Compassionate Listening Is The Key To Caregiving
Lately, I've been into reading self-help books, meditating, and learning about Buddhism. The most recent book was "You are Here" by Vietnamese monk, Thich Nhat Hanh. In it, he describes the concept of compassionate listening, that is, listening with the intent of being fully present for another person. This differs from other types of listening as typically we use that listening for reacting and solving.
I remember the moment I read about this on the train. I was on my way to work and it struck me deeply. As a caregiver, I had until that moment been listening in order to solve Keegan's problems. How can I alleviate pain? How can I help his fatigue? I would eventually spiral into a series of questions to Keegan that overwhelmed both him and me.
What happened when I didn't listen compassionately
For Keegan, my questioning wasn't what he needed. Sure, questions can be part of compassionate listening, but I asked him questions that pertained to solving every problem. "Do we need to get ahold of your doctor?" or "Did you try doing your yoga yet?" This wasn't what Keegan needed. He needed social support in the moment. He needed to know that someone was listening to the suffering he had going on.
I ended up getting empathy fatigue so often. I remember going to work some days filled with guilt knowing Keegan was back home in pain or in the midst of brain fog. I couldn't do anything about it. My day was filled with Googling help to solve his problems, and texting him articles in between meetings.
Empathy fatigue is a real problem for caregivers. Also known as secondary traumatic stress, it's the emotional and physical toll of caring for others. Essentially, over time, our ability to empathize lowers and our own selves suffer the more and more we take on other's suffering. It can lead to being burnt out, depressed, feeling hopeless, and becoming cynical.
A complete difference once I changed my approach
Thich Nhat Hanh describes compassionate listening as deep listening with one intent: "helping him or her to empty his heart." I never approach listening that way. For me, listening was to solve problems. I never saw the act of listening a part of caregiving. In itself, listening relieves Keegan of the mental and emotional toll of ankylosing spondylitis.
About a week after this revelation, Keegan had a tough day. He felt lonely as a stay-at-home dad with a chronic disease and chronic pain. He was crying over lunch and I didn't know what to do. I took some deep breaths and asked him if he wanted to talk about it. I told him I'd be happy to hear what he was feeling in that moment. So I did. I sat and listened. I saw the act of taking in the information as healing. I didn't find another article about how to help his pain. I didn't find meet ups online for him to find other stay-at-home dads. I just listened. I didn't correct Keegan when he said, "I'm lonely." I guess technically that's "wrong." He has Kaya and me, but his underlying suffering was more important than pointing out the technicality. This is the key to compassionate listening.
Steps to healthier caregiving
I was shocked after 45 minutes of Keegan pouring his heart out that I wasn't fatigued. I felt strangely energized. This was caregiving and the first steps to a healthier caregiving. This also opened up another opportunity for us: Keegan came up with his own solutions. Me listening gave him the space to process the moment and bounce ideas off of me.
Sometimes caregiving is much more passive. It's not about putting out fires all the time. I've had to accept that I can't fix Keegan's ankylosing spondylitis. (And as someone in a creative profession, that's a tough pill to swallow.) I'd love to know how others cope with loved ones with AS, how caregiving changed overtime for them, and what practices you use to get through the tough moments.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?