I awoke this morning in a huge hotel room. The national Narcolepsy Network patient conference begins today in Jacksonville, Florida; I arrived late last night (technically, early this morning). While I remain uneasy about being here, I must confess that my beautiful view of the Saint John's River certainly makes me glad for the break from my daily grind. I also know that I will enjoy many aspects of the conference. Hopefully, I deepen some of the friendships with other PWNs that I began at last year's conference. And, many new PWNs await me as well.
At the same time I could not help feeling loss and regret as I ate during my layover in Atlanta. More than anything, I want to help and connect with other PWNs. While this blog does that, my primary outlet for the past year has been the Narcolepsy Network forums. At least it was until mid-September. I deeply believe that the work of some dear friends in those forums is a huge reason for Narcolepsy Network's recent upswing in membership. Certainly, the number of people using the forums exploded during the last year, but I also know that Narcolepsy Network saw tremendous growth in paid memberships during that time as well. Unfortunately, the people most responsible for making the forums a welcoming and safe place for PWNs will not be with at this conference, nor do they oversee the forums any longer. I remain utterly bewildered as to how the people running Narcolepsy Network could be so obtuse as to not understand the vital role that those forums and individuals have played in the organizations sudden expansion.
The crux of it all for me is that I see the internet as a PWN's most vital tool. Few of us are able to find doctors who truly understand our condition. Although many larger areas do have local support groups, most PWNs need far more connection than a few meetings a year can give. Those factors, added to the reality that many PWNs literally know no one who has their condition until they find a support group (if they can find one), mean that the internet is the one location that a PWN can interact with other PWNs on a consistent basis. Up until mid-September, I would have believe that such a reality was obvious to everyone associated with Narcolepsy Network. Now, though, I have serious doubts.
My experience at last year's national conference was incredible. Certainly, being some place where I knew that 300 other people truly "understood" narcolepsy was a primary component of my joy, but far more significant was meeting face-to-face with many of the people that I had meet online. I am guessing that I will have a similar reaction this year. But, what vexes me to no end is that I doubt that other PWNs will get to have that opportunity in years to come. Since things changed on the Narcolepsy Network forums, I do not see the same level of interaction and vitality there. In fact, it is strange to see that in August the forums were adding 20 new members within 2 to 3 days, but now it might take a week or more to add 20 people. My observation is not researched or vetted, but it definitely seems like the energy in the forums is diminishing.
Clearly, I would love to see my friends back running the Narcolepsy Network forums, but deeper than that I honestly saw those forums as a way to improve significantly life for other PWNs. So many of us struggle to interact with the world because our enery is so limited. But, going online takes far less effort, and one need not drive somewhere to do it. I left my position as a moderator on the forums because of the way my friends had been treated, but I also did it because I did not (and still do not) trust the decision-making of the current board when it comes to Narcolepsy Network's online presence. If they honestly had no idea how active and energetic their forums were, it is a sad reality. Certainly, many other online support groups for narcolepsy exist, but Narcolepsy Network's advantage was (and still is if someone can right the ship) that they are a federally recognized non-profit with a national convention. Adding a strong and lively online community to that would make them the best resource anywhere for people with narcolepsy. Now, I wonder what will happen.
Of course, I could be crazy. Narcolepsy Network might have thrived in the past year due to some other reason. Only time will tell. Also, the other support groups, particularly the Facebook Narcolepsy Support Group and a new site Bite Size Life, might adequately fill any void created by the changes at Narcolepsy Network's forums. Another definite possibility is a group in Second Life called Slumber Society. In the end, though, I need something for me. Selfishly (which I need to make a priority more often for myself), I need to find something that will give me the same fulfillment that my moderating on the Narcolepsy Network forums. Yes, I could "ask" to become a moderator for Narcolepsy Network again, but I will not work for the people currently "in charge" of the forums. As far as I am concerned, they haven't a clue about running a forum effectively. I also know that I can't afford to put in the energy that I did over the past year only to have it ripped away again. Thus, I find myself in limbo. I need to help other PWNs; it is something I do well. But, I also am struggling with my own energy so much that I do not have the time to figure out where to put my (currently non-existent) "narcolepsy support" energy. Time will eventually guide me in the correct direction, and I have learned enough to allow myself to trust the process. Unfortunately, that does not lighten my current mood, nor does it mitigate the hurt that I still feel from the events in September. Still, I know this chapter is just one more lesson that narcolepsy has for me to learn.
Showing posts with label Education. Show all posts
Showing posts with label Education. Show all posts
Friday, October 23, 2009
Sunday, October 18, 2009
Tired and Troubled
Somehow, I have managed to let another month pass without posting. Writing about this crazy condition is vitally important to me, but the "basics" of my life have felt horribly overwhelming. I also think that either my narcolepsy is intensifying, or my amphetamine is diminishing in its impact. of course, there is actually no way to determine that. All I know is that I have continued to "cut back" what I do, and I still find it harder to do this lightened load - which I find horribly frustrating.
My school year is actually going well. I have been better about correcting and more prepared for my teaching. I am also doing a better job of limiting myself to my part-time hours, rather than spending excessive amounts of time at school (well outside of my contract time). That being said, the year has also been tremendously draining. Our teaching team was tremendously successful last year, but I think we are all feeling pressure to be "better." While I think we are doing that, we are putting stress on ourselves. We have also developed a new approach to homework. It works well for many of our students, but two groups are struggling. Our students with poor time management skills are not spacing out their work and turn in poorly done materials. On the other hand, our overachieving students have been trying to do two to three hours of homework each night. Our expectation is that student would spend two to three hours maximum per week. As a result, we faced a number of questions at conferences from parents and guardians. Thankfully, most of them accepted our explanation, but a few still felt like we should change what we are doing because their daughter or son was continuing to do two to three hours per night. I am empathetic, but fail to see how we are causing the problem.
The other thing contributing to my struggles is the bizarre course of events over the last two months in my house. Our September had more activities and events that I can ever remember us having. The worst weekend involved my wife getting me at school at 2:45 PM on a Friday. We spent the next three hours and thirteen minutes traveling to Duluth (a trip that should take about two hours). We arrived for a family wedding with two minutes to spare (literally). Then, we checked into the hotel and attended the reception. I then got up early the next morning to drive my daughter back to the Saint Paul for a voice lesson. It was her first lesson, and the directions given by the organization were flawed to say the least. We managed to arrive only two minutes late for the voice lesson, but the stress of it all buried me. My wife had stayed in Duluth. When she returned on Sunday, I was still recovering, but there was a tremendous amount of work that needed to be done. I pushed myself to do it, and I exploded at my family. Then, I got to school on Monday so exhausted that my team members sent me home. It has been rocky since then, but is finally beginning to level out.
In the midst of all of that, my relationship with Narcolepsy Network turned markedly sour. They let their web master go and cut those of us who were moderators from access to the primary tool that we used to help moderate the site. When I emailed to express my disappointment in the entire situation, I received two emails. One was heartfelt and personal, explaining that I was a valued resource. The other was a generic message to all of the current moderators, saying essentially the same thing. Unfortunately for Narcolepsy Network, they thought the first version of the generic message to me did not work, and thus they forwarded the template. Because of that I learned that they had sent the same message to two moderators who had done nothing for over six months. Both of those individuals had been alienated by the inaction and the rude comments of board members. I then wrote an even more terse email questioning how they could "value" my work when they clearly had no idea what moderators were active and which were not. The sad reality is that many of the board members STILL have not gone to the forums, even after the things that took place. As a result of it all, I have done little online posting - at Narcolepsy Network or on Facebook. I am even struggling to do work for my local support group (which I essentially help to run). I just hate the idea of spending hours working on things, only to have some uninformed baord member swoop in and yank it away. Much of my frustration with the Narcolepsy Network centers on a new website that the web master was developing. He had is essentially ready to go live last November, but the board would never approve it. I personally spent well over 20 to 30 hours writing and editing content for the site, but never heard anything from the board, particularly the ones who were supposed to be overseeing the site. The even more irritating part is that while the new site was constantly being labeled as "un-ready," the current Narcolepsy Network site was live and contained far more errors and inaccuracies than the "un-ready" site. Because the web master is my friend, I stuck with the process, hoping that we would eventually be given approval. Instead, they fired him. Certainly, there may be legitimate reasons for what they did, although I have serious doubts. Even more unbelievable is that after hearing nothing about my work for the site, or about the quality of my writing, I received praise from three board members and a couple of employees of Narcolepsy Network.
I still want to "help" others with narcolepsy, but my own struggles are making it hard. I am heading to the national convention for Narcolepsy Network at the end of this week. I do plan to touch base with one member of the board to see if I can learn more about everything that happened. At the same time I remain unimpressed by the things I continue to see from Narcolepsy Network. For instance, even though I have clearly stated that I am not "helping" them at this time, I am STILL receiving emails from the people planning the conference. Today's series of emails was wonderfully ironic. Since all of the forum moderators "resigned" (after we were cut off), the board is hoping to find "motivated moderators" for the forums. Someone came up with the line, "We want MM for NN" - with "MM" refering to "motivated moderators." Since my initials ARE MM, I was sorely tempted to respond to the email, "You had MM, but chose to get rid of him," but felt like it would be sour grapes. In the end, it drives me crazy that the one national organization for people with narcolepsy seems to be clueless when it comes to growing the organization and to helping the vast number of PWNs who are searching for a lifeline while they are online.
