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.

Tremendous Teammates

I thoroughly enjoyed my four days in Duluth, although the drive home was a tad taxing. We were in snow and on snow covered roads for most of the trip. Fortunately, we got home safely. One element of the entire Duluth trip (that surprised me) was how often I invoked the name of my two teaching colleagues. I know that my attitude and approach to life is significantly better. Simply put, I am coming to terms with what it means to have narcolepsy. That said, though, I know that this year has been one of my best teaching experiences because I work with two amazing individuals.

Both of my co-teachers place their students ahead of everything else. They are full of compassion and truly listen to what students have to say. At the same time, they demand excellence from every students. Both know that students have a wide range of abilities, and they lavish praise upon each one, but want to push each student to her or his best. That means even more work for the teacher, but my teammates know those efforts will make a massive difference in helping these young women and men maximize potential. Beyond all of this, they love to have fun. Our classroom constantly resonates with laughter and joy.

The gentleman who handles social studies recently became a father. I know that he will be amazing as a parent. He has lived a tough life, but constantly looks for ways to learn from his experiences. He is also a tremendous practitioner of sound educational theory. He scientifically approaches every lesson and works to match his material to his students' developmental levels. Best of all, he holds himself to the high standards that he asks of his students. Justice permeates everything that he does. He even puts his own money on the line to help his students understand the importance of justice.

Our religion teacher is perhaps even more remarkable. She is still in her 20s, but has the wisdom of a 50 or 60 year old. Her calm, sage presence draws students to her. And, she holds each student in her heart and in her prayers. Her warmth and friendliness work in stunning unison with the rigorous demands that she also puts on the students. She pushes them, but also feeds their souls. I know that these young women and men will live significantly richer lives because they had her as their teacher. Best of all, she provides our ninth graders collegiate content in a form they can grasp.

I also adore that both of my colleagues see writing as the most important thing that any of can do in our classroom. In fact I would be hard pressed to say which of us is the most demanding within our grading of the writing. Regardless, our students are getting a great education because we do work together. I feel incredibly blessed to work with these two teachers. It remains a struggle to do even this course with my narcolepsy, but the knowledge that I have these two standing with me gives me strength.

Dalliance Day

What a good, but low-key (and weird), day. I got up and definitely felt better. Of course, my bowels did remind me all day that I was not completely out of the woods. Still, the fever and aches were gone - hooray! I had a small breakfast in the hotel lobby and then spent the morning doing things online. Eventually, we all headed out to see my grandmother. We had a nice lunch with her. Invariable, our manic genes all came out in someways. A few years ago, my mother, my grandmother, my sister, and I ALL tried to get things out to "help" get a meal ready. The kitchen we were in was literally 3 feet by 8 feet. Needless to say, 4 adults in that space doesn't work well. Today, it was mostly my mom and grandmother trying to out do each other, but I know that my sister and I both still feel the compulsion.

Lunch was great, though. It was leftovers from the party that I missed yesterday. My aunt came over when we finished. It was wonderful to see her too. After another hour of chit-chat, my dad, my sister, my daughter, and I headed out so grandma could do some "things" with her daughters. We headed to a local shopping spot in Duluth. It is actually a renovated brewery (Fitger's). My sister, my daughter, and I had a glorious time browsing the stories. We even did some window shopping outside (which is funny because the temp was below freezing) that lead us to some excellent chocolate. My dad called up a high school and college buddy. They decided to meet at a restaurant next to the shopping center.

The only "bad" part about my dad's plan is that it easily could have (and did) upset my mother. Their relationship constantly perplexes me. Like me, my mom seems to have extreme anxiety and tends to want to "take care" of everything. My dad, on the other hand, tends to be oblivious to how much he can upset her, or at other times purposely tries to antagonize her. Fortunately, by the time we picked up my mom, she had decided that the restaurant would be a good place to eat. Plus, my sister and I figured that she too would love to she their mutual friends. That is another trait I know that I share with my mother - the inability to allow oneself to enjoy a situation.

The dinner was good, but toward the end things got dicey. My daughter was completely out of place and wanted to head back to the hotel. Plus, my dad and one of his buddies kept talking to her, which she was not so keen about. Gratefully, we did get out of there before she completely melted down. Back at the hotel, I went swimming with her and had fun just hanging out. The hotel we are at has s'more cookouts every night. A s'more is marshmallows and chocolate between two graham crackers. Usually, you heat the marshmallows over hot coals. Not wanting to stand outside tonight, my daughter and I decide we would heat the marshmallows in the microwave in our room. Now, we are enjoying a quiet evening in the room.

Throughout the day, I did feel a bit ill still. I also knew that my narcolepsy was dragging me down some. But, I rolled with the moments and stayed present with each event. In many ways, I did very little, but I also did tons of things. I connected with people - online, in person, over the phone. I had fun in active and passive ways. I rested. I exercised (walking and swimming). It was a simple day and a great day. Far too often, those two are treated as opposites, when they are far better as synonyms. We head home tomorrow, and while I expect more tension (particularly from my parents), I also know that the journey home will be fun. I am looking forward to seeing my wife. I am also excited and hopeful about where this next year will take us.

Sick Sad Sunday

Apparently, when your spouse gets sick, it means you can potentially get the same thing. Whatever messed up my wife's stomach on December 26 got me too. I spent all day yesterday feeling horrid. Thankfully, I am much better today. My bowels are still dicey, but at least I feel like I can eat something. Also, I don't ache everywhere. I think the most frustrating thing was that even extra strength acetaminophen did not seem to help - yuck!

The bright spot in the day, though, is that I simply gave into the sickness. My grandmother was having a large gathering of family. While I was sad to miss it, I didn't feel bad about that. Nor did I feel rotten about spending a day in bed. I "could've" tried to do schoolwork, but I know I would not have been focused. I simply chose to lay down and read a book. That was good for me too. As I have said so often lately, even a year ago, I might have tried to fight through the illness. But, I know enough now to realize that being somewhere absolutely miserable is not helpful to anyone, let alone to me.

