I am sitting in the cafe at the Minneapolis Institute of Arts. Correction, I am being paid to sit in the cafe at the Minneapolis Institute of Arts. I am here with the students in my Minnesota Institute for Talent Youth students. My co-teacher and I have brought our students here each year for the past four. Usually, I am pacing the galleries, looking for our students to photograph them, and worrying that I am “not doing enough.” I do periodically take a few minutes stop to look at a piece of art, but so often in the past I have felt like I MUST be the “teacher” while I am here.
I know I am slowly coming to terms with myself and my narcolepsy when my immediate thought this year was, “hey, I can use the time at the MIA to unwind a bit.” Not only that, but also I felt no guilt in that thought. Thus, MITY is paying my to chill this afternoon. Even better, I definitely feel like I am earning that pay. My co-teacher and I spent time on campus and here framing the experience. We are getting the students into a different environment to provide new stimuli to inspire their work. And, quite honestly, whether I am sitting here, or if I were pacing the galleries, I would not be helping my students write. In fact, one could argue that my hover easily could do more harm than good.
Even as I typed that, I realized that one of my students just wandered past. The young women and men that I get to teach a MITY amaze me. Often, they have been treated with ridicule and disdain because their intellects frighten even their teachers. Thus, most of them have no idea how to feel supported, or welcomed, or appreciated. Also, because they tend to “get it,” at least intellectually, the wonderful young women and men do not know how to be kids. By letting them roam, we are giving them the gift of trust and respect. They certainly do not need me to watch their every move, nor do they need one more adult who makes them feel uncomfortable. I have no doubt that the approach which my co-teacher and I take in the classroom (by treating our students as brilliant and thoughtful young adults) is a huge piece of the success we have had over the years. I am grateful that I am beginning to find ways to bring that same attitude to our field trip.
It is just one more way that narcolepsy has proved to be a blessing, rather than a burden. The reality during the previous two trips to the MIA is that I HAD to rest for long periods. I felt guilty doing it – “I can't let MITY pay me to rest” – but it happened nonetheless. Bottom line, though, is that I will be far more effective tomorrow because I took this time to relax today. So much of managing my narcolepsy is letting go. I tire rapidly and stress increases the energy drain. By being hyperconscious at a museum, I exhaust myself and do a disservice to my students. Thus, I am allowing myself to appreciate the stillness today. Hopefully, I will continue to embrace the gifts and the frustrations that narcolepsy brings me on a daily basis.
On a tangential, but loosely related, note, my Wii experience continues to be productive. I have now found myself on at least two occasions dripping with sweat while grinning and laughing. I am clearly getting exercise (and finding genuine strength building in my legs), but I am also having fun. Both of those are vitally important to me living with my narcolepsy. My physical endurance has fallen precipitously over the past two years. It is the awful reality that time for exercise has remained a distant priority as I have been forced to choose where and when I exert myself. At the same time, I have pulled away from many of the things that do make me laugh. My ultimate team was a major highlight of my life, mostly for the joy and camaraderie that it brought me. Sadly, the declining nature of my physical condition stripped the fun out of ultimate. While part of the pleasure I take from using the Wii is laughing at how stupid my Mii looks at times, I am also spending far more time interacting with my daughter. I had dearly hoped that the Wii would be a bonding element for our little family. Things are definitely developing that way. Finally, even if the exercise and fun were not happening as well as they are, I am overjoyed that I am using the Wii to reconnect with yoga. Primarily the “yoga” material on Wii is poses, but those alone are helping me reconnect to my body in a deeper and more spiritual way.
Showing posts with label Technology. Show all posts
Showing posts with label Technology. Show all posts
Friday, June 19, 2009
Museum Musings
Labels:
Balance,
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Hope,
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Saturday, May 30, 2009
Many MOONS Memories
Today was wonderful (and exhausting). Approximately one year after making it to my first MOONS-MN meeting, I presented my story. I also shared the many online resources that have been such a tremendous help in my journey. I honestly feel like the presentation went extremely well.
Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.
I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly "get it." The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.
I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.
Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.
I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly "get it." The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.
I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.
Labels:
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Thursday, April 23, 2009
Wrung out, but Writing
I don't have much energy because it is late, but I have felt the need to write for days. I am stunned how often life's whirlwind can suddenly shift, leaving me writhing in the dust. Even though last week was significantly more taxing, this week has seemed completely out of my control. A week ago, our teaching team was missing one member the entire week, while our students bombarded us with questions about their research papers. My household was also missing our superstar - my amazing wife. Yet, it is this week that feels more insurmountable. I doubt I will ever truly understand that aspect of myself or narcolepsy. This condition seems to have an unending supply of twists and turns.
