Happy Homecoming

We had a fantastic day on the road today. We experienced little heavy traffic, avoided any and all foul weather, and got from Hammond, IN to Saint Paul in LESS than eight hours. That includes two pit stops (one of which was also a re-fueling stop) and an hour long lunch at the Norske Nook in Osseo, WI. My wife did a bulk of the driving, but I also took a shift. While it taxed me, I handled the situations and my mood better than I did yesterday.

I drove from just across the Wisconsin and Illinois border until the first Dells exit. It turned out to be more than we had planned on me driving, but part of that was how frazzled I was at the end. Most of the stretch was good, but traffic got boggy around Madison (which frustrated me again). I also struggled with the argument that my wife and daughter had around the same time. My daughter is amazing, but she is also twelve (soon to be thirteen). She has a HUGE heart, but is prone to defensiveness whenever she is forced to confront uncomfortable issues. My wife was suggesting that our daughter start practicing her trombone soon. That did not go over well, and the ensuing conflict resulted in our daughter (once again) being disrespectful to my wife. I did not explode, but I wanted to do so. I fumed about it, though, which made my wife nervous. To her credit, she gave me space (and encouraged our daughter to do the same). My wife also confronted our daughter about the disrespectful language - in a calm and appropriate way. While I did wind up pushing 20 miles farther than I had initially planned (due to a cruddy set of circumstances - poor lane changing and an unhelpful exit configuration), we all stayed grounded.

Other than that one moment, the rest of the trip was fairly low key. All three of us were thrilled to get home, but also had a blast on vacation. I truly can't remember another trip that ended this well. My wife and I both got some work done tonight, and we created a rough plan for the week. She needs to get a presentation planned, so she is likely going into her office tomorrow even though she took the day "off." I am hoping to get one or two small things done around the house, but I am making a conscious effort to keep Monday and Tuesday light because I know I need to recover from the trip, particularly the realities of spending two long days in the car. Our daughter was scheming plans for herself three days ago. She even went to a friend's house tonight. I am looking forward to spend a least two or three days with her during the next two weeks. It should be fun to "goof off" with her even as I get myself into school mode.

Magical Madness

The hour is late. We just got home from the set strike from my daughter's play. Technically, my wife and I got home just now from set strike; my daughter just got home from the cast party. Today was an insane whirlwind of activity. After having the first full night of Xyrem after three days of half doses, I was slow to rise this morning. I eventually got up and let my wife and daughter sleep. They were both wiped out after the stress and the exultation of yesterday's performance. I played a little on the Wii, did the crossword, and got a couple of things together for my MOONS-MN gathering. Then, when my wife did wake up, we had our weekly "talk time."

I truly enjoy our weekly ritual, but today was extra special because we basically talk about how much we both enjoyed seeing our daughter perform. Soon, though, I needed to get ready for MOONS. I got to the MOONS meeting early because we had to use a different room this time. Park Nicollet Methodist Hospital was doing maintenance work in our usual room. The new spot was tough to find. I did try to put up some signs, but then stood near the entrance to the hospital to make sure people knew where to go. I also wound up going up and down the stairs repeatedly because our usual meeting room is down one floor. Thankfully, I spotted most folks and got them to the room. The afternoon was a blast because we had 11 people there simply sharing their stories and chatting about life with narcolepsy. One of the best things was the age range. We spanned from 21 up to 80. I have high hopes for the direction that MOONS continues to take.

After the meeting broke up, I had to hop back in my car to get home. Traffic was rotten, so I got home at 5:05. Fifteen minutes later we were in the car heading for my daughter's show. My wife and I helped clean the floor before the performance because there was still popcorn crumbs in many spots. Then we did other odd jobs. The performance was even better tonight, and our daughter was radiant yet again. I am thrilled that this was such a good experience for her. Finally, our daughter got to hang out with her friends on the cast, while my wife and I helped get everything in order.

Although it is late, and I will definitely pay for the energy I exerted today, everything was worth it. The time with my wife and the MOONS meeting would have made for an awesome day if only one had happened. But the fact that both took place today, AND I got to see my daughter light up the stage yet again, makes this a day to remember. Crazy and chaotic though it was, the day was glorious.

Properly Proud Papa

I rarely post twice in the same day, but I needed to write this immediately upon returning home. My daughter was amazing. The entire show came together phenomenally well, but my daughter's performance took my breath away. Her acting already has impressed me in the past, but what she did on stage tonight blew my mind. She stayed in character the entire time, even though she is on the stage the entire time. She even created some ad lib when one of the performers was late to the stage. If I had only seen her act tonight, I would be walking on a cloud for weeks. She was that good! And, the fact that the entire cast pulled together as they did tonight is a true testament to the hard work these kids have all put into the show.

What I was completely unprepared for, though, was the stunning beauty of my daughter's voice. I have heard my daughter sing before. I have even heard her sing the songs to this show. But, my daughter apparently has a WHOLE different gear for "performing." She sang with power, grace, style, and energy tonight. Her range is impressive, particularly considering her lack of any formal voice training. Even more impressive, though, was the richness and strength in her tone. She injected tremendous emotion into her words. Her big solos are in the second half of the show, after spending a full hour under the lights speaking and performing non-stop during Act I. The fact that she could still speak is incredible, but her first song in particular literally made people cry it was so touching. And while the lyrics are a small piece of that, far more of the tenderness was due to the way my daughter sang it. I am awed by her.

Relaxed Reminiscing

I had an excellent day today. I wish I could say that I got done numerous tasks, or that I felt wide awake for the first time in years, but my definition of "excellent" is far more mundane these days. I did make progress on a few of the things weighing me down before my Friday ended, but that kept me up until nearly midnight. While that might have made for a rotten Saturday, the opposite happened.

