Saturday, June 20, 2009

Happy Father's Day, Pops!

May 2007 - Pops visiting newborn Aidan and big sister, Skylar in Texas.

Happy Father's Day, Pops!
I have a second dad. He's always encouraged me, and sometimes he even nags me just a bit, but he usually does it with a sense of humor. He's always walked the walk when he told me to go to school, buckle down and finish my degree. During the time I've known him he did just that himself and is now a vice president of a large company with enormous responsibilities and the respect of his peers.

I met him when I was sixteen and dating his stepson. My mom was his stepson's English teacher. My mom and his stepson both passed away unexpectedly within three weeks of each other when I was only seventeen. My mom had been sick. His stepson had not, but both losses left me empty.

They adopted me....Pops and his every way but legally when they could have just easily and understandably turned inwardly to focus on their own grief. My father was extremely grateful for the parenting back up since he was grieving himself and feeling quite lost.
Pops and his wife wanted me to move in with their family and made sure my head was on straight when they kicked me out next year (sending me straight to the dorms and my freshman year of college at the local university.) When senior year rolled around and I was living beyond my means, I moved back in for a year. Of course then I got a job and my first apartment and moved out (but not without a little parental prodding to send me on my way and make sure I was okay.)

Pops and his wife (she's my second mom, but today is about Pops, although I'll definitely tell her story one day) have always been there for the heartaches and the triumphs. When my grandparents died, when my father died.... they were there.... When I was crowned Miss Deaf Tennessee they were cheering loudly, and I'm pretty sure they had their hands in the air along with the rest of the crowd. Graduation day? Their relief and pride were beyond words.

I eventually moved to Texas to "see the world". I became quite independent. A few years later when I told them I was getting married, Pops first question...."Who's giving you away?" They gave me the wedding of my dreams, and Pops did just what he wanted to do for years and years... He gave me away. Of course I've always found my way back home to Pop's house over the years. Now I just take a husband, a stepdaughter, and son with me. The kids call him Poppy, and they adore him too.

Happy Father's Day, Pops!
I love you!

Thursday, June 18, 2009

Tennessee-Going Home

My cousin, Abby, got married at Laurelwood on Signal Mountain in Tennessee last Saturday. We parked at a location on top of the mountain and took school buses to the wedding location passing farms, mountain scenery, horses and cows, and just the most beautiful natural Tennessee country God has created on the drive there.

The wedding was held outdoors overlooking a lake and surrounded by trees, and my brother's family was already sitting in the last row waiting for us. My uncle, aunt, and I joined them. I had no idea why Dean, who is totally in denial about how much hearing he is losing from his Air Force days at the shooting range, did not elect to sit a little closer to the front.

The wedding began and I was completely prepared to be lost throughout the ceremony. I have to say I was stunned to understand nearly every single word of the ceremony from where I sat. Seriously. To be fair, I slid the magnet off my head to do the hearing aid alone comparison and found that the acoustics were so excellent that I could have understood a lot of it with some intense concentration from where I sat without using my cochlear implant, but I would have been mentally drained. However, once I slid the magnet back on I didn't struggle. It helped to see the faces of the speakers even though I was quite a distance from them. It helped to see the rate at which they moved their mouths and the expressions on their faces even though I couldn't read their lips. I actually prefer the term "speech reading" to "lip reading" because comprehension has much more to with the whole face than just the lips. I don't even like talking to someone with sunglasses on for that reason. Odd, I know. :)

At the end of the ceremony there was a prayer. I always look at the speaker during prayer, even though I can usually see what's going on around the speaker as well. What usually amuses me is seeing which hearing people are peeping around during prayer because they just can't be still long enough to close their eyes and bow their heads, and of course then they see the deaf person and instantly have the oops...busted "deer in headlights" expression. No judgement from me because God knows I've no room to talk.... just amusement, I promise. So anyway, I closed my eyes since I couldn't even see who was praying, and I darned near fell out of my chair. I easily understood every word of the prayer, except for the first names of the groom's parents who were mentioned. Amazing. I would love to have that sound system with me everywhere I go, and I'd be set for life.

