Category Archives: Friends

Whirlwind Week

It is Thursday evening, and my week feels like it has flown by. Monday, we had no students at school, but needed to be there for an in-service and department meetings. The in-service was amazing. Uncommon Seminars came to lead us in activities designed to help us in our communications with each other. Eventually, our school is hoping to develop a system of teacher, staff, and student support that would resemble the house systems at other schools. To do that, though, our faculty and staff need to learn how to dialogue far more honestly with each other. The folks from Uncommon Seminars helped us take the first steps on that path (and we had a blast doing it). Then, we all got to go to three hours of intense department meetings. Needless to say, I was exhausted by the end of the day, but I still needed to get my daughter home from her school, and I need to get my MacBook Pro into the Genius Bar. Tuesday and Wednesday were crazy because we are beginning research essays on human rights topics. So, between bombarding our students with information and trying to help fourteen and fifteen year old students sort through horrific global issues, I found myself leaving school both days with little to no energy. But, neither day ended with the close of school. On Tuesday, my parents, my wife, and I attended our daughter’s band performance with the combined advanced band and jazz band. Students from various grade schools come together each year to rehearse for weeks to perform this concert. It was great, and I love that my parents got to see her perform, but my brain was turning to mush before we ever got to the concert. Then, on Wednesday evening, all of us had dinner together. The food was fantastic (we ate at The Happy Gnome in Saint Paul), but again, after repeated full days, a three hour dinner with my family does not leave me much room for recovery. Today, I had to get to school far earlier than normal because I was assisting with the young men’s retreat for our eleventh graders. The event was outstanding, but it was another full day. Plus, I had to grade students making up presentations when I got back to school after the retreat. At one level, I am thrilled that tomorrow is Friday, but I also find myself shocked that I still have one more day to go before the week ends. I will get through tomorrow; I just do not know where I will find the energy to do it.

Making things even tougher are a number of sad (and infuriating) pieces of news in my life. Topping the list, my father-in-law is in the hospital again. He has been battling a number of medical issues for years, with the worst three being sleep apnea, type II diabetes, and Parkinson’s disease. But recently, things have gotten worse,  and he is having problems with strange infections that are requiring hospitalization. Beyond that, three different colleagues at work have gotten serious medical things happening. One woman is being placed on extreme bed rest for her pregnancy. Everything should be fine, but still, for a woman to be on bed rest at 31 weeks is a tough situation. Then, another female colleague is having a hysterectomy. And, a third colleague is facing a spinal tumor that is most likely not cancerous, but may eventual confine her to a wheelchair. Far down the scale of serious (yet still frustrating), a friend at work who I am hoping to teach with again is having ridiculous pressure put on her to rush some significant life choices. And, I just learned through the REM Runner blog that the Supreme Court has agreed to hear a case on “ministerial exception” involving a Lutheran school that fired a teacher with narcolepsy in 2005. The school is asking the Supreme Court to rule on whether the “ministerial exception” applies to a teacher who the school has designated a “minister.” The ruling is important because if the “ministerial exception” does apply that teacher cannot sue the school under the Americans with Disabilities Act. Although I feel quite safe in my current situation, the case hits far too close to home. Anyone interested should definitely head over to REM Runner (because she provides far better clarity to the case than I could ever hope to do).

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Filed under Confusion, Education, Emotions, Empathy, Exhaustion, Family, Friends, Frustration, Gratitude, Honesty, Illness, Narcolepsy

Magic Moment

First and foremost, I finally made it back to work today – way to go, me. Thankfully, the day was relatively low key. I still am struggling mentally and physically, but I know that getting back into some level of routine will help me in many ways. We also were introduced to an interesting program today – the Green Dot initiative (www.livethegreendot.com). The program targets power-based personal violence with strategies to encourage bystanders to become allies. While the presentations left something to be desired, I love the core concept and the message of one small action at a time is a tangible and powerful one. Hopefully, it can be one more tool in the constant struggle U.S. society, in general, and schools, in particular, use to combat bullying and verbal, emotional, and physical violence.