Regardless, I have survived another week. I have a mountain of work this weekend - correcting and cleaning being the primary tasks at hand. Still, I am proud of myself for pushing through the challenges that continually crop up along the journey. I have had two intense department meetings this week. Two provided fantastic dialogue, but the underlying issues are enormous and get at the spiritual core of teaching. I also believe that another setback has been dealt in the realm of technology. After two years, numerous discussions, a day long listening session, and a full faculty and staff survey, our Technology Committee seemed ready to make a recommendation about modifying the usage rules for iPods/MP3 players and cell phones during the school day. But, during the chair's summary of the meeting (with only 10 minutes remaining) a slew of "issues" were raised - things we have discussed ad nauseum over the past two years - that delayed the process yet again. The ultimate irony is that our committee only makes a recommendation. The administrative team will give whatever we do final approval. Hearing about this situation today once again makes me questions whether this school is the right place for me or for my daughter. I hate that, but it also means that I am taking nothing for granted.
Regardless, I have survived another week. I have a mountain of work this weekend - correcting and cleaning being the primary tasks at hand. Still, I am proud of myself for pushing through the challenges that continually crop up along the journey. I have had two intense department meetings this week. Two provided fantastic dialogue, but the underlying issues are enormous and get at the spiritual core of teaching. I also believe that another setback has been dealt in the realm of technology. After two years, numerous discussions, a day long listening session, and a full faculty and staff survey, our Technology Committee seemed ready to make a recommendation about modifying the usage rules for iPods/MP3 players and cell phones during the school day. But, during the chair's summary of the meeting (with only 10 minutes remaining) a slew of "issues" were raised - things we have discussed ad nauseum over the past two years - that delayed the process yet again. The ultimate irony is that our committee only makes a recommendation. The administrative team will give whatever we do final approval. Hearing about this situation today once again makes me questions whether this school is the right place for me or for my daughter. I hate that, but it also means that I am taking nothing for granted.
Labels:
Confusion,
Education,
Emotions,
Exhaustion,
Family,
Frustration,
Insights,
Narcolepsy,
Technology,
Wisdom
Wednesday, April 15, 2009
Running Ragged
Driving my car today, I wondered how coherent I actually was. I did not doubt my ability to navigate effectively and accurately. My confidence was also high in my driving skills. At the same time, I am painfully aware that I am fuzzy on the exact details of the journey home. Plus, when I finally got here, my phone conversation with my wife is now the vague recollection of an echo. In that bizarre balance that seems to becoming my norm more and more frequently, I accomplished many things today, but I also used every ounce of energy that I could muster.
I am pressing myself to the limit. Some of the causes are unavoidable. One of my co-teachers is out on paternity level. Thus, only two of us are present this week to handle the onslaught of questions from our 40+ students in each section. Beyond that, we are working on research papers, which cause the number of student questions to escalate exponentially. I also have been logging long hours at my daughter's school. Frighteningly enough, I did not go to everything that I was supposed to attend (mostly because I did not trust myself behind the wheel of a car). Yesterday, I was at her school for three hours to help run a TechParent night. Today, my efforts aided in the second session of Poetry Club. Both things were cool, but they also drained me.
Beyond that, though, I have gotten much less sleep recently. I am forcing myself to milk my day for every spare moment. All of the priorities are "vital," both in reality and in my delusional mind, but they are taking their toll. As always, the thing that suffers most is my well-being. It also does not help that my wife is out of town. I always feel more desperate when that is the case.
I did have one moment today that was a "favor" for a friend, but was actually much more for me. A colleague teaches a class on loss. Most of their work centers on the loss of a close friend or family member, or a beloved pet. Still, the instructor has invited my in the past two years, because she understands that I too live with loss. When I spoke last year, I had just discovered Facebook and MySpace. I had also just start this blog. Thus, it was amazing to talk about my disease today. Even though I know the journey gets longer every day, I loved sharing my experiences because I do believe that narcolepsy (as much as I hate it) has saved my life. It has forced me to focus on myself and my true priorities.
I am handling my current exhaustion well. I am well-aware that I am functioning at half-speed at best, but I am more comfortable with that than ever. I know that many of my days are filled with mediocrity, yet that is far superior to one decent day followed by a month or two of misery. At least I can help students in limited ways, rather than being stuck at home. If that day does arrive, though, perhaps some of my friends at Narcolepsy Network will have worked out a cool way for me to still connect to other PWNs around the world. Okay, I must sleep before I fritter away another three hours.
I am pressing myself to the limit. Some of the causes are unavoidable. One of my co-teachers is out on paternity level. Thus, only two of us are present this week to handle the onslaught of questions from our 40+ students in each section. Beyond that, we are working on research papers, which cause the number of student questions to escalate exponentially. I also have been logging long hours at my daughter's school. Frighteningly enough, I did not go to everything that I was supposed to attend (mostly because I did not trust myself behind the wheel of a car). Yesterday, I was at her school for three hours to help run a TechParent night. Today, my efforts aided in the second session of Poetry Club. Both things were cool, but they also drained me.
Beyond that, though, I have gotten much less sleep recently. I am forcing myself to milk my day for every spare moment. All of the priorities are "vital," both in reality and in my delusional mind, but they are taking their toll. As always, the thing that suffers most is my well-being. It also does not help that my wife is out of town. I always feel more desperate when that is the case.
