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.

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.

Merry Madness

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

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

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

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

December Delight

Somehow, I have managed to not post for 16 days! That is crazy. I definitely felt it in some ways, but in others, I was at peace just getting through the daily grind. I have enjoyed the last few weeks for a number of reasons, but first and foremost, I honestly feel like I balanced things well.

For years now, I have been trying to achieve some middle ground between overcommitment at work and the demands of being a husband and parent. Narcolepsy has obviously compounded the issue greatly, but in the past three weeks, I not only felt that I balanced things well, but also I felt good about what I was doing. That latter item is huge for me. Previously, when I have done a decent job of contributing at work and at home, I have never been able to recognize it in my gut. While logically I knew I had done the right thing, my emotions and psyche were often a wreck, focusing only on what I had left undone.

This time, the complete opposite is true. I know that I did not get to everything I might have liked, and I have plenty of work to do over my holiday break. But, I feel nothing but pride for the things that I did at home and at school during this time. Heightening that sense of fulfillment is the reality that physically I have been a mess in December - bad sinuses, extreme fatigue, rotten bowels. All of those are things that individually have derailed me for entire months. Somehow, I accepted all three, and did good work, and stayed on an even keel, and allowed myself to recognize all of that. I think that is a good sign.

Narcolepsy is insidious in its relentless presence, but I am finding more and more that by knowing my base line with it, I can negotiate ways to be effective in my job and in my home. I won't ever get to everything that my brain says I am supposed to do, but I also know that my brain is completely irrational when it comes to things like that. Even without narcolepsy, no one would be able to do what my brain (or my super ego as my colleague would say) thinks is achievable. Recognizing and internalizing that reality is a huge step for me.

I have much to learn about myself still, but this December has brought me tremendous insight. Beyond all of these successes is the fact that I managed to do small batches of work during many nights this past month. I need to make such practices more habitual, but it is a grand start. I am finally on break now, and while I want to rest and unwind, I also want to continue building my abilities to fragment my work into small pieces. Yet, I am affording myself the opportunity to do that later in the break. Right now, I am placing my health above everything.

I have known since October that I need to take a medication holiday from my amphetamine. That ways impossible until now; my wife and I could not afford to have me out of commission. Fortunately, I can take a break now. Yesterday was not bad, but today is definitely a struggle. Certainly, one element of this is withdrawal. It is also the narcolepsy. Nonetheless, I am doing a decent job of fighting the urge to berate myself for being inefficient for these five days. Again, who could be productive when your body is in the throes of withdrawal. The fact that I am both staying upbeat and getting one or two things done is miraculous. Hopefully, this break is good for my body and will help the amphetamine be a bit more effective when I restart it.

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.

Simple Successes

I often am amused by my need for completion. As much as a piece of me hungers to never reach conclusions, another piece lives to "get things done." I actually hate housework because no matter how often or how well you clean, or scrub, or sweep, or work, things always wind up dirty, or messy, or cluttered, or undone, once again. It is the insanity of home ownership, the madness of chores. As a result, I tend to love mundane tasks, like folding laundry or organizing specific items.

This trait is on my mind because we are putting our CDs into large cases. For years we have had our hundreds of CDs in various racks. We have tried to keep them in different locations, but they always seem to be in the way. My wife got two 336 disc cases last weekend, and I have been putting the CDs into those cases. I needed to get two more today, but am making tremendous progress. While that is good in some ways, I also know that I am obsessing about it. I NEED to finish because I also hate when simple projects like this are undone. Something about the "closure" of completing a task like this gives me fulfillment - at least for a day or two. Of course, the obsessiveness can undermine any benefits.

Tonight, I had hoped to find the two additional cases at a local electronics store. It is where my wife got the first two. Unfortunately, the store did not have more. I then checked two other stores to no avail and found my angst rising constantly. I know that part of my believes that the entire Thanksgiving break would be a lost if I did not find these cases, because I HAD to finish organizing the CDs. That is crazy, and I know it. Yet, I still felt the same way. Fortunately, a relatively new store at a local mall did have two more cases. I experienced ridiculous relief when I discovered them.

I am glad that simple tasks can ground me, but I also know that I need to keep working on long term tasks like the CDs being "unfinished" for a time. Getting obsessive about uncompleted tasks definitely saps my strength. Even worse, I can lose sight of other responsibilities when I am swept up in irrational devotion to a massive, but clear cut, activity. I can't organize CDs at the expense of correcting the papers from mid-October that I still have not finished. Those written pieces need grades by Monday. It is not an option. But, I honestly could forget them because I desperately want to complete the CDs. It is crazy, literally.

