Missing Frames: Memoir of a Woman Living with Hidden Disabilities

Copyright © 2015 Scooter.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

Scripture quotations marked NIV are taken from the Holy Bible, New International Version®. NIV®. Copyright © 1973, 1978, 1984 by International Bible Society. Used by permission of Zondervan. All rights reserved. [Biblica]

Scripture quotations marked KJV are from the Holy Bible, King James Version (Authorized Version). First published in 1611. Quoted from the KJV Classic Reference Bible, Copyright © 1983 by The Zondervan Corporation.

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ISBN: 978-1-4917-4830-5 (sc)

ISBN: 978-1-4917-5608-9 (hc)

ISBN: 978-1-4917-4831-2 (e)

Library of Congress Control Number: 2014921950

iUniverse rev. date: 06/15/2015

Contents

Author’s Note

Chapter 1

To Love a Tortured Genius

Blessings in Disguise

Leaving Silicon Valley

Wildfires

Trinity Alps Preserve

Chatter in the Alps

Footloose and Fancy-Free

My Daughter Siree

Chapter 2

Unbearable and Decisive

The Aftermath

Homeless Veteran

Getting to Know Myself

Assessment Tool

Chapter 3

Dealing with the Change

Individualized Treatment Plan

Health Matters

Chapter 4

Into the Wilderness

Where Is the Help?

Separation of the Soul from the Body

He Left Me … Alone

Chapter 5

Broken Down Memory Lane

Contemplation

Images

The Car Accident

Blast from the Past

Chapter 6

When Trouble Comes

Major Upset

Family Divisions

Work with It

Chapter 7

The Surveillance Video

Expert Witness Testimony

From Pickled to Red Herring

Chapter 8

Agony of Discovery

Malingering

Chapter 9

Bolt from the Blue

Bull in a China Shop

Nonsensical

Chapter 10

Pick Up the Pieces

Research

My Well-Being

Chapter 11

OMG WWJD

Meet Dr. Imjen

Troubled Reality

To Accept My Unusual Nature

Rocky Road

Chapter 12

The Body—Sophisticated Keeper

Faith

Trauma

Stigma

Supportive Team

Inspiration From Elders

Grandma Foodie

Chapter 13

Substance of Things Not Seen

Chapter 14

More Than Ten Thousand Words

Growing Up in Galesburg

Cultural Medium

Building Youthful Character

Chapter 15

Pressing toward the Mark

Living with My Children

Therapies

He Rose and Fell

Caregiver Strategy Unfolds

Keep It Moving

Planning the Plan

Testing the Waters

Managing Type 2 Diabetes

Healing Hands

Need for Structure

Chapter 16

Journeys Converging

With adoration to my father, a native of Galesburg, Illinois,

an honorably discharged soldier from the Korean War,

and to the angels in my life.

Author’s Note

AFTER MY SECOND brain injury, I had so much courage and desperately wanted someone to show me how I could glue and heal all my broken parts back into the wholeness I lost that awful day in the Lailomaret store. I looked to my primary care physician, therapist, and my other doctors for relief, yes, but more than that, I wanted answers.

I decided to pay myself to complete a task by hiring a publisher. I am limited cognitively, made complex by two traumatic brain injuries. The first was in 1976 during a car accident when I was eighteen years old. The second injury was thirty-three years later during a slip and fall in 2009, the motivation for this story.

My account is presented from the life experience I am able to summon and from pieces of paper, conversations, and legal documents—all sketches of tales from my past. I have tried to put them into some type of reader-friendly order.

It is important to know that there will be gaps, random thoughts, and some dots not connected because that is how I make sense of things now. Hopefully it will transcend to an understandable anecdote to the reader.

My storyline is hard to tell because it is fragmented and stems from shattered memories, trauma, seclusion, pain, faith, and rescue.

In these writings, I express impressions of moments I am able to evoke. I do not have an exact recall of minutes, just a patchwork of imprints. Frames of my memory are missing, as are frames in this story.

The purpose of sharing my experiences is to illustrate how, after a sudden life change, adversity, hope, and, most importantly, forgiveness infiltrates into your life, and through it all, you become a stronger person. It is the going through that is difficult—working the works. The thrill is getting to the other side of the adversity and counting it all joy!