I did have one moment today that was a "favor" for a friend, but was actually much more for me. A colleague teaches a class on loss. Most of their work centers on the loss of a close friend or family member, or a beloved pet. Still, the instructor has invited my in the past two years, because she understands that I too live with loss. When I spoke last year, I had just discovered Facebook and MySpace. I had also just start this blog. Thus, it was amazing to talk about my disease today. Even though I know the journey gets longer every day, I loved sharing my experiences because I do believe that narcolepsy (as much as I hate it) has saved my life. It has forced me to focus on myself and my true priorities.
I am handling my current exhaustion well. I am well-aware that I am functioning at half-speed at best, but I am more comfortable with that than ever. I know that many of my days are filled with mediocrity, yet that is far superior to one decent day followed by a month or two of misery. At least I can help students in limited ways, rather than being stuck at home. If that day does arrive, though, perhaps some of my friends at Narcolepsy Network will have worked out a cool way for me to still connect to other PWNs around the world. Okay, I must sleep before I fritter away another three hours.
Labels:
Balance,
Confusion,
Education,
Exhaustion,
Faith,
Frustration,
Honesty,
Narcolepsy,
Narcolepsy Network,
Relationships,
Technology
Sunday, April 12, 2009
Stunning Start
One year ago, I found myself struggling and lost in my handling of my narcolepsy. While I had clearly identified that I needed to make some changes at my job, I had yet to connect in a meaningful way with any other people with narcolepsy. I knew that living with this condition was difficult, but had no context for my situation. Was it normal to still feel this run down? How much did my doctor honestly know? Where any of my other "health problems" connected to my narcolepsy? The list of these questions was endless, but where could I even start to get answers. Worst of all, I knew I needed to process my own feelings and frustrations, but I felt like burdening my wife would be wholly unfair. She is my partner, lover, and best friend, but she could not be the sole repository of my stress and anxiety. I also had my Men's Group, but was finding it harder and harder to discuss my struggles, because narcolepsy sounds ridiculous when you explain it - I am tired during the day, and I don't sleep well at night. It invites the suggestions of getting more sleep, and the sympathetic replies of "I am tired too." Then, in a whirlwind week, everything changed.
First and foremost, I "discovered" Facebook and MySpace. It may sound insane for a forty-year-old to claim that social networking saved his life, but I am living proof. Since my daughter's school was moving to one-to-one computing in the middle school (each student has her or his own computer) and because of my own interest in using technology in the classroom, I thought I should start understanding what social networks truly were. I played with my profiles for a few days, but then I wondered if other PWNs could be found in either one. Turns out, I found support groups in both locations. The Facebook group Narcolepsy Support Group became my home away from home. I think there were around 400 members when I joined. As of today, the group is a single person away from 1000 members. Touching base with other PWNs had a huge impact.
In fact, the great irony is that the member who literally joined next on Facebook was a former student at my school. I could not believe it. I sent her a message on Facebook, feeling horribly awkward. But, within hours, we were trading emails since she too had narcolepsy, as did other family members. She has subsequently become a major factor in helping to lead the local MOONS-MN support group. So, Facebook not only put me in contact with other PWNs, but also provided me with my first face-to-face interaction with other PWNs.
The best was yet to come, though. The same motives that drew me to Facebook also had me curious about blogging. Since I was planning to use it in my classroom, I thought I might start a blog. After looking for other blogs about narcolepsy, I realized that only a handful of PWNs were sharing their stories. But, it was also clear that writing about it was helping the PWN authors and their readers. Thus, Narcoleptic Knights was born - one year ago today. I love that this one year anniversary has fallen during my break week at school. I have been privileged to blog every day over this hiatus. It has reminded me how important it is for me to write about my condition. Whether I am up or down, I need this release.
I know that some of my depression and stress over the last few months has been the limited blogging that I have done. Seeing that string of months with only two or three posts per months saddens me. I know that I was doing other things that needed to be done, but it reminds me of how far I must go to find more equilibrium in my life. It also blows my mind that I could go 3-4 months writing only a handful of posts and still average a post every three days for the year. I do remind my students regularly that I am overly verbose.
The final piece that makes this blog so important to me is that so many people have come here to read it. In one year, Narcoleptic Knights has had 891 unique visitors from 33 different countries and at least 47 regions/states within the U.S. There have been over 3300 total visits and still about a quarter of the visits come from new visitors. I am awed and honored that people from around the globe would spend even a few seconds looking at what I have said here. I do hope that I have helped some of them. At the same time, I want you all to know that you have helped me (and continue to help me). By visiting this site, you motivate me to continue writing. I have mentioned it here before, but I have never been good at keeping a journal. I always start strong, but rarely do I even make it a month when I try to regularly record my thoughts. But, because of the visitors to this blog, I have not only reached the one year mark, but also I am heading into the second year of Narcoleptic Knights with more fervor than ever. Whether you have left many comments, one comment, or simply read a portion of a post, please know that I am eternally grateful. I often avoid injecting my religious faith into this space, but it is not lost on me that today is Easter (at least it is for Roman Catholics and Protestants). The fact that we are honoring Christ re-born on the day that my blog reaches it one year mark (and it is a huge piece of my re-birth) is a gloriously wonderful thing. Thank you all for being a part of my life.
