Many Main Man Moves

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

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!

Missing Month

Somehow, I managed to write nothing in my blog for over a month. While the vacation did require some post-trip recovery, a number of other things contributed to my disappearance. First and foremost, the lovely world of Wii sucked me into it. My daughter's purchase of Animal Crossing has definitely been a curse and a blessing. I love the game and have been quite successful, but WOW does it suck up time. Beyond that, I have been attempting to get back into some type of rhythm because I have already experienced two weeks of teaching. Certainly, doing my best to prep for the start of school also ate up time. Our strategic planning process was fascinating this summer, but taxed me beyond belief. More than anything, I have had a difficult time maintaining a consistent level of energy. On that note, I must get into bed. I actually had three nights in a row at the end of last week when I took only one dose of Xyrem. Such situations will not get me back into a regular routine anytime soon.

Before I go, though, I need to acknowledge to things. One, I have had a difficult and trying weekend due to moronic decisions made by the board of Narcolepsy Network. I will be attending their national conference in October, but sadly my relationship with them is likely ending. I have no doubt that I will blog about that soon. More importantly, I made a new friend on Facebook today. She actually knew me from Narcolepsy Network's forums, but we had never exchanged direct messages before. She shared some wonderful compliments with me, particularly that my blog had helped her when she was initially diagnosed. Although I had been working up the energy to get back to my writing, that interaction spurred me to post this. I love how PWNs can do so much for each other in such simple ways.

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.

Many MOONS Memories

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

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

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

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

Stunning Start

One year ago, I found myself struggling and lost in my handling of my narcolepsy. While I had clearly identified that I needed to make some changes at my job, I had yet to connect in a meaningful way with any other people with narcolepsy. I knew that living with this condition was difficult, but had no context for my situation. Was it normal to still feel this run down? How much did my doctor honestly know? Where any of my other "health problems" connected to my narcolepsy? The list of these questions was endless, but where could I even start to get answers. Worst of all, I knew I needed to process my own feelings and frustrations, but I felt like burdening my wife would be wholly unfair. She is my partner, lover, and best friend, but she could not be the sole repository of my stress and anxiety. I also had my Men's Group, but was finding it harder and harder to discuss my struggles, because narcolepsy sounds ridiculous when you explain it - I am tired during the day, and I don't sleep well at night. It invites the suggestions of getting more sleep, and the sympathetic replies of "I am tired too." Then, in a whirlwind week, everything changed.

First and foremost, I "discovered" Facebook and MySpace. It may sound insane for a forty-year-old to claim that social networking saved his life, but I am living proof. Since my daughter's school was moving to one-to-one computing in the middle school (each student has her or his own computer) and because of my own interest in using technology in the classroom, I thought I should start understanding what social networks truly were. I played with my profiles for a few days, but then I wondered if other PWNs could be found in either one. Turns out, I found support groups in both locations. The Facebook group Narcolepsy Support Group became my home away from home. I think there were around 400 members when I joined. As of today, the group is a single person away from 1000 members. Touching base with other PWNs had a huge impact.

In fact, the great irony is that the member who literally joined next on Facebook was a former student at my school. I could not believe it. I sent her a message on Facebook, feeling horribly awkward. But, within hours, we were trading emails since she too had narcolepsy, as did other family members. She has subsequently become a major factor in helping to lead the local MOONS-MN support group. So, Facebook not only put me in contact with other PWNs, but also provided me with my first face-to-face interaction with other PWNs.

The best was yet to come, though. The same motives that drew me to Facebook also had me curious about blogging. Since I was planning to use it in my classroom, I thought I might start a blog. After looking for other blogs about narcolepsy, I realized that only a handful of PWNs were sharing their stories. But, it was also clear that writing about it was helping the PWN authors and their readers. Thus, Narcoleptic Knights was born - one year ago today. I love that this one year anniversary has fallen during my break week at school. I have been privileged to blog every day over this hiatus. It has reminded me how important it is for me to write about my condition. Whether I am up or down, I need this release.

I know that some of my depression and stress over the last few months has been the limited blogging that I have done. Seeing that string of months with only two or three posts per months saddens me. I know that I was doing other things that needed to be done, but it reminds me of how far I must go to find more equilibrium in my life. It also blows my mind that I could go 3-4 months writing only a handful of posts and still average a post every three days for the year. I do remind my students regularly that I am overly verbose.

