Hey guys! I’m back! I apologize for the lack of updates lately. I have been meaning to make this post for a couple of weeks but I’ve been crazy busy with writing my book, God Granted Me Hearing (which yes, is based on this blog and my cochlear implant experience!) :). Also, I haven’t had a whole lot of news lately. My 2nd cochlear implant has been progressing well. I saw Alyssa at Jefferson around a month ago and everything was good but she didn’t test me again so there’s no update on that end.
I do have something else to share with you all today though — what it’s like to get caught in the rain with a cochlear implant. I’ve written in the past about how getting caught in the rain was one of the things I was most looking forward to doing after getting my cochlear implant and I also wrote about what it was like to go swimming with a cochlear implant, but up until a few weeks ago, I never actually seriously got caught in the rain with a cochlear implant.
First let me say this was completely UNPLANNED. I live in Washington Township and I love to take walks. I knew that a thunder storm was on the horizon, but when I first headed out for the day the skies were still clear. It was one of the first days of spring so for once the weather was warm. I didn’t want to walk to the gym like I normally do because I thought it might be too far of a walk and I wasn’t sure if I’d make it back in time to avoid the storm. Instead I decided to take advantage of the fact that all of the basketball courts at the high school I live across were empty. I’ve always loved to play basketball but I don’t get the opportunity to play nearly as much as I’d like. So I grabbed my bag with a couple of bottles of water, my jump rope (don’t ask…), my basketball, and headed out.
I wore my aqua cases for this trip. I didn’t wear the aqua cases just because of the pending storm, but to protect against sweat as well. I made the mistake when I got my first cochlear implant of going to the gym without the aqua case and almost broke it from all of the sweat and moisture I got in it. Ever since that incident I’ve made a point to wear my aqua cases every time I go to the gym, work out, or even go for a walk or do anything that could produce a sweat. I’d rather be safe than sorry.
It took me awhile to cross the street that afternoon. Traffic was busy in Washington Township, as always. When I finally managed to cross the street and make it to the highs school I took out my jump rope and began using it. I’ve had my jump rope for over a year and never used it before. I heard it was good exercise which is precisely why I bought it, but I always shied away from using it fearing I’d look like an idiot, which I totally did, but it was okay because no one was around to laugh at me. I still didn’t have quite enough magnets in my headpiece on the cochlear for my right ear. I think the placement for that one is different than on my left which makes it not stick as well. When I used my jumprope it kept knocking my headpiece off until finally I gave up on it and took it off and put it in my bag.
I only jumped rope for about 5 minutes or so before switching to basketball. I know it doesn’t sound like a lot, but when you haven’t done it for 20 years, jumping rope is really intense! Plus I noticed the clouds were beginning to look a bit heavy so I wanted to stop and make sure I got plenty of basketball time in before it rained on my parade. I put my cochlear back on for this. It works out better for me than the jump roping did, but it still kept coming off my head whenever I jumped so I ended up taking it off again and putting it in my bag.
I played basketball for about a half hour or so before the rain began. I think this was my first time playing basketball with my cochlear implants. I noticed I was much more relaxed. I didn’t have to worry as much about whether or not any cars were coming by the parking lot or if there were joggers running through or someone trying to talk to me. I was able to hear everything around me (and also there wasn’t many people around anyway). It was very peaceful and fun.
After about a half hour I felt a raindrop hit my head. “Okay, that’s my signal to pack it up”, I said to myself. Within seconds of saying that, I found myself in a torrential downpour. The rain came down at the speed of light. I ran to my bag to check my cochlear and put it back on my head and to check that my phone, which was in my bag, was still working. Everything seemed good. Then I grabbed my bag, my ball, and headed on home.
But I couldn’t simply go home; I had to walk back which meant walking through the torrential downpour and trying to cross the dreaded intersection again. It also meant having to pass a bank and drug store while sporting soaking wet clothes and hair and dribbling a basketball. That’s not something you see everyday…
IT. WAS. FUN. SOOOOO MUCH FUN.
This is something I could never do before with my hearing aids. My hearing aids would have broken in seconds and I would’ve been having a major panic/anxiety account over getting caught in a torrential downpour with them. And my mother would want to kill me for destroying my $3,000+ uninsured devices.
But with my aqua cases on, my cochlear implants were 100% waterproof. I had nothing at all to worry about.
I dribbled my ball through the rain until it began to fill with the water and become too heavy to bounce. Then I carried it. I watched the people flee the bank to their cars as if they were afraid the rain might make them melt. As I waited at the crosswalk by the drug store I noticed the people in their cars looked at me like I was some kind of a freak because I was standing at a crosswalk for a busy intersection with soaking wet hair and clothes, a basketball, and the biggest smile on my face.
I didn’t care about being wet. I didn’t care that my clothes felt like they weighed 1,000 pounds from the rain. I didn’t care about my basketball session being cut short. I didn’t care about the fact that I was getting pretty cold. I didn’t even care about the fact that my contacts were getting blurry from being drenched in rain.
I was ecstatic. I was having one of the best days of my life.
When I got home I didn’t have to worry about anything being broken. I did take my cochlears off and put the aqua case parts and those specific batteries in the dryer just to be on the safe side, but I didn’t really have to. There was no panic attack. I didn’t have to take out the hair dryer to try to air them out and to get them to work or nothing at all.
I simply did what any normal person would do…I changed out of my wet clothes, got a hot bath and made a hot cup of coffee to warm up, and went on with my life.
You don’t realize how much these little things in life like getting caught in the rain can really mean to a person until they get to not just experience them, but ENJOY them without any kind of fear at all, for the first time ever. It’s surreal.
Getting caught in the rain with my cochlear implants may not have been everything I hoped it would be. Larry and I have been broken up for over 6 months now. There’s no one new in my life to give me that Notebook-style kiss in the rain. I didn’t even have anyone there to have a conversation with or to go puddle jumping with.
But you know what? It wasn’t what I wanted it to be because it was BETTER.
It was all my joy for the taking. It was all on me. It was all about me, having my moment. I didn’t need anyone else to be there for me. I just needed that rain and to be off in my own little world.
It was one of the best days of 2016 thus far.
I can’t wait to get caught in the rain again sometime soon.
