The invitation to an Art Showing which was my first Parkinson's Awareness Day

held on April 11, 1999

Please join us for Parkinson's Awareness Day! Sun. April 11th, 1999 10:00 am - 6:00 pm (CST) at the Shore Acres Club House in Chillicothe, Illinois, USA where we will present an Art Exhibit "THE LETTING GO: A PARKINSON'S STORY" (Artwork and Photographs by Jane Scott and Mark Esser) Jazz Music by Preston Jackson and Friends Food catered by Connie Hellman of "A Matter of Taste" Come One - Come All

 

1st Parkinson's Awareness Day In Chillicothe, Illinois
April 11, 1999

"I get by with a little help from my friends…" It all began very innocently, over lunch at my favorite Oriental restaurant with my good friend and mentor, Tom Kelly. As usual, when parkies congregate, the talk soon switched from the weather outside (it was frosty, chilly January in 1999) to the topics that are near & dear to our hearts: meds, schedules for pill taking, and, of  course, pallidotomies. Tom & I were both survivors of this surgery and we could go on for hours about halos and holes drilled in skulls as our friends loose their appetites. On this particular occasion, however, rather than driving the surrounding diners to hurriedly call for their bill, a woman approached us and asked if we were indeed talking about Parkinson's. It was a moment that none of us will ever forget. That woman was Jane Scott, the daughter of Claude Scott who had been a teacher at the  local high school for many years. Soon after his retirement, Claude had been diagnosed with Parkinson's Disease and Jane had spent the major portion of her life dealing with his rapid decline and eventual death due to the disease. Did I mention yet, that Jane is a very gifted and talented artist?? Well, her way of coming to grips with the reality of this situation was through her art. She enlisted the aid of a fellow art student and family friend, Marc Esser and together they embarked on an extremely personal and completely honest look into the face of this disease which was taking her father away-little by little, as the dementia took hold. Although this work was never initially designed for exhibition, they did decide to exhibit the art at Bradley University in Peoria, Illinois. I had been to see the exhibit about 10 times, taking various friends with me to help them to understand where I was coming from and what the future quite possibly held for me. On one occasion, I went with just my husband and in that eerily deserted gallery; we clung to each other as if by sheer force of will, we could stop this intruder on our lives. All of this information was exchanged in a rush of recognition-she knew of Tom and me and of course, we felt like we knew her though her powerful art. I just had to ask about the art and the photographs that Marc had taken-"where were they now?" I wondered. To my horror and dismay, I learned that they were in a warehouse in downtown Peoria, gathering dust.

Now for days, I had been toying with the idea of trying to do something for Parkinson's Awareness Day but I wasn't sure what to do or how to go about doing it. When this opportunity presented itself, it was as if God were saying to me: "Here you go, be careful what you ask for…now run with this!" I asked Jane if she would be interested in getting the art out for a showing for Awareness Day. Jane readily agreed but wanted to know where, when, how & why. I just knew that this was the start of something big…very big. I spent the next few days planning and discussing and changing my mind. I felt that if this were to be a successful event, we would need to incorporate lots of different elements into the day to attract a crowd of people who knew little about the disease. It was also my hope that we could offer something of hope & joy to these folks; a celebration of Claude's life rather than having them leave feeling hopeless and despair. So, I planned to make it entertaining, free and fun while at the same time, educational. The next thing that I needed was money…but I soon discovered that although businesses in my little town of Chillicothe were interested in helping me, they needed to give their money to someone with a 501-C3 tax-exempt number. Not a problem, I figured & called various area support groups asking for their help with this problem. But  none was forthcoming. I remember thinking as I spoke with my friend, Don White, about the possibility of getting that tax status for myself-"Oh God, what we need now is a miracle." As he went about the business of telling me all that was involved  (in time & paperwork), I realized that we could never pull it off this year. He finished up his little briefing with: "Joan, what you need is a miracle." So much for the best-laid plans… The next day, I indulged in a bit of self-pity, raging to the PD listserver  that I couldn't for the life of me figure out what to do now. Almost immediately came a reply to my posting from Margaret Tuchman from the Parkinson Alliance. When we spoke on the phone with her later that same day-I knew that I had my miracle!

