Travel Tension

On the whole, today has been great, but as was the case on the way down to Tennessee, narcolepsy did choose some choice moments to rear its ugly head. In an attempt to create a smooth departure this morning, we all packed last night. Ironically, that effort paid off for us (those things usually backfire in some way). We were on the road by 6:25 AM - a significant improvement from a week ago Friday (when our 6 AM departure turned into 8 AM). My wife was on edge as we left, but I knew that she was definitely sick still, and her angst quickly passed.

The problem, though, was that due to my wife's illness I needed to drive more than I had on the way down. I took my first driving shift right after we entered Kentucky. I managed to get us passed Lexington, which was over 100 miles of our trip. I drove for nearly an hour and a half. Unfortunately, I found myself in heavier traffic toward the end of that time (no doubt due to passing through Lexington). Still, I handled things well, but I could feel some tension building. My wife definitely gets worried as I begin to fade behind the wheel. Still, I was pleased that I drove that far and helped out that much.

Because it was so early, we continued to push on. My wife drove us into Indiana. We finally stopped for lunch at this great little restaurant in Scottsburg (Jeeves & Company). Our lunch was wonderful, and I took my second dose of amphetamine right after we ate. My wife definitely needed me to drive again. I knew that I was already exhausted, even with the stimulant, but felt I had no other choice. Thus, I got behind the wheel and knew that I would be fine in terms of safety. The problem was that driving would take all of my energy. My wife dozed during some of the time, but she woke up as we began approaching Indianapolis. Like Lexington, traffic began to get dicey as we approached the metropolitan area. Finally, a truck cut into the left lane (at 65 mph) when the car in front of me and I were both moving at 80 mph. Needless to say, I was furious. I then drove through the next 30 to 40 miles in rapid, lane-shifting traffic. I wanted to get us around Indianapolis before switching. But, the speed and my bad mood made my wife more and more anxious.

When we finally reached an exit that would allow us to switch, I was attempting to explain my awful mood to my wife. Sadly, the gas station we wanted to reach was not immediately at the exit, AND the bottom of the ramp was incredibly confusing. I did make the correct decision, but had no way to know that at the time. Because every ounce of energy that I had was going into keeping the car on the road safely, I derided myself for the rotten signage. This only upset my wife more. After the mile had almost passed, we were approaching a different interstate and could not see the gas station. Because I was so far gone, I cut my wife off as she was attempting to "help" me. I plead with her to say nothing and to let me figure out how to find the gas station. Seconds later, I spotted it just passed the other interstate, but she also saw it and chose to let me know where it was. That definitely sent me into a tailspin.

I got us to the station, and we snapped at each other about the situation. We soon reconciled, but as I got out right after the initial exchange, I was literally shaking aas I was pumping the gas. I had nothing left from the driving. In fact, I nearly exploded when the pump failed to print my receipt. Fortunately, my wife had already apologized to me. I managed to walk (or stomp) inside and nicely ask for a copy. I then apologized to my wife and again attempted to explain how hard such a situation is for me. It drives me nuts that my energy is so limited in moments like that. I truly did not have the ability to interact with her (or myself) civilly because I needed all of my mental accuity to keep us safe in the car. That is crazy, but it is also reality.

Fortunately, my wife and I are exceptional at sharing, listening, and forgiving. I know that she meant well, and she knows that I truly did not try to upset her. She also appreciates that I did much more of the driving today. She still did the majority, but I did drive for over 3 hours and handled over 200 of our miles. Narcolepsy will certainly continue to be a bane - in my travels, in my marriage, in my life. But, I must simply continue to accept what it gives me and make the best of each day. Gratefully, we got to our hotel by 3 PM and have had a slow evening to gather strength for tomorrow. We are all excited to get home. I hope that tomorrow goes well and that my narcolepsy lets me have enough strength to drive and to be kind even when the roads are tense.

Internet Interruption

I love that I am constantly learning new things about myself. While a portion of that statement is facetious, I do like that I am open enough to recognize important factors about my mental and physical health. So, we are on vacation. Gatlinburg has been great, but my sinuses has not. I am also furious that my resort DOES offer an internet connection, but for a fee. I realized this after returning from McDonald's on Sunday. My rage only increased when I learned that the resort's internet is provided by Wayport. While Wayport has been around for a while, apparently the company is now owned by AT&T. The irony is that I am supposed to be able to connect to AT&T wifi because of my own internet connection at home. In fact, I used the Wayport connection at McDonald's! I finally caved in and paid for 24 hours on our room connection. I needed to do that.

My health woes have made for a long week, but it has also been hard because I don't do well when I have "unstructured" time. We have done some hiking, gone white water rafting, and visited the Aquarium of the Smokies. Those activities have been awesome. Unfortunately, those things drained me (because I have narcolepsy) and left me sitting around our townhouse at the resort. When I don't have ways to distract myself, I tend to get stuck in my own head. To avoid that I have watched a ridiculous amount of TV. I would have done far more productive things had I had an internet connection, but that was not possible. I also knew that trying to DO other things would be a disaster, since my limited excursions have left me wiped out. That might be the most frustrating aspect of this. This trip is the first long one that we have taken since I have begun to figure out how to live effectively with my narcolepsy. Unfortunately, I was not prepared for it. The lack of the internet connection, coupled with how much two LONG days in the car took out of me, has made it difficult for me to be upbeat. I also know that I am bring down the moods of my wife and my daughter. We are having fun, but my limited participation certainly impacts them.

I am now in hour 30 of a killer sinus headache too. It improves at times, but on the whole, the dull and constant pain in my left temple is getting old (to say the least). I skipped the hike this morning in hopes that I would feel better, but it made no difference. I am also afraid that I will get worse when we spend two days in the car driving home. Hopefully, tomorrow will be a good day. We plan to visit some of the shops on the craft circle - an eight mile loop of various artisans. It should be a blast, but all of us are under the weather. We certainly will not push ourselves, but it is definitely a burden on my wife. She clearly has a cold, but is trying to pick up my slack. I am doing my best to stay positive and engage with my wife and daughter, but there is only so much that my body can give. I will attempt to keep smiling and give everything that I can!

