Bite Size Blogging

Apparently, today is moving day! As I mentioned in my previous post, Bite Size Life is a promising, new location on the web for narcolepsy support. I have been intending for sometime to get my blog transferred there, but the stars refused to align. Suddenly, as so often happens in my life, everything came together within an hour of my previous post. Thus, Narcoleptic Knights can now be found at www.narcolepticknights.bitesizelife.com. Hopefully, I am bright enough that I can continue to have the posts I write there, show up here too. The good news is that ALL of my Blogger posts are already on the bitesizelife. com site! Hooray! I do hope that this change does not cause major problems, but I am excited for a new adventure. Also, I am more determined than ever to provide some live blogging from the Narcolepsy Network conference. Cheers!

Jetting to Jacksonville

I awoke this morning in a huge hotel room. The national Narcolepsy Network patient conference begins today in Jacksonville, Florida; I arrived late last night (technically, early this morning). While I remain uneasy about being here, I must confess that my beautiful view of the Saint John's River certainly makes me glad for the break from my daily grind. I also know that I will enjoy many aspects of the conference. Hopefully, I deepen some of the friendships with other PWNs that I began at last year's conference. And, many new PWNs await me as well.

At the same time I could not help feeling loss and regret as I ate during my layover in Atlanta. More than anything, I want to help and connect with other PWNs. While this blog does that, my primary outlet for the past year has been the Narcolepsy Network forums. At least it was until mid-September. I deeply believe that the work of some dear friends in those forums is a huge reason for Narcolepsy Network's recent upswing in membership. Certainly, the number of people using the forums exploded during the last year, but I also know that Narcolepsy Network saw tremendous growth in paid memberships during that time as well. Unfortunately, the people most responsible for making the forums a welcoming and safe place for PWNs will not be with at this conference, nor do they oversee the forums any longer. I remain utterly bewildered as to how the people running Narcolepsy Network could be so obtuse as to not understand the vital role that those forums and individuals have played in the organizations sudden expansion.

The crux of it all for me is that I see the internet as a PWN's most vital tool. Few of us are able to find doctors who truly understand our condition. Although many larger areas do have local support groups, most PWNs need far more connection than a few meetings a year can give. Those factors, added to the reality that many PWNs literally know no one who has their condition until they find a support group (if they can find one), mean that the internet is the one location that a PWN can interact with other PWNs on a consistent basis. Up until mid-September, I would have believe that such a reality was obvious to everyone associated with Narcolepsy Network. Now, though, I have serious doubts.

My experience at last year's national conference was incredible. Certainly, being some place where I knew that 300 other people truly "understood" narcolepsy was a primary component of my joy, but far more significant was meeting face-to-face with many of the people that I had meet online. I am guessing that I will have a similar reaction this year. But, what vexes me to no end is that I doubt that other PWNs will get to have that opportunity in years to come. Since things changed on the Narcolepsy Network forums, I do not see the same level of interaction and vitality there. In fact, it is strange to see that in August the forums were adding 20 new members within 2 to 3 days, but now it might take a week or more to add 20 people. My observation is not researched or vetted, but it definitely seems like the energy in the forums is diminishing.

Clearly, I would love to see my friends back running the Narcolepsy Network forums, but deeper than that I honestly saw those forums as a way to improve significantly life for other PWNs. So many of us struggle to interact with the world because our enery is so limited. But, going online takes far less effort, and one need not drive somewhere to do it. I left my position as a moderator on the forums because of the way my friends had been treated, but I also did it because I did not (and still do not) trust the decision-making of the current board when it comes to Narcolepsy Network's online presence. If they honestly had no idea how active and energetic their forums were, it is a sad reality. Certainly, many other online support groups for narcolepsy exist, but Narcolepsy Network's advantage was (and still is if someone can right the ship) that they are a federally recognized non-profit with a national convention. Adding a strong and lively online community to that would make them the best resource anywhere for people with narcolepsy. Now, I wonder what will happen.

Of course, I could be crazy. Narcolepsy Network might have thrived in the past year due to some other reason. Only time will tell. Also, the other support groups, particularly the Facebook Narcolepsy Support Group and a new site Bite Size Life, might adequately fill any void created by the changes at Narcolepsy Network's forums. Another definite possibility is a group in Second Life called Slumber Society. In the end, though, I need something for me. Selfishly (which I need to make a priority more often for myself), I need to find something that will give me the same fulfillment that my moderating on the Narcolepsy Network forums. Yes, I could "ask" to become a moderator for Narcolepsy Network again, but I will not work for the people currently "in charge" of the forums. As far as I am concerned, they haven't a clue about running a forum effectively. I also know that I can't afford to put in the energy that I did over the past year only to have it ripped away again. Thus, I find myself in limbo. I need to help other PWNs; it is something I do well. But, I also am struggling with my own energy so much that I do not have the time to figure out where to put my (currently non-existent) "narcolepsy support" energy. Time will eventually guide me in the correct direction, and I have learned enough to allow myself to trust the process. Unfortunately, that does not lighten my current mood, nor does it mitigate the hurt that I still feel from the events in September. Still, I know this chapter is just one more lesson that narcolepsy has for me to learn.