First and foremost, I "discovered" Facebook and MySpace. It may sound insane for a forty-year-old to claim that social networking saved his life, but I am living proof. Since my daughter's school was moving to one-to-one computing in the middle school (each student has her or his own computer) and because of my own interest in using technology in the classroom, I thought I should start understanding what social networks truly were. I played with my profiles for a few days, but then I wondered if other PWNs could be found in either one. Turns out, I found support groups in both locations. The Facebook group Narcolepsy Support Group became my home away from home. I think there were around 400 members when I joined. As of today, the group is a single person away from 1000 members. Touching base with other PWNs had a huge impact.
In fact, the great irony is that the member who literally joined next on Facebook was a former student at my school. I could not believe it. I sent her a message on Facebook, feeling horribly awkward. But, within hours, we were trading emails since she too had narcolepsy, as did other family members. She has subsequently become a major factor in helping to lead the local MOONS-MN support group. So, Facebook not only put me in contact with other PWNs, but also provided me with my first face-to-face interaction with other PWNs.
The best was yet to come, though. The same motives that drew me to Facebook also had me curious about blogging. Since I was planning to use it in my classroom, I thought I might start a blog. After looking for other blogs about narcolepsy, I realized that only a handful of PWNs were sharing their stories. But, it was also clear that writing about it was helping the PWN authors and their readers. Thus, Narcoleptic Knights was born - one year ago today. I love that this one year anniversary has fallen during my break week at school. I have been privileged to blog every day over this hiatus. It has reminded me how important it is for me to write about my condition. Whether I am up or down, I need this release.
I know that some of my depression and stress over the last few months has been the limited blogging that I have done. Seeing that string of months with only two or three posts per months saddens me. I know that I was doing other things that needed to be done, but it reminds me of how far I must go to find more equilibrium in my life. It also blows my mind that I could go 3-4 months writing only a handful of posts and still average a post every three days for the year. I do remind my students regularly that I am overly verbose.
The final piece that makes this blog so important to me is that so many people have come here to read it. In one year, Narcoleptic Knights has had 891 unique visitors from 33 different countries and at least 47 regions/states within the U.S. There have been over 3300 total visits and still about a quarter of the visits come from new visitors. I am awed and honored that people from around the globe would spend even a few seconds looking at what I have said here. I do hope that I have helped some of them. At the same time, I want you all to know that you have helped me (and continue to help me). By visiting this site, you motivate me to continue writing. I have mentioned it here before, but I have never been good at keeping a journal. I always start strong, but rarely do I even make it a month when I try to regularly record my thoughts. But, because of the visitors to this blog, I have not only reached the one year mark, but also I am heading into the second year of Narcoleptic Knights with more fervor than ever. Whether you have left many comments, one comment, or simply read a portion of a post, please know that I am eternally grateful. I often avoid injecting my religious faith into this space, but it is not lost on me that today is Easter (at least it is for Roman Catholics and Protestants). The fact that we are honoring Christ re-born on the day that my blog reaches it one year mark (and it is a huge piece of my re-birth) is a gloriously wonderful thing. Thank you all for being a part of my life.
Labels:
Balance,
Blogging,
Education,
Gratitude,
Hope,
My story,
Narcolepsy,
Support,
Technology
Saturday, April 11, 2009
Suddenly Sunny
I awoke this morning with a bit more spring in my step. I am still exhausted, and I need to work on balance, but the world seems brighter today. It doesn't hurt that the sun is out in Duluth today, but the bigger reason is that once again fellow people with narcolepsy have lifted my spirits. Last night, we went to see my mother and my grandmother. It was good to spend time with them, but everyone is also struggling. My grandmother's health has both of them concerned and on edge. Thus, my stress level was higher when we returned to the hotel around 9 PM. Fortunately, I remember that a friend of mine that I met through the Narcolepsy Network had planned to chat with me on Yahoo Messenger. Sure enough, she was there, but soon others joined us.
The webmaster for the Narcolepsy Network is fantastic, as a person and as a web guru. As a result, he has been able to garner the assistance of a number of quality individuals around the country to help moderate the forums and to improve the site. I feel lucky to have been included. Thus, my "brief" chat with a friend transformed into a full-fledged planning session involving people in Minnesota, Michigan, Washington (state), and Ohio. We were discussing ways to promote and aid local/regional narcolepsy support groups by providing them space on the overall Narcolepsy Network site. The group out in Portland, Oregon (and Vancouver, Washington) already has material up in this fashion for their P.A.N.E.S. & V.A.N.E.S. group. The idea is absolutely thrilling because it will raise the profile of these groups (including the MOONS group I help organize), and those groups will also be more prone to connecting with each other.
