mama’s hands

mama's hands full pg 1

mama's hands full pg 2

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5 years

Wednesday April 18 marked the 5 year anniversary of my mom’s death.

I don’t know what to do with that.

Five years for anything feels like an important marker: relationships, jobs, the “cancer free” mark that means you’ll probably be okay.

Being pregnant again, another pregnancy without my mom, is carrying me further into the future. I want to ask her just as many questions as I did last time, different questions. How did she feel being pregnant while taking care of a toddler (me)? What was I like then, and how did I respond to news of the baby? When did they tell people? Did they tell anyone the name they were thinking of? How did they prepare their lives to add another child? How did she deal with the intense exhaustion that is being pregnant while caring for a toddler? Was she scared? What foods made her sick? (My dad tells me salad dressing was one, and that she just used lemon juice while pregnant.)

Other people talk about her less. Or, they only talk about her if I bring her up first.

How is it half a decade that she’s been gone? I am two babies deep in a life she will never see or be part of in an earthly way. In the back of my mind somewhere the possibility of her spending time with Giles exists, and it pops up, surprising me. A thought appears, an image of the two of them together: talking, walking, cooking, laughing. I feel a sharp twinge because this will not happen. The pain feels almost new.

I will give birth again, without her. I will touch that line between death and life, feeling for her.

There is still no map. Still no footprints to guide me, and yet I keep going.

Choose joy over fear. Live it, do it, on purpose. 

 

 

4 years

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This photo of Mama was taken in April 2012, at my cousin’s Bar Mitzvah, a year before she died.

It cuts me how impossible it is that she is dead now, that she died a year after this photo was taken. Despite the bald head, or even because of it (she looks so strikingly beautiful with her bald head), she is so alive here. She was a bit weak, yes, couldn’t stay up too late at the party. But we danced. We swam in the hotel pool. We put on red lipstick.

But it also cuts me how we knew, a little bit, and maybe unconsciously, that our time was limited. I had this constant pain just above my stomach from her fist cancer diagnosis in 2007 until she died in 2013. A tiny pain, subtle and not always noticeable, a tight knot. For three months in 2010 everything I ate made me sick. I went to a doctor about it and she told me nothing was physically wrong.

It’s still a shock  most mornings, that she is not here. Sometimes she is alive in my dreams and everything is normal. In these dreams she has been sick but recovered and I feel such great relief that she is okay. Then I wake up.

Giles doesn’t get to know her except in stories. This is a huge gap, a thing he is missing and will be missing his whole life. She would have been a wonderful grandmother (Meme, as she wanted to be called), a great friend, a huge presence for him.

I’ve always said I have no regrets. Mostly this is true. But there are some living in my shadow, in the back corners of my brain.

I’m angry. I’m also sad, scared, some other feelings I don’t know how to name.

It doesn’t get better. It will never be better. It will just be life. Good and bad at the same time. Heartbreak and joy.

I don’t know what else to say. I have a lot of things to say.

 

 

 

until the last minute

From my mom’s blog:

…Right now I’m starting to see myself in some new ways:  forgetful and distractable beyond the fog I’d come to know through chemo, radiation, whole brain radiation, radiosurgery and more radiosurgery.  I’ve started to hear my husband and children say things like “Mama, you really did know about that, you just forgot”  more often than ever before. I’ve gotten lost and damaged trying to find a path I use every day….I need help in ways I didn’t think I’d ever accept. I run into things.  I have numb pain from toe to waist on one side.  My head hurts.  I’m so cold.  Then I’m hot.  I’m not allowed to roast the chiles alone anymore.  I use a coffee pot that turns itself off so I don’t burn down the house.  I make brutal decisions about time and energy.  I ask my friends to walk with me, or to sit for me in exchange for my poor company. To give me healing or massage. Mostly I ask them to either paint with me,  or leave me to paint. Often I refuse most food I don’t make. I’m spending my grant money on a sink for the studio and a bed easel so the days I can’t walk down the stairs or just can’t get out of bed, I can still work.  A woman to drive me to drawing groups.  Paint and tubes,,,adding up how much I think I can actually use over the next few months.?  Now they don’t call me a survivor, or cancer clean, or any of those things.  THey tell me I’ll always be STage 4:   Stage 4 metastatic cancer with metastesis to the brain, CNS, around most organs….The only place I don’t seem to have breast cancer is in my breasts–but that may have changed, too. Tenacity is my other name. I ask for help, and I ask for understanding.  I am compassionate to old and infirm people in an even more profound way as I bumble through the woods…

But the main thing that scares me is that my energy level is dropping.  I’m tired.  I’m tired inside and if I think about it more than a second it brings tears to my eyes.   I’m desperate inside and I cry out in my head to all the dead women painters I love so much: Lee, Alice, Joan, Georgia, Frida, and to some men painters, too, Eduard, Pierre, David, Wayne, Elmer…..oh, please, everybody help me have the strength to make great work until the last minute.  Help me work, study, think, hold my brush…set up my easel—which way do the knobs go? Righty tighty, lefty lucy. I still have this fiery desire to make my work.  Even drawing boxes to learn linear perspective feels like achieving a goal, gessoing and sanding boards feels like living the dream.  And when I put brush in paint to board I know myself again, still, more deeply…that lets me know I am still here…

And to Life, I add, please help me to choose deep time with my husband and daughters, with my family and my soul friends.  Help me make the most of what is left of my energy.  Give me my husband’s love and help me not think of what it will be to go somewhere without him driving me, without him loving me.

