Category Archives: Support

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

Family Fun

My parents are in town, so my wife, my daughter, my parents, my sister, my daughter’s friend, and I all made a trip up to Duluth to see other family members. Technically, we made two trips because everyone except my parents and me headed north on Friday. My parents drove me up Saturday. The weekend has been fun, but as always travel is exhausting for me. I am more than a little worried about the impact of driving up on Saturday, seeing lots of relatives, and then driving home on Sunday at midday. Given my stress level from the past week at my job, my time this weekend might have been “best” spent collapsed on a couch in Saint Paul. Because the intensity level in my classroom will only increase in the coming week, I will no doubt pay for pushing my body on the weekend too. I certainly am feeling far more tired today than I have on many other recent Sundays. And, we still need to get in the car for the trip beck home. I will do my best to stay low key today, but there is much to be done in the house too. It has been great to get away, but I hate that life with narcolepsy makes even a weekend trip overwhelming. The other piece that makes a weekend like this tough is that no one in my family fully “gets it.” My wife does have the best level of understanding, but even she had a list of chores I needed to do before leaving for Duluth on Saturday morning. My complete lack of energy on Friday meant that I needed to work like mad on Saturday before my parents arrived. I did a good job of cleaning, but was sweating profusely by the time I finished. For my parents and my Duluth relatives there are always a lot of questions, which I appreciate because it shows that they all care, but narcolepsy rarely makes “sense” to anyone other than other people who live with the condition. I need to get ready to head home now, and tension levels are rising in the hotel room, so ending this post is definitely in my best interest regardless of how tired I am.

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Filed under Blogging, Cleaning, Driving, Exhaustion, Family, Frustration, Gratitude, Honesty, Narcolepsy, Support

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

Paying Penance

In the cosmic ebb and flow of my life, I knew a day like today was coming soon. Last night, for the third night in a row, I did not make it to my bed until “today” (meaning post-midnight). While it is summer, and I do not have looming deadlines, I can ill afford to get wildly off my regular schedule. The transition back would take me one to two weeks at least. That said, I am then faced with getting up after only one dose of Xyrem. That prospect is also rotten because I eventually get overly run down and cranky. I finally decided last night that I would actually do my second dose of Xyrem at 4 AM and would then be way off my regular routine.

Instead, I slept through the alarm until 5:15 AM. Since today is the opening show in my daughter’s play, I figured I’d better not risk sleeping the entire morning away. Thus, I rose at 5:30 AM after only the one dose of Xyrem. Needless to say, I feel terrible today. My body is furious that I have not gotten nearly enough sleep of late. I also am feeling bizarre pains in the strangest of places because I have done little exercising this past week. I am so “off” that I actually had a sleep attack mid-morning while trying to do some work. I know it is bad when my sleep attacks are strong than 30 mg of amphetamine less than 2 hours after I have taken it.

Fortunately, the day has been extremely low key at our home. I had hoped to run some errands, but I realized mid-morning that it would be unwise for me to try. Instead, I simply plodded my way through some work for school. It was nothing more than data entry, but it will help us throughout the year. One of my greatest lessons from my narcolepsy is to accept the situation at hand and then to allow myself to adjust to it. Even a year ago, my day going sour would have derailed me completely. That would be bad on any day, but if I had lost my cool today, it would have been grossly unfair to my daughter (and my wife).

Underlying the normal zaniness of our home, a subtle (yet overt) pressure has been building all week. Tonight at 7 PM CDT, my daughter will perform with other children from her school – Wonderland! The Musical Misadventures of a Girl Named Alice. Given my daughter’s personality, the tension would have been mounting even if her role was nothing more than a chorus member, but she is actually Alice in the show. She definitely has worked hard and is super excited, but her butterflies are likely the size of Mothra right now. AND, her mother (my wife) might be even more nervous. I have no doubt that she will be fantastic, but I also know that my daughter is like me, so she will dwell on every missed line and bad note. Our daugher will be on the stage for the entire performance, has approximately 300 lines, and sing the majority of two of the songs as solos. In other words, she is working her tail off the entire time. Having run lines with her, I know she will be spectacular and the show will be a hit.

But, even “knowing” that, it would have been unwise for me to risk coming unglued today. Beyond working on my few minor items, I tried to help my wife and to support my daughter. I also worked to keep the mood light. I suggested that we watch Shakespeare in Love. Not only is an “actor’s movie” with all of the behind the scenes silliness, but also it is a great reminder that “it all works out in the end.” As Henslowe says, we don’t know why or how – it’s a mystery. I think it is important for my daughter to have that in mind for tonight. The cast has first graders through graduated eighth graders in it. They also have NEVER had an uninterrupted run through of the play – the music director is a tad flaky. When the first “complete” run is on opening night, it can be unnerving. But I am hoping that my daughter can remember that as long as they smile, laugh, sing, and do most of their lines in order, everyone will adore the show.

My final regret in all of this, though, is that part of me wishes that I did not have to go tonight. Truth be told, I am too tired to appreciate it. Nevertheless, I would not miss this for the world. My daughter is far too important to me to let my narcolepsy get in the way. At the same time, I dearly hope that I will be able to forgive myself if I fall asleep at her show. I don’t think that will happen, but anything is possible, especially the way I am feeling today. And, even as I write that I realize that I have yet to take my second dose of amphetamine for today – oops! I LOVE this crazy condition. I need to get those meds right now, but my error may just be the thing that keeps me awake through the entire show.