Plus, I will get to see some of the folks over the next day or two. My sister, my daughter, my parents, and I are still in Duluth until tomorrow. It should be fun to have a few more low key days. I think I am also enjoying taking smaller doses of my stimulants right now. It is definitely making me more relaxed and low key. Of course, I remain convinced that I will need to return to nearly full doses when school re-starts in a week. But, that is seven days a way. I plan to enjoy my break until then!

Quiet Calm

Occasionally, I am lucky enough to realize how great my life is. Yes, I have a chronic illness. Yes, many things that I loved to do have been "taken" from me. Yes, I all too often can't be the husband, dad, son, brother, friend, teacher, athlete, man, or person that I want to be. But, I am blessed. I have a good life. My partner loves me despite my many flaws. The young woman we are raising continually blows my mind with her brilliance, wisdom, and compassion. I also have tons for friends, a job I love, and innumerable joys that dancing in and out of my life.

Today has been a great day to reflect on all of that. My wife feels much better and her stomach thing truly appears to be a 24-hour bug. We enjoyed a lazy morning of getting ready for our trip to Duluth. The ride up was also enjoyable. I had rich, earnest conversations with the love of my life and my parents. Even when we arrived in Duluth and my parents began acting like petulant teens, the Bed and Breakfast we are at is one of my favorite places in all the world. Then, we had Sammy's Pizza (yum, but I do need to stop eating gluten again SOON) and had a lovely night with my grandmother, who is nearing ninety.

Now, I am in the sitting room of the B & B. My wife is resting upstairs, my daughter is having fun with my dad, I just had a lovely cup of mint tea, and many dear friends sent me notes on Facebook. My mother (oddly, but not surprisingly) is cleaning and organizing things in the B & B. It's who she is. I do hope to chat with her soon about mental health, but tonight would not be a good time. I am sure she has had some brandy, and she is furious with my dad because of something that happened when they left Portland. Hopefully, they will both enjoy each other's company tomorrow.

Maybe, what I am most grateful for tonight is that I continue to activity work to have a healthy mental outlook. So much of what I see in my mother, I also know is in me. But, I work daily to challenge those traits and to let go of the compulsion to "take care" of the world. I do hope that talking to her will get her to consider therapy and medication, but I feel grounded enough to know that I can't control what she does. I can only control my reaction. Both my parents have been driving me nuts tonight, but I still salvaged my evening. I turned my attention and energy to things that matter to me, rather than spending it on their problems. Ironically, their actions and behaviors (irritating as they are) also qualify as gifts to me. I continue to learn from them, even at forty. Granted, I am learning how NOT to act, but it is a gift nonetheless.

Family Frenzy

My parents are here. Generally, that is a good thing, but this evening, my mother won't stop moving. It is great that someone is doing all of the cleaning, but I wish she could let herself relax. I must admit, however, that I am feeling minimal guilt about the situation. In the past, I think I might have tried to compete with her, but the reality is that I did WAY more than my share today. I had to do that and was proud to be able to help out, but making my kitchen spotless is simply not in the cards for me tonight. If my mom feels compelled to do it, more power to her. Actually, her actions confirm that I need to talk to her about her mental health, but that is a discussion for Duluth in a few days, or during a quiet walk next weekend.

Beyond my mother's manic antics, the day has been another eyeopener for me. I awoke this morning knowing that my wife might need me to do the shopping for our second Christmas. We had our own yesterday, opening our presents to each other and the ones from my wife's family. But, with my parents arriving last night, today was the celebration with them and my sister and her husband. Given that my wife had done virtually everything in the house during my medication holiday, I was more than willing to pick up some of the slack. Sadly, my wife needed way more from me than just some shopping. She has a stomach bug and spent the entire day in bed, other than a couple trips to vomit and a brief appearance during the gift exchange. My wife rarely gets sick like this, and part of the reason is that she abhors vomiting.

Thus, as I left on my shopping excursion, I knew I was likely doing the cooking today too. I chose again today to only take 10 mg this morning. I felt alert while driving and even decided to hit the 50% off sale at Target before getting the groceries. I got some great stuff there, then picked up some prescriptions, and finally hit the grocery store. All in all, my quick trip turned into a three hour adventure. I arrived home to a sicker wife and guests who might arrive at any moment. I got stuff put away and started cooking. My mom helped, and when my sister arrived, so did she. We eventually got everything prepared, and I took my second dose of 10 mg at 2 PM.

It blew my mind that I did all of that with only 10 mg of amphetamine. I know that I tend to respond well to "crisis" situations, but I am positive that seven days ago, 10 mg of amphetamine would have put me to sleep even if my house was on fire! This medication holiday thing borders on the miraculous. Granted, I was basically done for the day at 2 PM. Even with the second dose, I was exhausted. Still, I managed to be social and functional for the rest of the day. Since it is likely that I will be doing the driving tomorrow, I will need to consider 20 mg instead of 10 mg in the morning, but we are leaving at 1 PM, so maybe I will take 10 mg for the first dose and see how I feel. I know that my doses will need to go up when school starts again. I also know that I will definitely continue to take medication holidays. Now, if I can just find a way to stop having my mom do work!

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 Drifting

First and foremost, I must say that day five is definitely better than day four. I still don't know if it is the natural course of my med holiday, or the acupuncture, but I definitely had more energy today. The morning was still awful (I finally got out of bed at 9:30 AM because I HAD to leave the house at 10 AM), but once I got going, I felt okay. I was definitely still sleepy, and I kept my exertion to a minimum, but I did not dose as I had done during the first four days. I even managed to be decently helpful to my wife - which is good since I set her off while we were shopping (not so cool on Christmas Eve).

