It is nighttime. The sky is peppered with bright, shining stars as I prepare for my run. Closing my eyes, I take a deep breath and off I go. It feels like I’m flying, but I know I’m not because the cool dew from the grass clings to my toes and I sense the pumping of my arms and legs as I sprint across the open field. Without knowing my final destination, I just seem to delight in the physical act of running, putting one foot in front of the other.

Suddenly, I wake up. Still mesmerized by my dream, I smile and chuckle. Instantly, my hand comes towards my face, and I have to will it to stay down, not to give myself a black eye or a bloody nose.

I have cerebral palsy, giving me a body that does not listen to my commands.

But my mind that is clear and focused.

My CP doesn’t define who I am! I work every day to redefine the word itself. Cerebral palsy, to some, means I can’t do anything. In reality, I can do anything I set my mind to!

The trials of CP

Cerebral Palsy is caused by anoxia—lack of oxygen to the brain.

I was born in 1981 and was not expected to live. I survived, despite my physical disabilities.

I have to literally command my body to complete every physical task that I require of it. Like others with CP, I experience constant fatigue and unpleasant muscle aches, caused by the involuntary contractions of my muscles.

I have to control involuntary movement on a continual basis. It’s as though my body has a mind of its own and I have to tell it to “behave,” which sometimes it chooses not to do. All of this causes a great amount of fatigue, to be sure.

I have to push myself to complete any task that the day requires. Simple tasks such as walking, dressing (both with total assistance) or driving my wheelchair with my right foot take so much concentration and effort that I’m exhausted at the end of every day.

I do have some very limited use of my feet and toes, so I have a specialized keyboard, mouse and monitor that allow me to utilize my computer. I type with my left toe, accessing one letter at a time. In my opinion, one of the biggest stumbling blocks CP creates for me is the amount of time required to accomplish any task.

CP has also left me with the inability to physically speak, but as you can see, it does not stop me from communicating. I began speech therapy at a very young age to work with sentence

syntax and idea expression as well as to learn to use technological devices to express my thoughts.

Today, though, I choose to bypass electronic media and use a communication board that, when held at my feet, allows me to converse with others by typing out the words as if I was using a computer keyboard. This reverses the challenge a little bit, as those with whom I am talking need to watch carefully, to “listen” closely; and often they need to reconfirm my message.

Despite the challenges, I view my CP as a blessing because I believe if I had a normal body that functioned properly I would not be the person I am today!

My support system

From the first I can remember, I was always told I could do or be anything I wanted if I put my mind to it, physical limitations notwithstanding. Because of these circumstances, I have always been a tenacious fighter, and have had the desire for my thoughts to be known. For me, that’s in written form.

It is true to say, though, that cerebral palsy has placed many obstacles and tests in my path. By using huge measures of persistence, faith and optimism, I have overcome it all with a certain amount of humor and grace, and I am proof that just about anyone can be successful if he or she truly has the desire to accomplish a goal.

I credit my grandparents, with whom I lived for most of my younger life, for lessons in faith, fortitude and persistence, because they helped me face adversity with a determination to beat the odds.

They helped me to overcome the horrors of public school education and aspire to go on to college. My grandparents realized that individuals with disabilities have the desire, like everyone, to be accepted and to advance in life.

It is a known fact that reading is difficult for some with CP and reading did not come easily to me as a child. My gram coached me every day in reading and writing and because of this, I learned the value of words.

I already had a keen imagination and listening to conversation stoked this, enticing me to find words to clarify my thoughts. As I became stronger in reading and writing, I felt compelled to share my experiences in written form. I had no inhibitions in that regard and found great joy in doing so.

This desire to create led to my early story writing, which I would do by pointing to letters or words on a communication board with a head stick. My grandmother facilitated this by writing down my stories in a notebook. My first short story was written when I was 7 years old.

Technology and education

My first communication device was a Touch Talker, which allowed me to program words and sentences to express my thoughts and feelings and to vocalize them. I accessed the device by pressing the appropriate keys with a long stylus attached to a cap on my head.

I eventually progressed to a Light Talker, which used the same method, but with an infrared laser on my head.

Although using my head was an effective means for communication, it was very tedious and tiring.

Later, I found that using my foot with a joystick was much easier for me to control. I used this form of communication primarily when at school, utilizing a letter board at home.

In my early days of school, I was placed in a class for multiply physically and mentally handicapped students for most of my elementary school experience.

