I gotta have some of your attention…

I’m engrossed in whatever I’m doing…dishes, typing, reading, sewing. Totally focused, listening to whatever weird thing my tinnitus is doing at the moment (Pipe organ! Roaring ocean! Revving motorcycles!). Suddenly there’s a tap on my shoulder and I shriek, peel myself off the ceiling.

Sometimes I feel like being deaf is going to give me a heart attack.

Seriously though, it’s very strange not being able to just hear my name and respond. My family has to go the extra mile to get my attention now. They have to walk up to me and tap me (and scare me half to death), or do an interpretive dance from across the room…waving their arms, waggling their eyebrows and fingers, until I notice the motion and glance over.

Let’s not even talk about what the cats do to me. We have five cats. Three are former ferals and aren’t yet to the point where they are lap cats (we can’t even pick them up) although they do come up and rub against our legs. However, my other two cats are very affectionate. More than once I’ve been totally engrossed at the sewing machine and felt something grab my thigh. It’s even more terrifying because my thigh is the last place I expect to be grabbed or tapped! Inevitably I look down and see a cat hanging off my leg, looking for attention. Before I lost my hearing I always had some warning because they usually meow for a while first. It’s only if I’m ignoring them that they become more aggressive and start grabbing at me with their paws. I told Sabrina, our black fluffball, that I was going to give her a collar with a flashing strobe light on it. Forget the bells (they’re indoor cats anyway so birds don’t need to be warned)…I need a visual indicator that I’m about to be affectionately assaulted by my felines!

I’ve been thinking about setting up a mirror to the side of my computer monitor, so I can tell when someone’s coming up behind me. Sometimes I get a reflection off the printer or my water glass and the movement will make me turn to look. But it gets a little exhausting constantly looking around, checking to see if anybody is trying to get my attention.

I find myself making sure I don’t turn my back to people, if I can help it. If I’m cooking, I’ll do my prep work on our stove top with my back to the patio door. That gives me a full view of the kitchen and there’s no reason anybody would be behind me. No more cutting vegetables at the sink for me!

On a totally unrelated note, I find myself missing music more than I expected to. Whenever I try to think of a title for a journal entry lately, it seems to be a song title or lyrics. The funny thing is, although I listened to music avidly as a kid, teen and young adult, once Dave and I got together (I was in my 30s) I pretty much stopped listening to music. Since he’s got a hearing loss, it was just too hard to converse with music in the background. We’d have to turn it down so low that I couldn’t hear it anyway. Plus, the kids were young and I didn’t want to wear headphones because I wouldn’t be able to hear if they were crying or needed me. Even in the car we rarely played music, again because it was too hard to converse. (We also almost never drive around with the windows rolled down – the background noise makes a conversation impossible. As soon as spring rolls around, we’ve got the air conditioning on in the car and the windows rolled up!)

Yet, I find myself “hearing” certain songs over and over in my head. I make up new arrangements for them too. It’s very strange! I went through a phase where I just kept hearing Beatles songs. I’m not even a big fan of the Beatles but my dad was, and I realized I was hearing the songs I was used to hearing all the time as a kid. Same with the soundtrack for Jesus Christ Superstar, which my dad listened to frequently (and I liked it so much that I got my own copy).

In fact, a lot of the songs that pop into my head are from my childhood. ‘One Bad Apple’ by the Osmonds (yes, I loved Donny Osmond), the soundtrack to Jonathan Livingston Seagull (specifically ‘Lonely Looking Sky’), and from my late teens, ‘Puttin’ on the Ritz’ (the version by Taco). That last song pops into my head all the time…it’s not even a song I was particularly fond of! Crazy!

Hurdles: Facing Them, Jumping Them

We went over to my mom’s house on Mother’s Day. It’s kind of funny, this ‘holiday’. On the one hand, I’m a mom so in the back of my mind I feel like it’s my day to be pampered. On the other hand, I don’t want to ignore my own mother so of course I always end up getting together with her too.

My family did a really nice thing for me – I got a membership in the Hearing Loss Association of America. It’s something I’ve been meaning to do for the past month!

The past couple of years we’ve gone out to breakfast for Mother’s Day, which was hit or miss depending on how busy the restaurants were. This year we just stayed in; my mom cooked and I did the dishes (with Dave helping). I was pretty nervous about this visit because I haven’t gone to any social events/family gatherings since I lost my hearing. I had no idea what to expect, whether I’d be totally lost and frustrated or whether I’d just kind of withdraw into my own little corner.

My brother, his wife and their baby boy weren’t there (they have all been fighting illnesses the past week) so it was just me, Dave, Raven, Eric, my mom and her boyfriend Pete. It ended up being just fine. Pete was the hardest for me to lip read because I haven’t talked to him as much as I have everyone else, but by the end of the evening it was much easier.

Dinner was the hardest – it was hard to lip read Dave because he was right next to me (on my left), and if he turned to talk to people on his left then I could barely see his face. There was really no good place for me to sit where I could see everyone at all times, so I would periodically have to ask him to fill me in when he was done talking. If anybody was talking while they were eating, it was obviously a lot more difficult to understand them. But all in all, I was really pleased at how the evening went.

We have a couple of big events coming up here…Raven graduates 8th grade and Eric graduates high school, both the first week of June. I didn’t think to request CART until a couple of days ago. The high school principal already wrote back and said there probably wasn’t enough time to get CART arranged for the ceremony but they could seat us in the front. We need to get there early. He did say “you and your husband” even though I explained that Raven and my mom would also be there…I’m not sure if that was an oversight or if they really would try to separate us when we’re seated. I’m just planning to have all 4 of us present ourselves to the principal for our special seating, and if he wants to argue with us, he will have to deal with my mom.

