1. It’s not quiet.
Most people think that deaf or profoundly hard-of-hearing people live in completely quiet worlds, that for them there exists a total lack of sound. And while that is true for some, that’s absolutely not the case for me. I hear sound. Constantly. The sound I hear during each of my waking moments is as if someone is blasting a hair-dryer right next to my head. It’s loud and dizzying and persistent, and if I let myself think about it, it will make me cry. Like right now. Lately, and always if I have a head cold or my allergies are acting up, the sound is a helicopter, with the whooshing sound of whirling blades in my head. Trying to decipher and make sense of all other sounds – the ones I want to hear – are on top of that; within the hierarchy of my cerebrum, the helicopter is first.
The medical term for this is Tinnitus, but that nomenclature has never seemed right to me. Tinnitus sounds tiny, like the sound a mosquito makes, small and annoying, and my sound is anything but small; it’s loud and overwhelming and brutally invasive [fun fact: the sound is at its loudest when I am not wearing my hearing aids, so at that end-of-day exhausted moment of relief when my aids come out, the helicopter goes into overdrive]. Someday I hope to make peace with this aspect of my hearing loss, especially because the alternatives are discouraging and dark, but I’m not there yet. My sound serves as a constant reminder of what is happening to me, how I feel my body is betraying me and I am powerless to stop it, and it’s crushing.
2. It’s exhausting.
Hearing loss, that is, the loss of the ability to hear what I need and want to hear – the sounds around me, my daughter’s voice, the person on the other end of the telephone, sirens, the details of my hilarious sister’s story, a knock at the door, the neighbor’s voice who’s stepped up to our shared fence for a friendly chat, my favorite music- is rife with challenges, but the one byproduct that stands out among them all – after the obvious ones of not being able to fully participate in my life – is that hearing loss is utterly exhausting. Holy moly, it is so.
People with hearing loss have to really pay attention and concentrate on every little detail to have any chance of figuring out what’s being said when someone is speaking. Since hearing is diminished one has to watch for all other clues to piece it together: Facial expressions, lip-reading, body language tracking, trying to pick up sounds and intonation [wait, was that a cough or a snicker? Are they telling a story, or asking a question? I think I heard ‘My mom’ so it must be a story about his mother, but what if it was ‘My lawn’ or something else…Eek! did I miss something? ]. Deafness is not just not being able to hear, it’s like putting together a complicated jigsaw puzzle, but with half the pieces missing, and the only way to find the pieces is to decipher a language you cannot grasp. After hours of that, my brain is exhausted and shuts off. It’s involuntary, it just does. And in those moments I need a quiet room where no one is talking so I can hug my pillow, close my eyes, and drool. This supremely sucks because the old me, before the rapid decline of hearing, was a majorly social person who put lots of sweet energy into nurturing the relationships with the dear people in my tribe. Great people who are still by my side today, but it’s not the same; I’m tired, and I get hearing hangovers. Like, after a day of a lot of hearing acrobatics? I will need a day when I don’t have to work hard to process at all. I need hours and hours of non-talking to recover.
3. My hearing aids are fab, but they are not magic.
My hearing aids are fantastic, and I love them, and I indeed depend on them in order to function out in the world, but because hearing aids don’t just make the speech happening around me louder and more clear, they also pick up all the sounds occurring within a two block radius [not really, but close], so every single noise will also be made much louder and crisper than it otherwise would be. Is it garbage day? Those trucks will sound like a fleet of military tanks has just invaded my street. Is somebody running a leaf blower within 200 yards of me? The sound will make me jump up, frazzled, looking for a jet that I’m sure is about to land on top of me. Is my child listening to her favorite soundtrack as she gets ready for school? Groovy, but my brain hears those sounds not as a jaunty piece of music but as a series of blips and beeps and high-pitched clicks with some long stretches of screeching. Oh man. Still, I’m grateful for my aids because what happens if I am without them is equal parts hilarity and madness and I already have menopause supplying a daily dose of both.
4. There’s fear.
My biggest fear is usually inhabiting space somewhere in the back of my head and like a couple of other things in this same category, if I let myself think about it, it will temporarily break me. That fear is that one day I will no longer hear my daughter’s voice, that I will wake up and that will be the day I am no longer able to communicate with her in the same way we always have. I wonder, will that happen when she’s in high school, and I need all the tools available to me to stay connected to her, to know what’s going on? Will I lose the ability to have dinner table conversations and pick up clues about what my teenage daughter might be experiencing, but not directly telling her mother? Will I lose the ability to communicate with the parents of her friends and miss that vital sense of community and bonding that comes when your child has friends and the parents like each other too? I’m raising her alone and contemplating these scenarios sometimes sends me into a panic. I wonder, will it happen before I have grandchildren, so I will never know the sound of their voices? It seems so. Is there ever an ideal time to lose one’s hearing entirely and if so, when is that? And round and round it goes.
5. Sometimes it’s isolating/You gotta get used to the awkward.
Hearing loss is an invisible disability, and as such, it’s easy to miss. But even when people know and get it, the very nature of this deal means one is hindered from communicating with ease, and that is isolating. It just is. With this comes a weird mix of defeat, sorrow, and resignation. In a room full of people, when everyone is chatting and laughing around you, but you don’t get the joke and can’t follow along, you begin to feel alien and disconnected. Or if you manage to jump into a conversation [always an enormous risk when you are never, ever 100% sure what people are talking about] and what you do say elicits chuckles or, worse, the flash of a look that says ‘Huh? What in the world is she talking about?? ‘ and suddenly you’re filled with anxiety and dread, thinking, Ughh! I said the wrong thing, now [that friend/colleague/neighbor/bank teller/waiter/postal worker/veterinarian/person you meet while walking the dog/store clerk ] thinks I’m an idiot, or rude, or drunk. Bloody hell!
Those moments happen every single day no less than 10 times. I have to resist the temptation to rush in, grab the person by the shoulders and say “Wait, wait, I’m not dumb or drunk! I’m just losing my hearing!“ but usually the moment passes quickly, everyone has moved on, everyone except for me. I am an Olympic champion ruminator.
Also when this happens, crawling under a table and hiding, or making an indelible note-to-self never to put myself in this uncomfortable position again is momentarily comforting [‘Never again, sister, and just T-45 minutes till you can make a break for it and bee-line for home, and there you can plan your move to an ice cave in the North Pole, and you never have to see these hearing people again. Hang in there!’], but both hiding under tables and plotting moves to far-flung ice caves further facilitate isolation. There has to be a better way, and I am searching for it.
So here I am, trying to find a path forward, and veeerry slowly finding more ease with this progressive deafness deal. But I will still always prefer to socialize outside where the acoustics are more friendly, and in small groups, and if I don’t come to your loud party this is probably why, but by all means, don’t let that stop you from sending an invitation.