The Notion of “Fixes” and “Cures”

Together
What is normal?

In her intense, impassioned, compelling memoir, Sitting Pretty, Rebekah Taussig, who has used a wheelchair for mobility since early childhood, tackles among other hard issues concerning disability, the notion of “fixes” and “cures.” She asks why we are so obsessed with fixing ourselves. She suggests, we ought to let ourselves be, take pride in our identity, be the self who is rather than struggle always to be a “better” version of who we are.

We can discover, she notes, that when we accept and dive deep into the unique challenges that every one of us lives with, we will also find in that same place joy and abundance. The rich conversation and dialogue that can follow taking this approach can lead us to a whole new way of seeing and understanding not just ourselves but the world.

looking for a “fix”

Tausig’s questions bit sharply into my memories. Had I wanted to “fix” Kristy and Johnny? Those children, my oldest and my youngest had lived their whole lives with physical and developmental challenges that required consistent care and supervision. Neither developed past the toddler stage although they both lived into middle age. Both had had hundreds of epileptic seizures. Wouldn’t it be natural for me to have wanted a different life for them? Who, in their right mind, would wish to give birth to a child with so many “problems?”

Yet, in Hausig’s perspective, Kristy and Johnny do not have to be seen as problematic. Those of us, who “pathologize and fix some bodies and accommodate others,” (pp. 74-79) present the true problem.

a really brave new world

I find myself swept up by Hausig’s vision, a world that was not full of roadblocks and bends, a world so full of wells and shady places that all find a place there. In that world, no one would construct a building that could not be easily navigated in a wheelchair. All schools would tailor their programs to the learning styles of the students who filled their classrooms, not some idealized “average” student. What she demands that we understand is that “average” just does not exist in the real world. Average is a theoretical mathematical mean as ethereal as the shape of a cloud.

medical magic?

At the same time, I must be honest and admit that I did wish that I could wave a magic wand and make Kristy and Johnny’s seizures go away. Was not that what we were after with all the different changes of anticonvulsant medications that the doctors prescribed, and we tried over the years. And that does not even count the time we kept poor three-year-old Johnny on an impossible ketogenic diet. He could not understand its purpose. I found myself wavering from its strictures and then blaming myself for his seizures. If I had been able to keep to the letter of the diet, would he have become seizure-free? Was getting rid of epilepsy worth losing my sanity? No, I cannot deny that I fell in line with the search for “fixes” and “cures.”

people are not math problems

Not all of that was wrong-headed. Seizures can be dangerous. They come on so suddenly that injury often follows. Usually, cuts and bruises are the worse that can happen, but once Kristy broke her collar bone. But behind the struggle to conquer the seizures was the hope that if we could stop the seizures then their brains could function more “normally.” Maybe then they could lead “normal” lives. Once again, I applied mathematical notions because that is what a “norm” is, to a human child.

parents love to dream

Let us face it, as expectant parents await the arrival of their new child, they most often dream of the future they will provide for the beloved little one. Most parents when asked what they most want for their children will say they want them to be happy. We have, however, measures for happiness and they do not include disability. They do include intelligence, achievement, love, beauty, and goodness. Most of all, even though we do not want to rush it, we do want our children to “grow up.” When that does not happen, the world feels out of kilter.

who are the grown-ups?

Yet, people with developmental disabilities do “grow-up.” They just do it differently. As parents, we must shift our meanings not “fix” our children. As a society, we can note as well that some children who have no apparent “disability” don’t seem to “grow-up” in the common sense of the word. They do not become financially independent. They never find a life’s work. They never partner successfully. Do we stop loving them? No. But we do often try to “fix” them. It often means the very happiness we wished for them becomes that less possible.

rethinking our culture

This brings me back to Tausig and the importance of her book. She is calling on us to rethink “some of the most deeply ingrained beliefs we carry as a culture.”

Can we do it? It is asking a lot. I, for one, am going to try. In my memoir, I will not hide how hard it sometimes was to meet my children’s needs.  I will, however,  point out that many of the challenges came from the roadblocks our culture placed in my way. I had to push those aside to enjoy the privilege of living with the unique, wonderful people who were my children – all of them.

“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.” -Francis of Assisi

Kristy dressed up with watering can
Kristy at her most beguiling

Make Them Pop Off the Page

Johnny thinks a sculpture is a fort.
keeping a promise

Last week’s blog post, “Memoir as Smorgasbord,”  I promised to tell you the most enlightening moment of the memoir writing course I took this autumn from Ellen Blum-Barish.

two heads are better than one

Every class contributed immensely to expanding my understanding of memoir creation. All the discussions were lively, supportive, and inspirational. But the shining moment of the class for me was the one-on-one hour that Ellen spent with me. As a component of the course, Ellen scheduled a one-on-one hour with each student. She encouraged us to choose whatever aspect of writing we believed was giving us the most trouble, that we found the most discouraging.

I told Ellen I struggled with how much of my story of parenting two children with profound disabilities to share. The narrative covered so many years and so many different challenges as Kristy and Johnny’s needs and capabilities changed and shifted. The work felt encyclopedic. Where did I begin? Where did I end? What could I leave out and still be authentic?

caught in a maze

I knew my obstacles were not unique but did not see an effortless way through the maze. Ellen asked one question. That question turned out to be the key to the locked gates between me and a finished draft. “What,” she asked, “is your mission in writing this memoir? Are you hoping to inspire or help other parents of children with similar disabilities?”

“Absolutely not,” was my immediate response. “I can only tell what happened to us and how we muddled through. I can’t pretend to have the answers other parents might be seeking.”

seek your mission

“That’s totally valid,” she replied. “I completely understand, but there must be something driving you to tell this story. You need to be able to name that very clearly. That’s the only way you can discern the parts of the story that must be written.”

I knew why I wanted to write this memoir. But I had not thought of it as a “mission.” “Kristy and Johnny were such special kids,” I told her. “And I mean that in ways that go beyond their special needs. They were unique and wonderful, and they gifted the world with their presence. I do not want the people in our family to forget them. I’m writing this story so that their niece and nephew, cousins, and the many other folks in both our families and among our friends can remember them as the extraordinary human beings they were.”

there’s your focus

Ellen’s face crinkled in a big, bright smile. “Wow, that’s a mission for sure. It also definitely tells us where the focus of the memoir needs to be.”

