A Road Not Taken: A Patient Tribute By Dr. Christopher Pendergast The Ride event remained months away. The decision was spontaneous. After years of following one route, I decided to change the roads for the annual ALS Ride For Life wheelchair event. The new direction brought us through the village of Port Jefferson. I reasoned, it was more visible and provided greater opportunity to spread awareness. Although others questioned the break with tradition, I felt comfortable with the new plan. Before long it arrived. The day began ominously with dark skies and a cool breeze. Rain was forecast. Since ALS does not stop killing during inclement weather, we wheeled off. The divided highway contained the normal heavy traffic of a Saturday morning. Another patient and I rolled along behind the police escort and a gaggle of supporters brought up the rear. The spectacle of such an entourage traveling down the road achieved its goal, everyone slowed down to investigate the peculiar parade. The huge, trailer borne sign, sixteen feet long, and ten feet in the air proclaimed “Strike Out ALS”. Spreading awareness, indeed! My eye caught a red figure off in the distance. On the opposite side of the divider, a red shirted woman emerged, calling out my name. Amid the congestion and craziness, this occurrence did not strike me as unusual. Over the years and through extensive media coverage, I had become a notorious character in the community. I assumed the woman was another excited bystander who recognized me. I smiled and nodded as I passed. She waved and shouted, but I did not pick up her message. I could not read her T-shirt. At 64, my ears and eyes are not what they were. We continued riding. Luckily my wife, who was walking in the back, did recognize her. In defense, my wife does wear glasses! At the next intersection, our group turned off the highway heading toward the village. Breathless, my wife caught up with me and told me the stunning news. The red shirted woman was Vinnie Cullen’s assistant. Several months earlier, I was informed about a new patient whom I had to meet. He was described as a fighter and a go-getter. Finally, I thought, another patient like myself; someone who will work beside me and help tame the beast afflicting us both. An appointment was made to meet at his office. I rolled into the room and was greeted by a broad smile, vigorous head nodding and thumbs up. The disease had already stolen Vinnie’s voice. We plotted and planned. Immediately, he agreed to help me make some connections with school districts across the island because he was an auditor and knew many key administrators. We waxed about advocacy and the upcoming Ride. Most of our communication was facilitated by his assistant of sixteen years, Karen. Sometimes, she did not even need to wait for him to finish writing because she intuitively knew what he wanted to say. As the Ride neared, we held a Kickoff Celebration. I eagerly anticipated introducing Vinnie to his new family of Ride supporters. ALS had other plans for us. Vinnie took a nasty fall attempting to get dressed to come. He never made it. Following his fall, the emails became less frequent and Karen shared that Vinnie was failing rapidly. I attempted to rally him by referencing the great time to come. Participating in the Ride was life altering for a patient. ALS had no treatment and was fatal. Diagnosis often left patients devoid of hope. The Ride For Life experience restores it. It wins back a sense of purpose and empowerment stripped away by the paralyzing illness. I thought doing the Ride would be the best medicine Vinnie could have. I tried to focus on Christine’s words, which were coming at me rapid fire. The staccato phrases made no sense as she agitatedly continued. Slowly, it began to dawn on me and the fog lifted. The woman was not an admiring bystander, I realized. It was Vinnie’s assistant, Karen. She was not shouting encouragement, instead making an announcement. Tragically, three days before the Ride event began, Vinnie passed away. ALS had other plans for Vinnie, killing him before he could join other patients on his Ride For Life. Riding without my new partner numbed me. Now that I was on his home turf, his absence was more strongly felt. He should have been with me that day. Damn you ALS. What Christine shared was beyond belief. Karen told us Vinnie was being waked down the block on our way to the village. We looked at each other, knowing one another’s thought; so this was the reason? Months ago but without foreknowledge, the route was re- plotted for Vinnie. In death, he was able to beat ALS. For once, he defied the damn disease. Vinnie was not to be denied. He would be on the Ride. As we neared the funeral home, we explained to the police. The lead police car escorted us into the circular driveway. We gathered at Vinnie’s side, separated by the building’s wall. But that did not matter. Vinnie could not come to us, so we came to him. He got his wish, although not the way all of us wanted. Still, I say he beat ALS and got his way for a change
Posted on: Mon, 17 Jun 2013 14:15:59 +0000
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