After the ceremony my family and I grabbed a round table outside, and my uncle told stories of days gone by. I was so grateful that I could understand what he was saying because, first of all, he told me I was a really good kid, and that my brother was the punk I remember him to be. My mother, who passed away when I was seventeen, had left a journal stating what a joy my older brother was, and Uncle Moe clarified that Dean had her snowed. Mom also frequently mentioned how intense life was with a hearing impaired child with a flair for drama, so it was nice to hear Dean called on some of his shenanigans since I wasn't as clever as he was at looking angelic. I also very much enjoyed hearing Dean call Uncle Moe's son, Jeff, after this conversation and leave a message apologizing for bullying him as a child. Did I mention my brother is a youth minister now, and I've always been considered the wild child of our family?

Uncle Moe also told some stories about his life growing up and running a bait shop with Papaw. We also discussed some tragedy our grandmother experienced as a young child. I'm glad I didn't miss out on our conversation that afternoon. We've lost too much and too many in our family, and I treasure moments like those because they don't come often.

My friend, Dani, was supposed to come visit from Atlanta the next day, but due to a flare-up with lupus, she couldn't make the drive. She is the most amazing person and appreciates the beauty of every single day, as only someone who has nearly not made it to see another day, can. Not only does she have lupus, but she barely survived heart failure immediately after delivering her son, Ronnie, five years ago.

Dani and I lived in the same dorm during our freshman year of college, and our lives went separate ways for a while and then brought us back together again. We had to settle for a phone conversation on Sunday afternoon, but I didn't have my video phone, so I didn't think I'd be able to talk to her long. We talked and we talked and we talked. I couldn't believe it. My brain was definitely processing my new mapping. I had to concentrate and felt a little frustrated at times, but my confidence had definitely increased by the time we hung up. Dani seemed impressed I'd hung in there as long as I did, but she was worth it!

I had several more phone calls while I was there with other friends and family members and did quite well considering. At one point, my friend, Crissie, called me on her video phone with an interpreter for herself, while I understood everything she said. She's not hard to understand though, as she speaks slowly and clearly with a definite southern accent. I think if I understood no one else on the phone, I'd probably understand Crissie, but I don't think the irony of the moment was lost on either of us.

Crissie is actually mulling over the idea of a cochlear implant herself one day. Having video phones has given her a unique look into my life in the last few months. She saw me five minutes after I walked in the door from my cochlear implant surgery, groggy and wrapped in a Princess Leia styled bandage. She talked to me when I had all those crazy bells and sirens going off in my head and thought I was losing my sanity during the first week or so. She saw me holding my head in pain, frustrated and depressed, hoping I'd done the right thing. She's been on the phone with me when I've paused to listen for Aidan in the next room to see whether he was sleeping or awake. I've also been able to report to her what's been going on across the house with Aidan and his dad while I was talking to her on the phone, so she's been a spectator of sorts on my journey and isn't deluded about being an insta-Jaime Sommers (a.k.a. the bionic woman from the 70's with super hearing for you kids out there going "huh?")

Another "break-through" on my trip was a lot more mind-boggling. The family television was turned on one night for the first time since I'd arrived. No one was watching though, and the captions hadn't been turned on. Family Guy was on, and I've never watched the show. On a whim, I decided to sit in front of the TV and see if I could get anything out of it. For about ten minutes I sat there, maybe three or four feet away, staring intently and concentrating and.... understanding.... color me dumbfounded. The show was beyond stupid. Really stupid. So stupid it was almost funny, but I won't give it that much credit. If I closed my eyes, it became gibberish again. When I opened my eyes I could follow by watching the pattern of speech as the characters' mouths opened and closed. I think it was also a matter of not having enough confidence to close my eyes and focus. After a few minutes, I was tired. It didn't come easily, but I understood nearly everything being said. Wow.