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.

Trouble Tracking

Today has been odd. I know that I got things done, but I just don't feel like I did much. I had trouble getting going this morning. Some of that is residue from this weekend - I know that Mondays are hard when I have pushed during the weekend (and that definitely happened between the anxiety and the excitement of the play plus the physical exertion of striking the set). I also know that some of my discomfort today is connected to the numerous things that I feel looming in my life. Whether it is work for school or the multitude of house projects, there is much to do and the time is slowly dwindling. The hardest part is knowing that I probably can't get to everything that I would like to do. Well, that and the fact that I want to finish everything within a day. I do find it funny that my baseline is still, "I should be able to do that by the end of the day." At least I know it is ridiculous, but I still experience some emotional push back from my subconscious.

I did manage to take care of a few things for school today. Mostly, I got our writing curriculum books to two of my three colleagues. Hopefully, I will take care of the third person before the end of the week. I also did a little shopping for myself, and I had a great conversation with a couple of friends. While those interactions were unplanned, there were wonderfully refreshing. I just wish that I wouldn't do my mental calculus after them (I just spent 30 minutes talking to that person, which means I can only get to this now...). Just one more aspect of my anxiety and my narcolepsy having a little party in my brain. More than anything, today is reminding me that I need to set schedules for my days like this. As nice as it is that my daughter does not have rehearsal every afternoon, that event forced a small amount of scheduling into my days. Now, things are too open, and I run the risk of that paralyzing me. Hopefully, tomorrow will feel more productive. I also have some time tonight that I can use to my advantage.

Finally, I need to mention that I did advocate for myself today. My wife just scheduled her conference for October. While we knew that her annual medical writers conference is in direct conflict of my Narcolepsy Network, we have already planned that we are both going to attend our conferences. However, when she mentioned signing up for hers, I then asked if we could get things in order for my conference. I definitely hope that we can do that soon. While it is not much, knowing that I have a flight to Jacksonville and a hotel room will take some pressure off of the many things on my mind. Silly, yes, but real.

Foolish and Frustrating Fourth

What a difference a day makes! I knew that I would pay a price for staying yesterday (and for not worrying about the energy that I was expending), but I had no idea that level, extent, or immediacy that the payback would affect my entire family. Narcolepsy reared its ugly head and brought along some other friends as soon as my day began today. We all got up slowly because we had gotten home so late. At the same time, I knew that my wife desperately wanted to get us all to Church - we have missed Mass far too often of late. Even though my body had NO interesting in getting going, I was determined to get moving so we could get to Mass.

Our daughter was far less enthusiastic about the prospect of Mass, but she did hope into the shower after my wife's quick shower. Unfortunately, my daughter stayed in the shower until minutes before our agreed upon departure time. My wife, who was rightfully cranky given our late night and the horrid traffic on the way home, let us both know that she was frustrated that we were likely not leaving at the agreed upon time. Hoping to mitigate the situation, I decided to forgo a shower (since there was NO way I could take one and have us leave on time), but I also resented that fact and that my daughter was not being respectful of the time or my wife. Nonetheless, we were ready to go at 9:35 AM which had been the agreement. Unfortunately, I could hear my daughter and my wife still exchanging comments before I even left the house. Since I was already frustrated and upset, their fighting only exacerbated my own angst, but I knew that my wife needed me to stay "upbeat" so I stuffed those emotions too.

My daughter continued to push my wife, even after my wife said the discussion was over. As a result, we had gone now more that a quarter of a mile and were sitting at a stop light. My wife then chose to mutter more negative and general comments under her breathe. I, of course, heard them. I had already been fighting the urge to scold my daughter for her behavior, and the reality is that I had not wanted to go to church in the first place. In fact, I was struggling to understand how we could be on our way to church when we were clearly being extremely UNchristian to each other. Finally, my fury over the fact that we had stayed late because of my daughter (which she had already forgotten) boiled over. Rather than blow up in the car (and make things worse), I got out of the car and said that I was going home. Of course, that action only served to make things worse, particularly for my wife, who was already feeling unsupported and disrespected. By the time I had gone a block and a half, my wife had turned around and had returned to get me. Her tone and behavior told me that she was not going to let me walk home, so I got back in the car.

We were then silent all the way to Mass. My nerves were a tad frayed because my wife's driving was a bit aggressive, but I was also furious because I did not want to be there and because my daughter's behavior had been at the core of much of this, yet she was oblivious to that (as she should be at age twelve). As my wife shut off the car, she asked us to go into the church without her. I said, "No." She then told me she needed the time, and I still declined because, "I am only here because you want me here." The statement was true, but was not fair to my wife. I also realized later that a deeper concern was also behind the response. I was worried both about what my wife might do (she was horribly upset) and what I might say to my daughter.

