It's all connected.
I know I am good at writing about my feelings. That’s always been the case with me. Talking about them – not so much, but writing about them always enables me to explore them further in depth. Lately, I’ve had a lot on my mind and plate. It shows at home the most, where I am constantly snapping - my daughter and I have been like snapping turtles lately, but we have gotten better at communicating as politely as possible whenever one of us is getting on the other's nerves. It shows at work - I'm not sleeping very well at night, so I'm dragging ass and daydreaming when I really should be paying attention to other things. It's comparable to what we may recognize as dissociation but 'present' dissociation, if that makes sense. I can't even remember when I was ever this tired - likely when I was working 10-hour days (which will resume in about a month's time). It also shows here - I've been trying to spend the same amount of time here as I always have, but lately, I've found myself taking a few steps back because my mood isn't the best. It's nothing at all to do with the community or the beautiful people who help to make it the absolute best one in the world - it's more me, being in a funk and being overall irritable and not wanting it to spill over.
I’ve been avoiding talking about some things but am arriving at a point where I need to start being a bit more transparent with my family, friends, co-workers, my AS family and even with myself. Just to give an idea, I did not even tell my own mother about what was going on until last week....and this has been happening for months. This is typical of me, anyway - wait until the last minute. 😉
Before I start, let me tell you all not to worry. This is not a life-threatening situation or even a very dangerous one, but has been a lot to have to take in. I didn't know how to explain any of it without giving the back story, so here is the product of several nights' worth of writing.
*** I will issue a trigger warning for some mild language, some references to trauma, but there are no graphic trauma details.
So, many of you know already that I am deaf. (A humorous thing to keep in mind as I type this is my tendency to misspell ‘deaf’ and accidentally type ‘dead.’ I assure you all that I am very much alive, and to disregard any typos that may be scattered in random spots throughout this entry. Autocorrect sometimes likes to switch words here and there, so there’s that.)
My ears, however, ARE dead. They have been since birth, and I’ve never really ‘heard’ the way that an individual with ‘normal’ hearing would be able to hear. Up until I was 21 years old, I functioned with the help of hearing aids – childhood was interesting with those old-school aids that came in the form of electronic boxes that we’d plug a cord into, on the other end, there would be earmolds that I’d have to have made every few months – because they would eventually harden and as my ears grew, the molds would shrink and emit an annoying whistling feedback sound. It was extremely common for my mother to say, ‘you’re whistling.’ This would mean I would have to turn the volume down, or turn the hearing aid off, especially if I was in a setting where the whistling would disturb others, such as in school or at church. When I was about six or seven, I transitioned to the BTE’s (behind the ear) and those, too, required molds, they were just modified hardware and the molds attached to a tube, which attached to the actual hearing aid. No more wires – but still headaches with the whistling and having to have new molds made three times a year, on average. Whenever I had new molds made, this would take care of the feedback issue for a little while. Trips into Manhattan were frequent, and take up a great portion of my childhood memories. I don’t really remember much other than having to deal with deafness-related issues. I got used to it, though, it is what it is, right? What I was hearing wasn’t ‘real hearing.’ It was just sound tones, and it was often muffled. I’m not sure how to explain it, so I’ll stop trying for the moment.
Fast-forward to sometime in 2000 or 2001, a little while after my son was born. We were likely at a maintenance (earwax removal) doctor appointment, where the doctor who had been cleaning my ears out since I was a baby, pulled up a chair and said, ‘you know – there’s something out there called the cochlear implant. I think you would be a marvelous candidate for it.’ He told me, my mother and my husband (at the time) about this device that they’d implant into my auditory canals, and it would enhance my quality of ‘hearing.’ I guess we’ll call it ‘fake hearing’ because to me, that makes the most sense. I’m not hearing things the same way that others hear. I can identify sounds if I can attribute it to something (car horn honking, doorbell, phones ringing) but I first have to make the association so that I know what the sound is. I cannot make heads or tails of speech, unless I’m reading lips. Music to me, is just noise. He said he would be the one to perform the surgery, and he knew my ears like he knew the back of his hand. It would be his honor to do it.
