Summer of Ennui

I’m always writing blog entries in my head.  If I could just publish right from my thoughts, this blog would be updated every day.  🙂  So let’s see…summer has been pretty laid back. Laid back, but yet weird. It’s been, like, the Summer of Ennui.  So many things have been contributing to this general feeling of distraction and dissatisfaction, like we can’t seem to get anything done.

The candle business has been unusually, deathly slow.  Summer is always a slower period for us but this summer has been like no other.  Normally we would take the extra free time to finish projects around the house or just go out and do things…maybe visit some museums in Chicago, for instance.  (Chicago is about 45 minutes away by car, but we rarely go there so it’s like a little vacation when we do.)  But the downside is, we have no money to do household projects or even a museum trip, because business has been so slow.  A vicious circle!

In addition, Dave’s health has been up and down (mostly down) this summer and many days he just doesn’t feel like himself, strong enough or good enough to work around the house or trek through a museum. He’s been coughing frequently since October or so, and they can’t figure out why. He’s seen an ENT doctor and a pulmonologist this summer, had a CAT scan of his lungs and a pulmonary function test, plus a couple of scopes sent down his nose into his throat (which he really, really hated). So far the verdict is acid reflux causing the cough. However, he never has acid indigestion or pain after eating, so this diagnosis makes no sense to me. Regardless, he’s taking Prilosec twice a day now and giving it a month or two to see if his cough eases up. In the meantime, he’s worn out and exhausted, and the energy he’s used to having is just gone.

We’ve managed to do some very low-cost projects around the house, mainly painting, which actually has made a huge difference. All of the paint is paint we already had (some we bought last fall, some was from a huge batch of paint we bought at a thrift store and just stored in the garage in case we ever needed it). So we paint, take frequent breaks, and admire the work we do manage to get done. It can take us a month to get a room painted but eventually it gets done!

I also made notes of all the free entry days for the Chicago museums – most of them don’t do this over summer, but summer is nearly over and it might be nice to take advantage of free admission this fall if Dave happens to be feeling well enough that day. So we can still have fun on a bare bones budget…it just takes some planning.

For me, part of what threw my whole summer off was my daughter deciding she wanted to move to her dad’s. It’s been a rough adjustment for me, and just one of those things at the back of my mind that was bothering me. It left me feeling unsettled and just generally unhappy for a long, long time. I’m only now getting used to the thought of having an empty nest. But she wanted to go to school out there and was really miserable at her school here, so I finally gave her my blessing. I think I’ll feel more settled about it once she actually starts school out there and actually likes it.  (She’s in her sophomore year now and starts at her new school at the end of August.)  I’m hoping she doesn’t start at her new school and decide she hates that one as well!

My one year CI surgery anniversary came and went on July 22. My one year activation anniversary is just a week away, on August 20. I have my one year mapping (one year!) on August 21. I’m really curious to see what happens and how my tests come out.

Lately I don’t even put the volume anywhere near the 12 o’clock mark (which is 0, I guess, on the volume control). I keep it down between 9 and 10 o’clock usually. This has been bothering me a little, like I’m regressing or something. I feel like I should be needing MORE sound, not wanting less volume. But putting it up to 12 o’clock is just uncomfortable for me most days. I mentioned it to Dave and he thinks it’s a good sign, like my brain doesn’t need as much volume to hear now. I don’t know what to think, but I’m definitely going to mention it during my mapping.

I also have spent most of the summer with my CIs on the background noise reduction program, because we’ve been keeping fans going most days. The background program (as I call it) is awesome for killing the sound from the fans but letting me hear voices, TV, etc. just fine. It does change the quality of the sound a bit, and sound is softer on the background program, so if I switch up to my regular program then everything sounds super loud again. It’s weird, how I’m just not tolerating volume very well these days. Maybe I need to have them lessen the volume when I go for the next mapping.

A couple weeks ago I had another weird hearing event, same as the kind I mentioned in my “Sick Hearing” post. Everything got really echoey and sounded strange. I noticed it when we came back from grocery shopping one day. It lasted for about 2 days, gradually getting better each day, until things sounded normal again.  All I can guess is that something changes my hearing – maybe some swelling, for whatever reason. Maybe barometric pressure…who knows?!  If I had gotten sick (with a cold, for instance) it would have made perfect sense to notice changes in my hearing but the hearing change was the only physical symptom I had.

Sometimes I feel like the Queen of the Worst Case Scenario.  Maybe it’s because I’ve had too much free time this summer, but I seem to be imagining all kinds of crazy scenarios and how I would deal with them. For instance, if we had some kind of catastrophic disaster, something that left us without electricity…eventually I wouldn’t be able to use my CIs.  I’d be back to lip reading and total deafness, all the time. Of course, the chances of this happening are rather slim but it doesn’t stop me from periodically dwelling on how dependent I am on electricity to keep me hearing. It also just highlights the fact that a CI is not a cure for deafness…there IS no cure for deafness.  I am still deaf, and I still tell people I’m deaf. I am really content with where I am at this stage of acceptance, though. If something happened and I couldn’t benefit from my CIs anymore, I could accept that. I kind of like being able to move from total silence to hearing with my CIs; sometimes it’s nice just to hear nothing, and then when I put my CIs on, the sound I hear is amazing and wonderful. It’s a little like the best of both worlds!  I’ve noticed sometimes Dave will tell me he’ll wait til I put my CIs on to tell me something, but I always encourage him to just tell me. I can still lipread and communicate without my CIs on, and I like to keep those skills honed.