I slept late (for me) and got up at 7:30 am. My wife and I had our weekly "talk time." It is always wonderful, but today was even better because we simply let ourselves enjoy the time together. We both got a chance to share some recent insights and passions. It was sweet, quiet, and fun, even watching the health care PR insider who was on Bill Moyers' Journal last night. After the time with her, I had a fun and exciting meeting with some folks from Narcolepsy Network. These folks are fantastic because they make the forums (and website) happen. Although I get support in many places, the people who I work with to moderate the Narcolepsy Network forums are some of the best people that I know - and they all have narcolepsy too. It is astounding to see the incredible work that they do. In fact, the new look of the forums (literally updated within the last two weeks) has brought in a decent number of new folks. Certainly, the Narcolepsy Network is far more than the forums (particularly if you become a member), but having a diverse way to connect to other PWNs is massively important. Our online meeting took two hours because we have such a good time interacting - even in a "chat."

The best part of my day was yet to come, though. My wife and I headed out to get our daughter. She was at an overnight birthday party on a lake. They even slept out in tents. Even the car ride was a hoot. My wife and I travel extremely well with each other. Once we added our daughter to the mix we headed from a spot north of the Twin Cities metro area to a suburb southwest of it. While that might seem awful, the traffic was relatively light - a huge plus. We were on our way to see some of my high school friends, particularly a friend who has been living in Great Britian for the past 12+ years.

The party was at his dad's house. The home and neighborhood are gorgeous, and the numerous children loved the pool in the backyard and the large game room in the finished basement. While ages ranged from 5 to 12, there were enough boys and girls at each range that everyone felt connected. The kids managed to keep themselves entertained, allowing the adults to interact as well. Even though it has been 23 years since we graduated from high school, these three friends of mine remain dear to me (and to my wife). While I do not see any of them as frequently as I would like, we always manage to pick up where we left off. It is also fun to reflect on the past and to learn about new adventures and activities.

Enhancing the entire afternoon, the weather was literally perfect. I often joke that many Minnesotans live in this state because we get three or four perfect days every summer. The sun shine was glorious, and a light breeze made the temperature, which hovered right at 80 degrees Fahrenheit, exquisite. Plus, we had fantastic food! My friend's dad made pulled pork for us, and my wife had homemade bruschetta and an amazing black raspberry cobbler. Both were a huge hit. Perhaps the best thing, though, was the chance to be present on this incredible day with a multitude of people who are good and decent. I simply sat around and chatted with a group of people who mean the world to me. The whole day reminded me that I am truly blessed. Narcolepsy drives me crazy, but it can't take a day like this from me. It thrilled me that I was not fretting about my "undone" tasks. Rather, I placed myself firmly in each and every moment of the day.

Delightful Date

Occasionally, my wife and I find time to go on a date. Sadly, such an event is frighteningly rare. We did manage to go on a date today, though. It was wonderful! My only frustration is that going out to lunch and seeing a movie wiped me out. Hopefully, we can still have some snuggling and romance tonight. Nonetheless, the chance to let everything else go and to get away with each other was glorious.

Our daughter headed off to a friend's lake cabin today. Thus, we have the house to ourselves. I made the date suggestion last night when we knew that we would be childless for most of today. My wife jumped at the idea immediately. We even handled the dining choice well. Initially, I tried to wrack my brain for some place fun to eat near the theater, but narcolepsy does quite a number on memory and decision-making. As a result, we decided to drive toward the theater and then explore for a place to eat. The town preceding the movie theater is North Saint Paul. We eventually discovered downtown in North Saint Paul. That alone might have been worth the trip. Even though the city is technically an "inner ring suburb," the place felt like the main drag of any out state town in Minnesota. It was wonderful!

We decided to eat at Cindy Jean's. There were a few other choices, but the Legion Hall looked iffy and the bars were not the scene we wanted today. Cindy Jean's was a riot. It has three tables and funky decor. There is a huge flat screen TV and a Wii. In fact, Cindy Jean's apparently hosts regular Wii tournaments. The sandwiches were fantastic, and we thoroughly enjoyed the fun meal that we had there. We did feel bad for the other couple eating there. They had no cash, and Cindy Jean's does not take plastic. Thus, the poor guy went looking for a cash machine. It sounded like he had to pay a bank to cash his check. And, he was gone for 20 minutes.

We then headed for the theater. We saw Sam Mendes' new film Away We Go. It stars Maya Rudolph and John Krasinski, and it is fantastic. My wife had seen some reviews that had raved about the film. It is beautifully shot, and the main characters definitely reminded us of each other. Krasinski and Rudolph work well together, and their characters make an odd, but well-matched couple (which is part of the reason we both identified with them - my wife is definitely the yin to my yang). As much as I enjoyed the film, I think the best part might have been reflecting on the film with my wife as we drove home. Nothing is more thrilling to me than getting a chance to be with my amazing wife.

Perhaps what made this day most special is that Monday (June 29) was our 18th anniversary. We did not have time to celebrate in any meaningful way. We definitely acknowledged the event, but having this sweet and simple date today was a perfect celebration for us (and of us). I adore my wife. She is the rock of our family. She is also the most wonderful, intelligent, gorgeous, exciting, sexy, sweet, gentle, driven, and gifted woman that I have ever met. I am blessed to be her husband. I know that I would not be handling my narcolepsy nearly as well without her constant love and support. Thankfully, our relationship goes stronger and deeper with each passing moment and every passing day.

Yin Yang Year

Happy New Year! It occurred to me today, as I drove around Saint Paul (and the Twin Cities) like a mad man, that I should spend some time reflecting on this past year. It is breathtaking to realize that one year ago I could feel hope slipping away yet again. In fact, as I entered January of 2008, I was sure that the stimulant I was on was not strong enough. Then, when I tried amphetamine for the first time, I was convinced the wheels had completely come off of the wagon. My hands began "sweating," and I found myself in a complete spiral. Somehow, I held things together, but I also missed my most school in January and February. The dyshidrotic eczema was driving me nuts, and I seriously thought that I might need to quit teaching. I also remained completely exhausted.

