She paced protectively beside the hospital bed and its current patient, her grown son, the mother lioness protecting her vulnerable cub. In her hand, she gripped a small notepad, a pen snugly tucked into the coiled-wire binding. Her worried eyes peered through her small rectangular frames, suspiciously watching my arrival. Without blinking, she tucked her short gray bob behind her ears, readying their acuity to my words.
She was the mother of a son infected with HIV.
I focused on the patient. He was my age, in his early forties, with mussed up reddish-blond hair. His face wore the fatigue and ravages of his illness. His temples were sunken-in, his bluish eyes dull, his teeth fragile. Although he gave an effort to smile, his sagging skin weighed down the corners of his mouth. His body was tucked and bundled to his chin with several hospital blankets. To say that he was tired-appearing would have been an understatement.
While introducing myself, I approached him with my outstretched hand. After we shook, I turned to his mother and repeated myself. She took my hand warmly. After introductions, she opened up her notepad and asked me to spell my name, writing it on a fresh clean sheet near the pad's end. I could see most of the previous pages, worn and tattered, were filled with her busywork.
"Well, John," I said, leaning back into the room's counter, "what brought you here today that I can help you with?"
Without hesitating, John's mother began to talk. "Mother," John interrupted her, "I can tell the doctor my problems on my own." I hoped that she wouldn't take his abruptness personally, instead recognizing his attempts to cling to his independence. She quickly silenced herself, slightly embarrassed, as John began to share his story with me.
In the mid-90s, John discovered he was infected with HIV. Through his diligent compliance of lifestyle and medication, he maintained an almost non-existent viral load. He worked-out, he ate well, he enjoyed life to the fullest. Unfortunately, in the past few years, his body and illness became resistant to his previous successful approach and, suddenly, he was dealing with the ravages of advancing HIV. Weight-loss, skin issues, opportunistic infections--each and every new problem was another lost battle in his war. After his most recent diagnosis of HIV-associated lymphoma, he moved back in with his mother and began chemotherapy. He was struggling immensely from both the effects of chemotherapy and his disease.
"Look, Doc," he said, unwrapping his blankets and lifting up his gown to reveal a swollen abdomen and legs, multiple tiny, kinked, bluish-veins spotting his transparent skin, "I have so much edema now that I rely on pain medication to help with the discomfort." His predicament looked painful. In fact, this uncontrolled and worsening swelling had been the purpose of his ER visit.
We talked a little longer about his life, his illness, and his recent setbacks. And through this conversation, I noticed John's mother slowly sadden and withdraw to the chair in the corner of the room. My heart went out to her--I couldn't imagine her pain, having to watch one of her children slowly dwindle from this sometimes devastating and unforgiving illness. Her anguished face, just moments before alert, now wore a look of tattered defeat.
"John," I assured him, "let me finish my physical exam and then I will order up some medications to make you comfortable." His mother wrote in her notebook as I talked.
I continued with my examination, after closely inspecting his protuding abdomen and edematous legs. His exam was difficult. He seemed to have significant findings with every system of his body, despite his vital signs begin stable.
Finally, I asked John to sit up so that I could auscultate his lungs from a posterior approach. "Can you help me, doc?" he asked, holding out his right arm to me. "Sure, John," I answered, grabbing his hand with my right hand and placing my left on his shoulder.
And that's when it hit me. Hard. Just how terrible John's predicament was. Don't get me wrong, I fully understood just how much suffering he had been dealing with recently as his body seemed to succumb to his setbacks, but touching his right shoulder had made me catch my breath.
Under the grip of my left hand, while coaxing John's worn body to sit up, the bareness and emaciation of his right shoulder astounded me. He had absolutely no bulk to it--no muscle, no fat, no cushiony subcutaneous tissue that one typically has to their shoulder contour. Nothing. All I could feel was bone. His clavicle, his humeral head, and his shoulder blade all right there. It was remarkably sad. I shifted my fingers in a futile attempt to palpate any "meat" on his bones. There was none.
After successfully sitting John up, with his mother's help on his other side, I shifted his gown off his shoulder while listening to his lungs. My eyes fixated on his shoulder's thin, transparent skin barely accomodating the stretching from his protruding bones. I simply couldn't quit looking at the fragile shoulder, a dichotomy to John's enlarged, padded ascitic legs and abdomen. What a damn, awful disease.
I left John's room and ordered his work-up and medications. Soon after, he was much more comfortable.
A few minutes later, the secretary called me. "Dr. Jim," she said, "the mother of Room 28 is waiting at the nurses' station to talk to you." I finished with a chart and walked the hallway, finding the mother leaning into the station counter, flipping through her notepad. "Hello, maam," I said, approaching her, "I understand you wanted to talk to me?"
She looked up from her notepad, closing it, while her eyes settled on mine. "Yes, doctor, I do." She paused before continuing. "I just want to thank you for your kindness to John. I know you are just doing your job, per se, but there was something more from you, something I can't put a finger on, that made us both feel very good." She choked up as she spoke.
I grabbed her hands, one of which still held her precious notepad, and thanked her for her kind words. "My heart goes out to both of you," I continued, watching her tears progress to sobs, "what an awful disease for anybody to endure." She took her eyes from mine and looked at her feet. I thought of what to say next, the words coming quite easy. "John is so lucky and blessed to have a mother like you. You opened your home, you take notes, you accompany him to all of his appointments. We should all be so lucky." I paused before finishing. "And loved."
