There was Patricia, in her 40's with Down Syndrome...Gregarious, always laughing, full of joy and eager to be a part of a "normal world." There was Mrs. King, who came to be my "little Grandmother. A beautiful black woman who looked like an African Queen, with her long neck and tall figure, walking with dignity through her golden years. Mrs. King was college educated...A rarity for a lady of color, then in her 80's.
Then there was Harold. Harold was in his 50's, trapped in a body, tortured with the debilitating disease of Huntington's Chorea. He was bent over at the waist, arms elongated to the point of nearly dragging the floor. His mouth hung open and his speech was unintelligible. No one could understand Harold...I could. For some reason only God knows, I could understand Harold perfectly. He became my Buddy and I would sit with him in church.
Hygiene was not tops on Harold's list, nor on his caretakers. Now and then I would talk to the nursing staff and beg them to give Harold a little spit polish and shine. Either Harold resisted, or the staff wasn't too interested in helping him...It didn't matter...I was his Buddy and a Buddy loves you even if you don't smell like a rose.
Harold was determined to come to church, no matter how hard it was for him to navigate the 20 feet or so from Nursing Home door to Church door. He had a hard time walking slowly. His gait was full tilt, make a run for it, take no prisoners, fast! If he didn't have a belt on, he would generally arrive with his pants somewhere in the vicinity of his knees. Unabashed, Harold would plow right on in and be seated in his pew. He came to go to church. He had no reason to think that wasn't the norm.
Usually, one of the men would hitch up his britches and Harold was good to go. Inevitably, during the services, he would stand when the rest of the congregation did and slowly but surely, down the pants would go...That's when I started sitting with Harold. I guess I was the Keeper of the Pants...Oh yeah, and his Buddy.
Harold and I would sit there through the service and then afterwards, we would walk....no, make that run, back to his room in the Nursing Home. We would sit and "visit" a while. That's when I got to know who Harold was.
Huntington's had robbed him of many things...His ability to speak clearly, to walk upright, to make his own way in the world...What it did not rob him of was his dignity. He was a man and wanted to be seen as a man and not as handicapped.
Huntington's is a hereditary degenerative brain disease. Usually beginning in mid-life, cells in the brain begin to die, causing a relentless deterioration of intellectual ability, emotional control, balance and speech. Chorea, or involuntary movements, is nearly always a symptom as well. Harold had all of the above, but yet, he had that tenacious dignity.
He told me many things about his life before Huntingtons. He was a cement worker from, of all places, Cement, Oklahoma. He once had a family and had two grown children. He carried their photos in his wallet and proudly showed them to me again and again. He spun yarns in his garbled speech, but somehow, I understood.
It was Christmas and just like every year at Christmas, the church took up money to buy fruit and candy to give to each member. A couple of weeks before the holiday, the Pastor stood up and went through the same laughter filled ritual. Several who had money to burn gave enough to cover the cost. Some gave a couple of dollars. Each would stand up and make a pledge of what they were going to donate. Then Harold stood up...I caught his hand and whispered to him to him to sit back down. I was sure he was confused as to what was going on...I was wrong. Harold knew exactly what was happening. In his slurred speech that usually no one but me and God understood, Harold spoke. Everyone in that church understood what he said that day. "I give, I give..." He pulled out an old, broken wristwatch and held it up high..."I give, I give." The silence was deafening.
Harold finally sat down next to me, still mumbling, "I give, I give." He had given. Much more than anyone in that sanctuary on that cold winter's day. I fought back tears, knowing that watch was all he had and he was willing to give it to us.
Christmas came and Harold got his gift bag of fruits and candies. I sat next to him and handed him his bag. He promptly tore it open and took out the fruit and shoved the candy at me..."Candy not good for you!" I guess I got that!
The months passed and Harold remained my Buddy. He and I were tight. I don't remember what time of year it was or how I found out. All I know is, I was told Harold was in the hospital and wasn't expected to live. I raced to the hospital to find his sisters had already gotten there. Somehow during that week, Harold had been found in his room, unconscious. He had choked on his food.
He lingered for a couple of days. I haunted the hospital and got to know him even more through his sisters. I told them the story of the man who wanted to give everything he had. They in turn, gave me a photo of Harold when he was robust and healthy. We laughed and cried together as Harold slowly slipped away. He had been in a coma since the choking incident and never woke up. I was home, just one block from the hospital when his sister called to tell me Harold was gone.
I wanted to say goodbye and asked them if I could come see Harold one more time. I didn't want to intrude, but they knew he was my Buddy.
Within minutes, I was standing in the doorway of Harold's hospital room, weeping with his family. I walked to the bed and there was my little Buddy. Once gnarled hands were softened in death...Once agonized muscles were relaxed. His pain wracked face was haloed in peace. I cried tears of sadness that my Buddy was gone and tears of joy that he had gone Home and would never again suffer. I patted his hand and told him goodbye for the last time and walked home with a broken heart.
I will never forget my Buddy. I'll never forget the man who stumbled through his final years in a body that had betrayed him. I'll never forget his dignity and the love we shared as friends...Nor will I ever forget the man who said, "I give, I give." There once was a man....
The song you hear playing is, "Thank You," by Ray Boltz. Let me share a few lyrics. This is "Harold's Song."
Thank you, for giving to the Lord,
I was a life that was changed.
Thank you, for giving to the Lord,
I am so glad you gave...
And Harold spoke..."I give, I give..."
Allison Chambers Coxsey
To learn more about the disease, Huntington's Chorea,
please visit the Huntington's Disease Advocacy Center
website by clicking here.