Turning Toward Our Pain

 

The night before Hurricane Katrina happened, I journaled in Carl’s bedroom with the door closed. He sat in the other room, likely watching “West Wing” or some other show we were into at the time.

Earlier in the day, I’d seen news of the storm broadcast on television. Images of people lined up outside the Superdome haunted me. People of color filled those lines. Although I had witnessed some racism in the South, I had never before seen such a powerful symbol of inequity. I know I sound naïve right now. But the 24-year-old I was knew little of the systems that supported and perpetuated racism. These images nauseated me. I wrote to relieve myself.  I wrote in a fever.

I turned off the lights. I lit a candle because I had a sense that this moment was a liminal one. I needed to ritualize it. This was one of the few times in my life that I’ve written without being aware of myself writing. My hand moved a pen across paper. Words came. I have no memory of conceptualizing them.

I wrote about a scale of destruction rarely seen in modern memory. I wrote about an unimaginable loss of life. I wrote about the evisceration of land. When I finished writing, sobs rolled through me. I opened the door and walked into the room where Carl sat watching TV, and I wept.

I am not psychic. But that night I opened a space inside myself where I could touch my own grief. I was writing about other people, and my worst fears. I was also writing about myself. I was writing about a place I had been.

After my mother died, I lost the only homes I ever knew. I lost my first home, my mother.

I lost the home where she raised me.

Touching my own grief made it possible for me to touch the grief that was coming, the grief I knew countless people would soon experience. I could no longer deny my sorrow or theirs. I had to see sorrow as an unavoidable, necessary condition of our humanity.

________

When Katrina happened, I worked as a religion reporter in northern Louisiana, in a city whose homes, churches, and shelters quickly filled with evacuees. It felt like every reporter at the newspaper worked overtime after Katrina.

I visited multiple shelters, including a makeshift one in a Wal-Mart parking lot. I visited a hospital, where two women who went into labor during the evacuation gave birth. One woman, white, told me her house hadn’t flooded and that her family was fortunate. They would be okay, she said, noting the safety nets of her own race and education privilege.

The other, a woman of color, lost everything, including all the gifts she had received for a baby shower the week before. She looked dazed. Like she had just landed on another planet.

Three weeks later, Hurricane Rita happened. I worked during the hurricane, which could be felt in northern Louisiana.

As the storm made landfall, I drove limb-strewn roads to visit a church full of bikers who’d evacuated. I wrote about them. I did my best to stay dry.

August and September 2005 were the most traumatic months of my career. But I can remember little about that time, just as I can remember little about the immediate weeks following my mother’s death.

Sometimes I want to remember. Sometimes I want to forget.

________

The Presbytère in New Orleans has an exhibit right now called “Living with Hurricanes: Katrina and Beyond.” I visited last week.

If you are in New Orleans right now, or are going to be in the near future, you must visit this exhibit. It is among the most powerful museum experiences I have ever had, on par with the National Museum of African American History and Culture and the Birmingham Civil Rights Institute, but on a much smaller scale.

As I walked the exhibit’s rooms, watched footage of the storm surge, felt wind from fans blowing on my face, and looked at a mud-caked Teddy bear retrieved from a flooded home, tears welled. There was so much I did not remember. By retrieving and documenting collective memory, the museum brought me back to the emotional state I had worked so hard to forget.

By witnessing the pain of others, I returned to my own.

________

The story culture tells about grief often ends with redemption. A life restored. A city rebuilt on a pile of ashes.

I like to pretend I rebuilt my life after my mother died. I even used that word –– rebuilt –– in my last post.

The truth is that this story erases pain by creating a false narrative that goes like this: something lost, something gained. This story implies a gain cancels out a loss.

The truth is that I have lived two different lives. I have the life with a mother. I have the life without her. The after life does not replace the before life. It is not a substitute. It is a life I am grateful for and one I would trade in heartbeat if she could sit here next to me.

The New Orleans of 2017 is not the New Orleans of 2005. Yes, real estate prices have soared in the city. Yes, there are more restaurants now. Yes, people are vacationing there. I’m living proof of that phenomenon.

But the poverty is extreme, and we were panhandled more on this trip than we’ve ever been in all our time in New Orleans.

I gave $10 to a woman on the street even though every inch of my body suspected she would use that money for drugs. When she looked into my eyes and told me she was starving, I could not say “no.” I did something I almost never do. I opened my purse, then my wallet, and I handled her my crumpled bills. This seemed like the most honest thing I could do, to choose not to turn away.

Sometimes I can still be naive as the 24-year-old who moved to the Louisiana delta with two suitcases and a used Toyota. I can also be wiser than her, more self aware.

I know now that when I turn toward another’s pain, I am turning toward myself. I am recovering something of what I’ve lost.

 

Angel of Grief

I have the good fortune to spend a few weeks in New Orleans this summer. This city feels like home to me, even though I have never lived there. I am drawn to New Orleans for the same reason I am drawn to “Hamlet.” The entire city is a living, breathing memento mori.

Also, there’s another reason. And here it is: My mother dreamed of visiting New Orleans. But she died before she had a chance to make the trip.

One of the reasons why my mother loved New Orleans is because she loved Anne Rice. She wanted to tour St. Louis Cemetery No. I, site of the Vampire Lestat’s empty tomb. She wanted to take a riverboat cruise on the Mississippi River, the way the vampires did in the movie that came out when I was in middle school. She wanted to have her Tarot cards read in Jackson Square.

I moved to Louisiana two years after my mother died.

But I lived in the northern part of the state, a region populated by Baptists and Pentecostals. The fastest way to get to New Orleans was to drive through Mississippi, and even that was a four-hour drive.

Still, I went whenever I could. When I met Carl, he went with me. He keeps going back with me. If I wanted to, he would go every year.

We don’t do that. But each time we visit New Orleans, it feels like a new experience, like I am seeing the city for the first time. Like I am seeing it through my mother’s eyes.  I take none of this for granted. I know how much even one trip would have meant to her.