I have struggled a great deal in the last few years with how to talk to my daughter, particularly when it involves my narcolepsy. She has actually told me, twice, that I use my narcolepsy as an excuse. She, of course, has NO idea how hurtful that comment is, but my mind reels at what might have happened had I gone towards church with my daughter, but without my wife. If I had tried to talk to our daughter about how her behavior (and ours) had led to the fight, particularly the fact that we had stayed so late because our daughter was bent out of shape when we tried to leave at a reasonable time, I know that she would have lashed out at me. Given where I was at, I have no doubt that awful things would have ensued.

Fortunately, Mass was wonderful, as it so often is. Both my wife and I noted that the opening song was all about forgiveness. We did have a long conversation when we got home. At one level, all is forgiven, but the tenor of the conversation also impacted me in another way. Clearly, I hurt my wife today, and she hurt me. We also need to do a better job of helping our daughter understand our expectations of her and of her comments to us. But, we have been trying to do that. My wife and I both know that we need to do "more," but neither of us knows where we will find that "more." Certainly, we will work through our fights and forgive each other and our daughter. That does not change the reality that sitting in the middle of all of this is the narcolepsy. My wife DOES do more of the housework and planning. She is already tapped out by full-time work, ful-time parenting, and full-time partnering. I, too, am doing my best, but I have a chronic condition that limits my abilities. If I put too much into my work, everything else suffers. If I neglect myself, everything else suffers. If I dote on my wife or daughter, everything else suffers. Such is the nature of a chronic condition.

The deepest lesson out of today is to continue to let go. I control little of what happens in my life. Bad days come, sometimes sooner, sometimes later. I knew that having fun yesterday would exact a cost, but I was unprepared to face it when it arrived because I didn't think it would come like this. I need to be more honest with myself and my wife. I should have voiced my concerns about church the moment we got up. Even better though, I should have helped my wife figure out what might or might not happen if we stayed late yesterday. Better still, would have been for all three of us to agree to a plan well before the Fourth of July ever arrived. By doing that, we would have all had clear understandings of how the day would play out. What I con't do is let a day like today cause me to only worry about what might come. I also need to keep pushing myself to enjoy the moment. I think my realization of that is progress in and of itself. I have no doubt that if something like this would have happened even a year ago that I would have sworn that I would never stay out past ten PM. That is, of course, unreasonable and irrational, but it tends to be my baseline reaction to "mistakes." I have made numerous mistakes in the last two days. I need to own them, ask for forgiveness, forgive myself, and appreciate the good things that happened in between my errors. I am not "feeling" that yet, but at least I "know" that it is a far more appropriate response. Hopefully, I will continue to learn as my journey continues with my narcolepsy in tow.

Today, though, that attitude is hard to maintain. I am wiped out in general, and then I got way off my current sleep schedule and spent tremendous amounts of energy wrestling with my thoughts and emotions today. Things will get better, but I feel like I am once again muddling through a Sunday, barely doing anything productive, and wondering how I will find a decent groove to be healthy and mildly productive in my life while not grossly upsetting my wife and daughter on a frequent basis. I deeply dislikes days like this!

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!

Friday Fury

I long for the day that I will be "ready" for a day. My sister, my daughter, my brother-in-law, and I were scheduled to leave at Noon today. We are spending Easter weekend in Duluth, hoping to see my grandmother and my mother (who is in town to help care for her). Even though we had a plan, I wound up derailing it for a time. Everything was fine, but it bothered me that my inability to get things done, or to garner any energy, forced others to wait. The true "problem" began on Thursday.

Invariably, I ran myself ragged yesterday. I did enjoy my abbreviated massage, and the chiropractor helped. After that, though, I headed to the University of Minnesota. My wife and I had a fun (but dorky) date. We met at her office to attend Grand Rounds. Dr. Mike Osterholm was speaking about influenza pandemics. It was incredible, but going to that meant that other things did not get done. I did rest at home for a time, but then I had to get my daughter. After that, I tried to do some cleaning around the house. Things look worse now, but my wife seemed to think that it was progress. After working for an hour and a half, I had to head to my daughter's school for a three-hour meeting. I got home at 10:30 PM. Needless to say, I had no energy for any more cleaning, or for packing.

Then, when I woke up this morning, I spent an hour and a half getting work done for the previous night's meeting. I did do some additional organizing of computer files (and dumping of files to clean out my laptop), but I was not ready to leave until nearly 1 PM. Again, it was not a huge problem, but I feel such internal pressure in those situations. I abhor inconveniencing others. Fortunately, I held things together. We arrived in Duluth around 3:30 PM, which was actually perfect. I just hope that I can let myself relax over the next few days. I remain vulnerable to my internal messages about doing more and unachieving.