Beyond the support group planning, we also discussed ways to make the overall site and forums better. While it is a team effort, the driving force IS our webmaster. Seriously, the guy is a saint (and a rocking musician). One element that he raised last night is trying to get the doctor who runs our Minnesota group onto the forums on a regular basis. I think it is brilliant. She is likely one of the best neurologists in the country, particularly for sleep medicine. But, more impressively, she genuinely cares for PWNs and wants to do everything she can to help them, even when they are not her patients. Hopefully, she will be open to establishing a presence on the Narcolepsy Network Online Forums. We shall see.
Even these stunning ideas did not raise my spirits the most. The best thing about this impromptu meeting was the love and respect that my friends sent my way. They have all been working like mad to improve elements of the Narcolepsy Network sites, while I have done a few things here and there. Rather than be frustrated that I am not doing more, all of them were overwhelming grateful for what I have done. They all get that I am doing the best I can while balancing family, work, volunteering, and my own health. Since all of them are also PWNs, they also know that the condition ebbs and flows. Each person was overjoyed that I was "back" in more of a groove, rather than chastising me for what had not been accomplished. I am certainly blessed to have both the Narcolepsy Network and these quality people in my life.
The webmaster for the Narcolepsy Network is fantastic, as a person and as a web guru. As a result, he has been able to garner the assistance of a number of quality individuals around the country to help moderate the forums and to improve the site. I feel lucky to have been included. Thus, my "brief" chat with a friend transformed into a full-fledged planning session involving people in Minnesota, Michigan, Washington (state), and Ohio. We were discussing ways to promote and aid local/regional narcolepsy support groups by providing them space on the overall Narcolepsy Network site. The group out in Portland, Oregon (and Vancouver, Washington) already has material up in this fashion for their P.A.N.E.S. & V.A.N.E.S. group. The idea is absolutely thrilling because it will raise the profile of these groups (including the MOONS group I help organize), and those groups will also be more prone to connecting with each other.
Beyond the support group planning, we also discussed ways to make the overall site and forums better. While it is a team effort, the driving force IS our webmaster. Seriously, the guy is a saint (and a rocking musician). One element that he raised last night is trying to get the doctor who runs our Minnesota group onto the forums on a regular basis. I think it is brilliant. She is likely one of the best neurologists in the country, particularly for sleep medicine. But, more impressively, she genuinely cares for PWNs and wants to do everything she can to help them, even when they are not her patients. Hopefully, she will be open to establishing a presence on the Narcolepsy Network Online Forums. We shall see.
Even these stunning ideas did not raise my spirits the most. The best thing about this impromptu meeting was the love and respect that my friends sent my way. They have all been working like mad to improve elements of the Narcolepsy Network sites, while I have done a few things here and there. Rather than be frustrated that I am not doing more, all of them were overwhelming grateful for what I have done. They all get that I am doing the best I can while balancing family, work, volunteering, and my own health. Since all of them are also PWNs, they also know that the condition ebbs and flows. Each person was overjoyed that I was "back" in more of a groove, rather than chastising me for what had not been accomplished. I am certainly blessed to have both the Narcolepsy Network and these quality people in my life.
Labels:
Blessings,
Education,
Excitement,
Exhaustion,
Family,
Friends,
Gratitude,
Hope,
MOONS,
Narcolepsy,
Narcolepsy Network,
Support,
Technology
Wednesday, March 25, 2009
Midnight Madness
Once again, I am up far later than a PWN should be. Oops! Life continues to surge at a break neck pace, yet I am surviving. My daughter had a horrid cold at the beginning of last week, and I promptly caught it. I came home early from school last Wednesday and immediately got worse. Somehow, I managed to limp through Thursday and Friday, not only getting to school, but also teaching decently. It was stunning to realize that I could feel as bad as I did, but still get to work and perform adequately. I must admit that I felt a bit of pride in being able to do that. Of course, I also questioned my sanity, particularly on Friday when my morning dose of cold medication did not play nicely with my stimulant. The chest pains and racing heart had me a little worried, but I got through it.
This week has been better from a health perspective, but today was difficult personally and professionally. We have been discussing a change to our cell phone policy and our iPod/mp3 player policy for the past two years. March 24 was finally the day of our "listening session" to hear faculty feedback. Needless to say, no one tends to be more biting in their criticism than disgruntled teachers. I facilitated two sessions and felt pummled by the negative feelings of many of my colleagues. I can understand resistence to the ideas proposed, but many people went well beyond that and vented about "technology" in general. It hurt because our committee has put so much time and energy into our work, but also because I personally believe that integrating more technology into the schoolwide curriculum is vital to helping our students prepare for the future that awaits them. To have a number of colleagues disparage that idea saddened me. It also made me question whether my school is the right place for my daughter, or for me.