I haven’t heard back from Raven’s school yet but she already asked and pretty much got the same answer I got from the high school – doubtful for CART but no problem to have seats in the front. That’s good enough for me. If I’d had more time, I would have asked sooner and fought more for CART but I’ve actually never used CART before and I’m a little clueless about it myself. We’ve got so much going on right now that I just don’t feel like fighting with the schools…I can only deal with so much at once.

Then we have Eric’s college orientation day in the middle of June. I wrote and asked them about accommodations but since I don’t sign, they didn’t really have much to offer. It’s a situation where we’re moving from room to room, listening to different speakers and seeing different parts of campus, then reuniting with our kids for lunch, etc. I don’t even see how they could provide CART in a situation like that anyway, so for that I’ll just be relying on Dave to pass on information to me, plus I’ll read over the handouts that they give us.

Raven will have high school orientation in the middle of August. Luckily I’m used to how this goes because I’ve done it before with Eric, and I already know the high school well.

You know, we have this button that says “I read lips” from the Say What Club, but I’m not much of a button-wearer. Maybe I should make some kind of cool t-shirt (or find one, if they exist) that says that I’m deaf and read lips, so please face me.

Or maybe I could just cut out big circles with slashes through them and tape them over my ears!

The CI Assessment

For some reason, I’m nervous this time. I guess it’s because I really don’t know what to expect from a CI evaluation. I’m not sure who will be there, what they’ll ask, what tests they’ll do. Will a psychologist evaluate me? How long will the hearing tests be?

I’ve always hated hearing exams and eye exams. I feel like I’m failing them. My eyesight is bad (-9.0 in both eyes, nearsighted) but it’s been stable for a long time. Still though, hearing tests are worse because at least with an eye exam you eventually get to a point where you can see the chart and you feel like you’ve succeeded. There’s never success for me with a hearing test!

We go into the office and wait for a while in the waiting room. There’s just one other couple there, and when someone comes out to get them and they both stand up, I realize the woman has an Advanced Bionics CI. The lady who greets them gives the woman a big hug and shakes the man’s hand. I wonder who she is…maybe the woman’s audiologist?

The lady who comes to get me is a new face – she’s not someone I’ve seen before. (My other two hearing tests were each administered by a different audiologist.) She has a younger woman with her, probably in her twenties. I don’t catch her name but I think she’s in training. My audiologist, Kathy (or Kathleen – that’s how it’s listed in her email but I think she introduced herself as Kathy) seems to be about my age or a bit younger. It’s still a little weird for me to have doctors and other medical professionals who are younger than me!

She brings me and Dave back to a room, we all have a seat and begin to talk. I’m relieved that she’s easy to lip-read. I realize I’ve been pretty nervous about the fact that this visit is so information-packed and it’s really not information that I want to miss. I wasn’t sure how much I’d really catch, doing 100% lip reading. The hardest part is probably when she’s explaining how the CI works, flipping through a book with diagrams. I have to look at her lips to understand what she’s saying, but then I can’t really look at where she’s pointing to or examine the diagram very much. Luckily I feel pretty well-versed already in how the CI works from the research I’ve been doing.

The first thing Kathy asks is about my recent hearing loss – was it very sudden, what exactly happened? We then talk about the initial cause of my hearing loss (which isn’t known) and my theory that it may be genetic rather than caused by the high fever I had as a toddler with roseola. Kathy points out that it could be a combination of the fever and a genetic factor. I ask about erythromycin, because I’ve read that it is ototoxic. I’m allergic to penicillin and that’s the only medication I ever took as a kid and young adult. However, I would have had to have been taking some pretty high doses for a long time, apparently, and that’s not the case.

After this short discussion, they ask if I’ve gotten new hearing aids since my most recent loss. I tell them no; ironically, I had been considering buying new hearing aids this year since the pair I’m wearing are 15 years old and starting to fall apart. I was hesitating because of the high cost…now I’m really, really glad I didn’t spend $5,000 or more on a new pair of hearing aids just to go deaf a couple of months later. LOL!

So they tell me they’re going provide the strongest hearing aids available for me to use during the upcoming hearing test. I get a little excited – cool! I wonder if I’ll be able to hear anything with these? If I do, I wonder if I’ll get to keep them for a while…kind of a trial basis thing or something. They go in and out of the room with the aids, which are gray and much slimmer than my beige Beltones, but still behind-the-ear style. I give them my hearing aids and they put the new hearing aids on with my ear molds. They put the left one in my ear and turn it on and…oh my gosh. My whole head is vibrating. It feels like my eyes are spinning around in my head. I don’t hear anything, it’s just this head-shattering vibrating. I say, “Woah!” and they look concerned right away. They ask what’s wrong and I explain to them what it feels like. I’m starting to feel nauseated from the dizziness. I guess there’s major feedback from the hearing aid, so they quickly remove it and use these foam ear pieces instead of my ear molds. They squeeze them and stick them in my ears, then try the hearing aids again. Same result.

More going back and forth from the room for a while, then they apologize and say that they know it’s uncomfortable, but they have to do the test with the hearing aids. They promise me they will try not to talk very much, and ask if I can just hang in there for the test. Of course I say okay – I’m the most non-confrontational person you’ll ever meet! It’s a little better and at least I can walk without feeling like I’m spinning around. I think they’ve lowered the volume a bit. I just have to close my eyes when someone talks and my head starts to vibrate.

