Hard Work

When I decided to revive my blog and write about grief, I resolved to put no pressure on myself to make big changes, accomplish anything major, or be exceptionally productive for at least the first year after Dave’s death. I wanted to just process, grieve, feel like I could stay in bed all day if I wanted.

I’d read somewhere that most people expect the grieving process to be over after 2-4 months. That blew my mind – two months in, I was just starting to come out of the state of shock I’d been in. One of the really good books on grieving that I read (which is probably where I saw that statistic, although I’ve seen it in more than one place) said in reality it’s more like three years to really feel like you are back on your feet. And even that isn’t always the case – there is no timeline, of course. This was more of an examination of society’s expectations on a grieving person.

So here I am, almost 10 months later. I feel like I’ve been able to really absorb and reflect on Dave’s death, how his life and death have affected my own life. For a long time I thought I was making no progress; just when I felt like I was getting steadier, I’d have a week where every night (it usually happened as I was getting ready to head up for bed) I would cry and tell him I can’t do this, and he should be here for all these things he was missing. I felt just as shattered as I did in the very early weeks.

So I cried. I talked to him. I wrote in my private journal (to him and to myself), on Facebook, here on my blog. It sucked and I thought my life was always going to feel that way. The loneliness was devastating. Dave and I had spent every minute of 23 years together; we ran a business together, we retired together, we were ALWAYS together. I went from constant 24/7 companionship with someone whose company I never got tired of, to being completely alone all day long. I was in a town far from my family, I really didn’t know anybody local. The two cats were my only social interaction.

It was HARD, harder than I ever admitted to anyone because honestly, there was nothing anybody could do or say to make it better. Yes, I had wonderful memories of our life together. But I didn’t want memories – I wanted my husband and best friend back.

I just got up every day, told him, “Okay hon, here we go, another day to get through.” Fed the cats, found ways to occupy my time, tried to meet people. I used social media a lot to keep from losing my mind with loneliness and it worked – especially Facebook, where my family and friends were so responsive and kind to me. For a long, long time, I didn’t have the mental energy to do much more than post and then like/love the responses to my post. I didn’t interact as much in the comments as I normally would. But if I was feeling like I could, I tried to because I knew I needed to come back to myself and that was a small start.

(As a side note, I’m probably going to start posting some of the FB posts here, with a “From Facebook” note in the beginning. I feel like I want them here as well, as part of the grieving process I’m documenting, but I don’t want my Facebook friends to feel like they have to read a duplicate if they don’t want to. So I won’t share the links on my FB page, but you should get a notice about the posts if you’ve subscribed to my blog or you read on a feed reader.)

As time went on I started wondering if people thought I talked about Dave too much on Facebook. Was I wallowing? Usually I would see a memory pop up and then share it and talk a little about it. But I decided I needed to also start talking about my life now, not just my life then.

Summer gave me more of a chance to get out and talk to people. It sounds so minor, but I’d walk the neighborhood and usually stop and chat with at least one person while I was out. I’d stop in a store or whatever and talk to somebody there. For someone who used to be really, really shy, this was more hard work, but I knew it was important for my mental health. I had to really make an effort not to isolate myself. I made myself get out and around people at least once a week, if not more.

A view from a recent walk in town

So here’s a little story. Last Thursday, my social plans were to go to a farm market that Dave and I used to frequent, and then to walk down after dinner and listen to some music in the park. (My town has this every Thursday evening in the summer, a different band/genre each time.) The band was doing covers of 80s/90s music and I figured I’d like that music pretty well.

I went to the farm market, and spent a lot of time talking to the woman who owns the farm. She was talking to herself at one point and then apologized to me for it, and I told her I talk to myself ALL the time. Well, I talk to Dave, really. Then she asked if I had a picture of Dave so she could remember him – and after she saw the photo, she looked stricken and said that oh yes, she remembered him, and she was so sorry. We talked about her mom, who died recently, and what an honor it was to be present with a loved one when they make that transition. It was just a really wonderful, heartfelt conversation.

As I was leaving, I realized I was kind of blocked in. There was a road crew paving the road I needed to take, and it was the only way out of the parking lot. So I walked right up to the guys working, told them I needed to turn right (because I didn’t know any other way home!) and they were so cool. They told me to go to the other driveway, they held traffic for me, and I was able to pull out just before where they were spreading asphalt. I mean, you have to understand – I would have agonized over this in the past. I would’ve been too shy to talk and ask questions. On that day, I didn’t even hesitate. It was fun, even!

Then after dinner I walked down to the park. Chatted with the people I decided to sit next to. Enjoyed the band tremendously. Chatted with more people as I left and walked home.

I got home that night and I’m not joking, I felt like a different person. I’d done all these things alone, had a really social day that didn’t feel exhausting or scary. I truly enjoyed myself. I didn’t once think how sad it was that I had to do this stuff by myself. I’d chosen activities I wanted to do, I did them, and I had fun.