Balance remains my goal. I know it will take years for me to even approach a moderate level of living in the middle of things. My brain is so conditioned for black and white, all or nothing - I hate it. Yet, it is who I am. By accepting that reality, I can free myself from the shame of it. I can challenge myself more openly, while still being kind to myself. Invariably, all of this comes home to roost in the nuances of my narcolepsy. Since I can't control my body, I want to find it somewhere. What I must internalize is that control is an illusion at all times. I am starting to feel it, but I worry that full comprehension is also years away.

Magic Moments

I have been away too long. I can't believe that a week has passed since my last post - yikes! I certainly have been feeling the absence. At the same time the past week has been incredible. I have gotten a ton done (technically not enough, but still) and enjoyed time with my wife, with my colleagues and with friends. My daughter is on a trip and I have missed her too. She comes home tomorrow (well, it would actually be today now) and we are excited to see her.

My life has been dominated for the past week with house items and school items. My wife and I learned a LOT about exterior doors and their measurements over the weekend. We are going to have work done on our home and needed to buy the doors so the contractor could install them. Because our current doors actually swing out (and have a door knob in the center of the door making them even weirder) the rough openings are small. In fact we thought for a while they were too small because after measuring them, we could find NO doors that "matched." It turns out that the "rough opening" on doors is an estimate. We should be fine.

I did get super stressed during the process of shopping - I tend to over react any time we are doing "house things" since (as a guy) I am supposed to handle that stuff. Of course that is crazy. Fortunately, we handled my stress well and actually purchased the doors - all of them. Hooray. All of it kept me from getting school prep done, but it is about finding balance.

School has been the all consuming aspect of the past three days. My team members and I spent much of Monday and Tuesday getting our room in order. I drilled many holes into concrete so we can hang pictures. The room actually looks great. Today, I had an all day department meeting and then another meeting at my daughter's school tonight. I also have inservices tomorrow (oops, today) and Friday. I am even TEACHING something to my colleagues tomorrow and am not ready. But, in all of this, I am holding up well. I know that I have pushed hard over the past three days, but I also feel like I am respecting my narcolepsy. I also know that I need to slow down tomorrow and Friday. If not, I will be in trouble in terms of my health. Part of what has been carrying me is my overwhelming excitement for the coming school year and the chance to work with these two amazing teachers.

The final piece of the last few days, and the most rewarding, is the chances that I have had to connect to other narcoleptics. Through Facebook, I have been dialoguing with a young potential narcoleptic half a world away. This incredible teen is facing a mountian of school work, disbelieving parents, and a lifetime of sleep issues, yet has managed to research narcolepsy and get into see a sleep specialist. I just hope things work out. Closer to home, I had the chance on Tuesday to connect with some incredible former students who also have narcolepsy. It is amazing to talk face-to-face with other narcoleptics. I know that we will continue to do that, and I have MOONS and the National Narcolepsy Network conference coming soon. While I regularly am forced to remember that I have a long road ahead of me - learning to accept and appreciate my narcolepsy, I love that it do have many places in my life for support. I even got to connect with one of my wonderful summer students before she heads off to college. We did that on Sunday - fortunately after I was much calmer about doors.

A final item before I finally hit the sack - I made an incredible observation the other day. In the coming school year, I prep with my team during period 2 and teach in periods 4, 5, 7 and 8. Periods 3 and 6 (while I will be at school) are MINE. My school is paying me to be there for one prep period and four teaching periods. As a result, I can use those other two periods for me, for yoga, for meditation, for naps (?) and certainly for correcting and work. But, the fact that I am claiming them is HUGE. I hope to work incredibly hard to protect MY time. We will see.

Lucky in Love

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

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

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

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

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

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

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

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

Blessed Beyond Belief

While I remain aggravated about my own dearth of energy, I can't help but smile because I have the best job in the world. I was made to teach, particularly in high school, and get a huge rush from the daily opportunity to watch young minds at work. As wonderful as my regular teaching can be, though, nothing compares to the experience of working in Expand Your Mind at the Minnesota Institute for Talented Youth. Daily, I get the thrill of challenging the brilliant young adults. I am awestruck by their intellect, but even more impressed by their depth of character. My co-teacher and I have 27 amazing writers whose maturity and wisdom belie their teenage years.

