Monthly Archives: April 2009
I don’t wear my CIs to bed, so every night I abruptly descend into silence. First one CI comes off, and I carefully nestle it into its special case. The sounds around me completely change, because if I’m just wearing one CI it makes a huge difference…it’s like a completely different environment, sound-wise. The minute I slide the headpiece from its grasp on the internal magnet on the second side, there’s complete and total silence.
It’s hard to describe how weird it is to go from hearing the cats purring (because there’s always one or two cats already in residence on the bed…they share it with ME of course, not the other way around), hearing Dave breathing and/or talking to me (depending on if he’s already asleep), hearing various environmental sounds (the furnace running, rain outside)…to hearing nothing. Even my tinnitus is pretty much silent…I might get a soft little sound here and there but it’s nothing compared to the loud cacophony I dealt with before my CIs were activated.
Once my CIs are off, I’m back to wondering how loud I’m talking, lip reading Dave, feeling the cats to see if they are purring. It makes pillow talk pretty much impossible. There’s no conversation after we turn the lights out, and if I want to talk to Dave at this point I have to make sure the light is on and I wear my glasses so I can lip read him. If I take off my glasses to read before bed, all I see past the inch or so in front of my face is blurred colors.
Complicating matters is the fact that Dave also has a hearing loss. (This is a post I’ve been composing in my head for a while – the difference between being in a relationship where both people have hearing loss versus one where one partner hears fine and the other has a hearing loss, since I’ve experienced both.) He’s got his hearing aid out, so I have to hope I’m talking loud enough for him to hear me. Because of this, we don’t usually have in-bed conversations that we don’t want Paige to overhear. Unlike us, she has natural super-hearing and seems to hear everything, even behind closed doors. If we mention her name at all in conversation, we’ll hear her yelling out (from wherever she is in the house), “I can hear you!”
I’ve always been a little sad that we’ve never been able to whisper to each other in the dark and just quietly converse late at night. Even before I went deaf it was difficult to talk with the lights out, unless we were both pretty much yelling (not very romantic). Now though, it’s not even an option.
On the bright side, it’s pretty awesome to go to sleep and never hear snoring, the sounds of the dog snuffling and licking, birds outside (which, let’s face it, are not fun to listen to when you’re trying to sleep in the morning). I always have total silence when I sleep, barring some minor tinnitus when I’m first waiting to drift off.
Of course, I can’t listen to music to soothe myself to sleep (something I used to do when I was younger), and I can’t hear the smoke detector if it goes off. I can’t hear the phone or the doorbell, so if somebody calls or comes by, I have no idea. Well, I do have a dog! If I’m sleeping lightly, I wake up when Toby jumps up and starts barking if we have a visitor, because I can feel him bouncing around on the bed. He doesn’t bark for the phone, but then again, I don’t use the phone so I really don’t care if it rings.
I was trying to decide which I prefer…the total silence that I have at bedtime, or would I prefer to be able to hear? I’ve never had good/perfect hearing at bedtime anyway, but for most of my life I was able to hear somewhat. Even though it’s a little nerve-wracking that I can’t hear if there’s an emergency of some kind, I still think I actually prefer my total silence at night.
I’m sitting here listening to a THUNDERSTORM. I’m not standing up against the storm door with my palms to the glass, trying to feel the thunder. I can hear it!! I can hear the rain. I can tell when it’s pouring down and when it slows to a light downfall.
I probably shouldn’t even be on the computer (this is a major thunderstorm here!) but wow…it’s so exciting!
Okay, there was just a HUGE crash of thunder so I better sign off. But I heard it!! Yay!!
One year ago today I saw the doctor and it was confirmed: I was profoundly deaf in both ears. I consider yesterday, April 15, to actually be the ‘anniversary’ of my going deaf because I knew my hearing was totally gone on that day. I just happened to have the doctor appointment on the 16th.
You know that feeling of waiting for the other shoe to drop? Kind of a vague fear of a future catastrophe…not that you want it to happen, of course, but feeling like you just know it will happen someday? For me, it was going deaf. For 15 years I had this very repressed, subliminal fear that I would lose all of my hearing…and then what would I do?
