“How do you start dying all the while trying to make sure that it is the living who will be okay?” This is a quote from Shane Koyczan from a poem he read at a Canuck Place Gala. I encourage you to watch the video. It is just 7 minutes long, but reveals volumes of truth. I wonder if Shane has some personal experience or did a lot of research into the topic?
Anyway, I thought about this sentence for a long time. I am not an expert on palliative care, but I do have my personal experience. Two of my closest family members died in a hospice: my father and my son. I have walked with them in the darkest hours and been with them in their final moments. Once you have spent time with someone dying and witnessed the fight for survival and what losing it looks like, it changes you. It is one of these life changing events that one cannot understand without having experienced it personally. Do you remember when your parents told you that someday you would understand. Did they ever do that, implying that you can only understand when you have grown up or made some experiences? Like most children or teenagers you might have thought it is some stupid adult statement at that time. At least I did. But now here I am saying exactly that to other people, although not necessarily teenagers. One does not know and cannot imagine the emotions that happen in such moments until one has experienced it. And once one makes this experience, one will indeed realize that imagination has not come close to reality.
So, why did I keep coming back to this quote in my thoughts. It is not directly related to baby or infant loss. Babies will not be able to give their parents the feeling of trying to protect them during a grave illness. However, from what I heard from other families who lost young children they do it from a very young age on. Maybe it is part of human nature. I think what drew me in though is that the pattern repeats itself in other ways. A dying person will worry about the people who are left behind. They might not be able to share their true emotions, their fears and feelings due to the love for their loved ones. Loving someone means protecting them from harm, both in physical ways as well as emotional hardship. Once you start thinking about it, this is actually a very weird scenario. What I am noticing is that we and other bereaved parents continue in the same pattern. When we get asked how we are doing, we evade the question or we might outright lie or we sugarcoat things. My wife and I often said to each other that we cannot say this or that because it would be inappropriate or too difficult for others to handle. Are we in a sense protecting others as well? But why would we do that? I can see it when you have a connection to another person, but even with random people? Are we in fact protecting them or us? These moments often turn awkward very quickly and maybe it is easier to avoid it all together. Or we don’t want to just see pity in their eyes. I don’t know.
A mom recently posted a video about child loss on her Facebook timeline and at the same time apologized for being a reminder of what can go wrong. I often feel the same way, like a reminder to others that their joy and luck might not last, and I can understand why she wrote it. But isn’t this the same concept of the dying protecting the living on a different level. Why would the ones who have suffered apologize for having suffered? Why would the ones dying feel bad for dying?
When I read your blog post I thought of two people: my friend Gladys, who dealt very well with knowing she was going to die, but found other people’s reactions very distressing. She said the effort not to upset people was harder than the dying. And David, a 14 year old boy with muscular dystrophy who I knew for about four years in therapeutic riding, who knew he was going to die and wrote his own funeral eulogy. In it he mentioned how hard it was trying to make sure other people were okay. Pretty much what Shane Koyczan said. I heard his poem – he’s pretty amazing.
Hi
First I want to say that even though we’ve never met I am so sorry for your lost. I also lost two unborn children, one ,a complete healthy girl due to incompatant cervix at six month of pragnancy the other due to his heart failure at 32 weeks of pragnancy. I know how hard it is an I agree about protecting others. I found myself so many time comforting others about my loss, trying protect them from hurting. It’s so hard! Fortunately I didn’t lose hope and today I am a proud mother of four amazing kids. There is hope for everyone and I wish you and all other parents who are or were in our situation lots of health, happiness and good energies and fast healing.
Rutie
Hi,
I was interested to read your thought provoking blogs. You’ve posted some good information here. I know when I look back on Coley’s last few months I realize that she was trying to protect us by not talking about dying and I wish we had more frank discussions about what it means to die. I wish that I had been more educated as to what death means to us as human beings. I just did not think about it very deeply before my daughter got sick and was at a loss as what to say when she became so terribly ill. We really do neglect to educate ourselves on spiritual and philosophical matters. Death is almost a dirty word not said in polite company!
Lanette