After losing Maxie, I suffered from BAD Post Traumatic Stress Disorder for a long time.  My brain kept looping the worst images of our experience.  It felt like there was a constant ringing in my ears, a scream in my heart, and like my brain was bleeding.  I always describe it the same way: like my soul was trying to escape from my body.  I could not hold it in - there was no calmness to be had.  I could not calmly sit and have a conversation with anyone about stuff.  I wanted to tear my hair our and rip my eyeballs out their sockets and while people talked to me about the weather and what was happening at work, I wanted to yell in their faces, "MY CHILD DIED YOU COMPLETE A**H#LE!""

PTSD is real.  It is as real as having a physical injury.  It makes you angry and anti-social.  It blurs your experience of reality.  You feel unsafe ALL of the time.  You cannot concentrate on anything longer than the very second you are breathing in.  It causes nightmares (for me - every single night - so badly that I dreaded going to sleep) and panic attacks.  It is almost impossible to work, or drive, or do much of anything.  It is almost laughable when I think of the things people asked me to do after I lost Maxie - like to go to a five day work conference out of town, where I surely would have been hospitalized or worse.  But, I realize now that people thought that what I was experiencing was just grief, something they might have experienced themselves after losing a grandparent or even a parent or pet.  Something heavy and deeply sad that stays with you for life.  They hadn't experienced what I was experiencing.

There is a difference between PTSD and grief.  The combination of the two is completely debilitating.  Almost every parent I have spoken to who has lost a child has suffered from PTSD.  Eventually, the PTSD wears off (mostly), and we are left with the grief - a profound and horrific sadness but somehow more manageable than the PTSD/grief combination.  I think that this is the piece of the equation that, had I known early on, would have given me a little hope that I was going to regain my sanity.  Also, PTSD is something that you can takes steps towards managing.  The grief of losing Max will be with me for life, but the PTSD does not have to be.  For me, that is really encouraging - I wish I had understood that when I was suffering from both things, but I couldn't separate the two.  It was all jumbled together for me.

People would tell me that the grief would be with me for life and all I could think was that there was NO WAY I could continue to live like that.  To live the way I was living was unsustainable.  It was relentless.  The pain was nonstop.  There was no room for air.  I really believe that a lot of that was the PTSD.  Certainly, there is a certain amount of it that is the normal stages of grieving - the shock, the despair, the depression, the bargaining - I cannot discount that losing Max is still completely unfathomable to me - I still find myself crying hysterically and obsessing over the fact that my baby is gone to me forever and the MISSING IS JUST TOO MUCH.....but my flashbacks and nightmares would completely take over my brain and I just couldn't even get out of bed most days.

What I mostly feel now is a deep deep sense of loss and sorrow.  I miss his sweet face and chubby thighs.  I miss his perfect eyelashes and dimple.  I miss the way he looked at me and the connection we had, which was more intense than anything I'd ever known.  I miss dreaming about all that he'd become and the excitement I felt about being his parent and the opportunity we had to be part of making his life wonderful.

I rarely have flashbacks anymore....maybe a couple of times a month.  I only have nightmares once in a while.  There are a handful of people who I am still angry at because even with all of this distance, I can still see that they acted like sh*th*ads, but I am not an angry person anymore.  I don't feel like screaming at everyone who just wants to make small talk with me.  I even enjoy being social with people I feel comfortable with now.  I rarely have panic attacks anymore.  What happened to me at my cousin's Bar Mitzvah was not a panic attack, it was a wave a grief....that still happens a lot, as I expect it will continue to happen throughout my life.  Many of life's really lovely moments will feel bittersweet to me but I can handle waves of grief much better than panic attacks.  A wave of grief is heavy emotion, and I can excuse myself to go outside and cry.  A panic attack is a physical response that causes you to lose control of your own body and that is really scary.

