Category Archives: Empathy

Whirlwind Week

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

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

Advertisements

3 Comments

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

Excessive Exhaustion

Although I seem to be handling my struggles better, I find it infuriating that my narcolepsy seems worse than ever. I know that my condition moves in cycles, and I am clearly in a down turn at this time. Still, getting up in the morning is more difficult, and my evening peter out far sooner than they did last year. I am scared that narcolepsy is progressive. I realize that my amphetamine dose is likely less effective, but I also doubt that the drug’s impact has curtailed to the extent that I am once again experiencing fogginess in my thinking and the possibility of micro-naps. Even today, my drive home from school felt much closer to the automatic behavior rides I remember from my pre-diagnosis days.

Adding to my concern is that I am at a loss as to where I should turn medically. Since my sleep doctor did not even both to come into the room during my last visit, I doubt he will be much help. While he definitely understands the basics of narcolepsy, he is a pulmonary doctor whose true focus is obstructive sleep apnea. What I need is a neurologist who is well versed in sleep. Sadly, such physicians are few and far between. The “premier” group in the Minneapolis and Saint Paul area apparently has a narrow view of narcolepsy. If you are not text book, then you do NOT have narcolepsy. Since I am functioning less well on my current medicinal routine, I highly doubt that “losing” my diagnosis would do me much good. I boggles my mind that I am NOT going to a doctor because I am afraid that the doctor might tell me I do not have narcolepsy. I KNOW that I have narcolepsy, but the fact that I personally have talked to people who have been to this group worries me enough that I am not going to take the risk.

In many ways my current situation underscores the ridiculous reality that far too many PWNs face – we have a disease that does not “fit” in the contemporary structure of medicine. Most specials focus on a specific body system, but sleep medicine covers an enormous range. Obstructive sleep apnea alone involves the throat, the lungs, the brain, and even the heart and other organs when untreated. So, one can find sleep doctors who are ENTs, pulmonary specialists, neurologists, and even cardiovascular physicians. And, the essential mechanism of OSA is fairly well understood. Narcolepsy on the other hand is an autoimmune disease in which an environmental trigger has caused a genetic predisposition to activate, resulting in the body attacking small cells in the hypothalamus. Thus, those same sleep doctors who treat OSA periodically get PWNs as patients. But, few of them understand narcolepsy (which is still in its infancy in terms of medical insight). The situation only worsens when one realizes that the limited number of PWNs and the extreme nature of our drugs (class II stimulants and sleep aides like sodium oxybate) provide little to no financial incentive for any doctor considering sleep as a primary area of interest. The one small ray of hope is that the recent discovers about narcolepsy may spark significant interest among immunologists – now that it is clear that narcolepsy is an autoimmune disease.

None of that rambling helps my overly sleepy state, however. I remain proud of myself for accepting my situation and for pushing ahead with the best attitude that I can muster. Nonetheless, I abhor that mowing my small lawn today completely did me in. That comes on the heels of a Saturday and Sunday that saw me accomplish little because I was drained from talking to my wife and from confronting another parent. All of that happened on Saturday, but I needed all of Sunday to recover. In fact, I would argue that some of my current lethargy is also linked to my mental and emotional exertion on Saturday. While I know that I am doing the best that I can, the rational side of my brain is screaming about how pathetic the reality is. Yet, I have no choice, but to breath and to accept my disability.

I am looking forward to the Narcolepsy Network conference this weekend. While my relationship with the organization feels shaky at this time, I am thrilled to be going somewhere where my “norm” IS the “norm.” Sitting in a room, or even having a casual conversation with a fellow PWN, is tremendously empowering. It reminds me that I am not insane. It also underscores for me that this disease is awful, and yet it is also manageable. Granted, I need to keep working to accept my limits, but I can be productive even with narcolepsy impeding me much of the time.

Leave a comment

Filed under Emotions, Empathy, Exhaustion, Frustration, Healthcare, Honesty, Loss, Medical Research, Medication, Narcolepsy, Narcolepsy Network

Groggy Gray Grumpies

>I awoke today feeling like I had been run over by a car. There seems to be no definitive reason for this. I have not slept on any bathroom floors. I took both doses of Xyrem. I laid off exercising excessively for the last two days because I was feeling run down. Why in the world would my body be this sore? Then, I remembered – I tried to DO things this week. By that, I mean I had numerous meetings and worked on financial issues in our house. I also tried to do some housework and even spent quality time with my wife and my daughter. The most unnerving part is that all of that “work” resulted in me being even more wiped out AND the following:

  • House is messier today than it was on Monday
  • Lawn is still not mowed
  • I need to make two phone calls – one to set up yet another meeting
  • Our office is still not cleaned
  • Our finances are not yet up to date
  • Oodles of things need to get done for my job
  • Oodles of things need to get done for MOONS-MN
  • Oodles of things need to get done for our house – window stain, door paint, room touch up, blinds hung
  • My wife is depressed, and more from me would help
  • My daughter needs us to run errands and help packing for an overnight