Meandering Moodiness

While today was slightly better than yesterday, I have yet to find any traction this week. That said, I did enjoy my day. My daughter and I continued to enjoy her new Wii game. Animal Crossing is ridiculously silly. You essentially fish, catch bugs, run errands for your neighbors, and dig up fossils. At the same time, it is hilarious. I must admit that the best part is spending time with my daughter. Although we did manage to limit the Wii time, it was still past noon when we "finished." We then went to lunch and took in a movie together. I do believe that things went well, but I still worry that I am not connecting with her enough.

I did manage to do one thing for my wife today. I got groceries, which we desperately needed. At the driving in the afternoon, I was a tad worried about driving again, but I rested for an hour before going shopping. Still, the trip to the store finished me for the night. I was able to let go of my anxiety over the things that I have not even started yet for my meeting in the morning. I think I can get a couple things done when I wake up, but I doubt I will have it all finished. Hopefully, my colleagues will understand and forgive me. I also have an appointment with my sleep doctor tomorrow. I need to pull together some questions for him. The appointment should go fine, but I also wish I had a firmer grasp on my current mental state. I am not sure how well my meds are working, but worry about trying to ask for anonther stimulant. We will see.

This needs to be short tonight because I need to get to sleep. I am painfully aware that my own inability to re-establish any sense of a schedule has been reeking havoc with my entire state of being - mentally, physically, emotionally. The good news is that I still have a week and a half of July. Then, I will get three weeks of August before school starts. That is a tremendous amount of time, but I must start moving in a better direction.

Slow Sunday

Everyone got up late in our house today. As always, I was the first one up - Xyrem in a midnight and 3 AM means I am awake at 8-8:30 am. Today was no different. Of course, the physical exertion of cleaning up last night and the emotional strain of watching my daughter left me completely washed out. My wife finally arose around 10:45, and we got my daughter up at 11:15. I have no doubt that the stress of the play drained both of them. While my daughter loved the entire experience, she expended ridiculous amounts of energy, especially in the last seven days. As Alice, she was literally on the stage every moment of the play, and she gave to the audience for the full 95-100 minutes both nights. For my poor wife, the drain can primarily from insane nervous energy. I have seen my wife stressed about her own presentations, but that is nothing compared to her fretting over our daughter's performance. Since our daughter has definitely been bitten by the performance bug, I am hoping that my wife's anxiety will start to settle down.

Once we got up, we did nothing. I don't think any of us had much motivation today. We did decide to check out Harry Potter and the Half-Blood Prince. We loved the film, but even that trip to the film depleted the minimal energy that any of us had. I got home and felt like collapsing. Thankfully, my wife was able to let go of her own concerns about getting work done. I definitely would have found it more difficult to shut down tonight had my wife tried to push herself to do more work, partly because she has done a bulk of the work that was required from parents for the play. I sincerely hope that I can get back into a better groove in this coming week. I certainly have done a decent job, but I want to find a healthier balance in my work efforts and my exercising.

Although today was incredibly low key, it is wonderful to realize that we were able to have a day like this as a family. Far too often, we have isolated on days like this one. Or, one or two of us will be frenetic, while someone else shuts down. Rather than begrudging each other, we celebrated our fatigue together. As the PWN in the family, I truly appreciate that. As I have said many times, my wife and my daughter are the two people who I still worry about disappointing. Thus, days like today can be dangerous for me. Instead, today was heavenly.

Magical Madness

The hour is late. We just got home from the set strike from my daughter's play. Technically, my wife and I got home just now from set strike; my daughter just got home from the cast party. Today was an insane whirlwind of activity. After having the first full night of Xyrem after three days of half doses, I was slow to rise this morning. I eventually got up and let my wife and daughter sleep. They were both wiped out after the stress and the exultation of yesterday's performance. I played a little on the Wii, did the crossword, and got a couple of things together for my MOONS-MN gathering. Then, when my wife did wake up, we had our weekly "talk time."

I truly enjoy our weekly ritual, but today was extra special because we basically talk about how much we both enjoyed seeing our daughter perform. Soon, though, I needed to get ready for MOONS. I got to the MOONS meeting early because we had to use a different room this time. Park Nicollet Methodist Hospital was doing maintenance work in our usual room. The new spot was tough to find. I did try to put up some signs, but then stood near the entrance to the hospital to make sure people knew where to go. I also wound up going up and down the stairs repeatedly because our usual meeting room is down one floor. Thankfully, I spotted most folks and got them to the room. The afternoon was a blast because we had 11 people there simply sharing their stories and chatting about life with narcolepsy. One of the best things was the age range. We spanned from 21 up to 80. I have high hopes for the direction that MOONS continues to take.

After the meeting broke up, I had to hop back in my car to get home. Traffic was rotten, so I got home at 5:05. Fifteen minutes later we were in the car heading for my daughter's show. My wife and I helped clean the floor before the performance because there was still popcorn crumbs in many spots. Then we did other odd jobs. The performance was even better tonight, and our daughter was radiant yet again. I am thrilled that this was such a good experience for her. Finally, our daughter got to hang out with her friends on the cast, while my wife and I helped get everything in order.

Although it is late, and I will definitely pay for the energy I exerted today, everything was worth it. The time with my wife and the MOONS meeting would have made for an awesome day if only one had happened. But the fact that both took place today, AND I got to see my daughter light up the stage yet again, makes this a day to remember. Crazy and chaotic though it was, the day was glorious.

Properly Proud Papa

I rarely post twice in the same day, but I needed to write this immediately upon returning home. My daughter was amazing. The entire show came together phenomenally well, but my daughter's performance took my breath away. Her acting already has impressed me in the past, but what she did on stage tonight blew my mind. She stayed in character the entire time, even though she is on the stage the entire time. She even created some ad lib when one of the performers was late to the stage. If I had only seen her act tonight, I would be walking on a cloud for weeks. She was that good! And, the fact that the entire cast pulled together as they did tonight is a true testament to the hard work these kids have all put into the show.

