Please enjoy John Legend’s Coming Home as this post’s official theme song while you read my musings below.
In Chinese medicine, many organs are associated with an emotion. My first acupuncturist once commented that it isn’t at all surprising that I feel such grief and guilt, given the amount of trauma my lungs have sustained; the lungs are associated with sadness and grief. They are responsible for taking in the new, like fresh, oxygen-rich air, and letting go of the old, such as carbon dioxide-filled air. My poor lungs have taken quite a beating over the years, starting when I was just 2½ years old with the rhabdomyosarcoma in my left lung and then the recurrent osteosarcoma metastases that bounced between both lungs throughout middle school, high school, and college.
Maybe she was right. Maybe there is a connection. It’s no secret that I have a huge burden complex. It’s part of why I have historically had difficulty accepting help. That, and my stubborn, fiercely independent streak. It’s just that it’s gone on for so long, and I hate hate hate that it has been central to so many decisions affecting not only me, but people around me. I resent it. It’s one thing to try to take over my life, but how dare you get in the way of my brother living his life exactly how he deserves? Not that he sees it that way. He has a great life. He just celebrated his first anniversary with his lovely wife, has a great group of friends, has a job he doesn’t hate with coworkers he enjoys, and plays more sports than anyone else I know (he is most at home on an athletic field, so this is a very good thing).
And we had a great childhood! The house was always full of love, delicious food (arguably the same thing as love in an Italian household), loud laughter, and support. OK, the noise was mostly my friends and me and definitely got on his nerves, but that’s what little sisters are for, right? In so many ways, life seemed amazingly “normal” (whatever that is). But the impact of my lifelong struggle with cancer on my brother is my biggest regret. And it’s something I can’t change because the damned thing won’t leave me alone! He has always assured me that he does not hold it against me, and yet I cannot stop myself from trying to shield him from harm, to make his life just a little easier in my way. To bring small bits of unexpected happiness to his life, to make sure he always, always knows he is valued and loved. I don’t know how successful I’ve been, but I’ve always tried.
My version of “normal” included at least annual recurrences of osteosarcoma, each time in my lungs except once. Thoracotomies to cherry pick out pieces of osteo were just something I did, sort of like going to the dentist every six months. It became part of the routine, to the point where people sighed and shook their heads when they heard, but they eventually stopped being surprised, expecting to see me back at school within a week. And on the bright side, since I had all of my treatment at Walter in D.C., that provided the rare opportunity to hang out with my very first friend, who lived in Northern Virginia. Our brothers were born a day apart and were in the same play group, so we became fast friends from our respective wombs two years later. She visited me at Walter, and we got into all sorts of trouble – stealing a giant, stuffed snowman and repositioning him at my door as a makeshift butler… getting kicked out of a courtyard by the Secret Service so the President of Bolivia could hold a press conference… you know, the usual. Things I doubt we could have gotten away with in a civilian hospital.
Everything changed in 2001. One of the three amigas experienced her own recurrence. Brittany’s rhabdomyosarcoma came roaring back seven years after she had finished treatment in the midst of her first semester of college, catching everyone off guard. I kept telling her she really shouldn’t try so hard to be like me, it wasn’t as much fun as it might appear. She usually gave me a weak smile and asked what else was going on in the world outside Walter. My best friend and I even busted her out one night for dinner… Bennigan’s on Rockville Pike, if memory serves. That’s the night she left her “Do me a favor… SMILE!” note.
That was the last time I saw her outside the hospital. After that, I stopped by to see her each time I went to the clinic for labs. We laughed that we had the same conversation every time because she never remembered it.. it seemed like she had just received Ativan (a powerful sleeping medicine) whenever I turned up. So on at least three occasions I told her about my internship and that I was excited to be going to Rome the next semester. And each time she was super excited for me as she drifted off to sleep.
One day, though, I did not stop by after my blood draw because I had a work meeting a half hour away and was already cutting it close on time. I figured I’d see her a week or so later when I went in again, no problem. Except there was a problem. It happened on my roommate’s 21st birthday. We were having a boisterous dinner at the apartment after going to the gym, when the phone rang. I answered, “Pronto, chi parla” – in preparation for Rome and all. But it was from Walter. It was a nurse I’d known since my bout with rhabdo, and she was quite solemn.