Beyond the med holiday, though, today is Christmas Eve. I often work to keep religion out of my blog, partly because I see narcolepsy as something that transcends religious affiliation, but also because I know that people of many faiths read this blog. While I know that my Roman Catholic faith is deeply a part of who I am, I would never want to proselytize here and offend someone of a different religious background, or someone who holds a more agnostic, or atheistic, or scientific view of the universe. Having said all of that, though, I must say Merry Christmas to those who are Christian (and Happy Hanukkah to those who are Jewish - though I know that it is a minor holiday I do think the efforts and actions of the Maccabees are way cool - and joyous Kwanzaa to those who celebrate and Happy New Year to those on a western calendar and remember that the whole month is Universal Human Rights Month, as well as World AIDS month).

I had a powerful experience at Mass tonight. First of all, my daughter sang in the youth choir. Not only was it amazing to watch her perform, but it was also wild to have other people see her who had not for some time. She is definitely a young woman in her appearance and her demeanor. It is both amazing and frightening. Beyond that, though, our priest gave his homily about Apollo 13 and "drifting in to nothingness" in space. His primary point was that the entire universe is the creation of Divine force. Whether it is God, or some other spiritual force, the reality is that the energy behind the universe is the same here and billions of light years away. All life and energy in the universe is good and blessed because it was all part of the plan. Earth is not the epicenter of it all. Rather, we are one small piece of the puzzle. It gave me a who new perspective on these past few days. As much as I felt like I was drifting along doing "nothing" in my stupor, the reality is that everything I do is part of something far greater than myself. I can no more drift away than I can disappear or levitate because God loves me always. It is a powerful message to consider.

I hope no one was offended by my theological turn here. While I hold strongly to my own faith, I truly believe that "truth" is in the midst of all beliefs and faiths. How could I, or any human, ever hope to know the mind of something or someone divine? All I know is that I am blessed to have such a good life, a job I enjoy, and a fantastic family. I hope that everyone else in this world has a chance to experience the joy that has been given to me. Narcolepsy is rotten, but I would not trade my life for anything, because the whole package is mine - the good and the bad. Peace be unto all of you!

Faithful Fatigue

When I got out of bed this morning (I hesitate to call the experience "waking up"), I was convinced that day four would be far worse than day three. The extreme effort of feeding three cats left me exhausted for the next hour. I eventually stumbled to the living room and promptly slept for the next hour and a half. Finally, I forced myself to shower around 10 AM. My wife and daughter had dental appointments at 11 AM. I didn't fall asleep in the lounge and did hang in through the other errands. Lunch was good too.

Then, at acupuncture, I was convinced I would fall asleep. I often hover in a near sleep state, but was positive that my body would simply give out today without the stimulants. Interestingly, I found my energy growing throughout the forty minutes that the needles were in me. Some of that might have been the electricity surging into the four needles in my lower legs, but that is not something new. I have been functional enough the rest of the day that I wonder if I have turned a corner on the withdrawal aspect. Certainly, tomorrow will be what it will be, but it is fascinating to ponder how all of this is impacting my body. I also must admit that part of me wishes I could stop the stimulants and just have an acupuncture treatment each morning. Of course that would be impossible, unless my amazing wife wants to spend two years learning how to be an acupuncturists on top of being the best medical writer and editor that I know (or that most, if not all, of the doctors who work with her know as well). The chiropractic appointment after the acupuncture also seemed to help.

That being said, it is incredible to realize how sleepy I truly am. Narcolepsy truly is a stunning condition. I know that my Xyrem doses knock me out at night. I get as good a sleep as I can most nights. That means that even with a chemically induced sleep, something is so out of whack that I remain exhausted for a majority of every day. It is humbling to be this dependent on drugs, but it is also good to understand what my body can and cannot do. As I continue to learn more about my condition, it will be fascinating to see where I will go and what life will bring me. Perhaps I will some day be one of those incredible PWNs who does not take stimulants, a person who is comfortable doing what his body allows rather than one who pushes himself to the extreme.

It will be cool to see what tomorrow brings. I need to go to the dentist at 10:30 AM. We also have a few more errands to run. Plus, we need to go to Mass at 4 PM. My daughter is singing in the pre-Mass caroling. I hope that I have a little more energy than I have had the past few days. At the same time, whatever I can muster will be just fine. I have no delusion that I will miraculously "recover." I also know that if I am even more wiped out, I will simply accept that. I have no ability to control the situation. It will also be good to recognize what five days without stimulants is like. That way, I will have more insight for the next medication holiday, which I hope will be similar in length. Who knows, I might even be able to do it during my spring break. I definitely am hoping that I can take a break for at least a week during the summer of 2009.

Missing My Meds?

I am on day three of my med holiday. I actually posted it as my Facebook status and a number of PWNs commented. One of the best responses was, "why can't med holidays be as fun as they sound?" On one level I completely agree, but another friend posted that lazy days watching movies aren't all that bad. I certainly see that point too. Since this is my second attempt at a med holiday, I am still learning what they are like. I know that it is the right thing to do for my body, but I also know that day three was definitely tougher than day two. My first attempt in August was only two days long, and I knew that I would have some functionality during the first day, but that the second would be difficult. Sadly, I actually thought that day three might be better. I was wrong.

I have spent the day feeling physically ill, which I know is the withdrawal. It is amazing how even a theraputic dose of a medication can alter your biological baseline so drastically. I can't even imagine how hard it must be for an addict to get off of a drug. The other difficult aspect of the day has been my inability to stay alert for more than 30 minutes at a time. I have managed to do a few things around the house, but I have also crashed repeatedly. Some of that is also the withdrawal, but much of it is "untreated narcolepsy." I am humbled by how dependent I am on my amphetamine. Could I live without it? Yes, but I would not be able to teach - not even part-time. I also have spent the day wondering what it would be like to try driving like this. I have no intention of trying to do that, but it is frightening to realize that without my stimulants I could be completely dependent on others to transport me places.

The other side of that, though, is a gratefulness that I am able to use stimulants to have some level of functionality. I have a number of PWN friends who are unable to drive or work even with stumulants. Others can't find a stimulant that will work or that their bodies can tolerate. The insidious nature of this condition constantly stuns me. I am blessed that my narcolepsy has not completely undermined my life. I realize that it is all a matter of perspective, but I definitely know I would be struggling more if I had to let go of even more of what I "want" to do. Yes, I have lost much, but I am still able to do a job I love and help my family and my friends.

