Give It To Me - My ALS Journey

            On a cool, crisp, autumn afternoon in 2003, I entered the stadium where my son, Chris, would be playing football with his high school team in a few short hours. I was there to start cooking the hamburgers that would be sold by the Fort Mill High School Booster club. All was right with the world. At 46 I had everything any man could want  - a beautiful wife, two healthy sons, a good job, and plenty of time to enjoy my favorite pastime: football.
            With a row of burgers sizzling on the grill, I poured myself a cup of Coke and leaned into the countertop to enjoy a short break. Within minutes the perpetual smile on my face slid into a frown as I watched my right hand suddenly begin to shake – violently! With great effort I was able to transfer the cup I held to the countertop. Now I closely examined my hand. The shaking had stopped, but what happened?  
            Other booster club members had witnessed my problem and expressed concern. I’d call my family doctor on Monday. The thumb on that hand had not been working right recently. Maybe these two things were connected. Probably I was joining the ranks of some of my friends: back problems, knee problems - all natural experiences of middle-aged people.
            At the doctor’s office, I endured a full round of tests. Within days I went back for the results: everything was normal. Now, my family doctor sent me to a neurologist to be sure I was getting everything checked out. And under the scrutiny of the neurologist, I was given even more tests. All the while, I didn’t worry. I felt great, and life was good. But on the day of my return visit, this doctor didn’t give me an “everything normal” diagnosis. In fact, he didn’t give me any diagnosis. Instead he asked me a question: “Mr. Jackson, are you married?” When I answered that I was, he asked me to return later with my wife. On the way home, I pondered this odd request from the neurologist, but I sloughed it off. Probably I was going to need some minor surgery and my wife would have to be in attendance as the doctor went over the home care I would require.
            Driving back to the doctor’s office two weeks later, the day before Thanksgiving, my mind raced with what seemed to be important details, schedules for work, things to get done at home with family coming for the holiday. But reigning most dominant in my thoughts was what had happened the Saturday before, the devastating defeat the University of South Carolina Gamecocks had suffered at the hands of the Clemson Tigers. An avid Gamecock fan, I lived and breathed only to watch that rival game played every November. This year, the final crushing score of 63 – 17 haunted my waking moments and revisited nightly in my sleep as I tried to accept the Gamecock’s defeat.
            I took thoughts of the game into the doctor’s office with me- mentally dealing with the challenge of sports; and only moments later, the neurologist gave me the challenge of my lifetime. In the consultation room with Cindy and me, the doctor was brief and to the point. “Mr. Jackson, I’m sorry to tell you that you have ALS.” On hearing those words my world shattered, leaving only shards of what had been. I didn’t know a lot about ALS, but I knew it was fatal; I knew I’d just been given a death sentence, and now my brain scrambled.  There wasn’t a place, a compartment in my being where I could put the words “terminal illness” and still see things ever returning to “normal.”
            The doctor continued to talk while I groped with this news. He went on to explain ALS while Cindy reached over, took my hand and held it tightly as she, too, tried to understand that which we didn’t want to understand. “There’s really no treatment for ALS,” the doctor said, painting a picture of the future that was more frightening by the second. “We prescribe the drug Rilutek, but I’m sorry to say, if it works it will only add up to three months to your life.”
            Driving home from the doctor’s office, weighted down by my diagnosis, I realized there was a different Larry Jackson driving my car. Instead of football, my thoughts were filled with the endless “nevers” that would become my new reality. Would I never live to see my boys reach adulthood, never be present at their weddings, never know my grandchildren? Upon reaching the house, I did the worst thing I could have done: I immediately sat in front of my computer and googled ALS.
            Nothing positive was in the articles I read, only doom and gloom. Life expectancy for me was three to five years: I could expect to live to be of 49 at worst and 51 at best.  I could expect to lose my muscular abilities as time progressed: the ability to walk, to talk, to care for myself in even the simplest activities – brushing teeth, shaving, hugging my family. It would all be gone with time. I found myself slipping into the deepest, darkest valley imaginable.
            And in this valley, my daily routines changed. I continued to work, but at home I took on different practices. At night, instead of sitting in front of the television, I started praying incessantly. Evenings would find me walking in my neighborhood and talking to God. I took the symptoms of my illness that would limit me the most, and I prayed aloud to God to spare me of these symptoms. I asked him not to take my legs, not to take my voice, and to spare me of the choking sensation so many ALS patients endure.
            My life became one long, constant prayer, and yet I struggled. About a week later, I awoke with the knowledge that I had to DO something. I talked to Cindy, and thankfully saw understanding in her eyes. “I’ve got it pretty rough,” I said to her. “I’ve got to get away with God. I’m going to the beach.” And then with complete conviction on her part, she helped me pack and watched me drive away.
            I went to Myrtle Beach, where we as a family had spent many joyful vacations. In the nearly four-hour drive, I talked to God like I’d talk to a friend, to a confidant, just as I had in my evening walks at home. Among my thoughts now was the gratitude I felt I owed my parents for the times they made me go to church. All that I’d learned in church became a light unto my path. Faith in God became my driving force.  At the beach, stripped of everything I once considered my security, I entered a barren hotel room with God, my only companion.
            I entered this room a disheveled, distraught semblance of a man. Inside those four walls I allowed myself a pity party. Behind the closed door, for two days I prayed non-stop, pouring out my sorrow at being dealt such a fate, begging for God’s help. And finally, in the second day of my vigil, I experienced God’s grace, though I didn’t recognize it at first. As I sat deep in prayer, I suddenly felt a tingling going up and down my back, and then it spread throughout my whole body. I remember being completely still as I wondered at what was taking place. And then, from within my soul I heard a voice, and it spoke for me a very simple message: “Give it to me.”
            With this encouragement, I began praying again, praising God’s name, and then again the tingling sensation returned, and once again that ethereal voice spoke to me: “Give it to me.”
            Now lit with what was surely a message from God, I returned to my fervent prayers, and then, as if God wanted me to make no mistake, for the third time, my body tingled and I was awash with the spirit of God. This time He delivered His great command a little sterner: “Give it to me.” And in this act, my spirit and the spirit of God became one.
            My hotel room miracle happened eleven years ago. I should be dead by now, but instead my family puts my special wheelchair into the van along with my three grandchildren and we go to football games, to the beach, to gatherings of friends where we share food that I have never choked on.  I take every opportunity to use my voice to tell my story, and every day, holding Cindy’s hand, I walk to my wheelchair,
            I’m glad ALS came into my life; through this disease I was led to find the peace of God, and I have lived to experience the purest of joys. Blessed be His name forever more.

- Larry Jackson
This article was featured in the ________ issue of Guidepost in September of 2014.  


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