Radio Silent

The past couple of days I’ve been radio silent. I’ve been busy…I’ve been spending time with my family, time with my studies, time with my thoughts. My surgery is in 12 days, and whenever I think about it, I clam up and want to cry. My whole life flashes before my eyes and I begin to weep about the future I so long to see. And then I come back to the present, and I try to make a fist, and I begin to cry again over all the things I can’t do and how my life has changed so dramatically in less than a year. I get angry and frustrated with feeling like a helpless wet rag. 

Today I was watching “Chef’s Table” on Netflix. Such great storytelling about food by people who live and breathe the experience. Well this particular story was like none other for me. As I was being drawn into this magical journey of cooking, it all came crashing down. This particular chef, Sean Brock, was afflicted all of a sudden with double vision! He couldn’t function, he couldn’t see…he described in detail the horrific turn of events, how he spiraled out of control into substance abuse, and how it impacted his life and livelihood. It was all because he was struck by myasthenia gravis…just like me… I sat there watching the show, mouth agape, shaking my head. I feel your pain Sean, I’m in that boat of suffering with you… but I don’t have the liberty of just crashing and burning out of control. I have to somehow keep this wet rag standing until something comes along that can hold me up. 

I know there is hope for me, I just don’t see it right now. I don’t feel it. It’s not in my vision and so I feel tired and hopeless and scared and lonely. 

Each morning I wake up hoping I’ll feel better and each day I’m let down again. So I have to take the day in small doses. I have to sit in the sunshine and be grateful for those five minutes. Later will bring me something else. Now is just right now. Silent.