Story

Once upon a time I had a mother. She was born on Christmas day sixty-two years ago. She had three children: A son born in 1971; a daughter born in 1974; and another son stillborn in 1974--my twin brother.

At my mom's memorial, one of her colleagues (an anesthesiologist she worked with), asked me, "Who was the one with the twin?" The question caught me off guard and I stumbled over lists in my head. Relatives. Friends. Brother or sister pairings she may have mistaken for twins. And then finally: "Oh! That was me!" And then, more sullenly, "That was me." "She talked about the twin a lot when we worked the OR together," she explained.

I never did learn the story about how my twin brother had died. When I was little, I would ask my mom whether it was my fault. "Did I eat all the food inside your belly? Did I take up all the space?" My mom always assured me that I hadn't, but she would stop short of saying anything more. I don't know how long he lay by my side without a heartbeat.  I don't know what my mom was like during those first few months of raising me without him. I don't know. We never spoke about it.

Years later, after she was diagnosed with cancer, she would ask the air what it would have been like if he had lived. Years later from that, this past June and standing in front of the hospital where she was receiving yet another albumin infusion, I had the same thought. It was as if that missing something--another shoulder for both of us to cry on--was what was making life so much harder than it needed to be.

And maybe life would have been easier if we were able to take up that narrative thread instead of this fraying one. Maybe. But who knows. What we have is what is. We're driven by the narratives we envision, but only live out just the one. Choose your own adventure--or perhaps more like a mad lib. So tempting to go back and make it play out better, sound better, look better, feel better.

And so we live [insert adverb] ever after.

Drowning

"Daddy, no!!"

As if I were a five year old. I was next to my mom and her breath was slow and gurgling. When you die of respiratory failure, your lungs fill up with fluid until you drown. I still don't understand why.

I think it was about midnight, or maybe more like 11, when the gurgling started to get bad. With each inhale, it was like ... but there are no similes. It was like she was breathing through water because she was breathing through water. I called the hospice nurse who told me we should turn her on her side so the fluid might drain from her mouth. Slow the process. Okay. But we couldn't make it work. She was too heavy and we couldn't make her move to the right to the right to the right without her rolling back. Her eyes would flutter open--uncertainty, sadness, fear, yellow--but she was totally unable to speak. What words could possibly ... ? And then the foam started spitting from her nostrils. We tried to keep things clean. We tried to make her look comfortable, not knowing if she really was. And then we tried not to look, embarrassed for her, but more embarrassed for ourselves. I snuck a peek, and a longer glance, and then I stared, determined. Who are you? You are my mother. I called the hospice nurse again. "I'll be right over."

And we waited. Crying. Petting. Holding. And then my dad climbed up on the bed with a flashlight. A big, grey flashlight that was still sitting on the night stand the day I left to come back to Seattle. "Let me look inside ..." and "Something is blocking ..." And I cried in that way that was outside of myself. I sounded like a five year old.

Daddy, no. The light. Nothing is blocking. Water. Fluid. The light will be too hard on her eyes. Daddy, no.

You do strange things. We all do strange things. He stopped before he could begin, put the flashlight on the night stand, and stepped away from the bed.

The nurse came. She was quick and no-nonsense and careful and then my mom was on her side with a pillow against her back, propping her in place. The thick fluid oozing from the side of her mouth. Swabs and tissue to clear out the rest. And her breathing eased. The gurgle softened. For now.

I know. The nurse did what you wanted only weren't sure how to do. Are you okay? I asked him and apologized.

grading grading grading 2

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1 month

That night, before she died, I would, sometimes, put my head in her lap. On her thigh. And I would press the hand I held against my face. She didn't respond to these gestures. It was too late at that point--too much morphine, too much pain, too much too much. But her body was warm and she was my mother and it was more for me than for her. I knew these would be the last times I could put my head in her lap and feel like she, my mother, might protect me.

Today was hard. The last few weeks have been relatively okay, for whatever reason. But this morning and all through the day was incredibly not okay. Tears tears tears. Wanting to pick up the phone and call her. I miss her.

