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.

Slow Sunday

Everyone got up late in our house today. As always, I was the first one up - Xyrem in a midnight and 3 AM means I am awake at 8-8:30 am. Today was no different. Of course, the physical exertion of cleaning up last night and the emotional strain of watching my daughter left me completely washed out. My wife finally arose around 10:45, and we got my daughter up at 11:15. I have no doubt that the stress of the play drained both of them. While my daughter loved the entire experience, she expended ridiculous amounts of energy, especially in the last seven days. As Alice, she was literally on the stage every moment of the play, and she gave to the audience for the full 95-100 minutes both nights. For my poor wife, the drain can primarily from insane nervous energy. I have seen my wife stressed about her own presentations, but that is nothing compared to her fretting over our daughter's performance. Since our daughter has definitely been bitten by the performance bug, I am hoping that my wife's anxiety will start to settle down.

Once we got up, we did nothing. I don't think any of us had much motivation today. We did decide to check out Harry Potter and the Half-Blood Prince. We loved the film, but even that trip to the film depleted the minimal energy that any of us had. I got home and felt like collapsing. Thankfully, my wife was able to let go of her own concerns about getting work done. I definitely would have found it more difficult to shut down tonight had my wife tried to push herself to do more work, partly because she has done a bulk of the work that was required from parents for the play. I sincerely hope that I can get back into a better groove in this coming week. I certainly have done a decent job, but I want to find a healthier balance in my work efforts and my exercising.

Although today was incredibly low key, it is wonderful to realize that we were able to have a day like this as a family. Far too often, we have isolated on days like this one. Or, one or two of us will be frenetic, while someone else shuts down. Rather than begrudging each other, we celebrated our fatigue together. As the PWN in the family, I truly appreciate that. As I have said many times, my wife and my daughter are the two people who I still worry about disappointing. Thus, days like today can be dangerous for me. Instead, today was heavenly.

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.

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.

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.

Money Madness (or Maddening Money)

Although I rarely discuss it here, money tends to be one of my largest sources of stress. I am almost ashamed to admit it, but money tends to have little meaning to me. That might be an okay situation if I were a single guy without a chronic illness, but I am a married man, a dad, and a person with narcolepsy. As a result, I definitely need to be conscious of my spending. I also need to provide assistance to my amazing wife. While she is certainly a better (and wiser) money manager than I, the reality of our lives is that much of the tracking of our spending has fallen to me. I am good at the "organizational" aspect of that, but I become quickly overwhelmed when it comes to the decision-making aspect of the finances.

Fortunately, I have only had a small number of complete errors when it has come to our money. We are also blessed in that I am able to supplement my wife's income because I can still work part-time. At the same time, keeping track of our bills and our expenses has gotten more and more difficult for me. To function in such a capacity, I need to be extremely focused. Unfortunately, I expend extensive energy to be that person. Thus, I am either neglectful of my other "duties" - being a husband, being a dad, being a teacher, and taking care of me - or I miss a bill payment here and there. Because of my commitment to living in the moment, the latter has happen more frequently than the former. While that is good, I think, it also sending my wife through the roof (and does not do much for my shame based thinking). We are attempting to shift much of the bill paying back to her, but she has so much else to do that it has been difficult.

The larger reason that this is on my mind, though, is the time and energy that I have used over the past two days. We need to change our "primary" credit card due to the merger of Northwest Airlines and Delta. For years we have used a Worldperks credit card to pay for many things. Our reasoning has been simple. We fly four or five times a year and using that card has gotten us at least one free (or reduced) ticket each year. Since we live in Minnesota, Northwest was our primary (perhaps only) option for the variety of flight times that we often needed. Now, Delta will be that airline. They only want one credit card option and like American Express. While I could care less which card it is that I am using, it is driving me insane to remember/discover all of the places that we have set up our current card as the payment option.

If I don't do this, we will either need to activiate the "new" card from our current bank simply to be safe. Then, any charges will go into a "new flex points" account for travel on any airline, but the AmEx card will get most of the charges, so we will never use the "flex points." Obviously, this is a minor issue in a world which is seeing a global recession, Iranian oppression, and numerous human rights violations. At the same time, it is driving my tiny brain into the ground. I have changed most of our pre-set card situations - I think. Still, one site would not allow me access, and another would not let me remove the defunct card. I added a new one, but the old one is loved too much perhaps. I bet it won't be so popular if I accidentally charge something to that card.

