Some Sneak Previews

Jule and Johnny in the yard

For the last eighteen months, I’ve been inviting you to come along as I struggle to write a memoir. The memoir focuses mostly on the challenges and special joys of parenting my two children with disabilities. But I cannot isolate those experiences from the rest of my life.

I must, however, limit the number of pages-and, therefore, the number of tales I tell. Twenty original chapters slimmed down to twelve as I came close to the final version. So, some of those tidbits will appear as blog posts here on “Jule Ward Writes.” As the final version of the memoir shapes up, you and enjoy these vignettes. Maybe they will even whet your appetite for reading the book when I publish it.

To Be A Dolphin

“When I grow up, I want to be a dolphin,” my three-year-old son stated emphatically as I read him a picture book about adult occupations. Me, too, I thought, oh, me too!

Although thirty-eight years old and the mother of four young children, I still wondered when I would grow up. When would my real life begin? Could I possibly wake up and this nightmare I had stumbled into be over? I hugged his sturdy, warm body against my chest, rested my chin on his soft curls, and gazed into our little side garden. His sisters would return from school in an hour. From then until bedtime, a sort of low-key chaos would fill our old Victorian rowhouse. And that was the best-case scenario. That was if no one–not me, not my little boy, and not his oldest sister Kristy had a seizure.

epilepsy reality

If one of us went down, the chaos spiraled down into pandemonium. All other activity ceased. And God help us if there was soup boiling on the stove or a bathtub filling with bubbles. That couldn’t matter. First, turn the seizing person to their side, so they didn’t choke on their own saliva. Then, slip something soft under their head to avoid nasty bruises, and grab a clean towel if they were bleeding. Next, loosen their clothing so they could breathe a little easier. And wait. Wait until their limbs stopped flailing, their eyes returned to the center of their sockets, and their breath slowed to a more normal pace. And wait some more. Wait until they could get to a chair or bed to rest and come back to us, wake up, confused and sleepy, but ultimately fine. Or so we hoped.

On this autumn afternoon in 1980, my toddler son and I squeezed together in a singularly uncomfortable mesh and metal lawn lounger; his chubby legs anchored mine in place. A dozen large, hardcover books covered our laps. Johnny’s favorite, “Oh, What a Busy Day!” lay open to a page where winsomely drawn children imagined themselves as doctors, ballerinas, sailors, chef, and other sundry paying occupations. Clearly my son found the imagination of the illustrator quite limited as he announced, “When I grow up, I want to be a dolphin.”

never grow up

I nuzzled my nose into his yellow gold curls and thought, “And why not?” Deep between my heart and lungs lodged the certainty that evolving into a sea creature might be the only way I could keep from drowning in the reality of my everyday life.

I lived my here and now as a bizarre paradox. To an outside observer, it would seem I lived the life of a typical late twentieth-century middle-class, stay-at-home mom. Yet, every day, I woke up in terror that I lacked the resources to fulfill my role.
An illusionist, a trickster, I pulled coping mechanisms out of my ringmaster’s hat, creating a chimera of a brave, but beautiful life. I may have wanted to cry out, “I’ll never make it out of here alive,” but I said, “I’ve got this. It’s not that different from anyone else’s life, not really.”

brave front

My false optimism persuaded far too many people that I didn’t need their help, didn’t want their solace, would hate their compassion. There is no such thing as “normal,” I convinced myself. Everyone’s life has challenges. Everyone had to cope. I never wished to be someone else, to have a different life, to have different children. Rather, I yearned to live this life with as much savoir faire as everyone thought I did.

“Earth to Mom.”

Oh my God, the girls were home from school. I hadn’t heard them come through the back gate. Johnny had drifted to sleep in my arms, undoubtedly dreaming of dolphins.

“Kristy’s bus will be here soon, Mom,” Carrie’s voice broke into my reverie.

I carefully slid Johnny’s plump, warm body onto the chaise lounge. “Stay with him. I’ll go meet the bus and then we can have snacks.”

Back to reality, whatever that was.

 

 

Life Comes Full Circle

Israeli rooftops

My favorite guest blogger, intrepid world traveler, Nancy Louise, shares a favorite story with us this week.

a half-century ago

Fifty-one years ago my newly minted husband, and I took off on a month long round-the-world honeymoon courtesy of a Trans World Airlines interline rate of $98 each!

