Coping with cancer became part of our Catholic DNA.
It’s been said that every common thing elicits and supports a miracle. This is an idea I used to hold onto. I used to think that it galvanized my belief system. It didn’t. In fact, I think it may have done the opposite. It diffused it. There is no risk in seeing the ordinary as something special. There is no heavy lifting. No venture. Belief in miracles requires real faith. And real faith requires endurance. Bravery. Work. This is a story about all those elements. But at the core, it is just a story about a woman with cancer. The woman’s name is Mary Beth Carey and she was my older sister.
Life Begins
My earliest memories of my sister Mary were of laughter. The first year of my life I slept in a crib at the foot of my parent’s bed. But the moment I could slide out of it, I did so to amble over to Mary Beth’s room, where I would climb into bed with her. As a toddler I had a hard time with "r’s." So my older sister became "May." It stuck and I’ve called her that ever since.
May always had the gift to crack me up. She was a spot-on mimic. A natural ham. And loved an easy audience. So while most kids spent their early ages crying to sleep, I spent mine laughing to sleep with my sister May. This lasted until I was about three. By then, my sister Ann Marie was born and I was moved into my own room; a room that would quickly be filled up with boys.
Along with her humor, my sister had a number of other characteristics that she would carry into her adulthood. Not all of them great. She was stubborn as a grass stain and possessed my father’s volcanic temper. As a side dish to that, she had sense of revenge that Jigsaw would envy. She also moved at 110 miles per hour and had a penchant for clumsiness, often bumping into objects both stationary and moving. This would become harrowing later in life when she received her driver’s license.
However, it would be May’s better qualities that defined her. She always possessed an incredible, infectious life-force. She was fiercely loyal. Hugely generous. And most of all, exceedingly compassionate. She was just so kind to everyone. This led her to hundreds of childhood girlfriends that were a hodgepodge of cheerleaders, nerds, snobs and outcasts — and every one of them thought that she was their "best." May was not merely an inherently good person — she was ethereally good. It was a goodness that radiated from her. She was the closest person to the truth that I ever knew.
May loved life and lived it with abandon. In fact, everything she did, she loved. And her zest for life was never reserved for vacations, parties or outings. She treated even the most mundane tasks as something akin to epic. For May, a trip to Costco was as good as Club Med vacation. A rental from Blockbuster was as good as any Broadway play. And she would enjoy a crummy, local cover band as much as she would sitting fifth row for Bruce Springsteen. That was May.
May was quite the looker in her adolescence. I didn’t really know this until I reached high school. I went to Detroit Catholic Central, which was all boys and it was a well-known fact that the upper classmen there routinely beat up on freshmen. One time early in my first year, I was afraid to go to class because I had to cut through a wing where the juniors and seniors kept their lockers. A friend and I decided that we would just wait for the bell to ring and take the demerit, but one of my other classmates talked me out of it. He said, "Go ahead, they won’t touch you."
"Why not?" I wondered.
"Because your sister is pretty."
She was. Mary Beth was a tall, cinnamon-skinned beauty with big brown eyes and long legs. At the time, she was a junior at our sister school, Our Lady of Mercy.
"What about me? I got a sister," my friend chimed in.
"Yeah, you do," my classmate said. "And she’s ugly. You better stay."
May was the first in both of my parent’s families to go to college. This was a new benchmark for our family, one of which we were all proud.
After college, May did what most women in the Midwest do; she got a good job, worked it for a bit until she met and fell in love with a man. She then gave birth to four children while working part time. Life for May and her family was good. They had a big house with a pool. Vacationed in Florida once a year. Had nice things. It wasn’t always perfect. Her youngest had been born with Down Syndrome. Economically, things were getting a little tight in the Detroit area. And generally, life isn’t always a joy ride. But still, May’s life had a rhythm. It had joy. And most importantly, it had meaning.
But life changes. Suddenly. Radically. Nobody needs to teach us this. In fact, most of life’s "event" changes are what we’ve come to expect from our unpredictable journeys. And most of the time we regard this change as good. We change jobs. We fall in love. We have children. Other times, change is difficult, challenging. We lose our job. We get divorced. We give birth to a special needs child. And then there are those other times where life takes us in a place we didn’t expect to go. Sometimes it comes with a phone call about the sudden death of a loved one. Or sometimes it’s a horrible accident that touches someone close to us. Or sometimes we go see a doctor for what we think is just a sore throat and we find out it’s something different. Something that we hadn’t seen coming. Something that might take our life. May received such a call almost five years ago when she was diagnosed with esophageal cancer.
It was Christmas Eve, 2009.
