Happy New Year! It occurred to me today, as I drove around Saint Paul (and the Twin Cities) like a mad man, that I should spend some time reflecting on this past year. It is breathtaking to realize that one year ago I could feel hope slipping away yet again. In fact, as I entered January of 2008, I was sure that the stimulant I was on was not strong enough. Then, when I tried amphetamine for the first time, I was convinced the wheels had completely come off of the wagon. My hands began "sweating," and I found myself in a complete spiral. Somehow, I held things together, but I also missed my most school in January and February. The dyshidrotic eczema was driving me nuts, and I seriously thought that I might need to quit teaching. I also remained completely exhausted.
Even when I got my hands under control, I had a swollen testicle again and felt horribly run down. Still, the worst was yet to come. As February ended and March began, I found myself at a low water mark. I hated going to work and knew that my classes were toxic to me. I had started on my amphetamine, but my knees were in extreme pain. My weight was barely hovering at 150 pounds. And, with the start of the third trimester, I found myself completely lost. My schedule and pattern at school had changed and it took me three weeks to get my bearings. All of it had me beside myself. Then, we went to D.C. for the Fools Fest, and the worm turned.
Initially, I was convinced it was the end of the world. I could barely walk up the hill to the fields. I didn't even go to the fields on the second day. It was wonderful to see my friends from college, but I was depressed beyond belief. It looked like narcolepsy, or my body, or something was going to take ultimate from me too. Yet, as I returned from D.C., I seemed to have a little more hope. Perhaps it was seeing our friends, or maybe it was my deepest self getting fed up, or perhaps it was the arrival of spring, but I came home with a small fire in my belly.
The first piece of good news was that my knees were okay. I needed physical therapy, but I had been convinced something was torn. Then, I found Facebook and started this blog. Suddenly, I was discussing my narcolepsy and connecting with others. At school, I finally recognized how toxic my course load was and owned it. I came to terms that I would be unhappy for the rest of the year, and that made things lighter. I also turned my focus to the new course that promised to be much better for the 2008-2009 school year (and it has been). Finally, I began, for the first time in my life, to accept that I am a finite person. I can't be all things to all people. I must be content to do what my body allows.
As the school year ended, I finally got to a MOONS meeting. I signed up for the Narcolepsy Network. I got excited that MITY was approaching. At the same time, I had to confront again and again my tendency to overestimate how much strength I had. Ultimate remained frustrating, and I never did find a way to get back in shape. Eventually, I had to step away from ultimate. I still don't know if I will be able to play competitively again, but am much more at peace with that. I also had many dark days when I turned all of my ire inward. But in processing those moments, I found more and more ways to forgive myself.
These last few months have been incredible. While there is still so much that I must learn about myself, about narcolepsy, about how to find peace, I know that I am on the right path. The most important lesson I have learned in the past year is that I can't control a vast majority of my world, but I can control my reaction to the world around me. I need to roll with the realities of my life. I need to breathe. I need to take each day, one moment at a time. Hopefully, as good as the end of 2008 has been, it is only the beginning. The more content I am, the more I am able to embrace the world.
Wednesday, December 31, 2008
Tuesday, December 30, 2008
Tremendous Teammates
I thoroughly enjoyed my four days in Duluth, although the drive home was a tad taxing. We were in snow and on snow covered roads for most of the trip. Fortunately, we got home safely. One element of the entire Duluth trip (that surprised me) was how often I invoked the name of my two teaching colleagues. I know that my attitude and approach to life is significantly better. Simply put, I am coming to terms with what it means to have narcolepsy. That said, though, I know that this year has been one of my best teaching experiences because I work with two amazing individuals.
Both of my co-teachers place their students ahead of everything else. They are full of compassion and truly listen to what students have to say. At the same time, they demand excellence from every students. Both know that students have a wide range of abilities, and they lavish praise upon each one, but want to push each student to her or his best. That means even more work for the teacher, but my teammates know those efforts will make a massive difference in helping these young women and men maximize potential. Beyond all of this, they love to have fun. Our classroom constantly resonates with laughter and joy.
The gentleman who handles social studies recently became a father. I know that he will be amazing as a parent. He has lived a tough life, but constantly looks for ways to learn from his experiences. He is also a tremendous practitioner of sound educational theory. He scientifically approaches every lesson and works to match his material to his students' developmental levels. Best of all, he holds himself to the high standards that he asks of his students. Justice permeates everything that he does. He even puts his own money on the line to help his students understand the importance of justice.
Our religion teacher is perhaps even more remarkable. She is still in her 20s, but has the wisdom of a 50 or 60 year old. Her calm, sage presence draws students to her. And, she holds each student in her heart and in her prayers. Her warmth and friendliness work in stunning unison with the rigorous demands that she also puts on the students. She pushes them, but also feeds their souls. I know that these young women and men will live significantly richer lives because they had her as their teacher. Best of all, she provides our ninth graders collegiate content in a form they can grasp.
I also adore that both of my colleagues see writing as the most important thing that any of can do in our classroom. In fact I would be hard pressed to say which of us is the most demanding within our grading of the writing. Regardless, our students are getting a great education because we do work together. I feel incredibly blessed to work with these two teachers. It remains a struggle to do even this course with my narcolepsy, but the knowledge that I have these two standing with me gives me strength.
Both of my co-teachers place their students ahead of everything else. They are full of compassion and truly listen to what students have to say. At the same time, they demand excellence from every students. Both know that students have a wide range of abilities, and they lavish praise upon each one, but want to push each student to her or his best. That means even more work for the teacher, but my teammates know those efforts will make a massive difference in helping these young women and men maximize potential. Beyond all of this, they love to have fun. Our classroom constantly resonates with laughter and joy.
The gentleman who handles social studies recently became a father. I know that he will be amazing as a parent. He has lived a tough life, but constantly looks for ways to learn from his experiences. He is also a tremendous practitioner of sound educational theory. He scientifically approaches every lesson and works to match his material to his students' developmental levels. Best of all, he holds himself to the high standards that he asks of his students. Justice permeates everything that he does. He even puts his own money on the line to help his students understand the importance of justice.