The final piece that makes this blog so important to me is that so many people have come here to read it. In one year, Narcoleptic Knights has had 891 unique visitors from 33 different countries and at least 47 regions/states within the U.S. There have been over 3300 total visits and still about a quarter of the visits come from new visitors. I am awed and honored that people from around the globe would spend even a few seconds looking at what I have said here. I do hope that I have helped some of them. At the same time, I want you all to know that you have helped me (and continue to help me). By visiting this site, you motivate me to continue writing. I have mentioned it here before, but I have never been good at keeping a journal. I always start strong, but rarely do I even make it a month when I try to regularly record my thoughts. But, because of the visitors to this blog, I have not only reached the one year mark, but also I am heading into the second year of Narcoleptic Knights with more fervor than ever. Whether you have left many comments, one comment, or simply read a portion of a post, please know that I am eternally grateful. I often avoid injecting my religious faith into this space, but it is not lost on me that today is Easter (at least it is for Roman Catholics and Protestants). The fact that we are honoring Christ re-born on the day that my blog reaches it one year mark (and it is a huge piece of my re-birth) is a gloriously wonderful thing. Thank you all for being a part of my life.

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.

Blogging Block

Somehow, another month has nearly passed me by. I am hoping to write a post or two before February also ends. I know that I need to do this, but my daily existence seems to have other plans. We will see what the next three days bring. While February generally stinks, this year seems to be spectacularly chaotic. The good news is that I continue to give myself permission to "underachieve." Unfortunately, that grows more difficult with each passing day. Our trimester ends next Friday, and the few days off will help me, but I daily find it tougher to shut down the negative voices in my head. I am well aware that I am doing the best I can, yet my constantly ebbing energy hampers me from opening myself to forgiveness.

I also find it ridiculous that I have two posts for the second month in a row. Even worse, both February posts were written WELL after my bedtime. I need to sleep, but also wanted to get something else posted before March. I need to get back into some level of routine. Perhaps, March will enter like a lamb for me. Still, I don't plan to hold my breath.

February Funk Follows January Junk

It is WAY past my bedtime. Somehow, though, I am still awake. For the third night in a row, I am up past midnight. Not good. I am out of sorts and definitely "off." I am heading to bed in a moment, but I wanted to post. Stunningly, January was my worst month ever, in terms of blogging. Fortunately, the rest of my life progressed far better than my pressence here would indicate. I continue to work to reclaim my pre-break balance. I doubt I will ever fully understand how two weeks of vacation can disrupt my routine so thoroughly. That said, I remain grateful for the vacation.

I believe that I am reacquitring some semblence of order and focus. At my acupuncture appointment today, I commented that I have often felt in the past two weeks that the world seems to move at Mach 2 or 3. But, I seem to be confinded to slow motion. While the world rushes past, I find myself marvelling at the insanity of life. Alright, I must sleep NOW. I shall return (far sooner than the month that lapsed between my last post and this one).

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.

Grace and Gratitude

While I love turkey (although the tryptophan only makes my narcolepsy more fun) and my sister makes incredible desserts, I have realized over the last few years that the best thing about Thanksgiving is the opportunity to step back and honestly ponder the many gifts in my life. While narcolepsy (and chronic sinusitis and anxiety and irritable bowel syndrome) makes every day difficult, the reality is that I am daily deluged with gifts.

The greatest gift (other than life itself) is my beautiful wife. She makes each day sing. Whether we are snuggled tightly in our bed, or crossly vying with each other over the best way to do something, she makes each moment better. Her smile ignites my heart, and her body and intellect does the same in other places. Best of all, she truly is my dearest friend. I trust no one, perhaps not even myself, to the level that I do with her. She is cute and sexy and weird and hilarious and endearing and brilliant and annoying and driven and relaxed and glorious - usually at the same moment. While we clash on a daily basis, I am overjoyed that I continue to grow in my abilities to hear her side, disagree appropriately, eventually find resolution with her, and love her passionately throughout the ordeal. Better still, though, are the moments when we look at each other and know that everything is right. Those instances are fleeting, but their magic can last for days.