The last little success of my trip that stands out to me is when I arrived back home at the airport in Houston. I was supposed to meet my husband outside the baggage area, but before I took the escalator down I heard him calling my name clearly. I knew he was far away, but I knew it was James, and I knew it was my name! I couldn't locate him though. I turned around, and finally saw James holding Aidan waving at me all the way across the escalator! It was so good to see my guys and so great to be home.

So, where does the credit go for my latest successes? Is it all the cochlear implant? Of course not. It is one amazing tool though. I credit the amount of time I've spent wearing it, even when my head hurt, and it sounded horrible. I would wear it for hours and hours and work my way through those rough first weeks. That wasn't the cochlear implant. That was me. I also worked my way through the mappings my audiologist gave me as quickly as I could, even though it was almost overload on my brain at times processing so much data. As soon as I could, I'd schedule another appointment for another mapping and get more ambitious mappings and continue working my way through them as quickly as possible. This was my way, and that's how I did it and continue to do it. Everyone that gets a cochlear implant has to do this in their own time and their own way.

There are questions on these blogs as to whether the CIs and mappings deserve all the credit for successes. Umm.. no. Heck, no. Some people want to know more about the deaf person's real experience with the implant. I'm trying to be real. It's hard, but it's extremely rewarding. It's so much work, but there was a point I reached about a month into wearing the implant where it became very tolerable. I don't like to complain about it because I waited so long to get this, and I want to appreciate the gift of having it. At the same time I don't want to be a fraudulent ad for cochlear implants and make someone think that it was a matter of a little surgery and slapping on a magnet and processor and "ta-da"!

I'm still out of my comfort zone on the phone, but my audiologist wants me to try to use it more often for the auditory practice. I would use an interpreter on the phone for anything important. I still can't tell you what someone is singing in a song unless I know the song already. I still get occasional static when my brain hasn't processed some mechanical, electrical sounds. Most of the time I get nice quality sound with my implant, but other times it's like being tuned into an AM station, and it's not as pretty, but it usually works itself out in time. When we rent a movie, the subtitles for the deaf and hard of hearing are on, or we are are starting the movie over (and *sigh* it seems like we start over a lot since *I* don't usually hold the remote! :-) ....and every night, I still take it all out and sleep like a baby.

Monday, June 15, 2009

Mapping #6,

Last Wednesday I had my sixth mapping. I spent two hours with my audiologist, and I realized something that truly makes a great audiologist is one who can also play the role of therapist once in a while as well. Not many audiologists seem to spend as much time paying attention to the client's psyche as much as the numbers and data and gadgetry and knick knacks.

My afternoon with Michelle reminded me of a lesson that my state director for the Miss Deaf Tennessee Pageant, Marty Dunnagan, taught me years ago: "The only person you are competing with is yourself." She drilled that in my head that it was all about me doing my personal best and not sitting around getting eaten up by what talents or skills someone else might possess.

Having a new cochlear implant is life changing and stressful, although it's a good kind of stress. It still involves dealing with personal expectations, excitement, disappointment, frustration, and anxiety. I can read other experiences and blogs until the cows come home, but Michelle is concerned I'm going to (or *ahem* already have) become impatient with myself when I, unwittingly, compare myself to others and their experiences.

Usually I find other blogs EXTREMELY inspiring and enlightening on the real experience as opposed to the advertised experience of being a cochlear implant user, but once in a while there might be something said on another blog post that makes me second guess myself or feel like I'm not up to par with where I should be. Usually though, I feel a kindred of spirit with a small group of people that are right now going through this journey as newbies too, and I look to the more experienced posters for encouragement and an idea of what to expect down the road. However, if I find that one thing that makes me doubt myself, it might take me some time to find perspective, and that's when I'll ask Michelle questions..."well, what about this... or what about that??? Was this the right choice? Should I be able to do this?" I'm not bad about bothering her (I don't think anyway), but I do think she is just insightful and pays close attention to what her clients are thinking and saying.

