Life is a challenge to not only remain afloat, but swim confidently amongst the current of emotions, thoughts, and experiences seeking to wash us away. Every day we juggle what’s in our minds and hearts with external forces – relationships, news (good or bad), work, et cetera – that influence the decisions we make and sculpt who we become. None of us have a raft to rely on, and in the cases where we think we do, we’re really just carrying some baggage further complicating the circumstances. The inevitable embrace, facing reality in real time, is our saving grace. But, it’s simultaneously a graver task than most are ready to complete.
I was in the hospital for what felt like a lifetime and still no diagnosis had been declared. My mother’s nerves were gradually short-circuiting aside my adjustable bed as she awaited some clarity. So far, doctors and nurses had drained blood from my veins and fluid from my spine and attached me to a electroencephalography machine that recorded my brain’s electrical signals. If I experienced an episode, I was to press a button that would alert the nurse on staff to come and scan the monitor hooked up to the device. But, no useful signs emerged and all blood tests came back negative.
It was the summer between my sophomore and junior years at Iona College. I was set to begin work as a security guard at Yankee Stadium when an unstoppable facial tremble drew dramatic concern. My right cheek seemed to be dancing to techno music as it pulsed sporadically, confusing me and my niece who was visiting that day. I watched my face seizure in the bathroom mirror, puzzled, fist inside my mouth trying to pull myself back into symmetry. A visit to the emergency room at Montefiore Medical Center would uncover spots on my brain and prompt a prolonged stay in their facility. The sucky part was that I didn’t get the call to return till I was ironing my clothes for my first day at the new job. Initially, they released me as if everything would be fine.
My time in the hospital was marred by inconvenience. First, I was re-positioned to another room because the previous accommodation housed bed bugs. My mother had to disinfect our clothes and sanitize the room as a preventative measure. (Need I touch on the irony, here? I’m in a hospital for God’s sake!) Then, the resident doctor who performed my lumbar puncture couldn’t locate the fluid he needed to sap from my spinal cord, consequently making the process brutally long. Imagine having the doctor hit a nerve that makes your right leg jerk violently enough to kick a forty yard field goal. Curled in a ball, sweating and exercising my pain threshold to its limit with a five inch needle lodged in my lower back, I prayed the operation would end for my mother’s sake. Her sweaty palms clenched mine as she pleaded with the Creator to guide us through the ordeal. Things only worsened later.
Doctors had ordered CAT and MRI scans but unfortunately for me, the procedures weren’t done until I was recovering from my spinal tap, which left me with a severe case of spinal headache, a debilitating migraine catalyzed by too much spinal fluid leakage. Standing or even sitting up for too long greatly exacerbated the condition. The pain would easily push the Heavenly Father to take His own name in vain. Recommended resting time off your feet is usually days afterward, yet, here I was, no longer than half an hour later, being escorted in a wheel chair from room to room to stare at flashing images on computer screens while someone studied my brain activity chart for any anomalies. The throbbing in my skull felt like my brain was imploding in super slow motion. Think Michael Bay experimenting with CGI effects.
But, as time passed, visitors came and went – mostly family and a few close friends – and doubts began to infiltrate my optimism. I wondered how bad my condition really was. I felt as though the news was so horrible it was too daunting a task for any messenger. Notwithstanding my frustration, I knew the protocol in hospitals; the doctor has a responsibility to exhaust every possibility before reaching an accurate conclusion. As time-consuming as it was for the physicians to reach a verdict, it has taken me ten times as long finding the wherewithal to cope with their assessment.
The test results were indicative of an auto-immune disease that hinders the nervous system, essentially retarding the signals the brain sends to the body, called Multiple Sclerosis. Doctors warned me that recipients endured harsh neurological damage including limb weakness, bladder problems, impotence, fatigue, dizziness, impaired coordination, slurred speech, and blurry or complete loss of vision. Each person suffers from different deterioration so my symptoms would be varied and unpredictable. The only positive crumb was the fact that my condition was “relapse/remitting”, the disease’s lesser version which attacked in temporary bursts called flare ups but then subsided. Proper medication could stretch my well-being to old age, although nothing was promised.
Even still, mentally, the news never quite settled, instead, it floated around like a plastic bag being pummeled by the weather on a windy day somewhere in my mind’s nether region; a dark truth I just couldn’t get a grip on. Perhaps, it was due to my recovery. By the time I was released, my symptoms abated. The facial tick was gone. Even the spinal headache disappeared. My strength and stamina returned and I even had sex with my girlfriend one of the last days I was there, realizing a fantasy I didn’t even know existed and quelling any lingering doubts about intimacy capability. So, when the dark revelation finally surfaced, confusion and numbness were my immediate responses. I didn’t understand the sickness entirely and I looked toward the future thinking only a few behavioral alterations were needed. No more heavy marijuana doses and passing out on my friend’s sofa after long drinking nights. Regardless, life should roll on rather normal because, ultimately, if I could live through the service in that hospital, nothing else stood a chance.
Here I am, nine years later, recovering from a relapse that seems to have left me with a souvenir to cherish for the rest of my life – numbness in my left hand that obscures every day doings – brushing my teeth, tying shoe laces, handling money, cooking, typing, playing video games, and so forth – and tingling in my left leg below the knee. The condition is called Paresthesia and it has put an indefinite strangle hold on my fitness goals, objectives I took very seriously and adapted a different lifestyle to obtain. Gone were the chips, sodas, and fast food. Enter the gym and evenings packed with circuit training and reading up on healthy alternatives. I wanted to look like a professional athlete equipped with the rippling physique that made women drool and guys want to hang out with me just to learn any training secrets. Despite such lofty ambitions, my dreams were crumbled up and discarded on the ground, left to be kicked around and stepped on by pedestrians. Now, I’m greeted by nightmares where I’m completely dependent on others, a vegetable, incapacitated and powerless; my worst fears rising like the tide in a sinking ship.
However, those same nine years have granted me the wisdom I once lacked. Granted, it took partial disability to galvanize my dumb ass, but, the very same truth I once tried to ignore in my immaturity has given me perspective as a young man. I see the winding road that lies ahead and I plan on hitting each turn in stride. Although I am not at my full capacity, and fear the disease worsening, I am grateful to be breathing and walking under my own volition. It might take me longer to type these words, but it’s a couple seconds more to evaluate my work, see it through better than before. My initial physical goals might never see achievement, then again, I did learn how to treat my body with the respect it deserves and feed it fuel instead of junk. That’s the battle’s harder half anyhow. I seek out my medication as opposed to allowing the complicated process of acquiring a prescription moonlight as an excuse to avoid taking it. Any help I can get, I will accept. And the added free time in my schedule provides a larger window to study the craft I was born to do: writing.
Things don’t fall into place, rather, they land very cavalier, either to your benefit or misfortune, all the same, it’s your job to adapt accordingly. Our perspective matters most. The way we choose to interpret life’s happenings is the deciding factor between health and ailment. Multiple Sclerosis isn’t a death sentence, nor is it the common cold. It’s finding the right balance in treating it that’ll best suit the carrier, like anything else.
I am not alone. There are others who suffer similarly. I am not defeated. There are people living with M.S. who have succeeded in their careers and personal lives. I’m just another one of those stories, hopeful and determined to endure.