In the back of my closet, I have an old yellow notebook entitled "Exam Notebook", tucked away the last two decades in an anonymous tupperware container, now smoky clear. The notebooks' still bright title is written in the childish scrawl of my own twelve year old hand. The very first page still makes me smile, a short list of my family members and a number beside their name and the word gifts. I remember counting the presents under the tree each year but had no recollection about my written documentation of this perceived unfairness. It was true of course, I had cemented the facts right there on a clean lined page, Adam had twelve gifts and Adrian had nine. It never occurred to me to consider that he would have far fewer Christmas' on this earth, nineteen in total to be exact.There are pages of drawings and games, an exceedingly long list of vocabulary words like stealthy, myopic, presumptuous, and yes, even miraculous. That word in particular stung me as the story that followed in the pages felt anything like miraculous to the family of the beautiful boy with a terrible & mysterious illness.
I gazed at the deep blue of foreign waters and read through the pages of what became his journal, my old exam notebook discarded quickly after a few study sessions. Yes, it had been transformed into a book of questions and a place to carefully record snippets of the words heard from his many doctors. Our entire family contributed unknowingly to this still-life snapshot of our lives, each of us writing our perceived truths. Adam had written early in his illness and documented the musings of physicians and detailed notes regarding his prompted careful diet and exercise routine. There were pages and pages of scribbled words repeating the espousings of those doctors, their words admittedly rooted in unsureness, regarding the six brain tumors that were blips on a thin black sheet, lit up by the iridescent light from the translucent board behind. Initially, the tumors were shrunken by lucrative exorbitant amounts of prednisone, Adam's once finely lined jaw bone overtaken by fluid and roundness. They were still lurking in the depths of his mind, woven in his brain and hiding behind the same unaltered bright blue eyes, similar to those waters. I scanned the carefully crafted cursive words of my brother, written in the days before he climbed in bed and never came out again, closed his eyes, no longer spoke or nodded his head. Though he never lost his ability to apply a bit of pressure when I squeezed his now soft hand. Perhaps I imagined it though, the shell of him so far gone that I needed just a glimpse of him to remain.
Names of doctors and their phone numbers on every page made me take pause and wonder where they were today and what they were thinking, what feelings had crept in their minds when they headed home late in the evenings, their days spent thinking about Adam. Over the years I have thought that I would like to gather information of that year, scientific documents to fill in the many gaps of my fifteen year old mind as well as the perspectives of those that cared for him. Any information would suffice, someone to share with me what they thought and give empathy to the little sister still suffering twenty five years later. I wondered if they remembered that beautiful brown headed boy with the lovely parents and blond younger sister. Did they remembered us sitting in the too cold conference room time and time again, listening earnestly for any bit of information, maybe perhaps shrouded in a bit of hope? Yes, they provided the words we longed to hear and the evidence is engrained in these pages, repeated in various fashions, there were no signs of malignancy. It would be months before we realized that it was cancer after all, though the outcome would have remained unchanged.
This notebook is all I have left of the last year of my brother's life. A compilation written by himself, my mother and father and finally, a little sister desperate for his survival and her words rooted in fear, but anchored in strength. The dichotomy that washes over me is overwhelming and I'm taken back to that day, the day I walked off a plane and my mother told me he was sick again. She tried to pull her trembling mouth into a smile but her beautiful blue eyes, the same as his, gave her breaking heart away. The story is not just mine to tell though my words grace both the first and last pages. The final entry was dated May 19th,1990. Adam was just nineteen and would be gone in just two short months.
This is the beginning of my first book, a story in which I shall play narrator. It will be told from the perspectives of a beautiful college boy, his sister, parents and even the doctors that have now come forward and are, I think, honored to share their remembrances of the case that defied their own thinking and shaped the lives they live. I hope it will ensure that Adam's story doesn't end with me. He was just too amazing to let that happen and the recounting of that year, though filled with sorrow and tragedy, is also an extraordinary presentation of love and one that I hope I can capture as a display of hope and resilience. Xo