I have tried to write this post for over a week. I've started, stopped, and then moved on to other topics--fun topics, travel topics, warm fuzzy topics. This topic is all about Hope, a concept I saw in action on Saturday, April 17, 2010.

On April 15th I boarded an American Eagle flight from KC to Chicago (Thank God, no surly personnel encounters this time!). While I moved to Kansas City in 1971, my mother, brother, and sister and their families still live in the North Shore suburbs of the Windy City (and we all know why Chicago is called the Windy City, right? Actually, there are 3 theories of the origin of that label  http://en.wikipedia.org/wiki/Origin_of_the_name_"Windy_City").

My mom is 92, almost 92 1/2. I add the 1/2 because dementia has turned my once vibrant, well-read, and ardent card-carrying Democrat mother into a petulant child and children always count 1/2 birthdays. Mom still lives at home with excellent full-time care. Recently, at the urging my sister and sister-in-law, I've increased my visits to see my mom to every 4 to 6 weeks. Instead of dreading the visits because of the pain of watching how dementia robs a person of their essence, I've come to look forward to my visits. Mom is always glad to see me. In fact sHe re-experiences this joy many times during my visit because, when I walk out of the room and then back in, she thinks I've just arrived. Funny? Sure. Sad? Immensely so!

There is another benefit of my visits--connecting with my brother, sister, and my BFF, Caryn. I timed my April trip to coincide with a show of wearable art, organized and run by my sister-in-law, Kathy and her friend Linda (http://artwearunlimited.com/). Bookmark the website to watch for the date of the Fall/Winter Show--incredible!My sister, NanC, a world renowned bead artist, displays some of her creations at the show (http://nancmeinhardt.com/). So, I scored a trifecta-seeing NanC, Kathy, and buying some of NanC's beautiful jewelry!  

Now for what hope looks like: my brother, Ron, has Parkinson's Disease. I remember him saying "I have Parkinson's. Parkinson's doesn't have me!" For over 12 years Ron's body has slowly stiffened and he shared with me that his condition has deteriorated rapidly the past 12 to 18 months. Ron is a jokester, an avid sports fan, and barks orders better than an Army sergeant, all of which I've translated as, "I won't share my feelings with you but I will be entertaining." On Friday, April 16th, I visited with my brother. He was watching a Cub's game on TV, told me to get the mail when he saw the letter carrier arrive, and then sorted through the mail as if I wasn't there-all par for the course! Then I asked a question:

"Ron, if your Parkinson's Disease Support Group meets tomorrow, may I take you there?" And the door to the inner workings of my brother cracked open a sliver! "Yes," the group was meeting and "Yes" I could be the wheels. So, at 8:45 AM I picked up my brother to go to the meeting. Kathy had a pile of things for us to take because after the meeting, I was taking Ron to meet friends to go to a Cubs game, of course! Cubs jacket-check, Cubs hat-check, medicine-check, wheelchair-check and off we went.

As we drove to the church where the group meets twice monthly, Ron profiled some of the regular members; and as he talked, I slowly entered another world, the world of Ron, a Parkinson's Disease patient. Participating in the meeting, I felt an ocean of emotions which hit "shore" two hours later. Sitting at O'Hare Airport awaiting my flight home, I shared my impressions by phone with my husband back in KC. The first emotions - sadness, fear and anger - came out in tears as I described the morning's experience. What followed surprised me: I came face-to-face with one  my own core reactions about disabilities, Pity. Then came the freeing gift: Ron's group gave me something very powerful, Hope.

Currently, there is no cure for Parkinson's, it's progression slowed but not ever stopped. Yet, I had the gift of spending time with a group of people who exuded hope. For many of them, just getting to the meeting was an ordeal, and they came anyway. They shared their experience, their medication regimens, and any recent news of research, meetings, or media exposure. They also shared something else, a clear message for all of us: LIVE today, ACT today, BE today. Together they could give each other much needed support, the support of "I know and I understand." They spent the first few minutes doing seated exercises because TODAY exercise is important. They shared anecdotes and often laughed because TODAY laughter is important. And, all of them, went on to whatever activities they had planned for Saturday afternoon because TODAY activities say, "I have Parkinson's; Parkinson's doesn't have me." So, Ron went to the Cubs game, probably overexerting himself taxing his body, and he had HOPE, Hope the Cubs would win and HOPE that he would live fully TODAY. Thank you, Ron, for teaching me to live without Pity (self or other) and to live with purpose, with HOPE.