Living with Guilt

The dictionary defines "guilt" as "remorse caused by feeling responsible for some offense" or "the state of having committed an offense."

For me, living with Kennedy's Disease often means living with guilt. Two forms of guilt that I live with are described below. One I can do nothing about, but it is still frustrating. The other I have more control of, but it is a constant learning and maturing process for me.

Guilt #1: (I cannot do anything about this one except learn to live with it) As a parent, I never want to do anything that might harm my children mentally, emotionally or physically. Today, and most every day, I live with the guilt that I passed the defective "X" chromosome on to my daughter. In addition, there is a chance that it was also passed to my grandchildren. Hoping for a treatment or cure, whether medical or miracle, is what I live for today. That miracle is not for me, I am looking for anything that might help my daughter and her children.

Guilt #2: (This is something that I have control of and am responsible for) Living with the disease is often just as difficult for caregivers, family, and friends. As I strive to remain independent, I often become frustrated with my loss of certain physical capabilities. Yes, I realize that I need some level of support to continue to live my life. Unfortunately, I often look upon this support as "mothering" or even "smothering." The primary care-giver (my wonderful wife) is occasionally the unintentional beneficiary of my anger and frustrations of having to live with this disease. I do not mean to lash out, but sometimes I just need to vent and she is often just the person who happens to be in the wrong place at the wrong time. I realize there is no excuse for my anger and I know she never signed up for this when she married me, but for some reason she continues to put up with it. The guilt that follows my outbursts or actions leads to even greater frustration because I realize I am hurting the one that I love.

You would think I would learn.


 
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