Even when I got my hands under control, I had a swollen testicle again and felt horribly run down. Still, the worst was yet to come. As February ended and March began, I found myself at a low water mark. I hated going to work and knew that my classes were toxic to me. I had started on my amphetamine, but my knees were in extreme pain. My weight was barely hovering at 150 pounds. And, with the start of the third trimester, I found myself completely lost. My schedule and pattern at school had changed and it took me three weeks to get my bearings. All of it had me beside myself. Then, we went to D.C. for the Fools Fest, and the worm turned.

Initially, I was convinced it was the end of the world. I could barely walk up the hill to the fields. I didn't even go to the fields on the second day. It was wonderful to see my friends from college, but I was depressed beyond belief. It looked like narcolepsy, or my body, or something was going to take ultimate from me too. Yet, as I returned from D.C., I seemed to have a little more hope. Perhaps it was seeing our friends, or maybe it was my deepest self getting fed up, or perhaps it was the arrival of spring, but I came home with a small fire in my belly.

The first piece of good news was that my knees were okay. I needed physical therapy, but I had been convinced something was torn. Then, I found Facebook and started this blog. Suddenly, I was discussing my narcolepsy and connecting with others. At school, I finally recognized how toxic my course load was and owned it. I came to terms that I would be unhappy for the rest of the year, and that made things lighter. I also turned my focus to the new course that promised to be much better for the 2008-2009 school year (and it has been). Finally, I began, for the first time in my life, to accept that I am a finite person. I can't be all things to all people. I must be content to do what my body allows.

As the school year ended, I finally got to a MOONS meeting. I signed up for the Narcolepsy Network. I got excited that MITY was approaching. At the same time, I had to confront again and again my tendency to overestimate how much strength I had. Ultimate remained frustrating, and I never did find a way to get back in shape. Eventually, I had to step away from ultimate. I still don't know if I will be able to play competitively again, but am much more at peace with that. I also had many dark days when I turned all of my ire inward. But in processing those moments, I found more and more ways to forgive myself.

These last few months have been incredible. While there is still so much that I must learn about myself, about narcolepsy, about how to find peace, I know that I am on the right path. The most important lesson I have learned in the past year is that I can't control a vast majority of my world, but I can control my reaction to the world around me. I need to roll with the realities of my life. I need to breathe. I need to take each day, one moment at a time. Hopefully, as good as the end of 2008 has been, it is only the beginning. The more content I am, the more I am able to embrace the world.

Tremendous Teammates

I thoroughly enjoyed my four days in Duluth, although the drive home was a tad taxing. We were in snow and on snow covered roads for most of the trip. Fortunately, we got home safely. One element of the entire Duluth trip (that surprised me) was how often I invoked the name of my two teaching colleagues. I know that my attitude and approach to life is significantly better. Simply put, I am coming to terms with what it means to have narcolepsy. That said, though, I know that this year has been one of my best teaching experiences because I work with two amazing individuals.

Both of my co-teachers place their students ahead of everything else. They are full of compassion and truly listen to what students have to say. At the same time, they demand excellence from every students. Both know that students have a wide range of abilities, and they lavish praise upon each one, but want to push each student to her or his best. That means even more work for the teacher, but my teammates know those efforts will make a massive difference in helping these young women and men maximize potential. Beyond all of this, they love to have fun. Our classroom constantly resonates with laughter and joy.

The gentleman who handles social studies recently became a father. I know that he will be amazing as a parent. He has lived a tough life, but constantly looks for ways to learn from his experiences. He is also a tremendous practitioner of sound educational theory. He scientifically approaches every lesson and works to match his material to his students' developmental levels. Best of all, he holds himself to the high standards that he asks of his students. Justice permeates everything that he does. He even puts his own money on the line to help his students understand the importance of justice.

Our religion teacher is perhaps even more remarkable. She is still in her 20s, but has the wisdom of a 50 or 60 year old. Her calm, sage presence draws students to her. And, she holds each student in her heart and in her prayers. Her warmth and friendliness work in stunning unison with the rigorous demands that she also puts on the students. She pushes them, but also feeds their souls. I know that these young women and men will live significantly richer lives because they had her as their teacher. Best of all, she provides our ninth graders collegiate content in a form they can grasp.

I also adore that both of my colleagues see writing as the most important thing that any of can do in our classroom. In fact I would be hard pressed to say which of us is the most demanding within our grading of the writing. Regardless, our students are getting a great education because we do work together. I feel incredibly blessed to work with these two teachers. It remains a struggle to do even this course with my narcolepsy, but the knowledge that I have these two standing with me gives me strength.

Mindful of Mystery

My goal daily is to live my life in a state of mindfulness. Given the nature of narcolepsy, I work to accept the world as it comes to me, rather than dwelling on missed opportunities or obsessing about impending events. Since I am naturally a worrier and second guesser, the goal is definitely a stretch goal for me. Even so, I am thrilled to report that I have been far more successful, thus far, at living in the moment than I ever believed that I could be. Many moments still fall into my old patterns, but far more do not. I get chills every time I recognize that grounded in the present. The current week has been a perfect example.