Of course, I certainly recognize that my narcolepsy can progress. Perhaps in another year or two (or month or two), I could reach a point where driving or working will not be possible. I hope that I will be able to accept those things with the same day-by-day approach that has allowed me to remain upbeat during the start of this journey. While I hope those things never come, I understand that much of that is out of my control. Narcolepsy will run its course. I just hope that I can maintain my own ability to accept what the disease brings and then make my own path and decisions.

Tomorrow will be fascinating because I have an acupuncture appointment scheduled. It will be the first time that I have acupuntuncture without a stimulant in my body. Even when I did acupuncture the first time (in 2005), I had methylphenidate and Concerta in my body. And, when I went off all of my meds before I got my narcolepsy diagnosis in 2007, I was going to Langford Chiropractic, but had not started acupuncture there yet. I am not sure if I had any acupuncture during my unintended med holiday last December - when Provigil became a non-option and I had no other stumulant. I will be interested to see how my body responds without the amphetamine.

I guess the final thing that has intriguied me these past three days is the fact that some PWNs do not take stimulants. Some don't need to take them - Xyrem does the trick on its own. Other, though, willingly forgo them. I can't do that, yet. I still want to work at my job. But, it is interesting to consider what I might be able to do without a stumulant. I know that once the withdrawal aspect ended, I would be more functional than I have been these past three days. The question would be, though, how much energy would I have? Perhaps the time will come when I can explore that. For now, I like the idea of stopping my meds for a time, then starting again. I know the amphetamine felt more effective after I did this for two days in August. It will be interesting to see what happens with my longer break this time. It is interesting that although I could not "feel" the effect, I definitely know that the amphetamine was working in DEcember because without it, there is no way I could have made it to work each day.

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.

Conscience Comments

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

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

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

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

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

Health Habits

It is frighteningly obvious to me that I need to modify what I am doing in my life, particularly when it comes to eating and exercising. When my stimulants were stripping weight out of me, I began eating huge bowls of ice cream simply to prevent weight loss. Of course, when I started taking heart meds (because my stimulants sent my BP sky high), my metabolism also seemed to slow. I don't eat as much ice cream now, but I still eat some. I definitely need to stop doing that. My weight has steadily risen throughout the summer and fall. I can't afford to get any heavier.

I also need to get back into a much better groove when it comes to my diet. I am not eating a lot of gluten, but I have some at least three or four days a week. Beyond knowing that the gluten makes my digestion worse, I am also sure that it exacerbates my sinus issues. I need to buy healthier food and stop using junk food for comfort. I am hoping that by naming this, I will own my commitment to myself.

Beyond the food issues, I need to begin working out. While exercise will certainly help with my weight, even more importantly I will begin gain back some physcial strength. My knees have begun to hurt again. I am also sure that some of my fatigue is a result of my lack of any kind of endurance. My regiment will need to start slowly. I clearly do not want to overexert myself. I remember all too well how sick I got this summer when I pushed to hard. Still, by building muscular strength, I am certain I will gain mental and emotional fortitude. As always, my concern remains time. I hate that each day seems to only provide me limited windows of energy. Yet, that is the reality. Getting healthy is the best thing for me, thus is must become my highest priority. It does not mean that I won't do other things, but it does mean that I have to stop waiting for some free time. There is no free time! If I intend to get in shape, I must give up other things, or simply know that I will not put much energy into my other activities.

My goal is to work out three times between now and next Friday. I also will minimize sweets and go the entire week without eating gluten. I think the goals are realistic, but we will see what my reporting brings next Friday.

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.

Curious Questions

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

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

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

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

Managed Madness

Life continues to roll along. I have survived until the end of my first trimester at school. My wife has returned from visiting her family for her brother's funeral. Thanksgiving break is nearly here. I am stunned at my exhaustion, but also am impressed by my resilience. The ferocity of life has not broken my spirits. Instead, I find that I am getting better at acceptance. My "slump" continues, but I am relatively at peace with that. I have managed to get a few things done each day, even as my sleepiness seems to be growing again. In fact, I nearly fell asleep in the mid-afternoon yesterday. Regardless, though, I know that I am accomplishing what I can.

Certainly, I would love to do more each day, but I recognize that it will continue to take time. I desperately want to work exercise and yoga into my daily routine. I also want to have more order in my daily life. Gratefully, I am gaining enough wisdom to see that those things will take large stretches of time to become habit. Beyond adopting a "little by little" approach to such goals, I also understand that lifestyle choices that my wife and I have made certainly diminish the possibilities of regular routines. What I can do, though, is continue to evaluate what commitments in my life I should keep and which I would be better off letting go. The process is not easy, but it is honest and needed.

More than anything, I hope to find stability within my life with narcolepsy. Certainly, the condition is making my life difficult of late, but I know that I also have a hand in that. I continue to push myself at school and in the evenings. I am not sure if I can do my job "well" and be a good parent and husband without doing that, but the exertion is definitely fomenting the strength of my narcolepsy. That said, I see my narcolepsy as an even greater blessing of late. Hardship and suffering are not something I would wish on others, but I definitely find that I learn a great deal from them. I am certain that my life is more rich because my narcolepsy helps me to appreciate even the smallest successes. I adore paradox! Truly I do.

I have no idea how I will continue to negotiate the chaos that is my daily life, but I don't plan to spend time dwelling on it. My goal remains making it from one moment to the next, one day to the next. Living in the present, being mindful of now, is what has grounded me so well of late. I know it is the proper path for my continued journey.

Sleepy Sadness

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

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

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

Happy Halloween

Ready for the scariest aspect of my Halloween post? I "started" it on October 31. Basically, I typed a title and went to bed because I was exhausted that night. The NEXT time that I even looked at the post, or this blog, was today - November 18! The added irony is that my previous post (which I also finished today, but had written most of on October 30) commented extensively on the strange sensation of days lasting for weeks in October. Needless to say, November has been another story.