Before I get started on this blog post I just want to acknowledge that this is not going to be a popular post or a topic many people want to hear about. Most people, especially those who do not have cochlear implants, only want to hear about how amazing and life-changing they are. Make no mistakes, getting both of my cochlear implants was the best decision I ever made. I have absolutely no regrets. But at the same time that doesn’t mean this has been a fun and easy process where every single day is all peachy. Sometimes it is really really really hard, frustrating, scary, and overwhelming. Sometimes your cochlear implants can even make you feel quite depressed. That’s exactly what happened to me after my hearing appointment at Jefferson on Thursday.
Thursday’s hearing appointment was my 2nd appointment since going bilateral and my first post-activation appointment. I was going for my 2nd mapping and to have some adjustments made. I told Alyssa, the resident in training audiologist whom I’ve been seeing for a few months now, that I thought I wanted more volume in my new processor, so she had me go through and listen to all of the sounds at varying levels again. She made some adjustments based on my responses. She checked my initial processor for my left ear as well since it’s been I few months since we did it. She actually ended up turning the volume down on that one.
After adjusting the volume Alyssa asked me how I liked my current programs and which new programs I wanted. This was a pretty long process since I am only of the only bilateral patients at Jefferson with the new Q90 processors. Some of their patients have them, but it’s very rare to have 2 of those processors now since they aren’t widely available yet. She had to get the audiologist, Louisa, for help a few times since they haven’t made these programs before. I had her program me with the following programs:
- Everyday w/Auto Ultra Zoom
- Everyday w/Duophone/No Auto Ultra Zoom
- Background Noise
I haven’t had to use the program for the background noise yet since I haven’t been in that loud of an environment yet. I did use the duophone once during a client call on Friday but it didn’t seem all that different to me yet. Maybe because I still need to work more to train my new implant. I will try the Aquacase on Monday when I go to the gym. It will be my first time using 2 Aquacases at the gym so I’m pretty excited to see how it compares to wearing just the 1.
Once we got all of the programs squared away it was time for my least favorite activity: a hearing test. She had me take off my left cochlear implant so we could just focus on my new, right ear.
First Alyssa tested me with just the beeps. I did very well with those. She didn’t write down the percentage and I don’t have my audiogram with me to look at it right now, but I know I scored right around the normal range with that which is great considering I’ve only been activated for a month. It was a good start.
Unfortunately, the test seemed to go downhill from there. After that we moved on to sentences. Alyssa played recordings and I had to repeat them back. I could pick out a couple of the words, but I missed a majority of the sentence. After doing some sentences we moved on to just words where I did even worst.
Being in that extremely small room and not being able to understand what was being said through the speakers gave me such extreme anxiety. It always does, but it’s the worst when you’re unsure of yourself and it heightens when you keep getting the words wrong. The more you miss them, the more anxious you become and then you simply get depressed. Hearing tests can be the absolute worst when you’re deaf or hard of hearing and it’s hard to really describe or have someone relate to that feeling unless they’ve experienced it.
The absolute worst part of the test though was what followed. After going through all of the sentences and words Alyssa instructed me to remove my right cochlear implant (while still keeping the left one off) and she tested me for the beeps again. I got maybe 2 pitches right when they were at EXTREMELY high volumes and that was only because I could feel the vibrations through the headphones. If it weren’t for the vibrations, I would’ve missed those as well.
I have no residual hearing left in my right ear. I knew that was a risk when I got implanted and I was more than willing to take that risk. However, I still expected to retain my residual hearing since I did with my first implant. The hearing I have now is far greater than what my residual hearing was (I only had about 7%, probably a bit less of residual hearing), but it was still hard to hear (no pun intended). Without my cochlear implant in that ear, there’s nothing there.
Alyssa calculated my word recognition to be 34%. She said she was happy with my progress and that I was right where I should be for being activated for only a month. However, all I saw was a 34%, which to me meant failing my test big time (think of it this way — when you’re in school and earn a 34 on your math test you’re probably less than thrilled…). I felt really depressed after that test and spent the rest of the day sulking and feeling sorry for myself.
My cochlear implant is a blessing and having 34% is a HUGE improvement for where I was, make no mistake. My mom and many other people in my life yelled at me for being so miserable and for being so hard on myself. But it’s hard to make someone understand who’s never been through it. Yes, I know I’m right on track and I’m doing well blahblahblah, but it doesn’t always feel that way. It is frustrating to know you’re not hearing the right way. I have the volume in that ear but I don’t understand sounds very well yet. I can’t always make out words or sentences. I’m not on the same level with my left ear yet. I know it takes time, but it is so easy to become impatient.
I also feel a huge sense of pressure and like I have high expectations that need to be met. I myself set the bar high and have high expectations for myself. I know how well I’ve been doing with my left ear and I keep comparing everything to that ear now. When I received my first cochlear implant there was nothing to compare it to so everything felt amazing. It’s hard now that I know what to expect. It’s hard to remember that this is going to take time, especially because I expected things to be so much easier with my 2nd implant (which does not seem to be the case).
There’s also the issue with the people who never received cochlear implants and don’t understand how they work…which is pretty much everyone in my life. Everyone asks me about it constantly and “Can you hear me now” or “Wow, I bet you can hear really great now”, but that’s not always a yes…or at least not yet. Actually without the help of my left ear, a lot of things sound really weird with the right one now. Things still sound robotic. I still can’t understand a lot of spoken words. I might be able to hear you, but I probably don’t understand you as well as I want to. Trying to explain this to people is hard. There’s a lot of people that don’t understand and when you try to explain it they think “Oh, so it’s not working?’ No, that’s not right either. It is working, it just takes time. But it’s hard to explain it to someone who doesn’t understand and it gets depressing because it’s like a reminder that you’re not quite where you want to be with it. And you feel like you’re letting everyone around you down who thought you’d be able to hear and understand everything well right away. And then you feel like you’re letting yourself down, too, because you’re not where you want to be with it, either.
I really wished on Thursday that I had a bilateral (or even just plain deaf/HOH) friend to talk to. I mean I do have some that I met from the support group meetings, but they are all significantly older than me. I wished I had someone my own age, someone with a similar story, to confide in and to lean on for support. Because I think that’s the only kind of person that would have understood why I was upset and exactly what I was going through. I know these people are out there — just haven’t had luck actually meeting any yet lol.