I often find the hardest thing about narcolepsy is letting go of the shame and guilt that a list like this one can foster. I KNOW that I did a decent job this week, but it scares the hell out of me that my progress during the week resulted in everything getting further behind. I would love to pretend that I will just “work harder,” but that is not possible. In fact, pushing too hard is what got me to this morning when I awoke feeling like I had been run over. It is a strange, sad cycle. And, if I am not careful, I can let it eat me alive. My baseline has always been an all or nothing approach. I throw myself into things, or I completely surrender. Unfortunately, that approach has never worked out super well. And, when it gets right down to it, it won’t in this moment either. I will NOT get that list above done today, tomorrow, next week, or possibly even next year. I also will NOT give up my wife, my daughter, my house, my job, my health, or my sanity.

My favorite insight about life is that it is paradoxical at its core. There is always too much to do, that will never get done, and is always completed. If that makes little sense and complete sense, welcome to the world of paradox. Perhaps it is that one insight that lets my let go on days like today. I will not get all of those things, but eventually they will all get done (even if they don’t). And, obviously, reactions and emotions like mine today are not exclusive to narcolepsy. It exacerbates the severity of my fatigue and my ability to do things, but each person has her or his limitations. Which is my second favorite insight – pain and struggle can never be compared. None of us will ever know what is like to be another person and face her or his challenges. Even if I met another almost 41 year old, male, English teacher, two years into his diagnosis of narcolepsy. While we might have some similar experiences, I could never understand his struggles. Thus, the challenge is to make peace with the good and the bad within our own bodies and minds. At the same time, it sure helps to have others in your life who at least “get it” when it comes to your own struggles. Thanks for reading and thanks for letting me vent a little. It might just help something get done today.

2 Comments

Filed under Balance, Depression, Empathy, Exhaustion, Family, Friends, Frustration, Honesty, Hope, Humility, Insights, Narcolepsy, Relationships, Wisdom

>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!

1 Comment

Filed under Emotions, Empathy, Exhaustion, Frustration, Healing, Illness, Insights, Marriage, Narcolepsy, Wisdom

>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!

Leave a comment

Filed under Balance, Blessings, Empathy, Faith, Family, Honesty, Narcolepsy, Serendipity, Support, Wisdom

>Hope Happening Here

>Today, perhaps for the first time ever, my therapist could NOT stop smiling during our session. It was truly incredible. Of course, it might be that nearly everything I said at today’s session had a positive tone (or at least undertone). When I was thinking about today’s session, while at school yesterday, I felt nearly giddy. I look forward to therapy because talking out my issues grounds me. The difference last night was that I knew that I was bursting to let my therapist know how well things have been going. The sensation is incredibly odd.

As I left my therapy session, though, I realized what I was experiencing. For the first time in years, I am actually feeling hopeful. Even more importantly, it is not a “pie-in-the-sky” hope – believing that with just a few changes I will start doing yoga for an hour each day, or that I will tweak a couple of meds and be able to work full time again. Those thoughts aren’t even dreams, they are delusions. What is percolating inside me is – the belief that I will make a difference, the possibility that I can accomplish worthwhile tasks (even with a chronic condition), the reality that I am far more than a bizarre medical condition. I don’t know if anything feels quite this good.

As I mentioned above, I don’t see this moment as an end. If anything, it is the true beginning. Now, I can start to walk honestly with my disease and discover ways to honor it while still confronting it. Narcolepsy is a part of me, but it is certainly NOT all of me. In fact it isn’t a big percentage. It make keep my energy down, but my heart and soul and mind are MINE. And, this disease can have no part of them. I know that many dark days will be on my path, but I fear them less and less. I merely need to put one foot in front of the other, and I will continue to walk my path as best I can.

Perhaps one of the things that has given me the most hope in the last few months is communicating with other people with narcolepsy online. I had made such incredible friends throughout the world. It is a huge blessing for me. When I read about a woman in the United Arab Emirates struggling to find out about narcolepsy, or the young woman in Singapore who has taken control of her own life and medical condition, my spirits soar. Some people praise me for my kindness to them. I am honored and flattered by their praise, but even more so I am inspired by their courage and determination to face this disease and the societal scorn that can accompany it. Their journeys give my own even more purpose. At some level, having narcolepsy is worth all of its hassles purely so I can be lucky enough to know other people with naroclepsy.