In bed that night I thought about how truly awful those first months were; not just because I was grieving, my life had been completely turned upside down, I was alone and terrified, but because scary stuff kept happening that I had to deal with right after my husband died. My car tire kept going flat, the battery died and the car wouldn’t start, I had problems with my internet, couldn’t figure out how to get the whole-house humidifier to work when it got cold. I had to get used to driving in snow and on ice, when I hadn’t driven a car in over seven years because Dave did all the driving. It was a LOT.

I think all that stuff contributed to the fear I went through in winter, when I didn’t want to leave the house, drive or do anything. I was terrified of getting in an accident and being by myself when it happened. I’m not exaggerating when I say I thought I was going to be scared forever; I just thought that was my life from now on.

So all of that quiet time, which I’ve been lucky to have, believe me I know, has been working under the surface. I don’t think I’ll be “done” grieving or going through this process in a year; that’s only a couple months away. But I can see how I’m changing as a person, in small, meaningful ways.

It’s hard work. It’s scary. It’s what I need to do.

Dancing & Thinking Out Loud

I follow this dancer, Mark Kanemura, on Instagram. I first saw him as a contestant on So You Think You Can Dance ages ago, and then later I saw him on the same show when he was a dancer for Lady Gaga.

Last week he posted about the show coming back. (It had been canceled in 2020 because of covid, and then was rather suddenly – at least to me – resurrected.) In his Instagram stories, he posted links to some of the dances he did, and told stories about how incredibly difficult it was to be on the show. It was fascinating to me, and I rewatched one of my favorite routines of his just for kicks. He performed this piece, The Garden, with Courtney; it was choreographed by Sonya Tayeh (another favorite of mine). Her dances were always really visual and quirky and fun to watch.

So I’m watching this video and it dawns on me that the music is not familiar at ALL. Like, not one bit of it. But the dance itself was so familiar; I’d seen it quite a bit because they had them perform the dance a number of times in later shows. So why didn’t I remember the music?!

And then it dawned on me. I was deaf the summer that season of SYTYCD aired. I lost all of my hearing in April 2008 and got my cochlear implant surgery in July 2008. My CIs were activated in late August 2008. And it took a long time for things to sound the way they used to; music actually took years to come back and begin to sound good.

I think that’s why I was drawn to Mark’s style of dancing – it was really unusual and visually captivating. I watched that whole season not being able to hear the music, so I hyper-focused on the dancing itself. (On a side note, I also watched a whole season of American Idol without being able to hear anything and that was super boring! At least I had something fun to watch with a dancing show; my main impression with a singing competition was whether the singers were expressive or moved around while they sang.)

While I’m here, I’ll update on a few things. (I’m waiting for it to get a bit warmer before I go outside and mow the lawn.) Mowing the lawn, by the way, is less traumatizing for me now. For a while there, every time I mowed I thought about the day Dave got sick and I took him to the ER. (I had come in from mowing the lawn when I found him sitting in the dining room with his head on the table.)

Other things are feeling more natural too – driving around, running errands, going for walks alone. I used to feel incredibly self conscious every time I went outside, like everyone was looking at me. Those first few walks that I went on by myself were torture, just keeping my head down and getting it done because I felt like I had to get out of the house and try to act like a normal person.

I made it through a big task a few weeks ago – cleaning out Dave’s closet and the rest of his things. I donated everything that didn’t go to my son, daughter and son-in-law to Goodwill. I took all the boxes of his extra medical supplies and donated them to my clinic for their missions. Now I have all this closet and drawer space that I still haven’t filled up, but I’m slowly moving things around.

I still don’t turn down his side of the bed. Isn’t that weird? I leave it intact and just turn down my side. But I did rotate the mattress recently! I changed the oil in the lawn mower. I added coverage for service lines (water, sewer, electrical, internet) to the homeowner’s insurance. (I did this after reading a blog entry about roots in the sewer lines at an old house; my house is 120 years old and I do not have thousands of dollars to shell out to fix something like this, so when this new coverage became available I jumped on it.) I even tried to take my car in for an oil change and was told it was too soon, so I’m on top of maintenance in a big way there. (I assumed since it had been six months I should go in; my mechanic told me no, go by the mileage on the sticker they gave me. Since I drive so infrequently, I still have a couple thousand miles to go.)

It will be eight months on Friday. I have weeks where my grief feels as fresh as it did that first week, and weeks where I feel like I’m doing pretty darn good.

My cookbook club is rocking along, and we meet next Wednesday. This month’s cookbook is super fun, The Mexican Home Kitchen by Mely Martinez. I glanced at it and thought ooh, this looks too technical for me. Then I took a closer look and started making notes of which recipes I wanted to try. Every single one has been delicious, although I did confirm that I’m not a huge fan of frying things. (I made empanadas last night for the first time. Super tasty but eh, frying is kind of a drag.)