What I was completely unprepared for, though, was the stunning beauty of my daughter's voice. I have heard my daughter sing before. I have even heard her sing the songs to this show. But, my daughter apparently has a WHOLE different gear for "performing." She sang with power, grace, style, and energy tonight. Her range is impressive, particularly considering her lack of any formal voice training. Even more impressive, though, was the richness and strength in her tone. She injected tremendous emotion into her words. Her big solos are in the second half of the show, after spending a full hour under the lights speaking and performing non-stop during Act I. The fact that she could still speak is incredible, but her first song in particular literally made people cry it was so touching. And while the lyrics are a small piece of that, far more of the tenderness was due to the way my daughter sang it. I am awed by her.

Birthday of Beauty

Today is my wife's birthday. Hopefully, I have done enough (and will continue to do enough) to let her know how much I adore her. One of my greatest frustrations with narcolepsy is that it often keeps me from doting on my wife to the levels that she deserves. She is truly amazing. Beyond putting up with me, my wife manages to excel at an incredibly difficult job, to provide tremendous care to our daughter, and to maintain our household at levels that dazzle me.

I do hope that other people have been able to marry (or to be partners) with their best friend. My wife is an amazing blessing to me. She supported me throughout the awful journey that eventually led to my diagnosis, and she continued to keep my spirits up when I struggled to find the right meds. But, beyond those things, my wife provides me (and our daughter and the world) positive energy on a daily basis. She is quick to laugh and has a glorious sense of humor. She can even been childishly silly, which I love because I can too!

Yet, her magnificent intelligent regularly awes the doctors in the Department of Medicine at the University of Minnesota. My wife edits articles and grant proposals, particularly high level NIH grants. And, she is exceptional at what she does. Every physician, or other professor, who works with her raves about her talent as a writer and editor. My wife even has two published books. While multiple authors worked on the books, my wife did a vast majority of the "final" writing. The first book explored how to create a research productive department, while the second delves into effective mentoring.

The most amazing thing, though, is that my wife's great talent has nothing to do with her brilliance. Simply put, my wife is the kindest, sweetest, and most earnest person I have ever known. She goes out of her way to help others. She is also loyal to a fault. In fact, she is so loyal that she will choose honesty over self-preservation. She calls out injustice and dishonesty even when she knows that it may cost her social status. My wife exudes grace and class.

In the end, though, my wife is a person who deserves far more than the world gives her. I wish that my narcolepsy did not make it so difficult for me. I would love to shower her with gifts and affection. She deserves to be placed upon a pedestal. While I know I can't give her much, I will hold her tonight and whisper sweetly in her ear. One thing I know, simply letting my wife know how much she is appreciated will mean the world to her because she is a saint!

Relaxed Reminiscing

I had an excellent day today. I wish I could say that I got done numerous tasks, or that I felt wide awake for the first time in years, but my definition of "excellent" is far more mundane these days. I did make progress on a few of the things weighing me down before my Friday ended, but that kept me up until nearly midnight. While that might have made for a rotten Saturday, the opposite happened.

I slept late (for me) and got up at 7:30 am. My wife and I had our weekly "talk time." It is always wonderful, but today was even better because we simply let ourselves enjoy the time together. We both got a chance to share some recent insights and passions. It was sweet, quiet, and fun, even watching the health care PR insider who was on Bill Moyers' Journal last night. After the time with her, I had a fun and exciting meeting with some folks from Narcolepsy Network. These folks are fantastic because they make the forums (and website) happen. Although I get support in many places, the people who I work with to moderate the Narcolepsy Network forums are some of the best people that I know - and they all have narcolepsy too. It is astounding to see the incredible work that they do. In fact, the new look of the forums (literally updated within the last two weeks) has brought in a decent number of new folks. Certainly, the Narcolepsy Network is far more than the forums (particularly if you become a member), but having a diverse way to connect to other PWNs is massively important. Our online meeting took two hours because we have such a good time interacting - even in a "chat."

The best part of my day was yet to come, though. My wife and I headed out to get our daughter. She was at an overnight birthday party on a lake. They even slept out in tents. Even the car ride was a hoot. My wife and I travel extremely well with each other. Once we added our daughter to the mix we headed from a spot north of the Twin Cities metro area to a suburb southwest of it. While that might seem awful, the traffic was relatively light - a huge plus. We were on our way to see some of my high school friends, particularly a friend who has been living in Great Britian for the past 12+ years.

The party was at his dad's house. The home and neighborhood are gorgeous, and the numerous children loved the pool in the backyard and the large game room in the finished basement. While ages ranged from 5 to 12, there were enough boys and girls at each range that everyone felt connected. The kids managed to keep themselves entertained, allowing the adults to interact as well. Even though it has been 23 years since we graduated from high school, these three friends of mine remain dear to me (and to my wife). While I do not see any of them as frequently as I would like, we always manage to pick up where we left off. It is also fun to reflect on the past and to learn about new adventures and activities.

Enhancing the entire afternoon, the weather was literally perfect. I often joke that many Minnesotans live in this state because we get three or four perfect days every summer. The sun shine was glorious, and a light breeze made the temperature, which hovered right at 80 degrees Fahrenheit, exquisite. Plus, we had fantastic food! My friend's dad made pulled pork for us, and my wife had homemade bruschetta and an amazing black raspberry cobbler. Both were a huge hit. Perhaps the best thing, though, was the chance to be present on this incredible day with a multitude of people who are good and decent. I simply sat around and chatted with a group of people who mean the world to me. The whole day reminded me that I am truly blessed. Narcolepsy drives me crazy, but it can't take a day like this from me. It thrilled me that I was not fretting about my "undone" tasks. Rather, I placed myself firmly in each and every moment of the day.

