Yesterday I pulled up to my sister's house just as they were getting ready to go to Joe's Diner to take advantage of a Living Social coupon, so I hopped in the van and joined them. An audiobook was playing and I tried really hard to pick out some words, but when I started hearing things like "smash the pancake" and "skunk in soccer universe," I knew it was futile. I even thought I heard "Potter" and was convinced I got one word right, but since I was hedging my bets and thinking it was a Harry Potter audiobook, all I did was demonstrate the power of suggestion. The audiobook was, in fact, from the Percy Jackson series and Harry Potter does not have a cameo.
It gave me a neat idea, though. I decided to pop in one of the Harry Potter disks and see what words I could pick out from the audiobabble and then, in a few months when my implant is activated and my brain is hopefully processing sounds more efficiently, I'll listen to the same passage and see what, if any, difference there is. So I popped into my computer disk 11 from Harry Potter and the Deathly Hallows and turned up the volume. It started at Chapter 24b "Malfoy's Manor," and this is what I got -
Blah blah blah blah blah blah … Said … blah blah blah blah blah blah blah blah blah … blah blah blah … blah blah blah … blah blah blah … Get …. blah blah blah … blah blah blah blah blah blah blah blah blah blah blah blah … Said Ron … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … I want you to … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … blah blah blah … blah blah blah … She asked … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … group of pains … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah …world book… blah blah blah blah blah blah … chair …. blah blah blah blah blah blah … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … walking postcard … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … Harry, Harry Potter … blah blah blah … books that you … blah blah blah blah blah blah blah blah blah … blah blah blah … means …. blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah … gray back … blah blah blah … blah blah blah blah blah blah ... said Hermione … blah blah blah … said Ron …blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah moves the night … blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah.
Yep, that's what it is like for me to listen without the benefit of lip-reading or good context cues. This is what I hear when announcements come on over a loudspeaker, when I am in a class at the gym, when I am with a group of people having multiple conversations, when I try to pick out lyrics from songs.
Between my lip-reading abilities and a skillful, yet prudent, employment of the "deaf nod," I bet I fooled a lot of people over the years into thinking my hearing loss is not that severe. Didn't I? Admit it! :) Several years ago, one of my sister's friends asked her, "Is Carolyn's hearing getting worse?" and Kelly replied, "No, she has just stopped pretending!" I'm really, really good at faking it.
MTC.
This has been a rougher process than I thought it would be, truly. I thought that I would feel like going back to work this week and that I would even feel guilty for not doing so, but I am whupped. I can't imagine what Monday is going to be like because I can't imagine feeling like myself again by the end of the weekend. I think I am going to be very, very tired by 4 p.m. Monday.
I've been struggling with anxiety, depression symptoms, all that fun stuff. A friend of mine is the psych field told me that is not uncommon after something like this, but I feel like I should be excited and happy. Instead, my thoughts won't stop racing and I can't quiet them down. I have extremely dark thoughts at times like these. I often get a loop in my brain going, "I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, I hate myself, I am so stupid, ihatemyselfiamsostupid
ihatemyselfiamsostupidihatemyselfiamsostupidihatemyselfiamsostupidihatemyselfiamsostupidihatemyselfiamsostupidihatemyselfiamsostupidihatemyselfiamsostupid...."
Wash, rinse, repeat. It would be comical if it wasn't so grim. If any of my nieces or nephews - or any of my loved ones - revealed such a thought process, I would be horrified that they couldn't see themselves for the wonderful treasures they are and I am sure they feel the same about me, but, this is my reality. This is how uncomfortable I am in my own skin.
I wonder how much of my poor self esteem is rooted in my hearing loss and if its salvageable. I met with another woman who had a severe/profound hearing loss and had a cochlear implant in her 40's and she told me that she became more and more withdrawn - severely so - until her husband said to her that he didn't even know her anymore and she was like, "What is happening to me?" She said it all changed with her CI.
I don't want to have that kind of expectation, but I hope, really hope, that it will be enough of a success that I don't feel so much like I am going through life in the shadows anymore. I hope I can stop feeling that I am not really here or a part of anything because I feel so disconnected. Given that I have Bipolar Disorder II, though, I have to keep my expectations low for how a CI may benefit me from a psychological perspective. It's not going to be like a miracle pill.