I have a couple ideas for what I’ll make, and for the first time it will not be dessert. I’m not sure how much advance notice we’ll get this month; last month we all posted our recipe choices on Monday and we met on Wednesday, which didn’t give much time for purchasing ingredients and testing the recipe, if necessary. That’s why I tested a bunch of possible recipes earlier this month; if I can, I try to pick a recipe that’s not being made by someone else. Anyway, it’s always a fun evening and the whole point is to enjoy the food and the company, so that’s what I focus on.

I am settling in to living alone and being alone. It doesn’t feel so painful now. Traveling alone is still not appealing to me; I am not sure I’m going to go to the beach by myself this year. The botanical garden might be all I can handle. But I did have a wonderful time at the Tulip Festival in Holland, Michigan with my daughter! I’ll close with a picture of us from that day. Smiles all around!

Support

When we let go of something, our hand opens and we are able to receive.

Letting go is the opposite of fearing death; it is trusting life.

– Rolf Gates

Every day I read a passage from a book called Meditations from the Mat, by Rolf Gates. I’m on day 302 now, so it’s been almost a year. Those quotes above were in the passage I read yesterday, and I really liked them so I copied them down.

I’m in a stage right now where everything seems to scare me, although I’m not writing about fear today (that’s probably my next post). Today what’s on my mind is support.

I turned to yoga and meditation last year to quiet my nervous mind. Dave always told me he thought it was a good idea; he was much more zen than me, and he knew how anxious I could get. After a while he told me he could tell it was making a difference.

And it did make a difference in how I looked at things. It was and is a source of support in my life. The advice I probably fall back on the most at this time is to dwell in the present moment. Every time I find myself fretting about the future or doing the ‘what if’ game, I stop and remind myself to focus only on the moment in front of me. I actually say this out loud; I spend a lot of time walking around talking out loud, just to hear and use my voice since I spend most days entirely alone (besides the cats).

Being alone like this is feeding my fears, so I’ve been looking around for sources of support. I’m finding it super difficult because of the pandemic. There are grief support groups that meet not too far from me, but they meet in hospitals which require everyone to wear a mask. I’m not a mask opponent at all, but I also can’t understand strangers when they have a mask on. I need to read their lips. (If it’s someone I know well, I am familiar enough with their voice that it’s not so much a problem.) So sitting in a grief support group and not being able to read lips is not going to work for me, at all.

I don’t feel like I need one on one counseling; mostly I’d like to chat with other widowed folks with the benefit of a moderator who can keep the topics moving – a fricking grief support group, in other words. Without masks! And close enough that I’m not facing a long drive, because long drives are not something I can do without terrible fear right now. That’s another challenge of living in a small town, with far drives to more populated communities.

So I turned to online grief support groups on Facebook. I joined two, and I was immediately overwhelmed with an outpouring of despair from sad, widowed people like me. I hung in for a couple of weeks, but I just could not take it. It’s all I can do to get through the days without my mood sinking, and I don’t have it in me to hold other people up just yet, or to even take in their sorrow and grief without it pulling me down. There don’t seem to be moderators or people who offer tips on getting through these early days of widowhood, which is really more what I’m seeking. So I unfollowed these groups and breathed a sigh of relief when my Facebook feed was no longer filled with people talking about killing themselves and how they can’t go on.

My mom is a huge source of support. She was widowed in 2000 when my dad died, and she knows what it’s like. She’s in Illinois, and we message each other daily. And I have so many wonderful online friends who reach out to let me know they are always there if I want to talk, and that is such a comfort. Truly. But in-person support is really hard to come by these days.

The pandemic appears to be getting worse, not better, so I’ve resigned myself to using books and online sources of support. I found a place called Soaring Spirits International that I joined today. They do something called Widow Camps (well, they did when the pandemic wasn’t a thing) and I thought, how cool! Of course, they are on the coasts and nowhere near the Midwest so I wouldn’t have gone anyway. But they have some forums that look good, and they sent a very helpful Newly Widowed packet to me in the mail.

I’ve read a couple of books – if anyone has any to recommend, I’d love to know of them! One was a little irritating because it assumes you have this huge group of friends/neighbors who are a constant stream of visitors in the early days, bringing casseroles and such. No. That was 100% not my experience; I got not one casserole, lol. (Which is actually better – I have so much food here, and a minimal appetite.)

As someone who is naturally shy about talking to strangers, it’s funny to me that I’m craving in-person contact right now. I’ll keep looking – who knows what opportunities might show up!

Let Me Invite You Into My Mind

I’m not sure if this a ‘difference between men and women’ thing or just a ‘Wendi, you are crazy’ thing (most likely the latter), but here’s a conversation Dave and I had last night:

I just finished reading this article about body composition and was muttering to myself, “Yeah, I wish it was that easy.” Then I turned to Dave and said, “Listen to this.” I read the article out loud – it’s short – and waited for his reaction.

He was nodding along in agreement. I told him that I agreed with the basic concept too, which boils down to this synopsis at the end:

“… So toss your scale out the window, forget about nonsense like body mass index and “weight loss” and instead use your body and transform it into one that looks and feels great.”

