I hate needing help. By need, I mean I cannot get out of bed without help. I would fall into a heap on the floor if I tried to now. The process of the deterioration of my muscles has been humbling and humiliating. I have felt guilty for being humiliated. Why am I embarrassed for having a disease? Before I started showing symptoms of muscular dystrophy I was a strong and independent young woman. I worked to remain strong in body and spirit, not letting heart problems slow me down at all. I was adventurous, spontaneous, and enjoyed helping others. No one had to help me with anything. I entered my mid-twenties feeling empowered and ready for an exciting, full life of love and travel.
Now, 12-ish years later, and I have to have someone lift me up to transfer from my bed to my powerchair. I cannot hide the fact that I have lost abilities I once had. The stares of strangers when I try to reach something on a shelf still bother me. For M's sake, however, I act oblivious to them. She needs to know the strong, empowered mom I once was. I often think about how different her life would be if she had been born a few years earlier. A few more years of remembering her mommy walking, playing on the floor, swimming, swinging. She would have really enjoyed me- I liked to play, a lot. I would have thrown her in the car for a surprise getaway to a friend's house, because that is how I used to roll.
Now, I just roll, literally. :) I mourn for what could have been. Who doesn't? I have learned that there are not too many people out there who live the life they expected to live. Learning how to be grateful is a process, and I can control my attitude.
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