My joy comes not just from witnessing their efforts to tremendous pieces, but more so from their passion for each other. Nothing gives me greater hope than spending two weeks each summer with such talented individuals. Their spirits radiate enthusiasm and kindness and mirth and earnestness and compassion and humor and love. Rarely does one find such a group in a life time, and I get to spend time with them every year. The faces change, grow older, move on, but the essence stays the same. Part of that is the atmosphere that my co-teacher and I create, but much more is the result of bringing phenomenal young women and men together. For so many of our students, MITY is the one place where they honestly feel "normal" (whatever that means). Instead of standing out as "the kid with the big brain," each student can shine for his or her talents. Plus, they finally have peers - ones that get their jokes and appreciate their insights.

More than anything, though, my MITY ones help me to become a better person and teacher. Every summer I learn more about myself than I feel that I ever give them in terms of knowledge. Their words - in poetry and prose - weave wondrous images. Their emotions are poured on to each page only to spring to life within the reader's mind. Better yet are the expressive interactions that fill the classroom from the first moment to the last. These incredible individuals bond as a family. They cheer for each other, edit for each other, celebrate for each other. No tangible rewards come as a result of this support; they simply want everyone to feel welcome.

My narcolepsy frustrates me to the core. It prevents me from engaging in EVERYTHING to the extent that I want (or at least that I think I want). But, it also forces me to slow down my world. As a result I can appreciate even more these amazing people in my life. On Thursday we went to the Minneapolis Institute of Art. The class was using the art to practice critical response. They also used the art for inspiration. I certainly enjoyed looking at images, but even better was watching my MITY minds probe great works as they sketched and wrote and pondered. It is beautiful to observe - essentially living art. If my narcolepsy didn't slow me down, I likely would miss seeing those moments. Later, I simply sat down to rest, and slowly I found many of the students gathering near me. They just wanted to be together, relishing the chance to share the quiet and their discoveries.

Narcolepsy is devastating for many of us. I am lucky that I do not experience cataplexy and that my meds keep me from falling asleep during the day. But, I am also lucky because this condition does force me to reduce my pace. I struggle to accept that fact, but it is true. More and more, I know what I need to do is accept my limits. Eventually, I will get there. Until then, I will likely rail against this condition in between moments of peace. I will also embrace my good fortune that has brought me to this glorious summer program.

Irritating Incompetence

I generally consider myself a patient man. In fact, I often forgive far too easily - which eventually results in a crazy "fist punching wall" moment. Certainly, though, having narcolepsy manages to challenge my kindness in a variety of ways. My least favorite, though, is the angst and irrationality the bubbles to the surface when I am forced to deal with screw ups by my pulmonary doctor's office.

If it seems odd that the primary person and clinic responsible for treating my narcolepsy is also one of my greatest sources of frustration, then you are beginning to glimpse why such moments make me crazy. My provider's practice has a convoluted system for relaying information. When I need to get my doctor a message, I can't call his office. There is no published direct number. Instead, I call a central nurse triage line. Now, I do understand why they adhere to this policy. If I were a pulmonary doctor, I would not want every person in the world calling my office attempting to get a prescription for the various stimulants that narcoleptics take. I would even happily call the triage line if my messages were conveyed correctly even 75% of the time. But, when even simple messages get garbled, impacting my daily health, I get irate.

Interestingly enough, this past week's problem was not caused by the triage line. Of course, in my mind, that makes the screw up even worse. As a result of triage line errors, I have been forced to live without any stimulant for three weeks, had to wait days to figure out how to handle possible reactions to medications and not gotten correct prescriptions. Still, if you have ever played "telephone" (the whispering game), you can see how my phone message, written down by someone, called to someone else, and eventually conveyed to my physician might get messed up. I still struggle to see how that could happen virtually EVERY time, but I can at least glimpse it.

When the error happens in a monthly mailed prescription, however, my tolerance diminishes greatly. Even more unbelievable, though, is the fact that the two prescriptions were correct the month before. There should have been NO reason for the screw up that happened this month. I get prescriptions for my two stimulants every month. This month, the prescription for my MUCH more important drug only gave me enough for 10 days. Now, I would assume that ANY organization that had goofed up a customer's items even once or twice would go out of the way to avoid issues in the future. Given that my problems are well past four instances, and the fact that we are talking about drugs that I need to function even at a minimal level, I can't understand how anyone would let the prescriptions leave that office without triple checking them. Yet, when I got the pills, something was seriously wrong.

While their incompetence is unfathomable, I am even more upset about the near paralysis caused by my own surge of emotions. Due to my previous issues with my own doctor's office, the exhausting effects of narcolepsy, and the bizarre reality that people with conditions like mine usually have to treat navigating healthcare like a full-time job, I found this minor issue shutting me down. I was ready to explode - at someone, on someone, near someone. The rage inside me swarmed and nearly burst. Fortunately, I managed to calm myself. I even left a terse, but controlled message on the nurse triage line. The situation has subsequently resolved itself, but I hate that my mood was devastated. Even more unnerving, it was actions by the people supposedly in charge of helping me the most that set off the cascade.