Our religion teacher is perhaps even more remarkable. She is still in her 20s, but has the wisdom of a 50 or 60 year old. Her calm, sage presence draws students to her. And, she holds each student in her heart and in her prayers. Her warmth and friendliness work in stunning unison with the rigorous demands that she also puts on the students. She pushes them, but also feeds their souls. I know that these young women and men will live significantly richer lives because they had her as their teacher. Best of all, she provides our ninth graders collegiate content in a form they can grasp.
I also adore that both of my colleagues see writing as the most important thing that any of can do in our classroom. In fact I would be hard pressed to say which of us is the most demanding within our grading of the writing. Regardless, our students are getting a great education because we do work together. I feel incredibly blessed to work with these two teachers. It remains a struggle to do even this course with my narcolepsy, but the knowledge that I have these two standing with me gives me strength.
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Monday, December 29, 2008
Dalliance Day
What a good, but low-key (and weird), day. I got up and definitely felt better. Of course, my bowels did remind me all day that I was not completely out of the woods. Still, the fever and aches were gone - hooray! I had a small breakfast in the hotel lobby and then spent the morning doing things online. Eventually, we all headed out to see my grandmother. We had a nice lunch with her. Invariable, our manic genes all came out in someways. A few years ago, my mother, my grandmother, my sister, and I ALL tried to get things out to "help" get a meal ready. The kitchen we were in was literally 3 feet by 8 feet. Needless to say, 4 adults in that space doesn't work well. Today, it was mostly my mom and grandmother trying to out do each other, but I know that my sister and I both still feel the compulsion.
Lunch was great, though. It was leftovers from the party that I missed yesterday. My aunt came over when we finished. It was wonderful to see her too. After another hour of chit-chat, my dad, my sister, my daughter, and I headed out so grandma could do some "things" with her daughters. We headed to a local shopping spot in Duluth. It is actually a renovated brewery (Fitger's). My sister, my daughter, and I had a glorious time browsing the stories. We even did some window shopping outside (which is funny because the temp was below freezing) that lead us to some excellent chocolate. My dad called up a high school and college buddy. They decided to meet at a restaurant next to the shopping center.
The only "bad" part about my dad's plan is that it easily could have (and did) upset my mother. Their relationship constantly perplexes me. Like me, my mom seems to have extreme anxiety and tends to want to "take care" of everything. My dad, on the other hand, tends to be oblivious to how much he can upset her, or at other times purposely tries to antagonize her. Fortunately, by the time we picked up my mom, she had decided that the restaurant would be a good place to eat. Plus, my sister and I figured that she too would love to she their mutual friends. That is another trait I know that I share with my mother - the inability to allow oneself to enjoy a situation.
The dinner was good, but toward the end things got dicey. My daughter was completely out of place and wanted to head back to the hotel. Plus, my dad and one of his buddies kept talking to her, which she was not so keen about. Gratefully, we did get out of there before she completely melted down. Back at the hotel, I went swimming with her and had fun just hanging out. The hotel we are at has s'more cookouts every night. A s'more is marshmallows and chocolate between two graham crackers. Usually, you heat the marshmallows over hot coals. Not wanting to stand outside tonight, my daughter and I decide we would heat the marshmallows in the microwave in our room. Now, we are enjoying a quiet evening in the room.
Throughout the day, I did feel a bit ill still. I also knew that my narcolepsy was dragging me down some. But, I rolled with the moments and stayed present with each event. In many ways, I did very little, but I also did tons of things. I connected with people - online, in person, over the phone. I had fun in active and passive ways. I rested. I exercised (walking and swimming). It was a simple day and a great day. Far too often, those two are treated as opposites, when they are far better as synonyms. We head home tomorrow, and while I expect more tension (particularly from my parents), I also know that the journey home will be fun. I am looking forward to seeing my wife. I am also excited and hopeful about where this next year will take us.
Lunch was great, though. It was leftovers from the party that I missed yesterday. My aunt came over when we finished. It was wonderful to see her too. After another hour of chit-chat, my dad, my sister, my daughter, and I headed out so grandma could do some "things" with her daughters. We headed to a local shopping spot in Duluth. It is actually a renovated brewery (Fitger's). My sister, my daughter, and I had a glorious time browsing the stories. We even did some window shopping outside (which is funny because the temp was below freezing) that lead us to some excellent chocolate. My dad called up a high school and college buddy. They decided to meet at a restaurant next to the shopping center.
The only "bad" part about my dad's plan is that it easily could have (and did) upset my mother. Their relationship constantly perplexes me. Like me, my mom seems to have extreme anxiety and tends to want to "take care" of everything. My dad, on the other hand, tends to be oblivious to how much he can upset her, or at other times purposely tries to antagonize her. Fortunately, by the time we picked up my mom, she had decided that the restaurant would be a good place to eat. Plus, my sister and I figured that she too would love to she their mutual friends. That is another trait I know that I share with my mother - the inability to allow oneself to enjoy a situation.
The dinner was good, but toward the end things got dicey. My daughter was completely out of place and wanted to head back to the hotel. Plus, my dad and one of his buddies kept talking to her, which she was not so keen about. Gratefully, we did get out of there before she completely melted down. Back at the hotel, I went swimming with her and had fun just hanging out. The hotel we are at has s'more cookouts every night. A s'more is marshmallows and chocolate between two graham crackers. Usually, you heat the marshmallows over hot coals. Not wanting to stand outside tonight, my daughter and I decide we would heat the marshmallows in the microwave in our room. Now, we are enjoying a quiet evening in the room.
Throughout the day, I did feel a bit ill still. I also knew that my narcolepsy was dragging me down some. But, I rolled with the moments and stayed present with each event. In many ways, I did very little, but I also did tons of things. I connected with people - online, in person, over the phone. I had fun in active and passive ways. I rested. I exercised (walking and swimming). It was a simple day and a great day. Far too often, those two are treated as opposites, when they are far better as synonyms. We head home tomorrow, and while I expect more tension (particularly from my parents), I also know that the journey home will be fun. I am looking forward to seeing my wife. I am also excited and hopeful about where this next year will take us.
Sick Sad Sunday
Apparently, when your spouse gets sick, it means you can potentially get the same thing. Whatever messed up my wife's stomach on December 26 got me too. I spent all day yesterday feeling horrid. Thankfully, I am much better today. My bowels are still dicey, but at least I feel like I can eat something. Also, I don't ache everywhere. I think the most frustrating thing was that even extra strength acetaminophen did not seem to help - yuck!
