I have always tried to live “above my diagnosis,” to not let my cystic fibrosis define me. How does one live above a diagnosis? I am uncertain, but I think it has to do with courage, imagination, grace, help, timing, attitude, a sense of humor and irony, and love.
1969. I was 14 and my life with CF began for real that year. I had always been considered small for my age and, although I played the clarinet, I was plagued with chest colds, pain in my shoulders and rib cage, rattling breath sounds and thick sputum. That Christmas my doctor decided that I did not have severe allergies or pneumonia “lite” -- as had been thought for so many years -- and so I was hospitalized for tests.
I spent what I thought was a somewhat enchanted yet strange holiday by pretending that the oxygen tent mist I was living in was a kind of winter wonderland. The clear plastic tent walls were speckled with droplets that created a screen from my hospital bed through which I admired a small tinsel Christmas tree that appeared to be covered in illuminated sugar. This and other holiday diversions occupied my mind during rounds of tests including those for leukemia and other cancers. Eventually, one last test was performed and after several days my parents were advised of the results.
Few people had heard of CF in 1969, and the diagnosis surely must have felt like a slammed door for my mom and dad. At the time, there were no campaigns to “kiss your baby” for saltiness, no awareness to test parents who might be carriers of the rare gene. My diagnosis came during the period in which research had not made the huge breakthroughs that would eventually lead to important drug therapies. There were very few medications. Hope seemed to be the standard for families with children afflicted with the disease. To fear this thing that doctors could not exactly identify and certainly could not heal registered heavily with my parents. Family lore had it that my mother's only sister laid on her bed and coughed to death in 1931. She was 20. My doctors explained to my parents that if I were lucky I should survive to the age of 19.
I not only lived to be 19, in 1974 I committed myself to envisioning a big future. I went to college in Rome in '75, which changed my life forever.
Even with CF, even with CF, I would repeat to myself, everything seemed possible!
The world was large and beautiful and varied and I loved it. The freedom that I felt was instinctual and inspiring. I could do this! I would not fear!
I traveled each Thursday afternoon once Italian classes had concluded for the week. I would roll up and pack the three chest x-rays I was instructed to have with me at all times, a clunky DeVilbiss 35B nebulizer, saline packets and glass vials of Mucomyst (a medication that smelled like rotten eggs, the standard and only drug that I used) in my backpack and haul it with me out of Rome. My CF kit, as I called it, was never out of my sight while on adventures through Italy and beyond.
I obeyed my nebulizer routine to a T. To the degree that my health and, therefore, my respiratory safety, depended upon regular treatments, I boiled tap water on a hot plate or in an electric teapot to sterilize the nebulizer's components. Traveling from country to country, where electricity currents changed and the configurations of outlet plugs differed wildly, I brought a wardrobe of AC/DC adaptors as if they were language translators. I packed my own clean towels so that there was no cross-contamination with my equipment. Like all CF patients today who are experts at their care and can operate the vest, and give themselves intravenous (IV) antibiotics through portacaths and PICC lines, 41 years ago the one tool -- my “machine,” as I called it -- was all that I could rely on.
But I was excited. Yes, I was sick a good bit of the time. But I felt that if I lived to the best of my instincts and followed the health regimens laid out for me, that if I dreamed large and imagined what I could do and be in this world and not be wholly defined as a “sick girl” then somehow I would not be.
Certainly, hospitalizations continued in the decades that followed. I had countless procedures, infinite IVs and new threats while hospitalized, such as pseudomonas and MRSA. But then, astonishingly -- which I admit to with true humility -- when I considered that I lived to be 19, then 29, 39 and now 60 years old, I came to understand something beautiful: that, although I could never had done it alone, my life had always been lived above the diagnosis.