I know about empathy. I teach about it in my courses. I know we are hardwired with mirror neurons to help us recognize what others are feeling. About a week ago I was at a restaurant with my brother’s family and my friend’s family. My friend has a gorgeous, bubbly one-year-old daughter named Rosie who giggles and lights up a room. The restaurant was so hot and my poor 3-month-old niece, Eliza, would get overheated and start to cry. Whenever Eliza cried, Rosie immediately looked at her and started to cry as well. When my brother would take Eliza out of earshot to comfort her, Rosie went right back to giggling and playing with her food. It happened three or four times. INCREDIBLE. Pure, undiluted empathy.
Through this journey with my mom, my brother and I have received countless gifts of empathy in the way of support from friends, family, caregivers, and strangers. In almost all cases it’s the same as Rosie, others reflect the hurt, the fear, the sadness, the anxiety, the worry of it all. Then we met Lisa and it was different.
We moved my mom to a new facility about two years ago and had to find new healthcare providers. Lisa was a physician’s assistant at the neurology center. Mid-thirties, short brown hair, glasses, white doctor’s coat, and ALL BUSINESS. I don’t think in two years I heard her laugh.
We took mom for her first appointment, where Lisa did the standard intake and history questions with my brother and me. Then she did an assessment of mom. When the neurologist does an assessment it’s a series of questions and problems, like telling time and remembering a string of words. It’s like the SAT of dementia…the higher you score the better off you are.
She said, “Your mom is late middle stage. This disease has about 10 years from start to finish. It doesn’t really matter how young you are when you get it. It’s still about 10 years. Here’s what to look for as signs she’s moved into late stage: loss of speech, loss of ability to hold a fork and feed herself, loss of balance and coordination. She’s probably going to fall and that’s how you will know. She’s at the point where the drugs aren’t going to help anymore. You need to think about what is coming next and plan for it.”
Just like that. No, “I know this must be hard,” or “This is so sad that it’s happening so young.” Nope, none of that. Lisa was all business. She was a big, foam index finger pointing out what was real and present. And the sterile, white walled doctor’s office seemed to squeeze in around us. It was tight and heavy and real. This was happening and it was happening fast and we needed a plan.
What I learned to appreciate about Lisa is that she was also mirroring something that was inside of me. Feelings of strength, resiliency, and compassionate responsibility. But they were harder to mirror because they were deep down inside of me. You had to go past all of the sadness and anxiety and stress to find them. Lisa helped call them forth. She was the most amazing gift we didn’t know we needed!
Every six months we’d steel ourselves for the trip to see Lisa. She’d give us the new reality and a list of what to look for next. She was the only one in our world that gave us the cold, hard truth and knew we were capable of hearing it. It was her greatest gift to us.
Two weeks ago I took my mom to the neurologist’s office. A young, thin, African-American woman sat down with us and started asking history questions and about mom’s medications. After about 5 minutes, I asked her if Lisa was out sick. She said, “No, Lisa left about a month ago, I’m just the temp till they find a replacement.” WHAT??? She left? I couldn’t believe it.
We continued with the appointment and when we were done, the woman said, “This has to be so hard for you. I’m so sorry. You just stay strong and keep doing what you’re doing.” I smiled and said thank you, and thought about how much I didn’t need that kind of empathy. I have plenty of friends and family for that. I needed Lisa’s empathy. It will be missed.