Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.
Don\u2019t let yourself lose me.<\/p>\n
From Go to the Limits of Your Longing<\/a>, by Rainier Maria Rilke <\/p>\n This snippet of a poem speaks to my early, dark days of parenting<\/a> with misophonia<\/a>. Grief<\/a> and despair felt like permanent placeholders. Doom colored the future; not just mine, but my son\u2019s.<\/p>\n By the time Thomas was diagnosed with misophonia shortly after his 16th birthday, the condition was ruling his life. A psychologist explained his palpable suffering and months of disruptive behavior with a single, strange word\u2014misophonia.<\/p>\n One word, one moment, one family\u2019s future redirected.<\/p>\n Misophonia most often, but not exclusively, manifests in childhood<\/a> (Guzick, 2024). This was true for Thomas. He also veered from the norm. His first trigger was not sound, but sight: my leg jiggling during middle-school orientation. <\/p>\n Although misophonia is currently categorized as a decreased sound tolerance, visual triggers are common. Frequently discussed in support communities, visual triggering (sometimes called misokinesia) barely appears in research. The first of the three existing published studies on misokinesia (Jaswal) didn’t appear until 2021, two years after my son\u2019s diagnosis. <\/p>\n The visual triggers that science hadn\u2019t yet acknowledged made Thomas miserable. He was hit with a double whammy. Sounds typical of misophonia, and more, also triggered him. <\/p>\n People with misophonia tend to be triggered by sounds and sights coming from other bodies. Triggers for children emerge among the bodies populating their small worlds\u2014family members, teachers, classmates, etc. Thomas was no exception. His worst reactions were to the sounds and sights of his family members\u2019 bodies, especially mine.<\/p>\n His triggers also cast a wide net that seemed more idiosyncratic than systematic\u2014jiggling legs, flipping hair, wind chimes, sighs, chewing, keyboard clicks, and scraping pencils. Sight and sound pummeled my teen<\/a> from all directions. The afferent world rose as a threat. I felt powerless to protect my son from the sensory onslaught destroying his well-being. <\/p>\n Early Days of Suffering<\/p>\n In those first years, Thomas avoided me at all costs. If he heard my voice, he would dart in another direction. My jawline sent daggers through him; the visual flip of my hair, agony. We spent his final teenage years in the same house, but never together. <\/p>\n I, too, felt hit with a double whammy. My child\u2019s visible drive away from me was nearly unbearable. Watching him suffer? Even worse. I felt trapped in a surreal vortex of confused pain that nobody understood. <\/p>\n Research offered little, either missing key components of our misophonia experience or pathologizing them. Visual triggers were nonexistent or a scientific sidenote; for Thomas, they were central. Managing proximity to troublesome sound and sight was (and remains) my son\u2019s key coping mechanism. These spatial maneuvers against sensory stimuli appear as “avoidance\u201d in scientific literature and are studied as evidence of dysfunction, not adaptation. <\/p>\n Even the best of friends struggled to understand. My daily dilemmas seemed surreal and even suspicious. Your child falls apart at the family dinner table but happily eats lunch in the chaotic crunch of the school cafeteria? The raised eyebrows and doubtful smiles say what people think: something must be going on at home. <\/p>\n Isolation and crisis shaped our days and felt inevitable. Yet they were not. Despair was not my final feeling. Our lives were not reduced to suffering. <\/p>\n Time and Transformation<\/p>\n Today, we continue to live with misophonia\u2019s contradictory dimensions, but the feelings are quite different.<\/p>\n Thomas is 23. He lives just a few minutes away from his parents, on the third (and top) floor of an old brownstone, a semi-secluded corner apartment of vibrant decor, greenery, and gleaming wood. A self-curated refuge of sensory wonder.<\/p>\n Personal Perspectives Essential Reads<\/p>\n Thomas continues to monitor his proximity to triggering sights and sounds, especially bodies, especially mine. But the distance\u2014tangible and interpersonal\u2014between us has winnowed into something intimate, not destructive. <\/p>\n While we can\u2019t sit side-by-side or share a meal, Thomas and I are together in our own creative ways. We talk from around corners, at distances, and outdoors. Sometimes I text or just listen. I follow my son\u2019s lead. Where does he take us? Together. Our together certainly looks different than most but is configured with care and love. <\/p>\n My son, whose life I once feared would be reduced to a bedroom, is a firefighter. He is a prankster and risk-taker with deep social circles. He is a frequent presence. He swings by the family home every couple of days to visit the dog and avail himself of the refrigerator\u2019s bounty. He talks to his parents about his life\u2014his relationships, career<\/a>, hopes, and dreams<\/a>. <\/p>\n What happened between then and now?<\/p>\n Wisdom of Lived Experience<\/p>\n Scientific research has not yet caught up with our personal progress. No study or insight into neural<\/a> networks has made a dent in our day-to-day experiences. Yet we were able to adapt, reframe, and feel different. <\/p>\n The expertise of misophonia advocates like Jennifer Jo Brout<\/a> and the experiential wisdom<\/a> parents and sufferers share in online support spaces (like the Parents of Children With Misophonia<\/a> Facebook<\/a> group) became guides.<\/p>\n Most importantly, we came to understand that respecting the veracity of someone\u2019s sensory reality, rather than outside interpretation, was the primary path toward well-being for all. We stumbled in that direction and walk there still.<\/p>\n But that was not enough.<\/p>\n Existential Crisis<\/p>\n Misophonia marks more than a medical chart. Misophonia is an existential crisis.<\/p>\n Misophonia has become normal for our family. The future I envisioned with my son was gone. What would come in its stead? Where would I find meaning and purpose outside of a physical space with my son? Thomas has even more challenges. Self-determination for a young person with misophonia is no ordinary developmental process but a journey of unique hurdles through our fused sensory and social worlds. <\/p>\n We sought sources of knowledge outside of science. Poetry, art, and philosophy<\/a> became urgently important. The aesthetic and social structure of organized sports gave Thomas purpose and belonging. We realized, and built on, the strength of our existing values, pleasures, and pursuits.<\/p>\n