All posts by maginlasovgregg

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Waiting

My mother waited more than 1,000 days for her organ transplant. She went from 39 to 40 to 41 while she waited. On her hip, she wore a black pager that would beep when her organs “were ready.” This was the expression she used, as if her organs were a steak sitting in the oven, not quite pink enough to eat. I realize that’s a gross image, but it’s what occurs to me when I remember the absurdity that was, at the time, so very normal for all of us.

Her organs were ready on June 6, 1994, the tail-end of my seventh grade year. That summer, I listened to Nirvana nonstop and wore a flannel that belonged to my best male friend. I wore the flannel as we drove to the hospital – no school for me that day! – and the chorus of “Heart-Shaped Box” rattled around inside my head. Hey! Wait!

I barely understood the song. What was the “broken hymen of your Highness?” But Hey! Wait! I got that. Those two words meant exactly what I felt as we raced toward Baltimore.

They meant a thing and its opposite could be true at the same time. Hey! Wait! And I was stuck between a thing I wanted, which was also the very thing I didn’t want.

Hey! I did want my mother to have an organ transplant because she’d die without one.

Wait! What if she died in surgery or right after?

I’d seen “Steel Magnolias.” I knew the organ rejection drill. My mother’s match wasn’t perfect. Anything could happen. I could have a mother in the morning and be motherless by nightfall. This knowledge was the one true fact of my girlhood.

Hey! Wait! Don’t feel bad for me. I don’t feel bad for me.

________

A few weeks ago, I drove past the hospital where my mother had (and survived) her organ transplant. Each time I drive past this hospital, I go back to June 6, 1994, to Nirvana, to the flannel scented with Polo cologne, to the wild ambivalence of those moments.

Ambivalence. I used that word incorrectly for years. I used to think ambivalence meant not caring enough. Do you know most people use ambivalence incorrectly?

But “ambivalence” comes from two Latin words. The first, ambi, means “both or on both sides.” The second, valentia, means “strength.”

Put those words together and you have ambivalence. It means caring too much on either side of an issue, and being unable to choose because feelings are equal on both sides. You want and don’t want the same thing.

That’s where I was on the day of my mother’s organ transplant. That’s where I am now, nearly a year after my miscarriage and seven months into antibiotic treatment for late-stage Lyme disease.

If you asked me last summer whether I wanted a baby, I’d have screamed YES. I was so ready, so certain, so sure by the time I got pregnant, incidentally the first time I tried. At 36.

What great luck I had! How dumb my doctors had been! So glad I’d used birth control pills and insisted on condoms all those years! Phew.

The gynecologist who did my first ultrasound raved about my uterus. She used the word luscious. I did everything I could in that moment not to laugh until I peed the pants I was not wearing. But I also took pride in her comment. Despite how mysteriously ill I had been, despite the sudden autoimmune thyroid disease that depleted my once boundless energy, my body could do something right.

Until it couldn’t.

________

I did three things when I realized I was miscarrying. I apologized profusely to my husband, who was asleep because it was 1:19 a.m. He did not think I had anything to apologize for and did his best to console me in his half-sleep, half-shock state.

But my body had failed in the worst way it could fail. And I was guilty, because it was my uncontrollable body that had rejected a pregnancy we both wanted. So I said I’m sorry over and over again, until I finally went downstairs and did the second thing. I made myself a cup of peppermint tea because that was all I could do to keep myself from screaming.

The third thing I did was call my mother-in-law once the sun came up. I told her my miscarriage made me realize how very much I wanted to be a mother. No more second guessing. No more doubt.

Why wouldn’t I want a child? I had an incredible mother who mothered me in lasting ways that allow me to be generous and patient and kind. My students even tell me I’d be a great mother. I know I should hear that comment as sexist, but I take it as a compliment. Because they’re right. I have all the qualities needed for masterful mothering. Anyone can see it.

And yet, there’s another side of the choice.

There’s the body that doesn’t seem to work the way it used to.

There’s seven months of antibiotics and no end in sight and arthritis in my hands.

There’s relapse.

There’s the 30 pills I take per day.

There’s my thirty-seventh birthday that passed in February.

There’s thirty-eight on the horizon.

There’s the choice to wait.

