This disease blows chunks

A short reminder. I will be celebrating four years of living with ALS, officially diagnosed on the fifteenth of March, two thousand eleven. I celebrate my tenure because the alternative would be in memoriam. Being alive is, in my situation, worthy of a party every day. Two years ago, when we found out my daughter, Sarah, was pregnant with her third child I hoped to last until the birth. After Asa was born in June of last year, I vowed to survive a while longer. Upon learning for a fact that Nick and Paige were moving to Austin, I promised myself to live a little bit more. Seeing the boys every day and doing my best to impact them enough for them to always remember me, driven by my insecurities and self doubt, I find myself almost obsessed with the obligation to stay on this earth.

Looking down the road toward events large and small as motivation is in no way a guarantee that I will fulfill everyone's hopes of seeing me alive for the foreseeable future. To be quite honest, each day has its anguish and each day ALS reminds me of its presence. The best way to explain this phenomenon is to put it in terms of percentage. Before the disease intruded into my life, a good day rated 100%. Now a good day rates 25%. A low ebb droops to maybe 12% and at 10% I would rather be dead. Most days I have moments or more where I approach my all time lows. Maybe the weariness that accompanies several years of struggle has lowered my numbers. Almost every day brings ups as well as downs. They serve to balance each-other.

I'm not trying to depress you. I've my hands full duking it out with the beast within myself. Love and hate create the perfect storm of bipolar condition imaginable taking frenetic flight in my head. A maddening Whirlwind of Disaster!

But enough about me. How are YOU doing? I'm A okay for a lifer. I will continue on for as long as I can. What other choice do I have? Answer me that. The last thing I want is to disappoint.