The Ordeal of Ending Parkinson's disease

The following piece was written by BJ "Cecil the Diesel" Bement as part of the Day One: Parkinson's Prison and the Hero's Journey to Escape class.

How did this happen? How did I get here? David versus Goliath on Court TV? It started with me having to face Senator Grubbman alone. From the outset, it didn’t go as planned. I had a team of advocates I was visiting our representatives with. We were on Capitol Hill pushing the National Plan to End Parkinson’s Act. It had passed the House and the vote counters stated that Senator Grubbman was the swing vote. It came down to him and him alone. We had plotted and planned on how to approach him and looked at his background and the story of his election. Conservative, family values, supported rewards for those responsible for themselves and not so much for those riding the needy train. We were approaching his office to check in with the receptionist.

“Only one of you can go in.” What? We are a team; how can we pick just one of us? “You have to decide quickly, the Senator has many visitations today. You’ll also only have a few minutes as an emergency meeting of his Southeastern Republicans has been called for this afternoon.

“Cecil, you’re up!” Wait, what? It’s my first visit to the hill, my first time acting in support of a piece of legislation. The closest I had ever been to politics before this was listening to the hotheads on the radio and the voting booth.

“Why me? You’ve been here five times before, Michelle.”

“You spearheaded the background investigation and learned about him. You presented all to us. You know the Act backward and forwards like the rest of us, but you have personality. He has seen me before; we need the big guns for this swing vote. We can’t lose. You are our Big Gun, Cecil.”

“Is that a fat joke?” I said with a chuckle, always adding a little snark. “I don’t know if I’ll come off classy enough for this encounter. This suit barely fits, I am big as you said, but I’m sweating buckets right now.” It wasn’t just from the temperature on this warm, early spring day, but from nervousness and the weight suddenly put on my shoulders.

“You are never nervous; you always speak up when there is something to be said.”

“Yes, but the stakes haven’t been this high. If I spoke up before and missed the mark, it was just hot air…”

The receptionist cleared her throat loudly.

“I need you to decide now, otherwise we will have to reschedule”

Michelle patted me on the back and said, “It’ll be fine, you’re right, I’ve been here five times and I’ve always selected the right person at the right time.”

“Cindy, can you please escort Cecil to see the Senator? The rest of you, please wait out in the hall. I’m not trying to be rude, but the next group will check-in, and all this will replay in mere moments.”

Next thing I knew, I was standing before the heavy oak door of Senator Grubbman. Ten paces separate me from success or failure. I have to convince him and get passage of the bill. Not just for my state but for the nation. Who am I kidding, I always make light of the situation. I add jokes when somber tones are called for. ‘Cecil the Deisel’ isn’t just a nickname for plowing through what is in front of me but because I can also be a bull in a China shop.

The door is swung open before I can take another breath and my feet move by themselves. 

The Senator says, “Welcome.” Rising to shake hands. I grab his hand and then point to the portrait over his shoulder, a large representation of him sitting on the edge of a desk staring down at the artist. The frame was very ornate and almost gaudy. “I see you’ve been framed while in office!”

Ugh, the default to humor. He gave me a charitable chuckle, “How can I help you?” he asked as he sat back down and motioned towards a seat for myself. Cindy, his staffer stood off to the side to help usher me out when told.

“I know we only have a few moments, so please dive right in, I’ll have to refrain from small

talk. I hope when I am back in town, we can have a more cordial visit, but I want to hear what matters to you.” The Senator said, virtually removing all of my personality in one swipe. That’s how I get ears to open, by engaging people leading up to the purpose.

“Yes, of course, Senator” I began to relate all I knew about the Act, the reasons, and benefits, how it is bipartisan, and limited cost and I segued right into my personal story with Parkinson’s, the national statistics, and numbers for his voting district. Before I realized it, I had just laid out a perfect argument for the passage, why it benefitted him to do so, and why it mattered to the future of Parkinson’s patients. I even related a dark vision of what would happen if the Act did not pass. All within eight minutes. My mouth was dry, my bladder was pressing, and my sweat was rolling. I told him that my ‘thermostat was broken’ explaining away my damp appearance.

The Senator stood and rounded his desk resting on the edge just as the portrait depicted. A vision of confidence and authority that people found enticing during the election, but which now felt browbeating. “Cecil, I must tell you that I am still on the fence on this. I know it seems like such a simple choice, but everything has ripple effects. I am trying to chase those down to see what shores they will land on and if any rise to be tsunami-like. Nothing is ever simple in this town.”

“Are you leaning in any one direction?” I was hoping to leave with some type of idea. Did I make a difference? Was my visit futile? Could Michelle have done better, a face he had seen before?

“I am leaning against passage, but only slightly. I am waiting on a couple more reports to finalize.”