The hearing test is the usual – I’m in a booth, and I’m told to squeeze the button when I hear anything. Then I’ll hear a man’s voice reciting words; just say whatever I think the word is, if I hear anything at all. I ask what to do if I just feel the vibration instead of hearing it. They tell me to just let them know that I can feel it. Well, that ends up being really annoying. I wish I’d had one button to push if I heard the sound and one to push if I just felt the vibration. It turns out that I don’t hear anything, although I do push the button twice for my right ear. It’s hard to tell if I’m hearing or my head is just vibrating so much that I think I’m hearing something. For all of the other things I can sense, I end up saying “I feel that.” Every time I say this, my head is shattering from the vibration in the hearing aids. It’s exhausting and frustrating.

I can tell when the word recognition part starts because instead of a short vibration, I get longer sentence-like vibrations. I have absolutely no idea what’s being said; I hear nothing. I just feel my head rattling around.

They do three tests: one with both hearing aids in, then one with just the left aid in and one with just the right aid in. Finally it’s over…thank God. I don’t think it took very long…it felt like 10 or 15 minutes to me but Dave said he thinks it was more like 20 to 25 minutes.

We all meet back in the room and Kathy tells me that yes, I would be a candidate for a cochlear implant. She says that my MRI didn’t show any problems; that my left side looked “a little better” than the right, although I didn’t catch what she meant by that. She talked a bit about the auditory nerve and I did have her repeat that to make sure I caught everything.

This was the point where she took out the binder and explained how the CI works. Then she pulled out a couple of briefcases and showed us the parts of the CI’s from each company that they work with: Cochlear and Advanced Bionics. I held each sound processor, tried it on my ear and played around with the controls. She showed us the actual implant – it was absolutely amazing how small the part that goes into the cochlea is! It was much, much smaller than I imagined. We got to hold the implant and marvel over it – Dave really liked that part. He’s much more ‘techie’ than I am!

Of course, Kathy was very neutral regarding the two companies and said they both have very good results. We talked about the meningitis vaccine and a little bit about the surgery. She went over the various accessories for each CI and showed me how the batteries come off and the different battery options for each brand. We talked a bit about expectations, and the mapping process after the CI is activated. I asked if I would be returning to that office for mappings and she said yes, which was good news since it’s not too far from our house. (It’s about a 30 to 45 minute drive, depending on traffic.)

We also talked about bilateral implants. I was surprised that this wasn’t something she strongly recommended; she seemed kind of laid back about it when we asked. She did say there were studies that showed a real benefit to bilateral implants and that I would definitely benefit since I can’t hear with a hearing aid in either ear. I think the simultaneous bilateral CI surgery is still kind of new and I suspect a lot of people don’t opt for it. I’m sure it’s harder to get insurance approval for it too. Still though, I’m used to the semblance of hearing from each ear since I was wearing bi-CROS hearing aids. If my aids needed repair and I had to just wear one in my “good” ear (in the past), it drove me crazy because the sound was all wrong and I really missed a lot. I’m assuming bilateral CI’s would give me the same “surround sound” effect so even with the extra recovery time, it’s still something I’m interested in if the insurance approves it.

The whole visit took about 2-1/2 hours and I came away from it feeling pretty good about things. Since I already have big information packets from each company, I didn’t get company-specific paperwork. I did get some forms though, explaining the meningitis vaccine, basics on what to expect from a CI, and the cost (good grief, it’s more than double what I thought it cost just for one CI…the thought of what it costs for two is kind of frightening).

Kathy gets my email address and tells me she’ll keep in touch via email, which I’m so grateful for. Right now I have Dave doing all the phone calls for me, which I’m sure he’s not crazy about (although he never complains). She says that the next step is for her to write a letter to the insurance company for the pre-approval. She’s going to go ahead and request bilateral implants. She tells us to find out who the contact person at the insurance company is and bug them.  This is not something I’m likely to do, being non-confrontational like I am, but I’m also used to dealing with insurance companies since I did it for my job when I worked in Human Resources a number of years ago. I can do it if I have to!

After we get home, Kathy emails later in the afternoon and says the doctor would like me to come in for a visit so we can talk about the difference in recovery time, etc. for bilateral surgery. I have a lot of questions about the surgery for him anyway, so I’m kind of glad. We’re going for that appointment on May 16 (this coming Friday).

So now we wait for pre-approval and I have to make a decision on which company to go with. I have to thank everyone, once again, who replied on my earlier post. I know this is a really new blog and it isn’t very visible yet, so I wasn’t sure how much feedback I would get. I was pleasantly surprised! I’m so happy that you all took the time to write and give me your experience and thoughts on the CI’s that you have.

I think right now more than anything, I’m concerned about money. Since I pay for my own health insurance, I have a very high $5,000 deductible. I also just switched to this company this January (my other company was raising the monthly premium again and it was just becoming unaffordable). So here I am, a new member of just 5 months and I’m requesting this majorly expensive surgery! I have no idea what to expect and whether they’ll approve it. Even if they do, our out-of-pocket expenses will be astronomical. And if I get two CI’s, I’ll have the cost of upkeep and, eventually, upgrades for two CI’s instead of one. On the other hand, if the bilateral surgery gets approved it seems stupid to pass it by just because it’s more expensive to have two CI’s versus one. I figure we’ll find a way to pay for it—we always do!

To look on the bright side, the company I switched to does often approve CI’s. And at least I have insurance – I had been very tempted to just go without health insurance for a while to save money on the monthly premiums. I am really glad I didn’t end up doing that!! I know I’m lucky to even be in a position to consider getting CI’s so I’m not going to complain.

Finally, my last concern is that I’m going to have really bad vertigo if I have bilateral surgery. I’ll have to ask the doctor if that’s more of a possibility when you do both ears at once. I guess if I do, at least we have a cane I can use. Dave has one and he sometimes uses it at night since his vestibular system was destroyed when he had leukemia. If anyone can teach me to overcome vertigo, it’s Dave! It took him two years, but he went from not being able to walk in a straight line (he would just spin in circles, and have to creep along holding the wall with both hands) to being able to walk with just a slight wobble now and then. He amazes me!

One of these days, I’ll write more about Dave and how we met. For now, I’m finally going to bed.

Gimme one reason

I’m working on a long post about my CI evaluation (in short: good news, I qualify!) but in the meantime…if anyone has any insights, good or bad, to share about the CI company they went with, factors they wish they had considered or what has turned out to be the most important thing to you, and especially if you have upgraded your processor and how that went…please share them in the comments!

I’m now at the point where I have to choose a company and it’s making me crazy.

Originally I was leaning towards Advanced Bionics. I like the accessories they have, the look of the processor, and they sound like they’re doing a lot of work toward future upgrades. However, I took a peek at their website regarding upgrades to their newest processor for people who have older models. It really concerns me that people with models as recent as 2001 can’t upgrade (yet). I realize they are working on an upgrade for those folks, but the FAQ they provided made it sound like the upgrade wouldn’t really be much different sound-wise than what they already have.

I don’t want to be in that position 7 years from now.

Cochlear seems to have a really good track record for backwards compatibility. I’ve read more than once that people who received their implants 20 years ago can use the current technology. That is really important to me.

So both companies have benefits, it seems. I know that I’ve read stories from people who have implants both from AB and from Cochlear and they all seem thrilled with what they’ve got. I don’t have too much doubt that whatever company I go with, I’ll be happy with the immediate results. I’m just looking down the road to when I don’t have the newest and greatest processor on the market.

I also have to make a decision on simultaneous bilateral CI’s because that’s what they are recommending for me. I’m not sure the insurance company will approve it but I do have to go in for another visit with the doctor, so he can explain the recovery period and the differences between surgery for one ear and surgery on both at the same time. If anyone has had simultaneous bilateral surgery and would like to share their experience, I’m all ears! (pun intended)

I’ll be back with a longer post soon, but in the meantime…help! Someone make this decision for me!

Acceptance

“Is this it?”, I wonder, “Have I just accepted it now? I’m not going to freak out, break down, be incapacitated with grief?”

I go through each day and do what I normally did. Nothing has changed, except I can’t hear. I still make dinner, do dishes, watch TV, joke with my family.

Am I really that strong that I just accepted this huge change in my life with grace? I go to doctor’s appointments and see the sadness in their eyes, and I want to say, “You have NO IDEA what this has been like. I look like I’m just taking it in stride but oh my GOD, I can’t hear!”

And I am not alone. So many other people have had this exact experience and they just go along, do what needs to be done. It’s amazing to me, the ability to adapt without missing a beat.

I had one big cry, the morning I realized my hearing was really, really bad. I wailed and sobbed, I told Dave I didn’t want to be deaf, I didn’t want to not hear his voice any more. As I cried I was thinking, “Well. I’m being a little dramatic here…I’m sure my hearing will get better and I’ll be embarrassed that I overreacted.” At that point, I had no idea that my hearing would totally abandon me. It felt good to cry, though, because I really was scared, terrified.

And then it happened, my hearing left me and … nothing. No more crying, no more feeling sorry for myself, no more wondering, “Why me?”

In one week, I will have been deaf for one month. A month! I can’t believe it’s nearly been a month. I looked at my audiograms today. My speech recognition in my left ear used to be 92%. Now for both ears it is NR – no response. I mean, I don’t hear anything at all. It still seems hard to comprehend.

So I wonder…am I just this amazingly strong person? I don’t think I am. I know a lot of people who’ve dealt with this kind of hearing loss and just went on with their life. Or maybe it’s the fact that we all dealt with it in a similar way, by looking for support (online mailing lists and bulletin boards). Maybe there’s a whole bunch of people out there who are not dealing with it, but they’re alone in their grief.

I can only speak for myself. I know that a major, major factor in my attitude is my family and their support. I am so lucky. My husband is my best friend and we spend all day, every day together. He never loses patience with me and he does everything he can to find ways to make communication easier. My kids treat me no differently – they still talk to me, tell me about their days at school. They make more of an effort to enunciate and, in Raven’s case, to talk a little slower (teenage girls can talk a mile a minute!) My mom makes an effort to stop by every other day or so, just to talk for a few minutes, give me a hug, fill me in on what’s happening in her life. My brother emails me at least 4 or 5 times a week – I probably talk more now to my family than I ever did!

I feel surrounded by love and by people who care about me. It would be a very different life if I felt like everyone was perpetually annoyed by how difficult it was to communicate with me now.

My biggest fear was being told “It’s not important, just forget it” if I didn’t catch something the first one or two times. To my family’s credit, they’ve never done that to me. They might have to pick up a notebook and jot down a word to help me out, but they do it without exasperation.

I did make a conscious effort to be the kind of person people enjoy being around. Positive, not reclusive. I mean, really – who wants to spend much time with someone who complains all the time? As Pollyanna as it sounds, I really did look on the bright side. This isn’t fatal. I can still move around, do what I want to do … I just can’t hear. It’s a huge change, but it’s not the end of the world.

I guess that attitude becomes a habit. If I woke up every day with dread, I probably couldn’t get through the day. And I don’t feel like there’s a reason to dwell on my recent hearing loss. It happened. And now life goes on.

Still though, really? I’m deaf, and it’s been a month, and the world hasn’t ended? I go through my day just like before, except now I do it with an endless cacophony in my head, a deafening absence of sound…and yet it’s nothing but sound, constant noise.

I go downstairs, rifle through the kids’ school supplies, find a lime green folder. This is my new CI folder.

Just like fall always felt like a new adventure, starting a new school year, this will be another new adventure. My road to (hopefully) hearing with a CI.

I’m smiling.

Enjoy the silence

Oooh. I’ve just discovered my first benefit to being deaf. I opened a can of refrigerator biscuits last night and for the first time, I didn’t shriek in horror when it popped open!

I did feel the vibration and thought that might scare me just as much, but apparently without that loud POP as the can bursts open it’s just not as frightening.

Not that I go around opening biscuit tins all the time, but it’s kinda cool not to have to squinch my eyes shut, turn my face away and hold my breath every time I open one.

P.S. Yes, I love Depeche Mode. I’ve been waiting for a post that would fit that song title!

Making Life Easier

So, you’ve just recently lost your hearing as an adult who’s spent all their time in a hearing world. Now what?

As I mentioned before, nobody came forth with a list of sources for me when I visited the doctor. It’s really been up to me to do the research and found out what I can do to make my life easier, to make communication less difficult and to keep myself safe.

When I realized my hearing loss was permanent, the first thing I did was turn to the internet. It’s been a lot easier this time around than when I lost my hearing the first time (in 1993) because of the ease of accessing information online. Back then, I was on Prodigy and it was mostly bulletin boards. You really didn’t go to various websites on the internet the way we do now. I had a lot of support from my friends on Prodigy’s bulletin boards but if I really needed information, I went to the library.

The first thing I checked out this time around was a TTY. A while back, 6 months or more, a friend of mine mentioned that she used a CapTel phone. I had never heard of it so I did a search online and found out that ITAC (Illinois Telecommunications Access Corp.) offers them for free to Illinois residents that submit an application and a certification from a doctor or audiologist that you are hearing impaired. This was all new to me! We planned to get a CapTel phone since Dave had the same trouble that I did on the phone. As I mentioned before, though, we just never got around to having an audiologist fill out the certification form. I went back to the ITAC website and saw that they also offered TTY’s. Since I can’t hear myself talking, which is really weird for me, and since I’m a fast typist, I decided I’d prefer to get a TTY. I brought the papers with to my first doctor’s appointment, got them filled out and mailed them that same day when I got home.

Within a week we received a brand new TTY direct from the manufacturer. It’s sitting here right next to the phone right now. The only thing is, we haven’t figured out how receive a phone call with it yet! My mom tried calling through the relay service but Raven answered the phone and had no idea what to do. The TTY is hooked up to a phone line but we have our regular phone hooked up as well because the kids are using it. We’ve used the TTY with the relay service to call family members, and that’s worked perfectly. We’re still getting used to the protocol and still trying to figure out how it all works. It came with a manual but the manual assumes you already know the basics of TTY usage.

The relay service is also something I just discovered. Dial 711 and you reach the relay service, and it’s free – how cool is that? I told my mom about it and that’s how she managed to call us the one time. As far as I can tell, if that happens again we just place the receiver on the TTY and turn the TTY on. We were confused because the TTY is hooked up to a phone line so we assumed the calls would just come directly in to the TTY!

A couple of days later, we received a telephone signaler in the mail (from a different company). I was a little baffled but realized from the paperwork included that it was part of the TTY package. It was so unexpected that I almost started crying – what a really nice thing for them to do. We debated where to put the signaler, which would flash a light when the phone rang. There are no lamps near any of our telephones, just overhead lights. We didn’t want to put it in the bedroom because we’re only in there at night to sleep, and flashing lights do not wake me up. Dave ended up rigging a little lamp by using a light bulb and a fuschia-colored hurricane lamp we were using as a candle holder. It’s situated above our desks and is visible from the kitchen, dining room and living room. It’s unbelievable how much light it gives off when it’s flashing! In fact, this morning I was in the kitchen with my back turned, doing dishes, when I saw the light reflecting in the oven door next to me. I turned around, checked the caller ID on the phone and saw that the call came from my son’s friend’s house.

Which brings me to the next helpful accommodation: text messaging. Since we both hate the telephone so much, we were very late to jump on the cell phone bandwagon. We got a pay-as-you-go phone from Virgin Mobile a couple of years ago and just never used it. It was for emergencies only – to use if our car broke down or if we got in an accident. We could barely hear on it with our hearing aids.

This past week, Dave has been exploring cell phones for text messaging, as well as things like the UbiDuo and Interpretype. Unfortunately, those last two are well out of our budget right now. Dave was playing around with our phone’s text message function and realized how truly difficult it was to type something with it. We ended up upgrading our phone to the kind with a little keypad, which makes typing a text message 100% easier. It’s also rated M4 and T3 and Dave has a much easier time hearing on this phone with his hearing aid. (The phone is a Kyocera Wild Card and we’ve been really happy with it.)

I also found out that I can send and receive text messages via the internet, so this morning I sent my son a text message from Virgin Mobile’s website. He texted back to my email address to let me know he was ready to be picked up from his friend’s. We moved our communication to the cell phones after that and I was able to tell him to wait for me outside, and then go pick him up.

I’ve also used the online relay service in the past, which is a really wonderful free service. I know they have an online CapTel relay service now as well, but we haven’t had a chance to try that yet (it’s something that would be really helpful for Dave).

My alarm clock situation hasn’t changed. Back in 1993 I got an alarm clock with a bed shaker, because I slept without my hearing aids and no matter how loud the alarm was, I didn’t hear it. (Plus, I didn’t want the alarm so loud that it would wake my kids up!) You can also have your lamp flash but as I said earlier, I just don’t wake up from a flashing lamp. The alarm itself also flashes a red light but I never even noticed that until one morning when I woke up before the alarm went off – that was the first time I ever realized the alarm had a light that flashed as well as shaking the bed.

As for the doorbell, we still have yet to buy anything for that. Right now I’m relying on Toby, our dog, to alert me. He barks whenever anybody walks by, but if somebody is at the door, he goes to the head of the stairs and barks like crazy. He’s also my smoke alarm alert for the moment – if the smoke alarm goes off, he goes crazy and comes right up to me, jumping on me and barking until I turn it off.

I would like to get an alert system for both of those things but I’m trying to find something affordable that will work for me. The smoke alarm thing has me puzzled because I would need an alert from any area of the house, not just the area where the smoke alarm is. So far all the fancy alert systems are hundreds of dollars and way too expensive for our budget.

The Illinois Assistive Technology Program has a loan program where you can request certain items and try them out free for four weeks. I submitted an application for a doorbell alert so if I like the one that they send, I’ll feel confident that it’s worth the money when I buy it.

As far as bad weather goes – and we do get a lot of tornado warnings here, as well as blizzards and severe thunderstorms – I’ve been using email alerts from the National Weather Service for the past year or so. Dave and I can’t hear the tornado sirens that our village uses, although if the kids are home they can usually hear them and will tell us. Since I’m online all the time for the candle business, I get the emergency emails quick enough to take cover if we need to.

We also get emails from the Emergency Email Network regarding Homeland Security and other national alerts.

Another kind of weird thing I discovered helps me is to touch the person who’s talking to me. Of course, I don’t do this with anyone other than my immediate family (!) but if I place my hand on Dave’s shoulder, near his neck, or on his neck itself, the vibrations I feel when he’s talking make it much, much easier to lip read and figure out what he’s saying. Raven actually gave me this idea because she mentioned that when she’s listening to music with headphones on and talking to somebody, she touches her throat to get an idea of how loud she’s talking. (This came up in a conversation when I was explaining that I have no idea how loud I’m talking – if I’m shouting or not. She suggested this and it really does help.)

That’s not really an object that accommodates me, but it sure is helpful!

Since we have a lot of animals – a dog and 5 cats — I find myself watching them for clues too. One of our cats, Sugar, is white and partially deaf. I can relate to him even more now, and I really understand why they told us (when we adopted him) that he has to live with one or more cats that have full hearing. Watching their reactions helps him react to things in his environment. I find myself using more hand movements with Sugar now. He’s the most interactive of all our cats – he really watches us and is very expressive…now I can understand better why he does that. Anyway, if I see the animals gathering around the head of the stairs, looking at the front door, I know somebody’s there. If they all turn and look in one direction, I look too (and usually somebody’s approaching). Sadly, I don’t react to the can opener the way they do.

Immobile

I scan the waiting room nervously, trying not to make eye contact with the receptionist. I’ve learned that making eye contact is a guaranteed way to get someone to talk to you, which is exactly what I don’t want. I move so that I’m behind Dave, letting him get the receptionist’s attention. Once they’re safely conversing, I feel able to watch her mouth and read her lips. I catch that she’s asking for my insurance card and driver’s license, so I’m able to start retrieving them before Dave turns to me to let me know.

I’m given a huge stack of forms to fill out. I sit down and flip through them, wondering if it’s just a pile of all the same form and maybe I just need to fill out the top one. Nope – they’re all for me. Sheesh! I start answering questions about piercings and possible bullets in my body, allergies and claustrophobia. Eight or nine pages later, I’m finally done. Now I wait.

After only five minutes or so, I see a young girl come into the room and say my name. Dave pops up and asks if he can come with me. I don’t really follow the conversation but I get the gist of it – there’s really not much he can do but stay in the waiting room. The part I’ve been most worried about – communicating with the MRI personnel without Dave there to fall back on if I don’t understand – is about to happen.

I explain to the girl that I’ve completely lost my hearing in the past couple of weeks and I’m relying solely on reading lips. She says, “You can’t hear at all?!” She’s very nice and easy to lip read, so I relax a little bit. We stop at a little room with lockers and a bench, and some blue scrubs on shelves. I’m told to change into the scrubs – leave on my underwear but take off my bra…I can leave my shoes on if I want. I laugh and tell her that I can’t take my pants off without taking off my shoes! (In retrospect, I wish I’d put my shoes back on because by the end of the MRI my feet were absolutely freezing.) She tells me to lock my clothes up and bring the key with me. When I’m done changing, take a seat in the little room outside and she’ll be back for me. I repeat everything she said, especially the part about keeping the key with me – really?! She explains that they have a place for me to leave the key in the MRI room.

I change quickly, and being a girl, I note that she handed me the size Medium scrubs. If I’d had to choose, I would’ve taken the size Large. However, the Medium fits and I’m strangely pleased by this.

I don’t have to wait long before she takes me into the MRI room. It’s overwhelming and a lot to take in – this huge machine! I leave my key on a chair and the doctor shows up. (I think he’s a doctor – if he introduces himself, I don’t catch it.) He talks faster than the girl/nurse and I’m a little lost, which panics me. I catch that he’s telling me I’m going to have an IV for the contrast, and I think he’s telling me some possible side effects after the IV starts, which he says are perfectly normal. I don’t even have time to react to this before I’m led to the machine and instructed to lie down.
Now, IV’s are not my friend. I have teeny tiny veins and phlebotomists cringe when they see my arms. I’ve actually had an experience where they just could not get an IV started (when I was dehydrated) and just gave me Sprite to drink to try to re-hydrate me. Needless to say, I was a little worried about this IV which I had no idea I was going to need. As soon as I laid down, the doctor took my arm, slapped it a couple of times and got the IV in with the first try. What a relief!

After he taped the IV in, he put the headphones on. I laughed and asked if those were to block out the noise…’cause I really didn’t need them! This got a laugh out of the doctor and he went on to explain something else which I didn’t catch. I got the impression the headphones were also there to keep my head immobile, because he tucked in some foam wedge things under the headphones on each side. After that…oh my gosh, what is this…a white metal CAGE was placed over my face. I think I must have looked really alarmed because he asked if I was okay. I blinked and said yes, I’m fine…but it really took me by surprise. The cage was locked down and now I’ve got metal bars surrounding me, with about an inch or so of space between my face and the bars.

They place a wedge under my knees, which elevates them and takes the pressure off my lower back. A rubber bulb is pressed into my hand and I’m told to use it if I need to communicate with them. Then the table starts moving and I go into the chamber.

All I can see is the white walls of the MRI curving overhead, with a blue line running down the center. There are no lights and nothing else to look at. All I hear is my tinnitus, my ears keening.

I lay there, wondering if it’s okay that my arm with the IV is bent. I’ve always thought you shouldn’t bend that arm, but I guess it’s okay because the doctor put my arm in this position – bent with my hand on my stomach, gently grasping the rubber bulb. I start to worry that I’ll have a muscle spasm and squeeze the bulb when I don’t mean to. Then I wonder what people do if they have to sneeze, or cough, or scratch their nose.

I lay there and try to think of ways to pass the time. My God, this is boring. Initially I have to fight some panic at being strapped into the cage…it really does feel like being in a coffin. I’m not a claustrophobic person but I could see how someone would freak out in this situation. The first 5 or 10 minutes I spend concentrating on my breathing and finding things to think about so that I don’t panic. I wonder: eyes open or closed? Does it matter if I’m opening and closing my eyes…does that count as “moving”? What about swallowing? I realize the saliva is kind of pooling in the back of my throat and I’m afraid to swallow…but now that I’m thinking about it I can’t help it. I swallow, and wait for them to pull me back out and admonish me. But it’s okay – nothing happens.

Oddly enough, the chorus of “I’ll Fly Away” is what I end up reciting in my head to calm myself down initially. I’ve only ever heard this song once, when Evan Rachel Wood sang it on Once and Again years ago.

After a while, I’m really getting bored. Then I start getting a series of heart palpitations, one right after the other, for 5 or 6 heartbeats….flutter BUMP, flutter BUMP. It really freaks me out and I feel lightheaded when they end. I spend the next few minutes doing deep breathing and trying to calm myself down. I think of songs to recite in my head. The palpitations go away and luckily they don’t return.

After a while, I’m pulled out of the machine and the doctor straightens my arm, pressing on the IV. I assume there’s a problem with the contrast dye and hope that he doesn’t need to pull the IV and start a new one. He asks if I’m doing okay and I tell him yes, then he tells me there’s only 20 minutes more. Back into the machine.

For the last 20 minutes, I really had trouble staying awake. I would find myself drifting off and then awaking with a jerk, or at least it felt like a jerk. In reality I wasn’t really moving, but it was so startling to snap back awake like that. I started keeping my eyes open more in an effort to stay awake, even though looking at the bars of the cage kind of freaked me out.

The procedure ended without fanfare…I was just brought back out, all the various trappings were removed, and I was asked if was okay. Like a fool, while he was removing the IV I asked the doctor if people tend to freak out a lot. I have a habit of doing this, making chitchat with people when they’re drawing blood or doing IV’s, because it keeps me from focusing on what they’re doing and keeps me from passing out. Well, I couldn’t understand a darn thing he said in response but I think he was saying it does happen pretty frequently, especially for people who’ve never had an MRI done.

He told me they were going to give me the pictures to take home, and I had to have him repeat it 3 times. Finally I said, “Pictures?” and he brightened up….Yes! I got it! It just threw me that they called them “pictures”…I think “copies of the scan” would’ve made more sense to me.

I was told to change back into my clothes and wait in the outside waiting room with Dave. We waited for about 10 minutes or so before they came out with a little CD that had a copy of my scan on it (or the “pictures”, as they said). And that was it. All done!

I was very happy with the place that did my MRI and I highly recommend them. Everyone that I dealt with was patient and efficient, and I was really impressed. They’re the only place around here that has a 3 Tesla scanner, which Dave was very excited about. If you live in Illinois and need to have an MRI done, I can highly recommend them: 3T Imaging

Second Doctor Visit - Medrol, Be Gone!

Well, I’ve finished the Medrol (11 days worth).  The potential side effects were really alarming:  Mood swings!  Sudden weight gain!  Acne!  Increased appetite!  Sleeplessness!  Ironically, I seem to be having more trouble readjusting to being off the medicine than I did while I was actually on it.  I noticed some periods where my heart was racing and most especially, sweating.  Oh God, the sweating.  It was disgusting.  I’d wake up in the middle of the night literally drenched – I’d have to change my nightgown because it felt like I’d gone swimming in it.  I actually ended up losing weight, though – I think I must have sweated it off!

