You know, one of the reasons my posts slowed down here was because things just became … normal. I woke up every day, put on my CI processors, heard my world in a way that felt normal to me, and that was about it. Once you get past the early days where every new sound is a revelation and it’s just so freaking cool to HEAR again, there’s not much to say. And, um, you kind of start to take things for granted.
This past Saturday I expected to be like any other day. I put on my right processor … beep, I can hear, good to go. (Actually, with the new processors I can switch them up and it doesn’t matter which ear they go on – another really helpful improvement.) Put on the left, start applying my moisturizer, finish my moisturizer and hey, I can’t hear. WTF?! I took off the processor, pulled the battery off and put it back on, and watched the LED lights to see what happened. Usually I’ll see four flashes to indicate a full battery, and then a quick green light. This time I saw nothing for a long time, and then a solid red light that didn’t go away. Fuck.
I still wasn’t too nervous; I figured maybe somehow my battery didn’t recharge overnight. So I tried all the others, with the same result.
It’s funny how entitled I feel now – how dare I not be able to hear?! This is ridiculous and awful! And then I remember that it was my reality (only worse, because I couldn’t hear AT ALL) for so many months when I first went deaf.
Dave was still sleeping so I began quietly opening dresser drawers, trying to remember where I put my old Harmony processors, batteries and battery charger. I never expected to be using my backup processor so quickly but at least I had it. Since my left ear is much stronger, I put the new Naida CI on that ear and put the Harmony on my right. (Which meant I had to figure out which processor went on that ear; with the Harmony, if you put the wrong processor on the wrong ear, it will not work at all.)
I came downstairs to use the computer and see if other people had experienced a similar issue and if it was, indeed, a fault in the processor. It wasn’t too bad, really – I could tell that I was hearing differently on the right side but it wasn’t really jarring. But the house was silent, and once Dave woke up and came downstairs, it really hit home how differently I hear with the Naida Q90 versus the Harmony.
My right ear is weird – I have electrodes turned off on that ear, and high pitched sounds make me really dizzy. With the Harmony I was always turning the volume down or covering the microphone if there were sudden loud noises. It wasn’t until Saturday morning that I realized I hadn’t had to do that once with the Naida.
Dave pulled out dishes to feed the cats, filled the metal vacuum pot and put it on the stove to heat for coffee, coughed and cleared his throat … and I immediately had to pull the Harmony CI off my ear, look at the volume wheel and turn it down. All of those high-pitched sounds were unbearably sharp to me, almost painfully so.
As I went about my morning, I remembered that my headpiece cable for the Harmony was frayed, which meant sound was cutting out every time I turned my head or smiled. So I’d smile, suddenly hear nothing, after a second there’d be a loud WHOOSH of sound (because remember, the Harmony doesn’t activate ClearVoice right away), and finally the sound would moderate to a comfortable level … then I’d turn my head and the whole thing would repeat. It was maddening.
I thought hey, maybe I can wear the new headpiece with my old Harmony! I went upstairs to check, but the connections aren’t compatible. Then I remembered I’d received some old equipment from a fellow who had upgraded quite a while back, and there’d been a headpiece cable included. I never even opened it because my headpiece and cable for the Harmony is a one-piece unit. But I figured I’d check and YES, this cable worked with my Harmony! So I do have one functional unit using that cable and the new magnet headpiece that I wear with my Naida.
My email to Advanced Bionics was in vain because it was the weekend, but I did hear back on Monday afternoon. I have to admit I’ve noticed a difference in the Customer Service response compared to my early days of wearing a CI. The customer service reps often seem confused and not as knowledgeable as they used to be. The person who helped me asked for some information, which I provided, and then said she entered a processor replacement request, gave me an RMA number and referenced my old audiologist in Illinois, even though I’d just given her my new Michigan audiologist information. That really gave me pause. I corrected her, but come on, really?! This is pretty important stuff here!
I’m supposed to have a new processor in two business days but I’ve heard nothing since – no tracking information, etc. I don’t know if my processor will arrive already programmed or if I have to take it in to have the programming put on. (I know I could ask but eh, I figure I’ll know soon enough once it gets here.) In the meantime, I’m realizing how much I’d already gotten used to my new hearing. I can’t really use the ComPilot – it only works in one ear (the Naida) and everything sounds really uneven, so I prefer just to do without for now. I’m back to wearing headphones and using an MP3 player at the gym.
