Many Main Man Moves

Greetings all! I have been absent from blogging for nearly a year, and it turns out that my blog site (Bite Size Life) no longer is functional. Thus, I have relocated to Wordpress.com. My new address is www.narcolepticknights.wordpress.com. I hope you will consider visiting me there. To those of you who read my site regularly, I apologize for my prolonged departure. Those of you who are PWNs likely get how life can completely shift on you, and suddenly things are out of control. As I did with the Bite Size Life incarnation of this blog, I will feed the five most recent posts back here. Thanks for checking out my thoughts about life with narcolepsy. Thanks from Main Man!

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.

Craft Craze

I had an excellent time today going to look at crafters. Unfortunately, my wife was too ill to join us, so my daughter and I ventured out alone. We needed to exchange a shirt at the aquarium first, which was also an excuse for my daughter to get an awesome funnel cake (it looked like a pound of powdered sugar!). Then, we headed east for the eight mile artisan loop. Since it was hot, we knew that we could not go to many places, but we did check out a few shops.

The woodwork and art that we found blew my mind. I am glad that we made the trip because I will now push harder to make it a priority the next time that we come here. Gatlinburg has amazing talent in this eight mile loop. We did make a few purchases, but I was tempted to get far more. Wisely, I realized that my wife would need to okay the larger purchases. It simply means that we need to return here again.

The best part of the day, though, was simply getting out. My sinuses definitely seemed to be better today. I felt good being more alert and having the chance to connect with my daughter. I continue to worry that narcolepsy will prevent me from knowing as well as I might. Gratefully, days like today remind me that I can find windows. I am excited to head home, but feel like I had a great vacation inspite of my medical woes. We have already packed most of our stuff, allowing us to plan for a 6 AM departure. I hope that I can be ready since I was the delay on both days of our driving down here. Tomorrow is definitely the "longer" day, but we should hit our worst stretch (Pigeon Forge - 5 miles in one hour) before anyone else is actually awake. We will stay in northern Indiana again, but booked a hotel slightly closer to Chicago. I like that I am ending this trip on an upbeat note. That has not been my previous experience very often.

Slow Startup

Today is our last day in Tennessee. We will rise early tomorrow and hit the road. While I am not looking forward to two days in a car, I am looking forward to getting back home. I feel good that I still have two weeks before I am back at school. I have oodles of things to do - at home and for school, but I will continue to approach them at the pace that I can handle. Today definitely feels similar to that. My wife went on a driving loop last night by herself. She enjoyed it immensely, but came home even sicker than she was. Thus, I am the only one up this morning. Hopefully, we will still try to visit some of the craft shops today, but I love that we can have such a relaxed start to our "final day." Far too often, a day like this is treated frenetically, cramming in activities for each waking moment. Instead, we will take in what we can and simply appreciate the chance to spend time together.

I find myself grateful for the many opportunities to slow down my life and expectations. My brain continues to push me, but I am getting better at letting go. I am even able to appreciate the fleeting moments when I do achieve a level of balance. Those moments are not nearly as frequent as I would like, but the fact that success brings joy rather than regret is a huge improvement. For years, a moment of serenity would bring angst rather than relief. I would berate myself for my inability to "feel serene" more often - how screwed up is that? Thus, I am highly content to lounge this morning, at peace with my upbeat outlook.

That said, I do need to find a bit more structure to my days when I get back home. The start of school is still three weeks away, but I need to begin adapting my schedule and routine now, since I know that a radical shift will not sit well with my brain or physical health. I also need to find a physical routine. The hiking and rafting has been great, but my body hurts all over as a result. More than anything else, I need to strengthen my knees. They are hurting constantly these days. I must spend some time over the next three weeks to get them ready for standing frequently during the school day. If I don't, it will be a LONG year. I find juggling exercise, my family, my sanity, and my job one of the most frustrating aspects of narcolepsy. All of them take energy from me, but all of them are vitally necessary.

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.

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.

Paying Penance

In the cosmic ebb and flow of my life, I knew a day like today was coming soon. Last night, for the third night in a row, I did not make it to my bed until "today" (meaning post-midnight). While it is summer, and I do not have looming deadlines, I can ill afford to get wildly off my regular schedule. The transition back would take me one to two weeks at least. That said, I am then faced with getting up after only one dose of Xyrem. That prospect is also rotten because I eventually get overly run down and cranky. I finally decided last night that I would actually do my second dose of Xyrem at 4 AM and would then be way off my regular routine.

