My sister-in-law sent me a touching video of patients and staff at Children’s Hospital at Dartmouth-Hitchcock lip-synching and dancing to Katy Perry’s song “Roar” (have some tissues ready). My first thought was of compassion for these young patients and their loved ones—how scared they must be, how confused, worried, angry, sad, tired.
My second thought was shame. Because I am the bad news. A life of late effects almost certainly awaits these precious children, if they survive treacherous cancers and their hideous treatments. I cried for these kids and their families, and then a bit for myself, too.
In almost three decades following my initial treatment, I’ve had 2 more life-threatening staph infections and 11 more surgeries, including an amputation. I live with chronic pain and medications that add insult to injury by leaving me tired, constipated, and frustrated with aphasia.
Of course there are also many wonderful things about my life. I am blessed with a fantastic partner, a lovely home in an amazing metropolitan area, great friends and family members who care about me. I have a rewarding career. I read voraciously and with great pleasure. Two adorable cats call me mom. The Red Sox beat the curse of the Bambino.
A lot of my scars are inside, where they don’t show. I try to keep up a brave face, and I mostly do. But when the memories of pain and fear and loss fuse together with the current reality of pain and exhaustion in the 2am darkness, I cry. When the itching of the skin inside my prosthetic socket makes me insane—but I don’t dare release the suction and remove the prosthesis long enough to scratch it because then my limb will swell and I won’t be able to get my prosthesis back on and I have to teach a class in 15 minutes—I muffle my scream with a throw pillow. When people stop walking to stare at my prosthesis with morbid curiosity and elbow their companions and jerk their heads at me to make sure that they get a good look, too, I maintain a tremulous smile.
I keep in mind that many people suffer a great deal more than I do, and that I have the privilege of health insurance, which millions of people in the U.S. lack (and many millions more will lose, if Congress succeeds in repealing the Affordable Care Act). I focus on gratitude and on not giving a damn what others think.
But then I picture those little bald kids in the video lying on stark white sheets, smelling the pervasive hospital scent of antiseptic and fear, their veins flooded with toxic chemicals, their gorgeous smiles and joyous dance moves. And the shame floods over me again—shame that I never got the happy ending, that my positive attitude didn’t make everything all better, that I manage a terribly imperfect body as best I can, that I’m not cute like the sick kids in the video.
I want so badly to believe that it won’t be too bad—that these kids are resilient, and the doctors are using state-of-the-art treatment protocols that have to be better than what they gave me almost 30 years ago (right?). I want to believe that the kids will be fine after their treatment, even though medical and social research confirm that fine is highly unlikely.
I can’t believe that, so instead I will tell the truth—that my heart goes out to them, that I have no idea what will happen to their children, that the cancer (and other illnesses) are not in any way their fault, that they have every right to cry and rage, that all they can do is their best, and that it may or may not be enough to save the kids.
A long road stretches ahead for these parents and kids and the hospital staff that cares for them. With no end in sight, they are better off focusing on one step at a time. I’m limping along, well ahead on the journey, hoping hard that some of these little kids catch up with me one day.