Slow Startup

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

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

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

Fighting Frustration

I have not slept well (or much) the last two nights. While that is NOT a good thing, my mood today is surprisingly upbeat. I know a piece of that is that I had a good meeting with my psychiatrist today. He is quite down-to-earth, but has also challenged me in the past to be kinder to myself. I think he easily saw today that I am definitely making progress in that regard. I also know that in that same vein, I am accepting that I have been up far too late the last two nights. Thus, the things that I accomplish today will be "gravy." I have to take that approach. I needed to stay up two nights ago to get some things done for MOONS-MN. Last night, the priority was getting the kitchen clean. That I did get those things done is a huge step for me. Hopefully, I will begin to keep such efforts within the frame work of "normal" hours for me, but it is also good that I am making strides in such areas.

Far too often, I get completely lost in "unstructured time." I definitely function best when my schedule forces me to be certain places at specific times. The rub, of course, is that having a ful agenda each day drains me far more than a day of relaxing. A huge piece of the equation is the fact that my brain rarely "shuts down." Summers are usually the worst because it can be weeks of "free time," during which my brain tries to run in hundreds of directions. Unable to accomplish a fractional percentage of my mind's inexhaustible list, I would then wallow entire days away. Although my aspirations remain far to large, I am getting better and better at releasing myself from that cycle. I work to accept my limits, while challenging myself to get one or two small things done. Slowly, I am adapting. Hopefully, it will continue, and I will stay balanced and healthy. I still remember the lessons of last summer. Every time I pushed too hard, my body quit as I ran a fever. I would like to avoid being completely laid out.

Fading Focus

Summer is always a curve and a blessing for me. I LOVE that I actually have "free time" because I need it to recover from the frenetic pace of my school year. At the same time, I hate it because I am terrible with unstructured time. I have been doing better this summer, but I have struggled for the last two days. My problem is that I lack the self-discipline (or perhaps the energy) to create a modest schedule of tasks for the day. During the school year, I am forced to create some level of schedule because my work fills specific sections of my day. When summer truly arrives for me, though, I have such open swaths of time that I regularly fail to pre-plan what I will be doing on any given day.

I also get terribly gun shy of planning out specific days. I know that I overestimate my energy and abilities, meaning that if I plan out a series of days, I will likely be "behind" from the moment I set my schedule. At the same time, when I allow myself to "see where the day will take me," I find myself accomplishing next to nothing. Because so many things are a "top priority," I am often paralyzed by my own brain. Worse, my inaction causes me to begin berating myself, which makes my more tired, and I become even more inefficient.

As I said, I am getting better at managing these things. In reality, my learning style (concrete random) and my personality type (ENFP) do not lend themselves well to carefully planned out schedules. In fact, they are deadly for me because my "random" nature means that I will eventually fail, and the "concrete" aspect of my brain will condemn me for that failure. Thus, I need broad plans, and I must accept any step towards the completion of those plans as progress. For instance, our finances needed to get up to date. In the past I would have tried to get it completed in one day. Although I did manage to do that from time to time (by locking myself in our office for 8-10 hours), more often, I would get to a semi-acceptable point and then would leave the finances unfinished - possibly missing a bill. This time, I chipped away at the finances over a four day window. I not only got caught up, but I also managed to enter information for my wife, and I figured out some of the stranger issues in our investment numbers. I even got paperwork filed today.

Unfortunately, even successes like that do not completely sink in for me. I consciously know that I did a good job, but I don't truly feel it. Instead, the hypercritical portion of my brain berates me for taking so long. It also reminds me that the office is still a disaster, and the investment numbers are still not fixed. And, pushing those thoughts away (or should I say hearing them and then dismissing them as irrational) takes tremendous amounts of energy, leaving even more run down. As a result, I then spend a few days, like today and yesterday, wallowing a bit and trying to get into some sort of groove with my daily routine.