Instead, I slept through the alarm until 5:15 AM. Since today is the opening show in my daughter's play, I figured I'd better not risk sleeping the entire morning away. Thus, I rose at 5:30 AM after only the one dose of Xyrem. Needless to say, I feel terrible today. My body is furious that I have not gotten nearly enough sleep of late. I also am feeling bizarre pains in the strangest of places because I have done little exercising this past week. I am so "off" that I actually had a sleep attack mid-morning while trying to do some work. I know it is bad when my sleep attacks are strong than 30 mg of amphetamine less than 2 hours after I have taken it.

Fortunately, the day has been extremely low key at our home. I had hoped to run some errands, but I realized mid-morning that it would be unwise for me to try. Instead, I simply plodded my way through some work for school. It was nothing more than data entry, but it will help us throughout the year. One of my greatest lessons from my narcolepsy is to accept the situation at hand and then to allow myself to adjust to it. Even a year ago, my day going sour would have derailed me completely. That would be bad on any day, but if I had lost my cool today, it would have been grossly unfair to my daughter (and my wife).

Underlying the normal zaniness of our home, a subtle (yet overt) pressure has been building all week. Tonight at 7 PM CDT, my daughter will perform with other children from her school - Wonderland! The Musical Misadventures of a Girl Named Alice. Given my daughter's personality, the tension would have been mounting even if her role was nothing more than a chorus member, but she is actually Alice in the show. She definitely has worked hard and is super excited, but her butterflies are likely the size of Mothra right now. AND, her mother (my wife) might be even more nervous. I have no doubt that she will be fantastic, but I also know that my daughter is like me, so she will dwell on every missed line and bad note. Our daugher will be on the stage for the entire performance, has approximately 300 lines, and sing the majority of two of the songs as solos. In other words, she is working her tail off the entire time. Having run lines with her, I know she will be spectacular and the show will be a hit.

But, even "knowing" that, it would have been unwise for me to risk coming unglued today. Beyond working on my few minor items, I tried to help my wife and to support my daughter. I also worked to keep the mood light. I suggested that we watch Shakespeare in Love. Not only is an "actor's movie" with all of the behind the scenes silliness, but also it is a great reminder that "it all works out in the end." As Henslowe says, we don't know why or how - it's a mystery. I think it is important for my daugher to have that in mind for tonight. The cast has first graders through graduated eighth graders in it. They also have NEVER had an uninterrupted run through of the play - the music director is a tad flaky. When the first "complete" run is on opening night, it can be unnerving. But I am hoping that my daughter can remember that as long as they smile, laugh, sing, and do most of their lines in order, everyone will adore the show.

My final regret in all of this, though, is that part of me wishes that I did not have to go tonight. Truth be told, I am too tired to appreciate it. Nevertheless, I would not miss this for the world. My daughter is far too important to me to let my narcolepsy get in the way. At the same time, I dearly hope that I will be able to forgive myself if I fall asleep at her show. I don't think that will happen, but anything is possible, especially the way I am feeling today. And, even as I write that I realize that I have yet to take my second dose of amphetamine for today - oops! I LOVE this crazy condition. I need to get those meds right now, but my error may just be the thing that keeps me awake through the entire show.

Partial Productivity

The last day or so have gone decently for me. While I do still feel adrift, I am having spurts of success when it comes to knocking one or two things off my ever-growing list. Beyond the finances, I filed somethings in our office, and I managed to get some tasks done for MOONS-MN. Most importantly, I got invitations out to others for the MOONS-MN gathering this coming Saturday, July 18. I definitely hope that a few people can make it. We are trying to have a few gatherings that are more social in nature because we know that many people want to have MOONS be more of a support group.

The best part about getting the emails and the U.S. Mail sent is that I will not feel any guilt or shame now, regardless of the turn out on Saturday. Had I been unable to accomplish those tasks, though, I am sure that I would have blamed myself for any failures (real or imagined) that might have happened. I definitely wish at times that I did not have this overdeveloped sense of responsibility. The reality is that I can only do so much, and I am honestly putting forth my best effort. I also feel good that I am making progress in helping get MOONS more organized - many hands truly do make light work.