Dave knows that I weigh myself every day. He also knows that I try not to let it get to me, but if I’m either on a plateau or, even worse, an upward trend, I can’t help but get upset and try to analyze what’s happening. He always tells me to just stop weighing myself daily because body weight fluctuates so much due to various reasons (something that is also mentioned in the article). My reasoning, though, is that I want to know if I’m trending upwards so I can make adjustments in my diet or exercise before it gets out of hand. I don’t want to weigh myself once every couple weeks and realize I’ve gained five pounds or something; I want to stop it before it gets that far.

Who are we kidding? I would never wear shoes when weighing myself!

On the other hand, my main goal was to get healthy and I feel like I’ve achieved that. I’m really trying to maintain that, because it was a lot of work and it took a long time. I’d love to weigh less, but I’ve just been bouncing around between the same three pounds, up and down, for about six months now. Maybe this has to be good enough at this point.

What I pointed out to Dave, though, was that the article talked about how outdated BMI is and how it doesn’t take many other factors into account … yet it’s the tool that medical professionals use. On the one hand, they exhort us to toss our scale out the window and not care about BMI, but on the other hand, if my doctor is using it as a guideline then I’m kind of screwed.

“Here’s the way I picture it,” I told Dave. “I go for my new patient visit next month. I already know they’ve got my height down as five feet tall. [I was 5’1” at my other doctor’s office, and I used to think I was 5’2”, so this is like losing TWO INCHES of height. It also dramatically changes my BMI results.] I weigh myself at home in my underwear, but at the office I have clothes on and I know that adds at least three pounds. I would have to weigh 125 pounds, in my clothes, on their scale in order to be in the ‘normal’ BMI range. I have not been that weight since before I had kids and I know I won’t be that weight next month (or probably ever). So I’m worried that the doctor will yell at me and tell me to lose weight, even though I’ve lost 34 pounds in the past year and a half.”

Dave just looked at me, incredulous. “Who gives a shit what the doctor says?!”

“Well, how would you react if your doctor told you to lose weight?” I asked.

“I’d just say, ‘This is who I am.’ They can’t tell me what to do. Only you can make yourself feel this way; don’t give them that kind of power.”

I shook my head. “I can’t help it – I wish I didn’t care about it, but I do.”

Even crazier, I have never really been yelled at by a doctor for my weight, even for all the years I was obese. The only time one of my doctors said anything was when I was 43 pounds heavier than I am now. And then she just casually said, “Well, you might want to work on your weight a bit” in the context of a conversation about my high cholesterol. Probably the one time my weight was a big focus at doctor’s appointments was when I was pregnant; they did kind of get on me for gaining weight then (I gained 30 to 35 pounds with each kid and started off in the 120 range, so I was not overweight to begin with). That’s also when my high blood pressure started.

I also have no idea what my new FNP will really say. She may not even bring up my weight at all.

And there we are. What I wouldn’t give to be able to just swap brains with Dave for a day and not worry about stupid things!

Living With Someone Who Has Hearing Loss

I’ve written about this before, but it’s on my mind again because tomorrow marks 15 years (15 years!!) since the day Dave and I met in person.  Before I met him and started hanging out with him, I had really never been around someone with a hearing loss.  I learned the hard way that personally having a hearing loss did not mean I was automatically aware of how to communicate with someone else who was hard of hearing.  Kind of like how going deaf didn’t suddenly give me the power to understand and communicate in sign language.

I’m the only person in my immediate family with a hearing loss, so I grew up knowing they could help me out if I didn’t hear something.  All of my friends, boyfriends and my first husband had normal hearing.  I was 33 when I met Dave, so I’d had plenty of time to get used to having other people help me out when my own ears fell down on the job.  That was the first big eye-opener for me.

I’d hear something and turn to Dave.  “What was that?”  He’d shrug and say, “Beats me!”  I’d leave the water running in the sink, walk off and forget about because I didn’t hear it.  He didn’t hear it either; who knows how much water we wasted before one of us noticed the silent stream gushing forth from the faucet.

We’d go out somewhere, and I would actually have the advantage because I was better at reading lips.  The cashier would give me the total, and I wouldn’t really pay attention because I was used to the person I was with being able to hear and relay the amount to me.  Dave would be silent – he had no idea either.  I learned to be more vigilant, especially in noisy situations.  I couldn’t hear well, but I could read lips and thus became the ‘hearing person’ in that situation.  Talk about role reversal!

I was used to just talking, probably at a lower volume than normal since my own voice always sounds loud to me (whether I had hearing aids or CIs).  I didn’t bother to make sure Dave could see my face, or that I was even in the same room.  I’d get no response at all from him and I’d realize, “Huh.  What an asshole I am – I’m not even attempting to be considerate!”

It probably took a month or so for me to get used to this, checking my annoyance if he didn’t hear me at first – it was my fault, for not doing what I knew needed to be done for him to understand me.  It was so weird to realize I was really bad at being considerate and thoughtful when it came to communicating with the man I loved.  It truly was not second nature at all.