My school year is actually going well. I have been better about correcting and more prepared for my teaching. I am also doing a better job of limiting myself to my part-time hours, rather than spending excessive amounts of time at school (well outside of my contract time). That being said, the year has also been tremendously draining. Our teaching team was tremendously successful last year, but I think we are all feeling pressure to be "better." While I think we are doing that, we are putting stress on ourselves. We have also developed a new approach to homework. It works well for many of our students, but two groups are struggling. Our students with poor time management skills are not spacing out their work and turn in poorly done materials. On the other hand, our overachieving students have been trying to do two to three hours of homework each night. Our expectation is that student would spend two to three hours maximum per week. As a result, we faced a number of questions at conferences from parents and guardians. Thankfully, most of them accepted our explanation, but a few still felt like we should change what we are doing because their daughter or son was continuing to do two to three hours per night. I am empathetic, but fail to see how we are causing the problem.
The other thing contributing to my struggles is the bizarre course of events over the last two months in my house. Our September had more activities and events that I can ever remember us having. The worst weekend involved my wife getting me at school at 2:45 PM on a Friday. We spent the next three hours and thirteen minutes traveling to Duluth (a trip that should take about two hours). We arrived for a family wedding with two minutes to spare (literally). Then, we checked into the hotel and attended the reception. I then got up early the next morning to drive my daughter back to the Saint Paul for a voice lesson. It was her first lesson, and the directions given by the organization were flawed to say the least. We managed to arrive only two minutes late for the voice lesson, but the stress of it all buried me. My wife had stayed in Duluth. When she returned on Sunday, I was still recovering, but there was a tremendous amount of work that needed to be done. I pushed myself to do it, and I exploded at my family. Then, I got to school on Monday so exhausted that my team members sent me home. It has been rocky since then, but is finally beginning to level out.
In the midst of all of that, my relationship with Narcolepsy Network turned markedly sour. They let their web master go and cut those of us who were moderators from access to the primary tool that we used to help moderate the site. When I emailed to express my disappointment in the entire situation, I received two emails. One was heartfelt and personal, explaining that I was a valued resource. The other was a generic message to all of the current moderators, saying essentially the same thing. Unfortunately for Narcolepsy Network, they thought the first version of the generic message to me did not work, and thus they forwarded the template. Because of that I learned that they had sent the same message to two moderators who had done nothing for over six months. Both of those individuals had been alienated by the inaction and the rude comments of board members. I then wrote an even more terse email questioning how they could "value" my work when they clearly had no idea what moderators were active and which were not. The sad reality is that many of the board members STILL have not gone to the forums, even after the things that took place. As a result of it all, I have done little online posting - at Narcolepsy Network or on Facebook. I am even struggling to do work for my local support group (which I essentially help to run). I just hate the idea of spending hours working on things, only to have some uninformed baord member swoop in and yank it away. Much of my frustration with the Narcolepsy Network centers on a new website that the web master was developing. He had is essentially ready to go live last November, but the board would never approve it. I personally spent well over 20 to 30 hours writing and editing content for the site, but never heard anything from the board, particularly the ones who were supposed to be overseeing the site. The even more irritating part is that while the new site was constantly being labeled as "un-ready," the current Narcolepsy Network site was live and contained far more errors and inaccuracies than the "un-ready" site. Because the web master is my friend, I stuck with the process, hoping that we would eventually be given approval. Instead, they fired him. Certainly, there may be legitimate reasons for what they did, although I have serious doubts. Even more unbelievable is that after hearing nothing about my work for the site, or about the quality of my writing, I received praise from three board members and a couple of employees of Narcolepsy Network.
I still want to "help" others with narcolepsy, but my own struggles are making it hard. I am heading to the national convention for Narcolepsy Network at the end of this week. I do plan to touch base with one member of the board to see if I can learn more about everything that happened. At the same time I remain unimpressed by the things I continue to see from Narcolepsy Network. For instance, even though I have clearly stated that I am not "helping" them at this time, I am STILL receiving emails from the people planning the conference. Today's series of emails was wonderfully ironic. Since all of the forum moderators "resigned" (after we were cut off), the board is hoping to find "motivated moderators" for the forums. Someone came up with the line, "We want MM for NN" - with "MM" refering to "motivated moderators." Since my initials ARE MM, I was sorely tempted to respond to the email, "You had MM, but chose to get rid of him," but felt like it would be sour grapes. In the end, it drives me crazy that the one national organization for people with narcolepsy seems to be clueless when it comes to growing the organization and to helping the vast number of PWNs who are searching for a lifeline while they are online.
Sunday, September 13, 2009
Missing Month
Somehow, I managed to write nothing in my blog for over a month. While the vacation did require some post-trip recovery, a number of other things contributed to my disappearance. First and foremost, the lovely world of Wii sucked me into it. My daughter's purchase of Animal Crossing has definitely been a curse and a blessing. I love the game and have been quite successful, but WOW does it suck up time. Beyond that, I have been attempting to get back into some type of rhythm because I have already experienced two weeks of teaching. Certainly, doing my best to prep for the start of school also ate up time. Our strategic planning process was fascinating this summer, but taxed me beyond belief. More than anything, I have had a difficult time maintaining a consistent level of energy. On that note, I must get into bed. I actually had three nights in a row at the end of last week when I took only one dose of Xyrem. Such situations will not get me back into a regular routine anytime soon.
Before I go, though, I need to acknowledge to things. One, I have had a difficult and trying weekend due to moronic decisions made by the board of Narcolepsy Network. I will be attending their national conference in October, but sadly my relationship with them is likely ending. I have no doubt that I will blog about that soon. More importantly, I made a new friend on Facebook today. She actually knew me from Narcolepsy Network's forums, but we had never exchanged direct messages before. She shared some wonderful compliments with me, particularly that my blog had helped her when she was initially diagnosed. Although I had been working up the energy to get back to my writing, that interaction spurred me to post this. I love how PWNs can do so much for each other in such simple ways.
Before I go, though, I need to acknowledge to things. One, I have had a difficult and trying weekend due to moronic decisions made by the board of Narcolepsy Network. I will be attending their national conference in October, but sadly my relationship with them is likely ending. I have no doubt that I will blog about that soon. More importantly, I made a new friend on Facebook today. She actually knew me from Narcolepsy Network's forums, but we had never exchanged direct messages before. She shared some wonderful compliments with me, particularly that my blog had helped her when she was initially diagnosed. Although I had been working up the energy to get back to my writing, that interaction spurred me to post this. I love how PWNs can do so much for each other in such simple ways.
Saturday, July 25, 2009
Sluggish, but Sane
I chose not to push myself at all today. While I desperately want to be more productive, I knew after yesterday that I would be a fool to drive myself today. Thus, I got up slowly and thoroughly enjoyed the long "talk time" with my wife. It amazes me each week how wonderful it is just to spend time in honest conversation with her. I also know that those exchanges are a huge part of why my love for her deepens every day. After we finished, I attempted the crossword and finished the sudoku in the StarTribune. Then, I played some Animal Crossing, which is rapidly becoming my favorite mindless past time.
My wife asked me today how I can enjoy it because there is no "objective" to the game. But, I think that is what I like about it. Before my narcolepsy became intolerable, I enjoyed fishing. What was good about it for me is that I could sit and do nothing, but not get stressed out. Ordinarily, lounging causes me immense amounts of stress because my brain wants me to do things. In fact, it uses quiet times to inundate me with a myriad of unfinished tasks, but fishing WAS something. I could be focused on the process of casting and retrieving, blocking out the normal litany from my mind. Animal Crossing definitely fills a similar role, partly because I spend a decent amount of my time in the game fishing. I will need to be careful of my time with this one, but it is a good way for me to use my downtime in a restful way.
I did manage to help clean our kitchen. I even put away a few of the piles from our dining room table. Hopefully, I will have a bit more energy tomorrow. The most important aspect of the day, though, is that I am at peace with what I did and what I left undone. Much of my stress earlier this week centered on what I have not finished yet for this coming school year. The reality is that I still have time to get things done, and I am a part of an amazing team. We made significant strides on Thursday and Friday. I am willing to guess we will have even more success on this coming Thursday. I need to remember that I have already been more efficient this summer than I have been at any point in my teaching career. I still want to do more, and I will. But, I deserve congratulations for the work I have done thus far. Plus, it will do me no good to make myself sick well before the school year begins. Summer has to be about me regaining energy so I can be effective during the school year. I truly do not know what tomorrow will bring, but I will do my best to get one or two things done, and I will make sure that I continue to take the breaks that my body needs to rebuild my reserves.
My wife asked me today how I can enjoy it because there is no "objective" to the game. But, I think that is what I like about it. Before my narcolepsy became intolerable, I enjoyed fishing. What was good about it for me is that I could sit and do nothing, but not get stressed out. Ordinarily, lounging causes me immense amounts of stress because my brain wants me to do things. In fact, it uses quiet times to inundate me with a myriad of unfinished tasks, but fishing WAS something. I could be focused on the process of casting and retrieving, blocking out the normal litany from my mind. Animal Crossing definitely fills a similar role, partly because I spend a decent amount of my time in the game fishing. I will need to be careful of my time with this one, but it is a good way for me to use my downtime in a restful way.