These are the narcolepsy moments that I truly dread. I am doing "fun" things, but the energy required for them also drains me. The balance of living with this condition is often maddening. I am grateful that my wife and daughter remain understanding. I need to keep working on giving myself more of a break when I am in the midst of energy struggles like I am having this week. The one other tough part, though, is that my wife is out of town from tomorrow until next Saturday. Thus, I will get home on Sunday with professional work that needs to be done, volunteer work that needs to be done, and housework that needs to be done. I will face all of that as a solo parent and as a run down person with narcolepsy. It will be fine, and I will get done what I can, how I can, but I need to remember that I am doing a decent job, even if things turn out mediocre at best. In the end, I need to remember to breathe, while I handle each thing one step at a time.

Yin Yang Year

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

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

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

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

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

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

Merry Madness

I ended the medication holiday this morning. I didn't get out of bed until 9 AM, but part of that was waiting for my daughter to get up. How cool is it that my daughter was the last one to wake up on Christmas morning? I have a super cool kid. We had to wait to go out to the kitchen and living room because our daughter wanted to see our reactions. Apparently, she decorated from midnight until 2 AM. It was impressive! She made a wonderful banner and set out ALL of her stuffed animals. So, I took my first dose of amphetamine at 9 AM.

The most amazing thing, though, is that I only took 10 mg. I did take a second dose at 3 PM, but once again it was only 10 mg. I know that I would have needed more if I had been teaching today, but I love that the medication holiday worked well enough that I could take a third of my typical dose and feel highly functional all day. We had a glorious time opening gifts this morning. We then got going on work. My wife did nap, but I managed to keep going throughout the afternoon. I washed dishes, cleaned the bathroom, put a number of things away, and even organized a huge pile of stuff that has been sitting around for months. The work was spread out over hours, and I made sure that I did not overdo anything. Still, I am stunned by my level of productivity.

The best part of the day came this evening. My folks are in town and arrived around 9 PM. I was still finishing up some of my sorting, but it was awesome to talk to them. My sister and brother-in-law also decided to hang out for a while. We will all be together again tomorrow for a second Christmas (yippee). More than anything, though, it was super cool to connect with my parents in a relaxed way. I also got the chance to show my dad number of things on the computer - TED talks, iTunes U, Radio Heartland, and the final broadcast material from MPR's Morning Show. He was stunned, and I was thrilled that I provided him some meaningful items that he will truly enjoy.

I need to get to sleep, but it was a great day. I was already pleased with my medication holiday, but the realities of today clearly proved that I made a brilliant decision in taking the time off from my amphetamine. Clearly, the break from my stimulant has helped my body in a number of ways. Best of all, I know that a third of my normal dose gave me plenty of energy. It is incredible to learn that a brief respite from my regular routine can have such a drastic impact on functionality.

Conscience Comments

Somehow, another week has passed. I never understand how time can fly so quickly. The good thing is that I have been "healthier," although I was unable to fulfill the exercise goal. I do not feel guilty however. I will simply make exercising three times by next Friday a primary goal for this next week. I do know (quite clearly) that I did the absolute best that I could over this past week.

Beyond eating better, I definitely got tangible things done within our home. I changed a number of light bulbs, organized a number of music files, cleaned areas of the house, and did my normal chores. Even better, while I likely will never feel like I have done enough for school, I not only got things ready for the start of our new trimester, I even managed to correct the first quiz I gave within 24 hours of receiving the answers. I also know that my entire team felt "in synch" as we started our new material. That alone is enough to brighten my mood. One of the greatest accomplishments, though, is my own recognition of my need to stay on task when I am teaching in our classroom. I actually steered students back to the topic at hand throughout the week, fighting the urge to be tangential. Words truly can't describe how impressive that is for me.

Our current unit is an introduction to the concepts of conscience, leadership, and authority. We will actually study those theme throughout the trimester, but this first week has been incredible. We read the Orson Scott Card novel, Ender's Game, which I adore. Most of my students truly seem to enjoy it, thus far. It is perfect for our themes. Even better than the book, though, has been the chance to see these amazing, young women and men wrestling with the ethical and moral issues that we have placed before them during the past week. While we are all still human, greatly influenced by the culture of excess in the United States, I have appreciated seeing some of our teenagers make deeper and powerful connections about how they are both moved by their consciences to powerful acts and forced to betray those same values when certain social realities come into play.

Beyond the successes at school, I feel good about what has been happening in our home. My in laws left on Tuesday. It was wonderful to have them here. I definitely feel like I got the chance to grieve more over my brother-in-law. At the same time, with my wife's parents returning home, we have been able to re-establish some levels of normalcy for the first time in weeks. We have no gifts. Life is not in crisis. There is no dumpster in our driveway. I think we will make a few more strides this weekend when it comes to organizing the base elements of our lives - bills, financial records, storage of unneeded items. It thrills me that we could eventually find a minimalist way to exist.

