Tuesday, December 17, 2013

Activation Day

Today turned out to be beyond anything I could have imagined. A table piled deep of paraphanalia that had fit into a huge premium backpack was my first vision that said this is going to be a huge endeavor. Audiologist Sara and her intern Carley were happy to see us. I asked Wayne to come along to be a part of this new event in our lives. For someone who was a great sport amateur photographer in his early years, I'm sorry that he really didn't capture the really exciting moment of me "going on air." But maybe he was just a little overwhelmed himself. Together we are not the epitome of huge expression, but we get lost up in the moment.
     The angels from above didn't break into Handel's Hallaluia chorus, but it was a sweet moment of hearing a slight siren sound and then Sara's voice albeit a little high pitched and mechanical asking me "what can you hear?"  It was not a series of beeps that I heard, but actual words. I had to close my eyes to make sure I wasn't depending on my lip reading. That's when I knew all the indecisiveness, the waiting, the rejections, the final approval, and surgery were all worth it. The best I could show was a little misty eyes and on to the business at hand.

 We spent the better part of two hours finding the right loudness for each group of electrodes, figuring out all that equipment that was on the table and creating baby step programs to get me through the new two weeks before I see her again.
     All the while I am trying to become accustom to my voice interrupting the voices in the room. Quite a lesson in rude butting in I must have developed over the years. Wayne's voice being lower/deeper than the the electrodes' capabilities are being picked up by my other ear's hearing aid. Another perfect marriage is in the works.
     There's a funny bubbling aquarium sound that has actually dissipated over the past few hours since reaching home. We're were immediately met with some unexpected out of town guests and I can actually hear them visiting in the basement while I am fixing dinner. Yes, I'm typing this as dinner is cooking.
      Now that dinner is over and I have had the opportunity to have spent some time listening to voices, cleaning up clattering dishes, and trying s little TV, I can't help but feel that it will take me less than the anticipated months for this to become as close to natural hearing as possible. Are there some down sides? You bet, and I will share those a little later, just to let you know how realistic this adventure is, but for now I will bask in the phenomenal miracle of technology, a skilled surgeon and audiologist, and the countless thoughts and prayers of family and friends who have made this possible.  It's a blessed day!

Now you see it.
Now you don't.

Monday, December 16, 2013

Post Surgery Update

Minutes before my CI surgery
At Home with my new Turban

My excellent doctor's hand work
      I want to share these pictures to show some of the behind the scenes experiences of what happens right after surgery. Sadly I don't have pictures of all the adventures that have happened in the past three weeks, but the fuzzy brain just didn't think fast enough to put a camera in someone's hand. For the most part it has been a quiet time to just let my body heal. I was in the hospital at 8 a.m. and home by 4 p.m. that afternoon.  I was treated professionally, kindly, expertly at St Joseph's Hospital in Denver. I could not have asked for better care. The surgery lasted a little over three hours, and all I can remember is complete euphoria, good will, and gratitude for getting this far. Drugs may have helped kick in those emotions, but I really haven't lost that feeling yet. 

      My surgery was the Monday before Thanksgiving and by Wednesday, with the help of my own Vietnam Vet husband, we made a QOV presentation to Joe Birge. My participation in this Foundation is very important to me, and I didn't want to miss out on this opportunity. This was not a quilt that I made, but from someone else who participates in this great organization.  It was a special honor to just be the presenter this time.

Two days after surgery.
 Well enough to make a QOV Presentation
Pat from Wisconsin's beautiful quilt presented to
Vietnam Vet Joe Birge
      By Thanksgiving Day, I thought I was on a smooth ride to healing.  Actually I was not yet off the pain meds and the new BP meds that I had to start before surgery were not being too kind to each other. I passed out due to a drastic drop in blood pressure that won me an ambulance ride to the ER and a full day of trying to stabilize my blood pressure.  After years of trying to keep my BP from soaring, this was a whole new experience. Many times in these past few weeks I have had a hard time trying to tell if it was the bp meds or the surgery aftereffects that has been causing the fluctuating numbers, dizzy spells, and light headedness. The one thing I wanted to avoid was to confuse medications, but all the doctors were insistent that I start them before the surgery. Now it will be interesting to see who will blame what. Whatever the case, this is one battle I am allowing myself to retreat from. They can figure it out. I have better things to do...like learning to hear again!

    The next two weeks were pretty mild compared to that first one. I worked through the expected pain without any medication. The most worrisome that proved to be typical were these cattle-prod like shooting pains inside my ear. They tapered off within a few days, and were more comical than painful. Then a new sensation came on board that hinted of a miraculous possibility.  I started hearing that "weird water in your ear" sound. Very likely fluid does build up in the Eustachian tube after this surgery, so this is not abnormal, but the key word here is sound!!  If I am hearing this, it quite possibly means that some of my residual low frequency hearing was not lost.  This was one of the drawbacks I had struggled with in deciding to have a cochlear implant to begin with. I had to come to the realization that what little residual hearing I had would be lost due to the electrode being fed into the tiny cochlea destroying any remaining  live hair cells. As I explained in an earlier post, the amount of hearing is like a healthy foot attached to a destroyed leg...not much use. But the good news is that as technology improves, cochlear implant processors (which are electrical) are being developed to add hearing aid (acoustical) capabilities. I was fortunate enough to be implanted with the newest electrode that is designed to prevent the expected loss. So when such a hybrid is available, the little bit of saved hearing may give me an ever wider range of hearing tones. That's way down the line in the future. Right now I am just grateful that I was given the best technology out there to hear more than I ever have,

   Being completely deaf with no use of a hearing aid on one side,  I have stayed close to home, avoiding crowds more than four, and that can be a challenge during the holiday season. But to be honest, I have loved the excuse.  It has made this holiday less rushed, hassle free, and definitely less stressed. My husband has become my new best friend...again. He has definitely been my hero in this trek.  He was by my side to catch me when I passed out. He gently washed my yucky hair while I held a cup over the stitched ear a long 10 days after surgery. He arranged a mini-birthday/Christmas party (of 4!) to help get a little Christmas spirit going. And, today he finished  decorating the tree (this has ALWAYS been a solo duty for me).  My precious friend and her husband from Wyoming traveled down here to pay me a visit this week, which was more delightful than she could ever imagine. We have spent precious moments with our grand-kids making gingerbread cookies. Shopping has been online and minimal. So far this is the best December I have spent in a very long time.

