I have found my "voice" and I refuse to be silenced. Paradoxically, it took losing my voice to the ravages of Lou Gehrig's Disease to find my writer's voice. I started my blog in 2010 and never really knew what to write about. I was pent up and fearful. I was afraid that if people knew what rollled around in my brain they would not like me. Today, frankly my dear, I don't give a damn.
Since the ALS, I have learned that no matter the professions of love and support, ultimately, I am alone. All the thoughts and prayers in the world, while appreciated, do not talk to me, don't read to me, don't scratch my head when it itches, don't make sure I'm not being ignored, don't get my meals ordered, nor does it hug and kiss me.
I cannot tell you how many times I was assured, "I will be there for you until the end." only to look around and not find them there. I've been told countless times, "If there's anything I can do..." you know the drill. It's gotten so that I am jaded to this banal gladhanding. I believe none of it though I graciously accept it. I realize that they absolutely may mean it at the time.
Like I told my husband at the onset of my disease, people are uncomfortable visiting a nursing home or hospital. They are much more at ease visiting you at your home. I cannot even fault them for that. I used to feel the same way. Until we placed my mother-in-law into a nursing home, I spent less than an hour in one. After she was admitted into her first nursing home, an okay place called Life Care Center of Burien. It smelled of urine but it looked decent. We, my husband and I, visited infrequently and it was not any fun. We endured my MIL harangue my husband incessantly.
When we transferred her to a new home in Ellensberg, we made it a point to visit every weekend. Traveling over Snoqualmie Pass each and every weekend because we were the only family members who cared to bother. Then again when we moved her to Ruthaven in Maple Valley until her death. We, definitely, did not gladhand her.
Since the ALS, I have learned that no matter the professions of love and support, ultimately, I am alone. All the thoughts and prayers in the world, while appreciated, do not talk to me, don't read to me, don't scratch my head when it itches, don't make sure I'm not being ignored, don't get my meals ordered, nor does it hug and kiss me.
I cannot tell you how many times I was assured, "I will be there for you until the end." only to look around and not find them there. I've been told countless times, "If there's anything I can do..." you know the drill. It's gotten so that I am jaded to this banal gladhanding. I believe none of it though I graciously accept it. I realize that they absolutely may mean it at the time.
Like I told my husband at the onset of my disease, people are uncomfortable visiting a nursing home or hospital. They are much more at ease visiting you at your home. I cannot even fault them for that. I used to feel the same way. Until we placed my mother-in-law into a nursing home, I spent less than an hour in one. After she was admitted into her first nursing home, an okay place called Life Care Center of Burien. It smelled of urine but it looked decent. We, my husband and I, visited infrequently and it was not any fun. We endured my MIL harangue my husband incessantly.
When we transferred her to a new home in Ellensberg, we made it a point to visit every weekend. Traveling over Snoqualmie Pass each and every weekend because we were the only family members who cared to bother. Then again when we moved her to Ruthaven in Maple Valley until her death. We, definitely, did not gladhand her.
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