A Brave New World

That's one of my favorite novels - Brave New World by Aldous Huxley. It seems apt to something that a group of us are going through.

My chapter is entering a brave new world and I think I'll use this forum to post some observations about it. I'm thinking this might become a pamphlet that other chapters can use when they find themselves in a similar situation.

Today is July 10, 2009. On July 1, 2009, a new chapter president took office. Our new president was diagnosed with Amyotrophic Lateral Sclerosis (ALS), or what is commonly called Lou Gehrig's Disease, earlier this year. He is recieving treatments at the best hospital in the world, but unfortnately, the disease appears to me to be progressing rapidly. Last fall, we noticed a slurring of his speech. Folks asked me if he was intoxicated at our meetings. I assured them, as I was certain myself, that he was not. He had never been know to drink to excess and I sincerely doubted that had changed. In November, he confided in me that he was concerned about his speech loss and was seeking a diagnosis, but he too was certain it was ALS.

When the diagnosis came, chapter leaders as a whole were uncertain how to proceed. We didn't want to seem unkind or hurt his feelings in any way. If he wanted to serve, we were prepared to let him serve as president. I guess, we had to reassure each other first of that fact.

The little I know about ALS comes from the book Tuesdays with Morrie by Mitch Albom. Great book, I highly recommend it. In sinister thing about ALS it is takes your central nervous system away from you piece by piece while leaving your mind completely intact. Our dear president lost his speech very rapidly - after the initial noticing of difficulties in October or November of 2008, by March of 2009, he was unable to be understood at all. Chapter elections were held in March and he was elected president, after serving as 2nd VP and 1st VP. The Nominations Committee had several emails exchanges with him offering to let him out of his obligations. He declined each time, I suspect out of a sense of honor and out of a need for normalcy and aggression to beat this disease.

Unfortunately, he was not forthcoming with many people about his condition and tried to soldier on in as normal a fashion as possible. It was and continues to be extremely difficult. He continues to have difficulty with basic muscles motions, especially his facial muscles. Personally, I continue to be uncertain if I should inform people about his condition; I am concerned about invading his privacy. I never took the opportunity to discuss this with him and he never gave me permission to discuss his condition with others. As folks asked me about him, I rather sheepishly told them what was going on. As time goes by, I think that's what he wanted, but I wish I would have asked and then recieved permission to act as such.

His initial President's Message in our monthly newletter alerted membership to his condition. I felt better about the whole thing upon reading that message.

He attended our national convention in June but was a loner during it. I spent some time with him during our region caucus, but not much other time. I felt bad about that, but have been having trouble with my own feelings and inadequecies about his condition. I mean, my parents worked with disabled adults when I was young. I've been around folks with very serious physical and mental disabilities. I should know how to do this! I'm getting better; more comfortable. But its a struggle for me.

Thursday night was our first Board Meeting with our leader at the helm. He has a laptop with external speakers and software that he can type messages in and the computer speaks for him. Its a good, strong, confident voice. Our president is extremely intelligent and his grasp of the English language is on par with any professor or writer. It was reassuring to have even the computer voice speak words that we know come from his mind.

There were some lulls in the meeting business as he slowly typed on occasion. I think, though I'm not sure, he had some messages typed out before hand. We have a number of new folks on the board and there seemed to be some nervousness about things were going to work. After a rocky start, most present had not recieved the minutes of the previous board meeting and since we were meeting at the president's office, he went to make copies, we settled into the meeting.

When I was president, I let discussion move along, but was quick to have committee business stay in committee meetings, not in the board meetings. Our immediate past president had a similar style. Its difficult to run a board meeting if your only experience is running meetings at your work as an architect. Our current president is an architect, so I'm sure he struggled a bit with the ebb and flow of the meeting. Also, members were quick to fill the voids in conversation and at times, the meeting dragged. But, in general, we got through our business. We started about 5:40 PM, had pizza and beer in the middle, and finished at 7:35 PM.

As we got through Old Business and were heading to New Business, the battery on the president's laptop died. Our 1st VP was not in attendance as he was recovering from hip replacement surgery and our 2nd VP was further down the table than I, so the president wrote a note to me asking me to take over. I briskly worked us through the remaining agenda items, occassionally reading hand notes from the president.

I think the message here, after our first meeting with our new president, is patience and flexibility. And probably a heavy dose of "get rid of your nervousness!"