I didn’t want it. I guess I can say that my initial ‘no freaking way’ was based on the fact that it involved surgery, and it wasn’t something I wanted to do…why fix it? It wasn’t broken. It was annoying, yes, but I was functional, I was able to communicate. Getting the cochlear implant wasn’t going to mean I was miraculously going to hear – I’d still be deaf. It was (this was back in 2001) just a new, innovative way of hearing. There is an incision made behind the ear, and electrodes are put in. This is the implant – it’s not a replacement cochlear – (contrary to how it sounds – maybe they should look into this?) – it is simply electronically sending the sound into the brain via these electrodes. It is not classified as a major surgery, but to me, it is. ANYTHING requiring me to be put under via general anesthesia is ‘major.’ It was a lot of information to process and I didn’t want to hear it at the time. I don’t know if it was also the fact that this was something that was going to require a lot of change. Or if it was because I’d dealt with a heavy trauma four or five years before…anything to do with my deafness is a nasty little reminder of the fact that it contributed to my trauma(s). (That’s a different story for a different day, though.)
Still, the pressure came at me from all directions. My son, who was still a baby, was used as a ‘motivator,’ in the sense they would all ask me, ‘don’t you want to hear his first words? Don’t you want to be able to hear him if/when he cries?’ Still, I said no. My hearing aids worked fine – I did hear him cry. I was able to speak and verbally communicate whatever it was I needed or whatever I thought HE needed. I knew I was going to be able to function as I had been.
The decision was put on hold until I had opened the door for a delivery one afternoon. I didn’t know that my son, just over a year old, had followed me to the door and when I closed it, I’d accidentally caught his finger in the screen door. He screamed and wailed and I felt like shit, but his finger was ok…by some miracle, I’d not broken it – it was just bruised and had a little cut from the metal from the screen door. But ultimately, that was the accident (and the guilt I felt) that made me throw my arms up in the air and say, ‘fine, I’ll do it.’ I went through in my head what a terrible mother I was, for not knowing he was right behind me – would this new ‘device’ fix this? Would this prevent future accidents? I know now, realistically, that means nothing, for plenty of Moms out there (with normal hearing, to boot) have closed screen doors on little fingers or toes. Still, it was an ambiguous decision, and not one I made for myself. I made it for my son. I feel it was manipulated, it was coerced. Not by him, of course, but by my mother and my ex. I did say yes, but I felt at this point, that if I didn’t, I wouldn’t hear the end of it and I’d be branded a terrible parent. So, now, I didn’t care if I did it, or I didn’t do it. I didn’t care about the ‘remarkable benefits’ to it. I knew it wasn’t a cure for deafness. All of those ‘remarkable benefits’ were just promises that the doctor wasn’t going to be able to base on personal experience, just science. We all know science doesn’t work the same for everyone. Most of all, I just didn’t want to hear about it anymore. I hated it because it was ALL people wanted me to do. I hated the idea of it, I hated the look of it (because, really, who wants to walk around with a unattractive headpiece attached via magnet???) and I guess most of all, I hated being deaf enough to need it. It was a constant reminder of my being deaf, I guess. And, I guess – my deafness is a trauma trigger, and I’m always going to have a bit of self-hate for that, even though it’s beyond my control.
The pre-op testing took place next. There was a lot to do. Hearing tests to determine which ear the implant would go into. It was decided that my right ear was a better home for it, due to the fact that the right ear had more residual hearing than my left ear. There were vaccines, there were head CTs, blood work, etc. Then, of course, there was the surgery, which took place in 2002. Following surgery was a night in the hospital (insurance wanted me to stay overnight) and then two weeks’ recovery. During that two weeks, I was not to wear hearing aids (even if I wanted to, only my left hearing aid would have worked and my right ear, post-op, would have rendered hearing aids ineffective since residual hearing is essentially destroyed during surgery) while the incision healed. I guess it was a quiet two weeks. The third week was ‘activation week,’ which required another trip into Manhattan to turn it on.
