Friday, January 26, 2018

To live in hearts we leave behind... @Jerry Stan Williams

When I went looking for a quote to go with this post, the one by Stephen Hawking seemed to have been said specifically to describe Stan Williams. I met him a few months ago at Aroma. We drank coffee and talked about writing and families and South Side Sales and...oh, yes, ALS. I mention it last because he doesn't allow it to define him. He posted the following on Facebook the morning of January 24. What he knows and shares needs to be known and shared by all, so please ask everyone else to read it. Regardless of your political affiliation, please consider only the good of all and encourage your representative to do the same. To find out more about Stan, go to his Facebook page. - Liz
Concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically. – Stephen Hawking

Jerry Stan Williams
Here is my message to the legislators (don't tell them, I want it to be a surprise). Please join me to pray it will pierce to the heart.
Thank you. In June, 2016, in my 58th year of life, I was diagnosed with ALS.
For reasons that science is still trying to understand, ALS is a disease that destroys the motor neurons which control all voluntary muscles. As the motor neurons die, the voluntary muscles waste away and die as well. Death is 100% certain and comes most often by asphyxiation or pneumonia. Symptoms of motor neuron death and muscle wasting are
• Cramps, sometimes severe, debilitating cramps
• Nerve and muscle pain
• Muscle spasms which can last as long as a few minutes
• And constant muscle twitches all over my body, all the time
My ALS started in my feet and legs. For the past year, I have felt the symptoms creep ever higher in my body, so that now my muscles from my neck down are always twitching, cramping, and spasming. They keep me from relaxing and, most of all, sleeping.
My doctors have prescribed medications to reduce these symptoms. The medications I take for comfort measures only are: Clonazepam, Gabapentin, Baclofen, and Quinine. Possible Side Effects are drowsiness, dizziness, loss of coordination, blurred/double vision, unusual eye movements, tremors, swelling of the hands/ankles/feet, sleeplessness, nausea, rash, headaches, swelling of the face/tongue/throat, abnormal heart rhythms, depression, hallucinations, and suicidal thoughts and attempts.
My doctors have informed me of the possible side effects from these medications. However, we all know that comfort measure only treatments are often wrought with adverse side effects
To minimize my symptoms enough that I can function with a clearer mind during the day, I use CBD OIL. Possible side effects of CBD oil are: drowsiness, dry mouth, fatigue, and lightheadedness.
Jerry Stan and Lisa Williams
My friends, I’ve been given a gift. I can see the finish line. So I have an intense urgency to awaken others to the critical importance of living life deliberately, of savoring each moment, of living a story worth retelling. I must also condense what I thought would be 20 or 30 years of grandparenting into months.
As long as I have breath and a voice, I am:
• Speaking at churches, community groups, ALS fund raising events, and at my Alma Mater, Anderson University, in April
• I’ll be interviewed this May on Channel 13 with Bob Kravitz who sponsors an ALS event.
• I am writing letters to my grandchildren for their special days such as birthdays, graduations, and weddings
• And I’m writing my memoir of the lessons, wit, and wisdom that I learned from working as a kid for my grandpa and dad at their small town used car lot in Peru. The book is entitled, Used Car Lot Wisdom: Lessons From A Different Kind of Grandpa.
Thomas Campbell, a 19th century poet, wrote, “To live in hearts we leave behind is not to die.”
All of us with a chronic or fatal illness want to function as best we can, as long as we can. The drugs I have been prescribed keep me in a fog and leave me unable to achieve my life’s last goals. CBD oil calms my body and keeps my mind clear during the day so that I can achieve them.
CBD oil won’t cure me nor does it eliminate all of my symptoms. However, It does minimize my symptoms during the day so that I can be in the moments I have left with my wife, children, and grandchildren. I want to stretch each of these moments into a thousand. I want this last mile of my life’s marathon to be a story worth retelling, generation after generation, and, thus, live in hearts I leave behind.
*
(I swiped the pictures of Stan and his wife Lisa from his Facebook page, and I hesitated over my choices because I'm afraid someone will say or think, he doesn't look sick. He doesn't, although when you meet him, you know he can't get around that well anymore. But I used those pictures because they show that ALS does indeed take prisoners. Not only its victims, but their families and friends as well. If the use of CBD Oil loosens some of the bars on that particular prison, then let it be used--please. - Liz)

26 comments:

  1. Liz, what a touching and encouraging post. and what a hero Stan is--to spend his last days trying to help others. My thoughts and prayers are with Stan in this battle.

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    1. Thank you, Pat. He is a hero, isn't he?

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  2. Such a poignant post. I had a friend in Texas, he'd been a doctor who worked all over the world, then diagnosed with ALS. Another friend helped him write 2 books while he was confined to his bed as his body gave out, but his brain was still better than most of us. The selfless help of our joint friend allowed him to get the story of his life's work out, and also a fiction story he wanted to tell. Sending good thoughts to your friend and family.

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    1. Thanks, Roz, and thanks for sharing the story of that friendship.

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  3. What a wonderful post from a brave guy in the trenches of a debilitating and deadly illness. I'm so with him about the CBD oil--I've seen it make a difference in others' and I'm amazed. Thanks for sharing Stan's story, Liz!

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  4. I love this! It inspires me to continue living when I think I can't go on. How brave he is!

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    1. I'm so glad to see this, and I know he will be, too. We all have to dig for it, don't we? My prayers are with you.

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  5. I love reading about people that inspire and live life to the fullest - no matter what life throws their way. Thank you for sharing this with us!

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    1. Thanks for coming by, Trisha. He's definitely a lesson to all of us.

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  6. Jerry Stan, you inspire me to get out and live. Thank you, Liz, for telling his story.

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  7. Makes one stop and think about how fortunate they are. Very good post! Thanks for sharing.

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    1. It does, doesn't it? Thanks for coming by, Karen.

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  8. All right. I'm in tears, although the story is truly inspirational. Thanks for giving us a piece of someone else's wonderful life.

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  9. Liz, Thank you for directing us here today. And, Stan, thank you for sharing your story. I want to live like Stan, like the finish line is in sight. Because it is, really, for all of us. I can't wait to get me some Used Car Wisdom.

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    1. I've read some of it. It's interesting stuff!

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  10. Beautiful post, Liz. Inspiring quotations and the story of an inspiring man. Thanks for sharing.

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    1. Thank you, Cat. He certainly is, isn't he?

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  11. I worked with Stan at Peabody and when he told me his story and about the book he is writing I cried. Not for Stan but because of his grace, humbleness, strength and his love for his family. This disease is not about him but about leaving a legacy. I love you Stan!

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