My name is Francisco Oller, and I was born in San Juan, Puerto Rico. Although I came into this world without any complications, I developed nystagmus within two weeks. After a CT scan and MRI, I was immediately referred by my father’s uncle, Dr. Jose Luis Garcia Oller, to Dr. Neil Miller, a neurophtalmologist at Wilmer Eye Institute at The Johns Hopkins Hospital. At three months, my diagnosis was thought to be either congenital motor nystagmus or spasmus nutans. Later on, I developed head nodding, which did not cease until I was nine months old.
At 15 months, I started to exhibit a delay in walking and ataxia. Despite normal cognitive and language development in my childhood I still exhibited signs of ataxia and hypotonia. As I continued to grow, I experienced a delay in my progression from crawling to walking. At a follow-up appointment at Johns Hopkins Hospital, my parents mentioned their concerns of my delay in walking to Dr. Miller. He proceeded to refer us to Kennedy Krieger Institute for Children with Disabilities, an affiliate of Johns Hopkins, where I have been treated since that time.
In 1996, after I underwent a series of tests at Kennedy Krieger and the results were sent to Indiana University’s Department of Medical Genetics for further analysis, I was diagnosed with PMD/SPG2. The mutation is in the proteolipid protein gene, specifically a T494G = Val165Gly mutation. My new mutation was the subject of a paper in the American Journal of Human Genetics in 1999.
My childhood seemed normal to me – as if I was the same as any other child without disabilities. I walked short distances, usually with the support of one of my loving parents. Although I never learned to ride a bike or skateboard, I was undeterred from experiencing the joys of childhood. In my early years I took occupational therapy, which stopped once I entered elementary school. I have been taking physical therapy since I was a baby and continue to do so.
During my elementary school years, the school made certain accommodations for me, but some of my classmates bullied me because they thought the added support was unfair. Further exacerbating my identity crisis was the fact I was rarely invited to any sort of outing. Being treated with such prejudice early in life traumatized me for a long time. My life has shaped the person I am today and given me the greatest gift — a unique relationship with my mom.
In 2012, I moved to the United States to attend Providence College and received a high-level college education. Throughout my life I’ve learned a great deal about chance and faith. At Providence College, I found a caring community, from the Dominican fathers to the deans who nurture you and the professors who teach you. At Providence College I made lifelong friends, who always included me in everything. We attended concerts, went to movies, and just hung out. Whatever the destination or its accessibility, my friends and I always found a way. These relationships helped me discover the benefits of being vulnerable, and asking for help made for deeper, more genuine connections with people.
While at Providence College, I discovered my passion for public speaking. I held annual motivational speaking engagements during all four years of college for various constituencies including faculty, staff, students, and alumni. I served as a guest speaker on the subject of motivation to business classes and community outreach programs at Duke University and Roger Williams University. I became comfortable in addressing radio audiences through National Public Radio Rhode Island and appeared on the weekly segment This I Believe: Coping with Challenges. Additionally, I made television appearances on the Telemundo Television Network in Puerto Rico.
Through motivational speaking and by sharing my story of being born with PMD/SPG2, I hope to leave listeners with a more positive outlook on life. I would like listeners to realize that one can overcome fears and insecurities with an optimistic outlook, and that it is important to accept our imperfections and live life to the fullest. I stress in my speeches that people should see those with disabilities as equals. When looking at people with disabilities, people should not feel sorrow, but instead recognize the courage these souls possess. People with handicaps are constantly readapting to their environment. When referring to people such as myself the common words are disabled or handicapped. While labels like this do not personally offend me, these labels do not get it quite right. I am not a broken-down computer; in fact, if I had to fancy myself as something it would be a sleek, new state-of-the-art MacBook Pro! My mindset can best summarized by a paragraph from my senior year motivational speech called, Rolling Through Life: “Disabled implies that there are things you can do that I can not. That’s true. But I guarantee you that if we were racing to lower campus, I would win most of the time.”
Becoming actively involved in college life and excelling academically became priorities. My education culminated in graduating magna cum laude and in the top 10% of my class at Providence College. I graduated with other honors, including being inducted to the International Business Honor Society, Beta Gamma Sigma; making the deans’ list every semester and being named Student Leader of the Month. I also served as an Admissions Ambassador, Orientation Leader and Executive Vice President of the Student Congress. One of the biggest honors I received was given to me on April 25th at The Student Recognition Ceremony. I was awarded the Leaving a Legacy Award. “The Leaving a Legacy Award is given to a senior who has impacted Providence College in a way that will be remembered for years to come.”
Although my handicap has impacted my life significantly, I have been able to develop a positive mindset largely because of my strong Catholic faith, my parents, and my friends. The mindset involves preparing myself for the challenges I will face. I remind myself during those challenges that no matter how much how much I accomplish each day I should be proud of myself. Given PMD, I face a world that is often challenging and taxing, but also a world that holds so much beauty. Those beautiful moments remind me of a quote by A.A Milne, the author of Winnie the Pooh, who once said, “You’re braver than you believe, and stronger than you seem, and smarter than you think”
I do not exactly know how my medical condition will progress. It is possible I might someday be more mobile and require less assistive devices, and I continue to live with that hope. The day we lose hope is the day we inadvertently impose limits on ourselves. What matters most in life is how we shoulder our daily challenges.
I am excited to begin my first year as an MBA student at The University of Tampa and to pursue my goals and career. I believe life — the good and the bad — is an experience to be shared with others. Sharing is the only genuine connection. I am grateful for the opportunity to raise awareness of PMD and to share my journey with The PMD Foundation.
Yolanda García y José Oller.
Older brother, José Oller.