The other two challenges of summer tie into that last issue. This time off often results in a different series of events every day. I have clearly learned that I am at my best when I can get into a pattern and am able to follow that every day. Sadly, I am convinced that it will be years until such a thing is possible during the summer for me. My wife's job, my daughter's activities, my doctor appointments, and my work issues mean that summer will remain a hodge podge of starts and stops in each and every day. Summer also means a great deal of isolation. While I do get to spend time with my daughter, many of my days involve long stretches of time when I am alone. Although I have come to appreciate some quiet time when I am isolated, the reality is that I am an extreme extrovert. Thus, being by myself drains me. Sometimes, that alone can totally wipe me out. On the other hand, I can be having the worst excessive daytime sleepiness, but come to life as soon as I step in front of a group of people.

As in so many other things, I must be patient as I move forward living with narcolepsy. This condition is insanely bizarre. I can feel almost normal one day and horribly tired the next. Worse, so much of my day (each day) depends on my sleep, yet I have NO control over that. Even when I have been in a great pattern of going to sleep and waking at the same time each day, one thousand and one tiny little things can positively and negatively influence my rest. Thus, I must take a deep breath, do the best I can, and not fret about the highs and lows. I just need to ground myself in the present and stay with each moment.

Groggy Gray Grumpies

I awoke today feeling like I had been run over by a car. There seems to be no definitive reason for this. I have not slept on any bathroom floors. I took both doses of Xyrem. I laid off exercising excessively for the last two days because I was feeling run down. Why in the world would my body be this sore? Then, I remembered - I tried to DO things this week. By that, I mean I had numerous meetings and worked on financial issues in our house. I also tried to do some housework and even spent quality time with my wife and my daughter. The most unnerving part is that all of that "work" resulted in me being even more wiped out AND the following:

• House is messier today than it was on Monday
• Lawn is still not mowed
• I need to make two phone calls - one to set up yet another meeting
• Our office is still not cleaned
• Our finances are not yet up to date
• Oodles of things need to get done for my job
• Oodles of things need to get done for MOONS-MN
• Oodles of things need to get done for our house - window stain, door paint, room touch up, blinds hung
• My wife is depressed, and more from me would help
• My daughter needs us to run errands and help packing for an overnight

I often find the hardest thing about narcolepsy is letting go of the shame and guilt that a list like this one can foster. I KNOW that I did a decent job this week, but it scares the hell out of me that my progress during the week resulted in everything getting further behind. I would love to pretend that I will just "work harder," but that is not possible. In fact, pushing too hard is what got me to this morning when I awoke feeling like I had been run over. It is a strange, sad cycle. And, if I am not careful, I can let it eat me alive. My baseline has always been an all or nothing approach. I throw myself into things, or I completely surrender. Unfortunately, that approach has never worked out super well. And, when it gets right down to it, it won't in this moment either. I will NOT get that list above done today, tomorrow, next week, or possibly even next year. I also will NOT give up my wife, my daughter, my house, my job, my health, or my sanity.

My favorite insight about life is that it is paradoxical at its core. There is always too much to do, that will never get done, and is always completed. If that makes little sense and complete sense, welcome to the world of paradox. Perhaps it is that one insight that lets my let go on days like today. I will not get all of those things, but eventually they will all get done (even if they don't). And, obviously, reactions and emotions like mine today are not exclusive to narcolepsy. It exacerbates the severity of my fatigue and my ability to do things, but each person has her or his limitations. Which is my second favorite insight - pain and struggle can never be compared. None of us will ever know what is like to be another person and face her or his challenges. Even if I met another almost 41 year old, male, English teacher, two years into his diagnosis of narcolepsy. While we might have some similar experiences, I could never understand his struggles. Thus, the challenge is to make peace with the good and the bad within our own bodies and minds. At the same time, it sure helps to have others in your life who at least "get it" when it comes to your own struggles. Thanks for reading and thanks for letting me vent a little. It might just help something get done today.

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!

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.

Funny Fallout

I always find it strange when I know that I am managing my narcolepsy better. The condition is so bizarre that it almost seems unwise to make such a claim, yet moments like today are plain and obvious. Thus, I must acknowledge the reality of life and my condition. As I knew, my decision to sleep a fractional amount between Thursday night and Friday morning overwhelmed me today. I spent the entire day lolling around my house. I did manage to get a small amount of work done, but the majority of my time involved working on a crossword, watching some DVDs, and exercising with our Wii. I have no doubt the exercising also added to my exhaustion.