I did manage to help clean our kitchen. I even put away a few of the piles from our dining room table. Hopefully, I will have a bit more energy tomorrow. The most important aspect of the day, though, is that I am at peace with what I did and what I left undone. Much of my stress earlier this week centered on what I have not finished yet for this coming school year. The reality is that I still have time to get things done, and I am a part of an amazing team. We made significant strides on Thursday and Friday. I am willing to guess we will have even more success on this coming Thursday. I need to remember that I have already been more efficient this summer than I have been at any point in my teaching career. I still want to do more, and I will. But, I deserve congratulations for the work I have done thus far. Plus, it will do me no good to make myself sick well before the school year begins. Summer has to be about me regaining energy so I can be effective during the school year. I truly do not know what tomorrow will bring, but I will do my best to get one or two things done, and I will make sure that I continue to take the breaks that my body needs to rebuild my reserves.
Thursday, July 16, 2009
Fighting Frustration
I have not slept well (or much) the last two nights. While that is NOT a good thing, my mood today is surprisingly upbeat. I know a piece of that is that I had a good meeting with my psychiatrist today. He is quite down-to-earth, but has also challenged me in the past to be kinder to myself. I think he easily saw today that I am definitely making progress in that regard. I also know that in that same vein, I am accepting that I have been up far too late the last two nights. Thus, the things that I accomplish today will be "gravy." I have to take that approach. I needed to stay up two nights ago to get some things done for MOONS-MN. Last night, the priority was getting the kitchen clean. That I did get those things done is a huge step for me. Hopefully, I will begin to keep such efforts within the frame work of "normal" hours for me, but it is also good that I am making strides in such areas.
Far too often, I get completely lost in "unstructured time." I definitely function best when my schedule forces me to be certain places at specific times. The rub, of course, is that having a ful agenda each day drains me far more than a day of relaxing. A huge piece of the equation is the fact that my brain rarely "shuts down." Summers are usually the worst because it can be weeks of "free time," during which my brain tries to run in hundreds of directions. Unable to accomplish a fractional percentage of my mind's inexhaustible list, I would then wallow entire days away. Although my aspirations remain far to large, I am getting better and better at releasing myself from that cycle. I work to accept my limits, while challenging myself to get one or two small things done. Slowly, I am adapting. Hopefully, it will continue, and I will stay balanced and healthy. I still remember the lessons of last summer. Every time I pushed too hard, my body quit as I ran a fever. I would like to avoid being completely laid out.
Far too often, I get completely lost in "unstructured time." I definitely function best when my schedule forces me to be certain places at specific times. The rub, of course, is that having a ful agenda each day drains me far more than a day of relaxing. A huge piece of the equation is the fact that my brain rarely "shuts down." Summers are usually the worst because it can be weeks of "free time," during which my brain tries to run in hundreds of directions. Unable to accomplish a fractional percentage of my mind's inexhaustible list, I would then wallow entire days away. Although my aspirations remain far to large, I am getting better and better at releasing myself from that cycle. I work to accept my limits, while challenging myself to get one or two small things done. Slowly, I am adapting. Hopefully, it will continue, and I will stay balanced and healthy. I still remember the lessons of last summer. Every time I pushed too hard, my body quit as I ran a fever. I would like to avoid being completely laid out.
Thursday, July 2, 2009
Blog Bonanza
My excitement went through the roof today. I learned of yet another blogger with narcolepsy. Narcogirl write Confessions of a Narcoleptic. Similar to the other blogs that have come on my radar lately, she approaches her blogging in the fashion that I do. She is using the blog as a place to record her thoughts and her experiences with narcolepsy. When I first started writing mine, I was so disheartened that I only found a few other people writing about their narcolepsy. I certainly love the forums I have found on Facebook and at the Narcolepsy Network site, but I adore the chance to read the more personal reflections that tend to populate narcolepsy blog posts.
I now have fourteen other blogs listed in my "Other Narcolepsy Blogs" blog roll. Not all of them are updated frequently (in fact some have not had a post in a year or two), but it is cool that the list is growing rather than shrinking. The fact that I have added six blogs within the last three weeks is even more incredible. And, a few of those new blogs do post at least once or twice a month. Narcogirl has started off at an impressive pace. As one who has gone through feast and famine in my own writing (one month with 19 posts, another with 3), I think it is great that anyone with narcolepsy takes a few moments here and there to post at all.
I truly see these others bloggers as gifts. The chance to write about my own experiences is phenomenally rewarding in and of itself, but few things benefit me more than the chance to learn another PWNs story. While no PWN has the same story or symptoms or medications, we can all relate to the insane experiences that others have with this crazy disease. Thus, finding other blogs help me to remember that I am not insane. I also love that other PWNs are willing to discuss their condition in a public setting. I hate the idea that I need to hide my condition. I certainly do not "like" my narcolepsy, but it impacts who I am. I don't want people to feel sorry for me, but I also do not want to deny that I am sleepy most of the time. It IS part of me.
I defintely hope that my list of other narcolepsy blogs continues to grow. I also hope that as more PWNs lift their voices and share their stories that we will all benefit from the expanding awareness that more blogs will bring. Please consider reading some of the blogs listed in my narcolepsy blog roll. It will be worth your time.
I now have fourteen other blogs listed in my "Other Narcolepsy Blogs" blog roll. Not all of them are updated frequently (in fact some have not had a post in a year or two), but it is cool that the list is growing rather than shrinking. The fact that I have added six blogs within the last three weeks is even more incredible. And, a few of those new blogs do post at least once or twice a month. Narcogirl has started off at an impressive pace. As one who has gone through feast and famine in my own writing (one month with 19 posts, another with 3), I think it is great that anyone with narcolepsy takes a few moments here and there to post at all.
I truly see these others bloggers as gifts. The chance to write about my own experiences is phenomenally rewarding in and of itself, but few things benefit me more than the chance to learn another PWNs story. While no PWN has the same story or symptoms or medications, we can all relate to the insane experiences that others have with this crazy disease. Thus, finding other blogs help me to remember that I am not insane. I also love that other PWNs are willing to discuss their condition in a public setting. I hate the idea that I need to hide my condition. I certainly do not "like" my narcolepsy, but it impacts who I am. I don't want people to feel sorry for me, but I also do not want to deny that I am sleepy most of the time. It IS part of me.
I defintely hope that my list of other narcolepsy blogs continues to grow. I also hope that as more PWNs lift their voices and share their stories that we will all benefit from the expanding awareness that more blogs will bring. Please consider reading some of the blogs listed in my narcolepsy blog roll. It will be worth your time.
Sunday, June 28, 2009
Wiped & washed out
I survived. In fact, I thrilled to a large extent. MITY wrapped up wonderfully. In many ways, my co-teacher and I were more on top of things this year than we have ever been. I truly believe that our class gave a tremendous reading. Each student delivered her or his best reading at the actual event. Plus, the book this year, while slightly smaller, seems to have better quality than ever before. I know that a piece of that is that I did more and better editing this year. Now, my brain constantly reminds me about the multitude of pieces that I did not provide feedback, but I definitely feel like I did the best that I could.
Perhaps the highlight of the session, though, came on our final day. I chose (and that is the truth) to stay awake as long as I could to get as much work as I could done. I eventually had to get into bed, and I did sleep for two hours. I knew that I was making a choice and that I would likely lose the weekend as a result of that choice, but I felt that it was worth it. As a result, we not only had the supplement (we make a book of the students work, abd then create a final "supplement" that has fun memories and a few more pieces by them held together with only a staple) ready, but we also had the 3 CD-ROMs (photos that I took, the book and supplement files, etc) burned, and I love the poem that I wrote for the class (that is not always the case). I also managed to be present for our students and truly enjoyed the final day of MITY this year.
Typically, I am a wreck for the final two to three days. I worry that we won't get the book together, then I worry about the reading, and then I obsess about what I have done and what I have not done for the last day. This year, we were ahead of the curve each step of the way. We dropped the book off earlier than we ever have, although I am still waiting to get it turned in on a Wednesday rather than a Thursday. The reading came together beautifully, and I know our final day was as good as it can get - the day will always be bittersweet because we all have to say good-bye. Perhaps, the final element that made this "closure" so complete for me is that my co-teacher and I had the room cleaned, the computers returned, and our keys turned in before 4:30 PM. Much of that had to do with the assistance that we recieved from our students, but it was breath-taking nonetheless.
I also think I am pleased with the way that MITY went this year because I see it as one more sign of the strides I am making in handling my narcolepsy. Of course I was tired and pushed too hard at times. I need to get a better grasp of what I can and cannot expect of myself during the middle weekend of MITY. I also need to remember that the transition from "regular" school to MITY will always be bumpy because it is a shift in my daily schedule - and my body does not "do" that well. But, I am clearly starting to let go of the things that I cannot control. I am allowing myself to release - over editing, over "undone" work, over insane expectations. The journey is long, but each day is another step. Which raises my final point of pride. It was at MITY a few years ago that I first began to recognize honestly my inability to live in the moment. Although I certainly am still four days ahead, or two years in the past, in any given moment, more and more I am grounding myself in the events unfolding before my eyes. The results could not be clearer. My days are richer, even when they are limited by my narcolepsy. I can't get everything done that I "want to," but I am accomplishing more each day than I ever did when my narcolepsy was "hidden." I regularly avoid direct self-praise, but I need to admit that even I am impressed by my improved efficiency.
Perhaps the highlight of the session, though, came on our final day. I chose (and that is the truth) to stay awake as long as I could to get as much work as I could done. I eventually had to get into bed, and I did sleep for two hours. I knew that I was making a choice and that I would likely lose the weekend as a result of that choice, but I felt that it was worth it. As a result, we not only had the supplement (we make a book of the students work, abd then create a final "supplement" that has fun memories and a few more pieces by them held together with only a staple) ready, but we also had the 3 CD-ROMs (photos that I took, the book and supplement files, etc) burned, and I love the poem that I wrote for the class (that is not always the case). I also managed to be present for our students and truly enjoyed the final day of MITY this year.