The cochlear implant journey is not easy and it’s not a straight-forward path to success. It’s a rocky mountain climb and sometimes you fall down the mountain and end up in the slumps feeling depressed by the whole thing. But with hard work and practice, you will eventually make it to the top when you are ready.
I spent all of Thursday sulking. Then on Friday night I went back to practicing words with my mom and I got most of them right and I felt a lot better. I’m hoping to squeeze in some time to play with Angel Sound and listen to some sermons with just my one processor on to further help to train it. One thing that I forgot on Thursday that my mom reminded me of was that I didn’t get tested for words on my 2nd mapping with my first cochlear implant — I didn’t do that until 4 months after activated at which point I got a 68%. When you think of it in that light my 34% at the 1 month mark doesn’t sound bad at all. I really shouldn’t have been tested so soon for word recognition. But Alyssa didn’t know better I guess. But it’s only been 1 month and I’m already halfway where I was in 4 months with the first one. I’m not doing as bad as I think.
I’m not about to give up. I’m going to keep working until I end up where I want to be. This is a long process, and it won’t always be easy, but I know it will be more than worth it.
Hey guys I apologize for the lack of updates. Been a bit crazy over here lately since my surgery, but I’m finally starting to get back into the swing of things today.
I had the surgery for my second cochlear implant for my right ear on November 30th. The procedure was almost identical to how it was with my first one with just a few minor differences. I had to be there a bit earlier for one. I had to be there at 6 in the morning which meant leaving my house by 5. I was pretty tired since I stayed up late that night watching what turned out to be an incredibly disappointing Patriots’ game. After the game I couldn’t fall asleep because I was way too excited.
My mom and I barely slept at all the night before… we were both too excited!
I got to the hospital at 6am on the dot and everything moved very quickly at that point. I had some paperwork to fill out/sign and was taking back to the Emergency room fairly quickly where I changed into my gown and had to answer a series of questions. All of the questions were identical to the ones they asked last year and the answers were the same. I had to give them a urine sample and then they fitted me with my IV. I can never just simply get an IV though. You may remember from my first surgery they had trouble finding my veins and I had to have multiple people try to stick me. They got it in on the first try this time, but might’ve gotten a little too close to the vein. I bled all over the place. For the next two days after the procedure I was trying to clean up dried blood from my IV. I swear I think I bled more from the stupid IV than I did from my actual procedure…
I was really, really excited!
Dr. Willcox’s surgical team and all of the nurses and everyone involved introduced themselves to me and explained what they would be doing. They didn’t need to go into as great of detail as they did last year though since I already knew what they were going to do and I saw many familiar faces. Some of them remembered me, too and were very excited to see me which made everything all the more exciting. I really liked Dr. Willcox’s assistant/the guy who was doing his residency with him. He had a great smile and was pretty attractive. My parents laughed at me when I told them this and said that I “must’ve been pretty high from the drugs they gave me” since he was apparently a lot older than me and “Not that good looking” haha.
I feel like I fell asleep much quicker this time around than I did last time. I don’t have much of a memory of everything before the surgery because I just feel like they put me on the table and I went to sleep. Which makes a lot of sense since I really didn’t get any sleep the night before so I quite tired. I feel like there was less machines hooked up to me, but that could just be because I was asleep and didn’t notice them. I had my cochlear on until I fell asleep at which point Dr. Willcox removed it until after the procedure which made things much better for me. Since I could hear I was able to relax a lot more and they didn’t have to keep telling me to lay down because I wasn’t all anxious to see what they were doing like I was with the first surgery lol.
They took me in for the procedure at 7am and I was back in the recovery room around 11am. I think I woke up around 11:30-12. I was very sleepy and struggled to stay awake. They kept telling me they were waiting to take me back to another room. I asked for my parents and they said they’d bring them up but that they knew I was done and that everything went well.
I felt much better after my surgery aside from being tired compared to how I felt after the first procedure. I didn’t have a sore throat, probably because they used a smaller breathing tube after hearing how I had a sore throat the first time around from the larger breathing tube. I also only felt slightly nauseous and dizzy. I did feel a bit of pain though. At first they only gave me a little bit of pain medicine. They gave me more after making me eat the worst-tasting saltine crackers in the world (seriously why do the crackers at the hospital always taste so bad? That thing was straight up cardboard…staler than stale…yuck!)
After successfully eat the sucky crackers, walking a bit on my own, and having the IV removed (which meant more blood all over the place), I was permitted to change back into my clothes and go home. I’d say I was home around 4 or 5pm. The whole procedure and everything didn’t take long at all.
A Post-Op selfie!
Overall I felt much better and had an easier recovery the second time around. I think the fact that I had 1 cochlear and could hear made things much easier, too. I could watch movies which was a great way to relax.
I did have a set back on the 2nd day post-op though. I had to go back to Jefferson to upgrade my processor from the Naida Q70 to the Naida Q90. It was the last thing I felt like doing and my family and I didn’t think it was a good idea at all to go all the way to Philly 2 days affter surgery, but Advanced Bionics was going to be there since it was an early upgrade limited to very few people (I was one of the lucky chosen ones) and it was the only day I could go and do this, so I didn’t have much of a choice in the manner.
I did okay at first. I was dizzy, so I held my mom’s hand a lot. We took the car rather than the bus because we thought it would be easier/more comfortable for us. I did get pretty tired and didn’t want to be there, but I tried to make the most of it. The Q90 looks and works almost identically to the Q70. It is a little smaller and feels lighter though which I like. One of the biggest differences with it is that the programs are almost all automatic (the exceptions being sound relax and the aqua mic) which I like the idea of. Changing programs can be really annoying. I haven’t been in an environment too much yet where I can really see how it works, but my mom did vacuum and I noticed it blocked out the noise a bit (although I could still here it) and I could carry on a conversation and still listen to music and hear everything with it on which was cool. When the programs switch I can hear it switch over, too. I am excited to go to a crowded, noisy restaurant or something so I can really see how it works. Also, once the other ear is activated I’ll be able to unlock many more features that will allow both ears to work together which will be awesome.
