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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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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!

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