Editor’s Note: With the recent videos circulating on Facebook and other social media about the ALS, Lou Gehrig’s disease, ice water challenge, Doris Butt recalls a friend who had the disease. Butt regularly contributes a column to Register Publications’ Over 50 paper, and is a retired Central Elementary School teacher. This column was written for Over 50 in October 2008, and Butt was in Florida at the time.
It is 4:55 p.m. and we are ready to eat. There is no sign of Dick. Everyone sits down at a table and it gets quiet. We do not know what to expect. Maybe he is too tired and is not going to make it.
Dick called to say he is coming to Inverness for a week to visit with his friends. He said he planned be at our club soup supper.
He lived in our mobile home park and used his many skills to help anyone that needed assistance. He had a special passion for helping the homeless, especially those that lived in the woods outside of town. He called them “his gals and guys.” He kept supplies in his truck in case he met someone in need. I heard him say many times, “Whoever needs food, I give it to them. If I have anything they need, I give it to them. I don’t care who they are.” Dick gave unconditionally.
Then Dick told us, “Something is the matter with me.” He did not even have enough strength to drive a nail. He went to several doctors and three times he took painful tests. I remember his words. “They jab a needle in this far. (two inches). It doesn’t hurt going in, but when they wiggle it around…boy. They did that to every muscle in your body, even under my tongue. They give you those little electric shocks too; they sure make your feet fly up.” We were all saddened, to say the least, when the diagnosis came. He had Lou Gehrig’s (ALS) disease. It leads to total helplessness.
His reaction, “I said to Doc, I don’t have a problem with that. I have lived a good life. If I got it, I got it. I’ve got to go home (New York).
When I can’t help myself, I will get someone to come in and take care of me. I’ll need help.”
Dick, now 73, left last year when he could no longer drive his truck. Soon afterwards his wife died. Some commented she would not have to see him suffer. We recently learned now has full time care. Even though we know Dick is a man of great determination, we wonder how he would manage the trip.
At exactly 5 o’clock Dick opens the clubhouse door. We all are taken back. He is thin and his arms hang limply at his side. His head tilts forward. He gives a broad smile and says, “I made it.” Many blink back tears as he goes from table to tables to receive hugs and handshakes. He introduces his caretakers, Shirley and her daughter Linda. Somewhere he had seen Shirley, an old friend, and asked her to come to take care of him. She did. Now she is his nighttime and morning helper.
Dick sits the table with Ray and me. He patiently sips his tomato soup with a straw. Fortunately, someone had brought a chocolate pudding which Linda feeds to him. He tells of losing 50 pounds and I realized that is why he looks so frail. We have a most lively conversation. I notice when he clasps his hands and gives them a big sling he can tend to his nose which constantly runs. Shirley says he has a machine that could help that but he has not given in to machines yet.
Dick shares that he does not have any pain. He announces the best news is that he could still dance. (His legs are strong yet.) He has Linda, his pretty helper, stand. Then she helps him put his arms around her waist and they do a few steps. His weak arms slip down around her hips. He laughs and said, “It all ain’t bad.”
Later my husband Ray has an unforgettable moment with Dick when he comes to visit with his friends from when he volunteered on our Rails and Trails Park. Ray is there volunteering on a fence building project. It is a chilly day so Ray buttons his shirt for him. As he is filling around a fence post, Dick asks for a shovel. Ray places his in his hands drooping below his waist; Dick pushes it in the dirt, and then gives it a kick with his foot. He laughs and says, “Now I have helped you,” Tears flowed for their good friend.
I am sure he found ways to help the homeless while he was here. I do know that he is welcomed at the church which provided much of his food for his homeless. There Linda fed him communion.
Dick has a safe flight home. Soon he must have a feeding tube and a breathing tube before he gets too weak. I am sure, as the disease grips him, he will have many pleasant memories of his visit back to Inverness.
My thoughts of Dick bring tears to my eyes. At first, I think they are for him, but now I am not so sure. Maybe they are for me. Maybe I have tears of frustration What about me? Am I challenging myself? I must seek out some of Dick’s determination in me. I am wasting so much of myself.
Dick lived two more years.
Doris Butt is a retired teacher, and splits her time between Indiana and Florida.