Living with Duchenne muscular dystrophy has been an interesting journey to say the least. And when added to the rigors of daily life the journey seems ever so remarkable. Having lived with this disability for twenty-four years I am still somewhat amazed by how far I have come. Yet in looking back I also realize how fortunate I am to have attended and graduated college as well as having the opportunity to work as an intern at Capitol Hill and the White House. Recognizing these successful endeavors I have pushed myself even further in pursuit of a masters of arts in Middle East Studies at the George Washington University's Elliott School of International Affairs. I continue my academic endeavors as I work part time for the Department of State's Near Eastern Affairs Bureau.
Admittedly, my transitions into the collegiate and professional realms have been quite unique. During the latter half of my junior year in high school my parents and I began to the arduous process of applying to college. After browsing a series of schools throughout the east coast—Duke University, Davidson, Wake Forest, and Saint Mary's College of Maryland. I applied to three schools and was accepted by Wake Forest and Saint Mary's College. But due to concerns regarding distance and financial constraints I settled on attending Saint Mary's, which is a choice I do not regret. For in choosing a proper four-year collegiate institution to attend my parents and I wanted to make sure we could find a balance in terms of quality of academics, distance from home, campus accessibility, and overall size of the student population. Saint Mary's happened to meet all those criteria.
Once all those criteria were met we had to deal with the most difficult task of all, which was finding a personal care provider to assist me in the mornings and evenings. The search for such an individual was a tall order and even frustrating at times. We talked to a number of health support agencies in Prince Georges County—where I live—as well as Saint Mary's County unable to find someone through regular channels. However, by a mixture of what I can only describe as luck and divine intervention we managed to find a personal care provider who had assisted me for my freshmen and sophomore years.
My freshman year with a personal care provider was a test case. The beginning was a bit bumpy, as I had to get used to being assisted by someone other than my parents. But eventually my personal care provider and I managed to develop a degree of chemistry that was both amiable and agreeable. Initially, this person assisted me in the mornings and evenings including weekends. However, as began to become more comfortable with my roommates and establish friendships on campus I only needed a personal care provider for the mornings. My roommates and newfound friends were able to help me on and off the commode as well as in and out of the bed. For during college I was strong enough to be able to take care of myself on the commode and change out of my clothes during the evenings. Even during the mornings on weekends I was able to call on my roommates to assist me.
But I would be remiss if were to talk about some of the difficulties involved. Our first difficulty, which really wasn't much of a problem at all, was paying for daily personal care. We were fortunate to have gotten involved with the Department of Rehabilitation Services who gave us a set amount of money per year to offset the cost of paying a personal care provider allowing us to not have to worry about any financial difficulties regarding personal care. However, we were never quite able to find a personal care provider via formal channels. In all I had utilized the services of three personal care providers. Two of who were recommended by the first personal care provider we utilized. These changes and sudden transitions were a little aggravating but not insurmountable.
I also experienced difficulties with finding compatible roommates, which was not so much due to my disability but mainly due to differences in personality, which clashed on a number of occasions. Though the roommates I had throughout the years were all very great at assisting me, the perfect fit hadn't really occurred until the latter half of my sophomore year when I managed to have the same roommate who was a good friend and someone reliable to help me out in the evenings and weekends. And by this time I managed to find a series of friends who would be able to help me in the event that one person was unavailable to give me a hand.
At the end of this experience, I realized that all the planning that went in to preparing for college allowed me to concentrate on the most important reason for going to college, women, I mean, academics. But humor aside, planning for the most serious issues allowed me to place most of my attention into the books while not having to worry about how someone was going to help me out. And despite the occasional emergency that arose my experience was really enjoyed. I learned to be assertive in asking my peers to assist and felt empowered in my ability to be a normal college student despite my physical limitations. I also learned how important it was to find compatible roommates. This is a point I cannot stress enough, as most of my difficulties were attributable to differences in personality. While the task is certainly easier said than done it is worth the effort nevertheless.
Regarding my professional experiences my journey was not terrible different from those not living with physical disabilities. In fact the experience was quite similar in terms of going through the motions of submitting resumes and searching for great internships. But my ability to land an internship in the Senate Office of Barack Obama, the White House, and State Department were all due to the professional, friend, and familial contacts. This owes much to the common adage that it's not so much about what you know but who know. However, it would be wrong of me to say that my academic and personal achievements had nothing to with me attaining these internships / jobs.
Throughout my professional experience I have learned that is very important to establish contacts and to maintain contact with those individuals. These persons knew about the processes involved in finding such great employment opportunities, giving me an edge over my peers. Their knowledge allowed me to meet the right people and get onto the fast track to building my resume. And in building my resume I was able to obtain bigger and better responsibilities that will only assist me in future endeavors. Though this blog post is somewhat short I hope it sheds some insight into my personal transitions into the academic and professional realms.