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.”