Louisa, the woman from Advanced Bionics (I forget what she said her name was) and Dr. Willcox (we saw him in the hallway) all said I looked great considering I was just 2 days out of surgery. By the end of the appointment I started to get weathered and worn out and very sleepy though. It was an important appointment, but very stupid to go out and do that much so soon after surgery…
I felt okay afterwards, but very tired so I took a nap shortly after getting home. It wasn’t until after dinner when I started to get into trouble. After dinner when I stood up to throw my trash away I suddenly got very lightheaded and everything started to go completely black. I immediately sat back down and had my parents give me a drink of Coke. I took my blood pressure and it was only about 55 for a top number! To give you an idea of how scary this was — it was about the same range as my grandmother’s blood pressure right before she died. My parents were scared of course but we were nervous about calling an ambulance and going to the nearest ER since that for me is Kennedy in South Jersey. Most South Jersey hospitals are awful, and that one is definitely one of the worst. We were afraid to go there and have them mess up Dr. Willcox’s work, so we decided to wait it out and just keep monitoring my BP. I drank more soda and high-sodium energy drinks and put my head down for a bit. We did get my BP back in the 100-range which put me out of the woods, thank the Lord!
After that episode I took it easy for awhile barely doing much of anything besides sleeping, watching movies, coloring, and reading. I wanted to go back to work, working from home, that Thursday but decided it was best to just rest up so I took off for the rest of the week.
By last Saturday I was beginning to get a bit depressed. I felt useless. I wanted to go outside and do things and interact with people, but I knew I had to recover, especially after the whole BP issue. My depression was much better than it was after my first implant though, probably because I could at least hear this time around since I had one cochlear already.
I went back to working from home on Monday. It was a busy day back but it felt so good to be back in the swing of things. I did pretty well being back to work. I just got tired after lunch from my pain medicine and antibiotics, but I took a nap after work and I was fine.
I had my stitches removed on Wednesday. I was supposed to get them out on Thursday with Dr. Pelosi, but my surgeon decided to come in and do it on his day off instead because he really wanted to see me. My BP was a little low at 94. They don’t believe it was due to the surgery, but rather that I have been too relaxed. Dr. Willcox told me to be more active and that should help. I have been more sedentary than normal because I was afraid I was doing too much. Figures haha. I’m anxious to get back to the gym and taking long walks and doing more though! Getting the stitches out hurt more this time than I remembered from last time, especially the areas with the knots. There was one stitch that got my hair caught in it and that one really hurt to have taken out. I was glad to get them removed though!
I had a few stitches…
Once my stitches were removed I met with Louisa’s assistant who’s completing her residency, Alyssa, to test the equipment and to make sure the electrodes all worked. It was just like last year. I was able to hear all of the beeps which seemed like a good sign. They seemed louder this time around, too. It was pretty exciting. I got to see my new silver processor, too. It looks really cool! I can’t wait for my activation so I can actually take it home and wear it!
Thinking of my activation, there’s a chance that we may be moving the date up a bit. I have it scheduled with Paula on the 24th (Christmas Eve) but Alyssa will be there on the 23rd so we’re trying to move it up to that date. The only thing is that Alyssa doesn’t have her license yet and isn’t normally allowed to do activations on her own. But my mom and I don’t have a problem with it at all. Honestly, I like Alyssa better than Paula and Louisa. I do like both Paula and Louisa, but Alyssa has a great personality, is very professional, and seems to really know what she is doing. Even though she isn’t licensed yet, I trust her and I know she’s helped with activations and knows what to do. They said they’d have to ask the board of directors for permission and would get back to us on what they say about it.
I finished my antibiotic and pain medicine yesterday. I was also finally allowed to wash my hair for the first time in 11 days which felt amazing. It was definitely getting pretty nasty lol. It didn’t really hurt to wash it. My ear feels completely numb still. I tried to avoid really touch it or rubbing around that area/the incision though. I have a lot of dried blood behind my ear too which I’m struggling to get off.
After my shower I took a look and tried to find my incision/where they shaved my hair. They were so neat with it that I really can’t even take a picture of it because you can’t see it lol. It’s kind of underneath my hair and completely invisible. Dr. Willcox is like an artist with how he does his cuts. It’s amazing.
The first post-op shower is the best feeling ever.
Today was the best I’ve felt in nearly 2 weeks. I was still working from home, but much more with it. I didn’t take any pain medicine at all or even a nap. I cleaned the house when I finished working. I’m also back to eating completely solid food (that took awhile, even though I didn’t have a sore throat, it was hard for me to bite down/chew things for awhile because of the pressure it put on my ear).
I will really be back to my self on Monday. On Monday I’ll be back to working in the office and depending on how well I’m feeling, back to the gym as well.
I took a break from working on my book with my surgery, but I’m pleased to announce that it is almost complete. I met my goal of writing over 50,000 words in November during NaNoWriMo and have a total of over 90,000 words. I will of course need to update it with everything since going bilateral, but overall I’ve made great progress with the first draft and I’m excited to see it complete soon.
That’s about all I have for now. I’ll update after the 24th (or 23rd) after my activation! What an amazing Christmas gift and blessing this will be!
Last night I attended Advanced Bionics’ online webinar that was all about the new Q90 processor. This was really important for me since I recently found out that I am eligible for an early upgrade to trade in my current Q70 processor for the new Q90.
The webinar was very informative. The Q90 looks almost identical to the Q70 but it is smaller and thinner. It also comes with a few new features to help you to adjust to different sound environments and to block out distracting background noise better. It comes with the option of using a smaller battery that is about half the size of the smallest battery used by the Q70, but all of the sizes used with the Q70 are still compatible with the Q90 as well. The battery life is the same in the Q90 as it was in the Q70. One of the biggest advantages with the smaller battery size option (other than the obvious comfort) is that it will fit inside the AquaCase better.
The three new programs offered in the Q90 are the AutoSound, SoundRelax and EchoBlock.
The Auto Sound feature adapts automatically to the environment you are in. It helps you to better manage noise for more comfortable listening. Sound Relax makes sudden sounds more comfortable to hear. Advanced Bionics gave the example of a golf club hitting the golf ball or dishes clanking together. These sounds can be a bit annoying for a cochlear implant user, so with the automatic Auto Sound feature, this noise is softened a bit to be more comfortable. It doesn’t affect alarms or safety sounds though, so you won’t have to worry about missing something important with this feature. Lastly, EchoBack is the one program that is not automatic. EchoBack allows users to hear better in noisy environments.
