My little sister, Jennifer, was a beautiful woman who, like myself, fought Cystic Fibrosis throughout her life and on Saturday, February 7, she passed away at twenty-three after her body rejected the set of lungs she had received by transplantation the previous October in Denver, Colorado.
Cystic Fibrosis, like other genetic diseases, inhabits a unique place in nature for the evil it creates. In the novel The Brothers Karamazov, Dostoevsky speaks to man’s singular capacity for “creative” evil; however, in his writing, Dostoevsky neglects the insidious evil of nature, which enabled Cystic Fibrosis to slowly deteriorate my sister’s lungs through years of struggling for her health.
During my life, I have tasted the suffering brought by Cystic Fibrosis, but this weekend I experienced its devastation. The day before Jennifer’s death I rushed to the airport after I received a call that she would likely not make it more than a day. My tears began to course as I entered her room and saw her strain every muscle in her chest with each breath she took, almost shaking the bed with her effort. Her fight to breathe in those final hours unmasked, for all of us to see, the fight that had been hidden in her lungs every day of her life.
That night, before her death, I spent my final moments alone with her, and as I sat on her bed and held her hand I wanted her to know that her death was not her fault. I didn’t want her to die thinking that she didn’t do enough and that maybe she could have prevented that fatal outcome. The reality is that she was sick because of a genetic mutation that was arbitrarily given to her and she died because the lungs she was given were not compatible with her body.
When you live with CF, it is easy to develop a “guilt complex” that your sickness is your own doing because you didn’t do enough to stop it. A person diagnosed with CF is assigned to a life of unending treatments, nebulizers, and medications that take hours every day, and compliance to these treatments is essential to health. However, sickness and long stays in the hospital are almost inevitable, and it can lead to the thought that “if I would have done more treatments, or exercised more often then I wouldn’t be sick,” but the fact is that Jennifer and each person with CF is sick because they have a disease that was randomly given to them and was out of their control.
It is this arbitrary nature in which Jennifer was given Cystic Fibrosis and died that I have the most difficult time reconciling. She should be alive. She should still be with my family, laughing in our dining room, and playing piano as I come home. The simplicity of her life was beautiful and pure, but it was too short and now I am without my partner in our fight of over twenty-three years.
However, before she left, Jennifer gave me an indelible lesson by her immeasurable grace and composure as she awaited her death. As she laid in her hospital bed those last few days my family and I were the only ones crying. For the first time in months Jennifer let go of her stress and fear and lay confidently waiting, and even as she struggled for each breath she maintained a transcendent peace welcoming her death. As I carry on without her I retain her calm to emulate as I face my own fate living with Cystic Fibrosis and the uncertainty that my future holds.
In my first article, I wrote about my experience finding the Latin words, “dum spiro spero,” which translate to, while I breathe I hope. I believe that hope is not possible without suffering and it is in my suffering that I hope life can be different than it is today. However, as novel CF therapies are being developed that may provide this possibility, I struggle to understand why this could not be the same for Jennifer and the countless others who have died before her from this disease.
It is in their memory and honor that we must carry on the fight against CF. The new therapies that are being developed are the beginning, but the healing they provide is incomplete, and nearly 50% of CF patients are left without the possibility to take these drugs. We must push forward until the healing for everyone with CF is complete; and so I will carry on this fight with tears in my eyes and pain in my heart from the loss of my beloved sister, yet always holding onto the words, while I breathe I hope.
August 13, 1991 to February 7, 2015