I am less than 24 hours from meeting with my audiologist to have the processor fitted and activated. This is the climax of this adventure, and while the rising action has been sweet, quiet, and calm, I am full of anticipation, doubt, and yes, just a little fear mixed in there. I want to hope for a "rock star" activation, where I hear voices right way, but I know it may take longer than the immediate gratification I desire. I promise, whatever the result, you will definitely hear from me tomorrow. This is too BIG not to share!


Tuesday, December 3, 2013

Amazing Grace

Our memories are sometimes wrong or not the same as those who lived the moment with us, but the truth of those memories are more important than the facts. I hold a special memory of my mother teaching me to draw.
What I remember: her studio, an apple, cigar box of colors, the picture window, talking to me, Rich playing war in the sandbox, favorite position for drawing, watching TV, etc.

What I don’t remember:  her voice,  my brother’s picture (but I do remember his accurate drawings), when this happened, if it actually did;  more like a montage of several events... again,  the truth is more important than the facts.

“Mommm, I can’t!! “

Belting out my usual chant of low self-esteem, I dolefully peered into my mother’s utility room that doubled as her art studio.  It was just a tiny room with barely enough space for the washer and dryer and her art easel, but it was a place of magic that transformed blank canvases into portraits of beautiful people who graced our lives. 

I was in my favorite position on my belly, scrawny legs sprawled behind me, feet crossed at the ankles, propped up on my elbows. With the Rand McNally Road Atlas in front of me as my easel pad, and a piece of paper I was attempting to draw an apple my mother had placed in front of me. The autumn morning sun beaming through the large picture window blanketed me and my tiny makeshift studio in the doorway of her art magic.  My cartoonish flat (one dimensional ) round red apple glaring at me while my older brother’s masterpiece abandoned for a sandbox game of plastic green soldier war in the backyard, laughed at me with its authentic outline of a perfect Red Delicious.

 “How does he do that? It looks so real and mine doesn’t!”

Well, first of all, he’s a little older and has been practicing it a little longer. You’ll be able to do that well in a couple of years, too.”

“But I want to do it NOW!”  I bellowed as I flicked the red crayon through the threshold of her studio. With her perfect parent patience, an inherited trait that I completely missed at the gene pool, she reached for the offending crayon that just missed her ankle and walked over to kneel beside me.  She reached for a new sheet of paper and placed it in front of me.

Leaning over like she was about to go into a yoga partial child pose, her gentle voice gracing the top of my ear she said, “Honey, it’s all a matter of just seeing. Let’s just look at it for a moment. Is the shape of the apple really round? “

The apple silently stood at attention as I studied it. Its shape was not round at all but a little long and a bit triangular with bumps at the bottom and a widow’s peak curve at the top where the stem sat. “No, not really.”

“Okay then, use a pencil here and see if you can outline its shape. Look, even one of the bumps is a little bigger than the other ones. “ 

I drew the three bumps at the bottom and began to draw the sides of the apple digging the pencil hard against the paper.  She patted my hand, “Relax, sweetie, hold the pencil a little lighter and your lines will be softer.”  My hand released the death grip on the pencil and I looked up. She took my hand and massaged it just long enough to make me notice how tense I was. She took my pencil and in feather like strokes she guided the lead on the paper to create the right side of the apple, then handed the pencil back to me.  I mimicked her movements and created the left side not totally unlike hers. Wow that was cool. Then I looked at the apple again and proceeded to finish the outline on top.  A tiny glow of confidence was beginning to take root. I beamed up a grin at my mother.

“That’s just perfect, Suzy. Now look at the apple’s color. Is it all a solid red? “As if suddenly changing  its skin, the apple gleamed with gradations of red gold to deep scarlet, with tiny specks of black and brown.  A gleaming crescent of silver like my mother’s coat pin of glass diamonds shone on the side where the sun was touching it.” Mom, this is going to take more than this one color isn’t it? “ 

“Well you have a whole cigar box of colors beside you. What colors can you use?” I reached into the sea of colors making noisy waves through the pool snatching up Burnt Orange, Bittersweet, Maroon, Goldenrod, Sienna, and Silver. Lining up the soldiers of color, I began to doubt how I was going to use them all. Sensing my hesitation, Mom said, “Use your first red and color lightly all over inside the lines. Then take the other colors one at a time and look back at the apple to find that color on its skin.  Create that same place on your apple. “

  I creased my brow in concentration and started the wash of red over the surface, barely noticing mother’s silent retreat from my side.  As each color had its turn claiming its place on the canvas, my apple became something much more than the red apple I first drew. The blended colors became one and I could see a new apple. 

     I really don’t remember what that newly drawn apple looked like, but the lessons have remained, and I’m not only talking about drawing techniques. No thing or no one is just one-dimensional.  Her amazing grace taught me to sit back, relax a little, be patient, study my subject silently before beginning to take on any task or try to create any solution.   Where I was blind before, she had taught me to see.