If you are suffering from PTSD (or are having any kind of trauma or anxiety issues), there are things that you can do to help yourself.  These are some things that worked for me.  Hypnotherapy.  Find a GOOD practitioner (would this be a good place to plug my Auntie Alison, who has actually experienced PTSD herself?  She lives in Portland, OR) and I promise it will make you feel better.  You can also download guided meditations and listen to help you relax or fall asleep.  I fell asleep to guided meditations for months.  The ones I found MOST helpful were the brain sync meditations that put you in a Theta state.  It will feel really goofy when you first start to listen to them but get over it.  I like Kelly Howell for healing and recovery (google her) - listen with earphones.  You can also practice meditation.  I have a lot of trouble with meditation but when I do it, it helps me.  I have an easier time with chanting meditation than the kind where you "quiet the mind".  My mind doesn't quiet - it spins and spins and spins.  Chanting, or repeating a mantra, gives your brain something to do.  You can even make up your own mantra like "I am quieting my mind while healing my heart" or whatever.  If the idea of meditation is repugnant - reading, cooking, cleaning, exercising (especially swimming, walking, yoga and running) are all meditative exercises.  They help you tune out and tune in.  EMDR is supposed to be a very effective treatment for PTSD.  I did it as part of my attempt to contact Max in Washington.  While I was very disappointed by that experience, I do believe that the EMDR part was helpful as I haven't had any severe flashbacks since then.

I know there are many other modalities that have helped PTSD sufferers.  If you have benefitted from or have any suggestions, I would love for you to leave them in my comments section so that they might be able to help someone else.  PTSD is hell.  If you are going through it, for whatever reason, I can relate and I am so so sorry.  I hope that you will find ways to deal with it because I know how terrible it really is.  My suggestion - don't let anyone make you feel bad that you can't just get up and get on with it.  They have no idea.  Take all of the time you need.  You know what you can and cannot handle.  You will get there eventually.


Jayden's Mommy said...

Yeah. PTSD is as real as any other injury. I think it would be helpful to make it known to those that are close to you. The way they can be more understanding. I will not advice baking; I gained 24 lbs in one month because of it. Cooking ( new recipes ) , cleaning, any kind of exercise will at least get you to get out of bed. Reading. Praying and meditating were really helpful. I want to get to where you are Abby. I'm still very angry. However you gave me the best advice "be gentle to yourself". I had such an expectation of myself. Also, it's already hard to deal with your PTSD but to see your dear husband go through it and not been able to remove their pain its just devastating.

Anonymous said...

Abby, thank you for this post. I am so grateful. For anyone reading, my PTSD is not related to losing a child, and I cannot fathom your loss and pain and profound grief on top of PTSD. As Abby knows, I'm still in the early stages of PTSD following a violent home invasion, and hearing Abby's experience that the PTSD eventually fades is very encouraging. A PTSD diagnosis, conversely, is very discouraging and debilitating. I've also used guided meditations for help with sleep, and am currently doing EMDR, which is almost more intense than I can handle some days, but I do feel it is helping. I agree with Jayden's Mommy that letting friends know is key, but also don't be surprised if friends and relatives don't "get" it. It doesn't matter. Do what is right for you. Most of all, in the early stages—at least for what I'm experiencing—I've been told not to discuss the details of the event with anyone other than my therapist and husband. At least for now anyway. Each time I discuss it, it's a re-traumatization and until I get through a few more weeks of EMDR (which is an intense processing of the events), reliving the events with well-meaning neighbors and friends is not helpful for breaking out of the trauma cycle. Maybe that's specific to my ordeal. Anyway, I know everyone processes trauma differently and my situation is a drop in the bucket compared to the devastating loss of a child. I love Abby for sharing her experience and showing that there is an end in sight to PTSD. Thank you, Abby.

Maxie's Mommy said...

I wish someone had advised me against telling and retelling the story. Then everyone puts in their two cents and wants to tell you their theories of what they think happened to your kid. It is always a retraumatization every time I have to talk about it. And everyone feels entitled too. I think they think that they are helping me by talking about the incident. I don't want to talk about the incident. I want to talk about Max... And the big gaping hole in my heart!

Pinkyblu said...

I'm so glad you mentioned EMDR, I had this done when I lost my baby (different circumstances entirely) and after the first session, my flashbacks lessened greatly. Now I don't have anywhere NEAR the pain I had when seeing that image.

I 'enjoyed' if that's what you can call it? reading this post because it really connected with me. I hate that anybody has felt such intense sadness, your sadness to me is still unimaginable as my baby died before birth at 6 months, I cannot imagine your grief. I really can't.