A close second is my daughter. As she enters her teenage years, I worry a great deal about who she might become, but I also know that I can't control that. What I do know is that if she becomes even a fraction of the person she is today, I will be related to one of the most amazing people in the world. Daily, my daughter stuns me with the enthusiasm and brilliance and creativity and energy and compassion and sense of justice. While I often struggle to appreciate the whirlwind of her, I know that my love continues to grow by leaps and bounds. She is a remarkable young woman. She will become who she is meant to be; I am simply glad to have a chance to tag along for the ride.

Reflecting on those two gifts alone would be enough to know that my life is good, but my bounty seems to overflow. I almost want to feel guilty because there is so much that is good in my life. Fortunately, I am learning to accept what is freely given and to do so without regret. Whether it is the incredible friendship and love of my sister and her husband (particularly when she cooks up another amazing Thanksgiving feast), or the kindest and offbeat humor of my mother-in-law and father-in-law (who are kind enough to still come to visit, even in the midst of their grieving), I shower in love on a daily basis.

I am filled with awe and wonder by all of the following and more - my friend and colleagues and students at school, the stunningly wonderful folks of MOONS, the magnanimous moderators and members and organizers of Narcolepsy Network and its forums, the devoted and earnest members of my men's group, the talented geniuses that I "teach" at MITY, the global and astute contributors to the narcolepsy support groups on Facebook and MySpace, my compassionate and fiery friends on tba and in the ultimate community as a whole, the gifted educators and friends and parents who interact with my daughter every day, my blessed medical providers - those of traditional Western medicine and those of the more Eastern mindsets.

No doubt, my life is difficult. This chronic condition makes each day a struggle, but I am fortunate. Not only do I have all of these wonderful people in my world, but I am also able to find fulfillment doing what I love. People pay me to talk to teenagers. I am even able to do it part-time. I would never wish my life on another, but I also would never trade it. I can see God's grace in everything around me.

Before I end this, I need to recognize a few other gifts that are vitally important to me. Clearly, my parents and extended family are integral to who I have become and continue to become. I have often railed against my parents, but I know I am fortunate because their love for me has given me a deeper inner strength that has allowed me to start walking this path to more balance. Also, I must own that God has given all of this to me. I would be nothing without God's love. I generally try to avoid injecting my faith into these posts because I don't want to preach, but my faith is a tremendous source of comfort for me. In the same vein, I must acknowledge that random chance has hand in letting me get this far. While being born into the United States is not a guarantee of success, it certainly helps many people. And, when one is lucky enough to be male and white and heterosexual, the odds shift even more clearly into your favor. Yes, my own energy has gone into everything that I have done in this world, but I live in a system that has been pre-weighted to favor my sex and my skin color and my sexual preference. I don't see those gifts in the same way that I see so many of the others listed here, but I know that I needed to name them. Invariably, I must offer thanks for the gift of those who read this blog. So often, I tell my students, "don't mention the paper in the paper," but this situation is different. I have never been able to journal before, but I have continued to use this blog for MONTHS - regularly (well, a hiatus has happened here and there when life has overwhelmed me). That too is a gift. The difference is that I know others are reading this too. While this writing is for me, I also feel that I owe all of you. Some of you are kind enough to check out a post or two; others read it regularly. A few of you are even crazy enough to leave comments. Regardless of who you are and how often you are here, no words can express my gratitude for your time and attention. It has definitely helped to save my life. Thank you for being a part of my many blessings. And, last (and maybe also least), I must offer thanks for my narcolepsy. While it is ridiculous and rotten, this condition has allowed me to learn more about who I am and what I truly value than anything else in my life.

Better Before Beginning

I have arrived! The morning was insane because I didn't pack last night. I tested both my wife's and my daughter's patience. Somehow, I only forgot two things, and my wife was kind enough to go home for them before she drove into work. My in-service at work was good, but it wouldn't end! My wife called my cell twice before calling the school to have someone come get me. I had to walk past my boss as he was starting an announcement because I knew that I needed to get going. While my wife was more than a little irritated, I didn't completely goof up her day. My flight was fine and ridiculously fast. I am far more conscious of the "speed" of air travel after this flight. I have driven to Milwaukee many times. It is nearly impossible to get here in less than 6 hours without grossly violating the speed limit. We landed less than 45 minutes after we took off. That is wild!