One goal that I do have for today is to put closer to one thing around my house. I am not sure yet whether that will be our office (or at least the clutter on the desks - since there is MORE to do than I can accomplish in a day) or cleaning the kitchen completely. I feel like I am slowly wrapping my head around the idea of chipping slowly away at my many tasks. That is just one more piece of the lifelong journey that living with narcolepsy gives to me. I also know that I will need to spend some time this afternoon resting. My sleep last night was limited. Although I intentionally worked late, I still managed to fall asleep (post-Xyrem) in our office. Fortunately, my wife rescued me and brought me to the bed for a couple hours of decent sleep.

Birthday of Beauty

Today is my wife's birthday. Hopefully, I have done enough (and will continue to do enough) to let her know how much I adore her. One of my greatest frustrations with narcolepsy is that it often keeps me from doting on my wife to the levels that she deserves. She is truly amazing. Beyond putting up with me, my wife manages to excel at an incredibly difficult job, to provide tremendous care to our daughter, and to maintain our household at levels that dazzle me.

I do hope that other people have been able to marry (or to be partners) with their best friend. My wife is an amazing blessing to me. She supported me throughout the awful journey that eventually led to my diagnosis, and she continued to keep my spirits up when I struggled to find the right meds. But, beyond those things, my wife provides me (and our daughter and the world) positive energy on a daily basis. She is quick to laugh and has a glorious sense of humor. She can even been childishly silly, which I love because I can too!

Yet, her magnificent intelligent regularly awes the doctors in the Department of Medicine at the University of Minnesota. My wife edits articles and grant proposals, particularly high level NIH grants. And, she is exceptional at what she does. Every physician, or other professor, who works with her raves about her talent as a writer and editor. My wife even has two published books. While multiple authors worked on the books, my wife did a vast majority of the "final" writing. The first book explored how to create a research productive department, while the second delves into effective mentoring.

The most amazing thing, though, is that my wife's great talent has nothing to do with her brilliance. Simply put, my wife is the kindest, sweetest, and most earnest person I have ever known. She goes out of her way to help others. She is also loyal to a fault. In fact, she is so loyal that she will choose honesty over self-preservation. She calls out injustice and dishonesty even when she knows that it may cost her social status. My wife exudes grace and class.

In the end, though, my wife is a person who deserves far more than the world gives her. I wish that my narcolepsy did not make it so difficult for me. I would love to shower her with gifts and affection. She deserves to be placed upon a pedestal. While I know I can't give her much, I will hold her tonight and whisper sweetly in her ear. One thing I know, simply letting my wife know how much she is appreciated will mean the world to her because she is a saint!

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.

Fatiguing Fight

The thought hit me today that I expend tremendous energy battling my narcolepsy each day. Motivating myself to get up, pushing myself to exercise, forcing myself to bear down on a specific task, and stretching myself to be attentive to others (particularly my wife and daughter) are all doubly draining elements of my day. I truly want to do all of those things, but they not only take energy by their very nature, but also a second (actually initial) level of energy must also be exerted simply to overcome my inertia. Truth be total, my body and brain often seem to think that they would be most happy if I never left my bed.

Such a development would invariably be a disaster. I know my anxiety and depression well enough to know that even a couple of days of "nothing" would send me over the edge. My gray matter is constantly processing, thus with no outside stimuli, it would start to create its own. Having had a few other times in my life when my mind turned inward for "entertainment," I would like to avoid that FOREVER. Apparently, that big bundle of nerve cells in my cranium does fully get that it needs the rest of the body to keep functioning, since it has pushed the rest of me dangerously close to wanting to do something drastic. Fortunately, I am far more able to intervene when I can feel the irrationality starting.

None of that changes the situation, though, that narcolepsy not only makes my sleepy, but also it exhausts me because I have to push through it to "get going." I am sure it is the reason that I am an extrovert. I almost always dread starting - my day, my next project, a book, a conversation - anything. But, once I am engaged, I tend to gain energy for the interactions, even when it is something inanimate like a book. That is good because I think I would pass out if I did not draw energy from those activities. Of course, the catch for me is that when the stimulus is gone, my energy drops to much lower levels. My awareness to this reality has been heighten this week because I have been on the go a lot. I have had meetings and conversations for much of the past three days. When those have finished, though, I am always in a location that requires me to drive home (or to my next meeting). Certainly, I have felt tired other times when I have driven, but the fatigue this week has felt much more severe. It does not help that the burgeoning traffic in Saint Paul and numerous construction projects have made this the worst summer for traffic that I have ever seen.

