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 hour “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 dont 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
Caution, this post is meant to be therapeutic for me. Yesterday and today were one of those days lots of us have, where you feel like whatever you do isn’t right. And since I am blogging about writing, I feel like nothing I’ve written is any good and I should just ‘give it up’.
Again, I caution those of you who don’t like to read whiny posts, because I am about to launch into some major whining. I’m going to let loose, really let loose. So you might want to stop reading right here. Fair warning. Stop now!
Personally, I hate people who whine. I really do. Yet I have to dump this feeling off on some corner and leave it. This here’s my corner. Seems like a safe place to do it. I have to whine. I have to tell what it’s like when your editor can’t understand why you haven’t figured out how to stop using a passive voice, haven’t remembered what he said about the forbidden crutch words he told me a million times not to use (and I use anyway)… On top of that, last week, my local writing group trashed my writing and I seem to be going in circles as I attempt to make myself understood. Even Chip acts like the things I say don’t make much sense. I feel HOPELESS!
So I titled this post “Give it Up” like the 1980’s song of the same title. Lately, I’ve taken to listening to it when I need jazzing up. I heard it when I went to spin class while the instructor played her mix of music. I was ready to quit pedaling, ready to quit while mumbling, ‘this is stupid to work so hard at exercising,’ when the song came on. It was a hit in 1982, KC and the Sunshine Band made a video (check it out on youtube) – you’ll see the 80’s shoulder pads, the mini skirts, the pouffy hair, KC’s exposed chest and his mullet and unbuttoned shirt…. but when that song came on, I felt like dancing to the beat and what do you know, I was pedaling away on that bike and kept going! Now I play the song whenever I need to get excited about something. But today my take on Give it Up is the complete opposite of the repeated lyrics “everybody wants you.” Instead, I lament that nobody wants me, nobody wants to read what I have to say and I should give it up because I don’t have what everybody wants!
Except! It’s a little protest from another part of my mind, saying wait a minute here, .. a little tiny voice inside that whispers “That magazine is publishing your story in April so someone thought your writing was okay. ” I guess I shouldn’t give up entirely. At least not yet. Maybe I’ll even read again to the writing group. I can’t believe I fall so far when I get upset about honest criticism. If I’m going to write, I better be able to take it.
This gets me started on another topic. I see myself like the mouse in “If you give a mouse a cookie….” a wonderful children’s book about how one thing leads to another. Maybe the next post will be about how this negative, hopeless feeling, this downward spiral was triggered by my 96-year-old mother! How in the world, given her struggle with dementia or Alzheimer’s – how is she still able to berate me? Another story entirely and it does have it’s funny elements.
#writing #fearoffailure #authors
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 the 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 which 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 corona virus, 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 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.
#memoir #Iamwriting #disability #mothers #plot whisperer #PitMad
|The more I talk to mothers who have disabled children, the more I understand the immense challenges we’ve all had to deal with. It reminds me of what we all have in common, the loneliness we’ve experienced, and the common thread that links us as mothers of special ones. I wrote this post after I finished an email to a writing friend. She’s a mother of a teenaged son who lives in a residential facility. He lives there because his uncontrollable, violent outbursts were a threat to her and her family. I imagine she’s wracked with guilt, yet she did the right thing. My email commended her for her devotion to her family. I commented on the endless and selfless ways she’s helped her son throughout the years. I commended her bravery and courage. After I sent the email, I realized I could say the same things about myself. My thoughts skipped like a ping pong ball. I thought about the years Jessica has lived in the group home. I thought about the day I moved her there. I am grateful that Jessica, unlike my friend’s son, has never been violent. I’ve witnessed, firsthand, how that looks. Years ago, one of Jessica’ friends bent Jessica’s finger so hard, the teacher thought it might be broken. I took Jessica for x-rays. I remember when the girl’s mother told me her daughter threw a brick (where did she find a brick?) through the T.V! Let me be grateful for small miracles.|
Of course there’s also horror stories about group homes. Thankfully, Jessica hasn’t experienced any abuse, but it’s a parent’s worst nightmare. The mother who recommended Jessica’s group home previously had her son in a Chicago home until she discovered the truth and had to rescue him. The story went like this: something about horrible conditions, lack of medical care, etc. The boy was nonverbal, so he couldn’t call for help. I don’t think he even knows how to use a phone. I’ve always imagined how this made my friend feel. What about her guilt? I’ve considered asking her – “Do you feel guilty about what happened?” but she’s so pragmatic, I imagine this never crossed her mind. I admire this woman. She’s a bright, strong, sensible mother. I wonder if the same thing happened to me, what would I do? I’m pretty sure I’d still be blaming myself. When you have a special needs child, you never stop worrying. The angst, the pain, the fear, the worry, those emotions never completely disappear. I still worry about Jessica, although not as much as I used to. She appears to be thriving in her group home. True, there are times when she gets intimidated and refuses to explain what’s wrong. I used to call it her autistic moments, because she closes down like a shuttered storefront. These minor issues pale when I think of my friend’s son, the boy in the residential treatment center. Whenever Jessica has an issue with the staff, it’s usually because she’s stubborn. They might tell her to get dressed and she’s unwilling to cooperate. One time they called and told me they wanted her to brush her teeth and she refused. I’m grateful these were minor problems. Many times, I’ve felt sorry for myself. It’s pointless, I know, but I can’t help feeling it. What’s arisen out of these experiences is an incredible story. While I still don’t fully accept Jessica’s limitations, I know I have to. It’s obvious I have. I have a responsibility to help Jessica and I refuse to let go. Part of me demands I deal with it. The other part yells – “No I don’t want to!”
