March

It would be interesting to have each of my siblings describe their experience of the week that my father died. It was the first time since my sister’s wedding ten years earlier, that all four of us were together for any length of time. And yet, there we were, keeping a five-day vigil at my father’s hospital bedside.

It was fascinating and frightening to watch my father move through the stages of dying. He was quite lucid as he called each one of us to his bedside and asked permission to die. He didn’t ask for forgiveness, or apologize for hurting us; he just wanted permission to die. As the doses of morphine increased he began to go in and out of consciousness.  He was seeing and talking to his deceased family and his beloved cat. These were all ghosts to us, but they were real and comforting to him. For two days before he died he held conversations with his mother, who had been killed in the war when he was seventeen years old. Eventually, he spoke only in Hungarian, his first language.

He struggled to die. Part of that may have been the morphine, but he seemed to have a need for closure with certain people before he could let go. The day before his death, a steady stream of people came and went, said their goodbyes, and he fell into a deep sleep.

Once he drifted into that sleep state, we were told that he would probably die within a few hours. We opted to stay in the hospital that night and wait. Each of us was dealing with our father’s death in our own way, and nobody was talking to or comforting one another.

Once a year while we were growing up, my father had made us sit in a line on the couch and recite, “See no evil, hear no evil, speak no evil” while he took pictures. Waiting for word of his death we seemed to be recreating those moments, sitting in a row staring blankly into space.        

My sister Lucy loved my father with all her heart. He was always her daddy, and she was grief-stricken that he was dying. She spent a lot of time in his room feeling an otherworldly connection to him and reporting many sightings of his mother. My brother, Thomas was filled with guilt for never living up to the rigid standards that my father had so often reinforced with his fist.  Thomas’ mix of guilt and grief was making him angry and contentious. Adam hated my father too. He could never live up to the impossible standards that had been expected of him either. He was distant and off in his own world; silent and withdrawn.

I felt a lot of ambivalence about my father dying. I had watched him struggle with three rounds of chemotherapy and had seen the disease ravage this once very powerful man. I didn’t want him to suffer any longer, but at the same time his suffering was the only restitution I would ever extract from this man who had abused me since I was a baby.

When I moved to Minnesota, he and I had spent countless hours together. He taught and then quizzed me for hours about national and international politics. He spent a lot of time telling me his life story.  He seemed anxious for me to learn his past so that he wouldn’t be forgotten by his future grandchildren. My father’s entire family was killed in the Holocaust and he carried immense survivor’s guilt. It was confusing for me. He was unbelievably abusive to me and yet I felt compassion and respect for his life story. I would have preferred to feel a neat and clean hatred and disgust towards him.

Early the next morning, the rabbi on the hospice team came into the room to talk to the four of us. Rabbi Lyon had spent many hours talking with and comforting my father during his extended hospital stays. The four of us siblings were exhausted from lack of sleep and the endless waiting. The air was heavy with grief, confusion, and boredom. The rabbi told us he wanted to relay a few words from my father to each of us.  I had an instant distrust of this man when I met him, and that day, chills ran down my spine when he began to speak.

He stopped first in front of my brothers and told them that my father loved them very much. He knelt down to my grieving sister, took her hands into his and began telling her how much my father loved her, how much my father spoke of her and that he himself would be there for her in her grief.

Then he walked over to me and without a moment’s hesitation said, “You are our tough little shit, and you will be fine.” He walked away. I felt three things simultaneously: hurt, rejected, and a profound sense of dread.

excerpt from my memoir Untangled, A story of resilience, courage and tripumph

 

Effects of PTSD on my family and friends

I’m going to be presenting at a conference in February on living with courage and resilience with PTSD. While working on my presentation, I began thinking about the effects this illness has had on my friends and family the last seven years.

One of the reasons I continue to write and share  is because my PTSD symptoms still have a pretty good choke-hold on me and I want to bring awareness to complex PTSD and what it feels like to live with it every day. As with many mental illnesses, PTSD can be fairly invisible on the outside. The shift in my functioning once I couldn’t repress my memories any longer was pretty dramatic. But physically there was no altered appearance. Often with such a sudden onset of symptoms in an illness we expect to see changes on the outside. Most of us, are used to seeing the physical manifestations of being ill (a pained look, a limp, weight loss, pale)  my friends and family were having a hard time understanding what was going on with me.