The bright spot in the day, though, is that I simply gave into the sickness. My grandmother was having a large gathering of family. While I was sad to miss it, I didn't feel bad about that. Nor did I feel rotten about spending a day in bed. I "could've" tried to do schoolwork, but I know I would not have been focused. I simply chose to lay down and read a book. That was good for me too. As I have said so often lately, even a year ago, I might have tried to fight through the illness. But, I know enough now to realize that being somewhere absolutely miserable is not helpful to anyone, let alone to me.
Plus, I will get to see some of the folks over the next day or two. My sister, my daughter, my parents, and I are still in Duluth until tomorrow. It should be fun to have a few more low key days. I think I am also enjoying taking smaller doses of my stimulants right now. It is definitely making me more relaxed and low key. Of course, I remain convinced that I will need to return to nearly full doses when school re-starts in a week. But, that is seven days a way. I plan to enjoy my break until then!
The bright spot in the day, though, is that I simply gave into the sickness. My grandmother was having a large gathering of family. While I was sad to miss it, I didn't feel bad about that. Nor did I feel rotten about spending a day in bed. I "could've" tried to do schoolwork, but I know I would not have been focused. I simply chose to lay down and read a book. That was good for me too. As I have said so often lately, even a year ago, I might have tried to fight through the illness. But, I know enough now to realize that being somewhere absolutely miserable is not helpful to anyone, let alone to me.
Plus, I will get to see some of the folks over the next day or two. My sister, my daughter, my parents, and I are still in Duluth until tomorrow. It should be fun to have a few more low key days. I think I am also enjoying taking smaller doses of my stimulants right now. It is definitely making me more relaxed and low key. Of course, I remain convinced that I will need to return to nearly full doses when school re-starts in a week. But, that is seven days a way. I plan to enjoy my break until then!
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Saturday, December 27, 2008
Quiet Calm
Occasionally, I am lucky enough to realize how great my life is. Yes, I have a chronic illness. Yes, many things that I loved to do have been "taken" from me. Yes, I all too often can't be the husband, dad, son, brother, friend, teacher, athlete, man, or person that I want to be. But, I am blessed. I have a good life. My partner loves me despite my many flaws. The young woman we are raising continually blows my mind with her brilliance, wisdom, and compassion. I also have tons for friends, a job I love, and innumerable joys that dancing in and out of my life.
Today has been a great day to reflect on all of that. My wife feels much better and her stomach thing truly appears to be a 24-hour bug. We enjoyed a lazy morning of getting ready for our trip to Duluth. The ride up was also enjoyable. I had rich, earnest conversations with the love of my life and my parents. Even when we arrived in Duluth and my parents began acting like petulant teens, the Bed and Breakfast we are at is one of my favorite places in all the world. Then, we had Sammy's Pizza (yum, but I do need to stop eating gluten again SOON) and had a lovely night with my grandmother, who is nearing ninety.
Now, I am in the sitting room of the B & B. My wife is resting upstairs, my daughter is having fun with my dad, I just had a lovely cup of mint tea, and many dear friends sent me notes on Facebook. My mother (oddly, but not surprisingly) is cleaning and organizing things in the B & B. It's who she is. I do hope to chat with her soon about mental health, but tonight would not be a good time. I am sure she has had some brandy, and she is furious with my dad because of something that happened when they left Portland. Hopefully, they will both enjoy each other's company tomorrow.
Maybe, what I am most grateful for tonight is that I continue to activity work to have a healthy mental outlook. So much of what I see in my mother, I also know is in me. But, I work daily to challenge those traits and to let go of the compulsion to "take care" of the world. I do hope that talking to her will get her to consider therapy and medication, but I feel grounded enough to know that I can't control what she does. I can only control my reaction. Both my parents have been driving me nuts tonight, but I still salvaged my evening. I turned my attention and energy to things that matter to me, rather than spending it on their problems. Ironically, their actions and behaviors (irritating as they are) also qualify as gifts to me. I continue to learn from them, even at forty. Granted, I am learning how NOT to act, but it is a gift nonetheless.
Today has been a great day to reflect on all of that. My wife feels much better and her stomach thing truly appears to be a 24-hour bug. We enjoyed a lazy morning of getting ready for our trip to Duluth. The ride up was also enjoyable. I had rich, earnest conversations with the love of my life and my parents. Even when we arrived in Duluth and my parents began acting like petulant teens, the Bed and Breakfast we are at is one of my favorite places in all the world. Then, we had Sammy's Pizza (yum, but I do need to stop eating gluten again SOON) and had a lovely night with my grandmother, who is nearing ninety.
Now, I am in the sitting room of the B & B. My wife is resting upstairs, my daughter is having fun with my dad, I just had a lovely cup of mint tea, and many dear friends sent me notes on Facebook. My mother (oddly, but not surprisingly) is cleaning and organizing things in the B & B. It's who she is. I do hope to chat with her soon about mental health, but tonight would not be a good time. I am sure she has had some brandy, and she is furious with my dad because of something that happened when they left Portland. Hopefully, they will both enjoy each other's company tomorrow.
Maybe, what I am most grateful for tonight is that I continue to activity work to have a healthy mental outlook. So much of what I see in my mother, I also know is in me. But, I work daily to challenge those traits and to let go of the compulsion to "take care" of the world. I do hope that talking to her will get her to consider therapy and medication, but I feel grounded enough to know that I can't control what she does. I can only control my reaction. Both my parents have been driving me nuts tonight, but I still salvaged my evening. I turned my attention and energy to things that matter to me, rather than spending it on their problems. Ironically, their actions and behaviors (irritating as they are) also qualify as gifts to me. I continue to learn from them, even at forty. Granted, I am learning how NOT to act, but it is a gift nonetheless.
Friday, December 26, 2008
Family Frenzy
My parents are here. Generally, that is a good thing, but this evening, my mother won't stop moving. It is great that someone is doing all of the cleaning, but I wish she could let herself relax. I must admit, however, that I am feeling minimal guilt about the situation. In the past, I think I might have tried to compete with her, but the reality is that I did WAY more than my share today. I had to do that and was proud to be able to help out, but making my kitchen spotless is simply not in the cards for me tonight. If my mom feels compelled to do it, more power to her. Actually, her actions confirm that I need to talk to her about her mental health, but that is a discussion for Duluth in a few days, or during a quiet walk next weekend.