This week has been better from a health perspective, but today was difficult personally and professionally. We have been discussing a change to our cell phone policy and our iPod/mp3 player policy for the past two years. March 24 was finally the day of our "listening session" to hear faculty feedback. Needless to say, no one tends to be more biting in their criticism than disgruntled teachers. I facilitated two sessions and felt pummled by the negative feelings of many of my colleagues. I can understand resistence to the ideas proposed, but many people went well beyond that and vented about "technology" in general. It hurt because our committee has put so much time and energy into our work, but also because I personally believe that integrating more technology into the schoolwide curriculum is vital to helping our students prepare for the future that awaits them. To have a number of colleagues disparage that idea saddened me. It also made me question whether my school is the right place for my daughter, or for me.
Labels:
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Thursday, December 25, 2008
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.
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.
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Sunday, June 8, 2008
Finally Accepting My Own Advice
For years I have encourage students to write when they are upset, or anxious, or depressed, or angry. I have harped on the therapeutic values of writing and promoted the value of writing daily - both for academic improvement and mental relief. In the midst of all of that, I often felt like the biggest hypocrite ever to lead a class. While my charges often found my suggestion fulfilling, I never found a way to practice what I preached. Certainly, I attempted to journal at times. I also have a decent collection of writing with which I tinkered sporadically. But, writing on a consistent and frequent basis managed to elude me - until now.
This blog has become a vital component of my sanity. I knew that even before this past week, but my lack of output over the last seven days has been unbearable. While I realize that my bubbling animosity has a multitude of causes, a portion of it definitely grew out of my unfulfilled need to express myself. Unpacking my anxieties has become a vital piece of my routine. I am also amused that my need to be "more selfish" has finally resulted in at least one tangible (and definable) activity. I do plan to discover more elements of my life that are specifically mine, but it is incredible to realize that I need to post here simply to be at peace with myself.
Yes, I worried all week about what my "regular readers" might think if I didn't post soon, but even more powerfully, I knew that I needed to write about my week simply to stay sane. What strikes me as most humorous about this realization is my own attitude about technology. If anyone had told me three months ago that blogging would become as important in my life as finding a correct diagnosis or feeling supported by my men's group, I would have laughed in your face. While I have often actively supported the use of technology in the classroom, I have never fully understood the impact that computers can have on an individual's life. Part of my ability to "cope" with narcolepsy is directly linked to computing. I have NEVER been able to journal, now suddenly it is a core piece of me. Why? Now, I know that people are reading it. I want to help others by putting my thoughts out on the web, but the primary purpose of this writing is for me. For the first time in my life, I am selfish in a way that it vital and necessary. I needed to know that others would read it. My vanity LOVES that my words matter. Even better, some people actually leave comments. My words have touched others. Again, a portion of the thrill is helping someone, but another is that I matter.
Blogging is therapy for me. It is the very thing that I have driven home in writing classes for years, but could never accomplish for myself. Best of all, I know that I would continue to do it now, even if every one of the amazing people who visit my blog disappeared. I need this. If nothing else, like my good friend from La Mancha, it is here that I tilt with windmills. Nothing (short of a major medical miracle) will ever remove narcolepsy from my life. This Erewhon (spell it backwards if you are unfamiliar with the word or Butler's book - you do need to flip the w and the h) of the Internet provides me the place that I can be free of its grasp. I can rage against it and embrace it. I can cry and laugh and fall and rise. Quixotically, I can be the knight I have always seen in my mind's eye, doing battle with the dragon (or Darth) that vexes me to no end. I need this outlet and claim it as my own!
A wonderful post script in my crazy narcoleptic world - although this posting is also dated for Sunday, June 8, I did not finish it until June 9. I fought my Xyrem for at least a half hour, once again attempting to do too much (balance may yet find me), but eventually succumbed to sleep. I wrote the final paragraph and a half of the penultimate paragraph on Monday. That said, I love that it happened that way because I know I never would have hit on those final thoughts as my body was shutting down. Blessing and curse - narcolepsy!
This blog has become a vital component of my sanity. I knew that even before this past week, but my lack of output over the last seven days has been unbearable. While I realize that my bubbling animosity has a multitude of causes, a portion of it definitely grew out of my unfulfilled need to express myself. Unpacking my anxieties has become a vital piece of my routine. I am also amused that my need to be "more selfish" has finally resulted in at least one tangible (and definable) activity. I do plan to discover more elements of my life that are specifically mine, but it is incredible to realize that I need to post here simply to be at peace with myself.
Yes, I worried all week about what my "regular readers" might think if I didn't post soon, but even more powerfully, I knew that I needed to write about my week simply to stay sane. What strikes me as most humorous about this realization is my own attitude about technology. If anyone had told me three months ago that blogging would become as important in my life as finding a correct diagnosis or feeling supported by my men's group, I would have laughed in your face. While I have often actively supported the use of technology in the classroom, I have never fully understood the impact that computers can have on an individual's life. Part of my ability to "cope" with narcolepsy is directly linked to computing. I have NEVER been able to journal, now suddenly it is a core piece of me. Why? Now, I know that people are reading it. I want to help others by putting my thoughts out on the web, but the primary purpose of this writing is for me. For the first time in my life, I am selfish in a way that it vital and necessary. I needed to know that others would read it. My vanity LOVES that my words matter. Even better, some people actually leave comments. My words have touched others. Again, a portion of the thrill is helping someone, but another is that I matter.