Michelle likes to remind me of what I've accomplished in a short time, what I've had to overcome, what limitations I might have started with that someone else might not have had, and she also reminds me how much I want this to work. Above everything else, she truly believes it's the time, training, and desire to do well that makes successful CI users. She explained why brand name is a factor but in the end, if someone is going to succeed with Nucleus Freedom, they probably would succeed with the Med-el or Advanced Bionics. Likewise, if someone wasn't successful with one, they probably wouldn't have been successful with any. Food for thought. At least I'd never thought of it that way.

I guess a good analogy for Michelle's theory would be that it's like driving a car. Hondas and Toyotas are great, but there's a difference between a 16 year old driver and a 30 year old driver (or should be!) It doesn't matter which one either drives which brand. The 30 year old will most likely adapt most easily due to previous experience driving, while the 16 year old will not have the years of experience of driving in either brand and will have to gain experience one day at a time. The 16 year old shouldn't feel compelled to be as talented a driver as a more experienced one. No type of car is going to put that 16 year old on the same playing field as the 30 year old.

I love my audiologist. She spends more time pepping and educating me than she does testing in booths or plotting points on paper, but her positivity and practical advice is what I take with me and use to keep my goals realistic (or to celebrate when the phenomenal happens!) She also takes her time with the mappings and never rushes. It's great because I will leave there wondering if it's tweaked just right, and then bam, the little things just start rolling and I have to take notes (or blog) to keep up with what happens every time I get a new tune-up after visiting her. I also like to email her little things here and there like "I heard crickets last night!!!" I know she can appreciate it more than anyone.

Even though I left there feeling like I didn't have much more oomph to my CI this time, she did a HINT sentence test just before I left and I scored 79%! I was very nervous for some reason, my own personal expectations, I think. This was just wearing the CI and no hearing aid sitting in a sound proof booth listening to the recorded sentences from the speakers. Before I had the CI surgery, I had scored 43% on the same test. She also re-tested my hearing and it was similar to my first test after activation. All frequencies between 250-6000 were either 20 or 25 dB. Last time there was actually a 15dB in the higher frequencies, but she accuses me of being "trigger happy" (can I help it if my ears ring after one pitch???) and says the most recent test is going to be more accurate. I'm still dumbfounded that it is MY test that has that line right going across the top of the paper instead of curving off the right side of the paper into a dead man's ski drop and fading off into oblivion to never be seen again. Amazing.

Like I said, I didn't feel much power or oomph... mostly it seemed the same but with slightly more static (of sounds I guess I need to process?) However, I've been hearing some really cool stuff in the last few days (plus Michelle also says that's just a life time hearing aid user thing wanting to max out the volume on their new CIs while later deafened people tend to go much easier on that... interesting, yes?) That same night, I heard my VRS (video phone) ringing when my friend, Crissie, called. I've never heard that. I was looking at the ceiling trying to figure out what the ringing sound was when I realized that...holy bat signal was going off in the computer room.

The next day, I noticed that in EVERY room of the house I could hear the birds singing loudly. all. day. long. At one point, I was about to fling open the door (at least in my head) and scream "don't you chicks have some worms to dig???" I had to grin knowing that I was kinda, sorta whining to myself about hearing birds take over the house. I wasn't really that annoyed, but I was amused and in awe of this new mapping that seemed so subtle yet was still hitting like a ton of bricks... this sucker had some serious power.

I left my son and husband at the airport to fly to a wedding in Tennessee on Friday afternoon, two days after my mapping. On the plane I thought I'd relax a bit being child-free (and missing him already) and very tired. However five year old, Giovanni, sitting in front of me begged to differ and talked to me the entire flight peeking over his armrest back at me about his summer plans (five weeks in Chicago) and his Gravedigger monster truck (Aidan has the same one, but Giovanni has FOUR trucks!) he was playing with on armrest or passing back to me to "play" with too and all about the monster truck show we both had the uh... joy?... of attending a few months ago in Houston. :-P He offered me candy and wasn't going to take no for an answer. We looked out our windows at the clouds, and when we landed he pointed out the tractors and trucks on the runway. Of course his dad slept through all of this. My seatmate was of no help either. Since I was already missing my son I was a sucker for this thoroughly exhausting conversation anyway.