Beyond my mother's manic antics, the day has been another eyeopener for me. I awoke this morning knowing that my wife might need me to do the shopping for our second Christmas. We had our own yesterday, opening our presents to each other and the ones from my wife's family. But, with my parents arriving last night, today was the celebration with them and my sister and her husband. Given that my wife had done virtually everything in the house during my medication holiday, I was more than willing to pick up some of the slack. Sadly, my wife needed way more from me than just some shopping. She has a stomach bug and spent the entire day in bed, other than a couple trips to vomit and a brief appearance during the gift exchange. My wife rarely gets sick like this, and part of the reason is that she abhors vomiting.
Thus, as I left on my shopping excursion, I knew I was likely doing the cooking today too. I chose again today to only take 10 mg this morning. I felt alert while driving and even decided to hit the 50% off sale at Target before getting the groceries. I got some great stuff there, then picked up some prescriptions, and finally hit the grocery store. All in all, my quick trip turned into a three hour adventure. I arrived home to a sicker wife and guests who might arrive at any moment. I got stuff put away and started cooking. My mom helped, and when my sister arrived, so did she. We eventually got everything prepared, and I took my second dose of 10 mg at 2 PM.
It blew my mind that I did all of that with only 10 mg of amphetamine. I know that I tend to respond well to "crisis" situations, but I am positive that seven days ago, 10 mg of amphetamine would have put me to sleep even if my house was on fire! This medication holiday thing borders on the miraculous. Granted, I was basically done for the day at 2 PM. Even with the second dose, I was exhausted. Still, I managed to be social and functional for the rest of the day. Since it is likely that I will be doing the driving tomorrow, I will need to consider 20 mg instead of 10 mg in the morning, but we are leaving at 1 PM, so maybe I will take 10 mg for the first dose and see how I feel. I know that my doses will need to go up when school starts again. I also know that I will definitely continue to take medication holidays. Now, if I can just find a way to stop having my mom do work!
Beyond my mother's manic antics, the day has been another eyeopener for me. I awoke this morning knowing that my wife might need me to do the shopping for our second Christmas. We had our own yesterday, opening our presents to each other and the ones from my wife's family. But, with my parents arriving last night, today was the celebration with them and my sister and her husband. Given that my wife had done virtually everything in the house during my medication holiday, I was more than willing to pick up some of the slack. Sadly, my wife needed way more from me than just some shopping. She has a stomach bug and spent the entire day in bed, other than a couple trips to vomit and a brief appearance during the gift exchange. My wife rarely gets sick like this, and part of the reason is that she abhors vomiting.
Thus, as I left on my shopping excursion, I knew I was likely doing the cooking today too. I chose again today to only take 10 mg this morning. I felt alert while driving and even decided to hit the 50% off sale at Target before getting the groceries. I got some great stuff there, then picked up some prescriptions, and finally hit the grocery store. All in all, my quick trip turned into a three hour adventure. I arrived home to a sicker wife and guests who might arrive at any moment. I got stuff put away and started cooking. My mom helped, and when my sister arrived, so did she. We eventually got everything prepared, and I took my second dose of 10 mg at 2 PM.
It blew my mind that I did all of that with only 10 mg of amphetamine. I know that I tend to respond well to "crisis" situations, but I am positive that seven days ago, 10 mg of amphetamine would have put me to sleep even if my house was on fire! This medication holiday thing borders on the miraculous. Granted, I was basically done for the day at 2 PM. Even with the second dose, I was exhausted. Still, I managed to be social and functional for the rest of the day. Since it is likely that I will be doing the driving tomorrow, I will need to consider 20 mg instead of 10 mg in the morning, but we are leaving at 1 PM, so maybe I will take 10 mg for the first dose and see how I feel. I know that my doses will need to go up when school starts again. I also know that I will definitely continue to take medication holidays. Now, if I can just find a way to stop having my mom do work!
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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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Wednesday, December 24, 2008
December Drifting
First and foremost, I must say that day five is definitely better than day four. I still don't know if it is the natural course of my med holiday, or the acupuncture, but I definitely had more energy today. The morning was still awful (I finally got out of bed at 9:30 AM because I HAD to leave the house at 10 AM), but once I got going, I felt okay. I was definitely still sleepy, and I kept my exertion to a minimum, but I did not dose as I had done during the first four days. I even managed to be decently helpful to my wife - which is good since I set her off while we were shopping (not so cool on Christmas Eve).
Beyond the med holiday, though, today is Christmas Eve. I often work to keep religion out of my blog, partly because I see narcolepsy as something that transcends religious affiliation, but also because I know that people of many faiths read this blog. While I know that my Roman Catholic faith is deeply a part of who I am, I would never want to proselytize here and offend someone of a different religious background, or someone who holds a more agnostic, or atheistic, or scientific view of the universe. Having said all of that, though, I must say Merry Christmas to those who are Christian (and Happy Hanukkah to those who are Jewish - though I know that it is a minor holiday I do think the efforts and actions of the Maccabees are way cool - and joyous Kwanzaa to those who celebrate and Happy New Year to those on a western calendar and remember that the whole month is Universal Human Rights Month, as well as World AIDS month).
I had a powerful experience at Mass tonight. First of all, my daughter sang in the youth choir. Not only was it amazing to watch her perform, but it was also wild to have other people see her who had not for some time. She is definitely a young woman in her appearance and her demeanor. It is both amazing and frightening. Beyond that, though, our priest gave his homily about Apollo 13 and "drifting in to nothingness" in space. His primary point was that the entire universe is the creation of Divine force. Whether it is God, or some other spiritual force, the reality is that the energy behind the universe is the same here and billions of light years away. All life and energy in the universe is good and blessed because it was all part of the plan. Earth is not the epicenter of it all. Rather, we are one small piece of the puzzle. It gave me a who new perspective on these past few days. As much as I felt like I was drifting along doing "nothing" in my stupor, the reality is that everything I do is part of something far greater than myself. I can no more drift away than I can disappear or levitate because God loves me always. It is a powerful message to consider.
