The Worst

The Worst

In my mind and heart today, I’m feeling warm and fuzzy. I was able to spend the whole day with my sweet, strong, loving mother. My Aunt, her loving sister Linda, brought her over, and we had such a wonderful day.

Three years ago my condition worsened greatly. My diaphragm was failing, and I was close to death. I made it through it, but my mother’s mind began to slip. Every time we were together I could literally see her heart break. She couldn’t bear to see her youngest in such a weakened physical state. I was her tomboy that loved the outdoors and every sport imaginable. I chuckle when she tells me Sarah Anne you exercised too much. Ironically, she had lost her baby sister to the same horrible disease. My aunt was only 43 years old. This was such a hard time for our family especially for those sisters and her only son.

As I progress, so does my mom which is the worst. It makes our times together fewer. The logistics for me are hard but as she progresses she becomes less compliant to go on adventures and outings. I’m busily trying to live and advocate for education, social justice, love, and a cure for ALS until I take my last breath which ties up my days. I keep hearing Willie Nelson in my head “Still is still moving to me” as I keep rolling. I know my mom wants me to fight on.

Alzheimer’s is the worst. She is confused easily and her short term memory is shot. When I’m with her, we revisit the past. It’s always full of knee-slapping laughter and occasionally tears. It’s never a disappointment even if we laugh at the same story 20 times. I’m still so blessed by her love and earthly presence. Once after all of her fuzzy-headedness(this is one of her descriptions) started, she told my sister “Judy, I think God is helping me forget so I can deal with Sarah being so sick.” I think she may be on to something.

My mom and I both have bumpy journeys ahead. ALS and Alzheimer’s are really two of the worst fates for any human to bear. I always remind my healthy brain to focus on each minute while trying to prepare for the worst. This has always been my modus operandi with ALS and my advice for others who share my bumpy path. While you are able do these things if you can: handicap your bathroom, find equipment in loan closets, register with the local ALS Chapter, educate your friends and family, and then enjoy each moment one day at a time. The storm is coming and you will encounter many break-downs as you look into the future of living with ALS. It’s very ugly, hard, and expensive. But, I know someone will rather you be here even if it is excruciating at times. Just like my mom keeps reminding me when we talk, “Young lady, you cannot go before me. You are my baby.” I know momma. I know. I’m fighting very hard to stay.
Sarah Anderson Alley

Dedicated to all those who live and love through Alzheimer’s.

Quotes of the Day:
“If you learn to listen for clues as to how I feel instead of what I say, you will be able to  understand me much better.”
— Mara Botonis

“We remember their love when they can no longer remember.”
— Unknown

“It occurred to me that at one point it was like I had two diseases — one was Alzheimer’s, and the other was knowing I had Alzheimer’s.”
— Terry Pratchett

DNA

 

DNA

In my mind today, I’m thinking about genetics. We still know very little about the secret of how other living beings are created. We have found some very substantial discoveries in the DNA code but not enough to create a perfect, living being with a soul. The miracle of conception and birth is just that, a miracle.

I remember teaching genetics in science. We had so much fun with punnet squares, hereditary traits, and building DNA models with Twizzlers, colored marshmallows, and toothpicks. The only person that grumbled was Mr. Hobert the janitor because of marshmallows being stomped into the tile floors. Sorry Mr. Hobert! Learning sometimes gets messy. And boy, did we ever learn! The secrets of our chromosomes are definitely intriguing.

I remember having a simple conversation with my brother once and it really stuck with me. You have to understand my brother to get the impact of his comment. My brother is quiet, gentle, kind, intelligent, introspective, and a man of few words. Lots of things about him are oxymorons like he’s small but strong as an ox. He’s very intuitive, but he rarely interjects his opinion. He is to me a Renaissance man crossed with a mountain man. He is truly an enigma. I was admiring his handiwork building flowerbeds for me. He said, “Say, we are all creators because we are made in God’s image.” Just like that he showed amazing humility and comprehension of gifts and talents that are sometimes unexplainable. I thank God for my God gifted brother and his wonderful children.

So, this morning as I’m reading I’m thinking about DNA. Yes, we are such wonderful creatures. We are not only creators but also made to give light, hope, and LOVE. We have within our DNA the ability to be creators of good or evil, vengeance or forgiveness, and love not hate. We need to remember to think before we act and listen twice as much as we speak. (That’s why we have two ears and one mouth back row!) This is a challenge for me because I love to talk.

Miraculously, ALS hasn’t taken my upper motor neurons yet so students I apologize. I will continue to run my mouth, a lot. So let me say one more thing about DNA, “Embrace your DNA. There is no one else like you nor will there every be again. You my students are masterpieces from the Master. Let’s all treat us with that LOVE used to create us.”
Ms. Alley

Dedicated to my brother FWA
Quotes of the Day:
“The spiral in a snail’s shell is the same mathematically as the spiral in the Milky Way galaxy, and it’s also the same mathematically as the spirals in our DNA. It’s the same ratio that you’ll find in very basic music that transcends cultures all over the world.”
Joseph Gordon-Levitt

“With genetic engineering, we will be able to increase the complexity of our DNA, and improve the human race. But it will be a slow process, because one will have to wait about 18 years to see the effect of changes to the genetic code.”
Stephen Hawking

“Genes are like the story, and DNA is the language that the story is written in.”
Sam Kean