Just before we landed this child had tapped me for the umpteenth time. I looked up.... "yes????" Giovanni (who also goes by G-man) says most precociously, "I'm not allowed to talk to strangers." Say what, buddy? Oh no you didn't.... Me *shaking head* and maybe ever so slightly impatient after over 2 hours of ongoing conversation with the little guy.... "well, why are you talking to me?" G-man replies, "you aren't a stranger." *SHAKING HEAD AGAIN* " don't know me!" G-man says??? (do I even need to say it?) "Yes, I do!!!"

Who can argue with the wisdom of a five year old missing most of his top front teeth? Certainly not the lady blessed enough to understand almost every word he spoke even though he was half hidden by his seat in front of her on a very loud airplane ride from Houston to Chicago. I hope the little G-man is having a fabulous summer vacation!

Monday, June 8, 2009

Technology (Phone, Text, Music) Suggestions Needed! :-)

This one is for the implanted or aided techies slash just knowledge modern people of the world out there using a reasonably amplified, clear cell phone with great texting options. What works? Pros? Cons? Anything to avoid? Anything you can't live without?

I need a cell phone that's easy to text with (QWERTY keyboard even??) because I will probably use it for the texting feature more than the phone. The phone needs to be extremely compatible and clear with my CI. Anything that doesn't cost an arm and leg would especially win over my husband of course. :)

I like the idea of the Blackberry, but I don't think it's compatible for phone use for anyone with a hearing loss? Please correct me if I'm wrong.

Also... for those of you listening to music and books on tape, are you using an Ipod? I've never had any use for one, so I'm especially clueless when it comes to current technology and music on the go. My gym has televisions with captions and allows tuning into shows by radio... so the guy at the gym recommended an Ipod and buying the extra piece for FM radio. Anyone done this or have another idea.

Teach me please! I'm all eyes! 8-)


Friday, June 5, 2009

The Good, The Bad, and The Ugly

Another blogger, Sara, who was also recently implanted mentioned that we very rarely hear/read the not so pretty side of life with a cochlear implant. She asked for honesty in what has been difficult with the cochlear implant experience since many people mostly just blog about the "kittens and rainbows" version and not the nitty gritty details. She didn't get too many overly negative replies, but that's not to say there isn't a downside to this experience on occasion. She comes across as an analytical person who likes to get all of her facts, so after some thought I decided to take a shot at the good, the bad, and the ugly.

THE GOOD (as in the very latest)... Well, tonight I heard crickets outside, at least until the air conditioning unit drowned them out. They were really loud. My husband said they were very high pitched, so I came in and looked it up. According to one site the cricket sound is around the 6000 Hz range. I'm pretty sure I've never heard crickets in my life. That was really cool. I mean seriously... a cricket??? (I remember my brother making jokes about a cricket they were listening to one evening when we were spending the night with our cousins at our grandparents' house. I remember thinking... "Cricket... what cricket??? There's a cricket here???" and I'm so much more deaf now than I was then.)

I'm also understanding my son more easily each day and the little quirks in his voice, but he only speaks one or two words at a time. Check back in six months to see how good this skill really is!

Using the phone is awesome, but after my last post about chatting away with my husband on the phone, I was unable to follow a conversation with him today for long. Oh well, you win a few; you lose a few. I'm glad that I have access to an interpreter at any time for phone calls at home. If I can make a successful call on my own, that's just bonus. If it's an off day, I don't miss a beat.

Birds singing.... I still can't hear them enough. Hearing my son and the birds.... if I heard nothing else, I would do this all over again.

Dinner with the in-laws last night.... Father-in-law with over-sized mustache and Texan drawl?... picked out a few random sentences throughout the evening?....check (and I'm almost always lost trying to understand anything he says if it isn't short and sweet.) Chatty brother-in-law who talks at the speed of lightening?....I picked out a few sentences with him here and there too.... got a little dizzy trying to keep up (or I just have a short hearing attention span?) Conversation in general at dinner table?? It took some concentrating, but there was a tremendous difference between what I could understand last night compared to the last time we had a family dinner. Usually I'm pretty quiet and will talk to only those right beside me, but last night I held my own with anyone I talked to when I focused. It doesn't come naturally, but the fact I'm even getting any of this information in that noisy environment is huge.