When we first met, my hearing loss was a little more severe than Dave’s but in the opposite ear.  So he wears a hearing aid in his right ear; I wore mine in my left ear (and the transmitter on my deaf right ear – they were wireless bi-CROS aids).  Dave just wears the one hearing aid and is profoundly deaf in his left ear.  So we got used to positioning ourselves so our good ears were next to each other.  We have a double computer desk and Dave sits to my left; when we watch TV or movies, I sit on his right side.  When we go for walks, I’m on his right side.  If we’re both in the car, he always drives (that way his good ear is next to me).  The only time I drive now is if I’m going somewhere alone – I’m getting a little spoiled, always being able to kick back in the passenger seat!  🙂  I contribute to our road trips by operating and translating the GPS system for him – half the time he can’t understand what it’s saying, and the other half of the time he chooses to be ornery and ignore the directions while yelling at Maggie (our Magellan GPS…you’ve named yours too, right?!) and telling her she’s crazy.

I learned that even though our hearing losses were a little bit different in severity, being able to read lips gave me the advantage in noisy situations.  I got used to being the one to help if he didn’t hear a question from the waitress or cashier or salesperson.

So over the years I learned the tricks to communicating with a hard of hearing person.  Make sure they can see you when you talk, and make sure you’re talking clearly…not too loud or soft, no exaggerated lip movements, not too fast or too slow.  Dave tends to leave his hearing aid out, especially in the morning, so I try to remember to look at his ear and see if he’s wearing it.  If not, I talk louder and stand right in front of him.

If I’m behind him, I’ll gently touch his arm to get his attention.  Sometimes this still scares the crap out of him, but I learned a gentle touch is better than a tap or grabbing his arm or something.  If there’s a really loud noise (coffee grinder, loud music), I’ll wait until it’s over before I talk.  Sometimes I can’t tell if he can hear me or not, so I ask.  “Can you hear me?  Am I speaking clearly enough?”  We both sometimes still do the deaf nod thing with each other, but by now we can usually tell when the other is faking and I, personally, derive great joy from calling Dave out on it.

When I went deaf (almost five years ago now), Dave was so amazingly patient and thoughtful.  He never expressed a single iota of frustration over having to repeat himself.  He happily learned signs with me and was willing to try whatever I was interested in (we even watched a DVD on cued speech).  He never told me, “It’s not important; never mind.”  I think patience and kindness are so important – it goes such a long way when someone wants to communicate with you and you take the time to do what needs to be done to facilitate that.  No eye rolling, no exasperated sighs, no sharp tone of voice – just kindness and patience.  It’s easier said than done!

Now I’m in a weird position where sometimes I hear much better than Dave does, even though I’m technically deaf.  I have a much better time understanding people with accents, using the powerful combination of my cochlear implants and speech reading.  Many of Dave’s doctors have accents, and they share information we really need to know, especially with his Hepatitis C treatment coming up (it starts April 10^th).  Whenever he has an appointment with a specialist or for anything other than a routine checkup, I go with.  I take notes.  I make sure he doesn’t miss anything, and that we advocate for whatever he might need.

It’s been 15 amazing years, and he has taught me so much.  It really all started the first time I realized this was going to be a different experience, dating a guy with hearing loss.  He was adding milk to my coffee, and he told me to say ‘when’ because he didn’t know how much I wanted.  He poured; I said, “When.”  He kept pouring, and I thought, What the heck?!  Why isn’t he stopping?!  It finally dawned on me…he didn’t hear me!  I yelled, “WHEN!” and he looked over, startled, just as the cup was about to overflow.  And so it began…my hearing loss education.  🙂

Hope I Die Before I Get Old

Well, I was going to write about how the world didn’t end today, but that seems a bit Five Minutes Ago now.  Instead we’ll tackle the always beloved topic of aging.

I started thinking about this when I was shaving my legs this morning, and tried to wipe away what I thought was a hair on my leg.  (An aside:  It’s pretty dark in our shower and my bifocal contacts don’t work well in bad light.  It’s hard to see things close up so shaving is always interesting.)  After a couple swipes, I looked closer and saw what I thought was a varicose vein.  !!

It’s always startling to get these unavoidable signs that we’re getting older.  Some things I’m used to – gray hair, for instance.  I think I was 17 or 18 when I found the first gray hair nestled in with the rest of my very dark brown curls.  Over the years the gray is overtaking the brown, but I still color my hair so I can pretend it’s not happening.  The need for reading glasses/bifocals cropped up when I first hit my 40s, so I’m used to it now although it gets a little worse every couple of years.  The best thing I ever did was get multifocal contact lenses, which helped do away with the reading glasses and gives me the illusion of having young eyes again.  As long as I have good light, that is!  And obviously, I have the hearing loss thing down pat.  🙂

But with every birthday that passes, I find myself thinking more about being older.  It’s hard to believe in only two years I’ll be celebrating my 50^th birthday.  I like to think I’ll handle it with grace and good nature.  Turning 30 was no big deal to me; I was so preoccupied with newborn Paige, who came into the world exactly two weeks before my 30^th birthday.  Turning 40, though, was a tough one.  I kept doubling my age and thinking, “I’m halfway to 80!  Oh my God!”  Once you get to the point where you’ve probably lived more of your life than what you have ahead of you (going by standard life expectancy, that is…who knows what could happen tomorrow?) it’s hard not to be a bit introspective.

