I have lost a lot from my disorder. Misophonia causes a fight/flight/freeze response to visual and audial stimuli. Whistling, chewing, leg-tapping, and other normal events become noxious to me. It is painful. There is no “ignoring” this. Once my amygdala faces a trigger, there is only escape. If I do not escape, the pain builds. Since this is accumulative, if I do not escape, I can end up with a migraine. I can get sick.
This week, I have lost something much greater, much sharper, much harder to deal with. A woman I love dearly, and will with every breath that goes forward, passed away. I come from a Catholic family, and grieving is something not only expected but enshrined in community.
News surrounding misophonia mostly focuses on “chewing rage,” on the family impact, or on the inability to comply with day-to-day life-events. Misophonia, in this outreach, has gone beyond that. It has taken away my humanity, my ability to say goodbye to someone I love.
Unlike many I have talked to, I have not had misophonia my entire life. Some consider this lucky. I do not wish to discuss the implications of childhood vs. late-onset. That is not part of this story. The story is that I have buried many loved ones. I have been present at funerals, wakes, and have taken part in the grieving process. I know these events do not “solve” death. What I have learned from wakes and funerals is that to move on from death, and the loss of a loved one, we must be together.
As an advocate I have talked about misophonia’s impact on my life time and time again. I feel as though I have a deep and meaningful relationship with coping with this disorder. I feel failed by all of this. I feel lost, sad and scared. More, I feel as though I have had an important spiritual and life event stolen away from me.
I must move forward on a path of grieving that redefines my views. I am trying to move forward and respect the life of a loved one without being able to fully engage with her loved ones. I am trying to move forward, alone, in a way that respects my love for her. I don’t know how to do this. I do not know how to sit alone in a room and quietly show loud respect for a woman who I believe deserves better from me. I wish I could have sat there in the room. I wish I could have shared in the grief of family, friends, and other loved ones. I could not.
I am grieving her loss. I am grieving my loss of grieving. I feel guilty for not grieving “properly.” I feel guiltier still, that my own problems have overshadowed my grief for her. I know there are no answers. I feel lost, and I feel sad.
This is not necessarily a story of hope; it is a story of loss. Loss of self. Loss of love. It is a story of finding meaning in a silent room. I know her love surrounds me, but I do not know how to share this without being able to face a crowd. What I do know is disorders are important. I know it is important to show love and kindness to others, especially those in pain. I know this because people like her have taught me. As a nurse, Anne-Marie showed me kindness and compassion have the power not only to change the world around you, but the whole world.
Disorders like misophonia require constant advocacy. The world does not know us. We are not merely patients; we are people in pain. We are humans who are loving, losing, and finding new ways to find love for each other.
As advocates and as people, we must ensure the world we are creating is one that has more love for others. We must realize that even when we do not have the answers we are capable of caring for each other. Even in our struggles, we must understand that if not for people and if not for love, what are we fighting for? While I may not be able to mourn in a room full of others, I can profess my love to the world. I can tell the universe that she was here. I can tell the world that her love now lives in all she’s touched and will continue to grow and change the world.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo by Akilina Winner