Invasion of the Body Parts

Invasion of the Body Parts

In my mind today I’m still scattered and all over the place. I’ve been Sal the Busiest Gal. I’m so glad my arms and thumbs are letting me write today. I’ve been so tired just trying to hold my head up and just drive this scoot. I’ve missed all of you!

I’m still reeling from a great Saturday on the downtown square raising awareness through the Autumn March for ALS. We survived all the glitches and managed to have a day of love and laughter. Not to mention being surrounded by so many kids. A teacher’s dream is to see healthy kids having fun, exercising, and inspiring all of us to join together and fight for better days for everyone especially them. They are the ones who will be the light bearers. We desperately need to teach them well. Sal the Show-tunes Gal is singing Crosby, Stills, & Nash in her mind as I type and reflect.

Back row students, you are going to love this. This morning I read about body parts that cause us to sin. Go ahead and get your snickers, snorts, and giggles out. What does this make us think of? Yes, back row, the horizontal boogie. Let’s move forward. I hear you thinking hands can steal, fists can hit, tongues can lie, even brains think evil thoughts. Sexual sins are bad, but our other body parts can do just as much or more damage. So as we strive to make the world a better place, let’s use all of our body parts for good. Yes, back row even those parts!

Let’s all put our thinking hats on today. Use your tongue to spread kind words. Find a soup kitchen and use your hands to serve. Unfurl your fists and fold them to pray for those suffering through cancer treatments, terminal diseases, financial burdens, depression, abuse, tragic accidents, addictions, and loneliness. Use your legs to run or walk in a benefit race. Use that brilliant mind to solve the little local problems around you. Look with your eyes and find those who need a kind gesture. Let’s not forget to open our big hearts and accept those around us warts and all. You see, the time is now. Stop holding back and join the fight to help good overcome evil. I am such a busy Gal. I’m going to roll on until I’m on the other side. ALS has taught me so much about real priorities in this earthly life. God is Good all the time even in our struggles. Heck, He’s the MVP if we just put him in the game. Try it!

Sarah Anderson Alley
Dedicated to my Alley Alliance

Quotes of the Day:

“Be kind, for everyone you meet is fighting a hard battle.”
Ian Maclauren

“The moment I have realized God sitting in the temple of every human body, the moment I stand in reverence before every human being and see God in him – that moment I am free from bondage, everything that binds vanishes, and I am free.”
Swami Vivekananda

“My strong belief is that God created human beings and therefore he knows about every aspect of the human body. So if I want to fix it, I just need to stay in harmony with Him.”
Ben Carson

“All parts of the human body get tired eventually – except the tongue.”
Konrad Adenauer

 

Disappointments

Disappointments

In my mind today, I’m thinking about missing my 30 year high school reunion. I have been pumped up for months about going and having a good time. As this weekend approached, so did a lot of other obligations and life happenings. I learned from a coach once not to ever make excuses, so I’m not. The stars did not align, so I missed it.

I was able to make it to the football game and enjoy seeing a few high school friends and former students. I drove by the after party but didn’t get out. My lungs were screaming and my body was craving my bed. I thought I would just go home and rest all day so I could join in the festivities Saturday. All I needed was my lungs suctioned and rest. This is what I kept telling and reassuring myself.

After realizing I was not going to make the dinner and dance, I became angry, sad, and depressed. I turned into Dismal Sal. Why? Reality stepped into my mind. With my fragile health, I may not see the next reunion. I was livid because ALS is trying to consume me and I’m fighting so hard. An outing with ALS takes a lot out of me, but even more so for my caregivers.

Fatigue hits me each day around five o’clock like a steam roller. No matter how much I rest or try to out last it, it comes over me like a heavy fog. I just want to be still covered in blankets using my bi-pap so I don’t struggle to breathe. When my family gathers at nine o’clock downstairs to put me in bed, a part of me is beginning to rejoice because of the stiffness coupled with little pains from pressure points on my bottom. Sorry back row, I’m just being literal and didn’t mean to give you a visual. I’m writing this so I can get it off my chest and move forward.

