When a person hears the word Hero or Heroine they usually think of people who rescue, save, and defend the honor of others… The definition means “a man or a woman admired or idealized for their courage, outstanding achievements, or noble qualities”. My best friend is my Hero or Heroine for those sticklers out there. Her courage is beyond anyone I have ever met and her outstanding achievement is that she is alive and despite her daily struggle lives with laughter, and an incredible sense of humor, humanity and compassion.
I want to take you on a bit of a journey read this next paragraph and then try to do the following before you continue. Please indulge me for a minute of your time.
IMAGINE: Seat yourself or lie down somewhere comfortable. Close your eyes, just for about a minute, listen to your breath, focus on your breathing as if taking yourself to a meditation. Hear your breath inside your head, deep and loud. Imagine yourself on the moon, with grey dust at your feet, an echo of silence surrounds you as the cold bitterly embraces you, everything begins to ache, you become stiff from the cold and can no longer move. You are trapped under a pitch – black sky, alone on the moon, you try to scream and nothing comes out, no sound, no one is there to understand you or your pain. Trapped.
Continued;
Now you and I can open our eyes and get up from our bed, chair, wherever we are and go on about our day, leaving this imaginary nightmare behind us. My Hero and my friend Kati cannot. Kati has “Locked-in Syndrome”. Locked-In Syndrome is a condition in which a patient is aware and awake (so she can open her eyes) but cannot move or communicate due to a complete paralysis of nearly all voluntary muscles in the body except for the eyes. When my life turns dark for me I stop and imagine what is it like for Kati? When I imagine her world it makes me gasp for air. Then I turn my attention away from my trivial issues. Kati is not imagining, she is trapped in a living hell. With all her intellect, and her imagination (Kati spoke 5 languages fluently) but without the means to communicate verbally, Kati is trapped in a body that no longer is willing to work for her. She can’t wrap her arms around the ones she loves or hold and hug her friends.
Many believe that Kati doesn’t feel anything. This isn’t true: because of her condition ALL her senses are heightened. She told me once, “the worst thing about summer is when she has to watch the mosquitoes bite her and there is nothing she can do about it. Try and explain, by spelling out all the words for scratch there, on the back of my head, on the right side, a bit lower and to the left”! By the time she has spelled all that out with her eye ball language 3 – 6 mosquitos have blown up full of her blood and dropped off to digest somewhere on the floor.
Some people need to feel numb so they turn to drugs and alcohol so they can’t feel pain. My friend Kati lives a drug and alcohol free life filled with pain. From the moment she is awake in the morning she is sore and her body aches and it continues throughout her day and all night. She is always stiff and uncomfortable because “Locked –In Syndrome” charmingly comes with a rare type of paralysis and you cannot move. But Kati can feel everything and is fully aware of everything; you will never hear her complain because Kati can’t talk. However she wasn’t born this way, she was tragically struck down by a stroke at 21, which left her locked in this human prison. Some might see this as a sentence or a form of personal torture if you will, but Kati doesn’t.
My dream is to wake up from my own nightmare and find her in the kitchen cooking me breakfast (she is a great cook). But Kati can’t “wake up”, she has been like this “Locked-In” for 18 years. (For people “Locked In” it is extremely rare for any significant motor function to ever return. Within the first four months after its onset, 90% of those with this condition die, (they literally loose the will to live). Or can she one day “wake up”, is she a Miracle waiting to prove the world wrong? I’d like to think so. So many medical miracles have come before this.
I met Kati when we were both 18 years of age in Milan, Italy. We saw a common streak between us and became like sisters lightening fast, we were joined at the hip, when we were not together we were sharing letters and faxes, before the wonders of email. She also saved my life from starving to death from Malnutrition eating breadsticks and diet coke because I couldn’t read or speak Italian, and was too afraid to venture beyond the corner store. I remember her telling me “I’m going to conquer the world!” I believed her, in fact I still do, only life has forced her to re-think and come at it from a different angle. Stick to reading this blog she is going places! She has since she has been “Locked –In”.
Kati is a rare individual who’s emotional and mental strength and determination out weighs anyone I have ever met. (And I have lived in 7 countries and been to over 65 so I have met a lot of people, just saying) She has a wicked sense of humor and she is as SHARP as a whip, nothing gets past her. She see’s and hears everything. I fondly say she is a bit of a control freak too especially in the Kitchen (I told you she was a good cook) and dictates how everything is constructed, her hands may not have touched the food but she has micro managed it so much that there is no doubt she created it.
Kati told me once that living without speech is the hardest thing for her she says it is like being trapped in space. “It feels like I am on the moon, grey dust at my feet, an echo of silence surrounding me as the cold bitterly embraces me. I’m trapped under a pitch-black sky. I am all alone, on the moon, in my pity”. IMAGINE?
But, Kati doesn’t want pity! She wants life! She wants your support. Kati has gone through so much in the past 18 years it is hard to put into these pages, but she is doing it! She is now ready to begin to tell her story, and open her world to new possibilities. She has learnt the depth of Strength, Determination Compassion, Despair and Love. Kati is turning disability into ability in so many ways today. Kati has a few dreams that she is working on and I would love more than anything, to help her make those dreams come true. She has started this blog, which I am blessed and honored to be apart of.
I ask that you share her blog with anyone and everyone you know, it takes two seconds to copy the link and post it on Facebook, Tweet it and or email it to your address book. Which is less time than it took for you to close your eyes and imagine yourself “Locked In”.
If you wish to follow Kati’s blog please click here: http://katilepisto.fi/en/
Copyright © 9.28.2013 Stephanie Paul. All rights reserved.
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