At the same time, my brain continues to be overwhlemed by the multitude of things that I have left undone. Yet, my greatest source of pride this week is that I have not allowed that negativity to overwhlem me. Certainly, I have dark moments each day, but I acknowledge them and feel them, then I let them pass. No one could do the things that I "think" I am supposed to accomplish on any given day. Thus, as a forty-year-old with narcolepsy, I must forgive myself for not doing the impossible. I still feel overly run down and sick. My sinuses are definitely misbehaving. My anxiety and ill-health have not been the dominant element of my week, which is incredible. It is moments like this that I know I am "improving." A week like this, even eight months ago, would have sent me spirally. Radically, my primary feeling tonight is honestly elation. I am proud of the way I weathered the week. I am even more excited that I could feel this satisfied in a week when I was far from "on." I have no delusions that I will ever be "well," but I do know that I am capable of having weeks that are far more healthy than the one that has just passed. This journey of narcolepsy continues to amaze me. New discovers seem to lurk around each corner. While there are plenty that I have found less than pleasant, this new one was a welcome relief.

Curious Questions

The continued chaos of my life regularly leads me back to pondering what is the right direction for me. I know that I need to stay active. If I don't, I worry that I will be overwhelmed by the anxiety that constantly builds up within my brain. But, I worry that I will drive myself into the ground. Even though I have gotten significantly better at saying "no," I am still too willing to over commit myself. Helping others is deeply important to me, but I need to work on boundaries.

That said, I continue to wonder if teaching is the right place for me. I do love my job, but I also worry constantly that I am not doing enough for my students. Rationally, I know that I am doing good work. Certainly, I am doing the best that I can, but is it enough? Am I providing the instruction that my students deserve? More importantly, I need to examine the impact of those feelings on my psyche. Worrying about what I am doing does not help my mental health. I am proud that I am handling my insecurities well. While I do have dark moments each day, my prevailing mood is upbeat. I do know (and believe) that I am doing the best that I can each day.

Even that knowledge, though, trips me up. If this is the best I can do, and I can't keep up with the minimum expectations of my job, is it responsible or ethical to continue in that profession? I don't have an answer, but the issue is regularly on my mind. I have much to offer my students, but I also need to ensure that they are getting the instruction that they deserve. The realities of all this far exceed my abilities. I truly do not know what is right or wrong, or if an answer even exists. What I do know is that I will continue to do my best. I will find what energy I can and parcel it out as fairly as possible.

Amid it all, I do realize that I must take more for me. I need to exercise. I need to do yoga. I need to have time and space that is mine. How that will fit with teaching, parenting, volunteering and loving, I have no idea. My life will be what it will be. I will breathe and move and sleep and live.

Sleepy Sadness

So much has happened this month, and yet I fear I have no words. The days and weeks have literally gotten away from me. I also lost track of my job, my other responsibilities, my health and any sense of schedule. Worst of all, my wife lost one of her brothers. Her youngest brother choked on a sandwich and no one knows how long he was deprived of oxygen. He was on a respirator for ten days. Finally, he was taken off. No tests done while he was on the respirator gave any indication as to how he would react. The assumption was that he would likely die. But my wife's brother has thrown folks curve balls his entire life. In true form, he remained in a coma, but began breathing naturally. Then, 36 hours later, he died.

Complicating things even more, the death came on my daughter's birthday. My wife left for home on Saturday and will return to Saint Paul on Thursday. My wife stayed for my daughter's birthday sleepover, but it has been good for her to be with her family. The visitations and the funeral were good, and I know that she is feeling more at peace with this. I am still feeling the loss. I know I made the right decision, but I also regret that I could not have been physically present for my wife and her family.

All of this has drained me even more. At the same time, I have been more productive in the last few days than I have been in a month. I see that as a good sign. I know that I need more time for me, but am struggling to find it. I need to sleep more and must find a way to let down. Having three days off next week will definitely be a welcome relief. I also think that the grading that I will need to do at the end of the trimester will be lighter. It definitely feels good to write again. My goal for the end of this year is to establish a clear pattern for exercise, yoga and my time. I need to take much better care of myself. If I do not, I know that I will be unable to do the job that I love so much.

Odd October

So often, I feel like time's relativity only increases in speed. Somehow, though, this past month has not only flown by with exponentially increasing acceleration, but also it has lasted an eon, or two. If that sounds completely paradoxical, imagine what it must feel like. Usually, I am wondering where the month went, but for the past week, I have had to remind myself that it is not yet November. While a portion of me does wonder where the past four weeks went, another section can seem to grasp that there is still one day left in this month - October. All of it seems complete bizarre.

Surreal as the month has been, I know that some of my confusion results directly from my narcolepsy. I find each day so exhausting that each one honestly can feel like a week. Yet, even with that, the memory issues that tend to accompany my sleepiness do make it seem like I have lost a day here, or a week there. Beyond the condition, though, the month has been bizarre due to the multitude of activities in my life.

I am trying to reduce the stresses in my life, but feel like I am losing that battle. My responsibilities to my daughter's school seem to be growing, as are my commitments to my various narcolepsy communities. Beyond that, my job is far more demanding from a physical standpoint this year. I am a great deal happier, but am also finding myself far more drained than I did last year (when I sat around and watched movies most days). Finally, the extensive renovations taking place at my home, coupled with the conferences that both my wife and I attended (one apiece), have made for a wildly rich and diverse month. I do find this sensation strange, but I love that for once, I do NOT feel like I lost every other day (or more).