Although I am pleased that I got some work done in the midst of my exhaustion, I am more excited that I did not feel guilty about the "undone" work. I found myself able to accept and to find comfort in that reality. I have time, plenty of it, for those other tasks. In reality, I have weeks to get to them. I don't want this initial list to take weeks, or even days, but in the past I would have tortured myself for not doing them today - immediately. Thus, I am content with knowing I have time.

The other element of the day that was exciting is that I had chosen to not "exercise" during the second week of MITY. The reality is that I did get some exercise simply from my "active" teaching style, but I did not work out. I love, though, that I prioritized my health over cleaning our office or putting away books. I have no idea if I will be able to hold onto that attitude, but it feels like a step in the correct direction. Hopefully, I will find a way to make working out a habit so I can carry it into my school year, but I also love that I am not worrying about that either. Needless to say, my exhaustion remains, but I am thrilled that I am letting go and learning to relax.

Wiped & washed out

I survived. In fact, I thrilled to a large extent. MITY wrapped up wonderfully. In many ways, my co-teacher and I were more on top of things this year than we have ever been. I truly believe that our class gave a tremendous reading. Each student delivered her or his best reading at the actual event. Plus, the book this year, while slightly smaller, seems to have better quality than ever before. I know that a piece of that is that I did more and better editing this year. Now, my brain constantly reminds me about the multitude of pieces that I did not provide feedback, but I definitely feel like I did the best that I could.

Perhaps the highlight of the session, though, came on our final day. I chose (and that is the truth) to stay awake as long as I could to get as much work as I could done. I eventually had to get into bed, and I did sleep for two hours. I knew that I was making a choice and that I would likely lose the weekend as a result of that choice, but I felt that it was worth it. As a result, we not only had the supplement (we make a book of the students work, abd then create a final "supplement" that has fun memories and a few more pieces by them held together with only a staple) ready, but we also had the 3 CD-ROMs (photos that I took, the book and supplement files, etc) burned, and I love the poem that I wrote for the class (that is not always the case). I also managed to be present for our students and truly enjoyed the final day of MITY this year.

Typically, I am a wreck for the final two to three days. I worry that we won't get the book together, then I worry about the reading, and then I obsess about what I have done and what I have not done for the last day. This year, we were ahead of the curve each step of the way. We dropped the book off earlier than we ever have, although I am still waiting to get it turned in on a Wednesday rather than a Thursday. The reading came together beautifully, and I know our final day was as good as it can get - the day will always be bittersweet because we all have to say good-bye. Perhaps, the final element that made this "closure" so complete for me is that my co-teacher and I had the room cleaned, the computers returned, and our keys turned in before 4:30 PM. Much of that had to do with the assistance that we recieved from our students, but it was breath-taking nonetheless.

I also think I am pleased with the way that MITY went this year because I see it as one more sign of the strides I am making in handling my narcolepsy. Of course I was tired and pushed too hard at times. I need to get a better grasp of what I can and cannot expect of myself during the middle weekend of MITY. I also need to remember that the transition from "regular" school to MITY will always be bumpy because it is a shift in my daily schedule - and my body does not "do" that well. But, I am clearly starting to let go of the things that I cannot control. I am allowing myself to release - over editing, over "undone" work, over insane expectations. The journey is long, but each day is another step. Which raises my final point of pride. It was at MITY a few years ago that I first began to recognize honestly my inability to live in the moment. Although I certainly am still four days ahead, or two years in the past, in any given moment, more and more I am grounding myself in the events unfolding before my eyes. The results could not be clearer. My days are richer, even when they are limited by my narcolepsy. I can't get everything done that I "want to," but I am accomplishing more each day than I ever did when my narcolepsy was "hidden." I regularly avoid direct self-praise, but I need to admit that even I am impressed by my improved efficiency.

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).

Whacky Wednesday

As much as I am getting used to time racing forward, I still find myself stunned when the opposite happens. Days when I feel like I live a week in a few short hours completely unnerve me. Today definitely fell into that category. At school today, we held a "founders" celebration for the two religious orders that started our school. I also felt like I was constantly on the go during the entire day, conversing with a colleague during my first prep, planning three things at once during our team session, attempting to organize ideas and thoughts during my second prep, processing racism and its impact with students throughout the day, assisting a few students during their homeroom time, reviewing the work of my independent study student during my lunch, and finally delving into more ideas and angst in our other class. Then, I went to lead my daughter's Poetry Club. I finished out the day by running a number of errands.