I don't know if I have many options other than this particular pulmonary practice. Beyond what my health plan will cover, I actually worry that I might not find another doctor as good as mine has been. Even though my interactions with staff at many levels has been less than disappointing, the pulmonary doctor that actually treats me has been decent. When I discussed the situation with my primary doctor (and the smartest physician that I see), he pointed out that I am the ONLY narcoleptic he has encountered in 18 years of practicing. It is possible that my pulmonary doctor has only treated a few dozen narcoleptics (or less), even though it is his "job" medically speaking. I am going to try to see someone who specializes in narcolepsy, even if it is just one visit, to make sure that I am being treated in the best way possible. As for the headaches and red tape getting messages to my doctor or help in handling my situation, I will work to stay balanced. I also know that I am nearing the point of no return. One or two more mistakes will force me to sever my relationship with this pulmonary clinic, no matter how much I like (or at least can tolerate) this doctor. As patients we all must advocate for ourselves. We are still consumers and agitating is often the only way we can force change.

I desperately want to avoid another day like this past Wednesday - when all of this took place. Getting that upset completely derails me, especially when the stress comes from agencies theoretically designed to assist me. I don't want to become bitter and jaded, but more and more I can clearly understand how folks with conditions like mine lose all sense of trust in Western medicine. The way medicine is practiced in the United States does not fit well with chronic illness, particularly when that illness is not clearly understood.

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!

Sharing Saves

My wife read my wall blog. While she had a good chuckle and significant sympathy, she also asked if writing the blog helped me with the emotions. I think I said, "yes," before I actually opened my mouth. I am astounded how much blogging has helped me. I shouldn't be surprised of course. As a writer and a writing teacher, I know that my students and I always feel relief. Expression of any kind is glorious, but it gets harder to remember that when one turns the focus internally.

I also love that people are reading this. Whether anyone comments or not, here or in person, the fact that friends and strangers find something in my words lifts my confidence and coping skills. Even a day like yesterday diminishes in terms of self-deprecation when I recognize that it will make a tremendous blog post - honest and humorous. More than that, though, is the sense that I am doing a greater good. By sharing my story I hope I am helping other narcoleptics and their friends and families. Whether it allows someone to feel less insane, or lets a person see that a sibling or friend faces true struggles and is not "simply lazy," I want to believe that I am helping. And, that too raises my own strength.

I know that reading the stories of other narcoleptics on Facebook and MySpace has been an incredible boon for me. Next weekend (wow, only five days away) I finally get to attend MOONS, a Minnesota based narcolepsy group. I missed an early meeting for a friend's wedding. It was absolutely the right decision, but I am now bursting to trade stories with other folks in a face to face setting. It will be stunning!

Having said that, I am also continuing my online quest to find more narcolepsy blogs and videos. I have listed a few other blogs on mine, but haven't seen any posts on them recently. I still hope I can find a few other folks like me - essentially people who won't shut up. I would LOVE to read their stories, whatever they are. My latest find are the videos. A dear friend sent me the first one, which I finally watched last night (sorry, mistawulf). The video was made by TogetherforPeace. I even found two others - discuscatcher and sofiarune. All three videos are great, and each is drastically different. More than anything, I appreciate the ways that these videos demonstrate the diversity of this disease. Each videographer has unique story, and yet all are rooted in this wacky condition. Eventually, I will figure out how to post their links on my blog - since they are simply trying to do what I am doing - processing the illness and hoping others will understand.

Oh, if anyone is wondering, my hand is still swollen. I might ice it some today, but I do find merit in letting the pain (which is not bad) remind me of my foolishness and my need to be honest mentally, emotionally and physically.

Hypnogogic Hi-larity

I know that I have had hypnogogic situations before, but today is the first time that I know that I have had a hypnogogic dream. These dreams are intense REM experiences that feel and are experienced as real by the narcoleptic. My previous examples come from classes in college when I wrote things that were in my brain as I dozed in a lecture rather than what the professor was saying. They also come from my own classroom when I would doze (pre-medication) during student presentations. I would make written comments about the things in my head, rather than the actual items that my students were presenting.

