In answer to all your caring inquiries:
Yesterday, March 24th, I met with Mary Lynn McDonald of the Houston Ear Research Foundation for my 4th Cochlear Implant programming session.
She’s a WIZARD, that patient kind of maestro who can orchestrate the multiple layers and facets of a programing session from the technical side of the puzzle (with all it’s graphs, bars, meters and drop-down windows – seemingly-endless options) to the handling of the wee human-being sitting there trying to understand what in goodness name is happening to them now as her computer interacts with the marvelous chip that’s embedded in their now-bionic head!
First thing we did was experiment with #5 and #6 magnets in my coil – stronger magnets to hold the coil onto the outside of my head through 2 thin layers of cotton, so I can keep my head covered with a thin scarf (in lieu of my turban). I left with a #4 and a #6 for now – thank you try much!
We played around with the beep-beep (baby soft) – Beep Beep (little louder) –BEEP! BEEP‘s! (too LOUD!) for a while and then she made some fine-tuning adjustments according to how many times and how high I jumped off the chair during the test.
Can you imagine being aware of each tick of a clock, and then all the clocks tocking in your brain as you move about your house? Well, I’ve been hanging out with those noises and my computer keys hitting upside my head to beat the band – TMI. HELP-too much information!!
So, Mary Lynn dropped the bar down 3 notches across the top of the whole threshold in an effort to quiet things down – praise be to the stifler of impending doom. (Are you laughing with me? – it’s funny but after a while, it’s maddening if you’re the one it’s happening to.)
Don’t get me wrong, I can control my Volume and Sensitivity (how wide apart the miss are) levels but we are training my brain and waking up nerves that have been sleeping for 17 years – so, I have homework from Mary Lynn to aim for certain levels in those meters.
And now, today, my brain is trying to get used to all the changes, the most important part of the process – UPTAKE.
CI Surgery was Jan 9th, 2 months ago, and the tip of my tongue is still numb and the gums on the side of my mouth where the surgery happened (in the area of the facial nerve), are still very numb. Brushing my teeth is a trip! but this is all par for the course, nothing out of the norm.
If I move the foods I eat to the other side of my mouth, I have some taste over there (yeah, it’s coming back!) but the textures of foods are altered and unpleasant – lettuce feels like a bar of soap.
Am I the only one who took their taste buds for granted?
Now, I can feel the bottom half of my ear but the top half is still so numb that I can’t feel the processor hanging on it.
The long wound behind my ear is mostly healed and only gets tender when my scarf presses on it for a while. And now I can palpate the area where the CI is underneath the skin on the side of my head; it feels like there’s a cell phone buried underneath there, one of those older, thin kind of pop-open phones (yes, it’s thick! because there’s a whole computer in there! And yes, I am one of the people who CAN put that side of my head down on a pillow and sleep.
As soon as I get home, my scarf comes off; I wear my hair in a braid in the day and loose at nite (aaah!). This is the opposite for what I’m used to – for decades, I’ve worn my hair up in the day with my turban wrapped and pressurizing my head (a feeling I love and count on for keeping focused in the day), and down and braided at nite for r&r.
I didn’t get to see my dear surgeon, Dr. McReynolds, this time but Mary Lynn faxed the list of my physical report to him.
She also taught me how to use my T-Switch which allows the CI to interact with MP3’s, conduction loops and the phone. I’ll have to practice that one of these days so I’m ready for the upcoming National Hearing Loss Assn Convention in Austin this summer.
I just found out I received a full scholarship to the convention – woo hoo! Thank you everybody in my Houston HLA support group family for nominating and supporting me to receive that gift – what an opportunity!
I also have the honor of teaching a Chair Yoga Class each day of that 3-day event, and I get to go to all the workshops and learn all about my new Cochlear world – how exciting!
I have the latest model of Nuclear 6 CI so I have lots and lots of freedom to choose all kinds of hearing environment mixes – like listen to a speaker at a meeting AND hearing what people in the audience are saying at the same time (imagine that!).
Mary Lynn said that some day the voices I’m hearing will sound normal, instead of like Donald Duck – that will be a welcome change!
With the CI alone (I practice about an hour a day), I struggle hard, doing my ‘listening therapy’- this is part of the process.
With the CI and my hearing aid, I am still at the point where I miss my old arrangement of having 2 hearing aids. But, things are coming along well and I’m celebrating that I went through that major surgery without a crisis.
I am still highly dependent on my long-time friend, my Comtek PA system and right now I’m getting it all packed up (spare parts and batteries galore) for my bi-annual women’s yoga weekend coming up this Friday in Galveston.
I’m having to practice relaxing my expectations of my body to be stronger by now. The healing process still has me sleeping 8-10 hour nights when my schedule allows and I gained weight since the surgery, so I’m anxious to get back into my exercise program – no worries, I’m not forcing it. Yes, I missed a lot of work days but, that’s turning around.
My next programming session is on my 62nd birthday which is 7 weeks from now.
Ya know, people everywhere are really excited and truly interested in this CI thing! My produce guy at Whole Foods has me report to him each time he catches me in the store, and people from all over are asking me a million questions about it.
Whoever/Whomever invented and developed this CI technology, my turban is off to them (no pun intended; it really is!) – thanks for the ride of my life and for throwing me into this brave new world full of potential for my hearing ease and enjoyment.
…you watch, in no time, I’ll be reporting to you that I’m understanding what I’m hearing, and it’s pleasant and coming in nice and easy. I am projecting strongly that this be the case on all counts.
Thanks again to the people of the USA who pay their taxes and gave me the opportunity to open this door and to Mark and Melba who, long ago gave me my first and still fav book on CI called, REBUILT – How Becoming Part Computer Made Me More Human by Michael Chorost.
PS – forever thanks to my husband who continues to be patient with the process. We end up laughing so hard for the bloopers that pop up in the space of our trying to communicate, so all is well in our crazy-but-cozy Khalsa household.
PS, PS – so far, my fav CI ‘Candid Camera’ moment is the day I got into a real crowded elevator and had to stand in the middle, facing the doors. Something felt strange in there and I turned around, and no less than 5 people on the right side of the elevator had their necks stuck out, straining to figure out what the heck I was wearing on the right side of my head. I caught them all gawking and no time to explain cuz the doors opened and the moment was gone – I’m still LOLing about that – what a precious, human moment!!!
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