I don’t really have many wrinkles and usually I look in the mirror and like what I see.  I could stand lose a few (er, many) pounds but in general, I don’t think I look too old.  Then I’ll see myself in a photo and think, “Good God, is that what I look like?!”  Even though my weight hasn’t changed in many years, I can look at a photo of myself from 3 years ago (same weight) compared to now and think that I just looked so much better back then.  Recently I saw pictures we took over the summer and told Dave sadly, “I have jowls.”  He looked at me like I was crazy and I continued, earnestly, “Really, look at me.  I look like a troll now.”  As I fought back tears, he laughed and told me that I never see myself the way others do – I’m always too hard on myself.  But it’s enough to keep me behind the camera rather than in front of it, or with as much of myself possible positioned behind someone else in a group photo.

I know we all get old, and it’s what’s inside that counts, and all that good stuff.  But I still remember so well what it was like when I was younger, and it’s hard to believe so much time has passed.  I remember on my 25^th birthday thinking, just out of nowhere, that someday I was going to wish I was this age again…old enough to not be dealing with teenage angst, young enough that my youth was enviable.  I can remember being in junior high, when the teacher had us all calculate how old we’d be in the year 2000.  When I realized I’d be in my 30s, it seemed so far, far away…like it would never really happen.

Ah well…time marches on, and every day I accept the changes in my aging body a little bit better.  And 50 is the new 30, as they say.  And Dave swore what I saw was not a varicose vein, and after I Googled it I had to agree with him.  Guess I’ll live to fight another day!

Perspective

Three years ago, I woke up on this day and put on my hearing aids.  I didn’t really expect to hear anything; the day before was my doctor appointment/hearing test when I found out I was totally deaf in both ears.  But still, there was that little hope that maybe they were wrong, maybe my hearing was coming back.

Just the act of waking up and remembering my hearing was gone made me sick to my stomach.  Another day of working so, so hard to understand what everyone was saying.  All I had to rely on was my speech reading skills, with a few signs and finger-spelling tossed in.  My mind was just in constant turmoil; I wanted to curl up in bed and cry and refuse to believe this was happening to me, but I had my kids to think about, candles to make and ship.

The first entry in my blog was called “Hindsight is 20/20.”  In that entry, I was looking back at that day, wondering if it would have mattered if I had realized all those ‘weird hearing’ moments were actually a sign of things to come.  Maybe I would have gone to the doctor sooner…would that have helped preserve some of my hearing?

Now, though, I’m thinking that I wish I could have looked forward from that day, or that time in general.  If I could’ve seen myself today, right now, sitting here typing and hearing the keys as I hit them, hearing the door slam as Dave goes out to the garage, hearing Toby’s doggie nails as he walks across the floor…well, I could’ve been spared so many days of sadness.  I would still have grieved losing my natural hearing, because nothing can bring that back.  But if only I had known that this absolutely amazing technology would let me hear things I’d never heard before!

I was talking to Dave about the fully-implantable CIs they are working on –you have to have surgery every 10 years to replace the implant because the batteries only have a finite life (of course).  As we debated the pros and cons, I realized that I really like the situation I have now.  I really don’t mind being in my ‘natural’ (deaf) state when I’m sleeping, for instance.  If I had the added input of noise and sound, I’m not sure how well I’d be able to sleep.  Even when I still had some hearing, I took my hearing aids off at night and had a much reduced level of sound coming in.  I’ve basically never had full hearing while I slept.  I definitely wouldn’t want to have surgery every 10 years!!  On the other hand, it would be awesome to be able to hear while I was swimming, and to not worry about getting my CIs wet if it’s raining.

Right now I feel like I have the best of both worlds.  Who knows what the future brings?  Someday I might write another blog entry referring back to this one, talking about all the wonderful advancements I wish I had known about back on April 17, 2011.  😉

Living With Cochlear Implants (2-1/2 Years Later)

(Is it just me, or is the first sentence of a blog entry the hardest one to write?!)  Okay, so it’s been almost 2-1/2 years since my cochlear implants went “live”, and if you’re curious about life with cochlear implants a few years later, this is what it’s like for me.

I wake up in my natural deaf state, and no longer cringe at the thought of how loud it’s going to be when I put on my processors.  I’m not sure if it’s just that my last mapping was extra-excellent or what, but usually as months go by, things just sound louder and louder to me.  I’m only going once a year for mappings now, and by the time I went in Sept. 2010 I was pretty much keeping my CIs on the ‘background’ setting all the time.  This setting compressed a lot of background noise and just kept things at a better level for me.  That’s way in the past now.  I don’t even change to ‘background’ in the car or stores automatically, the way I used to.  Now I pretty much stay on my regular listening program (at 12:00 for volume) from the start of the day to the end.