I had been working in the airline industry; my husband, Frits, was working for a tour wholesaler designing tours to Europe and the Middle East.

Our third stop on the journey was Israel. I had traveled a bit in Europe… but this was my first time to venture further. I was 24 years old and having grown up in the Bible Belt of the South in the US — I had never even met a Jew — much less a Muslim. Or a Palestinian.

overcoming naivete

My entire “understanding” of Israel was based on Leon Uris novels and gorgeous Paul Newman playing the lead in the movie, “Exodus”.

Frits had a business contact, Emil, in Israel and had written him (yes, an actual letter in the mail!) asking him to make us a hotel reservation. We arrived in Tel Aviv on New Year’s Eve of 1971.

Emil was there at the airport to meet us. He informed us we would not be staying at a hotel. We were going to stay with his family!

Emil lived in Jerusalem near the top of the Mount of Olives (next door to the Papal delegate). We pulled into his yard, which overlooked the Old City just at midnight as the bells of Churches pealed out the New Year. It is a treasured memory.

We stayed five days with Emil and his wife,Um Hani Abu-Dayyaeh. Emil gave us our own private tour guide, driver and car with Palestinian license plates. It was an eye-opening experience. Our guide, Mohammed, was a Palestinian Muslim who knew the Christian sites and their meaning better than most Christians did. With our Palestinian license plates, the Israeli military stopped us every half hour for “security” purposes. Mohammed also had to caution us frequently on taking photos of anything thing or person who could be construed as our “spying” on the Israelis. We were quite oblivious.

Emil and Um Hani also took us to a Palestinian Refugee camp—a sobering sight that I would never forget.

struggle to survive

In the evenings Emil and his wife shared with us their lives and struggles to live in a country that had been Palestine when they were born—- and was now Israel. Emil had sent his two sons to study in the United States to keep them out of the constant conflict between Israel and Palestine. That had been a painful decision, but one he felt necessary for their safety.

The family had lost everything in 1948 and again in the “Six Day War”of 1967. In January of 71 when we visited — Emil was unsure if his once more struggling tour company would survive. He and his wife were Christians—Lutherans — specializing in Christian Pilgrimages. And tourism hugely depends on the stability of the country.

Frits continued to work with Emil for the next two years, but then we moved from Michigan to Chicago, Frits joined KLM Airlines, and we lost contact with Emil.

many returns but no re-encounters

Over the years I have returned to the Holy Land a half dozen times mostly as a Tour Director, which allowed me no private time to hunt up the Abu-Dayyaeh family.

Now retired, I thought I had done my last tour of Israel. I was, however, persuaded in the summer of 2022 to join friends through Loyola University to come back for one last visit—a full-fledged pilgrimage.

Our itinerary was to include a dinner with students from a Palestinian University and a group of Palestinian Lutherans. My thoughts went back to that first trip and Emil and Um Hani. Their first names were the only ones I remembered. I thought, “How big could the Lutheran Palestinian community be in Israel?” I knew Emil had most probably gone “home to God” by now. It had been fifty-one years ago—and Emil had been well into his 50s when I met him. I wondered though if anyone would remember this hard-working, dedicated man and his family. So I texted Frits and asked him for the name of the fledgling company that Emil had started. Frits responded, “Near East Tours”.

an extraordinary coincidence

I was standing beside my tour bus when I got the text. And there in BIG letters on the side of the bus were the letters “NET”. I went up to our driver, Haseem, also wearing a shirt emblazoned with “NET” and asked him if “NET” stood for Near East Tours. He replied. “Yes it does!”
“And was the founder named Emil? ”
Haseem confirmed that Emil’s company was now owned by the two sons. One son, Hani, would be at the dinner that evening.

Hani and I had dinner together at our special gathering that night. I regaled him with my memories of that first Holy Land visit courtesy of his family—and how that eye-opening journey profoundly impacted my life and would lead me to be involved for many years in Interfaith endeavors with a group called “Soul Space,” of Jewish, Muslim and Christian women — with a mission of sharing the commonalities of our faiths through mini-retreats.

