Not so long ago, I wrote my first article about lip-reading in the masked world, the challenges it poses, and the limitations it puts upon those of us who rely on seeing others’ faces to communicate. Countless parts of that article still ring true today, months later, and its still just as incapacitating as it was then.

Actually? More so.

It is disheartening that we are here, so many days, weeks, months and yes, now years, into this pandemic with little change regarding people’s willingness to do the right thing with respect to benefiting others. To be sure my point is clear, I’m talking about wearing masks and vaccinating to slow, halt and perhaps end the pandemic. Even if you aren’t scared of getting Covid. Even if you aren’t at risk. Even if you don’t like being told what to do. Because it’s the only thing that’s going to end the toxic stranglehold Covid has on the world, the mounting deaths, the exposure quarantines that keep our kids home from school regularly and the mandated mask wearing that prevents communication for people like me, who cannot hear and rely on reading lips.

It may seem paradoxical to stand firmly behind the wearing of masks to prevent the spread of infectious diseases and simultaneously be crying out that masks are unquestionably ruining my quality of life. But like many things in the world, there is no black and white when it comes to this issue, only a million shades in between, including a whole grayscale of the challenges for those who rely on lip-reading.

At some point in 2021, many mask mandates where I live were lifted. I believe vaccines were just getting started and the most recent surge was waning. Still, it seemed to be a risky move. I recall speaking with a friend who said to me you must be so happy that we can ditch the masks! And it was weird. There was a clenching fear that we were just throwing out any traction we’d gained over Covid by eliminating mandated masking. And in doing so, we were only going to further tunnel ourselves into a world where non-mask wearing will have consequences (spoiler alert: that’s happening.) But yes, for me personally, there was relief.

The world, for a period, suddenly felt so easy. Every time I went to the grocery store and the cashier said how are you and I was able to answer great, how about you instead of nodding or smiling (which they couldn’t even see) behind my mask. Every time I ran into a friend in public and was able to have a conversation instead of ducking into another aisle to avoid the awkwardness of that person talking and me not having a clue what was being said. Being able to sit in an outdoor restaurant and when the waitress asked me what kind of dressing do you want and not having to look to my friends for help. I had forgotten how easy my hard life of relying on lip-reading and facial cues to piece together speech was. Without masks, it was a dream. It felt like I had been wearing shackles for a year and they’d finally come off. Human connection was restored.

It didn’t last. And with the return of Covid surges, variants, and the rise of many workplaces requiring their employees to wear masks and be vaccinated (moves that I fully support in the interest of ending this) it went right back to everyone’s face being covered and stricter regulations everywhere. And that is how I found myself in the office of my children’s pediatrician, fully expecting to be accommodated with clear shields as I had been for twenty months, only to be told that, due to Covid exposure in the office that day, they would not be wearing shields in place of masks.

Except, they told me this while wearing masks. So I had no idea, none whatsoever, what was going on.

Imagine the demoralizing debilitation I felt, sitting in the office a lifetime provider (fifteen years) and being treated as if they just did not care about the details of my disability. Literally: the nurse, who I have known for years and who knows I read lips, continued to talk rapidly and loudly at me from behind her mask. I interrupted her to remind her, politely, that I had no idea what she was saying. She continued anyhow. She wheeled in a sign language monitor all the while still talking briskly. I reminded her again, as I have every single time someone thinks they are helping by wheeling in a sign language interpreter machine, I do not sign. I wear hearing aids and I read lips. I cannot communicate if I cannot see your lips. I stated this information, which she knows. And still, her agitation grew.

Her bringing in a sign language interpreter machine, knowing it would not help me, felt like a slap in the face. It would be akin to someone saying that they only speak Spanish, being offered a German translator, and then being treated with annoyance when it’s clear that accommodation is not sufficient. Its analogous to a wheelchair bound individual being told, sorry, no ramp. You’ll have to climb up the stairs and we don’t really care if you can’t do that. That is what it feels like.

At this point I was beyond frustrated. She continued to talk at me, her voice loud, her tone and body language clearly spewing her own agitation. My children stared at the floor, not sure how to react. She finally turned to my son and asked him to pull his mask down and repeat to me what she was saying. What she was saying was, she was not comfortable removing her mask or wearing a shield. She was, therefore, not going to do so. There had been numerous positive Covid patients in the office that very day, and she had been exposed, therefore she would not be removing her mask.

All justifiable. So why am I upset? Clearly a person’s right to protect themselves from an infectious disease is higher on the scale than my right as a parent to communicate with my child’s doctor. Right? Clearly, her stress and concerns were more valid than mine, right? Well, sort of. This is what I mean by the miles of space between black and white.

I will tell you why I am upset. And upset doesn’t quite cover it. Debilitated. Demoralized. Angry. Frustrated. Weary.

I am angry because its not early 2020 anymore. We’ve been navigating this for nearly two years. I cannot be the only individual in the world who reads lips. I cannot be the only individual who communicates regularly with their provider about their needs: clear shields, emails instead of phone calls, please face me while you talk. I cannot be the only person who has experienced this total shutdown of their ability to function as an adult and a human being.

