Friday, November 11, 2016

Embodiment and Election

I moved to Massachusetts to feel more at home. But part of my heart is from the Midwest. Cornfields stretch to the horizon and time moves differently. Distances are farther but you can get there in a straight line. Between the towns, the clouds look higher.

I learned a lot about humility from people living in the middle of nowhere. But it was also exhausting. It felt uncomfortable, surrounded by so many whose perspective veered into bigotry. I felt implicated in prejudice when other white people said, "I won't Jew you down," and "I think we have enough black people in our neighborhood," and "Glad to meet you, especially since you never know -- your next door neighbor could be a terrorist."

I'm moving through stages of grief about this election. Today I am depressed and wondering if it's a good thing to live so comfortably. I moved to a "more enlightened" community -- but now I see the full depth of our ignorance. I've sought willful ignorance of what it's like to live in the rest of my own country.

Hate raged through this election, and rages on through communities, battering LGBT people, ripping headscarves off of women, scrawling swastikas on bathroom stalls. Hate is unruly and powerful, but those who commit acts of hate are in the far minority. Hate is a just a distillation -- the purest form of our lowest daily instincts: fear, self-protection, the hunger for power.

Hate's favorite target is the bodies of women. There were so many women's bodies in this election. Melania Trump's naked body, spread across a fur coat. Bleeding bodies, tampons for Trump, the carnage of lost abortion access in Western and Southern states. Battered women's bodies, fat women's bodies, the bodies of grandmothers groaning with pain as they walked a mile to vote for a woman President. Hillary Clinton's body, and what she wore on it. Her clothes, her health, her smile, her brave shimmy. Our knowledge that her body had borne a child, and her daughter's body brought her two grandchildren. So many bodies. Not enough votes.

Listening to women of color in my neighborhood and online, the outcome of this election was no surprise. This is how the world is - it's just how it is. They're pissed at us white women, and I don't blame them. We've all given up on the white men, they're just not on our side. Sure, some of them stood with us, but far more of them did not. They voted for Trump or third party, and then told us what it is that we just don't understand. It was for our own good.

But I don't blame the election on men. Blame is a search for absolution -- and we're all part of this sin. This country is racist. Our culture hates women. Poverty and hard work coexist, and unfairness and pain can be soothed by a good scapegoat. Our country wages wars and murders children with drones. War comes home to our country through terrorism, and we hand it a gun. It's every man for himself, and we bask in denial as our planet grows hot. Crocuses bloomed this November. Even our flowers are confused and burn themselves out.

Here's what I know about mothers. We know how to clean up. We will solve the crisis and patch up the wounds. We're not afraid of blood. We're not afraid of tears.

Everybody, stop speaking! Listen to the mothers.

Mothers: what is your pain? What are you afraid of? What fear brought you to a man who promises to separate mothers from their children? What terror persuades you that another woman's body should not be her own? What hurts in your marriage, that you think the love of two men or two women could possibly threaten it? What do you need? What can be done?

Never mind about the men. Let them do their thing. But if mama's not happy, nobody's happy. What world would we live in if mothers knew only hope?

Monday, May 23, 2016

Things to love about bats

The bodies of bats are soft, their bellies round and full. They can squeeze down small or stretch their umbrella-wings out, impossibly wide. They are mammals that can fly!

Bats live in boxes and caverns, attics and underpasses, forests and barns. Most bats live in colonies and rely on one another for warmth, so snuggling is a way of life.  Solitary-living bats gather in groups during migration. Baby bats nurse from their mothers while in flight.

You can see a bat's perfect bones through its translucent wings. The skin stretching between a bat's fingers is as thin as my eyelid. A bat's bones are not hollow, like a bird's. Their bones are small, but solid.

The furry faces of bats are perfectly evolved to be sensitive. Some use their ears to navigate, others use their nose. Bats can see as well as any other animal can see in the dark, but they can hear things that other animals can't. They listen constantly. Darkness is not a problem for bats.

Bats have sharp teeth that they use to eat bugs (which is helpful) or fruit (which is delicious). Even bats that eat blood only bother grazing cattle, which have plenty. Although it sounds scary, all carnivores eat blood -- the vampire bat just dispenses with the wrapping.