Regardless of the trial, I want others to read this and know that waiting for change is not an option when your life circumstances are undesirable. We must look at ourselves for the changes that we seek. Many have and so did I.

It was the Lifeclass that helped spur the action already purposed in me, for which I am eternally grateful. Oprah somehow stirred up my spiritual gift.

Ms. Oprah Winfrey, at the beginning of her Lifeclass on Mothers Raising Fatherless Sons, was not speaking while staring at me like my mother did when delivering an undeclared message. There I was in that one moment in the presence of such a great woman, a woman who has had significant television influence, shaping my life force and confirming my purpose in this life.

It was the angels in my life, and with their love, friendship, and contribution to this memoir, the truth of my suffering and embrace is told. But the Lord stood by me and strengthened me, so that through me the message might be fully proclaimed and all the Gentiles might hear it. So I was rescued from the lion’s mouth (2 Timothy 4:17).

This memoir is based on what happened to me and what I believe to be true, though some details were changed for literary license. The names of the characters in this story have been changed to protect the privacy of the innocent.

But I would not and could not give myself up to despair. That way lays defeat and death.

—Nelson Mandela, Long Walk to Freedom:

Autobiography of Nelson Mandela

Chapter 1

To Love a Tortured Genius

IT WAS THE beginning of spring in 2008. I had the video camera in my hand. My seventeen-years-old daughter, Siree, who is bipolar with attention deficit disorder (ADD), had to participate. Siree, our two dogs, Knaw and Tear, and Ninja the cat looked on.

The property on which we lived was a remote, off-the-grid, forty-acre parcel in the Trinity Alps Preserve. We were making a video for ABC’s Extreme Makeover: Home Edition. We hoped to entice the channel to build a permanent home for us on the property. We lived in two makeshift sheds with electricity from a portable generator, and we took solar showers.

Julian, my husband, a service-connected, disabled veteran, was walking toward the forest. The birds were chirping. You could hear woodpeckers pecking on old oak trees and the waters flowing in nearby springs, creeks, and babbling brooks. He stopped at the home site.

We stopped in quiet surprise as we looked at this bare-bones skeleton of a framed house. It was Julian’s project, and he had a lot of pride in it.

There were a few studs, beams, joists, and some full-sized pieces of plywood tacked up, giving a rough idea of the house’s size and where rooms would be located. A single joist spanned the front wall with a front door being held up by a top beam that was parallel to the bottom joist.

Julian walked over the joist where a wall would someday be and where the future kitchen would be located. Very excited, he walked away from the building site while saying, Once ABC builds us this house, we could hold meetings of young men, soldiers really. Soldiers for God! Here … right here … where this kitchen is to be! He looked into the video camera as he was talking.

We left the building site and went over to the huts. Julian said, Ah, these are the sheds … ah … we live in them, and they provide us … He stopped.

I pulled the camera down and said, What’s wrong?

My daughter, Siree, said, Call them huts.

Julian, who was fond of Siree, smiled and said, Huts. I like that. Thank you, Siree.

With admiration and mutual fondness, Siree answered, No problem. You are welcome, Popz.

Siree picked up the cat on the way back to her shed. She said as she was walking, I’m never getting out of this prison.

What? I said. Siree looked back at Julian to see if he would say something on her behalf.

Julian thoughtfully changed the subject and said, I was thinking. We forgot to talk about the generator. It will let them know that we don’t have electricity here. Well, at least not permanently.

Slightly annoyed at Siree and looking at Julian, I responded with, I think we have enough already.

Julian, raising his voice just a little to show some firmness, said, No! I think we need to add it.

Realizing my husband was having fun with me, I said, Really, honey, I think we’re good.

He realized he was getting to me in a good way and wanted to make me smile, so he added a little more tender force to his tone and said to me, Now don’t fight me on this, woman! I think we need that shot. And I want to talk about how bad it gets here in the winter.

Julian was curious about my sudden disappearance and asked, Where the hell are you going?

By this time, I had opened the door and entered the twelve-by-twelve shed. I scanned the shelf where a row of medication was kept. I came upon a bottle. I opened it and poured two tablets into my hand. Then I raced back outside. Julian was on a rant outside.

Julian noticed me and said, What the hell are you doing? We’ve got work to do, woman! Do you know what that means? Work? I’m the only one who wants to work around here? How is ABC going to want to build us a house if they don’t understand the full situation?

