Hello world

Hello world…

Today I went to the grocery store. I went to the grocery store by myself. I went to the grocery store by myself, got everything on my list and did not have a panic attack. On the way home with a trunk full of groceries I cried. Not the hysterical sobbing, aching cry but I sort of relieved cry. I felt the bindings loosen a little today, maybe a small piece of the ten thousand ton weight fell from my heart, a shard of shrapnel was removed.

I’m writing this because it’s happening now and someone needs to know or someone will. When I read books about grief the words are rounded and smoothed by healing, years of healing. I’m in it now, right now. Nothing is smoothed, nothing is rounded, everything is jagged.

I have Post Traumatic Stress Disorder. My trauma was the death of my amazing son. A dear friend, someone I respect a treasure said to me recently “People need to know about this!” I had no idea PTSD could be induced by the death of a child and for a long time I had no idea my symptoms were not “just grief.”

My (very simplified) understanding of PTSD goes something like this. My mind absolutely could not process Damon’s death so it completely shut down when it started to wake up again it partitioned the trauma into its own space in my head. Because my brain has partitioned itself nothing works correctly and everything is misfiring…

So, here is what PTSD is like for me.

I can’t remember Damon’s death without being there, without reliving it. It’s like being shoved into a pensieve and not being about to get out, not even knowing you could get out, not knowing what you are in is a memory. It’s happening again, except this time I know how it ends. This, I am told, is a key characteristic of PTSD.

I cannot function in the “normal” world. Unexpected changes in my day produce panic attacks. Crowds produce panic attacks and early on not knowing where Will was (if he went around a corner or went out of my sight) would produce panic attacks. Loud noises, multiple people talking to me at once, virtually anything that causes stress or confusion brings on a panic attack. What is a panic attack? For me it feels like the world is going dark, everything closes off, my heart rate sky rockets, my breathing becomes rapid, I sweat buckets, I can’t see well and I definitely can’t think.

Nightmares & flash backs– relatively self explanatory and I’m not up for going into it.

My precious friend wanted to know how she can help someone she loves who she thinks may be experiencing PTSD. My first response was “you can’t.” That’s partially true, there’s very little anyone can do outside of a competent therapist but then I amended. How can you help? Get over the idea that this is something a person with this disorder can want their way out of. I cannot control my panic attacks. I cannot control my flashbacks. I cannot stop the nightmares. I cannot force myself to do anything and the harder I try the worse it gets. Everyone is different but the thing I need most from the person I love the dearest is understanding. Understanding, space and time to do the grief work as I’m ready. I need my beloved to understand that I don’t want to be like this. My brain is screwed up. It will take a lot of time and a lot of work to heal the shattered parts. 

  

I don’t know when I’ll write again. I’m feeling very withdrawn. I very much want to be alone, to be isolated. Maybe because I’m slowly slowly exposing my wounds but my friend’s words struck a chord with me and I wanted you to know. I wanted you to know a little of what it’s like. I want you to know how to help if you’re the helper and I want you to get help if you’re the shattered. Until next time…

I miss you! I miss you! I miss you!

I smiled today and I cried, both rarities in my life these days. The smile far rarer than the tears. I am told this is a symptom of PTSD, dissociation. My mind can’t cope so it just shuts parts of itself down. It shuts parts of me down. Most of the time all I feel is the harpoon jammed through my still beating heart. I try desperately not to turn, not to move, cough or breathe too deeply… not to shift the position of the impaled barb and send agony shooting through me. Today I stood in Damon’s doorway and said “I miss you. I miss you. I miss you.” The barb shifted and the tears came. I can’t cope…  How on earth could anyone cope?

Baby boy, I miss you! I miss you! I miss you!

In what reality is this my world?

Whateth the crapeth?

I’ve been eyeballs deep in the Old Testament. It’s seriously unsteady ground. Nothing about it fits into neat little packages and the “anemic” descriptions of “characters” that I grew up with are embarrassing and downright untruthful.

David, for example, is a selfish womanizing murderer and not just in that “unfortunate episode” with Bathsheeba. An honest reading reveals there were no heroes of the Hebrew bible… none. Every single person was warped, twisted and downright human. Interesting.

The psalms are 40% laments, Jeremiah rants nearly incoherently at God for an entire chapter (and often in snippets elsewhere}, Ezekiel isn’t so thrilled with YHWH himself, the book of Job seems to slyly take shots at typical ‘easy’ answers and tidy theological explanations and then there’s the book of Lamentations. Each ancient voice saying “whateth the crapeth?” (that was a joke…)

It seems to me the ancients regularly questioned, ranted, screamed and left the edges of their stories raw with inexplaination. As much as the Hebrew bible makes me want to scream in frustration, as much as YHWH sometimes seems schizophrenic I prefer this true to life version of faith. I’ve started to understand that what lies across my lap when I read the bible is the record of a community literally wrestling with God and most often totally not getting it. There is nothing static here, there is honesty among manipulation, there is fear, pain, drop kicking of faith and seeking it out.. Life is messy… there is no cleaning it up.  

