MDF Conference Day 1

Tonight I got the amazing opportunity to spend time in real human conversation with two of the most important researchers in the scientific myotonic muscular dystrophy community – Dr. John Day (https://med.stanford.edu/profiles/john-day) and Dr. Jacinda Sampson (https://med.stanford.edu/profiles/jacinda-sampson) of Stanford’s Neuroscience Health Center. These are some of the most experienced and published clinical researchers in the community. I’ll tell you what – for me this was cooler than meeting Chipper Jones.

A friend told Dr. Day and Dr. Sampson separately about From My Mother and my family’s story, and both took an active interest, yes in part in the book, but in me as a person. It was so gratifying to have genuine talk time with Stanford renowned researchers spending time listening to stories of my childhood, my dreams of advocacy, and some of my concerns with care.

It was humanizing that both Dr. Day and Dr. Sampson took the time to listen to me. I mean it, they listened. They asked questions. They let me finish sentences. They let me ask them questions. They looked me in the eye and smiled. They understood.

In fact twice in the night someone else came over to talk to Dr. Day, and he came back and found me to continue our conversation and apologized for getting pulled away. The second time Dr. Day spoke with me, he asked “so how are you handling this? I know that first conference must be hard.” His empathy and authenticity in our short time together left an impression I’ll never forget. He cared about how I was doing. His background let him anticipate some of my potential difficulties, and he cared to reach out to try to make my existance a little easier, a little warmer.

Dr. Day didn’t treat me with a prescription or diagnosis, and I didn’t need that. He treated me with care. He was interested in me as a person. And honestly, he helped me feel well.

Dr. Sampson listened to me tell her about my experiences as a child with the Primary Children’s Hospital in Utah and how Dustin’s time with them in research trials was the best time for me as sibling because the staff took the time to educate me in the process of treating my brother. Turns out she had done her internship, residency and fellowship there but not quite at the times where our paths would have crossed. But we talked and shared an important common memory. She validated a part of my childhood that few other people could.

Doctors like Dr. Day and Dr. Sampson who care genuinely about people and put effort, energy and empathy into families – even families that were never their patients – these type of doctors can make a world of difference.

Empathy matters and it filled my heart with a hopeful satisfaction to spend time with a whole room of people who know how important the human aspect is in working with families affected by genetic disease. As a sister and a daughter, I’m grateful doctors like Dr. Day and Dr. Sampson give their efforts and empathy in care and a cure for myotonic muscular dystrophy.

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