Life Changes
From the very moment that May was diagnosed with cancer, she was absolutely convinced that she would beat it. The prognosis wasn’t good. Though doctors did discover the cancer at a relatively early stage, the disease was located in a very precarious place just on the border of her esophagus and stomach. This meant that spreading would be more dangerous, effecting two major organs instead of one. Doctors recommended aggressive chemotherapy and radiation.
May refused. Instead, she chose a different path; a path that included a small amount of holistic medicines and a heavy amount of prayer. May wasn’t entirely certain of her holistic path, but she was no dummy. After an exhaustive study of all treatments related to her cancer, she hand-picked a variety of medicines tailored to her particular goals. She calculated the odds, took into consideration the quality of life each treatment would come with and stood by her decision. Everything else she put in God’s hands — and this she was absolutely clear on.
For a brief time, May’s path seemed to be working. The prognosis of her cancer didn’t burden her. In fact, it seemed to invigorate her. She became more active in her community. As a professional child advocate, she doubled her workload. And after four children, despite being in excellent physical condition, she even increased her exercise. The results were impressive. Within a year of her diagnosis, she looked better than ever, was happier than I’d ever seen her, and she never, ever even mentioned the fact that she still had cancer. Because for May, her mind was already made up. She didn’t have cancer. Her faith told her so. And May knew she had beaten cancer because of one simple reason: May believed in miracles. Always had. And not the Hallmark kind; sunsets, caterpillars changing to butterflies or childbirth. May believed in big miracles. She believed in the supernatural, larger than life, dead rising, blind seeing, crippled walking kind of miracles. Her God was a great and powerful God. And her faith in Him was unrelenting, more passionate than anyone’s I’ve ever witnessed. So curing her cancer was nothing for May’s God.
A Question of Miracles
While our entire family was thrilled with May’s health, behind her back, many of us shook our heads. Midwest culture doesn’t foster "holistic." We like our drugs made. And if something isn’t working, we remove it and put in a new part. So even though May seemed okay, we wondered why she continued with her life as if that phone call had never come. We wondered why she never returned to a doctor to see what had happened to the cancer. And we wondered why it didn’t feel like a miracle. There was no manifestation of a divine act – or at least proof of one. We all wanted to believe that a miracle had happened, but mere belief in a miracle alone does not produce one, does it? I didn’t think so.
I never believed in miracles. I know this contradicts just about every aspect of my Christian faith. And I know I could be pointed to hundreds if not thousands amazing, wondrous works of the divine. But miracles have always been a catch-22 for me. If miracles really happened, I wouldn’t need faith, would I? It is the only thing that May and I ever disagreed on.
Living with cancer
Before my sister May, I had never experienced cancer first hand. I didn’t know what to expect. But even if I did, there was nothing that could have prepared me for it. The best way I could describe my experience with Cancer is this: Cancer is eponymous and is a disease that spreads to everyone who is close to it. In other words, the cancer may have started in May, but it spread to my entire family and all who loved her. It may have been of a different form, but it was still cancer; malignant and creeping slowly, causing us all to suffer with her.
May’s cancer began on Christmas Eve of the previous year. And our cancer began a little more than a year later when it became clear that May wasn’t going to receive any miracle. It started with small signs; her loss of weight, her diminished energy and most sadly, her physical pain. As her health declined, we debated over what course of action should be taken. We fought over who to include in the process. And we argued on almost everything. How much should her children know? Which relatives should we tell? What do we say to those who ask about her? Naturally, everyone had an opinion because we thought the cancer belonged to all of us. But at the end of the day, all decisions were May’s. The cancer may have belonged to all of us, but it was she who owned it.
It all burns down
Dealing with pain and suffering is very much part of the Catholic DNA. The very icon of our salvation hangs on wooden cross, bludgeoned, in misery and on the brink of death. And we love it. We love it because we know His pain and suffering led to resurrection. And His resurrection led to deliverance and redemption. So we like to think that our own pain and suffering can lead to the same. But sometimes it doesn’t. Sometimes it leads to bitterness. Sometimes it takes us to anger. And sometimes it leaves us in a meaningless void where there are no answers, only more questions. As May’s condition worsened, this is where most of my family found ourselves. We were helpless as our sister, mother, wife, friend suffered. And we were exasperated by the fact that May still held onto the hope of a miracle, clinging to it so tightly that she forewent all conventional treatments and pain medication. (May feared that when her health returned she might be dependent.) But instead of letting the process transform us into something better, we transmitted everything that was bad about it onto one another; our fear, our anger, our frustration. We let the cancer become us.
My mother had always been the moral rudder for our family. And it was no surprise that she navigated this difficult time for all of us. My mother had always preached to us to find the meaning in everything. Life, she stressed, was not about joy — but about meaning. Each and every one of us would have to find meaning in what was happening. And unlike May, our cancer wasn’t dependent on treatments or miracles. We could conquer our cancer. All we had to do is not let it conquer us.
