My Personal Experience of Epidermolysis Bullosa
Long word for such a little known genetically inherited disease, isn’t it?
You may be saying you have never heard of Epidermolysis Bullosa before, let’s call it EB for short. You are in the majority as it is so rare many hospitals and physicians will never come across EB in their entire career. Yet, it does exist and there is presently no known cure or even effective treatment for EB.
I went along for years, happy as a lark, donating to several different charitable organizations when able. Then I moved to Missouri and met the most beautiful, loving, pure-hearted little girl, my great-niece who was born with EB. At first, I thought she was a burn victim as I viewed her tiny thin arms, hands and legs wrapped in white gauze bandages. It was not until later when I was able to speak with her mother that I grew aware of EB and I was in complete shock!
My body shook with great sadness, my eyes filled with tears as I heard the quality of life my sweet little angel experienced every single day of her life. It was not so much that she didn’t play or romp about as most children, but the ever-present fear that she would produce yet another blister in doing so. To be touched a bit too rough, to be lifted in the wrong way, to swallow food that would rub against the inside of her throat...all standard threats for a child with EB. All actions I had taken for granted my entire life.
I was to learn, later, of the need to tear these blisters, a ritual that took hours and caused physical pain to the child and emotional pain to the caregiver who was usually a parent. You cannot just pop them. Ah, that of course would be too easy. No, you had to take a sterilized needle and actually tear each and every blister apart. Call me a coward if you must but I am not strong enough to watch the ritual of pain and I marvel at the courage, strength, and pure act of love any parent who performs this daily ‘bathe’ possesses.
Guess I fell in love with my nieces at this exact moment, mother and daughter bound by a devotion greater than you or I could ever imagine. How proud I was, and still am, of these two females, one a child growing into a teen, the other an intelligent, beautiful young mother. I wanted to wrap my arms around them, protect them from harm, yet I sat still unable to control the hard, cold facts of this disease, nor speak of hope when I found none. I hit me hard, as if a jackhammer had smacked me across the face...no cure...little research...a death sentence.
You see, as EB is rare and quite unknown, large corporations and pharmaceutical companies are unwilling to fund research. Does it make sense to put money above human lives or profit before care and love? These are children. What is wrong with our world?
I cried to myself, “Dear God why...why...why?” Then it struck me. Perhaps God, the universe or whatever force creates life, held a plan. Maybe they were very special children who would teach us courage and strength, would illustrate by their pain and existence what really matters in life.
Most of all, they would show us how to grasp each precious moment and live life to the fullest, not looking back, nor forward but living each second of life, not just existing.
Ending, I can say that I view my great-niece as perfection. No longer do I see the bandages, the blisters or feel pity. She has such wise eyes and a remarkable spirit and zest within her which emits a light so bright it overpowers any other emotion except pure love.
About the author ~
She views herself as a citizen of all the States, finding that people throughout the country are warm, caring and most want the same things in life, to enjoy their passions, make a living and be surrounded by those they love. In her own words, “Life is truly an adventure. I believe in giving everyone the opportunity to go after their passions in life. To not do so, creates hostility, depression and emptiness.”
A free-lance author and poet, she embraces stories that have meaning and purpose. Though a bit of a rebel, when some authors told her that no one would ever read a story set in the Missouri Ozarks, nor would they wish to read a mixed genre, that was all it took. “How dare they insult the intelligence of our readers by placing them in a box”. Off she went, and wrote this exact type of story, set in the small rural college town of Raleigh, MO. It is a mixed genre of suspense, horror, spiritutality and a touch of the paranormal. Monica is working on the sequel, The Wheels Final Turn, set in the State of California.
Follow Monica on Facebook
Visit Monica on her website
Follow Monica on Twitter
Her latest book ~
The Turn of the Karmic Wheel is a unique, fresh approach of how each individual’s actions in life affect the masses.
Set in the small college town of Raleigh, MO, the author delves into the psyche of several residents who live vastly different lifestyles. From the affluent to the poor, we follow each characters’ journey through life be it one of faith, self-indulgence, greed, kindness or diversity.
Angela Frank, a young wife, mother, psychiatrist and reluctant psychic, holds the key to unleashing a force more powerful than humankind has ever experienced as universal law takes hold, ultimately revealing the characters inner self, their soul. Under such scrutiny, some will face horrific consequences of their life’s actions, while others will find absolute pleasure.
From Joshua Allen, an egotistical, handsome, dashing young man to Euclid Hannigan, a simple country middle-aged retiree, you will be moved with emotion when the demons hidden deep within or the joy of gentleness and compassion surface as each characters story unfolds to a final climatic finish.
Watch the video ~
Visit Monica on the rest of her tour ~
Wednesday, November 10
Interviewed at Allvoices
Thursday, November 11
Interviewed at As the Pages Turn
Friday, November 12
Interviewed at Personovelty
Monday, November 15
Book Reviewed at Tell Me a Story
Tuesday, November 16
Guest Blogging at Tell Me a Story
Wednesday, November 17
Guest Blogging at Divine Caroline
Thursday, November 18
Book Reviewed at Stiletto Storytime
Guest Blogging at The Book Faery Reviews
Monday, November 22
Book Reviewed at My Reading Room
Tuesday, November 23
Interviewed at My Reading Room
Wednesday, November 24
Book Reviewed at Emeraldfire’s Bookmark
Thursday, November 26
Book Reviewed at Rundpinne
Interviewed at Emeraldfire’s Bookmark