Delightful Date

Occasionally, my wife and I find time to go on a date. Sadly, such an event is frighteningly rare. We did manage to go on a date today, though. It was wonderful! My only frustration is that going out to lunch and seeing a movie wiped me out. Hopefully, we can still have some snuggling and romance tonight. Nonetheless, the chance to let everything else go and to get away with each other was glorious.

Our daughter headed off to a friend's lake cabin today. Thus, we have the house to ourselves. I made the date suggestion last night when we knew that we would be childless for most of today. My wife jumped at the idea immediately. We even handled the dining choice well. Initially, I tried to wrack my brain for some place fun to eat near the theater, but narcolepsy does quite a number on memory and decision-making. As a result, we decided to drive toward the theater and then explore for a place to eat. The town preceding the movie theater is North Saint Paul. We eventually discovered downtown in North Saint Paul. That alone might have been worth the trip. Even though the city is technically an "inner ring suburb," the place felt like the main drag of any out state town in Minnesota. It was wonderful!

We decided to eat at Cindy Jean's. There were a few other choices, but the Legion Hall looked iffy and the bars were not the scene we wanted today. Cindy Jean's was a riot. It has three tables and funky decor. There is a huge flat screen TV and a Wii. In fact, Cindy Jean's apparently hosts regular Wii tournaments. The sandwiches were fantastic, and we thoroughly enjoyed the fun meal that we had there. We did feel bad for the other couple eating there. They had no cash, and Cindy Jean's does not take plastic. Thus, the poor guy went looking for a cash machine. It sounded like he had to pay a bank to cash his check. And, he was gone for 20 minutes.

We then headed for the theater. We saw Sam Mendes' new film Away We Go. It stars Maya Rudolph and John Krasinski, and it is fantastic. My wife had seen some reviews that had raved about the film. It is beautifully shot, and the main characters definitely reminded us of each other. Krasinski and Rudolph work well together, and their characters make an odd, but well-matched couple (which is part of the reason we both identified with them - my wife is definitely the yin to my yang). As much as I enjoyed the film, I think the best part might have been reflecting on the film with my wife as we drove home. Nothing is more thrilling to me than getting a chance to be with my amazing wife.

Perhaps what made this day most special is that Monday (June 29) was our 18th anniversary. We did not have time to celebrate in any meaningful way. We definitely acknowledged the event, but having this sweet and simple date today was a perfect celebration for us (and of us). I adore my wife. She is the rock of our family. She is also the most wonderful, intelligent, gorgeous, exciting, sexy, sweet, gentle, driven, and gifted woman that I have ever met. I am blessed to be her husband. I know that I would not be handling my narcolepsy nearly as well without her constant love and support. Thankfully, our relationship goes stronger and deeper with each passing moment and every passing day.

Sad and Surreal

Somehow, it is still May. Although I have not written for weeks, it feels like it has been a year. While I know that I have managed life, work, home, and health reasonably well, I am frustrated that I have not found time for me. I need to blog. I need to exercise. I need to practice yoga. Thankfully, summer is literally around the corner. My primary personal goal is to set clear patterns for those three things for me.

Even though I have coped with my narcolepsy well, many moments overwhelm me. One happened yesterday. I left home at 7:20 AM, and other than a brief 45 minute stop for dinner, I did not return until 10 PM. In the midst of it, I honestly worried that I would have a sleep attack. Gratefully, everything went well, and I found a second wind.

Today was a radically different situation. Even though I had Monday off, I found myself stunned this morning when I remember that today was Thursday. I honestly felt like Tuesday and Wednesday last for weeks. Yet, today was the longest day yet. Much of the morning went well, but in my afternoon class, I led a discussion during which MANY of my boys attempted to fault a female character in a novel for a rape. I was and am aghast. Although the group has certainly had moments of sheer male stupidity, this horrific scene was completely off my radar.

We are reading Speak by Laurie Halse Anderson. The book is tremendous, and most students can't put it down. The discussion began with some wonderfully insightful comments, but a boy in the class who has often made short-sighted comments then offered that the protagonist was at fault for her rape. Assuming that his peers would immediately reject his comment, I called on two other boys. Both of them agreed with the first. The ensuing discussion entailed young women respectfully and intelligently refuting the lunacy that these boys were spewing, but the boys chose to ignore everything that the young women offered. I know that I handled the situation as well as I could, but I regret that I did not simply reject the initial comments. Unfortunately, I all too often try to be "fair." Since my own biases tend toward feminism, I refrained from shutting down this boy. Hoping that the boys would "learn" from the discussion, I proceeded to allow tremendous pain to be inflicted on the young women in the room.

When class ended the boys strolled out the door without a care in the world. Many of our young women were reeling from the boys' remarks. One broke down immediately. Two others spent 15 minutes in dialogue with my co-teachers and me. Three more wrote lengthy emails upon arriving at home. I highly doubt that the boys even pondered the class period for more than 10 seconds. Thus, in an attempt to "help" the boys, I subjected young women to tremendous pain. That is male privilege in its most sinister forms.

Thus, my co-teachers and I will adjust our schedule for tomorrow. Instead of playing our trivia and knowledge game, we will separate into gender specific groups. Hopefully, the young women can be reaffirmed by the testoterone-free period. The boys, on the other hand, should be interesting. I definitely think that those boys need to hear in no uncertain terms that rape is an evil crime and that a rape is NEVER the fault of the victim. It should be interesting.

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.

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.

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.

Lovely Ladies

Spending time at the Minnesota State Fair today reminded me that nothing is more wonderful than time with my wife and daughter. They are both incredible. I adore them, even when they are driving me nuts. The coolest thing is that my daughter is truly coming into her own. One of the buildings that we toured was the Eco Adventure. It promotes green products, alternative fuels, recycling, local and organic food. My daughter is the one who wanted to start there. She also was genuinely interested in what she was seeing. My wife also kept finding other things that excited her. We are going to have exterior work done on our house in the next few days and are having James Hardy siding put on. It is actually an eco-friendly product that uses recycled wood fiber and cement. Even cooler, though, is that we got even more ideas at the Eco Building for the things we might do next summer.

