A Brother Lost: A Sister's Journey
The First Chapter
Of course I did not know. The gifted opportunity for breathing, space and time in the face of reality, so much pain that God made sure to shield me. Grace defined in its very nature. I quite remember the seconds that lapsed as I was instructed on the definition of grace by a far away Christian woman on a Bible study television screen. She said in not so many words that grace was when God protected us from the terrible and yet, we had not a clue that it was grace that had allowed us to live through the unthinkable. If you have ever found yourself saying you don't understand how so and so has dealt with their terrible predicament, it is because you watch from a distance someone covered in grace. At that moment grace was first defined for me, I remember trying to catch my breath and the sting in my eyes, as I began to swallow sobs, fumbled with my belongings and exited as unobviously as I could manage in a room full of women. I wondered if anyone was struck by the terrible wonderfulness as much as I was? I dumped by Bible, empty coffee cup, phone, pen and random baby items onto a high backed chair outside our Rector's office and rather than fleeing into his space for words of comfort, I retreated into an empty lavatory, its' location only known by church members and untouched since it's' construction. A lone sink, chipped tile, faded paint and toilet. I sat and cried and cried and cried. Not a volcano spillage of anger but the shaking sobs of relief, acceptance and an overwhelming feeling of comfort. He had been there all along after all. I had blamed my youth, my over privileged innocence and had wondered silently and berated myself for countless hours; how had I watched my beloved brother slowly die and not ever, not for one second, realized that his end was drawing near?
This was a question that plagued me not only the rest of my teenage years, but all of my twenties and now almost 20 years later as I approached my mid thirties, wife and mother to three children all under age three, I had received the one worded answer that had mystified me. Grace. After all, I was no longer a child and had turned from 14 to 15 and had spent every weekend from October through January in a hospital in Durham, a hotel room down the street and waiting room filled with uncomfortable medicinal blue chairs and light oak tables scattered with Redbook magazines. Each Friday afternoon of those four months, never with an exception, I would wait at the end of a wide brick walk, standing alone with my backpack and Laura Ashley duffel bag. As planned, the white mustang would pull up and a classmate of my cousin, now a student at Wake Forest, would collect me with the reasoning he enjoyed going back home to his small Eastern NC home and it was no trouble to detour to Duke Hospital. In looking back, the worried blond 14 year old girl away from home for the first time had probably inspired the popular Wake Forest fraternity boy to make the weekly drive that gave exhausted parents a much needed help and gave a lonely girl a friend who offered silence, music and a friendship that seemed perfect. I was safely deposited week after week at the front doors of the hospital that had become home to my brother and parents, out of the car that was filled with warmth and comfort into a place void of color, warmth, and for us, any real reassurances. On Sunday, my friend would drive up again and I would climb in for the much needed hour and a half transition as I physically and mentally left a sick brother, devastated parents, an insatiable fear and headed towards my temporary home. Salem Academy was and still is a large brick building, complete with dormitory to the left, classrooms to the right and dining room and auditorium below. High on a hill overlooking tennis courts and playing fields, Old Salem complete with cobbled streets, a bakery, and a Moravian church that I rarely could bring myself to enter. Week after week this journey was repeated until the decision was made or truthfully that the difficult details had been secured and Adam would be flown to a city far away, Boston, where maybe a new group could offer insight into a family clinging to hope. I made the trip there twice in the few months that Boston was home to my parents and brother. Never have I detested North Carolina than I did in those hours, days, weeks and months that I could not take refuge in a Mustang and be completed just by the physical presence of my family, one brother and two parents. I remember the terrible isolation I felt despite the classmates, faculty and older students that took me under their wings to go out to dinner, home with them on a weekend or a lounge to watch Stealing Home and allow myself a few rare tears under the microscope of my peers. All the while, I never ever contemplated the possibility of death of my most loved person on earth. Not even for a second did it flash into my young curious worried mind to even be suppressed quickly and earnestly by a wave of denial that would have surely been necessary for my survival that Spring twenty five years ago. This was my GRACE. Such a gift that I was made totally unaware of the beautifulness of it all. My overwhelming worry, sorrow, anxiety had propelled the charming blond girl from an idyllic childhood into a scary land of life, the life that we all would experience sometime though mine had come a bit too early and Adam's even more. These feelings were truly overwhelming and if GRACE had not been offered so freely to me, I very well would have been broken by it all. I was barely hanging on as it was and a bit annoyed at God that point; truthfully, if I had needed to seek grace or even if it had been offered, I am sure my rebellious spirit very well would have said no thank you and added the burden of impending death and that would have broken me. GRACE, mine for the taking, never deserved, a gift only from a sovereign God that promised He would share my sorrow when things went awry. Terribly awry.