The Q90 makes me really excited about going bilateral in less than 10 days. I liked hearing about how there were some features that would be only available for bilateral cochlear implant recipients like the StereoZoom feature. There will be features that will allow users to stream sounds through both cochlear implants. They will work simultaneously together to support each other. This will help to create an overall better listening experience.
I asked one of the women doing the webinar if I would be receiving the new Q90 when I received my second implant on November 3oth (It’s not widely available yet, I’m just lucky to have been chosen to upgrade my Naida Q70 from my first implant for it ahead of time) and she said yes so I’m very excited about that.
Overall the webinar was very informative. I’m excited about the new Q90 processor. It doesn’t sound like it will be drastically different from the Q70, so it should be easy to adjust to.It sounds like it will help to give me clearer sound and an even better listening experience (if that’s even possible).
I know what you’re thinking…
I thought you said your first cochlear implant support group meeting would be your last.
And you’re right, I did.
Back in May I went to my first cochlear implant support group when they did a discussion on cochlear implants and dementia. It was extremely depressing and I felt the whole atmosphere to be rather negative. I vowed I’d never go again.
Well, things happen. I kind of lied.
It’s been a weird week.
I broke up with my boyfriend. If you read my blog on a regular basis, you’ll know I loved him very much. I still do. I think a part of me always will. I’m not going to go into the details about that here. Let’s just say it happened, it hurts like hell, and I needed to get out of the house.
A friend of mine, Wayne, helps to run the Cochlear Implant Support groups for the Haddonfield area (the ones closest to my home). We are friends on Facebook and Wayne and I talk on a regular basis. He knew that I had just broken up with my boyfriend and was really hurting, so he told me I should come to the next support group. He told me it would do me good to get out of the house and “you never know who you’ll meet” (I mentioned on Facebook how I needed to make friends. My boyfriend was not only my best friend, he was my only friend. Breaking up with him was more than just breaking up with a boyfriend, it was breaking up with my best friend, too). I kind of felt obligated to go after that. Plus, I figured it was a welcome distraction. Sure beats staying at home, feeling sad, and crying myself to sleep anyway.
The topic was actually pretty interesting. It was on hearing preservation after the cochlear implant surgery. You may remember me mentioning previously that I still had the same amount of hearing left in my ear post-surgery. I was interested in hearing what they’d say about that since the topic was definitely pretty relevant to me this time around.
Dr. Pelosi, assistant professor and otolaryngologist at Jefferson University, was the one doing the presentation. I have heard quite a bit about Dr. Pelosi especially when I did my early research for a cochlear implant surgeon. My first impression is what any newly single 20-something year old girl would think, “He’s really hot”.
Hottest doctor, ever?
But of course looks are not everything and I have a really weird thing with people who are highly physical attractive. I assume most highly attractive people are jerks. I’m not outright saying I thought Dr. Pelosi was a jerk. I didn’t think that at all, he seemed like a nice guy. I did however get the impression that he was a little coincited. But he was a nice guy and he was smart.
Dr. Pelosi made a lot of interesting points about hearing preservation post-cochlear implant surgery. There were many things I didn’t know like how the size and shape of the electrodes may play a role in hearing preservation. Also, the speed at which they insert the electrodes can have an impact. Dr. Pelosi said that thinner curved electrodes inserted more slowly may help with post-implantion hearing preservation as opposed to thicker, straighter electrodes that are inserted more rapidly. This is because there is a nerve by the cochlea that the electrodes are inserted near. Ideally, surgeons want to be as gentle as possible when inserting the electrodes so that they don’t hit that nerve. Hitting the nerve is what can cause a loss of residual hearing. With the thin, curved electrodes inserted slowly, there is a smaller chance of tearing or otherwise damaging that nerve.
The only thing I didn’t really like with Dr. Pelosi’s presentation was that he used a lot of really technical terms and big words. I felt like some of that was because Dr. Pelosi is a very young doctor — much younger than most of the people at the support group — and he may have done that to try to prove himself to them. But I would have rather he used less complex language that is easier to understand. I think had my surgeon who is older and more experienced, Dr. Wilcox, done the presentation I would have understood it a bit better.
At the end of the presentation a lot of people asked questions. I liked that the group of people were mostly different from the group that attended the first support group meeting I went to. They were more interested and less negative about cochlear implants. Most of the questions were about the electrodes and the hybrid cochlear implant which Dr. Pelosi also touched on. I realized that I didn’t know how many electrodes I was inserted with, so I asked Dr. Pelosi if that mattered. He told me it didn’t; all that mattered was that it worked and that I knew what kind of device I had which I did. I kind of figured that much.
Some of the people asked beyond stupid questions that I had to try not to laugh at. The whole “there are no stupid questions” can really be a lie sometimes. The stupidest question I heard was from a guy wanting to know why they couldn’t tune his cochlear implant electrodes to match that of a piano or something. Obviously he was a musician who lost his hearing later in life. He swore he knew exactly which sounds he was and wasn’t hearing and how it should sound.
Maybe I am being biased or unfair because I’m not a musician and I don’t know much about musical tones or piano keys, but this doesn’t seem right to me at all. No, you don’t know what you are or aren’t hearing. You’re learning the sounds. You can’t just pick and choose which sounds you do or don’t hear or receive. It doesn’t work like that.The whole cochlear implant thing is a process and you’ll discover new sounds over time.You can’t just wake up one day and be like “I want to hear this piano key today and this one tomorrow”. I feel like that should be common sense, which I felt this guy obviously didn’t have. Based on the look on the faces of others who attended the meeting and even Dr. Pelosi (who remained extremely professional and didn’t outright laugh in the guy’s face), they agreed.
After the meeting I made a point to talk to some people and connect with them. I won’t lie; half the reason I did this was for networking purposes…. I am writing a book about my experience, afterall! I need to build my connections so I can sell my book once I finish writing it and have it published. But I did genuinely enjoy talking to the people. They were all much older than me and most of them had very different stories. A lot of them lost their hearing later in life or had an illness that wiped out their hearing. I’m not sure any of them were born deaf or hard of hearing like I was. I swapped stories with them and also told one woman who was about to be activated good luck and not to be afraid. I reminded her that she might not like the way things sound initially, but if she worked with it, it would get better.
