I got another story published today so it’s time to celebrate. The story is entitled “The Last Threads of Denial” but there are many invisible threads that still entangle me. I dance around around issues, unable or unwilling to face the truth; I worry whether my story told the whole truth or if I left something out. I write about motherhood, about life, about striving to be a good parent and worry. Mothers tell me they relate to my stories and nod their heads in understanding.
Meanwhile, my manuscript is out there, sitting in a pile with thousands of other manuscripts. Twelve small presses will either be saying yes or no to publishing my book, My recently deceased brother would have been proud of this perseverance. It’s hard to believe he died before our mother. That’s something I will continue to explore in my writing. His enthusiasm and encouragement echo in the silence. I don’t know if he fully understood my experience raising a child with an intellectual disability. His children were high achievers with exceptional abilities. But he read my manuscript and seemed to ‘get’ why I needed to persist. I hear the Beatles song, “Ob-La-Di, Ob-La-Da- …” The next line: life goes on.
Yes, life goes on and changes constantly. My hope is we should all whirl around and dance like Jessica, a girl who celebrates everything. A girl who doesn’t stay down for long. Here’s a photo of her dancing at Tim Tebow’s Night to Shine.
Let me dance with the dangling threads of denial.
Prom time!
The dance party, sponsored by the Tim Tebow Foundation, is better known as the “Night to Shine,” a prom night for people with special needs.
Write City published my story today and I’m beyond thrilled because although it took me two tries, it was accepted. This is an excerpt from the first email I received:
“We appreciate you letting us take a look at this story for possible publication in The Write City Magazine. Usually we’ve got a straight up YES or a straight-up NO, but in the case of your story, it’s mixed. We’d be open to seeing a revised version that addresses some of the editors’ concerns as follows:
One editor was not clear about the reference to “moon-shaped face” and would like you to be more specific about the child’s disability
Another wanted a few more, deeper descriptions
Perhaps the differences between the husbands could either be introduced earlier on, delved into more, or downplayed altogether, because the introduction of the husband’s different reactions felt a bit tacked on to the ending
Something about the ending needs changed. It didn’t hit us with the punch that the rest of the story did. Perhaps you could develop it a bit more, reach some additional conclusions as to why this encounter was important compared to others the protagonist experienced and why it lingered so vividly.
Like I said, if you want to consider our feedback, and resubmit, we’d love to take another look…”
I love a challenge so I revised, edited it another five times and showed it to my oldest daughter, Alia, who also stands in as my editor. This is the first time I will be paid for something I wrote. I am so grateful! If you’d like to read the story, you can find the link under “Publications” in this website.
There’s an important lesson here. I refuse to give up as I learn to do new things. I imagine it’s like learning how to juggle. Hard!
Over a month ago, I flew home from a visit with my daughter, with tentative plans to meet her and her family in South Dakota this summer. We’d visit Mount Rushmore! I was imagining what it would be like when everything changed a few days after I got home.
A month has now passed since we started the self-isolation due to the pandemic. Although Chip says he likes staying home, and he likes being alone, I struggle with not seeing my friends, or going to my writing class, or seeing my grandchildren. For the first few weeks of Stay the F home, I experienced fear, anger, and depression. Any suggestions from well-meaning friends to write about our world pandemic crisis caused further annoyance and gave me a sense of helplessness. So I wrote other stuff instead.
I’m grateful that right before everything shut down, I celebrated my daughter’s fortieth birthday. It was also my granddaughter’s birthday. Year after year, ever since my oldest child moved up north, I haven’t missed a birthday celebration. I’m afraid that might change.
When I flew home at the beginning of March, Jessica wanted to see me. I’d been gone for a week, and she insisted I come get her. I brought her home for the weekend. That was before the world changed.
Each day, the cases of coronavirus grew more widespread. Schools closed, then the parks, then small businesses. Toilet paper was one of the first things to fly off the shelves. Chip and I ran to the grocery store and stocked up on everything we could think of, expecting we would shelter in place for a few weeks. We had to make a decision about whether to return Jessica to the group home or keep her with us. This created more issues that could’ve impacted her services. I couldn’t lose all I had worked to achieve.
