>One of the problems when you are overly effusive in your praise is that you have no linguistic outlet when something grossly outpaces your frame of reference. Thus, you return to simple statements. Today has been the best day I have had in a long time. The MOONS meeting I attended today was better than I could have ever expected. While I was excited at the prospect of meeting others who “get it,” I figured that the event would be good, but not life-changing. I love it when I am this wrong.
In typical fashion of late, I was…late. I once again missed my 1 AM dose of Xyrem. I took it at 2:30 AM. The irony this time is that I know I woke up to the alarm. I even took my methylphenidate ER tablet. But somehow, I passed out before getting to the Xyrem. As a result, I struggled to get up and still needed to pack for my trip to Osakis. I also made the decision to swing by ultimate practice to drop off my check for jerseys. Brilliant! I know that I will some day realize that humans without sleep disorders don’t try to cram all of those things into a morning, and I will finally cut myself some slack. Sadly, it was not today.
Even with all of that chaos, I made it to the meeting by 10:15 AM. Things had not started, and I was met in the hall by a wonderful woman who turned out to be Dr. Eve Rogers, the physician who is co-organizing the group. We started and the young man who has been the driving force behind this effort outlined the ideas and basics. He also provided us with a great survey to explore what we want out of the group. Then, we moved on to our featured speaker, Elizabeth Nager – a therapist who specializes in patients with chronic illness. She only manages to get through a fourth of her prepared talk because people were so engaged with what she said and wanted to explore every idea more. I could feel the relief in the room and in myself as each of us realized that we were not crazy. In fact, we all heard, some folks for the first time, that the emotions and experiences of our lives with narcolepsy were normal and natural, specifically because narcolepsy is a chronic and invisible condition. The best thing is that she is willing to return to “finish” her talk. While I have know for years the importance of my own therapy, it was glorious to watch others make that same realization.
Although we had almost reached the end of the meeting, Dr. Rogers presented a plethora of fascinating material relating to new discoveries about sleep and an upcoming sleep conference. She also shared that the American Academy of Sleep Physicians declared in December of 2007 that modafinil (Provigil) and sodium oxybate (Xyrem). That is a vital piece of information that many narcoleptics can use to leverage their insurance company to pay for the meds that they need. I was in the presence of a physician placing patients well ahead of insurance and financial needs. Amazing!
Finally, as the meeting broke up, a few of us still hovered. A young woman and I shared our connection with Dr. Rogers and the organizer. We each chatted a bit about our own experiences and histories. We continued the dialogue in the elevator and all of the way to the parking ramp. The meeting ended just after Noon and the three of us didn’t break up until 12:45. Then, the organizer and I traded more stories standing in the parking ramp until 1:25! I definitely made a new friend. I am also ecstatic to have found a genuine outlet for my desire to help myself and other narcoleptics. I can’t wait until the planning meeting in July. I also think that MOONS can become a fantastic outlet for many of the narcoleptics in the Twin Cities.
As I drove away, I knew peace. I felt a deep satisfaction that I know will provide me energy and strength in my darker moments. I also know that it helped on my drive from Saint Louis Park to Alexandria. Two plus hours in the car – alone – is not always the best idea for narcoleptic, but I made the trip without a hitch. My friends the Barenaked Ladies and Mike Doughty helped me a great deal, but I also know that the energy filling me from MOONS factored in as well. I even know that I will be going to the September 6th meeting – even if it means that I need to miss the Heavyweights Tournament for tba (and it does). While I will be sad to miss out on a great ultimate tourney, I would be even more disappointed to not be a part of this incredible organization. I am even hoping to convince folks that we should offer smaller monthly gathering around the Twin Cities at which people can share their stories and simply connect. Heck, after today, I might even consider join the Narcolepsy Network and attending the national convention in October – it is in Milwaukee.
I am blessed in many ways, but the gift of today has been beyond the pale. To top it all off, I am in a hotel in Alexandria, MN hours away from watching one of my all time favorite students and friends graduate from high school. I am not sure why, but clearly God has decided to shower me with love (of course, I might have passed on the whole having narcolepsy part, but heck even that has its moments). In case you did not guess, I will likely write more (MUCH more) about MOONS. Just though I should warn you.