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Janice (Not So Cushie), Upcoming Book, Installment 2

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Read Installment 1 here


WHEN ANGELS KNOCK

by

Janice Barrett

     I can’t fight back, have no breath to plead. She pulls out a butcher knife. The one we use at Christmas and Thanksgiving to carve every turkey. The wide 16 inch blade looks more like a guillotine above my head and I know mom’s hand is positioned for that kind of thrust.

     I look away, waiting for the blow I know will come and see my 11- year-old neighbour’s face pressed against our glass front door, Girl Guide cookies in her hand, eyes wide.

     “Run. Get out!” I yell.

     She’s frozen like me.

     “Get out now,” I bellow louder.

     Startled, my mother puts the knife down just as the cookies hit the cement front stoop and my neighbour disappears from view.

     Mom sits at the kitchen table with pen and paper. “What’s happening to me? What am I doing? There’s something wrong with me,” she says. Mom mumbles symptoms to herself, scribbling them on the page. As the list grows longer, mom becomes more agitated until she crumples the paper up and throws it. “There’s nothing wrong with me,” she screams.

     I run out of the house, down four blocks to the doctor’s office, burst through the door and say, “I need to see the doctor.”

     “Do you have an appointment?” the receptionist asks.

     “No.”

     “Take a seat.”

     I can’t sit. I pace back and forth in the crowded waiting area. I stay quiet while another name is called, and a man follows the nurse down a hallway.

     My body shakes and my head vibrates until the man comes out, and then I scream at the nurse, “I have to see the doctor.”       

     “What’s wrong?”

     “My mother tried to kill me.”

     The nurse leads me into the doctor’s office. I relate my story to the doctor who advises me that mom is paranoid schizophrenic and warns me that in her present condition she may be suicidal. He reassures me that at the end of the day he will stop by my house to examine my mother.

     Fearing for Mom’s safety, I run back home to check on her. She is sitting beside the record player, smiling her big-toothed grin with Elvis stuttering, the lyrics caught in the scratches on the vinyl. Mom not noticing. Mom stuck in her own groove trying to block out her voices.

     Afraid that Mom will overhear me on the phone, I leave to find a phone booth and call Dad’s office in Kitchener, a 40 minute drive from our home in Stratford. It is two hours before the office will close. I am told he is out for the day. He left no contact number where he can be reached. There’s no one to call. I don’t know why we had to move here away from family and friends. 

     And I’m not calling my sister Jackie at university. She’ll want to come home. One of us needs to escape this life. Dad’s no help. It’s up to me.

     I’m relieved when the doctor finally arrives to examine my mother.

     “Can’t you turn that off,” the doctor motions to the record player while Elvis stutters.

     “It helps keep her calm.” My words breathy, pushing past the overwhelming emotion of letting go of the responsibility to have someone else in charge. Relief at last.

     He moves his stethoscope over mom’s back. “At least change the record.”

     I welcome the excuse to walk away. I pull the record stand over by the couch and sit down. It would have been easier to sit in mom’s chair to sort through the records, but I won’t sit in her chair doing what she does, afraid that it will turn me into her.

     They are talking in quiet tones. Mom almost whispering her answers. I can breath again. I don’t care what they’re saying. He’s taking over, so I don’t have to be in charge any more.      

     When the doctor finishes, he sends mom over to her chair by the record player. I put on The Beatles “Hey Jude” another one of her favourites. The lyrics, ”to make it better,” vibrating through my body while I walk to the dining room table. The doctor is talking to me, but it’s the Beatles I hear singing better, better, better. The sound escalating better, better, better and I’m afraid to hope.

     “Where’s your father?

     “I don’t know.”

     “When does he usually get home?”

     “Not until late. Not until mom goes to bed.”

     We discuss the need for her to be hospitalized.

     “She is paranoid schizophrenic,” he says and advises me which mental asylum she will be put into and the procedures he will implement. I take notes to relay the information to my Dad when he shows up.

     “How old are you?” he asks.

     “Sixteen.”

     “Do you have any relatives or adults that can stay with you here until your father gets home?”

     “No. There’s no one. We just moved here.”

     The doctor speaks to me like an adult and all of the decisions are made by the two of us. He writes his phone number on a prescription pad, rips it off and hands it to me.

     “Have your father call me when he gets in,” he says. “If anything else happens before he gets home, get out of the house and call me.”

     “Thanks,” I say, watching him walk out the front door.        

     Dad gets home at 11pm.

     “Where were you?” I ask. “I called all over.”

     “I had to go vote. It’s election day.”

     “You left me by myself when you knew this was the worst mom has ever been. You didn’t even leave a number where I could reach you.” I glared at him in silence until he looked down at his scuffed oxford shoes.

    “I had an obligation to vote,” he says.