This morning, I was waking up, but was extremely tired. Pan (our youngest cat) was gently reminding my to feed him - to no avail. I kept looking at the clock and attempting to rise, yet the bed continued to pull me back. My frustration started to build because it was getting later and later. While today is a day off from school, I definitely knew that I had to start on all of my work early. As the clock passed six and I had not arisen, my angst jumped another level. Finally, after losing the battle repeatedly, I dragged myself upright, confident that it was close to seven AM - angry by now. As I checked my wife's clock (the accurate one), it read 5:25 AM. Now, we have both had clock problems of late, so I shifted my gaze to mine - the same one I had watched switch from 5:59 AM to 6:00 AM about an hour earlier. It read 5:18 AM (it is seven to eight minutes slower than my wife's). As Pan rubbed against me, still hungry, I realized that the battle with my alarm and my fatigue was a dream - one that I completely believed, making it hypnogogic.

I find this particularly interesting because it is my first one - that I remember. Clearly, my educational experiences (as teacher and teachee) indicate that I am capable of these bizarre occurrences, but never having them in my sleep left me wondering. I RARELY remember dreams. My wife and daughter, as well as numerous friends, can vividly describe dreams that they have had. Other than a horrid dream involving a ghost and a witch that I had as a young child (we are talking 5-7 here), I can barely remember even snatches of the handful of dreams that I know that I have had. There is one with an amusement park and another with teaching. That's it. Given both my irrational anxiety level and the fact that many narcoleptic describe terror filled hypnogogic dreams part of me thinks I lucked out not remembering my dreams. But, another part of me wonders if my hypnogogic dreams, which I possible block out of my conscious mind, are a root cause of the irrational anxiety. I have no idea if that is possible or not. I do know that if my typical hypnogogic dream is anything like the nightmare I had as a child (and it is possible to block these things), I could easily see my subconscious making the decision to isolate them.

I have no idea if my theory has any grounding in reality, but it is interesting to ponder. I do know that my stress and anxiety this morning were real. I got up completely agitated that I had not been able to wake earlier. I was furious with myself, and then I came to terms with reality - it was a dream. Weird. I am excited, and more than a little frightened, to see if I have and remember any other hypnogogic dreams. I also will start doing some research to see what I can learn about not remembering dreams.

Humility and Hubris

My mood has been good for a week, which is incredible. My spirits have remained up even though my physical state has been sliding for days. I even managed to respond, "good, really good," to the question, "how are you?" The craziest part is that I meant it! I can't remember the last time such an answer came to my lips naturally. Given all of this, one would assume that I would be prepared for the shoe to drop, but I was not. Yesterday was shaky, but the walls crashed in today. I still managed to be social and friendly (except to my wife and daughter, which made the day even more wonderful given that it's Mother's Day).

More than anything, I regret not preparing myself for the inevitable slump that had to come. Somehow, the delusion that years of irritating illness would simply be resolved by "coming to terms" with my narcolepsy caused me to forget that we all experience highs and lows. Heck, I had weathered a week of fatigue; how could things get worse than that? The ancient Greeks loved to build their best dramas around that specific theme. Hubris is one of our most human characteristics, and I indulge in it voluminously. How can it get worse? Quite easily, particularly when multiple issues collide within the cauldron of chaos that is my daily life.

I went to ultimate practice on Saturday. While I have been doing my physical therapy exercises regularly, my endurance is non-existent. Strengthening one's knees does little for preparing the body to face the strain of even one long ultimate point. I knew that and was pleasantly surprised by how well my energy held up, even as I sat out most of the drills and the scrimmage at the end of practice. What escaped my attention was the reality that I would remain exhausted for the remainder of the day. And, the idea that such exertion would continue to sap my strength into today never even entered my mind. Well, it did, but I didn't honestly believe it. Of course, my valiant effort at practice did continue to affect me throughout the rest of the weekend. If that had been the only issue, I might have still been okay, but other factors also impacted my reality, knowing that I need to readjust my reality.

I had one task this week that my wife needed me to complete. I simply had to apply "weed and feed" to our lawn. Yet, I somehow managed to reach this weekend without accomplishing that relatively minor task. I had even reminded myself each day (except Friday) that I needed to get the fertilizing done. My wife was not thrilled on Saturday morning that my one task remained unfulfilled. We abated the tension by discussing the situation, but I knew I needed to get the job done before Saturday ended. The weather forecast predicted rain by the evening, which meant that I needed to mow the lawn and spread the chemicals before the sunset. Not a problem, I thought. Of course, I should have remembered that the "gods" don't like such human arrogance. I returned from practice as the rain began to fall. It had not started in Saint Paul by the time I got home; it simply waited until I brought my bag inside. When I returned to the driveway, the precipitation was heavier than a sprinkle. Still, I managed to mow and fertilize before things got bad. The problem was that I was already shot before I did the yard work. Taking care of those minor items took any reserves that I had left. It was barely 1 PM, and I was done for the day.