Starbucks Success

Once more into the breech, dear friends, once more. Taking my sanity into my own hands, I ventured forth today, returning to the nightmare of Maple Grove's shopping insanity. Wisely, I brought back up, another MOONS group member who lives in Saint Paul. The sky loomed ominously of my car during the entire trip, but I had no fear. My gas tank was full and my faith high. We arrived at the Elm Creek Blvd Starbucks, knowing full well that it was THE ONLY one on that stretch of road. Almost immediately, we spotted friendly faces. Turns out, MOONS was having a planning meeting!

The afternoon was fantastic. We certainly got sidetracked at times, but people with narcolepsy should be allowed some latitude. Plus, it was wonderful to have only a handful of us with Dr. Rogers. She is wonderfully intelligent, and I can easily see why her patients in the group adore her. Often, a topic would come up, and Dr. Rogers was more than willing to share what she knew about that particular medication or treatment. Even more rewarding, though, was the collegiality among the MOONS member there. We can all see the potential of the group, and it felt awesome to lift some of the organizing weight from the shoulders of Dr. Rogers and Charlie. Those two have bent over backwards to get everything going. Now, some of us can provide assistance to help the group become even better.

Even though the next meeting is not until November 15, I am already excited. This group, along with the online resources that I have found, has been vital to my own acceptance of my narcolepsy. I feel such joy getting to know other people with narcolepsy. It is glorious. I feel blessed that I can have a chance to help others in the same way that I have been aided. I also know that my joy as stems from the reality that I will see some of my MOONS friends in less than a week. Milwaukee approaches rapidly, and I can not wait. We will theoretically have another MOONS planning meeting there because we will be doing some MOONS work at the hotel - making web site changes, working on the database, planning a group presentation for the next meeting. I love it!

I knew that today would be significantly better than my last trip to the madness of Maple Grove, but once again I am stunned by how incredible MOONS has left me. It truly is magical to be with a group of people who implicitly understand the bizarre frustrations of this disease. Nothing can compare to it. And to think, in less than a week, I will not be with a few other PWNs like I was today, or even the 30-40 PWNs that are at MOONS meetings. In Milwaukee, I will be with over 100 other people with narcolepsy. That boggles my mind!

Hope Happening Here

Today, perhaps for the first time ever, my therapist could NOT stop smiling during our session. It was truly incredible. Of course, it might be that nearly everything I said at today's session had a positive tone (or at least undertone). When I was thinking about today's session, while at school yesterday, I felt nearly giddy. I look forward to therapy because talking out my issues grounds me. The difference last night was that I knew that I was bursting to let my therapist know how well things have been going. The sensation is incredibly odd.

As I left my therapy session, though, I realized what I was experiencing. For the first time in years, I am actually feeling hopeful. Even more importantly, it is not a "pie-in-the-sky" hope - believing that with just a few changes I will start doing yoga for an hour each day, or that I will tweak a couple of meds and be able to work full time again. Those thoughts aren't even dreams, they are delusions. What is percolating inside me is - the belief that I will make a difference, the possibility that I can accomplish worthwhile tasks (even with a chronic condition), the reality that I am far more than a bizarre medical condition. I don't know if anything feels quite this good.

As I mentioned above, I don't see this moment as an end. If anything, it is the true beginning. Now, I can start to walk honestly with my disease and discover ways to honor it while still confronting it. Narcolepsy is a part of me, but it is certainly NOT all of me. In fact it isn't a big percentage. It make keep my energy down, but my heart and soul and mind are MINE. And, this disease can have no part of them. I know that many dark days will be on my path, but I fear them less and less. I merely need to put one foot in front of the other, and I will continue to walk my path as best I can.

Perhaps one of the things that has given me the most hope in the last few months is communicating with other people with narcolepsy online. I had made such incredible friends throughout the world. It is a huge blessing for me. When I read about a woman in the United Arab Emirates struggling to find out about narcolepsy, or the young woman in Singapore who has taken control of her own life and medical condition, my spirits soar. Some people praise me for my kindness to them. I am honored and flattered by their praise, but even more so I am inspired by their courage and determination to face this disease and the societal scorn that can accompany it. Their journeys give my own even more purpose. At some level, having narcolepsy is worth all of its hassles purely so I can be lucky enough to know other people with naroclepsy.

Place of Peace

I am struck lately by the calm that I am often able to find. Even on the most frenetic days at school, I am now able to close my eyes, breathe deeply and relax. It doesn't always work, but since it used to NEVER work, I definitely think this is progress. I know that with regular yoga in my life, I will not only get better at relaxing, but I will also become quite adept at purposefully loosening specific muscles. Wow, do I need that!