I had always been the master of wearing many masks, and deflecting any conversation away from me, always with a supportive smile for everyone, and a reach out to me if you need something demeanor. Never, expressing a need for the same kind of support of my own. But when I couldn’t hide my illness any longer, my friends wanted to reach out and help me. I couldn’t help them, help me because I didn’t know what I needed. All I knew was that I was going crazy, and there was nothing anyone could do to help me. I didn’t need food, company, or phone calls. I needed someone to stop the madness inside of me. One day, while haveing breakfast with a friend, she expressed her helplessness at not knowing anything about PTSD and asked me “what does it feel like inside?” That question stopped me for a moment. I couldn’t find the words to tell here or to explain it, so I wrote a poem (My PTSD) and that was the beginning of sharing some of my writing, but more importantly, it gave me a safe and effective way to share with others and help me begin to understand in a fairly objective looking way how PTSD affects me on a day-to-day basis, and how the symptoms changed my way of living in the world.

My symptoms include (not limited too) flashbacks, concentration issues, becoming overwhelmed and my brain shutting down, not being able to make choices, anxiety/depression, hypervigilance, and sensitive to the triggers that start the whole shebang of symptoms. We use the term, triggers, triggers everywhere.  Like a lot of people, I’m triggered by anniversary dates and other events, but because my situation was so pervasive and went on for so many years, in so many places often regular outside noises can initiate a flashback. The wind can blow a certain way, or fireworks, or a car backfiring, even the moon can bring on flashbacks. Ugh!  right?!? But those symptoms and my reaction to them often involve my family and friends to recognize what’s happening and patiently either wait or help me through them. For a rock of a person, who never needed any help in any situation…well, you can imagine how discombobulating that can be for myself and others.

Unfortunately, my symptoms have left me with the inability to work. I went from having a wonderful career with the fringe benefits that provided me with some semblance of  comfort for the future and the ability to provide for my family to  only being able to work about 2 hours a day…on a good day. I simply can’t concentrate, do more than one task without interruption and my startle response can be off the hook sometimes.  The one thing that doesn’t seem to be damaged is my ability to use my higher level thinking skills. I have been fortunate to be able to continue to help with marketing ideas for small businesses, and help with recruiting efforts. And also, I’m able to write and have the desire to talk about this topic in public.  As long as I’m careful and don’t push past the point of my brain shutting down, I can recover and have a pretty good day. If I do push myself then I can be down for the count for several days in a row. It seems as if my symptoms (depending on the time of year) can start a chain reaction, so I needed to learn to work within my deficits. This isn’t easy or comfortable for me and because I’m still pretty new at learning how to work within my symptoms, I can find myself becoming frustrated and angry at my PTSD! Honestly, most days, if I’m going to be honest, I am VERY angry at my PTSD. But then I settle down and think about what I want for my life and try to rest and reset.

At the beginning of my PTSD symptoms, my family was just as confused and upset as I was.  No one knew what was happening and everyone was handling it in their own way and alone.  Our once “the Four of us against the world” family unit had deteriorated into everyone for themselves in a ship that was sinking faster every day. It was a shift in our family dynamic that none of us ever expected and we didn’t know enough at the time to get help for the family unit.

My symptoms have definitely affected my family and they still do today. I went from the grounded beacon to becoming almost totally dependent on them. I have been able to maintain a “mom role” and thank goodness my children are now in their twenties, but it’s difficult to know that my daughter is not only my daughter but one of my caregivers. She is the one who can tell right away if I am having a “bad day.” Among other things, she knows where I can look on a menu so I don’t get overwhelmed by choices, she can tell if I am in over my head and can tell if I’m triggered. My son, who I think had the biggest problem adjusting because mom wasn’t mom anymore, has grown into taking the responsibility of managing anything that is concrete and sequential. He’s a teacher by profession and he feels best when he can problem solve a problem for me. My husband has been wonderful and supportive and picked up the slack when I couldn’t. But our dynamic has changed too. He often sleeps in another room because my screaming nightmares, wake him up. He has to get up at 4:30 am for work every morning, so it’s imperative that he gets his sleep. But that has had a huge effect on our marriage. These are just a few examples on how PTSD symptoms have affected my family and friends.

It’s all okay, and it’s all not okay. My family dynamic has changed, and that happens. When you are the reason for the change it’s a slippery slope from feeling like a burden to feeling like this is what happens in life and we adjust.  I also want to be honest when I speak and write on living with courage and resilience. Like any disease, PTSD doesn’t just affect one person, it affects all those in your life who care about you and love you. It’s something I’m aware of every day, it’s something my family and my close friends are aware of and it can be an uncomfortable, but never dull life. I’m sure if asked, my family may pick dull….but maybe not.