The thing about waiting is that it’s the closest thing we have to purgatory on earth. Torture, and not quite torture. When we’re waiting, we want the waiting to be over, and we focus our attention on an end. We believe the end will be better than the waiting. But after an end is reached, another waiting will come, and the next waiting after that. And on and on.

Our lives are thousands of days of waitings.

And yet, I’ve chosen to wait. I’ve chosen to be ambivalent. I’ve chosen to say the word I now understand at the core of my heart: ambivalence.

I take the word the apart.  Let it enter me. Leave me.

________

I’ve told all my doctors not to discuss pregnancy with me, and I’ve found an endocrinologist who will treat me during pregnancy with the medications I need, but that no other endocrinologist will prescribe in pregnancy. Incidentally, he is the endocrinologist who treated my mother and recommended her for an organ transplant.

The day I sat across from him at his desk, I was all grown up. A college professor. A woman with health insurance and a home of her own. He didn’t remember me as the little girl who used to wait in his lobby or run down the hallways.

He remembered my mother. Of course he did. How could anyone forget her? I saw him on June 6, 2018, a detail that was coincidence but felt like magic.

I am happy as a childless woman just as I could be happy as a mother. How fortunate I am that happiness awaits me on either side of my most difficult choice. Hey! Wait!  Two opposite things ring true. Like on the day of my mother’s organ transplant. Like right this minute.

 

A Course in Healing

1. No one wants to be here, and here we are. Exactly where we’re required to be. So welcome to an experience you never asked for. Welcome to an experience you did not choose. Welcome to “A Course in Healing.” I’m glad you’re here.

2. By the way, the word “glad” (above) is an example of the feigned positivity that will become a norm of your grief experience. Get excited. That was example No. 2.

3. There are no clear learning outcomes for this course, although learning will soon be projected onto your experience. “What have you learned?” People will ask in clipped, expectant tones.

4. “Misfortune is a great teacher,” they will say, and you will learn how to nod wordlessly.

5. It is considered bad form to respond, “I have learned that in the face of my discomfort, I am expected to comfort other people.”

6. It is equally bad form to say, “I have learned that when people ask me how I’m doing, I must say something like okay or fine because those are the only acceptable responses.

7. Do not say, “Sometimes I sit in a dark garage and weep.” Do not say, “I configure my day around ‘Growing Pains’ reruns.”

8. In short, during “A Course in Healing” you will learn how to be a good faker. Some people will even say faking is a key ingredient to your healing. We will cover this dynamic during our unit on Erasure.

9. It’s okay to wonder why the expression of vulnerability upsets the relationship non-grieving people have with permanence and/or the performance of happiness.

10. You may have figured out by now that “A Course in Healing,” should be renamed as “A Course in Lying.” I have brought this suggestion to the Curriculum Committee, and its chair reminds me that “lying” doesn’t resonate, but “healing” has cache. Healing is rainbows and holidays and sparkly love magic. Grief is blech.

11. Now you might be wondering: “Will there be any tests?”

12. Each moment of your life is a test, and there are no grades. Only choices and questions. You pass no matter what choices you make. You pass even if you choose to eat potato chips for every meal, even if you listen to that one Jeff Buckley song until the CD player skips.

13. There is no extra credit. At the end of this course, you will not be a better person. You will be a different person. You might be a person who can tangle with competing truths. You might be better at letting go of appearances, other people’s expectations, your own miscalculated dreams.

14. If I do my job well, I will impress upon you that there is no bright side where your pain fizzles out forever. There are black holes of sorrow. There is dark matter we live inside of and between. There are moments when we wish to disappear forever, if only to stop the pain.

15. There are the people we would have been without our losses, and there are the people we become because of everything we have lost.

16. There are the futures we claim.

17. There are the dreams we rewrite.

18. Take me as a case study: Before my mother died I kept a diary. My college roommate gave it to me one Hanukah. She wrote a quote from Oscar Wilde inside the front cover. “I never travel without my diary. One should always have something sensational to read on the train.”

19. And that is what I thought life was back then –– sensation for the taking. A nonstop adventure romp. The long weekend between adolescence and middle age.

