Unpublished blog posts sit abandoned in my draft folder. One is bitter; Another begs victim hood. That is not what I want to put out into the universe. So here I sit, gazing at my keyboard, trying again. I’ll just give it to you straight.
Physically
The functional use of my arms is gone. That means I can still use my arms to knock things off the counter, but that’s about it. If we meet for lunch, you’ll have to feed me. Don’t worry about the mess. I’ll have a color coordinated bib, with a convenient Velcro closure, neatly stowed in my pee bag.
The real bummer is that my progression has reached my mouth and throat. The changes aren’t noticeable unless you live with me. But the signs are unmistakable — excess saliva, choking on air, hoarse, reduced voice volume, muscle spasms in my throat and neck. And when I’m tired, I sound like #45 with dry mouth, “God bless the unitshed shates of amershith.” I have an appointment at the multidisciplinary ALS clinic next week and will meet with the speech the pulmonary therapists. I had been hoping for an effective treatment before I reached this point, but it is not meant to be.
Emotionally
I’ve been struggling. My emotional bandwidth isn’t there as I’ve switched from waterproof mascara to no mascara at all. Two local friends with ALS died this week. Tammy was the second woman I’d met with ALS. I was drawn to her gentle spirit, strength, and endless optimism. JT had unmatched charisma and charm, and a wicked sense of humor. Both were deeply loved by family and friends. Coping with my own loss and sadness for Tammy’s and JT’s families is overwhelming.
Spiritually
I’m at peace with my maker yet miss being part of a faith community. I’ll add this to my New Year to do list.
Return to Gratitude
There’s a time to grieve and a time to live. I do both with profound gratitude and peace in my bones.
What are you grateful for today?
I’m Forgiven and Free and grateful I get to try a recently approved medication that may slow my progression!
December 10, 2017 at 2:53 am
As I read this I hurt for you my friend. I think about you everyday and am amazed at the strength you have. My thoughts and love are with you. You are touching many lives in your journey. I am so glad to call you my friend. ❤️
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December 10, 2017 at 4:51 am
Oh Shelli i have missed you and I feared it was progression. I am so sorry for your losses of friends and abilities. ALS SUCKS.
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December 10, 2017 at 6:14 am
Much love to you, Shelly! My heart aches, though I can still hear your fantastic laugh. I wish we weren’t on opposite coasts, I’d love the privilege of velcroing or applying mascara. 💗
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December 10, 2017 at 6:22 am
Shelly, I am so sorry for the loss of your friends, Tammy and JT. Having local friends who can relate to what you are experiencing must be such treasured friendships. Your loss and heartbreak must be immense. It must be overwhelming to try and process their loss while you are contending with your own loss of your hands’ mobility and the progression affecting your throat and voice. Your ability to be funny in the midst of this amazes me. 45 with a dry throat (bwhahaha bwhahaha!). I’m glad you get to try that drug. I hope that it does slow the progression. Very snazzy pants! I love the color and style. What am I grateful for? I’m grateful for your generosity in sharing with us. I learn from you and am reminded to embrace each day and be grateful for the small moments that make each day special.
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December 10, 2017 at 6:59 am
When I passed you the other day and you didn’t wave back my heart sunk. I knew your arms just wouldn’t follow through with what you wanted to do. I’m so sorry for your current losses. I continue to admire your choice to try and rise above this awful disease with bits gratitude. You’re a beautiful example to all. Please know we are here for you, just a couple doors down if you need anything. Prayers for you continue. May you feel the breeze of angel wings as they watch over you.
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December 10, 2017 at 12:44 pm
dearShelley, i can totally relate to everything you Write. My progression is fast and I’m pretty much confronted with the same symptoms you are dealing with right now. But i love how your intention to be positive and at ease with the way things are prevails. May you be well today
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December 10, 2017 at 1:41 pm
Hi Girl- we pray every day for you and the ALS community. Thank you for letting us know what’s going on.. I hate that I love so far from you ❤️😘❤️
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December 10, 2017 at 3:25 pm
“Wife, mother, grandmother, daughter, sister, friend, educator and ALS advocate …”
You are rocking all of those; I hope you know that! I’m sorry for the loss of people close to you. Not due to ALS, but I’ve experienced the same this year times two. Thank you so much for the update, and it looks like the new treatment offers some increased hope!!
A motivational speaker once said: “you need to be stronger than your excuses.” You have navigated into strength territory way past that …
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December 10, 2017 at 3:57 pm
Shelly your courage is amazing. I love our fun times and I will be by you every step of the way!!
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December 10, 2017 at 4:54 pm
I admire your courage. Thank you for sharing your journey. I know exactly where you are because of my sister and my heart goes out to you and your family. God bless
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December 10, 2017 at 10:29 pm
Hi Shelly… my first thought is mascara- who needs it, not you, you have always been beautiful and your smile and laughter were always infectious. I never had a lot of friends, always felt a bit of an outsider… I can honestly say you were a person I could trust to smile, say hello and mean it. I was inwardly jealous of your physical talents. You threw hard, and hit harder… and were a fish in the water.
But mostly, you were a person I could trust to always say hello, I needed that when the “mean girls” were out in full force. I know I am a better, more compassionate person because for a brief time you were in my life. You were and are a force to be reckoned with…never has there ever been a more open, articulate, and honest resource for things people shut down and don’t share. Never ever apologize for the anger- there would be something wrong with you mentally if you weren’t angry. You have used your emotions up and down to help others become aware. Sometimes we need people like you who are brave, open and true to yourself so we can wake up, stop being so self absorbed and realize all of the precious parts of life. Brian and I talk about you all of the time. We also share your wisdom. You have touched so many people… and you still will Shelley, you do not have or not ever needed arms that work to reach people where it counts the most…we love you, working arms or not…Meg Drummer and Brian Grubbs
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December 11, 2017 at 5:20 am
Hi Shelly, we truly are twinsies. I knew my ALS has been progressing at warp speed the past 4-6 weeks. Friday, at my ALS clinic visit , everything was confirmed. My body, voice, swallowing, respiratory capacity, limb strength etc have all significantly declined. I need to get my g-tube before my respiratory status declines further which would potentially eliminate me as a candidate to get it. So that’s soon. I’ll keep you posted. I, too, have been struggling with significant depression. Crying several times a day, unable to talk or breathe through the sobs. Did you see the article on depression in the ALS News Today? The woman’s excerpt from her journal could have been mine. I started back with my counselor. I’m grateful for good friends who periodically come over to my house and dress me, do my hair, empty my foley…but mostly I’m grateful for their love, support and joy. I love you. 💖
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