I hope no one was offended by my theological turn here. While I hold strongly to my own faith, I truly believe that "truth" is in the midst of all beliefs and faiths. How could I, or any human, ever hope to know the mind of something or someone divine? All I know is that I am blessed to have such a good life, a job I enjoy, and a fantastic family. I hope that everyone else in this world has a chance to experience the joy that has been given to me. Narcolepsy is rotten, but I would not trade my life for anything, because the whole package is mine - the good and the bad. Peace be unto all of you!
Beyond the med holiday, though, today is Christmas Eve. I often work to keep religion out of my blog, partly because I see narcolepsy as something that transcends religious affiliation, but also because I know that people of many faiths read this blog. While I know that my Roman Catholic faith is deeply a part of who I am, I would never want to proselytize here and offend someone of a different religious background, or someone who holds a more agnostic, or atheistic, or scientific view of the universe. Having said all of that, though, I must say Merry Christmas to those who are Christian (and Happy Hanukkah to those who are Jewish - though I know that it is a minor holiday I do think the efforts and actions of the Maccabees are way cool - and joyous Kwanzaa to those who celebrate and Happy New Year to those on a western calendar and remember that the whole month is Universal Human Rights Month, as well as World AIDS month).
I had a powerful experience at Mass tonight. First of all, my daughter sang in the youth choir. Not only was it amazing to watch her perform, but it was also wild to have other people see her who had not for some time. She is definitely a young woman in her appearance and her demeanor. It is both amazing and frightening. Beyond that, though, our priest gave his homily about Apollo 13 and "drifting in to nothingness" in space. His primary point was that the entire universe is the creation of Divine force. Whether it is God, or some other spiritual force, the reality is that the energy behind the universe is the same here and billions of light years away. All life and energy in the universe is good and blessed because it was all part of the plan. Earth is not the epicenter of it all. Rather, we are one small piece of the puzzle. It gave me a who new perspective on these past few days. As much as I felt like I was drifting along doing "nothing" in my stupor, the reality is that everything I do is part of something far greater than myself. I can no more drift away than I can disappear or levitate because God loves me always. It is a powerful message to consider.
I hope no one was offended by my theological turn here. While I hold strongly to my own faith, I truly believe that "truth" is in the midst of all beliefs and faiths. How could I, or any human, ever hope to know the mind of something or someone divine? All I know is that I am blessed to have such a good life, a job I enjoy, and a fantastic family. I hope that everyone else in this world has a chance to experience the joy that has been given to me. Narcolepsy is rotten, but I would not trade my life for anything, because the whole package is mine - the good and the bad. Peace be unto all of you!
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Tuesday, December 23, 2008
Faithful Fatigue
When I got out of bed this morning (I hesitate to call the experience "waking up"), I was convinced that day four would be far worse than day three. The extreme effort of feeding three cats left me exhausted for the next hour. I eventually stumbled to the living room and promptly slept for the next hour and a half. Finally, I forced myself to shower around 10 AM. My wife and daughter had dental appointments at 11 AM. I didn't fall asleep in the lounge and did hang in through the other errands. Lunch was good too.
Then, at acupuncture, I was convinced I would fall asleep. I often hover in a near sleep state, but was positive that my body would simply give out today without the stimulants. Interestingly, I found my energy growing throughout the forty minutes that the needles were in me. Some of that might have been the electricity surging into the four needles in my lower legs, but that is not something new. I have been functional enough the rest of the day that I wonder if I have turned a corner on the withdrawal aspect. Certainly, tomorrow will be what it will be, but it is fascinating to ponder how all of this is impacting my body. I also must admit that part of me wishes I could stop the stimulants and just have an acupuncture treatment each morning. Of course that would be impossible, unless my amazing wife wants to spend two years learning how to be an acupuncturists on top of being the best medical writer and editor that I know (or that most, if not all, of the doctors who work with her know as well). The chiropractic appointment after the acupuncture also seemed to help.
That being said, it is incredible to realize how sleepy I truly am. Narcolepsy truly is a stunning condition. I know that my Xyrem doses knock me out at night. I get as good a sleep as I can most nights. That means that even with a chemically induced sleep, something is so out of whack that I remain exhausted for a majority of every day. It is humbling to be this dependent on drugs, but it is also good to understand what my body can and cannot do. As I continue to learn more about my condition, it will be fascinating to see where I will go and what life will bring me. Perhaps I will some day be one of those incredible PWNs who does not take stimulants, a person who is comfortable doing what his body allows rather than one who pushes himself to the extreme.
It will be cool to see what tomorrow brings. I need to go to the dentist at 10:30 AM. We also have a few more errands to run. Plus, we need to go to Mass at 4 PM. My daughter is singing in the pre-Mass caroling. I hope that I have a little more energy than I have had the past few days. At the same time, whatever I can muster will be just fine. I have no delusion that I will miraculously "recover." I also know that if I am even more wiped out, I will simply accept that. I have no ability to control the situation. It will also be good to recognize what five days without stimulants is like. That way, I will have more insight for the next medication holiday, which I hope will be similar in length. Who knows, I might even be able to do it during my spring break. I definitely am hoping that I can take a break for at least a week during the summer of 2009.
Then, at acupuncture, I was convinced I would fall asleep. I often hover in a near sleep state, but was positive that my body would simply give out today without the stimulants. Interestingly, I found my energy growing throughout the forty minutes that the needles were in me. Some of that might have been the electricity surging into the four needles in my lower legs, but that is not something new. I have been functional enough the rest of the day that I wonder if I have turned a corner on the withdrawal aspect. Certainly, tomorrow will be what it will be, but it is fascinating to ponder how all of this is impacting my body. I also must admit that part of me wishes I could stop the stimulants and just have an acupuncture treatment each morning. Of course that would be impossible, unless my amazing wife wants to spend two years learning how to be an acupuncturists on top of being the best medical writer and editor that I know (or that most, if not all, of the doctors who work with her know as well). The chiropractic appointment after the acupuncture also seemed to help.