     “What about me?” I yelled. “You have an obligation to make sure I’m safe.”

     “It’s my civic duty to vote.”

     His words knock the fight out of me. How can I argue my life is more important than voting? Why would I need to? Why can’t he see? I can’t hear the lame excuses that are more important than me. It will hurt too much.

 

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Janice (Not So Cushie), Upcoming Book, Installment 1

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Janice writes: I have written a memoir about my experiences with Cushing’s Disease. An agent is interested in it but says I have to have a platform before she will represent me. So I need a following. I want this book to get out to show people the effects of Cushing’s in our lives and to help the families going through this to better help and understand the person suffering with this disease. In the book I mention this site. Unfortunately I found it after I already had the pit surgery.  I have also written a play based on my memoir. I am on a mission to inform people of this disease.


 

I will be adding to this post on Wednesday, Friday and Monday for people who wish to follow me.

The following is an excerpt from my memoir which is about Mary O’s site and the people on it.

“Looking up medical references, I find a Cushing’s help and support internet site, founded by Mary O with over 6,000 members world wide. Story after story all screaming the same thing: believe me, listen to me, I’m sick. Doctors telling them to diet and exercise or that this is such a rare disease they can’t possibly have it. Excuses to dismiss us. It isn’t that the doctors don’t have the knowledge, they won’t believe us. So many, too many, my story isn’t unique. I am the rule and not the exception. I have to make people believe us and so I write.

WHEN ANGELS KNOCK

By

Janice Barrett

I wake up aware that I’m on display. There are no tracks in the ceiling for curtains to be drawn around my bed like most hospitals. I want to stick my thumbs into my ears and wiggle my fingers saying, “booga booga,” but know this is not the place or time. These people will not have a sense of humour. The white ceiling melts into bare white walls oozing an antiseptic smell. I know why I’m here. I went crazy. I felt the snap.

A crackly voice over a speaker announces, “Code White.”

I’m thirsty, but beside my bed the water bottle is empty.

“Code White.”

Built into the room is an office with a glass partition  where a nurse is standing. The mattress crinkles like plastic under the sheet when I roll out of the single bed, in a row of single beds. Walking up to the window, without saying anything, I slide my empty bottle through a circular hole in the middle of the glass and she, without saying anything, passes a full bottle back to me. I saw this once in a movie and I know I’m in lockdown. She is Nurse Ratched and I’m in my own sequel to “One Flew Over The Cuckoo’s Nest.”

I don’t want to be crazy like my mother. Death was her escape. I don’t want my children to live with the on-edge fear I did. Afraid that something they will do or say will trigger a psychotic episode and make them feel responsible.

“Code White.”

Music replaces the crackly voice, and I think of mom’s favourite song and her sitting beside the record player for hours on end with me hoping I’m safe. I lived in that world of “if only” for too long.

If only I hadn’t wanted toast.

***

I was safe at high school when my name was called after the morning announcements to come down to the Principal’s office. Dad was there. He said mom isn’t “feeling well.” I hate those words, his code words for scary psychotic. And I have to go home to look after her.

Mom looks okay, hair and make-up done to perfection, listening to Elvis Presley’s “Blue Christmas.” But I never know when they will come, the voices in her head.

As long as the record plays, I’m safe. It’s her distraction from the voices. Five hours and still when the needle lifts off the vinyl, mom’s hand reaches across to replace it again.

I keep mom in sight in the livingroom when I go to the kitchen to make toast. The wooden door on the breadbox hangs lopsided, the hinges pulled out from the wood, the handle broken, a thin post lying on the countertop. Mom is watching me. I pretend I don’t notice the breadbox hoping then she won’t react.

The needle scratches across Elvis’s lyrics, and I’m sorry that I wanted toast.

She bolts out of her chair and I freeze when I see her hazel eyes bright with her demons.

“He’s coming back to kill me. The breadbox slammed down three times to warn me that your dad is going to kill me with a gun or knife,” Mom says. “Please don’t leave me. Your dad manipulates people, he controls them,” she screams.

The cords in her neck protrude and her lips stretch to a thin line to spit out her phobia. “We’re his puppets. He’s pulling the strings making us do things.

Hate etches her skin, pinching her nose, turning her hazel eyes into green, glowering slits. Numbed by fear, I can’t move, can’t speak, my body vibrating.

Mom’s hands are on my shoulder shaking me to make me understand her terror. Her fingers kneeding into my skin, nails digging viciously when she throws me up against the kitchen cupboard. My head pounds the wood and I hear a small crack before she slams my numb body against a cabinet shrieking, “You control people too. Who do you control? I want their names.”

I try to get away, but she thrusts me back, a pull handle on a drawer jabbing into my hip.