While the day was tiring, the highlight came at the end of my work day. A dear friend (and former co-teacher) shared an exciting event from break week. This teacher has been accepted into a doctoral writing program. Like me, this person has also had a difficult year; in fact, I would argue one that is much worse than mine. Thus, I am thrilled that this colleague will have options moving forward. The individual still needs to hear from some MFA programs too. Another piece of our discussion made my heart race even faster, though. One possibility is that this friend could join my teaching team again. If that were to happen, I would be elated. In fact, this person even proposed an option that would involve me arriving each day at 7:30 AM, and I am actually considering it. One, I would do just about anything to work with this person, but two, I have an incoming ninth grader in my home who needs to get to school around that time any way. For grade school my wife has been the primary morning driver, but I was already worried how our family would handle the change to high school. Clearly, many other things could happen, but I am feeling more hopeful today than I have in a long time about what the future might hold. It is amazing how a single five to ten minute period can make such a profound impact on me. I also love that narcolepsy has made it more likely that I am able to appreciate those moments. Rather than dwelling on a multitude of negatives from the rest of the day, I can cherish a shining instant of joy.

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Filed under Blessings, Education, Emotions, Excitement, Family, Friends, Gratitude, Hope, Insights, Joy, Narcolepsy, Parenting, Wisdom

Tired and Troubled

Somehow, I have managed to let another month pass without posting. Writing about this crazy condition is vitally important to me, but the “basics” of my life have felt horribly overwhelming. I also think that either my narcolepsy is intensifying, or my amphetamine is diminishing in its impact. of course, there is actually no way to determine that. All I know is that I have continued to “cut back” what I do, and I still find it harder to do this lightened load – which I find horribly frustrating.

My school year is actually going well. I have been better about correcting and more prepared for my teaching. I am also doing a better job of limiting myself to my part-time hours, rather than spending excessive amounts of time at school (well outside of my contract time). That being said, the year has also been tremendously draining. Our teaching team was tremendously successful last year, but I think we are all feeling pressure to be “better.” While I think we are doing that, we are putting stress on ourselves. We have also developed a new approach to homework. It works well for many of our students, but two groups are struggling. Our students with poor time management skills are not spacing out their work and turn in poorly done materials. On the other hand, our overachieving students have been trying to do two to three hours of homework each night. Our expectation is that student would spend two to three hours maximum per week. As a result, we faced a number of questions at conferences from parents and guardians. Thankfully, most of them accepted our explanation, but a few still felt like we should change what we are doing because their daughter or son was continuing to do two to three hours per night. I am empathetic, but fail to see how we are causing the problem.

The other thing contributing to my struggles is the bizarre course of events over the last two months in my house. Our September had more activities and events that I can ever remember us having. The worst weekend involved my wife getting me at school at 2:45 PM on a Friday. We spent the next three hours and thirteen minutes traveling to Duluth (a trip that should take about two hours). We arrived for a family wedding with two minutes to spare (literally). Then, we checked into the hotel and attended the reception. I then got up early the next morning to drive my daughter back to the Saint Paul for a voice lesson. It was her first lesson, and the directions given by the organization were flawed to say the least. We managed to arrive only two minutes late for the voice lesson, but the stress of it all buried me. My wife had stayed in Duluth. When she returned on Sunday, I was still recovering, but there was a tremendous amount of work that needed to be done. I pushed myself to do it, and I exploded at my family. Then, I got to school on Monday so exhausted that my team members sent me home. It has been rocky since then, but is finally beginning to level out.

In the midst of all of that, my relationship with Narcolepsy Network turned markedly sour. They let their web master go and cut those of us who were moderators from access to the primary tool that we used to help moderate the site. When I emailed to express my disappointment in the entire situation, I received two emails. One was heartfelt and personal, explaining that I was a valued resource. The other was a generic message to all of the current moderators, saying essentially the same thing. Unfortunately for Narcolepsy Network, they thought the first version of the generic message to me did not work, and thus they forwarded the template. Because of that I learned that they had sent the same message to two moderators who had done nothing for over six months. Both of those individuals had been alienated by the inaction and the rude comments of board members. I then wrote an even more terse email questioning how they could “value” my work when they clearly had no idea what moderators were active and which were not. The sad reality is that many of the board members STILL have not gone to the forums, even after the things that took place. As a result of it all, I have done little online posting – at Narcolepsy Network or on Facebook. I am even struggling to do work for my local support group (which I essentially help to run). I just hate the idea of spending hours working on things, only to have some uninformed baord member swoop in and yank it away. Much of my frustration with the Narcolepsy Network centers on a new website that the web master was developing. He had is essentially ready to go live last November, but the board would never approve it. I personally spent well over 20 to 30 hours writing and editing content for the site, but never heard anything from the board, particularly the ones who were supposed to be overseeing the site. The even more irritating part is that while the new site was constantly being labeled as “un-ready,” the current Narcolepsy Network site was live and contained far more errors and inaccuracies than the “un-ready” site. Because the web master is my friend, I stuck with the process, hoping that we would eventually be given approval. Instead, they fired him. Certainly, there may be legitimate reasons for what they did, although I have serious doubts. Even more unbelievable is that after hearing nothing about my work for the site, or about the quality of my writing, I received praise from three board members and a couple of employees of Narcolepsy Network.