Even having gotten most of these updated, I am nervous about what I might have missed. The reality is that my narcolepsy undermines both my memory and my self-confidence. And, in the event I do miss some payment, I will get to wrestle with that guilt too. Hooray. Hopefully, I can let this junk go. The most important thing is that I am making progress on it. I also need to remember that we are extremely lucky to have a steady and solid income. As frustrating as these financials worries are (and narcolepsy is), we are truly blessed and want for nothing.

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).

Many MOONS Memories

Today was wonderful (and exhausting). Approximately one year after making it to my first MOONS-MN meeting, I presented my story. I also shared the many online resources that have been such a tremendous help in my journey. I honestly feel like the presentation went extremely well.

Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.

I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly "get it." The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.

I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.

Fabulous Friends

I continue to struggle with my energy, but I had a great boost today. Even though the early afternoon was filled with drizzle and clouds, I found sunshine in a Perkins in Edina! Four of us met there today to do some MOONS planning. While I had many other things that needed doing, I know I made a great choice today. Seeing my friends from the MOONS group made my heart soar. Even better, we actually got somethings done. Typically, we banter and chat so much we rarely get anything decided.

Today, we generated ideas for some social gathering. We also decided to vary our meeting times. In an interesting irony, when MOONS-MN first started, most PWNs present wanted to meet at 10 AM. While that seems crazy to me (and the other planning folks - we barely make it to the meetings on time), we wanted to serve the group. Lately, though, we have heard that some would like a later meeting time. Thus, we will still meet at 10 AM on May 30, but our meeting on September 12 will begin at 4 PM. The plan will then be to alternate between the two times. It should be fun.

As for the "social" ideas, we are hoping to have a yoga session (that could become a PWN yoga class), a bowling event, a family picnic, and another movie session. All of the events should be great, but the best part is that we are striving more and more to provide opportunities for PWNs to gather with each other and to share stories about this crazy condition. I also love that we spent time thinking about bigger issues, including suggestions for both Narcolepsy Network and for physicians who treat people with narcolepsy.

Still, the best part of the afternoon was spending time with friends who honestly understand the difficulties and frustrations of this disease. It is so hard to explain to people why I seem to be dragging or how hard it is to form a thought at times. With my PWN friends, we don't even owrry if someone drifts off, and we all regularly ask to have things repeated because we missed them. One of the strangest realizations of my day is that I "knew" none of the people I met with today one year ago. I still marvel at how much has changed in just 365 days!

Suddenly Sunny

I awoke this morning with a bit more spring in my step. I am still exhausted, and I need to work on balance, but the world seems brighter today. It doesn't hurt that the sun is out in Duluth today, but the bigger reason is that once again fellow people with narcolepsy have lifted my spirits. Last night, we went to see my mother and my grandmother. It was good to spend time with them, but everyone is also struggling. My grandmother's health has both of them concerned and on edge. Thus, my stress level was higher when we returned to the hotel around 9 PM. Fortunately, I remember that a friend of mine that I met through the Narcolepsy Network had planned to chat with me on Yahoo Messenger. Sure enough, she was there, but soon others joined us.

The webmaster for the Narcolepsy Network is fantastic, as a person and as a web guru. As a result, he has been able to garner the assistance of a number of quality individuals around the country to help moderate the forums and to improve the site. I feel lucky to have been included. Thus, my "brief" chat with a friend transformed into a full-fledged planning session involving people in Minnesota, Michigan, Washington (state), and Ohio. We were discussing ways to promote and aid local/regional narcolepsy support groups by providing them space on the overall Narcolepsy Network site. The group out in Portland, Oregon (and Vancouver, Washington) already has material up in this fashion for their P.A.N.E.S. & V.A.N.E.S. group. The idea is absolutely thrilling because it will raise the profile of these groups (including the MOONS group I help organize), and those groups will also be more prone to connecting with each other.

Beyond the support group planning, we also discussed ways to make the overall site and forums better. While it is a team effort, the driving force IS our webmaster. Seriously, the guy is a saint (and a rocking musician). One element that he raised last night is trying to get the doctor who runs our Minnesota group onto the forums on a regular basis. I think it is brilliant. She is likely one of the best neurologists in the country, particularly for sleep medicine. But, more impressively, she genuinely cares for PWNs and wants to do everything she can to help them, even when they are not her patients. Hopefully, she will be open to establishing a presence on the Narcolepsy Network Online Forums. We shall see.

