Creating a Culture of Healing and Empathy

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Annaka’s Blog

Healing Through Social Media

I was hesitant to join facebook for many years. (I have this issue with making sure I’m not “trendy” – no facebook, twitter, or hashtags for me, thanks. By the way, I am using all of these now). I finally gave in to facebook after it reached 1/2 billion users. Since joining facebook, I have joined a few debates where I left feeling more angry, annoyed, exasperated, etc. Sometimes I’ve gotten caught up with reading negative stories and comments, which always leave me feeling worse. I often think about the usefulness of spending time online and sometimes feel shame and start criticizing myself for sharing too much. These experiences remind me of a recent article I read on FB about how everyone is angry all the time, so we go online to express our anger, and become more angry.

After some recent reflecting, I realize how great social media has been for me. For me, the good far outweighs the bad. Social media has pushed me in ways I never thought possible and for that I am extremely grateful. My struggles have changed my entire life and as I’ve shared some on social media I realized social media sites don’t have to be a negative experience.

I have been trapped in a body and mind behind barricades stemming from sexual abuse starting when I was 9. I grew up feeling like the way to show strength was to keep private things private, cope with things on your own or bury them, don’t let people see you struggle. This was my mantra. I coped with my continual physical and mental struggles by putting up walls and not letting anyone in.

When we learned of our son’s disease (Tuberous Sclerosis Complex or TSC), I felt broken. I was mad at my life and felt it was unfair. I wondered how this could happen to me after all that I had been through. Throughout the following years I started to gain strength knowing how much I had already endured in my life. I’m not yet to the point of being able to say I’m grateful for my struggles, but I’ve started to see them as a necessity in preparing me to be Nami’s mom.

Starting at age 4 months, Nami started to have life-threatening seizures. Over the next couple years things got progressively worse. By mid 2012 I was desperate. I spent every moment of every day and night fearing for his life and keeping on top of medications, appointments, tests, and surgeries. I felt such intense shame for not being a better wife and mother (especially to our 2nd son) and for not doing better at work. My world was crumbling all around me and I could no longer sleep, breathe well, or carry out minimal daily tasks.

When things were at their worst, I was so tormented that I began to fear for myself in a way I never had. By the Fall of 2012 I went to my first doctor appointment where I was actually able to acknowledge my depression and anxiety. I hadn’t let myself go there before because I was so worried about being a pillar of strength, which I thought meant coping with it all on my own. At this time I started my first blog (afteritsoaksin) where I shared some of our struggles of negotiating our lives with TSC.

A few months later, I saw a therapist for the first time. I started to acknowledge the sexual abuse and the potential impact it has had on my life. I began to feel like all my struggles were tied to the abuse. I started to chip away at the giant walls that have suffocated me. As I was able to start this process I opened up more and more online; first by being more involved with the TSC community and then being able to actually start writing about my abuse in the Fall of 2014.

I feared a giant negative backlash for sharing such personal experiences, for coping too publicly. But I kept feeling like I should continue on this path. I realized there was something about sharing my experiences online that helped pull me through some of my darkest hours. I was finally able to consciously admit that my life was hard for me and own it rather than telling myself how weak I was for not enduring things better.

My definition of strength changed as I started to be vulnerable and allow others see my imperfections and my struggles. It is liberating.

Despite my initial reservations of going online, I realize that my online communities have saved me. I’ve connected with families from all around the world who share in the difficulty of negotiating their lives with the rare condition of TSC. I have connected with countless survivors of sexual abuse who give me strength and a desire to live. I realize I am not alone in having a difficult life. Rather we all struggle and it’s through enduring our struggles together that we form the best kind of human bonds. The internet has made it possible for me to be in touch with people I would have otherwise never met.

I realize that the trials I’ve endured have helped me empathize with Nami in a way that wouldn’t have been possible without them. I have learned things from other families online that have aided me in finding the best possible care for him.

Most importantly though, being Nami’s mother has pushed me to learn to connect with others and to find my own healing, which in turn makes me more available to care for my children. People tell me I’m strong and that I was meant to be Nami’s mom. I know that Nami was perfectly made to save me.