The way bats work doesn't make a lot of sense. If you tried to make bats act like another kind of animal, they wouldn't be able to do it. Their feet are for hanging, not walking; their arms are for flying, not feeding. Some use their nose to hear, others use their ears to see.

Bats just do their thing. You can hate a bat and she'll just go back to her nap. If it's night-time, she might pause to consider, and then she'll let go. As she falls, with a few pulls of her arms she will lift herself neatly up between earth and sky. Above the trees, a bat doesn't care what you think. A bat is at home with the moon and the stars.

Saturday, February 13, 2016

Mothers Like Me and Hillary Clinton

I’ve spent too much time making the case that Hillary Clinton is a Progressive. 

Or that I am, for that matter. I have the credentials. I've been a Democratic Socialist and worked for Fair Trade and against US Drug Policy. I've protested for criminal justice system reform and against the second Iraq war. I gave my time and money to these causes, and yet never felt I quite belonged. There was always some man -- a younger or older white man -- ready tell me what more I needed to understand. Like, when I asked if a vote for Nader might put my reproductive freedom at risk by increasing the chances of a Republican winning the election? I was told this is just a tactic of the Democratic establishment to scare naive people like me to vote for moderates. When Gore (arguably) lost, I was told not to worry, he would have been just as bad as George W. Bush.

For a long time I've felt like maybe the problem was me--that I just couldn't compete. I could never devote myself to reading the right books and subscribing to all the Leftwing publications. And anyway, there was the business of raising a family to attend to. You know, the stuff that women sometimes do, which takes us away from The Important Work of activism and organizing. 

So I had my family and worked for non-profits that you'd say are in the human welfare field. A domestic violence and sexual assault agency, and an agency helping children with serious emotional and behavioral problems. I stayed involved in LGBT activism for awhile, but as the freedom to marry became more mainstream, I started to focus on politics closer to home --- specifically to educational equity issues in my children's school district.

The work I do today is still focused on social change. But I'm not sure it would qualify as "Progressive." Like, I'm not sure the work I do to educate and empower families fits within the priorities of today's Progressive Left. There's this idea that some problems are universal--bigger than the problems I choose to focus on. And, if those universal economic justice issues are addressed, then women's lives will be improved, because we are disproportionately victimized by our unjust economic system.

Here's what I think that leaves out -- a few examples you don't hear about in Progressive agenda as it's currently defined:
  • Rape.
  • Gender- and race-based pay gap.
  • Educational access and equity
  • Police brutality against young men of color.
  • Lack of access to safe and affordable contraception, preventative healthcare, and abortion , particularly among the rural poor.
  • Poverty in women-headed households.
  • Lack of access to quality affordable preschool.
  • Lack of access to mental healthcare and quality substance abuse treatment programs.
  • Job insecurity when a relative or child gets sick.  
  • Exploitation of undocumented immigrants.
  • Sexual exploitation and human trafficking.
Some of these issues will be improved by changing healthcare policy and better regulating the financial sector. But most will not. Many of these issues don't require radical change--they just require our leaders to focus on them.

I've become the kind of person who believes in transforming our culture while living solidly within it. Call it leading from within, say "it takes a village." This is the politics I recognize in Hillary Clinton and other mothers like me -- mothers who learn to get things done from within systems because we don't have a choice. Mothers like me have kids who depend on us to keep them safe and clothed, fed, housed, and educated. Mothers like me:
  • Refuse to stop demanding that someone fix the poisonous water in Flint, MI.
    • Demand adequate resources to fund our children's urban schools.
    • Open our homes and build whole shelters to take in the beaten and raped women of our communities.
    • Show up time and again at IEP meetings and Civil Rights hearings, demanding equal access to education for our children with disabilities.
    • Demand that the murdered bodies of our children be seen by the world, in protest to a world where Black Lives are treated as if they don't matter.
    • Show up with our wives and children at the County Clerk office to request a marriage license that will protect our families.
    The Progressive movement hasn't really taken mothers like me seriously, and so I guess I'm going to stop worrying about whether we are Progressive. Our politics are coming from a different axis than the one our leftist brothers are operating on. Our politics take place along the depths of experience--at our parents' bedsides and at the graduations of our children. Mothers like me will continue to hold communities together and to shore up the programs and policies that families depend on.

