As you all know, I was going to write a piece for the second edition of Taking Flight: Inspirational Stories of Lung Transplantation, but I just couldn’t get myself to write something I liked enough to submit. When I first told Carol about it I encouraged her to submit something from her perspective, but she never got around to formalizing it with the appropriate legal forms required, etc. She did, however, finish writing one and told me I could post it on here.
My sister has always been the stable, calm, voice-of-reason “big sister” in my life. When I would burst into tears or stress myself into a frenzy over a mildly significant problem, Susan would be the one to tell me to “suck it up” and offer practical solution A or practical solution B. The older I got, the more I began to depend on this calming force in my life.
Little did I know that the seemingly dire problems I faced in life would be put swiftly into perspective in the fall of 2008. Susan, who had never been seriously ill in her life, was suddenly diagnosed with idiopathic pulmonary hypertension. By the time she was diagnosed, her heart was in complete failure and her lungs were shot. We went from a outpatient procedure to immediate admittance to cardiac ICU, cardiac arrest, surgery to be put on the life support form known as ECMO, then a heart and double lung transplant—all in 2 weeks’ time. She had been feeling short of breath, gaining weight, and retaining water gradually for years. Like most people would, she assumed it was simply due to her being out of shape, not having enough time to exercise, etc. Nope, she was that ONE person in a million who contracted a mysterious disease that crippled her most vital organs.
During those first few days in the hospital, as we waited for her to come out of surgery after surgery, fear, panic, grief, and guilt tangled themselves into a complex emotional maze that enclosed me. I’m a particularly gifted person at guilt—again, one of the reasons why Susan would tell me that I’m being ridiculous, unreasonable, and should just “let it go.” Not so easy, though. Especially when you’ve seen your sister gradually decline in health, but not realize that it was due to a serious, rare, life threatening disease for which there is no cure. Not when you were on vacation with her 10 months before she coded in the ICU and didn’t notice she had trouble breathing on day trips. Not when you were walking with her four months before and she had to stop every few minutes to catch her breath, and you thought to yourself, “wow, how did she get this out of shape?” Nope, these situations make the guilt-prone people like me cling to the “facts” without abandon. Of course, my immediate feelings in those first few weeks and months were mainly fear and grief. Fear that she would die, grief that I might not have my beloved sister forever. But my forte, grief, would hang around for me to go back to whenever other emotions started to take a back seat.
So as I work through how our lives have changed and occasionally beat myself up for being such a pessimist, I find myself grateful most for one thing. Obviously, for the fact that despite a long recovery, followed by irreversible rejection of the lungs only 8 months after her first transplant, and a second transplant, which seemed at times impossible, my sister is still alive. But unlike the gracious, well-adjusted folks I’ve met at the hospital whose family members also lived through this kind of medical reality, people who can smile and thank God for all the blessings in their lives, I don’t find myself an optimistic, glass-half-full kind of being. I’m more the “why her? why is life so hard? this sucks” kind of person. Perhaps I’m just not as emotionally mature as others, or the darn melancholy gene happens to be strong in my blood. In any case, I am, despite my nature, unbelievably grateful for one thing in particular. It’s Susan’s ability to remain herself, despite all this trauma. Her ability to still say, in response to my questions of “why did this have to happen to you?”—“who knows? I mean, what are you gonna do?” And the answer, for her, of course, is to just keep living. To be happy with a new life on oxygen, to not dwell on the past but to enjoy the little moments of the day—voting for America’s Got Talent, farming on Facebook, laughing at various blogs online, hosting her monthly knitting club. I’m grateful that, even now, as I fight (or simply sit in) the maze of fear, grief, and guilt, Susan looks me in the eye, tells me to deal with it, and wants my opinion on her latest yarn purchase.
So I can’t say that her transplant itself is inspirational. Yes, it’s a medical miracle that she is still alive. That she has had 5 lungs in her life. That she has survived complicated surgery after another. Of course, that in itself is amazing. But the truly inspirational thing to me is her constancy. Even in that moment, when she was revived from cardiac arrest, and being wheeled down to surgery to have her heart connected to a machine that would pump blood out, oxygenate it, and then pump it back in, she wasn’t the one who was weak. Our parents and I saw her for a few seconds while they were transporting. She lifted off her oxygen mask, looked me dead in the eye, and with a labored breath, told me “don’t worry.”
A few weeks ago, at a recent doctor’s visit, she was told that she might never be completely independent of oxygen. Her response, as she explained it to me was, “forget it, I’m done with worrying about what’s gonna happen later. If I don’t get off oxygen, I don’t. Whatever.” So for my frequent emotional spirals, it turns out that practical solution A that’s always been offered to me (really, every since we were children) is still available. Deal with it, move on, and enjoy the little moments in the everyday. For that, I have my sister, her amazing medical team, her donor’s families, and the universe to thank.