Disgusting Delay

It is pathetic that I had an amazing experience at the Narcolepsy Network Conference, and THEN I don't write anything about it for almost a week. I also know that I won't actually be able to "catch up" tonight. Still, I knew that I had to relay at least some of the magic that the weekend brought. The weirdest thing is that the "slump" I was in the few weeks before the conference, definitely continued this week. In fact, my co-teachers sent me home on Monday. I was glad that they did, and I now know that I will need to ask for the day after the conference every time that I attend it (which I hope will be a yearly occurrence). Sadly, though, I have remained "off" the entire week. Some of it is simply fatigue. The other problem is that our grades were also due this week. Thus, I killed myself on Tuesday night (and Wednesday morning). I am glad, though, that other than one meltdown, I did hold it together. Much of that should be attributed to the residual joy of the weekend!

As I predicted, nothing could have prepared me for how much I would enjoy the weekend. I knew it would be incredible, and yet the it exceeded my wildest expectations. The amount that I learned in the keynote session alone blew my mind. Mr. Mignot, who runs the lab at Stanford and has had a hand in every major narcolepsy discovery in the last fifteen years, presented preliminary data that points to a clear understanding of the mechanism of narcolepsy's cause. It might not do much good for people who already have narcolepsy, but it will help in developing treatment. It could also mean a reduction in cases. Basically, Dr. Mignot has found a second gene that is involved in narcolepsy. The protein that it controls works in the autoimmune system like a glove to HLA's hand. Researchers already knew that HLA was involved in the destruction of the hypocretin producing cells in the hypothalmus. If Dr. Mignot is right, and this other gene is also involved, he may have proven that narcolepsy is an autoimmune disease. The other element he seems to have undercovered is that a person with these genes needs to experience an intense viral infection for the genes to be activated. Since I have had mono four times, I find that fascinating. I will definitely write more about this in a later entry, but suffice it to say, my knowledge of narcolepsy grew exponentially every second of the conference.

That said, the best part of the conference was meeting other PWNs. The information paled in comparison. Some people at the conference, I have known for quite some time. There were four people from the Minnesota MOONS group also attending the conference. I loved the chance to spend time with them over the three days. I also knew a number of people at the conference from spending time on narcolepsy forums through Facebook, MySpace and the Narcolepsy Network site. To meet them face-to-face, though, was truly breath-taking. Individuals who have been a major part of my life (some of them daily) during the past seven months suddenly appeared before me as flesh and blood. It was glorious. Even better, they are now even more firmly my friends. Even better, though, I made a number of friends who had never been a part of my life before Friday night. Whether it is the young man from Great Britain who battled his government to get the medicine that he needs or the loving dad from Wisconsin who wants to manage his narcolepsy so he can love his children as best he can, I found myself awed by the stories, the people, the love and the determination. People with narcolepsy live lives of meaning and purpose. They treasure each second because sleepiness is always around the next corner.

Having said all of this, the highlight of my weekend was getting a chance to have a much better understanding and insight into someone I deeply respect. The physician who co-leads our Minnesota support group is brilliant. She had to be one of the most sought out people throughout the weekend. I don't know if I have ever met a physician who more clearly personifies compassion and commitment. What made my time with her so wonderful, ironically, is that we interacted as friends. While I have no doubt that she is the best neurologist in Minnesota (and likely the midwest), particularly in terms of sleep issues, I don't want her to be my doctor. I would much rather have her be my friend. The entire experience made the weekend phenomenal. I am grateful for every second.