In my mind today I am so happy. I want to share yesterday with you. Let’s look at a day in the ALS life. On Saturdays I stay in bed until early afternoon. I give my troops, my caregivers (Abbey and Andy) time to get up slowly. As soon as one of them wakes up, they check on me, remove my mask, and give me water. It’s always Ab first with this question, “Mom, did you squig last night?” They then bring me coffee periodically. They tag in and out checking on me. Around two in the afternoon, the ALS hustle begins. “Mom, did you squig while drinking your coffee?” asks Abbey. I replied, ”No, but I need to try to poop.” So they put me in my poop sling and up, up, and away I go. Remember when Dumbo the elephant was carried in a sling? That’s me hanging around waiting for some action. I got no satisfaction like Mick Jagger sings. I called out, “Ab, nothing but a squig.” Whilst I was hanging out, one of them got ready for church. They lowered me, cleaned me up, and transferred me to the wheelchair. I have a good hot shower every Friday thanks be to God, and I am still looking and feeling “Fresh, Froggy, and Light.” (a toodle aka jingle Ab and I made up long ago when she did my showers solo.) Then like a Nascar pit stop attachments are put on my scoot, teeth, hair, face meds applied, clothes on, and voila! I am ready to roll. Just around the corner I stop for a splash of water, oral meds, 10 cough assist puffs, and the loading of machines begins. It makes me think of Jackson Browne. They want me to stay a little bit longer. They check off my emergency list: plugs, hoses, machines, and my water. We started around 2 pm and a little after 4 pm we headed to Mass aka church. We crated Hugo, my Fuzzy Shug, and loaded into the TCB Big Black van, my Mystery Machine, by 4:15 pm. Miraculous, but we are still late! God understands. I am driving my scoot again after tweaking the new adjustments. Everything is in flux with ALS. Adapting almost daily depending on your progression. I have been blessed with brilliant, caring doctors (Butka, Warren, Bertorini, Tidwell), amazing husband, kids, sisters, brothers nieces, nephews, aunt, church family, friends, hospice team, and a Light in me that knows that this is just part of my journey.
We got to church and I was feeling so strong whipping my scoot around eager to get in the chapel to go to the feast of heaven and earth with my family. As I sped through the automatic handicapped doors, I said, “Thank you Barbara and Richard and Barry for these doors. Rest in Peace Richard and Barbara.” I heard Abbey behind me say, “Slow down!” It’s kinda fun being a 56 year old kid in a fast wheelchair. Our columbarium niche is right on my way in and I saw ours, Ken and Sarah. I am still living my dash, but the reality is raw. Death does indeed come for us all. My husband’s remains are there but I truly believe that he is there at the altar with all the angels, saints, and those who have gone before us marked with the sign of Christ. As my dependence on my caregivers increases, I missed several Celebration of Life masses. I noticed the ones that were left behind and my heart ached for them. I know they understand that they were there at the table with us (Barbara, Betty, Julie, Connie, Greg). I rolled up to the front row and was filled with so much joy. Front row tickets to the best show on earth. The first thing I noticed was Sonny. He is a child I have watched from an infant to the ripe old age of 8 years old. He made it. He has been going to the altar from infancy in his parents arm delivering the gifts for communion, then as a toddler, next usher, and now a bona-fide altar server. What joy! The sermon was on point and made you examine your heart and then the pinnacle of the service, communion. The tears always come because of the gratitude for an end to death through Love. I left so full of love and gratitude chatting and catching up with my God given family and my spiritual one, too.
Rolling home another one of our church family text my daughter and said, “The Pope is talking to your mom today.” I said, “What is she talking about?” Ab said, “He made a speech today about ALS.” I said, “Play it.” She put it on the van speakers. I was crying ugly by the end of it. He gets it. He understands how I feel. I am so much closer to God because it gives you “God Goggles” so you understand what is really important in this life. It is not about fortune and fame or acquisition of wealth. I’ve always thought the world has heart problems. “Don’t harden your hearts as they did at Meribah…” from Psalm 95:8. Have a heart for each other. Be a Good Samaritan. Thank you Glenna for sending the text.
On the van ride home, we were all filled with love, gratitude, and respect for one another and all of the Alley Alliance foot soldiers that are my “Simeons” helping me carry my ALS Cross. One of the best confessions I’ve ever had was after I confessed my grief of losing my physical life while admitting I contemplated ending my life and prayed for an end, death. The priest told me to look around at the people who are helping you to carry your cross. Go and pray for them. What a game changer. How selfish and weak in Faith I was at that point in my life. God flipped my script. I have a bigger purpose and a deeper understanding and more faith than ever.
After getting home and eating, I had a cough out that lasted until the wee hours of the morning. Cough assist with suction machine over and over until the “thunkers” (thick secretions) were out of my lungs. ”We consider it all joy” because we know what really matters is loving each other and doing the tasks laid before us with empathy, compassion and love. We are washing feet. I made it through the night. I know a lot of people don’t understand the Catholic faith but please watch this video and I hope it inspires you. Remember that song, “They will know we are Christians by our love?” Love Conquers All, even ALS.
Sarah Anderson Alley
Sal the Love Conquers All Gal
Quotes of the Day
“Love Conquers Death” Pope Leo XIV
“Did you squig?” The first question of every day by Abbey Alley Madeksho who is currently carrying my next grandson, Damian Leo Madeksho. He is currently the size of a papaya, mango, or a Furby!
Hebrews 12: 1 says Therefore, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us.
Remarks by Pope Leo XIV at the Les Turner ALS Foundation’s 2025 ALS Walk for Life
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