Bills! Yay! Not.

Bill Day! Yay! Not.

 

 

In my mind today I’m juggling bills. Isn’t that fun? Welcome to the adult world. I try not to let bills get to me but when I open my online account it looks like money is literally disappearing. I know I’m preaching to the choir. That’s life.

Yesterday was one of those days. I almost choked to death in the local Applebee’s. Not to mention it happened in front of lots of former students and friends. It’s part of my life now. We had to rush home and I texted Ben, “I’m dying. Get the machines ready. Otw!” My son Ben, who takes care of me, said, “Mom, I could tell it was about to happen before you left for church.” Endearing but sad.

On the way back home struggling not to literally drown on phlegm, I started thinking of how I’m getting tied more tightly to my machines. Oddly I thought of trips I had taken in an ambulatory body. I remembered our miracle New York adventure last winter. The dream state of adventures calmed me as we jetted home in the “Mystery Machine.”

My will to live took a huge blow yesterday. What a way to die? I know we can’t choose. Well Sal the ALS Gal, what are you going to do about it? After being wiped out and exhausted, I started my routine. What did I find? Matthew 11:28 “Come to me all who all are weary and burdened, and I will give you rest.” So, I’m putting on my big girl mumu dress and letting all of my self-pity, bad thoughts, and worries go while I pray. Please pray with me today. Embrace the sun. Enjoy the brisk fall weather.
Sal the ALS Gal lives to roll another day.

Sarah Anderson Alley

Quotes of the Day:
“We can be tired, weary and emotionally distraught, but after spending time alone with God, we find that He injects into our bodies energy, power and strength.”
Charles Stanley

“Oh, I am very weary, Though tears no longer flow; My eyes are tired of weeping, My heart is sick of woe.”
Anne Bronte

“O Death, rock me asleep, bring me to quiet rest, let pass my weary guiltless ghost out of my careful breast.”
Anne Boleyn

Early Mornings

Early Mornings

In my mind today, I’m thinking about early mornings. Recently my daughter has been having to arrive at school by 7 am. She’s a junior and has so many responsibilities from Student Council, Model U.N., Journalism, and choir. She’s busy, busy. I’m so very proud of her.

When she has early mornings, the whole house has to wake up with her. My husband is the Ring Leader of our Alley circus. He gets the lift and places me in my chair. Then we roll into the kitchen for medicines, coffee, and breakfast. We talk while Abbey scurries around. Ben, my middle son, then puts me on my “throne.” He and Ken then tag team to clean me up and put me back together in my chair. Sounds like “Humpty Dumpty” but my brokenness can’t be fixed. We then say our goodbyes and I settle into my little nook to read, pray, reflect, and write barring any choking spells.

All in all, we handle our mornings pretty gracefully. I’m so blessed to have a family that wants me here. Sometimes I feel selfish and want it to end so they can be more “normal.” When I become Dismal Sal, they reassure me that they want me here. Once I said, “It’s time for me to fly.” And now when I become somber they say, “Dad, she’s dismal! She’s trying to fly again!” The whole living with ALS is so comedic at times we laugh until we cry. You have to laugh.

The other day I received a wonderful card from an amazing friend. It said, “If I could wave a magic wand…” and it was so endearing. Yes, if we could wave a magic wand a lot of hurts would vanish for sure. Struggles in illnesses would be non-existent. Then I thought, where would our inspiration and gumption to carry on despite donning a bald head from battling cancer or twisting bodies from muscular dystrophies? At our lowest moments, we impact others on an inexplicable level. It propels the human race to be kinder, more understanding, and love more deeply. Our suffering is used for a greater purpose. Many of us battling with diseases and disabilities, embrace our cross and bear it for the good of mankind. Blessings then flow abundantly. Yes, it’s hard living in a broken body but it feels so good to know God uses it for the greater good. That’s all that really matters in the end.

Sarah Anderson Alley

Dedicated to Delores, LJ, Robert, Tracy, Callie, Peggy, Butch S., Gale, and all those who are inspirations to mankind.

Quotes of the Day:

“Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.”
Helen Keller

“To live is to suffer, to survive is to find some meaning in the suffering.”
Friedrich Nietzsche

“Our human compassion binds us the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future.”
Nelson Mandela

 

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