The playground gave me a few things which were life-changing. My classes gave me more.
I was a social work major by then, sitting in lectures that were not about me and recognizing myself in them anyway. Three times that year a concept came up, and I understood somewhere around the second sentence that it was describing my own life — and that it had been describing my own life for seventeen years while I had no word for it at all.
Grief with no funeral
I did not expect grief to apply to me. Nobody had died.
But I had lost a brother — the one I imagined before he came home, and never met. The one I had hoped for years he would become if I just tried hard enough. We were not going to play the way other siblings play. We were not going to move through a life side by side: school, leaving home, marrying, raising children, growing old as two people who had started out together. I had been carrying this sadness since not long after he was born.
When there is a death, the grief has a rough trajectory it usually takes, learning to live with the loss a little more year by year. Ambiguous grief does not. It arrives new again at every stage of life I reach and he does not, and it is not finished. It is not going to be finished. This is a type of grief often recognized in parents of a child with high needs, but typically not given much thought in their siblings.
It should have been me
Survivor’s guilt arrived in my vocabulary during a class. This type of guilt happens in many situations, such as an accident where some died or were hurt much worse than others.
The thought running through my mind since early childhood was, It should have been me. I was not a perfect person. I deserved his fate. Why did I get the working body? Why am I the one who grew up and left home and married and raised children? Why was I able to have a career? Why am I the one who is okay? And I was acutely aware of something that never stopped seeming unfair. My own birth was the dangerous one. It was so difficult that the doctor was afraid my mother and I would both die. Rick’s delivery went more smoothly than mine — and he was the one who came out with damage.
Since survivor’s guilt is often reopened at every stage, it never entirely resolves. But having a name for it is helpful. You cannot examine what you have no word for. With therapy and time, it is not as strong.
Enmeshment, but how does that fit?
The third concept I discovered was enmeshment. It was presented the way it usually is: as a marker of a dysfunctional family. Usually that family is one where one or more members are making bad choices — drinking too much, say — which affect the others negatively and cause the whole family to adopt unhealthy ways of coping in order to survive.
Ours was not exactly the dysfunction the book was teaching. Yet I recognized my household, and had to work out for myself what the textbook did not say.
The clearest look I ever got at how enmeshment affected me came when my family moved across the country and I stayed behind for school.
They were a long way off and there was nothing for me to do. His appointments, his crises, whatever went wrong — all of it was going to be handled by two people without me. That should have been a relief. I was twenty years old and free.
What I felt instead was that I could not put the responsibility down. Not missing them, not worrying in the ordinary way a person worries about family far away. A job I had held since I was three was still running inside me, and now there was no way to do it and no easy way to set it down either.
You cannot see a system like that while you are in it, doing your part. You find out how fused you were when you are taken out of it — torn out of it, more like.
He names and He heals
He heals the brokenhearted and binds up their wounds. He determines the number of the stars and calls them each by name. (Psalm 147:3-4)
Healing in one breath, naming in the next. Naming is part of the binding up.
Nothing in my life changed on the days I learned those three concepts. My brother was still disabled, the grief still arrived at every milestone, and I still could not fix any of it. What changed is that I could look at what I was carrying, because it finally had a definition.
If you have carried something for years with no words for it, it very likely has words. Somebody has likely studied it, written about it and given it a name. You are not the first, and you are not strange. Go and find out what it is called.
Lord, You name the stars and You bind up the brokenhearted, and we have only just worked out that those are the same mercy. Give us words for what we carry, and someone to say them to. Amen.
Next time: what I would tell parents now.
Click HERE for the first article in this series.