“It does?” Her claim perplexed me. It did not sound like it limited the span of the story very much to me.

“Without a doubt,” Ellen stated, “You have to tell the stories that make them come alive. You need to make Kristy and Johnny pop off the pages of your memoir. Choose to tell the things about them that were unique and stood out. Let the reader really know them.”

still caught in overwhelm

“I see how this theme could be a good guide, but it still feels like a lot of material,” I objected.

“That where there’s a trick of the craft that comes in,” Ellen explained. “Limit yourself to a certain number of scenes – much like you were writing a play. Then choose the action that would bring those scenes alive.”

Ellen noted that this is how she was able to bring clarity to her own memoir, Seven Springs. https://ellenblumbarish.com/tag/seven-springs/

That work covers forty years of her life, yet she focuses on seven specific springs during those years to tell the whole story. I knew and loved Ellen’s book. Picturing how it laid out, I could envision tackling my own project in a comparable manner.”

mythic numbers

“Sometimes,” Ellen said, “certain numbers have a particular meaning for us spiritually and emotionally. Working within the confines of such a number can inspire and enlighten us.”

She advised me to sit with that notion and discover my number. Once I knew it, I could start working out what the “scenes” of my “play” might be.

This approach has galvanized me. I have plowed ahead – not creating scenes just yet but recording down all the best information I can about Kristy and Johnny. Once I have that in mind, I will let the contemplation begin. I’ll let the number emerge. When it happens, you will be among the first to hear about it.

“One of the most important things you can do on this earth is to let people know they are not alone.”
― Shannon L. Alder

Kristy with rag doll
The older Kristy got, the bigger her rag dolls became.

Memoir as Smorgasbord

Newborn immediately after birth
beginnings and endings

I announced in this space on August 30, that before the year is over I will complete my memoir.  It’s an ambitious task because, in that narrative, I attempt to cover all the years I shared with my two extraordinary children, Kristin Margaret and John Brophy. That journey began on May 14, 1969, the day my Kristin was born, and ended on February 3, 2015, the day she died. Forty-five years.

Birth and death do not necessarily make satisfying beginnings or endings for a story. Life’s meaning is not in the coming and the going, but in what happened in between. Yet, there is so much! It all feels terribly important, but an impactful memoir needs to be succinct. A long, rambling narrative loses readers long before they learn the important things you need them to know.

looking for a life raft

By the time I had written halfway through the fifth version of my memoir, I knew I required serious help. I signed up for a writing class. Rather than a course on how to write a memoir, author/mentor Ellen Blum Barrish offered a “smorgasbord” of topics. Each was designed to help potential memoirists dig deep into their own inner experience. I wasn’t entirely certain that the class was what I needed, but I trusted Ellen and I couldn’t go it alone any longer.

What a good decision that was!

defining truth

The very first week, we dug into the conundrum of truth in memory. We dissected Amye Archer’s searing essay, “Writing Truth in Memoir,” in which she adjures writers to give up hidden agendas they uncover as they write. “It is more important to be honest than vengeful,” she warns us. We are not writing to make the reader “be on our side.” For our story to be visible to our readers, we have to pull the lens farther back than that.

Amye made me realize I had to watch out for my own hidden agendas. I wasn’t after revenge, but I did tend to “protect” my characters.

what is a family?

Week two’s topic really excited me. “Writing Family” was exactly what I was trying to do. I looked forward to hearing about the other writers’ struggles and triumphs with this topic. At first, the evening’s reading disappointed me.  It wasn’t about “real” families. The essay poignantly recalled the writer’s early days in the funeral industry and how the personnel at the funeral home formed a close-knit and caring “family” so that they could better support the grieving families whom they served.

No, that wasn’t exactly what I hoped for. Yet, when we talked about all the different ways people form “family,” I began to see our story, mine, Kristy’s and Johnny’s, against a backdrop of a family that extended beyond biological connection.

No, not that funny

Our focus for the third week, “Writing Humor,” had me cringing. I have no idea how to be funny. When I was a professor I would hear students in other classes laughing uproariously and a sharp, green slice of envy stabbed me in the heart.  My studies never laughed in my classroom.  Maybe I should have been grateful, but I wasn’t. I took heart, therefore, that as our group discussed Amy Poehler’s “Take Your Licks,” a humor piece about a job she had as a teen, I found out I wasn’t the only one who didn’t find it funny.

I felt kind of sorry for Amy. After all, she is a comedian. She has to be funny to earn a living.  I don’t. I gave up worrying up hope to entertain readers by showing them the funny side of my story – there wasn’t one.

writing loss

“Writing the Lost Loved One,” the theme of week four most likely was the one that made me sign up for the course. My memoir focused not on me, but on two beloved lost children. They say be careful what you wish for.  The reading that Ellen chose for that week ripped my soul apart. I could hear Jaqueline Doyle’s voice cry out from her essay, “Dear Maddy,” “Talk to me, Maddy. Tell me what it was like. Rise up from the depths of twenty years in all your shadowy splendor. Tell me.”

We do that, those of us who have lost a loved one. We don’t want to let go, especially of someone yanked away from this world “before their time,” whatever that is. Doyle’s abrasive honesty made me question myself.  Did I dare put the searing blaze of my own emotions into black and white and offer them as a sacrifice? Was, perhaps, my whole project a mistaken quest?

perspective can be everything

We examined writing about trauma in the fifth week of class. We read both a touching testament to the moment a woman realizes her marriage is over and a horrifying witness to the 9/11 attack on the Twin Towers. The latter, Brian Doyle’s “Leap,” might appear to be the more “traumatic.” After all, it depicts people jumping from window and hitting the pavement transformed into a “pink mist.” That is only one of many tragic images Brian presents.

Yet, we found ourselves equally engrossed in the pain of the woman in the first piece. Our assessment of the two different pieces reinforced my conviction that how well a writer crafts their tale can determine how well the story will grip their readers.

always more to learn

Every week of the class continued to build my understanding of what it means to write from the very core of one’s being.  It was my one-on-one session with Ellen, however, that answered many of my most troubling questions about my memoir. She also gave me a whole new perspective from which to view my life. That tete a tete will be the topic of next week’s blog post.

