Welcome to the World of the Outliers and the rest of us

Staying Positive

Ever hear that phrase, “Stay positive?” Wondering what exactly that phrase meant, I decided to look it up. Here’s the definition:

“Staying positive means accepting the fact that you’re in deep trouble and working towards a plausible solution rather than just sitting and crying over the fact that you’re in deep trouble.”

It all started this evening when I got another rejection letter from a literary journal for a short story (actually I submitted the first chapter of my book as a short story.) This strategy seemed like a good idea. It’s about the day Jessica moves into a group home and the emotional turmoil I experienced as I went through this experience. Within this same story, I have a flashback of when the doctors at the research center for child development said she was RETARDED.  We all know the use of the ‘R-word’ is not only contemptuous, but it is archaic, politically incorrect, insulting and generally, a word that should be boycotted from our vocabulary.  BUT in 1986, in a small conference room in Miami, as my husband and I sat in front of a couple of doctors, that’s exactly what was said. So a short story about this scene should be interesting or could be interesting if I was any good at writing.  My decision to use that chapter as a short story was a genius idea, right? It had the human interest element and addressed the issues of inclusion. Perfect, right? Nope! I’ve already sent this story or versions of it to fifteen different contests and journals and so far, (drum roll please) – I’ve had a total of six rejections. I am probably going to have all fifteen rejected. So the bottom line is nope, I am NOT in deep trouble. I just have to stay positive.

#writer #author #reading #stories

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Thank you but no thanks…….

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Photo by Pixabay on Pexels.com
I got another rejection letter today, this one from Woodbine House, a publisher devoted to stories about special needs. Back in August, after learning they were accepting submissions, I sent a book proposal and several chapters. I expected to hear from them any day. What I didn’t expect was the editor actually wrote a letter explaining why she couldn’t use my story! This was a good sign. Most rejection letters never come with an explanation, but this editor took the time to write! At the top of the page, under the company letterhead, was the form letter:

Dear Author,
Thank you for your submission. I regret that it does not suit our needs at the present…..blah, blah, blah -basically, ‘thanks but no thanks’, and then this hand written note:

“Your writing is very parent friendly, engaging and insightful but I’m afraid we would not be able to reach the market with your memoir. More and more, we are finding that it’s nearly imposssible to succeed financially with any sort of memoir, perhaps because so much autobiographical writing is available for free on the internet. We have an especially difficult time marketing books that deal in any way with the adult years, for whatever reason…..You might try self-publishing and then if you succeed in attracting readers, you could approach a larger, traditional publisher with a proven record of sales.”

I guess I could have been upset, but it made me happy that this editor wrote to me with advice. At least I had some feedback about my writing. I think I will give myself two years to query agents and then maybe I will consider self-publishing on Amazon.

#literaryagent #writing #publish #strugglingwriter

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Write Me

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The twins @ 2 years old

So I went to the Florida Writers Association conference last weekend. I met lots of other writers, rubbed shoulders with publishers and agents and generally kept hearing people talk about books they published. Except almost everyone had paid a publisher to publish or had their book on Amazon. This wasn’t exactly what I expected… I thought I would meet representatives from HarperCollins, Penguin, Random House or Simon & Schuster, and at least meet agents that had connections with those companies. That wasn’t the case. But there were a couple of good presentations. One of the presenters talked about the reason you don’t give up and encouraged everyone to send out thousands of queries. There was a critique group with Cheri Roman. With ten other writers in my group, I received positive critiques on chapter 1 of my book.  Oh, and the folks who did the workshop on query letters were helpful. I learned mine needed work but now that it’s tweaked, I might use it.

So am I ready now? Can I send my book out? Nope, I have more edits to do. I thought my story was done! I learned I have to search Query Tracker to send out thousands of queries! And most of the agents said memoir is an oversaturated market and they weren’t interested in hearing from me. Whoa,  when I heard that, I was totally crestfallen!  Nope, I didn’t expect that. I had to keep reminding myself I finished the book. I told myself that’s a big deal. I never planned to self-publish on Amazon. I wanted to go to this conference and find an agent or have someone interested in my pitch, but I came home a bit deflated. Yet, that inner urge to keep pushing ahead, to capture the right words to describe the world around me is still there, telling me not to quit. I want to tell the world about my journey with Jessica and my family.  But who would want to read about my story? Would anyone besides my friends?

