Recovering the Satellites

“We all have the courage to talk about it. We’re as sick as our secrets, and shame keeps us in isolation.”

~ Ashley Judd
Academy Award-nominated actor
Survivor

 

My name is Sarah, and I’m a survivor of sexual abuse in childhood, and a rape in college. Both experiences were horrible. But the one that had the most detrimental affect was being molested by a family friend when I was about four years old.

I have a hard time remembering my exact age, or how long the sexual abuse lasted. But it happened multiple times. The abuse is probably what keeps me from remembering sunnier childhood memories that my sister recalls with ease. It made me physically sick, and somewhat of a loner. The experience, and my family’s reaction to it, shaped the course of my life from that point forward.

My parents did not know I was being abused. I didn’t tell them because I didn’t have the vocabulary to describe what was happening. I didn’t know that I needed to tell them – there was no education around sexual abuse at school, or in Sunday School at church.

The abuse stopped when I stopped it, when I refused to be left alone with him. In my childhood home, there was a window where you could see anyone coming to our front door. I would look toward the window whenever I heard someone coming up the steps. If it was him, I would run to the basement and sit with my toys. When my mom or dad called for me, I would tell them that I was playing, and didn’t want to go outside.

The teenager who abused me was about 12 years my senior. Everyone liked him. He was an A student, community volunteer, Boy Scout, churchgoer. Squeaky clean. Even though I was a child, a part of me knew that telling others might not go well for me. I felt trapped, alone, and very afraid.

When I was older, I made friends, but preferred being alone. I loved anything that provided an escape: Books, music, magazines, TV. Lots of TV, where the bad guys always faced justice and, had I lived in a TV show, I could have called the A-Team to deal with things.

My childhood best friends, oddly enough, were boys – brothers who lived up the street. I liked them because they never asked anything of me. And they were into my favorite escape from reality: Dungeons and Dragons. I was always a cleric: Strong like a warrior, but with the spells of a wizard and the hoodoo skills of a voodoo priest. Even when faced with the most powerful dragon, I could always save myself.

My D&D friends and I drifted apart when they started dating. My parents said I couldn’t date until I was 16, and that was fine with me. After my sixteenth birthday, I went out on two dates with the same guy, then gave up on dating. I insisted that the good ones were taken, and besides, I was too busy for all that nonsense. I filled my time with choir, band, stage crew, soccer, tennis, ski club, National Honor Society, church youth group, and concerts with friends. My younger sister went to four proms.

I spent my time either with my best friend Julia, or listening to 97X and making mix tapes.

When I was about 17, I told a good friend about the abuse. She listened intently, and after a long silence, told me that she had been sexually abused by her uncle. We swore each other to secrecy, and stayed up the rest of the night talking.

Telling My Sister
During our college years, my sister and I were very close. She was the first person in my family that I told about the abuse.  By that point, I knew that telling my parents would be quite a blow to them.

I told her during my sophomore year. She had come to campus for Sib’s Weekend. We spent two fun days meeting my friends, going out to eat, going to parties. Ohio University has an unbelievably awesome marching band. We went to a football game and left after the band’s halftime show, along with more than half of the fans.

The second night, I talked with my sister about the abuse as we were lying in my dorm room’s bunk beds. I think she heard me, but to this day am not sure. She said nothing. Either she was shocked, or asleep. I was too scared to talk with her about it again.

The Culture of Silence
I had been going to Take Back the Night rallies, and hearing the stories of many others who had been sexually abused or assaulted. I was coming to the point where I knew I had to tell my parents. What if the teenager who did this to me had grown into a man who continued to abuse children? What if he had done this to other kids?

One night, my Mom called with news that stopped me in my tracks: He had committed suicide. I immediately felt sorry for him. Then relieved. And then guilty for being relieved that he was gone. Had he been abused? Who had taught him that’s it’s OK to abuse a child?

While home on a break from school, I told my parents what he had done to me. My Mom sat silent for a long time, looking down. I don’t remember what my Dad did right after I told them. But in a few minutes, he started asking questions.

After that conversation, it was like the abuse had never happened. No one in my family asked me about it again. The next time we talked about it was when I brought it up, after being diagnosed with depression a few years later.