Clearly, plenty of Saturday remained. I only did a few more things before we left for Church. After Mass we had a surprise party for a friend's birthday. Then we headed home and got some food on the way. I ate late and took my medicine at 11 PM instead of 10 PM. The power went out over night, and I missed my second dose. I did take it at 4 AM, but then did not arise until 8:30 AM. Eventually, I "got ready," but we were 30 minutes late for the Mother's Day celebration at my sister's. The day was good, but I struggled to focus the entire time we celebrated with my mom. We finally got home at 6 PM. My wife and mom had enjoyed the day, but I had not been overly social, not had I done anything. While I eventually buckled down to accomplish a few things, I also managed to have a minor fight with my wife. I even snapped at my daughter and stressed out completely when I couldn't log on to the Science Museum of Minnesota's membership site. I did discover my error, but not until I had upset both of the wonderful women in my life.

In the end nothing horrible happened. I accomplished a few tasks and did uphold my duties. My wife even enjoyed her Mother's Day. But, I need to remember that bad things happen every day. Even when I feel like things can't get worse, I must recognize that they can and OFTEN do. Every day is a blessing, even when nothing goes correctly. I have done a remarkable job of letting myself experience the highs and lows of my life. Now, I must forgo the assumption that a week of negativity physically demands that I be rewarded in some capacity. I am owed NOTHING, and I must remained grounded and accepting of everything that life (and this condition and reality and God and fate and medical science and...you get the idea) brings my way. My goal needs to be staying grounded, regardless of what has (or has not) happened. I must stay humble, and I must avoid hubris.

Serendipity and Liars

Long ago, I had the chance to teach M. Scott Peck's book, The Road Less Traveled. Aside from using a line from a favorite Frost poem, I felt drawn to the book. While many of the stories and ideas had tremendous impact on me and my students, his discussion of serendipity fascinated me. The idea is that the right things often happen at the right time. One could try to use the word luck as a synonym, but serendipity feels far more intentional than blind luck. Peck's stories from his patients amazed me, but then I began to consider my own life. I found multiple examples of serendipity. I tend to use the concept of God, rather than serendipity, but the implication is the same. Periodically, we are lead to a greater sense of the world and ourselves by a force, a being, an entity far greater than ourselves. I also know that I am in one of those times right now.

Whether it is my incredible experiences of connecting with people in Facebook and MySpace (particularly around narcolepsy) or the act of writing this blog, numerous events have screamed at me that something much bigger is happening. The latest instance is a therapy approach called EMDR (Eye Movement Desensitization and Reprocessing). It is used primarily for people who suffer from post-traumatic stress disorder. A wonderful friend with whom I have recently reconnected (through Facebook no less) has been undergoing the treatment and suggested I look into it. Then, a woman I have never met raised PTSD in one of the Narcolepsy discussion topics. After trading a series of messages, we both released there were an unusual number of links between us. Finally, while exploring it further on the EMDR Institute's website, I found a list of therapists trained in EMDR. One of them is the mother of another dear friend. I know I need to pay attention to this.

I discussed EMDR with my therapist today, partly to process this serendipity that has struck and partly to get her reaction. She and I both agreed that I don't seem to have a clear event of PTSD, which would make EMDR a strange route to pursue. At the same time I do think it is worthwhile for me to examine my traumatic life events to see if one or more of them does have legs. I may also at least discuss the treatment generally with my friend's mom. The bottom line is that all of this is pushing me to explore my own psyche more. That is fantastic.

Peck has been on my mind for another reason too. He wrote another book called People of the Lie. The premise of that one is that certain people simply can't help but manipulate others. They are driven to think only of individual advancement and glory. When I first read that, I could not conceive of anyone who would fit so awful a description. But, as with serendipity, I began to realize that I have known people like that. In fact I had encountered them in many places. Recently, the book has come to the fore due to my wife's job. Multiple times each week, she needs to unload (on me) her frustration with a colleague who fits Peck's people of the lie perfectly. In many ways it is sad because it has driven my wife batty. She desperately needs to decompress, at times almost daily, because of the poison that this person injects into their office. Worst of all, the individual honestly believes that these actions are benefiting others, rather than simply existing as self-promotion. Thankfully, I believe my wife may not have to deal with this person much longer. Even last night, though she works to avoid this person, she needed to talk to know that she is not crazy. She hadn't even had a direct interaction, but the power of this liar (I am taking license with Peck's idea here) is so strong that even indirect contact can significantly wound someone as intelligent and as amazing as my wife. How sad!

