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“…Nothing about what most people would consider an average day is guaranteed for me. Will I still be able to walk today? Will I still be able to lift my arms over my head or stay awake for the next hour or stay awake at all? Will I go blind today? Will I be able to remember most of my words today or none at all? This is how I live. Every single day. The not knowing shuts me down and keeps me from wanting to expend energy I might require to get through a shower tonight before bed. If I climb that flight of stairs I might not have the ability to make it through meal preparation. If clean the bathroom, I will need to go to bed a half-hour early to have enough energy to get through tomorrow’s work day.

And so it goes. My days and nights are constant calculations of what I can get away with right now that won’t adversely affect tomorrow…”

Photo Credit: Muffet on Flickr

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