I keep going back because I can, and because she cannot.

_____

A few weeks ago, I started working on an essay about the iconography of grief. It’s a hard essay to write, one that forces me to confront truths I would prefer to ignore. It’s an essay where I need to reveal aspects of my life around which I feel tremendous shame. It’s an essay where I disclose something that embarrasses me deeply.

I have a draft of the essay completed. I know the essay’s bones. I know its themes and title. But there is too much exposition. Not enough scene. The ending does not work. No ending I have drafted works.

This is because I’m holding back. A part of the essay’s story terrifies me. And I am not as brave as I want to be.

Sometimes I think writing should be easier than it is. But writing is the hardest emotional work I have ever done. It demands honesty. If I am being dishonest, I know it. And the reader does to.  Right now, I’m not ready to be fully honest. So the essay is suffering.

When I get stuck in an essay like this one, I am full of negativity and self-doubt. I do not see all the progress I have made. I focus on what I have not yet done. I worry I will never finish.

Fortunately, research helps me get unstuck. New Orleans has become the focus of my research.  I know I will finish the essay there.

_____

Another idea that this essay engages is how grief can haunt our bodies.

My body is haunted by my mother’s illness and death. This haunting manifests in certain odd behaviors I enact with my body, as well as an autoimmune disease that binds me to her in a strange and familiar way.

In New Orleans, I feel at home because grief is inscribed on this city, on its body.

_____

After Hurricane Katrina, Day-Glo orange and yellow “X-codes” appeared on a majority of the city’s structures. The X-codes documented a FEMA crew’s search and rescue efforts. The number of people found alive or dead was written at the bottom of each X.

We saw the Xs when we drove down for the first Jazz Fest after the storm. I gasped when I saw them. For me, each X held an apocalyptic power. The symbol evidenced a biblical level of human suffering and endurance. Pain that could not be erased. Or so I thought.

Now many people have painted over their Xs. Or the houses that once bore them have been replaced.

Some artists and academics have documented the Xs and the stories they tell. A few Xs may even remain more than 10 years after the storm, a distant echo of its roar.

I plan to find them during my visit.

_____

I like to enter New Orleans from the west. Interstate 10 takes you past Lake Lawn Metairie Cemetery (known as simply as Metairie Cemetery), and you can see its marble tombs and mausoleums rising alongside the road.

I’ve toured other cemeteries in New Orleans, but have never visited Metairie Cemetery. As part of my research, I will visit the cemetery this summer. I’m drawn to the Angel of Grief, also known as the Weeping Angel, located in Chapman Hyams’ monument.

Hyams was a prominent New Orleans businessman, and the statue he commissioned is a copy of the 1894 sculpture by William Wetmore Story, the same sculpture that marks Story’s grave in Rome. Copies of the statue exist throughout the world, but Hyams’ statue is the only one in New Orleans.

Although it is not an official tourist site, Metairie’s Angel of Grief attracts visitors each year, some of whom have documented their journeys online.

For me, the statue is a pilgrimage site, and I suspect other visitors may agree.

I am compelled by the angel’s body stooped in grief. One arm bends beneath her forehead, while the other one hangs down. I read desperation in her posture. Animal vulnerability. I read myself into her pose.

When I learned my mother had died, I fell to the ground.

Sometimes, I think I’m still there.

But that is a half-truth. After my mother died, I rebuilt my life in Louisiana. Each time I visit, I am farther removed from my mother. I am farther removed from the person I was when I lost her.

This does not mean I am okay with the loss, just as the city of New Orleans is not okay that Hurricane Katrina happened.

It means I’ve learned to live around the loss, or in spite of it. But there’s a part of me that will never be the same.

In New Orleans, I do not have to hide.

Galatoires 2012.jpg

Me at my favorite NOLA restaurant Galatoire’s in 2012. Don’t let the Bourbon Street address fool you, Galatoire’s is a classy joint.

How to Be There for a Person in Crisis

I received some bad news the other day. When I told other people, they immediately focused on the positives, which irritated me. The positives, while not untrue, were also a kind of erasure.

God bless my mother-in-law, who after a near lifetime as a nurse, knows something about true empathy. Her response to the bad news? Two simple, significant words. Oh. No.

Because the bad news doesn’t involve me directly, I’m not going to share it here. What I’m more interested in is writing about how we, as human beings, show up for each other in the face of bad news. What do we do? What do we say? What’s so wrong with looking on the bright side?

Despite being an expert in living with loss, I am probably insensitive and lacking in empathy more often than I know. But having lived for awhile in the shadow of progressively bad news, I do know more about what I’m looking for in terms of empathy.

So let me share a few tips with you in the spirit of making our world a kinder, less irritating place for people experiencing a crisis.

Thanks for hearing me out 🙂

1. If a person shares a medical test result or procedure with you, do not say “Well that’s better than X.” Do not talk about a procedure that someone you know is having that might be worse in your mind. Remember, suffering is suffering is suffering. This is not a competition. There are no winners. Just a lot of sufferers.

2. Don’t disappear. That means responding to texts and responding to phone calls. Bad news is coming for all of us. What you do and say to another person experiencing a crisis prepares you for the one you are going to face. Silence is not golden. It’s infuriating.

3. I know what you’ve been told about clouds and silver linings, but have you ever stopped to think about the absurdity of this expression. Sadly, there is no silver in the sky. I wish I were wrong. How cool would it be if rain was silver? But this is real life with real pollution and real boring acid rain. Just let it be.

4. I know it’s tempting to say things like, “Let me know if you need anything.” I say shit like this all the time. But after receiving the bad news that will not be named, I was so out of it that I drove the wrong way down a one-way alley –– an alley I drive every day. People in crisis don’t know what they need. They are just trying to get through the day in one piece, without a car accident or other catastrophe. Take a page from my mother-in-law. Say “oh, no.”