I can’t even describe how awful it sounded in the beginning. It was definitely a ‘new’ way of hearing. I wanted to rip everything out of my head. They performed what is called a ‘mapping’ and adjusted the processor to tolerable levels and told me I would need regular mappings for a little while, at least until I was fully used to it. They would adjust every few weeks to start with. It was explained to me that the brain now has to get used to processing sound – and, so, it was going to be a little dissonant and mysterious in the beginning. It took a few weeks, but then I began to secretly appreciate these remarkable benefits the doctor had talked about. Things began to sound crisp. The level of ‘fake hearing’ had been significantly enhanced. It’s actually comical….I was questioning everything. The hiss of a soda bottle opening for the first time. The rumble of cars driving past. Horns honking, phones ringing, water running, little things like that. I’d ask what it was and would be told, ‘oh, that’s just the air conditioner…’ It WAS amazing at how much I’d been missing. I tucked the magnetic piece underneath my hair so it wasn’t so noticeable – to this day, I do this because I simply don’t like it being visible beyond the external BTE processor that I have to wear in addition to the internal device. The magnet is attached to the processor by short 3-inch cord. The cord blends in with my hair, and the magnet, I tuck under. I secretly felt glad that I had made the decision to get the implant...of course, I'd never admit to it because deep down, I will always remember the pressure that came at me from multiple directions. I didn't want to give any of them the satisfaction of being right - that this WAS a life-changer. It WAS better than hearing aids. The quality of sound WAS improved.
All was going relatively well until 2004. Just under two years after the implant. That’s when the shitstorm hit.
It was a normal day. I’d just come home from picking my son (then four) up from pre-school. I was cleaning up around the house while the kids (my stepdaughter, stepson and my son) did their own thing. We were waiting for my husband to come home. That morning had been normal too, aside from waking up with a sore throat. I dismissed it – wasn’t my first sore throat. I didn’t think much of it and just carried on with my day. I did a lot of that back in the day - I focused on everyone else before I paid any attention to myself.
I suddenly became violently ill that evening. In hindsight, I’m glad it happened at that time of day because had it happened earlier, I might be sitting here. It all happened so fast. My stomach was turning, the nausea was overwhelming. I had the worst headache of my life, I was vomiting. I remember thinking that I needed to at least get dinner started, I tried to push myself, but couldn’t. I think I would have died that night if my stepson hadn’t innocently mentioned to my husband that I was ‘asleep on the floor in the bathroom.’ My husband had called home to ask if he needed to pick up anything from the store, and had gotten my six-year-old special needs stepson. He’d probably asked him to find me (the kids were very used to relaying messages from their Dad at this point) and when Junior told him that, my husband bypassed the store and flew home. He knew something was wrong, and he was right.
When he got home, I’d managed to make it to the couch, and was laying down. The kids were all there, oblivious, scared, anxious. My husband looked at me and proceeded to make two phone calls. One to my mother and one to 911 for an ambulance. By then, my eyes were involuntarily darting from side to side, my vision was blurred, the headache was so bad. My mother arrived at the house and stayed with the kids while my husband followed the ambulance. They took me in immediately and my husband communicated with them and told them that I had the cochlear implant. This, I’m also glad he did – they apparently had a protocol for cochlear implant patients and made sure not to do an MRI. Instead, they did a spinal tap (which was also painful and uncomfortable) and told me that I needed to lay flat on my back for five hours and not move. This, they wrote down on a piece of paper and made me tell them I understood. They then put me into a room by myself, and only came in wearing masks. It would be hours between 'pop-ins' and I would ask them what was wrong with me, what was happening. They would speak to me from behind masks, which was stupid as all hell, coming from medical professionals. You’d think they know that a lip-reader is not also equipped with x-ray vision. They finally left me in there for a long time. They dimmed the lights, thinking it would help the headache and I'd fall asleep, but that wasn't happening. I was in a considerable amount of pain. I couldn't sleep. My mind raced. I moaned and groaned and counted the ceiling tiles until I couldn’t stand it anymore. Determined for answers, I began to holler. Fuss. Anything that would get someone’s attention. I eventually screamed (from a lying-down position) that I needed to know what the hell was going on. The nurse finally came in, wearing a mask. I asked her to please tell me what was going on. She put up a finger (I don’t know if the light bulb went off here, but either way, she finally understood that I wasn’t hearing anything) and signaled she’d be right back. She returned with a piece of paper and showed me what she’d written on it.