Although I’ve lived with hearing loss pretty much all of my life, my hearing was stable from the time my loss was detected, at age 4, until 1993, when I was 28 years old. I was so used to it, and wore the same hearing aids for so many years, that I didn’t even really notice it. It never occurred to me that my hearing might get worse. We had no idea why I lost my hearing to begin with but it was assumed that it was from a high fever when I had roseola as a toddler. I figured it was a one-time shot and never gave it another thought.
Then in 1993 I suddenly lost the little bit of hearing I had left in my right ear. It was shocking and unexpected. Although I already had a severe-to-profound loss in that ear (so it wasn’t like I lost a ton of hearing) it was still an earth-shattering event for me because that was the ear in which I wore my hearing aid. My left ear was considered good enough, with a moderate loss, to not need amplification.
In one fell swoop I was faced with the fact that my hearing loss was possibly progressive and might get worse in the future, and dealing with suddenly only having one ear to hear with since I had no ear mold or hearing aid for my left ear. It took a good two weeks to get a new ear mold made for that ear and to be fitted for a completely new hearing aid, a bi-CROS system. During that two weeks I actually tried to squish the old ear mold into my left ear and wear my current hearing aid, so that I could hear at work and during social events. (I specifically remember a baby shower I attended for my cousin during that time, and how isolated I felt because I had no idea what anyone at my table was saying.)
Once I tried the new bi-CROS hearing aids, though, I was amazed. The transmitter I wore on my ‘dead’ right ear transmitted sounds via radio frequency over to the receiver I wore on my left ear. Once again I had the sensation of hearing from both ears, and my world normalized again.
The first couple of months after I lost my hearing the first time were scary for me because nobody could tell me why it had happened. I wasn’t sick and had no warning signs. They did a CAT scan and blood tests, tried me on a regimen of steroids to alleviate any possible swelling that would’ve caused the hearing loss…nothing worked and no causes were found.
After a couple of months passed and my hearing stayed the same, I stopped actively worrying that I would lose more hearing. The fear sank to the far recesses of my brain and remained there. Every now and then I would bring it out and toy with it: How would I deal with further hearing loss? Would I feel like life wasn’t worth living? Would I become bitter and nasty to my friends and family? Would I retreat and become a recluse?
At the time, I didn’t know anything about cochlear implants. I learned about them in the late 1990s and even then, it seemed like they were only an option for people with no hearing at all. From what I could tell, they would enable a profoundly deaf person to perhaps hear some loud environmental sounds but that was it.
Life went on and then the other shoe dropped.
In a way, there was a weird sort of relief that this had happened and I survived it better than I ever expected to. I look back and say, “Oh! I went deaf and actually dealt with it better than I thought I would.” It’s over now…I can’t get any more deaf than I am, right?
I do still have this little fear that something might happen to my implants so they don’t work anymore. Becoming deaf as an adult is totally different from growing up in a community of deaf people who use sign language. Since my world is a hearing world, I have to adapt to that. Dave and I have a version of sign language that we use and it works for us, but it’s not ASL. I can’t benefit from a sign language interpreter, for instance.
For now, all I can do is assume things will continue the way they are and my cochlear implants will continue to work for me.
The past couple months have been mainly focused on medical visits. At the end of January, I finally got an eye exam. That was one of the things I refused to do after I went totally deaf, because I didn’t think I could handle lip reading in a dark room with my contacts out. My vision is really bad so without contacts, I can only see things that are about an inch in front of my face. I’d basically be French kissing my optometrist if I was close enough to read his lips without my contacts in.
So! Fast forward a bit, the cochlear implants are working marvelously and I’m having more and more of a difficult time reading small print with my 44 year old eyes. Time for that eye exam!
I’ve been wearing contacts since I was about 12 years old, starting with the hard kind. I switched to soft contacts when I was 18 and could afford to pay for them myself (since they were much more expensive back then). Ever since, I’ve worn the same kind of soft contact lenses, the kind where they come in a glass vial and you wear them for about a year. When disposables came along they just kind of seemed like a silly extra expense.