I know that I am "off" this week. That said, though, I have made it to work each day and been able to dialogue honestly with my peers and my students. Even cooler is that I have been attentive to my daughter even with a mountain of correcting looming over my head. On Monday I took her to her volleyball game. Our directions were wrong, but we still managed to be the first to arrive. Eventually, the entire team made it. The girls beat the other team soundly, but more importantly, I had a glorious night with my daughter. Last night, we were off to volleyball practice. Some girls missed practice so the coaches and I played against the girls. It totally wiped me out (and I am still feeling the effects today), but during the scrimmage and on the way home, my daughter and I simply chatted. My work load had increased that day, but I didn't care. My daughter was at the center of my world. Finally, we had our last volleyball game (until next week) today. As had been the case all week, my correcting pile grew, but I was far more interested in watching my daughter's game. They did drop the first game, but came back to win the second 27-25. The intensity was phenomenal, and the lead changed at least 14 times during the game. Finally, the girls overwhelmed the other team in the third match. My favorite highlight came on the last point of the game. My daughter's team actually passed the ball so three people touched it. Cooler still was the head's up move by one of my daughter's teammates. This young woman played the ball off of the net and got it over. As the ball dropped to win the match, all of us (kids and parents) clapped and cheered. The best part remained that I focused my energy on my daughter instead of the multitude of unfinished assignments in my school bag.

I have no delusions that every week will go this well. I also know that my daughter might say something else about the last three days. But, as far as I can tell, I have had one of my best string of days, in terms of my ability to remain mindful. The reality is that I can't control the past or the future, but I can learn to appreciate, enjoy and respect the joy and wonder happening in each second throughout the world around me. Doing that can only strengthen my relationship with my daughter and my wife. In fact the person who gets the most out of doing this is I.

Mighty MOONS

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

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

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

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

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

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

Fast Fun

I can't believe it is Thursday! My week has flown. In large part it is due to the crazy pace of my school day. While that has been a bad thing at time, it is wonderful this year. I am enjoying my new teaching assignment more and more every day. Our students are wonderful, and I have never felt better about the way our team is functioning. We truly complement each other and support one another. I also love that we are modeling good behavior and attitudes for our students.

Another stunning aspect of the year, thus far, is the enthusiasm that I have had upon arriving home. I am not only enjoying my time in school, but also I am enjoying the work that I am doing at home, even the correcting. It is still a pain, but I feel like I am providing good (and timely) feedback for the first time in years. Just today, I connect with a student and believe that it made a real difference for him.

I still need to achieve a better balance to my days, but I am spending time each day focused on me. It needs to be more of a priority, particularly so I can write more frequently on my blog (rather than finishing three posts started the previous Sunday and one new post all in one sitting). New curve balls come every day, but I am handling them better than ever. I need to remain vigilant, but I am hopeful that I can thrive by keeping myself, my family and my job in balance.

That said, I know that many rough days are ahead. But, a bad day does not need to become a bad week or a bad month. That has happened far too often in the past. I need to remain attentive to the here and now. Mindfulness remains my mantra. By restricting my frame to the present, I can allow myself the opportunity to exist rather than to drift between regretting the past and dreading the future. I know that my narcolepsy will never go away, but I certainly can find ways to maximize what I can do with what I have.

Best of all, this crazy pace means that my MOONS meeting this Saturday will arrive even sooner. AND, the National Narcolepsy Network conference is only a month away. I can't wait for either one. As much as I enjoy interacting with other narcoleptics online, I am anxious to talk with folks in face-to-face settings!

Lovely Ladies

Spending time at the Minnesota State Fair today reminded me that nothing is more wonderful than time with my wife and daughter. They are both incredible. I adore them, even when they are driving me nuts. The coolest thing is that my daughter is truly coming into her own. One of the buildings that we toured was the Eco Adventure. It promotes green products, alternative fuels, recycling, local and organic food. My daughter is the one who wanted to start there. She also was genuinely interested in what she was seeing. My wife also kept finding other things that excited her. We are going to have exterior work done on our house in the next few days and are having James Hardy siding put on. It is actually an eco-friendly product that uses recycled wood fiber and cement. Even cooler, though, is that we got even more ideas at the Eco Building for the things we might do next summer.

After our green ideas started to settle, we headed to the Fine Arts building. We split up, but the building is small enough that we ran into each other at times. I know my wife loves art, but it was glorious to watch my daughter process pieces. She does tons of art at home, and I could see her processing what each piece had in it. We had an amazing discussion after we were all done. All three of us had pieces that we liked and could articulate why. I am so blessed to live with such brilliant women.

Our next stop was the Education building. I thought nothing could top the Fine Arts building, but I was wrong. While a number of Minnesota colleges have booths in the Education building, the surprise was the vast amount of student work from young men and women across Minnesota. Some of it came from my daughter's school. As we look at the various art pieces, woodworking items, science projects, reports and creative writing pieces, I could see my daughter's brain spinning with ideas. She has incredible talent in a plethora of areas. Her hunger to create radiated from her as we moved through the building. I have the feeling that some art items and creative pieces may be on their way to next year's Great Minnesota Get Together.

Perhaps the funniest thing in the entire day, though, was watching both my wife and daughter plan their food menu. Both love to have fun with food. Plus, we bought the coupon book so they could get "deals" at a number of booths. Thus, we purchased food from some new places and both of them relished every new dish. They continued their odyssey later in the day. We came home for a time, and then I stayed. Their return not only involved more food fun, but they also watched the talent show for a second year in a row. Thus, they had tons of stories for me the next day. It was adorable to watch them both explode with laughter when they were describing a particular act - be it good or bad.

Many things in my life are incredible, but nothing surpasses these two amazing women. My wife is truly the best writer and editor I know. She is a rare commodity - a talented editor/writer AND a scientist. As a result she is an indispensable asset for the medical school that employees her. In fact she is moving into a new position and is finally being compensated at a level that reflects her immense talent. My daughter dazzles me daily. She creates gorgeous pieces of art, writes effortless pieces of poetry, teaches herself songs on our keyboard, creates amazing pieces on Garage Band AND loves to play. She reads avidly, and she throws herself into games on her DS and fun activities online. I can't wait to see where her journey takes her.

Narcolepsy has taken much from me, but I know that without it, I easily could have missed the best things in my life. This condition has forced me to recognize what is truly important to me. It has also slowed me to the point that I am able to appreciate the miracles around me every day. No miracles are most obvious than my stunning wife and my blossoming daughter. I am a lucky man.