“You have meningitis.”
I shut up. The nurse wrote some more onto the paper and showed it to me.
“Very contagious. Sorry, we need the masks for our protection. We started the antibiotics right after the spinal tap and will move you to your room soon. Please try to rest and continue to lay still.”
Meningitis? The word played over and over in my head. I’d heard of it. I’d heard it was sometimes the reason someone went deaf in childhood. But I didn't know much else about it.
How the hell had I gotten meningitis? I’d known there was a risk involved among cochlear implant recipients, and I’d gotten vaccinated prior to surgery….so why was I dealing with this, now? Did it not work? Was I immune to the vaccine? They array of thoughts going through my head during that time was overwhelming and I just told myself to focus on getting better so that I could go home to my family. That, I guess, is where my brush-off skills were improved. I didn't think about it, so I didn't have to talk about it. I'd done this before - for different reasons, of course, but this probably worked the same way.
I spent a total of five days in the hospital. They sent me home with a PICC line that served as a way to administer antibiotics for the next two weeks. During this time, it was theorized that the meningitis was contracted because of the usage of a spacer during the cochlear implant surgery. This was basically a small piece of hardware inserted to further secure the electrodes into the cochlear. This created a pocket – and the strep throat that started the infection that conveniently found that pocket. From there, it had quickly escalated into meningitis. Another hour or two left untreated would have probably ended me. My stepson, nearly 27 now – is probably the reason I survived.
It took me several weeks to finally read up on the illness and its long-term effects. There was so much that I didn't know about meningitis in general, including the long-term effects on meningitis survivors beyond the most commonly known about - hearing loss. Meningitis survivors also report personality changes, emotional changes that are sometimes day-to-day, memory and concentration struggles, reduced IQ, loneliness, feelings of isolation, headaches. I can say I have experienced most, if not all of these. Some of these, I STILL experience. Hell, I was already isolated BEFORE getting sick. Returning to reality after this ordeal was not easy. There was depression, there was more of a tendency to withdraw, to retract. It took a long while to feel like myself. Some fact sites referencing meningitis also classify it as a traumatic experience. Reading about all of this only made me angrier, so I eventually stopped.
Shortly after recovery from meningitis, the surgeon who implanted me called and said he wanted to remove the spacer and re-implant me with a new device. I was not keen on having a second surgery, especially not so soon after the first one. The surgeon also said that the second surgery was considered corrective, so it wouldn’t cost me anything. I didn’t want to have to deal with meningitis again, and as long as that spacer was housed in my auditory canals, the risk remained. Again, I threw up my arms. Sure, why not? Let's go back in and fucking fix the mess you all convinced me to make of my life.
The second surgery was done in February of 2004. It went smoothly. I spent another night in the hospital. The activation wasn’t as bad this time around that I’d become accustomed to ‘the bionic ear.’ The recovery required the same silent two weeks. At the time, I was not working. I was just home with the kids, and had my mother fifteen to twenty minutes away to help with the kids while I recovered. This was nineteen years ago.
Now, we fast forward to the present day. By now, I'd divorced my husband, but not before having a little girl in 2006. I met my wife in 2009 and we were joined in marriage last year. We had moved out of the state in 2017, I'd gone back to school in 2019, gotten my BSW degree, got a job. I did all of the things I really, in hindsight, should have done a lot sooner. Won't dwell on this now, for it changes nothing - just mentioning it to give an idea of how different life is now vs. how it was when I was a young housewife and mother. But anyway - it is a given that I am in a different place now than I was twenty years ago. Many transitions have been made, and things have happened to bring me back to the same mental place I was years ago...a place that I had worked hard to climb out of.
