Category Archives: Relationships

Ready to Return

While I have no idea if anyone has visited my blog at all recently, I feel like the fog and haze of the past three years is finally lifting. I decide in February (with much consultation with my amazing and wonderful wife) that I needed to leave my teaching job that I have had for the past 20 years. While my health certainly played a role in the my struggles of the past three years, the reality is that my job had become a deeply toxic environment for me. While I still love my colleagues, my students, and the essential nature of teaching, the leadership and decision-making of my former school continued to drag me lower and lower into depression and frustration.

After I turned in my resignation, I felt a tremendous weight lift, but I still needed to finish the school year. Things went well, but the experience remained overwhelming. In the midst of all of that chaos, more and more signs clarified for me that I made the correct decision. While the school leadership seemed completely nonplussed by my resignation, the much clearer (and far more positive) message came in the form of potential new positions. From my classroom experiences of the last five years, I knew that my next job would involve technology integration, rather than direct student instruction. I had not planned to do any job searching until the school year ended, but potential positions kept finding me. I was interviewed for two positions in public school settings, and although I did not get those jobs, I was not only flattered, but also realized that I was definitely qualified to be a technology integration specialist. Then, as a result of submitting some of those other applications, a friend and former colleague offered me a position at a Catholic grade school. I took the job and started there on August 1 of this year. Even though the school year has not officially begun (and there is a great deal of work to do), I know (without any doubt) that I have made the right choice. I am significantly more at peace and in a far more supportive and well run environment. The added bonus is that my new colleagues are also more open as a group in pursuing technology integration.

Underscoring these positive professional changes, my personal life has also improved markedly. I made the decision to engage in professional therapy again at the end of the school year, in large part because of the impact my previous job was having on my family. The experience has been and continues to be tremendously rewarding. I have found myself, particularly in the past three weeks, looking at the world in a far healthier and more balanced way than I ever have in the past. My therapist is wonderful — in his ability to support me, to draw out my emotions, and to challenge my previously established views of myself and the world. What is most remarkable is that my therapist  has helped me to confront some of the darkest message that I send myself and to integrate them into who I am, allowing me to feel far better about myself. After many years of experiencing joy infrequently, at best, I fins myself overwhelmed by joy on a daily basis.  It has been glorious, to say the least. Even more importantly, all of this has made my relationships with my wife and daughter stronger than ever.

I am thrilled that I my life and world are in such transition and upheaval. And, I am proud to be posting to this blog once again. My goal is to post at least once a week. It will be good for me on many levels, and I still believe that it is important for me to explore and process how narcolepsy impacts my life. As was the case when I began this blog long ago, if no one else reads this, that is just fine. Nonetheless, I do hope that I can help a few other PWNs (and other folks with sleep issues) in some small way. On that note, I am already signed up for this year’s Narcolepsy Network Annual Patient Conference in Atlanta from October 18-20. Hope to see others there!

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Filed under Balance, Blessings, Education, Emotions, Excitement, Healing, Honesty, Hope, Humility, Joy, Love, My story, Narcolepsy, Narcolepsy Network, Non-narcolepsy stress, Relationships, Support, Therapy, Wisdom

Confounding Conundrum

I often think that I work in a mad house, but sometimes things are even more infuriating than normal. Over the past three days, I have been aghast at the flippancy with which other educators handle large scale issues, particularly ones that could have major repercussions. Some of my dismay is fueled by the struggles that I have personally had for the past 12-14 months, but another part of it is the unclear nature of the pseudo-collaborative hierarchy (how’s that for an oxymoron) that runs my school. Couple all of that with a chronic illness like narcolepsy, and no wonder I am drained every day.

Although the posts are not here (yet, I hope), I wrote nearly a year ago about how the school had turned my life upside down by pulling the two other teachers on my team to teach a different course with another team. My new team is surviving, and one of my new co-teachers is outstanding. The other, unfortunately, is not, but that might change for next year. Nonetheless, my two former colleagues went to this other team and have had a rougher year than me. Because of various other issues, their course actually increased in enrollment and now needs a second team to teach it. But, no other faculty want to become a part of the course. So, in ways quite similar to my experiences last year, someone from that course approached a teacher on one of the other teams that teaches the same course that I do. That alone was not supposed to happen again. From that initial conversation that teacher’s entire team suddenly thought that they might be moving to the other course, meaning that within a two year period, a grade 12 course might have pulled 5 teachers from a grade 9 course.