5. Maybe you’re in the inner circle of someone who’s going through a rough time, and you want to be involved. This is good. This is noble. You should probably be deployed to train the people who can’t be bothered to respond to texts. But please be cool with not getting updates in real-time. People who are suffering have a bigger job to do than keeping you informed. Don’t pester them.

6. It’s best not to multitask when you’re on the phone with someone in a crisis. That person can hear you checking your e-mail or yelling at your kids. Yes, you are doing your best managing the million things you need to do in a given day. But the person on the other side can sense your distraction. And it feels rude.

7. Prayers. I know you have them. I know you want to share them. Maybe you even believe the only kind of prayer worth saying employs the word “Jesus.” Guess what? I’m a Jew. And Jesus-name prayers are irrelevant to me. So please save me and/or other non-Christians in crisis from having to school you on the difference between Christianity and all other religions. We have enough to do. Send thoughts. Send good vibes. Send non-deistic cards.

8. Anger. I bet you sensed some in that last item I just wrote. It’s there. It’s unavoidable. It’s human. Be a person who makes space for others to express their anger. Express your own. Just go ahead and scream right now. Doesn’t it feel good?

9. Shame. This is the shadow side of crisis. When our lives don’t go in the direction we want, shame flows alongside us like a lazy river, but less fun. When a person shares something with you that is difficult, that person risks shame. That person likely feels shame. Don’t add to the shame-pool by telling this person what to do, think, or believe. Don’t speculate on the causes of this crisis, or what alternative means might undo it. Have the courage to face vulnerability directly. It’s beautiful, isn’t it?

10. You’re probably really curious right now about this bad news that cannot be named. Stay curious. Don’t pry. People in crisis have a right to process and explore their feelings without managing yours. This isn’t a slight. This isn’t about you. Be okay with that.

Mother’s Day 2017

Every English doctoral program I applied to rejected me. This is not because I’m incapable of succeeding in a PhD program. I had the necessary GPA, GRE scores, writing samples, and recommendations. I had multiple publications in my discipline, well beyond what most M.A. student achieve. I did not have the right connections. I did not have the right pedigree, and these barriers were reinforced to me throughout my program discernment process.

I remember visiting Fordham University in August 2009.  That summer, my husband spent two weeks driving across the country with me, so that I could meet with faculty and students at PhD programs that caught my interest. Carl has more class privilege than I do. He knew exactly how the system worked, and he did for me what many parents do for their children. He became the champion of my college visits.

Fordham University was our last stop. There, I met a female graduate whose first question was, “Where did you go to school?”

This might seem like an innocent question, but in academia few questions of this nature are truly innocent. Unlike her, I had no Ivy League schools on my CV. I suspected her question had more to do with scoping out my pedigree than genuine interest. I’ve had so many experiences like this one in academia that I’ve stopped being generous in how I read another person’s interest in my “background.” In my head, I say the metta prayer before I respond. (May you be happy. May you be well.)

Another professor at Fordham refused to meet with me altogether. Actually, no faculty at the institution agreed to meet with me. I’m not sure why I persisted on visiting this university when it was so obviously a poor fit.

My mother was the first person who taught me I deserved to pursue my ambitions, no matter how far out they seemed. Perhaps I went to satisfy her. Perhaps I went because I have never been one to give up on myself.

The Ivy League grad student eventually determined she liked me enough to invite me to lunch at McDonalds, but I declined. The highlight of my visit was my husband showing up with donuts, then driving us out of the Bronx.

The following winter I began receiving rejection letters. The trail followed me into spring. I cried each morning when I woke up and before I went to sleep. I cried in the shower. I cried in the back room of the Writing Center where I worked. I cried on the phone to my friend Caleb, as I burned my dinner.

By May, I was so disillusioned by academia that I didn’t attend my M.A. graduation. I never received my hood. A few months later, Carl and I moved to Maryland and I found an adjunct job at a community college.

This job restored my faith in higher education. This job reconnected me to myself and to my mother. This job saved me.

***

I don’t like to think about who I would be now if I’d been accepted by even one of those PhD programs. I don’t want to think of myself as a person who actually cares about where another person has gone to school. I don’t want to be a person who confuses so-called pedigree with talent. I don’t want to be a person who confuses class privilege with ability.

I know I would not have an exceptionally rewarding teaching career in higher education had I pursued a PhD. This is because the PhD would have prepared me for a career at institutions that do not operate out of the same foundational mission of community colleges.

Community colleges offer open access to higher education for everyone. They educate people like me, people like my mother, people who have disabilities, chronic illnesses, and real financial struggles. Community colleges eliminate barriers, whereas my experience with four-year institutions has been the opposite.

A former English professor I once knew liked to talk about gatekeeping in academia. In other words, he pressured faculty to weed out students they perceived as not belonging in college.

My mother would have been one of those students who was weeded out. Her juvenile diabetes impacted her cognitive development. She was hospitalized during formative times in her secondary education. She never attended a four-year institution, and she was conditioned to believe that she was not smart enough for one.

Let me be the first person to tell you that my mother was the smartest person I have ever known. She’s been dead for 15 years, and I am still living off her wisdom. Through me, my students are still living off her wisdom too. But I’ll get to that later.

My mother attended community college after separating from my father. She failed multiple courses. She was leaving a bad marriage. She had a chronic illness and two babies at home. She had zero support. Failure, unfortunately, was the inevitable conclusion of her semester.

I am afraid she equated her failure to a lack of intelligence, not a lack of resources. I am afraid she believed she deserved to fail.

It took her ten years to go back. At this point, she was disabled from juvenile diabetes and awaiting an organ transplant. But she completed her degree. At this point, my sister and I were watching. She knew she couldn’t fail.

We didn’t attend her graduation. I don’t know if it was because she was too sick or ashamed. She certainly did not brag about attending community college, even though this decision radically transformed her life and mine.

