http://www.youtube.com/watch?v=kimQ9ZGdCuE
Can you listen as you read?
As some of you guessed from my sudden halt in blogposts, our meeting with the NICU staff almost 2 weeks ago did not go well. We were treated fine, we were given all the information we could be given, and we asked all the questions we wanted to ask. However, much to our surprise there was new information presented in the meeting which lead to a different 'cause of death' outcome than we had previously thought. We thought we knew why Salome died (with a 16 week gap between her death and the autopsy discussion, how could we avoid developing our own story?) but we were wrong. The new story of why Salome died upsets me greatly, and I have not been doing so well emotionally since that meeting, in the sense of actually being in quite a shit state.
I understand that everyone wants to know what this new 'cause of death' thing is, but it is too painful for me to talk about it. I talked to a few people about it in the days after the NICU meeting, and now I've stopped because I find it too hard. Of course people are going to ask about it because I put it on the blog, and people are concerned about us and want to know we are doing OK . Just to clarify: I don't want anyone to feel bad about asking about the NICU meeting. I am very able to say I don't want to talk about it. I don't want people to feel like they take their life in their hands when they ask me how I am or what's been going on with me. It is just too too painful to talk about at the moment. I understand people want to know the 'what if' scenarios regarding Salome's birth, but the 'what ifs' already hound me at 3 am so I don't want to give them additional airspace.
I feel deeply deeply ashamed of how Salome died and it's an awful feeling. I have never felt ashamed before. I've had a standard allotment of guilt in my life (most of it well deserved), but that's different. Whereas my sadness-grief felt like a painful stretching open of my chest / heart, this shame-grief feels like my heart has turned to metal, and the weight of it is pulling my whole body down and piercing down through my chest. It's a very isolating feeling too. It's hard being around people when I feel like this, and I have trouble giving anyone eye contact or talking about myself at all. There is a pervasive feeling of being unworthy that's floating around like a stinky fog whatever space I walk into. Doing job applications when I feel like this is very hard. I know some people find my guilt and shame feelings uncomfortable to hear about so I don't talk about it much. I find pg 13 and 14 of this booklet reassuring:
http://www.sidsandkids.org/wp-content/uploads/AlwaysYourChild.pdf
This part of the grief feels like I am stranded in a freezing cold dessert at night alone with no protection or supplies. There is no comfort, no path to follow out, just darkness and cold and blankness. All the people saying "It's not your fault. It's not your fault" are like birds circling me in the dark 30 m above my head, squawking. There is a part of me that knows my feelings of guilt and shame are not logical, and that these feelings of shame will pass with time, so although it is awful I don't feel overwhelmed.
A theme to my shame has been a huge feeling of anger at my body. At first I just noticed those feelings and wondered if I should take any action to manage them, and while I busied myself with my non-judgemental stance, my comfort eating went through the roof. Empty packets of iced vo-vos and chocolate wrappers were blowing around our house like tumbleweeds in a western. Even before this, regulating my food intake in a healthy way has been tricky since Salome died. In my current muddle-headed state it is hard to distinguish feeling hungry from feeling empty. At times I have eaten not enough, at times I have eaten on automatic and thus eaten too much. Other times I have found myself eating lots of comfort foods in an effort to feel SOMETHING.... to feel ANYTHING... to cut through the numbness. Most of the time I need to consciously check in to what my body is feeling. Chats with other SIDS and Kids parents indicate that I am not alone in this difficulty. As said on 'theheirtoblair' blog below, the 7 stages of grief don't include a cupcake stage, but maybe they should.
http://theheirtoblair.com/2010/02/08/the-stages-of-grief-dont-include-a-cupcake-stage-neither-do-the-stages-of-weight-loss/
See also this writers comments on her dietary problems following her son's death:
http://mysteryoriley.com/2007/08/23/the-dead-kid-dietheres-one-you-dont-want-to-read/
As I whinged to the other parents at the last SIDS and Kids meeting "When am I going to start wasting away from my grief? I want to start wasting away rather than going in the other direction." My direction have been more waist-away than wasting away.
Clearly this anger at my body was changing my behaviour whether I wanted it to or not, so better to steer the change in some life-giving direction. The action I took was drastic: I joined a gym for the first time in my life. I am trying to pound out my anger on the treadmill and the boxing bags, rather than pounding myself internally, and I am trying to reconnect with my body as something worthy of respect rather than just a death trap for my daughter.
The problem is I fucking hate the gym. I hate it I hate it I hate it. I have always felt uncomfortable whenever I have strayed into a gym, which is why I have never joined a gym before now. In the gym subculture I am destined to always occupy the bottom rung of the pecking order. I suck at gross motor skills. I can hold my own on a dancefloor, but I can't catch a ball and the fact that I can't catch a ball doesn't bother me. Because my overall health has been good I have gotten along until now with going for regular walks. However, it is very dark at 6 am these days and it has often been raining, so off the gym I go.
When I joined up I asked for someone to show me how to use the equipment so I didn't hurt myself, and I was told that would cost extra. The first morning I went for a swim in the lap pool, I breached swimming lane etiquette and I got yelled at. I finished my swim then went home and cried. 2 days later I fronted up on a Saturday morning and introduced myself to the treadmills. A staff member showed me how to use it after I asked him, but he seemed uncomfortable about being seen talking to me, as if he didn't want to get busted providing customer service. I fell off the back of the treadmill once, but I lived to the tell the tale and I didn't cry. 2 days later I did a Zumba class. It was fun, but it hurt my dodgy knees and I won't do it again. I then paid for a trainer to show me how to use the machines and give me some ideas, and that was worth it. I aim to go every second day for one month, and then never set foot in that godforsaken place again.
Matt said I should "Think of the gym as a big playground, because that's all it is". I was speechless. Him top of the pecking order in gyms. Him gold star ex-competitive power lifter. Him good at any sport he tries. You sporty people, you have no idea what's it's like for the rest of us! (queue sad violin music). Never mind, I kick his arse at karaoke and that's what matters.
The gym I have joined is the official hang out of the Newcastle Knights. God help me. The Knights are everywhere. On Thursdays they strut around looking wired, and on Mondays they skulk around looking forlorn and hungover, strapped up like salamis, some big, some not-so-big but still massive up close. Some of them weigh about 5000 kg. One of them looks like he weighs only about 90 kg and he walks on the balls of his feet like he could shoot off on a 100 m sprint whenever he wants. Unnerving, but very Newcastle to see them wandering around while I am doing my warm-up stretches.
In other news:
- I am doing a job application a week and getting all sorts of interesting knock-backs.
- I have had a session with spiritual director June and I'll be seeing her again in a few weeks. At her suggestion I am rereading 'When Bad Things Happen to Good People" by Rabbi Harold S Kushner. To state the obvious, it is a really good book.
- It was our 8 year wedding anniversary yesterday. I'm trying to regard this year as the equivalent of a survivor show for our marriage.
- X finished the book about Salome she wrote and illustrated with the help of Sr Jennie the school chaplain. It's beautiful and she's very proud of it.
- K has had croup so hasn't slept well for a week now.
- Here's something that made me laugh (inappropriate content including swearing DON'T OPEN IT AT WORK)
I need to find a job and apply for it within 2 hours. No problems : (
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