After our green ideas started to settle, we headed to the Fine Arts building. We split up, but the building is small enough that we ran into each other at times. I know my wife loves art, but it was glorious to watch my daughter process pieces. She does tons of art at home, and I could see her processing what each piece had in it. We had an amazing discussion after we were all done. All three of us had pieces that we liked and could articulate why. I am so blessed to live with such brilliant women.

Our next stop was the Education building. I thought nothing could top the Fine Arts building, but I was wrong. While a number of Minnesota colleges have booths in the Education building, the surprise was the vast amount of student work from young men and women across Minnesota. Some of it came from my daughter's school. As we look at the various art pieces, woodworking items, science projects, reports and creative writing pieces, I could see my daughter's brain spinning with ideas. She has incredible talent in a plethora of areas. Her hunger to create radiated from her as we moved through the building. I have the feeling that some art items and creative pieces may be on their way to next year's Great Minnesota Get Together.

Perhaps the funniest thing in the entire day, though, was watching both my wife and daughter plan their food menu. Both love to have fun with food. Plus, we bought the coupon book so they could get "deals" at a number of booths. Thus, we purchased food from some new places and both of them relished every new dish. They continued their odyssey later in the day. We came home for a time, and then I stayed. Their return not only involved more food fun, but they also watched the talent show for a second year in a row. Thus, they had tons of stories for me the next day. It was adorable to watch them both explode with laughter when they were describing a particular act - be it good or bad.

Many things in my life are incredible, but nothing surpasses these two amazing women. My wife is truly the best writer and editor I know. She is a rare commodity - a talented editor/writer AND a scientist. As a result she is an indispensable asset for the medical school that employees her. In fact she is moving into a new position and is finally being compensated at a level that reflects her immense talent. My daughter dazzles me daily. She creates gorgeous pieces of art, writes effortless pieces of poetry, teaches herself songs on our keyboard, creates amazing pieces on Garage Band AND loves to play. She reads avidly, and she throws herself into games on her DS and fun activities online. I can't wait to see where her journey takes her.

Narcolepsy has taken much from me, but I know that without it, I easily could have missed the best things in my life. This condition has forced me to recognize what is truly important to me. It has also slowed me to the point that I am able to appreciate the miracles around me every day. No miracles are most obvious than my stunning wife and my blossoming daughter. I am a lucky man.

Dream Day

Occasionally I manage to realize that life is good. Luckily, I have a wife and daughter who make even my worst days with narcolepsy worth every second. Today definitely was a day worth remembering. Not only did I manage to get somethings done around the house and for my teaching, but also I enjoyed wonderful moments with my wife and my daughter. More than anything, I want to learn how to cherish these moments on hold onto them for days when things are far less wonderful.

The "day" actually started last night. My wife and I had a wonderful evening together and simply got the chance to appreciate one another. When "today" officially started, I just up and didn't feel too run down from ultimate last night (although I am a tad worried about the extra "congestion" today). I then had a good morning and got some work done. My daughter and I then headed off to a movie.

We saw Mamma Mia - it is fantastic!!!!! But, even better than the movie (better than the ABBA music, even) was the fact that I was spending time with my daughter. We had a great time laughing even before the film started. We both noticed the dearth of men in the theater. I was one of perhaps five men in attendance - I think there were seventy plus people in the theater. My daughter found this hysterical. Once the movie began, she obviously enjoyed it and I found it riotously funny. Seriously, they took ABBA songs and built a story around them - what could be funnier than that!?! Amanda Seyfried and Meryl Streep are incredible, and the entire supporting cast is amazing. I LOVE that Stellan Skarsgard is in the film, and Pierce Brosnan and Colin Firth completely cracked me up. I can't wait to see it again.

Still, the best moments simply involved my daughter and me. I have a tendency to laugh quite loudly, so one can imagine that I was a tad noisy. My daughter chose to periodically cover my mouth to deaden the noise. Later, she observed that it was good my sister was not there. Her aunt tends to laugh louder and harder than me, so the poor girl would have been even more embarrassed. I also love to watch the entire credits, and my daughter enjoys it too (plus, there was still ABBA music this time). As a result, I got the chance to point out to her that the entire film was dominated by women - director, producer, writer, etc. I love that she can see that since too often film remains horribly over dominated by men.

We then went to a late lunch. That was better than the movie. We got a chance to talk and share. We chatted about the movie, plans for the coming weeks, school, her friends, everything. I pray that she and I can continue to connect. I want her to find her own path in the world, but I also want her to know that I will always love her and support her. I also hope that I can model behaviors that will help her cope with life's hardships. My wife said something cool the other day. Perhaps part of the reason I have narcolepsy is to slow down enough and find balance enough that I can help my daughter learn how to cope with the curve balls of the human condition. It is an incredibly cool way to look at things, rather than my ongoing fear that I have cursed my daughter with narcolepsy (both having to live with me and passing it to her genetically). Those fears are things I can't control, but I certainly have a say in how I interact with her and deal with my struggles.

After our lunch, we wandered in a book store for a while and then headed home. She needed to get ready to go to a friend's house for an overnight. We even stopped for some ice cream on the way home. I managed to get some yard work done and then settled in to relax. She got ready and then headed off with her friend's family. My daughter is amazing and I feel blessed to have her in my life. I see so much of myself in her, good and bad, but want to see just her - not reflections of me. She has such vest for life. I pray she never loses that. I do worry that she may be narcoleptic. She definitely has some weird health things already, not the least of which is horrific sinuses. If she does wind up testing positive for narcolepsy some day, I hope that she has learned from me good ways to live with it.

Hemispheric Wholeness (Holistically)

My Saturday was a nightmare, with the exception of two things. First, a dear friend sent me an amazing video clip to watch, which helped to save the weekend. Second, I spent Saturday evening (and most of Sunday) with my amazing wife, celebrating her birthday (and our anniversary) and reveling in her beauty and joy. What amazes me most, though, is that I easily could have thrown all of the good parts of Saturday right out of the window. I came home tired and frustrated; then, I rallied!

