…”My thoughts are constantly focused on keeping aware that my circuit is hooked to my trachea and it is hooked up properly to the respirator. My eyes are constantly monitoring my machines to determine if there are any loose wires. I worry if the circuit will come off because after all; this ventilatory machine is what’s keeping me alive. Any slight incident will send my anxiety level through the roof, which makes the breathing more difficult.
Watching people around me, I hope and pray that no one will accidentally bump into my portable ventilator machine when I am out with family or friends. I am also constantly watching my parents that are operating the ventilator machine to make sure they are operating it properly. Common sense tells me that they have dealt with the machine for years and they are experts at manipulating it.
This is something that goes through my head every day, because the respirator is my life. I would have to say on a daily basis, the one and most important thing that is a worry is my ventilator machine and my breathing. Without the machine I cannot breathe and if I cannot breathe, then my race against death is over. Being that I have become worse and worse over the years, I worry about my health and I have consistently used antibiotics for two years now. I do what I can to help myself..
I am a person that keeps alot of things to myself as I don’t want to worry others. Living in my body is not an easy thing to say the least. Knowing that I am in the hands of other people rather than being responsible for myself is a strange feeling. If anything were to go wrong, someone else must fix the problem. I am also at the total mercy of my caregiver, which makes me exceedingly aware of my vulnerability. I take a cautious approach to daily things I do.
Whether it is watching people working with my respirator, or the simple thing of driving my wheelchair down the wheelchair ramp to go outside. Going up and down the ramp I worry that I will drive off the side.
Make no mistake about it, my life is consumed with worry and contemplation, but it is also consumed with love and joy for this life. Most people that suffer from a debilitating disease are “stuck” at the first phase of their limitations. If that were the case with me, then this would be the final chapter to this book. So, it is with a very conscience effort that this detail about my life occurs at the beginning of my book.
There will be recounting of physical limitations and surgeries and so on throughout the book, but I feel it is imperative that you understand that these events are intertwined with loving, caring family and friends and my beloved animals.
There is a quote that likens my situation to that of a horse race:
“Each handicap is like a hurdle in steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along too.”
That is how I choose to live my life, as fluid and graceful, as my body is stiff and confined…”
To read more about the book, “Missing My Body”, please visit http://www.musings-from-a-writer.blogspot.com . All proceeds from the ebook go to Jason Walker, the subject of this amazing book.