One thing I wish though is that more people my age would come out to these events. My mom told me that maybe I can help work on getting people there or maybe I can even look into starting my own group for people my age. I know that I’m not the only deaf or hard of hearing 20-something year old in NJ. I’m frequently told that deaf/hoh individuals are getting younger. I’ve seen them, too. When I worked at Walmart I saw many kids with cochlear implants. I always thought that was pretty cool. I also talked to a lot of people around town who have told me they have kids with cochlear implants. I think the reason why they don’t come to meetings or support groups is that they feel ashamed by it — they want to hide the fact that they even have an implant. That is sad to me. There is no reason to be ashamed. My cochlear implant is the best thing that ever happened to me. I talk about it all the time and I flaunt it because it makes me proud! I was given an incredible gift from God — the gift of hearing. I want everyone to know it. I just need to get more people my age to see things like that. I’ve always been deaf and loud, but maybe now I need to get a little louder.
Warning: before you read any further, this blog post might be sickening sweet/cute. You might puke a bit. Don’t say I didn’t warn you.
I’d like to share a glimpse of my love story today. I’ve already spoken many many times about how getting a cochlear implant helped me to strengthen my relationship with my boyfriend. I mentioned how supportive and amazing he’s been. But I want to focus a bit more on the before and after story here and also clear up some common misconceptions about how the deaf/hoh community forms romantic relationships or engages in dating in general.
I had my first real boyfriend when I was 21. Sure, I technically had a boyfriend before then, but I don’t think it really counts (I was only 14…a freshman in high school and we hardly ever saw each other after school — not really “dating” per say). It was the first experience I’ve ever had with serious dating and how my hearing could effect my relationship. It was a terrible relationship. My boyfriend at the time treated me very poorly. If I didn’t like or agree with something he would violently shout at me. My hearing (or lack thereof) only made things a hundred times worst. He had no patience for me at all. If I needed something repeated, especially more than once, he’d get very frustrated at me and scream and make me feel bad. Our relationship ended up getting very verbally abusive, and after spending just 5 months in it I began to not only feel worthless and unloved, but scared. I did the smart thing and left the relationship before he had the chance to hurt me beyond what his words already did to me.
This night made me wish my cat was my date.
I had two more relationships after that. One was very short and ended simply because we were not on the same page. We had a 10 year age gap in between us and had different backgrounds, pasts, and ultimately, futures. Simply put, we were not going anywhere. My hearing didn’t make much of a difference in this relationship either way, most likely because the relationship started and ended all over the course of a month. However, I will say that he was not a bad person and we are still friends. In fact, he’s helped me out a little with my writing career by introducing me to other writers looking to talk to deaf/hoh individuals. Just like how with hearing people some relationships just lack chemistry and don’t work out, the same is true for the deaf/hoh community.
The deaf/hoh community is also not immune to drama, cheating, and heartbreak. In my third relationship, I had all three. My boyfriend at the time always seemed pretty supportive of my hearing impairment. Sometimes he would even share with me news stories about new technology and other articles about cool things happening in the deaf/HOH community. I fell in love with him int he craziest, most twisted love story imaginable. When our relationship was at it’s peak I learned that he wasn’t into it quite as much as I expected. He was actually cheating on me the whole time, and not just that — he was getting married to the girl he cheated on me with!
But just as any hearing person can fall in love, out of love, and in love harder than ever before, so too, can deaf and hoh individuals. And that is precisely what happened when I met my current boyfriend, Larry.
I think that when you meet the right person that you’re supposed to spend the rest of your life with, you just know. That’s how I felt the first time I met Larry on OKCupid back in May of 2014. So I did what any girl would do when she falls hard for a boy and doesn’t know what he’s thinking or feeling — I got scared, freaked out, and ran away (okay, maybe no sane girl would do that…but I never said I was sane, did I?).
They say if it’s love to let it go, if it comes back it’s yours and that’s how you know.
I had to make a couple of mistakes before I could get it right. I think that’s true for most people in relationships whether they be hearing, hard of hearing, or deaf. That was definitely the case for me. But I did come back around, three months later and Larry was there waiting for me. We picked things up right where we left off. The past doesn’t even matter a bit.
This second time around I knew I was lucky. Most guys wouldn’t come back for a girl that has essentially abandoned them and left them in the cold with no explanation three months prior. But Larry’s different. I always knew that. That’s why I loved him. I made sure to hold on so tightly and never let go this time around.
Larry and I tell everyone we took things slow and took our time to develop a friendship before we got together. That’s kind of debatable though now when we both look at it. For me it was taking things slow compared to my last relationships. But we had our first day on September 1st and 12 days later made it official.
This was our first picture together, taken just a couple hours after we officially became boyfriend and girlfriend
One thing that is different for those who are hard of hearing/deaf and those who can hear when it comes to dating is first dates. I think they are always a bit nerve-wrecking for anyone, however even more so when you can’t hear. You not only have to worry about what you’re going to wear and not sounding stupid, but you have to worry about your hearing, too. Normally when I am planning a first date with someone I stress about picking a good place. Movies aren’t good because of course you can’t really talk, getting caption glasses are a bit of a hassle and very awkward especially for a first date, and without caption glasses I can’t hear anything at all. The mall is so much loud noise I couldn’t even hear myself think. Dinner seems pretty safe, but even that called for much stress and anxiety because I always had to choose a place that was almost guaranteed to be quiet — which when you’re planning a date on a Saturday night seems nearly impossible. It definitely can’t be a place with a bar, that’s for sure.
It took me about 3 weeks to figure out what to wear for our first date…this was the result.
With Larry choosing a place wasn’t as hard as it was for most people I’ve dated in the past. I knew I wouldn’t something laid back and fun so we could be comfortable. Chuck E. Cheese was my dream first date place, but I could never convince anyone else that it was a good idea and Larry was no different. So I compromised and chose my second choice place — Nifty Fifties.
I had been to Nifty Fifties for the first time a few weeks prior for my mom’s birthday and did okay with being able to hear. Not 100%, but compared to most restaurants I did okay so I thought I’d be able to get by pretty well.
Larry and I’s first date unexpectedly ended up falling on Labor Day, and it couldn’t have worked out better for us. I guess not many people think of going to Nifty Fifties for Labor Day. We were some of the only people there. It was quiet and I could hear him fairly well, even after lunch when we went outside to play mini golf. My nerves went away pretty quickly and he became my best friend within about 2 minutes of meeting him.
It’s safe to say after that initial date the question wasn’t “Will there be a 2nd date?”, but rather… “When can I see you again?” .