Blogging is therapy for me. It is the very thing that I have driven home in writing classes for years, but could never accomplish for myself. Best of all, I know that I would continue to do it now, even if every one of the amazing people who visit my blog disappeared. I need this. If nothing else, like my good friend from La Mancha, it is here that I tilt with windmills. Nothing (short of a major medical miracle) will ever remove narcolepsy from my life. This Erewhon (spell it backwards if you are unfamiliar with the word or Butler's book - you do need to flip the w and the h) of the Internet provides me the place that I can be free of its grasp. I can rage against it and embrace it. I can cry and laugh and fall and rise. Quixotically, I can be the knight I have always seen in my mind's eye, doing battle with the dragon (or Darth) that vexes me to no end. I need this outlet and claim it as my own!
A wonderful post script in my crazy narcoleptic world - although this posting is also dated for Sunday, June 8, I did not finish it until June 9. I fought my Xyrem for at least a half hour, once again attempting to do too much (balance may yet find me), but eventually succumbed to sleep. I wrote the final paragraph and a half of the penultimate paragraph on Monday. That said, I love that it happened that way because I know I never would have hit on those final thoughts as my body was shutting down. Blessing and curse - narcolepsy!
Sunday, May 4, 2008
Aggravation
I wanted to be relaxed today. I wanted to not worry about my energy level, to get something done around the house, to be on track. But, I am not. Instead, I am out of sorts. In fact, I am torn. One of the best things I have found in the past year is Facebook. I do use MySpace too, but find Facebook more accessible, more well run, and more user friendly. My largest frustration of late, in terms of my narcolepsy, had been having no one with whom I could discuss narcolepsy from an "inside" perspective. After setting up a Facebook account, I searched for narcolepsy groups on a whim. The results blew me away. Many groups existed, and the largest Narcolepsy Support Group had over 400 members. I decided to visit and within moments joined.
A similar group exists on MySpace, and between the two I have already made new friends, connected with a number of other narcoleptics, traded stories and even helped others. I know that finding these groups will continue to be monumental in my journey to find peace and acceptance with this condition. I already love social networking for many reasons, but these groups afford me an opportunity I could have no other way. I can stay in contact with a plethora of people all of whom are on the same journey with the same disease. We each experience narcolepsy in our own way, but the peace of mind that comes out of reading even one post in these groups is better than a life time of therapy. I adore Facebook for this alone.
As an educator, I always look for ways to bring meaningful aspects of my life into my teaching. Given my experience with Facebook, and the fact that many students already have Facebook and MySpace accounts, I immediately being to scheme for ways to use Facebook in my classroom. Certainly, it would be cool to have a method of letting students know about assignments while they are on Facebook. It could also be an amazing portal for students to connect with peers around the world. What better way to help students understand our global world than letting them discuss books and ideas and concepts with people throughout the world. I am sure that more ideas will percolate to the surface if I do pursue this plan. But, I know I will meet with resistance. Facebook and MySpace and social networking in general has a PR problem. Parents, educators and adults in general find social networking sites at best a waste of time, at worst something dangerous and frightening. Whether it is fears of pedophiles or concerns about cyber bullying or any of a number of issues ranging from screen time to exposure to evil ideas, many people would likely question my wisdom if I were to propose this idea.
My hope had resided in Facebook's policies. They clearly state that sites attacking individuals and dangerous behavior will not be tolerated. I wanted to take that at face value (no pun intended), but knew I would still meet resistance. Then, a Facebook group popped up that not only attacked a colleague at my school, but also contained clear slander. I reported it, and the group was down within hours. My heart soared because Facebook clearly meant what they said. That was Tuesday morning. Unfortunately, the last six days have greatly undermined my initial enthusiasm.
Two more slanderous groups have appeared, as well as material on a previous group (which also attacks another of my peers). I have reported all three. Two of them in multiple ways. For one group the clock since my report is now well over 120 hours. The other two reports are more recent, but one is nearing 36 hours. I realize that the administrators of Facebook have thousands of issues. I also know that I may appear to be the one who has a "problem" because I am filing all of these reports. I certainly don't expect them to evaluate content. Negatives sites are a fact of life, but when reports are filed on sites that are clearly in violation of Facebook's policies, I do expect that timely action will take place. Now, the two recent sites have been reported during the weekend, but the 120 plus hours for the third group is inexcusable.