That being said, it is incredible to realize how sleepy I truly am. Narcolepsy truly is a stunning condition. I know that my Xyrem doses knock me out at night. I get as good a sleep as I can most nights. That means that even with a chemically induced sleep, something is so out of whack that I remain exhausted for a majority of every day. It is humbling to be this dependent on drugs, but it is also good to understand what my body can and cannot do. As I continue to learn more about my condition, it will be fascinating to see where I will go and what life will bring me. Perhaps I will some day be one of those incredible PWNs who does not take stimulants, a person who is comfortable doing what his body allows rather than one who pushes himself to the extreme.
It will be cool to see what tomorrow brings. I need to go to the dentist at 10:30 AM. We also have a few more errands to run. Plus, we need to go to Mass at 4 PM. My daughter is singing in the pre-Mass caroling. I hope that I have a little more energy than I have had the past few days. At the same time, whatever I can muster will be just fine. I have no delusion that I will miraculously "recover." I also know that if I am even more wiped out, I will simply accept that. I have no ability to control the situation. It will also be good to recognize what five days without stimulants is like. That way, I will have more insight for the next medication holiday, which I hope will be similar in length. Who knows, I might even be able to do it during my spring break. I definitely am hoping that I can take a break for at least a week during the summer of 2009.
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Monday, December 22, 2008
Missing My Meds?
I am on day three of my med holiday. I actually posted it as my Facebook status and a number of PWNs commented. One of the best responses was, "why can't med holidays be as fun as they sound?" On one level I completely agree, but another friend posted that lazy days watching movies aren't all that bad. I certainly see that point too. Since this is my second attempt at a med holiday, I am still learning what they are like. I know that it is the right thing to do for my body, but I also know that day three was definitely tougher than day two. My first attempt in August was only two days long, and I knew that I would have some functionality during the first day, but that the second would be difficult. Sadly, I actually thought that day three might be better. I was wrong.
I have spent the day feeling physically ill, which I know is the withdrawal. It is amazing how even a theraputic dose of a medication can alter your biological baseline so drastically. I can't even imagine how hard it must be for an addict to get off of a drug. The other difficult aspect of the day has been my inability to stay alert for more than 30 minutes at a time. I have managed to do a few things around the house, but I have also crashed repeatedly. Some of that is also the withdrawal, but much of it is "untreated narcolepsy." I am humbled by how dependent I am on my amphetamine. Could I live without it? Yes, but I would not be able to teach - not even part-time. I also have spent the day wondering what it would be like to try driving like this. I have no intention of trying to do that, but it is frightening to realize that without my stimulants I could be completely dependent on others to transport me places.
The other side of that, though, is a gratefulness that I am able to use stimulants to have some level of functionality. I have a number of PWN friends who are unable to drive or work even with stumulants. Others can't find a stimulant that will work or that their bodies can tolerate. The insidious nature of this condition constantly stuns me. I am blessed that my narcolepsy has not completely undermined my life. I realize that it is all a matter of perspective, but I definitely know I would be struggling more if I had to let go of even more of what I "want" to do. Yes, I have lost much, but I am still able to do a job I love and help my family and my friends.
Of course, I certainly recognize that my narcolepsy can progress. Perhaps in another year or two (or month or two), I could reach a point where driving or working will not be possible. I hope that I will be able to accept those things with the same day-by-day approach that has allowed me to remain upbeat during the start of this journey. While I hope those things never come, I understand that much of that is out of my control. Narcolepsy will run its course. I just hope that I can maintain my own ability to accept what the disease brings and then make my own path and decisions.
Tomorrow will be fascinating because I have an acupuncture appointment scheduled. It will be the first time that I have acupuntuncture without a stimulant in my body. Even when I did acupuncture the first time (in 2005), I had methylphenidate and Concerta in my body. And, when I went off all of my meds before I got my narcolepsy diagnosis in 2007, I was going to Langford Chiropractic, but had not started acupuncture there yet. I am not sure if I had any acupuncture during my unintended med holiday last December - when Provigil became a non-option and I had no other stumulant. I will be interested to see how my body responds without the amphetamine.
I guess the final thing that has intriguied me these past three days is the fact that some PWNs do not take stimulants. Some don't need to take them - Xyrem does the trick on its own. Other, though, willingly forgo them. I can't do that, yet. I still want to work at my job. But, it is interesting to consider what I might be able to do without a stumulant. I know that once the withdrawal aspect ended, I would be more functional than I have been these past three days. The question would be, though, how much energy would I have? Perhaps the time will come when I can explore that. For now, I like the idea of stopping my meds for a time, then starting again. I know the amphetamine felt more effective after I did this for two days in August. It will be interesting to see what happens with my longer break this time. It is interesting that although I could not "feel" the effect, I definitely know that the amphetamine was working in DEcember because without it, there is no way I could have made it to work each day.
I have spent the day feeling physically ill, which I know is the withdrawal. It is amazing how even a theraputic dose of a medication can alter your biological baseline so drastically. I can't even imagine how hard it must be for an addict to get off of a drug. The other difficult aspect of the day has been my inability to stay alert for more than 30 minutes at a time. I have managed to do a few things around the house, but I have also crashed repeatedly. Some of that is also the withdrawal, but much of it is "untreated narcolepsy." I am humbled by how dependent I am on my amphetamine. Could I live without it? Yes, but I would not be able to teach - not even part-time. I also have spent the day wondering what it would be like to try driving like this. I have no intention of trying to do that, but it is frightening to realize that without my stimulants I could be completely dependent on others to transport me places.
The other side of that, though, is a gratefulness that I am able to use stimulants to have some level of functionality. I have a number of PWN friends who are unable to drive or work even with stumulants. Others can't find a stimulant that will work or that their bodies can tolerate. The insidious nature of this condition constantly stuns me. I am blessed that my narcolepsy has not completely undermined my life. I realize that it is all a matter of perspective, but I definitely know I would be struggling more if I had to let go of even more of what I "want" to do. Yes, I have lost much, but I am still able to do a job I love and help my family and my friends.
Of course, I certainly recognize that my narcolepsy can progress. Perhaps in another year or two (or month or two), I could reach a point where driving or working will not be possible. I hope that I will be able to accept those things with the same day-by-day approach that has allowed me to remain upbeat during the start of this journey. While I hope those things never come, I understand that much of that is out of my control. Narcolepsy will run its course. I just hope that I can maintain my own ability to accept what the disease brings and then make my own path and decisions.
