Finding Gratitude in Patients’ Nightmares

Each paragraph of this narrative is inspired by a separate patient story from my last three months of neurosurgery rotations. Each paragraph ends with something I learned to be grateful for in that challenging situation. All identifiers have been removed or changed. Some of this material may be triggering regarding death and hardship.

Can you feel this? Move that foot. Move this arm. Pain is the only thing I feel. He feels nothing. The last bit of control he has is orbiting a bed as he is being fed half-warm hospital food. His anger and frustration are the only things he can feel. The pain is burning in his legs. My pain is tearing in my chest, and I told him that I have tasted his pain when I had surgery, but it was not this bad. I attempt to empathize with him, and I am thankful for my legs that keep me standing at his bedside while his legs disappear into nonfunctional spasms. I can walk out of his room, and he may never walk again.

Give me a thumbs up. Squeeze my hand. Pause. Jerry squeeze my hand. Jerry? Please. We chart for the thirtieth day straight that he remains on a ventilator, with his life slowly dwindling as the incapacitating brain bleed has left him with an opportunity for infection to overtake his still body. And there are others, many others. Half our patients do not even say good morning…not because they do not want to but because they cannot. It is a waiting game of healing or death; it is family discussion; it is a quiet suffering interrupted by the puffs of a ventilator. Now I am grateful to be able to say good morning to him and have the capacity to wonder what he is thinking, if he can at all, as he sits in a purgatory between life and death.

“Well, how long do I have?” “We can’t predict life but probably a year.” The couple sits there as if nothing is wrong, and the facade of hope shields inner brokenness. She now only has one more year to do everything she desires. Surgery will give her a few more months, but she will slowly drift into a state of unawareness, deficits, and a sea of unfair fate. All too many times this is routine – knowing this is the last time I will see this patient alive. Imagining the wake of misery as a tumor overtakes their brain. This instills as much fear as it does thankfulness for the life I live. I think of the life we voluntarily give up to be here with our patients as the patients involuntarily give up theirs. Suddenly, what seems like misery to me is pictured as a paradise for them because at least it involves the option of life. I am thankful for the ability to hold my loved ones without the fear of impending fate that slowly would peel them away from me into the black hole of disease.

“It was just a headache this morning – now it is a brain tumor?” The child meets eyes with me and naively plays with his toy cars and practices the multiplication tables he may never get to use. His big, bright toddler eyes that have not been tainted by the pain of the world. I know what is ahead, but he does not, at least for now, he is in painless bliss. The parents comfort the child but need comfort themselves as they sit there with crooked smiles and fear that springs from their falsely crinkled eyes. The parents cradle their child who just went limp on sedation as we drill a hole to drain the fluid spaces in his brain. The child screams, the mother cries, and I stand in the dark corner covering up my tears as I picture sisters without their brother and a father without a son. Now I cry, thankful I am not trapped in the hell of a child’s suffering and am walking out of the room only carrying a fraction of the grief on my shoulders.

Screaming when I walk into the hospital and screaming when I leave. Not just a scream but a shriek that sounds like it encompasses all pain that has ever been felt. Screams you hear from inside the walls of the unit, dampened by nothing: “Someone help me. Help me. Help me. I want to die.” The confusion from the brain tumor mixed with the withdrawal from alcohol looks like a suffering animal in a gut-turning state, and life paradoxically looks like a worse suffering than death. Nothing helps them. No one visits them. So, they scream. The uninhibited response to pain is what we all feel and want to say but is repressed into silent whimpers. And then I am grateful for my voice that does not have to scream but can speak words of comfort instead, and I am thankful for a support system in my days of terror.

It’s the middle of the night and there’s a gathering of family members, but not the happy kind. They cry and scream because a stroke has turned into a life-threatening bleed. She will not leave her mom’s side, and, because of COVID, it’s been a journey to get five seconds with her, since we cannot let visitors in. “My mother is dying, and I can’t even see her?” “No, I am sorry, it is policy.” The coldest seven words spoken to grief, but we had to say it. She flails and screams her love as we move emergently to the operating room. “I’m sorry – but we have to go.” To tear two loved ones apart after five seconds of union is a necessary crime. It would not be but twelve hours later and her middle-aged mother would die, even after all attempts to save her. Now, I revere the limitations of human intervention where the lines blur to be taken over by higher powers. I am grateful that in the end what will be will be and the unknown purpose of devastation is written out in the future plans to come.

As life dwindles, where is the joy, fulfillment, and gratefulness in this nightmare? Initially, we live in the patients’ worlds and fully embody being trapped in a cage barred with misery. Then I see that my perceived cage of negativity and challenges seems granular and insignificant in comparison. My fears are feigned, and their fears are tangible. My thankfulness stems from vicariously living their lives, and their thankfulness originates out of the necessity to grasp at a positive anchor point. The support system I have is flourishing compared to their deserts of dry love. The unknown is mundane for me and supernatural for them. The intensity of life is magnified when approaching the end, and I am constantly reminded of this. Honestly, it feels wrong to even complain of hunger or thirst, sleep deprivation, conversations with family members that were never had, or neglected lifestyle luxuries – at least I had the options. At least I escaped the hospital and in that escape was relatively unscathed. However, I know my goal is the opposite of escape; it is to be present in these disheartening stories that are the reality of many people’s lives. I stay so I can be the altering footnotes in the margins of the worst chapters in the patient’s book of life. I can add back the ripped-out pages that their stories are missing, and in this, I hope patients’ nightmares are engulfed in a highlight of positivity and paradoxical gratitude. Even in their nightmares, I hope to always find things we can be grateful for so I can make their terror less horrifying, the pain less prevalent, and the joy more tangible thereby bringing comfort consistently beneath us as we walk together into the frightening unknown.

About the Author:
Natalie Ivey is a fourth-year medical student at the UofSC School of Medicine Greenville.