Hers is the only degree I will ever hang in my office.

***

My teaching semester ended on Thursday. I hate goodbyes. I cried every day last week. A few times, I caught myself tearing up on the way into class and I’d have to take a sip of water to keep from losing it altogether. These were happy tears. These were exhausted tears, sad tears.

This week is always the hardest one in my professional life. It’s the week where my mother’s birthday and Mother’s Day collide. It’s the week when I have zero energy left and am running on pure adrenaline. It’s the week when an academic year reaches its natural conclusion, and goodbyes cannot be avoided.

In my creative writing class, we had readings this week. I listened to each of my students read from short stories, poems or essays they’d spent an entire semester crafting. At the end of each class, I read from my work.

I always worry about sharing my writing with students. My work is deeply vulnerable. My work reveals me as flawed, imperfect. The woman I am on the page is the woman I am in life –– and she is different.

The woman I am on the page dreams about eating her mother’s ashes. She ignores the pleas of a hungry animal because she cannot bear to be needed by anyone. She runs away from her family, her mother’s home. She runs toward her own life.

By revealing my own imperfection or vulnerability, I hope I give others permission to do the same. When I read about my mother, I bring her into my classroom in a way that’s visible. Her presence, while profound in my teaching, is often invisible to my students, the people who benefit most from the way she mothered me. In my classrooms, there are no weeds. Only flowers. My mother taught me how to see them.

***

This morning, my sixteenth Mother’s Day without my mother, I’ve awakened to streams of social media posts that I initially feared.

There are lists that begin with questions like, “How long has it been since you last called your mother?” (More than 15 years … can’t remember the sound of her voice.)

There are the mother-daughter pics. There are the mother-baby pics. There are young mother pics. There are old mother pics. I’ve yet to see a dying mother pic.

The dying mother, the dead mother, the absent mother are not celebrated on this day. Nor are the childless women, the motherless women.

Yesterday, a fellow motherless daughter announced that she’d take a break from social media today. I wish I could, but I am by nature an observer. Even as I am in pain, I am also curious about the source of that pain. I am curious about who I am as a result of this pain.

Just as I know I’d be a different person if I’d gotten into one of those doctoral programs, I know I’d be a different person if my mother hadn’t been sick, hadn’t died. I suspect I’d be a shallow person, the kind of person who might care about pedigree. I think I’d be a person the woman I am now would not like. I might be a person who is afraid of vulnerability, who sees it as a weakness.

I am glad I am a different person. I will never be glad my mother died.

This blog, which today is exactly one-year-old (happy birthday!) began on Mother’s Day 2016. It began as a place for me to document pain, to document what it means for a young woman to live without a mother, what it meant to live with a sick and disabled mother, and the thousand ways in which my dead mother has never truly left my life.

The thing about grief is that our dead stick around. They are with us even when we cannot see them, even when we wish them away. My mother is not an angel or a ghost. But she inhabits me like breath, like blood. This blog began as a way to free her and keep her close.

Thank you for reading.

Mom & Me

Sixteen Mother’s Days Without You

I don’t remember my first Mother’s Day without you. You died a month before, when cherry trees opened the season’s first blossoms. I remember unrepentant forsythia, dogwoods, and azaleas blooming along the street where you once lived. I remember standing in your living room and drawing the curtains closed. I remember I could not bear the sight of flowers or blue skies.

Surely the mundane and the beautiful could not exist in a world without you. Surely they would not go on. But they refused to disappear. I refused to stop wishing they would.

On my second Mother’s Day without you, I was 22. On this day, I graduated college.

I wore a dress I bought the day before, without you there to tell me whether the hot pink floral print was too much. I wore a matching pink lipstick. No one who looked at me that day would have thought mourner. I was good at hiding, good at pretending everything was normal. As if normalcy could exist on this day, as if normalcy could have been my aspiration.

After the ceremony, I shook Bill Clinton’s hand. (I remember nothing of his speech). Then there was a lunch with a few relatives. But I excused myself from dinner that evening. I cloistered myself in my apartment, ordered takeout. You certainly would not have approved of this behavior. The thing about grief is that it erases social graces, changes all our rules. People pleasing was the first rule I let go.

Still, I did everything I could to avoid thinking about you, which meant I thought about you constantly.

On my third Mother’s Day without you, I slept on the sofa of a woman I barely knew. I had nowhere to live & was starting a new job the next day, which that year was also your birthday. You would have been 51, but I didn’t buy a cake. No one celebrates a dead woman’s birthday. Not even me.

Four, five, six, seven, eight, nine, ten Mother’s Days without you. I don’t remember what I did on any single one of them. Eleven, twelve, and thirteen are foggy too, like the edges of a dream.

On my fourteenth Mother’s Day without you, my husband drove me to a house that was the same shade of storm-blue paint as our first house, the one where he and I lived after we married. This house we went to see had the same street number as our first house too. Weird, I thought.

What magic were you working from beyond the grave? I had this question even though I do not believe in magic or clear categories of afterlife. I know dead means gone. I know dead means never coming back.

Our realtor met us on the porch. Five minutes in, I knew this house was our house, the one where he and I could live, the place where I hoped your grandchild would soon live with us. We already had the nursery picked out. (Top of the stairs. Looks out over the backyard.)

We moved in the same weekend as yours and my father’s wedding anniversary, which also happens to be the same weekend as my in-laws’ wedding anniversary. But I have never known my father-in-law. Like you, he died too young. Still, I am searching for a photo of him, so that I might know him better.

The week we moved in, I placed a framed photo of you on the fireplace mantel. It’s your senior yearbook photo, the one where you are smiling through open lips and your hair is ironed straight.

But I could not bring your clothes –– the ones I saved –– into the room where your grandchild (I hoped) would one day sleep. After 14 years without you, they smelled of mold and rot.