“He is not a tame lion," said Tirian. "How should we know what he would do?...” – The Last Battle, C.S. Lewis

Mine

I discovered something. I discovered that I know what I’m doing. Not always and not even in a definable way but I know what I’m doing. I want to scream it. Let me do this… let me do this my way. Only I know my wounds. Only I know my pain. Only I can guide the healing process.

I put my foot down. I said “no, I’m not doing this,” to my therapist no less. The next day the skies opened, I could breathe. I was disoriented… lost, spinning with the oxygen that entered my lungs. I didn’t think much, except about Damon. I didn’t try to figure out where the sudden space had come from. I let myself brush against some of his memories. They didn’t sear through my soul. They hurt… immeasurably more than I can describe but I could endure it, for short spurts.

Today is different. I hurt more but air still comes when I drag it into my lungs. I see the world today. I look around blinking, seeing beauty. It’s shocking. I revel in the crispness, the normal everyday sounds that fill the air. It feels good to see. My mind started to pull itself out of the shock of colors, sounds and smells and it occurred to me that this space, this light came with me stopping the world spinning and saying “no” and meaning it, with me trusting myself enough to determine that something wasn’t working and set my sights on reshaping it so that it would. I took back some semblance of control and realized that I know what I’m doing.

I think this is universal. I think each of us know what we’re doing. I’ve long loathed the word “should.” It raises my ire like few utterances can. No one should. I HATE should. I think deep down you know what your soul needs. You know what will heal, help or propel you but we drown ourselves in ‘shoulds’ and it seems we are so very unwilling to give each other space to stumble through the dark. We often insist on shining an uninvited searchlight into the eyes of one who will only be blinded by the intrusion.

I’ve said this before but now I see it. I see it so clearly. Only I can determine when or if I’m ready. To be pushed, or to push myself into doing something, experiencing something or confronting something when my heart isn’t ready is damaging and perhaps deadly. Damon is mine. My grief is mine. My PTSD is mine. My memories are mine. I’ll go there when I’m ready, on my own terms.

It feels good to trust myself again, if only a little bit. I’m just going to keep breathing for as long as the air comes and we’ll go from there.

PTSD

Do I publish this? Isn’t the crazy that happens in your therapists office supposed to stay private? I don’t know but I’ve come this far. I don’t want anyone to ever feel as alone or insane as I do so here’s the latest chapter in my journey in grief.

I have PTSD. I sat here and stared at that sentence, like maybe seeing it in writing would make it make sense. Post Traumatic Stress Disorder… I have a disorder. In part this new knowledge is a bit of a relief, an explanation for why I couldn’t seem to track with anyone or anything else, for my virtual dysfunction, hysteria, memory gaps, panic attacks, jumping at every sound, massive emotional swings from numb, inaccessible and distant to crippled by pounding tsunamis of pain and memory, for the uncontrollable flashbacks and the persistent nightmares. “I thought this was just grief” I told my therapist “No, this is grief buried under PTSD.”  She said “the first thing you need to know is you are not going crazy.” She said these words trying to hold my gaze, trying to make me believe them. “Do you feel like you’re going crazy?” “YES!!!”

I grappled with this new knowledge, trying to make it settle in my befuddled head. It still hasn’t. What does this mean? I have post traumatic stress disorder… does that mean I don’t have to live like this for the rest of my life? It can… but treatment for PTSD is exposure therapy. My stomach turns just seeing the words. It means I have to walk back through those two and a half days, step by brutal step. I have to look at them. I have to expose myself to them. Oh God.

We tried this week, after less than ten minutes I was curled in the fetal position on her couch sobbing so hard I couldn’t breathe, head pressed so hard against my knees my forehead hurt. My man was there with me. I can’t even imagine what it was like for him, walking through a nightmare that actually happened and seeing me reduced to a virtual animal.   

I’ve read a lot written by bereaved parents. I often feel that they are the only people with whom I can connect but even here I felt a disconnect. They talk about it. They talk about their child’s death. They talk about the day, the hours, the hospital room, the clothes their little one was wearing. I had wondered why I stood outside this experience, why I could not do this. Now I know.

Do I have the strength to do this? I honestly don’t think I do. We’ve been told I’ll likely get worse before I get better. That almost makes me laugh, worse? I suppose I could reenter the near catatonic state of the months immediately following Damon’s death but I’m not even sure that would be worse. 

Still, I’m terrified… 

Truth?