I was remembering how I asked her, once, whether I could be a Brownie Scout. I was in the third grade. What I remember most was her reply. She argued that she didn't have the time. "I'm not that kind of mother," she said. "Don't expect me to be that kind of mother." And, really, she wasn't that kind of mother. Not to me, anyway. And I learned to live with it--and she became proud of a daughter who found friends on her own and developed creativity in her own weird and badgeless ways. And then we grew close.

I think my mom never really knew how to relate to me or talk to me until I could speak to her as an adult. Still, it's funny to me that I have all of these photos and brief memories that suggest something entirely different--different than the broad narrative I have in my head of how our relationship played out. But so it is. And I'm glad for the mystery and the contradiction. I'm glad because it was never simple. My mom and I. And it gives me more to hold onto--to understand--to struggle to remember--to make sense of and yet never really know for certain.

It makes it feel like she's a living and moving memory rather than a still and soundless one.

But fucking still and soundless still.

Second person 2

I just got back from Trader Joe's. The last time I had been was down in California. It was the day we drove to the mortuary to talk to our "counselor"--who really was nothing more than a big guy in a black suit with a contract for us to sign. Every detail about the mortuary experience was silly--the blue surgical gloves the "handlers" (they probably have a sugary name, too) put on before doing the gymnastics required to get my mom's body from the bed to the stretcher; the way they looked at each and every one of our faces as they left the house, saying "my condolences"; the shiny, windowless, white mini-van in which they drove her body away; the cheap cardboard box we ended up choosing for her cremation ("We would prefer not to have her in a container at all," we explained, "but since we have to choose one ..."). Before going to the mortuary, we stopped at Trader Joe's to pick up some flowers to place with my mom's body. It would take two to five hours for the cremation to be complete. Slow-roasted?--my aunt joked uncomfortably. Flowers, we thought. My mom loved flowers.

My parents (should I say "my dad" now?), like me, live just about a block away from a Trader Joe's. While I was visiting over the summer and the week before she died, I would take frequent trips there to buy food--something special for my mom. She liked their cranberry juice. She liked their soups. And, when it became difficult to chew harder foods, I thought, "Maybe she would like the macaroni and cheese?" (I ate the package I had bought for her the night before she passed.) The last food she ate was from Trader Joe's--two bites of their tapioca pudding. These thoughts became rough scars on my memory the moment she died. I hadn't realized it.

I dragged a bit while I was shopping today. You get that disorienting feeling. You remember your old thoughts there, and feel your new self here, but you (something beside mind or body, apparently) are caught in between. First person and second person, only now moving aimlessly between the two. You can't go back and you can't forget. And so you stay in the middle, discombobulated by your body that keeps you here, where she is no longer, and your mind that's scarred by there, where she still is. Still is.

And so it is, yes, one foot in front of the other. But I think it's okay, sometimes, to drag your feet, kick and scream, beg and plead. To remember.

Remembering

My dad forgot it all. Or a lot of it. He showed up at my aunt's house tonight with a yellow legal pad (the same kind he used to record my mom's daily drug intake) to ask my aunt what happened. Each day. Each moment relived. My aunt said they got to Friday and I wanted to ask, "The Friday before or the Friday after?" But the conversation went somewhere else before I had the chance to ask and then the question was gone.

My short term memory is shot. It has been for weeks now. I have this theory that my brain is trying so hard to retain and reflect on my old memories and my strong memories that there's just no space right now for the everyday. These small things that don't matter--they just float through the cracks. And so I don't remember why I opened the refrigerator sometimes. Or I don't remember how I managed to get from point A to point B when the sidewalk was closed. I'm certain I just walked beside the sidewalk, on the street. But it doesn't really matter.

I have glimpses of my mom. Close-ups. Beginning, middle, end. Her yellow eyes, opening. The foam that would spit from her nostrils. Her tongue, rubbing against her teeth, bleeding. Two times, toward the beginning, I walked away from her bed grumbling, "This is ridiculous." It was--the amount of pain she was in and how little I could do to help her. And then more morphine and I didn't leave her side except for trips to the bathroom and to the refrigerator, where we kept the morphine and liquid ativan. I held her left hand all night long, carefully replacing my right with my left, and then my left with my right, when one got tired or cramped. When I had to leave the room, I would slip my hand out of hers and my aunt would slip her hand in. We never wanted her to feel that she was alone. Though what I really hope, sometimes, is that she didn't feel a thing.