Typically, I am a wreck for the final two to three days. I worry that we won't get the book together, then I worry about the reading, and then I obsess about what I have done and what I have not done for the last day. This year, we were ahead of the curve each step of the way. We dropped the book off earlier than we ever have, although I am still waiting to get it turned in on a Wednesday rather than a Thursday. The reading came together beautifully, and I know our final day was as good as it can get - the day will always be bittersweet because we all have to say good-bye. Perhaps, the final element that made this "closure" so complete for me is that my co-teacher and I had the room cleaned, the computers returned, and our keys turned in before 4:30 PM. Much of that had to do with the assistance that we recieved from our students, but it was breath-taking nonetheless.
I also think I am pleased with the way that MITY went this year because I see it as one more sign of the strides I am making in handling my narcolepsy. Of course I was tired and pushed too hard at times. I need to get a better grasp of what I can and cannot expect of myself during the middle weekend of MITY. I also need to remember that the transition from "regular" school to MITY will always be bumpy because it is a shift in my daily schedule - and my body does not "do" that well. But, I am clearly starting to let go of the things that I cannot control. I am allowing myself to release - over editing, over "undone" work, over insane expectations. The journey is long, but each day is another step. Which raises my final point of pride. It was at MITY a few years ago that I first began to recognize honestly my inability to live in the moment. Although I certainly am still four days ahead, or two years in the past, in any given moment, more and more I am grounding myself in the events unfolding before my eyes. The results could not be clearer. My days are richer, even when they are limited by my narcolepsy. I can't get everything done that I "want to," but I am accomplishing more each day than I ever did when my narcolepsy was "hidden." I regularly avoid direct self-praise, but I need to admit that even I am impressed by my improved efficiency.
Friday, June 19, 2009
Museum Musings
I am sitting in the cafe at the Minneapolis Institute of Arts. Correction, I am being paid to sit in the cafe at the Minneapolis Institute of Arts. I am here with the students in my Minnesota Institute for Talent Youth students. My co-teacher and I have brought our students here each year for the past four. Usually, I am pacing the galleries, looking for our students to photograph them, and worrying that I am “not doing enough.” I do periodically take a few minutes stop to look at a piece of art, but so often in the past I have felt like I MUST be the “teacher” while I am here.
I know I am slowly coming to terms with myself and my narcolepsy when my immediate thought this year was, “hey, I can use the time at the MIA to unwind a bit.” Not only that, but also I felt no guilt in that thought. Thus, MITY is paying my to chill this afternoon. Even better, I definitely feel like I am earning that pay. My co-teacher and I spent time on campus and here framing the experience. We are getting the students into a different environment to provide new stimuli to inspire their work. And, quite honestly, whether I am sitting here, or if I were pacing the galleries, I would not be helping my students write. In fact, one could argue that my hover easily could do more harm than good.
Even as I typed that, I realized that one of my students just wandered past. The young women and men that I get to teach a MITY amaze me. Often, they have been treated with ridicule and disdain because their intellects frighten even their teachers. Thus, most of them have no idea how to feel supported, or welcomed, or appreciated. Also, because they tend to “get it,” at least intellectually, the wonderful young women and men do not know how to be kids. By letting them roam, we are giving them the gift of trust and respect. They certainly do not need me to watch their every move, nor do they need one more adult who makes them feel uncomfortable. I have no doubt that the approach which my co-teacher and I take in the classroom (by treating our students as brilliant and thoughtful young adults) is a huge piece of the success we have had over the years. I am grateful that I am beginning to find ways to bring that same attitude to our field trip.
It is just one more way that narcolepsy has proved to be a blessing, rather than a burden. The reality during the previous two trips to the MIA is that I HAD to rest for long periods. I felt guilty doing it – “I can't let MITY pay me to rest” – but it happened nonetheless. Bottom line, though, is that I will be far more effective tomorrow because I took this time to relax today. So much of managing my narcolepsy is letting go. I tire rapidly and stress increases the energy drain. By being hyperconscious at a museum, I exhaust myself and do a disservice to my students. Thus, I am allowing myself to appreciate the stillness today. Hopefully, I will continue to embrace the gifts and the frustrations that narcolepsy brings me on a daily basis.
On a tangential, but loosely related, note, my Wii experience continues to be productive. I have now found myself on at least two occasions dripping with sweat while grinning and laughing. I am clearly getting exercise (and finding genuine strength building in my legs), but I am also having fun. Both of those are vitally important to me living with my narcolepsy. My physical endurance has fallen precipitously over the past two years. It is the awful reality that time for exercise has remained a distant priority as I have been forced to choose where and when I exert myself. At the same time, I have pulled away from many of the things that do make me laugh. My ultimate team was a major highlight of my life, mostly for the joy and camaraderie that it brought me. Sadly, the declining nature of my physical condition stripped the fun out of ultimate. While part of the pleasure I take from using the Wii is laughing at how stupid my Mii looks at times, I am also spending far more time interacting with my daughter. I had dearly hoped that the Wii would be a bonding element for our little family. Things are definitely developing that way. Finally, even if the exercise and fun were not happening as well as they are, I am overjoyed that I am using the Wii to reconnect with yoga. Primarily the “yoga” material on Wii is poses, but those alone are helping me reconnect to my body in a deeper and more spiritual way.
I know I am slowly coming to terms with myself and my narcolepsy when my immediate thought this year was, “hey, I can use the time at the MIA to unwind a bit.” Not only that, but also I felt no guilt in that thought. Thus, MITY is paying my to chill this afternoon. Even better, I definitely feel like I am earning that pay. My co-teacher and I spent time on campus and here framing the experience. We are getting the students into a different environment to provide new stimuli to inspire their work. And, quite honestly, whether I am sitting here, or if I were pacing the galleries, I would not be helping my students write. In fact, one could argue that my hover easily could do more harm than good.
Even as I typed that, I realized that one of my students just wandered past. The young women and men that I get to teach a MITY amaze me. Often, they have been treated with ridicule and disdain because their intellects frighten even their teachers. Thus, most of them have no idea how to feel supported, or welcomed, or appreciated. Also, because they tend to “get it,” at least intellectually, the wonderful young women and men do not know how to be kids. By letting them roam, we are giving them the gift of trust and respect. They certainly do not need me to watch their every move, nor do they need one more adult who makes them feel uncomfortable. I have no doubt that the approach which my co-teacher and I take in the classroom (by treating our students as brilliant and thoughtful young adults) is a huge piece of the success we have had over the years. I am grateful that I am beginning to find ways to bring that same attitude to our field trip.
It is just one more way that narcolepsy has proved to be a blessing, rather than a burden. The reality during the previous two trips to the MIA is that I HAD to rest for long periods. I felt guilty doing it – “I can't let MITY pay me to rest” – but it happened nonetheless. Bottom line, though, is that I will be far more effective tomorrow because I took this time to relax today. So much of managing my narcolepsy is letting go. I tire rapidly and stress increases the energy drain. By being hyperconscious at a museum, I exhaust myself and do a disservice to my students. Thus, I am allowing myself to appreciate the stillness today. Hopefully, I will continue to embrace the gifts and the frustrations that narcolepsy brings me on a daily basis.
On a tangential, but loosely related, note, my Wii experience continues to be productive. I have now found myself on at least two occasions dripping with sweat while grinning and laughing. I am clearly getting exercise (and finding genuine strength building in my legs), but I am also having fun. Both of those are vitally important to me living with my narcolepsy. My physical endurance has fallen precipitously over the past two years. It is the awful reality that time for exercise has remained a distant priority as I have been forced to choose where and when I exert myself. At the same time, I have pulled away from many of the things that do make me laugh. My ultimate team was a major highlight of my life, mostly for the joy and camaraderie that it brought me. Sadly, the declining nature of my physical condition stripped the fun out of ultimate. While part of the pleasure I take from using the Wii is laughing at how stupid my Mii looks at times, I am also spending far more time interacting with my daughter. I had dearly hoped that the Wii would be a bonding element for our little family. Things are definitely developing that way. Finally, even if the exercise and fun were not happening as well as they are, I am overjoyed that I am using the Wii to reconnect with yoga. Primarily the “yoga” material on Wii is poses, but those alone are helping me reconnect to my body in a deeper and more spiritual way.
Thursday, June 11, 2009
Summer Surviving and Blog Blessings
Somehow, my summer has managed to feel as frenetic as the school year did. I spent the first three days of my "vacation" meeting with the other folks who teach the same course that I do. While the work was exhausting, it was also extremely productive. We are making huge strides by mapping our joint curriculum. I thoroughly enjoyed the time that we all spent together, and I have high hopes for the coming year.
I have also been preparing for the creative writing course that I have taught for the past eight summers. As I was mapping my regular academic course, I was also puttering with the syllabus, web site, and lesson plans for this summer course. My co-teacher and I got to spend some time together today. I also got to spend time with one of our former students (and chatted with another) who is now interning with the aspect of the program that enrolls my daughter. I love that this young man is still a part of the Minnesota Institute for Talented Youth, but I also am overjoyed that I will get to see him more frequently over the next two weeks. This year will be the first time in five years when this fellow is NOT in our classroom.
While I thought that I would never experience anything in my "regular" teaching career like MITY, I realized over the past two weeks that my current situation at school IS like MITY. The rigor and creativity are present in both places, and I get to team with marvelous co-worker in both situations. Thus, my excitement for MITY feels different this year. I am still elated that it is here again, but it is not my "salvation" as it has been in the past. I think that is a good sign.