“Mer, sorry to interrupt the celebrations, but this is serious. Brittany isn’t doing well. She fell into a coma and is on life support, and it’s about to be pulled. You need to come and say goodbye. We’re in the ICU.”
How could this have happened? No, this was not how things were supposed to play out. If it was going to happen to anyone, it was supposed to be me. No one would have been surprised. Not that people would have been happy about it, but it would have made way more sense. Much more logical. After all, I was the one who continually relapsed. How else was I to continue training cohort after cohort of military pediatric oncologists?
And so, on my roommate’s 21st birthday, she drove me to Walter’s, and we made our way to the 4th floor. To the ICU. To the first room on the left as you entered, where my friend lay dying. One of the ICU nurses had put Enya on a stereo that mysteriously appeared and turned off the audio on the monitors to spare us the beeping when her heart stopped. I went in alone and fumbled through my goodbyes before stumbling out into the fierce embrace of her dad. Her beautiful mom. Parents should never have to bury a child, and certainly not two. You see, a year before Brittany was born, her parents had a son who passed after one day. But then Brittany came along, a tiny ball of energy and laughter and good will, with periodic bouts of self-doubt that follow all teenagers like a shadow, which she tried so hard to hide. I remember saying to her once, somewhat exasperated, as another year of high school was about to start, “Who cares what they think, Brittany? If they can’t see how amazingly awesome you are, so much the worse for them. We know how great and kind and generous you are, and you should see it too.” How I wish I had been more patient and reassuring along the way.
Our other Walter-grown amiga flew in, and we both went to the funeral. It was a lovely service, and there was a point when the choir hit the most angelic chord as her casket was being carried out by the pallbearers – the crew team from her college, for which she was the coxswain – that I knew she wasn’t in pain anymore. That sense provided me brief respite, as I wandered through the weeks that followed in a painful haze. I went to the office, plodding through the days with an uncharacteristic lack of focus, counting down the hours until the day ended and I could resume driving aimlessly through Rock Creek Park in search of an elusive sense of peace. That, my friends, is why I so desperately needed to go to Rome. I needed to completely remove myself from that environment and immerse myself in something entirely different to regain and reshape my perspective. Everywhere around me in D.C., I felt nothing but sadness and confusion, anger and profound grief, and above all, deep guilt. Why was it her and not me?
Please understand, dear friends, this is not a wish that it had happened to me. I recognize that if it had been me and not her, it would have in no way lessened the overall pain in the world. It just would have shifted its intensity onto other people. Other people who had already shouldered more than their fair share, and continue to do so today – just as her parents had already borne more than theirs.
That was 15 years ago. Her parents remain an important part of my life. They came to my college graduation, and we see each other several times a year to catch up and reminisce. Her mom even came down to be with my parents during my mastectomy, which was among the most touching gestures I can imagine. Grief manifests differently in each person, and I’ve long worried that my presence is a source of pain for them. So I try to keep her memory alive each day in different ways, to live not just in a way that makes my family proud, but also hers. To be a far greater source of joy than of pain.
So each summer around July 12, I drive to St. John’s Cemetery for a visit. I lie down on the grass next to her grave and catch her up on everything that’s happened in the world and in my life. I ask her advice, and I ask her to forgive my shortcomings as a friend. I ask her to help me let go. Let go of the grief and the guilt, that I might be a better friend, sister, daughter, Auntie Mer Mer, colleague to those currently in my life and those who may enter in the future. That I might be less judgmental and more compassionate to those enduring their own personal struggles. That I might withstand my own battles with grace and kindness. Maybe, just maybe if I am successful at that, it would give my poor lungs the break they so rightly deserve.
When I’m done at the cemetery, I meet my big brother for a tasty meal, to continue my journey of making things up to him.
Thank you, dear friends, for supporting me in this lifelong endeavor. I’m sure I couldn’t do it alone.