Another scenario I occasionally torture myself with is the one where something happens to Dave – this is probably because he’s been sick, and he’s a leukemia survivor, so I’m always aware that every day I get with him is a gift. So I freak myself out by imagining what would happen if he wasn’t here, and I was alone. Totally alone.  I’ve actually never been totally alone before, because I was either married or had the kids here with me. Now the kids aren’t here and the thought of Dave not being here just freaks me right out. In this scenario, being deaf makes me feel really vulnerable and it’s not a feeling I like. It would probably be a little scary to go to sleep at night knowing I can’t hear if something happens, and there’s nobody there with me to alert me.

Moving on from the worst case scenarios that I really should not dwell on…another thing I meant to write about here is babies and toddlers that get CIs.  This thought just came to me one day: I often fiddle with my volume and programs, based on how things sound to me. If I’m having a day where volume is overwhelming, it’s easy to turn down the sound. I can switch to the background noise program if the sound from the fans is overwhelming, or if I’m at the mall.  I know that when I first wake up, sound is especially overwhelming after a night of silence…so I put my volume way down to begin with, and ease it up as the morning goes on and I get used to hearing again. But how do babies and really little kids deal with this, and how do their parents know? If anyone with a child with a CI is reading, I’d love to hear how it’s handled.  Does the audiologist train the parents about that sort of thing? I mean, do they realize how overwhelming it is when you put the CI on for the first time each morning?  I’m thinking mostly of pre-verbal kids and babies, who can’t communicate how things sound.  I just find it really interesting!  I can’t remember how I handled wearing a hearing aid as a kid, but I was 4 years old when I got it so I was able to tell my parents how things sounded.

Well, I’ve been writing while Dave was at the VA hospital for a checkup with his hematologist. He’s home now with the results of his latest tests. His pulmonary function test was fine; the CAT scan showed something and he can’t remember what it was called.  All he remembers is “central” and “nodularity” and that the doctor stressed that it was mild. Since this doctor is the one who mostly deals with his blood work (which he gets frequently, because of the leukemia and bone marrow transplant he had in 1993) he didn’t know much about the pulmonary stuff.  He sees the pulmonologist again on Sept. 11 and will find out more then, I imagine.  I think he may have to get a bronchoscopy at that time too.  Here’s hoping it’s something they can fix for him.

About wendiwendy

I'm a real-life bionic woman.

Posted on August 12, 2009, in Cochlear Implants & Hearing Loss, Emotions & Attitude, Family and tagged , , . Bookmark the permalink. 3 Comments.

  1. Hi,

    It’s true that acid-reflux can cause asthma. Raising the head of the bed slightly may help reduce the acid-reflux, in addition to the medications that have been prescribed. Is it possible for Dave to take some asthma medication to help control the coughing? I’m no doctor, but my MIL has had same probs. Her acid reflux is better and the coughing is not as bad as it once was after she did the above and also took asthma medication. Hope the bronchoscopy will illuminate what is going on with that cough. Hope he gets better!


  2. Hey Wendi, for worst case scenario number one keep plenty of gas in the car to run the engine while your power cells get charged using the cigarette lighter socket adapter! If not and you’ve got two processors with four batteries each, go to one processor for about eight days, maybe! That is if my math is right! I’m not certain that it’ll work with the Harmony, but AB sells an Auria PowerPack that uses one AA battery, it’s expensive through! Out here in earthquake country I fear having no power for days or weeks more than getting crushed, put I also have a PSP that has an AA battery power pack. So when it hits us all I’ll need to do is find my stuff in the rubble! Just a thought or two from a rust bucket of an ol’ mongrel Irish dawg with a CI who also fears being home alone!


  3. I’m not the parent of a young child with a CI, but I am the grandparent of one. Born with normal hearing, our grandchild was profoundly deaf–probably as a result of her underlying metabolic disorder–by a year. She had her first CI at 18 months and now has two CI’s. Her mother, our daughter, learned to watch for behavior changes that might indicate that volume was too loud or that our grandchild might be having difficulties in some other manner. At five now, she’s able to tell us all when something is wrong, but previously she would become agitated or maybe even touch her head. She would flinch if sound was too loud and as soon as she gained enough coordination, would whip off the processor if some sound bothered her. It’s rather like watching for signs of a building ear infection in a child who has frequent ear infections. However, now that her verbal skills are catching up to that of her peers, it’s much better to have her tell us specifically what’s wrong. She just handed me one of her processors and told me the battery needed to be changed, for example.


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