Saturday, June 23, 2012

Beating the Odds - My Story

As an individual who managed to survive years of horrific childhood events, followed by a cycle of self-abuse that lasted into early adulthood. I managed to pull life together in 1986 when I was 22 years old leaving substance abuse in my past. I'm feeling pretty fortunate thinking back. What people don't realize is the enormous amount of strength and control it has taken to live with Chronic Post Traumatic Stress Disorder (PTSD) my entire life.

Do you know those who suffer from PTSD are 150x more likely to be unemployed than those who do not? Fact.

I went on to be founder of Nation's Missing Children Organization in 1994 and then the National Center for Missing Adults (NCMA) in 2000 and managed over a $1 million in annual budget for the US Department of Justice assisting missing persons and their families. Regularly flying to Washington, DC attending meetings at the West Wing of the White House, serving on various task forces for the US Department of Justice, the President's DNA Initiative, National Institute of Justice and other government entities. Sometimes, I would be sitting there in a conference room literally pinching myself and asking how did this tattooed Street Survivor get here? As I was sitting with the head of the FBI, Colin Powell, and even Obama or on set in NYC with Montel Williams or John Walsh (two of my heroes). I would often ask myself, how the hell did I get here? Quite an accomplishment for a girl who grew up on the streets -let alone one who has PTSD. Half my childhood friends now in prison, deceased from overdoses or suicide and many of them came from good homes. One thing, I always reminded myself how important it was to NEVER forget where I came from. I would sometimes drive through the slum of Sunnyslope to keep myself real.

It took a commitment  to myself and incredible determination. I have spent years in various cognitive therapies with psychotherapists, psychologists, psychiatrists. Probably the most effective was Eye Movement Desensitization and Reprocessing treatment (EMDR) with a forensic psychiatrist, Dr. Shelly Uram. Of course my Blue Cross Blue Shield insurance didn't cover it so I also made a commitment to invest in my health. Nationally renowned and Harvard trained, Dr. Uram once told me I was one of the most horrific cases of abuse she had ever seen. She asked if  I would consent to her sharing my story without use of my name which I agreed.

I've gone on to share my story with female prison inmates who themselves are trying to beat the odds. I found an incredible connection there because I presented myself genuinely, loved them without judgement, and wanted to serve them. They are so used to being looked down upon by the general public with arrogant disgust. I tried to instill in them if they took responsibility, stopped the cycle of self-defeating behavior and committed to change they could accomplish anything. Looking at each of them I knew there was a past haunting them and I was one of the lucky ones who got out early. I could have easily been right there with them.

Though PTSD is not really curable and has been proven to be a debilitating condition for some, one can develop coping skills that allow you to function. PTSD is a psychological injury caused by a traumatic event and actually changes various components and functioning in a survivors brain causing physiological reactions. 

Years of living life traveling at relatively the same rate of speed as everyone else, I now look back - I guess I was at the height of my normal functioning back then. Now, I'm spending hours re-educating myself and seeking new ways to cope. When a person with PTSD spends years working with trauma survivors there are personal risks - for nearly two decades of my life working with those in crisis was a driving force for me. I loved being able to reach out and let them know they were not alone. I was born with Advocate DNA. 

Things have changed. Not my love of advocating but I've learned it is much harder to advocate for yourself and those you love. Recently someone I love was a crime victim and I have found myself spiraling downward. Feeling sick with nausea, my breathing stops or I experience hyperventilation unless I force myself to remain conscious of my breathing pattern and force deep breaths (something Dr. Uram tried stress the important I remain cognizant of), heart racing, sleeping disorder kicking back in, inability to focus, jumping at a noise on TV that causes tears to roll down my cheeks. This week I stood up, wobbled and woke on the floor alone wondering how much time had passed, confused, wondering if something terrible or terminal is wrong with me. Feeling hopeless. 

Of course we must adjust to living with impairment to the Hippocampus portion of the brain that affects short-term memory, bio-chemical changes affecting the nervous system, elevated Cortisol levels, lack of Serotonin, reduced immune function, accelerated heart rate to name a few.  As if there wasn't anough to worry about, knowing PTSD is linked to early mortality rates due to inflammation, cardiovascular issues, Cushing's syndrome, Chrohn's disease and the list goes on. Then there is social stigma attached to those who have PTSD as if we created the condition ourselves and can just get over it. Scientific studies show that is just not the case for those who would like to minimize the effects of trauma related experiences. Do I sound angry? I'm not really angry but I admit, I'm frustrated.
78 forcible rapes occur every hour yet most rapists go free.
Learn what rape victims are sentenced to. 

I have since learned someone with chronic PTSD can be re-traumatized when someone they love is traumatized and that must be what I am experiencing. I learned when placed in a care-giver role someone without any condition caused by trauma can develop compassion fatigue, vicarious traumatization, compassion stress, secondary traumatic stress, burnout. This is so much closer to home for me. Seeing someone you love suffering, knowing first-hand what living with that pain is like when you are a child, the inability to magically take the pain away is like tearing out a parent's heart. Since we experienced death threats following the crime and forced to move in anonymity - the fear we both have experienced is legitimate so I guess the hyper-vigilance setting back in is to be expected. I see so much of myself in her now . . . I don't want her to be 47 years old still experiencing the after-effects of someone's perversion. It's not my choice.