20. I was twenty and twenty-one in the last years of my mother’s life, and I wrote sad poetry in that journal. And I wrote about boys I thought I loved, who maybe loved me, who didn’t love me as much as I wanted them to love me.

21. And I wasted my time with these boys. Wasted my worrying. And then my mother died, and I lost interest in boys. I ignored them, avoided them, until I fell hard for a man I never expected to meet. He lived an ocean away. But I wrote to him every day the way I’d once written to my mother. And he wrote back to me.

22. “Hi Sweetie,” his e-mails began. It was the same cheerful salutation my mother had used daily with me. In my first year without her, this man was sunshine pouring down after a night where I believed I’d never see light again.

23. He was the first proxy I made for my dead mother, and he would not be the last.

24. Even though it was not his job, he championed me the way my mother had. He made a big deal of my birthdays. He said, “I love you” without choking. He mailed me mix CDs with heart wrenching songs I’d never heard.

25. He knew where I was at night and in the morning.

26. When we were together, he held me until I fell asleep, the same way my mother had held me long ago.

27. But –– but –– a lover and a mother are not the same thing. A lover cannot be a mother. Such a burden will crush the most sincere loves.

28. One night we both cried, and I boarded a plane alone. I can still hear the sound of my suitcase scraping the pavement on the way to the airport. I thought I was leaving him temporarily. But it turned out that my leaving was permanent. I just didn’t know how to say that yet.

29. I didn’t want to leave this man, and I had to leave this man.

30. I’d never find my mother in another person. If I wasn’t careful, my search for her would destroy every chance at love that came my way.

31. I could never save her.

32. I could only save myself.

33. When I walked away from a man I loved, I walked toward a life I couldn’t imagine, a life he could not walk for me no matter how much he wanted to. I had to walk alone, toward a motherless future awaiting me.

34. My mother taught me there are no escapes.

35. My mother taught me I could withstand being sucked back into the long, lightless night.

36. Her wisdom lived beyond her, lived:

  • in the cat I rescued a few months later, a stray I didn’t want but took, lived
  • in the man I married, and a home where I made my own light, lived
  • in the stairwell of a college, where I sat one afternoon with a student who told me about a man who hurt her.

37. When the student finished her story, I told her a story about my mother.

38. I told her courage means walking toward our worst fears, walking toward the truths we don’t want to say.

39. Then we both walked toward the counseling center.

40. Each time I listen to another person’s hard story, each time I tell my own hard story, I carve another notch on the shrine I built for my mother, a shrine called memory, a shrine called love.

41. Healing is a word I avoid. I’d rather be changed, remade, reborn.

42. I’d rather hold a broken heart in my upturned palm, marvel at a heart that beats in spite of its cracks.

43. In this course, we will be who we are. We will be everything we are afraid to say. We will be the whole story of our pain.

 

How Well Do You Know Your Mother!

Mother’s full name? Judy LaSov

You’re in jail & you call her, what does she say? Do not know phone number. Do not know how to reach dead mother. Perhaps, a Ouija Board or psychic medium?  If I do reach her, jail will not be an essential element of our conversation. In fact, jail will not come up at all.

What is she doing right now? Good question. Some people say she’s watching me “from above.” But I have a different story of afterlife. It goes like this:

On the day a stranger cremated my mother, the molecules of her body ascended air. Flowers and trees inhaled her, absorbed her. She became sky, cloud, rain, earth.

Now my mother is busy being the atmosphere of everything. Like all mothers everywhere.

What kind of dressing does she eat on her salad? Has not eaten salad in 17 years. Dialysis diet restricted. Salad is a touchy subject, by the way. Because she was a Type-1 diabetic and anorexic & bulimic, which means food = super complicated. Avoided salad dressing in favor of sour but almost calorie-free balsamic vinegar.

 Name something she hates: Life with a chronic illness. Being dead. Sexism. Seersucker suits. Lace curtains.

 What does she like to drink? Coca-Cola. During an insulin reaction only. However, be forewarned: She might scream like the cup crawls with insects or poison.

 Favorite music to listen to? The Beatles, The Beach Boys, Wham!, Karen Carpenter, and especially “Close to You,” which she sang off key to her daughters  until they knew every word of that song.

