‘Once in a golden hour, I cast a seed Up there came a flower. The people said a weed.’ - Alfred Lord Tennyson
Some books there are that become imprinted on the soul, permanent reminders of the gift of life and health and the care we share for each other. Such is PEACH – a transformative little book written by an exceptional being, ‘exceptional’ in the clinical sense as well as in the humanity definition – Jenevieve Woods. She offers her reason for writing as follows: "This book is an embodiment of my struggle to never surrender to disease. I want the book to build bridges for people to learn about and celebrate their differences. The world will be a better place when people accept all other people for what they are."
Peach was born with Mitochondrial Neuropathy ATP deletion. Though she defines the alteration from ‘normalcy’ well in her book, for the reader unfamiliar with this rare disease the following is offered: ‘Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body (except red blood cells). Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support organ function. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole organ systems begin to fail. The parts of the body, such as the heart, brain, muscles and lungs, requiring the greatest amounts of energy are the most affected. Mitochondrial disease is difficult to diagnose, because it affects each individual differently. Symptoms can include seizures, strokes, severe developmental delays, inability to walk, talk, see, and digest food combined with a host of other complications. If three or more organ systems are involved, mitochondrial disease should be suspected. Although mitochondrial disease primarily affects children, adult onset is becoming more common.’
Through out this impressive book Peach relates her story of dealing with her malady and coping with the world at large in both prose and poetry and always with a sense of now, of hope, and of profound imagination. At one point she states, ‘I feel like this MITO thing is a gift. It has given me special glasses that help me see everything the way it really is. I am not focused on the future anymore. Instead, I cherish this moment right now. I am not sure how many more moments I will have.’
There is no self pity here – well some, as we should all expect given the cramping lifestyle Peach must endure – but instead this is a book of instruction about a rare disease, the manner in which Peach changes the invisible girl into a visible, meaningful, caring person whose goal is to enlighten and support others with debilitating diseases. That purpose she makes clear toward book’s end – ‘I could have chosen to wallow in the inevitable and accept my flaws; however, I decided to take my flaws and circumstances and try to find the silver lining. Showering positive energy and restoring my faith in me is the chemo that kills MITO, and keeps it from grabbing hold of me and taking me down. I know I am sick; I do not need to be reminded. I know my fate, so why should I try to fix what is broken. I am not looking for perfection. I am celebrating imperfection and building a rock-solid legacy that others can pull from in their time of need. Now that my looking glass is riddled with shattered dreams, I choose to see rainbows in the shards of glass. I want to build a monument that portrays strength and triumph through determination, heart, and accomplishment. I want to do that despite being told often and in many ways that I do not mean anything more than a pillar that my classmates run into in the halls of the school.’
Hats off and Brava to a compleat human being, a girl who has taken the disease she was dealt and used it as a path for teaching the world the meaning of being.