Tomorrow will be fascinating because I have an acupuncture appointment scheduled. It will be the first time that I have acupuntuncture without a stimulant in my body. Even when I did acupuncture the first time (in 2005), I had methylphenidate and Concerta in my body. And, when I went off all of my meds before I got my narcolepsy diagnosis in 2007, I was going to Langford Chiropractic, but had not started acupuncture there yet. I am not sure if I had any acupuncture during my unintended med holiday last December - when Provigil became a non-option and I had no other stumulant. I will be interested to see how my body responds without the amphetamine.
I guess the final thing that has intriguied me these past three days is the fact that some PWNs do not take stimulants. Some don't need to take them - Xyrem does the trick on its own. Other, though, willingly forgo them. I can't do that, yet. I still want to work at my job. But, it is interesting to consider what I might be able to do without a stumulant. I know that once the withdrawal aspect ended, I would be more functional than I have been these past three days. The question would be, though, how much energy would I have? Perhaps the time will come when I can explore that. For now, I like the idea of stopping my meds for a time, then starting again. I know the amphetamine felt more effective after I did this for two days in August. It will be interesting to see what happens with my longer break this time. It is interesting that although I could not "feel" the effect, I definitely know that the amphetamine was working in DEcember because without it, there is no way I could have made it to work each day.
Labels:
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Sunday, December 21, 2008
December Delight
Somehow, I have managed to not post for 16 days! That is crazy. I definitely felt it in some ways, but in others, I was at peace just getting through the daily grind. I have enjoyed the last few weeks for a number of reasons, but first and foremost, I honestly feel like I balanced things well.
For years now, I have been trying to achieve some middle ground between overcommitment at work and the demands of being a husband and parent. Narcolepsy has obviously compounded the issue greatly, but in the past three weeks, I not only felt that I balanced things well, but also I felt good about what I was doing. That latter item is huge for me. Previously, when I have done a decent job of contributing at work and at home, I have never been able to recognize it in my gut. While logically I knew I had done the right thing, my emotions and psyche were often a wreck, focusing only on what I had left undone.
This time, the complete opposite is true. I know that I did not get to everything I might have liked, and I have plenty of work to do over my holiday break. But, I feel nothing but pride for the things that I did at home and at school during this time. Heightening that sense of fulfillment is the reality that physically I have been a mess in December - bad sinuses, extreme fatigue, rotten bowels. All of those are things that individually have derailed me for entire months. Somehow, I accepted all three, and did good work, and stayed on an even keel, and allowed myself to recognize all of that. I think that is a good sign.
Narcolepsy is insidious in its relentless presence, but I am finding more and more that by knowing my base line with it, I can negotiate ways to be effective in my job and in my home. I won't ever get to everything that my brain says I am supposed to do, but I also know that my brain is completely irrational when it comes to things like that. Even without narcolepsy, no one would be able to do what my brain (or my super ego as my colleague would say) thinks is achievable. Recognizing and internalizing that reality is a huge step for me.
I have much to learn about myself still, but this December has brought me tremendous insight. Beyond all of these successes is the fact that I managed to do small batches of work during many nights this past month. I need to make such practices more habitual, but it is a grand start. I am finally on break now, and while I want to rest and unwind, I also want to continue building my abilities to fragment my work into small pieces. Yet, I am affording myself the opportunity to do that later in the break. Right now, I am placing my health above everything.
I have known since October that I need to take a medication holiday from my amphetamine. That ways impossible until now; my wife and I could not afford to have me out of commission. Fortunately, I can take a break now. Yesterday was not bad, but today is definitely a struggle. Certainly, one element of this is withdrawal. It is also the narcolepsy. Nonetheless, I am doing a decent job of fighting the urge to berate myself for being inefficient for these five days. Again, who could be productive when your body is in the throes of withdrawal. The fact that I am both staying upbeat and getting one or two things done is miraculous. Hopefully, this break is good for my body and will help the amphetamine be a bit more effective when I restart it.
For years now, I have been trying to achieve some middle ground between overcommitment at work and the demands of being a husband and parent. Narcolepsy has obviously compounded the issue greatly, but in the past three weeks, I not only felt that I balanced things well, but also I felt good about what I was doing. That latter item is huge for me. Previously, when I have done a decent job of contributing at work and at home, I have never been able to recognize it in my gut. While logically I knew I had done the right thing, my emotions and psyche were often a wreck, focusing only on what I had left undone.
This time, the complete opposite is true. I know that I did not get to everything I might have liked, and I have plenty of work to do over my holiday break. But, I feel nothing but pride for the things that I did at home and at school during this time. Heightening that sense of fulfillment is the reality that physically I have been a mess in December - bad sinuses, extreme fatigue, rotten bowels. All of those are things that individually have derailed me for entire months. Somehow, I accepted all three, and did good work, and stayed on an even keel, and allowed myself to recognize all of that. I think that is a good sign.
Narcolepsy is insidious in its relentless presence, but I am finding more and more that by knowing my base line with it, I can negotiate ways to be effective in my job and in my home. I won't ever get to everything that my brain says I am supposed to do, but I also know that my brain is completely irrational when it comes to things like that. Even without narcolepsy, no one would be able to do what my brain (or my super ego as my colleague would say) thinks is achievable. Recognizing and internalizing that reality is a huge step for me.
I have much to learn about myself still, but this December has brought me tremendous insight. Beyond all of these successes is the fact that I managed to do small batches of work during many nights this past month. I need to make such practices more habitual, but it is a grand start. I am finally on break now, and while I want to rest and unwind, I also want to continue building my abilities to fragment my work into small pieces. Yet, I am affording myself the opportunity to do that later in the break. Right now, I am placing my health above everything.
I have known since October that I need to take a medication holiday from my amphetamine. That ways impossible until now; my wife and I could not afford to have me out of commission. Fortunately, I can take a break now. Yesterday was not bad, but today is definitely a struggle. Certainly, one element of this is withdrawal. It is also the narcolepsy. Nonetheless, I am doing a decent job of fighting the urge to berate myself for being inefficient for these five days. Again, who could be productive when your body is in the throes of withdrawal. The fact that I am both staying upbeat and getting one or two things done is miraculous. Hopefully, this break is good for my body and will help the amphetamine be a bit more effective when I restart it.
