Wednesday, February 20, 2013

Her Voice

Amidst the shock and horror of discovering that our family was trapped in a web of labels and uncertainties, one thought continued to race through my mind- "her voice"... as the thought pulsed through me I reached for every crevice, every dark hidden corner to find it. I was longing for one crumb- one memory to come rushing over me- a whisper... anything to put me at ease. The faster I searched the more suffocated I felt. It was a great fear of mine that I would never hear the sound of her voice again. And, worse- that I would forget what it sounded like.

Fast forward 2 years and it has slowly happened. The remnants of my mother's sweet, calming, familiar voice have drifted away. The inflection-the soft soothing sound and the incessant questions no longer exist in my mind. Those corners and crevices have been scrubbed clean and the last little droplets have dried into distant vapors. It has happened a lot faster than I expected.

I don't think I realized the weight I was carrying or the progression of losing the sound of her voice until this past clinic appointment. We arrived as we always do, greeted with kindness and enthusiasm to catch up on our lives. Our first visit was with our local MDA representative. She smiled as she pulled out an Ipad, a recent donation to the clinic. Already familiar with the device and its capabilities I began to write notes and questions for the rest of the clinic staff. I was turned slightly away, giving my mom space to visit with the rep, when I heard her speak. A simple yet timeless phrase- "hi, how are you?" Surprised, I looked up to find that it was not my mom who had spoken but the Speak It app on the Ipad that had voiced those words. I realized in that moment, that device-that automated female voice- had replaced every memory I had of my mother's voice. My spirit was crushed. My eyes intensely filled with tears and my chest began to cave in as I swallowed the existence of this new reality.

It's in these moments that you are reminded of the gravity of this disease. You come face-to-face with the giant standing in front of you beckoning you to claim defeat. It's another sling shot pulled back aimed at each one of your weaknesses.

I may have lost the ability to physically hear the sound of my mother's voice-but, her spirit, her gentle encouragement and her passionate-stand up and fight attitude, still shout so greatly inside of me. ALS has stolen pieces of my mother- but, rest assured that with each item stolen that much more is gained. My spirit and my life have forever been changed for the better.

9 comments:

  1. As the tears flow into the prayer bowls that are in Heaven, HOpe is a huge banner, Again I refer to John 11:4 Put it on your refrigerator. Everyday it is a message of HOPE

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  2. Prayers for you and your family. We lost my mom a short 16 months after her ALS diagnosis on 9/27/2011. I can sit here today and be just as shocked as I was the day she was diagnosed. How in the world did my wonderful, sweet mom have ALS? Please know I will keep you in my prayers. This scripture was very comforting to me. When I said,"My foot is slipping" your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul. Psalms 94:18-19

    If I can ever be of help please let me know. Jeri Ann Dewbre jdewbre@southplainscollege.edu

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    1. Jeri,

      I am so sorry for your loss and even more that you can relate to this. ALS is an awful disease isnt it? Thank you for the scripture and for reaching out. It means a great deal to me.

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  3. Congratulations, this is great to read from the carer, family viewpoint. It has to be a huge challenge. I look forward to more posts. Richard.

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    1. Richard-

      Thanks so much for the encouragement!

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  4. Thank you for sharing. My husband started losing his ability to talk in 2007. A few people thought he had a stroke, or with the slurred speech maybe he was drinking. His primary care Dr. didn't know the cause and he recommended a neurologist but that office didn't explain anything and didn't continue to find the cause. It was not until 2010 that he was diagnosed with progressive bulbar palsey, then ALS. By then it was too late to save his speech on a talking device. I long to hear his voice. I do still remember it but we have known each other for over 40 years. I thank God he learned to text so that is how he communicates while I am at work. He even worked for 3 years at a school cleaning and maintenance because he could write notes. It was a freak accident that he fell on acorns and broke his ankle which he couldn't walk on for three months. Apparently with him not walking it allowed the disease to work into this legs. Now he can only walk with a walker in the house and a wheelchair in public. He has too much upper arm strength yet so he can't have a motorized one.
    I experienced what you did when I couldn't reach him by phone and I had to drive home quickly to find out if he had fallen or what. I came in and he was sitting calmly reading prayers but I was in such fear I almost lost it but I wouldn't dare yell at him. It was a phone issue but I've driven home a couple of times in fear something happening. Every now and then I need to just let loose and cry because of the stress. When he chokes from drinking a liquid it is so scarey and I fear I won't be able to help him when he really needs it.
    I can only Thank God that his ALS is slow progressing so I will take everyday I can have with this man that I have known over half of my life. Thank you for letting me share.

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    1. I am so glad you shared your story with me- I cried and prayed for you as I read it. So much of me hates that we can relate at all to this. The choking is so scary isnt it? I often have to turn away as I know there is nothing I can do but let her work through it. Please- keep in touch and if there is anything I can do to help you through this please reach out... even if you just need a listening ear. Thank you for letting me know that I am not alone.

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  5. I'm so sorry that you are going through this terrible disease....my mom passed away almost 2 years ago and I'm still thinking what happened I never thought that something like that could happened to her, she was my everything. Thanks to god your mom still can breath OK that's the worse part of this disease, I'll pray for you and your mom so god give you the strength you need to keep on going. Just keep in mind live one day at the time, don't think in the future and don't waste your time doing research trying to look for a cure because there's nothing we can do, you can do research to try to get her more comfortable. Just love her and be there for her all the time you can that's what she needs all the love everybody can give her.

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