And I know, boo hoo, poor me — “You want some cheese with your whine?” I am still a deaf person who can hear! Totally not complaining. But I can’t help but compare and realize how much I really did take my bionic hearing for granted, especially with the improvements since I upgraded. I guess it made more of a difference than I realized!
Oddly enough, the way the processors bring in sound when I first put them on is the biggest change for me between my old and new CIs. I had my Harmony programming (called a ‘map’) put on my new processors and it works really well, so things sound pretty much the same. I do find that I never need to adjust the volume with these processors; on my old ones, I usually had to fiddle with my right processor (my worse ear, the one that’s been deaf longest and has some high pitched electrodes turned off because they make me dizzy). I asked about getting specific hearing strategies put onto these processors (I have five slots per ear for different programs) and my audiologist told me that everything is pretty much automatic now. They’ve found that people really don’t like to have to switch programs for different environments, although that’s still an option for the future if I decide I want them.
Speaking of my audiologist, I just LOVE her. The whole clinic, actually. I’m going to the Audiology Clinic at Western Michigan University in Kalamazoo, a town I had never been to before my Nov. 30 appointment to have my new processors activated. I thought it was really far away but honestly, the drive is about as long as it took me to get to my Illinois clinic in Hinsdale … and the drive is a lot less stressful. I was always a bit uncomfortable knowing I had no audiologist in Michigan after we moved, and it’s a big relief to have that sorted out and to be working with someone who really listens to my feedback. It’s obvious that quality of life is important to her, and my visits have been helpful and informative. She even gives me encouraging feedback during those dreaded hearing tests, which makes them a bit less onerous.
The activation appointment was really not as big a deal as I expected it to be. I had two huge backpacks full of parts and accessories and the processor parts themselves, and I wasn’t sure what to actually bring. I ended up fitting just about everything (except the extra/backup parts and some accessories like the TVLink) into one backpack and I brought that, just to be safe. It took no time at all to put the programming from my Harmony processors onto the Naidas, and after that we just went over some of the basics (how to change certain parts) and how to pair the ComPilot to my phone and the TVLink.
The Phonak ComPilot almost deserves its own post, but I’m planning to write an entry focusing on music (which ties in to this topic) so I’ll just briefly explain what it is. The Naida processor is Bluetooth-capable, and the ComPilot is a streamer that you wear around your neck so you can get stereo sound from things like cell phones, MP3 players, tablets, laptops and computers. No more headphones! I also use it with the TVLink device – again, it turns my CIs into wireless headphones and puts the TV sound right into my ears; there’s also a small clip-on mic that I can have someone wear so I can hear them better (a presenter/speaker in a seminar, a dining companion in a restaurant, etc). Although I do have to have the ComPilot hanging around my neck, it’s a far cry from the wires I used to have to use to get this kind of sound, and the quality of sound that I get is truly remarkable. It’s my favorite feature of my new CIs, by far!
Every day I have a moment where I go from being deaf to actually hearing sound. It’s not when I first wake up – my cochlear implant processors are nowhere near my head at that time. Generally I get out of bed, grab a couple of rechargeable batteries off the charger, carefully pick up my CIs (I’ve learned the hard way that the cord connecting the headpiece to the processor is fragile) and carry them with me to the bathroom. Sometimes I put my CIs on right when I get out of bed, but usually I wait until I’ve had time to fix my hair. That involves sliding my hands up under my hair, against my scalp, and shaking to get the curls going and fix any areas that got pressed down or wonky overnight. If I do that when I’m wearing the CIs, I basically would fling them right off my head!
Before I upgraded to the Naida Q90 processors, I had to brace myself for this moment. It’s overwhelming, going from total silence to a rush of sound all at once. My Harmony processors had a program called ClearVoice that would compress any steady background sound and kind of mute it. So if, for example, I had the fan on in the bathroom, my first sound would be the roar of the fan and then ClearVoice would kick in and the sound would get compressed down to a less overwhelming level. If Dave were to come in and start talking to me at that point, his voice would be the main thing I heard and the fan would fade away to the background – hence the ClearVoice name. It helps you hear when background noise is present.