ABC will build a place for us because they will think it is for a good cause. We just have to show some sort of hardship and that we have hope for better living circumstances, I answered. While he watched me step over the mountainous terrain, I said to Julian, Here, honey, and I handed him his pills.

Julian gently slapped and pushed at my hand and said, Get those damn things away from me! He moved away from me, but I still pursued him. Siree was now watching me and Julian from her window.

Moving a little closer in a snuggling fashion, I said, Julian. Sweetie, honey, baby, love …

Julian, enjoying my little love game, said, You’re always sticking those damn things in my face.

Knowing that I had his humble attention, I persisted in my antics and said, You need them … remember?

Julian changed a little bit from the loving tone and said, I don’t need them. I’m doing fine! Just fine!

I did what I always did, persisted in a gentle way. Now, sweetie, we have talked about this. The reason you’re doing fine is because we are keeping you on your meds.

Julian said, Every time I get a little upset, you’re sticking those damn pills in my face! It’s like you think they’re magic and can keep me calm.

I knew I had gotten to him and that he was thinking about taking the pills. I said, That’s not true. I missed giving them to you this morning. I noticed because you seem to be getting edgy. You trusted me to tell you the truth.

Julian, trying to get his last lick in because he knew he was going to take his medicine eventually, said, You think I don’t know myself, my own body?

Responding to his weakening resistance, I softly and firmly said, That’s not the question here. I know you know yourself. You know yourself well enough to know you benefit from these pills, and I am here to support you. Besides, I love you too much to ever hurt you.

Julian was resigned and thinking. I continued to encourage him to take his medicine. Come on, honey … remember? We have a deal. Remember?

Reluctantly, Julian snapped his hand and said, Oh give them to me.

Being his wife, I wanted to kiss him and said, Good. That’s the man I love. Julian would not let me get too close to him. He took the pills from me and knocked them back without any water.

After seeing him take the pills, I asked him to sit there for a moment while I dealt with my daughter. I let Julian know that if he still wanted to shoot more stuff later, we would.

About thirty minutes lapsed. I was getting a little anxious because they just started taping the video, and I had minimal skills to produce the video. I needed the takes to be just right. As I brought the camera up to my right eye, looking through the viewfinder, I said, Okay … action!

Julian opened the door to one of the sheds but turned back, still talking to the camera.

After the bear attacks, we needed something more permanent … safer. But we have a bigger dream. I tried … tried to ah … build our home myself … ah … but with all my disabilities, I couldn’t do it right, and I wasted three thousand dollars’ worth of building supplies …

The bear attacked our tents, not us. For some reason, we had moved our campsite to a flat parcel of land near the creek. It was nice because of the many oak trees and flat ground. Listening to the rushing waters was an added benefit.

The dangers were all related to the water. All of the wild animals came to and passed through the creek. Our campsite was smack dab in the middle of the animal trail. We did not know it. Our ten-man tent was full of food, syrup for snow cones, bleach, lanterns, and our bedding. Most of those items had something to do with another moneymaking scheme Julian had going. I am not sure about the bleach, though.

Fires in the forest had animals scrambling and moving about in the wilderness. A black bear common to our area tore down our tent and ate everything in the tent, including the couple bottles of bleach and syrup. Our clothes and bedding were torn to shreds. It had only taken a few moments for disaster to happen.

Fortunately, neither my husband nor I was there as part of the bear’s eating frenzy. However, the reality of hidden dangers in the wilderness was quite real.

I said, Cut. I lowered the camera.

Julian asked, What now?

Considering where the video was going to be sent, I said, I was thinking, do you think you should talk about the money you wasted? ABC might get the idea you’re wasteful. And I think it’s TMI (too much information), love.

Julian said, On the show, don’t they come in and build it for you?

I replied, Well, yeah.

With a bit of confidence and posture, Julian said, Okay then. Besides, I think it makes me look more humble. You know, being able to talk about my weaknesses, my disabilities.

I responded, Good point. You’re right. I’m sorry.

For in the time of trouble, he shall hide me in his pavilion: in the secret of his tabernacle shall he hide me; he shall set me up upon a rock, Julian remarked.