Hani informed me that his Mom, Um Hani, was still very much alive. Indeed, she had worked every day in the office until Covid hit! And at 96 she still lived independently in that same house where we had stayed.

full-circle experience

I asked Hani if she was still up to having visitors. I wanted to thank her for that life-changing visit so long ago. He called her there and then… and the next afternoon our driver, Haseem, took me in his own car up for a visit. When Haseem dropped me off, I told him I would probably only be a half hour. After all… she was 96 years old! When he returned… Um Hani had barely gotten started! Haseem joined me — and we sat riveted, listening to the stories of the very long life of this remarkable woman. Near East Tours had not only survived — it had thrived — expanding throughout the Mediterranean — to such places as Greece, Turkey, and Egypt.

It has been a “full-circle” life event for me. My first… and what for sure will be my last visit to the Holy Land impacted so much by this wonderful family.

I have long treasured these words from Mark Twain: “Travel is fatal to prejudice, bigotry, and narrow-mindedness” That journey was my first proof of Twain’s truth.

Over the years, Nancy’s friends and family have urged her to record her experience as a memoir. She has had so many, she feels she doesn’t know where to start.  I think the theme of “Then and Now” could be a wonderful organizer for her writings. Let us know in the comments if you agree.

Writers Need to Be Heroes

wonder woman illustration
silhouette of mountain under night sky with stars
Photo by McClain Crigger on Pexels.com

An Author’s Dark Night of the Soul

If one imagines a hero’s journey for authors, then your dark night of the soul is probably when no one believes in your work except yourself.

Jane Friedman <jf@janefriedman.com

Coming to the end of a first full edit of the memoir I’ve been writing for two years, I spiraled down into a dark night of despair. Who but me believed in my projected book? Was I my only audience?

In her blog, Electric Speed, Jane notes writers can fall prey to the temptation to internalize the “NO” they receive from editors or publishers. (Jane Friedman, August 5, 2022)

I have found one can also internalize the critiques that one receives from fellow writers, those colleagues you ask to access your work.

a sign from the universe?

If we treat that “NO” like a “sign from the universe” that our work doesn’t make the grade, our life as a writer can end right there. A chance encounter or an unexpected opportunity could reverse your fortune, but that’s not the likely outcome. What we need is the more straightforward solution—turn up the volume of your dedication to your work.

Straight forward, yes. Easy, no.

For that reason, Friedman suggests authors think of this task in terms of a “Hero’s Journey.” What is a “Hero’s Journey?” It’s a literary device that breaks a character’s story arc into discernable steps with a probable outcome. The journey typically has twelve steps in three acts. (Thirteen Step Guide to the Hero’s Journey)

If my writing struggle follows this arc, what would that look like? Here’s how I imagine it.

Act I—The Departure

Step 1The Ordinary World in which the hero is living their everyday life oblivious that they are called to something bigger. For me, I was retired and finally had the time to write I had dreamed about for years. I crafted two novels, several short stories and started a blog.

Step 2–The Call to Adventure: An incident transforms the hero’s life with a sudden jolt. As a member of several writing workshops, I read and edited memoirs for colleagues. The more I worked with these manuscripts, the more I knew I had to put down my other writing. I had to memorialize the lives of my two extraordinary children.

Step 3–The Refusal of the Call is where the hero doubts her abilities to accomplish the task. There seemed to be so many reasons this story couldn’t be told. It covered too many years. It was too complex. The mystery that shrouded it would be difficult to unveil.

Step 4Meeting with the Mentor: There were multiple mentors in my life. Friends and writing colleagues, as well as family members, all urged me to write this book. My Wanderer’s Writing Workshop colleagues promised to read and give advice through every step of the process.

Step 5Crossing the Threshold: Ready to head the call. The hero sets out on the journey.  As best I could recall, I wrote a chronological record of what had transpired during Kristy and Johnny’s lives. Then I constructed an outline on which to base my writing.

Act II – Initiation

Step 6Tests; allies; enemies: This is a long beginning of the adventure when the protagonist finds all their abilities stretched, discovers some new allies, and encounters expected enemies. I started the memoir in many places and gave it different emphases. Nothing seemed to work. New colleagues agreed to read the work. I took two memoir-writing classes, which both taught me techniques and bolstered my confidence. My memory and my self-confidence were constant enemies, begging me to give up this arduous task.