I feel blessed to have had this chance to read Peck's work. It certainly has merit. Then again, as my students would tell you, I tend to find connections and insights everywhere. I get a little too excited about life in general.

Paradox

I have felt for years that paradox is the perfect word for capturing the essence of life. That insight only grows stronger as I continue to accept my condition. I am awestruck that the best way for me to gain "focus" is by relaxing and letting go. It stuns me that one of my greatest strengths, the ability to lead with authority and levity, is also a huge flaw. I often alienate people who find me overconfident. Or worse, I silence great ideas because I speak with such conviction that others don't want to challenge my approach. The longer I live, the more paradox confronts me on a daily (or even hourly) basis. With that, you would think I might realize the paradoxical nature of narcolepsy as soon as I was diagnosed.

I did not. My recent foray into reflection has helped me to see that this disease might be the biggest paradox yet. Simply at the surface, this condition is perfect in its nonsensical duality. Narcoleptics don't sleep well, resulting in extreme fatigue during the day. How freaky is that! Why is narcolepsy hard? Imagine this conversation.

Friend: Why are you tired?
Narcoleptic: I don't sleep well.
Friend: Why not?
Narcoleptic: I have narcolepsy.
Friend: Where you can fall asleep during the day?
Narcoleptic: Yes.
Friend: Then, you should get more sleep at night.
Narcoleptic: I can't. I don't sleep well.
Friend: Why not?

The insanity is that a narcoleptic NEVER sleeps well - night, day, naps, ever. I don't know how well I sleep these days, and I take a drug to knock me out at night. I don't expect others to "get" it because I barely do. Doctors certainly have no idea about the "why." Still, how funny is it that a person who is constantly sleepy does not sleep well? That is paradox.

For me, though, the paradox of this disease runs much deeper. I have spent my life in a constant state of fear. In my first therapy session with my current psychologist, she asked me to list my "worries." Literally, fifteen things came out of my mouth in a ten second burst. Her eyes grew huge before she composed herself. My immediate thought was, "that's not normal?" Apparently, it's not. People regularly remark that I seem so much calmer than I did when I was younger. Some of that is the result of years of therapy, formally and informally. But, it is also the narcolepsy. One of the biggest ironies (and in my mind, paradoxes) is that I think my narcolepsy has been at the core of many of my fears, but I would never have realized that without the condition slowing me down.

My whole life, I have earnestly believed the axiom that "ideal hands are the devil's plaything." In college I actually budgeted my time in 15 minute intervals, and I tried to stick to that schedule. Even now, I worry daily that I am not doing enough. The reality, of course, is that I am doing what I can, when I can. That is all any of us ever do. How worrying would ever assist me in getting more done is a complete mystery, and yet I fret all the time. Again, the weird situation is that without this narcolepsy, I would still be trying to push myself beyond any limit that I might see. And, I do think that the natural slowing of my body as the narcolepsy progressed is exactly what made me push harder. Some sub-conscious element of my brain recognized that my health was beginning to wane. Thus, I threw myself time and again into overdrive. I refused to allow myself the chance to let down. Now, I doubt that I could summon such a reserve for even a day, but even as I typed that part of me knows that I could - for a day or so. Then, I would pay for a week, or more.

Narcolepsy has given me a chance to remake my life. It has also completely undermined it. Paradox. This condition is one of the worst things I have ever encountered. And, it is one of the best. Paradox. The end reality, though, is that another word also applies when good and bad meet, allowing truth to settle somewhere in the middle - balance. Perhaps, that is the greatest paradox of all.

Western Medicine

Few things in this journey have upset me more than the realization that medical knowledge is incredible limited. I certainly don't blame my doctors. The human body is an incredible complex organic machine. My ire is more directed at the human hubris of believing that we "understand" so much about health. We don't! As advanced as medicine has become, we honestly understand only a fraction of how our bodies and genes and hormones and systems and environments all interact to produce our daily condition.

For me this dearth of insight is compounded by regularly being told I have "conditions" that are diagnoses of elimination. My bowels were, and still are, problematic. After extensive testing by a number of specialists, I firmly know that I have Irritable Bowel Syndrome. Of course that means nothing since no one actually knows what the "disease" is. IBS is a fancy way of saying, "your bowels are problematic, but we don't know why." Equally annoying are my sinuses. I definitely had, and still have, chronic sinusitis. My initial CT definitely showed that surgery would be the best course of action. Since that surgery in August of 2003, I have continued to be plagued by regular sinus infections and constant sinus swelling and inflammation. My ENT "vacuums" out my sinuses every six weeks, and I rinse my sinuses two different way twice each day. The crazy part is that the surgery worked! There is no reason why my sinuses should still be doing this, but two different ENTs, two different allergists and plenty of other doctors have been unable to find a reason. I am in that tiny fraction of sinus suffers that belie conventional knowledge.