The weather turned warmer, dogwoods bloomed and finally, a proper diagnosis. A diagnosis had eluded my family for 10 months now and the disease that had destroyed my brother's ability to walk, move, laugh, eat, smile or speak was finally given the right name. No longer would his diagnosis be "Harrold's Disease", a name coined by a puzzled group of the brightest physicians at the best hospital in NC and who were unfortunately very wrong, not that having an illness named for you indicates there is much hope. It was cancer after all, despite the many assurances that at the very least, it was certainly not cancer. Not that it would have mattered for saving his life anyways but now two parents and a sister had a word, something to tell the many people that asked and offered dead end leads. The diagnosis of cancer was revealed by a biopsy of one of the six brain tumors that had infiltrated Adam's brain that prior summer after the lung tumor had been removed and a joyful family left Duke full of joy and relief. For the remainder of the summer he recovered, spent his days on a boat, swam in the ocean with his delighted sister while his friends trudged off to their beach jobs and happily fulfilled his duties as marshall to a debutante, widely thought to be the most beautiful that year. Her friends had voiced their horror when she dumped the Porsche driving soap opera actor, but she only had eyes for my lovely and fun brother and what a gift those six weeks of parties were for Adam and my parents. Those tumors were hidden still and by fall had begun to mar Adams ability to remember and keep up the pace of a typical college boy. By Christmas the disease had consumed all I had ever known of the kind, handsome, funny, loving and most selfless individual that I still have ever encountered. Malignancy evident from an innocent glass slide under a microscope and the team in Boston pronounced a name beginning with fybroblastic hysteosytoma plus several more innocuous words that collectively were scientifically meaningful and sounded impressive, though not to three people eager for good news, or at least one person. Hearing cancer was a tremendous blow.
As grace shrouded me, I moved through the last six weeks of school, eager to leave that place and as I prepared poorly for a Latin exam, my parents made arrangements for Adam's journey home, back to NC but not to Durham. This time he would be really home, at least in Rocky Mount, even if a small community hospital but a place that could care for him and welcome his innumerable friends who could park at the door, slip in and out of the simple entrance, walk up one flight of stairs and stay and visit as long they liked at any hour of the day. My mother would almost smile as she read the notebook entries from visitors late in the evening or early in the day while she was still in the throes of fitful sleep. The tattered yellow journal that Adam had begun was still continued by me as I documented the grown up words, scientific names and wrote in my perfect cursive of yesteryear that my parents had told me they had told the doctors they did not want to know any more updates on where the cancer had spread and that there would be no more tests. Reading this now, I stifle a sob and tears but am overwhelmed with the grace that was so freely given- the words now scream at me that He is going to die and soon. But then, I just accepted that gentle offering from a mother and father that I am sure struggled with how to tell their remaining child her lifeline would soon be gone. I asked no questions, accepted their words without tears or really any sadness that I can remember. Instead I relished in Adam being home. I did not have a license but settled into a daily routine that was easy, not happy but there was joy. Most days I spent at the pool and then home later that afternoon for an early dinner and then on to the hospital with my parents and they would retreat and I would nestle in a chair as close as I could get to Adam and sleep soundly through the visitors that had come and squeezed his hand and often written a note to me in the messy handwriting of a college boy or girl. My mother stayed during the day and I took the nights. My dad was in and out, unsure of what to do as his role had been guardian, asker of the questions, destination decision maker and researcher, treatment enforcer and loving father to his only son. The summer progressed and as June turned into July I began to worry about August and when it would be time to go back to school. I had grown used to my easy schedule and while Adam hadn't spoken to me since April, I enjoyed his physical presence more than would have seemed possible or comforting. I talked and talked, played music, squeezed my small frame beside his tall one on the narrow hospital bed and rested there while we breathed sharing the same tempo. If in my chair station, I would hold his hand, talking and asking questions, requiring a hand squeeze which I sometime thought I felt but I was never totally sure. I remember asking my mother what I should do about returning to Salem and that I hated the idea of leaving Adam. I had felt several times the previous school year and I think voiced that I wanted to be with them, not at school. I vaguely remember my mother telling me that school was my job and that Adam would want me there. It must have appeased me as he did love Salem and was in fact the one, not my parents, that had taken me there to visit and attend some classes