Finally, I need to give a shout out to a fabulous new blog that also discusses narcolepsy. It is actually called Narcolepsy and is written by a person with narcolepsy in Florida. He is close to my age and has a markedly similar approach. He too simply wants to process (for himself and others) what it is like to live with this unnerving, facinating, awkward, and bizarre disease. I do hope that others will check out what he has to say. Best of all, he posts on a fairly regular basis - something I am hoping starts to happen here again (soon).
I have also been preparing for the creative writing course that I have taught for the past eight summers. As I was mapping my regular academic course, I was also puttering with the syllabus, web site, and lesson plans for this summer course. My co-teacher and I got to spend some time together today. I also got to spend time with one of our former students (and chatted with another) who is now interning with the aspect of the program that enrolls my daughter. I love that this young man is still a part of the Minnesota Institute for Talented Youth, but I also am overjoyed that I will get to see him more frequently over the next two weeks. This year will be the first time in five years when this fellow is NOT in our classroom.
While I thought that I would never experience anything in my "regular" teaching career like MITY, I realized over the past two weeks that my current situation at school IS like MITY. The rigor and creativity are present in both places, and I get to team with marvelous co-worker in both situations. Thus, my excitement for MITY feels different this year. I am still elated that it is here again, but it is not my "salvation" as it has been in the past. I think that is a good sign.
Finally, I need to give a shout out to a fabulous new blog that also discusses narcolepsy. It is actually called Narcolepsy and is written by a person with narcolepsy in Florida. He is close to my age and has a markedly similar approach. He too simply wants to process (for himself and others) what it is like to live with this unnerving, facinating, awkward, and bizarre disease. I do hope that others will check out what he has to say. Best of all, he posts on a fairly regular basis - something I am hoping starts to happen here again (soon).
Tuesday, June 2, 2009
Jumping into June
Nothing captures the paradoxical nature of this entire school year better than this statement - Last week was the longest week of my teaching career, and I can't believe that it is already June. How last week's four days seemed to last a month is only made more confusing by the warp speed nature of this school year. I truly feel like my ninth graders just walked in the door. I know that the rapidity of time accelerates as I age, but this seems insane.
Of course, I have vivid memories of the richness of numerous days, so even the ridiculous pace of my life has gained more depth. It thrills me that I am learning to appreciate each moment rather than fretting about what I have left undone or anticipating the voluminous work loads that await me around every corner. Thus, this school year may have only last a split-second, yet I have found entire worlds within the fractional pieces of that split-second.
I am also taken aback by the ability I have found to push hard and to balance that exertion with quiet rest. I have never been this productive, while still respecting my narcolepsy. I definitely need to get better at finding the middle way, but I am neither living in denial about my condition, nor am I surrendering to it. In fact, while I am physically exhausted, I am also brimming with excitement because I will begin planning with colleagues next Monday. Rather than wanting to simply collapse for a week, I feel mentally and emotionally ready to begin processing and creating for the next batch of ninth graders.
Of course, I have vivid memories of the richness of numerous days, so even the ridiculous pace of my life has gained more depth. It thrills me that I am learning to appreciate each moment rather than fretting about what I have left undone or anticipating the voluminous work loads that await me around every corner. Thus, this school year may have only last a split-second, yet I have found entire worlds within the fractional pieces of that split-second.
I am also taken aback by the ability I have found to push hard and to balance that exertion with quiet rest. I have never been this productive, while still respecting my narcolepsy. I definitely need to get better at finding the middle way, but I am neither living in denial about my condition, nor am I surrendering to it. In fact, while I am physically exhausted, I am also brimming with excitement because I will begin planning with colleagues next Monday. Rather than wanting to simply collapse for a week, I feel mentally and emotionally ready to begin processing and creating for the next batch of ninth graders.
Saturday, May 30, 2009
Many MOONS Memories
Today was wonderful (and exhausting). Approximately one year after making it to my first MOONS-MN meeting, I presented my story. I also shared the many online resources that have been such a tremendous help in my journey. I honestly feel like the presentation went extremely well.
Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.
I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly "get it." The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.
I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.
Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.
I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly "get it." The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.
I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.
Thursday, May 28, 2009
Sad and Surreal
Somehow, it is still May. Although I have not written for weeks, it feels like it has been a year. While I know that I have managed life, work, home, and health reasonably well, I am frustrated that I have not found time for me. I need to blog. I need to exercise. I need to practice yoga. Thankfully, summer is literally around the corner. My primary personal goal is to set clear patterns for those three things for me.
Even though I have coped with my narcolepsy well, many moments overwhelm me. One happened yesterday. I left home at 7:20 AM, and other than a brief 45 minute stop for dinner, I did not return until 10 PM. In the midst of it, I honestly worried that I would have a sleep attack. Gratefully, everything went well, and I found a second wind.
Today was a radically different situation. Even though I had Monday off, I found myself stunned this morning when I remember that today was Thursday. I honestly felt like Tuesday and Wednesday last for weeks. Yet, today was the longest day yet. Much of the morning went well, but in my afternoon class, I led a discussion during which MANY of my boys attempted to fault a female character in a novel for a rape. I was and am aghast. Although the group has certainly had moments of sheer male stupidity, this horrific scene was completely off my radar.
We are reading Speak by Laurie Halse Anderson. The book is tremendous, and most students can't put it down. The discussion began with some wonderfully insightful comments, but a boy in the class who has often made short-sighted comments then offered that the protagonist was at fault for her rape. Assuming that his peers would immediately reject his comment, I called on two other boys. Both of them agreed with the first. The ensuing discussion entailed young women respectfully and intelligently refuting the lunacy that these boys were spewing, but the boys chose to ignore everything that the young women offered. I know that I handled the situation as well as I could, but I regret that I did not simply reject the initial comments. Unfortunately, I all too often try to be "fair." Since my own biases tend toward feminism, I refrained from shutting down this boy. Hoping that the boys would "learn" from the discussion, I proceeded to allow tremendous pain to be inflicted on the young women in the room.
When class ended the boys strolled out the door without a care in the world. Many of our young women were reeling from the boys' remarks. One broke down immediately. Two others spent 15 minutes in dialogue with my co-teachers and me. Three more wrote lengthy emails upon arriving at home. I highly doubt that the boys even pondered the class period for more than 10 seconds. Thus, in an attempt to "help" the boys, I subjected young women to tremendous pain. That is male privilege in its most sinister forms.
Thus, my co-teachers and I will adjust our schedule for tomorrow. Instead of playing our trivia and knowledge game, we will separate into gender specific groups. Hopefully, the young women can be reaffirmed by the testoterone-free period. The boys, on the other hand, should be interesting. I definitely think that those boys need to hear in no uncertain terms that rape is an evil crime and that a rape is NEVER the fault of the victim. It should be interesting.
Even though I have coped with my narcolepsy well, many moments overwhelm me. One happened yesterday. I left home at 7:20 AM, and other than a brief 45 minute stop for dinner, I did not return until 10 PM. In the midst of it, I honestly worried that I would have a sleep attack. Gratefully, everything went well, and I found a second wind.
Today was a radically different situation. Even though I had Monday off, I found myself stunned this morning when I remember that today was Thursday. I honestly felt like Tuesday and Wednesday last for weeks. Yet, today was the longest day yet. Much of the morning went well, but in my afternoon class, I led a discussion during which MANY of my boys attempted to fault a female character in a novel for a rape. I was and am aghast. Although the group has certainly had moments of sheer male stupidity, this horrific scene was completely off my radar.
We are reading Speak by Laurie Halse Anderson. The book is tremendous, and most students can't put it down. The discussion began with some wonderfully insightful comments, but a boy in the class who has often made short-sighted comments then offered that the protagonist was at fault for her rape. Assuming that his peers would immediately reject his comment, I called on two other boys. Both of them agreed with the first. The ensuing discussion entailed young women respectfully and intelligently refuting the lunacy that these boys were spewing, but the boys chose to ignore everything that the young women offered. I know that I handled the situation as well as I could, but I regret that I did not simply reject the initial comments. Unfortunately, I all too often try to be "fair." Since my own biases tend toward feminism, I refrained from shutting down this boy. Hoping that the boys would "learn" from the discussion, I proceeded to allow tremendous pain to be inflicted on the young women in the room.
When class ended the boys strolled out the door without a care in the world. Many of our young women were reeling from the boys' remarks. One broke down immediately. Two others spent 15 minutes in dialogue with my co-teachers and me. Three more wrote lengthy emails upon arriving at home. I highly doubt that the boys even pondered the class period for more than 10 seconds. Thus, in an attempt to "help" the boys, I subjected young women to tremendous pain. That is male privilege in its most sinister forms.
Thus, my co-teachers and I will adjust our schedule for tomorrow. Instead of playing our trivia and knowledge game, we will separate into gender specific groups. Hopefully, the young women can be reaffirmed by the testoterone-free period. The boys, on the other hand, should be interesting. I definitely think that those boys need to hear in no uncertain terms that rape is an evil crime and that a rape is NEVER the fault of the victim. It should be interesting.