Beautiful Beginning

Since the spring, part of me has anxiously awaited the start of the 2008-2009 school year. Some of my anticipation resulted from the realization that my course load last year was nearly disastrous for me. It also grew from my joy of returning to the ninth grade curriculum at my school (I adore mythology, Shakespeare, justice and the other major themes of the course). But, my greatest level of enthusiasm resulted directly from amazing co-teachers. Both of them are easily among the best 5-10 instructors at our school. Even more importantly, they put students first AND still manage to convey their content.

As we began this week, I tried to keep my expectations realistic. We had never taught together. We have a plethora of material to convey (three hours worth of content every day with only 90 total minutes available). We are dealing with over forty students at a time. Yet, even with those realities, my glee continued to percolate. Although I worked to dampen my own spirits, smiles kept erupting from the core of my being. In fact at least six or seven people commented to me that I seemed to be "better."

Now, I know that my narcolepsy is the same. I also recognize that I am coping with it better and have accepted my more of my limitations. Still, my team teaching colleagues fill me with joy. Basically, we never had a "successful" day, this past week. Over the past three days, we never got everything done. Regularly, we had multiple items underdeveloped. Worse, Wednesday focused half the class time on technology issues. Sadly, we couldn't even get half of the students logged onto the network. Yet, I have no option but to define the first three days of class as unmitigated triumphs.

I have enjoyed working with many colleagues over the years, but the only thing I that I can compare to my new team is my team teaching experiences at MITY. My two colleagues are phenomenal. They are brilliant, put students first, love teaching, enjoy laughter, understand how to balance discipline and frivolity, AND drive themselves to get better at their craft. I feel like all three of us are striving to own our biases and agendas. We are also refreshingly honest with one another - praising strengths and challenging weaknesses. Then, we add to this mix the fantastic ninth graders who arrived this week and everything just gets better.

Clearly, we have some super star students, but even those who may have some academic weaknesses seem to be ready to take on the rigorous attitude we are hoping to encourage. A long road lies ahead, but all of us seem ready to travel it together. Plenty of dark days will arise, but we are also trying to build skills that will allow both students and teachers to process those moments productively.

The other incredible issue has been the surges of energy that I have been feeling. I certainly pushed hard this week, but I also found myself have a decent reserve when I would arrive home. The narcolepsy is there, but my new course load feed me in ways that I never had last year. I must continue to work toward a sensible schedule and wise balance, but I also know that my colleagues and students will inspire me to remain healthy and to fulfill my potential. I am also grateful that both of my team teaching partners are already monitoring me to make sure that I keep things in perspective. The joy of this past week could easily lead me to foolishly drive myself into the ground by October. Needless to say, I would like to remain healthy and not miss a day of this school year given the potential that seems to exist within our classroom walls.

Mindful Meditation

I still want yoga to become a habit, but I also know that I need other ways to relax myself. My psychiatrist showed me a fantastic breathing exercise that I can do in two to three minutes and certainly some of my yoga exercises can be done for a brief centering routine. Still, I know I need something more substantial. I also realized yesterday that I have it! The Benson-Henry Institute at Massachusetts General Hospital specializes in Mind Body Medicine. A few months ago, I bought 3 of their CDs. While I had listened to parts of them, I had not "used" them until yesterday. While waiting for my massage, I put on my iPod and enjoyed track one of Creating a New "Now" by Ann Webster. It is fantastic and helped me relax muscles that were in terrible knots (the massage ALSO helped).

Even more exciting, though, was that it finally dawned on me that my teaching schedule for this next year has two perfect windows built into it that will allow me to meditate with Dr. Webster's CD or the others. I can do it DAILY if I want. Best of all, my internal reaction to that insight was joy, rather the guilt I likely would have felt even a year ago. My contract requires me to have a prep and four class periods. These windows are not a part of that. I will certainly choose to use them at times to do work for my school, but the key word there is "choose." That time is mine, and using it in whatever way is best for me - mentally, physically, emotionally - will be glorious. In the past, I know I would have forbidden myself from even considering using a time period like that for meditation. Now, I am looking forward to doing that. It is in moments like these that I think, "maybe I can overcome my hang ups." Of course, I know that the journey to do that will only take my lifetime.

Being aware of what is going on within me and living in the present are my two biggest goals for this next school year. By using these windows in my school day wisely (for correcting AND fulfillment), I will make it much more likely that my "schedule" blocks will work and be effective. All of this simply continues to build my enthusiasm for the coming school year. Hooray!

Missing Mother Nature

My wife, daughter and I are in northwestern Minnesota, staying with some wonderful friends. Today's plan was to head to Itasca State Park and do some biking. We could not have picked a better day! The sun was beautiful, the temperature stayed in a wonderful range, and the whole group had a fantastic time. Our friends have two boys, one a year older than our daughter and one a year younger. They all get along well, and today all of them held their own biking for close to six miles. Add to that the decent hills we all had to climb at times, and I admit that they impressed me. We made a great stop for lunch at Douglas Lodge, a beautiful historical site in the park. I HIGHLY recommend the Wild Rice Salad - it was delicious. We then biked the nearly six miles back, let the kids swim and even watch the children (and my wife) build a wonderful sand castle.

The entire day has served as a reminder to me that I need to get outside more. So often, I cut myself off from everything as a result of the narcolepsy. Fearing that I will push too hard or that I will wear myself out quickly, I avoid doing "extra" things. I LOVE hiking and biking through beautiful parks, yet I rarely do that any more. Certainly, some of that is the result of making other choices, which I often enjoy, but I do turn down plenty of chances simply because I am afraid. I definitely know that I don't like explaining how the narcolepsy tires me. I also dislike the feeling that I am a burden to others because I get so wiped out. Rather than risk those things, I often look for ways to back out (or simply decline the invitation in the first place).