 What is her nickname for you? May. For the first syllable of my name, for the month she was born, the month when roses and azaleas bloom, when flowers paint the land in Technicolor and we forget how hard winter was.

What is something she collects? Teapots, which her young daughters did not have the foresight to save when she died. So now their mother’s beloved collection sits in the homes of strangers or at the grimy bottom of a landfill. She would have wanted it this way. She would have wanted to free her daughters from the weight of a mother’s unfulfilled aspirations.

What would she eat every day if she could? Here’s the shitty thing about getting diagnosed with Type-1 diabetes in 1966: People made fun of her. Her family teased her. People said, “Mmmm. I’m eating this ice cream cone, and you can’t have any –– hahaha!” As if that were funny. As if, as a teenager, she wouldn’t learn how to binge and purge, wouldn’t learn the satisfying urgency and release of an addiction that trailed her though the rest of her life.

So, dear silly meme, the answer to this question is simple: She’d eat everything if she could.

What is her favorite color? Ripe cherry red, a color that makes her grown daughter shudder.

 What would she never wear? White shorts. They are an abomination unto the Lord.

What is her favorite sports team? Hmmm. She tried going to a baseball game once. Her daughters openly mocked the son of her boss, then disappeared for hours to do secret twin things. This was the end of attempting any family interest in sports.

What could she spend all day doing? Talking on the phone to all her cousins and friends while her introvert daughter hid in a bedroom and wondered how anyone could laugh so loud all the time.

What’s her favorite candy? Sometimes seen sneaking a box of Good & Plenty in bed while watching “The Golden Girls” and smiling like she believed she might live to be that old.

How many brothers & sisters does she have/had? Eldest brother, Bernard, died at four-and-a-half months, and proceeded her in death. Eldest sister died last September. Another brother still living.

 Favorite alcoholic drink? Admitted to getting drunk only once when she was “getting up the nerve” to have sex with a boyfriend who turned out to be the father of her children. This story, told as a cautionary tale to adolescent daughters, had zero cautionary effect.
Repost as How Well Do You Know Your Mother!

Sixty Five

Two weeks before you died, we curled up in your bed and watched “The Golden Girls.” On the TV across from us, four women huddled around a kitchen table, nibbled cheesecake and laughed fake theatrical laughs. I was too young to lose you, and old enough to sense your going. We never said death, dying, dead. If we spoke them, we’d make them true. Denial can be a life preserver. We preserved hope.

The summer before you died, we walked BWI together, and you whispered something shocking in my ear. At first, I didn’t understand. Travelers crushed around us. And I’ve never been good at walking and talking. You stopped moving. You put your arm around me. You said, “My pancreas rejected. It’s okay. I can live without a pancreas.”

I nodded, like I believed you. We walked toward baggage claim. My vision blurred. The airport looked like something under water.

I’d come home to visit the deathbed of your stepfather, the man I knew as a grandfather. I came home to play Sinatra while he took his last breaths. I came home to whisper it was okay to let go. I came home to bury him in Newark beside his first wife.

You couldn’t get out of bed the day of the funeral. We pretended you were just tired.

A month after cremating you, I marked his first yartzheit.

____

Your ashes. My God. Do you know what it is to be 21 and hear a package thump on the front stoop, make the sound of a body hitting cement? Do you know what it is to see the address stamped on the box and know your mother is inside that box?

Only, your mother is not merely your mother. She is your first god, first home, your mirror, your map, the blueprint of everything.

And then, one day, your mother is in a black box inside a cardboard box with a crematorium address stamped on the lid. Your mother is dust and splintered bones and sooty grit, a shadow you can never touch.

You remember denial is a life preserver.

Then you carry the box to a bedroom that still smells like your mother. You ignore a hairbrush holding remnants of hair that never went grey. You open a dresser drawer and tuck the box beneath a stack of sweaters. There, a burial.

____

Seventeen years later, you write before work, at night. Pronouns get confused. You are you. She is you. We are she, her, and me. You do all the mixed-up pronoun things you tell your students not to do. You tangle, untangle, tangle again. You make up for lost time. Grief makes a stern knot you don’t want to untie.

____

You read shitty self help books that say there’s a finish line for grief, say grieving too long is pathological, say sorrow and love are not proportional. You stop reading these books because they make you suspicious. You are not a pathology. You are devoted.