Something about the tip of the iceberg. You don't want to share these things because they make you feel guilty, responsible, embarrassed. And you share them because you know there's so much more to it than that. So much more. And you share them because that's what we do to keep going. So you can try to be here with me. And so I can lean on you.

And I wonder what my aunt is telling my dad. What details does she offer? What does she leave out? What does she remember?

The question

Should I make dinner tonight as I had planned (butternut squash and banana kofta curry) or should I just stop somewhere for a bite on my way back home from the video store?

I can always make dinner tomorrow and I have no beer at home ...

Hrmph.

Two weeks, one day

I arrived back in Seattle last night. Things get familiar, sometimes. But there is always something missing. Things look hazy sometimes. And I'm not really all here.

It's coming out in small fragments--those last two nights. In maybe a few months, all the bits and pieces that make up the story will have been shared. I'll throw a party and invite everyone who knows one thing or another and we can take turns with what we know. And then the story will be out. What a depressing party.

The parts that are hardest to talk about--that I haven't talked about--are the physical realities. Respiratory failure. The fluids. The sounds. The suffocation. Touch. Taste. Smell. Sight. Sound. All there. And then nothing but cold, and then colder.

I called my dad tonight and asked him, "How was last night?" He told me that when he got home after having dinner at my aunt's, it felt like everyone was around him. I asked him whether that was a good thing or a bad thing. He said, "Sometimes it's better not to think too much." He took a sleeping pill and fell asleep, he said.

Sand/ashes

I had this dream last night (my head has been full of dreams this past week--my subconscious already busy organizing, prioritizing, reflecting, understanding) in which I was talking to my Austen students about my absence. What I told them was that my mom was still hanging on. I said it proudly, though with some worry that I would have to leave to see her again, soon.

"Hanging on" didn't mean that she was still alive, though. It was a dream, after all, and Sandman doesn't make my dream life so simple (the other night, I had a dream in which I was getting the planned tattoo of my mom's name, only it was embellished with other images [a scene from The Simpsons--Homer's bald head shining--and long lines and weird symbols that ran up and down my arm]).

She had passed as she had in real life--only that hadn't meant she was gone. My dream world could not register her as not. So I was simply waiting to see her again, waiting to be with her again, waiting for her to get well, again. Waking up to a reality in which that dream vision is impossible was cruel, painful, and unfair. I knew this impossibility in the dream (I tend to dream lucidly), but I clung--believing, maybe, maybe, maybe. Just around the corner. Alive.

I was speaking with one of our family friends yesterday. She was telling us about the death of one of her close relatives--how hard it was for her when she was cremated (my mom will be cremated today). The body, no longer. No sign of physical existence--or, I guess, only sign and symbol of physical existence.

4 days later

I had this moment last night, when I was trying to fall asleep. I reached out my hand for the glass of water next to the bed ... and my arm was her arm. I don't think it meant anything ... except that I am here and she is not and people have been assuring me, "She lives in you. She'll never really be gone. You will help keep her memory alive." I took some Tylenol PM (the first time I've needed it) and then fell fast asleep.

I've been okay. As well as can be expected I guess. There is always something to do. Someone is always saying something to you. My brother's kids are here showing me in how many ways life goes on goes on goes on. Bouncing balls that almost knock over the framed photo of my mom, over there, garlanded with red roses and yellow mums. Everyone winces, but no one says anything. What can you say?

All the while, I have images and sounds in my head of that last night--images and sounds I want to keep present and alive as much as I want them to go away. Good as well as bad. Images and sounds. But no words. For now.

There are ants all over the house--stowaways, no doubt, on some bouquet. They crawl over the walls, and photos, and somehow onto your arms. And my nephew sings some superhero song. And my niece practices her arithmetic.

Rest

I'll be ready to write about her passing at some point. But not now. Her death was long and difficult for all involved. The hospice nurse was incredibly helpful, but ultimately, death was long and difficult. My mom knew it would be hard for me. She warned me and tried to protect me.

