L’Arche grieves beautifully. Even writing that last sentence feels strange to me, though. How is grief beautiful? It seems like such a strange irony. Yet, I have never seen any community come together around a loss as lovingly as this community has – enveloping each other.
One line that gets repeated over and over at Daybreak is that “we are a community of storytellers”. We take every opportunity we have to share stories with one another and we never pass up on an opportunity to keep this tradition going.
When we first received the phone call that Peggy, one of our longest standing core members had passed away, we immediately were in shock. I went through all of the stages of grief, which was very profound for me because I only knew Peggy for 2 months and Peggy and I had really only lived at the same house for 1 month. I knew the sick Peggy – not the strong, vibrant one who had brought such happiness to the house. I have been through loss before, however, I have never experienced all of the stages of grief. Yet after Peggy’s death I almost felt it to be overwhelming to walk alongside the other core members (residents) as they struggled while I, myself, was still grieving.
One thing that really helped in this process was talking to long-time members of the L’Arche community. They shared with me that people with developmental disabilities often exemplify the stages of grief in a much more profound way than the rest of us do. For the most part, anger becomes sheer rage, sadness can easily lead into depression, and denial can become almost like distancing one’s self from the world. So I was told early on that I needed to not be shocked by any extreme displays of emotion that I might witness – knowing this really helped.
In the very beginning I also really struggled with showing core members my own emotions. To be honest, before L’Arche I was not very in tune with my own emotions. I was a very logical thinker who thought emotions were sometimes embarrassing. Yet, God really surprised me with the strength in this time to move forward with the core members.
Soon I found the core members coming to me to discuss what was happening with them as they grieved. It really bonded us together and I believe this was really the beginning of my friendships with the majority of people in my house. At the same time I physically was worn out because of the long nights at the hospital and emotionally I was drained. I was still so new to my job, and learning so much, and to have this loss on top of it seemed like too much to bear. I felt like I had to be really strong for the core members and not show them I was struggling because I was there to be a leader and an assistant to them.
Yet, the most helpful thing L’Arche provided me with was the opportunity to grieve myself. One long term member of the community shared with me, “when you act strong you are actually doing the core members a disservice. When they see you grieving, it also gives them permission to grieve. It’s okay. Pick a core member and have a good cry with them.” Hearing someone say this to me really helped me to understand that any emotions I was feeling were normal and that I didn’t need to put on a façade but could truly be myself at L’Arche.
As the days progressed, L’Arche became a very busy place. We had several gatherings where we shared stories of Peggy’s life. A beautiful coffin was handcrafted by our woodery, and the funeral procession consisted of all the members of our house. Yet the funeral itself was not where it ended. As the months progressed our core members continued to pray for Peggy’s family every night, they continued to remember her and they still do.
Peggy will always be a part of our house. Just a few weeks ago some of us who knew Peggy gathered over a lovely dessert spread as we shared stories about her life just for closure. We also had a blessing of her room and have made plans for converting it into a room that will preserve her memory and to use it in ways that will remain respectful to her.
I never thought I would learn so much about grief at L’Arche, and yet, I am grateful that the core members trusted me enough to walk alongside them in the time of their deepest pain and rawest emotions. In the end, although we had to say goodbye to a dear friend, we also were able to truly celebrate her life and say hello to her in a new way.
How to Help People with Developmental Disabilities Grieve
By no means am I an expert in this field. I do not have much training and I can only speak based off of what I, myself, have learned living at Daybreak.
- Validate the person’s feelings. People with disabilities often can feel many different emotions and they may also have very quick shifts in mood. It’s important to not only validate what they are feeling but to remain gentle and non-judgmental. It’s also important to see every day as a new day – not holding tightly to how the person may have reacted the day before.
- It’s okay to be real about your own emotions and to grieve with the person.
- Respect the person’s need for privacy and space.
- Don’t let anything surprise you during this time about how a person may choose to react (you may see much anger or even aggression. Don’t take it personally).
- Although you must be gentle and thoughtful in this time, it’s also okay to maintain boundaries. It’s not okay for a person (whether they have a disability or not) to take out all of their anger on you. It’s important to give space, however, you can also use phrases such as “I know you are going through a difficult time. We all miss ____. However, that doesn’t mean that you can take it out in this way.”
This is Part 2 of a two-part series. Read On Learning to Live a Lot for Part 1.
Deborah Ferber is a Field Associate and blogger for Anabaptist Disabilities Network. This post first appeared in December, 2013.