C’est la vie with ALS. DHS Class of 1987 I hope to see you all in 2027. I hope the stars will align. If they don’t, I’ll catch you on the flip side. I still have lots of memories and plan on making quite a few more. I quote The Bard of Avon, “Parting is such sweet sorrow that I shall say goodnight till it be morrow.”
Sarah Anderson Alley

Dedicated to the DHS Class of 1987
Thanks especially to Michelle, Amy, & Taylor for all of their organizational efforts

Quotes of the Day:
“It takes a certain amount of guts to go to your class reunions”
Dick Cavett

“I was the guy who was friends with everybody. Yes, I had my core group of friends, but I wasn’t part of a clique that excluded people. I hope they thought I was a nice guy. I tried to be just friendly and outgoing. I was class president. I’m supposed to run my class reunion in 2013.”
Austin Stowell

“”I am the type of guy that has always been the same all of my life. My classmates at our class reunion always say the same thing. They could not believe that, being a world artist, I still seem like I was when we were at school together.”
Percy Sledge

Longer

Longer

In my mind today I’m exhausted. I’ve been jetting all over in my wheelchair since Sunday. I may be Sal the ALS Gal but I’m not giving in until I burn completely out. I hear my loved ones and even the back row saying, “Slow down Ms. Alley. You look so tired. Your breathing is labored. You’re swelling all over. We need you here longer.” Yes, longer is what we want especially in dire situations.

Sunday was mass, meal with the family, watching ball games, and reading. Monday was meetings of the Tween bookclub and race organizers gathering to tweak the Autumn March for ALS. Tuesday was soliciting money and prizes for the Autumn March for ALS 2017. Wednesday was visiting the ALS Clinic and my sweet great nephew at Le Bonheur who is fighting for longer, too. So, today I really need to rest and try to get my fluid levels in check. It gives me a chance to read, reflect, and write. And this feeds my soul and gives me life. Longer.

Reading about prayers this morning and how some are answered in the way we want and when other prayers are answered differently, we feel jilted. Yesterday at the ALS Clinic I heard the lock click and open slightly. People who know me and who have loved ones affected by ALS have been pleading for help with this horrible disease have an option to help their loved ones. It’s the first drug offered in 20 years. The neurologist yesterday asked would I consider trying a new infusion drug that has become available FDA approved. It is Radicava. It has shown to give some improvements in mobility and slowed the progression of ability loss. If you’ve seen me dining out with my family or friends, I know you’ve noticed eating is very hard. My husband and friends are starting to help and feed me. My arms are becoming too atrophied and very tired to feed myself. As an example, this drug could slightly could improve my strength and slow the deterioration. My weakened diaphragm and pulmonary function can be improved and sustained. It’s an answered prayer or a door opened according to my readings today. My children are young and I know they need me here. Longer.

After receiving this news, I signed or scratched my name on the paperwork. We headed across town to see my great nephew, niece, and sister. When I saw Kyler lying there broken, tears emerged. I would have given the rest of my vitality and allow him to jump up and start asking his crazy questions, jump on my wheelchair wanting to go on an adventure, roll in the yard with his dogs, or start a burn pile with his Peepaw Butch. He laid still breathing. I only wanted to hold his hand and pray.

The warmth from his little fingers gave me hope of better days. My eyes closed as I prayed searching for the Holy Spirit to fill us. I’m being bold and I’m asking for that high spirited, handsome young man to wake up and say, “Momma, Nanna what’s going on? I’m ready to go play. Hey Nonna, am I going be getting off the bus at your house this week? Dad, thanks for being here. Kenny, let’s go fishing! Misty, I’m ready to see Lex and play remote control cars with Uncle Josh and the boys. Let me hold Avy Lynn and play with Audrey Belle and Andi Kate today. Can I PLEEEESE stay with Nanna tonight? Momma, can you rock me?” Yes, I know prayers can be answered. I know Kyler is strong and a fighter. I believe in miracles.

