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."