Apparently, everything shifted again today, and now none of the teachers on that other team appear to be moving to the other course, but my concern has far more to do with the guidance (or lack thereof) that any of us are receiving when it comes to curriculum decisions. Even for a healthy teacher, the daily grind of this job is tough to endure. For me, though, my narcolepsy often makes it a struggle to even get to work. When insane decisions suddenly rear their heads, I find myself completely derailed. In one way, whatever happens this year has no impact on me – other than ripping the scabs off of my psychological wounds from last year. At the same time, however, I am deeply affected if major changes happen in one of the other teaching teams of the course I teach. If an entirely new team came on board, the nature of our curriculum would necessitate that teachers from other teams spend large chunks of time with the new team to get them on track. The problem is that I cannot afford to expend that energy. I need to save my strength for my own classroom, for my family, and for myself.

Perhaps, that last item is the part that is most troubling to me. I continue to struggle to save anything for me even now, so I cannot imagine how torn I will feel if there is a brand new teaching team that might need my help. The emotions are compounded by the hurt that I still harbor from last year, though. My school never should have allowed both of my co-teachers to leave at the same time. I would argue that it should never happen, regardless of who the remaining teacher is, but having the “anchor” person on a three person team be someone with a chronic illness is downright criminal. I admit that even I minimize the realities of my condition, but the bottom line is that I am a person with a disability. For my school to place me in a situation where I need to bring two other people up to speed on what we are doing each day is grossly unfair to me and to my students. While we have weathered the storm of this year decently in our classroom, my home life, and particularly my family, have paid a huge price for the extra energy that I have expended trying to make things work in my classroom. The worst part is that I raised these issues when I finally learned what was going to happen, and I went in to discuss them during the current school year when it was obvious that things were not working well. I would even be okay with the complete lack of follow-up that has been the reality of my personal situation IF the school seemed to be working to prevent anything like my experience from last year from happening again. Instead, though, I have spent the last 72 hours learning that the lessons of last year were apparently unlearned in less than 365 days. Yippee.

In the end, everything will work out, but each time something like this happens, another question mark is raised in my mind. I know that I am a good teacher and that most students are well-served by my school, but I feel like we continue to move closer and closer to making some catastrophic decisions. Plus, whether it is the stress or my narcolepsy worsening, making it to work gets tougher and tougher every day. I do hope that I can maintain my current part-time level for four more years. After that, who knows. I love teaching and will miss it terribly when I retire, but I also need to consider what are the core priorities in my life. Those things must come first which I fear means that my teaching career will likely not see the dawning of 2020.

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Filed under Confusion, Depression, Education, Emotions, Exhaustion, Family, Frustration, Honesty, Humility, Loss, Narcolepsy, Relationships

Bite Size Blogging

Apparently, today is moving day! As I mentioned in my previous post, Bite Size Life is a promising, new location on the web for narcolepsy support. I have been intending for sometime to get my blog transferred there, but the stars refused to align. Suddenly, as so often happens in my life, everything came together within an hour of my previous post. Thus, Narcoleptic Knights can now be found at www.narcolepticknights.bitesizelife.com. Hopefully, I am bright enough that I can continue to have the posts I write there, show up here too. The good news is that ALL of my Blogger posts are already on the bitesizelife. com site! Hooray! I do hope that this change does not cause major problems, but I am excited for a new adventure. Also, I am more determined than ever to provide some live blogging from the Narcolepsy Network conference. Cheers!

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Filed under Blogging, Excitement, Narcolepsy, Narcolepsy Network, Relationships, Sharing

Jetting to Jacksonville

I awoke this morning in a huge hotel room. The national Narcolepsy Network patient conference begins today in Jacksonville, Florida; I arrived late last night (technically, early this morning). While I remain uneasy about being here, I must confess that my beautiful view of the Saint John’s River certainly makes me glad for the break from my daily grind. I also know that I will enjoy many aspects of the conference. Hopefully, I deepen some of the friendships with other PWNs that I began at last year’s conference. And, many new PWNs await me as well.