Questions abounded. What would happen if either Chip or I got sick and had to be hospitalized for coronavirus? When I flew home on the plane, I sat near someone with a bad cough. No one wore a mask at that point, so I didn’t wear one, but what if that man infected me? What if I were infected but didn’t have symptoms? What would we do with Jessica if one of us had to go to the hospital? She WOULD be better off in the group home, but how long would she have to stay there?
Sarah yelled at me. “Mom, take her back, I don’t know what you were thinking.”
I thought of the weekend when Chip had his stroke when I frantically drove him to the hospital because he wouldn’t allow me to call 911. Jessica sat in the back seat, bewildered. Luckily, I called Sarah on the way to the hospital. She met us at the emergency room and retrieved Jessica as I flew through the entrance with Chip moaning in the wheelchair. I debated what to do with Jessica and pictured that scene over and over again. I pictured one of us rushing to the hospital, sick with this deadly virus. What if we infected Jessica? Who would take care of her?
I called the director of the group home. She told me no one would be allowed to come and visit. Jessica would have to stay there for the remainder of the outbreak. I reluctantly agreed. It was almost as hard as moving her there in the first place. How would she survive? How would she manage if she had to stay there for months?
Today marks one month since we’ve seen anyone up close. We’ve video chatted with friends and family. I asked the group home to install WhatsApp on Jessica’s phone and occasionally, she is able to successfully video chat. With the proverbial sigh of relief, I can relax, knowing Jessica is doing just fine. It gives me a sense of peace to know when I die, she will be okay.
My ninety-seven-year-old mother’s nursing home stopped allowing visitors and families. I saw my mom right before I flew up to Philadelphia, but she wasn’t exactly coherent. A week later, I received a call she had pneumonia. It looked bad. I told my brother he couldn’t fly down if we had a funeral. He was astounded by my suggestion, but I told him, it wouldn’t be safe. Then my mom recovered. If anyone can beat the odds, it’s her. We often laugh about how tough Mom is, how her maiden name, Brick, represents just how hard she is. She’ll probably outlive the pandemic.
But each one of these things has weighed heavily. I needed a distraction. I started drinking wine. Every night. Cooked. Ate cookies. Drank more wine. Every night. Ate more cookies. Every night. I turned my attention to writing. Not writing about coronavirus or the editor who dumped me. No, I focused my attention on my memoir. I contacted new editors. I studied my manuscript, found plot holes, wrote more revisions, joined more writing groups on Facebook, took a free class in revising my novel in a month. Thank you, Martha Alderson!
Today I finished the second round of revisions on my thirtieth chapter. Three chapters left. I already have a few beta readers lined up.
Over the years, I’ve had to deal with enough challenges to fill a lifetime, but I am not going to be a victim, I won’t allow fear or doubt to stop me. This coronavirus has given me a chance to listen to my inner muse. I will do PitMad and research agents. I’ve already started to explore what’s next. Some good has come from this experience.
A few months ago, Jessica said she wanted a job. Rene, her support coordinator, began the process for her. He contacted Vocational Rehab, and after a bunch of mishaps, we got the paperwork completed and started the process. Today, after numerous trips to Voc Rehab, I picked up Jessica at her group home and took her to a scheduled interview at Goodwill Industries. This was supposed to be the 1st of many visits before she could be placed in any sort of job. I decided I would help her since she wanted it. Husband didn’t think it would go very far. I said, “I’m alright with that. After all, I’m retired. I can take the time off to do it & if this is something she wants, I’ll help her. “ We went to the 2-hour interview. When we got there, the job placement specialist, V.S., appeared annoyed when Jessica wandered around and became distracted. She insisted if Jessica WERE placed in a job, she’d have to conform. V.S. had the nerve to tell me Jessica would be better suited to Goodwill’s “Work Activities Center,” a different department, separate from Goodwill and one which required a separate application process altogether. Really? I’m patient but not this patient. She’s a job coach? She pissed me off. I told her about the plan to have Jessica placed in “Phase 2” (which Rene said would be our ultimate goal) The plan- to work with a job coach at the WOW center. Lady dismissed this possibility and argued with me, so I didn’t pursue it. During the 2 hours “interview,” V.S. explained all applicants are required to submit to a drug test. “Goodwill applicants must submit to a drug test within 24 hours of receiving this order.” I asked,” What if I do it another time?” “ Answer? “You will start the process all over again.’ Seriously? We went straight to the lab instead of the WOW center. At the drug testing lab, we waited for 30 minutes to be seen. Jessica did not produce enough urine in the cup (probably because she didn’t know how to pee into the container and was unable to fill it with urine.) and I wasn’t allowed to assist her. We tried a second time. This time she drank tons of water, I gave her a soda,& we waited another 45 minutes before the technician allowed us to try again. Again, she was unable to fill the container. At this point, I was told to “come back and try tomorrow, ” I was so distraught, frustrated, and upset, I started to cry. On the way out, I turned on a clueless Jessica, I swear I could’ve screamed bloody murder, I couldn’t believe how thwarted I felt. The whole process appeared to be a waste of time Jessica’s reply? “Forget it. I don’t need no job.” It ended there in the parking lot, but I thought it shouldn’t be this hard to help a disabled person. I understand Jessica has enormous limitations but this was a terrible experience. The hardest part? It emphasized and stood as a reminder of everything Jessica cannot do or will never do, including peeing in a cup! The support coordinator asked me to tell him what happened – so I emailed him a rehash of the entire thing. At least I got someone’s attention. He called as soon as he read it.