I still want to “help” others with narcolepsy, but my own struggles are making it hard. I am heading to the national convention for Narcolepsy Network at the end of this week. I do plan to touch base with one member of the board to see if I can learn more about everything that happened. At the same time I remain unimpressed by the things I continue to see from Narcolepsy Network. For instance, even though I have clearly stated that I am not “helping” them at this time, I am STILL receiving emails from the people planning the conference. Today’s series of emails was wonderfully ironic. Since all of the forum moderators “resigned” (after we were cut off), the board is hoping to find “motivated moderators” for the forums. Someone came up with the line, “We want MM for NN” – with “MM” refering to “motivated moderators.” Since my initials ARE MM, I was sorely tempted to respond to the email, “You had MM, but chose to get rid of him,” but felt like it would be sour grapes. In the end, it drives me crazy that the one national organization for people with narcolepsy seems to be clueless when it comes to growing the organization and to helping the vast number of PWNs who are searching for a lifeline while they are online.

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Filed under Anger, Confusion, Depression, Education, Exhaustion, Family, Friends, Frustration, Honesty, Loss, Narcolepsy, Narcolepsy Network

Missing Month

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

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

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Filed under Blogging, Education, Exhaustion, Friends, Honesty, Narcolepsy, Narcolepsy Network

Happy Homecoming

We had a fantastic day on the road today. We experienced little heavy traffic, avoided any and all foul weather, and got from Hammond, IN to Saint Paul in LESS than eight hours. That includes two pit stops (one of which was also a re-fueling stop) and an hour long lunch at the Norske Nook in Osseo, WI. My wife did a bulk of the driving, but I also took a shift. While it taxed me, I handled the situations and my mood better than I did yesterday.

I drove from just across the Wisconsin and Illinois border until the first Dells exit. It turned out to be more than we had planned on me driving, but part of that was how frazzled I was at the end. Most of the stretch was good, but traffic got boggy around Madison (which frustrated me again). I also struggled with the argument that my wife and daughter had around the same time. My daughter is amazing, but she is also twelve (soon to be thirteen). She has a HUGE heart, but is prone to defensiveness whenever she is forced to confront uncomfortable issues. My wife was suggesting that our daughter start practicing her trombone soon. That did not go over well, and the ensuing conflict resulted in our daughter (once again) being disrespectful to my wife. I did not explode, but I wanted to do so. I fumed about it, though, which made my wife nervous. To her credit, she gave me space (and encouraged our daughter to do the same). My wife also confronted our daughter about the disrespectful language – in a calm and appropriate way. While I did wind up pushing 20 miles farther than I had initially planned (due to a cruddy set of circumstances – poor lane changing and an unhelpful exit configuration), we all stayed grounded.

Other than that one moment, the rest of the trip was fairly low key. All three of us were thrilled to get home, but also had a blast on vacation. I truly can’t remember another trip that ended this well. My wife and I both got some work done tonight, and we created a rough plan for the week. She needs to get a presentation planned, so she is likely going into her office tomorrow even though she took the day “off.” I am hoping to get one or two small things done around the house, but I am making a conscious effort to keep Monday and Tuesday light because I know I need to recover from the trip, particularly the realities of spending two long days in the car. Our daughter was scheming plans for herself three days ago. She even went to a friend’s house tonight. I am looking forward to spend a least two or three days with her during the next two weeks. It should be fun to “goof off” with her even as I get myself into school mode.

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Filed under Blessings, Driving, Family, Friends, Gratitude, Honesty, Hope, Humor, Joy, Marriage, Narcolepsy, Parenting, Sharing, Travel

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.

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Filed under Blessings, Cleaning, Excitement, Exhaustion, Family, Friends, Gratitude, Honesty, Joy, Love, MOONS, Narcolepsy, Parenting, Relationships

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.

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Filed under Blessings, Family, Friends, Gratitude, Joy, Love, Narcolepsy, Narcolepsy Network, Relationships