And then there is narcolepsy. The first time that I fully realized narcolepsy is similar to my other conditions, I wanted to vomit - literally. Narcolepsy IS diagnosed by diagnostic testing. Pulmonary doctors have clearly defined methods to identify the disease. But, no one knows how the disease works. The best guess is that something is "wrong" in the sufferer's brain chemistry, likely a problem in the hypothalamus. Still, like IBS and my sinuses, all I can do is treat my symptoms. There is nothing I can do to improve my condition; I can only try to manage it. I feel like I am reach a level of acceptance with all of it, but it is so hard.

The final piece of my angst stems from the system itself. Managed care is great, until you get seriously ill. Specialists are amazing, until you don't fit neatly into a box. I have seen 18 specialists, 2 family practice doctors and an internal medicine doctor in the six and a half year journey since things became awful. All of the doctors have done their best, but they barely have time to see me in their offices, let alone talk to each other about my case. The one place that could happen is at the Mayo Clinic, but they aren't taking "new" patients and haven't been for two years. I can't believe that Western Medicine can be so advanced, and yet so backwards. Clearly, more than one system is involved - even if it is just my narcolepsy, yet a specialist won't even consider exploring those ideas. Part of it is the fear of malpractice, but it is also that a specialists knowledge base is so narrowly focused.

Thankfully, I have an acupuncturist, a chiropractor, a massage therapist, a therapist, a psychiatrist, and a men's group. All of them aid me in coping with the bigger picture of my life. That holistic approach will be what allows me to push through even the darkest days. But, what about the hundreds, maybe thousands, of people who also suffer the way I do, yet do not have all of these other resources. We need to find a better system. We need to incorporate more Eastern ideas into our medical approaches. More than anything, we need to begin treating the entire person and not just the fraction that seems to be "broken."

Surviving

I know that I am more than this disease, but that is often hard to remember. My narcolepsy has certainly been an adventure. I hope I am now at the point that I can begin to embrace both the loss and the gain that I have experienced.

I was diagnosed late in August of 2007. Of course, I had a previous sleep study in June of 2004, which showed I was, "a sleepy guy." Those are the doctor's actual words. It wasn't "real" narcolepsy because I didn't have REM sleep during my naps, but the average time for my naps was 6.5 minutes with nap four happening in 3 minutes. So, in the summer of 2004, I started taking methylphenidate. First, I only used 10 mg pills, but we soon move to a 10 mg pill in the AM with a 27 mg Concerta for the rest of the day.

I also have other health quirks (chronic sinusitis and IBS) that seemed to confuse everything. Often, I would chase one possible solution, but lose sight of other things going on in my body. Eventually, a wise doctor had me stop all of my drugs. While that didn't help me physically, it did open the door for me to have the second sleep study. This time, the tests clearly showed narcolepsy. I think one of the problems the first time around was that I was taking an anti-depressant. Those tend to suppress REM - the very thing we were trying to find.

The road since August of 2007 has been nuts. It is great to know that much of what I have been experiencing is the narcolepsy; the past seven years have been a steady decline in energy for me. But knowing and coping are two wildly different things. Part of my struggle has been simply accepting the idea of being disabled. The truth is that I simply can't do what I used to do. My body jsut doesn't work that way. Another part has been the battle to find the right medications. I tried Provigil, but am in that tiny group that reacts horribly to it. Provigil affected me the way large doses of stimulants tend to affect others. After that, my doctor had me try methylphenidate again, but 80 mg during the day was not nearly enough. We settled on amphetamine, which seems to work okay, except for the high blood pressure that it is creating. I get to take atenolol now since I was 150/100 at my last doctor appointment.

Still, I feel lucky. One, my narcolepsy is manageable. Two, I do not experience cataplexy, at least I don't think that I do. Three, I have a supportive spouse and a job that allows me to work part-time. Four, and most important, I needed to slow down in my life. I know that the narcolepsy has helped me to see what is important to me. That doesn't change the fact that this disease continues to frustrate and anger me, but it does help me to remain calm even as I struggle to get a simple task done.

I also know that my narcolepsy has forced me to open up more. I need to connect with other narcoleptics. I think I have found a support group, but I also just need to express my insights and ideas. Hence, I started this blog. Many of the posts will be about narcolepsy and my journey, but it will also cover anything and everything that enters my wee little brain. If anyone ever reads it, great. If not, great.