Step 7Approach to the inmost cave: Here, the hero faces the genuine challenge. It’s the call to the ultimate battle. In December, 2021, I finished a complete draft, seventeen chapters! It felt like such an accomplishment. But it was only a “vomit draft,” that is everything I had in me about our story. With the new year, I faced turning those thousands of words into a well-paced, page-turner that someone would want to read.

Step 8The Ordeal: This is the moment of truth where the hero dies, even if metaphorically, and must be reborn. For the last eight months I’ve “killed my darlings” as the jargon goes in the publishing world. With each part of the memoir that I chop from the final draft, a part of me goes with it. My hope is the final product will be a true rebirth.

Step 9The Reward: The hero has achieved a major success. When I finally believe that I have edited my manuscript to where it can be offered for publication, I’ll have reached this step. But I’m not there yet.

Act III –Return

Step 10The Road Back: The Hero returns home with the reward. Once I have what I am convinced is a publishable work, my journey will be to decide whether to self-publish or offer the memoir to a traditional publisher. Either of these will be a long, painstaking trek, but I’ll be buoyed up by having finished the manuscript.

Step 11The Resurrection: The hero faces a major threat, often the threat of death itself. For me, this would be if they published my book, and no one buys it. I know absolutely that getting it out there will not be enough for me. I’ll need the affirmation that someone values it enough to pay for it.

Step 12The return with the Elixir: After this, the hero is no longer the same. The challenge has been successful. Death is beaten. If my narrative fulfills its intent, others will understand what rich and meaningful lives Kristin and Johnny led. The meaning of their lives and mine will endure even when I die.

 

 

brown pendant lamp hanging on tree near river
Photo by Rachel Xiao on Pexels.com

Am I Writing a Best Seller?

low light photography of books
Photo by Suzy Hazelwood on Pexels.com
a thought-provoking question

In her most recent email to fellow writers, my friend, and colleague, Erin Donely, challenged her readers with the question,” Is being a ‘best seller’ the best idea?”

“Every book reaches a critical juncture in its development,” Erin states, “when you must decide: Do I want this book to reach the masses, or does it serve a more specific audience? It’s hard to know at first.” (Erin Donley, erindonley@erindonley.com. July 29, 2022.)

Erin emphasizes that authoring a book about your life can be – terrifying, traumatic, and cathartic. But if you aren’t clear about what you are doing, the whole project will turn into a major burden.

You must be clear about two major aspects of your memoir. What is its purpose? Who is its ideal audience? The answers to those two questions will give a memoir its direction and its organizing principles. Without them, you have nowhere to begin because you don’t know where you are going.

have a higher purpose

To ensure that your book serves its highest purpose and reaches its most ideal audience, Erin suggests, you need to ask yourself why should this book be written. Who will benefit from reading these words? And most importantly, what do I need to get this work done?

Answering these questions correctly, she promises, will “set you free.”

So, I challenged myself to answer Erin’s questions, to fill in her blanks.

Starting with the question, “Who needs to see these words beside me?” I formulated the following.

“More than anyone, I want all the people who supported me as I cared for Kristin and Johnny, my two extraordinary children, to read it as soon as it’s available to them. Every one of them needs to know what their strength and caring meant to me and to my children, how they sustained me and kept me going when I thought I’d never make it, and how much I will always thank God for bringing them into my life.”

These helpers and supporters were family members, friends, neighbors, teachers, care workers, and other parents of persons with disabilities. Like angels, there always was “someone,” just the right “someone” for the moment. I know they won’t all find themselves directly referenced in the memoir, but I hope they pick up the vibes of gratitude that the book will carry.

all parents need to know

In speaking directly to those who upheld me throughout my children’s lives, I hope to speak indirectly to all parents. Raising a child, any child, from infancy to adulthood, is a challenging task and they don’t have to go it alone. We all need support. Hopefully, parents hear me say, “Open yourselves to help whenever it’s available.” I didn’t do that as often as I should have.