Even though I’ve had the Naida processors since the end of November, I’m still not used to the difference when I first put them on. I still inwardly cringe and wait to be bombarded with sound for that first few seconds before the compression program takes over. Now, though, what happens is this: I hear nothing for a second or two, and then I hear a beep. After that beep, I can hear. Generally I’m in a quiet environment so there’s not a whole lot going on noise-wise, but there’s always slight sounds happening even in a quiet room. It’s like everything gets clicked into focus, the difference between A and B in a vision exam where A is the blurry lens and B is the one that lets you read that last line on the eye chart.
But the way these processors activate each time I put them on is such a relief. There’s no overwhelming loud sound coming in first and then getting compressed. The first sounds I hear are already compressed. That alone is a huge improvement. But there’s also that beep, which (for me anyway) serves to prepare me for hearing. I focus on that and I know I’ll be hearing in a second. My little warning tone, I love it so.
I haven’t posted in forever so I’m sure nobody’s reading this anymore, but for the first time in ages I actually have cochlear implant-related news. In April 2018 it will be ten years since I went deaf (and ten years since I started this blog, geez). I can remember getting my cochlear implants and thinking they were all I ever needed – I couldn’t imagine needing to upgrade. But ten years on, and I’m down to one headpiece that functions well, one that is okay for the most part, one that doesn’t work at all and one that cuts out every time I smile, turn my head, etc. (the cord is frayed and loses connection). I think the only functioning T-mics I have are the ones on my two processors; the backups long since stopped working. And I received a letter from Advanced Bionics this spring telling me that my Harmony processors are now obsolete and no longer covered. When I called last year to get a replacement headpiece, I was told they don’t make that style anymore and I should really upgrade.
“Oh, I’ll wait until we move,” I said. “I want to see how our finances look at that point.” I had no idea how expensive it would be to upgrade, and it made me nervous. A house was more important to me than hearing at that point.
So now we have a house. (Yes! We bought a house in June, in Michigan. I really need to start writing here again.) My headpieces really started acting up, so I contacted Advanced Bionics with my long list of questions. And I’m shocked to say that less than a month later, I’ve been notified that my insurance approved the upgrade, they are accepting my two backup processors as a trade-in to cover the 20% balance I owed (which leaves a big fat ZERO due) and my new processors are being shipped to me today!
I also had to find a new clinic since I haven’t been mapped since I lived in Illinois, so I’ll be going to Western Michigan University to have these babies activated and mapped. I can’t even tell you all the new features I’ll have – I’m getting the Advanced Bionics Naida Q90 in ruby red – so I have some learnin’ to do.
But I’m pretty sure I can listen to music wirelessly with the ComPilot (which I’ll wear around my neck) and Bluetooth technology. I used to have to hook all these wires up to have the music go right into my CIs, so I’m really excited about this!
What a difference (almost) ten years makes. I’m still reeling.
I went to a new dentist last week, for my regular cleaning and updated x-rays. I’ve never been fond of the dentist to begin with, but since I got CIs it is extra challenging because being reclined makes my CI processors (aka my “ears”) fall off.
I’ve tried many things over the years — wig tape, headbands, scarves, even a knit cap. Nothing is foolproof (although the knit cap worked the best, since it also helps to keep my magnets where they need to be). However, I am not about to pull out a knit cap in August.
This time around I used something called a Snuggie from Advanced Bionics, basically tubing made to fit my Harmony processors that fits snugly around my ear. It works perfectly to keep the processor from being pulled off my ear as my head is reclined back. The only issue that remained was keeping the magnets from being knocked out of place by the headrest.
I played around with a scarf tied strategically over both magnets, but eventually decided it was too fussy. I figured I’d just deal with the magnet situation if and when it arose.
In the end I didn’t have too much trouble; they were able to adjust the headrest so that my magnets stayed in place during most of my visit. They did slip off when I was told to turn my head to the side, but those instances were brief and my other magnet stayed in place so I had enough hearing to still follow instructions.
What really impressed me, though, was when the dentist came in for the exam portion. She had a bit of an accent, and originally asked me a question when her back was turned (she also had a mask over her mouth, just for an added challenge). I had no idea if she was talking to the dental hygienist or me, so I stayed silent. She turned back to me, and I met her eyes and said, “I can hear you, but I also read lips to understand what you’re saying.”