 I’m tired inside and if I think about it more than a second it brings tears to my eyes.   I’m desperate inside and I cry out in my head to all the dead women painters I love so much: Lee, Alice, Joan, Georgia, Frida, and to some men painters, too, Eduard, Pierre, David, Wayne, Elmer…..oh, please, everybody help me have the strength to make great work until the last minute.

Love is all there is:  loving the work and loving the ones who share my life.

I now give away things each week, wrap up projects….organize the chaos so my family won’t have to.  I write the letters my daughter asks me for her wedding and when she has a baby.  I remind my daughters and my loving husband that I am on their side—always.  I arrange to make a trip home to Denver to connect with my family and friends.  How many kisses do you want I always ask my youngest nephews and they almost always say 100.  I ask for a million.  A trillion.  I always want more.

I see myself now as a weeping woman who is walking toward the door now, not with arrogance or tenacity or attitude but stooped with humility and deep tiredness, begging for a little more love, a little more work done, a little more time……

Viola Moriarty, 14 October 2012

This was written 6 months and 4 days before she died. I didn’t know then how close we were to the end. But it’s there, in her words:

I’m tired inside and if I think about it more than a second it brings tears to my eyes. I’m desperate inside and I cry out in my head to all the dead women painters I love so much: Lee, Alice, Joan, Georgia, Frida, and to some men painters, too, Eduard, Pierre, David, Wayne, Elmer…..oh, please, everybody help me have the strength to make great work until the last minute.

Today is March 24. In 25 days it will be April 18, the four year anniversary of my mom’s death. It is four years, a marriage, and a new human life since she has been gone. I don’t understand it. And yet it’s my whole life. I live inside this fact.

Love is all there is:  loving the work and loving the ones who share my life.

I repeat this in my head. Watch my baby on the monitor as he breathes in and out, steady in his sleep. Paint, draw, write. Dance with my husband in the kitchen.

I don’t know why I’m sharing this today in particular. But here it is. Trying to make my own great work until the last minute.

march 10, 2017

dana farber 1

dana farber 2

dana farber 3

My appointment went really well, and I feel really good about the medical team I will be working with. We stayed with some of Greg’s family who live walking distance from the hospital. They watched Giles while Greg and I went to the appointment. The snow was falling so beautifully, and the day felt auspicious since it was the anniversary of Lee’s death.

I don’t have many photos of him. This is one of my favorites:

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It feels important to share photos of Lee. For the people who love him, so we can look at as many of his alive moments as possible. He was really here, he was a person, he wore khakis and a tie for the homecoming dance in 2003. He had a certain way of standing.

 

3 years

me with guitar (to match pic of mama)mama playing guitar.jpeg

The week before my mom died, my friend Leah took the top photo of me. It was inspired by the photo underneath of my mom playing guitar on her bed when she was a teenager. I’d been wanting to recreate that photo with myself as the subject for a while, and since Leah (who is a professional photographer) was in town, we thought it was a good opportunity to finally do it.

A few days later my mom died. April 18, 2013 was the strangest, longest, and hardest day. There were things we had to do, so we did them.

Three years later, yesterday, it’s still really strange and uncomfortable, my insides felt itchy and out of place. My emotions flipped around from sad to calm to angry to cranky to trying to shut down.

Three years in the After. Baby Smokey rolling and kicking in my belly, getting ready to come out. I wonder if he will have her ears.

good grief

Every day is a new day living in the world after my mom died. I am 795 days into this life. My grief is just as big as the first moment, but it changes shape. Time doesn’t make it better, but it makes it different.

Some days I float and roll through my new life, feeling okay, feeling happy, and then it will hit me that the central human in my life is not here. She’s not part of this, she’s not here to tell me her thoughts, or to laugh, or to just exist. I still don’t know how to reconcile that. I almost don’t believe it. How can the world exist if she is not noticing it, painting it, coloring it with her opinions and cooking smells? I dream that she comes back, that it was all a trick, or that she is a zombie. I get really upset about dumb little things, because while I may be actually upset about those things, behind it is my sadness and anger about my mom being dead. UGH I’m so hungry and my clothes don’t fit right and my mom is dead. That person is chewing so loudly it’s driving me nuts and my mom is dead. I got on the wrong bus and my mom is dead. 