1 Comment

Filed under Blessings, Education, Emotions, Empathy, Excitement, Honesty, Hope, Humility, Narcolepsy, Sharing, Therapy, Wisdom

>Depressing Dangers

>I find it fascinating how a weekend can spin on a dime. Yesterday was fantastic, while today is not. My day has been alright. I actually held to some scheduled times that I set for myself (which is progress), but my mid-afternoon and evening fell apart. In some ways I got swept up in “drama,” as my students would call it. Of course, the reality of the situations is far more than that. One of the ugliest aspects of narcolepsy is the depression that it can cause.

In recent days a friend (one of many I have met in online narcolepsy support groups) has written a few things that have me deeply concerned. She is definitely depressed. The disease alone can do that. Imagine the reality of it. Narcolepsy doesn’t allow you to sleep well (often even if you are one a medication to help you sleep). As a result you spend your entire day exhaust (often even if you take some type of stimulant). Beyond feeling exhausted, you might have cataplexy and lose control of certain muscles at times (making you feel clumsy and awkward), but even if you don’t have cataplexy, the fatigue drags at you. You can’t do everything that think think you should. Others wonder why you aren’t getting your work done. Many narcoleptics are called lazy by their colleagues and family. They are told to get more sleep or to drink some coffee. In many ways the disease is a nightmare. Narcoleptics look and (generally) act like able-bodied persons, but they actually have a debilitating disease. One that forces them to perform far below what they (and others) think should be the case. How could that cause depression?!?

My friend, though, has even more going on in her life. She recently moved in an attempt to get her life back on track. The move has left her in a new place with few friends. Worst of all, she is among the millions of U.S. citizens without health insurance. She is running out of narcolepsy meds and can’t see a doctor. Needless to say, I am worried.

One of her posts, though, caused another narcoleptic a great deal of stress. This second woman saw my friend’s post, and it cut this woman to the core. My friend’s post in my eyes is a cry for help, but due to events and stress in this other narcoleptic’s life, she saw it as counterproductive and giving up. Much angst ensued, including two other friends getting involved and responding with posts. In the end I wound up trading a number of messages directly to the narcoleptic woman who got so upset at my friend’s message. It still bothers her, but I think she simply appreciated being able to tell someone her story.

In all of the consternation, I kept reminding myself how fragile all of this is. Narcolepsy truly is an insane condition. I take drugs to help me sleep at night and others to help me stay awake during the day. That is wrong! It is a complete paradox. Even more amazing is the fact that so many narcoleptics fight like mad to continue to function. A good friend offered the thought to me that we narcoleptics have to have this condition. If we didn’t, we would wind up taking over the world. It sounds funny – until you meet other narcoleptics and realize how hard we all drive ourselves (and yet still feel inferior).

While all of this has been happening around my friend’s post, I also had the chance to read up on the life of this amazing sixteen year old, narcoleptic girl in Singapore. This young woman realized that something was wrong with her health, disregarded every message that she got that it was in her head, researched like mad on the Internet, read about narcolepsy, dialogued with a number of us online, made her own appointments with a sleep doctor, and eventually got diagnosed. She also managed to do this within a month or so. Yet, in the face of this, her parents still think that she is lazy. She is in trouble at school because she is not performing well academically (they allow her no excuses), and she thinks she is letting people down. How sad is that? For any sixteen year old to be that resourceful is amazing, but add in the fact that she has narcolepsy, and she should be receiving medals not insults.

I wish there was some way to explain to people that narcolepsy is incredibly hard. Even as I learn to live with it, I daily fight my own messages that I “should” be doing more. The fact of the matter is that without medication my brain function would be comparable to a non-narcoletic who had not slept for 72 hours. With medication it is better than that, but I am still wiped out most of the time. AND, my narcolepsy is not nearly as severe as others. It saddens me so that many of the narcoleptics that I know face scorn from the people closest to them – parents, siblings, friends. How is that just? I hope that all of the people who are on my mind tonight – my depressed friend, the upset woman who is my new friend, the two others who engaged in the dialogue, the young woman in Singapore – are all able to find some peace and strength in their lives. I am blessed to have the family and friends that I do. I am also fortunate to have a local support group that is growing stronger. Plus, I get to go to a national convention for narcoleptics in less than a month, or at least I think I do. Amid the other stressors today, I learned that my account on the Narcoleptic Network Online Community is not working. When I couldn’t log in, I tried to use the help functions, only to be told that “no member has that information.” So, I either did something very wrong, or it is some computer glitch. I sent off a couple of requests for help, but have heard nothing yet. Invariably, I am already blaming myself, and a part of my brain is convinced that I have gotten myself thrown out of the group before I ever got to go to the convention. While the thinking is completely irrational, it starts to sound pretty accurate as the depression creeps in. Let’s hope that I am totally wrong and am able to access my account again soon.

4 Comments

Filed under Blessings, Depression, Empathy, Frustration, Healthcare, Heroes, Loss, Narcolepsy, Rage