At the insistence of my grandmother, I was excused from the classes for the mentally challenged, and mainstreamed with the other students. I have mostly fond memories of that time, unaware of what was to come.

Most students can count themselves lucky if they come out of middle school unscathed, differently-abled or not, and I was no exception. It was the start of a degrading experience for me that carried all the way through high school.

As all of us know, if one is a bit different at that age, one may be the brunt of cruel jokes and ridicule. Fortunately for me, there was always a classroom aide at my side, so I was not susceptible to as much bullying as I witnessed happening to others.

I was now using a Liberator, an improved version of the Light Talker, as my primary means of communication, accessed still with a joystick, and it was not uncommon for individuals to walk away from me while I composed my thoughts and waited for the device to speak for me.

Because it took me longer to communicate, peers and even educators thought I was mentally challenged.

Sadly, high school was a continuation of middle school. Although I was mostly mainstreamed, teachers constantly accused me of having my grandmother complete my homework, which was totally untrue. All of this led to self-doubt and depression.

Despite this ordeal, I successfully completed all of my high school requirements in four years and had the ability to graduate with my classmates. After brief consideration of a trade school for the differently-abled, I decided to take my SATs and apply to a four-year college.

Life beyond high school

I applied to St. Andrews Presbyterian College in Laurinburg, N.C. because of its nationally-known creative writing major. It was also touted for its accessible campus and an excellent disabilities program. I moved to campus in the fall of 2002.

While I found the academics stimulating at St. Andrews, the personal care was less than desirable, and I was unprepared to face the harsh realities that living away from home brought into my life. For the first time, I was alone without the loving support of my family.

Unable to express myself verbally, I felt the inhibitions of my disability like never before. I went from all of my needs seen to, to virtually none of my needs being met.

I left the school after three years, took a short break from studies, then applied to Messiah College.

For my first semester, I took only a 3-credit class.

After a semester, I moved on campus into a dorm at the insistence of the director of the office of disabilities, who was determined to increase my independence. My powered chair was equipped with a remote control with which I could open the exterior doors to campus buildings and my dorm room. However, I still needed to rely on others for access to the elevators and actual classrooms.

With the help of an academic facilitator and personal care assistants, I was able to make a smooth transition from home life to dorm life.

Although my schoolwork was physically demanding, I found joy in the fact that I was once again immersed in the world of academics, living in my own room, surrounded by friendly students.

The professors at Messiah were very accommodating and I excelled in my studies.

I only had the ability to take six credits a semester, due to my physical limitations. Because of the amount of energy needed to complete the assignments, I often asked for extra time. I always wanted to do my best, and the additional time allowed me to do just that.

Messiah College was a totally different experience for me. I felt acceptance there and was able to flourish—academically, personally and spiritually. A heightened sense of purpose gripped me because I knew that I would be the first non-verbal, non-ambulatory student ever to graduate from Messiah.

Through my years at Messiah, I was named to Sigma Tau Delta and “Who’s Who in America’s Colleges and Universities.” Receiving these honors gave me the will and fortitude to continue with my studies.

In the fall of 2010, I was presented the Living Well With a Disability Award.

During the last two summers of my college experience, I worked as an intern in the Marketing and Communications Department at United Cerebral Palsy of Central Pennsylvania. The internship gave me the opportunity to grow in my writing skills, and, most importantly, exposed and prepared me to the working world at large.

After seven years at Messiah, graduation day finally came. When my name was called for a diploma, the roar of the crowd was deafening. Most exciting of all, though, was the presentation of the Donald and Anna Zook Alumni Award to me for academic excellence, leadership, and Christian commitment. It is the most prestigious award Messiah College gives to a graduating senior.

I graduated magna cum laude, to my great pleasure.

Through all of my life’s journey, I have grown to believe that God, or a higher power, puts adversity in our lives to ultimately grow, flourish and—most importantly, teach and help others. It is my desire that everyone in my situation experience the same triumphs that I have been fortunate to have.

Without the support of my mom, my college experience would not have been as smooth as it actually was. She ensured that I had everything I needed to make my life more comfortable living away from home. I owe a great deal of gratitude towards her for contributing to my success as a student!

I would like to take this opportunity to thank everyone who supports, encourages and listens to a differently-abled individual. You may never know the impact you might have on that person.

I wish that those who read my story are encouraged, feeling the need to reach towards the stars themselves or to help loved ones to know that anything is possible, only if you believe it can happen.

Hope Johnson is a freelance writer based in the Harrisburg area.