Some patients we never forget.
She was a middle-aged white woman with brown hair and arms only a frequent gym-goer could possess. She walked through the clinic doors accompanied by her newfound love—newlyweds. My attending physician introduced himself and then it was my turn as the third-year medical student on the rotation.
She smiled in response, followed by a courteous, “Nice to meet you.”
I had perched myself at the corner of the room against the sink at the base of what appeared to be an isosceles triangle. I was one of the bases, the neurology attending the other, and the patient and her husband represented the tip.
Here, I observed from my perch.
In her next few sentences she described how one morning, upon awakening, she noticed she was slurring her words of which she attributed to the notion of having suffered a mild stroke. In her mind, how could it be anything else? She was in her early 50s and unlike many of her friends she maintained a strict diet, a daily gym routine and a mentality to match.
After multiple questions, some mild laughing with intermittent smiling even, the neurologist paused. He clasped his hands together as he let out a slow breath of air.
“I firmly believe you have Amyotrophic Lateral Sclerosis (ALS), and the slurred speech is the beginning of this process. This is not a stroke, I’m sorry.”
I do not know which came first—the hopeless shriek or the cascade of tears. She knew she had just been given a death sentence and despite her husband’s best efforts there was no consoling her. A tear fell from my left eye as I quickly tilted my head back looking up towards the ceiling hoping gravity would play an effect and somehow the tears would roll back into my head rather than onto my white coat. From the actions and demeanor of my attending physician it was evident he had given this news before—one too many times. Two thoughts filled my mind as sadness filled the room.
First, I thought about the disease process itself, which I had read about the night prior characterized by “a progressive loss of motor neurons in the brain and spinal cord.” ALS is a progressive, disabling, and ultimately fatal disease of unknown cause starting with a gradual muscle weakness and wasting in the upper and lower extremities, muscle fasciculations and inevitably difficulty swallowing, phonating and breathing.1 This degenerative process continues until respiratory failure will most likely claim her life as it has so many before her.1
As my attending and I stood there watching her cry, the clock stood still.
Why her? As time stood still, I kept asking myself. Why not her husband? Why not my attending? How would she spend her remaining months before the disease would cripple her into a wheelchair and the permanent requirement of mechanical ventilation would ensue?
As physicians, too often, we are sculpted to believe we are invincible. We care for others at their most vulnerable time and it is always them—that is the vernacular. The patient’s tears made it clear she was not ready for such a diagnosis; she was not ready to die. I do not know if in the moment she was frightened by the certainty of death or death was far superior to the alternative life that awaited her.
I, too, am scared of death. I am scared of being forgotten. After an obituary in a newspaper, a funeral, stories shared, beautiful words produced and dark clothing worn with covered eyes, life continues for everyone except the deceased. I wonder if any of these thoughts coursed through her mind at a rate similar to her tears.
Once her tear ducts seemingly dried up, she asked how she could obtain a second opinion. The attending told her he recommended she go to the Cleveland Clinic if she desired. She gathered her things with one tissue in hand and bloodshot eyes. As she stood up, my attending, gave her a hug she most deserved. A hug I will never forget. Once we were alone, he asked me if I was ok? “Yes, I’m ok. Thank you for asking,” I promptly replied. I thanked him for allowing me to join him in clinic then quickly left.
I went to my car and I cried.
I had lied.
I was not ok.
- Zeller JL, Lynm C, Glass RM. Amyotrophic Lateral Sclerosis. JAMA. 2007;298(2):248. doi:10.1001/jama.298.2.248