Living, Loving, Laughing

Daily, I thank God for the blessings in my life. I need to do that so I don't dwell on the frustrations of my narcolepsy. So much has been given to me that is denied to others (people with narcolepsy and those without it). I have an amazing wife, a wonderful daughter, dear friends, a good job and lots of support. Too often, those simple basics are withheld from others. In the many online narcolepsy forums that I visit, it saddens me when I learn of yet another person with narcolepsy who is neglected by family members, or worse chastened by them for being "lazy." Because of my insane drive that pushed my body well beyond its limits for years, I rarely am confronted about my "lack of energy." Even when I am, it is with a tone of grief, rather than one of disdain. Just today, another colleague asked if I would ever be able to return to full-time teaching. She looked genuinely sad when I said I would not. Even people who support me just can't fathom that this condition doesn't "get better." I will always be TIRED; that is my reality.

My medications do mitigate the fatigue, but nothing can make it go away. My school year has been going significantly better than I can every remember. Thus, my mood is up, and I have a spring in my step. Those who don't fully understand my condition immediately assume that I must be "feeling better." While I am enjoying my job far more than I have in the last few years, I do NOT feel better. I am simply more at peace with feeling rotten. And, that situation is okay. I have a full life. As I stated above, my blessings are overflowing. I just need to get use to the look of pity in peer's eyes when they learn that my narcolepsy is not lessening.

I also need to diminish the guilt I periodically feel when I read or hear the stories of other people with narcolepsy. No two people can ever honestly compare pain, and I do believe that God gives us no more than we can handle. That said, I get so sad when I see what others must endure at the hands of the disease that we share. So many have it far worse than I do - at least it seems that way to me. But, my guilt helps no one. Instead, I try to think of ways that I can be present for them. Often, that is a message or a kind word. Other times, words fail me, leading me to prayer. There is such power in connecting with other people with narcolepsy.

One more great thrill from the last few weeks has been my interactions with other people on the various narcolepsy forums. I know my heart beat quickens when I think of the national conference is only days away. I will be incredible. The weirdest part is knowing that the speakers will be incredible, but I just want to talk to other people with narcolepsy in a face-to-face setting.

I am sincerely grateful for this journey, every step of it. I want to embrace everything that is this world, including my health (highs and lows). Living and loving and laughing are the core priorities of my life. I look forward to seeing how it all turns out in the end.