It’s okay to just “be.” We don’t always have to be contributing to the world.  Sometimes just breathing is all we can do and that’s what we should should focus on.

After my Acoustic Neuroma Diagnosis I reluctantly showed up at the appointed time for brain surgery. I can’t say I showed up because I wanted to be a beacon for God. I showed up because the alternative was death. I inhaled, exhaled, and went to sleep for a nine-hour surgery.

I then had to learn who the new “Sally” was.  It has taken almost five years, and I’m still working on it, but I have learned a lot about myself and what I think is important in my life.

Today I can tell you the best time to walk on the beach to find fascinating things is after a storm when the tide goes out. A few years ago I couldn’t tell you that because I hadn’t lived by the ocean. Who we are and what we know changes daily. What we care about is tweaked or rocked, changing our life perspective continuously. I have learned to manage pain and cram living into low pain moments. When I can’t, I focus on God, His love, and His ability to bring peace into my life.

A great resource on Acoustic Neuromas. Mark Ruffalo, the Actor, had an AN. Listen to his story on http://anausa.org/

Listening to Mark’s story was so amazing.  I related to so much of what he talked about.  It is a hard journey, but we do survive and thrive.

I laughed when he shared that the best thing about single sided hearing is sleeping.  I know that when I put my good ear down, I sleep like a baby.

The one thing he didn’t talk about was head pain.  I am curious. . .

I watched a documentary last night called “The Crash Reel” about traumatic brain injury(TBI).  It was very well done and made me think about the TBI that Acoustic Neuroma patients experience as the result of surgery.  This morning, it prompted the following musings.

 Invisible & Misunderstood

 (Life after a traumatic brain injury)

 We may look perfectly normal but feel far from that inside.  They call it Traumatic Brain Injury but its result is a Traumatic Life Change.  We struggle to convince the world, and insurance companies, of abnormality even while reaching futily for normality.

We try to put aside pain knowing that the best we can achieve is less pain.  We try to deny pain yet find the need to emphasize it constantly in order to seek help.  This constant push/pull of our new existence causes us to flex between sanity and insanity.

We then wonder why we feel less.  Perhaps it’s because we seek to be more.  More than a statistic of beating odds in the wrong direction.  More than an identity of disabled.  Striving to find our place between able and dead.  Reaching for beauty and peace in the midst of a storm.  Trying to find value in a constant search.  Trying to think out when our souls are pulling in.

Not trusting our own judgment given that our brains are no longer whole.  Seeing looks that tell us that we are not. Pity is a two-fold look.  One of empathy and knowing that we have comfort.  The second of despair and acceptance that we are now different.  Different in ways that can’t be put into words though we try.

Something is always out of reach.  You know it’s there but can’t quite reach it.