Sunday, February 10, 2013

Hope for Michael, Sweet Hope

There is a pervasive and constant fear that accompanies paralysis. Of all of the warnings and instructions doctors and therapists give, they neglect to share how overpowering this daily fear becomes. I struggle, daily, not to focus on the fear and try to put it in the back of my mind, but much like quick sand, it sucks me in without warning.

There are small fears, like the ever present worry of a fall outside without a cell phone or flinging my chair too far when I flip it over while I'm sitting in my car and putting it together. The fear of dropping hot food or spilling boiling water on my lap. And there are large looming fears like the shock of autonomic dysreflexia, which is a reaction to the autonomic (involuntary) nervous system to over stimulation, resulting in severe hypertension or high blood pressure. It is a fatal condition and can occur without much warning at all and happens because of very simple reasons. Simply waiting too long to use the restroom is an example of a stimuli of autonomic dysreflexia. And if it is not quickly treated or noticed, this reaction is fatal. Wounds anywhere below my line of injury can quickly form, in about ten minutes, because of clothing that is too tight or because I sit too long on a hard surface without a proper cushion. Even a regular couch can cause a wound if I am not diligent and remember to switch positions, relieveing pressure on specific points of my body. And when wounds develop, the risk of infection is enormous. Any type of infection, at any time, can sneak in and reek havoc on my body. Preventing infection, especially urinary tract infections, and pressure relief become a part of daily life. And after I finally talk myself out of these fears, I am left with the numerous fears that come with normal, everyday life. Fears I am sure everyone shares, but mine seem to be on a much larger scale. My security is always a risk, both financially and personally. I'm constantly anxious I will run out of money and be too sick to work or worry I can't run from someone who tries to attack me.

And then there are the emotional troubles and fears. I fear someone will never love me or posses the ability to handle such a life on a day to day basis. I trouble myself with others' perceptions of my reality and how they view my struggles. I fear I will get trapped in the deep abyss of fear and loathing and never return.

My newly paralyzed friend, Michael, shared some of his fears and over riding anxieties with me this weekend and he wonders if anyone understands or possibly knows what it is like to live with such mind numbing and debilitating fear. I want him to know I understand. I understand the mind power it takes to overcome these things and to peel myself out of bed everyday. I know the will power it takes not only to propel myself, but also strive for better, yearn for the good. I know the mental battle it is to care for a damaged and broken body and the courage it takes to build a positive fortress out of the wrecked and ravaged bones and soul. But, I also know how to fight the fear, how to allow the goodness to win. I've been a fighter and believer for twelve and a half years and have yet to give up.

I find the flickering flame of faith and hope and stare at it until it becomes blinding. I latch onto the hope and try my best not to let go of it. I focus on the moments my family swoops in and offers assistance financially or emotionally. I focus on the MRIs and blood reports that after twelve years, finally show infection free bones and blood. I try ever so hard not to let go of the joyful and grateful feelings that come from moments with friends or my dog. Or come from a good meal or just sitting and watching a movie or reading a book. I focus on the good, the kindness, and the love that only suffering can plaster so brightly on a billboard. In our darkest moments, we find the greatest strength. I fight the fear with every bit of hope I have inside of me and I have the audacity to believe it will prevail. Because, in the end, hope is the only antidote for fear. Hope, sweet hope.

"You are the community now. Be a lamp for yourselves. Be your own refuge. Seek for no other. All things must pass. Strive on diligently. Don't give up."
~Gautama Buddha 


  1. I can't remember ever reading such a concisely and well written piece! What really struck me is how many of your feelings are the same everyone feels, but you point out so well how they are so amplified due to your injury. The way you fight to be positive and joyful are a tru inspiration, I am sure, to Michael and anyone else suffering. But they are also an inspiration to everyone else! Thanx for an eye-opening message! As Shakespeare might say, "Why so, now you have done a good day's work!" Peace!

  2. Well written and well lived, Sarah. Your struggle is infinite and you write so honestly about it. And even still you are able to inspire hope. Thank you.

  3. Your honesty and perseverance are so inspiring. The details you share are so helpful to those, like myself, who would never know the daily struggles and fears someone dealing with paralysis has. There is someone in my professional life who is paralyzed and although I have always thought myself to be considerate of his limitations, there are things I wouldn't have even been able to conceive of that you discuss. I know this new knowledge will help me to be an even better person, to this particular man and any other people in similar situations I may encounter throughout my life. I'm so thankful to have found your blog through Kelle Hampton and really enjoy reading what you have to share :)

  4. What a searingly honest and touching post. We are all fighting battles--some physical, some mental, some spiritual--so many battles--and it's so easy to feel like we are alone, that everyone else is happy, healthy and unencumbered with worry and fear. But it just ain't so. You are a brave soul, Sarah, to share your struggles and your faith in a better tomorrow.

  5. Beautiful words. Thank you for sharing with us.

  6. you just keep getting better. wonderful writing, just wonderful.

  7. Naming fears so openly is so hard, and so good for us. Thanks for inspiring me with your honesty and strength

  8. This is kind of very very good piece of article. As I suffered from this type of problems , I know how it feels like....


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