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Cleaning Up House: Steps to Healing From Trauma

I’m living in a mess. Both literally…

Messy House

…and figuratively.

When a house is really messy, there are steps used to clean it. These are the same steps I’m using to heal from PTSD.

1. Recognize that there’s a mess. Our homes often get messier bit by bit. There are many areas that we may not look at for weeks. We may not even realize how messy things are getting. Then when we open up that closet, cupboard, etc. we see that it’s a disaster. Sometimes this recognition is so overwhelming that we shut the mess behind closed doors and try to ignore it a bit longer. Eventually we will have to face the reality of the mess if we want to get it cleaned up.

I spent a good 25 years not realizing I was living with PTSD. I didn’t remember any other way of living, so I couldn’t see that I even had horrible symptoms that had been building up for years. I had to take a step outside of myself and look in from a new viewpoint to see how much I was suffering. At times this recognition of my pain is so unbearable that I try to shut it out because I’m not quite ready to admit how bad things are. I eventually have had to recognize the reality of my situation in order to start to heal.

2. Start unpacking and make an action plan. When I find out how much clutter, dust, and grime has filled up my home, I need to start removing all the items from cupboards, closets, and drawers to get to it. I move furniture around so I can see all the dirty areas. I find and gather all the bills and paperwork I need to go through. After I clear all the mess out of the areas of my home, it looks like a tornado hit it. This is the messiest looking stage of cleaning. Even though it looks more disastrous than before, it’s actually progress toward getting a clean house. Although it feels overwhelming to see how bad things are, I need to decide how I’m going to tackle the messes.

Once I realized that I had a PTSD, I had to start unpacking all the clutter that was in my mind and impacting my body. I saw the anxiety, nightmares, and panic attacks. I identified the feelings of worthlessness and desires to die. I started to see the detrimental impact PTSD was having on me. I have found this stage to be the messiest and most difficult in my path to healing. Things get uglier before starting to get better. I am tackling my symptoms as best I can, but it is a long and arduous process. It is excruciatingly painful at times.

3. Start cleaning up bit by bit. It is after making a bigger mess that we can start cleaning out the areas of the house one by one. I use a variety of techniques and cleaning agents depending on the mess. These range from dusting, steam cleaning, vacuuming, sweeping and scrubbing. I use different cleaning agents such as Windex, disinfecting wipes, wood polish, and leather treatments. The progress may be slow at times, but as time passes the house gets cleaner and cleaner.

As I identify each symptom of my PTSD, I do my best to clean it up. I cannot fix everything all at once and the range of processes vary greatly. Some of the things I’ve tried (although not an all-inclusive list) are talk therapy, biofeedback, meditation, positive self-talk, psychiatric treatment, multiple medications, medical treatment, writing, talking with friends and family, sleeping, exercise, and eating better. What works to help one symptom may not work for another, or may not be enough for the next symptom. Sometimes I have to be creative in how I clean up these symptoms and use combinations of things to start to see improvement.

4. Enjoy how clean and tidy things are. One of the best feelings I have is right after my house gets a thorough cleaning. It’s a rare peace that I savor. I wish my house could always remain this clean.

I have finally started having glimpses of peace and calm. I experience these feelings when I have gone through this cleansing process. Once there, I wish I could feel that way forever.

Clean house

5. Maintenance. While the joy of a clean house comes, they can’t just be cleaned once and stay that way. After a deep clean there continues to be things to pick up and wipe up to maintain it.

The same is true of dealing with PTSD. Even when I feel better, I still have to tweak a medicine or take a break from things that induce stress in order to feel good.

6. The cycle continues. Sometimes life gets overwhelming and houses can get so messy again that the process needs to start back in step 1. Or maybe just one or two areas need specific attention. The cleaning process may not need to go through every single step. Sometimes problems are encountered as the cleaning begins again and so attention is diverted to work on new unexpected areas. As we uncover a mess, we might find out it is much worse that we thought. Sometimes an emergency problem occurs and we have to put what we’re doing on hold to deal with the emergency.