So I had this problem, right? A bewildering experience, in my opinion, and now it’s over, rather barely over, I can talk about it. Or at least provide some details. It has to do with my female anatomy, which I won’t go into detail about. Suffice it to say, I had my bladder sewn back into place and a complete hysterectomy. Two weeks ago today. The diagnosis reminded me of the shock of Jessica’s diagnosis. Unexpected. Unplanned. And unwilling to accept the reality.
Luckily, it wasn’t cancer. Or at least the doctor hasn’t told me they found cancer and it’s already been two weeks since the surgery. Rationally, there’d be no reason for the extreme emotional reaction. BUT I wrote a great story and it is going to be published !! June issue of https://arielchart.blogspot.com
UPDATE: The story was nominated for the 2019 Pushcart Prize!
“I’ll be leaving you behind.” The words I typed out were supposed to be the beginning of another post for my blog. I was thinking about Jessica and all the stories I wanted to tell. Maybe offer a peek into what it was like to welcome all the new babies born into our family, then watch as they grew, then outgrew Jessica. Watching them wave goodbye as they left her behind. I stared at the screen after writing that statement, and realized Jessica wasn’t the one on my mind. It was my 95-year-old mother. Slowly inching her way to the end of her life, she is the one who will be leaving all of us behind. The weight of her story tugs, urging me to give words to her struggle. To tell everyone what it’s like to be trapped in a body that no longer does what it’s told or watch a mind, once sharp and alert, abandon you, leaving you confused and helpless. There is something about the duality of this situation and the things she has in common with Jessica. Things which have always been my normal. Although my mom has never had much in common with Jessica, she does now. She probably wouldn’t like that I am putting her in the same category as her mentally disabled granddaughter. This would annoy her. If she could she would make the disapproving face that has always reminded me of the Wicked Witch of the West. But I’m just telling it as I see it. These days, I have to manage all the aspects of her life, but I’m used to this. Since Jessica was born, this was the role I’ve had to assume. Jessica has always relied on me, so this wasn’t anything different. Just one more person to have to be responsible for. I tell myself I am a good daughter. At least I am devoted. If she deserves more, I don’t have it to give. I wonder if maybe I should feel guilty. I do and I don’t. This is how our relationship was always defined. Distance. So I watch, emotionally detached, wondering what it must be like for her as she struggles with Alzheimer’s. Residing in assisted living at the Palace, she doesn’t remember why she’s in so much pain. It doesn’t help to remind her she has a compression fracture in her spine. She sits in her wheelchair, oblivious to the fact she can no longer walk. She’s developed bedsores. The doctor orders drugs for the anxiety, and an array of other drugs that block the pain but make her lethargic. She barely eats and has lost so much weight, she’s down to 76 pounds. In July she was 89. When I asked the nursing director what to do, she just shook her head and said the staff is trying to get her to eat. I don’t think she’ll live to see her 96th birthday. Maybe she will, you never know. Last week, the nursing director called to tell me about the Hospice decision. Was that what I needed to hear to be nudged into going to see her more often? I went twice this week. A few days ago, when I was there, a man sitting across from Mom had taken off his white T-shirt and was waving it over his head like a soldier signaling the white flag of surrender. Shirtless, he looked right at me and yelled, “Come over here and talk to me!” Frightened by his outburst, I looked away. When he began yelling louder, I tried to ignore him. When Mom was more aware of her surroundings, she had plenty to say about the other residents. I can imagine what she would have said about this guy. Mom would have been embarrassed. But this time, she didn’t notice. The woman next to me quietly lamented, “Oye yoy yoy, oye yoy yoy,” repeating it