When I envision speaking directly to this audience, Erin feels confident that I’ll set my book free – “from having to do the heavy lifting that commercially viable books require.” I can draft our story without seeking expert advice about my children’s medical conditions and without comparing my book to others on the same topic.

the toughest question

That leaves me with Erin’s last and very central question, “What do I need to get it done?”

At this point, the whole story is there – all twenty-seven chapters of it! You’re right. You don’t want to read twenty-seven chapters and I don’t blame you. I am working hard to hone it down to ten succinct chapters, following the advice of one of my other mentors, writer, Ellen Blum Barish (http://www.ellenblumbarish.com/). She suggested last fall that I pick a number and stick with it. “Your instinct for an important number can be a true guide,” she assured me. She also said, “Find the stories that make Kristin and Johnny ‘Pop off the page.’” I’m trying to do that. Johnny adored everything Seuss and would have loved her advice.

Another respected mentor Marian Roach Smith (https://marionroach.com/)has helped me seek “the turn for home” like a good racer. I’m doing my best to keep pace. The memoir is not a never-ending story. It’s coming closer every day to being a finished project.

Thank you, for hanging in there with me.

 

 

 

 

 

 

person using typewriter
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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

You Need a Cosmic Graph

view of countryside under evening purple sky
An Author’s Idea of Hell

No one publishes the first draft of any piece of writing. At least, they shouldn’t. Not if the writer wants to be read.

Rewriting makes their work better. Important truths get honed. Images brighten and sharpen. Your ideas begin to POP off the page. Rewriting is also the author’s hell!

if only this was it!

That first draft – the vomit draft – it just spills out. Sure, it’s challenging work sitting down at the computer day after day, mining your memory and your research for the information you need. Then constructing those thoughts and facts into a literate narrative. But it’s honest work – like solving math problems. Simple. You put in the effort. You spend the time. You get results. But for the solution of the problem to mean anything, people need to be able to use the answer to solve concrete problems, not just abstract mathematical ones.

there’s a problem?

Even before we come to the solution, in fact, we need to identify the problem. That’s where a memoir must begin, and it is most likely not where the vomit draft begins. As an example, my draft begins with s school director calling Jay and me home from a Florida vacation to manage a family emergency. Nowhere in that first chapter do I identify the seriousness of the challenges facing our family. Nor do I let the reader know what a rare thing it was that we were on a vacation on our own. I simply started with an interesting scene (at least to me), but I don’t really name the problem. I don’t identify what is at stake.

In the final stages of editing my memoir, I need to become relentless. That will require four to five rewrites. Each time the argument will be stronger and the universal appeal more engrossing. By the end, useless adjectives and adverbs, overly long sentences, and awkward phrasing should be gone.

razzle-dazzle

Those are, however, the last parts of this memoir-writing journey. Long before I arrive at that point, I must reconstruct the overall project, break down the “vomit draft,” mine it for its best parts, lay them out like a deck of cards, choose the best, and rearrange them for the best impact. One card must be a dazzling opening scene that leads immediately to the next one, but also ultimately to the final scene of the book.

a cosmic graft

Close on the heels of this opener needs to come, what Marian Roach Smith calls my “Cosmic Graph.” This is the moment where I, as a writer, pan back from the moment like a camera pulling off into the sky. This must show up by the fourth paragraph of the first chapter. It contains four elements: what the memoir is about, what’s at stake, what’s up in the air, and what values I need to learn or acquire.

I try and try to do this, but conciseness eludes. Wordiness dogs me. But without a Cosmic Graph, I cannot chart my way through the morass of material I have accumulated. Still, my star vision blurs.

adjusting the telescope

Help, however, is on the horizon. I signed up for and took Roach-Smith’s “Constructing Your Memoir” class. What I learned there helped blow away the clouds that obscured my vision. It turned out I had used the wrong lens. My focus was out of kilter, but I didn’t yet know how to use the telescope. The class gave me more of the skills I needed. A new beginning and a new ending for my story emerged. I began to lay the cards out in patterns that worked together.