So I did what I did with all your other clothes. I stuffed them in black trash bags bound for Goodwill. Then I went into the backyard and cried. I felt scared and certain at the same time, the way I always feel when I make a hard but necessary decision.

As much as I wanted you to exist in your shoes and sweaters and skirts, I knew you lived beyond them. You lived in me, the same way I once lived in you.

On my fifteenth Mother’s Day without you, I started this blog. You don’t know what that is, and I don’t know how to explain, other than to say these words are my heart living outside my body. These words are you living beyond me.

Writing has been the closest I have come to procreating. This is not because I do not want a child, but because my body has been hostile. You know something about that. And I wish we could talk about it, but dead means silent too.

Neither mother nor daughter, I’m feeling a little uncertain as I face my sixteenth Mother’s Day without you. What stake can I claim in this day? What bouquet or card or brunch date could possibly compare with the brilliance of your life? I am a woman who has no biological or adoptive claim to a child. Do I even matter on this day?

I suspect you’d answer “yes” to that last question. Just as I suspect my sixteenth Mother’s Day without you will be like every strange and ordinary day I’ve lived since you died. Exactly 5,513 days without you now. That’s 132,312 hours, or 7,938,720 minutes, or 476,323,200 seconds without you.

I have counted them all, which is how I also know we had exactly 7,720 days together. That’s 185,280 hours, or 11,116,800 minutes, or 667,009,000 seconds of existing in this world at the exact same time.

Seems like plenty. Seems like not enough.

My sixteenth Mother’s Day without you will be my 5,517th day without you. I have chosen to mark that day not on a calendar, but here, right now, on my heart blog, which belongs to you as much as all the construction paper cards I once made, all the burnt breakfast-in-bed toasts, all the poems with simplistic A-B-C-B rhyme schemes once belonged to you.

Today, by the way, is also your birthday. I know: I get the double whammy of your birthday and Mother’s Day in the same week (sometimes the same day!) every single year.

This morning, when you would have turned 64, I have no gift. But I will say what I said on every Mother’s Day of your life as a mother, what I wish I’d said in every moment we shared, all 667,009,00 of them. I will repeat the only words we ever needed, the best ones we could say.

Thank you. I love you. Thank you. I love you.

I will say these words as if you can hear them, as if you can whisper them right back to me.

 

 

 

 

 

 

 

 

 

You Should Frame This

Guest Post by Holly Aldrich

When she started hospice, my mother chose to go home rather than getting her care in the hospital. It sounded nicer, she said. Cozy. She was an optimist, even as her besieged body sunk her to the rude depths of these options. I was 27 and terrified and my mother had brain cancer. I was ready to throw myself at any shred of familiarity hiding in the bleak clinical narrative of her discharge paperwork. I convinced myself that we would be okay if we just went home. I tried to silence the insistent bleakness of words like malignant and terminal and palliative, because that is what she taught me to do.

I still had a lot to learn about the expert gaslighting of death, how it can use benign words and glossy pamphlets and fake smiles to lull you along. How tumors can grow slowly at first, and so can coups. But as mother and daughter, we soon found ourselves unsettled and bewildered, subjects of a strange new establishment. Home was no longer home.

Here is what I mean: Close your eyes and picture your bed. You know its shape and its place in your room, its small tactile histories. Feel your limbs weighting the mattress. Notice the particular scents of skin and sweat and sleep. Imagine the way your linens look when you wake in the morning, their customary jumble. See the way the light slants through your window. Now put on your most comfortable outfit. The touch of the fabric on your body, the way it knows you, how it outlines your place in the world, is perfect. Answer your everyday hunger and fill your mouth with your favorite food. The flavors dance. Delight in the textures, the pageant of spices and seasonings. Be there, in that sensory nest of bed and clothes and food.

Now rip the nest apart, piece by modest piece, and replace it with a clinical model pumped out by Big Med. When my mother came home, there was a huge sledge of a hospital bed with metal guardrails and a touchy remote for adjustments, stacks of adult diapers, a hoard of orange medicine bottles, and gowns with ties in the back. An oxygen tank hulked in the corner. For meals, there were big gray trays and children’s sippy cups. Staff began bustling through on their rounds, taking temperatures and scribbling notes about pain levels and possible UTIs.

I clung to the hope that none of it was real, like it was some peculiar game of Hospital. We would try out the accessories for a few days, buzz the bed up and down just for kicks, play nurse with the pills, and then my mother would become my mother again. She would ease up from the bed, pull on her customary jeans and tee shirt, and walk into the kitchen to make a cup of instant coffee and get back to normal. Her hair would grow back, her steroid-puffed limbs would smooth out, and the ugly tumors would slink from her skull and disappear. She would be 55, and healthy, and unremarkably alive. Everything would be fine.

That same day, I caught her gazing at me with the monk-like forbearance that was becoming so customary with her. Her eyes protruded from the steroids, but they weren’t manic. They were still calm and brown and warm. “It’s weird to think that I’ll never wear real clothes again,” she observed softly. And that was when I knew, with a sudden lurch in my stomach. None of this was a game. She was going to spend the rest of her life lying in a hospital bed, swaddled in diapers.

Until she died.

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Until she died, and I was left here. Without her. Without my tether to goodness and compassion and love, but somehow still here, floating in the world like a tiny piece of thread.

As much as I squirmed against this reality, I had no way of changing it. I was helpless to prevent the tumors from growing. But I knew from some fierce internal place of fundamental justice that I could not let her spend the rest of her life in the generic gowns from the hospital. No way in hell. The greenish one was the color of a swamp, and the other was coverall blue. Their pattern was essentially the textile equivalent of institutional linoleum floor tile, soured with the antiseptic smell of the hospital. They reminded me of a hostage huddling away from life. And that kind of apathy was simply not her.

