One year ago this November, my teenage daughter was misdiagnosed with medulloblastoma – a devastating, potentially terminal type of brain cancer. The hours before the true, much less serious diagnosis was discovered were some of the most excruciating I’ve ever had to live through.
She had been feeling dizzy, and then started to develop vision problems. When she stumbled down the stairs in our home, I knew something was very wrong. I took her to the pediatrician, who ordered a CT scan. As we came back home and walked through the door afterward, the phone was ringing.
It was the doctor saying my daughter had a highly malignant brain tumor.
My world was turned inside out as the doctor calmly yet firmly gave me instructions: tell your daughter the news right now, call your husband at work and tell him to come home as quickly as possible, and then go immediately to the pediatric emergency room at Johns Hopkins Hospital. Tonight. I hung up the phone and sank to my knees.
At that moment, something inside me gave way and separated from me, lost forever. I knew that the life I knew before was gone and that my life from that point on would be spent fighting for my daughter’s life and, perhaps, coming to terms with her death. The feeling was visceral; a mother’s ultimate pain.
Since that autumn evening, I’ve thought a lot about the power of communication and how a few words can alter our perceptions – of others, ourselves and even life itself. Words, language and thoughts can change the world. They can lift up and they can destroy.
Nothing takes away the life-altering feeling of being told your child will probably die soon. Although my reality is mercifully much different than the nightmare I thought it would be (my daughter has a venous cavernous malformation or cavernoma that bled and caused her symptoms), I am changed, and the way I hear, process and convey information is different. I’m more careful in my word choices, and more skeptical of information I receive.
What have you experienced that prompted you to ponder the awesome — and sometimes awful — power of words?
Found your article compeling. I understood what you said in two instances. First, The power of words to devastate you; when told that I had a mass in my brain, which would be later be diagnosed as an astrocytoma grade one. I truly thought I would get a recurrance and die, sooner rather than later. I wanted to give up the dream of having children and was heartbroken to leave my wonderful husband after just 4 years of marriage. Then again, it was words that changed my life. I talked to a dear friend, who is a doctor, and spoke about the uncertainty of my future. He, calmly, with compassion and care, yet firmly, told me: You have a choice, you can continue to live your life, try to have children and fight, or just let go now and not fight. Not without fear, but I heed his advice and here I am 25 years later, two wonderful beautiful children and a great husband. So words can heal or devastate. I hear you dear friend
Lucienne: I’ll never forget the day you came into my office to tell me. I thought of you often as I faced my own hell, and recalling your strength and determination really helped get me through it.