As one prayer is being answered for Sal the ALS Gal, I’m not giving up on our Miracle for Kyler. He’s stable but critical. The journey to complete recovery may be long or short. There are so, so many on deathbeds, have terminal illnesses or chronic diseases, and mental illnesses from schizophrenia to addictions that need to be here longer for their loved ones. Longer so they can love them and seek a miracle. Don’t be shy. Seek and you can find a miracle. Ask and the door can be opened. Pray for longer.
Sarah Anderson Alley

Dedicated to the Wesley Neurology Clinic, Kyler Doolin, and all of us praying for longer.

Quotes of the Day:
Luke 11:5-13
Jesus said to his disciples: “Suppose one of you has a friend to whom he goes at midnight and says, ‘Friend, lend me three loaves of bread, for a friend of mine has arrived at my house from a journey and I have nothing to offer him,’ and he says in reply from within, ‘Do not bother me; the door has already been locked and my children and I are already in bed. I cannot get up to give you anything.’ I tell you, if he does not get up to give him the loaves because of their friendship, he will get up to give him whatever he needs because of his persistence.
“And I tell you, ask and you will receive; seek and you will find; knock and the door will be opened to you. For everyone who asks, receives; and the one who seeks, finds; and to the one who knocks, the door will be opened. What father among you would hand his son a snake when he asks for a fish? Or hand him a scorpion when he asks for an egg? If you then, who are wicked, know how to give good gifts to your children, how much more will the Father in heaven give the Holy Spirit to those who ask him?”

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” Albert Einstein

“Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.”
C.S. Lewis

 

 

Harvest Time

Harvest Time

In my mind today, I’m thinking about harvest time. It’s that time of year. The days are shorter. The morning are cooler. There’s a hint of coolness in the air. Farmer’s harvest the fruit from their fields. It’s a time for being thankful.

While reading this morning, a writer compared us to being God’s fruit for his harvest. It’s hard when we want to dictate the best time to be harvested and taken on our eternal adventure. Most agree a ripe old age is the best time. Looking at the world around me, I see that that’s not how things work out. Mass killings, natural disasters, and mere tragic accidents fill our lives. The harvest isn’t only the old but sadly so many young are reaped as well hence the Grim reaper.

How can we make peace with our life clock? We can become worriers, germaphobes, hypochondriacs, or dooms day preppers. How many lives do we save or years do we add? That clock within us still ticks away.

A dear friend dropped by today to help with a gift for my niece and great nephew. We discussed this crazy life of uncertainties. What we came up with is this: our main purpose on earth is to love and care for each other in any way every single day we get. Simple. Live to serve others sounds so foreign when you look at what a mess the world is in. We can be the game-changers if we only will take up our crosses for spreading hope and love. Yes, our life clocks are ticking. The clamor of your good deeds can drown out the ticking as your time of harvest draws nigh.

Sarah Anderson Alley

Dedicated to Autumn

Quotes of the Day:

Autumn is a second spring when every leaf is a flower.
Albert Camus

When autumn darkness falls, what we will remember are the small acts of kindness: a cake, a hug, an invitation to talk, and every single rose. These are all expressions of a nation coming together and caring about its people.
Jens Stoltenberg

My sorrow, when she’s here with me, thinks these dark days of autumn rain are beautiful as days can be; she loves the bare, the withered tree; she walks the sodden pasture lane.
Robert Frost

 

The First

The First

 

In my mind today, I’m thinking about my great nephew. His grandmother is my amazing sister, Judy. She has a heart so big and I thank God for her every single day. If there’s an anchor in our family, it’s her. When she called yesterday hysterical and pleading for prayers, my heart literally cracked. Kyler, her grandson, had a tragic accident on a 4-wheeler. He was being air-lifted for head trauma. I’ve been praying along with many since her call.

Kyler was the first of my great-grands to accept me in my chair. It was like her never saw it. He made me feel accepted and loved even though I could no longer join in physical activities with the kiddos at our family get togethers. He would hop on my scoot with me and away we would go. In almost every family picture, he is in my lap. When I go to his ball games he always lights up when I roll in. Kyler is just special. We all love him very much.

