In addition to my efforts to raise awareness and education in the medical community, I seek to encourage and empower others. My passion is to offer the needed extra hand of help and a shoulder of encouragement.
Lately, I have had many sleepless nights. Many moments of praying, "God..How will you use me? How will you use this in my life? What can You reveal in my life that shows Your hand in all of this?"
I'm not having a faith crisis.
My faith is steadfast.
The lens through which I view the world has been altered.
My questions come from what I now see through this new lens.
Skewed and distorted images have become frighteningly clear.
I do not like what I see.
I see men and women raw with the emotion of their illness lashing out at others.
Bullies have arisen in our small communities of hope.
Prejudice actually exists due to number of surgeries, presence of syrinx, symptomology, ability to work, decisions about having children, even minor grammatical errors.
Communities of hope become necrotic at their core.
Clarity of sight is not a gift.
Many live in situations with supposed loved ones who daily berate and belittle due to their lack of understanding.
Intolerable cruelties are spewed forth and the sting of harsh words fall on precious shoulders and stick, never to be scrubbed off.
Financial ruin lurks at every turn. Every moment filled with the "what-if's" of life.
Fear of failing health and lack of resources nag at the silent places in souls.
Taking steps to secure our financial futures is criticized by those who are just like us.
As if they don't have the same fears.
Or maybe the problem is that they have given up and are jealous of our ability to rally and continue to fight and press forward.
We become less lovely to be around.
We know this is not the game of life.
This IS life.
We do not take it for granted.
We may go into our cave of quiet and dark out of necessity-
and blessed is the friend or relation that ventures into that cave with us.
The cave need not be massive.
Only a few will enter.
We cry alone in the night.
We cry out loud at the injustice of it all.
We cry silently for what has been lost-for what never was- and what will never be again.
How is it that we never saw this clearly before?
For myself, I have a running mental list of people who need their lenses cleaned.
Surely they just do not see clearly.
For if they did, their actions would be more carefully chosen.
Words would contain less venom.
Shallow, petty complaints would subside.
Life would be grasped full force.
Amends would be made.
Excuses would no longer be offered for bad behavior.
Excuses are but empty boxes
meant to fill in the vacancies left by hurt, failure, dishonesty.
They are a poor substitute for what is really needed.
I have two life threatening neurological disorders that affect every moment of my life.
I refuse to go quietly and humbly into a place of defeat.
I refuse to accept ill-treatment from others.
I refuse and reject many things these days.
I boast to stand strong and proud.
Then in the next instant- I'm alone again crying in the shower or hiding in the bathroom texting the only two people in the world that care enough to live every moment of this with me.
The only people that can handle the truth.
The ones I don't have to muster up a smile for and say, "I'm fine".
I realize how clear my lens of life really is.
And how all of this clarity still offers no real answers - yet urges me forward .
I realize what a contradiction of emotions I am and I despise myself for it.
My head aches.
I reach up to touch it and feel the new deformity there.
A tear rolls down my cheek.
Anne Lamott's quote comes to mind, "My heart was broken and my head was just barely inhabitable."
I pick up my laptop in the middle of the night and I write.
I write for no one in particular, yet for everyone.
I write for myself.
I write because the blank page makes no judgements, has no expectations and has never let me down.
I write and once again- I am free.