These days

I want to say all is well. I want my readers to have a positive experience. I want them to read something hopeful… I want you to not worry about me; and you don’t have to. My hope is not so tangible these days. Still there is grace. There is a sunny day. There is joy in a smile from a child. There is affirmation from a colleague. There is evidence that people believe in me, and I cannot tell you what that means to me.

Most of my life I’ve been believed in, the example, the success story. But the belief people have given me in recent years has not been for the battle I’ve fought, but for the humanity I bear. So I am torn. I want the positive comments in my blog: the “way to go”, the “we’re so proud of you”, “you’re so positive”, and now I find myself not only without sound, but without speech. In the last week I’ve had to trade words for a struggling spirit. Again, you do not need to worry about me, and I have been so grateful for the encouragement and care that is so genuine and wishing for my best. But I have to ask myself, do I have writer’s blog because I’m afraid to tell you how I really feel. Even now there is solace in putting this to pen, and somehow I am assured in my spirit that you will still be there for me, and even understand, and maybe be even more closer to my reality. And so, what is my reality?! This is the question that arises from deep within me tonight. Already just giving voice to this releases my spirit and reunites me with every one of you who I know walk with me through this ordeal. What I’m really trying to do here is give myself a permissive space, to give my humanity room to breathe a more sombre air. This has been a bittersweet time for me; I struggle with keeping positive, but also, being honest with myself. With the triumphant spirit that surrounds us, I’m even afraid to take the risk of penning these thoughts and making them public.

I’m not sure if I’m angry. I’m not sure if I’m disappointed. I’m not sure if I want to be alone, or to have company. Last week I made an attempt to be with the ladies for a night out but how quickly my excitement turned into a reminder what I cannot enjoy - company! I want it so bad but I’m afraid of it. I want so bad to have the right words, but am afraid I will disappoint my readers. I guess I just need this time to grieve.

There is nonetheless much reason to take heart. Through this journey of excitement and defeat, I have learned much more about the gift of our humanity. Doctors and scientists have become my friends, allies in the common human struggle. Boundaries between high respected positions and ordinary everyday people have been transgressed because of my very struggle. The irony is intoxicating. Bosses and employees have united over the care of my situation. Colleagues, family and friends have passed over encouragement in the form of music, little notes, affirming emails and gestures of genuine care. Everyone has come a little closer to my world, so why do I feel so far away? This is the question I cannot answer. Its mystery is yet to be unraveled. Just maybe I want to reach out to the closeness that’s there, but I can’t, or I’m afraid. Still questions linger. I am grateful for the mysterious beauty that this bittersweet experience has brought me.

Here is some retrospect of a trying week, but who wants to read about “struggle” in a blog? That is why I have been absent! If I couldn’t participate meaningfully in enjoying the Superbowl, or the Grammy’s, with family and friends then how could I participate honestly in my blog? Originally I was eager to try my processor for the big game because it performs best where there is lots of noise. But as I was attentive to the half-time shows by Stevie Wonder and the Rolling Stones, I felt how disconnected I was. This was also true with the Grammy’s. Another bittersweet moment. Big fan of music, big realization of what I can’t enjoy. And these days, the list of things seems to go on. Even the blog itself carries a bittersweet element. I have felt closer, nearer, more intimate with family, friends and the human race at large, but that only makes me want to enter it/you all so much deeper, when momentary unexpected daily reminders say “even louder” that I cannot! Maybe it’s the expectation that the CI created, that I let myself too earnestly believe. Maybe it’s living with one measly hearing aid, or that my other ear “now” remains shot. Maybe it’s all the equipment I have to mess with, the batteries, the feedback, and the obsession to read everyone’s lips. I am weary of the struggle that comes with deafness. Thank you for letting my pen witness a place I needed to travel, and for bearing witness with care to what I call, “these days.”

In limbo

Driving to work and seeking distraction from this sombre state, I listened to my favorite music in the car. It reminded me of the impending grey days before the CI, when I became less interested in music due to further loss of hearing. I could 'see' the music through a fog. It is there, but I can't touch it. I arrived at work and quickly became discouraged and sullen. Everyone and everything sounded awful to me - flat, lifeless yet imposing. I couldn't hear the children. It was mumbojumbo. I felt myself retreating and feeling less social even though I feel supported by my fellow workers. I felt distracted. I want the CI back and all its promising benefits.

I heard back from the audiologist who wanted to connect with me and make sure I was doing OK. He was very reassuring and acknowledged the difficult time I am going through. The surgeon then asked me to come in and meet with him. I asked Mark to accompany me, as I needed a hand to hold. (He has been a rock through this trying time.) The doctor was also affirming and explained further what had happened in my case. He was very apologetic for what had happened. I was then given pre-op and post-op instructions and will await a surgery date. I hope the days in limbo won't be long.

I asked the audi just how big is a human cochlea? He presented a fiberglass example of the cochlea (photo is shown below - the cochlea is on the right edge of the fiberglass piece). I was surprised at how miniscule it is. Lucky for me I had my camera in my purse and took the photo to share! He also presented the silicone array for the photo - this little miracle that blows open doors to sound for many deaf people. The curve at the end of the array is what hugs itself inside the cochlea, sending signals to the auditory nerve that is attached to the cochlea. On the array, the little wire halfway is what the surgeon uses to insert the straightened tip (22 electrodes included) inside the cochlea, and then releases it, enabling the tip to curl around the perimeter of the cochlea. In my case, it was inserted prematurely and somehow folded itself back, so it was dislodged inside the opening about a quarter of the way in. Many doctors have erred at not inserting the electrode array fully as they are hesitant to push the straight tip too far and create more damage. However, the "fold back" of the array is unheard of, so this leaves the medical profession scratching their heads.

During surgery, the array will be removed and checked out. It is a $20k piece of equipment and if it is salvagable, it will be re-inserted. However the surgeon has a low threshold for error and may replace the whole thing. There will be some scar tissue growing on the device so it may not slide right out. However it is much easier to deal with than the first surgery as it doesn't involve any drilling.

The result of the CT Scan

The CT scan showed abnormality in the placement of the electrode array. It appears to be folded back on itself. This explains alot of the results I've been having. Before doing surgery for re-implantation, the surgeon wants to solicit some opinion from other surgeons before doing anything. They are also in contact with the experts at Cochlear Corp.

I am quite relieved, as this means better things to come. I know I am in very good hands, and the CI Team are bending over backwards to resolve the issue. I'm sure they wish they had a magic wand and could just make this all better. I will have surgery as soon as possible.

I have gone back to the hearing aids until this is resolved.

I thank every one of you for your support and encouragement through your thoughts and prayers by way of email and mailbox, to the girls who have to live with the frustration of the severe loss of hearing in the last few years. I thank the employers who are patient with me for the time required of the CI operation(s) and the extra adjustments that this has taken for me to settle back into my career.