At the same time I could not help feeling loss and regret as I ate during my layover in Atlanta. More than anything, I want to help and connect with other PWNs. While this blog does that, my primary outlet for the past year has been the Narcolepsy Network forums. At least it was until mid-September. I deeply believe that the work of some dear friends in those forums is a huge reason for Narcolepsy Network’s recent upswing in membership. Certainly, the number of people using the forums exploded during the last year, but I also know that Narcolepsy Network saw tremendous growth in paid memberships during that time as well. Unfortunately, the people most responsible for making the forums a welcoming and safe place for PWNs will not be with at this conference, nor do they oversee the forums any longer. I remain utterly bewildered as to how the people running Narcolepsy Network could be so obtuse as to not understand the vital role that those forums and individuals have played in the organizations sudden expansion.

The crux of it all for me is that I see the internet as a PWN’s most vital tool. Few of us are able to find doctors who truly understand our condition. Although many larger areas do have local support groups, most PWNs need far more connection than a few meetings a year can give. Those factors, added to the reality that many PWNs literally know no one who has their condition until they find a support group (if they can find one), mean that the internet is the one location that a PWN can interact with other PWNs on a consistent basis. Up until mid-September, I would have believe that such a reality was obvious to everyone associated with Narcolepsy Network. Now, though, I have serious doubts.

My experience at last year’s national conference was incredible. Certainly, being some place where I knew that 300 other people truly “understood” narcolepsy was a primary component of my joy, but far more significant was meeting face-to-face with many of the people that I had meet online. I am guessing that I will have a similar reaction this year. But, what vexes me to no end is that I doubt that other PWNs will get to have that opportunity in years to come. Since things changed on the Narcolepsy Network forums, I do not see the same level of interaction and vitality there. In fact, it is strange to see that in August the forums were adding 20 new members within 2 to 3 days, but now it might take a week or more to add 20 people. My observation is not researched or vetted, but it definitely seems like the energy in the forums is diminishing.

Clearly, I would love to see my friends back running the Narcolepsy Network forums, but deeper than that I honestly saw those forums as a way to improve significantly life for other PWNs. So many of us struggle to interact with the world because our enery is so limited. But, going online takes far less effort, and one need not drive somewhere to do it. I left my position as a moderator on the forums because of the way my friends had been treated, but I also did it because I did not (and still do not) trust the decision-making of the current board when it comes to Narcolepsy Network’s online presence. If they honestly had no idea how active and energetic their forums were, it is a sad reality. Certainly, many other online support groups for narcolepsy exist, but Narcolepsy Network’s advantage was (and still is if someone can right the ship) that they are a federally recognized non-profit with a national convention. Adding a strong and lively online community to that would make them the best resource anywhere for people with narcolepsy. Now, I wonder what will happen.

Of course, I could be crazy. Narcolepsy Network might have thrived in the past year due to some other reason. Only time will tell. Also, the other support groups, particularly the Facebook Narcolepsy Support Group and a new site Bite Size Life, might adequately fill any void created by the changes at Narcolepsy Network’s forums. Another definite possibility is a group in Second Life called Slumber Society. In the end, though, I need something for me. Selfishly (which I need to make a priority more often for myself), I need to find something that will give me the same fulfillment that my moderating on the Narcolepsy Network forums. Yes, I could “ask” to become a moderator for Narcolepsy Network again, but I will not work for the people currently “in charge” of the forums. As far as I am concerned, they haven’t a clue about running a forum effectively. I also know that I can’t afford to put in the energy that I did over the past year only to have it ripped away again. Thus, I find myself in limbo. I need to help other PWNs; it is something I do well. But, I also am struggling with my own energy so much that I do not have the time to figure out where to put my (currently non-existent) “narcolepsy support” energy. Time will eventually guide me in the correct direction, and I have learned enough to allow myself to trust the process. Unfortunately, that does not lighten my current mood, nor does it mitigate the hurt that I still feel from the events in September. Still, I know this chapter is just one more lesson that narcolepsy has for me to learn.

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Filed under Depression, Education, Emotions, Exhaustion, Faith, Frustration, Honesty, Loss, Narcolepsy, Narcolepsy Network, Relationships, Sharing, Support

Craft Craze

I had an excellent time today going to look at crafters. Unfortunately, my wife was too ill to join us, so my daughter and I ventured out alone. We needed to exchange a shirt at the aquarium first, which was also an excuse for my daughter to get an awesome funnel cake (it looked like a pound of powdered sugar!). Then, we headed east for the eight mile artisan loop. Since it was hot, we knew that we could not go to many places, but we did check out a few shops.