The day began when I awoke feeling worse than I had on Friday night - never a good sign. My bowels were screaming (a lovely treat that continued throughout the day). I also had no energy - even getting up to feed the cats wiped me out. Immediately, I started in on myself mentally. I had told my ultimate captains that I would definitely be at Saturday's practice. I had even blown off a friend's move to make sure that I could go. But, I also knew that, the way I was feeling, two hours (or more) of practice would destroy me. My wife and I had plans for the evening to celebrate our 17th anniversary and her 40th birthday. I wrestled with the guilt and the practicality and the irrationality and the frustration that plague me constantly, particularly when I am completely run down.

Gratefully, my wife saw this and asked me if I was beating myself up over ultimate. We had a good conversation, and I made the wise decision to skip practice. Everything else aside, playing ultimate would have been a terrible decision just for my physical health. Not only are my knees bothering me a great deal again, but the aforementioned bowel issues would have made me grossly uncomfortable at the fields. I even managed to pass more than gas in a few of my "better" moments in the morning.

Having made that first wise, but rotten, decision, I then tried to do something. I picked up a few things, started some laundry, and even got most of our door handles fixed. I also made myself late for the one other event I had scheduled. The MOONS group was planning on meeting on Saturday. The gathering was taking place in Maple Grove, MN at a coffee shop. I arrived 20 minutes late, but could find no one there that I remembered from the large meeting I had attended at the end of May. In variably I was angry at myself for being late. I also worried that I might be at the wrong coffee shop. As much as I wanted to be mad at others in the event that the meeting had been canceled or that not many people showed up so the first arrivals went home, most of my ire was reserved for me alone. I did attempt to log into my computer to see if I had missed a message if I got the info wrong, but I would have had to pay for access. I was able to discover that a second branch of the coffee shop was elsewhere in Maple Grove. I had no idea if it was on the correct street, though.

Thus, around 1:30 (ten+ minutes after my arrival), I set off down the street on which I knew the coffee shop was supposed to be. As far as I could tell there were no other branches on the street. At that point, I figured that I should cut my losses. I planned to stop at a few stores and then head home so I could enjoy my time with my wife. My disappointment and guilt had not abated, but I was proud of myself for still being productive, even as I beat myself up. Before stopping, though, I had to get gas. My warning light had been on since I had left home, and I had driven quite a ways.

Thinking I was getting away from the shopping areas, I made a turn at a light. Unfortunately, that turn took me into one of the primary shopping areas in Maple Grove. The entire region I was in was a store mecca, but this particular grouping seemed to be the major host of "Sidewalk Sale Days." No matter were I went, I could not get out of the lot. After forty minutes, I eventually got out. My car had been running the entire time, and I had regularly thought I had found a route out only to realize it was another dead end. I am quite sure that the only thing that kept me from ramming something with my car was a constant stream of self-talk. Much of it was me trying to calm myself, but it was also reprimands reminding me of the damage that I would do. Needless to say, I was immensely relief to escape that literal, personal hell.

I then called my wife so she could know things were not going well. I was already calming myself, heading back to the stores I wanted to visit, because I had seen gas pumps there as I was leaving (but figured it would be harder to get to those than find others - ha!). I was just finishing the call when I pulled into the pumps...only to realize that CostCo only lets their members use them. On the verge of tears, I told my wife that I would call my sister (who lives in Maple Grove) if I ran out of gas. I honestly thought I might, as much as I am prone to hyperbole. Thankfully, I found gas right away. I even had a gallon to spare - gotta love Hondas! I then did the shopping that I wanted and headed home. Even at home, knowing that I needed to get ready, I tried to do one last door knob. Not only did it not work, but I also managed to cut open a finger.

So, I feel horrid, have had an awful day and completely blame myself for all of it. I am supposed to go to dinner and then a hotel with my wife to celebrate her birthday and our anniversary. Part of me knew the entire situation was doomed. But, I rallied. I was still out of sorts in the car, but did my best to be pleasant with my wife. By the time we got to the restaurant my mood was decent. And, as our food arrived, I was genuinely enjoying myself. We had a phenomenal meal, bought some cool furniture for our home and had an amazing stay at the hotel. I was proud of myself, but I also recognized that I found a valuable lesson in my Saturday.

A kind friend shared a video with me on Saturday. I actually watched it before heading out on my disastrous trip to Maple Grove. The video can be found at TED Ideas Worth Spreading. TED stands for Technology, Entertainment, Design. In 1984 a conference was started to bring people from these areas together. Now, it is much more with science, education, the arts and business also being represented. Basically, the conference is help each year (along with many other activities) to allow great thinkers from all of these fields to share an eighteen minute story. Many of the talks are now available online.

The video my friend shared is Dr. Jill Bolte Taylor, a brain scientist, telling the story of her own stroke. The direct link to it is http://www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html. The story itself is breath-taking (and funny and sad and wonderful), but her insight from the experience stunned me. She nearly died, but what she found so remarkable is that the stroke afforded her the opportunity to realize that she could "live" in either her right brain (where everything is beautiful and we are all connected internally and externally) or in her left brain (where everything is ordered and tasked and categorized). She chooses the right side. Now, Dr. Taylor is not saying that the left side is bad, but she raises the issue that the left side is the one that most of us choose.

Having heard that message on Saturday, I then went out and lived completely in the left side of my brain. There were things to do, tasks to complete. I wasn't getting them done and that was bad. My left side pushed harder and I continued to fail. My left side knew I wouldn't and couldn't measure up so it drove into me as harder as it could. I nearly broke. Coming home, though, and knowing that my wife is why I had wanted things to go the way I had planned them (in my left brain), helped me to let go of it. I am not fully sure how I did it, but I handed power over to my right brain. I opened myself to everything around me that is beautiful. I let myself, even after the morning and afternoon insanity, appreciate everything that was good. I am glad I didn't have to have a stroke to see that.