it’s only just begun

Piles of cards remain in the unshuffled deck, but increasingly of them are making their way either to the recycle bin or their deserved place in the structure of the memoir. The next blog post should be able to let you know if I’ve discovered my Cosmic Graph. But I’m paying attention to Roach-Smith’s warning that I may have to rewrite the introduction over and over as the ending unfolds itself. In the words of my dear friends the VanderVoorts, “We’ll know more later.”

himalayan salt lamp near laptop on wooden table
Photo by Andrea Davis on Pexels.com

The Vomit Draft

brown and white bear plush toy
the end is just beginning

Last month, both on this blog and on my Facebook page, I bragged (and there’s no way to put a kinder word there) about having completed a draft of my memoir. I felt darn right proud of that “accomplishment” because I had attempted to complete a memoir four other times and never got to “The End.”

Then I read Marian Roach Smith’s The Memoir Project in which she firmly states, “self-congratulatory is very bad.” She would add that this is especially true than when one is talking about a “vomit draft.”

My husband gagged when I used that term. “That’s a terrible thing to call your demanding work,” he told me. But I really get what Marian is saying when she writes, “It’s called the vomit draft because it will both sink and be pretty much everything you’ve got in you.” (p. 86)

digging deep

Writing a memoir, I’ve discovered is like mining for diamonds. Before any actual mining even takes place, prospectors need to locate the diamond sources first. If I choose to write a memoir, I hope will be worth reading, my first step is exploring my life experience to determine whether there may be sharable value there. Do I have something to offer readers that will enhance their lives?

man in orange polo shirt and blue denim jeans sitting on brown wooden round stone in near on on on
Photo by Sheku Koroma on Pexels.com

Anything and everything are mine to explore. But just as diamond seekers often follow second sources that never lead to “pipes,” or deposits where the diamonds will prove true and profitable, not everything I dig up from my life belongs in a memoir. I need to locate a primary source.

When prospectors are certain they have found diamonds, shanks are inserted into the ground at the ore-bearing “pipes” and vast amounts of soil are extracted. I knew I wanted to write about parenting my children, especially my two children with an extraordinary neurological disorder. That, however, covered forty-five years of my life. As I dug into my memories I retrieved copious numbers of incidents, funny, sad, delightful, challenging, discouraging – piles of memories.

the wheat from the shaft

Diamond miners typically do not examine the raw rock and soil on-site. Instead, conveyor trucks transport the composite to special plants which process the ore and extract the rough diamonds. This is where I stand in the memoir-writing process. My “vomit draft” is the huge pile of rock and soil from which I need to extract the “rough” diamonds. What pieces of the narrative I’ve captured on the page can I dole out in the final story? What have I learned that I can share in a meaningful way? Which of the “rough” diamonds, I sort out of this pile now, will work to build an argument for me, one built upon what I now know about the human condition because I lived this life? Which of these scenes best illustrate what I learned?

shallow focus of letter paper
Photo by Suzy Hazelwood on Pexels.com

In diamond mining, there is no assurance of fortune. Three hundred tons of ore might be sieved just to produce a single carat of gem quality rough diamonds. I may have written 100,000 words. It would be fortunate if a third of them are still standing when I finish my work.

not there yet

Even after extraction, the rough gems are a long way from the jewelry store. In heavily secured facilities, workers sort rough stones into various gem-quality categories and industrial-specific grades. To get from here (staring at my “vomit draft”) to there (the finished manuscript) is mind-boggling arduous work. Each paragraph even of the “rough diamonds” needs to be reevaluated. Is it necessary? Does it help the argument? Did I make the same point elsewhere? Am I falling asleep? If I am, so would my reader would be. Does this sentence help to show that I moved forward? If not, either it shouldn’t be there or it needs to explain the stagnation. Not until I’ve evaluated the “gem-quality” of each scene can I feel free to move toward the next draft.

brightly shining

In the ultimate step of its violent transformation from rough stone to exquisite gem, the roughs are sold, cut, polished, and commercialized. As I work toward a final draft, I’ll be doing four or more cuts. Are my sentences overly long? Break them up. Have I used a phrase where a single apt word would work much better? Did I just skim over that sentence? Get rid of it. To shine as brightly as an engagement diamond, this memoir needs to be perfectly cut and polished. It’s a long and violent transformation process for “gem,” but you wouldn’t give your beloved a diamond straight out of the ground. And I don’t dare offer you my vomit draft.