Friday, December 5, 2008
Conscience Comments
Somehow, another week has passed. I never understand how time can fly so quickly. The good thing is that I have been "healthier," although I was unable to fulfill the exercise goal. I do not feel guilty however. I will simply make exercising three times by next Friday a primary goal for this next week. I do know (quite clearly) that I did the absolute best that I could over this past week.
Beyond eating better, I definitely got tangible things done within our home. I changed a number of light bulbs, organized a number of music files, cleaned areas of the house, and did my normal chores. Even better, while I likely will never feel like I have done enough for school, I not only got things ready for the start of our new trimester, I even managed to correct the first quiz I gave within 24 hours of receiving the answers. I also know that my entire team felt "in synch" as we started our new material. That alone is enough to brighten my mood. One of the greatest accomplishments, though, is my own recognition of my need to stay on task when I am teaching in our classroom. I actually steered students back to the topic at hand throughout the week, fighting the urge to be tangential. Words truly can't describe how impressive that is for me.
Our current unit is an introduction to the concepts of conscience, leadership, and authority. We will actually study those theme throughout the trimester, but this first week has been incredible. We read the Orson Scott Card novel, Ender's Game, which I adore. Most of my students truly seem to enjoy it, thus far. It is perfect for our themes. Even better than the book, though, has been the chance to see these amazing, young women and men wrestling with the ethical and moral issues that we have placed before them during the past week. While we are all still human, greatly influenced by the culture of excess in the United States, I have appreciated seeing some of our teenagers make deeper and powerful connections about how they are both moved by their consciences to powerful acts and forced to betray those same values when certain social realities come into play.
Beyond the successes at school, I feel good about what has been happening in our home. My in laws left on Tuesday. It was wonderful to have them here. I definitely feel like I got the chance to grieve more over my brother-in-law. At the same time, with my wife's parents returning home, we have been able to re-establish some levels of normalcy for the first time in weeks. We have no gifts. Life is not in crisis. There is no dumpster in our driveway. I think we will make a few more strides this weekend when it comes to organizing the base elements of our lives - bills, financial records, storage of unneeded items. It thrills me that we could eventually find a minimalist way to exist.
At the same time, my brain continues to be overwhlemed by the multitude of things that I have left undone. Yet, my greatest source of pride this week is that I have not allowed that negativity to overwhlem me. Certainly, I have dark moments each day, but I acknowledge them and feel them, then I let them pass. No one could do the things that I "think" I am supposed to accomplish on any given day. Thus, as a forty-year-old with narcolepsy, I must forgive myself for not doing the impossible. I still feel overly run down and sick. My sinuses are definitely misbehaving. My anxiety and ill-health have not been the dominant element of my week, which is incredible. It is moments like this that I know I am "improving." A week like this, even eight months ago, would have sent me spirally. Radically, my primary feeling tonight is honestly elation. I am proud of the way I weathered the week. I am even more excited that I could feel this satisfied in a week when I was far from "on." I have no delusions that I will ever be "well," but I do know that I am capable of having weeks that are far more healthy than the one that has just passed. This journey of narcolepsy continues to amaze me. New discovers seem to lurk around each corner. While there are plenty that I have found less than pleasant, this new one was a welcome relief.
Beyond eating better, I definitely got tangible things done within our home. I changed a number of light bulbs, organized a number of music files, cleaned areas of the house, and did my normal chores. Even better, while I likely will never feel like I have done enough for school, I not only got things ready for the start of our new trimester, I even managed to correct the first quiz I gave within 24 hours of receiving the answers. I also know that my entire team felt "in synch" as we started our new material. That alone is enough to brighten my mood. One of the greatest accomplishments, though, is my own recognition of my need to stay on task when I am teaching in our classroom. I actually steered students back to the topic at hand throughout the week, fighting the urge to be tangential. Words truly can't describe how impressive that is for me.
Our current unit is an introduction to the concepts of conscience, leadership, and authority. We will actually study those theme throughout the trimester, but this first week has been incredible. We read the Orson Scott Card novel, Ender's Game, which I adore. Most of my students truly seem to enjoy it, thus far. It is perfect for our themes. Even better than the book, though, has been the chance to see these amazing, young women and men wrestling with the ethical and moral issues that we have placed before them during the past week. While we are all still human, greatly influenced by the culture of excess in the United States, I have appreciated seeing some of our teenagers make deeper and powerful connections about how they are both moved by their consciences to powerful acts and forced to betray those same values when certain social realities come into play.
Beyond the successes at school, I feel good about what has been happening in our home. My in laws left on Tuesday. It was wonderful to have them here. I definitely feel like I got the chance to grieve more over my brother-in-law. At the same time, with my wife's parents returning home, we have been able to re-establish some levels of normalcy for the first time in weeks. We have no gifts. Life is not in crisis. There is no dumpster in our driveway. I think we will make a few more strides this weekend when it comes to organizing the base elements of our lives - bills, financial records, storage of unneeded items. It thrills me that we could eventually find a minimalist way to exist.
At the same time, my brain continues to be overwhlemed by the multitude of things that I have left undone. Yet, my greatest source of pride this week is that I have not allowed that negativity to overwhlem me. Certainly, I have dark moments each day, but I acknowledge them and feel them, then I let them pass. No one could do the things that I "think" I am supposed to accomplish on any given day. Thus, as a forty-year-old with narcolepsy, I must forgive myself for not doing the impossible. I still feel overly run down and sick. My sinuses are definitely misbehaving. My anxiety and ill-health have not been the dominant element of my week, which is incredible. It is moments like this that I know I am "improving." A week like this, even eight months ago, would have sent me spirally. Radically, my primary feeling tonight is honestly elation. I am proud of the way I weathered the week. I am even more excited that I could feel this satisfied in a week when I was far from "on." I have no delusions that I will ever be "well," but I do know that I am capable of having weeks that are far more healthy than the one that has just passed. This journey of narcolepsy continues to amaze me. New discovers seem to lurk around each corner. While there are plenty that I have found less than pleasant, this new one was a welcome relief.
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