    Whatever it’s called, I wonder if the men of the Left will notice, and notice soon, that mothers like me are onto you. When you say you include us: you don’t. When you say our issues are yours: they’re not. I'm not going to keep trying to convince you that Hillary is one of you, because you know what? She’s not. 

    My Progressive brothers, I'm done trying to impress you. There’s too much work to be done.

    Saturday, April 5, 2014

    My Mother's Hair

    She wore it short when I was born. 
    Wash ‘n go, walk the dog, push the stroller, 
    arrange the house (endless redecorating), 
    finish college (walk the baby), bake the cupcakes
    (baby’s birthday). Give birth (baby sister),
    play with babies, get them to school.
    Find a career (more graduate school). 
    Her whole body stretched open - my father,
    my sister - all of us held together by her arms.
    Her smile, her competence, 
    her grilled cheese sandwiches. 

    As a younger woman, her hair was long. 
    Dark with waves in her Senior Portrait,
    pulled straight back on her way to work.
    Effortless in navy and black, in smart boots.
    Finding her way out, and her way inwards. 
    Her family: a nest (her family a cage).
    She met my father, my weirdly handsome father,
    my weird and fascinating father.
    He was older (much older) but funny.
    Smart. A professor. His hair had some gray,
    his apartment, few possessions.
    Newly divorced, a man of the '70‘s.
    When they first met, she was tired.
    Her hair was unwashed.

    My mother was a power house. 
    Clothes make the woman: commanding,
    bold colors. Makeup: no nonsense. 
    Serious hair that brought out her eyes. 
    She made everything better, smarter, more beautiful.
    Staring down men convinced of their own
    importance, my mother was unblinking.
    My mother talked politics, talked justice,
    talked art. She laughed full-throated
    at ignorance and hypocrisy,
    she laughed with abundance, she laughed with joy.

    My mother was exhausted, she was stressed,
    and undaunted. She raised two
    teenaged girls with our unruly woes.
    We were demanding, we were selfish,
    loud and loving. She applauded our insights,
    our moments of grace. She counseled us
    and fed us and bought us our clothes.
    Together, we laughed.
    She taught us who we are.

    When my father died, my mother wept. 
    For three long years, her sky was gray.
    Mourning gave way and she grew her hair longer.
    She remembered her body, took it back for herself.
    Like they say in a book: she took a lover.
    She drove with him (everywhere): to California, Alaska,
    New Mexico, New Orleans. She wore miniskirts,
    she wore pearls, she wore diamonds and cute shoes.
    She argued with him violently. She let him win.
    My mother wore a smile. All the time.

    Disease took my mother, but she would not be taken.
    Her body felt everything. She couldn’t make it move.
    First limping (new shoes), then the cane (new shoes),
    then the walker, then the wheelchair, 
    then the power chair (new shoes).
    She wrestled that disease, that stupid disease.
    She insisted, she resisted, she fought. She didn’t win.
    I stood in her bathroom as she clutched her toothbrush.
    Hands losing their grasp, she brushed with her fists.
    I held her hairbrush but I never brushed her hair.
    Her hair was hers. So long. So dark. So heavy. So beautiful.

    Thursday, August 15, 2013

    What Grace?

    A friend of mine was talking about the painful process of figuring out how to help her seriously ill father while also being a good parent to her young children and pursuing a rewarding but demanding career. She works in a leadership position where everyone relies on her to set the tone, and model the highest standards of integrity and compassion, regardless of how chaotic and painful things feel inside.

    “I hope that I can help my family cope with all this with as much grace as you did when you were helping your mom,” she said.

    “Really?” I asked. “I seemed graceful? I was NOT graceful. I yelled at airline employees and insurance company representatives who are paid minimum wage for people like me to take out my frustrations with their stupid company on them. I kicked my luggage and cried uncontrollably next to the turnstiles at the airport. I yelled at a guy at dunkin donuts for not honoring a coupon. I was short with my kids, I slept in all the time, I drank too much. I sobbed in my neurologist’s office when they wouldn’t give me antidepressants to help my migraines and anxiety. They weren’t even saying I shouldn’t go on them -- they just said I should ask my primary care doctor for them. I was a complete mess, most of the time. I can’t believe you thought I was showing any grace.”

