My character MaryEtta’s name was a challenge and caused conflict in the lobes of my brain. The left side said, “Make it simple, spell it like the city, Marietta. The right brain said, “There you go again, dull and unexciting. Let’s give her a double name that’s spelled kinda cute.” The right brain won but what a pain! I stuck the names together because my nail tech did hers that way, and I thought it quirky and cute. I couldn’t get out of that MaryEtta stuff soon enough. So, Etta finally surfaced as a single name on her 13th birthday at dinner.
Now, an ode to my sister whom the character Etta is based on. Imagine never having a friend, a date, a party to attend, a secret to share, a giggle at spend-the-night parties. Add to that bullying and teasing over the shape of your body and that was the life of Etta DeRenne and my sister Susan.
The muse who resides on my shoulder, plugged Susie into the story and took me on a roller-coaster ride. I described the heartache called my sister, in a state of melancholia and frustration which I struggled with throughout my life. I wrote a poem about her in college because I was aware- even then- of the rejection she suffered. I watched her navigate a road less travelled, a road so bumpy and thorn-infested that the average traveler would give up and mire down in a pool of self-pity. She never did. I titled the poem The Malady, innocuous sounding because there was no medical explanation for the swelling that distended her legs and upper arms. Oddly enough, while travelling through Minnesota over twenty-years ago, I picked up a newspaper and read about a hideous condition known as Lipedema. Susie had all the symptoms and unfortunately, there was no cure – only maintenance. I gave Etta a different ailment to make the story work.
Atlantans are familiar with the area in town known as Benghazi, oops, I mean crime-ridden Buckhead, once a chic little enclave filled with boutiques, restaurants and trendy shops. Susie had a condo in the heart of Buckhead, and since she didn’t drive, she was ubiquitous as she pushed her grocery cart across busy intersections and in and out of shopping malls. She walked in the heat, the rain and occasional ice storm. Sometimes she was shopping for food, other times she used her cart for balance when she travelled to the doctor or dentist. She had her pride and didn’t want to appear helpless by using a walker or wheelchair. She slogged around with a smile lugging her enormous legs, and she trained herself to ignore the jeers. I once had an acquaintance call me laughing to say, “Hey, I was just cruising through town with sfb (shit for brains) and I saw this fat chick walking through Buckhead and he told me it was your sister! Hahaha, I couldn’t believe it. Where you been hidin’ that one?”
I was so devastated by the cruel remark my rapier wit failed, and I simply hung up. Eventually, I recovered from the insensitive slur describing Susie, and a punishment was meted out. I told every woman I knew that the offender was called “squeaky” in college because he lost his business in a horrific bicycle accident in grammar school, and his voice remained a soprano. He was left with something like a red wiggler, but at least he could have joined the Vienna Boys Choir into adulthood. The subject came up whenever a group of women gathered, and I had the chance to speak. The laughter soothed my soul, but still I ached over my sister exposed to such taunts. She heard them often, and like Etta, she went inside herself and ignored them.
Susie, or Aunt Susie as her nieces and nephews called her, passed away on the second day of recording the audio version of my book. It was unexpected and in my world of fantasy, I imagined it as swift and painless. But I couldn’t ignore that she died alone, the same way she had lived. It just so happened that I was reading a section of the book where Etta figures prominently. Susie’s crippling health woes and pitiful lack of a social world flashed through my mind with every sentence I uttered. Visions of her lumbering through crowds struggling with balance and dignity crept into my head. I saw her faux laughter and scripted joy that she borrowed from someone else. But I concentrated on my written words. They cushioned the memory of my youngest sister because I realized I’d created a new world for Etta, and it’s the way I wish Susie’s had been. Thus, the margins of truth and fiction became blurred.
So, when you read about Etta, I hope you will admire her strength, sympathize with her pain and rejoice over her victory.
Oh, quick aside. A beautiful woman named Shawn Bigby is known as the Lipedema Mama on Instagram. She is a wealth of information about this strange attack on the lymphatic system that causes such pain and swelling in the extremities. She is in Madrid now going to a specialist who treats this hideous disorder. Please follow her as she goes through the process. I prayed for so long to find a treatment for Susie, but there wasn’t one. Doctors took one look at her and said, “You’re fat.” How ironic that following her death, awareness of this disorder is being recognized and compression garments are being sold for “swelling.” At one time it was reported that 10 million men and women suffered from lipedema. It can be managed and support groups are out there. If you suspect you have this affliction, follow Shawn on Instagram @the_lipedema_mama and talk about it! Many women hide in shame, please don’t.
Kathy Lilly of the Valley MaryEtta (Video)