I honestly struggle to accept that our "founders" breakfast was THIS morning. Invariably, I was (and am) exhausted. And, the craziest part is that, even though I accomplished a vast number of things today, part of my brain truly believes that I should have done more. I have so many stray "unfinished" tasks, but it would be impossible to accomplish them. Not just in one day, but in a lifetime. I must work to accept that reality - my brain will never be "satisfied." It is simply the truth of my situation. Hopefully, my awareness, and ensuing actions, will keep the madness and anxiety at bay.

Flailing Frustration

Knowing that I have narcolepsy, I work diligently to have realistic expectations for myself. Certainly, I continue to overestimate (grossly) what I can accomplish - in a day, in a week, in a month. That said, though, I have gotten significantly better both in my estimation and in my acceptance of what I can accomplish. Nevertheless, I continue to have difficult and aggravating experiences focused on my inability to do even simple tasks.

Over the past weekend, I desperately wanted to clean our home office - finally. It has been a major goal for months. I will get close, but never quite finish the job. Even with the exhausting week that I experience at the end of April, I made some progress on Saturday. Sunday proved to be a whole other matter, though. I awoke with a tremendous headache which only got worse. I did try to continue my efforts in the office, but would find myself aimlessly drifting from one thought to another. Rather than being able to clean a small section, I struggled to form even basic thoughts.

Eventually, I found the pain subsiding. But, I was not content to clean one or two more things. Instead, I worked to restring one of our cellular shades. I quickly figured out what I needed to do, but the process itself was tedious and nerve-wracking. When I finally finished, and had (stall HAVE) the shade working, I went to see if my wife wanted to look at it. Turns out that it was 1 AM. I had completely missed my first Xyrem dose - oops. I am proud that I got the cellular blind ready for us, but I know that the price I paid for that was likely too high. I functioned decently on Monday and today, but I also know that I was not entirely comfortable with my focus. My judgment and cognition go out the window when I am overly run down. I just wish that I could be lucid when I WANT to be, but that is no longer reality.

Thus, I must continue to work on acceptance and balance. Those things will come with time. I am stunned at how well I do on most days, but that does not mean that I have to like that reality.

Wrung out, but Writing

I don't have much energy because it is late, but I have felt the need to write for days. I am stunned how often life's whirlwind can suddenly shift, leaving me writhing in the dust. Even though last week was significantly more taxing, this week has seemed completely out of my control. A week ago, our teaching team was missing one member the entire week, while our students bombarded us with questions about their research papers. My household was also missing our superstar - my amazing wife. Yet, it is this week that feels more insurmountable. I doubt I will ever truly understand that aspect of myself or narcolepsy. This condition seems to have an unending supply of twists and turns.

Regardless, I have survived another week. I have a mountain of work this weekend - correcting and cleaning being the primary tasks at hand. Still, I am proud of myself for pushing through the challenges that continually crop up along the journey. I have had two intense department meetings this week. Two provided fantastic dialogue, but the underlying issues are enormous and get at the spiritual core of teaching. I also believe that another setback has been dealt in the realm of technology. After two years, numerous discussions, a day long listening session, and a full faculty and staff survey, our Technology Committee seemed ready to make a recommendation about modifying the usage rules for iPods/MP3 players and cell phones during the school day. But, during the chair's summary of the meeting (with only 10 minutes remaining) a slew of "issues" were raised - things we have discussed ad nauseum over the past two years - that delayed the process yet again. The ultimate irony is that our committee only makes a recommendation. The administrative team will give whatever we do final approval. Hearing about this situation today once again makes me questions whether this school is the right place for me or for my daughter. I hate that, but it also means that I am taking nothing for granted.

Wild (wonderful) Week

I certainly am glad that this past week has reached its conclusion, but I am also thrilled to have lived it. While I did not "enjoy" missing my wife, having a sick daughter, teaching down one team member, enduring redundant questions, or short changing my sleep cycle, I found myself giddy at times today because I did weather the storm. Many moments of anxiety and frustration welled within me each day, but I rode them and continued on.