This past weekend I was sorting through our newly finished basement. I decided to tackle room by room to get things cleaned and placed in the proper area. Along the way I stepped onto sopping wet carpet. This took me back to stage 1 and had to recognize that this wet carpet was actually a problem. Then I had to change directions and work on a room that I didn’t realize needed my attention. I had to unpack an entire storage room and decide how I’d tackle the problem. When one idea didn’t work to clean and fix the mess, I had to find another. This took hours of labor that I was not expecting. I couldn’t figure out what was causing the leak. I used many towels to soak up the flood in the storage room and continually vacuumed up the water from the carpet. I set up fans on high to try and dry the carpet. The water kept coming and I continued to deal with the symptoms of the leak since I was unsuccessful at finding the cause. After moving an entire storage room around, I was able to find the leak and work to divert the flow of water to a drain. It was only then that I was able to really make progress in cleaning up the unexpected mess and getting the carpet dry. Days later, we were able to identify a broken overflow pump and water heater due to our water pressure being set at twice the recommended limit. This emergency needed to be dealt with immediately in order to prevent further damage. We had to get a new water heater and pump. These costs were unexpected and drastic measures had to be taken in order to clean things up.

flooded basement 1

Throughout my process of healing, I often uncover a new messy area. Sometimes the discovery is a huge setback which sends me tumbling down. I might get really discouraged, upset, and feel like giving up. I may get stuck back in stage 1 where I don’t even want to accept that I have the problem. I have to work really hard sometimes to uncover these existing “messes”. Sometimes my setbacks might not be as drastic. Sometimes I may be able to recover from my setbacks more quickly that other times. Sometimes I have a strong and unexpected trigger and have to put my life on hold to deal with the repercussions in order to prevent further damage. I feel like I am making overall progress despite triggers and setbacks. I don’t think things will ever get as “messy” as they were before I was able to accept that I suffer from PTSD. Now I hope to be able to get to and remain in the maintenance stage more often.

Our Abuser Died, Now What?

I just found out that our abuser died. I’m not sure how I’m supposed to react to this kind of news. My first thought was, “At least he can’t hurt anyone anymore.” That thought of relief is not entering my body though. Right now I feel like my stomach is being twisted in knots. My mind is racing.

  • What does this mean for me?
  • I know that I’m happy he’s dead, but how do I change my mind-frame to feel it?
  • Was I holding on to hope that he may one day be brought to justice?
  • Was that hope really such a big part of my healing?
  • If so, how far will this set me back?
  • What do I do now that he won’t have to pay for his crimes?
  • Have I really depended on seeing him pay?
  • He’s getting the easy way out.
  • So far my safe place has been that even if he isn’t brought to justice, I may still one day be able to face him. To look him in the eye and tell him that he may feel like he’s been able to fool the world, but I KNOW what he did to me.
  • How do I cope now that this is no longer a possibility?
  • Why didn’t the prosecutor take our case more seriously?
  • I’m so mad that the worst kind of crimes are often the ones that can’t be proven without solid evidence.
  • How reasonable is it to expect a 9 year old child to know that they should gather evidence while enduring abuse? And, that they are held responsible to face their abuser and prove the abuse happened?
  • Our justice system is so messed up.
  • Why is the justice system set up to protect the abusers?
  • I have had to suffer almost my entire life without feeling my rights were protected.
  • I no longer have the opportunity to write him a letter or express to him the consequences of his actions.
  • Will I ever be able to get past the triggers of my PTSD when I hear about him?
  • I thought I was so much further along in my healing to still be impacted so deeply.
  • He died one day after my birthday.
  • I already get triggers every fall (when the abuse first started). Will I now be triggered on my birthday too?
  • How will this impact his other victims?
  • Do they feel like I do?
  • Our goal in pursuing a case wasn’t just to get justice for us but for all his victims.
  • Will they be able to heal?

