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.

 

business

I have worked a lot of jobs. At age eighteen I went to college to study theater, writing, comics, and dance, with the dream that I’d make it work somehow– I’d find a way to make a living at this crazy thing called Art. So I never committed myself to a full-time job. I worked multiple part-time jobs at once, scrounging for any little bit of time to draw and write. I drew comics in the box office and the projection booth at move theaters. I wrote short stories in emails to myself at receptionist desks. I sketched on the subway, worked on story ideas at babysitting gigs after the kids went to bed, wrote in diners at 6am. I lived close to the bone, making just enough money to survive.

While living in New York City I walked around to comic book shops asking them to sell my little self-published mini comics, and got feedback from store owners about how to make them look more professional. I modeled for life drawing classes. I submitted to short story competitions. I volunteered at MoCCA Fest in exchange for a couple hours of table time selling my comics. Any small way to make a tiny amount of dough from my art.

March 1st marks my one year anniversary of being “self-employed.” I quit my job to be a full-time artist and stay-at-home mom (we need a better term for this). So, how do I make money?

The short answer is that I don’t make very much. I am fortunate to have a partner who believes in me, believes in my work as an artist, and takes on the responsibility of supporting our family financially. This is the first time I have not supported myself completely since college. It’s hard sometimes, to reconcile this fact in my head, that my husband supports me financially.

But the truth is, if I were to go work at a job I wouldn’t make enough to pay for daycare or to make it worth it to not be home with my baby. And I would likely be sad and unfulfilled. So instead, I stay home and take care of Giles, which is a very important contribution to our family. And twice a week my mother-in-law takes care of him at her house so I can do my artwork.

Art Work. It is really, really wonderful that my only work (besides being a mom) is making art. It is also really hard. In the first couple months of Full-Time Artist Life I made just as much money as I did at my previous job. I taught a comics workshop, sold a few commission portraits, sold some drawings from an exhibit. Art income often comes in windfalls like that– for a few months I will sell a bunch of things, and then there will be long dry spells.

These are the ways I make money:

Teaching: this is relatively new to me. Last year I taught a five week Autobiographical Comics workshop for adults at a local art school. I am about to start teaching another workshop with the same school. This is a really nice way to make some money, the highest hourly wage I have ever been paid in my life– about $25/hour. It’s also inspiring, working with students and seeing their ideas and growth. A great way to make money in my field that is truly connected to what I love. It’s also a lot of work, and takes time and energy away from making my own things.

Commissioned Portraits: this is something I’ve been doing for a while. I don’t get a lot of commissions. Most art from people I know, friends and family. On my Etsy site I offer portraits, holiday cards, and invitations. Commission work can be tricky– early on I learned to be very clear with customers about what I do, what my style is, and that I will not copy the work or style of other artists. I change my prices pretty often, never sure of how much to charge, balancing how much I value my time with how much someone will realistically pay me.

Exhibits: these can be great or not so great. It’s a lot of work (and often expense) to put up a show and there’s no guarantee that I’ll sell anything. It can be fun, and it sure feels good to sell work off the wall. It can also be disappointing, and exhausting to smile and make small talk at openings, to hang and rehang work, to sell myself. My favorite part about doing exhibits is when someone I don’t know responds to a piece I made, and especially when they buy it.

Selling Other Stuff: I also make and sell t-shirts, tote bags, cards, etc. This is more intermittent, for example, when I have a specific idea for a shirt design and enough money to make a bunch of them up front. Then I sell them on my Etsy site until they run out. Shirts are hard because I never know how many of each size to print ahead of time, and often end up with leftover sizes that no one wants. Because of this, sometimes I will wait to actually print the shirts until I have several pre-orders. Cards are the easiest because they are cost-effective (they aren’t expensive to make, so I can charge less and still make a small profit. I’m a big believer in affordable art).

My ultimate goal is to get an agent and a publisher and have my comic books and short story collections published and for sale at stores. To contribute financially to my family and have lots of people read my work. The way that I am making this happen is by putting my work out into the world any way I can. Posting my comics on my blog, selling at indie comic conventions, submitting stories to magazines– just putting it out there and putting it out there. I am a big believer in doing things myself. I don’t like to rely on other people’s approval. If I can’t find someone else to publish my comics, I make them into books myself and find a way to sell them. I just keep going, keep making the work, keep sharing it, and things will happen.

Other artists make their livings in different ways, have different methods and different measures of success. This is how I work.

I’d like to give a special shout out here, to my dad. I often write about my mom on this blog, and how she is part of my artistic life. But my dad has always supported me– emotionally and creatively, even financially when I’ve found myself in a tough spot. He is the BEST exhibit hanging partner, audience member, and starred in an early short film I made. He may claim to be the non-creative person in our family, but he is an artist in life, in his own work, and in being a dad. I owe him a lot. So, thanks Pops. I love you.

self-portrait in towel

self-portrait-in-towel

I’m changing every day. My body, my mind. I have muscles in my arms from holding Giles as he gets bigger and bigger. I weigh almost the same amount as I did six weeks postpartum, but I feel strong and good most of the time. My periods are heavy and painful (no one told me before that postpartum menstruation is its own monster), but I’m used to them now. My milk production is slowing down. I cry at the slightest provocation by commercials or songs or how every night at dinner Giles seems just a little more grown up.

We’ve started formula. Giles drank it up without hesitation. I cried during the first feeding, but also felt a little bit free. I can see the finish line of having my body back, of my breasts getting smaller, of no more nursing bras, of no more pumping…of letting go of breastfeeding. It’s a freedom, and it’s sad too. It’s our special connection, our thing that no one else is part of. But we’ll find other things.