Now, however, it’s getting more and more difficult to find the lenses you wear for a year. Disposable contacts are pretty much the most common ones out there, and that’s what I ended up with after my visit in January. I’m still trying to get used to throwing them away, which just feels wrong to me. I spent so many years being super-careful about NOT throwing my contacts away, or flushing them down the drain, or whatever…it is really strange to just toss them in the trash after a couple of weeks!
The eye exam itself was much easier than I expected. I told my doctor about my hearing loss – it was my first visit, so he didn’t have any kind of prior history on me. When I tell people about my hearing now, I say “I’m deaf, but I hear with cochlear implants”. Surprisingly, a lot of people know what I mean without further explanation. (I always like showing people my CI processors and explaining how they work though.)
I explained to the doctor that I lip read, so he did actually stay really close to me once my contacts were out and the lights were dimmed for my exam. That was a little funny, having someone in my personal space, but it was also extremely helpful because I never had a problem understanding him. All of the “Better or worse? This one or that one?” questions were pretty predictable and not a problem for me. He was a pretty talkative doctor though so the biggest challenge was the small talk, but it put me at ease and he was understanding if I needed him to repeat himself.
So I survived my first eye exam as a dear/cochlear implant gal, and now I use disposable contacts along with a pair of BIFOCAL glasses when I’m not wearing my contacts (early morning/late night). I officially feel my age! I also have a trusty pair of reading glasses that I use more and more during the day, when I have my contacts in.
After my eye exam, in late February, Dave went for his “I’m over 50 now” obligatory colonoscopy at the VA hospital. That was quite an experience for him, one he promises he will NEVER repeat, LOL. He had two huge boxes full of preparatory pills, liquid and powder, plus instructions on how to prepare the day before the exam. Anyone who’s had a colonoscopy knows what I’m referring to here…you have to fast the day before, on a clear liquid diet, plus take all kinds of laxatives to clean your system out before the actual exam.
Poor, poor Dave. I felt so sorry for him. He started his morning, at 7:30 am, with 10 or 12 laxative tablets. Once those hit, he was totally nauseated along with the, um, expected result. I think those made him feel the worst, actually. Later in the morning he had to drink a bottle, maybe 10 oz?, of some kind of liquid. He did that, and then I mixed up this big gallon jug for him to start drinking later in the afternoon. The jug came with just powder in it, and we had to fill it with water, shake it up, and leave it in the fridge until 2:00. Then he had to drink 8 oz every 10 minutes until it was gone. Every 10 minutes I dutifully set a glass of this stuff in front of him, until nearly 5 pm. Then at 7 pm he had to drink another one of the (10 oz?) bottles.
In the meantime, he could have clear broth, Jell-O and popsicles. Now he won’t even look at Jell-O…and I don’t blame him!
He said that day was the worst day of his life, even worse than when he had chemo before his bone marrow transplant. It really makes me look forward to when I turn 50 and have to go through this!
The exam itself wasn’t even a big deal, and he came through with a clean bill of health. I spent the morning in the hospital waiting room, testing out my ears. It was pretty amazing the things I could hear, and how much more relaxed I am now in a waiting room. Instead of sitting, tense, watching every movement to see if our names are being called, I can relax, read, whatever. In fact, when they first called Dave back, he didn’t even look up…he had no idea they called his name. I tapped his arm and told him I thought they were calling him – I wasn’t positive, but I was pretty sure I’d heard his name being called. And sure enough, it was!
After Dave’s hospital visit, it was my mom’s turn. She’d been having trouble breathing for a couple months and it was getting worse. In a stroke of good timing, the doctor she sees for her defibrillator checkups told her that she should really be seeing a cardiologist (she had a heart attack in 1999, which is when they gave her the defibrillator). So she saw the cardiologist, who ordered a stress test. That prompted him to order an angiogram, and during that she had 4 stents placed in one of her arteries because it was blocked.
After the angiogram, though, she was still having trouble breathing. She made an appointment with a pulmonologist, who gave her some tests for lung function and diagnosed her with COPD and asthma. This really freaked my mom out; she’s 70 and really takes pride in being very active. She eats well, stopped smoking 30 years ago, and walks anywhere from 3-5 miles most days. To get a diagnosis like that really depressed her.