I thought that I had come so far in accepting my Deafness and how it shaped me, but going into Deaf Ed and then having the cochlear implant surgery done is bringing a lot of issues roaring back and I don't much like that part. It's scary.
It really occurred to me today that recovery is not linear. I felt so well yesterday that I thought I had passed the hump. It's not so simple a matter as walking the line from point A to point B. Today I not only feel incredibly run-down but there is more discomfort in my surgery area than yesterday.
When I run my fingertips over the implant area, it feels a bit like what I would imagine Frankenstein's head feels like. Lumpy and protruding in odd places. Not that I give a lot of thought to what Frankenstein feels like. Seriously. That would be really sick. Although now that my thoughts are going there ... when Frankenstein was being created, I wonder how large of a penis he got? If you have your pick of appendages, I would hope you wouldn't shortchange your creation. He might want to get a little nookie someday, you know? Forget all that "It's not how deep you fish, it's how you wiggle your worm," bullshit. Size matters!
I kid! I kid! So please, if you are a male who is not as well endowed as John Holmes, don't walk away from this blog feeling like a lesser man. Think of it as a little payback for the last time your eyes popped so hard at Scarlett Johanssen's cleavage that you got an elbow in the ribs from your significant other.
(And yes, I realize for you purists out there that Frankenstein was actually the doctor who created the monster and not the monster himself, but it just doesn't have the same pow and sizzle to say "it feels a bit like what I would imagine the head of the monster that Dr. Frankenstein created feels like," does it? Does it???)
The hair is starting to grow back from where my head was shaved for the implant and it's all fuzzy there which feels really cool to me. I always did love a buzz cut. My Grandpa Schmid had one and when I was a girl, I loved to run my hand over his head. I like to think that is why I later developed such a fondness for military hairstyles, and thus military men, that my mom dubbed me the "One Woman USO."
I almost made it through the day with no pain pills yesterday, but I ended up having to take one last night. I was just hyper aware of the discomfort and couldn't sleep. Maybe tonight I'll make it.
My tongue is still a huge, swollen mass that feels badly burned. It hurts to eat almost as badly as it hurts to brush my teeth. Unfortunately, that doesn't stop me from (over)eating, but I seriously think maybe I need to go on a liquid diet until it feels better because everything else hurts my mouth.
But yeah, back to my earlier thought. Recovery is not linear, no matter what. Whether it is alcoholism, bipolar disorder, or just life. It's never a straight path, is it? That is both the beauty and the arduousness of it all.
MTC.
It is Day 8 after surgery and I finally am not completely aware of the pain/discomfort in the left side of my head!
I was a bit worried about the pain pills given my addiction tendencies. I mean, hello! Recovering alcoholic with replacement addiction issues! I could totally see myself turning into the Codeine Whore on the Street Corner, pimping my old, sad body out for the next mind-numbing fix of pain pills.
Mercifully, especially for my brother who would be horrified and is probably even now clutching his hair and shouting, "TMI! TMI!," the pills don't really do that much for me.
I got 40 of those oxycodone babies with a stern warning on the bottle not to exceed 8 in a 24 hour period. A little math there would show that I could have been done with them in 5 days and still been within prescription guidelines, but it is 8 days later and I still have about 8 pills left. There were a lot of 8's in the last couple of sentences. It must mean something significant, like I'm going to win the lottery in 8 days. I need to remember to buy a ticket.
A weird side effect of the CI surgery is that I have a super bad taste in the left side of my mouth. Apparently there is a taste nerve near the surgery site. There is also a facial nerve. While drilling, the doctor either had to go near or actually touch one of the two and he opted for the taste nerve. Good call, doctor. Seriously. Bad taste is better than a drooping face. I'm getting old and wrinkly enough; I don't need any help in that regard.