Memoir isn’t the summary of a life; it’s a window into a life, very much like a photograph in its selective composition. It may look like a casual and even random calling up of bygone events. It’s not; it’s a deliberate constructionWilliam Zinsser, in On Writing Well (2006; 30th Anniversary Edition)

Cemetery angel
Photo by Tim Mossholder

 

Little Boy Lost

Rapid transit Chicago
The same, yet different

“Your memoir stories all seem to focus on Kristy,” a reader commented recently.  She then asked, “Did Johnny have the same disorder as your daughter?”

There is no straightforward answer to that question.  It’s not like answering, “Did both children have the chickenpox?” There were many ways that assault on Kristy’s brain presented itself that resembled symptoms that Johnny had as well. Frequent grand mal seizures was one and developmental delay was another. Yet, there the similarities stop. They had such different personalities that at times it almost seemed like they had two completely different syndromes.

Recently, I shared a Johnny story with a group of fellow memoir writers. It will illustrate those differences. Maybe it will help other readers understand why I struggle so much to give an honest account of our life together.

***

no time between crises

Kristy and I had. just returned from an appointment with her physical therapist.  I pulled our minivan into the parking space behind our Chicago rowhouse and before I’d even turned off the engine, my thirteen-year-old daughter Betsy, her red braids flying behind her, came running down the back-porch steps, “We can’t find Johnny,” she shouted.

My heart sank into my gut.

Well, crisis or not, I couldn’t just let Kristy sit in the car. “Help me get your sister into the house.  Have you searched the whole house?”

“Yes. Twice.” She screeched. “We looked everywhere, even in the clothes chute.”

“What about the piano top?” It wouldn’t be unlike him. “Where’s Carrie?”

“She’s calling neighbors,” Betsy said as she helped me ease her older sister into her wheelchair. At the back door, I forced myself to focus on getting Kristy and her chair down the five steps to our basement rec room.

first things first

As I wheeled her up to the Formica table at a diner-style booth in the basement, Kristy, oblivious to the panic around her, pronounced, “I’m hungry.” I glanced at the TV. Its digital clock read 1:29. Kristy had to eat. I couldn’t risk her having a seizure right now. We had to find Johnny.

“When did you miss Johnny?”

“About twenty minutes ago.”

“He can’t have gotten far.  Go down the alley and check people’s yards? I’ll get Kristy something to eat.”

“Should we call the police?”

“Oh, my God, I hope not. Let’s wait a bit.”

I fixed Kristy a quick peanut butter sandwich and a glass of milk and made sure her chair was securely braked.

I found fifteen-year-old Carrie sitting on the rug in the living room, her long wavy hair draped over her knees. The telephone cord straggled from the far wall and into her lap.  “Thank you,” she muttered, “that’s so good of you.  Yes, please call right away if you see him.” She looked up eyes wide and chewing her lips. “That was Louisa McPharlin.”

I nodded. It made sense to check with Louisa. Hers was the last house before the “L” tracks.

a false sense of security

Our home was part of a community enclosed by wrought-iron fencing with several heavy iron gates at various entrances.  If Johnny’s wandering kept him within the borders of those fences, someone who knew him would spot him. The gates, however, were never locked or even closed.

Although ten years old, Johnny processed the world like a two-year-old. Outside the gates he would encounter busy city streets, dozens of strangers, coming and going from the elevated train station and from buys commercial Lincoln Avenue. Crowds of DePaul University students also hustled along those sidewalks on their way to class. In the midst of so many people, Johnny could disappear, or even more horrifying a predator might spot him.  Like every mom, I read the stories of children disappearing and then put them quickly out of my mind. Now they all came rushing back at me.

holding on to hope

Carrie didn’t find a single person who had seen him. Betsy hadn’t returned yet. I let myself hope that she’d found him. Johnny’s gait was at best a slow shamble. Bringing him home could take her a while. As frightened as I was, I knew that wherever Johnny was he wouldn’t be afraid. Nothing had ever scared him. He often laughed loudly and long while sleeping. I claimed that he was dreaming of monsters and found them hysterically funny. But laughter couldn’t protect him now.

Bringgg! The front doorbell!  Carrie and I tripped over each other as we ran for the front door. Quicker than me, she flung open the heavy wooden door. There stood a huge, uniformed policeman with a grin on his face and his hand on Johnny’s shoulder.  When I lurched forward, he held up a restraining brown hand. He looked down at Johnny and gestured toward me, “Who is this?”

“Mommy,” Johnny grinned. Then added, “Bathroom.”  That galvanized me into action when I might have otherwise been too stunned to even speak.

“Carrie, take your brother to the powder room,” I directed her and then stammered, “Where did you find him? How did you know where to bring him?”

saints and good samaritans

“A kind woman noticed him lingering outside the De Paul Bookstore. She signaled me in my car. Then she pointed him out and said, “He looks big enough to be on his own, but something’s not quite right.”

“But the bookstore is across Fullerton Boulevard,” I exclaimed. “How could he cross that busy street on his own?”

“Well, we don’t know, but he did. The lady spotted him trying to get into the bookstore, but he couldn’t figure out where the door was.”

I breathed a quick thank you prayer to St. George, the patron saint of books. Johnny, like the saint, was crazy for books. George, it seemed had spread his wings over my son. “Johnny can’t pass up a book.  Otherwise, he might have wandered on,” I told the officer.

His big head nodded. “So, my partner and me tried to talk to him. He just smiled a sloppy grin. Saw the lady was right. So, we were going to take him the station when he pops up, ‘832 Belden.’”

I says, “That where you live? He says ‘My house.’ So, here we are.”

“We worked hard to teach him that but weren’t sure he’d really understood.  He lives in his own world most of the time.”

“Yeah, I see that.  He’s been talking about Grover Monster most of the time.”

My fear had left me weak. Now relief drained what was left of my energy. “Thank you so much. I wish I could thank the woman who found him.”

“She didn’t want to give us her name, just seemed relieved to hand over the problem.”

and the day goes on

Made sense to me. Sometimes, I wished I could just “hand over the problem.”