In fact, I almost did it today. Some small part of me wanted to just stay at our friends' home while everyone else went biking. Fortunately, that voice was tiny. What was not minuscule was the voice screaming at me when something went wrong with my bike upon our arrival at the park. The stem of my rear tire ripped out. Worse, it was likely my fault. My wife was trying to inflate the tire and I am positive I told her the wrong way to do it. Nonetheless, my entire rear tire was flat and beyond repair. My immediate reaction was to bail on the ride. I honestly told everyone to go. Our friends then let us know that there was a bike rental and repair place at the next stop on the park drive. I did convince everyone to get started and told them that I would deal with the tire and go from there.

Yes, part of me still wanted to scrap the whole thing, but I mustered my courage and drove to the bike place. It was even closer than they thought. I still felt horribly sheepish, because I needed help (yes, I know that is foolish, but I am who I am). As I turned to look for a parking spot, I noticed that everyone else was waiting at the bike shop. I was furious, mostly because I was already dealing with it, but also because I still didn't want to be a burden. I eventually found parking and figured they had headed out. As I carried my bike toward the shop, I saw my daughter and wife and nearly melted down. I figured they had decided to wait for me and sent our friends ahead. The pressure of the entire situation came close to consuming me.

My interaction with my wife was more than tense and all due to me. It turns out the husband, when he realized that the bike shop was so close, figured he could get back to fix the tire before I left the other lot. I tried to apologize to my wife, but we both needed time (I did approach her a few more times throughout the day and all is well). The husband soon returned from his jaunt to the other lot. While my ego and energy were in tatters, I did accept the help. He fixed it in a matter of minutes. Then, we all set off for our excellent day.

While I certainly wish that none of the problems had happened, I am also grateful that they did. I need to learn how to accept help. I need to let others do things for me. Beyond that, I must recognize that sending everyone else ahead without me is not being brave and thoughtful. It is being selfish and cowardly. My family and our friends would have been worried about me and certainly would have missed me the entire time. By letting our friend help me, I allowed this excellent day to happen. If I had been wise enough to do it immediately, my wife and I would not have need me to apologize repeatedly. I do hope that old dogs can learn new tricks because I honestly want to do that. The best thing in all of this is that I not only opened myself to help, I remained open to enjoying the day. Certainly, I am tired and the narcolepsy crept in a times during the ride and the lunch, but I would have deeply regreted missing this day.

Helping Hands

Today, July 1, felt like my first day of summer. Not only was the mercury climbing into that uncomfortable range of high 80s (I may be Minnesotan, but uncomfortable heat can't be anything less than 88 degree - unlike many Minnesotans who balk at 80), but also I actually had a fairly relaxed day. Granted, I still had WAY too much on my internal check list (of which only a couple of items got ticked), but I did things for me today. I did that and still spent time with my daughter, provided support for my wife and even had lunch with a dear friend. Days like this make me remember that the concept of "balance" is not just a concept. It actually happens some days - I can NEVER count on it taking place, but everybody has good luck some time.

The aspect of today that grounded it so well was more time at Langford Chiropractic. I know that I rave about them often, but the entire staff is a huge piece of my coping. I continue to utilize the tremendous skills of my acupuncturist. In fact I saw her on Monday - that would be the 15 minute late appointment. She not only managed to get me in, but she also got me out on time. I'm late, but still got the full treatment and left with my day back on track. The best thing is that my acupuncturist managed to hit perfect spots for my high stress and low energy.

Today, I received equally impressive treatment from my massage therapist and my chiropractor. As I have written before, my muscles live in a constant state of tension. They have always been this way, but I know that my stimulants have made them much worse. Because of that I have an ocean of sympathy for my massage therapist. Incredibly, she is usually able to get most of my muscles to release. More impressively, she does that without "hurting" me. Do I experience pain? Of course, but even when she is working on the worst muscles, I know that the pressure she applies will allow the muscle to heal. Her strength is phenomenal. I was particularly worried today, though, because I wondered if we would ever move past my face. The two weeks of MITY took such a toll on me that even my jaw muscles were still clenched. Eventually, the massage progressed to my shoulders. Again, I wondered if my neck and shoulders would consume the rest of my hour. Fortunately, she did what she could (and it was fantastic improvement) and then worked on my back. She had actually joked that she would spend time "chiseling at it." Sadly, that is usually the case. I am blessed that she can do so much to remove tons of toxins from my muscles. I certainly left the room in a vastly improved state.

My chiropractor also managed to make exponential improves in my physical state. She is one of the clinic's owners and has amazing insights into how to improve someone's health. We often joke about the state of my back, especially because she knows that my massage therapist is unbelievable strong. Even my chiropractor was stunned today by how tight everything remained. Still, she worked out quite a few subluxations, even one in my neck that I didn't think she would get. Perhaps the best thing, though, is that I know she cares about my health, particularly in ways that only a handful of physicians have shown me. I realize that managed care limits what MDs can do, but I usually spend less time with my chiropractor than I do with them. Again, I often leave Langford Chiropractic grateful to have such excellent care providers.

Even the office staff brightens my day on a consistent basis. Since I am there every other week, most of the desk and financial staff know me. I am always greeted with a smile and am often asked about my daughter and my day. The entire clinic honestly feels like home. I know all of that is important to me because it is hard for me to ask for help. Without that comfort, I might not be getting acupuncture every other week and using massage and chiropractic work done every three to four weeks. Those three things likely do more for my "balance" than anything else in my life. They are the primary way that I am good to me.

Taking care of myself needs to remain a top priority. I wrote yesterday of prioritizing my life. My psyche is not good at acknowledging this, but I need to be my top priority. I am not good to even my wife and daughter if I am not emotionally and psychologically healthy. Certainly, I will continue to be as physically healthy as I can be too, but that situation is stacked against me. These non-Western approaches are fantastic tools in my maintenance of me. I must begin to reconnect with yoga (and exercise) because it bookends the acupuncture beautifully. When I was doing yoga and acupuncture together, my energy and spirit both reached wonderful heights. Until then, I will continue my trek to the Highland Park neighbor in Saint Paul to visit my favorite medical clinic!