She waited for my cousin and his fiance to arrive before passing. Forty-two long hours since her body had first decided it was time. I hope she wasn't in pain. I hope she knew we were all there with her. (Is hope here denial, too?) All of the people that meant the most to her were there with her.

Please don't hesitate to check in on me. I love you all.

Rest. It's okay. It's okay. It's okay.

The longest night

Up all night. With her on one side of the bed. My aunt and I curled up on the opposite corners--her at the head, me at the foot. My nani on the couch in the bedroom. My uncle in the bedroom down the hall. My dad on the sofa downstairs, then upstairs wondering why he can't bring her juice as he usually does at midnight; wondering why he can't help her to the bathroom as he usually does at 2:30 a.m.

Her breathing, so light and with a moan on the inhale. Or maybe the exhale. Waiting. I get up. Work. I go back to sleep. And then I think about As I Lay Dying. You think funny thoughts on no sleep. You question whether you're the Bundrens. Your dad is like Anse. My mother is a fish. But everything seems clearer in the morning. Everything seems better in the morning.

Only it's not.

She's aware of us here with her. And I can't tell if we're doing enough to get rid of the pain. She can barely swallow down her pills. She can barely swallow. And we wait. We wait. Til 9 o'clock or hopefully earlier. Til the nurse will come and make something happen better. For us and for her. She still responds to me when I say, "Ma?" She'll say "Mama" (her nickname for me, pronounced Muh-ma).

It's okay. It's okay. It's okay.

Only it's not.

And I pray for deaths that are quick and quiet.

Soon ...

It's time. I'm not sure how much longer. But it's time.

Everything I think to write seems silly right now. Melodramatic. Dumb. That I'm writing at all right now seems like the silliest thing of all. But I needed to tell you because you've been on this journey with me for so long and I need you to be with me as I step forward, now, in some other direction. Dear hearts.

Queasy

And to top it all off, I think I ate some bad Chinese takeout for lunch.

My morning started at 5 o'clock, when I heard my mom at my bedroom door. She was convinced that we were either trying to take her somewhere (the hospital, I think) or that we were locking her in her bedroom. (At 3 a.m. the night before, she was convinced that my dad had bronchitis and needed to sleep downstairs.) By 6 a.m. my dad and I had coaxed her back to bed. She finally fell asleep by 6:30, only to wake up at 7 again. I found her in her bathroom, standing there, in just a t-shirt.

She's been asleep for most of the afternoon, but at around 11:00, after everyone else had left the room, she looked me in the eye and said, "I need to tell you something." She was lucid. "This will be very hard for you," she said in Hindi. And then, in broken words, she talked about money--and the rest of the family. I tried to assure her that everything would be okay. She slipped back into her disoriented state soon after.

I wish I could laugh more at how bizarre it is that there is no immodium in this house. I have my moments, I suppose. My aunt and I crack jokes with each other that no one else here would get. We laughed a couple days ago about how, when this is all over, both of us will be bald (both of us have been losing hair--my shower at home is clogged up). I made fun of her this morning for weighing herself on my mom's scale and misreading the number--worrying about gaining weight. It's all sick humor, really. Inappropriate really. And, really, not unlike the jokes the homecare nurse was making--except that we know our audience. Still, we both laugh loudly and nervously. I'm sure she'll joke about my diarrhea once she gets here with my immodium. I hope she will.

Snail's pace

Another hard, long day. I looked at my watch earlier this evening and was dismayed to see it was only 7:30. It felt like 11:00. And even now, it's only just after 10:00.

My mom grows increasingly disoriented. And it's just, well, a different kind of disorientation than it's been in the past and even than it was just a couple weeks ago. Even that gorilla conversation from before, the one that was so disorienting ... I knew exactly where she was. I could trace the steps she took to get from point A to point Z. Now, she feels so far--like the mom I know is already beginning to fade. She FEELS beyond recovery now. And so I feel like I'm doing what I can to make her comfortable and to make me who knows what and so ...

I'm not sure what else to say right now. More tomorrow.