I am not worried that I will fall asleep behind the wheel, but I am struck that each of my interactions have taken so much out of me. That happens at other times too, but I notice it less because I usually am not doing something as demanding as the driving that has followed each meeting or conversation this week. I definitely see it as another item about my narcolepsy that I need to tuck into my every growing file. I am also thrilled that this is my reaction rather than mentally beating myself up over something that is completely out of my control. Narcolepsy is something that I cannot "beat," but I also know that this is not about winning. It is about living and appreciating what I do have - every second of it.

Awesome Acupuncture

Although I am still feeling the effects of my bathroom sleeping experience, I am in a significantly better mental and physical state today. While my massage yesterday is definitely a piece of the improvement, another HUGE aspect is that I had acupuncture today. I tend to look forward to my acupuncture anyway (I see my acupuncturist every two weeks), but today was phenomenal.

Two weeks ago, Sarah (my acupuncturist at Langford Chiropractic) used cups on me for the first time. Essentially, she created a vacuum seal in a cluster of places on my back. It made me feel significantly better. I was sincerely hoping that she might want to use those again today, particularly because the cups did wonders for the tension in my upper back. While I might get cups in two weeks, Sarah decided to stick (pun intended) with acupuncture today. She did "shake up" my treatment, though. She also had to wait to use electrical stimulation on the needles until half-way through my session (she had another patient "hooked up" when I started my treatment).

The different needle placement certainly grabbed my body's attention. She placed a four or five needles down the center of my torso. She also insert needles in my right ear and in a few spots on my legs and hands. Even before Sarah hooked up the electricity, I could feel energy moving in my body. While I often experience that to a small degree, today was radically different. I had not felt this level of energy movement for years. The moment that truly stunned me is that when Sarah did bring the electrical equipment into the room, I thought she hooked me up with it "on." As soon as she connected the electrodes to the needles in my left leg, I could feel the electricity jumping between them and through my leg. But, Sarah had NOT turned on the electricity yet. The energy I was feeling was the natural energy of my body.

I am positive that much of the reason for this heightened success is that I have been doing yoga frequently with my Wii Fit. When I had this experience before during acupuncture (in 2005), I was doing daily yoga. Thus, the fact that I had such a similar experience in 2009 at the first acupuncture session after I have begun to get into a yoga routine again seems like much more than coincidence. Even though the yoga on Wii Fit is simply a series of poses, probably chosen more for the stretching, it is clear to me that I am much more in tune with my body. The excitement of this experience has me looking forward to doing even more yoga and working my way back to doing Kundalini Yoga once again (as well as the Wii Fit). Although I know that I need the Western drug that help to offset the conditions of my narcolepsy, I am thrilled that I continue to use non-Western techniques to manage the disease. Acupuncture is an important part of my routine. It truly makes a major difference in the quality of my life.

Fun & Free Flowing Fourth

Happy Fourth of July! Today was a good day in a number of ways. Even though I have oodles of things to do, I found a way to let go of those concerns and allowed myself to enjoy the day. Even better, I was productive this morning and completed the evaluations for the students in my summer class. Then, my wife and I had a fantastic time exploring the Trader Joe's that just opened in Saint Paul. We have had various items from Joe's in the past, but this was our first foray into an actual store. We were in a hurry, but were certainly impressed. I would have liked to see a few more gluten-free items, and Joe's will not replace my co-op, but the store does have many impressive items. I remain perplexed as to how they can offer organic and fair trade items at such low prices, but I intend to give them the benefit of the doubt, although I do plan to do some research just to make sure.

Anyway, after making some fun purchases at Trader Joe's we headed to the lake home of a friend's mom. Our daughter was already there. We then spent the afternoon relaxing, eating, chatting, and laughing with family friends. We even got to play in a bizarre family kickball game. The entire thing was a hoot. My daughter did have some tense moments, and my poor wife had to fight fireworks traffic (and ridiculously poor planning by the Blaine Police Department), but on the whole it was a great day for all of us. Even the late return time did not get me down because I got to see fireworks for the first time in years. I have no doubt that I will pay for a midnight bedtime for a day or two, but it is important to have fun from time to time.

