The Moment You Know ...

You hear the words coming out of your doctor's mouth. S/he is telling you your diagnosis, your treatment options, asking you if you have any questions...you hear it. You leave the doctor's office and you may feel shock, sadness, anger, or you may be in denial of the magnitude of the situation. Whatever you may be feeling, you now know. You know your diagnosis. But in that moment, do you really know that something has truly changed? Maybe sometimes, but not always.

Some time has passed. Maybe a week for one person, perhaps a year for another; however, at some point in time that moment will come. It is that moment when a person living with chronic physical illness has an experience where s/he understands and wholeheartedly knows that something has meaningfully changed. External changes in one's life following a diagnosis are easy to identify. For example, changes in one's occupational situation, changes in physical ability, or changes in relationships. However, the moment being discussed, the moment one knows, involves an experience of internal change, such as a recognition of shifts in one's identity, acknowledgment of the meanings that certain hobbies held in one's life, or appreciation of things previously ignored but which suddenly contain importance. This is difficult to understand in the abstract but can look something like this: A middle-aged man was diagnosed with a rare neuromuscular disease which interferes with motor ability and motor fluidity. He is not a professional musician but as a child he took some guitar lessons and can hold a tune. The majority of his friends are either musicians or can play an instrument. While some people socialize at a bar, this man's form of socializing is that all of his friends gather in his basement and they make music together. Despite this man's neuromuscular problems he was able to play the guitar for short periods at a time until one evening when he just could not. His friends were in his basement waiting to play together. He told them that they should go ahead and play. He sat there listening to them night after night. He felt lonely as if he lost a part of himself and as if he was isolated from the group. Something had definitely changed. He had never realized the significance that playing the guitar with his friends had for him. One night, as he was with his friends in his basement, he began to hear the music they were making in a whole new way. It was the same music they had always played but he had never really listened to it in the same way. He realized that when he had played the guitar he was listening to the music from the inside of the group, and now without his guitar he heard the music from a new individual place. He felt so connected to the music and in this moment he knew that something would never be the same. He could no longer appreciate the guitar in the same way again but he realized that he had never seen the beauty in composition before. He started to write music for the group and no longer felt isolated from his friends and from the musical part of himself (This is a fictional case. Nobody's privacy has been violated in writing this.)

With so many external things that change when living with chronic illness, it is oftentimes difficult to make space to reflect on what else has changed internally. Illness can change people. That does not mean you lose your identity or who you are...illness does not have to define you. It just means that like all major events in life it can affect you in some manner. When space is created to reflect on how one has changed internally, a new appreciation may emerge for aspects of one's self previously neglected or not yet present. Oftentimes this space is created after experiencing "the moment"...the moment  you know.