For the last several months, I have been experiencing some serious battery drainage. I’m eligible for a hardware replacement (outside processor/equipment) every five years. I’ve had three processor upgrades since 2004. The last upgrade was last year, in 2022. Everything was working fine. A cochlear implant battery is supposed to last 10-15 hours on a full charge. I noticed back in April/May that the battery was lasting less than half of that amount of hours. I was finding that I’d have to carry one or two spare batteries with me to work, because it would be drained before I finished with my first client. I thought it was an issue with the batteries themselves, and when they continued to rapidly drain, I opened up the two spare batteries I had (I’m eligible for two additional batteries per year and had these two still in the plastic wrappers they came in) and charged them up. When I discovered that these brand-new batteries also only lasted me barely two and a half hours, I contacted my new audiologist and let her know that something was amiss with everything.
She said it could be a potential problem with the hardware, and that she would send a new pre-programmed one to me. All I had to do was pop a battery in, change the wiring and put it on.
OK – easy enough.
The replacement processor came the day after. I put a fresh battery in, put it on and crossed my fingers. Sadly, the warning beeps (when it’s low) came on after two hours. Additionally, the sound was cutting in and out, and eventually, nothing was coming through the processor they’d sent. Exasperated, I returned it to the box it arrived in, and went back to the processor I’d been using. After a day or two, the sound began to cut in and out on the processor I’d been using – which was frustrating, because until I’d tried the replacement one, this was not happening. Additionally, battery drainage was still a huge problem. I emailed the audiologist back and let her know. I did apologize for blowing up her email on a weekend. I also told her that I didn’t care that it would take me two hours to travel to where they were – I would move mountains to get this shit working again. I told her how frustrating it was, and how I couldn’t function with sound cutting in and out – especially in the profession I’m in. I work with children – so being able to hear them and understand them and their teachers is important. She got me an appointment for last Friday, and told me to bring all of my equipment, both new and old, and she’d run diagnostics on everything.
I went to see her this past Friday. The daughter accompanied me – (she’s seventeen so I have had this implant for her entire life) and we traveled the two hours there and met with the audiologist. She hooked my hardware up to her equipment, pulled up my map program onto her computer and started to talk. She turned the computer screen so I could see what was happening while she spoke. When sound was going through…the arrows would dance up and down. When it cut out, all would drop to the bottom of the screen at the same time. She saw exactly what I was hearing. It was intermittent, and at this point, happening very often, and mostly whenever I changed batteries, which by now is six, seven times a day.
She finally turned the screen back around and gently spoke.
“Okay. I think we have what we need to diagnose a potential internal failure.”
“You think it’s the inside piece?” I asked. My daughter became VERY interested at this point. She sat up straight and paid attention.
The audiologist said that all the evidence was there. The battery drainage regardless of battery age. The intermittency. Even the headaches I’ve been having. The inconsistency of delivery of sound. She tested all of my external hardware and found no problems with any of it. This left the internal piece, which being 20 years old, always had the very slight possibility of malfunctioning.
“I do have some good news, though,” She said. “I see you were last implanted in 2004. Your current implant is under warranty for twenty years, so you’re still covered for revision surgery. In February of next year, that warranty expires.”
“So that’s your recommendation?” At this point, I’m trying to see the silver lining in all this – I really am. Not having to pay out of pocket for this surgery definitely was a good thing. But...fuck. Surgery. It's a scary word, a hard word to chew on.
“It would be completely covered,” she said, again. “But yes, it IS my recommendation. For now, though, I am going to tweak your map settings, though, to a manual frequency. This will help the intermittency. It will enable the processor to not work as hard – sound qauality might be a little different, but you’ll still have sound awareness. It will not stop the device from ultimately failing but it will help hold you over until we can get the surgery scheduled.”
So, basically, a band-aid technique has been applied. There is no cutting in and out of sound – it’s constant. The batteries are STILL draining at a rapid rate. I am having to bring three to four batteries with me to work every day – my pockets are full of keys and batteries. When I get home, I have to charge up the dead ones – out of the five batteries I’m cycling through, this sometimes means that I’m without any while three of them charge, as the charging port only holds three. I am concerned about having to return to full-time (10 hours a day) at the end of this month (school starts on August 28) and having to constantly change batteries or even bring my charger into the classroom with me. I expressed to her that the need for this to be fixed was emergent.
The audiologist then said she would be contacting their surgeon immediately (my surgeon has since retired) and that she’d be reaching out soon to do a telehealth visit to discuss next steps.
