The disease ate away at and ravaged our emotions just as it ate away at and ravaged Brian’s body. Brian first lost total use of his left arm. It just kind of hung on his body like a dead tree limb hangs from the trunk of a tree. When he walked it would flap around like a dead tree limb does in the wind. Brian developed the habit, whenever he moved, of using his right arm to hold his left arm close to his body. His left arm would still hang loosely at his side when he held Gary with his right arm pressing him close to his chest. That left arm was a gruesome and constant reminder of the disease that was eating away at his body.
Physically his body deteriorated in increments. Brian started to shuffle when he walked. He couldn’t stand for long periods of time. His right arm deteriorated. He couldn’t hold our baby son in his arms anymore. After 18 months he was in a wheelchair on a full time basis. The damage was irreversible. The doctors had informed us that there are just about as many variations in the way the disease progresses as there are individuals that have it. We had no information regarding the emotional deterioration.
I do believe some people experience or feel things more deeply than others. I believe I am one of those. Oh I wished many times that I wasn’t.
Right after the diagnosis the best time for me was early in the morning when I was half awake. Initially, when I was waking up, I would have this ominous feeling in the pit of my stomach that something bad was going to happen. In my half awake state, I could convince myself that the foreboding feeling was just the remnant of a very bad nightmare. I would sigh with relief. But when I was fully awakened I could no longer delude myself. As time went on I could no longer be comforted by the delusion that this was all a nightmare. I would bolt awake with the feeling that I was going to throw up. It was a nightmare - just not the kind you have when you are asleep. Fortunately whatever I was feeling could not be front and center for very long. There were many things to attend to including a crying baby. However, this evil was never forgotten for long. It had taken up permanent residence in my psyche. It was like a black blot in my consciousness comprised of every horrible feeling you can imagine – pain, desperation, loneliness, rage, fear, anxiety. That black blot grew in size and shape as the disease progressed until at the end it swallowed me.
Tears would have been such a relief. I couldn’t do it. I couldn’t cry except on a very few occasions. And I wouldn’t describe what I did then as crying. I emitted some kind of a primitive sound deep from within my body. It scared the hell out of me. I couldn’t believe that sound came from me. It was a primordial sound. The first time it happened I was in the bathroom of our house. It was shortly after Brian told me about the disease. The last time was when I first saw Brian’s lifeless body. I have no idea what brought it on the first time. I was alone in the house except for the baby who was sleeping. I collapsed onto the bathroom floor, screaming, crying, sobbing, heaving, writhing and emitting that sound. I must have looked like some primitive animal that had been fatally shot and was slow to die. Words were not coming out of my mouth only that weird, non human sound. After several minutes I was exhausted. I lay on the floor quietly for a while, more exhausted than I had ever felt. I heard the baby cry. I slowly pulled myself up off the bathroom floor. It was time to get back to the demands of the living.
Adversity by its nature is unique. We each define it differently and we each cope with it in our own way. Hearing the stories of other widows and widowers gave me hope that I could survive but it really didn’t give me the tools to get through each and every day. I didn’t want to go about my business as usual pretending everything was “fine.” Yet what was the alternative? I had to find my own way to live with the pain just like I would eventually have to find my own way to heal. I felt like I was slowing sinking into a quicksand of despair. No one seemed to be able to throw me a lifeline. Certainly Brian could not.