At a time I am supposed to be the solid one to help my child heal, I am showing signs of regression and doing my best to utilize that tool-belt of coping skills and methods of managing symptoms over the years. Everything I invested in me so long ago. I know I have to because I need to prevent my own child from living a life battling an injury caused by someone else.

My problem, asking for help. I have always been the supporter. When Hurricane Katrina happened and the US Attorney General Alberto Gonzales requested my agency assist the victims over age eighteen, I didn't hesitate to take my agency into the war zone. My former NCMA team kicked ass! We served over 13,502 families, resolving 99.8% of the cases. The result - it wiped out my agency's financial reserves of nearly $400,000 in non-federal funding only to be eventually reimbursed $50,000 from the government. What did I do? I sold my rental home and paid salaries to keep services going because the phones were still ringing with families on the other end needing help. I eventually took out a $70,000 second mortgage out on the home I was living in and plunged that into my company to keep it going . . . I have copies of the checks I wrote from my personal account for $10,000 - $15,000 at a time. Eventually I had nothing left and had hit burnout. It was all well-publicized on CNN, MSNBC, New Times, and others. The reporters said I was crazy. No, I'm not a quitter and I don't abandon people I made a commitment to. The rest is history because  I'm no longer with the agency after going into a merger I thought would expand services to families of missing persons. I left in January 2010. I grieved the loss of it like it was one of my children. Knowing now what I know today would I have liquidated everything I owned to keep my agency afloat? I have to say yes - we abandoned not one person and that I will remain proud of. I remain honored to have worked with the former NCMA team. They were such amazing individuals. I feel the loss periodically because I miss everyone I once worked with and those we served.

Recently, someone hacked my Linkedin account with years of professional contacts, erased my last twenty years of work, and replaced it with my occupation as a Pole Dancer at Pole Dancers USA. I was never so graceful but at 47 I will take that as a compliment. If I recall, it said I was mental and they assigned a felon number 456789, never a felon though going to jail for marijuana at 22 did change my life. This is why I volunteered at Perryville prison to share my story and give other women hope. They mocked my daughter's rape because I have shared the struggles we have faced. I have had few, if any enemies in 20 years, and only one with the abilities to hack an account. Just think, if this person who attacked me hides under the public veil of helping others, God Help Us All! I would never be so cruel as to mock one portion of another persons life and try to damage them publicly. True under-handed evil in my book. But it made me think. We all have a story, we all will find ourselves in need one day and I WILL NOT not be embarrassed about any portion of my life.

Now, I am in a position where I'm on the other end of the spectrum. Dealing with crisis in the aftermath of crime. My own child a victim. The physical and emotional toll and feeling helpless to help my own baby. Did you know suicide rates of children between 15-24 is the third leading cause of death in the US. Yes, I feel I'm fighting for my child's life and I'm struggling with a condition that I feel is hindering my fight. Will I admit I'm human? Yes.

I'm a fighter. I don't feel sorry for myself. In fact, I wouldn't be the person I am today in my heart had I not survived my childhood. I'm okay with that because I can't change it and I know I am a more compassionate and empathetic person because of it. My experiences humble me, although I admit they have not ever quieted me and I remain outspoken on issues that matter to me. We can't change anything if we simply look the other way. I know I represent others who find themselves struggling and the field I have worked for nearly two decades has been a constant reminder that things could be worse.

Now on the other end and my own family needing advocacy - I'm an advocate without an advocate. I find that ironic. Calls to every local, state and federal agency telling me to call the next, only to be told to call another. Telling and re-telling our story only to re-traumatize my own daughter if she overhears me on the phone trying to explain what has happened to the person on the other end. Crime victim relocation? Well, someday they will pass that resolution and it will help another family try to keep their child from further harm. Loss of work? Victim compensation doesn't cover people who have been self-employed for twenty years. Hospitalized? Called a family member across the country pleading for help because I made a choice between staying by my child's side or leaving for 9 weeks three hours away for job training to take a position with AZ Dept. of Corrections. What would you have done? I have to think they just don't understand the severity of what has happened out here. I would just like to know where are the services that help families get through this? How many other families are out there who are in the same crisis? We are but one family out of millions.

For those who have helped, prayed and who have called or messaged to just see how things are going. You know who you are and we are forever grateful. Things just don't bounce back to normal after a life-altering event and this means I will not quietly go away without addressing the need for improvements in state crime victims assistance programs and for others to learn about other's battles in life and try to become more of a community in mind, spirit and body. 

This month is PTSD Awareness Month. I urge every single one of you to learn about it. Learn about living with a stigma because people don't get you and your reaction to crisis because let me tell you no one is immune. No one is immune to trauma's detrimental effects in your life, the isolation one feels, the ability or sometimes inability to deal with additional stress or trauma.

Learn and pray. Pray no one you love is ever the victim of a senseless act of violence that leaves someone 'you love with all your heart' fighting from falling into the abyss of pain, shame, violation, loss of safety . . . fear and a lifetime forced to beat the odds. Then please pray you too do not have a condition that is sometimes incapacitating. Don't forget to pray there is someone there as you fall or when you hit bottom you have the strength to get up one more time.

Remember PTSD is not about what is wrong with someone - it is about what happened to someone!

For those that want to know us better here is  a very informative article