By Saundra Stewart
Before Don became ill with ALS, he always taught an adult Sunday School class at the church we attended. I, on the other hand, always taught children. Don was such a good teacher, and the members of his class loved him dearly. One Sunday evening, we were just leaving for church when Don told me he wasn’t feeling well. We both played instruments for worship and it created a difficult situation if we weren’t there, but I called the Pastor and told him that Don wasn’t feeling well. During the course of the evening, I became convinced that Don was having a heart attack, and I called 911. Sure enough, he had suffered a heart attack and would be in the hospital several days.
We were driving 16 miles one way to church at that time. Don felt like we should find a church closer to home to attend so we wouldn’t have such a long commute in all kinds of weather. So we attended several and finally settled on one we liked. I invited the Pastor and his wife to dinner one evening. In the course of conversation, Don said, “I noticed that the church has no special class for young married couples.” The Pastor said, “No, we don’t. Would you like to start one?” Before I could open my mouth in protest, Don had committed to teach a class of newly married couples. In the beginning, any couple attending the class had to have been married less than five years. The class grew and flourished, and others began asking to join. What a great teacher Don was to those young couples!
One of Don’s beliefs (Bible based, of course), was that a man is to be priest, provider and protector in his own home. And Don lived it. Don was the spiritual leader in our home, and I always knew that he put me and our children first. He lived what he taught. He talked the talk and walked the walk.
Fast forward a number of years. One evening Don was sitting in his powerchair and I was lying on my bed across the room. By this time, Don could no longer walk, feed himself, brush his teeth or go to the bathroom by himself. I was his total caregiver. But as I lay there looking at him, I realized a powerful truth. Because he had taught and lived what he believed so well when he was able, I still felt that he embodied those traits, even though he was totally incapacitated. I said, “You know what, babe? If someone broke into this house right now, there wouldn’t be one thing you could physically do to protect us. But because you did your job so well while you were able, I feel completely safe just by being in your presence!” It was an inspirational moment. That man of mine had lived out what he taught to the degree that he embodied the principles, even though he wasn’t able to enact them. We cried together.
You or your loved one may have totally lost the use of your physical body from the devastating effects of ALS or some other terrible disease. But it hasn’t killed your spirit. You still have principles you believe and do your best to live by. There are things from your past that have taught you what matters, what has value, and what isn’t worth fighting over. Convey those thoughts and feelings to those around you. Share what you feel strongly about. Be a driving force in your home and family. You matter. But in order for others to respect your feelings and convictions, they must know what you’re thinking.
Often, when the roles of patient and caregiver are enacted, all we have time to think about is caring for the sick one. But it’s important to continue being “you.” In a kind way, share thoughts, feelings and desires. It matters what you’re feeling. This road is difficult enough to walk without having to change your identity. You show those around you that you care when you’re brave enough to share your heart with them. Do it! Be brave! You need to talk the talk and walk the walk!
Today’s blog post is part of a recurring monthly series from our good friend Saundra Stewart. When her husband, Don, was diagnosed with ALS, Saundra became his full-time caregiver for over 10 years. In her series, “Walk a Crooked Path”, Saundra shares her insights on ALS as a caregiver.