Occasionally my family indulges my penchant for theme Halloween costumes. The year after The Incredibles was released, everyone was game to be “Supers” for a night. Of course the irony of casting me as Elastagirl was lost on my small children. I suffer from a collagen vascular disorder called scleroderma, which literally means “hard skin.” Physically, I am about as far from flexible as a human can get. But even as my illness rendered my body rigid, it forced me to become more mentally and emotionally malleable than I ever dreamed possible.
I have always been a plucky underdog. All my life I have defied the odds, ending up with a far different outcome than anyone would have reasonably predicted. Appearance-wise I was always the ultimate nerdy girl: short and spectacled with very crooked teeth. Yet, despite my geekiness, I was popular. To this day, I could never fathom why I somehow escaped the ridicule that should have been showered upon me throughout childhood. The local library, my favorite place on the planet throughout my childhood, contained a series of picture books of the countries of Europe. I used to pore over those books, honestly believing that the children in 1979 Holland were still wearing wooden shoes and pointed caps, and dream of leaving the working class streets of Northeast Philadelphia. But I never once believed that it would actually happen. And nearly 30 years later, I have not only left Northeast Philadelphia but also lived in Paris and Perugia. In Uganda when I was mugged at machine-gun point on a dark street, all I lost was some Ugandan shillings. I walked away physically unscathed albeit emotionally shaken. And when a fire engulfed my house and all my belongings in graduate school, it set into motion a series of events that led to my relationship with my dearest friend, Grace, and to meeting my husband. There are times when I look around at my life bemused and surprised and ask myself, “How did this happen?” With me, it seems, nothing ever turns out in a predictable way, and I have learned to trust this as a birthright. Deep down I always believe I will land on my feet no matter what life throws my way. I don’t think it is a skill, I just think I am lucky even when I’m unlucky.
So when I was diagnosed with a life threatening autoimmune disease at the tender age of 27, I eventually shook off the initial depression and set about living again. I decided that disease or no disease, I had a life to live and I was going to achieve as much normalcy as possible. I ignored the dire predictions and dreadful statistics that suggested that I had a 50-50 shot at living for 10 years. After all, things always seem to work out for me, why would this be any different? I bore two children, I established an academic career researching children’s health issues and teaching at the university level, I taught myself to sew and knit, I learned to speak French and Italian very badly, and I cooked a lot. For a decade I stood at odds with my illness tenaciously forbidding it to affect my life even as it scarred my lungs and esophagus and left me riddled with wounds that never seemed to heal. I wrote manuscripts while chemo dripped from the intravenous tubing into my veins. I typed grant applications one-handed after surgeries to strip the sympathetic nerves off my overresponsive arteries. Friends and family members congratulated me on my strength and fortitude. On the surface I had beat my disease into submission.
For ten years, I looked just like all my friends juggling their thirty-something lives. Except that I was doing it with a vengeance. Every cupcake and Halloween costume was made by hand, every birthday party was homegrown, I sewed their curtains and knitted their scarves, I took a million photos of them from every possible angle and filled journals with details and stories of our lives for future reference. I was trying to squeeze a lifetime of mothering into every year because deep down I knew -- I know -- my time is running out. If my children couldn’t have me for a lifetime, I wanted them to have the very best of me that I could give. And I did it with ease.
Well, at least, that is how it looked on the outside. On the inside I was crumbling. I spent hours of my life crying in the car to Celine Dion, LeeAnn Womack, Five for Fighting, Tim McGraw or whoever was crooning the latest in a seemingly never ending string of songs bemoaning our mortality. The car was my favorite place to decompensate because eventually I would reach my destination and the grieving would have to end. On rare occasion I would relent and assume the fetal position, allowing only my husband to witness the depth of my sadness and fear. But I would not, could not, let others see my vulnerability. I needed to appear strong, invincible, and unphased by my illness. I mistakenly believed that if everything appeared to be normal that, in fact, it was. And I couldn’t ever really let my disease know it had me. I became a very good actress, happy and accomplished on the outside, petrified and exhausted behind closed doors.
On a trip to Italy my disease, which had been worsening without my acknowledgement for months, finally limited my daily activities in a way that even I, in all my stubbornness, could no longer ignore. I could no longer walk and pull luggage simultaneously, my lungs balked at every Umbrian hill, and the relentless heat made me gasp for air. I kept thinking back to the Scala Sancta in Rome where pilgrims ascend the stairs on their knees. I didn’t join them, but I felt as if I were among them in a proverbial way. In Assisi I stood side by side with my little white-haired father after climbing the stairs from the lower to the upper church. He was unphased by the physical demands of our day trip while my heart raced and my breaths quickened to a frightening pace. I stared at the hill leading to the historic city center, trying to imagine how I could climb it so that my father could see the rest of the city. “I’m sorry Dad,” I mumbled between breaths, “I just can’t do it.” “No problem,” he said, “Let’s go eat some ice cream.” We sat together and ate out gelato in silence, neither of us willing or able to give voice to our fears. In that Umbrian hill town famous for its beloved native son I could no longer ignore the reality that my lungs were failing and I knew that my life had to change.
I scheduled cardiac catheterisations and pulmonary function tests, I took my steroids, I coughed relentlessly, and I cried. First I emailed a couple friends and admitted that I was struggling not only to breathe but also to continue the charade. These first few friends gently broke me into this new territory of neediness. To my surprise, it felt good to let my guard down. In fact, once it was lowered, I was unable to hold back any longer. Through email logs back to the states I told my friends and family about my physical struggles in between amusing anecdotes about our Italian adventures. Before our trip was over I had admitted that I was retiring not only from my job but from “doing it all.”
For a decade I had put up a good front. I led everyone to believe that I was a rock and I didn’t know how to admit the truth. I wondered what everyone would think if I fell apart publicly. What would they say if they knew I was … weak? Finally I realized that I had been waging the wrong war all along. I had miscast this “fight for my life” as the maintenance of a normal existence without any regard for the fact that I was living under completely abnormal circumstances. To me the “fight for my life” became twisted into pretending that my illness did not exist when it should have meant having the highest quality of life for the longest possible time. And my battle plan, to exhaust an already overtaxed body until it had nothing left to give, was foolhardy and dangerous. We are a country of people that loves our pushy slogans, “Be All You Can Be” and “Just Do It.” And like everybody else I bought the marketing completely. I knew for years that I had been fighting the wrong war with the wrong strategy but I didn’t have the courage to admit my error. So I kept waging battle long after I should have laid down my arms to rest and recover.
My need to appear strong had been my hubris. I underestimated all the people in my life. When I let down my guard and admitted my sham, I had all the love and support that I could ever need or want. Meals arrived, friends called and emailed, and shoulders caught my tears. I am learning to accept that I am not and never was incredible. I am merely one woman, among many, doing everything in her power to love her children and live her life under unusual and difficult circumstances. I know I am not alone. All my sisters out there struggling with breast cancer, lupus, depression, and a myriad other diseases you are not alone. So let that stiff upper lip quiver and you may just find that you are loved beyond measure even if, and maybe because, you aren’t incredible.