“Sorry to say this, ma’m,” the officer said, “But you need to keep a closer eye on your son. Maybe you should think about installing alarms on the doors.”

He had a point, but I didn’t want to turn my home into a prison. I looked straight into his deep brown eyes, “I’ll talk that over with my husband.  Right now, I’d better get Johnny some lunch.”

He nodded and headed down the steps.

Saints
Photo by Fernando Santando

You Lived It Differently

Sign reading Proof
What Readers Deserve

In unpacking Tracy Seeley’s quote about the memoirist’s agreement with her reader, my September 20 blog post opened a discussion on what writers owe their audience. That essay, however, focused mostly on my promise to tell an emotionally true story and didn’t ponder Seeley’s warning that “other people in my book would tell the story differently.” My Ruby Slippers.

This week I’ll first address the issue of other people’s take on the same experience. I then tackle another obligation memoirists have to their readers — something has to happen in the narrative.

You Lived It Differently

But that’s not what happened.  Don’t you remember? It went like this.

These are the responses that I must brace myself to face if I go forth with this project of writing a memoir. I didn’t live my story alone. Dozens of persons accompanied me along the way from birth until I woke this morning. None of them, other memoirists have warned me, will remember the events and situations we shared in exactly the same way I do. In fact, their memories may be diametrically opposed to mine.

Because time travel is science fiction, we cannot revisit the moment in time of the remembered incident. Wrangling over who remembers more correctly is useless and can be harmful to an otherwise solid relationship. The better response writes, Marian Roach Smith,  the author of several memoirs, is to keep this phrase handy, “I realize that’s not the way it happened to you. It is, however, the way it happened to me.”

Memoir’s deep subjectivity

Saying this will help me and relatives or old friends who challenge my recollection to acknowledge the deep subjectivity of memoir. I invite others to tell the same story in their own way. Doing so lets them know I will honor their truth just as I hope they will honor mine. Wow! That’s an overwhelming declaration.  If it is only my truth, my version of the story, who else is going to care?  That’s a valid question.  Yet, subjectivity won’t invalidate the story.  Rather, only my deepest personal understanding of what I experienced and what I witnessed can possibly attract an audience.

required authenticity

If you read my words and you don’t find me there, you will stop reading. You are, after all, reading that book, that essay, or that blog post because you care about my point of view, about my take on things. Perhaps, you have known me for all the years I mothered Kristy and Johnny. Maybe you wondered, “How does she do it?”

Now, I’ve written a memoir.  Readers expect an honest account – not some Pollyanna perspective on parenting a child with special needs.  They don’t want hocus-pocus. Nitty-gritty holds their attention. If the real Jule is missing in action, if it sounds like someone else’s story, you won’t finish.  You are expecting to hear my voice.  I can only tell you what I remember about how it happened and how it felt.  If one of Kristy or Johnny’s sisters wants to say, “But, Mom, I remember…,” I’m happy for you to hear her tale.  She was there too.  She will bring her own brand to the narrative just I’m trying to bring mine.

Bringing my brand to the memoir is one primary responsibility I commit to. Another is telling a story in which something happens.

Something Has to Happen

It might seem obvious that readers expect something to happen in a story. That’s the nature of the story, isn’t it? It also is true that if a child is born, grows, becomes ill, becomes even more ill, and dies, “something” has happened. But that’s a biography, not a memoir. Poignant as such a story might be, it shouldn’t be published – at least, not in such a bare-bones fashion.

“Something has to happen” in the narrative means significant change takes place within the writer’s very soul.  In an important way, by the end of the tale, the protagonist is not the same person she was when the story began.  If she can’t weave a transformation into the fabric of her story, the writer probably shouldn’t be creating a “memoir.”

The elusive “something”

That raises lots of questions for me. What sort of evolution could readers be looking for? How do I show it?  I am not Saul, knocked off my horse on the way to Damascus, blinded, and converted to being a follower of a new faith. Fortunately for me and most other memoirists, a transcendent conversion isn’t necessary.  Less drama will do.  Yet, change must happen.

Sister Rosemary Connely, the director of Misericordia Home, often told the parents of the children in her care, “Not one of you chose to have a child with mental or physical handicaps. But because you have this child, you have accomplished things you never would have thought yourself capable of doing.  You are a better person than you would have been.”

not always for the better

She is right even though most of us would have settled for being a somewhat lesser person if it meant our children were more typical. Sister’s faith in us was touching. Simply being the parent of a child with disabilities doesn’t make you a better person. Sometimes the weight of the experience causes you to behave shamefully.  Simply giving birth to a child with serious challenges doesn’t automatically turn one into some kind of saint.  It can actually turn some people into devils.  But, I am convinced it does change parents in some way.  There is no remaining the same person you were before this child came into your life.

might i be different?

Thus, in writing a memoir about Kristy, Johnny, and me, I carry the obligation to discover and reveal how being their mother changed me.  Who am I today that I never would have been if I hadn’t been Kristy and Johnny’s mother? It’s a question anyone can ask themselves about all their committed relationships. For me, this year, it must be one that my memoir answers.

Johnny and Jay reading in the yard
So many days were quite wonderful! Johnny and Jay relax in our yard.

 

Dwell Deeply in the Only Life We Have

Old diary and photo with flowers

Memoirists enter into an agreement with readers: I will tell you an emotionally true story in a skillful way. I will make it worth your while. And while my memory is imperfect, I haven’t invented memories. I haven’t invented facts. If I compress timelines, combine characters, or conflate events, I will tell you. The other people in my book would tell the story differently; this is my own, true version.” — Tracy Seeley, author of My Ruby Slippers

Being honest isn’t easy

Truth is slippery. It sounds so easy. Just be honest. Tell it like it was. Memory, however, is a living, breathing power and like all living beings, it changes constantly. Every day, I experience thousands of moments. Each one of them crowds itself into its own little corner of my brain. None of them are forgotten, but all are transformed by the space they share with the memories that were there before they arrived. And as new memories burrow in, they modify those that came before them.