The other important realization that came out of Saturday's near nightmare is that my wife is the most important person in my life. As she pointed out to me as we awoke in each other's arms on Sunday - "We are soul mates." While the two of us have radically different personalities, we come together beautifully. I don't want to overwhelm her with the stress of my condition, but I also can't hold myself back from her. NOTHING makes my world brighter and more complete than spending time with my wife. She ignites joy inside me everything we connect. I am grateful that I didn't blow our evening on Saturday - partly because it would have ruined her birthday, but also because I learned again how vital she is to my well-being.

I am not foolish enough to think that I will not be in my left brain often. That is part of who I am. But, I will be making a much more concerted effort to allow my right brain plenty of time to revel in the connections that I have to everyone and everything around me. I also know that my wife can't be the sole source of my support, but I do need to let her fill the primary role far more often than I have been letting her. I need to open myself, in general, to all of those people around me who do want to love me and help me. The finally irony of the video and the way things turned out this weekend is that I have been teaching my Ender and Bean course for a week. One of the major themes in the Ender books is the philotic connection that exists between people (and atoms and cells and everything). As I watched Dr. Taylor speak about the right brain, I thought - "that's the philotic connection!" Then, on Sunday morning when I realized that my right brain had taken over and saved the night, I knew that much of the love and joy I experience when I am present with my wife is also the philotic connection. Suddenly, my Orson Scott Card class didn't feel as much like SciFi any more. I may still wind up showing the class the Dr. Taylor video, but none the less, I now feel like I have a much better insight into my own class due to this weekend.

Missing Mother Nature

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

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

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

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

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

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

Just Another Wacky Day

I had thought my next blog would be about the amazing experience of being in my men's group. I also considered a blog entry on the importance of therapy. A third topic choice was the vitality of friendship and its importance in my life. Nowhere in my planned list of entries was "completely insane day centered on your wife's health issues." And yet, here we are!

My wife is amazing. She truly stuns me on a daily basis. Not only does she manage to love me unconditionally, even with the gloom of narcolepsy hanging over me, but also she daily proves that nothing rivals the affection of a mother for her child. Our daughter goes non-stop and taxes both my and my wife's reserves. Since I don't have much, my wife bears the brunt of the parenting, and virtually every other home life responsibility. Rather than becoming feed up with our child, my wife's enthusiasm for our not so little girl grows with each challenge and demand. It is astounding.

Beyond that, the love of my life is also a phenomenal editor and writer. Her work at the University of Minnesota Medical School has already garnered her a tremendous reputation. Recently, she facilitated a four session workshop on grant writing. Every week she had 50 doctors and researchers engaged for an hour and a half - about writing! She is even better one-on-one and rarely does someone walk away dissatisfied from working with her. Her professionalism and dedication are the stuff of legend among her peers.

Given all of that, it is unbelievable that we spent the afternoon running around dealing with her health issues rather than mine. She is the strong one; I am the ill one. Yet, she has been struggling for weeks with fatigue and stress issues. We have even discussed the possibility that she might have a sleep disorder. Talk about irony! Today, though, went well beyond speculation. Periodically, my wife has had severe abdominal pain. The working theory has been that she experiences ovarian cysts in those episodes. She had a situation last week and even got to discuss it with her other concerns during an appointment with her nurse practitioner. They did a number of tests, and many have already come back normal.

Then, today, my wife called me right before Noon. I was in the middle of class and could not call her until the class ended. When we finally had the chance to talk, she told me that she was experiencing the pain again and was unsure if she could drive. She did manage to get home. I then headed home to get her and brought her to her clinic. After getting our daughter at school and canceling my own appointment, we returned to the clinic to find my wife still waiting and in pain. She finally headed back and was there for an hour. An X-Ray showed nothing significant, and my wife got some Mira-lax in hopes that would help. We still needed to get her to the hospital, though, for a pelvic ultrasound. We don't have those results yet, but my wife is convinced they will be normal too.

She headed to bed as soon as we got home. I must admit that I am scared. My wife's dad has had some major health issues - surviving colon cancer, sleep apnea, type II diabetes. At one level I am sure that she is fine, but it also frightens me that someone as tough and driven as my wife could be incapacitated in this way. The reality is that NOTHING has ever slowed her down when she needs to get things done. But, whatever this is, it has stopped her in her tracks. It is also eating at her that she feels so limited. The quirk is that she keeps checking with me to make sure that I don't think she is being lazy. It is almost laughable that she would feel that way. For seven years, I have barely been able to function due to mysterious and strange health issues, yet she worries that I will think she is weak after a day of pain. Of course, I am complete empathy. Unknown medical problems are horribly frustrating. My own issues have (and sometimes still do) driven me bonkers. Given the way our culture treats illness, it is no wonder that most of us beat ourselves up for getting sick. Being a drain is bad, thus we must be bad if we are sick. How warped is that thinking? Yet, we all do it.

I desperately hope that nothing is seriously wrong with my wife. I don't know how we will weather the reality of two limited adults in this house. But, if something is deeply wrong, I honestly hope we can find it soon so my wife does not have to face the medical nightmare that I experienced, moving from specialist to specialist, never getting a clear answer. The most irrational moments that I have are the ones where I convince myself that I have somehow given my wife this illness. So many of her symptoms mirror my early ones. Of course, that could just be me making myself the center of attention, rather than providing my wife the attention and care that she deserves. Please keep her and our whole family in your thoughts. Thanks!

All My Heroes are Women

Maybe it is carryover from Mother's Day, but it struck me today that a majority of my heroes right now are women. I know I am not the only person who would fall into this category, but it still strikes me as unusual because "hero" is often reserved as a term for brawny males in tight costumes. I also find it strange that my heroes are constant elements of my daily life. These women that impress me and inspire me are my mom, my sister, my daughter and my wife.