    She looked so relieved. “Thank you for telling me that,” she said.

    My friend is a picture of grace. Impeccably dressed, she exercises regularly and parents with patience and thoughfulness. She excels as a leader and seizes opportunities to build her career and develop an even more impressive professional presence. She lives in a stylish home that reflects her family’s distinct identity and taste. She travels internationally, and she writes with a skill that could make you weep. She is a good friend.

    When my mother was dying, I would see her, and tears would well up in her eyes as she listened to my story. I would tell her I felt shredded inside -- torn and pulled and stretched thin and absolutely useless to everyone and yet required to be helpful and competent always. I ate unhealthfully and stopped going to therapy and ignored every bit of helpful advice anyone gave me about taking care of myself. I felt disconnected from my kids, and when I was with them I worried I should be with my mom. When I was with her, I worried about how my kids were doing, and felt guilty for the burden I was imposing on my husband by being away. I felt like a complete and utter mess. Yet my friend thought I’m the one who had it together.

    Why do we think other people handle things so much better than we do? If we like someone, especially, we think that because they aren’t walking around with mascara running down their face or hair matted from forgetting basic hygiene, that they have their act together unlike we do (even though we’re basically showered and coherent most of the time). I know a few folks who struggle with severe depression, and even these folks seem graceful and kind -- they may not be career go-getters -- they may hold back in some areas, but they love their kids and take time to make their children’s lives more joyful. When they leave their house, they look good, even if they are feeling awful.

    My friend and I, and many of us, it seems, have made the same mistake of thinking we must be failing because boy, does holding it all together feel hard. But the truth that strikes me as I think about my friend is that it feels hard because it IS hard. Life is hard. People we love will suffer, and they will die, and we will be powerless to stop it. We will get sick, our bodies will hurt and grow tired, and people will do things that make us angry. There will be injustice beyond our power to stop, and it will directly hurt people we know. Our children will experience pain -- they will learn that life is painful. Adversity will enter our lives in a messy jumble that we cannot pull apart.

    We don’t get to “take things as they come,” because sometimes things come at us so fast, and from so many directions that we get knocked to the floor. In my own life, within the past four years my younger son received a potentially life-threatening diagnosis, his brother was diagnosed with a developmental disability, my husband was laid off from his job, my career maintained a stressfully amorphous quality, and then my mother was diagnosed with a debilitating terminal illness, ALS, from which she died just 14 months after the diagnosis was confirmed.

    This was all very, very hard. And the whole time, I felt bad about how I handled it.

    One time, my sister and I were driving a bright red rental car from Chicago, where we had each flown in, to Macomb, Illinois -- about four hours away. We were talking and venting, laughing and getting choked up, scheming about how to remain a team as we helped our mother and her partner face her awful illness. We were the only two who knew what it was like, what we were going through -- the difficult dance of being dutiful daughters while pushing our brilliant and stubbornly independent mother to allow others to help her when she needed it.

    Lost in conversation, I lost track of my speed until I saw the police car’s lights and heard the siren. I pulled over to the side of the road, and I started to cry. I told the officer, “I’m so sorry, I lost track of my speed -- we are driving to see our mother, who is dying.” My sister tried to speak up for me and tell him I don’t usually drive like that, and he snapped at her, “Don’t tell me how to do my job,” taking my license and returning to his squadcar.

    We sat in stunned silence, waiting for him to return. He brought back my license and handed me a written warning. “I”m giving you this warning NOT because of what you said, but because you have a clean driving record,” he said. “MY mother goes to the hospital every single day because she is also sick,” he said, “and I don’t USE HER ILLNESS as an EXCUSE for BREAKING the law.”

    “Thank you,” I gasped, “I’m sorry,” I repeated, beginning to shake with anger and shame. My sister and I got out of the car to switch drivers, moving swiftly, startling him in the process. He stepped back, then said, more kindly, “I hope your mother gets better."

    “SHE WON’T,” we both shouted, slamming the doors; my sister pulling out onto the highway and driving away at an appropriate speed.

    This is what we do to ourselves. We lecture ourselves that the struggles we face are no excuse for failing to live up to our idea of how we are "supposed" to be. Why do we do that? Why do we act like an arrogant cop, ready to bust ourselves for making mistakes or having moments when we lose ourselves in our emotions? Why do we police our own grief for any sign of weakness or imperfection?

