You Just Have To Be Uplifting

In the Depths of Human Circumstances

Michael wrote this piece when he was initially refused entry into the National Honor Society. He was told his grades were certainly good enough, but he lacked the necessary community service needed to be accepted. In true Mikey fashion he fought for what he believed in.

Is the value of community service measured in time or in effect? Is leadership the governing of people during an event or helping those in need, inspiring them to follow your lead? Through my experiences, I have concluded that for both questions, the answer is the latter. I may be unable to fill out the sheets of community service and of leadership positions I’ve held in high school. But I am at no loss of inspiring others to follow my lead and providing an invaluable service to the community.

Facing the Edge of Death and Back

In the middle of my freshmen year of high school, I was diagnosed with an extremely rare and radically aggressive soft tissue sarcoma. A cancer known as Desmoplastic Small Round Cell Tumor, or DSRCT. A cancer whose prognosis is termed “grim” by experts in the field. In fact, the number of documented long-term survivors can be counted on one hand. I began my chemotherapy regimen. An aggressive cancer requires equally as aggressive treatment. The chemotherapy medicines I received are some of the strongest toxins known to man. After three rounds of high dose cyclophosphamide, doxorubicin, and vincristine, and one round of iphosphamide and etoposide, I was ready for a second surgery. A two-foot scar down the center of my stomach marks the entry of probably the most invasive surgery possible. After seven hours of debulking, two more iphosphamide and etoposide rounds, I was ready for what doctors and nurses have termed “the edge of death and back.” The high dose chemotherapy treatments I received before were about one-twentieth the strength of those I would soon receive. Eight days. Eight days of radical toxins that could kill a human coursed through my veins. Only by implanting stem cells that were extracted from my bone marrow months earlier was survival possible. For the sake of sparing inhumane details, I’ll only say I was released twenty years later. Or was it one month? I cannot tell.

After the stem cell treatment was radiation. Not just normal radiation, but radiation that was spread over a notably wide field, for the diffuse nature of these particular cancer cells makes them impossible to pinpoint. The microscopic disease could be anywhere in the abdominal region. I did not know the worst was yet to come. A couple days before the holidays in December, disaster struck once more. I was diagnosed with V.O.D, Veno Occlusive Disease. Agonizing. Incurable. Highly fatal. The veins carrying oxygen-rich blood to my liver became occluded, choking my liver and damaging it severely. Since there is no cure, survival is left to luck. Either the condition slowly fades away, or it worsens, choking off kidneys, lungs, heart, and brain. A doctor said to my dad, “Despite everything he’s been through, he has never been as sick as he is now.” You never appreciate the functions your liver provides for you until it stops working. Most notable is the fluid buildup in the abdomen that requires draining by a needle over one foot long, long enough to penetrate through every layer of tissue into the peritoneal cavity. Over a month later I was released, but not without a tube in my stomach to continue to drain the fluid.

Cancer is the Answer

My approach to the entire situation has been humor. Believe it or not, I found light in the darkest depths of human circumstance. I was constantly uplifting. I had to be. I had to be me. While other patients lay sick in their beds, I chased family members around with the I.V. pole. I have seen the power of cancer. I saw my step-mom and my mom hug. That is power. And soon a sadly ironic, jokingly unfunny catch phrase emerged: “Cancer is the answer.”

Someone once told me, “You don’t know it yet, but we are the lucky ones.” But now I know it. I have found a new definition of what it means to live. I have seen what it means to die.And I have passed this information on to others. Which leads me to my community service, to my leadership. A business associate and close friend of my aunt was recently diagnosed with a massive brain tumor. Having knowledge of what I had been through and seeing me as an inspiration, he asked to see me. I was happy to oblige. So, I, a recent cancer patient, entered the room of a man with a tumor stretching from the base of his brain stem to behind his right eye. He asked everyone to leave the room and I began talking. I began with the bit of knowledge that I had received: “You don’t know it yet, but we are the lucky ones.” And I explained it. I talked to him for about ten minutes. Before I left, we hugged. As I soon found out from my aunt, he said that I had forever changed his life, that he will never forget the words of explanation I gave him, that he will never forget how I helped him remember life. That I had given him a gift.

Recently on Yom Kippur I read a Torah portion in front of the congregation. I do not particularly like learning long bits of prayer in another language, but I did it for the people there. I know that many of them prayed for me during my hard times and I wanted to show them my gratitude. And, as I was told, I inspired them. Tears fell from many family friends’ eyes as they watched me, a recent patient of a highly fatal cancer, stand strong at the podium and sing loudly, reminding them of life.

You Just Have to be Uplifting

I cannot wait to continue this path of leadership and service. In fact, I will devote the rest of my life to helping others who are in my situation. Inspired by the brilliant minds that helped me to live, that helped me to get back to the features of the child’s life like school, friends, and mindless pleasures, I wish to become an oncologist. But I will be armed with a tool few have: empathy, not just sympathy. And not just several years from now when I am a doctor. But even now. I started a non-profit organization called the Mikey’s Way Foundation. Its purpose is to help kids cope with cancer by providing electronic games and high-end toys for kids and teenagers as distractions. We have already raised over $150,000 in 8 months and have been on national television as reminder of life through cancer. I will continue to spread the knowledge I have gained, to spread the light side of cancer, to help people understand that laughter really helps you get through it. Like I told Joe, the man with whom I spoke, “You just have to be uplifting.”

So there might be a dearth of community service time and leadership positions on my résumé. There may be many others who have spent hours helping the poor, or who have organized youth league sporting events or fundraisers. I did not have such opportunity. If only every child could participate in such appropriate undertakings, to not have seen what I’ve seen, to not know what I know. But we do not live in that world. Children die every day. I know some of them by name, for I’ve met friends along the way. Some who have lived, some who have died. So maybe I do not have the hours and positions that others have. But I have something greater. A message I carry deep in my heart. A message I pass on to others and in doing so change their lives. Make them see. They follow, like Joe, the inspiration I have given them. And therefore I am a leader. They say I have helped them survive, helped them struggle through their endeavors and possibly see light on the other side. Therefore I serve the community. And I continue to spread that message: “You just have to be uplifting.”