As I regularly remind myself, I have a lifetime of learning ahead of me to understand how to live with narcolepsy. That does not mean, though, that I must forgo recognizing an important milestone for myself. Typically, when my wife is away, I spiral down throughout the experience. This time, the trend went in reverse. The weekend in Duluth drained me, and my lowest point of the week might have come on Sunday night or Monday morning. Even though my energy level dropped all week, my spirits rose. Yesterday was the most productive day that I had all week. I also have high, but realistic goals for tomorrow.

One incident does not a pattern make, yet I do think that my mood is a strong indicator that I am moving in the right direction, at least from a mental health perspective. Invariably, I still have too much to do. I will also continue to beat myself up on a daily basis. The self-loathing has diminished greatly in the past year, and I am getting slightly better at saying "no" and at asking for help. Perhaps, I will eventually reach a point in time when I am at peace with myself. Until then, I simply need to remember that I am finite and can only do my best (as opposed to "the best").

Battling the Blues

Vacations and breaks are good and bad for me. I definitely needed to rest and relax, which this time off is allowing (at least in a small way). The problem, though, is that I continue to feel compelled to do things. When I have free time, my brain continues to race with everything that is un-done. That might sound odd, or even insane, to some, but it is the best way that I can describe what happens inside my head. When I have time to think, the tapes in my head regurgitate each task that I have yet to accomplish. Often, the resulting effect is stressed out paralysis - which does little to relieve the overwhelming anxiety. Needless to say, I know that these irrational thoughts are one of the largest burdens that I will face as my life moves forward.

A portion of this self-defeating trait must be genetic because I know that my mother, my grandmother, my aunt, and my great-grandmother all have (or had) the same types of tendencies. Clearly, it is also learned behavior. Watching all of those women in my life push themselves certainly rubbed off on me. My father also never stops moving, although I remain convinced that his behavior is also a way to cope with undiagnosed sleep issues (quite possibly narcolepsy). The third element, though, is me. I do know ways to cope with these messages, but I tend to let them drift to the wayside as I get busier (and more tired) during the school year. The best way for me to cope with this proclivity for irrational delusions about my work load is yoga and meditation. Closing following those two techniques is exercise. When I am stronger and more balanced mentally, emotionally, and physically, I am better able to fend off and ride out the onslaught of "missed opportunities" that can crash over me when I try to have down time.

Unfortunately, I do let yoga and exercise disappear when I am pressed for time and energy. Both do make me stronger and improve my endurance, but they require time and physical strength too. Rarely do I prioritize my need for them over my wife and daughter, or my job. In this on-going journey of narcolepsy, I need to press my personal agenda. If I do not, it will hurt me, my family, my colleagues, and my students. The reality is that things that make me more complete need to be at the top of my list, rather than in the "if I have time..." category. The truth is that I will NEVER have time for that category.

I find it ironic that even now I am writing this blog post to keep the negative messages at bay. Already this morning I have conceived of more work to do than I could hope to finish in a week. But, because I am run down and still recovering, the messages flood my brain - clean the fish tank, clean the kitchen, clean the office, sort the mail, organize the pictures, re-organize the computer files, get the books moved at school, write up the MLA formatting rules, vacuum the house, change the cat litter, do the laundry, pack for the trip, get the money entered, finish the taxes, and those are just the things that I need to do "today." Typing that list scares me because part of me truly believes that I should do ALL of that today. Then, another voice reminds me that I can't do it because of my narcolepsy and because I am weak. I know that all of that is irrational, but when I am this tired, I struggle to fully accept the irrationality of those ideas. Thus, they feed my depression and anxiety further.

In the end, I simply must embrace this portion of my journey. Playing ultimate (and my long walk on Monday) reminded me that exercise does help me. Slowly, I will find a way to work yoga and exercise back into my routine. Poco a poco, I will make the changes that I can, both to live a more balanced life and to recognize that I can be a person with narcolepsy and still have joy and contentment. Likely, the path will extend to the end of my time, but at least I know I am moving in the proper direction, even if it is one slow, small step at a time.