I’d love to say that all of our dates, especially pre-cochlear implant, were as easy as that initial first date. But that most certainly was not the case. As I wrote yesterday, bowling pre-cochlear implant, which is what we chose to do for our 2nd date, was a bit of a challenge. We couldn’t really talk at all and it got a bit frustrating. However, unlike my first ex, Larry never got mad at me for not being able to hear. He always looked for ways to help me and support me. He never once yelled at me, belittled me, or made me feel worthless. He always did what any great boyfriend should do — loved me.
Larry and I have been through a lot in the 11 and a half months that we’ve been together. We seen the strength of our relationship tested time and time again, even before we started dating! Within just a couple of days of us reconnecting, I began seriously considering getting my cochlear implant. From day one he was always very supportive of me saying, “No matter what you choose I’ll support you every step of the way”.
Of course, when you’re in a new relationship and everything is going well you really want to believe that, but you can never really be so sure. People say they are going to do things all the time, but that doesn’t mean they will do them or that they really truly believe that. Take for instance the case with my first ex. He told me he loved me, that he’d always be there for me, and he’d never hurt me. I believe our relationship turned abusive within three months or less of dating. Needless to say, his words were all a bunch of empty lies.
But it was different with Larry. He not only said it, he proved it.
I got scared a lot especially as things started to move forward more and more with my surgery. When I got down to about a week before my surgery I panicked frequently. I would sometimes text Larry in tears asking him things like “Are you sure you’ll still love me if I do this? Do you realize I’ll have a magnet stuck to my head? Will you promise to help me with this?” He always assured me he’d help me through everything — we are Awesome Sauce and Applesauce — and more than that we are teammates — we get through everything together.
Awesome Sauce and Applesauce, forever teammates, forever lovers.
Larry always got so happy and excited for me whenever I had a new update. He was always working when I had my appointments, but he was always the first one to get the news. He wanted me to get my cochlear every bit as much as I did if not more. Larry also always helped me to be confident and more positive. When I would get scared and wonder whether I was making the right decision or if the cochlear would even work Larry always reassured me that it was God’s will and that everything would work out great and he was always right.
After my surgery Larry stayed true to his word and was always by my side. He was on the road throughout the week, but he always texted me whenever he could and visited me on the weekend. The first time he visited me after my surgery he bought me flowers, a card, and a small stuffed animal to cheer me up. I was very self conscious about my appearance since I had part of my head shaved, a ton of stitches, and was unable to watch or comb my hair, but he always told me I looked beautiful…and they weren’t just words — he meant and proved every word of it.
When you look like this and your boyfriend still calls you beautiful, you know you’ve got a keeper.
Healing after my surgery was a process and presented some challenges for us in our relationship. For one I got dizzy and drowsy a lot for the first couple of weeks. I couldn’t stay awake for long periods of time or even really sit up at all. The first couple of times he came over post-surgery our visits were very short because I’d fall asleep straight away or get dizzy. He also had to wait over a month before kissing me. We were both too afraid that I might get hurt if I tried to kiss him, especially since it hurt to move my mouth due to the pressure it put on my ear. But he didn’t complain not once, he understood and stood by and supported me.
Post-activation was and is a whole nother new journey for us. Unlike how most YouTube videos show it, I didn’t just get switched on and have everything perfect — I had to really learn how to hear things. I had my mom working with me on different words and sounds and Larry working with me a bit more on general communication — my phone skills to be more specific. He made me overcome my fear of the phone by calling him on a daily basis. This was essential for us since he is a truck driver and can’t text and drive for obvious reasons.
Larry and I definitely had our share of laughs with my cochlear, too, especially in the beginning. A cochlear implant is a magnet — so like most magnets, it’s going to stick to metal. My boyfriend has a metal truck. My cochlear implant can and does get stuck to it on a regular basis. There’s been many times when at the end of a date we stood outside of his truck, kissed each other good by, went to move and somehow my head ended up getting stuck on his car door. These times were never awkward, but funny. I think that when you can laugh at things like that in a relationship and not get embarrassed or feel awkward, it’s a sign that you’re in the right relationship.
We’ve enjoyed the journey of discovery together as well. Larry can hear anything normally, but he gets a kick out of watching me because he knows that it’s new for me. He’s not selfish in what he can hear, but rather, he wants to share it all with me. When I first got activated it was almost like a game for us. He played me bagpipes, celtic music, native american indian music, let me listen to the sound of coin change falling, and bought me a couple of rubber duckies (which currently live on my desk at work to make me smile during hard days) to listen to because I was so amused by the sound of the squeaking. When he went on vacation he even bought me back a bell as a souvenir because I was so amused by the sound since it was something I could never hear prior to getting my cochlear implant.
These ducks now live on my desk at work and make me smile whenever I look up at them and remember why I have them…
I realized that throughout my cochlear implant journey (which is far from over — in fact, I don’t think this is something that can ever really end in my life, it’s constantly expanding), I not only fell in love with Larry and enjoyed celebrating victories, sharing nerves, anxiety, and all of the roller coaster of emotions it gave me, but Larry fell in love with me, too. The things that would’ve seemed like a hassle or a problem with other people are nothing for Larry. Larry never minds having to help me adjust my cochlear, holding my case for me when I need to take it off for amusement park rides, or just being a source of comfort for me when I need it. He realizes that it’s all a part of his job as my boyfriend, and this is a job that he is very proud of and I don’t think he would want things any other way.
There are some things in life that are universal. We all live, we all die. We all smile, we all bleed. We hurt, and above all, we love. Sure, being deaf/hoh and/or getting a cochlear implant may change many things in your life, but it doesn’t change your ability to fall in love. And it most certainly does not make you love-less or unworthy of love. When you find the right person, they will love your for the person you are, not for your ability (or lack thereof) to hear or even the devices you use to hear. They will love you for you, every single inch of it. And that’s exactly what I found in Larry.
Reasons I need to come up with a new nickname for Larry: “Knight in Shining Armor” is too long to use for bowling….
My boyfriend, Larry swears we’ve been bowling since I got my cochlear. But I know, for a fact, that he is wrong (“I know for a fact” is my catchphrase by the way :)). I double checked this blog — nope. No mention of going bowling with a cochlear implant. I also know, for a fact, that that is something I would’ve blogged about before if it happened.
