We Carried the Mat

It was a beautiful day in our community just north of Dayton, Ohio. As we strolled the Miami Shores Golf Course, watching our son, Luke, play a round for Troy Christian High School, my husband, Jay, began to complain of a persistent twinge in his right hip. No big deal, we thought. After all, Jay was fifty-four, a prime age for a few arthritis symptoms to kick in. On our frequent walks together, we had often teased each other about the minor maladies that go hand in hand with the aging process.But one day shortly thereafter, Jay developed “foot drop”—dragging his right foot and tripping frequently. I worried, but Jay made light of it. “I’m even clumsier than usual!” he quipped.When severe muscle cramps ensued, I knew Jay was in serious trouble. That is how our two-and-a-half-year journey with ALS began. The disease takes one completely captive before it sets the mind, body, and spirit free. As a practicing physical therapist, I was initially able to apply my clinical skills and training to help Jay cope with his symptoms as they appeared. Long before we received a confirmed medical diagnosis, I had become my husband’s caregiver. His welfare became my sole mission and purpose. During our last great adventure together, our roles dramatically and suddenly reversed. You see, throughout the course of our two decades as husband and wife, Jay had always been the leader, the comforter, the “cheerer-upper” in our relationship. He was the one who taught me how to let go of my worries, laugh loud and long, and live life abundantly. He took care of me in a way no one ever had or ever will. In his final months, I had the combined joy and agony of bolstering his emotional welfare and endurance, while providing physical and medical care for him. Every waking moment, I summoned all my strength to be present for him, to buy him a little extra time, to hold onto him for one more day, and finally, to say good-bye.When I met and married him, Jay had a military background in the air force and served a year in Vietnam, before he went to work with Piedmont Airlines and later, US Air. Throughout his adult life, he embodied the spirit and character of a good and faithful soldier. He intuitively knew how to deal with adversity. On his worst days, Jay’s eyes continued to sparkle with life. In fact, during those trying times, the clarity of God’s purpose for Jay’s life began to sharpen. He is recorded on video as saying, “If God heals me, wow! I can’t imagine what a testimony I will have … and I’ll never shut up! But if God decides that I should go Home to be with Him, the best thing I can do between now and that day is to continue to do His will, not my own.” In truth, Jay delighted everyone with his sense of humor. He had an innate ability to weave confidence and worth into the hearts of others, including mine. In private moments, when no one else was present, I witnessed Jay’s struggle with humiliation and depression, as he learned to cope with his terminal condition. Ultimately, however, his spirit found a way to soar high above the indignities of the disease. Even after he could no longer move and had trouble speaking, Jay always managed to exhort friends and strangers alike.Day in and day out, week by week, month by month … breath by breath. For two-and-a-half years, we waged war with an enemy that never plays fair. The disease crept upon him like a thief and eventually robbed him of his ability to move, speak, swallow, and breathe. Eldon “Jay” Jordan, whose quick wit and colorful persona had charmed everyone he had ever met, drew his last breath on June 27, 2007, with our dog, Tipper, guarding him closely in her position on his bed. When he had drawn his last breath, Tipper sighed, lay across his body, and went to sleep. She knew his struggle was over, and her job was finished.I felt finished, too. During those two-and-a-half years, the mirror had gradually begun to reflect an older, wearier me. I heard the exhaustion in my voice and noticed it in my posture. At times, I felt defeated, depleted, destroyed. On that June morning at his graveside, I wondered whether I was burying a piece of myself with Jay. I remember the moment I had prayed out of sheer desperation for God’s help. It was on a day we were being bounced from one doctor’s office to another in search of a diagnosis, hoping it wasn’t ALS. I wondered if God was listening to my prayers, or whether they were bouncing off the ceiling of those medical buildings. So I asked Him for a specific sign—ladybugs—to assure me He was listening and would answer.God was listening all right, because over the course of the next two years, He sent ladybugs. Lots of ladybugs! They not only came in the “bug” form to remind me on occasion that God was intimately aware of what we faced, but they also appeared in “people” form! In a variety of ways and as special needs arose, people from our community and church walked with us during the toughest journey of our lives. Friends and strangers alike, who had heard of our plight, streamed in and out of our home to help us—sometimes at all hours of the day and night. With them came smiles, encouragement, hope, faith, prayers, and perseverance. Ladybugs to the rescue!The Lord hears His people when they call to Him for help.He rescues them from all their troubles.The Lord is close to the brokenhearted;He rescues those who are crushed in spirit.—Psalm 34:17 NIV Almost every day, I witnessed tiny miracles and immeasurable love in the face of death. I recorded the experiences, letters, pictures, and descriptions of people who came alongside us in our time of need. They each uniquely blessed us with gifts of time and loving, spirited service. With the help of Todd Carter from our church and our son, Luke, we recorded a video vignette to share with our church family.God must have strengthened me during the journey, for I have survived by grace with so much to share. Rich life lessons have been gleaned from the extraordinary challenge and privilege of being Jay’s primary caregiver.In loving Jay through his most challenging journey, I became cognizant that I am not alone as a primary caregiver. Across the United States and worldwide, primary caregivers like me are fighting for the lives of their elderly and other loved ones who suffer the injustices of cancer, ALS, multiple sclerosis, muscular dystrophy, Alzheimer’s disease, and myriad of other serious and terminal afflictions. According to the National Family Caregivers Association, there are over fifty million primary caregivers in the United States alone. They are the ones who rally the call for further research while emptying the bedpan. With God’s help, they round up support when it becomes impossible to forge ahead alone. And they do it all with a dose of faith and a healthy sense of humor: God’s grace mechanism. Caregivers are a special breed that way. They hang onto tiny comical moments that spawn hope and joy in order to surf the waves of discouragement. Primary caregivers are society’s unsung heroes –—God’s hidden soldiers serving on the battlefield of life and death.They need affirmation and support from the community.Creating community awareness and affirming the caregiver are the dual purposes of this book.After such exhausting, relentless love in action, the caregiver’s efforts are ultimately and tragically rewarded by great loss. When the loved one dies, the caregiver is left to pick up the pieces of life, bear the scars, and press forward to find fresh purpose.Without Jay beside me, life has been a strange new adventure. Everything familiar and comfortable is gone. I feel sort of like Dorothy in Frank Baum’s The Wonderful Wizard of Oz, after the tornado lifts her house into the sky and sets it down in a strange new land. Like Dorothy along the proverbial Yellow Brick Road, I’ve learned to take the journey one step at a time.