Let’s All Make Some Room. Give Space to Grieve.

Modified from January 2019.

Many years ago, I was at an agency to give a training for self-advocates on oral hygiene. As I walked into the room, there was a woman sitting by herself at the edge of the table. Her eyes were looking downward. 

I greeted her, figuring she was early, and started about my business of setting up the training. As I was working, I was trying to engage with her.  “How are you?” was met with a mumbled response. “Is the room too cold?”…I got a shrug back. Finally, after I finished my work, I sat across from her and asked if she was alright. She said three words. “My parents died.”

I was a little taken aback.  I had worked for years as a nurse. My job was to prevent death. However, when the unavoidable happened, I didn’t spend very much time with families. The “grieving process” wasn’t my thing…that’s what social workers did.  I asked her if it had happened recently. Again, she just gave a shrug.

As I was sitting with her, a Direct Service Professional entered the room and overheard our conversation.  He explained that her parents had died 10 years ago but she frequently brings it up. Not having family either willing or able to care for her, she went to live in a group home. I got the sense that because her parents had died years ago, it was somewhat of an annoyance to talk about it so often. Frankly, I was just glad that it hadn’t happened recently because I didn’t have the skills to help her. 

I’ve thought a lot about this woman and the grief she sat alone with in that room. My Dad passed away a little over 2 years ago now. Until that moment I hadn’t experienced a loss of that magnitude. After he died, I realized that nothing would ever be the same again. Even now, years later, sometimes I struggle with that.

What did the woman in the room lose when her parents died and she moved? Family traditions? The cast of characters that made up her everyday life? The comfort and smells of home? I also wonder: how often do we ask self-advocates to move on from their grieving because we think it has been long enough or maybe it makes us uncomfortable? 

I think grief is something, as a system, we often forget about while remembering support plans, medications, and regulations. When I hosted a bible study for self-advocates, I spent time agonizing over preparing a lesson. I developed an outline and a theme.  Songs and Bible verses were chosen. Yet each week, the attendees would navigate the conversation to the topic of grief and loss.  

At first, I was overwhelmed with the change in my plan. Then I became accustomed to it.  Further, I learned they needed a place to talk and express how they felt.  It was less of a study of the Bible and more about how we deal with the traumas and changes that occur during our lives.  I did some comforting and explaining, but mostly the self-advocates shared with one another how they coped with grief. 

There were tissues, hand pats and hugs were given, tears and laughter were shared.  Additionally important was what wasn’t present. There weren’t any questions about how long ago their loss or trauma occurred.  Because, does it really matter?  They created their own support system; I provided the time, room, and snacks. 

I hope the woman alone in the room…found a room…a room of people like this. I understand now how brave she was for saying those three words. That was her attempt to create a community of people who heard her grief and could provide comfort…her own room.