At a lecture, a famous writer talks about desire. Desire is the engine of literature, he says. What we want never adds up to what we have. All books, he says, are actually about crushes.

Okay.

So you have a crush on your dead mother. There are worse things. But what would it mean to stop desiring her? Would that make it okay that she is dead?

Who would you be if you didn’t want her alive?

____

You move through your twenties and thirties without her. You are effective, efficient at steering through life without a mother. You have a solid husband, a good mother-in-law, Google. You can find an answer to any question.

And yet, you delay childbearing because you are afraid to mother without her. Your friends have mothers who watch their grandchildren a few times a week. Still, your friends complain about their mothers to you, and you nod. Because what can you say?

You wonder who you will call in a childcare pinch.

Your sister hires a full-time nanny, manages to juggle a high demand job with graduate school, with two children under the age of five and one on the way.

A nephew has your mother’s eyes and all her facial expressions. A niece has her “whatever” attitude.

One day, your nephew asks to see pictures of your mother. He asks for these photos the same way he asks for Harry Potter Legos — he must have them. But there’s not enough time to show him everything, and you pull out a few photos you know he’s already seen.

You recognize the hunger in his eyes, the downturn of his shoulders when you cannot fulfill his desire to know her.

Still, a ghost grandmother is better than no grandmother at all.

____

You wish you had something wise or prophetic to say on the second week of May when her birthday and Mother’s Day intersect. For so many years, you say nothing, as if silence can erase her absence.

You graduate college on your second Mother’s Day without her.

You mark major milestones on her birthday, May 10: first day of your first job after college, the day you meet your husband, the day you decide to date him, the day he and you buy your first house together.

You mark all the birthdays she didn’t get: 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65.

And all the birthdays she didn’t see you mark: 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37.

And all the events in her grandchildren’s lives that she didn’t see: brit milah, Hebrew namings, Kindergarten graduation, first steps, first words, first Siddur.

As if by marking, you can somehow take something back. Not her life. But the right to tell the story of your desire. Her desire.

Desire, from the Latin, desiderare, means “long for” and “wish for” and derives from the sadly out of vogue expression “await what the stars will bring.”

She used to sing a song of desire to you, a Karen Carpenter song about dreams coming true, stardust, angels.

When you mark her birthday, you remember this song. You remember the gift each line intones, the burden.

She no longer trails your dreams. But nothing stays gone forever.

She finds her way back to you again and again, always in a different form than what you expected.

You watch, wait, listen.

On her birthday, she used to blow out candles, then tell you to make a silent wish.

You can’t say your wish out loud, she said, because then it won’t come true.

Once you gave her a journal and asked her to write down all her desires. She left every page blank.

You fill in the pages for her. You become every wish ever wanted, every wish she never saw come true.

My Body Doesn’t Lie

Living with late stage Lyme disease is like being on bad drugs. I hear phantom sounds, smell phantom scents, get paranoid: Everyone hates me. Everyone thinks I’m weird or stupid. People say words to me. I hear them. I don’t always understand.

It’s excruciating to be a writer and to hear words floating by, and to be unable to grasp them.

In a meeting this week I said, “I’m having trouble following the thread,” which is a poetic way of saying, “I have no clue what all of you are talking about.” And I thought I saw someone in the room make a suck-it-up-stop-complaining-face at me. I don’t know if I imagined this, or if it’s part of my Lyme paranoia, but I felt shamed and embarrassed. Like I was being weird again & weirding people out. Like I should minimize my own needs for the sake of other people’s comfort.

There is another story of who I am.

That other story goes like this: I am a good friend and a patient teacher. I am smart and strong. If you tell me something hard, I will listen to you. I will protect your confidence. I will help you. I will not judge you or manipulate you with fear or anger.

Even on my bad days, I get a ton done. I support my students because they are everything to me. I take pride in the fact that I’m an overachiever, even as I recognize the multiple problems in that sense of pride. I don’t want to tie my self worth to my achievements, and I have been conditioned to tie self worth to achievements.

Lyme disease took away friendships, child bearing years, energy, hope, trust.

But it didn’t take away my ambition.

Ambition kept me going. Ambition made me fight hard for myself.