So, this is where I’m at right now. The audiologist had given me a reassuring pat on the hand and said, ‘third time’s the charm.’ Then she proceeded to tell me that there have been many advancements to the cochlear implant since 2004. She promises that the updated model is MRI-compatible (meaning I can have an MRI if needed and it won’t kill me) and that the sound quality may also be improved. The newer models are also made to last longer, so this would likely be my last implant.
The Oompa had asked to be present via FaceTime, and asked the audiologist if a hearing aid could be loaned to me while I recovered, for the other ear. The audiologist explained to my mother that the last hearing test I’d had yielded 0% residual hearing in my left (non-implanted) ear. I’m sure she said more but I was unable to process it all at the time.
I’m STILL trying to process it all. A lot to think about, even though I know the decision to have the surgery is a necessary one. The timing sucks. Not that timing is ever good...
After all is said and done, it’ll be three times I’ll have had this surgery. Two times too many. I’m, by now, the worst person in the world to advocate for cochlear implants. My mother, bless her heart, because it’s truly a good heart and she means well – will always tell me that I should convince other deaf people to get the cochlear implant because look at how differently and how much better I’m hearing with it. Alas, I’m still likely to turn around and say, ‘run as far away from it as you fucking can, and embrace your deafness!’ than I am to say, ‘it’s the best thing that’s ever happened to me.’ While it has significantly improved my functionality in a world where the majority of individuals have working ears, it will always, ALWAYS be a sour subject. Because of my trauma history, because of the meningitis, because this, like many other times in my life, represents pressure, loss of control, and me doing what other people want me to do, regardless of what I felt. I can’t look at another person with a cochlear implant without hating it, or hating my own even more, despite its obvious benefits. And then hating myself for my own bitterness. I mean, how much sense does that even make?
There’s that two, three maximum weeks’ recovery time. I’ll have to wipe out my paid time off, whatever I have banked will have to be used. I’m supposed to return to my full time status/10 hour workdays on the 28th of this month. Right now, my work schedule is light. I can schedule pre-op stuff around my work schedule. But now I have to wait for the surgeon to first schedule a telehealth appointment to discuss the ‘next steps.’ After a day’s worth of email tag with her nurse this week, I have an appointment scheduled for a head CT on Monday – because apparently, the next step wasn’t the telehealth call – it was the imaging she wanted BEFORE she’d schedule the telehealth call. Oh, and it gets better – she wants a disc of the images sent to her office. Her nurse mentioned casually that she’s on vacation this coming week…meaning she won’t get to see anything until the following Monday, the earliest when she returns. Meanwhile, time is going by and I feel like everything is moving way too slowly. I’m currently walking around with four batteries in my pockets (left pocket is charged, right pocket is dead) praying that I get home before they’re all out of juice. This will be much easier to do in the summer because NO WAY is this going to be possible during my full-time hours.
Where there’s surgery, there’s going to be bloodwork, and even worse - needles. I can barely wrap my head around having to deal with the surgery and recovery, and am having to accept that in order to put in the anesthesia, they will have to put in an IV prior to surgery. I am going to speak to the surgeon beforehand about seeing if I could possibly be sedated before they put in the IV…don’t know how possible that is going to be but it's going to be nothing short of hellish if they can’t. I CANNOT do blood draws from the inner elbow calmly. It is possible to get an IV in me, but I literally am panicking from start to finish, and it would just be easier on us all if they sedated me before trying to poke around for defiant veins.
Prior to the FIRST implant in 2002, they told me my left ear had some residual hearing left. It was also a candidate for implantation – they just wanted to do the better one, which was the right side. I never even considered dual implants (some people do have two, and do both sides) and I never really wanted to go through the fuss of wearing a hearing aid in the left ear but knowing it was an option was oddly comforting. But to hear the audiologist say that the hearing in that ear was completely gone….makes me wonder - did the meningitis, which is known to cause permanent hearing loss, destroy that ear, too? My last ‘in the booth’ hearing test was a year ago and they based that statement on those findings.