My mother was an observer, a modern Hestia of the hearth minding the connection between home aesthetics and feelings. Color, texture, and form held meditative significance for her, especially in fabrics and furnishings.  When she was growing up in Chicago her father owned an antiques shop. Some of her fondest memories, she told me, were of accompanying him on trips to track down new items for resale. Weekend treasure hunts, she called them.

She sewed most of her own clothes in high school, and in later years she made my Halloween costume dreams come true with the same rickety seventies Singer. I was Tinkerbelle, Ariel, a medieval princess, and Laura Ingalls Wilder.  My junior high years were stereotypically anguished, but she got onboard. She gamely stitched getups for a bloody bride, a mad butcher, and a dead Victorian maidservant. As labor-intensive as they were for the busy mother of two kids with disabilities, those costumes were also evidence of impressive skill, a sharp eye for detail, and genuine maternal love. They proved her belief that all of my feelings and fancies should be honored.

Our 1920s Tudor bungalow was my mother’s sphere, and she always honored its harmonious soul. One of her only personal indulgences was a pricy subscription to American Bungalow magazine. Issues came in the mail four times a year, and she spent hours wandering the rooms on their pages. I can still picture her in the comfy armchair in our living room. Sometimes she got excited and called me over, pointing out the turn of a stately wooden bureau or the pattern of a tablecloth. These things mattered to her. They spoke to some sense of balance in her own soul.

Making her face death in tasteless hospital garments seemed like a needlessly cruel cosmic joke. It was beyond the fraying edges of my tolerance.

I also suspect that, layered beneath my understanding of my mother’s sensibilities, a lot of my attitude toward the hospital gowns had to do with shoes.

See, on the first day of hospice, I was wearing blue and white running shoes with rubberized treads and soft mesh construction. They were the latest in the long line of similar shoes. I have a disability called cerebral palsy, and I wear orthotic braces for support and range of motion. Knee-high plastic supports with Velcro straps and metal buckles, they amp my shoe size from 6 to 10, and any shoes I wear have to accommodate their width and the inch of foam lifts boosting my shorter left leg. I have become adept at honing in on comfort and durability. I track down the grandma shoes sitting plush and quiet in the back of the store, while pointy stiletto heels and chic flats preen on the display shelves. I am a master of practicality.

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And yet my shoe history is far from tragic. I can recall a long succession of well-loved footwear. I was the proud owner of baby pink high-tops with black trim, soft brown loafers with moccasin trim, classic saddle shoes, purple suede oxfords with a fun-to-rub embossed logo, and bright red leather pioneer-style boots. The boots were my personal favorite, and I felt invincible and sassy when I wore them.

All of those shoes were special to me not just because they were cute, but because they were an indication of my mother’s dedication to me, and what she knew I deserved. Finding those shoes was a monumental effort. Every new pair of orthotics was slightly, maddeningly, different than the last, and there was no easy way to find shoes to fit them.

So we pumped ourselves up for a trip to the shoe store, determined to find a good pair no matter how long it might take. We spent hours hunkering down in the aisles, wrestling with tongues and laces, taking wobbly test trips, squishing in lifts and taking them out, and remaining alert to any pressure or pinching.

Our trips were an anthropological study in the range of reactions to my braces, a constant and visible accessory in the outfitting of my life with a disability. Some salespeople were cheerily overzealous. Manufacturing caring expressions, they offered to help with adjusting my braces or wedging on a stubborn pair of shoes. They came from back rooms bearing measuring devices, shoe horns, and their own orthotic-friendly suggestions. Some pretended we didn’t exist, avoiding eye contact from the moment we walked through the door.

Other people wondered about my braces, too. Children stared and asked questions while their mothers vice-gripped their arms and answered with measured words. We either got strained smiles because it was “just so great” that we were there, or evil eyes for basically conducting grisly foot surgery next to the Keds.

Even staff sometimes asked us to move to a more secluded corner. This was for our own convenience, allegedly, but it was also a way to keep us hidden away. My mother always maintained that we were just fine where we were. When salespeople tentatively suggested that we might have better luck in stores carrying “special” shoes, she fired back that we wanted these shoes. I was entitled to the same shoes as everybody else, thank you very much.

She was talking about shoes, but she was also telling me something. You are important, she was saying, so take the time to find the things that feel like you. Remember, my daughter, that you are entitled to beauty and comfort every day. You deserve the same things as everybody else. Be persistent. Never be ashamed of who you are or the life that you live. If people have a problem with your disability, with your body, with you, then it is their problem, not yours. You do not have to hold their filth.

There is nothing wrong with you.

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My perspective on these messages evolved over the years, but they shifted sharply into focus against the bland backdrop of those hospital gowns. That evening, after my mother had fallen asleep, I started Googling. After rejecting overpriced patterned options and depressingly tasteful neutral tones, I stumbled upon a cheery Etsy shop owned by a geriatric nursing assistant.

I smiled when I saw the cute fabrics and perky colors of the gowns, already thinking fondly of the owner making them for her clients. Whoever she was, she was using her time and energy to stitch together swathes of brightness against banality. She was a seamstress warrior fighting the encroachments of bedpans, medicine spoons, and Miralax. I silently thanked her for her courageous compassion and added two gowns to my cart – one in purple paisley and one in jewel-toned floral.

When the gowns arrived in the mail, the tingle of happy anticipation that came with simply touching the lumpy white package was almost startling, a fairy tale magic stone glinting up from the grit of our days. I watched my mother’s face as I tore it open and pulled out the gowns.

For one wild moment, the magic stone worked. The cancer was a beanstalk we could scale and the fear of her death was a giant we could slay. That moment was gold. Her eyes lit up, and her mouth made a small O. The fabric was beautiful. She loved the color. She would feel so much better wearing them. The next day, when her assistant, Dolly, came to change her into her freshly-washed new gown, she started up all over again.

When she was finally clothed in her purple paisley, she was radiant. She kept touching the edges with her cancer-clumsy fingers and a little smile hitched the corner of her lips. And even though her face was swollen and shiny and her hair was nothing more than baby bird fuzz, she was somehow much more like herself again.