Listening with just my right ear (the worst one) is better now – voices no longer have the computerized, Darth-Vader quality to them.  But I do really need both ears to understand without lip reading.  If one of my batteries dies, or I slip my headpiece magnet off because the dog is barking like crazy (as I just did!) then I need to lip read to understand speech.  With both processors on, I can generally carry on a conversation with someone in the room without needing to look at them.

The phone will never be my friend.  I know there are people with CIs who can just chat away on the phone but I assume they don’t have the phone phobia that I have – I just hate the phone and I always have.  The only way I’ll feel comfortable on the phone is if I can perfectly understand every word I hear, so I don’t have to stress out about it.  That’s not the case, so talking on the phone is my absolutely least favorite thing to do.  I can do it – especially with the CapTel phone (this phone captions what the other person is saying, although there’s a bit of a lag and the captions are often not accurate) – but I only use the phone if I absolutely have to, for the shortest amount of time possible.  Like I said though, this is partly because I’ve never been one of those people who likes the phone.  I think a couple of other things play into it for me – the fact that I still have a high frequency loss even with my CIs, and the fact that I hear better with two ears than one.  I know I could probably do some kind of convoluted thing with a neckloop and putting both my CIs on T-coil to get the bilateral effect (I think…I’m not even sure about this) but the phone is just not important enough to me to make that kind of effort.  Give me email or texting, thanks!

Music is pretty good now, especially with music I already know.  I do practice listening to music on Pandora – I have a couple stations set up so that they play music I’m familiar with (or that is similar to that music) and I pop some headphones on and just listen.  I find that if I don’t do this, the quality of music does go down for me.  It also sounds better through headphones or Direct Connect.  But it has improved so, so much since the early days of listening with my CIs.  It used to just sound like crashing noise, especially music coming through the television.  For instance, we watch House and the intro song is Teardrop, by Massive Attack.  I always really liked this song before I went deaf, but after my CIs were activated it sounded truly horrific.  To be honest, I usually fast-forward the intro credits/song with our TiVo but lately I’ve been known to let the House intro play through, just so I can enjoy how good that song sounds now!

I’m tempted to do the list of things I can hear now, but yeah, that can be pretty boring to read.  Still though, it’s pretty cool to jump out of my seat when the dryer buzzes (downstairs!!) or to look around and wonder what the heck that noise is, only to see it’s my cat (way over on the couch) licking her paws.  Come on – I never even knew that made a sound!

I don’t have superhuman hearing though … last night Paige was sputtering and exclaiming about the fact that the neighbors were having a party (on Saturday night, geez) and playing their (crappy, according to her) music too loud.  Dave and I listened for a minute, shrugged and said we didn’t really hear anything.  “But you’re deaf!” was her response, spoken with classic teenage exasperation.  I had to laugh – she’s right about that!

So… identity, something I think I probably talked about before but it could use some updating.  I imagine most people with cochlear implants question their identity sometimes, as far as the “Deaf or not deaf?” question.  Before I went deaf in April 2008, I said I was hard-of-hearing or hearing impaired; that label doesn’t bother me because yeah, my hearing was impaired.  It didn’t offend me to say it.  And now when I wear my CI processors, I hear even better than I did back then…so do I still say I’m hearing impaired?  Nah, I say I’m deaf, because I am.  What I am when I wake up in the morning…I’m deaf.  No big deal, and it doesn’t bother me.

So I’ll usually tell people, “I’m deaf, but I hear through cochlear implants.”  I might explain that it helps me to lip read as well (if I’m dealing with someone that has an accent or a voice I’m not used to, I use every tool I can to help me understand).  Most people accept this without even questioning it and just continue to talk to me as they already were, maybe making sure to look up when they are speaking.  But a few times I’ve had people just stop and get visibly nervous – one guy stopped using his voice completely and would just nod and gesture to me.  That’s fine too – I know sometimes they hear the word ‘deaf’ and just stop listening after that because it can be scary to wonder how to communicate.  If I get a chance, I’ll point out that my CIs do help me to hear to put them at ease.

My tinnitus is GONE, folks.  That was probably the hardest part of being deaf – it was not quiet like I always figured it would be.  It was constant, crazy noise all day and all night, until I went to sleep.  There was never any relief at all.  It’s hard to explain what it’s like to hear all that noise and never be able to escape it.  I’ve always had tinnitus but in the past, I would put my hearing aids on to get rid of it.  My brain needed to hear something in order to settle down.  Once I went deaf, there was nothing to hear.  After surgery (but before activation, which was a month later), I still had tinnitus but the quality changed.  I heard pretty much the same few sounds rather than a wide variety of sounds (music, talking, etc.) like I used to.  Once I was activated though, my tinnitus disappeared within a week or two.  It is really peaceful now if I have my processors off, because I hear actual silence!  Every now and then I might get a soft sound, whooshing like the ocean or a couple of beeps or something, but it’s so soft and so rare that it just doesn’t bother me.  Even at night when I take my processors off, the most I might get is some soft sounds but it’s barely enough to be noticeable…for all intents and purposes, I consider the tinnitus gone (for now, and hopefully forever).