I rode to the hotel on its shuttle. There were three airline employees in the van, two other people and me. I think the woman in the van is one of the people I have "talked" to a few times on the Narcolepsy Network forums. The man is one of our presenters. After checking in, I unpacked in my room then figured I would go hang out in the lobby to see if I would fine anyone I know. I checked in for the conference and sat down to check email and blog. Soon, people were arriving in droves. The energy and enthusiasm electrified the air with each passing moment. It is clear that attendees to this conference genuinely care for one another. I could feel my own excitement growing and I didn't know anyone.

Soon, I was approached by another attendee. He and I chatted for quite a while. This is his third conference. As a 63 year old PWN, he has lived much of his life with this disease, but for the last ten years he has given up Western medical treatments. He doesn't like pills. I think that is incredible. We discussed acupuncture, chiropractic and dietary issues. It was amazing. Truly, that one conversation would make this trip worthwhile, yet the conference hasn't even started yet! I knew this thing would be better than I imagined, but even knowing that I am still stunned.

I can't wait for my Minnesota friends to arrive, but I am also excited to meet some of the folks with whom I have interacted online. As the nice gentleman and I were talking, another PWN started giving him a hard time. Turns out this second PWN and I have traded messages in the Facebook group. He immediately mentioned another person from the Facebook group and said, "we were just talking about you." This is incredible. And, as I was typing this, the Minnesota car arrived! Hooray!

I know this weekend will blow my mind. It already is. This might be the first time I am honestly excited about having narcolepsy. Having it means I have a connection with these wonderfully cool people. MUCH more to follow.

Late Lounging

Somehow I am still awake. My "plan" is to be in bed at 10 PM, but for the umpteenth night in a row, it is nearly 11 PM and I am still doing things. The good side is that I am connecting with my wife and daughter, corresponding with my friends (particularly my sleepy PWN friends), blogging on a more frequent basis, AND getting some school work done. The bad? Well, I am not sleeping - which would qualify as VERY bad. I also know that part of the reason that I have been "off" is that I am not even getting the mediocre sleep that I usually get. I am pushing too hard, but I don't know if I am okay with doing "less" than I am right now.

I want to pull my fair share of the work in my classroom. I think I am doing that, but I am still behind in my correcting. The craziest part is that I am not nearly as far behind as I usually am at this point in the school year. I think that is a good sign, but I am also scared. If I can't get "caught up" when I am doing the best job that I have done in years, what does that mean? The situation forces me to wonder and worry about how viable this career path is. I LOVE teaching, and I know that I would be miserable without it. At the same time, I can't correct in the way that my peers can. Sitting and reading papers makes me more tired (see I have narcolepsy). I also know that teaching even part-time wipes me out for at least a few hours when I get home. Then, I also feel the pull to be with my wife and daughter.

Thus, I started correcting "for real" around 9 PM tonight. I did get through a few papers, but I was also exhausted. Thus, I moved, thought and responded slowly to my students' work. I also am not nearly as good at "shutting out" the hyper-correcting voices. Those would be the impulses to correct EVERY minuscule error that I find. As a result, it can take me 20 minutes to go over three paragraphs. I am not exactly efficient. Still, I am heartened by the fact that even in the face of futility, I am still trying to do some work.

I am heading to bed now, but needed to write this. I find myself in such strange and reflective places these days. I know I need to get through student papers more rapidly. And, while I can occasionally do that, I find that I am more at peace with my slow pace. I don't know if this acceptance of my "reality" is good or bad, but I do know that it just is. Daily, I find myself more at peace with the notion that I have done the best I could on that particular day. While that might eventually lead to my team members stringing me up (or my boss tossing me out on my ear), I firmly believe that I am on the proper path in my journey. Who knows, I might even come to enjoy this constant, mind-numbing fatigue... Yeah, probably not - but, a boy can dream can't he?

