Narcolepsy Support Group

A few years ago I wrote an article on dealing with narcolepsy. We are all aware of the limitations we encounter every day with narcolepsy. I had compiled a lot of information from other pwn's on what they felt was the worst part of their narcolepsy. While it was informative I could see that the very nature of narcolepsy is such that it is easy for us to dwell on all the negatives, but many have lost sight of any positives.

So in my glass half full way, I wrote about what I had learned from narcolepsy. If you don't mind, I'm going to share some of it with you. It's lengthy, and if you don't have the energy to read it, that's okay. For those that read it, I say adopt the AA slogan of "Take what you like and leave the rest."

- - - - - - - - -
March 2007

We do need to acknowledge that all is not black. I too feel that I would not have near the compassion I have for others, if I hadn't gone through this.

I have met so many wonderful, loving, and strong PWN's that I consider like family. Heck, almost better than family.

We could give the argument that I just would have met other people, just as wonderful, loving and strong. Not necessarily. Who knows what my shallow narcolepsy-free life would have been like. LOL Maybe I would have been another Paris Hilton.

Interestingly, this has made me realize that another question I need to ask myself is what do I have yet to learn.

There are no guarantees in this life. No one is guaranteed a life that is unblemished either from illness or circumstance. And while I believe there are many things I could have accomplished had I not had N, it is not in my best interest to dwell on those.

I must learn to appreciate each day for what it is. Just because this is the 21st century and the world seems to be spinning faster and faster around us with all this technology, there is something to be said for keeping things simple.

I have learned that less is more. I am clearing my home of any and all clutter. No more will I hang on to things because I might get around to doing them some day. I truly do not need a lot of 'things' to be happy.

I have learned that life is filled with frustrations, and it is up to me and only me how I deal with those frustrations. I have no power over others and I am not responsible for their perceptions. If I am to have some measure of happiness, I must learn that when it comes to who I am as a person, that I am a good person. I just happen to live with an extremely difficult illness.

Our society judges people by their accomplishments, the size of their homes, the size of their pocketbooks, the number and kinds of their possessions. Are those the parameters we really should be judged by? Unless we can get past those things, we will be unhappy.

No one can expect from us more than we humanly can do. Unfortunately in this imperfect world, people DO expect more from us, but for me to have any kind of inner peace, I must ignore what others think I should be doing, or how I do it. I choose to limit my interaction with those who judge me unfairly. I am not here to please others. I am honestly doing as much as I possibly can, and given my limitations these days, I have to be okay with that or I will be miserable.

I learned a big lesson many years ago. Try this yourselves. Take everything you know about yourself, every aspect of your illness and how it impacts your life. Take everything you know about the kind of person you are, the kind of spouse, child, parent, friend. Take all of that and put it on your best friend.

Your best friend, in your mind, is now living your life. Look at her/him. How do you feel about them? I bet you're pretty amazed that they even get out of bed each day. You probably have a lot of compassion for them. You see how they keep striving. You see their struggles. You see how there are ignorant people who judge them wrongly. Yet they persevere. Don't you just want to throw an arm around them or give them a hug and say, you go matey! But wait a minute. That is really YOU were looking at!

I hope I explained that the way I meant it. But it should give you a new found appreciation for yourself. It's like looking at yourself with new eyes.

I know that I am my own worst enemy. I must learn to be as good to myself as I am to others. I must learn acceptance of what is. We have N. We could just as easily have been in a horrible accident and become a quadriplegic. Or any number of other things. I must stop saying "If only . . ." It is entirely up to me how I perceive myself and I do myself a great disservice if I yearn for what was, expect what will never be.

I must learn to see myself the way others see me.
Posted on 10/27/09, 01:10 pm