Friday, May 1, 2009
May Magic
Yet again, time has had its way with me. My calendar seems to jump entire weeks at a time. Thus, May has arrived and my brain is still in the middle of April. The frenetic pace of school has not lessened, rather it has picked up. Today, I managed to finish putting comments on numerous papers, to copy our quiz, to help plan the day, to re-write the same quiz, and to connect with a number of students. The added "bonus" is that I did all of that during a day that was shortened for various reasons. We also had conferences yesterday, and my daughter had to go to the ER the night before. So, I slept little on Wednesday, talked to parents for hours on Thursday, and eked every ounce out of my body on Friday. While I am grateful that I can handle a day like that, I also know that I will be worthless for much of this weekend.
I also realize that I am getting more and more run down as the end of the school year approaches. I find it fascinating that I am beginning to know myself and my body well enough that I can recognize when I am pushing too hard. Unfortunately, I am still too stubborn to do much about that. I know that I will continue to push when I should stop - like I did today. I "survived," but that came at a price. The lingering congestion and illness that I seem to still have will worsen. There is no question in my mind about that. I also know that I will do my best to exploit the boost I get from the improving weather.
While temperatures did dip during the past week, the averages are now consistently in the 60+ range. That is glorious. I have come to abhor winter. The warmth coupled with the ever growing daylight definitely lift my spirits. Of course, that too has a down side. More light means that I am tempted to push myself even more. Even the idea of May gets me pumped. More daylight and milder days portend summer's arrival. Summer means a time to re-charge and MITY. Yet, my extroverted, crazy brain transforms those good vibes into an insane drive to complete everything before the school year ends. While the idea is lovely, the reality is that I should NEVER listen to grand ideas like that. My body can't handle them, but my stupid brain never seems to remember that. Hopefully, I am gaining enough wisdom that I will intervene on my own behalf. Nonetheless, I am thrilled that I am entering the final month of school, even if it means that I somehow lost the latter half of April.
I also realize that I am getting more and more run down as the end of the school year approaches. I find it fascinating that I am beginning to know myself and my body well enough that I can recognize when I am pushing too hard. Unfortunately, I am still too stubborn to do much about that. I know that I will continue to push when I should stop - like I did today. I "survived," but that came at a price. The lingering congestion and illness that I seem to still have will worsen. There is no question in my mind about that. I also know that I will do my best to exploit the boost I get from the improving weather.
While temperatures did dip during the past week, the averages are now consistently in the 60+ range. That is glorious. I have come to abhor winter. The warmth coupled with the ever growing daylight definitely lift my spirits. Of course, that too has a down side. More light means that I am tempted to push myself even more. Even the idea of May gets me pumped. More daylight and milder days portend summer's arrival. Summer means a time to re-charge and MITY. Yet, my extroverted, crazy brain transforms those good vibes into an insane drive to complete everything before the school year ends. While the idea is lovely, the reality is that I should NEVER listen to grand ideas like that. My body can't handle them, but my stupid brain never seems to remember that. Hopefully, I am gaining enough wisdom that I will intervene on my own behalf. Nonetheless, I am thrilled that I am entering the final month of school, even if it means that I somehow lost the latter half of April.
Thursday, April 23, 2009
Wrung out, but Writing
I don't have much energy because it is late, but I have felt the need to write for days. I am stunned how often life's whirlwind can suddenly shift, leaving me writhing in the dust. Even though last week was significantly more taxing, this week has seemed completely out of my control. A week ago, our teaching team was missing one member the entire week, while our students bombarded us with questions about their research papers. My household was also missing our superstar - my amazing wife. Yet, it is this week that feels more insurmountable. I doubt I will ever truly understand that aspect of myself or narcolepsy. This condition seems to have an unending supply of twists and turns.
Regardless, I have survived another week. I have a mountain of work this weekend - correcting and cleaning being the primary tasks at hand. Still, I am proud of myself for pushing through the challenges that continually crop up along the journey. I have had two intense department meetings this week. Two provided fantastic dialogue, but the underlying issues are enormous and get at the spiritual core of teaching. I also believe that another setback has been dealt in the realm of technology. After two years, numerous discussions, a day long listening session, and a full faculty and staff survey, our Technology Committee seemed ready to make a recommendation about modifying the usage rules for iPods/MP3 players and cell phones during the school day. But, during the chair's summary of the meeting (with only 10 minutes remaining) a slew of "issues" were raised - things we have discussed ad nauseum over the past two years - that delayed the process yet again. The ultimate irony is that our committee only makes a recommendation. The administrative team will give whatever we do final approval. Hearing about this situation today once again makes me questions whether this school is the right place for me or for my daughter. I hate that, but it also means that I am taking nothing for granted.
Regardless, I have survived another week. I have a mountain of work this weekend - correcting and cleaning being the primary tasks at hand. Still, I am proud of myself for pushing through the challenges that continually crop up along the journey. I have had two intense department meetings this week. Two provided fantastic dialogue, but the underlying issues are enormous and get at the spiritual core of teaching. I also believe that another setback has been dealt in the realm of technology. After two years, numerous discussions, a day long listening session, and a full faculty and staff survey, our Technology Committee seemed ready to make a recommendation about modifying the usage rules for iPods/MP3 players and cell phones during the school day. But, during the chair's summary of the meeting (with only 10 minutes remaining) a slew of "issues" were raised - things we have discussed ad nauseum over the past two years - that delayed the process yet again. The ultimate irony is that our committee only makes a recommendation. The administrative team will give whatever we do final approval. Hearing about this situation today once again makes me questions whether this school is the right place for me or for my daughter. I hate that, but it also means that I am taking nothing for granted.
Wednesday, April 15, 2009
Running Ragged
Driving my car today, I wondered how coherent I actually was. I did not doubt my ability to navigate effectively and accurately. My confidence was also high in my driving skills. At the same time, I am painfully aware that I am fuzzy on the exact details of the journey home. Plus, when I finally got here, my phone conversation with my wife is now the vague recollection of an echo. In that bizarre balance that seems to becoming my norm more and more frequently, I accomplished many things today, but I also used every ounce of energy that I could muster.
I am pressing myself to the limit. Some of the causes are unavoidable. One of my co-teachers is out on paternity level. Thus, only two of us are present this week to handle the onslaught of questions from our 40+ students in each section. Beyond that, we are working on research papers, which cause the number of student questions to escalate exponentially. I also have been logging long hours at my daughter's school. Frighteningly enough, I did not go to everything that I was supposed to attend (mostly because I did not trust myself behind the wheel of a car). Yesterday, I was at her school for three hours to help run a TechParent night. Today, my efforts aided in the second session of Poetry Club. Both things were cool, but they also drained me.
Beyond that, though, I have gotten much less sleep recently. I am forcing myself to milk my day for every spare moment. All of the priorities are "vital," both in reality and in my delusional mind, but they are taking their toll. As always, the thing that suffers most is my well-being. It also does not help that my wife is out of town. I always feel more desperate when that is the case.
I did have one moment today that was a "favor" for a friend, but was actually much more for me. A colleague teaches a class on loss. Most of their work centers on the loss of a close friend or family member, or a beloved pet. Still, the instructor has invited my in the past two years, because she understands that I too live with loss. When I spoke last year, I had just discovered Facebook and MySpace. I had also just start this blog. Thus, it was amazing to talk about my disease today. Even though I know the journey gets longer every day, I loved sharing my experiences because I do believe that narcolepsy (as much as I hate it) has saved my life. It has forced me to focus on myself and my true priorities.
I am handling my current exhaustion well. I am well-aware that I am functioning at half-speed at best, but I am more comfortable with that than ever. I know that many of my days are filled with mediocrity, yet that is far superior to one decent day followed by a month or two of misery. At least I can help students in limited ways, rather than being stuck at home. If that day does arrive, though, perhaps some of my friends at Narcolepsy Network will have worked out a cool way for me to still connect to other PWNs around the world. Okay, I must sleep before I fritter away another three hours.
I am pressing myself to the limit. Some of the causes are unavoidable. One of my co-teachers is out on paternity level. Thus, only two of us are present this week to handle the onslaught of questions from our 40+ students in each section. Beyond that, we are working on research papers, which cause the number of student questions to escalate exponentially. I also have been logging long hours at my daughter's school. Frighteningly enough, I did not go to everything that I was supposed to attend (mostly because I did not trust myself behind the wheel of a car). Yesterday, I was at her school for three hours to help run a TechParent night. Today, my efforts aided in the second session of Poetry Club. Both things were cool, but they also drained me.
Beyond that, though, I have gotten much less sleep recently. I am forcing myself to milk my day for every spare moment. All of the priorities are "vital," both in reality and in my delusional mind, but they are taking their toll. As always, the thing that suffers most is my well-being. It also does not help that my wife is out of town. I always feel more desperate when that is the case.
I did have one moment today that was a "favor" for a friend, but was actually much more for me. A colleague teaches a class on loss. Most of their work centers on the loss of a close friend or family member, or a beloved pet. Still, the instructor has invited my in the past two years, because she understands that I too live with loss. When I spoke last year, I had just discovered Facebook and MySpace. I had also just start this blog. Thus, it was amazing to talk about my disease today. Even though I know the journey gets longer every day, I loved sharing my experiences because I do believe that narcolepsy (as much as I hate it) has saved my life. It has forced me to focus on myself and my true priorities.
I am handling my current exhaustion well. I am well-aware that I am functioning at half-speed at best, but I am more comfortable with that than ever. I know that many of my days are filled with mediocrity, yet that is far superior to one decent day followed by a month or two of misery. At least I can help students in limited ways, rather than being stuck at home. If that day does arrive, though, perhaps some of my friends at Narcolepsy Network will have worked out a cool way for me to still connect to other PWNs around the world. Okay, I must sleep before I fritter away another three hours.