Focus Frustration

I certainly understand that my narcolepsy ebbs and flows. Good days come and go. Bad days arrive and depart. Unfortunately, my current string of bad days seems to be settling in for the long haul. I go through spells when I struggle to find any level of focus. The last two weeks are a prime example. I can get through my days and even do some small tasks, but bringing my mental energy to bear on the things that I need to do proves to be nearly impossible. I work hard not to beat myself up when this happens, but I am approaching the end of my limits. Of course, getting angry and upset with myself will only cause me to spiral lower, so I need to find a way to pull out of this.

The largest concern is that I am not providing any assistance to my wife. I have done a little laundry and washed a few loads of dishes, but most days I have come home from work (or some other activity) and collapsed. Today, I got up early to meet with teaching team. We did get some planning done, but I don't even feel like I contributed much there. When I got home, I did a little work, but felt dizzy the entire time. I have been sitting on my butt since Noon. I can barely even focus on doing things I enjoy, like corresponding with other people with narcolepsy or writing this blog entry.

Almost as upsetting as letting down my wife is the growing pile of school work that I MUST get corrected soon. I know that I can only do so much, but for the last week, I have done literally nothing. My plan when I finish this blog is to stretch and then start on some of my school work. But, I have little to no faith that I will get through much. I hope that I am wrong, but my brain simply will not click into gear. Moments like this are some of the hardest for me. I still find it hard to believe MYSELF when I realize that I can't get work done. The words to describe it sound ridiculous - "my brain won't work." That sounds insane. And, if I struggle to believe it, how is the rest of the world supposed to react? It is no wonder that many people believe that people with narcolepsy are just horrible lazy. I know that is not the case, but hate that I partial feel that way myself. Seriously, my brain just can't hold a thought! - Who says things like that?

As frustrating as this is, it does help to write about it. I don't know if it will change things, but it makes me feel better. I also know that I need to sit for a time and breathe. Relaxing will make it easier to start. I will do what I can, and then I will go to my men's group. That will also help. I just wish this particular down time would not be lasting more than a fortnight!

Sailing through September

How in the world is it September 16th? Seriously! This month has BLOWN past me. I had hoped to write at least one blog entry last week. Then, as the weekend approached, I was sure that I would get caught up then. Suddenly, it is Tuesday night, and I have not written anything for nearly a week and a half. No wonder my head feels like it might explode. Unwritten blog pieces are screaming to get out. The scariest part is that I couldn't have written last week even if someone would have offered to pay me for it. I can't believe how busy I have been.

Somehow, little old narcoleptic me has managed to put in full days for over a week now. Starting on Monday, September 8th, I worked (or managed) 12 hour days (or more) for this entire period. Two of the days have been school work and then getting my daughter home and to volleyball practice. Two other days were school and going to my daughter's school for the distribution of computers for the new one-to-one program (yes, I am ridiculously excited about it). Another day involved a full day of teaching and helping at a football game. Even Saturday and Sunday were crazy with neighborhood clean up activities, curriculum planning, house and garage cleaning, church and my men's group. But, the two nuttiest days were last Tuesday, September 9th, and yesterday.

September 9th was already shaping up to be a crazy day. I had a full day of teaching, an acupuncture appointment, a chiropractic appointment and the first of three computer distribution days. The heightened stress came in when I realized that my car had died in the parking lot of Langford Chiropractic. My wife eventually arrived, and we jumped my car. I also knew that I would not be at the computer distribution. I figured my night would then get easier, but I was wrong. On the trip home, my radio and speedometer would die every time I turned on my headlights. Even more unnerving was the radio fading out periodically and then fading back in. Thus, I didn't even turn off the car when we got home. We simply headed straight to our mechanic. After dropping off the car, I desperately wanted to go get some food, but my wife needed to get home to our daughter. Thus, I felt rejected and let the wheels start to come off my wagon for the night. Somehow, I managed to avoid a huge fight with my wife - which was a good decision. We even had a chance to process the situation the next morning. She actually thought everything was "fine" from the night before. The best part, though, is that I did get to tell her what was upsetting me, but in a way and at a time that put neither of us in a bad place. As crazy as that day felt, though, it had nothing on yesterday.