Joy and Sadness

What a week! We regularly discuss the concept of MITY time at my summer program, but it has never been more visceral than what I felt this past week. Every day at the program seems to move faster than the next. This week was a blur - a fantastically wonderful blur. Our students produced incredible writing, presented their work marvelously at the class reading and grew together as a class. Best of all, the appreciated the gifts and the shortcomings of each other. They celebrated each victory and embraced each flaw. Of course they also had a fair share of chuckles over some errors, but even then they laughed with one another, not at anyone.

Even more impressive for me, is that my co-teacher and I never did get "on track." Yet, all of our students had an amazing time. Certainly, we instructors are still good in the classroom with our "B" game, probably even with our "C." The students, however, are the real reason that this year achieved new heights. Their work and editing with one another stunned me this year. The depth and insight of their critical comments unnerved me. The young women and men understand how to peer edit in ways that I never imagined teenagers could. Some of my favorite moments came in the last three days of class. A young woman, who has been in our class for five years, essentially started functioning as a third instructor. The two of us were tied up assembling the final book and the class reading program, so she quietly stepped in to aid us. I know that some of our youngest writers exceeded my wildest expectations because of what she helped them to realize.

Thinking on that, though, also reminds me that the final day of the class is also incredibly sad. The bond that forms at MITY in general, and in the creative writing class in particular, is breathtaking. So may of our students feel alone and isolated in their own schools and in their daily lives. Being at MITY allows them to feel "normal" because every other student is just as talented. There is still tremendous diversity, but instead of competing with each other, they inspire each other. As a result the students form lifelong friendships even though they only see each other for a two week period each year. Even I know that I do my best teaching in this two week period. Thus, reaching the final day can be devastating. I was particularly worried this year. This class began bonding before we even entered the room on the first day. Some of that is the fact that 17 of our 27 students were returning to the class. The bigger piece, though, is the culture that MITY fosters.

Another reason that the "final" day has become more difficult of late is that we now are regularly having students who have been in the class for five years in a row. Last year, we had our first two students reach the five year mark. Both had already graduated from high school. We also had a third graduated senior who was in the course for the first time. This year, we had four graduated seniors - all of them have taken the class multiple times (with two again hitting the five year market). Beyond those two we had one other person hit the five year mark, and unless something radical happens, she will be our first six year student. Six is the maximum number of years that any student can attend MITY. Basically, she will have been in the class for two thirds of our nine years come next June. And, out of those 17 returners, we had many four and three year veterans. It is insane. It is also painful to reach those final moments and to know that we all can't be together any more. Now, change is good (in fact, I think it is vital), but it is also extremely hard.

The two five year, graduated seniors who had their last class today are incredibly important to me. The young woman is the one who I mentioned above helping her peers. She has always been a person who has given to others. Even in her first two years, she was the student who "organized" our piles of books. She writes glorious pieces and showers love on all of those around her. I know that she will miss MITY, but I also know that we will miss her smile and her presence even more. Thankfully, she is already a dear friend, and I know that we will stay in contact for years. The young man is someone to whom I am even closer. He arrived five years ago as a timid boy who definitely did not "fit in" at his rural school. He credits MITY with saving his life; I believe him. I have seen his town, and it has nothing to offer him. He lived for MITY every summer. Thankfully, he has grown into one of the finest people I know. He will be much closer (geographically) to me while he is in college over the next four years. I am thrilled. He calls me his "second dad," and I can think of no greater honor. I would be blessed to have had a son as wonderful as he is. He also happens to be one of the best writers that I have ever encountered.

Even though I know that I will see both of them again, it will never be in this particular "MITY" capacity. In many ways it will be better, but it certainly will not be the same. I know that much of my frustration of the past two weeks was the fact that my narcolepsy was preventing me from being the teacher that I wanted to be for them. Now, they both read this blog. They are well aware of my condition and would tell me it is insane that I would worry about that. Still, I care about them so much and hate that I couldn't be more for them this year. The situation does underscore the same problem I continue to have at home. I can accept the limits of narcolepsy when the people affected are strangers or acquaintances, but the idea of disappointed those that I love destroys me. Of course the reality is that I will impact the people closest to me more than anyone else because I am around them more. I can't put others ahead of me, even if they are people I love, or better yet, especially because they are people I love. When I think I have disappointed those closest to me, I am so harsh on myself that I wind up hurting them even more from my woundedness. Thus, I continue to accept everything that narcolepsy brings my way.

Blessed Beyond Belief

While I remain aggravated about my own dearth of energy, I can't help but smile because I have the best job in the world. I was made to teach, particularly in high school, and get a huge rush from the daily opportunity to watch young minds at work. As wonderful as my regular teaching can be, though, nothing compares to the experience of working in Expand Your Mind at the Minnesota Institute for Talented Youth. Daily, I get the thrill of challenging the brilliant young adults. I am awestruck by their intellect, but even more impressed by their depth of character. My co-teacher and I have 27 amazing writers whose maturity and wisdom belie their teenage years.

My joy comes not just from witnessing their efforts to tremendous pieces, but more so from their passion for each other. Nothing gives me greater hope than spending two weeks each summer with such talented individuals. Their spirits radiate enthusiasm and kindness and mirth and earnestness and compassion and humor and love. Rarely does one find such a group in a life time, and I get to spend time with them every year. The faces change, grow older, move on, but the essence stays the same. Part of that is the atmosphere that my co-teacher and I create, but much more is the result of bringing phenomenal young women and men together. For so many of our students, MITY is the one place where they honestly feel "normal" (whatever that means). Instead of standing out as "the kid with the big brain," each student can shine for his or her talents. Plus, they finally have peers - ones that get their jokes and appreciate their insights.

