Monday, February 6, 2017


My voice is definitively started to diminish. It is thick and slow. I can tell how tired I am by how difficult it is for me to get my words out. I need to bank my voice as soon as possible. I am going to start on Wednesday. From the looks of things, it will take many hours. My friend Ellen did a bunch of research for me and helped me find a site I am going to use. It really is amazing what is available on the Internet.

It's kind of ironic because I never really liked my voice. When I would hear it recorded or outside my head, it always sounded very high pitched and nasal. Now, I don't want it to go. I will most probably need some sort of assistive talking device. I can use the computer programmed voice or my own. I choose my own. It is a part of me that I can preserve.

Though I haven't explored this too thoroughly, I believe that part of what I can record are expressions that are unique to me. For example, I might want to record "All is good in the hood" because I say that often. Or "skadamooch" because I use that word to get Sonky to move. Or maybe "Jackson, put your boy part away!"; "Asshat"; "Fuck-it!". The possibilities are limitless!

These expressions are indicative of my voice. Not the voice that you hear, but the voice that is within me. My self, sense of humor, way of being, what I want to say, who I am, what I want to be. Banking my actual voice gives me the opportunity to preserve what I sound like but also partially preserve who I am. I think lots of people who have neurological diseases - ALS, MS, Parkinson's disease - are of the opinion that one of their greatest fears is to lose themselves, who they are, in this journey. Will I lose the ability to express love, or retell a funny story, or to stand up for what I believe in because I can't vocalize it? Will my witty comebacks, or trash mouth be as effective if I speak more meticulously or not at all? I already can not change the speed or assertiveness of my expression, so when I reprimand the dogs it doesn't come out "Cut-it-out-Jackson!" but rather "Cut  it  out Jackson."  I will more heavily rely on my writing to reflect my voice. More blog posts, type-written letters, stories, personal narratives, emails and texts. I will make sure that my voice is heard.

Live to Love. Love to Live.

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