I started reading Educated, by Tara Westover. Her memoir is on the best-seller list. If the memoir market is saturated, how did she get her story published? Isn’t my story just as unique? After I received my latest rejection letter, I complained to people in my writing group. One of them, the one who everyone says is “the best writer in our group,” told me she has over 2000 rejections and 67 acceptances. It made me feel better in a strange way. I applaud her success. I want both of us to succeed though.  I want validation that my words, my story has merit.

So I will keep submitting. Starting to grow a thicker skin already. If you are reading this, please hit “follow”!

#fwa #writer #disabilities #mother #twins #cheriroman #memoir #literaryagent

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I’ll Be Leaving You Behind

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“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.

 

#dying #writing #death #peaceful departure #caregivers #memoir

 

 

writing

It’s the same but different.

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Me and Jessica

Even though Jessica lives in the group home, she comes home on the weekends, usually for two nights, sometimes one. Last Saturday, after I picked her up at the group home, she got in the car and as usual, asked, “Can we go shopping?”

But something about the way she looked gave me a bad feeling. She looked tired and worn out. However, we had planned something for my birthday and she refused to take no for an answer.

“I fine,” she kept saying.  It was too much trouble to argue with her. Even when she wakes up at 2 in the morning and won’t go back to sleep, it’s impossible to reason with her. What does time mean to her anyway?  So the day went on – we went shopping, bought the needed ingredients,  mixed up the cake, baked it, frosted it.

At the end of the day, Jessica was dragging, so I helped her get into bed. That night was rough. She didn’t sleep well. Usually asleep by eight o’clock, she kept getting up, coughing and complaining about her ears. In the morning, she said she was fine. Again, no use in arguing with her. So we did more shopping. Jessica was excited about the birthday dinner, Mina just wanted to stick her fingers in the cake and taste the icing.

By 5 pm, I was ready for Jessica to go back to the group home. My thoughts were ‘let them deal with her’, but it was too early to take her back. We still needed to do dinner and candles. At dinner, she didn’t want to eat anything. She wouldn’t say what was wrong. When we finally lit the candles and sang happy birthday, she decided she DID want cake. A few minutes later, she started to gag.

Here we go again, I thought – she’s about to throw up all over the table. Springing into action, I shoved Jessica into the bathroom before she had a chance to begin vomiting in Sarah’s kitchen. I was proud that at least we got to the sink in time. Okay, the ideal place would have been the toilet, but it was close enough.

The crazy part is how happy I was that she threw up in the sink. After crying, throwing up, wailing, throwing up again, it finally stopped. No one saw her vomit, but I know they heard the wretching. I heard Mina ask, “Why’s Jessica throwing up?”

Jessica’s vomiting lasted a minute or two. Churned up food poured out of her mouth like rivers of brown lava. Again, I thought about how grateful I was- she didn’t have a chance to throw up all over Sarah’s kitchen table. Thank goodness poor Mina didn’t see anything. She didn’t have to witness the same things her mom and her aunt Alia used to witness, years ago, way back when this happened on a regular basis. Most of the time, it started when Jessica choked on food, unchewed green beans or even a piece of lettuce. The choking, followed by gagging, then vomit.

It was always so sudden, but the gagging noise was the signal to everyone – GET UP and  GO!

I can still hear the sound of the chairs clattering to the floor when she’d start heaving. Alia and Sarah ran from the table as though the house had caught on fire.  Paralyzed, Jessica wouldn’t budge and then the vomit would sprew all over the plates and surface of the table.  Poor Jessica – I’d be screaming at her to move, as the frightening feeling of choking and not being able to breathe made her more immobile. I never knew whether to try to force her up and could never get her to vomit into a bag. No, the mess would erupt everywhere, cascading down the front of her shirt, over the table and on the plates. I would hold her hair back as she alternately cried, choked, vomited and tried to swat my hand away. The clean-up was the worst part.

She rarely does it anymore. That is, until last weekend.

Mina is still asking about this episode. She wants to know why Jessica threw up.”She didn’t feel good,” I told her. She keeps asking anyway. So when Jessica threw up last weekend, it reminded me of all my past challenges. That one in particular.

And, of course, I wrote about it in my book.

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Smacked in the face?

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Yep, that’s him, – the guy who knows just about everything! We were in Yosemite on a hike to celebrate our 39th wedding anniversary!

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.

#disabilities #uniqueabilities #writing #memoir #elevatorpitch #agoodquery