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Filed under Balance, Chores, Emotions, Excitement, Exhaustion, Family, Frustration, Gratitude, Marriage, Narcolepsy, Parenting, Support

>Blog Bonanza

>My excitement went through the roof today. I learned of yet another blogger with narcolepsy. Narcogirl write Confessions of a Narcoleptic. Similar to the other blogs that have come on my radar lately, she approaches her blogging in the fashion that I do. She is using the blog as a place to record her thoughts and her experiences with narcolepsy. When I first started writing mine, I was so disheartened that I only found a few other people writing about their narcolepsy. I certainly love the forums I have found on Facebook and at the Narcolepsy Network site, but I adore the chance to read the more personal reflections that tend to populate narcolepsy blog posts.

I now have fourteen other blogs listed in my “Other Narcolepsy Blogs” blog roll. Not all of them are updated frequently (in fact some have not had a post in a year or two), but it is cool that the list is growing rather than shrinking. The fact that I have added six blogs within the last three weeks is even more incredible. And, a few of those new blogs do post at least once or twice a month. Narcogirl has started off at an impressive pace. As one who has gone through feast and famine in my own writing (one month with 19 posts, another with 3), I think it is great that anyone with narcolepsy takes a few moments here and there to post at all.

I truly see these others bloggers as gifts. The chance to write about my own experiences is phenomenally rewarding in and of itself, but few things benefit me more than the chance to learn another PWNs story. While no PWN has the same story or symptoms or medications, we can all relate to the insane experiences that others have with this crazy disease. Thus, finding other blogs help me to remember that I am not insane. I also love that other PWNs are willing to discuss their condition in a public setting. I hate the idea that I need to hide my condition. I certainly do not “like” my narcolepsy, but it impacts who I am. I don’t want people to feel sorry for me, but I also do not want to deny that I am sleepy most of the time. It IS part of me.

I defintely hope that my list of other narcolepsy blogs continues to grow. I also hope that as more PWNs lift their voices and share their stories that we will all benefit from the expanding awareness that more blogs will bring. Please consider reading some of the blogs listed in my narcolepsy blog roll. It will be worth your time.

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Filed under Blessings, Blogging, Education, Excitement, Gratitude, Heroes, Insights, Narcolepsy, Support, Wisdom

>Summer Surviving and Blog Blessings

>Somehow, my summer has managed to feel as frenetic as the school year did. I spent the first three days of my “vacation” meeting with the other folks who teach the same course that I do. While the work was exhausting, it was also extremely productive. We are making huge strides by mapping our joint curriculum. I thoroughly enjoyed the time that we all spent together, and I have high hopes for the coming year.

I have also been preparing for the creative writing course that I have taught for the past eight summers. As I was mapping my regular academic course, I was also puttering with the syllabus, web site, and lesson plans for this summer course. My co-teacher and I got to spend some time together today. I also got to spend time with one of our former students (and chatted with another) who is now interning with the aspect of the program that enrolls my daughter. I love that this young man is still a part of the Minnesota Institute for Talented Youth, but I also am overjoyed that I will get to see him more frequently over the next two weeks. This year will be the first time in five years when this fellow is NOT in our classroom.

While I thought that I would never experience anything in my “regular” teaching career like MITY, I realized over the past two weeks that my current situation at school IS like MITY. The rigor and creativity are present in both places, and I get to team with marvelous co-worker in both situations. Thus, my excitement for MITY feels different this year. I am still elated that it is here again, but it is not my “salvation” as it has been in the past. I think that is a good sign.

Finally, I need to give a shout out to a fabulous new blog that also discusses narcolepsy. It is actually called Narcolepsy and is written by a person with narcolepsy in Florida. He is close to my age and has a markedly similar approach. He too simply wants to process (for himself and others) what it is like to live with this unnerving, facinating, awkward, and bizarre disease. I do hope that others will check out what he has to say. Best of all, he posts on a fairly regular basis – something I am hoping starts to happen here again (soon).

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Filed under Blessings, Education, Emotions, Excitement, Exhaustion, Friends, Gratitude, Honesty, Narcolepsy, Serendipity, Support, Wisdom

>Fabulous Friends

>I continue to struggle with my energy, but I had a great boost today. Even though the early afternoon was filled with drizzle and clouds, I found sunshine in a Perkins in Edina! Four of us met there today to do some MOONS planning. While I had many other things that needed doing, I know I made a great choice today. Seeing my friends from the MOONS group made my heart soar. Even better, we actually got somethings done. Typically, we banter and chat so much we rarely get anything decided.

Today, we generated ideas for some social gathering. We also decided to vary our meeting times. In an interesting irony, when MOONS-MN first started, most PWNs present wanted to meet at 10 AM. While that seems crazy to me (and the other planning folks – we barely make it to the meetings on time), we wanted to serve the group. Lately, though, we have heard that some would like a later meeting time. Thus, we will still meet at 10 AM on May 30, but our meeting on September 12 will begin at 4 PM. The plan will then be to alternate between the two times. It should be fun.

As for the “social” ideas, we are hoping to have a yoga session (that could become a PWN yoga class), a bowling event, a family picnic, and another movie session. All of the events should be great, but the best part is that we are striving more and more to provide opportunities for PWNs to gather with each other and to share stories about this crazy condition. I also love that we spent time thinking about bigger issues, including suggestions for both Narcolepsy Network and for physicians who treat people with narcolepsy.

Still, the best part of the afternoon was spending time with friends who honestly understand the difficulties and frustrations of this disease. It is so hard to explain to people why I seem to be dragging or how hard it is to form a thought at times. With my PWN friends, we don’t even owrry if someone drifts off, and we all regularly ask to have things repeated because we missed them. One of the strangest realizations of my day is that I “knew” none of the people I met with today one year ago. I still marvel at how much has changed in just 365 days!

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Filed under Blessings, Excitement, Friends, Gratitude, Heroes, MOONS, Narcolepsy, Narcolepsy Network, Sharing, Support