It leaves me wondering how I keep my implicit agreement with my readers as I write my memoir.

craft is a given

The “skillful” part I get. I stay with my craft, writing, editing, and rewriting. I submit excerpts to writers’ critique groups and to mentors. Time to rewrite once again taking to heart the insights these wise counselors have shared with me – over and over until my writing clearly communicates my voice and shares my vision. Skill alone, however, will not make my story worth your while.  Only if you sense right from the beginning that what I tell you is emotionally true will you stick around to hear the end.

and so is imperfection

It’s a given that as a reader, you understand that my memory is imperfect. You know I must compress timelines. You’re not expecting to read a day-to-day diary. You may, indeed, accept that I combine some characters. Over the course of Kristy and Johnny’s lifetimes, I consulted with so many doctors and educational specialists that it is inevitable that these people run together in my mind.  As to conflating events, there were so many emergency room trips in our lives, it is only natural that some of them blur together while others stand out in vivid detail. This is true also of the multiple bittersweet and funny moments I shared with my two extraordinarily special children.

but lying is unacceptable

At the same time, you fully expect that I won’t make up a memory just so it fits the narrative.  Also, my story happens in a particular time and place. Therefore, the backdrop against which our lives played out, Chicago, Illinois, during the last quarter of the twentieth century and the beginning of the twenty-first, must be portrayed with the greatest possible accuracy. For that I cannot just rely on memory. Research might not be the “fun” part of writing, but without it the memoir will lack luster and solidity.

digging deep is essential

There are no external references or resources, however, in which I can find my own emotional truth.  That vital nugget, that essential core, of a memoir exists in one place only, deep inside my very self. I’ve buried it so deep, I’m not certain that I can dig down far enough to reach it. There was a day almost fifty years ago when I sat on my kitchen floor and sobbed. I held in my lap, my four-year old daughter, unconscious and limp in my arms. She had just had had a wrenching grand mal seizure. I wept in frustration that none of the seizure-control medications were working. I wept in relief that I had caught her before she fell, and she hadn’t been injured this time. I wept in helplessness because I couldn’t make my little girl’s life better.

yet unbelievably difficult

Then Kristy’s breathing slowly became more regular. Her two-year old sister, Carrie, came up to me and patted my shoulder, “Be okay, Mommy,” she pleaded. At that very moment I heard their infant sister, Betsy wail from her crib.  I smiled at Carrie and wiped away my tears. I got up, lifting Kristy, and carrying her to a couch to sleep off the aftereffects of her convulsion and went to get my hungry baby.  Carrie trailed along behind me and stood beside us as I put her sister to the breast.  Her eyes were still wide with consternation.  I smoothed her dark curls back from her forehead. “It will be okay,” I promised. It was the last time I cried over a seizure and maybe the last time I accessed my own emotional truth.

can I do it?

Because I now want to tell Kristy’s story because I believe she deserves it and my grandchildren should know this part of their heritage, I must unbury almost fifty years of hidden emotions. Discerning which are the true ones and which are only the ones I wanted to feel will not be easy.  But if I don’t do this, you won’t read the memoir. It won’t be worth your while.

But how will I reach emotional truth as honest and raw as Anne Roiphe attains in her essay, “A Child Has Died,” published in Tablet, an online magazine about Jewish life?  Read it and see what I mean.

I can only try

Of course, my language cannot be Roiphe’s language.  I don’t have her voice. Still, I want you to feel my loss the way I feel hers. That’s the task I’ve set for myself. Almost everyone else in my story would tell it differently because they lived it differently. All I can promise is to do my best to tell my own true version.

Jule reads the Christmas story to Kristy, Betsy and Carrie
Note the net on the spiral staircase. We lived every day with the illusion that it kept our daughters safe.

 

 

If I Had Known

Question mark by doorway
Be careful what you promise

In last week’s blog post, I promised that this week I would “bring you up to date on how far I’ve gotten so far with the memoir, examples of advice I’ve received, and the quandaries I face as I move forward.” The sentence makes me chuckle because, of course, I couldn’t possibly do all that in one short blog post.  Instead, I can share what I consider to be one of the important pieces of advice I found about writing a memoir: “Begin by asking yourself a lot of questions.”

don’t do this

This is not what I did. Rather, I just plunged in and started telling a story about a young couple who longed for a child but struggled with fertility issues.  Then page after page I recounted the days and years of their life as a family. No wonder my writing colleagues felt lost as they tried to find a theme and to keep up with dozens of characters. The manuscript was a roller-coaster ride up the peaks and down the valleys of our life.  Readers had to hang on for dear life because it never paused. I didn’t take time to reflect on the challenges or the joys for very long at all. And I kept how I might be feeling about what was happening completely to myself.  Did I even know then or now how I felt? I didn’t stop to find out.

After eighteen months of writing and submitting sections of the “memoir” to writing workshops for review and always hearing the same critique, I finally realized there was something fundamentally wrong. Kristy’s story remained as compelling as ever, but I had not yet imbued it with its true power.

now and then

I put aside writing narrative and took up asking myself questions. Many different guides to writing memoirs offered a myriad of possible questions I could ask myself.  I read several of these. The one that struck me right between the eyes was, “What do I know now that I didn’t know then?”

What I now know is the Kristy never had a chance.  The neurological disorder that eventually destroyed her resided deep inside her infant’s brain from the day she was born. As best I can understand and explain it, the force behind this disorder was a genetic anomaly. It was not carried on a gene she inherited from her father or from me. Rather shortly after conception genetic mutation, a so-called “de nova variant” caused her developmental trajectory to be unevenly and unpredictably stunted.

blissful(?) ignorance

I did not know any of this until Kristin was thirty-eight years old and most of the damage to her body and mind had already happened. During those thirty-eight years, my husband and I sought the best medical care we could for Kristy. We never let go of our hope that someday a medication would come along that could control her irretractable seizures. We firmly believed that if Kristy could stop seizing, she could regain some of her lost abilities and even start learning new ones.  That dream dimmed greatly as the years went by but never disappeared entirely – until 2007.