The woodwork and art that we found blew my mind. I am glad that we made the trip because I will now push harder to make it a priority the next time that we come here. Gatlinburg has amazing talent in this eight mile loop. We did make a few purchases, but I was tempted to get far more. Wisely, I realized that my wife would need to okay the larger purchases. It simply means that we need to return here again.

The best part of the day, though, was simply getting out. My sinuses definitely seemed to be better today. I felt good being more alert and having the chance to connect with my daughter. I continue to worry that narcolepsy will prevent me from knowing as well as I might. Gratefully, days like today remind me that I can find windows. I am excited to head home, but feel like I had a great vacation in spite of my medical woes. We have already packed most of our stuff, allowing us to plan for a 6 AM departure. I hope that I can be ready since I was the delay on both days of our driving down here. Tomorrow is definitely the “longer” day, but we should hit our worst stretch (Pigeon Forge – 5 miles in one hour) before anyone else is actually awake. We will stay in northern Indiana again, but booked a hotel slightly closer to Chicago. I like that I am ending this trip on an upbeat note. That has not been my previous experience very often.

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Filed under Balance, Driving, Excitement, Family, Gratitude, Illness, Marriage, Narcolepsy, Parenting, Relationships, Sinuses, Travel

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!

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Filed under Exhaustion, Family, Frustration, Illness, Love, Marriage, Narcolepsy, Parenting, Relationships, Travel

Wild (weird) Week

I am struggling to believe that I went aq week without posting. Sadly, that is in fact the reality, though. I found myself overwhelmed by meetings and events for most of the past week, and on Friday morning we departed on our trip. The strategic planning meetings on Monday and Tuesday were incredible, but they overwhelmed my body on Wednesday. I did still manage to get some housework and yard work done, though. Unfortunately, that effort coupled with more meetings and errands on Thursday left me FAR behind in my trip preparations. I stumbled out of our office on Thursday night around 11 PM, took one dose of Xyrem, and knew that I would need to get up as early as possible without a second one because I still had far too much to do. It was also the second night in a row with a solo dose.

I did manage to get up between 4:30 and 5 AM, but I still delayed our departure by nearly an hour and a half. Fortunately, my wife and daughter remained calm. I did do some driving (about an hour and a half in the middle of that leg), but it wiped me out. We also got stuck in ridiculous traffic around Chicago. Being the car so long and the fact that I was baking on my side of the car left me with a horrific headache. Fortunately, my wife and daughter still went and enjoyed the dunes on Lake Michigan. Unfortunately, I was unable to awaken for my second dose that night, thus it was three nights with only one dose of Xyrem. The trip from northern Indiana to Tennessee was even longer than Friday’s drive. Again, my wife did a bulk of the driving, but I again took a 1.5 hour section in the middle. I was fading badly at the end, and we wound up snapping at each other, but reconciled over lunch. The worst part of the trip came at the end. After 550 miles of driving, we spent nearly two hours covering the final 30 miles because traffic into Pigeon Forge and Gatlinburg, TN is so awful. Again, I was shot and baking.

I did get an okay sleep last night, but am also frustrated because our resort only has ONE internet computer available for guests. At some of their other resorts, they at least make wifi available in the lobby of the clubhouse, but at this one they CHARGE for it! So, I am sitting in the parking lot of a McDonald’s using my new Qwest WiFi (available through AT&T). Of course, it took forever to make the connection work right, so I am only going to get a couple of chances to write on my blog. Worse, I truly had hoped to do a little work while I was here. Hopefully, I will work something out. I certainly plan to enjoy our vacation, but this is the first long trip that we have taken with me trying to cope honestly with my narcolepsy. I functioned poorly today (at best). We are going hiking tomorrow and rafting on Tuesday. While I am excited about those activities, I am also worried that I will be unable to do much else. I know that will frustrate my wife and daughter. We will see what tomorrow brings, though. I need to run now. I need to get gas for our car and to get groceries.

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Filed under Balance, Chores, Depression, Driving, Exhaustion, Family, Fear, Frustration, Honesty, Loss, Narcolepsy, Relationships