The Value of Community

Together
Idea of community

Everyone’s support system looks different. Thus, what defines ‘community’ for me may not at all resemble your idea of community. We do, however,  share a common need for a community of some sort. We cannot survive without it. Sometimes our community can be as small as one other caring person who sees us through a particularly tough, but very private time. At other times, we need the support of a much broader group of people.

seeking support

Ironically, many of us believe that we should be able to cope with life’s challenges on our own. We hesitate to look for help or seek group support.

community of mothers

That was true for me through many of the earlier years of caring for my children with special needs. It wasn’t that I didn’t know the value of community. In fact, I totally immersed myself in the community of La Leche League, an international association of breastfeeding mothers.  We supported one another by gathering together and sharing information via phone calls, letters, books, and a formal newsletter.

Within that group my awareness of how important peer support could be grew and solidified. Many of the mothers I knew in LLL would never have been able to breastfeed without the help of the group. Others would have felt isolated by their choice to breastfeed at a time when most babies were bottle fed. Instead, they found comradery and a sense of purpose.

without community support

Yet, this dependence on community did not, for me, carry over into coping with the multiple challenges I encountered as I tried to provide the best life possible for my two children with increasingly serious intellectual disabilities. I never sought out a support group of other parents with the same challenges. In that endeavor, for reasons I cannot explain, I felt compelled to handle my struggles on my own. I did my best to present to the world a picture of a mother who had it “all together.” Yet, every day the weight of my responsibilities sunk my soul in a sea of overwhelming despair.

community finds me

I did not drown, however, because even though I didn’t seek community, it found me and saved me from isolation and alienation. At first, those who reached out did not have children with special needs but all the same, they empathized with me because every parent has struggles and times they cannot cope. Even when I didn’t ask for help, they offered it because in the real world people have no choice. We are compelled to build community because we are survivors.

two-mother community

So many people gifted me in this way along the way, it would be impossible to name them all, but some folks stand out because they threw a lifeline at a time I might have otherwise disappeared below the raging waters.

First in line are the many young women who took time out of their own life to join our family as second mothers to my children. They made it literally possible for me to get through the day without collapsing. Beyond that, as strong young women not afraid to take on the hard task of caring for children with intellectual disabilities and seizures while at the same time they pursued their own important goals, they provided a myriad of role models for my daughters as they grew up. My heart sings today because several of those women now mothers, even grandmothers, themselves remain in touch with me.

lessons in community

Although our middle daughters, Betsy and Carrie, did not have to cope with intellectual disabilities, they did have the challenge of growing up in a family with siblings with special needs.  My openness to the help of these young women showed them that asking for help is okay, a valuable lifelong lesson.  I have seen as they grew into capable women that they not only know how to ask for help when they need it but they are also very attuned to helping others when they see those people struggling.

neighborhood community

Neither my wonderful mother’s helpers nor I would have thrived as well as we did if we had not lived in the wonderfully tight-knit neighborhood, the Seminary Townhouse Association. Within the heart of Chicago, this enclave of fifty-two homes functioned like a small village. We knew all our neighbors and they knew us.

The neighborhood had long-standing traditions of group festivities that included a bike parade and a talent show. Neighbors welcomed our entire family at these gatherings. These gentle folks understood Kristin and Johnny’s special needs and accommodated them without a fuss. The alleys of the association were more like village streets and in the center of our enclave was a huge green.

Up and down the alleys and over the green, children of all ages played together every day at every hour.  Mothers gathered on porches with mugs of coffee to watch the youngest kids. Jay’s walk every evening from the “L” stop at Fullerton Avenue to our home at the opposite corner of the complex often took him a half-hour because he chatted with almost all the neighbors over their back fences. Only in retrospect, I am able to truly appreciate the emotional protection living in the “Seminary” cocoon afforded me.

supporting the community

Being a part of such a strong community not only created an ongoing sense of support for me, it also made it possible for me to provide support for others. I didn’t need to always be the needy one. I could care for a neighbor’s child after school. Providing meals for a sick neighbor was an ongoing mission for me.

Being a part of the committees that planned our group events let me use my creative and organizational skills. In La Leche League I helped to plan and direct their twenty-fifth-anniversary convention. Because I could see how important these contributions were, they enhanced my sense of my own value at a time when our struggles to find a remedy for Kristin and Johnny’s increasing medical needs had hit a brick wall.

most important community

As the years went by these opportunities built strengths and skills. For which we were grateful when we participated in our most important community, Kristin and Johnny’s adult home, Misericordia.

Exuberant play
Photo by Artem Kniaz

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