 

 

 

 

 

 

 

A cloudy week of PTSD

I want to wrap my brain/mind and myself in a straight jacket, cover it with honey and be put in a room with puppies so that I feel the happiness of drooling slimy puppy breath that brings smiles from oozing love.

I want this new person that I sometimes don’t recognize and feels like a shadow to go away and give me room to  continue to become the person I was feeling good about working on last week. Even though I didn’t know who I was becoming, at least I felt whole.

I want to deep breathe naturally not because I find myself holding my breath as I come out a flashback.

I want to ease the pain in my body that I know is not really there, but is there because of body memories. How about some medicine for the pain in my psyche that feels so bruised and damaged?

I want to be able to have a conversation with someone that doesn’t sound like I’m speaking through a plexiglass partition, wondering if that is really my voice saying those words; I wonder if the person knows I’m triggered?

I want to know that my pain-filled, mixed-up, fragile brain will settle down and I once again will be able to get back to the business of healing.

I want to know that this week is just a glitch. That I will once again be moving slowly along the scale of fucked-up-edness and that this feeling of sliding into the abyss of PTSD will end and I will not become a sad statistic.

I want to know that even though I don’t have the strength of mind, body and emotion right now that I am still mega-tons stronger than any abuser that ever tried to kill me physically, mentally, emotionally or spiritually!   

It’s been a cloudy week of PTSD!

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My PTSD

Because my wounds are not visible, people often ask me, “what does it feel like to have PTSD?”  I wrote this poem to explain what it feels like for me to live with post-traumatic stress disorder.

My PTSD 

my PTSD

It doesn’t matter if it’s cold, hot, sunny, snowing  or raining.

There is no telling when it is going to strike

Are they alive or dead?

Is that pain real or echoes from pain long ago that

Resurface with a memory?

It’s like being held hostage by your mind.

Thinking that today would be the day I am free.

I look like everyone else.

I know the difference between right and wrong.

Yet in my head I often can’t remember

The last ten minutes of my life, or what day, year or time it is.

Are those smells real or is that a smell from a place and time

when I was being held against my will.

Am I really hearing the sounds of helicopters, planes, cicadas or birds?

Or it that the sound coming from a place that no longer exists and

Should never be talked about?

I want so much to be like everyone else.

So I will keep pulling myself up the rope,

Out of the clutches of PTSD and all the skeleton hands of the past that

Keep trying to pull me down.

I am like everyone else only my job is to live, so I CAN live.

That is all I can ask of myself if I am going to have a future.

                                               Alexis Rose

https://www.facebook.com/Alexis-Rose-700444583389087/?ref=hl

If I Could Paint a Picture

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My body is streaked with sweat and dirt from my desperate search to find safe shelter. I’m barefoot, in a grimy torn t-shirt and shorts; my hands and feet caked with dirt. My hair is filthy and matted. My mouth is dry; I can smell and taste the gritty dust that hangs in the air. I sit down on a curb at the side of the road, and I know it’s over.

I’m unbelievably weary, all my energy spent in the act of sitting down. I’m devastated…emotionally, mentally, and physically, and the worst of my wounds are invisible. My eyes fill up, but no tears fall. I can only sit amid the rubble, trying to trust the safety of the gray, silent sky.

Six years later, the scene has changed. I’m no longer living in fear of the tangled web of sadistic people who use threats to keep their victims terrified and questioning their sanity. I feel grateful. The therapist that I call my Sherpa is sitting next to me. He’s listened to and witnessed my entire story, and never deserted me. He understands my journey and sometimes shares my grief. He’s helped me honor my resilience; taught me the value of telling my story and the importance of just sitting with my truth. So we sit here together, quietly resting in that truth.

I’ve fully remembered and told the story of my first twenty years, of surviving the abuse, neglect, abandonment, and fear. I’ve left behind those who terrorized me. I’ve untangled myself. My courage has set me free, and now nothing can keep me tied to the past. I can truly live today with blinders off and eyes wide open.

