I’m glad that I decided to stay home today. First, let me tell you about my ear and hearing troubles. When I was young, my adnoids and tonsils were too big and the doctors always seemed to not want to remove them! They were so big that nothing could drain properly and I had a perpetual runny noise. I’m not exagerating, it was like I had a permenant cold! I also got really bad ear infections in my left ear a lot. My ear drum ended up with a pin sized hole in it. From there, it progressed until the hole turned into having no tympanic membrane. This membrane receives sound vibrations and transmits to the tiny hearing bones in the ear. There’s more on this link if you are interested. This membrane also separates the external ear from the middle ear.
I also used to get strep throat and tonsillitis a lot. This was very unpleasant, as were the ear infections, and the raw nose from constant blowing. I was miserable most of the time. There was another condition that made me prone to every cold or contagious illness, so I pretty much sick all the time. I won’t go into detail about that particular illness here, but know that it was resolved in my early adulthood (around age 21).
Once I started having trouble swallowing and breathing, to the point that I was actually given an inhaler, the doctors finally agreed that it was time to remove the tonsils and adenoids. Today I wonder what the hell the problem was?! After removing those infernal things, I actually could breath and didn’t have to blow my nose all the time. You have no idea what it’s like to have a perpetual cold symptom. I actually cried when I realized it was gone. I was so happy!
With one problem fixed, we turned to fixing my ear drum. I had several surgeries, from a paper graft to skin grafts. The doctor would cut behind my ear, up above where my glasses arms rest, and take out muscle from the back of my head. He’d use that to patch my ear drum. After five (or maybe it was six) failed surgeries, he said there was no point in trying another surgery. One of my surgeries failed because of high school. I went in to school to get my homework, since I’d be at home for a while, and a kid running at full speed in the halls turned a corner and slammed into me. What hurt a million times more, was the graft tearing apart in my ear. It hurt like a bitch! The whole side of my head hurt and ached.
So I had this giant hole in my ear for all of my teen years and young adult life. I had doctors visits where I was told that they were surprised that it didn’t hurt. One doctor said it was like having an open wound. I either became accustom to the pain, or too many pain receiving nerves were damaged. I don’t know. There were some times when my ear would bleed. Not a lot (not like a nose bleed), but I could feel it, I could semi-taste it when it drained, and I could see it if I used a q-tip to clean it up around the inner edge (not too far) or put a piece of cotton ball on the edge of my ear to catch the drainage.
When I was 30 years old, and it had been more than 10 years since my last ear surgery. I was watching some science medical show where they talked about how far medical science progresses within 10 years. So, I thought to myself, it’s been at least ten years, I wonder what’s new in ear medical science? So I went to see an ear doctor. I told him about my ear troubles. He asked what I wanted to accomplish. I told him, that at this point, I don’t know. I don’t expect anything, but was just curious. He ran a hearing test for me and said I was 75% deaf in my left ear (the damaged ear), and 20% deaf on the right ear. I was surprised to hear that I had any deafness in my right ear! He said that the strain of picking up the slack for the damaged ear is likely what caused the deafness in the right ear. That’s disappointing!! So to further explain, I was told that my left ear could hear higher pitches better, and had a lot of trouble with low pitches. I arleady knew that on my own. He also explained that I had translation issues… IE some things that I could hear volume-wise, I still couldn’t process (or make out the words even though I could hear them). This is why I get frustrated when people YELL when I say I need them to speak clearly. This is why sometimes, I don’t understand people when they speak no matter how loud they scream at me. Please stop it.
There have been times in which my husband will say something, but I don’t understand him. It’s habit to say “What? I can’t hear you.” He will say it louder, and I still can’t understand, and then he yells it, which frustrates me. Sometimes, he’ll start to repeat himself and I’ll interrupt saying “Oh. You said Legend of Zelda.” Then he gets frustrated and confused. How could I have not heard him, and yet heard him? What happens is, I can’t understand what he’s saying, but after a few moments, I piece together the evidence and know what he’s talking about. I can read lips in a supplemental way. I can’t out right read lips without any sound, but I do use minor lip reading in conjunction with the sounds that I manage to hear and the context of what’s going on, to make a fairly accurate guess as to what is said. It’s like filling in the blanks and making the most logical guess based off what I have access to. And sometimes, it’s just the context of the topic and thinking about what words those sounds are similar to and if it makes sense, I’m probably right. However, I can and have been wrong before, which I why I like to ask for confirmation, “Did you say an octopus arm?”. I don’t know if this makes sense to those reading this, but perhaps you can’t understand unless you have hearing loss.
As a person with both vision loss and hearing loss, the hearing loss is the most hurtful. Everyone can see the glasses on your face, so they know you can’t see. But hearing loss isn’t like that, unless you are so deaf that your speech sounds like a deaf person, or use sign language, or if you are wearing a hearing aid. Most of the time people don’t know you have hearing problems, or even if they know, they forget and act like jerks. People will yell at me, even when I tell them it’s not helping. People sigh, grunt, and make frustrated gestures that make me feel shitty about my disability. People opt not to repeat themselves, which often makes me feel left out. Some people get so frustrated and impatient, that they angrily yell at me, and I’m not gonna lie… it’s made me cry and hate myself. Some people will make nasty comments whether they know or don’t know that you have a hearing impairment “Try listening harder”, “I’m not repeating myself if you didn’t hear it. Oh well.” People accuse you of selective hearing and faking it. My parents have done it. My husband has done it. My friends have done it. It’s so frustrating and hurtful when you can’t get people to understand what it’s like to be deaf. It’s a deep emotional pain that I have felt in my heart. Luckily, I do have a very supportive husband, family, and friends. They have learned and grown with me and they are not perfect, so sometimes these mistake still happen. Yes, it still hurts, but I’m not depressed about it anymore.