“Give me the names,” she yells, and hurls me backward onto the countertop. I gasp, gulping for air when she hammers her arm down across my chest. Her arm, a metal bar, that holds me down, while her boney elbow scores into my ribs. Her eyes are as terrified as mine. Her weight crushes me as she opens the knife drawer by my left hip. The sound of metal blades clang while Elvis croons, “without you.” And I am frozen.

 

Stay tuned for the next installment.

 

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Marie C (MarieConleyHbg), Pituitary/ BLA Bio

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Marie Conley is a consultant focusing on engagement and stakeholder strategies and fund development for a variety of clients through her company Conley Consulting, LLC.

During her tenure in politics (1994-2009), Marie was a trusted advisor to top-level government officials and private sector organizations beginning in 1994 as the scheduler to Governor Tom Ridge. In 2009, as a senior level fundraiser, strategist and event planner, she made a successful transition from Pennsylvania’s highly competitive political landscape into the equally challenging field of non-profit development as director of Penn State Hershey’s Children’s Miracle Network. In 2012, her focus was working with Sue Paterno, wife the late Coach Joe Paterno, to assist with a number of initiatives around the issue of prevention and awareness of child sexual victimization focused in the arena of higher education. Marie continues with the national experts Stop It Now! on its Circle of Safety for Higher Education. ™

Marie never takes any professional or personal task at face value. She is always looking for ways to improve efficiencies, outcomes and most importantly calls upon herself and those around her to do the right thing for the right reasons. Her accomplishments in such a short period of time at Children’s Miracle Network are only one example.

Marie was unanimously granted Governor Emerita status by the Pennsylvania State System of Higher Education for her more than 13 years of service. Until she submitted her resignation in May 2016, Marie served as the Vice Chairman for the Board of Governor member of the Pennsylvania State System of Higher Education and was Chair of the Academic and Student Affairs Committee. She spearheaded significant changes in policy regarding the recruitment and hiring practices for university presidential and chancellor searches and has re-evaluated and changed the policy for university presidential evaluations. Marie was first nominated in 2002 and was re-appointed by Governor Ed Rendell in 2004 and re-appointed by Governor Tom Corbett in 2012. From 1997 to 2011, Marie served as a Council of Trustee for her alma mater, Bloomsburg University of Pennsylvania. She played a critical role on the Board of Lincoln’s Footsteps commemorating the 150th anniversary of the Lincoln’s Gettysburg Address. She continues to be a guest speaker and panelist on development and stakeholder engagement for a political and non-profit organizations.

But today Marie is facing her toughest battle yet. In 2012, Marie was diagnosed with Cushing’s Disease – a disease so rare it affects less than ten people per million each year. She has fought through dozens of hospital stays and numerous surgeries – including brain surgery – and still struggles daily to run her successful consulting business and a household that includes a husband and young son.

There’s a reason former Pennsylvania Governor Tom Ridge calls Marie “one of the most indefatigable people I’ve ever known.” Because while Marie drew the short straw in being one of those ten-in-a-million with Cushing’s, she has chosen not to simply live with the disease, but to use her skills honed in political campaigns to raise awareness and to fund critical research that will help those around the world who are living with this insidious disease. Already, The Conley Cushing’s Disease Fund has raised tens of thousands of dollars to fund research, to educate doctors on the signs of Cushing’s and to support her new book, A Cushing’s Collection.

Marie is not defined by Cushing’s. She is inspired by it to help others – and to leave a legacy of hope.
Marie hails from Bucks County, Pennsylvania; she lives in Elizabethtown, Pennsylvania with her husband, Chris Lammando, and their son, Carter.


The author of A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy is a member of the Cushing’s Help message boards.

From Amazon:

Diagnosed with a rare disease that only affects between two and ten people per million, Marie Conley used emails to communicate with family, friends, and co-workers to keep them apprised of the diagnosis and prognosis of Cushing’s disease and the many complications she experienced on this journey. Her ironic humor and raw, emotional approach helps bring hope to those touched by this rare and unrelenting disease.

In her mid-thirties, Conley, who strived to keep herself healthy while maintaining the delicate balance of raising a young child, keeping a home, and a demanding career, began to experience a variety of unexplained maladies inconsistent with her life style.Because of the elusive nature of Cushing’s disease, the treatment is a long and complicated process of trial and error. At this time, there is no cure, largely due to the fact that Cushing’s disease is considered an “orphan disease.” As is her nature, she has decided to “adopt” this “orphan” and is doing everything she can to bring awareness to this disease.Conley’s tenacious spirit and determination would not allow this insidious disease to triumph over her life. Armed with her laptop as the only weapon available in the sterility of the recovery room, the author attacks the keyboard with a vengeance to let friends and family know that in this battle, there is no surrender.

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