Dal Long

July 1997

June 13, 1997: V-Day

I wanted to die. The pain was excruciating and had awakened me in the middle of the night. I couldn't straighten my arms or unfurl my fingers. "Is this normal? Are muscles supposed to ache this badly the first time?," I thought to myself, while trying to find a position which would lessen the agony of my strained limbs. I had accompanied a friend to my university's Fitness Center the previous afternoon and experienced my first session of weight training.

I had not wanted to overextend myself, and thus kept the Nautilus equipment set to reasonably low weights, but apparently my body was protesting this new, unaccustomed strain anyway. I was not surprised. Years ago, the doctors had warned me my muscles would be unusually weak. Exercise beyond physical therapy would not be useful. However, this foray into the Fitness Center was a test which had taken 12 years' resolve to occur. As a child, I thought my doctors' verdict to be gospel, and so I did not bother with improving the physical condition of my muscles. I did not particularly like physical activity anyway and just used the excuse, "why should I try to exercise? It wouldn't help me, I would be wasting my time." Not any more. I wanted to put my doctors' words to the test and see if I couldn't achieve some sort of muscle content in these wiry and almost pitifully thin arms.

As a child, I suffered from a rare disease called meningeal encephalitis, which attacks the brain stem and nervous system. I don't know how I caught the illness. The doctors theorize it may have been transmitted into my blood stream by an infected mosquito. I struggled with the illness itself for a year, missing nearly the entire third grade, and sending doctors all over the region scrambling to diagnose a multitude of unusual symptoms. After eight months of flickering in and out of comas and watching my body -- and my comprehension -- waste away, one of my doctors surmised I might be suffering from encephalitis. This diagnosis was of little use to me, as encephalitis has no known cure, and an overwhelming majority of its victims die. Most of the survivors are frequently brain-damaged or physically crippled.

I knew I was dying. Even eight-year-olds recognize Death when it reaches out with its slow embrace. The doctors prescribed experimental medicines, round-the-clock IV's, and ordered painful spinal taps and brain scans, but ultimately they were forced to inform my parents that there was very little hope left, and if I were to survive, the effort must be all of my own.

I wasn't going to let myself die. I laid in my hospital bed, barely conscious, numb to the incessant sequence of IV's which punctured my veins, and uncaring toward the grieved but soothing words of my family. But I refused to allow myself to give up and submit to this strange, incomprehensible sickness which had invaded my body. I said to myself, as often as I could, "I am a fighter...I enjoy life...There are so many things I want to experience...I will survive...I will survive...I will survive..."

And I won. Miraculously, I fought the encephalitis off, and my fever of 104 degrees broke without an apparent cause. However, the disease ravaged my body. It left me in a wheelchair for a long while. Nearly 70% of my muscle tissue was destroyed, and some of it is permanently scarred. I was unable to control my motor coordination at all, or even keep my hands from shaking uncontrollably. My reflexes were non-existent and my limbs only barely responsive. I used to sit in my wheelchair and sob when I couldn't keep my fingers from involuntarily throwing my forks and food to the floor. I cried a lot when I saw other children running around and playing, and I knew I couldn't hardly stand up without collapsing from exhaustion.

I worked the muscles in my legs for a long time. Each day I would force myself to lift my legs higher, take longer steps, stand for greater durations of time. Eventually, I could walk normally again and even run. Controlling my hands took many, many years. Every day I would hold my hands in front of my face and slowly touch my fingers to my nose. I tried to dominate the jerky, afflicted nerves in my hands and make myself normal. Often I jabbed myself in the eyes when my hands spasmed. It took intense concentration and determination to hold my hands completely still, and eventually it worked. Today I am 20 years old and suffer no ill-effects other than I am not as strong and heavy as I should be, and my gait is slightly uncoordinated. My brain, thank God, was only very minimally damaged. After awaking from my final coma, I no longer had any concept of mathematics or spatial relations. I still find these subjects terribly difficult to grasp, but this is a small price to pay for my recovery. My inability to perform higher mathematics frustrates me, but also provides me with a reminder of the vital and amazingly powerful will to live I found buried deep within me.

Today is June 13th 1997, the thirteenth anniversary of my discharge from the hospital. I decided earlier this summer I would try to vanquish the final vestige of the disease. My muscle tissue had badly scarred, and the doctors did not believe the scarring would allow maximum development of my muscles. I'm a tall person, and I'm tired of looking scrawny. So I promised myself this summer I would try the weight lifting which my doctors said would be futile, and attempt to build up the muscles in my arms and upper body which I so badly lack.

I don't know if I will succeed, but I know it doesn't really matter. I am alive. I fought the most difficult struggle I shall ever have to endure. I fought for my life, and I won. Yes, I'm bisexual and I live in a hostile world. Yes, I'm also Muslim and live in a hostile world. Yes, the concepts of coming out and dating and wanting to find a wonderful man or woman frighten and confuse me. Yes, I will face the fear and prejudice of others. But I am a strong person. I know I shall overcome.

Send me e-mail! My "in" box is empty! My address is "dallaslong@dialup.websteruniv.edu".

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