________

In December, I started one course of long-term tetracycline antibiotics. My primary care physician added another antibiotic at the end of that month, and I improved drastically. My Lyme specialist added a third antibiotic in February, and this is standard: late stage Lyme disease requires treatment from separate classes of antibiotics. Nothing has helped me more than multiple antibiotics and eliminating gluten from my diet.

Seeing myself respond to treatment is reassuring and counters the effects of gaslighting I experienced in other medical settings, where doctors dismissed and disbelieved my symptoms.

And I can’t stop talking about this shift, which I suspect is starting to annoy to some of my friends. Because I was silenced for so long, I have become the person who can’t stop telling the same chaotic story over and over again. I can’t stop talking about myself.

My story goes something like this: When my symptoms first presented in July 2013. I went to the emergency room, and I was not seen that night even though I could not stop vomiting. I never vomit, like not even when I have a fever. I kept saying something was desperately wrong, but a nurse said I probably just had “a little virus” (in the middle of July).

Staff placed me in a hallway so I would not distress other patients. I fell asleep. I stopped vomiting. I went home, and felt like Hell for weeks. A blood test showed irregularly shaped red blood cells, which I now know is a telltale symptom of my most pervasive Lyme co-infection: Bartonella.

I took four lessons away from this experience.

Lesson 1: Women who vomit uncontrollably are not sexy. We must, therefore, be hidden, ignored.

Lesson 2: Authority figures who dismissed my illness made me question my sanity, my sense of reality. I believed them at my peril. I believed their myth of okayness because I wanted to be okay, and on the outside I looked okay.

Lesson 3: My body doesn’t lie. I’m learning to listen to what my body needs to tell me. My body can be trusted.

Lesson 4: There are excellent doctors & there are super shitty doctors. Do not excuse or minimize the behavior of a super shitty doctor. Believe you can do better. Believe you deserve better, and you will find better. Get out of that practice, and don’t look back.

________

When I wake up and run three miles, when I vacuum my house after working all day, I know a somatic shift has happened. I know I can trust my perceptions of reality. My narrative is valid.

Right now, I am having more good days than bad days. I can grade a big stack of essays, and I can focus my full attention on my students. They get my best energy. And this is why I meditate regularly. I need to bring attention and compassion into my classrooms. My students deserve my best energy. They deserve patience and compassion and generosity.

But, when classes are over, my brain is fried. I am frazzled.

If I rest, I bounce back.

If I don’t rest, my brain melts down.

Resting isn’t always an option. I work in the real-world, and I care about doing my job well.

So I’m learning how to “rest” inside the jumble. I’m learning how to bring my meditation practice into every area of my life. And this is another story that is true about me, a story of resilience and adaptation.

One of my friends is a Yoga instructor, and he has been kind enough to practice Yoga with me each week. He gives me instructions, and he knows I don’t always understand what he’s saying. He knows when I’m not following the thread, and he supports me until I figure it out. He never makes a mean face or rolls his eyes or mutters something rude. He doesn’t gossip about me.  Sometimes he has to stop his practice in order to help me, and each time he reassures me that it’s okay for me to not know what’s going on. He trusts that I’ll figure it out, and I figure it out.

This is what compassion looks like.

In order to have faith in ourselves, we need others to place faith in us.

________

This week, I had a terrible day. Most people around me did not know I was suffering. My friend Anne knew, and she helped me. I made it home, and Carl was there, and he helped me. And my amazing Mayo clinic trained Lyme doctor saw this coming. He had already shifted my meds, so that as soon as I needed them, I had them. Carl ordered dinner, and we ate. I took my meds. We watched Netflix. I fell asleep. And the next day, I was okay. I bounced back.

Writing those words terrifies me, and makes me uncomfortable. The image of a person “bouncing back” is inherently ableist. I am not cured or recovered. I will always have this disease, and it sucks. When I write, “I bounced back,” what I’m saying is that my treatment is working, and I am functional. What I’m saying is that setbacks are not permanent. What I’m saying is that recovery is also impermanent.

And there I go again, repeating the same story.

I’ll stop telling this story once medical communities, once society, starts listening to women, starts listening to the stories we tell about our bodies.

