Coming home was supposed to be a joyful event. Coming home was supposed to make things all better. I was supposed to be happy when I came home. I am happy about being home, about getting back into my apartment. I am happy to be with my friends. But coming home has reminded me of another very dark side to my life, that I am not only living with ALS, but dying because of it.
While I am on the road, there is distraction, an excuse not to look at the normal functions of my life. I can pretend that life is temporary, that my disease doesn't really matter all that much. When I am driving, especially a long distance, I feel free, almost like a normal person. When I am home, that feeling goes away. I am living my life again, a life filled with ALS.
It's a pretty dark place most of the time. When I start each day, I wonder why I bother. By the end of each day I find myself staring at the pills on my dresser, wondering if I should just take them all tonight and be done with it. This long, slow, torturous process is killing me, literally. It's also killing my spirit along the way. I don't really want to go through this; I just don't have a lot of choice. To be honest, most times I really wish I was dead. Most times, I am faking it just to get through another day.
My birthday party is on Sunday. One of my friends said to me last night, "Don't die before Sunday. I would miss you at your party." I thought to myself, just for a flashing moment, "Does he know something about what I am feeling?" I really am so done with this. It's hard, it hurts, and it's taking too long. I will be glad when it's over.
Oh my dearest son, It must be so awful for you. I wish there was a way to make things easier for you. It pains me to know how badly you are feeling and there is nothing I can do to help you. I love you dearly and pray for you daily. Love Mom
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