Sunday, April 12, 2009
Stunning Start
One year ago, I found myself struggling and lost in my handling of my narcolepsy. While I had clearly identified that I needed to make some changes at my job, I had yet to connect in a meaningful way with any other people with narcolepsy. I knew that living with this condition was difficult, but had no context for my situation. Was it normal to still feel this run down? How much did my doctor honestly know? Where any of my other "health problems" connected to my narcolepsy? The list of these questions was endless, but where could I even start to get answers. Worst of all, I knew I needed to process my own feelings and frustrations, but I felt like burdening my wife would be wholly unfair. She is my partner, lover, and best friend, but she could not be the sole repository of my stress and anxiety. I also had my Men's Group, but was finding it harder and harder to discuss my struggles, because narcolepsy sounds ridiculous when you explain it - I am tired during the day, and I don't sleep well at night. It invites the suggestions of getting more sleep, and the sympathetic replies of "I am tired too." Then, in a whirlwind week, everything changed.
First and foremost, I "discovered" Facebook and MySpace. It may sound insane for a forty-year-old to claim that social networking saved his life, but I am living proof. Since my daughter's school was moving to one-to-one computing in the middle school (each student has her or his own computer) and because of my own interest in using technology in the classroom, I thought I should start understanding what social networks truly were. I played with my profiles for a few days, but then I wondered if other PWNs could be found in either one. Turns out, I found support groups in both locations. The Facebook group Narcolepsy Support Group became my home away from home. I think there were around 400 members when I joined. As of today, the group is a single person away from 1000 members. Touching base with other PWNs had a huge impact.
In fact, the great irony is that the member who literally joined next on Facebook was a former student at my school. I could not believe it. I sent her a message on Facebook, feeling horribly awkward. But, within hours, we were trading emails since she too had narcolepsy, as did other family members. She has subsequently become a major factor in helping to lead the local MOONS-MN support group. So, Facebook not only put me in contact with other PWNs, but also provided me with my first face-to-face interaction with other PWNs.
The best was yet to come, though. The same motives that drew me to Facebook also had me curious about blogging. Since I was planning to use it in my classroom, I thought I might start a blog. After looking for other blogs about narcolepsy, I realized that only a handful of PWNs were sharing their stories. But, it was also clear that writing about it was helping the PWN authors and their readers. Thus, Narcoleptic Knights was born - one year ago today. I love that this one year anniversary has fallen during my break week at school. I have been privileged to blog every day over this hiatus. It has reminded me how important it is for me to write about my condition. Whether I am up or down, I need this release.
I know that some of my depression and stress over the last few months has been the limited blogging that I have done. Seeing that string of months with only two or three posts per months saddens me. I know that I was doing other things that needed to be done, but it reminds me of how far I must go to find more equilibrium in my life. It also blows my mind that I could go 3-4 months writing only a handful of posts and still average a post every three days for the year. I do remind my students regularly that I am overly verbose.
The final piece that makes this blog so important to me is that so many people have come here to read it. In one year, Narcoleptic Knights has had 891 unique visitors from 33 different countries and at least 47 regions/states within the U.S. There have been over 3300 total visits and still about a quarter of the visits come from new visitors. I am awed and honored that people from around the globe would spend even a few seconds looking at what I have said here. I do hope that I have helped some of them. At the same time, I want you all to know that you have helped me (and continue to help me). By visiting this site, you motivate me to continue writing. I have mentioned it here before, but I have never been good at keeping a journal. I always start strong, but rarely do I even make it a month when I try to regularly record my thoughts. But, because of the visitors to this blog, I have not only reached the one year mark, but also I am heading into the second year of Narcoleptic Knights with more fervor than ever. Whether you have left many comments, one comment, or simply read a portion of a post, please know that I am eternally grateful. I often avoid injecting my religious faith into this space, but it is not lost on me that today is Easter (at least it is for Roman Catholics and Protestants). The fact that we are honoring Christ re-born on the day that my blog reaches it one year mark (and it is a huge piece of my re-birth) is a gloriously wonderful thing. Thank you all for being a part of my life.
First and foremost, I "discovered" Facebook and MySpace. It may sound insane for a forty-year-old to claim that social networking saved his life, but I am living proof. Since my daughter's school was moving to one-to-one computing in the middle school (each student has her or his own computer) and because of my own interest in using technology in the classroom, I thought I should start understanding what social networks truly were. I played with my profiles for a few days, but then I wondered if other PWNs could be found in either one. Turns out, I found support groups in both locations. The Facebook group Narcolepsy Support Group became my home away from home. I think there were around 400 members when I joined. As of today, the group is a single person away from 1000 members. Touching base with other PWNs had a huge impact.
In fact, the great irony is that the member who literally joined next on Facebook was a former student at my school. I could not believe it. I sent her a message on Facebook, feeling horribly awkward. But, within hours, we were trading emails since she too had narcolepsy, as did other family members. She has subsequently become a major factor in helping to lead the local MOONS-MN support group. So, Facebook not only put me in contact with other PWNs, but also provided me with my first face-to-face interaction with other PWNs.
The best was yet to come, though. The same motives that drew me to Facebook also had me curious about blogging. Since I was planning to use it in my classroom, I thought I might start a blog. After looking for other blogs about narcolepsy, I realized that only a handful of PWNs were sharing their stories. But, it was also clear that writing about it was helping the PWN authors and their readers. Thus, Narcoleptic Knights was born - one year ago today. I love that this one year anniversary has fallen during my break week at school. I have been privileged to blog every day over this hiatus. It has reminded me how important it is for me to write about my condition. Whether I am up or down, I need this release.
I know that some of my depression and stress over the last few months has been the limited blogging that I have done. Seeing that string of months with only two or three posts per months saddens me. I know that I was doing other things that needed to be done, but it reminds me of how far I must go to find more equilibrium in my life. It also blows my mind that I could go 3-4 months writing only a handful of posts and still average a post every three days for the year. I do remind my students regularly that I am overly verbose.
The final piece that makes this blog so important to me is that so many people have come here to read it. In one year, Narcoleptic Knights has had 891 unique visitors from 33 different countries and at least 47 regions/states within the U.S. There have been over 3300 total visits and still about a quarter of the visits come from new visitors. I am awed and honored that people from around the globe would spend even a few seconds looking at what I have said here. I do hope that I have helped some of them. At the same time, I want you all to know that you have helped me (and continue to help me). By visiting this site, you motivate me to continue writing. I have mentioned it here before, but I have never been good at keeping a journal. I always start strong, but rarely do I even make it a month when I try to regularly record my thoughts. But, because of the visitors to this blog, I have not only reached the one year mark, but also I am heading into the second year of Narcoleptic Knights with more fervor than ever. Whether you have left many comments, one comment, or simply read a portion of a post, please know that I am eternally grateful. I often avoid injecting my religious faith into this space, but it is not lost on me that today is Easter (at least it is for Roman Catholics and Protestants). The fact that we are honoring Christ re-born on the day that my blog reaches it one year mark (and it is a huge piece of my re-birth) is a gloriously wonderful thing. Thank you all for being a part of my life.
Saturday, April 11, 2009
Suddenly Sunny
I awoke this morning with a bit more spring in my step. I am still exhausted, and I need to work on balance, but the world seems brighter today. It doesn't hurt that the sun is out in Duluth today, but the bigger reason is that once again fellow people with narcolepsy have lifted my spirits. Last night, we went to see my mother and my grandmother. It was good to spend time with them, but everyone is also struggling. My grandmother's health has both of them concerned and on edge. Thus, my stress level was higher when we returned to the hotel around 9 PM. Fortunately, I remember that a friend of mine that I met through the Narcolepsy Network had planned to chat with me on Yahoo Messenger. Sure enough, she was there, but soon others joined us.
The webmaster for the Narcolepsy Network is fantastic, as a person and as a web guru. As a result, he has been able to garner the assistance of a number of quality individuals around the country to help moderate the forums and to improve the site. I feel lucky to have been included. Thus, my "brief" chat with a friend transformed into a full-fledged planning session involving people in Minnesota, Michigan, Washington (state), and Ohio. We were discussing ways to promote and aid local/regional narcolepsy support groups by providing them space on the overall Narcolepsy Network site. The group out in Portland, Oregon (and Vancouver, Washington) already has material up in this fashion for their P.A.N.E.S. & V.A.N.E.S. group. The idea is absolutely thrilling because it will raise the profile of these groups (including the MOONS group I help organize), and those groups will also be more prone to connecting with each other.
Beyond the support group planning, we also discussed ways to make the overall site and forums better. While it is a team effort, the driving force IS our webmaster. Seriously, the guy is a saint (and a rocking musician). One element that he raised last night is trying to get the doctor who runs our Minnesota group onto the forums on a regular basis. I think it is brilliant. She is likely one of the best neurologists in the country, particularly for sleep medicine. But, more impressively, she genuinely cares for PWNs and wants to do everything she can to help them, even when they are not her patients. Hopefully, she will be open to establishing a presence on the Narcolepsy Network Online Forums. We shall see.
Even these stunning ideas did not raise my spirits the most. The best thing about this impromptu meeting was the love and respect that my friends sent my way. They have all been working like mad to improve elements of the Narcolepsy Network sites, while I have done a few things here and there. Rather than be frustrated that I am not doing more, all of them were overwhelming grateful for what I have done. They all get that I am doing the best I can while balancing family, work, volunteering, and my own health. Since all of them are also PWNs, they also know that the condition ebbs and flows. Each person was overjoyed that I was "back" in more of a groove, rather than chastising me for what had not been accomplished. I am certainly blessed to have both the Narcolepsy Network and these quality people in my life.
