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

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