I hate when people tell me that my mom is “with me.” She’s not with me. She’s dead, and her spirit is off doing other things. She exists in my genetic code, for sure, and I wear her clothes. I’m trying so hard to let her be dead, to let her be Ghost Viola or whatever and fly around painting the sky and exploring other dimensions and to not wish her here so hard. I don’t know how to feel her with me in this new form. I want her in an Earthly way, nothing else will do. I’m stubborn, a quality I inherited from her (and my dad, too, we’re a stubborn bunch).

I wish people said I looked like her. My sister really is the one who resembles our mom as a young woman, it’s striking and everyone notices. Sometimes people say I have her laugh. Mostly they say I look like my dad. But I’ve always felt a similarity in our expressions, me and my mom, smiling, or talking with our hands, our style, the way we listen to people by looking right in their eyes. I’ll catch myself teasing Greg (my fiance) in the same way my mom would tease my dad– a fake angry comment, a smirk, an open-mouthed laugh accompanied by a little dance.

She won’t be at my wedding. This fact gets bigger as the date gets closer. I wonder what my wedding would be like if she was here to plan it with me, how it would differ from the real thing. Would I have picked the same dress? Would her ideas have been better? What would we have argued about?

What would I be like if my mom hadn’t died? This grief is my defining feature, her death the defining moment of my life so far– the line dividing everything into Before and After.

This is where I’m at today.

holding it in my hand

I finished the cancer comic book. With the help of a really lovely woman named Kate Barber and the Publication Studio at the Williams College Museum of Art, it is printed and bound and is a real live book I can hold in my hands.

adventures of a left breast

I want to cry. The intense joy of seeing the physical result of seven years of work plus the deep sadness of my mom not being here, not seeing this, and the sadness of everything we’ve gone through… seeing it and holding it I want to cry.

Reading the first part of this book, my mom’s part, is the only thing that makes me feel close to her right now. When other people tell me they dream about her or feel her presence I get mad, because I don’t feel it. It’s too much for me to feel it, or she just isn’t here, and I’m so mad, because she’s not here and she’ll never be here again.

But she’s in this book. At least, a part of her is. 2007 Viola is here, and I remember all these scenes. Reading her story in her own voice with her drawings and collages and handwriting is comforting and devastating at the same time.

We made this together. And I finally finished it.

Now that it’s a real live book, organized and formatted, I’m going to send copies out to publishers and hope it gets made into a book you can actually buy in stores, at comics festivals, and on the internet. I’ll let you know when that happens. (Incidentally, if you are a comics publisher reading this, feel free to contact me.)

My mom’s 56th birthday

It’s unfair that my mom is not turning 56 today. It’s stupid and sad and dumb. I hate that she will never be more than 54. She would have been really good at being old– the coolest, most kickass, cowgirl boot wearing old lady on the planet.

I don’t really know what else to say about it, but here I am drinking a big latte (“Give me the biggest latte you have,” is how my mom often ordered at coffee shops) and I don’t know what I’m going to do with the rest of the day. I will probably do some drawing. Maybe see a movie. Have a really good dinner.

My mom was really good at birthdays. In our family we have the tradition of waking up the birthday person really early by singing happy birthday and bringing them breakfast in bed. I used to lie awake on my birthday morning, pretending to still be asleep, listening for that soft singing coming from down the hall..

Mama’s favorite breakfast was bacon (extra crispy), orange juice, and coffee.

My sister was born three days after my mom’s birthday in 1987. I was two and have vague shadow memories of the day which could just be impressions left by people telling me the story so many times. But I was there, running around the hospital room in my pink converse sneakers, holding the doll they gave me (Linda Lou) so that I had a baby too. “Mommy, let’s leave our babies here and go home now,” I have been reported as saying. Mama always called Phoebe the best birthday present she ever got.

I wish I could take my sister out for wine and chocolate today. I wish we could play cards and laugh and cry together and listen to the mountain sounds and watch our mom paint the sunset. But since we’re on opposite sides of the world right now, I’ll reach my arms out and we’ll hold the whole world and Mama will be the sky and all the people that love her will be part of it and we’ll all eat green chile and homemade tortillas and sing Long Black Veil. We’ll ask, “Do you want to have something or do something,” and she’ll reply “do something” so we’ll go to the movies or climb a mountain and dance all night drinking red wine (dry and cheap) or tequila (never waste good tequila) wearing skeleton dresses and long earrings and cowgirl boots (of course). We’ll wear straw hats and paint outside (en plein air). We’ll pop popcorn and each have our own bowls and paint our toenails and watch the Alice Neel documentary.

We’ll keep living and keep having birthdays and it’ll never be as good without her but we go on anyway. We’ll do the things we love. We’ll make our lives what we want them to be and use our own brains.

I love you Mama. Happy birthday.