In that color, I saw her on our front porch nestling purple mums into a pot of dirt. I saw her on Christmas Eve, the rainbow lights of our tree twinkling off her favorite amethyst pendant. I saw her settling a plum-colored chenille pillow against the back of the sofa, then stepping back to admire her tidy living room. I saw her. She was still there. I could tell that she felt it, too.

The gowns did not change everything, of course. They did not stop the uncontrollable seizures or loss of motor control or pain. They did not keep her from weeping on bad days. They did not vanquish the ugly words and exhaustion and resentment of a family rapidly losing its center. Some days I was not a giant killer. I was nothing more than a daughter-shaped pile of ash and shit and memories, the Little Match Girl with her desperate flares against the dark.

But those flares mattered, so I kept up my orders from Etsy. She watched as I scrolled through the listings and then she made the final pick.

Every few weeks, a new gown or two came in the mail. Those days were not perfect, but they had at least a frisson of magic. The gowns assured a smile, a moment of appraisal, and a sense that life could still be exciting. Sometimes, in the middle of reading to her or feeding her a snack or asking how she was feeling, I caught her gazing at her gown with that same little smile. When her nurses came, she asked for their advice about what to wear next, and she loved telling the story of how her daughter had ordered the gowns especially for her. “Aren’t they beautiful?” she asked. “Holly got those for me.”

New gowns sometimes garnered embarrassingly sentimental praise, especially as her illness and medication turned her into someone softer, more emotionally porous. One particular gown was white with a pattern of flowers, butterflies, hearts, and birds. When she saw it, tears came to her eyes, and she couldn’t stop touching it. “This is like a work of art, Holly,” she breathed. “You should frame this so that you can keep it nice.” When I tried to convince her that I didn’t need to frame it because she was going to wear it, she couldn’t stop saying how lucky she was. I told her I was the lucky one, but I don’t think she believed me. It was a touching and bittersweet moment, but it was quickly sucked into the ocean of her illness. Later, after she was gone, it would resurface.

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If the beginning of hospice is a no-nonsense medical takeover, the end is a beloved house falling to ruin. It goes like this: One day you wake up and the air is filled with the stench of spoiled milk and bad meat because the refrigerator went bust overnight. Moldy water makes the floor slick. You should care, you should get up and clean, but all your energy has sapped away. And besides, you aren’t even hungry.

The next day you discover that the toilet clogged up and sewage flooded everywhere. It’s brown and stinking in the bathroom, but also in the living room. There is something wormy and acid green wiggling on the couch. Plump gray bugs crawl out of your favorite armchair, the place where you always used to read, but you could never concentrate on a book now.

Maybe you are a little bit hungry? There are still some things in the kitchen cabinets. A can of tomato soup with a Best Before date from 1998. A re-jarred quantity of dark green dried herbs with the word “Sage” on the cap in black Sharpie. The handwriting is yours, from before your letters got shaky and misshapen. An open box of multigrain crackers with the corner chewed off. In the shadows you see strange, obese rats with elephant skin. No, not really hungry at all.

And then the power goes out altogether. You are left in the dark, and everything smells rotten, and you can’t see or move. What if something happens? How will you charge your phone? Where is your phone, anyway, and could you even manage the technical map of buttons and screens? You don’t even know who you would call, or why, so it doesn’t matter. You just want to sleep.

And then someone touches you, so gently. Someone pulls soft fabric over your body. Someone takes your hand, and someone begins to read. From very far away, you hear a story about a girl and a pig and a spider.

You don’t really understand the words, but you are sure that the story is about love.

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Her last gown arrived just a few days before she died. She was starting to lose her appetite altogether and she spent more and more time sleeping. Talking was an effort. But she often rallied for Dolly and her nurses, as if she wanted to put all of her remaining energy toward being a good patient.

As usual, Dolly clucked over the new addition to her wardrobe. It was ocean blue, with an opulent array of Hawaiian hibiscus and vines. “I love it,” she said. “It makes me feel like I’m going on vacation.”

Aloha.

Maybe it was an innocent comment, but I suddenly remembered reading about how people nearing the end of life sometimes talk about going away on a trip, or needing to get ready to leave. A chill flickered up my spine even as I smiled and gripped her hand. “You’re right,” I said. “It does. You look gorgeous.” She smiled her trembly smile, the one that looked like a sideways J on the unparalyzed side of her face. “You know, Holly,” she said, “These gowns have made all the difference.” All I could do was protest dumbly and blink back the brine of tears.

She was the one who had made a difference for me. That old cliché. But of course she was.

She died a few days later, in the early morning hours of a Wednesday in late May. She was wearing her favorite lavender paisley gown. Her face in death was like a blurry photograph of a long-ago relative. She was a stranger until I looked closer, and then familiar features began to emerge. The slope of her nose. The curve of her eyelids. The shape of her lips. I kissed her and touched her face.

When her body was gone the nurse on duty said, “You did a great job, you know. You did the hardest job you will ever have to do.” I felt in my bones that she must be right. What could possibly be worse than watching the most loving and wonderful person in my life sicken and die?

The months after her death were barren, and I soon realized that their sterile drip was going to be worse than the months I had just survived. There was no more magic. It wasn’t that I was clinging to idealized nostalgia. I was just stuck. If there is a place where nothing shines, I was there. I woke up not knowing what to do without her presence in the world, and I longed for something – anything – to reconnect us. I wanted to make her toast with butter and jam and feed her Jell-O. I wanted to talk to her about what she was like in college. I wanted to bring her medicine. I wanted to read her Charlotte’s Web. I wanted to discuss her excrement, if it meant hearing her voice and seeing her chest rise and fall and touching her skin. I wanted to do anything to show her I cared. I just wanted her.

