Chronic Chiari: Redefining Ordinary.

As a little girl, my parents worked hard at teaching me that I was special, that I was one of a kind, unique.  While every little girl dreams that she was really born to be a princess living in a castle, I had already determined that there was something that was different about me.  All little girls imagine that the life they are currently living is just what they must endure before their prince comes along a sweeps them off their feet into the magical life they were destined to live. When I was 36, I realized just how special I was and exactly how unique I was created..  Luckily, I had long go realized that my brand of special didn’t include castles or princes. I had always questioned (if only to myself) why things seem to feel so different for me.  I often wondered if other people felt the same things that I felt.  It seems like I was destined to be more restless than others.  I've always had this sense that my version of reality was colored a little differently than everyone else's.

From a very early age, I wondered what it would be like to close my eyes and have my world be still.  I've never known what it feels like to have my body be completely still. Whenever I lie down to sleep my body becomes more active or maybe it's just that I notice it more because I am still.  I envy people that can lie their head on their pillow and drift off to sleep easily.  When my head hits the pillow, I hear things that I shouldn't hear, I see things I shouldn't see and I feel things that I shouldn't feel.  I didn't realize that others get the pleasure of being cocooned in velvety darkness when they attempt to sleep at night.  Instead my sleep battles with a cacophony of bodily processes that most are blissfully unaware of.  Try to imagine the cells of your body being the screen upon which they are projecting Walt Disney’s Fantasia. Just try to imagine how the cells would vibrate from the incredible melodies blasted by the speakers. Imagine the confusion as the colors change wildly from red, purple and blue. Even if you closed your eyes you couldn’t escape the flashes of bright colors being thrown across the screen, across your own body. That is the best way I can describe what every night holds for me.  Quite like Fantasia, It evokes more nightmares than fairytales.

Many youngsters dream of being able to fly like Peter Pan.  I, however, wondered what it would be like to have the ground feel firm beneath my feet.  Whether I am sitting or standing, I have this constant nagging feeling that I am falling backwards. Logically, I know that I am not moving but I have the sensation that I am. For me life has never been firm like concrete.  I’ve never lived in a black and white world.   My reality has always been full of colors, confusion and complexities. I feel like I have been stuck in a swirling, whirling mix of Technicolor sights and Dolby sounds.    The only problem is that Captain Hook, Ursula, Cruella and more are living within me.  My body is the playground for their cruel tricks and harsh pranks.  It’s a difficult reality.  A difficult reality that is my reality.  It’s the only reality I have ever and will ever know.

However, I will never forget that its still a blessing to be able to experience life, no matter how confusing and difficult it is. My illness has taught me many lessons. The most important of which is that the only gift anyone can ever hope to receive from life is happiness. It’s such a simple lesson to learn; but it is so very difficult to live. It’s easy to allow the frustrations of illness interfere with my happiness. So I practice happiness every day. Here is my list of tools to finding happiness.  Practice a few of them yourself to see if they work for you.

 

Hug
Smile
Touch
Pray
Dance
Laugh
Meditate
Sing
Giggle