I can't believe how long it has been since I have written here. I know that I have been feeling that loss within my stress levels and my physical well being. I know I need to set better patterns, but it gets hard when my energy keeps dropping while my workload never ceases to build - yuck! My depression/anxiety have definitely been heightened, but I am still managing to stay balanced, most of the time. I do beat myself up in some capacity daily. What has grown in strength, though, is my ability to stop my inner tirades and to own the reality that I am doing the best that I can.

We had a weird Halloween this year. My daughter spent the whole weekend with a friend. My wife was horribly sick. I announced a football game. I think it was the first time that at least two of us were not together for the evening. I find that scary too. It is the direction that I should expect things to move. My daughter is definitely growing into a young woman. Still, it is hard to realize that soon my middle schooler will be on her way to college. That being said, I know that I have many days ahead with which I can challenge both of these amazing women in my life. I also must add that my daughter went trick-or-treating as a sandwich. She made "bread" out of foam. She also had lettuce, tomato and swiss cheese in the sandwich. It was brilliant. How lucky am I to have a daughter who WANTED to be a sandwich, and a year ago she was a crate of oranges. I love it!

Odd October

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

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

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

Still Spinning

While I do feel like I am on more of an even keel, my life continues to vex. I am exhausted constantly of late, but I am still managing to get through each day. Our house remains a disaster, but a huge piece of that is the ongoing renovations. The new windows and doors are in, but the new siding was just started today (Wednesday - even if the post says that I wrote it last Friday). Hopefully, things will be done soon. We will need to stain the insides of the windows and paint the doors. We will also need to fix the plaster that broke apart during the window installation. But, once that is done, it will be wonderful to get our house back in order - literally.

I am hoping I can accomplish the same thing at work. School has had its ups and downs, but I continue to love working with new team. Our students continue to do good work. I also am enjoying the energy of my two colleagues. The problem remains keeping up with the correcting, but I continue to remind myself that I am doing the best that I can. We have just started a novel this week, and I am thoroughly overjoyed to teach literature again. While teaching has many aspects that I adore, nothing gets me more excited than pulling apart a book. Thus far, the students seem to be deeply engaged by it. I just hope that continues.

I need to get to sleep, but I also know that as I work to get more structure in my life, I MUST do three things. One, I need to be more rigid about "bed time." I need to get to sleep at 10 PM every night. I have not been doing that, and I am getting close to the point that I will wind up paying for these late nights. Two, I need to begin exercising and doing yoga on a consistent basis. Those are vital to me truly becoming balanced in my life. Finally, I MUST plan time blocks each day. I need to limit my expectations, but I also need to define clearly the time chunks of each day. Without that I won't make small amounts of progress on the multiple responsibilities in my life. Time to rest needs to be a part of that, but setting the habit of doing small amounts of work daily will allow me to be more successful.

MOONS Madness

This past week I twice tried to get decent photos of the full moon. The pictures from the first batch are okay. I have not actually looked at the second set yet. I want them because I am helping get the Midwest Organization of Narcolepsy Support - Minnesota chapter (MOONS-MN) organized. We have set up a new website with a new address - www.moonscentral.net. We are also trying to get the names and addresses for the group organized into a database. That way, we can generate all kinds of good data and be able to help each other more.

Beyond the website, I also traveled to the Minnesota Secretary of State's office to see if the Minnesota Narcolepsy Association could become "re-established" and have the name changed to MOONS. Turns out, it can be done. I filed the appropriate paperwork and now need to get the other planning group folks organized so we can adjust the by-laws appropriately. I also think that this move will help with the dues issues. As nutty as the past few weeks have been, I am proud of myself for taking care of this. Not only is MOONS-MN a non-profit in the state of Minnesota, but I also plan to check with the federal government to see if the Minnesota Narcolepsy Association (now MOONS-MN) still has federal nonprofit status under 501 (c)(3). All around the situation is excellent.

I have high hopes for our group. The two people who got us started are as committed as ever. We also have at least six other people deeply driven to see this group thrive. Now that we know that we are a non-profit for sure, we have a lot of fantastic avenues available. I truly think that MOONS can do awesome work. It gives hope that I will help all of these folks make a difference in the battle against narcolepsy.

Wild Week(s)

I know I need to stop harping on the rapidity of my daily life, but somehow the first half of October simply disappeared. Amid the Narcolepsy Network conference, crazy days at work, two injuries for my daughter, a week long school trip for my daughter, and construction on my house, I literally turned around and discovered that half of this month simply disappeared. At least I can vaguely piece together the events of the last couple weeks. I also know that I have "done good work" in the first half of this month. Nonetheless, I sincerely hope that the pace of my life slows a bit.

I can't foresee that happening, though. We still have a great deal of construction that needs to happen. My wife is also heading out of town for a conference. That means that I am a solo parent for this next week. What I need to do is breathe and relax. I also need to take each thing one step at a time. Of course, I seem to struggle to even take a half step at a time right now. I have made progress on a few things each day, but I continue to not get enough done. Our house is a mess. My correcting needs to be finished. I also need to get a number of things prepared for our next unit at school. And, I feel exhausted.

One of the worst things is that I have been fairly snappy today at home. Neither my wife, nor my daughter deserve that, but I am having a tough time grounding myself. My wife has a ton to get done before she leaves town. She is tense, and I wanted to stay out of her way today. Unfortunately, I assumed that she was going to head into her office. Instead, she stayed around the house and organized many things. Thus, I waited to do things I had hoped to accomplish. So, now, I have more to try to get done tomorrow. My daughter is simply a wonderful, but loud almost twelve year old. She spent most of the day commenting on many things that frustrate here and declaring her intentions to do this, that and the other thing. It might have been funny if I had not been so anxious. Rather than laugh at her antics, each word out of her mouth clicked my blood pressure up another notch.