More than anything, though, my MITY ones help me to become a better person and teacher. Every summer I learn more about myself than I feel that I ever give them in terms of knowledge. Their words - in poetry and prose - weave wondrous images. Their emotions are poured on to each page only to spring to life within the reader's mind. Better yet are the expressive interactions that fill the classroom from the first moment to the last. These incredible individuals bond as a family. They cheer for each other, edit for each other, celebrate for each other. No tangible rewards come as a result of this support; they simply want everyone to feel welcome.

My narcolepsy frustrates me to the core. It prevents me from engaging in EVERYTHING to the extent that I want (or at least that I think I want). But, it also forces me to slow down my world. As a result I can appreciate even more these amazing people in my life. On Thursday we went to the Minneapolis Institute of Art. The class was using the art to practice critical response. They also used the art for inspiration. I certainly enjoyed looking at images, but even better was watching my MITY minds probe great works as they sketched and wrote and pondered. It is beautiful to observe - essentially living art. If my narcolepsy didn't slow me down, I likely would miss seeing those moments. Later, I simply sat down to rest, and slowly I found many of the students gathering near me. They just wanted to be together, relishing the chance to share the quiet and their discoveries.

Narcolepsy is devastating for many of us. I am lucky that I do not experience cataplexy and that my meds keep me from falling asleep during the day. But, I am also lucky because this condition does force me to reduce my pace. I struggle to accept that fact, but it is true. More and more, I know what I need to do is accept my limits. Eventually, I will get there. Until then, I will likely rail against this condition in between moments of peace. I will also embrace my good fortune that has brought me to this glorious summer program.

Moony for MOONS

One of the problems when you are overly effusive in your praise is that you have no linguistic outlet when something grossly outpaces your frame of reference. Thus, you return to simple statements. Today has been the best day I have had in a long time. The MOONS meeting I attended today was better than I could have ever expected. While I was excited at the prospect of meeting others who "get it," I figured that the event would be good, but not life-changing. I love it when I am this wrong.

In typical fashion of late, I was...late. I once again missed my 1 AM dose of Xyrem. I took it at 2:30 AM. The irony this time is that I know I woke up to the alarm. I even took my methylphenidate ER tablet. But somehow, I passed out before getting to the Xyrem. As a result, I struggled to get up and still needed to pack for my trip to Osakis. I also made the decision to swing by ultimate practice to drop off my check for jerseys. Brilliant! I know that I will some day realize that humans without sleep disorders don't try to cram all of those things into a morning, and I will finally cut myself some slack. Sadly, it was not today.

Even with all of that chaos, I made it to the meeting by 10:15 AM. Things had not started, and I was met in the hall by a wonderful woman who turned out to be Dr. Eve Rogers, the physician who is co-organizing the group. We started and the young man who has been the driving force behind this effort outlined the ideas and basics. He also provided us with a great survey to explore what we want out of the group. Then, we moved on to our featured speaker, Elizabeth Nager - a therapist who specializes in patients with chronic illness. She only manages to get through a fourth of her prepared talk because people were so engaged with what she said and wanted to explore every idea more. I could feel the relief in the room and in myself as each of us realized that we were not crazy. In fact, we all heard, some folks for the first time, that the emotions and experiences of our lives with narcolepsy were normal and natural, specifically because narcolepsy is a chronic and invisible condition. The best thing is that she is willing to return to "finish" her talk. While I have know for years the importance of my own therapy, it was glorious to watch others make that same realization.

Although we had almost reached the end of the meeting, Dr. Rogers presented a plethora of fascinating material relating to new discoveries about sleep and an upcoming sleep conference. She also shared that the American Academy of Sleep Physicians declared in December of 2007 that modafinil (Provigil) and sodium oxybate (Xyrem). That is a vital piece of information that many narcoleptics can use to leverage their insurance company to pay for the meds that they need. I was in the presence of a physician placing patients well ahead of insurance and financial needs. Amazing!

Finally, as the meeting broke up, a few of us still hovered. A young woman and I shared our connection with Dr. Rogers and the organizer. We each chatted a bit about our own experiences and histories. We continued the dialogue in the elevator and all of the way to the parking ramp. The meeting ended just after Noon and the three of us didn't break up until 12:45. Then, the organizer and I traded more stories standing in the parking ramp until 1:25! I definitely made a new friend. I am also ecstatic to have found a genuine outlet for my desire to help myself and other narcoleptics. I can't wait until the planning meeting in July. I also think that MOONS can become a fantastic outlet for many of the narcoleptics in the Twin Cities.

As I drove away, I knew peace. I felt a deep satisfaction that I know will provide me energy and strength in my darker moments. I also know that it helped on my drive from Saint Louis Park to Alexandria. Two plus hours in the car - alone - is not always the best idea for narcoleptic, but I made the trip without a hitch. My friends the Barenaked Ladies and Mike Doughty helped me a great deal, but I also know that the energy filling me from MOONS factored in as well. I even know that I will be going to the September 6th meeting - even if it means that I need to miss the Heavyweights Tournament for tba (and it does). While I will be sad to miss out on a great ultimate tourney, I would be even more disappointed to not be a part of this incredible organization. I am even hoping to convince folks that we should offer smaller monthly gathering around the Twin Cities at which people can share their stories and simply connect. Heck, after today, I might even consider join the Narcolepsy Network and attending the national convention in October - it is in Milwaukee.

I am blessed in many ways, but the gift of today has been beyond the pale. To top it all off, I am in a hotel in Alexandria, MN hours away from watching one of my all time favorite students and friends graduate from high school. I am not sure why, but clearly God has decided to shower me with love (of course, I might have passed on the whole having narcolepsy part, but heck even that has its moments). In case you did not guess, I will likely write more (MUCH more) about MOONS. Just though I should warn you.