Kara Lynn .NET Blog

Recently, I find myself in dire need of “normal”. In this past year my hours have been possessed by the ugliness of endless disability applications, medical insurance entanglements, legal decisions, and the going around and around in a never-ending spiral of ALS research and hope-chasing. Last Friday we had incredibly warm and beautiful weather here in upstate New York. I filled my beach bag with toys and books and took it out to the backyard where I had spread a blanket. Aiden and I stayed out for hours blowing bubbles, looking at books, playing catch with a ball, and just getting giddy in the marvelous sun. I had hoped Aiden and I would both nap outside. We had been starving for sun and open sky all winter. But, Aiden wanted his crib. I finally took him in and he was asleep almost immediately as I laid him onto the mattress. I decided I should nap also, as I had not been feeling that great all week and knew I had not been getting enough sleep. As I tried to sleep on the living room sofa, the bright afternoon sun coming through the large windows, a huge wave of depression came over me. On this first beautiful day of the year, here I was in my silent and dusty living room trying to sleep, trying to regenerate some strength, trying to conserve my energy. This was NOT ME! This was NOT MY LIFE! All of this, the ALS, the medical appointments, the never-ending detox, all the fucking reading and chasing of theories and hope, the dignity-robbing questionnaires from Social Security and my employer’s disability insurance company, the search for a lawyer who can help me get Medicaid. This is NOT ME! I don’t want this anymore! And so I was flung to a deeper low. I wanted to shake this all off. Shake off the ALS and all the crap that goes with it. It was NOT ME! THIS IS NOT MY LIFE! I couldn’t wait for Lewis to get home! I wanted to barbecue, go for a walk, plan the garden, talk about summer. I was in desperate need of my life back! I needed normal. I need normal. I made huge decisions that day. I decided to live above this condition. I decided to never spend more than a few minutes on any bureaucratic paperwork, and to rush it out of my hands as quickly as possible. I decided to keep medical appointments as few and far apart as possible. I decided to dance more. I decided to exercise as much as I could and push through gravity, to be lighter than gravity. But every decision felt like a little bit of a lie. I did not feel the ALS relent as I shook the core of my being violently. There must be some way to wake the sleeping part of my being, to realign it, to get me back on track, in harmony, functioning fully. But for now, I need normal.

-kara