The realities of narcolepsy make so many days difficult, but today was a sweet gift. I certainly was sleepy throughout the day, but the whole purpose of the day was simply to relax. Thus, it was perfectly fine to be sleepy. I am proud of myself for being present with the fun and low-key aspect of the entire day, rather than obsessing over the numerous things that I was not accomplishing. I do think that I am getting better at living with this disease. That idea might be the most freeing thought that I have had on this fantastic Fourth.

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.

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.

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.

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.

Wonders of Wii

I have loved video games my entire life. Growing up in the 70s and 80s, I experienced first hand the arrival of home video games. I also fall into the primary age group to have "lived" the hey-day of the video arcade. My summer before ninth grade, I spent hours nearly every day in the local arcade. While part of me regrets those lost hours, another still longs for the sheer joy of honing my skills at Galaga and Tempest.

Although I have own a couple of game systems as an adult (a Super Nintendo and a few "plug in" consoles that hold 5-20 games), my wife and I have purposely avoided purchasing any of the ever improving systems during the last 15 years. The primary reason truly is my inability to stay sane when I have a game system. Certainly, I chafe at the idea that I am incapable of remaining grounded when there is a game to "beat," but I also know that the decision has been a wise one.

Given my narcolepsy, I shudder to think the state I might be in today if we had purchased a Game Cube or an X-Box. Heck, I have even avoided computer-based games for the same reason. I have no doubt that Worlds of Warcraft would have stolen hours of sleep for weeks on end. In fact, I would be willing to bet that gaming easily might have masked the depth and extent of my excessive daytime sleepiness for at least four or five more years.

The irony is that I am writing this the day after I purchased a Wii system - with my wife's permission and approval. I might be a risk-taker at times, but I am not an idiot. While I do worry that we could eventually acquire a game or two that might tempt me into a few "all-nighters," I am more confident about my maturity and decision-making. The reality is that I know what happens when I push, and more often than not, I am unwilling to sacrifice the next two or three days simply to "enjoy" a little friviolity. Let's hope I am still saying that next month and next year.

We decided to get the Wii because I am struggling horribly to work exercise into my routine. I feel like I am finally beginning to learn how to balance home and work and me. That in itself is a massive accomplishment for me. But, I also know that I will be healthier, happier, and more complete if I can find even a modicum of fitness. Enter the Wii. My wife and I spent Saturday night with my sister and her husband. They have had a Wii for awhile, but this was our first couples "Wii night." Everyone had a blast playing a wide variety of games, but at the end of the evening I got a chance to try Wii Fit and the Balance Board. Not only did I find it fun, but I also realized that it could easily be a missing step in getting back into some type of exercise groove.

The beauty of Wii Fit is that I don't have to GO anywhere. My narcolepsy makes me so wiped out at times that the idea of driving to a gym, or even running to the lake a mile from our house, is simply not an option. I worry that I will exhaust myself. If I do that and then need to drive home, I risk my safety and that of others. If I do it and am now a mile from my house, I am foolish enough (and male enough) that I will still try to run home. Then, I will get sick. It happened repeatedly last summer with ultimate and with yardwork.

Instead of risking those things, I can now plug in my Wii and do some yoga and light conditioning work in front of my TV. It also "feels" like a game with vocal support from the etrainer. The Wii can't be my only exercise, but it is a perfect place to start. I would love to pretend that I am capable of pushing myself to establish a workout routine on my own, but I am not. I have nearly forty-one years of failure as evidence. I do best, in terms of fitness, when I am part of something. The Wii tracks my progress for me. And, the fat little Mii, that is ME, provides its own motivation. I know this is going to help me.

I feel blessed to have a wife who supports me so much that she is willing to change her mind about getting a Wii. I also am proud that I bought the Wii last night and have already used it twice to "workout." That is two more workouts than I have done in months. Pretty good for less than 24 hours. Still, it is not lost on me that while I am starting strong, I have done that before to taper to nothing within days. I believe this will be different, though. I need this and the exercise will take the place of some of my other recreation. Building up my strength slowly will also prevent my system from crashing. That is also a good thing (and a chance from the past).

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).