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When Sanctuary Is Offered

I recently had an experience that I need to talk about. I was deeply impacted by what happened to me, and how it is affecting my life.

While I was in the USA during April, my hearing, or lack thereof, crept in and hit me on the head in a way that hasn’t happened before. I’ve always stuffed it, compromised, and passed off the fact that in a crowded room I can’t hear well at all. I’ve tolerated conversations that drive me to the point of severe sensory overload. I’ve behaved as if I don’t really have a choice but to be socially polite and endure the pain that is causing my head to melt down from sensory overload.

On Wednesday, April 26, I snapped. Maybe it was because I was with friends; it could have been because the noise levels built up slowly over time. Or maybe it was something else. Whatever it was, it all came together in an instant, and I could no longer endure what I’d put up with for years.

I’ve heard it all when I tell people that for me, social situations are beyond difficult. “We can isolate you in a corner.” This is the most common thing said to me. What has never been asked is this: “Gail, what do you experience in a room?” I’ll tell you: What it sounds like when I’m in a room with conversations buzzing around me is like noise coming at me all once—so much noise that nothing can be filtered out. Hundreds of conversations flooding into my brain that I hear simultaneously, and I have no means of screening out the voices that I need to hear in order to have an intelligent conversation.

I’m not kidding around when I tell people that attending social events is like fingers on the chalkboard! Ultimately, I feel as if I’m not believed. A person with normal hearing can focus in on the conversation, discriminate, and carry on in a crowded room. Even with the hearing tech I have, there is not a solution to tune out the disruption of a crowd. I’d love a hearing aid that tunes out a crowded room. They aren’t to be had.

What this all boils down to is the choice to engage socially or to withdraw from group participation. That evening in April changed the way I’ll do things in the future. While sitting at a table in a church social hall, my friend urged me to leave the room and seek out a quiet place. I didn’t want to do that because I didn’t want to look like I was being rude by withdrawing. I had come to be with people, not separate from them. She kept urging me to leave, and then her husband walked me out of the room and into the chapel where the noise came through but was tolerable. I was still fully aware of the noise, and it was tolerable. There we sat. He listened, and I let it out.

I suspect what I let out in spoken words were words so many others with a hearing loss might have uttered. “This is so hard.” Crying, and being disgusted by my vulnerability, yet not being able to stop the tears, I slowly realized that for the first time in forever I was strong enough to speak my truth and the truth of others: It is beyond hard—it is more like impossible to do what we do. I came to know, and understand, that socializing is something I’m better off not doing.

Socializing is something that is not enjoyable for me. It taxes my head and my hearing. I can’t understand conversations and at times might not give a correct response and be looked at as if I’m a Martian. I can’t read lips due to my visual impairment, and that makes it harder. I’m in strike-out mode from the very beginning of the situation. So, count me out.

I’m done compromising when a compromise won’t ever work. I’m done with people not understanding the reality of my hearing situation. I’m done being nice because being nice won’t get me what I need in social situations. Done.

Now, you’re thinking, certainly, that there is help. Try a google search, try several searches, try to find a simulation of what we go through. You won’t find that information. What you will be told is to get your hearing checked. If you’ve got friends that you want to help with a fix, there isn’t a fix. 

The downside to this is the social cut-off, and the isolation it brings. Saying no to social events cuts one off from so much. I’m taken back to the time when, as a teen, I quit doing dances because I was not asked to dance, and I was too scared to ask anyone to dance—even the “girls’ choice”—so I stopped going. This has its parallels. The difference is that I’m older and making the decision to meet the needs of being disabled. As I sit here typing, there is the uncomfortable feeling that I’m doing this for myself, knowing that it will cut me off in so many ways. I’ll now have to deal with holding a line, dealing with well-meaning people who want to make themselves feel better about things than listening to what I’m telling them. What I feel, and have to do, makes people uncomfortable. Staying home, staying in, and keeping my head in a good place is something I need to do for so many reasons. Please honor me by honoring my needs. Listen to someone when they say NO. There are good and healthy reasons for the boundaries disabled people set.

Realize that I can do a small group in a quiet space. If you really want to see me, call, drop by to say hello, and leave the mention of group contact out of it. I’ll most likely know what is happening. I’m not going to become antisocial.

This experience has taken me to the thought of legislating accessibility. While the US government has put the Americans with Disability Act (ADA) into place, and government web sites and buildings must comply with the ADA, it does follow that a business or other organizations must do so. Smart business owners have made things accessible. Ramps and ATM/PIN machines are two examples of accessibility. The catch here is that one cannot create quiet social places. I get it. There are things that cannot be mandated or legislated. I must care for myself, and sometimes that means speaking up, being an obnoxious person, and fighting for a peaceful environment. One night this last April, I found some peace in a sanctuary where I was heard. Being heard has led me to caring for myself, and a journey to speak out for others.

The path forward is to educate. It begins by listening to understand another person’s reality and their point of view. It progresses when we each become sensitive enough to consistently honor another’s truth, not by fixing it but by honoring their reality and what is needed to meet their needs. Maybe it is sanctuary.

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