Some time ago I read a blog post written by a woman who was present at a tragic event where several people were brutally murdered. Her post spread rapidly among Christian communities and was posted on the websites of Christian radio stations. From my perspective the gist of her post was “why would this make me question God’s goodness?” She vehemently defended her faith and asserted that evil was responsible for what happened, not God. Again, very recently I read a post by a bereaved mom. Her position was much the same. She said she is not angry with God for the death of her child, why would she be?

First, I need to make it clear that I thoroughly respect the feelings, thoughts and opinions of these women (and anyone else for that matter). Quite frankly I think a place of peace with one’s circumstances is a beautiful place to be. I’m envious but given that this is the stance held up by the Christian community and lauded as great faith I feel the need to speak for those of us who just aren’t there.

I’m not going to get into a dissertation about how evil can operate in a world where God is omnipotent and omnipresent but I will say that to point to evil as the cause for death and destruction is an incomplete assessment. Is God in control or is He not? Enough said on that point…

Here I’m going to come out of the closet so to speak. I do question God’s goodness. I question His goodness daily, hourly, constantly. So do many many of the grieving parents with whom I converse but they are too afraid to say it. I am FURIOUS with God. Many of the tame thoughts I think toward Him and rants I scream at Him would likely have had me burned at the stake only a few hundred years ago. In our current Christian culture many of us feel like we aren’t allowed to question or doubt. Such thoughts place us outside of the circle of faith so to speak and invite unwanted lectures, sermons and ostracism. In the desperately fragile state of a bereaved parent we cannot afford such painful confrontations and we urgently need the support of our faith communities so silent we remain.

I question… I question everything. Do we really believe God is the almighty God of the universe? If so then why the urge to defend Him?  I suppose I’m banking everything on the belief that He will come through, that He can stand up to my questions, my doubt and my fury. If not, He’s not God. For now our relationship is beyond bad. As I told a friend recently “God has the obnoxious habit of refusing to fight with me.”  I don’t know where this will go but do I not deserve the room to seek the truth?

Please please, if you are one of the few trusted members of the support group of a bereaved parent who believes in God trust Him to do His thing and let them do theirs. Just love, listen, hug and don’t judge.    

focus

I’ve spent the last few weeks/months (?) caught in endless pounding waves of fury and hatred. There was little else I could feel… blinding pain – searing hate – blinding pain – searing hate. A few days (hours ?) ago the blinding pain screamed in my soul and I reached for the hate. It wasn't there. Until that moment and several very much like it I wasn’t aware that the hate had become a vicious, multiheaded, fire breathing guard dog. It protected me, in some small way, from the memories, from the pain. Now the raging fire has abated. The anger is still there, bigger and brighter than at any other time in my life but it is so much reduced from what it was. Again, I am left reeling… grappling with a flood of emotions, yet another new reality. Bone acing pain and nearly physically debilitating depression. Somewhere in my logical mind I recognize that my coping mechanisms are slowly being removed, layer by layer. I am being forced to look at the horror that is my life, that is my past, that is my future more and more head on. I miss the rage. Odd, I know. To any rational, sane, nongrieving person that sounds at least borderline psychotic but I was used to it and, like I said, it held off reality.

Maybe the most sickening realization about this recent shift is that it is just one of many many many cycles of debilitating pain, denial, anger and depression through which I will and have cycled. I go through them daily, weekly, monthly each layer wrapped within the other. Then on some large scale yet another wave of huge emotion rolls on. Denial wrapped in depression wrapped in anger wrapped in depression. Cycle upon cycle. I’m so unbelievably exhausted. Some days there is no room for hope, most days I can’t even fathom the concept.

I’ve started to try (emphasis on try) to focus on what I can do. My life is a huge bundle of can’ts. I can’t hold my baby. I can’t hear his laugh. I can’t see his smile. I can’t change what happened. I can’t understand anything. I can’t make up my mind about what is real or what is true. Some days I can’t get out of bed. I can’t cook for my family… on and on and on. So, what can I do? Not much in all honesty but I’ve had to decide on what to focus my extremely limited energy and free emotion. What matters? My man matters, my marriage matters. Here I am willing to fight, sometimes the energy isn’t there but he will always is. I can focus on telling my husband how much he means to me. I can focus on trying desperately to perform some outward expression of that love once a day. I can try. Isaiah matters. This one is harder. He is harder. He’s six, after all! Parenting is exhausting when the world is sunshine and roses when it’s tsunamis and choking blackness… ugh. So, what can I do for Isaiah? I can focus. Once a day, pull myself from the fog and focus on my son. Sounds like a big DUH but it is so hard.

Focus on what matters Jodie, let everything else slide. The dishes in the sink, the laundry, the floor that needs to be swept… you don’t have the energy for everything anymore so focus on what matters, period.