Her face lit up and she pulled the mask down. “Thank you for telling me! That’s very good to know.” Then she turned to the hygienist and asked her to repeat everything for me — although the dentist kept her mask on, everything she said was repeated by the hygienist so I could read the hygienist’s lips. I’ve never had anyone in the medical profession do that for me before and it made a huge difference.
Not only did I get a clean bill of dental health, I came away feeling like my needs were met with respect, kindness and ingenuity. It almost makes me not dread going to the dentist again!
The year is 1974. My family is making the annual pilgrimage from Illinois to Florida in our trusty Oldsmobile, Mom and Dad chain-smoking in the front while my brother and I fight for prime real estate in the back seat. We finally arrive in Georgia, and I put my family through a familiar scenario:
We pull up to the drive-through window of McDonald’s. My dad calls out the orders, three variations of hamburgers-with-everything plus French fries and drinks. Then he adds, “And one plain hamburger.”
My brother groans and slumps back. My mom taps her nails on the window trim. The inevitable request comes. “Uh, sir, can you pull over and wait?”
This was no ‘have it your way’ situation. My plain hamburger meant that we waited an extra 10 or 15 minutes for it to be cooked and slapped between a bun sans all the junk that turned my stomach.
I’m sure many people can tell tales of their childhood food aversions. If you’re a parent, you probably deal with this sort of thing from your own children. What we often don’t talk about, though, is when this pickiness extends into adulthood.
I’m 51 years old, and I still don’t eat salad (or raw vegetables of any kind). If you try to sneak Parmesan cheese into my food, I will smell it and push it aside. I’ve come a long way, though. Mushrooms, fennel, balsamic vinegar and Havarti cheese all now have a place in my life. It was a long, nose-wrinkling process, however, and some foods still didn’t make the cut (sorry Gruyère – you just smell too nasty).
I was lucky enough to visit France in my late 20s. After days spent wandering Versailles, visiting the Eiffel Tower, and watching artists at work in Montmartre, I was often famished. I am ashamed to admit that the restaurant that most frequently got my business was none other than McDonald’s. I was thrilled to tuck into an order of chicken nuggets with a side order of barbecue sauce. Some days it was all I ate, after a breakfast of coffee and toast.
I don’t know what it’s like now, but Paris in 1988 was a challenge for someone who didn’t speak French. Add a hearing loss and inherent shyness to that, and ordering from a restaurant was fraught with peril. After ordering a pizza that inexplicably arrived at the table with a topping of runny eggs, I avoided cafes and looked for the golden arches.
Things started changing for me around the time I had my cochlear implant surgery in 2008. It’s fairly common for the nerves that control taste to be damaged during surgery, and I was not spared. For about a year and a half, things like bread, cookies and cake had a strange, spongy texture and no flavor. Water was oily; most flavors were flat. The front center area of my tongue was most affected, so I tried to skip that area and quickly get the food to the back of my tongue. I drank beverages through a straw.
I found that adding heat and spice livened up some of the dead flavors, so for the first time in my life I gravitated toward hot, spicy foods. (I kept that preference once my taste buds were back to normal.) While I was busy looking for ways to burn some life into my taste buds, we also started watching more cooking shows on TV. I learned how to prepare and cook things I’d never even heard of before, like jicama. I discovered Ruth Reichl’s books, and found myself curious about some of the more exotic dishes she described.
As I slowly started trying things that were new to me (and enjoying most of them), I decided to really push myself out of my comfort zone. I signed up to become a recipe tester for Cook’s Illustrated, with the caveat that I had to try recipes with at least one new ingredient. Testing a recipe means I have to follow everything to the letter – the ingredients, cooking method, pan size, and so on. Instead of, say, substituting Greek yogurt for sour cream, I have to use exactly what the recipe calls for.
I admit that just last year I sat in a restaurant, ordered a dish that had pasta salad on the side (something I’ve never eaten because I hate mayonnaise), and told myself that if my kids could follow the ‘just take one bite and try it’ rule, then so could I. It was made with aioli, which I’d never had but assumed tasted like mayonnaise. For whatever reason, I loved it. Maybe I like aioli better than mayonnaise, or maybe aioli tastes nothing like mayo, or maybe I actually don’t mind mayo anymore. Who knows. But I tried it!
So I’ve come a long way, food-wise. In all honesty, I still wouldn’t order a burger with everything on it. But ordering it plain wouldn’t even cross my mind these days.