Today as I would read and pray, my focus is just with Kyler, my niece Tiffany, and my sister Judy. I’m asking God for a miracle of complete healing. Please keep our family in your prayers. Show tunes Sal is finding it tough to sing today. Life is so very fragile, but God is so much stronger. I truly believe in the Lord the Giver of life. He loved us first.

Sarah Anderson Alley

Dedicated to my Great nephew Kyler

Quotes of the Day:

“There are no greater treasures than the highest human qualities such as compassion, courage and hope. Not even tragic accident or disaster can destroy such treasures of the heart.”
Daisaku Ikeda

“Hope is being able to see that there is light despite all of the darkness.”
Desmond Tutu

“To love means loving the unlovable. To forgive means pardoning the unpardonable. Faith means believing the unbelievable. Hope means hoping when everything seems hopeless.”
Gilbert K. Chesterton

 

I Won’t Back Down

I Won’t Back Down!

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In my mind today, I’m thinking about music and savage beasts. Music is such an endowment to humans. My husband is such a connoisseur of music. It’s one of the reasons I fell in love with him. He instilled this passion in each of our kids. This morning before he went on his way to work he peeked into the bedroom and said, “Tom Petty was a big part of our lives. We listened to a lot of him through our years together.” It’s true. We saw him in concert several times. We own all of his albums from his early years to present. Yes, death comes for us all. All morning his tunes have been dancing in my mind. Such a beautiful, musical mind starting his next adventure on the b-side of life.

Music has always been special in our home. We love all kinds of music from home-tapers to classical. We’ve raised our kids to having days off by the pool listening to music. Many days at home with no tv and just music permeating the air. Watching musical documentaries together is still a treat. You can say loving music is part of the Alley way.

Music can truly influence your state of mind. It can invoke an array of moods: enraged, melancholy, optimistic, forlorn, electrified, jovial, lucky, tenderness, and invincible. I associate songs with so much. I used it to teach in my classroom. I used it to explain complex ideas and show the mood of the era of history I was teaching. One of my favorite units was teaching music through the decades. My students were amazed and became fans of the classics. One of my former classmates said, “Sarah, you turned my daughter on to the Beatles.” What a compliment! Music is used to make connections in my brain with so many of life’s moments from first loves to last breaths. I guess the Alleys are a bunch of music nerds and I helped to create a few, too.

Ah, thank God for music and talented musicians. They do make life more enjoyable and endurable.
Ironically as Tom Petty was leaving the world many others did too at the concert shooting in Las Vegas. Senseless acts of violence enrage me. America where is your unity? We need to find it quick, like yesterday. Violence is a savage beast. So what can we do to soothe it? When I got up this morning, the song “I Won’t Back Down” was in my mind and I was singing it. I usually wake with a song in my mind and on my lips. With yesterday’s events, it was so fitting. Americans we can’t back down from doing what’s right. We can’t let fear rule our hearts. We have one life and one voice. Let’s not waste them. We have to continue to promote equality, justice, hope, and love in the face of evil. Join me in singing today. “I Won’t Back Down.”

Sarah Anderson Alley

Dedicated to Tom Petty and America

Quotes of the Day:

“I Won’t Back Down”

Well I won’t back down, no I won’t back down
You could stand me up at the gates of hell
But I won’t back down

Gonna stand my ground, won’t be turned around
And I’ll keep this world from draggin’ me down
Gonna stand my ground and I won’t back down

[Chorus:]
Hey baby, there ain’t no easy way out
Hey I will stand my ground
And I won’t back down

Well I know what’s right, I got just one life
In a world that keeps on pushin’ me around
But I’ll stand my ground and I won’t back down

Hey baby there ain’t no easy way out
Hey I will stand my ground
And I won’t back down
No, I won’t back down

Tom Petty and the Heartbreakers

“Music is probably the only real magic I have encountered in my life. There’s not some trick involved with it. It’s pure and it’s real. It moves, it heals, it communicates and does all these incredible things.”

“Most things I worry about never happen anyway.”
Tom Petty

R.I.P.

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