Talk Therapy
My psychologist was quite good. We talked about my childhood, and the sexual abuse. After about six months of weekly sessions, I felt better. Over the next 10 years, I was happy for long periods of time. But every two or three years, depression returned and I’d go back to talk therapy.

When I was 36, I broke down during an incredibly stressful time. I was in a verbally and psychologically abusive relationship, working 50+ hours a week in a director-level public relations role, and my mom had just been diagnosed with terminal cancer. I started having anxiety attacks – only I didn’t know what panic attacks were, or why they were happening. No one had ever told me that anxiety could be this bad.

My anxiety grew to the point where I started losing sleep. After five days of virtually no sleep, where I continued to work, I had a nervous breakdown. During a hospital stay, I was diagnosed with bipolar disorder. My family was supportive, but very confused and upset. Mom was weeks away from hospice, and I’d been hospitalized and given a diagnosis that neither me nor my family knew anything about. It was too much.

A few months later, mom passed away. Dad grieved for a year, then remarried three months after he started dating. His new wife’s extended family was large – about 40 people. When I came to a family gathering, I realized that everyone knew about my diagnosis, even though I had not told them. Some gave me the side eye or stayed several yards away. Later, I asked my Dad about this, and he admitted to telling them about the diagnosis – without my consent.

I was “outed” by friends or family several times. Each time, it was devastating. These outings were a real weeder, a true litmus test.

If I needed help with networking, anyone who knew about the diagnosis was less likely to provide a connection or a job lead. Thankfully, there were exceptions. Close friends and people with whom I’d worked before who said, “I don’t think you have this illness. Regardless, I’m hiring you because you’re a good writer, and I like working with you.”

Seeking more understanding, my Dad and stepmom took a Family-to-Family group class through our local chapter of the National Alliance on Mental Illness. But since those who take the course are often helping someone in crisis or in a worst-case scenario, the stories my family heard at NAMI made them fearful.

Marriage
In 2010, I married a wonderful man (after a year of dating). He had a cousin diagnosed with bipolar disorder, and another cousin diagnosed with schizophrenia. He liked that I was open with him about everything from the get-go (diagnosis talk on date number three, for those keeping score at home).

I was working at Cincinnati Children’s Hospital as a writer and video producer. My boss and coworkers, who were the best, threw me a bridal shower. After years of feeling like an outsider, I finally felt like everyone else. I was getting married, making plans for a family, doing the things I’d wanted to do for a long time.

My fiancee and I split our time between his house and my apartment – which were only a half-mile apart. His son welcomed me into the family with a warm smile and brilliantly dark sense of humor.

Surviving the U.S. Mental Health Care System
Three years later, everything changed. My husband and I, with the blessing and support of my clinicians, decided that I could titrate off (aka quit) my medication so I could try to become pregnant.

Before this becomes yet another cautionary tale about going off medication, let me make one thing clear.

When I stopped taking medication, I had never received the most accurate and helpful diagnosis (PTSD). Despite multiple traumas, I had never received any treatment that was developed specifically for PTSD, such as exposure therapy, cognitive processing therapy or EMDR.

Because I’d never been properly diagnosed, I wasn’t getting the help that I needed. The root cause of my anxiety and depression was not being addressed.

And of course, when I discontinued my medication, no one recommended vitamins or supplements to help with withdrawal. Stopping psychiatric medication causes withdrawal. Some meds may have serious withdrawal effects when you stop taking them, if you don’t do it right and with the help of a doctor or CNP.

There are many supplements that help with anxiety and depression. Magnesium is safe in pregnancy at moderate doses and is well-known for reducing anxiety. Recently I started taking magnesium, and found it cuts my baseline anxiety in half. No one recommended trying it when I went off my medication.

About three months after tapering off medication, I had a very bad episode of anxiety and paranoia, and asked my husband to take me to an area mental health treatment center.

While there, I became very anxious whenever he came to visit. I didn’t trust my husband – which often happens in relationships where one or both parties are trauma survivors. The medications I was on for bipolar disorder and the talk therapy I was receiving were not helping with anxiety.

