I’m Confused

If you and I were sitting at a table, just talking about life and letting conversation flow, I would hope like any other normal conversation, there would be transition sentences to help me follow the train of thoughts of topics at hand. Maybe there is too much of a writer’s dream in that thought. But maybe that is my problem–I read too deeply into things; and my lip-reading often leaves my decoding of transitional phrases not what the transition is even about..so off sometime that my Dad signed to me (after patiently trying to help me understand), ” I’m changing the subject.”

“So, we’re not talking about writing letters anymore?”

“No.”

Such clarity, simple change. After yesterday…I could have used a little clarity, because what I have been living with over the past two or so months is anything but simple change. My Life with NF2 is appropriately labeled more as, My Life is so Confused.

As you know, my summer started with the increasing cataract hazy blur. Add the grey veil in the right eye, correction surgery on the left eye, endless eye drops, full and well recovery for the left eye while the right eye worsens…it has reached a point where I feel more blind with my glasses on than off; and I am already as blind as a bat anyway. Except even bats are better in knowing their surroundings–they see as a result of high pitch sound waves and the echo replies. High pitch frequencies were the first part of my hearing to diminish. So, me: no hearing (which really is not all that unbearable)–but it only becomes totally unbearable when you cannot see or when you see double, all in which is now me.

I would venture to say that 98% of this perpetual blindness is the current swollen right optic nerve. My MRI is on Monday, ophthalmologist appointment on Wednesday and Children’s Hospital on Thursday; next week is going to be a long week. But I have questions and ready for more answers, regardless of what the scans show. When I have my glasses off, my left eye does the controlling, though I try to refrain from zoning my right eye out entirely and keep it functioning straight ahead. Most often though, when I lip-read, write or even type…my right eye acts like a lazy eye. It is becoming a bad habit.

In preparing for the art show, I even painted in this fashion:  one eye and one hand. No glasses.

When we were setting the dates for my eye appointments in May, I specifically selected at the time (for what I understood) as my last appointment, post-surgery to be after the Art on the Lawn Festival. Summer in all fullness and yet eyes worsening, I was not only counting to the art show, but to yesterday where I had the understanding from earlier on  that I would be tested in the left eye for the new glasses lens to match my new eye lens they placed at surgery. I felt that would solve some of the bur problem when needing my glasses on…I can’t go everywhere without them; Although I do most often when at home, once even going down the stairs as it made the dizzy blur decrease.

These little but big changes–I was in anticipation! Instead, I left the clinic..with a dilated left eye and grey veil in the other…in my now confused mind, I had wasted a day just waiting (literally, almost five hours)–for nothing. I was so frustrated, angry, confused, not to mention hungry, and crying so hard, Mom pulled over on the highway to give me some clarity. I still don’t understand why my surgeon wants me to wait another 2-3 months, have another check and then get my new prescription if the eye is good even now. I don’t think I will make it that long! I am still confused.

But I am also wondering what next week will hold. And I often want to ask God for clarity in this mass of confusion I call a body. Not really a prayer, not really a demand…a simple question: What are you doing? And it’s a question that only faith can clarify.