The next day, when I went to see Don and took him the glossy brochure that Margaret Tuchman had sent over night to me, he agreed that I must have some divine intervention!! I knew from that moment, that I had the Lord's blessing on my projects. After that, things just seemed to fall in place for us: we got permission to use the beautiful clubhouse at Shore Acres Park, a  lovely Tara-like mansion on the banks of the Illinois River. I secured the time and talents of my friend, Preston Jackson-a very talented and well-known artist who also plays jazz guitar. A girlfriend, Connie Hellmann who is a terrific local caterer  volunteered her time to prepare a buffet for only the cost of food. Friends from the internet chatroom all sent in squares to make an afghan to be raffled at the exhibit and another friend-Gina Morss from WEEK-TV 25 agreed to be the hostess.

As the day approached, we had many discussions about how to hang the art & the photographs. It was finally agreed upon that they  would be suspended by wire to hang at eye level from the balcony. This idea was not only practical but it gave the exhibit a somewhat surreal feeling as if the art was floating. When my friends and fellow parkies began to come to town for the event, it  finally dawned on me: "We're going to pull this off!"  One of the hardest things that I had to learn to do was how to ask for money. I had never before delved into fund-raising and I guess I had to learn the hard way the little “tricks of the trade!” But I was determined and too dumb to know any better the old “bull in a china shop “ story. As my plans became more involved, so of course, did my budgetary needs increase.

I went to all of the places here in my little town of Chillicothe. I asked my sisters to ask their bosses and my friends to do the same.  Using the Parkinson Alliance name and their tax-number gave me credibility and a boldness that surprised even me! Soon, I  had a working budget of $1,000 and believe it or not-had $1,000 in donations! My focus for this event was to raise awareness  and I think we accomplished this goal. Karen Moewe, the editor of our local newspaper was extremely helpful in getting the word out. She had been the author of two very moving stories about my pallidotomies, so she was not only sympathetic, but  also very much aware of the drive that I feel to do something about this disease while I am still able. Another invaluable friend  has always been Gina Morss, a newscaster from our local NBC affiliate, WEEK-TV. She had been doing stories about me since my surgeries and was extremely helpful –lining up TV guest appearances and volunteering to serve as our hostess at the exhibit I will always be grateful to these two women, who have been with me from the start. It was in these whirlwind days before the scheduled date of Sunday, April 11th, that I was able to appear before the City Council Of Chillicothe, Illinois and have the mayor declare in a proclamation the date of the exhibit as “Local Parkinson’s Awareness Day.” This proclamation was printed in the newspaper. Jane Scott and I were also invited to address the Optimist’s Club at their monthly breakfast.

Anyone who knows me knows that if I am involved in something-it must include music and food. I wanted nothing to take away from the impact of the art yet, I wanted to make the event into a celebration of the life of Claude Scott and Jane and Marc agreed. I spoke to my old friend, a well-known and respected artist and also a wonderfully talented jazz guitarist, Preston  Jackson, who was enthusiastic about the entire project. He suggested that a small combo would be just what I needed-playing next to the main exhibit room. He agreed to play for a small stipend to cover travel expenses for his drummer. I enlisted the  aid of Connie Hellman, an old friend and the owner of “A Matter of Taste” catering. Without hesitation, she also signed up to  prepare and to serve the food. Many other wonderful people also donated food, cakes, paper products and time to make this dream of mine become a reality. The members of the PWP (People With Parkinson’s) Dumpster Gang Chatroom proved to be my sounding board and my support during all of this planning and preparation…and when the time came, they came-from North Carolina: my dear friend Sandra Norris (aka sassy); from Pennsylvania, my dear buddy Joyce Ferree (aka jazzy); my quiet friend from Indiana, Ken Hayes and his lovely wife Judy. God, they say, is in the details and we buried ourselves in those  as the day approached: we needed a guest book, corsages, informational pamphlets to display, a scrapbook with all of the articles leading up to this day, a sign listing the sponsors, and a flock of servers (provided by my 5th grade daughter’s classmates) and the hundreds of little things that you just might (you never know) really need! Thank goodness for the friends who got me through this part of the process! Sunday, April 11th, dawned briskly cold and gray. The first thing that we saw as we reached the beautiful southern mansion-type home-turned-into-a-clubhouse was the bright blue & gold sign hung from the balconies on the front of the building that I had borrowed from the APDA. Nothing, but nothing was going to spoil our day.

We entered into the main hall and saw the paintings & photographs as we had left them-but this day they seemed to look somehow ethereal. We busily began setting up the kitchen, the buffet, the information tables and the reception table. And just  as we finished people began to arrive.