We seek and crave connections especially in our darkest hours but we really are alone. No one is experiencing what we are experiencing. We are isolated in our despair. Only those who are also experiencing it can understand it and share the burden and pain. Brian was the one person who shared the experience with me. But he was enveloped in his own dark world of fear and despair. Physically Lou Gehrig’s disease deprived Brian of the ability to reach out and touch me. Emotionally it rendered him incapable of reaching out and connecting with me. I lost him the minute the diagnosis was given. Our emotional connection was severed when the death sentence was pronounced. I didn’t realize that at the time. I so wanted to connect with him – to grow even closer to him for whatever time he had left. But wishing doesn’t make it so. What is that old expression? “If wishes were horses beggars would ride.” Brian was entirely wrapped up in his own world – a maze of fear, anxiety, regrets, physical pain, anger, remorse, hatred. And I was angry with him for pushing me away.
All that remained was the memory of our great love. That memory would have to sustain us for the few remaining years. I was reminded of a car rambling down the last distance of road on the fumes from its once full gas tank. Our lives were reduced to waiting for the end to come and trying to manage the final journey as gracefully as possible. It was about wheelchairs, bedpans, feeding tubes, bedsores, insomnia, assisted showers, assisted trips to the bathroom and containing the rage and fear. His pain was my pain and so we traveled down that long, dark road to death together but apart.
We were separated by a wall of silence and anger – his and mine. I tried to talk to Brian about how I felt. I often asked how he felt. He was silent. He would look at me with eyes filled with anger and hatred. I suppose he thought it should have been obvious to me how he felt.
Eventually I stopped trying to connect with him. I think Brian remained angry until the day he died. I recently read that a person dies in the same way that he lived. Brian was, in many ways, always a person filled with anger. I couldn’t control how he chose to die. I could only control how I chose to react to him and the situation. My anger over his refusal or inability to connect faded. I realized I had no right to judge him. The answer for me was found by asking myself the question, “How do I know how I would be if I was the one dying a horrible and agonizing death?” I had no right to presume I would handle it any differently or any better than Brian was handling it. There was no right way to handle this – at least none that I know of. How arrogant of me to presume that there was. When I would become exasperated or impatient or angry with him I would ask myself that question.
When I first met him, one of the things I found attractive about Brian was the way he dressed. I am not referring to the type of clothes that he wore. They were not expensive. But he was always neatly dressed. Perhaps the best way I can explain it was that Brian was in the military and he continued many of those habits into his later life. His clothes were always neatly pressed and he was always very well groomed. He had beautiful hair. I know that is a strange thing to say about a man but he did. One of the nurses even commented on it when he spent some time in hospice care. She described it as “U.S. Senator Hair.” It was a beautiful gray color and very fine and soft.
Brian would wash and dry his hair each morning, comb it into place and then apply some hairspray. Well the time inevitably came when Brian could no longer fix his own hair. This happened early on in the disease or as soon as he could no longer use his left arm. He had use of only one arm and you needed two to manage the hair dryer and the comb. He was still going to the office at that time. Brian was very particular about his appearance, especially his hair. It became my task to style his hair every morning. It was a huge process for me to try to get his hair to look like he did it. I could never do it right. He was usually disgusted with me because I never did it the way he did. Disgusted may be too tame an adjective but I will leave it at that.
After I dried and styled Brian’s hair I would dress him. That was a bit easier at least at that point in time. Brian’s balance was impaired but he was still able to steady himself on a counter or wall while standing. Once he was fairly steady he would lift each leg and I would put his pant leg over his foot. Unfortunately each day brought many more and new aggravations and limitations.
“You b****. You whore. You are so stupid. How can anyone be as stupid as you are? F*** you! You are a piece of s***,” Brian shrieked at me. Brian was staring at me and his entire face was contorted with rage and hatred. “Get the f*** out of here,” he screamed at me. I had just raised my head up from the floor where I had been putting on Brian’s slacks. My hands are trembling as I write this.
I had felt something brush against my head after I bent down. I realized that Brian had taken a swing at me with the fist of his good arm. He missed me because I had ducked down to put on his pants. It took me a minute to sort all this out. I was stunned. The look on Brian’s face was terrifying. It was beyond rage. “Get the f*** out of here,” he kept screaming at me.
I was shaking as I left the room. “Close the f****** door on your way out you b****!” he screamed at me. I left the bedroom and closed the door. My whole body was shaking. I felt like I was going to throw up. I waited a little while and then I knocked on the door. “Get away from that f****** door,” Brian screamed from inside the room. I ran to the telephone and called one of his friends.
“Richard I don’t know what to do. Brian is in the bedroom and refuses to come out. He is acting irrationally? Can you come over?” I asked. I didn’t tell Richard about anything that had happened. To his credit Richard came right over to the house. Richard knocked at the bedroom door and announced his presence. I heard Brian tell him to come in. I have no idea what was said between them that morning. Richard left after about an hour. I went in and helped Brian get dressed. He left for the office shortly thereafter. After Brian left for the office I asked myself, “How do I know how I would act if I was the one dying a horrible and agonizing death?” Brian and I never spoke about the events of that day.
NOTE: Life can be tremendously difficult and challenging but also tremendously rewarding if we cultivate the "right" attitudes toward those events and our lives. This will become more apparent to you as this story unfolds. I tell you this because it is not my intent to make you feel depressed but to help you to cultivate attitudes in your own life that make even such times as those written above something you are grateful for.
