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)