What recourse do I have, though? Quit Facebook? No, that only hurts me. File more reports? I can't through the groups, and I would guess that multiple emails would also lead to my removal from the network. My bigger aggravation in all of this has two branches. One, if I was worried about the possibility of using Facebook in my classroom before, I am close to pushing the thought completely out of my head. Since there appears to be no way to ensure that a negative page about a student would come down in any timely way, I doubt that the administration would ever give me permission to try. Worse, the people putting up these groups, and undermining these cool possibilities (not to mention ruining the life of my colleague) are former students. I am responsible for teaching them (or perhaps NOT teaching them) that behaving in such a way is unacceptable. One of the reasons that I want to use Facebook in class would be to help my students understand how to be responsible citizens of online communities. Instead, I fear that I am simply helping to produce more computer users who think it is fun and silly to spread lies and rumors. Of course, that tends to be the message of our society as a whole, so why should I expect my former students to be any different.
In the end, I will continue to wrestle with all of this. I love Facebook, but want to quit in anger. That is not the time to decide. I also know that I give too much energy to minor issues like this. Negative sites are a reality, and I will have to deal with them whether or not I get permission to use Facebook in the classroom. Still, I have a friend whose life is being eaten away at because other people are not truthful and honest. That is horrid. No one deserve to have vicious lies spread in this way. I do hope that I can find a way to help other students become good online citizens. I just worry that those I didn't reach in the past will ruin my chance to make a difference in the future.
A similar group exists on MySpace, and between the two I have already made new friends, connected with a number of other narcoleptics, traded stories and even helped others. I know that finding these groups will continue to be monumental in my journey to find peace and acceptance with this condition. I already love social networking for many reasons, but these groups afford me an opportunity I could have no other way. I can stay in contact with a plethora of people all of whom are on the same journey with the same disease. We each experience narcolepsy in our own way, but the peace of mind that comes out of reading even one post in these groups is better than a life time of therapy. I adore Facebook for this alone.
As an educator, I always look for ways to bring meaningful aspects of my life into my teaching. Given my experience with Facebook, and the fact that many students already have Facebook and MySpace accounts, I immediately being to scheme for ways to use Facebook in my classroom. Certainly, it would be cool to have a method of letting students know about assignments while they are on Facebook. It could also be an amazing portal for students to connect with peers around the world. What better way to help students understand our global world than letting them discuss books and ideas and concepts with people throughout the world. I am sure that more ideas will percolate to the surface if I do pursue this plan. But, I know I will meet with resistance. Facebook and MySpace and social networking in general has a PR problem. Parents, educators and adults in general find social networking sites at best a waste of time, at worst something dangerous and frightening. Whether it is fears of pedophiles or concerns about cyber bullying or any of a number of issues ranging from screen time to exposure to evil ideas, many people would likely question my wisdom if I were to propose this idea.
My hope had resided in Facebook's policies. They clearly state that sites attacking individuals and dangerous behavior will not be tolerated. I wanted to take that at face value (no pun intended), but knew I would still meet resistance. Then, a Facebook group popped up that not only attacked a colleague at my school, but also contained clear slander. I reported it, and the group was down within hours. My heart soared because Facebook clearly meant what they said. That was Tuesday morning. Unfortunately, the last six days have greatly undermined my initial enthusiasm.
Two more slanderous groups have appeared, as well as material on a previous group (which also attacks another of my peers). I have reported all three. Two of them in multiple ways. For one group the clock since my report is now well over 120 hours. The other two reports are more recent, but one is nearing 36 hours. I realize that the administrators of Facebook have thousands of issues. I also know that I may appear to be the one who has a "problem" because I am filing all of these reports. I certainly don't expect them to evaluate content. Negatives sites are a fact of life, but when reports are filed on sites that are clearly in violation of Facebook's policies, I do expect that timely action will take place. Now, the two recent sites have been reported during the weekend, but the 120 plus hours for the third group is inexcusable.
What recourse do I have, though? Quit Facebook? No, that only hurts me. File more reports? I can't through the groups, and I would guess that multiple emails would also lead to my removal from the network. My bigger aggravation in all of this has two branches. One, if I was worried about the possibility of using Facebook in my classroom before, I am close to pushing the thought completely out of my head. Since there appears to be no way to ensure that a negative page about a student would come down in any timely way, I doubt that the administration would ever give me permission to try. Worse, the people putting up these groups, and undermining these cool possibilities (not to mention ruining the life of my colleague) are former students. I am responsible for teaching them (or perhaps NOT teaching them) that behaving in such a way is unacceptable. One of the reasons that I want to use Facebook in class would be to help my students understand how to be responsible citizens of online communities. Instead, I fear that I am simply helping to produce more computer users who think it is fun and silly to spread lies and rumors. Of course, that tends to be the message of our society as a whole, so why should I expect my former students to be any different.
In the end, I will continue to wrestle with all of this. I love Facebook, but want to quit in anger. That is not the time to decide. I also know that I give too much energy to minor issues like this. Negative sites are a reality, and I will have to deal with them whether or not I get permission to use Facebook in the classroom. Still, I have a friend whose life is being eaten away at because other people are not truthful and honest. That is horrid. No one deserve to have vicious lies spread in this way. I do hope that I can find a way to help other students become good online citizens. I just worry that those I didn't reach in the past will ruin my chance to make a difference in the future.
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