and have lunch in the all girl dining room, minus a six foot dark headed boy with a beautiful smile and laughing dark blue eyes. It was a memory I had relished and the pride I felt with him could not have been captured in a net if it were butterflies because they would have overflowed and broken free. However, I did harbor a bit of resentment towards the fact that I had missed being with Adam in Boston and though I had quickly aged out of tantrums, I said aloud to my mother that I just hated to leave him and though I can not remember her response, I know it resonated with me to just wait and see. I did not wait much longer. I had headed to Atlantic Beach for a few days with my childhood best friend and her family who had rented a place right near our place where my grandparents were spending the summer as they has done for the last ten years. I stayed at our condo and spent most of my time with my friend Missy, where we moved back and forth a hot black parking lot that separated the two condos. After a day of swimming in the ocean and lounging at the pool, I called my mother that Tuesday early evening to check in on Adam. I offered up the idea that I could come home the following day with my friend's dad or wait until Friday when the rest of her family was leaving. All was fine she reported but as an afterthought she said, "but I miss you". That made the decision easy for this newly mature 15 year old, who a little over a year ago would have argued over the various expectations she expected regarding rides, staying out later than was allowed and arguing in circles regarding why being on a boat for 12 hours was totally safe. I replied that I would come home then.
The following morning I climbed in with Missy's dad and promptly went to sleep in the hum of the prelude and awoke only when the car pulled up to the hospital. I scrambled out and eagerly flew up the flight of stairs, happy to be reunited with my brother. As I pulled open the heavy white metal door, I came face to face with our minister who looked at me with such despair, the grace that had shrouded me the last 12 months, 365 days almost exactly, quickly melted away as quickly as it had covered me. I turned down the familiar hallway and there were people, figures now that have no faces, and as I went into his room I stumbled upon my parents who said quietly it would not be long now. They slipped out and I knelt at his bedside and clutched his hand, soft and pale and now a bit cool, in my small hand, warm and tanned golden from the sun. Hands that had always been identical now bore no resemblance of one another except for the short nails, mine rough from biting and his nearly clipped the last 8 or so months; the half moons though still small and very white on both. I don't remember what I said exactly or thought, only that I have never felt such a horrible sadness that covered me like a black shroud, the grace seemed gone and the dark enveloped me and the horror of what was happening was stifling and the goodbyes broke my heart. My moment was interrupted as figures returned, maybe a mix of family and staff and I squeezed his hand and exited, tears streaming and making my way to the stairwell and running to get out, it was as if I could not breathe and I began to sprint. I needed to escape the cold walls eminent with death and I threw myself outside into the humid air, bright sunlight, and I continued to run tears streaming, crying yet stifling sobs all the while. My grief was so palpable I can close my eyes and almost allow myself to slip into that far away place of brokenness, sorrow that at that minute was so intense I was running away from it but it followed no matter how I tried to escape. The time for grief was now and the preparation I had been shielded from by my parents and as I realize now, God Himself, was just for an instant a seemingly disservice and the pain too much. Maybe if I had actually known, had time to prepare, maybe....nothing. Nothing would have been better, only more sad, more repressive, faith stifling, months that had been amazingly enough filled with the most simplest of joys would have felt like this terrible moment of the finality of death. It was a time to cry and I continued to run and decided to get to my cousin, the closest to a sister I have had and I abruptly entered her place of employment, a nearby Pizza Restaurant, close to the hospital. I stood gulping the cold air, sobbing, tears falling and asked for her. Another employee hastened to find her and a kind woman approached me and in her kind voice, quizzically said, "Honey, has somebody hurt your feelings?". I remember the sense of relief as I continued to gulp sobs and tears fell, I said, "yes, someone has, they really have hurt my feelings". In that moment of the deepest sadness, I was struck with a second of humor and realized there was still joy deep inside of me. Certainly at that moment, not nearly time to be revealed but a lasting reminder that grief would not last forever. Perhaps a reminder of the grace I had received so easily, given freely to a sister that had not asked for help other than prayers of healing, healing that did not come the way I wanted, but ultimate healing and grace that covered me from long lasting bitterness, doubt, and true joy of time spent with a brother who never seemed in pain but quietly slipped away, made whole in a way that I had never even contemplated. Thank you Grace for being the what and when that saved me and perhaps my brother too.