THE BAD.... Sometimes hearing every little last thing is a recipe for anxiety. Sometimes strange unlocated sounds may come across as annoying buzzing static. Sometimes I think everything is magnified tenfold, and I find myself shushing my husband for practically breathing out loud when my son goes to bed for fear he will wake up.

Really petty? I hate trying to put my sunglasses on my head. It's my little fashion statement to wear my super big glasses on top, but it knocks my magnet off, so I end up adjusting them at an odd angle. It's not just a fashion statement... it's also a bad hair day cover-up to throw glasses on top and pull the rest of it back in a ponytail. *sigh*

AND THE UGLY.... I'm *thisclose* to going kung-fu on some grown man in my neighborhood that insists on riding his motorcycle by our house vroom vrooming by as loudly as possible at ALL hours of the day... baby's nap time...check.... dinner time....check..... after dark....check..... midnight... of course...check check. I can not describe this accurately enough. My heart literally stops when I hear this motorcycle. The sound terrifies me, and it's like he's going to drive right through my window. Our house is at a four way stop, and when he slams on the brakes and then gasses up full power my heart darn near leaps out of my chest pounding. Got Xanax?

I honestly have so much respect for hearing people who HAVE to hear 24/7 now. Even when it is quiet, there is still sound. Aidan and I have the book Goodnight Moon on loan from the library, and the last line amuses me. It says "Good night noises everywhere." God bless the poor hearing people. :-D Is it any wonder the white noise CDs and machines along with all the mediation music and nature sound CDs make a gazillion dollars? I only wish I could bottle up the sound of silence because I could sell it off by truck loads to the weary non-sleeping masses. I'd call it "Back to the Womb" or "Go to your Womb!"

Good night everyone! I'm signing off and tuning out. Ahhh.

Tuesday, June 2, 2009

It's the Little Things

So, my husband just called. The phone stopped ringing before I could find where I left it last, but I quickly switched my BTE (to any newbies... that's short for "behind the ear") over to the t-mode to talk on the phone and punched in his number. I knew if it was really important he'd tell me immediately to call him back through VRS (my video phone) so that an interpreter would make sure I didn't miss anything.

James had a few things to tell me about... He talked to an old friend. Another friend's pet died. He was going to pick up Turbo Tax. He was at Home Depot returning things, but he also bought a few items. He might go do this errand. He'd be home soon. Tomorrow he planned to clean out the garage... and on it went. So the conversation wasn't necessarily the most exciting, but it was not limited to short sentences and ended under 60 seconds.

My reaction to all of this??? I had just put Aidan down for his afternoon nap. I was a little tired after my little wild child had kept me on my toes getting into everything all afternoon, and we had just read several books before nap time, so I just plopped down in a chair outside to kick back for a few. I wasn't trying extra hard to concentrate or squinting at the phone (because as I told a friend, squinting at phone somehow improves my comprehension.) I got off the phone and realized what just happened. Wow. A real married conversation. I just love this little bionic ear.

One more note for the day, I'm also thrilled that my little man, as wild as he can be, is learning to show his gratitude. He has one of those wooden box toys that can be found in many doctors' offices with the bead mazes and puzzles. There's three puzzles on one side that can be made by flipping the wood pieces, and he got his wrist jammed between the frame and a puzzle piece. The poor child was screaming like a banshee from his bedroom. Fortunately his dad heard him, as I didn't, and James was able to finally free his wrist by putting lotion on his swollen hand. With tears pouring down his face he looked at his daddy and said "thank you!" James caught his breath, and I heard him say, "you're welcome" while watching his son scamper off, and then he looked at me and said in awe, "he thanked me." I love that kid!