not a real answer

That year, genetic testing became available for her. The tests revealed the root cause of Kristy’s seizures and disabilities and why her brain had slowly atrophied. (Brain atrophy is a wasting away of brain cells, or more accurately, the loss of brain neurons and the connections between them that are essential for functioning properly.) EEG exams performed when she was young showed no damage, but the older she became the more these pockets of atrophy appeared.   By the time the doctors could give us this genetic analysis, Kristy was as helpless as an infant, dependent on others for all her needs. The diagnosis was, therefore, not a shock, but finally an answer.

willful naivete

Now when I ask again, “What do I know now that I didn’t know then?”, the question deepens into, “Would I have wanted to know then, what I know now?”  My only honest answer is “No.” Although it was hard to have our hopes dashed year after year, I wouldn’t want to give up the joy our beautiful, happy little girl brought us through the first twenty-five years of her life. If we had known how ultimately devastating the disorder would be, fears and forebodings would have tainted all those good times.  And we would have been helpless to stop the inevitable.  It was by far better to live each day, each year, as it came to us without any knowledge of its heartbreaking end.

through a mirror darkly

As I write the memoir, I will have to hold up a double mirror to my own inner thoughts, reflections, and feelings.  My readers need to fully understand all the optimism I held onto as a young mother, all the joy I got from being Kristy’s mom. Yet, the story must also carry my awareness of its tragic end.

“Life can only be understood backwards; but it must be lived forwards.”
― Søren Kierkegaard

Doorway opening out
Photo by Jan Tinneberg

 

A Memoir Is NOT about Me.

I almost quit blogging

When you write a blog you need to choose, according to the common wisdom, a topic about which you are passionate and upon which you have a great deal of expertise. For me, this narrows down to two subjects – one, my own life story, and two, love & committed relationships, my field of scholarly research and teaching.

A few years back I wrote a few sample blog posts upon the latter topic and submitted them for review to a small group of fellow writers. These colleagues, members of a Portland writer’s workshop strongly preferred the stories about my personal life to the essays on family life, love, romance, and marriage.

 everybody is an expert–at something

Other writers, they stressed, already commanded the stage on the topic of committed relationships. And, frankly, these commentators told me, those bloggers did a much better job of elucidating that field than I did. On the other hand, many of my short tales about my life as a wife, student, teacher, and mother were quirky, warm, and captivating.  Upon that subject, I was clearly the one and only expert.

So, following their advice, for two years I’ve devoted my blog, here on my website, “JuleWardWrites,” to vignettes of various moments in my life. Most of these stories focused on my time as a wife and mother, but a few reached back into my childhood. None have, however, examined my life since my daughter Kristy died in 2015.

blog posts as the “trailer”

That’s because while I’ve been writing the blog, I’ve also been working on a memoir. Through the memoir, I am trying to share with others the struggles, the failures, the mystery, and the moments of great joy that filled the forty-five years of my life I shared with Kristy. She was only nine months old when she experienced the first symptoms of what would prove to be an unpredictable, devastating neurological disorder. The scientists called it “Progressive myoclonic epilepsies/neurodegenerative encephalopathy,” but that is simply a description of what the patient suffers and not really an explanation of what causes the disorder. The known causes are many, but most of the time the cause is unknown. The disorder strikes like unseen, unheard lightning.

it just wasn’t working

I have submitted drafts of the memoir to writing colleagues for critique. And I hear familiar comments, not unlike those leveled against some of my blog essays. The blog posts, a friend claims, isn’t honest. “It only tells the good stuff.”  The memoir, fellow writers tell me, doesn’t dig deep enough into the narrator’s emotions.  It portrays a protagonist who always seems to be in control despite the complex challenges she faces.  And they don’t believe that could have been true. And they are right.

Last week, I read an interview with Rebekah Taussig, author of the new memoir new book, Sitting Pretty: The View from My Ordinary Resilient Disabled Body. Rebekah, paralyzed since toddlerhood, has already gained audience for her book through her Instagram account, Sitting_Pretty. The interviewer praised both the Instagram account and the book, a collection of essays, for the way they were able to create an intimacy with the reader.  One felt, she wrote, as though the memoirist had “hooked elbows” with you to walk you through her life.

come, walk with me

Reading the interview affirmed a resolve I had made earlier this week. Just nine days ago, one of the people I hold most dear in this world, my brother-in-law, Marty Ward, succumbed to Covid 19, despite being fully vaccinated. Marty had been quite healthy and had a long bucket list of grand adventures planned. People in his family usually have long lives. His totally unexpected death cracked my heart. It also jolted me awake to the fact that I could no longer dilly dally about writing my memoir.  Kristy deserves to be remembered.  Only I can tell her story.  I must get going.

Like Rebekah, I plan to take you with me. For the next year, the blog will take a new turn. It becomes the story of my journey into the depths of my heart and soul as I struggle to give an honest account of my years as Kristy’s mother.  This means it will include the challenges any writer faces such as dealing with critique, the hard work of rewriting, again and again, the difficult task of finding an agent, and the search for a publisher.

lots of questions, but also some answers

The blog will be full of questions that I’m hoping you’ll be willing to answer.  I am open to critique as well.  I don’t write simply for the positive feedback. Let me know what engages you and what leaves you cold. In return, I promise to share with you everything I learn about writing a memoir.  I believe you probably have a story to share.  Taking this walk with me might be the inspiration you need to sit down and begin that book you were always “going to write.”

September, the start of the school year and the month of my birthday, has always been a time of new beginnings for me. Next week, my first post of September will bring you up to date on where I am at this point. I’ll share examples of wisdom  I’ve culled and how that’s working out.

Let me know what you think about this new twist.

Jule and Kristy 1969
Kristy and Jule, Chicago, 1969
  1. You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better. ~Anne Lamott

Winter of My Discontent

Winter beach
Delayed gratification
Children watch snow through window
Photo by Kelly Sikkema

Well, at the end of my August 9 blog post I left you hanging. My husband Jay and I had moved our family to a beach house on the Indiana dunes in Michigan City, Indiana. We intended to spend the summer there while during the renovation of our Chicago Victorian rowhouse. At the end of the summer, however, months of restoration work remained. We extended our beach stay to Christmas.

