Narcolepsy: Coping With Who You Are

I have been thinking alot about my life here lately. All the obstacles I have overcome, and the things I have been through to get where I am now. The most significant thing to ever happen to me was to be diagnosed as a Narcoleptic.

My life was hard. There was always something wrong with me. We just didn’t know what. Eventually, I was just chalked up as crazy, and if you get enough people telling you your nuts, you start to believe it. But as it turns out, I was never crazy. I was just unique. That is the short version of a long drawn out process anyhow.

Initially getting the diagnosis of Narcolepsy was really hard on me. It came at a really treacherous time in my life. It took me a long time to accept all of this. The term ” I reject your reality and substitute my own” comes to mind. I was seriously in denial. Once I accepted this version of myself though, I came to realize that there was nothing wrong with me. So I have Narcolepsy. So what? I’m not DAMAGED. I’m not BROKEN. I consider it an alternative to normal mundane life. I am so significantly more interesting than alot of people I know. (Seriously. Some people are soooo boring…)  I have an entire view of the world that others wouldn’t normally consider. I imagine alot of people with alot of different disabilities can say this about themselves in one way or another also.

Recently someone on the Narcolepsy Network forums brought up the subject of learning to cope. I thought about this, and thought about my life and the drastic changes I have made in the last ten years since I was diagnosed. I put alot of thought into my reply, and I am going to share that with you now.

“I think the most important part of learning to cope is understanding that it is not going to happen over night. For me it took YEARS. Sadly there are no magic words for any of us and its a different process for us all. When we are growing up we all have expectations of what our life is going to be, and when we are faced with a diagnosis like this, In a sense we Mourn our own dreams. Our lives will never be what we thought they were going to be. It’s totally normal to do this.
So when you are first diagnosed you go through this process of at first being happy because you finally know what is wrong, but the heaviness and reality of it set in. This is where the Kübler-Ross Model of stages of grief can for all intents and purposes used as an example of what we go through… And just like the grief of death, it can take different lengths of time for anyone. It’s not just getting a diagnosis that is the hard part… Its accepting the reality of your limitations and the responsibility of taking care of yourself.

Here is my personal process in a nutshell:

  • Denial: I have gotten through life so far without drugs and help. I don’t need them now. This diagnosis isn’t that important and I can continue business as usual….
  • Anger: Narcolepsy affects such a small number of the population! Why did I get tapped? And in my particular case… If its genetic then why in my HUGE family am I the only one? (though years later, there are now five and counting I started a trend I guess!)
  • Bargaining: Ok I get it I have to take meds and go to bed, but not tonight, cuz its girls night out, or there is a show on tv, or my family is in town, I can always catch up later. (umm…. right)
  • Depression: Well we al know what this is. Some of us can’t drive. can’t do certain jobs, etc… We are afraid of being judged by our friends, made fun of, ostracized, we might even develop different personality traits to protect ourselves. ( ex: “learning how to not laugh” is very common. Most of us are very sarcastic in nature because of this or we might purposely recall and relive bad parts of our lives in our minds to counter act the funny. This is the part where you would isolate yourself also, And where this forum comes in very handy.) My Depression was bad and there were other non narcolepsy related key factors* included that made it much worse. I literally lost my dang mind. There are about 4 years of my life where I only remember bits and pieces…..
  • Acceptance: I don’t know how this happened. Or when. Those 4 years went by, and I suddenly just realized one day: Hey, I am ok and I have been for a while. Cool.

So where do we go from here?

For some of us, our dreams are gone. And its sad. I will never be a tattoo artist. It would only take one person to say something stupid and I would end up with a big permanent line drawn across some one as I fall to the ground. This is one of many possibilities that I had to let go of. I now put that creativity into other avenues of my life.

For some of us, Our dreams just need a bit of tweaking. Maybe take school in smaller steps, get creative with how you do things, and learn how to work on a schedule that is ok for you. Getting others to learn how to accept you also.

You get to a point where you shed your old Pre Narcolepsy skin, and you learn how to live again… All over again.
Re-examining, Re-inventing, Re-purposing, Re-forming Reality.
And this time, because you know…. its much easier.

I don’t have all the answers. No one really does. But this is how I view my Diagnosis. My life. Despite the years it took me to over come all this, my life is so much better now.

In time, I hope to see you all get to this place too. But don’t force it. Let it grow with you. And you can grow with it.”

When I wrote this, I have no idea where all that came from. I just seemed to look back and remember how things were… and how they are so much better now. I have never been happier in my whole life.

I have Narcolepsy, it doesn’t have me. If I were to try to hide my Narcolepsy from others, I would really be hiding from myself. It’s part of who I am.

And I am AWESOME.

Advertisements

3 thoughts on “Narcolepsy: Coping With Who You Are

  1. Dawn Holmes says:

    Thank you for sharing your story Marcia. It is a real revalation for me to see the struggles one endures with Narcolepsy. One would simplify it by thinking, oh, no big deal, so she falls asleep here and there But it is so much more then that. So many aspects of your life and dreams have been affected. I have a new appriciation and outlook on narcolepsy. Thank you for helping the world understand! Keep it up!

    Dawn Holmes

  2. marcianna says:

    Thanks Dawn! I so very rarely get comments, or even traffic for that matter! LOL. It means alot that you said this especially coming from some one who knew me long before I was diagnosed. I am sure you may recall the weirdness. haha… Apparently, my own version of normal. ^_^

  3. Anonymous says:

    Thank you for your story. It’s spooky…I could almost have written this myself. (except I have Bi-Polar as well so I AM crazy.) I found the genetic component particularly interesting. I thought my father may have had it but he had so many health issues N would have been way down on the list. However, my mother recently attended a family event where she got to visit people she hadn’t seen in 30+ years. As it turns out, there are several people on her side that have N. I think it gave my diagnosis more validity than any doctor’s test! lol Thanks for sharing!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s