Paranoia, anxiety and trust issues are very common in PTSD.

The center where I was an inpatient is a wonderful place, with an incredibly talented and caring staff. My independent psychologist was a good clinician. They did their best, but failed to recognize, diagnose and treat my PTSD.

At this point, I was coming to the conclusion that no one I had seen in Cincinnati was really seeing me. They couldn’t see me because they couldn’t see past a bipolar disorder diagnosis. My clinicians knew the details of my traumas, but never recognized the sexual abuse and rape as events that could cause PTSD – the root cause of my anxiety and depression.

During 17 years of on-again, off-again psychotherapy – including 10 years where my only diagnosis was depression – no one had looked at the abuse that triggered my depression and said to me, “Sarah, you might have Post-Traumatic Stress Disorder. Why don’t we see if that’s part of the picture?”

Fighting for My Life
I told my treatment team at the center that I thought we should explore PTSD. Yet in all my meetings with psychologists and psychiatrists, no one asked me any PTSD survey questions. I didn’t know there were PTSD survey questions, because I was trusting my team and not investigating PTSD diagnosis and treatment online.

After a total of 6 weeks – 2 weeks on an inpatient unit and about 4 weeks on a private-pay wing ($40,000 on credit cards) I was still anxious and depressed. I started having nightmares, and crying a bit each day, which is completely out of character. I felt isolated and alone. The best place in town couldn’t help me. It was time to go.

I contacted friends in cities that had PTSD treatment centers, and several said I could stay with them, including my friend Tara in Los Angeles. Searching online, I found a psychologist in training there who would accept Humana. No one else I contacted took my insurance, and I couldn’t afford to pay cash. This psychologist was nearly finished with his PhD. Which made me nervous. But he had worked a great deal with civilian survivors of abuse, and members of the military diagnosed with PTSD.

I made some calls and was told my health insurance was accepted at several PTSD treatment centers in L.A. When I discovered that UCLA was a PTSD research center, I was thrilled.

When my care team at the psychiatric treatment center realized that I wasn’t going to stop asking about PTSD, my social worker suggested I go to another private-pay PTSD treatment center in Florida. I had just spent $40,000 for treatment here in Cincinnati. Shouldn’t that have been enough?

Time Spent in Los Angeles
I knew that this journey would be hard. I also knew that it was a journey I had to take. My husband was confused – why wasn’t I getting better? Why wasn’t I trusting him? I knew that I wouldn’t get the treatment I needed unless I left Cincinnati. We separated, and I drove west with my computer, work files, and my medical records. My plan was to get treatment in LA while continuing to work as a freelance writer.

My L.A. psychologist first diagnosed me with depression. I was in a favorite city, living with a good friend, nestled in the valley I’d come to love on previous visits, yet I was depressed.

There was no bipolar spending spree, no bipolar disorder-induced risky behavior, no sleepless nights, no partying, nordrug binges, no hanging out with nefarious people. No fear of travel nor fear of unfamiliar places, which many clinicians have told me is common in people diagnosed with bipolar disorder.

I went to LA to find help, and get better.

Even with all my privilege and resources – a friend to stay with, money for bills & therapy, a job that kept money coming in – finding an affordable day treatment center in for PTSD in Los Angeles proved impossible.

When I went to several and had them run my insurance, I learned that Humana would cover only 20 percent or so of treatment costs, which ranged from $5000 to $15,000.

The Point of No Return
I shared all my medical records with my L.A. psychologist. Three months into treatment, he diagnosed me with PTSD. We started to work on that through exposure therapy. He was very skilled, compassionate, patient, kind and helpful.

I continued to take medication for bipolar disorder, prescribed by a really awful revolving-door psychiatrist (the only one who took my insurance) during 15-minute appointments. Streams of very sick-looking people flowed in and out of his office. I knew this wasn’t good treatment, but it was all I could afford.

When I wasn’t in therapy, or spending time with my friend, I was working as a freelance writer. I got up early to call folks on EST for interviews. I enjoyed writing healthcare articles and interviewing doctors for new website for Ohio State University’s neuroscience division. I had two networking meetings with employees at Los Angeles Children’s Hospital. One yielded a job opportunity.