These are the moments that drive me insane about narcolepsy. Because I am sleepy and exhausted, I muddle through my own day, AND I get angry at the people that I love the most because I can't handle their moods. I need to get into bed and go to sleep. Tomorrow is another day, and I will make the best of it. Whatever I can get done will be enough. It might not be what I want, but it will have to do.

Insightful Info One

My plan is to post on topics from the conference throughout the next few days. I need to do this in small chunks or I will never get it done. Please feel free to use the comments section of each post as a place to ask questions. I feel like I learned something in every session that I attended. Part of the reason the weekend overwhelmed me is that information kept buzzing around my brain. All week, I have been trying to remain mindful of each moment, but the thoughts and insights of the conference continue to bombard me. Hopefully, getting some of them out of my head (and into electrons) will allow me to function a bit better at work and around my house.

The most incredible scientific/medical moment of the weekend was the keynote address. I figured listening to Dr. Emmanuel Mignot would be a powerful experience (he is one of the two leading researchers of narcolepsy in the world. The other is Dr. Masashi Yanagisawa at the University of Texas Southwestern Medical Center). Dr. Mignot heads up the Center for Narcolepsy at Standford. He is once again on the verge of a major break through. Here are the basics from his talk:

1. They are using the Human Genome work and Affymetrix 6.0 Array Set: Genome Wide Association to look for other common variants within the genomes of people with narcolepsy with cataplexy. The Array allows blood samples to be tested against 906,600 Single Nucleotide Polymorphisms and 946,000 Copy Number Variations. Thus, with massive sample groups, a research can find common variants within common disease groups. This same testing is being used for a number of other common diseases (including many autoimmune diseases) like Celiac's Disease and Irritable Bowel Syndrome. Basically, the researcher wants to find a high p-value.

2. The paper published by Japanese scientists and Dr. Mignot at the end of September found a couple of genes in a study in Japan that had a smaller population sample (222 PWNs w/ C vs. 389 Control subjects). The two genes involved in the common variant both have roles in the sleep cycle. The study was repeated using a Korean group, a Caucasian group and an African-American group. The correlation was present in the Korean group, but not the other two. So that variant is likely only in Asian populations.

3. Dr. Mignot did a much larger study in the U.S. He tested 809 PWNs w/ cataplexy against 1120 Controls (all who had HLA-DQB1*0602 - this is the autoimmune factor that is definitely involved in causing narcolepsy). While Dr. Mignot did not tell us the name of the gene that they found, he did say that they found one. He also said that the protein that it controls is a part of the immune system and works with HLA like a hand and glove relationship. Needless to say, he is extremely excited about this. The p-value was 10 to the 12th power (which is insanely high). He still must replicate the results before he can publish, but he believes that this is a major discovery. While he still needs blood from 400 more PWNs w/ cataplexy in the U.S. to finish the replication, he is also doing a study in Japan with 800 PWNs and 800 Controls.

4. Finally, he has had the chance to work with five PWNs within a few months of symptom onset. As a result, he has done a western blot on them from their liver and found the same triplet of results. The five also all had recent viral infections and corresponding anti-infection antibodies. There needs to be far more research done, but he believes that Immunologists could devise a way to interrupt the disease process/autoimmune response that leads to narcolepsy.

The only part that is hard in all of this is that it is focused on Narcolepsy with Cataplexy. I might have abnormal or rare cataplexy, but am not sure. Even if I do, I am grouped in the same catagory of Narcolepsy without Cataplexy. As a result of that, my version of this disease might be highly different than what Dr. Mignot has discovered. I hope not. He certainly believes that figuring out Narcolepsy with Cataplexy will provide insights into the full spectrum of Narcolepsy. Nonetheless, it is unnerving to think that what I have is MORE complex than what his YEARS of research have uncovered. Still, it is exciting. The part that gives me the most hope is the clear link to some type of infectious agent having a role as a potential trigger. Even the remote possibility that this condition might be connected to my four bouts of Mono and/or my chronic toncillitis and/or my chronic sinusitis is thrilling.

Here is a link to a published Google Doc of my notes - http://docs.google.com/Doc?id=d6qf3b7_613mp98wg8. Folks should feel free to check them out. The talk was amazing. Perhaps the funniest thing is that Dr. Mignot completely seems like the absent minded, but brilliant, professor type. His clothes were fairly rumpled and a friend of mine told me that he reminds her of Dr. Oliver Sacks (whose life story was made into the movie Awakenings - Robin Williams plays the Sacks character, Dr. Sayer). Dr. Sacks is also brilliant, but can't seem to button his own clothes correctly. I always find it refreshing when "ordinary" (or even odd-looking) people prove to be extraordinary. Dr. Mignot certainly fits the bill!

Disgusting Delay

It is pathetic that I had an amazing experience at the Narcolepsy Network Conference, and THEN I don't write anything about it for almost a week. I also know that I won't actually be able to "catch up" tonight. Still, I knew that I had to relay at least some of the magic that the weekend brought. The weirdest thing is that the "slump" I was in the few weeks before the conference, definitely continued this week. In fact, my co-teachers sent me home on Monday. I was glad that they did, and I now know that I will need to ask for the day after the conference every time that I attend it (which I hope will be a yearly occurrence). Sadly, though, I have remained "off" the entire week. Some of it is simply fatigue. The other problem is that our grades were also due this week. Thus, I killed myself on Tuesday night (and Wednesday morning). I am glad, though, that other than one meltdown, I did hold it together. Much of that should be attributed to the residual joy of the weekend!

