How Far We’ve Come

by Janie Rakow

Hard to imagine, but it’s been ten years since I took my end of life doula training with Henry Fersko-Weiss at Valley Hospice in New Jersey. I had been a volunteer at Valley for some time before Henry started the doula program there. When I was offered the opportunity to take the training, I had no idea what an end of life doula was, nor did I know how I would use my new skills. But I embraced the doula concept immediately, and my life was forever changed. I began an incredible journey that led me to devote myself to serving the dying, and eventually, to be one of the founders of INELDA.

After my training, I hit the ground running and participated in many vigils. Within a few years, I was working with people on life meaning, legacy, and facilitating reprocessing sessions with family after their love one died. I loved my “work” and wanted to tell anyone and everyone about it. Inevitably, I would be at a party, a soccer game, a PTO meeting, and someone would ask: “What do you do?” I would enthusiastically say “I work with people who are dying. I’m an end of life doula.” The immediate response was “You’re a what???” Then, I would launch into a lengthy explanation, because I felt they needed to know everything. Inevitably the conversation would end abruptly before I was done, when the person would say: “Oh that’s so nice,” as they changed the subject or walked away.

Then, about two years ago, well into my work at INELDA, I started to notice that my “job description” had changed. I no longer went on and on explaining the work I did as a doula. I would simply say: “I work with people at the end of life.” Instead of the typical blank stare, people would say things like: “Tell me more,” or “How is an end of life doula different from hospice?” Then people would start to tell me their own stories. Like the woman who told me about her mom, who died in hospice care a few years earlier, without ever accepting that she was dying. Or, the man whose dad died and he wished they had had a doula. People started asking for my phone number so they could pass it along to other people who could use a doula.

Friends starting referring my services to their friends. People in my community who heard that I was a doula started reaching out for advice. Acquaintances who were diagnosed with a terminal illness would call me, sharing feelings that they weren’t ready to share with anyone else. Family and friends emailed me articles and editorials about death. Everything death related was sent my way! I realized that the change I was experiencing in my circle of friends and family was a sign of a wider societal shift. Speaking about death and dying was no longer quite so taboo. The world was beginning to hear about doulas and thirsted to know more!

Now, when I think back to the beginning of my work as a doula, I am amazed at how far I, and we, have come. Not just in advancing the mission of INELDA, but in spreading the message that it is OK to have conversations about death. The more we can normalize this aspect of life, the more we can speak openly about something that is going to happen to all of us. I am so delighted to be part of this end of life doula movement and witness its growth. I can only imagine what the next ten years will bring!