I run errands by myself in the hot sticky languid slow air. I listen to Things We Lost in the Fire and I sing along and it forces me to take good strong breaths and the cramp I almost always feel in my heart is lessened. I am alone and I listen to Things We Lost in the Fire and it’s better.

August 19

I said how it seems silly I have to nag them to do things to help themselves (call eye dr/ Len therapist / mom therapist / DMV / health insurance is my list for the day) and my mom said “well I need to nag you too–I’ve asked you to bring chocolates for the home health aide three times now.”

*        *        *

“I read a long article in the New York Times about ISIS’ organized rape systems.”

“Yeah I saw that headline. I don’t want to know.”

She stares at me.

“It was unbelievable. They—“

“I really, really don’t want to know. Please, it’ll mess me up for the entire day.”

She stares at me.

“It was absolutely heartbreaking.”

I operate in Trigger Warning Culture, I pamper myself, I #selfcare my way through the world. She operates in a more rational world, fueled by curiosity and open eyes and the need to be in the know. A journalist’s way of being. I’m so afraid of being hurt. I turn away too easily.

Her flaws infuriate me, her strengths fascinate me.

*        *        *

I wake up at 3 am and send myself an email and this is what it says:

sometimes I don’t know if I honestly feel sad about what happened to Jesus or if I just feel sad about what happened to Jesus in the world of Jesus Christ Superstar.

IMG_5143

August 21.

We’re driving home from the doctor and we’re both hungry and I pull over at the rest stop and offer to get her whatever she wants. “Crackers?” “Sure, crackers would be great.” “Maybe Ritz?” Special treat, why not. “Ritz! That would be great. Listen, don’t get me those healthy crackers you get me. I hate them. I hate them so much. Your brother gets me the same ones. God, I hate them.”

I feel like she’s punched me. What the fuck is wrong with me, why do these fucking things affect me so much? Why do I invest so much into picking out the right kind of crackers?

I get one package of Ritz and two bottles of seltzer. She eyes every single cracker I take. The next day she sends my brother to the store to get “a big box of Ritz.”

Everyone is depressed and sad.

It goes on for days.

IMG_4946

August 24.

Making picklekraut, feeling sad, watching the M*A*S*H where that bomber thinks he’s Jesus. On days when it’s hard to find my heart, M*A*S*H and time alone in the shop always help.

August 27.

IMG_5195

It was very late the night I drove home after realizing how bad things were. I had stayed at work making soup, potato salad, and celery ice cream. With raisins. And peanut butter. Ants on a log ice cream. I didn’t make up this idea. I’m not so great and inventing but I’m good at fabrication and tweaking. I couldn’t leave work even when I was done with work because I was crying so hard that I couldn’t really get to the door. When I finally got to my car and drove it home there were a family of deer on the front lawn: a mother and four fawns. Is it weird to see fawns in August? They looked very new. Up the street a cop had pulled someone over. Red and blue flashing lights illuminated the deer. I sat idling in the middle of the street and stared at them. And they stared at me. I sat in the car for a long time.

IMG_5225

The two worst things about caretaking are:

feeling like you’re always slightly doing the wrong thing

and

never being able to remember everything. No matter how good you are at lists and big surprise I am very good at lists, you’ll never remember everything.

It’s a depressing thing.

August 28th.

IMG_5232

I am going on vacation.

Unbelievable yet true. I’ve slid far down enough. My plan is to go to Halifax to visit Kate at her zine residency for a few days, then we’ll drive back together. Then a few days at home, then visiting Jacob on tour in Philly. Getting out of town for more than one night for the first time in ten months.

I get up before dawn and my brother drives me to the bus. I take the bus to New York and walk to Grand Central to get a bus to Laguardia. I could have just taken the bus from Port Authority to Laguardia but I love the walk from Port Authority to Grand Central.

I love any kind of walking, but walking away from Port Authority is the best kind of walking. It’s just the beginning of rush hour, and I realize I’m walking the commute I had for the year I worked in NYC. Forty-second street at 8 am on a weekday, could anything be worse. I’m so happy to be out of my suffocating town that I’m practically crying. Everything feels perfect and no one wants anything from me.

The Chrysler building is my old best friend and I take touristy photos of it and remember how much I loved Ayn Rand in high school and the first time I connected the Chrysler building to The Fountainhead. Ayn Rand wasn’t a caretaker. She was a fucking fountainhead. Left her family to die in Russia. She was a horrible person and her ideas have been used by horrible people to justify horrible things but I don’t care because her books fixed so much in me when so much of me needed fixing. Her books pulled me out of my mother’s weakness and my father’s abuse and forced me to become my own human person. I’m not stupid enough for her books to have made me into a heartless libertarian. I’m not stupid enough to believe that you can’t take something of value from a horrible person. I love the Chrysler building. I love solitude. I love New York.

IMG_5248

I’m standing in line about to board my flight when my brother calls and tells me the home health nurse said her lungs are barely functioning and they need to go to the emergency room.

I step out of line. My mother calls me and tells me she’s fine, the nurse is overreacting, but she’s going anyway, and that I have to go on my trip or she’ll kill me.

I get on the plane and the minute we get into the air I go to the bathroom and cry until the flight attendant knocks on the door to see if I’m okay.

Halifax is amazing. Everyone at the zine residency social center and screenprinting collective are so welcoming and DIY cool in that calm Canadian way. The night of Kate’s show to present the zine and tape she’d made in the past three weeks I hung out on a high couch raised on four tires, scraped my hair into a messy high bun, and felt free to be a best self, calm and funny. Everyone seemed interesting in the way of people not from your town.

IMG_5310

IMG_5260


IMG_5377 IMG_5367 IMG_5357 IMG_5353 IMG_5352

IMG_5285

My mother is in the hospital the whole time. They remove fluid from her lungs and patch her up with this and that and the day I get home she’s sent to a rehab facility a block from my house, where she will be for the next two weeks, getting stronger and stronger.

Things feel better, in September.

For a while, at least.

IMG_5389

IMG_5263

3 Responses to “Mama Never Said There’d Be Days Like This, Because Mama Never Thought She’d Get Cancer”

  1. Megan

    Hi Lagusta – I’ve been reading these entries since they started. I just want to let you know that you are heard. Caregiving is hard and I know you are doing your level best.

    also I want to let you know that I’ve really enjoyed “getting to know” your mom through these posts. The bit about the TERRIBLE POPCORN made me laugh so hard my face hurt.

    You are an amazing human being. Thank you for being out here in the world and fighting for what you believe in.

    Reply
    • lagusta

      Hey! Thank you for this great comment. It means a lot!

      Yeah, that popcorn thing!!!

      Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Basic HTML is allowed. Your email address will not be published.

Subscribe to this comment feed via RSS

%d bloggers like this: