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You’re Deaf – Now What?

Each time I lost my hearing (1993 for my right ear, 2008 for my left), I was surprised and disappointed by one thing: I was not offered any type of support for dealing with such a monumental loss. And this is not to say anything bad about my audiologists and doctors, because I really like them. But other people have mentioned it too, the lack of resources, information and support for late-deafened adults, or anyone suffering from sudden loss of hearing.

In 1993, the only thing offered to me was a different type of hearing aid, a bi-CROS that brought in the sounds from my newly-deaf side. I was thrilled with my new hearing aids, so no complaints there. But I had lost so much hearing that I could no longer hear my alarm clock for work each morning. I had NO idea that there were ALDS (assistive listening devices) for hearing loss, beyond an amplifier for the phone. The audiologist didn’t tell me about them. My husband at the time was the one who talked to the audiologist and found out about an alarm clock that would shake the bed to wake me up. I mean, they sold them right in the office – why wouldn’t she offer that information, knowing I had just lost all the hearing in my right ear and had a profound loss in the left?!

The internet was in its infancy in 1993, so the alarm clock and new hearing aids were the full extent of support I received. In 2008, my loss was much greater because I was now completely and totally deaf. They couldn’t offer me hearing aids. I didn’t know sign language, and neither did any of my family or friends. Yet again, once I got the hearing test that confirmed I was hearing absolutely nothing, I didn’t receive any information on how to deal with being completely deaf. That just blows my mind.

They put me on steroids to see if my hearing would come back; just like in 1993, they didn’t help. When I went back in for the follow-up visit, I was prepared. Thanks to the internet, I had done my own research. I knew I could receive a free TTY if the doctor signed off on it, and I knew about cochlear implants. I was the one who asked if I could get CIs (although hopefully if I hadn’t immediately asked, they would have offered it as an option). I was the one who asked if they could help me get the TTY. I found the state lending program that also gave me a flashing light for the phone (not that I was using the phone at that time).

Can you imagine losing all your vision, going to the doctor and having them say, “Well, yep, you’re blind,” and then sending you on your way? You have to hope they’d give you a list of resources for cane training, a service dog, learning Braille, programs to voice text for you, etc.

I didn’t find online sources of support until 1997, when I suffered from a horrific ear infection in my good ear. I spent almost two weeks without my hearing aids, using just the very limited hearing in that ear – it was already profoundly deaf, and I spent much of that time with my ear filled with medicine and covered with a cotton ball. I was a single mom at that time, and I was scared at how close to ‘deaf’ I really was. I had been able to fool myself into complacency with my hearing aids, and not having them to rely on really scared me. So I started searching for hearing loss support groups, hoping to meet other people like me. I have never interacted on a regular basis with someone that had hearing loss, so I didn’t have any real-life support of that type.

I found the Say What Club, and they are still active today. Back then, it was just one or two mailing lists; you signed up and they assigned you to a list, and then you would receive everybody’s emails. That was where I first learned of CIs and many of the ALDs I’m familiar with today.

I also joined SHHH, which later became HLAA (Hearing Loss Association of America), and ALDA, the Association of Late Deafened Adults. These are large organizations that have websites with lots of information, newsletters/magazines, and yearly conventions. Nowadays I am also a member of Illinois Cochlear Implant Chapter, which has local meetings every other month.

A view of my left CI (purple metallic color)

A view of my left CI (purple metallic color)

If you’re dealing with hearing loss, whether it’s recent or not, it can really help to be part of an online support group. I love email because it eliminates communication barriers; real life meetings are also nice because all the ones I’ve been to are captioned with CART. Now that I have my CIs, I usually don’t need CART to understand at a meeting, but it is still hit or miss whether I’ll understand a question from someone in the audience. CART captions everything being said, and it’s nice to utilize it for those soft-voiced questions or for a speaker with a heavy accent.

Losing your hearing can really isolate you. It’s tempting to want to stay home and avoid social interaction because it’s so exhausting, trying to read lips and follow conversations. It can be disheartening to be part of a large group and have no idea why everyone is laughing. Being part of a support group means that these people know what it’s like to have a hearing loss, and they don’t mind doing whatever needs to be done to be understood. At conventions, you’ll see people facing each other and reading lips, signing, writing notes. I still remember our first ALDA convention in 1999, when we joined others for dinner and dancing. We didn’t know how those who were deaf could follow the beat, until some friends showed me and Dave that if you hold onto a balloon, you can feel the vibrations of the music. How cool is that?!

Hopefully audiologists will catch on and realize that more needs to be done to support a newly-deafened adult. I would be curious, if anyone out there is a parent of a child who was diagnosed with hearing loss, if they were offered sources of support and help by their audiologist. Is it just adults who are sent off to deal with this on their own?

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Finding Love Online

I know what I was doing 16 years ago on this day. I was originally planning to go out with a friend of mine. I can’t remember if we were going to see a band or just go to a club, but she ended up canceling on me at the last minute. So I was sitting around with nothing to do when Dave called me in the early evening.

We’d been online friends for a while at that point. We were both on a hearing loss support group mailing list called the Say What Club. I joined in Sept. 1997 and Dave was already a member, so he welcomed me to the list. We were good friends, and then in early 1998 we started to kinda like each other. 😉 We chatted via IRC and talked on the phone (not our favorite thing to do, obviously, but it wasn’t bad because we both understood what it was like to use the phone when you have a hearing loss). But we hadn’t met in person yet.

My kids were young, and they spent every other weekend at their dad’s. This was their ‘Dad Weekend’ so I was alone with no plans. When Dave asked what I was up to, I told him about my canceled plans. “How about if I come over?” he asked, sort of jokingly. I laughed and then he said, more seriously, “It’s only about a two hour drive. I really could come over if you want.”

So we made plans, and then I waited to hear my doorbell ring. Neither of us had cell phones or GPS, of course, so Dave wrote out his directions from MapQuest. Then he proceeded to get very lost. He couldn’t call me, so he just kept driving around, hoping he’d find my street. (There are two streets with this name in my town; he was on the wrong one because he didn’t realize he had to specify ‘west’ in the directions.)

About one and a half hours past when I was expecting him, when I was starting to think he’d blown me off, the doorbell rang. And there he was on my front porch, wearing a black leather jacket and looking just like his pictures.

Once he came in and we hugged hello, he told me the saga of his drive from Michigan to my house in Illinois. He brought in his WebTV, which was his way of connecting to the internet in 1998, and we plugged it in so he could show me how it worked. I showed him my computer; he scoffed and said he couldn’t see why he’d ever need a computer – he could do everything he wanted with his WebTV. (I do still like to tease him about that every now and then.)

We just hit it off immediately, and all the worries I had (maybe there would be no chemistry in person, maybe he’d take one look at me and want to leave, maybe he’d have weird habits that I wouldn’t realize until he was in my house, maybe he’d be an axe murderer) flew out the window. We went to see the movie Titanic (and the ALDs in the theater didn’t work, grrrr) and went out for an 11:30 pm pizza at Giordano’s (Dave’s first taste of Chicago-style deep dish pizza).

And here we are now, 16 years later, with this date inked on our calendar every year. We always celebrate with a deep dish pizza (now it’s from Lou Malnati’s) and I’m always thankful that Dave took that chance and made that two hour drive to meet someone he previously only knew online.

Thanks, Say What Club, for introducing us!

Me and Dave, in the early days of our relationship

Me and Dave, in the early days of our relationship

Happily Ever After

Earlier today on Facebook, my sister-in-law posted a picture of her husband.  He was taking clothes off the clothesline, and she captioned the photo thusly:  “To all you young gals out there……this is what a sexy man looks like after 37 years of marriage.  To all you gals my age…..you know what I’m talking about!”

Can we get an AMEN?!

I always tried to tell my kids to focus on more than just looks when it comes to a significant other.  I know they come into play a little bit as far as initial attraction goes, and that’s inevitable.  I suppose if Dave and I were really turned off by each other’s looks, we might not have become a couple.  I don’t know – I can’t test that theory because it isn’t the case (wink wink).

What I do know is that we originally had no idea what the other person looked like; this was in the earlier days of the internet when it was a little tougher to get a photo posted online.  We had been corresponding for a few months before I ever saw his picture; he snail-mailed me an envelope of photos to scan for him so I could post them on the Say What Club (SWC) photo page, which I maintained at the time.

Because we initially just corresponded via email (privately and through the SWC) we really got to know each other well.  We wrote long emails and eventually moved on to IRC chats, which were more real-time than email and better than a phone call since we both had hearing loss.

Although we originally met online 16 years ago this month, September 1997, we didn’t meet in person until the very end of March 1998.  We had a lot of time to talk and not be swayed by appearances.  I had seen his packet of photos when I scanned them, and I think he probably saw one or two photos of me that were on the SWC site.

When we met in person and he started coming to visit on a regular basis, one of the first things I noticed was how helpful he was around the house.  I’d come out of the shower and find him washing the kitchen floor; he did dishes and laundry, cooked and cleaned even in the early days of our relationship.  I actually figured it would wear off, that he was just trying to make a good impression on me.  As the years went on, I realized it was just the kind of person he was – and ever since, we’ve had this kind of unspoken partnership as far as housework was concerned.  If it needed to be done, one of us would do it – we didn’t divvy up chores or make a big deal out of it.  There was no resentment, no keeping track of how many times he emptied the dishwasher or that kind of thing.

We do have a couple things that are our exclusive domains – yard work and the garden for Dave, anything to do with money, bills and the checkbook for me.

Back to my first paragraph – seriously, nothing was sexier to me than seeing him pitch in like that from day one.  At the end of the day, I’m not falling into bed exhausted, angry and resentful because I did all the work while he sat around or whatever.  There was a mutual respect going on (still is) and that does wonders for your love life!  I imagine it goes both ways – if I was just lying around while he did all the work, I’m sure he’d be pretty irritated with me at the end of the day.

In the early days, I worked outside the home and Dave was here with the kids, but we’ve been working together from home since 2001.  We spend all day, every day together.  Even after being together for over 15 years, I still sometimes just stop and marvel at how much I enjoy being with Dave.  I love talking to him and just hanging out with him.  We talk and joke around all the time; I never run out of things to say to him.  It amazes me that we found each other the way we did, especially considering we lived in different states and have a nine year age difference.  Originally our hearing loss was the main thing that brought us together.  Who knew that we would just completely enjoy each other so much, so consistently, for all these years?!

Me and Dave in our younger days, probably the first year or two after we met

Me and Dave in our younger days, probably the first year or two after we met

I know I don’t look much like I did 15 years ago when we first met; we’ve both gotten older, put on some weight…time has begun taking its toll.  But when you have a strong friendship and respect for each other, all that physical stuff just falls away.  That’s what I kept trying to impress on the kids:  Looks don’t stick around.  Make sure this person is someone you totally love spending time with, talking to; make sure you respect them and they respect you.  That supersedes all the superficial looks stuff.  What’s sexy is not when your husband grabs your butt as you bend over to empty the dishwasher … it’s when they reach around you to help you empty the dishwasher.

It doesn’t hurt if the guy does laundry, too.  Hubba hubba!

And the (Medical) Hits Just Keep on Coming!

Remember how I said Dave had the same abdominal pain that I did earlier this week?  And I thought maybe we had something viral?  Well, it turns out Dave’s pain was an entirely different animal!

He woke up feeling fine on Saturday morning and went over to my mom’s to continue painting – when I woke up, I just found a happy note from him (“Good morning, sunshine!”) letting me know where he was and that he’d be back by 10 am.

He came back and I could tell something was wrong, but I couldn’t tell if it was maybe some catastrophe that happened at my mom’s, or if he was having some side effects from the Hep C treatment or what.  He told me that the pain had come back, and he thought it was some terrible gas attack.  He stretched out on the floor and said that lying flat made it feel a lot better, so we assumed he was dealing with my Weird Stomach Troubles.

As the afternoon progressed, he said he was pretty sure it was something else – he could feel really bad pain when he urinated, and it was more in the back on his left side (my pain was more in front, like the pelvic area, and not the back).  We checked the possible side effects from his Hep C treatment, but nothing was mentioned about pain like this…nausea and loss of appetite, yes, but not severe pain.

Of course we got online and started researching, and then kidney stones seemed like a real possibility.  After he read some horror stories about guys having instruments inserted into their ‘delicate personal area’ to extract the stone, he decided he would ride it out at home until he passed it on his own.  So he started guzzling water and riding out the pain, assuring me that he could handle it and there was no way that he needed to go to the ER.  Since he’s as stubborn as me, I didn’t push him on it…I just told him to let me know if he changed his mind.

Around 7:30, we were watching TV and I could tell he wasn’t even paying attention to the show; he was closing his eyes and grimacing in pain.  I asked again if he wanted to go to the ER; first he said that maybe he’d go in the morning, if it wasn’t better.  About 10 minutes later, he finally decided he’d rather go NOW, thank you very much.  So we headed out around 7:45, after making sure we had his Hep C information.  I briefly thought about bringing his morning meds in case he was admitted, but I decided against it.  I also confirmed I had backup CI batteries in my purse, since they usually run down in the late evening.

We got to the VA hospital (about a 30 minute drive since there wasn’t much traffic) and the waiting room was empty.  Dave walked up to check in and the lady at the desk said, “Oh my, you look like you’re in a LOT of pain.”  That was putting it mildly!  By this time he was walking like an old man, hunched over and shuffling.  The intake nurse called him back pretty quickly; I made sure to go with since he was having trouble hearing and really kind of out of it from the pain.  His blood pressure was 150/90, which is by far the highest I’ve ever seen it – Dave always has perfect (enviable) blood pressure.   I noticed that the nurse repeated everything back to him when he was finished, to confirm his symptoms, and I was impressed – I had never seen them do that before.  I assumed it was because he was hard of hearing.  I did notice that the VA seems to deal with hearing impairment better than other hospitals I’ve been in, possibly because they see it more with veterans than with the general population.

We went back out to wait for about five minutes before being called back to a room.  Then we sat, and sat, and sat some more.  A nurse came in and collected Dave’s urine sample and said the doctor would be in soon.  I would say it was close to 9:30 or 9:45 before he came in.  I was starting to get a little pissed; I mean, Dave was in so much pain and it felt like we were being ignored even though the ER seemed to be pretty empty.

Finally though, things started moving along and we ended up being really pleased with how the whole visit was handled.  He was seen by the doctor, then the nurse came back to draw blood and right after that they took him for a CT scan.  I expected that to take forever; I remember checking my watch and it was 10:08, so I figured he might be back around 11:30.  He came wheeling back in at 10:22!  Then we waited again, for a long time.  After about 30 or 45 minutes, the nurse came back and gave Dave some morphine.  FINALLY.  At that point, he was so much better – it really took away his pain and made him more lucid.

We were chatting away and boom, my right CI battery died.  I grabbed my purse, slipped on a replacement battery and…nothing.  The battery was dead.  So I put the other replacement battery on, and same thing – dead.  I couldn’t believe it!  It’s been a long time since I used the batteries in my purse and I never dreamed they would just go dead without using them, but I guess that’s what happened.  So there I was with only one functional ‘ear’ at about 11:15.  I checked my left CI and I saw two flashes when I slipped the battery on and off.  Four flashes means the battery is fully charged, so this one was at least halfway gone, possibly more.  I decided to just take it off and go au naturel, since I can understand Dave fine when I can’t hear.  I wanted to save my hearing for when the doctor came to talk to us, and also in case I had to drive home alone (if Dave was admitted) so that I could hear the GPS.

This was another loooong period of waiting, while they waited for someone to read the CT scan.  Since Dave was able to talk and no longer in horrible pain, we spent a lot of time chatting and practicing sign language.  He was teaching me – I still need lots of practice!  At one point they came in and took him for an X-ray; that went just as quickly as the CT scan.  Finally, the doctor came back and confirmed that Dave had a 2mm kidney stone.  They were giving him three medications (pain meds, antibiotic and Flomax to help his muscles relax) as well as a strainer so he can (hopefully) catch the stone.  They told him to call Urology on Monday and tell them he needs an appointment.  He is really, really hoping he will pass the stone on his own before the appointment!!

It was pretty funny – the doctor was talking to him about using the strainer when he urinated and Dave said, “Oh no, I don’t strain when I pee.”  And I could see this look of amusement pass over the doctor’s face – he was standing on Dave’s deaf side (as was everyone that walked into the room, since they entered on his left, which is deaf) and he finally realized Dave was misunderstanding him.  But I thought it was a pretty easy thing to misunderstand – we cracked up over that later on!

The doctor left and Dave went off to go the bathroom (his seventh time since we entered the ER).  The original nurse had left for the evening, and the intake nurse had taken over for her.  While Dave was gone, she came in the room, kind of excited, and asked if we knew sign language.  I showed her the CI I was holding, told her I was deaf and my batteries were dying so I was preserving them, and put the CI on to talk to her.  She pulled her hair back and said, “I have CIs too!  Two of them!”  It was so awesome!  I realized that was probably the reason she repeated everything back to us during intake – to make sure she heard it correctly.  She knew sign language well, and explained that she had seen us signing earlier.  I told her that Dave was teaching me, since I just lost all of my hearing five years ago and didn’t know many signs.  Then I told her that we actually met online through a hearing loss support group, the SayWhat Club.  Her eyes lit up and she said she’d been looking for something like that; she had been a member of ALDA many years back.  We were having a great time, talking about SHHH and ALDA, and I recommended SWC, HLAA and the Illinois Cochlear Implant Chapter to her.  Dave came back and joined in the conversation; it was just a really nice surprise and an upbeat way to end the evening.

We went off to wait at the pharmacy for his medications, and finally headed back home a little after 1 am.  We got home between 1 and 1:45, fed our outdoor kitty (Goldie) who was waiting impatiently on the deck for her midnight snack, and collapsed into bed a little after 2 am.  We’re usually in bed by 11 pm so it was weird to be up that late and not even tired!

Dave is making pie crust while I type, and his pain meds are doing the job.  Hopefully this medical crisis will resolve itself quickly for him and we can get back to focusing on one medical treatment at a time!

The Butterfly Effect

Every so often, I get a request from Advanced Bionics to mentor a person who qualifies for a cochlear implant and has questions, or would just like to talk to someone who already has one.  It’s strictly volunteer; I don’t get paid for doing it and I can choose whether or not to accept the mentoring opportunity.  The majority of my mentoring has been done online, via email.  This past weekend, though, I got the chance to talk with a fellow who lives in the area and was hoping to talk to a CI recipient face-to-face.

He and his wife came by and spent a few hours talking to me and Dave.  We really enjoyed talking to them, and we found that we had a lot in common regarding this invisible ‘disability’ of ours.  We were the first hard of hearing/deaf people he had ever met in person.  I can remember what that was like, meeting my first hard of hearing (HOH) friends.  Growing up, and into my early 30s, I had no friends or even acquaintances with hearing loss.  I was the only person in school with a hearing loss (that I knew of, anyway).  All of my family members, friends, boyfriends and my first husband were all ‘hearing people.’  It is such a relief to finally talk to someone who gets what it’s like to have people assume you’re stuck up or rude because you don’t respond to them, someone that knows what it feels like to have people assume you’re doing fine because you can hear a certain sound…but they don’t get that just because you hear it doesn’t mean you understand what you’re hearing.

In late 1996 through 1997, I was a single mom with two young children, working full time and getting used to doing things on my own.  I was going along okay, feeling pretty proud of myself for my coping skills, when I got a raging, horrible ear infection in my good ear.  (At this time, I had a severe loss in my left ear and was profoundly deaf in my right ear; I wore a hearing aid in my left ear, which was my ‘good’ ear.)  I used to get periodic middle ear infections from having an ear mold in my ear all day long; they were painful but I could deal with them.  This one, however, was beyond anything I’d ever experienced.  I was running a high fever and in so much pain that all I could do was cry.  I saw my ENT, and he actually had to place antibiotic-soaked cotton down inside my ear with some kind of instrument (I cringe just remembering this!) because my ear canal was so swollen that drops would not go down inside to where they needed to be.  He also prescribed antibiotics, as well as Vicodin for the pain.  Usually I can’t take Vicodin; it makes me sick to my stomach.  I broke the pills in half and, let me tell you, it was the only thing that would even bring me a touch of relief.

I was off work for a week as I dealt with this, and my parents took the kids for me.  The cotton deep inside my ear, combined with the fact that I couldn’t wear my hearing aid, rendered me completely deaf during that time.  It was my first experience with total deafness, and it scared the crap out of me.  I realized I was not really that far away from being deaf, and that I had no coping mechanisms in place for it.  That’s when I got my bed shaker alarm clock, and started looking into online support groups for people with all forms of hearing loss.  That’s when I got my first deaf and HOH friends.

I joined a mailing list, which still exists today, called the Say What Club (SWC).  When I introduced myself, I explained my hearing history and what I was currently dealing with, and expressed an interest in learning sign language.  Everyone was so welcoming and friendly, and I was amazed at how good it felt to talk to other people who knew what it was like to deal with hearing loss.  One of the people who welcomed me was Dave, and that is how we met.  He sent me a huge box filled with books and videotapes on sign language, since he used to teach it.  I was blown away by his thoughtful gesture, and I really liked the way he expressed himself in writing, so we became fast friends.

At the time, I was casually dating (a couple guys from work, a couple people I’d met online) and really having no luck with it.  I was getting fed up with dating in general and was about to swear off any kind of love life for a few years, until the kids got older.  It wasn’t worth the hassle.  Dave was just a few years out from his bone marrow transplant, and he felt it wasn’t fair to get into a relationship with someone because who knew if his leukemia would come back or if he might have some other complication.  So we were just friends, writing emails and meeting up with other SWC friends in chat rooms.  I can remember kind of yelling at him about his reason for not dating somebody – I mean, we could all die tomorrow…is that a reason to pass up an opportunity for love if you find it?

As 1998 came along, I could tell he was starting to like me as more than a friend.  We hadn’t met in person, and I tried to discourage him because I knew what it was like to meet someone in person after knowing them online.  You kind of fill in what you don’t know with your ideal image of what you want in a person; once you meet them for real, it’s kind of hard for them to live up to that imagined ideal.  He basically blew off my warnings, sure that everything would be just fine.  I was nervous, worried that he’d meet me in person and be truly disappointed, and then our friendship would be awkward and weird.  I didn’t really tell anyone about our burgeoning relationship; this was back when meeting someone online was fairly rare and everyone was convinced that the only people who would do that were serial killers and psychos.

We made some tentative plans, and then our actual meeting ended up being really spontaneous.  It was the end of March, and my plans with a friend from work had fallen through.  It was early Friday night, the kids were at their dad’s for the weekend, and Dave called.  As we talked, I mentioned my now-free evening and he said, “How about if I come over?”  I thought he was joking, but that’s exactly what he did!  He drove from his apartment in Michigan which, at the time, was over four hours away.  He got a little lost so he didn’t arrive on my doorstep til nearly 11:00.  This was before the days of cell phones (especially for hearing impaired people) so I just had to wait and wonder if he would ever show up.

When I opened the door, I was so scared.  I mean, what if I hated this guy in person?  And he was there, in my house…how would I get rid of him?  It wasn’t like a date in a restaurant, where I could make an excuse and leave.  My first thought was that he was shorter than I pictured; I was standing a little above him in the doorway, while he stood further down on the porch.  When he stepped in, smiling broadly, I realized he was actually the perfect height for me (I’m barely 5’1” and he’s 5’8”).  We hugged, he proudly showed me the WebTV device he’d brought along (this was how he accessed the internet — no computer for Dave) and we started talking.  It took me about five minutes to realize everything was going to be just fine; he was basically the same in person as he was in email –  funny, articulate, interesting and kind.

That was nearly fifteen years ago and the rest, as they say, is history.  We dated long-distance for a couple of years, and then Dave moved here from Michigan.  We got married Feb. 2, 2002 – we’ll be celebrating our eleven year wedding anniversary in just two weeks.  All of that from one chance gesture, reaching out to connect with people in the same boat as me.  Ain’t life grand?!

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