Tara and her friends were wonderful. They welcomed me with hugs, diversions and boundless encouragement. We hiked in Topanga Canyon, spent weekends at the beach, and saw movies that would never play theaters back home.

During my first week in L.A., a friend whom I’d met back in Ohio while working on the HGTV show Vanilla Ice Goes Amish invited me to her birthday party. Her family welcomed me with hugs, like a long-lost cousin.

I fought depression for seven months, but lost the battle. I started spending my days in bed, and stopped seeing my psychologist. I continued taking medication for bipolar disorder, but it wasn’t easing my depression. I hid my decline from everyone.

With depression, there is a point of no return where you can no longer help yourself. Just before Thanksgiving, I took all the pills I had and passed out in my bedroom. Tara found me when she came home from work and called 911. Then she called my father.

My Father’s Voice
I’m not sure how long I was out. My friend told me it was two days. I didn’t dream. There was nothing but blackness. A man rolling a noisy cart through the ICU woke me up on day two. I didn’t know where I was or if I was still alive. A nurse asked me if I was anxious. I nodded my head yes. She asked if I wanted some Ativan. I nodded yes again. She injected more than was necessary, and I passed out.

On the third day, I heard my father’s voice. “Sarah, it’s your Dad. Sarah.” I was afraid of what I might see if I opened my eyes. But I felt my Dad’s presence, so gave it a shot.

As usual, I couldn’t see shit without my glasses, so figured I was not in heaven. There was one person-shaped ball of fuzz with grey on top. Dad had flown across the country to be with me. And another person-shaped ball of  fuzz with black hair: Tara, who had saved my life.

I tried to say that I was sorry. There was a tube down my throat, so nothing came out.

A Second Chance
A few months prior to my suicide attempt, my husband and I had decided to divorce. Six months after I returned to Cincinnati, we got back together.

We remarried at the courthouse. The same judge who granted our divorce married us the second time ’round. We were embarrassed, but the judge put us at ease: This was the second time she had divorced a couple, then remarried them later. Probably not due to the same set of circumstances.

Finding Trauma Treatment
In October 2015, a family crisis during my Dad’s divorce from my stepmom proved incredibly stressful. Knowing I needed something specifically for anxiety, I called several doctors. No one would prescribe an anxiety medication on a weekend – even though I had been prescribed one in the past, and never had addiction issues.

I contacted the psychiatrist on call at a local psychiatric treatment center (where my CNP was based and I was already an outpatient). The psychiatrist on call told me that he couldn’t prescribe anxiety medication over a weekend. He suggested that I go to an emergency room if things got worse. I wanted to keep things from getting worse, and not have a costly ER visit and/or hospital stay. I told him this, but he refused to provide medication – not even two pills to tide me over until Monday.

I also spoke with my psychologist that day, and told her that I couldn’t get any anxiety medication. She suggested I take a walk, but I was too anxious to leave my home.

The anxiety started on a Saturday. By Monday, things were so bad that I asked to be admitted. I was on an inpatient unit four days, and again had nightmares and anxiety – despite being on medication for bipolar disorder that was supposed to help with anxiety.

The next day, a staff psychiatrist diagnosed me with PTSD. During our meeting, he asked if there was anything I needed. I asked if I could try a medication for anxiety. The psychiatrist reviewed the benefits and risks of Lexapro, and said I could try it while there.

It’s the most beneficial medication I’ve ever taken for anxiety and depression.

Recovering the Satellites
For three months I went to once-weekly therapy sessions at The Stress Center, a PTSD clinic at The University of Cincinnati. The program was covered on my insurance. (As of this writing, they also accept Medicare and some Medicaid plans.)

My Stress Center psychologist was the first clinician who truly saw me.

It’s taken a lot of hard work, and that work is ongoing. But I’m in a good place and am happier than I’ve been in years. I’ve found the strength to face my fears, identify stuck points through Cognitive Processing Therapy. Like many survivors of abuse and sexual assault, I had spent most of my life trying to please everyone. Now, I say yes only when it works for me (most of the time – that part is still challenging). I stand up for myself on a daily basis, and in crucial conversations.

