My name is Brittney Clouse and I’m entering my senior year at Pennsylvania State University where I study digital / print journalism and am minoring in entrepreneurship and innovation with a focus on new media.
I was born with Cerebral Palsy. Weighing 1 pound, 13 oz, my mother had me at 26 weeks — an emergency C-section. My family enjoys to this day to tell me all about how I was no bigger than a ketchup bottle with arms, and how I fit in the palm of my father’s hand. I stayed in the hospital for 72 days, dealing with a collapsed lung and trying to gain enough weight so I would be able to come home. Like all parents blessed with a child with special needs, my parents were warned about all of the “maybes.” I may be blind, I may never walk or talk, I may never know who my parents are or that they are there, I may need full-time care from this moment on. My parents have never discussed with me the thoughts or feelings they had during this difficult time, and I cannot imagine the decisions that may have faced them, but I was one of the lucky ones. My mother says that on my actual due date, I woke up and began laughing as my father changed my diaper, since that day they knew they would be making different decisions than the ones advised.
According to the National Institute of Neurological Disorders and Stroke, “the term cerebral palsy refers to a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement, muscle coordination, and balance.” CP affects the part of the brain that controls muscle movements. I was diagnosed at birth, but the signs of CP usually appear before the age of 3. The most common symptoms are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy. The disorder isn’t progressive, meaning that the brain damage typically doesn’t get worse over time. Risk factors associated with CP do not cause the disorder but can increase a child’s chance of being born with the disorder. CP is not hereditary.
Growing up, I was a “mainstreamed” student, meaning that my parents chose to put me in a regular public school in the same classes as my peers. I have always been mobile, walking with different devices at different points of time in my life (a walker has been my main choice). But I’ve also tried crutches and a cane. I never struggled with other CP related issues such as seizures or speech issues — my mobility was my biggest problem. I have high muscle tone-quadriplegic spastic CP. I have a scissored gait. My left side is mostly affected, but I get slapped with the term “quad” because of the over compensation of my right side over the course of my life.
I tell you this because today I am 21 years old and still mobile. But, when I was 16, I began suffering from unbearable hip pain. This suffering went on for two years with no solution, and eventually the pain had spread from my hip to my back and I returned to using a walker, something I hadn’t done since I was 10. At 17, we started talking about chronic pain and I was fitted with my first wheelchair just in time for my 18th birthday. All of this was devastating to me and my independence as well as my sense of self. However, it was during this time I began my blog, which is now mylifeasbrittney.com. I wanted to reach out to other people with Cerebral Palsy as well as other disabilities in the hope that I would find a solution to my pain and friends on common ground. This is how social media became my passion and how I am able to write here for you today.
Over the years, I’ve tried just about every treatment and / or pain medication / management plan there was to offer. Botox ended up being the most successful. I am mobile again, though I cannot walk the distances I once did. I use my wheelchair part time as well as my walker. I hope to outline here all of the treatments I’ve been through, as well as give you some lifestyle advice. I hope to be a friend to you as a reader as well as a source of information and I hope to see you soon. 🙂