In Loving Memory of Me

Sufjan Stevens says it best: “All things go, all things go.” He sings of selling his clothes to the state, of loving in the name of living, and I listen. Two UCSD mugs sit in my kitchen cabinet, and four UCSD sweatshirts hang in my closet. They remind me of the countless sleepless hours spent during my past life as an undergrad literature major student; they haunt my mourning days of late. A part of me died on June 16^th, 2007. My identity was laid to rest with a weary sigh of relief, a couple drinks, and an enthusiastic round of applause by people too old to remember the vertigo of surviving your self. It all happened so fast; I was by my side as I submitted my last final exam, and I can remember lying with me as I took my first breathe of post-graduation freedom. But then, just as soon as I blinked tears of joy from my eyes, I was gone.

I have mourned in secret for close to a year now. And it has taken me these long eleven months to realize that mourning is exactly what I have been doing. No one could have convinced me back then that I would miss the all-nighters studying, or the hectic schedule of bustling from class to class. If you had asked me last May what I wished for most in life, my answer would most likely be, “To sleep for two weeks straight, stay in my pajamas for another five days, and only leave my apartment by sheer bribery of Starbucks and chocolate.” Hindsight has since taught me that a good night’s rest only takes us so far in our day.  And even though I was never lucky enough to be bribed with caffeine or sweets, I assure you that wallowing in one’s sleepwear grows old very quickly.

I understand now that my identity as a university student was the only thing in my life I felt I alone owned.  Congenital Muscular Dystrophy humbled me at a very young age into understanding that there is only so much in this world we have control over. The care of my body falls largely in the hands of others. And while it is clear that I am ultimately responsible for my physical health, I cannot take full credit for it. I came to terms with losing function of different muscles at various stages in my life. The process of growing up was directly linked to my acceptance of how my image has changed in photographs over the years. Now twenty-four-years-old, Having a trach and ventilator feels completely natural; whereas at the age of ten, it seemed as though machines were replacing me piece by piece. Growing up with MD also encouraged me to relate to activities I would never encounter first-hand by appreciating experiences unique to me. Scraping my knees on asphalt during an intense game of tetherball would never be an issue from the comfort of my electric wheelchair. Having the sense knocked out of me by every stray ball on the playground, on the other hand, proved to be just as likely, and infinitely more comical- especially once all moving spheres grew to resemble grenades missing their pins. In this way, life differences became caves to explore with my imagination. Fictional stories of others’ lives and adventures picked up the slack for my body, and persuaded me to rely on my mind to get me where I wanted to go. By exercising my imagination and will to learn, I found it possible to live beyond any physical confines that lay before me.      

Once I was accepted into UCSD, I recognized my mind as my sure ticket into equality. Lying one of sixty term papers in a messy pile, the name on my paper did not aim a spotlight at my wheelchair, only at my ideas. For the first time in my life I was judged for the strength of my views before my appearance. After overcoming the usual freshman jitters, and confronting my shyness, I realized just how liberating it is to truly have a voice. Professors encouraged me to discover my own worldview through the arts, and literature immediately embraced me like an old friend. Writers like Langston Hughes and Jack Kerouac taught me that the foreign, even unpopular voice sounds out most sincerely. So, I began to sound out too. It was thrilling to once again explore all the ways I was connected to others. It didn’t matter if I agreed with any given writer’s point of view, as long as it could help me shape my own.  My work often wavered between proclaiming a strong identity, and hiding behind others’ in doubt.  In this way, the faceless voice of my work took up my cause and became my champion, my crutch.  

On June 16^th, 2007, my beloved crutch was knocked out from under me. I understand that now. I also understand that the notion of equality I worked so hard to achieve is a polluted one. Equality is not marked by one’s right to highlight his/her best qualities, but by one’s obligation to expose his entire being for all to see and cherish. The urge to censor the image I projected kept me from being completely honest with both those I wished to touch, and myself. The pride of excelling in school came at the price of hiding a side of me I feared compromised my chance of being viewed as equal. Any expression of vulnerability or insecurity meant certain death. The day after graduation changed all that, though. It stripped me of the thing I needed most: my ability to answer that age-old question, “Who am I?” “I’m an exhausted, overworked, poor college student” rolls off the tongue so much easier than, “I’m unemployed.” To this day I cannot define who I am without first defining who I am not. I am no longer a UCSD student, not even a miserable one. It is getting easier, however, to say that I am proud that my identity is largely defined by my disease. MD not only shapes the way I perceive myself from the inside out, but also how I relate to those around me. It has taught me to appreciate both the strengths and weaknesses in us all. Personality traits I once feared as liabilities are beginning to surface; all my doubts and quirks are becoming accustomed to what it feels like to live under my skin. And I, in turn, am learning how to incorporate these lost pieces of me into the person I now want to be. My ego goes through a continual state of detox, and I am discovering new addictions to get me through. Not feeling the need to rationalize my every move seems to work best at cutting the craving for the praise of others. The liberation I once felt from being in a crazed school environment is now achieved by realizing I am, more than ever, capable of sounding out. So, yes, I am surely mourning something I loved, but as Sufjan Stevens says, “All things go.”