My hair is longer. I am less tired than I was a few months ago (still tired, just not as overwhelmingly so). It’s amazing how it really does get “easier,” although “easier” is the wrong word. It gets “different,” just like with anything. It changes. I know Giles better, and he knows me better. He starts to become a functional person– sitting up, crawling, kneeling next to the box of toys and picking out what he wants, pulling up to standing. He says “Mama” and “Dada” and other increasingly complex talking sounds. He and my dad have their own language– staring and smiling and making funny sounds at each other.

My grief continues to get “different,” and not at all easier. Missing my mom is part of my day, part of everything I do. Giles’ eyes have taken on a quality that her eyes had. It strikes me sometimes. He will look at a photo of her hanging on the wall and smile with recognition. He stares at her paintings and pumps his arms with excitement. I cry and cry. Sometimes I feel lost. Sometimes I am okay.

 

 

 

formula

a-plan

Why is there such pressure on mothers to exclusively breastfeed? I would never judge another mom for how she feeds her baby. It wouldn’t even cross my mind to do so. But somehow, feelings of guilt get into my brain about transitioning from nursing to formula. Most of the time I feel fine about it, and I know it’s the right decision for us. But then there are moments when emotion overwhelms me and I start crying in the shower, or while making dinner. I feel guilty. Guilty for what?

Guilt is a familiar feeling. Am I a good daughter? Sister? Friend? Wife? Mother? Am I taking care of everyone enough? Doing enough? Working hard enough? Do I eat enough vegetables? Watch too much tv? Am I too demanding? Too bossy? Was my mom mad at me when she died? Am I too selfish, wanting time to myself? Am I ignoring all my friends while I figure out how to be a mom? Did I pass on this mutated gene to Giles? Will having more kids be bad, because I might pass the gene on to them? Do I call my grandma enough? Is it awful that I still haven’t mailed our holiday gifts? And I’m really late on those thank you notes…Do I do enough housework? When was the last time I cleaned the litter box? Was that thing I said yesterday too bitchy? Am I not bitchy enough? UUUGGGHHHHH

How do we let go of guilt? How do we know that we are enough? How do we help others know that they are enough?

 

 

 

art as life

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Today I was interviewed on the community radio station in North Adams for a show called Creative City. I got to talk about my art and my life, how they inspire each other, and promote my upcoming comics class (is183.org for more info and to register).

It felt really good to talk about what I do. I’m proud of my life, and it’s validating to be interviewed on a radio show and have someone besides me refer to me as an Artist. It’s important to remember that I work, and it’s good work, even if it’s not a “regular” job. It’s a “real” job and I love it.

My mom and I used to discuss our lives as artists all the time– how we balance time/money/desires and manage the business side of art. I loved talking about that stuff with her. I don’t get to talk about it that much anymore. Not the way she and I would talk about it. I’ve never found another art friend like my mom, and I don’t expect to.

I miss her.

I wish she could’ve been with me on the radio today, talking about her art life. I can’t really talk about mine without talking about hers too.

My dad and Giles listened to the show from the lobby of the station while we were broadcasting. Julia played a couple of my song recordings, one of which was the “Giles Fox” song. My dad held Giles up so he could stand on the floor in front of the radio, and he danced.

 

mammo versus breastfeeding

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I know it’s my choice. To start weaning now and get the mammo and MRI as soon as possible (which will be about a year or so from now) or nurse Giles as long as he needs/wants and delay the screenings? I hadn’t realized how long it takes to wean a baby. It’s a slow, gradual process. If I start now it may take months until he is completely weaned. And it’s at that point that the nine month clock starts. So much waiting.

There’s emotions. And hormones. Breastfeeding is such a hormonal thing. At the very thought of stopping I start to cry, and I run over to Greg and Giles on the couch, where Giles is happily taking a bottle. I cuddle against them, my eyes big puddles of tears, Giles looks up at me.

And then there are moments when I feel ready, and know that everything will be fine.

Except everything isn’t fine. I’m afraid of what will happen to healthcare, to women’s healthcare specifically, to the idea of pre-existing conditions. I’m worried for my body, for my mind, for my future second pregnancy that will happen sometime during the Trump administration.

So many things to worry about– both big picture and very personal. I don’t really know what I’m going to do. But I am going to do things, one tiny thing at a time. Ask for help, seek out other moms who can reassure me or give me mother-led-weaning tips. Get back into some kind of therapy. Talk to my husband a LOT. Walk. Do yoga. Snuggle my baby. Cook something new. Buy local produce/meat/cheese. Get my son his first library card. Read to him. Dance with him. Sing. Draw. Write. Take a hot shower. Say “I love you” a lot. Keep my own medical records. Slowly shorten nursing sessions. Check my breasts for lumps. Call my doctors and ask questions. Pay attention to my body.

And after a lot of months, after a year, after an undetermined amount of time, get a mammogram and a breast MRI and get prescribed Lorazapam for these procedures to help calm me down.

 

human milk machine

Image

pumping

Because I have health insurance, I was able to get a free electric breast pump at the hospital after giving birth. Because I have a breast pump I am able to pump milk into a bottle so someone besides me can feed the baby. Because someone else can feed the baby I have a small amount of freedom to not be tied to an every-two-hours schedule of latching a baby to my boobs so he can suck nourishment out of my body.

Because I have health insurance I have mental health coverage. Which means I can go to therapy. Which means I don’t have to suffer alone and quietly while my hormones rage around and cause crazy feelings and exhaustion settles over my whole self and who am I now anyway besides a mom and human milk machine?

Because I have choice over what happens to my own body I was able to grow a baby and give birth to him at a time when I was ready to do this, and wanted to do this. Because of that I am a good mom, and my baby has a healthy, happy, safe home to grow up in.