    I also wonder why we assume everyone else is ok. When my mother was facing her illness and I was traveling to see her at least monthly, then every couple of weeks, other people would open up to me about the burdens they were carrying. Most of my coworkers and many of my friends struggled to be dutiful children to aging parents who were starting to decline in health or mental capacity. Many of my friends have children with learning disabilities, allergies, or health concerns. Friends have crappy bosses, or more bills than they can pay; I have friends who’ve had cancer or lost a spouse to illness or accident.

    None of us are full of grace all the time. None of us is spared of the burdens of living and working and loving who we love.

    Instead of policing ourselves, we should spend as much time as we can commisserating, gossiping, sharing stories and laughing. We should catch ourselves being kind, notice that we are coping, reward ourselves for making it through the day instead of punishing ourselves for the effort it takes.

    “That’s life,” the saying goes -- often as a way to get someone, for instance a sullen teen-ager, to stop complaining. But there’s another way to say that: affirmatively, as an acknowledgement that yes, this is hard, and this is how life is. This is life.

    A saying I like better is: the only way forward is through. Stumbling clumsily, with jagged edges and shredded patience, the grace that we show emerges simply from our continuing to go on. We get up in the morning, we show love to our family, we work and complain, we sob and we laugh. That’s life.

    Saturday, June 22, 2013

    Remembering my mother

    I think about my mother every day. I know that the people who loved her and were loved by her think of her all the time, too. For those who were unable to attend her memorial service, I wanted to share some of the images, music, and words from that day.

    You can read the obituary that Phyllis and I wrote for our mother here and here. There were several news items on WIU's website and listservs and facebook pages of feminist organizations helped to spread the sad news.

    We held the memorial service at the WIU Multicultural Center. My mother had been an active supporter of the creation of a welcoming home for the Gwendolyn Brooks Cultural Center, Casa Latina, and the Women's Center. My mother and ten other women contributed towards the installation of a stained glass window in the library/lounge of the Women's Center, "Honoring our Mothers."

    Our dear family friends the Howds, Nulls, and Diehl-Earlies helped us to select the artwork and set up the space, along with my friend Parisa Parsa, who officiated the ceremony. Phyllis and I chose to have only roses for flowers, and we all worked together to create memory boards filled with pictures and to select pieces of my mother's artwork -- her collages and a few decoupaged items. We also displayed the photograph from the Women of Western Centennial Phographic Exhibit.

    At the welcome table we placed a small vase of roses, the programs, a photo of my mother with Phyllis and me, a guestbook and a box filled with rubber bracelets embossed with WWPD -- which stands for What Would Phyllis Do? This was a comment that so many people had made to us during the week following our death. Many of us, including Phyllis and I, felt lost without her.  We wanted to ask her advice on what to do.

    Of course, it's intended to be funny, too, because my mother was often very forceful in her advice-giving and could laugh at herself for this trait while still insisting that you listen to what she was telling you. Anyone who reads this and would like a bracelet, email me your address and I will send you one.

    Jim chose the opening and closing song -- they were both songs that my mother would interrupt conversation for, telling Jim to turn up the volume so we could all listen.  When we sat drinking wine and deciding on music for the program, Jim put this one on and we all sat quietly, the tears beginning to flow. We knew this was the one to start with.

    Rebekah DelRio - Llorando

    My Uncle Patrick then shared his Eulogy. We had asked him to share some memories about what our mother was like as a young woman -- where she came from. Patrick's memories and images truly captured just how cool my mother was.

    Phyllis read her Eulogy next, in which she captured our mother's thinking, her beliefs, and what she stood for personally and professionally. She chose "American Tune," to end, capturing the spirit of my mother and giving us all moment of reflection -- a lullaby to comfort us.

    Eva Cassidy - American Tune 

     Next I read my Eulogy, attempting to capture my mother's role in so many lives as a generous and caring source of strength, comfort and good advice.The song I chose to follow my words was "Nobody Does it Better," and yes, it was supposed to be funny. I also can't imagine who could possibly replace my mother's sage advice and ability to know how things should be done.

