Our associate rector the Rev. Dr. Craig Lemming; our deacon the Rev. Judy DesHarnais; our seminarian Trevor Sannes; and parishioner and lay leader Susan Creel have been meeting to discuss and plan how we can begin the work of greater and more purposeful Disability Awareness and Inclusion here at St. John’s.
July is Disability Pride Month, and will mark the kickoff of this work of inclusion. From now through the end of July, we are offering a series of weekly articles written by parishioners who experience disabilities, both visible and invisible. In these reflections, they will share how their disabilities intersect with their faith and participation in the church community.
by Sarah Stengle
I have been a member of St. John’s since 2014. For many years I was part of the choir, an experience that I cherished. I am grateful to have been asked to contribute to July’s conversation focused on disability and inclusion by writing about several invisible disabilities that I have and what it is like to live with them.
I have hyperacusis, trigeminal nerve pain, paresthesia, and peripheral neuropathy. For those who are not familiar with these terms:
- Hyperacusis is a hearing disorder where everyday sounds are perceived as unbearably loud, distressing, or physically painful.
- Trigeminal nerve pain is a chronic facial pain disorder.
- Parasthesia is the medical term for the “pins and needles” sensation. It is characterized by burning, prickling, tingling, itching, or numbness on or just beneath the skin.
- Peripheral neuropathy is loss of feeling.
The hyperacusis and trigeminal nerve pain were the result of getting hit by a car when I was eleven. My jaw bone was pushed up into my ear socket and I was in a coma briefly; I emerged with minimal but very real traumatic brain injury limited to auditory issues. These were not debilitating until 2021, when the trigeminal nerve pain started and my hyperacusis became extreme.
Either condition alone is not that unusual. Trigeminal nerve pain is usually triggered by touch. Mine, however, is triggered by high-pitched metallic noises such as bells, buzzers, beeps, chimes, sirens, and whistles. When these noises stop, my face pain continues on—sometimes for three hours and sometimes until the next day.
When I go out I am always masking, because the whole world is too noisy for me and I am in constant chronic pain. I am used to this. However, add in bells or whistles and it becomes unbearable. When I return home I am exhausted. But I still think it is important to go out, see the people I love, and do the things that interest me.
People who say, “Oh you don’t have to mask around me,” have no idea how socially impossible it is not to mask. Not masking means getting asked “Are you ok?” constantly. If I answer honestly, “No, I am not (and I never will be-)“ or “I am in chronic pain and can’t tolerate many ordinary high pitched noises,” it kills all the joy in the room and shifts the attention away from my friends, family or the event I am attending. That is not the relationship I want to have with my communities or loved ones. I usually don’t want to be the center of attention. I am an introvert. People naturally get concerned and so unmasking diverts attention away from everyone else present—and it also doesn’t help me.
Unsolicited advice is what usually follows after being honest—because people truly want to help. “Noise cancelling headphones” have been suggested to me so many times that I get a rage reaction. This rage makes me feel bad about myself because I do! recognize that the intentions are kind. I am frustrated with trying to explain the complex and non-intuitive reasons why noise cancelling headphones make my condition immediately worse. I wonder if people think I haven’t gotten good medical care or done what is possible? I have a cohort of specialists at the face pain clinic at the University who coordinate my care and teach me how to best live with these conditions. I benefit from acupuncture for pain management and dislike taking drugs. I do not welcome advice from others. I wish I could learn how to be more mellow about receiving advice in the spirit it is offered and responding without reactivity. I am working on this. As it is now, I need to mentally rehearse my response to not being reactive to “noise cancelling headphones” or other advice. Because I dislike myself if I meet kindness with irritability.
I have often wished I had big visible scars like “Poldark” or Jason Momoa. Because I look fine, people assume I am fine. When I tell people I can’t stand wind chimes, they might respond with, “Oh, I don’t like them either.” But I map my daily dog walks through the path of no wind chimes not because I “don’t like how they sound,” but because they make my face feel like electric bees are buzzing under my skin.
People who sit near me know that I leave the service before the bell choir starts. I have to either go into the downstairs ladies’ room or exit the building. I now sit in the back so I will be less noticeable if I slip out of the service briefly. Even if the music hurts me a bit, I am immensely grateful to the music ministry because I LOVE the music so much. I miss being able to sing with the choir, but it was a great run. I am so grateful for the years I was a chorister, and the wonderful friendships that continue.
I still enjoy my life and am full of gratitude to my family, friends and the St. John’s community. I still love being an artist and am mostly okay at home. I think the thing that I miss the most is that I can no longer depend on myself to be resilient. I used to be able to handle a lot of different stressful situations without losing my equanimity. Now I am fragile. I used to be able to help people out, but now visiting someone in the hospital, for example, is very hard for me because of all the beeping monitors. Airports require medication; I can no longer travel by air without assistance. Now I can hardly stand the ordinary noises of being outdoors, (birds, sirens, leaf blowers, crosswalk beeps) and so I stay indoors a lot and live a very quiet life.
So what helps? It helps me if the people I know understand that my face hurts, because I twitch and wince and also touch my face more often than other people, and I don’t want people to think I am annoyed. I am usually not annoyed. It is a bit of a conundrum because I want people to know what is up with me, but I also truly don’t want to talk about it very much. I am still trying to navigate getting that balance right: how to inform people without opening myself to pity or unwelcome advice, or ruining the “vibe” of an event or gathering.
In short, I want people to simply be aware, but I rarely want my problems to be the focus.
I am immensely grateful to St. John’s. I am more fragile and irritable than I used to be. At St. John’s, I experience support and kindness. I am so grateful. I wish I had more strength and resources to give back to this community because I have received so much.
And, also did I mention how much I love the music program at St. John’s? That too. It’s been amazing.