For the voiceless, a Mouthpiece
Fall 2012 – Patient Voices
One summer day in 2004, Brian Boyle was driving home from swim practice when a dump truck slammed into his car, thrusting the 18-year-old athlete into a two-month battle for his life at Prince George’s Hospital Center in Cheverly, Md. During that time, Boyle, who lost 60 percent of his blood and was revived eight times on the operating table, could see, hear and feel pain, but was unable to talk or move.
Today, Boyle, who spoke at the third annual Johns Hopkins Medicine Patient Safety Summit in June, has made a full recovery and is nationally known as a patient advocate and spokesperson for the American Red Cross. Boyle credits caregivers for his many accomplishments, including the more than two dozen marathons and endurance events he’s participated in since his recovery. To help Hopkins health care providers understand the needs of patients who can’t speak for themselves, Boyle describes his experience during the eight weeks he spent in a chemically induced coma in the ICU and how his care team inspired him to keep fighting.
Ceiling tiles. That’s the first thing I saw when I woke up alone in a white, brightly lit room. I didn’t know my name, where I was or how I had gotten there. I couldn’t move my arms or legs. I couldn’t even blink “Is this a dream?” I asked myself.
A priest recited the Last Rites by my bedside. The room became hazy before the blackness swallowed me whole. Hours, or maybe days later, I woke up again. My eyes burned as though they’d been open for days. I wanted to close them so badly, but I couldn’t. My left arm felt like it was on fire, and the pain was excruciating. I felt like screaming. But no one came to my rescue because I couldn’t speak, so I suffered in isolation and maddening silence.
Slowly, I remembered my name, the first of many clues I silently strung together in the days and weeks that followed as I tried to piece together the broken puzzle my life had become.
While I couldn’t talk or move, my other senses seemed superhuman. I heard everything, from the steady stream of beeps coming from the army of machines around my bedside to hushed conversations in the hallway. Words like “nursing home” and “vegetative state” amplified in my mind, crowding out any hope of ever escaping from my mental prison.
Among my heightened senses: an innate ability to detect mood. Whenever a nurse or doctor entered my room, I always could tell if they were happy or hurried, frustrated or calm. I always hoped my clinicians’ spirits were high; I needed every ounce of their attention to survive.
My time in ICU Room 19 passed slowly, marked by the smallest signs of progress: first blinking, wiggling my toes and then speaking my first word (months later, I added taking my first step to the list). None of these huge personal milestones would have been possible without my family and the many nurses, doctors, therapists, techs and countless others who fought tirelessly for me. Completely reliant on others in my vulnerable state, my health care team met my many needs, big and small, around the clock.
Most of all, however, they gave me hope. Even though I couldn’t talk, they spoke to me — something I craved in my isolated state. Whether to explain that day’s tests, to talk about the Olympics in Athens, which they frequently let me watch, or to tell me about their lives, they treated me like a family member instead of a body in a bed. Actions as simple as playing my favorite CDs or asking my family to bring in fans to cool my feverish body meant so much to me. The impact of even a smile cannot be overstated.