Even these stunning ideas did not raise my spirits the most. The best thing about this impromptu meeting was the love and respect that my friends sent my way. They have all been working like mad to improve elements of the Narcolepsy Network sites, while I have done a few things here and there. Rather than be frustrated that I am not doing more, all of them were overwhelming grateful for what I have done. They all get that I am doing the best I can while balancing family, work, volunteering, and my own health. Since all of them are also PWNs, they also know that the condition ebbs and flows. Each person was overjoyed that I was "back" in more of a groove, rather than chastising me for what had not been accomplished. I am certainly blessed to have both the Narcolepsy Network and these quality people in my life.

Tuesday Travel

I head home today. I always find it fascinating that no matter how much I enjoy traveling, heading home is also exciting. Even though I was with my wife all weekend, I missed being with her the last two days. I also have missed my wonderful daughter. Knowing that I will see them both later today excites me to no end! I also enjoy the "process" of traveling.

While being at the whim of a transportation company can drive many people up a wall, I actually enjoy it. I know that some of that is my acceptance of narcolepsy. In the same way that I can't control the way my body responds on any given day, I also have no power over the functioning (or non-functioning) of a plane or train or bus. As a result, I am able to let go and simply accept what comes. It has taken a long time to reach that place. I used to be furious when trying to go somewhere if things went awry. But, it is one benefit of chronic illness - I daily have to face "things" not going the way I want them too. If I tried to fight every one of them, I would be insane by now.

Even yesterday was a great example. A dear friend and I planned to meet for dinner. Since I am in Maryland and can avail myself of decent public transportation, I took the Metro red line to meet him. I knew the trip would take 45 minutes, but that was fine. I was not inconveniencing the friends putting me up, and I could enjoy the ride. The Metro went well, and I arrived in White Flint with time to spare. The troubles began when I walked out of the Metro station. I seem to have a knack for always guessing the wrong way to go. I was meeting my friend at the White Flint Mall, but walked in the opposite direction. When I eventually arrived back at my starting point, I again chose poorly, but did manage to find the mall while working my way back to the start once again. In total I walked for an hour, probably covered at least 3 miles, wasted most of the energy that I had, and was a half-hour late in meeting my friend. While I was definitely frustrated, I did keep both my self-loathing and my ire at the lack of signage in check. I even found a book for which I had been searching. Even better, I bought it at Barnes & Noble rather than the Border's in the White Flint Mall. I do like Border's, but they had irritated me of late because they did not have this book when they promised that they would. Had I not done all of that walking, I might purchased the book at Border's instead (which would have bothered me), or worse, I might not have found it at all because maybe the White Flint Mall Border's also would have let me down.

I proceeded to have a fun night with my friend. He then drove me back to the place I am staying. That was good both because we got a chance to talk even more and because I don't know if I would have been alert enough on the Metro to get off at the correct stop on the way back. Gotta love narcolepsy, huh? Bottom line, I know that I need to appreciate the blessings and gifts that do come my way, even as I accept the hiccups and disruptions that accompany the good. Nothing is perfect, nor will anything ever be. But, I have so many blessings, and for that I am grateful. My constant sleepiness will be a bane for the rest of my life. I can't change that, but by accepting it (like the delays that may happen as I travel home today) my life will be a much saner and much better experience.

Lazy Lounging

After a fantastic, but frenetic weekend, I find myself enjoying a relaxed day with friends. My wife flew home yesterday (and I miss her terribly), but I am staying through Tuesday with some of of my college friends. We had a wonderful dinner last night and play a super cool game - The Settlers of Catan. It is sold in the U.S. by Mayfair Games, and I was impressed looking at some of their other offerings too. Likely, one or more of their products will be appearing in my own home soon.

This morning, I slept in for the first time in weeks. My body still is quite angry about the beating that I gave it on Friday and Saturday, but it was also good for me to learn that I can still do some physical things. I am not obsessing over the possibilities (which is good), but I do have some new motivation to find an exercise routine. It was tremendously humbling to realize how much endurance and strength I have lost in the last few years, but I went into the weekend knowing that such epiphanies awaited me. Rather than feeling depressed about what I couldn't do, I am pleased with what I could do. I still made some good plays. I even ran with a person or two who is likely half my age and NOT a person with narcolepsy. So, that has to count for something. I even scored a goal, threw a score, made some defensive plays, and had at least one impressive catch. That truly is impressive for a 40-year old man with narcolepsy who has done virtually no physical exercise (other than lots of walking as a teacher and yard work at home) for over 8 months.