As I predicted, nothing could have prepared me for how much I would enjoy the weekend. I knew it would be incredible, and yet the it exceeded my wildest expectations. The amount that I learned in the keynote session alone blew my mind. Mr. Mignot, who runs the lab at Stanford and has had a hand in every major narcolepsy discovery in the last fifteen years, presented preliminary data that points to a clear understanding of the mechanism of narcolepsy's cause. It might not do much good for people who already have narcolepsy, but it will help in developing treatment. It could also mean a reduction in cases. Basically, Dr. Mignot has found a second gene that is involved in narcolepsy. The protein that it controls works in the autoimmune system like a glove to HLA's hand. Researchers already knew that HLA was involved in the destruction of the hypocretin producing cells in the hypothalmus. If Dr. Mignot is right, and this other gene is also involved, he may have proven that narcolepsy is an autoimmune disease. The other element he seems to have undercovered is that a person with these genes needs to experience an intense viral infection for the genes to be activated. Since I have had mono four times, I find that fascinating. I will definitely write more about this in a later entry, but suffice it to say, my knowledge of narcolepsy grew exponentially every second of the conference.

That said, the best part of the conference was meeting other PWNs. The information paled in comparison. Some people at the conference, I have known for quite some time. There were four people from the Minnesota MOONS group also attending the conference. I loved the chance to spend time with them over the three days. I also knew a number of people at the conference from spending time on narcolepsy forums through Facebook, MySpace and the Narcolepsy Network site. To meet them face-to-face, though, was truly breath-taking. Individuals who have been a major part of my life (some of them daily) during the past seven months suddenly appeared before me as flesh and blood. It was glorious. Even better, they are now even more firmly my friends. Even better, though, I made a number of friends who had never been a part of my life before Friday night. Whether it is the young man from Great Britain who battled his government to get the medicine that he needs or the loving dad from Wisconsin who wants to manage his narcolepsy so he can love his children as best he can, I found myself awed by the stories, the people, the love and the determination. People with narcolepsy live lives of meaning and purpose. They treasure each second because sleepiness is always around the next corner.

Having said all of this, the highlight of my weekend was getting a chance to have a much better understanding and insight into someone I deeply respect. The physician who co-leads our Minnesota support group is brilliant. She had to be one of the most sought out people throughout the weekend. I don't know if I have ever met a physician who more clearly personifies compassion and commitment. What made my time with her so wonderful, ironically, is that we interacted as friends. While I have no doubt that she is the best neurologist in Minnesota (and likely the midwest), particularly in terms of sleep issues, I don't want her to be my doctor. I would much rather have her be my friend. The entire experience made the weekend phenomenal. I am grateful for every second.

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.

Bursting Brains

I need to get to bed, but my mind has been spinning all night. My day at school was insane and an emotional roller coaster. I have not packed yet for the narcolepsy conference. The VP debate enraged me in every conceivable way. And, I feel like I should do everything I can for my wife before I go. That being said, I know that all of these things are out of my control, except maybe the packing. Although, having taken my Xyrem, I doubt that my packing would be effective at this time.

Writing late night certainly helped my mood. I honestly believe that openly owning the realities of life frees me from many of these issues. Rather than pretending that I can do everything, unloading as I did last night provides me the grounding that I need to accept my life. I have a chronic illness. It causes me to be fatigued and exhausted every moment of every day, even when I take large doses of stimulants. As a result I can NOT do more than I am. My work and efforts as a husband, dad, teacher, friend, person, citizen and PWN are good enough. The fact that I accomplish anything is awesome because I have narcolepsy.

I need to head to my bed, knowing that tomorrow will bring its own challenges and realities. I do think I am getting better at the "acceptance" thing, but it still drives me nuts at times that I can't do what I want. Sleep is in order though. In fact it is imminent since the Xyrem is reaching full force. Tomorrow, I am bound for Milwaukee. I can't wait!

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?

September Spins (away)

How in the world is today September 30?!? I find it fascinating how time is relative. Moments in my day felt like they might last an eternity, but this month flew by in mere seconds. It is crazy. And, invariably, narcolepsy only exacerbates all of it. I woke up this morning feeling like I had been hit by a truck. I don't know when or how I woke up, but somehow by the middle of my first period of teaching, I was frantically creating handouts for my students, as well as their websites for our new projects. It feels surreal at times.

When the school day ended, I managed to blank out that I had a doctor's appointment. Fortunately, I still left the building with just enough time to get my daughter, bring her home and then return to my allergist's office. I then dashed home, ate dinner and got things together for my daughter's volleyball practice. The next thing I knew, I was home again, trying to get some work done before I climbed into bed for the night. The plan was to be in bed by 10 PM, because I need to get back into my routine. Sadly, it is now 10:30 PM, and I am still doing things. Why? I wish I knew. Another crazy narcolepsy quirk is that some of us tend to become MORE awake in the evening hours. Insane!

I am struggling to comprehend how October 1st is tomorrow. I have been teaching for over five weeks already. A piece of me still feels like it is summer, yet another can't think of a time when I did not know my current students. Much of this is "normal" for a school year in general. I just know that my narcolepsy adds bizarre wrinkles to my reality. While I do not have the automatic behavior nearly as often as I did two years ago, I feel like I was close to that today. It scares me that even with a LOT of stimulant in my body that I can still have a day that gives me pause, especially when it comes to driving. I do think that I was safe today, but I was only a notch or two above my "no driving" threshold.

Clearly, I am still in a lull in terms of energy. I also believe that the stress of our first "real exam" in my courses has impacted me. I have a number of nervous students and parents, thus I am working harder. Finally, I know that I am distracted because I am excited for the conference this weekend. How could I not be? An entire weekend of hanging out with other people with narcolepsy? Seriously? It will be amazing. But, I need to stay present with today, not dream about two days from now. I must get my body into bed. NOW!

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!

Starbucks Success

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

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

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

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

Oddly Outpaced

Few things are wilder in my life than the vagaries of narcolepsy. As I said yesterday, I am sure that I am still paying the price for my two weeks of insanity. Still, I had been feeling that I was handling things decently, given the "crash" I was experiencing. Then I got up today, or perhaps more accurately, I struggled upright today. One would assume that after crashing for five days, my energy would begin to improve. Sadly, one would be frighteningly wrong, at least she or he would be this week.