One more thing I wanted to touch on – captions.  I’ve seen a few people ask if getting CIs means you don’t need captions on the TV anymore.  Like everything else, this is going to be different for each individual.  For me, I still need captions.  I don’t need them if the person speaking is visible on the screen and I can read their lips, but for voice-overs I still rely on captions.  Sure, I can catch maybe 50% of what’s being said without captions, and I do practice this…I glance down at the captions only when I need to.  We’ve also gone to some movies without open captions – we saw Avatar and Tron in the theater the first week they were out, before the open captioned versions came to our area.  I didn’t catch everything but caught enough to follow the movie.  So I definitely do better in this area with CIs than I did with hearing aids, but I do still rely on captions.  However…my husband is also hearing impaired and my daughter loves captions (even though she doesn’t need them) so our TV will always, always have captions on!

Anyway, if you’re reading and you recently got a CI, it gets even better and better.  Even once you stop going for mappings every couple months, it still gets better.  What I hear now is what I remember hearing before I went deaf…and then some.  I could not ask for more!

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.

One Year

One year ago today I saw the doctor and it was confirmed:  I was profoundly deaf in both ears.  I consider yesterday, April 15, to actually be the ‘anniversary’ of my going deaf because I knew my hearing was totally gone on that day.  I just happened to have the doctor appointment on the 16th.

You know that feeling of waiting for the other shoe to drop?  Kind of a vague fear of a future catastrophe…not that you want it to happen, of course, but feeling like you just know it will happen someday?  For me, it was going deaf.  For 15 years I had this very repressed, subliminal fear that I would lose all of my hearing…and then what would I do?

Although I’ve lived with hearing loss pretty much all of my life, my hearing was stable from the time my loss was detected, at age 4, until 1993, when I was 28 years old.  I was so used to it, and wore the same hearing aids for so many years, that I didn’t even really notice it.  It never occurred to me that my hearing might get worse.  We had no idea why I lost my hearing to begin with but it was assumed that it was from a high fever when I had roseola as a toddler.  I figured it was a one-time shot and never gave it another thought.

Then in 1993 I suddenly lost the little bit of hearing I had left in my right ear.  It was shocking and unexpected.  Although I already had a severe-to-profound loss in that ear (so it wasn’t like I lost a ton of hearing) it was still an earth-shattering event for me because that was the ear in which I wore my hearing aid.  My left ear was considered good enough, with a moderate loss, to not need amplification.

In one fell swoop I was faced with the fact that my hearing loss was possibly progressive and might get worse in the future, and dealing with suddenly only having one ear to hear with since I had no ear mold or hearing aid for my left ear.  It took a good two weeks to get a new ear mold made for that ear and to be fitted for a completely new hearing aid, a bi-CROS system.  During that two weeks I actually tried to squish the old ear mold into my left ear and wear my current hearing aid, so that I could hear at work and during social events.  (I specifically remember a baby shower I attended for my cousin during that time, and how isolated I felt because I had no idea what anyone at my table was saying.)

Once I tried the new bi-CROS hearing aids, though, I was amazed.  The transmitter I wore on my ‘dead’ right ear transmitted sounds via radio frequency over to the receiver I wore on my left ear.  Once again I had the sensation of hearing from both ears, and my world normalized again.

The first couple of months after I lost my hearing the first time were scary for me because nobody could tell me why it had happened.  I wasn’t sick and had no warning signs.  They did a CAT scan and blood tests, tried me on a regimen of steroids to alleviate any possible swelling that would’ve caused the hearing loss…nothing worked and no causes were found.

After a couple of months passed and my hearing stayed the same, I stopped actively worrying that I would lose more hearing.  The fear sank to the far recesses of my brain and remained there.  Every now and then I would bring it out and toy with it:  How would I deal with further hearing loss?  Would I feel like life wasn’t worth living?  Would I become bitter and nasty to my friends and family?  Would I retreat and become a recluse?

At the time, I didn’t know anything about cochlear implants.  I learned about them in the late 1990s and even then, it seemed like they were only an option for people with no hearing at all.  From what I could tell, they would enable a profoundly deaf person to perhaps hear some loud environmental sounds but that was it.

Life went on and then the other shoe dropped.

In a way, there was a weird sort of relief that this had happened and I survived it better than I ever expected to.  I look back and say, “Oh!  I went deaf and actually dealt with it better than I thought I would.”  It’s over now…I can’t get any more deaf than I am, right?

I do still have this little fear that something might happen to my implants so they don’t work anymore.  Becoming deaf as an adult is totally different from growing up in a community of deaf people who use sign language.  Since my world is a hearing world, I have to adapt to that.  Dave and I have a version of sign language that we use and it works for us, but it’s not ASL.  I can’t benefit from a sign language interpreter, for instance.

For now, all I can do is assume things will continue the way they are and my cochlear implants will continue to work for me.