Published on September 21, 2017
In March 2016, a catastrophic moment in my life changed everything for me and my entire family: my 32-year-old son, Jordan, was diagnosed with Hodgkin lymphoma along with concurrent life-threatening brain swelling of unknown origin. Upon being told the diagnoses, my breathing stopped, and my heart skipped a beat as I experienced every mother's nightmare—finding out that your child has a life-threatening illness. Finding out that your child might not “make it.” As the doctor spoke, his mouth moved, but I was frozen in terror, unable to hear anything he was saying, unable to move or articulate any appropriate verbal expression. As he outlined what would surely become a whirlwind year of surgery, chemo and radiation therapy, along with “hit-and-miss” treatments to save his life neurologically, my mind swirled with the horrors of such horrific diagnoses. How could this be? I'm a nurse! I'm a professional patient advocate! I'm a mommy! How could I protect my son from the dismal and unpredictable reality he was now facing? How could I protect him from the pain… and the suffering… and the possible loss of life?
As we listened to the doctor give us the bad news that would change our lives forever, I gently wiped away my son's tears with my bare hands, blinded by my own tears that streamed uncontrollably down my cheeks like an open faucet. The pain and the terror were too much to bear. My son and I embraced as we shamelessly wept together. I remember whispering in his ear that everything would be all right, but how could I knowingly tell him that? There were no guarantees offered of a perfect outcome. Despite assurances of a high cure rate for the cancer that he had, what if he fell into the lower incidence of a dismal outcome? And his brain issues? The doctors didn’t know what caused them, so how could they possibly be treated with a positive outcome? In the face of two potentially life-threatening illnesses, how could I not be totally honest with him? That one moment solidified my commitment to him and to myself, that everyone involved in his care would be expected to be totally transparent and honest with him. He should...and could…expect no less than that. That openness and truthfulness would serve to empower him, as he could now develop relationships with his medical team based on mutual respect and trust. He could ask the questions that needed to be asked, feeling comfortable knowing that he would have access to all the information he needed for thoughtful analysis and decision-making about his situation and ultimate care. In all of his misery, he remained calm, accepting, thoughtful, analytical, mellow and mindful. He quickly became a great advocate for himself. He never once said, " Woe is me" or " Why me?" Despite all that he was facing, Jordan became a role model of strength and empowerment for each one of us to emulate. And it made it easy for all concerned to embrace him.
I coined a phrase which I called VICTIM vs. VICTOR during Jordan’s illness. In challenging times like these, the patient either assumes the role of a victim or a victor. The patient can either feel sorry for themself, be pessimistic about the future and/or feel hopeless in the face of such dire circumstances. In the nine months I spent with my son, together for every waking moment, I can honestly say that he was a victor from the very beginning of the journey. He never expressed any negativity regarding his predicament. He communicated openly with his healthcare team. He listened to whatever they had to say. He asked all of the right questions. He made thoughtful decisions based on the information he was given. His victor positivity shone brightly, lighting the way for everyone who was caring for him or supporting him in one way or the other. His sense of humor, his dignity, his intellect and his humanity was cause for everyone to love and embrace him. Jordan’s lead doctor, Neurologist Dr. Souhel Najjar, from Lenox Hill Hospital in NYC, often told him that he loved him like a son. Regardless of the outcome, medicine just doesn’t get any better than that.
Lorrie Klemons, RN, MSN
Co-founder, Patient Action
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