I’ll keep telling this story because it matters, because it needs to be told.

A Season of Loss

We’ve had so much going on this year, and I forgot to buy a yartzheit candle to mark the seventeenth anniversary of my mother’s death. This weekend initiates a trifecta of death anniversaries: my mother (April 7), her mother (April 8), and a beloved aunt (April 9).

I have marked these anniversaries back-to-back for years, often lighting candles in my kitchen. For me, marking death in early April can feel incongruous, an affront to the landscape’s perpetual message of rebirth.

This morning, because our past year has been so complicated, I also forgot that today was my mother’s yartzheit. I remembered only after I opened the kitchen door to let our dogs in from the yard. Nature reminded me. Each time I look at a cherry blossom or daffodil, I remember where I was on a Sunday morning seventeen years ago. I go back to the moment before I learned the news of my mother’s death, when I sat on a sofa while the walls turned salt-lamp pink, then swirled around me. I go back to the the moment after I confirmed the news, when I fell to the floor and opened my mouth to scream but no sound came out. My primary experience was one of silence, which now strikes me as an appropriate metaphor for death and grief.

In the past seventeen years I have mourned my mother, I have resisted cultural silences imposed on the grieving. I have resisted avoiding the topic of death. I have resisted language that denies the reality of death and grief. This blog is one form of resistance.

This week, I’ve thought frequently about how hard it was for me to go back to school after I lost my mother, how much pressure I felt to perform normalcy and perfection. I thought about how I learned to hide my sorrow, and how alien I felt in rooms full of 21-year-olds whose parents were still alive, and often paying their children’s bills. At 21, I had no such resources. I was on my own. To this day, I do not know how I graduated from college, only that I did – on Mother’s Day 2003. Some people tell me I’m strong or brave. But I don’t think finishing college was a heroic act. In a period of tremendous instability, the structure of an academic year gave me stability. I clung to stability. If anything, I feared further change. I avoided uncertainty.

After my graduation ceremony, I went out to lunch with visiting relatives but refused to go out to dinner. Instead, I stayed in my apartment with my sister and boyfriend. We ordered takeout. My graduation was not a celebration, and celebration felt fraudulent. My college graduation was the first major milestone I marked without a mother, and I marked this milestone in public, surrounded by jubilant people, on a Hallmark holiday that forefronts motherhood.

That day, I needed privacy. I needed to grieve alone with my sister. The next week, we’d “celebrate” her graduation. I cannot bear to look at photos from either of these events. I had such a sweet boyfriend at the time, and he stayed with me even though it was hard, and we were both too young to understand the emotional pressures bearing down on us. In the graduation photos, my boyfriend stands next to me. He holds me in a protective embrace. But my eyes are vacant, cold, dead.

I am barely there. I do not want to be there.

Something that bonds Carl and me is that we both lost parents young. We both lost the parents with whom we shared a gender identity – my mother, his father. We both walked across commencement stages, received diplomas, fell in love, began careers, bought homes without those parents present. At our wedding ten years ago, we claimed these losses in a candle-lighting ritual. We acknowledged how light and darkness exist side-by-side as natural elements of human experience, our experience. In our family, grief swims beneath each experience of joy.

This morning, because I could not find a yartzheit candle, I walked from our kitchen to our attic, which we’ve recently remodeled into a meditation/Yoga space and writing studio. I sat on my meditation cushion and lit the only candle we have, a rainbow chakra candle I gave Carl for Christmas. Then I carried the candle through our dark house and placed it on the stove, beside a plate of matzah brei I’d made for Carl’s breakfast. A spoon holder that once belonged to my mother sat behind the candle; it’s one of the few objects I have left from her house.

In our kitchen, the makeshift yartzheit candle still burns, will burn all day. I’ll light another candle tomorrow, and another candle the next day. Outside, the daffodils and cherry blossoms will open more blooms. Each time I see them, I will hold despair and hope in the same gaze. Despair. Hope. Neither cancels the other out. Each magnifies the other. Each reminds me how precious, how beautiful a life touched by death can be.

 

To All the Attention Seeking Drama Queens

In January 2002, my mother learned her transplanted kidney had begun to fail. She began dialysis. We spoke on the phone each night, and I visited her as often as I could. The mother I had known, the jubilant mother, grew depressed and fearful.