Unfortunately, I could not find any meaning in May’s cancer. Not only was I was angry at God that he was taking her, I was angry with Him because he had given the cancer to her and not to me. I was better suited for it. I didn’t have a home or community I cared about. And I didn’t have four children or a spouse that depended on me. And I couldn’t find any meaning in watching my sister spit into a cup for hours and hours and hours because she couldn’t swallow. Or doubled over in pain, coughing up blood, unable to sleep. Or watching her pray with such fervor to a God we both believed in — only to see, hear, feel nothing. May always wondered why I didn’t believe in miracles. I wanted to tell her that she was the very reason.
I can not adequately go into the depths of suffering that followed. I can only say that there were estimated dates that came and went. There were feeding tubes and catheters. And there were fevers and infections and pneumonia. But even as all these passed and we watched May evaporate before us, there was no death. Death would not come for her. And this was the hardest part. Death would not come. My brother summed it best when I desperately asked him what we could do? "There is nothing," he said. "We can only watch as it all burns down." And so we did. And every day seemed to be a new, wretched low.
The nadir of this tragedy finally came at the beginning of last year. And that’s when I received the phone call. It was one of those 3:00 a.m. calls when the tone on the other side of the line immediately suggests dour news. I knew immediately that death had finally come. And it did.
It took my mother.
Lessons of my mother
As awful as this sounds, the sudden death of my mother was actually a relief to our family, who were so engulfed in the pain and suffering of my sister. Though we were heartbroken, we were content knowing that she did not live long enough to bury her oldest daughter. It also provided a clear perspective on how to carry forward with our lives. My mother had lived every day like it was her last. She loved every day like it was her last. And she was grateful for every day as if it was her last. Though none of us had the chance to say good bye to her, there was no need. My mother ended every conversation with "I love you." She left nothing unsaid.
With May however, it seemed like everything needed to be said. We all wanted to connect with her so badly, but she didn’t want to let anyone in. And even though we suffered with her, she would not allow us to share her suffering. So as the end neared, we were often shooed away, closed off, left out. This left me particularly embittered. For my entire life, May had been my greatest advocate and confidant, and just I needed her the most, I was losing her. So instead of growing closer to her during her last months of suffering, it seemed we had actually grown apart. And while neither of us ever said anything, the disconnect was something that lingered in the air between us when we were together.
It has been said that the price of love is often suffering. But the power of love is something altogether different. It has the ability to heal all inevitable wounds left behind by suffering — through Christ. My mother was right. She usually was. Each of us who loved May could find the meaning of our own suffering. But to do this, we would not have to fight or fix all the wounds that were building around us. Instead, we would have to do the opposite. We would have to embrace them. And to do this we could not feel slighted by the way May chose to deal with her illness. She was on her own journey. And we would have to love her the way that she was in the end, not how we wanted her to be. After all, the cancer was her’s. It did not belong to us.
End of life
We took shifts watching my sister die. I had the early hours, from about 8:00 a.m. to noon. My brothers, sister and close relatives would take turns throughout the afternoon and May’s husband and kids came at night and stayed with her through the morning. As the end neared, my sister finally acquiesced to the powerful dosages of liquid morphine offered her. But even then, she experienced what the doctors at hospice described as "breakthrough pain." Compounding her suffering was the length of it. Esophageal cancer is notoriously slow-moving. And because May’s heart was still young and strong, she was able to live much longer than was estimated. But this made it all the more heartbreaking. Her one-time beautiful face, sallow and broken. The sinewy frame of her youth now almost diaphanous in its thinness. And that non-stop, sweet voice of hers reduced to silence.
In retrospect, I suppose we all needed the time to find our meaning. And sharing the sorrow with my family also allowed us to grow closer in a way I could have never comprehended. Because of May there is a deeper love and admiration between all of us. May’s husband and his family also handled everything with an uncommon grace. And I am still moved by the outpouring of love from extended family friends. Not all of them are believers, but I can tell you that my faith is greater because of them.
Eventually, I found my meaning in the early hours of those last days spent, watching May sleep. Hovered over her bed, I was taken back to the days of my boyhood when I climbed into bed with her and we would laugh until I slept. All bitterness lifted and though moments of lucidity were rare, they came with the gentlest of brush strokes. My hand in hers. A glint of understanding in her eyes. And an apology in mine. I was sorry I never believed in miracles. I should have. She was the very reason.
A lot of people ask me how my sister May managed to live so long. I suppose there are medical reasons, some of which I have mentioned. But I know the real reason May lived longer than anyone expected is because May loved life. She should have. She was so good at it.
Mary Beth Carey died June 29th 2013. She was 49 years old.
P.G. Cuschieri is a writer who lives and works in Los Angeles. He is a grateful brother, uncle, friend and a proud Roman Catholic.