    Carly Simon -
    Nobody Does it Better

    Jim spoke extemporaneously, thanking everyone for coming and explaining that the music we had been listening to were all important to my mother and had a connection to my mother. They were songs that my mother loved, or songs that made us think of my mother. He expressed how much it means to see so many people who love her like we do.

    He then asked everyone to listen closely, and asked for the volume to be turned up, so the music could fill the room.

    At the Four Corners with Jim

    Philip Glass - Forgetting

    Parisa ended with a prayer, and we collected ourselves and shared tears and hugs over refreshments provided by our friends. 

    Jim's kids returned to the house and set out a beautiful reception for everyone to return to when we were ready to leave the memorial.

    It was a day filled with love and I thank all who drove miles to be there, who shared words and hugs, and who made donations in my mother's honor. 

    In total, approximately $2,000 was donated to both the McDonough District Hospital Hospice and the WIU Women's Center, and around $4,500 was donated to WIUM Tri-States Public Radio.

    My mother's name has been added to the Memorial wall at the hospital, next to my father's. We also received notification of many donations to the ALS Association or Les Turner ALS Foundation

    The faculty senate at WIU passed a resolution in mom's honor, and I recently learned that she had been named Professor Emeritus, which I had not realized. According to her colleague Janna Dietz, an undergraduate political science paper will be awarded in her name beginning this year and her friends and colleagues are working toward a named scholarship that will honor her teaching contributions. 

    It's an incredible comfort to see all of these memorial tributes honoring my mother and we are blessed to be surrounded by such love.  I hope that these remembrances and images are helpful for those who wish to feel part of that day of remembrance.

    Friday, April 5, 2013


    I've been thinking about the phrase, putting my life on hold

    My mother is in the end stages of ALS, aka Lou Gehrig's disease. It's as awful as you think it is. There was a time period where we thought it was ALS, then she was told it was Multiple Sclerosis, and we were like, crying tears of joy and relief. It's just MS, thank God! But then she got a third opinion. Doctors hesitate to issue death sentences and therefore hesitate to be definitive with this particular diagnosis, but it was confirmed to be ALS.

    My mother is hilarious. When something good happens to her these days -- like she got a big tax refund because she had thousands and thousands of dollars in deductions because of all of her medical expenses -- she smiles and delivers her favorite punchline, I'm so lucky

    Having an awful illness really does make you courageous. It's something people say, oh she's so courageous to battle this disease. If you're on the inside, part of you cynically thinks, well, what else is she going to do, give up and die? But then on the other hand, it's probably true that we human beings do have a lot of courage. The simple fact we don't give up and die proves it. So yes, my mother is courageous. 

    The frustrating thing of course is that I didn't need this stupid, awful illness to show me that -- I already knew that from the way she has always lived her life, a loud-mouthed, opinionated, brilliant thinker who challenged the utter stupidity of prejudice in countless ways as a mother, teacher and small-town activist. She raised two feminist daughters who believe that our identities, happiness, bodies and minds have value -- no small feat in our culture. 

    I'm 39, and I think about the fact that she finished her PhD after 40. Who does that? Who believes strongly enough in themselves to finish college *after* they have kids, then goes on to pursue a PhD in their 30s -- finishing just as her kids enter adolescence? Who has the self-confidence to agree to pause her tenure-track to apply for an interim Dean position, when the University President takes notice of what an outspoken and kick-ass leader she is among the faculty? Then, accepts the permanent position, making her the first woman Dean of the College of Arts and Sciences at Western Illinois University. Then negotiates an awesome golden parachute during a later regime change, securing a cozy retirement for herself and showing the rest of us "this is how it's done, ladies." 

    Who does that? My mom.

    So, I've put my life on hold to help care for her. I took a formal leave of absence from my work, after calculating that we can survive on Kevin's salary for a few months. I spend about equal amounts of time with my mother and her parter in Illinois, and with my family here in Cambridge, doing my best to keep up with the emotional, educational, financial, and therapeutic/medical needs of my children. Although traditionally I love my work, it's easy not to work when my mother's needs are so much greater. It's very, very hard to be away from my kids. I am grateful to have a husband who is a true life partner and keeps the homestead humming along while I'm away. I'm grateful that my sister and I can take turns so my mom and her loving, amazing partner Jim are less alone in this "end stage."