I could no longer order new gowns for her, but I kept the old ones. I just couldn’t bring myself to throw them away. In purples and pinks and blues and greens, there she was, smiling at me. “Hello, my little pumpernickel,” I heard her say. “I love you.”

A family friend is a quilter, so now the gowns are stitched together and folded at the foot of my childhood bed. Deceased Mother Quilt has never been on my wish list, let me be clear. In some ways, I can’t help but think of it as a shroud. Those gowns clothed my mother’s body when it was aching and messy and ridden with the cells that would eventually take her away from me. Two of them clothed her body after death. But those gowns also clothed her in dignity. She taught me from childhood about maintaining grace and gratitude even when fear seems easier.

With plastic and metal on my legs and this soft quilt on my bed, I am living our shared history. I am the barest thread unfurling in the space between us. Most days I still falter.

But I am still here, tending that space, because that is what she taught me to do.

houston

Holly Aldrich is a disability services professional working in higher education. She lives in Cambridge, Massachusetts with her amazing cat, Gracie. She is an introvert, a listener, and a disability rights advocate. Her mom, Meg Aldrich, died of brain cancer in 2014. She will always be her mother’s daughter. You can contact her at hmaldrich@gmail.com.

“You Should Frame This” first appeared at Entropy. 

Shame Me Never

Once a man stopped my mother and me as we walked from a grocery store to her parking spot.  “What’s your disability?” He asked, pointing to the handicap accessible parking permit hanging from her minivan’s rearview. I don’t remember what my mother said back to him, but it was probably something like “Mind your business.” We both knew he was calling her a liar in an indirect way. His question was an attempt to shame her. This is how people who lack a sense of power exert control. They make a weapon out of shame.

She was 39 when the handicapped permit arrived in our lives, just three years older than I am now. She had no visible wrinkles, no grey hair. She never left the house without bright pink lipstick and Jackie-O sunglasses. She wore red nail polish on her toes. She did not look like a woman who was dying, at least if you think a dying person cannot be young or able bodied or capable of running an errand with her daughter.

But she was dying. Just a year before the parking lot encounter, my mother nearly died from a diabetic insulin reaction in front of me. She would have died had my sister and I not rubbed cake icing on her gums and dialed 9-1-1. We kept her alive while the paramedics made their eternally long drive to our house. We were nine at the time. This was not the first time we saved her life, but that’s another story.

***

When my mother was sick, when she was dying, I never used those words. Sick. Dying. This is not because I was afraid or in denial. It is because I was ashamed. Shame tunneled to the core of my being. Shame policed my language. Shame erased my self esteem. If I ignored shame, I thought I could make it go away. Instead of confronting my shame, I hid in my bedroom and read books about the Holocaust. I read every book about the Holocaust that our tiny library owned. I craved stories of other people’s suffering. I needed to know I was not alone. I needed to know suffering could happen to anyone.

Indiscriminate suffering became the theme of my writing. I wrote stories about girls whose mothers died or disappeared. I wrote these stories until a middle school teacher pulled me into the hallway one day and asked me if I was a masochist. She did not give me time to answer before she told me to stop writing these stories. They were freaking her out. I didn’t stop. I just stopped showing this teacher what I wrote.

Years later one of these stories won a national award that helped me get scholarships for college. My sister saved the story for me. She has always believed in my writing. A few months ago, she found the story and called me to tell me my life’s work is to write novels. But I can’t write fiction anymore. I don’t know why, or what happened to me, only that my inability to write fiction is directly connected to my mother’s death. I wrote one short story the year after she died. It was about a girl who tried to kill herself but survived.

I was the suicidal girl.

I was the girl who did not die.

***

No matter what my mother ate or how many times she tested her blood sugar, she would have an insulin reaction. She could not control her disease. Her disease would not be controlled.

She felt at fault for this dynamic, and she was made to feel this way inside a culture whose dominant narrative of illness employs words like “battle” and “fight” to erase the reality that control is usually the first thing to go when a person is sick. My mother did not battle her disease. She lived it for 35 years. She endured organ damage, organ loss, organ rejection, surgeries, hospitalizations, fractured bones, daily needle injections and blood draws, depression, and anxiety.

When she went to sleep at night, she never knew if she’d wake up in the morning. She wore an insulin pump. It did not save her.

The night after she died, I slept in the bed where she’d taken her last breaths. Her insulin pump beeped in the middle of the night. I threw it across the room. I wanted to break it open. After it hit a wall, the pump fell onto the carpet, completely intact.

­­My mother didn’t get to live in a time when women spoke openly about how shame silenced and policed us. The expression “body shame” was not part of her lexicon. She bought into the myth that her disease could be cured, and she believed her organ transplant was a cure. When her organs rejected seven years after the surgery, she gave up hope. She accepted her death. I do not know if she felt anger or if she blamed herself. During the last month of her life, she was the saddest I had ever seen her. She was sad to the core of her being.

Only a few close friends knew about my mother’s transplant or her organ rejection. Shame kept me silent. Shame kept me from reaching out. Shame kept me isolated. Shame fed my own depression.

***

I’ve had to speak up about my own illness this week. I’ve had to tell a friend and mentor –– and leader on my campus –– that I need to take breaks in order to protect my body from immune system attack. This need may mean that I miss out on opportunities. This need means I am not “leaning in.” This need means that I have to say the word “can’t” even though I’ve been taught never to say this word.

I am an overachiever. I am good at what I do. I am ashamed of myself when I say the word “can’t.”

I feel lazy. I feel like a quitter. I feel like a person who wants to squeak by doing the minimum. I am none of these things, but that’s the power of the word “can’t.” It evokes suspicion and disdain, especially when women use this word to set boundaries. You see, when a woman sets a boundary, there is often a professional cost. We are either shamed by others for setting the boundary, or we shame ourselves.

I’ve decided to stop giving a shit about shame. I’ve decided to take away shame’s power to control me. “Can’t” is not a bad word. Sometimes it’s the word I need to say, the only one that can save me.