A Personal Story of ALS from a VMS Clinical Nurse Educator

By Jennifer Wilson, RN, VMS Clinical Nurse Educator

Michael*, my dear friend from childhood, was an extraordinary athlete and golf pro, a devoted father of two amazing children, a loving husband, and a wonderful friend I miss terribly. I remember the call like it was five minutes ago from Duke Medical Center, where he traveled with his wife to inquire about a vaccine that was being investigated for young men who have ALS that appears to be advancing rapidly.

When we hear a diagnosis such as ALS, also called Lou Gehrig’s disease, immediately our hearts drop, trying to conceptualize such a severe diagnosis in a young man who has so much more life to live. Michael took a different approach when learning why his leg was dragging and progressively getting worse. He wrote us a letter proclaiming:

Today, August 19, 2017 I’m going to start living my life with no regrets and set an example for my two children in hopes they will remember when life smacks them in the face, I was there fighting with them. I am going to show my wife how much I love her and how lucky I am that she married me. I promise to be a better son, brother, and friend to everyone who has touched my life.

As I read this, it hit me like a ton of bricks that Michael was teaching all of us to live in the now. To not fear the unknown and to make “wow” moments with the people you love.

Michael passed away January 3, 2019. It was a very sad day for all of us who loved him and had incredible memories growing up with him. Ironically, there was a sense of peace in the room that was palpable. I learned something invaluable from Michael, and it is the core of my ethos system. I spoke at his funeral and my final words to my friend were thank you. Thank you for teaching me how to relax in the present moment, relax with acceptance of your condition not resisting the fact that things have a beginning and an end, that things pass, there is no lasting substance, and change is inevitable so learn how to accept it and learn from it.

My experience with Michael has illuminated my work at VMS BioMarketing, where I am a Clinical Nurse Educator helping people with complex diseases, providing information about their disease and treatments available to them. In addition to providing education and support, I look at myself as the quarterback of their spirit, providing them knowledge, peace, and laughter during a tumultuous time. People need to be heard, and listened to as people first, not just patients. I’m so grateful I am able to provide a safe environment for them not only to learn, but to release the pain and frustration they may be feeling about their condition.
Thank you, Michael!

*Name changed to protect confidentiality