Clearly, seeing my mom yesterday sparked this train of thought. She has been wrestling for years with the strain of needing to leave the state, while still desiring a close proximity to my sister and my family. While mom would be someone special to me no matter what (she managed to birth me and my giant head after all), yesterday touched me deeply. After all this time, my mom is nearly ready to leave behind the world she has known for the past thirty-five years. I share a number of traits with my mom, but one of the most glaring is our aversion to change. Neither of us likes the idea of uprooting everything. I know that this idea of leaving Minnesota scares her, but it was amazing to hear her own that. She is clearly still struggling, but she is pushing herself forward because she knows it is the right thing to do. I also know that she worries, as I too often do, what others might be thinking about her. Even in that, she has rallied her spirits and is preparing herself to do this frightening thing. I am so proud of her and hope that I can continue to muster that level of strength to face my own struggles.

Certainly as impressive is my sister. She has been a rock for mom throughout all of the difficulty of the past few years. My sister lives closer to my mom, but has done far more than her share in being present for mom. While I can use my health and own struggle as an excuse, the reality is that my sister is a much stronger person than I am. She and my mom have clashed horribly at times, but my sister never gives up on my mom. For a long time, my similarities to my mother kept me away from the entire situation because I could not separate my own issues from those of my mother. While I am more like mom, my sister certainly has plenty of my mom's quirks too. Yet, she has constantly been able to rise above those and help our mother in countless ways. That depth of character awes me. I only hope that I can eventually grow up and be like my little sister.

I have a small part of me that wishes my third hero would never grow up, but I know that all young girls must someday become amazing women. My daughter amazes me. She exudes life and excitement every moment of every day. She loves to make music - on her trombone, on the keyboard, in her head, with her words. The amazing part is that she looks for new ways to challenge herself. My daughter loves to learn for the sake of gaining knowledge. She reads like mad and loves almost every book that she reads. Even if she doesn't like the book, she works to finish and appreciates the story for what it is. She is also an amazing poet. At 11 she has more linguistic skill than I have mustered in my entire life. The most amazing thing about her, though, is her tolerance for her grumpy, sleepy dad. Because of her high energy and my wife's busy work schedule, my daughter tends to bear the brunt of my ill will. While she certainly does some improper things at times, no one deserves to be the constant target of a grouchy narcoleptic. Yet, she not only handles it well, but she also forgives me even when I am a complete jerk. I regularly pray to have the patience and poise of my daughter.

In fact the only person who dazzles me more than my daughter is my wife. If anyone has ever earned a trip straight to the pearly gates, it is the incredible woman who has put up with me for almost 17 years of marriage and over 21 years since our first kiss. My wife is the best writer and editor I have ever known. She daily helps doctors and professors improve grants and papers for publication. Even more impressive is her ability to help others learn how to become better at the craft of writing. But, beyond all of her professional accomplishments, she is an unbelievable mother, wife, daughter, sister and friend. She gives love constantly and manages to maintain a crazed household in spite of her narcoleptic husband. I adore her and wish I could find her drive and compassion within myself, simply so I could give her as much love as she gives me.

I am blessed to know my heroes. I get the chance to bask in their amazing talents every single day. I hope I can continue to grow in both my appreciation of these stunning women and my emulation of them. I am lucky to have them in my life. I am even luckier to know that I can continue to draw inspiration from them as I continue my own journey in living with narcolepsy.

Empathy

I belong to a few online narcolepsy support groups. They have become an important part of my life within the short month I have known them. I am even more excited to attend my first MOONS meeting on May 31. Having the chance to connect with other narcoleptics is amazing. My sense of isolation has become overwhelming at times. While no one, not even another narcoleptic, can understand what I am experiencing, I relish the chance to interact with people who certainly can relate.

Of course, one need not have narcolepsy to understand hardship. The more I struggle through my condition, the more fully I come to realize that it is impossible to compare (or judge) pain and stress. My journey has been horrific at times, but has also brought me so many rewards and so much grace. I doubt anyone would chose my path, but is it any worse than those that others tread? How could I say that this experience is any harder or easier than yours? I can't. No one can. I live in this insane culture where we are driven to WIN, at all costs - even if it is suffering. Think how often in the United States people play the game of "my life is worse." So many of us want to dwell on our own sorrows simply to prove that we deserve the sympathy of those around us.

Maybe it is the frustration of knowing that my narcolepsy won't go away, or maybe it is the blessing of knowing that my narcolepsy won't go away, but I want out of the "my life is worse" game. Instead, I want to use my own struggle to build empathy with each person I encounter. Rather than spiralling in on my setbacks, I want to reach out to others and acknowledge their grief. I can't understand it, but by using my own difficulties as a lens, I can at least glimpse another's woundedness. In doing that we both can heal. We can validate each other and feel less loneliness. I am not talking about martyring myself and denying my suffering. Nor do I mean that what I have gone through is the same.

The point is I know what it is like to hurt. By recognizing, instead of challenging or questioning, someone else's gashes, I can help that person to be more whole. When I explain narcolepsy to friends, they often wonder how I can survive with it. For me it is not an option - I just do. My surprise is that I am more awed by their struggles. A student of mine once remarked that he, "would have just given up" if he faced the challenges that I have. But, that same student has overcome a litany of obstacles in four years transforming from a student highly likely to flunk out into one who will head off to a four year college and a vibrant future. I have a friend who had both kidneys fail before age 21. Another friend has faced tremendous depression and is finally getting help. A third battles personal demons that can only be controlled by intensive medication, yet that friend still fills the world with joy and art.

The list could go on and on. Are any of those people better or worse off than I? Who knows! Pain and suffering can't be judged. All I can know is my own life. Certainly, I can wallow in the delusion that no one has ever faced anything as awful as narcolepsy, at least not the way it impacts me. Or, I can deny that my narcolepsy has any impact at all on the way I move through this world, scoffing at those who would use illness as an excuse. Fortunately, I choose to accept each day for what it is. I am narcoleptic, and I struggle. That experience, though, affords me the opportunity to be grateful for all that I do have. I also can use my condition as a window into the struggles of those around me. When we can be with one another and simply recognize of basic humanness, then we all have a shot at starting to heal.