Today, I talked at length with that lady whose husband has Creutzfeldt–Jakob disease (CJD). That patient — the one with arbitrary myoclonic jerks, always naked and uncovered by blankets due to uncontrolled flailing, his penis and Foley catheter exposed. That one with overgrown mycotic toenails and eyes that are always only half-open, his gaze drifting everywhere. He was until now just a patient for me — the CJD patient.
Yet today I met Richard (name changed to protect patient privacy) all over again through the lens of his wife. Before, I had felt slightly repelled to touch him, knowing his last good shower was weeks ago. Now, seeing his wife kiss him on the lips over and over again, with tears coursing down her cheeks, I no longer felt reluctant to do so. While she held his head close to hers, I took his hand. To us in the medical team, his jerks were called startle myoclonus, a prototypical symptom of his disease, and a sign that his condition was fast deteriorating. But to his wife, they reflected his lingering vitality. “Oh!” she would exclaim, “He’s waking up!” While his agitation made us white coats step back, they made her feel like he was still there.
When I first walked into his room in the palliative care floor, Frank Sinatra’s “New York, New York” was playing. She was singing it to him, whispering almost. They were close up to each other, eye to eye, nose to nose, breathing into each other’s mouths. Witnessing that scene brought tears to my eyes. It did so partly because it reminded me he was someone’s husband before becoming a sedated patient lying on a hospital bed. A man with tastes and opinions. “This song played at our wedding,” she told me right away. But most of all it touched me because it was such a strong demonstration of love. She didn’t care that his breath smelled or that he was only partly there, soon to pass away. She didn’t care about anything, other than caring for him.
Throughout my time in that room, she mentioned several things about him: “You know, there is no greater lawyer than him. How could we possibly find someone to defend him as competently as he did others?” And: “He played piano like no one else did. Self-taught too.” And still: “It’s because of him that [this or that] law is no longer in place.” For a moment, I felt defensive of her desire to impress me; I had already heard he was a highly distinguished lawyer. Then I realized she probably just wanted me to understand who her husband was to her—someone far from who I was meeting.
Regardless of her intentions, what I took away was simple: What a beautiful love story they shared, how much admiration she feels for this man, and how much life they have lived together. What an unconditional love. As I rubbed away my tears, I kept thinking I want to grow old with you, with the certainty I’d care for you any day like that lady cared for her husband, Richard. The CJD patient.
Helena Frischtak is a medical student.