Friday

Everyone here is shaken inside. And I spent the day thinking about how much I rely on your blog comments, e-mail, text messages, phone messages, phonecalls ... to keep me from tumbling over, flat on my face. Please don't stop. I also realized that my head is still in this place where I wonder what my mom will say about this whole experience once it's over ... what will she remember and what will she forget. And then also, today, I got scared that I would only remember her as she's been during the last six years. I have a hard time, sometimes, picturing her without cancer. Those images feel more like memories than realities. Still, it's a silly thought. My mom is my mom--with cancer or without. Of COURSE recent images are stronger, more present. And who needs the idealizing anyway?

Today was very long ... and though I got out of the house, it didn't do me much good. It's not even that I worried that I should be back with her. I don't know quite what it was, though.

This evening, we had a little birthday party in my mom's bedroom for my cousin. 21. Just my dad, aunt, grandma, uncle, and cousin. My mom seemed to be having such a good time ... but then, toward the end, she began trying to hint everyone out of the room. Brushing her teeth. Asking for help with her pajamas. Saying, "Okay. Bye." No one got the hint until she lay down in bed and turned on her side. When everyone finally left, she told me "Nothing feels good" (in Hindi--which I mention because something feels lost in the translation). I gave her an Ativan and she's resting now.

Blechhhhhhhhhh.

Labels, letters, lame jokes

A "home healthcare" nurse came to visit today. It's our way of easing us all into hospice.

And I just ... I mean, I realize I've been on the inside of this situation and I can't expect everyone to be where we are and to know what we know. But the endless and stupid questions and comments just seem so ... endless and stupid. "You have a lot of hair for having gone through chemo!" "Maybe I should go through chemo so my hair won't be so thin." And then you try to explain, even briefly, what the last six years have been like so they know why you're asking for their help and to explain to them how they can be helpful ... and you get nothing. They can give you nothing, I guess, because they see this all the time. I guess. "You're really lucky. Most people who hire us have no one." And it's not that I don't feel bad for those people. I do. But just because we have each other doesn't make us "lucky."

My mom had to sign six or so forms for the nursing agency. Each time, she signed her name differently . Sometimes, she would add an extra "p"--other times, she added several extra letters to our last name. Another time, she started over from the beginning in the middle. (Earlier in the morning, I sat with her while she "relabeled" all her pill bottles with creatively spelled drug names.) She finally got it right on the last form. The nurse didn't seem to care.

My mom's name (which means "love") in Hindi:

प्रेम

Yellow

The whites of my mom's eyes are completely yellow this morning--and her skin is beginning, slowly, to turn the same. Is itching related to jaundice?

I really believed that the effects of the new blood would last longer ...

Night

It's amazing what two units of clean blood can do for you. My mom isn't well, but she's a lot better than I expected her to be. And, according to my aunt, a lot better than she was a couple days ago. Still, she's in a lot of pain. She looks like she's in a lot of pain. And although she's lucid, you have to repeat what you say to her sometimes. Sometimes it's difficult to follow what she's trying to tell you. Sometimes it takes her a very long time to finish her sentences. Sometimes she doesn't finish them at all. Earlier today she kept on telling me, "That broken rock you gave me ..." and then "You know, the rocks you give me." I finally figured out that she was referring to her pills. I had to split one in half and it was jagged and orange when I gave it to her.

She slept for most of the day today. I made her mashed potatoes and gravy. My aunt made her some panfried fish. And then we all watched Jeopardy together and, I kid you not, one of the categories was PAIN, followed by, IN THE NECK. Both were categories dealing with the body and medical conditions and I just sat there thinking, "How does one get to be Alex Trebek anyway?"

Morning

Sorry for not writing last night. I got in late, spent some time with my mom, and then crashed.

Before leaving the hospital yesterday, my mom received 2 units of blood. The blood gave her enough energy so that, when she came home, she was actually able to climb the stairs up to her bedroom. She still has some energy this morning, but she's very weak. Drawn. Withdrawn.

Her thoughts are clear, though her words are few. Earlier this morning, she asked me, "Are you scared." I said, "A little. Are you?" "I'm okay," she said.