Wednesday, June 24, 2015

Land of the Rising Sun: Graduating from University with Becker's Muscular Dystrophy



A little over a week ago, I graduated from my university with an Honors Bachelors of Science in Bioengineering and Magna Cum Laude academic distinction. As an Honors College student, I completed a roughly seventy page Honors Thesis on specifying biocompatible materials for a forearm implant device to enhance patient grasping after a particular type of surgery. Somehow, I - garbed in a medieval cap and gown for commencement - ended up adorned with various colored items (cords, tassels). To everyone, graduation from university is a momentous occasion that is both unique and universal – a sense of accomplishment is seen, and even required, from those who graduated. Despite that, I felt that having Becker’s Muscular Dystrophy somehow, for better and for worse, altered my perceptions of my graduation. The adversity I faced and overcame adds a greater level of personal meaning to my graduation; I am grateful to the help I received during my journey and where I have ended up following obtaining my diploma. 

However, here I will diverge significantly from the typically lofty appreciation of graduation – in many ways, graduation represented a culmination of the adversity, not my overcoming it. Thus, I think the challenges, more so than simply the successes, should be illuminated; clearly, if I could graduate as an engineer in the Honors College and with a high GPA, many of these efforts were successful. Thus, I shall focus on these difficulties.

Waiting for my departmental graduation to commence, I became anxious and drew excessively close to crying as my heart collided with my chest rapidly. I had volunteered to be the speaker for my major – for there were speakers for all three majors represented at this graduation ceremony – despite my misgivings on writing a speech. For the other two majors, there were two speakers chosen by their class; in the case, of my major I simply was the only person to volunteer. Feeling tears almost welling up and my heart still pounding furiously, I had a brief but poignant reflection on my experiences: I felt, despite doing well in a difficult major, as if my having a physical disability overwrote my experiences. As if I was somehow a fake because I have difficulty with physical activities, especially those involving fine motor control, that comprise the hands-on lab-work considered the hallmark of true engineering. By being physically disabled, I felt transformed into a pseudo-engineer, one only capable of the theoretical, academic work but not true engineering. In this situation, even just my heart would fill me with anxiety, but here I grappled with a much more powerful foe: myself.  

Sinus tachycardia enveloping me, I realized it was my turn to speak, so I managed to suppress the sadness and walk to the podium. I spoke fast and nervously but passionately, eager to deliver both an empowering message and capture the department as I see it. Without the lofty sentimentality, but with the honesty that I felt was required. Then I returned to my seat, my heart beat still obviously above 100 BPM, and my work was then done. Following that speech, I somehow felt slightly resolved; the tension was present but the anxiety had become subdued.  A friend, after the ceremony, commented that my speech was quirky yet honest and that she had really liked it. She was not the only one – a couple professors of mine had similarly complimented the speech – and I felt much more at ease. These efforts did not counteract the years of adversity I had faced at my university but they framed the difficult in a different manner: the challenges became something I could handle even if I felt ready to give up. 

Despite starting to ride a mobility scooter in fall 2012, I felt that few people truly understood my experiences. As I felt weaker and began walking less, I became more detached from people around me; more pity than empathy was heaped upon me, or so I thought. As time went on, I revised my views and decided that there was empathy mixed with the pity. I became better with handling my physical condition and returned to performing well academically (by my standards) even as classes got harder. 

Throughout my physical and mental strengthening, there was seemingly one constant. During a midterm for an engineering test in fall 2012, I felt excruciating leg pain that forced me to stop before the test was over and take a break. As a junior taking a midterm in heat transfer in early 2014, I managed to inflict back pain upon myself due to the intensity of writing required by the test; for the next few days, my back was slightly weaker than normal. Earlier this year, in February 2015, I had to postpone a test by a day because I was feeling powerful heart palpitations that set my chest on fire with the high flow rate of my blood. And, lastly, during a test my last term at my university, I felt discomforting anterior foot pain near my right ankle, inhibiting any attempt to use my right foot to bear high loads. Despite working to improve my posture and leg strength among other goals, I still endured great amounts of pain, especially in my back and legs. The development of heart palpitations during the close (the Act 5, if you will) of my undergraduate experience reflected the high stress – physical and mental – that I was subjected to through this degree program. 

Because of having Becker’s, I felt cut off from having genuinely close friendships; I even felt that I was falling behind professionally, not able to pursue as many activities as my peers. The harrowing thought that my disability may somehow make me far less worthy of a candidate hit viscerally; I want to believe that my condition has allowed me to grow as a person and that I can overcome any limitations. However, this fear, which subconsciously led me to pursue few activities, made me feel completely separate from everyone else, even if we had shared many classes or were, at least, categorically friends. Despite being in a study-intensive major, I rarely studied with other people and when I did I often felt socially excluded. Even when I performed research as an undergraduate and penned my thesis, I still felt that I was somehow less worthy of an engineer and professional. I did not do hands-on work for my research, which fits into the notion that people with physical disabilities should not be allowed to perform tasks that required fine motor control. This perspective blended with my difficulty of making close friendships – ultimately, I felt separated in a plethora of ways. One of the major mechanisms by which I felt isolated was the notion that I am very smart but in a manner that removes me from emotional consideration; ultimately, acumen was my primary positive trait and that I was not truly relatable. At the same time, my cognition is quite different from my peers because of my condition both because my condition is neurological in nature and because I have to interact with the world very differently. 

In many ways, my graduation represented the continuation of my feelings of social exclusion, including my fears of how other people perceive me as a professional, throughout my university experiences. Furthermore, I felt great amounts of pain and other physical discomforts that fed into my sadness and anguish; combined, these woes made school excessively difficult for me, even though I performed well. The notion of my high intelligence managed to raise expectations on me without offering me any truly consolation. To be honest, I still worry that having my condition separates me from connections to other people and from a professional future…that someone would view me less because I have a neuromuscular condition that changes how I interact with the world. 

Graduation was itself adverse in that I had to transition from one set of obstacles to another; such obstacles do not value my happiness against my productivity, only my relative productivity without my condition factored in. However, such challenges are what I must face. Wishing to end on a happier note, sadness and anguish, despite very much existing, were buffered by a drive to achieve great things and a slightly new framing. My time pursuing counseling during my last term, despite being rushed, provided valuable insight into what I can do, even living with a physical disability. I told my counselor about some of my fears, which extend as deep as the Marianas Trench, of having my condition and how other people perceive me as a result. Through sharing these difficult experiences, I was able to recast my feelings and become more committed to the idea of moving forward, even if I regularly felt that I was being forced in the completely opposite direction. This time during which I pursued counseling allowed me to see myself in a different perspective and begin to accept myself and my condition. I saw graduation was much more enlightening yet difficult than empowering; a collection of hard-earned lessons that may possibly borrow from Taoist teachings. Having followed many teachers including myself, I gained momentum that can carry me to new heights even as I grapple with myself.

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