“Parents would be much better off if, like defense attorneys, we knew the answer to the question before we asked it. Except we never do, which makes a very nice place to write from.” Marian Roach Smith, The Memoir Project. 

a child playing with her mother
Photo by Barbara Olsen on Pexels.com

Christmas: Lost & Found

Our 2021 Christmas tree
Best Laid Plans . . .

A holiday-themed blog post was the last thing on my mind when I planned my post for this week.

In keeping with my blogging premise for this year, I had intended this week’s post to continue chronicling my journey toward writing a memoir. In fact, this would have been the triumphal post in which I announced that I had finished a complete draft of the memoir after five separate attempts.

Versions one through four next got past ten chapters, but now I had finally pushed through to the end of the narrative. Yes, I would admit, the really challenging work came next – “Killing my darlings,” the dread of every writer, but a particular horror for memoirists. Her “darlings” are real people and the way things “truly happened.” Unfortunately, that by itself does not justify putting them in a memoir. Time to edit. Now, however, I had an actual document to edit.

This time, last year

Before I could begin that worthwhile endeavor, however, our family Christmas fell apart. It feels so much worse than last year. For months before it arrived, we knew that Christmas, 2020, would be a “no show.”  As elders, isolated from the world at large and our family, in particular, my husband and I convinced ourselves that Christmas for just the two of us could be “romantic.” We lit the fireplace, dimmed the lights, and exchanged gifts (okay, I gave him a gift; Jay is not that good at gift-giving and usually relies on the kids to fill up my stocking.).

At mid-morning, we tuned in to the Portal and had an “online” Christmas exchange with our children and grandchildren. We felt grateful for the technology that brought their faces and voices to us – if not their presence. We then settled down to watch “Mary Poppins (the original one) on television, a movie we had first viewed on our honeymoon. As we turned out the lights that night, we congratulated ourselves on making the best we could of an unbelievably tough situation and went to bed convinced that Christmas, 2021 would be a much better and more traditional experience.

deja vu, all over again

It should have been, but it was not. Our daughter Betsy and her family arrived in Portland from Boston a week ago Monday to join her sister Carrie’s family as well as my husband and me for a week of Christmas celebrating. A small cloud hung over them as they arrived. Our grandson Bryce had only just found out he had been exposed to Covid-19 the night before.

Our daughters immediately canceled plans for a full family gathering until Bryce could be tested three days after exposure. We all were sure he would be negative, but the theme of “keep the elders safe” prevailed. Our certainty was ill-founded. Bryce did, indeed, contract Covid. He had to isolate himself from the entire family. Even worse, because they had all been with him until his test, our daughters, sons-in-law, and granddaughter now felt compelled to avoid contact with us.

the breaking point

To add a cherry to this unsavory sundae, they also begged us not to go to church. Being able, this Advent to celebrate the sacred season once again with the community of faith had been a boundless joy. Now, once again, we must remain at home even though our parish would be celebrating three Christmas Eve masses. Isolation is a terrible scourge for seniors in our society during the best of times. During this pandemic, it has wracked havoc with our mental and emotional well-being to the breaking point.

In August, Jay and I lost his brother to the pandemic and could not at that time have a memorial service. Now once again we were losing the rituals and traditions that sustained us. It was hard to find a reason for rejoicing. But God did not abandon us. When I sat down to write this post, Misericordia, the home that cared so well for our disabled children for years, sent us a message.

o come, o come, emmanuel!

Father Jack’s would have Christmas Eve Mass at the Home broadcast that evening. Jay and I could join an important part of our family, the folks at Misericordia, to celebrate the essence of Christmas, the birth of Jesus, the coming of light and hope into darkness, a light that shines as brightly tonight as it did over 2,000 years ago.

“Any one thinking of the Holy Child as born in December would mean by it exactly what we mean by it; that Christ is not merely a summer sun of the prosperous but a winter fire for the unfortunate.”

The New Jerusalem, Ch. 5https://www.churchpop.com/2014/12/03/g-k-chesterton-on-christmas/

jesus christ figurine
Photo by Jeswin Thomas on Pexels.com

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.