She looked at me again, her act of the protective mother lioness long-abandoned. "Thank you," she repeated before turning and walking back towards John's room.
We admitted John for further care.
Although I pride myself on my composure through all of the emergency department's chaos, I am only human and sometimes cannot shake a patient's affect on me. John was one such patient. It must have visibly shown, too, since several of my coworkers asked me if I was okay. "No," I answered honestly, "but I will be."
At the end of the day, we are all human. We are all in this world together. We are all united by the common threads of emotions. We are all prone to the extremes of happiness and sadness and everything between. We are all in need of compassion and kindness and love.
Especially, though, those who are suffering. And John was suffering. My greatest hope for John is that he may find much love, compassion, and kindness on his continued life journey.
There is no human being who deserves anything less.
As always, big thanks for reading.
Thursday, October 14, 2010
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22 comments:
Sniff. Blink. Sniff. Repeat.
Thanks for the post.
You know, as I get older, the things that matter to me most are what I've read here on your blog. Compassion, kindness, listening (really listening, not just hearing)are important, especially in your job. I am sure you made a difference for John and his mother, a difference that will matter to her in the days to come.
Seeing the heart, seeing the love she has for her son and seeing John as a PERSON first.....those things matter.
Thank you for your blog. I'm not sure how I stumbled upon it, but I find it so heartening. I often get wrapped up in my own woes and worries, but your blog reminds me that it is important to see the humanity and frailty in us all. That many in different circumstances feel similar pain and that we should not feel alone in our suffering.
It is one of life's greatest honors to walk in someone's pain with them. You do it well.
Nice to see you back. What sad story, beautifully written, tugged my heart. I can see how it affected you too.
In this field sometimes we get jaded in a sense. It is what must happen to do what we do daily and not be a quivering mass of uselessness for half our shift. Every so often though, one pt breaks through the shell. Just to remind us that we are human and to test our compassion. You handled this day well and that mother will always remember you for that. Even without her notebook.
Good job Doc. Well done.
You win a prize: Blogger most likely to leave me speechless.
Well done.
<>< Katie
Damn it. You made me cry.
Stop that.
M
wow what a horrible thing for them. you know my son't lifestyle (drug addiction and who knows what else?) scared me so bad with what is out there, some of that scared me more than the drugs. it's hard to be a mother sometimes, and i'm sure it is as a father too.
my son, chuck, now has over a year and a half clean and sober and seems to be on the right path. finally. for today anyway.
i wish the best for your patient and his mom.
smiles, bee
xoxoxoxooxxo
Beautiful.
This is the kind of story I was talking about. The combination of feelings for the son and feelings for the mother is hard to find outside of medicine. It brings back so many of my own memories. Glad you're still feeling. Thanks for sharing.
I have a cousin who has been HIV+ for the last 15 years or so. His health is remarkably good, but he has seen many, many friends, and his partner, die of AIDS over the years. It's a terrible disease.
How lucky John was to have you as his doctor.
Yet again I'm left speechless but this time I have tears running down my face.
I can't help but imagine myself in 10 years or more, having finished school/residency and gotten a few years experience under my coat. When presented with such a patient who is so fragile and in such need of just the right words and a special touch, I pray I have the grace and compassion you seem to have ingrained in you to know what to say to patients and family alike.
Well done.
I'm sitting here with that prickly nose/welling up eyes feeling. Isn't it amazing that, if we ALLOW ourselves to feel, how much can be gleaned from one patient/person? John has an amazing Momma, and was very lucky to be touched by an amazing doctor such as yourself. May we all show such compassion.
~Julie
As a mother of a young adult son with uncontrolled schizophrenia, I can relate in a small way to the mother in your story. There are many of us out here battling to save our children while we battle life's other traumas (e.g. fighting to save our homes from foreclosure) and it feels like a sinking ship sometimes. I can't express enough gratitude for those moments when someone extends a hand of comfort or kindness. Thank you doctor - for being one of those people.
Barbara
I AM...
With tears in my eyes I think of all the co-workers I have lost to this horrible disease over the years. There were too many funerals in the late 80's and I would have hoped by now that a cure would have been found. Makes my teeny weeny health issues trivial by comparison. You are the most compassionate of men and the mom will always remember you no matter what the outcome...ciao
Wow. It is a gift to see our patients and their families as people, not a condition. Good work.
Beautifully written. You take all of us their with you.
The quality of you that is most remarkable, the quality that they saw in you, is what what make all of us who know you personally so drawn to you. You are a remarkable person and i am honored to know you.
Absolutely beautiful post...I completely agree.
We who are experienced health care providers can always appear to maintain interest during our exams and histories, no matter how convoluted or silly or boring.
What can't be "faked" is the compassion that comes from one human soul encountering another. In my heart, this is when the Christ is us recognizes the Christ in another one of our brothers or sisters.
Many here are too young to remember when people who were + couldn't get a handshake, let alone a hug of concern. Most places in North America it is so much better than 25 years ago, but let's not forget the pain and stigma this disease brings in so many other countries and cultures.
And I TOTALLY agree ~ John was lucky to have you as a doctor, even though we can ALL see you didn't write this to highlight your own loving actions. Thanks anyway for being able to laugh at the malingerers and still respond to those truely in need of care!
Pattie, RN
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