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.

Sunny Saturday

While my body is exhausted, I have had a wonderful day. Today was day two of the annual WAFC Fools Fest. We still have not won any games, but we staged a remarkable comeback in our final game. We were down 8 to 1 at the end of the first half, but only lost the game 14 to 10. I even played a couple of key points in the game. We also had a glorious time just being together.

One of the things I love most about ultimate is that so many excellent people play the game. One of our pick-ups is an incredible player and person who goes by School. He plays regularly with some of our Drew Alums, but he fits the team perfectly. While I connected with him yesterday, I had a stellar conversation with him today. It is moments like that which I will miss the most, talking to a quality person while also have a grand time chasing plastic.

The good thing is that I can still play ultimate periodically. Perhaps a pick up game here and there coupled with a few more Fools Fests will tide me over. At the same time, I know that coming to this tournament only underscores why I can't continue to play club ultimate. My narcolepsy does not directly impact me on the field, but the lack of exercise time is a secondary factor. Without the chance to work regular exercise into my limited schedule, I know that my body can take no more than the handful of points that I am playing. That said, I am likely even trying to do too much as it is. In our first game, I played two points in the first half. During the second one, the disc turned over many times. By the end of the point, I struggled to walk off the field. It took me about an hour to recover from that one point. Talk about humbling!

Still, I know that I did the best I could today. I also know that some of my sideline cheering helped others to play with more fire and energy. I do hope that I can find a modest exercise routine, but I also know that the process of establishing it will come with time. Narcolepsy can be so frustrating, but it continues to help me to appreciate patience and grace on a daily basis.

Surreal Saturday/Sunday

Surreal is literally the best word that I can conceive to describe the bizarre reality of the past weekend. I arose on Monday morning feeling like it had been 2 weeks since I had been to school, yet it had only been two days. The entire weekend was a constant series of frenzy and activity. My wife and I went on a lovely date on Friday night, after I spent a few hours doing work at school. We also got the oil changed in one of our cars. Then, Saturday included an oil change for the other car, tons of school planning and work, a family dinner, church, and laundry. Finally, Sunday was my daughter's prelims for swimming (she was incredible), a fun lunch with friends, more school work, and house cleaning.

Somehow, I survived it all. I felt spent by Monday morning, but I also knew that I could survive. And, I did. I need to keep striving for balance in my life, but I also realize that the ebb and flow of the universe will not always make balance possible. As a result, I need to embrace times like this weekend, while knowing that I did my best. Sometimes, like this weekend, most things will work out. Other times, nearly everything will fall a part. Regardless, I need to push forward. Perfection is an impossible ideal, and I hope that I will one day be able to say that (or write it) feeling it in my core. I take small steps each day, but the journey will span my life.

Sleepy Savings

Somehow it is already March 10th. Time seems to spin wildly out of control, particularly when my life gets stressful. Fortunately, I survived the end of yet another trimester. I also thoroughly enjoyed Suddenly Sleepy Saturday. The movie Wide Awake was decent, particularly when one remembers that it was made for Lifetime Network. The main character is a PWN and a narcolepsy researcher. She is swept up in a thriller when someone sabotages the labs research. Much better than the film was spending time socially with other PWNs.

Interestingly enough, though, I feel like I am the one who needed a stronger reminder about the impending time shirt with the arrival of Daylight Savings Time. I had a tough time going to sleep on Saturday night. Sunday morning and evening were even worse. As a person with narcolepsy, I try to have a firmly established sleep routine. The shift of even an hour can radically alter that process. I still did not feel right today. I honestly think that I should start with my new sleep pattern the week before Daylight Savings Time. In fact I am likely going to do that for both the end of Daylight Savings Time and for next year's Sleep Awareness Week.

What shocks me in this realization is how dependent my schedule, and my life, is on routine. I have always known that I function better with structure, at least until my obsessive tendencies cause me to implode. But, the bottom line is that a set routine and pattern IS the best way to cope with my narcolepsy. I still need to be flexible enough to accept the waxing and waning of energy, but I know I need to find some semblance of structure in my standard day. That seems far-fetched given the chaotic nature of our household, but it is definitely an important goal that I must pursue.