I offered to undergo a test that would determine whether one of my kidneys could be transplanted into her body. I was 20-years-old. She begged me not to have this test. She didn’t want to do anything that could compromise my chances of becoming a mother.

That is how much motherhood meant to her. She was willing to die in order to prevent me from making this decision. And she had hope. She hoped someone else in her family would come forward.

To my knowledge, no one did.

I write those words with tremendous anxiety of how they will be read: No one did.

My mother’s story is complicated. Perhaps someone came forward and she never told me?

Even so, she could not survive another transplant. Her death was inevitable, and within months of undergoing dialysis my mother began to accept this reality. For the first time in her life, she rejected the false narratives of cure and recovery so often projected on the seriously ill.

But I still harbored delusions. I called delusion hope. I pleaded with members of her family to understand the seriousness of her situation. I wasn’t ready to give up, to let her go. I believed she could recover, as she had recovered so many other times before. Others did not believe my mother was actually sick.

A relative told me my mother was exaggerating.

She said, “Your mother is a drama queen.”

She said, “Your mother likes attention.”

My mother was not a drama queen. She lived with a debilitating chronic autoimmune disease from adolescence through middle age. She was beautiful. She was sick. Because she was beautiful and sick and female, she fell prey to cultural biases that fail to acknowledge serious illness in young women. When people looked at her they saw pretty. They saw young. They saw stylish.

As my mother’s health deteriorated, I ignored her pleas. I had the test done. It was a simple blood draw – I barely remember the needle prick. In the blur of her multiple hospitalizations, and my struggle to perform normalcy as our lives collapsed, the test was not a big deal. Just one more errand.

My results came back after she died: I was not a good match. My kidney would not have saved her.

I was off the hook. I’d tried. She’d known I’d had the test. She’d known I was willing to give her a vital organ, even if that choice compromised my ability to become a mother. She knew I believed her. I had not abandoned her.

I’ve been remembering this time in our lives recently because of my own experiences of not being believed about illness in the past few years. I have also felt abandoned by friends and family who do not communicate with me in meaningful ways about Lyme disease, for which I am still being treated  — and this treatment takes a physical and emotional toll. To many, it is as if I am not sick at all, as if my illness does not exist because I present as able-bodied.

Is my illness easy to erase because I am young and female? Or because I am capable of holding down a job and publishing writing, so I cannot have a serious illness at the same time? Or is it because I typically do not perform a sick identity on social media?

Or maybe, I’ve just needed too much, and my needs are exhausting. Autoimmune disease. A miscarriage. A broken foot.  And then, out of nowhere, Lyme disease?

Maybe I am now perceived as the attention seeking, drama queen.

But I am not an attention seeking drama queen. Attention gives me anxiety. And drama?  Who has time for that?

Fatigue from Lyme disease and my current treatment plan means a lot is changing in my life. I cannot engage in relationships in ways that are expected of young women. No late nights. No long drives. I have to say, “No” a lot. Perhaps my “No” is heard as disinterest and not as self protection. Perhaps people think I don’t like them.

My mother gave me tools I would need to navigate chronic illness in my own young life.  She taught me I could say the word ill and the word did not have to be a negative, a reduction, something to resist or erase. Even now, she is present. She is parenting me when I need her the most, showing me the way.

Long ago, she told me illness would distill my relationships.

“You will know who your friends are,” she said. And she was right. I am figuring out who I can depend on and who I should let go. I am asking myself new questions.

Who will I become? How will illness change me?

That’s the keyword. Change. Lyme disease has remapped my body. I have no delusions of cure, of going back to who I was before. Healing is a complicated idea, not a portal to our past selves.

As Cheryl Strayed has written, “Healing is a small and ordinary and very burnt thing. And it’s one thing and one thing only: it’s doing what you have to do.”

What I have to do now is be honest. Be real. Set boundaries and hold tight to them.
Rearrange a life where I’d once felt comfortable. Advocate for what I need. And then, let go of stories, people, goals, relationships, identities, and expectations that no longer support the person I am becoming because I am ill.

This is not about needing attention or being a drama queen or even pessimism. It’s about surviving and reclaiming and persisting.