As you might have guess, December came and our city home continued to be uninhabitable. We would be staying on the beach for the winter.

swimsuits to snowsuits

The eastern shore of Lake Michigan in summer is a sunny paradise of warm sandy shores lapped by cool rolling waves perfect for body surfing. Winter transforms it into a raging sea of surging, angry, crashing breakers eating away at the dunes. The blue skies turn metallic gray and the wind makes it difficult to stand upright. It’s a place of majestic beauty, but not a playground for small children. My kids and I confined ourselves to the four walls of the cottage for the duration. The few desperate forays that we took to explore the dune in front of our house began slowly.

Children building snowman
Photo by Ethan Hu

It takes quite a long time to bundle four young children into snowsuits, winter hats, mittens, and boots. Usually by the time, I finished gearing up the last child, the first one was unzipping her jacket, complaining, “I’m too hot!”

When we got outside, we trudged to the top of the dune and surveyed the fierce power of the winter lake. By the time, we trekked back to the house, everyone, including me was ready for hot chocolate. The house that had seemed quite spacious when we had first viewed it the previous spring came to feel very cramped as the five spent hours after hour indoors. One blessing of those months was that Johnny was a breast-feeding baby. The oxytocin that flowed into my blood stream during our long sessions of nursing helped me keep my sanity.

Jule and the children, Christmas, 1977We had been promised Christmas in our renovated Chicago home.  Instead, we celebrated it on the dunes, which turned out to be as warm and traditional as we could wish for – right down to the photo of the children and myself coming down the stairs on Christmas morning. Jay took the Christmas break off from work and we had a hilarious New Year’s Eve with the children. I concocted a Chinese dinner. I even baked fortune cookies with handwritten fortunes inside. Unfortunately, they were rock hard and we needed a hammer to get our fortunes out! The break refreshed both Jay and me. Just three more months, the architect promised. We crossed our fingers.

a storm like no other

Then the snows came. Our cottage stood less than ten miles from the Michigan state border and we were swept up in the great Michigan blizzard of 1978.  No one could remember a storm quite like it, but anyone who lived through it remembers it to this day. Massive and powerful, it turned deadly before it was over. In the midst of it, I didn’t feel at all sure my children and I would survive.

Blizzard
Photo by Christian Spueller

Carrie and Kristy were home from school when the January 26 sky turned dark grey.  The National Weather Service had been warning of impending storm, but even they had no idea how big it would be. Within hours blowing snow pummeled our house and the dune, accumulating so quickly it obliterated the children’s play climber within two hours. And it just kept coming.

The South Shore trains stopped running so Jay could not get home. He tried calling us, but the lines were down and while our phone rang, no voice came over.  The snow didn’t stop until Friday afternoon. By then thirty inches had accumulated. The snow covered our ground floor windows and the cottage was eerily dark. Television reception had disappeared, but the radio kept broadcasting.  This connection to the outside world saved my sanity.  The broadcaster was snowed into the station for 48 hours.  At one point, he offered $100 to anyone with a snow mobile who would bring him a six-pack.

Beer was the last thing on my mind. We didn’t lose electricity.  I don’t know why, but simply felt grateful. It was a week before Jay could get home. Even then he had to bribe a taxi driver to bring him to the cottage since the beach road remained dangerous.  The blizzard was over, but not the snows.  Both in Indiana and in Chicago the next few winters would prove to be extremely snowy, but that’s the one that is seared on my memory.

escape from the beach
appalachian Mountains
Photo by Ben Bracken

At the end of February, we knew we needed to get away from winter. We rented a motor and drove south. It was tricky going because the snows followed us all the way over the Appalachian Mountains. After one twisting, turning miles-long drive down a steep mountain side, we pulled into a truck stop for a break.  We piled into the diner for lunch.

One of the truckers ambled over to Jay, “Did you just drive that rig down the highway?” he queried.

“Yep,” my husband said, “And it was damn frightening.”

“My, god, man” the trucker said, “No one’s been on that road all day.  You’re luck you’re alive.”

“Oh,” Jay replied. “I thought it was odd we didn’t run into any other traffic.”

much needed magic
Little girl at Disney World
Photo by Joel Sutherland

Overall, however, the trip was a great success.  The girls reveled in their first trip to Disney World although after coming out of the Haunted Mansion, Betsy chided Jay, “You shouldn’t have taken me in there.  I’m just a little girl and I was really scared!”

We continued on to Delray Beach to visit Jay’s mother at her condo.  It was great to get out of the trailer and into real digs for a few days before heading back up north.  By that time, there were some signs of spring.

spring revival
Easter cookies
Photo by Jennifer Burk

With spring comes hope. On Mar 20, we moved back to the city in time to celebrate Easter in our new home.  The house shone with gleaming new woodwork and freshly painted walls. The stained-glass windows now not only sparkled but no longer rattled.  The kitchen appliances were not in working order yet, but our neighbors brought us meals for a week.

 

I fell in love with 832 Belden the moment I first stepped inside two years before. It had been very dusty and rather dilapidated, but I imagined how love and polish would bring out its true beauty.  It had taken a lot of love and much more than polish to bring it to its present splendid condition, but now its warm, welcoming presence made my heart sing.  My children radiated joy as they claimed their new bedrooms.  Undoubtedly, I would have adored this house under any circumstances, but after our year on the dunes, my appreciation for this wonderful place overwhelmed me with the shear joy of being home at last.

“Life takes you unexpected places. Love brings you home.

 

832 Belden, Chicago, IL

Dream of the Beach – Plan for Reality

Beach with sunglasses
summer dream
Wasp
Photo by Duncan Sanchez

What could be better? A whole summer living on the beach. Days ruled only by the ebb and flow of our appetites for food, sleep and pleasure – just my children and me for three idyllic months. Well, of course, there were glitches.  There always are. But things held together pretty well. The worst trauma of the summer was a swarming wasp attack on my six-year-old daughter that nearly sent her into anaphylactic shock. Other than that, the weeks passed without grand drama.

back ‘n forth, up ‘n down

The hardest part for me was I couldn’t leave any of my three daughters at the beach on their own. Every time one of them needed to pee or poop, I had to sling their infant brother across my hip and parade with all three up and over the sand dune and back to our beach house. Plus side – between breastfeeding a lusty baby boy and climbing that dune a dozen times a day, I easily dropped back to my pre-pregnancy weight.