Actually, come to think of it, if you consider what we did during our Disney vacation at that cool McDonalds to be “bowling”, then Larry would be right..but nope, that doesn’t count (sorry, Larry).
Sorry, Larry…this was a lot of fun, but it doesn’t count as “real” bowling…
Anyway, back to the point. My boyfriend and I went bowling together on August 9th. Larry comes from a family of bowlers. He is a huge bowling nerd and I love to make fun of him for it. He’s one of those guys with his own shoes (which are actually broken…), bowling balls (yes, that is plural…one of those he managed to break as well. Larry…what’s wrong with you? Breaking all of your equipment…), the whole 9 yards. Yet, despite him coming from a family of bowlers, we don’t really go bowling all that much. I blame it on the fact that bowling’s gotten a bit expensive over the years and also Larry’s a truck driver — he’s home about twice a month, max, which doesn’t leave a lot of room for us to see each other, let alone bowl together.
My boyfriend is my best friend. Not only is he my best friend, he’s pretty much my only friend right now. Or at least, my only “real” friend that I make an effort to see in real life instead of just talking to on Facebook or Twitter (I know that sounds kind of sad, but it is what it is). When he’s not home it’s not like I go out with other friends and do things like bowling.
When you’re the best of friends having so much fun together…
So, prior to us going bowling on August 9th, the last time we went bowling was before my surgery. Actually, to be precise, it was November 15, 2014…two days prior to receiving my implant.
Bowling with Larry is always fun. Like I said, he is a bowling nerd. I get a kick out of just watching him bowl. He’s got the whole “old school grandpa” form and everything. I like to tease him and tell him it looks like he’s dancing when he’s bowling because it really does.
Unlike Larry, I am not blessed with impressive bowling skills. Actually, just the opposite. If I bowl a 60 then I’ve had a great time. 35 is about my average. The sad part? I actually took a college course on bowling…
The few times we went bowling before Larry always tried to help me out, but it was difficult. First, as we already established, I really suck at bowling. Second, bowling alleys are VERY LOUD. Naturally. You have the balls, the pins, the music, people talking, the workers on the loud speakers, everything. Prior to getting my cochlear, everything just sounded like loud noise. I couldn’t distinguish any of it.
Larry and I really couldn’t have a conversation at the bowling alley prior to me getting my implant because I couldn’t hear him at all. If he wanted to tell me something he had to text me even though I was right there with him (and yes, that did get very annoying). When he tried to help me out with my bowling he had to rely a lot on hand singles and using his body to show me where to stand, how to hold and throw the ball. Yes, he’d have to do this even if I could have heard, but not quite to this extent. I never learned sign language, but this was like Larry and I creating our own form of it as we went along.
I think it’s safe to say that bowling with my cochlear implant was much more fun that bowling without it.
None of these problems with noise were prevalent at all, and we went on one of the loudest possible nights to go bowling…not only was it a Saturday night, but it was actually National Bowling Day. Just like any normal bowling alley would do, the one we went to (Brunswick in Turnersville) had quite a bit of a celebration for it. To be more specific, they actually decided to throw a bowling party that night.
National Bowling Day goodies that we won from cheating because of course…
When we went in to buy our games and get our shoes I had a nice conversation with one of the workers. He was an old guy and I’ve seen him there many times before. I always thought he was a very nice guy. I was amazed at how well I could hear him despite all of the background noise. I don’t think I have ever actually really been able to hear the people at the bowling alley like that before. I pretty much always just told Larry my shoe size and any other information I needed ahead of time so he could answer for me. This time I could hear the guy well, but he couldn’t hear me. It was pretty weird being on the flip side of it. The guy told me that he lost some of his hearing and couldn’t hear very well since he had a stroke. I explained to him that I was born hearing impaired and have lived all my life without hearing so I understood what it was like. Conversations like that are always nice to have with people.
After I got my shoes and Larry got his on and his bowl out we were able to get started with our night of bowling. One of the first things I noticed was that I could hear the music. I always knew that bowling alleys played music of course, but it’s been many many years since I’ve actually been able to hear that music and understand it, let along sing along with it. The last couple of times that Larry and I have went bowling today I remember feeling a bit jealous because he could hear the music and understand it and I couldn’t. He didn’t try to make me jealous, of course, but I couldn’t help but feel that way. He was sad for me. He would point out which song was playing or say how he liked it and would ask me if I could hear it but the answer was always “no”. It felt so nice to be able to hear this night and enjoy it. It was the first small victory of the night.
He’s smiling like that because I was tickling him…and then he started to tickle me…so we ruined this picture too.
When we got our shoes the people at the counter gave us a sheet of paper with some questions on it for National Bowling Day. They were having a contest that people could enter to win some prizes. The contest was really just a little quiz with some questions about bowling like “How long are bowling lanes?” and some questions about basic bowling terminology. Larry knew the answer to most of them, and of course we cheated and googled the ones we didn’t know. It was a lot of fun working through it together. As we discussed the questions and our answers together I paused for a moment and said, “Wow, I can hear you. I don’t think we’ve been bowling since I got my cochlear”. Larry said we have, but I knew we haven’t (and I was right so HA!). It was a nice feeling!
It took us way too long to get this normal picture…and I almost kind of ruined it by laughing.
Larry was able to “help” me with my bowling quite a bit too. And I say “help” because I am beyond the ability of being helped when it comes to bowling lol. He definitely tried though and it was a lot easier since I could hear him. I didn’t have to constantly say “what?” or say “I can’t hear you”.
We were at the bowling alley for several hours so we ordered a pizza to split for dinner. That was another interesting experience for me. Not only was I able to hear the worker taking our order, but I could hear her far better than she could hear him. I’ll be honest and admit that I actually was getting frustrated with her for not being able to hear me. I hate when I get frustrated at people for not being able to hear me especially since I know all too well how mad I used to get for not hearing people and then having them get mad at me for it. It was definitely an interesting feeling to be on the opposite side of that though…I never thought I’d see that day come.
I don’t think that bowling is something many people think of as needing to hear for, but you’d be surprised by how much more enjoyable it is when you can hear. Not only that, but it’s more enjoyable when you can hear the sounds for what they are and distinguish between them all rather than just hearing a bunch of loud noise. It’s yet another activity I can add to the list of things that have been more enjoyable since getting my implant.