So, no change from taking the Medrol.  I went back to the doctor yesterday for my check-up to see if the steroids helped and got another audiogram as well.  This was at the official office and the experience was pretty much the same, with the exception of actually dealing with receptionists instead of just the doctor.    The exam of my ears was uneventful, and my audiogram showed that both of my ears are the same now.  The marks on my audiogram (for both ears) are at the 110 db range with little arrows pointing down toward the 120 db line.

The doctor gave me a prescription for an MRI, just to rule out any deformities, blockages or other problems they aren’t aware of, and again mentioned the cochlear implant.  I told him I’d done some research and was definitely interested, so he went ahead and scheduled me for a Cochlear Implant Evaluation on May 7.  That’s a two hour appointment and that’s pretty much all I know about it.  I was given a form to fill out and bring with me, detailing my hearing loss history, hearing aid usage, etc.

The MRI was supposed to be today (April 29) but we found out this morning that the insurance company has to pre-approve it and they hadn’t done that yet.  This put me into a bit of a panic because I just changed insurance companies in January and now I’m worried that Aetna will find a reason to deny me.  (We just watched Sicko not long ago so I’m even more paranoid about insurance companies these days.)  The doctor’s office is supposed to call when they get the pre-approval and we haven’t heard from them yet so I’m hoping they call tomorrow.  We rescheduled the MRI for Thursday, May 1.

I’m actually really nervous about the MRI – not the actual test itself but the fact that Dave won’t be with me in the testing room and I’m worried I won’t understand what the technician is telling me.  I’ve been thinking about (and panicking over) how I would do something like an eye exam if I had to get one.  You know, you look into the big lens thingy at the chart, while the doctor sits next to you in the dark and says, “Better or worse?”  I guess I would have to look, then turn away and read the doctor’s lips … or something.  Gah.  I just won’t get my eyes examined again until I absolutely have to!

Today has been a weirdly emotional day for me – I burst out crying this afternoon, totally out of nowhere.  My heart has been pounding, racing and skipping beats, which leaves me breathless and coughing.  Dave thinks it’s from my body readjusting to being off the Medrol, since it affects the adrenal glands.  I’ve been panicking about random things, stressing out and just generally not reacting to things the way I usually do.

I’m settling down now and hopefully tomorrow will be blessedly uneventful.

Talking with my hands

It’s ironic, considering that I’ve been hard of hearing basically my whole life, but I’ve always wanted to know sign language. I think it’s amazing and expressive and just … wonderful. If there had been sign language classes in my high school, I would’ve taken them in a heartbeat!

But I’ve never learned. The opportunity just never presented itself to me and I never pursued it. When I had my first episode of hearing loss in 1993, I had to consider the possibility that I might become entirely deaf in the not-so-distant future. I assumed I had to learn sign language. At that time though, I didn’t learn because I would’ve had nobody to practice it with. What was the point of learning sign language if your family isn’t going to use it to communicate with you?

I really didn’t consider that there are a lot of deaf people who never learn it – it just seemed to me that anybody who couldn’t hear (i.e., hearing aids didn’t help) would know or learn sign language.

I realize this is a really, really common misconception. I’m coming across it more now because if I tell someone I’m deaf and need accommodations, they assume it means a sign language interpreter. I have to explain that I’m newly-deafened and don’t know sign language. I think the only thing that would benefit me at this point (besides good old pen and paper) would be CART (or real time captioning) where somebody listens and types what’s being said so that I can read it on a computer screen. At least I think that’s how it works – I’ve never seen it in action, just read about it and I know it’s available.

I did the same thing this time around, when I lost the rest of my hearing. My first instinct was to get information on sign language. I realized there’s no classes in my area – the local college has one class coming up this summer, it’s only got 2 openings left (we would need 4 openings for the whole family to go) and it’s prohibitively expensive. It would cost nearly $600 for all of us to attend, and we just can’t afford that. If there are classes available in the community, I can’t find them.

However, Dave used to teach a casual sign language class many years ago (before he and I met and, ironically, before he lost his hearing) and he has a lot of materials. He remembers some of the signs and taught my daughter and I how to fingerspell. We’ve been talking about it and decided that learning ASL is probably unrealistic for the whole family, so we’d be better off learning our own form of PSE or contact sign, a combination of ASL and signed English. I don’t think I’ll ever know sign language well enough to use an interpreter, but I’d like to know it well enough that I can use it with my family to get past those stumbling blocks where I can’t lip read.

Raven, my daughter (and no, that’s not her real name…LOL…she asked me to use it as her pseudonym here) really loves the idea of learning sign language. She’s already adept at fingerspelling and does that when I can’t catch certain words she’s saying. I can remember being her age and thinking how cool it would be to know sign language, so I could talk to my friends without other people knowing what we were saying.

So we’ve got some books, we got some DVDs from the library and we’re trying to use signs when we can. In the past when I considered learning sign language, I quickly abandoned the idea because it really doesn’t work if you don’t have somebody to sign with and practice. I would eventually forget about it because I didn’t need to sign to communicate. Now, though, I find myself asking Dave what the sign is for a certain word, or practicing phrases with him. It’s really fun!

Now that the pressure is off, I can take my time and learn sign language at my own pace and in the manner that will work best with my family. Before there was this sense of urgency: Oh my gosh, if I don’t learn sign language immediately, how will I communicate?! I realize now that it’s ridiculous to think that way – just like if I moved to a foreign country, I would need time to learn the language. Even though I don’t expect to rely completely on sign language, I still think it’s a good thing to know. It’s something I’ve always wanted to learn and now I’m really motivated!