like a mantra. It sounded Yiddish, a phrase that translates, “Whoa is me.” But she was speaking Spanish. Her plea seemed to represent what everyone else in the room probably felt. The whole scene was a sobering reminder that one day, I would take my place at the table, repeating oye yoy yoy until the very end. Fifteen minutes had gone by, and I stood to leave. The obligatory visit complete, I kissed my mother goodbye. I know she is slowly transitioning to the final exit. She keeps talking about people from her family who are no longer with us. The other day, it was my father, who died over 25 years ago. Yesterday, it was her brother, Jake. He’s been gone almost 30. She said he’d called her on the phone. Maybe the other side IS calling. I just hope that when she goes, she goes in peace. And one of those folks on the other side is there to greet her when she arrives.
Death Writing Peaceful Departure Caregivers Memoir
SMACKED IN THE FACE – is that how I felt thirty-one years ago, when we sat in the cold air-conditioned room, meeting with the specialists, listening as they gave us their “final ruling” on Jessica? Maybe. Yes. It’s an accurate description.
As I worked on writing my memoir, recalling what happened over the years, I realized the things I’ve never forgotten are the emotions I experienced. The struggle. The anguish. The love. As I wrote, I had to recreate and reimagine events but it wasn’t hard to remember how I felt. I guess that’s how I captured it. So now that I’ve finished the book, I’ve decided it should be published.
I’ve written a story millions of mothers can relate to, or at least mothers and parents of disabled children. I see a similarity between my story and the common theme of many of Jodi Picoult’s books -children with some type of disability, families struggling with problems. The determination to pursue getting it published is growing. But first, I have to get noticed. So today’s blog is focused on coming up with an “elevator pitch” for my book. I’m sure some of you are wondering what the heck is an “elevator pitch”? Until I started writing this memoir I’d never heard of it.
So last night, I asked my husband if he knew what it was and of course he said he did. If you know him, you know he knows EVERYTHING about EVERYTHING. (Or just about.) And I mean that in a loving way.
So he says, “when someone is doing an elevator pitch, they are trying to create interest in a project. So you want to do one for your book. A good elevator pitch is short and shouldn’t last longer than a short elevator ride of 20 to 30 seconds, – that’s why it’s called an elevator pitch.”
“Oh wow,” I said, “now I understand. So help me write one.”
I wanted to come up with a killer pitch. I’d love to get some feedback. Here’s what I have so far.
My memoir, Another Side of Normal, begins with a life-changing detour after I am told that Jessica, my four-year-old daughter is “retarded” and will never grow up to live a normal, independent life. Filled with anguish, I use denial to resist accepting this reality until eventually, I do. The story begins when Jessica is twenty-eight and moving into a group home. Here is an excerpt from the book: “This was not how I planned her life. It was supposed to be entirely different. Without a map to guide me, it’s been a difficult journey to navigate. In the back of my mind, I can still hear the doctor’s words. His voice remains embedded in my mind like a permanent recording. ‘Your daughter Jessica is profoundly retarded.’” Perhaps the most captivating aspect of my story is the way I illustrate my daughter’s unique speech and curious mannerisms. My target audience would be adult women, mothers and parents of children with disabilities. At approximately 84,000 words, Another Side of Normal is reminiscent of Rachel Simon’s Riding the Bus With My Sister.
Catherine (Cathy) Shields writes about parenting, disabilities, and self-discovery. She is a retired educator with an M.S. Ed in Exceptional Education. Her experience includes networking and dealing with children and families of persons with disabilities. Cathy and her husband reside in Miami, Florida, where they raised three grown daughters. They kayak, ride bikes, hike in the Everglades, and visit the two grandchildren who live nearby.