His funeral is tomorrow. I haven’t been able to bring myself to read his obituary yet. I’ve been told it says so many nice things about him. This upsets me, but what should I expect it to say? That he spent time in prison for sexual abuse? That he has not paid for all his crimes? That he’s an evil man? That his life is not worth celebrating? Should I feel guilty for thinking such horrible things about another human being? How do I reconcile that others may view him in a positive light?

I’m sick. I hope that this too will pass. This ignites my desire to speak up even more, to help change the world for other victims.

-Annaka

Agony-Aunt3

The Cave: PTSD Nightmare Stories

inside_the_cave_by_kanijonas-d4uv0hr

There was a little girl in a cave. She was a cute little girl with long blond ringlets, wearing a pink dress and white shoes. She was carrying her doll, who matched her perfectly. Although the cave was big and dark, this girl was happily skipping around and singing. This particular cave had a voice and talked with the girl. They laughed back and forth and really enjoyed being together. Some time into their playing, the cave came up with an idea to play hide and seek with the little girl. She happily obliged. He started counting from 1 to 100. He got to 10, and she was still skipping around and laughing. At 20 she playfully looked for places to hide, but unsatisfied, she continued to casually look for other options. At 30 she was giggling as she played with her doll and laughed with the cave. This continued on until the cave reached 60 when the girl realized that she wasn’t playing hide and seek with the cave, but actually needed to find her way out. Although she was a little nervous, she wasn’t too scared because the cave was friendly and they were playing. She felt she had plenty of time to get out. By 80 the girl started getting worried because she hadn’t found any light to indicate the cave’s opening. The cave’s voice started to get stern and a little scary. By 90, she was frantic as the cave’s voice boomed. His voice was so loud that the cave began to shake and drop small rocks.  She needed to get out. At 95 big boulders started to crash all around the girl, just missing her. At this point she had lost her doll. Agonizing sounds came from the girl as she frantically looked for her doll so she could rescue her. She was holding her hands over her head, screaming for the cave to help her find her way out. He just evilly cackled as he continued on toward 100. “96!” he boomed. She screamed even harder, tears streaming down her face. “97!” The shaking got harder and the girl could no longer breathe. “98!” The girl fell to the floor, knowing her fate. Scared beyond comprehension, she braced for her certain death. “99!”

I spring up in my bed in a sweat, heart racing, and gasping for air.

I didn’t die.

It was all a dream.

This is the most common of my frequently recurring nightmares I had as a child. The number of times I had this particular dream is countless. As a child I couldn’t figure out why I kept having the same nightmares over and over. I can’t remember when they began or when this particular nightmare stopped for sure, but I remember always expecting it to come.

When I woke up from my nightmares, I lay awake, imagining a thick metal shield that I could close over my neighborhood to protect it at night. I felt a lot of fear a lot of the time. I couldn’t shut out constant thoughts and feelings that something bad was going to happen.

I didn’t realize until after my diagnosis of PTSD that these nightmares were one of the symptoms I experienced early on. As a child I just figured that everyone had nightmares, so I never realized that my particular nightmare experiences may be a sign of something else.

I’m not sure how many nightmares a typical person has throughout their lives and at what point my situation is considered abnormal. Before I started therapy, I had gone years of not being able to fall asleep, even for a nap, without having a nightmare. I hated to sleep because I would wake up and then have panic attacks because the dreams felt so real.

My nightmares have continued to today, but I haven’t had the one about the cave since I was young. I don’t have exact recurring nightmares anymore, but the themes are always the same. I consistently find myself and/or loved ones trapped, in life-threatening situations, and being hurt. I have many regarding child pornography, sex abuse of children, and scary perpetrators. Since my nightmares feel so real, sometimes it takes me hours after waking to remember that it was just a dream and that I don’t need to feel stress or tense about the particular incident any more. I will often, throughout the day (after particularly frightening nightmares) all-of-the-sudden gasp for air as intense fear suddenly fills my brain, taking my breath away and causing my heart feel like it stopped. These are the moments that I have to consciously remind myself it was just a dream and that I don’t need to worry about it. The intense stress that I feel is so real that I often rack my brain trying to remember what bad thing had happened. Surely there is something REAL that happened to cause these feelings and physical responses.