From the introduction of Untangled, A Story of Resilience, Courage, and Triumph

http://www.facebook.com/Alexis-Rose-700444583389087/?ref=hl

The Courage to Speak the Truth

About seven years ago I made a commitment to myself that I wanted to live not just survive. (my personal legend)  I knew the difference between the two, as I’m sure most people have their own meaning of what  surviving vs. living is. I was clear. I knew that I couldn’t begin to fully live if I didn’t try to recover from my past trauma. I couldn’t connect to the world, be a role model to my children or release some of the PTSD symptoms that had a firm chokehold on me if I didn’t fully commit to myself; which meant having the courage to speak my truth. Even after seven years there are days when this feels too big to conquer, but my personal legend is tremendously important to me. It motivates me during the most difficult moments of every day.

I’m still learning and accepting how much my past trauma impacted every aspect of my mind and body, spirit and soul. I’m in therapy, I read, I have a magnificently supportive family and circle of friends, and I continue to seek out and build a network of people who live, grow, and change with the season. I keep my eye on my goal.

In the fall of 2014, I had an amazing experience. I had finished my first draft of Untangled. I had written the truth. I decided to publish the book for a few reasons. I started to think that maybe others who were going through, or had been through trauma, might find something in the pages they could relate to. I also thought the book could be helpful to someone who has a loved one with PTSD, to help them understand why that person acts or thinks the way they do, or to simply hear what it feels like to be a victim of trauma.

I wanted to stress resilience, the ability to survive and eventually thrive. I had reached the summits of many mountains on my journey towards living. I’m optimistic about having a beautiful life. I do have a beautiful life! I’m still very much in the middle of my healing process, it’s never linear, but there is always growth.

Untangled has been published for almost three months now. It has been an amazing and gratifying experience to have spoken at conferences, be interviewed for podcasts, and hear the feedback from those that have read Untangled. I feel like I’m not alone in what happened to me, and I have found that some others don’t feel so alone now either. I also learned, that we, as a human species all have the same feelings. You do not have to go through horrific trauma to feel intense sadness, grief, fear, anxiety, not-good-enough, shame or failure. By the time we are adults, we do not go through life unscathed and everyone’s “trauma” counts as their own valued experience. It’s getting to the place where we have the courage to go to the uncomfortable places where we decide it’s time to look deep and be vulnerable and live or stay in survival. Either choice is okay…it’s simply a choice.

I trust my journey of growth and change is never-ending. I begin each and every day ready and willing to claim my life, my truth, and my health, and to stand tall with blinders off and my eyes wide open. The story of my life is my truth, and no one has the power to take that truth away from me ever again.

 

Pausing for Thanks and Self Compassion

 

 

 

 

Holidays can be a difficult time for many people. Not everyone is surrounded by the large wonderful families that are  superimposed on us in the media. In fact, I don’t really know anyone in my adult life who looks forward to the craziness of the holiday season and having to be in four places at once regardless of their childhoods. For those of us who are healing from trauma, they can be especially trying because of triggers, memories, anniversaries, or just the stress of feeling like we have to be with those who may have hurt us.  I like to try and show compassion to myself during this time of year. So I took a moment and thought about what I am pausing to give thanks for at the beginning of the holiday season.

 

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What it feels like to have PTSD

People often ask what does it feel like to have post-traumatic stress disorder. I imagine it feels different for everyone, but I was able to capture what it feels like to suffer from this most frustrating condition. I often wear a mask on the outside, but on the inside I used the following poem to describe how it often felt. From my book Untangled, A story of resilience, courage and triumph

My PTSD
It doesn’t matter if it is cold, hot, sunny, snowing or raining. There is no telling when it is going to strike.
Are they alive or dead? Is that pain real or echoes from pain long ago that Resurface with a memory?                                                                                       It’s like being held hostage by your mind Thinking today would be the day I am free.
I look like everyone else. I know the difference between right and wrong.                                                                                                                                               Yet in my head I often can’t remember The last ten minutes of my life, or what day, year or time it is.
Are those smells real or is that a smell from a place and time when I was being held against my will?                                                                                         Am I really hearing the sounds of helicopters, planes Cicadas and birds? Or is that the sound coming from a place that no longer exists and should never be talked about?
I want so much to be like everyone else. So I will keep pulling myself up the rope, Out of the clutches of PTSD and all the skeleton hand of the past that keep trying to pull me down. I am like everyone else only my job is to live, so I CAN live. That is all I can ask of myself if I am going to have a future.

 

http://www.amazon.com/Untangled-story-resilience-courage-triumph/dp/1514213222/