Well, after that she just went downhill. The inhalers that she got were making her jittery and lightheaded, and she was still having trouble breathing. One morning in late February she called and asked us to take her to the emergency room. She was just distraught, crying and panicked. I was really glad that we live so close by (just a 5 minute drive) so we could be there with her, and my CIs helped me understand everything the hospital personnel said to her. Dave and I stayed with her until it was time for Paige to get home from school; at that point they had done a bunch of blood tests, a CAT scan and an ultrasound.
This was all in the emergency room, in a big room where there were curtains pulled around to make a little room within the big room for each patient. I could actually hear them talking to the person next to us, asking if she knew where she was, what year it was, etc. I mentioned to my mom (later on, after we left) that I could hear them and she confirmed that yes, it was a patient they suspected had Alzheimer’s. Again, a really weird experience with the inadvertent eavesdropping!
One thing I really puzzled over, though, was the announcements. One was obviously a computer, not a person, and it was accompanied by these horrible bleats of something that sounded like an air horn. I just couldn’t figure out what they were saying. Finally I asked my mom and it was something like “Code Red, Building North, First Floor”. Over and over and over. Once I knew what was being said it made total sense to me but it’s a good thing I don’t work in a hospital because I wouldn’t be responding to any loudspeaker announcements!
Anyway, we came home, got Paige and went back to the ER only to see my mom in the waiting room…they had released her with a diagnosis of anxiety and a prescription for Xanax. Over the next month she had two more ER visits, with one resulting in an admission (and no real diagnosis that we heard). It was starting to get frustrating, as she saw more and more doctors and kept saying that nothing was helping. She was getting despondent, wanting to just give up, and we just felt helpless to do anything for her. One doctor said she had COPD/emphysema, one said if she had COPD at all it was very mild. She just hated the inhalers and was having trouble sleeping, plus she was really depressed. I get my worrying and anxiety from my mom, and anxiety was definitely playing a part in her health issues.
Finally, she saw a doctor who felt her issues stemmed more from depression and that her COPD was actually very mild. He prescribed an antidepressant, which I really felt my mom needed. Initially, though, she refused to take it. There were so many warnings on the package and so many potential side effects, she just couldn’t bring herself to do it. We talked to her about it and she finally decided to give them a chance (she breaks them in half) and now she’s like a new person. She admitted that the biggest problem for her was that she was in denial about the COPD diagnosis…I think she was hoping to find a doctor who would say she didn’t have it, and give her a miracle pill that would make her all better. Now though, her attitude is better (much more positive) and she isn’t panicking, which definitely helps her breathing.
There’s been a huge difference, dealing with medical stuff as a person who can hear (thanks to cochlear implants) versus being totally deaf, like I was when I had my pre-op tests and going in for the surgery itself. I mean, any medical situation is nerve-wracking in and of itself (for me, anyway) and when you add in the possibility of missing most of what’s being said, it just makes the whole situation even more stressful. I had such a calm feeling of being in control in all of these situations…eye exam, hospital visit with Dave, ER visits with mom…and what a difference it makes! For once I can forget about myself and really be present for the issue at hand.
The final hurdle I have to jump is a dental visit. I haven’t had a cleaning since late 2007. I was actually scheduled for a cleaning in mid-April last year, just 2 days after I went deaf. I went on April 16 to see Dr. Battista and that was the day I was officially declared profoundly deaf in both ears. By that time I was hearing nothing at all. My dental appointment was on Friday of that same week, and I had Dave call to cancel it. Dental visits are hard enough, with those masks over their face so I can’t lip read. I couldn’t imagine doing it without being able to hear at all.
Then we cancelled our dental insurance (can’t afford it) so now I’m kind of like, eh…my teeth feel fine, and I’d have to go to this new dentist (who takes the dental discount plan we now have…not insurance, but at least it’s something). They’ll need x-rays and a new patient exam as well as the cleaning, and that’s SO much money. Blah. I’ll go sometime this year (probably when I schedule Paige for her 6 month cleaning) but I’m kind of dreading it. I wonder if my processors and/or headpieces will fall off when they recline the chair? Hmmm.
Hopefully we won’t have any more medical situations this year…I think I’ve had my fill of hospitals for a while!