Mon and kids at beach
Photo by Dylan nolte

Late afternoons were a bit of a see-saw. Most relaxing was just staying at the beach until the kids were so bushed, I could feed them a simple dinner followed by a quick rinse in the tub and into bed just as the sunset. Time to pour a glass of wine and enjoy a good book. Down side – that meant my husband Jay was staying in the city for the night.  Because we were brand new to the beach community, I didn’t know any close-by families. After a long, adult-free day, I yearned for some grown-up interaction, but Jay’s long hours at the office often meant he missed the last commuter train out to our distant community.

yay! dad’s home
Commuter train
Photo by Redd

On the other hand, the children and I got excited if we knew he’d be home, but that meant getting everybody off the beach by three, up to the house, properly bathed and nicely dressed so that we could meet his train. Pulling this ritual off was touch and go. We too often found Jay waiting at the station for us, hot, sweaty, and feeling deserted. Still, whether we made it on time or not, the reward was dinner at Swingbelly’s, a boisterous sandwich shop that catered to beach families. For me, at that time, it was as good as, if not better than any fine Chicago Loop restaurant.

the end of good enough

Unrenovated houseAll in all, the summer plan worked until it didn’t. By the end of August, we found ourselves mired in disaster. Our Victorian row house in Chicago needed far more renovation than we had anticipated.  We had expected the work to be completed by Labor Day in time for the new school year. On the third weekend of August, we drove with the children into the city for a tour. Many of the rooms were still down to the studs. None of the bathrooms had been plumbed. The kitchen was an empty square. True, we had new windows, repaired flooring, and a cleaned-out basement, but we didn’t have a living space. To ice the cake of disaster, our architect informed us there was no money left in the renovation budget.

now what?

“But we can’t live here!” I needlessly told him.

“Well, we could throw something together for about $10,000 more and you could move in next month,” he offered. “But it wouldn’t be the restoration you were hoping for.”

“What,” Jay asked, “wouldn’t get done?”

“The woodwork and staircases would remain unfinished. We could board up and cover the fireplaces. The kitchen cabinets and the new breakfast room would have to go.”

“In other words,” I confronted him. “We would be worse off than if we had never tried to fix the house up in the first place.”

House renovation
Photo by Nolan Issac

“Not exactly true,” he said. “You have a new heating system instead of the old coal burner and the house is now much better insulated. And we’ve shored up the wall that had bent partially burnt away by that old fire.”

I didn’t find much consolation in his words.  “If instead we go ahead and do what we planned, when could we finish?”

“You’d be in your new home for Christmas,” he assured me.

I looked at Jay with pleading eyes. “We need to talk about this.”

The situation had muted him and he only nodded. Johnny has thankfully slept out this encounter in his carrier on my chest, but now we rounded up our daughters from their risky romp through the half-finished house.

two steps back, one step forward

Montessori schoolAs the children slept on the way back to Indiana, Jay and I grumbled and muttered, half in conversation and half in self-talk. We were too numb for a real discussion.  That took place the next day. Neither of us felt ready to let go of the restoration plan we had put our heart and soul into for months.  This would be our forever house. If we could, we would complete the project. Two main issues took priority. Could we afford to proceed with the remodeling? What would we do about school for Kristy and Carrie? It was divide-and-conquer time. Jay would approach the bank about increasing our renovation loan. I took on the school situation.

the new us
Carrie, 1977
Carrie, 1977

As soon as Jay possible on Monday morning, I phoned the Michigan City school district. For Carrie, there was a straightforward schooling solution. The local public school ran a bus which would pick her up right in front of our house. I really like the open, Montessori-type structure of the school Carrie would attend, and her teacher, a twenty-year veteran first grade instructor, struck me as both competent and extremely caring. For Carrie, our shy child, it wouldn’t be easy to start at any new school, but this one, at least seemed would ease her in.

Child's painting
Photo by Dragos Gontarium

Kristy’s special challenges meant she would need testing before placement. Setting up an appointment for this meant Jay would have to stay home from work for a day, but in the scheme of things that was a small adjustment to make. As things turned out, the class into which Kristy was accepted was considerably better formulated to meet her needs than the one she had been attending in Chicago.

Betsy and Johnny, 1977With Carrie and Kristy’s school issues settled, I began to look into a pre-school which Betsy, age four, could attend. But she put her foot down and refused to go. “I’ve gone to nursery school already,” she said, “but I’ve never had a baby brother before. I want to stay home.”

Pre-school isn’t mandatory and the truth was her company during my long days would be lovely.  I didn’t press the matter.  In the meantime, we did receive the loan extension from the bank.  The restoration work would proceed as intended. We hunkered down to spend another four months on the beach.

commuting becomes a dilemma

Because we now had to wait until Kristy and Carrie got on their school buses before I could take Jay to the train, it meant he wasn’t getting to the office until eleven in the morning. He then had to leave by five to catch a train back to the beach. It was impossible for him to complete his work in such a short day. We had to consider that he stayed in the city for part of the week, but he couldn’t live at our wreck of a house.  Could we afford a studio in town for him?  That would really stretch our budget beyond control.

Chicago apartment buildings
Photo by Chris Dickens

Then the blessings of having a large extended family kicked in.  Jay’s aunt Florence worked for the city, which meant she had to live in the city to keep her job. But her elderly father lived in his home in the suburbs and she was responsible for overseeing his care. Her solution had been to rent a one-bedroom in the city as her official address, but actually live in River Forest with her dad.  This apartment was just off Michigan Avenue not far from Jay’s office.

She offered it to him to use whenever he needed. Gratefully we accepted. Now, I took Jay to the late train on Monday morning and picked him up from a post-dinner train on Thursday night. He spent long weekends with us.  This was our plan.  Very often, however, he had stay in the office through Friday as well. Autumn at the beach was spectacularly beautiful. I was lonelier than ever.

no end in sight

And autumn extended into winter with no end in sight for our renovation project.  What happened next will be the story of my next blog post.

Beach in autumn
Photo by Aaron Burden

“Send your dreams to places you can’t reach; they will go there and they will pull you up there!”
Mehmet Murat ildan