The webmaster for the Narcolepsy Network is fantastic, as a person and as a web guru. As a result, he has been able to garner the assistance of a number of quality individuals around the country to help moderate the forums and to improve the site. I feel lucky to have been included. Thus, my "brief" chat with a friend transformed into a full-fledged planning session involving people in Minnesota, Michigan, Washington (state), and Ohio. We were discussing ways to promote and aid local/regional narcolepsy support groups by providing them space on the overall Narcolepsy Network site. The group out in Portland, Oregon (and Vancouver, Washington) already has material up in this fashion for their P.A.N.E.S. & V.A.N.E.S. group. The idea is absolutely thrilling because it will raise the profile of these groups (including the MOONS group I help organize), and those groups will also be more prone to connecting with each other.
Beyond the support group planning, we also discussed ways to make the overall site and forums better. While it is a team effort, the driving force IS our webmaster. Seriously, the guy is a saint (and a rocking musician). One element that he raised last night is trying to get the doctor who runs our Minnesota group onto the forums on a regular basis. I think it is brilliant. She is likely one of the best neurologists in the country, particularly for sleep medicine. But, more impressively, she genuinely cares for PWNs and wants to do everything she can to help them, even when they are not her patients. Hopefully, she will be open to establishing a presence on the Narcolepsy Network Online Forums. We shall see.
Even these stunning ideas did not raise my spirits the most. The best thing about this impromptu meeting was the love and respect that my friends sent my way. They have all been working like mad to improve elements of the Narcolepsy Network sites, while I have done a few things here and there. Rather than be frustrated that I am not doing more, all of them were overwhelming grateful for what I have done. They all get that I am doing the best I can while balancing family, work, volunteering, and my own health. Since all of them are also PWNs, they also know that the condition ebbs and flows. Each person was overjoyed that I was "back" in more of a groove, rather than chastising me for what had not been accomplished. I am certainly blessed to have both the Narcolepsy Network and these quality people in my life.
Wednesday, March 25, 2009
Midnight Madness
Once again, I am up far later than a PWN should be. Oops! Life continues to surge at a break neck pace, yet I am surviving. My daughter had a horrid cold at the beginning of last week, and I promptly caught it. I came home early from school last Wednesday and immediately got worse. Somehow, I managed to limp through Thursday and Friday, not only getting to school, but also teaching decently. It was stunning to realize that I could feel as bad as I did, but still get to work and perform adequately. I must admit that I felt a bit of pride in being able to do that. Of course, I also questioned my sanity, particularly on Friday when my morning dose of cold medication did not play nicely with my stimulant. The chest pains and racing heart had me a little worried, but I got through it.
This week has been better from a health perspective, but today was difficult personally and professionally. We have been discussing a change to our cell phone policy and our iPod/mp3 player policy for the past two years. March 24 was finally the day of our "listening session" to hear faculty feedback. Needless to say, no one tends to be more biting in their criticism than disgruntled teachers. I facilitated two sessions and felt pummled by the negative feelings of many of my colleagues. I can understand resistence to the ideas proposed, but many people went well beyond that and vented about "technology" in general. It hurt because our committee has put so much time and energy into our work, but also because I personally believe that integrating more technology into the schoolwide curriculum is vital to helping our students prepare for the future that awaits them. To have a number of colleagues disparage that idea saddened me. It also made me question whether my school is the right place for my daughter, or for me.
This week has been better from a health perspective, but today was difficult personally and professionally. We have been discussing a change to our cell phone policy and our iPod/mp3 player policy for the past two years. March 24 was finally the day of our "listening session" to hear faculty feedback. Needless to say, no one tends to be more biting in their criticism than disgruntled teachers. I facilitated two sessions and felt pummled by the negative feelings of many of my colleagues. I can understand resistence to the ideas proposed, but many people went well beyond that and vented about "technology" in general. It hurt because our committee has put so much time and energy into our work, but also because I personally believe that integrating more technology into the schoolwide curriculum is vital to helping our students prepare for the future that awaits them. To have a number of colleagues disparage that idea saddened me. It also made me question whether my school is the right place for my daughter, or for me.
Tuesday, March 10, 2009
Sleepy Savings
Somehow it is already March 10th. Time seems to spin wildly out of control, particularly when my life gets stressful. Fortunately, I survived the end of yet another trimester. I also thoroughly enjoyed Suddenly Sleepy Saturday. The movie Wide Awake was decent, particularly when one remembers that it was made for Lifetime Network. The main character is a PWN and a narcolepsy researcher. She is swept up in a thriller when someone sabotages the labs research. Much better than the film was spending time socially with other PWNs.
Interestingly enough, though, I feel like I am the one who needed a stronger reminder about the impending time shirt with the arrival of Daylight Savings Time. I had a tough time going to sleep on Saturday night. Sunday morning and evening were even worse. As a person with narcolepsy, I try to have a firmly established sleep routine. The shift of even an hour can radically alter that process. I still did not feel right today. I honestly think that I should start with my new sleep pattern the week before Daylight Savings Time. In fact I am likely going to do that for both the end of Daylight Savings Time and for next year's Sleep Awareness Week.
What shocks me in this realization is how dependent my schedule, and my life, is on routine. I have always known that I function better with structure, at least until my obsessive tendencies cause me to implode. But, the bottom line is that a set routine and pattern IS the best way to cope with my narcolepsy. I still need to be flexible enough to accept the waxing and waning of energy, but I know I need to find some semblance of structure in my standard day. That seems far-fetched given the chaotic nature of our household, but it is definitely an important goal that I must pursue.
Interestingly enough, though, I feel like I am the one who needed a stronger reminder about the impending time shirt with the arrival of Daylight Savings Time. I had a tough time going to sleep on Saturday night. Sunday morning and evening were even worse. As a person with narcolepsy, I try to have a firmly established sleep routine. The shift of even an hour can radically alter that process. I still did not feel right today. I honestly think that I should start with my new sleep pattern the week before Daylight Savings Time. In fact I am likely going to do that for both the end of Daylight Savings Time and for next year's Sleep Awareness Week.
What shocks me in this realization is how dependent my schedule, and my life, is on routine. I have always known that I function better with structure, at least until my obsessive tendencies cause me to implode. But, the bottom line is that a set routine and pattern IS the best way to cope with my narcolepsy. I still need to be flexible enough to accept the waxing and waning of energy, but I know I need to find some semblance of structure in my standard day. That seems far-fetched given the chaotic nature of our household, but it is definitely an important goal that I must pursue.
Saturday, February 28, 2009
Many MOONS Moods
Today was wonderful. We had a fantastic MOONS meeting. I find it incredible that gathering with other PWNs can provide me such joy. Some of them I know, but many are still strangers to me. Yet, simply being a room and knowing that a majority of the people there experience some of the same ridiculous struggles that I endure makes me smile.
I also find it fantastic that I learn something new every time we gather. Today, Dr. Eve Rogers shared her Narcolepsy Basics talk. Invariably, she need to cut some sections of it, but everything that she was able to present was riveting. One of the most stunning pieces of information for me was the connection between hypocretin/orexin (the protein missing in PWNs' CSF) and temperature regulation. My night sweats can be unreal, and I also have periods of time that I feel feverish or chilled. Suddenly, it seems that I might have yet another aspect of my health that is connected to and undermined by my narcolepsy.
The other super cool thing is that I get to see some of these folks again next week. Tomorrow is the start of Sleep Awareness Week. It culminates with Suddenly Sleepy Saturday. The National Sleep Foundation decided to connect sleep awareness with the beginning of daylight savings time. Thus, when we "spring ahead" on Saturday night, March 7, everyone has a chance to glimpse briefly some of the fatigue and sleepiness of narcolepsy. To celebrate the day, our MOONS groups has decide to hold the first (annual) Suddenly Sleepy Saturday. We are going to bring blankets and watch a movie. We will also have some pizza and a cake (Dr. Rogers' birthday is the day before our event). While I am thrilled that we are having an "event." Much more importantly, this gathering will be the first purely social MOONS activity. I am definitely hopeful that we will continue to provide both educational and social events.
I also find it fantastic that I learn something new every time we gather. Today, Dr. Eve Rogers shared her Narcolepsy Basics talk. Invariably, she need to cut some sections of it, but everything that she was able to present was riveting. One of the most stunning pieces of information for me was the connection between hypocretin/orexin (the protein missing in PWNs' CSF) and temperature regulation. My night sweats can be unreal, and I also have periods of time that I feel feverish or chilled. Suddenly, it seems that I might have yet another aspect of my health that is connected to and undermined by my narcolepsy.
The other super cool thing is that I get to see some of these folks again next week. Tomorrow is the start of Sleep Awareness Week. It culminates with Suddenly Sleepy Saturday. The National Sleep Foundation decided to connect sleep awareness with the beginning of daylight savings time. Thus, when we "spring ahead" on Saturday night, March 7, everyone has a chance to glimpse briefly some of the fatigue and sleepiness of narcolepsy. To celebrate the day, our MOONS groups has decide to hold the first (annual) Suddenly Sleepy Saturday. We are going to bring blankets and watch a movie. We will also have some pizza and a cake (Dr. Rogers' birthday is the day before our event). While I am thrilled that we are having an "event." Much more importantly, this gathering will be the first purely social MOONS activity. I am definitely hopeful that we will continue to provide both educational and social events.
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