There it is again, the blank stare. Sometimes they say, “I don’t know what that is.” Other times they say nothing, looking at me with knitted eyebrows and a puzzled expression.
It is always in response to my statement, “My husband has been diagnosed with ALS.” Amyotrophic Lateral Sclerosis. Even the name sounds scary. Other people recognize it as Lou Gehrig’s Disease.
Months of deteriorating speech, choking on food, and still no answers! Meals together were something we so enjoyed, a chance to sit down and chat about our family and friends. What accompanied our mealtimes was overwhelming fear that this time when he tried to swallow, he would choke to death. At times, I had to perform the Heimlich Maneuver to try to dislodge food in his throat. And then I would dissolve in tears as we held each other, crying out to God to help us and for wisdom for the doctor that he would provide some answers.
There is nothing simple about ALS. There is not a test that will diagnose it nor a medicine to cure it. It is devastating, horrific and relentlessly attacks the voluntary muscles in your body. There is awareness of every symptom, because your mind usually stays sharp while your body is destroyed, one part at a time.
Fifteen months ago, we traveled to Connecticut for our daughter’s 50th birthday party. Eleven months ago, he spoke his last words. A month later, he had a feeding tube placed. He was still choking, and he was losing weight. The feeding tube proved to be a blessing in a way. The anxiety and fear had been erased from mealtimes.
Life as we knew it is no more. He cannot speak. I chatter to him throughout the day, sometimes forgetting that he cannot answer. All I hear is the sound of his pen on his dry-erase board as he answers me, or perhaps a sound from his throat as he attempts to get my attention.
My heart aches for him and tears well up in my eyes. I haven’t heard his voice in 11 months. He still has a voice, but the muscles in his tongue and lips have atrophied to the point where they cannot form words. Never again will I hear him say, “I love you.” That, too, has been snatched away.
My handsome husband, a Special Forces soldier in the Army who served in Vietnam, now faces another enemy. A year ago, he was full of energy, working part-time, volunteering every week to deliver meals to the needy. Now, he cannot speak, cannot eat, spends his days in a motorized wheelchair and nights in a hospital bed, and has two machines to help with his breathing and removal of saliva from his throat.
Throughout this heartbreaking journey, we have been blessed immeasurably. During the summer, a neighbor we hardly knew mowed our lawn every week. A church friend comes by with a bowl of soup; cards and notes arrive frequently; our Sunday School class prays for us daily.
We are still crying out to God, but we are thanking Him for all of the many blessings He has provided. Three nursing assistants arrive daily at different times to help with his care. I realize that physically I cannot do it all.
My husband is an inspiration to many. He never complains, taking each symptom as it appears and dealing with it. He is blessed that people who love him have time to tell him and he has lived to see our children and grandchildren grow up.
When I hug him, I try to take it all in: the smell of his cologne, the wrinkles of his shirt against his arms and back, the feel of my arms around his neck. I’m trying to imprint it in my memory for fear that some day I might forget. I want to remember every single detail. I’m tired, but I pray daily for the strength, courage and ability to take care of him. It is an honor and a privilege. I remind myself that God is in control. He has a plan. He is there.
Judy Karvelis lives with her husband, John, in Summerville.