“Senator, it isn’t just me in this room. I represent a whole community of people much further along and less able than myself. I have been fortunate thus far. We need this vote. We need this Act. It gives us a voice. What can I do to convince you?”

A dismissive chuckle as he stood up to round his desk again, “I love visits from my constituents. It breaks the monotony of the chores of the office, but it will be the information that makes the determination, not pulling on heartstrings. It is why I was elected.”

In desperation, I reached out and grabbed his arm. He jerked as if shocked and swung around. Before I knew it, I said it.

“Senator, we know about your investments.”

Oh, crap. This was the one thing we all said we WOULDN’T say. The warmth exited his eyes. I was all in now, the boundary broken.

“We know that you have shares in these chemical companies that may be curtailed in the production of materials leading to Parkinsonism. For once, don’t be like the rest of governmental officials, being self-serving. Work for your district. We aren’t just numbers we are people struck down in the prime of our lives or just entering retirement. We need hope and it is in your hands.”

“Cindy, please call security, I have just been assaulted. Mr. Cecil, as you like to be called, yes, we know about everyone in your group, we leave nothing to chance. I will not be knocked over by your Mack Truck tactics. You are about to see what happens when you assault a member of Congress.”

“I didn’t assault you; I grabbed your arm to gain your attention, it was a reaction.”

“You mentioned certain investments. That is an assault on my integrity. And of course in the past few days, that money has been moved and I am clear of any collusion. Enjoy your stay in prison. It is one of the fine things that the government provides for the public."

Since that encounter, I was ushered and railroaded through the trial. My attorney’s fees were being paid for by crowdsourcing, and my disability checks were not able to pay for them. But where I was a Mack Truck, she was a Bulldog. She engineered this encounter, not only between me and the judge but also by having it aired on Court TV. She knew that my statement before sentencing would be shown. We worked on the wording and tone and decided to be brave. Like David in this fight, I had my sling and stones available.

"Mr. Bement,"the judge said. "Do you have something to say before I give a sentence?"

"Yes, your honor, I would like to say that, for the record, I did grab the Senator’s arm. It was not an assault, but a desire for him to hear me. I had never been in a Senator’s office before and didn’t know how to respect my distance or how egregious contact would be viewed. My cause is just. The people I was representing were counting on me, not just my group of friends, but the entire American Parkinson’s Community. That is a huge weight to put on someone whose strength is already compromised. Parkinson’s is insidious and doesn’t get the respect it deserves. It can affect each person in different ways, enough to tear their world and livelihoods apart. I couldn’t understand why the Senator would even consider voting against something so seemingly simple. But his judgment had compromised your honor. I know he isn’t on trial here and I won’t levy accusations. I just know that his decision was based on service to self, not his constituents. I wanted the government to be, ‘of the people, by the people and for the people.’ He made that impossible. I am sorry I reached out and grabbed him, but it wasn’t malicious. His vote on this Act, on this very day, will affect not just his district, but the entire nation. The stakes are high, and my actions reflected the weight of that. I am sorry to Senator Grubbman and to everyone I was representing in that office. I know my actions have caused problems and not solutions, but I beg the court’s leniency as I was a first-time visitor to the Hill, and I know better now how to conduct myself should the opportunity ever arise again."

“Thank you, Mr. Bement. I will agree with you that your actions have consequences, but I also know how a cause can make people react in different ways. Your passion and service to the community you represent show that. Since your diagnosis ten years ago, you have been in constant service to those people. I understand you have received certificates and awards?”

“Yes, your honor.”

“Well, you were found guilty, but you have been living a sentence over these past 10 years. I am not going to confine you to another prison. I am ordering you two years of probation. Keep yourself clean and clear of any wrongdoing. During that time, you are also to steer clear of Capitol Hill. You can only contact your representatives through electronic media or phone calls. Is that clear?”

“Yes, Your Honor, thank you.”

“And Mr. Bement? Never lose your passion for a cause, especially one so personal to your situation. Just keep your hands to yourself, hmm?"

The judge gave me a wink and I gave him a "yessir" nod in return

.

On the journey home, I thought about how things would need to change. I had ruined the chances for the Act to be passed this year. I wouldn’t be on the team visiting DC next year, but I could work behind the scenes helping others to be victorious.

As we arrived home from the airport, I noticed many cars lining the streets. I saw quite a few people standing next to their cars with Blue glow sticks waving them around. What the hell was going on? Someone was clearing the driveway of people so we could pull in. I got out of the car to cheers of ‘Cecil! Cecil!”

Michelle rushed up to me.

“What is all this? Are you kidding me? I failed!”

“No, no you didn’t,” she said, her eyes tearing up. “He must have seen you on Court TV! Senator Grubbman voted YES!!!!”