Somehow, resting and doing little last night made my MORE tired today. My head hurt for much of the day, and I felt rushed and overwhelmed. It didn't help that I kept taking small hits all day - computer mix ups, school assignments not quite ready, students struggling on exams, appointments happening "sooner" than I could arrive, problems arising that I felt the need to address. I was more than spent by the time I got my daughter at 4:30 PM. That is when the day truly started to sour. She felt neglected yesterday in the aftermath of her team's big win, mostly by me. And, no matter what I did or didn't do, her perspective is the one that matters in that situation. I tried to discuss it with her on the way home, but might have made the situation worse. We then had more tense moments at home.

My wife's arrival seemed to exacerbate the situation more. I had already used up even my deepest reserves, and she too felt dismissed by me. We managed to talk through some of the issues, but I still need to fight off my own internal attempts to shame and blame myself. My wife has had a long and busy week, and I am definitely struggling with my disease more than I have in the previous few weeks. Toss in our wonderful, but pre-teen daughter, and the season is ripe for a colossal disaster. Thankfully, we all managed to avert such a tragedy, but the potential always seems to simmer below the surface.

It makes me laugh that the ebb and flow of my condition never comes at opportune times. I think narcolepsy wants to keep me humble. My students are on retreat tomorrow. It will be good to have a day that is still "work," but one which I can use to relax and meet with my team to plan out our next few weeks. The pace of the western world is relentless. I wish that was not the case, but I also know that I can only control my own actions. Thus, I will continue to work on accepting only one or two responsibilities. I just need to learn how to say, "No" on a regular basis.

Mindful of Mystery

My goal daily is to live my life in a state of mindfulness. Given the nature of narcolepsy, I work to accept the world as it comes to me, rather than dwelling on missed opportunities or obsessing about impending events. Since I am naturally a worrier and second guesser, the goal is definitely a stretch goal for me. Even so, I am thrilled to report that I have been far more successful, thus far, at living in the moment than I ever believed that I could be. Many moments still fall into my old patterns, but far more do not. I get chills every time I recognize that grounded in the present. The current week has been a perfect example.

I know that I am "off" this week. That said, though, I have made it to work each day and been able to dialogue honestly with my peers and my students. Even cooler is that I have been attentive to my daughter even with a mountain of correcting looming over my head. On Monday I took her to her volleyball game. Our directions were wrong, but we still managed to be the first to arrive. Eventually, the entire team made it. The girls beat the other team soundly, but more importantly, I had a glorious night with my daughter. Last night, we were off to volleyball practice. Some girls missed practice so the coaches and I played against the girls. It totally wiped me out (and I am still feeling the effects today), but during the scrimmage and on the way home, my daughter and I simply chatted. My work load had increased that day, but I didn't care. My daughter was at the center of my world. Finally, we had our last volleyball game (until next week) today. As had been the case all week, my correcting pile grew, but I was far more interested in watching my daughter's game. They did drop the first game, but came back to win the second 27-25. The intensity was phenomenal, and the lead changed at least 14 times during the game. Finally, the girls overwhelmed the other team in the third match. My favorite highlight came on the last point of the game. My daughter's team actually passed the ball so three people touched it. Cooler still was the head's up move by one of my daughter's teammates. This young woman played the ball off of the net and got it over. As the ball dropped to win the match, all of us (kids and parents) clapped and cheered. The best part remained that I focused my energy on my daughter instead of the multitude of unfinished assignments in my school bag.

I have no delusions that every week will go this well. I also know that my daughter might say something else about the last three days. But, as far as I can tell, I have had one of my best string of days, in terms of my ability to remain mindful. The reality is that I can't control the past or the future, but I can learn to appreciate, enjoy and respect the joy and wonder happening in each second throughout the world around me. Doing that can only strengthen my relationship with my daughter and my wife. In fact the person who gets the most out of doing this is I.

Living, Loving, Laughing

Daily, I thank God for the blessings in my life. I need to do that so I don't dwell on the frustrations of my narcolepsy. So much has been given to me that is denied to others (people with narcolepsy and those without it). I have an amazing wife, a wonderful daughter, dear friends, a good job and lots of support. Too often, those simple basics are withheld from others. In the many online narcolepsy forums that I visit, it saddens me when I learn of yet another person with narcolepsy who is neglected by family members, or worse chastened by them for being "lazy." Because of my insane drive that pushed my body well beyond its limits for years, I rarely am confronted about my "lack of energy." Even when I am, it is with a tone of grief, rather than one of disdain. Just today, another colleague asked if I would ever be able to return to full-time teaching. She looked genuinely sad when I said I would not. Even people who support me just can't fathom that this condition doesn't "get better." I will always be TIRED; that is my reality.

My medications do mitigate the fatigue, but nothing can make it go away. My school year has been going significantly better than I can every remember. Thus, my mood is up, and I have a spring in my step. Those who don't fully understand my condition immediately assume that I must be "feeling better." While I am enjoying my job far more than I have in the last few years, I do NOT feel better. I am simply more at peace with feeling rotten. And, that situation is okay. I have a full life. As I stated above, my blessings are overflowing. I just need to get use to the look of pity in peer's eyes when they learn that my narcolepsy is not lessening.

I also need to diminish the guilt I periodically feel when I read or hear the stories of other people with narcolepsy. No two people can ever honestly compare pain, and I do believe that God gives us no more than we can handle. That said, I get so sad when I see what others must endure at the hands of the disease that we share. So many have it far worse than I do - at least it seems that way to me. But, my guilt helps no one. Instead, I try to think of ways that I can be present for them. Often, that is a message or a kind word. Other times, words fail me, leading me to prayer. There is such power in connecting with other people with narcolepsy.

One more great thrill from the last few weeks has been my interactions with other people on the various narcolepsy forums. I know my heart beat quickens when I think of the national conference is only days away. I will be incredible. The weirdest part is knowing that the speakers will be incredible, but I just want to talk to other people with narcolepsy in a face-to-face setting.

I am sincerely grateful for this journey, every step of it. I want to embrace everything that is this world, including my health (highs and lows). Living and loving and laughing are the core priorities of my life. I look forward to seeing how it all turns out in the end.