Mighty MOONS

I just got back from my second MOONS meeting (I figure I can't count the Planning Meeting/suburban shopping nightmare). Even though I knew it would be better than I was expecting, the experience blew me away again. The group interacted even more and is clearly beginning to connect on deeper levels. In fact, the meeting devolved at the end into a series of small conversations which was beautiful to see. Lots of people were having "A-ha" moments throughout the room. The weirdest part is that we never got to the featured speaker. A member of MOONS was going to tell her story, focusing specifically on her pregnancy. But, I think even she would say that things went great. Actually, she is excited to have two more months to use for further development of her material.

Dr. Rogers opened the meeting with a plug for the Narcolepsy Network National Conference being held in Milwaukee, WI from October 3 to October 5. Since I am already registered to go, I brought my flier for it and was able to give it to a wonderful woman sitting next to me. She is now in her 80s, but didn't learn about her narcolepsy until she was 60. She spent most of her life battling this disease and didn't even know it. That is incredible. I was also thrilled to see that a number of the other MOONS folks are considering the conference or are already planning to go.

Dr. Rogers then made an earnest pitch for assistance. She and Charlie, the narcoleptic who has been helping her, know that they can't do this alone. In fact, both of them felt under prepared for this meeting simply because life in general can move too fast. I did find out that the "planning meeting" in July did happen. Dr. Rogers and one other person made it. Turns out I was in the right place, but either got there after they left or before they arrived. The good part is that lots of people are excited to help now. We do have a planning meeting scheduled for three weeks from now. I plan to go and brave shopping madness again. This time, I will work to arrive early and stay until someone shows up. We also set a new date for the next large group meeting. We didn't know it at the time, but we will listen in November to a group member speak about her life with narcolepsy and her pregnancy (that of course is the tabled speaker from today's meeting).

What got us "off track" was some incredible information from Dr. Rogers about tracking your own medical records. It is a good idea to have your own set no matter what your health is like, but it is imperative for people with chronic conditions. By doing so, you can catch errors and be able to clarify your condition for new doctors. Many of us had input as we moved through the material. I have kept my own records for the past four years, but I learned tons of new things to include. I also got to plug (a couple of times) acupuncture and my favorite chiropractic clinic in the whole world - Langford Chiropractic! Apparently, Dr. Rogers has been taking an acupuncture course and realized that Chinese medicine has treatments for narcolepsy, but discuss it as chronic fatigue syndrome. I shared my experiences as did others.

Once again, though, the best part of the meeting was chatting with others at the end of it. Two of my former students were there, and it was great to connect with Charlie again. I wrote a note to Dr. Rogers offering my assistance. Slowly, some people trickled out, but a group of us stayed until nearly 1 PM. Then, we decided to go get food together. We ate across the street and continued sharing stories and insights until nearly 3 PM. As I said earlier, I knew the day would exceed my expectations, but even in my wildest dreams, I never saw myself at lunch with five other narcoleptics (and one spouse and one baby). I only have to wait three weeks for the planning meeting. AND, it is only four weeks until the conference in Milwaukee. If lunch with five other narcoleptics is this cool, my brain reels with the possibilities of having a meal with two hundred narcoleptics.

I also feel great today because I know that I can help. I have no plans to try to do everything, but I certainly will be an asset and benefot myself and others. Just talking to the older woman and her husband today, I gave them some new ideas. I also provided some insights to another woman whose husband has narcolepsy. With school starting well and feeling managable, my wife getting her new job, and me working to stay balance, I am filled with joy at the potential for a good year ahead. I certainly know that my narcolepsy and fatigue will not go away, but I am more hopeful than ever that I can take each day as it comes and appreciate the upside, rather than dwelling on the mishaps.