I remind myself something good came from my experiences as a mother of a special needs child. I wrote a book. I know I’m the queen of denial (everyone in my writing class says so) – but I try and use this to my advantage. One thing everyone says about my writing is how brutally honest I am. I question if I can show my readers the depths of what I felt. What I still feel to this day. Will people want to read my story? Is it unusual enough? Is it compelling? There’s a reason I was driven to write it; it hurt, I hurt.
I am a mother.
In late October, or early November, after I came back from the Florida Writers Conference, I decided to use Submittable to send out a couple of my chapters as short stories. A couple of the entries were free, a few of them cost under $5. Altogether, I sent out twelve entries. People in my writing class said I probably would have every one of them rejected, so I shouldn’t get all excited. They said it was too early to do this, not ready, the work needed heavy-duty editing and blah-blah-blah.
Well, when I get excited about an idea, I usually jump on it before my enthusiasm deflates. Naively, I went ahead and jumped on the “I’m going to get published” bandwagon, even though I knew nothing about what I was doing! I received nine rejection notices before I realized my fellow writers were probably right. I decided to listen to their words of wisdom, and allowed them to caution me. I needed to focus on learning to sharpen my skills. So I quit wasting time and stopped sending submissions that wouldn’t have a chance of being accepted. The next three submissions are “in progress” which means pretty soon I will be hearing from them with a great big “No thank you.” That’s why today was such a shock. I opened my email and saw the words, “Congratulations!” in the first line. A magazine in Chicago emailed me to say they want to publish my story.
I don’t want to minimize the fact that they look like a small literary magazine, but they are in fact, very small. The fact is, they will be publishing what was a very rough draft of my first chapter as a non-fiction short story. The story is basically the first chapter of my book when Jessica moves into the group home and the flashback of the day we went to the Mailman Center and heard that archaic phrase “profoundly retarded.” So many emotions went into creating this chapter, and maybe, just maybe these editors saw something in my language that surpassed my tendency to use passive voice!
Then I read another article about the R word (see below) and I am thrilled this has become such a hot topic. I see why I might actually have a chance with my memoir.
I am struggling. Oops, I used the “ING” word! And I’ve only written three words. Dave, the wonderful editor who has patiently tried to teach me how to write, is surprised by how many times I use words that end in “ING”. I thought the editor was (oops I used another word I’m supposed to avoid overusing -“DON’T USE WAS!”) Well, I used to think an editor was supposed to correct the mistakes a writer makes. This is not what I’ve experienced. Dave actually wants me to develop into a better writer. Up my game, so to speak. Get stronger, so that when we (finally) approach the challenge of editing my memoir, I will be prepared.
Dave first approached me when I posted on Facebook about the multiple rejections I’d received from submissions. He asked for samples of my writing. He commented he understood why I received the rejections. ‘Wordy sentences. Extreme passive voice.’
Those of you who are not writers may wonder what’s a passive voice?
Passive voice produces a sentence in which the subject receives an action. In contrast, active voice produces a sentence in which the subject performs an action. Passive voice often produces unclear, wordy sentences, whereas active voice produces generally clearer, more concise sentences.
Concise. So I am trying over and over again. Poor Dave. He probably feels like I felt when I taught Kindergarten and I’d have a kid who couldn’t differentiate between the letters S and the letter D or a kid who couldn’t sound out a word or remember any of the high-frequency sight words like ‘and’ or ‘see’. Easy stuff right? I get it. The poor kid sitting across from me probably wondered why I had that look on my face.
My struggle to show Dave (oh SHOW is another one of my problems!) I’ve applied his lessons, used his instructions and have mastered the ability to write without TELLING – well my struggle is ongoing. Since I am struggling, I thought it would be interesting to do an ongoing journal/blog about it. Why not? At least it’s practice.
I don’t know whether or not I am making progress. I’d like to think so. What I am learning (ok I see how many times I’ve written the ING words but I need to finish this post, so for now, please bear with me and ignore all of it) – what I have learned is writing is a challenge. I worry Dave might give up on me, after all, if I am his student, shouldn’t I have caught on more quickly? Yet, I don’t think he will abandon me. He seems committed to helping me reach that ultimate goal of editing the entire memoir. Dave is truly a mensch, (a Yiddish word for a person of integrity and honor.) He gave me an assignment, to write a short story, which at first, I stubbornly resisted….now after months, I understand the goal is to allow me to experience and “get” what I am doing right and wrong. The support I’ve received is invaluable. One day, I hope to make him proud of the writer he helped shape.