    Everything is on hold. The kids aren't doing activities because it's too crazy to keep up. I'm not working, and don't volunteer for the kids' school if I can avoid it. All I do is focus on taking care of my children and taking care of my mom.

    When I'm in Illinois, I spend a lot of time sitting with her while she sleeps. She sleeps in her power wheelchair because she can't reposition her body and her back begins to ache terribly if she tries to lie in bed. Her bed is adjustable, but her wheelchair is customized and has a lot more ways you can move. Among its cruel ironies, ALS paralyzes you but does not take away your sensations. You can think and feel as always. So if your foot has become twisted, you can't straighten it out. ALS has also robbed her of her ability to speak, so she makes noises and points - thankfully she can still move her arms - until you work out what is causing her pain and help her fix it. When you relieve her pain, she has to lie back, exhausted from the effort to communicate. 

    It's ok to leave her alone while she sleeps, but it scares me to think of her struggling, alone, unable to call for help. Jim takes incredible care of her, but he needs to be able to leave the house sometimes. She is utterly dependent on others despite holding onto every last ounce of independence that remains: her ability to make decisions, to type a message on her iPad, to drive her wheelchair, to lift a strap on one of her medical devices. Jim, my sister, and I have to be a team - supported by friends, my sister's husband and mine,  the hospice nurses and my mother's neurologist - in caring for my mother.

    I help her administer medications. She has some regular pills she takes, which we crush and dissolve in water and inject through her feeding tube. Feeding tubes sound invasive, but hers is just this little rubber hose with a nozzle on the end that goes into her belly, held in place by a plastic disc. I insert the end of another plastic tube into the nozzle, and formula flows through from a bag containing formula --  like what babies get but formulated for adults. She does feedings twice a day, napping and watching tv, or checking email while she is nourished. 

    I help her get her biPap machine on -- her arms have recently grown very tired, and when she tries to pull the headstraps back over her head, sometimes she has to stop to rest because it is so exhausting. I help get the back part, and she positions the nose piece. Although she prefers to have Jim help her with her most personal bodily needs, sometimes I help her to use the bathroom. They installed an expensive, un-insured piece of equipment in their bedroom and bathroom which is the primary reason she is not in a nursing home: an electric lift. With the push of a button, we lift her in her sling out of her wheelchair and slide the sling along a track in the ceiling so that she can then be lowered onto the toilet, or between her chair and bed. The only time she gets into bed is to have a sponge bath. It's too hard for her to sit up on the shower chair they were able to use for many months. 

    I also help her use these foam swabs to apply a medication inside her mouth, because she has thrush -- a yeast overgrowth caused by being immunocompromised and unable to swallow. It's also exacerbated by the nebulizer treatments she has to do to maximize her airways. I help her with the nebulizer and this thing called "the vest," which provides percussive rattling to her ribcage to loosen up secretions that build up because she cannot effectively cough.

    I give my mother morphine and ativan to help calm her body and make breathing feel like less of a struggle. My mother does not want to go onto a ventilator, and her particular course of illness is causing her diaphragm to be slowly paralyzed, which will eventually stop her breathing. Her lungs are healthy; she could get pneumonia from aspirating liquids, but more likely her perfectly healthy lungs will become nearly motionless. She will stop being able to pull oxygen into them and expel carbon dioxide from them. She will go into a deep sleep and then she will die, and I will miss her terribly.

    So, I have put my life on hold. Holding implies an uninvited pause -- an in-between space. Sometimes it feels like the opening scenes of The Graduate, where Dustin Hoffman is gliding along a people mover inside an airport -- in between terminals, in between college and real life, floating along, in between. Being on hold with health insurance companies and healthcare subcontractors has been a major activity of mine since my mother became unable to be understood on the phone, and it is sometimes frustrating. Some days feel like that, like when I'm sitting at home in Cambridge in my pajamas, wondering if I should be doing something different than watching reality tv and folding laundry. 

    Other times, when I make my mother laugh,
    or she types into her iPad something really helpful like, "I need you, but your family needs you too. Go home to them" -- I feel the other sense of hold. I feel held by her love, even as she grows weaker. And I know that my love -- and the love of her partner, my sister, and her dear friends -- are holding my mom. This cocoon that illness has woven for us blocks out the light, but it also sustains us.