Julian is an extremely intelligent, tall, black man, who has two master’s degrees and is a doctor of ministry. He knows a lot of things. He was formerly a licensed, credentialed K-12 teacher, real estate broker, author, pastor, and forty-year mason. Unfortunately, he suffers from schizophrenia. He manages this debilitating disease with medication. You would not initially notice his disability. He reads quite a bit and talks all of the time. What a handsome, spiritual, conversational man I found him to be.

My husband had his own issues as a service-connected disabled veteran with 100 percent disability. Actually, 30 percent of him was employable according to the VA system. I wonder which 30 percent. I know this because I advocated for my husband when we married in 2007. He was at 10 percent disability then.

I used my advocacy skills to work with the DAV, formerly known as Disabled American Veterans, a longstanding advocacy group to men and woman who serve. They represent the interests of disabled veterans, their families, their widowed spouses, and their orphans before Congress, the White House, and the Judicial Branch, as well as state and local governments, which have regulatory responsibility for our veterans.

It took effort from many angles to get my husband’s case to be reviewed. The Office of Conflict Resolution in Washington, DC, proved to be a valuable resource for veterans and their families. I wrote letters to Congress on my husband’s behalf. I maintained great records and pursued avenues to get the government to make a decision in my husband’s favor.

The DAV proved to be a fantastic and genuine partner that was concerned about the quality of life of the veteran and his family.

Blessings in Disguise

MY CAREER DEVELOPED out of a blessing in disguise. I remember in the early mid- to late nineties, my son, Jerome, had some serious undiagnosed mental health issues as a child. He was fearful. It was apparent to me that he did not see the world as others did. Being an extraordinarily bright child, he was always being treated older than he actually was. His overshadowing presence in terms of his deepening voice and height was also a contributing factor to false perceptions about him.

He was constantly falling, tripping, or being clumsy because he grew so quickly. He was well read in an environment of adult-like expectations from others. Socially, he was not underdeveloped according to his age.

There was a time in his young age that he visited with his father in Ohio. My son came back to California with many issues. Shortly after his return, I was wrongly arrested for child abuse and exonerated after a court trial. There was one juror, an actor, who thought I should be guilty of child abuse. That juror wanted me to go to jail for spanking my son for running away at age eight, carrying a knife to school, and basically crying out for help.

This is an important story because it has shaped my approach to problem solving.

I was made to justify my every action. I was even ordered to go to parenting class while my case was being put on the court’s calendar.

Yes, parenting class. I had no car and a full-time job. And yes, I was concerned about the safety and well-being of my children should anything happen to me. That’s why I raised them to be independent thinkers and doers. It was important that they knew how to take care of themselves in terms of finding resources and positive relationships to maintain a certain quality of life.

I had to do those things for my children and me. I was not a mother looking for a handout. I have a strong work ethic and live by Godly principles. The story is important and went like this …

I was twelve minutes late. To say that I seemed overwhelmed would have been accurate and less faultfinding of my state of being. I had stated many times before, I lack support from my family and friends. My employment was in jeopardy, and I felt isolated because no one wanted anything to do with my family’s problems. I felt powerless because everyone else seemed to know what I needed; they told me what do, and I had to do it or lose my family. I was angry because nobody appeared to listen to what I needed. This was how I felt when everyone else was an expert on my family, but no one asked me. What I found out later is that I could, and we all can, create our own families, even when—and often especially when—our own extended family is too troubled or put off by our nuclear family’s issues.

I was the one who had some serious life-changing issues to deal with. What they did not know was that my days began at 5:00 a.m. I would wake up my two-year-old son, and we would wash up, put our clothes on, and eat breakfast. I then woke my daughter, who was three months old, washed her, changed her diaper, and nursed her. She continued to refuse any type of bottle or nipple. People who knew me joked about my being walking groceries for my daughter. It wasn’t funny to me. There did not seem to be any time for me, save when I got to sleep.

My early morning continued with a brisk walk at 5:45 a.m., with my children in tow, to the bus stop, which was five blocks away from where we lived. I had to catch three buses to get to work and four buses to get to the mandated parenting class I had to go to twice a week in the evening. My oldest son, Jerome, who was being followed by Juvenile Probation Services and Child Protective Services, was discharged from a psychiatric hospital after a forty-one-day stay because my benefits ran out, yet he was deteriorating. Because of the schedule I was trying to keep and because I could not guarantee his safety or the community’s, he went into the children’s shelter, and from there to a foster home.

I do not remember my response to the