Another positive from the weekend is that I wisely decided not to play yesterday. We had at least one game guaranteed on Sunday. It turns out that the team we played was super spirited too. While it would have been a blast to play a few more points, I know that today would have been vastly worse if I had played. When I awoke on Sunday morning, I knew that I had nothing. I find it difficult to describe the sensation, but essentially I knew that my "tank" was empty - even the reserve supply that exists for fight or flight. Once my amphetamine kicked in, I was functional and could have played. But, the exertion would have made me even more washed out today. Narcolepsy tends to manifest differently for so many people. I am sure that when I push as hard as I did this weekend - mentally and socially, I use up energy that is supposed to go elsewhere in my body. Last year, I got sick the few times that I pushed through the way that I felt yesterday. Thankfully, I am getting better at listening to my own body.

The finally irony of today is that it is gray and rainy in Maryland. Rainy stopped literally minutes before our first game on Friday. We then got three perfect days for ultimate. Well, they were a tad windy, but the sun and warmth were glorious. Now, when the tourney is over and most of my friends have gone home, the weather is gloomy and colder. But, that is also a great reason to lay low and rest. I don't feel like I should be running around to "see the sights" in D.C. with weather like this, but had the sunshine of the weekend continued, I definitely would have felt some level of guilt. Thankfully, I can simply enjoy the presence of my good friends. I will also get a chance to see some other friends this evening. I must admit that this is a great way to spend my spring break.

Many MOONS Moods

Today was wonderful. We had a fantastic MOONS meeting. I find it incredible that gathering with other PWNs can provide me such joy. Some of them I know, but many are still strangers to me. Yet, simply being a room and knowing that a majority of the people there experience some of the same ridiculous struggles that I endure makes me smile.

I also find it fantastic that I learn something new every time we gather. Today, Dr. Eve Rogers shared her Narcolepsy Basics talk. Invariably, she need to cut some sections of it, but everything that she was able to present was riveting. One of the most stunning pieces of information for me was the connection between hypocretin/orexin (the protein missing in PWNs' CSF) and temperature regulation. My night sweats can be unreal, and I also have periods of time that I feel feverish or chilled. Suddenly, it seems that I might have yet another aspect of my health that is connected to and undermined by my narcolepsy.

The other super cool thing is that I get to see some of these folks again next week. Tomorrow is the start of Sleep Awareness Week. It culminates with Suddenly Sleepy Saturday. The National Sleep Foundation decided to connect sleep awareness with the beginning of daylight savings time. Thus, when we "spring ahead" on Saturday night, March 7, everyone has a chance to glimpse briefly some of the fatigue and sleepiness of narcolepsy. To celebrate the day, our MOONS groups has decide to hold the first (annual) Suddenly Sleepy Saturday. We are going to bring blankets and watch a movie. We will also have some pizza and a cake (Dr. Rogers' birthday is the day before our event). While I am thrilled that we are having an "event." Much more importantly, this gathering will be the first purely social MOONS activity. I am definitely hopeful that we will continue to provide both educational and social events.

Ebbing Energy

New year, old issue. I spent the entire week reminding myself that "re-starting" is terribly hard for me. I don't regret anything from my break, but having two weeks "off" from my normal schedule was devastating to my ability to function at school and at home. My daughter was sick on Monday, so I missed the first day back. I still got up and tried to work, but I did not exert the energy that I would have at school. The rest of the week, I limped through school and crawled through my evenings. I got the bare minimum done each night, and I still have a ton to correct that I had hoped to finish over the break. Finally, I spent the entire day yesterday attempting to find some enthusiasm and verve. Didn't work. I made a small amount of progress today, but the correcting remains untouched.

My frustration in all of this is that I continue to experience the same things over and over, AND I let them get to me each time. My angst around the current fatigue is not nearly as bad as it has been in the past, but I am still upset. I am also struggling to get work done, work that must be finished soon (hopefully some of it tonight). Even as I type these words, I have more "unresolved" tasks flooding my head. I am realizing that I will be lucky to get comments on even a handful of papers. But, that will be better than nothing.

I must continue to accept what I am given and let go of what escapes me. One paper corrected is one less that I will need to do tomorrow. Plus, I made a difference for at least two students last week with the extra help that I provided them at school. Ironically, I participated in a Gallup survey today. The phone call was humorous because I felt like I was all over the place with my responses. I am definitely in a healthy income bracket and know that I live a good life, but I am also unhealthy and depressed - both because of my chronic condition and because of my anxiety. At the same time, I had to remember when I got off of the phone that I am incredibly lucky to live the life that I have. We have a beautiful house and savings. Both my wife and I are blessed to have jobs that we love, and our daughter receives an excellent education at her school. So, even though narcolepsy makes my life far from simple, I am blessed to have so much. It does not change the agitation that I often feel from my low energy, but it does help to ground me in my daily living.