Things I think About When You are not Listening ~ Life With NMO

This is what I think about when you are not listening.

I am a highly energetic person who is trapped in a body that is continuously fatigued.   It hurts when I stand, I lose my balance when I walk, I feel normal when I run...until I stop.

My brain sloshes from right to left inside my skull. Always right to left. My vision becomes a jumpy freeze frame as if an old film 35 mm film projector has bounced off track. This experience repeats then fades aways as if the breeze brings relief.

At all times I am alone, even in the company of others.  As if I am a character in a Murakami novel. What bothers me about this surreal state of being is that Murakami characters are always the boring quiet type; why an energetic person relates so well to his writing...I am not sure.

I am the everyday invisible man going on a journey alone. Moving forward on a pilgrimage to the mecca of me. With paths of discovery of how to live with this monster within. I am lost. Incessantly looking within ever so deeply asking myself the same question. The answer never comes...

Constantly watching others look past me trying to see my monster. Pour me another drink and I'll tell you my story. You can nod along and then tell me how good I look. I love this part, for no matter how deep my monster may hide my ego stands up and looks you straight in the eye. I am alone even during conversation...smile, nod, move along.

I should go see a doctor, but I won't. I do not want to be placed back into an MRI tube nor do I wish to have vials and vials of blood taken from my arm. I do not want to hear another kind nurse tell me a sad story about her last patient. I have as of yet to heal from all the previous harm that my past doctor visits has caused to my psyche.  The beat goes on and I turn to the next page.

Russian roulette, preventative medications, kale, bourdon...salvation or purgatory?

Trust me, I am only deep enough to be shallow. A drunk barstool prophet preached those words to me. I will never forget it. This is the truth of me: inwardly I am a scared-pessimist-poor me-take me now Jesus type of person.  Most people that I meet are depressed on the outside, and I question if they are happy on the inside? An odd juxtaposition.

What I miss most in my life is being embraced by reality, for mine is at all times in flux as if I am walking on the cliffs of insanity.

My disease progresses as my health progresses. The seasons change.