Most of you who know me know I am living with ALS and have been blessed with a slow progression. It has been 14 years of deterioration of my body. I have transformed from a 6 foot tall athletic woman to a 4 foot Humpty Dumpty in a wheelchair. I imagine myself as an ogre like Shrek’s wife Fiona. My body is choosing the ogre form permanently, but it is totally okay. I’m making lemonade and so grateful for the most precious commodity in life, time. Regardless of ALS, I am embracing this ogre form and life. God is so good all the time!
I’ve decided to write about the unbelievably crazy and hilarious ( yes funny ) parts of my life living with this disease. My life has been 14 years on a roller coaster from upside-down, highs and lows to neck breaking curves and bumps ( literally in the back of my handicapped van) and I want to share with you so we can laugh and realize I am still me. ALS doesn’t take who we are.
Currently my ADHD is raging. My sweet level-headed daughter is my primary caregiver. Please pray for her because I am a lot to deal with, not including the ALS quadriplegic part. Here’s my life at the moment: painting with my mouth, trying to publish a book, organizing the 10th Annual Autumn March for ALS, helping my favorite nonprofit, doing 2 Bible studies, meeting with women once a week, and church on Saturday AND Sunday. Thanks be God for Hospice and their volunteers, my sitter Lisa, and dedicated friends and siblings to “handle” the ogre in the wheelchair. She and I live together with her 7 month old son in an apartment (across the street from a nursing home as an incentive for me to behave) just 7 minutes from my son. They are a great tag team.
On my most recent trip to the Semmes Murphy ALS clinic 2 hours away in Memphis, we made a fun day of it. We had a fun clinic visit, went to Trader Joe’s, (emptied my catheter bag discreetly in a plant island in the parking lot) and met her best friend from college at Soul Fish for supper. As we were living it up my daughter said, “We need to have more fun together. Leanne Morgan is going to be in Memphis at the Orpheum in a few weeks. We love her. Let’s go!” That’s all I needed to hear! I said, “Get ‘em!”
We had already watched everything of hers on Netflix and were desperately waiting for season 2 of her sitcom. We promised ourselves after her live performance we would make this next season last, but who are we kidding? We will pull an all night binge!
The big day came. We were pumped up! I wanted to be cute and wear a black dress with a coordinating top and my black thigh high knitted socks. Mistake! My daughter broke a sweat just getting me ready. The humidity in West Tennessee is no joke. She changed into a cute t-shirt and skort. She decided cool over fancy, but not me.
My son and I had noticed about a week ago that the air conditioning in the van was not cooling much. Heedless of all caution as we constantly are, we took off flying up Hwy 51 while her sweet baby had some DaDa time. The thermostat beside my chair read 99 degrees, and it was blinking! I thought surely it would go down some.
We got to the McDonald’s ten minutes up the road, and still, blinking red numbers reading 99.
Forty minutes down the road getting my neck broke on the Port of Cates Landing exit, I feel a sheen of sweat cover my body in this black van in this double layered black outfit I am suddenly regretting choosing. We stopped for gas and my daughter’s face was flushed tomato red and her cute wisps of hair were dripping sweat. She looked back at me and ripped my blanket off and I breathed a sigh of relief. (ALS always makes you feel so cold so I always have a blanket.) The windows were down and the thermostat was still at 99. My daughter peeled off her cute t-shirt that said “Today I Choose Peace (check back tomorrow)” which was a joke! She was stripped down to her sports bra driving like a bat outta h€ll! As my Aunt Linda would say, “It was like walking through h€ll soaked in gasoline.”
We were about 30 minutes from the venue, running late of course, feeling like boiled lobsters in a pot and looking like it, too. We were so red, especially our faces. The humidity was insane, and I felt sweat rolling off the tops of my feet. I had swamp feet and other delicate areas I can’t mention. Finally, we parked overlooking the mighty Mississippi River a few blocks away, praying for a breeze and a stray afternoon thunderstorm.
We opened the doors of the van and the air hit every crack and crevice of my sweat soaked body. My daughter was flapping her arms like she was doing the chicken dance. It was 3:58 pm. We had 2 minutes to get inside and we were moving. We were at doors at 4:02 looking like we had just ran the St. Jude Marathon, and we felt that wonderful air conditioning! I was dry as a chip! I was anticipating my water bottle when I saw the usher make my daughter pour that life-giving resource right out into a fancy ornate water fountain. I gasped and wilted into my wheelchair. “Bug, I had to. He thought it was full of vodka, but Honey I think we both need a stiff drink,” she told me, bugging her eyes like she wanted to kill that man.
We were escorted to both sides and finally found our accessible seats in the orchestra pit. Can I get an Amen? It was a tight fit and 4:20! We made it after almost swiping a bar cart and a few people, but I was dehydrated and weary. Leeanne didn’t disappoint. She was on top of her game with new material. We were pumped up and laughing so hard. All the hooting and hollering was glorious, and then Leeanne stopped around 5 o’clock and asked the audience, “Was that thunder?”
My daughter and I looked at each other then up to the ceiling and said, “Thank you Lord.” We had been praying for a thunderstorm the whole way to cool off the concrete jungle. I also sent up a little prayer for God to help me out of there by parting the clouds so I wouldn’t short out my ventilator and wheelchair because electricity and water don’t jeehaw. (That is Tennessean for don’t get along or mix. I’m sure Leeanne knows.) Those Orpheum people “stood on business” and kept me safe and dry while Abbey hiked those few blocks alone in the rain to the van. (Thank you to Rhodes for training her for this moment! She pulled around and I swear the Rocky theme started playing!) It happened, and we drank at least a gallon of water on the way home.
The IHOP stop on the way home was another “Tale from the Crip, me!” whew! We stopped in Millington to avoid the handicap inaccessible nightmare of downtown Memphis and the Sam Cooper neck-breaking bumps, and it backfired. More later but please say a prayer for our sweet waitress, Elizabeth.
Sarah Anderson Alley
Sal the I love Leeanne Morgan Gal
Quote of the Day:
I hope you laugh because it is some of God’s best medicine. Sal
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