When I get angry about it, I make it clear that I’m ignoring them, usually by saying something like “Sorry. I can’t hear you when you’re being a jerk.” or “I’m ignoring you, because you’re being an insensitive asshole.” or “Go stick a pencil your ear and get back to me when you understand how I feel.” I know, it’s not very nice of me, but sometimes, you have to make a very clear point.
Now hopefully you understand my pain, but let’s get back to the doctor. Aside from all this, he says that even with the extensive damage to the tympanic membrane, I shouldn’t be as deaf as I am. Those words cut, because I was not faking it. I started to tear up feeling that pain in my heart again. The doctor said not to worry, that once they get in there, they’ll have a better idea of what else is wrong. “When you get in there?” He said that surgery was possible and he may be able to restore some hearing.
So, I get another ear surgery. This surgery was successful. I never expected to get any hearing back. I forgot to mention that I’d been very clutsy and often had dizzy spells. The wooziness I had often lead to me having my hand on a wall when I walked, in order to keep my balance. I couldn’t spin around in circles without getting very dizzy very fast, more so than you would expect. It was like being mildly drunk all the time. Thankfully, that went away soon after the surgery!
The doctor did find out why my hearing was so bad. He said that there was so much scaring in my ear that the bones were fused in place and no longer vibrated. He said that my hearing problems made a lot of sense now. He said he was confident that I was going to regain hearing. This was a pleasant surprise and I was happy that I decided to see a doctor again. If you have ANY condition that has been untreated for a while, no matter what the doctor in the past said, go see a new doctor today! Science does improve over time. You never know what might happen in the future!
So after a week or so, I am in the car going to work and I said “Why is the car making that noise?” My husband and bestfriend didn’t seemed to hear what I was hearing. I tried to describe the sounds and said it was very loud and I didn’t understand why they couldn’t hear. After a few moments of thought, my husband asked awkwardly “Do you mean the noises outside? Are you hearing the cars on the road?” After a few moments, I realized that I could hear things outside the car. I won’t lie, I teared up. When I got to work, it was like a light switch. I went from 75% deaf to suddenly hearing things I never could hear before. I could hear people in cubicles whispering to each other and actually hear every word. I didn’t mean to ease drop, I was just shocked. I actually cried tears of joy. It felt so surreal!
When I see a video of someone who is profoundly deaf, or far more hearing impaired than I, who gets to hear for the first time and see their emotion. I understand. I can only imagine how much happier they are than what I felt. It’s a little overwhelming.
I had experienced things I did not expect. Obviously, I had some trouble hearing customers on the phone especially when there was background noise… but now… I had a lot of trouble hearing customers on the phone, because everything around me was so loud! I marveled at things that I had never felt before. I went to a movie and the surround sound was breath taking. I’d never experienced surround sound like that before. There was a lot of things I didn’t know I was missing out on! Again, I teared up because it was amazing. Shit, I’m tearing up writing this! I used to get so dizzy at concerts that I would hold on to my husband. I went to a concert after the surgery, and that wasn’t an issue anymore. I traveled by plane, and by car, and felt pressure changes I had never felt before. I felt weather pressure changes in the air like I’d never experienced before. It was a little unsettling and even four years later I’m still not accustom to it.
I don’t say “What?” half as much as I did before. While not all of my hearing was regained, a significant amount was. The doctor warned me that scarring will happen and my hearing will likely gradually fade, but we don’t know to what degree. It’s been four years since that surgery. I have noticed that I say “What?” a little more often, that translation issues occasionally happen, and some of that old clutsiness has come back. It’s been a great 4 years and I imagine that the scarring is catching up with me. I think that surgery will happen again some day, because I don’t want to lose the hearing and the experiences I’ve gained.
Yesterday, my ear was bleeding and I felt some drainage. As the day carried on, I felt ill and dizzy. I called the doctor and she said that normally they wouldn’t prescribe anything, because it’s likely a cold, however because I’ve had ear surgery there is a concern. I said, “but the surgery was four years ago” and she said “Only four years? It’s definitely still a concern.” She prescribed me antibiotics, both in pill form and as an ear drop. She said, if there’s no improvement in a couple of days, you need to see your specialist and hopefully it’s not perforated again. I was a little taken back by that comment.
She asked how painful my ear was. I explained that pain is a little different in that area. I explained that I either have developed a high pain tolerance in the ear or the nerves are damaged. Don’t get me wrong, I’m a wuss when it comes to pain normally. I said it’s aggravating, but I wouldn’t call it “pain”. Even after my last surgery, while there was pain and I did have to take painkillers, the pain was not the same level as I’ve had with other surgeries. The worst part of the post-op, was the irritated feeling that made me want to tug at my ear. Again, I wouldn’t call it “pain”. Have you ever had a rash that was insanely itchy? I wouldn’t call that feeling “pain” but it’s certainly misery.
Recently, over the past year I’ve started to blow my nose more often. Just these past couple of months, I’ve been unable to go a single day without having to blow my nose at least twice. Just last week, I confessed to my husband that I’m noticing hearing loss and that the nose thing is making me think that I need to see the specialist again. A part of me thinks that I need tubes in my ear and for some reason, this bothers me. I doubt tubes will take away my hearing, but I’m sure the anxiety is trying to hold me back. This is why I tell my husband, so that he can encourage me to do what I need to do. I need to schedule an appointment.
Today, my ear is aching and feels like I’m more deaf than usual. However, it’s the kind of deaf that feels like something is in my ear (which there is ear drops in there and probably fluid build-up). I’m staying home from work and resting. Hopefully things improve and hopefully, we can resolve this increasingly annoying sinus issue.