One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Tuesday, January 17, 2012

Disability Shackles Time

Without Sarah Marshal Neal today, my family would be without bread, milk and the things I needed for Tony to make dinner tonight. I am really tired. I have been doing some esoteric research with some frustrating results. I am having aches and pains. My fevers are coming and going. My fuse is very short. I am irritated and uncomfortable. I go from freezing to sweating. My stomach alternately hurts and my bowels have serious issues. Then suddenly I am starved. I have drunk more Gatorade than I care to see in a life time.  I have finally come to the place where I do not feel like it is safe for me to drive.

More than anything I am tired. That leaves me irritated. There is much I WANT to do. Just tonight, there is a family issue my husband wants me to “oversee and coordinate” for his extended family. And although the me of several years ago would have been excited all I can do is mentally subtract in my head the amount of active time I will have if I do what I have been asked.  I have laundry piled up on the kitchen table and a husband whose cook and kitchen cleaner because I am so done.
It is frustrating to know that I can count on activity leading to this condition without explanation. Frustration that there is a world I want to be part of that I am worried is passing me by while I slowly move through life. I am frustrated because the condition affects my memory short and long term and even worse interferes in my ability to verbally communicate.

Tired, so tired. Frustrated, so frustrated. Beaten and shackled are feelings that one with disability can overcome for a short while only to discover that it returns again and again and again.

This was written last night before I went to bed. This morning after a nightmare free sleep, I have awoken refreshed and the clock is ticking. How much can I get done before my disability sets in again and robs me of the opportunity to do more of the things I want to do. It wasn’t until this morning as I watched my computer count down the minutes and seconds as it processed a task that I realized this. Time is the commodity that disability shackles. Time for housework, actual work that pays something, for friends, for my son and husband, disability shackles time in much the same way as anyone is shackled to the slowly ticking countdown of a computer processing something.

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