And now my tongue is all swollen and disgusted and feels like I burned it badly. Like when you gulp hot chocolate before it has cooled and end up frying the skin cells on your tongue. It hurts to brush my teeth. It burns! It burns us! Sorry, channeled a little Gollum there. I don't know if that - not the Gollum channeling, but the tongue issue - is from the taste nerve also or from the pain meds. Seems like I might have a sensitivity to oxycodone given that it makes me itch and another possible side effect for oxycodone sensitivity is a swollen tongue. Nice.
Makes me think of that Peanuts cartoon when Linus is all like "I'm aware of my tongue!" and makes Lucy aware of hers, so of course she wants to slug him a good one. Slug and tongue are not two words that reside in harmonious juxtaposition, by the way. Now I'm thinking of my tongue being slug-like. A huge, oversalted, dried out slug. But look on the bright side ... at least I'm not Codeine Whore!
MTC.
I tried to think of a clever blog name and let me tell you, that was tough. All the cool names that popped into my head are already taken. Purple Cow? Gone. Wonder Muffin? Taken. My "Bad" Life (which I wanted to be a play on Bipolar, Alcoholic, Deaf)? Yeah, right.
So then I started inputting every combination of words that had anything to do with things I like and "Psychedelic Sunflower" was the first free one. I was so excited to finally have a catchy - and available - name that I didn't really think of the ramifications. It's trying a little too hard, isn't it? I've opened myself up for a lot of teasing. It's kinda me, though. Anyone over 30 who picks lime green for their cochlear implant processor color has a touch of psychedelia in their personality. I think I will keep it.
I've tried blogs before and never stuck with them. Anyone who remotely knows me won't be surprised at that. Follow-through is not my strong point. I have a lot of goals for this blog, though - achieving lasting weight loss and physical fitness, managing my bipolar symptoms, dealing with recovery from alcoholism and finally, sharing my cochlear implant experience with my friends and interested acquaintances.
That's a lot, huh?
Any one of those would be big. Weight loss. Deafness. Bipolar Disorder. Alcoholism. And I have all four to contend with. Almost makes me want to curl up in the fetal position and suck my thumb. I was never a thumb sucker, though. That was my brother and sister. My brother especially. My sister was also a hair twirler. And she liked to chew on non-edible things, including the feet of her Barbie dolls. I was not a sucker of thumbs, chewer of non-edibles or twirler of hair, but ... I seem to be getting off-track here ... rearrange! Focus! Deafness! Cochlear implant!!
I lost most of my hearing when I was four. Meningitis. I'm 42 now. I have no discernible hearing in my left ear. My right ear has a loss in the severe-profound range and I have worn a hearing aid in that ear for 38 years. I've managed to get by just fine and thanks to a sharp mind and keen intellect (thanks Mom and Dad!), I've been pretty successful.
I'm an exception.
I didn't know the statistics of this until I started take classes in Deaf Ed, but most deaf people with, oh, a moderate or worse hearing loss typically are not close to equivalent to most of their hearing peers. As students, their reading levels are significantly lower and they are much more likely to go on to both forgo college and accept lower paying, more menial jobs.
So I have been lucky.
Nevertheless, even though I grew up in the hearing world, I have always thought of myself as "deaf," probably more so as an adult. I have a strong sympathy for Deaf culture and individuals and the idea of a cochlear implant was actually pretty repellant to me for a long time. Deaf culture... that's a whole other blog post or two. We won't get into it here.
When I started taking Deaf Ed classes, I was exposed to a lot of information about CIs that I wouldn't have sought out on my own. I also had a wonderful classmate named Megan who has two children with hearing loss. Her daughter is bilaterally implanted and the impact on her life has been amazing. My thinking started to shift from "CIs are evil" to "Maybe CIs can be life-changing for some people."
Then one weekend in July 2011, my cousin Janet came up from Florida. She was my mother's brother's daughter and I had never met her before. More relatives joined the fun. I remember sitting in the blue chair in my mom's living room, all these excited, happy voices flying past me in multiple conversations, and feeling utterly and totally alone. It has been like that for me a lot in my life. And I thought, "Why not a CI? If it would help me be a part of life and not some person who has to lurk on the outskirts of most social activities, why not?"
And on November 15, 2011, I had a cochlear implant done on my left ear.
MTC.