The kicker is that there were so many other ways this situation could have been dealt with. She could have written her concerns down. The receptionist, who sat behind plexiglass with her mask around her chin, could have informed me of the conditions in the office that day. I could have been messaged ahead of time that no one on staff was going to be wearing a clear shield. This would have given me an option to reschedule or bring another adult along. At the very least I wouldn’t have been blindsided.

There could have been notes on my kids’ charts to remind them, she doesn’t use sign language. There could have been one ounce of compassion for me instead of the callous way she spoke at me. Because along with reading lips and facial clues to understand context, I am very, very good at reading body language and interpreting someone’s tone. I may not have understood her words, but her message was clear: your disability is not my problem, if you don’t use sign language that’s not my problem, I’m providing you with an alternative method but if that doesn’t work its not my problem, I don’t have time for this.

I will say again, her unwillingness to remove her mask is justifiable. I would never ask someone to remove one, and I understand the clear shields aren’t quite as protective. But asking my kid to remove his mask, in your office where you state positive Covid is flying around was completely unprofessional, unsafe, and inappropriate on all levels. This was a situation where she could have, and should have, done better.

So, I’m pissed. Because this is an office where I’ve been a frequent flyer for over a decade. This is an office I’ve been in multiple times since Covid began. This is an office that’s nearly a forty-minute drive, but I’ve stuck with because they know me, because they have an online portal to eliminate the need for phone calls. Because I expect that at the very least, if they cannot provide me with reasonable accommodations (which by the way, is required by law) that they will at least be kind. Because I experience unkindness in this arena everywhere. Every day. Every single thing I do that’s outside of my home or my social circle is this.

Explaining. Waiting for the inevitable stare, the irritation, the annoyance. Reminding said person (receptionist, clerk, whoever) five minutes later, again. Often just not understanding and letting it go, playing the part of a rude person because I have no idea how to go forth when verbal communication is impossible. Just the day before I went to receive my Covid booster and the pharmacist stared at me with worn out eyes. She then yelled at me while she spoke and I had to say, I still can’t understand you with the mask. She yanked it down (it had been down prior to her coming up to help me, so she clearly felt safe in her plexiglass box) and continued to speak in a loud and condescending tone. I asked her to let the medical tech know he would need to get my attention instead of just calling out my name and this request, too, was met with a look of annoyance. And obviously ignored/forgotten because moments later the tech called out a name (mine, I deduced since I was the only one there) from behind a screen.

I don’t really know what I’m asking for or have any solutions other than: we need to do better. Two years after this nightmare began and still, we’re wearing masks. Still, this disability is not accommodated. Every single day is like Groundhog’s Day. The repeating, the asking, the stress, the mental fatigue that comes with it. The annoyance (and its not everyone, everywhere, but frequent enough to be the norm). The frustration, the embarrassment, the hopelessness that this is going to go on for so very much longer than I ever expected. That a huge chunk of my life is just…lost. In normal, non-masked situations, I still miss so much. With masks, I miss everything.

Every bank teller transaction, every time I run in to the principal of my kid’s school at pick-up, every chiropractor appointment where (and this is done out of kindness) they simply don’t talk to me because they know I can’t converse. Every school event I don’t attend because of masking, every parent teacher conference that’s been in an email instead of in person. Things that used to be simple pleasures, like chatting with the person who asks do you need any help in a store now becomes fraught with anxiety…did they ask if I need help? Or did they just say hi? What do I say back? Usually, I just walk away…some days, it just feels pointless to even try.

In conclusion…the situation at my kids’ pediatrician is not the only experience I have had like this, clearly, but it was for sure one of the worst, and maybe it just came on a day that would fit neatly into the straw that broke the camel’s back phenomenon. I had picked up one kid and one school and one at another, which equaled two back-to-back masked experiences where two secretaries tried to talk to me, to no avail. I was already exhausted from the stress of those two things…yes, two simple interactions. Not wanting my kids to be embarrassed. Not wanting to accidently break a Covid rule like waiting in the wrong part of the lobby or coming in when I was supposed to be waiting outside. The anxiety of ringing the bell and not knowing if this would be easy, hard, frustrating, or humiliating. And just the sadness of not being able to have a mindless conversation with two ladies I’ve known forever as I would have before.

I’m tired. I’m beyond tired. I am exhausted in a way that makes me not want to be a part of things that once brought me joy: people, social events, human connection. I’m weary of being treated as if my hearing loss equals a lack of intelligence, a lack of respect. I’m for sure sick and tired of the reaction of annoyance at the inconvenience that my hearing loss seems to cause for others. Its frustrating for you to try and have a conversation with me? Imagine being me: every second of my whole life is like that.

In those vast winding roads of gray between the black and the white lies what I think I’m trying to say. We need to do better. We need to be wearing our masks for the sake of human beings as a collective. We need to be vaccinated to protect ourselves, but also to protect others as well. Its only when we do this that this pandemic will wane, and the chance of returning to a semi-normal world will become a possibility. And yes, the main reason is Covid (sometimes) equals death. But there are a million other reasons too, and one of those is for people like me.

Because life is important…but so is the quality of life. And the quality of life is nothing without human connection.