Looking back throughout my life I realize that my nightmares are more severe at times of stress, which unfortunately is quite often as I have a son with tuberous sclerosis. I have intense nightmares at times of sickness, extreme depression, stressful life events, and during my pregnancies.

These dreams and memories carry so much more significance to me now that I know I have suffered from PTSD nearly my entire life. One of my hopes in telling this part of my story is that symptoms of sex abuse in children will be identified early so they can receive the help they need and not have to live within the chains of PTSD. Nightmares, accompanied with other symptoms, may be an indication of something else going on.

 

Rude Awakening: Symptoms of PTSD

A year and a half ago, I stepped into my therapist’s office for the first time. I was beyond desperate for help. I had constant thoughts of wanting to die because my life was too overwhelming for me. I had diagnosed myself as severely depressed and after trying some different medicines, I realized that medicine alone was not going to help me.

I spent the entire session sobbing as I erratically spat out as much of my life that I could fit into a 1 hour session. I told my therapist everything I could think of that I thought had a major impact on my life. I explained about my oldest son’s health condition, Tuberous Sclerosis Complex (TSC). I explained how I felt I couldn’t go on because caring for him seemed like an impossible feat. I shared with her how I had learning difficulties, which a school psychologist had tested me for in 4th grade. I talked about that process and how it impacted me. I told her some specific experiences I’d had with this psychologist. I explained how I had been sick most of my life from that point on with thyroid disease. How I hadn’t ever had many friends, that I was an introvert. How I had done some crazy things in high school, hoping that I would be killed in the process. How difficult it was to deal with life as I have seen my husband be discriminated against time and time again. How it had been a difficult road of 9 years before my husband and I were able to have our first child.

By the end I was pleading…well BEGGING: “I want this to stop! I NEED this to stop! I cannot stop obsessing over wishing for a terminal illness to take me or better yet, a meteor to strike our house so my family wouldn’t be left without me. I am so mean to myself. My thoughts are full of telling myself hurtful things and I continually bring myself down. I can’t handle the nightmares, the sleepless nights, the stress and anxiety, the panic attacks that seemingly come out of nowhere, the fear of what the future holds for my son. Can you help make this stop?! PLEASE MAKE THIS STOP!!!”

By then, our session had probably gone over time by at least ten minutes and I feared that I’d leave without having a solution. My therapist scooted her chair close to me and looked at me with such compassion and said, “Well, you meet all the criteria for PTSD (Post Traumatic Stress Disorder).”

There is no way for me to describe the shock I felt in that moment. I stuttered, trying to make sense of what she said and concluded, “Oh, because of everything I’ve been through with our son (e.g. constantly fearing he could die at any moment due to uncontrollable seizures).”

With tenderness she replied, “Well, maybe, but PTSD most often stems from something traumatic that happened in your childhood.”

“But I had a very charmed childhood. My family was financially stable, my mom took care of us, we always had food to eat, we lived in a nice house in a nice neighborhood. People constantly told me how ideal my family was. Sure I was sick a lot, struggled in school and didn’t have many friends, but other than that things were great. I mean, you don’t think that the school psychologist locking me in that room meant anything?”

She replied, “I really want to help you feel better. The good thing about symptoms of PTSD is that unlike depression, you CAN work to make them subside. If treated, you won’t have to constantly be dealing with nightmares and triggers that incapacitate you.” She then gave me instructions to purchase a particular book and look up some things online before our next session.

I left in shock. I couldn’t wrap my head around what just happened. I went in for help with my depression (which I do have by-the-way), but came out with so many questions. Questions about issues I had dealt with for as long as I could remember. Although I didn’t like that I was going to have a big battle ahead of me before getting better, I was equally grateful to have a possible explanation for certain things that had been a part of me for as long as I could remember. I thought, “Maybe I’m not crazy. Maybe I am worthwhile. Maybe I’m not stupid. This CAN get better.”