So…this is what has been going on in my world lately. All this, along with the surfacing of pre-existing feelings of self-inadequacy and hatred that I’d managed to keep at bay for years. This news of a failing implant has made some of these feelings re-emerge, because again – my being deaf has caused a problem.
I find myself occasionally feeling angry at my mother for no good reason other than for having two other daughters who don't have a stinking thing wrong with their hearing. They're perfect. I was just the one she had to fix because I came out with something not working. She thinks she knows everything about my hearing and what I'm going through when she, in fact, doesn't have a clue. I'm angry at my ex for all of the pressure and manipulation he took part in. I'm angry at the original surgeon, at whoever even thought to invent these things. I also hate to admit it, but there's this ridiculous, unfounded anger (that I will also admit that I know deep down is misdirected) toward other deaf individuals - because they seem to possess a level of acceptance, (even happiness) with their hearing loss than I ever could imagine having. I can count the number of deaf friends I have on a single hand. This is because I never fit in with them in a peer sense. I could not sign, I couldn't maintain an advanced conversation with them, and I ALWAYS was the odd (wo)man out whenever there was a group of us. In the sense that we had zero function of our ears, I certainly could relate but because I was brought up and conditioned to be functional in a hearing world, I had zero appreciation for deaf culture. There IS a culture. You see - they have a certain contentedness with it. Some love it. Some don't even wear hearing aids. Some are 100% against the idea of a cochlear implant, so I'm sure that has changed many deaf people's view of me. Most have accepted their hearing loss with grace, and don't see it as a disability, or even something that is broken - they see it, rather, as a culture. They have their language, they don't need anything else. They're perfectly happy as they are, and embrace many things I cannot. Perhaps there's a bit of envy there, too.
And then, there's me. I don't even FEEL like I'm deaf at times. I don't even tell people when meeting them for the first time unless they ask. I have gotten better with explaining myself online but that's easier to do than it is for me to tell someone that they have to make sure I can read their lips in order to converse with me. I also loathe doing that. My mannerisms and my speech have a lot of people fooled as is, so it's not even really a conversation I have with people. But lately, all the sound cutting out and the batteries dying at random moments and my asking people to repeat themselves several times has been a cruel reminder of the fact that I am deaf.
I will never fit in either category - deaf or hearing. I will always be stuck in the middle, somewhere. I will always feel that deafness, or anything having to do with my lack of hearing, is what also made me vulnerable to trauma, whether it's sexual trauma or medical trauma. It's all connected, and it ALWAYS comes back to that. And so, I'm currently trying to combat these nonsensical bouts of anger by internalizing and throwing myself in front of a baseball game (which has grown increasingly annoying because the Mets are pitiful this year) or a video game. I've been distancing myself from people, at home, at work, online. I'm sure it's all a phase that will pass upon recovery of my latest surgery. I'm HOPING it will. I don't like myself when I'm like this, and even though I know it's understandable and that past trauma factors into it, I know that it's also senseless to remain angry about something I can't change.
Anyway. It's late, and I kind of want to post this before I decide to delete it all. Like with other blogs, I sometimes have thoughts after posting, but I suppose I can always type in an addendum later if something pops up. I just needed to do a mental upload, maybe free up some headspace.
If you've made it this far, thank you. I know that this mess was a lot to read. ❤️ I will keep everyone updated as best as I can and let you all know what the timeline is.
In closing, I'll also say that I do know that this hasn't defeated me. It took me a while to come to the understanding that the sexual trauma was human-inflicted, and what happened to me could have (and definitely has) happened to someone with two perfectly good ears. Simply put, a predator will find a way to hurt someone. They've done it before, they'll do it again. The choice to harm someone else was one they made. I know that this 'vulnerability' of mine has shown up at every turn, and I know that I will once again arrive at that place where I can say those bolded sentences and believe them. Right now, it just feels like the figurative 'tray' I've been carrying all of this on for the past few decades, arranged all neat and tidy, has just been smacked upwards from the bottom and everything is now in the wrong place and thoughts are in mid-air, jumbled, out of order, on the floor, stuck to the walls, and thus not sitting well.
It will all get better, I know this, too.
It just sucks right now.
- Cap
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