The other thing that I love is that I am able to carry some of that stillness in my heart and soul these days. Certainly, I am a basket case much of the day (as I have always been), but even in that frenzy, part of me knows that things will work out in the end. Just today, my carefully crafted lesson on Gilgamesh did not go the way that I wanted it to go. In our first class, the students asked tons of questions which forced me to continue the lecture into the second period. I love that they were interested, but as a result of that, they wound up with more homework than I had hoped. It got even crazier in the second class. I was more efficient in my lecturing, and the class essentially had the entire second class period to work. But, the computers decided that they had done enough for one day. So, hardly anyone could get to the appropriate website. In both situations, while I was frustrated, I simply rolled with the realities. I tried to help my first group as much as I could, floating from group to group and checking their progress. With the second class, I actually had them put their computers away. Instead, I read them the sections of the story. We even answered the questions together. They too wound up with more homework than I had planned, but I think that is okay.

Just months ago, I honestly believe a day like today would have done me in. Instead, I managed to run some errands, get my daughter to volleyball and even write a few blogs! Hooray! Something is happening for me, and that is good. I am well aware that my narcolepsy is not going away. In fact, all of this has happened even though I am fairly exhausted these days. That said, though, I know that I am starting to understand the real base line for myself. I am also feeling motivated to make a difference with what I do. The driving force for that impulse is me, which is even more important. So often in the past, I have tried to be a better teacher, or dad, or husband, or person for other people. I know this time, I am doing it for me.

Missing Mother Nature

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

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

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

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

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

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

Better and Less Blah

I wanted to let folks know that posting yesterday did help, a little. I still am not able to internalize the "good" of my work yesterday, but it did help me accept the frustration. Even more importantly, I was less upset this morning when I realize that my wife stayed up half the night getting the house into pristine condition. She truly is amazing! At the same time, a huge piece of me wanted to scream - at me! She should NOT have to lose hours of sleep just because of my inability to function well. That said, I did not scream. I did feel some guilt, but far less than I expected. We even had an excellent discussion in the car. She told me that my efforts had allowed her to get started. Since the kitchen was vastly improved by my work, she felt like she could take it the next step. Plus, she assured me that she stopped after each task and weighed the prospect of continuing.

I was also able to repay her, but driving for the last two-fifths of our trip today. I knew I would be fine, but also knew that my sleep had been off, so I was a tad worried. Nonetheless, I got us to our friends' place safely and allowed my wife to rest. She is having a great day, and I too have enjoyed spending time with people we love. Likely, we will be biking in a State Park tomorrow and then let the rest of the day unfold as it will. I have even managed to get some prepping done for next week. We will see what tomorrow brings.

I know that the rest of my days will be spent facing the challenges that narcolepsy brings. I also know that some days will simply be awful. What gives me hope is that I am slowly getting better at not just accepting my condition, but also recognizing and accepting the emotions - good and bad - that arise in this journey. I do wish that I could feel elated when I have a productive day, but I can't - not yet. Whether it is an unwillingness to be satisfied with lowered expectations, or the ridiculous perfectionism that has plagued me throughout life, I am not pleased with what I got done yesterday (or today). My brain knows it is great, but my heart and soul remain unconvinced. I can't change that other than by repeatedly articulating (to the world and myself) what IS good about it. All of this philosophical rambling does give a new meaning to "Independence Day" - at least for me! Enjoy the fourth and the fireworks. I will be in bed when they being and likely asleep before they end, but that is one decision that even my perfectionism and sub-conscious KNOW is right.

Balanced and Blah

So, I had a productive day - sort of. I mowed the lawn, watered everything, got more dishes done, prepped a bunch for my next MITY class, spent time with my daughter and even got the bike rack on our car for the trip tomorrow. I also managed to rest, a few different times during the day. On the whole, the day certainly was as close as I could ask to being a good day. Yet, I felt out of sorts throughout it.

I don't want to analyze why I felt that way. I know, rationally and logically, that today went well. I also know that my sub-conscious mind and other deeper parts of my psyche are still not open to accepting a day like today as great, or even good. that reality certainly won't change tonight, or tomorrow, or probably even next week (or month for that matter). I do know that I need to acknowledge the feelings. I am trying not to be frustrated about my reaction to the day. It is what it is. Getting mad at myself won't change that, nor would it do me any good to pretend like the day was wonderful from an emotional standpoint.

What I hope is that by writing this blog, I can own the day - all of it. I achieved much. I would like to praise myself for that - and mean it. For whatever reason I can cognitively recognize the "good" in my efforts, but I can't open myself to joy such activities should engender. Rather than rage about my inadequacies, I simply want to acknowledge my sadness about this. By sharing the situation I think that I will eventually be more at peace with my narcolepsy and the ways that it is changing my life. We will see.