My wife and I have decided that I am driving our daughter to school on Monday's. My wife teaches an early class, and I like helping in the morning once a week to offset the times when my wife needs to pick up our daughter. Because of this early trip on Mondays, I get to school before it starts. Ordinarily, that is great because I can get some work done (since I am always behind). Unfortunately, I was horribly behind yesterday (and still am). Yet, when I got to school, I knew I had almost nothing to give in terms of correcting. I did manage to get some other work done, though. I was active all day. My wife picked up our daughter to get her to a volleyball match, and I stayed at school to get my lesson planning finished for today. I worked constantly for three hours. When I finished, it ws time for "Back-to-School" night. That meant that I got to put on the teacher show for the parents of my students. Granted, we had an excellent time, but when I arrived home at 9:15 PM, I had been working for 14 hours. That is not the wisest thing that a narcoleptic can do.

The strange thing, though, is that I am surviving. I know that I can't keep this pace up, but I don't think that I will need to do that. The past two weeks have had a number of one time only activities. I still believe that I can get into a decent routine. More importantly, I know that I HAVE to get into a routine if I want to be a decent teacher, a great dad and an awesome husband. Having said that, though, I am proud of myself for working hard and for protecting time for me - even on the busiest days of the past week and a half. I am still horribly sleepy, but I am weathering it well.

Finally Accepting My Own Advice

For years I have encourage students to write when they are upset, or anxious, or depressed, or angry. I have harped on the therapeutic values of writing and promoted the value of writing daily - both for academic improvement and mental relief. In the midst of all of that, I often felt like the biggest hypocrite ever to lead a class. While my charges often found my suggestion fulfilling, I never found a way to practice what I preached. Certainly, I attempted to journal at times. I also have a decent collection of writing with which I tinkered sporadically. But, writing on a consistent and frequent basis managed to elude me - until now.

This blog has become a vital component of my sanity. I knew that even before this past week, but my lack of output over the last seven days has been unbearable. While I realize that my bubbling animosity has a multitude of causes, a portion of it definitely grew out of my unfulfilled need to express myself. Unpacking my anxieties has become a vital piece of my routine. I am also amused that my need to be "more selfish" has finally resulted in at least one tangible (and definable) activity. I do plan to discover more elements of my life that are specifically mine, but it is incredible to realize that I need to post here simply to be at peace with myself.

Yes, I worried all week about what my "regular readers" might think if I didn't post soon, but even more powerfully, I knew that I needed to write about my week simply to stay sane. What strikes me as most humorous about this realization is my own attitude about technology. If anyone had told me three months ago that blogging would become as important in my life as finding a correct diagnosis or feeling supported by my men's group, I would have laughed in your face. While I have often actively supported the use of technology in the classroom, I have never fully understood the impact that computers can have on an individual's life. Part of my ability to "cope" with narcolepsy is directly linked to computing. I have NEVER been able to journal, now suddenly it is a core piece of me. Why? Now, I know that people are reading it. I want to help others by putting my thoughts out on the web, but the primary purpose of this writing is for me. For the first time in my life, I am selfish in a way that it vital and necessary. I needed to know that others would read it. My vanity LOVES that my words matter. Even better, some people actually leave comments. My words have touched others. Again, a portion of the thrill is helping someone, but another is that I matter.

Blogging is therapy for me. It is the very thing that I have driven home in writing classes for years, but could never accomplish for myself. Best of all, I know that I would continue to do it now, even if every one of the amazing people who visit my blog disappeared. I need this. If nothing else, like my good friend from La Mancha, it is here that I tilt with windmills. Nothing (short of a major medical miracle) will ever remove narcolepsy from my life. This Erewhon (spell it backwards if you are unfamiliar with the word or Butler's book - you do need to flip the w and the h) of the Internet provides me the place that I can be free of its grasp. I can rage against it and embrace it. I can cry and laugh and fall and rise. Quixotically, I can be the knight I have always seen in my mind's eye, doing battle with the dragon (or Darth) that vexes me to no end. I need this outlet and claim it as my own!

A wonderful post script in my crazy narcoleptic world - although this posting is also dated for Sunday, June 8, I did not finish it until June 9. I fought my Xyrem for at least a half hour, once again attempting to do too much (balance may yet find me), but eventually succumbed to sleep. I wrote the final paragraph and a half of the penultimate paragraph on Monday. That said, I love that it happened that way because I know I never would have hit on those final thoughts as my body was shutting down. Blessing and curse - narcolepsy!