By Jerad J. D. Rider

Today marks a year since severe noxacusis sufferer Patricia Rose Bylsma took her life. She also suffered from mild reactive tinnitus, extreme sensitivity and pain to light (called photophobia), and a neuropathic condition where her skin would hurt when wearing clothes (possibly allodynia, although she hadn’t been diagnosed). Her ear and eye symptoms began after a rollercoaster concussion in 2013, and her skin condition followed in 2024. On the day she died, she was 33 years old, and her birthday was three weeks away.

Her day-to-day existence had centered on avoiding sound and light, and attempts to carefully choose her clothing had become difficult efforts which often didn’t pay off–at best, its touch felt like sandpaper, and at worst, stinging and burning. Condemned to a world of darkness, she always wore an eye mask, unless her eyes could handle her dimly lit bedroom with the curtains drawn. She wore earplugs and earmuffs 24/7, but the sounds of nature and life would still torture her with jabbing and burning sensations deep inside her ears, because hearing protection has its limits and many frequencies of sound are able to breach it.

She was living a life detached from human dignity. At catastrophic levels, these conditions make it almost impossible to live a meaningful life, because sound and light are part of everything we do, and if you’re forbidden from engaging with both, your life amounts to hiding to protect yourself. Even the sacred coping skill that nature has decreed–the tears that foster venting–is now denied to you, because tears are what? Sound. The sniffles and the vocal despair. Everything is sound. So for many it becomes an exhausting cycle where they try to preserve the little that remains of their damaged hearing system through sound avoidance (hiding), but it’s often futile since sound is so common in life. Not hiding, as reported by many sufferers, including Patricia Bylsma, made their symptoms worsen. So it’s not a choice but rather a necessity, and a cruel one at that.

After enduring 11 years of physical torture, where a next-to-zero quality of life had made it clear that her symptoms would not improve but only worsen beyond what was already not acceptable, Patricia couldn’t take it anymore and chose to suicide. It’s a tragedy and reveals how certain disabled people are left in the dust by a system that isn’t doing enough to try to treat or cure their health conditions. Disabilities relating to the ears get little to no funding overall, so the people who suffer with the most extreme symptoms often have no viable treatment options. Patricia tried a lot of off-label treatments that didn’t work. She worked with doctors and explored medications, but they didn’t raise her quality of life.

No one should feel cornered into suicide. The world needs to look at Patricia and The Wall of Remembrance victims–the memorial Breanne Woods created to pay respect to those who died with hyperacusis–and realize change is needed. We need more funding for research and treatments, and eventually we hope we can get our cures. But we have to start at the bottom.

Many researchers are doing brilliant work, such as Hyperacusis Central’s Scientific Advisor Kelly Jahn, and Dan Polley, James Henry, Megan Beers Wood, Manoj Kumar, Wei Sun, and Thanos Tzounopoulos. They’re doing the best they can and it’s going a long way. Imagine if the funding for research were higher, much higher, as it is for many health conditions. We need the world to understand how cornered we are as victims of aural injuries, to see why it’s important to fund our conditions for research and treatment aspirations. Awareness is important, and showing the world what Patricia and many others went through is a piece of the puzzle that champions for change.

Be a part of change. Spread their stories and encourage people to donate to Hyperacusis Research, a 501(c)(3) non-profit organization whose mission is multifaceted: raising funds for research, developing treatments for hyperacusis, and improving the quality of life for those who suffer with hyperacusis and its comorbid conditions. The donations are tax deductible as much as the law allows. Any help, big or small, goes a long way. We thank you in advance for contributing. Donations can be made by check (please make checks payable to Hyperacusis Research Limited, Inc., and mail them to this address: P.O. Box 1295,
Marlboro, MA 01752) or credit card, or through a DAF (Donor Advised Fund), or a Facebook fundraiser or other online platform. All these options are outlined on Hyperacusis Research’s website (click HERE to visit it), and can be accessed from the drop-down menu at the top of the page. Look for DONATE NOW.

From everyone who has hyperacusis, or loves someone who does: Thank you.

DISCLAIMER

If you’re suffering from suicidal thoughts, you’re not alone. You can call or text 988 for the Suicide and Crisis Lifeline. You can also chat with 988lifeline.org. Or text MHA to 741741 for the Crisis Text Line. Or, for a comprehensive list pertaining to different countries, visit the following link: https://en.m.wikipedia.org/wiki/List_of_suicide_crisis_lines.

*AI wasn’t used to write or edit this article.