One thing I learned at The Stress Center is that if therapy is really working, there should come a day when you no longer need it. That was the first time I’d heard that there should be a starting point and an ending point for counseling.

It’s been 13 months since I graduated. I’m doing really well, and haven’t had extreme anxiety nor panic attacks. For two years, I’ve taken only one medication. It’s an SSRI that helps with anxiety and depression, and is used to relieve these symptoms in PTSD. There is no single drug that can effectively treat all of the symptoms of PTSD. But some can help. When medication is combined with the right trauma therapy, complete recovery from PTSD is possible.

During my last visit with my CNP, she said that I no longer need medication. My first thought was: Is this a trick question? Also, what if I experienced extreme anxiety again on a weekend, but didn’t have any medication? We came up with a few solid solutions for that problem. I said I’d think about it.

Spotlight
One night, while I was in trauma treatment at The Stress Center, my husband and I watched Spotlight, a film about sexual abuse by priests in the Catholic church, and how The Boston Globe broke the story.

It was empowering to know that survivors from around the world came forward to talk about the abuse they endured, in order to help others. Survivors, and eventually Globe reporters, fought long and hard so all victims and their families would have a chance at justice and closure.

At three in the morning, I woke up thinking about the movie, and felt alone. I wished that someone had fought for me when I was four years old. I wished that someone had fought for a PTSD diagnosis for me, when clinicians were putting me in all the wrong diagnostic boxes. I wished that someone had diagnosed me with PTSD from the get-go, so I could have started living this full, glorious life much earlier.

Then I thought of something from my trauma therapy sessions. When I expressed sadness or anger over the years spent looking for the right treatment, my therapist asked me to list some of the things I’d done to help myself.

This is what I came up with, and what I returned to at 3 a.m. that night:

I stopped the abuse. I found the root cause of my depression and anxiety. I found the right treatment, and it worked.

I have fought long and hard for me. And I have won.

 

Resources:
The University of Cincinnati Stress Center
NAMI Southwestern Ohio
UC Health: Integretive Medicine
The Cleveland Clinic Center for Functional Medicine

The Body Keeps the Score: Brain, Mind and Body in the Healing of Trauma
by Bessel Van Der Kolk, MD

The Dance of Anger: A Woman’s Guide to Changing the Patterns of Intimate Relationships
by Harriet Goldhor Lerner, Ph.D.

Trigger Points: Childhood Abuse Survivors Experiences of Parenting
by Joyelle Brandt and Dawn Daum

Recovering the Satellites
by Counting Crows
This song is probably about drug addiction. I’ve never experienced drug addiction, and never had a desire to use hard drugs. However, most people who become addicted are numbing or distracting themselves from pain caused by trauma. Their trauma often goes untreated. I relate deeply to the long journeys through our medical system that many trauma survivors endure. As Adam Duritz sings, “It’s a lifetime commitment, recovering the satellites.”

Thanks to:
Philip Argyres and family, Phil Hawkins, Elizabeth Bolduc and the Bolduc family, Tara O’Donnell and the O’Donnell family, Kandarp Patel, Fernando and Vicki Pombeiro, Alyssa Ulrich, Karen Sottosanti, Greg Gayle, Lara, Malcolm, Bess and Mae Whitely Hooper, Linda Whitely, Kelli Crew, Pat Frey and many friends at Cincinnati Children’s Hospital Medical Center, Joe & Allison Sterrett-Krause, Melissa Myers and family, David Meredith and Clifton United Methodist Church, Jim Bodle, Mike Merry, Bettina Myers, Elizabeth Keller, John Boney, Megan Brown and the Brown family, MUSE – Cincinnati’s Women’s Choir, NAMI-Southwestern Ohio, Good Samaritan Hospital, The Cleveland Clinic Center for Functional Medicine, University of Cincinnati Medical Center, The Lindner Center of HOPE, Cal Adler, John Beradino, Janet Castellini, Richard Gilman, John Hawkins, Mark Hyman, Paul Keck, Rena Mei-Tal, Mary Miller-Wilson, Lauri Nandyal, Mary Jo Pollock and Melissa Young.

 

 

 

 

 

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