Saturday, March 02, 2019

Beyond Me

I participated in a research project a few weeks ago. It was great to talk about grief in a controlled and supportive environment again. In the first few years I told his story, and my story, a lot, in all kinds of situations. Sometimes conferences and research type settings, but mostly in social situations. I hadn't done that in a long time until I had the chance to be interviewed a few weeks ago. It's made me think about the stories I told in the beginning, and how they're just out there being used for whatever purpose, or no purpose. I think mostly they've become idle gossip, or a weird thing someone once told them. A few years ago we were hiking and we bumped into someone I used to work with. She said that the last time she had seen me I was pregnant, and she was trying to figure out from amongst the children in our group which two were mine. When I told her Toren had died, she looked stunned of course. Afterwards I remember thinking that although this has been the biggest story of my life (so far) that affects me every single day, for her it's just something weird that happened on a hike once.

These pieces, I feel, don't really matter. I don't love it, but also it's not as important as other stories. For example this one: On the day he was born, our doctor was not actually present. The doctor who did deliver him called my doctor and he came a little later on. I will say that on the whole, he is a kind person with a big heart. He had been our doctor for 4 or 5 years by that time. It's not the same as knowing someone but I felt confident in his skills and comfortable with him personally. He was very caring when he came to visit but he did something which in hindsight I question. Actually, I fucking hate it. He told me that of course it was too soon to talk about it but we would probably have another baby, and he knew of a woman who had lost her first baby and a couple of years later when she gave birth to the subsequent baby she cried out "Is it dead? Is it dead?" This is how he told me the story. He threw up his hands when he said it and...rolled his eyes? I can't be sure but that's how I remember it so it doesn't matter how he actually told the story. Someone else's story. This story matters because doctors are key pieces in preventing stillbirth. That's the short answer. There's a longer one about trauma and empathy and self-care. I honestly believe he is deeply affected by stories of stillbirth and is not getting support for that. This means that you can tell a newly-bereaved and traumatized mother a story like that as if you are acting out a scene from a TV medical drama and it doesn't even occur to you that this might be inappropriate and even harmful. Is my baby being used this way? As an awkward and grotesque way to connect with bereaved patients because you feel completely helpless and don't know what to do for them or what to say to them? When you train and practice most of your life to bring life into the world but instead you bring death, what does that do to you if you can't even talk about it? I went to see him for my 6-week follow-up and I wish I hadn't. Medically, I didn't need to be there and he didn't know what to do with me. I probably thought I would get some answers, or maybe even just some kind of support because I was really struggling at that point. This was before I started going to a support group at another hospital. The appointment was a mess. It would have been comical if it hadn't been connected to tragedy. Maybe some sleazy producer can have that scene written into a hip Netflix show about how death is just a big hilarious joke.

If doctors, the people in positions of power and influence in the healthcare system, aren't acknowledging the enormous cost of stillbirth to everyone, how are things ever going to get better?

I'm so grateful that I was able to tell my story and my baby's story to a researcher last month. Whenever anyone reads it, it will be to build on a body of knowledge. It won't just be a weird story floating around out there. And then someday, things will get better.


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