Lucky in Love

After I posted on Saturday, my evening took an ugly turn. My wife came out to try to get me to come to bed. We were both painfully aware that I had pushed too much over the previous week, and she was hoping that I would actually get to bed before 11 PM for the first time in a week. I was too. The problem arose from her making a lighthearted, but irritating, comment and from me taking it completely the wrong way. She said, "don't you want to be with me?" Now, I adore her, but I had just spent the last three hours with her. I had also gone out to get everyone dinner even though I too was completely exhausted. Sadly, I did not find her comment amusing. Instead, I thought she was upset with me. I overreacted by storming to the bedroom and slamming around the house. As one might imagine, my wife did not appreciate that behavior, especially after a week of neglecting all of my household responsibilities.

I did attempt to discuss the situation with her that night, but she needed more from me than I could give. I was also unwilling to apologize for getting upset at her comment. Thus, I went to bed, and she eventually followed. The added irony is that the next day was our seventeenth wedding anniversary. Upon waking Sunday morning, I got my breakfast together, mad her coffee, and then went back to the bedroom, planning to make sure she knew how much I love her. We proceeded to explore the events of the evening, the disappointments of the previous week, and possible ways that we can avoid such volatility in the future. As strange as this may sound, it provided a perfect beginning to our anniversary. We communicate well most of the time, but even after seventeen years of marriage (preceded by our and a half years of dating and engagement), we constantly push ourselves to find even better ways to connect.

Of course, my narcolepsy factors into all of this. It did before too, but in some ways things are even harder (at least for the time being) now. Previous to my diagnosis, if I was struggling with my workload, I could say and hope that I would find a better way to get the work done. Most of the time, my sense of conviction came from believing that I could push even harder than I was. Now, though, I know that I likely can't push harder. I can for brief periods, like I did last week, but the price is a period of even more extreme exhaustion - and that certainly won't help me get my share of the housework done. The other "problem" of late is my tendency to explain to my wife and my daughter that I didn't do something, or exploded, or wasn't listening because of my narcolepsy. This realization jumped out at me during that Sunday morning discussion. My wife and daughter are painfully aware of my condition. They don't need me reminding them of it, just as I don't need others doing that to me.

Please don't hear this as a wish that I was still undiagnosed. I know that my interactions with my wife are already getting better as I continue to discover how to accept this condition. Even more importantly, the narcolepsy has slowed me to the point that I do need to listen to what she is saying so I can find the right ways to approach her. Before my excessive daytime sleepiness became unbearable, my solution to upsetting my wife was to be super husband - clean everything I can, do all of the chores, dote on her endlessly. That route is no longer an option, and quite honestly I know she was underwhelmed by it - but, she knew I was trying.

More than anything, I need to find a way to do a little bit each day. By setting patterns and maintaining a good (and realistic) base line both my wife and I will be happier and more joyful. We both recognize that I am unable to do half of the housework. She is not asking for that. More than anything, she wants me to be present for her and our daughter - to listen, to hold, to love. Do I still need to get something done? Of course. My wife was already the primary financial support for our family even before I went to a part-time schedule. Now, I bring in about a fourth of our income; she brings in three-fourths. Given that, she has tremendous demands and pressure on her at work. If I don't help manage the house, it looks like a garbage pit within a week.

Which brings me back to Sunday. Our house is still recovering from my MITY focus last week. Things are a bit better today, and I still have some energy left. It is so humbling to realize that entering financial information on a computer and cooking a pork roast can sap most of my energy, but that is my reality. The goal must remain that I do what I can and take pride in that. I am not worried if it will be enough for my wife. Anything I do will thrill her because she does know how hard all of this is for me. I am truly blessed in that regard. So many narcoleptics have families and spouses and partners that question the validity and extent of the fatigue. Instead, my wife showers me with praise for everything that I do. Certainly, she has issues that need work in our relationship, but she is always seeking ways to improve. In fact one of the more interesting moments on Sunday morning came when she asked me what I need. She has asked that before and is always responsive to my requests. But, I tend not to have many. She mentioned that she must be doing a good job of anticipating my needs. I agreed, because she does, but I also raised the fact that I have never honestly explored my needs. Perhaps I will have a few more things that I need from her. It is all part of learning how to be good to myself while still recognizing my role within this marriage and family.

Sunday was a great day. I treasure the time I spend with my wife, particularly when we talk to one another so openly. My best suggestion as to how we avoid letting disappointments fester is that we start having those exchanges once a week. She loved the idea, but the execution of it needs to come from me. She can't feel like it is her responsibility, or the rewards of the dialogue will be lost for her; she will feel like she made me do it. Thus, I have a goal - I need to get time on the calendar for next Sunday. I need to share with my incredible wife. Most days, I wonder how I could be so blessed, but I am working simply to accept my good fortune rather than use it as another way to denigrate myself.

P.S. Dr. J. Steven Poceta commented on my last post and has written about this blog on his own for Revolution Health. I would be remiss if I did not let all of you know that he has tremendous insights. I checked out his blog and am now subscribing to it. He discusses a wide range of sleep issues, but in my opinion insights for sleepy folks with sleep apnea and restless leg syndrome certainly can benefit narcoleptics as much as insights for sleepy folks with narcolepsy. Thus, if you are looking for other material to help in your own struggle with narcolepsy, do check out the Sleep Expert.